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research-article2013
TDEXXX10.1177/0145721713513177Patient-Provider Relationships Across TransitionRitholz et al
The Diabetes EDUCATOR 40
Patient-Provider Relationships Across the Transition From Pediatric to Adult Diabetes Care A Qualitative Study Marilyn D. Ritholz, PhD
Purpose
Howard Wolpert, MD
The purpose of this study was to explore perceptions that emerging adults with type 1 diabetes (T1D) have of their patient-provider relationships across the transition from pediatric to adult care.
Meg Beste, MS, RD Astrid Atakov-Castillo, BA Donna Luff, PhD Katharine C. Garvey, MD, MPH From Joslin Diabetes Center, Boston, Massachusetts (Dr Ritholz, Dr Wolpert, Ms Beste, Ms Atakov-Castillo), Boston Children’s Hospital, Boston, Massachusetts (Dr Ritholz, Dr Luff, Dr Garvey), and Harvard Medical School, Cambridge, Massachusetts (Dr Ritholz, Dr Wolpert, Dr Luff, Dr Garvey). Correspondence to Marilyn D. Ritholz, PhD, Behavioral and Mental Health Unit, Joslin Diabetes Center, 1 Joslin Place, Boston, MA 02215, USA ([email protected]). Acknowledgments: We thank the emerging adults who contributed their time, reflections, and recommendations to this study. Funding: Dr Garvey was supported by the Agency for Healthcare Research and Quality (T32-HS000063), the National Institute of Diabetes and Digestive and Kidney Diseases (T32DK007699-30), and the William Randolph Hearst Foundation. DOI: 10.1177/0145721713513177 © 2013 The Author(s)
Methods Twenty-six emerging adults with T1D (mean age 26.2 ± 2.5 years) participated in 5 focus groups stratified by current level of glycemic control (A1C). Coded audiorecorded data were analyzed using thematic analysis and aided by NVivo software.
Results Three major themes emerged from the analysis: (1) loss and gain in provider relationships across the transition— patients expressed 3 key responses to leaving pediatric providers that differed by A1C levels: sad reluctance and “natural progression” (mean A1C ± SD 7.4% ± 0.6%) and wanting to go (mean A1C ± SD 9.8% ± 1.0%); (2) partners in care versus on one’s own—patients valued how adult providers’ collaborative conversations promoted their involvement and accountability compared to “parent-centric” interactions with pediatric providers, but they also expressed ambivalence over increased independence in adult care; (3) improving provider approaches to transition—patients recommended that pediatric
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providers actively promote emerging adults’ autonomy while maintaining parental support, communication with adult providers, and follow-up with transitioning patients.
Conclusions Findings highlight the importance of enhanced provider awareness of T1D emerging adults’ complex feelings about the transition in care. Improved integration of individual- and family-centered approaches to developmentally tailored diabetes care is needed to augment patient and provider relationships.
W
ith the increasing incidence of type 1 diabetes (T1D) in childhood and adolescence and the importance of achieving optimal glycemic control in young adulthood, the transition from pediatric to adult diabetes care has become an important area of clinical study.1,2 Transition of care for young adults with chronic illnesses is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from childcentered to adult-oriented health care systems.”3 Clinicians who treat diabetes advocate that disease-specific transition guidelines will improve the transition from pediatric to adult diabetes care,4 but there is a paucity of evidencebased research to guide clinicians in transition care.2,5,6 The term emerging adulthood has been used to describe the developmental stage from 18 to 30 years and is subdivided into an early phase corresponding to the years immediately after high school, which include geographic, economic, and emotional transitions away from the parental home (∼18-24 years) and a later phase when more traditional adult roles are assumed (∼25-30 years).7 For emerging adults with T1D, these developmental challenges are compounded by intensive disease selfmanagement requirements and transition to a new adult care system.2,5 These patients often delay establishing adult care8-10 and are at risk for poor glycemic control, adverse diabetes-related outcomes, and increased posttransition diabetes hospitalizations.11-14 A recent survey study of 258 post-transition emerging adults with T1D found that less than half received an adult provider recommendation and a significant proportion of patients
felt unprepared for transition and dissatisfied with the transition process.10 Another study found that more than half of 101 young adults interviewed considered the transfer of care a negative experience and had changed providers more than once.15 These findings on suboptimal transition coordination and patient dissatisfaction following the transition in care suggested the importance of qualitatively exploring emerging adults’ perspectives to understand in more depth the factors that may support or impede their transition from pediatric to adult providers. Although the provider-patient relationship is a key underpinning to optimal diabetes care,16-19 no studies have explored the views emerging adults with T1D have of their patient-provider relationships across the transition from pediatric to adult care. Thus, the purpose of this qualitative study was to explore perceptions emerging adults with type 1 diabetes have of their patient-provider relationships across the transition from pediatric to adult care.
Research Design and Methodology Research Design and Sample
The authors employed focus groups to gain insight into emerging adults’ shared understanding of the transition from pediatric to adult diabetes care. Focus group methodology is a qualitative technique that is used to capture attitudes, perceptions, beliefs, and expectations of small groups of participants.20,21 This approach provided information about emerging adults who had transitioned to adult care to capture their reflections, perceptions, and opinions of their lived experiences of the transition process. The Human Subjects Committee of the Institutional Review Board approved this study. The authors used purposive sampling strategies22 to identify Englishspeaking emerging adults with T1D who were diagnosed ≤18 years old, had T1D for at least 5 years, and received current diabetes care in the Adult Section of a comprehensive diabetes center in the northeastern United States. Although the diabetes center has both pediatric and adult units, there is no established structured transition of care program. Study staff contacted eligible participants and invited them to participate in the appropriate focus group. Groups were formed based on participants’ current level of glycemic control (A1C): lower A1C ≤8.5% and higher A1C >8.5%. Participants with similar A1C
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Table 1
Key Interview Questions for Transition Focus Groups 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Why did you transition from pediatric to adult diabetes care? Tell us more about your experience leaving your pediatric diabetes team. Tell us about your experiences in the adult diabetes clinic. What do you think it means to have a “successful transition” to adult diabetes care? How involved are your parents in your diabetes care now? Besides your parents or diabetes providers, who are other people in your life that you can turn to for support? How independent do you feel about taking care of your diabetes? Please describe. What do you feel are the main barriers to getting your diabetes control where you would like it to be? How did the transition to adult care change the way you feel about your diabetes? Is there anything else you would like to tell us today?
