Publications by authors named "Ida Griesemer"

18 Publications

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Evaluating the clinical utility of early exome sequencing in diverse pediatric outpatient populations in the North Carolina Clinical Genomic Evaluation of Next-generation Exome Sequencing (NCGENES) 2 study: a randomized controlled trial.

Trials 2021 Jun 14;22(1):395. Epub 2021 Jun 14.

Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Campus Box #7295, Chapel Hill, NC, 27599-7295, USA.

Background: Exome sequencing (ES) has probable utility for shortening the diagnostic odyssey of children with suspected genetic disorders. This report describes the design and methods of a study evaluating the potential of ES as a routine clinical tool for pediatric patients who have suspected genetic conditions and who are in the early stages of the diagnostic odyssey.

Methods: The North Carolina Clinical Genomic Evaluation by Next-generation Exome Sequencing (NCGENES) 2 study is an interdisciplinary, multi-site Phase III randomized controlled trial of two interventions: educational pre-visit preparation (PVP) and offer of first-line ES. In this full-factorial design, parent-child dyads are randomly assigned to one of four study arms (PVP + usual care, ES + usual care, PVP + ES + usual care, or usual care alone) in equal proportions. Participants are recruited from Pediatric Genetics or Neurology outpatient clinics in three North Carolina healthcare facilities. Eligible pediatric participants are < 16 years old and have a first visit to a participating clinic, a suspected genetic condition, and an eligible parent/guardian to attend the clinic visit and complete study measures. The study oversamples participants from underserved and under-represented populations. Participants assigned to the PVP arms receive an educational booklet and question prompt list before clinical interactions. Randomization to offer of first-line ES is revealed after a child's clinic visit. Parents complete measures at baseline, pre-clinic, post-clinic, and two follow-up timepoints. Study clinicians provide phenotypic data and complete measures after the clinic visit and after returning results. Reportable study-related research ES results are confirmed in a CLIA-certified clinical laboratory. Results are disclosed to the parent by the clinical team. A community consultation team contributed to the development of study materials and study implementation methods and remains engaged in the project.

Discussion: NCGENES 2 will contribute valuable knowledge concerning technical, clinical, psychosocial, and health economic issues associated with using early diagnostic ES to shorten the diagnostic odyssey of pediatric patients with likely genetic conditions. Results will inform efforts to engage diverse populations in genomic medicine research and generate evidence that can inform policy, practice, and future research related to the utility of first-line diagnostic ES in health care.

Trial Registration: ClinicalTrials.gov NCT03548779 . Registered on June 07, 2018.
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http://dx.doi.org/10.1186/s13063-021-05341-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8201439PMC
June 2021

Burden or benefit? Effects of providing education about and the option to request additional genomic findings from diagnostic exome sequencing: A randomized controlled trial.

Patient Educ Couns 2021 Apr 29. Epub 2021 Apr 29.

Department of Social Medicine, University of North Carolina, Chapel Hill, NC 27599, USA.

Objective: Many people prefer to learn secondary or "additional" findings from genomic sequencing, including findings with limited medical actionability. Research has investigated preferences for and effects of learning such findings, but not psychosocial and behavioral effects of receiving education about them and the option to request them, which could be burdensome or beneficial (e.g., causing choice overload or satisfying strong preferences, respectively).

Methods: 335 adults with suspected genetic disorders who had diagnostic exome sequencing in a research study and were randomized to receive either diagnostic findings only (DF; n = 171) or diagnostic findings plus education about additional genomic findings and the option to request them (DF + EAF; n = 164). Assessments occurred after enrollment (Time 1), after return of diagnostic results and-for DF + EAF-the education under investigation (Time 2), and three and six months later (Times 3, 4).

Results: Time 2 test-related distress, test-related uncertainty, and generalized anxiety were lower in the DF + EAF group (ps = 0.025-0.043). There were no other differences.

Conclusions: Findings show limited benefits and no harms of providing education about and the option to learn additional findings with limited medical actionability.

