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Open Access Research article

Designing a multifaceted survivorship care plan to meet the information and communication needs of breast cancer patients and their family physicians: results of a qualitative pilot study

Rashida Haq12, Lineke Heus34, Natalie A Baker3, Daisy Dastur5, Fok-Han Leung26, Eman Leung7, Benjamin Li8, Kathy Vu109 and Janet A Parsons113*

Author Affiliations

1 Division of Hematology & Oncology, St. Michael’s Hospital, Toronto, ON, Canada

2 Department of Medicine, University of Toronto, Toronto, ON, Canada

3 Applied Health Research Centre, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, 30 Bond St., Toronto, ON, Canada

4 Canadian College of Naturopathic Medicine, Toronto, ON, Canada

5 Oncology Clinical Research Group, St. Michael’s Hospital, Toronto, ON, Canada

6 Department of Family Medicine, St. Michael’s Hospital, Toronto, ON, Canada

7 Knowledge Translation Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, ON, Canada

8 Department of Psychology, University of Toronto, Toronto, ON, Canada

9 Cancer Care Ontario, Toronto, ON, Canada

10 Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada

11 Department of Physical Therapy and Graduate Department of Rehabilitation Science, University of Toronto, Toronto, ON, Canada

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BMC Medical Informatics and Decision Making 2013, 13:76  doi:10.1186/1472-6947-13-76

Published: 25 July 2013

Abstract

Background

Following the completion of treatment and as they enter the follow-up phase, breast cancer patients (BCPs) often recount feeling ‘lost in transition’, and are left with many questions concerning how their ongoing care and monitoring for recurrence will be managed. Family physicians (FPs) also frequently report feeling ill-equipped to provide follow-up care to BCPs. In this three-phase qualitative pilot study we designed, implemented and evaluated a multi-faceted survivorship care plan (SCP) to address the information needs of BCPs at our facility and of their FPs.

Methods

In Phase 1 focus groups and individual interviews were conducted with 35 participants from three stakeholder groups (BCPs, FPs and oncology specialist health care providers (OHCPs)), to identify specific information needs. An SCP was then designed based on these findings, consisting of both web-based and paper-based tools (Phase 2). For Phase 3, both sets of tools were subsequently evaluated via focus groups and interviews with 26 participants. Interviews and focus groups were audio taped, transcribed and content analysed for emergent themes and patterns.

Results

In Phase 1 patients commented that web-based, paper-based and human resources components were desirable in any SCP. Patients did not focus exclusively on the post-treatment period, but instead spoke of evolving needs throughout their cancer journey. FPs indicated that any tools to support them must distill important information in a user-friendly format. In Phase 2, a pilot SCP was subsequently designed, consisting of both web-based and paper-based materials tailored specifically to the needs of BCPs as well as FPs. During Phase 3 (evaluation) BCPs indicated that the SCP was effective at addressing many of their needs, and offered suggestions for future improvements. Both patients and FPs found the pilot SCP to be an improvement from the previous standard of care. Patients perceived the quality of the BCP-FP relationship as integral to their comfort with FPs assuming follow-up responsibilities.

Conclusions

This pilot multi-component SCP shows promise in addressing the information needs of BCPs and the FPs who care for them. Next steps include refinement of the different SCP components, further evaluation (including usability testing), and planning for more extensive implementation.

Keywords:
Breast cancer; Survivorship; Qualitative methods; Pilot study; Survivorship care plan; Information needs