2 April 2016

National Quality Registry for Pituitary Disease

  • Registry Manager: Stockholm County Council
  • Registry Centre - affiliation: Regional Cancer Centre Stockholm Gotland
  • Start year: 1991
  • Classifications used: ICD10, ATC (pharmaceuticals)
  • This registry contains data on: Pharmaceuticals, Diagnoses, Interventions, Inpatient Care, Specialised Outpatient Care, PROM or other patient-reported health effects, Risk Factors, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

The Swedish Pituitary Registry is a national quality registry founded and managed by the Swedish Pituitary Group. The Pituitary Group contains representatives from the country’s six healthcare regions in endocrinology, neurosurgery, oncology, ophthalmology and pathology.

The purpose of the registry is to ensure that all patients in the country with pituitary tumours or pituitary diseases receive equal treatment and follow-up.

Due to their mode of growth, tumours of the pituitary can suppress normal hormone production and affect vision or visual acuity. Hormone-producing tumours cause symptoms that are specific to the overproduced hormone. The patients are most often of working age.

The data registered includes age, sex, diagnosis, radiographic findings, results of eye examinations, hormone concentrations, hormone replacement therapy, height, weight, quality of life questionnaire (EQ-5D) and ability to work. Where applicable, pharmacological treatment, type of surgery, type of radiation therapy, and any complications of provided therapy are also registered.

As there is a risk of relapse and hormone deficiencies can occur after several years (particularly after radiation therapy), lifelong monitoring is usually required. Any hormone replacement therapy and/or pharmacological treatment requires regular monitoring. Methods for X-ray examinations, surgeries, radiation techniques and new pharmaceuticals are continuously developed.

As relatively few patients suffer from pituitary tumours or other diseases of the pituitary gland (about 300-500 new cases per year in Sweden), it is difficult for an individual physician to evaluate the efficacy and benefits of changes in methods and treatments. A national quality registry facilitates such evaluations.

Population

Tumours of the pituitary gland and other pituitary processes (diagnosis list available). Women and men of all ages throughout the country. Patients diagnosed from 1991 onwards.

The registry includes five forms: Registration, Surgical Treatment, Radiation Therapy, Follow-up and Quality of Life Questionnaire (EQ-5D).

The registration form is completed as soon as the diagnosis is confirmed, and also serves as registration to the Swedish Cancer Registry in the event the diagnosis is mandatory for registration because the quality registry contains the information included in a cancer notification to the National Board of Health and Welfare.

The form for surgical treatment is completed as soon as the surgery is performed and also serves as registration to the Swedish Cancer Registry in the event the diagnosis is mandatory.

The radiation therapy form is completed by the supervising oncologist when treatment for the tumour has been completed.

The follow-up form is completed annually during follow-up appointments with the endocrinologist.

The quality of life questionnaire, EQ-5D, is given to the patient at initial consultation and then annually at follow-up appointments with the endocrinologist.

Ages in the registry

All ages.

Total volume of registry

Approximately 4,400 patients are registered.

Volume over the past operating year

About 280 new patient registrations per year.

Coverage rate

About 70 percent in total in the registry. Nearly 100 percent coverage rate for diagnoses such as acromegaly, Mb Cushing and TSH-om. Lower coverage rates for e.g. prolactinoma, particularly smaller tumours, which are followed-up relatively frequently by women’s clinics, private practice gynaecologists or specialist physicians at medical clinics.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.

Category: Endocrine organs

Certification level: 3

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