Participation In Life Situations Research Articles

Speech and language therapists’ perceptions of contextual factors associated with communicative participation in children with developmental language disorders

Children with developmental language disorders (DLDs) may experience barriers to communicative participation. Communicative participation is defined as ‘participation in life situations in which knowledge, information, ideas or feelings are exchanged’. Barriers experienced in communicative participation cannot be explained by language competence alone and are thought to be influenced by contextual factors. A better understanding of these factors will contribute to tailored speech and language therapy services for children with DLD. We conducted a focus group study with 13 speech and language therapists’ (SLTs) to explore their perspectives on contextual (environmental and personal) factors in early childhood that are associated with communicative participation in children with DLD. The personal factor of child well-being, and the environmental factors of familial support and SLT service provision were developed through thematic analysis. The potential mediating role of these factors on communicative participation implies that it is important to address contextual barriers and facilitators in speech and language therapy services.

Persistência de Sintomas um ano após Infeção por SARS-COV-2 em trabalhadores e seu desempenho em atividades e participação em situações de vida

Introduction Although most individuals recover after acute infection by SARS-CoV-2, others may suffer from persistent symptoms with potential medium and long-term consequences on the performance of activities and participation, with possible implications for their fitness for work. Objective To analyze the persistence of symptoms twelve months after SARS-CoV-2 infection, and the perception of the performance level in activities and participation in life situations, of workers in a company of the industrial sector in the Aveiro Region. Methodology An observational study, developed in an Occupational Health Service of an industrial company in the region of Aveiro, including workers with positive SARS-COV-2 RT-PCR/TRAg test, between October/2020-January/2022. After signaling the infection, the Occupational Health Team applied a questionnaire collecting sociodemographic variables, a list of common symptoms during the acute phase of infection by SARS-COV-2, and the perceived functionality assessed by the Portuguese version of WHODAS 2.0-PT12 (where ’12 points’ means the most functionality). At twelve months, they filled out another list of persistent symptoms after SARS-CoV-2 infection and again WHODAS 2.0-PT12. Data analysis included descriptive statistics and univariate and multivariate linear regression. The analysis was conducted with the software JASP 0.16.3. Results Eighty-five workers were infected with SARS-CoV-2, with a mean age of 36.1±9.8years, 77.7% were male, 36.7% had higher education and 17.7% reported at least one chronic condition. At twelve months, thirty workers (35.3%) reported persistent symptoms, with fatigue (27.7%) and arthralgia (14.4%) being the most mentioned. The mean WHODAS 2.0 in the two evaluation moments was 19.2±8.0 vs 15.7±5.0. Significant associations between WHODAS 2.0 items and persistent symptoms of fatigue, headache, cough, myalgia, arthralgia, and previous chronic disease were found. Conclusions Persistent symptoms twelve months after acute SARS-CoV-2 infection have repercussions on workers’ self-perception of performance in some activities and participation in life situations. The occupational health team can implement continuous surveillance of the infected worker’s health, assess the presence of persistent symptoms of this infection, and implement an individualized rehabilitation program, which minimizes the impact of the persistence of symptoms on their work performance, and in activities and participation in life situations. KEYWORDS: Occupational Health, Occupational Medicine; Occupational Health Nursing, SARS-CoV-2, Symptoms, WHODAS 2.0.

Poststroke Communication Ability Predicts Patient-Informant Discrepancies in Reported Activities and Participation.

Participation in life situations has been identified by people with aphasia (PWA) as an ultimate outcome of rehabilitation and is often measured with patient-reported outcome measures (PROMs) or informant-reported measures. It is known that PWA and informants do not always produce similar scores on measures of activities and participation. However, systematic differences between PWA and informants and the causes of these differences are not well understood. Here, we investigated these differences as a function of language impairment, perceived level of activity and participation success, and depressive symptoms. Participants were 29 PWA-informant dyads who completed a performance-based language assessment and three measures related to different aspects of activities and participation. Outcome variables were PWA-informant difference scores in the activities and participation measures. PWA ratings of activities and participation were not statistically significantly associated with performance-based language severity. Hierarchical regression models with both language impairment and informant-reported scores as predictor variables explained 53%-71% of the variance in PWA-informant difference scores (all p < .05). In particular, mild communication challenges were associated with the PWA reporting significantly worse participation than the informant perceived. In contrast, more severe communication challenges were associated with the PWA reporting significantly better participation than the informant perceived. These findings highlight the importance of measuring participation by PROM. The PWA's experience of participation is not related to their level of language impairment and is predictably different from their care partners' perspective. As others have also reported, "mild" aphasia is not so mild to the PWA. Similarly, "severe" may not be so severe to the PWA. Further research is needed to connect these findings with counseling and caregiver education. Research on response processes (e.g., response shift) is also warranted.

