IU Indianapolis ScholarWorks :: Browsing by Author "Halverson, Colin M. E."

Browsing by Author "Halverson, Colin M. E."

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An evaluation of practices and policies used in genetics clinics across the United States to manage referrals for Ehlers-Danlos and hypermobility syndromes
(Elsevier, 2025-01-07) Boucher, Lauren; Nestler, Berkley; Groepper, Daniel; Quillin, John; Deyle, David; Halverson, Colin M. E.; Medicine, School of Medicine
Purpose: Hypermobile Ehlers-Danlos syndrome (hEDS) and joint hypermobility syndrome (JHS), among other conditions, comprise a collection of heritable disorders of connective tissue. There are recognized challenges in diagnosing JHS/hEDS. Despite a lack of identifiable molecular etiology for these conditions, referrals to medical geneticists for evaluation are commonplace, and they continue to rise. Because of an absence of nationally recognized referral guidelines for JHS/hEDS, health care institutions are left to develop their own policies. The purpose of our study was to characterize these ad hoc policies systematically and at a nationwide level. Methods: We conducted a mixed-methods study of 71 board-eligible or board-certified genetic counselors, including 15 qualitative interviews. Results: Cross-case analysis revealed multiple motivations for creating these policies, methods to more effectively manage referrals for hypermobility and concern for EDS, and participants' evaluations of the successes and shortcomings of these policies at their institutions. We found diverse and unstandardized policies that were meant to address numerous perceived challenges. This lack of standardization is a concern because it may result in inconsistent access to care for patients with JHS/hEDS and create barriers to diagnosis and treatment. Conclusion: Our findings demonstrate that policies vary widely, and genetic counselors are concerned about the potential impact of this variability on the quality of care for patients with JHS/hEDS.
Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes
(Elsevier, 2023) Halverson, Colin M. E.; Penwell, Heather L.; Francomano, Clair A.; Medicine, School of Medicine
Patients with hypermobile Ehlers Danlos Syndrome often experience psychological distress resulting from the perceived hostility and disinterest of their clinicians. We conducted 26 in-depth interviews with patients to understand the origins of this trauma and how it could be addressed in practice. We found that the cumulative effects of numerous negative encounters lead patients to lose trust in their healthcare providers and the healthcare system, and to develop acute anxiety about returning to clinic to seek further care. We describe this as clinician-associated traumatization. Ultimately, our interviewees described the result of this traumatization as worse – but preventable – health outcomes.
Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome
(Elsevier, 2023) Halverson, Colin M. E.; Cao, Sha; Perkins, Susan M.; Francomano, Clair A.; Anthropology, School of Liberal Arts
Purpose The extent of comorbidity and misdiagnosis had been unclear for patients with hypermobile Ehlers-Danlos Syndrome (hEDS), a hereditary connective tissue disorder. The objectives of the study were to (1) describe the prevalence of alternative diagnoses that these patients have received, (2) assess their endorsement and rejection of these diagnoses, and (3) characterize their experience on their “diagnostic odysseys.” Methods We circulated a survey through the Ehlers-Danlos Society’s Global Registry, asking participants which diagnoses they had received and whether they believed they were still accurate. They were also asked questions about their experience while seeking a diagnosis. Descriptive statistics and consensus clustering were then conducted. Results A total of 505 unique individuals with clinically confirmed hEDS completed the survey. The average number of alternative diagnoses was 10.45. Anxiety, depression, and migraines were the most common. However, the diagnoses with the greatest endorsement were postural orthostatic tachycardia syndrome, cervical instability, and mast cell activation syndrome. The diagnoses with the greatest rejection were functional neurologic disorders, multiple sclerosis, and fibromyalgia. The average time to diagnosis was 10.39 years. Conclusion An appropriate hEDS diagnosis is complex and its presentation multisystemic. Health care providers should be aware of the specific phenotypes to improve the time to diagnosis and care.
Content Analysis of Emoji and Emoticon Use in Clinical Texting Systems
(American Medical Association, 2023-06-01) Halverson, Colin M. E.; Donnelly, Claire E.; Weiner, Michael; Lee, Joy L.; Medicine, School of Medicine
Importance: Emoji and emoticons are quickly becoming an omnipresent feature of virtual communication. As health care systems increasingly adopt clinical texting applications, it is critical to understand how clinicians use these ideograms with colleagues and how it may affect their interactions. Objective: To evaluate the functions that emoji and emoticons serve in clinical text messages. Design, setting, and participants: This qualitative study's content analysis of clinical text messages from a secure clinical messaging platform was conducted to assess the communicative function of emoji and emoticons. The analysis included messages sent by hospitalists to other health care clinicians. A subset of a random 1% sample of all message threads, which included at least 1 emoji or emoticon, on a clinical texting system used by a large, Midwestern US hospital from July 2020 until March 2021 were analyzed. A total of 80 hospitalists participated in the candidate threads. Main outcomes: Whether and what kind of emoji or emoticon was deployed in each reviewed thread was tabulated by the study team. The communicative function of each emoji and emoticon was assessed according to a prespecified coding scheme. Results: A total of 80 hospitalists (49 [61%] male; 30 [37%] Asian, 5 [6%] Black or African American, 2 [3%] Hispanic or Latinx, 42 [53%] White; of 41 with age data, 13 [32%] aged 25-34 years, 19 [46%] aged 35-44 years) participated in the 1319 candidate threads. Within the sample of 1319 threads, 7% of threads (155 unique messages) contained at least 1 emoji or emoticon. The majority (94 [61%]) functioned emotively, that is, conveyed the internal state of the sender, and 49 (32%) served to open, maintain, or close communication. No evidence was identified that they caused confusion or were seen as inappropriate. Conclusions and relevance: This qualitative study found that when clinicians use emoji and emoticons in secure clinical texting systems, these symbols function primarily to convey new and interactionally salient information. These results suggest that concerns about the professionalism of emoji and emoticon use may be unwarranted.
