Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate validated outcome measures that assess patients' and families' experiences at the end of life. As a result, efforts to evaluate palliative care have suffered. During the last five years, our research team has conducted VA-funded studies to identify what patients, family members and health care providers consider important at the end of life and subsequently developed and validated a measure specifically designed to assess the quality of life of patients at the end of life (the QUAL-E). However, to be comprehensive, for both research and clinical applications, measurement at the end of life must have the additional capacity to evaluate the quality of the end of life when patients become non-responsive. At-least one-third of terminally ill patients are too ill to respond; yet, may represent those in greatest need of individually structured care. Furthermore, in such instances, family members often function as decision-makers and by definition, in palliative care, are considered part of the unit of care. A validated measure of family experience in the health setting provides a valuable quality indicator and an alternative method of acquiring preferences for care for these most vulnerable patients.
Develop a measure of quality of experience for family members of dying patients (QUAL-E fam); and, 2.Validate the measure samples of family members of terminally ill veterans unable to communicate.
We propose a design and validation study of a new multi-dimensional scale to assess the quality of family experience at the end of life. The scale will be developed from foundational work for the QUAL-E as well as supplemental qualitative data collected from family members of terminally ill veterans. In the proposed study, we will assess structural validity, internal consistency, test-retest reliability and construct validity using data gathered from two consecutive samples of 250 family members or loved ones of terminally ill patients unable to communicate. We will enroll family members of patients admitted to two palliative care services. To create an instrument with greater generalizability and representation of families of female patients, we will enroll patients at both a VA and non-VA site. We will use data from the first sample of 250 to establish factor structure and a parsimonious instrument. Subsequently, data from the second sample will be used to establish predictive validity and test-retest reliability.
We transcribed and analyzed the qualitative data from focus groups and in-depth interviews. We heard 51 attributes of quality of family experience for patients with serious illness. These fell into eight broad domains: completion, symptoms impact, communication and decision-making, relationship with health care provider, preparation , logistical support post-death care, and social support. Some of the domains, completion, symptom impact, decision-making, relationship with health care provider, and social support, were identified by patients in the development of the patient QUAL-E instrument. However, within those domains, family members identified new attributes relevant to the caregiver experience. The domains of "post-death care" and "logistical" issues were new and provides crucial data for measurement and more immediate clinical care of patients and families at the end of life. The domains were triangulated with previous data, translated into questionnaire items, cognitively tested, and reduced to a four domain 35-item initial scale. Analyses produced a reduced 25-item version. Confirmatory factor analyses produced a final brief scale comprised of 17 items. It demonstrates appropriate convergent and divergent validity. Test-retest reliability demonstrated expected stability levels of stability in a highly changeable population. The scale provides an assessment of family experience and includes sub-scales assessing relationship with health care provider and completion. Additional scale items assess symptom experience and issues of preparation.
The creation and validation of an instrument to assess the quality of experience for families of dying patients would contribute to the provisions of quality care for terminally ill veterans and their families. The instrument would provide an evaluation tool for VA administrators seeking to improve end-of-life care. The QUAL-E fam will be 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 end of life tools derived and intended for veterans at the end of life.
- Steinhauser KE, Voils CI, Bosworth HB, Tulsky JA. Validation of a measure of family experience of patients with serious illness: the QUAL-E (Fam). Journal of pain and symptom management. 2014 Dec 1; 48(6):1168-81.
- Steinhauser KE, Clipp EC, Hays JC, Olsen M, Arnold R, Christakis NA, Lindquist JH, Tulsky JA. Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliative Medicine. 2006 Dec 1; 20(8):745-54.
- Steinhauser KE, Voils CI, Clipp EC, Bosworth HB, Christakis NA, Tulsky JA. "Are you at peace?": one item to probe spiritual concerns at the end of life. Archives of internal medicine. 2006 Jan 9; 166(1):101-5.
- Steinhauser KE, Olsen MK, Tulsky JA. Quality of life and functional status and emotional well being of patients with cancer, CHF, and COPD: Does diagnosis matter or is sick, sick? Paper presented at: European Association for Palliative Care Research Annual Forum; 2010 May 1; Risor, Norway.
- Steinhauser KE, Voils CI, Bosworth HB, Tulsky JA. Measuring the quality of family experience of patients with serious illness. Paper presented at: VA HSR&D National Meeting; 2009 Feb 14; Baltimore, MD.
- Steinhauser K. Measuring quality of life: the state of the art in end of life care and research. Paper presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2006 Feb 1; Nashville, TN.
Aging, Older Veterans' Health and Care, Health Systems
End-of-life, Quality assessment, Satisfaction (patient)