Abstract
Background:
Parents of pediatric heart transplant (HTx) recipients have a unique perspective on challenges associated with the transition into adult care networks. We sought to assess parental perceptions of challenges pediatric HTx recipients face daily and parental concerns around the transition from pediatric care networks.
Methods:
A 15-item online survey was developed in partnership with parent-stakeholders and administered to parents of pediatric HTx recipients in September 2023. Closed and open-ended questions assessed 1) the patients’ diagnosis, age at diagnosis, and age at transplant, 2) parents’ daily concerns about their child’s well-being, 3) parents’ overall concerns about their child’s well-being as they transition into adulthood, 4) parents’ perceptions of their child’s quality-of-life (QoL) and health, and 5) parents’ demographic characteristics.
Results:
86 parents completed the survey. On a scale of 1 (worst) to 10 (best), 75% of parents rated their child’s overall QoL at 8 or higher and 76% rated their child’s health-related QoL at 8 or higher. Parents’ daily concerns about their child’s well-being included: infectious diseases, health behaviors and care management, transplant related concerns, socialization and education, mental health, and care coordination. Concerns related to the transition into adulthood included: health behaviors and self-management, life satisfaction, finances, family, transplant related concerns, and care coordination.
Conclusions:
Although parents of pediatric HTx recipients reported mostly positive QoL outcomes, they have concerns related to care management, life satisfaction, and healthcare access as their children transition into adulthood. Comprehensive transition-specific interventions and guidelines are needed to support families during this high-risk period.
INTRODUCTION
Advancements over the last two decades in the field of pediatric heart transplantation have increased the life expectancy of recipients, meaning more of these patients will survive into adulthood.1 However, the risk of graft loss and mortality for pediatric heart transplant (HTx) recipients peaks during young adulthood (ages 17–29).2 This increased risk has been associated with poor treatment adherence and loss-to-follow up as pediatric recipients transition into adulthood and out of pediatric care networks.3–5
Transitions from pediatric to adult care systems require patients to have knowledge about their health needs, self-efficacy to manage their own health, and self-management skills6,7 Recent work around transition of care for pediatric patients with congenital heart disease has found that interventions aimed at increasing patients’ knowledge and self-efficacy around the transition period were associated with better quality-of-life (QoL) outcomes.7 A recent scientific statement published by the American Heart Association reported that interventions that consider the impact of social determinants of health (e.g., socioeconomic status) and psychosocial factors (e.g., identity formation) help prepare pediatric patients for their transition into adult care.6 This statement also noted the importance of addressing challenges around communication between patients, families and care teams and insurance reimbursement for transition-related care through a family-centered approach.6 Although these studies were designed for pediatric congenital heart disease patients, the concepts and methods can be applied to pediatric HTx recipients who experience comparable challenges during the transition into adult care networks.
One approach to optimizing the transition from pediatric to adult care networks is the implementation of a transition clinic.3 This model has been successfully tested in three nonrandomized studies; all three of which noted improved transplant outcomes among those participating in the transition clinic, including lower rates of nonadherence, graft failure, and death.8–10 These studies exemplify the impact of providing families with a physical location dedicated to connecting recipients with their new adult care teams prior to transition, but none of these studies assessed the impact of the transition clinic on patients’ perceived readiness to transition, self-efficacy, mental health or well-being.
