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Division of Nephrology, Department of Medicine, Women’s College Hospital, Division of Nephrology, Department of Medicine, University of Toronto, Toronto, Ontario, CanadaDivision of Nephrology, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
Division of General Internal Medicine, Obstetric Medicine, Department of Medicine, Department of Obstetrics, McMaster University, Hamilton, Ontario, Canada
Division of Nephrology, Department of Medicine, Sunnybrook Health Sciences Centre, Division of Nephrology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
Hypertensive disorders of pregnancy (HDP) are a risk factor for future cardiovascular disease, therefore follow-up and implementation of early interventions is recommended. We performed a qualitative study to assess the feasibility and user response to a mobile-health tool and virtual consult aimed at educating people with HDP on future cardiovascular risk, and better understand patients’ priorities for postpartum care.
Methods
Participants with a history of HDP in the last five years had access to an online educational tool and participated in a virtual consult to discuss their cardiovascular risks after HDP. Participants were invited to a focus group to obtain feedback on their postpartum experience and on the program.
Results
20 female participants were enrolled in the study between January 2020 and February 2021. 16 participants took part in one of five focus groups. Participants reported a lack of awareness of future cardiovascular disease risks prior to participating in the program, identifying barriers to counselling including traumatic birth experiences, inappropriate timing and competing priorities. Participants reported that the virtual Her-HEART program was an effective avenue to provide counselling on long-term cardiovascular risks. They highlighted the importance of coordinated care pathways and mental health support in postpartum follow-up programs.
Conclusion
We have shown the feasibility of an educational website and virtual consult to facilitate counselling in people affected by hypertensive disorders of pregnancy. Our results shed light on patient-reported priorities related to the content and delivery of postpartum counselling after HDP.
Hypertensive disorders of pregnancy (HDP) affect approximately 7% of pregnancies, are a leading cause of maternal morbidity, and encompass a spectrum of diseases including chronic hypertension, gestational hypertension, pre-eclampsia, eclampsia, and HELLP syndrome (hemolysis, elevated liver enzymes, and low platelets)
. A history of a hypertensive disorder of pregnancy is a risk factor for future hypertension, diabetes, dyslipidemia, chronic kidney disease, and premature cardiovascular disease (CVD)
. HDP is therefore recognized as a female-specific CVD risk factor requiring counselling, follow-up, and implementation of early interventions including health behaviour modifications
There is a documented gender gap in cardiovascular disease management and prevention, prompting National “Calls to Action” to promote heart health for women
. However, physicians and patients are often unaware of the link between HDP and future CVD, and tailored evidence-based preventative interventions are lacking
. Postpartum cardiovascular prevention clinics are a proposed solution, but are limited by availability (particularly in rural areas) and poor attendance rates
Telemonitoring of blood pressure in the immediate postpartum period has been shown to be feasible and highly acceptable by patients, as well as cost-effective
Niu B, Mukhtarova N, Alagoz O, Hoppe K. Cost-effectiveness of telehealth with remote patient monitoring for postpartum hypertension. The journal of maternal-fetal & neonatal medicine : the official journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstetricians. 2021:1-7.
. Beyond the initial postpartum period focused on blood pressure monitoring, ongoing postpartum counselling is important, including identification and education on CVD risk, strategies to lower risk, and reproductive planning
. As such, we designed the Her-HEART program, a mobile-health tool and virtual consult aimed at educating people with HDP and their physicians on future CVD risks and prevention strategies. The program included a qualitative evaluation to assess the feasibility and user response to the program in Ontario, Canada.
Methods
Inclusion criteria for participation in Her-HEART were: age ≥18, English-speaking, currently living in Ontario, Canada, with a history of any hypertensive disorder of pregnancy in the prior five years. Patients with a diagnosis of chronic kidney disease and/or solid organ transplant recipients were excluded. Participant recruitment included self-identification for the study through online advertisements (Preeclampsia Foundation of Canada Facebook page, Sunnybrook Health Sciences Centre website), paper advertisements posted at Sunnybrook Health Sciences Centre, or referral by a physician involved in their prenatal or postnatal care.
