Gross Motor Family Report: Refinement and evaluation of psychometric properties.

AIM: To refine the Gross Motor Family Report (GM-FR) using parents' input and to evaluate its psychometric properties. METHOD: In this measurement study, 12 parents of children and adolescents with cerebral palsy (CP), aged 2 to 18 years, classified in all levels of the Gross Motor Function Classification System (GMFCS), were interviewed about their experience completing the GM-FR (content validity). Parents' feedback was used to refine the measure which was then completed by 146 families to evaluate internal consistency, and discriminative and concurrent validity. Forty-six parents completed the GM-FR again, 7 to 30 days later, to evaluate test-retest reliability. RESULTS: GM-FR scoring, pictures, descriptions, and the total number of items were revised based on parents' feedback. The GM-FR version 2.0 demonstrated high internal consistency (Cronbach's α = 0.99), no floor/ceiling effects, and excellent test-retest reliability (intraclass correlation coefficient = 0.99). GM-FR scores discriminated between GMFCS levels (p < 0.05) and were strongly negatively correlated with GMFCS level (r = -0.92; p < 0.001). GM-FR scores correlated positively and strongly with the Gross Motor Function Measure-66 (r = 0.94; p < 0.001) and the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test mobility domain (r = 0.93; p < 0.001). INTERPRETATION: Active participation of families in the GM-FR's development facilitated creation of a family-friendly instrument. This study provides strong evidence of reliability and validity to support GM-FR use in clinical practice and research for assessing gross motor performance of children and adolescents with CP.

Personal and environmental factors and household assistance in Down syndrome: cross-sectional study.

According to a biopsychosocial framework, personal and environmental factors might be mediators or facilitators/barriers, respectively, to functioning. However, it is not known how these factors can impact independence in household chores in children/adolescents with Down syndrome (DS). This study explored whether and how personal/environmental factors are associated with the independence level in household chores of children/adolescents with DS in Brazil. Caregivers of twenty-eight children/adolescents with DS were interviewed using the CHORES and a standardized questionnaire about personal (child's age and sex) and environmental (socioeconomic level and maternal schooling) factors. Multiple linear regression analysis identified if/how these factors are associated with level of independence. For CHORES self-care and CHORES total, sex was a significant variable explaining 21.8% and 15.8%, respectively, of the variation in the outcomes. For the outcome CHORES family care none of the variables was significant. Female sex was associated with a lower need for assistance. We conclude that only the personal factor assessed related to female sex in children with DS was associated with the independence level in household chores. This finding highlights the importance of health care providers and families to encourage the independence in chores regardless of sex and promote opportunities for both boys and girls.

Disseminating the F-Words for Child Development to Parents of Children With Developmental Disabilities in Iran: A Qualitative Pilot Feasibility Study.

BACKGROUND: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability. METHODS: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis. RESULTS: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged. CONCLUSION: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran.

"From All, To All": Implementing a collaborative online conference to reflect on the daily living of individuals with cerebral palsy.

BACKGROUND: Translating knowledge to improve paediatric rehabilitation has become a research area of interest. This study describes the development and evaluation of an online conference that brought together perspectives of individuals with cerebral palsy (CP), families, health care professionals, and researchers to discuss the daily living of individuals with CP. METHODS: We anchored the development and implementation of the online conference in the action cycle of the Knowledge to Action Framework. To develop the meeting, we included representatives from each stakeholder group in the programme committee. The conference programme was designed having the lifespan perspective of individuals with CP, from birth to adulthood, as its central core, with themes related to daily living (e.g., self-care, mobility, and continuing education). Participants' satisfaction with the conference was assessed using an anonymized online survey sent to all participants. RESULTS: The conference had 1656 attendees, of whom 675 answered the online satisfaction survey. Most participants rated the structure of the conference (i.e., quality of the technical support, audio and video, and online platform) and discussed topics (i.e., relevance, content, discussion, speakers, and available time) positively. CONCLUSION: Collaborative conferences that include stakeholders throughout the planning and implementation are a viable, effective knowledge translation strategy that allows for sharing experiences and disseminating knowledge among families and individuals with CP, health care professionals, and researchers.

