Little data exist with regard to the effect of peripartum cardiomyopathy (PPCM) on quality of life. The aim of this study was to determine the impact of PPCM on quality of life and emotional well-being. We sought to determine the feasibility of using social media to perform quality of life research. We conducted a study using a survey distributed to established members of “Peripartum Cardiomyopathy Survivors” support group on the social networking site Facebook. A total of 116 women completed the survey (age 36 ± 6.4 years; 91% white, 75% married, 46% college educated), with 4.9 ± 0.5 years (range 0.02 to 24 years) since the initial diagnosis. Most women (41%) never returned to their baseline level of activity, and 28% discontinued their job because of the diagnosis. Most respondents (56%) were not limited or only slightly limited by heart failure symptoms over the past 2 months. Most respondents (56%) never returned to their baseline emotionally after the diagnosis of PPCM, and most patients (73%) were dissatisfied with their current level of heart failure symptoms. Most patients (67%) felt discouraged frequently (more than several times per month) because of heart failure. Only 26% of women were satisfied with the counseling they received from their providers. The emotional and physical burden of PPCM on young mothers with PPCM years after the diagnosis is striking. Identifying strategies that promote better emotional health and potential treatment strategies may be required.
The effect of peripartum cardiomyopathy (PPCM) on quality of life and emotional status of young women has not been previously explored. Little is known about quality-of-life measurements of living with cardiomyopathy and heart failure symptoms, how the disease has affected their lives, or young women’s perceptions of the counseling that they received. Understanding the emotional and quality-of-life impact on survivors of PPCM from their perspective, a population of mainly younger women with a disease of unknown cause, may provide insights into opportunities to improve their quality of life and emotional status. To address these gaps in knowledge, we conducted a survey of self-identified survivors of PPCM through an online support group using social media. Because of the uncommon nature of PPCM, prospectively identifying a sizable number of patients with PPCM to determine quality-of-life measurements would be challenging. With the expansion of younger people using social media, patients often turn to online support groups for information and advice. The emotional, psychological, and physical burden of PPCM on young mothers has not been previously explored. Because the quality of life and mental health of mothers’ matter to their children, families, and society, we chose to focus on how PPCM affected the lives of women with PPCM.
Methods
We conducted a quality of life study of women self-identified as PPCM by asking members of an established support group for women with PPCM on the social networking site Facebook, “Peripartum Cardiomyopathy Survivors” ( https://www.facebook.com/ppcmPERIPARTUMCARDIOMYOPATHY/ ), to participate in our study. Facebook operates as an international online social media platform independent of any government, medical, or hospital organization. For part of the survey, we chose a qualitative approach because we were interested in capturing essential aspects of a phenomenon that is difficult to measure quantitatively using open-ended questions. Some of the more widely used quality-of-life assessment tools for heart failure may not be patient centered enough. Women with a self-reported previous or current diagnosis of PPCM were included in the study. Confirmation of the diagnosis was not obtained. Women aged <18 years, those unable to provide informed consent, and those who refused to participate were excluded. The survey was open from August 28, 2015, to November 17, 2015 ( https://stonybrookuniversity.co1.qualtrics.com/SE/?SID=SV_baeqcjV4Jcsh49v ). A link to the survey and short description about its purpose and target audience were posted on Facebook and on 3 additional occasions as “reminder” postings. Informed consent was obtained through the link. A participant could access the survey only once. Confidentiality was maintained at all times. No Internet Protocol addresses, names, or other identifiers were collected. Institutional review board approval was obtained before initiation of the study.
The questionnaire ( Appendix A ) was administered using a Web-based platform Qualtrics Research Suite (Qualtrics, Provo, Utah) stored on a secure remote server. We conducted a 21-item survey with questions pertaining to the patient’s information, such as age, educational level, race, marital status, months/years since diagnosis, and occupational status. We assessed whether patients perceived that they received adequate counseling by health care providers. In an adaptation of questions from the Kansas City Cardiomyopathy Questionnaire to patients with PPCM, we assessed items pertaining to patients’ active symptoms (such as fatigue and shortness of breath) and physical findings such as lower-extremity swelling. Information regarding patients’ emotional and psychological status at the time of diagnosis and recently (within the past 2 months) was recorded. Questions regarding current active medical therapy and knowledge of severity of left ventricular function (left ventricular ejection fraction [EF]) at the time of diagnosis and at the time of survey participation were included. Completion of the survey took approximately 10 to 15 minutes.
Data were collected and analyzed using Qualtrics Research Suite Reporting 2.0 Software. Data were summarized by descriptive statistics. Continuous variables were expressed as mean (±SD) and categorical as frequency (%). Open-ended and free-text responses were evaluated individually and categorized as applicable. At the time of survey inception, the PPCM Survivors Support group had 1,258 members on Facebook.
