Reproductive issues in adults with cystic fibrosis: Implications for genetic counseling

This article reviews reproductive issues faced by the growing number of individuals with cystic fibrosis (CF) who reach adulthood. Approximately 97–98% of males with CF are infertile and they may have an increased risk for genitourinary anomalies. Females with CF may experience delayed puberty, irregular menstrual cycles, and decreased fertility. Women with CF who have good clinical scores, good nutritional status, and normal lung volumes with mild to moderate airway obstruction, have a better chance for successful pregnancies. The role of the genetic counselor in counseling adults with CF is discussed and resources for CF adults are provided.     

Newborn screening for cystic fibrosis: Educational implications

We examined the educational implications of newborn screening for cystic fibrosis (CF) as performed by combining the measurement of immunoreactive trypsin with analysis for the most common CF mutation, F508. Four out of 77 (5%) of maternity staff from 11 hospitals in rural New South Wales, Australia had learned about the salient features of the screening protocol from a pamphlet distributed from a central laboratory. In comparison, a didactic lesson resulted in a significantly greater (p<0.00006) number of maternity staff learning about the salient features of the screening protocol. Most maternity staff expanded their explanation to parents of newborn babies because of the didactic lesson.     

Coping strategies and quality of life in women with advanced breast cancer and their family caregivers

Abstract

This study examines the effects of personal resources of both heart patients and their close social partners on patients' coping and quality of life. Generalized personal resources (self-efficacy beliefs, dispositional optimism, self-regulation competence) and outcomes were assessed by questionnaire 1–3 days before surgery (n = 122) and again six months later (n= 50). Outcome variables were coping styles, social resources (social support and social integration), emotional states, and further measures of quality of life. Patients' personal resources were dominant in the prediction of most of the outcomes. Partners' resources were uniquely related to social support, social integration, and quality of life as perceived by the patients. Further, partners' personality resources predicted changes in patients' loneliness and energy levels during the six-month interval.     

Coping strategies,depressive symptoms and quality of life in hypertensive patients: Mediational and prospective relations

This study examined whether depressive symptoms mediated the association between coping strategies and quality of life (QoL) in a sample of hypertensive patients, and the prospective contribution of depressive symptoms and coping strategies in the prediction of their QoL. One hundred and fifty patients (50% males and 50% females) with a diagnosis of essential hypertension were recruited from a general hospital. Symptoms of depression, coping and QoL measures (global score and dimensions) were collected at baseline. Sixty-three participants completed the QoL questionnaire again one year later (T2). The results indicated that the relations between emotion coping and QoL (global score, satisfaction and social support) were totally mediated by depressive symptoms. The association between emotion coping and well-being was, however, partially mediated by depressive symptoms. Furthermore, only baseline instrumental coping strategies predicted higher levels of QoL (global score, well-being and social support) at T2. Neither emotion coping nor depressive symptoms were significantly associated with prospective QoL. These findings suggest that depressive symptoms may be a mechanism linking the manner in which patients cope with their hypertension and their QoL. They also emphasise the adaptive role played by instrumental coping responses in the management of hypertension in the long term.     

Coping and emotional distress in a sample of Swedish unemployed.

The study investigated the associations between coping and symptoms of emotional distress within a sample of 166 unemployed men and women (mean age 40 +/- 10 years, range 22 to 63 years, 52% males). All variables were measured with a questionnaire comprising sociodemographic background, length of unemployment, financial strain, coping style ("Ways of Coping Checklist"), and emotional distress (Hopkins Symptom Check List-25). Emotional distress was positively related to financial strain and more common among younger subjects, divorced subjects and those with foreign background, but less frequent among subjects who had been unemployed for more than three years. After controlling for age, gender, education, foreign background, length of unemployment and financial strain, hierarchical regression analyses showed that emotion-focused coping, i.e. self-blame and wishful thinking, was positively related to emotional distress. Problem-focused coping and cognitive restructuring were negatively associated with emotional distress. Younger subjects and divorced subjects made frequent use of both emotion-focused and problem-focused coping. Female subject and subjects with mandatory school made frequent use of emotion focused coping, if exposed to high financial strain. Problem-focused coping was less frequent among subjects with a low education coupled with low financial strain. Cognitive restructuring was less common among subjects who had been unemployed for more than three years. Younger subjects who were also divorced made less use of both problem-focused coping and cognitive restructuring. The results confirm that coping style has importance for the mental health of the unemployed, and indicate a differential use of coping strategies among subjects with different sociodemographic backgrounds and different levels of financial strain.     

