Development and psychometric evaluation of a questionnaire to measure cancer patients’ perception of care coordination

BACKGROUND: Although the importance of care coordination (CC) is well-recognized, cancer patients often receive poorly coordinated care across varied care settings and different oncology providers. Efforts to improve cancer care are hampered by lack of adequate measures. In this two-part, mixed-method study, we describe the development, refinement, and validation of a new care coordination instrument (CCI) designed to assess cancer patients’ perception of CC. METHODS: In Study 1, an initial CCI was developed incorporating questions based on literature review. The items were then modified following four field tests conducted in a large academic hospital with oncology nurses (n = 20) and cancer patients (n = 120). This modified instrument was used to determine whether the CCI was able to distinguish CC between two practices (30 GI and 30 myeloma patients) within the same hospital setting. In Study 2, 68 patients receiving community-based care participated in seven focus groups. Based on these discussions, the CCI items were again refined, and psychometric evaluation was conducted to assess the quality of the instrument. RESULTS: Based on field tests, 3 domains of the CCI, Communication, Navigation, and Operational, were defined as critical components of CC. The Operational domain evaluates efficiency of care and is unique to this CCI. The field test demonstrated that GI patients reported significantly better CC Overall and for the Communication and Navigation domains (all p < .05). In Study 2, patients expressed concordance with the CCI items and their CC experiences, establishing validity of the CCI. Qualitative analysis of the focus group discussions indicated that the items with the highest frequencies of participants’ comments were related to the concepts of Navigator, Team, Survey, and Communication. Quantitative analysis identified items with a limited response range or high rates of “neutral” responses; accordingly, those items were removed. The final CCI survey is a 29 item, multiple-choice questionnaire with excellent reliability, Cronbach’s α = .922. CONCLUSIONS: We developed a novel, patient-centered tool with excellent psychometric properties that can be utilized across varied practice settings to assess patients’ perception of cancer care coordination. TRIAL REGISTRATION: Not required; retrospectively registered ClinicalTrials.gov NCT03594006 20 July 2018.