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The quality of cancer patient experience: perspectives of patients, family members, providers and experts
  1. Edward H Wagner1,
  2. Erin J Aiello Bowles1,
  3. Sarah M Greene1,
  4. Leah Tuzzio1,
  5. Cheryl J Wiese1,
  6. Beth Kirlin1,
  7. Steven B Clauser2
  1. 1Group Health Research Institute, Seattle, Washington, USA
  2. 2Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland, USA
  1. Correspondence to Edward H Wagner, Group Health Research Institute, 1730 Minor Ave, Suite 1600, Seattle, WA 98101, USA; wagner.e{at}ghc.org

Abstract

Background Anecdotes and limited evidence suggest that a significant percentage of cancer patients encounter troublesome problems in the course of their care.

Methods The authors collected data about barriers to and facilitators of high-quality cancer care and innovative solutions to improve quality from three sources: focus groups with patients, family members of cancer patients and providers; site visits to cancer care providers and organisations in three American communities; and expert interviews.

Results The authors' respondents consistently described a similar list of problems facing the individual with a suspicion or diagnosis of cancer and his/her family: delays in and lack of coordination of care, patient information gaps and passivity, inadequate attention to emotional and social problems, and difficulty accessing services because of inadequate insurance, limited financial resources or rural residence. The fragmentation and uncertain accountability of cancer care contribute to these issues. Respondents recommended linking patients with a care navigator or manager, using computer technology to better inform and support patients and connect providers, and reforming provider reimbursement to encourage more patient-centred care.

Conclusions Cancer patients and their families have urgent needs for information and support especially early in their course. To meet these needs, early cancer care must be better organised, integrated, and patient centred. The Institute of Medicine's Model for the Delivery of Psychosocial Services appears to provide a relevant guide to delivering cancer care that better meets patient and family needs.

  • Patient experience
  • quality of care
  • cancer
  • patient satisfaction
  • qualitative data
  • healthcare quality
  • patient satisfaction
  • qualitative research

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Footnotes

  • Funding This work was supported by a contract (PO-263-MQ-516309) and grant (U19 CA79689) from the National Cancer Institute. There are no financial disclosures.

  • Competing interests None declared.

  • Ethics approval This study was conducted with the approval of the Group Health Human Subjects Review Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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