Translating Transition: A Critical Review of the Diabetes ...


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Translating Transition: A Critical Review of the Diabetes ...

  1. 1. © Freund Publishing House Ltd., London Journal of Pediatric Endocrinology & Metabolism, 21, 507-516 (2008) Translating Transition: A Critical Review of the Diabetes Literature Meranda Nakhla1,3, Denis Daneman1, Marcia Frank1 and Astrid Guttmann1,2,3 Divisions of 1Endocrinology and 2Paediatric Medicine, Department of Paediatrics, University of Toronto and The Hospital for Sick Children and 3The Institute for Clincial Evaluative Sciences, Toronto, Ontario, Canada ABSTRACT INTRODUCTION Effective transition to an adult diabetes care Adolescence is a period of transition regardless provider is a significant component of care in of health status. During this time, the adolescent is adolescents with diabetes mellitus. During this establishing his/her own personal identity, sense of period adolescents are at risk of dropping out of autonomy, and sexuality. For those with diabetes medical follow-up, an action which may inter- mellitus, this stage is further complicated by the fere with their future physical and psychological daily demands of a chronic disease. As these well-being. The purpose of this paper is to changes are occurring, the adolescent is faced with review the diabetes literature as it pertains to the challenge of transferring from pediatric to adult transition including the outcomes, methods and diabetes care. The transition to adult medical care patients’ perceptions of the transition period. has been defined by the Society of Adolescent The results of the studies examined demonstrate Medicine as ‘the purposeful, planned movement of a decrease in diabetes care visits following adolescents and young adults with chronic physical transition and that improvement in clinic and medical conditions from child-centered to attendance may be achieved through: (1) imple- adult-oriented health care systems1. The goal of menting an educational transition program; (2) transition is to provide health-care that is co- having a transition care coordinator; and (3) ordinated, uninterrupted, developmentally appro- having a young adult transition clinic attended priate and comprehensive1. by both adult and pediatric physicians. Despite Effective transition to adult diabetes care is a the recognized importance of successful transi- significant component of an adolescent’s care. It tion for adolescents with diabetes, studies on the often occurs at a time when glycemic control tends subject remain sparse, highlighting the need for to be suboptimal2-6 due to a number of factors, further research to determine both the magni- including the physiological changes associated with tude of the problem as well as the impact of puberty7, poor adherence to insulin regimens8 and interventions to improve the processes of decreased clinic attendance. As demonstrated in transition. several studies, irregular clinic attendance is associated with poor glycemic control and in- creased rates of diabetes-related complications9,10. KEY WORDS Optimizing glycemic control leads to reductions in the development and progression of microvascular diabetes mellitus, transition care, transfer of care complications11. In addition, the benefits of early glycemic control may translate into persistent reductions in microvascular complications12. This Reprint address: further emphasizes the importance of uninterrupted Dr. Denis Daneman care in maintaining or improving glycemic control, Department of Paediatrics as well as in providing opportunities for the The Hospital for Sick Children monitoring and prevention of diabetes-related 555 University Avenue complications. Toronto, Ontario M5G 1X8, Canada e-mail: VOLUME 21, NO. 6, 2008 507
  2. 2. 508 M. NAKHLA ET AL. During the transition process adolescents are at described physician visits following transition. All risk of dropping out of health care follow-up which four found a decrease in physician visits for may have negative results on both their future diabetes care. Through patients’ self-report and physical and psychological well-being. Despite verification by the adult attending physician, these concerns and numerous discussions on Frank14 found that 24% (n = 10/41) of participants transitional diabetes care, there are few studies on had less than one diabetes care visit per year 3-4 the subject. Our objective was to review the years after discharge from a pediatric diabetes diabetes literature as it pertains to transition with a clinic. When compared to the group with medical focus on the outcomes, methods and patients’ follow-ups, those lost to follow-up were more