Understanding the growth hormone therapy adherence paradigm: A systematic review

Hormone Research in Paediatrics

Volumn 79, Issue 4, 2013, Pages 189-196

  Fisher, Benjamin G ^a   Acerini, Carlo L ^a,b  

^a UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^b CAMBRIDGE UNIVERSITY HOSPITALS NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

Growth hormone therapy; Patient compliance; Serum insulin like growth factor I

Indexed keywords

GROWTH HORMONE; HUMAN GROWTH HORMONE; RECOMBINANT PROTEIN; SOMATOMEDIN C;

ASTHMA; DECISION MAKING; ECONOMICS; FEASIBILITY STUDY; GOLD STANDARD; HEALTH CARE COST; HORMONAL THERAPY; HUMAN; MEDLINE; OBSERVATIONAL STUDY; PATIENT COMPLIANCE; PATIENT SATISFACTION; PRESCRIPTION; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; RANDOMIZED CONTROLLED TRIAL (TOPIC); REVIEW; SELF REPORT; SMALL FOR DATE INFANT; SOCIAL STATUS; SYSTEMATIC REVIEW; TREATMENT DURATION; TUNICA ALBUGINEA; BODY HEIGHT; GROWTH DISORDERS; SUBCUTANEOUS DRUG ADMINISTRATION;

BODY HEIGHT; CHOICE BEHAVIOR; GROWTH DISORDERS; HUMAN GROWTH HORMONE; HUMANS; INJECTIONS, SUBCUTANEOUS; INSULIN-LIKE GROWTH FACTOR I; PATIENT COMPLIANCE; RECOMBINANT PROTEINS;

EID: 84876782842     PISSN: 16632818     EISSN: 16632826     Source Type: Journal    
DOI: 10.1159/000350251     Document Type: Review

References (76)

