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Individuals with Mast Cell Activation Syndrome (MCAS), a rare chronic disease, experience unpredictable physical symptoms and diagnostic challenges resulting in poor emotional states. The prevalence and correlates of depressive symptoms were examined among 125 participants who completed the CES-D and relevant instruments. The majority reported a clinically-significant level of depression which was especially common among younger participants and those who reported greater loneliness or more disease-specific stressors. Greater magnitude of depressive symptoms was associated with greater illness intrusiveness, less social support, and lower optimism. Results highlight the value of interventions targeting loneliness and stressors unique to this population.

BACKGROUND : Mast cell disorders (MCDs) are rare, chronic, debilitating diseases with a varied and complex clinical trajectory that creates challenges to physical and mental health. Reliable estimates of the prevalence of anxiety in this population are largely nonexistent. Furthermore, very little is known about how sufferers’ coping efforts affect their emotions and adjustment. Because a person with a MCD cannot eliminate the stressors associated with their chronic illness, it is important to understand what helps them adjust. OBJECTIVE: To document the magnitude of anxiety in MCD sufferers, their physical symptoms, levels of social support, and ways of coping with the stress of the disease, and examine the extent to which symptoms, social support, and coping are associated with anxiety. METHODS: Individuals with a mast cell disorder completed an anonymous Internet-based survey (N=157). RESULTS: More than half of individuals with mast cell disorders in this study found their illness to be very stressful and nearly a third were experiencing moderate levels of anxiety. Participants who had more frequent and severe physical symptoms reported higher levels of anxiety. Those who reported coping with their problems by using planning strategies and those who felt they had more social support available to them were less anxious; those who used more avoidant strategies to cope were more anxious. CONCLUSION: Based on the current results, and intervention work in other chronic illness groups, it seems likely that coping behaviors are a fruitful target of intervention for patients with a MCD to reduce their emotional distress.

Objective: To examine whether pregnancy-specific coping predicts changes in emotional distress from mid- to late pregnancy.Background: There is a need to identify ways of coping that reduce...

Objective To examine the magnitude and predictors of emotional reactions to an infertility diagnosis in two groups of women: those with diminished ovarian reserve (DOR), and those clinically diagnosed with an anatomical cause of infertility (ACI). Design Cross-sectional study. Setting Academic and private fertility clinics. Patient(s) Women diagnosed with DOR (n = 51) and women diagnosed with ACI (n = 51). Intervention(s) Not applicable. Main Outcome Measure(s) Fertility Problem Inventory (infertility distress), Rosenberg Self-Esteem Scale, Health Orientation Scale (emotional reactions to receiving a diagnosis). Result(s) Women with DOR had statistically significantly higher infertility distress scores than women with ACI and higher scores on subscales assessing distress from social concerns, sexual concerns, and a need for parenthood. In both groups, higher self-esteem was associated with lower infertility distress. Hierarchical multiple regression analyses revealed that for women with DOR and those with ACI lower infertility distress but not self-esteem predicted a more positive emotional reaction toward receiving a fertility diagnosis. Conclusion(s) Women diagnosed with DOR have greater infertility distress but similar self-esteem and emotional reactions to their diagnosis compared with women who have an anatomical cause of infertility. These results suggest that for both groups distress surrounding infertility itself may influence the way women respond to learning the cause of their infertility.

OBJECTIVE: To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT). METHODS: The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new PGT Decisional Uncertainty instrument assesses Clarity about test benefits/disadvantages (5 items) and Certainty of having adequate information/support to make a good decision (7 items). Scales ranged from 0 to 4. Psychometrics (central tendencies, internal consistency reliability, and discriminant validity) were evaluated. Stratified analysis by decision stage was conducted. All participants had considered or used PGT in the previous 6 months. RESULTS: N = 106 females (mean age 36.5 ± 4.8 years; 16% non-Caucasian; 9% Hispanic) across 16 US states completed an online anonymous questionnaire. On average, respondents reported minimal distress (mean 0.96), high clarity (mean 3.26), and high certainty (mean 3.06), particularly those who had already decided compared to undecided women (P ≤ .02). Instruments had excellent internal consistency (Cronbach's α's 0.92-0.94) and displayed sufficient inter-individual variability (SD's 0.75-0.89). Correlations confirmed expected patterns of association between instruments (P's < .01), indicating discriminant validity. CONCLUSION: We document initial reliability and validity of new instruments to measure emotional distress and uncertainty in female patients who have recently considered PGT for single-gene or chromosomal disorders.

The process of deciding whether to pursue preimplantation genetic testing (PGT) of an embryo is highly stressful for individuals and couples and has adverse emotional consequences (e.g. distress and uncertainty). PGT influences patients’ lives in both positive and negative ways and is experienced at an individual level, as a dyadic unit, as a family member and as part of the society. Here, we argue that providing a conceptual framework with which to understand the `experience of decision making’ about PGT for monogenic disease (PGT-M) testing specifically, as well as the factors contributing to `decisional distress’ and `uncertainty’ that patients endure as a result—apart from what decision they make—is crucial to optimizing patient counseling, satisfaction and outcomes in the field of ART. Derived from psychological theory, the framework proposed here identifies three categories of contributing factors to decisional distress and uncertainty in considering PGT-M; namely, ‘intraindividual’, ‘interpersonal’ and ‘situational’ factors. We reviewed evidence from the PGT literature to inform our framework. Well-accepted theories of stress and health decision making were also reviewed for their relevance to PGT-M decision making, focusing on potential distress and uncertainty. Our novel conceptual framework can be used to inform clinical practice, to advance research and to aid the development of interventions for individuals and couples who are deciding whether or not to use PGT-M. Alleviating emotional distress and uncertainty can improve patients’ well-being during their reproductive journey.

