Quality of life in patients treated for infective endocarditis

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1 Quality of life in patients treated for infective endocarditis Trine Bernholdt Rasmussen RN, MScN, PhD fellow Copenhagen, Denmark Rigshospitalet, Gentofte Hospital Declaration of interest: None THE HEART CENTRE

2 What is Health Related Quality of Life? Definition: People s subjective evaluations of the influences of their current health status, health care and health promoting activities on their ability to achieve and maintain a level of overall functioning that allows them to pursue valued life goals and that is reflected in their general well-being. Shumaker & Berzon, 1995

3 Claim Patients who have suffered from IE have severely impacted Quality of Life for an extended period of time after end of treatment Studies exploring interventions to improve outcomes are needed

4 Agenda for presentation Background Quantitative findings Qualitative findings Survey results Perspectives

5 An infection of the Background Infective endocarditis Heart-valves (and/or surrounding structures) Related to implantable cardiac devices High mortality 12-25% in-hospital, up to 40 % 1 year post discharge Incidence 2 to 10 per persons/year and increasing Requires lengthy hospitalization (1) Habib G, Hoen B, Tornos P, Thuny F, Prendergast B, Vilacosta I, et al. Guidelines on the prevention, diagnosis, and treatment of infective endocarditis (new version 2009): the Task Force on the Prevention, Diagnosis, and Treatment of Infective Endocarditis of the European Society of Cardiology (ESC). Endorsed by the European Society of Clinical Microbiology and Infectious Diseases (ESCMID) and the International Society of Chemotherapy (ISC) for Infection and Cancer. Eur Heart J 2009; Oct;30(19): (2) Danish Society of Cardiology. [Infective Endocarditis: Diagnosis and Treatment]. Copenhagen, Denmark, DCS; Accessible at: (3) Fedeli U, Schievano E, Buonfrate D, Pellizzer G, Spolaore P. Increasing incidence and mortality of infective endocarditis: a population-based study through a record-linkage system. BMC Infectious Diseases 2011;11(1):48.

6 Follow-up after a specific surgical intervention Follow-up time months HRQL - SF-36, n=40

7 Physical Role functioning (RP) General Health (GH) Vitality (VT) Mental Health (MH) After months compared to an age- and sex-matched general population NS in the collective scores

8 n = 67 HRQL - SF-36 after 12 months PTSD after 12 months Selected symptoms after 3 and 12 months Employment status after 3 and 12 months

9 Vitality General Health Pain Physical role functioning Physical functioning After 12 months compared to an age- and sexmatched general population 11% showed signs of PTSD NS in the collective scores

10 Not returned to work: 3 m - 48% 12 m - 35% 40 hours/week < IE 3 m - 20 h/week 12 m - 37 h/week

11 Qualitative findings Physical deconditioning, fatigue, muscle weakness Lingering illness, memory- and concentration problems Emotional instability, impaired sleep quality Altered perception of body and self Importance of loved ones Lack of support from health care professionals Rasmussen TB et. al. Insufficient living patient experiences of life after infective endocartis (manuscript in progress)

12 Survey - Flow chart Patients > 18 years, hospitalized for infective endocarditis in Denmark Jan 1 st to Jun 30 th 2011 n =351 Dead, n = 104 (29,6 %) Address unavailable, n = 37 (10,5 %) Eligible responders n = 210 (59,8 %) Respondents (repeated mailing) n = 122 (58,1 %) Age, mean Male-to female ratio 1 : 2,7 Non-responders, n = 88 (41,9 %) Women Unmarried Co-morbidities Younger

13 SF-36, EQ-5D and HeartQoL p < 0, p < 0,05 ns p < 0, Physical Mental component scale component scale (mean) (mean) EQ5D (100*mean) HeartQol (10*mean) General population Heart valve replacement Infective endocarditis

14 Hospital Anxiety and Depression Scale ,6 p < 0,05 HADS - Anxiety Heart valve replacement HADS score > 8 p < 0,05 24,4 22,5 16,8 HADS - Depression Infective endokarditis

15 Conclusions Impacted HRQL and affected physical functioning. Evidence gap: Components influencing Health Related Quality of Life in patients Interventions to improve adverse outcomes.

16 PRE-STUDIES CopenHeartIE Trial Survey-based pre-study QUAN Before RCT (n=122) Qualitative pre-study QUAN premeasures Intervention (n=150) QUAN post-measures qual Before RCT (n=11) QUAN = Quantitative data qual = Qualitative data

17 Contact information: Research group: Selina K. Berg, Postdoc, RN, MScN, PhD, FESC. Philip Moons, Prof., RN, MScN, PhD. Ann-Dorthe Zwisler, MD, PhD. Henning Bundgaard, MD, PhD. THE HEART CENTRE

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