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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.

PURPOSE: Cancer survivors frequently describe wanting to learn from others who have had similar diagnoses or treatments (peer support). We conducted focus groups to investigate hematopoietic stem cell transplant survivors’ attitudes and preferences regarding accessing written peer support through a website. Although written peer support does not allow for interpersonal interactions with peers, it could increase transplant recipients’ access to evidence-based benefits of informational and emotional peer support. METHODS: We conducted four videoconference focus groups with 34 adult transplant survivors who were diverse in their medical and sociodemographic characteristics and geographic location. Discussions were recorded, transcribed, and content analyzed. RESULTS: Many participants reported need for information about transplant beyond what they received from their healthcare providers. Needs varied across participants, as did preferences for characteristics and timing of information optimally provided through peer support. Participants were enthusiastic about the value of written peer support but emphasized that it should be delivered in a way that accommodates variation in transplant experiences, underscores its trustworthiness, and pairs it with useful psychoeducational content. CONCLUSIONS: Findings provide guidance for making written peer support an accessible, supportive resource for transplant survivors. Future research should evaluate personalized online delivery of written peer support paired with psychoeducational content that enhances its benefits. IMPLICATIONS FOR CANCER SURVIVORS: Written peer support delivered online could be a useful, valued resource for transplant survivors.

BACKGROUND AND OBJECTIVES: Successful clinical integration of genomic sequencing (GS) requires evidence of its utility. While GS potentially has benefits (utilities) or harms (disutilities) across multiple domains of life for both patients and their families, there is yet no empirically informed conceptual model of these effects. Our objective was to develop an empirically informed conceptual model of perceived utility of GS that captures utilities and disutilities for patients and their families across diverse backgrounds. METHODS: We took a patient-centered approach in which we began with a review of existing literature followed by collection of primary interview data. We conducted semi-structured interviews to explore types of utility in a clinically and sociopolitically diverse sample of 60 adults from seven Clinical Sequencing Evidence-Generating Research (CSER) consortium projects. Interviewees had either personally received, or were parents of a child who had received, GS results. Qualitative data was analysed using thematic analysis. Findings from interviews were integrated with existing literature on clinical and personal utility to form the basis of an initial conceptual model that was refined based on expert review and feedback. RESULTS: Five key utility types that have been previously identified in qualitative literature held up as primary domains of utility and disutility in our diverse sample. Interview data were used to specify and organize subdomains of an initial conceptual model. After expert refinement, the five primary domains included in the final model are: clinical, emotional, behavioral, cognitive, and social, and several sub-domains are specified within each. CONCLUSION: We present an empirically-informed conceptual model of perceived utility of GS. This model can be used to guide development of instruments for patient-centered outcome measurement that capture the range of relevant utilities and disutilities and inform clinical implementation of GS.

Aim: 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. Methods: A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed. Results: Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population. Discussion: This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants.

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.

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. 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. 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. 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.

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, F(1, 995) = 6.19, p = .01, and were clearer about their personal values, F(1, 995) = 6.39, p = .01. Moderation analyses revealed that the benefit of values clarification on decisional conflict was particularly evident among participants with lower health literacy, B = -3.94, SE = 1.67, t = -2.36, p = .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).

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 multi-dimensional 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 post-disclosure 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.

Background During, shortly after, and sometimes for years after hematopoietic stem cell transplant, a large proportion of hematological cancer patients undergoing transplant report significant physical and psychological symptoms and reduced health-related quality of life. To address these survivorship problems, we developed a low-burden, brief psychological intervention called expressive helping that includes two theory- and evidence-based components designed to work together synergistically: emotionally expressive writing and peer support writing. Building on evidence from a prior randomized control trial showing reductions in physical symptoms and distress in long-term transplant survivors with persistent survivorship problems, the Writing for Insight, Strength, and Ease (WISE) trial will evaluate the efficacy of expressive helping when used during transplant and in the early post-transplant period, when symptoms peak, and when intervention could prevent development of persistent symptoms. Methods WISE is a multi-site, two-arm randomized controlled efficacy trial. Adult hematological cancer patients scheduled for a hematopoietic stem cell transplant will complete baseline measures and then, after hospitalization but prior to transplant, they will be randomized to complete either expressive helping or a time and attention “neutral writing” task. Both expressive helping and neutral writing involve four brief writing sessions, beginning immediately after randomization and ending approximately 4 weeks after hospital discharge. Measures of symptom burden (primary outcome), distress, health-related quality of life, and fatigue (secondary outcomes) will be administered in seven assessments coinciding with medically relevant time points from baseline and to a year post-intervention. Discussion The steady and continuing increase in use of stem cell transplantation has created growing need for efficacious, accessible interventions to reduce the short- and long-term negative physical and psychosocial effects of this challenging but potentially life-saving treatment. Expressive helping is a psychological intervention that was designed to fill this gap. It has been shown to be efficacious in long-term transplant survivors but could have even greater impact if it is capable of reducing symptoms during and soon after transplant. The WISE study will evaluate these benefits in a rigorous randomized controlled trial. Trial registration Clinicaltrial.govNCT03800758. Registered January 11, 2019

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).

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).

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.

ObjectiveHematopoietic 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.MethodSixty-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.ResultOverall, 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 resultsA 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.