After providing informed consent, participants were given access to an online educational tool designed for the study (https://www.herheartproject.ca/). They were asked to complete a questionnaire to obtain basic demographic and health information. The website content was designed by the study authors with input from two patient partners (JD and anonymous). Website content included an explanation of HDP and the associated long-term cardiovascular health risks, along with general recommendations for cardiovascular risk reduction. All participants were also offered a one-time virtual (video) consultation over a secure network with a specialist physician in nephrology/hypertension (LD) to discuss the participant’s personal pregnancy and health history and provide individualized counselling. To take part in the virtual consult, participants were required to provide the name of their primary care provider (PCP). PCPs were sent a letter informing them of their patient’s involvement in the study, as well as the URL to a portion of the website dedicated to educating healthcare professionals on the long-term CVD risks associated with a history of HDP (https://www.herheartproject.ca/hcp). PCPs were also given a letter detailing the virtual consult and including general and specific recommendations for follow-up. The virtual consult followed a pre-determined outline (Figure 1). Content was derived from content experts and templates used by pre-existing postpartum clinics. At the virtual session, participants were counselled on: the increased risk of future CVD; the link between the early and more frequent development of CVD risk factors (hypertension, diabetes, dyslipidemia and chronic kidney disease) post -HDP; and on the importance of follow-up with their PCP to identify and mitigate these risks. Discussions emphasized the importance of medications and health behaviours to lower the risk of recurrent HDP in subsequent pregnancies if applicable, and in lowering the risk of CVD and CVD risk factors using non-pharmacological and pharmacological approaches.
Figure 1Template for virtual consult. HDP= hypertensive disorder of pregnancy, CVD= cardiovascular disease
This qualitative descriptive study sought to elucidate: 1) the postpartum experience of people affected by HDP; 2) assess feedback on the Her- HEART pilot project; and 3) better understand patients’ priorities for postpartum follow up. Participants were invited to a teleconferenced focus group to obtain feedback on the program. Each session included 4-6 participants and was conducted by a qualitative researcher with expertise in this method (LB). Questions centered on the patient experience prior to and during participation in the Her-HEART program and explored participants’ opinions on the qualities of an ideal postpartum follow-up program for those who experienced HDP.
All focus groups were audio recorded and transcribed verbatim. The focus group transcripts were coded using thematic analysis by two researchers (LB, LD). Focus groups were continued until thematic saturation occurred. A deductive approach was used to identify participants’ perspectives on the facilitators and barriers to participating in the program and utilizing mobile-health tools, as well as in implementing health behaviour modifications. Inductive coding was also integrated to capture additional emerging themes related to patients’ perspectives and experiences. This approach was chosen to address gaps in the existing literature in the postpartum population and to obtain information that might be used to guide future design of cardiovascular risk reduction care models in the clinical and research settings. The analysis was conducted using QSR International NVivo 9 qualitative software. Once preliminary analysis was complete, draft themes were reviewed and finalized by the study authors.
The study was approved by the Research Ethics Board at Sunnybrook Health Sciences Centre in Toronto, Ontario, Canada.
Results
34 people initially expressed interest in Her-HEART. 4 were ineligible due to timing (>5 years from affected pregnancy), 3 lived outside of the province of Ontario, and 1 person was currently pregnant therefore opted not to participate. Six of the remaining 26 potential participants did not follow-up with the research coordinator after the initial conversation. 20 female participants were therefore enrolled in the study between January 2020 and February 2021, all of whom self-identified through online or hospital advertisements. Baseline demographic and questionnaire responses are outlined in Table 1.
Eighteen of the 20 participants participated in a video consult between November 2020 and March 2021, the mean (standard deviation [SD]) duration of which was 45 (+/- 16) minutes. During the video consult, all participants reported a history of pre-eclampsia in the index pregnancy, one patient experienced eclampsia, and two patients experienced a fetal loss related to HDP. 16 participants took part in one of five telephone focus groups. Themes were separated into three categories: (I) Patient experience prior to the program (II) Feedback on the Her-HEART program and (III) Patient perspective on long-term follow-up after HDP. Representative quotes are included from unique participants (1 to 5) and study groups (A to E).