The role of coping in the relationship between stressful life events and quality of life in persons with cancer

Objective: Stressful life events (SLEs) impact the quality of life (QOL) of cancer patients. This study investigated the mediation of the relationship between SLEs and QOL (Model 1: Emotional-EQOL and Model 2: Physical/Functional-PFQOL by three types of coping: Action/Planning, Support/Advise-Seeking, and Disengagement/Denial). Design and Main Measures: 662 persons with cancer completed a Stressful Life Events Checklist, the Brief COPE scale, the FACT Emotional, Physical, and Functional Scales, and the Physical Impact Scale of the Sickness Impact Profile. Results: SLEs were positively associated with Action/Planning (Model 1: B?=?0.195, 95% CI = [0.089, 0.304]; Model 2: B?=?0.192, 95% CI = [0.086, 0.289]) and Disengagement/Denial (Model 1: B?=?0.394, 95% CI = [0.281, 0.513]; Model 2: B = .392, 95% CI = [0.285, 0.508]) but not Support/Advice-Seeking; however, only Disengagement/Denial was related to Emotional-QOL (Model 1: B = ?0.659, 95% CI = [?0.848, ?0.498]) and Physical/Functional-QOL (Model 2: B = ?1.460, 95% CI = [?1.856, ?1.069]). Thus, only Disengagement/Denial mediated the relationship between SLEs and QOL. Conclusions: The results indicated that SLEs represent a class of events for which there may be only one dominant coping response, disengagement. SLEs may not be controllable or predictable and reduce capacity for active coping with serious illness. However, SLEs may be detected at any point in the cancer trajectory so that supportive services might be provided.     

A one year study of coping,social support and quality of life in parkinson's disease

Abstract

The role of coping and social support in the quality of life for Parkinson's Disease (PD) patients is not well understood. Most studies are cross-sectional and concentrate on depression as an outcome measure. The aim of the present study was to explore the role of coping and social support in quality of life for patients with PD. Self-report measures were completed by 105 sufferers of PD; 75 completed the same questionnaire a year later. Patients had the most problems with social function, followed by problems with mobility control and psychological autonomy and communication. After controlling for age, gender and illness duration, the number of PD symptoms predicted mobility control, social functioning and psychological function. Passive coping explained additional variance in most functional domains with more passive coping being related to increased problems. The quality of life was highly stable over the course of the year. Active coping was related to superior psychological functioning one year later. In fact, this was the only coping and social support variable related to functioning after one year, when controlling for previous functions. The results are discussed in terms of the importance of symptom management in PD.     

Correlates of general quality of life are different in patients with primary insomnia as compared to patients with insomnia and psychiatric comorbidity

Chronic insomnia is known to have a negative influence on quality of life (QOL). To date, most studies on chronic insomnia have focused on health-related aspects of QOL. General QOL, which is a different construct, has not been studied in detail. Moreover, it is not known which factors are associated with general QOL in insomnia, and whether the presence of mental disorders, a condition known as comorbid insomnia, affects these variables. The present study focused on identifying sleep and psychosocial variables that might be associated with general QOL in primary and comorbid insomnia. Personality traits, coping variables, anxiety and depressive symptoms, fatigue and subjective sleep variables were assessed in 218 consecutive well-characterized patients with primary and comorbid insomnia, referred to a third line centre for sleep medicine. In primary insomnia, higher extraversion and lower discrepancies in social support were associated with higher QOL. Surprisingly, insomnia severity was not significantly associated with QOL in this group. However, lower fatigue, which can be seen as an important daytime consequence of insomnia was correlated with higher QOL in patients with primary insomnia. In both insomnia groups, low anxiety and depressive symptoms and low fatigue were associated with higher general QOL. In contrast with the primary insomnia group, lower insomnia severity was correlated with higher QOL in patients with comorbid insomnia. These results stress the importance of assessing and treating daytime fatigue in insomnia. In primary insomnia, improving social support might be an important treatment goal. Furthermore, this study supports the concept that treatment of insomnia should not be neglected in patients with comorbid insomnia. Indeed, both insomnia and indices of psychiatric disease are strongly associated with general QOL in this condition.     

