Barriers to accessing care for cardiometabolic disorders in Malawi: partners as a source of resilience for people living with HIV.

BACKGROUND: People living with HIV (PLWH) are at increased risk of cardiometabolic disorders (CMD). Adequate access to care for both HIV and CMD is crucial to improving health outcomes; however, there is limited research that have examined couples' experiences accessing such care in resource-constrained settings. We aimed to identify barriers to accessing CMD care among PLWH in Malawi and the role of partners in mitigating these barriers. METHODS: We conducted a qualitative investigation of barriers to CMD care among 25 couples in Malawi. Couples were eligible if at least one partner was living with HIV and had hypertension or diabetes (i.e., the index patient). Index patients were recruited from HIV care clinics in the Zomba district, and their partners were enrolled thereafter. Interviews were conducted separately with both partners to determine barriers to CMD care access and how partners were involved in care. RESULTS: Participants framed their experiences with CMD care by making comparisons to HIV treatment, which was free and consistently available. The main barriers to accessing CMD care included shortage of medications, cost of tests and treatments, high cost of transportation to health facilities, lengthy wait times at health facilities, faulty or unavailable medical equipment and supplies, inadequate monitoring of patients' health conditions, some cultural beliefs about causes of illness, use of herbal therapies as an alternative to prescribed medicine, and inadequate knowledge about CMD treatments. Partners provided support through decision-making on accessing medical care, assisting partners in navigating the healthcare system, and providing financial assistance with transportation and treatment expenses. Partners also helped manage care for CMD, including communicating health information to their partners, providing appointment reminders, supporting medication adherence, and supporting recommended lifestyle behaviors. CONCLUSIONS: Couples identified many barriers to CMD care access, which were perceived as greater challenges than HIV care. Partners provided critical forms of support in navigating these barriers. With the rise of CMD among PLWH, improving access to CMD care should be prioritized, using lessons learned from HIV and integrated care approaches. Partner involvement in CMD care may help mitigate most barriers to CMD care.

"High blood pressure comes from thinking too much": Understandings of illness among couples living with cardiometabolic disorders and HIV in Malawi.

Cardiometabolic disorders (CMD) such as hypertension and diabetes are increasingly prevalent in sub-Saharan Africa, placing people living with HIV at risk for cardiovascular disease and threatening the success of HIV care. Spouses are often the primary caregivers for people living with CMD, and understanding patients' and partners' conceptions of CMD could inform care. We conducted semi-structured interviews with 25 couples having a partner living with HIV and either hypertension or diabetes. Couples were recruited from HIV clinics in Malawi and were interviewed on beliefs around symptoms, causation, prevention, and treatment for CMD. Data were analyzed at the individual and dyadic levels using framework analysis and Kleinman's theory of explanatory models as a lens. On average, participants were 51 years old and married for 21 years. Approximately 57%, 14%, and 80% had hypertension, diabetes, and HIV. Couples endorsed a combination of biomedical explanatory models (beliefs around physical and mental health) and traditional explanatory models (beliefs around religion and natural remedies), although tended to emphasize the biomedical model. Half of couples believed stress was the main cause of hypertension. For diabetes, diet was believed to be a common cause. In terms of prevention, dietary changes and physical activity were most frequently mentioned. For disease management, medication adherence and diet modifications were emphasized, with some couples also supporting herbal remedies, stress reduction, and faith in God as strategies. Participants were generally more concerned about CMD than HIV due to poor access to CMD medications and beliefs that CMD could lead to sudden death. Within couples, partners often held many of the same beliefs but diverged around which etiological or preventive factors were most important (e.g., stress versus diet) and the best diet for CMD. Health education programs should involve primary partners to build knowledge of CMD and address overlap with HIV, and reinforce accurate information on lifestyle factors for the prevention and treatment of CMD.

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

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.

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

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.

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

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.

Values clarification and parental decision making about newborn genomic sequencing.

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).

Returning negative results to individuals in a genomic screening program: lessons learned.

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.

Evaluating parents' decisions about next-generation sequencing for their child in the NC NEXUS (North Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized controlled trial protocol.

