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Elsaeed TM, Elnaggar RK, Elbanna MF, Alghadier M, Kamel AM, Aboeleneen AM, Qissi FA, Ismaeel MM. Movement-Based Priming: A Clinical Trial on the Effect of Cross-Training on Locomotor Abilities of Children with Unilateral Cerebral Palsy. CHILDREN (BASEL, SWITZERLAND) 2025; 12:508. [PMID: 40310138 PMCID: PMC12025556 DOI: 10.3390/children12040508] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 03/18/2025] [Revised: 04/11/2025] [Accepted: 04/14/2025] [Indexed: 05/02/2025]
Abstract
Background: Children with unilateral cerebral palsy (UCP) frequently experience limitations in locomotor abilities, attributable to a complex interplay of factors including muscle weakness and reduced joint mobility. Movement-based priming, such as cross-training (CT), has emerged as a potential intervention to enhance motor function in children with UCP. However, evidence of its efficacy remains limited. Objective: This study aimed to investigate the effect of CT-specifically, a strengthening-based unilateral priming protocol-on muscle strength, joint mobility, and locomotor abilities in children with UCP. Methods: Thirty-six children with UCP were enrolled in a randomized controlled trial. Participants were randomized into two groups: the control group (n = 18; underwent a tailored physical rehabilitation program) and the CT group (n = 18; participated in a CT program incorporating unilateral priming exercises targeting the less-affected lower followed by the same rehabilitation program administered to the control group). Dorsiflexor strength, ankle joint mobility, and locomotor ability assessed via the 10 m walk test (10 mWT), 6 min walk test (6 MWT), and timed up-and-go test (TUG) were evaluated pre- and post-intervention. Results: Significant moderate-to-large between-group differences were observed in dorsiflexor strength (p = 0.032, partial η2 = 0.128), ankle mobility (p = 0.016, partial η2 = 0.159), and locomotor ability (10 mWT [p = 0.017, partial η2 = 0.157]; 6 MWT [p = 0.004, partial η2 = 0.222]; TUG [p = 0.047, partial η2 = 0.111]). The CT group demonstrated superior improvements concerning all outcomes. Conclusions: Unilateral priming through strengthening-based CT is a viable intervention for enhancing motor function in children with UCP, providing a promising complement to the current rehabilitation protocols.
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Affiliation(s)
- Tamer M. Elsaeed
- Department of Physical Therapy for Pediatrics, Faculty of Physical Therapy, Cairo University, Giza 12611, Egypt
- Department of Physical Therapy, Faculty of Medical Rehabilitation Sciences, King Abdulaziz University, Jeddah 22252, Saudi Arabia
| | - Ragab K. Elnaggar
- Department of Health and Rehabilitation Sciences, College of Applied Medical Sciences, Prince Sattam Bin Abdulaziz University, Abdullah Ibn Amer St., Al-Kharj 11942, Saudi Arabia
- Faculty of Physical Therapy, Cairo University, Giza 12611, Egypt
| | - Mohammed F. Elbanna
- Department of Physical Therapy, Faculty of Medical Rehabilitation Sciences, King Abdulaziz University, Jeddah 22252, Saudi Arabia
- Faculty of Physical Therapy, Cairo University, Giza 12611, Egypt
| | - Mshari Alghadier
- Department of Health and Rehabilitation Sciences, College of Applied Medical Sciences, Prince Sattam Bin Abdulaziz University, Abdullah Ibn Amer St., Al-Kharj 11942, Saudi Arabia
| | - Aziza M. Kamel
- Medical Surgical Nursing, College of Nursing Sciences, Prince Sattam Bin Abdulaziz University, Al-Kharj 11942, Saudi Arabia
| | - Ahmed M. Aboeleneen
- Department of Physical Therapy, Faculty of Medical Rehabilitation Sciences, King Abdulaziz University, Jeddah 22252, Saudi Arabia
- Faculty of Physical Therapy, Cairo University, Giza 12611, Egypt
| | - Fahad A. Qissi
- Department of Health and Rehabilitation Sciences, College of Applied Medical Sciences, Prince Sattam Bin Abdulaziz University, Abdullah Ibn Amer St., Al-Kharj 11942, Saudi Arabia
- Physical Therapy and Health Rehabilitation, Comprehensive Rehabilitation Center, Al-Kharj 16432, Saudi Arabia
| | - Marwa M. Ismaeel
- Department of Physical Therapy for Pediatrics, Faculty of Physical Therapy, Cairo University, Giza 12611, Egypt
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Ortega-Cruz A, Sánchez-Silverio V, Riquelme-Aguado V, Alonso-Perez JL, Abuín-Porras V, Villafañe JH. Effects of Hippotherapy and Horse-Riding Simulators on Gross Motor Function in Children with Cerebral Palsy: A Systematic Review. J Clin Med 2025; 14:283. [PMID: 39797365 PMCID: PMC11720817 DOI: 10.3390/jcm14010283] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/18/2024] [Revised: 12/30/2024] [Accepted: 01/02/2025] [Indexed: 01/13/2025] Open
Abstract
Background/Objectives: Cerebral palsy (CP) can have a negative impact on gross motor function. Conventional hippotherapy and horse-riding simulators (HRS) have shown promising results on gross motor function in populations with neurological disorders. This review aims to update the knowledge on the effectiveness of hippotherapy on gross motor function in children with CP. Methods: A search was conducted in Academic Search Ultimate, CINAHL, Medline complete, and PEDro covering publications between 2012 and 2022. Two authors identified studies that met the inclusion criteria; a third author resolved discrepancies. Studies were included if they analyzed the effects of hippotherapy on the gross motor function of children with CP. The quality of the methodology was assessed according to the PEDro scale. Results: Of the 150 studies initially identified, 9 were included in this review. The studies showed fair (N = 3) and good (N = 6) methodological quality on the PEDro scale. The majority used conventional hippotherapy (N = 7), while a minority used HRS (N = 2). The most commonly used protocol for conventional hippotherapy was 1-2 sessions of 30-45 min per week for 8 weeks (N = 4), whereas for HRS, these protocols were varied. Seven studies on conventional hippotherapy and one study on HRS showed improvements in gross motor function. However, the hippotherapy protocols were not very standardized and the samples were neither homogeneous nor representative. Conclusions: Conventional hippotherapy and HRS appear to have evidence to support their benefits on gross motor function in children with CP. However, more clinical trials with standardized protocols and more representative samples are needed to confirm these effects.
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Affiliation(s)
- Antonio Ortega-Cruz
- Department of Physiotherapy, Faculty of Medicine, Health and Sports, Universidad Europea de Madrid, 28670 Villaviciosa de Odón, Spain; (A.O.-C.); (J.L.A.-P.); (V.A.-P.); (J.H.V.)
| | - Víctor Sánchez-Silverio
- School of Applied Health Sciences, Pontificia Universidad Católica Madre y Maestra, Autopista Duarte Km 1 1/2, Santiago De Los Caballeros 51000, Dominican Republic;
| | - Víctor Riquelme-Aguado
- Department of Basic Health Sciences, Rey Juan Carlos University, 28933 Madrid, Spain
- Grupo de Investigación Consolidado de Bases Anatómicas, Moleculares y del Desarrollo Humano de la Universidad Rey Juan Carlos (GAMDES), 28922 Alcorcón, Spain
| | - Jose Luis Alonso-Perez
- Department of Physiotherapy, Faculty of Medicine, Health and Sports, Universidad Europea de Madrid, 28670 Villaviciosa de Odón, Spain; (A.O.-C.); (J.L.A.-P.); (V.A.-P.); (J.H.V.)
- Musculoskeletal Pain and Motor Control Research Group, Faculty of Sport Sciences, Universidad Europea de Madrid, 28670 Villaviciosa de Odón, Spain
| | - Vanesa Abuín-Porras
- Department of Physiotherapy, Faculty of Medicine, Health and Sports, Universidad Europea de Madrid, 28670 Villaviciosa de Odón, Spain; (A.O.-C.); (J.L.A.-P.); (V.A.-P.); (J.H.V.)
| | - Jorge Hugo Villafañe
- Department of Physiotherapy, Faculty of Medicine, Health and Sports, Universidad Europea de Madrid, 28670 Villaviciosa de Odón, Spain; (A.O.-C.); (J.L.A.-P.); (V.A.-P.); (J.H.V.)
- Musculoskeletal Pain and Motor Control Research Group, Faculty of Sport Sciences, Universidad Europea de Madrid, 28670 Villaviciosa de Odón, Spain
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Alghadier M, Almasoud N, Alharthi D, Alrashdi O, Albesher R. Association between hand grip strength and quality of life in children with cerebral palsy: a cross-sectional study. PeerJ 2024; 12:e18679. [PMID: 39703915 PMCID: PMC11657191 DOI: 10.7717/peerj.18679] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/15/2024] [Accepted: 11/19/2024] [Indexed: 12/21/2024] Open
Abstract
Background Cerebral palsy (CP) covers a wide range of causes and symptoms. It is characterized by persistent motor and postural dysfunction caused by a non-progressing pathological lesion of the immature brain. Development of fine motor skills, such as the ability to manipulate objects with smaller muscles, is crucial for a child's development. It is evident that there is a lack of hand grip strength (HGS) and quality of life (QoL) data in children with CP compared to typically developed (TD) children. Understanding the relationship between these factors might help facilitate healthcare provision and provide insight into rehabilitation programs. The aim of this study is to investigate the relationship between HGS and health-related quality of life (HRQoL) in children with CP compared to TD children. Methods An experimental cross-sectional study was conducted and 60 children (30 CP and 30 TD) were chosen; age, gender, height, weight, body mass index, preferred hand, number of siblings, school attendance, and housing type data were collected. HGS was measured using a standard hand dynamometer, and HRQoL was measured using the KIDSCREEN-10 item questionnaire. Results There was a statistically significant main effect of gender on the average HGS, F (1, 56) = 24.09, p < 0.001, and the KIDSCREEN-10 sum score, F (1, 56) = 8.66, p < 0.001, and the main effect of group on the KIDSCREEN-10 sum score, F (1, 56) = 17.64, p < 0.001. A significant correlation between HGS and the KIDSCREEN-10 sum score in the CP group (r = 0.35, p = 0.03), and the TD group (r = 0.56, p = 0.001). Conclusion HGS was lower in children with CP, and girls had significantly lower HGS compared to boys in both groups, CP and TD children. HRQoL was significantly lower in children with CP, with boys reporting higher HRQoL on the KIDSCREEN-10 questionnaire compared to girls. Our data showed that the higher the KIDSCREEN-10 sum score is, the stronger the HGS of children in both groups. The results of this study indicate that hand grip strength may significantly impact the QoL of children with CP. A correlation between HGS and HRQoL points to the importance of improving strength in children with CP through interventions and directed rehabilitation programs.
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Affiliation(s)
- Mshari Alghadier
- Department of Health and Rehabilitation Sciences, Prince Sattam bin Abdulaziz University, Kharj, Saudi Arabia
| | - Nada Almasoud
- Department of Physical Therapy, Maternity and Children’s Hospital in Alkharj, Kharj, Saudi Arabia
| | - Dalia Alharthi
- Department of Physical Therapy, Alhada Armed Forces Hospital, Taif, Saudi Arabia
| | - Omar Alrashdi
- Department of Physical Therapy, King Khalid Hospital, Hail, Saudi Arabia
| | - Reem Albesher
- Department of Rehabilitation Sciences, Princess Nourah bint Abdulrahman University, Riyadh, Saudi Arabia
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Murugasen S, Springer P, Olusanya BO, Gladstone M, Newton C, Kakooza-Mwesige A, Donald KA. Cerebral palsy in African paediatric populations: A scoping review. Dev Med Child Neurol 2024; 66:990-1012. [PMID: 38351549 DOI: 10.1111/dmcn.15878] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/26/2023] [Revised: 01/11/2024] [Accepted: 01/15/2024] [Indexed: 07/05/2024]
Abstract
AIM To review the epidemiology and outcomes of African children with cerebral palsy (CP) over a 21-year period. METHOD The PubMed, Scopus, and Web of Science online databases were searched for original research on African children with CP aged 18 years and younger published from 2000 to 2021. RESULTS A total of 1811 articles underwent review against explicit criteria; 93 articles were selected for inclusion in the scoping review. The reported prevalence of CP ranged from 0.8 to 10 per 1000 children. Almost half had perinatal risk factors, but up to 26% had no identifiable risk factor. At least one-third of children with CP had one or more comorbidities, most commonly epilepsy, intellectual disability, and malnutrition. African children with CP demonstrated excess premature mortality approximately 25 times that of the general population, predominantly from infections. Hospital-based and younger populations had larger proportions of children with severe impairments. African children with CP had inadequate access to care and education, yet showed functional improvements compared to controls for all evaluated interventions. INTERPRETATION The prevalence of CP in Africa remains uncertain. African children with CP have different risk profiles, greater premature mortality, and more severe functional impairments and comorbidities compared to the Global North. Several barriers prevent access to optimal care. Larger African studies on validated and effective interventions are needed.
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Affiliation(s)
- Serini Murugasen
- Department of Paediatrics and Child Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Stellenbosch, South Africa
- Division of Developmental Paediatrics, Department of Paediatrics and Child Health, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa
| | - Priscilla Springer
- Department of Paediatrics and Child Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Stellenbosch, South Africa
| | | | - Melissa Gladstone
- Department of Women's and Children's Health, University of Liverpool, Liverpool, UK
- Department of Paediatrics, Kamuzu University of Health Sciences, Blantyre, Malawi
| | - Charles Newton
- Department of Psychiatry, University of Oxford, Oxford, UK
- Kenya Medical Research Institute-Wellcome Trust Collaborative Programme, Kilifi, Kenya
| | - Angelina Kakooza-Mwesige
- Department of Paediatrics and Child Health, Makerere University College of Health Sciences, Kampala, Uganda
| | - Kirsten A Donald
- Division of Developmental Paediatrics, Department of Paediatrics and Child Health, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa
- Neuroscience Institute, University of Cape Town, Cape Town, South Africa
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Clark J, Sarmiento C, Sanders J, Wang L, Fetsko L, Akamagwuna U. Navigating the complex care landscape: Addressing challenges and advancing adult care frameworks for individuals with cerebral palsy. HEALTH CARE TRANSITIONS 2024; 2:100051. [PMID: 39712610 PMCID: PMC11658267 DOI: 10.1016/j.hctj.2024.100051] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 10/01/2023] [Revised: 02/08/2024] [Accepted: 02/15/2024] [Indexed: 12/24/2024]
Abstract
Despite cerebral palsy (CP) being the most common motor disability in childhood, there are more adults living with CP than children. The necessitates a systematic approach to the care of adults with CP. This perspective piece presents the complex nature of a lifespan approach to the care of a childhood-onset disability. We share the multidisciplinary considerations from a primary care model to address chronic health conditions and preventive care. We also present a care model with an emphasis on Neurology and Neurodevelopmental Disability with its implications for adults with CP. Finally, we advocate for a care model that encompasses a biopsychosocial approach to treatments and interventions with essential elements that include the adult perspective.