I: Patient experience prior to the Her-HEART program
Awareness of future CVD risk after HDP
Many participants stated that prior to participating in Her-HEART, they were unaware of the long-term cardiovascular risk associated with HDP and the need for additional postpartum follow-up care. A common perception among participants was that there was also a general lack of awareness and knowledge among their healthcare practitioners (HCP) regarding future cardiovascular risks. Most participants stated that the long-term effects of HDP were either not discussed with them at all by their HCPs, and if they were, they were generally mentioned or not followed up on. Participants reported a need to self-advocate to their providers for follow-up care.
And I had no idea, three kids later, preeclampsia three times, about what the future risks are for me in relation to heart health. (C4)
I was told by the internal medicine people that I would have a higher risk of heart disease and that I should advocate for myself with my family GP. I have been attempting to do that now for many years and still it’s not recognized on my family GP’s radar. (C1)
While the initial scripted question was aimed at understanding participants’ experience of cardiovascular risk prevention counselling prior to participating in Her-HEART, a large proportion of patients discussed their health experiences in general in the antepartum and postpartum period. Participants frequently mentioned that their concerns prior to giving birth were not taken seriously and were “brushed off” by their providers. Some participants perceived a significant lack of knowledge among their healthcare providers regarding the signs and symptoms of HDP.
I had intense swelling as well. And again, I’m flagging this to my healthcare team and they’re just chalking it up to ‘Well you know, there’s swelling in pregnancy.’ […] And so I do feel like the healthcare system failed me completely. (A4)
As a racialized woman I felt like my doctor sort of when I expressed concern, brushed away – this was when I was pregnant the first time, brushed away some of the warning signs that I was noticing in terms of my body and how I was feeling. And obviously it turned into preeclampsia early on at like 30 weeks. (C4)
I was a third-generation woman to have preeclampsia and no one asked me when I was starting to show signs at 18 weeks, has there been any family history. And I was made to feel like I was just like a wimpy woman who couldn’t handle pregnancy and so I shut-up about my symptoms. Like there were so many signs and risk factors and none of them were asked about. (C3)
Patient-identified barriers to postpartum counseling: traumatic birth experience, mental health state, inappropriate timing, competing priorities
Many participants spoke about the trauma surrounding their birth experience, as well as the mental health effects, particularly posttraumatic stress, that they experienced. As a result, many participants reported an inability to mentally process any information that may have been shared with them and were not receptive to learning about any future risks or follow-up care in the immediate postpartum period. Participants stated that postpartum counselling, when it occurred, was focused on the risk of recurrence of a hypertensive disorder of pregnancy in future pregnancies. They highlighted the importance of appropriate timing of counselling as being as integral as the content provided.
When they told me ‘Don’t have any more kids…like there’s this risk and that risk…’ I didn’t care. I hadn’t even met my son yet. And you know, then there was a long NICU journey, we almost lost him. […] it was just survival mode to make sure he came home. And I didn’t care about myself at all. Like there was no taking care of me at that point in my time and those conversations meant nothing. (C3)
I think like as much as the physical health needs to be taken care of, you don’t have the headspace. And if your mental health is so bad that you can’t even – like I don’t remember. […] Even the first like three to six months, I don’t remember it because I was so stressed. (D2)
Receiving a lot of the information that we have received when you’re in that – like still in that traumatic processing time after your birth experience, and not being able to receive that information during that time, I think that happens more often than it should. […] We’re not able or ready mentally, physically anything to process any of that information six weeks post what most of us had was a very traumatic experience. (C1)
II: Feedback on the Her-HEART program
Website provided background information to support self-advocacy
Many participants appreciated the simple and concise language that was used on the Her-HEART website. Some participants also found the website useful in that it provided them with essential background information to educate and prepare them for future follow-up care with their HCPs.