Experiences of having lived with Broca’s aphasia: a scoping review

Introduction: Broca’s aphasia, a non-fluent aphasia, is a frustrating condition with extensive psychological, familial, and social impact. The reports of people who have already recovered or can express themselves are essential to increasing knowledge about the experience of living with Broca’s aphasia. A-FROM is a framework designed to organize thinking about the impact of living with aphasia and includes four key domains: Communication and language environment; Language and related impairments; Personal identity, attitudes and feelings, and Participation in life situations. Nursing intervention is central to optimizing recovery and positively influencing the experience of successfully living with this clinical condition. Objective: To map scientific evidence about the experience of people who lived through a period of Broca’s aphasia. Methods: A Scoping Review was performed following the Joanna Briggs Institute methodology. The review was based on the research question, "How does the person report the experience of having lived through a period of Broca’s aphasia?", formulated according to the PCC strategy. The search was carried out in MEDLINE®, CINAHL®, Psychology and Behavioral Sciences Collection, and Scopus electronic databases in November 2022. Articles were selected based on the eligibility criteria. The review followed the PRISMA-ScR EQUATOR checklist. Results: Seventeen articles published between 1961 and 2022 were included. Data obtained were grouped according to the key domains of the A-FROM tool. Information related to Personal identity, attitudes and feelings, and Participation in life situations were the most cited, followed by Language and related impairments and Communication and language environment. Conclusion: It was identified that health professionals, therapeutic interventions, spirituality, hope, context, interactions, and psychosocial factors influence the experience of Broca’s aphasia. It is essential to continue investigating how people report the experience of having lived through a period of Broca’s aphasia to improve the quality of care and people's quality of life.

The effects of fatigue, gross motor function, and gender on participation in life situations of school-aged children with cerebral palsy: A parental perspective

ObjectiveTo investigate the effects of fatigue, gross motor function, and gender on participation in life situations of school-aged children with cerebral palsy (CP) from a parental perspective. MethodsThe study included 209 children with CP aged between 5 and 13 years (mean age, 8.06 ± 2.41 years; girls, 45.5%) and their parents. Fatigue, gross motor function, and participation status were evaluated with the Pediatric Quality of Life (PedsQL), Gross Motor Function Classification System (GMFCS), and the Assessment of Life Habits (Life-H) questionnaire, respectively. The effects of fatigue, gross motor function, and gender on participation were investigated with linear regression analysis. ResultsAccording to parental reports, 79.9% of the children had fatigue. Children in all GMFCS levels experienced fatigue. Fatigue and GMFCS levels were dependent variables, and therefore only simple linear regression analyses were performed. Fatigue explained 38–43% of the variances in daily activities, social roles, and total Life-H scores, while gross motor function explained 48–65% of the variances in scores (p < 0.001). Gender had no effect on participation scores (p > 0.05). ConclusionMore than two thirds of the school-aged children with CP had fatigue. Fatigue and poor gross motor function had a negative effect on participation in daily activities and social roles.

Participation Among Community-Dwelling Older Adults During the COVID-19 Pandemic: A Cross-Sectional Analysis.

