Publications by authors named "Christine Rini"

106 Publications

Partner and Relationship Predictors of Longitudinal Physical Activity Trajectories Among Individuals with Osteoarthritis Using Latent Class Growth Analysis.

Ann Behav Med 2021 Jul 5. Epub 2021 Jul 5.

Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.

Background: Physical activity reduces osteoarthritis symptoms, yet many individuals with the disease are insufficiently active.

Purpose: We identified physical activity trajectories over 12 months of individuals with osteoarthritis and examined how their cohabiting spouses'/partners' baseline physical activity and relationship factors affected trajectory membership.

Methods: In this longitudinal observational study, we collected data from 168 adults with knee/hip osteoarthritis. We used latent class growth curve analysis to identify physical activity trajectories and logistic regression to predict trajectory membership using partners' physical activity, relationship satisfaction, and communal coping (belief that both partners are responsible for osteoarthritis management). Measures, including objectively assessed physical activity, were collected at baseline from the couple, who then received an educational class on physical activity and social support. Objectively assessed physical activity was also collected from individuals with osteoarthritis at 1 week, 3 months, 6 months, and 12 months post-baseline.

Results: Three trajectories were identified: stable active, increaser, and stable sedentary (24%, 40%, 37% of participants, respectively). Individuals with osteoarthritis with partners who were more active and who believed they alone were responsible for their osteoarthritis were more likely to follow the stable active (versus stable sedentary) trajectory. Those with partners who were less active and had higher relationship satisfaction were more likely to follow the increaser (vs. stable active) trajectory.

Conclusions: Findings demonstrate the importance of considering partner and relationship factors in physical activity interventions for couples.
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http://dx.doi.org/10.1093/abm/kaab054DOI Listing
July 2021

Pilot study of an internet-based pain coping skills training program for patients with systemic Lupus Erythematosus.

BMC Rheumatol 2021 Jun 17;5(1):20. Epub 2021 Jun 17.

Department of Medicine, Division of Rheumatology, Allergy and Immunology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

Background: Patients with Systemic Lupus Erythematosus (SLE) often experience pain and other symptoms that negatively impact quality of life. Interventions that enhance the use of behavioral and cognitive coping strategies may lead to improved outcomes among patients with SLE. Pain coping skills training (PCST) programs have been shown to improve outcomes among patients with other rheumatic conditions, but there have been no trials of PCST among patients with SLE. This study was a preliminary assessment of the feasibility and efficacy of painTRAINER, an automated, internet-based PCST program, among patients with SLE.

Methods: Participants (n = 60) with SLE from one health care system were randomly assigned with equal allocation to painTRAINER or a wait list control group. PainTRAINER involves 8 modules; participants were instructed to complete one module weekly, along with practice activities for each cognitive or behavioral coping skill. Outcome measures were assessed at baseline and 9-week follow-up, including the Pain Catastrophizing Scale, PROMIS Subscales (Pain Interference, Physical Function, Sleep Disturbance, Anxiety, Depression, Fatigue and Participation), and the LupusPRO questionnaire. Mean changes in outcomes from baseline to follow up and Cohen's d effect sizes were computed.

Results: Effect sizes for the painTRAINER group (relative to the wait list group) were small, with changes being greatest for the PROMIS Depression score (d = - 0.32). Among those randomized to the painTRAINER group, 50% accessed the program ("painTRAINER users"). Most of those who did not access the program stated that they did not receive instructions via email. Effect sizes for "painTRAINER users" (relative to wait list) were larger than for the whole painTRAINER group: Pain Catastrophizing d = - 0.60, PROMIS Pain Interference d = - 0.3., PROMIS Depression d = - 0.44, LupusPRO Health-Related Quality of Life d = 0.30.

Conclusions: PainTRAINER users reported meaningful improvements in multiple physical and psychological outcomes, supporting the potential of PCST programs to benefit individuals with SLE. However, strategies are needed to improve engagement with the program and tailor content to comprehensively address key SLE symptoms and challenges.

Trial Registration: NCT03933839 , May 1, 2019.
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http://dx.doi.org/10.1186/s41927-021-00191-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8210367PMC
June 2021

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

Lessons learned about harmonizing survey measures for the CSER consortium.

J Clin Transl Sci 2020 Apr 24;4(6):537-546. Epub 2020 Apr 24.

Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY, USA.

