Background
Cardiac disease complicates 1–4% of pregnancies and is a lead cause of maternal morbidity and mortality in low- and high-income countries [
1]. Prevalence data for cardiac disease in the first 12 months postpartum is less defined, however overall prevalence in pregnancy and postpartum is increasing [
2,
3]. Cardiac disease in pregnancy and postpartum (CDPP) encompasses a disparate range of acquired, congenital and genetic conditions. Women with CDPP have a higher risk of poor quality of life (QoL) and mental health outcomes due to the concurrence of multiple factors relating to particular cardiac factors and personal characteristics. Cardiac factors include: the association of cardiac disease with poorer mental health [
4,
5], prognostic uncertainty, cardiac disease and lower QoL [
6], and the specific challenges experienced by adults with congenital heart disease [
7] and younger people with cardiac disease in general [
8]. Personal characteristics that reduce QoL include: the presence of pre-existing and perinatal mental health conditions [
9], the effects of maternal near-miss events [
10], and the experience of mothering with a chronic illness [
11,
12]. These associations have mental health and QoL implications however, they are yet to be fully examined.
Disease-specific PROM tools are optimal [
13] and while there are multiple tools available for various cardiac diseases [
14], and for pregnancy and postpartum [
15], at present there are no validated PROMs specific to individual cardiac diseases in pregnancy and postpartum. A few studies have adapted existing tools to fill this gap [
16].
Patient reported outcomes measures use standardised, validated patient-completed questionnaires to quantify patient’s perceptions of their health and functional status, independent of interpretation by healthcare professionals (HCPs) or researchers [
17,
18]. Patient reported outcomes are essential in understanding and improving clinical and broader QoL outcomes and are integral to person-centred care and shared decision-making [
19]. Patient-reported anxiety, depression, perceived health, QoL and distress is an independent predictor of subsequent hospital readmission and costs, morbidity and mortality, and knowledge of these factors can aid in risk assessment and resource development and allocation [
19,
20].
Of the limited data available on patient-reported outcomes for women with CDPP most prevalent were findings of poorer mental health and lower QoL outcomes [
16]. It has also been reported that anxiety (generalised and cardiac-specific) and reduced quality of life persist up to 10 years after women’s CDPP [
21]. Further, women with CDPP are at an increased risk of being diagnosed with a major mental health disorder [
22] as a consequence of their illness and score almost twice as high for anxiety and depression as non-pregnant women and men with the same cardiac condition [
23,
24].
This exploratory study sought to understand the QoL and mental health for women who had cardiac disease in pregnancy and the first year postpartum in Australia. Understanding these women’s experiences will guide further research and provide important data for clinicians and healthcare services to improve the lives of women with CDPP.
Discussion
There is a paucity of research into the QoL and mental health of women who have had CDPP, despite the increasing prevalence of CDPP and its associated morbidity, mortality. In this exploratory study we describe the QoL and mental health of women who had CDPP in Australia. Our novel findings include: (1) the primacy of issues relating to motherhood, mothering and children, (2) the need for and lack of mental health support, (3) a substantial difference in the generic QoL compared to the HRQoL, (4) poor outcomes for HRQoL, health satisfaction and mental health, (5) poor QoL and mental health outcomes did not necessarily improve with time since diagnosis.
Our study found that the mean for overall QoL in the WHOQoL-Bref was comparable to Australian norms, however health satisfaction was lower for women with CDPP [
32]. The WHOQoL-Bref domain scores were markedly lower than norms for similarly aged females, in particular for the domains of physical health, (55.2 vs. 80.3), psychological (64.9 vs. 73.6) and social relationship (63.0 vs. 74.8) [
44].
