Exploring How Youth Use TikTok for Mental Health Information in British Columbia: Semistructured Interview Study With Youth.

BACKGROUND: TikTok (ByteDance) experienced a surge in popularity during the COVID-19 pandemic as a way for people to interact with others, share experiences and thoughts related to the pandemic, and cope with ongoing mental health challenges. However, few studies have explored how youth use TikTok to learn about mental health. OBJECTIVE: This study aims to understand how youth used TikTok during the COVID-19 pandemic to learn about mental health and mental health support. METHODS: Semistructured interviews were conducted with 21 youths (aged 12-24 years) living in British Columbia, Canada, who had accessed TikTok for mental health information during the COVID-19 pandemic. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed using an inductive, data-driven approach. RESULTS: A total of 3 overarching themes were identified describing youth's experiences. The first theme centered on how TikTok gave youth easy access to mental health information and support, which was particularly helpful during the COVID-19 pandemic to curb the effects of social isolation and the additional challenges of accessing mental health services. The second theme described how the platform provided youth with connection, as it gave youth a safe space to talk about mental health and allowed them to feel seen by others going through similar experiences. This helped normalize and destigmatize conversations about mental health and brought awareness to various mental health conditions. Finally, the last theme focused on how this information led to action, such as trying different coping strategies, discussing mental health with peers and family, accessing mental health services, and advocating for themselves during medical appointments. Across the 3 themes, youth expressed having to be mindful of bias and misinformation, highlighting the barriers to identifying and reporting misinformation and providing individualized advice on the platform. CONCLUSIONS: Findings suggest that TikTok can be a useful tool to increase mental health awareness, reduce stigma, and encourage youth to learn and address their mental health challenges while providing a source of peer connection and support. Simultaneously, TikTok can adversely impact mental health through repetitive exposure to mentally distressing content and misleading diagnosis and treatment information. Regulations against harmful content are needed to mitigate these risks and make TikTok safer for youth. Efforts should also be made to increase media and health literacy among youth so that they can better assess the information they consume online.

Health through the eyes of youths: a qualitative study.

Background: Emerging definitions of health have suggested a shift in focus to one's ability to manage their health condition, function, and social determinants of health. The construct of health for youths with mental health and substance use disorders (MHSU) is complex and multi-dimensional with interplay between biological, behavioral, and social conditions. Expanding definitions of health is crucial in the measurement of health and evaluation of integrated youth services (IYS) systems for people with MHSU disorders. Hence, it is critical to understand the construct of health from the perspective of a young person living with a MHSU disorder. Methods: This study was conducted using inductive thematic analysis. Three focus groups were conducted from July to August 2017. Results: A total of 22 youths (17-24 years) took part in this study. Results showed that health is a multidimensional construct situated in the ecosystem of a person's environment. Health can be understood from two macro themes: Individual health and Determinants of health. It consisted of physical health, mental health, day-to-day functioning, and being in control of your own health condition. Systemic and social factors were factors that influenced the state of health. Conclusion: This study contributes to a conceptualization of good health in youth with MHSU disorders. This conceptualization can aid in the development of more accurate measures of health and functioning and the evaluation of mental health services for youth with MHSU.

Implementing Foundry: A cohort study describing the regional and virtual expansion of a youth integrated service in British Columbia, Canada.

