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Can J Cardiol. Sep 2009; 25(9): e317–e322.
PMCID: PMC2780894

Language: English | French

Transition to adult health care for adolescents and young adults with congenital heart disease: Perspectives of the patient, parent and health care provider

Abstract

BACKGROUND:

Pediatric institutions play a large role in preparing young adults with congenital heart disease to transition to adult care.

OBJECTIVE:

To determine the perspectives of patients, parents and providers on transition preparation.

METHODS:

Patients aged nine to 18 years with congenital heart defects and their respective parent(s) participated in semistructured interviews. Health care providers completed a self-administered survey.

RESULTS:

A total of 23 patients, 22 parents and 45 health care providers were enrolled in the study. Only 36% of patients demonstrated a clear understanding of transition and its implications for their cardiac care. Parents were extensively involved in care activities, with 95% accompanying their child to visits at the clinic, 68% staying with their child for the entire visit and 45% administering their medication. Children more knowledgeable about their diagnosis demonstrated a better understanding about their transition to adult care (100% versus 7%, respectively; P<0.01) and were more likely to communicate directly with their providers than those who were less or not knowledgeable (88% versus 33%, respectively; P=0.03). Nurses were more likely than physicians to view increased parental involvement in care activities as a barrier to transition preparation (37% versus 5%, respectively; P=0.02).

CONCLUSIONS:

A lack of clear role expectations indicates a need for the pediatric health care setting to adapt appropriately to address the shifting needs of adolescent and young adult patients and their families. A formalized approach to transition preparation for adolescents with congenital heart disease needs to emphasize comprehensive education. A delegation of explicit responsibilities and the clear definition of roles for parents, providers and patients are necessary to provide young adults with the resources and support necessary to achieve a successful transition to adult care.

Keywords: Congenital heart disease, Education, Health care delivery, Pediatrics

Résumé

HISTORIQUE :

Les établissements pédiatriques jouent un rôle important dans la préparation des jeunes adultes ayant une cardiopathie congénitale à la transition aux soins pour adultes.

OBJECTIF :

Déterminer les points de vue des patients, des parents et des dispensateurs de soins sur la préparation à la transition.

MÉTHODOLOGIE :

Les patients de neuf à 18 ans ayant une cardiopathie congénitale et leur(s) parent(s) respectif(s) ont participé à des entrevues semistructurées. Les dispensateurs de soins ont rempli un sondage autoadministré.

RÉSULTATS :

Au total, 23 patients, 22 parents et 45 dispensateurs de soins ont participé à l’étude. Seulement 36 % des patients comprenaient clairement la transition et ses répercussions sur leurs soins cardiaques. Les parents participaient abondamment aux activités reliées aux soins, 95 % d’entre eux accompagnant leur enfant aux visites à la clinique, 68 % demeurant avec leur enfant pendant toute la visite et 45 % leur administrant leurs médicaments. Les enfants mieux informés de leur diagnostic comprenaient mieux la transition aux soins aux adultes (100 % par rapport à 7 %, respectivement, P<0,01) et étaient plus susceptibles de communiquer directement avec leur dispensateur que ceux qui étaient moins informés ou qui ne l’étaient pas du tout (88 % par rapport à 33 %, respectivement; P=0,03). Les infirmières étaient plus susceptibles que les médecins de percevoir la participation accrue des parents aux soins comme un obstacle à la préparation à la transition (37 % par rapport à 5 %, respectivement; P=0,02).

CONCLUSIONS :

L’absence d’attentes claires quant aux rôles démontre la nécessité que le milieu de la santé pédiatrique s’adapte convenablement aux besoins évolutifs des patients adolescents et jeunes adultes ainsi qu’à ceux de leur famille. Une démarche officielle de préparation à la transition pour les adolescents ayant une cardiopathie congénitale doit s’attarder sur une formation complète. Il est essentiel de déléguer explicitement les responsabilités et de définir clairement les rôles des parents, des dispensateurs et des patients pour que les jeunes adultes disposent des ressources et du soutien nécessaires pour vivre une transition réussie vers les soins pour adultes.

