Application of a disease‐specific, quality‐of‐life measure (QoL‐AGHDA) in growth hormone‐deficient adults and a random population sample in Sweden: validation of the measure by Rasch analysis

Wirén, Lena; Whalley, Diane; McKenna, Stephen P.; Wilhelmsen, Lars

doi:10.1046/j.1365-2265.2000.00899.x

Cited by 62 publications

(68 citation statements)

References 35 publications

(59 reference statements)

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“…In a large European study, the expected score for the general population on the AGHDA scale was up to 3.3 for men and 4.6 for women (38), compared with the mean for a large series of hypopituitary patients of 7.1 (23), whereas in this series of patients with hypopituitarism due to craniopharyngioma the mean AGHDA score was considerably greater at 11.3. Notable factors that correlated with this poor score are the age at which the disease and the GHD developed and, in AO disease, the BMI and waist circumference. Although the CO group appeared to score better than the AO group, this was shown by multivariate analysis to be attributable to age; the NHP score was worse in the AO patients, consistent with the findings of an earlier study examining GHD of mixed aetiology (20).…”

Section: Discussionmentioning

confidence: 99%

The clinical, metabolic and endocrine features and the quality of life in adults with childhood-onset craniopharyngioma compared with adult-onset craniopharyngioma

Kendall‐Taylor¹,

Jönsson²,

Abs³

et al. 2005

eur j endocrinol

114

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Background: Craniopharyngioma is a parasellar tumour that, although benign, tends to behave aggressively. It can occur at any age but most commonly presents in childhood or adolescence. Objectives: To investigate the frequency and severity of problems associated with craniopharyngioma, using the large international database (KIMS) for adult patients with GH deficiency (GHD), and to assess the differences between the adult onset (AO, aged 18 or above) disease and adults with childhood onset (CO) craniopharyngioma. Design: Inclusion criteria were: an established diagnosis of craniopharyngioma, severe GHD and no recent GH treatment. These criteria were fulfilled by 393 (184 female, 209 male) patients; 241 had AO (mean age 28.7^8.7 years) and 152 had CO disease (age 42.0^12.3 years). Disease history, clinical features and anthropometric data were recorded at the time of enrolment in the database, and body composition, serum IGF-I, serum lipids and quality of life (QoL) were assessed. Results: Peak age at onset of craniopharyngioma was 15-20 years. Ninety percent of patients had been treated surgically. CO patients were shorter than AO patients and had much lower IGF-I standard deviation scores (SDS). The majority had hypopituitarism and over 60% had diabetes insipidus. Body mass index (BMI) was higher in AO males (30.2^5.5) than in CO males (28.5^7.5); waist circumference was also greater. Obesity was more common in AO patients (51.8% vs 39.1%). Body composition did not differ between groups. Cholesterol and triglycerides were higher in AO than in CO patients, but high density lipoprotein (HDL)-and low density lipoprotein (LDL)-cholesterol did not differ. Quality of life, assessed by Quality of Life-Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) and the Nottingham Health Profile, was markedly reduced in all groups with no significant differences between them; the QoL-AGHDA score correlated with age at onset of both craniopharyngioma and GHD, and also with BMI in AO patients. Conclusions: These data emphasise the generally poor state of health of patients treated for craniopharyngioma, with respect to endocrine and metabolic function, and also the markedly reduced quality of life. In addition to GHD, most patients have evidence of hypothalamic damage with associated obesity, diabetes insipidus and hypopituitarism. Adults with CO craniopharyngioma were shorter, had lower IGF-I, lower BMI, less obesity and slightly lower blood lipid levels than patients with AO craniopharyngioma.

