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ORIGINAL ARTICLE Understanding Age-based Transition Needs: Perspectives from Adolescents and Adults with Congenital Heart Disease Keila N. Lopez, MD, MPH,*† Melissa Karlsten, MPH,* Francesca Bonaduce De Nigris, PhD,* Jason King, PhD,* Katherine Salciccioli, MD,* Alice Jiang,† Ariane Marelli, MD,‡ Adrienne H. Kovacs, PhD,§ Michael Fordis, MD,* and Deborah Thompson, PhD* *Department of Pediatrics, Section of Pediatric Cardiology, Baylor College of Medicine, †Wiess School of Natural Sciences, Rice University, Houston, Tex, USA, ‡McGill Adult Unit for Congenital Heart Disease, McGill University Health Center, Montreal, §Congenital Cardiac Centre for Adults, University Health Network, University of Toronto, Toronto, Canada ABSTRACT

Objective. The purpose of this study was to explore the transition process in congenital heart disease (CHD) care through the perceived needs and concerns of adolescents (pretransition) and the experiential insight from adults (post-transition), in order to inform future transition initiatives and information delivery methods. Design. In this cross-sectional study, adolescents and adults with moderate or complex CHD participated in semistructured telephone interviews. Interview transcripts were coded using NVivo qualitative data software. Setting. Single large urban tertiary care CHD center Patients. Adolescents (between 16 and 20 years of age) and adults (21–40 years of age) with moderate or complex CHD. Patients with global developmental delay or known chromosomal abnormalities were excluded. Twenty adolescents and 20 adults participated in the study; each interview allowed for participants to discuss issues relevant to them. Results. Among adolescents, half wanted more CHD information and half were concerned about becoming adults with CHD. All adolescents had access to the Internet via a mobile phone, but only 55% had searched online for CHD information. Adolescents were interested in mentorship with other adolescents (90%) and adults (60%) with CHD either in person or via protected social media. Among adults, 55% were satisfied with the amount of information they had received as adolescents. Areas in which adults would have preferred additional information include longer-term implications of CHD, employment, insurance, family planning, and mental health. Conclusions. There are similarities and differences in the perceived transition needs of a diverse group of adolescents and adults with CHD. Both cohorts desire additional information during the transition process, including interest in use of a transition checklist to learn about managing their CHD. Adolescents are interested in interactions with other teens and adult mentors with CHD and are open to Internet-based interventions. Web-based initiatives could deliver CHD information and provide a platform for social media mentorship. Key Words. Congenital Heart Disease; Transition Medicine; Adolescent; Internet; Qualitative Analysis

Introduction

C

hildren born with congenital heart disease (CHD), particularly those with moderate to

Funding: There was no grant funding associated with this work. Financial disclosure: The authors have no financial relationships relevant to this article to disclose. C 2015 V © 2015 Wiley Periodicals, Inc.

severe CHD, are a high-cost, resource-intensive group, with US hospitalization costs totaling ∼$1.4 billion in 2004 alone.1 Around 85% of children with CHD are reaching adulthood, with a resultant significant rise in the number of US CHD adults estimated to exceed one million.2–6 Many CHD survivors are palliated but not cured,7 and require life-long surveillance and disease management to have healthy, productive lives. This Congenit Heart Dis. 2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

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large and emerging population has created a need for appropriate medical care transition between the pediatric realm and the adult realm. Transition is defined as the “purposeful and planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.”8 Adolescents with CHD have particularly unique medical and emotional needs throughout their lives, making successful transition from pediatric to adult-centered care critical to reduce lapses in care.9,10 Further, one must fully incorporate the additional contexts of developmental progression and the impact of chronic illness on adolescent and family development.11 Major developmental milestones typically achieved during adolescence are often underdeveloped in children with a chronic illness.12–14 Given the difficulties in adolescent transition in chronic disease, gaps in care clearly persist for this high-risk adolescent population. Transition-related intervention efforts have largely failed to address this multifaceted process for chronic disease adolescents.15,16 Less than half of CHD patients successfully transition to adult care. Less than 30% of adults with CHD are seen by appropriate specialized congenital heart physician providers.17 Of particular concern is that transition outcomes are suboptimal among ethnic minorities,2,18 where timing and process of transition to adult care contribute to poor health outcomes.19 Inadequate transition may result in poor medication adherence, increased emergency care use, hospitalizations, and death.20–22 Patient-centered initiatives (where patients are engaged in their own care), when combined with Internet based (e-health) technology, have emerged as innovative approaches to improve health behaviors and disease management.23–25 Patient-centered self-management programs have shown improvements in adults with chronic disease across health status measures and selfefficacy, as compared with usual care.25,26 To engage CHD adolescents in patient-centered initiatives, information is needed regarding their interests and concerns surrounding transitioning medical care. While a few studies have examined adolescent thoughts surrounding transition for the CHD population, no studies have looked at perceived needs, interests, and concerns of adolescents pretransition and compared them with and adults identified needs post-transition for the CHD population. Even fewer studies have examined percep2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

