Introduction: Cancer and its treatment can have long-lasting or late-onset effects. A robust survivorship program, founded on distress screening and survivorship care plans as recommended by the Institute of Medicine and Commission on Cancer (CoC), can offer support, guide treatment, and provide education in the years after completing cancer treatment. A survivorship program can also empower survivors to take charge of their health and teach them how to educate their family members and healthcare team regarding their needs.
Objective: The Coleman Supportive Oncology Collaborative (CSOC) was charged with finding a tool that would identify priority needs of cancer survivors subsequent to completing treatment.
Methods: The CSOC performed a literature review of screening tools used to identify distress and nutrition and physical concerns in cancer survivors. We also conducted collaborative sessions with physicians, nurses, social workers, and survivors to review existing tools and care models. Those efforts did not produce a tool that we believe addresses holistic needs of cancer survivors. Therefore, we devised a tool in conjunction with NCCN and ASCO survivorship standards on psychosocial, physical, and practical concerns.
Results: The CSOC created the “Questions for the Oncology Survivorship Appointment” tool. This instrument included the following: Distress/Anxiety PHQ-4 (adapted from Andersen BA. J Clin Oncol, 2014); Practical, Family/Caregiver, Spiritual/Faith/Religious Nutrition, and Physical Concerns (adapted from the NCCN Distress Thermometer and problem list); Treatment and Care Concerns; and Lifestyle Factors (adapted from the NCCN Guidelines for Survivorship and ASCO Survivorship Guidelines). The tool “Questions for the Oncology Survivorship Appointment” is under pilot at 4 comprehensive cancer centers; 2 are safety-net sites. Patients answer questions within the tool prior to their survivorship care visits. The questionnaire results are used by clinicians and their team to guide survivorship visits and subsequent care while ensuring patient concerns are addressed. Prepilot data were collected at 1 site, as reported by Robinson et al at ASCO 2016.
Conclusions: During an expansive literature review and interviews with clinicians having regular exposure to cancer survivors, the CSOC did not find a specific survivorship screening tool that addressed the holistic needs of survivors as they enter the posttreatment stage of care. As a result, we created the “Questions for the Oncology Survivorship Appointment” instrument by adapting validated tools. Four sites are piloting the tool and collecting comparison data.