Dataset Information

Development of the Wheelchair outcomes Assessment Tool for Children (WATCh): A patient-centred outcome measure for young wheelchair users.

ABSTRACT:

Objective

To develop a patient-centred outcome measure (PCOM) for use with children and young people accessing National Health Service (NHS) wheelchair and posture services. Identifying and addressing outcomes of most importance to young wheelchair users (? 18 years) will help services maximise the benefits achievable within available resources.

Methods

A mixed-methods approach was used, involving questionnaire surveys and qualitative interviews, and building on previous work identifying how young wheelchair users define health-related quality of life (HRQoL). Framework analysis was used to analyse the interview transcripts. Survey questionnaires seeking views on the importance of a range of outcomes were completed by 21 young wheelchair users or their parents. Subsequent face-to-face interviews with 11 parents or dyads of parents and young wheelchair users explored these responses and identified novel outcomes. Interviewees also scored and recorded satisfaction levels for their key outcomes.

Results

All outcomes proposed in the survey were rated as 'extremely important' by at least one respondent, as were additional outcomes uncovered in the qualitative data. In consultation with the service providers and service users, the Wheelchair outcomes Assessment Tool for Children (WATCh) was developed to allow service users and providers to identify, score and monitor individual users' most important outcomes. The final WATCh tool comprises 16 outcome options, of which service users select five to be monitored. The tool will be used to measure key outcomes identified by service users before and after wheelchair provision.

SUBMITTER: Tuersley L

PROVIDER: S-EPMC6306207 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Development of the Wheelchair outcomes Assessment Tool for Children (WATCh): A patient-centred outcome measure for young wheelchair users.

Tuersley Lorna L Bray Nathan N Edwards Rhiannon Tudor RT

PloS one 20181226 12

<h4>Objective</h4>To develop a patient-centred outcome measure (PCOM) for use with children and young people accessing National Health Service (NHS) wheelchair and posture services. Identifying and addressing outcomes of most importance to young wheelchair users (≤ 18 years) will help services maximise the benefits achievable within available resources.<h4>Methods</h4>A mixed-methods approach was used, involving questionnaire surveys and qualitative interviews, and building on previous work iden ...[more]

PMID: 30586390

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Project description:BACKGROUND:In the past years, a mobile health (mHealth) app called the Dutch Talking Touch Screen Questionnaire (DTTSQ) was developed in The Netherlands. The aim of development was to enable Dutch physical therapy patients to autonomously complete a health-related questionnaire regardless of their level of literacy and digital skills. OBJECTIVE:The aim of this study was to evaluate the usability (defined as the effectiveness, efficiency, and satisfaction) of the prototype of the DTTSQ for Dutch physical therapy patients with diverse levels of experience in using mobile technology. METHODS:The qualitative Three-Step Test-Interview method, including both think-aloud and retrospective probing techniques, was used to gain insight into the usability of the DTTSQ. A total of 24 physical therapy patients were included. The interview data were analyzed using a thematic content analysis approach aimed at analyzing the accuracy and completeness with which participants completed the questionnaire (effectiveness), the time it took the participants to complete the questionnaire (efficiency), and the extent to which the participants were satisfied with the ease of use of the questionnaire (satisfaction). The problems encountered by the participants in this study were given a severity rating that was used to provide a rough estimate of the need for additional usability efforts. RESULTS:All participants within this study were very satisfied with the ease of use of the DTTSQ. Overall, 9 participants stated that the usability of the app exceeded their expectations. The group of 4 average-/high-experienced participants encountered only 1 problem in total, whereas the 11 little-experienced participants encountered an average of 2 problems per person and the 9 inexperienced participants an average of 3 problems per person. A total of 13 different kind of problems were found during this study. Of these problems, 4 need to be addressed before the DTTSQ will be released because they have the potential to negatively influence future usage of the tool. The other 9 problems were less likely to influence future usage of the tool substantially. CONCLUSIONS:The usability of the DTTSQ needs to be improved before it can be released. No problems were found with satisfaction or efficiency during the usability test. The effectiveness needs to be improved by (1) making it easier to navigate through screens without the possibility of accidentally skipping one, (2) enabling the possibility to insert an answer by tapping on the text underneath a photograph instead of just touching the photograph itself, and (3) making it easier to correct wrong answers. This study shows the importance of including less skilled participants in a usability study when striving for inclusive design and the importance of measuring not just satisfaction but also efficiency and effectiveness during such studies.