BACKGROUND: Using next-generation sequencing (NGS) in newborn screening (NBS) could expand the number of genetic conditions detected pre-symptomatically, simultaneously challenging current precedents, raising ethical concerns, and extending the role of parental decision-making in NBS. The NC NEXUS (Newborn Exome Sequencing for Universal Screening) study seeks to assess the technical possibilities and limitations of NGS-NBS, devise and evaluate a framework to convey various types of genetic information, and develop best practices for incorporating NGS-NBS into clinical care. The study is enrolling both a healthy cohort and a cohort diagnosed with known disorders identified through recent routine NBS. It uses a novel age-based metric to categorize a priori the large amount of data generated by NGS-NBS and interactive online decision aids to guide parental decision-making. Primary outcomes include: (1) assessment of NGS-NBS sensitivity, (2) decision regret, and (3) parental decision-making about NGS-NBS, and, for parents randomized to have the option of requesting them, additional findings (diagnosed and healthy cohorts). Secondary outcomes assess parents' reactions to the study and to decision-making. METHODS/DESIGN: Participants are parents and children in a well-child cohort recruited from a prenatal clinic and a diagnosed cohort recruited from pediatric clinics that treat children with disorders diagnosed through traditional NBS (goal of 200 children in each cohort). In phase 1, all parent participants use an online decision aid to decide whether to accept NGS-NBS for their child and provide consent for NGS-NBS. In phase 2, parents who consent to NGS-NBS are randomized to a decision arm or control arm (2:1 allocation) and learn their child's NGS-NBS results, which include conditions from standard (non-NGS) NBS plus other highly actionable childhood-onset conditions. Parents in the decision arm use a second decision aid to make decisions about additional results from their child's sequencing. In phase 3, decision arm participants learn additional results they have requested. Online questionnaires are administered at up to five time points. DISCUSSION: NC NEXUS will use a rigorous interdisciplinary approach designed to collect rich data to inform policy, practice, and future research. TRIAL REGISTRATION: clinicaltrials.gov, NCT02826694 . Registered on 11 July, 2016.

Availability of smoking prevention and cessation services for childhood cancer survivors.

OBJECTIVE: To characterize the smoking-related services available to childhood cancer survivors and describe organizational characteristics that were related to institutions' capacity to provide smoking services. METHODS: Institutions affiliated with the Children's Oncology Group were surveyed from 2003 to 2004. RESULTS: Of the 132 responding institutions, 85% assessed the smoking status of their cancer survivors intermittingly, but only 3% assessed smoking status at every visit, as recommended by the PHS guidelines. A minority of sites offered either smoking prevention (39%) or cessation (25%) services; 58% of sites had a mechanism in place to refer survivors for cessation services. In multivariate analyses, the most parsimonious model predicting capacity for smoking service delivery included barriers, respondents' attitudes, complexity, and institutional stability. CONCLUSIONS: These data highlight an important need to improve the availability of smoking services for childhood cancer survivors. Additionally, these findings will inform the development of future interventions that are sensitive to barriers and facilitators to providing prevention services.

A process evaluation of a telephone-based peer-delivered smoking cessation intervention for adult survivors of childhood cancer: the partnership for health study.

OBJECTIVE: We report on the process evaluation of an efficacious national smoking cessation intervention for adult survivors of childhood cancer. We examine associations between intervention implementation characteristics and study outcomes, as well as participant characteristics related to level of involvement in the intervention. METHODS: The study was conducted at the Dana-Farber Cancer Institute in Boston, Massachusetts, from 1999-2001. Participants (n = 398) were randomly assigned to receive a proactive telephone-based peer counseling intervention. They received up to 6 counseling calls, individually tailored and survivor-targeted materials, and nicotine replacement therapy (NRT) patches if they were prepared to quit smoking. RESULTS: Forty-two percent of survivors participated in the maximum number of calls (5-6), and 29% of participants requested and received NRT. Total counseling time was an average of 51 min. Quit status at follow-up was related to intervention dose, and participants who received NRT were significantly more likely to make a 24-h quit attempt. Demographic variables (females, White), higher daily smoking rate, poorer perceived health and moderate perceived risk of smoking were significantly related to greater intervention involvement. CONCLUSIONS: A brief peer-delivered, telephone counseling intervention is an effective way to intervene with adult survivors of childhood cancer who are smoking. Findings from the process evaluation data (call length and number, frequency, and spacing) will inform future telephone counseling cessation programs.

Understanding health behavior change among couples: an interdependence and communal coping approach.

Marriage is a ubiquitous social status that consistently is linked to health. Despite this, there has been very little theory development or related research on the extent to which couple members are jointly motivated to and actively engage in health-enhancing behaviors. In this paper we propose an integrative model, based on interdependence theory and communal coping perspectives, that explicitly considers dyadic processes as determinants of couple behavior. Our integrated model applies these constructs to consider how couple dynamics might influence adoption of risk-reducing health habits. Accordingly, we suggest that the couple's interdependence can transform motivation from doing what is in the best interest of the self (person-centered), to doing even selfless actions that are best for the continuation of the relationship (relationship-centered). In turn, this transformation can lead to enhanced motivation for the couple to cope communally or act cooperatively in adopting health-enhancing behavior change. Implications for research related to couples and health behavior change are also highlighted.

Peer-delivered smoking counseling for childhood cancer survivors increases rate of cessation: the partnership for health study.

