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Patient decision aids have been used in many clinical situations to improve the patient centeredness of care. A patient decision aid for patients with posttraumatic stress disorder (PTSD) has not been developed or tested. The authors evaluated the effects of a patient decision aid on the patient centeredness of PTSD treatment.The study was a randomized trial of a patient decision aid for PTSD versus treatment as usual (control group). The participants were 132 male and female veterans who presented to a single U.S. Department of Veterans Affairs hospital with a new diagnosis of PTSD. Patient centeredness was assessed by knowledge of PTSD and its treatment, level of decisional uncertainty, and ability to state a preferred treatment option. Secondary outcomes included treatments received and PTSD symptoms in the six months after study entry.Compared with the control group (N=65), participants who reviewed the patient decision aid (N=63) had higher scores for PTSD knowledge (p=.002) and less conflict about their choice of treatment (p=.003). In addition, participants who reviewed the patient decision aid were more likely to select and receive an evidence-based treatment for PTSD (p=.04) and had superior PTSD outcomes (p=.004) compared with the control group.Use of a patient decision aid was associated with improvements in patient-centered PTSD treatment. The patient decision aid was also associated with greater use of evidence-based treatments and improvement of PTSD symptoms. This study suggests that clinics should consider using a patient decision aid for patients with PTSD.

Background Posttraumatic Stress Disorder (PTSD) is a commonly occurring mental illness. There are multiple treatments for PTSD that have similar effectiveness, but these treatments differ substantially in other ways. It is desirable to have well-informed patients involved in treatment choices. A patient decision aid (PtDA) is one method to achieve this goal. This manuscript describes the rationale and development of a patient decision aid (PtDA) designed for patients with PTSD. Methods We conducted an informational needs assessment of veterans (n = 19) to obtain their baseline information needs prior to the development of the PtDA. We also conducted a literature review of effective PTSD treatments, and we calculated respective effective sizes. A PtDA prototype was developed according to the guidelines from the International Patient Decision Aid Standards. These standards guided our development of both content and format for the PtDA. In accordance with the standards, we gathered feedback from patients (n = 20) and providers (n = 7) to further refine the PtDA. The information obtained from patients and the literature review was used to develop a decision aid for patients with PTSD. Results Patients with PTSD reported a strong preference to receive information about treatment options. They expressed interest in also learning about PTSD symptoms. The patients preferred information presented in a booklet format. From our literature review several treatments emerged as effective for PTSD: Cognitive Therapy, Exposure Therapy, Eye Movement Desensitization Therapy, Selective Serotonin Reuptake Inhibitors, venlafaxine, and risperidone. Conclusion It appears that the criteria set forth to develop decision aids can effectively be applied to PTSD. The resultant PTSD patient decision aid is a booklet that describes the causes, symptoms, and treatments for PTSD. Future work will examine the effects of use of the PTSD decision aid in clinical practice. Trial registration Clinicaltrials.gov identifier NCT00908440. Registered May 20, 2009. Electronic supplementary material The online version of this article (doi:10.1186/s12888-016-0724-x) contains supplementary material, which is available to authorized users.

To develop a patient decision aid (PtDA) for older women with Stage I, pathologically node negative, estrogen receptor-positive progesterone receptor-positive breast cancer who are considering adjuvant radiotherapy after lumpectomy and to examine its impact on patients' decision making.A PtDA was developed and evaluated in three steps according to the Ottawa Decision Support Framework: (1) needs assessment (n = 16); (2) Pilot I to examine PtDA acceptability (n = 12); and (3) Pilot II, a pretest posttest (n = 38) with older women with estrogen receptor-positive progesterone receptor-positive breast cancer after lumpectomy who were receiving adjuvant radiation therapy. Measures included patients' satisfaction with the PtDA, self-reported decisional conflict, level of distress, treatment-related knowledge, and choice predisposition.The PtDA is a booklet that details each adjuvant treatment option's benefits, risks, and side effects tailored to the patient's clinical profile; includes a values clarification exercise; and includes steps to guide patients towards their decision. On the basis of qualitative comments and satisfaction ratings, all women thought that the PtDA was helpful and informative. In comparison with their baseline scores, patients had a statistically significant (p0.05) reduction in decisional conflict (adjusted mean difference [AMD], -7.18; 95% confidence interval [CI], -13.50 to 12.59); increased clarity of the benefits and risks (AMD, -10.86; CI, -20.33 to 21.49); and improved general treatment knowledge (AMD, 8.99; CI, 2.88-10.28) after using the PtDA. General trends were also reported in the patients' choice predisposition scores that suggested potential differences in treatment decision after PtDA use.This study provides evidence that this PtDA may be a helpful educational tool for this group of women. The quality of care for older breast cancer patients may be enhanced by the use of a tailored PtDA to help patients be better informed about their treatment options.

Background: Decision Aids (DA) are developed with the intent to support people in making specific and deliberate choices by improving information transfer about different outcomes. Previous research has shown that DAs can increase patient knowledge regarding treatment options, reduce decisional conflict, and increase patient satisfaction with the decision-making process. However, no DAs have been developed to help older breast cancer patients decide whether or not to undergo adjuvant RT. We developed and tested a DA for older women with stage I,ER/PR positive breast cancer considering adjuvant treatment post-lumpectomy and we examined its impact on treatment decision-making process. Methods and Materials: A DA was developed and evaluated in three steps following the Ottawa Decision Aid Framework: 1) Needs assessment (N=16); 2) Pilot I, to examine the DA's acceptability (N=12); and 3) Pilot II, a pre-test post-test (N=38) with older women with ER/PR responsive breast cancer post-lumpectomy who were receiving adjuvant RT. Measures included questionnaires to assess patient's satisfaction with the DA, patients’ self-reported decisional conflict (DC), level of distress, treatment-related knowledge, and choice predisposition Results: The DA is a booklet that details each adjuvant treatment option's benefits, risks and side-effects tailored to their clinical profile; includes a value clarification exercise; and steps to guide them towards their own treatment decision. All women felt the DA was helpful and informative. Compared with baseline scores, patients had a statistically significant (p < .05) reduction in DC (adjusted mean difference [AMD], −7.18; 95% confidence interval [CI], −13.50 to 12.59); increased clarity of the treatment benefits and risks (AMD, −10.86, CI, −20.33 to 21.49; and improved general treatment knowledge (AMD, 8.99, CI, 2.88 to 10.28) after using the DA. General trends were also reported in patient's choice predisposition scores suggesting potential differences in treatment decision after DA use. Discussion: This study provides evidence that this DA may be a helpful educational tool for this group of women. The quality of care for older breast cancer patients may be enhanced by using a tailored DA to help the patient be informed of their treatment options and to prepare for decision-making. Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P5-15-03.