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tions of transition in a racial/ethnically as well as socioeconomically diverse CHD patient population. The purpose of this study was to explore the perceived transition needs of adolescents (pretransition) and transition experiences of adults (posttransition) with moderate or severe CHD, in a large urban tertiary care center, with a diverse group of individuals from various socioeconomic backgrounds. By interviewing both populations, the goal is to define needs and delivery method for an adolescent transition curriculum. Methods

Study Design Institutional Review Board approval was obtained prior to the initiation of this cross-sectional study. A chart review from the Texas Children’s Hospital (TCH) patient database was conducted to identify adolescents and adults with moderate to complex CHD. Severity of CHD classification, being either moderate or great complexity, was based on definition from the Bethesda Conference on Care of the Adult with Congenital Heart Disease.4 Eligible patients consisted of adolescents between 16 and 20 years of age at the time of study and adults 21–40 with moderate or complex CHD. Patients with global developmental delay and known chromosomal abnormalities were excluded. Letters explaining the study were mailed to randomly selected potential adolescent and adult participants. Three weeks after letters were mailed, each targeted patient was telephoned to assess willingness to participate in the study. Informed consent was obtained from all participants (adult participants: verbal consent; adolescent participants: verbal assent of adolescent and verbal consent of the parent/guardian). Interviews Three members of our research staff conducted semistructured telephone interviews with each patient. Scripted interview questions consisted of both open- and close-ended questions, including prompts to allow respondents to ask questions and discuss issues of personal relevance. Tables 1 and 2 present the interview questions and prompts asked of adolescents and adult participants. Adolescent participants were queried concerning issues of importance to them in preparing to transition to adult-based care, along with the types and methods of delivery of information that might be useful to aid in this process. They were also

Transition Needs in Congenital Heart Disease Table 1.

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Interview Questions for Adolescents*

1. How much do you feel you understand your CHD? Do you wish you had more/less/or about the same amount of information about your CHD diagnosis? Probe to understand their reasons for how much they understand and wanting more/less/about same amount of information. 2. What concerns, if any, do you have about being an adult with CHD? Prompts: working, school, exercise, pregnancy, having a medical emergency while at college or at work 3. What type of information surrounding your CHD, if any, would you like to receive/learn about? Prompts: exercise, pregnancy, insurance, CHD knowledge, oral health 4. What is your preferred method of receiving information? Prompts: paper, face-to-face, Internet, or mobile phone. 5. Do you ever access the Internet? If so, do you mostly do so on your cell phone or on a computer? How often do you access the Internet to health obtain information (i.e., other than play games)? CHD information? Do you text or like to receive information via text? If so, how often do you text? 6. What would be the most helpful way for you to learn about becoming an adult with CHD? Prompts: checklist of what to do, information from your doctor, information from the Internet, information from your mobile phone. 7. On a scale of 1–5 (1 = not helpful, 5 = very helpful), how helpful would it be to talk with adults who have a CHD similar to yours? Probe to identify their reasons for choosing a specific rating. 8. If you feel it would be helpful to speak with an adult with a CHD similar to yours, what would that adult be like? Prompts: matched to specific CHD type, gender, race/ethnicity, age 9. How do you feel about interacting with other adolescents with congenital heart disease? If you could interact with other CHD teens, do you have a preference on who that would be (i.e., having a specific vs. any CHD)? How do you feel about using social media (Facebook, tweets, etc.) to interact with other adolescents with congenital heart disease? Probe to identify if that forum is public, private, or just right. *Probes and prompts were used to clarify, understand, and expand responses to the main questions below. In addition, specific probes are identified in italics.

