Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 7 (2014) 43–51 DOI 10.3233/PRM-140269 IOS Press

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Transition and transfer of adolescents and young adults with pediatric onset chronic disease: The patient and parent perspective Susan M. Fernandesa,b,∗, Joanne O’Sullivan-Oliveirac , Michael J. Landzbergb, Paul Khairyd , Patrice Melvine , Gregory S. Sawickif , Sonja Ziniele , Lisa B. Kenneyg, Katharine C. Garveyh , Amy Sobotai , Rebecca O’Brienj , Peter A. Nigrovick , Niraj Sharmal and Laurie N. Fishmanm a

Lucile Packard Children’s Hospital at Stanford, Palo Alto, CA, USA Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA c Department of Surgery/Nursing, Boston Children’s Hospital, Division of Nursing, Curry College, Boston, MA, USA d Department of Medicine, Montreal Heart Institute, Montreal, Canada e Center for Patient Safety and Quality Research, Boston Children’s Hospital, Boston, MA, USA f Department of Medicine, Division of Pulmonary and Respiratory Diseases, Boston Children’s Hospital, Boston, MA, USA g Dana-Farber Cancer Institute and Department of Medicine, Division of Hematology and Oncology, Boston Children’s Hospital, Boston, MA, USA h Department of Medicine, Division of Endocrinology, Boston Children’s Hospital, Boston, MA, USA i Department of Medicine, Division of Hematology and Oncology, Boston Medical Center, Boston, MA, USA j Department of Adolescent Medicine, Boston Children’s Hospital, Boston, MA, USA k Department of Medicine, Division of Immunology, Boston Children’s Hospital and Center for Adults with Pediatric Rheumatic Illness, Brigham and Women’s Hospital, Boston, MA, USA l Department of Medicine, Division of General Medicine, Brigham and Women’s Hospital and Department of Medicine, Division of Pediatrics, Boston Children’s Hospital, Boston, MA, USA m Department of Medicine, Division of Gastroenterology, Boston Children’s Hospital, Boston, MA, USA b

Accepted 14 February 2014

Abstract. PURPOSE: To determine patients’ and parents’ perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care. METHODS: A self-report survey was administered to a convenience sample of patients (16–25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians. RESULTS: A total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years.

∗ Corresponding author: Susan M. Fernandes, LPD, PA-C, Lucile Packard Children’s Hospital at Stanford. 750 Welch Road, Suite 321.

Palo Alto, CA 94304, USA. Tel.: +1 650 724 5554; Fax: +1 650 723 8115; E-mail: [email protected].

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

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S.M. Fernandes et al. / Patient and parent perceptions of transition and transfer

CONCLUSION: There are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care selfmanagement in adulthood and successful transfer to adult oriented care. Keywords: Health care transition, health care self-management, pediatric onset chronic disease

1. Introduction The overwhelming majority of patients with pediatric onset chronic disease, such as congenital heart disease, cancer, organ transplantation, cystic fibrosis, sickle cell disease, hemophilia, diabetes, and inflammatory bowel disease, are expected to live well into adulthood [1]. Ensuring that these patients have the knowledge and skills they need to manage their own health care in adulthood is an integral component of comprehensive care that is designed to improve quality of life, enhance physical and emotional functioning and decrease morbidity. A recent expert consensus statement from the American Academy of Pediatrics suggests that high-quality preparation for transfer should be deemed a “basic standard of care;” however, this transition education has not had “wide spread implementation” [2]. Although many clinicians believe they provide patients with adequate transition (e.g. health care self-management) education, most provide this type of education without a standardized approach and without the use of validated transition knowledge and skills assessment tools [3]. In addition, several studies restricted to specific pediatric chronic diseases have demonstrated a lack of patient and parental knowledge of basic components of transition education, including general disease knowledge and the need for lifelong uninterrupted health surveillance [4–9]. Therefore, the objectives of this study were (1) to assess the delivery of transition education, and (2) to identify barriers to transfer to adult oriented care as well as readiness for transfer as perceived by patients with a variety of pediatric chronic diseases and their parents.

