Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York.
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ABSTRACT:
SUBMITTER: Gaydos LM
PROVIDER: S-EPMC9109153 | biostudies-literature | 2020 Aug
REPOSITORIES: biostudies-literature
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Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York.
Gaydos Laura M LM Sommerhalter Kristin K Raskind-Hood Cheryl C Fapo Olushola O Lui George G Hsu Daphne D Van Zutphen Alissa A Glidewell Jill J Farr Sherry S Rodriguez Fred H FH Hoffman Trenton T Book Wendy W
Pediatric cardiology 20200604 6
With increasing survival trends for children and adolescents with congenital heart defects (CHD), there is a growing need to focus on transition from pediatric to adult specialty cardiac care. To better understand parental perspectives on the transition process, a survey was distributed to 451 parents of adolescents with CHD who had recent contact with the healthcare system in Georgia (GA) and New York (NY). Among respondents, 90.7% reported excellent, very good or good health-related quality of ...[more]
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Project description:BackgroundMany individuals with congenital heart defects (CHDs) discontinue cardiac care in adolescence, putting them at risk of adverse health outcomes. Because geographic barriers may contribute to cessation of care, we sought to characterize geographic access to comprehensive cardiac care among adolescents with CHDs.MethodsUsing a population-based, 11-county surveillance system of CHDs in New York, we characterized proximity to the nearest pediatric cardiac surgical care center among adolescents aged 11 to 19 years with CHDs. Residential addresses were extracted from surveillance records documenting 2008 to 2010 healthcare encounters. Addresses were geocoded using ArcGIS and the New York State Street and Address Maintenance Program, a statewide address point database. One-way drive and public transit time from residence to nearest center were calculated using R packages gmapsdistance and rgeos with the Google Maps Distance Matrix application programming interface. A marginal model was constructed to identify predictors associated with one-way travel time.ResultsWe identified 2522 adolescents with 3058 corresponding residential addresses and 12 pediatric cardiac surgical care centers. The median drive time from residence to nearest center was 18.3 min, and drive time was 30 min or less for 2475 (80.9%) addresses. Predicted drive time was longest for rural western addresses in high poverty census tracts (68.7 min). Public transit was available for most residences in urban areas but for few in rural areas.ConclusionWe identified areas with geographic barriers to surgical care. Future research is needed to determine how these barriers influence continuity of care among adolescents with CHDs. Birth Defects Research 109:1494-1503, 2017.© 2017 Wiley Periodicals, Inc.
| S-EPMC6025891 | biostudies-literature
Project description:PurposeCongenital heart disease (CHD) is one of the most common congenital anomalies in children. Children with major CHD are at risk for developing endocarditis. Acute endocarditis may be life threatening and lead to heart failure. The purpose of this study was to explore parental perceptions and experiences of an early oral health promotion intervention (OHPI) targeting children with major CHD at risk for developing endocarditis later in life, and use this information to examine intervention feasibility.MethodsNine parents (three fathers and six mothers) participating in a one and a half year OHPI were purposefully selected for qualitative evaluation of intervention feasibility using semi-structured interviews. The interviews were analysed with an inductive content analysis method.ResultsThe analysis resulted in four main categories and 14 subcategories that describe parental perceptions and experiences of the OHPI. The four main categories were timing of first intervention contact, effortlessness of intervention process, individuality of support, and relevancy of support.ConclusionParents of children with CHD perceived the OHPI as important and feasible to be implemented in daily life in children with systemic diseases overall. Further studies on timing of first contact and use of additional Web-based support are needed.
| S-EPMC9116251 | biostudies-literature
Project description:Clinical genetic testing for specific isolated congenital heart defects (CHD) is becoming standard of care in pediatric cardiology practice. Both genetic knowledge and attitudes toward genetic testing are associated with an increased utilization of genetic testing, but these factors have not been evaluated in parents of children with CHD. We mailed a survey to measure the demographics, genetic knowledge, and attitudes towards genetic testing of parents of children with CHD who previously consented to participate in a separate research study of the genetic etiology of left ventricular outflow tract malformations (LVOT). Of the 378 eligible families, 190 (50%) returned surveys with both parents completing surveys in 97 (51%) families, resulting in 287 participants. Genetic knowledge was assessed on an adapted measure on which the mean percent correct was 73.8%. Educational attainment and household income were directly and significantly associated with genetic knowledge (P?<?0.001). Attitudes about the health effects of genetic testing were favorable with at least 57% agreeing that genetic testing would be used for managing health care and finding cures for disease. Conversely, a minority of participants found it likely that genetic testing would be used for insurance (up to 39.9%), employment (15.8%), or racial/social discrimination (up to 11.2%). Parents of younger children were less likely to endorse employment or racial/social discrimination. Genetic knowledge was not correlated with specific attitudes. Among parents of children with CHD, genetic knowledge was directly associated with household income and education, but additional research is necessary to determine what factors influence attitudes towards genetic testing.