perceptions of the transition period. likely to have had worse metabolic control, have been hospitalized for a diabetes-related illness and have attended fewer clinic appointments in the year METHODS prior to transfer (2.6 visits vs 3.5 visits, p <0.01)14. The lost to follow-up group was also less likely to We performed a search of the literature using have had post-secondary education (p <0.01). In the key words ‘diabetes mellitus’, ‘transition’ or telephone interviews with the patients who did not ‘transfer’ and ‘move’ or ‘change’ or ‘discharge’ have medical follow-up, 70% reported that they limiting the search to ‘adolescents’ and ‘humans’. believed that follow-up was unnecessary as they The following article databases were used: Medline were feeling fine and 30% were not ready to (1950-2007), CINAHL (Cumulative Index to comply with the physician’s suggestions14. Nursing & Allied Health, 1982-2007) and Through patient recall, Frank also found that the EMBASE (1980-2007). We used the SIGNS mean number of diabetes-related hospitalizations (Scottish Intercollegiate Guidelines Network) grad- following transition was higher for the lost to ing for cohort studies as a framework for assessing follow-up group versus those with follow-up visits. the quality of studies13. Frank concluded that the possible risk factors for poor compliance upon transfer to adult care RESULTS included those who were in poor glycemic control and those with fewer diabetes care visits in the year The articles collected from the search included before transfer14. 14 original articles, two abstracts, seven editorials Other studies have shown lower proportions of or perspectives, five review articles and four follow-up losses15,16. In two separate studies, articles that were not relevant to this review. We Pacaud et al.15,16 determined the proportion of focused our review on the original articles and patients who had regular diabetes adult care abstracts, which were categorized based on the through administering a mail out survey in two main objectives of the study, including: (1) descrip- different cities. Each city had slightly different tion of outcomes following transition including methods of health care delivery. In one, diabetes perceptions of the transition process; and (2) care was delivered by a diabetes center for the evaluation of the models of transition care. We pediatric age group and transfer was to either an were unable to assign a specific grade to the adult endocrinologist or an adult diabetes clinic15. articles as most were not true cohort studies but In the other city pediatric diabetes care was shared rather case-series and descriptive reports. between a family physician and a pediatric endo- crinologist16. As adults, the diabetes care was shared between the patient’s family physician and DESCRIPTION OF OUTCOMES FOLLOWING TRANSITION an adult endocrinologist. Patients were not neces- sarily transferred to an adult diabetes center16. In We found nine studies describing the outcomes each of these studies by Pacaud et al., the propor- following transition with three describing multiple tion of patients lost to follow-up, defined as a delay outcomes (Table 1). Among these studies, four of >12 months during the transition between JOURNAL OF PEDIATRIC ENDOCRINOLOGY & METABOLISM
  3. 3. TRANSLATING TRANSITION IN DIABETES MELLITUS 509 pediatric and adult care, was 11% in the first city should target young adults (‘mid-teens to age 30’) and 13% in the second15,16. As the proportions of offering opportunities to meet other young adults patients lost to follow-up were similar between the with diabetes mellitus. two cities, the authors concluded that poor com- Other studies have found that adolescents felt it pliance with medical follow-up was due to patient would be helpful to have written information characteristics rather than the characteristics of the describing the process of transition21 and about the health care delivery models. new physician before being transferred18. The Three studies describe the HbA1c levels follow- survey by Pacaud et al.16 found that some patients ing transition17-19. Despite decreases in clinic visits felt that the transition process was abrupt, with a after transition, two studies found that HbA1c levels lack of coordination among the multi-disciplinary did not significantly change17,18, while the other team and, as in the study by Scott et al.20, found found that HbA1c levels improved19. However, the that lengthy waiting times at the time of the studies were limited by their small sample sizes appointment were an issue with the transition and were prone to selection biases17,18. In one, only process16. the participants who had at least one visit after The