Patient-focussed outcomes in acromegaly

Guitelman, Mirtha; Lomba, Alín Abreu; Espinosa-de-los-Monteros, Ana Laura; Mercado, Moisés

doi:10.1007/s11102-013-0519-8

Cited by 7 publications

(10 citation statements)

References 44 publications

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“…(14,15) Additionally, from the patient's perspective, symptoms and QoL are critical parameters of disease control (6, 12), therefore they should be assessed in clinical practice for an adequate long-term management of acromegaly. (13) Discrepancy between patient's and physician's ratings of general health status has been previously demonstrated. (6,16,17) The consequence of such a discordant viewpoint regarding disease activity is that decisions are often prone to not being shared between patients and physicians (16).…”

Section: Introductionmentioning

confidence: 95%

“…Even when biochemical control is achieved, many patients still suffer from physical and psychological residual morbidity that can lead to persistently impaired QoL. (6, [12][13][14] In fact, the correlation between "biochemical" severity (measured by IGF-1 levels) and impact of disease on patient's lives is weak. (14,15) Additionally, from the patient's perspective, symptoms and QoL are critical parameters of disease control (6, 12), therefore they should be assessed in clinical practice for an adequate long-term management of acromegaly.…”

Section: Introductionmentioning

confidence: 99%

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Acromegaly Disease Activity According to ACRODAT®, in Spain: ACROVAL Study

Marazuela

Blanco

Bernabéu

et al. 2021

Preprint

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Objectives: To evaluate disease activity status using the Acromegaly Disease Activity Tool (ACRODAT®) in a cohort of Spanish acromegaly patients, to assess the relationship between the level of disease activity according to both ACRODAT® and the physicians’ clinical evaluation, and to study the potential discrepancies in the perception of symptoms between physicians and patients.Design: Multicenter, observational, descriptive and cross-sectional study. Methods: Disease activity was assessed in adult patients with acromegaly under pharmacological treatment during at least 6 months using ACRODAT®.Results: According to ACRODAT®, 48.2%, 31.8% and 20.0% of a total of 111 patients were classified as having a stable disease (S), mild disease activity (M-DA) and significant disease activity (S-DA) respectively. ACRODAT® classification of disease activity significantly correlated with physicians’ opinion, with a moderate inter-rater agreement and a specificity of 92.45% (PPV=86.21%). No correlation was found between IGF-1 levels and severity of symptoms or quality of life (QoL). A decision to take clinical action was significantly more frequent in S-DA and M-DA patients than S patients but no action was taken on 5 (22.7%) and 27 (77.1%) S-DA and M-DA patients, respectivelyConclusions: ACRODAT® detected disease activity in 51.8% of patients. Interestingly, although M-DA and S-DA patients were likely to be in the process of being controlled, action was not always taken on these patients. ACRODAT® is a validated and highly specific tool that may be useful to routinely monitor acromegaly and to identify patients with non-obvious disease activity by incorporating “patient-centered” parameters like symptoms and QoL to the clinical evaluation of acromegaly.

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Section: Introductionmentioning

confidence: 95%

Section: Introductionmentioning

confidence: 99%

Acromegaly Disease Activity According to ACRODAT®, in Spain: ACROVAL Study

Marazuela

Blanco

Bernabéu

et al. 2021

Preprint

View full text Add to dashboard Cite

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“…In these individuals, factors such as being female, duration of the disease [ 3 ], age, and radiotherapy [ 4 ] have been negatively associated with QoL. Although improvement in QoL may be achieved with drug therapy or surgery [ 5 , 6 ], physical and psychological morbidities may impair QoL, even in acromegalic patients in long-term biochemical remission (i.e., patients with controlled disease) [ 7 , 8 ]. Therefore, the data on the correlation between disease control and QoL in acromegaly are controversial [ 9 – 14 ].…”

