Transition in Type 1 diabetes mellitus from a tertiary pediatric center: what are we doing before they walk out the door?

Transcription

1 RESEARCH ARTICLE Trasitio i Type 1 diabetes mellitus from a tertiary pediatric ceter: what are we doig before they walk out the door? Summary Poits Mary White*1, Michele A O Coell1 & Fergus J Camero1 There is o gold stadard model of care o which to base the service provisio of trasitioal care i Type 1 diabetes. A plaed approach to the trasitio of these youth is essetial. Youth should be ecouraged to cotiue medical review i a specialist settig. The provisio of a comprehesive medical summary should be stadard for all trasitioig youth, ad is a practical aspect of care that ca readily be improved upo. Accurate cotact details for both the youth ad their geeral practitioer are ecessary so that our adult colleagues ca esure optimal cliic follow-up post-trasitio. Summary Aims: Plaed trasitio to adult services i the form of a formal writte documet should be stadard practice i the maagemet of youg adults with chroic disease. The aim of this audit was to provide details o the process of trasitio i youth with Type 1 diabetes mellitus at the Royal Childre s Hospital, Melboure, Austrailia. Methods: This was a retrospective review of patiets with Type 1 diabetes mellitus who trasitioed from the Royal Childre s Hospital betwee Jue 2009 ad Jue Results: A total of 180 youth were trasitioed from pediatric services at the Royal Childre s Hospital to adult hospital services durig this time. The mea (± stadard deviatio) age of trasfer was 18.4 ± 0.7 years, ad the majority of youth were trasitioed to ceters withi the Melboure metropolita area. Pertiet cliical details were ofte missig from trasitio referral letters, which were set i oly 82.8% (149/180) of cases. Trasitio occurred i a apparetly uplaed way or without physicia iput for 30.6% (55/180) of youth i this cohort. Discussio: A high stadard of referral documetatio should be routie for all trasitioig youth, to serve as a itroductio to our adult colleagues ad to provide a comprehesive medical summary. Emphasis should be placed o the iclusio of accurate cotact details to allow for optimal follow-up. Trasitio of medical care is defied as a purposeful plaed process that addresses the medical, psychosocial ad educatioal eeds of adolescets ad youg adults with chroic physical ad medical coditios as they move from child-cetered to adult-orieted healthcare systems. Specific itervetios ca aid egagemet with services, but the effects may be sustaied oly for the duratio of the itervetio [1,2] ad ofte there is a high drop-out rate The Murdoch Childre s Research Istitute at The Royal Childre s Hospital, 50 Flemigto Road, Parkville, Victoria 3152, Australia *Author for correspodece: Tel.: ; Fax: ; mary.white@rch.org.au /DMT Future Medicie Ltd Diabetes Maage. (2012) 2(5), part of ISSN

2 RESEARCH ARTICLE White, O Coell & Camero otwithstadig the implemetatio of specialist support [3,4]. Despite widespread commetary o the trasitio of youth with Type 1 diabetes mellitus (T1DM) [5 7] ad ecouragig reports [8 10], a uiversally suitable approach to the trasitio of these youg adults has ot yet bee defied. Disegagemet from hospital services is associated with poor cliical outcomes (as determied by glycated hemoglobi [HbA1c] values), a icreased disease burde ad eglect of diabetes maagemet [11,12], ad as such, efforts should be made to retai youth with T1DM withi the hospital system. A survey of trasitio at the Royal Childre s Hospital (RCH) i Melboure, Australia performed 10 years ago highlighted the fact that oly 49% of youg adults with chroic medical coditios were either trasferred or had a trasfer pla to a adult hospital [13]. Sice the, well-defied geeric priciples of trasitio ad cosesus guidelies for T1DM trasitio have bee published, highlightig