1. Raben MS: Treatment of a pituitary dwarf with human growth hormone. J Clin Endocrinol Metab 1958; 18: 901-903.
2. Hintz RL: Growth hormone: uses and abuses. BMJ 2004; 328: 907-908.
3. National Institute for Health and Clinical Excellence: NICE technology appraisal guidance 188: human growth hormone (somatropin) for the treatment of growth failure in children 2010. (review). http://guidance.nice.org.uk/TA188 (accessed October 27, 2012).
4. Takeda A, Cooper K, Bird A, Baxter L, Frampton GK, Gospodarevskaya E, et al: Recombinant human growth hormone for the treatment of growth disorders in children: a systematic review and economic evaluation. Health Technol Assess (Winch Eng) 2010; 14: 1-209.
5. Kirk J: Indications for growth hormone therapy in children. Arch Dis Child 2012; 97: 63-68.
6. Radovick S, DiVall S: Approach to the growth hormone-deficient child during transition to adulthood. J Clin Endocrinol Metab 2007; 92: 1195-1200.
7. Bissonnette JM: Adherence: a concept analysis. J Adv Nurs 2008; 63: 634-643.
8. World Health Organisation: Adherence to long-term therapies: evidence for action 2003. http://www.who.int/chp/knowledge/publications/adherence-report/en
9. Haynes RB, Taylor DW, Sackett DL: Compliance in Health Care. Baltimore, John Hopkins, 1979.
10. Hindmarsh PC, Brook CG: Compliance with growth hormone treatment-is it a problem? Horm Res 1999; 51(suppl 3):104-108.
11. Osterberg L, Blaschke T: Adherence to medication. N Engl J Med 2005 Aug 4; 353: 487-497.
12. O'Hanrahan M, O'Malley K: Compliance with drug treatment. BMJ 1981; 283: 298-300.
13. Matsui DM: Drug compliance in pediatrics: clinical and research issues. Pediatr Clin North Am 1997; 44: 1-14.
14. DiMatteo MR: Variations in patients' adherence to medical recommendations: a quantitative review of 50 years of research. Med Care 2004; 42: 200-209.
15. Staples B, Bravender T: Drug compliance in adolescents: assessing and managing modifiable risk factors. Paediatr Drugs 2002; 4: 503-513.
16. Tebbi CK: Treatment compliance in childhood and adolescence. Cancer 1993; 71: 3441-3449.
17. DiMatteo MR, Giordani PJ, Lepper HS, Croghan TW: Patient adherence and medical treatment outcomes: a meta-analysis. Med Care 2002; 40: 794-811.
18. Svarstad BL, Chewning BA, Sleath BL, Claesson C: The Brief Medication Questionnaire: a tool for screening patient adherence and barriers to adherence. Patient Educ Couns 1999; 37: 113-124.
19. Hunter I, DeVries C, Morris A, MacDonald T, Greene S: Human growth hormone therapy: poor adherence equals poor growth. Arch Dis Child 2000; 82(suppl 1):28.
20. Haverkamp F, Johansson L, Dumas H, Langham S, Tauber M, Veimo D, et al: Observations of nonadherence to recombinant human growth hormone therapy in clinical practice. Clin Ther 2008; 30: 307-316.
21. Kapoor RR, Burke SA, Sparrow SE, Hughes IA, Dunger DB, Ong KK, et al: Monitoring of concordance in growth hormone therapy. Arch Dis Child 2008; 93: 147-48.
22. Steiner JF, Prochazka A V: The assessment of refill compliance using pharmacy records: methods, validity, and applications. J Clin Epidemiol 1997; 50: 105-116.
23. Rickles NM, Svarstad BL: Relationships between multiple self-reported nonadherence measures and pharmacy records. Res Social Adm Pharm 2007; 3: 363-377.
24. Haynes RB, McDonald HP, Garg AX: Helping patients follow prescribed treatment: clinical applications. JAMA 2002; 288: 2880-2883.
25. Phillip M, Chalew SA, Stene MA, Kowarski AA: The value of urinary growth hormone determination for assessment of growth hormone deficiency and compliance with growth hormone therapy. Am J Dis Child 1993; 147: 553-557.
26. Skinner AM, Clayton PE, Addison GM, Price DA: Nocturnal urinary growth hormone excretion in growth hormone-deficient children on and off growth hormone treatment. Horm Res 1995; 44: 147-151.
27. Lee KW, Cohen P: Individualizing growth hormone dosing in children. Horm Res 2001; 56(suppl 1):29-34.
28. Growth Hormone Research Society: Consensus guidelines for the diagnosis and treatment of growth hormone (GH) deficiency in childhood and adolescence: summary statement of the GH Research Society. J Clin Endocrinol Metab 2000; 85: 3990-3993.
29. Cohen P, Rogol AD, Deal CL, Saenger P, Reiter EO, Ross JL, et al: Consensus statement on the diagnosis and treatment of children with idiopathic short stature: a summary of the Growth Hormone Research Society, the Lawson Wilkins Pediatric Endocrine Society, and the European Society for Paediatric Endocrinology Workshop. J Clin Endocrinol Metab 2008; 93: 4210-4217.
