Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 7 (2014) 17–31 DOI 10.3233/PRM-140276 IOS Press

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Opportunities lost and found: Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare Rachel L. DiFazioa,∗, Marie Harrisa , Judith A. Vesseya,b, Laurie Gladera,c and Susan Shanskea a

Boston Children’s Hospital, Boston, MA, USA Boston College, Chestnut Hill, MA, USA c Harvard Medical School, Boston, MA, USA b

Accepted 28 September 2013

Abstract. PURPOSE: To describe and define the experiences of adults with cerebral palsy (CP) and parents of adults with CP who have been involved in a transfer of physiatry care from pediatric to adult healthcare and to explore their experiences more generally in the transition from pediatric to adult services. METHODS: A qualitative research approach was used. Semi-structured focus group interviews were conducted with adults with CP (n = 5) and parents of adults with CP (n = 8) to explore the health care transition (HCT) process from pediatric to adult healthcare. Four key content domains were used to facilitate the focus groups; 1) Transition Planning, 2) Accessibility of Services, 3) Experience with Adult Providers, and 4) Recommendations for Improving the Transition Process. Conventional content analysis was used to analyze the data. RESULTS: Four themes emerged from the focus groups; Lost in Transition, Roadmap to Care, List of None, and One Stop Shopping. Participants felt lost in the HCT process, requested a transparent transition plan, expressed concern regarding access to adult healthcare, and made recommendations for improvements. CONCLUSION: Challenges in transitioning from pediatric to adult health care were identified by all participants and several strategies were recommended for improvement. Keywords: Cerebral palsy, health care transition, physiatry

1. Introduction Improvements in clinical care resulting in increasing longevity for individuals with many pediatric chronic conditions have created new challenges in providing quality healthcare to these populations when they reach ∗ Corresponding author: Rachel L. DiFazio, Orthopedics Center, Boston Children’s Hospital. 300 Longwood Ave, Boston, MA 02114, USA. Tel.: +1 617 240 8287; Fax: +1 617 730 0092; E-mail: [email protected].

adulthood. Cerebral palsy (CP) is one such condition, with an estimated prevalence of 1.5 to more than 4 per 1,000 live births making it the leading cause of childhood chronic physical disability [1–5]. Because it is estimated that the majority of children with CP will now reach adulthood, the need to provide comprehensive health care transition (HCT) planning is imperative if their general well-being and health related quality of life is to be maximized and maintained. HCT has been defined as the “purposeful, planned movement of adolescents with chronic medical conditions from child-centered to adult-oriented health care” [6].

c 2014 – IOS Press and the authors. All rights reserved 1874-5393/14/$27.50 

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R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare

HCT is generally thought of as a developmental process which culminates in the transfer of care to adult providers [7,8]. A key element in creating new HCT models is gaining the perspective not only of providers creating models of care, but also the patients and parents experiencing the transition and transfer process. The Institute of Medicine (IOM) in its landmark report, Crossing the Quality Chasm: A New Health Care System for the 21st Century (2001) named patient-centered care as one of the six dimensions of health care quality. The IOM defined patient-centered care as “care that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions” [9]. Yet a significant gap exists between what patients want and what they get in terms of shared participation and patient centeredness. This gap is identified in the transition literature where the majority of studies have focused on provider perspectives, institutional constraints, or policy development [10–13]. This concern has been explicated in a recent systematic review of HCT from the perspective of adolescents and emerging adults with special health care needs. Betz (2013) provided an overview of the experiences presented in the literature to date from this crucial perspective. Her review synthesized the findings of 35 descriptive studies and identified five major themes. These included: 1) reflections of experiences with HCT services received, 2) recommendations for the development of HCT services, 3) obstacles identified with the transition process to adult health care, 4) expectations related to the eventual transfer to adult care, and 5) issues pertaining to becoming self-reliant with self-management of their special health care needs. These results highlight the importance of listening to patients voices and incorporating their recommendations into the development of HCT programs. Betz concluded that additional research, including studies that are condition-specific, need to be conducted to capture the unique perspectives of those affected individuals: such as CP [14]. CP is a group of non-progressive permanent disorders of motor development with considerable variation in the severity of physical impairment and is accompanied by a broad range of co-existing cognitive, sensory, communication, and medical conditions; the development of complications and sequelae are common [15]. All of these health issues must be addressed in the transition process. In CP, an additional barrier to HCT is that one of the primary types of specialty providers