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Affiliation(s)
- Jensine’ Clark
- University of Cincinnati, College of Medicine, Department of Neurology and Rehabilitation Medicine, 260 Stetson St Suite 5200, Cincinnati, OH 45214, USA
| | - Cristina Sarmiento
- University of Colorado Anschutz Medical Campus, Department of Pediatric Rehabilitation Medicine, Children's Hospital Colorado, 13123 East 16th Ave, Box 285, Aurora, CO 80045, USA
| | - Jessica Sanders
- University of Colorado Anschutz Medical Campus, Department of Pediatric Rehabilitation Medicine, Children's Hospital Colorado, 13123 East 16th Ave, Box 285, Aurora, CO 80045, USA
| | - Lauren Wang
- University of Cincinnati, College of Medicine, Department of Family and Community Medicine, 231 Albert Sabin Way, Medical Sciences Building, Suite 4012, Cincinnati, OH 45267-0582, USA
| | - Lauren Fetsko
- University of Wisconsin School of Medicine and Public Health, Department of Pediatrics, 600 HIghland Ave, H6/568 CSC, Madison, WI 53792, USA
| | - Unoma Akamagwuna
- Baylor College of Medicine, Texas Childrens Hospital, H. Ben Taub Department of Pediatric Rehabilitation, 7200 Cambridge St, Houston, TX 77030, USA
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Sabater-Gárriz Á, Gaya-Morey FX, Buades-Rubio JM, Manresa-Yee C, Montoya P, Riquelme I. Automated facial recognition system using deep learning for pain assessment in adults with cerebral palsy. Digit Health 2024; 10:20552076241259664. [PMID: 38846372 PMCID: PMC11155325 DOI: 10.1177/20552076241259664] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/09/2024] [Accepted: 05/07/2024] [Indexed: 06/09/2024] Open
Abstract
Objective Assessing pain in individuals with neurological conditions like cerebral palsy is challenging due to limited self-reporting and expression abilities. Current methods lack sensitivity and specificity, underlining the need for a reliable evaluation protocol. An automated facial recognition system could revolutionize pain assessment for such patients.The research focuses on two primary goals: developing a dataset of facial pain expressions for individuals with cerebral palsy and creating a deep learning-based automated system for pain assessment tailored to this group. Methods The study trained ten neural networks using three pain image databases and a newly curated CP-PAIN Dataset of 109 images from cerebral palsy patients, classified by experts using the Facial Action Coding System. Results The InceptionV3 model demonstrated promising results, achieving 62.67% accuracy and a 61.12% F1 score on the CP-PAIN dataset. Explainable AI techniques confirmed the consistency of crucial features for pain identification across models. Conclusion The study underscores the potential of deep learning in developing reliable pain detection systems using facial recognition for individuals with communication impairments due to neurological conditions. A more extensive and diverse dataset could further enhance the models' sensitivity to subtle pain expressions in cerebral palsy patients and possibly extend to other complex neurological disorders. This research marks a significant step toward more empathetic and accurate pain management for vulnerable populations.
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Affiliation(s)
- Álvaro Sabater-Gárriz
- Department of Research and Training, Balearic ASPACE Foundation, Marratxí, Spain
- Department of Nursing and Physiotherapy, University of the Balearic Islands, Palma de Mallorca, Spain
- Research Institute on Health Sciences (IUNICS), University of the Balearic Islands, Palma de Mallorca, Spain
- Health Research Institute of the Balearic Islands (IdISBa), Palma de Mallorca, Spain
| | - F Xavier Gaya-Morey
- Department of Mathematics and Computer Science, University of the Balearic Islands, Palma de Mallorca, Spain
| | - José María Buades-Rubio
- Research Institute on Health Sciences (IUNICS), University of the Balearic Islands, Palma de Mallorca, Spain
- Department of Mathematics and Computer Science, University of the Balearic Islands, Palma de Mallorca, Spain
| | - Cristina Manresa-Yee
- Research Institute on Health Sciences (IUNICS), University of the Balearic Islands, Palma de Mallorca, Spain
- Department of Mathematics and Computer Science, University of the Balearic Islands, Palma de Mallorca, Spain
| | - Pedro Montoya
- Research Institute on Health Sciences (IUNICS), University of the Balearic Islands, Palma de Mallorca, Spain
- Health Research Institute of the Balearic Islands (IdISBa), Palma de Mallorca, Spain
- Center for Mathematics, Computation and Cognition, Federal University of ABC, São Bernardo do Campo, Brazil
| | - Inmaculada Riquelme
- Department of Nursing and Physiotherapy, University of the Balearic Islands, Palma de Mallorca, Spain
- Research Institute on Health Sciences (IUNICS), University of the Balearic Islands, Palma de Mallorca, Spain
- Health Research Institute of the Balearic Islands (IdISBa), Palma de Mallorca, Spain
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Hajiyeva IE. [Morbidity rate of children's cerebral palsy in Baku city]. Zh Nevrol Psikhiatr Im S S Korsakova 2024; 124:143-146. [PMID: 38261297 DOI: 10.17116/jnevro2024124011143] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/24/2024]
Abstract
OBJECTIVE To study the morbidity rate of children's cerebral palsy (CP) in Baku in children born in 2006-2016. MATERIAL AND METHODS During 2006-2016, 35 891, 37 130, 37 459, 40 050, 34 726, 34 192, 33 258, 30 373, 29 722, 29 654 and 29 564 children were born in Baku. CP was diagnosed in 1162 of these children. Newborns and children with CP were divided into 3 groups by body mass (<1500; 1500- 2500; 2500 and more) and into 4 groups by the gestational age (<28, 28-32; 32-36, 36 and more weeks). The morbidity rates were detected in these groups. The statistical significance of morbidity rates was assessed by χ2 criteria. RESULTS The morbidity rate of CP changed within the interval 0.27% (95% CI 0.22-0.33%) in 2006 to 0.37% (95% CI 0.30-0.44%) in 2016. The difference between the minimum and maximum morbidity rates was not statistically significant (p>0.05). The morbidity rate of CP in newborns with body mass <1500 grams was 10.35% (95% CI 0-21.65%) and was 6.1 times higher than in the group of newborns weighing 1500-2500 grams at birth (1.72%; 95% CI 0.20-3.25%) and 30.4 times higher than in the group of newborns with body mass ≥2500 grams (0.34%; 95% CI 0.27-0.41%). The difference between morbidity rates of CP in groups depending on birth body mass was significant (p<0.0001). CONCLUSION The incidence rate of CP in a cohort of newborns during the first 60 months after birth in 2006-2016 fluctuated in the range of 0.27-0.37% and had a weak growth trend. The morbidity rate of children's CP is significantly higher in children with body mass at birth <1500 (10.34%) and 1500-2500 grams (1.72%) than in children with body mass at birth 2500 and more grams (0.34%). The gestational age of newborns affects the morbidity rate of CP, which is 5.48; 1.78 and 0.34% at gestational age <32, 32-36 and ≥36 weeks. The structure of subtypes of this pathology is close to that in other populations against the background of the comparative morbidity rate of CP in Baku, the proportion of spastic unilateral, spastic bilateral, dyskinetic and atonic CP is 35.2; 58.0; 3.9 and 1.4%, respectively.
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Hellström S, Jonsdotter A, Jonsson M, Pettersson K, Saltvedt S, Herbst A, Ågren J, Ådén U, Domellöf M, Hagberg H, Carlsson Y. A follow up on the feasibility after national implementation of magnesium sulfate for neuroprotection prior to preterm birth. Acta Obstet Gynecol Scand 2023; 102:1741-1748. [PMID: 37680134 PMCID: PMC10619608 DOI: 10.1111/aogs.14673] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/06/2023] [Revised: 08/16/2023] [Accepted: 08/18/2023] [Indexed: 09/09/2023]
Abstract
INTRODUCTION The risk for brain injury manifested as cerebral palsy is higher in very preterm born children than in term. Prenatal administration of magnesium sulfate (MgSO4 ) has been shown to be neuroprotective and reduces the proportion of very preterm born children later diagnosed with cerebral palsy. A Swedish national clinical practice guideline was implemented in March 2020, stipulating the administration of a single intravenous dose of 6 g MgSO4 1-24 h prior to delivery before gestational age 32+0, aiming for 90% treatment coverage. The aim of this study was to evaluate the feasibility of this new clinical practice guideline in the first year of its implementation. MATERIAL AND METHODS Data on MgSO4 treatment were collected by reviewing the medical charts of women who gave birth to live born children in gestational age 22+0-31+6 during the period of March 1, 2020 to February 28, 2021, at five Swedish university hospitals. Women with pre-eclampsia, eclampsia, or high elevated liver enzymes low platelets (HELLP) were excluded. RESULTS A total of 388 women were eligible and 79% received treatment with MgSO4 . Of the 21% not receiving treatment, 9% did not receive treatment due to lack of knowledge about the clinical practice guideline, 9% were not possible to treat and 3% had missing data. The proportion treated increased from 72% to 87% from the first to the last 3 months. Of those treated, 81% received the drug within the stipulated timeframe (mean 8.7 h, median 3.4 h). CONCLUSIONS There was a positive trend over time in the proportion of women receiving MgSO4 treatment, but the a priori target of 90% was not reached during the first year of implementation. Our findings indicate that this target could be reached with additional information to clinicians.
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Affiliation(s)
- Sara Hellström
- Department of Obstetrics and Gynecology, Region Västra GötalandSahlgrenska University HospitalGothenburgSweden
- Division of Neonatology, Department of Pediatrics, The Queen Silvia Children's HospitalSahlgrenska University HospitalGothenburgSweden
| | - Andrea Jonsdotter
- Department of Obstetrics and Gynecology, Region Västra GötalandSahlgrenska University HospitalGothenburgSweden
- Center of Perinatal Medicine and HealthInstitute of Clinical Sciences, Sahlgrenska Academy, University of GothenburgGothenburgSweden
| | - Maria Jonsson
- Department of Women's and Children's HealthUppsala UniversityUppsalaSweden
| | - Karin Pettersson
- Clinical Intervention Science and Technology, CLINTECKarolinska InstituteStockholmSweden
| | - Sissel Saltvedt
- Department of Women's and Children's HealthKarolinska Institutet, Karolinska University HospitalStockholmSweden
| | - Andreas Herbst
- Department of Obstetrics and Gynecology, Skåne University HospitalInstitution for Clinical Sciences Lund, Lund UniversityLundSweden
| | - Johan Ågren
- Department of Women's and Children's HealthUppsala UniversityUppsalaSweden
| | - Ulrika Ådén
- Department of Women's and Children's HealthKarolinska Institutet, Karolinska University HospitalStockholmSweden
- Department of Biomedical and Clinical SCIENCESLinköping UniversityLinköpingSweden
| | - Magnus Domellöf
- Department of Clinical Sciences, PediatricsUmeå UniversityUmeåSweden
| | - Henrik Hagberg
- Department of Obstetrics and Gynecology, Region Västra GötalandSahlgrenska University HospitalGothenburgSweden
- Center of Perinatal Medicine and HealthInstitute of Clinical Sciences, Sahlgrenska Academy, University of GothenburgGothenburgSweden
| | - Ylva Carlsson
- Department of Obstetrics and Gynecology, Region Västra GötalandSahlgrenska University HospitalGothenburgSweden
- Center of Perinatal Medicine and HealthInstitute of Clinical Sciences, Sahlgrenska Academy, University of GothenburgGothenburgSweden
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Wibeck AL, Himmelmann K, Jonsson U, Eek MN. Range of Motion Limitations in Middle-aged Adults With Cerebral Palsy. Arch Rehabil Res Clin Transl 2023; 5:100303. [PMID: 38163028 PMCID: PMC10757187 DOI: 10.1016/j.arrct.2023.100303] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/03/2024] Open
Abstract
Objective To describe limitations in range of motion (ROM) in middle-aged adults with cerebral palsy (CP), and identify associations with CP subtype, gross motor function, sex and age. Design Population-based cohort study. Setting Local and regional referral centers. Participants Inclusion criteria: diagnosis of CP, born 1959 to 1978 and living in the county of Västra Götaland, Sweden. In the population-based register of CP in Western Sweden, 417 subjects were identified and 139 volunteered to participate. Adults with CP, born elsewhere, who had moved into the area were invited through patient organizations and habilitation units, and eleven chose to participate. In total 150 participants, age 37-58 years (mean 48) 65 women (43%) (N=150). All CP subtypes and Gross Motor Function Classification (GMFCS) levels were represented. Interventions Not applicable. Main Outcome Measures Passive ROM was measured in the upper and lower extremity and was classified into 4 levels (inspired by The Spinal Alignment and Range of Motion Measure and adapted from the values of the American Academy of Orthopedic Surgeons); good=1, vs mild=2, moderate=3 or severe=4 limitation. The results were summarized to obtain a total score of the participants' ROM limitations. Results Moderate to severe limitations were present in 98 % of the participants. There was a correlation to GMFCS level in both the upper and lower extremity (P<.001), but no correlation with age. Upper extremity limitations were most common in dyskinetic CP, lower extremity limitations were most common in dyskinetic CP and bilateral spastic CP. Men had more limitations in the lower extremity (P=.001). The most common limitation in the lower extremity was hamstrings tightness (82%) and hip abduction (80%), and in the upper extremity, limited shoulder abduction (57%). Conclusions Limited ROM is common in adults with CP, most pronounced in shoulders, hip joints and hamstrings muscles, with no differences related to age in this age-span.