Background: The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children’s quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences. Methods: We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child’s quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique. Results: A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p Interpretation: Compared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer.

Objective The objective was to determine if participants’ strength-of-preference scores for elective health care interventions at the end-of-life (EOL) elicited using a non-engaging technique are affected by their prior use of an engaging elicitation technique. Design Medicare beneficiaries were randomly selected from a larger survey sample. During a standardized interview, participants considered four scenarios involving a choice between a relatively less- or more-intense EOL intervention. For each scenario, participants indicated their favoured intervention, then used a 7-point Leaning Scale (LS1) to indicate how strongly they preferred their favoured intervention relative to the alternative. Next, participants engaged in a Threshold Technique (TT), which, depending on the participant’s initially favoured intervention, systematically altered a particular attribute of the scenario until the participant switched preferences. Finally, they repeated the LS (LS2) to indicate how strongly they preferred their initially-favoured intervention. Results Two hundred and two participants were interviewed (189–198 were included in this study). The concordance of individual participants’ LS1 and LS2 scores was assessed using Kendall tau-b correlation coefficients; scores of 0.74, 0.84, 0.85 and 0.89 for scenarios 1–4, respectively, were observed. Conclusion Kendall tau-b statistics indicate a high concordance between LS scores, implying that the interposing engaging TT exercise had no significant effects on the LS2 strength-of-preference scores. Future investigators attempting to characterize the distributions of strength-of-preference scores for EOL care from a large, diverse community could use non-engaging elicitation methods. The potential limitations of this study require that further investigation be conducted into this methodological issue.

Purpose To elicit neck pain (NP) patients’ preference scores for their current health, and investigate the association between their scores and NP disability. Methods Rating scale scores (RSs) and standard gamble scores (SGs) for current health were elicited from chronic NP patients (n = 104) and patients with NP following a motor vehicle accident (n = 116). Patients were stratified into Von Korff Pain Grades: Grade I (low-intensity pain, few activity limitations); Grade II (high-intensity pain, few activity limitations); Grade III (pain with high disability levels, moderate activity limitations); and Grade IV (pain with high disability levels, several activity limitations). Multivariable regression quantified the association between preference scores and NP disability. Results Mean SGs and RSs were as follows: Grade I patients: 0.81, 0.76; Grade II: 0.70, 0.60; Grade III: 0.64, 0.44; Grade IV: 0.57, 0.39. The association between preference scores and NP disability depended on type of NP and preference-elicitation method. Chronic NP patients’ scores were more strongly associated with depressive symptoms than with NP disability. In both samples, NP disability explained little more than random variance in SGs, and up to 51% of variance in RSs. Conclusion Health-related quality-of-life is considerably diminished in NP patients. Depressive symptoms and preference-elicitation methods influence preference scores that NP patients assign to their health.

Purpose The purpose of this study was to measure the degree to which informed women chose mastectomy, and to reveal their reasons for this choice. Patients and Methods This was a prospective cohort study of patients radiographically and pathologically eligible for either mastectomy or breast-conserving surgery (BCS; n = 125). Participants completed questionnaires at three time points: baseline, after viewing a decision aid, and after a surgical consultation. Questionnaires assessed clinical history, preference for participation in decision making, information comprehension, values, decisional conflict, and preferred treatment. Results Of 125 participants, 44 (35%) chose mastectomy. Most understood that BCS and mastectomy offer an equivalent survival benefit (98%) and that BCS has a slightly higher local recurrence risk (63%); most accurately identified the magnitude of ipsilateral local recurrence risk (91%). Values assigned to three treatment attributes/outcomes (“remove breast for peace of mind,” “avoid radiation,” and “keep breast”) clearly discriminated between patients choosing mastectomy or BCS. High decisional conflict scores improved after both the decision aid and surgical consultation. Conclusion Although conventional wisdom may view BCS as the preferred treatment, a notable proportion of well informed women choose mastectomy. Whereas prior studies have linked objective factors to treatment choice, this study reveals subjective preferences that underlie decision making. The systematic use of a decision aid before the surgical consultation may help women make informed, values-based decisions, while clearly reducing decisional conflict.

Study Design Decision analysis. Objective To identify the best treatment for nonspecific neck pain. Summary of Background Data In Canada and the United States, the most commonly prescribed neck pain treatments are nonsteroidal anti-inflammatory drugs (NSAIDs), exercise, and manual therapy. Deciding which treatment is best is difficult because of the trade-offs between beneficial and harmful effects, and because of the uncertainty of these effects. Methods (Quality-adjusted) life expectancy associated with standard NSAIDs, Cox-2 NSAIDs, exercise, mobilization, and manipulation were compared in a decisionanalytic model. Estimates of the course of neck pain, background risk of adverse events in the general population, treatment effectiveness and risk, and patient-preferences were input into the model. Assuming equal effectiveness, we conducted a baseline analysis using risk of harm only. We assessed the stability of the baseline results by conducting a second analysis that incorporated effectiveness data from a high-quality randomized trial. Results There were no important differences across treatments. The difference between the highest and lowest ranked treatments predicted by the baseline model was 4.5 days of life expectancy and 3.4 quality-adjusted life-days. The difference between the highest and lowest ranked treatments predicted by the second model was 7.3 quality-adjusted life-days. Conclusion When the objective is to maximize life expectancy and quality-adjusted life expectancy, none of the treatments in our analysis were clearly superior.

Objectives Therapeutic decisions in osteoarthritis (OA) often involve trade-offs between accepting risks of side effects and gaining pain relief. Our objectives were (1) to determine patients' maximum acceptable risk increments (MARI) for different adverse effects from OA medication and (2) to identify the predictors of these preferences. Study Design and Setting MARI were measured with a probabilistic threshold technique (TT). Risk and pain levels in the TT scenarios were controlled for in a 2 × 2 randomized factorial design. Clinical, sociodemographic, and psychological characteristics (decisional conflict and locus of control) of the participants were assessed using a self-administered questionnaire. Results For 196 subjects, MARI varied by type of adverse effect, level of pain relief, and baseline risk. Mean MARI ranged from 3% to 5% for heart attack/stroke, 5% to 8% for stomach bleed, 13% to 21% for hypertension, 22% to 33% for fluid retention, and 23% to 35% for dyspepsia. Age, gender, education, physical and mental health, pain, disability, and locus of control were not associated with MARI. Conclusion Participants varied widely in the level of risk they would accept, but their clinical, sociodemographic, and psychological characteristics did not explain this variation. These observations are important for the development of practice guidelines for physicians and patients' decision aids that can foster individualized, evidence-based yet preference-sensitive care for patients with OA.

