scholarly journals POS0063-PARE IMPLEMENTING SHARED DECISION MAKING TO ADVANCE PATIENT CENTRED RHEUMATOID ARTHRITIS CARE: A ROLE FOR A PATIENT ORGANISATION

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 238.1-238
Author(s):  
P. Pennings Msc ◽  
H. Voogdt-Pruis ◽  
B. Maat ◽  
T. Foekens ◽  
L. J. Kranenburg - van Koppen ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Treatment Options ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Medical Centre ◽  
Shared Decision ◽  
Patient Reported ◽  
Hospital Teams ◽  
Implementation Programme

Background:In rheumatoid arthritis (RA) care, patients and professionals face treatment decisions regularly due to the high number of treatment options, the chronic character of the disease and challenges around multi-morbidity. Recent studies have underlined the added value of shared decision making (SDM) between patients and professionals in RA care for health outcomes (i.e. disease activity, pain and joint damage) 1-4. Therefore, effort is needed to facilitate the implementation of SDM in daily clinical practice in order to advance patient centred RA care.Objectives:The aim of this implementation project was to improve SDM about treatment options for patients with RA. In addition the use of (Patient Reported) Outcome Measures in the process of SDM was taken into account.Methods:An implementation programme was developed by the National Association ReumaZorg Nederland (RZN) in co-creation with patientpartners and RMD professionals. Three hospital departments of rheumatology in the Netherlands participated in the project between January 2020 and March 2021. The implementation of SDM was supported by a project team of RZN.Results:The implementation programme started with the recording of RMD consultations in three participating departments of rheumatology. The consultations were then evaluated on the process of SDM (OPTION5) and discussed during the training of professionals that followed. Three observed improvements in SDM in RA care were: a. A more explicit introduction of choice for a patient is needed during the consultation; b. Tasks within the process of SDM should be allocated clearly among RMS specialists and nurses working together, in order to avoid unnecessary repetition of the same - or even inconsistent information; c. Besides the use of (patient reported) outcome measures in the SDM process, it is also important to include patients’ values (what matters to them?) when deciding on the best fitting treatment option. After the training, implementation support for SDM was given and aids to support the SDM process (i.e. redesign of health care processes, task allocation, hand card with explanation of the 4 steps of SDM) were developed. The implementation programme was tailored to the needs and stage of change for each hospital. Implementation materials for the hospital teams were developed in co-creation with patientpartners and the professionals. At the end of the project, a second set of consultations was recorded and evaluated on SDM. The hospital teams concluded that a continuous improvement cycle is needed to further enhance SDM.Conclusion:A continuous implementation programme on shared decision making could stimulate the enhancement of patient centred care in daily practice. Patient organisations could take a significant role in such a programme.References:[1]Pablos JL et al. Patient. 2020 Feb;13(1):57-69.[2]Fautrel B et al. Rheumatol Int. 2018 Jun;38(6):935-947. doi: 10.1007/s00296-018-4005-5.[3]Mathijssen EGE et al. RMD Open. 2020 Jan;6(1):e001121. doi: 10.1136/rmdopen-2019-001121.[4]Nota, I. 2017. Shared Decision-Making in rheumatology: What matters to patients? Thesis, University of Twente.Acknowledgements:This project of the National Association ReumaZorg Nederland (RZN) was made possible thanks to the effort of the following patientpartners, RMD specialists and researchers within the field of RMDs:Helene R Voogdt-Pruis, (AP PhD, RZN projectmanager Shared Decision Making within RMD care), Bertha Maat (RZN patient research partner), Theo Foekens (RZN patient research partner), Laura Kranenburg-van Koppen (MD, Msc, rheumatologist Erasmus and IJsselland Medical Centre), Annelieke Pasma (PhD, researcher Erasmus Medical Centre), Jos Hoes (MD PhD, rheumatologist Bravis Medical Centre), Inge Schoonen-Nuijten (RMD nurse, Bravis Medical Centre), Marijke van den Dikkenberg, (MSc, researcher Maasstad Medical Centre), Natalja Basoski (MD MSc, rheumatologist Maasstad Medical Centre), Angelique Weel-Koenders (Prof. Dr., rheumatologist Maasstad Medical Centre, Erasmus University), Gerardine Willemsen- de Mey (MSc, Chair of RZN).Disclosure of Interests:None declared.

scholarly journals Lessons in Integrating Shared Decision-Making Into Cancer Care

2018 ◽  
Vol 14 (4) ◽  
pp. 229-235 ◽  
Author(s):  
Karina Dahl Steffensen ◽  
Mette Vinter ◽  
Dorthe Crüger ◽  
Kathrina Dankl ◽  
Angela Coulter ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Care Delivery ◽  
Decision Aids ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Shared Decision ◽  
Care Needs ◽  
Patient Reported

