Reliability, validity and relevance of needs assessment instruments for informal dementia caregivers : a psychometric systematic review protocol

Kipfer, Stephanie (School of Health Sciences, HES-SO Fribourg, Switzerland; Bureau d’Echange des Savoirs pour des pratiques exemplaires de soins (BEST): a Joanna Briggs Institute Centre of Excellence, Lausanne, Switzerland) ; Pihet, Sandrine (School of Health Sciences, HES-SO Fribourg, Switzerland)

Objective:The objective of this review is to identify reliable and/or valid needs assessment instruments for informaldementia caregivers which are relevant for clinical practice, research and informal caregivers.Introduction:Informal dementia caregivers report important unmet needs at all stages of the disease. In addition,they often indicate that health care providers insufficiently attend and adapt to their multiple needs. A systematicand patient-centered assessment is needed to address this lack of knowledge and understanding. However, existingquantitative needs assessment questionnaires are limited in terms of psychometric testing. Qualitative measures aretime intensive and difficult to conduct on a large scale, with growing economic pressure. Information about themethodological quality and the characteristics of needs assessment instruments are crucial for clinicians andresearcher to make informed decisions about the most reliable and valid tool for their specific purpose.Inclusion criteria:This review considered studies on multidimensional needs assessment instruments for assessingthe needs of informal dementia caregivers, living at home. Psychometric studies or other type of studies with sufficientdata to evaluate methodological quality were included if they considered at least one outcome for reliability or validity.Methods:Studies in English, French or German and published until February 2019 were searched in four databases:Embase, MEDLINE, CINAHL and PsycINFO. After screening the titles, abstracts or full-texts for eligibility, theprovisional included studies were assessed for methodological quality with a standardized tool for systematicreviews of measurement properties. After data extraction using a standardized tool, the quality of the measurementproperties was rated and compared using predefined quality criteria.Results:Eighteen articles covering 14 different needs assessment instruments were included in the review. Elevenpublications focused on the development or the evaluation of an instrument. In addition, a development report, amanual and five studies, not aimed primarily at validation but containing sufficient information about the developmentor the evaluation of the used instruments, were included. The systematic evaluation of the instruments revealed thathalf of them had excellent content validity. In contrast, structural validity was rarely examined, and mostly with aninsufficient sample size or a questionable analysis. None of the instruments had an optimally tested and good internalconsistency. Regarding reliability, test-retest agreement was rarely tested and inter-rater agreement was evaluatedusingcontroversialprocedures.Comparingthedifferentinstrumentsreviewed,the‘‘Partneringforbetterhealth – livingwith chronic illness: dementia’’ had the best psychometric evidence, and the ‘‘Questionnaire of consultation expecta-tions’’ was also partly supported, while most other instruments presently had limited psychometric soundness.Conclusions:Despite the good evidence for some psychometric properties, further developments in the field ofneeds assessment for informal dementia caregivers are needed, particularly regarding structural and constructvalidity, as well as test-retest reliability and sensitivity to change. To enhance conceptual clarity, the development ofan underlying theoretical model of needs should be prioritized.

Article Type:
Recherche appliquée et développement Santé HEDS-FR
38 p.
Published in:
JBI Database of Systematic Reviews and Implementation Reports
Numeration (vol. no.):
2019, vol. 17, no. 0, p. 1-38
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 Record created 2020-07-13, last modified 2020-07-13

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