Long-term health-related quality of life and burden of disease after intensive care: development of a patient-reported outcome measure

Abstract

Background ICU survivorship includes a diverse burden of disease. Current questionnaires used for collecting information about health-related problems and their relation to quality of life lack detailed questions in several areas relevant to ICU survivors. Our aim was to construct a provisional questionnaire on health-related issues based on interviews with ICU survivors and to test if this questionnaire was able to show differences between ICU survivors and a control group. Methods Thirty-two ICU survivors were identified at a post-ICU clinic and interviewed at least six months after ICU discharge. Using an established qualitative methodology from oncology, all dysfunctions and disabilities were extracted, rephrased as questions and compiled into a provisional questionnaire. In a second part, this questionnaire was tested on ICU survivors and controls. Inclusion criteria for the ICU survivors were ICU stay at least 72 h with ICU discharge six months to three years prior to the study. A non-ICU-treated control group was obtained from the Swedish Population Register, matched for age and sex. Eligible participants received an invitation letter and were contacted by phone. If willing to participate, they were sent the questionnaire. Descriptive statistics were applied. Results Analysis of the interviews yielded 238 questions in 13 domains: cognition, fatigue, physical health, pain, psychological health, activities of daily living, sleep, appetite and alcohol, sexual health, sensory functions, gastrointestinal functions, urinary functions and work life. In the second part, 395 of 518 ICU survivors and 197 of 231 controls returned a completed questionnaire, the response rates being 76.2% and 85.3%, respectively. The two groups differed significantly in 13 of 22 comorbidities. ICU survivors differed in a majority of questions (p ≤ 0.05) distributed over all 13 domains compared with controls. Conclusions This study describes the development of a provisional questionnaire to identify health-related quality of life issues and long-term burden of disease after intensive care. The questionnaire was answered by 395 ICU survivors. The questionnaire could identify that they experience severe difficulties in a wide range of domains compared with a control group. Trial registry ClinicalTrials.gov Ref# NCT 02767180

Development of the support needs after ICU (SNAC) questionnaire

“…Additionally, it would be interesting to examine support needs and self‐efficacy, as greater self‐efficacy has been associated with recovery after ICU 40 . Other new questionnaires are evolving which could assess long‐term health‐related quality of life after ICU and measure recovery 38,47 . Importantly, needs‐driven care should be based on patients' perceptions of need.…”

“…We used an iterative and robust process to develop a patient-centred questionnaire to identify patient needs To date most services, when evaluated, generally use health-related quality of life measures or changes in physical or psychological morbidity rather than patient-identified needs. 14,38 To our knowledge, this is the first theoretically informed needs assessment questionnaire for ICU patients that can be used at different time points across the recovery trajectory. 4,15,[22][23][24]30 It is patient-focused and self-completed, enabling patients to identify their social support needs across informational, emotional, instrumental, appraisal, and spiritual domains.…”

The Appetite of Patients 12 Months After Intensive Care Unit Discharge is Associated with Depression

“…However, little is known about the studies exploring appetite loss after discharge from the intensive care unit (ICU). An observational cohort study reported a high prevalence of appetite loss in patients discharged from the ICU compared to in age-and sexmatched non-ICU-treated patients [5]. However, this study has some limitations.…”

Letter to the editor

“…We read with interest the paper by Dr. Malmgren and co-workers addressing the issue of health-related quality of life (HRQoL) in former ICU patients [ 1 ]. We congratulate the authors for their excellent work, and especially in developing a questionnaire more adapted to depict effects on important areas of HRQoL in ICU patients.…”

“…Finally, what can then be concluded from this study [ 1 ] with respect to constructing the questionnaire and what can be said about HRQoL in former ICU patients? The imbalance between comorbidities and socio-economic factors between the ICU and control cohorts diminishes the possibility to make robust conclusions regarding the critical care event itself and its potential effects on HRQoL.…”