Engaging stakeholders to inform the adaptation of a personalized electronic care planning tool for cancer follow-up care (Preprint)
Authors: Sohl Stephanie Jean , Duncan Pamela W. , Thakur Elyse , Puccinelli-Ortega Nicole , Salsman John M. , Russell Greg , Pasche Boris C. , Wentworth Stacy , Miller Jr David P. , Wagner Lynne I. , Topaloglu Umit 
Published: July 2022

BACKGROUND

Approximately 66% of patients diagnosed with colorectal cancer will survive for at least 5 years and engaging patients in an active role to optimize their health will improve outcomes. Clinical guidelines recommend patients receive a comprehensive care plan (CP) when transitioning from active treatment to survivorship that includes support for ongoing symptoms and recommended healthy behaviors. Yet cancer care providers find this guideline difficult to implement due to the additional time and resources required. Future directions for survivorship care planning include enhancing information technology support for developing personalized CPs, using CPs to facilitate self-management, and assessing CPs in clinical settings.

OBJECTIVE

To develop an electronic tool for colorectal cancer follow-up care planning.

METHODS

Incorporating healthcare professional and patient stakeholder input is fundamental to the successful integration of any tool into the clinical workflow. Thus, we followed the Integrate, Design, Assess and Share (IDEAS) framework to adapt an existing application for stroke care planning (COMPASS-CP) to meet the needs of colorectal cancer survivors (COMPASS-CP CFC). Constructs from the Consolidated Framework for Implementation Research (CFIR) guided our approach. We completed this work in three phases: (1) gathered qualitative feedback from stakeholders about the follow-up CP generation design and workflow; (2) adapted algorithms and resource data sources needed to generate a follow-up CP; and (3) optimized the usability of the adapted prototype of COMPASS-CP CFC. We also quantitatively measured usability (target average score of ≥70; range=0-100), acceptability, appropriateness, and feasibility.

RESULTS

In the first phase, healthcare professionals (n=7) and patients and caregivers (n=7) provided qualitative feedback on COMPASS-CP CFC that informed design elements such as selection, interpretation and clinical usefulness of patient-reported measures. In phase 2, we built a minimal viable product of COMPASS-CP CFC. This tool generated CPs based on needs identified by patient-completed measures (including validated patient-reported outcomes) and EHR data, which were then matched with resources by zip code and preference to support patients’ self-management. Elements of CFIR assessed revealed that most healthcare professionals believed the tool would serve patients’ needs and had advantages (e.g., providing local community resources). In phase 3, the average System Usability Score was above our target score for healthcare professionals (n=5; M=71.0, SD=15.2) and patients (n=5; M=95.5, SD=2.1). Participants also reported high levels of acceptability, appropriateness, and feasibility. Additional CFIR-informed feedback such as desired format for training will inform future studies.

CONCLUSIONS

Data collected in this study supports initial usability of COMPASS-CP CFC and will inform next steps toward implementation in clinical care. COMPASS-CP CFC has the potential to streamline the implementation of personalized cancer follow-up care planning to enable systematic access to resources that will support self-management. Future research is needed to test the impact of COMPASS-CP CFC on health outcomes.