Primary hyperparathyroidism (PHPT) affects three million Americans and increases risks of fractures, kidney stones and cardiovascular disease. Surgery is the only cure, yet fewer than 10 percent of patients receive it. In Wisconsin, patients in highly disadvantaged neighborhoods are treated at half the rate of others. The project team interviewed patients to understand barriers to diagnosis and treatment. Based on their findings, they developed educational tools for both patients and providers to improve referrals and access to surgery. Through improving surgical referrals, these interventions have the potential to directly improve patient outcomes.
The Challenge
Primary hyperparathyroidism (PHPT) affects 3 million Americans and increases risks of fractures, kidney stones and cardiovascular disease. Surgical parathyroidectomy is the only curable intervention for PHPT. The surgery is over 95 percent effective, has a low complication rate, and involves minimal recovery – yet fewer than 10 percent of patients receive it. Moreover, Wisconsin patients living in highly disadvantaged neighborhoods are treated at roughly half the rate of those in low-disadvantaged neighborhoods. Undertreatment has profound and wide-ranging impacts. For example, properly treating PHPT could prevent over 30,000 osteoporotic fractures a year, which are costly events and commonly lead to permanent reductions in function and quality of life.
Project Goals
The aims of this project were to:
Understand patient perceptions of and barriers to diagnosis, referral, and surgical treatment of PHPT among patients in high-disadvantaged neighborhoods.
Develop educational tools to improve the diagnosis and referral process for patients with PHPT.
Enhance the postdoctoral fellow’s skills in qualitative research and multidisciplinary educational program development.
Results
The research team conducted semi-structured interviews with patients who received care at UW Health clinics located in highly-disadvantaged neighborhoods, as measured by the Area Deprivation Index. Among patients who were diagnosed with primary hyperparathyroidism and chose to not have surgery, themes emerged around anesthesia-related fears, concerns about neck surgery, and age-related risk appraisal. Surgical patients described overcoming these concerns through detailed counseling, successful communication of risks and benefits, and confidence in surgical expertise. Ultimately, patients who underwent surgery reported concerns similar to those who declined, but trusted clinician counseling effectively mitigated these fears.
The team created educational multimedia materials directly informed by these findings to help clinicians address anesthesia concerns, neck-specific risks, and individualized risk assessment. In partnership with Media Solutions, they developed a series of structured educational videos for primary care providers covering both foundational and advanced PHPT concepts. They are also collaborating on the development of complementary patient-facing materials, including pamphlets and short educational videos.