Participation in life situations is a critical aspect of health recognized by the World Health Organization. Guidelines to prevent spreading of COVID-19 place older adults at risk of worsening participation. The purpose of this study was to identify the factors associated with participation during the COVID-19 pandemic among community-dwelling older adults living in Hamilton, Ontario, Canada. Participants were recruited from identified census dissemination areas in Hamilton. Participants completed surveys either by phone or online during the months of May to August 2020. Measures were organized into factors related to body functions and structures, activities, participation, as well as personal and environmental contextual factors using the International Classification of Functioning, Disability, and Health (ICF) framework. Multivariable regression analysis was conducted to identify factors associated with participation as measured by the Late-Life Disability Instrument's (LLDI) frequency and limitations scales. A total of 272 older adults completed the survey (78 [7.3] years; 70% female). Use of a walking aid, driving status, perceived mental health status, nutrition risk, and physical function explained 48.2% of the variance observed in the LLDI-frequency scale scores. Use of a walking aid, driving status, perceived mental health status, receiving health assistance, and physical function explained 38.5% of the variance observed in the LLDI-limitation scale scores. Results highlighted factors across multiple ICF domains that are associated with participation restriction among a sample of community-dwelling older adults during the pandemic. Participation during the pandemic was greatest in those that were able to walk without needing to use a walking aid, being a licensed and current driver, perceiving good to excellent mental health, and having greater physical function. Our findings contribute to the literature on older adult participation during lockdowns, restrictions, pandemics, and/or other similar circumstances.

Factors associated with participation in life situations in people with COPD

ObjectiveTo examine potential determinants of participation frequency and limitations in people with Chronic Obstructive Pulmonary Disease (COPD).MethodsFor this secondary analysis, we grouped the following factors using the International Classification of Functioning, Disability and Health (ICF) components: age, psychological distress (Hospital Anxiety and Depression Scale (HADS)), gait aid use, supplemental oxygen use, grip strength, modified Medical Research Council Dyspnea scale, Short Physical Performance Battery, and Six-Minute Walk Test (6MWT). Participation was measured using the frequency and limitation domains of the Late Life Disability Instrument (LLDI). Relationships between factors and participation were examined using linear regression.ResultsNinety-six participants (age 68.7 ± 8.1 yrs; FEV1 %pred 34 IQR 25–54) were included in the analysis. Factors were linked to four ICF components: activity, body functions, personal, and environmental factors. The final model for LLDI-frequency contained HADS, use of gait aid, and 6MWT (F (3, 81) = 27.69 (p < .001), R2 = 0.51), and for LLDI-limitations, the final model included age, HADS, and 6MWT (F (3, 82) = 19.74 (p < .001), R2 = 0.42).DiscussionParticipation in life situations in people with COPD is associated with multiple ICF components. Psychological distress (i.e., anxiety and depression symptoms) and mobility were important determinants of participation frequency and limitations. Prospective studies are needed to confirm these relationships.

The Importance of Collaboration in Pediatric Rehabilitation for the Construction of Participation: The Views of Parents and Professionals

Purpose: Collaboration between parents and professionals is essential to enable participation of children with disabilities. Participation is a widely researched topic in pediatric rehabilitation, and evidence for it providing opportunities for involvement and a sense of belonging in community and in larger society exists. There are, however, less research results on how collaboration builds participation pertaining to involvement in life situations. In collaboration with parents, therapists and teachers, the aim of the study was to describe factors that (a) promote and (b) prevent participation in life situations for school-aged children with disabilities, working towards participation in adulthood. Methods: The study applied a qualitative research design. The data was collected during the 2015–2016 academic year with five focus-group interviews by sampling procedure. The study involved five parents of children with disabilities, three therapists and two teachers. The research data was analyzed by inductive content analysis. Results: The results identified thirteen factors that promote child participation, with an emphasis on taking the child’s individuality into account. There were three barriers, which focused on attitudes or technical issues. Conclusions: The results suggest that collaboration on child-related factors has been well identified and implemented, but collaboration on enabling environmental factors needs to be developed. The results can be utilized to design what adults’ collaboration should focus on in promoting child participation.

Occupational Performance Coaching With Parents to Promote Community Participation of Young Children With Developmental Disabilities: Protocol for a Feasibility and Pilot Randomized Control Trial.