levels were grouped together to establish group homogeneity, which allows for increased compatibility, cohesion, and disclosure in focus groups23 and might decrease discomfort or competition in discussion of diabetes management. All participants provided written informed consent and received compensation for their time. Data Collection and Analysis
A structured focus group discussion guide was derived from discussions with pediatric and adult diabetes providers and a review of the literature. The guide used broad, open-ended questions to elicit wide-ranging details of the transition experience from patients’ perspectives. Further, the guide was iteratively revised after the first focus group in light of emerging topics expressed within the group (see Table 1 for key interview questions). Research investigators who designed the focus group guide included a pediatric endocrinologist, adult endocrinologist, and clinical psychologist who had extensive clinical experience with transitioning emerging adults. One of the investigators was the moderator for the focus groups, which were audio-recorded and transcribed. A second investigator was the co-moderator and wrote field notes to capture key points and observations about the discussions within the groups. At the end of
each focus group, the moderator and co-moderator met to share observations. Another research team member managed the 2 audio recorders used to record participants’ verbal interactions. Further, 3 team members transcribed focus group recordings 4 to 8 weeks following the sessions, and the focus group co-moderator performed a quality check of the transcribed files while listening to the interview recordings to validate the transcriptions. The multidisciplinary research analysis team, consisting of a clinical psychologist, pediatric endocrinologist, nutritionist diabetes researcher, and medical sociologist, met over the course of a year to analyze data according to the principles of thematic analysis.24-26 Team members had previously conducted several qualitative research studies, and 2 team members (MDR and DL), who were well versed in qualitative research methods, guided the data collection and analysis. The team independently read transcripts and initially open-coded the data by marking and categorizing key words and phrases to generate the initial codes. Initial codes were discussed and discrepancies resolved through consensus to develop the initial thematic framework, which was then applied to all the transcripts. Initial coding and revision through consensus is a common early stage in inductive thematic analysis. After transcripts were coded and reviewed, 1 member of the research team entered the marked transcripts into NVivo 8 software,27 to further organize and group codes into themes. The group then met to agree on the final themes. The team concluded that theoretical saturation was reached as no new themes were generated from later focus groups. An audit trail tracked the decision-making process and supported the dependability of the data. Results
Five 75-minute focus groups were conducted; each group consisted of 3 to 7 patients (n = 26, mean age 26.2 ± 2.5 years, mean age at transition from pediatric to adult care 20.3 ± 3.2 years, 62% female, 85% with college degree, 81% non-Hispanic white). Nine participants (35%) reported receiving their diabetes care at the pediatric unit of the same diabetes center where they presently received adult care. Of the remaining 17 participants, 8 received their diabetes care from other hospitals in the same northeastern city, 1 from a pediatrician in the same state, and 8 from pediatric providers out of state. None of the participants had participated in structured transition programs. Three groups had participants with lower mean ± SD A1C (7.4% ± 0.6 %) and 2 groups had
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participants with higher mean ± SD A1C (9.8% ± 1.0 %). Three key themes that centered on experiences of the patient-provider relationship emerged from the analysis: loss and gain in provider relationships across the transition, partners in care versus on one’s own, and improving provider approaches to transition. In the first theme, groups differed in their discussions by A1C levels, but these glycemic differences did not occur in the other 2 themes. Transcript identifiers are included with quotations indicating gender and age at transition.
Loss and Gain in Provider Relationships Across the Transition Participants expressed 3 key responses to leaving pediatric care: sad reluctance, “natural progression,” and wanting to go. Patients who described feeling “sadness” and “loss” about leaving their pediatric providers also described how their long histories with these providers made them reluctant to transition. I think the hardest thing in health care . . . is that you build the relationship with the person. . . . That is why I didn’t want to leave [pediatrics]. Like I felt like they got me and like they totally knew what I was about, and that is one of the hardest things . . . about adult care is rebuilding that relationship. (female, 25 years old, transitioned at age 23) It was just so big, the transition. . . . I had started there since I was 2 months old until 18. I mean they [pediatric providers] see you grow up. . . . They’ve seen every A1C since you were 5 or 6 years old. (female, 27 years old, transitioned at age 19)
Other patients described the move from pediatric to adult providers as a “natural progression” in their medical care. They discussed this progression in a matter-offact way; the move was expected, and it did not seem to have such an emotional impact on them.
I was ready. . . . I didn’t have that great of control, and I kind of pinned it on the fact that maybe it was the pediatric doctor I was seeing who was mostly seeing pediatric patients. So I was ready for a change and to see if I could get things better. (female, 25 years old, transitioned at age 20) I remember lying a lot when I was in pediatrics because I felt threatened by the power I felt that my doctors had over me. I felt like I was being graded and tested. . . . I had a guilty conscience . . . so I would lie. I know one of the biggest differences that has completely turned my life around for me in adult care is that I don’t lie anymore. I don’t feel like anyone’s passing judgment. (male, 23 years old, transitioned at age 18-19)
Interestingly, patients’ responses differed by glycemic control with more than half of the participants with lower A1C (mean 7.4% ± 0.6%) expressing sad reluctance, and the remaining lower A1C patients unemotionally viewing the transition as a natural progression. In comparison, more than half of those with higher A1C (mean 9.8% ± 1.0%) described wanting to leave pediatrics and transition to adult care.
