Акромегалия – епидемиологични данни и въздействие върху качество на живот на пациентите
Keywords:
акромегалия, редки болести, епидемиология, качество на живот
Abstract
Акромегалията е придобито прогресиращо рядко заболяване, свързано с прекомерно производство на растежен хормон. Характеризира с прогресивно соматично обезобразяване (основно включващо лицето и крайниците) и предизвиква мултисистемни уреждания. Хората с това заболяване са изложени на риск от тежка инвалидизация и живото-застрашаващи здравни проблеми. Акромегалия е коварно хронично заболяване, което протича с повишена заболеваемост и смъртност от сърдечно-съдови, метаболитни и неопластични усложнения. Контролът на заболяването лесно може да се оцени със съвременните клинични и лабораторни методи, но за пациента от първостепенно значение е самооценката за благополучие и качество на живот. Въпреки че акромегалията е рядко заболяване, тежестта върху свързаното със здравето качество на живот е значително поради широкия спектър от съпътстващи усложения, както и необходимостта от управление през целия живот. Целта на настоящия преглед е да представи актуални данни за епидемиологията на акромегалията и въздействието на заболяването върху качеството на живот на пациентите.
References
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Colao A, Ferone D, Marzullo P, et al. Systemic complications of acromegaly: epidemiology, pathogenesis, and management. Endocrine reviews 2004; 25(1): 102-152.
Cushing H. Partial hypophysectomy for acromegaly. Ann Surg 1909; 50:1002–1017.
Melmed S. Acromegaly. Academic Press; 2017.
Luque-Ramírez M, Carreño Á, Escolá CÁ, et al. The OASIS study: therapeutic management of acromegaly in standard clinical practice. Assessment of the efficacy of various treatment strategies. Endocrinología y Nutrición 2011; 58(9): 478-486.
Melmed S, Casanueva FF, Klibanski A, et al. A consensus on the diagnosis and treatment of acromegaly complications. Pituitary 2013; 16(3): 294-302.
Vandeva S, Yaneva M, Natchev E, et al. Disease control and treatment modalities have impact on quality of life in acromegaly evaluated by Acromegaly Quality of Life (AcroQoL) Questionnaire. Endocrine 2015; 49(3): 774-782.
Dekkers OM, Biermasz NR, Pereira AM, et al. Mortality in acromegaly: a metaanalysis. The Journal of Clinical Endocrinology & Metabolism 2008; 93(1): 61-67.
https://www.orpha.net/consor/cgi-bin/Disease_Classif_Simple.php?lng=EN
Burton T, Le Nestour E, Neary M, et al. Incidence and prevalence of acromegaly in a large US health plan database. Pituitary 2016; 19(3): 262-267.
Daly AF, Rixhon M, Adam C, et al. High prevalence of pituitary adenomas: a cross-sectional study in the province of Liege, Belgium. The Journal of Clinical Endocrinology & Metabolism 2006; 91(12): 4769-4775.
Bex M, Abs R, T’Sjoen G, et al. AcroBel–the Belgian registry on acromegaly: a survey of the ‘real-life’outcome in 418 acromegalic subjects. European Journal of Endocrinology 2007; 157(4): 399-409.
Schneider HJ, Sievers C, Saller B, et al. High prevalence of biochemical acromegaly in primary care patients with elevated IGF‐1 levels. Clinical endocrinology 2008; 69(3): 432-435.
Cannavò S, Ferraù F, Ragonese M, et al. Increased prevalence of acromegaly in a highly polluted area. European Journal of Endocrinology 2010; 163(4): 509-513.
Mestrón A, Webb SM, Astorga R, et al. Epidemiology, clinical characteristics, outcome, morbidity and mortality in acromegaly based on the Spanish Acromegaly Registry (Registro Espanol de Acromegalia, REA). European Journal of Endocrinology 2004; 151(4): 439-446.
Bengtsson BÅ, Edén S, Ernest I, et al. Epidemiology and long‐term survival in acromegaly: a study of 166 cases diagnosed between 1955 and 1984. Acta Medica Scandinavica 1988; 223(4): 327-335.
Alexander L, Appleton D, Hall R, et al. Epidemiology of acromegaly in the Newcastle region. Clinical endocrinology 1980; 12(1): 71-79.
Brown C, Sampson M, Greenwood R, et al. Acromegaly: A study of epidemiological characteristics and treatment outcomes. BioScientifica 2003; 5.
Vandeva S, Jaffrain-Rea ML, Daly AF, et al. The genetics of pituitary adenomas. Best Practice & Research Clinical Endocrinology & Metabolism 2010; 24(3): 461-476.
Schneider HJ, Sievers C, Saller B, et al. High prevalence of biochemical acromegaly in primary care patients with elevated IGF‐1 levels. Clinical endocrinology 2008; 69(3): 432-435.
Sesmilo G. Epidemiología de la acromegalia en España. Endocrinología y Nutrición 2013; 60(8): 470-474.
