Validation of a measure of family experience of patients with serious illness: the QUAL-E (Fam).

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2014-12

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Abstract

Context

Family members of seriously ill patients experience significant burden as they advocate with providers and participate in key decisions for loved ones. Most assessments focus on patient experience, yet family members' own quality of experience is central to comprehensive care.

Objectives

This study validated a measure of the quality of family experience, the QUAL-E (Fam), in palliative care.

Methods

We enrolled family members of terminally ill patients admitted to general medicine services at two hospitals. Items were based on foundational work originally done for the patient instrument, QUAL-E, and interviews of family members of terminally ill patients. Cognitive interviewing was used to refine items, which then underwent formal testing factor analysis. In the first sample, we assessed factor structure. A subsequent sample established predictive validity and test-retest reliability.

Results

The initial item pool was reduced to a four-domain, 35-item scale and administered to the validation sample. Further analyses produced a final brief scale comprising 17 items, demonstrating appropriate convergent and divergent validity. Test-retest reliability demonstrated expected levels of stability in a highly changeable population. The scale provides an assessment of family experience and includes subscales assessing relationship with health care provider and completion. Additional scale items assess symptom experience and issues of preparation.

Conclusion

The QUAL-E (Fam) is a companion instrument to the patient QUAL-E measure of quality of life at the end of life and is part of a package of assessment tools that can help evaluate the entire patient experience and contribute to quality care.

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Published Version (Please cite this version)

10.1016/j.jpainsymman.2014.04.006

Publication Info

Steinhauser, Karen E, Corrine I Voils, Hayden B Bosworth and James A Tulsky (2014). Validation of a measure of family experience of patients with serious illness: the QUAL-E (Fam). Journal of pain and symptom management, 48(6). pp. 1168–1181. 10.1016/j.jpainsymman.2014.04.006 Retrieved from https://hdl.handle.net/10161/29992.

This is constructed from limited available data and may be imprecise. To cite this article, please review & use the official citation provided by the journal.

Scholars@Duke

Steinhauser

Karen E. Steinhauser

Professor in Population Health Sciences

Dr. Steinhauser's primary interests are end-of-life care, medical sociology and patient-provider relationships. Specifically, she investigates the composition and measurement of the quality of life for patients and their families at the end of life. Dr. Steinhauser is a Health Scientist with the Center for Health Services Research in Primary Care, VA Medical Center, Durham; Professor, Department of Population Health Science and Medicine; Senior Fellow with the Duke University Center for Aging; Associate Chief for Research, Duke Palliative Care, and Director, Duke Residency Professional Development Coaching Program. 

Karen E. Steinhauser, PhD is a social scientist dedicated to improving quality of life of patients, families, and providers during serious illness.  She is a Health Scientist with the Center for Health Services Research in Primary Care, VA Medical Center, Durham and Professor, Department of Medicine, Duke University Medical Center, Senior Fellow with the Duke University Center for Aging, and a former VA Career Development Awardee. 

Karen Steinhauser, PhD, is Professor, Departments of Population Health Sciences and Medicine, Duke University Medical Center and Senior Fellow with the Duke University Center for Aging and Health Scientist with the Center for Health Services Research in Primary Care, VA Medical Center, Durham. Her research is dedicated to improving patient and family psychosocial and spiritual care, in serious illness. She has developed measurement tools to assess patient and family quality of life as well as psychosocial interventions to improve the experience of serious illness for patients and those who care for them. Dr. Steinhauser's research has used qualitative and qualitative methods, observational, trial and implementation research.  Her latest work includes: developing a measure to assess the spiritual needs in palliative care, and addressing clinician resilience in palliative care. She serves as Associate Chief of Research for Duke Palliative Care, Director of the Duke Residency Professional Development Coaching program and Vice Chair of Faculty Development for Population Health Sciences. She has been a long-term member of AAHPM, having served on the research committee and being the 2015 Awardee for Excellence in Scientific Research in Palliative Care. She is the Director of Duke’s Residency Professional Development Coaching Program and Vice Chair for Faculty Development, Department of Population Health Sciences



Area of expertise: Palliative Care, Qualitative Research

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