The following is a summary report from a special symposium titled, `Translating Research into Practice: Setting a Research Agenda for Clinical Decision Tools in Cancer Prevention, Early Detection, and Treatment,` that was held on 23 October 2005 in San Francisco at the Annual Meeting of the Society for Medical Decision Making (SMDM). The symposium was designed to answer the question: `What are the top 2 research priorities in the field of patients' cancer-related decision aids?` After introductory remarks by Dr. Barry, each of four panelists-Drs. Hilary Llewellyn-Thomas, Ellen Peters, Laura Siminoff, and Dale Collins-addressed the question and provided their rationale during prepared remarks. The moderator, Dr. Michael Barry, then facilitated a discussion between the panelists, with input from the audience, to further explore and add to the various proposed research questions. Finally, Dr. Amber Barnato conducted a simple vote count (see Table 1) to prioritize the panelists' and the audience's recommendations.

Background: The diagnosis of cancer sets off a cascade of complex decisions at a time when patients feel vulnerable and distressed. Although clinical decisions used to follow one standard, many guidelines now outline several options and include explicit recognition of the need to incorporate patients’ preferences to determine the most appropriate treatment.Purpose: The purpose of this article is to provide a brief overview of empirical studies about cancer patients’treatment-related decision making, to highlight the areas of congruence and divergence in that empirical literature, and then to generate a framework that points to future interventions and research.Methods: Through a group discussion with a range of experts in the field, we generated a framework for the critical treatment decisions and key issues within those decisions. Then, we reviewed the literature describing the experiences of cancer patients and evaluating interventions designed to improve the quality of treatment decisions.Results: We identified four major differences that influence decision making across cancers and across individuals with the same diagnosis.We also identified four common themes across situations and people. There is considerable evidence that decision aids can improve the quality of decisions across a range of diseases, although the data for cancer treatment decision making are limited. Other interventions such as navigation-skill training are promising but have little evidence of benefit for cancer decisions.Conclusions: There are many opportunities for behavioral research to extend and contribute to the understanding and improvement of cancer treatment decision making. Some key areas in need of research include developing taxonomies of disease and patient characteristics and increasing understanding of the lived experiences of cancer survivors, of the influence of time and timing, of the relationship of information and preferences, and of participation in randomized clinical trials.

The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.

Purpose: To evaluate the effect of a standardized group psychosocial intervention on health-related quality of life (HrQOL) in women with metastatic breast cancer and to explore the effect of missing data in HrQOL analyses. Patients and Methods: Between 1993 and 1998, seven Canadian centers randomly assigned 235 eligible women to participate in a weekly, 90-minute, therapist-led support group that adhered to principles of supportive-expressive (SE) therapy or to a control arm (no SE). All women received educational material and any type of medical or psychosocial care deemed necessary. HrQOL data were prospectively collected using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) at baseline, 4, 8, and 12 months. The primary HrQOL analyses compared scores in the two study arms. Analyses were limited to women with appropriate baseline HrQOL information (n = 215). Results: Baseline EORTC QLQ-C30 scores were not different between the two study arms (all P > .05). Primary analysis of all subscales failed to show a significant influence of the intervention on HrQOL (all P > .05). There was a significant deterioration over time in several functional scales of the EORTC QLQ-C30: global (P = .03), physical (P = .0002), role (P = .01), and cognitive functioning (P = .04); and in symptom scales: dyspnea (P = .007), appetite loss (P = .04), and fatigue (P = .003); these changes were independent of randomization allocation. Results were similar in additional analyses of overall HrQOL using a variety of approaches to handling missing data. Conclusion: Supportive-expressive group therapy in patients with metastatic breast cancer does not appear to influence HrQOL, as measured by the EORTC QLQ-C30.

The objective was to identify, in primary prevention, patients whose “required risk reduction” (ReqRR) is greater than the “achievable risk reduction” (ARR) that cholesterol-lowering or antihypertensive medication could provide. Individualized estimates of 10-year coronary heart disease or stroke risk were derived for 66 hypercholesterolemic (HC) and 64 hypertensive (HT) patients without symptomatic cardiovascular disease. These estimates were used in trade-off tasks identifying each individual’s ReqRR. Then individual ARRs were estimated (in HC patients by assuming total cholesterol/high density lipoprotein ratio reductions to 5.0; in HT patients by assuming systolic blood pressure reductions to 120 mmHg). 12 (18%) HC and 12 (19%) HT subjects would refuse medication regardless of the risk reduction offered. Of the remaining patients, 15/54 (28%; 95% C.I.: 16-40%) HC and 19/52 (37%; 95% C.I.: 24-51%) HT subjects were “over-requirers,” in that their ReqRR/ARR ratio was 1.5. There may be a notable proportion of patients whose ReqRR is considerably greater than what is achievable, implying that decision aids may help individuals clarify preferences about accepting/refusing medication for the primary prevention of cardiovascular disease.

Objective To assess the feasibility and acceptability of a patient workbook for self-assessing coronary risk. Design Pilot study, with post-study physician and patient interviews. Setting and subjects Twenty southern Ontario family doctors and 40 patients for whom they would have used the workbook under normal practice conditions. Interventions The study involved convening two sequential groups of family physicians: the first (n=10) attended focus group meetings to help develop the workbook (using algorithms from the Framingham Heart Study); the second (n=20) used the workbook in practice with 40 patients. Follow-up interviews were by interviewer-administered questionnaire. Main outcome measures Physicians' and patients' opinions of the workbook's format, content, helpfulness, feasibility, and potential for broad application, as well as patients' perceived 10-year risk of a coronary event measured before and after using the workbook. Results It took an average of 18 minutes of physician time to use the workbook: roughly 7 minutes to introduce it to patients, and about 11 minutes to discuss the results. Assessments of the workbook were generally favourable. Most patients were able to complete it on their own (78%), felt they had learned something (80%) and were willing to recommend it to someone else (98%). Similarly, 19 of 20 physicians found it helpful and would use it in practice with an average of 18% of their patients (range: 1–80%). The workbook helped to correct misperceptions patients had about their personal risk of a coronary event over the next 10 years (pre-workbook (mean (SD) %): 35.2 (16.9) vs. post-workbook: 17.3 (13.5), P