also changes. The intense orthopedic care required by children with CP is often not needed when they reach adulthood and physiatry care assumes more prominence in treating associated musculoskeletal problems. Because of the complexity of CP, one of the fundamental barriers to HCT is the lack of qualified adult healthcare providers and transition care coordinators who can address these individuals’ healthcare needs [16–18]. It is thus critical that systems of care are created based on patient and parent recommendations. The continuation of necessary services needed to meet the complex health care needs of individuals with CP as they transition from pediatric to adult health care can then be upheld. Although numerous articles have been written to describe pilot or model HCT programs, to date many of these programs have not undergone formal evaluation. An integrative review was conducted to identify models of transitional care from pediatric to adult health services for individuals with CP and other disorders. Of the 19 papers reviewed only four papers described models of care for individuals with CP; none of which included a program evaluation. The results of this review indicate that there is a lack of evidence to inform best practices related to transitional care [19]. With no true objective data to guide the transfer/ HCT process, Camfield and Camfield (2011) provided guidelines to improve the HCT process based on clinical experience and literature review. They strongly supported the need for a joint pediatric/adult transition clinic [20]. Other authors, advocate for a multidisciplinary clinic for adults with CP which is structured similarly to CP clinics in the pediatric setting [21]. Betz and Redclay (2003) describe a nurse practitioner led transition clinic for individuals with special health care needs. This model of care was designed to meet the individual’s needs for transition services by obtaining resources available in the community [22]. Additionally, the concept of medical home so prevalent in pediatric care is just emerging in the adult health care model [23,24], but has not been fully operationalized. Continued work needs to be done to gain the patient/parent perspective regarding HCT in order to develop HCT programs for young adults with complex health care needs. In order to address this issue, this study was designed to have adults with CP and parents of adults with CP describe their specific experiences in transferring their physiatry care from a pediatric to an adult model of care delivery. Descriptions of more general experiences with the process of HCT were also elicited. Of specific interest was capturing participants’

R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare

perspectives on the HCT experience, benefits identified, barriers encountered, and strategies for improvement.

2. Methods 2.1. Design A qualitative descriptive study design using a focus group strategy was employed. This methodology acknowledges informants as experts when exploring complex, multi-faceted topics. Thus, a comprehensive description of transferring physiatry care from a pediatric to adult setting as well as a more general description of the HCT experience could be generated. 2.2. Sample and setting This study was conducted at a large pediatric teaching hospital in the Northeast. Prior to initiation, approval from the Institutional Review Board was obtained. Purposive sampling was used in order to select participants for two focus groups, one of adult patients with CP and one of parents of adult patients with CP. These participants were selected because they could provide in-depth information about the phenomenon of interest. Two groups were formed according to predefined characteristics and theories of group dynamics. All participants were homogeneous on the central, predetermined control characteristic of transferring physiatry care from a pediatric to an adult setting. Break characteristics (what differentiates participants from each other) are known to reduce threats to data validity including face-politeness and needs for social desirability [25]. Group composition was thus determined by the single break characteristic of patient or parent perspective. Study participants were recruited from a list of all of the patients in the Cerebral Palsy Program who had been referred by the program for physiatry care at an adult healthcare facility and who had completed at least one visit with an adult provider (N = 83). The average age of patients in the pool who were referred was 25 years (range: 18–43 years). This wide age range was due to the fact that appropriate transition services and planning were just becoming operational in the region. Inclusion criteria for patients and parents required that they spoke English, were capable of independently providing informed consent, and were interested and available to participate in the focus groups. Additional

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inclusion criteria for patients required that they had the necessary communicative and cognitive abilities to actively participate in the focus groups. Parents of adult children with CP needed to meet the same inclusion criteria; their adult child had transferred their physiatry care to an adult health care provider and had completed at least one visit. Intra-family patient-parent dyads were not required because cognitive or expressive language delays are common in individuals with CP and this would have eliminated a large sector of parents whose children had completed the transition process. In addition, many adults with CP are able to live independently of their parents and this would have eliminated participants whose parents may not have been available or involved in the HCT process. A recruitment letter was sent to the home of each adult patient living independently or, if living at home, to their parents, explaining the study’s purpose and requesting both the patient’s and parents’ participation in the study. Two weeks after the letter was sent, all potential participants were contacted via telephone and a formal script was used for screening purposes. Twentyfive eligible patients and parents expressed interest in participating; the others could not be contacted, were unwilling to participate, or did not meet the inclusion criteria. The dates and times of the focus groups were then arranged to meet the majority of eligible participants’ schedules. Two focus groups were conducted, one of patients (n = 5) and one of parents (n = 8). Of the 13 participants, there were 3 parent/child dyads. Table 1 provides the demographic characteristics of the study population. Participant remuneration included lunch and $75 per person for their time and travel. 2.3. Data collection/procedures Prior to conducting the focus groups, separate but parallel moderator guides were developed for the patients and parents to be used in facilitating group discussion as needed. The guides were specifically created to support the study’s purpose using an evidencebased practice approach. Initially, information on HCT was culled from the published multidisciplinary research findings and informed by healthcare transition theory, expert clinical opinion and patient experiences shared with the healthcare team [26]. The primary question that guided the study was “How would you define a successful transition process?” Four key content domains for the moderator guides were identified including: 1) Transition Planning, 2) Accessibility of

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R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare Table 1 Demographic characteristics of the study sample Characteristic Age

Gender Male Female Ethnicity Hispanic or Latino Not Hispanic or Latino Race White Black Education Some high school or less High school diploma/GED Some college, vocational school or Associates degree College or University degree Post graduate degree Employment Status Working full time Working part time Not working due to their own health Retired Looking for work outside of the house Place of Residence (Adult with CP) At home with parents Living independently