Background: High rates of restricted community participation have been reported in young children with developmental disabilities. Occupational performance coaching (OPC), grounded in self-determination theory, aims to facilitate children's participation in life situations through coaching parents. However, there have been limited randomized controlled trials demonstrating the efficacy of OPC, especially with a specific focus on children's community participation. The proposed study is the first step in evaluating the feasibility and acceptability of conducting a pilot randomized controlled trial of OPC in Hong Kong and testing its initial efficacy (in comparison to parent consultation) in promoting children's community participation.Method/Design: A feasibility and pilot double-blind randomized controlled trial will be undertaken. Fifty children aged 6 years or below with developmental disabilities and their parents will be recruited from early intervention centers and/or through social media in Hong Kong. Parents will be randomly assigned to receive OPC or consultation, and will be blinded to group allocation. Outcomes will be assessed by blinded assessors at baseline, pre-intervention, post-intervention, and follow-up. Predetermined success criteria will be used to assess the feasibility of the trial. Qualitative interviews will be conducted with parents to explore the acceptability and perceived impact of OPC.Discussion: This trial will test whether the study protocol and OPC are feasible and acceptable, as well as assess the initial efficacy of OPC to obtain effect size estimates. The results of the trial will inform future preparations for conducting a full-scale efficacy trial of OPC.Trial Registration: ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health (#NCT04796909), Registered on 15th March 2021.

Regul-A: A Technological Application for Sensory Regulation of Children with Autism Spectrum Disorder in the Home Context.

(1) Background: Sensory processing disorder is now recognised as a core feature of autism spectrum disorder that influences children’s adaptive behaviours, which, in turn, may interfere with their participation in life situations. This study describes the process of developing a technological platform, in the form of an app, to help families regulate children with ASD, aged 3–6 years old, by applying sensory strategies to improve the child’s participation in daily routines in the home context. (2) Methods: A focus group formed by four specialised occupational therapists who intervene with children with ASD was selected in order to understand and discuss content that should be included in the app. At a later stage, a group of three was involved to ensure quality and veracity in technological platform elaboration. (3) Results: The purpose of the app, named Regul-A, is to help parents regulate children with ASD regarding their participation in home routines. The sensory strategies provided by the focus group in the three major occupations of the child were the first results obtained, followed by the development of the app structure. (4) Conclusions: The next phase of the study will be the use of the platform by families of children with ASD and occupational therapists. It is believed that, in the future, Regul-A will be used as a tool to gather, analyse and manage data on the occupational performance of children with ASD in the home context, particularly for activities of daily living, sleep, rest and play, facilitating the implementation of strategies and the sharing of information between parents and occupational therapists.

The Effect of Lifestyle Interventions on the International Classification of Functioning, Disability and Health Participation Domain in Older Adults: A Systematic Review and Meta-Analysis

The World Health Organization's International Classification of Functioning, Disability and Health (ICF) recognizes participation in life situations as a major component of health. Identifying interventions that target this component is critical, particularly in older adulthood, where declines in physical functioning can impact participation. The purpose of this study was to evaluate the effectiveness of lifestyle or behavior change interventions on the ICF participation domain in older adults. MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), AgeLine (EBSCO), PsycINFO (Ovid), and AMED (Ovid) were searched from inception to April 2020 for randomized controlled trials comparing the effects of any behavior change or lifestyle intervention to usual care among community-dwelling adults ≥60 years with respect to participation-related domains of the ICF. The protocol was registered with Prospero (CRD42019125334). Eight studies with a total of 1,548 participants were included. No significant effect on participation outcomes was found (standardized mean difference 0.04; 95% CI -0.19 to 0.26; p = .76) and the quality of evidence was judged to be very low. Lifestyle or behavior change interventions showed limited effect on participation in later life. However, there remains much uncertainty in the estimate of this effect due, in part, to the low quality of the included studies. Measurement tools that are responsive to changes in participation in older adulthood should be used to determine the effect of such interventions. Improving study design will lead to more efficacious interventions that promote participation for our aging population.