Rationale Couples worldwide are seeking treatment for infertility in growing numbers. Both infertility and its treatment are stressful experiences that generate considerable emotional distress. There is speculation that women's distress is associated with poorer likelihood of pregnancy via assisted reproductive technology (ART) and plausible psychobiological mechanisms bolster this association, although prior reviews of existing evidence find little support. A rigorous, comprehensive, and up to date analysis of research on the association of women's distress with ART outcomes is imperative. Objective We systematically searched for and analyzed evidence regarding the association of women's distress before and during treatment with the likelihood of treatment success via ART. Method Meta-analysis using a random-effects model was conducted on prospective studies (k = 20) that compared levels of anxiety, depressive symptoms, or perceived stress before or during ART treatment in women who achieved successful pregnancy outcomes versus those who did not (total N = 4308). Results Anxiety, depressive symptoms, or perceived stress pre-treatment, and anxiety or depressive symptoms during treatment, were not associated with less favorable ART outcomes. Prior treatment experience, age, and duration of infertility were not significant moderators of these associations. No eligible studies examined perceived stress during treatment. Conclusion Results cast doubt on the belief that distress impedes the success of infertility treatment, offering hope and optimism to the many women who feel emotionally responsible for the outcome of ART and informing the evidence-based practices of their health-care providers. We also identify specific areas and research methods needed to corroborate and extend study conclusions, including study of factors that elevate or attenuate distress in women undergoing infertility treatment.

Psychometrically sound self-report measures are important tools to advance research on health behaviors in pregnancy. The Prenatal Health Behavior Scale (PHBS) has been used in prior studies to quantify health behaviors and examine their associations with relevant variables, but its psychometric properties have not been carefully investigated.In a sample of low-risk women, we examined the factor structure, reliability, and validity of the PHBS at mid- (N = 138) and late (N = 102) pregnancy.In confirmatory factor analysis, items on the PHBS loaded onto a single reliable factor, but separating health-promoting and health-impairing behavior into two factors had better model fit. The scales defined by these two factors had good internal consistency in mid- and late pregnancy, were only moderately correlated, and were predicted by somewhat different sets of sociodemographic and psychological variables. Pregnancy-specific stress was a robust predictor of health-promoting and health-impairing behavior across time.Results bolster confidence in the reliability and validity of the PHBS and its appropriateness as a self-report tool for investigation of health behaviors among pregnant women. This study is one of the first investigations to examine patterns and predictors of health behavior practices at two time periods of pregnancy.

Rationale Favorable relationships with health care providers predict greater patient satisfaction and adherence to provider recommendations. However, the specific components of patient-provider relationships that account for these benefits have not been identified. The potential benefits of strong patient-provider relationships in pregnancy may be especially important, as care providers have frequent, intimate interactions with pregnant women that can affect their emotions and behaviors. In turn, prenatal emotions and health behaviors have potent effects on birth outcomes. Objective This study investigated whether pregnant women's relationships with their midwives predicted better self-care. Specific components of the patient-provider relationship (communication, integration, collaboration, and empowerment) were examined. We also investigated a mechanism through which these relationship components may be associated with salutary health behaviors: by alleviating women's anxiety. Methods In total, 139 low-risk patients of a university-affiliated midwifery practice in the northeastern United States completed well-validated measures assessing their relationship with midwives, state anxiety, and prenatal health behaviors in late pregnancy; state anxiety was also assessed in mid-pregnancy. Results Women's perceptions of better communication, collaboration, and empowerment from their midwives were associated with more frequent salutary health behavior practices in late pregnancy. Controlling for mid-pregnancy anxiety, lower anxiety in late pregnancy mediated associations of communication and collaboration with health behavior practices, indicating that these associations were attributable to reductions in anxiety from mid- to late pregnancy. Conclusion Results substantiate that benefits of patient-provider relationships in pregnancy may extend beyond providing medical expertise. Some aspects of patient-provider relationships may offer direct benefits to pregnant women in promoting better health practices; other aspects of these relationships may indirectly contribute to better health practices by alleviating negative emotions. The benefits of strong midwife relationships may derive from the reassurance, comfort, and warmth these relationships offer, as well as the information and education that midwives provide to their patients.

Mast cell disorders are rare, chronic diseases involving unpredictable physical symptoms ranging in severity, duration, and frequency. Almost two-thirds of participants with these disorders ( n = 180) experienced clinically meaningful depressive symptoms. Depressed mood was associated with somatic symptomatology, poorer quality of life, lower resilience, and indirectly with ways of coping. Newly developed measures for this population performed psychometrically well. There was no gender difference in depression but women reported greater use of several ways of coping, greater disease-related distress, poorer quality of life, and more symptoms. Results underscore the need for further research and development of effective psychosocial interventions for this population.