AIM: Integrated youth services (IYS) have been identified as a national priority in response to the youth mental health and substance use (MHSU) crisis in Canada. In British Columbia (BC), an IYS initiative called Foundry expanded to 11 physical centres and launched a virtual service. The aim of the study was to describe the demographics of Foundry clients and patterns of service utilization during this expansion, along with the impact of the COVID-19 pandemic. METHODS: Data were analysed for all youth (ages 12-24) accessing both in-person (April 27th, 2018-March 31st, 2021) and virtual (May 1st, 2020-March 31st, 2021) services. Cohorts containing all clients from before (April 27th, 2018-March 16th, 2020) and during (March 17th, 2020-March 31st, 2021) the COVID-19 pandemic were also examined. RESULTS: A total of 23 749 unique youth accessed Foundry during the study period, with 110 145 services provided. Mean client age was 19.54 years (SD = 3.45) and 62% identified as female. Over 60% of youth scored 'high' or 'very high' for distress and 29% had a self-rated mental health of 'poor', with similar percentages seen for all services and virtual services. These ratings stayed consistent before and during the COVID-19 pandemic. CONCLUSIONS: Foundry has continued to reach the target age group, with a 65% increase in number of clients during the study period compared with the pilot stage. This study highlights lessons learned and next steps to promote youth-centred data capture practices over time within an integrated youth services context.

Patterns of service utilization among youth with substance use service need: a cohort study.

BACKGROUND: Integrated youth services (IYS) are vital to addressing the needs of youth who use substances. Evidence on the characteristics of youths accessing these services and the types of services accessed have been limited. The objectives were to identify sociodemographic, self-reported health and mental health, patterns of service utilization (service type and frequency of visits) among youths with different levels of substance use service needs (low, moderate, and high), and to estimate the extent to which substance use service needs, self-reported health and mental health influenced the frequency of visits and types of service utilized. METHODS: Data were collected from youth (12-24 years) accessing IYS centres in Canada. Information on socio-demographic factors, substance use in the last month, self-rated health measures, number of service visits, and type of services utilized were included. Poisson regression was used to estimate the relationship between substance use needs and number of service visits and the different type of services utilized. RESULTS: Of 6181 youths, 48.0% were categorized as low substance use service needs, 30.6% had moderate needs and 21.4% had high needs, with higher proportion of men in the high needs group. Mental health and substance use (MHSU) services were utilized the most across all three groups, followed by counseling. The median number of visits was 4 for the low and moderate needs group and 5 in the high needs group. People with high service needs had 10% higher rate of service visits and utilized 10% more services than people with low service needs (service visits: RR = 1.1 (95%CI: 1.1-1.2); service type: RR = 1.1 (95%CI:1.0-1.1)). The rate of service visits increased by 30 to 50% and the number of services increased by 10-20% for people who rated their health good/fair/poor. Similarly, the rate of service visits increased by 40 to 60% and the number of services increased by 20% for people who rated their mental health good/fair/poor. CONCLUSIONS AND IMPACTS: Our study highlighted that regardless of service needs, youth who use alcohol and drugs have complex intersecting needs that present once they access integrated youth services.

Admission and discharge profiles of people with MS accessing in-patient rehabilitation in Canada.

BACKGROUND: Rehabilitation is the mainstay of management for people with disabilities of neurological origin to maximize function and reduce disability. Access to in-patient rehabilitation is usually reserved for people after crises or those who are discharged from acute care such as in stroke or trauma. Access to people with Multiple Sclerosis (MS) differs across countries and unknown for Canada. With the progression of MS, quality of life (QOL) becomes more closely coupled with independence and hence timely access to rehabilitation is important. The objectives of this paper are (i) to characterize the disability profiles of people with MS admitted to in-patient rehabilitation in Canada; and (ii) to estimate the extent to which disability profiles differ from admission to discharge. METHODS: A longitudinal study of a rehabilitation admission-to-discharge cohort of 3500 people with MS was conducting using latent class analysis on the five Functional Independence Measure (FIM) subscales for Self-care, Transfers, Locomotion, Bladder/Bowel, and Cognition. The extent to which age, sex, and calendar time was associated with latent class membership, at both admission and discharge, was estimated using ordinal logistic regression, and proportional odds model was calculated for each age and sex. RESULTS: At admission five classes were identified. The two most prevalent classes included people with total or moderate dependency in all FIM subscales except cognition (n = 1205 and n = 1099). The third most common was dependent in ambulation only (n = 523), followed by dependence in ambulation with varying degree of limitation in self-care and transfers (n = 465, and n = 208). At discharge four classes were identified with the largest class comprising of people dependent in ambulation and to a lesser degree in transfers (n = 1010). The second most prevalent class was no dependency (n = 946), followed by two classes with varying dependency in all subscales but cognition (n = 678 and n = 771). CONCLUSION: Overall 62.3% of admissions transitioned to a more functional class by discharge. By discharge 28% of the population was characterized by no dependencies; however, 23% remained with dependencies in all areas. Those in the most dependent classes showed the greatest probability of transitioning to a better class at discharge highlighting the importance of reserving scarce rehabilitation services to those with more disability.

