title: The use of self-rating questionnaires as a quantitative measure of quality of life in adult growth hormone deficiency.
abstract: The symptomatology associated with severe growth hormone (GH) deficiency in adult life is a real entity but unfortunately it is also nonspecific with extreme fatigue and obesity dominating the clinical picture. Quality of life (QOL) is a term widely used by clinicians, research scientists and policy-makers, though there is a lack of consensus over its definition. Most of the related literature lists aspects assumed to be components of QOL and most measures are based upon the assumption that QOL is related to the ability to function in certain domains of physical, social and environmental existence such as work, leisure pursuits, socializing, etc. Most published studies on QOL have utilized generic measures of health status which were developed more than 20 years ago, were not designed for clinical trials, and it is debatable whether all the questions are relevant to patients. Only the Nottingham Health Profile has content derived entirely from lay people as opposed to being written by professionals. This has led to the development of QOL measures specific for GH deficiency based on unstructured qualitative interviews (1-2 h), which, unfortunately, have been carried out in a relatively small number of patients. Furthermore, the disease-specific measures of QOL are not truly specific for GH deficiency, as the patient has in almost all cases had a pituitary tumor, undergone surgery and/or radiotherapy and is receiving other hormone therapy for additional pituitary hormone deficits. Should the ideal control population for comparison with the GH-deficient patient cohort be normal subjects or patients with chronic disorders? Placebo-controlled studies of GH therapy indicate a definite placebo effect contributing to the improvement in QOL in GH-deficient adults. QOL is generally stated to be less affected in young adults with childhood-onset GH deficiency compared with patients with adult-onset GH deficiency. How do we know? Do we have disease-specific measures applicable to the adolescent age group? In reality, many centres utilize reduced QOL as an indication for GH replacement. However, heavy reliance is placed on the subjective patient interview rather than objective use of a disease-specific questionnaire. Why? Because there is no questionnaire score (number) available to reflect degree of impairment of QOL at baseline or of improvement in QOL in response to GH therapy.
authors.affiliation: Department of Endocrinology, Christie Hospital, Manchester, UK.
authors.forename: R D
authors.initials: RD
authors.lastname: Murray
authors.forename: S M
authors.initials: SM
authors.lastname: Shalet
mesh_terms: D000328:Adult; D018849:Controlled Clinical Trials as Topic; D019382:Human Growth Hormone / Q000172:deficiency*; D006801:Humans; D011788:Quality of Life; D011795:Surveys and Questionnaires
chemical_list: D019382:Human Growth Hormone