Introduction: Implementation of genome-scale sequencing in clinical care has significant challenges: the technology is highly dimensional with many kinds of potential results, results interpretation and delivery require expertise and coordination across multiple medical specialties, clinical utility may be uncertain, and there may be broader familial or societal implications beyond the individual participant. Transdisciplinary consortia and collaborative team science are well poised to address these challenges. However, understanding the complex web of organizational, institutional, physical, environmental, technologic, and other political and societal factors that influence the effectiveness of consortia is understudied. We describe our experience working in the Clinical Sequencing Evidence-Generating Research (CSER) consortium, a multi-institutional translational genomics consortium.

Methods: A key aspect of the CSER consortium was the juxtaposition of site-specific measures with the need to identify consensus measures related to clinical utility and to create a core set of harmonized measures. During this harmonization process, we sought to minimize participant burden, accommodate project-specific choices, and use validated measures that allow data sharing.

Results: Identifying platforms to ensure swift communication between teams and management of materials and data were essential to our harmonization efforts. Funding agencies can help consortia by clarifying key study design elements across projects during the proposal preparation phase and by providing a framework for data sharing data across participating projects.

Conclusions: In summary, time and resources must be devoted to developing and implementing collaborative practices as preparatory work at the beginning of project timelines to improve the effectiveness of research consortia.
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http://dx.doi.org/10.1017/cts.2020.41DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8057449PMC
April 2020

A Longitudinal Observational Study of Multimorbidity and Partner Support for Physical Activity Among People with Osteoarthritis.

Int J Behav Med 2021 Apr 2. Epub 2021 Apr 2.

Northwestern University Feinberg School of Medicine, Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL, USA.

Background: Physical activity can improve osteoarthritis-related symptoms; however, many people with osteoarthritis (PWOA) are insufficiently active. Social support for physical activity from an intimate partner can help PWOA increase activity, but managing multiple, chronic physical or mental health conditions (i.e., multimorbidity) may influence provision and receipt of that support.

Method: Data from a 1-year longitudinal observational study was used to examine associations between multimorbidity and three dimensions of partner support for physical activity-companionship partner support (doing activity together), enacted partner support, and social support effectiveness-in 169 insufficiently active PWOA and their partners.

Results: Multivariable-adjusted multi-level models indicated baseline differences in support by multimorbidity status: when partners had multimorbidity, PWOA reported receiving less companionship support and less effective support from partners; when PWOA had multimorbidity, partners reported providing less enacted support and both partners and PWOA reported less effective partner support. Broad trends (p < .05) indicate initial increases and subsequent decreases in companionship and enacted partner support when PWOA had multimorbidity, and among partners with and without multimorbidity. When PWOA had multimorbidity, an initial increase in support effectiveness was followed by no significant change; a similar trend was seen among partners with and without multimorbidity.

Conclusion: Multimorbidity may generally contribute to less partner support for physical activity or less effective support, although influences on support over time are less clear. Physical activity interventions for couples experiencing multimorbidity would likely benefit from attention to the impact of multiple chronic health conditions on physical activity and physical activity-related partner support.
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http://dx.doi.org/10.1007/s12529-021-09985-xDOI Listing
April 2021

Promoting physical activity in young adult cancer survivors using mHealth and adaptive tailored feedback strategies: Design of the Improving Physical Activity after Cancer Treatment (IMPACT) randomized controlled trial.

Contemp Clin Trials 2021 04 27;103:106293. Epub 2021 Jan 27.

Department of Nutrition, Gillings School of Global Public Health and School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA; Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA; Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

Introduction: Despite the health benefits of physical activity for cancer survivors, nearly 60% of young adult cancer survivors (YACS) are physically inactive. Few physical activity interventions have been designed specifically for YACS.

Purpose: To describe the rationale and design of the IMPACT (IMproving Physical Activity after Cancer Treatment) trial, which tests the efficacy of a theory-based, mobile physical activity intervention for YACS.

Methods: A total of 280 physically inactive YACS (diagnosed at ages 18-39) will be randomized to a self-help control or intervention condition. All participants will receive an activity tracker and companion mobile app, cellular-enabled scale, individual videochat session, and access to a Facebook group. Intervention participants will also receive a 6-month mobile intervention based on social cognitive theory, which targets improvements in behavioral capability, self-regulation, self-efficacy, and social support, and incorporates self-regulation strategies and behavior change techniques. The program includes: behavioral lessons; adaptive goal-setting in response to individuals' changing activity patterns; tailored feedback based on objective data and self-report measures; tailored text messages; and Facebook prompts encouraging peer support. Assessments occur at baseline, 3, 6, and 12 months. The primary outcome is total physical activity min/week at 6 months (assessed via accelerometry); secondary outcomes include total physical activity at 12 months, sedentary behavior, weight, and psychosocial measures.

