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

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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: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.

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