Acromegaly treatment in Romania. How close are we to disease control?

Niculescu, D; Baciu, Ionela; Căpățînă, Cristina; Găloiu, Simona; Gheorghiu, Monica Livia; Radian, Șerban; Trifănescu, Raluca; Caragheorgheopol, Andra; Coculescu, Mihail; Poiană, Cătălina

doi:10.5603/ep.a2017.0041

Cited by 6 publications

(8 citation statements)

References 16 publications

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“…This might be because of the delay in diagnosing acromegaly. It takes 5–10 years on average and best 3.8 years 1–3. The patient is usually not aware of these changes and blames “ugly aging” associated with a deficit of memory, attention, as well as goal setting and execution.…”

Section: Discussionmentioning

confidence: 99%

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Executive functioning and quality of life in acromegaly

Solomon¹,

Brănișteanu²,

Dumbravă³

et al. 2019

PRBM

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IntroductionActive acromegaly is a rare chronic endocrine disorder caused by excessive growth hormone (GH). Clinical studies suggest that cognitive performance is impaired in acromegaly – particularly executive function as well as short- and long-term memory. This study compared the quality of life (QoL) and executive functioning in acromegaly patients vs healthy controls.Materials and methodsThis was an observational case–control study on 38 subjects divided into 19 acromegaly patients and 19 matched controls. The groups were evaluated for QoL, attention, and executive function. All subjects completed Acromegaly Quality of Life Questionnaire (AcroQoL), Trail Making Test (parts A and B), Stroop, and phonemic fluency tests.ResultsAcromegaly patients had an AcroQoL global score that was significantly lower than controls. There were significant differences between the acromegaly group and the control group in terms of the physical effects (P=0.001) and appearance (P<0.001) but not for personal relationships (P=0.421). Acromegaly patients performed worse in the trail making test part B. They provided significantly fewer words than healthy subjects in phonemic fluency testing. Although patients performed generally worse than controls, no significant differences were noted in the trail making test part A, Stroop test, and the constrained phonemic fluency.ConclusionAcromegaly patients display worse executive functioning than healthy controls and have a decreased QoL.

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Section: Discussionmentioning

confidence: 99%

“…Acromegaly is a rare chronic illness caused in >95% of the cases by excessive secretion of growth hormone (GH) due to pituitary adenoma; it is associated with increased mortality and morbidity 1–3. The impact of GH and IGF-1 on regulating brain functions and their neurotrophic role has been recently documented 4.…”

Section: Introductionmentioning

confidence: 99%

Executive functioning and quality of life in acromegaly

Solomon¹,

Brănișteanu²,

Dumbravă³

et al. 2019

PRBM

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“…At Parhon, patients were clinically assessed by history and clinical examinations; there were no pre-printed questionnaires or checklists. All medical staff working at Parhon have large experience treating acromegaly patients as it is the largest Pituitary Center in Romania serving most of the country’s population ( 23 ).…”

Section: Methodsmentioning

confidence: 99%

Clinical features and complications of acromegaly at diagnosis are not all the same: data from two large referral centers

Varlamov

Niculescu

Banskota

et al. 2021

Endocrine Connections

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Purpose: The number of international acromegaly-related registries is increasing; however, heterogeneity of acromegaly symptoms and signs across countries is not well described. We compared clinical disease manifestations at diagnosis between two large University referral centers from two continents. Methods: Retrospective, comparative epidemiological study of acromegaly patients at two centers; 1) C. I. Parhon National Institute of Endocrinology, “Carol Davila” University of Medicine and Pharmacy Bucharest, Romania (Parhon), and 2) Pituitary Center, Oregon Health & Science University, Portland, Oregon, United States (OHSU) from approved registries was undertaken. Data were extracted from medical charts and questionnaires. Binary logistic regression analysis was undertaken for the most frequently noted symptoms and clinical signs. Results: Study included 216 patients (87 Parhon, 129 OHSU). Age, sex and median delay in diagnosis were similar between centers. IGF-1 index was higher in patients at Parhon (3.3 vs 2.1, p < 0.001). The top five symptoms at both centers were; enlarged hands/feet, headache, arthralgia, fatigue, and irregular menses in women. A significant difference was noted for multiple signs and symptoms frequency, often >20 percentage points between centers. Center was a predictor of many signs and symptoms, independent of acromegaly biochemical severity or disease duration. Conclusion: We show in the first comparative study that differences in medical practice, documentation, and likely cultural differences can influence patients’ symptom(s) reporting and screening patterns in geographically different populations. Pooling data into large multicenter international registries databases may lead to loss of regional characteristics and thus a mixed overall picture of combined cohorts.

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“…Retrospective data from 147 patients treated in Romania who had been assessed at least once at a tertiary referral center, showed 29% disease control – defined as random serum GH <1 μg/L and age-normalized serum IGF-I. Of these, more than 90% had undergone surgery, and ~80% were receiving pharmacological treatment with SRLs ( 58 ). More recent published studies have shown that the proportion of patients with biochemical control is already being improved: another study performed in Romania demonstrated that 46.7% of the participants achieved disease control ( 34 ); a retrospective study from 191 patients of a tertiary center in Bulgaria demonstrated 84% disease control, with the most common pharmacotherapies used after surgery being single-agent long-acting SLRs (38%) or combination therapy with PEGV and an SLR (12%).…”

Section: Disease Control Across Cee Israel and Kazakhstanmentioning

confidence: 99%

Acromegaly: Clinical Care in Central and Eastern Europe, Israel, and Kazakhstan

et al. 2022

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Acromegaly is a rare condition typically caused by benign pituitary adenomas, resulting in excessive production of growth hormone. Clinical manifestations of acromegaly are diverse, varying from the overgrowth of body tissue to cardiovascular, metabolic, and osteoarticular disorders. Symptoms may emerge slowly, overlapping with other diseases and often involve many different healthcare specialists. In the last decade, efforts to provide an accurate and timely diagnosis of acromegaly have improved disease management and clinical experience. Despite this progress, marked differences in the diagnosis, treatment, and management of acromegaly exist from country-to-country. To address these inconsistencies in the region comprising Central and Eastern Europe, Israel, and Kazakhstan, a panel of acromegaly experts from 13 of these countries was convened. Acromegaly experts from each country provided available information on the approaches from their country, including regional treatment centers and multidisciplinary teams, treatment access, reimbursement and availability, and physician education, disease awareness, and patient advocacy. Across several areas of acromegaly management, divergent approaches were identified and discussed, including the provision of multidisciplinary care, approved and available treatments, and disease awareness programs. These were recognized as areas of potential improvement in the management of acromegaly, in addition to participation in national and regional acromegaly registries. Further experience exchange will facilitate the identification of specific strategies that can be adapted in each country, and widespread participation in acromegaly registries will enable their evaluation. It is anticipated that this approach will support the optimization of acromegaly patient care across this region.

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Acromegaly treatment in Romania. How close are we to disease control?

Abstract: In Romania, acromegaly benefits from the whole spectrum of therapeutic interventions. However, the control rate remains disappointing.

Cited by 6 publications

References 16 publications

Executive functioning and quality of life in acromegaly

Executive functioning and quality of life in acromegaly

Clinical features and complications of acromegaly at diagnosis are not all the same: data from two large referral centers

Acromegaly: Clinical Care in Central and Eastern Europe, Israel, and Kazakhstan

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