Background Over 100 trials show that patient decision aids effectively improve patients’ information comprehension and values-based decision making. However, gaps remain in our understanding of several fundamental and applied questions, particularly related to the design of interactive, personalized decision aids. This paper describes an interdisciplinary development process for, and early field testing of, a web-based patient decision support research platform, or virtual decision lab, to address these questions. Methods An interdisciplinary stakeholder panel designed the web-based research platform with three components: a) an introduction to shared decision making, b) a web-based patient decision aid, and c) interactive data collection items. Iterative focus groups provided feedback on paper drafts and online prototypes. A field test assessed a) feasibility for using the research platform, in terms of recruitment, usage, and acceptability; and b) feasibility of using the web-based decision aid component, compared to performance of a videobooklet decision aid in clinical care. Results This interdisciplinary, theory-based, patient-centered design approach produced a prototype for field-testing in six months. Participants (n = 126) reported that: the decision aid component was easy to use (98%), information was clear (90%), the length was appropriate (100%), it was appropriately detailed (90%), and it held their interest (97%). They spent a mean of 36 minutes using the decision aid and 100% preferred using their home/library computer. Participants scored a mean of 75% correct on the Decision Quality, Knowledge Subscale, and 74 out of 100 on the Preparation for Decision Making Scale. Completing the web-based decision aid reduced mean Decisional Conflict scores from 31.1 to 19.5 (p

Evidence based health care has become the accepted basis of good clinical practice, and many efforts are being made to implement it. Evidence based patient choice, defined as offering patients research based information and the opportunity to influence decisions about their treatment and care, has yet to achieve the same status. We believe, however, that it is fundamental to high quality patient care. In our ideal world difficult or controversial healthcare decisions would routinely involve health professionals deliberating with patients about the harms and benefits of all available options, as well as patients' treatment goals and risk tolerance. For key medical decisions, patients and doctors would expect to work through the evidence and decide on a course of action together. Patients who wished to delegate decision making to a doctor or surrogate decision maker would still be given the information that they wanted. Various strategies may be needed to achieve this widespread implementation of evidence based patient choice. 1 2 In this article we focus on a strategy to improve the accessibility of information resources to support evidence based patient choice. The books, journals, and websites that currently provide evidence based information about the effectiveness of healthcare interventions could provide the infrastructure to support patients' participation in evidence based decision making. These information sources should incorporate consumer focused summaries of relevant research evidence and links or pointers to well designed and tested decision aids for patients. These summaries should be made available to patients before, during, and after consultations. Doctors and health systems could use and distribute them as an adjunct to clinical care. They would also be available to the public generally. The news and information media, patient groups, and others would draw on patient choice summaries to present the benefits and limitations of medical screening and treatment. ### Summary points Evidence …

This study assessed family physicians' and pulmonary specialists' approaches to the treatment of adult outpatient asthma using a self-administered questionnaire consisting of six asthma scenarios of varying severity levels. One hundred sixty-three randomly selected family physicians and pulmonary specialists completed the questionnaire (response rate of 80%). We observed that, regardless of asthma severity, more than 75% of physicians (regardless of specialty) would not include oral theophylline or nonsteroidal anti-inflammatory preparations in their treatment approach. Pulmonary specialists' and family physicians' approaches to mild asthma were similar (more than 90% recommended an inhaled beta2-agonist). However, considerable differences existed among and between physician groups for the remaining scenarios. For example, with an exacerbation associated with an upper respiratory tract infection, family physicians were more likely to recommend oral antibiotics (p

The objective of this study was to determine whether patients with Crohn's disease (CD) value the absolute reduction in postoperative recurrence risk attributable to therapy with mesalamine (5-ASA). One hundred subjects evaluated state A (taking 5-ASA; 25% risk of recurrence), state B (not taking 5-ASA; 40% risk of recurrence), and state C (100% risk of recurrence) by rank order, visual analog scale (VAS), and standard gamble (SG). Sixty-five of 91 patients (71 %) with completed and usable questionnaires had the same preference order for state A (25% risk), state B (40% risk), and state C (100% risk) on both the VAS and the SG. The mean scores for state A (25% risk), state B (40% risk), and state C (100% risk), respectively, were 67.5, 49.8, and 19.8 on the VAS and 0.977, 0.972, and 0.910 on the SG. Subgroup analyses using stepwise logistic regression showed that risk attitude seemed to be predictive of subjects' preferences for 5-ASA. These results suggest that most subjects seem to value the 15% absolute risk reduction offered by 5-ASA. Furthermore, the SG seems to be a feasible method for measuring utilities for uncertain health states in patients with CD. Key words: standard gamble; risk attitude; treatment interventions; uncertain health states. (Med Decis Making 2000;20:72-78)

Background Whether to simply provide palliative care or to intubate and use mechanical ventilation (MV) in a patient with severe COPD in acute respiratory failure is a difficult decision. The outcome of MV cannot be accurately predicted. Some patients cannot be weaned from the ventilator; those who are weaned often return to chronic severe respiratory disability. It is important that patients participate in this decision, but assistance is required. To address these issues, we developed and pilot-tested an aid to assist patients with MV decisions. Methods A scenario-based decision aid was developed consisting of an audiocassette and a booklet describing intubation and MV and its possible outcomes. We used a probability tradeoff technique to elicit the patients' preferences and a decisional conflict scale to evaluate satisfaction. Results With the assistance of the decision aid, all patients (10 men and 10 women) reached a decision. Two men and all 10 women declined MV. Mean decisional conflict was low (2.2 of a possible 5; SD, 0.9). At 1 year, only two patients (11%) had changed their decision. The agreement between physicians and patients was 65%; between next-of-kin and patients, there was uniform disagreement. Conclusion With the decision aid, stable decisions were made with satisfaction and confidence. Proxy decisions were incongruent, especially when made by family members. The strong gender effect should be further investigated. We suggest that the COPD decision aid be further tested in a community clinical setting.

The objectives of this study were to describe physicians' self-reported approaches to providing disease-specific education to adults with asthma in an outpatient setting and their opinions about the level of patient involvement in management decisions. A mailed questionnaire was completed by 163 randomly selected physicians, representing an 80% response rate. The educational actions provided most frequently included information about prescribed medications (90%-100% of physicians), general asthma information (87%-98%), and inhaler demonstration (85%-95%). Educational activities provided least frequently were action plans (7%-74%) and referral to a nonprofit community asthma organization for further information (18%-36%). The reported provision of asthma education was related to patients' asthma severity (p0.0001) and physician specialty (p0.005). Physicians indicated that their patients were less involved in asthma management decisions than they would prefer (p0.001). The results suggest that physicians vary markedly in their approaches to providing asthma education to patients. Future descriptive and intervention studies are needed to identify the most effective models for providing education and patient involvement.

