Understanding patients' experiences of recovery after staged complex aortic repair: A phenomenological study.

AIM: To explore patients' with complex aortic diseases lived experiences of recovery between and after staged endovascular aortic repair (EVAR) procedures, including adjunctive open surgery. DESIGN: Qualitative descriptive phenomenological design, applying person-centred care and lifeworld-led health care. METHODS: Patients operated on in a staged fashion between 2012-2017 were invited to participate. Six participants underwent in-depth interviews 1-5 years postoperatively. The interviews were analysed using descriptive phenomenological method. FINDINGS: The essence of the patients' experiences was described as: a necessary, overwhelming, hard, and prolonged process with life changing consequences. Between the operations: expected tiredness where life goes on as usual and insufficient time for recovery. Short-term after all operations: overwhelming tiredness, pain and complications, mostly from neurological deficits. Losing 'yourself' and struggling to manage daily life one day to another. Long-term after all operations: gradually recovering back to 'yourself' and having to accept life with permanent setbacks and limitations. CONCLUSION: Patients with complex aortic diseases struggle with physical and psychological setbacks, continuing years after their operations. There is a need to prospectively assess different aspects of these patients' recovery, identify those with impaired recovery and establish preventive and supporting strategies. IMPACT: Patients' experience of recovery after staged aortic repair has not previously been investigated. The findings indicate that these patients struggle with various physical and psychological setbacks continuing years after their operations. These results will inform further research on this group of patients and guide healthcare professionals in the care of these patients in their transition back to recovery.

Patients' health and quality of life after complex endovascular aortic repair: A prospective cohort study.

RATIONALE: Complex endovascular aortic repair often involves multiple major procedures over time with a high risk of complications and little time for recovery. This exposes patients to great stress, both physically and mentally, with potentially long-lasting effects. There is limited knowledge about these effects and who is most at risk - information on this could help vascular nurses and other healthcare professionals anticipate and meet care needs. AIM: To investigate the health and quality of life effects of complex endovascular aortic repair, in relation to patients' demographic and health characteristics. DESIGN: A prospective cohort study. METHODS: Patients undergoing elective complex endovascular aortic repair were consecutively recruited from one university hospital during one year (n=25). Self-report questionnaires on health disability (WHODAS 2.0), quality of life (WHOQoL-BREF) and symptoms of anxiety and depression (HADS) were filled out preoperatively and repeated one and six months postoperatively. Prospective changes in health and quality of life, and associations with patient demographics and preoperative health characteristics, were assessed. Ethical approval was obtained prior to study performance. RESULTS: Overall, patients had significantly greater health disability at one month (WHODAS 2.0 score median 31.5, range 1.1-63.0) than preoperatively (median 13.6, range 0.0-41.3) (n=22, p=.017); the majority had recovered at six months (median 11.4, range 3.3-58.7) (n=18, p=.042). No significant effects were seen in quality of life and symptoms of anxiety and depression (p>.05). However, the participants showed heterogeneity, with certain individuals not recovered at six months (n=8). Factors associated with worse six-month outcomes were being female, age < 70 years, postoperative complications, and history of anxiety or depression. CONCLUSIONS: Complex endovascular aortic repair have limited long-term negative effects on patients' health and quality of life. However, some patients are not recovered at six months postoperatively, which could be explained by individual characteristics. To improve recovery outcomes, vascular nurses and other health care professionals should be aware of the possible recovery trajectories and factors associated with impaired recovery, and use them to anticipate and meet the patients' individual care needs.