Practice Implications: Findings can inform recommendations for returning additional findings from genomic sequencing (e.g., to research participants or after commercial testing).
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http://dx.doi.org/10.1016/j.pec.2021.04.026DOI Listing
April 2021

Discrimination Experiences and Depressive Symptoms among African Americans with Osteoarthritis Enrolled in a Pain Coping Skills Training Randomized Controlled Trial.

J Health Care Poor Underserved 2021 ;32(1):145-155

African Americans are more likely than members of other racial groups to report perceived discrimination in health care settings, and discrimination is linked to depression. Using data from a randomized controlled trial of pain coping skills training (PCST) for African Americans with osteoarthritis (N=164), we evaluated the interaction between discrimination experiences and experimental condition (PCST or control group) in linear regression models predicting depressive symptoms. There was a significant interaction between personal discrimination and experimental condition on depressive symptoms (interaction term coefficient: b=-3.2, 95% CI [- 6.4, - .02], p=.05). Discrimination was associated with depressive symptoms among those in the control group but not among those who received PCST. Participation in a PCST intervention may have reduced the association between discrimination experiences and depressive symptoms among participants in this sample. Future research should explore whether interventions aimed at teaching coping skills may be effective in ameliorating the harmful mental health effects of perceived discrimination.
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http://dx.doi.org/10.1353/hpu.2021.0014DOI Listing
January 2021

Engaging community stakeholders in research on best practices for clinical genomic sequencing.

Per Med 2020 11 7;17(6):435-444. Epub 2020 Oct 7.

Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA.

Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study. A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed. Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population. This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants.
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http://dx.doi.org/10.2217/pme-2020-0074DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938705PMC
November 2020

Acceptability of telephone-based pain coping skills training among African Americans with osteoarthritis enrolled in a randomized controlled trial: a mixed methods analysis.

BMC Musculoskelet Disord 2020 Aug 14;21(1):545. Epub 2020 Aug 14.

Department of Medicine, University of North Carolina, Chapel Hill, NC, USA.

Background: Osteoarthritis (OA) disproportionately impacts African Americans compared to Caucasians, including greater pain severity. The Pain Coping Skills Training for African Americans with Osteoarthritis (STAART) study examined a culturally enhanced Pain Coping Skills Training (CST) program among African Americans with OA. This mixed methods study evaluated the acceptability of the Pain CST program among STAART participants.

Methods: STAART was a randomized controlled trial evaluating the effectiveness of an 11-session, telephone-based pain CST program, compared to a usual care control group. Participants were from the University of North Carolina and Durham Veterans Affairs Healthcare Systems. The present analyses included 93 participants in the CST group who completed a questionnaire about experiences with the program. Descriptive statistics of the questionnaire responses were calculated using SAS software. Thematic analysis was applied to open-response data using Dedoose software.

Results: Participants' mean rating of overall helpfulness of the pain CST program for managing arthritis symptoms was 8.0 (SD = 2.2) on a scale of 0-10. A majority of participants reported the program made a positive difference in their experience with arthritis (83.1%). Mean ratings of helpfulness of the specific skills ranged from 7.7 to 8.8 (all scales 0-10). Qualitative analysis of the open-response data identified four prominent themes: Improved Pain Coping, Mood and Emotional Benefits, Improved Physical Functioning, and experiences related to Intervention Delivery.

Conclusions: The high ratings of helpfulness demonstrate acceptability of this culturally enhanced pain CST program by African Americans with OA. Increasing access to cognitive-behavioral therapy-based programs may be a promising strategy to address racial disparities in OA-related pain and associated outcomes.

Trial Registration: NCT02560922 , registered September 25, 2015.
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http://dx.doi.org/10.1186/s12891-020-03578-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7427940PMC
August 2020

Developing a Primary Care-Focused Intervention to Engage Patients With Osteoarthritis in Physical Activity: A Stakeholder Engagement Qualitative Study.

