Browsing by Author "Khodyakov, Dmitry"

Now showing 1 - 5 of 5
  • Thumbnail Image
    Item
    Online Modified-Delphi: a Potential Method for Continuous Patient Engagement Across Stages of Clinical Practice Guideline Development
    (Springer, 2021) Grant, Sean; Armstrong, Courtney; Khodyakov, Dmitry; Social and Behavioral Sciences, School of Public Health
  • Thumbnail Image
    Item
    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.
  • Thumbnail Image
    Item
    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.
  • Thumbnail Image
    Item
    Prioritizing Needs and Outcomes for Adolescent Substance Use Treatment Planning: An Online Modified-Delphi Process
    (Wolters Kluwer, 2020-07-01) Grant, Sean; Pedersen, Eric R.; Hunter, Sarah B.; Khodyakov, Dmitry; Griffin, Beth Ann; Social and Behavioral Sciences, School of Public Health
    Key stakeholders can have differing views about which information is essential to inform placement decisions for all patients. This study examined consensus across stakeholder groups on the most important individual needs and treatment outcomes for informing decisions specifically about the level of care for an adolescent in substance use treatment. Methods: We conducted an online modified-Delphi process with treatment providers, policymakers, researchers, and parents of adolescents who have received substance use treatment. Participants rated 48 individual needs from the Global Appraisal of Individual Needs–Initial that were mapped onto the 6 dimensions of the American Society of Addiction Medicine Criteria. In addition, participants rated 10 treatment outcomes from the Substance Abuse and Mental Health Services Administration's National Outcome Measures. We assessed consensus within stakeholder groups using the RAND/UCLA Appropriateness Method. We considered the items reaching consensus with the highest ratings across stakeholder groups as the most important individual needs and treatment outcomes. Results: We recruited 194 participants (81 providers, 54 policymakers, 32 researchers, 27 parents). Participants identified suicidality and severity of substance use disorder symptoms as the most important individual needs, and reduction in substance use as the most important treatment outcome. Conclusions: Standardized procedures for matching adolescents to levels of care for substance use treatment should at a minimum be based on assessments of suicidality and severity of substance use disorder symptoms, and consider reduction in substance use as a primary treatment outcome. These findings can progress the development of “level-of-care” decision rules specifically for adolescents.
  • Thumbnail Image
    Item
    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.