the importace of writte trasfer plas [14 16]. The RCH diabetes cliic provides a typical protocol-drive model of care with review at hospital cliics every 3 moths, cosistet with atioal ad iteratioal guidelies. Historically, trasitio of diabetes care has occurred after completio of secodary schoolig (high school). Various models to ehace trasitio outcomes have bee trialed at RCH, icludig trasitio symposia, olie educatioal material, adult physicias workig withi the RCH cliic ad RCH staff attedig youg adult diabetes cliics withi some of the receivig adult hospitals. Despite this, follow-up data suggests that up to 30% of youg adults with T1DM are lost to follow-up withi 2 years of trasitio from our pediatric cliic, which is ot dissimilar to other reported series [17 20]. Curret trasitio practice at the time of writig ivolves a discussio betwee the treatig physicia ad the youth regardig the most appropriate adult referral ceter, followed by the dictatio of a trasitio referral letter at the time of the fial RCH cliic visit. I order to uderstad the atecedets to suboptimal trasitio outcomes we aimed to describe the patiet ad treatmet characteristics at the time of trasitio ad to evaluate the quality of trasitio documetatio, which has ot previously bee assessed from a diabetes perspective. The aim of this audit was to provide details o the process of trasitio i youth with T1DM at RCH. 380 Diabetes Maage. (2012) 2(5) Methods This was a retrospective descriptive audit. Data were retrieved from a combiatio of our established T1DM database, the hospital s off-site dictatio facility (Ozescribe PTY Ltd 2011, Victoria, Australia) ad the hospital s electroic scaed medical record facility. Charts were reviewed to documet: Mea age of trasitio to adult services Mea duratio of diabetes prior to trasitio Glycemic cotrol at the time of trasitio Isuli regime at the time of trasitio Adult service/istitutio of referral Mode of referral (i.e., was a trasitio letter dictated or ot?) Mea frequecy of cliic attedace i the 12 moths prior to trasitio Level of cliical detail provided by trasitio letters The date of the last RCH diabetes cliic was take as the poit of trasitio. The adult diabetes service to which each youth was referred was idetified from the trasitio letter where available. Youth were subdivided ito groups accordig to trasitio letter status. Plaed trasitio was defied as dictatio of a trasitio letter up to 30 days after the fial RCH visit. Uplaed trasitio occurred after this time ad a desigatio of uilateral cessatio of care was made where o trasitio letter was available. Cliicias idetified 12 key pieces of iformatio (date of diagosis, mode of presetatio, atibody status at diagosis, curret isuli regime, previous isuli regimes, curret HbA1c, previous HbA1c, comorbidities/geeral medical history, complicatio status, geeral practitioer details, copy of the letter to the youth or their family ad mobile cotact umber for the youth) that should reasoably be icluded i a trasitio letter. The quality of the referral letter cotet was the determied usig a scorig system (maximum of 12 marks), with oe mark give for referece to each of the above. Complicatio status refers to the diabetesspecific assessmet that icludes retial examiatio, blood pressure measuremet, serum cholesterol, urea ad electrolytes, ad uriary microalbumiuria. HbA1c was measured usig HPLC io exchage (Bio-Rad, D10; Bio-Rad Laboratories Ic., CA, USA). Studet s t-test future sciece group

