Adherence, Attitudes and Beliefs of Growth Hormone Deficient Patients – A Questionnaire-based Cohort Study
Felix Amereller
1
Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, München, Germany
,
Katharina Schilbach
1
Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, München, Germany
,
Jochen Schopohl
1
Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, München, Germany
,
Sylvère Störmann
1
Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, München, Germany
› Author AffiliationsFunding: JS has received lecture fees honoraria and grants from Novartis, Ipsen and Pfizer and grants from Chiasma and OPKO Health. He is also a consultant for Ipsen and Novartis. SS has received lecture fees honoraria and grants from Novartis, Ipsen and Pfizer.
Introduction GHD is a chronic and systemic disease requiring daily replacement of growth hormone (GHRT). Adherence and attitudes of adult GHD patients are not well known. We sought to assess patients’ knowledge of growth hormone deficiency (GHD) in association with treatment adherence and attitudes regarding available and upcoming treatment options.
Methods We performed a cross-sectional survey with a custom-made questionnaire at a single centre assessing data on demographics, knowledge of GHD, adherence and attitudes towards GHRT.
Results Of 106 eligible patients actively followed for GHD 70 returned the completed survey (return-rate 66%, 34 m/36 f; age 56±14 years). 46 patients were actively treated, but almost one third (n=24) refused GHRT. 12 patients had participated in clinical trials with LAGH (long-acting growth hormone). Overall, patients with GHRT showed good adherence. Patients refusing GHRT mostly feared side effects and/or had a lack of information/perceived effect. Disease knowledge and level of education were higher in treated than untreated patients (p=0.023/0.017). Only 36% of respondents would initiate treatment with LAGH. Patients with prior LAGH experience and patients with childhood-onset GHD were more likely to adopt LAGH (p=0.048/0.031).
Discussion Most often, misinformation causes patients to refuse GHRT. Possibly the understanding of their condition and consequences of non-treatment is limited. To improve adherence more focused educational and behavioural strategies may be needed. Willingness to begin a therapy with LAGH was lower than expected (36%). The reasons for reluctance against LAGH need to be elucidated.
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References
1
Lin E,
Wexler TL,
Nachtigall L.
et al. Effects of growth hormone deficiency on body composition and biomarkers of cardiovascular risk after definitive therapy for acromegaly. Clin Endocrinol (Oxf) 2012; 77: 430-438
5
Elbornsson M,
Horvath A,
Götherström G.
et al. Seven years of growth hormone (GH) replacement improves quality of life in hypopituitary patients with adult-onset GH deficiency. Eur J Endocrinol 2017; 176: 99-109
6
Ho KK.
Consensus guidelines for the diagnosis and treatment of adults with GH deficiency II: A statement of the GH Research Society in association with the European Society for Pediatric Endocrinology, Lawson Wilkins Society, European Society of Endocrinology, J. Eur J Endocrinol 2007; 157: 695-700
8
Cutfield WS,
Derraik JGB,
Gunn AJ.
et al. Non-compliance with growth hormone treatment in children is common and impairs linear growth. PLoS One 2011; 6: 5-7
10
Hartmann K,
Ittner J,
Müller-Rossberg E.
et al. Growth hormone treatment adherence in prepubertal and pubertal children with different growth disorders. Horm Res Paediatr 2013; 80: 1-5
11
Haverkamp F,
Johansson L,
Dumas H.
et al. Observations of nonadherence to recombinant human growth hormone therapy in clinical practice. Clin Ther 2008; 30: 307-316
13
Oyarzabal M,
Aliaga M,
Chueca M.
et al. Multicentre survey on compliance with growth hormone therapy: What can be improved?. Acta Paediatr Int J Paediatr 1998; 87: 387-391
16
Zaninelli DCT,
Meister LHF,
Radominski RB.
et al. Eficácia, segurança e aderência ao tratamento de longo prazo com hormônio de crescimento (GH) em adultos com deficiência de GH. Arq Bras Endocrinol Metabol 2008; 52: 879-888
17
Giavoli C,
Cappiello V,
Porretti S.
et al. Growth hormone therapy in GH-deficient adults: Continuous vs. alternate-days treatment. Horm Metab Res 2003; 35: 557-561
18
Amato G,
Mazziotti G,
Di Somma C.
et al. Recombinant Growth Hormone (GH) Therapy in GH-deficient adults: A long-term controlled study on daily versus thrice weekly injections. J Clin Endocrinol Metab 2000; 85: 3720-3725
19
Johansson JO,
Wirén L,
Oscarsson J.
et al. Growth hormone (GH) replacement in GH-deficient adults: A crossover trial comparing the effect on metabolic control, well-being and compliance of three injections per week versus daily injections. Growth Horm IGF Res 2003; 13: 306-315
21
Abdi L,
Sahnoun-Fathallah M,
Morange I.
et al. A monocentric experience of growth hormone replacement therapy in adult patients. Ann Endocrinol (Paris) 2014; 75: 176-183
22
Christiansen JS,
Backeljauw PF,
Bidlingmaier M.
et al. Growth Hormone Research Society perspective on the development of long-acting growth hormone preparations. Eur J Endocrinol 2016; 174: C1-C8
23
Auer MK,
Stieg MR,
Hoffmann J.
et al.
et al. Is Insulin-like-growth-factor-I a good marker for treatment adherence in growth-hormone deficiency in adulthood?. Clin Endocrinol (Oxf) 2016; 84: 862-869
26
Morisky DE,
Ang A,
Krousel-Wood M.
et al. Predictive validity of a medication adherence measure in an outpatient setting. J Clin Hypertens 2008; 10: 348-354
27
Kim MT,
Hill MN,
Bone LR.
et al. Development and testing of the Hill-Bone compliance to high blood pressure therapy scale. Prog Cardiovasc Nurs 2000; 15: 90-96
28
Thompson K,
Kulkarni J,
Sergejew AA.
Reliability and validity of a new Medication Adherence Rating Scale (MARS) for the psychoses. Schizophr Res 2000; 42: 241-247
31
Acerini CL,
Wac K,
Bang P.
et al. Optimizing patient management and adherence for children receiving growth hormone. Front Endocrinol (Lausanne) 2017; 8: 1-6
32
Vermiere E,
Hearnshaw H,
Van Royen PD.
Patient Adherence to Treatment: Three decades of research: A comprehensive review. J Clin Pharm Ther 2001; 26: 331-342
33
Joosten EAG,
DeFuentes-Merillas L,
de Weert GH.
et al. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychother Psychosom 2008; 77: 219-226
34
Recker RR,
Gallagher R,
MacCosbe PE.
Effect of dosing frequency on bisphosphonate medication adherence in a large longitudinal cohort of women. Mayo Clin Proc 2005; 80: 856-861
35
Cramer J,
Lynch N,
Gaudin A.
et al. The effect of dosing frequency on compliance and persistence with bisphosphonate therapy in postmenopausal women: A comparison of studies in the United States, the United Kingdom. Clin Ther 2006; 28: 1686-1694
36
Bartl R,
Götte S,
Hadji P.
et al. Adhärenz mit täglichen und wöchentlichen oralen bisphosphonaten in der osteoporosetherapie. Dtsch Medizinische Wochenschrift 2006; 131: 1257-1262
