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

Abstract

BackgroundFollowing 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.MethodsIn 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.ResultsIn 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.ConclusionsThis 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.

Bridging the gap from the oncology setting to community care through a cross-Canada environmental scan

“…These barriers include lack of role clarity/role delineation, debates regarding the best follow-up strategy, differing perspectives on who should provide what care; and the type and timing of information (Grunfeld & Earle, 2010;Cheung et al, 2013;Del Guidice, Grunfeld, Harvey, Piliotis & Verma, 2009;Haq et al, 2013;Mao et al, 2009;McCabe & Jacobs, 2012;Nissen et al, 2007). The interface between primary care physician and specialist oncologists is where gaps exist at present.…”

“…The type and timing of information given to patients and to primary care physicians was noted as an important aspect for the primary care physician and a gap in current transition of care practices across British Columbia and in the literature (Del Guidice et al, 2009;Haq et al, 2013). The type of information given to patients varies greatly across the country and generally there is no standardization within any single province.…”

Development and validation of an individualized survivorship care plan (ISCP) for women with endometrial cancer during the transition of the end of active treatment to the cancer survivorship

“…The IFCP is said to make up an element in the continuity and quality of care (Howell et al, 2011), and to improve the standard of care (Haq et al, 2013). The selected process provides an example of an interdisciplinary approach for developing and implementing an IFCP, as recommended in the literature (Howell et al, 2011;Jefford et al, 2011).…”

“…In addition to these recommendations, participants also suggest that simple, easy-to-understand (non-medical) language be used and that the information contained in the IFCP be relevant to the survivor (Burg et al, 2009). In this sense, too much general information (possible symptoms of recurrence or potential side effects) can trigger anxiety and dissuade people from using the IFCP (Haq et al, 2013). Some studies suggest including a section on psychological, legal, and financial problems (Baravelli et al, 2009).…”

“…In this sense, the IFCP developed meets the recommendation that the instrument be customized and not be "one size fits all" (Brennan, Gormally, Butow, Boyle, & Spillane, 2014). What's more, giving the patient the IFCP at the end of treatment ensures that the right information is provided at the right time (Haq et al, 2013).…”