OBJECTIVE: While much has been written about the value of cancer survivor care plans (SCPs), little has been done to examine what stakeholders want in such tools. A project is underway to assess essential elements of a colorectal-specific cancer SCP from the perspective of healthcare providers and survivors.
METHODS: To date, 42 healthcare providers (oncology physicians and nurses, social workers, surgeons, radiologists and primary care) have been invited to participate in a two-part online survey. In addition, 54 survivors (44 from HealthPartners and at least 10 from other Minnesota Cancer Alliance organizations) were surveyed via mail. Survey content included desired components (elements rated as very, somewhat, not at all important), and when and how to introduce SCPs.
RESULTS: Of the 42 providers surveyed, 66% (28 of 42) responded to Part One and 55% (23 of 42) to Part Two. To date, 29 survivors have responded. Over 90% (26 of 28) of providers rated the following content as very important: tumor site and stage, long-term side effects, signs of recurrence, frequency of surveillance tests and oncology follow-up visits, as well as information on sexual issues and depression/anxiety. About 90% (26 of 29) of survivors categorized the following as very important: diagnostic tests received, surgical history, chemotherapy received, short-term and long-term side effects and how to manage them, and frequency of surveillance tests and oncology follow-up visits. Over half (14 of 20) of providers would introduce an SCP at treatment completion. About one-third (10 of 29) of survivors reported the tool should be introduced at time of diagnosis, almost one-third (9 of 29) at treatment completion and 21% (6 of 29) at beginning of treatment. The most frequently reported source of SCP information among both providers (83-91%, 19-21 of 23) and survivors (59- 79%, 17-23 of 29) were oncology physicians or nurses.
CONCLUSIONS: Providers and survivors have identified components essential to a colorectal cancer survivor care plan. Knowledge of the fundamental components from these key stakeholders will help focus care plan efforts to better meet the needs of survivors.