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MEASURING QUALITY OF FAMILY EXPERIENCE OF PATIENTS WITH SERIOUS ILLNESS
Project Number IIR 02-285 funded
by HSR&D.
January 2, 2005 -
December 31, 2009
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.
1. 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 six broad domains: completion, symptoms impact, communication and decision-making, relationship with health care provider, 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 domain of post-death care was new and provides crucial data for measurement and more immediate clinical care of patients and families at the end of life. These data have been used to draft an initial version of the QUAL-E fam.
Our local IRBs changed policy on approaching family members of patientsand finding a workable solution took several IRB iterations. We were then asked to identify physicians of patients who had died and have the physicians send letters to family members which took the first eight months of the study. Those contacts have been completed, as have the focus group and in-depth interview portion of the study. After analyzing those qualitative data, and combing with previously collected qualitative data, we drafted the instrument. The P.I. has worked with our consultant to learn the techniques of cognitive interviewing. We are finishing conducting those interviews, analyzing those data and revise the instrument accordingly. Concurrently, we have worked with the Philadelphia Va to submit IRB documentation for study approval. Upon final approval we will hire staff and begin validation with our site, Philadelphia.
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.
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