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      Shared decision-making for biologic treatment of autoimmune disease: influence on adherence, persistence, satisfaction, and health care costs

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          Shared decision-making (SDM), a process whereby physicians and patients collaborate to select interventions, is not well understood for biologic treatment of autoimmune conditions.


          This was a cross-sectional survey of adults initiating treatment for Crohn’s disease or ulcerative colitis (inflammatory bowel disease, IBD) or psoriatic arthritis or rheumatoid arthritis (RA/PA). Survey data were linked to administrative claims for 6 months before (baseline) and after (follow-up) therapy initiation. Measures included the Shared Decision Making Questionnaire, Patient Activation Measure (PAM), Morisky Medication Adherence Scale (MMAS), general health, and treatment satisfaction. Claims-based Quan-Charlson comorbidity scores, persistence, medication possession ratio (MPR), and health care costs were examined. Patients were compared by participation (SDM) and nonparticipation (non-SDM) in SDM.


          Among 453 respondents, 357 were eligible, and 306 patients (204 RA/PA and 102 IBD) were included in all analyses. Overall (n=357), SDM participants (n=120) were more often females (75.0% vs 62.5%, P=0.018), had lower health status (48.0 vs 55.4, P=0.005), and higher Quan–Charlson scores (1.0 vs 0.7, P=0.035) than non-SDM (n=237) participants. Lower MMAS scores (SDM 0.17 vs non-SDM 0.41; P<0.05) indicated greater likelihood of adherence; SDM participants also reported higher satisfaction with medication and had greater activation (PAM: SDM vs non-SDM: 66.9 vs 61.6; P<0.001). Mean MPR did not differ, but persistence was longer among SDM participants (111.2 days vs 102.2 days for non-SDM; P=0.029). Costs did not differ by SDM status overall, or among patients with RA/PA. The patients with IBD, however, experienced lower ( P=0.003) total costs ($9,404 for SDM vs $25,071 for non-SDM) during follow-up.


          This study showed greater likelihood of adherence and satisfaction for patients who engaged in SDM and reduced health care costs among patients with IBD who engaged in SDM. This study provides a basis for defining SDM participation and detecting differences by SDM participation for biologic treatment selection for autoimmune conditions.

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          Most cited references 28

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          Concurrent and predictive validity of a self-reported measure of medication adherence.

          Adherence to the medical regimen continues to rank as a major clinical problem in the management of patients with essential hypertension, as in other conditions treated with drugs and life-style modification. This article reviews the psychometric properties and tests the concurrent and predictive validity of a structured four-item self-reported adherence measure (alpha reliability = 0.61), which can be easily integrated into the medical visit. Items in the scale address barriers to medication-taking and permit the health care provider to reinforce positive adherence behaviors. Data on patient adherence to the medical regimen were collected at the end of a formalized 18-month educational program. Blood pressure measurements were recorded throughout a 3-year follow-up period. Results showed the scale to demonstrate both concurrent and predictive validity with regard to blood pressure control at 2 years and 5 years, respectively. Seventy-five percent of the patients who scored high on the four-item scale at year 2 had their blood pressure under adequate control at year 5, compared with 47% under control at year 5 for those patients scoring low (P less than 0.01).
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            Development and testing of a short form of the patient activation measure.

            The Patient Activation Measure (PAM) is a 22-item measure that assesses patient knowledge, skill, and confidence for self-management. The measure was developed using Rasch analyses and is an interval level, unidimensional, Guttman-like measure. The current analysis is aimed at reducing the number of items in the measure while maintaining adequate precision. We relied on an iterative use of Rasch analysis to identify items that could be eliminated without loss of significant precision and reliability. With each item deletion, the item scale locations were recalibrated and the person reliability evaluated to check if and how much of a decline in precision of measurement resulted from the deletion of the item. The data used in the analysis were the same data used in the development of the original 22-item measure. These data were collected in 2003 via a telephone survey of 1,515 randomly selected adults. Principal Findings. The analysis yielded a 13-item measure that has psychometric properties similar to the original 22-item version. The scores for the 13-item measure range in value from 38.6 to 53.0 (on a theoretical 0-100 point scale). The range of values is essentially unchanged from the original 22-item version. Subgroup analysis suggests that there is a slight loss of precision with some subgroups. The results of the analysis indicate that the shortened 13-item version is both reliable and valid.
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              Outcomes associated with matching patients' treatment preferences to physicians' recommendations: study methodology

              Background Patients often express strong preferences for the forms of treatment available for their disease. Incorporating these preferences into the process of treatment decision-making might improve patients' adherence to treatment, contributing to better outcomes. We describe the methodology used in a study aiming to assess treatment outcomes when patients' preferences for treatment are closely matched to recommended treatments. Method Participants included patients with moderate and severe psoriasis attending outpatient dermatology clinics at the University Medical Centre Mannheim, University of Heidelberg, Germany. A self-administered online survey used conjoint analysis to measure participants' preferences for psoriasis treatment options at the initial study visit. Physicians' treatment recommendations were abstracted from each participant's medical records. The Preference Matching Index (PMI), a measure of concordance between the participant's preferences for treatment and the physician's recommended treatment, was determined for each participant at t1 (initial study visit). A clinical outcome measure, the Psoriasis Area and Severity Index, and two participant-derived outcomes assessing treatment satisfaction and health related quality of life were employed at t1, t2 (twelve weeks post-t1) and t3 (twelve weeks post-t2). Change in outcomes was assessed using repeated measures analysis of variance. The association between participants' PMI scores at t1 and outcomes at t2 and t3 was evaluated using multivariate regressions analysis. Discussion We describe methods for capturing concordance between patients' treatment preferences and recommended treatment and for assessing its association with specific treatment outcomes. The methods are intended to promote the incorporation of patients' preferences in treatment decision-making, enhance treatment satisfaction, and improve treatment effectiveness through greater adherence.

                Author and article information

                Patient Prefer Adherence
                Patient Prefer Adherence
                Patient Preference and Adherence
                Patient preference and adherence
                Dove Medical Press
                18 May 2017
                : 11
                : 947-958
                [1 ]Janssen Global Commercial Strategic Organization – Immunology, Raritan, NJ
                [2 ]Health Economics and Outcomes Research, Optum Inc., Eden Prairie, MN
                [3 ]Health Economics and Outcomes Research, Janssen Scientific Affairs, LLC, Raritan, NJ, USA
                Author notes
                Correspondence: Phaedra T Johnson, Health Economics and Outcomes Research, Optum Inc., 11000 Optum Circle, Eden Prairie, MN 55344, USA, Tel +1 952 205 7737, Email phaedra.johnson@
                © 2017 Lofland et al. This work is published and licensed by Dove Medical Press Limited

                The full terms of this license are available at and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

                Original Research


                shared decisionmaking, biologic therapy, cross-sectional survey, autoimmune disease


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