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
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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.Type
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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.
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Karen E. Steinhauser
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, and Director of the Duke Residency Professional Development Coaching program. 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.
Area of expertise: Palliative Care, Qualitative Research
Hayden Barry Bosworth
Dr. Bosworth is a health services researcher and Deputy Director of the Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT) at the Durham VA Medical Center. He is also Vice Chair of Education and Professor of Population Health Sciences. He is also a Professor of Medicine, Psychiatry, and Nursing at Duke University Medical Center and Adjunct Professor in Health Policy and Administration at the School of Public Health at the University of North Carolina at Chapel Hill. His research interests comprise three overarching areas of research: 1) clinical research that provides knowledge for improving patients’ treatment adherence and self-management in chronic care; 2) translation research to improve access to quality of care; and 3) eliminate health care disparities.
Dr. Bosworth is the recipient of an American Heart Association established investigator award, the 2013 VA Undersecretary Award for Outstanding Achievement in Health Services Research (The annual award is the highest honor for VA health services researchers), and a VA Senior Career Scientist Award. In terms of self-management, Dr. Bosworth has expertise developing interventions to improve health behaviors related to hypertension, coronary artery disease, and depression, and has been developing and implementing tailored patient interventions to reduce the burden of other chronic diseases. These trials focus on motivating individuals to initiate health behaviors and sustaining them long term and use members of the healthcare team, particularly pharmacists and nurses. He has been the Principal Investigator of over 30 trials resulting in over 400 peer reviewed publications and four books. This work has been or is being implemented in multiple arenas including Medicaid of North Carolina, private payers, The United Kingdom National Health System Direct, Kaiser Health care system, and the Veterans Affairs.
Areas of Expertise: Health Behavior, Health Services Research, Implementation Science, Health Measurement, and Health Policy
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