Understanding Low Motivation for Treatment in Primary Hyperparathyroidism: A Qualitative Study of Patients and Providers in the United States.

BACKGROUND

Two thirds of patients with primary hyperparathyroidism (PHPT) go untreated, risking progressive osteoporosis, fractures, and nephrolithiasis. Low patient motivation for surgery has been identified as a significant factor limiting surgical referral and treatment. We sought to better understand what patient and clinician-level factors drive low patient motivation to identify targetable interventions.

STUDY

DESIGN

Using a qualitative phenomenological framework, we conducted semi-structured interviews with 19 primary care providers (PCPs), 14 patients who underwent parathyroidectomy, and 13 patients with a diagnosis of PHPT who declined intervention. Transcripts were independently coded by a multidisciplinary team using deductive thematic analysis mapped to the Disparities in Hyperparathyroidism framework to achieve thematic saturation.

RESULTS

Three main themes emerged: First, patients find PHPT abstract and hard to understand, resulting in poor disease comprehension and a misunderstanding of the risks and benefits of treatment. Second, PCPs describe difficulty explaining PHPT adequately in time-pressured clinical visits, and patients have few, trusted outside resources for educational support. Third, this compounded misunderstanding of disease and treatment directly results in low motivation to pursue surgery. Finally, patients and PCPs both emphasized how improving patient education is key to overcoming treatment barriers.

CONCLUSION

Untreated PHPT represents a major health service failure driven in part by poor disease literacy and constrained primary care encounters. Overcoming low surgical motivation requires the deployment of targeted and widely available patient education that clearly frame the systemic consequences of untreated disease and adequately informs risk.