Browsing by Author "Miller, Mandy"

Now showing 1 - 4 of 4
  • Thumbnail Image
    Item
    Delivering Genetic Test Results for Parkinson Disease: A Qualitative Approach to Provider Experiences in the PD GENEration Study
    (Wolters Kluwer, 2024) Miller, Mandy; Cook, Lola; Verbrugge, Jennifer; Hodges, Priscila D.; Head, Katharine J.; Nance, Martha A.; Medical and Molecular Genetics, School of Medicine
    Background and objectives: The PD GENEration (PD GENE) study (NCT04057794) is an interventional clinical trial offering genetic testing with result disclosure and genetic counseling to individuals with Parkinson disease (PD). In general, experiences of those providing PD genetic testing and counseling in a research or clinical setting have not been extensively evaluated. In this study, providers' experiences when providing research result disclosure and genetic counseling to people with PD were explored with the goal of improving PD genetics services. Methods: Qualitative semistructured interviews of all neurologists and genetic counselors who performed genetic test result disclosure and genetic counseling to at least 5 participants in the pilot portion of the PD GENE study were conducted. An inductive thematic analysis of the transcribed interviews identified core themes and subthemes for "lessons learned" and "challenges encountered." Results: Interviews were conducted with 14 providers (7 neurologists and 7 genetic counselors) who described multiple lessons learned while disclosing genetic test results, including the ability to adapt to participant background and needs and the value of a well-structured and supportive study that also provides training and educational materials for the provider. Of importance, responses suggested that the PD GENE study answered a real need, highlighting a strong interest in the community. Providers also voiced several shared challenges including the complexities of PD and PD genetics, unexpected confusion on provider roles within a research study, and complicated family histories/dynamics. Discussion: Providers in the pilot portion of the PD GENE study encountered enthusiasm and strong engagement from many of the participants, and they, too, voiced significant satisfaction about their roles and the mission of the study. They learned valuable lessons, and their comfort providing genetic test result disclosure and genetic counseling grew as the study progressed. Although there were challenges, they were deemed manageable. The results from this qualitative study can inform both the expanded PD GENE study and other providers offering genetic testing and counseling to their patients in a neurology setting. It will also allow for targeted PD provider education.
  • Thumbnail Image
    Item
    Factors Influencing Patient Disclosure of Parkinson's Disease Genetic Testing Results to Relatives
    (Wiley, 2024) Schulze, Jeanine; Dhaliwal, Jasmine Kaur; Miller, Mandy; Quinn, Emily; Wetherill, Leah; Cook, Lola; Medical and Molecular Genetics, School of Medicine
    Background: Persons with Parkinson's disease (PD) who have received genetic test results are faced with the decision of whether, and how, to share that information with family. Studies in other specialties have shown high rates of disclosure motivated by a sense of responsibility. Rates of, and attitudes surrounding, disclosure have yet to be reported in this population. Objectives: To explore the disclosure practices and motivations of patients with PD regarding genetic test results, allowing insight to guide genetic counseling and navigation of test result discussions. Methods: A cross-sectional online survey was distributed to adults with PD and previous genetic test results. Survey questions assessed demographics, genetic testing results and delivery, sharing behaviors, perceptions of PD, and motivations and barriers to family disclosure. Results: Among respondents, 88.9% shared results with at least one family member, most often a child (73.5%) or sibling (65.4%). Seventy-four percent reported sharing results with someone outside of their family, most frequently a friend (88.4%). The most common motivation for disclosure was the perception that family members would want to know. Barriers to disclosure were lack of close relationships, understanding results, and perceived utility. Conclusions: Disclosure rates in this PD population were consistent with those in previously reported populations. Motivations were anchored in perceptions of utility and family desire for information, suggesting a need to adjust patient education to improve retention and to explore family dynamics and perceptions of results.
  • Thumbnail Image
    Item
    Patient perceptions of genetic counselors' role and emotional support needs in adults with Parkinson's disease
    (Wiley, 2025) Radecki, Myka; Halverson, Colin; Wetherill, Leah; Miller, Mandy; Medical and Molecular Genetics, School of Medicine
    One of the roles of a genetic counselor, when returning genetic test results for Parkinson's disease (PD), is to provide emotional support to the patient. However, whether or not these needs are being met in the genetic counseling setting is unknown. In this cross-sectional qualitative study, semi-structured interviews with 15 PD research participants were conducted to evaluate their emotional needs and expectations throughout the genetic counseling process. Interview questions assessed participants' background understanding of genetic counseling, informational and emotional expectations prior to the genetic counseling session, and experience with emotional support throughout the genetic counseling process. Through reflexive thematic analysis, we defined four major themes: (1) knowledge of genetic counselors' role in education but not in emotional support, (2) limited expectations for emotional support, (3) emotional support is not sought from genetic counselors, and (4) emotional support from genetic counselors was viewed ambivalently. One of the most important findings from this study was that regardless of whether participants had previously heard of genetic counseling, none of the participants knew that the provision of emotional support was an aspect of the genetic counselor's role. Although the majority of participants did not expect emotional support from their genetic counselor, over 60% of participants recognized that receiving emotional support is or could be important to them. Collectively, these findings highlight the necessity for enhanced patient education pertaining to the informational and emotional support that genetic counselors are trained to provide. We suggest that clarifying the role of emotional support with patients may increase comfort in disclosing their emotional needs with genetic counselors, improving patient-centered care overall.
  • Thumbnail Image
    Item
    The Promise and Pitfalls of Facebook Advertising: a Genetic Counselor’s Perspective
    (Springer, 2018-04) Verbrugge, Jennifer; Rumbaugh, Malia; Cook, Lola; Schulze, Jeanine; Miller, Mandy; Heathers, Laura; Arnedo, Vanessa; Kuhl, Maggie McGuire; Foroud, Tatiana; Medical and Molecular Genetics, School of Medicine
    Facebook advertising is a powerful tool for increasing the outreach and recruitment of research participants. We describe our experience as genetic counselors within the context of an internet-based research study, recruiting subjects for a Parkinson disease (PD) biomarker study.