Patient experience or patient satisfaction? A systematic review of child- and family-reported experience measures in pediatric surgery.

PURPOSE: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly recognized as important health care quality indicators. PREMs measure patients' perception of the care they have received, differing from satisfaction ratings, which measure their expectations. The use of PREMs in pediatric surgery is limited, prompting this systematic review to assess their characteristics and identify areas for improvement. METHODS: A search was conducted in eight databases from inception until January 12, 2022, to identify PREMs used with pediatric surgical patients, with no language restrictions. We focused on studies of patient experience but also included studies that assessed satisfaction and sampled experience domains. The quality of the included studies was appraised using the Mixed Methods Appraisal Tool. RESULTS: Following title and abstract screening of 2633 studies, 51 were included for full-text review, of which 22 were subsequently excluded because they measured only patient satisfaction rather than experience, and 14 were excluded for a range of other reasons. Out of the 15 included studies, questionnaires used in 12 studies were proxy-reported by parents and in 3 by both parents and children; none focused only on the child. Most instruments were developed in-house for each specific study, without patients' involvement in the process, and were not validated. CONCLUSIONS: Although PROMs are increasingly used in pediatric surgery, PREMs are not yet in use, being typically substituted by satisfaction surveys. Significant efforts are needed to develop and implement PREMs in pediatric surgical care, in order to effectively capture children's and families' voices. LEVEL OF EVIDENCE: IV.

Impact of the COVID-19 pandemic on alcohol or drug use symptoms and service need among youth: a cross-sectional sample from British Columbia, Canada.

BACKGROUND: Concerns about youth alcohol and drug use have risen since the declaration of the global COVID-19 pandemic due to the pandemic's impact on known risk and protective factors for substance use. However, the pandemic's immediate and long-term impact on youths' substance use patterns has been less clear. Thus, this study sought to determine how the COVID-19 pandemic impacted alcohol or drug use and its risk and protective factors among youth accessing integrated youth services. METHODS: We conducted a repeated cross-sectional study of patient-reported outcomes data collected between May 2018 and February 2022 among youth (n = 6022) ages 10-24 accessing a provincial network of integrated youth services in Canada. The main exposure of interest was the COVID-19 pandemic (March 2020 - February 2022) compared with a pre-pandemic period (May 2018 - February 2020). As measured by the Global Appraisal of Individual Needs - Short Screener, outcomes included the average number of past month alcohol or drug use symptoms and past month likelihood of service need for alcohol/drug use (moderate/high vs. low need). Interrupted time series (ITS) examined change in average monthly alcohol/drug use symptoms between the pre- and pandemic periods. Stratified multivariable logistic regression investigated how the pandemic modified the effects of established risk/protective factors on likelihood of alcohol/drug use service need. RESULTS: Fifty-percent of youth met the criteria for moderate/high likelihood of alcohol/drug use service need, with the odds being 2.39 times (95% confidence interval = 2.04, 2.80) greater during the pandemic compared to the pre-pandemic period. Results from the ITS indicated significant immediate effects of the pandemic on monthly substance use symptoms (p = 0.01). Significant risk/protective factors for service need included exposure to violence, engagement in meaningful activities, and self-rated physical and mental health; and the direction of their effects remained consistent across pandemic and pre-pandemic periods. CONCLUSIONS: This study demonstrated that the COVID-19 pandemic corresponded with increased alcohol or drug use among youth accessing integrated services. This signals an urgent need for increased clinical capacity in existing youth services and policies that can respond to risk/protective factors for substance use earlier.

