Addressing Long-Term Emotional Distress in Cancer Survivors: Developing a Training for Primary Care Teams

Background and Purpose. Advances in the biomedical treatment of cancer have overshadowed the potentially debilitating emotional impact of the illness.  More than 14 million cancer survivors live in the US today, with the numbers reaching 19 million by 2024. Fear of cancer recurrence (FCR), or the worry that cancer will come back in the same or different part of the body, is a pervasive and generally unaddressed emotional issue confronting survivors. Screening and tailored interventions are needed to address FCR. Increasing numbers of survivors combined with the limited capacity of oncology programs has shifted the care for many survivors to primary care providers (PCSs). PCPs, however, tend to have limited training and confidence in their ability to address cancer-specific concerns. This paper reports development of an empirically-based training program to help primary care teams screen for and address FCR      

Methods. Purposive sampling was used to identify expert physicians, nurses, behavioral health providers and cancer survivors to participate in the development of the training.  Informed by the conceptual framework of self-regulation model of illness (Leventhal, Diefenbach & Leventhal, 1992) and empirical literature, 42 in-depth, semi-structured telephone interviews identified key issues for inclusion of trainings for PCPs. Recorded interviews were transcribed and content analysis was performed according to the principles of naturalistic inquiry. 

Findings.  The sample strata included clinicians representing disciplines of: Medicine N=13, Nursing N=8, Psychology N=7, Public Health N=2, Social Work N=8, Chaplaincy N=1`and Cancer Survivors  =12.  Please note that total is over 42 because some professionals also identified as cancer survivors.  The average years of professional experience was 19.9.  Findings confirmed the empirical literature describing high prevalence and varied levels of severity of FCR.  Congruent with Leventhal et al.’s model, participants provided rich definitions of FCR, ranging from a normal process of cognitive adaptation to omnipresent anxiety.  While there was agreement that almost all cancer survivors experience some degree of FCR, findings indicated confusion about the best approach to screen for FCR; none of the participants reported currently screening for FCR in clinical practice.  Participants identified both opportunities and barriers to addressing FCR in primary care settings, with barriers largely focused on multiple demands and limited time availability of physicians.  The range of interventions recommended to address FCR included: normalization, education, support of recommended health behaviors, and referrals to community resources for counseling and peer support.

Conclusion and Implications. Findings support emerging recognition that FCR is a significant emotional issue confronting cancer survivors. The suggested interventions based upon clinical practice are important contributions to the limited literature on interventions to address FCR.  The findings provide empirical support for training PCPs to take an integrated team approach to addressing FCR given the limited time and competing demands for physicians.  Results were used to develop a 30 minute training on FCR for PCP teams, which is currently being piloted in hospital-affiliated primary care settings in New England.  The intent of the training is to address unmet training needs in primary care and improve the emotional well-being of cancer survivors.