Evidence for improving palliative care at the end of life: a systematic review.

BACKGROUND: Many persons and their families are burdened by serious chronic illness in late life. How to best support quality of life is an important consideration for care. PURPOSE: To assess evidence about interventions to improve palliative and end-of-life care. DATA SOURCES: English-language citations (January 1990 to November 2005) from MEDLINE, the Database of Abstracts of Reviews of Effects, the National Consensus Project for Quality Palliative Care bibliography, and November 2005 to January 2007 updates from expert reviews and literature surveillance. STUDY SELECTION: Systematic reviews that addressed "end of life," including terminal illness (for example, advanced cancer) and chronic, eventually fatal illness with ambiguous prognosis (for example, advanced dementia), and intervention studies (randomized and nonrandomized designs) that addressed pain, dyspnea, depression, advance care planning, continuity, and caregiving. DATA EXTRACTION: Single reviewers screened 24,423 titles to find 6381 relevant abstracts and reviewed 1274 articles in detail to identify 33 high-quality systematic reviews and 89 relevant intervention studies. They synthesized the evidence by using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) classification. DATA SYNTHESIS: Strong evidence supports treating cancer pain with opioids, nonsteroidals, radionuclides, and radiotherapy; dyspnea from chronic lung disease with short-term opioids; and cancer-associated depression with psychotherapy, tricyclics, and selective serotonin reuptake inhibitors. Strong evidence supports multi component interventions to improve continuity in heart failure. Moderate evidence supports advance care planning led by skilled facilitators who engage key decision makers and interventions to alleviate caregiver burden. Weak evidence addresses cancer-related dyspnea management, and no evidence addresses noncancer pain, symptomatic dyspnea management in advanced heart failure, or short-acting antidepressants in terminal illness. No direct evidence addresses improving continuity for patients with dementia. Evidence was weak for improving caregiver burdens in cancer and was absent for heart failure. LIMITATIONS: Variable literature indexing for advanced chronic illness and end of life limited the comprehensiveness of searches, and heterogeneity was too great to do meta-analysis. CONCLUSION: Strong to moderate evidence supports interventions to improve important aspects of end-of-life care. Future research should quantify these effects and address the generalizability of insights across the conditions and settings of the last part of life. Many critical issues lack high-quality evidence.

A systematic review of measures of end-of-life care and its outcomes.

OBJECTIVE: To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies. DATA SOURCES: English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care. STUDY DESIGN: Systematic review of end-of-life care literature. EXTRACTION METHODS: Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies. PRINCIPAL FINDINGS: Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies. CONCLUSIONS: In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards.

Effect of content and format of prescription drug labels on readability, understanding, and medication use: a systematic review.

OBJECTIVE: To evaluate the evidence regarding the optimal content and format of prescription labels that might improve readability, understanding, and medication use. DATA SOURCES: We performed a systematic review of randomized controlled trials, observational studies, and systematic reviews from MEDLINE and the Cochrane Database (1990-June 2005), supplemented by reference mining and reference lists from a technical expert panel. STUDY SELECTION: We selected studies that focused on the content of physician-patient communication about medications and the content and format of prescription drug labels. DATA EXTRACTION: Two reviewers extracted and synthesized information about study design, populations, and outcomes. DATA SYNTHESIS: Of 2009 articles screened, 36 that addressed the content of physician-patient communication about medications and 69 that were related to the content or format of medication labels met review criteria. Findings showed that patients request information about a drug's indication, expected benefits, duration of therapy, and a thorough list of potential adverse effects. The evidence about label format supports the use of larger fonts, lists, headers, and white space, using simple language and logical organization to improve readability and comprehension. Evidence was not sufficient to support the use of pictographic icons. Little evidence linked label design or content to measurable health outcomes, adherence, or safety. CONCLUSIONS: Evidence suggests that specific content and format of prescription drug labels facilitate communication with and comprehension by patients. Efforts to improve the labels should be guided by such evidence, although additional study assessing the influence of label design on medication-taking behavior and health outcomes is needed. Several policy options exist to require minimal standards to optimize medical therapy, particularly in light of the new Medicare prescription drug benefit.