YESS: A feasibility study of a supported employment program for youths with mental health disorders.

Objective: In Canada, employment/education support is rarely embedded as a component of mental health service delivery. This study describes a supported education/employment program (SEP) that integrates both clinical and community mental health services. The main objectives were to estimate the feasibility of a 5-week SEP among youths aged 17-24 with mental illness and to estimate the extent to which participation in this program improved employment and mental health outcomes. Methods: This was a single cohort study. Feasibility outcomes assessed were demand, acceptability, practicality, integration, adaptation, and effectiveness. These were assessed through recruitment and retention rates, recording patterns of missing data, and examining differences between completers and non-completers. Appropriateness of the outcome measures was assessed through the strength of the association between the outcome measures at baseline. Effectiveness of the program was assessed through employment and as measured using MyLifetracker (MLT), Satisfaction with Life Scale (SWLS), and the Canadian Personal Recovery Outcome Measure (CPROM). Results: A total of 110 youths with a mean age of 20.6 (SD: 2.2) were recruited. At 5 weeks, 82 (74.5%) of participants remained in the program. Of the people who completed the program, 56.1% were women, 76.6% were in stable housing and 64.1% had depression. Approximately 60% of non-completers used two or more services and were in at-risk housing. More than 25% of participants improved on the patient-reported outcomes. Scores on these measures were moderately to highly correlated with each other. Employment rates varied and corresponded to the waves of the COVID-19 pandemic in Canada. Conclusion: Results showed that this program was feasible and there was high demand for SEP during the COVID-19 pandemic but gaining employment remained difficult. Educational or employment outcomes, measured over a short period, may not be adequate. Instead, individualized and patient-reported outcome measures may be more appropriate for SEP programs.

"It cannot be boring!": Developing a measure of function for young adults accessing integrated youth services.

BACKGROUND: In Canada, the prevalence of mental health challenges is highest in young people aged 12-24. Mental health challenges frequently cause marked functional impairment. Despite this, we are unaware of any existing conceptualization and/or measures of function that has been developed from the perspective of young people. The objective of this paper is to develop a conceptual and measurement model, including a preliminary set of items, for an outcome measure of function for young adults accessing mental health services. METHODS: We conducted this study in three phases. In phase 1, we conducted three focus groups to conceptualize function as a construct from the perspective of young adults. In phase 2, we co-designed a set of items with youth (n = 4) to capture the construct. In phase 3, we invited young people (n = 12) accessing mental health services to complete workbooks and participate in one of two focus groups to evaluate whether items were clear, captured function comprehensively, and were relevant. We transcribed and compiled all data to eliminate, refine and generate new items. RESULTS: In phase 1, a conceptual model of function was developed with three main themes: basic needs, roles and responsibilities, and social connections. In phase 2, 97 candidate items were developed, and in phase 3, a candidate pool of 50 items resulted for psychometric testing. CONCLUSION: This youth-centred conceptualization of function and preliminary item bank has the potential to advance person-centred care, outcomes, and experiences for youth seeking mental health services.

Quality of life in pediatric-onset multiple sclerosis: Different disease course, different impact, different measurement approach needed.

OBJECTIVE: To understand the impact of pediatric multiple sclerosis (MS), health-related quality of life (HRQL) measures have been used. However, specific areas of concern of youths with MS are not known. The objective of this study was to contribute content for inclusion in a new condition-specific measure of the life impact of MS for children and adolescents. METHODS: A patient engagement framework was used, and an online survey was developed using the Patient Generated Index (PGI). Text threads generated by the PGI were mapped to the International Classification of Functioning, Disability, and Health (ICF) and the Comprehensive ICF Core Set for MS. RESULTS: A total of 20 people completed the PGI survey of which 11 were youths with MS aged 14 to 22 years. Over 75% of the areas nominated by youths with MS were related to activities and participation and approximately 20% were related to body function. In contrast, 60% of the areas nominated by parents were related to body function. This finding indicated that a measure of life impact would need to include both impairments associated with MS and important activities and roles. This new approach has a disability component covers MS-related impairments and is completed using the PGI system where the youth select disability areas affected by MS, rate, and prioritize each area for improvement. The "quality of life" component queries those areas that are going well. CONCLUSION: This new measurement approach could prove useful in overcoming challenges in developing condition-specific measures for rare conditions.