Background: Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants' perceived ease when deciding to join and their understanding of key study features. Methods: Individuals were recruited via mailings that directed them to a website where they could learn more about GeneScreen, consent to participate, and complete a survey. Results: Participants found it easy to decide to join GeneScreen and had a good understanding of study features. Multiple regression analyses revealed that ease of deciding to join was related to confidence in one's genetic self-efficacy, limited concerns about genetic screening, trust in and lack of frustration using the website, and the ability to spend a limited time on the website. Understanding of study features was related to using the Internet more frequently and attaining more information about GeneScreen conditions. Conclusions: The ease of deciding to join a genomic screening study and comprehension of its key features should be treated as different phenomena in research and practice. There is a need for a more nuanced understanding of how individuals respond to web-based consent information.

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.

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.

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.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.Multivariate models revealed higher genomic knowledge at baseline for non-Hispanic Whites and those with higher income, education, and health literacy (p values0.001). 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 to0.001).Findings extend understanding of the role of genomic knowledge in psychological outcomes of diagnostic exome sequencing, providing guidance for additional research and interventions.

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.

There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients. Surveys and focus groups with two patient populations were conducted. Eighty-eight survey participants were asked to rank four terms according to how well each describes results unrelated to the test indication: incidental findings, secondary findings, additional findings, and ancillary findings. Participants in six focus groups were guided through a free-thought exercise to describe the desired attributes of such a term and then asked to formulate the best term to represent this concept. The term additional findings had the most first-choice rankings by survey participants, followed by secondary findings, incidental findings, and ancillary findings. Most focus group participants preferred the term additional findings; they also gave reasons why other terms were not optimal. Additional findings was preferred because it was more neutral and accessible than other terms currently in use. Patient perceptions and comprehension will be framed by the terminology used by healthcare providers. Thus, patient opinions should be considered by medical genetics professionals. Genet Med 19 2, 176–181.

© 2018 American Society of Human Genetics The Clinical Sequencing Evidence-Generating Research (CSER) consortium, now in its second funding cycle, is investigating the effectiveness of integrating genomic (exome or genome) sequencing into the clinical care of diverse and medically underserved individuals in a variety of healthcare settings and disease states. The consortium comprises a coordinating center, six funded extramural clinical projects, and an ongoing National Human Genome Research Institute (NHGRI) intramural project. Collectively, these projects aim to enroll and sequence over 6,100 participants in four years. At least 60% of participants will be of non-European ancestry or from underserved settings, with the goal of diversifying the populations that are providing an evidence base for genomic medicine. Five of the six clinical projects are enrolling pediatric patients with various phenotypes. One of these five projects is also enrolling couples whose fetus has a structural anomaly, and the sixth project is enrolling adults at risk for hereditary cancer. The ongoing NHGRI intramural project has enrolled primarily healthy adults. Goals of the consortium include assessing the clinical utility of genomic sequencing, exploring medical follow up and cascade testing of relatives, and evaluating patient-provider-laboratory level interactions that influence the use of this technology. The findings from the CSER consortium will offer patients, healthcare systems, and policymakers a clearer understanding of the opportunities and challenges of providing genomic medicine in diverse populations and settings, and contribute evidence toward developing best practices for the delivery of clinically useful and cost-effective genomic sequencing in diverse healthcare settings.

Purpose In genomics, the return of negative screening results for rare, medically actionable conditions in large unselected populations with low prior risk of disease is novel and may involve important and nuanced concerns for communicating their meaning. Recruitment may result in self-selection because of participants’ personal or family history, changing the characteristics of the screened population and interpretation of both positive and negative findings; prior motivations may also affect responses to results. Methods Using data from GeneScreen, an exploratory adult screening project that targets 17 genes related to 11 medically actionable conditions, we address four questions: 1) Do participants self-select based on actual or perceived risk for one of the conditions? 2) Do participants understand negative results? 3) What are their psychosocial responses? 4) Are negative results related to changes in reported health-related behaviors? Results We found disproportionate enrollment of individuals at elevated prior risk for conditions being screened, and a need to improve communication about the nature of screening and meaning of negative screening results. Participants expressed no decision regret and did not report intention to change health-related behaviors. Conclusion This study illuminates critical challenges to overcome if genomic screening is to benefit the general population.

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 NCGENES (North Carolina Clinical Genomic Evaluation by Next Generation Exome Sequencing) 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 provide 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.

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. 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. 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). Intentions to request SFs with low or no medical actionability may be strongly influenced by participants’ desire to avoid regret.

PurposeWe investigated the diagnostic and clinical performance of exome sequencing in fetuses with sonographic abnormalities with normal karyotype and microarray and, in some cases, normal gene-specific sequencing.MethodsExome sequencing was performed on DNA from 15 anomalous fetuses and from the peripheral blood of their parents. Parents provided consent to be informed of diagnostic results in the fetus, medically actionable findings in the parents, and their identification as carrier couples for significant autosomal recessive conditions. We assessed the perceptions and understanding of exome sequencing using mixed methods in 15 mother-father dyads.ResultsIn seven (47%) of 15 fetuses, exome sequencing provided a diagnosis or possible diagnosis with identification of variants in the following genes: COL1A1, MUSK, KCTD1, RTTN, TMEM67, PIEZO1 and DYNC2H1. One additional case revealed a de novo nonsense mutation in a novel candidate gene (MAP4K4). The perceived likelihood that exome sequencing would explain the results (5.2 on a 10-point scale) was higher than the approximately 30% diagnostic yield discussed in pretest counseling.ConclusionExome sequencing had diagnostic utility in a highly select population of fetuses where a genetic diagnosis was highly suspected. Challenges related to genetics literacy and variant interpretation must be addressed by highly tailored pre- and posttest genetic counseling.