Table 2.

Interview Questions for Adults*

1. Did you wish you had more/less/or about the same amount of information about your CHD diagnosis when you were an adolescent? Probe to understand their reasons for wanting more/less/about same amount of information. 2. What type of information, if any, would you have liked to receive? Prompts: information about exercise, pregnancy, insurance, oral health, CHD knowledge 3. What do you wish you had learned about being an adult living with CHD that you did not learn as an adolescent? Probe to clarify and understand their responses. 4. Would a checklist that details specific steps to take to become an adult with CHD would have been helpful? Probe to understand their response. 5. If you were to design a checklist about what an adolescent living with CHD should do in order to become a successful CHD adult, what do you think this checklist should include? Prompts: exercise, pregnancy, insurance. Probe to understand why they think these would be important to include in a checklist. 6. Would a mobile electronic medical record be helpful in helping people transition to adult CHD care? Probe to understand the ways in which it would have been helpful. 7. If you have had experience with learning about your CHD on the Internet or a mobile device, how did you enjoy this compared with learning about your CHD from your doctor? Probe to understand which was more helpful and ways in which each were helpful. *Probes and prompts were used to clarify, understand, and expand responses to the main questions below. In addition, specific probes are identified in italics.

asked about e-health modality preferences such as Internet-based learning, interactions with other CHD survivors via social media, and the use of a Web-based transition checklist (to provide a guide of tasks/transition activities to complete during the transition process). In addition, the interviews explored health information preferences and thoughts regarding support that can be offered through an Internet-based mentoring program. A total of nine questions along with follow-up up prompts were asked. The interview lasted between 20 and 30 minutes. Adult participants were asked about the information that they had received about CHD as an adolescent. They were also asked to reflect upon their experience of growing up with CHD, consider if the information they received as adolescents was sufficient, and what additional infor-

mation and/or support they wished they had received. A total of seven questions along with follow-up prompts were asked. The interview duration was between 20 and 30 minutes.

Data Analysis All interviews were audio taped, transcribed, coded, and analyzed by an expert qualitative analyst. Analysis of open-ended questions included data management (e.g., identifying initial categories, developing a data-coding system, allocating data to the categories though coding), descriptive accounts (e.g., summarizing the range and diversity of coded data), and explanatory accounts (e.g., identifying key categories, interpreting concepts). An initial data coding system based on the topics addressed through the interview questions was expanded and refined following the identification Congenit Heart Dis. 2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

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of concepts emerging from the interview data. The finalized data coding system was used to code the interview transcripts using NVivo qualitative data analysis software version 9. Descriptive and exploratory accounts focused on identifying central concepts to describe and interpret adolescents and adults views. Close-ended questions were summarized using frequency counts and associated percentages. Results

Participants For adolescents, 81 letters were mailed, and 46 potential participants were reached by telephone. Of those, 13 adolescents indicated interest in the interview but had difficulties finding time to participate; six refused to participate, and seven were found to be ineligible. A total of 20 adolescents with moderate to severe CHD participated in the study, and all 20 interviews were transcribed. For adults, 78 letters were mailed, with 39 potential adult participants reached by telephone: six were interested but had difficulties finding time to participate; six refused to participate, and six were found to be ineligible. A total of 21 adults with moderate to severe CHD participated in the study. Post–telephone interview, one adult was excluded, as the recorded audiotape was unintelligible, thus was unable to be transcribed, leaving 20 adult interviews that were transcribed. Twenty-five percent of adolescent participants and 40% of adult participant were from minority communities (black or Hispanic), and 27.5% of all participants were utilizing public (governmental) insurance. Other patient demographics for the participants as well as disease severity are detailed in Table 3. Adolescents Medical Knowledge and Concerns The majority of adolescent respondents (n = 14; 70%) reported having a good understanding of their condition including knowledge of the type of heart defect and treatment that they had received. Of those that said they had a good understanding, nearly half (n = 6) indicated that they currently have enough information for managing their condition including a good understanding of medications and exercise restrictions. However, when adolescents were asked if they would have liked to receive more information regarding their CHD, opinions were equally split between who wish they 2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

