Knowledge of Life-Long Cardiac Care by Adolescents and Young Adults with Congenital Heart Disease

Fernandes, Susan M.; Verstappen, Amy; Clair, Mathieu; Rummell, Mary; Barber, Deena; Ackerman, Kathleen; Dummer, Kirsten; Mares, Joseph C.; Cannobio, Mary M.; Reardon, L.; Long, Jin; Crumb, Stephen R.; Bhatt, Ami B.; Takahashi, Masato; Khairy, Paul; Williams, Roberta G.; Landzberg, Michael J.; Moe, Tabitha G.; Pearson, D

doi:10.1007/s00246-019-02154-8

Cited by 6 publications

(3 citation statements)

References 13 publications

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Section: Discussionmentioning

confidence: 99%

“…Because patients lost to follow-up have a high rate of receiving invasive treatment, 39,40 it is necessary to explain the importance of lifelong cardiac care and education about the disease. 27 have received explanations about their own diseases since they were children; therefore, it is necessary to continue to provide appropriate information to patients.…”

Section: Patients' Disease-related Knowledgementioning

confidence: 99%

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Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease　― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

et al. 2021

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Background: Disease understanding in patients with congenital heart disease is important in transitional and lifelong care. This study aimed to develop the Japanese version of the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) and identify factors associated with disease-related knowledge. Methods and Results:After confirming the content and face validity of the scale, a questionnaire including the LKQCHD was distributed to 59 eligible patients aged >16 years attending a university hospital. For the 58 participants who responded (30 males, 28 females; median age 22 years), the mean (±SD) LKQCHD total score was 53.7±15.4, with mean (±SD) scores for each domain as follows: Disease and Treatment, 68.3±19.7; Preventing Complications, 45.8±19.0; Physical Activity, 74.1±34.1; Sex and Heredity, 37.9±35.4; and Contraception and Pregnancy, 40.2±29.1. Regarding known-groups validity, we found a positive correlation between the LKQCHD score and age (ρ=0.268, P=0.042), and a significantly low LKQCHD score in the moderate/severe disease group (η 2 =0.131, P=0.021). Regarding convergent validity, the LKQCHD score was positively correlated with the total and subscale scores of the Resilience Assessment Tool (r=0.213 [P=0.109] and r=0.405 [P=0.002], respectively). Conclusions:We confirmed the validity of the Japanese version of the LKQCHD, concluding that patient education regarding longterm complications, prevention methods, heredity, pregnancy, and childbirth is needed.

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Section: Discussionmentioning

confidence: 99%

Section: Patients' Disease-related Knowledgementioning

confidence: 99%

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease　― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

et al. 2021

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“…Informing CHD individuals and their caregivers on the reasons for undergoing follow-up is crucial as they should become responsible for themselves [ 21 ]. In the absence of a formal transition program, adolescents and young adults affected by CHD often do not know much about their condition and related outcomes [ 22 , 23 ]. On the other hand, when a formal program to manage transition is lacking, patients expose themselves to the possibility of a delay in the transfer of care or receiving inadequate care, with consequential unpleasant emotional and financial issues for them, their families, and the health care system in general [ 24 ].…”

Section: Introductionmentioning

confidence: 99%

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

et al. 2023

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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.

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Adolescent Women with Congenital Heart Disease: Self-Reported Reproductive Health Discussions with Health Care Providers

Katz

Lyon

Farrell

et al. 2022

Journal of Pediatric and Adolescent Gynecology

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Knowledge of Life-Long Cardiac Care by Adolescents and Young Adults with Congenital Heart Disease

Cited by 6 publications

References 13 publications

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease　― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease　― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

Adolescent Women with Congenital Heart Disease: Self-Reported Reproductive Health Discussions with Health Care Providers

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Knowledge of Life-Long Cardiac Care by Adolescents and Young Adults with Congenital Heart Disease

Cited by 6 publications

References 13 publications

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease ― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease ― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

Adolescent Women with Congenital Heart Disease: Self-Reported Reproductive Health Discussions with Health Care Providers

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Product

Resources

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Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease　― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease　― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―