Desenvolvimento de crianças, adolescentes e jovens adultos com Paralisia Cerebral de acordo com a CIF? Uma revisão do escopo.

A CIF pode ser usada para mapear uma série de desfechos por meio de estudos de desenvolvimento. Os principais desfechos investigados em crianças com PC foram atividade e estrutura e função corporal. Pouco tem sido explorado os desfechos de participação e fatores contextuais ao longo do tempo. A principal classificação utilizada para estratificar os participantes foi o Sistema de Classificação da Função Motora Grossa. Estudos futuros devem ampliar seu foco para diferentes áreas da CIF, e na transição para a vida adulta. Estudos sobre o desenvolvimento de indivíduos com PC ajudam terapeutas e pais a planejarem abordagens de tratamento e prognóstico futuro. Os principais desfechos investigados em indivíduos com PC foram atividade e estruturas e funções corporais. Pouco tem sido explorado em desfechos de participação e de fatores contextuais ao longo do tempo.

OBJETIVOS: Identificar e fornecer uma visão geral descritiva dos estudos de desenvolvimento de crianças, adolescentes e jovens adultos com paralisia cerebral (PC); e mapear áreas de foco de acordo com os componentes da Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF) da OMS. MÉTODO: Estudos longitudinais do desenvolvimento de crianças, adolescentes e/ou jovens adultos com PC foram incluídos nesta revisão de escopo. A busca por estudos elegíveis foi realizada nas bases de dados: MEDLINE, PubMed, LILACS, EMBASE, Cochrane, CINAHL, Scopus, e foi restrita aos anos de 2002-2022. Todas os desfechos dos estudos foram classificados em componentes da CIF. RESULTADOS: Nos 56 estudos incluídos, houve 19.438 participantes, envolvendo principalmente crianças, seguidas de adolescentes e, por último, jovens adultos. Todos os componentes da CIF foram investigados e muitos estudos relataram resultados em mais de um componente. O componente atividade foi o mais investigado (67,9%; n = 38 estudos), seguida da estrutura e função corporal (42,9%; n = 24 estudos). A participação (14,2%; n = 8 estudos) e os fatores ambientais (3,6%; n = 2 estudos) foram os menos estudados. Nenhum dos estudos investigou fatores pessoais como desfecho. INTERPRETAÇÃO: Esta revisão de escopo fornece uma visão geral dos estudos sobre o desenvolvimento de crianças, adolescentes e jovens adultos com PC, usando a estrutura da CIF, identificando áreas atuais de foco e lacunas. Estudos futuros devem visar a participação, os fatores contextuais e a transição para a vida adulta. O QUE ESTE ESTUDO ADICIONA: A CIF pode ser usada para mapear uma série de desfechos por meio de estudos de desenvolvimento. Os principais desfechos investigados em crianças com PC foram atividade e estrutura e função corporal. Pouco tem sido explorado os desfechos de participação e fatores contextuais ao longo do tempo. A principal classificação utilizada para estratificar os participantes foi o Sistema de Classificação da Função Motora Grossa. Estudos futuros devem ampliar seu foco para diferentes áreas da CIF, e na transição para a vida adulta.

Development of children, adolescents, and young adults with cerebral palsy according to the ICF: A scoping review.