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Affiliation(s)
- Ann-Louise Wibeck
- Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Sweden
- Region Västra Götaland, Habilitation & Health, Adult Habilitation, Gothenburg, Sweden
| | - Kate Himmelmann
- Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Sweden
| | - Ulrica Jonsson
- Region Västra Götaland, Habilitation & Health, Adult Habilitation, Gothenburg, Sweden
- Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Sweden
| | - Meta Nyström Eek
- Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Sweden
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Alex A, Lindh MG, Palmcrantz S. Assessing eating and swallowing in adults born with intellectual and motor disabilities: Face and content validity of a Swedish translation of the Dysphagia Assessment Package. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH : JIDR 2023; 67:1174-1189. [PMID: 37531152 DOI: 10.1111/jir.13067] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 12/22/2022] [Revised: 06/26/2023] [Accepted: 07/02/2023] [Indexed: 08/03/2023]
Abstract
PURPOSE Adults born with intellectual disabilities (ID) and motor disabilities (MD) have higher risk of dysphagia and should be assessed to decrease risk of severe complications. However, standardised assessment tools in Swedish are lacking. METHODS The Dysphagia Assessment Package (DAP) was cross-culturally translated from English to Swedish (DAP-SE) and tested for content validity by an expert group. Face validity was assessed by five speech and language therapist (SLT) during meal observations (n = 10), and the clinical relevance was reported in a study-specific questionnaire. RESULTS The DAP-SE was culturally adapted within the process of translation and was found to contain clinically relevant aspects to assess and suggest further interventions for adults with ID and MD. Face and content validity was confirmed by the expert group. CONCLUSION This study, in which the DAP-SE was tested in a small sample size, provides the first indications of the instrument's validity with respect to evaluating mealtimes, swallowing function and swallowing safety in adults born with ID and MD. The study adds to the knowledge on how to translate and culturally adapt an assessment tool to clinically assess dysphagia on a complex and vulnerable patient group.
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Affiliation(s)
- A Alex
- Department of Rehabilitation Medicine, Danderyd Hospital, Stockholm, Sweden
| | - M G Lindh
- Centre for Research & Development, Uppsala University/Region Gävleborg, Gävle, Sweden
- Department of Neuroscience, Speech and Language Pathology, Uppsala University, Uppsala, Sweden
| | - S Palmcrantz
- Department of Rehabilitation Medicine, Danderyd Hospital, Stockholm, Sweden
- Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden
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11
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Jacobs NPT, Pouwels PJW, van der Krogt MM, Meyns P, Zhu K, Nelissen L, Schoonmade LJ, Buizer AI, van de Pol LA. Brain structural and functional connectivity and network organization in cerebral palsy: A scoping review. Dev Med Child Neurol 2023; 65:1157-1173. [PMID: 36750309 DOI: 10.1111/dmcn.15516] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/14/2022] [Revised: 12/10/2022] [Accepted: 12/13/2022] [Indexed: 02/09/2023]
Abstract
AIM To explore altered structural and functional connectivity and network organization in cerebral palsy (CP), by clinical CP subtype (unilateral spastic, bilateral spastic, dyskinetic, and ataxic CP). METHOD PubMed and Embase databases were systematically searched. Extracted data included clinical characteristics, analyses, outcome measures, and results. RESULTS Sixty-five studies were included, of which 50 investigated structural connectivity, and 20 investigated functional connectivity using functional magnetic resonance imaging (14 studies) or electroencephalography (six studies). Five of the 50 studies of structural connectivity and one of 14 of functional connectivity investigated whole-brain network organization. Most studies included patients with unilateral spastic CP; none included ataxic CP. INTERPRETATION Differences in structural and functional connectivity were observed between investigated clinical CP subtypes and typically developing individuals on a wide variety of measures, including efferent, afferent, interhemispheric, and intrahemispheric connections. Directions for future research include extending knowledge in underrepresented CP subtypes and methodologies, evaluating the prognostic potential of specific connectivity and network measures in neonates, and understanding therapeutic effects on brain connectivity.
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Affiliation(s)
- Nina P T Jacobs
- Department of Rehabilitation Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
- Amsterdam Movement Sciences, Rehabilitation & Development, Amsterdam, the Netherlands
| | - Petra J W Pouwels
- Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Radiology & Nuclear Medicine, Amsterdam Neuroscience, Amsterdam, the Netherlands
| | - Marjolein M van der Krogt
- Department of Rehabilitation Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
- Amsterdam Movement Sciences, Rehabilitation & Development, Amsterdam, the Netherlands
| | - Pieter Meyns
- REVAL Rehabilitation Research, Faculty of Rehabilitation Sciences, Hasselt University, Diepenbeek, Belgium
| | - Kangdi Zhu
- Department of Rehabilitation Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
| | - Loïs Nelissen
- Department of Pediatric Neurology, Emma Children's Hospital, Amsterdam UMC, location Vrije Universiteit, Amsterdam, the Netherlands
| | - Linda J Schoonmade
- Medical Library, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
| | - Annemieke I Buizer
- Department of Rehabilitation Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
- Amsterdam Movement Sciences, Rehabilitation & Development, Amsterdam, the Netherlands
- Emma Children's Hospital, Amsterdam University Medical Centers, Amsterdam, Netherlands
| | - Laura A van de Pol
- Department of Pediatric Neurology, Emma Children's Hospital, Amsterdam UMC, location Vrije Universiteit, Amsterdam, the Netherlands
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12
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Dhondt E, Dan B, Plasschaert F, Degelaen M, Dielman C, Dispa D, Ebetiuc I, Hasaerts D, Kenis S, Lombardo C, Pelc K, Wermenbol V, Ortibus E. Prevalence of cerebral palsy and factors associated with cerebral palsy subtype: A population-based study in Belgium. Eur J Paediatr Neurol 2023; 46:8-23. [PMID: 37364404 DOI: 10.1016/j.ejpn.2023.06.003] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/06/2023] [Revised: 05/30/2023] [Accepted: 06/13/2023] [Indexed: 06/28/2023]
Abstract
AIM To report on the prevalence, neuroimaging patterns, and function of children with cerebral palsy (CP) in Belgium for birth years 2007-2012, and identify distinctive risk indicators and differences in outcome between CP subtypes. METHODS Antenatal and perinatal/neonatal factors, motor and speech function, associated impairments, and neuroimaging patterns were extracted from the Belgian Cerebral Palsy Register. Prevalence was estimated per 1000 (overall, ante/perinatal, spastic, dyskinetic CP) or 10,000 (post-neonatal, ataxic CP) live births. Multinomial logistic regression analyses were performed to ascertain the effects of antenatal/perinatal/neonatal factors and neuroimaging patterns on the likelihood of dyskinetic or ataxic CP relative to spastic CP, and test the likelihood of the occurrence of impaired motor and speech function and associated impairments in dyskinetic or ataxic CP relative to spastic CP. RESULTS In total, 1127 children with CP were identified in Belgium. The birth prevalence of overall CP was 1.48 per 1000 live births. The likelihood of dyskinetic CP increases if the child was born to a mother aged ≥35 years, mechanically ventilated, and had predominant grey matter injury, while an increased likelihood of ataxic CP is associated with ≥2 previous deliveries. Children with dyskinetic and ataxic CP are more likely to function with impairments in motor, speech, and intellectual abilities. CONCLUSION Distinctive risk indicators and differences in outcome between CP subtypes were identified. These factors can be incorporated into clinical practice to facilitate early, accurate, and reliable classification of CP subtype, and may lead to individually tailored neonatal care and other (early) intervention options.
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Affiliation(s)
- Evy Dhondt
- Department of Development and Regeneration, KU Leuven, Leuven, Belgium.
| | - Bernard Dan
- Inter-University Reference Centre for Cerebral Palsy (CIRICU), Inkendaal Rehabilitation Hospital, Vlezenbeek, Belgium; Faculty of Medicine, Université Libre de Bruxelles, Brussels, Belgium
| | - Frank Plasschaert
- Cerebral Palsy Reference Centre, University Hospital Ghent, Ghent, Belgium; Human Structure and Repair, Medicine and Health Sciences, Ghent University, Ghent, Belgium
| | - Marc Degelaen
- Inter-University Reference Centre for Cerebral Palsy (CIRICU), Inkendaal Rehabilitation Hospital, Vlezenbeek, Belgium; Department of Rehabilitation Research, Vrije Universiteit Brussel, Brussels, Belgium
| | - Charlotte Dielman
- Cerebral Palsy Reference Centre Antwerp (CePRA), Ziekenhuis Netwerk Antwerpen Queen Paola Children's Hospital, Wilrijk, Belgium
| | - Delphine Dispa
- Reference Centre for Cerebral Palsy (IMOC), Cliniques Universitaires Saint-Luc, Brussels, Belgium
| | - Iulia Ebetiuc
- Inter-University Reference Centre for Cerebral Palsy (CIRICU), Hospital De La Citadelle, Liege, Belgium
| | - Danielle Hasaerts
- Inter-University Reference Centre for Cerebral Palsy (CIRICU), University Hospital Brussels, Brussels, Belgium
| | - Sandra Kenis
- Cerebral Palsy Reference Centre Antwerp (CePRA), Antwerp University Hospital, Belgium
| | - Costanza Lombardo
- Inter-University Reference Centre for Cerebral Palsy (CIRICU), Queen Fabiola Children's University Hospital (QFCUH), Brussels, Belgium
| | - Karine Pelc
- Inter-University Reference Centre for Cerebral Palsy (CIRICU), Inkendaal Rehabilitation Hospital, Vlezenbeek, Belgium
| | - Vanessa Wermenbol
- Inter-University Reference Centre for Cerebral Palsy (CIRICU), Erasmus Hospital, Brussels, Belgium
| | - Els Ortibus
- Department of Development and Regeneration, KU Leuven, Leuven, Belgium; Cerebral Palsy Reference Centre, University Hospital Leuven, Leuven, Belgium
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13
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Roostaei M, Babaee M, Alavian S, Jafari N, Rayegani SM, Behzadipour S. Effects of a multi-component virtual reality program on motor skills and functional postural control in children with hemiplegic cerebral palsy. Heliyon 2023; 9:e19883. [PMID: 37809784 PMCID: PMC10559279 DOI: 10.1016/j.heliyon.2023.e19883] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/02/2023] [Revised: 09/04/2023] [Accepted: 09/04/2023] [Indexed: 10/10/2023] Open
Abstract
Background Pediatric neurorehabilitation has recently employed virtual reality (VR) technologies as a platform to design and implement novel modalities. Aims To evaluate the feasibility of a multi-component VR-based program on motor skills and functional postural control for children with hemiplegic cerebral palsy (HCP). Methods A single-case-experimental design was conducted on eight children with HCP (12.33 ± 4.71 years and GMFCS= II, I). The VR-based program consisted of 3 sessions per week for four weeks. Timed Up and Go (TUG) test, Functional Reach Test (FRT), Pediatric Balance Scale (PBS), Activities Scale for Kids (ASK), ABILHAND-Kids, and Box and Block Test (BBT) were used to evaluate functional changes. Outcomes and results Statistical analysis showed that improvements in functional postural control were significant on at least one balance measure for seven out of eight participants during the intervention phase. For all participants, a significant increase was observed in the BBT scores. Before-after intervention analysis revealed statistically significant improvements in PBS (z = -2.52, p ≤ 0.01), ABILHAND-Kids (z = -2.25, p ≤ 0.01), and ASK (z = -2.38, p ≤ 0.01). Conclusions and implications This study provided early evidence of the effectiveness of the multi-component VR-based program in children with HCP. However, future studies with randomized controlled trial design are needed to evaluate the long-term effects and compare them with conventional rehabilitation practice.
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Affiliation(s)
- Meysam Roostaei
- Department of Occupational Therapy, School of Rehabilitation, Tehran University of Medical Sciences, Tehran, Iran
| | - Marzieh Babaee
- Physical Medicine and Rehabilitation Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran
| | - Seyedmostafa Alavian
- Department of Mechanical Engineering, Sharif University of Technology, Tehran, Iran
| | - Narjes Jafari
- Pediatric Neurology Department, Mofid Children's Hospital, Faculty of Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran
| | - Seyed Mansoor Rayegani
- Physical Medicine and Rehabilitation Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran
| | - Saeed Behzadipour
- Department of Mechanical Engineering, Sharif University of Technology, Tehran, Iran
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Gong C, Liu A, Lian B, Wu X, Zeng P, Hao C, Wang B, Jiang Z, Pang W, Guo J, Zhou S. Prevalence and related factors of epilepsy in children and adolescents with cerebral palsy: a systematic review and meta-analysis. Front Pediatr 2023; 11:1189648. [PMID: 37576141 PMCID: PMC10416728 DOI: 10.3389/fped.2023.1189648] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/19/2023] [Accepted: 07/10/2023] [Indexed: 08/15/2023] Open
Abstract
OBJECTIVE To study the worldwide prevalence and associated factors of epilepsy in children and adolescents with Cerebral Palsy (CP) and to analyze the differences between various subgroups. METHOD We identified all potential studies on the prevalence of epilepsy in children and adolescents with CP from PubMed, Web of Science, and Embase. The search time was from the establishment of the database to November 2022. Randomized effects meta-analysis models were used to calculate the prevalence of epilepsy in CP. Subgroup analysis and meta-regression were utilized to further explore heterogeneity between articles and prevalence disparities between subgroups. The funnel plot and Egger's test were used to investigate potential publication bias. RESULTS Seventy-two articles, comprising 53,969 children and adolescents with CP, were included in this study. The results indicated a total epilepsy prevalence of 38.0% (95% CI: 34.8%-41.2%) in CP. The prevalence of epilepsy was 46.4% (95% CI: 41.4%-51.5%) in clinical sample-based studies and 31.6% (95% CI: 28.7%-34.5%) in population-based studies. Meta-regression demonstrated that the sample source, neonatal seizure, family history of epilepsy, EEG or cranial imaging abnormalities, intellectual/cognitive impairment, and topographical types of CP were heterogeneous contributors to the epilepsy prevalence in CP. CONCLUSION Approximately one-third of children and adolescents with CP have epilepsy, and the sample source can significantly impact the total prevalence of epilepsy. Neonatal seizures, family history of epilepsy, EEG abnormalities, cranial imaging abnormalities, severe intellectual disability, and quadriplegia may be contributing factors to epilepsy comorbid in CP. Further study is required to verify the strength of these associations with epilepsy. This study aids in identifying the clinical characteristics of young people with CP at risk of developing epilepsy, which may assist clinicians in the early prevention and diagnosis of epilepsy within this population.Systematic Review Registration: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=367766, identifier CRD42022367766.
