The Gothenburg Pituitary Tumour Study (The GoPT-study)

This project is affiliated with GPCC.

Background

Patients with pituitary tumors can face lifelong consequences of their disease. Treatment includes surgery, radiotherapy and medical therapy. Symptoms resulting from the tumor and/or its treatment affect several factors such as cognitive function, vision and hormone production. Patients may have to adjust to long-term contact with health care providers that include both specialist and primary care, complex treatments and sequelae. The first year after pituitary surgery is a particular critical period for patients which may include multiple medical evaluations and decisions about hormone replacement therapy.

Aim

The aim of the project is to evaluate whether person-centred care increases well-being for patients with pituitary tumors. Our main hypothesis is that the person-centred care will result in increased well-being compared to standard care.

Projects

In a recently initiated randomized controlled trial, we intend to evaluate whether person-centred physical activity can increase quality of life and cardiorespiratory fitness in patients who have undergone surgical treatment for non-functioning pituitary adenomas. Furthermore, whether physical activity leads to reduced fatigue, increased confidence in own ability to manage and live with the disease and reduced cardiovascular risk profile. The intervention means that patients receive, in addition to standard care, person-centred advice and support for physical activity from a physiotherapist and nurse for 3 months. Inclusion of patients in the study is ongoing since February 2024.

Another study with a quasi-experimental design includes patients with different types of pituitary tumors who have underwent neurosurgery. A control group received standard care after surgery and a intervention group received person-centred care for one year after surgery, which included increased self-care support and increased availability and continuity of the care team. The study's hypothesis is that person-centred support provides better psychological well-being and can lead to reduced fatigue, better perceived health, higher confidence in own ability and lead to higher satisfaction with the care compared to standard care. A total of 86 and 100 patients are included in each group. Data collection in the study is completed and data analysis is ongoing.

Study potential

The development of the person-centred interventions is a collaboration between clinicians, patients and researchers. The project has the potential to compare standard care with person-centred care specifically for patients with pituitary tumors. This is evaluated in a combination of patient-reported outcome measures, objective signs of improved health and patient-reported experiences. The person-centred care models have the potential to further develop care also for other patients with rare and lifelong conditions. All studies are conducted according to the Declaration of Helsinki and have received approval from an ethical review board.