2. Methods 2.1. Survey design A survey of patients and parents at a 396-bed tertiary care pediatric hospital was conducted. To date, this hospital does not have an institution-wide policy regarding timing of transfer to adult oriented care. In addition, the provision of transition education is

highly variable depending on the clinic, department, and healthcare team and is usually provided informally [3]. Patients 16–25 years of age with pediatric onset chronic medical conditions, as well as their parents, were invited to participate in the study. Recruitment began in November of 2010 and was completed in September of 2011 when the minimum recruitment goal of 100 patients and parents was achieved. The recruitment took place in 8 subspecialty outpatient clinics, except the oncology clinic where eligible patients and parents were invited to participate in the survey via mail due to on-site recruitment restrictions; oncology patients presenting to other outpatient clinics were recruited at those locations. Inclusion criteria were presence of a pediatric onset chronic condition that would likely require lifelong medical care, ongoing care in one of the hospital’s outpatient clinics for at least two years, and ability to complete the survey. 2.2. Survey tool The survey tools were developed over a 12-month time frame through a working group of 10 researchers and several patient advocates (members of the hospital based Family Advisory Council). Researchers were required to review literature in their area of expertise and a recent national survey on healthcare transition, and submit potential questions for inclusion in the survey [10]. The final survey design was guided by a survey methodologist (SZ) and was based on group consensus. Pilot testing of the survey was conducted by members of the hospital based Teen Advisory Council to ensure that the survey content and language was age appropriate. No changes were made to the survey based on this testing. The final patient survey tool included 30 multiplechoice questions and one free-response question, which asked if there was anything else respondents wished to share regarding the transition and transfer process. The first section of the survey asked whether anyone on their healthcare team provided education regarding: their healthcare condition; indications for medication use and potential side effects; symptoms that require urgent evaluation; impact of disease on education, career and the health of their future children;

S.M. Fernandes et al. / Patient and parent perceptions of transition and transfer

and the impact of high risk behaviors. Female patients were instructed to answer additional questions about birth control and pregnancy. Each question included the options “yes”, “no” and “don’t know” as responses. Patients were instructed to select “yes” if their healthcare team discussed the transition topic at least once. Patient age, diagnosis and gender were obtained by review of available medical records. The second section of the survey explored timing and perceived barriers to transfer to adult oriented care. Patients were questioned about the age they thought they would be ready to transfer to a hospital or healthcare provider that cared for adults. Patients were then asked questions about perceived barriers to transfer to a hospital or healthcare provider that cares for adults. The survey provided several potential barriers based on a literature review which included concerns regarding lack of understanding of their medical condition by adult physicians, health insurance issues, and emotional attachment of the provider, themselves or their parent. There was also an opportunity for subjects to list other perceived barriers. The parallel parent survey addressed the same questions from a parent’s perspective. It specifically asked whether the transition education topics listed above had been discussed with their child. As in the patient survey, parents had the option of choosing “yes”, “no” or “don’t know” and were instructed to select “yes” if their healthcare team provided at least one discussion with their child about the transition topic. Parents were also asked at what age they thought their child would be ready to transfer to an adult hospital or adult care provider, and their perception of impediments as listed on the patient survey. The parental survey also included additional questions regarding allocation of resources. Parents were asked if they thought the hospital should provide resources to improve the delivery of health care self-management education to patients and if the hospital should provide resources to streamline the transfer process. Parents provided their demographic information including their parental role, race, ethnicity, highest level of education and type of insurance.

