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Disability is a consequence of severe malaria for a significant proportion of African children. This scoping review aims to describe the impact of severe malaria on African children according to current literature using an international biopsychical classification and framework of disability and functioning.MEDLINE, EMBASE, Global Health, and CINHAL databases were searched for original research conducted on African children aged 0-18 using terms related to severe malaria and components of disability. Independent and dependent variables were extracted and classified using the World Health Organization's International Classification of Functioning, Disability, and Health-Children and Youth version (ICF-CY) using standardized coding methods.Seventy-two percent of the measured variables in the 34 included studies were coded as "body functions," (i.e., impairments), such as mental, neuromusculoskeletal, movement, and sensory functions, and 23.3% of variables were coded as "activities and participation" (i.e., activity limitations/participation restrictions), such as difficulties with general tasks and demands, communication, mobility, interpersonal interactions, and relationships. "Environment" variables such as family support, health access, education, or societal attitudes were not found in the included studies.Existing peer-reviewed quantitative research of severe malaria-related disability is focused on neurological sequelae, with less research about activity limitations and participation restrictions.Promoting the use of a comprehensive biopsychosocial disability framework and classification system for severe malaria will provide a framework that other researchers, policymakers, and rehabilitation professionals can consider when looking at the best ways to support outcomes for children with severe malaria.Using a framework of the ICF-CY, we have highlighted the need for better research into child functioning outcomes in severe malaria research, especially within the domain of child participation.Policymakers should be encouraged to support better holistic evaluation, support, and rehabilitation of children who have had severe malaria.

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.

Children and youth with severe motor and communication impairment (SMCI) have difficulty providing self-expression through typical speech, writing with a paper and pencil, or using a standard keyboard. Their emotional expressions can be missed by peers and novel caregivers.To describe the indicators and components of emotional experiences for children/youth with SMCI.Primary guardians of nine children/youth with SMCI were involved in photo/video data collection and follow-up qualitative interviews. Twenty-one familiar people (e.g., friends, family members, and/or care team) participated in semi-structured qualitative interviews.A conceptual understanding of emotional well-being specific to the population has been developed consisting of nine themes, encompassed by four domains i) Core Attributes, ii) Personal Experiences, iii) Surroundings, iv) Expression and Reception.Emotional experiences of children/youth with SMCI are diversely expressed. Primary guardian and familiar person insight can be amplified to positively impact care and participation.

ImportanceChildren with medical complexity (CMC) have chronic conditions and high health needs and may experience fragmented care.ObjectiveTo compare the effectiveness of a structured complex care program, Complex Care for Kids Ontario (CCKO), with usual care.Design, Setting, and ParticipantsThis randomized clinical trial used a waitlist variation for randomizing patients from 12 complex care clinics in Ontario, Canada, over 2 years. The study was conducted from December 2016 to June 2021. Participants were identified based on complex care clinic referral and randomly allocated into an intervention group, seen at the next available clinic appointment, or a control group that was placed on a waitlist to receive the intervention after 12 months.InterventionAssignment of a nurse practitioner–pediatrician dyad partnering with families in a structured complex care clinic to provide intensive care coordination and comprehensive plans of care.Main Outcomes and MeasuresCo-primary outcomes, assessed at baseline and at 6, 12, and 24 months postrandomization, were service delivery indicators from the Family Experiences With Coordination of Care that scored (1) coordination of care among health care professionals, (2) coordination of care between health care professionals and families, and (3) utility of care planning tools. Secondary outcomes included child and parent health outcomes and child health care system utilization and cost.ResultsOf 144 participants randomized, 141 had complete health administrative data, and 139 had complete baseline surveys. The median (IQR) age of the participants was 29 months (9-102); 83 (60%) were male. At 12 months, scores for utility of care planning tools improved in the intervention group compared with the waitlist group (adjusted odds ratio, 9.3; 95% CI, 3.9-21.9; P P = .01).Conclusions and RelevanceThe CCKO program improved the perceived utility of care planning tools but not other outcomes at 1 year. Extended evaluation periods may be helpful in assessing pediatric complex care interventions.Trial RegistrationClinicalTrials.gov Identifier: NCT02928757

