Preference based assessment of the quality of life of disabled persons

Persson, Jan; Andrich, Renzo; Beekum, Taeke van; Brodin, Hå̊kan; Lorentsen, Øivind; Wessels, Roelof; Witte, Luc de

doi:10.3233/tad-2002-14307

Cited by 9 publications

(2 citation statements)

References 1 publication

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“…Neilson et al [72] suggest supplementing PBMs with additional questions relating to functional activities which have a large impact on overall quality of life, such as 'sitting' for AMT users. For instance, Persson et al [73] added complimentary mobility and social relationship items to the EQ-5D-3 L to increase sensitivity in disabled populations. However, this approach assumes that supplemental questions can be mapped on to the health state preference values of existing measures without impacting accuracy.…”

Section: Methodological Implicationsmentioning

confidence: 99%

Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness

2020

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Introduction: Mobility impairment is the leading cause of disability in the UK. Individuals with congenital mobility impairments have unique experiences of health, quality of life and adaptation. Preference-based outcomes measures are often used to help inform decisions about healthcare funding and prioritisation, however the applicability and accuracy of these measures in the context of congenital mobility impairment is unclear. Inaccurate outcome measures could potentially affect the care provided to these patient groups. The aim of this systematic review was to examine the performance of preference-based outcome measures for the measurement of utility values in various forms of congenital mobility impairment. Methods: Ten databases were searched, including Science Direct, CINAHL and PubMed. Screening of reference lists and hand-searching were also undertaken. Descriptive and narrative syntheses were conducted to combine and analyse the various findings. Results were grouped by condition. Outcome measure performance indicators were adapted from COSMIN guidance and were grouped into three broad categories: validity, responsiveness and reliability. Screening, data extraction and quality appraisal were carried out by two independent reviewers. Results: A total of 31 studies were considered eligible for inclusion in the systematic review. The vast majority of studies related to either cerebral palsy, spina bifida or childhood hydrocephalus. Other relevant conditions included muscular dystrophy, spinal muscular atrophy and congenital clubfoot. The most commonly used preference-based outcome measure was the HUI3. Reporting of performance properties predominantly centred around construct validity, through known group analyses and assessment of convergent validity between comparable measures and different types of respondents. A small number of studies assessed responsiveness, but assessment of reliability was not reported. Increased clinical severity appears to be associated with decreased utility outcomes in congenital mobility impairment, particularly in terms of gross motor function in cerebral palsy and lesion level in spina bifida. However, preference-based measures exhibit limited correlation with various other condition-specific and clinically relevant outcome measures.(Continued on next page) Conclusion: Preference-based measures exhibit important issues and discrepancies relating to validity and responsiveness in the context of congenital mobility impairment, thus care must be taken when utilising these measures in conditions associated with congenital mobility impairments.

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Section: Methodological Implicationsmentioning

confidence: 99%

Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness

2020

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“…Cost-effective analysis was supported by the Problems Impact Rating Scale (PIRS), a preferred status outcome measure, suitable for people with long-term disabilities. Users rate on a thermometer-like scale how much problems interfere with their life (Persson et al 2002) and, although simple to use, it may be difficult to distinguish between the impact of technology and other factors.…”

Section: Resource Managementmentioning

confidence: 99%

Evaluating the Impact of Mobility-Related Assistive Technology on the Lives of Disabled People: A Review of Outcome Measures

Harris¹,

Pinnington²,

Ward³

2005

British Journal of Occupational Therapy

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Sixteen outcome measures that could be used within the field of mobility assistive technology were reviewed. The aim was to assess how these tools measured activity and participation in relation to mobility. Each measure considered some useful aspect of participation, but none took sufficient account of the needs of those with mobility impairments or could evaluate adequately the impact of different technologies. To support client-centred and evidence-based practice, an outcome measure that evaluates the impact of mobility assistive technology on activity and participation is required.

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