| | How Adult Specialists Deal with the Principles of a Successful TransitionReceived 23 February 2009; accepted 28 May 2009. published online 08 July 2009.
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Growing Up and Getting Old(er) With Childhood-Onset Chronic Diseases: Paving the Way to Better Chronic Illness Care Worldwide
Megumi J. Okumura
Journal of Adolescent Health
December 2009 (Vol. 45, Issue 6, Pages 541-542)
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Abstract ObjectivesTo evaluate whether adult specialists comply with the basic principles for a successful transition of adolescents with chronic disorders, and to determine whether the characteristics of the adult specialists have an influence on applying these principles. MethodsOut of 299 adult specialists in four French-speaking Swiss cantons, 209 (70%) answered a paper-and-pencil mailed questionnaire between May and July 2007. Only those having received the transfer of at least one adolescent in the previous 2 years (N = 102) were included in the analysis. We analyzed four dependent variables: discussing common concerns of adolescent patients, seeing the patient alone, having a transition protocol, and having a previous contact with the pediatric specialist. A logistic regression was performed for each dependent variable controlling for the physicians' characteristics (number of transfers, age, gender, workplace, and perceived experience). ResultsFifty-four percent of the physicians did not spend time alone with their patients, and sensitive issues such as sexuality or substance use were not widely discussed with their young patients. Most respondents (59%) did not have an established protocol, and 54% did not have any contact with the pediatric specialist. In the multivariate analyses, the adult specialists' characteristics had little impact. ConclusionsFor many adolescents with chronic disorders the transition from pediatric to adult healthcare seems to be limited to a simple transfer, often lacking adequate communication between physicians. Applying simple but basic principles such as a good coordination between providers would probably improve the quality of healthcare of adolescents with chronic illness. Today, most children with chronic conditions survive at least into young adulthood [1], and the issue of transition from pediatric to adult healthcare has raised increasing attention. Transition is not limited to a simple transfer of care. Transition is a coordinated and organized process that aims at optimizing the health of adolescents with chronic illness so that they can attain their maximum potential [2], [3]. Nevertheless, the literature on the domain is limited [4]: few studies exploring the opinions of adolescents and their families have been published [5], [6], [7], [8], [9], [10], and research on the opinion of health professionals [6], [11], [12] is scarce, mostly referring to the field of pediatrics, and based on small samples. The few studies focusing on the adult physicians' point of view regarding the care of young adults with childhood chronic illness are based on samples of general internists [13] or specialists in single diseases [14], [15]. In its position article on transition [2], the Society for Adolescent Medicine states that the basic principles for a successful transition are: (a) to have services appropriate for chronologic age and developmental attainment, (b) to address common concerns of young people, (c) to enhance autonomy, (d) to have individualized and flexible enough programs to meet the needs of young people and their families, and (e) to have a designated professional that takes responsibility for the process together with the patient and the family. To date, there are no data regarding to what extent these principles apply to adult specialists dealing with young people. To fill this gap, and to assess whether adult medical specialists are appropriately prepared to take over care for adolescents with chronic illness, the aims of this research were: (a) to determine the level of communication between pediatric and adult specialists, (b) to evaluate whether adult specialists comply with the above-mentioned principles of transition, and (c) to ascertain whether the adult specialists' individual characteristics (such as age, gender, workplace, number of transfers, or perceived experience) have an influence on the process of transition. Methods  Using the Web site of the Swiss Medical Association, we drew a list of all adult specialists (N = 299) in cardiology, endocrinology, gastroenterology, nephrology, neurology, pulmonology, and rheumatology from four French-speaking cantons of Switzerland (Vaud, Jura, Neuchâtel, and Fribourg). These cantons were chosen because the University Hospital in Lausanne is their referring tertiary care center. Through postal mail, each specialist received a letter introducing the study and a 20-item questionnaire (available, in French, upon request) specifically designed and validated (content validity) for this study. If the specialist did not wish to answer the questionnaire, he/she was asked to return a slip indicating the reason why. The study protocol was approved by the ethics committee of the University of Lausanne's Medical School. After three waves were sent (at monthly intervals) between May and July 2007, 209 (70%) responses were obtained. Among them, 40 adult specialists (19%) indicated that they did not wish to fill in the questionnaire. The two main reasons for not filling in the questionnaire were because they did not treat any adolescents (N = 29) and because they did not have time (N = 3). Of the 169 adult specialists who completed the questionnaire, only 102 indicated having received the transfer of at least one adolescent patient in the previous 2 years and were included in the analyses. The communication level between the pediatric and the adult specialist was assessed through a combination of two questions: do you have a joint consultation with the pediatric specialist? (always/other), and does the pediatric specialist contact you personally before transferring an adolescent patient? (yes/no). A new variable (previous contact) was