Objectives:Survivors of hematopoietic stem cell transplant (HSCT) have experienced a life threatening and potentially traumatic illness and treatment that make them vulnerable to long lasting negative psychological outcomes, including anxiety and depression. Nevertheless, studies show that overcoming cancer and its treatment can present an opportunity for personal growth and psychological health (reduced symptoms of anxiety and depression and high levels of emotional well-being) through resilience. However, research has not yet clarified what differentiates HSCT survivors who experience psychological growth from those who do not. By analyzing recovery narratives, we examined whether HSCT survivors’ interpretation of their experiences helps explain differences in their post-treatment psychological health.Methods:Guided by narrative psychology theory, we analyzed the narratives of 23 HSCT survivors writing about their experience of cancer treatment. Psychological health was measured by: (1) emotional well-being subscale part of the Functional Assessment of Cancer Therapy Bone Marrow Transplant (FACT-BMT), (2) depression, and (3) anxiety subscales of the Brief Symptom Inventory.Results:Findings revealed a positive relation between psychological health and a greater number of redemption episodes (going from an emotionally negative life event to an emotionally positive one) as well as fewer negative emotional expressions.Significance of the results:Theoretical and practical implications of these findings are discussed, showing how narratives can inform interventions to assist cancer survivors with their psychological recovery.

Despite rapid technical progress and demonstrable effectiveness for some types of diagnosis and therapy, much remains to be learned about clinical genome and exome sequencing (CGES) and its role within the practice of medicine. The Clinical Sequencing Exploratory Research (CSER) consortium includes 18 extramural research projects, one National Human Genome Research Institute (NHGRI) intramural project, and a coordinating center funded by the NHGRI and National Cancer Institute. The consortium is exploring analytic and clinical validity and utility, as well as the ethical, legal, and social implications of sequencing via multidisciplinary approaches; it has thus far recruited 5,577 participants across a spectrum of symptomatic and healthy children and adults by utilizing both germline and cancer sequencing. The CSER consortium is analyzing data and creating publically available procedures and tools related to participant preferences and consent, variant classification, disclosure and management of primary and secondary findings, health outcomes, and integration with electronic health records. Future research directions will refine measures of clinical utility of CGES in both germline and somatic testing, evaluate the use of CGES for screening in healthy individuals, explore the penetrance of pathogenic variants through extensive phenotyping, reduce discordances in public databases of genes and variants, examine social and ethnic disparities in the provision of genomics services, explore regulatory issues, and estimate the value and downstream costs of sequencing. The CSER consortium has established a shared community of research sites by using diverse approaches to pursue the evidence-based development of best practices in genomic medicine.

Hematopoietic stem cell transplant survivors often share advice with patients undergoing this difficult treatment. We content analyzed narratives written by 59 transplant survivors given the opportunity to share advice with patients. Analyses described categories of advice they shared and evaluated their perceptions of the helpfulness of advice they had received. We found nine advice categories and evidence for variation in their perceived helpfulness, especially for advice to “be your own advocate,” “have someone you can rely on,” and “think positive.” Findings suggest the need to investigate how seemingly innocuous advice can be unhelpful and potentially distressing to some patients.

For patients with unexplained or undiagnosed conditions, genomic sequencing offers the hope of resolving unanswered questions. With the growth of clinical genomic sequencing, understanding factors that shape patients' hope for information could have important implications for developing patient education guidelines. Based on the goal-directed theory of hope, we investigated illness uncertainty as a form of motivation and subjective social status as a form of perceived resources to predict the amount and kinds of information that adult patients (N=191) and parents of pediatric patients (N=79) hoped to receive from diagnostic sequencing results. Participants were part of a larger longitudinal study on clinical genomic sequencing, but the current study focuses on their hopes for diagnostic sequencing results. Hopes for information were assessed through close-ended and open-ended responses. Findings from mixed methods analyses indicated that although patients and parents hoped to learn multiple kinds of information from diagnostic sequencing results, their hopes appeared to be influenced by their illness uncertainty and perceptions of their social and economic resources. These findings suggest that patients' illness uncertainty and perceived resources could be useful avenues for discussing patient hopes and educating patients about strengths and limitations of genomic sequencing.

Using a sense-making and threat management framework in rumor psychology, the authors used an exploratory web survey (n = 169) to query members of online cancer discussion groups about informal cancer statements heard from nonmedical sources (i.e., cancer rumors). Respondents perceived that rumors helped them cope. Dread rumors exceeded wish rumors; secondary control (control through emotional coping) rumors outnumbered primary control (direct action) rumors. Rumor content focused on cancer lethality, causes, and suffering. Rumors came primarily from family or friends in face-to-face conversations. Respondents discussed rumors with medical personnel primarily for fact-finding purposes, but with nonmedical people for altruistic, emotional coping, or relationship enhancement motives. Transmitters (vs. nontransmitters) considered rumors to be more important, were more anxious, and felt rumors helped them cope better, but did not believe them more strongly or feel that they were less knowledgeable about cancer. Most respondents believed the rumors; confidence was based on trust in family or friends (disregarding source nonexpertise) and concordance with beliefs, attitudes, and experience. Results point toward the fruitfulness of using rumor theory to guide research on cancer rumors and suggest that rumors help people achieve a sense of emotional control for dreaded cancer outcomes, inform the social construction of cancer, and highlight the continuing importance of nonelectronic word of mouth.

