Optimizing the Management of Spasticity in People With Spinal Cord Damage: A Clinical Care Pathway for Assessment and Treatment Decision Making From the Ability Network, an International Initiative

e18302 Background: Findings from few studies examining preferences for MM treatment are limited in application, as they are largely missing the voices of patients (PTs). The present qualitative study elucidates PT preferences, the perceived trade-offs they are willing to make, and how these may differ by line of therapy (LOT). Methods: Semi-structured phone interviews were conducted with MM PTs (front-line [FL] = 11, early relapse 1- 2 prior-lines [1/2PL] = 10) recruited via purposive sampling from targeted panels and PT groups, April-May 2018. A discussion guide was developed and a trained interviewer conducted 1-hour interviews on the diversity and valence of factors influencing how PTs evaluate potential regimens and how preferences vary by experience (i.e., LOT). Interviews were audio recorded and transcribed, responses coded, and content analysis performed to identify key themes emerging from textual data. Results: The sample was 42% male, mean age 64 years, with mean 58 months since diagnosis. Three key themes were identified. Firstly, treatment decision-making, revealed that trust in one’s health care provider (HCP) was a potent influence on treatment choice. Whereas FL PTs reported often only one option is offered and rely on HCP to make decisions, 1/2PL PTs consider other sources of information and engage in more shared decision-making. Secondly, expectations about treatment, illustrated that HCPs discuss important factors, e.g., efficacy and tolerability, in general terms with FL PTs and provide more details to 1/2PL PTs. Lastly, “ top of mind” factors that influenced treatment decisions, effectiveness, followed by side effects, emerged as the greatest influences on preference, although 1/2PL PTs reported less concern with side effects than FL PTs. Relatedly, quality of life was described as salient; the lived experience of treatment was often mentioned within the context of side effects. Conclusions: The way PTs construct, prioritize, and communicate about treatment when assessing “benefit-risk” is a dynamic process, based on where PTs are in their treatment journey. By examining treatment preferences grounded in PTs’ lived and changing experiences with MM, the findings may contribute to better PT-HCP engagement through treatment decision-making and improve clinical care.

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The case against ‘the evidence’: A different perspective on evidence-based medicine

The British Journal of Psychiatry ◽

10.1192/bjp.180.1.8 ◽

2002 ◽

Vol 180 (1) ◽

pp. 8-12 ◽

Cited By ~ 98

Author(s):

D. D. R. Williams ◽

Jane Garner

Keyword(s):

Decision Making ◽

Clinical Practice ◽

Evidence Based Medicine ◽

Clinical Care ◽

Treatment Decision ◽

Evidence Based ◽

Treatment Decision Making ◽

Critical Commentary ◽

Evidenced Based ◽

Based Medicine

BackgroundAn evidenced-based approach to psychiatry is playing an increasingly prominent role in treatment decision-making for individual patients and for populations. Many doctors are now critical of the emphasis being placed on ‘the evidence’ and concerned that clinical practice will become more constrained.AimsTo demonstrate that evidence-based medicine is not new, sources of evidence are limited and psychosocial aspects of medicine are neglected in this process.MethodSome of the literature is reviewed. Ideas and arguments are synthesised into a critical commentary.ResultsThese are considered under four headings: evidence-based medicine is not new; what evidence is acceptable; the doctor as therapist; and the emergence of a new utilitarian orthodoxy.ConclusionsIt is agreed that a degree of professional consensus is necessary. However, too great an emphasis on evidence-based medicine oversimplifies the complex and interpersonal nature of clinical care.

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Clinical Application of the 70-Gene Profile: The MINDACT Trial

Journal of Clinical Oncology ◽

10.1200/jco.2007.14.3222 ◽

2008 ◽

Vol 26 (5) ◽

pp. 729-735 ◽

Cited By ~ 351

Author(s):

Fatima Cardoso ◽

Laura Van't Veer ◽

Emiel Rutgers ◽

Sherene Loi ◽

Stella Mook ◽

...

Keyword(s):

Breast Cancer ◽

Risk Assessment ◽

Decision Making ◽

Early Breast Cancer ◽

Treatment Decision ◽

Clinical Validation ◽

Gene Profile ◽

Node Negative ◽

Treatment Decision Making ◽

Assessment And Treatment

The 70-gene profile is a new prognostic tool that has the potential to greatly improve risk assessment and treatment decision making for early breast cancer. Its prospective validation is currently ongoing through the MINDACT (Microarray in Node-Negative Disease May Avoid Chemotherapy) trial, a 6,000-patient randomized, multicentric trial. This article reviews the several steps in the development of the profile from its discovery to its clinical validation.

