Cancer survivorship care in advanced primary care practices: A qualitative study of challenges and opportunities

Ellen B. Rubinstein, William L. Miller, Shawna V. Hudson, Jenna Howard, Denalee O'Malley, Jennifer Tsui, Heather Sophia Lee, Alicja Bator, Benjamin F. Crabtree

Research output: Contribution to journalArticlepeer-review

43 Scopus citations


IMPORTANCE Despite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors. OBJECTIVE To explain why primary care has not begun to integrate comprehensive cancer survivorship services. DESIGN, SETTING, AND PARTICIPANTS Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the RobertWood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes. MAIN OUTCOMES AND MEASURES Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care. RESULTS The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care. CONCLUSIONS AND RELEVANCE To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.

Original languageEnglish (US)
Pages (from-to)1726-1732
Number of pages7
JournalJAMA Internal Medicine
Issue number12
StatePublished - Dec 2017

All Science Journal Classification (ASJC) codes

  • Internal Medicine


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