Maternal postpartum emotional distress is quite common and can pose significant risk to mothers and infants. The current study investigated mothers' relationships with their partners during pregnancy and tested the hypotheses that perception of prenatal partner support is a significant predictor of changes in maternal emotional distress from midpregnancy to postpartum, and contributes to maternal ratings of infant distress to novelty. Using a prospective longitudinal design, 272 adult pregnant women were interviewed regarding their partner support, relationship satisfaction, and interpersonal security (attachment style and willingness to seek out support), and they completed standardized measures of prenatal symptoms of depression and anxiety (distress). At 6 to 8 weeks' postpartum, mothers reported these symptoms again and completed measures of their infants' temperament. Structural equation modeling (SEM) was used to test direct and indirect contributions of partner support, relationship satisfaction, and interpersonal security to maternal and infant postpartum distress. Mothers who perceived stronger social support from their partners midpregnancy had lower emotional distress postpartum after controlling for their distress in early pregnancy, and their infants were reported to be less distressed in response to novelty. Partner support mediated the effects of mothers' interpersonal security and relationship satisfaction on maternal and infant outcomes. A high-quality, supportive partner relationship during pregnancy may contribute to improved maternal and infant well-being postpartum, indicating a potential role for partner relationships in mental health interventions, with possible benefits for infants as well.

Therapeutic alliance is an established reliable predictor of successful therapy across patient populations and treatment modalities (e.g., Horvath & Symonds, 1991), including cognitive and behavioral (Waddington, 2002) and short-term dynamic (Crits-Christoph & Connolly, 1999) therapies. Benefits of a strong therapeutic alliance occur in face-to-face therapy, as well as therapies delivered over the phone or via the Internet (e.g., Cook & Doyle, 2004; Klein et al., 2009; Knaevelsrud & Maercker, 2007). Despite increasing use of various psychotherapies to improve cancer patients’ quality of life (e.g., Baik & Adams, 2011), studies of therapeutic alliance in therapies used with this population are limited (for a review, see Schnur & Montgomery, 2010). The present study evaluated the role of therapeutic alliance in telephone-administered cognitive-behavioral therapy (T-CBT) for the treatment of posttraumatic stress disorder (PTSD) symptoms in hematopoietic stem cell transplantation (HSCT) survivors. PTSD is experienced by a substantial proportion of HSCT survivors (Mosher et al., 2009), and often involves feelings of detachment from others, which may impede the ability to form a solid therapeutic alliance. The randomized trial (Duhamel et al., 2010) found that, compared to survivors in an assessment-only control group, those who completed T-CBT reported fewer illness-related PTSD symptoms, including less avoidance and fewer intrusive thoughts, as well as less general distress and fewer depressive symptoms. These benefits were maintained over a 12 month follow-up period. The present study examined the role of therapeutic alliance in these outcomes. We hypothesized that survivors who completed T-CBT would have greater decreases in PTSD symptoms, depressive symptoms, and general distress if they had high rather than low therapeutic alliance.

Cancer survivors treated with hematopoietic stem cell transplant rely on their social network for successful recovery. However, some survivors have negative attitudes about using social resources (negative social network orientation) that are critical for their recovery.We examined the association between survivors' social network orientation and health-related quality of life (HRQoL) and whether it was mediated by social resources (network size, perceived support, and negative and positive support-related social exchanges).In a longitudinal study, 255 survivors completed validated measures of social network orientation, HRQoL, and social resources. Hypotheses were tested using path analysis.More negative social network orientation predicted worse HRQoL (p .001). This association was partially mediated by lower perceived support and more negative social exchanges.Survivors with negative social network orientation may have poorer HRQoL in part due to deficits in several key social resources. Findings highlight a subgroup at risk for poor transplant outcomes and can guide intervention development.

The self-management behaviors of individuals with medical conditions that have an unknown etiology have not been studied. This study assesses the relationship between illness perceptions and various illness self-management behaviors in patients undergoing clinical genomic sequencing to identify a genetic cause for their condition. Hierarchical linear regression, Poisson linear regression, and logistic regression were used to assess the effect of illness perceptions (i.e., perceived consequences, timeline, personal control, treatment control, identity, concern, understanding, emotional impact, and causal beliefs as measured by the Brief Illness Perceptions Questionnaire) on healthcare use, prescription medication use, and doctor recommended supplement use, respectively (n = 200). Analyses revealed that (1) illness identity beliefs were positively associated with healthcare use (β = 0.20, p = 0.04), (2) both treatment control beliefs (B = 0.03, p = 0.02) and genetic causal beliefs (B = 0.17, p = 0.049) were positively associated with prescription medication use, and (3) both timeline beliefs (OR 1.23, p = 0.02) and emotional impact (OR 1.20, p = 0.02) were positively associated with doctor recommended supplement use. These findings can be used to inform the development of guidelines for treating patients who are seeking a genetic diagnosis for their illness.

Objective: Hematopoietic stem cell transplant (HSCT) survivors who are 1 to 3 years posttransplant are challenged by the need to resume valued social roles and activities—a task that may be complicated by enduring transplant-related psychological distress common in this patient population. The present study investigated whether transplant survivors who receive adequate social support from their spouse or intimate partner experience lower distress. Method: Effects of receiving a greater quantity of partner support (a common approach to studying enacted support) were compared with effects of receiving more effective partner support (i.e., support that more closely matches their needs in terms of its quantity and quality). Men and women (N 230) who were 1 to 3 years posttransplant completed measures of partner support quantity (Manne & Schnoll, 2001), partner social support effectiveness (Rini & Dunkel Schetter, 2010), and psychological distress (Brief Symptom Inventory; Derogatis & Spencer, 1982). Potential medical and sociodemographic confounds were controlled in analyses. Results: As hypothesized, survivors reported less distress when they received more effective partner support (p .001). Quantity of partner support was not associated with distress (p .23). An interaction revealed that when partner support was effective, the quantity of support survivors received was not associated with their distress (p .90); however, when partner support was ineffective, receiving a greater quantity of partner support was associated with substantially elevated distress (p .002). Conclusions: Findings suggest that clinical approaches to addressing or preventing enduring distress after HSCT should target features of partner support related to its appraised effectiveness.