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Demographic Data for Study Participants

Demographics Participants’ age (years) Mean (range) Gender Male Female Race/ethnicity White, non-Hispanic Black, non-Hispanic Hispanic Insurance status Private Public Self-pay/charity Disease complexity Moderate Great

Adolescents (n = 20)

Adults (n = 20)

17.5 (16–20)

31 (21–40)

11 (55%) 9 (45%)

11 (55%) 9 (45%)

15 (75%) 1 (5%) 4 (20%)

12 (60%) 1 (5%) 7 (35%)

17 (85%) 3 (15%) 0 (0%)

11 (55%) 8 (40%) 1 (5%)

7 (35%) 13 (65%)

11 (55%) 9 (45%)

Table 4. Transition Educational Needs as Perceived by Adolescents with CHD • CHD causes and prevalence • Effects and coping strategies • Limitations and restrictions (e.g., what to avoid, type/amount of exercise) • Exercise and nutrition • Pregnancy and child birth • Treatment history and anticipated future procedures • Heart anatomy • Health insurance • Concerning signs and symptoms for CHD patients • School and career options • Long-term options for managing CHD, including prevention

had received more information (n = 10; 50%) and those who were satisfied with the amount of information received (n = 10; 50%). Opinions were also split evenly between those who indicated having concerns about becoming an adult with CHD (n = 10; 50%) and those who did not (n = 10; 50%). Similarly, adolescents’ opinions were also split evenly between those who indicated having concerns about managing their condition into adulthood and those who did not. Concerns expressed by adolescents (from most frequent to least frequent) included: understanding life expectancy, considering the impact of CHD on work and career options, learning about health insurance, going to medical checkups and visits on their own, dealing with medical emergencies, and explaining their condition to new doctors when transitioning from pediatric to adult care. Female adolescents expressed some concern about understanding the impact of CHD on pregnancy and childbirth. The full list of identified learning needs of adolescents with regard to their condition is included in Table 4. Notable quotes included:

Transition Needs in Congenital Heart Disease Adolescent female: I am definitely nervous about transferring to an adult doctor. I’m very nervous about that and explaining to my new doctor about my heart condition. I think it is going to be nerve wracking to go without my mom for the first time . . . Adolescent female: I think the biggest thing that I’ve always worried about is giving birth. When I get older, [is having a family] gonna be a problem? Am I gonna die?

Preferred Methods of Receiving CHD Information When asked about their preferred method of receiving information, the large majority of respondents (n = 17; 85%) indicated that they prefer to receive information as part of a direct conversation with their doctor. Additional suggestions for receiving CHD information by adolescents are listed in Table 5. Many of those methods centered around Internet use. All respondents indicated that they access the Internet using either a cell phone (n = 16; 80 %) and/or a computer (n = 10; 50%); most respondents indicated that they increasingly use their cell phone to go online. When asked about searching health information, more than half (n = 11; 55%) reported that they rarely search health information related to their heart or CHD condition, and rather search for general things like symptoms and common sickness (e.g., cold, migraine). All respondents indicated that they use their phone and text very frequently (e.g., several times a day). When asked about receiving CHD information by text, more than half of the respondents (n = 11; 55%) indicated that they would find it to be acceptable. Mentorship The majority of respondents (n = 12; 60%) indicated that talking to an adult with CHD to help understand adult life with CHD would be helpful or very helpful. They explained that talking to Table 5. Preferred Methods for Adolescents to Receive CHD Information Internet Based Informational Websites (n = 11; 55%)

Non-Internet Based

Receiving patient education materials/brochures (hard copies) (n = 4; 20%) Receiving e-mails Receiving information through CHD (n = 4; 20%) mentors (n = 12; 60%) Watching online Receiving information through their videos/presentations (e.g., doctor (n = 17; 85%) podcasts) (n = 2; 20%) Checklists (n = 11; 55%)

