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Background: Most people with congenital heart disease (CHD) now reach adulthood, and many wish to become parents. However, many in this group struggle with health challenges and are at risk for complications related to their heart disease early in life. What parenthood means for adults with CHD is still an unexplored area. Objectives: Describe experiences of being a parent with CHD.

Methods: Ten semi-structured interviews with six women and four men were conducted using an inductive approach. Inclusion criteria: (i) visiting a CHD clinic at least once after age 18 and (ii) having biological children. Data were analysed with qualitative content analysis, from a manifest level to deeper latent interpretation.

Results: The results comprised three themes. The complex emotional landscape of parenthood covered how heart disease became a tangible concern after becoming a parent, making life feel fragile. Strategies for navigating life as a parent illustrated how participants dealt with parenthood by adapting to their limitations and accepting their present and future. Sharing eases life’s challenges described the participants’ need to be met as whole persons facing both physical and emotional challenges.

Conclusion: The heart disease became visible in the daily lives of parents with CHD, both as a tangible reminder and in a physical sense. Healthcare professionals should address physical and emotional challenges, as parenthood can heighten awareness of personal vulnerability. The study, underlines the need for inquire about support and counselling needs, as parenthood for adults with CHD can add an extra dimension to life’s challenges. 

Aims With a growing population of women with congenital heart disease (CHD), pregnancies in this group are expected to increase. However, pregnancy in women with CHD is associated with increased adverse outcomes for both mother and child.

The aim of this study was to evaluate pregnancy and fetal complications in women with CHD, and to test their association with the modified WHO (mWHO) classification.

Methods and results Using two national registers, the national register for CHD and the Pregnancy Register, primiparous women giving birth between 2014 and 2019 were identified. Women with CHD, n=829, and women without CHD, n= 4137, were matched by birth year and municipality in an approximate 1:5 ratio. The women with CHD were classified according to the mWHO-criteria.

Caesarean deliveries (25.7% vs. 17.2%, p<0.001), preterm delivery (10.3% vs. 6.4%, p<0.001) and preeclampsia (6.2% vs. 4.1%, p=0.007) were more common in women with CHD compared to controls. Using logistic regression, there was an association between high mWHO-class (mWHO III, IV) and caesarean section (OR 3.4, 95% CI 1.8-6.7), preterm birth (<37 weeks) (OR 8.3, 95% CI 4.1-17.1) and preeclampsia (OR 3.8, 95% CI 1.5-9.9).

Conclusion Pregnancy complications are more common in women with CHD. In women with CHD, the mWHO-classification is associated with maternal complications and preterm birth. Thus, large national register data corroborate the advice provided in current guidelines, and the mWHO-class is deemed a valuable risk stratification tool in women with CHD.

Background: The number of pregnant women with congenital heart disease (CHD) is rising, and the disease poses increased risks of cardiovascular and obstetric complications during pregnancy, potentially impacting breastfeeding success. This study aimed to investigate breastfeeding in primiparous women with CHD compared to primiparous women without CHD, and to examine potential hindering factors for breastfeeding in women with CHD.

Methods: The data were gathered between 2014 and 2019 and obtained by merging the Swedish Congenital Heart Disease Register (SWEDCON) with the Swedish Pregnancy Register. Primiparous women ≥ 18 years of age with CHD (n = 578) were matched by age and municipality to 3049 women without CHD, giving birth after 22 gestational weeks. Multivariable logistic regression analysis was used to identify factors associated with non-breastfeeding in women with CHD.

Results: Fewer women with CHD breastfed than women without CHD two days (94% vs. 97%, p = 0.001) and four weeks after birth (84% vs. 89%, p = 0.006). When all women were analysed, having CHD was associated with non-breastfeeding at both two days and four weeks after birth. For women with CHD, body mass index (BMI) ≥ 30 (OR 3.1; 95% CI 1.4, 7.3), preterm birth (OR 6.4; 95% CI 2.1, 19.0), self-reported history of psychiatric illness (OR 2.4; 95% CI 1.2, 5.1), small for gestational age (OR 4.2; 95% CI 1.4, 12.2), and New York Heart Association Stages of Heart Failure class II − III (OR 6.0; 95% CI 1.4, 26.7) were associated with non-breastfeeding two days after birth. Four weeks after birth, factors associated with non-breastfeeding were BMI ≥ 30 (OR 4.3; 95% CI 2.1, 9.0), self-reported history of psychiatric illness (OR 2.2; 95% CI 1.2, 4.2), and preterm birth (OR 8.9; 95% CI 2.8, 27.9).

Conclusions: The study shows that most women with CHD breastfeed, however, at a slightly lower proportion compared to women without CHD. In addition, factors related to the heart disease were not associated with non-breastfeeding four weeks after birth. Since preterm birth, BMI ≥ 30, and psychiatric illness are associated with non-breastfeeding, healthcare professionals should provide greater support to women with CHD having these conditions.

