Abstract
BackgroundAlthough cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature. Interactive survivorship care plans in the form of a personal decision support aid could provide an opportunity to not only engage survivors in their health care, but also capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions. The objective of this research is to formulate an evidence-based model framework for implementing breast cancer survivorship guidelines via an online breast cancer survivorship care plan (SCP).MethodsThe study was completed in three steps. In the first step, or the requirements gathering phase, we conducted personal interviews of breast cancer survivors to determine their use of the survivorship care plan (SCP) and related needs to determine core SCP functions and formulate an implementation framework for an online SCP. In the second step, we used the framework as a guide to design and develop the online SCP tool. Finally, in the third step, we conducted preliminary testing to determine the feasibility of the developed tool among online users.ResultsFifteen breast cancer survivors were consulted, who reported several issues from their use of the traditional paper-based SCP. Four themes were identified that represent the SCP’s core desired functions. Eight features were matched to implement these core functions. Using a personal decision approach, an online SCP tool called ACESO that incorporates these features and functions was developed. Preliminary feasibility testing yielded overall positive responses from breast cancer survivors (n = 51).ConclusionOur study demonstrated that survivors face challenges from their use of a traditional paper-based SCP. The online SCP we developed is technically feasible and has the potential to effectively engage breast cancer survivors in self-management and shared decision-making with their clinicians and caregivers. Further testing is required to assess its usability and long-term impact.
Highlights
Cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature
Patient-generated health data (PGHD) provides an opportunity to engage survivors in their health care, and capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions [17]
We developed and present a conceptual web-based breast cancer (BC) survivorship and personal decision support tool called After Cancer Education and Support Operations (ACESO), which provides an interactive way for patients to manage their condition and deliver timely risk-adapted alerts based on information contained in their personalized survivorship care plan (SCP) and the collected PGHD
Summary
Cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature. Intensive medications and therapies such as radiation, chemotherapy and hormonal therapy have led to BC survivors experiencing a wide spectrum of treatment-related side effects, including poor sleep quality [2,3,4], depression [5,6,7], anxiety [6, 8], impaired sexual function [9,10,11], weight gain [12,13,14] and fatigue [15, 16]. Patient-generated health data (PGHD) provides an opportunity to engage survivors in their health care, and capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions [17]
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