studies presented describe patient outcomes transition to a young adults’ clinic were included in upon discharge from a pediatric diabetes clinic, the analysis17. As well, the authors did not particularly in three domains: patient compliance determine the participants’ glycemic control when with diabetes care visits, glycemic control, and they were ultimately transferred to adult care17. perception of the transition process. The studies We found five studies within the transition care reviewed are limited by their small sample sizes14-19, literature which described patients’ perceptions of and are prone to both selection15-17 and information the transition process including their suggestions of biases14-17. Despite these limitations, they do what would be the most appropriate transition demonstrate a decrease in diabetes care visits model15,16,18,20,21. Through a participatory research following transition and that factors such as poor project, time constraints were identified as the main glycemic control, presence of diabetes-related reason for participants’ lack of attendance at adult hospitalizations and poor clinic attendance in the clinics in the report by Scott et al.20. Participants year prior to transfer appear to be good predictors suggested that adult clinics should have more of poor clinic attendance after transfer. The impact flexible hours and shorter waiting times at appoint- of these outcomes on glycemic control and diabetes- ments to accommodate the demands associated related complications has not been studied, but with their part-time jobs and schooling20. As well, would be expected to be poor based on our evenings were chosen as the best time for clinics to knowledge of the relationship between control and take place among 36% of the participants. When complications11,12. asked about their experience with the transition process, participants felt a sense of abandonment EVALUATION OF MODELS OF TRANSITION CARE by the pediatric team, with some feeling “lost in the shuffle” as they had not received notifications or Multiple methods of transition care in diabetes reminders regarding appointments with the adult have been described in the literature; however, centers. Participants suggested that for a smoother there are few studies evaluating their impact. We transition process to occur that they would have identified four studies and two abstracts (Table 2). preferred longer initial meetings with the adult Kipps et al.22 systematically evaluated differing diabetes team or to have had visits with the adult transition care models within four health districts in team prior to being transferred to adult care. When the Oxford (UK) region: (1) direct transfer to an asked about their ‘ideal’ diabetes center patients adult clinic; (2) transfer to a young adult clinic in a suggested that it should not be in a hospital setting different hospital; (3) transfer to a young adult and that staff should be approachable and under- clinic within the same hospital with introductions stand the issues faced by young adults. Participants to the adult physician prior to transfer; and (4) also suggested that the ‘ideal’ diabetes center transfer to an adolescent clinic run jointly by VOLUME 21, NO. 6, 2008
  4. 4. TABLE 1 Summary and main findings of studies describing outcomes following transition Reference Study design No. of Follow-up Outcomes Primary results Associations with Study limitations patients time measured outcome Salmi et al.19 Quasi-experimental 61 1 year HbA1c 1 yr pre- Improved HbA1c No associations Small sample size study and post-transfer (11.2 ± 2.2 vs 9.9 ± 1.7%) measured Selection bias Frank14 Retrospective 41 3-4 years (1) Losses to 24% loss to follow-up for Year prior to discharge: Small sample size Cohort Study (31 compliant; follow-up after diabetes care ↑ hospitalizations Observation times for 10 non- discharge from Increased mean number of (60 vs 19%, p <0.05) follow-up were compliant) pediatric care diabetes-related hospitalizations ↑ HbA1c variable among (2) Predictors of compared to the group with (10.6 vs 9%, p <0.05) patients losses to follow-up regular follow-up (1.4 vs 0.6 ↓ clinic attendance Ascertainment of respectively, p <0.01) (2.6 vs 3.5 visits, p hospitalizations Total number hospitalizations <0.01) based on patients’ for diabetes-related recall introducing complications not significantly information bias different between the groups Pacaud et al.15 Survey 135 2-4 years (1) Losses to Overall 13% loss to follow-up No difference in Response rate 36% follow-up after for diabetes care outcomes detected prone to selection discharge from between two pediatric bias pediatric care diabetes clinics in Outcome (2) Comparison of Montreal, Canada ascertainment based two pediatric on self-reports (recall diabetes clinics bias) Confounders (i.e. socio-economic status) not measured Pacaud et al.16 Survey 81 2-4 years (1) Losses to Overall 11% loss to follow-up No differences in Outcome follow-up after for diabetes care outcomes detected ascertainment based discharge from between two differing on self-reports (recall pediatric care health care models bias) (2) Rates compared Survey method prone between two cities to selection bias with differing health care deliveries
