Understanding Long-Term Cancer Survivors’ Preferences for Ongoing Medical Care

Abstract

BACKGROUND: Due to risk for treatment-related late effects and concerns about cancer recurrence, long-term cancer survivors have unique medical needs. Survivors' preferences for care may influence adherence and care utilization. OBJECTIVE: To describe survivors' preferences for care and factors associated with preferred and actual care. DESIGN: Cross-sectional analysis of participants in a longitudinal study using mailed questionnaires. PARTICIPANTS: Survivors of ten common cancers (n = 2,107, mean years from diagnosis 8.9). MAIN MEASURES: (1) Survivors' preferences for primary care physician (PCP) and oncologist responsibilities across four types of care: cancer follow-up, cancer screening, preventive health, and comorbid conditions. (2) Survivor-reported visits to PCPs and oncologists. KEY RESULTS: The response rate was 42.1%. Most longterm survivors preferred PCPs and oncologists share care for cancer follow-up (63%) and subsequent screening (65%), while preferring PCP-led preventive health (77%) and comorbid condition (83%) care. Most survivors (88%) preferred oncologists involved in cancer follow-up care, but only 60% reported an oncologist visit in the previous 4 years, and 96% reported a PCP visit in the previous 4 years. In multivariable regressions, those with higher fear of cancer recurrence were less likely to prefer PCP-led cancer follow-up care (OR = 0.96, CI = 0.93-0.98), as did survivors with advanced cancer stage (OR = 0.56, CI = 0.39-0.79). Those with higher fear of recurrence (OR = 1.03, CI = 1.01-1.04) or who preferred oncologist-led cancer follow-up care (OR = 2.08, CI = 1.63-2.65) had greater odds of seeing an oncologist in the last 4 years. CONCLUSIONS: Most cancer survivors preferred PCPs and oncologists share care for cancer follow-up and screening, yet many had not seen an oncologist recently. Survivors preferred PCP-led care for other preventive services and management of comorbid conditions. These findings highlight the important role PCPs could play in survivor care, suggesting the need for PCP-oriented education and health system policies that support highquality PCP-led survivor care.

Psychosocial care for cancer survivors: A systematic literature review on the role of general practitioners

“…Only nine studies were conducted in countries where the GP generally does not have a gatekeeping role. We found that results were similar compared with countries where GPs have a gatekeeping role; in both type of healthcare systems, cancer survivors had more drug prescriptions, 23 management of psychosocial problems was seen as an important role of GPs, 21,26,30 patients often prefer to talk to their GP compared with other healthcare providers 34,40 —except for fear of recurrence, 38 and interventions that included follow‐up by the GP using a cancer survivorship care plan did not impact positively or negatively on depression scores 46 …”

“…The full text of the remaining 305 articles was screened by at least two investigators independently. Finally, 33 studies (five qualitative studies, 17‐21 19 observational studies, 22‐40 and nine intervention studies 41‐49 ) were included (see Figure 1).…”

“…Majority of studies (21/33) discussed depression and anxiety 19,20,22,23,26‐31,34,35,40,41,43‐49 . Five studies discussed distress 18,21,24,42,43 and six studies discussed fear of recurrence 17,33,36‐39 . However, none of these studies discussed loneliness.…”

“…However, none of these studies discussed loneliness. Most of these studies were carried out in the United Kingdom (10/33) 18‐20 , 22 , 28 , 29 , 35 , 47‐49 or in the United States (9/33) 21 , 23 , 25 , 26 , 30 , 34 , 38 , 40 , 46 , and the rest of the studies were carried out in Canada (5/33) 31 , 36 , 37 , 42 , 45 , the Netherlands (4/33) 17 , 24 , 27 , 41 , Australia (4/33), and Denmark (1/33) 33 . Although major differences in primary healthcare between these countries exist, in all these countries, except the United States, the GP functions as a gatekeeper.…”

“…Smith et al 36 . showed in a cross‐sectional survey study among 2107 cancer survivors (good quality) that patients with higher fear of cancer recurrence were less likely to prefer GP‐led cancer follow‐up care compared with shared care (OR = 0.96, 95% CI [0.93 to 0.98]) 38 . In another observational study ( N = 1065 breast cancer survivors and 587 GPs; poor quality), Smith et al 36 .…”