Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Tijdschrift voor Kindergeneeskunde 4/2013

01-08-2013 | artikelen

De longitudinale relatie tussen tevredenheid met transitiezorg en kwaliteit van leven bij chronisch zieke adolescenten

Auteurs: dr. Jane M. Cramm, dr. Mathilde M.H. Strating, MSc Henk M. Sonneveld, prof.dr. Anna P. Nieboer

Gepubliceerd in: Tijdschrift voor Kindergeneeskunde | Uitgave 4/2013

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Samenvatting

Doel.

Met deze studie beogen we de longitudinale relatie tussen tevredenheid met transitiezorg en kwaliteit van leven bij chronisch zieke adolescenten te onderzoeken.

Methoden.

Dit longitudinale onderzoek werd uitgevoerd bij adolescenten met type 1-diabetes, juveniele idiopathische artritis (JIA) en neuromusculaire aandoeningen. Bij de nulmeting (T0) vulden 138 respondenten (respons 31%) een vragenlijst in en een jaar later (T1) 188 respondenten (respons 43%).

Resultaten.

Uit de variantieanalyse bleek dat adolescenten met diabetes de hoogste fysieke kwaliteit van leven hadden, gevolgd door respectievelijk adolescenten met neuromusculaire aandoeningen en JIA (p ≤ 0,01). Adolescenten met diabetes rapporteerden ook de hoogste sociale kwaliteit van leven, gevolgd door respectievelijk de adolescenten met JIA en neuromusculaire aandoeningen (beide p ≤ 0,001). Uit de univariate analyses bleek dat de tevredenheid met de transitiezorg op T0 significant was gerelateerd aan emotionele en fysieke kwaliteit van leven op T1 (beide p ≤ 0,05). Op T1 was de tevredenheid met transitiezorg significant gerelateerd aan de emotionele, fysieke en sociale kwaliteit van leven van adolescenten (alle p ≤ 0,001). De multivariate regressieanalyses toonden aan dat de tevredenheid met transitiezorg op T1 was gerelateerd aan de emotionele ( ß = –0,20, p ≤ 0,05) en sociale ( ß = –0,35, p ≤ 0,01) kwaliteit van leven door de tijd heen, gecorrigeerd voor achtergrondkenmerken en kwaliteit van leven op T0. Dit wil zeggen dat lagere gap scores, waarmee verschillen tussen ‘de tevredenheid met best mogelijke transitiezorg’ en ‘huidige transitiezorg’ worden uitgedrukt, geassocieerd zijn met een betere sociale en emotionele kwaliteit van leven bij deze adolescenten.

Conclusies.