Background Complex Care for Kids Ontario (CCKO) is a multi-year strategy aimed at expanding a hub-and-spoke model to deliver coordinated care for children with medical complexity (CMC) across Ontario. Objective This paper aims to identify the facilitators, barriers and lessons learned from the implementation of the Ontario CCKO strategy. Method Alongside an outcome evaluation of the CCKO strategy, we conducted a process evaluation to understand the implementation context, process and mechanisms. Semi-structured interviews were conducted with 38 healthcare leaders, clinicians and support staff from four regions involved in CCKO care delivery and/or governance. Results Facilitators to CCKO implementation were sustained engagement of system-wide stakeholders, inter-organizational partnerships, knowledge sharing and family engagement. Barriers to CCKO implementation were resources and funding, fragmentation of care, aligning perspectives between providers and clinical staff recruitment and retention. Conclusion A flexible approach is required to implement a complex, multi-centre policy strategy. Other jurisdictions considering such a model of care delivery would benefit from attention to contextual variations in implementation setting, building cross-sector engagement and buy-in, and offering continuous support for modifications to the intervention as and when required.

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.

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. 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. 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. 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. 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.

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. 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. 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’. 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.

(1) Objective: The World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF) classification is a unified framework for the description of health and health-related states. This study aimed to use the ICF framework to classify outcome measures used in follow-up studies of coronavirus outbreaks and make recommendations for future studies. (2) Methods: EMBASE, MEDLINE, CINAHL and PsycINFO were systematically searched for original studies assessing clinical outcomes in adult survivors of severe acute respiratory distress syndrome (SARS), middle east respiratory syndrome (MERS) and coronavirus disease-19 (COVID-19) after hospital discharge. Individual items of the identified outcome measures were linked to ICF second-level and third-level categories using ICF linking rules and categorized according to an ICF component. (3) Results: In total, 33 outcome measures were identified from 36 studies. Commonly used (a) ICF body function measures were Pulmonary Function Tests (PFT), Impact of event scale (IES-R) and Hospital Anxiety and Depression Scale (HADS); (b) ICF activity was 6-Minute Walking Distance (6MWD); (c) ICF participation measures included Short Form-36 (SF-36) and St George’s Respiratory Questionnaire (SGRQ). ICF environmental factors and personal factors were rarely measured. (4) Conclusions: We recommend future COVID-19 follow-up studies to use the ICF framework to select a combination of outcome measures that capture all the components for a better understanding of the impact on survivors and planning interventions to maximize functional return.

