• Drug approval
• Patient reported outcomes
• Reporting quality
• Systemic rheumatic diseases

• Humans
• Patient Reported Outcome Measures
• United States
• Rheumatic Diseases/drug therapy
• United States Food and Drug Administration
• Drug Approval
• Antirheumatic Agents/therapeutic use
• Quality of Life

• 82302029 National Natural Science Foundation of China
• 24ZDYF0224 Sichuan Provincial Science and Technology Support Program

• clinical practice guidelines
• equity
• inclusion
• patient-reported outcome measures
• representation
• translation

• Humans
• Neural Tube Defects/surgery
• Adult
• Child
• Adolescent
• Child, Preschool
• Middle Aged
• Aged
• Treatment Outcome
• Young Adult
• Female
• Spine/surgery
• Male

• Humans
• Quality of Life
• Urinary Bladder, Neurogenic/surgery
• Urinary Bladder, Neurogenic/etiology
• Urinary Bladder, Neurogenic/psychology
• Spinal Cord Injuries/psychology
• Male
• Cross-Sectional Studies
• Female
• Adult
• Middle Aged
• Emotions
• Decision Making
• Plastic Surgery Procedures/methods
• Urinary Diversion/methods
• Patient Reported Outcome Measures

• Bilateral hip arthroplasty
• Complications
• Satisfaction rate
• Simultaneous
• Staged

• Humans
• Arthroplasty, Replacement, Hip/adverse effects
• Arthroplasty, Replacement, Hip/methods
• Patient Satisfaction
• Female
• Retrospective Studies
• Male
• Postoperative Complications/epidemiology
• Postoperative Complications/etiology
• Middle Aged
• Patient Readmission/statistics & numerical data
• Aged
• Anemia

• Department
• Healthcare
• Outcome
• Process
• Quality indicators
• Respiratory therapists
• Respiratory therapy
• Structure

• Minimal Documentation System
• advanced cancer
• outpatient
• palliative care
• patient-reported outcome measurement

• PROM
• chronic rhinosinusitis
• design
• patient‐reported outcome
• recall
• response
• scale

• Adult
• Aged
• Female
• Humans
• Male
• Middle Aged
• Young Adult
• Chronic Disease
• Cross-Sectional Studies
• Mental Recall
• Patient Reported Outcome Measures
• Rhinosinusitis/diagnosis
• Rhinosinusitis/therapy

• Adult spinal deformity
• Oswestry disability index
• Patient outcomes
• Spine surgery
• Thoracolumbar

• Adult
• Humans
• Treatment Outcome
• Quality of Life
• Retrospective Studies
• Surveys and Questionnaires
• Disability Evaluation

• Minimum data set
• National approach
• Patient outcomes
• Rare disease
• Registry

• Humans
• Rare Diseases/epidemiology
• Rare Diseases/therapy
• Quality of Life
• Australia/epidemiology
• Registries
• Data Collection/methods

• Rare Voices Australia

• Clinical registries
• Patient reported outcome measures
• Quality of life
• Response rates
• Surveys and questionnaires

• Humans
• Quality of Life
• Registries
• Patients
• Databases, Factual
• Patient Reported Outcome Measures

• Pelvic floor disorders
• Quality of care
• Quality of life
• Registry

• ePROMs
• nurse-reported
• symptom burden

• Humans
• Renal Dialysis
• Qualitative Research
• Peritoneal Dialysis
• Health Personnel
• Patient Reported Outcome Measures

• Netherlands Patients Federation

• Humans
• Male
• Female
• Adult
• Keratoconus/diagnosis
• Keratoconus/therapy
• Quality of Life
• Cross-Sectional Studies
• Prospective Studies
• Registries
• Patient Reported Outcome Measures
• Corneal Topography

• Knee
• Knee arthroplasty
• Patient-reported outcome measures
• Total knee replacement

• Pedi-IKDC
• Pediatric ACL
• Pediatric PROMs
• Recall-bias

• Colorectal cancer
• Diverticulitis
• Inflammatory bowel disease
• Patient-reported outcome measures
• Quality improvement
• Quality of life