There are several million breast cancer survivors worldwide. In the United States, 180,000 women were diagnosed with breast cancer in 1997, and approximately 97,000 of these women have an extremely low chance of suffering a recurrence of their cancer. With an average age at diagnosis of 60 years and a 25-year expected duration of survival, the current number of breast cancer survivors in the United States may approach 2.5 million women. Since breast cancer is now being detected at an earlier stage than previously and since adjuvant chemotherapy may cause ovarian failure, an increasing number of women are becoming postmenopausal at a younger age after breast cancer treatment. This conference was convened in September 1997 to consider how menopausal breast cancer survivors should be treated at the present time and what future studies are needed to develop improved therapeutic strategies. A total of 59 breast cancer experts and patient advocates participated. The proceedings of the conference will be published in six installments in successive issues of oncology. The first part, published last month, defined the problem and explored its magnitude and ramifications for patient management. This second part focuses on the benefits and risks of hormone replacement therapy (HRT) in patients with breast cancer. [ONCOLOGY 13(2):245-267, 1999]

We assessed patients on the waiting lists of a purposive sample of orthopaedic surgeons in Ontario, Canada, to determine patients' attitudes towards time waiting for hip or knee replacement. We focused on 148 patients who did not have a definite operative date, obtaining complete information on 124 (84%). Symptom severity was assessed with the Western Ontario/McMaster Osteoarthritis Index and a disease-specific standard gamble was used to elicit patients' overall utility for their arthritic state. Next, in a trade-off task, patients considered a hypothetical choice between a 1-month wait for a surgeon who could provide a 2% risk of post-operative mortality, or a 6-month wait for joint replacement with a 1% risk of post-operative mortality. Waiting times were then shifted systematically until the patient abandoned his/her initial choice, generating a conditional maximal acceptable wait time. Patients were divided in their attitudes, with 57% initially choosing a 6-month wait with a 1% mortality risk. The overall distribution of conditional maximum acceptable wait time scores ranged from 1 to 26 months, with a median of 7 months. Utility values were independently but weakly associated with patients' tolerance of waiting times (adjusted R-square = 0.059, P = 0.004). After splitting the sample along the median into subgroups with a relatively 'low' and 'high' tolerance for waiting, the subgroup with the apparently lower tolerance for waiting reported lower utility scores (z = 2.951; P = 0.004) and shorter times since their surgeon first advised them of the need for surgery (z = 3.014; P = 0.003). These results suggest that, in the establishment and monitoring of a queue management system for quality-of-life-enhancing surgery, patients' own perceptions of their overall symptomatic burden and ability to tolerate delayed relief should be considered along with information derived from clinical judgements and pre-weighted health status instruments.

The objectives of this study were to assess the impact of major joint replacements in reducing pain and disability and to describe the burden of pain and disability that could be avoided by ordering the queues with respect to severity of disease. A secondary goal was to compare the uses of a general health status measure, the Short Form Health Survey (SF-36), and a disease-specific measure, the Western Ontario McMaster Osteoarthritis Index (WOMAC), for accomplishing the objectives. The results are based on interviews with 209 patients before and after they had surgery. Only 15.9% of the patients had surgery within 3 months' waiting time, 19.2% waited 4-6 months, 30.7% waited 7-9 months, and the remaining 34.1% waited a year or more. The waiting times were unrelated to the severity of pain or disability reported in the initial interview. Following surgery, there were large reductions in the WOMAC scores for pain, stiffness and difficulty in functioning. The SF-36 showed substantial improvements in relief from pain and in physical functioning, and reductions in role limitation due to physical problems, but not for scores related to mental health. The WOMAC scores were more responsive to the benefits of surgery than the SF-36 scores. Queuing systems keyed on burden of symptoms could reduce the burden of pain and disability suffered by patients awaiting surgery. The improvements from hip and knee replacements suggest that equitable access for these procedures should be a priority in Ontario.

Objectives. To assess the Threshold Technique's (TT) feasibility in community-wide surveys of U.S. Medicare beneficiaries' preferences for end-of-life (EOL) care options. Study Setting. Study participants were community-dwelling Medicare beneficiaries in four different regions in the United States. Study Design. During personal interviews, participants considered four EOL scenarios, each presenting a choice between a less intense and more intense care option. Data Collection. Participants selected their initially favored option. Depending on that choice, in the subsequent TT the length of life offered by the more intense option was systematically increased or decreased until the participant “switched” to his or her initially rejected option. Principal Findings. Participants were able to select an initially favored option (in 3 of the 4 scenarios; this was the less intense option). The majority of participants were able to engage with the subsequent TT. In all scenarios, regardless of the increase/decrease in the length of life offered by the more intense option, the majority of participants were unwilling to “switch” to their initially rejected option. Conclusions. In surveys of populations' preferential attitudes toward EOL care options, the TT was a feasible elicitation method, engaging most participants and measuring the strength of their attitudes. Further methodological work is merited, involving (1) populations with various participant characteristics, and (2) different attributes in the TT task itself.

Forty-one angina patients with coronary disease were interviewed to examine the correlation between prespecified and individualized weights for disease-specific measures of the effects of angina on the patients' well-being. Modifications of the Canadian Cardiovascular Society (CCS) scale for angina and the Duke Activity Specific Index (DASI) were used to rate functional capacity with prespecified items. Disease-specific utilities based on descriptions of functional status were obtained directly, and again indirectly with different anchoring conditions to control for noncardiac comorbidity. Correlations between the functional-capacity measures and the derived utilities were not strong, ranging from -0 25 (p > 0.1) to -0.35 (p = 0.02). Correlation between the two prespecified measures was higher (r = -0.51 or -0.69, both p < 0.01, for DASI versus CCS graded from walking and stair-climbing, re spectively). The direct and indirect disease-specific utility scores were similar (r = 0.92, p < 0.01). The method described provides an approach to measuring disease-specific utilities by adapting existing scales for use in a standard gamble. It confirms that prespecified functional status scores inconsistently reflect patients' valuations of functional states. Further investigation should address whether the observed null effect of comorbidity on disease- specific utilities arose from inadequate coverage of the comorbidity issues in patient inter views or from lack of power given the small size of the feasibility study. Key words: cardiac patients' utilities; cardiac functional capacity; utilities for angina; comorbidity. (Med Decis Making 1996;16:78-85)

Despite increasing emphasis on advance directives, there has been little methodologic work to assess preferences about the "do not resuscitate" (DNR) order. This developmental work assessed, in a non-patient group, the performance of a probability-trade-off task designed to assess DNR attitudes, in terms of framing effects and stability of preferences. 105 female nursing students each completed one of two versions of the task. In version I ( n = 58), the trade-off moved to increasingly negative descriptions of the outcomes of resuscitation (de creasing chance of survival and increasing risk of brain death), whereas in version II ( n = 47), the trade-off moved to increasingly positive descriptions. One week later, repeat as sessments were obtained for versions I ( n = 35) and II (n = 28). The DNR preference scores were lower and more stable when the task moved to increasingly positive descriptions; perhaps this version of the task tends to weaken risk aversion. These results imply that care should be used in applying a probability trade-off task to the assessment of DNR preferences, since artefactual effects could be induced. Key words : patients' decision making; prefer ences; trade-offs; resuscitation; anchoring effect. (Med Decis Making 1995;15:209-216)

The study objective was to assess the relative effects of 2 approaches to teaching about a clinical trial, in terms of patients' satisfaction, information understanding, and whether or not they would enter such a trial. One hundred patients receiving radiation therapy for a variety of cancer diagnoses were randomized to receive information about a hypothetical trial, either by audio tape or interactive computer program. A day later, information understanding was assessed. One week later, method satisfaction and whether respondents would enter such a trial were assessed. There were no differences in understanding or satisfaction. Members of the computer program group tended to report a more positive attitude towards trial entry (chi 2 = 4.0; 1 df; P = 0.05). Overall, refusers tended to be women with higher understanding scores. The results suggest that teaching with interactive components might not adversely affect trial accrual. Further work involving an actual trial entry decision is merited; the sex of the respondent should be controlled in designing this future work.