Self-determination in relation to quality of life in homeless young adults: Direct and indirect effects through psychological distress and social support

The self-determination theory emphasizes the importance of satisfaction with autonomy, competence, and relatedness for a person’s psychological growth and well-being. This study examines associations between autonomy, competence, and relatedness with quality of life in homeless young adults; and whether possible associations are mediated by psychological distress and perceived social support. By means of face-to-face interviews, 255 homeless young adults who receive care from 10 Dutch shelter facilities for homeless young adults have been interviewed (M age = 20, 77% male, 51% Dutch Nationality) shortly after entering the facility. Autonomy, competence, and relatedness are all associated with quality of life, with competence as the highest correlate. Psychological distress mediates both competence and autonomy, and social support mediates competence as well as relatedness. These findings emphasize the importance of intervention programs for homeless young adults, focusing on the enhancement of self-determination, especially competence, to improve their quality of life.     

Follow-up effects of social comparison information on the quality of life of cancer patients: The moderating role of social comparison orientation

Objective: To examine how social comparison orientation (SCO) moderates the effects of three types of social comparison information on the global quality of life of cancer patients 2 weeks and 3 months later. Design: Cancer patients (n?=?226) were provided with social comparison information just prior to undergoing radiation therapy, using audiotapes. Each participant was confronted with one of three tapes: (1) focusing on procedural aspects, (2) focusing on emotional reactions and (3) focusing on coping strategies. Main outcome measures: Quality of life as measured with the Cantril self-anchoring scale [Cantril, H. (1965). The pattern of human concerns. New Brunswick, NJ: Rutgers University Press]. Results: With increasing SCO, a lower quality of life was reported after listening to the emotion tape, while a higher quality of life was reported after listening to the coping tape. These effects were found 2 weeks as well as 3 months after the radiation therapy had ended. Conclusion: Social comparison information may have longitudinal effects on quality of life, but these effects are to an important extent dependent on the nature of the information and individual differences in SCO.     

Emotional competence and quality of life of children with asthma: The mediating effect of coping strategies

This study explored the mediating effect of coping strategies on the relationship between emotional competence (EC) and quality of life (QOL) among children with asthma. Participants were 87 children (M age?=?11.72, SD?=?2.58) with controlled and partially controlled asthma, undergoing everyday treatment. They filled in questionnaires assessing EC, coping strategies and QOL. Results showed that the association between some ECs and the QOL of children with asthma was fully mediated by two maladaptive cognitive coping strategies. Among children with asthma, a greater ability to differentiate their emotions, a reduced attention to bodily signals of emotions and a reduced analysis of their current emotional state were related to decreased engagement in two coping strategies (‘Ignoring Asthma’ and ‘Worrying about Asthma’), which in turn increased their QOL. These findings show that EC has an indirect effect on QOL through very specific coping strategies. They also emphasise the importance of screening EC in children with asthma and the importance of developing and using multidisciplinary interventions for them.     

Quality of life and mental health among women with ovarian cancer: examining the role of emotional and instrumental social support seeking

The purpose of the present study was to examine the role of emotional and instrumental social support seeking in the quality of life (QOL) and mental health of women with ovarian cancer. Participants were recruited through the Pennsylvania Cancer Registry, and one hundred women took part in a mail questionnaire that collected information on their demographics, medical status, social support seeking, QOL and mental health including anxiety, depression and stress. Hierarchical linear regression analyses were conducted to assess the influence of emotional and instrumental social support seeking on QOL and mental health. After controlling for remission status, greater emotional social support seeking was predictive of higher overall QOL, social/family QOL, functional QOL and lower depression scores. Instrumental social support seeking was not significant in the models. The results illustrate that social support seeking as a coping mechanism is an important consideration in the QOL and mental health of women with ovarian cancer. Future studies should examine the psychological and behavioral mediators of the relationship to further understand the QOL and mental health of women with ovarian cancer.     

Mental health and quality of life in non-binary transgender adults: a case control study

Abstract

Background: The social challenges that non-binary people experience, due in part to social intolerance and the lack of validation of non-binary gender identities, may affect the mental health and quality of life of this population. However, studies that have distinguished between non-binary and binary transgender identities are lacking.

