Abstract
Background: This study used focus groups to examine the content validity and feasibility of the Care Notebook among Hawaii residents.
Methods: Focus groups were held for Hawaii cancer survivors, caregivers, and cancer clinical trials professionals. The focus groups followed a standardized set of questions, and all participants were provided with the Care Notebook, a 24-item instrument, scored on an 11-point Likert scale, with an open-ended question (“How might we help you improve your health and life?”).
Results: A total of 20 patients, 4 caregivers, and 9 health professionals took part in the focus groups. Focus groups identified two primary themes: quality of life (QoL) concerns are important to cancer survivors; and most patients are comfortable with the idea of using a questionnaire to measure QoL. In terms of the Care Notebook specifically, the groups observed that items on the Care Notebook are relevant to Hawaii cancer survivors; and the “other comments” final question of the Care Notebook is very important and could be expanded to make the questionnaire responsive to the concerns of individuals. Participants also pointed out that there were a few areas where they found the wording was confusing.
Conclusion: Most cancer survivors feel comfortable with using a questionnaire to measure QoL concerns, which are important to them; and caregivers and heath professionals agree with these observations. This study gives credence to use of English version of the Care Notebook, as well as provides suggestions for ways it could be improved.