Background: Poor maternal self-rated health in healthy women is associated with adverse neonatal outcomes, but knowledge about self-rated health in pregnant women with congenital heart disease (CHD) is sparse. This study, therefore, investigated self-rated health before, during, and after pregnancy in women with CHD and factors associated with poor self-rated health.

Methods: The Swedish national registers for CHD and pregnancy were merged and searched for primiparous women with data on self-rated health; 600 primiparous women with CHD and 3062 women in matched controls. Analysis was performed using descriptive statistics, chi-square test and logistic regression.

Results: Women with CHD equally often rated their health as poor as the controls before (15.5% vs. 15.8%, p = .88), during (29.8% vs. 26.8% p = .13), and after pregnancy (18.8% vs. 17.6% p = .46). None of the factors related to heart disease were associated with poor self-rated health. Instead, factors associated with poor self-rated health during pregnancy in women with CHD were ≤12 years of education (OR 1.7, 95%CI 1.2–2.4) and self-reported history of psychiatric illness (OR 12.6, 95%CI 1.4–3.4). After pregnancy, solely self-reported history of psychiatric illness (OR 5.2, 95%CI 1.1–3.0) was associated with poor self-rated health.

Conclusion: Women with CHD reported poor self-rated health comparable to controls before, during, and after pregnancy, and factors related to heart disease were not associated with poor self-rated health. Knowledge about self-rated health may guide professionals in reproductive counselling for women with CHD. Further research is required on how pregnancy affects self-rated health for the group in a long-term perspective.

Background: As more women with congenital heart disease (CHD) are reaching childbearing age, it becomes more common for their symptoms to be evaluated during pregnancy. However, pregnancy-related symptoms are similar to those caused by heart disease. This study investigated the prevalence of factors associated with symptoms during pregnancy in women with CHD.

Methods: The national birth register was searched for primiparous women with CHD who were registered in the national quality register for patients with CHD.

Results: Symptoms during the third trimester were reported in 104 of 465 evaluated women. The most common symptom was palpitations followed by dyspnea. Factors associated with symptoms were tested in a univariable model; higher NYHA classification (>1) (OR 11.3, 95%CI 5.5–23.2), low physical activity (≤3 h/week) (OR 2.1 95%CI 1.3–3.6) and educational level ≤ 12 years (OR 1.9 95%CI 1.2–3.0) were associated with having symptoms. In multivariable analysis, low physical activity level (OR 2.4 95%CI 1.2–5.0) and higher NYHA class (OR 11.3 95%CI 5.0–25.6) remained associated with symptoms during pregnancy. There were no cases with new onset of impaired systemic ventricular function during pregnancy.

Conclusion: Symptoms during pregnancy are common in women with CHD but are often already present before pregnancy. Because ordinary symptoms during pregnancy often overlap with symptoms of heart disease, it is important to know if symptoms were present before pregnancy and if they became worse during pregnancy. These results should be included in pre-pregnancy counselling and considered in the monitoring during pregnancy.

Objective: To investigate the time to first childbirth and to compare the prevalence of assisted reproductive treatment (ART) in women with congenital heart disease (CHD) compared with women without CHD.

Methods: All women in the national register for CHD who had a registered first childbirth in the Swedish Pregnancy Register between 2014 and 2019 were identified. These individuals (cases) were matched by birth year and municipality to women without CHD (controls) in a 1:5 ratio. The time from the 18th birthday to the first childbirth and the prevalence of ART was compared between cases and controls.

Results: 830 first childbirths in cases were identified and compared with 4137 controls. Cases were slightly older at the time for first childbirth (28.9 vs 28.5 years, p=0.04) and ART was more common (6.1% vs 4.0%, p<0.01) compared with controls. There were no differences in ART when stratifying for the complexity of CHD. For all women, higher age was associated with ART treatment (OR 1.24, 95% CI 1.20 to 1.28).

Conclusions: Women with and without CHD who gave birth to a first child did so at similar ages. ART was more common in women with CHD, but disease severity did not influence the need for ART. Age was an important risk factor for ART also in women with CHD and should be considered in consultations with these patients.

Background: In general, adults with congenital heart disease have reduced exercise capacity and many do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and to counteract acquired cardiovascular disease, therefore enablers and barriers for being physically active are important to identify.

Aim: To describe what adults with complex congenital heart diseases consider as physical activity, and what they experience as enablers and barriers for being physically active.

Methods: A qualitative study using semi-structured interviews in which 14 adults with complex congenital heart disease (seven women) participated. The interviews were analysed using qualitative content analysis.

Results: The analysis revealed four categories considered enablers and barriers – encouragement, energy level, approach and environment. The following is exemplified by the category encouragement as an enabler: if one had experienced support and encouragement to be physically active as a child, they were more positive to be physically active as an adult. In contrast, as a barrier, if the child lacked support and encouragement from others, they had never had the opportunity to learn to be physically active.