Explore methods used in peer-reviewed literature for obtaining self-expression of well-being information from children with severe motor and communication impairment (SMCI). A comprehensive search was conducted on 22 August 2019 through academic databases: CINAHL; Embase; MEDLINE; PsycINFO; InSpec; Compendex. Search strategies were informed by keywords under the following areas: (1) population: children with SMCI, (2) assessment methods: alternative to natural speech, paper and pencil report or standardized keyboard use (e.g., eye gaze) and (3) target information: well-being (e.g., quality of life). Studies were excluded if they focused on individuals over 25-years old, exclusively autism or typically developing children. Non-duplicate studies of 10,986 were screened; 49 studies met inclusion criteria. Most studies used high-tech methods of self-expression in a single context (n = 17). Familiar partners play a significant role in self-expression; 18 studies required a familiar partner for children with SMCI to self-express. Thirty-five studies involved children self-expressing to solely adults, in comparison to 14 studies which involved peers. Findings highlight the advancement of high-tech communication devices restricted to application in single contexts. Familiar partner knowledge of children with SMCI has the potential to be shared with others (e.g., respite care providers), enhancing both caregiver and child well-being. Future research that would enhance the literature could explore the assessment of emotional well-being for application in various contexts using multimodal methods. Opportunities for children with SMCI to express their emotional well-being can further influence the understanding and enhancement of participation, social connections, and experiences.IMPLICATIONS FOR REHABILITATIONUse of lower tech methods of self-expression to obtain information directly from children with severe motor and communication impairment (SMCI) remain more feasible in home and school contexts.By utilizing familiar partners’ experiences and knowledge of the child, respite care providers, novel support workers, and others involved in the lives of children with SMCI can become further informed.Current high-tech methods for obtaining the emotional expressions of children with SMCI may benefit from incorporating multimodal approaches including lower tech methods, to be feasibly applied in real world contexts where well-being takes place.Further research on this topic is imperative to enable children with SMCI to self-express their emotional well-being which can enhance participation, activities, social connections, and experiences. Use of lower tech methods of self-expression to obtain information directly from children with severe motor and communication impairment (SMCI) remain more feasible in home and school contexts. By utilizing familiar partners’ experiences and knowledge of the child, respite care providers, novel support workers, and others involved in the lives of children with SMCI can become further informed. Current high-tech methods for obtaining the emotional expressions of children with SMCI may benefit from incorporating multimodal approaches including lower tech methods, to be feasibly applied in real world contexts where well-being takes place. Further research on this topic is imperative to enable children with SMCI to self-express their emotional well-being which can enhance participation, activities, social connections, and experiences.

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 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.

Background Outcomes in pediatric critical care research are typically selected by the researcher. Objectives (1) To identify outcomes prioritized by patients and their families following a critical illness and (2) to determine the overlap between patient-centered and researcher-selected study outcomes. Methods An exploratory descriptive qualitative study nested within a longitudinal cohort study conducted in 2 pediatric intensive care units (PICUs). Participants were purposively sampled from the primary cohort to ensure adequate demographic representation. Qualitative descriptive approaches based on naturalistic observation were used to collect data and analyze results. Data were coded by using the International Classification of Functioning, Disability, and Health Children and Youth (ICF-CY) framework. Results Twenty-one participants were interviewed a mean of 5.1 months after PICU discharge. Outcomes fell into 2 categories: patient-centered and family-centered. In the former, diagnosis, survival, and prognosis were key priorities during the acute critical illness. Once survival appears possible, functioning (physical, cognitive, and emotional), and factors that influence recovery (ie, rehabilitation, environment, and quality of life) are prioritized. Family-centered outcomes consisted of parents’ psychosocial functioning and experience of care. Patient-centered outcomes were covered well by the selected study measures of functioning, but not by the clinical outcome measures. Conclusion Functioning and quality of life are key patient-centered outcomes during recovery from critical illness. These are not well captured by end points typically used in PICU studies. These results justify the importance of patient- and family-centered outcomes in PICU research and a need to determine how these outcomes can be comprehensively measured.

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.

The current study sought to understand the contribution of the attention and working memory challenges experienced by children with active epilepsy without an intellectual disability to adaptive functioning (AF) while taking into account intellectual ability, co-occurring brain-based psychosocial diagnoses, and epilepsy-related variables. Methods The relationship of attention and working memory with AF was examined in 76 children with active epilepsy with intellectual ability above the 2nd percentile recruited from a tertiary care center. AF was measured using the Scales of Independent Behavior–Revised (SIB-R) and compared with norm-referenced data. Standardized clinical assessments of attention span, sustained attention, as well as basic and more complex working memory were administered to children. Commonality analysis was used to investigate the importance of the variables with respect to the prediction of AF and to construct parsimonious models to elucidate the factors most important in explaining AF. Results Seventy-one percent of parents reported that their child experienced mild to severe difficulties with overall AF. Similar proportions of children displayed limitations in domain-specific areas of AF (Motor, Social/Communication, Person Living, and Community Living). The reduced models for Broad and domain-specific AF produced a maximum of seven predictor variables, with little loss in overall explained variance compared to the full models. Intellectual ability was a powerful predictor of Broad and domain-specific AF. Complex working memory was the only other cognitive predictor retained in each of the parsimonious models of AF. Sustained attention and complex working memory explained a large amount of the total variance in Motor AF. Children with a previously diagnosed comorbidity displayed lower Social/Communication, Personal Living, and Broad AF than those without a diagnosis. At least one epilepsy-related variable appeared in each of the reduced models, with age of seizure onset and seizure type (generalized or partial) being the main predictors. Conclusion Intellectual ability was the most powerful predictor of AF in children with epilepsy whose intellectual functioning was above the 2nd percentile. Co-occurring brain-based cognitive and psychosocial issues experienced by children with living epilepsy, particularly complex working memory and diagnosed comorbidities, contribute to AF and may be amenable to intervention.