Services, 3) Experience with Adult Providers, and 4) Recommendations for Improvements to the Transition Process. Open-ended questions with selected probes were then developed for each of these domains. An iterative process was used to help ensure the clarity of the questions. The open-ended questions for each of the key domains for the patient and parent guides can be found in Table 2. Following participant recruitment, the focus groups were conducted in private hospital meeting rooms, lasted 90 minutes, and were audio-taped. Prior to the start of the focus group, participants gave informed written consent and completed a demographic form. In order to help make the participants become comfortable about sharing their experiences, an informal lunch was served where all individuals had the opportunity to meet. Each focus group had a moderator and a recorder. The moderators were experienced in leading focus groups and knowledgeable about HCT, CP, and family theory, but were not members of the clinical care team and unknown to the participants. These moderator attributes helped ensure that high quality data could be elicited without being influenced by prior relationships with the participants. The two recorders, members of

Adult patient (N = 5) Range = 24–44 M = 32 SD = 8.6 n (%) 2 (40) 3 (60) n (%) 0 (0) 5 (100) n (%) 4 (80) 1 (20) n (%) 0 (0) 0 (0) 3 (60) 2 (40) 0 (0) n (%) 1 (20) 1 (20) 2 (40) 0 (0) 1 (20) n (%) 3 (60) 2 (40)

Parent of adult patient (N = 8) Range = 50–72 year M = 62 SD = 8.5 n (%) 2 (25) 6 (75) n (%) 0 (0) 8 (100) n (%) 7 (87) 1 (13) n (%) 0 (0) 2 (25) 2 (25) 3 (38) 1 (13) n (%) 1 (13) 1 (13) 0 (0) 6 (75) 0 (0) n (%) 6 (75) 2 (25)

the clinical care team but not direct care providers, operated the digital-audio recorders and took field notes, with specific attention given to capturing non-verbal behaviors of participants that supported or negated comments being made by others. At the onset of the focus group, the moderators initially adopted a directive role, leading introductions, reiterating the purpose of the group, reviewing ground rules, and explaining the purpose of the recorders. Using a formal script, participants were told that they did not have to answer any questions with which they were uncomfortable. Following the introductory phase, the moderator adopted a more facilitative role as questions, as well as answers, were generated from the study participants themselves. It was anticipated from the investigators’ experience that the conversation would be free-flowing as the topic of HCT was particularly salient to the participants. Congruent with focus group methodology as described by Krueger (2009), the moderators did not push participants towards conformity or consensus as the aim was to derive a comprehensive picture of the transition experience [25]. The moderators allowed the data to be driven by the participants by encouraging them to speak about what was important to them rather

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Table 2 Abbreviated moderator guide: Domains, key questions and selected probes Domain I: transition planning

Key question: Probes:

Key question: Selected probes:

Domain II: accessibility

Key question: Selected probes:

In your opinion how would you define a successful transition process? – When did providers first discuss transition/transfer of care with you? – At what age should this discussion begin? – What expectations did you have related to the transition process? – How was it different from what happened? – In what way could providers best prepare patients for transfer to adult care? How has the transfer of care process been for you? – How was the transfer of care between health care providers coordinated? – Who was involved in the process? – How did you feel about this process? – What did you like/dislike about the process? What is your experience with the accessibility of services at the adult facility? Describe how hard or easy it was to access services. – Did you face any obstacles in efforts to receive care? – What is your experience with insurance providers? Were providers/services covered? What was/was not? – Were these issues clear to you before the transition? – How was the process for you? Was it difficult or easy? How? Can you give examples? – What did you like/dislike?

Domain III: experience with adult provider

Key question: Selected probes:

How has your experience been with the adult provider? – How has it been different from a pediatric provider and/or has it remained the same? – What expectations did you have related to medical care and/or procedures with an adult provider? – How was it the same or different from what happened? – How involved are you in your care? – Has your involvement been different and/or has it remained the same? – How do you feel about that? – What would you prefer?

Domain IV: Recommendations

Key question:

How can we make the transition program in the Cerebral Palsy Program better for future parents and patients? – What recommendations do you have for providers? – What advice would you give to parents? – What information would have been helpful for you to have before, during, or after the transition process? – When should providers start talking to parents about starting the transition process?

Selected probes:

than leading them with statements or questions that the research team thought were important. Moderators modified, elaborated, and redirected the conversation as necessary to encourage dialogue while adequately addressing the research questions and ensuring that all aspects of HCT were discussed. Moderators only used the questions from the guides as necessary to ensure that comprehensive data were being generated. Data was collected until all people interested in participating in the discussion had an opportunity to voice their thoughts. 2.4. Data analysis Data were analyzed using conventional content analysis [27]. Audio-tapes from the focus groups were transcribed verbatim by a CITI- (Collaborative Insti-

tutional Training Initiative) and HIPAA- (Health Insurance Portability and Accountability Act) certified transcriptionist; accuracy was insured by comparing the audio recording with its written transcript. The transcripts were then entered into Hyper-RESEARCH 3.03, a qualitative software computer program, for systematic analysis. Field notes about the environment, and participant observation, context, and tone were added to facilitate interpretation. Data from the patient and parent focus groups were analyzed separately. Consistent with conventional content analysis, a taxonomic approach was used to develop explanatory themes from the data to provide a condensed, broad description of CP patients’ HCT – the phenomenon under investigation. Because there is a substantive emerging body of literature on HCT, but there is little work specific to HCT challenges identified by patients with CP and their families them-