Project description:IntroductionEarly intervention (EI) endorses family-centred and participation-focused services, but there remain insufficient options for systematically enacting this service approach. The Young Children's Participation and Environment Measure electronic patient-reported outcome (YC-PEM e-PRO) is an evidence-based measure for caregivers that enables family-centred services in EI. The Parent-Reported Outcomes for Strengthening Partnership within the Early Intervention Care Team (PROSPECT) is a community-based pragmatic trial examining the effectiveness of implementing the YC-PEM e-PRO measure and decision support tool as an option for use within routine EI care, on service quality and child outcomes (aim 1). Following trial completion, we will characterise stakeholder perspectives of facilitators and barriers to its implementation across multiple EI programmes (aim 2).Methods and analysisThis study employs a hybrid type 1 effectiveness-implementation study design. For aim 1, we aim to enrol 223 caregivers of children with or at risk for developmental disabilities or delays aged 0-3 years old that have accessed EI services for three or more months from one EI programme in the Denver Metro catchment of Colorado. Participants will be invited to enrol for 12 months, beginning at the time of their child's annual evaluation of progress. Participants will be randomised using a cluster-randomised design at the EI service coordinator level. Both groups will complete baseline testing and follow-up assessment at 1, 6 and 12 months. A generalised linear mixed model will be fitted for each outcome of interest, with group, time and their interactions as primary fixed effects, and adjusting for child age and condition severity as secondary fixed effects. For aim 2, we will conduct focus groups with EI stakeholders (families in the intervention group, service coordinators and other service providers in the EI programme, and programme leadership) which will be analysed thematically to explain aim 1 results and identify supports and remaining barriers to its broader implementation in multiple EI programmes.Ethics and disseminationThis study has been approved by the institutional review boards at the University of Illinois at Chicago (2020-0555) and University of Colorado (20-2380). An active dissemination plan will ensure that findings have maximum reach for research and practice.Trial registration numberNCT04562038.

Project description:ImportanceClinician compassion is a vital element of health care quality. Currently, there appears to be no validated and feasible method for health care organizations to measure patient assessment of clinician compassion on a large scale.ObjectiveTo develop and validate a tool for measuring patient assessment of clinician compassion that can be used in conjunction with the Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) survey.Design, setting, and participantsThis prospective cohort study took place from June 1 to August 30, 2018, at a US academic health care system among a pilot cohort consisting of 3325 adult patients and a validation cohort consisting of 3483 adult patients, both of whom had an outpatient clinic visit and completed the CG-CAHPS survey.Main outcomes and measurementsAfter a comprehensive literature review, 12 candidate survey items were developed. Face and construct validity were performed. Candidate items were disseminated to patients in conjunction with the CG-CAHPS survey in a series of 2 studies: (1) exploratory factor analysis in one cohort to determine the factor structure and the most parsimonious set of items; and (2) validity testing in a second cohort using confirmatory factor analysis. Reliability was tested using Cronbach α. Convergent validity was tested with patient assessment of clinician communication and overall satisfaction questions from CG-CAHPS survey.ResultsOverall, 6493 patient responses were analyzed. The mean (SD) age was 60 (15) years, 4239 patients (65.3%) were women, and 5079 (78.2%) were white. Exploratory factor analyses identified a 5-item compassion measure to be the most parsimonious. Confirmatory factor analyses found good fit. The compassion measure demonstrated good internal consistency (α = 0.94) and convergent validity (clinician communication: ρ = 0.44; overall satisfaction: ρ = 0.52) but reflected a patient experience domain (compassionate care) distinct from what is currently captured in the CG-CAHPS survey.Conclusions and relevanceA simple 5-item tool to measure patient assessment of clinician compassion was developed and validated for use in conjunction with CG-CAHPS survey.

Project description:BackgroundMyasthenia gravis (MG) is a chronic autoimmune neuromuscular disease, characterised by fluctuating muscle weakness which makes it challenging to assess symptom severity. Mixed methods psychometrics (MMP), which combines evidence from qualitative research and modern psychometrics, is a versatile approach to the development of patient-centred outcome measures (PCOM) in the context of rare disease. Our objective was to develop the MG Symptom patient-reported outcome (PRO) to assess key aspects of MG severity from the patient perspective.MethodsWe used MMP to develop a novel PRO instrument in a multi-step process. An initial conceptual model for MG patient experience was developed and expanded based on preliminary literature review and two waves of concept elicitation interviews with people with MG (Step 1). Based on this, the novel PRO instrument, the MG Symptoms PRO, was drafted. The draft instrument was refined by combining qualitative and quantitative data collected in a Phase 2 clinical study (Step 2).ResultsFindings from the literature review and concept elicitation interviews (n = 96) indicated that patient experience in MG includes proximal muscle weakness symptoms related to several body parts, along with muscle weakness fatigability and general fatigue. Then, a set of 42 items across five scales (ocular-, bulbar-, and respiratory muscle weakness, physical fatigue, and muscle weakness fatigability) was developed. Qualitative evidence endorsed its relevance, clarity, and ease of completion; quantitative analysis with Rasch measurement theory methods demonstrated strong measurement properties, including good targeting and high reliability. Classical test theory analyses showed adequate reliability of the instrument and mild to moderate correlations with other widely used MG-specific outcome measures.ConclusionsThe MG Symptoms PRO has potential to be used both to measure treatment benefit in clinical trials and monitor symptom severity in clinical practice. Its component scales were purposefully designed to stand alone, enhancing interpretability of scores given the heterogeneity of MG, and enabling modular use. Compared with existing MG PROs, it contains more detailed assessments of muscle weakness and muscle weakness fatigability symptoms, which are of key importance to people with MG. The MMP approach used may serve as a case study for developing PCOMs across rare disease indications.