Section: Introductionmentioning

confidence: 99%

“…Few studies indexed in MEDLINE were found on this subject in Latin America. We found a single case report from Argentina [ 5 ] and one study with 50 patients from Mexico [ 8 ]. In this study, we aimed to identify the factors associated with quality of life in patients with acromegaly with follow-up at the referral service in neuroendocrinology of the state of Maranhão, northeast of Brazil.…”

Section: Introductionmentioning

confidence: 99%

Higher Income and Integration into the Workforce Are the Main Factors Associated with Quality of Life in Acromegalic Patients in Northeastern Brazil

GuimarãesSá

Ferreira

Souza³

et al. 2018

International Journal of Endocrinology

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Objective To identify the factors associated with quality of life in patients with acromegaly with follow-up at the referral service in neuroendocrinology of the state of Maranhão, northeast Brazil. Methods The Acromegaly Quality of Life Questionnaire (Acro-QoL) was used. Factors independently associated with quality of life were identified using multivariate linear regression, with p values < 0.05 considered significant. Results The multivariate linear regression analysis indicated a positive association between being integrated into the job market and quality of life scores in the overall domain (β = 0.288, p = 0.003), psychological domain (β = 0.291, p = 0.032), and personal relationship domain (β = 0.314, p = 0.019). We also observed a positive association with income and the quality of life scores in all domains as follows: overall domain (β = 0.037, p = 0.003), physical domain (β = 0.988, p = 0.001), psychological domain (β = 0.342, p = 0.008), physical appearance domain (β = 0.270, p = 0.049), and personal relationship domain (β = 0.315, p = 0.012). Conclusion For patients with acromegaly living in one of the least developed regions of Brazil, integration into the job market and a higher income were associated with a better quality of life.

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“…These skin changes are well known to impair the quality of life in patients with acromegaly. 8,13 Therefore, we want to investigate whether transsphenoidal surgery of GH-producing adenoma leads to a decrease in CVG in patients suffering from acromegaly related to the levels of IGF-1.…”

Section: Introductionmentioning

confidence: 99%

Reduction in Cutis Verticis Gyrata after Transsphenoidal Pituitary Resection of Growth Hormone–Secreting Adenoma

Pinggera

Marsoner

Seiz-Rosenhagen

et al. 2016

IJNS

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Aim?Cutis verticis gyrata (CVG) describes a hypertrophy and folding of the skin that appears as gyration of the scalp. Secondary CVG is a common symptom of growth hormone (GH)?producing adenoma of the pituitary and an early sign of acromegaly. We hypothesized that surgical removal of a pituitary adenoma with a consecutive decrease in hormone levels will cause a reduction in gyration. Methods?Imaging and laboratory examination of 10 patients (median age: 44 years) with GH-producing adenoma have been evaluated retrospectively. Surgical treatment consisted of endonasal transsphenoidal resection of the adenoma, followed by endocrinologic and radiographic follow-up. CVG was calculated as area under the curve of the scalp on preoperative coronal T1-weighted MRI, compared with postoperative follow-up imaging after 12 months (AUC, measured in cm2). In laboratory examination, the levels of insulin-like growth factor-1 (IGF-1) were analyzed accordingly as its levels are constant throughout the day. Results?After 12 months, we found a statistically significant (p?=?0.008) correlation between the decrease in IGF-1 levels (median: 219.00 ng/mL) and the reduction in CVG (median: 0.12 cm2). Conclusion?Resection of GH-producing pituitary adenoma leads to a decrease in CVG in patients suffering from acromegaly, which is strongly related to the levels of IGF-1

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Patient-focussed outcomes in acromegaly

Cited by 7 publications

References 44 publications

Acromegaly Disease Activity According to ACRODAT®, in Spain: ACROVAL Study

Acromegaly Disease Activity According to ACRODAT®, in Spain: ACROVAL Study

Higher Income and Integration into the Workforce Are the Main Factors Associated with Quality of Life in Acromegalic Patients in Northeastern Brazil

Reduction in Cutis Verticis Gyrata after Transsphenoidal Pituitary Resection of Growth Hormone–Secreting Adenoma

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