Conclusions: IMPACT uniquely focuses on physical activity in YACS using an automated tailored mHealth program. Study findings could result in a high-reach, physical activity intervention for YACS that has potential to be adopted on a larger scale and reduce cancer-related morbidity. ClinicalTrials.gov Identifier: NCT03569605.
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http://dx.doi.org/10.1016/j.cct.2021.106293DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8089056PMC
April 2021

Applying the Multiphase Optimization Strategy for the Development of Optimized Interventions in Palliative Care.

J Pain Symptom Manage 2021 Jul 28;62(1):174-182. Epub 2020 Nov 28.

School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA; Center for Palliative and Supportive Care, University of Alabama at Birmingham, Birmingham, Alabama, USA.

Recent systematic reviews and meta-analyses have reported positive benefit of multicomponent "bundled" palliative care interventions for patients and family caregivers while highlighting limitations in determining key elements and mechanisms of improvement. Traditional research approaches, such as the randomized controlled trial (RCT), typically treat interventions as "bundled" treatment packages, making it difficult to assess definitively which aspects of an intervention can be reduced or replaced or whether there are synergistic or antagonistic interactions between intervention components. Progressing toward palliative care interventions that are effective, efficient, and scalable will require new strategies and novel approaches. One such approach is the Multiphase Optimization Strategy (MOST), a framework informed by engineering principles, that uses a systematic process to empirically identify an intervention comprised of components that positively contribute to desired outcomes under real-life constraints. This article provides a brief overview and application of MOST and factorial trial design in palliative care research, including our insights from conducting a pilot factorial trial of an early palliative care intervention to enhance the decision support skills of advanced cancer family caregivers (Project CASCADE).
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http://dx.doi.org/10.1016/j.jpainsymman.2020.11.017DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8274323PMC
July 2021

Impact of prenatal exome sequencing for fetal genetic diagnosis on maternal psychological outcomes and decisional conflict in a prospective cohort.

Genet Med 2021 04 20;23(4):713-719. Epub 2020 Nov 20.

Department of Obstetrics and Gynecology, Division of Maternal-Fetal Medicine University of North Carolina School of Medicine, Chapel Hill, NC, USA.

Purpose: To evaluate associations between prenatal trio exome sequencing (trio-ES) and psychological outcomes among women with an anomalous pregnancy.

Methods: Trio-ES study enrolling patients with major fetal anomaly and normal microarray. Women completed self-reported measures and free response interviews at two timepoints: pre- (1) and post- (2) sequencing. Pre-sequencing responses were compared with post-sequencing responses; post-sequencing responses were stratified by women who received trio-ES results that may explain fetal findings, secondary findings (medically actionable or couples with heterozygous variants for the same recessive disorder), or negative results.

Results: One hundred fifteen trios were enrolled. Of those, 41/115 (35.7%) received results from trio-ES, including 36 (31.3%) who received results that may explain the fetal phenotype. These women had greater post-sequencing distress compared with women who received negative results, including generalized distress (p = 0.03) and test-related distress (p = 0.2); they also had worse psychological adaptation to results (p = 0.001). Genomic knowledge did not change from pre- to post-sequencing (p = 0.51).

Conclusion: Women show more distress after receiving trio-ES results compared with those who do not, suggesting that women receiving results may need additional support or counseling to inform current and future reproductive decisions.
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http://dx.doi.org/10.1038/s41436-020-01025-5DOI Listing
April 2021

Changes in Identification of Possible Pain Coping Strategies by People with Osteoarthritis who Complete Web-based Pain Coping Skills Training.

Int J Behav Med 2021 Aug 10;28(4):488-498. Epub 2020 Nov 10.

Duke University Medical Center, Durham, NC, USA.

Background: We previously demonstrated that automated, Web-based pain coping skills training (PCST) can reduce osteoarthritis pain. The present secondary analyses examined whether this program also changed coping strategies participants identified for use in hypothetical pain-related situations.

Method: People with hip/knee osteoarthritis (n = 107) were randomized to Web-based PCST or standard care control. At baseline and post-intervention, they reported their pain severity and impairment, then completed a task in which they described how they would cope with pain in four hypothetical pain-related situations, also reporting their perceived risk for pain and self-efficacy for managing it. We coded the generated coping strategies into counts of adaptive behavioral, maladaptive behavioral, adaptive cognitive, and discrete adaptive coping strategies (coping repertoire).