Health Promot Pract 2020 Aug 12:1524839920947690. Epub 2020 Aug 12.

Durham VA Healthcare System, Durham, NC, USA.

Physical activity (PA) is important for managing osteoarthritis (OA), but many patients are inactive. Research is needed on strategies to leverage clinical encounters to engage patients in PA. Guided by the socioecological model of health behavior, this study aimed to engage stakeholders in the process of refining an Osteoarthritis Physical Activity Care Pathway (OA-PCP). Six focus groups and seven individual interviews were conducted with key stakeholders. Focus groups were specific to stakeholder roles and included patients with OA, support partners, and clinic personnel ( = 6 focus groups). Interview participants were local and national PA program representatives ( = 7 interviews). Data were analyzed by thematic analysis. Themes identified in the data included ways the OA-PCP can help patients with OA address challenges to PA engagement, strategies for connecting patients with PA resources, methods for implementing OA-PCP into clinical settings and potential use of PA trackers in the OA-PCP program. Stakeholders' comments were summarized into key recommendations for OA-PCP. Some recommendations reinforced and led to refinements in planned aspects of OA-PCP, including tailoring to individual patients, involvement of a support partner, and addressing pain with PA. Other recommendations resulted in larger changes for OA-PCP, including the addition of three email- or mail-based contacts and not requiring use of a PA tracker. The refined OA-PCP program is being evaluated in an exploratory trial, with the ultimate goal of establishing a PA program for OA that can be successfully implemented in clinical settings.
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http://dx.doi.org/10.1177/1524839920947690DOI Listing
August 2020

Racial Differences in the Influence of Health Care System Factors on Informal Support for Cancer Care Among Black and White Breast and Lung Cancer Survivors.

Fam Community Health 2020 Jul/Sep;43(3):200-212

Greensboro Health Disparities Collaborative, North Carolina (Drs Ellis, Black, Baker, Davis, Doost, Lightfoot, Samuel, Schaal, and Eng and Mss Cothern, Goestch, Griesemer, Guerrab, Padilla, and Yongue); School of Social Work, University of Michigan, Ann Arbor (Dr Ellis); College of Health and Human Performance, East Carolina University, Greenville (Dr Black); Public Health Studies Program, Elon University, North Carolina (Dr Baker); School of Medicine, Washington University, St Louis, Missouri (Dr Davis); Departments of Health Behavior (Mss Griesemer and Guerrab and Drs Lightfoot and Eng) and Health Policy and Management (Ms Padilla and Dr Samuel), University of North Carolina, Chapel Hill; Center for Health Promotion and Disease Prevention, University of North Carolina (Dr Lightfoot); The Partnership Project, Inc, Greensboro, North Carolina (Dr Schaal); and Department of Public Health Education, University of North Carolina at Greensboro (Ms Yongue).

This retrospective, secondary qualitative analysis investigates whether health system factors influence social support among Black and white breast and lung cancer survivors and racial differences in support. These data come from race- and cancer-stratified focus groups (n = 6) and interviews (n = 2) to inform a randomized controlled trial utilizing antiracism and community-based participatory research approaches. Findings indicate social support was helpful for overcoming treatment-related challenges, including symptom management and patient-provider communication; racial differences in support needs and provision were noted. Resources within individual support networks reflect broader sociostructural factors. Reliance on family/friends to fill gaps in cancer care may exacerbate racial disparities.
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http://dx.doi.org/10.1097/FCH.0000000000000264DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7265975PMC
November 2020

Osteoarthritis physical activity care pathway (OA-PCP): results of a feasibility trial.

BMC Musculoskelet Disord 2020 May 16;21(1):308. Epub 2020 May 16.

Department of Exercise and Sport Science and Thurston Arthritis Research Center, University of North Carolina, 3330 Thurston Bldg, CB #7280, Chapel Hill, NC, #7280, USA.

Background: To obtain information on feasibility and acceptability, as well as preliminary data on efficacy, of an Osteoarthritis Physical activity Care Pathway (OA-PCP).

