Facilitators and barriers to patient-centred goal-setting in rehabilitation: A scoping review.

OBJECTIVE: Identify, map, and synthesize existing reviews, to extract and analyse the most prominent barriers and facilitators to applying patient-centred goal-setting practice in rehabilitation using the Capability, Opportunity Motivation Behaviour (COM-B) model. DESIGN: Scoping review. DATA SOURCE: A primary search was conducted in MEDLINE, CINAHL, EMBASE, PsychInfo, and Cochrane. Citation chaining was employed. REVIEW METHODS: All types of review (systematic, scoping, and narrative) studies published up to June 14, 2022 that included physical and neurological rehabilitation, patient-centeredness, and goal-setting were reviewed. Studies were scrutinized for relevance, quality was not assessed. The most prominent barriers and facilitators were synthesized using thematic content analysis and mapped onto the COM-B model. RESULTS: Twenty-six review studies covering a range of conditions and settings, acute to community were included. Barrier and facilitators were identified at patient, provider, and organizational level. Barrier themes include provider's existing beliefs about goal-setting, lack of skills, and integration into clinical routines. Patient barriers related to capacity and opportunity to participate. Organizational barriers include lack of clinical guidelines, patient preparation, insufficient provider time, and high productivity expectations. Facilitators included goal-setting guidelines, training and education of providers and patients, revised clinical routines, performance monitoring, adequate time, and resources. CONCLUSION: Healthcare providers should be the primary target of intervention. A provider's motivation to change current practice is the most prominent barrier, followed closely by capacity and opportunity. Patients require information, training, and structured engagement opportunities. Organizations play a key role in creating the optimal environmental conditions to enable patient-centred goal-setting.

Quality of life (QOL) narratives of growing up with epilepsy from youth and family perspectives.

PURPOSE: Qualitative research studies deepen our understanding of growing up with epilepsy but are limited to the singular perspective of children or their parents at one point in childhood. A more complete view requires multiple perspectives and narrative accounts that represent development from early childhood to young adulthood. Thematic study of life narratives of 7 young people and at least one person within their families were interviewed separately (15 participants) for two interviews each (30 interviews). The objective was to obtain narratives of the life experiences, the attributions of those experiences, and crucial periods relating to quality of life (QOL) with no apriori assumptions that their lives were shaped by epilepsy. Themes were formed inductively from subthemes and codes were created based on the constant comparative method by two interviewers who iteratively co-coded the data. RESULTS: Themes emerging from the data: "Story of My Health," "Growing by Doing," "To Adapt or Not to Adapt," "Supports and Challenges," "Parent World," and "Looking in and Out, Forward and Back", often included components of seizure and epilepsy experiences but also mirrored life challenges of growing up in general. The only exclusively epilepsy-specific theme: "To Adapt or Not to Adapt", was about the challenges and solutions for dealing with the uncertainty caused by seizures and potential isolation that results from others' reactions. CONCLUSIONS: There were a range of experiences related to QOL described by participants growing up with epilepsy. The 'ingredients' of a good life (e.g., social and self-acceptance) were consistent with QOL research for general populations, although these were often expressed as more difficult to attain when growing up with epilepsy.

Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.

PURPOSE: To assess child and family engagement in the selection of patient-reported outcomes for clinical studies/clinical settings and development of patient-reported outcome measures (PROMs)/patient-reported experience measures (PREMs) across the pediatric literature. METHODS: Databases were reviewed: EMBASE, MEDLINE, and PsycINFO. Articles published from December 2009 to September 2018 pertaining to the selection of outcomes or development of PROMs/PREMs for children or families were included. The International Association for Public Participation (IAP2) Spectrum of Public Participation was used to classify levels of engagement across each article; IAP2 plots engagement on a spectrum across five stages (from minimal to most engagement): Inform, Consult, Involve, Collaborate, and Empower. RESULTS: 9019 non-duplicate articles were screened; 36 articles met inclusion criteria, seven studies focused on the selection of outcomes, and 29 studies pertained to PROM/PREM development. Twenty-three articles adhered to 'Involve' level of engagement. Four articles were categorized as 'Collaborate,' seven articles were classified as 'Consult,' and three articles were categorized as 'Inform'. CONCLUSION: Children and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research.