Partners in Care Versus on One’s Own Participants described positive relationships with adult providers, noting greater collaboration, but some also voiced ambivalence or regret over increased autonomy in adult care. From their collaborative conversations, patients felt more “involved” and “accountable” for their adult diabetes care as compared to their pediatric diabetes care. It’s [adult care] less of the dictating and more of the collaboration, which has been good. . . . So, it’s more of a conversation rather than a, “this is what you have to do” type of thing. So that’s been helpful. (male, 24 years old, transitioned at age 18)
I think it was a natural progression. It was just kind of what I thought. You move to the Boston area, go to college . . . so it’s not forced. It’s just the next logical step. (male, 24 years old, transitioned at age 18)
I think it’s [adult care] more of a two-way conversation. . . . You know when you’re little, at least I felt, changes were kind of forced on you, and now [adult care] it’s more of looking for a solution that’s going to work with who you are and what you do. (female, 25 years old, transitioned at age 22)
On the other hand, other patients described an active desire to transition to adult care because they wanted a different approach or they felt judged.
Participants expressed a tension between partnering with adult providers and having increased responsibility for their diabetes. They further acknowledged their
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ambivalence about gaining independence and missing their parents’ advocacy when meeting with adult providers. I think in a lot of ways it [transition] was a shock for me because I never really knew of any other way. I was diagnosed so young, as far back as I can remember my parents had taken care of everything for me. So you know, independence is a scary thing as much as it is a positive thing. (male, age 23, A1C 11.3%, transitioned at age 18-19) I think that part of the issue with the adult endocrinologist versus the pediatric is that when you’re a pediatric patient, you have a parent there as well. And the parent is the advocate for the child whereas when you’re an adult, you’re your own advocate. (female, age 27 years old, A1C 7.6%, transitioned at age 23-24)
Improving Provider Approaches to Transition In preparation for the transition from pediatric to adult diabetes care, patients suggested that pediatric providers assume an active role in promoting the transition of care. They discussed the importance of pediatric providers shifting from a “parent-centric” approach and encouraged speaking directly with emerging adult patients while maintaining parental involvement. I think they [pediatric physicians] . . . knowing that you’re getting older they should not treat you in the same way. . . . You should start being able to take care of yourself. Of course, have your parents included, but at least for me, I felt that the whole time I was in pediatric care, it was kind of . . . “You’re in pediatrics; you’re a kid.” They tell my mom what you should be doing. (male, 24 years old, transitioned at age 18) I think it might have helped if there was a point . . . at which the teaching needs to be a little more independent. . . . It would have helped if the care was less parent-centric. . . . You know, less sharing with the parents and encouraging independence sort of go hand in hand. (female, 25 years old, transitioned at age 18)
Patients also noted that by shifting their focus to the emerging adult patients, providers would promote patients’ increased responsibility, greater accountability, and more independent diabetes management.
I think the pediatric providers were a lot more rainbows and butterflies in terms of describing what was going on. . . . And now [adult care] it’s more this is the reality. . . . Now you’re 100% accountable whereas before it was more of your parents. (female, 24 years old, transitioned at 20 years old)
Patients further suggested that pediatric providers use their long-term knowledge of their emerging adult patients to identify the most appropriate patient-adult provider match and further recommended that pediatric and adult providers communicate about the transitioning patient. I feel it might have been helpful to either have some sort of recommendation in place in terms of who I might want to see based on my history and medical details. I guess even just communicating with someone on the adult team to kind of bridge the transition beforehand. It doesn’t even necessarily have to be a physical meeting of everyone, just kind of communicating more. (female, 27 years old, transitioned at age 18)
Finally, patients suggested a continued role for pediatric providers after the transition to adult providers. They wanted pediatric providers to oversee the transfer to adult providers and to follow up with patients to see if the transition was successful and to take action if the transition was not successful. I think feedback once you transition. Like ask the patient how it went and what they think of their new doctor. . . . If they’d had somebody to give feedback to, like alright, “what did you think about this doctor, was he good for you?” I think that would actually help. And then if they know that . . . this person [patient] didn’t do as well as we thought with this person [adult provider], they would maybe try matching him up with another doctor. (male, 30 years old, transitioned at age 25)
Conclusions and Implications This is the first study to give voice to emerging adults’ perceptions of and insights about their patient-provider relationships in the transition from pediatric to adult diabetes care. Patients’ relationships with both pediatric and adult providers emerged from focus groups as key to their perceived transition experiences. The findings underscore the inherent complexity of patient-provider relationships across the transition and point to the need for pediatric
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providers to initiate the transition by actively engaging emerging adult patients, identifying and communicating with appropriate adult providers, and following up with patients on their initial experiences with adult providers. Further, the findings highlight that both pediatric and adult providers need to have a developmental perspective when addressing the complex and varied responses of emerging adults to transition. Differences in T1D patients’ feelings about leaving pediatric and moving to adult diabetes care may depend on their attachment styles, glycemic control, and emerging adult development. These factors are important to consider in transition planning for T1D emerging adults. Previous studies have demonstrated very close correlation between pre-transition and post-transition A1C and highlighted pediatric glycemic control as a principal driver of young adult glycemic control.10,15,28 These connections are important in interpreting themes in the present study that differed by level of glycemic control. Most patients with lower A1C levels reported sadness, loss, and reluctance to leave their long-term pediatric providers. These feelings also are reported in other studies of chronic illness patients’ transition from pediatric to adult care.29-31 However, some patients with lower A1C levels also described their transition as a “natural progression” in their development, and most patients with poorer glycemic control reported wanting to leave their pediatric providers. Research has found that patients who did not feel attached to pediatric providers reported readiness to transfer to adult care compared to those who felt attached.32 Attachment studies of adults with diabetes have found that patients who exhibit secure attachments (are comfortable depending on and seeking comfort from others) and perceive good physician-patient communication have good glycemic control, whereas those who demonstrate dismissing attachment (are uncomfortable being close to or trusting others) and perceive poor physicianpatient communication had poor glycemic control.33 In this study, patients with lower A1C levels voiced sadness about leaving their pediatric providers, suggesting a strong attachment to providers; however, despite these feelings of loss, they were able to have lower A1C levels in adult care. Conversely, patients with higher A1C levels reported wanting to leave pediatric providers, suggesting less attachment to providers; they also described feeling less judged by adult providers. Although we cannot say whether glycemic levels improved or did not