The benefits of shared decision-making (SDM) in health care delivery are well documented, but implementing SDM at the institutional level is challenging, particularly when patients have complex illnesses and care needs, as in cancer. Denmark’s Lillebaelt Hospital, in creating The Patient’s Cancer Hospital in Vejle, has learned key lessons in implementing SDM so that the organization’s culture is actually being transformed. In short, SDM is becoming part of the fabric of care, not a mere add-on to it. Specifically, the hospital chose and structured its leadership to ensure that SDM is constantly championed. It organized multiple demonstration projects focused on use of decision aids, patient-reported outcome measures, and better communication tools and practices. It designed programs to train clinicians in the art of doctor-patient communication. It used research evidence to inform development of the decision aids that its clinicians use with their patients. And it rigorously measured SDM performance in an ongoing fashion so that progress could be tracked and refined to ensure continuous improvement. Initial data on the institution’s SDM initiatives from the Danish national annual survey of patients’ experiences show substantial progress, thereby motivating Lillebaelt to reassert its commitment to the effort, to share what it has learned, and to invite dialogue among all cancer care organizations as they seek to fully integrate SDM in daily clinical practice.

scholarly journals Effect of a multilevel implementation programme on shared decision-making in breast cancer care

BJS Open ◽  
2020 ◽  
Vol 5 (2) ◽  
Author(s):  
H van Veenendaal ◽  
H R Voogdt-Pruis ◽  
D T Ubbink ◽  
C G J M Hilders
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Treatment Options ◽  
Linear Regression Analysis ◽  
Shared Decision ◽  
Breast Cancer Care ◽  
Multiple Treatment ◽  
Implementation Programme

Abstract Background Women with newly diagnosed breast cancer face multiple treatment options. Involving them in a shared decision-making (SDM) process is essential. The aim of this study was to evaluate whether a multilevel implementation programme enhanced the level of SDM behaviour of clinicians observed in consultations. Methods This before–after study was conducted in six Dutch hospitals. Patients with breast cancer who were facing a decision on surgery or neoadjuvant systemic treatment between April 2016 and September 2017 were included, and provided informed consent. Audio recordings of consultations made before and after implementation were analysed using the five-item Observing Patient Involvement in Decision-Making (OPTION-5) instrument to assess whether clinicians adopted new behaviour needed for applying SDM. Patients scored their perceived level of SDM, using the nine-item Shared Decision-Making Questionnaire (SDM-Q-9). Hospital, duration of the consultation(s), age, and number of consultations per patient that might influence OPTION-5 scores were investigated using linear regression analysis. Results Consultations of 139 patients were audiotaped, including 80 before and 59 after implementation. Mean (s.d.) OPTION-5 scores, expressed on a 0–100 scale, increased from 38.3 (15.0) at baseline to 53.2 (14.8) 1 year after implementation (mean difference (MD) 14.9, 95 per cent c.i. 9.9 to 19.9). SDM-Q-9 scores of 105 patients (75.5 per cent) (72 before and 33 after implementation) were high and showed no significant changes (91.3 versus 87.6; MD −3.7, −9.3 to 1.9). The implementation programme had an association with OPTION-5 scores (β = 14.2, P < 0.001), hospital (β = 2.2, P = 0.002), and consultation time (β = 0.2, P < 0.001). Conclusion A multilevel implementation programme supporting SDM in breast cancer care increased the adoption of SDM behaviour of clinicians in consultations.

scholarly journals Predictors of Patient-Reported Communication with Their Health Care Team about New Treatment Options for Chronic Lymphocytic Leukemia

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 5870-5870
Author(s):  
Julie Olson ◽  
Joanne S. Buzaglo ◽  
Shauna McManus ◽  
Linda House ◽  
Thomas W. LeBlanc
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Shared Decision Making ◽  
Treatment Options ◽  
Cost Of Care ◽  
Lymphocytic Leukemia ◽  
Shared Decision ◽  
Patient Reported ◽  
New Treatment ◽  
New Treatments