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selves, a combined inductive/deductive approach was used [28]. First, an inductive approach was employed. No preconceived codes were used in the initial analytic process which was guided by the research purpose. Interpretation of the data employed a deductive approach, comparing and contrasting the emergent themes to transition experiences describing similar, but differing phenomena associated with HCT. Three members of the research team (RD, MH, JV) independently read each of the transcripts in its entirety in order to obtain a general sense of the participants’ HCT experience. They then identified in vivo codes consisting of the significant words, phrases, and statements made by participants and specific to the nature of the HCT experience. Similar codes were clustered together into categories and redundancies were eliminated. Themes were developed that captured the essence of the categories that defined the HCT experience [29]. These themes are abstract representations of the data and provide unified holistic meanings of the HCT experience described by the participants [30]. At each stage of the process, the team discussed discrepancies in coding and conducted further transcript review to reach consensus. Data analysis was completed when no further information emerged from the transcripts.

3. Results The participants clearly indicated that the overall purpose of the focus groups, to better understand the HCT process, barriers to HCT for individuals with CP, and to identify strategies for improvement, was an important and salient topic. Four themes arose from the analysis of the data: 1) Lost in Transition, 2) Roadmap to Care, 3) List of None, and 4) One Stop Shopping. Each of these four themes were generated from identified categories, which were based on the initial in vivo codes. Table 3 describes the codes, categories, and themes. 3.1. Theme 1: Lost in transition Frequently repeated words related to emotions regarding the HCT process were coded and from them emerged two categories: emotional aspects of transition and no bridge to care from one to another. These codes and categories led to the development of the first theme, Lost in Transition. The emotional upheaval associated with the HCT was universal to all participants

and pervasive throughout the discussions. Trust between patients, their proxies, and providers is foundational to high quality care. Although participants were cognizant that at some point transfer of care from the pediatric to adult health care would occur, all felt unprepared and did not feel that they were active participants in the timing of the decision. Parents expressed feeling abandoned and hurt, having been “kicked out” of their trusted relationship with their child’s pediatric provider; patients echoed this concern. One patient discussed the loss of a longstanding emotional connection between herself and the pediatric provider regarding her experience transferring care: I think there’s also an emotional part that needs to be acknowledged. . . if you’re seeing somebody every six months or every year until you’re like seventeen, eighteen, there’s some kind of connection there. So then they’d be like okay go away now. It’s kind of like wait, what are you doing with me? Concluding a long-standing relationship with their physician, when perceived as a deep violation of a trusting relationship, was viewed as a traumatic separation to be avoided at all costs. One patient suggested to “keep a leash on the doctor that you’re most comfortable with.” Not being made explicitly aware or an active participant in the pending transfer of care also was detrimental to forming a positive connection with new providers. One parent expressed it this way: “The word abandonment is exactly how I feel. I feel like ‘they’ just took us and just threw us out there to an adult provider. . .” Lack of comfort in transitioning to adult care providers places patients in limbo, often resulting in forgoing or delaying necessary care. One patient expressed it this way: My knee has been hurting for years. . . They’re kind of like okay go see Dr. . . and I’m like Dr. . . is awesome, but he doesn’t deal with knees, he in turn refers me to somebody else and that person does not get back to me and I still haven’t to this day had an operation on my knee, but I’ve been told that I need it. I don’t know. A mother of a severely disabled adult, disillusioned but coping, tried to creatively work around barriers with familiar resources and described her situation in the following manner: . . . I don’t have an orthopedic doctor. Out of desperation I went to his pediatric doctor and he gave

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Table 3 Themes generated from categories and codes

Codes Abandonment Trust Traumatic Experience Anxiety Limbo Foregoing Care Communication Transition Timing Transparency Letting Go Insurance Issues Parental Expectations Insurance Literacy Self-Advocacy Self-care Health Skills Transition Resources Facility Capabilities Record Transfer Lack of Available Adult Healthcare Providers Lack of Adult Providers’ Experience with CP No Multidisciplinary Team Lack of Care Coordination Illness Focus Length of Visit Bedside Manner Variability of Transition Process Continuity of Providers One Anesthesia for Multiple Procedures Overlapping of Pediatric & Adult Care Providers Interactive Peer Support

Categories

Themes

Emotional Aspects of Transition Lost in Transition No bridge of care from one to another

Readiness Roadmap to Care Educational Needs of Transition

Access

List of None

Challenges of Current Delivery System

Recommendations for Improved Care Model

us a script and a letter of necessity for today so that at least I’m having his body jacket fixed, but with all of his weight loss, I know he needs care and it’s very frustrating. Of note is that many participants did not seem to have labeled their emotional reaction to transferring care until the focus group discussions. In both groups, members nonverbally acknowledged such comments about loss of trust and abandonment. 3.2. Theme 2: Roadmap to care Both patients and the parents stated they needed a Roadmap to Care that would prepare them for the HCT. Participants wanted the HCT process explicitly

One Stop Shopping

addressed by providers at the pediatric facility, beginning when the patient was in early adolescence. They wanted the process to be transparent, specific, and clear, with frank discussion around its trajectory. Based on these comments two categories emerged; readiness and educational needs of transition. One parent said: I think a discussion needs to occur earlier, a lot earlier and they just need to bring this up with the two parents and adolescent at an earlier age so that everybody, parent and child become comfortable with the fact that we are going to have a transition period and this is what you’re up against or going to face in the next several years or whatever and a discussion needs to start so that everybody’s aware of it. . .