30. Bang P, Ahmed SF, Argente J, Backeljauw P, Bettendorf M, Bona G, et al: Identification and management of poor response to growthpromoting therapy in children with short stature. Clin Endocrinol (Oxf) 2012; 77: 169-181.
31. Cutfield WS, Lundgren F: Insulin-like growth factor I and growth responses during the first year of growth hormone treatment in KIGS patients with idiopathic growth hormone deficiency, acquired growth hormone deficiency, Turner syndrome and born small for gestational age. Horm Res 2009; 71(suppl 1):39-45.
32. Cohen P, Rogol AD, Howard CP, Bright GM, Kappelgaard A-M, Rosenfeld RG: Insulin growth factor-based dosing of growth hormone therapy in children: a randomized, controlled study. J Clin Endocrinol Metab 2007; 92: 2480-2486.
33. Wilkins JP, Suman OE, Benjamin DA, Herndon DN: Comparison of self-reported and monitored compliance of daily injection of human growth hormone in burned children. Burns 2003; 29: 697-701.
34. Tillmann V, Patel L, Gill MS, Whatmore AJ, Price DA, Kibirige MS, et al: Monitoring serum insulin-like growth factor-I (IGF-I), IGF binding protein-3 (IGFBP-3), IGF-I/IGFBP-3 molar ratio and leptin during growth hormone treatment for disordered growth. Clin Endocrinol (Oxf) 2000; 53: 329-336.
35. Cohen P, Bright GM, Rogol AD, Kappelgaard A-M, Rosenfeld RG: Effects of dose and gender on the growth and growth factor response to GH in GH-deficient children: implications for efficacy and safety. J Clin Endocrinol Metab 2002; 87: 90-98.
36. Bannink EMN, Van Doorn J, Stijnen T, Drop SLS, De Muinck Keizer-Schrama SMPF: Free dissociable insulin-like growth factor I (IGFI), total IGF-I and their binding proteins in girls with Turner syndrome during long-term growth hormone treatment. Clin Endocrinol (Oxf) 2006; 65: 310-319.
37. Lanes R, Jakubowicz S: Is insulin-like growth factor-1 monitoring useful in assessing the response to growth hormone of growth hormone-deficient children? J Pediatr 2002; 141: 606-610.
38. Johansson J-O, Wiren L, Oscarsson J, Bengtsson B-A, Johannsson G: 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.
39. Amato G, Mazziotti G, Di Somma C, Lalli E, De Felice G, Conte M, 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.
40. Giavoli C, Cappiello V, Porretti S, Ronchi CL, Orsi E, Beck-Peccoz P, et al: Growth hormone therapy in GH-deficient adults: continuous vs. alternate-days treatment. Horm Metab Res 2003; 35: 557-561.
41. Bouhours-Nouet N, Gatelais F, Boux de Casson F, Rouleau S, Coutant R: The insulin-like growth factor-I response to growth hormone is increased in prepubertal children with obesity and tall stature. J Clin Endocrinol Metab 2007; 92: 629-635.
42. Postlethwaite RJ, Eminson DM, Reynolds JM, Wood AJ, Hollis S: Growth in renal failure: a longitudinal study of emotional and behavioural changes during trials of growth hormone treatment. Arch Dis Child 1998; 78: 222-229.
43. Randolph C, Fraser B: Stressors and concerns in teen asthma. Curr Probl Pediatr 1999; 29: 82-93.
44. Verrips GH, Hirasing RA, Fekkes M, Vogels T, Verloove-Vanhorick SP, Delemarre-Van de Waal HA: Psychological responses to the needle-free Medi-Jector or the multidose Disetronic injection pen in human growth hormone therapy. Acta Paediatr 1998; 87: 154-158.
45. Ahmed SF, Smith WA, Blamires C: Facilitating and understanding the family's choice of injection device for growth hormone therapy by using conjoint analysis. Arch Dis Child 2008; 93: 110-114.
46. Wickramasuriya BPN, Casey A, Akhtar S, Zia R, Ehtisham S, Barrett TG, et al: Factors determining patient choice of device for GH therapy. Horm Res 2006; 65: 18-22.
47. Langham S, Kirk J: National audit of patient choice in pediatric GH therapy. Horm Res 2011; 75: 101-105.
48. National Institute for Health and Clinical Excellence: NICE clinical guideline 76: medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence 2009. http://guidance.nice. org.uk/CG76
49. Smith SL, Hindmarsh PC, Brook CG: Compliance with growth hormone treatment-are they getting it? Arch Dis Child 1995; 73: 277.
50. Kyngas H, Rissanen M: Support as a crucial predictor of good compliance of adolescents with a chronic disease. J Clin Nurs 2001; 10: 767-774.