created: the physicians always doing a joint consultation and/or having a contact being included in the yes category, whereas those answering negatively to both questions were included in the no category. To assess whether adult specialists comply with the basic principles of transition, it was analyzed whether (a) they had a transition protocol, (b) they addressed common concerns of young people, and (c) whether they were supportive in enhancing the adolescents' autonomy. Common concerns of young people were assessed by asking the respondents whether or not they discussed on a routine basis the following nine subjects with their young patients: nutrition, school/work, impact of disease on daily life, family issues, tobacco use, alcohol use, use of illegal drugs, sexuality, and emotional well-being. Autonomy was assessed through the question of whether they saw the patient alone (without the parents being present) at least during part of the consultation. To determine whether adult specialists' individual characteristics such as age, gender, workplace, number of transfers, or perceived experience had an influence, a binary logistic regression was performed for each one of the four above-mentioned variables. In each regression the following independent variables were included: number of transfers in the previous 2 years (one to four, five or more); age range (≥50 years/<50 years), gender, workplace (at least part-time in a hospital/private practice only), and perceived experience with young people (fair to a lot/little or none). Data were analyzed using SPSS 15.0 (SPSS Inc., Chicago, IL). Results  Overall, 53% of our sample was aged 50 years or over, 84% were males, 69% worked at least part time in a hospital, less than a third considered having experience treating adolescents, and three out of every four had received one to four transfers in the previous 2 years (Table 1). Slightly over half (54%) of the surveyed adult specialists did not have any contact with their pediatric counterpart, and 59% did not have an established protocol. Less than half of respondents (46%) spent some time alone with their young patients. Regarding the issues routinely discussed with their young patients, although 85% of respondents talked about the impact of the disease on daily life, only one in four discussed sexuality (Table 2). In the multivariate analysis (Table 3), discussing on a regular basis nutrition, impact of the disease on daily life, tobacco use, illegal drugs use, sexuality, parents being present during the consultation, not having an established protocol, and having a previous contact with the pediatric specialist were independent of the physician's characteristics. Discussing school/work showed a trend towards being more frequent among experienced specialists (p = .051). Discussing family issues was significantly associated with perceived experience, whereas alcohol use was less frequently dealt with by those working in a hospital. Experienced physicians and females were more likely to talk about emotional well-being, whereas those in the upper age range were less likely to tackle the issue. | ∗ p = .051. |
Discussion  Taken as a whole, our findings indicate that the principles of a good transition are not applied well enough among adult specialists and that the level of communication between pediatric and adult specialists is insufficient. As noted by Soanes and Timmons [5], the transition from pediatric to adult care for adolescents with chronic illness seems to occur more by default than design. More than half of our sample did not spend time alone with their young patients, even though it is considered a good way to encourage self-management skills [16], [17], an opportunity to establish independence from family [5], and is correlated with a successful transfer [18]. In fact, adolescents with chronic illness feel comfortable seeing the provider without their parents [17]. This result is quite surprising when one of the main differences between pediatric and adult units is that the former are family centered, whereas the latter are patient centered [17], [19]. This finding could also explain why sensitive topics are often not tackled, given that when patients are seen together with their parents it is difficult to discuss such issues. As reported among pediatric and adult physicians [20], [21], [22], sensitive issues such as sexuality and substance use were not widely discussed with adolescent patients. Zack et al [23] found similar results among patients with cystic fibrosis and indicated that more patients wanted to discuss these issues than actually had the opportunity to do so. In fact, patients also indicated that the information they received on sensitive topics is usually poor [5]. It could be hypothesized that, as these patients are often cared for both by a primary care physician and a specialist, the latter may consider that such issues are discussed with the former, even though chronically ill youth seem to consider their specialist as their primary source of healthcare [24]. Also, in a study among general internists [13], over half of them reported that adolescents with chronic illness should be treated by specialists. Although it is clear that the process of transition must involve primary care physicians [25], a good coordination between specialists and primary care providers may facilitate opportunities for adolescent patients to discuss sensitive issues [23]. Unfortunately, only 4 out of every 10 adult specialists in our study had an established transition protocol with their pediatric colleagues, albeit the literature indicates that having a transition plan is an important issue for healthcare professionals [11] and one of the key elements for a successful transition [26], [27]. Although this figure is higher than previously reported [28], [29], it is still very low, and having an established protocol would most probably enhance the collaboration between specialists. The collaboration between pediatric and adult specialists was considered sporadic in previous publications [16], and our results seem to confirm this. Even though ongoing communication and documentation are two