I also thought because there was an opportunity to get a little education ahead of time and […] because I sort of read the website and I thought about things ahead of time, I had actual questions more so than when I go to the doctor and you’re kind of not knowing what they’re going to tell you ahead of time. (B1)
Suggestions for website improvement: increased diversity of information, specific and detailed information and resources, and access to new and upcoming research
Although many participants appreciated that the website did not contain an overwhelming amount of information, some suggested the importance of including more diverse information, particularly around the impacts and complexities preeclampsia may have on people of various ethnicities and racialized people. Having access to specific information on the website related to testing and scheduling appointments was another suggestion provided by participants. With respect to diagnostic testing, participants mentioned that a timeline or schedule could help guide them as to what specific tests they should be requesting, what these tests are for, when they should be requesting them, and who they should be contacting (family physician and/or specialist). As a way to support self-advocacy, some participants suggested providing access to new and upcoming research related to HDP on the website so that they can stay informed and updated on the condition they experienced.
Virtual consult is an effective medium to increase awareness and education
The majority of participants were appreciative of the virtual consultation in that it increased their awareness and understanding of future risks, and provided them with helpful, detailed information. Many participants felt they were able to generate rapport with the practitioner despite the virtual modality. Although some participants mentioned the importance of seeing a physician in person, the majority of participants preferred the convenience of virtual appointments. Participants reported that virtual appointments were more of a relaxing and less intimidating experience, require less planning, and eliminate the need for travel.
I liked the virtual aspect because I feel like your guard is down. I don’t know, I don’t like the clinical like when you’re in a room and you feel like you’re on the spot, whereas this is a lot more relaxed. (B2)
Like I think COVID did a great thing and like forcing everyone into virtual care just because [online platform] is amazing. So it’s easily done between naps and that sort of thing. But having to check out there, it was a mission because I don’t live near [University Hospital] so that was really hard to have to plan that. (A4)
Virtual consult empowered self-advocacy
Participants frequently mentioned that the virtual consultation helped to encourage and empower them to seek follow-up and improve self-advocacy efforts.
I feel like it empowered me to know what follow-up I should ask for in the future. And you know, we talked a little bit about testing blood pressure, and how often that should be done and simple things like that. […] So little things like that sort of helps with advocacy I guess going forward and knowing what the things are to watch for. I think I’ve never been very good at – like I’ve always been a little bit intimidated by doctors and that process. And so I think feeling like I just have a bit better understanding of my own health and things I should watch for going forward I think will make sure that I advocate a little bit better for myself. (B1)
I think it did encourage me to do some things like especially if I were to have another pregnancy. Like seeing my doctor for a baby planning visit beforehand was one suggestion that I think I will definitely follow up with that I probably wouldn’t have done otherwise. (A2)
Positive impact on health behaviours
With an increased awareness and knowledge of cardiovascular risk factors, many participants revealed that they had made positive changes to their health behaviours including prioritizing their health, increasing physical activity, and improving nutrition habits.
This study has made a difference in just like I said I think prioritizing my health, if I were to summarize that, more in postpartum health which is very easily forgotten I think. I’m a first-time mom so it’s all about baby. I’m a mom of a preemie so it was like okay I don’t even know how to do this. And there was so much learning for that. I was definitely not thinking about myself. So even though it’s scary to hear some of those facts, and what I’ve learned through this program it’s just more of a reason to prioritize myself. (A4)
So trying to kind of get back to the weight I was before I had kids is kind of a big focus now. And the program definitely pushed me to do that. I mean it’s always been in the back of my mind, but I would never actually get up and go. But now it’s kind of like well I really should because I have kids, I have young kids, I want to make sure that I’m around for them and that I don’t have issues later on. So it’s definitely pushed me in that direction for sure. (B2)
III: Patient perspectives on follow-up programs after a hypertensive disorder of pregnancy
Frequency and timing of follow-up
The suggested number of appointments in an “ideal” follow-up program varied from monthly virtual appointments to being seen annually. Having at least two appointments where the first provided information to the patient, followed by a second appointment to discuss the information and formulate a plan was also suggested. Given the birth trauma that many of the participants experienced, most participants thought that the timing of a follow-up appointment should be, at the earliest, six to twelve months post-delivery in order to give them time to recover physically and mentally.
