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PubMed2025

Outcomes and effectiveness of decision aids for families affected by hereditary cancer syndromes: A scoping review.

PURPOSE: In the past 15 years, numerous decision aids (DAs) have been developed to assist families affected by hereditary cancer syndromes in decision-making for managing inheritance and cancer risk. We identified the range and characteristics of DAs, focusing on their development stage according to guideline recommendations, their outcomes, and effectiveness. METHODS: A comprehensive search was conducted in MEDLINE, EMBASE, Cochrane, CINAHL, and PsycINFO, along with manual searches. Eligible articles reported DAs for supporting families affected by hereditary cancer syndromes, published in English from inception to July 2024. Quality was assessed using the Mixed-Methods Appraisal Tool. RESULTS: From 15,066 records, 32 studies with a moderate risk of bias, reporting 23 unique DAs, were identified. Most DAs targeted women (69.6%) with hereditary breast and ovarian cancer syndrome (73.9%) in North America and Europe (81.3%), primarily supporting decisions on cancer risk-reduction strategies (56.5%) and genetic testing/counseling (47.8%). Only 4 DAs were consistent with guideline-recommended development process, including prototype development, alpha- and beta-testing. Development and alpha-testing outcomes included user experience, understandability, and psychological impact. Beta-testing evaluated decision-making capacity, quality of the decision-making process, psychological impact, and impact on decisions. DAs consistently improved decision-making capacity and quality of the decision-making process but showed variable effects on psychological outcomes and actual decision in risk management. CONCLUSION: DAs are underdeveloped for genetic, racial, or gender minorities, according to guideline-recommended development process. Future research should develop DAs for broader populations and clarify their effectiveness, particularly regarding psychological outcomes.

Humans↗
PubMed2000

Videotape-based decision aid for colon cancer screening. A randomized, controlled trial.

BACKGROUND: Rates of colon cancer screening in the United States are low, in part because of poor communication between patients and providers about the availability of effective screening options. OBJECTIVE: To test whether a decision aid consisting of an educational video, targeted brochure, and chart marker increased performance of colon cancer screening in primary care practices. DESIGN: Randomized, controlled trial. SETTING: Three community primary care practices in central North Carolina. PATIENTS: 1657 consecutive adult patients 50 to 75 years of age were contacted. Of these, 651 (39%) agreed to participate; 249 of the 651 participants (38%) were eligible. Eligible patients had no personal or family history of colon cancer and had not had fecal occult blood testing in the past year or flexible sigmoidoscopy, colonoscopy, or barium enema in the past 5 years. INTERVENTION: The 249 participants were randomly assigned to view an 11-minute video about colon cancer screening (intervention group) or a video about automobile safety (control group). After viewing the video, intervention group participants chose a color-coded educational brochure (based on stages of change) to indicate their degree of interest in screening. A chart marker of the same color was attached to their charts. Controls received a generic brochure on automobile safety, and no chart marker was attached. MEASUREMENTS: Frequency of screening test ordering as reported by participants and frequency of completion of screening tests as verified by chart review. RESULTS: Fecal occult blood testing or flexible sigmoidoscopy was ordered for 47.2% of intervention participants and 26.4% of controls (difference, 20.8 percentage points [95% CI, 8.6 to 32.9 percentage points]). Screening tests were completed by 36.8% of the intervention group and 22.6% of the control group (difference, 14.2 percentage points [CI, 3.0 to 25.4 percentage points]). CONCLUSION: A decision aid consisting of an educational video, brochure, and chart marker increased ordering and performance of colon cancer screening tests.

Aged↗
PubMedDate not supplied

Evaluation of clinical decision aids--more to think about.

Validation and clinical testing of medical decision aids is a hot topic at present. We state a few main points which, in our opinion, have not received the attention they deserve. Our main concerns have to do with the statistical design and analysis of field evaluation studies; with long-term effects; and with the interplay between medicine and the software industry. The points represent our reaction to a recent symposium on the topic, published in this special issue. We take the opportunity to supplement the papers at hand in various ways and, where we see a risk of misconceptions or poor practice becoming cemented, try to point out the proper course.