SummaryObjective 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.

IntroductionTechnological and medical advances have led to a growing population of children with medical complexity (CMC) defined by substantial medical needs, healthcare utilisation and morbidity. These children are at a high risk of missed, fragmented and/or inappropriate care, and families bear extraordinary financial burden and stress. While small in number (Methods and analysisOur primary objective is to evaluate the CCKO intervention using a randomised waitlist control design. The waitlist approach involves rolling out an intervention over time, whereby all participants are randomised into two groups (A and B) to receive the intervention at different time points determined at random. Baseline measurements are collected at month 0, and groups A and B are compared at months 6 and 12. The primary outcome is the family-prioritized Family Experiences with Coordination of Care (FECC) survey at 12 months. The FECC will be compared between groups using an analysis of covariance with the corresponding baseline score as the covariate. Secondary outcomes include reports of child and parent health outcomes, health system utilisation and process outcomes.Ethics and disseminationResearch ethics approval has been obtained for this multicentre RCT. This trial will assess the effect of a large population-level complex care intervention to determine whether dedicated key workers and coordinated care plans have an impact on improving service delivery and quality of life for CMC and their families.Trial registration numberNCT02928757.

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 QUALITE 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.

AIM: To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive information on disability risk in their children from early neurodevelopmental screening. METHOD: This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach. RESULTS: Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant’s illness ‘day by day’ and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. INTERPRETATION: Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation.

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.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.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.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.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.

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 QUALITE 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.

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.

SummaryObjective 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.

Background: The impact of childhood epilepsy can only be appreciated by understanding that epilepsy comprises a set of complex neurobehavioral conditions with significant social consequences, and not simply disorders of recurrent seizures. Our objective is to describe the hypotheses and methodology behind a large prospective longitudinal study that is based on a conceptual framework for understanding health outcomes. The study will quantify the specific influences—direct, mediating or moderating—that various epilepsy, comorbid, child, and family variables exert on health over the early life course. Methods: The target population is 8- to 14-year-old children with epilepsy and their caregivers from across Canada. Children, caregivers, and health professionals are completing 17 measures at five visits over a 28-month period. We have selected measures based on content, the source of the items, psychometric properties, and provisions for child self-report. Our cross-sectional and longitudinal design includes a relational model for structural equation modeling of specific biomedical and psychosocial variables with hierarchical direction of influence. To measure change over time, we will use hierarchical linear modeling. Significance: This article reports the framework for interpreting future data. We believe that it will help researchers consider their methodology and encourage them to plan and execute longitudinal studies. Furthermore, the article will help clinical readers identify what to look for when evaluating outcomes research. It is our belief that the next generation of research to understand life-course effect in the lives of children and youth with chronic conditions and their families must occur over real time.

KEY POINTS A key goal in health care is to improve outcomes that matter most to patients.[1][1] This is a poignant aim for a small but very important group: children with medical complexity and their caregivers. Children with medical complexity are defined by serious chronic conditions, functional

© 2016 Taylor & Francis. 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.