This study examined quality of life, transplant-related concerns, and depressive symptoms and their demographic and medical correlates at 1 to 3 years following hematopoietic stem cell transplantation (HSCT).HSCT survivors (N=406) completed telephone-administered questionnaires that assessed demographic variables, functional status, quality of life, transplant-related concerns, and depressive symptoms.The most prevalent concerns among HSCT survivors included physical symptoms (e.g., fatigue and pain), maintaining current health status and employment, changes in appearance, and lack of sexual interest and satisfaction. In addition, almost one-third (32%) of survivors age 40 years and younger reported concern about their ability to have children. Unemployed survivors and those with lower incomes and worse functional status were more likely to experience poorer quality of life in multiple domains. Fifteen percent of the sample reported moderate to severe depressive symptoms, and these symptoms were higher among allogeneic transplant recipients and those with lower functional status.Results suggest that interventions are needed to address physical symptoms, coping with an uncertain future, infertility, and sexual issues during the early phase of HSCT survivorship.

The present study investigated relations between reported childhood abuse and recent traumatic stress symptoms in women newly diagnosed with breast cancer (n=330).As part of a larger ongoing study, patients from eight public and private hospitals were referred by their physicians and completed the Childhood Trauma Questionnaire (CTQ), and the Impact of Events Scale-breast cancer (IES), which measured breast cancer-related intrusive and avoidant symptoms.Emotional abuse, physical abuse, and sexual abuse were correlated with intrusive symptoms. Cancer-related avoidant symptoms approached significance in their relation to emotional and sexual abuse. Multivariate analysis, controlling for age and time since diagnosis, revealed that childhood emotional abuse was an independent predictor of breast cancer-related intrusive symptoms, but that childhood physical abuse and sexual abuse were not significant predictors.Childhood emotional, physical, and sexual abuse were associated with breast cancer-related intrusive symptoms. Emotional abuse uniquely predicted intrusive symptoms after controlling for other predictors. Results suggest that a cancer diagnosis may trigger cognitive and emotional responses that relate to patients' prior trauma experiences.Physicians and psychologists treating women with breast cancer should be aware that a history of childhood abuse may exacerbate patients' cancer-related intrusive symptoms. Interventions for women affected by both childhood abuse and breast cancer may be most effective when they address both stressors and associated emotional responses. Findings highlight the importance of additional research to explore links between prior trauma and distress following a cancer diagnosis stress.

BRCA1/BRCA2 (BRCA1/2) gene testing increasingly has become part of routine clinical care for high-risk women. Mutations in BRCA1/2 confer a 40–66% lifetime risk of developing breast cancer, with up to a 52% lifetime risk of developing a new, contralateral breast cancer, and a 13–46% risk of ovarian cancer [1,2]. BRCA1/2 testing typically begins with a breast and/or ovarian cancer-affected individual (proband). Testing then is offered to family members if a risk-conferring mutation is detected. However, uninformative test results, in which a deleterious mutation is neither identified nor definitively ruled out, are possible and indeed, quite common [3,4]. Three distinct reasons for an uninformative result include: 1) not detecting a mutation in an affected individual from a high-risk family after fully sequencing the BRCA1/2 genes (BRCA1/2 negative); 2) not detecting a mutation in an affected high-risk individual of Ashkenazi Jewish descent after targeted testing for three common founder mutations responsible for the majority of cases in this population (Ashkenazi Panel negative) [5–9]; and 3) detecting a genetic variant of uncertain clinical significance (VUCS). Research examining distress among women seeking BRCA1/2 testing has focused on three primary outcomes: situation-specific distress, including cancer-related distress [10] and less commonly, genetic testing-related distress [11], as well as global anxiety and depressive symptoms [12]. Distress generally is heightened pre-testing. This dissipates somewhat after receipt of uninformative BRCA1/2 test results, reaching levels that are higher than those of women receiving true negative test results and comparable to or slightly lower than those of mutation carriers [3,13–16]. Although the impact of modest ongoing distress in this population is unclear, moderately heightened distress predicts subsequent rates of contralateral prophylactic mastectomy in mutation carriers [17] and “over-adherence” to BSE and CBE among women with strong family histories of breast cancer [18]. In this report, we use Baum, Friedman and Zakowski’s [19] adaptation of the Transactional Model of Stress and Coping [20] as a guiding framework to examine predictors of distress. Briefly, the Transactional Model states that when people experience a stressor, they evaluate the relevance of the situation (primary appraisal) and their coping resources (secondary appraisal), implement coping strategies, and experience an emotional outcome. Baum and colleagues propose that these appraisals and overall adjustment to genetic testing is determined by: 1) test result and related uncertainty, 2) personal and family history of disease, 3) risk-reduction and disease management options, and 4) individual differences. Test Result and Uncertainty As noted, three types of uninformative BRCA1/2 test results include: BRCA1/2 negative, Ashkenazi Panel negative and a VUCS. The latter result indicates that a sequence alteration was detected, but whether this variation is deleterious or a benign polymorphism is unknown, making the associated risk highly variable and difficult to assess [21]. The increased uncertainty associated with receiving a VUCS may result in heightened distress, though previous studies utilizing very small samples have found no effect [3,22]. Personal and Family History of Disease Residual risk estimates for women receiving uninformative BRCA1/2 test results are highly variable and dependent primarily upon personal and family cancer history. Cancer-affected women report higher levels of cancer-related distress than unaffected women, as do those with higher pedigree-based risk [14] and those diagnosed more recently [15]. These clinical features also predict how likely women with uninformative BRCA1/2 test results believe they are to carry a deleterious mutation [3], potentially impacting long-term outcomes. Research has not examined whether other risk-conferring variables impact distress [23]. Risk Reduction and Disease Management Options Women at high risk for breast and/or ovarian cancer can manage their cancer risk through risk-reducing surgery [24] and enhanced screening [25]. While specific screening guidelines exist for mutation carriers, no established guidelines exist for women who receive uninformative BRCA1/2 test results [26]. In addition to uncertainty regarding future risk-management decisions, the impact of having had prophylactic mastectomy prior to receiving uninformative BRCA1/2 test results is unclear [14], potentially resulting in regret or relief from having to make further risk-management decisions [27]. Individual Difference Factors Individual differences, such as sociodemographics, personality, and cognitive appraisals may predict distress. According to our guiding conceptual model, appraisals regarding the stressfulness of genetic testing (primary appraisals) and perceived coping ability (secondary appraisals) should predict adjustment. Carriers report stronger primary appraisals than other groups post-testing, as do those with higher trait anxiety [28], but we do not know whether appraisals predict emotional outcomes. Further, younger women, those who retain heightened post-testing perceived breast cancer risk, and those reporting discomfort when confronting uncertain information report greater post-testing distress [15]. Using a mixed models approach, we examined medical and psychological predictors of post-disclosure distress during the year after receiving uninformative BRCA1/2 test results. We predicted that distress would be highest pretesting, decrease considerably in the month post-disclosure, decreasing slightly thereafter [13–15]. Predictors of heightened and sustained distress would include 1) variables suggestive of higher residual cancer risk (family history of ovarian cancer, 2+ family members with breast cancer, no previous risk-reducing surgery); 2) variables associated with heightened uncertainty (not having made a cancer risk-management decision, receiving a VUCS result, higher perceived likelihood of carrying a mutation at pretesting); 3) demographics previously associated with heightened distress (younger age); and 4) psychological variables (stronger primary and weaker secondary appraisals, perceived risk of carrying a deleterious mutation).

