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Mahjoob M, Paul T, Carbone J, Bokadia H, Cardy RE, Kassam S, Anagnostou E, Andrade BF, Penner M, Kushki A. Predictors of Health-Related Quality of Life in Neurodivergent Children: A Systematic Review. Clin Child Fam Psychol Rev 2024; 27:91-129. [PMID: 38070100 PMCID: PMC10920445 DOI: 10.1007/s10567-023-00462-3] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 10/29/2023] [Indexed: 03/08/2024]
Abstract
Health-related Quality of Life (HRQoL) is a multi-faceted construct influenced by a myriad of environmental, demographic, and individual characteristics. Our understanding of these influencers remains highly limited in neurodevelopmental conditions. Existing research in this area is sparse, highly siloed by diagnosis labels, and focused on symptoms. This review synthesized the evidence in this area using a multi-dimensional model of HRQoL and trans-diagnostically across neurodevelopmental conditions. The systematic review, conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Checklist, was completed in June 2023 using Medline, PsycInfo, Embase, PubMed, and Cochrane Library. Our search revealed 78 studies that examined predictors of HRQoL in neurodevelopmental conditions. The majority of these studies focused on autism and ADHD with a paucity of literature in other conditions. Cross-diagnosis investigations were limited despite the fact that many of the examined predictors transcend diagnostic boundaries. Significant gaps were revealed in domains of biology/physiology, functioning, health perceptions, and environmental factors. Very preliminary evidence suggested potentially shared predictors of HRQoL across conditions including positive associations between HRQoL and adaptive functioning, male sex/gender, positive self-perception, physical activity, resources, and positive family context, and negative associations with diagnostic features and mental health symptoms. Studies of transdiagnostic predictors across neurodevelopmental conditions are critically needed to enable care models that address shared needs of neurodivergent individuals beyond diagnostic boundaries. Further understanding of HRQoL from the perspective of neurodivergent communities is a critical area of future work.
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Affiliation(s)
- Maryam Mahjoob
- University of Toronto, Toronto, ON, Canada
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Tithi Paul
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Julia Carbone
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Harshit Bokadia
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Robyn E Cardy
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Souraiya Kassam
- University of Toronto, Toronto, ON, Canada
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Evdokia Anagnostou
- University of Toronto, Toronto, ON, Canada
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Brendan F Andrade
- Margaret and Wallace McCain Centre for Child Youth and Family Mental Health, Centre for Addiction and Mental Health, Toronto, ON, Canada
- Department of Psychiatry, University of Toronto, Toronto, ON, Canada
| | - Melanie Penner
- University of Toronto, Toronto, ON, Canada
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada
| | - Azadeh Kushki
- University of Toronto, Toronto, ON, Canada.
- Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON, M4G 1R8, Canada.
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Kubota M, Haga N. Impact of the coronavirus pandemic on families of patients with congenital insensitivity to pain with anhidrosis. Pediatr Int 2023; 65:e15415. [PMID: 36371639 PMCID: PMC9877935 DOI: 10.1111/ped.15415] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/30/2022] [Revised: 10/11/2022] [Accepted: 11/07/2022] [Indexed: 11/14/2022]
Abstract
BACKGROUND Novel coronavirus disease (COVID-19) outbreaks have dramatically changed lifestyles, with various effects on the physical and mental health of families and children with various childhood-onset neurological diseases. A questionnaire survey was conducted to identify family-specific issues and needs of patients with congenital insensitivity to pain with anhidrosis (CIPA) during major changes in their daily lives due to the COVID-19 outbreaks. METHODS An anonymous questionnaire was sent to 56 families that were members of the Association of Patients and Families of CIPA in Japan between October and November 2020, the first 2 months of the third outbreak. RESULTS Thirty-eight families (67.2% response rate) responded to the questionnaire. The current concerns of the parents were (1) difficulty in predicting the future (19 parents, 50%), (2) household and work concerns (eight parents, 21.1%), and (3) whether they would become infected (25 parents, 65.8%). Fifteen families indicated stress due to increased time together (stress + group), and 10 families had a better understanding of each other due to increased time together. New sleep disturbances and behavioral changes were observed in approximately 20% and 50% of patients with CIPA, respectively. No single factor could explain family stress. There were also free descriptions of the importance of peer support, connections with experts, and prompt responses for resolution. CONCLUSIONS Each family has its own way of coping with multiple factors that contribute to the stress of the patient and family. A long-established resilience to the disease proved effective during this pandemic.
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Affiliation(s)
- Masaya Kubota
- Department of Pediatrics, Shimada Ryoiku Medical Center for Challenged Children, Tokyo, Japan.,Division of Neurology, National Center for Child Health and Development, Setagaya-ku, Japan
| | - Nobuhiko Haga
- Rehabilitation Services Bureau, National Rehabilitation Center for Persons with Disabilities, Tokorozawa, Japan
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Shobako N. Lessons from the health policies for children during the pandemic in Japan. Front Public Health 2022; 10:1015955. [PMID: 36339184 PMCID: PMC9628751 DOI: 10.3389/fpubh.2022.1015955] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/10/2022] [Accepted: 09/21/2022] [Indexed: 01/28/2023] Open
Abstract
It is everyone's desire to seek the sound growth of children through food education and there is a critical need for fostering an environment for this purpose. Health policies are important for this support. To the present, the Japanese society has been greatly disrupted by COVID-19 pandemic. "Stay at home", "mokusyoku (silent eating)", and mask wearing were encouraged in nationwide campaigns as public health measures to combat COVID-19. There are some papers reporting negative effects of "stay at home" and lockdowns such as weight gain, decrease in physical activities and change in eating habits. In Japan, while benefits and advantages of food education during mealtime were previously well studied, the "mokusyoku" rule may directly run counter to this food education. Moreover, there are several reports showing that nutrients might contribute to prevention of infectious diseases. Japanese children were also encouraged to wear masks all day long. The results of the clinical research, especially randomized control trials, show limited protective effect of masks. On the other hand, negative outcomes of the masks were reported in various scenes. This review focuses on these topics and arousing reconsideration for a better environment for children.
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Affiliation(s)
- Naohisa Shobako
- Division of Food Science and Biotechnology, Graduate School of Agriculture, Kyoto University, Uji, Japan
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