, Volume 16, Issue 2, pp 245–250 | Cite as

Acromegalic patients lost to follow-up: a pilot study

  • Leandro Kasuki
  • Nelma Verônica Marques
  • Maria José Braga La Nuez
  • Vera Lucia Gomes Leal
  • Renata N. Chinen
  • Mônica R. Gadelha


Approximately 50 % of all acromegalic patients will require lifelong medical treatment to normalize mortality rates and reduce morbidity. Thus, adherence to therapy is essential to achieve treatment goals. To date, no study has evaluated the frequency and reasons for loss to follow-up in the acromegalic population. The current study aimed at evaluating the frequency of acromegalic patient loss to follow-up in three reference centers and the reasons responsible for their low compliance with treatment. All of the files for the acromegalic patients in the three centers were reviewed. Those patients, who had not followed up with the hospital for more than a year, were contacted via phone and/or mail and invited to participate. Patients who agreed to participate were interviewed, and blood samples were collected. A total of 239 files were reviewed; from these 42 patients (17.6 %) were identified who were lost to follow-up. It was possible to contact 27 of these patients, 10 of whom did not attend the appointments for more than one time and 17 of whom agreed to participate in the study. Fifteen of these 17 patients had active disease (88.2 %), and all of the patients restarted treatment in the original centers. The main reason for loss to follow-up was an absence of symptoms. High-quality follow-up is important in acromegaly to successfully achieve the aims of the treatment. An active search for patients may allow the resumption of treatment in a significant proportion of these cases, contributing to reduced morbidity and mortality in this patient population.


Acromegaly Compliance Follow-up Chronic disease 



This work is supported by a grant from Novartis Biociências S.A.

Conflict of interest

MRG received grant support from Novartis Biociências S.A and Pfizer and speaker fees from Novartis Biociências, Pfizer and Ipsen. RNC is an employee of Novartis Biociências S.A in Brazil.

Ethical standards

The authors declare that this study complies with the current laws of Brazil.


