Bridging the gap: Metabolic and endocrine care of patients during transition

Endocrine Connections

Volumn 5, Issue 6, 2016, Pages R44-R54

  Hokken Koelega, Anita ^a   Van Der Lely, Aart Jan ^a   Hauffa, Berthold ^b   Häusler, Gabriele ^c   Johannsson, Gudmundur ^d   Maghnie, Mohamad ^e   Argente, Jesús ^f   DeSchepper, Jean ^g   Gleeson, Helena ^h   Gregory, John W ⁱ   Höybye, Charlotte ^j   Keleştimur, Fahrettin ^k   Luger, Anton ^d   Müller, Hermann L ^l   Neggers, Sebastian ^b   Popovic Brkic, Vera ^m   Porcu, Eleonora ⁿ   Sävendahl, Lars ^j   Shalet, Stephen ^o   Spiliotis, Bessie ^p   Tauber, Maithé ^q   more..

^a ERASMUS MEDICAL CENTER   (Netherlands)

^b UNIVERSITY HOSPITAL ESSEN   (Germany)

^c MEDICAL UNIVERSITY OF VIENNA   (Austria)

^d SAHLGRENSKA UNIVERSITY HOSPITAL   (Sweden)

^e UNIVERSITY OF GENOA   (Italy)

^f HOSPITAL INFANTIL UNIVERSITARIO NIÑO JESÚS   (Spain)

^g UNIVERSITY HOSPITAL BRUSSELS   (Belgium)

^h QUEEN ELIZABETH HOSPITAL   (United Kingdom)

ⁱ CARDIFF UNIVERSITY SCHOOL OF MEDICINE   (United Kingdom)

^j KAROLINSKA UNIVERSITY HOSPITAL   (Sweden)

^k ERCIYES UNIVERSITY   (Turkey)

^l UNIVERSITY OF OLDENBURG   (Germany)

^m UNIVERSITY OF BELGRADE   (Serbia)

ⁿ UNIVERSITY OF BOLOGNA   (Italy)

^o CHRISTIE HOSPITAL   (United Kingdom)

^p UNIVERSITY OF PATRAS   (Greece)

^q HÔPITAL DES ENFANTS   (France)

more..

Author keywords

Developmentally appropriate healthcare; GH therapy; Metabolic syndrome; Quality of life; Transition

Indexed keywords

GROWTH HORMONE;

ADOLESCENT; ADULT; BLOOD PRESSURE MONITORING; BODY COMPOSITION; BODY MASS; BONE DENSITOMETRY; CANCER SURVIVOR; CHILD; CRANIOPHARYNGIOMA; CRYOPRESERVATION; ENDOCRINE DISEASE; ENDOCRINOLOGIST; EVALUATION AND FOLLOW UP; FEMALE; GENERAL PRACTITIONER; GESTATIONAL AGE; HORMONE DEFICIENCY; HUMAN; MAJOR CLINICAL STUDY; MALE; METABOLIC ACTIVATION; OBESITY; OSTEOPOROSIS; PRIORITY JOURNAL; PSYCHOLOGIST; REVIEW; SCHOOL CHILD; TRANSITIONAL CARE; TREATMENT OUTCOME; YOUNG ADULT;

EID: 85031320520     PISSN: None     EISSN: 20493614     Source Type: Journal    
DOI: 10.1530/EC-16-0028     Document Type: Review

References (44)