"I Felt Supported by the Peers in My Group": Analyzing Experiences of Youths with Mental Health Challenges of a Supported Employment Program in Canada.

PURPOSE: The objectives of this study were to gain an understanding of the experiences of youths with mental health conditions who have undergone a 16-week supported employment program (SEP) conducted in an urban centre in Canada. METHODS: Focus groups and individual semi-structured interviews were used to capture the experience of youths who had completed the program. Youths were eligible if they were aged 19 to 30 years diagnosed with a mental illness and enrolled in the program. Purposeful sampling was used to recruit participants. Thematic analysis was conducted to analyze the data. Primary codes were organized and mapped onto Donebedian's Structure-Process-Outcome Model. RESULTS: Altogether, 34 participants, aged 17 to 30 years old, described their experiences participating in this 16-week supported employment program. Participants' experiences of this program and with employment were categorized into four main themes focusing on the (1) structure of program, (2) process of care (3) outcomes of program, and (4) improvements to the program. CONCLUSION: Overall, the experience of a supported employment program was perceived as valuable, with unexpected benefits of the program beyond employment including the establishment of routine, friendship, and self-confidence. The proposed model can be used as a structure for monitoring and evaluating SEP.

Reducing research wastage by starting off on the right foot: optimally framing the research question.

PURPOSE: Strongly framed research questions are clear as to the population (P), the exposures or interventions (E/I), comparison groups (C), outcomes (O), time when relevant (T), and what the investigator wants to know. A solid framework sets up the measurement model, analysis, and anticipated results. The purpose of this study was to estimate the extent to which research questions in journals that focused on patient-reported outcome measures (PROM) and quality of life (QOL) are clear. METHODS: All 440 research articles published in four PROM journals in 2020. excluding reviews, psychometric, and qualitative papers, were reviewed. Research questions were classified as: (i) adequately framed (ii) poorly framed; or (iii) unframed based on clarity criteria. Examples from each journal were presented and reframed to match results in the article. RESULTS: Of 440 articles, 195 (44.3%) were classified as adequately framed; 230 (52.2%) as poorly framed; and 15 (3.4%) as unframed. There was heterogeneity across journals (Chi-square: 20.8; 6 df; p = 0.002). Only 29% were framed according to what the investigators wanted to know; 72% were framed like a "to do" list; and 6% were framed as a research agenda. CONCLUSION: Almost half of the questions were poorly framed or unframed a practice that could contribute to research wastage. Even "adequately framed" questions rarely stated what they wanted to know a priori, increasing the risk of biased reporting. Researchers, reviewers, and editors should encourage the use established frameworks for research questions.

Patient-reported outcome measures in pediatric surgery - A systematic review.

