Abstract
BackgroundPatients 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.ObjectiveThe 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.MethodsWithin 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.ResultsRecruitment 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.ConclusionsThis 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 RegistrationResearchweb.org. https://www.researchweb.org/is/sverige/project/161671International Registered Report Identifier (IRRID)DERR1-10.2196/17697
Highlights
BackgroundPituitary tumors occur at any age, but most often occur in persons at the peak of their professional career [1]
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
Pituitary tumors can be divided into nonfunctioning tumors and hormone-producing adenomas
Summary
BackgroundPituitary tumors occur at any age, but most often occur in persons at the peak of their professional career [1]. Pituitary tumors can be divided into nonfunctioning tumors (nonfunctioning pituitary adenoma and craniopharyngioma) and hormone-producing adenomas (prolactinomas, Cushing’s disease, and acromegaly). They are histologically benign, the tumor itself and its treatment often lead to lifelong hormone deficiencies, obesity, neurocognitive dysfunction, visual field defects, diabetes insipidus, and other adverse effects due to the pituitary gland’s vital regulatory function and its proximity to the hypothalamus and optic chiasm [5,6]. Patients with pituitary tumors have excess morbidity and mortality [1,2,4,7,8,9]. Recurrence is associated with excess mortality; disease control is of vital importance for patient outcomes [11]. The development and evaluation of extended patient support during this time are limited
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