Methods: This was a single group pilot study involving 60 participants with symptomatic, physician diagnosed knee or hip OA, recruited from primary care clinics. Participants self-reported completing less than 150 min per week of moderate-to-vigorous physical activity (MVPA) at baseline. The 3-month OA-PCP intervention involved 3 physical activity (PA) coaching calls (focused on goal setting), three check-in emails and linkage with community-based or online resources to support PA. Efficacy outcomes were collected at baseline and 4-month follow-up. The primary efficacy outcome was minutes of MVPA, assessed via accelerometer. Secondary outcomes included minutes of light intensity activity, sedentary minutes, step counts, and Western Ontario and McMaster Universities (WOMAC) pain and function subscales. Participants were also asked to rate the helpfulness of the OA-PCP intervention on a scale of 0-10. Differences in efficacy outcomes between baseline and 4-month follow-up were assessed using paired t-tests.

Results: Among participants beginning the study, 88% completed follow-up assessments and ≥ 90% completed each of the intervention calls. Average daily minutes of MVPA was 8.0 at baseline (standard deviation (SD) = 9.9) and 8.9 at follow-up (SD = 12.1, p = 0.515). There were no statistically significant changes in light intensity activity, sedentary time or step counts. The mean WOMAC pain score improved from 8.1 (SD = 3.6) at baseline to 6.2 (SD = 3.8) at follow-up (p < 0.001); the mean WOMAC function score improved from 26.2 (SD = 13.2) to 20.2 (SD = 12.5; p < 0.001). The mean rating of helpfulness was 7.6 (SD = 2.5).

Conclusions: Results supported the feasibility and acceptability of the study, and participants reported clinically relevant improvements in pain and function. PA metrics did not improve substantially. Based on these results and participant feedback, modifications including enhanced self-monitoring are being made to increase the impact of the OA-PCP intervention on PA behavior.

Trial Registration: NCT03780400, December 19, 2018.
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http://dx.doi.org/10.1186/s12891-020-03339-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7229580PMC
May 2020

Correction: Genomic knowledge in the context of diagnostic exome sequencing: changes over time, persistent subgroup differences, and associations with psychological sequencing outcomes.

Genet Med 2019 12;21(12):2846

Center for Genomics and Society, University of North Carolina, Chapel Hill, NC, USA.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.
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http://dx.doi.org/10.1038/s41436-019-0622-yDOI Listing
December 2019

Genomic knowledge in the context of diagnostic exome sequencing: changes over time, persistent subgroup differences, and associations with psychological sequencing outcomes.

Genet Med 2020 01 17;22(1):60-68. Epub 2019 Jul 17.

Center for Genomics and Society, University of North Carolina, Chapel Hill, NC, USA.

Purpose: People undergoing diagnostic genome-scale sequencing are expected to have better psychological outcomes when they can incorporate and act on accurate, relevant knowledge that supports informed decision making.

Methods: This longitudinal study used data from the North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing Study (NCGENES) of diagnostic exome sequencing to evaluate associations between factual genomic knowledge (measured with the University of North Carolina Genomic Knowledge Scale at three assessments from baseline to after return of results) and sequencing outcomes that reflected participants' perceived understanding of the study and sequencing, regret for joining the study, and responses to learning sequencing results. It also investigated differences in genomic knowledge associated with subgroups differing in race/ethnicity, income, education, health literacy, English proficiency, and prior genetic testing.

Results: Multivariate models revealed higher genomic knowledge at baseline for non-Hispanic Whites and those with higher income, education, and health literacy (p values < 0.001). These subgroup differences persisted across study assessments despite a general increase in knowledge among all groups. Greater baseline genomic knowledge was associated with lower test-related distress (p = 0.047) and greater perceived understanding of diagnostic genomic sequencing (p values 0.04 to <0.001).

