Health Care Transition of Adolescents and Young Adults with Haemophilia: the Situation in Germany and the Munich experience

Abstract

Patients suffering from haemophilia encounter various phases in life, in which individual needs, life situations, and self- and disease perception change rapidly. One of these phases spans from the beginning of puberty until early adulthood, in which individuals gain self-responsibility and reach independence and autonomy. In this challenging time that determines future health, adolescents and young adults need sustainable familiar and professional support. A change in health care team and treatment centre may expose adolescent patients to threats but also provides the possible opportunity to be well prepared. While there is emerging evidence that the so-called health care transition programmes are effective in maintaining quality of care in other disease areas, transition programmes for patients with haemophilia are still rare in Germany, and the evidence is limited. We describe the situation in Germany, discuss our experience in Munich and review some of the available guidance; we conclude that transition programmes should become a standard of care in haemophilia.

Zusammenfassung

Patienten mit Hämophilie durchlaufen verschiedene Lebensabschnitte, in denen sich ihre Bedürfnisse, Lebensumstände und ihr Blick auf die Erkrankung und sich selbst verändern. Eine dieser Phasen umfasst die Pubertät und den Übergang ins Erwachsenenalter. In dieser Zeit erlangen die Patienten Eigenverantwortung und streben nach Unabhängigkeit und Autonomie. Diese Phase ist herausfordernd und bestimmend für die gesundheitliche Zukunft. Daher benötigen die Patienten eine tragfähige familiäre und professionelle Unterstützung, um Ängsten zu begegnen und mögliche Chancen herauszuarbeiten. Die Effektivität von Transitions-Programmen wird bereits für viele Krankheitsbilder in der Literatur beschrieben, allerdings werden diese im Bereich der Hämophilie in Deutschland selten angewendet. Wir beschreiben die Situation in Deutschland, erläutern unsere Münchner Erfahrungen und besprechen einige der verfügbaren Empfehlungen aus der Literatur. Zusammenfassend sollten Transitions-Program Teil der Routinebehandlung bei Hämophilie werden.