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Affiliation(s)
- Chao Gong
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
| | - Annan Liu
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
| | - Beibei Lian
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
| | - Xixi Wu
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
| | - Pei Zeng
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
| | - Chaoli Hao
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
| | - Bobo Wang
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
| | - Zhimei Jiang
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
- Jiamusi University Affiliated No.3 Hospital, Jiamusi, China
| | - Wei Pang
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
- Jiamusi University Affiliated No.3 Hospital, Jiamusi, China
| | - Jin Guo
- College of Rehabilitation Medicine, Jiamusi University, Jiamusi, China
- Jiamusi University Affiliated No.3 Hospital, Jiamusi, China
| | - Shaobo Zhou
- School of Science, Faculty of Engineering and Science, University of Greenwich, Medway Campus Central Avenue, Chatham Maritime, Kent, England
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15
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Sattoe JNT, Hilberink SR. Impairments and comorbidities in adults with cerebral palsy and spina bifida: a meta-analysis. Front Neurol 2023; 14:1122061. [PMID: 37533474 PMCID: PMC10390785 DOI: 10.3389/fneur.2023.1122061] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/12/2022] [Accepted: 06/30/2023] [Indexed: 08/04/2023] Open
Abstract
Introduction Aging with a childhood-onset disability, such as cerebral palsy (CP), spina bifida (SB), and muscular diseases (MD), comes along with significant impairments and comorbidities. Despite the increasing evidence an overall picture is lacking. This study aimed to review the literature about adults with CP/SB/MD and impairments and comorbidities to perform a meta-analysis. Materials and methods Embase, PubMed, Cinahl, and Google Scholar were searched (2000-2020). Search terms included adults with one of the aforementioned disabilities combined with impairments and comorbidities. If specific impairments or comorbidities were reported by at least four studies, these were included in the study. Pooled prevalence (95% Confidence Interval) of impairments/comorbidities were calculated. Results The search yielded 7,054 studies of which 95 were included in the meta-analysis (64 CP, 31 SB, 0 MD). In total estimates were calculated for 26 (CP) and 11 (SB) outcomes. In adults with CP, pain [56.4% (95%CI 48.8-63.8)], deformities [44.2% (95%CI 12.9-78.4)], intellectual disability [37.2% (95%CI 26.7-48.3)], and fatigue [36.9% (95%CI 24.6-50.1)] were most prevalent; renal disease [3.0% (95%CI 2.1-4.2)] and stroke/rheumatic diseases {4.8% (95%CI 3.4-6.5; 4.8% (95%CI 1.5-9.9)] respectively} were least prevalent. For adults with SB, bladder incontinence [60.0% (95%CI 50.5-69.2)], bowel incontinence [49.2% (95%CI 34.5-64.0)], pain [44.1% (95%CI 27.4-61.5)], and sleeping problems [30.3% (95%CI 4.7-65.8)] were most prevalent; diabetes [4.8% (95%CI 2.8-7.3)] and renal disease [8.7% (95%CI 2.0-19.9)] were least prevalent. The included studies showed large heterogeneity. Conclusions More research is needed to study health issues in adults with MD. Adults with CP or SB deal with a variety of health issues. More attention for the mental health of these adults is needed. There also is a need for accessible and adequate screening, preventive measures and clinical follow-up.
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16
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Jawed A, Mowry M. Strengthening Equitable Access to Care and Support for Children with Cerebral Palsy and Their Caregivers. CHILDREN (BASEL, SWITZERLAND) 2023; 10:994. [PMID: 37371227 DOI: 10.3390/children10060994] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 04/30/2023] [Revised: 05/27/2023] [Accepted: 05/30/2023] [Indexed: 06/29/2023]
Abstract
Cerebral palsy is one of the most prevalent groups of motor disorders affecting children and adults across the world. As increasingly more children with cerebral palsy are living longer into adulthood, it is ever more crucial to ensure access to timely and needed early intervention from the onset of diagnosis, on a continuum, to optimize medical, developmental, socio-emotional, and academic outcomes for these children over time. The American Academy of Pediatrics (AAP), in collaboration with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), substantially revised the clinical practice guidelines for cerebral palsy in 2022, after their prior publication of the guidelines in 2006. The revised guidelines account for a range of considerations that are in line with the biopsychosocial, risk and resilience, and family-centered care models as well as promote a more strengths-based approach to care. Furthermore, there is increased emphasis in the guidelines on promoting equitable access to care as part of contributing towards health equity for all children with cerebral palsy. In addition, the 2022 guidelines clearly present recommendations for earlier diagnosis of cerebral palsy, potentially as early as infancy, as the basis for activating access to early intervention services for children that can bolster their neuroplasticity and global development from an earlier age onward. We consolidate the existing literature on caregiver perceptions, beliefs and concerns surrounding earlier diagnosis of cerebral palsy and connect them to the recommendations in the revised guidelines. We also delineate several considerations surrounding education for healthcare providers and caregivers of children in navigating the chronicity of cerebral palsy in both community and healthcare contexts. There is a scant amount of literature on cerebral palsy across traditional and nontraditional sources of media in published studies, which we also review. Lastly, we present a wealth of recommendations for further research and practice that account for the revised 2022 guidelines, caregiver preferences and acceptability of care, and health equity as the bases for strengthening equitable access to care for children with cerebral palsy on a continuum as they transition into adulthood.
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Affiliation(s)
- Aysha Jawed
- Johns Hopkins Children's Center, Baltimore, MD 21287, USA
- Department of Pediatric Social Work, Johns Hopkins Children's Center, Baltimore, MD 21287, USA
| | - Michelle Mowry
- Johns Hopkins Children's Center, Baltimore, MD 21287, USA
- Department of Pediatric Nursing, Johns Hopkins Children's Center, Baltimore, MD 21287, USA
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Associated Impairments among Children with Cerebral Palsy in Rural Bangladesh-Findings from the Bangladesh Cerebral Palsy Register. J Clin Med 2023; 12:jcm12041597. [PMID: 36836130 PMCID: PMC9966186 DOI: 10.3390/jcm12041597] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/20/2022] [Revised: 02/03/2023] [Accepted: 02/05/2023] [Indexed: 02/19/2023] Open
Abstract
BACKGROUND We aimed to describe the burden, severity, and underlying factors of associated impairments among children with cerebral palsy (CP) in rural Bangladesh. METHODS This study reports findings from the Bangladesh Cerebral Palsy Register-the first population-based surveillance of children with CP in any LMIC, where children with confirmed CP aged < 18 years are registered by a multidisciplinary team following a standard protocol. Associated impairments were documented based on clinical assessment, available medical records, and a detailed clinical history provided by the primary caregivers. Descriptive analysis, as well as unadjusted and adjusted logistic regression, were completed using R. RESULTS Between January 2015 and February 2022, 3820 children with CP were registered (mean (SD) age at assessment: 7.6 (5.0) y; 39% female). Overall, 81% of children had ≥1 associated impairment; hearing: 18%, speech: 74%, intellectual: 40%, visual: 14%, epilepsy: 33%. The presence of a history of CP acquired post-neonatally and having a gross motor function classification system levels III-V significantly increased the odds of different types of associated impairments in these children. Most of the children had never received any rehabilitation services and were not enrolled in any mainstream or special education system. CONCLUSIONS The burden of associated impairments was high among children with CP, with comparatively low receipt of rehabilitation and educational services in rural Bangladesh. Comprehensive intervention could improve their functional outcome, participation, and quality of life.
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Effect of Transcranial Direct Current Stimulation versus Virtual Reality on Gait for Children with Bilateral Spastic Cerebral Palsy: A Randomized Clinical Trial. CHILDREN (BASEL, SWITZERLAND) 2023; 10:children10020222. [PMID: 36832351 PMCID: PMC9955548 DOI: 10.3390/children10020222] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/22/2022] [Revised: 01/20/2023] [Accepted: 01/22/2023] [Indexed: 02/03/2023]
Abstract
Impaired gait is a common sequela in bilateral spastic cerebral palsy. We compared the effects of two novel research interventions-transcranial direct current stimulation and virtual reality-on spatiotemporal and kinetic gait impairments in children with bilateral spastic CP. Forty participants were randomized to receive either transcranial direct current stimulation or virtual reality training. Both groups received standard-of-care gait therapy during the assigned intervention and for the subsequent 10 weeks afterward. Spatiotemporal and kinetic gait parameters were evaluated at three different times: (i) before starting the intervention, (ii) after two weeks of intervention, and (iii) 10 weeks after intervention completion. Both groups exhibited higher velocity and cadence, as well as longer stance time, step length, and stride length after intervention (p < 0.001). Only the transcranial direct current stimulation group exhibited increased maximum force and maximum peak pressure after intervention (p's ≤ 0.001), with continued improvements in spatiotemporal parameters at follow-up. The transcranial direct current stimulation group had higher gait velocities, stride length, and step length at follow-up compared to the virtual reality group (p ≤ 0.02). These findings suggest that transcranial direct current stimulation has a broader and longer-lasting effect on gait than virtual reality training for children with bilateral spastic cerebral palsy.
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Müller V, Gerdtham U, Alriksson‐Schmidt A, Jarl J. Parental decisions to divorce and have additional children among families with children with cerebral palsy: Evidence from Swedish longitudinal and administrative data. HEALTH ECONOMICS 2022; 31:2170-2186. [PMID: 35778857 PMCID: PMC9543549 DOI: 10.1002/hec.4567] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 11/26/2021] [Revised: 05/03/2022] [Accepted: 06/08/2022] [Indexed: 06/15/2023]
Abstract
This study analyzes the relationship of having a child with the early-onset disability cerebral palsy (CP) and the parental decision to divorce and to have additional children. We use longitudinal matched case-control data from multiple linked Swedish National Population Registers between 2001 and 2015 and perform Cox proportional hazards regressions with interval-censoring. Although we do not find a general excess parental divorce risk on CP relative to the comparison group without CP, we find that having a child with CP increases the risk of divorce for parents with low education. We also find that having a child with CP reduces the likelihood of having additional children, especially for mothers in the older age range (maternal age at delivery >33 years) and parents with low education. The severity level of the disability, as indicated by gross motor function, is not related to the results. These findings should be understood in the Swedish context, which provides extensive welfare support (e.g., personal assistance). If future studies would find adverse results in countries with less social care and benefits, our results may indicate that it is possible to mitigate negative consequences for the family of a child with disability.
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Affiliation(s)
- Vibeke Müller
- Department of Clinical Sciences, MalmöHealth Economics UnitLund UniversityLundSweden
| | - Ulf Gerdtham
- Department of Clinical Sciences, MalmöHealth Economics UnitLund UniversityLundSweden
- Department of EconomicsLund UniversityLundSweden
| | | | - Johan Jarl
- Department of Clinical Sciences, MalmöHealth Economics UnitLund UniversityLundSweden
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Malandraki GA, Mitchell SS, Hahn Arkenberg RE, Brown B, Craig BΑ, Burdo-Hartman W, Lundine JP, Darling-White M, Goffman L. Swallowing and Motor Speech Skills in Unilateral Cerebral Palsy: Novel Findings From a Preliminary Cross-Sectional Study. JOURNAL OF SPEECH, LANGUAGE, AND HEARING RESEARCH : JSLHR 2022; 65:3300-3315. [PMID: 35952392 PMCID: PMC9913219 DOI: 10.1044/2022_jslhr-22-00091] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/09/2022] [Revised: 04/25/2022] [Accepted: 05/16/2022] [Indexed: 06/15/2023]
Abstract
PURPOSE Our purpose was to start examining clinical swallowing and motor speech skills of school-age children with unilateral cerebral palsy (UCP) compared to typically developing children (TDC), how these skills relate to each other, and whether they are predicted by clinical/demographic data (age, birth history, lesion type, etc.). METHOD Seventeen children with UCP and 17 TDC (7-12 years old) participated in this cross-sectional study. Feeding/swallowing skills were evaluated using the Dysphagia Disorder Survey (DDS) and a normalized measure of mealtime efficiency (normalized mealtime duration, i.e., nMD). Motor speech was assessed via speech intelligibility and speech rate measures using the Test of Children's Speech Plus. Analyses included nonparametric bootstrapping, correlation analysis, and multiple regression. RESULTS Children with UCP exhibited more severe (higher) DDS scores (p = .0096, Part 1; p = .0132, Part 2) and reduced speech rate than TDC (p = .0120). Furthermore, in children with UCP, total DDS scores were moderately negatively correlated with speech intelligibility (words: r = -.6162, p = .0086; sentences: r = -.60792, p = .0096). Expressive language scores were the only significant predictor of feeding and swallowing performance, and receptive language scores were the only significant predictor of motor speech skills. CONCLUSIONS Swallowing and motor speech skills can be affected in school-age children with UCP, with wide variability of performance also noted. Preliminary cross-system interactions between swallowing, speech, and language are observed and might support the complex relationships between these domains. Further understanding these relationships in this population could have prognostic and/or therapeutic value and warrants further study.