improve between pediatric and adult care, this group had high A1C levels in adult care. These findings are intriguing and suggest the need for further exploration of the interplay between patient-provider attachment and other possible factors that may contribute to emerging adult patients’ better or worse diabetes management during the transition from pediatric to adult diabetes care. Patients reported that their pediatric patient-provider experiences were “parent-centric,” which limited their ability to collaborate with providers. This finding is consistent with other studies also finding that parentprovider interactions dominated adolescent medical encounters with medical information directed at the parent.34-37 Research also has found that transition preparation needs to start early and focus on strengthening adolescents’ independence without undermining parental involvement.38 A family-focused approach that integrates both patient and family perspectives and emphasizes the relational context in which illness management occurs has been suggested for adults with chronic illnesses.39 The present study’s findings suggest a similar approach in the transition of care where both pediatric and adult providers move away from using either family or individual patient approaches and move toward a more integrative approach that effectively includes emerging adult patients and their families. Implementing such an approach during the transition may help address patients’ ambivalence about wanting independence and missing parental advocacy, which is reported in this study and several other studies of chronic illness patients’ transitions.40-43 However, further research needs to explore the specifics of integrated individual- and family-based interventions for emerging adults with diabetes. Study participants also voiced their wishes to have pediatric providers match them with appropriate adult providers and recommended that pediatric providers communicate their knowledge of emerging adult patients to adult providers when discussing the patient’s transition. Further, studies have found that few adult providers have knowledge of and expertise with chronic health conditions that begin in childhood,43-45 and there is a lack of communication between pediatric and adult providers in the transition of care for chronic illnesses other than diabetes.29 Enhanced communication between pediatric and adult providers may allow patients to feel that all their health care providers share an understanding of who they are and what they need during the transition. Providers’ communication also may contribute to
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patients’ lessened anxiety and increased security about providers’ management of their diabetes and psychosocial well-being in the course of the transition. There are several limitations to this study. The study explored participants’ recall of their transition experiences, which may include recall bias. However, the advantages of conducting focus groups with emerging adults who have already transitioned are that they can share their experiences of the process in its entirety and stress what was most important during the transition. The authors did not use member checking, respondent validation of the findings, which may have generated additional data and further insights into the plausibility of the final themes, and this is a further limitation of the study. However, in future work, surveys with larger populations of emerging adults will be used and may confirm the saliency and relevance of this study’s findings. Further, this study explored the perspectives of mostly white and well-educated emerging adults; future research needs to explore subsets of other T1D emerging adults and purposively select samples in terms of gender, age, and ethnicity as well as consider providers’ and parents’ perspectives. The inclusion of parents’ perspectives is particularly important during this transition process because they also had a long-term relationship with pediatric providers, which may influence their children’s feelings about the transition. Additionally, parents can serve an important role in preparing their children for the increasing autonomy required in the transition process. Finally, the participants all attended a comprehensive adult diabetes center in an urban setting in the United States. However, a recent population-based study of 1514 youth in the United States found that only 17% of patients >18 years received care from a generalist rather than a diabetes specialist,46 and thus the majority of type 1 diabetes emerging adults do appear to receive specialist care in the United States. Finally, programs are needed to improve the health care transition for emerging adults with T1D, particularly in the area of professional development for clinical diabetes providers. Through continuing education, providers should increase their understanding of the range of feelings emerging adults with T1D have about transitioning from pediatric to adult diabetes providers and form strategies for working with patients’ specific developmental and behavioral needs. Further, pediatric and adult providers need fuller communication about transitioning T1D patients, and reorientation in treatment approaches to integrate both individual- and family-patient care.
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20. Morgan D. Focus Groups as Qualitative Research. Newbury Park, CA: Sage; 1988. 21. Krueger R, Casey M. Focus Groups: A Practical Guide for Applied Research. 2nd ed. Thousand Oaks, CA: Sage; 2000. 22. Rice PL, Ezzy D. Qualitative Research Methods: A Health Focus. Oxford: Oxford University Press; 1999. 23. Fern EF. Advanced Focus Group Research. Thousand Oaks, CA: Sage; 2001. 24. Mays N, Pope C. Qualitative research in health care. Assessing quality in qualitative research. BMJ. 2000;1:320:50-52. 25. Boyatzis RE. Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA: Sage;1998. 26. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77-101. 27. NVivo [computer program]. Version 8. Victoria, Australia: QSR International; 2008. 28. Sparud-Lundin C, Ohrn I, Danielson E, Forsander G. Glycaemic control and diabetes care utilization in young adults with Type 1 diabetes. Diabet Med. 2008;25:968-973. 29. Hauser ES, Dorn L. Transitioning adolescents with sickle cell disease to adult-centered care. Pediatr Nurs. 1999;25:479-488. 30. Sawyer SM, Collins N, Bryan D, et al. Young people with spina bifida: transfer from pediatric to adult health care. J Paediatr Child Health. 1998;34:414-417. 31. Boyle MP, Farukhi Z, Nosky ML. Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmonol. 2001;32:428-436. 32. Miles K, Edwards S, Clapson M. Transition from pediatric to adult services: experiences of HIV-positive adolescents. AIDS Care. 2004;16:305-314. 33. Ciechanowski PS, Katon WJ, Russo JE, et al. The patient-provider relationship: attachment theory and adherence to treatment in diabetes. Am J Psychiatry. 2001;158:29-35. 34. Worobey J, O’Hair D, O’Hair MJ. Pediatrician-patient-parent communication: a descriptive analysis. Lang and Commun. 1987;7:293-301.