Educational interventions have also been studied as an approach to improve the transition process and outcomes for pediatric HTx recipients. A prospective, multi-center, randomized controlled trial conducted from 2014 to 2016 focused on enhancing care support systems and improving young adult pediatric HTx recipients’ knowledge, self-management, and self-advocacy skills through a multifaceted longitudinal educational intervention called Transitioning into Adult Care (TRANSIT).11 Although the study demonstrated feasibility of the intervention, there were no significant differences in treatment adherence or self-management outcomes (i.e., appointment keeping) between the intervention group and the control group who received standard care.12 Another study conducted in 2019 assessed whether a structured educational transition program improved patients’ knowledge and adherence, as well as patient and parental perceptions of the patients’ readiness to transition.13 Authors found that this intervention successfully improved patient knowledge and adherence outcomes, but there were no significant differences in patient or parental perceptions of transition readiness.13
The sustained support and engagement of parents before, during, and after the transition into adult care networks is vital to ensure a successful transition of care.3,6 Parents of pediatric HTx recipients are typically the primary coordinators of their child’s care both inside and outside of the healthcare setting.3 This unique perspective enables parents to provide insights on environmental and psychosocial factors that might impact their child’s well-being and identify opportunities for intervention during this high-risk period. Previous qualitative research on the experiences of parents of pediatric HTx recipients identified that this population has concerns related to their child’s condition, their child’s QoL, and their responsibility to manage their child’s care.14–16 An exploratory mixed-methods study found that most parents of pediatric HTx recipients reported that their child’s QoL had improved since their transplant, but voiced concerns related to their child’s physical, emotional, and financial well-being as they mature into adults.16 Although these findings highlight the difficulties associated with caring for a pediatric HTx recipient, they were conducted over fifteen years ago.14–16 At this time, there is a paucity of recent qualitative data assessing parental concerns related to pediatric HTx recipients’ transition into adult care networks.
In this survey of parents of pediatric HTx recipients, we examine parental perceptions of their child’s QoL, their daily concerns around their child’s well-being, and their concerns related to their child’s transition into adulthood and away from pediatric care networks.
METHODS
Survey Design
Experts in pediatric cardiology and transplant research partnered with patient and caregiver advocacy group, Transplant Families, to design and iteratively refine a survey with both closed-ended and open-ended response questions. The 15-item survey (Supplementary file) measured 5 domains: 1) parents’ demographic characteristics (race/ethnicity, state of residence, and zip code), 2) the pediatric patients’ diagnosis, age at diagnosis, and age at transplant, 3) parents’ daily concerns about their child’s well-being, 4) parents’ overall concerns about their child’s well-being as they transition into adulthood, and 5) parents’ perceptions of their child’s QoL and health. We adapted the Quality of My Life Questionnaire to assess parents’ perceptions of their child’s QoL.17 This 3-item validated measure of self-reported QoL was selected for its brevity to ensure a sufficient response rate from this group of busy individuals. This study was reviewed and approved by the New York University Langone Health Institutional Review Board (s23–00976).
Survey Administration
Eligible participants were 18 years of age or older and had a child who underwent heart transplantation when they were under 18 years of age. Screener questions at the start of the survey reduced measurement error by ensuring that only eligible respondents participated. Survey links were distributed by Transplant Families to their network of pediatric HTx recipient families in September 2023 on Facebook, Twitter, Instagram and LinkedIn. Respondents completed the web-based survey using REDCap.18,19 Respondents were not given incentives for their participation.
Statistical Analysis
Quantitative analyses were conducted using Stata/MP 17.0 for Linux (College Station, Texas). Qualitative analyses were conducted using NVivo version 14 (Denver, Colorado). If parents reported that their child received multiple transplants, the first age of diagnosis and transplant was used for analysis. If parents reported an age in months, the age was rounded down to the nearest year. We categorized states of residence into Northeast, Midwest, Southeast, and Western regions of the United States.
Analytical Approach
Descriptive statistics (i.e., frequencies, percentages, and medians) were calculated. Two co-authors (KK and MD) used thematic analysis techniques to identify qualitative themes from open-ended responses assessing parents’ daily and future concerns about their child living with a heart transplant.20 The first coder (KK) inductively categorized the open-ended response questions and met with the second coder (MD) to reach a consensus. The use of two coders ensures greater validity and reliability of results and decreases the potential for measurement error.21 Themes are comprised of multiple concerns and some respondents listed concerns across multiple themes. Therefore, the percentages associated with each concern do not align with percentages associated with each theme.