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Affiliation(s)
- Georgia A. Malandraki
- Department of Speech, Language, and Hearing Sciences, Purdue University, West Lafayette, IN
- Weldon School of Biomedical Engineering, Purdue University, West Lafayette, IN
| | - Samantha S. Mitchell
- Department of Speech, Language, and Hearing Sciences, Purdue University, West Lafayette, IN
| | | | - Barbara Brown
- Department of Speech, Language, and Hearing Sciences, Purdue University, West Lafayette, IN
| | - Bruce Α. Craig
- Department of Statistics, Purdue University, West Lafayette, IN
| | - Wendy Burdo-Hartman
- Nationwide Children's Hospital, Columbus, OH
- Department of Pediatrics, College of Medicine, The Ohio State University, Columbus
| | - Jennifer P. Lundine
- Nationwide Children's Hospital, Columbus, OH
- Department of Speech and Hearing Sciences, The Ohio State University, Columbus
| | - Meghan Darling-White
- Department of Speech, Language, and Hearing Sciences, The University of Arizona, Tucson
| | - Lisa Goffman
- School of Behavioral and Brain Sciences, The University of Texas at Dallas, Richardson
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21
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Al-Jabri BA, Al-Amri AS, Jawhari AA, Sait RM, Talb RY. Prevalence, Types, and Outcomes of Cerebral Palsy at a Tertiary Center in Jeddah, Saudi Arabia. Cureus 2022; 14:e27716. [PMID: 35935114 PMCID: PMC9355517 DOI: 10.7759/cureus.27716] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 07/27/2022] [Indexed: 11/16/2022] Open
Abstract
Background: In developed countries, cerebral palsy (CP) is the most common neurological disorder in children. It is defined as a non-progressive disturbance to the developing brain leading to motor impairment that affects the child’s activity. CP is classified into three main subtypes: ataxic, spastic, and mixed.
Objectives: This study aimed to estimate the prevalence of CP and its subtypes in a single tertiary center located in Jeddah, Saudi Arabia.
Method: This retrospective record review study included 98 patients diagnosed with CP from 2004 to 2019. Data were extracted from the hospital medical record and assessed using various tools.
Result: The total number of patients was 98, with an estimated CP prevalence of 1.6 per 1000 lives. Most of the patients (74.8%) had spastic CP subtype, and 54.8% had quadriplegia. The mean age of the live children was 7.45 ± 3.76 years. Moreover, gastrostomy was the most favorable feeding method.
Conclusion: The prevalence of CP is almost equivalent to the national and worldwide figures. Spastic CP has the highest rates. Furthermore, the male gender has been identified as a significant risk factor for CP in the local community.
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22
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Malick WH, Butt R, Awan WA, Ashfaq M, Mahmood Q. Effects of Augmented Reality Interventions on the Function of Upper Extremity and Balance in Children With Spastic Hemiplegic Cerebral Palsy: A Randomized Clinical Trial. Front Neurol 2022; 13:895055. [PMID: 35800080 PMCID: PMC9253568 DOI: 10.3389/fneur.2022.895055] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/12/2022] [Accepted: 05/18/2022] [Indexed: 11/30/2022] Open
Abstract
Objective To determine the effects of augmented reality (AR) interventions on the function of the upper extremity (UE) and balance in children with spastic hemiplegic cerebral palsy (SHCP). Methods In total, 30 children with SHCP, aged 6 to 12 years, were randomly divided into three interventional groups. Each group received an AR game, i.e., Balance It, Bubble Pop, or Scoop'd (WonderTree, Pakistan). The UE function and balance were assessed at the baseline and after 8 weeks of intervention through the Disability of Arm, Shoulder, and Hand (DASH) questionnaire and Pediatric Balance Scale (PBS), respectively. The mixed ANOVA was used to determine the combined with-in and between-the-groups differences in the function of the upper extremity. The Wilcoxon sign ranked test was used for with-in group changes, while the Kruskal Wallis test with the bonferroni correction post-hoc analysis was used to compare the groups in terms of balance. The data were analyzed by using SPSS version 21 and the level of significance was set at p < 0.05. Paired sample t-test and Wilcoxon signed-rank test was used for analyzing the changes in the total DASH and PBS scores within the groups, respectively. One-way ANOVA was used to determine the differences between the groups in the total DASH and PBS scores, while the Kruskal Wallis test was used for the differences between the groups in the PBS items. The data were analyzed by using SPSS version 21. Results All the groups improved significantly in the total DASH and PBS scores post-intervention. A significant difference was determined in standing with one foot in front between Bubble Pop and Balance It groups (p = 0.03). The total score of PBS also showed a significant difference between Bubble Pop and Balance It groups (p = 0.02). Conclusion The AR interventions used in this study were found to be effective in improving the UE function and balance of children with SHCP. The Balance It game showed more promising results in improving the balance as compared with the other games, however, no significant difference was determined between the three AR games in terms of the UE function of the participants.
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Affiliation(s)
- Wardah Hussain Malick
- Physiotherapy Department, National Institute of Rehabilitation Medicine, Islamabad, Pakistan
- *Correspondence: Wardah Hussain Malick
| | - Rizwana Butt
- Physiotherapy Department, National Institute of Rehabilitation Medicine, Islamabad, Pakistan
| | - Waqar Ahmed Awan
- Faculty of Rehabilitation and Allied Health Sciences, Riphah College of Rehabilitation and Allied Health Sciences, Riphah International University, Islamabad, Pakistan
| | - Muhammad Ashfaq
- Physiotherapy Department, National Institute of Rehabilitation Medicine, Islamabad, Pakistan
| | - Qamar Mahmood
- Physiotherapy Department, National Institute of Rehabilitation Medicine, Islamabad, Pakistan
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23
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Bonfert MV, Jelesch E, Hartmann J, Koenig H, Warken B, Meuche A, Jung NH, Bernius P, Weinberger R, Sorg AL, von Kries R, Narayanan UG, Hoesl M, Berweck S, Schroeder AS. Test-Retest Reliability and Construct Validity of the German Translation of the Gait Outcome Assessment List (GOAL) Questionnaire for Children with Ambulatory Cerebral Palsy. Neuropediatrics 2022; 53:96-101. [PMID: 34933378 DOI: 10.1055/s-0040-1722688] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Abstract
The Gait Outcome Assessment List (GOAL) is a patient or caregiver-reported assessment of gait-related function across different domains of the International Classification of Functioning, Disability, and Health (ICF) developed for ambulant children with cerebral palsy (CP). So far, the questionnaire is only available in English. The aim of this study was to translate the GOAL into German and to evaluate its reliability and validity by studying the association between GOAL scores and gross motor function as categorized by the gross motor function classification system (GMFCS) in children with cerebral palsy (CP). The GOAL was administered to primary caregivers of n = 91 children and adolescents with CP (n = 32, GMFCS levels I; n = 27, GMFCS level II; and n = 32, GMFCS level III) and n = 15 patients were capable of independently completing the whole questionnaire (GMFCS level I). For assessing test-retest reliability, the questionnaire was completed for a second time 2 weeks after the first by the caregivers of n = 36 patients. Mean total GOAL scores decreased significantly with increasing GMFCS levels with scores of 71 (95% confidence interval [CI]: 66.90-74.77) for GMFCS level I, 56 (95% CI: 50.98-61.86) for GMFCS level II, and 45 (95% CI: 40.58-48.48) for GMFCS level III, respectively. In three out of seven domains, caregivers rated their children significantly lower than children rated themselves. The test-retest reliability was excellent as was internal consistency given the GOAL total score. The German GOAL may serve as a much needed patient-reported outcome measure of gait-related function in ambulant children and adolescents with CP.
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Affiliation(s)
- Michaela V Bonfert
- Department of Pediatric Neurology and Developmental Medicine, LMU Center for Children with Medical Complexity, Integrated Social Pediatric Center, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University (LMU), Munich, Germany
| | - Evelyn Jelesch
- Specialist Center for Paediatric Neurology, Neurorehabilitation and Epileptology, Schoen Clinic Vogtareuth, Vogtareuth, Germany
| | - Julia Hartmann
- Specialist Center for Paediatric Neurology, Neurorehabilitation and Epileptology, Schoen Clinic Vogtareuth, Vogtareuth, Germany
| | - Helene Koenig
- Department of Pediatric Neurology and Developmental Medicine, LMU Center for Children with Medical Complexity, Integrated Social Pediatric Center, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University (LMU), Munich, Germany
| | - Birgit Warken
- Department of Pediatric Neurology and Developmental Medicine, LMU Center for Children with Medical Complexity, Integrated Social Pediatric Center, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University (LMU), Munich, Germany
| | - Anne Meuche
- Department of Pediatric Neurology and Developmental Medicine, LMU Center for Children with Medical Complexity, Integrated Social Pediatric Center, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University (LMU), Munich, Germany
| | - Nicolai H Jung
- kbo-Kinderzentrum München, Social Pediatrics, Technical University of Munich, Munich, Germany
| | - Peter Bernius
- Specialist Center for Paediatric and Neuro-Orthopaedics, Schoen Clinic Muenchen Harlaching, Munich, Germany
| | - Raphael Weinberger
- Institute of Social Paediatrics and Adolescents Medicine, Ludwig-Maximilians-University (LMU), Munich, Germany
| | - Anna Lisa Sorg
- Institute of Social Paediatrics and Adolescents Medicine, Ludwig-Maximilians-University (LMU), Munich, Germany
| | - Rüdiger von Kries
- Institute of Social Paediatrics and Adolescents Medicine, Ludwig-Maximilians-University (LMU), Munich, Germany
| | - Unni G Narayanan
- Division of Orthopaedics, Hospital for Sick Children, Toronto, Ontario, Canada
| | - Matthias Hoesl
- Gait and Motion Analyis Laboratory, Schoen Clinic Vogtareuth, Vogtareuth, Germany
| | - Steffen Berweck
- Department of Pediatric Neurology and Developmental Medicine, LMU Center for Children with Medical Complexity, Integrated Social Pediatric Center, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University (LMU), Munich, Germany.,Specialist Center for Paediatric Neurology, Neurorehabilitation and Epileptology, Schoen Clinic Vogtareuth, Vogtareuth, Germany
| | - A Sebastian Schroeder
- Department of Pediatric Neurology and Developmental Medicine, LMU Center for Children with Medical Complexity, Integrated Social Pediatric Center, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University (LMU), Munich, Germany
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24
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Ogundele MO, Morton M. Classification, prevalence and integrated care for neurodevelopmental and child mental health disorders: A brief overview for paediatricians. World J Clin Pediatr 2022; 11:120-135. [PMID: 35433298 PMCID: PMC8985496 DOI: 10.5409/wjcp.v11.i2.120] [Citation(s) in RCA: 10] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/23/2021] [Revised: 10/29/2021] [Accepted: 01/13/2022] [Indexed: 02/06/2023] Open
Abstract
'Neurodevelopmental disorders' comprise a group of congenital or acquired long-term conditions that are attributed to disturbance of the brain and or neuromuscular system and create functional limitations, including autism spectrum disorder, attention deficit/ hyperactivity disorder, tic disorder/ Tourette's syndrome, developmental language disorders and intellectual disability. Cerebral palsy and epilepsy are often associated with these conditions within the broader framework of paediatric neurodisability. Co-occurrence with each other and with other mental health disorders including anxiety and mood disorders and behavioural disturbance is often the norm. Together these are referred to as neurodevelopmental, emotional, behavioural, and intellectual disorders (NDEBIDs) in this paper. Varying prevalence rates for NDEBID have been reported in developed countries, up to 15%, based on varying methodologies and definitions. NDEBIDs are commonly managed by either child health paediatricians or child/ adolescent mental health (CAMH) professionals, working within multidisciplinary teams alongside social care, education, allied healthcare practitioners and voluntary sector. Fragmented services are common problems for children and young people with multi-morbidity, and often complicated by sub-threshold diagnoses. Despite repeated reviews, limited consensus among clinicians about classification of the various NDEBIDs may hamper service improvement based upon research. The recently developed "Mental, Behavioural and Neurodevelopmental disorder" chapter of the International Classification of Diseases-11 offers a way forward. In this narrative review we search the extant literature and discussed a brief overview of the aetiology and prevalence of NDEBID, enumerate common problems associated with current classification systems and provide recommendations for a more integrated approach to the nosology and clinical care of these related conditions.
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Affiliation(s)
- Michael O Ogundele
- Department of Community Paediatrics, Bridgewater Community Healthcare NHS Foundation Trust, Runcorn WA7 1TW, Halton, United Kingdom
| | - Michael Morton
- Institute of Health & Wellbeing, University of Glasgow, Child and Adolescent Psychiatry, Yorkhill Hospital, Glasgow G3 8SJ, United Kingdom
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25
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Miao H, Mathur AM, Aravamuthan BR. Spasticity and Dystonia are Underidentified in Young Children at High Risk for Cerebral Palsy. J Child Neurol 2022; 37:105-111. [PMID: 34866453 PMCID: PMC9650959 DOI: 10.1177/08830738211059683] [Citation(s) in RCA: 12] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
BACKGROUND Early spasticity and dystonia identification in cerebral palsy is critical for guiding diagnostic workup and prompting targeted treatment early when it is most efficacious. However, differentiating spasticity from dystonia is difficult in young children with cerebral palsy. METHODS We sought to determine spasticity and dystonia underidentification rates in children at high risk for cerebral palsy (following neonatal hypoxic-ischemic encephalopathy) by assessing how often child neurologists identified hypertonia alone versus specifying the hypertonia type as spasticity and/or dystonia by age 5 years. RESULTS Of 168 children, 63 developed cerebral palsy and hypertonia but only 19 (30%) had their hypertonia type specified as spasticity and/or dystonia by age 5 years. CONCLUSIONS Child neurologists did not specify the type of hypertonia in a majority of children at high risk of cerebral palsy. Because early tone identification critically guides diagnostic workup and treatment of cerebral palsy, these results highlight an important gap in current cerebral palsy care.