The study purpose was to determine whether the framing of treatment information influenced patients' reported preferences for participating in treatment decision making and for trial entry. Ninety cancer patients read either neutrally-, positively-, or negatively-framed infor mation about a chemotherapeutic treatment, then indicated their preferences for participating in the treatment decision, and whether they would participate in a clinical trial incorporating this protocol. There was no difference across information groups in preferences for partici pating in treatment decision making or willingness to enter such a clinical trial. Preference for participation in treatment decision making was significantly related to age (t = 2.54; p = 0.022), sex (x2 = 3.89; p = 0.05), and education (t = 2.54; p = 0.018); trial entry preferences were unrelated to these demographic variables. These results imply that, in this clinical context, attitudes towards participation in treatment decision making may be asso ciated with characteristics of the patient, and attitudes towards trial entry may be dependent upon the clinical characteristics of a particular trial, but neither set of attitudes is influenced by the framing of protocol information. Key words: framing effect; patients' preferences; quality of life; decision making; clinical trials. (Med Decis Making 1995;15:4-12)

Providing a patient with decision support involves helping that person to choose among two or more elective health care options. “Values Clarification” and “Preference Elicitation” are integral to the full decision-support process. During values clarification, the patient and clinician gain insight into the importance that the patient ascribes to the options’ positive and negative characteristics. During preference elicitation, the patient identifies which options are, overall, personally most favored (and, by corollary, which are least favored). This article identifies the roles that values clarification/preference elicitation (VC/PE) play in the full process of patients’ decision support, outlines various approaches to fostering VC/PE, and poses some fundamental and applied research questions about VC/PE. It also argues that, in order to proceed to answer the posed research questions, investigators in the field of patients’ decision support require a systematic set of criteria for comparing the performance of different VC/PE techniques.

Objective The objective was to determine whether a paired-comparison/Leaning Scale (LS) method: 1) could feasibly be used to elicit strength-of-preference scores for elective health care options in large community-based survey settings and 2) could reveal preferential subgroups that would have been overlooked if only a categorical-response format had been used. Study Design Medicare beneficiaries in four different regions of the United States were interviewed in person. Participants considered eight clinical scenarios, each with two to three different health care options. For each scenario, participants categorically selected their favored option, then indicated how strongly they favored that option relative to the alternative on a paired-comparison bidirectional LS. Results Two hundred two participants were interviewed. For seven of the eight scenarios, a clear majority (>50%) indicated that, overall, they categorically favored one option over the alternative(s). However, the bidirectional strength-of-preference LS scores revealed that, in four scenarios, for half of those participants, their preference for the favored option was actually “weak” or “neutral.” Conclusion Investigators aiming to assess population-wide preferential attitudes toward different elective health care scenarios should consider gathering ordinal-level strength-of-preference scores and could feasibly use the paired-comparison/bidirectional LS to do so.

Sample sizes for treatment trials with categorical outcomes are conventionally derived by balancing three elements: a difference between alternative treatments in the event rates for the outcomes of interest (commonly termed the clinically important difference), the alpha error tolerance (false positive risk) and the beta error tolerance (false negative risk). Clinically important differences used to plan trials are chosen in part based on earlier experience with similar interventions (i.e. biological or clinical plausibility). Methodological conventions and clinicians' perceptions will also affect choices. Lastly, practical concerns about the feasibility of accruing large numbers of subjects may drive trialists to specify bigger differences as clinically important, with a view to containing sample size requirements. We suggest that patients or other members of the public be given an active role in determining the magnitude of the clinically important treatment effect for trial planning. Probability trade-offs could be constructed to enable patients and/or healthy volunteers to indicate the degree of benefit they would want from a “new” treatment, given the potential side-effects of the same treatment. This method has the advantage of respecting patient autonomy and principles of informed consent. It provides an additional consideration when plausible effect sizes and error tolerances on hypothesis tests are balanced against feasibility of accruing various sample sizes. Its primary disadvantage is inconvenience, as it adds another step to trial design. On the other hand, if patient-based clinically important differences are generated for a variety of disease states and types of treatments, specific trade-off exercises may be needed only for unusual trials. Another disadvantage is that patients' perspectives may differ markedly from clinicians' or from society at large, leading to conflicts of perspective that could prove difficult to resolve. However, we believe that raising and addressing such conflicts of perspective is itself a useful part of the evaluative process.

Fundamental to using utilities for future health states for clinical decision analysis is the assumption that the utilities are stable. The purpose of this study was to determine if cancer patients' prior evaluations of a treatment-induced health state remain stable when they later experience that state. Before a four-week course of radiation therapy, 66 laryngeal cancer patients evaluated three common treatment-induced outcome scenarios (mild/moderate/severe) using rating scales and the time trade-off, and provided self-assessments of voice symptoms, voice function, and general health. Evaluations and self-assessments were repeated at the end of therapy, and respondents indicated which outcome scenario described their actual end-of-therapy state. Twenty-four patients identified the mild scenario as their outcome state, 36 the moderate, and 6 the severe. No across-time differences in evaluations were detected, although significant (P.0001) downward shifts in scores for voice symptoms (t = 5.67), voice function (t = 5.10), and general health (t = 6.69) indicated that actual change in health status had occurred. These results imply that patients' evaluations of imagined short-term health states encountered during radiation therapy for laryngeal cancer remain consistent when those states are experienced at a later time. The design of this project provides a model for determining if this consistency appears in other clinical situations.

