Of 116 eligible subjects who agreed to be contacted, 111 (96%) completed the telephone survey. There were no significant differences between the participants and nonparticipants with regards to cancer history and demographics. Participants were majority female (58%), college-educated (60%), diagnosed with primary cancer before age 21 (76%), on average 18 years from diagnosis (range 2 to 50 years), and treated with both radiation and chemotherapy (61%). Subjects ranged in age from 18 to 65 years, with the large majority (74%) between 18 and 39 years old. Nearly one quarter (23%)of participants were new patients who had never received a treatment summary and care plan before. Although all participants had health insurance, just 57% were found to have a primary care physician outside MSKCC (). Participants who had survived a lymphoma were significantly older than nonlymphoma survivors in the survey, with a median age of 42 years compared with 27 years (P < .001).
Baseline Characteristics of Survivors of Pediatric and Young Adult Cancers (N = 111)
Retention, Understanding, Value, and Dissemination
Overall response to the treatment summary and care plan was highly positive. One to 6 weeks after receiving a treatment summary and care plan in clinic, 95% of participants had retained the document; 55% had it on hand and 40% had it at home in a personal file.
To the question, “During your visit, did you understand everything on the treatment summary?” 95% subjects responded affirmatively. Of the six individuals who reported not understanding everything, one reported coming to an understanding by calling a nurse practitioner via the phone number on the document. The remaining five reported not understanding part of the cancer history, recommendations, or contact information. Only one, a 37-year-old female survivor, accepted the interviewer's offer for a clinician to call to explain the content in question; the other participants declined, indicating they would wait until their next visit for clarification.
To the question, “How valuable is the treatment summary to you?” 43% of participants selected “moderately” valuable and 50% responded “extremely” valuable. Similarly high proportions found the treatment summary and care plan helpful to them in understanding the plan for their care (95%) and considered it an important link between health care providers (95%).
Of 30 participants who had visited an outside provider since receiving the document, 10 reported giving the provider a copy of the form. No participant had visited the emergency room. Many (44%) had disseminated copies to someone in their personal circle. When compared by retention, understanding, demographics, or cancer history, participants who disseminated a summary were not significantly different from those who did not (results not shown).
A greater proportion of new patients (17 of 25; 68%) indicated learning new information from the treatment summary and care plan compared with returning patients (33 of 86; 39%; P = .009); however, new and returning participants did not differ significantly in retention, understanding, or value.
Worry and Concern
We found a small number of patients who reported frequent (15%) or almost constant (2%) general health worry in the past week. Fewer participants (6% of all subjects) rated the worry as “severe” or “very severe.“ A prior diagnosis of lymphoma (odds ratio [OR] = 2.72; 95% CI, 1.18 to 6.29; P = .02) and older age (OR = 1.06; 95% CI, 1.02 to 1.10; P = .002) increased the odds of general health worry.
Participants were questioned regarding concern and worry specifically in response to the treatment summary and care plan and its individual components. The document as a whole caused concern for 14% of participants; 86% reported that they were not concerned by the overall form. The “Screening Recommendations” section was troubling for some participants; 14% reported that this section caused concern. The “Potential Late Effects” section caused concern for 28% of participants, although moderate or extreme worry about potential late effects was reported by only 13%.
Participants were asked whether receiving the treatment summary and care plan increased the severity of health worry. Few reported moderate or extreme worry about “cancer” (4%), “coping with survivorship” (3%), or “sexual and/or reproductive issues” (6%). The seven participants who reported sexual or reproductive worry were overwhelmingly male (6 of 7 [86%], P = .02) and significantly younger compared with the other 104 participants (median age, 24 to 32 years, P = .02).
Overall, 31% of participants were found to be concerned in response to the treatment summary and care plan or its individual sections. Neither these participants nor those who reported general health worry in the past week differed significantly from others in terms of retention, understanding, value, or dissemination of the document (data not shown).
Additions to the Treatment Summary and Care Plan
A large majority (95%) of participants expressed interest in an online or wallet-card version of the treatment summary and care plan. When asked about the amount of information on the document, 80% indicated that the form provided sufficient content, 20% indicated “too little,” and none indicated “too much.” Participants requested the following additions: (1) current medications and allergies, (2) all current health care providers with contact information, (3) all surgeries (cancer related and noncancer related), (4) current late effects status, (5) tests with dates and results, (6) mental health recommendations and resources, (7) all dosages of cancer therapy.
Bivariate analysis () found that participants who sought more information on the treatment summary were significantly older (median age in years, 40 v 29; OR per year increase in age = 1.06; 95% CI, 1.02 to 1.10; P = .005), had more years of survivorship (median time since diagnosis in years, 24 v 16; OR per year increase in time since diagnosis = 1.06; 95% CI, 1.01 to 1.11; P = .01), and were more likely to have reported not fully understanding the treatment summary (OR 19.6, 95% CI: 2.06, 185.4; P = .01), compared with participants who were satisfied with the amount of information. After adjusting for age, sex, and time since diagnosis, not understanding the treatment summary increased the odds of desiring more information on the document (OR = 43.4, 95% CI, 3.43 to 548.1; P = .004) ().
Odds of Seeking More Information on the Summary of Cancer Treatment and Follow-Up Care Plan Among Survivors of Pediatric and Young Adult Cancer (N = 111)