3 Trasitio i Type 1 diabetes mellitus from a tertiary pediatric ceter (cotiuous variables) or c2 aalysis (compariso of proportios) were used to compare the uplaed ad uilateral cessatio of care groups to the theoretically ideal plaed, where a p-value of <0.05 was cosidered sigificat. Istitutioal approval was grated by the RCH huma research ethics committee i July 2011 (HREC 31147A). Results Data extractio was carried out o July A search of the RCH diabetes database idetified all active ad iactive youth aged years ( = 897). From these, 180 youth (male = 99) with T1DM were idetified as havig had their most recet RCH diabetes cliic visit July 2009 Jue 2011, defiig the timig of trasitio. Age (mea ± stadard deviatio) at trasitio was 18.4 ± 0.7 ( ) years, with duratio of diabetes of 8.6 ± 4.4 ( ) years ad media HbA1c of 8.2% (rage: %). HbA1c 7.5% was attaied i 56 out of 180 youth (31.1%). Isuli regimes cosisted of cotiuous subcutaeous isuli ifusio i 56 out of 180 (31.15%), multiple daily ijectios i 92 out of 180 (51.1%), twice-daily free-mixed isuli i 23 out of 180 (12.8%) ad twice-daily premixed isuli i 9 out of 180 (5%). The adult referral ceter was detailed i either the diabetes database or withi the cotet of the trasitio referral letter for 165 out of 180 (91.7%) youth. The majority of youth were referred to tertiary ceters ( = 151, 91.5%), with the remaider referred to either private edocriologists ( = 6, 3.6%) or regioal ceters ( = 8, 4.8%). I the 12 moths prior to trasitio, youth had a mea cliic attedace frequecy of 3.2 ± 0.9 appoitmets (rage: 1 5), with o correlatio betwee cliic attedace frequecy ad the pretrasitio HbA1c (correlatio coefficiet = -0.02). Trasitio letters were available for 149 out of 180 (82.8%) youth who atteded cliics ivolvig te cliicias (six cosultats, four fellows). Plaed trasitio was iitiated for 125 out of 180 (69.4%) youth, with trasitio letters dictated prior to, o the day of, or withi 1 30 days of the last cliic visit for 12, 91 ad 22 youth, respectively. Uplaed trasitio occurred for 24 youth (13.3%), with letters dictated more tha 30 days after the trasitio poit. Table 1, provides a summary of the patiet characteristics of the subgroups. Uilateral cessatio of care ( = 31) occurred whe trasitio was either: ot metioed i ay record of future sciece group RESEARCH ARTICLE hospital cotact ( = 11); apparetly plaed by the treatig physicia (as per the case otes) but without a esuig letter ( = 12); reported to have occurred by exteral sources ( = 3); or occurred with allied health telephoe cotact without physicia iput ( = 5). The iterval (mea ± stadard deviatio) sice the last RCH review of this group at the time of data extractio was 1.2 ± 0.4 years (rage: ). The overall mea score of the quality of these letters was 7.9 out of a maximum of 12 marks with o differece see betwee plaed ad uplaed trasitio letters (8.0 vs 7.7, p = 0.6). I descedig order of frequecy, the percetage of trasitio letters that referred to each of the stated cliical details was: curret isuli regime i 97.6%; complicatio status i 90.4%; curret HbA1c i 89.6%; previous HbA1c i 84%; mode of presetatio i 71.2%; date of diagosis i 66.4%; geeral practitioer details i 60.8%; previous isuli regimes i 56.8%; atibody status i 48%; the presece/absece of comorbidities or geeral medical issues i 47.2%; a copy to the family/youth i 42.4%; ad mobile cotact umber for the youth i 8.8%. Discussio This report describes the trasitioig group from the RCH diabetes cliic to adult diabetes care services over a 2-year period. The youg adults described are a typical Australia adolescet T1DM cohort i terms of their age ad HbA1c at the time of trasitio i a uiversal healthcare system. Give the represetative ature of the group ad formulaic model of care withi the RCH diabetes cliic, there appears to be o idiosycratic characteristic of either the cliicias or the overall patiet group that would mitigate agaist successful trasitio plaig. The observatio that diabetes care at RCH was termiated i a apparetly abrupt or uplaed maer i approximately oe-third of patiets is a particular cause for cocer. Withi this cohort, 31 patiets (or 17%) had o trasitio letter ad thus appear to have uilaterally withdraw from tertiary hospital diabetes care prior to formal trasitio. These youth are youger, ad their media HbA1c is higher tha that of the other groups. Give that they appear to have disegaged from pediatric hospital cliics, this may be a uderestimatio of their true glycemic cotrol

