Helping Families Make Difficult Choices: Creation and Implementation of a Decision Aid for Neuromuscular Scoliosis Surgery.

BACKGROUND: Decision aids serve to prepare families for a meaningful discussion with their physician during the shared decision-making (SDM) process. Although SDM processes have been used primarily in adult health care settings, we sought to develop a decision aid for use in pediatrics. The treatment of neuromuscular scoliosis was selected due to the complexity of decision making when surgery is considered. Our objective was to determine whether this tool would improve families' knowledge and satisfaction while decreasing decisional conflict. METHODS: The decision aid was created using a multistep process to provide unbiased evidence-based information about the risks and benefits of the treatment options for neuromuscular scoliosis. The initial draft was written by an orthopaedic surgeon and then formatted by a multidisciplinary group to meet international decision aid standards. The document underwent local, national, and international peer review before prospective implementation by 4 orthopaedic surgeons at a single institution. The decision aid was evaluated and revised for further use. RESULTS: Eleven children, mean age 12 years (range, 8 to 17 y), were included in the study. Nine of the 11 families opted for surgery. The mean scores on the knowledge test increased from 3.0 (range, 2 to 5) to 4.0 (range, 3 to 5) of a possible 5 points (P=0.067). The mean item score on the SDM satisfaction scale was 3.8 (range, 3.5 to 4.0). The mean score on the SURE test for decisional conflict was 3.7 (range, 3 to 4) of a maximum score of 4. The mean total score on the clinician SDM satisfaction scale was 22.5 (range, 17 to 25). CONCLUSIONS: The decision aid created for this complex decision resulted in improvements in knowledge gain, satisfaction, and decisional conflict while gaining acceptance of the physicians who utilized it. Consideration should be given to developing additional decision aids within professional societies to maximize efficiency and consensus.

"Many miles to go ": a systematic review of the implementation of patient decision support interventions into routine clinical practice.

BACKGROUND: Two decades of research has established the positive effect of using patient-targeted decision support interventions: patients gain knowledge, greater understanding of probabilities and increased confidence in decisions. Yet, despite their efficacy, the effectiveness of these decision support interventions in routine practice has yet to be established; widespread adoption has not occurred. The aim of this review was to search for and analyze the findings of published peer-reviewed studies that investigated the success levels of strategies or methods where attempts were made to implement patient-targeted decision support interventions into routine clinical settings. METHODS: An electronic search strategy was devised and adapted for the following databases: ASSIA, CINAHL, Embase, HMIC, Medline, Medline-in-process, OpenSIGLE, PsycINFO, Scopus, Social Services Abstracts, and the Web of Science. In addition, we used snowballing techniques. Studies were included after dual independent assessment. RESULTS: After assessment, 5322 abstracts yielded 51 articles for consideration. After examining full-texts, 17 studies were included and subjected to data extraction. The approach used in all studies was one where clinicians and their staff used a referral model, asking eligible patients to use decision support. The results point to significant challenges to the implementation of patient decision support using this model, including indifference on the part of health care professionals. This indifference stemmed from a reported lack of confidence in the content of decision support interventions and concern about disruption to established workflows, ultimately contributing to organizational inertia regarding their adoption. CONCLUSIONS: It seems too early to make firm recommendations about how best to implement patient decision support into routine practice because approaches that use a 'referral model' consistently report difficulties. We sense that the underlying issues that militate against the use of patient decision support and, more generally, limit the adoption of shared decision making, are under-investigated and under-specified. Future reports from implementation studies could be improved by following guidelines, for example the SQUIRE proposals, and by adopting methods that would be able to go beyond the 'barriers' and 'facilitators' approach to understand more about the nature of professional and organizational resistance to these tools. The lack of incentives that reward the use of these interventions needs to be considered as a significant impediment.

Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation.

