The National Cancer Policy Forum of the National Academies of Sciences, Engineering and Medicine sponsored a workshop on July 24 and 25, 2017 on Long-Term Survivorship after Cancer Treatment. The workshop brought together diverse stakeholders (patients, advocates, academicians, clinicians, research funders, and policymakers) to review progress and ongoing challenges since the Institute of Medicine (IOM)’s seminal report on the subject of adult cancer survivors published in 2006. This commentary profiles the content of the meeting sessions and concludes with recommendations that stem from the workshop discussions. Although there has been progress over the past decade, many of the recommendations from the 2006 report have not been fully implemented. Obstacles related to the routine delivery of standardized physical and psychosocial care services to cancer survivors are substantial, with important gaps in care for patients and caregivers. Innovative care models for cancer survivors have emerged, and changes in accreditation requirements such as the Commission on Cancer’s (CoC) requirement for survivorship care planning have put cancer survivorship on the radar. The Center for Medicare & Medicaid Innovation’s Oncology Care Model (OCM), which requires psychosocial services and the creation of survivorship care plans for its beneficiary participants, has placed increased emphasis on this service. The OCM, in conjunction with the CoC requirement, is encouraging electronic health record vendors to incorporate survivorship care planning functionality into updated versions of their products. As new models of care emerge, coordination and communication among survivors and their clinicians will be required to implement patient- and community-centered strategies.

IntroductionCancer contributes to significant illness burden in South Africa, with delayed diagnosis resulting from limited knowledge of cancer, lack of biomedical treatment and stigma. This study examines ways in which people are identified as having cancer through perspectives of traditional healing or the biomedical model. Additionally, we sought to understand the stigma associated with cancer, including stereotypes, anticipated discrimination and coping styles.MethodsLivestrong Foundation conducted 11 semi-structured focus groups with key community stakeholders in three South African townships. Interviews examined the negative consequences of being labeled with a cancer diagnosis as well as causes of, possible prevention of and barriers and methods to improve access to cancer treatment. Analyses were completed using directed content analysis.ResultsRevealed three main labeling mechanisms: physical appearance of perceived signs/symptoms of cancer, diagnosis by a traditional healer, or a biomedical diagnosis by a Western physician. Being labeled led to anticipated discrimination in response to prevalent cancer stereotypes. This contributed to delayed treatment, use of traditional healers instead of biomedical treatment and secrecy of symptoms and/or diagnosis. Further, perceptions of cancer were commonly conflated with HIV/TB owing to prior educational campaigns.ConclusionOur study deepens the understanding of the cancer labeling process in South Africa and the resulting negative effects of stigma. Future anti-stigma interventions should partner with traditional healers due to their respected community status and consider how previous health interventions may significantly impact current understandings of illness.

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Targeted distress screening in MPC survivors may allow for early identification and interventions to ameliorate distress and reduce negative downstream health effects.