Pituitary tumours are associated with pituitary dysfunction, either hypersecretion (mainly prolactinomas, acromegaly or Cushing’s disease [CD]) or hypopituitarism, due to compression or destruction of normal pituitary cells. They may also cause headache or visual disturbances due to pressure on surrounding structures. Health-related quality of life (QoL) is a concept that refers to individual wellbeing. It is based on how a particular individual feels, responds and functions in daily life. Subjects will value their QoL, taking into account their expectations, standards and goals, as well as the emotional, physical and social aspects of their lives, which may be affected if a disease is present.1 There are two kinds of tools normally used to measure QoL: generic and specific questionnaires. In both, patients answer questions related to their perception of their health status. Answers can be rated in yes/no questions, a Likert scale (i.e. always, often, sometimes, rarely, never) or in a range (i.e. 0–100). Generic questionnaires are useful in different populations, including healthy subjects. They can help to compare QoL in different diseases, for instance. Examples of generic questionnaires used in pituitary tumours are the Nottingham Health Profile (NHP),2 Short-Form 36 (SF-36),3 the EuroQoL4–6 or the Psychological General Wellbeing Scale (PGWBS)7 (see Table 1). However, they are often not sensitive enough to appreciate particular problems that may be related to a certain disease. That is why diseasespecific questionnaires have been developed, more sensitive to detect subtle changes in QoL in a determined disease (for instance, improvement after treatment). For pituitary adenomas, questionnaires often used are AcroQoL for acromegaly,8 CushingQoL for Cushing’s syndrome (CS)9,10 and Adult Growth Hormone Deficiency Assessment (AGHDA)11 or Questions on Life Satisfaction-Hypopituitarism (QLS-H) for growth hormone (GH) deficiency12,13 (see Table 1). The following section reviews what is known about QoL in patients with pituitary tumours, both at diagnosis and after treatment, highlighting what may be helpful to improve QoL. Acromegaly Acromegaly is a syndrome caused by chronic exposure to elevated levels of GH and peripheral insulin-like growth factor 1 (IGF-I). It is associated with morphological changes (including soft tissue swelling, excessive sweating and change in patients’ voice), often not completely reversible, with physical and psychological limitations (including joint pains, headache, low energy and libido). Due to the insidious nature of the disease, the diagnosis of acromegaly is significantly delayed, being undiagnosed for years, despite the presence of signs and symptoms, thus, the impact of the disease and its treatment on the patients’ QoL can be great.14–18 When compared with the general population, SF-36 questionnaire scores are lower in acromegaly, reflecting impairment of perceived QoL in physical function dimensions, but not in the mental ones.19 Successful surgery or medical treatment may be followed by marked improvement in the patient’s overall health, often, but not always, accompanied by improvement or normalisation of biochemical parameters such as GH and IGF-I. Since comorbidities occur after many years of exposure to excessive GH, an earlier diagnosis would benefit patients’ perceived health and QoL.20,21 The availability of a questionnaire, specifically designed to evaluate the problems typical of acromegaly (AcroQoL), has favoured research in this area. This is particularly important in consideration of the fact that GH and IGF-I do not always correlate with subjective and clinical improvements experienced by patients and physicians after treatment.22 With AcroQoL, lower scores in active disease have persistently been observed in different countries, compared with patients in remission after successful therapy, with appearance being the most affected dimension and the personal relations area the least affected.23–26 However, impairments in QoL, as assessed by the generic questionnaire PGWBS, persist in ‘cured’ acromegaly compared with the normal population and patients treated for a non-functioning pituitary adenoma, mainly in the domains of general health and vitality, and similarly bad or worse than adults with GH deficiency.27
Improving Quality of Life in Patients with Pituitary Tumours
US Endocrinology, 2014;10(1):79–83 DOI: http://doi.org/10.17925/USE.2014.10.01.79
Abstract:Evaluation of health-related quality of life (QoL) in people with pituitary tumours has received much attention over the last 10–15 years. Most of them show impaired QoL, but little is known about how to prevent impairment or how to improve QoL. Our aim is to review what is known about QoL in pituitary tumours patients and to highlight the areas worth improving, for the patient’s well being. The article has four sections: acromegaly, Cushing’s syndrome, prolactinomas and non-functioning adenomas. Control of comorbidities is usually an important factor to prevent QoL impairment; however, each disease has specific characteristics that should be properly addressed in order to obtain full patient recovery after successful therapy.
Keywords: Quality of life, acromegaly, Cushing
Disclosure: The authors have no conflicts of interest to declare.
Received: January 10, 2013 Accepted January 29, 2013
Correspondence: Susan M Webb, Department of Endocrinology, Hospital de Sant Pau, C. S. Antoni Maria Claret n.167, 08025 Barcelona, Spain. E: firstname.lastname@example.org
An erratum to this article can be found below.
An erratum to this article can be found below.
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Keywords: Quality of life, acromegaly, Cushing