Article

Journal of Cancer Survivorship

, Volume 5, Issue 3, pp 271-282

Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network

  • Marci K. CampbellAffiliated withDepartment of Nutrition, Gillings School of Global Public Health and School of Medicine, University of North Carolina at Chapel HillUNC Lineberger Comprehensive Cancer Center Email author 
  • , Irene TessaroAffiliated withUNC Lineberger Comprehensive Cancer Center
  • , Mindy GellinAffiliated withUNC Lineberger Comprehensive Cancer Center
  • , Carmina G. ValleAffiliated withDepartment of Nutrition, Gillings School of Global Public Health and School of Medicine, University of North Carolina at Chapel HillUNC Lineberger Comprehensive Cancer Center
  • , Shannon GoldenAffiliated withGoldsmith Research Group
  • , Leanne KayeAffiliated withDepartment of Nutrition, Gillings School of Global Public Health and School of Medicine, University of North Carolina at Chapel Hill
  • , Patricia A. GanzAffiliated withJonsson Comprehensive Cancer Center, University of California Los Angeles
  • , Mary S. McCabeAffiliated withMemorial Sloan-Kettering Cancer Center
  • , Linda A. JacobsAffiliated withAbramson Cancer Center, University of Pennsylvania
    • , Karen SyrjalaAffiliated withBiobehavioral Sciences Department, Fred Hutchinson Cancer Research Center
    • , Barbara AndersonAffiliated withOhio State University Comprehensive Cancer Center
    • , Alison F. JonesAffiliated withUniversity of Colorado Cancer Center
    • , Kenneth MillerAffiliated withDepartment of Nutrition, Gillings School of Global Public Health and School of Medicine, University of North Carolina at Chapel HillDana Farber Cancer Institute, Harvard University

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Abstract

Background

The objectives of this study were to characterize survivorship models of care across eight LIVESTRONG Survivorship Center of Excellence (COE) Network sites and to identify barriers and facilitators influencing survivorship care.

Methods

Using the framework of the Chronic Care Model (CCM), quantitative and qualitative methods of inquiry were conducted with the COEs. Methods included document reviews, key informant telephone interviews with 39 participants, online Assessment of Chronic Illness Care (ACIC) surveys with 40 participants, and three site visits.

Results

Several overarching themes emerged in qualitative interviews and were substantiated by quantitative methods. Health system factors supporting survivorship care include organization and leadership commitment and program champions at various levels of the health care team. System barriers include reimbursement issues, lack of space, and the need for leadership commitment to support changes in clinical practices as well as having program “champions” among clinical staff. Multiple models of care include separate survivorship clinics and integrated models as well as consultative models. COEs’ scores on the ACIC survey showed overall “reasonable support” for survivorship care; however, the clinical information system domain was least developed. Although the ACIC findings indicated “reasonable support” for self-management, the qualitative analysis revealed that self-management support was largely limited to health promotion provided in clinic-based education and counseling sessions, with few COEs providing patients with self-management tools and interventions.

Conclusions

The CCM framework captured experiences and challenges of these COEs and provided insight into the current state of survivorship care in the context of National Cancer Institute-designated comprehensive cancer centers. Findings showed that cancer patients and providers could benefit from clinical information systems that would better identify candidates for survivorship care and provide timely information. In addition, a crucial area for development is self-management support outside of clinical care.

Implications for cancer survivors

Cancer survivors may benefit from learning about the experience and challenges faced by the eight LIVESTRONG Centers of Excellence in developing programs and models for cancer survivorship care, and these findings may inform patient and caregiver efforts to seek, evaluate, and advocate for quality survivorship programs designed to meet their needs.

Keywords

Cancer Cancer survivorship Chronic care model Health care