Abstract
After treatment for a non-functioning pituitary adenoma (NFA) health-related quality of life (HR-QoL) improves considerably. However, the literature about the normalization of HR-QoL after treatment is inconclusive. Some researchers described a persistently decreased HR-QoL compared to reference data, while others did not. Considering this variety in observed HR-QoL outcomes, the aim of the present review was to provide a literature overview of health outcomes in patients with a NFA, using a conceptual HR-QoL model. A concrete conceptualization of the health outcomes of patients with a NFA can be helpful to understand the observed variety in HR-QoL outcomes and to improve clinical care and guidance of these patients. For this conceptualization, the Wilson and Cleary model was used. This model has a biopsychosocial character and has been validated in several patient populations. In the present review, health outcomes of patients with a NFA were described at each stage of the model e.g. biological and physiological variables, symptom status, functional status, general health perceptions and overall HR-QoL. The Wilson–Cleary model elucidates that elements at each stage of the model can contribute to the impairment in HR-QoL of patients with a NFA, which explains the reported variety in the literature. Furthermore, by applying the model, potential interventions targeting these elements can be identified. While optimal biomedical treatment has always been the focus, it is clearly not sufficient for good HR-QoL in patients with a NFA. Further improvement of HR-QoL should be supported by a pituitary specific care trajectory, including psychosocial care (e.g. self-management training), to beneficially affect characteristics of the patient and the (healthcare) environment, with the utmost goal to optimize HR-QoL in patients after treatment.
Highlights
Pituitary adenomas are benign tumours, with an estimated prevalence of 78–94 cases per 100,000 individuals, and an incidence of four cases per 100,000 individuals [1]
While some researchers described a persistent decreased health-related quality of life (HR-QoL) compared to healthy controls and reference data [5, 6], others did not [7, 8]
The present review emphasizes that patients may be in a stable medical condition, health issues are present at each level of the Wilson–Cleary model (Fig. 3)
Summary
Pituitary adenomas are benign tumours, with an estimated prevalence of 78–94 cases per 100,000 individuals, and an incidence of four cases per 100,000 individuals [1]. During the focus group conversations patients reported unmet needs regarding care and guidance they had perceived They would have received more information about adverse effects of medication, physical-, psychological-, and cognitive complaints and issues regarding sexual functioning. A disease-specific patient reported outcome measure (PROM) was developed and validated by our research group, that assesses to which extent patients with pituitary disease are bothered by certain complaints, as well as their needs for support from healthcare professionals, i.e. the Leiden Bother and Needs Questionnaire for Pituitary disease (LBNQ-Pituitary)) This PROM covers five subscales i.e. mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, issues in social functioning [38].
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