  5. 5. Orr et al.17 Convenience 82 1 year (1) Mean HbA1c 1 No change in mean HbA1c No associations Only patients with ≥ Sample yr before and after (9.9% vs 10.2%, p = 0.125) measured one visit post- transfer to young transition included in adult (adolescent) analysis (selection diabetes clinic bias) Ultimate question of what happens to glycemic control upon transfer to adult care not determined Busse et al.18 Retrospective 101 1-3 years (1) Physician visits Physician visits pre-transfer 8.5 No association between Small sample size Cohort Study (44 HbA1c) 1 yr pre- and post- ± 2.3/year and 6.7 ± 3.2/year clinic attendance and transfer (p <0.001) HbA1c levels (p = 0.65) (2) Mean HbA1c HbA1c 8.5 ± 1.5% vs 8.3 ± pre- and post- 1.6% (p = 0.441) transfer (3) Patients’ perceptions
  6. 6. TABLE 2 Summary and main findings of studies evaluating methods of transition care Reference Study design No. of Transition method Follow-up time Main outcome Results Limitations patients measures Frank24 Case-series 76 Anticipatory guidance 2-4 years Losses to follow-up 7% lost to follow-up Preliminary results through formal and after discharge from compared to 24% in Characteristics of historic informal workshops pediatric care previously published comparison group not study compared to study cohort Kipps et al.22 Retrospective 229 (A) Direct to an adult 2 years (1) Proportion with (1) Proportion with ↑ number of patients lost to cohort study clinic regular follow-up 2 yr regular clinic attendance follow-up in districts A and (B) To a young adult post-transfer fell from 98% to 61% B resulting in exclusion in clinic in a separate (2) Inter-district post-transfer; with largest final analysis introducing hospital from pediatric comparison of HbA1c declines in districts A and information bias clinic 2 yr post-transfer B Not possible to soundly (C) To young adult clinic (2) No inter-district compare HbA1c levels with introductions to difference in HbA1c found between districts with high adult physician prior to losses to follow-up in two transfer out of the four (D) To adolescent clinic jointly run with adult and pediatric physicians Johnston Case-series 33 Patients initially followed 15-18 months after (1) Attendance rates (1) 18% loss to follow-up Comparison of pre- and et al.23 in young adult clinics transfer and HbA1c before and after transfer to adult post- HbA1c levels not (16-25 yr) after transfer clinics performed Transferred to either a (2) Associations with (2) Attendance twice as Significance testing not Saturday morning clinic non-attendance likely to be better in reported on associations of or weekday clinic for Saturday clinics compared frequency of clinic visits adult care to weekday clinics (not and HbA1c levels statistically significant) Vidal et al.25 Convenience 72 Anticipatory guidance 12 months after Comparison pre- and (1) Improved HbA1c Lack of comparison group sample formal and informal transfer post- transfer: (exact values not given, workshops (1) HbA1c p <0.001) Meeting with adult staff (2) Diabetes (2) Improved diabetes monthly for first 3-6 mo knowledge self-knowledge after transfer (3) Insulin self- (3) ↑ proportion self- adjustment adjusting insulin (13% vs 48%, p <0.001)
  7. 7. Holmes-Walker Retrospective 191 Transition care 5 years Comparison pre- and (1) ↓ HbA1c 0.13% per Lack of comparison group et al.26 cohort study coordinator post-participation in visit over 1st 4 visits Decrease in DKA After hours phone program: (2) 2/3 ↓ DKA admission admissions attributed to support service (1) HbA1c rates (incidence density implementation of (2) Hospital admission ratio 0.62, p <0.05) transition program without rates for DKA accounting for confounders Van Walleghem Convenience 101 Transition care 1 years Comparison pre- and (1) Proportion with 0 Preliminary results et. al.27,28 Sample coordinator post involvement in medical visits ↓ after Statistical significance not Educational group events program: involvement in program presented (1) Number of medical (40.6% vs 26.7%) visits (2) Proportion with 0 (2) Number of diabetes educator visits ↓ diabetes educator after involvement in visits program (74.3% vs 58.4%) DKA = diabetic ketoacidosis.