AIM: To identify and provide a descriptive overview of the development of children, adolescents, and young adults with cerebral palsy (CP) in longitudinal studies; and map areas of focus according to the components of the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). METHOD: Longitudinal studies of the development of children, adolescents, and/or young adults with CP were included in this scoping review. A search for eligible studies was conducted in the databases MEDLINE, PubMed, LILACS, EMBASE, Cochrane, CINAHL, and Scopus, and was restricted to the years 2002 to 2022. All outcome measures of the studies were classified into ICF components. RESULTS: In the 56 studies included, there were 19 438 participants, involving mainly children, followed by adolescents, and lastly young adults. All components of the ICF were investigated and many studies reported outcomes in more than one component. Activity was the most investigated (67.9%; n = 38 studies), followed by body functions and structures (42.9%; n = 24 studies). Participation (14.2%; n = 8 studies) and environmental factors (3.6%; n = 2 studies) were the least studied. None of the studies investigated personal factors as an outcome. INTERPRETATION: This scoping review provides an overview of studies on the development of children, adolescents, and young adults with CP, using the ICF framework, identifying current areas of focus and gaps in the research. Future studies should target participation, contextual factors, and the transition into adulthood. WHAT THIS PAPER ADDS: The International Classification of Functioning, Disability, and Health can be used to map a range of outcomes through developmental studies. The main outcomes investigated in children with cerebral palsy were activity, and body functions and structures. Little has been explored in participation and contextual factors outcomes over time. The main classification used to stratify the participants was the Gross Motor Function Classification System.

Christy Brown's 'My Left Foot': An insider's insights into growing up with cerebral palsy.

IMPORTANCE: The field of childhood disability has undergone a sea-change in the past two decades. Remarkably, 70 years ago, the ideas now taking root were expressed with poignant clarity by Ireland's Christy Brown, providing lessons that were there to be learned, illustrating why 'My Left Foot' remains a singular contribution to the literature about child development and disability. OBJECTIVE OF THIS ESSAY: The World Health Organization's 2001 reconsideration of 'disability' (the International Classification of Functioning, Disability and Health or ICF) has spawned considerable uptake and adaptation of contemporary concepts, notably with the 'F-Words for Childhood Disability' (now the 'F-words for Child Development'). Published in 1954, Christy Brown's ground-breaking poetic autobiography 'My Left Foot' resonates today with messages that bring the ICF to life vividly and memorably. REVIEW: The author, a developmental paediatrician, has refracted the themes of 'My Left Foot' through an ICF lens to illustrate that concepts now considered modern have long been in plain sight, but sadly ignored. Christy Brown's first-person narrative animates ideas and messages for all who work in the field of childhood disability. FINDINGS: This essay is a personal reflection that draws together both contemporary 21st century concepts and ideas from the time that Christy Brown was a young author reporting his perspectives and perceptions on living with 'disability'. CONCLUSIONS AND RELEVANCE: The lessons Christy Brown generously shared 70 years ago should be heeded today. In the context of modern thinking and action regarding 'childhood disability', we need an approach to all we do that sees and respects children with 'disabilities' as whole people, that situates them in the context of family and community, that identifies and promotes their strengths and aspirations within both the health professional community and the community at large and enables them to 'become' and to 'belong'.

Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement.

This review explores children's self-reported outcome measurements in pediatric neurology. We examine the following questions: (1) What is meant by patient-reported health, functioning, and quality of life outcomes? (2) How can patients express whether the interventions they receive do more good than harm? (3) Why and how should pediatric neurology patients help determine the outcomes of interest? (4) What tools and recommendations are available to evaluate the outcomes of interest? Applying patients' perspectives across the processes of evaluation of medical interventions has become an important expectation. These developments, consistent with current healthcare goals, coincide with the evolution of pediatric neurology into a sophisticated diagnostic-interventional field that aims to prolong survival, decrease impairments and symptoms, and improve patients' well-being - the recognized essential endpoints of interest in all medicine.

Fisioterapia em crianças com paralisia cerebral no Brasil: uma revisão de escopo.