3. Data analysis Descriptive analyses of patient and parent demographics (including gender, patient age, parent race/ ethnicity, insurance, and level of education) as well as the child’s primary medical condition were summa-

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Table 1 Patient and parent characteristics Total Responses Age (yrs) Mean ± SD Gender Female Patients’ Diagnosis (n, %) Cancer Type 1 diabetes Congenital heart disease Juvenile rheumatoid arthritis Hematologic disorder Inflammatory bowel disease Cystic fibrosis Solid organ transplant Genetic disorders Renal disease requiring dialysis Other Hispanic Yes Race White Education level Lower than 12th grade Graduated high school Associate’s degree Bachelor’s degree Master’s/doctoral degree Insurance Private insurance State aid ∗ One

Parents N = 104

Patients N = 155 18.8 ± 2.3

80 (76.9%)

88 (56.8%)

21 (20.2%) 10 (9.6%) 13 (12.5%) 10 (9.6%) 16 (15.4%) 12 (11.5%) 5 (4.8%) 6 (5.8%) 5 (4.8%) 0 (0.0%) 6 (5.8%)

23 (14.8%)∗ 25 (16.1%) 21 (13.5%)∗ 20 (12.9%) 15 (9.7%) 16 (10.3%) 11 (7.1%) 7 (4.5%) 5 (3.2%) 4 (2.6%) 9 (5.8%)

6 (5.8%) 90 (86.5%) 3 (3.0%) 29 (29.3%) 17 (17.2%) 28 (28.3%) 22 (22.2%) 83 (79.8%) 15 (14.4%)

patient had both complex congenital heart disease and cancer.

rized using means and standard deviations for continuous variables and proportions for categorical variables. Parent and patient perceptions were compared regarding the delivery of transition education, barriers to the transition of patients into adult care, and perceived age at readiness for transfer using generalized estimating equations to account for parent-patient clustering. In order to control for the familywise error rate, HolmBonferroni adjusted p values were used to identify statistical differences across parent and patient groups. All analyses were performed using SAS software version 9.3 (SAS Institute, Cary, NC). A content analysis approach was used to interpret the free-response question. This analysis was conducted by a member of the research team with expertise in qualitative research (JO) [11,12]. The freetext comments about the participants’ perceptions regarding their experiences constituted the units of analysis. The text was separated into meaning units that were condensed, summarized, and labeled with a code. These codes were reviewed for similarities and differences, sorted into categories, and then studied for underlying meanings threaded through the whole as

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S.M. Fernandes et al. / Patient and parent perceptions of transition and transfer Table 2 Delivery of transition education: A comparison of patient and parental perceptions Educational topic Disease Medication Medication side effects Symptoms requiring urgent evaluation Risk of alcohol Impact of disease on future education Risk of tobacco use Risk of illicit drug use Birth control considerations and risk Unprotected intercourse Risk of pregnancy Impact of disease on future offspring Impact of disease on future career/vocation

Patient (N = 155) % 95% ci 91.6% (86.1–95.1) 89.9% (83.7–94.4) 79.1% (71.6–85.1) 77.4% (70.2–83.3) 61.3% (53.4–68.6) 60.0% (52.1–67.4) 52.3% (44.4–60.0) 48.4% (40.6–56.2) 44.9% (35.0–55.3) 42.6% (35.0–50.5) 38.9% (29.4–49.3) 31.6% (24.8–39.3) 28.4% (21.9–36.0)

Parent (N = 104) % 95% ci 94.2% (87.8–97.4) 100.0% (96.5–100) 68.5% (58.2–77.3) 78.9% (70.0–85.6) 37.5% (28.7–47.2) 59.6% (49.9–68.6) 51.0% (41.4–60.4) 33.7% (25.2–43.2) 23.1% (13.6–36.4) 18.3% (12.0–26.9) 30.8% (19.8–44.5) 39.4% (30.5–49.1) 30.8% (22.7–40.3)

p value 0.387 < 0.001 0.042 0.771 < 0.001 0.942 0.825 0.011 0.003 < 0.001 0.241 0.152 0.658

Note: Bolded p values are significant based on the sequential Holm-Bonferroni adjusted threshold.

themes. The project was approved by the Boston Children’s Hospital Committee on Clinical Investigation.