Abstract Background: Chronic lymphocytic leukemia (CLL) progresses with time and, as a result, patients can be challenged by considering multiple treatment options. Importantly, over the past decade, an array of new CLL treatments have emerged, including targeted therapy and immunotherapy options. Health care teams, therefore, play an important role in discussing new treatments with patients to ensure shared decision making. A substantial proportion of patients, however, report not discussing newly approved treatment options with clinicians. Our goal was to understand the sociodemographic and clinical factors associated with doctors' likelihood of discussing new treatment options in a national sample of CLL patients. Methods: Using data from the Cancer Support Community's Cancer Experience Registry®, our analytic sample included 187 participants who report CLL as their primary diagnosis. The dependent variable in all analyses was a dichotomous, patient-reported indicator of whether or not their doctor discussed new treatment options (e.g., ibrutinib, idealisib, obinutuzumab) with them. Our independent variables included: 1) sociodemographic characteristics: age, gender, education, urbanicity, and race; 2) clinical factors: genetic risk, treatment status, years since diagnosis, CLL risk (low, intermediate or high; based on patient report of how doctor estimated their CLL may progress over time), and relapse; and 3) patient-clinician communication: patient involvement in treatment decision making, patient's consideration of financial cost of care, discussion of health care team's goals for treatment, and discussion of patient's goals for treatment. Our analyses proceeded in two steps. First, we descriptively compared patients who discuss new treatments with their doctors and those who do not using Student's t-test. Second, multivariate logistic regression models estimated likelihood of doctor discussing new treatment options by sociodemographic, clinical, and patient-provider characteristics. Multiple imputation accounted for missingness in our regression models. Results: Our sample was 48% female, 96% White, and averaged 62 years of age (SD = 10), with a mean time since diagnosis of 7 years (SD = 5). 18% of our sample reported having a deletion 17p, 22% reported having a deletion 13q, 22% were currently receiving chemotherapy, and 16% reported recurrence of their CLL. 58% of our sample reported discussing new treatment options with their doctor. Descriptively, patients who report higher frequencies of cancer recurrence, intermediate or high risk of their CLL, genetic testing results indicative of deletion 17p and deletion 13q, current chemotherapy, greater involvement in treatment decision making, and lower consideration of financial cost of care were significantly more likely to discuss new treatment options with their doctors. In multivariate models, controlling for all sociodemographic, clinical, and patient-clinician characteristics, our results highlight a greater likelihood of discussing new options among patients who have experienced a relapse of their CLL. Conclusion: Nearly half of our CLL patients did not report discussing new treatment options with their clinician, raising concerns about whether shared decision-making is really taking place in the era of novel CLL therapeutics. While those who experience a relapse are significantly more likely to discuss new treatment options, unmet needs remain. As new treatments are incorporated into standard of care, greater efforts are needed to enhance shared decision-making at all points of care. Disclosures Buzaglo: Vector Oncology: Employment.

scholarly journals Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
I. E. H. Kremer ◽  
P. J. Jongen ◽  
S. M. A. A. Evers ◽  
E. L. J. Hoogervorst ◽  
W. I. M. Verhagen ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Disease Modifying Drugs ◽  
Patient Decision ◽  
Further Development

Abstract Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.

scholarly journals Patient and physician perspectives guiding intra-articular treatment choice in knee osteoarthritis: stakeholders are aligned on treatment priorities but have different assessments of treatment effect

2021 ◽  
pp. jisakos-2020-000578
Author(s):  
Vandana Menon ◽  
Caroline Huber ◽  
Alexandria Portelli ◽  
Marissa Baker-Wagner ◽  
Scott Kelley ◽  
...  
Keyword(s):  
Decision Making ◽  
Knee Osteoarthritis ◽  
Shared Decision Making ◽  
Symptom Relief ◽  
Activity Level ◽  
Shared Decision ◽  
Treatment Needs ◽  
Knee Oa ◽  
Patient Reported ◽  
Selection Factors

ObjectivesKnee osteoarthritis (OA) is a leading cause of health-related disability. In the absence of curative non-operative therapies, treatment goals are limited to symptom relief. Data are limited on how patients and physicians prioritise available treatment options. We assessed patients’ preferences for and physicians’ attitudes towards intra-articular treatments including corticosteroids (IACS), an extended-release corticosteroid (TA-ER) and hyaluronic acids (IAHA).MethodsWe conducted a prospective, IRB-exempt, double-blind survey of patients with and providers who treat knee OA. Respondents were required to have received or prescribed TA-ER in a non-trial setting. We evaluated patients’ OA history, impact of knee OA and treatment preferences, and physicians’ decision-making and prescribing experiences.ResultsOf the 97 patient participants, mean age was 56 years, 70.0% were women, 75.0% had bilateral knee OA and 46.4% were diagnosed over 5 years ago. Of the 50 physician participants, 34.0% were rheumatologists, 42.0% were orthopaedic surgeons and 60.0%, on average, treat 50+ patients with knee OA per month. Treatment selection factors considered ‘very important’ to patients and physicians included disease severity (88.7%, 82.0%), impact on quality of life (88.7%, 72.0%), disease extent (84.5%, 54.0%) and activity level (80.4%, 64.0%). A majority (93.8%) of patients indicated moderate to severe difficulty with their knees. Fewer patients (76.3%) reported shared decision making compared with physicians (92.0%). Half (50.5%) of the patients reported that they experienced months of pain relief with TA-ER, 27.7% with IACS and 18.8% with IAHA. Physician assessments were consistent but estimated a greater duration of treatment effects than that reported by patients across all therapies.ConclusionWhile knee OA has a tremendous impact on patients, there are significant unmet treatment needs. The increasing use of patient-reported outcomes will allow patients and physicians to track pain and functional status over time and across therapies, improving shared decision-making.

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