The publication of the International Classification of Disability, Functioning and Health Children and Youth (ICF-CY) version as a derived classification of the ICF has enabled child health and disability researchers to implement the classification into their work. There is little discussion available in the literature specifically about challenges associated with connecting ICF-CY to child health instruments. The objective of this study was to apply new reflections about linking and previous linking rules to a child-specific instrument using the Child Health Questionnaire as an example. We discovered the importance of knowledge in child health assessment as a linking requisite, issues with linking information about child behavior, the importance of clarifying the vantage point from which one is linking (e.g., child, parent, or family), and the fact that one should carefully consider the true purpose or targets of items before linking them to the ICF-CY, irrespective of the simple language used in the item. Finally, we propose the use of a new not-defined abbreviation to denote items that assess overall child development: not-defined-development (nd-dv).

The impact of cancer on children can be assessed through various concepts including mental and physical health status and most significantly quality of life (QOL). It has been difficult to compare data collected through these instruments due to a lack of continuity or understanding of overlaps and gaps between them. To delineate the content of the most commonly used instruments in childhood cancer on an item-by-item basis, this study used standardized methods to link health information to the International Classification of Functioning, Disability, and Health (ICF) as well as World Health Organization (WHO) standard definitions of health and quality of life. MEDLINE, CINAHL, EMBASE, PsycINFO, Cancerlit, and Sociological Abstracts were searched from the inception of each database to June 15th, 2009 for health status and quality of life instruments. The six most common cancer-specific and generic instruments employed in primary research in childhood cancer were analyzed on an item-by-item basis by two content assessors specializing in ICF linking and WHO definitions of health and QOL, using a standardized iterative technique developed at the ICF Research Branch. We report the extent to which health status and QOL are represented in each instrument. Most measures emphasize a majority health status perspective according to WHO definitions of health. The generic instruments stress activities and participation domains over body functions or environment factors according to the ICF while cancer-specific instruments vary in their emphasis. Initial phase of coding agreement between assessors was in the substantial range (0.6–0.8 using Cohen’s kappa). A comprehensive and systematic content analysis of the most commonly employed health status and QOL instruments was conducted for this review. Two criteria were described as follows: the perspectives of the instruments (i.e., health vs. QOL) and the health content (according to ICF components). No single instrument demonstrated an ideal balance of content characteristics according to these criteria, and thus, each must be considered carefully relative to one’s particular research or clinical evaluative purpose.

In 1976, the World Health Organization (WHO) estimated worldwide disability prevalence at 10%; recent evidence suggests the prevalence is even higher. Given the extent of disability around the world, it is essential for researchers and policy makers to have a uniform language for describing and discussing disability. The International Classification of Functioning, Disability and Health (ICF) is WHO's attempt to provide that standard language. Linking rules were published in 2002 and 2005 suggesting a method for standardising the process of connecting outcome measures to the ICF classification. The objective of this study is to study the extent to which the linking rules have been used by researchers to link health and health-related information to the ICF and collect the feedback about the current practices, applications and areas to improve the linking method.Using a systematic review of health-based literature between 2001 and February 2008, we (1) determined research areas where the linking method is applied, (2) examined the characteristics of studies that linked information to the ICF and (3) described current practices and issues related to the process of linking health and health-related information to the ICF both quantitatively and qualitatively.The systematic review yielded 109 articles from 58 journals that linked health information to the ICF and 58 of the articles employed published linking rules. The majority of articles were descriptive in nature, used linking for connecting content of health instruments to the ICF and linked English health content. Quality controls such as reliability checks, multiple raters and iterative linking processes were found frequently among users of the linking rules. Qualitative analysis created themes about: preparing units of information, who links to the ICF, reliability, matching or translating concepts from text to ICF categories, information unable or difficult to capture, quantitative reporting standards and overall linking process.This review also shows that the linking process is a useful way to apply the ICF classification in research. With over 100 articles published in 58 peer-reviewed journals across 50 focus areas, linking health and health-related information to the ICF has been shown to be a useful tool for describing, comparing and contrasting information from outcome measures used to collect quantitative data, qualitative research results and clinical patient reports across diagnoses, settings, languages and countries.

