A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer
Most cancer patients do not have an explicit discussion about prognosis and treatment despite documented adverse outcomes. Few decision aids have been developed to assist the difficult discussions of palliative management. We developed decision aids for people with advanced incurable breast, colorectal, lung, and hormone-refractory prostate cancers facing first-, second-, third-, and fourth-line chemotherapy.
| Age (years) | |
| Mean | 63 ± 5 |
| Range | 46–74 |
| Gender | |
| Male | 12 (44%) |
| Female | 15 (56%) |
| Marital status | |
| Married or committed relationship | 15 (56%) |
| Divorced | 6 (22%) |
| Widowed | 2 (7%) |
| Single/never married | 2 (7%) |
| Ethnicity | |
| Caucasian | 12 (44%) |
| African American | 15 (56%) |
| Education completed | |
| Less than high school | 5 (9%) |
| Some high school | 1 (4%) |
| HS diploma/GED | 8 (30%) |
| Some college | 10 (37%) |
| Completed college | 1 (4%) |
| Completed postgrad | 2 (7%) |
| Total household income | |
| <$15,000 | 10 (37%) |
| $15,000–$34,999 | 8 (30%) |
| $35,000–$74,999 | 6 (22%) |
| >$75,000 | 1 (4%) |
| Don't know | 2 (7%) |
| Average number of people in household | 2.3 (SD 0.9) |
| Type of cancer and line of chemotherapy | |
| Breast 1st, 2nd, 3rd, 4th line | 5, 2, 1,1 = 9 total |
| Colorectal 1st, 2nd, 3rd, 4th line | 8, 5, 1, 0 = 14 total |
| Lung 1st, 2nd, 3rd, 4th line | 2, 0, 0, 0 = 2 total |
| Hormone-refractory prostate 1st, 2nd, 3rd, 4th line | 1, 1, 0, 0 = 2 |
Primary Outcome
Our primary outcome was to assess if patients would complete a decision aid with full disclosure. Of 27 patients, only one (4%) chose not to complete the decision aid after starting. She was a 55-year-old African American woman who had recently started first-line treatment for metastatic colorectal cancer. She had been told at another institution that she had lost too much weight and was too ill to benefit from chemotherapy, but with counseling she regained the weight and had a performance status of 2 at VCU. In her pretest, she answered that she thought a woman with metastatic colorectal cancer spread to bones and lymph glands could be cured, with a chance of cure of 50%. Once presented with the information (good treatments that prolong life and control symptoms but no chance of cure and 9% of patients with metastatic colorectal cancer alive at 5 years), she said that she did not want to finish the questions. She did complete her HHI, which did not change, and was not distressed (see Table 2, patient 12).
| PATIENT | SITUATION (1ST-, 2ND-, 3RD-, 4TH-LINE CHEMOTHERAPY) | COMMENT |
|---|---|---|
| 1 | CRC, 1st | “Feel little bit better.” “Didn't upset.” |
| 2 | BC, 2nd | “It gave me information on my condition.” |
| 3 | BC, 4th | “If I've got 6 months to live, I want to know so I can party” |
| 3 | LC, 1st | “It let me know I have longer than a year, possibly longer than that. Helpful.” |
| 5 | PC, 2nd | “Well, Dr. R said it couldn't be cured … I've done well for 16 months so far.” |
| 6 | CRC, 2nd | “We've already discussed everything. All information I think is helpful.” |
| 7 | CRC, 1st | “… happy that my life expectancy might be better than I thought.” At the end, he said “how good it was to talk and not hold things in.” |
| 8 | CRC, 3rd | “Verification of what I have been told.” |
| 9 | CRC, 2nd | “I know all this, but it was helpful. Especially for people who haven't heard it.” |
| 10 | CRC, 1st | |
| 11 | CRC, 2nd | “Helpful … just to think about my goals and that kind of thing.” |
| 12 | CRC, 1st | “Wouldn't know [about cure]. I can't answer those … [questions about cure rates, response rates after reviewing data]. Tell them to give people hope, not take away hope … not to 'just go smell the roses.' ” |
| 13 | CRC, 1st | “There were some things I didn't know—I didn't know about the 1–2 years—I'm not going to accept it though—I'm planning on more.” |
| 14 | BC, 1st | “Gave me info based on stats that I didn't know before.” |
| 15 | BC, 1st | “It's hard to explain. It's about what I have already known.” |
| 16 | BC, 2nd | “Helped me to understand … . That chemo is better than not having chemo.” |
| 17 | CRC, 1st | |
| 18 | CRC, 2nd | “Helpful to know what will happen, given strength, how to feel about things … to get to talk about things.” |
| 19 | BC, 1st | “Helpful. It opened my eyes, made me aware. I would want to know that.” |
| 20 | BC, 1st | Helpful. “It gave me a lot to think about. A whole lot of it I didn't know about.” |
| 21 | CRC, 1st | Helpful. “Knowing that I was doing something to help someone else. It made me think about what I have to look forward to in life.” |
| 22 | CRC, 2nd | “In a way, you're saying what the possibilities are. I just hope that I keep on trucking.” |
| 23 | BC, 3rd | “Always helpful to discuss prognosis.” |
| 24 | LC, 1st | “Helpful to know what chances I get, with or without (chemotherapy) treatment.” |
| 25 | PC, 1st | “Because the odds are a hell of a lot less than I thought, it's a bummer.” |
| 26 | BC, 1st | “It gave me a chance to see the percentage of things with breast cancer. I have a better understanding of the time line.” |
| 26 | CRC, 1st | “Made me understand some things.” On change in survival from >3 years to “don't know,” “I hope to live a right good while.” |
BC = breast cancer; CRC = colon or rectal cancer; LC = non-small-cell lung cancer; PC = hormone-refractory prostate cancer
