Bridging the Gap: Patient Experiences Following Transfer of Care from a Pediatric Obesity Management Program to an Adult Bariatric Surgery Program

Abstract

Introduction:

Obesity rates are increasing to epidemic proportions across the lifespan. However, young adults (18 to 24 years old) experience unique difficulties in psychosocial functioning compared to other age groups. These difficulties result in significant physical and mental health complications during the transition process from pediatric to adult care hospitals.

Objectives:

(1) To identify themes regarding the experiences of obese young adults (18–24) transferring their care from a pediatric obesity management program to an adult bariatric surgery program; (2) to identify the transition difficulties of these young adults upon transfer; and (3) to understand how developmental needs within this population impact experiences of the transition process.

Method:

In-depth, semistructured individual interviews were conducted on seven young adult bariatric patients who had transitioned their obesity management care from the pediatric to adult healthcare system. Analysis of interviews used a constant comparative analysis consistent with a grounded theory approach.

Results:

Our data analysis generated the following themes: (1) loss and adaptation; (2) transition processes from pediatric to adult healthcare; and (3) in-between adolescence and adulthood.

Conclusions:

Results suggest that young adults experience both positive and negative aspects regarding the transition process. These experiences may be understood in the context of the literature on emerging adulthood in terms of patients' developmental stage and how this impacts their perception and needs within the adult healthcare system compared to the pediatric model of care.

Introduction

The obesity epidemic stretches across the lifespan with prevalence numbers cited as high as 17% for youth in the United States and more than 30% for adults.¹ Surgical intervention for severe obesity (e.g., gastric bypass) has been found to improve quality of life and psychosocial functioning in adolescents^2,3 and has been found to be both safe and effective.⁴

As described by Shrewsbury et al.,⁵ the difficulties of sustaining healthy dietary and lifestyle habits in young adulthood must be understood in the context of developmental transitions. These include the following: increasing independence, identity formation, evolving support systems (i.e., from parental to peer), as well as vocational and educational changes.⁶ These life transitions often interfere with adherence issues during medical interventions. For example, medication compliance in young adulthood is often cited as the cause of graft loss in transplant recipients.^7,8 Specific to bariatric surgery, vitamin supplementation adherence following adolescent bariatric surgery (i.e., ages 13–19) was found to be poor, according to results from electronic medication adherence monitoring.⁹ Overall, these types of adherence difficulties can result in significant physical complications.

Another type of transition is transfer of care from pediatric to adult healthcare systems, often when an individual is 18 years old. Healthcare transition guidelines (i.e., consensus statements and committee guidelines) have been published for various chronic conditions (i.e., organ transplantation, diabetes care, and special care needs). Common recommendations include the following: transition information should be provided at least 1 year preceding transfer and, if possible, during early adolescence^10,11; a transition champion (i.e., coordinator) should be utilized to organize transition issues and services^11–13; transfer of healthcare should gradually shift from parents to older teens before transfer^10–12; programs should utilize specialized transitions clinics^11,12; information regarding different cultures of pediatric versus adult hospitals should be provided¹⁰; and an assessment of readiness for transfer, as well as a summary of key medical and psychosocial information about the patient, should be communicated to the receiving adult center (i.e., current medical issues; medications taken; mental health difficulties) before transfer.^10–12,14

In terms of patient outcomes, one study found that incorporation of transition initiatives improved patient knowledge, self-management skills with respect to health-related behaviors,¹³ and health-related quality of life for individuals with juvenile idiopathic arthritis.¹³ Another study looked at the impact of a variety of transition services for adolescents with Type I diabetes. These services included the following: transition coordinator; summary of information transferred from pediatric to adult healthcare center; transition clinics; and a pediatrician taking part in the initial adult healthcare system appointment.¹⁵ Patients in this program reported improved glycemic control, enhanced appointment adherence, increased satisfaction from services as well as attendance within the adult healthcare system occurring earlier.¹⁵ Most recently, a study examining the impact of transition clinic attendance for kidney transplant patients found improved renal function as well as overall adherence 1 year after transfer of care occurred.¹⁶