Approximately 85% of children born with congenital heart disease (CHD) survive into adulthood (1,2). This increasing phenomenon has created a need for transition, which 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” (3). Ensuring continuity of quality care is the primary goal of transition. It is crucial that young adults with CHD are made aware of the need for regular medical follow-up because they are at high risk for complications later in adulthood (411). A previous study (12) found that only 47% of CHD patients transition to adult care successfully.

Preparing young adults for the change in health care setting is vital to a successful transition to adult care (3,13,14). It is appropriate to consider the role of the family, particularly parents, because they serve as integral members of their child’s health care team (15). Educating patients about their diagnosis, management and preventative health measures – both general and diagnosis-specific (12,13,16) – and encouraging independence and self-advocacy in the adolescent patient (14,15) reinforces the importance of ongoing care. Referral to adult practitioners must be facilitated (12). Patients and providers need to be aware of the differences between adult and pediatric care (17,18), and institutional support from all members of the pediatric health care team must exist to support all aspects involved in preparation (16,19). Also requiring consideration is preparation for the patient’s transition to adult life, addressing sexuality, family planning and employment. All of these issues need to be addressed systematically and comrehensively to ensure that adolescents with CHD are prepared to take complete responsibility for their health (20).

We examined the attitudes and opinions regarding transition and its necessary preparation from the perspectives of patients, their parents and health care providers in a pediatric cardiology outpatient clinic.

METHODS

Cohort description and data collection

A sample of consecutive patients and their respective parents who presented for regular follow-up in the pediatric cardiology outpatient clinic over a six-week period were asked to participate in the study. Those who showed interest were enrolled. Eligible patients had congenital heart defects and were between nine and 18 years of age at the time of the study. Patients with developmental delay or disability were excluded. No formal ‘transition program’ was in place at the time. Semistructured interviews were conducted by research staff with each patient and his or her parent(s) separately, whereby a set number of questions were asked of the respondent. However, the interview was presented as a discussion in which respondents were free to ask their own questions and discuss issues they felt were relevant. A self-administered survey was given to health care providers including pediatric cardiologists, nurses and allied health professionals (dieticians, social workers, occupational therapists and child-life specialists). The study was approved by the institutional research ethics board. The observational nature of the study precluded the need for individual consent; an explanatory letter was provided in lieu of a consent form and consent was inferred from participation.

Interviews

Interviews with the patient focused on how knowledgeable the patient was about his or her diagnosis, antibiotic prophylaxis and medications. Specific attention was given to the amount of discussion providers dedicated to smoking, alcohol consumption, sexuality and physical activity in relation to the patient’s heart condition. The interview explored the patient’s current knowledge about transition and what topics the patient wished to receive more information about at his or her routine clinic visits. A total of 14 questions were asked.

Interviews with parents focused on assessing their knowledge of and concerns about the transition process, and whether they perceived their child to be ready for transition. Information was obtained regarding the extent of involvement of the parent(s) in their child’s care and what the parents believed about their roles and the roles of their child, nurses and physician in preparing their child for transition. A total of 17 questions were asked. The interview duration was between 15 min and 25 min.

Survey

The survey for health care providers examined the opinions and attitudes about the state of transition preparation in the outpatient clinic, what they perceived as barriers to successfully transitioning their patients, what they currently do to prepare them and what they felt was necessary to prepare their patients more effectively. The survey consisted of six questions.

Statistical analysis

Data are presented as means with SDs, medians with ranges, and frequencies as appropriate. Associations between the parents’ and children’s responses, as well as interprofessional differences in responses to the health care provider survey, were determined using Fisher’s exact test, Student’s t test with Sattertwaite correction if necessary and general linear models as appropriate. Univariate analysis was performed because the small sample size was not amenable to multivariable comparisons. All statistical analyses were performed using SAS Statistical Software version 9.1 (SAS Institute Inc, USA).

RESULTS

A total of 23 patients (nine girls [39%]), 22 of 23 parents and 45 of 134 health care providers participated in the study. All patients and parents who were asked to participate agreed, except for one parent who could not complete the interview because of time constraints. Patients recruited from the CHD clinic were between nine and 18 years of age at the time of the interview; nearly one-half (n=11 [48%]) were between 13 and 16 years of age. The diagnoses of patients and a summary of their medical care are detailed in Table 1. The health care provider survey was completed by 19 nurses, 21 pediatric cardiologists and five allied health care professionals.