RESULTS
Sample Population
107 people clicked on the survey link. 17 respondents did not complete any questions and were removed from analysis. 90 respondents completed the screener questions, but 4 were deemed ineligible to participate and were removed from the analysis. The final analytic sample included 86 respondents (Figure 1). Due to the social media-based recruitment approach, the number of potential respondents was unknown.
Figure 1.
Survey Respondent Recruitment Flow Chart
Parents’ demographic characteristics
Respondents identified primarily as White (68%), multiple races or ethnicities (15%), and Hispanic (7%). Respondents resided in the Southeast (26%), Midwest (25%), West (22%), and Northeast (13%) regions of the United States, while 14% of respondents resided outside of the United States. (Table 1)
Table 1.
Sample Population Characteristics Reported by Parents of Pediatric Heart Transplant Recipients
| Characteristic | Frequency (%) | Missing | |
|---|---|---|---|
| Total | 86 | ||
| Race and Ethnicity | 14 | ||
| American Indian or Alaska Native | 0 (0) | ||
| Asian | 3 (4) | ||
| Black or African American | 2 (3) | ||
| Hispanic or Latino/a/x | 5 (7) | ||
| Native Hawaiian or Other Pacific Islander | 1 (1) | ||
| White | 49 (68) | ||
| Other | 1 (1) | ||
| More than 1 race or ethnicity | 11 (15) | ||
| U.S. Region | 14 | ||
| Northeast | 9 (13) | ||
| Midwest | 18 (25) | ||
| Southeast | 19 (26) | ||
| West | 16 (22) | ||
| Outside the U.S. | 10 (14) | ||
| Patient Diagnosis | 3 | ||
| Congenital Heart Disease | 37 (45) | ||
| Cardiomyopathy | 38 (46) | ||
| Other (refractory life-threatening arrhythmia, Cancer, etc.) | 8 (10) | ||
Note: Percentages rounded to the nearest integer.
Pediatric patients’ diagnosis, age at diagnosis, and age at transplant
Parents reported the following primary diagnoses as indications for heart transplant: congenital heart disease (45%), cardiomyopathy (46%), and other (refractory life-threatening arrhythmia, Cancer, etc.) (10%) (Table 1). The median and most reported age at cardiac diagnosis was <1 year old (54.9%), followed by diagnosis in utero (11%) (Table 2). The most reported age at transplant was <1 year old (46%) and the median age at transplant was one year old (7%) (Table 2). Five parents reported that their child received multiple transplants, and one parent reported that their child had died after receiving a transplant.
Table 2.
Pediatric Heart Transplant Recipients’ Ages at Diagnosis and Transplant
| Age | Age at Diagnosis frequency (%) | Age at Transplant frequency (%) |
|---|---|---|
| In utero | 9 (11) | n/a |
| <1 | 45 (55) | 38 (46) |
| 1 | 4 (5) | 6 (7) |
| 2 | 2 (2) | 3 (4) |
| 3 | 4 (5) | 5 (6) |
| 4 | 1 (1) | 3 (4) |
| 5 | 4 (5) | 6 (7) |
| 6 | 3 (4) | 2 (2) |
| 7 | 1 (1) | 1 (1) |
| 8 | 0 (0) | 4 (5) |
| 9 | 2 (2) | 0 (0) |
| 10 | 2 (2) | 2 (2) |
| 11 | 1 (1) | 2 (2) |
| 12 | 0 (0) | 2 (2) |
| 13 | 2 (2) | 2 (2) |
| 14 | 0 (0) | 2 (2) |
| 15 | 1 (1) | 3 (4) |
| 16 | 0 (0) | 1 (1) |
| 17 | 1 (1) | 0 (0) |
| 18 | 0 (0) | 1 (1) |
| Total | 82 (100) | 83 (100) |
Note: Percentages rounded to the nearest integer. If parents reported more than 1 transplant the first age of diagnosis and transplant was used for the table. If parents reported an age between whole numbers the age was rounded down to the nearest whole number (I.e., 18 months = 1 year old).