Coordinated pathways of care
Most participants stated that they would prefer to follow-up with a physician who had knowledge of this area and who was ideally involved in their peripartum care. While sharing their stories, many participants spoke about the disconnect and lack of coordination they felt between the healthcare providers involved in their postpartum course. Some participants felt that they were provided with inconsistent advice, and that their primary care providers were inadequately informed about their experience. Therefore, participants stressed that having continuity of care and a team-based approach is a vital aspect to follow-up care. A multidisciplinary approach including a dietitian and mental health support worker was also suggested.
I thought there was a huge disconnect between what was happening at [University Hospital] and then what my physician knew in terms of what happened like with this preeclampsia. And then I had to fill her in as best as I could from my recollection. (C4)
Mental health and peer support were felt to be integral component to a follow-up program
When participants were asked their thoughts about future follow-up programs for people after experiencing HDP, mental health support was commonly mentioned as an essential component that needs to be incorporated with follow-up care. Participants also spoke about the importance of having access to support groups with other people who have undergone similar experiences.
I think once your mental health gets on track, you can probably start to focus on your physical health after. Plus no one cares about their physical health after having a baby. […] You’re just trying to survive. [chuckles] Yeah so anyway, I 100 percent agree. Mental health is the first thing. (D2)
I would just say that this is a really nice experience to just talk to people that have had this one condition with so many different experiences. So it’s nice to even just chat on this level because I don’t know if there’s support groups around here or anything, but it’s definitely an important factor to speak about and share experiences like that. (A4)
Conclusions
We have demonstrated the feasibility and patient satisfaction of using the combination of a website and virtual consultation to educate people with a history of a HDP on their long-term cardiovascular risks as well as risks of recurrence of HDP in future pregnancies. Consistent with previous research
, many participants stated that they were unaware of the long-term cardiovascular risk factors associated with HDP and the need for additional postpartum follow-up care prior to participating in Her-HEART. Participants reported increased knowledge, motivation for self-advocacy, and positive health behaviours after participating in the program. The majority of participants perceived significant benefits of virtual appointments, including less travel time and increased comfort level.
Some participants reported negative interactions with the healthcare system during the pregnancy and postpartum period. Our participants’ perspectives were in line with a recent qualitative study in which women with HDP reported a need for improved communication (warm-handoffs) of their diagnosis of HDP and for more detailed postpartum counselling
. The patient experience during the pregnancy, labor and delivery, and immediate postpartum period may significantly impact a patient’s willingness to follow-up in the first year postpartum and therefore impact the opportunity for long-term CVD prevention (Figure 2).
Our focus group results reveal important considerations regarding the content and delivery of postpartum counselling after HDP (Figure 3). Participants varied in their opinions regarding desired timing and frequency of visits. This may reflect the wide spectrum of HDP presentations and physical and emotional consequences, highlighting the importance of flexibility and patient-centeredness when developing postpartum follow-up programs. While short-term follow-up after HDP is imperative to mitigate the increased risks of hypertensive emergencies during the immediate postpartum period
, an individualized approach to timing of CVD risk reduction counseling may be more appropriate than a “check-list” approach in the early weeks and months postpartum
Quality Committee SfM-FMEasso Society for Maternal-Fetal Medicine Special Statement: Checklist for postpartum discharge of women with hypertensive disorders.
. Our focus group results suggest that counseling should take place within the first year postpartum, which is in line with recommendations based on the early development of vascular risk factors in the first 1-3 years postpartum
Most participants in our study favoured care by a healthcare provider who was knowledgeable in HDP, however they also highlighted the importance of continuity and collaboration in specialist/primary care and antepartum/postpartum care for ongoing follow-up. Previous work has demonstrated challenges in coordinating postpartum care in this population
. Novel health delivery models including the use of virtual care, may enable closer integration of primary and specialist care that may help overcome these challenges. Education to primary care practitioners on CVD-risk reduction in HDP survivors is another proposed solution
. Coordinated pathways of virtual care have the potential to meet the needs of women in rural or remote communities as well. Further research is warranted to determine outcome-based effectiveness of healthcare provider education in this area.
