Development of the Huntington Disease Family Concerns and Strategies Survey from focus group data

Document Type


Peer Reviewed


Publication Date


NLM Title Abbreviation

J Nurs Meas

Journal/Book/Conference Title

Journal of nursing measurement

PubMed ID



Health concerns and management strategies among families of young and middle-age adults with Huntington's disease (HD) are unknown. This study developed and tested psychometric properties of the Huntington Disease Family Concerns and Strategies Survey (HDFCSS). Focus group data from 91 adult family members were used to develop content. Content analysis yielded four domains that were transferred into Personal, Person With HD, Community Health Care Services, and Strategies scales. Focus group data, expert validation, and cognitive interviews demonstrated survey content validity. Cronbach's alpha internal consistency coefficients for the scales were 0.83 or above. The measure can be used to generate reliable and valid data to identify adult family members' health-related concerns and management strategies for themselves and persons with HD.


Family, Huntington's Disease, Instrument Construction, Instrument Validation, Adult, Aged, Audiorecording, Canada, Coefficient Alpha, Conceptual Framework, Content Analysis, Content Validity, Female, Focus Groups, Funding Source, Human, Interviews, Item Analysis, Item-Total Correlations, Mail, Male, Middle Age, Parents, Purposive Sample, Questionnaires, Self Report, Siblings, Spouses, Summated Rating Scaling, United States, Validation Studies

Published Article/Book Citation

Journal of nursing measurement, 18:2 (2010) pp.83-99.

Recommended Citation

Journal of nursing measurement. 2010 Jun;18(2):83-99.

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