Conclusion: Findings extend understanding of the role of genomic knowledge in psychological outcomes of diagnostic exome sequencing, providing guidance for additional research and interventions.
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http://dx.doi.org/10.1038/s41436-019-0600-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6946868PMC
January 2020

Developing a couple typology: A qualitative study of couple dynamics around physical activity.

Transl Behav Med 2020 08;10(3):751-759

John Theurer Cancer Center, Hackensack University Medical Center, Hackensack, NJ, USA.

Partner-based social support can motivate engagement in physical activity (PA); however, couples approach exchanging support in different ways. This study aimed to elucidate the role of relationship dynamics in couple-based support for PA, with the goal of informing intervention strategies that will effectively leverage couple characteristics to increase support for PA. We conducted a qualitative study of couples who completed a longitudinal study of social support for PA. Participants were people with osteoarthritis who were not meeting PA recommendations and their cohabitating partners (n = 19 couples). We conducted in-depth, semistructured interviews and analyzed transcripts using narrative analysis. Participants were 76% non-Hispanic White and, on average, 62 years old. Themes in the data included (a) attitudes about working together to be more active (ranging from positive to negative) and (b) couples' narrative concordance (high to low shared reality). We developed a couple typology with four categories: "Working together works" (positive attitudes/high shared reality; n = 4 couples), "Doing our own thing" (range of attitudes with practical/preferential barriers to working together/high shared reality; n = 5 couples), "Conscious conflict" (discrepant attitudes/high shared reality; n = 5 couples), and "Different realities" (discrepant attitudes/low shared reality; n = 5 couples). We describe examples of each type. In a sample of 19 couples, there were observable differences in participants' attitudes about working together to be more active and in couples' shared reality around those attitudes. Future research should investigate implications for the efficacy of interventions and, if warranted, develop methods to identify couple types and offer appropriate intervention strategies.
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http://dx.doi.org/10.1093/tbm/ibz052DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7413183PMC
August 2020

Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies.

Genet Med 2019 12 13;21(12):2781-2790. Epub 2019 Jun 13.

Department of Population Science, City of Hope, Duarte, CA, USA.

Purpose: As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants' psychological outcomes across multiple clinical settings.

Methods: We conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale).

Results: Anxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants' anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses.

Conclusion: Our findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation.
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http://dx.doi.org/10.1038/s41436-019-0565-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7260995PMC
December 2019

Psychological adaptation to diagnostic genomic sequencing results: The role of hope fulfillment.

Health Psychol 2019 Jun 8;38(6):527-535. Epub 2019 Apr 8.

UNC Gillings School of Global Public Health, University of North Carolina at Chapel Hill.

Objective: Psychological adaptation is an important but understudied outcome among patients who undergo DNA evaluation to identify a cause of an unexplained health condition. This longitudinal study examines the relationship between the degree to which participants' hopes for diagnostic genomic sequencing were fulfilled and their psychological adaptation to their sequencing results over time.

Method: Secondary analyses were conducted on data from a subset of adult participants from the North Carolina Clinical Genomic Evaluation by Next-Generation Exome Sequencing study with physical health conditions of suspected genetic etiology (such as neurological disorders or cancer; n = 192). Hope fulfillment and type of hope (hopes related to personal-family health implications vs. hoping to help others-advance science) were assessed as predictors of change in psychological adaptation (Psychological Adaptation Scale) and 4 subscales (coping efficacy, self-esteem, social integration, spiritual-existential well-being), from 2 weeks to 6 months after disclosure of genomic sequencing results.

Results: Controlling for covariates, degree of hope fulfillment was associated with increased general psychological adaptation (β = .14, p = .02), social integration (β = .17, p = .01), and spiritual-existential well-being (β = .15, p = .02). Type of hope did not modify effects of degree of hope fulfillment on adaptation outcomes.