OBJETIVO: Identificar e avaliar os estudos publicados sobre fisioterapia em crianças e adolescentes brasileiros com paralisia cerebral (PC), usando o modelo da Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). MÉTODO: Artigos em inglês e português publicados até outubro de 2020, sem restrição de data, foram pesquisados em diferentes bases bibliográficas. Foram extraídos dados sobre as características do estudo, métricas do periódico, características da amostra, domínios da CIF explorados a partir dos componentes e desfechos das intervenções. Para caracterizar as evidências, os estudos foram classificados de acordo com os níveis de evidência do Centro de Medicina Baseada em Evidência de Oxford. RESULTADOS: Noventa e quatro estudos foram incluídos. Crianças com PC espástica e com menores limitações nas habilidades motoras grossas foram as mais reportadas; 67% dos estudos apresentaram baixos níveis de evidência e foram publicados em periódicos sem fator de impacto. As três intervenções mais frequentes foram o conceito neuroevolutivo Bobath/terapia do neurodesenvolvimento, a terapia com vestes e a estimulação transcraniana por corrente contínua. Os componentes das intervenções exploraram estruturas e funções do corpo (73,4%), atividade (59,6%) e ambiente (2,1%). Entretanto não exploraram a participação (0%). Os desfechos investigados abordaram atividade (79,8%), estruturas e funções do corpo (67,0%), participação (1%) e ambiente (0%). INTERPRETAÇÃO: Os estudos de intervenções fisioterapêuticas para crianças e adolescentes brasileiros com PC, apresentam maior foco em minimizar deficiências em estruturas e funções do corpo e limitações de atividades. São necessários mais estudos, com melhor nível de evidência e foco ampliado para a participação e os fatores ambientais.

Physical therapy in children with cerebral palsy in Brazil: a scoping review.

AIM: To identify and assess published studies concerning physical therapy in Brazilian children and adolescents with cerebral palsy (CP) using the International Classification of Functioning, Disability and Health (ICF) framework. METHOD: Articles in English and Portuguese published until October 2020, with no date restrictions, were searched in several different databases. Study characteristics, journal metrics, sample characteristics, and ICF domains explored intervention components and outcomes were extracted. Studies were classified according to the Oxford Centre for Evidence-Based Medicine hierarchy levels to characterize the evidence. RESULTS: Ninety-four studies were included. Spastic CP with fewer limitations in gross motor abilities was the most reported; 67% of the studies had low levels of evidence and were published in journals without an impact factor. The three most frequent interventions were neurodevelopmental treatment, suit therapy, and transcranial direct current stimulation. Intervention components explored body functions and structures (73.4%), activity (59.6%), environment (2.1%). They did not explore participation (0%). The outcomes investigated addressed activity (79.8%), body functions and structures (67.0%), and participation (1.1%), but not environment (0%). INTERPRETATION: Studies of physical therapy for Brazilian children and adolescents with CP focused on reducing impairments and activity limitations. Studies with higher levels of evidence and an expanded focus on participation and environmental factors are necessary.

The process of telepractice implementation during the COVID-19 pandemic: a narrative inquiry of preschool speech-language pathologists and assistants from one center in Canada.

BACKGROUND: Many professional services were pressed to adopt telepractice in response to the global coronavirus SARS-CoV-2 (COVID-19) pandemic. The need to adopt a new service delivery approach quickly created different implementation challenges. This study explored the lived experiences of frontline clinicians who successfully transitioned their in-person speech-language therapy services to telepractice through an implementation science lens. METHODS: The study was conducted in partnership with one publicly funded program in Ontario, Canada that offers services to preschoolers with speech, language and communication disorders. Sixteen frontline speech-language pathologists and assistants at this organization shared their lived experience transitioning to telepractice during the pandemic during videoconference interviews. A narrative inquiry approach was used to analyze interview transcripts to identify the processes (or steps) this program took to implement telepractice and to understand the facilitators and barriers to telepractice implementation during the pandemic. RESULTS: The following six stages were identified from clinicians' narratives: abrupt lockdown; weeks of uncertainty; telepractice emerged as an option; preparation for telepractice; telepractice trials; and finally, full implementation of telepractice. The stages of events offered significant insights into how government public health measures influenced clinicians' decisions and their processes of adopting telepractice. In terms of barriers, clinicians reported a lack of knowledge, skills and experience with telepractice and a lack of technological support. The organization's learning climate and team approach to transitioning services were identified as the main facilitator of implementation. CONCLUSIONS: Findings suggest a need for better coordination of public health measures and professional services, which would have eased clinicians' stress and facilitated an earlier transition to telepractice. Fostering an organization's learning climate may improve organization's resilience in response to emergency situations.