Conclusion: It is important for adults with congenital heart disease to have the opportunity to identify barriers and enablers for being physically active. They need knowledge about their own exercise capacity and need to feel safe that physical activity is not harmful. This knowledge can be used by healthcare professionals to promote, support and eliminate misconceptions about physical activity. Barriers can potentially be transformed into enablers through increased knowledge about attitudes and prerequisites.

Background: Due to advances in medical and surgical care adults with congenital heart disease (CHD) is a growing and aging population, that now outnumbers the children with CHD. In general, adults with CHD have reduced aerobic exercise capacity and nearly half of the patients do not reach current recommendations on physical activity. It is known that a low level of physical activity is associated with an increased risk for acquired cardiovascular disease. Studies has shown that adults with CHD are at the same, or even higher risk as the general population, for developing acquired cardiovascular disease.

Aim: The overall aim was to explore physical activity in adults with CHD with respect to associated factors, exercise self-efficacy and their own experiences.

Methods: This thesis is based on four papers. Paper I included 471 adults with CHD from three tertiary care centres in Sweden. The participants completed questionnaires measuring patient reported outcomes (e.g. SF-12) including physical activity level. Paper II was based on data from 79 adults with CHD from two tertiary care centers in Sweden and 42 matched controls. All participants completed questionnaires on exercise self-efficacy and quality of life, wore an activity monitor during four consecutive days and performed muscle endurance tests. Paper I and II were of cross-sectional design and analyses were done using logistic regression. In paper III and IV data were collected through structured interviews for 14 participants. They were asked about their experiences of being physically active (paper III), what they considered as physical activities, and their experiences of enablers and barriers to physical activity (paper IV). Qualitative content analysis was used in papers III and IV.

Results: Physical activity level (paper I) and exercise self-efficacy (paper II) were strongly associated with age where those over 40 years had a lower level of physical activity and lower exercise self-efficacy. Further, in paper I, it appeared that patient reported outcomes from SF-12 were strongly associated with physical activity level. In paper II, exercise self-efficacy was associated with performance in a muscle endurance tests. Paper III revealed an overall theme – It´s like balancing on a slackline that illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four themes: (1) Being an adventurer – enjoying the challenges of physical activity; (2) Being a realist – adapting to physical ability; (3) Being a non-doer – lacking prerequisites for physical activity and (4) Being an outsider – feeling excluded depending on physical ability. In paper IV, the analysis revealed a description of what adults with CHD consider to be physical activity and considered as enablers and barriers for physical activity. Four categories appeared; physical aspects, psychological aspects, psychosocial aspects and environmental aspects. In the psychosocial aspect, social support and encouragement in childhood to be physically active and no restrictions from e.g. parents, teachers and health care increased physical activity in adulthood.

Conclusions: Age, social support and accepting physical limitations seem to have an important impact regarding physical activity level and exercise self-efficacy. In contrast, the complexity of CHD and other medical factors appear to be of less importance for adults with CHD in relation to physical activity. In order to support adults with CHD to increase their physical activity and reach their full potential, it is important to explore and consider the various aspects that may affect physical activity in this population.

Background: Physical activity improves health, exercise tolerance and quality of life in adults with congenital heart disease (CHD), and exercise training is in most patients a high-benefit low risk intervention. However, factors that influence the confidence to perform exercise training, i.e. exercise self-efficacy (ESE), in CHD patients are virtually unknown. We aimed to identify factors related to low ESE in adults with CHD, and potential strategies for being physically active.

Methods: Seventy-nine adults with CHD; 38 with simple lesions (16 women) and 41 with complex lesions (17 women) with mean age 36.7 ± 14.6 years and 42 matched controls were recruited. All participants completed questionnaires on ESE and quality of life, carried an activity monitor (Actiheart) during four consecutive days and performed muscle endurance tests.

Results: ESE in patients was categorised into low, based on the lowest quartile within controls, (≤ 29 points, n = 34) and high (> 29 points, n = 45). Patients with low ESE were older (42.9 ± 15.1 vs. 32.0 ± 12.4 years, p = 0.001), had more complex lesions (65% vs. 42%, p = 0.05) more often had New York Heart Association functional class III (24% vs. 4%, p = 0.01) and performed fewer shoulder flexions (32.5 ± 15.5 vs. 47.7 ± 25.0, p = 0.001) compared with those with high ESE. In a logistic multivariate model age (OR; 1.06, 95% CI 1.02-1.10), and number of shoulder flexions (OR; 0.96, 95% CI 0.93-0.99) were associated with ESE.

Conclusion: In this study we show that many adults with CHD have low ESE. Age is an important predictor of low ESE and should, therefore, be considered in counselling patients with CHD. In addition, muscle endurance training may improve ESE, and thus enhance the potential for being physically active in this population.