Summary This study examined barriers to mental health service use and their demographic, medical, and psychosocial correlates among hematopoietic stem cell transplant (HSCT) survivors. A sample of 253 HSCT survivors who were 1- to 3-years post-transplant completed measures of demographic, physical, psychological, and social characteristics as well as a newly modified measure of barriers to mental health service use. Only 50% of distressed HSCT survivors had received mental health services. An exploratory factor analysis of the barriers to mental health service use scale yielded four factors: Scheduling Barriers, Knowledge Barriers, Emotional Barriers, and Illness-related Barriers. Patients with higher social constraints (perceived problems discussing the illness experience with significant others) reported higher levels of all four types of barriers. General distress and transplant-related posttraumatic stress symptoms were positively associated with emotional, knowledge, and illness-related barriers to mental health service use, whereas physical and functional well-being were inversely associated with these barriers. Having more knowledge barriers and more emotional barriers predicted a lower likelihood of receiving mental health services, as did lower levels of education and general distress. Results suggest that a significant number of HSCT survivors may benefit from education about mental health services that is tailored to individual barriers.

Objective:People who undergo hematopoietic stem cell transplantation are highly dependent on their caregiver during their lengthy treatment and recovery. The effectiveness of their caregiver's social support can profoundly affect their day-to-day treatment experiences and, in turn, how they recall those experiences and are affected by them long after the treatment ends.Method:Our participants were 182 men and women who had undergone a transplant within the previous 9 months to 3 years. They completed baseline measures (including a measure of caregiver social support effectiveness) and then completed three writing assignments describing their transplant experiences. Linguistic analyses were conducted to investigate their use of words indicating negative emotions, cognitive processing (insight and causation), and practical problems with money and insurance. Theory-based hypotheses predicted associations between specific functional types of caregiver support (emotional, informational, and instrumental) and these word categories.Results:As hypothesized, the effectiveness of different functional types of support from a caregiver were uniquely associated with theoretically relevant categories of word use. Structural equation models indicated that more effective caregiver emotional support predicted lower use of negative emotion words; more effective caregiver informational support predicted lower use of causation words; and more effective caregiver instrumental support predicted lower use of words related to money and insurance.Significance of results:Our findings provide insights to guide research on the mechanisms through which caregiver support influences patient outcomes after stem cell transplantation. For instance, research suggests that these kinds of effects could have implications for survivors' current self-concept, psychosocial functioning, and meaning-making.

Osteoarthritis (OA) places a significant burden on worldwide public health because of the large and growing number of people affected by OA and its associated pain and disability. Pain coping skills training (PCST) is an evidence-based intervention targeting OA pain and disability. To reduce barriers that currently limit access to PCST, we developed an 8-week, automated, Internet-based PCST program called PainCOACH and evaluated its potential efficacy and acceptability in a small-scale, 2-arm randomized controlled feasibility trial. Participants were 113 men and women with clinically confirmed hip or knee OA and associated pain. They were randomized to a group completing PainCOACH or an assessment-only control group. Osteoarthritis pain, pain-related interference with functioning, pain-related anxiety, self-efficacy for pain management, and positive and negative affect were measured before intervention, midway through the intervention, and after intervention. Findings indicated high acceptability and adherence: 91% of participants randomized to complete PainCOACH finished all 8 modules over 8 to 10 weeks. Linear mixed models showed that, after treatment, women who received the PainCOACH intervention reported significantly lower pain than that in women in the control group (Cohen d = 0.33). Intervention effects could not be tested in men because of their low pain and small sample size. Additionally, both men and women demonstrated increases in self-efficacy from baseline to after intervention compared with the control group (d = 0.43). Smaller effects were observed for pain-related anxiety (d = 0.20), pain-related interference with functioning (d = 0.13), negative affect (d = 0.10), and positive affect (d = 0.24). Findings underscore the value of continuing to develop an automated Internet-based approach to disseminate this empirically supported intervention.