Parents’ daily concerns about their child’s QoL
Parents’ (n=63) daily concerns around their child’s QoL fell into five themes: infectious diseases, health behaviors and care management, transplant related concerns, socialization and education, and mental health (Table 3).
Table 3.
Example Responses of Parents’ Daily Concerns for Their Children Who Received a Pediatric Heart Transplant
| Theme | Frequency (%) (n=63) | Example Response 1 | Example Response 2 |
|---|---|---|---|
| Infectious Diseases | 42 (66.7%) | Contagious diseases at school and in public settings | Getting sick with a suppressed immune system |
| Health Behaviors and Care Management | 30 (47.6%) | Good hygiene [and] persuasiveness of friends not knowing implications of decisions | Medications (all of them and on time) |
| Transplant related concerns | 23 (36.5 %) | The side effects of the medication… this impacts many things such as contagious diseases, need for sun protection, drinking lots of water, kidney damage | Rejection. Forever and always terrified that “the other shoe will drop” and we’ll be back on the transplant list |
| Socialization and Education | 6 (9.5%) | child absent [from school] most of the time also communication skills with others | the child’s ability to be accepted at school [and] feeling ‘normal’ |
| Mental health | 4 (6.4%) | Anxiety. They have a lot of day-to-day extra things that need to be done. | 3 heart surgeries, 2 transplants and numerous other procedures has taken a big toll on my daughter and my biggest day to day worries relate to her mental health and wellbeing |
Infectious Diseases
Parents reported daily concerns around their child being immunocompromised, including infectious diseases contracted at school (65%), and the risk of hospital readmission for opportunistic infections (3%).
Health Behaviors and Care Management
Parents reported daily concerns around their child’s ability to manage fluid intake (6%) and practice good hygiene (11%). They also reported concerns around their ability to help their children with care management (e.g., taking medications and attending medical appointments) (41%). One parent mentioned that they have concerns around care coordination since their child lives out of state (2%).
Transplant Related Concerns
Parents reported daily concerns related to the success of their child’s transplant including the risk of organ rejection (25%), the need for re-transplant (6%), shortened lifespans (2%), medication side effects (e.g., diabetes, effects on kidneys, being immunocompromised, and the need for sun protection) (6%), and transplant-related conditions such as cardiac allograft vasculopathy and post-transplantation lymphoproliferative disease (14%).
Socialization and Education
Parents reported daily concerns related to their child’s socialization (e.g., making friends, communicating with others, “feeling normal”, and being accepted at school) (10%). One parent mentioned daily concerns around their child falling behind in school and not receiving necessary learning accommodations (2%).
Mental Health
Parents reported daily concerns around their child’s mental health following their transplant (e.g., the “toll it takes” on their well-being, post-traumatic stress disorder, or anxiety) (6%).
Parents’ overall concerns about their child’s well-being as they transition into adulthood
Parents’ (n=63) overall concerns about their child’s well-being as they transition into adulthood fell into five themes: health behaviors and self-management, life satisfaction, finances, family, and transplant related concerns (Table 4).
Table 4.
Example Responses of Parents’ Concerns for Their Children Who Received a Pediatric Heart Transplant as They Transition to Adulthood
| Theme | Frequency (%) (n=63) | Example Response 1 | Example Response 2 |
|---|---|---|---|
| Health Behaviors and Self-Management | 35 (55.6%) | Assuming she lives a long life- I worry most of her care when my husband and I can no longer care for her | Making sure they are compliant with everything (meds, appointments, etc.) after they are living on their own |
| Life Satisfaction | 30 (47.6%) | Because of her combination of all her issues, she will likely never be fully independent | living their best life because as we know the transplant child life is not easy, they spend most of the time in hospital … could be affected in school, and dealing with others |
| Finances | 21 (33.3%) | Getting a job with insurance and a living wage | How will he pay for medication if he can’t get insurance due to his transplant |
| Family | 19 (30.2%) | Once I am gone, I hope she has someone that will be there to support her mentally, emotionally, and physically throughout her transplant experience | Her ability to have babies if she wants to without significant risk |
| Transplant related concerns | 17 (27.0%) | [My] biggest fear is how long this heart will last for her considering she received a transplant at 5 years of age. | cardiac allograft vasculopathy, rejection, needing another transplant, re-admissions for infections, second malignancies, shortened life span |
Health Behaviors and Self-Management
Parents reported transition-related concerns around their child’s ability to take over care management responsibilities (e.g., medication adherence, scheduling and attending appointments, and securing health insurance) (48%). They also reported concerns around their child’s ability to practice healthy behaviors on their own (e.g., managing fluid intake, practicing good hygiene, and abstaining from drugs and alcohol) (8%).
