OBJECTIVES:

Calcimimetic treatments (CTs) for patients with secondary hyperparathyroidism (sHPT) vary by administration mode (oral or intravenously administered by healthcare provider (HCP)) and schedule (daily or less frequent). Missing/forgetting/refusing CT may lead to poorer outcomes. The study objective was to evaluate the understanding of survey items asked of patients and HCPs that assess patient adherence, persistence, reason for discontinuation and patient satisfaction.

METHODS:

Phase 1 involved HCP (nurse, dietician and physician) cognitive debriefing interviews (CDIs). Phase 2 involved sHPT patients completing both survey and CDIs, and matched HCP completed surveys for each patient. Understanding of survey content was analyzed qualitatively. Agreement statistics between patients and HCPs were computed.

RESULTS:

Phase 1 included 10 HCPs. HCP CDIs informed development of clear response options (including anchor values to interpret adherence) and instructions. All HCP respondents indicated that HCPs were the best source for reporting adherence and persistence for intravenous CT whereas most indicated the patient was the best source for reporting oral CT. Phase 2 included 20 patients (13 intravenous CT, 7 oral CT) and 6 HCPs treating these patients. No issues with survey content or clarity were identified from patient CDIs. Most (13/20) patients found it easier conceptualizing how many CTs ‘taken’ as opposed to ‘missed’, resulting in selection of the final adherence item. Reasons for discontinuation were easily understood and satisfaction responses were reduced to simplify responding. Absolute agreement between patients and HCPs was high (75% - 90%). Kappa statistics were low due to small variation in response distributions (especially HCP report of complete adherence to oral CT), not due to misunderstanding (patient verbatims were consistent with their survey responses).

CONCLUSIONS:

Well-defined and easily understood items capturing adherence, persistence, reasons for discontinuation and satisfaction were developed, allowing future studies involving CTs to capture this information from patient and HCP report.