Study explores perspectives of patients and their families during and after critical illness

The outcomes that matter to patients and their families may not mirror the metrics commonly used by healthcare professionals to evaluate the quality of care, according to a study published in American Journal of Critical Care.

Most evaluations of the care provided while a patient is critically ill measure mortality rates, lengths of stay, number of ventilator-free days, infection rates and other data from the patient's health record. Efforts following discharge from an intensive care unit (ICU) often address physical and cognitive functioning, depression and grief. With the growing number of ICU survivors, research has shifted toward understanding and improving post-ICU outcomes and what it means to provide high-quality patient- and family-centered care (PFCC).

"What Matters to Patients and Their Families During and After Critical Illness: a Qualitative Study" explores the perspectives of patients and family members who experienced critical illness. The findings offer insights into patients' and families' priorities for quality metrics during the ICU stay and post discharge outcomes. While this study was performed prior to COVID-19, the findings are especially relevant today given the extraordinary numbers of patients experiencing critical illness due to the viral pandemic.

For the study, researchers from the Palliative and Advanced Illness Research (PAIR) Center at Penn Medicine conducted hourlong semi structured interviews with individual ICU survivors, as well as family caregivers of patients who survived and of patients who died. A content analysis of the transcripts identified aspects of the ICU experience affiliated with quality care from the patients' and families' perspectives, as well as important post discharge outcomes.

Communication, patient comfort and sensing the medical team provided exhaustive care were identified as essential aspects of the ICU experience indicative of quality care. The researchers noted that the time and effort providers put into communicating with patients was highly valued and often led patients to feel less alone and afraid. Communication and patient comfort, two processes of care that are highly dependent on attentive and quality bedside nursing, were especially important during the ICU experience.

When asked about important post-ICU outcomes, participants consistently identified survival, quality of life, physical functioning and cognitive functioning as key post discharge outcomes. For approximately 25% of participants, survival alone was the most important outcome, but for most study participants, some outcomes were deemed worse than death, including the inability to communicate, having severe physical disability or dependence on machines, and living with severe or constant pain.

Lead study author Catherine L. Auriemma, MD, is a pulmonary and critical care fellow in the division of Pulmonary, Allergy and Critical Care at the Hospital of the University of Pennsylvania, and Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia.

Most research has evaluated the impact of interventions or focused on the perspectives of clinicians, rather than those of patients and family members. Less is known about the experiences and values of ICU patients who survive, those who die and their family caregivers. To promote patient-centered, evidence-based care, we need to embrace a more diverse approach to measuring outcomes that matter long-term."

Catherine L. Auriemma, MD, Lead Study Author, Pulmonary and Critical Care Fellow, Division of Pulmonary, Allergy and Critical Care Hospital, University of Pennsylvania

The initial recruitment process identified a pool of 102 eligible patients and families, and interviews were completed with 19 ICU survivors. Of the final sample of 30 family members, 18 were family members of survivors and 12 were family members of patients who died.

Interviews took place at least seven days after hospital discharge for ICU survivors and at least 30 days after a patient's death for families of deceased patients. The study was conducted between December 2012 and November 2013 at an academic medical center in Philadelphia.