Results
A total of 120 women began the survey questionnaire and 116 completed the survey ( Table 1 ; 3.33% attrition rate; age of the survey population 36 ± 6.4 years; 91% white; and 75% married). The survey was posted for a total of 82 days. These women reported 4.9 ± 0.5 years (range 0.02 to 24 years) since the initial diagnosis, with most patients >1 year since the diagnosis. Most participants graduated from college or had postgraduate degrees. Most participants reported being employed full time compared to part time, and a substantial portion were not employed.
| Variable | PPCM Survivors (n=116) |
|---|---|
| Age (years ± SD) | 36 ± 6.4 |
| Race | |
| White | 106 (91%) |
| Black | 2 (2%) |
| American Indian/Alaska Native | 1 (1%) |
| Asian/Pacific Islander/East Indian | 3 (3%) |
| Hispanic | 1 (1%) |
| Other | 2 (2%) |
| Do not know | 1 (1%) |
| Years since initial diagnosis (years ± SD) | 4.9 ± 0.5 |
| < 1 month since diagnosis | 1 (1%) |
| 1 month – 1 year | 24 (22%) |
| 1 to 3 years | 26 (24%) |
| >3 years | 56 (52%) |
| Marital Status | |
| Married | 87 (75%) |
| Divorced | 7 (6%) |
| Separated/widowed | 0 |
| Lived as married/Live with partner | 13 (11%) |
| Single (never married) | 7 (6%) |
| Other | 2 (2%) |
| Education Level | |
| 12 th grade or less | 8 (7%) |
| Some college or vocational school | 28 (24%) |
| College Graduate | 53 (46%) |
| Post graduate degree | 25 (22%) |
| Other | 2 (2%) |
| Currently Employed | |
| Full time | 51 (44%) |
| Part time | 19 (16%) |
| No employment | 46 (40%) |
Twenty-eight percent of women discontinued their job because of the diagnosis of PPCM ( Table 2 ). Participants reported struggling with many negative emotions at the time of their initial diagnosis, including feeling fearful or scared, confused with regard to the diagnosis and its consequences, depressed and hopeless, or desperate. A small percentage had positive attitude from the beginning and answered that they felt that everything will resolve eventually. Comments were included in a free-text portion regarding the emotional impact at the time of diagnosis:
“Angry it wasn’t diagnosed sooner”, “Too sick to care”, “Like I aged 50 years overnight, instead of thinking about when to have our next child I was setting up cardiologist appointments”, “I felt this is a death sentence … I sought The Lord that moment I needed his saving grace and questioned eternity”, “Relieved they figured out what was wrong and sad about not breastfeeding and maybe not having other babies”, “Determined to overcome and not let this control my life”, “Grateful to be alive. I woke up 3 days later in the CICU on life support”, “Depressed because my baby died”, “In shock”, “Overwhelmed” and “Numb”.
| PPCM Survivors (n=116) | |
|---|---|
| Discontinuation of work secondary to PPCM | 33 (28%) |
| Feelings at the time of diagnosis of PPCM | |
| Depressed | 56 (51%) |
| Hopeless | 47 (43%) |
| Did not feel anything | 2 (2%) |
| Confused | 71 (65%) |
| Desperate | 20 (18%) |
| Fearful/Scared | 92 (84%) |
| Felt that everything will be fine eventually | 13 (12%) |
| Disappointed | 39 (35%) |
| Other | 20 (18%) |
| Over the past 2 months, how often have you felt discouraged because of heart failure? | |
| Never | 13 (12%) |
| Rarely | 24 (21%) |
| 2-3 Times a Month | 28 (24%) |
| Once a Week | 16 (14%) |
| 2-3 Times a Week | 16 (14%) |
| Daily/All the time | 16 (14%) |
| Over the past 2 months, how many times has fatigue limited your ability to do usual activity? | |
| All the time | 13 (12%) |
| Several times a day | 18 (17%) |
| At least once a week | 8 (7%) |
| 3 or more times per week | 13 (12%) |
| 1-2 times per week | 19 (18%) |
| Less than once a week | 10 (9%) |
| Never over the last 2 weeks | 26 (24%) |
| Over the past 2 months, how bothersome was swelling in your feet, ankles or legs? | |
| Extremely bothersome | 0 |
| Quite a bit bothersome | 2 (2%) |
| Moderately bothersome | 6 (6%) |
| Slightly bothersome | 22 (21%) |
| Not at all bothersome | 15 (14%) |
| I have had no swelling | 62 (58%) |
| Compared with 2 months ago, how much the symptoms of heart failure (shortness of breath, fatigue or ankle swelling) have changed? | |
| Much worse | 1 (1%) |
| Slightly worse | 11 (10%) |
| Not changed | 33 (31%) |
| Slightly better | 7 (6%) |
| Much better | 13 (12%) |
| No symptoms over the last 2 months | 43 (40%) |
Most women stated that they never returned to their baseline activity after the diagnosis ( Figure 1 ), whereas 34% resumed their regular activity by 6 months. Many women reported that they always feel fatigued or several times during the day ( Table 2 ). With regard to the symptoms of heart failure within the past 2 months, 40% recorded that they had no symptoms and 12% that the symptoms improved significantly. However, 31% of women revealed that their symptoms had not changed.
For the question “How much does heart failure affect lifestyle in regards to working, household chores, or caring for family over prior 2 months” ( Figure 1 ), most women revealed that either they were slightly limited or not limited at all. Seventeen percent were moderately limited, and 7% were severely limited. However, the vast majority of patients surveyed had an EF that was >45% ( Figure 1 ).
In regard to their emotional recovery, the vast majority never returned to baseline and others after more than 1 year. Few recovered emotionally after 2 to 6 months and after 1 to 2 months ( Figure 2 ). To the question of how they would feel if they had to spend the rest of their life with the current symptoms of heart failure ( Figure 2 ), 37% responded that they would be somewhat dissatisfied, whereas 36% would be significantly disappointed, and only 27% felt satisfied living with current symptoms. Emotionally, over the past 2 months ( Table 2 ), 1/3 felt either never or rarely discouraged by heart failure symptoms. Many felt pessimistic from symptoms 2 to 3 times/month or more often. Fourteen percent of women reported discouraged all the time or every day of the week.