of the core elements for a successful transition identified both by healthcare professionals [11] and patients [23], less than half of our sample reported having had any personal contact with the pediatric specialist before or during the transfer from pediatric to adult healthcare. This result in is line with previous publications [28]. In our sample, feeling experienced seemed to play a certain role in the way adult specialists approach young patients. The literature [13] indicates that internists, as well as pediatricians, with experience in treating adolescent patients with chronic diseases feel more comfortable with the management of these patients. However, it may well be that they are comfortable with the way they care medically for their patients but not necessarily in addressing psychosocial issues, as it is easier for providers to concentrate on the chronic condition alone than to give anticipatory guidance [30]. Age, gender, workplace, or the number of transfers do not seem to play a significant role either. The lack of training could be a global explanation to our results. In their study comparing general internists and general pediatricians, Okumura et al [13] described that internists were more likely than pediatricians to report that insufficient training limited their ability to provide care to chronically ill young patients. In fact, their conclusion was that general internists are not comfortable treating this specific age group. The fact that the patient population of adult services is aging [6], [31], and that many internal medicine curricula do not include aspects of care for chronically ill young patients could explain the difficulty in dealing with these patients. Actually, in the adult healthcare system these patients are extremely young compared to the average patient [6]. Nonetheless, a research on Swiss physicians' training needs in adolescent medicine [32] found that only 43% of general practitioners and 29% of internists reported being interested in issues related to better communicating with adolescents and 48% and 40% of them, respectively, in the management of chronic conditions. Overall, the characteristics of the adult specialists had little influence on the their application of successful transition principles. Contrary to our results, Telfair et al [15] found that female providers were significantly more likely to demonstrate transition. However, in their study of primary care pediatricians, Burke et al [28] also found that age, gender, and practice setting were not associated to the experiences of the pediatricians in their sample. Our research has some limitations that need to be mentioned. First, although larger than in previously published research [6], [11], [12], our sample is still relatively small, mainly because we decided to only include adult specialists who had had at least one transfer in the previous 2 years. Nevertheless, if we take into account that “not seeing adolescent patients” was the main reason for the adult specialists not wanting to answer the questionnaire, it could be assumed that absence of adolescent patients in the consultation may also be the reason for an important percentage of nonrespondents and that, in fact, we have gathered data on the majority of adult specialists dealing with adolescent patients. Second, we did not collect any information about the adult specialists' relationship with the primary care providers of their patients. Therefore, it is possible that some of the analyzed principles of a successful transition are taken care of by primary care physicians. In our sample of adult specialists, transition from pediatric to adult healthcare for adolescents with chronic illness seems to be limited to a simple transfer. Applying simple but basic principles such as providing an age-appropriate consultation style, establishing communication pathways, and good coordination of management duties would probably improve the quality of care of these chronically ill young patients. Transition protocols may be helpful in putting these necessities into action. The final outcome would be a better care for these young patients and their families. Acknowledgments  The authors thank the Wyeth Foundation, Switzerland, for funding this project. References  [1]. [1]Yeo M, Sawyer S. Chronic illness and disability. BMJ. 2005;330(7493):721–723. [2]. [2]Rosen DS, Blum RW, Britto M, et al. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33(4):309–311.
CrossRef
[3]. [3]Rosen DS. Transition of young people with respiratory diseases to adult health care. Paediatr Respir Rev. 2004;5(2):124–131. Abstract | Full Text |
Full-Text PDF (129 KB)
[4]. [4]Freed GL, Hudson EJ. Transitioning children with chronic diseases to adult care: current knowledge, practices, and directions. J Pediatr. 2006;148(6):824–827. Full Text |
Full-Text PDF (74 KB)
|
CrossRef
[5]. [5]Soanes C, Timmons S. Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. J Child Health Care. 2004;8(2):102–112. MEDLINE |
CrossRef
[6]. [6]Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115(1):112–120. [7]. [7]Westwood A, Henley L, Willcox P. Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives. J Paediatr Child Health. 1999;35(5):442–445. [8]. [8]Craig SL, Towns S, Bibby H. Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis. Int J Adolesc Med Health. 2007;19(3):333–343. [9]. [9]Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics. 2005;115(6):1607–1612. [10]. [10]Shaw KL, Southwood TR, McDonagh JE. Young people's satisfaction of transitional care in adolescent rheumatology in the UK. Child Care Health Dev. 2007;33(4):368–379. MEDLINE |
CrossRef
[11]. [11]Por J, Golberg B, Lennox V, et al. Transition of care: health care professionals' view. J Nurs Manag. 2004;12(5):354–361. MEDLINE |
CrossRef
[12]. [12]Lundin CS, Danielson E, Ohrn I. Handling the transition of adolescents with diabetes: participant observations and interviews with care providers in paediatric and adult diabetes outpatient clinics. Int J Integr Care. 2007;7:e05. [13]. [13]Okumura MJ, Heisler M, Davis MM, et al. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. J Gen Intern Med. 2008;23(10):1621–1627.