  8. 8. 514 M. NAKHLA ET AL. pediatric and adult physicians. Overall, the propor- guidance regarding transfer to adult care, as well as tion of patients attending clinic at least twice per support for both parents and adolescents during the year dropped from 98% in the 2 years pre-transfer transition process. Through the implementation of to 61% in the 2 years post-transfer. The greatest the program the proportion of patients lost to declines in clinic attendance were noted among the follow-up decreased significantly to 7%. Again, patients who were either transferred to a young those lost to follow up had poorer glycemic control, adult clinic in a different hospital or among those more hospitalizations and more evidence of early directly transferred to adult care. However, this diabetes-related complications in the year prior to may be a reflection of the larger proportion of transfer. patients (particularly in one district) who were A center in Spain evaluated their transition ultimately transferred to their general practitioners education program which consisted of informal and by the second year post-transfer. The follow-up formal preparatory workshops, as well as monthly visits for this sub-group were not ascertained. visits with the adult staff for 3-6 months25. As in Nevertheless, among those in the other two the Toronto study, patients were transferred districts, a larger proportion was satisfied with their directly to adult care. The study reported transfer. As well, the group that was directly improvements in outcomes: lower HbA1c levels, transferred to adult care was the most dissatisfied improved knowledge of diabetes management and with their transfer in comparison to the other three a higher proportion of patients capable of adjusting groups (47% of patients; p = 0.004). Consistent their own insulin doses (p <0.001). with other studies14, patients lost to follow-up had Other studies have demonstrated an improve- higher mean HbA1c levels during the 2 years before ment in glycemic control and clinic attendance rate transition. No inter-district difference in post- with a transition care coordinator26-28. One center in transfer HbA1c levels was seen; however, this was Australia had a transition coordinator who arranged only measured among patients still attending the booking and rebooking of appointments, hospital clinics. Of note, confounders such as including reminder notices, for a young adults’ socio-economic status and geographic factors were clinic (for 15-25 year olds) and provided an after- not included in the analysis comparing the transfer hours phone support service26. The HbA1c levels outcomes between districts. The authors conclude dropped 0.13% per visit in the first four visits to the that transition to a young adult clinic is preferable young adults’ clinic. Preliminary evidence from to direct transfer to an adult clinic, and meeting another center in Canada demonstrated improved with staff from the adult team prior to transfer may clinic attendance with a program involving a result in improved outcomes. transition care coordinator as well as educational Another study demonstrated that despite having group events27,28. In the year prior to the imple- a young adult Saturday morning clinic (for those in mentation of the program 40.6% of participants had the 16-25 year age group), a significant proportion 0 visits/year after discharge. In the year after of patients (18%) failed to attend their appoint- implementation, the proportion of patients with 0 ments during the 2 years after transfer from the visits/year dropped to 26.7%. The statistical signifi- Saturday clinics23. No association between clinic cance of this finding was not presented. attendance and glycemic control was found. Although there is no consensus on the most The remaining studies on transition methods appropriate method of transition, strategies that examined the impact of either the presence of may improve clinic attendance rates include: transition care coordinators or the implementation implementing an educational transition program; a of various transition educational programs. In transition coordinator to aid in the transition process; follow-up to Frank’s outcome study14, in which and young adult clinics and adolescent transition 24% of their patients were lost to follow up after clinics attended by both adult and pediatric discharge, a transition education program was physicians. Further studies are required to deter- established at the Toronto center24. The program mine whether these methods of transition translate consisted of workshops providing preparatory to improved diabetes-related clinical outcomes. JOURNAL OF PEDIATRIC ENDOCRINOLOGY & METABOLISM
