Families and other surrogate decisionmakers for chronically critically ill patients often lack information about patient prognosis or options for care. This study describes an approach to develop and validate a printed information brochure about chronic critical illness aimed at improving comprehension of the disease process and outcomes for patients' families and other surrogate decisionmakers.
Investigators reviewed existing literature to identify key domains of informational needs. Content of these domains was incorporated in a draft brochure that included graphics and a glossary of terms. Clinical sensibility, balance, and emotional sensitivity of the draft brochure were tested in a series of evaluations by cohorts of experienced clinicians (n = 49) and clinical content experts (n = 8) with revisions after each review.
Cognitive testing of the brochure was performed through interviews of ten representative family members of chronically critically ill patients with quantitative and qualitative analysis of responses.
Clinical sensibility and balance were rated in the two most favorable categories on a five-point scale by more than two thirds of clinicians and content experts. After review, family members described the brochure as clear and readable and recommended that the brochure be delivered to family members by clinicians followed by a discussion of its contents. They indicated that the glossary was useful and recommended supplementation by additional lists of local resources. After reading the brochure, their prognostic estimates became more consistent with actual outcomes.
We have developed and validated a printed information brochure that may improve family comprehension of chronic critical illness and its outcomes. The structured process that is described can serve as a template for the development of other information aids for use with seriously ill populations.
From the Departments of Medicine (SSC, LPS, LCH) and Health Behavior and Health Education (MV), University of North Carolina, Chapel Hill, NC; Department of Bioethics (MD), National Institutes of Health Clinical Center, Bethesda, MD; the University of Pittsburgh and Pittsburgh VA Healthcare System (SLC), Pittsburgh, PA; Department of Medicine (CEC), Duke University, Durham, NC; and Department of Medicine (JEN), Mount Sinai School of Medicine, New York, NY.
* See also p. 312.
This work was funded by the Department of Bioethics, National Institutes of Health Clinical Center. The views expressed here are those of the authors and do not necessarily reflect the policies of the US Department of Health and Human Services or the National Institutes of Health.
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The authors have not disclosed any potential conflicts of interest.