(1) Background: The Pediatric Outcomes Data Collection Instrument (PODCI) is an English-language questionnaire specifically designed to assess health-related quality of life in children and adolescents with musculoskeletal disorders. This scoring system has been translated into several languages. Given the lack of an Italian version of the PODCI, this study aimed to translate, cross-culturally adapt, and assess the psychometric properties of the PODCI score in the Italian pediatric population. (2) Methods: The PODCI questionnaire was culturally adapted to Italian patients in accordance with the literature guidelines. The study included 59 participants from a single orthopedic institution who underwent orthopedic surgery for various skeletal conditions. The questionnaire was administered to participants at multiple time-points (T0, T1, T2). Internal consistency was evaluated using Cronbach’s alpha. Reproducibility was assessed using the intraclass correlation coefficient (ICC) between T0 and T1 assessment. Criterion validity was assessed using Spearman’s correlation coefficients between PODCI and the Hospital for Special Surgery Pediatric Functional Activity Brief Scale (HSS Pedi-FABS). Responsiveness was evaluated by the difference between T0 and T2 using the effect size (ES) and the standardized response mean (SRM) calculation. (3) Results: Cronbach’s alpha was acceptable in both the self- and parent-reported versions with values of 0.78 (0.68–0.90) and 0.84 (0.60–0.92), respectively. The ICC fluctuated between 0.31 and 0.89 for self-reported and 0.49 to 0.87 for pediatrics. The Spearman’s r showed a moderate correlation between HSS Pedi-FABS and the “Sport & Physical Functioning” and “Global Functioning” domains. ES and SRM varied from small to moderate across all the domains. (4) Conclusions: This study demonstrates that the Italian version of the PODCI, translated following the international standardized guidelines, is reliable, valid, and responsive in pediatric patients who underwent orthopedic surgery.

• Delphi
• Outcomes
• PROMs
• Quality of life
• Recommendations
• Registry

• Acceptability
• Quality of life
• Registry
• Stress urinary incontinence

• Australian Breast Device Registry
• Breast-Q Implant Surveillance
• breast augmentation
• breast device surgery
• patient reported outcome measures

• the Australian Department of Health

The Forgotten Joint Score is a patient-reported outcome measure validated in assessing patients post knee arthroplasty, anterior cruciate ligament (ACL) reconstruction surgery and patellar dislocation. A previous study had established the normative scores of a population in the USA but included knees with pathology. The aim of our study is to obtain normative Forgotten Joint Scores in young Asian adults without any pre-existing knee pathologies to increase the interpretability of the Forgotten Joint Score-12 (FJS-12) score.

We conducted a cross-sectional study across young healthy Asian adults via electronic platforms. Participants who had sought either Western medical consultation, physiotherapy or traditional medical therapies were excluded. Demographic data, occupation, type of sport played, and FJS-12 scores were collected. Scores were stratified into subgroups and analysed.

There were 172 participants who met our inclusion criteria for this study. The average age of participants in our study was 28.1 ± 10.5 years (range 14–70 years), with 83 (47.7%) participants falling into the ages 21–25 years. Average body mass index (BMI) was 21.9 ± 3.3 kg/m² (range 14.7–36.3 kg/m²). The average FJS-12 score was 62.8 ± 25.6. The median FJS-12 was 63.5 with a range of 4.2–100. Nine participants (5.2%) scored the maximum score possible, and 56 (32.6%) participants scored below the midpoint score of 50. The percentiles for each subgroup of participants were tabulated and reported. Notably, males aged 46–70 years old scored the highest average FJS-12 score of 73.4 ± 5.5, and females aged 31–45 years old scored the lowest FJS-12 score of 57.1 ± 25.1. Females scored lower than males, although the difference was not statistically significant (p = 0.157). There were no significant correlations between BMI, age, or type of sport played with FJS-12; however, interestingly, we observed that women reported similar FJS-12 scores across all age groups, while men reported better scores with increasing age.Interestingly, we observed that women reported similar FJS-12 scores across all age groups, while men reported better scores with increasing age. 

