Patient and family centered actionable processes of care and performance measures for persistent and chronic critical illness: a systematic review

Patient and family centered actionable processes of care and performance measures for persistent and chronic critical illness: a systematic review AUTHORS Louise Rose PhD Department of Critical Care Medicine, Sunnybrook Health Sciences Centre, Toronto, Canada Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK Lawrence S. Bloomberg Faculty of Nursing and Faculty of Medicine, University of Toronto, Toronto, Canada Laura Istanboulian MN Provincial Centre of Weaning Excellence, Michael Garron Hospital, Toronto, Canada Laura Allum MSc Lane Fox Clinical Respiratory Physiology Research Centre, London, UK, National Institute for Health Research Biomedical Research Centre, Guy’s and St. Thomas’ NHS Foundation and King’s College London, London, UK Lisa Burry PharmD Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, Canada Mount Sinai Hospital, Sinai Health System, Toronto, ON, Canada Craig Dale PhD Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada Sunnybrook Health Sciences Centre, Toronto, Canada Nicholas Hart PhD Lane Fox Clinical Respiratory Physiology Research Centre, London, UK, National Institute for Health Research Biomedical Research Centre, Guy’s and St. Thomas’ NHS Foundation and King’s College London, London, UK [email protected] Kalliopi Kydonaki PhD School of Health & Social Care, Edinburgh Napier University, Edinburgh, Scotland Pam Ramsay PhD School of Health & Social Care, Edinburgh Napier University, Edinburgh, Scotland Natalie Pattison PhD East & North Herts NHS Trust, Stevenage, UK School of Health and Social Work, University of Hertfordshire, Hatfield, Hertfordshire, UK/ Florence Nightingale Foundation, London UK Bronwen Connolly PhD Lane Fox Clinical Respiratory Physiology Research Centre, London, UK, National Institute for Health Research Biomedical Research Centre, Guy’s and St. Thomas’ NHS Foundation and King’s College London, London, UK, Centre for Human and Aerospace Physiological Sciences, King’s College London, UK, Department of Physiotherapy, The University of Melbourne, Australia On behalf of the PERFORM (PatiEnt Reported Family Oriented perfoRmance Measures) study investigators: Andre Amaral, Shannon Carson, Christopher Cox, Brian H Cuthbertson, Vagia Campbell, Eddy Fan, Jack Iwashyna, Vincent Lo, Lorrie Hamilton; Tracey Sharon, Deepak Varma) WORK CONDUCTED This work was conducted at the University of Toronto and King’s College London CORRESPONDING AUTHOR Louise Rose, PhD James Clerk Maxwell Building, Rm 1.13 King’s College London, 57 Waterloo Bridge Rd, London, UK, SE1 8WA [email protected] FUNDING This review was funded by the Michael Garron Hospital Community Research Fund, The Canadian Respiratory Health Professionals and the Ontario Respiratory Care Society. Dr. Bronwen Connolly holds a NIHR Post-Doctoral Fellowship, and is supported by the National Institute for Health Research (NIHR) Biomedical Research Centre based at Guy’s and St Thomas’s NHS Foundation Trust and King’s College London. The views expressed are those of the authors and are not necessarily those of the NHS, the NIHR or the Department of Health. KEYWORDS Chronic critical illness; persistent critical illness; quality indicator; process of care; intensive care   ABSTRACT Objective To identify actionable processes of care, quality indicators, or performance measures and their evidence base relevant to patients with persistent or chronic critical illness and their family members including themes relating to patient/family experience. Data Sources Two authors independently searched electronic, systemic review, and trial registration databases (inception to November 2016). Study Selection: We included studies with an ICU length of stay of ≥7 days as an inclusion criterion and reported actionable processes of care; quality improvement indicators, measures or tools; or patient/family experience. We excluded case series/reports of <10 patients. Data Extraction: Paired authors independently extracted data and performed risk of bias assessment. Data synthesis We screened 13,130 references identifying 114 primary studies and 102 relevant reviews. Primary studies reported data on 24,252 participants; median (IQR) sample size of 70 (32-182). We identified 42 distinct actionable processes of care, the most commonly investigated related to categories of (1) weaning methods (21 studies; 27 reviews), (2) rehabilitation, mobilization, and physiotherapy (20 studies; 40 reviews); and (3) provision of information, prognosis and family communication (14 studies; 11 reviews). Processes with limited evidence were generally more patient-centered categories such as communication, promotion of sleep, symptom management, or family support. Of the 21 randomized controlled trials, only two were considered at low risk of bias across all six domains, while just 2 cohort studies and 1 qualitative study were considered of high quality. Conclusion We identified 42 distinct actionable processes of care relevant to patients with persistent or chronic critical illness and their families, with most frequently studied processes relating to weaning, rehabilitation/mobilization, and family communication. Qualitative studies highlighted the need to address psychological needs and distressing symptoms as well as enabling patient communication. Our findings are informative for clinicians and decision-makers when planning high quality patient and family focused care.