Keywords

haemophilia - transition - medical - psychosocial

Schlüsselwörter

Hämophilie - Transition - medizinisch - psychosozial

• References

• 1 Srivastava A, Brewer AK, Mauser-Bunschoten EP. , et al; Treatment Guidelines Working Group on Behalf of The World Federation Of Hemophilia. Guidelines for the management of hemophilia. Haemophilia 2013; 19 (01) e1-e47
• 2 Remschmidt H. Psychosocial milestones in normal puberty and adolescence. Horm Res 1994; 41 (Suppl. 02) 19-29
• 3 Holder MK, Blaustein JD. Puberty and adolescence as a time of vulnerability to stressors that alter neurobehavioral processes. Front Neuroendocrinol 2014; 35 (01) 89-110
• 4 Sawyer S, Drew S, Duncan R. Adolescents with chronic disease--the double whammy. Aust Fam Physician 2007; 36 (08) 622-627
• 5 Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011; 96 (06) 548-553
• 6 White PH, Cooley WC. ; TRANSITIONS CLINICAL REPORT AUTHORING GROUP; AMERICAN ACADEMY OF PEDIATRICS; AMERICAN ACADEMY OF FAMILY PHYSICIANS; AMERICAN COLLEGE OF PHYSICIANS. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2018; 142 (05) e20182587
• 7 Wright C, Steinway C, Jan S. The genesis of systems of care for transition to adulthood services: emerging models in primary and subspecialty care. Curr Opin Pediatr 2018; 30 (02) 303-310
• 8 Campbell F, Biggs K, Aldiss SK. , et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev 2016; 4: CD009794
• 9 Betz CL, Smith K, Macias K. Testing the transition preparation training program: a randomized controlled trial. Intl J Child Adolesc Health 2010; 3 (04) 595-607
• 10 Huang JS, Terrones L, Tompane T. , et al. Preparing adolescents with chronic disease for transition to adult care: a technology program. Pediatrics 2014; 133 (06) e1639-e1646
• 11 Mackie AS, Islam S, Magill-Evans J. , et al. Healthcare transition for youth with heart disease: a clinical trial. Heart 2014; 100 (14) 1113-1118
• 12 Steinbeck KS, Shrewsbury VA, Harvey V. , et al. A pilot randomized controlled trial of a post-discharge program to support emerging adults with type 1 diabetes mellitus transition from pediatric to adult care. Pediatr Diabetes 2015; 16 (08) 634-639
• 13 Gabriel P, McManus M, Rogers K, White P. Outcome evidence for structured pediatric to adult health care transition interventions: a systematic review. J Pediatr 2017; 188: 263.e15-269.e15
• 14 Nakhla M, Bell LE, Wafa S, Dasgupta K. Improving the transition from pediatric to adult diabetes care: the pediatric care provider's perspective in Quebec, Canada. BMJ Open Diabetes Res Care 2017; 5 (01) e000390
• 15 Sable C, Foster E, Uzark K. , et al; American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011; 123 (13) 1454-1485
• 16 Al-Yateem N. Guidelines for the transition from child to adult cystic fibrosis care. Nurs Child Young People 2013; 25 (05) 29-34
• 17 Waldboth V, Patch C, Mahrer-Imhof R, Metcalfe A. Living a normal life in an extraordinary way: a systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition. Int J Nurs Stud 2016; 62: 44-59
• 18 Blum RW, Garell D, Hodgman CH. , et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 14 (07) 570-576
• 19 Pape L, Oldhafer M. Transition – the next step. J Transition Med 2019 1. (01). Doi: 10.1515/jtm-2017-0001
• 20 Valentino LA, Santagostino E, Blanchette V, van den Berg M. Managing the pediatric patient and the adolescent/adult transition. Semin Thromb Hemost 2006; 32 (Suppl. 02) 28-31
• 21 Schrijvers L, Beijlevelt-Van der Zande M, Peters M. , et al. Achieving self-management of prophylactic treatment in adolescents: the case of haemophilia. Patient Educ Couns 2016; 99 (07) 1179-1183
• 22 Schwartz CE, Zhang J, Su J. Longitudinal validity of the hemophilia caregiver impact measure. Qual Life Res 2019; 28 (07) 1979-1987
• 23 Resseguier N, Rosso-Delsemme N, Beltran Anzola A. , et al. Determinants of adherence and consequences of the transition from adolescence to adulthood among young people with severe haemophilia (TRANSHEMO): study protocol for a multicentric French national observational cross-sectional study. BMJ Open 2018; 8 (07) e022409
• 24 Sun HL, Breakey VR, Straatman L, Wu JK, Jackson S. Outcomes indicators and processes in transitional care in adolescents with haemophilia: a Delphi survey of Canadian haemophilia care providers. Haemophilia 2019; 25 (02) 296-305
• 25 Young G. From boy to man: recommendations for the transition process in haemophilia. Haemophilia 2012; 18 (Suppl. 05) 27-32
• 26 Brand B, Dunn S, Kulkarni R. Challenges in the management of haemophilia on transition from adolescence to adulthood. Eur J Haematol 2015; 95 (Suppl. 81) 30-35
• 27 Belling L, Harrop M, Kocik S. , et al. MASAC Document #147: Transition Guidelines for People with Bleeding Disorders. Available at: https://www.hemophilia.org/Researchers-Healthcare-Providers/Medical-and-Scientific-Advisory-Council-MASAC/MASAC-Recommendations/Transition-Guidelines-for-People-with-Bleeding-Disorders . Published 2003. Accessed October 4, 2019
• 28 Paone MC, Wigle M, Saewyc E. The ON TRAC model for transitional care of adolescents. Prog Transplant 2006; 16 (04) 291-302
• 29 Bérubé S, Mouillard F, Amesse C, Sultan S. Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children. BMC Pediatr 2016; 16: 4
• 30 Lee Mortensen G, Strand AM, Almén L. Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: a qualitative review. Haemophilia 2018; 24 (06) 862-872
• 31 Lindvall K, Colstrup L, Wollter IM. , et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia 2006; 12 (01) 47-51
• 32 Sterling LE, Nyhof-Young J, Blanchette V, Breakey VR. Growing up with hemophilia: assessing teen's experiences and needs during transition to adult care. UTMJ 2013; 90 (04) 149-154
• 33 Gray WN, Schaefer MR, Resmini-Rawlinson A, Wagoner ST. Barriers to transition from pediatric to adult care: a systematic review. J Pediatr Psychol 2018; 43 (05) 488-502
• 34 Girisch M, Bidlingmaier C. Berufsberatung Hämophilie. Available at: https://www.berufe-haemophilie.de . Published 2010. Accessed October 4, 2019
• 35 Ringwald J, Rudolph P, Biner M. , et al. Travel behaviour of patients with haemophilia. Travel Med Infect Dis 2013; 11 (03) 159-165
• 36 Parish KL. Sexuality and haemophilia: connections across the life-span. Haemophilia 2002; 8 (03) 353-359
• 37 Schilling FH. Transition bei angeborenen Gerinnungsstörungen. Jahrestagung der Gesellschaft für Thrombose- und Hämostaseforschung e.V. Münster; 2016
• 38 American Society of Hematology. Hemophilia transition readiness assessment template. Available at: https://www.hematology.org/Clinicians/Priorities/Transitions/5575.aspx . Last downloaded October 4, 2019
• 39 Schalm S, Niewerth M, Minden K. New support services for the care of young patients with rheumatic diseases [in German]. Z Rheumatol 2018; 77 (08) 685-693
• 40 Escherich G, Bielack S, Maier S. , et al. Building a national framework for adolescent and young adult hematology and oncology and transition from pediatric to adult care: report of the inaugural meeting of the “AjET” Working Group of the German Society for Pediatric Oncology and Hematology. J Adolesc Young Adult Oncol 2017; 6 (02) 194-199