Extended Support Within a Person-Centered Practice After Surgery for Patients With Pituitary Tumors: Protocol for a Quasiexperimental Study

Abstract

Background Patients with pituitary tumors often live with lifelong consequences of their disease. Treatment options include surgery, radiotherapy, and medical therapy. Symptoms associated with the tumor or its treatment affect several areas of life. Patients need to adhere to long-term contact with both specialist and general health care providers due to the disease, complex treatments, and associated morbidity. The first year after pituitary surgery constitutes an important time period, with medical evaluations after surgery and decisions on hormonal substitution. The development and evaluation of extended patient support during this time are limited. Objective The aim of this study is to evaluate whether support within a person-centered care practice increases wellbeing for patients with pituitary tumors. Our main hypothesis is that the extended support will result in increased psychological wellbeing compared with the support given within standard of care. Secondary objectives are to evaluate whether the extended support, compared with standard care, will result in (1) better health status, (2) less fatigue, (3) higher satisfaction with care, (4) higher self-efficacy, (5) increased person-centered content in care documentation, and (6) sustained patient safety. Methods Within a quasiexperimental design, patients diagnosed with a pituitary tumor planned for neurosurgery are consecutively included in a pretest-posttest study performed at a specialist endocrine clinic. The control group receives standard of care after surgery, and the interventional group receives structured patient support for 1 year after surgery based on person-centeredness covering self-management support, accessibility, and continuity. A total of 90 patients are targeted for each group. Results Recruitment into the control group was performed between Q3 2015 and Q4 2017. Recruitment into the intervention group started in Q4 2017 and is ongoing until Q4 2020. The study is conducted according to the Declaration of Helsinki, and the protocol has received approval from a regional ethical review board. Conclusions This study entails an extensive intervention constructed in collaboration between clinicians, patients, and researchers that acknowledges accessibility, continuity, and self-management support within person-centeredness. The study has the potential to compare standard care to person-centered practice adapted specifically for patients with pituitary tumors and evaluated with a combination of patient-reported outcomes and patient-reported experience measures. Following the results, the person-centered practice may also become a useful model to further develop and explore person-centered care for patients with other rare, lifelong conditions. Trial Registration Researchweb.org. https://www.researchweb.org/is/sverige/project/161671 International Registered Report Identifier (IRRID) DERR1-10.2196/17697

Virtual magnetic resonance elastography has the feasibility to evaluate preoperative pituitary adenoma consistency

“…Ethical approval was given by The Regional Ethics Review Board and oral and written informed consent was obtained from all participants. The data was derived from the Gothenburg Pituitary Tumor (GoPT) study, which is a prospective study that is enrolling patients scheduled for pituitary surgery at Sahlgrenska University Hospital, the sole provider of neurosurgical services for 1.8 million people in the western region of Sweden [ 15 ].…”

Sinonasal Symptoms and Self-Reported Health before and after Endoscopic Pituitary Surgery—A Prospective Study

“…The data were derived from the Gothenburg Pituitary Tumor study, a prospective study in which patients scheduled for pituitary surgery at Sahlgrenska University Hospital are enrolled. 20 Sahlgrenska University Hospital is the sole provider of neurosurgical services for 1.8 million people in the western region of Sweden (Västra Götalandsregionen). Between September 2015 and March 2019, 153 patients were admitted for pituitary surgery, and of these, 109 patients were included in the present study ( Fig.…”

MCM7 as a marker of postsurgical progression in non-functioning pituitary adenomas

“…For paper I and II, patient data was derived from The Gothenburg Pituitary Tumor study (GoPT), which is an ongoing prospective study that enrolls adult patients scheduled for pituitary surgery at Sahlgrenska University Hospital since September 2015 161 .…”