Little research exists regarding transition programs/guidelines for obesity management treatment. A recent article by Shrewsbury et al.⁵ performed a systematic review to better learn about empirical research conducted on transition experiences of overweight and obese adolescents who were transferring care from pediatric to adult weight management interventions. They found a dearth of research in this area and uncovered only “a few clinical guidelines and statements that contained brief recommendations on this topic”⁵ (p. 477). Of key importance for this study was the idea that a “transition pathway” (p. 478) within the medical system often does not exist. Our program set out to develop a specialized model of care to allow young adults seeking obesity management to successfully transfer from pediatric to adult care and be able to receive developmentally appropriate care within an adult care setting. Our aim was to create best practices for this age group that could be shared among other healthcare providers treating this unique population. In this study, we explored the transition and transfer experiences of young adults (ages 18–24 years) who transferred their care from a pediatric setting within the last 2 years and engaged with our transition program at the Toronto Western Hospital-Bariatric Surgery Program (TWH-BSP). We used qualitative methods to understand and document young adult patients' experiences of the services they received and any potential unmet psychosocial needs.

Materials and Methods

Participant sampling and characteristics

A partnership program has been established between the TWH-BSP and the SickKids Team Obesity Management Program (STOMP). STOMP provides both medical and surgical intervention for weight loss for individuals between the ages of 14 and 18 (medical intervention begins at age 12). Patients that reach 18 years within the course of treatment at STOMP and have been nominated for surgery are then eligible to transfer their care to the TWH-BSP to receive surgical intervention for weight loss and follow-up care. Any patient seeking surgical weight loss must be referred to STOMP or TWH-BSP through a centralized provincial surgery registry called the Ontario Bariatric Network (OBN). Preoperative patients are referred to the TWH-BSP if they have a body mass index ≥40 or ≥35 kg/m² with one or more obesity-related comorbidities. For a patient who has already undergone surgery at STOMP and turns 18, they are eligible to be transferred directly to TWH-BSP and are then able to receive follow-up and postoperative care within our center.

The transition program between TWH-BSP and STOMP includes transition champions on both the pediatric and adult side, increased frequency of postsurgery follow-up appointments, and provider consistency (i.e., the patient meets with the same nurse, social worker, dietitian, or psychologist each visit). A young adult support group was piloted in the first year of the transition program (i.e., 2012–2013), but was eventually closed due to poor attendance. In 2015, a transition clinic began in which the transition champion from TWH-BSP spends time at STOMP with patients that will soon be transferring. This occurred toward the end of the recruitment period and only impacted our final participant. During this clinic, both verbal and written information was provided to patients about the clinic and the team.

Seven transfer patients who were previously at STOMP within the last 2 years and now maintain their care at TWH-BSP were purposively sampled for this study. Over 20 years ago, the World Health Organization defined “young people” as being 10–24 years old and then further broke this down into three, 5-year subdivisions.¹⁷ We have chosen to define young adulthood for the purposes of this article as the time period between 18 and 24 years, given that 18 years old is typically the time of transfer of care from pediatric to adult systems within Canada. Approval was obtained for this study from the Institutional Research Ethics Board at the University Health Network in Toronto, Canada.

Data collection

Purposive recruitment of the participants took place at both TWH-BSP and STOMP. Eligible participants were approached by a clinician at their clinic appointments or at the TWH-BSP bimonthly support group, as well as with recruitment flyers posted in the TWH-BSP clinic waiting room. Individuals who expressed interest were contacted by the study research assistant for an individual interview. No participants declined to participate after expressing interest. The research assistant (a psychology student) was trained in qualitative interviewing by an expert qualitative methodologist and obtained informed consent. She did not work with the patients in any other manner and, therefore, had no prior relationship with them. She conducted all interviews between November 2013 and February 2015 either in person or by telephone if it was inconvenient for the participant to be physically present. Four interviews were conducted in person at TWH-BSP, and three interviews were conducted by phone from a secure and private room since travel to the hospital was prohibitive for these participants. Participants were provided with the credentials of the research assistant. Each interview lasted ∼1 h.

