Acromegaly Quality of Life Questionnaire (ACROQOL) a new health‐related quality of life questionnaire for patients with acromegaly: development and psychometric properties

Webb, Susan M.; Prieto, Luís; Badı́a, Xavier; Albareda, M.; Catalá, Miguel; Gaztambide, Sonia; Lucas, T.; Páramo, C.; Picó, Antonio; Lucas, Anna; Halperin, Ilana; Obiols, Gabriel; Astorga, R.

doi:10.1046/j.1365-2265.2002.01597.x

Cited by 165 publications

(151 citation statements)

References 13 publications

(39 reference statements)

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“…This is the first study to report on the use of AcroQoL in a nationwide registry with controlled and uncontrolled patients. Median AcroQoL total and subscores are comparable with those reported earlier for acromegalic patients in remission (5,7,14,20,21), and higher than that in active acromegaly (5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20).…”

Section: Discussionsupporting

confidence: 71%

“…AcroQoL is the first disease-generated instrument to specifically assess dimensions of HRQoL most likely to be affected in patients with acromegaly (11). It is a diseaseoriented questionnaire containing items designed for this particular condition with the purpose to assess the self-perceived status and to allow evaluation of interventions, but also to identify patients who possibly require further treatment.…”

Section: Discussionmentioning

confidence: 99%

“…The latter is further divided into two subscales: one measuring appearance-related characteristics (7 items) and the other evaluating the impact of disease on personal relationships (7 items) (11,12).…”

Section: Questionnairesmentioning

confidence: 99%

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Health-related quality of life in acromegalic subjects: data from AcroBel, the Belgian Registry on acromegaly

et al. 2007

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Objective: To assess the impairment of quality of life (QoL), evaluated by the acromegaly QoL (AcroQoL) questionnaire, in patients with controlled and uncontrolled acromegaly. Design: Cross-sectional evaluation of AcroBel, a national observational registry of acromegalic patients newly diagnosed or in follow-up. Methods: Disease perception by the patients was evaluated by the disease-specific signs and symptoms score (SSS) and QoL was assessed by the AcroQoL questionnaire. Hormonal status was determined by central measurements of GH and IGF-I. Results: Patients (nZ291) had a median GH of 1.43 mg/l (0.65-3.03; IQR), a median IGF-I of 231 mg/l (150-367), and a mean IGF-I z-score of C1.91 (S.D. 2.21). The AcroQoL total score in the whole group was 67.1 (51.1-78.4), with a score of 65.6 (43.8-78

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Section: Discussionsupporting

confidence: 71%

Section: Discussionmentioning

confidence: 99%

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Health-related quality of life in acromegalic subjects: data from AcroBel, the Belgian Registry on acromegaly

et al. 2007

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“…The 22 questions are divided into the two main categories of physical and psychological function. The psychological dimension is subdivided into the subdimensions of appearance and personal relationships (31,32).…”

Section: Multidimensional Fatigue Inventory-20mentioning

confidence: 99%

Quality of life is impaired in association with the need for prolonged postoperative therapy by somatostatin analogs in patients with acromegaly

Postma

Netea‐Maier²,

Berg³

et al. 2012

European Journal of Endocrinology

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Objective: To assess the influence of long-acting somatostatin analogs (SSTA) after initial pituitary surgery on long-term health-related quality of life (HR-QoL) in relation to disease control in patients with acromegaly. Design: This is a cross-sectional study in two tertiary referral centers in The Netherlands. Patients and methods: One hundred and eight patients with acromegaly, in whom transsphenoidal (nZ101, 94%) or transcranial (nZ7, 6%) surgery was performed. Subsequently, 46 (43%) received additional radiotherapy and 41 (38%) were on postoperative treatment with SSTA because of persistent or recurrent disease at the time of study. All subjects filled in standardized questionnaires measuring HR-QoL. Disease control at the time of study was assessed by local IGF1 SDS. Results: IGF1 SDS were slightly higher in patients treated with SSTA in comparison with patients without use of SSTA (0.85G1.52 vs 0.25G1.21, PZ0.026), but the percentage of patients with insufficient control (IGF1 SDS O2) was not different (17 vs 9%, PZ0.208). Patients using SSTA reported poorer scores on most subscales of the RAND-36 and the acromegaly QoL and on all subscales of the multidimensional fatigue inventory-20. A subgroup analysis in patients with similar IGF1 levels (SSTAC, nZ26, IGF1 SDS 0.44G0.72 vs SSTAK, nZ44, IGF1 SDS 0.41G0.65) revealed worse scores on physical functioning, physical fatigue, reduced activity, vitality, and general health perception across all HR-QoL questionnaires in patients treated with SSTA. Conclusion: QoL is impaired in association with the need for prolonged postoperative therapy by SSTA in patients with acromegaly despite similar IGF1 levels.

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“…Alguns exemplos de questionários específicos utilizados em outras doenças, já validados para uso no Brasil e utilizados são: Kidney Disease and Quality-of-Life Short-Form (KDQOL-SFTM), específico para doença renal crônica terminal, auto-aplicável, com 80 itens (29)(30)(31) e o Acromegaly Quality of Life Questionnaire (ACROQoL), questioná-rio unidimensional que contém 22 itens divididos em dois domínios: um que avalia os aspectos físicos (8 itens) e outro que afere os aspectos psicológicos de pacientes com acromegalia (14 itens). Este último também é dividido em duas subdivisões: uma delas avalia a aparência física e a outra mede o impacto da doença nas relações pessoais do paciente (7 itens cada) (32,33).…”

Section: Instrumentos De Avaliação De Qualidade De Vidaunclassified

Instrumentos de avaliação de qualidade de vida relacionada à saúde no diabetes melito

Aguiar

Vieira

Carvalho

et al. 2008

Arq Bras Endocrinol Metab

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Assessment Instruments for a Health-Related Quality of Life in DiabetesMellitus. the assessment of Health-related quality of Life (HrqoL) has been increasingly used to measure the overall impact of diseases in people's life. diabetes mellitus (dM) is a chronic disease associated with high morbidity, mortality, and HrqoL impairment in patients. In longitudinal studies, the psychosocial impact of dM predicts mortality. the objective of this review is to describe and to analyze the main instruments used for the HrqoL evaluation in patients with dM. generic instruments such, as the quality of Well-Being Scale (qWB), Medical Outcomes Study 36-item Short-Form Health Survey (SF-36), Euroqol (Eq-5d) and specific instruments as the diabetes care Profile (dcP), diabetes quality of Life Measure (dqOL), diabetes Impact Measurement Scales (dIMS), Appraisal of diabetes Scale (AdS), Audit of diabetes-dependent quality of Life (AddqoL), diabetes Health Profile (dHP-1 and dHP-18), questionnaire on Stress in Patients with diabetes-revised (qSd-r), WellBeing Enquiry goes diabetics (WEd), diabetes-Specific quality-of-life Scale

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Acromegaly Quality of Life Questionnaire (ACROQOL) a new health‐related quality of life questionnaire for patients with acromegaly: development and psychometric properties

Abstract: We present the ACROQOL questionnaire, developed and preliminarily validated to specifically assess HRQOL in patients with acromegaly.

Cited by 165 publications

References 13 publications

Health-related quality of life in acromegalic subjects: data from AcroBel, the Belgian Registry on acromegaly

Health-related quality of life in acromegalic subjects: data from AcroBel, the Belgian Registry on acromegaly

Quality of life is impaired in association with the need for prolonged postoperative therapy by somatostatin analogs in patients with acromegaly

Instrumentos de avaliação de qualidade de vida relacionada à saúde no diabetes melito

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