  1. 1.
    Melmed S (2006) Medical progress: acromegaly. N Engl J Med 355(24):2558–2573PubMedCrossRefGoogle Scholar
  2. 2.
    Holdaway IM, Bolland MJ, Gamble GD (2008) A meta-analysis of the effect of lowering serum levels of GH and IGF-I on mortality in acromegaly. Eur J Endocrinol 159(2):89–95PubMedCrossRefGoogle Scholar
  3. 3.
    Melmed S, Colao A, Barkan A, Molitch M, Grossman AB, Kleinberg D, Clemmons D, Chanson P, Laws E, Schlechte J, Vance ML, Ho K, Giustina A (2009) Guidelines for acromegaly management: an update. J Clin Endocrinol Metab 94(5):1509–1517PubMedCrossRefGoogle Scholar
  4. 4.
    Vieira Neto L, Abucham J, Araujo LA, Boguszewski CL, Bronstein MD, Czepielewski M, Jallad RS, Musolino NR, Naves LA, Ribeiro-Oliveira A Junior, Ribeiro-Oliveira A Jr, Vilar L, Faria Mdos S, Gadelha MR (2011) Recommendations of Neuroendocrinology Department from Brazilian Society of Endocrinology and Metabolism for diagnosis and treatment of acromegaly in Brazil. Arq Bras Endocrinol Metabol 55(2):91–105PubMedCrossRefGoogle Scholar
  5. 5.
    Nomikos P, Buchfelder M, Fahlbusch R (2005) The outcome of surgery in 668 patients with acromegaly using current criteria of biochemical ‘cure’. Eur J Endocrinol 152(3):379–387PubMedCrossRefGoogle Scholar
  6. 6.
    Giustina A, Chanson P, Bronstein MD, Klibanski A, Lamberts S, Casanueva FF, Trainer P, Ghigo E, Ho K, Melmed S (2010) A consensus on criteria for cure of acromegaly. J Clin Endocrinol Metab 95(7):3141–3148PubMedCrossRefGoogle Scholar
  7. 7.
    Carmichael JD, Bonert VS, Mirocha JM, Melmed S (2009) The utility of oral glucose tolerance testing for diagnosis and assessment of treatment outcomes in 166 patients with acromegaly. J Clin Endocrinol Metab 94(2):523–527PubMedCrossRefGoogle Scholar
  8. 8.
    Ayuk J, Stewart PM (2009) Mortality following pituitary radiotherapy. Pituitary 12(1):35–39PubMedCrossRefGoogle Scholar
  9. 9.
    Barkan A, Bronstein MD, Bruno OD, Cob A, Espinosa-de-los-Monteros AL, Gadelha MR, Garavito G, Guitelman M, Mangupli R, Mercado M, Portocarrero L, Sheppard M (2010) Management of acromegaly in Latin America: expert panel recommendations. Pituitary 13(2):168–175PubMedCrossRefGoogle Scholar
  10. 10.
    Freda PU, Katznelson L, van der Lely AJ, Reyes CM, Zhao S, Rabinowitz D (2005) Long-acting somatostatin analog therapy of acromegaly: a meta-analysis. J Clin Endocrinol Metab 90(8):4465–4473PubMedCrossRefGoogle Scholar
  11. 11.
    Murray RD, Melmed S (2008) A critical analysis of clinically available somatostatin analog formulations for therapy of acromegaly. J Clin Endocrinol Metab 93(8):2957–2968PubMedCrossRefGoogle Scholar
  12. 12.
    Tutuncu, Y., Berker, D., Isik, S., Ozuguz, U., Akbaba, G., Kucukler, F.K., Aydin, Y., Guler, S.: Comparison of octreotide LAR and lanreotide autogel as post-operative medical treatment in acromegaly. Pituitary Aug 25 Epub ahead of print (2011)Google Scholar
  13. 13.
    Ramirez C, Vargas G, Gonzalez B, Grossman A, Rabago J, Sosa E, Espinosa-de-Los-Monteros AL, Mercado M (2012) Discontinuation of octreotide LAR after long term, successful treatment of patients with acromegaly: is it worth trying? Eur J Endocrinol 166(1):21–26PubMedCrossRefGoogle Scholar
  14. 14.
    Ronchi CL, Rizzo E, Lania AG, Pivonello R, Grottoli S, Colao A, Ghigo E, Spada A, Arosio M, Beck-Peccoz P (2008) Preliminary data on biochemical remission of acromegaly after somatostatin analogs withdrawal. Eur J Endocrinol 158(1):19–25PubMedCrossRefGoogle Scholar
  15. 15.
    Freda PU, Reyes CM, Nuruzzaman AT, Sundeen RE, Khandji AG, Post KD (2004) Cabergoline therapy of growth hormone & growth hormone/prolactin secreting pituitary tumors. Pituitary 7(1):21–30PubMedCrossRefGoogle Scholar
  16. 16.
    Sandret L, Maison P, Chanson P (2011) Place of cabergoline in acromegaly: a meta-analysis. J Clin Endocrinol Metab 96(5):1327–1335PubMedCrossRefGoogle Scholar
  17. 17.