Diagnostic deserts: Community-level barriers to appropriate genetics services
(Wiley, 2023-01) Doyle, Tom A.; Conboy, Erin; Halverson, Colin M. E.; Medicine, School of Medicine
Ethical conflicts in translational genetic research: lessons learned from the eMERGE-III experience
(Nature Publishing Group, 2020-06-18) Halverson, Colin M. E.; Bland, Sarah T.; Leppig, Kathleen A.; Marasa, Maddalena; Myers, Melanie; Rasouly, Hila Milo; Wynn, Julia; Clayton, Ellen Wright; Medicine, School of Medicine
Purpose The Electronic Medical Records and Genomics (eMERGE) Consortium integrated biorepository-based research with electronic health records (EHR) to return results from large-scale genetic tests to participants and uploaded those data into the EHR. This article explores the ethical issues investigators encountered in that process. Methods We conducted in-depth, semistructured interviews with study personnel of the eMERGE-III Consortium sites that returned results. Results We discuss major ethical issues that arose while attempting to return research results from the eMERGE Consortium to individual participants. These included difficulties recontacting those participants who had not explicitly consented to such and disclosing results to many participants with insufficient infrastructure and staff. Investigators reported being driven by a supererogatory clinical impulse. Conclusion All these issues ultimately derive from ethical conflicts inherent to translational work being done at the interface of research and clinical care. A critical rethinking of this divide is important, but infrastructural support for such work is necessary for an ethically sound rollout of large-scale genetic testing.
Evolving Attitudes Toward Numeric Pain Assessment Among Patients with Hypermobile Ehlers-Danlos Syndrome: A Qualitative Interview Study
(Oxford University Press, 2023) Halverson, Colin M. E.; Kroenke, Kurt; Penwell, Heather L.; Francomano, Clair A.; Medicine, School of Medicine
Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases
(JMIR, 2024-12-30) Doyle, Tom A.; Vershaw, Samantha L.; Conboy, Erin; Halverson, Colin M. E.; Medical and Molecular Genetics, School of Medicine
Background: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs. Objective: This study aimed to identify what specific features of disease-related support groups (DRSGs) the RD community finds particularly useful or supportive and provide a set of recommendations to improve social media-based RD support groups based on this information. Methods: Semistructured qualitative interviews were performed with patients and parents of patients with RDs. Interview participants had to be at least 18 years of age at the time of the interview, be seen by a genetics specialist at a partner health care institution and be proficient in the English language. Social media use was not a prerequisite for participation, so interview participants ranged from extensive users of social media to those who chose to remain off all social media. All interviews were conducted by phone, recorded, and then transcribed. Interview transcripts were then coded using the 6 steps outlined by Braun and Clarke. Three researchers (TAD, SLV, and CMEH) performed initial coding. After this, the study team conducted a review of themes and all members of the team agreed upon a final analysis and presentation of data. Results: We conducted 31 interviews (mean age 40, SD 10.04 years; n=27, 87% were women; n=30, 97% were non-Hispanic White). Thematic analysis revealed that social media DRSG users identified the informational usefulness of these groups as being related to the gathering and sharing of specific information about an RD, clarification about the importance and meaning of certain symptoms, and obtaining insight into an RD's progression and prognosis. Participants also identified that DRSGs were useful sources of practical information, such as tips and tricks about managing RD-related issues and concerns. In addition, participants found DRSGs to be a useful space for sharing their disease-related stories but also highlighted a feeling of exhaustion from overexposure and overuse of DRSGs. Conclusions: This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD-related information unhelpfully dispersed amongst a multitude of support groups.
Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region
(Springer Nature, 2024-03-14) Wagner, Wendy; Doyle, Tom A.; Francomano, Clair A.; Knight, Dacre R. T.; Halverson, Colin M. E.; Medical and Molecular Genetics, School of Medicine
Background: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs. In order to explore and begin to address barriers to seeking appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. Results: Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, they would make extensive and regular use of such a facility. Conclusions: We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, Hypermobility Spectrum Disorder, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and contribute to the sustainability of medical facilities.
Patient perspectives on variant reclassification after cancer susceptibility testing
(Wiley, 2020-04-24) Halverson, Colin M. E.; Connors, Laurie M.; Wessinger, Bronson C.; Clayton, Ellen W.; Wiesner, Georgia L.; Medicine, School of Medicine
Background Little is known about the impact of reclassification on patients’ perception of medical uncertainty or trust in genetics‐based clinical care. Methods Semistructured telephone interviews were conducted with 20 patients who had received a reclassified genetic test result related to hereditary cancer. All participants had undergone genetic counseling and testing for cancer susceptibility at Vanderbilt‐Ingram Cancer Center Hereditary Cancer Clinic within the last six years. Results Most of the participants did not express distress related to the variant reclassification and only a minority expressed a decrease in trust in medical genetics. However, recall of the new interpretation was limited, even though all participants were recontacted by letter, phone, or clinic visit. Conclusion Reclassification of genetic tests is an important issue in modern healthcare because changes in interpretation have the potential to alter previously recommended management. Participants in this study did not express strong feelings of mistrust or doubt about their genetic evaluation. However, there was a low level of comprehension and information retention related to the updated report. Future research can build on this study to improve communication with patients about their reclassified results.

Browsing by Author "Halverson, Colin M. E."

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