TABLE 1
Patient characteristics (n=23)*

Patient and parent responses to selected interview questions are shown in Table 2. While the majority of patients demonstrated at least a basic knowledge and comprehension of their heart conditions (n=17 [74%]), there was an evident gap of knowledge, with only 36% showing a clear understanding of the implications and changes associated with their future transition to adult care. A total of 43% of patients expressed a desire for more information about their heart condition.

TABLE 2
Patient and parent responses to semistructured interviews

Most parents (n=19 [86%]) were aware that their child would transition to adult care. Nearly one-half (n=9 [41%]) reported some concerns about transition and 50% felt that their child was ready for transition. Parents’ involvement in their child’s care was found to be extensive, with 95% of parents accompanying their child to medical appointments, 68% staying with them for the entire visit and 45% administering their medication. Parents were somewhat unclear about their role and the role of providers in preparing their child for transition, as demonstrated by the great variability in parents’ responses. However, when asked, 17 (81%) parents felt that the institution was preparing their child for transition.

Responses to selected items of the survey for health care providers are shown in Table 3. Providers felt that, currently, children were not sufficiently prepared for transition (n=20 [69%]). The majority of providers thought that children should start learning about transition between 13 and 16 years of age (n=32 [72%]). Physicians were found to be more involved in teaching about diagnosis and symptoms than nurses (86% versus 50%, respectively, P=0.05; and 90% versus 57%, respectively, P=0.04).

TABLE 3
Health care provider responses to transition survey (n=45)*

Associations between parent and patient responses to interview questions are shown in Table 4. An association was observed among a child’s knowledge, self-advocacy in the health care setting, and his or her understanding of the implications of transition. Children with more versus less or no knowledge about their heart condition were more likely to respond to providers’ questions themselves (88% versus 33%, respectively; P=0.03). They also demonstrated an understanding of the implications of transition to adult care (100% versus 7%, respectively; P<0.01). Children who reported needing more versus less or no information about their heart condition were more likely to let their parents answer providers’ questions (50% versus 8%, respectively; P=0.05).

TABLE 4
Associations between parent and patient responses to interview questions

Parents who reported having concerns about transition were more likely than those without concerns to answer providers’ questions for their child (57% versus 27%, respectively; P=0.03). They were also more likely to report not thinking that the institution’s role was to educate their children about their heart condition and encourage their child to be self-advocating (83% versus 43%, respectively; P=0.03) but had children who were more likely to report needing more information about their care (57% versus 20%; P=0.05). In contrast, parents who reported that their children were ready to take responsibility for their care, versus those who did not, were more likely to report letting their child answer providers’ questions for themselves (55% versus 11%, respectively; P=0.04) and report discussing their child’s heart condition only in medically relevant situations (64% versus 22%, respectively; P=0.04), rather than making it a dominant topic in their child’s life.

As shown in Table 5, providers who reported that the cardiac program was currently not adequately preparing children for transition felt that the lack of a formal transition program was an important problem (90%). Compared with physicians, nurses were more likely to see parental involvement in care activities as a significant obstacle to successful preparation for transition (37% versus 5%, respectively; P=0.02).

TABLE 5
Associations among responses to survey for health care providers

DISCUSSION

Currently, children born with CHD have a rate of survival and functional health status that was not experienced in the past. The need for their transition to adult care has posed numerous challenges for pediatric health care providers. By providing insight from the perspectives of key stakeholders in the transition process – patients, parents and providers – the present study identified areas of concern and provided an orientation for which to direct future endeavours in transition for the pediatric CHD clinic.

Patients who were more knowledgeable about their heart condition were more confident about their ability to care for themselves and tended to navigate the health care system independently from their parents. Parents who took responsibility for all or most of their child’s care activities appeared to impede development of confidence and independence by not allowing their children the opportunity to take an active role in their own care. The pediatric cardiologists may be enabling this type of parental involvement because they do not feel as though parents are obstacles to transition preparation, while nurses reported that parents impede the process. Alternatively, the child may lack the confidence to be self-advocating about their health and thus, parents feel obligated to take over certain aspects of care. The delegation of explicit responsibilities and a clear definition of roles for each participant are needed.

