Table 2.

Patients' and Family Members' Views on Practical Issues

Themes Identified in Patients' and Family Members' Responses
Could a family member serve as a respondent for the patient? Patient reluctant to impose on those who already had been burdened by assisting in care process Appropriate if patient was too ill Perspective of family member might differ from that of the patient Parents are appropriate reporters for pediatric patients; views were mixed on whether children should be invited to report
At what point would patients and family members be willing to report on their experiences? After a treatment plan had be established and implemented, the patient was stable, and the outlook was good After treatment had been completed
Would patients and family members complete questionnaires about their communication experiences repeatedly? Repeated reporting could be burdensome Repeated reporting could be acceptable, for instance at 6-month intervals, or tied to follow-up appointments
How many items would be acceptable? The number of items deemed acceptable ranged from 6 to 100 Fifty was the most common recommendation
How long would patients or family members be willing to spend to complete a questionnaire? The amount of time deemed acceptable was 5 minutes to 1 hour Fifteen to 20 minutes was most common recommendation
Preference for questionnaire construction Rating scale questions would be less burdensome. Opportunity to provide detailed comments or clarification is important.
What delivery mode would be preferred? Paper preferred by some; advantages included paper would stimulate thoughtful responses; paper would serve as a reminder Internet-based preferred by some; a disadvantage was that e-mail solicitations would be easy to ignore or forget; some (eight of 54) reported no Internet access; a few suggested providing questionnaire link on patient portal Telephone preferred by some; would encourage in-depth responses
Should questions focus on communication with individual clinicians, or with care teams? Experiences vary greatly across clinicians; important to allow reporting at the level of individual clinician, particularly if there was a problem with communication
Should the system be available at all times for patients to access at will, or should patient reports be actively solicited periodically ? Constantly available system most likely to be accessed if patient wanted to report a problem; but patient likely to ignore otherwise Active solicitations would serve as reminder; more likely to result in response