Women scored themselves lower for QoL on the modified KCCQ HRQoL as opposed to the generic WHOQoL-Bref. This may be due to specific questions related to cardiac function on the HRQoL scale, suggesting disease-specific measures may be more sensitive and better able to pick up subtle changes and impacts. Higher levels of other social and environmental determinants of health that influence QoL such as housing security, and access to healthcare (most people in Australia can access universal healthcare) may affect this score or the HRQoL may be more sensitive to the issues pertinent to participants as it a specific cardiac QoL tool. The majority of research using the KCCQ is with older individuals with heart failure and include clinical and treatment outcomes, precluding comparison with our cohort of childbearing women [
45]. Individuals with low QoL and HRQoL have an increased for further cardiac events and increased mortality risk [
46,
47].
The scores for QoL and the domains did not necessarily improve substantially over time, reflecting the chronicity of CDPP, and that support and services need to continue beyond standard perinatal timeframes of six weeks postpartum. Further, this suggests the need for longitudinal studies of women who experience CDPP. Nearly three-quarters of women surveyed were anxious about their children developing a heart condition; this likely reflects understanding of the condition and the level of information and genetic counselling provided.
Clinically significant levels of anxiety and depression were scored for both the DASS-21 and the CAQ. DASS-21 scores for the total and three subscales of depression, anxiety and stress were higher than all-age Australian norms (13.98 vs. 8.30, 4.29 vs. 2.57, 3.41 vs. 1.74 and 6.27 vs. 3.99 respectively) [
40]. Participants were twice as likely to score at least moderate anxiety on the CAQ (45%) compared to the DASS-21 (22%) which may reflect sensitivity and or specificity of heart-related anxiety compared to general anxiety. The total and domain scores for the CAQ were comparable to Rosman’s study of women with peripartum cardiomyopathy [
21], and notably higher than studies on cardiac patients in general [
42,
48] and people presenting to the emergency department with non-cardiac chest pain [
49]. The scores were decidedly higher than norms for women of a similar age range who didn’t have cardiac disease [
50]. The CAQ subscale of avoidance may indicate heart-related anxiety, or it may reflect appropriate self-management and following medical advice, and this is worth further examination. Questions relating to interactions with HCPs and access to healthcare are also noteworthy, reflecting anxiety about their health and management by health professionals. Importantly, cardiac anxiety, depression and other mental health conditions are associated with increased risk for further cardiac events and mortality [
51], in particular, in women [
52]. These responses suggest a need for improved information and knowledge sharing, skill development and counselling [
53].
Our results are consistent with related cardiac, mental health and maternal health research. Being female is associated with an increased risk for anxiety and depression in a variety of cardiac conditions and is associated with increased health utilisation, morbidity and mortality [
23,
54,
55]. Further, individuals living with conditions associated with sudden cardiac death, such as Long QT Syndrome are at increased risk of anxiety, fear, depression and lower QoL [
56‐
58]. Adults with implantable cardioverter defibrillators (ICDs) are reported to have higher anxiety in general and specifically shock-related anxiety and this is associated with lower sexual functioning scores, another important aspect of QoL [
59]. Individuals living with genetic cardiac conditions are at risk of lower HRQoL, and higher levels of anxiety and depression compared with population norms [
57]. In addition, experiencing depression, including postpartum depression is associated with lower QoL, physical satisfaction and mental health scores [
60]. QoL and anxiety and depression may be modifiable with improved communication, psychological interventions and support, increased knowledge and genetic counselling as indicated [
57,
58].
In an environment of limited research on CDPP, PROs offer an opportunity to enhance researcher and clinical knowledge, clinical outcomes, and QoL for women. Using PROMs can lead to better symptom recognition which is especially relevant as cardiac disease is under-recognised and under-reported in females [
61‐
63]. PROMs enable patients to describe issues or respond to questions about issues that were not usually discussed, assisting them to highlight unmet needs [
14,
36,
64‐
66]. The use of PROMs may prompt different communication approaches and content, leading to greater exchange of information, improved relationships, greater referrals, and co-ordination of care, as well as increased person-centred care [
14,
66‐
68]. Finally, being involved in providing feedback through PROs is associated with improved psychological outcomes, HRQoL and patient satisfaction [
61,
67,
68].