Objective: To explore predictors of optimism in parents of children with cancer. Methods: A cross-sectional multi-centre study of 411 parents of children in active treatment for cancer was conducted. The Life Orientation Test—Revised was used to assess optimism. Other appropriate items and standardized questionnaires were used to assess parent and child characteristics. Predictors of optimism were explored using simple and multiple linear regression modelling techniques. Results: The presence of positive intrapsychic traits, such as self-esteem and mastery, was more predictive of parental optimism than factors related to child cancer, such as the child's prognosis. Intrapsychic traits combined with an absence of parental depression, the parents' perception of the child's prognosis and parent education level predicted over 50% of the variance in parent optimism. Correlations between parents' and oncologists' view of the child's prognosis were low. Conclusions: Positive intrapsychic traits are important predictors of optimism in the presence of a parent's positive view of the child's prognosis and higher education levels in the absence of depression. The results also favour the perspective of optimism as a trait of the parent who is resilient to a life stressor, such as dealing with childhood cancer. Additional knowledge about the role of optimism in caregiving for a child with cancer is needed before it can be explored for assessment or intervention purposes. Copyright © 2010 John Wiley & Sons, Ltd.

Children with developmental coordination disorder experience difficulties with fine and gross motor tasks that affect their occupational performance. Research has found the Cognitive Orientation to daily Occupational Performance (CO-OP) measure to be an effective approach for improving skills in daily occupations with children between 7 and 12 years old who have developmental coordination disorder. The purpose of this single-case design study was to determine the effectiveness of using the CO-OP approach with children ages 5 to 7 years. Four children chose three different goals to work on during therapy. Child and parent Canadian Occupational Performance Measure ratings and performance observation ratings at follow-up demonstrated the effectiveness of the CO-OP approach, supporting the use of the CO-OP with younger children and suggesting further research on the CO-OP with younger children is warranted.

Feeding impairment is a complex problem impacting the health, development, and the nutritional status of many individuals in the paediatric population. Prevalence rates of feeding impairment span a wide range between 30–80% of children with neurological diagnoses (Field et al, 2003; Schwartz, 2003). Conversely there is sparse practice information available to guide professionals working on feeding teams on how to function effectively to deal with the problem. This report will provide a procedural example of a practice model that incorporates a dynamic team approach and comprehensive service delivery. The model is based on an innovative practice-driven feeding assessment procedure that integrates medical and rehabilitative perspectives. Discussion of the advantages, disadvantages, and future directions for the model will also be presented.

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.

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.

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.

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.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.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.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.

Aim: our aims were to (1) describe the conceptual basis of popular generic instruments according to World Health Organization (WHO) definitions of functioning, disability, and health (FDH), and quality of life (QOL) with health-related quality of life (HRQOL) as a subcomponent of QOL; (2) map the instruments to the International Classification of Functioning, Disability and Health (ICF); and (3) provide information on how the analyzed instruments were used in the literature. This should enable users to make valid choices about which instruments have the desired content for a specific context or purpose. Method: child health-based literature over a 5-year period was reviewed to find research employing health status and QOL/HRQOL instruments. WHO definitions of FDH and QOL were applied to each item of the 15 most used instruments to differentiate measures of FDH and QOL/HRQOL. The ICF was used to describe the health and health-related content (if any) in those instruments. Additional aspects of instrument use were extracted from these articles. Results: many instruments that were used to measure QOL/HRQOL did not reflect WHO definitions of QOL. The ICF domains within instruments were highly variable with respect to whether body functions, activities and participation, or environment were emphasized. Interpretation: there is inconsistency among researchers about how to measure HRQOL and QOL. Moreover, when an ICF content analysis is applied, there is variability among instruments in the health components included and emphasized. Reviewing content is important for matching instruments to their intended purpose