The majority of participants self-reported a history of mood symptoms in the postpartum period. People with HDP may be at increased risk of developing postpartum anxiety, depression and PTSD
. Participants in our study highlighted the importance of mental health support when considering the nature and timing of counselling regarding physical health concerns. Perinatal mental health services transitioned largely to virtual during the COVID-19 pandemic, with emerging data showing high patient satisfaction with virtual care delivery
. Further research is warranted on virtual and in-person perinatal mental healthcare in people with HDP, and the impact this might have on postpartum health behaviour modifications.
The results of this study must be taken in consideration of limitations in the study design. We did not objectively assess changes in health behaviours due to the qualitative nature of the study. Previous research has shown mixed results in achieving positive health behaviour change in similar populations using longer-term interventions than the one used in our study
. Our study is limited in generalizability given participants were mainly White and highly educated. This is particularly important given data showing racial and ethnic disparities in postpartum follow-up rates
. Future work is needed including engagement with local communities to better outline the patient experience in a diverse population and highlight the important socio-demographic factors which may impact postpartum follow-up care. Given the timing of the virtual consults in our study, participants may have already experienced virtual healthcare in the context of the COVID-19 pandemic, potentially informing their experience in our study. Participants also self-identified for the study, which may suggest a bias toward a more motivated or resourced subset of this patient group. There is some data suggesting that this may be a generally motivated population, for example, very high adherence to a mobile health intervention has been demonstrated in the antepartum period
In summary, we have demonstrated the feasibility and participant satisfaction of the combination of an educational website and virtual consult to facilitate counselling in people affected by HDP. This qualitative study highlights important factors to consider in designing postpartum CVD prevention programs, such as mental health support, individualized timing of visits, and coordinated care pathways. Future work is needed to evaluate the effectiveness of education and counselling in the postpartum period on the development of cardiovascular risk factors and cardiovascular disease.
Acknowledgements
The authors would like to thank patient partners Jaymee Davis and Anonymous for their feedback and contributions to the Her-HEART website.
References
Butalia S
Audibert F
Cote AM
Firoz T
Logan AG
Magee LA
et al.
Hypertension Canada's 2018 Guidelines for the Management of Hypertension in Pregnancy.
Niu B, Mukhtarova N, Alagoz O, Hoppe K. Cost-effectiveness of telehealth with remote patient monitoring for postpartum hypertension. The journal of maternal-fetal & neonatal medicine : the official journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstetricians. 2021:1-7.
ST has received unrestricted grant and in-kind support from KMH Cardiology Clinics, consulting fees from AstraZeneca, and educational program support from Amgen, AstraZeneca, BMS, Bayer, Boehringer Ingelhaim, Janssen, Lilly, Novartis, Novo Nordisk, Pfizer and Sanofi Genzyme.
KN funding support from the Canadian Institutes of Health Research and Heart & Stroke for the Women’s Heart and Brain Health Mid-career Research Chair.
The remaining authors have no disclosures.
Contribution to Authorship
LD, KN, and ST contributed to the conception and design of the study. LD, KP and ST contributed to the content of the website. LD, SG, and KN discussed the content of the virtual consult. LD and ST applied for ethics approval and funding for the project. LD and LB determined the content of the focus groups. LB conducted the focus groups. LD, LB conducted analysis of the data with coding subsequently checked by KP and SG. All authors contributed to the content of this manuscript.
Details of Ethics Approval
The procedures of this study received ethics approval from the Research Ethics Board at Sunnybrook Health Sciences Centre in Toronto, Ontario, Canada. Project identification number 403-2019, dated January 23, 2020
Funding
This study was funded by the Preeclampsia Foundation of Canada’s 2019 Vision Grant
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