Patient and Caregiver Prioritization of Palliative and End-of-Life Cancer Care Quality Measures.

BACKGROUND: Development and prioritization of quality measures typically relies on experts in clinical medicine, but patients and their caregivers may have different perspectives on quality measurement priorities. OBJECTIVE: To inform priorities for health system implementation of palliative cancer and end-of-life care quality measures by eliciting perspectives of patients and caregivers. DESIGN: Using modified RAND-UCLA Appropriateness Panel methods and materials tailored for knowledgeable lay participants, we convened a panel to rate cancer palliative care process quality measure concepts before and after a 1-day, in-person meeting. PARTICIPANTS: Nine patients and caregivers with experience living with or caring for patients with cancer. MAIN MEASURES: Panelists rated each concept on importance for providing patient- and family-centered care on a nine-point scale and each panelist nominated five highest priority measure concepts ("top 5"). KEY RESULTS: Cancer patient and caregiver panelists rated all measure concepts presented as highly important to patient- and family- centered care (median rating ≥ 7) in pre-panel (mean rating range, 6.9-8.8) and post-panel ratings (mean rating range, 7.2-8.9). Forced choice nominations of the "top 5" helped distinguish similarly rated measure concepts. Measure concepts nominated into the "top 5" by three or more panelists included two measure concepts of communication (goals of care discussions and discussion of prognosis), one measure concept on providing comprehensive assessments of patients, and three on symptoms including pain management plans, improvement in pain, and depression management plans. Patients and caregivers nominated one additional measure concept (pain screening) back into consideration, bringing the total number of measure concepts under consideration to 21. CONCLUSIONS: Input from cancer patients and caregivers helped identify quality measurement priorities for health system implementation. Forced choice nominations were useful to discriminate concepts with the highest perceived importance. Our approach serves as a model for incorporating patient and caregiver priorities in quality measure development and implementation.

Expert Stakeholder Prioritization of Process Quality Measures to Achieve Patient- and Family-Centered Palliative and End-of-Life Cancer Care.

Importance: Quality measures of palliative and end-of-life care relevant to patients with advanced cancer have been developed, but few are in routine use. It is unclear which of these measures are most important for providing patient- and family-centered care and have high potential for improving quality of care. Objective: To prioritize process quality measures for assessing delivery of patient- and family-centered palliative and end-of-life cancer care in US Veterans Affairs (VA) health care facilities. Design, Setting, Participants: A panel of 10 palliative and cancer care expert stakeholders (7 physicians, 2 nurses, 1 social worker) rated process quality measure concepts before and after a 1-day meeting. Measures: Panelists rated 64 measure concepts on a nine-point scale on: (1) importance to providing patient- and family-centered care, and (2) potential for quality improvement (QI). Panelists also nominated five highest priority measure concepts ("top 5") on each attribute. Results: Panelists rated most measure concepts (54 premeeting, 56 post-meeting) as highly important to patient- and family-centered care (median rating ≥7). Considerably fewer (17 premeeting, 22 post-meeting) were rated as having high potential for QI. Measure concepts having postpanel median ratings ≥7 and nominated by one or more panelists as "top 5" on either attribute comprised a shortlist of 20 measure concepts. Conclusions: A panel of expert stakeholders helped prioritize 64 measure concepts into a shortlist of 20. Half of the shortlisted measures were related to communication about patient preferences and decision making, and half were related to symptom assessment and treatment.

Measure Scan and Synthesis of Palliative and End-of-Life Process Quality Measures for Advanced Cancer.

PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer. METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups. RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1). CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.

Assessment of the healthcare needs and barriers to VA use experienced by women veterans: findings from the national survey of women Veterans.