  9. 9. TRANSLATING TRANSITION IN DIABETES MELLITUS 515 CONCLUSIONS contributing factor to poor glycemic control in adoles- cents with diabetes. N Engl J Med 1986; 315: 215-219. Transition to adult care is a critical time for 6. Bryden KS, Peveler RC, Stein A, Neil A, Mayou RA, adolescents with diabetes mellitus. Poor transition Dunger DB. Clinical and psychological course of diabetes from adolescence to young adulthood: a longi- places them at risk for falling out of the health care tudinal cohort study. Diabetes Care 2001; 24: 1536- system and for the development or progression of 1540. preventable diabetes-related complications. Strong 7. Ball GD, Huang TT, Gower BA, Cruz ML, Shaibi GQ, evidence-based data are still lacking on the associ- Weigensberg MJ, Goran MI. Longitudinal changes in ation of transition care to clinical outcomes such as insulin sensitivity, insulin secretion, and beta-cell acute or chronic diabetes-related complications and function during puberty. J Pediatr 2006; 148: 16-22. 8. Morris AD, Boyle DI, McMahon AD, Greene SA, to glycemic control. We found the studies on MacDonald TM, Newton RW. Adherence to insulin transition care limited by their small sample sizes treatment, glycaemic control, and ketoacidosis in insulin- and by both selection and information biases. Lack dependent diabetes mellitus. The DARTS/MEMO of evidence and study limitations are mirrored in Collaboration. Diabetes Audit and Research in Tayside the literature on transition care across medical Scotland. Medicines Monitoring Unit. Lancet 1997; conditions29. Despite the limitations in the studies 350: 1505-1510. 9. Jacobson AM, Hauser ST, Willett J, Wolfsdorf JI, we reviewed, they identify an important issue in the Herman L. Consequences of irregular versus period around transition, namely that losses to continuous medical follow-up in children and follow-up are significant. These losses to follow- adolescents with insulin-dependent diabetes mellitus. J ups may be related to factors intrinsic to the stage Pediatr 1997; 131: 727-733. of adolescence; however, there are some sug- 10. Goyder EC, Spiers N, McNally PG, Drucquer M, gestions in the literature that certain models of Botha JL. Do diabetes clinic attendees stay out of hospital? A matched case-control study. Diabet Med transitional care may be effective in improving 1999; 16: 687-691. health care processes and outcomes. The lack of 11. The effect of intensive treatment of diabetes on the evidence and small sample sizes highlight the need development and progression of long-term complica- for collaboration and knowledge sharing in tions in insulin-dependent diabetes mellitus. The evaluating best practices. Diabetes Control and Complications Trial Research Group. N Engl J Med 1993; 329: 977-986. 12. Retinopathy and nephropathy in patients with type 1 diabetes four years after a trial of intensive therapy. REFERENCES The Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and 1. Blum RW, Garell D, Hodgman CH, Jorissen TW, Complications Research Group. N Engl J Med 2000; Okinow NA, Orr DP, Slap GB. Transition from child- 342: 381-389. centered to adult health-care systems for adolescents 13. Harbour R, Miller J. A new system for grading recom- with chronic conditions. A position paper of the mendations in evidence based guidelines. BMJ 2001; Society for Adolescent Medicine. J Adolesc Health 323: 334-336. 1993; 14: 570-576. 14. Frank M. Factors associated with non-compliance with 2. Mortensen HB, Hougaard P. Comparison of metabolic a medical follow-up regimen after discharge from a control in a cross-sectional study of 2,873 children and pediatric diabetes clinic. Can J Diabetes Care 1996; 20: adolescents with IDDM from 18 countries. The 13-20. Hvidøre Study Group on Childhood Diabetes. Diabetes 15. Pacaud D, et al. Transition from pediatric care to adult Care 1997; 20: 714-720. care for insulin-dependent diabetes patients. Can J 3. Urbach SL, LaFranchi S, Lambert L, Lapidus JA, Diabetes Care 1996; 20: 14-20. Daneman D, and Becker TM. Predictors of glucose 16. Pacaud D, et al. Problems in transition from pediatric control in children and adolescents with type 1 diabetes care to adult care for individuals with diabetes. Can J mellitus. Pediatr Diabetes 2005; 6: 69-74. Diabetes Care 2005; 20: 13-18. 4. Pound N, Sturrock ND, Jeffcoate WJ. Age related 17. Orr DP, Fineberg NS, Gray DL. Glycemic control and changes in glycated haemoglobin in patients with transfer of health care among adolescents with insulin insulin-dependent diabetes mellitus. Diabet Med 1996; dependent diabetes mellitus. J Adolesc Health 1996; 13: 510-513. 18: 44-47. 5. Amiel SA, Sherwin RS, Simonson DC, Lauritano AA, 18. Busse FP, Hiermann P, Galler A, Stumvoll M, Tamborlane WV. Impaired insulin action in puberty. A Wiessner T, Kiess W, Kapellen TM. Evaluation of VOLUME 21, NO. 6, 2008
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