Caregiver dissatisfaction with their child's participation in home activities after pediatric critical illness.

BACKGROUND: Pediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children's participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers' report dissatisfaction and to determine predictors of caregivers' dissatisfaction with their child's participation in home activities post-PICU discharge. METHODS: Secondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N = 170) of children 1-17 years, admitted to a PICU ≥48 h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6 months post-PICU discharge. Caregivers reported on their dissatisfaction with their child's participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ≥50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models. RESULTS: There was variability in reported dissatisfaction across all activities; ≥50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children < 5 years), homework, indoor play and games, and computer/video games (children ≥5 years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction. CONCLUSIONS: Individualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family's transition home post-PICU. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT02148081 05/28/2014.

Implementing participation-focused services: A study to develop the Method for using Audit and Feedback in Participation Implementation (MAPi).

BACKGROUND: It is widely agreed that children's services should use participation-focused practice, but that implementation is challenging. This paper describes a method for using audit and feedback, an evidence-based knowledge translation strategy, to support implementation of participation-focused practice in front-line services, to identify barriers to implementation, and to enable international benchmarking of implementation and barriers. METHOD: Best-practice guidelines for using audit and feedback were followed. For audit, participation-focused practice was specified as clinicians' three observable behaviours: (a) targets participation outcomes; (b) involves child/parent in setting participation outcomes; and (c) measures progress towards participation outcomes. For barrier identification, the Theoretical Domains Framework Questionnaire (TDFQ) of known implementation barriers was used. A cycle of audit and barrier identification was piloted in three services (n = 25 clinicians) in a large U.K. healthcare trust. From each clinician, up to five randomly sampled case note sets were audited (total n = 122), and the clinicians were invited to complete the TDFQ. For feedback, data on the behaviours and barriers were shared visually and verbally with managers and clinicians to inform action planning. RESULTS: A Method for using Audit and feedback for Participation implementation (MAPi) was developed. The MAPi audit template captured clinicians' practices: Clinicians targeted participation in 37/122 (30.3%) of the sampled cases; involved child/parent in 16/122 (13.1%); and measured progress in 24/122 (19.7%). Barriers identified from the TDFQ and fed back to managers and clinicians included clinicians' skills in participation-focused behaviours (median = 3.00-5.00, interquartile range [IQR] = 2.25-6.00), social processes (median = 4.00, IQR = 3.00-5.00), and behavioural regulation (median = 4.00-5.00, IQR = 3.00-6.00). CONCLUSIONS: MAPi provides a practical, off-the-shelf method for front-line services to investigate and support their implementation of participation-focused practice. Furthermore, as a shared, consistent template, MAPi provides a method for generating cumulative and comparable, across-services evidence about levels and trends of implementation and about enduring barriers to implementation, to inform future implementation strategies.

Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy.

OBJECTIVES: To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date. METHODS: Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITÉ Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents. RESULTS: Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The "agreement" classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called "growing discrepancy." CONCLUSIONS: Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.

Family-provider consensus outcomes for children with medical complexity.

AIM: To describe the process of obtaining consensus of outcome priorities between families of children with medical complexity (CMC) and their healthcare providers (HCPs) for the purpose of evaluating changes to service delivery. METHOD: The consensus of outcomes involved surveying families of CMC and HCPs and an in-person consensus meeting. Priorities were obtained from the survey using a stratified ranking approach ensuring equal representation among unequally sized subgroups. An in-person meeting was held using the survey results to inform Delphi voting. RESULTS: Families of CMC (n=40) and HCPs (n=74) responded to the survey. Consensus generated three main target areas (child health, family health, experience of care) covered by 15 specific outcomes needed to evaluate care. Differences between family and HCP perceptions of importance were found for child self-care, play, social skills, and recreation as well as emotional health (for both parent and child) outcomes. INTERPRETATION: Families of CMC and HCPs identified common priorities for outcome evaluation of CMC initiatives. Outcomes that differ in importance between families of CMC and HCPs should be studied further. WHAT THIS PAPER ADDS: Families of children with medical complexity and their providers can reach consensus on important outcomes. Stratifying subgroups ensures diverse representation, which is important to outcome prioritization.