BACKGROUND: Prior regional studies of women Veterans identified barriers to Veterans Affairs (VA) healthcare use. However, these studies do not reflect the demographic profile of women Veterans nationally, recent advances in VA women's healthcare, and the national context of expanded healthcare alternatives. OBJECTIVE: To characterize health, VA perceptions, barriers, healthcare delivery preferences, and reasons for VA or non-VA healthcare use in a national women Veteran sample. METHODS: Cross-sectional, population-based 2008-2009 National Survey of Women Veterans (n=3611). RESULTS: VA users had worse physical and mental health than non-VA-only users and healthcare nonusers. Older women Veterans had worse physical health, whereas younger groups had worse mental health. Healthcare use was highest for dual users, followed by VA-only users, but did not differ by age group. Healthcare nonusers were most likely to lack a regular source for healthcare. Perceptions of VA care quality and sex-appropriateness were highest for VA-only, followed by dual, then non-VA-only users. VA perceptions were guided by personal experience for 90% of VA users, versus media or other secondhand sources for 70% of other groups. Non-VA-only users and healthcare nonusers had more knowledge gaps about VA and misperceptions about VA eligibility and services; non-VA-only users more likely encountered VA enrollment barriers. CONCLUSIONS: Many nonusers had healthcare needs that were not met. Positive VA perceptions by women with first-hand VA experience, contrasted with VA knowledge gaps by those without such exposure, suggests the need for more education about available VA healthcare services. VA planning should account for mental health needs and healthcare use by younger women Veterans.

Early lessons learned in implementing a women's health educational and virtual consultation program in VA.

BACKGROUND: Many Veterans Health Administration primary care providers (PCPs) have small female patient caseloads, making it challenging for them to build and maintain their women's health (WH) knowledge and skills. To address this issue, we implemented a longitudinal WH-focused educational and virtual consultation program using televideo conferencing. OBJECTIVE: To perform a formative evaluation of the program's development and implementation. RESEARCH DESIGN: We used mixed methods including participant surveys, semi-structured interviews, stakeholder meeting field notes, and participation logs. We conducted qualitative content analysis for interviews and field notes, and quantitative tabulation for surveys and logs. SUBJECTS: Veterans Health Administration WH PCPs. RESULTS: In 53 postsession surveys received, 47(89%) agreed with the statement, "The information provided in the session would influence my patient care." Among 18 interviewees, all reported finding the program useful for building and maintaining WH knowledge. All interviewees also reported that sessions being conducted during their lunch hour limited consistent participation. Logs showed that PCPs participated more consistently in the 1 health care system that provided time specifically allocated for this program. Key stakeholder discussions revealed that rotating specialists and topics across the breadth of WH limited submission of cases. CONCLUSIONS: Our WH education and virtual consultation program is a promising modality for building and maintaining PCP knowledge of WH, and influencing patient care. However, allocated time for PCPs to participate is essential for robust and consistent participation. Narrowing the modality's focus to gynecology, rather than covering the breadth WH topics, may facilitate PCPs having active cased-based questions for sessions.

Creating a sampling frame for population-based veteran research: representativeness and overlap of VA and Department of Defense databases.

Most veteran research is conducted in Department of Veterans Affairs (VA) healthcare settings, although most veterans obtain healthcare outside the VA. Our objective was to determine the adequacy and relative contributions of Veterans Health Administration (VHA), Veterans Benefits Administration (VBA), and Department of Defense (DOD) administrative databases for representing the U.S. veteran population, using as an example the creation of a sampling frame for the National Survey of Women Veterans. In 2008, we merged the VHA, VBA, and DOD databases. We identified the number of unique records both overall and from each database. The combined databases yielded 925,946 unique records, representing 51% of the 1,802,000 U.S. women veteran population. The DOD database included 30% of the population (with 8% overlap with other databases). The VHA enrollment database contributed an additional 20% unique women veterans (with 6% overlap with VBA databases). VBA databases contributed an additional 2% unique women veterans (beyond 10% overlap with other databases). Use of VBA and DOD databases substantially expands access to the population of veterans beyond those in VHA databases, regardless of VA use. Adoption of these additional databases would enhance the value and generalizability of a wide range of studies of both male and female veterans.

Women veterans' perceptions and decision-making about Veterans Affairs health care.

The increase in women in the military is reshaping the veteran population and Veterans Affairs (VA) health care delivery imperatives. To determine women veterans' perspectives and decision-making about VA health care use, we conducted six focus groups (four VA users and two nonusers) and identified key themes. Barriers to VA use for both VA users and nonusers included lack of information about eligibility and available services. Nonusers often assumed the VA did not provide women's health care. All groups emphasized they required a health care system focused on quality and sensitivity to women's health issues. However, users and nonusers differed in perceptions of VA quality. VA environment and quality concerns led many women to limit their VA use to women's clinics. These qualitative findings provide a context to highlight where interventions and policies suggested by quantitative findings should focus. Dissemination of accurate information about VA eligibility and services, and continued responsiveness to women's perceptions of care are indicated.