Decision Making, Computer-Assisted↗
PubMed2003

Decision aid for allocation of transportation funds to guardrails.

We address the need for allocation of resources to run-off-road and fixed-object hazards on immense secondary road systems. In Virginia, there are 95,000km of roadway with uncharacterized hazards in need of guardrail upgrade, installation, or related warning signs or other protection. A decision aid is developed to assist the planner in guardrail resource allocation by accounting for the potential crash severities, traffic exposures, costs of treatment, and other factors. A premise is that no single benefit-cost ratio or selection criterion applies across all localities. The decision aid enables the planner to interpret the variety of benefits and costs in their own units, emphasizing the needs and preferences of individual localities. The paper describes: (1) archiving and comparison of protected and unprotected hazards; (2) regional screening of hazardous corridors and (3) multicriteria benefit-cost analyses of guardrail sites. A case study of guardrail selection is presented.

Accidents, Traffic↗
PubMed2004

Feasibility of a patient decision aid regarding disclosure of personal health information: qualitative evaluation of the Health Care Information Directive.

BACKGROUND: Concerns regarding the privacy of health information are escalating owing both to the growing use of information technology to store and exchange data and to the increasing demand on the part of patients to control the use of their medical records. The objective of this study was to evaluate the Health Care Information Directive (HCID), a recently-developed patient decision aid that aims to delineate the level of health information an individual is willing to share. METHODS: We convened a series of four focus group meetings with several communities in a large Canadian city. A total of 28 men and women participated, representing health care consumer advocates, urban professionals, senior citizens, and immigrants who speak English as a second language. Data were analysed using qualitative methods. RESULTS: Participants lacked substantial knowledge regarding the fate and uses of personal health information. They expressed mistrust concerning how their information will be used and protected. Several suggestions were made towards customizing the use of data according to specific needs rather than broad and full access to their charts. Furthermore, despite concern regarding the implementation of a tool like the HCID, participants were hopeful that a refined instrument could contribute to the improved regulation of health information. CONCLUSION: This study indicated poor knowledge concerning the uses of personal health information, distrust concerning security provisions, and cautious support for a patient decision aid such as the HCID to improve control over health data.

Access to Information↗
PubMed2002

Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial.

CONTEXT: Decision aids can increase patient involvement in treatment decision making. However, questions remain regarding their effects and cost implications. OBJECTIVE: To evaluate the effects of information, with and without a structured preference elicitation interview, on treatment choices, health outcomes, and costs. DESIGN, SETTING, AND PARTICIPANTS: A randomized controlled trial with 2 years of follow-up. Between October 1996 and February 1998, 894 women with uncomplicated menorrhagia were recruited from 6 hospitals in southwest England. Women were randomized to the control group, information alone group (information), or information plus interview group (interview). INTERVENTIONS: Women in both intervention groups were sent an information pack (a booklet and complementary videotape) 6 weeks before their specialist consultation. Immediately before their consultation, women in the interview group underwent structured interview, to clarify and elicit their preferences. MAIN OUTCOME MEASURES: Self-reported health status was the main outcome; secondary outcomes included treatments received and costs. Cost analyses adopted a UK health service (payer) perspective, and were based on patient-reported resource use data and are reported in 1999-2000 US dollars. RESULTS: The interventions had no consistent effect on health status. Hysterectomy rates were lower for women in the interview group (38%) (adjusted odds ratio [OR], 0.60; 95% confidence interval [CI], 0.38-0.96) than in the control group (48%) and women who received the information alone (48%) (adjusted OR, 0.52; 95% CI, 0.33-0.82). The interview group had lower mean costs ($1566) than the control group ($2751) (mean difference, $1184; 95% CI, $684-$2110) and the information group $2026 (mean difference, $461; 95% CI, $236-$696). CONCLUSIONS: Neither intervention had an effect on health status. Providing women with information alone did not affect treatment choices; however, the addition of an interview to clarify values and elicit preferences had a significant effect on women's management and resulted in reduced costs.

Adult↗
PubMed2006

Consumer impact of an interactive decision aid for rectal cancer patients offered adjuvant therapy.