35. Levinson W, Roter DL, Mullooly JP, et al. Physician-patient communication: the relationship with malpractice claims among primary care physicians and surgeons. JAMA. 1997;277:553-559. 36. Aronsson K, Rundstrom B. Child discourse and parental control in pediatric consultations. Texi. 1988;8:159-189. 37. Tates K, Elbers E, Meeuwesen L, et al. Doctor-parent-child relationships: a “pas de trois.” Patient Educ Couns. 2002;48:5-14. 38. Van Staa AL, Jedello S, van Meeteren J, et al. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents, and providers. Child Care Health Dev. 2011;37:821-832. 39. Fisher L, Weihs KL. Family relationships: a key for improving outcomes in chronic disease. J Family Practice. 2000;49:561566. 40. Kirk J, Clayton P. Specialist services and transitional care in pediatric endocrinology in the UK and Ireland. Clin Endocrinol. 2006;65:59-63. 41. Moons P, Pinxten S, Dedroog D. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health. 2009;44:316-322. 42. 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;8:102-112. 43. Wray J, Maynard L. Specialist cardiac services: what do young people want? Cardiol Young. 2008;18:569-574. 44. Telfair J, Myers J, Drezner S. Transfer as a component of the transition of adolescents with sickle cell disease to adult care: adolescent, adult, and parent perspectives. J Adolesc Health. 1994;15:558-565. 45. Scal P, Evans T, Blozis S, et al. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health. 1999;24:259-264. 46. Waitzfelder B, Pihoker C, Klingensmith G, et al. SEARCH for diabetes in youth study group. Adherence to guidelines for youths with diabetes mellitus. Pediatrics. 2011;128:531-538.
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research-article2013
TDEXXX10.1177/0145721713513177Patient-Provider Relationships Across TransitionRitholz et al
The Diabetes EDUCATOR 40
Patient-Provider Relationships Across the Transition From Pediatric to Adult Diabetes Care A Qualitative Study Marilyn D. Ritholz, PhD
Purpose
Howard Wolpert, MD
The purpose of this study was to explore perceptions that emerging adults with type 1 diabetes (T1D) have of their patient-provider relationships across the transition from pediatric to adult care.
Meg Beste, MS, RD Astrid Atakov-Castillo, BA Donna Luff, PhD Katharine C. Garvey, MD, MPH From Joslin Diabetes Center, Boston, Massachusetts (Dr Ritholz, Dr Wolpert, Ms Beste, Ms Atakov-Castillo), Boston Children’s Hospital, Boston, Massachusetts (Dr Ritholz, Dr Luff, Dr Garvey), and Harvard Medical School, Cambridge, Massachusetts (Dr Ritholz, Dr Wolpert, Dr Luff, Dr Garvey). Correspondence to Marilyn D. Ritholz, PhD, Behavioral and Mental Health Unit, Joslin Diabetes Center, 1 Joslin Place, Boston, MA 02215, USA ([email protected]). Acknowledgments: We thank the emerging adults who contributed their time, reflections, and recommendations to this study. Funding: Dr Garvey was supported by the Agency for Healthcare Research and Quality (T32-HS000063), the National Institute of Diabetes and Digestive and Kidney Diseases (T32DK007699-30), and the William Randolph Hearst Foundation. DOI: 10.1177/0145721713513177 © 2013 The Author(s)
Methods Twenty-six emerging adults with T1D (mean age 26.2 ± 2.5 years) participated in 5 focus groups stratified by current level of glycemic control (A1C). Coded audiorecorded data were analyzed using thematic analysis and aided by NVivo software.
Results Three major themes emerged from the analysis: (1) loss and gain in provider relationships across the transition— patients expressed 3 key responses to leaving pediatric providers that differed by A1C levels: sad reluctance and “natural progression” (mean A1C ± SD 7.4% ± 0.6%) and wanting to go (mean A1C ± SD 9.8% ± 1.0%); (2) partners in care versus on one’s own—patients valued how adult providers’ collaborative conversations promoted their involvement and accountability compared to “parent-centric” interactions with pediatric providers, but they also expressed ambivalence over increased independence in adult care; (3) improving provider approaches to transition—patients recommended that pediatric
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providers actively promote emerging adults’ autonomy while maintaining parental support, communication with adult providers, and follow-up with transitioning patients.
Conclusions Findings highlight the importance of enhanced provider awareness of T1D emerging adults’ complex feelings about the transition in care. Improved integration of individual- and family-centered approaches to developmentally tailored diabetes care is needed to augment patient and provider relationships.
W
ith the increasing incidence of type 1 diabetes (T1D) in childhood and adolescence and the importance of achieving optimal glycemic control in young adulthood, the transition from pediatric to adult diabetes care has become an important area of clinical study.1,2 Transition of care for young adults with chronic illnesses is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from childcentered to adult-oriented health care systems.”3 Clinicians who treat diabetes advocate that disease-specific transition guidelines will improve the transition from pediatric to adult diabetes care,4 but there is a paucity of evidencebased research to guide clinicians in transition care.2,5,6 The term emerging adulthood has been used to describe the developmental stage from 18 to 30 years and is subdivided into an early phase corresponding to the years immediately after high school, which include geographic, economic, and emotional transitions away from the parental home (∼18-24 years) and a later phase when more traditional adult roles are assumed (∼25-30 years).7 For emerging adults with T1D, these developmental challenges are compounded by intensive disease selfmanagement requirements and transition to a new adult care system.2,5 These patients often delay establishing adult care8-10 and are at risk for poor glycemic control, adverse diabetes-related outcomes, and increased posttransition diabetes hospitalizations.11-14 A recent survey study of 258 post-transition emerging adults with T1D found that less than half received an adult provider recommendation and a significant proportion of patients
felt unprepared for transition and dissatisfied with the transition process.10 Another study found that more than half of 101 young adults interviewed considered the transfer of care a negative experience and had changed providers more than once.15 These findings on suboptimal transition coordination and patient dissatisfaction following the transition in care suggested the importance of qualitatively exploring emerging adults’ perspectives to understand in more depth the factors that may support or impede their transition from pediatric to adult providers. Although the provider-patient relationship is a key underpinning to optimal diabetes care,16-19 no studies have explored the views emerging adults with T1D have of their patient-provider relationships across the transition from pediatric to adult care. Thus, the purpose of this qualitative study was to explore perceptions emerging adults with type 1 diabetes have of their patient-provider relationships across the transition from pediatric to adult care.
