Experiences of adult cancer survivors in transitions

Abstract

Purpose: To understand the experiences of adult cancer survivors as they transition from the end of cancer treatment to follow-up care as a basis for developing actionable recommendations to integrate cancer care delivery and survivorship care. Methods: A national survey was conducted in collaboration with ten Canadian provinces to identify unmet needs and experiences with follow-up for cancer survivors between 1 and 3 years post-treatment. Surveys were available in English and French and completed either on paper or on-line. Samples were drawn from provincial cancer registries and packages distributed by mail. Results: A total of 40,790 survey packages were mailed out across the ten provinces and 12,929 surveys were completed by adults (age 30+ years), and 329 surveys were completed by adolescents and young adults (age 18 to 29 years) giving an overall response rate of 33.3%. For the purposes of this publication, the focus will be on the adult sample. In the adult cohort (age 30+ years), 51% of the sample were females, 60% were 65 years of age or older, and 77% had not experienced metastatic spread. Three-quarters reported their health as good/very good and 82% that their quality of life was good/very good. Overall, 87% experienced at least one physical concern, 78% experienced at least one emotional concern, and 44% experienced at least one practical concern. The average number of concerns reported for each domain ranged from 2.0 to 3.8. For those who sought help, a third experienced difficulty obtaining assistance or did not receive it. The most frequently cited reasons for not seeking help was that someone had told them what they were experiencing was normal. Conclusions: The results indicate that many adult survivors have concerns about physical, emotional, and practical issues but are not receiving help to reduce their suffering. It is imperative we take action to correct this current reality.