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people who have been dealing with the same issues for a longer time was a great opportunity to learn about problems and coping strategies and to receive support. While several adolescents indicated that they preferred to speak to a mentor with their same CHD condition, other mentor characteristics such as age, gender, and ethnicity were considered to be generally less important. Notable quotes regarding CHD mentors included: Adolescent male: I haven’t been dealing with it [CHD] as long and they [mentors] have been dealing with it longer . . . maybe talking to them could give me a different or a better perspective on certain things like how to take care of myself. Adolescent female: Because I think that if I could relate to somebody who had it [CHD] . . . I feel like they can understand the same things that I go through and maybe help me understand everything . . . brief me on things that maybe could be possible along the lines for me and we could really relate, and maybe medications they are taking and they could better help me understand my condition.

Social Media The majority of respondents (n = 18; 90%) indicated that they would also be interested in interacting with other adolescents with CHD. Several respondents (n = 8; 42%) indicated that they would prefer face-to-face meetings with adolescents because they were concerned about discussing personal issues related to their condition on publically accessible social media groups. Participants listed Facebook and Twitter as their preferred and most commonly used Internet applications provided it was in a private passwordprotected group. Internet opinions were split with regard to the characteristics of those with whom they would prefer to interact: Half (n = 10; 50%) indicated that they would prefer being in contact with people with same general characteristics (type of heart condition, gender, and age), and others (n = 8; 42%) expressed no preference or were interested in a more general group (e.g., not specific to one CHD condition). Two individuals did not have interest in interacting with other adolescents via the Internet. Checklist We asked the adolescents if they felt that having a specific list of things to do for transition would be a helpful way to learn about becoming an adult with CHD. Out of 18 adolescents who were asked Congenit Heart Dis. 2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

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if an Internet-based checklist would be a helpful, the majority (n = 11, 55%) expressed agreement.

can’t do without resulting in causing more problems to my situation.

Adults Medical Knowledge Interview findings indicate that there are differences among adults with CHD with regard to the amount of information that they received as adolescents. Roughly half indicated that they wished they had received more information (n = 9; 45%), with the other half indicating they were satisfied with the amount of information they had received (n = 11; 55%). For those who indicated that they had not received adequate information, the following were perceived reasons: lack of awareness about the severity and long-term implications of their condition, being reluctant to know more about their condition, and/or not being ready to process some of the information because of their age. Several respondents indicated that as adolescents they wished they had received more information about (1) their own CHD conditions in terms of type of heart defect, treatment received, severity of condition, and causes (n = 5, 25%), and (2) the long-term health care issues associated with their conditions, such as future surgeries, and long-term complications including the side effects of medications (n = 10; 50%).

The impact of CHD on health insurance as well as future career and work planning was highlighted by some respondents as important areas of transition information for adolescents and young adults. Regarding health insurance, some respondents (n = 5; 25%) stressed that although recent changes in health insurance policies have widened the opportunity for people with preexisting conditions, to find appropriate coverage, advice, and guidance on health insurance was still very important for people transitioning to their own health insurance plans for the first time. Respondents recalled feeling unprepared in adolescence for understanding the long-term impact of CHD (such as the need for future surgeries), career options given their CHD, and the risk of early unemployment. Notable quotes included Adult male: I had insurance up till I was 18, because of my situation but I guess I would have liked to have known if I should have been on disability a lot sooner than I got it, because I didn’t get considered for disability until I was like 29/30 years old. Adult female: Not knowing outcomes, possible future surgeries, and stuff like that. It was always kind of talked about maybe more in the abstract instead of the definitive, but then the time comes to get your valve replaced, maybe every 10 years, how it will affect your career, and stuff like that. I wish I would have been more prepared for that.

Information Received and Not Received as Adolescents When asked to consider specific topic areas helpful to learn in adolescence, nearly half (n = 8; 40%) of the respondents indicated that it would have been useful to receive more specific and individualized information about exercise, nutrition, and lifestyle. For some participants, information received from physicians about the risks associated with exercising and about the importance of exercise to keep the heart healthy resulted in unclear or conflicting messages. Notable adult quotes included

Some respondents stressed the importance of advising adolescents on how to communicate with school counselors and teachers about the special needs that might arise from their condition during school and higher education.