Adelman DT, Liebert KJ, Nachtigall LB, et al. Acromegaly: the disease, its impact on patients, and managing the burden of long-term treatment. International journal of general medicine 2013; 6: 31.
Vandeva S, Elenkova A, Natchev E, et al. Epidemiological variations of aggressive growth hormone-secreting adenomas. International Journal of Endocrine Oncology 2016; 3(3): 245-257.
Vandeva S, Andreeva M, Orbetsova M, et al. Acromegaly in Bulgaria–epidemiological characteristics derived from the National Acromegaly Database. Endocrinolgia 2010; 15(3): 142-150.
Elenkova A, Аtanasova I, Кirilov G, et al. Autoimmune hypothyroidism is three times more frequent in female prolactinoma patients compared to healthy women: data from a cross-sectional case-control study. Endocrine 2017; 57(3): 486-493.
Katznelson L, Laws ER, Melmed S, et al. Acromegaly: an endocrine society clinical practice guideline. The Journal of Clinical Endocrinology & Metabolism 2014; 99(11): 3933-3951.
Въндева С, Начев Е, Захариева С. Качество на живот при пациенти с акромегалия.Наука Ендокринология 2010; 2: 92-93.
Webb SM, Badia X. Quality of life in acromegaly. Neuroendocrinology 2016; 103(1):106-111.
Ben-Shlomo A, Sheppard MC, Stephens JM, et al. Clinical, quality of life, and economic value of acromegaly disease control. Pituitary 2011; 14(3): 284-294.
Badia X, Webb SM, Prieto L, Lara N. Acromegaly quality of life questionnaire. Health Qual Life Outcomes 2004; 2:13.
Gurel M H, Bruening PR, Rhodes C, Lomax KG. Patient perspectives on the impact of acromegaly: results from individual and group interviews. Patient preference and adherence 2014; 8: 53.
Vandeva S, Elenkova A, Natchev E, et al. Treatment outcome results from the Bulgarian Acromegaly Database: adjuvant dopamine agonist therapy is efficient in less than one fifth of non-irradiated patients. Experimental and Clinical Endocrinology & Diabetes 2015; 123 (1): 66-71.
Wassenaar MJ, Biermasz NR, Kloppenburg M, et al. Clinical osteoarthritis predicts physical and psychological QoL in acromegaly patients. Growth Hormone & IGF Research 2010; 20(3): 226-233.
Miller A, Doll H, David J, Wass J. Impact of musculoskeletal disease on quality of life in long-standing acromegaly. European Journal of Endocrinology 2008; 158(5): 587-593.
Andela CD, Scharloo M, Pereira AM, et al. Quality of life (QoL) impairments in patients with a pituitary adenoma: a systematic review of QoL studies. Pituitary 2015; 18(5): 752-776.
Trepp R, Everts R, Stettler C, et al. Assessment of quality of life in patients with uncontrolled versus controlled acromegaly using the acromegaly quality of life questionnaire. Clin Endocrinol 2005; 63:103–110.
Colao A, Ferone D, Marzullo P, et al. Systemic complications of acromegaly: epidemiology, pathogenesis, and management. Endocrine reviews 2004; 25(1): 102-152.
Cushing H. Partial hypophysectomy for acromegaly. Ann Surg 1909; 50:1002–1017.
Melmed S. Acromegaly. Academic Press; 2017.
Luque-Ramírez M, Carreño Á, Escolá CÁ, et al. The OASIS study: therapeutic management of acromegaly in standard clinical practice. Assessment of the efficacy of various treatment strategies. Endocrinología y Nutrición 2011; 58(9): 478-486.
Melmed S, Casanueva FF, Klibanski A, et al. A consensus on the diagnosis and treatment of acromegaly complications. Pituitary 2013; 16(3): 294-302.
Vandeva S, Yaneva M, Natchev E, et al. Disease control and treatment modalities have impact on quality of life in acromegaly evaluated by Acromegaly Quality of Life (AcroQoL) Questionnaire. Endocrine 2015; 49(3): 774-782.
Dekkers OM, Biermasz NR, Pereira AM, et al. Mortality in acromegaly: a metaanalysis. The Journal of Clinical Endocrinology & Metabolism 2008; 93(1): 61-67.
https://www.orpha.net/consor/cgi-bin/Disease_Classif_Simple.php?lng=EN
Burton T, Le Nestour E, Neary M, et al. Incidence and prevalence of acromegaly in a large US health plan database. Pituitary 2016; 19(3): 262-267.
Daly AF, Rixhon M, Adam C, et al. High prevalence of pituitary adenomas: a cross-sectional study in the province of Liege, Belgium. The Journal of Clinical Endocrinology & Metabolism 2006; 91(12): 4769-4775.
Bex M, Abs R, T’Sjoen G, et al. AcroBel–the Belgian registry on acromegaly: a survey of the ‘real-life’outcome in 418 acromegalic subjects. European Journal of Endocrinology 2007; 157(4): 399-409.
