Patients’ experiences when afflicted by takotsubo syndrome – is it time for guidelines?

Abstract

Background Takotsubo syndrome (TTS) is an acute and reversible type of heart failure that shares common features with acute coronary syndrome. It is usually caused by psychological or physical stress, but for a third, triggers cannot be identified. Patients also suffer from residual symptoms and decreased mental health in the recovery phase and may struggle to comprehend and manage everyday living. Aim To describe patients' experiences when afflicted by takotsubo syndrome, after discharge from hospital. Method An inductive explorative design using a qualitative approach with semi‐structured individual interviews. The text was analysed using qualitative content analysis according to Graneheim and Lundman. Result Ten women and one man afflicted by TTS were interviewed two to twelve months after discharge. Six sub‐categories were identified, and a main category emerged: The process from symptom onset and understanding to increased awareness and changes in life. The patients suffered from emotional reactions and they sought answers and understanding about the underlying causes. The disease led to changes in patients' daily lives as they were affected physically and psychologically. Spouses and/or bystanders had a positive supporting role, but the patients desired more support from the healthcare professionals such as an earlier appointment for follow‐up with a nurse. Conclusion Being afflicted by TTS can lead to changes in life conditions but these changes vary among patients. Becoming ill was associated to acute physical stress and prolonged psychological stress and they suffered from emotional reactions. The follow‐up care needs to improve as the patients need more guidance from healthcare professionals and earlier appointment for follow‐up with a nurse. A structured and multiprofessional treatment with a person‐centred approach could support patients in their recovery.

“Please keep on beating”—Participation in a Creative Workshop Offers Unexpected Benefits to Women With Takotsubo Cardiomyopathy

“…What was particularly striking was the lack of psychological support offered to any of the women. While there are recommendations for monitoring and treatment of physical symptoms of TCM, 24 and increasing recognition of the role that psychological stressors play in the etiology of TCM, 25 , 26 there are no guidelines of which we are aware for provision of psychological support for this patient group, which is a surprising gap. Participants clearly articulated their need for support to help them deal with the stressor that precipitated the onset of TCM but also to manage their anxieties about TCM itself.…”

Women's Initial Experiences and up to a Year in Retrospect of Their Life Situation With a Confirmed Takotsubo Syndrome Diagnosis: A Single Case Study Literature Review

“…Medical follow-up after a few months often showed sufficient return of systolic function with normal ejection fraction, and accordingly positive results from a medical-patient care perspective. However, follow-up from a nursing person-centered perspective comprising secondary preventive care in general, and health promotion care in particular, is still inexplicably lacking (Mäenpää et al, 2020; Sundelin et al, 2020; Wallström et al, 2019).…”

“…However, from a nursing person-centered perspective with a holistic approach (Ekman et al, 2011; Santana et al, 2018; Sarvimäki & Stenbock-Hult, 1992), the presentation in manifestations of reason, will, feelings, and needs (Curragh et al, 2020) shows an obviously sensitive and powerless elderly woman whose entire life situation is unmanageable and in complete imbalance (Dahlviken et al, 2015; Sundelin et al, 2020; Wallström et al, 2016a). Accordingly, if no such information exists it is difficult for a cardiac nurse or team to be able to assess what knowledge the person needs and further, to know how to help her understand the situation and make best practice healthcare choices in line with suggested health literacy actions (Mäenpää et al, 2020; Sørensen et al, 2018).…”

“…The first 30 years of knowledge on TS from a medical patient-centered care perspective (Dote et al, 1991) show that today's best TS practice is based on consensus and position statement papers (Ghadri et al, 2018a(Ghadri et al, , 2018bLyon et al, 2016), but guidelines have yet to be developed. At the same time, the best practice from a nursing personcentered perspective (Ekman et al, 2011;Santana et al, 2018), including the person's own statements of reasons, feelings, and needs (Curragh et al, 2020) in order to establish a partnership followed by shared decision making and understanding (Morgan & Yoder, 2012), is only based on five empirical Scandinavian TS studies with an explorative approach (Dahlviken et al, 2015;Mäenpää et al, 2020;Sundelin et al, 2020;Wallström et al, 2016aWallström et al, , 2016b. A case study that includes a personcentered and holistic approach to a person's life is another way of exploring close, in-depth, and detailed patient-reported outcomes and knowledge in a defined context to generate and illustrate theories and models that describe how different aspects of a person's life interact (Ebneyamini & Sadeghi Moghadam, 2018;Stjelja, 2013;Yin, 2009).…”

“…The person is his/her own expert on the body, mind, and spirit, while best practice managed by cardiac nurses is based on a partnership built on statements representing interaction (Curragh et al, 2020). This is a prerequisite for providing person-centered care to a person with a confirmed TS diagnosis, particularly after a hospital stay, in order to ensure sound recovery and preventive measures (Mäenpää et al, 2020;Sundelin et al, 2020;Wallström et al, 2016bWallström et al, , 2019.…”