OBJECTIVE: There is increasing interest in the use of decision aids (DAs) to facilitate patient involvement in clinical decisions. This study explored the views of patients with colorectal cancer and participants in a community bowel screening service regarding an interactive DA concerning adjuvant treatment for rectal cancer, and the impact of the aid on knowledge, anxiety, attitudes and preferences for treatment options. METHOD: Fourteen patients with colorectal cancer participated in four focus groups. Eighty-nine participants in a community bowel screening service completed a questionnaire before and 1 week after viewing the DA. Thirty were randomly selected to participate in a telephone interview to obtain qualitative feedback about the DA. RESULTS: Focus group participants reported using information to evaluate their doctor's care and expertise, or to prepare themselves for future symptoms and side-effects. Most supported the use of a DA and preferred pie charts to convey risk information. Within the community sample, anxiety remained stable and knowledge increased after exposure to the DA. Almost all participants found the DA useful and easy to understand, and felt it would make the process of decision making easier. CONCLUSION: A DA regarding adjuvant therapy for rectal cancer appears to be valued and to produce positive outcomes. A randomized controlled trial of this intervention is now required.

Aged↗
PubMed2002

Bone Browser a decision-aid for the radiological diagnosis of bone tumors.

Bone Browser, a decision-aid for radiological diagnosis of bone tumors, was developed in cooperation with the Radiology Department of the Rambam Medical Center, Haifa. The system offers case specific advice from an expert system (ES), general information on the lesion area and allows for recording and retrieving cases. The ES utilizes both rule-based and probabilistic inferencing methodologies to arrive at a differential diagnosis (DD). The knowledge base was validated on 105 cases with known outcome. Clinical evaluation consisted of 59 new cases whose final diagnosis was not known to the evaluators. The correct diagnosis was included in the system's DD in 85% of the cases, which is comparable to the diagnostic accuracy of senior radiologists (88%). The system proved to be helpful to the expert, diagnosing cases missed by the radiologists and suggesting additional diagnoses not listed by the radiologists, raising their diagnostic capability to 91%.

Adolescent↗
PubMed1999

Offering a choice between two adjuvant chemotherapy regimens: a pilot study to develop a decision aid for women with breast cancer.

BACKGROUND: The primary objective of this study was to develop a decision aid which would encourage and assist patients to become involved in treatment decision making, and help clinicians to objectively educate patients about the benefits and risks of adjuvant chemotherapy for breast cancer. A secondary objective was to investigate the factors influencing this treatment decision-making process for women when choosing between adriamycin and cyclophosphamide (AC) versus cyclophosphamide, methotrexate and 5-fluorouracil (CMF) chemotherapy. METHODS: An educational visual instrument called a Decision Board was developed consisting of written and graphical material. The Decision Board displays general information about chemotherapy and detailed information about each chemotherapy regimen, including the schedule and side effects, and was presented to patients with a scripted standardized oral explanation. The instrument was evaluated in 46 premenopausal women newly diagnosed with node-positive breast cancer. Following presentation of the board, the patients were given a take home version to review and asked to return 1-2 weeks later with a decision. During the second visit each patient was asked to complete a questionnaire regarding demographics, learning and comprehension, treatment preference, and factors influencing their decision. RESULTS: Recall of information was acceptable (> or = 80%). The Decision Board was found helpful by all, but the level of difficulty with decision making was variable. Out of 46 women, 23 women chose AC, 21 chose CMF, and two chose no treatment. The major factors affecting treatment preference were related to the impact on quality of life, the length of therapy, and the side effects, in particular, vomiting and alopecia. CONCLUSIONS: The Decision Board appears to be a valuable educational tool that enables patients to become well-informed and directly involved in their treatment decisions.

Adult↗
PubMed1999

Evaluation of a computerized contraceptive decision aid for adolescent patients.

