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The Surrogate Perspective: Quantification of important recovery outcomes after acute disorders of consciousness
Journal article   Peer reviewed

The Surrogate Perspective: Quantification of important recovery outcomes after acute disorders of consciousness

Juliette Copeland, Christopher C. Boivin, Paola Rosa, Caroline S. O'Brien, Melanie Bahti, David Fischer and Catherine L. Auriemma
Journal of pain and symptom management, v 71(6), e1206
Jun 2026
DOI: https://doi.org/10.1016/j.jpainsymman.2026.04.554

Abstract

Onoclogy Psychosocial interventions Quality improvement Symptom management
Neuroprognostication of patients experiencing disorders of consciousness (DoC) often presumes that functional independence is necessary for an acceptable quality of life. To identify the most important recovery outcomes in surrogates of patients admitted to an ICU following an acute DoC and to assess surrogates’ perceptions of patients’ quality of life if recovery outcomes are met versus not met. Participants generated a list of recovery outcomes and scored the importance of each from 0–100. For each participant, outcomes scored 80 or higher were lumped together as “most important.” Participants then rated their loved one’s health on a scale from 0–100 (0=a quality of life as bad as or worse than dying; 100=the best quality of life imaginable) on (1) a typical day before hospital admission, (2) if ALL most important recovery outcomes were achieved, and (3) if NONE of the most important recovery outcomes were achieved. Similar outcomes were grouped into descriptive categories. Importance and health scores were analyzed using summary statistics. Nineteen surrogates participated. The proportion of the sample mentioning each outcome are listed: Functional Independence (94.7%), Communication (89.5%), Hobby (84.2%), Basic Mobility (78.9%), Social Activity (68.4%), Cognitive Capacity (36.8%), Caregiving (31.6%), Volunteering/Work (26.3%), Living at Home (15.8%), Sight (5.3%), Ventilator Liberation (5.3%). The outcomes with the highest and lowest median importance scores were Communication (97.5) and Hobby (60), respectively. Median health score pre-admission was 90 (IQR 75–95) and 90 (80–100) if the most important recovery goals were able to be met (even if other goals were not met). Median health score was 35 (25–50) if the most important goals were not met. While recovery goals varied, Functional Independence and Communication emerged as highly important. Notably, surrogates’ perceptions of patients’ quality of life remained high as long as the most important recovery goals were met.

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