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Standardizing the Diagnostic and Therapeutic Approach to Newly Diagnosed Children with ITP: An ITP Consortium of North America (ICON) Quality Improvement Initiative

Blood ◽

10.1182/blood-2021-146936 ◽

2021 ◽

Vol 138 (Supplement 1) ◽

pp. 755-755

Author(s):

Alexander W. Rankin ◽

Sherif M. Badawy ◽

Carolyn M. Bennett ◽

Taylah Buissereth ◽

Kristen Campbell ◽

...

Keyword(s):

Decision Making ◽

Board Of Directors ◽

Research Funding ◽

Care Pathway ◽

Clinical Care ◽

Practice Variation ◽

Newly Diagnosed ◽

Advisory Committees ◽

Bleeding Score ◽

Clinical Care Pathway

Abstract BACKGROUND Pediatric immune thrombocytopenia (ITP) is an acquired disorder of platelet destruction that is associated with an increased risk of bleeding. Despite published guidelines for the management of ITP, the available evidence is of low grade, leading to practice variation in different settings. The use of validated bleeding scores to guide clinical decision making is inconsistent. In addition, many children are initially treated with medications despite the recommendation for observation in newly diagnosed children with ITP and no or mild bleeding symptoms. This approach leads to over-utilization of healthcare resources including hospitalizations, medication administration, and medical encounters for management-related side effects. In 2020, a quality improvement (QI) project of the Pediatric ITP Consortium of North America (ICON) was initiated to improve consistency in clinical practice at ICON sites using national ITP guidelines. DESIGN/METHODS Within the ICON QI subcommittee, a standardized clinical care pathway (Figure 1) for newly diagnosed childhood ITP was developed based on the American Society of Hematology (ASH) 2019 guidelines. The goal was to unify approach to management, decrease practice variation, identify and learn from deviations in decision making, and decrease resource utilization by increasing observation rates in low-risk pediatric ITP patients. Site investigators shared the care pathway to update institutional providers on national guidelines. For Aim 1 of this project, sites completed a multi-center, retrospective analysis documenting the pre-QI pathway management of children, ages 1-16 years, diagnosed with ITP from January to December 2019. Statistical analysis was performed using R version 4.0.2. For Aim 2, after local dissemination and education of the clinical care pathway, clinicians at all participating sites will review the pathway at the time of managing newly diagnosed children and then complete a short survey documenting a bleeding score and management decisions. RESULTS Current data from the retrospective review is summarized in Figure 1. 98 patients across four ICON institutions are included in this analysis. The median age at diagnosis was 6 years (IQR 2.7, 9.2) with 61% being male. 43 (44%) patients had their first hematology encounter in the inpatient setting, 40 (41%) in the outpatient clinic, and 14 (14%) in the emergency room. Buchanan and Adix bleeding scores were obtained from only one patient (1%) at diagnosis. Treatment strategies varied including observation in 47 (48%) patients, IVIG in 40 (41%), corticosteroids in 9 (9%), and anti-D globulin in 3 (3%). 53 (54%) patients were admitted at the time of diagnosis. The prospective QI pathway is being utilized by six ICON institutions and 20 patients have been followed on the pathway since November 2020. An additional seven sites are in various phases of study activation. DISCUSSION Evidence-based ITP guidelines and an expert consensus report have been recently published. For children with newly diagnosed ITP and a platelet count <20 x 10 9/L who have no or mild bleeding, ASH guidelines suggest against admission to the hospital and suggest observation rather than treatment with corticosteroids. Retrospective analysis of the management at four ICON centers demonstrates the variation in approach to treatment. However, although guidelines suggest initial management based on objective assessment of bleeding symptoms, only one patient (1%) had a documented bleeding score at presentation, suggesting a lack of a standard approach to management and practice variation. These data support the need for this quality initiative, which involves clinicians reviewing the pathway while managing patients and answering a survey at the time of clinical visits to report on bleeding symptoms and management. This initiative will be expanded to include a total of 13 institutions across the United States. Data will be analyzed every 1-2 years and changes will be made to the pathway with the goal of improving care. Further quality initiatives may help to standardize the management approach of pediatric ITP patients and optimize health outcomes in this patient population. Figure 1 Figure 1. Disclosures Badawy: Bluebird Bio Inc: Consultancy; Sanofi Genzyme: Consultancy; Vertex Pharmaceuticals Inc: Consultancy. Grace: Novartis: Research Funding; Dova: Membership on an entity's Board of Directors or advisory committees, Research Funding; Agios: Research Funding; Principia: Membership on an entity's Board of Directors or advisory committees. Nakano: Novartis: Consultancy.

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