Results: Compared to the control arm, Web-based PCST decreased the number of maladaptive behavioral strategies generated (p = 0.002) while increasing the number of adaptive behavioral strategies generated (p = 0.006), likelihood of generating at least one adaptive cognitive strategy (p = 0.01), and the size of participants' coping repertoire (p = 0.009). Several of these changes were associated with changes in pain outcomes (ps = 0.01 to 0.65). Web-based PCST also reduced perceived risk for pain in the situations (p = 0.03) and increased self-efficacy for avoiding pain in similar situations (p < 0.001).

Conclusion: Salutary changes found in this study appear to reflect intervention-concordant learning.
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http://dx.doi.org/10.1007/s12529-020-09938-wDOI Listing
August 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

Genomic Sequencing for Newborn Screening: Results of the NC NEXUS Project.

Am J Hum Genet 2020 10 26;107(4):596-611. Epub 2020 Aug 26.

Department of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA. Electronic address:

Newborn screening (NBS) was established as a public health program in the 1960s and is crucial for facilitating detection of certain medical conditions in which early intervention can prevent serious, life-threatening health problems. Genomic sequencing can potentially expand the screening for rare hereditary disorders, but many questions surround its possible use for this purpose. We examined the use of exome sequencing (ES) for NBS in the North Carolina Newborn Exome Sequencing for Universal Screening (NC NEXUS) project, comparing the yield from ES used in a screening versus a diagnostic context. We enrolled healthy newborns and children with metabolic diseases or hearing loss (106 participants total). ES confirmed the participant's underlying diagnosis in 15 out of 17 (88%) children with metabolic disorders and in 5 out of 28 (∼18%) children with hearing loss. We discovered actionable findings in four participants that would not have been detected by standard NBS. A subset of parents was eligible to receive additional information for their child about childhood-onset conditions with low or no clinical actionability, clinically actionable adult-onset conditions, and carrier status for autosomal-recessive conditions. We found pathogenic variants associated with hereditary breast and/or ovarian cancer in two children, a likely pathogenic variant in the gene associated with Lowe syndrome in one child, and an average of 1.8 reportable variants per child for carrier results. These results highlight the benefits and limitations of using genomic sequencing for NBS and the challenges of using such technology in future precision medicine approaches.
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http://dx.doi.org/10.1016/j.ajhg.2020.08.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7536575PMC
October 2020

Development and validation of a measure of comprehension of genomic screening-negative results (CoG-NR).

Eur J Hum Genet 2020 10 26;28(10):1394-1402. Epub 2020 May 26.

University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

To realize the promise of population genomic screening for rare medically actionable conditions, critical challenges in the return of normal/negative results must be understood and overcome. Our study objective was to assess the functioning of a new 13-item measure (CoG-NR) of understanding of and knowledge about normal/negative genomic screening results for three highly actionable conditions: Lynch Syndrome, Hereditary Breast and Ovarian Cancer, and Familial Hypercholesterolemia. Based on our prior research and expert review, we developed CoG-NR and tested how well it functioned using hypothetical scenarios in three Qualtrics surveys. We report on its psychometric properties and performance across the three different conditions. The measure performed similarly for the three conditions. Examinations of item difficulty, internal reliability, and differential item functioning indicate that the items perform well, with statistically significant positive correlations with genomic knowledge, health literacy, and objective numeracy. CoG-NR assesses understanding of normal/negative results for each of the conditions. The next step is to examine its performance among individuals who have actually undergone such tests, and subsequent use in clinical or research situations. The CoG-NR measure holds great promise as a tool to enhance benefits of population genomic screening by bringing to light the prevalence of incorrect interpretation of negative results.
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http://dx.doi.org/10.1038/s41431-020-0657-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7608237PMC
October 2020

Parental Views on Newborn Next Generation Sequencing: Implications for Decision Support.

Matern Child Health J 2020 Jul;24(7):856-864

Center for Communication Science, RTI International, 3040 E. Cornwallis Road, Research Triangle Park, NC, 27709-2194, USA.

Objective: This study aimed to understand parental decisions, perspectives, values, and beliefs on next generation sequencing in the newborn period (NGS-NBS) to inform the development of a decision aid to support parental decision making in the North Carolina Newborn Exome Sequencing for Universal Screening study.

Methods: We conducted dyadic interviews with 66 current or expectant parents (33 couples) to understand overall decisions about NGS-NBS and reasons for and against learning NGS-NBS results differing by age of onset and medical actionability. Audio recordings were transcribed, coded, and analyzed using qualitative framework analyses.

Results: Favorable views of NGS-NBS included benefits of early intervention, preparedness, child autonomy, and altruism. Unfavorable views were the potential negative effects from early intervention, psychosocial harm, and religious beliefs. Parents universally reported quality of life as important.

