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AHRQ Evidence reports and summaries AHRQ Evidence Reports, Numbers 1-60 46. Impact of Cancer-Related Decision Aids Evidence Report/Technology Assessment Number 46 Prepared for: Contract No. 290-97-0017 Prepared by: AHRQ Publication No. 02-E004 July 2002 On December 6, 1999, under Public Law 106-129, the Agency for Health Care Policy and Research (AHCPR) was reauthorized and renamed the Agency for Healthcare Research and Quality (AHRQ). The law authorizes AHRQ to continue its research on the cost, quality, and outcomes of health care and expands its role to improve patient safety and address medical errors. This report may be used, in whole or in part, as the basis for development of clinical practice guidelines and other quality enhancement tools, or a basis for reimbursement and coverage policies. AHRQ or U.S. Department of Health and Human Services endorsement of such derivative products may not be stated or implied. This document is in the public domain and may be used and reprinted without permission except those copyrighted materials noted for which further reproduction is prohibited without the specific permission of copyright holders. Suggested Citation:Whelan TM, O'Brien MA, Villasis-Keever M, et al. Impact of Cancer-Related Decision Aids. Evidence Report/Technology Assessment Number 46. (Prepared by McMaster University under Contract No. 290-97-0017.) AHRQ Publication No. 02-E004, Rockville, MD: Agency for Healthcare Research and Quality. July 2002. PrefaceThe Agency for Healthcare Research and Quality (AHRQ), through its Evidence-based Practice Centers (EPCs), sponsors the development of evidence reports and technology assessments to assist public- and private-sector organizations in their efforts to improve the quality of health care in the United States. The reports and assessments provide organizations with comprehensive, science-based information on common, costly medical conditions and new health care technologies. The EPCs systematically review the relevant scientific literature on topics assigned to them by AHRQ and conduct additional analyses when appropriate prior to developing their reports and assessments. To bring the broadest range of experts into the development of evidence reports and health technology assessments, AHRQ encourages the EPCs to form partnerships and enter into collaborations with other medical and research organizations. The EPCs work with these partner organizations to ensure that the evidence reports and technology assessments they produce will become building blocks for health care quality improvement projects throughout the Nation. The reports undergo peer review prior to their release. AHRQ expects that the EPC evidence reports and technology assessments will inform individual health plans, providers, and purchasers as well as the health care system as a whole by providing important information to help improve health care quality. We welcome written comments on this evidence report. They may be sent to: Director, Center for Practice and Technology Assessment, Agency for Healthcare Research and Quality, 6010 Executive Blvd., Suite 300, Rockville, MD 20852.
Objectives: Decision aids have been developed to improve communication between health professionals and patients, and to help involve patients in health care decisions. The area of cancer-related decisions has been found to be particularly problematic with respect to health professional-patient communication and decisionmaking for a number of reasons, including difficulties in communicating information about poor prognoses and modest benefits of treatments used. The objectives of this review were to describe the different cancer-related decision aids (DAs) that have been developed and to evaluate the effectiveness of these interventions. Search Strategy:Studies were identified by searching MEDLINE (1977 to April 2001), HEALTHstar, Cancerlit, Cinahl, Sociological Abstracts, PsycINFO (1977 to August 2000), and EMBASE (1995 to August 2000); the Cochrane Library (issue 3, 2000), reference lists of included studies, and personal files of experts. The main search terms were decisionmaking; decision analysis; patient education; patient participation; and neoplasms. Selection Criteria:Primary studies about prevention, screening, and treatment decisionmaking focused on cancer that met the definition of a decision aid were included. Exclusion criteria were studies of benign prostatic hyperplasia, hormone replacement therapy, and smoking cessation as well as unpublished studies or those published as abstracts only. Data Collection and Analysis:Two reviewers independently extracted data, including methodological quality items for all studies. Disagreements were resolved by consensus. Descriptive statistics were calculated for all fields of the database. Evidence tables were constructed to describe the most salient features of the studies according to the review questions. Data were not pooled, because clinical heterogeneity existed across the studies (different types of cancer, diverse range of decisions: prevention, screening, treatment, and different study designs), outcomes measurements were inconsistent, and, overall, the studies had low methodological quality scores. Main Results