This study was part of a larger study looking at the needs of young adult patients within the bariatric healthcare system. The interview guide was made up of questions, which addressed young adult needs from both a clinic development and psychosocial perspective, and a specific section of the interview guide (five questions) was devoted to the transition and transfer process. This study focused solely on the transition and transfer experiences of young adults from a pediatric healthcare facility (STOMP) to adult healthcare facility (TWH-BSP). Interviews were semistructured and questions were modified based on an iterative process. Field notes were used to gather general impressions of the interview. Trustworthiness of the data was verified by asking study participants to comment on the authenticity of the results through a process of “member-checking”.¹⁸

Approach and data analysis

All interviews were audio recorded, transcribed verbatim, and imported into HyperRESEARCH (Version 3.7.1; Computer Software, Researchware, Inc., 2014). A grounded theory methodology^19–21 was used to analyze the data. A primary and secondary coder analyzed the data with attention to emerging themes. In the first phase, the primary coder (the study research assistant/psychology student) analyzed the text and assigned “meaning units” (MUs) to pinpoint meaningful words or sentences. The secondary coder (first author of the study/psychologist) reviewed these MUs and engaged with the primary coder in a constant comparative process. The second phase of coding involved defining MUs and solidifying them as codes. During the third phase, codes emerged into broader themes and a hierarchical framework was established. At each stage of coding, the primary and secondary coder discussed MUs, definitions of codes and categories, and emerging themes. If the existing categorical framework did not adequately capture the MU, the categories were revised, omitted, or added. When conflict arose regarding interpretation of the data, a third member of the research team (a psychiatrist) mediated a conversation until consensus was reached. The data were considered saturated when no new themes emerged.

Results

Emergent themes from data

We found three major themes emerging from the seven interviews that were conducted with the patients that transferred their care from STOMP: (1) loss and adaptation; (2) transition processes from pediatric to adult healthcare; and (3) in-between adolescence and adulthood. Demographics of the study participants are in Table 1.

Table 1.

Summary of Participant Characteristics

Participant number	Gender	Age at interview (years)	Surgery status at interview (pre-op or post-op)	Presurgery BMI (kg/m ² )
1	Female	20	Post-op	68.00
2	Female	19	Pre-op	47.29
3	Female	18	Pre-op	45.85
4	Female	20	Post-op	46.9
6	Female	21	Post-op	64.56
8	Female	25	Pre-op	54.01
10	Female	20	Post-op	45.49
12	Female	26	Post-op	44.99
13	Male	20	Post-op	58.74

All participants were between the ages of 18–24 years at the time of referral to an adult hospital for obesity management care.

BMI, body mass index; Post-op, postoperative; Pre-op, preoperative.

Theme 1: loss and adaptation

Different cultures of care

During the interviews, participants mentioned challenges experienced, such as differences in “compassion” between the two hospitals and scheduling conflicts. Interestingly, participant 12 (a nontransfer patient) commented on the care she received at a pediatric center and compared it to the care she now receives at an adult hospital:

But I really wish that still being younger, that I could almost go back to [the pediatric hospital] because of the treatment. As nice as people are here, it was just a different level of compassion that they have for the kids there and the way that they respond to being scared. I'm still terrified of needles, and at [the pediatric hospital] they understood that.

Participant 13 also spoke about the pediatric healthcare system having a “gentler touch” compared to the adult healthcare system:

“With the kids program, they're very gentle, they're very soft, they don't push you very hard. They push you affirmatively, but not jaggedly, not really rough. And they're helpful and they give more kids more leeway, like when I told you I was having problems with the diet.”

Desiring ongoing parental support

Despite the fact that participants had transferred their care to an adult hospital, they still spoke about wanting the type of parental support they had when they were attending the pediatric center. For example, parental assistance for attending appointments (e.g., help waking up in the morning and rides to appointments) was noted. Participant 13 spoke about the challenges of relying on parents to help reach appointments:

“Also some of these kids, they don't have cars or they don't drive yet, so they need their parents to help them get down [i.e., downtown to their appointments]. Their parents don't get off until 5 or 6. So I think later is better. I know the people who work here don't want to work at 8 o'clock, but if I were to say a time, anything after 5 PM is better.”

Participant 2 also spoke to the idea of wanting the parental support to remain consistent:

“I'm really close with my mom and she will take things—like she will, um, do things for me without really asking. Like in that she would make appointments for me, um, whereas people expect me to make appointments now and its weird.”