Factors influencing the success of telepractice during the COVID-19 pandemic and preferences for post-pandemic services: An interview study with clinicians and parents.

BACKGROUND: There has been a significant uptake in the use of telepractice during the coronavirus SARS-CoV-2 (COVID-19) pandemic. This study explored the experiences of speech and language therapists (SLTs), assistants (SLTAs) and parents with telepractice during the COVID-19 pandemic. AIMS: (1) To identify factors that influenced success of telepractice; and (2) to describe clinicians' and parents' preferences for the future mode of service delivery for preschoolers with communication disorders. METHODS & PROCEDURES: The study was conducted in partnership with one publicly funded programme in Ontario, Canada, that offered services to preschoolers with speech, language and communication needs at no cost. SLTs (N = 13), assistants (N = 3) and parents (N = 13) shared their experiences and perspectives during semi-structured videoconference interviews. OUTCOMES & RESULTS: Factors that influenced the success of telepractice were reported in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who was involved in telepractice). These factors were reported to interact with each other. As the needs for each child and family are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. CONCLUSIONS & IMPLICATIONS: The themes identified in this study can be used by clinicians and managers to consider factors that influence the success of telepractice for children and families. WHAT THIS PAPER ADDS: What is already known on the subject? Studies conducted before the COVID-19 pandemic showed that telepractice was an effective and acceptable service approach. However, some clinicians and parents reported wanting to resume in-person visits. The provision of telepractice services to families with children with communication disorders increased significantly during COVID-19. What this paper adds to existing knowledge? Parents and clinicians shared factors that influenced the success of telepractice during semi-structured interviews. Factors were identified in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who were involved in telepractice). As each child's and family's needs are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. What are the potential or actual clinical implications of this work? SLTs and SLT managers can use the factors identified to discuss with parents and decide whether telepractice may be well suited to the needs of each child and family.

Exploring 10 years of dissemination of the F-words for Child Development: A multifaceted case study.

BACKGROUND: There is growing interest in exploring how to move research findings into practice. Since 2014, a team of families and researchers has been working to promote and study the dissemination of the "F-words for Child Development" (Function, Family, Fitness, Fun, Friends, and Future). This case study describes our dissemination strategies and uses the Diffusion of Innovation theory to understand the factors contributing to the uptake of the F-words-a function-promoting, strengths-based, and family-centred innovation in child health and development. METHODS: Between November 2011 and November 2021, we collected data from multiple sources: our dissemination strategies, including affiliated documents/artefacts (e.g., videos and presentations) and evaluation data (e.g., surveys and Google/video analytics). We used a two-step analysis: (1) a chronological time series to describe the processes involved along with indicators of dissemination over time (e.g., increase knowledge and awareness); and (2) Diffusion of Innovation theory to explore the factors that contributed to the uptake of the F-words. RESULTS: Multifaceted dissemination strategies were essential to raise awareness and increase families' and service providers' knowledge of the F-words. These included three primary strategies: (i) development and distribution of educational materials; (ii) presentations at educational meetings; and (iii) educational outreach visits. Additional strategies, such as the use of mass media, collaboration with early adopters/champions, and the involvement of family members further supported dissemination efforts. Diffusion of Innovation factors (innovation characteristics, time, social systems, and communication channels) all contributed to the uptake of this innovation. CONCLUSIONS: Purposeful planned dissemination practice, to increase knowledge and awareness of an innovation, is an important step in the knowledge translation process. Over a period of 10 years, through the use of multiple dissemination strategies conducted in partnership with families and service providers, the F-words have spread globally. Diffusion of Innovation theory has served to help understand how and why the F-words are being shared and adopted around the world.

Analysis of Informative Content on Cerebral Palsy Presented in Brazilian-Portuguese YouTube Videos.