CONSENSO EN LOS OBJETIVOS ENTRE LA FAMILIA Y LOS PROFESIONALES DE LA SALUD PARA NIÑOS CON COMPLEJIDAD MÉDICA: OBJETIVO: Describir el proceso para lograr un consenso sobre los objetivos prioritarios entre las familias de niños con complejidad médica (NCCM) y los profesionales de la salud (PS) con el fin de evaluar cambios en la prestación de servicios. METODO: La búsqueda del consenso en los objetivos involucró una encuesta a las familias de NCCM y PS y luego una reunión en persona para lograr un consenso. Se identificaron las prioridades en la encuesta utilizando una clasificación estratificada para garantizar una representación equitativa entre los subgrupos de tamaño desigual. Luego se llevó a cabo una reunión en persona, utilizando los resultados de la encuesta para crear una votación tipo Delphi. RESULTADOS: Las familias de NCCM (n = 40) y los PS (n = 74) respondieron a la encuesta. El consenso generó tres áreas principales (salud del niño/a, salud familiar, experiencia de atención) cubiertas por 15 resultados específicos necesarios para evaluar la atención. Se encontraron diferencias en la percepción de importancia de los objetivos entre la familia y los profesionales de la salud en las áreas del autocuidado del niño, el juego, las habilidades sociales y la recreación, así como los objetivos para la salud emocional (tanto para padres como para niños). INTERPRETACIÓN: Las familias de NCCM y los PS identificaron prioridades comunes para la evaluación de resultados de iniciativas para hacer cambios en la atención médica. Las diferencias entre los objetivos de las familias de NCCM y PS deben estudiarse con más detalle.

RESULTADOS CONSENSUAIS ENTRE FAMÍLIA-PROFISSIONAL PARA CRIANÇAS COM COMPLEXIDADE MÉDICA: OBJETIVO: Descrever o processo de obter consenso dos resultados prioritários entre famílias de crianças com alta complexidade médica (ACM) e profissionais de saúde (PSs) para avaliar mudanças na prestação de serviços. MÉTODO: A obtenção de consenso dos resultados envolvidos foi obtida entrevistando ACMs e PSAs e por meio de um encontro pessoalmente. Prioridades foram obtidas a partir da entrevista usando uma pontuação estratificada assegurando representação igual entre grupos com tamanhos diferentes. Um encontro pessoalmente aconteceu usando os resultados da pesquisa para informar a votação Delphi. RESULTADOS: Famílias de AMCs (n=40) and PSs (n=74) responderam às questões. O consenso gerou três áreas principais (Criança, família, experiência de cuidado) cobertas por 15 resultados específicos necessários para avaliar o cuidado. Diferenças entre percepções da família e de PSs e as percepções de importância foram obtidas para auto-cuidado da criança, brincar, habilidades sociais, e recreação, assim como saúde emocional (para pais e filhos). INTERPRETAÇÃO: Famílias de AMCs e PSs identificaram prioridades comuns para avaliacão de resultados em iniciativas de ACM. Resulados que diferem em importância entre famílias de AMCs e PSs devem ser considerados em futuros estudos.

Quality of life assessment scales in polio survivors: a scoping review.

BACKGROUND: Quality of life evaluation is essential to explore the effect of paralytic polio on the daily life experience of the polio survivor. Researchers have employed a range of assessment instruments to evaluate quality of life among polio survivors. Hence, to select the appropriate scale, it is crucial to compare the contents and psychometric properties of these instruments. PURPOSE: This scoping review explores quality of life instruments that are used in polio literature and analyzes their contents and psychometric properties using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) criteria. METHOD: Using the Arksey and O'Malley framework, we conducted a literature search in the following electronic databases Medline, CINAHL, Web of Science, Embase, and Google Scholar to identify relevant studies that focused on quality of life of polio survivors. Of the 88 articles that qualify for full-text screening, 34 studies met our inclusion criteria. Two independent reviewers extracted data from the selected studies via Covidence, a reference manager that allows for blinding of reviews. RESULTS: Most of the instruments included in this review are generic, self-reported, and multidimensional. Despite having mostly adequate psychometric properties, these properties were not evaluated in polio survivors. CONCLUSION: The information provided in this review could be used to guide instrument selection and identify the need to develop a new tool or to adapt a pre-existing scale for measuring quality of life among polio survivors.