| S-EPMC4236279 | biostudies-literature
Project description:Parents of children with critical congenital heart defects (PCCHDs) may be at high risk for mental health morbidity; however, the literature is not well characterized. Given that compromised parental mental health can lead to long-term cognitive, health-related, and behavioral problems in children, a systematic review of this literature could provide informed recommendations for continued research and enhance the care of families of children living with critical congenital heart defects.We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines that resulted in 30 studies on the mental health of PCCHDs. The literature revealed that PCCHDs are at an elevated risk for psychological problems, particularly in the immediate weeks and months following cardiac surgery. Up to 30% of PCCHDs have symptoms consistent with a diagnosis of posttraumatic stress disorder, with over 80% presenting with clinically significant symptoms of trauma; 25% to 50% of PCCHDs reported clinically elevated symptoms of depression and/or anxiety, and 30% to 80% reported experiencing severe psychological distress. There was high variability in measurements used to assess study outcomes, methodological quality, and sociocultural composition of the parents included in the studies.There is an urgent need for additional research on the severity, course, persistence, and moderators of these mental health problems over time, and for the development and testing of screening approaches and interventions that can be feasibly delivered in the context of ongoing pediatric cardiac care.
| S-EPMC5523775 | biostudies-other
Project description:Background We sought to characterize health care usage for adolescents with congenital heart defects (CHDs) using population-based multisite surveillance data. Methods and Results Adolescents aged 11 to 18 years with ≥1 CHD-related diagnosis code and residing in 5 US sites were identified in clinical and administrative data sources for the years 2011 to 2013. Sites linked data on all inpatient, emergency department (ED), and outpatient visits. Multivariable log-binomial regression models including age, sex, unweighted Charlson comorbidity index, CHD severity, cardiology visits, and insurance status, were used to identify associations with inpatient, ED, and outpatient visits. Of 9626 eligible adolescents, 26.4% (n=2543) had severe CHDs and 21.4% had Charlson comorbidity index >0. At least 1 inpatient, ED, or outpatient visit was reported for 21%, 25%, and 96% of cases, respectively. Cardiology visits, cardiac imaging, cardiac procedures, and vascular procedures were reported for 38%, 73%, 10%, and 5% of cases, respectively. Inpatient, ED, and outpatient visits were consistently higher for adolescents with severe CHDs compared with nonsevere CHDs. Adolescents with severe and nonsevere CHDs had higher health care usage compared with the 2011 to 2013 general adolescent US population. Adolescents with severe CHDs versus nonsevere CHDs were twice as likely to have at least 1 inpatient visit when Charlson comorbidity index was low (Charlson comorbidity index =0). Adolescents with CHDs and public insurance, compared with private insurance, were more likely to have inpatient (adjusted prevalence ratio, 1.5 [95% CI, 1.3-1.7]) and ED (adjusted prevalence ratio, 1.6 [95% CI, 1.4-1.7]) visits. Conclusions High resource usage by adolescents with CHDs indicates a substantial burden of disease, especially with public insurance, severe CHDs, and more comorbidities.