Adult male: I have exercises I’m not supposed to do, but at the same time I’m told to exercise to keep the heart good. It’s good to learn in transition, figuring out what each individual is supposed to be doing. Adult female: I wish I would have had a better understanding specifically of what I could and could not do, as far as working out, playing sports and stuff like that. Because I was always told you can’t do anything . . . a little bit more information about what I physically can and

Self-Advocacy, Pregnancy, and Dental and Mental Health Advice and information on making appointments, managing medications, and talking to health care providers were also considered important for appropriate adolescent transition. Information including type of cardiologist (e.g., adult vs. pediatric) to see when transitioning to adult care and about the side effects of medications was noted as particularly important. In addition, respondents indicated the importance of providing information

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Transition Needs in Congenital Heart Disease about birth control, the impact of risks associated with pregnancy, and women’s issues such as pregnancy and childbirth. Notable quotes included Adult female: One thing that is very important for different types of heart conditions is birth control. I know some people, like with my type, shouldn’t take birth control and it can adversely affect pregnancies [. . .] I’ve seen maybe about 3 different cardiologists since birth and I’ve had about 3 different opinions on pregnancy. Some respondents indicated that information about mental health would also be important to help people manage stress. Adult female: I think it would be beneficial when you’re transitioning and trying to learn how to cope and all of that and then differences between actual chest pain and anxiety. I know I don’t but other heart patients do. You know you can’t really tell the difference between the two. Finally, when asked about dental health, the large majority of respondents indicated that they had received sufficient information.

Preferred Methods of Receiving CHD Information The majority of respondents indicated that talking to a doctor is the preferred way to receive information relevant to their CHD conditions and that it should be explained to them in a way that it is easy to understand. However, searching for information online was seen as a complementary way to receive information and also helped in preparing for their conversation with a doctor. They also noted that Internet searches provided visual information in the form of pictures and videos complemented the verbal explanations offered by physicians. Of those who indicated that they had experience searching for information online (n = 13; 65%), they explained that they watched videos on the American Heart Association Website, searched different Websites as a results of generic Google searches, visited the Adult Congenital Heart Association Website, watched heart surgery on YouTube, and read blogs. Respondents also indicated that information that is available online might be overwhelming or not relevant to their specific condition. Checklist When asked about the development of a checklist to help adolescents’ transition to adult care, most

Table 6. Topics to Include on a CHD Checklist for Transitioning Adolescents • Advice on health healthy diet, exercise, and oral health • Information on health insurance coverage, including understanding how different options impact on care • Help with scheduling appointments • Help with understanding different tests • Explanation about CHD diagnosis including what to expect (e.g., future surgeries) and what happens to your heart as you are growing • Advice on managing stress and anxiety • Information about type of cardiologists that can treat congenital defects • Information about women health • Reminders about follow-up visits • Information on what to expect at different stages on life from adolescence to adulthood and to prepare for it • Information about medications • Personalized information depending on type of CHD • Information about the long-term impact of CHD on future life

adolescents (n = 12; 61%) and adults (n = 16; 80%) saw benefit in an Internet-based transition checklist to guide the transition process. Respondents suggested that a checklist would be useful in: (1) supporting transition as parents become less involved in care; (2) managing emergency situations with doctors who are not familiar with the diagnosis; (3) increasing awareness of importance of follow-up care for parents and children; (4) selfmonitoring; (5) setting expectations for the future to be able to plan around them; and (6) learning about the importance of lifestyle choices (e.g., smoking, diet). Suggestions about specific topic areas to be included in the checklist are listed in Table 6. Discussion

This study demonstrates there are both similarities and differences in the perceived transition needs of adolescents vs. adults with CHD. Adolescents seek more information about managing medical emergencies and explaining their condition to new doctors when transitioning care. Adults, on the other hand, wished they had known more about the long-term health care issues associated with their form of CHD (e.g., future surgeries and long-term complications including the side effects of medications). Additionally, adolescents felt that learning from the experience of adults with CHD as well as each other can be useful in identifying informational needs and having emotional support that could help them when transitioning to adult care. With regard to similarities, both cohorts agreed that a checklist of “things to do” to facilitate Congenit Heart Dis. 2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