This study evaluated H. Reis and P. Shaver's (1988) interpersonal process model of intimacy in a sample of 98 women with breast cancer and their partners. Couples engaged in two discussions and rated self- and partner disclosure, perceived partner responsiveness, and intimacy experienced. A mediational model was tested in which partner responsiveness mediated the association between disclosure and intimacy. For patients, perceived responsiveness partially mediated the association between partner disclosure and intimacy, but self-disclosure was not significantly associated with responsiveness or intimacy. For partners, perceived responsiveness mediated the association between self-disclosure and perceived partner disclosure and intimacy. For breast cancer patients, partner disclosure predicted patient feelings of intimacy, because this type of disclosure was associated with greater feelings of acceptance, understanding, and caring. These findings may have implications for interventions to improve relationship closeness among couples coping with breast cancer.

Objective. To examine the prevalence and predictors of anxiety, depression, and posttraumatic stress disorder among mothers of children who underwent hematopoietic stem cell transplantation (HSCT). Methods. A total of 111 mothers of children who survived HSCT completed self-report measures of psychological functioning at the time of HSCT and self-report measures and a structured psychiatric interview 18 months after HSCT. Demographic data and medical data were also collected. Results. Approximately 20% of mothers had clinically significant distress reactions. When subthreshold posttraumatic stress disorder was included, nearly one third of mothers met the criterion for persistent distress. Mothers with 1 of the 4 psychiatric diagnoses reported a significantly lower quality of life, suggesting that the diagnoses had an impact on their general quality of life. Mothers who had 1 of the 4 diagnoses at 18 months were younger and had higher anxiety and depressive symptoms at the time of HSCT. Conclusions. A subset of mothers of children who survive HSCT may require psychological intervention. Mothers who are most at risk are younger and evidence anxiety and depressive symptoms at the time of transplantation.

Recent research indicates that subjective socioeconomic status (SES) – the perception of one's own SES compared with other people – is an important predictor of cancer-related health outcomes. Subjective SES may function as a psychosocial mechanism by which objective SES affects health, well-being, and, more broadly, quality of life among cancer survivors. This study tested whether the association between objective SES and indicators of quality of life was mediated by subjective SES in a sample of cancer survivors who had undergone hematopoietic stem cell transplantation.Hematopoietic stem cell transplantation survivors (N=268) completed measures of objective and subjective SES, along with four measures related to quality of life (depressive symptoms, health-related quality of life, symptoms of generalized distress, and posttraumatic stress disorder symptoms).Higher objective SES was associated with greater quality of life across all four measures. Subjective SES mediated the relationship between objective SES and depressive symptoms (total indirect effect b=-0.09, 95% confidence interval [CI] [-0.15, -0.05]), generalized distress (total indirect effect b=-0.08, 95% CI [-0.13, -0.04]), health-related quality of life (total indirect effect b=0.10, 95% CI [0.06, 0.17]), and posttraumatic stress disorder (total indirect effect b=-0.08, 95% CI [-0.14, -0.04]).Findings extend work on subjective SES to cancer and suggest that SES gradients in patient outcomes after cancer may reflect not only material resources but also psychosocial factors related to rank within social hierarchies. Further research may provide insights useful for reducing disparities in this population

We sought to understand smokers’ perceived likelihood of health problems from using cigarettes and four non-cigarette tobacco products (NCTPs: e-cigarettes, snus, dissolvable tobacco, and smokeless tobacco). A US national sample of 6,607 adult smokers completed an online survey in March 2013. Participants viewed e-cigarette use as less likely to cause lung cancer, oral cancer, or heart disease compared to smoking regular cigarettes (all p < .001). This finding was robust for all demographic groups. Participants viewed using NCTPs other than e-cigarettes as more likely to cause oral cancer than smoking cigarettes but less likely to cause lung cancer. The dramatic increase in e-cigarette use may be due in part to the belief that they are less risky to use than cigarettes, unlike the other NCTPs. Future research should examine trajectories in perceived likelihood of harm from e-cigarette use and whether they affect regular and electronic cigarette use.

Objective: Prior research supports the hypothesis that cancer survivors who help others face treatment experience a range of psychosocial and health-related benefits as a result of peer helping. This study investigates an expressive helping (EH) intervention designed to harness those benefits by targeting survivorship problems among cancer survivors treated with hematopoietic stem cell transplant. EH includes two components: (a) emotionally expressive writing (EW; writing one’s deepest thoughts and feelings about the transplant experience in a series of brief, structured writing sessions) followed by (b) peer helping (PH; helping other people prepare for transplant by sharing one’s own transplant experiences along with advice and encouragement through a written narrative). Method: EH was compared with neutral writing (NW), EW (without PH), and PH (without EW) in a 4-arm randomized controlled trial in which survivors completed baseline measures, 4 structured writing exercises (with instructions depending on randomization), and postintervention measures including validated measures of general psychological distress, physical symptoms, and health-related quality of life (HRQOL). Results: Among survivors with moderate–severe survivorship problems, EH reduced distress (compared with NW and PH; ps .05) and improved physical symptoms (compared with NW, PH, and EW; ps .002) and HRQOL (compared with NW; p .02). Conclusions: Peer helping through writing benefits transplant survivors with moderate–severe survivorship problems, but only if they have first completed expressive writing.