Having normative values provides opportunities for benchmarking and comparing individuals against age- and gender-matched peers in the general population. Knowledge of normative values for FJS-12 scores would aid evaluating and tracking progress in patients recovering from injuries or undergoing post-surgery rehabilitation. This would help clinicians  determine if they return to ‘normal’ post intervention.

The online version contains supplementary material available at 10.1186/s43019-021-00122-2.

• Forgotten Joint Score
• Knee
• Normative scores
• Patient-reported outcome scores
• Sports
• Young adults

• corneal diseases
• eye manifestations
• quality of life

• Adolescent
• Adult
• Comorbidity
• Corneal Topography
• Female
• Humans
• Keratoconus/diagnosis
• Keratoconus/epidemiology
• Male
• Middle Aged
• Outcome Assessment, Health Care
• Public Health Surveillance
• Quality of Life
• Severity of Illness Index
• Surveys and Questionnaires
• Symptom Assessment
• Visual Acuity
• Young Adult

• Fundação de Amparo à Pesquisa do Estado de São Paulo

The 12-item Short-Form Health Survey version 2 (SF-12v2), a widely used, generic patient-reported measure of health status that provides summary scores of physical and mental health. No study to date has examined the measurement properties of the SF-12v2 in patients with lung cancer using Rasch analysis. The aim of this study was to extend the psychometric evaluations of the SF-12 within the lung cancer population to ensure its validity and reliability to assess the health status in this population.

Participants in the Victorian Lung Cancer Registry (VLCR) who completed the SF-12v2 between 2012 and 2016 were included in this study. The structural validity of the SF-12v2 was assessed using Rasch analysis. Overall fit to the Rasch measurement model was examined as well as five key measurement properties: uni-dimensionality, response thresholds, internal consistency, measurement invariance and targeting.

A total of 342 participants completed the SF-12v2 three months following their lung cancer diagnosis. The SF-12 Physical Component Score (PCS-12) did not fit the overall Rasch measurement model (χ² 107.0; p < 0.001). Three items deviated significantly from the Rasch model (item fit residual beyond ± 2.5) with signs of dependency between item responses and disordered thresholds. Nevertheless, the PCS-12 was uni-dimensional with good internal consistency (person separation index [PSI] 0.83) and reasonable targeting. In contrast, the SF-12 Mental Component Score (MCS-12) had good overall model fit (χ² 35.1; p = 0.07), reasonable targeting and good internal consistency (PSI 0.81).

Rasch analysis suggests that there is general support for the reliability of the SF-12v2 as a measure of physical and mental health in people with lung cancer. However, the appropriateness of some items (e.g. pain) in the PCS-12 is questionable and further refinement of the scale including changing the response options may be required to improve the ability of the SF-12v2 to more appropriately assess the health status of this population.

The online version contains supplementary material available at 10.1186/s12955-021-01794-w.

• Health status
• Lung cancer
• Psychometrics
• Rasch analysis

• Artificial intelligence
• Computer vision
• Deep learning
• GDPR
• Learning algorithms
• Natural language processing
• biases
• curriculum development
• data protection
• machine learning
• narrow AI
• predictive analytics
• privacy
• risk prediction
• surgical education
• training
• transparency

• Artificial Intelligence
• Consensus
• Delphi Technique
• Humans
• Reproducibility of Results
• Robotic Surgical Procedures

• assisted reproduction
• embryo transfer
• natural cycle
• psychology
• randomised controlled trial

• Humans
• Pancreatic Neoplasms/psychology
• Pancreatic Neoplasms/therapy
• Patient Reported Outcome Measures
• Predictive Value of Tests
• Psychometrics
• Reproducibility of Results

• ATRS
• Achilles
• BMI
• FAOS
• Functional outcome
• Heel-rise test
• Patient-reported outcomes
• Smoking