4. Results A total of 155 patients and 104 parents agreed to study participation; 93 (76%) were patient-parent/guardian pairs. Participation rates for patients (N = 132) and parents (N = 83) recruited in the outpatient clinics were 97% and 93% respectively. Participation rates for oncology patients (N = 23) and parents (N = 21) recruited by mail were 19% and 20%, respectively. Patient and parental characteristics are displayed in Table 1. Patients who participated in this study were of similar ethnicity, race and insurance type as the population of patients served by the center. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Most parental respondents (89%) reported that they usually brought their child to their medical visits. The majority of parents were highly educated (68% with at least an associate’s degree) and had private healthcare insurance (80%). 4.1. Delivery of transition education and assessment A comparison of the patient and parental perceptions regarding the delivery of transition education can be found in Table 2. The overwhelming majority of patients and parents reported that education regarding the patient’s medical condition was delivered (92% and 94% respectively). In addition, the majority of patients and parents reported receiving education about medications (90% vs 100% respectively) although patients were less likely to report receiving this education than

parents (p < 0.001). Less than half the patients and parents reported receiving education about unprotected intercourse, impact of disease on future offspring, birth control, and risks of pregnancy. Patients were more likely than parents to state that education regarding unprotected intercourse (43% versus 18%, p < 0.001) and birth control (45% versus 23%, p = 0.003) was received. Similarly, patients were more likely to indicate that education regarding alcohol-related risks (61% versus 38%, p < 0.001) was received. Only a small number of respondents reported receiving education regarding impact of disease on future career/vocation (28% and 31% respectively). 4.2. Timing of transfer to adult oriented care Over 50% of patients and parents anticipated being ready for transfer from pediatric to adult oriented care before age 25 years (56% and 59% respectively; see Fig. 1). Few patients and parents stated they were unsure about the timing of readiness (17% and 15%) and 12% of patients and 9% of parents did not think that transfer readiness would be achievable regardless of age. Of note, there was no significant difference in perceived readiness for transfer to adult oriented care based on patient age, gender or diagnostic group, or parental ethnicity, race, level of education, type of insurance or relationship to the child. 4.3. Barriers to transfer to adult oriented care A comparison of patient and parental perceptions regarding the most commonly perceived barriers to transfer are found in Table 3. Emotional attachment to the patient’s medical institution or pediatric subspe-

S.M. Fernandes et al. / Patient and parent perceptions of transition and transfer

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Table 3 Barriers to adult oriented care: A comparison of patient and parental perceptions Perceived Barrier Patient attachment pediatric institution Patient attachment to the provider Pediatric provider attachment to patient/family Lack of provider in specialty Parent attachment to the provider Parent attachment to pediatric institution Health insurance

Patient (N = 155) % 95% ci 47.7% (40.0–55.6) 44.5% (36.9–52.4) 40.0% (32.6–47.9) 25.8% (19.5–33.3) 23.2% (17.2–30.5) 18.7% (13.3–25.6) 18.7% (13.3–25.6)

Parent (N = 104) % 95% ci 50.0% (40.5–59.5) 44.2% (35.0–53.9) 36.5% (27.9–46.2) 40.4% (31.4–50.1) 48.1% (38.7–57.6) 52.9% (43.3–62.3) 15.4% (9.6–23.6)

p value 0.697 0.959 0.515 0.005 < 0.001 < 0.001 0.476

Note: Bolded p values are significant based on the sequential Holm-Bonferroni adjusted threshold.