Functional Recovery in Critically Ill Children, the "WeeCover" Multicenter Study.

OBJECTIVES: To evaluate functional outcomes and evaluate predictors of an unfavorable functional outcome in children following a critical illness. DESIGN: Prospective observational longitudinal cohort study. SETTING: Two tertiary care, Canadian PICUs: McMaster Children's Hospital and London Health Sciences. PATIENTS: Children 12 months to 17 years old, admitted to PICU for at least 48 hours with one or more organ dysfunction, were eligible. Patients not expected to survive, direct transfers from neonatal ICU and patients in whom long-term follow-up would not be able to be conducted, were excluded. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The primary endpoint was functional outcome up to 6 months post PICU discharge, measured using the Pediatric Evaluation of Disabilities Inventory Computer Adaptive Test. Secondary outcomes included predictors of unfavorable functional outcome, caregiver stress, health-related quality-of-life, and clinical outcomes such as mortality, length of stay, and PICU-acquired complications. One hundred eighty-two patients were enrolled; 78 children (43.6%) had functional limitations at baseline and 143 (81.5%) experienced functional deterioration following critical illness. Ninety-two (67.1%) demonstrated some functional recovery by 6 months. Higher baseline function and a neurologic insult at PICU admission were the most significant predictors of functional deterioration. Higher baseline function and increasing age were associated with slower functional recovery. Different factors affect the domains of functioning differently. Preexisting comorbidities and iatrogenic PICU-acquired morbidities were associated with persistent requirement for caregiver support (responsibility function) at 6 months. The degree of functional deterioration after critical illness was a significant predictor of increased hospital length of stay. CONCLUSIONS: This study provides new information regarding functional outcomes and the factors that influence meaningful aspects of functioning in critically ill children. Identifying patients at greatest risk and modifiable targets for improvement in PICU care guides us in developing strategies to improve functional outcomes and tailor to the rehabilitation needs of these patients and their families.

Child- and parent-reported quality of life trajectories in children with epilepsy: A prospective cohort study.

OBJECTIVE: To describe the developmental trajectories of quality of life (QoL) in a large cohort of children with epilepsy, and to assess the relative contribution of clinical, psychosocial, and sociodemographic variables on QoL trajectories. METHODS: Five assessments during a 28-month prospective cohort study were used to model trajectories of QoL. Participants were recruited with their parents from six Canadian tertiary centers. A convenience sample of 506 children aged 8-14 years with epilepsy and without intellectual disability or autism spectrum disorder were enrolled. A total of 894 children were eligible and 330 refused participation. Participating children were, on average, 11.4 years of age, and 49% were female. Nearly one third (32%) had partial seizures. At baseline, 479 and 503 child- and parent-reported questionnaires were completed. In total, 354 children (74%) and 366 parents (73%) completed the 28-month follow-up. QoL was measured using the child- and parent-reported version of the Childhood Epilepsy QoL scale (CHEQOL-25). RESULTS: Child-reported QoL was fitted best by a six-class model and parent-reported QoL by a five-class model. In both models, trajectories remained either stable or improved over 28 months. Of these children, 62% rated their QoL as high or moderately high, defined as at least one standard deviation above the average CHEQOL-25 score. Greater family, classmate, and peer social support, fewer symptoms of child and parent depression, and higher receptive vocabulary were identified as the most robust predictors of better QoL (all p < 0.001). SIGNIFICANCE: Most children with epilepsy and their parents reported relatively good QoL in this first joint self- and proxy-reported trajectory study. Findings confirm the heterogeneous QoL outcomes for children with epilepsy and the primary importance of psychosocial factors rather than seizure and AED-specific factors in influencing QoL. These predictors that are potentially amenable to change should now be the focus of specific intervention studies.

Extracurricular participation among children with epilepsy in Canada.