Research Design and Methodology Research Design and Sample
The authors employed focus groups to gain insight into emerging adults’ shared understanding of the transition from pediatric to adult diabetes care. Focus group methodology is a qualitative technique that is used to capture attitudes, perceptions, beliefs, and expectations of small groups of participants.20,21 This approach provided information about emerging adults who had transitioned to adult care to capture their reflections, perceptions, and opinions of their lived experiences of the transition process. The Human Subjects Committee of the Institutional Review Board approved this study. The authors used purposive sampling strategies22 to identify Englishspeaking emerging adults with T1D who were diagnosed ≤18 years old, had T1D for at least 5 years, and received current diabetes care in the Adult Section of a comprehensive diabetes center in the northeastern United States. Although the diabetes center has both pediatric and adult units, there is no established structured transition of care program. Study staff contacted eligible participants and invited them to participate in the appropriate focus group. Groups were formed based on participants’ current level of glycemic control (A1C): lower A1C ≤8.5% and higher A1C >8.5%. Participants with similar A1C
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Table 1
Key Interview Questions for Transition Focus Groups 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Why did you transition from pediatric to adult diabetes care? Tell us more about your experience leaving your pediatric diabetes team. Tell us about your experiences in the adult diabetes clinic. What do you think it means to have a “successful transition” to adult diabetes care? How involved are your parents in your diabetes care now? Besides your parents or diabetes providers, who are other people in your life that you can turn to for support? How independent do you feel about taking care of your diabetes? Please describe. What do you feel are the main barriers to getting your diabetes control where you would like it to be? How did the transition to adult care change the way you feel about your diabetes? Is there anything else you would like to tell us today?
levels were grouped together to establish group homogeneity, which allows for increased compatibility, cohesion, and disclosure in focus groups23 and might decrease discomfort or competition in discussion of diabetes management. All participants provided written informed consent and received compensation for their time. Data Collection and Analysis
A structured focus group discussion guide was derived from discussions with pediatric and adult diabetes providers and a review of the literature. The guide used broad, open-ended questions to elicit wide-ranging details of the transition experience from patients’ perspectives. Further, the guide was iteratively revised after the first focus group in light of emerging topics expressed within the group (see Table 1 for key interview questions). Research investigators who designed the focus group guide included a pediatric endocrinologist, adult endocrinologist, and clinical psychologist who had extensive clinical experience with transitioning emerging adults. One of the investigators was the moderator for the focus groups, which were audio-recorded and transcribed. A second investigator was the co-moderator and wrote field notes to capture key points and observations about the discussions within the groups. At the end of
each focus group, the moderator and co-moderator met to share observations. Another research team member managed the 2 audio recorders used to record participants’ verbal interactions. Further, 3 team members transcribed focus group recordings 4 to 8 weeks following the sessions, and the focus group co-moderator performed a quality check of the transcribed files while listening to the interview recordings to validate the transcriptions. The multidisciplinary research analysis team, consisting of a clinical psychologist, pediatric endocrinologist, nutritionist diabetes researcher, and medical sociologist, met over the course of a year to analyze data according to the principles of thematic analysis.24-26 Team members had previously conducted several qualitative research studies, and 2 team members (MDR and DL), who were well versed in qualitative research methods, guided the data collection and analysis. The team independently read transcripts and initially open-coded the data by marking and categorizing key words and phrases to generate the initial codes. Initial codes were discussed and discrepancies resolved through consensus to develop the initial thematic framework, which was then applied to all the transcripts. Initial coding and revision through consensus is a common early stage in inductive thematic analysis. After transcripts were coded and reviewed, 1 member of the research team entered the marked transcripts into NVivo 8 software,27 to further organize and group codes into themes. The group then met to agree on the final themes. The team concluded that theoretical saturation was reached as no new themes were generated from later focus groups. An audit trail tracked the decision-making process and supported the dependability of the data. Results
Five 75-minute focus groups were conducted; each group consisted of 3 to 7 patients (n = 26, mean age 26.2 ± 2.5 years, mean age at transition from pediatric to adult care 20.3 ± 3.2 years, 62% female, 85% with college degree, 81% non-Hispanic white). Nine participants (35%) reported receiving their diabetes care at the pediatric unit of the same diabetes center where they presently received adult care. Of the remaining 17 participants, 8 received their diabetes care from other hospitals in the same northeastern city, 1 from a pediatrician in the same state, and 8 from pediatric providers out of state. None of the participants had participated in structured transition programs. Three groups had participants with lower mean ± SD A1C (7.4% ± 0.6 %) and 2 groups had
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participants with higher mean ± SD A1C (9.8% ± 1.0 %). Three key themes that centered on experiences of the patient-provider relationship emerged from the analysis: loss and gain in provider relationships across the transition, partners in care versus on one’s own, and improving provider approaches to transition. In the first theme, groups differed in their discussions by A1C levels, but these glycemic differences did not occur in the other 2 themes. Transcript identifiers are included with quotations indicating gender and age at transition.
