Supporting people with Takotsubo syndrome

People who have been diagnosed with Takotsubo syndrome (TTS) generally receive very little (if any) information about TTS in hospital and many describe a sense of abandonment following hospital discharge. In some cases, clinicians have not heard of TTS.

For a  couple of first-hand accounts of the impact of TTS on a person’s life after the diagnosis, read Laura’s story and Ellen’s story.

In a small study comparing women with TTS and women with acute coronary syndrome (heart attack and unstable angina), women with TTS were found to be significantly:

  • less likely to be offered a cardiac rehabilitation program;
  • less likely to receive information about how to manage new medications;
  • less likely be told what to expect in terms of recovery from TTS ;and
  • less likely to be advised on what to do in the case of ongoing symptoms or another episode of TTS.1

When seeking information about TTS (in hospital and following hospital discharge), patients have been told by clinicians to look it up on the internet – hence the creation of the Takotsubo Support Group and this website!

To effectively support people with TTS, clinicians need to learn more about the condition and dispel some of the misconceptions they may hold about TTS.

Takotsubo syndrome is a NOT a rare condition

TTS was not recognised until 1990. Recognition of the syndrome was poor for some time after that, but as awareness has improved, the number of cases reported has grown exponentially. It has been estimated that the prevalence of TTS is approximately 2% (up to 10% if only women are considered) of all patients presenting with suspected acute coronary syndrome.2

Takotsubo syndrome is  NOT a benign condition

Case series and international registries report TTS complication rates of 20%-34.5% and a mortality rate that is comparable to that of ST-segment elevation myocardial infarction (STEMI).3   Templin et al. reported the rate of major adverse cardiac and cerebrovascular events as 9.9% per patient-year, stroke or transient ischemic attack 1.7% per patient-year, and the rate of death 5.6% per patient-year during long-term follow up.4

Takotsubo syndrome is NOT confined to elderly females

TTS occurs most commonly in females over 50 years of age, but has been reported in men, younger women, children and neonates. Unexplained sudden cardiac death may be due to TTS, even in younger people (Wang 2015).5

Emotional stress/distress is NOT the only trigger for Takotsubo syndrome

Physical triggers for TTS are increasingly reported. Of 1750 patients in the International Takotsubo Registry, physical triggers were more frequently present than emotional triggers (36.0% vs. 27.7%),  7.8% of patients had both triggers, and 28.5% had no identified trigger. Emotional triggers were more common among women, whereas physical triggers were more prevalent among men.4

The Takotsubo Wall feature on this website has self-reported data that includes the trigger for TTS. Currently (July 2019) there are 300 entries with the breakdown as follows:

  • Emotional stressor: 107
  • Emotional (happy event): 5
  • Physical stressor: 70
  • Unknown or uncertain: 118 (61 of whom reported a background of chronic or cumulative stress).

In cases where the stressor was uncertain, there may have been a combination of physical and emotional stress and either or the combination of both could have triggered TTS. In the setting of physical illness, emotional stress due to illness cannot be entirely discounted as a trigger.

Chronic stress, anxiety and depression are conditions that have been associated with the development of TTS.4 Studies have found that many people with a stress-related cause of TTS lived in stressful circumstances long before the onset of TTS.6,7

Key Point The popular use of the term ‘broken heart syndrome’ and the characterisation of TTS as a condition associated with lost love or loss of a loved one is also not helpful in TTS being recognised as a serious condition that has many triggers other than emotionally stressful events. Many women with TTS believe that their condition is not taken seriously by clinicians (and the community in general) because of perceived stigma attached to emotional stress, anxiety or other mental health conditions in women.  Experiences shared by members of the Takotsubo Support Group suggest that these beliefs are not unfounded, and this needs to change. Whether the trigger for TTS is an emotional or physical stressor, TTS is potentially a life-threatening condition with potential for ongoing debilitating symptoms and TTS recurrence.

NOT all people with Takotsubo syndrome recover within a few days or weeks

A recently published retrospective observational study8 of 61, 412 patients with TTS found that approximately 12% of patients with TTS were readmitted to hospital within 30 days of the acute event. More than half of all readmissions (64.5%) occurred within the first 2 weeks, 8 perhaps reflecting discharge before resolution of wall motion abnormalities and optimisation of treatment. 9

People with TTS are often told that it is a benign condition from which they will recover in a short time.  For some people, this is the case, but for many, ongoing symptoms of chest pain, breathlessness, debilitating fatigue and palpitations compound fear, anxiety and uncertainty.