INTRODUCTION: Participation in extracurricular activities creates opportunities for children to foster friendships, promote a sense of belonging, and improve physical and mental well-being. The objective of this study was to determine the relationship(s) of personal factors, seizure variables, and social supports with extracurricular participation in children with epilepsy (CWE). METHODS: Baseline analysis of the QUALITÉ longitudinal study cohort of children aged 8-14 years (N=426) was conducted. Variables hypothesized to be related to the participation of CWE were classified using the International Classification of Functioning, Disability and Health according to body functions (presence of generalized tonic-clonic seizures in the past month, on/off AEDs, and seizure severity), environmental factors (perceived social support from parents and friends), and personal factors (sex, age, family structure, and family income). Analysis of variables related to extracurricular participation was conducted with regression modeling. RESULTS: Personal factors of age, gender, and family structure as well as body function variables of generalized tonic-clonic seizures and seizure severity were found to be the most important to extracurricular participation based on how frequently they were included in the final models (16/16 and 13/16 times, respectively). When parental support was found to be related to participation, the association was negative in 6 out of 16 models. DISCUSSION: The personal factors that are related to extracurricular participation among children with epilepsy mirror samples based on the general population, although seizures also play an important role. The relationship between perceived parental support and actual participation levels warrants further exploration.

Enhancing interprofessional education and practice: Development and implementation of a new graduate-level course using the international classification of functioning, disability, and health.

Since the introduction of the World Health Organization's International Classification of Functioning, Disability and Health (ICF), there is increasing awareness among health professionals to consider a biopsychosocial approach to patients' health and functioning. Although diffusion of the ICF as a concept is widely recognized, application of the ICF within health education and practice requires attention, training, and support. This article describes the development and implementation of a new graduate-level course using the ICF to assist health professionals and graduate trainees in rehabilitation. The innovation behind this course is its focus on application of the ICF in research and practice through a combination of peer support and instructor mentorship. The value of the ICF for interprofessional education, research, and practice includes promotion of a broad perspective to health, application of theory in practice, and enhanced communication and collaboration in healthcare.

Quality of life in children with epilepsy: How does it compare with the quality of life in typical children and children with cerebral palsy?

Our objective was to compare the quality of life (QoL) of children with epilepsy to that of typical children and children with cerebral palsy (CP). We measured self- and proxy-reported QoL of children with epilepsy and contrasted that with data for typical children (European KIDSCREEN project) and children with CP (SPARCLE study). Children ages 8-12 years with epilepsy were recruited from six Canadian sites. Same-aged children with CP and children in the general population aged 8-11 years came from several European countries. All participants completed the KIDSCREEN-52 questionnaire. Our results showed no clinically important differences (>0.5 SD) between self-reported QoL in 345 children with epilepsy compared with 489 children with CP or 5950 children in the general population. However, parents reported clinically important differences between the epilepsy and the other groups in five KIDSCREEN-52 domains. Compared with the CP group, parents of children with epilepsy reported better QoL in physical well-being (Cohen d=0.81), social support (d=0.80), and autonomy (d=0.72). Parents reported poorer QoL in the domains of mood and emotions compared with both contrast groups (d=-0.72 and d=-0.53), and in the domain of bullying compared with the CP group (d=-0.51). Families should find comfort in the results, which indicate that children with epilepsy do not perceive any important differences in QoL compared with their typical peers. The comparisons of parental reports detect their group-specific observations and worries that need to be addressed by the health-care providers and may require specifically designed assessment batteries followed by appropriate interventions.

Patient-reported outcome measures in pediatric epilepsy: a content analysis using World Health Organization definitions.

OBJECTIVE: Patient-reported outcome (PRO) measures that assess the effect of epilepsy on children's lives include the concepts of health, health-related quality of life (HRQOL), and quality of life (QOL). They also contain varied health and health-related content. Our objectives were to identify what generic and epilepsy-specific PRO instruments are used in childhood epilepsy research and to make explicit their conceptual approach and biopsychosocial content. METHODS: MEDLINE, EMBASE, and PsycINFO were searched from 2001 to 2011 for PRO measures used in pediatric epilepsy. Measures were analyzed on an item-by-item basis according to World Health Organization (WHO) definitions of QOL and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) biopsychosocial health framework to distinguish the conceptual approach within each measure. The health content analysis coded each item according to specific ICF-CY components of body function, activity and participation, environment, or personal factors to determine the health content for each measure. RESULTS: Three generic and 13 epilepsy-specific PRO measures were identified; 10 of 16 measures utilized a biopsychosocial health approach rather than an HRQOL or QOL approach. Content analysis showed that in 11 of 16 measures, >25% of the items represented participation and activity components of the ICF-CY, whereas a high proportion of environment items were found in only one epilepsy-specific measure. SIGNIFICANCE: This comprehensive review provides information aiding clinicians and researchers in the selection of the appropriate PRO instruments for children with epilepsy on the basis of content. Most epilepsy-specific and generic PROs use a biopsychosocial health approach as opposed to a subjective HRQOL/QOL approach to measurement. Clinicians and researchers must be aware of these concepts and content when intending to measure outcomes validly.

Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review.

AIMS: The aims of this study were to (1) search the literature in order to identify the challenges facing adolescents and emerging adults with epilepsy; and (2) categorize these issues within both the framework of the International Classification of Functioning, Disability and Health (ICF) and an empirical model of quality of life (QOL) in childhood epilepsy. METHOD: We systematically searched PsycINFO, Ovid MEDLINE and Web of Science for studies reporting on QOL and health identified in people with epilepsy aged 12 to 29 years. Studies were limited to those that were published in the last 20 years in English, presenting the patient perspective. Data were extracted and charted using a descriptive analytical method. Identified issues were classified according to the ICF and QOL frameworks. RESULTS: Fifty four studies were identified. Another 62 studies with potentially useful information were included as an addendum. The studies highlight a range of psychosocial issues emphasizing peer acceptance, social isolation, and feelings of anxiety, fear, and sadness. INTERPRETATION: The ICF and QOL constructs represent useful starting points in the analytical classification of the potential challenges faced by adolescents with epilepsy. Progress is needed on fully classifying issues not included under these frameworks. We propose to expand these frameworks to include comorbidities, impending medical interventions, and concerns for future education, employment, marriage, dignity, and autonomy.

Patient-important activity and participation outcomes in clinical trials involving children with chronic conditions.

PURPOSE: Children with chronic conditions experience medical issues over long-term periods of time which can have lasting emotional and social consequences impacting daily life and functioning. Activities and participation outcomes are needed in order to comprehensively assess child-important health in clinical trials. Our objective was to review the extent to which activity and participation outcomes are included in clinical trials of childhood chronic disease and to determine what trial characteristics are associated with their use. METHODS: A review of a large clinical trial registration database (clinicaltrials.gov) was conducted over the 2010 calendar year. The measures used to assess primary and secondary endpoints were coded according to the ICF classification system. Trial characteristics that might be associated with activity and participation outcome use such as sponsorship type, intervention type, health condition, whether the trial was focused on pediatric patients, phase of trial and sample size were also extracted and explored with univariable and multivariable regressions. RESULTS: Four hundred and ninety-nine trials met inclusion criteria, 495 of which had complete information about hypothesized predictors. Only 36 out of 495 trials included an activity and participation outcome as part of the trial evaluation process. Both univariable and multivariable regression models showed that non-drug trials and late phase of trial (phase IV) showed the strongest likelihood with whether a trial would include an activity and participation outcome. DISCUSSION: Most registered clinical trials for children with chronic or ongoing medical conditions do not include a comprehensive approach to health outcomes assessment, especially drug trials and early phase trials. Outcome measures in pediatric clinical trials are lagging relative to World Health Organization standards for comprehensive health evaluation.

A review of patient-reported outcomes for children and adolescents with obesity.

