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A brief psychometric and clinimetric evaluation of self-report burden and mental health measures completed by care partners of people with Parkinson’s-related dementia

Published online by Cambridge University Press:  03 August 2020

Sabina Vatter Open the ORCID record for Sabina Vatter [Opens in a new window] ,
Kathryn R. McDonald ,
Emma Stanmore ,
Sheree A. McCormick ,
Linda Clare  and
Iracema Leroi Open the ORCID record for Iracema Leroi [Opens in a new window]
Sabina Vatter
Affiliation:
Division of Neuroscience and Experimental Psychology, School of Biological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK
Kathryn R. McDonald
Affiliation:
Division of Neuroscience and Experimental Psychology, School of Biological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK
Emma Stanmore
Affiliation:
Division of Nursing, Midwifery & Social Work, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Sciences Centre, Manchester, UK
Sheree A. McCormick
Affiliation:
Division of Neuroscience and Experimental Psychology, School of Biological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK
Linda Clare
Affiliation:
The Centre for Research in Ageing and Cognitive Health (REACH), University of Exeter Medical School, Exeter, UK
Iracema Leroi*
Affiliation:
Global Brain Health Institute, School of Medicine, Trinity College Dublin, Dublin, Ireland
*
Correspondence should be addressed to: Prof. Iracema Leroi, Global Brain Health Institute, Trinity College Institute of Neuroscience, Trinity College Dublin, Lloyd Building, Dublin 2, Ireland. Phone: +353 1896 8546. Email: [email protected].
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Abstract

This report describes the evaluation of the psychometric and clinimetric properties of nine self-report measures completed by informal care partners of individuals with mild cognitive impairment or dementia in Parkinson’s disease and dementia with Lewy bodies. One hundred thirty-six care partners completed measures on relationship satisfaction, burden, stress, mood, resilience, health, quality of life, and feelings related to care provision. Psychometric properties, such as internal consistency, convergent validity, floor and ceiling effects, completion rate and data missingness, as well as clinimetric properties, such as time to administer, ease of scoring, readability and availability of the scales, were examined. Additionally, the design of the measure development studies was assessed with the 2018 COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) Risk of Bias checklist. Participants were mostly married women (>85%) with a mean age of 69.4 years. The methodological quality of the design of all measure development studies was “inadequate.” Five widely applied measures (Zarit Burden Interview, Hospital Anxiety and Depression Scale, Short Form 12 Health Survey, Relatives’ Stress Scale, and EuroQoL-5D) and two less researched instruments (Brief Resilience Scale and Relationship Satisfaction Scale) had high internal consistency and completion rates, moderate to strong convergent validity, low missingness and floor effects, and excellent clinical utility ratings. Two scales (Dyadic Relationship Scale and Family Caregiving Role) received poor psychometric ratings, and their usage among informal care partners is not recommended. In conclusion, well-validated and widely used measures received strong psychometric and clinimetric ratings. Future studies are required to determine the most reliable, valid and robust caregiver-reported measures.

Keywords

psychometricsclinimetricsdementia caregivingmeasurementreliability
Type
Brief Report
Information
International Psychogeriatrics , Volume 32 , Issue 7: Issue Theme: Sleep and Sleep Disorders in Older Adults , July 2020 , pp. 875 - 880
Copyright
© International Psychogeriatric Association 2020

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References

Bot, S.D., Terwee, C.B., van der Windt, D.A., Bouter, L., Dekker, J. and de Vet, H.C.W. (2004). Clinimetric evaluation of shoulder disability questionnaires: a systematic review of the literature. Annals of the Rheumatic Diseases, 63(4), 335–341. https://doi.org/10.1136/ard.2003.007724.CrossRefGoogle ScholarPubMed
Flesch, R. (1948). A new readability yardstick. Journal of Applied Psychology, 32(3), 221–233. https://doi.org/10.1037/h0057532.CrossRefGoogle ScholarPubMed
Frost, M.H., Reeve, B.B., Liepa, A.M., Stauffer, J.W., Hays, R.D. and Mayo/FDA Patient-Reported Outcomes Consensus Meeting Group. (2007). What is sufficient evidence for the reliability and validity of patient-reported outcome measures? Value in Health, 10(Suppl 2), S94–S105. https://doi.org/10.1111/j.1524-4733.2007.00272.x.CrossRefGoogle ScholarPubMed
Hely, M.A., Reid, W.G.J., Adena, M.A., Halliday, G.M. and Morris, J.G. (2008). The Sydney multicenter study of Parkinson’s disease: The inevitability of dementia at 20 years. Movement Disorders, 23(6), 837–844. https://doi.org/10.1002/mds.21956.CrossRefGoogle ScholarPubMed
Leroi, I., et al. (2019). Parkinson’s-adapted cognitive stimulation therapy: a pilot randomized controlled clinical trial. Therapeutic Advances in Neurological Disorders, 12, 1756286419852217. https://doi.org/10.1177/1756286419852217.CrossRefGoogle ScholarPubMed
Mokkink, L.B., et al. (2018). COSMIN Risk of Bias checklist for systematic reviews of patient-reported outcome measures. Quality of Life Research, 27(5), 1171–1179. https://doi.org/10.1007/s11136-017-1765-4.CrossRefGoogle ScholarPubMed
Mosley, P.E., Moodie, R. and Dissanayaka, N. (2017). Caregiver burden in Parkinson disease: a critical review of recent literature. Journal of Geriatric Psychiatry and Neurology, 30(5), 235–252. https://doi.org/10.1177/0891988717720302.CrossRefGoogle ScholarPubMed
Page, T.E., et al. (2017). Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review. BMJ Open, 7(3), e013611. https://doi.org/10.1136/bmjopen-2016-013611.CrossRefGoogle ScholarPubMed
Scholten, E.W.M., Hillebregt, C.F., Ketelaar, M., Visser-Meily, J.M.A. and Post, M.W.M. (2019). Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation: a systematic review. Disability and Rehabilitation, https://doi.org/10.1080/09638288.2019.1641847.CrossRefGoogle ScholarPubMed
Vatter, S., Stanmore, E., Clare, L., McDonald, K.R., McCormick, S. and Leroi, I. (2020). Care burden and mental ill health in spouses of people with Parkinson disease dementia and Lewy body dementia. Journal of Geriatric Psychiatry and Neurology, 33(1), 3–14. https://doi.org/10.1177/0891988719853043.CrossRefGoogle ScholarPubMed
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