4 RESEARCH ARTICLE White, O Coell & Camero Table 1. Characteristics of various patiet groups whe last see at Royal Childre s Hospital, Melboure, Austrailia. Patiet characteristics Patiets who had letters dictated <30 days of last cliic visits Plaed trasitio = 125 Patiets who had letters dictated >30 days of last cliic visit Uplaed trasitio = 24 Patiets who had o trasitio letter at all Uilateral cessatio of care = 31 Age at trasitio (mea years ± SD) Duratio of diabetes (mea years ± SD) Media HbA1c (%) Number of cliic visits per year i 12 moths prior to trasitio (mea ± SD) Percetage o two ijectios per day (umber) Percetage o MDI (umber) Percetage o CSII (umber) 18.5 ± ± ± ± 0.6* 8.0 ± ± ± 1.0** 9.3 ± * 2.8 ± 0.8* 14.4% (18) 52.8% (66) 32.8% (41) 20.8% (5)** 41.6% (10)** 37.5% (9)** 29% (9)** 66.7% (16)** 19.3% (6)** The p-values are plaed compared with uplaed ad cessatio of care. No sigificat differeces were see betwee uplaed ad cessatio of care groups. *p < 0.05; **p CSII: Cotiuous subcutaeous isuli ifusio; HbA1c: Glycated hemoglobi; MDI: Multiple daily ijectios; SD: Stadard deviatio. Our rates of writte trasfer letters (82.8%) are a improvemet o those previously reported at RCH [13], but the quality of letters is variable. Whilst the majority of writte letters cotai approximately eight out of 12 key pieces of iformatio, may omitted sigificat relevat cliical iformatio. The fact that approximately oe-third of letters did ot iclude a date of diagosis or the family doctor cotact details, ad half of letters did ot metio presece or absece of comorbidities, is disappoitig. There appears to be o differece i quality betwee plaed ad uplaed trasitio letters so the cotext i which the letter was writte appears ot to be a cotributig factor. The issue of the quality of trasitio letters ca potetially be improved, but the rate of disegagemet of youth from the cliic settig prior to formal discharge from pediatric services may ot be so easily remedied. While the fidigs of this i-house audit may ot be directly relevat to the wider edocriology commuity, it serves to highlight several importat issues. Trasfer is the evet of movig from pediatric to adult services, whereas trasitio refers to the process that precedes ad follows this time poit. From previous data, 30% of RCH patiets are lost after trasitio to adult services [17], but the follow-up iformatio pertaiig to this particular cohort is ot available. There is o gold stadard model of trasitioal care o which to base cliical practice. Expert cosesus advises that it should be a plaed ad dyamic process [16,21], givig the opportuity to prepare ad ivolve youth i the ecessary decisios [22]. I the absece of 382 Diabetes Maage. (2012) 2(5) follow-up data or a formal trasitio program, this study uses the trasfer poit to determie the timig of trasitio. This is a iheretly flawed premise as it does ot allow for a prologed disegagemet from services i the uilateral cessatio of care group. However, a mea time iterval of 1.2 years sice last review supports the hypothesis that these youth had i fact disegaged from our service ad that their most recet cliic visit was i fact the fial oe. The fact that the allied health team had bee iformed about egagemet with adult services without playig a active role i the plaig of this process for some of this group reflects the itetio of these youth to disegage from pediatric care. Deficiecies i the process of trasitio from pediatric services have log bee recogized by cliicias o both sides of the trasitio pathway. A more plaed process may improve cliic