JMIR Publications

ABSTRACT

Background:

Survivorship care plans (SCPs) i.e., personalised healthcare plans for cancer survivors, can be used to support the growing group of melanoma survivors throughout their disease trajectory. However, implementation and effectiveness of SCPs are suboptimal and could benefit from involvement of stakeholders in developing a user-centered design.

Objective:

The aim of this study was to identify the ideal SCP for patients with melanoma in terms of functions and features to be included according to different stakeholders, and to explore their underlying motives.

Methods:

Three cocreation sessions were organised with mixed samples of stakeholders i.e., patients with (a history of) melanoma (n=4), healthcare providers (HCPs) active in melanoma care (n=3) and IT-specialists active in hospital IT-departments (n=6). They were asked to compose their ideal melanoma SCP based on potential functions and features identified from prior qualitative research. These functions and features belonged to one of the four main categories of survivorship care (SSC): 1) information and education, 2) identification and treatment, 3) oncological follow-up and 4) coordination. Participants were asked to explain their motives for including functions and features. Ideas were shared between stakeholders and interaction was promoted. Descriptive statistics were used to determine the ideal SCP per stakeholder group. To analyse underlying motives, all co-creation sessions were audio-taped, transcribed verbatim, and analysed in a thematic content analysis.

Results:

With regard to their ideal SCPs, all stakeholders added functions from all four SSC categories. Patients assembled a rather compact SCP with category 2 on identification and treatment being most important. Both HCPs and IT professionals constructed a somewhat larger SCP, with category 3 on oncological follow-up being the most important aspect and HCPs also focusing on category 4 on coordination. As for the motives behind their ideal SCP compositions, patients predominantly added functions based on their personal experiences or experiences from fellow patients, whereas both HCPS and IT professionals based their compositions primarily on their respective areas of expertise: HCPs related their additions to their roles as medical practitioners e.g., in providing a complete treatment plan and obtaining informed consent, while IT-professionals’ contributions were mainly influenced by feasibility and privacy concerns.

Conclusions:

This cocreation study provides insights into stakeholders’ ideal melanoma SCP and the motivations behind them. Considering the diversity in both the preferences and underlying motives regarding SCP composition between patients, HCPs and IT-specialists, it is crucial to develop a broad SCP that extends beyond traditional SCP content, emphasising personalisation. In addition to continued stakeholder involvement, efforts should be focused on addressing potential feasibility and privacy issues to ensure the SCP meets both patients’ and HCPs’ needs.