Browsing by Author "Kinnett, Kathi"

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    Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION
    (Springer Nature, 2022) Villa, Chet; Auerbach, Scott R.; Bansal, Neha; Birnbaum, Brian F.; Conway, Jennifer; Esteso, Paul; Gambetta, Katheryn; Hall, E. Kevin; Kaufman, Beth D.; Kirmani, Sonya; Lal, Ashwin K.; Martinez, Hugo R.; Nandi, Deipanjan; O’Connor, Matthew J.; Parent, John J.; Raucci, Frank J.; Shih, Renata; Shugh, Svetlana; Soslow, Jonathan H.; Tunuguntla, Hari; Wittlieb‑Weber, Carol A.; Kinnett, Kathi; Cripe, Linda; Pediatrics, School of Medicine
    Cardiac disease has emerged as a leading cause of mortality in Duchenne muscular dystrophy in the current era. This survey sought to identify the diagnostic and therapeutic approach to DMD among pediatric cardiologists in Advanced Cardiac Therapies Improving Outcomes Network. Pediatric cardiology providers within ACTION (a multi-center pediatric heart failure learning network) were surveyed regarding their approaches to cardiac care in DMD. Thirty-one providers from 23 centers responded. Cardiac MRI and Holter monitoring are routinely obtained, but the frequency of use and indications for ordering these tests varied widely. Angiotensin converting enzyme inhibitor and aldosterone antagonist are generally initiated prior to onset of systolic dysfunction, while the indications for initiating beta-blocker therapy vary more widely. Seventeen (55%) providers report their center has placed an implantable cardioverter defibrillator in at least 1 DMD patient, while 11 providers (35%) would not place an ICD for primary prevention in a DMD patient. Twenty-three providers (74%) would consider placement of a ventricular assist device (VAD) as destination therapy (n = 23, 74%) and three providers (10%) would consider a VAD only as bridge to transplant. Five providers (16%) would not consider VAD at their institution. Cardiac diagnostic and therapeutic approaches vary among ACTION centers, with notable variation present regarding the use of advanced therapies (ICD and VAD). The network is currently working to harmonize medical practices and optimize clinical care in an era of rapidly evolving outcomes and cardiac/skeletal muscle therapies.
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    Participant Experiences with a New Online Modified-Delphi Approach for Engaging Patients and Caregivers in Developing Clinical Guidelines
    (2019) Armstrong, Courtney; Grant, Sean; Kinnett, Kathi; Denger, Brian; Martin, Ann; Coulter, Ian; Booth, Marika; Khodyakov, Dmitry; Social and Behavioral Sciences, School of Public Health
    Background Patient engagement in clinical practice guideline (CPG) development has increased significantly in recent years. However, only a few patients and caregivers join CPG development groups. Objective To describe participant experiences with a novel online, scalable approach for patient and caregiver engagement in CPG development. Design We developed and tested the RAND/PPMD Patient-Centeredness Method (RPM), a novel online modified-Delphi approach to patient engagement in CPG development that consists of an optional idea generation round and two rating rounds interspersed with an online discussion round. Setting and Participants Using the online ExpertLens™ system, we ran 2 concurrent panels of patients and caregivers of individuals with Duchenne Muscular Dystrophy (DMD). Main Outcome Measures We surveyed all 95 panel participants about their participation and satisfaction with the process. We also conducted telephone interviews with 25 participants. Results Participants expressed satisfaction with various ExpertLens™ features, noting that the system fostered lively interaction among them. Panelists also appreciated participating in an educational, interactive and convenient discussion forum that allowed them to share their opinions on the importance and acceptability of different recommendations. The RPM was viewed as empowering by patients and their caregivers who felt it would be useful for CPG developers. Discussion and Conclusion The results of our study show the overall participant satisfaction with a novel, scalable, online approach to engaging patients and caregivers in CPG development, which allows them to share their perspectives and lived experiences using a rigorous, systematic and iterative way that is similar to how clinicians provide their input.
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    Patient and caregiver perspectives on guideline adherence: the case of endocrine and bone health recommendations for Duchenne muscular dystrophy
    (BioMed Central, 2019-08-20) Denger, Brian; Kinnett, Kathi; Martin, Ann; Grant, Sean; Armstrong, Courtney; Khodyakov, Dmitry; Social and Behavioral Sciences, School of Public Health
    BACKGROUND: Clinical care guidelines are typically developed by clinicians and researchers. Including patient and caregiver voices in guideline development may help create guidelines that are more useful for patients and consequently improve their guideline adherence. Although there is substantial research on the factors the affect providers' adherence to guidelines, there is less research on the factors that affect patients' compliance with guideline recommendations, especially among those with rare disorders. The purpose of this study is to explore factors that are likely to affect patient/caregiver adherence to endocrine and bone health recommendations for Duchenne Muscular Dystrophy (DMD). To do so, we used qualitative data collected as part of the study designed to develop, implement, and evaluate a new online, modified-Delphi approach to engaging patients with rare diseases and their caregivers in guideline development, using care guidelines for DMD as a case study. METHODS: We thematically analyzed qualitative data collected from 95 adults with DMD and their caregivers who participated in at least one round of our online Modified-Delphi panel process. Participants rated and commented on the patient-centeredness of 19 recommendations about vertical growth, weight management, bone health, and delayed puberty included in the 2018 DMD care considerations. Patient-centeredness was operationalized as the importance and acceptability of care recommendations. RESULTS: Thematic analyses revealed six factors that affect guideline adherence from the patient/caregiver perspective: content and format of recommendations, patient and provider characteristics, and social and financial factors. CONCLUSIONS: This study used a novel approach to exploring patient and caregiver perspectives on factors that may affect guideline adherence. The six factors identified by DMD patients and caregivers are similar to the factors affecting provider adherence and are not limited to DMD. Understanding consistency between provider- and patient/caregiver-identified barriers to following guideline recommendations can lead to developing more successful interventions for increasing guideline adherence.
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    The RAND/PPMD Patient-Centeredness Method: a novel online approach to engaging patients and their representatives in guideline development
    (2019) Khodyakov, Dmitry; Denger, Brian; Grant, Sean; Kinnett, Kathi; Armstrong, Courtney; Martin, Ann; Peay, Holly; Coulter, Ian; Hazlewood, Glen; Social and Behavioral Sciences, School of Public Health
    Although clinical practice guidelines (CPGs) provide recommendations for how best to treat a typical patient with a given condition, patients and their representatives are not always engaged in CPG development. Despite the agreement that patient participation may improve the quality and utility of CPGs, there is no systematic, scalable method for engaging patients and their representatives, as well as no consensus on what exactly patients and their representatives should be asked to do during CPG development. To address these gaps, an interdisciplinary team of researchers, patient representatives, and clinicians developed the RAND/PPMD Patient-Centeredness Method (RPM) - a novel online approach to engaging patients and their representatives in CPG development. The RPM is an iterative approach that allows patients and their representatives to provide input by (1) generating ideas; (2) rating draft recommendations on two criteria (importance and acceptability); (3) explaining and discussing their ratings with other participants using online, asynchronous, anonymous, moderated discussion boards, and (4) revising their responses if needed. The RPM was designed to be consistent with the RAND/UCLA Appropriateness Method used by clinicians and researchers to develop CPG, while helping patients and their representative rate outcome importance and recommendation acceptability - two key components of the GRADE Evidence to Decision (EtD) framework. With slight modifications, the RPM has the potential to explore consensus among key stakeholders on other dimensions of the EtD, including feasibility, equity, and resource use.