Age at readiness for transfer  18 years  21 years < 25 years  30 years Never Don’t Know

% 2.6% 31.6% 55.5% 68.4% 11.6% 17.4%

Patient 95% ci (0.7–6.5) (24.8–39.3) (47.6–63.1) (60.7–75.2) (7.0–17.7) (11.8–24.3)

% 0.0% 28.9% 58.7% 74.0% 8.7% 15.4%

Parent 95% ci (0.0–3.5) (21.0–38.3) (49.0–67.7) (64.8–81.6) (4.0–15.8) (9.1–23.8)

Fig. 1. Patients’ and parents’ perceived age at readiness for transfer to adult-oriented care.

cialty care provider and perceived attachment of the pediatric subspecialty provider to the patient and family were the most common identified barriers. Parents were more likely than patients to perceive parental attachment issues as barriers to transition, including to the pediatric institution (53% versus 19%, p < 0.001) and pediatric provider (48% versus 23%, p < 0.001). This emotional attachment did not appear to impact readiness to transfer to adult oriented care by age 25 years. Parents were more likely than their children to perceive the lack of adult subspecialty providers as a barrier to adult oriented care (40% versus 26%, p = 0.005). Perceived barriers to adult oriented care appeared to be influenced by underlying diagnosis. Patients with

congenital heart disease were far more likely to perceive a lack of adult subspecialty care providers as a barrier to adult oriented care, as compared to patients with diseases from other diagnostic groups (60% versus 21%, p < 0.001). Patients with cancer, inflammatory bowel disease and type 1 diabetes were more likely to cite parental attachment to the pediatric medical provider as a barrier to adult oriented care when compared to other tested patient groups (44% versus 20%, p = 0.013; 41% versus 16%, p = 0.012; 32% versus 15%, p = 0.044 respectively). 4.4. Resources Most parents (73%) supported the allocation of resources to increase the delivery of transition edu-

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S.M. Fernandes et al. / Patient and parent perceptions of transition and transfer

cation and the assessment of patient’s transition related knowledge and skills. Almost all (95%) parents supported the allocation of resources to improve and streamline the process for transferring patients from pediatric- to adult-oriented care.

5. Qualitative results A total of 22/166 (13%) patient respondents and 30/104 (29%) parent respondents replied to the openended question inviting further input regarding the transition and transfer processes. Two major themes, emerged, namely “success” and “fear”. Both patients and parents expressed positive feelings towards relationships developed with their pediatric providers and many described a sense of accomplishment by overcoming physical and emotional hurdles. “My doctors have been very invested in my well-being and really want me to succeed,” stated one patient. Another stated, “The doctors helped me grow and get through everything.” A parent summarized success as feeling as though her child was healthy after requiring medical treatment since infancy, “I am forever thankful for the healthy normal life [my daughter] has.” The idea of moving from adolescence to adulthood and from pediatrics to adult oriented care was associated with some level of fear both by parents and patients. One patient commented, “I had to switch to a new doctor this year. It is really hard being 18.” Parents were more likely to express this fear than patients and had additional concerns about “letting go” and feeling excluded from their adult child’s medical decisions. “It will be hard to transition to an unfamiliar team, they don’t know her or her history” stated one parent. Another articulated her fear in this way: “having a seriously ill child is devastating to a family. The fear for your child’s life, feeling of helplessness- to make everything ok, confusion, and desperation are just a few feelings that run through your head on a regular basis.” Some parents expressed strategies that could help alleviate their fears, such as utilizing the resources of a pediatric provider who could assist/mediate part of the effectiveness of transition by working together with adult providers and building patients’/parents’ transition support groups.