Presentations to emergency departments (EDs) with ongoing or new symptoms following a TTS event often result in an unsatisfactory experience.   In some cases, ambulance and ED personnel have never heard of TTS, or if they have, they do not view it as a serious condition. In other cases, people are dismissed as just being anxious. There are many accounts from members of the Takotsubo Support Group (TSG) that detail these experiences and the impact that it has had on them.

Takotsubo syndrome is NOT a single occurrence for many people

Some people do get recurrent TTS, and rarely these are multiple recurrences. Recurrence rates have been estimated to be between 1 and 11.4%,10 but the follow up times have been variable. Fear of recurrence, particularly for those who have had a cardiac arrest or other complications, is a source of anxiety for people with TTS, especially given that there is no preventive therapy and the unpredictable nature of causality.

References

1Schubert, S.C., Kucia, A. and Hofmeyer, A., 2018. The Gap in Meeting the Educational and Support Needs of Women with Takotsubo Syndrome Compared to Women with an Acute Coronary Syndrome. Contemporary Issues in Education Research11(4), pp.133-144. FREE https://files.eric.ed.gov/fulltext/EJ1193205.pdf
2Akashi, Y.J., Nef, H.M. and Lyon, A.R., 2015. Epidemiology and pathophysiology of Takotsubo syndrome. Nature Reviews Cardiology12(7), p.387. doi:10.1038/nrcardio.2015.39
3Redfors, B., Vedad, R., Angerås, O., Råmunddal, T., Petursson, P., Haraldsson, I., Ali, A., Dworeck, C., Odenstedt, J., Ioaness, D. and Libungan, B., 2015. Mortality in takotsubo syndrome is similar to mortality in myocardial infarction—a report from the SWEDEHEART registry. International journal of cardiology185, pp.282-289.
4Templin, C., Ghadri, J.R., Diekmann, J., Napp, L.C., Bataiosu, D.R., Jaguszewski, M., Cammann, V.L., Sarcon, A., Geyer, V., Neumann, C.A. and Seifert, B., 2015. Clinical features and outcomes of Takotsubo (stress) cardiomyopathy. New England Journal of Medicine373(10), pp.929-938.
5Wang, Y., Xia, L., Shen, X., Han, G., Feng, D., Xiao, H., Zhai, Y., Chen, X., Miao, Y., Zhao, C. and Wang, Y., 2015. A new insight into sudden cardiac death in young people: a systematic review of cases of Takotsubo cardiomyopathy. Medicine94(32).
6Wallström, S., Ulin, K., Määttä, S., Omerovic, E. and Ekman, I., 2016. Impact of long-term stress in Takotsubo syndrome: Experience of patients. European Journal of Cardiovascular Nursing15(7), pp.522-528.
7Delmas, C., Lairez, O., Mulin, E., Delmas, T., Boudou, N., Dumonteil, N., Biendel-Picquet, C., Roncalli, J., Elbaz, M., Galinier, M. and Carrié, D., 2012. Anxiodepressive disorders and chronic psychological stress are associated with Tako-Tsubo cardiomyopathy. Circulation Journal, pp.CJ-12.
8Smilowitz, N.R., Hausvater, A. and Reynolds, H.R., 2018. Hospital readmission following takotsubo syndrome. European Heart Journal-Quality of Care and Clinical Outcomes5(2), pp.114-120.
9Kato, K. and Templin, C., 2018. Escape from the takotsubo octopus trap: liberation often temporary and readmission rates high, European Heart Journal – Quality of Care and Clinical Outcomes, 5(2), pp. 88–89, https://doi.org/10.1093/ehjqcco/qcy059
10El‐Battrawy, I., Santoro, F., Stiermaier, T., Möller, C., Guastafierro, F., Novo, G., Novo, S., Mariano, E., Romeo, F., Romeo, F. and Thiele, H., 2019. Incidence and Clinical Impact of Recurrent Takotsubo Syndrome: Results From the GEIST Registry. Journal of the American Heart Association8(9), p.e010753.