As the PROMIS project is committed to having both researcher and patient input in
the development of item banks, both focus groups and cognitive interviews were included
in the QIR process. Focus group interviews can help the researcher discover the
vocabulary and the thinking patterns of the target group to inform the development
of questionnaire items. More importantly for PROMIS, focus groups can help to identify
important gaps in coverage of the current items and domain definitions. Although
PROMIS has targeted domains extensively studied in the clinical literature, it was
considered important to solicit feedback from potential respondents about the domains
in question to make sure we were addressing topics that reflect how potential respondents
experience the world. Therefore, the primary aim of the focus groups was to confirm
the domain definitions and identify common language related to the domain. A secondary
goal was to identify important measurement areas that are not currently covered
by PROMIS item banks for consideration for future banks.
Because we are designing instruments to measure domains that cross multiple illnesses,
ages, cultures, and lifestyles, we did not believe it was feasible to perform focus
groups matched on each of those variables. Covering all important chronic illnesses
alone would require hundreds of focus groups. For this reason, we adopted the strategy
of selecting a sample of patients with and without chronic illness who had experienced
a range of severity or limitation in the domain in question. A variety of ages and
cultures were represented. As a group, we asked them to reflect on the various ways
that their health affected their experience in a given domain.
Participants were recruited from a variety of settings including general medical
clinics, arthritis registries, rehabilitation clinics, and outpatient psychiatric
clinics (see Table 5, DeWalt et al ,2007). Two to 4 focus groups were conducted
for each domain, with the exception of Emotional Distress for which additional groups
were conducted due to the number of subdomains (eg, Anger, Anxiety, Depression,
Alcohol Abuse). After each focus group, PROMIS investigators conducted content analysis
based on recall, notes taken by the cofacilitator, and transcripts from the session
recordings. Specifically, we identified key words, phrases, and quotes regarding
symptoms; additional emergent themes in each of the domains; and important issues
not addressed by the initial 5 selected domains. Themes included in the final analysis
were raised by more than 1 participant in a single group, and, ideally, by participants
in more than 1 group. Overall, the focus groups confirmed the direction of the PROMIS
domain definitions, but added important ideas for development into new item banks.
The text above is an excerpt from the DeWalt et al, 2007 Medical Care manuscript.
For a full summary of the process please reference the following manuscript: DeWalt,
D.A., Rothrock, N., Yount S., Stone, A., on behalf of the PROMIS Cooperative Group.
of Item Candidates – The PROMIS Qualitative Item Review. Med Care
2007; 45: S12-S21.