drop-out rates ad the use of proforma-style letters may ehace the quality ad cosistecy of trasitio letters that is provided to our adult colleagues ad has recetly bee itroduced ito our cliics. A formal writte trasitio referral documet, detailig all relevat medical details, is a prerequisite i order to summarize pediatric medical care ad to serve as a focus poit for the first adult cliic cosultatio. It is particularly importat to esure documetatio of accurate cotact details for both youth ad their treatig geeral physicia. This will allow adult cliicias to optimize their ability to iform youth of scheduled appoitmets, ad is of crucial importace for the follow-up of o attedaces. Assessmet of the impact of future sciece group

5 Trasitio i Type 1 diabetes mellitus from a tertiary pediatric ceter improvemets i documetatio would require prospective studies i order to demostrate whether or ot this measure has a positive effect o losses to follow-up. The itetio of the authors was to focus o a practical aspect of the trasitio process that should be a fudametal part of routie cliical care. I cotrast to may other aspects of trasitioal care it is also readily ameable to chage, regardless of the availability of resources or healthcare system. I this era of icreasig healthcare iformatio techology ad electroic records, access to medical iformatio of patiets with chroic diseases should be more readily available i order to facilitate the provisio of accurate ad comprehesive trasitio documets [23,24]. Costat review of patiets approachig the age of trasitio, with early discussio of follow-up optios, should be stadard practice for all cliicias. Trasitio issues eed Refereces 2 Couper JJ, Taylor J, Fotherigham MJ, Sawyer M. Failure to maitai the beefits of home-based itervetio i adolescets with poorly cotrolled Type 1 diabetes. Diabetes Care 22(12), (1999). Icreased outpatiet cotact improves metabolic outcomes i adolescets with Type 1 diabetes for the duratio of the itervetio. Svore BM, Butler D, Levie BS, Aderso BJ, Laffel LMB. Reducig acute adverse outcomes i youths with Type 1 diabetes: a radomized, cotrolled trial. Pediatrics 112(4), (2003). Camero FJ. Teeagers with diabetes. Maagemet challeges. Aust. Fam. Physicia 35(6), (2006). 4 Viseti K, Koch T, Kralik D. Adolescets with Type 1 diabetes: trasitio betwee diabetes services. J. Cli. Nurs. 15(6), (2006). 5 Weissberg-Bechell J, Wolpert H, Aderso BJ. Trasitioig from pediatric to adult care: a ew approach to the postadolescet youg perso with Type 1 diabetes. Diabetes Care 30(10), (2007). Comprehesive editorial o the approach to trasitioal care i Type 1 diabetes. future sciece group M White researched data ad drafted the mauscript. MA O Coell cotributed to the discussio, wrote the mauscript ad reviewed /edited the mauscript. FJ Camero cotributed to the discussio ad reviewed/edited the mauscript. Fiacial & competig iterests disclosure The authors have o relevat affiliatios or fiacial ivolvemet with ay orgaizatio or etity with a fiacial iterest i or fiacial coflict with the subject matter or materials discussed i the mauscript. This icludes employmet, cosultacies, hooraria, stock owership or optios, expert t estimoy, grats or patets received or pedig, or royalties. No writig assistace was utilized i the productio of this mauscript. 7 De Beaufort C, Jarosz-Chobot P, Frak M, De Bart J, Deja G. Trasitio from pediatric to adult diabetes care: smooth or slippery? Pediatr. Diabetes 11(1), (2010). 8 Holmes-Walker DJ, Llewelly AC, Farrell K. A trasitio care programme which improves diabetes cotrol ad reduces hospital admissio rates i youg adults with Type 1 diabetes aged years. Diabet. Med. 24(7), (2007). 9 Va Walleghem NM, MacDoald CA, Dea HJ. Evaluatio of a systems avigator model for trasitio from pediatric to adult care for youg adults with Type 1 diabetes mellitus. Diabetes Care 31(8), (2008). 