CrossRef
[14]. [14]Flume PA, Anderson DL, Hardy KK, Gray S. Transition programs in cystic fibrosis centers: perceptions of pediatric and adult program directors. Pediatr Pulmonol. 2001;31(6):443–450. MEDLINE |
CrossRef
[15]. [15]Telfair J, Alexander LR, Loosier PS, et al. Providers' perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease. J Health Care Poor Underserved. 2004;15(3):443–461. MEDLINE |
CrossRef
[16]. [16]Kennedy A, Sloman F, Douglass JA, Sawyer SM. Young people with chronic illness: the approach to transition. Intern Med J. 2007;37(8):555–560.
CrossRef
[17]. [17]Tuchman LK, Slap GB, Britto MT. Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev. 2008;34(5):557–563.
CrossRef
[18]. [18]Reid GJ, Irvine MJ, McCrindle BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics. 2004;113(3, Pt 1):e197–e205. [19]. [19]Watson AR. Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol. 2005;20(2):113–117.
CrossRef
[20]. [20]Robertson LP, McDonagh JE, Southwood TR, Shaw KL. Growing up and moving on. A multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care. Ann Rheum Dis. 2006;65(1):74–80. MEDLINE |
CrossRef
[21]. [21]Yeo MS, Bond LM, Sawyer SM. Health risk screening in adolescents: room for improvement in a tertiary inpatient setting. Med J Aust. 2005;183(8):427–429. [22]. [22]Brown JD, Wissow LS. Discussion of sensitive health topics with youth during primary care visits: relationship to youth perceptions of care. J Adolesc Health. 2009;44(1):48–54. [23]. [23]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(5):376–383. MEDLINE |
CrossRef
[24]. [24]Britto MT, Garrett JM, Dugliss MA, et al. Preventive services received by adolescents with cystic fibrosis and sickle cell disease. Arch Pediatr Adolesc Med. 1999;153(1):27–32. MEDLINE [25]. [25]Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck?. Arch Dis Child. 1999;81(3):271–275.
CrossRef
[26]. [26]Viner RM. Transition of care from paediatric to adult services: one part of improved health services for adolescents. Arch Dis Child. 2008;93(2):160–163.
CrossRef
[27]. [27]American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians–American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6, Pt 2):1304–1306. [28]. [28]Burke R, Spoerri M, Price A, et al. Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clin Pediatr (Phila). 2008;47(4):347–354.
CrossRef
[29]. [29]McDonagh JE, Shaw KL, Southwood TR. Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis. J Child Health Care. 2006;10(1):22–42. MEDLINE |
CrossRef
[30]. [30]Callahan ST, Winitzer RF, Keenan P. Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease. Curr Opin Pediatr. 2001;13(4):310–316. MEDLINE |
CrossRef
[31]. [31]Cherry DK, Woodwell DA, Rechtsteiner EA. National Ambulatory Medical Care Survey: 2005 summary. Adv Data. 2007;387:1–39. [32]. [32]Kraus B, Stronski S, Michaud PA. Training needs in adolescent medicine of practising doctors: a Swiss national survey of six disciplines. Med Educ. 2003;37(8):709–714. MEDLINE |
CrossRef
a Research Group on Adolescent Health, Institute of Social and Preventive Medicine, University of Lausanne, Lausanne, Switzerland b Adolescent Medicine Unit, University Children's Hospital, Zurich, Switzerland Address correspondence to: Joan-Carles Suris, M.D., Ph.D., Research Group on Adolescent Health, Institute of Social and Preventive medicine, University of Lausanne, Bugnon 17, 1005 Lausanne, Switzerland.
PII: S1054-139X(09)00209-2 doi:10.1016/j.jadohealth.2009.05.011 © 2009 Society for Adolescent Medicine. Published by Elsevier Inc. All rights reserved. | |
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