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Parents and patients identified they also need to glean some understanding of what will be different about adult care, thus allowing them to be better prepared and make proactive, informed decisions around care requirements and preferences. One mother of a young man with significant global impairment reR injecflected on the differing approaches to Botox tions for her son’s spasticity. They don’t put him under anesthesia, they just kind of tranquilize him. . . My son doesn’t speak so he has no real way of communicating, but when he feels strongly about something, he sticks his tongue out and the whole time we were there, he had his tongue out. . . Patients identified self-advocacy as an important skill, and one for which they were ill-prepared. Whether patients described their parents as encouraging their self-sufficiency or described them as protective, they all indicated that they required more formal preparation in self-advocacy and needed to learn how to become more self-sufficient in managing their own care. Specific desired content included very practical aspects of how to balance multiple appointments, maintain personal healthcare records, and understand their health insurance coverage and how it interfaced with career and employment decisions. Because parents had not yet experienced the HCT process themselves, they were not fully equipped to help their children in this process. One patient said: As kids I mean we just see like pieces of paper being handed off to people and assuming it goes off to some magical land where it gets taken care of when that’s not the case at all and then when it gets handed over to us, you kind of don’t know what to do with it. Despite the patients’ expressed desire for selfadvocacy, their frustration with handling bureaucratic issues and the need for professional assistance was in evidence. One patient captured this ambivalence by stating: I don’t know if it was my parents doing it and I just thought that the office staff did it. I really don’t know, but I’m doing more work that leads me to advocate for myself, but I feel like you have assistants, you have secretaries; can’t somebody else send a letter or make a phone call? Why do I have to sit and wait to hear from the insurance company when you get paid to do this? So I mean when some of us actually take days off from work to try and sit

and get things covered to take care of ourselves so we can work, it just seems kind of unproductive. For the Roadmap to Care to be successful, communication regarding care planning triangulated across all players – patients, parents, and providers – is imperative. One patient commented: “Communicate with your patient to tell them that this is what’s going to happen and this is when it’s going to happen – so now it’s just oh, sorry, don’t know what to tell you. That’s huge.” Another patient noted that in order to smooth the path she helped facilitate communication between her providers during the transition. “I’ll email them both and go ‘listen, I’m coming to see you both this week, can you have a discussion, can you share the notes?”’ 3.3. Theme 3: A list of none The third theme, A List of None, serves as the overarching framework for the two categories: access and challenges of the current delivery system. The lack of appropriately trained/experienced adult providers was the most significant challenge patients and parents identified; their pediatric providers simply did not have anyone to whom to refer them. Specifically, primary care and specialty physicians willing to care for adults with CP were either unavailable or inexperienced. One parent echoed the impressions of all when she stated: “I don’t think there’s enough doctors out there that understand a wide range of disabilities like cerebral palsy. There’s just not enough.” The lack of appropriately trained and experienced providers resulted in questions regarding the quality of care rendered. One parent expressed concern that her son was not getting the care that he required following the HCT due to the doctors’ lack of knowledge and experience with children with CP. In reference to one new physician that the child was referred to: It was like he had no clue of my non-verbal child and I was totally put off by his suggestions. He has lost 12 pounds. This is a three year transition. He has contractures. . . I know he needs care and it’s very frustrating. While transfer of physiatry care was difficult, the lack of primary care providers and other specialists made HCT even more challenging. For example, adults with CP usually require less orthopedic surgical interventions than children. However, they do need ongoing orthopedic support. Unfortunately, there are few orthopedists who have expertise in caring for adults with CP.

R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare

One patient expressed her frustration about not being able to find an adult orthopedic surgeon who would care for her: Again like the orthopedic end, I asked my doctor if there was anybody he would recommend to transfer my care over, he did not know. So I was left in limbo and still to this day I’m looking for a surgeon that will take a look at me and my care. Another parent’s discussion of the difficulties in getting care for her adult child’s co-morbidities underscores the lack of specialty providers comfortable with the underlying developmental issues, and the need for a multidisciplinary focus. I don’t know if you can say this about all doctors but they do not know. I mean my son has cerebral palsy and you can’t go to an adult doctor. Like he has GI problems also. If I just went to my local hospital for convenience and went to a GI doctor, they’d look at him like oh my God, I don’t know what to do. Like they can do the GI part, but they don’t know the other part and that’s what is nice about coming here (referring to the pediatric setting). The GI doctors here have experience with a lot of different kids, but they’ve seen kids with cerebral palsy, so they’re not afraid of them or they can relate better, they have a little more to offer. Advances in multi-disciplinary care and care coordination in pediatric settings have created expectations of similar care delivery in adult settings. It is difficult for parents and patients to recognize that not only the quantity, but the type of service differs. Examples throughout the discussions included changes to brief specialty visits focusing on a single complaint rather than how the whole person was coping physically, emotionally, and psychologically. This was reflected in comments such as one from this mother who stated: And they give you 15 minutes. So like they’re trying to figure out, trying to figure it out in 15 minutes. When a normal person goes in for their 15 minutes, forget about all the other stuff and I don’t know about you guys but I always leave feeling like I didn’t get results. Such comments were reflective of a broader dissatisfaction with the lack of coordinated care covering the gamut of preventive, corrective, and restorative services. The participants’ unhappiness was eloquently summed up by one mother, herself a nurse, and robustly supported by the other participants. She stated:

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I think just because I work in the healthcare system and I’m biased because I work with adult patients, not pediatric patients, but there’s so many more comprehensive interdisciplinary pediatric services period for any illness than there are for adults. . . So there isn’t any continuity for us. . . Successful HCT is further complicated by structural issues such as the need to evaluate the provisions of insurance coverage and complete record transfer prior to scheduling the first visit with a provider and insurance coverage. This concern is captured in the next two quotes. A patient stated: My biggest obstacle in transitioning I thought was going to be the care, its been more of the insurance because insurance companies don’t understand. Her concern was echoed by a parent who stated: Record transfer is complicated. You have to get the medical records to the adult hospital before you can make the appointment, that’s going to be six months down the road. If there was a problem. . . . 3.4. Theme 4: One stop shopping Patients and parents discussed the need for truly coordinated care, not only at the pediatric and adult sites, but during the HCT process. The category, recommendations for an improved care model, was generated from this discussion and the predominant theme of One Stop Shopping emerged. From a parent perspective, the need for referrals to adult providers that they know are capable and committed to caring for individuals with CP was necessary, but not sufficient for transition. Parents and patients saw this as a collaborative activity, and rooted in the trusting relationships they had with their pediatric providers. Both parents and patients reported willingness to “do the footwork” if they had a vetted list of names of providers that might be a good match. Parents and patients were frustrated by their providers’, but lack of knowledge, in helping determine appropriate referrals to adult care providers. Such referrals are an important component of the HCT process for many patients, especially when needing to move to a new medical group or facility. This is captured in one parent’s comment: I would hope if you’re going to recommend the most precious thing I have to somebody else, you know that person or you know what they’re capable of doing. . . when meeting my son’s adult primary care doctor for the first time, it was the doctor that

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R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare

admitted he could not care for my son. We went on-line. Right there in his office and he pulled up all of the doctors. . . he was looking at the history, their education and he said we was going to choose between the older one and the younger ones and I was like I’ve got the two older ones and they don’t have the patience, let’s try the younger ones. Appropriate referrals were just the first step, however. There was an expressed desire for comprehensive care at the adult level that mirrors pediatric care. Parents stated a preference for a temporal transitional unit where adult and pediatric providers shared a philosophical approach, communicating freely around pediatric care issues and their manifestations and treatment in adulthood. Recognizing the increasing incidence in the number of children with CP who will be transitioning their care, one patient stated: “Now why can’t the (pediatric) hospital hire some adult doctors and work together? I mean there are enough of us I’m sure and I mean the kids are getting older and kids are living longer.” This sentiment was echoed in the parent group: It seems like there’s a big market here. I don’t understand why some hospital hasn’t caught on to this that this is a big market and it’s not going to stop, it’s going to keep growing. The children will live we hope for a very long time. It’s not an issue that goes away quickly. Patients identified the importance of the role of a social worker, nurse, care coordinator, or ombudsman who could help advocate on their behalf as needed, while teaching the necessary transition skills to patients and their families. Parents expressed similar needs, including the usefulness of support groups designed for information sharing regarding HCT processes and available services rather than primarily designed for emotional support. This opinion was summarized by one parent who stated: Support groups are great, but they take up your time. I’m too busy doing everything. I want to be knowledgeable and empowered. I want something where you can talk about your concerns, share ideas and have a nurse or a physician or something bring the information. Interestingly, what parents were asking for was similar to what they were experiencing during the focus group session. One parent stated: . . . this feels supportive and giving me a lot of knowledge from the professionals as well as from

other parents. I mean you all informed me on a lot of different things in which I can walk out of here and say wow, okay, I can go down the yellow brick road. It is empowering to me. 3.5. Methodological rigor Rigor of this qualitative research was evaluated by examining the findings’ credibility, fittingness, audibility, and confirmability [31,32]. To ensure credibility in this study, the research team asked several adult patient and parent participants to review the findings and confirm that they represented their thoughts, feelings and statements, thus verifying the content areas being studied. Interdisciplinary clinical CP experts also were asked to read the results and supported their authenticity. “Fittingness” was determined by evaluating how well the findings fit into other contexts outside of the immediate study setting. The meaningfulness of the research findings to the audience/readers was also supported by participants and interdisciplinary research team members. Audibility was achieved by producing a decision trail of dated, annotated notes of process and decisions that illuminated the analytic frame, thus allowing other researchers to arrive at similar conclusions. Confirmability was attained by the participants’ that credibility, fittingness, and audibility were achieved.