BACKGROUND: A high quality decision requires that patients who meet clinical criteria for surgery are informed about the options (including non-surgical alternatives) and receive treatments that match their goals. The aim of this study was to evaluate the psychometric properties and clinical sensibility of a patient self report instrument, to measure the quality of decisions about total joint replacement for knee or hip osteoarthritis. METHODS: The performance of the Hip/Knee Osteoarthritis Decision Quality Instrument (HK-DQI) was evaluated in two samples: (1) a cross-sectional mail survey with 489 patients and 77 providers (study 1); and (2) a randomized controlled trial of a patient decision aid with 138 osteoarthritis patients considering total joint replacement (study 2). The HK-DQI results in two scores. Knowledge items are summed to create a total knowledge score, and a set of goals and concerns are used in a logistic regression model to develop a concordance score. The concordance score measures the proportion of patients whose treatment matched their goals. Hypotheses related to acceptability, feasibility, reliability and validity of the knowledge and concordance scores were examined. RESULTS: In study 1, the HK-DQI was completed by 382 patients (79%) and 45 providers (58%), and in study 2 by 127 patients (92%), with low rates of missing data. The DQI-knowledge score was reproducible (ICC = 0.81) and demonstrated discriminant validity (68% decision aid vs. 54% control, and 78% providers vs. 61% patients) and content validity. The concordance score demonstrated predictive validity, as patients whose treatments were concordant with their goals had more confidence and less regret with their decision compared to those who did not. CONCLUSIONS: The HK-DQI is feasible and acceptable to patients. It can be used to assess whether patients with osteoarthritis are making informed decisions about surgery that are concordant with their goals.

Factors associated with the quality of patients' surgical decisions for treatment of hip and knee osteoarthritis.

BACKGROUND: Shared decision making requires informing patients and ensuring that treatment decisions reflect their goals. It is not clear to what extent this happens for patients considering total joint replacement (TJR) for hip or knee osteoarthritis. STUDY DESIGN: We conducted a cross-sectional mail survey of osteoarthritis patients at 4 sites, who made a decision about TJR. The survey measured knowledge and goals, the decision making process, decision confidence, and decision regret. Decision quality was defined as the percentage of patients who had high knowledge scores and received treatments that matched their goals. Multivariable regression models examined factors associated with knowledge and decision quality. RESULTS: There were 382 patients who participated (78.6% response rate). Mean knowledge score was 61% (SD 20.7%). In multivariate linear regression, higher education, having TJR, and site were associated with higher knowledge. Many patients (73%) received treatments that matched their goals. Thirty-one percent of patients met our definition for high decision quality. Higher decision making process scores, higher quality of life scores, and site were associated with higher decision quality. Patients who had high decision quality had less regret (73.1% vs 58.5%, p = 0.007) and greater confidence (9.0 [SD 1.6] vs 8.2 [SD 2.3] out of 10, p < 0.001). CONCLUSIONS: A third of patients who recently made a decision about osteoarthritis treatment met both criteria for a high quality decision. Controlling for treatment, patients reporting more involvement in the decision making process, higher quality of life, and being seen at a site that uses decision aids were associated with higher decision quality.

Psychometric evaluation of a decision quality instrument for treatment of lumbar herniated disc.

STUDY DESIGN: Retrospective and prospective patient surveys and a physician survey using a sample from American Medical Association master file. OBJECTIVE: To evaluate the performance of a new instrument designed to measure the quality of decisions about treatment of herniated disc. SUMMARY OF BACKGROUND DATA: There is growing consensus on the importance of engaging and informing patients to improve the quality of significant medical decisions, yet there are no instruments currently available to measure decision quality. METHODS: The herniated disc-decision quality instrument (HD-DQI) was developed with input from clinical experts, survey research experts, and patients. The HD-DQI produces 2 scores each scaled to 0% to 100%, with higher scores indicating better quality: (1) a total knowledge score and (2) a concordance score (indicating the percentage of patients who received treatments that matched their goals). We examined hypotheses relating to the acceptability, feasibility, validity, and reliability of the instrument, using data from 3 samples. RESULTS: The HD-DQI survey was feasible to implement and acceptable to patients, with good response rates and low missing data. The knowledge score discriminated between patients who had seen a decision aid or no decision aid (55% vs. 38%, P < 0.001) and between providers and patients (73% vs. 46%, P < 0.001). The knowledge score also had good retest reliability (intraclass correlation coefficient = 0.85). Most patients (78%) received treatments that matched their goals. Patients who received treatments that matched their goals were less likely to regret the decision than those who did not (13% vs. 39%, P = 0.004). CONCLUSION: The HD-DQI met several criteria for high-quality patient-reported survey instruments. It can be used to determine the quality of decisions for treatment of herniated disc. More work is needed to examine acceptability for use as part of routine patient care.