A study was done to determine the extent to which patients' subjective evaluations of their current health are determined by their expectations, their actual health, and how they compare themselves with others. At the initiation of radiation therapy, 61 laryngeal cancer patients described the health status they expected at the end of therapy, using standardized and individualized dimensions. Objective summative scores were derived for these descriptions. At the end of therapy, these respondents described their current health status and the status they believed others their age were experiencing, on the same dimensions, and objective summative scores were derived for these actual and social comparison states Rating scales and standard gambles were used to obtain values and utilities ("subjective evaluations") for current health at the end of therapy. Multiple linear regression was used to determine the extent to which variation in the subjective evaluations was explained by the objective scores for actual, expected, and social comparison states, under these different methodologic con ditions Actual health state was a consistently significant predictor. Most variance was ex plained in the model using individualized dimensions and value scores (r2 = 46 0%). Further investigation is needed to determine whether differences in the amounts of variance explained are due to aversion to gambling, dimension salience, order effects, or respondent fatigue Key Words. health status, health utilities, health values, prospect theory (Med Decis Making 1992;12:115-122)

The study purpose was to determine whether differences in the weights assigned to various dimensions of health by 90 women in three subgroups (benign breast disease, breast cancer receiving chemotherapy, and breast cancer receiving other therapies) were associated with differences in self-reported health status in these dimensions. Two methods, one direct and the other indirect, were used to elicit values for mobility, depression, and social support. Two different scales also provided self-reports of health status in each of these dimensions. These measures, in conjunction with sociodemographic variables, were used to test for status- value relationships. No statistically significant association between health values and health status was observed. The absence of any detectable association may have been a result of methodologic difficulties in assessing broadly defined dimensions of health. A possible solution would be to use "individualized" dimensions that are uniquely important to the individual, and to take into account such factors as possible influences of past health status and values, and possible gaps between expected health status and health status actually experienced. Key words: health status measurement; patients' values; utility assessment. (Med Decis Making 1991 ;11 :180-188)

The major purpose was to explore the use of written case scenarios to investigate factors associated with regional variations in referral for consultation. Data were collected in Nova Scotia, where extensive computer-based records of utilization of health services are kept, and the nine health care regions are in sufficient proximity to make visits and interviews feasible. Interviews with 9 x 25 = 225 randomly-selected family physicians, using scenarios analogous to ICD-9 codes, permitted testing of hypotheses about the effects of selected variables on referral rates for hypothetical cases. The family physicians' self-reported referral behavior for the written case scenarios was compared, region by region, with the actual referral of analogous cases by physicians in the same region, as determined from Nova Scotia Health Services and Insurance Commission records. The results indicated that written scenarios provide a useful tool for studies of such variables. Generally, the family physicians responded appropriately to the information that described the hypothetical patients ("case cues"). However, comparisons of hypothetical and actual referral rates indicated that appropriate information about the environment within which referral decisions take place ("environmental cues") may be needed to explain actual regional variations in referral rates.

STUDY DESIGN: Decision analysis. OBJECTIVE: To identify the best treatment for nonspecific neck pain. SUMMARY OF BACKGROUND DATA: In Canada and the United States, the most commonly prescribed neck pain treatments are nonsteroidal anti-inflammatory drugs (NSAIDs), exercise, and manual therapy. Deciding which treatment is best is difficult because of the trade-offs between beneficial and harmful effects, and because of the uncertainty of these effects. METHODS: (Quality-adjusted) life expectancy associated with standard NSAIDs, Cox-2 NSAIDs, exercise, mobilization, and manipulation were compared in a decision-analytic model. Estimates of the course of neck pain, background risk of adverse events in the general population, treatment effectiveness and risk, and patient-preferences were input into the model. Assuming equal effectiveness, we conducted a baseline analysis using risk of harm only. We assessed the stability of the baseline results by conducting a second analysis that incorporated effectiveness data from a high-quality randomized trial. RESULTS: There were no important differences across treatments. The difference between the highest and lowest ranked treatments predicted by the baseline model was 4.5 days of life expectancy and 3.4 quality-adjusted life-days. The difference between the highest and lowest ranked treatments predicted by the second model was 7.3 quality-adjusted life-days. CONCLUSION: When the objective is to maximize life expectancy and quality-adjusted life expectancy, none of the treatments in our analysis were clearly superior

Background: Treatment decision making for postoperative Crohn's disease is complex because of the increasing number of maintenance therapies available with competing risk–benefit profiles. The main objective of this study was to determine the distribution of patients' preferences for selected postoperative maintenance therapies. Methods: The study was a cross-sectional survey in which patients with Crohn's disease completed a standardized interview. Each participant completed 5 tasks that compared: (1) no medication and 5-ASA, (2) fish oil and 5-ASA, (3) metronidazole and 5-ASA, (4) budesonide and 5-ASA, and (5) azathioprine and 5-ASA. For each task, the minimum change in treatment effect size between the 2 treatments that the participant considered worthwhile was determined Results: The distribution of the participants' preference scores varied widely for each task. When fish oil, metronidazole, budesonide, and azathioprine were considered equally effective to 5-ASA, 92.9%, 28.8%, 38.4%, and 19% of the participants, respectively, preferred these medications relative to 5-ASA. These percentages increased to 98.4%, 54.8%, 61.9%, and 50.8%, respectively, when fish oil, metronidazole, budesonide, and azathioprine were considered to offer a 5% absolute risk reduction relative to 5-ASA. Regression analysis did not identify any clinical or demographic variables predictive of the participants' treatment preferences. Conclusions: The participants' preferences for postoperative maintenance therapies were widely distributed, and no clinical or demographic factors predicted these preferences. This emphasizes the need for effective communication between physician and patient in order to select the treatment options most consistent with a patient's informed preferences. (Inflamm Bowel Dis 2007)

Objective. To describe the extent to which patient decision aids (PtDAs) meet effectiveness standards of the International Patient Decision Aids Collaboration (IPDAS). Data sources. Five electronic databases (to July 2006) and personal contacts (to December 2006). Results. Among 55 randomized controlled trials, 38 (69%) used at least 1 measure that mapped onto an IPDAS effectiveness criterion. Measures of decision quality were knowledge scores (27 trials), accurate risk perceptions (12 trials), and value congruence with the chosen option (3 trials). PtDAs improved knowledge scores relative to usual care (weighted mean difference [WMD] = 15.2%, 95% confidence interval [CI] = 11.7 to 18.7); detailed PtDAs were somewhat more effective than simpler PtDAs (WMD = 4.6%, 95% CI = 3.0 to 6.2). PtDAs with probabilities improved accurate risk perceptions relative to those without probabilities (relative risk = 1.6, 95% CI = 1.4 to 1.9). Relative to simpler PtDAs, detailed PtDAs improved value congruence with the chosen option. Only 2 of 6 IPDAS decision process criteria were measured: feeling informed (15 trials) and feeling clear about values (13 trials). PtDAs improved these process measures relative to usual care (feeling uninformed WMD = —8.4, 95% CI = —11.9 to —4.8; unclear values WMD = —6.3, 95% CI = —10.0 to —2.7). There was no difference in process measures when detailed and simple PtDAs were compared. Conclusions. PtDAs improve decision quality and the decision process's measures of feeling informed and clear about values; however, the size of the effect varies across studies. Several IPDAS decision process measures have not been used. Future trials need to use a minimum data set of IPDAS evaluation measures. The degree of detail PtDAs require for positive effects on IPDAS criteria should be explored.

