DEVELOPMENT OF THE SCHIZOPHRENIA CAREGIVER QUESTIONNAIRE- MODIFICATION OF THE ZARIT BURDEN INTERVIEW INFORMED BY QUALITATIVE INSIGHTS
Author(s)
Gater A*1;Rofail D2;Tolley C1;Marshall C1;Abetz-Webb L1;Zarit SH3, Galani Berardo C4 1Adelphi Values, Bollington, United Kingdom, 2Roche Products Ltd, Welwyn Garden City, United Kingdom, 3Pennsylvania State University, University Park, PA, USA, 4F. Hoffmann-La Roche LTD, Basel, Switzerland
OBJECTIVES: Understanding the impact of caring for a person with schizophrenia on caregivers’ lives and emotional and physical well-being is of increasing interest for healthcare decision-makers. The Zarit Burden Interview (ZBI) is an established measure of caregiver impact for Alzheimer’s disease. Face and content validity of the ZBI have not yet been established in schizophrenia and were explored in this study based on qualitative insights from caregivers of people with schizophrenia. METHODS: A targeted literature review and consideration of best practice guidelines for development of self-report questionnaires informed initial ZBI modifications. Face and content validity of the newly labelled Schizophrenia Caregiver Questionnaire (SCQ) were assessed via comprehensive semi-structured interviews with a diverse range of 19 US caregivers of people with schizophrenia. Interviews were initially open-ended and explored caregivers’ experience of caring for a person with schizophrenia (concept elicitation). Cognitive debriefing of the draft SCQ then assessed relevance and understanding. RESULTS: Initial review of the ZBI informed changes to item wording, recall period, and response scales to improve face validity. The qualitative literature review and concept elicitation interviews informed ten additional items assessing concepts important to caregivers, not included in the ZBI: tiredness, stress, disturbed sleep, sadness, medication administration issues, worries about future episodes, worsening symptoms, frustration, emotional highs and lows, and impact on work. Following cognitive debriefing interviews, five items were modified to improve relevance and understanding; otherwise, caregiver feedback supported the content validity and comprehensiveness of the resulting SCQ. CONCLUSIONS: SCQ demonstrated good face and content validity for the assessment of caregiver impact in schizophrenia and is a promising tool for communication of caregiver outcomes to healthcare decision makers. Tiredness, disturbed sleep and sadness are included in depression scales hence there may be overlap if depression is assessed). Further work determining final SCQ content/scoring and psychometric properties is ongoing.
Conference/Value in Health Info
2013-11, ISPOR Europe 2013, The Convention Centre Dublin
Value in Health, Vol. 16, No. 7 (November 2013)
Code
PRM14
Topic
Methodological & Statistical Research
Topic Subcategory
Confounding, Selection Bias Correction, Causal Inference, PRO & Related Methods
Disease
Mental Health