Aim: To compare the mental health and quality of life of a community sample of non-binary transgender adults with controls (binary transgender people and cisgender people) matched on sex assigned at birth.

Method: A total of 526 participants were included. Ninety-seven were classified as non-binary and were compared with two control groups: 91 people classified as binary and 338 cisgender people. Only transgender people not on gender affirming hormone treatment or who had not undergone gender affirming surgery were included. Participants were invited to complete an online survey that included mental health and quality of life measures.

Results: Non-binary people reported significantly better mental health than binary transgender people, but worse than cisgender people. Overall, there were no significant differences in quality of life between non-binary and binary transgender participants assigned male at birth and transgender females, but non-binary assigned males at birth had better scores on the psychological and social domains of quality of life than transgender males. Quality of life was better across all domains in cisgender people than transgender groups.

Conclusion: There is an inequality with regard to mental health and quality of life between non-binary (and binary) transgender people and the cisgender population that needs to be addressed. The better mental health scores in non-binary people may reflect lower levels of body dissatisfaction among the non-binary population. Mental health problems and poor quality of life are likely to have social causes and hence legislative measures and broader government-led inclusive directives should be put in place to recognize and to validate non-binary identifying people.     

Bereaved African American Adults: The Role of Social Support,Religious Coping,and Continuing Bonds

The present study identified relationships between social support, religious coping, continuing bonds, prolonged grief disorder (PGD) symptoms, and the quality of life among bereaved African American adults (N = 154). Perceived social support and less use of negative religious coping strategies predicted a higher quality of life and fewer PGD symptoms. Also, greater perceived social support, less use of negative religious coping strategies, and less use of continuing bonds significantly predicted fewer PGD symptoms. Implications suggest that the conceptualization of grief and loss for African Americans might include social support, religious coping, and continuing bonds.     

A comparison of two approaches to education about carrier testing for cystic fibrosis

We tested the efficacy of two types of educational materials for genetic counseling: a traditional information brochure and one adding a role model story. Brochures were alternated weekly at a prenatal genetics center. Subjects were asked to read the brochure and fill out a questionnaire covering demographics and variables from the health belief model (impact, barriers, motivation, susceptibility, knowledge, severity). A group of 409 pregnant women and 251 male partners participated. Study design was quasiexperimental, using a post-test only comparison group. The brochure with modeling enhanced the perception of both risk and the severity of the disease and was inversely associated with the assessment of barriers, but did not directly impact on the decision to pursue testing; only 12% chose to be tested, with no significant differences between groups. While suggestive, the study is not confirmatory and should be repeated with a more heterogenous group of women.     

Social-emotional aspects of quality of life in multiple sclerosis

Multiple sclerosis (MS) is an inflammatory auto-immune disease of the central nervous system. It leads to many impairments including physical, cognitive, psychological, and social challenges. Our study examined gender and cultural associations with quality of life (QoL), personal characteristics, and benefits from having MS among those with MS. The study was conducted in Austria and the United States. The sample included 128 participants, 64 in each country, of whom 78 were women and 50 were men aged between 20 and 57 years. We used standard statistical tests, including analyses of covariance (ANCOVA) and partial correlations for the analysis of quantitative data. For the qualitative part of the survey we used semi-structured interviews, which we transcribed and coded to identify categories in the answers for qualitative analyses. Austrian participants with MS perceived a higher social-emotional QoL in comparison to American participants. American participants expressed a higher self-esteem in comparison to Austrian participants. Men reported a lower ability to express love than women. Independent of sex/gender and nationality, participants reported benefits through the disease, especially with regard to improved compassion, mindfulness, improved family relations and lifestyle gains. The qualitative interviews revealed additional gender differences for coping with the illness; and in experiences, expectations, and challenges related to MS. These insights can be used to develop targeted psychological and social support interventions aimed toward improving social-emotional QoL for persons with MS.     

Health-related quality of life in transgender adolescents: Associations with body image and emotional and behavioral problems

Background: Transgender adolescents who apply for treatment often experience a marked increase in body-related distress when entering puberty, accompanied by internalizing problems and poor peer relations. Although adolescence is a time of considerable psychosocial and physical change, generally associated with a decline in health-related quality of life (HRQoL), research on HRQoL in transgender youth and possible predictors is sparse. This study thus aims to explore the predictive value of body image factors and emotional and behavioral problems for HRQoL.