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Section: Discussionmentioning

confidence: 99%

The clinical, metabolic and endocrine features and the quality of life in adults with childhood-onset craniopharyngioma compared with adult-onset craniopharyngioma

Kendall‐Taylor¹,

Jönsson²,

Abs³

et al. 2005

eur j endocrinol

114

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“…Social phobia is also more prevalent in COGHD adults than in short GH-replete adults (Nicholas et al 1997). Other studies have demonstrated impaired QoL in mixedonset GHD populations, which likely reflects decreased QoL in both AO and CO patients (Table 3) (Lynch et al 1994, Burman et al 1995, Wiren et al 2000. The reduced QoL in COGHD patients of normal height calls into question the use of increased height as an indicator of successful GH therapy.…”

Section: Gh Deficiencymentioning

confidence: 99%

“…Disease-specific measures, as expected, show a much greater impairment in GHD adults. For instance, a study using the AGHDA showed decreased QoL in a large cohort of untreated GHD patients (144) compared with 1448 normal adult controls (Wiren et al 2000). The increased sick leave and disability retirement in hypopituitary adults is also suggestive of a decreased QoL (Jonsson & Nilsson 2000).…”

Section: Gh Deficiencymentioning

confidence: 99%

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Growth hormone therapy and Quality of Life: possibilities, pitfalls and mechanisms

Hull

Harvey²

2003

Journal of Endocrinology

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The actions of growth hormone (GH) are not restricted to growth: GH modulates metabolic pathways as well as neural, reproductive, immune, cardiovascular, and pulmonary physiology. The importance of GH in most physiological systems suggests that GH deficiency at any age would be associated with significant morbidity. However, prior to the advent of recombinant GH, cadaverderived GH was only used therapeutically to correct the height deficit, and thereby hypothetically improve quality of life (QoL), in GH-deficient children. Physicians now have access to unlimited, albeit expensive, supplies of recombinant GH, and are considering the advisability of GH replacement or supplementation in other patient populations. This paper analyses studies investigating the relationship between GH and QoL in GH-deficient children or adults, in GH-replete short children suffering from idiopathic short stature, Turner syndrome, or intrauterine growth retardation and in GH-deficient or replete elderly adults. Possible mechanisms by which GH might improve QoL at neural and somatic sites are also proposed.

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“…The population normative data for the QoL-AGHDA are available for the following countries: England and Wales (36)(37)(38), Spain (39), Sweden (37,40,41) and The Netherlands (37). The data for Belgium, France and Germany are in press.…”

Section: Qol-aghdamentioning

confidence: 99%

Assessment of quality of life in adult patients with GH deficiency: KIMS contribution to clinical practice and pharmacoeconomic evaluations

Kołtowska-Häggström¹,

Mattsson²,

Shalet³

2009

European Journal of Endocrinology

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Quality of life (QoL) has emerged as an important construct that has found numerous applications across healthcare-related fields, ranging from research and clinical evaluation of treatment effects to pharmacoeconomic evaluations and global healthcare policy. Impairment of QoL is one of the key clinical characteristics in adult GHD and has been extensively studied in the Pfizer International Metabolic Database (KIMS). We provide summarized evidence on GH treatment effects for both clinical and health economic applications based on the KIMS data. The primary focus is on those aspects of QoL research that cannot be investigated in the traditional clinical trial setting, such as specific patient subgroups, cross-country comparisons and long-term follow-up. First, the impact of age, gender, disease onset, primary aetiology, extent of hypopituitarism, previous radiotherapy and obesity on QoL before and during long-term GH replacement is discussed. Secondly, the studies on QoL in relation to country-specific normative values are reviewed. Finally, health economic data derived from KIMS including both burden of disease and utility assessment are evaluated. We conclude that the wide spectrum of analyses performed on the KIMS data allows for practical application of the results not only to research and clinical practice but also to health policy and global medical decision making.

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Application of a disease‐specific, quality‐of‐life measure (QoL‐AGHDA) in growth hormone‐deficient adults and a random population sample in Sweden: validation of the measure by Rasch analysis

Cited by 62 publications

References 35 publications

The clinical, metabolic and endocrine features and the quality of life in adults with childhood-onset craniopharyngioma compared with adult-onset craniopharyngioma

The clinical, metabolic and endocrine features and the quality of life in adults with childhood-onset craniopharyngioma compared with adult-onset craniopharyngioma

Growth hormone therapy and Quality of Life: possibilities, pitfalls and mechanisms

Assessment of quality of life in adult patients with GH deficiency: KIMS contribution to clinical practice and pharmacoeconomic evaluations

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