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Affiliation(s)
- Hanyang Miao
- Department of Neurology, Division of Pediatric Neurology, Washington University School of Medicine and St. Louis Children’s Hospital, St. Louis, Missouri, USA
| | - Amit M. Mathur
- Department of Pediatrics, Division of Neonatal-Perinatal Medicine, St. Louis University and Cardinal Glennon Children’s Hospital, St. Louis, Missouri, USA
| | - Bhooma R. Aravamuthan
- Department of Neurology, Division of Pediatric Neurology, Washington University School of Medicine and St. Louis Children’s Hospital, St. Louis, Missouri, USA
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26
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Mangamba DCK, Enyama D, Foko LPK, Tankou J, Njinkui DN, Essome H, Mangamba LME, Eposse Ekoube C, Betoko RM, Eboumbou PE, Njankoua YM, Penda CI. Epidemiological, clinical, and treatment-related features of children with cerebral palsy in Cameroon: A hospital-based study. Arch Pediatr 2022; 29:219-224. [PMID: 35094907 DOI: 10.1016/j.arcped.2022.01.006] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/23/2021] [Revised: 11/14/2021] [Accepted: 01/13/2022] [Indexed: 10/19/2022]
Abstract
BACKGROUND Pediatric cerebral palsy (CP) remains a poorly studied public health problem in sub-Saharan Africa, especially in Cameroon. This study aimed at determining the epidemiological, clinical, and treatment-related characteristics of CP in Cameroonian children. METHODS A cross-sectional study was conducted at the pediatric department of the Douala Gynaeco-Obstetric and Pediatric Hospital (DGOPH). Medical records of children attending the department during the study period were reviewed. Only medical records of children aged from 3 months to 15 years and diagnosed with CP were included. Parents/guardians of children presenting with CP were contacted and invited to come with their children to the DGOPH where they were examined by a pediatric neurologist. A questionnaire designed for the study was used to collect sociodemographic, clinical, paraclinical, and treatment data for each child. RESULTS Out of the 4064 medical records reviewed, CP was diagnosed in 198 children (4.86%). These children were predominantly male (53.6%), aged 3-24 months (54.0%). Perinatal disorders were the main CP etiologies, especially neonatal asphyxia (55.1%), jaundice (32.8%), and neonatal infections (25.8%). Most of the children were born at term (81.6%) and by vaginal delivery (62.6%), with a normal birth weight (83.2%). Several comorbidities were found including speech delay (74.2%) and epilepsy (34.4%). The patients with CP presented predominantly with the spastic form of the disease, especially spastic quadriplegia (44.3%). Less than half of the children were managed at hospital, while the majority of parents were following various traditional treatments. CONCLUSION Addressing preventable causes of CP and improving awareness in the population will be of great help to reduce CP in Cameroon.
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Affiliation(s)
- D C Kedy Mangamba
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - D Enyama
- Faculty of Medicine and Pharmaceutical Sciences, University of Dschang, Dschang, Cameroon.
| | - L P Kojom Foko
- Faculty of Science, University of Douala, Douala, Cameroon
| | - J Tankou
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - D Noukeu Njinkui
- Faculty of Medicine and Pharmaceutical Sciences, University of Dschang, Dschang, Cameroon
| | - H Essome
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - L M Endale Mangamba
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - C Eposse Ekoube
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - R Mbono Betoko
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - P Epée Eboumbou
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - Y Mapoure Njankoua
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
| | - C I Penda
- Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
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27
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Rodby-Bousquet E, Agustsson A. Postural Asymmetries and Assistive Devices Used by Adults With Cerebral Palsy in Lying, Sitting, and Standing. Front Neurol 2021; 12:758706. [PMID: 34938261 PMCID: PMC8685523 DOI: 10.3389/fneur.2021.758706] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/14/2021] [Accepted: 11/16/2021] [Indexed: 11/13/2022] Open
Abstract
Purpose: To describe the use of assistive devices and postural asymmetries in lying, sitting and standing positions in adults with cerebral palsy, and to analyze postural asymmetries and any associations with their ability to maintain or change position and time in these positions. Methods: A cross-sectional study based on data from the Swedish Cerebral Palsy follow-up program of 1,547 adults aged 16-76 years, at Gross Motor Function Classification System (GMFCS) levels I (n = 330), II (n = 323), III (n = 235), IV (n = 298), and V (n = 361). Assistive devices such as wheelchairs, seating systems, adjustable beds, standing equipment and time in each position were reported. The Posture and Postural Ability Scale was used to identify asymmetries and rate the ability to maintain or change position. Binary logistic regression models were used to estimate odds ratios (OR) for postural asymmetries in supine, sitting and standing. Results: Assistive devices were used by 63% in sitting (range 5-100% GMFCS levels I-V), 42% in lying (4-92% levels I-V), and 32% in standing (2-70% levels II-V). Wheelchairs were used as seating systems by 57%. Most adults had postural asymmetries in supine (75%; range 35-100% levels I-V), sitting (81%; 50-99% levels I-V) and standing (88%; 65-100% levels I-V). Men were more likely than women to have postural asymmetries, and the likelihood of postural asymmetries increased with age, GMFCS levels and inability to change position. Inability to maintain position increased the probability of postural asymmetries in all positions from OR 2.6 in standing to OR 8.2 in lying and OR 13.1 in sitting. Conclusions: Almost twice as many adults used assistive devices in sitting than in lying or standing. Two thirds of the adults who used standing devices used it for <1 h per day, indicating that they might spend the remaining 23 out of 24 h per day either sitting or lying. Asymmetric postures were frequent across all ages and were highly associated with inability to change or maintain position.
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Affiliation(s)
- Elisabet Rodby-Bousquet
- Centre for Clinical Research, Uppsala University-Region Västmanland, Västerås, Sweden.,Department of Clinical Sciences Lund, Orthopaedics, Lund University, Lund, Sweden
| | - Atli Agustsson
- Research Centre of Movement Science, School of Health Sciences, University of Iceland, Reykjavík, Iceland
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28
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Pettersson K, Rodby-Bousquet E. Living Conditions and Social Outcomes in Adults With Cerebral Palsy. Front Neurol 2021; 12:749389. [PMID: 34744986 PMCID: PMC8567859 DOI: 10.3389/fneur.2021.749389] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/29/2021] [Accepted: 09/21/2021] [Indexed: 01/12/2023] Open
Abstract
Objectives: To analyse the living conditions and social outcomes (housing, engagement in employment or higher education, access to personal assistance and having a partner) in adults with cerebral palsy (CP) relative to their age, sex, communication ability, and motor skills. Methods: Cross-sectional registry-based study of 1,888 adults (1,030 males/858 females) with CP in the Swedish CP follow-up programme, median age 25 years (range 16–78 y). Type of housing, occupation, access to personal assistance and having a partner were analysed relative to their age, sex, and the classification systems for Gross Motor Function (GMFCS) and Communication Function (CFCS). Binary logistic regression models were used to calculate odds ratios (OR) for independent living, competitive employment, and having a partner. Results: Most of the 25- to 29-year olds (55.6%) lived independently, increasing to 72.4% in 40- to 49-year olds, while the majority (91.3%) of those under 20 years lived with their parents. Independent living was almost equal in adults at GMFCS levels I (40.2%) and V (38.6%). This parity was explained by access to personal assistance, which increased with higher GMFCS and CFCS levels. Personal assistance of >160 hours/week was associated with a high probability of independent living (OR 57). In the age span 20–64 years, 17.5% had competitive employment and 45.2% attended activity centres for people with intellectual disabilities. In the younger age group up to 24 years old, 36.9% went to mainstream/higher education and 20.5% went to special schools. In total, 13.4% had a partner and 7.8% lived together. Slightly more women than men had a partner, and most individuals were classified at CFCS level I. Conclusion: Only one in eight adults with CP has a partner, and one in six has competitive employment. Access to personal assistance is the single most important factor for independent living. It is vital to support adults with CP throughout their lifespan to achieve the best possible outcomes in all aspects of life.
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Affiliation(s)
- Katina Pettersson
- Centre for Clinical Research, Uppsala University/Region Västmanland, Västerås, Sweden
| | - Elisabet Rodby-Bousquet
- Centre for Clinical Research, Uppsala University/Region Västmanland, Västerås, Sweden.,Department of Clinical Sciences, Lund University, Lund, Sweden
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29
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Stadskleiv K, van Walsem MR, Andersen GL, Bergqvist L, Bøttcher L, Christensen K, Heyerdahl D, Hollung SJ, Høye H, Jahnsen R, Klevberg GL, Lindquist B, Passmark H, Rike PO, Rodby-Bousquet E, Alriksson-Schmidt AI. Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CP Cog-Adult Follow-Up Protocol. Front Neurol 2021; 12:710440. [PMID: 34630285 PMCID: PMC8492925 DOI: 10.3389/fneur.2021.710440] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/16/2021] [Accepted: 08/19/2021] [Indexed: 11/13/2022] Open
Abstract
Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.
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Affiliation(s)
- Kristine Stadskleiv
- Department of Special Needs Education, University of Oslo, Oslo, Norway
- Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway
| | - Marleen R. van Walsem
- Department of Neurohabilitation, Oslo University Hospital, Oslo, Norway
- Center for Habilitation and Rehabilitation Models and Services, Institute of Health and Society, University of Oslo, Oslo, Norway
| | - Guro L. Andersen
- Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Vestfold Hospital Trust, Tønsberg, Norway
| | - Lena Bergqvist
- Unit of Occupational Therapy, Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
| | - Louise Bøttcher
- Danish School of Education, Aarhus University, Copenhagen, Denmark
| | | | | | - Sandra Julsen Hollung
- Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Vestfold Hospital Trust, Tønsberg, Norway
| | | | - Reidun Jahnsen
- Center for Habilitation and Rehabilitation Models and Services, Institute of Health and Society, University of Oslo, Oslo, Norway
- Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway
| | - Gunvor L. Klevberg
- Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway
| | | | - Henrik Passmark
- The Cerebral Palsy Surveillance Programme (CPUP), User board, Lund, Sweden
| | - Per-Ola Rike
- Department of Research, Sunnaas Rehabilitation Hospital, Nesoddtangen, Norway
| | - Elisabet Rodby-Bousquet
- Center for Clinical Research, Uppsala University-Region Västmanland, Västerås, Sweden
- Department of Clinical Sciences Lund, Orthopaedics, Lund University, Lund, Sweden
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van Heijningen VG, Cardol M, van Heijningen-Tousain HJM, Oosterveer DM, van Markus-Doornbosch F, Sattoe JNT, van der Holst M, Hilberink SR. Aging With Cerebral Palsy: A Photovoice Study Into Citizenship. Front Neurol 2021; 12:729509. [PMID: 34531818 PMCID: PMC8439253 DOI: 10.3389/fneur.2021.729509] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/23/2021] [Accepted: 07/23/2021] [Indexed: 11/29/2022] Open
Abstract
Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process. Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis. Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44-79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of "meanings of citizenship." The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively. Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship.
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Affiliation(s)
- Vera G. van Heijningen
- Research Centre Innovations in Care, Rotterdam University of Applied Science, Rotterdam, Netherlands
| | - Mieke Cardol
- Research Centre Innovations in Care, Rotterdam University of Applied Science, Rotterdam, Netherlands
| | | | | | | | - Jane N. T. Sattoe
- Research Centre Innovations in Care, Rotterdam University of Applied Science, Rotterdam, Netherlands
| | - Menno van der Holst
- Basalt Rehabilitation, Hague/Leiden, Netherlands
- Department of Orthopaedics, Rehabilitation and Physical Therapy, Leiden University Medical Center, Leiden, Netherlands
| | - Sander R. Hilberink
- Research Centre Innovations in Care, Rotterdam University of Applied Science, Rotterdam, Netherlands
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Avagyan A, Mkrtchyan H, Shafa FA, Mathew JA, Petrosyan T. Effectiveness and Determinant Variables of Augmentative and Alternative Communication Interventions in Cerebral Palsy Patients with Communication Deficit: a Systematic Review. Codas 2021; 33:e20200244. [PMID: 34378726 DOI: 10.1590/2317-1782/20202020244] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/13/2020] [Accepted: 09/20/2020] [Indexed: 11/21/2022] Open
Abstract
PURPOSE Assess the effectiveness of augmentative and alternative communication (AAC) interventions in patients with CP and to reveal determinant variables of main intervention outcomes: receptive and expressive language. RESEARCH STRATEGIES The search was performed in following databases: MEDLINE (Ovid); PubMed (NLM); Embase (Ovid); Cochrane Database of Systematic Reviews; Cumulative Index to Nursing and Allied Health Literature; Database of Abstracts of Reviews of Effects; Cochrane Central Register of Controlled Trials; Health Technology Assessment database and PEDro. SELECTION CRITERIA Full-text and peer-reviewed studies in English studying the effectiveness of AAC in patients with cerebral palsy were included. Studies with patients (<18 years) diagnosed with CP were included. DATA ANALYSIS A narrative analysis was conducted to evaluate the efficacy of AAC methods. A random-effects model meta-analysis was used to assess determinants of AAC intervention outcomes. RESULTS The online database and manual reference search revealed 445 records. Nine studies investigating a total of 294 subjects with CP met predefined eligibility criteria: 4 studies with single subject, multiple baseline research designs, 3 longitudinal cohort studies, 1 case control study and 1 case series. Results revealed moderate-quality evidence that AAC interventions improve the receptive and expressive communication skills in patients with CP. The random-effects model meta-analysis revealed the power of identified determinant variables affecting the AAC intervention outcomes. CONCLUSION Diversity of CP patients requires proper analysis of determinant variables to ensure the efficacy of AAC assessment and intervention. More studies of high methodological and practical quality assessing the efficacy of AAC interventions are needed to clarify the evidence.
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Affiliation(s)
| | - Hasmik Mkrtchyan
- Department of Speech and Rehabilitation Therapy, Armenian State Pedagogical University after Khachatur Abovyan - ASPU - Yerevan, Armenia
| | - Fatemeh Alsadat Shafa
- Technologies for Management of Health Ltd - Yerevan, Armenia.,School of Medicine, Yerevan Haybusak University - Yerevan, Armenia
| | - Joan Alexandra Mathew
- Technologies for Management of Health Ltd - Yerevan, Armenia.,School of Public Health, American University of Armenia - Yerevan, Armenia
| | - Tigran Petrosyan
- Department of Speech and Rehabilitation Therapy, Armenian State Pedagogical University after Khachatur Abovyan - ASPU - Yerevan, Armenia.,Technologies for Management of Health Ltd - Yerevan, Armenia
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32
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Himmelmann K. The cerebral palsy panorama study in western Sweden: More associated impairments in cerebral palsy observed. Acta Paediatr 2021; 110 Suppl 472:25-26. [PMID: 34240766 DOI: 10.1111/apa.15926] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/28/2022]
Affiliation(s)
- Kate Himmelmann
- Department of Paediatrics Queen Silvia Children’s Hospital University of Gothenburg Gothenburg Sweden
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Jonsson U, Eek MN, Sunnerhagen KS, Himmelmann K. Changes in walking ability, intellectual disability, and epilepsy in adults with cerebral palsy over 50 years: a population-based follow-up study. Dev Med Child Neurol 2021; 63:839-845. [PMID: 33772773 DOI: 10.1111/dmcn.14871] [Citation(s) in RCA: 15] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 02/25/2021] [Indexed: 01/01/2023]
Abstract
AIM To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50 years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype. METHOD This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016. RESULTS At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication. INTERPRETATION Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50 years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown.