Methods: This cross-sectional one-group observational study was carried out at the Child and Adolescent psychiatric department (Gender Identity Service) in Hamburg, Germany. A sample of n = 126 (103 trans male and 23 trans female) adolescents, who were referred for counseling and/or treatment completed different standardized instruments before undergoing any sort of treatment. Firstly, five dimensions of HRQoL were explored in transgender adolescents and secondly, a linear regression model was applied to assess the impact of body image and emotional and behavioral problems on overall HRQoL.

Results: HRQoL was generally impaired in transgender adolescents compared to norm scores, especially with regard to aspects of psychological and physical well-being. Linear regression analysis revealed that greater internalizing problems and less body satisfaction significantly predicted lower HRQoL outcomes.

Conclusions: Impaired HRQoL may be explained by high degrees of internalizing problems and low body satisfaction. Thus, one important aim of mental health professionals working with youth should be to provide appropriate treatment and counseling options that may contribute to overall well-being in the long-term.     

Development of a social emotional information processing assessment for adults (SEIP‐Q)

An expanded self‐report, vignette‐based, questionnaire was developed to assess five components in a social emotional information processing model (SEIP: attribution, emotional response, response valuation, outcome expectancy, response efficacy, and response enactment), first in a population‐based sample (n = 250) and, second in healthy control participants (n = 50) and in those with DSM‐5 Intermittent Explosive Disorder (IED: n = 50). SEIP‐Q vignettes depict, separately, both overtly aggressive and relationally aggressive as well as socially ambivalent scenarios. This expanded SEIP‐Q assessment demonstrated good internal reliability, as well as convergent and discriminant validity, for all five SEIP components. IED participants differed from healthy controls in all SEIP‐Q components. This expanded SEIP‐Q assessment is thus proposed as a reliable and valid method for studying the various stages of SEIP in adult human subjects. Aggr. Behav. 43:47–59, 2017. © 2016 Wiley Periodicals, Inc.     

Coping strategies and perceived social support in fibromyalgia syndrome: Relationship with alexithymia

Fibromyalgia (FM ) is a chronic pain syndrome characterized by high levels of psychological distress and alexithymia, a personality disposition affecting emotional self‐awareness. The main aim of the present study was to investigate for the first time the relationship between alexithymia and coping strategies on the one hand, and alexithymia and perceived social support on the other, in a sample of FM patients. To reach this aim, 153 FM patients completed a battery of tests assessing coping strategies, perceived social support, alexithymia, psychological distress and pain intensity. Four regression analyses were performed to assess whether alexithymia was still a significant predictor of coping strategies and perceived social support, after controlling for psychological distress. High levels of both psychological distress and alexithymia were found in our sample of FM patients. Regarding coping strategies, FM patients reported higher scores on problem‐focused coping, with respect to the other two coping strategies. The regression analyses showed that the externally‐oriented thinking factor of alexithymia significantly explained both problem‐ and emotion‐focused coping, while the difficulty‐describing feelings factor of alexithymia proved to be a significant predictor of perceived social support. Only the variance of dysfunctional coping ceased to be uniquely explained by alexithymia (difficulty identifying feelings factor), after controlling for psychological distress, particularly anxiety. These results highlight a negative relationship between alexithymia and both the use of effective coping strategies and the levels of perceived social support in FM patients. An adequate assessment of both alexithymia and psychological distress should therefore be included in clinical practice with these patients.     

Counseling and screening for cystic fibrosis in patients with congenital bilateral absence of the vas deferens: Patient perceptions

Congenital bilateral absence of the vas deferens (CBAVD) occurs in approximately 1.3% of infertile males and is thought to be, in most cases, a primarily genital form of cystic fibrosis (CF). Fourteen males with CBAVD considering microsurgical sperm aspiration from the epididymis (MESA) and in vitro fertilization were seen for genetic counseling and screening for CF. To retrospectively evaluate these patients' perceptions of the counseling and screening information, we conducted structured telephone interviews to assess their recall of information about CF and its impact on their health concerns and reproductive plans. We found that, as the health implications of CF are abstract and not as important to patients as the diagnosis of CBAVD itself, patients tend to view their CF status primarily in terms of their reproductive potential. Retrospective analysis afforded us an opportunity to identify the psychosocial issues of most concern to this unique patient population.