51. Oyarzabal M, Aliaga M, Chueca M, Echarte G, Ulied A: Multicentre survey on compliance with growth hormone therapy: what can be improved? Acta Paediatr 1998; 87: 387-391.
52. Fisher BG, Gorman S, Reyes K, Sparrow S, Acerini CL: A survey of patient/carer opinions and preferences on choice of GH injection device. Endocr Abstr 2011; 27:P9.
53. Cutfield WS, Derraik JGB, Gunn AJ, Reid K, Delany T, Robinson E, et al: Non-compliance with growth hormone treatment in children is common and impairs linear growth. PLoS One 2011; 6:e16223.
54. Desrosiers P, O'Brien F, Blethen S: Patient outcomes in the GH Monitor: the effect of delivery device on compliance and growth. Pediatr Endocrinol Rev 2005; 2(suppl 3):327-331.
55. Varni JW, Seid M, Rode CA: The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999; 37: 126-139.
56. Bannink EMN, Van Pareren YK, Theunissen NCM, Raat H, Mulder PGM, Hokken-Koelega ACS: Quality of life in adolescents born small for gestational age: does growth hormone make a difference? Horm Res 2005; 64: 166-174.
57. Murray RD, Skillicorn CJ, Howell SJ, Lissett CA, Rahim A, Shalet SM: Dose titration and patient selection increases the efficacy of GH replacement in severely GH deficient adults. Clin Endocrinol (Oxf) 1999; 50: 749-757.
58. Brutt AL, Sandberg DE, Chaplin J, Wollmann H, Noeker M, Kołtowska-Haggstrom M, et al: Assessment of health-related quality of life and patient satisfaction in children and adolescents with growth hormone deficiency or idiopathic short stature. Part 1. A critical evaluation of available tools. Horm Res 2009; 72: 65-73.
59. Persico N, Postlewaite A, Silverman D: The effect of adolescent experience on labor market outcomes: the case of height. J Polit Econ 2004; 112: 1019-1053.
60. Lustig RH: Optimizing growth hormone efficacy: an evidence-based analysis. Horm Res 2004; 62(suppl 3):93-97.
61. Roter DL, Hall JA, Merisca R, Nordstrom B, Cretin D, Svarstad B: Effectiveness of interventions to improve patient compliance: a meta-analysis. Med Care 1998; 36: 1138-1161.
62. Cvengros JA, Christensen AJ, Cunningham C, Hillis SL, Kaboli PJ: Patient preference for and reports of provider behavior: impact of symmetry on patient outcomes. Health Psychol 2009; 28: 660-667.
63. Smith SL, Hindmarsh PC, Brook CG: Compliance with growth hormone treatment-are they getting it? Arch Dis Child 1993; 68: 91-93.
64. Stanhope R, Moyle L, MacSwiney M: Patient knowledge and compliance with growth hormone treatment. Arch Dis Child 1993; 68: 525.
65. Rees L: Compliance with growth hormone therapy in chronic renal failure and post transplant. Pediatr Nephrol 1997; 11: 752-754.
66. Rosenfeld RG, Bakker B: Compliance and persistence in pediatric and adult patients receiving growth hormone therapy. Endocr Pract 2008; 14: 143-154.
67. Gacs G, Hosszu E: The effect of socio-economic conditions on the time of diagnosis and compliance during treatment in growth hormone deficiency. Acta Paediatr Hung 1991; 31: 215-221.
68. Kirk J, Akhtar S, Zia R PM: Home delivery with hospital tracking improves GH compliance. Horm Res 2002; 58(suppl 2):P2-P382.
69. Leiberman E, Pilpel D, Carel CA, Levi E, Zadik Z: Coping and satisfaction with growth hormone treatment among short-stature children. Horm Res 1993; 40: 128-135.
70. Stanhope R, Albanese A, Moyle L, Hamill G: Optimum method for administration of biosynthetic human growth hormone: a randomised crossover trial of an Auto Injector and a pen injection system. Arch Dis Child 1992; 67: 994-997.
71. Muller J, Skakkebaek NE, Jacobsen BB, Keller E, Heinrich U, Hartmann K, et al: Norditropin SimpleXx: a liquid human growth hormone formulation, a pen system and an autoinsertion device. Horm Res 1999; 51(suppl 3):109-112.
72. Jorgensen JT: Improvement of patient convenience in treatment with growth hormone. J Pediatr Endocrinol 1994; 7: 175-180.
73. Dumas H, Panayiotopoulos P, Parker D, Pongpairochana V: Understanding and meeting the needs of those using growth hormone injection devices. BMC Endocr Disord 2006; 6: 5.
74. Norgren S: Adherence remains a challenge for patients receiving growth hormone therapy. Pediatr Endocrinol Rev 2009; 6(suppl 4):545-548.
75. Lopez Siguero JP, Martinez Aedo MJ, Lopez Moreno MD, Martinez Valverde A: Treatment with growth hormone: what do children know and how do they accept it? Horm Res 1995; 44(suppl 3):18-25.
76. Johannsson G: Long-acting growth hormone for replacement therapy. J Clin Endocrinol Metab 2011; 96: 1668-1670.