6. Discussion This single-institution study assessing perceptions about transition found that adolescents and young

adults with a variety of pediatric onset chronic diseases, as well as parents of these youth, perceived that education about their lifelong disease and its treatment were provided. However, education regarding issues of reproductive health, impact of high-risk health behaviors, and impact of disease on future employment/vocation was frequently reported as lacking. Emotional attachment to pediatric providers and concerns over the lack of specialty internal medicine adult providers were endorsed as common barriers to transfer. Nevertheless, the majority of patients and parents perceived readiness for transfer by patient age 25 years, albeit with lingering concerns and anxiety about transition. Of note, these findings were consistent among all disease groups. 6.1. Provision of transition education/assessment Education regarding patient-specific disease appeared to be areas perceived to be provided on a consistent basis. Patients and parents frequently reported a lack of education related to unprotected intercourse, impact of disease on future offspring and the potential risks of birth control and pregnancy in female patients. Fewer than 50% of the patients surveyed stated that they recalled a single discussion about these topics by their subspecialty provider. This gap in education was observed across all diagnostic groups and older patients were no more likely to report receiving this education than younger patients. The perceived lack of education in these areas is consistent with previously published reports in patients with congenital heart disease and in childhood cancer survivors [13,14]. This reported lack of education, if representative of true lack of successful dissemination of health-related information, could have deleterious consequences since many patients with pediatric onset chronic diseases are at increased risk of maternal and fetal adverse events during pregnancy [15]. Patients may be at increased risk for anomalies in their offspring, and counseling and education may assist both in guiding parental oversight and pregnancy. Moreover, some lifelong diseases or their associated therapies can result in infertility; counseling regarding specific adversities can help effected individuals better understand longer-term implications of therapeutic choices made during times of acute or sub-acute medical worsening [16,17]. Education regarding contraception, pregnancy risk, and the impact of disease on offspring appears essential to ensuring that patients are equipped with the necessary information to make informed decisions about

S.M. Fernandes et al. / Patient and parent perceptions of transition and transfer

their bodies and their future. Literature suggest that these conversations need to begin in early adolescence, since nearly 50% of adolescents in the general population have engaged in sexual intercourse [18]. Adolescents with pediatric onset disorders appear to follow similar general population trends; for example, 28% of sickle cell patients and 51% of cystic fibrosis patients between the ages of 12 to 19 years have self-reported a history of sexual intercourse [19]. Education regarding high-risk behaviors such as alcohol, tobacco and illicit drug use were reported by approximately half the patients, with parents less likely to perceive delivery of such education than patients. These types of conversations may occur privately between clinicians and patients during some aspect of the visit. Despite this encouraging finding, there remain significant gaps in education about high-risk behaviors. Consistent delivery of this type of education is imperative as previous studies suggest that patients with pediatric onset chronic disease participate in high-risk activities, with behavioral patterns that are similar to the general population [20,21]. Primary care providers can give general counsel regarding these behaviors, but specialist involvement may be important because highrisk activities may have specific implications for the chronic disease or its treatment that are better known to the subspecialty team. The patients and parents in this study rarely reported receiving education regarding the impact of disease on future education and career/vocation. While primary care providers also need to ensure that conversations occur that help patients and their families with “envisioning a future” [22], specialty clinicians may have unique perspectives regarding the realistic capabilities of individuals with specific chronic conditions. 6.2. Perceived readiness and barriers to transfer to adult oriented care Patients and parents expressed a spectrum of views regarding readiness to transfer to adult oriented care, with no detectable trend based on age, gender or diagnostic group. Despite the call for transfer from pediatric to adult oriented care by age 21 years by many professional health care associations, nearly 3/4 of the patients and parents did not believe they would be ready to transfer by this age. However, more than half said they would be ready to transfer before age 25 years. A slightly older age at transfer may improve readiness for transfer but many adolescents feel that age should not be the only determinant [23]. Incorpo-