10 Nakhla M, Daema D, To T, Paradis G, Guttma A. Trasitio to adult care for youths with diabetes mellitus: fidigs from a Uiversal Health Care System. Pediatrics 124(6), e1134 e1141 (2009). 11 Vier RM. Trasitio of care from paediatric to adult services: oe part of improved health services for adolescets. Arch. Dis. Child. 93(2), (2008). 12 Keedy A, Sloma F, Douglass JA, Sawyer SM. Youg people with chroic illess: the approach to trasitio. Iter. Med. J. 37(8), (2007). A case maager itervetio i Type 1 diabetes ca decrease hospital presetatios. 3 Author cotributios Vier RM. Trasitio of care from paediatric to adult services: oe part of improved health services for adolescets. Arch. Dis. Child. 93(2), (2008). 1 to be addressed before our patiets walk out the door of pediatric care. 6 Papers of special ote have bee highlighted as: of iterest RESEARCH ARTICLE Commetary o the trasitio of youth with chroic illesses. 13 Lam P-Y, Fitzgerald BB, Sawyer SM. Youg adults i childre s hospitals: why are they there? Med. J. Aust. 182(8), (2005). A report of a audit of youth aged over 18 years i a tertiary pediatric hospital. 14 Crowley R, Wolfe I, Lock K, McKee M. Improvig the trasitio betwee paediatric ad adult healthcare: a systematic review. Arch. Dis. Child. 96(6), (2011). 15 Court JM, Camero FJ, Berg-Kelly K, Swift PG. Diabetes i adolescece. Pediatr. Diabetes 10(Suppl. 12), (2009). 16 Peters A, Laffel L. Diabetes care for emergig adults: recommedatios for trasitio from pediatric to adult diabetes care systems: a positio statemet of the America Diabetes Associatio, with represetatio by the America College of Osteopathic Family Physicias, the America Academy of Pediatrics, the America Associatio of Cliical Edocriologists, the America Osteopathic Associatio, the Ceters for Disease Cotrol ad Prevetio, Childre with Diabetes, The Edocrie Society, the Iteratioal Society for Pediatric ad Adolescet Diabetes, Juveile Diabetes Research Foudatio Iteratioal, the Natioal Diabetes Educatio Program, ad the Pediatric Edocrie Society (formerly Lawso Wilkis Pediatric Edocrie Society). Diabetes Care 34(11), (2011). 17 Positio statemet o trasitioal care i Type 1 diabetes (USA). Northam EA, Li A, Fich S, Werther GA, Camero FJ. Psychosocial well-beig ad fuctioal outcomes i youth with Type

6 RESEARCH ARTICLE White, O Coell & Camero diabetes 12 years after disease oset. Diabetes Care 33(7), (2010) Psychosocial follow-up of youth 12 years after the diagosis of Type 1 diabetes. Kipps S, Bahu T, Og K et al. Curret methods of trasfer of youg people with Type 1 diabetes to adult services. Diabet. Med. 19(8), (2002). Pacaud D, Yale JF, Stephure D, Trussell R, Davies HD. Problems i trasitio from pediatric care to adult care for idividuals with diabetes. Ca. J. Diabetes 29(1), (2005). Cliical practice guidelie ad literature review (Caada) Busse FP, Hierma P, Galler A et al. Evaluatio of patiets opiio ad metabolic cotrol after trasfer of youg adults with Type 1 diabetes from a pediatric diabetes cliic to adult care. Horm. Res. 67(3), (2007). Rose DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Trasitio to adult health care for adolescets ad youg adults with chroic coditios. J. Adolesc. Health 33(4), (2003). Va Staa AL, Jedeloo S, Va Meetere J, Latour JM. Crossig the trasitio chasm: experieces ad recommedatios for improvig trasitioal care of youg adults, Diabetes Maage. (2012) 2(5) parets ad providers. Child Care Health Dev. 37(6), (2011). 23 New JP, Hollis S, Campbell F et al. Measurig cliical performace ad outcomes from diabetes iformatio systems: a observatioal study. Diabetologia 43(7), (2000). 24 Smith SA, Murphy ME, Huschka TR et al. Impact of a diabetes electroic maagemet system o the care of patiets see i a subspecialty diabetes cliic. Diabetes Care 21(6), (1998). future sciece group