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Adding a subjective dimension to an ICF-based disability measure for people with multiple sclerosis: development and use of a measure for perception of disabilities
Abstract
OBJECTIVE: The subjective dimension of disability, the perception of disability, is a dimension missing from the International Classification of Functioning, Disability and Health (ICF), and from health-related quality of life (HRQOL) instruments. However, it is a highly relevant dimension for clinical practice as perceived disability may identify care needs. We therefore developed a measure for this subjective dimension of disability in multiple sclerosis (MS) and examined the contribution of this dimension to QOL. METHOD: A measure named the Multiple Sclerosis Impact Profile-Disability Perception (MSIP-DP) was developed to reflect a person's perception of disabilities reported using the original MSIP-disability (MSIP-D) items. MS patients (n=530) completed both MSIP sections, the medical outcome study short form questionnaire (SF-36), the World Health Organisation Quality Of Life-BREF (WHOQOL-BREF) and questions concerning disease severity. The contribution of disability perception (DP) to QOL in MS was estimated using hierarchical multiple regression analyses after controlling for MS severity. RESULTS: Confirmative factor analysis confirmed the hypothesised disability perception domains that correspond with the related disability domains in the MSIP. DP scales yielded sufficient reliability. DP explained a unique and substantial part of the variance in QOL, particularly the perception of impairments in mental functions. DISCUSSION: Results indicated that the subjective dimension of functioning and health operationalised in the MSIP-DP is a relevant concept in explaining QOL in MS. In clinical practice psychological interventions addressing a patient's perception of disability, particularly of impairments in mental functioning, may contribute to QOL.
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Treatment effects concerning QoL in MS are best evaluated using the WHOQOL-BREF, although there is not a norm group specific for MS patients.
“Treatment effects concerning QoL in MS are best evaluated using the WHOQOL-BREF, although there is not a norm group specific for MS patients.31”
From EMDR treatment for anxiety in MS patients: A pilot study (2020) · cites this paper as [31]
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Cited by
Sorted by citations
Černiauskaitė, M., Quintas, R. M. M., Boldt, C., Raggi, A., Cieza, A., Bickenbach, J. E., & Leonardi, M. (2010) · Disability and Rehabilitation · doi:10.3109/09638288.2010.529235 · Cited by 287
“A total of 45 papers [265–308] were on the development of other ICF-based tools or on the validation of existing ICF-based tools, such as the WHO-DAS II.”
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“ICF-CY has been used as a framework to compare HrQoL instruments in earlier studies [12-15] and has proved to be highly useful for analysis of content across measures.”
MethodDisability and health behavior change
Ravesloot, C., Ruggiero, C. N., Ipsen, C., Traci, M. A., Seekins, T. W., Boehm, T., Ware-Backs, D., & Rigles, B. (2010) · Disability and health journal · doi:10.1016/j.dhjo.2010.05.006 · Cited by 36
“[54] Wynia K, Middel B, De Ruiter H, et al.”
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“, ankylosing spondylitis and multiple sclerosis) based on the ICF version for adults [20,21].”
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Wynia, K., Annema, C., Nissen, H., Keyser, J. D., & Middel, B. (2010) · BMC Health Services Research · doi:10.1186/1472-6963-10-142 · Cited by 26
Self-citationWynia, K., van Wijlen, A., Middel, B. J., Reijneveld, S. A., & Meilof, J. (2011) · Multiple Sclerosis Journal · doi:10.1177/1352458511423935 · Cited by 23
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“Although there are academic debates regarding the ICF model (Cieza et al. 2009; Rauch et al. 2009; Wynia et al. 2009), it is likely that parents of children with disabilities perceive, define and contextualize disability in multiple ways.”
BackgroundEMDR treatment for anxiety in MS patients: A pilot study
Wallis, O. C., & de Vries, J. (2020) · Multiple Sclerosis Journal - Experimental, Translational and Clinical · doi:10.1177/2055217320974388 · Cited by 16
“Treatment effects concerning QoL in MS are best evaluated using the WHOQOLBREF, although there is not a norm group specific for MS patients.(31)”
MethodFrempong-Ainguah, F., & Hill, A. G. (2014) · Revue Quetelet + Quetelet journal/Revue Quetelet + Quetelet Journal · doi:10.14428/rqj2014.02.02.01 · Cited by 16
“This reinforces the multi-dimensional nature of health (Macran, Clarke, Joshi, 1996; Wynia et al., 2009).”
BackgroundICF-orientierte klinische Dokumentation und Evaluation in der Neuro-Rehabilitation – Teil 1
Wendel, C., & zu Schweinsberg, E. S. (2012) · Zeitschrift für Neuropsychologie · doi:10.1024/1016-264x/a000067 · Cited by 7
Yaghmaian, R. A., Smedema, S. M., & Thompson, K. L. (2017) · Rehabilitation Research Policy and Education · doi:10.1891/2168-6653.31.2.89 · Cited by 4
Alali, D., El‐Wahsh, S., & Bogaardt, H. (2020) · Springer eBooks · doi:10.1007/978-3-030-28852-5_14 · Cited by 2
Objective quality of life and level of life satisfaction in people suffering from multiple sclerosis
Tasiemski, T., Koper, M., & Miler, M. (2011) · Polish Journal of Physiotherapy · doi:10.5604/16420136.970676 · Cited by 1
Wynia, K., Roodbol, P. F., & Middel, B. J. (2009) · Psychologie & gezondheid · doi:10.1007/bf03080390 · Cited by 1
Self-citationWynia, K., & Middel, B. J. (2008) · Neuropraxis · doi:10.1007/bf03077145
Self-citationMiddel, B. J. (2011) · Nederlands Tijdschrift voor Evidence Based Practice · doi:10.1007/s12468-011-0025-9
Self-citationQualidade de vida e saúde mental em portadores de esclerose múltipla
Braga, M. N. F. (2011) · Portuguese National Funding Agency for Science, Research and Technology (RCAAP Project by FCT)
Metadata
- Authors
- Wynia, K., Middel, B., de Ruiter, H., van Dijk, J. P., Lok, W. S., de Keyser, J. H. A., & Reijneveld, S. A.
- Affiliations
- University Medical Center Groningen (NL)
- Corresponding author
- Wynia, Klaske
- Venue
- Disability and Rehabilitation
- Publisher
- Informa UK Limited
- Published
- 2009-01
- Volume
- 31
- Issue
- 12
- Pages
- 1008-1017
- ISSN
- 0963-8288 (ISSN-L)
- 1464-5165
- OpenAlex
- W1998880417
- Cited by
- 20
- References
- 24
- Citations by year
- 2020: 2 · 2017: 1 · 2014: 1 · 2013: 2 · 2012: 3
- FWCI
- 3.05
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Disability and Rehabilitation (publishedVersion)
- PubMed (publishedVersion)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (publishedVersion)
- VUBIR (Vrije Universiteit Brussel) (submittedVersion)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (submittedVersion)
- Funders
- Ministry of Science, ICT and Future Planning
- Topics
- Health Sciences › Medicine › Clinical Neurology › Multiple Sclerosis Research Studies
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Medical Practices and Rehabilitation
- Keywords
- multiple sclerosis, perceptions of disability, International Classification of Functioning, Disability and Health, health-related quality of life, disease severity, psychological intervention
- MeSH terms
- Adult, Aged, Aged, 80 and over, Disability Evaluation, Female, Humans, Male, Middle Aged, Multiple Sclerosis, Quality of Life, Surveys and Questionnaires
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