How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network

Abstract

Introduction This study examined the association between sociodemographic, cancer treatment, and care delivery factors on young adult cancer survivors’ confidence in managing their survivorship care. Methods Survivors aged 18-39 years (n=376) recruited from the LIVESTRONG™ Survivorship Center of Excellence Network sites completed a survey assessing self-reported receipt of survivorship care planning, expectations of their providers, and confidence in managing their survivorship care. Multivariate logistic regression identified characteristics of those reporting low confidence in managing their survivorship care. Results Mean age was 28 years; mean interval from diagnosis was 9 ± 8 years. Seventy-one percent reported currently attending an oncology survivorship clinic. Regarding survivorship care planning, 33% did not have copies of their cancer-related medical records, 48% did not have a treatment summary, and 55% had not received a survivorship care plan. Seventy percent identified the oncologist as the most important health care provider for decisions regarding test and treatment decisions, while 10% reported using a “shared-care model” involving both primary care providers and oncologists. Forty-one percent were classified as having low confidence in managing survivorship care. In multivariate analysis, low confidence was associated with non-white ethnicity and lack of a survivorship care plan (both p<.05). Discussion/Conclusion Findings suggest that provision of survivorship care plans for young adult cancer survivors can be used to improve confidence in managing survivorship care, particularly for ethnic minorities. Implications for Cancer Survivors Survivors should consider advocating for receipt of a survivorship care plan as it may facilitate confidence as a consumer of survivorship care.

Survivorship care planning and its influence on long-term patient-reported outcomes among colorectal and lung cancer survivors: the CanCORS disease-free survivor follow-up study

“…Another study has shown that treatment summaries are associated with more accurate survivor knowledge about breast and colorectal cancer diagnoses and the treatment they received [24]. Our results agree with other findings [25] that SCPs are associated with feelings of self-efficacy. We were unable to demonstrate compelling evidence of a mediating effect of self-efficacy on outcomes, however.…”

Summing it up: An integrative review of studies of cancer survivorship care plans (2006‐2013)

“…Each of the studies is summarized in Table 4. 30, 50–64 Three of these were randomized controlled trials (RCT) and 11 were observational studies, including eight survivor surveys 54, 58, 61, 62, 65–68, 69 and two interview studies of survivors 30, 63, 63 and oncology providers. 63 Two observational studies analyzed administrative data.…”

“…58, 70, 60 Five observational studies included a comparison group that either reflected survivor outcomes prior to an SCP intervention 60, 61 or a concurrent group of survivors that did not receive an SCP. 54, 59, 71 …”

“…SCP use was also associated with survivors’ reporting improved communication with 62, 77 and between providers 62 . Further, SCP were linked to improvements in self-reported 63 and objectively measured 61, 78 knowledge about cancer, treatment, and follow-up care, and to enhanced peace of mind 79, 79 and confidence 54 through providing a plan to manage follow-up care. Finally, SCP were also linked to changes in survivors’ health behaviors.…”

Perspectives of a lifelong cancer survivor—improving survivorship care

“…Good care coordination between the multiple providers involved in a survivor's care will be paramount to appropriately addressing the concerns. 27,[32][33][34] Ongoing developments in electronic health information exchange (that is, electronic and personal health records) might help facilitate this kind of multidisciplinary care, and research suggests that cancer survivors believe that electronic health information exchange will help improve coordination in cancer care. 35 Developing a multidisciplinary approach that addresses the complex nature of posttreatment survivorship is not an easy task.…”