1. Merrick H, McConachie H, Le Couteur A, Mann K, Parr JR, Pearce MS, Colver A & Transition Collaborative Group. Characteristics of young people with long term conditions close to transfer to adult health services. BMC Health Services Research 2015 15 435. (doi:10.1186/s12913-015-1095-6)
2. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP & Slap GB. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. Journal of Adolescent Health 1993 14 570-576. (doi:10.1016/1054-139X(93)90143-D)
3. Lugasi T, Achille M & Stevenson M. Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. Journal of Adolescent Health 2011 48 429-440. (doi:10.1016/j.jadohealth.2010.10.016)
4. Sebastian S, Jenkins H, McCartney S, Ahmad T, Arnott I, Croft N, Russell R & Lindsay JO. The requirements and barriers to successful transition of adolescents with inflammatory bowel disease: differing perceptions from a survey of adult and paediatric gastroenterologists. Journal of Crohn’s and Colitis 2012 6 830-844. (doi:10.1016/j.crohns.2012.01.010)
5. Kime N. Young people with type 1 diabetes and their transition to adult services. British Journal of Community Nursing 2013 18 14, 16-18. (doi:10.12968/bjcn.2013.18.1.14)
6. McDonagh JE. Transition of care from paediatric to adult rheumatology. Archives of Disease in Childhood 2007 92 802-807. (doi:10.1136/adc.2006.103796)
7. Transition to Adult Care: Ready Steady Go. (available at: http://www.uhs.nhs.uk/OurServices/Childhealth/TransitiontoadultcareReadySteadyGo/Transitiontoadultcare.aspx). Accessed on 9 December 2015.
8. Gleeson H, Davis J, Jones J, O’Shea E & Clayton PE. The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: experience in a single centre over 18 years. Clinical Endocrinology 2013 78 23-28. (doi:10.1111/cen.12053)
9. Prior M, McManus M, White P & Davidson L Measuring the ‘triple aim’ in transition care: a systematic review. Pediatrics 2014 134 e1648-e1661. (doi:10.1542/peds.2014-1704)
10. Huang JS, Terrones L, Tompane T, Dillon L, Pian M, Gottschalk M, Norman GJ & Bartholomew LK Preparing adolescents with chronic disease for transition to adult care: a technology program. Pediatrics 2014 133 e1639-e1646. (doi:10.1542/peds.2013-2830)
11. Clayton PE, Cuneo RC, Juul A, Monson JP, Shalet SM, Tauber M & European Society of Paediatric Endocrinology. Consensus statement on the management of the GH-treated adolescent in the transition to adult care. European Journal of Endocrinology 2005 152 165-170. (doi:10.1530/eje.1.01829)
12. 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, Japan Endocrine Society, and Endocrine Society of Australia. European Journal of Endocrinology 2007 157 695-700. (doi:10.1530/EJE-07-0631)
13. Allen DB, Backeljauw P, Bidlingmaier M, Biller BM, Boguszewski M, Burman P, Butler G, Chihara K, Christiansen J, Cianfarani S, et al. GH safety workshop position paper: a critical appraisal of recombinant human GH therapy in children and adults. European Journal of Endocrinology 2015 174 P1-P9. (doi:10.1530/EJE-15-0873)
14. Stochholm K & Johannsson G. Reviewing the safety of GH replacement therapy in adults. Growth Hormone and IGF Research 2015 25 149-157. (doi:10.1016/j.ghir.2015.06.006)
15. Clayton P, Gleeson H, Monson J, Popovic V, Shalet SM & Christiansen JS. Growth hormone replacement throughout life: insights into age-related responses to treatment. Growth Hormone and IGF Research 2007 17 369-382. (doi:10.1016/j.ghir.2007.04.010)
16. Bondy CA. Care for girls and women with Turner Syndrome: a guideline of the Turner Syndrome Study Group. Journal of Clinical Endocrinology and Metabolism 2007 92 10-25. (doi:10.1210/jc.2006-1374)