This paper discusses how to evaluate whether, and in what ways, treatments affect the lives of children with neurological conditions and their families. We argue that professionals should incorporate perspectives from patients and families to help them make decisions about what 'outcomes' are important, and we discuss how those outcomes might be assessed. A case vignette illustrates the differences and complementarity between the perspectives of clinicians and those of children and their parents. We recommend methods for expanding the range of relevant health outcomes in child neurology to include those that reflect the ways patients and families view their conditions and our interventions. We explore the added value of a 'non-categorical' approach to the choice of outcomes. The International Classification of Functioning, Disability and Health is a useful biopsychosocial framework to 'rule in' relevant aspects of child and family issues to create a dynamic system of possible influences on outcomes. We examine the meaning of 'health', 'health-related quality of life', and 'quality of life' as related but conceptually distinct outcomes. Specific issues are discussed about the construction, validation, and appraisal of outcome measures, as well as practical recommendations on how to select outcome measures in the clinical setting and research.

Content comparison of health-related quality of life (HRQOL) measures is currently important because of the varying use of concepts and operationalisations. Our objective was to use the International Classification of Functioning Children and Youth version (ICF-CY) as a standard by which to compare the content of all cerebral palsy (CP) disease-specific HRQOL measures.MEDLINE and PsycINFO databases were searched up to September 2008. The content of HRQOL measures was linked to the ICF-CY by two trained assessors. Agreement was calculated using kappa (κ) statistic.Four disease-specific HRQOL measures were identified. Three generic measures were selected as a content comparison group. A total of 576 concepts contained in the measures were identified. Eighty-nine percent (n = 510) were linked to 127 different ICF-CY categories. Overall κ agreement was 0.76 (95% CI: 0.75-0.77). Forty percent of concepts were linked to the activity and participation component. The measures varied in the number of concepts and the distribution of concepts by ICF-CY components.The ICF-CY provided an international accepted, structured framework for the content comparison of CP-specific and generic HRQOL measures. The results will provide clinicians and researchers with additional information, useful when selecting HRQOL measures.

Background. Anecdotal and empirical evidence indicates children with intractable epilepsy have difficulty completing daily occupations. There is a paucity of literature describing these issues from a client-centred perspective. Occupational issues in childhood epilepsy have historically been assessed by disability inventories. Purpose. This pilot study seeks to determine similarities and differences between occupational issues identified using a disability inventory and an individualized outcome measure among children with intractable epilepsy and their parents. Method. Goal identification was determined using two approaches to standardized measurement with 10 child-caregiver dyads. The Canadian Occupational Performance Measure (COPM) was the individualized measure for both parents and children. The Scales of Independent Behavior-Revised (SIB-R) disability inventory was completed by parents only. Agreement between the top three issues identified by the child COPM, parent COPM, and subscales of the SIB-R were compared. Findings. Although both of the outcomes employed in this study are standardized measures, they resulted in low agreement and the identification of different occupational issues for children with intractable epilepsy. Implications. This study provides a comparison of two different approaches to identifying goals. It also provides preliminary information on the types of occupational performance issues prioritized by children with intractable epilepsy and their parents.

Background. The Disability Tax Credit (DTC) Certification is an assessment tool used to provide Canadians with disability tax relief. The International Classification of Functioning, Disability and Health (ICF) provides a universal framework for defining disability. Purpose. The purpose of this study was to evaluate the DTC and familiarize occupational therapists with the process of mapping measures to the ICF classification system. Method. Concepts within the DTC were identified and mapped to appropriate ICF codes (Cieza et al., 2005). Results. The DTC was linked to 45 unique ICF codes (16 Body Functions, 19 Activities and Participation, and 8 Environmental Factors). Implications: The DTC encompasses various domains of the ICF; however, there is no consideration of Personal Factors, Body Structures, and key aspects of Activities and Participation. Refining the DTC to address these aspects will provide an opportunity for fair and just determinations for those who experience disability.