Literature DB >> 16820417

Proxy measurements in multiple sclerosis: agreement between patients and their partners on the impact of multiple sclerosis in daily life.

F A H van der Linden1, J J Kragt, J C Hobart, M Klein, A J Thompson, H M van der Ploeg, C H Polman, B M J Uitdehaag.   

Abstract

BACKGROUND: The use of self-report measurements in clinical settings has increased. The underlying assumption for self-report measurements is that the patient understands the questions fully and is able to give a reliable assessment of his or her own health status. This might be problematic in patients with limitations that interfere with reliable self-assessment such as cognitive impairment or serious mood disturbances, as may be the case in multiple sclerosis. In these situations proxies may provide valuable information, provided we can be certain that proxies and patients give consistent ratings.
OBJECTIVE: To examine whether patients with multiple sclerosis and their partners agree on the impact of multiple sclerosis on the daily life of the patient by using the Multiple Sclerosis Impact Scale (MSIS-29).
METHODS: 59 patients with multiple sclerosis and their partners completed the MSIS-29. Agreement was examined, comprehensively at scale score levels and item functioning, using both traditional and less conventional psychometric methods (Rasch analysis).
RESULTS: Agreement between patients and partners was good for the physical scale, and slightly less but still adequate for the psychological scale. Mean directional differences did not show considerable systematic bias between patients and proxies. Intraclass correlation coefficients (ICCs) satisfied the requirements for agreement, but were higher for the physical scale (0.81) than for the psychological scale (0.72). These findings were supported by Rasch analyses.
CONCLUSION: In this sample, albeit small, partners provided accurate estimates of the impact of multiple sclerosis. This supports the value of self-rating scales and indicates that partners might be useful sources of information when assessing the impact of multiple sclerosis on the daily life of patients.

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Year:  2006        PMID: 16820417      PMCID: PMC2077548          DOI: 10.1136/jnnp.2006.090795

Source DB:  PubMed          Journal:  J Neurol Neurosurg Psychiatry        ISSN: 0022-3050            Impact factor:   10.154


  33 in total

1.  Proxy reliability: health-related quality of life (HRQoL) measures for people with disability.

Authors:  E M Andresen; V J Vahle; D Lollar
Journal:  Qual Life Res       Date:  2001       Impact factor: 4.147

Review 2.  Assessing health status and quality-of-life instruments: attributes and review criteria.

Authors:  Neil Aaronson; Jordi Alonso; Audrey Burnam; Kathleen N Lohr; Donald L Patrick; Edward Perrin; Ruth E Stein
Journal:  Qual Life Res       Date:  2002-05       Impact factor: 4.147

Review 3.  Intraclass correlations: uses in assessing rater reliability.

Authors:  P E Shrout; J L Fleiss
Journal:  Psychol Bull       Date:  1979-03       Impact factor: 17.737

4.  The brief repeatable battery of neuropsychological tests: normative values allow application in multiple sclerosis clinical practice.

Authors:  J B Boringa; R H Lazeron; I E Reuling; H J Adèr; L Pfennings; J Lindeboom; L M de Sonneville; N F Kalkers; C H Polman
Journal:  Mult Scler       Date:  2001-08       Impact factor: 6.312

5.  The use of proxy respondents in studies of older adults: lessons, challenges, and opportunities.

Authors:  P J Neumann; S S Araki; E M Gutterman
Journal:  J Am Geriatr Soc       Date:  2000-12       Impact factor: 5.562

6.  Agreement between patients' and proxies' reports of quality of life in Alzheimer's disease.

Authors:  J L Novella; C Jochum; D Jolly; I Morrone; J Ankri; F Bureau; F Blanchard
Journal:  Qual Life Res       Date:  2001       Impact factor: 4.147

7.  Cognitive impairment in probable multiple sclerosis.

Authors:  A Achiron; Y Barak
Journal:  J Neurol Neurosurg Psychiatry       Date:  2003-04       Impact factor: 10.154

8.  Anxiety and depression influence the relation between disability status and quality of life in multiple sclerosis.

Authors:  A C J W Janssens; P A van Doorn; J B de Boer; N F Kalkers; F G A van der Meche; J Passchier; R Q Hintzen
Journal:  Mult Scler       Date:  2003-08       Impact factor: 6.312

Review 9.  The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease.