| S-EPMC9683649 | biostudies-literature
Project description:BackgroundImproved treatment of congenital heart defects (CHDs) has increased survival of persons with CHDs; however, no U.S. population-based systems exist to assess prevalence, healthcare utilization, or longer-term outcomes among adolescents and adults with CHDs.MethodsNovel approaches identified individuals aged 11-64 years who received healthcare with ICD-9-CM codes for CHDs at three sites: Emory University in Atlanta, Georgia (EU), Massachusetts Department of Public Health (MA), New York State Department of Health (NY) between January 1, 2008 (2009 for MA) and December 31, 2010. Case-finding sources included outpatient clinics; Medicaid and other claims data; and hospital inpatient, outpatient, and emergency visit data. Supplemental information came from state vital records (EU, MA), and birth defects registries (EU, NY). Demographics and diagnostic and procedural codes were linked, de-duplicated, and shared in a de-identified dataset. Cases were categorized into one of five mutually exclusive CHD severity groups; non-cardiac comorbidity codes were grouped into broad categories.Results73,112 individuals with CHD codes in healthcare encounters were identified. Primary data source type varied: clinics (EU, NY for adolescents), claims (MA), hospital (NY for adults). There was a high rate of missing data for some variables and data varied in format and quality. Some diagnostic codes had poor specificity for CHD ascertainment.ConclusionsTo our knowledge, this is the first population-based, multi-site CHD surveillance among adolescents and adults in the U.S. Identification of people living with CHDs through healthcare encounters using multiple data sources was feasible, though data quality varied and linkage/de-duplication was labor-intensive.
| S-EPMC6701175 | biostudies-literature
Project description:BackgroundWomen with congenital heart defects (CHDs) experiencing pregnancies require specialized delivery care and extensive monitoring that may not be available at all birthing hospitals. In this study, we examined proximity to, and delivery at, a hospital with an appropriate level of perinatal care for pregnant women with CHDs and evaluated predictors of high travel distance to appropriate care. Appropriate care was defined as Level 3 perinatal hospitals and Regional Perinatal Centers (RPCs).MethodsInpatient delivery records for women with CHD in New York State (NYS) between 2008 and 2013 were obtained. Driving time and transit time were calculated between the pregnant woman's residence and the actual delivery hospital as well as the closest Level 3 or RPC hospital using Geographic Information Systems (GIS). Linear and logistic regression models evaluated predictors of high distance to, and utilization of, appropriate delivery care respectively.ResultsFrom 2008 to 2013, there were 909 deliveries in a NYS hospital by women with CHDs. Approximately 75% of women delivered at a Level 3 or RPC hospital. Younger women, those who reside in rural and smaller urban areas, and those who are non-Hispanic White had a greater drive time to an appropriate care facility. After adjustment for geographic differences, racial/ethnic minorities and poor women were less likely to deliver at an appropriate delivery care center.ConclusionsAlthough most women with CHDs in NYS receive appropriate delivery care, there are some geographic and socio-demographic differences that require attention to ensure equitable access.
| S-EPMC7268637 | biostudies-literature
Project description:BackgroundTransition programs are pivotal in ensuring successful transition to adulthood and transfer to adult care for adolescents with chronic conditions. Healthcare providers must therefore support adolescents in increasing their empowerment to gain active participation in health and care. The Stepstones transition program is based on a person-centred care approach and has been evaluated in a randomized controlled trial. However, the extent to which the person-centred care approach was implemented needs further exploration.ObjectiveTo evaluate how a person-centred care approach was implemented based on a documentation analysis of the Stepstones transition program for adolescents with congenital heart disease.DesignA deductive qualitative design employing analysis of the documentation used in the Stepstones transition program.SettingsThe documentation derives from the consultations in the two interventions centres in the Stepstones randomized controlled trial. The trial was conducted between 2017 and 2021. Data sources included in this study were: The adolescents' written narratives, documentation of the person-centred conversations, and goalsetting in the transition plans.ParticipantsDocumentation for adolescents with congenital heart disease, randomized to the intervention group (n = 59) at the two intervention centres was included.MethodsDirected content analysis was used to evaluate how person-centred care was described in the documentation. The analysis was based on the three cornerstones of person-centred care: initiating, establishing and safeguarding partnership, in this study between the adolescent and the transition coordinator during the transition program. The data were deductively sorted into aspects of relevance for person-centred care and adolescent health. For the written narratives an inductive analysis was thereafter undertaken.ResultsA partnership between the transition coordinator and the adolescent was initiated through the adolescents' written narrative and established using a psychosocial interview guide. This outlined a spectrum of aspects important to person-centred and adolescent-oriented approach, such as resources, risks/obstacles, and needs. The goalsetting process describes goals commonly agreed upon and how to accomplish them. A solid foundation of self-awareness regarding personal capacities and learning needs contributed to the development of knowledge, understanding, and fostered independence to various degrees.ConclusionsThe Stepstones transition program for adolescents with congenital heart disease implemented several person-centred components, such as eliciting narratives, collaborative goal setting, and tailoring support needs. The documentation had limitations in fully reflecting the person-centred practices employed, highlighting opportunities for improvement in person-centred documentation.Tweetable abstract"The study delves into the implementation of person-centred care in the Stepstones transition program for adolescents with congenital heart disease, revealing strengths and areas for improvement in documentation."