4. Discussion Patients and parents alike welcomed the opportunity to discuss their HCT experiences. Overall, the issues encountered and strategies for improvement voiced by participants align with research findings and professional recommendations. Young and colleagues’ (2009) interviewed youths (n = 15) and adults (n = 15) with neuromuscular conditions and identified access issues to care as major challenges, resulting in uncertainty and frustration [33]. These feelings were even more pronounced for the participants in this study. They so deeply valued the relationships they had with their providers that they felt abandoned when told that they needed to transfer care to an adult provider. The current state of active HCT planning for youths with special needs is in need of serious bolstering. The 2009–2010 National Survey of Children with Special Health Care Needs determined that only 40% of youths aged 12–17 with special health care needs received the services necessary to make appropriate transitions to

R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare

adult health care, work and independence [34]. The Healthy People 2020 goal for HCT planning for youths with special needs is a mere 10% increase [35]; perhaps underscoring the difficult realities in improving the state of care. To insure that no one is “lost in transition” action items that need to be addressed are formalized HCT processes and clinical care capacity for adult patients. Overarching these concerns, however, is the need for transparency in the HCT process. In whatever form it may take, transparency was highlighted as a crucial implication for pediatric providers caring for patients with special needs. Our study identified four general themes salient to focusing further work on developing effective transition models. The first theme of Lost in Transition identified the emotional upheaval of transferring care from pediatric to adult specialists. Many patients and their families felt stuck in limbo and had not completed a full transfer of care, resulting in delays in accessing much needed services. Interestingly, many had not identified the full impact of challenges with HCT until the focus group discussion. In response to these concerns, patients and families identified the importance of interactive peer support during the HCT process. Study participants noted that their participation in the group itself provided practical ideas for them as well as support. This practical suggestion, supported by participants’ experiences, is also recommended in the literature [36]. Support groups, online forums or even peer mentors who have already transferred care and can serve as a guide in the world of navigating adult health care would be a good resource for adolescents and young adults with CP. Parents could also connect with other parents who have experienced the transition, which would be especially helpful for patients with CP who have intellectual disability. A second theme, Roadmap to Care, delineated the need patients and parents felt for explicit planning of the HCT process over a prolonged period of time (years) in addition to training in self-advocacy. The literature supports a model that the appropriate age for the initiation of HCT planning for youths with and without chronic conditions is between the ages of 12– 14 years of age [37]. Providers should explicitly discuss the need for HCT well in advance of actively initiating the process, beginning with an objective individualized assessment of the patient’s abilities and future healthcare needs. These concepts were generally supported by focus group participants, with the caveat

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that HCT planning for CP is more challenging due to the broad range of intellectual and physical capacities as well as frequent co-morbid conditions. For families whose children will never be independent, such discussions may be very difficult as they raise a spectrum of issues such as legal guardianship that often have not been considered. Patients and parents in our focus groups and the literature alike [22] identified the potential benefit of a care coordinator, someone to help problem solve and navigate the “roadmap to care.” Patients suggested a social worker for the role, potentially due to experience with advocacy and navigation of systems, and also alluded to the significant psychosocial/emotional aspects involved in terminating a relationship that social workers, as mental health clinicians, are trained to address [38]. Other healthcare professionals, including nurses and patient care navigators, also could fulfill this function. The ability to obtain and synthesize clinical input from the pediatric medical providers who have been involved in the child’s care is critical to creating such a roadmap. As such, in considering a model of care that involves a navigator, attention must be paid to how clinical information is interpreted and prioritized. A collaborative system may be ideal. The third theme, A List of None, addresses the daunting challenge of lack of clinical capacity – both providers and sites – to care for adults with CP and similar conditions. A recurring theme throughout the literature [12,18,21] and in these focus groups was the lack of providers with expertise in caring for patients with the complexities of CP, including medical, surgical and developmental considerations. There was a noted desire across all study participants for adult providers with better understanding of CP. Peter (2009) surveyed 241 internal medicine providers and identified gaps in medical education related to congenital and childhood-onset conditions. Providers lack the knowledge needed regarding up to date treatments and research related to childhood-onset conditions [39]. This gap in knowledge was identified by participants in the focus groups and indicates a large systemic concern. It also suggests the need for educational opportunities and standards of care to be developed and shared between pediatricians and adult providers. A related need identified by participants in this study was the desire for a list of recommended adult providers. They wanted to know that their trusted pediatric provider not only values the adult provider’s skills, but also has direct communication with them.