Schneider HJ, Sievers C, Saller B, et al. High prevalence of biochemical acromegaly in primary care patients with elevated IGF‐1 levels. Clinical endocrinology 2008; 69(3): 432-435.
Cannavò S, Ferraù F, Ragonese M, et al. Increased prevalence of acromegaly in a highly polluted area. European Journal of Endocrinology 2010; 163(4): 509-513.
Mestrón A, Webb SM, Astorga R, et al. Epidemiology, clinical characteristics, outcome, morbidity and mortality in acromegaly based on the Spanish Acromegaly Registry (Registro Espanol de Acromegalia, REA). European Journal of Endocrinology 2004; 151(4): 439-446.
Bengtsson BÅ, Edén S, Ernest I, et al. Epidemiology and long‐term survival in acromegaly: a study of 166 cases diagnosed between 1955 and 1984. Acta Medica Scandinavica 1988; 223(4): 327-335.
Alexander L, Appleton D, Hall R, et al. Epidemiology of acromegaly in the Newcastle region. Clinical endocrinology 1980; 12(1): 71-79.
Brown C, Sampson M, Greenwood R, et al. Acromegaly: A study of epidemiological characteristics and treatment outcomes. BioScientifica 2003; 5.
Vandeva S, Jaffrain-Rea ML, Daly AF, et al. The genetics of pituitary adenomas. Best Practice & Research Clinical Endocrinology & Metabolism 2010; 24(3): 461-476.
Schneider HJ, Sievers C, Saller B, et al. High prevalence of biochemical acromegaly in primary care patients with elevated IGF‐1 levels. Clinical endocrinology 2008; 69(3): 432-435.
Sesmilo G. Epidemiología de la acromegalia en España. Endocrinología y Nutrición 2013; 60(8): 470-474.
Adelman DT, Liebert KJ, Nachtigall LB, et al. Acromegaly: the disease, its impact on patients, and managing the burden of long-term treatment. International journal of general medicine 2013; 6: 31.
Vandeva S, Elenkova A, Natchev E, et al. Epidemiological variations of aggressive growth hormone-secreting adenomas. International Journal of Endocrine Oncology 2016; 3(3): 245-257.
Vandeva S, Andreeva M, Orbetsova M, et al. Acromegaly in Bulgaria–epidemiological characteristics derived from the National Acromegaly Database. Endocrinolgia 2010; 15(3): 142-150.
Elenkova A, Аtanasova I, Кirilov G, et al. Autoimmune hypothyroidism is three times more frequent in female prolactinoma patients compared to healthy women: data from a cross-sectional case-control study. Endocrine 2017; 57(3): 486-493.
Katznelson L, Laws ER, Melmed S, et al. Acromegaly: an endocrine society clinical practice guideline. The Journal of Clinical Endocrinology & Metabolism 2014; 99(11): 3933-3951.
Въндева С, Начев Е, Захариева С. Качество на живот при пациенти с акромегалия.Наука Ендокринология 2010; 2: 92-93.
Webb SM, Badia X. Quality of life in acromegaly. Neuroendocrinology 2016; 103(1):106-111.
Ben-Shlomo A, Sheppard MC, Stephens JM, et al. Clinical, quality of life, and economic value of acromegaly disease control. Pituitary 2011; 14(3): 284-294.
Badia X, Webb SM, Prieto L, Lara N. Acromegaly quality of life questionnaire. Health Qual Life Outcomes 2004; 2:13.
Gurel M H, Bruening PR, Rhodes C, Lomax KG. Patient perspectives on the impact of acromegaly: results from individual and group interviews. Patient preference and adherence 2014; 8: 53.
Vandeva S, Elenkova A, Natchev E, et al. Treatment outcome results from the Bulgarian Acromegaly Database: adjuvant dopamine agonist therapy is efficient in less than one fifth of non-irradiated patients. Experimental and Clinical Endocrinology & Diabetes 2015; 123 (1): 66-71.
Wassenaar MJ, Biermasz NR, Kloppenburg M, et al. Clinical osteoarthritis predicts physical and psychological QoL in acromegaly patients. Growth Hormone & IGF Research 2010; 20(3): 226-233.
Miller A, Doll H, David J, Wass J. Impact of musculoskeletal disease on quality of life in long-standing acromegaly. European Journal of Endocrinology 2008; 158(5): 587-593.
Andela CD, Scharloo M, Pereira AM, et al. Quality of life (QoL) impairments in patients with a pituitary adenoma: a systematic review of QoL studies. Pituitary 2015; 18(5): 752-776.
Trepp R, Everts R, Stettler C, et al. Assessment of quality of life in patients with uncontrolled versus controlled acromegaly using the acromegaly quality of life questionnaire. Clin Endocrinol 2005; 63:103–110.
Published
2019-07-30
How to Cite
1.
Левтерова Б. Акромегалия – епидемиологични данни и въздействие върху качество на живот на пациентите. Редки болести и лекарства сираци [Internet]. 2019Jul.30 [cited 2024Dec.21];10(2):5-. Available from: https://journal.raredis.org/index.php/RBLS/article/view/69
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