Theme 2: transition process from pediatric to adult healthcare

Transition bridging

Many participants indicated that they wanted more information to help clarify expectations about the new program and the new healthcare team. Participant 2 and 4 endorsed wanting more information as well as “what will be expected of us and what we can expect from the team (participant 4).” This participant also indicated the following:

“I think that it's a [pause] um—it's a very direct move. I had almost wished there was something in between like a high school.”

Participant 3 spoke about the different relationships that had been formed on both the pediatric and the adult side and what was helpful about that:

“[Name of transition contact person at adult hospital] seemed very polite when I met her the last couple of times and she seemed very welcoming, very concerned, and very happy that I was making this decision to have this surgery…and then [Name of transition contact person at pediatric hospital] also because she said you know even though you graduated from [pediatric hospital] you know I'm still here for you whenever you need an appointment or therapy or whatever you need I'm here. So I would definitely say those two. They're both very welcoming and very caring about the whole situation.”

Participant 13 spoke about the lack of clarity with respect to the transfer process:

“The one thing I would just say is try and streamline the process and make it more clear. Because I'd ask [name] how does this work? And she'd say ‘I don't know.’ They know but they don't know. There's no process, there's no… they said it was spring and then it was summer. I just want more streamline. Okay here's the date you come in, you do your intake evaluations, and after that you're in the system, and then here's the meetings, here's when your 6 month is. If they could streamline it better instead of it being this wishy-washy thing, because I'm sort of still with the STOMP program and I'm with them. It's not been smooth.”

Participant 1 also spoke about how she felt the transfer was abrupt and she was not necessarily prepared for when it actually happened. Overall, it was clear that participants wanted more knowledge about the eventual handover in care to allow them to feel better prepared.

Transition champion

Participants indicated that they valued having someone that they could speak to regarding the transition and transfer process. They also were pleased when this person was able to offer coordination of appointments. For example, participant 4 indicated the following:

“And I think to help coordinate the appointments, [adult transition champion] has been amazing so far, and I would love to keep talking with her and having her help me, and as my contact to everyone.”

Participant 13 indicated the following:

“The psychologist from the [adult] program…She met with me personally and I told her what I was looking for, like with medical things. That's what I did. I met with them and I got an idea.”

Theme 3: in-between adolescence and adulthood

Identity formation

Many participants spoke to the idea that they had not quite figured out who they were and how this impacted their adaptation to the adult hospital system. There was discussion regarding how adult healthcare providers might not be as sensitive to this developmental stage. For example, participant 2 said the following:

“And also just that we are, um, we can be more insecure. We can be…we're figuring out who we are as people and we don't know exactly where were going. So sometimes you just need to be a little more sensitive toward them.”

Participant 5 indicated the following: “I guess we're just in a time of transition.” Participant 8 even likened this to concrete issues, such as not being accustomed to having days that are regularly scheduled and how this might impact having appointments within the hospital:

“I think it's, we don't have schedules that are as set. I feel like if you have a 9-5, you have to book the afternoon off. That's not so much the case so it's easier to forget. A lot of us don't have a lot of appointments, so were not as good at scheduling appointments.”

Overall, it appeared as if participants were hoping for more sensitivity regarding the fact that they might not yet know exactly who they are and how this could result in feelings of insecurity when needing help from healthcare providers within an adult hospital setting.

Irresponsibility

Similar to the concept of identity formation and being in between adolescence and adulthood, participants also spoke about still wanting to be “irresponsible.” Participant 6 said the following: “…it's hard to choose the responsible thing when you want to do the irresponsible thing.” Participant 8 (who was not actually a transfer patient) also commented on the idea of being more irresponsible at this age: “Probably, I feel like young adults are less likely to follow through with the requirements of the program. Just due to lack of responsibility or again, moving around a lot.”