Although hematopoietic stem cell transplant (HSCT) patients may experience neurocognitive impairment, experiences of neurobehavioral problems (including apathy and disinhibition) are understudied. These experiences reflect behavioral signs and symptoms of neurological dysfunction that can potentially reduce health-related quality of life (HRQOL). Understanding them is important because they may be confused with other diagnoses, including depression, potentially leading to inappropriate treatments. The objectives of this preliminary cross-sectional study were to describe HSCT patients' neurobehavioral functioning pre-HSCT and post-HSCT and to examine relations with HRQOL.Patients (n = 42) 9 months to 3 years post-HSCT completed measures of neurobehavioral functioning to report apathy and disinhibition pre-HSCT (retrospectively) and post-HSCT (currently). Paired t-tests and McNemar tests were used to explore differences in the incidence of patient-reported neurobehavioral problems within and across time points. Regression analyses were conducted to examine relations between neurobehavioral functioning and physical and mental HRQOL.Elevated levels of apathy were reported by many patients post-HSCT (36%) and increased significantly from pre-HSCT to post-HSCT (p = 0.001). Hierarchical regression analysis indicated that higher levels of apathy were associated with reduced mental HRQOL (p0.05) even after controlling for depressed mood and fatigue.Findings from this preliminary study highlight the importance of investigating neurobehavioral problems, particularly apathy, in HSCT patients. Because apathy is often confused with other diagnoses and may worsen HRQOL, understanding the nature of these symptoms has implications for interventions. Further research is needed in this important area.

This study investigated whether loneliness and cognitive processing explain the influence of negative (social constraints) and positive (emotional support) relationship qualities on cancer survivors’ distress. Participants were 195 cancer survivors who had undergone hematopoietic stem cell transplantation. Path analysis supported the hypothesis that loneliness and cognitive processing would mediate the association between social constraints and distress. Only loneliness mediated the association between emotional support and distress – an indirect effect significant only when support came from family and friends rather than a partner. Findings suggest that addressing social constraints may enhance cancer survivors’ adjustment.

Hematopoietic stem cell transplantation is a demanding cancer treatment associated with enduring physical and psychological complications. Survivors' well-being may be further compromised by exposure to chronic stressors common to this population, including difficulties arising from costly medical care, changes in employment status, and health insurance coverage. Thus, we hypothesized that financial, employment, and insurance stressors (collectively referred to as economic survivorship stressors) would be associated with poorer health-related quality of life (HRQOL) among hematopoietic stem cell transplantation survivors.Survivors (n = 181; M = 640 days post-transplant) completed the measures of study variables through mailed questionnaires and telephone interviews. Hierarchical regression analyses were conducted to test the hypothesized associations between economic survivorship stressors and HRQOL, and to examine whether social and situational factors interact with survivors' stress perceptions to predict HRQOL.Greater financial and employment stress were associated with poorer functioning across multiple HRQOL domains, even after controlling for the effects of possible confounding sociodemographic and medical variables. Insurance stress was not associated with HRQOL. Some associations were moderated by situational factors including timing of the current financial crisis and portion of the transplant paid for by health insurance.Hematopoietic stem cell transplantation survivors can face serious economic challenges during recovery. Results suggest the value of viewing these challenges as chronic stressors capable of reducing survivors' mental and physical well-being. Identifying resources and skills that help survivors cope with these demands is an important goal for clinicians and researchers.

The relation between posttraumatic growth (PTG) and aspects of the social context, such as social support and social constraint, continues to be unclear in cancer survivors. Social cognitive processing theory is a useful framework for examining the effect of the social context on PTG. In theory, support interactions may either facilitate or hinder cognitive processing and thus lead to different PTG outcomes. The current study tested the hypothesis that emotional support and instrumental support would each explain a unique amount of the variance in PTG in distressed hematopoietic stem cell transplant (HSCT) survivors. Additionally, it was predicted that social constraint on cancer-related disclosure would be negatively associated with PTG.Forty-nine distressed HSCT survivors with a spouse or partner completed the posttraumatic growth inventory and measures of social support received from their spouse/partner and social constraint from people close to them as part of a larger clinical trial.Both emotional and instrumental social support were positively correlated with PTG, and social constraint on disclosure was not associated with PTG. Contrary to hypotheses, instrumental support was the only unique social contextual predictor of PTG.The results of this study highlight the importance of examining the effects of subtypes of social support on PTG separately. Findings are discussed in the context of the cognitive (i.e., processing of the traumatic event) versus non-cognitive (i.e., buffering stress) pathways between the social context and PTG. Future research directions are presented.

Patients make medical decisions in consultation with their partner, family, and friends. However, little is known about the ways in which these close others influence their decisions, particularly with respect to discrete decisions such as those related to medical treatments. This cross-sectional study investigated their influence on the surgical decisions of inflammatory bowel disease patients referred for surgery to remove their colon (N = 91). Guided by research on social control and classic research on power and influence in close relationships, we identified four types of close other decision influence: persuasion, assistance with understanding, indirect influence, and negative influence. Linear logistic and regression analyses showed that patients were more likely to have surgery when their close other used persuasion, and they reported lower decisional conflict when their close other helped them understand the decision. Patients were less likely to have surgery and reported greater decisional conflict when their close other used negative influence tactics. Findings demonstrate the importance of considering social context when investigating patient decision making.