17. Davenport ML. Approach to the patient with Turner Syndrome. Journal of Clinical Endocrinology and Metabolism 2010 95 1487-1495. (doi:10.1210/jc.2009-0926)
18. Pinsker JE. Turner Syndrome: updating the paradigm of clinical care. Journal of Clinical Endocrinology and Metabolism 2012 97 E994-E1003. (doi:10.1210/jc.2012-1245)
19. Gawlik A & Malecka-Tendera E. Transitions in endocrinology: treatment of Turner’s syndrome during transition. European Journal of Endocrinology 2015 170 R57-R74. (doi:10.1530/EJE-13-0900)
20. Sas TC, de Muinck Keizer-Schrama SM, Stijnen T, Jansen M, Otten BJ, Hoorweg-Nijman JJ, Vulsma T, Massa GG, Rouwe CW, Reeser HM, et al. Normalization of height in girls with TS after long-term growth hormone treatment: results of a randomized dose-response trial. Journal of Clinical Endocrinology and Metabolism 1999 84 4607-4612. (doi:10.1210/jc.84.12.4607)
21. Cleemann L, Hjerrild BE, Lauridsen AL, Heickendorff L, Christiansen JS, Mosekilde L & Gravholt CH. Long-term hormone replacement therapy preserves bone mineral density in Turner syndrome. European Journal of Endocrinology 2009 161 251-257. (doi:10.1530/EJE-09-0020)
22. Gravholt CH, Hansen KW, Erlandsen M, Ebbehøj E & Christiansen JS. Nocturnal hypertension and impaired sympathovagal tone in Turner syndrome. Journal of Hypertension 2006 24 353-360. (doi:10.1097/01. hjh.0000200509.17947.0f)
23. Elsheikh M, Hodgson HJ, Wass JA & Conway GS. Hormone replacement therapy may improve hepatic function in women with Turner’s syndrome. Clinical Endocrinology 2001 55 227-231. (doi:10.1046/j.1365-2265.2001.01321.x)
24. Höybye C, Hilding A, Jacobsson H & Thoren M. Growth hormone treatment improves body composition in adults with Prader-Willi syndrome. Clinical Endocrinology 2003 58 653-661. (doi:10.1046/ j.1365-2265.2003.01769.x)
25. Mogul HR, Lee PD, Whitman BY, Zipf WB, Frey M, Myers S, Cahan M, Pinyerd B & Southren AL. Growth hormone treatment of adults with Prader-Willi syndrome and growth hormone deficiency improves lean body mass, fractional body fat, and serum triiodothyronine without glucose impairment: results from the United States multicenter trial. Journal of Clinical Endocrinology and Metabolism 2008 93 1238-1245. (doi:10.1210/jc.2007-2212)
26. Sode-Carlsen R, Farholt S, Rabben KF, Bollerslev J, Schreiner T, Jurik AG, Christiansen JS & Höybye C. Body composition, endocrine and metabolic profiles in adults with Prader-Willi Syndrome. Growth Hormone and IGF Research 2010 20 179-184. (doi:10.1016/j.ghir.2009.12.004)
27. Deal C, Tony M, Höybye C, Allen DB, Tauber M, Christiansen JS and the 2011 GH in PWS Clinical Care Guidelines Workshop Participants. Growth hormone research society workshop summary: consensus guidelines for recombinant human growth hormone therapy in Prader-Willi syndrome. Journal of Clinical Endocrinology and Metabolism 2013 98 E1072-E1078. (doi:10.1210/jc.2012-3888)
28. Kido Y, Sakazume S, Abe Y, Oto Y, Itabashi H, Shiraishi M, Yoshino A, Tanaka Y, Obata K, Murakami N, et al. Testosterone replacement therapy to improve secondary sexual characteristics and body composition without adverse behavioral problems in adult male patients with Prader-Willi syndrome: an observational study. American Journal of Medical Genetics Part A 2013 161A 2167-2173. (doi:10.1002/ajmg.a.36048)
29. Molinas C, Cazals L, Diene G, Glattard M, Arnaud C, Tauber M & French Reference Centre for PWS (FrRefC-PWS). French database of children and adolescents with Prader-Willi syndrome. BMC Medical Genetics 2008 9 89. (doi:10.1186/1471-2350-9-89)