Loss and Gain in Provider Relationships Across the Transition Participants expressed 3 key responses to leaving pediatric care: sad reluctance, “natural progression,” and wanting to go. Patients who described feeling “sadness” and “loss” about leaving their pediatric providers also described how their long histories with these providers made them reluctant to transition. I think the hardest thing in health care . . . is that you build the relationship with the person. . . . That is why I didn’t want to leave [pediatrics]. Like I felt like they got me and like they totally knew what I was about, and that is one of the hardest things . . . about adult care is rebuilding that relationship. (female, 25 years old, transitioned at age 23) It was just so big, the transition. . . . I had started there since I was 2 months old until 18. I mean they [pediatric providers] see you grow up. . . . They’ve seen every A1C since you were 5 or 6 years old. (female, 27 years old, transitioned at age 19)
Other patients described the move from pediatric to adult providers as a “natural progression” in their medical care. They discussed this progression in a matter-offact way; the move was expected, and it did not seem to have such an emotional impact on them.
I was ready. . . . I didn’t have that great of control, and I kind of pinned it on the fact that maybe it was the pediatric doctor I was seeing who was mostly seeing pediatric patients. So I was ready for a change and to see if I could get things better. (female, 25 years old, transitioned at age 20) I remember lying a lot when I was in pediatrics because I felt threatened by the power I felt that my doctors had over me. I felt like I was being graded and tested. . . . I had a guilty conscience . . . so I would lie. I know one of the biggest differences that has completely turned my life around for me in adult care is that I don’t lie anymore. I don’t feel like anyone’s passing judgment. (male, 23 years old, transitioned at age 18-19)
Interestingly, patients’ responses differed by glycemic control with more than half of the participants with lower A1C (mean 7.4% ± 0.6%) expressing sad reluctance, and the remaining lower A1C patients unemotionally viewing the transition as a natural progression. In comparison, more than half of those with higher A1C (mean 9.8% ± 1.0%) described wanting to leave pediatrics and transition to adult care.
Partners in Care Versus on One’s Own Participants described positive relationships with adult providers, noting greater collaboration, but some also voiced ambivalence or regret over increased autonomy in adult care. From their collaborative conversations, patients felt more “involved” and “accountable” for their adult diabetes care as compared to their pediatric diabetes care. It’s [adult care] less of the dictating and more of the collaboration, which has been good. . . . So, it’s more of a conversation rather than a, “this is what you have to do” type of thing. So that’s been helpful. (male, 24 years old, transitioned at age 18)
I think it was a natural progression. It was just kind of what I thought. You move to the Boston area, go to college . . . so it’s not forced. It’s just the next logical step. (male, 24 years old, transitioned at age 18)
I think it’s [adult care] more of a two-way conversation. . . . You know when you’re little, at least I felt, changes were kind of forced on you, and now [adult care] it’s more of looking for a solution that’s going to work with who you are and what you do. (female, 25 years old, transitioned at age 22)
On the other hand, other patients described an active desire to transition to adult care because they wanted a different approach or they felt judged.
Participants expressed a tension between partnering with adult providers and having increased responsibility for their diabetes. They further acknowledged their
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ambivalence about gaining independence and missing their parents’ advocacy when meeting with adult providers. I think in a lot of ways it [transition] was a shock for me because I never really knew of any other way. I was diagnosed so young, as far back as I can remember my parents had taken care of everything for me. So you know, independence is a scary thing as much as it is a positive thing. (male, age 23, A1C 11.3%, transitioned at age 18-19) I think that part of the issue with the adult endocrinologist versus the pediatric is that when you’re a pediatric patient, you have a parent there as well. And the parent is the advocate for the child whereas when you’re an adult, you’re your own advocate. (female, age 27 years old, A1C 7.6%, transitioned at age 23-24)
Improving Provider Approaches to Transition In preparation for the transition from pediatric to adult diabetes care, patients suggested that pediatric providers assume an active role in promoting the transition of care. They discussed the importance of pediatric providers shifting from a “parent-centric” approach and encouraged speaking directly with emerging adult patients while maintaining parental involvement. I think they [pediatric physicians] . . . knowing that you’re getting older they should not treat you in the same way. . . . You should start being able to take care of yourself. Of course, have your parents included, but at least for me, I felt that the whole time I was in pediatric care, it was kind of . . . “You’re in pediatrics; you’re a kid.” They tell my mom what you should be doing. (male, 24 years old, transitioned at age 18) I think it might have helped if there was a point . . . at which the teaching needs to be a little more independent. . . . It would have helped if the care was less parent-centric. . . . You know, less sharing with the parents and encouraging independence sort of go hand in hand. (female, 25 years old, transitioned at age 18)
Patients also noted that by shifting their focus to the emerging adult patients, providers would promote patients’ increased responsibility, greater accountability, and more independent diabetes management.