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ration of the Transition Readiness Assessment Questionnaire [24] might improve accuracy of patients’ and parents’ assessment of their readiness to transfer. In addition, allowing the adolescent to participate in the plan for transition appears to be desirable [23] and may improve patient satisfaction. Although some patients and parents might never feel ready for transfer, preparation beginning in early adolescence and a flexible yet structured plan for transition and transfer may help alleviate some anxiety and fear. Termination of treatment by the pediatric provider through a graduation type celebration can bring closure for the patient and family and encourage the development of relationships with adult oriented healthcare [22]. Emotional attachment or bond between patient, parent, and provider was noted by 45% of patients and 44% of parents in our study. Although this has been previously reported as a barrier to adult oriented care [22,25] this appears to be less common that what is perceived by pediatric providers [3,23]. The perceived lack of adult specialty providers did not correlate with the patients’ or the parents’ anticipated readiness to transfer to adult oriented care by age 25 years. Patients with congenital heart disease were far more likely to express concerns over the lack of adult care providers than patients from other diagnostic groups. While underlying reasons remain to be clarified, the location and provision of adult congenital heart disease care can remain unclear to patients and families [26,27]. For example, formal training pathways and accreditation for specialists claiming expertise in adult congenital heart disease have only begun to be implemented [28,29]. These factors may contribute to the apprehension expressed by patients and parents, which may be lessened with improved transition educational programming. The self-reported barriers to transfer to adult oriented care appear multi-factorial and include emotional attachment, perceived lack of providers, and fear on the part of both the parents and the patients facing lifelong medical disease. These fears should also be addressed in transition education programs that facilitate a gradual shift from parent directed to patientdirected (and as appropriate, parent-supported) care management. Reassurance that a child possesses the skills to successfully manage his or her health care can ease parental fears of “letting go.” In addition, ensuring that patients and their parents will have access to qualified adult subspecialists when they leave pediatrics can help alleviate fears of abandonment. Pediatric subspecialists should avoid messages implying

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that they are the only qualified clinicians capable of providing appropriate care, as has been noted in previous studies [30]. Given the increasing number of adult survivors of pediatric onset chronic disease and projected shortage of pediatric subspecialty providers [31] it is unlikely that pediatric institutions will have the resources required to care for the rapidly growing population of adults with chronic pediatric-onset diseases. In addition, as this population continues to age, the appearance of chronic adult co-morbidities will necessitate resources and expertise that are unavailable to pediatric subspecialists, nurses, and ancillary staff. There is an urgent need for multi-disciplinary teams to engage adult subspecialty providers and establish systems that allow for a gradual transition of care, while providing patients and their families with confidence that all members of the care team are competent and qualified.

8. Conclusion Education around transition from pediatric to adult oriented care is an integral and important component of high-quality healthcare for patients with pediatric onset chronic disease. However, transition education is most often provided on an inconsistent and informal basis. Our results suggest that, regardless of whether or not clinicians are providing this education, patients and their parents across a wide spectrum of pediatric onset chronic disease report significant gaps in this type of education. Optimal timing, content and delivery of transition education remains to be determined; but strongly suggest that this educational process should be initiated early in adolescence and be based on the results of standardized assessment tools and carried out through a formal and monitored process.

Acknowledgments 7. Limitations The population of patients and parents studied was derived from a single pediatric institution, and as such, results may not be generalizable to other health care settings. In particular, programs in several adult health care facilities currently accept young adults with particular chronic diseases, potentially accounting for our observation that concern about lack of adult providers was far less than in previous studies. The majority of patients had private insurance, which may limit generalizability. Exclusion of patients with cognitive impairment precludes extrapolations of the findings to this high-risk population. Results reflect self-reporting and are, therefore, subject to errors in recall and potential social desirability response bias, which may result in an over- or underestimation of prevalence estimates. The data provided does not address the extent, quality or effectiveness of transition education provision and the small number of subjects in each diagnostic group limits generalizability and our ability to make comparison between these groups. Having only one open-ended survey question may result in leading question bias. Given the limited number of responses to the open-ended survey question (patients 13% and parents 30%) this part of the study must be considered exploratory in nature. Finally, the cross-sectional nature of this study does not allow for inferences regarding cause-and-effect relationships.

The authors would like to acknowledge the contributions to this project by the hospital’s Family and Teen Advisory Councils; Mathieu Clair, M.D.; Laura Risch, B.S.; Douglas-Jarrett Turno, Nathan Demars; Susan Shanske, LCSW; Rhonda Fritz, NP; Richard C. Antonelli, M.D. and Emily Harris. This research was funded in part by the Boston Children’s Hospital Program for Patient Safety and Quality and the Dunlevie Foundation. PAN is supported by the Cogan Family Foundation.

Conflict of interest The authors report no conflict of interest.

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