Conclusion: Interviews elucidated what is important in deciding to have NGS-NBS. Understanding parental perspectives, values, and beliefs and integrating evidence-based findings into a parent-centric decision aid provides value and support in making decisions related to NGS-NBS, where there is no clear course of action.
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http://dx.doi.org/10.1007/s10995-020-02953-zDOI Listing
July 2020

Better Knee, Better Me™: effectiveness of two scalable health care interventions supporting self-management for knee osteoarthritis - protocol for a randomized controlled trial.

BMC Musculoskelet Disord 2020 Mar 12;21(1):160. Epub 2020 Mar 12.

Hackensack University Medical Center and Georgetown University School of Medicine, Washington, USA.

Background: Although education, exercise, and weight loss are recommended for management of knee osteoarthritis, the additional benefits of incorporating weight loss strategies into exercise interventions have not been well investigated. The aim of this study is to compare, in a private health insurance setting, the clinical- and cost-effectiveness of a remotely-delivered, evidence- and theory-informed, behaviour change intervention targeting exercise and self-management (Exercise intervention), with the same intervention plus active weight management (Exercise plus weight management intervention), and with an information-only control group for people with knee osteoarthritis who are overweight or obese.

Methods: Three-arm, pragmatic parallel-design randomised controlled trial involving 415 people aged ≥45 and ≤ 80 years, with body mass index ≥28 kg/m and < 41 kg/m and painful knee osteoarthritis. Recruitment is Australia-wide amongst Medibank private health insurance members. All three groups receive access to a bespoke website containing information about osteoarthritis and self-management. Participants in the Exercise group also receive six consultations with a physiotherapist via videoconferencing over 6 months, including prescription of a strengthening exercise and physical activity program, advice about management, and additional educational resources. The Exercise plus weight management group receive six consultations with a dietitian via videoconferencing over 6 months, which include a very low calorie ketogenic diet with meal replacements and resources to support behaviour change, in addition to the interventions of the Exercise group. Outcomes are measured at baseline, 6 and 12 months. Primary outcomes are self-reported knee pain and physical function at 6 months. Secondary outcomes include weight, physical activity levels, quality of life, global rating of change, satisfaction with care, knee surgery and/or appointments with an orthopaedic surgeon, and willingness to undergo surgery. Additional measures include adherence, adverse events, self-efficacy, and perceived usefulness of intervention components. Cost-effectiveness of each intervention will also be assessed.

Discussion: This pragmatic study will determine whether a scalable remotely-delivered service combining weight management with exercise is more effective than a service with exercise alone, and with both compared to an information-only control group. Findings will inform development and implementation of future remotely-delivered services for people with knee osteoarthritis.

Trial Registration: Australian New Zealand Clinical Trials Registry: ACTRN12618000930280 (01/06/2018).
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http://dx.doi.org/10.1186/s12891-020-3166-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7068989PMC
March 2020

Overcoming Barriers to Physical Activity in People with Osteoarthritis: the Role of Empathic Accuracy in Couples' Planning Discussions.

Int J Behav Med 2020 Apr;27(2):235-246

Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

Background: Osteoarthritis (OA) is a common chronic joint disease with significant individual and public health consequences. Physical activity can reduce OA symptoms, but patients often fall below recommended levels. Social support from an intimate partner can help them become more active; however, some couples are better than others at enacting effective support. We examined the role of empathic accuracy (EA)-the ability to understand another person's thoughts and feelings-in couples' ability to identify strategies for overcoming barriers to increasing activity. We also examined whether EA was associated with changes in affect and with emotion regulation and communication skills.

Method: Forty-two insufficiently physically active participants with OA identified a barrier to becoming more active in a recorded discussion with their partner. Next, both rated self and partner thoughts and feelings during the discussion. Raters coded EA and whether discussions reached a solution. Affect and skills were assessed with validated questionnaires.

Results: An actor-partner interdependence model found higher EA for participants in couples who reached a solution compared to those who did not reach a solution in the allotted time. Both partners' EA was associated with reduced negative affect in the other member of the couple. Unexpectedly, EA in people with OA was associated with reduced positive affect for their partners. EA was positively associated with one skill: emotional clarity.

Conclusion: Findings from this early-stage study suggest that EA can help couples manage health-related issues together. Emotional clarity emerged as a skill related to EA, suggesting avenues for additional research.
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http://dx.doi.org/10.1007/s12529-020-09856-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7335265PMC
April 2020

Values clarification and parental decision making about newborn genomic sequencing.

Health Psychol 2020 Apr 30;39(4):335-344. Epub 2019 Dec 30.