I think the pediatric providers were a lot more rainbows and butterflies in terms of describing what was going on. . . . And now [adult care] it’s more this is the reality. . . . Now you’re 100% accountable whereas before it was more of your parents. (female, 24 years old, transitioned at 20 years old)
Patients further suggested that pediatric providers use their long-term knowledge of their emerging adult patients to identify the most appropriate patient-adult provider match and further recommended that pediatric and adult providers communicate about the transitioning patient. I feel it might have been helpful to either have some sort of recommendation in place in terms of who I might want to see based on my history and medical details. I guess even just communicating with someone on the adult team to kind of bridge the transition beforehand. It doesn’t even necessarily have to be a physical meeting of everyone, just kind of communicating more. (female, 27 years old, transitioned at age 18)
Finally, patients suggested a continued role for pediatric providers after the transition to adult providers. They wanted pediatric providers to oversee the transfer to adult providers and to follow up with patients to see if the transition was successful and to take action if the transition was not successful. I think feedback once you transition. Like ask the patient how it went and what they think of their new doctor. . . . If they’d had somebody to give feedback to, like alright, “what did you think about this doctor, was he good for you?” I think that would actually help. And then if they know that . . . this person [patient] didn’t do as well as we thought with this person [adult provider], they would maybe try matching him up with another doctor. (male, 30 years old, transitioned at age 25)
Conclusions and Implications This is the first study to give voice to emerging adults’ perceptions of and insights about their patient-provider relationships in the transition from pediatric to adult diabetes care. Patients’ relationships with both pediatric and adult providers emerged from focus groups as key to their perceived transition experiences. The findings underscore the inherent complexity of patient-provider relationships across the transition and point to the need for pediatric
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providers to initiate the transition by actively engaging emerging adult patients, identifying and communicating with appropriate adult providers, and following up with patients on their initial experiences with adult providers. Further, the findings highlight that both pediatric and adult providers need to have a developmental perspective when addressing the complex and varied responses of emerging adults to transition. Differences in T1D patients’ feelings about leaving pediatric and moving to adult diabetes care may depend on their attachment styles, glycemic control, and emerging adult development. These factors are important to consider in transition planning for T1D emerging adults. Previous studies have demonstrated very close correlation between pre-transition and post-transition A1C and highlighted pediatric glycemic control as a principal driver of young adult glycemic control.10,15,28 These connections are important in interpreting themes in the present study that differed by level of glycemic control. Most patients with lower A1C levels reported sadness, loss, and reluctance to leave their long-term pediatric providers. These feelings also are reported in other studies of chronic illness patients’ transition from pediatric to adult care.29-31 However, some patients with lower A1C levels also described their transition as a “natural progression” in their development, and most patients with poorer glycemic control reported wanting to leave their pediatric providers. Research has found that patients who did not feel attached to pediatric providers reported readiness to transfer to adult care compared to those who felt attached.32 Attachment studies of adults with diabetes have found that patients who exhibit secure attachments (are comfortable depending on and seeking comfort from others) and perceive good physician-patient communication have good glycemic control, whereas those who demonstrate dismissing attachment (are uncomfortable being close to or trusting others) and perceive poor physicianpatient communication had poor glycemic control.33 In this study, patients with lower A1C levels voiced sadness about leaving their pediatric providers, suggesting a strong attachment to providers; however, despite these feelings of loss, they were able to have lower A1C levels in adult care. Conversely, patients with higher A1C levels reported wanting to leave pediatric providers, suggesting less attachment to providers; they also described feeling less judged by adult providers. Although we cannot say whether glycemic levels improved or did not
improve between pediatric and adult care, this group had high A1C levels in adult care. These findings are intriguing and suggest the need for further exploration of the interplay between patient-provider attachment and other possible factors that may contribute to emerging adult patients’ better or worse diabetes management during the transition from pediatric to adult diabetes care. Patients reported that their pediatric patient-provider experiences were “parent-centric,” which limited their ability to collaborate with providers. This finding is consistent with other studies also finding that parentprovider interactions dominated adolescent medical encounters with medical information directed at the parent.34-37 Research also has found that transition preparation needs to start early and focus on strengthening adolescents’ independence without undermining parental involvement.38 A family-focused approach that integrates both patient and family perspectives and emphasizes the relational context in which illness management occurs has been suggested for adults with chronic illnesses.39 The present study’s findings suggest a similar approach in the transition of care where both pediatric and adult providers move away from using either family or individual patient approaches and move toward a more integrative approach that effectively includes emerging adult patients and their families. Implementing such an approach during the transition may help address patients’ ambivalence about wanting independence and missing parental advocacy, which is reported in this study and several other studies of chronic illness patients’ transitions.40-43 However, further research needs to explore the specifics of integrated individual- and family-based interventions for emerging adults with diabetes. Study participants also voiced their wishes to have pediatric providers match them with appropriate adult providers and recommended that pediatric providers communicate their knowledge of emerging adult patients to adult providers when discussing the patient’s transition. Further, studies have found that few adult providers have knowledge of and expertise with chronic health conditions that begin in childhood,43-45 and there is a lack of communication between pediatric and adult providers in the transition of care for chronic illnesses other than diabetes.29 Enhanced communication between pediatric and adult providers may allow patients to feel that all their health care providers share an understanding of who they are and what they need during the transition. Providers’ communication also may contribute to
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patients’ lessened anxiety and increased security about providers’ management of their diabetes and psychosocial well-being in the course of the transition. There are several limitations to this study. The study explored participants’ recall of their transition experiences, which may include recall bias. However, the advantages of conducting focus groups with emerging adults who have already transitioned are that they can share their experiences of the process in its entirety and stress what was most important during the transition. The authors did not use member checking, respondent validation of the findings, which may have generated additional data and further insights into the plausibility of the final themes, and this is a further limitation of the study. However, in future work, surveys with larger populations of emerging adults will be used and may confirm the saliency and relevance of this study’s findings. Further, this study explored the perspectives of mostly white and well-educated emerging adults; future research needs to explore subsets of other T1D emerging adults and purposively select samples in terms of gender, age, and ethnicity as well as consider providers’ and parents’ perspectives. The inclusion of parents’ perspectives is particularly important during this transition process because they also had a long-term relationship with pediatric providers, which may influence their children’s feelings about the transition. Additionally, parents can serve an important role in preparing their children for the increasing autonomy required in the transition process. Finally, the participants all attended a comprehensive adult diabetes center in an urban setting in the United States. However, a recent population-based study of 1514 youth in the United States found that only 17% of patients >18 years received care from a generalist rather than a diabetes specialist,46 and thus the majority of type 1 diabetes emerging adults do appear to receive specialist care in the United States. Finally, programs are needed to improve the health care transition for emerging adults with T1D, particularly in the area of professional development for clinical diabetes providers. Through continuing education, providers should increase their understanding of the range of feelings emerging adults with T1D have about transitioning from pediatric to adult diabetes providers and form strategies for working with patients’ specific developmental and behavioral needs. Further, pediatric and adult providers need fuller communication about transitioning T1D patients, and reorientation in treatment approaches to integrate both individual- and family-patient care.
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