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R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare

Pilot programs with populations such as Sickle Cell Disease [40] illustrate success of formal transfer programs which, while not providing on-site adult care, create formal bridges between pediatric and adult providers. In this pilot, as an example, pediatric providers accompanied patients on tours of adult facilities with an opportunity to introduce them to staff providers and staff that could potentially care for them. After the tour and meeting with adult staff, patients and parents had a chance to meet with the pediatric team back at the pediatric facility to discuss issues with known providers. Lastly, the pediatric provider offered to make the first appointment with the adult provider and then called to remind them about this visit. Such formal introductions increased follow through with adult visits in this small pilot, which offers just one model of connection that patients and parents in our study identified as a need. Finally, the concept of One Stop Shopping was very popular amongst the patients and parents involved in this study and raises broader issues regarding health care reimbursement. Studies suggest that healthcare for children with CP are most effective when delivered in multidisciplinary clinics [41,42]. This is consistent with what the participants in this study experienced in the pediatric setting and what they wished for after transitioning to adult care settings. Participants expressed a desire for a transitional unit and formal communication system for pediatric and adult providers to share care of complex patients. They envisioned a comanagement model, expanding the pediatric facility’s scope of services to accommodate adult populations. Unfortunately, current healthcare philosophy and policies direct resources to providing comprehensive care to children with special needs, but not to HCT planning or creating successful models for adult care. Today’s HCT models have built upon and been designed to fit within the current, fragmented structure and payment schemes of the U.S. healthcare system. Children with complex healthcare needs who have received their lifetime of specialty care at free-standing children’s hospitals may be cut off by these institutions when they reach a certain age due to regulatory restrictions and market demands. Despite these limitations, there is evidence in the literature that begins to look at co-management models for patients with chronic childhood onset conditions including CP [43], Cystic Fibrosis [44] and Diabetes [45], with specific transitional care clinics/inpatient units that have both pediatric and adult providers sharing care of the patients, at least during adolescence/young adulthood.

The need for co-management through Medical Home principles is addressed by patient advocacy groups (i.e., Family Voices) and in the new professional policies [46]. Emerging reimbursement strategies such as clinical outcome driven bundles could compensate for the type of care and time needed by patients with CP that is not captured under current insurance schemes. Accountable Care Organizations [47], a core feature of the Patient Protection and Affordable Care Act [48], are specifically designed to come together to provide such coordinated, high quality care to individuals with chronic care needs. Other components of the Patient Protection and Affordable Care Act have the potential to improve the transition process. The CMS Innovation Center is specifically charged with developing and testing new models of service delivery and financing, and provides opportunity to address interdisciplinary, coordinated transition planning [49]. Porter and Teisberg (2006) outline a business model in the context of this changing healthcare payment policy which provides one potential framework for the elements outlined by the patients and families requesting that all CP care be streamlined, with experts in the field continuing to care for these patients with complex special needs that they know well [50]. Adaptation to the financial aspects of care may provide the landscape to accommodate radical changes in clinical care, such as entirely separate young adult units for patients with special needs, which patients and parents in our study identified. 4.1. Limitations For this study, only two focus groups were conducted from one institution. Although the information the participants shared is invaluable to begin to understand their perspectives, it is not known whether additional or divergent information would have emerged from other focus groups should it have been possible to conduct these. The data for each focus group initially were analyzed separately and then the results were compared across groups. Because of the high degree of concordance between the patients’ and parents’ perspectives, the decision was made to combine the findings of the two groups for this report as to paint a more coherent picture of the transition process. This approach may, however, have diluted the patients’ and parents’ voices, and subtle differences in their perspectives may be muted inadvertently. The demographics of the sample reflect those of the entire pool of patients with CP who were prompted

R.L. DiFazio et al. / Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare

to transition their care to adult providers at this institution. Despite this, the sample composition does not completely capture the experiences and concerns of patients and parents from diverse cultural and socioeconomic backgrounds, especially for those who are non-English speaking. Equally difficult to capture is the perspective of patients who are non-verbal. For all of these groups, the HCT process likely presents unique challenges. Another limitation of this study is that the voices of patients and families who were lost to care remain unheard. For patients with CP, some of these individuals may have had mild deficits and whose needs were easily accommodated by providers in adult care settings. It is possible, however, these individuals found the transition process so arduous that they are completely foregoing care.

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solution must be developed in order to provide individuals with uninterrupted, high quality and developmentally appropriate health care. These solutions must focus on maximizing the lifelong functioning and wellbeing of individuals with CP. Our current climate of health care reform provides an opportunity to address the complex issue of HCT.

Acknowledgments This study was supported by a grant from the Peabody Foundation, Inc., specifically the William V. Tripp III Fund for the Advancement of Pediatric Orthopaedic Nursing Grant.

Conflict of interest 4.2. Future research directions The authors report no conflicts of interest. Future research needs to focus on the perspective of diverse populations as individuals from varied backgrounds are likely to experience other issues that impair transition from pediatric to adult care settings. Replication of this study with populations from differing geographic (e.g., rural) areas and service delivery models also would provide information that confirms, expands, or disputes these findings. Models of care that address the challenges identified by these focus group participants need to be developed and rigorously evaluated for their clinical efficacy. In order to evaluate and compare programs reliable and valid measures need to be developed. Until appropriate measures are available it will be virtually impossible to measure the outcomes of the HCT programs and provide standards for evidence based practice. In addition, healthcare organizations and specialty groups need to craft and promulgate evidence-based policies appropriate to their setting, including using condition-specific registries.

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