Patient-centred and value-based health-care organisations are increasingly recognising the importance of the patient perspective in the measurement and evaluation of health outcomes. This has been primarily implemented using patient-reported outcome measures (PROMs). Clinical quality registries (CQRs) are specifically designed to improve direct clinical care, benchmark health-care provision and inform health service planning and policy. Despite CQRs having incorporated the patient perspective to support the evaluation of health-care provision, no evidence-based guidelines for inclusion of PROMs in CQRs exist. This has led to substantial heterogeneity in capturing and reporting PROMs within this setting. This publication is the first in a series describing the development of evidence-informed guidelines for PROMs inclusion within CQRs in Australia.

This study consisted of three components: 1) a literature review of existing evidence of guidelines, enablers, barriers, and lessons learnt of PROMs use within the CQRs setting; 2) a survey of Australian CQRs to determine current practices for PROMs use and reporting; and 3) development of a preliminary conceptual framework for PROMs inclusion in CQRs.

Content analysis of the literature review and survey of 66 Australian registries elicited eight categories for the conceptual framework. The framework covers eight components: rationale, setting, ethics, selection of PROMs, administration, data management, statistical methods, feedback, and reporting.

We developed a preliminary conceptual framework, which classified findings, from both the literature and the survey, into broad categories ranging from initial development to outcome dissemination providing the structure for development of guidelines in the next phase of this project, engaging national and international leaders in health-related quality of life research, clinicians, researchers, patient advocates and consumers.

• outcomes
• patient voice
• quality of life
• registry

• Aged
• Female
• Humans
• Male
• Middle Aged
• Patient Reported Outcome Measures
• Patient Satisfaction
• Percutaneous Coronary Intervention
• Psychometrics
• Reproducibility of Results
• Surveys and Questionnaires

• Medibank Better Health Foundation
• National Health and Medical Research Council

A patient’s ability to recall symptoms is poor in some elderly populations, but we considered that the recall of younger patients may be more accurate. The accuracy of recall in younger patients after surgery has not been reported to date.

To assess younger patients’ abilities to recall their preoperative symptoms after having undergone shoulder stabilization surgery. We used 2 disease-specific, patient-reported outcome measures (PROMs)—the Western Ontario Shoulder Instability Index (WOSI) and the Melbourne Instability Shoulder Score (MISS)—at a period of up to 2 years postoperatively.

Cohort study (diagnosis); Level of evidence, 2.

Participants (N = 119) were stratified into 2 groups: early recall (at 6-8 months postoperatively; n = 58) and late recall (at 9-24 months postoperatively; n = 61). All patients completed the PROMs with instructions to recall preoperative function. The mean and absolute differences between the preoperative scores and recalled scores for each PROM were compared using paired t tests. Correlations between the actual and recalled scores of the subsections for each PROM were calculated using an intraclass correlation coefficient (ICC). The number of individuals who recalled within the minimal detectable change (MDC) of each PROM was calculated.

Comparison between the means of the actual and recalled preoperative scores for both groups did not demonstrate significant differences (early recall differences, MISS 1.05 and WOSI –38.64; late recall differences, MISS –0.25 and WOSI –24.02). Evaluation of the absolute difference, however, revealed a significant difference between actual and recalled scores for both the late and early groups (early recall absolute differences, MISS 12.26 and WOSI 216.71; late recall absolute differences, MISS 12.84 and WOSI 290.08). Average absolute differences were above the MDC scores of both PROMs at both time points. Subsections of each PROM demonstrated weak to moderate correlations between actual and recalled scores (ICC range, 0.17-0.61). Total scores for the PROMs reached moderate agreement between actual and recalled scores.

Individual recall after shoulder instability surgery was not accurate. However, the mean recalled PROM scores of each group were not significantly different from the actual scores collected preoperatively, and recall did not deteriorate significantly over 2 years. This suggests that recall of the individual, even in this younger group, cannot be considered accurate for research purposes.

• Western Ontario Shoulder Instability Score
• patient recall
• patient-reported outcome measure
• shoulder instability
• surgery