Er is een longitudinale relatie tussen tevredenheid met transitiezorg en sociale en emotionele kwaliteit van leven. Een hogere mate van tevredenheid gaat daarbij gepaard met een verbeterde kwaliteit van leven. Dit impliceert dat verbeterde transitiezorg voor adolescenten naar verwachting een gunstige invloed zal hebben op hun kwaliteit van leven.
Literatuur
1.
go back to reference Blum RWM, 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;14:570–6. PubMedCrossRef Blum RWM, 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;14:570–6. PubMedCrossRef
2.
go back to reference Scal P. Transition for youth with chronic conditions: Primary care physicians’ approaches. Pediatrics. 2002;110:1315–21. PubMed Scal P. Transition for youth with chronic conditions: Primary care physicians’ approaches. Pediatrics. 2002;110:1315–21. PubMed
3.
go back to reference Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–53. PubMedCrossRef Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–53. PubMedCrossRef
4.
go back to reference Anthony SJ, Martin K, Drabble A, et al. Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplant. 2009;9:614–9. PubMedCrossRef Anthony SJ, Martin K, Drabble A, et al. Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplant. 2009;9:614–9. PubMedCrossRef
5.
go back to reference Dovey-Pearce G, Hurrell R, May C, et al. Young adults’ (16-25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health Soc Care Community. 2005;13:409–19. PubMedCrossRef Dovey-Pearce G, Hurrell R, May C, et al. Young adults’ (16-25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health Soc Care Community. 2005;13:409–19. PubMedCrossRef
6.
go back to reference O’Connell B, Bailey S, Pearce J. Straddling the pathway from paediatrician to mainstream health care: transition issues experienced in disability care. Aust J Rural Health. 2003;11:57–63. PubMedCrossRef O’Connell B, Bailey S, Pearce J. Straddling the pathway from paediatrician to mainstream health care: transition issues experienced in disability care. Aust J Rural Health. 2003;11:57–63. PubMedCrossRef
7.
go back to reference Staa AL van, Jedeloo S, Meeteren J van, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev. 2011;37:821–32. PubMedCrossRef Staa AL van, Jedeloo S, Meeteren J van, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev. 2011;37:821–32. PubMedCrossRef
8.
go back to reference Staa AL van, Jedeloo S, Stege H van der. ‘ What we want’: chronically ill adolescents’ preferences and priorities for improving health care. Patient Prefer Adherence. 2011;5:291–305. PubMedCrossRef Staa AL van, Jedeloo S, Stege H van der. ‘ What we want’: chronically ill adolescents’ preferences and priorities for improving health care. Patient Prefer Adherence. 2011;5:291–305. PubMedCrossRef
9.
go back to reference Kelly AM, Kratz B, Bielski M, Rinehart PM. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics. 2002;110:1322–7. PubMed Kelly AM, Kratz B, Bielski M, Rinehart PM. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics. 2002;110:1322–7. PubMed
10.
go back to reference 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. J Adolesc Health. 2011; 48:429–40. PubMedCrossRef 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. J Adolesc Health. 2011; 48:429–40. PubMedCrossRef
11.
go back to reference Rosen DS. Transition of young people with respiratory diseases to adult health care. Paediatr Respir Rev. 2004;5:124–31. PubMedCrossRef Rosen DS. Transition of young people with respiratory diseases to adult health care. Paediatr Respir Rev. 2004;5:124–31. PubMedCrossRef
12.
go back to reference Jedeloo S, Staa A van, Latour JM, Exel NJ van. Preferences for health care and self-management among Dutch adolescents with chronic conditions: A Q-methodological investigation. Int J Nurs Stud. 2010;47:593–603. PubMedCrossRef Jedeloo S, Staa A van, Latour JM, Exel NJ van. Preferences for health care and self-management among Dutch adolescents with chronic conditions: A Q-methodological investigation. Int J Nurs Stud. 2010;47:593–603. PubMedCrossRef
13.
go back to reference Betz CL. Transition adolescents with special health care needs: review and analysis of the literature. Issues Compr Pediatr Nurs. 2004;27:179–241. PubMedCrossRef Betz CL. Transition adolescents with special health care needs: review and analysis of the literature. Issues Compr Pediatr Nurs. 2004;27:179–241. PubMedCrossRef
14.
go back to reference Lotstein DS, Inkelas M, Hays RD, et al. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health. 2008; 43:23–9. PubMedCrossRef Lotstein DS, Inkelas M, Hays RD, et al. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health. 2008; 43:23–9. PubMedCrossRef
15.
go back to reference McDonagh JE. Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant. 2005;9:364–72. PubMedCrossRef McDonagh JE. Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant. 2005;9:364–72. PubMedCrossRef
16.
go back to reference Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2:61–70. PubMedCrossRef Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2:61–70. PubMedCrossRef
17.
go back to reference Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115:112–20. PubMedCrossRef Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115:112–20. PubMedCrossRef
18.
go back to reference Wojciechowski EA, Hurtig A, Dorn L. A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services. J Pediatr Nurs. 2002;17:18–27. PubMedCrossRef Wojciechowski EA, Hurtig A, Dorn L. A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services. J Pediatr Nurs. 2002;17:18–27. PubMedCrossRef
19.
go back to reference Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol. 2000;14:469–72. PubMedCrossRef Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol. 2000;14:469–72. PubMedCrossRef
20.
go back to reference Wysocki T, Hough BS, Ward KM, Green LB. Diabetes mellitus in the transition to adulthood: adjustment, self-care, and health status. J Dev Behav Pediatr. 1992;13:194–201. PubMedCrossRef Wysocki T, Hough BS, Ward KM, Green LB. Diabetes mellitus in the transition to adulthood: adjustment, self-care, and health status. J Dev Behav Pediatr. 1992;13:194–201. PubMedCrossRef
21.
go back to reference Yeung E, Kay J, Roosevelt GE, et al. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol. 2008;125:62–5. PubMedCrossRef Yeung E, Kay J, Roosevelt GE, et al. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol. 2008;125:62–5. PubMedCrossRef