Recent efforts to involve patients more actively in therapeutic decisions have suggested the relevance of computer-based interventions at clinic visits. This paper presents a longitudinal, experimental study evaluating a computer-based contraceptive decision aid in Chicago and Madison family planning clinic visits. Patient interviews at three time points evaluated patient acceptance by and program impact on 949 young women. Both Chicago and Madison patients reported high acceptance. The program resulted in improved short-term knowledge and confidence in oral contraceptive (OC) efficacy for Chicago and Madison patients. In addition, compared to their control group, Madison experimental group patients had higher OC knowledge 1 year after the initial visit and a trend for fewer pregnancies (P < 0.074). Compared to their control group, a higher percent of the Chicago experimental group patients adopted OC's after stating their intention to do so at the initial visit. Exposure to the computer program had no observable impact on the number of months on the oral contraceptive for Chicago or Madison patients. Overall findings suggest the usefulness of informatics tools as a supplement to patient-provider interactions.

Adolescent↗
PubMedDate not supplied

Evaluation of clinical decision-aids, with an application to a system for dyspepsia.

The evaluation of clinical decision-aids is discussed both in general and in the particular case of a microcomputer-based system designed to help general practitioners in deciding whether to refer patients with dyspepsia for specialist care. Parallels are drawn with the established framework for evaluating a new therapy, including a description of four phases of evaluation and the contrast between pragmatic and explanatory trials. Past studies are reviewed, emphasizing the difficulties of establishing a credible control group, and including some relevant examples from the areas of evaluating new diagnostic technology, medical information systems and audit procedures.

Clinical Trials as Topic↗
PubMed1993

A decision aid for diagnosis of liver lesions on MRI.

Abdominal magnetic resonance imaging (MRI) plays an important role in the evaluation of liver abnormalities. The interpretation of MR images requires expert training in a rapidly changing field. DAFODILL (Decision Aid for Diagnosing Liver Lesions) is a decision-support tool designed to aid radiologists in the diagnosis of hepatic lesions seen on MRI. DAFODILL uses a knowledge base of MRI findings and a belief-network inference engine to generate probabilistic differential diagnoses of the most commonly encountered hepatic lesions. DAFODILL performs limited image processing to identify clinically relevant features, which are presented to the user for confirmation before they are used by the network. Preliminary evaluation of an initial version of the system suggests that DAFODILL may be a useful tool for radiology residents and nonexpert radiologists in interpreting MR images of the liver.

Artificial Intelligence↗
PubMed1989

Computer-aided decision support in clinical medicine.

This paper reviews the problems and prospects involved in providing computer-aided decision support in clinical medicine. First, the evaluation of medical innovation is discussed. It is suggested that there are three criteria by which an innovation may be judged, namely (1) a need for the innovation, (2) the ability of the innovation to fulfil that need and (3) the ability to do so without transgressing practical, ethical or legal boundaries. These problems are addressed in turn. The paper suggests, taking one area of clinical medicine as an example (acute abdominal pain) there is a clear need for decision support--since the area is not handled well by doctors in current practice. Evidence is adduced to suggest that the computer can provide decision support and do so without transgressing professional, ethical or legal boundaries. The obstacles to progress, which stand in the way of widespread implementation are briefly discussed. These are lack of medical terminology, poor man-machine interface and above all a lack of co-ordination. Finally, it is suggested that the most valuable facet of current systems is the discipline and precision in data collection they impose upon practicing doctors.

Attitude to Computers↗
PubMed1999

Cross-Cultural Differences in Choice Behavior and Use of Decision Aids: A Comparison of Japan and the United States.

A controlled laboratory study was conducted to investigate the effect of cultural differences on decision strategy. Participants from two cultures (Japan and the United States) completed multi-attribute preferential choice tasks with and without use of computerized decision aids. The results indicate that Japanese participants were less likely to invoke compensatory decision processes, which involve conflict-confronting assessment of trade-offs among attributes. This behavior is consistent with some cultural differences described in extant literature. The results call into question the generalizability across cultures of descriptive decision theories, which come largely from the West, and suggest the need for descriptive theories that incorporate cultural factors. Copyright 1999 Academic Press.

Journal Article↗
PubMedDate not supplied

Decision aid development for use in ambulatory health care settings.

An approach is presented using interactive microcomputers for the development of diagnostic decision aids applicable to some complaints encountered in ambulatory care. The central feature of the descriptive phase of the approach is the use of the underlying (and perhaps dynamic) state of patient health. The central feature of the prescriptive phase of the approach is quick, simple assessment which produces a set of nondominated diagnostic tests, the selection of which is biased by the subjectively determined disease(s) that the diagnostician wishes to rule out or confirm. We present an application of the approach to the complaint, "diarrhea of recent onset in adults," discuss the hardware/software implementation, and summarize preliminary evaluation results.