Prevalence of Recreational Interest in Geriatric Population

Background: Recreational therapy “means a treatment services designed to restore, remediate and rehabilitatea person’s level of functioning and independence in life activities, to promote health and wellness. As wellas reduce or eliminate the activity limitations and restrictions to participation in life situations caused by anillness or disabling condition. Recreational therapy especially in senior citizens is important because seniorcitizens can suffer from loneliness, depression and anxiety which can lead to loss of physical functioningand can contribute to early death. Objectives: Objectives of the study were to determine the prevalenceof Recreational interest in geriatric population Material and Method: In this observational study, 100subjects were assessed using Recreational Activity Interest Questionnaire and Recreational Activity InterestScale. Results: Statistical analysis of Recreational Activity Interest Questionnaire and Recreational ActivityInterest Scale were found to be extremely significant. Conclusion: The study concluded that majority ofpopulation were aware of recreational activities and those who were not aware of recreational activitiesshould be made aware of the same

Online peer mentorship programmes for children and adolescents with neurodevelopmental disabilities: A systematic review.

Children and adolescents with neurodevelopmental disabilities may be less well integrated into their community than their peers. Online groups can be particularly accessible for individuals with neurodevelopmental disabilities, as individuals may be able to connect with a larger network than they would in their local community. This systematic review aimed at estimating the effectiveness of online peer mentorship programmes on children and adolescent's participation in life situations. A systematic review was conducted to search Medline, PsycINFO, Embase, CINAHL, and Education Research Complete (ERIC) electronic databases. Thematic analysis was done for studies that used qualitative methodology. Eleven articles were included, and they examined the influences of five different structured online peer mentorship intervention programmes and six different online support groups. The disabilities included cerebral palsy (n = 3), autism spectrum disorder (n = 3), spina bifida (n = 2), attention deficit hyperactivity disorder (n = 2), and other neurodevelopmental disorders. The mentors included in the studies were caregivers of children with disabilities, youth and adults with disabilities, and a virtual peer actor. The mentees included in the studies were youth with disabilities (age 10-19 years) and their families. Intervention characteristics varied across the studies but consistently showed a unique potential to facilitate social networking and support. Intervention programmes with specific content and structure showed better participation outcomes than unstructured interventions. Presence of a moderator and participant characteristics (age and sociocultural background) was suggested to influence the outcomes of interventions. Online peer mentorship programmes appear to have positive influence on social engagement and participation in life situation for children and adolescents with disabilities. This paper discusses several areas that should be considered in future research studies to improve potential effectiveness and use of study designs that help to establish not only if interventions work but also for whom they work best and why.

Effects of functional communication interventions for people with primary progressive aphasia and their caregivers: a systematic review

Objectives: Primary progressive aphasia (PPA) is a language led dementia characterised by progressive speech and language difficulties. Impairment focused PPA interventions that seek to remediate, alleviate or improve symptoms, dominate the research literature. Yet speech and language therapists (SLTs) report prioritising functional communication interventions (FCIs), which target engagement in an activity and participation in life situations. This systematic review investigates the research literature on FCIs for PPA to identify the key components of these interventions and their effectiveness.Method: A systematic search of databases identified 19 studies published between 1998 and 2018. Data were extracted from the articles using the Intervention Taxonomy adaptation (ITAX).Results: Results show that the two most common components of FCIs are to build on communication strategies people currently use, and to practise these strategies with a communication partner. There are variations in the interventions, such as location and dosage. All 19 studies report improvements, of which eight report statistically significant results. Forty-two different measures are used across the 19 studies.Conclusion: This study highlights that building on existing strategies and practising these with a CP, are key components of FCIs for people with PPA, yet there remains a lack of clarity around optimal dosage. Further rigorous research using a core set of outcome measures is a priority in this area.

Psychiatric disability as mediator of the neurocognition-functioning link in schizophrenia spectrum disorders: SEM analysis using the Evaluation of Cognitive Processes involved in Disability in Schizophrenia (ECPDS) scale

