TRANSFER DESTINATIONS AND RISK FACTORS FOR NO FOLLOW-UP AND ‘NO APPROPRIATE FOLLOW-UP’ IN YOUNG ADULTS WITH CONGENITAL HEART DISEASE AFTER LEAVING PEDIATRIC CARDIOLOGY

AbstractBackground:Children with congenital heart disease (CHD) require lifelong cardiology follow-up. Many experience gaps in care around the age of transition to adult-oriented care with associated comorbidity. We describe the impact of a clinic-based intervention on follow-up rates in this high-risk population.Methods:Patients ≥11 years seen in a paediatric outpatient CHD Transition Clinic completed self-assessment questionnaires, underwent focused teaching, and were followed on a clinic registry with assessment of care continuation. The cohort “lost to follow-up” rate, defined as absence from care at least 6 months beyond the recommended timeframe, was compared with a control group. Secondary outcomes included questionnaire scores and adult cardiology referral trends.Results:Over 26 months, 53 participants completed an initial Transition Clinic visit; 43% (23/53) underwent a second visit. Median participant age was 18.0 years (interquartile range 16.0, 22.0). The cohort’s “lost to follow-up” rate was 7.3%, which was significantly lower than the control rate (25.9%, p < 0.01). Multivariable regression analyses demonstrated clinic participation as the only factor independently associated with follow-up rates (p = 0.048). Transition readiness was associated with older age (p = 0.01) but not sex, univentricular heart, interventional history, or surgical complexity. One-third of adult participants transferred to adult care.Conclusions:A CHD Transition Clinic intervention can improve follow-up rates in adolescents and young adults. Age is an important factor in transition readiness, and retention of adults in paediatric care appears multi-factorial. We postulate that serial assessments of self-management, focused education, and registry utilisation may improve patient outcomes by reducing lapses in care.

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Incidence and risk factors for chronic kidney disease in patients with congenital heart disease

Pediatric Nephrology ◽

10.1007/s00467-021-05129-1 ◽

2021 ◽

Author(s):

Nai-Wen Fang ◽

Yu-Chieh Chen ◽

Shih-Hsiang Ou ◽

Chun-Hao Yin ◽

Jin-Shuen Chen ◽

...

Keyword(s):

Risk Factors ◽

Chronic Kidney Disease ◽

Congenital Heart Disease ◽

Heart Disease ◽

Kidney Disease ◽

Congenital Heart ◽

Heart Surgery ◽

Creatinine Ratio ◽

Incidence Of Ckd

Abstract Backgrounds Chronic kidney disease (CKD) is underdiagnosed in children with congenital heart disease (CHD). Our aim was to study the incidence of CKD in CHD children and identify risk factors for CKD. Methods CHD patients were enrolled from the Kaohsiung Veterans General Hospital database between 2010 and 2019. Patient age at enrollment was age at first visit to the hospital. The end of follow-up was marked by the last measurement of serum creatinine, urine protein-to-creatinine ratio (UPCR), or urine microalbumin-to-creatinine ratio (UACR) after enrollment, and only patients who underwent the aforementioned tests in 2 different years were included. Patients with an estimated glomerular filtration rate (eGFR) < 90 mL/min/1.73m2 were diagnosed as having CKD and were further classified into clinically recognized CKD (CR-CKD, defined as eGFR <60 mL/min/1.73m2, UPCR >0.5, or UACR >30 mg/g) and non-clinically recognized CKD (NCR-CKD). Their demographic data, CHD category, heart surgery types, medications, and contrast-related examinations during follow-up were collected. Results The study included 359 CHD patients, of whom 167 (46.5%) developed CKD (18 patients with CR-CKD and 341 with NCR-CKD). Patients with CR-CKD were significantly older at enrollment than patients with NCR-CKD. Corrective heart surgery may be a protective factor for CKD. Furthermore, cyanotic heart disease, two or more image-related contrast exposures, and diuretic use may be associated with CKD. Conclusion CHD patients have a high incidence of CKD. The early detection of CKD and prompt corrective heart surgery for CHD may be beneficial for kidney function. Graphical abstract

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Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden

BMJ Open ◽

10.1136/bmjopen-2021-049556 ◽

2021 ◽

Vol 11 (10) ◽

pp. e049556

Author(s):

Sandra Skogby ◽

Eva Goossens ◽

Bengt Johansson ◽

Philip Moons ◽

Ewa-Lena Bratt

Keyword(s):