Conclusions: The degree to which patients' genomic sequencing-related hopes are fulfilled may be an important driver of long-term psychological adaptation after genomic sequencing. Evaluating the degree to which patients' hopes are fulfilled may allow clinicians to gain insight into the likely trajectory for patient adaptation after learning their results from genomic sequencing. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
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http://dx.doi.org/10.1037/hea0000733DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522310PMC
June 2019

Factors influencing NCGENES research participants' requests for non-medically actionable secondary findings.

Genet Med 2019 05 21;21(5):1092-1099. Epub 2018 Sep 21.

John Theuer Cancer Center, Hackensack University Medical Center, Hackensack, NJ, USA.

Purpose: Genomic sequencing can reveal variants with limited to no medical actionability. Previous research has assessed individuals' intentions to learn this information, but few report the decisions they made and why.

Methods: The North Carolina Clinical Genomic Evaluation by Next Generation Exome Sequencing (NCGENES) project evaluated adult patients randomized to learn up to six types of non-medically actionable secondary findings (NMASF). We previously found that most participants intended to request NMASF and intentions were strongly predicted by anticipated regret. Here we examine discrepancies between intentions and decisions to request NMASF, hypothesizing that anticipated regret would predict requests but that this association would be mediated by participants' intentions.

Results: Of the 76% who expressed intentions to learn results, only 42% made one or more requests. Overall, only 32% of the 155 eligible participants requested NMASF. Analyses support a plausible causal link between anticipated regret, intentions, and requests.

Conclusions: The discordance between participants' expressed intentions and their actions provides insight into factors that influence patients' preferences for genomic information that has little to no actionability. These findings have implications for the timing and methods of eliciting preferences for NMASF and suggest that decisions to learn this information have cognitive and emotional components.
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http://dx.doi.org/10.1038/s41436-018-0294-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522134PMC
May 2019

The who, what, and why of research participants' intentions to request a broad range of secondary findings in a diagnostic genomic sequencing study.

Genet Med 2018 07 26;20(7):760-769. Epub 2017 Oct 26.

Center for Genomics and Society, University of North Carolina, Chapel Hill, North Carolina, USA.

Purpose: In a diagnostic exome sequencing study (the North Carolina Clinical Genomic Evaluation by Next-Generation Exome Sequencing project, NCGENES), we investigated adult patients' intentions to request six categories of secondary findings (SFs) with low or no medical actionability and correlates of their intentions.

Methods: At enrollment, eligible participants (n = 152) completed measures assessing their sociodemographic, clinical, and literacy-related characteristics. Prior to and during an in-person diagnostic result disclosure visit, they received education about categories of SFs they could request. Immediately after receiving education at the visit, participants completed measures of intention to learn SFs, interest in each category, and anticipated regret for learning and not learning each category.

Results: Seventy-eight percent of participants intended to learn at least some SFs. Logistic regressions examined their intention to learn any or all of these findings (versus none) and interest in each of the six individual categories (yes/no). Results revealed little association between intentions and sociodemographic, clinical, or literacy-related factors. Across outcomes, participants who anticipated regret for learning SFs reported weaker intention to learn them (odds ratios (ORs) from 0.47 to 0.71), and participants who anticipated regret for not learning these findings reported stronger intention to learn them (OR 1.61-2.22).

Conclusion: Intentions to request SFs with low or no medical actionability may be strongly influenced by participants' desire to avoid regret.
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http://dx.doi.org/10.1038/gim.2017.176DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5920790PMC
July 2018

First-Person Perspectives on Prescriber-Service User Relationships in Community Mental Health Centers.

Psychiatr Serv 2017 Sep 1;68(9):947-951. Epub 2017 Jun 1.

Ms. Johnson-Kwochka is with the IPS Employment Center, Westat, Lebanon, New Hampshire. Dr. Carpenter-Song is with the Department of Anthropology, Dartmouth College, Hanover, New Hampshire. Ms. Griesemer is with the Department of Health Behavior, University of North Carolina at Chapel Hill. Ms. Nikolajski is with the University of Pittsburgh Medical Center (UPMC), Center for High-Value Health Care, Pittsburgh. Ms. Parotta and Dr. MacDonald-Wilson are with Community Care Behavioral Health, UPMC Insurance Services Division, Pittsburgh.