PURPOSE: Cancer survivors smoke at rates that are only slightly lower than the general population. This article reports on the final outcomes of Partnership for Health, a smoking cessation intervention for smokers in the Childhood Cancer Survivors Study (CCSS). METHODS: This study is a randomized control trial with follow-up at 8 and 12 months that involved smokers (n = 796) enrolled onto the CCSS cohort. Participants were randomly assigned to either a self-help or a peer-counseling program that included up to six telephone calls from a trained childhood cancer survivor, tailored and targeted materials, and free nicotine replacement therapy. The intervention was delivered by telephone and postal service mail. RESULTS: The quit rate was significantly higher in the counseling group compared with the self-help group at both the 8-month (16.8% v 8.5%; P < .01) and 12-month follow-ups (15% v 9%; P < or = .01). Controlling for baseline self-efficacy and readiness to change, the intervention group was twice as likely to quit smoking, compared with the self-help group. Smoking cessation rate increased with an increase in the number of counseling calls. The cost of delivering the intervention was approximately 300 dollars per participant. The incremental cost-effectiveness of the intervention compared with controls was 5,371 dollars per additional quit. CONCLUSION: Interventions to prevent future illnesses are of critical importance to childhood cancer survivors. The Partnership for Health intervention resulted in a doubling of smoking cessation quit rates. Because of the seriousness of smoking among childhood cancer survivors, this intervention model may be appropriate as a multicomponent treatment program for survivors who smoke.

HIV risk and protection among gay male couples: the role of gay community integration.

This study examined the association between different types of integration in the gay community and HIV risk among gay male couples. Previous research linking gay community integration and involvement among couples to HIV risk has been equivocal. Each partner in 59 gay couples completed a separate anonymous questionnaire that assessed two types of social involvement in the gay community, assimilation into the gay community, and sexual HIV risk behaviors. We used the actor-partner interdependence analysis approach, which maintains the couple as the unit of analysis while allowing for tests of within-couple, between-couple, actor, and partner effects. Analyses revealed that, controlling for symptoms of alcohol problems, going to gay bars and clubs independently predicted more HIV risk.

Antecedents and reactions to health-related social control.

A model of the antecedents and reactions to health-related social control is proposed. This model suggests health behavior characteristics, including type, frequency, and severity of consequences, are social control antecedents. Social control is then thought to elicit better health behavior and emotions. Attributions to explain social control are proposed to effect emotional reactions and behavior. Undergraduates read hypothetical scenarios to test the proposed model. Study 1 found that health-compromising behaviors and behaviors with more severe consequences elicited more social control. Study 2 found that, compared to negative tactics, positive social control tactics elicited more behavior change, and compared to social/appearance concerns, attributions to health elicited positive emotions. Attributions did not moderate the impact of social control on emotions or behavior.

Multiple risk behaviors among smokers in the childhood cancer survivors study cohort.

The literature on health behaviors of young adult cancer survivors is very limited, and thus little is known about preventable risk factors in this population. This paper describes the prevalence of five behavioral risk factors among 541 young adult survivors of childhood cancers from the CCSS cohort who were identified as smokers and enrolled in a randomized controlled trial of a smoking cessation intervention. The relationship between presence of multiple risk factors and a number of smoking-related factors was examined. About 31% of the sample engaged in zero or one health-risk behavior in addition to smoking; 63% engaged in 2 or 3, and 6% engaged in 4 or 5. There were positive linear relationships between number of risk factors and smoking rate and nicotine dependence. Number of risk factors was not associated with self-efficacy for quitting, but was related to readiness to quit. This study demonstrated that childhood cancer survivors who smoke have a number of other risk factors for the development of preventable disease and the presence of these risks was associated with factors that decrease the likelihood of quitting smoking. Attention to other health behaviors may be an important strategy for helping smokers quit. In particular, helping childhood cancer survivors who smoke to reduce other risk behaviors might also encourage them to quit smoking.

Smoking among participants in the childhood cancer survivors cohort: the Partnership for Health Study.

PURPOSE: This article describes baseline data collection and the intervention design of Partnership for Health, a smoking cessation intervention for smokers in the Childhood Cancer Survivors Study. The purpose of this article is to evaluate demographic, psychosocial, and cancer-related factors that are associated with smoking behavior and mediators of smoking cessation. PATIENTS AND METHODS: This study includes 796 smokers from the Childhood Cancer Survivors Study database who were diagnosed with cancer before the age of 21, had survived at least 5 years, and were at least 18 years of age at the time of the baseline survey. Correlates of smoking behaviors included smoking rate, number of recent quit attempts, and nicotine dependence; two key mediators of smoking cessation, readiness to quit smoking and self-efficacy, were also assessed. RESULTS: Participants smoked, on average, 14 cigarettes/day; 53.2% were nicotine dependent, and 58% had made at least one quit attempt in the past year. Smoking behaviors were primarily associated with demographic variables; mediators of cessation were primarily associated with age at cancer diagnosis and perceived vulnerability to smoking-related illnesses. Severity of psychologic symptoms was associated with increased smoking rate, high nicotine dependence, and low self-efficacy. Support for quitting was related to smoking rate, number of quit attempts, readiness to quit smoking, and self-efficacy. CONCLUSION: These findings indicate that many cancer survivors who smoke are receptive to smoking cessation interventions. Factors related to mediators of smoking cessation might be particularly good targets for intervention.