INTRODUCTION: Obesity is a chronic condition that can impact the physical, emotional, mental and social elements that encompass a child's life. The objectives of this study were to identify which generic and obesity-specific patient-reported outcome (PRO) instruments are used in obesity literature, as well as review their conceptual approach, health and health-related content, ethical content and psychometric properties. METHOD: PubMed, CINAHL, EMBASE and PsycINFO were searched from the inception of each database to May 2012 to identify all studies using multi-dimensional PRO instruments with children who are overweight or obese. The most common generic and all obesity-specific instruments were analyzed according to the study objectives. RESULTS: From 4,226 articles identified by our search, 70 articles used 6 generic and 4 obesity-specific PRO instruments. While the most commonly used PRO instrument was the generic PedsQL 4.0 (used in 53 studies), many health domains were found in the obesity-specific instruments that are not measured by the PedsQL 4.0. Summary of the development and psychometric properties of the generic and obesity PROs identified that no one instrument meets all the guideline criteria for instrument development and validation, e.g., only one instrument included qualitative input from children with obesity in the content development phase. DISCUSSION: This comprehensive review provides information to aid in selecting multi-dimensional PRO instruments in children with obesity according to various aspects of content as well as psychometric properties. The conceptual analysis shows that the reviewed PRO instruments contain inconsistencies in their conceptual approaches. Also, certain relevant health domains to children and youth with obesity were not included in the most commonly used generic instrument. The obesity-specific instruments require further validation before they can be used in intervention studies.

Mental health of caregivers of children with medical complexity: group-based trajectory modelling.

OBJECTIVE: To describe the mental health trajectories of caregivers of children with medical complexity (CMC) and explore child characteristics associated with below-average caregiver mental health. DESIGN: A secondary analysis of prospectively collected data from 123 caregivers of children aged <16 years with medical complexity from a multicentre randomised trial conducted from December 2016 to June 2021. MAIN OUTCOME MEASURE: The Patient-Reported Outcomes Measurement Information System Global Mental Health Scale was used to measure caregivers' self-reported mental health well-being. Group-based trajectory analysis was used to identify clusters of caregivers with similar changes in mental health across 24 months. Logistic regression was used to identify child-related predictors of mental health among caregivers. RESULTS: A final model with three distinct groups was selected, corresponding to caregivers with average (n=39), moderately below-average (n=65) and severely below-average (n=19) mental health scores, all with stable trajectories and high posterior probabilities (>90%). Moderately and severely below-average caregiver mental health groups, merged into one group, were associated with a greater number of child medical technology devices (adjusted OR (aOR) 1.44, 95% CI 1.01 to 2.04), gross motor difficulties (aOR 3.51, 95% CI 1.02 to 12.05) and worse child emotional (aOR 0.93, 95% CI 0.87 to 0.99) and psychological well-being (aOR 0.93, 95% CI 0.88 to 0.99). CONCLUSION: Most caregivers of CMC reported persistently below-average mental health. The intensity of caregiving, as indicated by medical technology and child functional needs, is a potential risk factor for below-average caregiver mental health. Future design and evaluation of interventions focused on support for caregivers of CMC are warranted.

Perceptions and behaviors of healthcare providers towards rehabilitation support to children with severe malaria-related disability in Ethiopia: A qualitative descriptive study using the Theoretical Domains Framework.

INTRODUCTION: Severe malaria often results in childhood disability. The prevalence of disability related to severe malaria is significant and is estimated to affect up to 53% of severe malaria survivors. In contrast, information is sparse about how healthcare providers in Africa think about or provide rehabilitation support in acute and post-acute phases respectively. Understanding the perceptions and behaviors of healthcare providers treating malaria could help inform malaria-related disability research, policy, and practice, aimed at the providers themselves. This study explored the perceptions and behaviors of healthcare providers towards rehabilitation for children with severe malaria-related disability. The Theoretical Domains Framework was used to describe the findings relative to wider literature on health provider behavior change. METHODS: A qualitative descriptive approach was used to interview thirteen healthcare providers recruited purposively based on their clinical professions, roles, and settings. Data were analyzed using directed content analysis. We decided on the most prominent theoretical domains considering the frequency of specific perceptions and behaviors across the participants, the frequency of perceptions and behaviors in each domain, and evidence of strong perceptions and behaviors. RESULTS: Nine out of fourteen theoretical domains were identified. These domains were: Beliefs about consequences, environmental context and resources, goals, knowledge, skills, optimism, reinforcement, social influences, and social or professional role and identity. Healthcare providers' beliefs about their roles in screening for disability or referring to rehabilitation were less positive. CONCLUSIONS: The findings of this study suggest the need for interventions to support healthcare providers in acute phases (prevention and control of severe malaria) and post-acute phases (disability screening, referral, and rehabilitation care). Recommended interventions should focus on developing clinical guidelines, training clinicians, addressing institutional factors, and modifying external social influences such as socio-cultural factors.