Aims: To describe the characteristics of the most accessed YouTube videos in Brazilian-Portuguese on cerebral palsy (CP), and to analyze content of informational videos about this topic.Methods: This was a cross-sectional study. Searching on YouTube website was conducted by two independent examiners between November and December 2019, using the keywords "Paralisia Cerebral" sorted by videos' number of views. Videos that did not present content related to CP or duplicate videos were excluded. The interaction parameters and content characteristics of the included videos were extracted. To access the trustworthiness and quality of informational videos, the modified Discern checklist and the Global Quality Score was used.Results: Following the eligibility criteria 90 videos were included. Fifty-three (53) were classified as experiential videos and 37 as informational videos. Informational videos presented multi-topics about different aspects of CP. This group of videos presented moderate trustworthiness due to the lack of scientific evidence content. Informational videos had good quality and generally good flow.Conclusion: YouTube presented a large number of videos about CP in Brazilian-Portuguese. Informational videos are useful for patients and healthcare providers; however, it is necessary to included information about scientific evidence, as a strategy to facilitate and promote knowledge translation.

Research on Children With Cerebral Palsy in Low- and Middle-Income Countries.

The purpose of this special communication is to present ideas and thoughts from a symposium at the 75th Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine. These included perspectives and lessons from 3 previously published review studies regarding cerebral palsy (CP) research in Brazil, India, and African countries, which explored the literature through the lens of the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework. Using this common lens, first we present the main findings of each of these articles, as well as the similarities and differences in CP research across these low- and middle-income countries (LMICs). Second, considering current evidence, lessons from other LMICs and based on our experiences, we raise recommendations of critical areas to be addressed such as ICF framework implementation and best evidence practice on CP, focusing on prevention, early diagnosis, and intervention (see Supplemental Digital Abstract, available at: http://links.lww.com/PPT/A413 ).

Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership.

INTRODUCTION: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. METHODS: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. FINDINGS: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. CONCLUSION: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

Engaging the Voices of Children: A Scoping Review of How Children and Adolescents Are Involved in the Development of Quality-of-Life-Related Measures.

OBJECTIVES: Patient-reported outcomes are increasingly recommended to guide patient care, develop and evaluate interventions, and modify health systems. However, not enough is known about whether and how children and adolescents, as "experts" in their own health and quality of life (QoL), are being engaged in the development of instruments. Our goals in this review were (1) to identify all QoL-related instruments that have included children and/or adolescents in the development of questionnaire content, including identification of themes and items; and (2) to report how this was done; and (3) to highlight those that used qualitative methods. METHODS: MEDLINE and Embase were searched for child- or adolescent-completed QoL-related instruments, supplemented by hand-searching of relevant reviews until 2020. Original development papers were identified and retrieved when possible, from which instrument characteristics and details of qualitative development methods were extracted. RESULTS: We identified 445 instruments, of which 88 used qualitative methods for content development. Interviews and focus groups were the most common methods. A variety of play techniques were used to engage the child and adolescent participants. The specific criteria for the inclusion of children and adolescents (age, developmental stage, duration, and nonclinical location) varied considerably. CONCLUSIONS: Researchers frequently involve children and adolescents in qualitative methods when developing QoL-related measures; however, there is little information about the methods used. Better reporting of methodology, improved dissemination of methods guidelines, and research into optimal ways of including children and adolescents in the process of instrument development would be useful.

Assessing communicative participation in preschool children with the Focus on the Outcomes of Communication Under Six: a scoping review.