Center for Communication Science.

Objective: Using an online decision aid developed to support parental decision making about newborn genomic sequencing, we tested whether adding a values clarification exercise to educational content would improve decision making outcomes and influence intention to pursue genomic sequencing. We also examined whether the effect of values clarification varied depending on one's health literacy level.

Method: In an online experiment, women and men aged 18 to 44 who were either pregnant or had a pregnant partner, were currently trying to get pregnant, or were preparing for a pregnancy within the next 2 years were randomly assigned to complete either a decision aid with educational information about newborn genomic sequencing or a decision aid with the same educational information and a values clarification exercise.

Results: Of the 1,000 participants who completed the decision aid, those who completed the values clarification exercise reported less decision regret, (1, 995) = 6.19, = .01, and were clearer about their personal values, (1, 995) = 6.39, = .01. Moderation analyses revealed that the benefit of values clarification on decisional conflict was particularly evident among participants with lower health literacy, = -3.94, = 1.67, = -2.36, = .018. There was not a significant moderation effect of health literacy and decision aid condition on decision regret.

Conclusions: Adding a values clarification exercise to decision aids for parents making decisions about genomic sequencing may improve the decision-making experience and provide some benefit to individuals with lower health literacy. (PsycINFO Database Record (c) 2020 APA, all rights reserved).
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http://dx.doi.org/10.1037/hea0000829DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7078054PMC
April 2020

"I Could Do It in My Own Time and When I Really Needed It": Perceptions of Online Pain Coping Skills Training For People With Knee Osteoarthritis.

Arthritis Care Res (Hoboken) 2020 12;72(12):1736-1746

The University of Melbourne, Parkville, Victoria, Australia.

Objective: To qualitatively explore the perceptions and experiences of people with knee osteoarthritis (OA) who used an online automated pain coping skills training program (PCST).

Methods: This was a descriptive qualitative study (based on interpretivist methodology) embedded within a randomized controlled trial. Individual semistructured interviews were conducted with 12 people with knee OA who had participated in an 8-week automated online PCST program while also receiving exercise advice and support from a physical therapist via Skype. Interviews in this study focused specifically on the online PCST program, rather than the physical therapy component. Interviews were audiorecorded, transcribed verbatim, and thematically analyzed.

Results: Five themes arose: 1) easy to understand and follow (clearly explained, presented well), 2) better able to cope with pain (controlling pain, helping relax, pacing self, incorporating skills into exercise program), 3) anonymity and flexibility (no judgement by clinician, work at own pace, accessibility), 4) not always relatable or engaging (some techniques not useful, Americanization of the program, annoying character examples, time consuming and slow-paced), and 5) support from clinician desirable (follow-up from a clinician would be beneficial, worked in tandem with physical therapist-prescribed exercise, desire referral to the program by a trusted source).

Conclusion: People with knee OA had generally positive experiences using an online PCST program, suggesting that online PCST is a broadly acceptable and accessible way to help people with OA to manage their pain. User engagement may be enhanced by redesigning some aspects of the program and by provision of support from a clinician.
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http://dx.doi.org/10.1002/acr.24093DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7165033PMC
December 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

The Role of Cohabitating Partner and Relationship Characteristics on Physical Activity among Individuals with Osteoarthritis.

Int J Behav Med 2019 Oct;26(5):522-530

John Theurer Cancer Center, Hackensack University Medical Center, 30 Prospect Ave, Hackensack, NJ, 07601, USA.

Background: Most individuals with knee or hip osteoarthritis do not meet recommendations for physical activity. The Social Cognitive Theory suggests that the social environment (e.g., spouses/partners) may influence the physical activity of individuals with osteoarthritis. The purpose of this study was to examine whether the physical activity of insufficiently active, coupled adults with osteoarthritis was associated with received partner support for physical activity, partner's engagement in physical activity, and relationship satisfaction.

Methods: Cross-sectional data from 169 couples were collected. Accelerometers estimated moderate-to-vigorous physical activity and daily steps for participants with osteoarthritis and their partners. Participants with osteoarthritis reported total received partner support for physical activity and relationship satisfaction.

Results: Participants with osteoarthritis were on average 65 years old, 65% female, 86% non-Hispanic white, and 47% retired. Receiving total partner support more frequently was associated with more minutes of moderate-to-vigorous physical activity but not with steps. Relationship satisfaction moderated the association of partner's physical activity on the daily steps of individuals with osteoarthritis such that having a partner who accomplished more daily steps was associated with participants with osteoarthritis accomplishing more daily steps themselves when they reported greater relationship satisfaction.