Objective: Because of changes in health care, there is a greater focus on brief medication management visits as the primary method of providing psychiatric care in community mental health settings. Research on the first-person perspectives of service users and prescribers in these settings is limited. The objective of this study was to describe first-person perspectives on medication management visits and the service user-prescriber relationship.

Methods: Researchers conducted qualitative interviews as part of a larger comparative effectiveness trial at 15 community mental health centers, researchers interviewed service users (N=44) and prescribers (N=25) about their perspectives on the typical elements of a medication management visit and asked service users about their relationship with their prescriber.

Results: Both service users and prescribers described medication management visits as very brief encounters focused on medication and symptoms. Most service users reflected on the service user-prescriber relationship in positive or neutral terms; they did not describe the development of a strong therapeutic relationship or a meaningful clinical encounter with prescribing clinicians.

Conclusions: Service users described the service user-prescriber relationship and medication management visit as largely transactional. Despite the transactional nature of these encounters, most service users described relationships with prescribing clinicians in positive or neutral terms. Their satisfaction with the visit did not necessarily mean that they were receiving high-quality care. Satisfaction may instead suggest service users' disengagement from care. They may need more support to fully participate in their own care.
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http://dx.doi.org/10.1176/appi.ps.201600325DOI Listing
September 2017

Beyond "Med Management".

Psychiatr Serv 2017 Jun 1;68(6):618-620. Epub 2017 Mar 1.

Dr. Torrey is with the Department of Psychiatry, Geisel School of Medicine at Dartmouth, Lebanon, New Hampshire (e-mail: ). Ms. Griesemer is with the Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill. Dr. Carpenter-Song is with the Department of Anthropology, Dartmouth College, Hanover, New Hampshire.

Today, outpatient psychiatric care is commonly referred to as "medication management" and is often delivered in 15- to 20-minute visits by psychiatric care providers who receive little workflow support from technology or medical assistants. This Open Forum argues that this current state of psychiatric care delivery is a problem, comments on how psychiatry got here, and suggests that, through reframing and redesign, psychiatric professionals can improve care for those delivering and for those receiving this needed service.
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http://dx.doi.org/10.1176/appi.ps.201600133DOI Listing
June 2017

A digital advocate? Reactions of rural people who experience homelessness to the idea of recording clinical encounters.

Health Expect 2017 08 7;20(4):618-625. Epub 2016 Sep 7.

The Preference Laboratory, The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, NH, USA.

Background: Are the benefits of recording clinical encounters shared across different groups, or do they vary based on social position? Studies show that educated patients record their clinical visits to enhance their experience, but very little is known about recording benefits among "hard-to-reach" populations.

Objective: To examine the reactions of homeless people to the idea of using a smartphone to record their own clinical encounter, either covertly or with permission from their physician.

Method: We conducted semi-structured interviews with individuals at a temporary housing shelter in Northern New England. A thematic analysis identified themes that were iteratively refined into representative groups.

Results: Eighteen (18) interviews were conducted, 12 with women and six with men. Initial reactions to clinical recordings were positive (11 of 18). A majority (17 of 18) were willing to use recordings in future visits. A thematic analysis characterized data in two ways: (i) by providing reliable evidence for review, they functioned as an advocacy measure for patients; (ii) by promoting transparency and levelling social distance, this technology modified clinical relationships.

Discussion: Recordings permitted the sharing of data with others, providing tangible proof of behaviour and refuting misconceptions. Asking permission to record appeared to modify relationships and level perceived social distance with clinicians.

Conclusions: We found that while many rural, disadvantaged individuals felt marginalized by the wide social distance between themselves and their clinicians, recording technology may serve as an advocate by holding both patients and doctors accountable and by permitting the burden of clinical proof to be shared.
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http://dx.doi.org/10.1111/hex.12492DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5513013PMC
August 2017