Discussion

This study investigated the experiences of young adult patients who were seeking bariatric surgery or had undergone this procedure and, in both situations, had recently transferred their care from a pediatric hospital to adult healthcare. Our participants shared both positive and challenging experiences regarding the transition and transfer process. For example, some expressed the need for information sooner and felt it was important to have a transition champion. Our transition champion provided a connection to the adult healthcare system just before the transfer of care. She spoke with patients, offered her contact information, and followed the patients closely–often checking in with respect to appointments and general satisfaction with the program. Although this individual was a psychologist, she viewed this role as being a combination of administrative support, clinical care, and patient guidance. This fits well with previous literature, suggesting the importance of what is often referred to as a transition coordinator.^11–13 Our recruitment occurred over 2 years and, therefore, coincided with the development of our transition program. Therefore, it is encouraging to hear aspects of the program that were well received.

A recent international Delphi study was conducted to try and determine key components to successful transfer from pediatric to adult healthcare.²² The panel agreed on six elements as being crucial to this process. A central factor was “assuring a good coordination between pediatric and adult professionals” (p. 615). This fits well with the current opinions expressed in this study, voiced by patients, regarding the importance of communication and coordination as one bridges their care from pediatric to adult healthcare.

A novel theme that emerged from our data was young adults being “in between adolescence and adulthood” and how this impacted the transition process. The theory of emerging adulthood emphasizes how individuals between the ages of 18 and 25 experience identity explorations during this period of time and can result in feeling “in-between” (p. 39).²³ This has been studied in a variety of developed countries, most recently Denmark, and suggests that young adults often find themselves as being “on the way” (p. 42) to adulthood, but not having quite reached it.²⁴ Our participants described themselves as being “in-between” a variety of life areas—their identity, their sense of responsibility, as well as their actual position within the healthcare system. Given these feelings, they often expressed a desire for adult healthcare professionals to provide treatment that would take into consideration this challenging developmental period. This could involve the following: the way in which information is provided to patients (i.e., longer appointments to allow for more questions if patients are feeling insecure about self-management); scheduling appointments for young adults in a manner that meets their changing lifestyles; as well as awareness about encouraging making lifestyle changes that might not necessarily fit with those of their peer group. Our results revealed that young adults still crave indulging in what they considered to be “irresponsible behavior”—such as making poor food choices after surgery or wanting to use alcohol. Given this awareness, healthcare providers might allow for enhanced conversation and open dialogue regarding high-risk behaviors. It is also important to consider how this irresponsibility might impact adherence to attending appointments or taking nutritional supplements—both of which play a role in helping bariatric patients maintain successful weight loss^9,25,26

This study does have limitations. The majority of participants were predominantly female, which is similar to the general Canadian bariatric population, cited at 80%.²⁷ Therefore, further examining males undergoing this transition would be important. It was, however, found that the opinions expressed by our male participant was similar to those of our female participants and no new themes emerged from that interview. A second limitation was that our transfer participants were purposively sampled from a specific pediatric center and, given the transition program is in its early stages, there was not a large sample of patients to sample from. Nevertheless, we achieved data saturation with this sample size of seven participants and, given the narrow scope of this study, we do believe that our seven participants provided us with a very rich overview of their experiences within the process of transition. In addition, the current findings did not examine associations between patient outcomes and transition initiatives. Therefore, future research could focus on longitudinal studies that evaluate patients' outcomes related to a variety of transition initiatives, including changes in weight loss as well as quality of life.

Our findings suggest that the experiences of individuals undergoing transition of care in obesity management fit well with the findings in the literature from other chronic healthcare conditions. In addition, our findings also strongly support the literature on emerging adulthood^23,24,28 as our participants often cited feeling in between a variety of stages in their life, including healthcare. It is our hope that understanding these processes within young adult patients will contribute to provision of obesity treatment and aid in seamless transition from the pediatric to the adult healthcare system.

Footnotes

Acknowledgments

We would like to thank Dr. Marion Olmsted for providing mentorship and support throughout this project. We would also like to thank the University Health Network, Department of Psychiatry Research Grant Competition 2013, for providing funding to support this project. We would also like to acknowledge our patients for agreeing to participate in this study and the Toronto Western Hospital Bariatric Interdisciplinary team and STOMP team for their ongoing support. We would also like to thank the Ministry of Health of Ontario and the Ontario Bariatric Network for their ongoing psychosocial program funding.

Author Disclosure Statement

No competing financial interests exist.

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