The functional outcome in schizophrenia spectrum disorders is affected by multiple factors such as cognitive performance and clinical symptoms. Psychiatric disability may be another important determinant of functional outcome. The purpose of this study was to test whether schizophrenia symptoms and psychiatric disability mediated the association between cognition and functioning.Between April 2013 and July 2017, we included 108 community-dwelling adults with stable schizophrenia spectrum disorder in a multicenter study. Psychiatric disability was assessed with the Evaluation of Cognitive Processes involved in Disability in Schizophrenia (ECPDS) scale by relatives of patients. ECPDS focused on the broad array of motivational, neurocognitive, sociocognitive, and metacognitive impairments that result in activity restrictions. We used a battery of tests to assess seven cognition domains (processing speed, attention/vigilance, working, verbal and visual memory, reasoning and problem solving, and executive functioning) and cross-sectional structural equation modeling (SEM) for the mediation analyses. We estimated the one-year temporal stability of ECPDS scores in 45 participants.The model provided showed good fit and explained 43.9% of the variance in functioning. The effect of neurocognition on functioning was fully mediated by symptoms (proportion mediated: 36.5%) and psychiatric disability (proportion mediated: 31.3%). The ECPDS score had acceptable one-year temporal stability.The ECPDS scale has satisfactory psychometric properties, and shows significant convergence with neurocognition and functioning, suggesting a role for this tool in the routine evaluation of cognitive remediation needs. Our model validates psychiatric disability as a crucial step from cognitive impairment to restricted participation in life situations.

Mixed-Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sjögren's Syndrome Patients.

ObjectiveFunctional ability and participation in life situations are compromised in many primary Sjögren's syndrome (SS) patients. This study aimed to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions.MethodsGroup concept mapping, a semiquantitative, mixed‐methods approach was used to identify and structure ideas from UK primary SS patients, adult household members living with a primary SS patient, and health care professionals. Brainstorming generated ideas, which were summarized into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions.ResultsA total of 121 patients, 43 adult household members, and 67 health care professionals took part. In sum, 463 ideas were distilled down to 94 statements. These statements were grouped into 7 clusters: Patient Empowerment, Symptoms, Wellbeing, Access and Coordination of Health Care, Knowledge and Support, Public Awareness and Support, and Friends and Family. Patient Empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self‐manage symptoms of oral and ocular dryness, fatigue, pain, and poor sleep.ConclusionOur data highlighted the fact that in addition to managing primary SS symptoms, interventions aiming to improve patient empowerment, general wellbeing, access to health care, patient education, and social support are important to facilitate improved participation in daily living activities.

The prevalence and severity of disease-related disabilities and their impact on quality of life in neuromuscular diseases

Purpose: People with neuromuscular disease experience lower quality of life levels than people from the general population. We examined the prevalence and severity of a broad range of neuromuscular disease-related disabilities and their impact on health-related quality of life.Materials and methods: A cross-sectional postal survey study was conducted among patients diagnosed with neuromuscular disease. Patients completed the Neuromuscular Disease Impact Profile, a disease-related disability impact questionnaire, and two generic health-related quality of life questionnaires: the medical outcome study Short Form Questionnaire and the World Health Organization Quality of Life-bref. The impact of disabilities on quality of life was estimated using multiple regression analyses.Results: Six hundred sixty two patients (68% response rate) completed the questionnaires. There were no differences in quality of life between diagnosis-based subgroups. ‘Impairments in muscle functions’ had the highest prevalence and severity scores in the total sample and diagnosis-based subgroups. Neuromuscular disease-related disabilities showed strong and independent associations with all aspects of health-related quality of life. ‘Impairments in mental functions and pain’ was the most important predictor of health-related quality of life followed by ‘restrictions in participation in life situations’.Conclusions: Although ‘impairment in muscle functions’ is the most prevalent and severe disability, the ‘impairments in mental functions and pain’ have a strong association with health-related quality of life in patients with a neuromuscular disease.Implications for rehabilitationDisease-related disabilities have a strong and independent associations with all aspects of health-related quality of life.Although health-related domains of quality of life are affected by the neuromuscular disease, the general quality of life is quite good.The most prevalent and severe disability in total group and diagnosis-based subgroups is ‘impairments in muscle functions’.The most significant predictor in health-related quality of life is ‘impairments in mental functions and pain’.

The value of therapeutic outdoor programs with adolescents in a rural residential treatment center: A pilot study

The purpose of this study is to investigate how therapeutic recreation within a wilderness setting (aka therapeutic outdoor programming) affects youth functionality as measured by the Youth Comprehensive Risk Assessment (YCRA) utilizing pretest and post-test results. For purposes of this article, therapeutic recreation is defined as “a treatment service designed to restore, remediate and rehabilitate a person’s level of functioning and independence in life activities, to promote health and wellness as well as reduce or eliminate the activity limitations and restrictions to participation in life situations caused by an illness or disabling condition.”1 Results showed that youth from a residential treatment center (RTC) engaged in a therapeutic outdoor program in the form of overnight trips of at least 3 days reported overall improvements when compared to a matched control group.