Life Satisfaction
Parents reported transition-related concerns around their child’s ability to live independently and enjoy a fulfilling life (41%), socialize with their peers (8%), and “grapple” with the mental and emotional impact of living with a heart transplant from a young age (10%). Many parents reported that they want their children to be able to “live their best life” (19%).
Finances
Parents reported transition-related concerns around their child’s ability to access affordable health services (e.g., providers and insurance) (27%), access medications (6%), and find a job (2%), especially one that offers insurance benefits. One parent mentioned concerns around their child’s ability to secure health insurance given their status as a transplant recipient (2%).
Family
Parents reported transition-related concerns around their child’s ability to find a partner that will support them mentally, emotionally, and physically (8%). Others were concerned that their children may not be able to have their own children as a result of their transplant (14%).
Transplant Related Concerns
Parents reported concerns related to their child’s ability to remain healthy (14%) and survive into adulthood (5%), the need for re-transplant (8%), and the health impacts of taking medication over a long period of time (5%).
Parents’ perceptions of their child’s QoL and health
On a scale from 1 (worst) to 10 (best), 75% of parents rated their child’s overall QoL at a score of 8 or higher and 76% rated their child’s health-related QoL at a score of 8 or higher (n=71) (Figure 2). 64% of parents reported that their child’s health is worse than their peers, 25% reported that their child’s health is the same, and 11% reported that their child’s health is better compared to their peers (n=72).
Figure 2.
Parental Perceptions of Pediatric Heart Transplant Recipients’ Quality-of-life (QoL) and Health-related QoL on a Scale from Worst (1) to Best (10)
Note: n=71
DISCUSSION
In our survey on parental perceptions and concerns for pediatric HTx recipients, we found that while 76% of parents rated their child’s health-related QoL at an 8 or higher (on a scale of 1–10), 64% reported that their child’s health was worse than that of their peers. Parents reported daily concerns around their child’s physical health and social well-being. Parents’ concerns around the transition to adulthood were primarily about their child’s ability to manage their own care needs, access and afford healthcare services, and enjoy a fulfilling, independent life.
Parental concerns related to their child’s social well-being are consistent with studies from the United States and Germany that found that pediatric HTx recipients tended to score lower than healthy populations in QoL domains related to psychosocial functioning.22,23 Daily concerns around physical health are supported by findings from a 2006 study reporting that parents of pediatric HTx recipients voiced concerns related to infection risk, medication side effects, and organ rejection.16 This study also reported similar themes around parents’ concerns for the future, including their child’s financial stability and care management.16 Many parents in our sample expressed concerns around their child’s ability to secure health insurance, start a family, grapple with the mental health impacts of living with a heart transplant, and live independently once they mature into young adults. This emphasizes the need for comprehensive support and educational resources that prepare pediatric HTx recipients and their families for the transition to adult care systems and, more generally, into adulthood.
Existing interventions designed to optimize the transition into adult care for pediatric HTx recipients have focused primarily on improving transplant knowledge and treatment adherence.9–13 Although these factors are critical to a successful transition of care, they do not encompass necessary life skills such as building social support networks, using healthy coping mechanisms, and building financial literacy. Future interventions should go beyond educating and towards empowering. Empowerment interventions implemented in a group-format have been found to improve self-efficacy and self-care management for persons living with chronic diseases.24 These interventions build patients’ 1) understanding of their role in their healthcare, 2) knowledge around engaging with healthcare providers, 3) self-management skills, and 4) external support systems.24 Empowerment-focused transition interventions for pediatric HTx recipients that connect patients with resources (i.e., financial advisors and peer support groups) and provide hands-on support through complex processes (i.e., creating retirement accounts, applying for jobs, communicating with healthcare providers, and cooking nutrient dense meals) should be evaluated in future studies.