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transition in care would be helpful. Both younger and older females saw the importance of additional information surrounding family planning and pregnancy. Participants in both groups agreed that although speaking with their physician was the preferred way of learning about their CHD and its impact, the Internet was seen as a complementary way to receive information. While most adolescents were not actively seeking medical information online, adults noted that independently seeking information online may be problematic as an adolescent, as it might be overwhelming. In the US, lapses in care of patients with CHD were reported in at least 63% of adults, which is likely underestimated given the population of individuals who never return to care.27 While lack of insurability is an important barrier to receiving ongoing care, studies have shown that patients additionally do not seek care because of lack of knowledge regarding their condition and the importance of follow-up care.28 Thus, the importance of having individuals understand their conditions, long-term implications of CHD, as well as the importance of long-term follow-up is crucial. While experts agree that transition care is necessary for adolescents with CHD, approaches as to how to provide this care remain varied. One study noted that the most crucial step identified for successful transition was the assessment of adolescent maturity and readiness for discussion and implementation of transfer.29 This requires that providers conduct these assessments and have transitionrelated conversations with their patients, and/or use additional modalities to assess and prepare for adolescent transition and transfer of care. There is a lack of evidence from existing transition programs on the most effective way to transition adolescents with CHD from pediatric cardiac care into adult cardiac care.30 This is particularly true as there are ∼35 different types of CHD, and patients have varied needs in terms of follow-up timing, knowledge, and longterm implications of their CHD. Our study suggests that while patients prefer to learn about their CHD condition directly from their physicians, they were also receptive to other modalities to obtain information important to the success of adolescent transition including informational Websites, e-mails, text messages, videos, and presentations. Despite the movement toward patient-centered approaches, most disease management follows a dated model of decision making: a patient receives instructions rather than participate in the manage2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

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ment process and/or be appropriately prepared for this process.31,32 There is evidence that teens have an interest in Internet and mobile-based programs for chronic disease management.14,33,34 Many adolescents have ready access to mobile technology; one in four teens are “cell-mostly” Internet users, 78% of teens have a cell phone, and nearly half (47%) of those own smartphones.35 Similar interest from minority adolescents with chronic diseases36 has been observed. Mobile phone access is particularly high for minorities. Sixty-six percent of Latinos and 72% of African Americans either have a broadband connection or a smartphone.37,38 This is particularly important, as minority adolescents encounter greater transition barriers than their nonminority peers.39 Given the familiarity of adolescents with Web-based interfaces, these modalities to assist in transition should be developed for this group who primarily utilizes their cellular phones to access Web-based information. One study demonstrated that mobile technology-based transition interventions have been shown to improve disease management, health-related self-efficacy, and patient-initiated communications in inflammatory bowel disease, cystic fibrosis, and type one diabetics.40 This study is among the first to evaluate potential mobile and Web-based approaches for various transition needs and concerns across a spectrum of CHD diseases for a diverse patient population. In this study, all adolescents possessed a mobile phone, and many were open to mobile-based delivery of CHD information. There are few other studies examining the retrospective thoughts of adults with CHD on who have transitioned from pediatric to adult care settings. One study examined the life experience of adolescents and young adults (ages 15–24 years) and noted that patients had imperfect CHD understanding, increasing anxiety, and unmet needs.41 This study explored perceived needs by adolescents as well as the needs experienced by adults who had already experienced and completed the transition process. These two points of view help us to understand the spectrum of topics and emphasis on specific topics that are needed for transitioning adolescents with CHD. We also assessed additional modalities and acceptability of those modalities in a socioeconomically diverse, multi-racial/ethnic population of adolescents with moderate or severe CHD. The majority of studies that exist for transition in adolescent care are limited to international studies, less diverse US populations, or non-CHD populations, making

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Transition Needs in Congenital Heart Disease applicability of these approaches unclear for all adolescents with CHD.42–44 Studies have shown that an educational intervention should be routine for youth with CHD who will be transitioning to adult care.44 Delivery of and type of intervention remain less clear. Emotional support is clearly important for this delicate period. Our study suggests that adolescents with moderate or complex CHD may be open to interacting with adult CHD mentors, Web-based learning, particularly via their mobile phones, and interactions with other adolescent individuals with CHD in a nonpublically available social media platform. Further, the majority of adolescents in our study noted that they would be open to using a checklist to aid in their transition. This, if coupled with a patient centered tool for transitioning care, may greatly facilitate in closing gaps in CHD knowledge and improving adolescent CHD transition.