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Affiliation(s)
- Ulrica Jonsson
- Region Västra Götaland, Habilitation and Health, Gothenburg, Sweden.,Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
| | - Meta Nyström Eek
- Regional Rehabilitation Centre, Queen Silvia Children's Hospital, Gothenburg, Sweden
| | - Katharina Stibrant Sunnerhagen
- Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
| | - Kate Himmelmann
- Regional Rehabilitation Centre, Queen Silvia Children's Hospital, Gothenburg, Sweden.,Department of Pediatrics, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
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What Happens to Our Neuromuscular Patients in Adulthood: Pathway to Independence and Maximal Function. J Pediatr Orthop 2021; 41:S87-S89. [PMID: 34096544 DOI: 10.1097/bpo.0000000000001779] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/07/2023]
Abstract
BACKGROUND Children with neuromuscular disorders regularly seek care from pediatric orthopaedic surgeons. These conditions can have a significant impact on the growth and development of children and their function and well-being as adults. Questions exist about the long-term outcomes of musculoskeletal interventions performed during childhood. METHODS A search of recent literature pertaining to the musculoskeletal and functional consequences of cerebral palsy, spina bifida, Duchenne muscular dystrophy, and spinal muscle atrophy was performed. Information from those articles was combined with the experience of the authors and their institutions. RESULTS Neuromuscular conditions can result in limb and spine deformities that lead to impaired physical function. Orthopaedic interventions during childhood can improve function and well-being and can be durable into adulthood. Unfortunately, many individuals with these conditions transition to adult health care that lacks the informed, collaborative multidisciplinary care they received as children. This can lead to unmet health care needs and a shortage of long-term natural history and outcome studies that would inform the care of children today. CONCLUSIONS Adults with childhood-onset neuromuscular conditions need, and deserve, dedicated health care systems that include the best aspects of the care they received as children. Pediatric orthopaedic surgeons have a role in promoting the development of such systems and a responsibility to learn from their adult patients. LEVEL OF EVIDENCE Expert Opinion.
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Ehrlich-Jones L, Durkin J, Byrne R, Todd A, Reis JP, Wolfman J, Gaebler-Spira D, Marciniak C. Breast Health Experiences in Women with Cerebral Palsy: A Qualitative Approach. ACTA ACUST UNITED AC 2021; 2:195-200. [PMID: 34235506 PMCID: PMC8243704 DOI: 10.1089/whr.2020.0115] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 04/27/2021] [Indexed: 11/16/2022]
Abstract
Background: All women, regardless of disability status, should receive screening for breast cancer. In 2010, only 61.4% of women with disabilities (WWD) received a mammogram in the past 2 years compared to 75% of women without disabilities. The purpose of this study is to explore breast cancer screening experiences of women with cerebral palsy (CP) with the aim of identifying factors that could improve screening rates for WWD. Methods: Thirty women with CP, 22–72 years of age, residing in New York, Chicago, or Los Angeles areas participated in individual or group interviews about breast health. Twenty-five of the participants identified themselves as white, and one self-identified as Hispanic or Latina. Facilitators used a semistructured guide across the three sites. Qualitative analysis utilized an iterative coding process to generate themes related to breast health. Results: We identified six predominant themes in these interviews, which revolved around physical, environmental, and emotional barriers and facilitators. Within each theme, we identified subthemes. Physical barriers included the most highly identified subthemes of age, pain, holding breath, holding still, spasticity, standing, fatigue, and positioning. Self-advocacy and communication between the health care professional and the patient were the most common subthemes identified among the emotional facilitators. Conclusion: Women with CP perceive a variety of issues impacting breast health. These findings are multifaceted and suggest that improving screening rates for women with CP should address these barriers and facilitators.
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Affiliation(s)
- Linda Ehrlich-Jones
- Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago, Illinois, USA.,Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
| | - Jordyn Durkin
- Division of Pulmonary and Critical Care Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
| | - Rachel Byrne
- Cerebral Palsy Foundation, New York, New York, USA.,Division of Pediatric Orthopedics, Columbia University Medical Center, New York-Presbyterian Morgan Stanley Children's Hospital, New York, New York, USA
| | - Allison Todd
- Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago, Illinois, USA
| | | | - Judith Wolfman
- Department of Radiology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.,Lynn Sage Breast Center, Chicago, Illinois, USA
| | - Deborah Gaebler-Spira
- Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.,Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.,Department of Pediatrics, and Shirley Ryan AbilityLab, Chicago, Illinois, USA
| | - Christina Marciniak
- Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.,Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.,Attending Physician, Shirley Ryan AbilityLab, Chicago, Illinois, USA
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Izzah AN, Irwanto I, Andriati A, Gunawan PI. Assessment Quality of Life in Children with Cerebral Palsy, Ages 2–18 Years. JURNAL BERKALA EPIDEMIOLOGI 2021. [DOI: 10.20473/jbe.v9i22021.166-174] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/22/2022] Open
Abstract
Background: Cerebral palsy is non-progressive disorder that can cause limited movement and lead to postural deformity in children, which can affects all the psychosocial aspects and, thus, impacts children’s’ quality of life as well. Assessment of quality of life is important to evaluate suitable intervention measures for children with cerebral palsy. Purpose: This study aims to investigate the domains and determine the quality of life in children with cerebral palsy between ages 2 and 18. Methods: This was a descriptive study that employed a cross-sectional design approach. Primary data was obtained through a questionnaire. This study used the pediatric quality of life inventory (PedsQL)TM 3.0 cerebral palsy module. The study was conducted from November 2019 to February 2020. The data was collected at the Department of Medical Rehabilitation at the Dr. Soetomo Hospital, Peduli CP Foundation, and the Happy CP Community. This study involved 52 subjects, aged 2–18 years. Results: Almost all of the subjects (76.90%) had an impaired or poor quality of life. From the seven existing domains, only one domain received a good score: the domain of movement and balance. Conclusion: Based on the PedsQLTM 3.0 cerebral palsy module, parents reported that the quality of life in children (ages 2–18 years) having cerebral palsy was still low. Only the movement and balance domain got a good score.
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Ng ZM, Lin JB, Khoo PC, Rajadurai VS, Chan DWS, Ong HT, Wong J, Choong CT, Lim KW, Lim KBL, Yeo TH. Causes, functional outcomes and healthcare utilisation of people with cerebral
palsy in Singapore. ANNALS OF THE ACADEMY OF MEDICINE, SINGAPORE 2021. [DOI: 10.47102/annals-acadmedsg.2020489] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/13/2023]
Abstract
Introduction: A voluntary cerebral palsy (CP) registry was established in 2017 to describe the clinical
characteristics and functional outcomes of CP in Singapore.
Methods: People with CP born after 1994 were recruited through KK Women’s and Children’s Hospital,
National University Hospital and Cerebral Palsy Alliance Singapore. Patient-reported basic demographics,
service utilisation and quality of life measures were collected with standardised questionnaires. Clinical
information was obtained through hospital medical records.
Results: Between 1 September 2017 and 31 March 2020, 151 participants were recruited. A majority
(n=135, 89%) acquired CP in the pre/perinatal period, where prematurity (n=102, 76%) and the need
for emergency caesarean section (n=68, 50%) were leading risk factors. Sixteen (11%) of the total
participants had post-neonatally acquired CP. For predominant CP motor types, 109 (72%) had a spastic
motor type; 32% with spastic mono/hemiplegia, 41% diplegia, 6% triplegia and 21% quadriplegia.
The remaining (42, 27.8%) had dyskinetic CP. Sixty-eight (45.0%) participants suffered significant
functional impairment (Gross Motor Functional Classification System levels IV–V). Most participants
(n=102, 67.5%) required frequent medical follow-up (≥4 times a year).
Conclusion: Optimisation of pre- and perinatal care to prevent and manage prematurity could reduce the
burden of CP and their overall healthcare utilisation.
Keywords: Cerebral palsy, functional outcomes, neonatal, registry
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Affiliation(s)
- Zhi Min Ng
- KK Women’s and Children’s Hospital, Singapore
| | - Jeremy B Lin
- National University of Singapore and Khoo Teck Puat-National University Children’s Medical Institute, National University Health System, Singapore
| | | | | | | | - Hian Tat Ong
- National University of Singapore and Khoo Teck Puat-National University Children’s Medical Institute, National University Health System, Singapore
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McConnell K, Livingstone E, Perra O, Kerr C. Population-based study on the prevalence and clinical profile of adults with cerebral palsy in Northern Ireland. BMJ Open 2021; 11:e044614. [PMID: 33419918 PMCID: PMC7798667 DOI: 10.1136/bmjopen-2020-044614] [Citation(s) in RCA: 16] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/08/2020] [Revised: 12/10/2020] [Accepted: 12/15/2020] [Indexed: 12/21/2022] Open
Abstract
OBJECTIVES This study aimed to report the prevalence and clinical characteristics of adults with cerebral palsy (CP) in a geographically defined region of the UK. DESIGN AND SETTING Cross-sectional study using the Northern Ireland Cerebral Palsy Register (NICPR). PARTICIPANTS All validated cases known to the NICPR, born 1981-2001 and alive and resident in Northern Ireland at age 19 years were included. RESULTS The study included 1218 persons with CP aged 19-39 years, 46 of whom died in adulthood. The prevalence of CP was 2.38 per 1000. The majority of cases had spastic CP (n=1132/1218, 93%) and could walk (n=949/1218, 78%). Those that died in adulthood typically had bilateral spastic CP (n=39/46) and used a wheelchair (n=40/46). CONCLUSION The prevalence of CP in adults is similar to other common neurological conditions such as multiple sclerosis and Parkinson's disease. The needs of adults with CP vary widely with almost half having two or more associated impairments that may require multiprofessional and multiagency coordination. Results from this study can be used to inform transformation of health and care services for adults with CP.
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Affiliation(s)
- Karen McConnell
- School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK
| | | | - Oliver Perra
- School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK
| | - C Kerr
- School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK
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Assessment of adult patients with cerebral palsy. Turk J Phys Med Rehabil 2020; 66:429-435. [PMID: 33364563 PMCID: PMC7756828 DOI: 10.5606/tftrd.2020.5614] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/30/2019] [Accepted: 03/05/2020] [Indexed: 02/03/2023] Open
Abstract
Objectives The aim of this study was to evaluate health problems, accommodation, and mobility of adult patients with cerebral palsy (CP). Patients and methods Between September 2018 and September 2019, a total of 70 adult CP patients (37 males, 33 females; mean age 29.4±10.2 years; range, 19 to 68 years) who were admitted to our clinic were included. Accommodation, education status, mental state, comorbidities, spasticity, contracture, deformity, and mobility of the patients were evaluated. Results Of the patients, 24.3% were diplegic, 21.4% were hemiplegic, 32.9% were tetraplegic, 15.7% were dyskinetic, and 5.7% had mixed form of CP. Among the patient, 38.6% had normal mental ability and 21.4% had severe mental retardation. A total of 92.9% of the patients were living with their family, 85.7% were unemployed, 10% were illiterate, and 21.4% had no health problems. Speech disorder was the most common health issue in 52.9% of the patients. Other health concerns included sensory problems, epilepsy, bladder/intestinal problems, nutritional problems, and respiratory and skin problems. The ratio of pain was 31.4%. Mild deformity was present in 54.3% of the patients, 43.7% were wheelchair-dependent, and 25.7% were Gross Motor Function Classification System (GMFCS) Level V. Conclusion Recognition and understanding health problems and living conditions of adult patients with CP would be useful both in determining the treatment goals of pediatric CP patients and in improving the quality of life of adult CP patients.
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Liew Z, von Ehrenstein OS, Ling C, Yuan Y, Meng Q, Cui X, Park AS, Uldall P, Olsen J, Cockburn M, Ritz B. Ambient Exposure to Agricultural Pesticides during Pregnancy and Risk of Cerebral Palsy: A Population-Based Study in California. TOXICS 2020; 8:E52. [PMID: 32751992 PMCID: PMC7560316 DOI: 10.3390/toxics8030052] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 06/01/2020] [Revised: 07/26/2020] [Accepted: 07/28/2020] [Indexed: 12/13/2022]
Abstract
Cerebral palsy (CP) is the most common neuro-motor disability in young children. Disruptions of maternal hormone function during pregnancy have been linked to CP risk. We investigated whether prenatal exposure to pesticide compounds with endocrine-disrupting action affect CP risk. We conducted a case-control study of 3905 CP cases and 39,377 controls born between 1998 and 2010 in California to mothers who lived in proximity (within 2 km) to any agricultural pesticide application recorded in the California Pesticide Use Reporting (PUR) system. We focused on 23 pesticides considered endocrine disruptors that are frequently used, and we found that exposure to any of the 23 pesticides in the first trimester was associated with elevated CP risks in female offspring (OR = 1.19; 95% CI: 1.05-1.35) but not males (OR = 0.99; 95% CI: 0.89-1.09) compared to the unexposed offspring. Positive associations were estimated for 15 pesticides suspected to affect the estrogen and 7 pesticides suspected to affect the thyroid hormone system. Our study suggests that first trimester exposure to pesticides that are suspected endocrine disruptors are associated with CP risk in female offspring. Pesticide exposures in early pregnancy may have sex-specific influences on the neuro-motor development of the fetus by interfering with endocrine systems.