Project description:BackgroundShoulder pain is one of the most common musculoskeletal concerns in manual wheelchair users including among athletes. However, there is a paucity of research characterizing both shoulder pain and shoulder pathology in this population.ObjectiveTo characterize and compare the prevalence of current shoulder pain and ultrasound metrics of shoulder pathology between wheelchair athletes, nonathletic wheelchair users, and nonwheelchair users.DesignCross-sectional.SettingChicago-area adaptive sport teams/programs and musculoskeletal clinics.ParticipantsThirty-four wheelchair athletes, six nonathletic wheelchair users, and 12 nonwheelchair users.MethodsSelf-reported shoulder pain was assessed by questionnaire and Wheelchair User Shoulder Pain Index (WUSPI). Shoulder physiology and pathology were assessed by physical and ultrasound evaluation of both shoulders by a sports medicine physician.Main outcome measuresQuestionnaire outcomes: Prevalence of current shoulder pain, total WUSPI score. Physical examination outcomes: total Physical Examination of Shoulder Scale (PESS) score. Sonographic outcomes: Acromiohumeral distance (AHD) and presence of shoulder pathology.ResultsThe majority of wheelchair athletes (68%) and nonathletic wheelchair users (67%) experienced shoulder pain since using a manual wheelchair. Wheelchair basketball players had a mean WUPSI score of 17.2 (SD = 21.8), and athletes participating in handcycling, sled hockey, and quad rugby had mean scores of 4.91 (SD = 8.32), 7.76 (SD = 13.1), and 4.29 (SD = 7.75), respectively. Shoulder pathology was observed in 14 of 31 (45%) wheelchair athletes and 4 of 6 (67%) nonathletic wheelchair users (p = .41).ConclusionsAlthough wheelchair use is a risk factor for shoulder pain, participation in amateur wheelchair sports may not be associated with increased risk of shoulder pain. It is possible that overhead sports such as wheelchair basketball may define a unique high-risk group. Further study is needed to examine this relationship and to determine whether there are differences between specific wheelchair sports.

Project description:BackgroundWheelchairs for children with impaired mobility provide health, developmental and psychosocial benefits, however there is limited understanding of how mobility aids affect the health-related quality of life of children with impaired mobility. Preference-based health-related quality of life outcome measures are used to calculate quality-adjusted life years; an important concept in health economics. The aim of this research was to understand how young wheelchair users and their parents define health-related quality of life in relation to mobility impairment and wheelchair use.MethodsThe sampling frame was children with impaired mobility (≤18 years) who use a wheelchair and their parents. Data were collected through semi-structured face-to-face interviews conducted in participants' homes. Qualitative framework analysis was used to analyse the interview transcripts. An a priori thematic coding framework was developed. Emerging codes were grouped into categories, and refined into analytical themes. The data were used to build an understanding of how children with impaired mobility define health-related quality of life in relation to mobility impairment, and to assess the applicability of two standard measures of health-related quality of life.ResultsEleven children with impaired mobility and 24 parents were interviewed across 27 interviews. Participants defined mobility-related quality of life through three distinct but interrelated concepts: 1) participation and positive experiences; 2) self-worth and feeling fulfilled; 3) health and functioning. A good degree of consensus was found between child and parent responses, although there was some evidence to suggest a shift in perception of mobility-related quality of life with child age.ConclusionsYoung wheelchair users define health-related quality of life in a distinct way as a result of their mobility impairment and adaptation use. Generic, preference-based measures of health-related quality of life lack sensitivity in this population. Development of a mobility-related quality of life outcome measure for children is recommended.

Dataset Information

Development of the Wheelchair outcomes Assessment Tool for Children (WATCh): A patient-centred outcome measure for young wheelchair users.

Objective

Methods

Results

Publications

Development of the Wheelchair outcomes Assessment Tool for Children (WATCh): A patient-centred outcome measure for young wheelchair users.

Similar Datasets

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