PURPOSE: With improved long-term survival rates, measuring the quality of surgical care has gradually shifted from clinical morbidity and mortality to patient-reported outcome measures (PROMs). Since the use of PROMs in pediatric surgery is still limited, we undertook a study to identify current PROMs, assess their characteristics, and identify gaps and areas for improvement. METHODS: A search was conducted in eight databases from their inception until May 2021 to identify PROMs that have been used in pediatric surgical patients. PRISMA standards were followed, and screening was completed by two independent reviewers. The quality of the included studies was appraised using the AXIS and the Mixed Methods Appraisal Tool. RESULTS: Of 8282 studies screened, 101 articles met the inclusion criteria. Most of the studies (99%) were cross-sectional. We identified 85 different PROMs among the studies, 53 being disease-specific and the rest generic. The PedsQL™ was the most frequently used tool (42 studies). Almost half of the instruments (41 studies) were not validated, and 28% were developed ad hoc for each specific study. Significantly, all PROMs encountered were standardized (consisting of pre-determined domains), with no individualized tools currently in use. The overall quality of the included studies was good. CONCLUSIONS: PROMs are increasingly used in pediatric surgery. Disease-specific PROMs predominate the field, yet validated and especially individualized PROMs are notably absent. Future efforts are needed to develop robust tools that reflect individual patient and family needs, preferences, and values, with the aim of furthering family-centered pediatric surgical care.

Age differences in trajectories of self-rated health of young people with Multiple Sclerosis.

BACKGROUND: Recent evidence has suggested an existence of a multiple sclerosis (MS) prodrome. Hence, some young adults with MS are very likely to have had symptoms in childhood or adolescence. It is, therefore, reasonable to assume that people aged under 25 years with MS might have had pediatric-onset. In contrast, young people aged between 26 and 35 are less likely to have had pediatric-onset. Contrasting these two groups of people could lead to valuable information about the impact of MS over time. The purpose of this study is to characterize how self-rated health (SRH) in young people with MS changed over time and to estimate the extent to which SRH differs between age groups (18 to 25 years and 26 to 35 years) and sex. METHODS: This study utilized placebo arm data from the Multiple Sclerosis Outcome Assessment Consortium database. Responses to the RAND-36 SRH item of 393 participants were included. Group-based trajectory models (GBTM) were used to identify patterns of change over two years. Ordinal regression was performed to estimate whether these trajectory groups differed by age group, sex, and relapse event. RESULTS: Results of GBTM showed that all groups were stable over time except one progressing from a rating of "very good" to "excellent". Posterior probabilities showed that 35% of people consistently rated their health "very good or excellent" and 2% consistently rated their health as "poor". Health perceptions differed across age groups (ß = 0.5, OR: 1.7 CI: 1.1, 2.6) but not sex (ß = -0.1, OR: 0.9 CI: 0.6 1.3). Compared to the younger group, people aged 26 to 35 years are 1.7 times more likely to rate their health poorer. People with relapses are also 2.2 times more likely to rate their health poorer (ß = 0.8, OR: 2.2 CI: 1.5, 3.2). CONCLUSION: Trajectories of SRH of young people with MS were relatively stable. In the absence of drug treatment, people in the younger group (<25 years) rated their health better than those in a slightly older group which is consistent with lower disability.

Longitudinal analysis of disability outcomes among young people with MS.

BACKGROUND: The age of onset of MS appears to influence the course of disease progression and people with younger age of onset might have a different disability trajectory. OBJECTIVES: To identify longitudinal patterns of disability progression, as measured by changes in the Multiple Sclerosis Functional Composite (MSFC), of young people in MS drug trials and to estimate the extent to which disability progression differ in two age groups (≤25 years and 26 - 35 years). METHODS: Data from the Multiple Sclerosis Outcomes Assessment Consortium (MSOAC) was used. Longitudinal patterns on the MSFC were identified using group-based trajectory models (GBTM). For difference between the expected and observed proportions of people with pediatric-onset MS chi-square statistic was used. Linear mixed models were used to estimate the average change in performance over time, age and sex. RESULTS: GBTM results showed little variability in performance over time. Mixed modeling showed that the younger group performed better for gait speed, dexterity, and cognition. Men performed poorer on dexterity and cognition. Distribution of people with pediatric-onset MS differed from expected on dexterity, cognition, and the EDSS. CONCLUSIONS: The combined use of trajectory models and linear mixed models provided rich information about the variability in function over time.

Response shift in patient-reported outcomes: definition, theory, and a revised model.