Clinicians’ perspective on key domains in ANCA-associated vasculitis: a Delphi exercise

Objectives: The existing set of outcomes for anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) needs to incorporate views of outcome measure stakeholders to meet the current standards of outcome measurement proposed by the Outcome Measures in Rheumatology (OMERACT) initiative. This study identifies domains that clinical experts (one group of stakeholders) consider to be important to determining the impact of AAV using the International Classification of Functioning, Disability and Health (ICF), a framework that describes health along four components: body functions, body structures, activities and participation, and contextual factors.Method: An international group of clinicians with expertise in the clinical care of patients with vasculitis were identified through consultation with three major vasculitis societies. The relevant domains were determined using a three-round e-mail-based Delphi questionnaire.Results: Eighty-two clinicians were invited to participate in this study and 41 responded. Nineteen domains were identified as important by > 80% of participants: six body functions (energy, seeing, hearing, pain, respiratory, and renal function), seven body structures (peripheral nerves, eye, ear, nose, sinuses, lungs (and airways), and kidneys), three activities and participation (carrying out daily routine, remunerative employment, and recreation and leisure), and three environmental factors (medications, support and relationships, and health services, systems, and policies).Conclusions: Clinical experts focus on the physiological effects of AAV with less importance given to the effect of AAV on patients’ activities and participation in life situations and the role of contextual factors. This study represents a step towards incorporating views of a range of stakeholders into disease assessment in AAV.

Validation of a Dutch version of the Actionable 8-item screening questionnaire for neurogenic bladder overactivity in multiple sclerosis: an observational web-based study.

BackgroundIn patients with multiple sclerosis (MS) the impact of urological symptoms on quality of life and daily activities is considerable. Yet, a substantial percentage of patients may not be urologically evaluated and thus fail to be treated concordantly. The 8-item Actionable questionnaire is a validated English screening tool for the detection of neurogenic bladder overactivity in MS. To enable the use of the 8-item Actionable in The Netherlands and Belgium we translated the questionnaire into the Dutch language and investigated the test-retest reliability and the concurrent validity of the Dutch version.MethodsThe process of translating the English Actionable questionnaire into the Dutch language included forward translations and back-translations. Then, in an online observational study, MS patients completed the Dutch Actionable at Days 1 and 8, and the Multiple Sclerosis Quality of Life 54-Items (MSQoL-54) and Multiple Sclerosis Impact Profile (MSIP) questionnaires at Day 1; the Expanded Disability Status Scale (EDSS) score was assessed by phone at Day 1. For assessment of the test-retest reliability Pearson’s correlation coefficient (r) between the Day 1 and Day 8 Actionable scores was calculated. For assessment of the concurrent validity r values were calculated between the Day 1 Actionable score and the EDSS score, the Physical and Mental MSQoL-54 composites, and the MSIP domain and symptom disability scores.ResultsStudy population: N = 141 (106 female, 35 male) (80 relapsing remitting, 48 progressive, 13 unknown), mean age 47.8 (standard deviation [SD] 10.4) years, mean EDSS score 4.7 (SD 1.8); 137 patients completed the Day 8 assessment. Pearson’s r between Actionable scores Day 1 and Day 8: 0.85 (P < .0001). Pearson’s r between Actionable score Day 1 and scores for EDSS 0.41 (P < 0.0001), MSQoL-54 Physical −0.31 (P = 0.0002), MSQoL-54 Mental −0.29 (P = 0.0005), MSIP Excretion and Reproductive Functions 0.44 (P < 0.0001), Muscle and Movement Functions 0.39 (P < .0001), Basic Movement Activities 0.37 (P < 0.0001), Activities of Daily Living 0.32 (P < 0.0001), Participation in Life Situations 0.29 (P = 0.0006) and Mental Functions 0.20 (P = 0.0189).ConclusionsThe Dutch version of the Actionable urological screening tool for MS shows a good test-retest reliability and a good concurrent validity with disabilities and HRQoL.