Baseline characteristics
A total of 31 subjects were consented for both FGs and a total of 12 attended the meeting. All participants in both FGs were Hispanics and most (11/12) were women. The median age was 53 (39-62) years. Median household income was $ 47,772 (range 27,506-60,907).
Out of the fifty patients approached for the pilot study, two were found to be ineligible and 34 agreed to participate. Median age of participants was 48 (range 40-69) years; two thirds were women, 79% were Hispanic and the median household income was $ 42,518 (range 24,454-101,546). Fifty three percent were married. Cancer diagnosis included solid tumor in 80% and hematological malignancy in 20% patients. (Table 1) Median time since diagnosis was 0.8 years (range 0.06 to 10.9 years). Eighty two percent completed the Spanish version of PROQOL. Median time to complete the instrument was 7 (range 2-18) minutes.
Focus group findings
FG participants agreed that the domains included in the PROQOL represented the most important psychosocial needs in their cancer continuum. They reported no difficulty in understanding the questions/ concerns in individual domains and did not see a need to add any other questions. One participant reported having experienced all of those concerns listed under the domain of emotional health:
“All these concerns, I have felt all of them at some point or other.”(FG 1 participant #4)
When asked about the usefulness of the PROQOL in clinic, the participants agreed that this would be a useful tool to help discuss less commonly talked about concerns.
“I think it is a good idea…. I hope the doctors do take these things into consideration, and do bring them up.” ( FG2 participant #2)
Main themes around psychosocial aspects of cancer care were improving communication with providers and others, and the emotional impact of getting a cancer diagnosis. One participant noted:
“when one knows that, one gets very emotional and starts crying, and it’s really hard to bring up concerns with the doctor because you’re just crying, and.. you just waste time.” (FG2 participant # 3)
Participants reflected on the financial strain and increased vulnerability due to cancer.
“I understand that because all that, with the financial situation, it all piles up and you still feel the illness inside, and it leads to the depression.” (FG1 participant #6)
“I stopped as well, stopped going to a specialist, because every visit is $100.” (FG1 participant #5)
“So, for myself, I was diagnosed with leukemia, and I needed a bone marrow transplant, but I couldn’t afford it and for four years I was waiting, and finally found a research study in Maryland where I could have that done for free.. and I had to sacrifice a lot, like leaving my family for 8 months, being by myself.” (FG2 participant #5)
“once you have cancer the emotional damage and vulnerability is there. It’s hard to go back.” ( FG2 participant #1)
Participants also reported a high degree of satisfaction after the FG meeting since it gave them an opportunity to engage with each other by sharing their relevant experiences, much like a support group environment.
“…because sometimes you feel alone, and like the worst has hit you, then you hear about people that do have it a lot worse than you.. and it kind of makes you feel like you’re not the only one.”(FG1 participant #3)
Concerns/ QOL assessed by PROQOL in pilot phase participants
Figure 1 shows results from the PROQOL instrument question, “What is your single biggest concern?”. The three most common concerns endorsed by the pilot phase participants were ‘Money’ (32%) and ‘Cancer Diagnosis, Treatment and Survivorship’ (32%) and ‘Physical Health’ (15%). The majority of participants who endorsed “money” as a concern reported difficulty with medical bills, non-medical costs, living expenses etc. For most participants who endorsed Cancer Diagnosis, Treatment and Survivorship concerns, it was treatment plans, including chemotherapy and use of complementary therapies that caused greatest concern. There was no difference in the distribution of concerns based on age, sex, marital status, type of cancer or ethnicity.
Median overall QOL was 8 (range 3-10), suggesting relatively high QOL. Figure 2 shows the mean LASA scores in the different domains for the FG participants.