The state of women veterans' health research. Results of a systematic literature review.

OBJECTIVE: Assess the state of women veterans' health research. DESIGN: Systematic review of studies that pertained specifically to or included explicit information about women veterans. A narrative synthesis of studies in 4 domains/topics was conducted: Stress of military life; Health and performance of military/VA women; Health services research/quality of care; and Psychiatric conditions. MEASUREMENTS AND MAIN RESULTS: We identified 182 studies. Of these, 2 were randomized-controlled trials (RCTs) and the remainder used observational designs. Forty-five percent of studies were VA funded. We identified 77 studies pertaining to the stress of military life, of which 21 reported on sexual harassment or assault. Rates of harassment ranged from 55% to 79% and rates of sexual assault from 4.2% to 7.3% in active duty military women and 11% to 48% among women veterans. Forty-two studies concerned the health and performance of military/VA women, with 21 studies evaluating sexual assault and posttraumatic stress disorder (PTSD) and their effect on health. Fifty-nine studies assessed various aspects of health services research. Eight studies assessed quality of care and 5, patient satisfaction. Twenty-five studies assessed utilization and health care organization, and findings include that women veterans use the VA less than men, that gender-specific reasons for seeking care were common among female military and veteran personnel, that provision of gender-specific care increased women veterans' use of VA, and that virtually all VAs have available on-site basic women's health services. Fifty studies were classified as psychiatric; 31 of these were about the risk, prevalence, and treatment of PTSD. CONCLUSIONS: Most research on VA women's health is descriptive in nature and has concerned PTSD, sexual harassment and assault, the utilization and organization of care, and various psychiatric conditions. Experimental studies and studies of the quality of care are rare.

Methodological approaches for a systematic review of end-of-life care.

As background for a National Institutes of Health State of the Science Conference on End-of-Life-Care, we performed a systematic review of end-of-life care and outcomes. The systematic review was intended to evaluate the evidence in the field from the perspective of concerns important to patients, caregivers, and the health care system. This article relates the challenges in performing a systematic review of end-of-life care and outcomes, and describes the methods that we used to define the scope, search the literature, develop exclusion and inclusion criteria, incorporate various types of articles, and synthesize the results. Major challenges to conducting a review included the need to define "end of life," clarify a conceptual framework of outcomes including definitions of terms and the relationships among terms, and determine specific goals for the review. The review identified 24,423 total citations, of which 911 comprised the final set used for the evidence report. This very large, diverse body of literature reflects the tremendous growth of the field of end-of-life care over the last decade.

Quality measures for symptoms and advance care planning in cancer: a systematic review.

PURPOSE: Measuring quality of care for symptom management and ascertaining patient goals offers an important step toward improving palliative cancer management. This study was designed to identify systematically the quality measures and the evidence to support their use in pain, dyspnea, depression, and advance care planning (ACP), and to identify research gaps. METHODS: English-language documents were selected from MEDLINE, Cumulative Index to Nursing and Allied Health, PsycINFO (1995 to 2005); Internet-based searches; and contact with measure developers. We used terms for each domain to select studies throughout the cancer care continuum. We included measures that expressed a normative relationship to quality, specified the target population, and specified the indicated care. Dual data review and abstraction was performed by palliative care researchers describing populations, testing, and attributes for each measure. RESULTS: A total of 4,599 of 5,182 titles were excluded at abstract review. Of 537 remaining articles, 19 contained measures for ACP, six contained measures for depression, five contained measures for dyspnea, and 20 contained measures for pain. We identified 10 relevant measure sets that included 36 fully specified or fielded measures and 14 additional measures (16 for pain, five for dyspnea, four for depression, and 25 for ACP). Most measures were unpublished, and few had been tested in a cancer population. We were unable to describe the specifications of all measures fully and did not search for measures for pain and depression that were not cancer specific. CONCLUSION: Measures are available for assessing quality and guiding improvement in palliative cancer care. Existing measures are weighted toward ACP, and more nonpain symptom measures are needed. Additional testing is needed before the measures are used for accountability, and basic research is required to address measurement when self-report is impaired.