Information concerning patients' preferences for the treatment of osteoarthritis (OA) is limited. We examined patients' attitudes toward the acceptability of gastrointestinal, cardiac, and cerebrovascular events in order to obtain pain relief from OA.Patients responded to a set of threshold technique tasks. Each task described 2 treatment options, their levels of pain relief, and the risks of side effects. The risk for the side effect under investigation was then systematically increased to reveal the maximal acceptable risk increment associated with the pain reduction.Of 196 patients, 22.3% and 14.7% were unwilling to accept any additional risk of stomach bleed or heart attack/stroke for 2-point and 5-point pain reductions, respectively. Patients were willing to accept significantly more risk for a 5-point pain reduction than for a 2-point pain reduction in stomach bleed and heart attack/stroke scenarios. Patients also accepted significantly greater additional risks of stomach bleed compared to heart attack/stroke for 2-point and 5-point pain reductions.Most patients with OA are willing to accept some additional risk of stomach bleed and heart attack/stroke to gain pain relief. Patients are willing to accept greater additional risk of stomach bleed than heart attack/stroke. However, there exists considerable variation in risk-taking attitudes across patients. We recommend that clinicians examine the risk attitude and treatment preferences of each patient on an individual basis when deciding on a treatment regimen.

Preference-sensitive treatment decisions involve making value trade-offs between benefits and harms that should depend on informed patient choice. There is strong evidence that patient decision aids not only improve decision quality but also prevent the overuse of options that informed patients do not value. This paper discusses progress in implementing decision aids and the policy prospects for reaching a "tipping point" in the adoption of "informed patient choice" as a standard of practice.

Contains fulltext : 50218.pdf (Publisher’s version ) (Open Access) OBJECTIVE: To develop a set of quality criteria for patient decision support technologies (decision aids). DESIGN AND SETTING: Two stage web based Delphi process using online rating process to enable international collaboration. PARTICIPANTS: Individuals from four stakeholder groups (researchers, practitioners, patients, policy makers) representing 14 countries reviewed evidence summaries and rated the importance of 80 criteria in 12 quality domains on a 1 to 9 scale. Second round participants received feedback from the first round and repeated their assessment of the 80 criteria plus three new ones. MAIN OUTCOME MEASURE: Aggregate ratings for each criterion calculated using medians weighted to compensate for different numbers in stakeholder groups; criteria rated between 7 and 9 were retained. RESULTS: 212 nominated people were invited to participate. Of those invited, 122 participated in the first round (77 researchers, 21 patients, 10 practitioners, 14 policy makers); 104/122 (85%) participated in the second round. 74 of 83 criteria were retained in the following domains: systematic development process (9/9 criteria); providing information about options (13/13); presenting probabilities (11/13); clarifying and expressing values (3/3); using patient stories (2/5); guiding/coaching (3/5); disclosing conflicts of interest (5/5); providing internet access (6/6); balanced presentation of options (3/3); using plain language (4/6); basing information on up to date evidence (7/7); and establishing effectiveness (8/8). CONCLUSIONS: Criteria were given the highest ratings where evidence existed, and these were retained. Gaps in research were highlighted. Developers, users, and purchasers of patient decision aids now have a checklist for appraising quality. An instrument for measuring quality of decision aids is being developed.

Shared decision making is the process of interacting with patients in arriving at informed values-based choices when options have features that patients value differently. Patient decision aids (PtDAs) are evidence-based tools designed to facilitate that process. Numerous randomized trials indicate that PtDAs improve decision quality and prevent overuse of options that informed patients do not value. Therefore, they have a potential role in reducing unwarranted variations in the use of preference-sensitive health care options. However, barriers to their widespread use need to be addressed with coherent plans for ensuring good standards, improving access to PtDAs, training practitioners, testing practice models, and launching demonstration projects.

Purpose Our primary objective was to describe and compare parents' and healthcare professionals' strength of preference scores for outpatient oral antibiotic relative to inpatient parenteral antibiotic treatment for low-risk febrile neutropenic children. Our secondary objective was to identify predictors of strength of preference for oral outpatient treatment. Methods Respondents were parents of children receiving cancer chemotherapy, and pediatric oncology healthcare professionals. First, the inpatient and outpatient options were described, and the respondent indicated their initially preferred option. The respondent next ranked how important seven factors (including “fear/anxiety” and “comfort”) were in making their initial choice. The threshold technique was then used to elicit the respondent's strength of preference score for oral outpatient, relative to parenteral inpatient management. Results There were 75 parent and 42 healthcare-professional respondents. There was no significant difference (P = .08) in the proportions of parents (40 of 75; 53%) and healthcare professionals (30 of 42; 71%) who initially would choose outpatient management. For parents, stronger preference for oral outpatient therapy was associated with higher anticipated quality of life for the parent and child at home relative to hospital, lower importance rank for “fear/anxiety,” and higher importance rank for “comfort.” Conversely, for professionals, only lower importance rank for “fear/anxiety” was associated with higher strength of preference scores for outpatient oral antibiotic management. Conclusion Only 53% of parents would choose outpatient oral antibiotic management for low-risk febrile neutropenia. Predictors of strength of preference scores for outpatient oral antibiotic relative to inpatient parenteral antibiotic treatment differed between parent and professional respondents.

The purpose of this study was to explore O'Connor's four factors contributing to mothers' uncertainty concerning gastrostomy tube (G-tube) insertion in their children (lack of information; unclear value trade-offs; lack of support; social pressure) in a substitute decision-making context. Fifty mothers participated in one semi-structured interview at the time of their children's G-tube insertion. Children's ages ranged from 2 weeks to 17 years, slightly more than half were male, and most had a primary diagnosis related to a neurological (n = 27) or cardiac (n = 10) condition. Two-thirds of the mothers identified topics about which they wanted more information, the majority reported both gains and losses associated with their decision, three-quarters reported that they had received support during decision making, and half reported that they had felt pressure from family and health care professionals. Results indicate that mothers' decisions about G-tube insertion are complex and difficult. The existence and importance of O'Connor's factors in this context are confirmed by mothers' accounts. Because these factors are believed to be modifiable, health care professionals have the opportunity to potentially minimize the extent to which the factors contribute to decision uncertainly. It is recommended that health care professionals implement interventions focused on minimizing uncertainty.