Future interventions should also consider how to best support recipients’ parents as they abdicate care responsibilities to their growing child. Parents in our study reported that they have concerns around who will take care of their children once they are no longer around. These results align with previous findings that parents of children with chronic illnesses, including pediatric transplant recipients, experience higher levels of parenting stress.25,26 Addressing parental concerns around the transition into adult care networks is beneficial to both the parent and child, as parental distress and functioning has been associated with health outcomes and self-management behaviors for children with chronic conditions.26,27 Mindfulness-based stress reduction is a promising strategy for reducing stress in caregivers of transplant recipients and should be evaluated with parents of pediatric HTx recipients.28
The Organ Procurement and Transplantation Network/United Network For Organ Sharing Pediatric Transplantation Committee’s guidelines to aid transplant centers in facilitating an effective transition for pediatric transplant recipients include 1) written out transition plans, 2) collaboration with recipients’ families to encourage patients’ independence and self-responsibility, 3) and coordination with adult care providers before the transfer.4 Additionally, the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition collaborated with the American Transplant Society in 2021 to publish guidelines for a multidisciplinary transition approach for patients with pediatric-onset liver disease and transplantation.29 These guidelines, modeled after the Six Core Elements of Health Care Transition ™, included transition policy, tracking and monitoring, transition readiness, transition planning, transfer of care, and transfer completion.29 However, it is unknown how many transplant centers have implemented these guidelines and to what extent they improve transition-related pediatric transplant outcomes.30 Furthermore, these guidelines were not developed to suit transition needs specific to pediatric HTx recipients. Organizations like the Pediatric Heart Transplant Society and the International Society for Heart and Lung Transplantation have initiated efforts to create standard transition guidelines and support materials specific to pediatric HTx recipients. Our survey results can be used to inform these efforts, especially in regard to improving parental perceptions of their child’s readiness to transition.
These results must be framed within the context of their limitations. Our sample population was small, the study did not assess whether patients were still alive, and patients’ transplant date(s) were not ascertained. This prevented us from assessing subgroup differences and limits the generalizability of our results. Furthermore, this study did not assess whether patients were still in contact with their care teams or if they had been lost to follow up. It is also possible that patients lost to follow-up were underrepresented in this sample of highly engaged parents who are active on pediatric HTx social media pages. Future studies should attempt to recruit families who have been lost to follow-up to learn more about their experiences with the transition from pediatric to adult care networks. Additionally, the use of social media for recruitment limited our ability to ascertain a response rate or assess the impact of selection bias. Despite these limitations, this multi-regional survey allowed us to assess parental perceptions and concerns about their child’s QoL through adapted evidence-based measures and rich qualitative data.
Parents of pediatric HTx recipients have concerns around their child’s transition to adulthood, especially around care management and life satisfaction. These concerns necessitate additional research to identify 1) which recipients are most at risk for experiencing adverse outcomes, 2) guidelines that can help transplant centers coordinate successful transitions of care, and 3) interventions that provide comprehensive support to patients and their families during this high-risk period.
Supplementary Material
Acknowledgements/Funding:
This work was supported by grant number K24AI144954 (Segev) from the National Institute of Allergy and Infectious Diseases (NIAID).
Abbreviations:
- HTx
heart transplant
- QoL
quality-of-life
Footnotes
Disclosures: MKC serves on the Medical Advisory Council for Transplant Families and MV serves on the Board of Directors for Transplant Families.
Description of Supporting Information: The supplementary file includes the survey items as they were displayed to study participants.
Data statement:
The data that support the findings of this study are available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.