    Vilar L, Azevedo MF, Naves LA, Casulari LA, Albuquerque JL, Montenegro RM, Montenegro RM Jr, Figueiredo P, Nascimento GC, Faria MS (2011) Role of the addition of cabergoline to the management of acromegalic patients resistant to longterm treatment with octreotide LAR. Pituitary 14(2):148–156PubMedCrossRefGoogle Scholar
  18. 18.
    Verhelst JA, Abrams PJ, Abs R (2008) Remission of acromegaly following long-term therapy with cabergoline: report of two cases. Pituitary 11(1):103–107PubMedCrossRefGoogle Scholar
  19. 19.
    Trainer PJ (2009) ACROSTUDY: the first 5 years. Eur J Endocrinol 161(Suppl 1):S19–S24PubMedCrossRefGoogle Scholar
  20. 20.
    Trainer PJ, Drake WM, Katznelson L, Freda PU, Herman-Bonert V, van der Lely AJ, Dimaraki EV, Stewart PM, Friend KE, Vance ML, Besser GM, Scarlett JA, Thorner MO, Parkinson C, Klibanski A, Powell JS, Barkan AL, Sheppard MC, Malsonado M, Rose DR, Clemmons DR, Johannsson G, Bengtsson BA, Stavrou S, Kleinberg DL, Cook DM, Phillips LS, Bidlingmaier M, Strasburger CJ, Hackett S, Zib K, Bennett WF, Davis RJ (2000) Treatment of acromegaly with the growth hormone-receptor antagonist pegvisomant. N Engl J Med 342(16):1171–1177PubMedCrossRefGoogle Scholar
  21. 21.
    Neggers SJ, van der Lely AJ (2011) Combination treatment with somatostatin analogues and pegvisomant in acromegaly. Growth Horm IGF Res 21(3):129–133PubMedCrossRefGoogle Scholar
  22. 22.
    Muller, R., Kallikorm, R., Polluste, K., Lember, M.: Compliance with treatment of rheumatoid arthritis. Rheumatol Int Sep 29 Epub ahead of print (2011)Google Scholar
  23. 23.
    Gold DT (2006) Medication adherence: a challenge for patients with postmenopausal osteoporosis and other chronic illnesses. J Manag Care Pharm 12(6 Suppl A):S20–S25PubMedGoogle Scholar
  24. 24.
    Bex M, Abs R, T’Sjoen G, Mockel J, Velkeniers B, Muermans K, Maiter D (2007) AcroBel–the Belgian registry on acromegaly: a survey of the ‘real-life’ outcome in 418 acromegalic subjects. Eur J Endocrinol 157(4):399–409PubMedCrossRefGoogle Scholar
  25. 25.
    Mestron A, Webb SM, Astorga R, Benito P, Catala M, Gaztambide S, Gomez JM, Halperin I, Lucas-Morante T, Moreno B, Obiols G, de Pablos P, Paramo C, Pico A, Torres E, Varela C, Vazquez JA, Zamora J, Albareda M, Gilabert M (2004) Epidemiology, clinical characteristics, outcome, morbidity and mortality in acromegaly based on the Spanish Acromegaly Registry (Registro Espanol de Acromegalia, REA). Eur J Endocrinol 151(4):439–446PubMedCrossRefGoogle Scholar
  26. 26.
    Attanasio R, Montini M, Valota M, Cortesi L, Barbo R, Biroli F, Tonnarelli G, Albizzi M, Testa RM, Pagani G (2008) An audit of treatment outcome in acromegalic patients attending our center at Bergamo. Italy Pituitary 11(1):1–11CrossRefGoogle Scholar
  27. 27.
    Neutel JM, Smith DH (2003) Improving patient compliance: a major goal in the management of hypertension. J Clin Hypertens (Greenwich) 5(2):127–132CrossRefGoogle Scholar
  28. 28.
    Colao A, Ferone D, Marzullo P, Lombardi G (2004) Systemic complications of acromegaly: epidemiology, pathogenesis, and management. Endocr Rev 25(1):102–152PubMedCrossRefGoogle Scholar
  29. 29.
    Kripalani S, Yao X, Haynes RB (2007) Interventions to enhance medication adherence in chronic medical conditions: a systematic review. Arch Intern Med 167(6):540–550PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2012

Authors and Affiliations

  • Leandro Kasuki
    • 1
    • 2
  • Nelma Verônica Marques
    • 1
  • Maria José Braga La Nuez
    • 2
  • Vera Lucia Gomes Leal
    • 3
  • Renata N. Chinen
    • 4
  • Mônica R. Gadelha
    • 1
    • 5
  1. 1.Endocrinology Unit, Clementino Fraga Filho University HospitalFederal University of Rio de JaneiroRio de JaneiroBrazil
  2. 2.Endocrinology UnitBonsucesso Federal HospitalRio de JanerioBrazil
  3. 3.Endocrinology UnitState Institute of Diabetes and EndocrinologyRio de JaneiroBrazil
  4. 4.Novartis Biociências S.ASão PauloBrazil
  5. 5.Neuroendocrinology Research CenterRio de JaneiroBrazil

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