30. van Pareren Y, Mulder P, Houdijk M, Jansen M, Reeser M & Hokken-Koelega A. Effect of discontinuation of growth hormone treatment on risk factors for cardiovascular disease in adolescents born small for gestational age. Journal of Clinical Endocrinology and Metabolism 2003 88 347-353. (doi:10.1210/jc.2002-020458)
31. Van Dijk M, Bannink EMN, Van Pareren YK, Mulder PGH & Hokken-Koelega AC. Risk factors for diabetes mellitus type 2 and metabolic syndrome are comparable for previously growth hormone (GH)-treated young adults born small for gestational age (SGA) and untreated short SGA controls. Journal of Clinical Endocrinology and Metabolism 2007 92 160-165. (doi:10.1210/jc.2006-1073)
32. Müller HL. Craniopharyngioma: long-term consequences of a chronic disease. Expert Review of Neurotherapeutics 2015 15 1241-1244. (doi:10.1586/14737175.2015.1100078)
33. Sterkenburg AS, Hoffmann A, Gebhardt U, Warmuth-Metz M, Daubenbüchel AM & Müller HL. Survival, hypothalamic obesity, and neuropsychological/psychosocial status after childhood-onset craniopharyngioma: newly reported long-term outcomes. Neuro-Oncology 2015 17 1029-1038. (doi:10.1093/neuonc/nov044)
34. Olsson DS, Andersson E, Bryngelsson IL, Nilsson AG & Johannsson G. Excess mortality and morbidity in patients with craniopharyngioma, especially in patients with childhood onset: a population-based study in sweden. Journal of Clinical Endocrinology and Metabolism 2015 100 467-474. (doi:10.1210/jc.2014-3525)
35. Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, et al. Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine 2006 355 1572-1582. (doi:10.1056/NEJMsa060185)
36. Porcu E, Fabbri R, Damiano G, Fratto R, Giunchi S & Venturoli S. Oocyte cryopreservation in oncological patients. European Journal of Obstetrics and Gynecology and Reproductive Biology 2004 113 (Supplement 1) S14-S16. (doi:10.1016/j.ejogrb.2003.11.004)
37. Blijdorp K, van Dorp W, Laven JS, Pieters R, de Jong FH, Pluijm SM, van der Lely AJ, van den Heuvel-Eibrink MM & Neggers SJ. Obesity independently influences gonadal function in very long-term adult male survivors of childhood cancer. Obesity 2014 22 1896-1903. (doi:10.1002/oby.20766)
38. van Dorp W, Blijdorp K, Laven JS, Pieters R, Visser JA, van der Lely AJ, Neggers SJ & vandenHeuvel-Eibrink MM. Decreased ovarian function is associated with obesity in very long-term female survivors of childhood cancer. European Journal of Endocrinology 2013 168 905-912. (doi:10.1530/EJE-13-0114)
39. Chemaitilly W, Li Z, Huang S, Ness KK, Clark KL, Green DM, Barnes N, Armstrong GT, Krasin MJ, Srivastava DK, et al. Anterior hypopituitarism in adult survivors of childhood cancers treated with cranial radiotherapy: a report from the St Jude Lifetime Cohort study. Journal of Clinical Oncology 2015 33 492-500. (doi:10.1200/JCO.2014.56.7933)
40. Grant C & Pan J. A comparison of five transition programmes for youth with chronic illness in Canada. Child: Care, Health and Development 2011 37 815-820. (doi:10.1111/j.1365-2214.2011.01322.x)
41. Colver A & Longwell S. New understanding of adolescent brain development: relevance to transitional healthcare for young people with long term conditions. Archives of Disease in Childhood 2013 98 902-907. (doi:10.1136/archdischild-2013-303945)
42. Gleeson H & Wisniewski AB. Working with adolescents and young adults to support transition. Endocrine Development 2014 27 128-137. (doi:10.1159/000363637)
43. Gleeson H. Part of the problem, part of the solution-adult physicians’ role in adolescent and young adult health. Clinical Medicine 2015 15 413-414. (doi:10.7861/clinmedicine.15-5-413)
44. Crowley R, Wolfe I, Lock K & McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Archives of Disease in Childhood 2011 96 548-553. (doi:10.1136/ adc.2010.202473)