Conclusions: Partners and relationship satisfaction may play an important role in the physical activity of individuals with osteoarthritis. Interventions seeking to increase physical activity in this population may be enhanced by promoting partner support. Additional research is needed to further explain these associations within the context of relationship satisfaction.
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http://dx.doi.org/10.1007/s12529-019-09806-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7147336PMC
October 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

Effects of Social Support Source and Effectiveness on Stress Buffering After Stem Cell Transplant.

Int J Behav Med 2019 Aug;26(4):391-400

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

Background: This study used the social support effectiveness framework to examine whether effective social support buffered the relationship between stressful life events and distress among hematopoietic stem cell transplant (HSCT) survivors and whether that buffering effect depended on the type of caregiver who provided it (partner versus non-partner caregivers).

Methods: A total of 275 HSCT survivors completed measures of the effectiveness of their caregiver's support-social support effectiveness (SSE)-distress, and stressful life events. Hierarchical linear regression was used to analyze a three-way interaction between stressful life events, caregiver SSE, and caregiver type on distress.

Results: After controlling for covariates, the three-way interaction of stressful life events, caregiver SSE, and caregiver type was significant (b = - 0.21, SE = 0.00, p < 0.001). Among partnered survivors, more stressful life events were associated with greater distress (B = 0.03, SE = 0.01, p = 0.045) when caregiver SSE was low. There was no association between stressful life events and distress when caregiver SSE was average (B = 0.01, SE = 0.01, p = 0.50) or high (B = - 0.01, SE = 0.02, p = 0.61). Among non-partnered survivors, there was a positive association between stressful life events and distress regardless of caregiver SSE.

Conclusions: Average or highly effective caregiver support buffered effects of stressful life events on distress among partnered survivors. There was no evidence that support at any level of effectiveness buffered stressful life events among non-partnered survivors. Findings highlight the importance of measuring social support effectiveness and source of support among HSCT survivors.
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http://dx.doi.org/10.1007/s12529-019-09787-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6839542PMC
August 2019

Relationship of parent-child sun protection among those at risk for and surviving with melanoma: Implications for family-based cancer prevention.

Transl Behav Med 2019 05;9(3):480-488

Department of Bioethics & Humanities, University of Washington, Washington, USA.

Preventing melanoma, the most serious form of skin cancer, is an important cancer control priority. This is especially true among children living in families previously affected by the disease because the risks for melanoma typically begin early in life. These risks accrue into adulthood but may be mitigated by parental intervention. Melanoma prevention behaviors that could be associated between adults and their children include use of sunscreen, protective clothing, seeking shade, or limiting sun exposure. This study sought to investigate how parent perceptions and behaviors influence sun protection and avoidance behaviors in their children, among relatives of melanoma survivors. In this cross-sectional study, parents (N = 313), all relatives of people diagnosed with melanoma, were surveyed about their melanoma risk-reduction behaviors and efforts to protect their children from sun exposure. Linear multiple regressions examined associations among parental behaviors, beliefs, and their reports of risk reduction for their children. Parents who practiced high sun protection themselves (i.e., wearing protective clothing, avoiding the sun, using sunscreen) were significantly more likely to report their child also wore protective clothing (B = 0.04, p < .004). Findings suggest that parents' use of risk-reducing behavioral measures extended to protective measures among their children. These findings have implications for the clinical care of melanoma survivors' families, including the design of targeted interventions that alter parental beliefs and behaviors surrounding both their own and their children's cancer prevention strategies.
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http://dx.doi.org/10.1093/tbm/ibz032DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6520807PMC
May 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

Pretreatment Psychoneurological Symptoms and Their Association With Longitudinal Cognitive Function and Quality of Life in Older Breast Cancer Survivors.

J Pain Symptom Manage 2019 03 23;57(3):596-606. Epub 2018 Nov 23.

Georgetown University and Lombardi Comprehensive Cancer Center, Washington, District of Columbia, USA.

Context: Symptoms affect quality of life (QOL), functional status, and cognitive function in cancer survivors, but older survivors are understudied.

Objectives: The objectives of this study were to identify prototypical presystemic therapy psychoneurological symptom clusters among older breast cancer survivors and determine whether these symptom clusters predicted cognition and QOL over time.

Methods: Women with newly diagnosed nonmetastatic breast cancer (n = 319) and matched noncancer controls (n = 347) aged 60+ years completed questionnaires and neuropsychological tests before systemic therapy and 12 and 24 months later. Latent class analysis identified clusters of survivors based on their pretherapy depression, anxiety, fatigue, sleep disturbance, and pain. Linear mixed-effects models examined changes in objective cognition, perceived cognition, and functional status (Instrumental Activities of Daily Living disability, functional well-being, and breast cancer-specific QOL) by group, controlling for covariates.