22.
go back to reference While A, Forbes A, Ullman R, et al. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev. 2004;30:439–52. PubMedCrossRef While A, Forbes A, Ullman R, et al. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev. 2004;30:439–52. PubMedCrossRef
23.
go back to reference Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil. 2007; 88:1064–73. PubMedCrossRef Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil. 2007; 88:1064–73. PubMedCrossRef
24.
go back to reference Nakhla M, Daneman D, Frank M, Guttmann A. Translating transition: a critical review of the diabetes literature. J Pediatr Endocrinol Metab. 2008;21:507–16. PubMed Nakhla M, Daneman D, Frank M, Guttmann A. Translating transition: a critical review of the diabetes literature. J Pediatr Endocrinol Metab. 2008;21:507–16. PubMed
25.
go back to reference McDonagh JE, Southwood TR, Shaw KL; British Society of Paediatric and Adolescent Rheumatology. The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2007;46: 161–8. CrossRef McDonagh JE, Southwood TR, Shaw KL; British Society of Paediatric and Adolescent Rheumatology. The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2007;46: 161–8. CrossRef
26.
go back to reference McDonagh JE, Foster H, Hall MA, Chamberlain MA; British Paediatric Rheumatology Group. Audit of rheumatology services for adolescents and young adults in the UK. Rheumatology (Oxford). 2000;39:596–602. CrossRef McDonagh JE, Foster H, Hall MA, Chamberlain MA; British Paediatric Rheumatology Group. Audit of rheumatology services for adolescents and young adults in the UK. Rheumatology (Oxford). 2000;39:596–602. CrossRef
27.
go back to reference Lotstein DS, Ghandour R, Cash A, et al. Planning for health care transitions: Results From the 2005-2006 National Survey of Children With Special Health Care Needs. Pediatrics. 2009;123:145–52. CrossRef Lotstein DS, Ghandour R, Cash A, et al. Planning for health care transitions: Results From the 2005-2006 National Survey of Children With Special Health Care Needs. Pediatrics. 2009;123:145–52. CrossRef
28.
go back to reference Shaw KL, Southwood TR, McDonagh JE; British Society of Paediatric and Adolescent Rheumatology. Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2005;44:806–12. CrossRef Shaw KL, Southwood TR, McDonagh JE; British Society of Paediatric and Adolescent Rheumatology. Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2005;44:806–12. CrossRef
29.
go back to reference Shaw KL, Southwood TR, McDonagh JE. Users’ perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43:770–8. CrossRef Shaw KL, Southwood TR, McDonagh JE. Users’ perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43:770–8. CrossRef
30.
go back to reference Shaw KL, Southwood TR, McDonagh JE. Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology (Oxford). 2004; 43:211–9. CrossRef Shaw KL, Southwood TR, McDonagh JE. Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology (Oxford). 2004; 43:211–9. CrossRef
31.
go back to reference Rettig P, Athreya BH. Adolescents with chronic disease. Transition to adult health care. Arthritis Care Res. 1991;4:174–80. PubMedCrossRef Rettig P, Athreya BH. Adolescents with chronic disease. Transition to adult health care. Arthritis Care Res. 1991;4:174–80. PubMedCrossRef
32.
go back to reference Zack J, Jacobs CP, Keenan PM, et al. Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care. Pediatr Pulmonol. 2003;36:376–83. PubMedCrossRef Zack J, Jacobs CP, Keenan PM, et al. Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care. Pediatr Pulmonol. 2003;36:376–83. PubMedCrossRef
33.
go back to reference Petersen C, Schmidt S, Power M, Bullinger M; DISABKIDS Group. Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res. 2005;14:1065–77. PubMedCrossRef Petersen C, Schmidt S, Power M, Bullinger M; DISABKIDS Group. Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res. 2005;14:1065–77. PubMedCrossRef
34.
go back to reference Schmidt S, Debensason D, Mühlan H, et al. The DISABKIDS generic quality of life instrument showed cross-cultural validity. J Clin Epidemiol. 2006;59:587–98. PubMedCrossRef Schmidt S, Debensason D, Mühlan H, et al. The DISABKIDS generic quality of life instrument showed cross-cultural validity. J Clin Epidemiol. 2006;59:587–98. PubMedCrossRef
35.
go back to reference Shaw KL, Southwood TR, McDonagh JE. Development and preliminary validation of the ‘ Mind the Gap’ scale to assess satisfaction with transitional care among adolescents with juvenile idiopathic arthritis. Child Care Health Dev. 2007;33: 280–388. Shaw KL, Southwood TR, McDonagh JE. Development and preliminary validation of the ‘ Mind the Gap’ scale to assess satisfaction with transitional care among adolescents with juvenile idiopathic arthritis. Child Care Health Dev. 2007;33: 280–388.
36.
go back to reference Shaw KL, Southwood TR, McDonagh JE. Transitional care for adolescents with juvenile idiopathic arthritis: results of a Delphi study. Rheumatology (Oxford). 2004;43:1000–6. CrossRef Shaw KL, Southwood TR, McDonagh JE. Transitional care for adolescents with juvenile idiopathic arthritis: results of a Delphi study. Rheumatology (Oxford). 2004;43:1000–6. CrossRef
37.
go back to reference Picavet HSJ. National health surveys by mail 2 home interview. Effects on response. J Epidemiol Community Health. 2001;55:408–13. PubMedCrossRef Picavet HSJ. National health surveys by mail 2 home interview. Effects on response. J Epidemiol Community Health. 2001;55:408–13. PubMedCrossRef
38.
go back to reference Buttle F, Thomas G. Questionnaire colour and mail survey response rate. J Mark Res Soc. 1997; 39:625–6. Buttle F, Thomas G. Questionnaire colour and mail survey response rate. J Mark Res Soc. 1997; 39:625–6.
Metagegevens
Titel
De longitudinale relatie tussen tevredenheid met transitiezorg en kwaliteit van leven bij chronisch zieke adolescenten
Auteurs
dr. Jane M. Cramm
dr. Mathilde M.H. Strating
MSc Henk M. Sonneveld
prof.dr. Anna P. Nieboer
Publicatiedatum
01-08-2013
Uitgeverij
Bohn Stafleu van Loghum
Gepubliceerd in
Tijdschrift voor Kindergeneeskunde / Uitgave 4/2013
Print ISSN: 0376-7442
Elektronisch ISSN: 1875-6840
DOI
https://doi.org/10.1007/s12456-013-0164-1

Andere artikelen Uitgave 4/2013

Tijdschrift voor Kindergeneeskunde 4/2013 Naar de uitgave