Providing patients with complete and accurate information about their diagnosis and its implications for their physical, sexual, emotional and mental health translates into confidence in the health care setting (21). Patients who were able to explain their diagnosis in both lay and medical terms appeared to be more confident. They communicated directly with providers instead of using their parents as a proxy, and were self-assured in their ability to take care of themselves. Patients who were unable to describe their diagnosis and its health implications did not exhibit this confidence, and often relied on their parents to communicate their needs to providers. There is a demonstrable need for consistent and thorough developmentally appropriate education for patients with CHD. Ideally, this education should begin as early as possible.

Parental involvement was found to influence a child’s ability to take responsibility for his or her own health care. Parents who assumed responsibility for most or all aspects of their child’s care had children who were unsure of their diagnosis and did not communicate directly with their providers. The child’s parents were also less likely to support and encourage independence, and often took over aspects of care that would be appropriate for a young adult to do for him- or herself (eg, medication administration). In contrast, parents of children who were generally confident and knowledgeable about their child’s diagnosis tended to encourage their child’s independence in the health care setting by letting them see providers alone and encouraging them to take an active role in their care. This observation contradicts some of the literature that does not implicate parents as barriers to transition (20); however, each disease group has unique barriers to successful transition preparation. Increased condition complexity has been associated with more successful transition (12,22) and therefore, a disease-specific approach that recognizes these unique barriers is necessary when considering transition preparation for the young adult.

Physicians in pediatric specialties train intensively in a discipline that embraces parental involvement. They also view patients in the context of a family structure (18). The amount of parental involvement may be unduly influenced by the practice of family-centred care because physicians were less likely to view parents as barriers to successful transition preparation. Family-centred care encourages parents to take an active role in their child’s care. However, at the time of transition, care in the pediatric setting must adapt to accommodate the presence of an additional adult (the patient), who needs to be treated independently of the family structure. While the literature advocates for a strong parent-provider relationship (17), a patient-provider relationship is also appropriate. A patient who is able to establish a relationship with his or her physician in the pediatric setting will have more confidence to do the same with a new adult provider. Both the pediatric physician and the patient need to strive for this. Devoting a portion of the visit to seeing the patient without his or her parents present is a gentle push that obliges the young adult to be a self-advocate of his or her health and also encourages the parent to begin playing a lesser role in his or her child’s care. It is also an opportune time to teach about diagnoses and discuss the imperative of regular care.

Parents and providers have varying expectations as to what responsibilities should be undertaken by whom during transition preparation (23). There is no clear pattern that would suggest that roles are defined for parents, physicians, nurses and allied health professionals. The variation in responses highlights the need for explicit role assignments for each participant (19) to tend to all the preparation needs of transition. Once these roles are filled, expectations of the young adult can be defined and a comprehensive approach can be adopted for transition preparation. Such an approach, while focusing on a family’s needs (22,24), would just as importantly focus on the individual patient’s needs (13).

Limitations

The present study is limited by its sample because only eligible patients who had time to participate were enrolled. This excluded a number of eligible participants whose participation was unfeasible from a time perspective. In addition, the study is somewhat limited by its small sample size. However, the scope of the investigation has provided a relevant depiction of the needs of transitioning patients. By identifying critical areas for intervention by the pediatric institution, the present study has provided a starting point for transition preparation endeavours in the pediatric CHD clinic.

CONCLUSIONS

There is a demonstrated need for a formalized, systematic approach to transition preparation for adolescents with CHD, and providers in the pediatric setting must take responsibility of this task. Health care providers need to explicitly define their roles in preparing patients for transition. Special focus should be given to consistent, thorough and comprehensive patient education, mitigation and redefinition of the parent’s role in the young adult’s care, and agreement among health care providers to ensure that these goals are achieved. A concerted effort must be made to implement a formalized transition process as part of the regular routine of the outpatient clinic visit. This will ensure that young adults with CHD are given the resources and support required to take complete responsibility for their health.

Footnotes

FUNDING: This study was supported, in part, by the CIBC World Markets Children’s Miracle Foundation Chair in Child Health Research.

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