| S-EPMC11875196 | biostudies-literature
Project description:ImportanceFamily-centered care recognizes families as central to child health and well-being and prioritizes clinician collaboration with families to ensure optimal pediatric care and outcomes. Clinician interpersonal sensitivity and communication skills are key to this approach.ObjectiveTo examine perceptions of and factors associated with family-centered care among clinicians working in pediatric and congenital heart care.Design, setting, and participantsIn this cross-sectional study, participants from diverse clinical disciplines (pediatric cardiology, cardiothoracic surgery, nursing, anesthesia, neonatology, intensive care, psychology, and others), completed an online survey between June 2020 and February 2021. Participants included physicians, surgeons, nurses, and allied and mental health professionals at an Australian quaternary pediatric hospital network. Statistical analysis was performed from August 2022 to June 2023.Main outcomes and measuresFamily-centered care across 4 domains (showing interpersonal sensitivity, treating people respectfully, providing general information, and communicating specific information) was measured using the validated Measure of Processes of Care for Service Providers. Clinician burnout (emotional exhaustion, depersonalization, and personal accomplishment), confidence responding to families' psychosocial needs, and psychological, clinical role, and sociodemographic factors were also assessed. Informed by theory, hierarchical linear regression was used to identify factors associated with family-centered care.ResultsThere were 212 clinicians (177 women [84.3%]; 153 nurses [72.2%], 32 physicians [15.1%], 22 allied and mental health professionals [10.4%], 5 surgeons [2.3%]; 170 [80.2%] aged 20-49 years) who participated (55% response rate). Of the 4 family-centered care domains, scores for treating people respectfully were highest and associated with greater clinician confidence responding to families' psychosocial needs (effect size [β], 0.59 [95% CI, 0.46 to 0.72]; P < .001), lower depersonalization (β, 0.04 [95% CI, -0.07 to -0.01]; P = .02), and a greater sense of personal accomplishment at work (β, 0.02 [95% CI, 0.01 to 0.04]; P = 0.04). Greater interpersonal sensitivity was associated with greater confidence responding to families' psychosocial needs (β, 0.80 [95% CI, 0.62 to 0.97]; P < .001), a greater sense of personal accomplishment at work (β, 0.03 [95% CI, 0.01 to 0.05]; P = .04), and lower use of approach-based coping, such as problem-solving (β, 0.37 [95% CI, -0.71 to -0.02]; P = .04).Conclusions and relevanceIn this cross-sectional study, burnout and confidence responding to families' psychosocial needs were associated with clinicians' perceptions of family-centered care. These findings suggest that targeted interventions to address these factors may benefit clinicians and also potentially strengthen the practice of family-centered care in pediatric and congenital heart settings.
| S-EPMC11250268 | biostudies-literature
Project description:The majority of patients born with congenital heart disease (CHD) need lifelong surveillance with serial clinical attendance and examinations. However, loss of follow-up (namely no documented follow-up for 3 years or more) is a recognised common problem since it is often related to remarkable worsening in the health of CHD patients with increased morbidity and mortality. Transitioning from paediatric to adult care has proven to be the most vulnerable point in the care of these subjects. As such, a systematic review was carried out to ask the following questions: What is the percentage of loss of follow-up worldwide? Are there regional fluctuations in the percentage? Is there a link between loss of follow-up and the complexity of CHD? What strategies should be employed to lower the risk of discontinuity in care? The most recent worldwide averaged loss of follow-up is 26.1%, with significant fluctuations across continents and countries. This percentage is even higher (31.9%) when one includes all untraceable patients, presuming that they are not having any cardiac follow-up. The highest discontinuity of care was reported in the USA and in patients with simple CHD. Planning the rules of transition seems to be one of the most reliable tools to minimise the number of CHD patients who are lost in transition. Recalling patients, with general practitioners who are crucial in readdressing half of the lost to follow-up CHD patients to adult CHD specialists, and a good relationship between paediatric cardiologists and the adult CHD team are two other valuable strategies in aiding successful transition.
| S-EPMC10047586 | biostudies-literature