Adult↗
PubMed2004

Patient-focussed decision-making in early-stage prostate cancer: insights from a cognitively based decision aid.

PURPOSE: To study the cognitive processes of early-stage prostate cancer patients as they determined which treatment they preferred, using our cognitively based decision aid. METHOD: The aid was a one-to-one interview that included the structured presentation of information, listing exercises in which the patient identified attributes important to his decision, and trade-off exercises to help him weigh and integrate those attributes together. At various points of the interview, patients identified the attributes they felt were important to their decision, rated their treatment options and completed standardized assessments relating to their decision. In addition, patients participated in a follow-up interview at the time they made their actual treatment decision and again 3 months later. RESULTS: Sixty of 70 (86%) of the invited patients participated in the study. Participating patients identified a median of four important attributes (range 1-10); 36 different attributes were identified at some point in the interview by the group. During the interview, 78% of patients changed which attributes they considered important, and 72% changed their treatment ratings. Stability of treatment choice after the interview and lack of regret after the decision were each positively associated with increasing differentiation between treatment options over time. CONCLUSIONS: The decision process appears to be dynamic for the patients with great variability across patients in what is important to the decision. Increasing stability of choice and lack of regret appear to be related positively to increasing difference over time in how attractive the preferred option is over its closest competitor, rather than to the size of the difference at any one point in time.

Canada↗
PubMed2003

What factors are associated with a woman's decision to take hormone replacement therapy? Evaluated in the context of a decision aid.

OBJECTIVES: To understand the factors associated with a post-menopausal woman deciding to take hormone replacement therapy (HRT) after reviewing a decision aid (DA) and having a counselling visit with her physician as well as the factors associated with the act of taking HRT 2 months after the counselling interview. DESIGN: A secondary analysis of data collected for a randomized controlled trial evaluating two DAs. MAIN OUTCOME RESULTS: Although 28% of women were uncertain regarding their decision after the counselling interview, only 2.4% of women, at the assessment at 2 months, had not made a decision. The most significant factor associated with the decision to take HRT, after the physician visit, was the physician preference (OR: 62, 95% CI: 13.3, 289.7). Physician preference (OR: 78, 95% CI: 6.2, 975) remained the most significant factor for taking HRT 2 months after the counselling interview followed by low uncertainty about the decision (OR: 0.4, 95% CI: 0.2, 0.7). CONCLUSION: Physician preference was the factor that was most associated with the woman's decision following counselling and 2 months later. Qualitative evaluation of the interview process involving the patient and physician would determine whether the patient and physician are reaching a shared decision or is the physician preference influencing the patient.

Canada↗
PubMed2004

Randomised trial comparing an interactive multimedia decision aid with a leaflet and a video to give information about prenatal screening for Down syndrome.

OBJECTIVES: (1)To compare an interactive multimedia decision aid (IMDA) with a leaflet and a video to give information about prenatal screening for Down syndrome and (2) to determine the women's acceptance of IMDA. METHODS: Two hundred and one women were recruited from the prenatal clinic of a university teaching hospital and randomised into the intervention group (IMDA, video, and information leaflet) or the control group (video and information leaflet). RESULTS: There were no significant differences in the initial decision for and the final uptake of the prenatal screening test between the control and intervention groups. The proportion of women who were undecided was less than 10% in both groups. Of the women in the intervention group, 86.6% and 78.9% agreed that IMDA was user-friendly and acceptable, respectively. Significantly more women aged < 35 (88.1%) accepted IMDA than women aged > or = 35 (68.3%) (P = 0.030), but the logistic regression analysis did not confirm this finding after adjusting for other factors (computer knowledge and usage of computer). CONCLUSION: The use of IMDA did not affect the women's overall uptake rate of the prenatal screening test for Down syndrome. More women less than 35 years accepted IMDA probably because they used computer more frequently and had more computer knowledge.

Adult↗