Limitations There were some limitations to our study. Although randomly chosen, our patients participated in a qualitative study from a single tertiary care center, and there was a relatively small sample size, and thus, the ability to generalize across all adolescents and adults with CHD may be limited. However, the program at TCH represents one of the largest and most diverse cohorts of adolescent and adult CHD patients in the nation covering a broad spectrum of moderate and complex CHD. Furthermore, the TCH program draws patients locally, regionally, and nationally, and follows a population of patients that is diverse racially, ethnically, and socioeconomically. Finally, we did obtain thematic saturation with interviews, with answers were being repeated among the participants providing evidence that we had likely captured the major themes applicable to CHD patients. Our results, however, may be generalizable only to adolescents with CHD who are currently receiving specialized CHD care. We do not know about the needs of patients who are currently no longer receiving specialized care or those in nonurban, nontertiary care center settings. Conclusion

This study demonstrated that there are both similarities and differences in the perceived transition needs of adolescents and the experiential insight of adults with CHD. This information can be used

to build a curriculum to prepare patients for improved transition from pediatric to adult CHD care. Adolescents note several transition topics important to them, including understanding what are medical emergencies, the long-term impact of CHD on pregnancy, and future career options. Adults with CHD noted important topics for transition included career/educational guidance, long-term CHD planning, insurance, and mental health. Knowing what to do to prepare for transition is also important and may be facilitated by the use of a checklist of things to do for the transitioning group. Adolescents with CHD are receptive to receiving CHD information from providers, via Internet-based modalities and via adult CHD mentors. Finally, social media-type interaction is important to adolescents, by learning about becoming an adult CHD from other adults with CHD who have been through the experience, as well as being able to interact with each other in a social media format that is limited to CHD patients. Future studies should focus on developing programs that include Internet-based components, including determining what type or style of “checklist” would be most effective for these transitioning adolescents. Individual assessments of readiness to transition may facilitate tailoring of educational and skill-building approaches to meet the specific needs of the CHD patients. Additionally, future studies should investigate the best ways to include mentorship and social media in a formal adolescent CHD transition program.

Authors’ Contributions All authors meet criteria for inclusion, namely: (1) substantial contributions to research design, or the acquisition, analysis, or interpretation of data; (2) drafting the article or revising it critically; and (3) approval of the submitted and final versions. Keila Lopez, MD, MPH: Concept/design, data analysis/ interpretation, drafting article, critical revision of article, approval of article. Melissa Karlsten, MPH: Data collection, drafting article, critical revision of article, approval of article. Francesca Bonaduce De Nigris, PhD: Data analysis/ interpretation, critical revision of article, approval of article, statistics. Jason King, PhD: Data analysis/interpretation, critical revision of article, approval of article, statistics. Katherine Salciccioli, MD: Data collection, critical revision of article, approval of article.

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570 10 Alice Jiang: Data collection, approval of article. Ariane Marelli, MD: Concept/design, critical revision of article, approval of article. Adrienne Kovacs, PhD: Critical revision of article, approval of article. Michael Fordis, MD: Concept/design, critical revision of article, approval of article. Deborah Thompson, PhD: Concept/design, data analysis/ interpretation, drafting article, critical revision of article, approval of article.

Corresponding Author: Keila N. Lopez, MD, MPH, 6621 Fannin Street, MC 19345, Houston, TX 77030, USA. Tel: 832-826-5915; Fax: 832-825-0165; E-mail: [email protected] Conflict of interest: None. Accepted in final form: May 24, 2015.

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Congenit Heart Dis. 2015;10:561–571 Congenit Heart Dis. 2015;••:••–••

Understanding Age-based Transition Needs: Perspectives from Adolescents and Adults with Congenital Heart Disease.

The purpose of this study was to explore the transition process in congenital heart disease (CHD) care through the perceived needs and concerns of ado...
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