Congenital Heart Disease ◽

Young Adults ◽

Heart Disease ◽

Young People ◽

Congenital Heart ◽

Preventive Strategies ◽

Factors Affecting ◽

Follow Up Care ◽

Low Prevalence

In-depth understanding of factors perceived by young people with congenital heart disease (CHD) to affect continued follow-up care is needed to tailor preventive strategies for discontinuation of follow-up care. To identify facilitating factors, low-prevalence settings in terms of discontinuation should be investigated.ObjectiveThis qualitative study describes factors affecting continued follow-up as perceived and experienced by young adults with CHD.ParticipantsUsing a mixed purposive sampling technique, 16 young adults with CHD were included. Three participants had discontinued follow-up care and 13 had continued follow-up care after transfer.SettingParticipants were recruited from all seven university hospitals in Sweden, which is considered a low-prevalence setting in terms of discontinuation.DesignIndividual interviews were performed and subjected to qualitative content analysis.ResultsThe analysis resulted in three main categories, illuminating factors affecting continued follow-up: (1) motivation for follow-up care; (2) participation in care and sense of connectedness with healthcare provider (HCP) and (3) care accessibility. The choice of continuing follow-up or not was multifactorial. Knowledge of your CHD and the importance of continuing follow-up care was a central factor, as well as experiencing CHD-related symptoms and having ongoing or planned medical treatment or interventions. Sensing a clear purpose with follow-up care was facilitating, as was feeling well treated and cared for by HCPs. Practical aspects, such as travel distance was also stressed, as well as active invitations and reminders for visits.ConclusionFactors on both patient, hospital and healthcare system level were raised by participants, stressing the importance of holistic approaches when developing preventive strategies for discontinuation. There is a need for improved skills and competencies among HCPs, as well as a person-centred approach to follow-up care. In addition, specific healthcare needs and remaining transitional needs after transfer to adult care require careful consideration to prevent discontinuation.

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Impact of Partnership Between Children’s HeartLink and IQIC Database With a Pediatric Cardiology and Cardiovascular Surgery Center in Brazil

World Journal for Pediatric and Congenital Heart Surgery ◽

10.1177/2150135118825151 ◽

2019 ◽

Vol 10 (3) ◽

pp. 270-275 ◽

Cited By ~ 1

Author(s):

Ulisses Alexandre Croti ◽

Alexandre Noboru Murakami ◽

Carlos H. De Marchi ◽

Bruna Cury Borim ◽

Joseph A. Dearani ◽

...

Keyword(s):

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Pediatric Cardiology ◽

Cardiovascular Surgery ◽

Local Development ◽

Morbidity And Mortality ◽

Surgery Center ◽

Risk Categories

Background: Aiming at fostering local development of cardiology and cardiovascular surgery centers in developing countries, the nonprofit organization Children’s HeartLink (CHL) encourages centers to participate in the International Quality Improvement Collaborative Database for Congenital Heart Disease (IQIC). The definition of parameters and data to evaluate patient treatment provides an opportunity to improve quality of care, reducing morbidity and mortality. The objective of the study was to analyze the outcomes of the partnership between CHL and IQIC database with a single pediatric cardiology and cardiovascular surgery center for seven years providing continuous follow-up to guide actions aiming at morbidity and mortality reduction in patients with pediatric and congenital heart diseases. Methods: Data were collected from January 2011 to December 2017 independently and with external audits and included preoperative information (demographic data, nutritional status, chromosomal abnormalities), Risk Adjustment for Congenital Heart Surgery (RACHS-1) score, and postoperative information such as infections or complications within the first 30 days or until hospital discharge and/or death. Results: In the preoperative period, there was a trend toward an increase in the number of newborn patients. The postoperative period showed significant surgical procedure variations between groups for RACHS-1 risk category ( P = .003), prevalence of risk categories 2 and 3, and an increase in risk categories 4, 5, and 6, mainly in the last two years. Decreases in surgical site infection ( P = .03), bacterial sepsis, and other infections (both P < .001) were observed. At the 30-day postoperative follow-up, there was a decrease of in-hospital ( P = .16) and 30-day ( P = .14) mortality. Conclusion: The partnership between CHL and this seven-year analysis of IQIC database demonstrated structural and human flaws, whose resolution led to significant decrease in infection and reduction in mortality despite an increase in the complexity of our pediatric and congenital heart disease population.

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Risk factors for loss to follow-up among children and young adults with congenital heart disease

Cardiology in the Young ◽

10.1017/s104795111100148x ◽

2011 ◽

Vol 22 (3) ◽

pp. 307-315 ◽

Cited By ~ 33

Author(s):

Andrew S. Mackie ◽

Gwen R. Rempel ◽

Kathryn N. Rankin ◽

David Nicholas ◽

Joyce Magill-Evans

Keyword(s):

Risk Factors ◽

Congenital Heart Disease ◽

Heart Disease ◽

Confidence Interval ◽

Odds Ratio ◽

Congenital Heart ◽

Family Income ◽

Loss To Follow Up ◽

History Of

AbstractObjectiveTo identify risk factors for loss to cardiology follow-up among children and young adults with congenital heart disease.MethodsWe used a matched case-control design. Cases were born before January, 2001 with moderate or complex congenital heart disease and were previously followed up in the paediatric or adult cardiology clinic, but not seen for 3 years or longer. Controls had been seen within 3 years. Controls were matched 3:1 to cases by year of birth and congenital heart disease lesion. Medical records were reviewed for potential risk factors for loss to follow-up. A subset of cases and controls participated in recorded telephone interviews.ResultsA total of 74 cases (66% male) were compared with 222 controls (61% male). A history of missed cardiology appointments was predictive of loss to follow-up for 3 years or longer (odds ratio 13.0, 95% confidence interval 3.3–51.7). Variables protective from loss to follow-up were higher family income (odds ratio 0.87 per $10,000 increase, 0.77–0.98), cardiac catheterisation within 5 years (odds ratio 0.2, 95% confidence interval 0.1–0.6), and chart documentation of the need for cardiology follow-up (odds ratio 0.4, 95% confidence interval 0.2–0.8). Cases lacked awareness of the importance of follow-up and identified primary care physicians as their primary source of information about the heart, rather than cardiologists. Unlike cases, controls had methods to remember appointments.ConclusionsA history of one or more missed cardiology appointments predicted loss to follow-up for 3 or more years, as did lack of awareness of the need for follow-up. Higher family income, recent catheterisations, and medical record documentation of the need for follow-up were protective.

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