Results: Nearly one-fifth of older survivors were classified as having high pretherapy symptoms (n = 51; 16%); the remainder had low symptoms (n = 268; 84%); both groups improved over time on all outcomes. However, compared to the low symptom group and controls, survivors with high symptoms had lower baseline objective cognition and lower perceived cognition at baseline and 24 months, lower functional well-being at baseline and 12 months, greater Instrumental Activities of Daily Living disability at baseline, and lower breast cancer-specific QOL at all time points (all P < 0.05).

Conclusion: Nearly one-fifth of older breast cancer survivors had high psychoneurological symptoms at diagnosis, which predicted clinically meaningful decrements in perceived cognition and function in the first 24 months after diagnosis. Pretreatment psychoneurological symptom clusters could identify survivors for monitoring or intervention.
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http://dx.doi.org/10.1016/j.jpainsymman.2018.11.015DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6382533PMC
March 2019

A behavior-theoretic evaluation of values clarification on parental beliefs and intentions toward genomic sequencing for newborns.

Soc Sci Med 2021 02 9;271:112037. Epub 2018 Nov 9.

RTI International, Research Triangle Park, NC, United States.

Decision aids commonly include values clarification exercises to help people consider which aspects of a choice matter most to them, and to help them make decisions that are congruent with their personal values and preferences. Using a randomized online experiment, we examined the influence of values clarification on parental beliefs and intentions about having genomic sequencing for newborns. We recruited 1186 women and men ages 18-44 who were pregnant or whose partner was pregnant or planning to become pregnant in the next two years. Participants (N = 1000) completed one of two versions of an online decision aid developed as part of a larger project examining the technical, clinical, and social aspects of using exome sequencing to screen newborns for rare genetic conditions. The education-only version provided information about using genomic sequencing to screen newborns for medically treatable conditions. The education-plus-values-clarification version included the same information, along with a values clarification exercise in which participants classified as important or unimportant five reasons in support of having and five reasons against having their newborn undergo genomic sequencing. We conducted partial correlations, regression analysis, and MANCOVAs with sex, health literacy, and experience with genetic testing as covariates. Participants who completed the decision aid with the values clarification exercise agreed less strongly with four of the five statements against sequencing compared to participants who viewed the education-only decision aid. The groups did not differ on agreement with reasons in support of sequencing. Agreement with four of five reasons against genomic sequencing was negatively associated with intentions to have their newborn sequenced, whereas agreement with all five reasons in support of sequencing were positively associated with intentions.
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http://dx.doi.org/10.1016/j.socscimed.2018.11.017DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6509013PMC
February 2021

A mixed methods analysis of perceived cognitive impairment in hematopoietic stem cell transplant survivors.

Palliat Support Care 2019 08;17(4):396-402

John Theurer Cancer Center, Hackensack University Medical Center, Hackensack, New Jersey, United States.

Objective: Hematopoietic stem cell transplant (HSCT) survivors may show evidence of objective cognitive impairment; however, perceived cognitive problems and their impact on quality of life are less well-understood. The purpose of this study was to explore HSCT survivors' perceptions of cognitive impairment and its effect on daily life functioning.

Method: Sixty-nine autologous and allogeneic HSCT survivors nine months to three years posttransplant experiencing mild survivorship problems completed a brief structured interview regarding perceived cognitive impairment since transplant. Data were coded and content analyzed. The frequency of participants reporting cognitive problems by domain and associations between reports of cognitive problems and age, depressed mood, anxiety, and health-related quality of life were examined.

Result: Overall, 49 of the 69 participants (71%) reported cognitive impairments after transplant: 38 in memory (55%), 29 in attention and concentration (42%), and smaller numbers in other domains. There were no significant differences in problems reported by transplant type. Of the 50 participants who worked before transplant, 19 (38%) did not return to work following transplant, with 12 citing cognitive and health problems as being the reason. There were significant associations between reports of cognitive impairment and younger age (p = 0.02), depressed mood (p = 0.02), anxiety (p = 0.002), and health-related quality of life (p = 0.008).

Significance Of Results: A large proportion of survivors reported cognitive impairment following HSCT that impaired daily life functioning. Perceived cognitive impairment was associated with younger age, greater distress and reduced health-related quality of life.
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http://dx.doi.org/10.1017/S1478951518000664DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6428641PMC
August 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
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