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Affiliation(s)
- Zeyan Liew
- Department of Environmental Health Sciences, Yale School of Public Health, New Haven, CT 06510, USA
- Yale Center for Perinatal, Pediatric, and Environmental Epidemiology, Yale School of Public Health, New Haven, CT 06510, USA
| | - Ondine S. von Ehrenstein
- Department of Community Health Sciences, Fielding School of Public Health, University of California, Los Angeles (UCLA), Los Angeles, CA 90095, USA;
- Department of Epidemiology, Fielding School of Public Health, UCLA, Los Angeles, CA 90095, USA; (C.L.); (Y.Y.); (Q.M.); (A.S.P.); (B.R.)
| | - Chenxiao Ling
- Department of Epidemiology, Fielding School of Public Health, UCLA, Los Angeles, CA 90095, USA; (C.L.); (Y.Y.); (Q.M.); (A.S.P.); (B.R.)
| | - Yuying Yuan
- Department of Epidemiology, Fielding School of Public Health, UCLA, Los Angeles, CA 90095, USA; (C.L.); (Y.Y.); (Q.M.); (A.S.P.); (B.R.)
| | - Qi Meng
- Department of Epidemiology, Fielding School of Public Health, UCLA, Los Angeles, CA 90095, USA; (C.L.); (Y.Y.); (Q.M.); (A.S.P.); (B.R.)
| | - Xin Cui
- Perinatal Epidemiology and Health Outcomes Research Unit, Division of Neonatology, Department of Pediatrics, Stanford University School of Medicine and Lucile Packard Children’s Hospital, Palo Alto, CA 94305, USA;
- California Perinatal Quality Care Collaborative, Palo Alto, CA 94305, USA
| | - Andrew S. Park
- Department of Epidemiology, Fielding School of Public Health, UCLA, Los Angeles, CA 90095, USA; (C.L.); (Y.Y.); (Q.M.); (A.S.P.); (B.R.)
| | - Peter Uldall
- Department of Paediatrics, Copenhagen University Hospital, Rigshospitalet, 2100 Copenhagen, Denmark;
| | - Jørn Olsen
- Department of Clinical Epidemiology, Aarhus University Hospital, 8000 C Aarhus, Denmark;
| | - Myles Cockburn
- Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA 90033, USA;
- Department of Epidemiology, Colorado School of Public Health, University of Colorado, Aurora, CO 80045, USA
- Colorado Comprehensive Cancer Center, University of Colorado, Aurora, CO 80045, USA
| | - Beate Ritz
- Department of Epidemiology, Fielding School of Public Health, UCLA, Los Angeles, CA 90095, USA; (C.L.); (Y.Y.); (Q.M.); (A.S.P.); (B.R.)
- Department of Neurology, School of Medicine, UCLA, Los Angeles, CA 90095, USA
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Araneda R, Sizonenko SV, Newman CJ, Dinomais M, Le Gal G, Ebner-Karestinos D, Paradis J, Klöcker A, Saussez G, Demas J, Bailly R, Bouvier S, Nowak E, Guzzetta A, Riquelme I, Brochard S, Bleyenheuft Y. Protocol of changes induced by early Hand-Arm Bimanual Intensive Therapy Including Lower Extremities (e-HABIT-ILE) in pre-school children with bilateral cerebral palsy: a multisite randomized controlled trial. BMC Neurol 2020; 20:243. [PMID: 32532249 PMCID: PMC7291688 DOI: 10.1186/s12883-020-01820-2] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/11/2020] [Accepted: 06/03/2020] [Indexed: 01/20/2023] Open
Abstract
BACKGROUND Cerebral palsy (CP), which is the leading cause of motor disability during childhood, can produce sensory and cognitive impairments at different degrees. Most recent therapeutic interventions for these patients have solely focused on upper extremities (UE), although more than 60% of these patients present lower extremities (LE) deficits. Recently, a new therapeutic concept, Hand-arm Bimanual Intensive Therapy Including Lower Extremities (HABIT-ILE), has been proposed, involving the constant stimulation of UE and LE. Based on motor skill learning principles, HABIT-ILE is delivered in a day-camp setting, promoting voluntary movements for several hours per day during 10 consecutive week days. Interestingly, the effects of this intervention in a large scale of youngsters are yet to be observed. This is of interest due to the lack of knowledge on functional, neuroplastic and biomechanical changes in infants with bilateral CP. The aim of this randomized controlled study is to assess the effects of HABIT-ILE adapted for pre-school children with bilateral CP regarding functional, neuroplastic and biomechanical factors. METHODS This international, multicentric study will include 50 pre-school children with CP from 12 to 60 months of age, comparing the effect of 50 h (2 weeks) of HABIT-ILE versus regular motor activity and/or customary rehabilitation. HABIT-ILE presents structured activities and functional tasks with continuous increase in difficulty while the child evolves. Assessments will be performed at 3 period times: baseline, two weeks later and 3 months later. The primary outcome will be the Gross Motor Function Measure 66. Secondary outcomes will include Both Hands Assessment, Melbourne Assessment-2, Semmes-Weinstein Monofilament Test, algometry assessments, executive function tests, ACTIVLIM-CP questionnaire, Pediatric Evaluation of Disability Inventory (computer adaptative test), Young Children's Participation and Environment Measure, Measure of the Process of Care, Canadian Occupational Performance Measure, neuroimaging and kinematics. DISCUSSION The results of this study should highlight the impact of a motor, intensive, goal-directed therapy (HABIT-ILE) in pre-school children at a functional, neuroplastic and biomechanical level. In addition, this changes could demonstrated the impact of this intervention in the developmental curve of each child, improving functional ability, activity and participation in short-, mid- and long-term. NAME OF THE REGISTRY Evaluation of Functional, Neuroplastic and Biomechanical Changes Induced by an Intensive, Playful Early-morning Treatment Including Lower Limbs (EARLY-HABIT-ILE) in Preschool Children With Uni and Bilateral Cerebral Palsy (HABIT-ILE). TRIAL REGISTRATION NCT04017871 REGISTRATION DATE: July 12, 2019.
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Affiliation(s)
- Rodrigo Araneda
- Institute of Neuroscience, Université catholique de Louvain, Avenue Mounier 53 box B1.53.04, 1200 Brussels, Belgium
| | - Stephane V. Sizonenko
- Division of Child Development and Growth, Department of Pediatrics, University of Geneva, Geneva, Switzerland
| | - Christopher J. Newman
- Paediatric Neurology and Neurorehabilitation Unit, University Hospital of Lausanne, Lausanne, Switzerland
| | - Mickael Dinomais
- Département de Médecine Physique et de Réadaptions, CHU Angers-Capucins, Angers, France
- Laboratoire Angevin de Recherche en Ingénierie des Systèmes, Université d’Angers, Angers, France
| | - Gregoire Le Gal
- University Hospital of Brest, Brest, France
- INSERM CIC 1412, Brest, France
| | - Daniela Ebner-Karestinos
- Institute of Neuroscience, Université catholique de Louvain, Avenue Mounier 53 box B1.53.04, 1200 Brussels, Belgium
| | - Julie Paradis
- Department of Developmental Neuroscience, IRCCS Fondazione Stella Maris, Pisa, Italy
| | - Anne Klöcker
- Institute of Neuroscience, Université catholique de Louvain, Avenue Mounier 53 box B1.53.04, 1200 Brussels, Belgium
- Haute Ecole Léonard de Vinci, Parnasse-ISEI, Brussels, Belgium
| | - Geoffroy Saussez
- Institute of Neuroscience, Université catholique de Louvain, Avenue Mounier 53 box B1.53.04, 1200 Brussels, Belgium
| | - Josselin Demas
- Laboratoire Angevin de Recherche en Ingénierie des Systèmes, Université d’Angers, Angers, France
- Institut Régional de Formation aux Métiers de Rééducation et de Réadaptation (IFM3R), Nantes, France
| | - Rodolphe Bailly
- Pediatric rehabilitation department, Fondation Ildys, Brest, France
- INSERM UMR 1101, LaTIM, Brest, France
- Western Britany University, Brest, France
| | - Sandra Bouvier
- University Hospital of Brest, Brest, France
- INSERM UMR 1101, LaTIM, Brest, France
- Western Britany University, Brest, France
| | - Emmanuel Nowak
- University Hospital of Brest, Brest, France
- INSERM CIC 1412, Brest, France
| | - Andrea Guzzetta
- Department of Developmental Neuroscience, IRCCS Fondazione Stella Maris, Pisa, Italy
- Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
| | - Inmaculada Riquelme
- Department of Nursing and Physiotherapy and Research Institute on Health Sciences (UINICS-Idisba), University of the Balearic Islands, Palma de Mallorca, Spain
| | - Sylvain Brochard
- University Hospital of Brest, Brest, France
- Pediatric rehabilitation department, Fondation Ildys, Brest, France
- INSERM UMR 1101, LaTIM, Brest, France
- Western Britany University, Brest, France
| | - Yannick Bleyenheuft
- Institute of Neuroscience, Université catholique de Louvain, Avenue Mounier 53 box B1.53.04, 1200 Brussels, Belgium
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Epidemiology of Cerebral Palsy in Adulthood: A Systematic Review and Meta-analysis of the Most Frequently Studied Outcomes. Arch Phys Med Rehabil 2020; 101:1041-1052. [PMID: 32059945 DOI: 10.1016/j.apmr.2020.01.009] [Citation(s) in RCA: 45] [Impact Index Per Article: 9.0] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/15/2019] [Revised: 12/13/2019] [Accepted: 01/08/2020] [Indexed: 12/16/2022]
Abstract
OBJECTIVE To describe the epidemiology of health status, impairments, activities and participation in adults with cerebral palsy (CP). DATA SOURCES Embase, MEDLINE, Web of Science, PsycINFO, Cumulative Index to Nursing and Allied Health, Cochrane, and Google Scholar were searched for 3 themes ("cerebral palsy," "adult," and "outcome assessment") in literature published between January 2000 and December 2018. STUDY SELECTION Full-article peer-reviewed English journal articles on descriptive, observational, or experimental studies describing the most studied outcomes in adults with CP (n≥25, age≥18y) were included. Studies were included in the analyses if frequently studied outcomes were described in at least 3 studies using similar methods of assessment. DATA EXTRACTION Data were extracted independently by 2 authors from 65 articles (total N=28,429) using a standardized score sheet. DATA SYNTHESIS Meta-analyses revealed that overall, on average 65.1% (95% confidence interval [CI], 55.1-74.5) of adults with CP experienced pain, 57.9% (95% CI, 51.1-64.6) were ambulant, 65.5% (95% CI, 61.2-69.7) had little or no limitation in manual ability, 18.2% (95% CI, 10.6-27.2) had tertiary education, 39.2% (95% CI, 31.5;47.1) were employed, and 29.3% (95% CI, 9.0-55.3) lived independently. In adults without intellectual disability, proportions of individuals who were ambulant (72.6% [95% CI, 58.8-84.5]) and lived independently (90.0% [95% CI, 83.8-94.9]) were higher (P=.014 and P<.01, respectively). The Fatigue Severity Scale score was 4.1 (95% CI, 3.8-4.4). Epilepsy (28.8% [95% CI, 20.1-38.4]) and asthma (28.3% [95% CI, 18.7-38.9]) were especially prevalent comorbidities. CONCLUSIONS The present systematic review and meta-analysis on the epidemiology of adults with CP provided state-of-the-art knowledge on the most frequently studied outcomes. On average, adults with CP are fatigued, and a majority experience pain, are ambulant, and have little or no difficulty with manual ability. On average, 40% are employed and 30% live independently. More uniformity in assessment and reports is advised to improve knowledge on epidemiology and gain insight in more outcomes.
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Goldsmith S. Adults with cerebral palsy: findings from a population-based register. Dev Med Child Neurol 2019; 61:1122. [PMID: 30950510 DOI: 10.1111/dmcn.14238] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
Affiliation(s)
- Shona Goldsmith
- Cerebral Palsy Alliance Research Institute, Discipline of Child and Adolescent Health, The University of Sydney, Sydney, Australia
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Norte A, Alonso C, Martínez-Sanz JM, Gutierrez-Hervas A, Sospedra I. Nutritional Status and Cardiometabolic Risk Factors in Institutionalized Adults with Cerebral Palsy. ACTA ACUST UNITED AC 2019; 55:medicina55050157. [PMID: 31108986 PMCID: PMC6572289 DOI: 10.3390/medicina55050157] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/17/2019] [Revised: 05/02/2019] [Accepted: 05/15/2019] [Indexed: 01/10/2023]
Abstract
Background and Objectives: Cerebral palsy (CP) is a set of permanent disorders that limit physical activity and increase the risk of developing other diseases, such as metabolic syndrome (MS). Adequate nutrition can contribute to the prevention of associated symptoms. The main objective of this study is to evaluate the nutritional status and the prevalence of cardiometabolic risk factors in adults with CP and Gross Motor Function Classification System (GMFCS) levels between IV and V. Materials and Methods: A sample of 41 adults with CP and GMFCS levels from IV to V were studied. The variables used in the study were age, sex, weight, height, mean age, and GMFCS level range. To evaluate nutritional status, body mass index and the Mini Nutritional Assessment (MNA), a nutritional screening tool, were used. To assess cardiometabolic risk, data on obesity, central obesity, blood pressure, fasting plasma glucose, total cholesterol, high-density lipoprotein cholesterol, low-density lipoprotein cholesterol, and triglycerides were collected. Results: More than 80% of the population studied was malnourished or at risk of malnutrition, according to the MNA tool classification ranges, and around 35% of the studied population was within the underweight range. Regarding cardiometabolic risk factors, only one adult with CP was diagnosed with MS. Conclusions: The studied population of adults with CP and GMFCS levels between IV and V is not a population at risk of MS; however, the high prevalence of malnutrition, as well as some of the most prevalent cardiovascular risk factors, should be taken into consideration.
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Affiliation(s)
- Aurora Norte
- Nursing Department, Faculty of Health Science, University of Alicante, 03690 Alicante, Spain.
- Research Group on Food and Nutrition (ALINUT), University of Alicante, 03690 Alicante, Spain.
| | - Coral Alonso
- Nursing Department, Faculty of Health Science, University of Alicante, 03690 Alicante, Spain.
| | - José Miguel Martínez-Sanz
- Nursing Department, Faculty of Health Science, University of Alicante, 03690 Alicante, Spain.
- Research Group on Food and Nutrition (ALINUT), University of Alicante, 03690 Alicante, Spain.
| | - Ana Gutierrez-Hervas
- Nursing Department, Faculty of Health Science, University of Alicante, 03690 Alicante, Spain.
| | - Isabel Sospedra
- Nursing Department, Faculty of Health Science, University of Alicante, 03690 Alicante, Spain.
- Research Group on Food and Nutrition (ALINUT), University of Alicante, 03690 Alicante, Spain.
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