The results of this study indicate all the above characteristics of PROMs are desirable and may address the negative aspects of their PROs; however, this is dependent on the attributes of the PROM. A content comparison of 34 cardiac disease PROMs found a preponderance of PROMS related to physical and emotional functions, with no explicit mention of issues related to parenting or mothering which was paramount for our participants [
13]. A systematic review of research on cardiac disease in pregnancy found 94% reported only on clinical or adverse effects and none included PROs on life impact and functioning [
69]. However, pregnant women with cardiac disease want QoL and mental health included as PROs and these should be incorporate alongside the more clinically based outcomes [
69,
70]. The CDPP-specific questions in our survey were the items that had the strongest responses, highlighting their importance to participants. It is imperative that women with CDPP are involved in future PROM design to capture these issues as well as topics including contraception counselling and use, sexual (dys)function, pregnancy and postpartum, and parenting and to be patient-centred [
71‐
75].
Strengths and limitations
This study is the first to our knowledge that includes a diversity of cardiac conditions across the three categories of acquired, congenital and genetic heart disease, and the first to include women who were diagnosed up to 12 months postpartum. This extended timeframe is particularly relevant for pregnancy-associated spontaneous coronary artery dissection and peripartum cardiomyopathy where late cases are diagnosed up to a year postpartum. In addition, we included a diversity of PROMs to capture a broad range of data and developed new questions that revealed important outcomes for women with CDPP. Participants had their first pregnancy affected by CDPP on average 5 years prior to completing the survey and this provides a useful longer-term perspective, and the reported prevalence of negative HRQoL and mental health outcomes highlights the persistence of issues related to CDPP. In addition, surveying patients close to a health event can lead to a distortion of results with survival gratefulness and optimism being overstated, and the effects of attempting to re-enter life, resume normal functions, work and social interactions, and in the case of CDPP, embark on mothering with a cardiac condition, may not yet be fully realised and thus unable to be captured at this early stage [
76].
There are also clear limitations to this descriptive study. Recruitment was limited to those using Facebook or on mailing lists of cardiac organisations and registries, and recruited numbers were below what was required to perform further statistical analysis and to be considered representative. We did not record disease severity which is associated with degree of QoL impairment [
77]. Additional topics that would be valuable to examine but were not included are those relating to breastfeeding and having difficulty due to chest wall surgery or being advised to cease breastfeeding due to cardiac medications, the impact on sexual relationships, and the specific issues associated with treatments (e.g., ICDs). Further, it is noted that some women’s rating of experiences relates to healthcare episodes many years ago, and may be affected by recall bias or services may have changed since that time. These limitations notwithstanding, there are important strengths in understanding women’s experiences, and these provide weight for arguing for a better healthcare experience informed by evidence-based research.
Conclusion
This study found women with CDPP had reduced QoL and mental health outcomes which was not necessarily ameliorated over time. This had an additive effect of increased risk of poorer cardiac outcomes and increased health service utilisation. Some differences were noted based on category of disease and timing of diagnosis of CDPP, however longitudinal studies are required to confirm and expand on this. Women need increased support, information, and opportunities to engage as active participants in their healthcare, noting the centrality of being a mother to their experience, identity, and needs.
While in recent years more women are included as participants in research, issues around mothers and mothering remain largely invisible in CDPP research. This has resulted in issues that are relevant to women such as having further children, breastfeeding, contraception, the impact on their ability to mother in the way they want to, fear for the children’s cardiac health and their own ability to survive long enough to raise their children not being acknowledged or investigated. This could be addressed in routine clinical care through engaging women with CDPP to develop comprehensive and sensitive disease-specific PROMs. These can be integrated into clinical management and provide an opportunity to characterise women’s health and QoL in the longer-term, evaluate the impact of health interventions, and improve outcomes.
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.