Our results support that decision aids are helpful for some cancer screening decisions. In these situations, DAs can increase knowledge, do not increase anxiety, and, in some circumstances, can influence the decision made. In contrast, there is very little data available evaluating decision aids for cancer-treatment-related decisions, and further evidence is still needed. The early stage of development of this field and the gaps in our knowledge determined by this systematic review underline the need for further research. A number of different areas were identified, such as developing a better understanding of how and when decisionmaking occurs; who is involved (clinician, patient, or others); and the extent of their involvement. The key features of quality decisionmaking need to be determined from patients and clinicians to help investigators develop appropriate interventions and to identify and prioritize outcome measures of effectiveness. Multicenter collaboration to formally set a research agenda is needed because integration of different research efforts in the field appears to be suboptimal. National or international collaboration would permit development of consensus about important basic concepts regarding decisionmaking, decision aids, and important outcomes. SummaryOverview Decision aids are mechanisms or interventions that have been developed to improve communications between health professionals and patients and to help involve patients in making decisions regarding their health care. Decision aids can include brochures, videotapes, or interactive computer programs. Recent reviews have suggested that decision aids may be effective in supporting general health care decisions. Cancer screening or treatment have been found to be particularly prone to difficulties in communication and decisionmaking between health professionals and their patients. There are a number of reasons for these problems, including difficulties in communicating information about poor prognoses and the modest benefits of the treatments used. The objective of this study was to conduct a comprehensive, systematic review of the literature to determine the impact of decision aids on cancer prevention, screening, and treatment decisions. Reporting the EvidenceA set of questions was initially proposed by the National Cancer Institute's Division of Cancer Control and Population Sciences, and was further refined with input from members of the McMaster University Evidence-based Practice Center (MU-EPC) and the project officer at the Agency for Healthcare Research and Quality (AHRQ), which funds the EPC program. The Technical Expert Panel (TEP) for this project included individuals who represented providers of health care, experts in study methodology, and researchers. After consultation with the TEP, the following key questions were selected as the focus of the Evidence Report. Types of Decision Aids
Selection Criteria and Screening Process The authors regarded as potentially eligible any article that (1) described a study in humans and (2) was about the development or evaluation of a cancer-related decision aid. There was no exclusion based on study design or language of publication. Primary studies about prevention, screening, and treatment decisionmaking; that focused on cancer; and that met the definition of a decision aid were included. A decision aid was defined as "an intervention designed primarily to help patients (or patients and clinicians together) with making cancer-related health care decisions, when options are available for prevention, screening, and treatment. At a minimum, it should target some component of decisionmaking (e.g., information exchange, involvement in the decision process)." Studies of benign prostatic hyperplasia, hormone replacement therapy, and smoking cessation were excluded, as were studies published in abstract form only. The research team used a two-stage screening process. In the first step, six raters worked in pairs to screen the titles and abstracts identified by the searches. In the second step, randomly assigned pairs of raters screened full text articles, then three reviewers checked all included studies and categorized them according to the context of the decision and type of study. Discrepancies were resolved by discussion. Literature SearchCitations of potentially relevant studies were identified through a systematic research of: MEDLINE from 1977 to the end of April 2001; HealthSTAR, CANCERLIT, CINAHL, Sociological Abstracts, and PsycINFO from 1977 to August 2000; EMBASE from 1995 to August 2000; The Cochrane Library (Issue 3, 2000); reference lists of included studies; and the personal files of research team members. The development and refinement of the search strategy followed an iterative process using the MEDLINE database. The refined MEDLINE strategy was modified to meet the specific features of the other electronic databases. Data ExtractionIn consultation with the TEP and project officer, all data extraction forms were developed, pilot-tested, and revised by members of the local research team. Two reviewers completed data extraction independently for all studies. Any disagreements were resolved by consensus. Following consensus on each item, the data forms were scanned into a Microsoft Access database using Teleform software. Data SynthesisDescriptive statistics were calculated for all fields of the database. Evidence tables were constructed to describe the most salient features of the included studies according to the review questions. The local research team at the MU-EPC, in consultation with members of the partner organizations and the project officer, evaluated the overall quantity and quality of the data available. A draft of the report was sent to an international Peer Review panel, comprised of researchers in the field of decisionmaking, methodologists, and consumers. This report incorporates many of the suggestions of the Peer Review panel and represents a detailed qualitative synthesis of the existing evidence, emphasizing the directions that future researchers could take to fill knowledge gaps. FindingsThe analysis of the yield of the literature and the general characteristics of the studies showed that:
These results support the proposal that decision aids are helpful for a number of cancer-screening decisions. In these situations, such instruments can increase knowledge, do not increase anxiety, and can influence the decision made. In contrast, there are few data available evaluating aids for decisions related to cancer treatment. Unfortunately, further evidence is still needed before making specific conclusions regarding decision aids in this situation. The early stage of development of this field and the gaps in knowledge outlined in this systematic review underline the need for further research. A number of different areas were identified. Future research efforts should:
In addition to focusing on these areas, future research efforts should consider:
The report concludes that funding should be sought from government and industry sources to support this research. |