PURPOSE: The extant response shift definitions and theoretical response shift models, while helpful, also introduce predicaments and theoretical debates continue. To address these predicaments and stimulate empirical research, we propose a more specific formal definition of response shift and a revised theoretical model. METHODS: This work is an international collaborative effort and involved a critical assessment of the literature. RESULTS: Three main predicaments were identified. First, the formal definitions of response shift need further specification and clarification. Second, previous models were focused on explaining change in the construct intended to be measured rather than explaining the construct at multiple time points and neglected the importance of using at least two time points to investigate response shift. Third, extant models do not explicitly distinguish the measure from the construct. Here we define response shift as an effect occurring whenever observed change (e.g., change in patient-reported outcome measures (PROM) scores) is not fully explained by target change (i.e., change in the construct intended to be measured). The revised model distinguishes the measure (e.g., PROM) from the underlying target construct (e.g., quality of life) at two time points. The major plausible paths are delineated, and the underlying assumptions of this model are explicated. CONCLUSION: It is our hope that this refined definition and model are useful in the further development of response shift theory. The model with its explicit list of assumptions and hypothesized relationships lends itself for critical, empirical examination. Future studies are needed to empirically test the assumptions and hypothesized relationships.

Quality of life measures in pediatric multiple sclerosis: a systematic review and meta-analysis.

AIM: To identify generic measures used to measure quality of life (QoL) in pediatric multiple sclerosis research, estimate an overall score of children and adolescents with pediatric multiple sclerosis, and compare the scores to scores of typically developing children and adolescents. METHOD: A systematic search was conducted on four databases. All studies were included if: the sample was children with pediatric demyelinating disorders; self-reported QoL/health-related quality of life (HRQoL) measures or results were reported; and the mean age of the sample was below 21 years. Quality of the included articles was appraised using the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist and the Mixed Methods Appraisal Tool checklist. A meta-analysis was also conducted. RESULTS: A total of 12 full-text articles were included. Content analysis showed that many components of QoL were not included in the measures. Seven studies were included in the meta-analysis. The meta-analyzed score was 75.7 (95% confidence interval 71.2-80.3) with a pooled standard deviation of 16.6. Scores of typically developing children and children with pediatric multiple sclerosis were similar. INTERPRETATION: Most measures assessed HRQoL and not QoL. Development of a condition-specific measure of QoL for children and adolescents with pediatric multiple sclerosis would make an important contribution to the field. What this paper adds Health-related quality of life (HRQoL) measures were used to measure quality of life in pediatric multiple sclerosis. HRQoL scores in pediatric multiple sclerosis were similar to typically developing children and adolescents.

What is QOL in children and adolescents with physical disabilities? A thematic synthesis of pediatric QOL literature.

PURPOSE: Many neuromotor conditions affect children from a young age through to adulthood, impacting their quality of life (QOL). For QOL to be accurately measured in these children, pediatric QOL must first be conceptualized. Some theoretical models and definitions have been proposed to understand QOL, but they were not developed for the pediatric population. The purpose of this review is to build on existing frameworks of QOL and develop a framework and definition of pediatric QOL for measurement purposes, by integrating the findings of multiple qualitative studies involving children and adolescents with physical disabilities. METHODS: A systematic search was conducted on four databases. Inclusion criteria were qualitative studies with participants with common neurological and neuromuscular conditions. The content of studies had to involve the lived experiences of children and adolescents with disabilities. Thematic synthesis was conducted. RESULTS: 48 studies were included. Results generated a schema of the causes and the mitigators of QOL. This  consisted of casual indicators of QOL, mitigators, and components of QOL. Themes under QOL included thoughts and feelings, fitting in, self-image, about the future, and independence. A new framework and definition of pediatric QOL were proposed. CONCLUSIONS: In conclusion, pediatric QOL for children with disabilities is formed by their thoughts and feelings, being accepted by society, being able to forge an identity that is beyond their disability, having autonomy, and having a hope for the future. The resulting QOL framework proposed here can also aid future development of QOL measures in children with physical disabilities.