Authors:  Kommer C A Sneeuw; Mirjam A G Sprangers; Neil K Aaronson
Journal:  J Clin Epidemiol       Date:  2002-11       Impact factor: 6.437

10.  Multiple Sclerosis Impact Scale (MSIS-29): reliability and validity in hospital based samples.

Authors:  A Riazi; J C Hobart; D L Lamping; R Fitzpatrick; A J Thompson
Journal:  J Neurol Neurosurg Psychiatry       Date:  2002-12       Impact factor: 10.154

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  9 in total

1.  Screening for major depressive disorder in adults with glioma using the PHQ-9: a comparison of patient versus proxy reports.

Authors:  Alasdair Grant Rooney; Shanne McNamara; Mairi Mackinnon; Mary Fraser; Roy Rampling; Alan Carson; Robin Grant
Journal:  J Neurooncol       Date:  2013-02-24       Impact factor: 4.130

2.  The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophy.

Authors:  Yoonjeong Lim; Craig Velozo; Roxanna M Bendixen
Journal:  Qual Life Res       Date:  2014-02-25       Impact factor: 4.147

Review 3.  [Coping with multiple sclerosis in partnerships: a systematic review of the literature].

Authors:  A-K Busch; R Spirig; W Schnepp
Journal:  Nervenarzt       Date:  2014-06       Impact factor: 1.214

4.  Agreement of patient and physician ratings on mobility and self-care in neurological diseases.

Authors:  Erik Farin
Journal:  Qual Life Res       Date:  2009-08-04       Impact factor: 4.147

5.  HRQoL in Barth Syndrome: Agreement between Child Self-reports and Parent Proxy-reports and Its Relationship to Parental HRQoL.

Authors:  Yoonjeong Lim; Consuelo M Kreider; Mary Alvarez; Roxanna M Bendixen
Journal:  J Hum Clin Genet       Date:  2019-06-13

6.  Rasch analysis of the Multiple Sclerosis Impact Scale MSIS-29.

Authors:  Melina Ramp; Fary Khan; Rose Anne Misajon; Julie F Pallant
Journal:  Health Qual Life Outcomes       Date:  2009-06-22       Impact factor: 3.186

7.  The size of the treatment effect: do patients and proxies agree?

Authors:  Femke A H van der Linden; Jolijn J Kragt; Jeremy C Hobart; Martin Klein; Alan J Thompson; Henk M van der Ploeg; Chris H Polman; Bernard M J Uitdehaag
Journal:  BMC Neurol       Date:  2009-03-25       Impact factor: 2.474

8.  Longitudinal proxy measurements in multiple sclerosis: patient-proxy agreement on the impact of MS on daily life over a period of two years.

Authors:  Femke A H van der Linden; Jolijn J Kragt; Margarethe van Bon; Martin Klein; Alan J Thompson; Henk M van der Ploeg; Chris H Polman; Bernard M J Uitdehaag
Journal:  BMC Neurol       Date:  2008-02-28       Impact factor: 2.474

9.  Measuring the impact of multiple sclerosis: Enhancing the measurement performance of the Multiple Sclerosis Impact Scale (MSIS-29) using Rasch Measurement Theory (RMT).

Authors:  Sophie Cleanthous; Stefan Cano; Elizabeth Kinter; Patrick Marquis; Jennifer Petrillo; Xiaojun You; Craig Wakeford; Guido Sabatella
Journal:  Mult Scler J Exp Transl Clin       Date:  2017-08-15
  9 in total

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