The focus groups’ purpose was to: 1) identify ways that Sickle Cell Disease (SCD) can positively or negatively influence the lives of adults, 2) allow participants to prioritize potential health-related quality of life (HRQOL) derived from the literature review, and 3) provide input on the preferred modality (e.g., computer, paper and pencil, interactive voice response) for the administration of the ASCQ-Me questions.
Focus group participants were adults with SCD representing a diversity of demographics and geographic locations. Participants were recruited using flyers describing the study that were distributed to sites providing clinical care for adults with SCD; through member organizations of the Sickle Cell Disease Association of America (SCDAA); and through other SCD community organizations.
The focus groups were facilitated discussions led by moderators (nurses, psychologists and social workers) who had experience working with individuals with SCD. The groups were homogeneous with regard to gender and moderators were matched to the gender of the group. The purpose of gender matching was to facilitate candid discussion about gender-related influences of SCD on a person’s life. The majority of the focus group protocol involved structured discussion to elicit critical incidents, i.e., the effect of SCD on the participants' lives. After each focus group generated its own critical incidents, participants were asked to rate the importance of aspects of health-related quality of life identified by the consumer working groups and the literature review. To do this, participants were asked to review the list of health-related quality of life aspects and vote on which aspects were most important . Participants were given seven votes and they were allowed to give any aspect more than one vote. Participants were also asked to vote on their preferences for the modality with which a health-related quality of life measure might be administered (e.g., paper and pencil; computer; telephone).
Characteristics of participants. Eighty-four adults participated in 11 focus group interviews (39 male in five groups, 45 females in six groups). Adults with SCD ranged from 18 to 64 years of age (median 35 – 44 years) and represented the range of SCD genotypes. Consistent with the population of individuals affected with SCD in the U.S., 89% of focus group participants were Black or African American. Focus groups were conducted in urban, suburban and rural sites in Arkansas, California, Florida, Maryland, Massachusetts and New York. Focus groups were hosted by community-based organizations, hospitals and a university.
of SCD life effects. As expected, pain received the most votes, followed by fatigue/tiredness, work and physical activities. Relationships with family and friends were voted on relatively infrequently, as were volunteer work issues – each of these categories received less than two percent of votes. Sexuality issues also received only two percent of votes even though the topic generated quite a bit of discussion in the groups. The pattern of votes cast by men and women was similar across domains, with the exception that women chose issues of tiredness and fatigue significantly more often than men (12% versus four percent, chi square (1df) = 9.98, p = .002) and men chose emotional issues (8% versus four percent, chi square (1df) = 5.00, p = .025) significantly more often than women.
methodology. Participants responded to a series of questions about previous survey experiences and preferences for how a measure of health-related quality of life (HRQOL) for adults with SCD might be administered. The most frequently preferred mode of administration was a computer with a keyboard (34%), followed by paper-and-pencil administration (28%), and a telephone interview conducted by a live person (23%). Participants were in favor of the development of the HRQOL measurement system, but very much not in favor of giving out personal information if it is not going to be listened too, or not getting feedback about the results of the project.
Qualitative Notes from Groups
After logistics and ground rules were described by the moderator, and group members introduced themselves, the participants were asked the question: When I say the words “sickle cell” what do you think of? The overwhelming response was “pain,” followed by a variety of words that focused on the disease and its treatments – “blood disease,” “hospital,” “transfusion” and “medication.” Other descriptors focused on the impact of the SCD – “burden,” “torture,” “hardship,” “discomfort” and “limitations.” A few group members commented on potential positive impacts – “balance your life” and “self-aware.” There was very little need to probe for critical incidents, as the focus group members were very forthcoming with regard to positive and negative effects that SCD had had on their lives.
Following the critical incident portion of the focus group, participants were asked: How would your life be different if you didn’t have sickle cell? Both men and women commented on limitations they would not have if they did not have SCD. This included the ability to travel more; participate in sports; pursue a different educational or career path; and to live wherever they would like, without regard to the weather or being away from family. Men often commented on their limitation with regard to employment in the military or law enforcement. Some participants focused on not having to have contact with the health care system if they did not have SCD. Not all participants felt their lives would be different in any way.
In response to What bothers you most about having sickle cell? Participants focused on its unpredictable course, costs of treatments and medications, and negative judgments in relation to their need for pain medications. Some commented on disappointing their families and friends due to illness episodes, missing out on events and holidays, and on their children seeing them ill or having to help them when they were ill.
Participants were asked If you did not have sickle cell, what would you miss? Participants had many responses to this question, including positive traits they might not have developed – patience, persistence, humility, compassion and empathy. They commented on missing the connections and friendships they developed with other people with SCD as well as with health care providers.
As happens in focus groups, group members responded to topics that emerged, and for the most part, validated one another’s ideas. For example, men and women talked about concerns with under-employment, limited income, and medical expenses. Concerns that individuals with SCD seeking pain medication could be/are often stereotyped as addicts frequently emerged. The topic of health promotion was validated. Health promotion activities mentioned included eating healthy, drinking lots of water, and learning how to deal with stress or emotional situations. Race issues included: greater perceived empathy from ethnic minority providers, lack of information in the African American community itself, and lack of attention and under-funding because SCD is perceived as a “Black” disease.