AIM: To describe uses of the Focus on the Outcomes of Communication Under Six (FOCUS) in research with children with and without various communication disorders since its publication in 2010. METHOD: Six databases were searched for the term 'Focus on the Outcomes of Communication Under Six'. With additional searches we ascertained 70 articles, of which 25 met inclusion criteria for full review and data extraction. RESULTS: The FOCUS has been used in research across multiple countries, purposes, populations, contexts, and versions. Evaluative studies have described: the development of children's communicative participation skills and factors that impact the development of communicative participation; the impact of specific interventions on communicative participation; how FOCUS captures change relative to measures of impairment; and how FOCUS performs when used at different intervals. Adaptations have included: use of the FOCUS as a descriptive or discriminative tool; use with children outside the validated age range; use of select items; and use with typically developing children. INTERPRETATION: The FOCUS is used worldwide in research and practice, and much has been learned about children's communicative participation. Future research is needed to explore the relationship between children's impairments and their communicative participation, develop a FOCUS App, and develop and validate a FOCUS for school-age children.

Challenges of Guidelines: A Look at the Systematic Review of Clinical Guidelines Related to the Care of Individuals With Cerebral Palsy.

This essay is an invited commentary on the report "Systematic Review of Clinical Guidelines Related to Care of Individuals With Cerebral Palsy as Part of the World Health Organization Efforts to Develop a Global Package of Interventions for Rehabilitation" published in this journal. As a blinded reviewer of the original and revised versions of this interesting article, I was stimulated to reflect on several ideas about "clinical guidelines" and to take the opportunity to share concerns I have long held and that this article identified. Having said that, the thoughts expressed are mine alone and should not be ascribed to the authors of the article that provoked them. The case I offer is that guidelines may in some ways risk being outdated, insofar as they are crafted based on what we already know from research done in "earlier" times and with different conceptual frameworks than we now apply. I use the example of 20th century concerns about spasticity to illustrate my argument. I also suggest that they may be too prescriptive and restrictive. Instead, I raise for consideration the idea that we should turn the guidelines process on its head and use best available valid data to build toward contextualized problem-focused approaches to issues that are relevant to the individuals for whom they are meant to be useful- in this case, individuals with cerebral palsy, their families, and the service providers who work with them. It is my hope that these ideas stimulate discussion and reflection.

Strengths and challenges of the COSMIN tools in outcome measures appraisal: A case example for speech-language therapy.

BACKGROUND: The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) is an international initiative that offers standardized and validated tools to guide the appraisal of patient-reported outcome measures in healthcare. AIMS: To explore the use of a new set of tools from the COSMIN to appraise studies on one outcome measure available to speech and language therapists (SLTs). METHODS & PROCEDURES: We used the COSMIN tools to appraise seven studies and a user manual that reported the measurement properties of the Focus on the Outcomes of Children Under Six (FOCUS), a validated measure of pre-schoolers' communicative participation that is used in various contexts around the world. OUTCOMES & RESULTS: Using COSMIN guidelines, the FOCUS was categorized as a 'category A' tool because there was a sufficient level of evidence to support its content validity and internal consistency. According to the COSMIN guidelines, this means that the FOCUS can be recommended for use. The quality of evidence supporting measurement properties of the FOCUS received a rating of 'moderate', meaning users can have moderate confidence in its measurement properties. Since these ratings from the COSMIN tools may be unclear to users of the FOCUS, we have provided more specific recommendations. CONCLUSIONS & IMPLICATIONS: The COSMIN tools offer detailed standards to support the appraisal of outcome measures available to SLTs. However, several limitations were observed, and recommendations to support the application of the COSMIN tools are provided. What this paper adds What is already known on the subject Collecting outcome data is essential to ensure speech and language therapy is effective. Until the development of COSMIN there was a lack of standards in the way the measurement properties of outcome measure instruments were appraised. What this paper adds to existing knowledge This paper used the FOCUS, a measure of pre-schoolers' communicative participation outcomes in speech and language therapy, as a case example to illustrate the applications of the COSMIN tools. In doing so, the strengths and limitations of the current COSMIN tools in appraising the quality of outcome measure instruments are emphasized. What are the potential or actual clinical implications of this work? The COSMIN tools offer a step-by-step, standardized approach to appraise various measurement properties in outcome instruments. Due to existing limitations of the COSMIN tools, appraisal should provide clear and specific recommendations so users of outcome measures (e.g., SLTs, researchers) can identify the appropriate uses of each instrument.