title: Quality of Life in Survivors of Peripartum Cardiomyopathy.
abstract: 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.
authors.affiliation: Division of Cardiovascular Medicine, Department of Medicine, State University of New York at Stony Brook, Stony Brook University Medical Center, Stony Brook Medicine, Stony Brook, New York.
authors.forename: Paraskevi
authors.initials: P
authors.lastname: Koutrolou-Sotiropoulou
authors.affiliation: Division of Cardiovascular Medicine, Department of Medicine, State University of New York at Stony Brook, Stony Brook University Medical Center, Stony Brook Medicine, Stony Brook, New York.
authors.forename: Fabio Vasconcelos
authors.initials: FV
authors.lastname: Lima
authors.affiliation: Division of Cardiovascular Medicine, Department of Medicine, State University of New York at Stony Brook, Stony Brook University Medical Center, Stony Brook Medicine, Stony Brook, New York. Electronic address: Kathleen.Stergiopoulos@stonybrookmedicine.edu.
authors.forename: Kathleen
authors.initials: K
authors.lastname: Stergiopoulos
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D009202:Cardiomyopathies / Q000150:complications / Q000503:physiopathology* / Q000523:psychology; D005221:Fatigue / Q000209:etiology / Q000503:physiopathology / Q000523:psychology; D005240:Feasibility Studies; D005260:Female; D006333:Heart Failure / Q000150:complications / Q000503:physiopathology* / Q000523:psychology; D006801:Humans; D020407:Internet; D058725:Peripartum Period; D011247:Pregnancy; D011249:Pregnancy Complications, Cardiovascular / Q000503:physiopathology* / Q000523:psychology; D011644:Puerperal Disorders / Q000503:physiopathology* / Q000523:psychology; D011788:Quality of Life; D020127:Recovery of Function; D062707:Return to Work; D012657:Self-Help Groups; D061108:Social Media; D011795:Surveys and Questionnaires; D017741:Survivors