Couple-based expanded carrier screening provided by general practitioners to couples in the Dutch general population: psychological outcomes and reproductive intentions

Genet Med. 2021 Jun 10. doi: 10.1038/s41436-021-01199-6. Online ahead of print.


PURPOSE: The aim of expanded preconception carrier screening (ECS) is to inform any couple wishing to conceive about their chances of having children with severe autosomal or X-linked recessive conditions. Responsible implementation of ECS as reproductive genetic screening in routine care requires assessment of benefits and harms. We examined the psychological outcomes of couple-based ECS for 50 autosomal recessive (AR) conditions provided by general practitioners (GPs) to couples from the Dutch general population.

METHODS: Dutch GPs invited 4,295 women aged 18-40. We examined anxiety (State-Trait Anxiety Inventory, STAI-6), worry, decisional conflict (DCS) over time in participants declining GP counseling or attending GP counseling with/without testing.

RESULTS: One hundred ninety couples participated; 130 attended counseling, of whom 117 proceeded with testing. No carrier couples were identified. Before counseling, worry (median 6.0) and anxiety (mean 30-34) were low and lower than the population reference (36.4), although some individuals reported increased anxiety or worry. At follow-up, test acceptors reported less anxiety than test decliners (mean 29 vs. 35); differences in anxiety after testing compared to before counseling were not meaningful. Most participants (90%) were satisfied with their decision (not) to undergo testing.

CONCLUSION: Some individuals reported temporarily clinically relevant distress. Overall, the psychological outcomes are acceptable and no barrier to population-wide implementation.

PMID:34112999 | DOI:10.1038/s41436-021-01199-6

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Attitudes and Perceptions of Parenthood Among Young Adult Survivors of Childhood Cancer

J Adolesc Young Adult Oncol. 2021 May 17. doi: 10.1089/jayao.2020.0213. Online ahead of print.


Purpose: Increasing numbers of childhood cancer survivors enter adulthood and encounter decisions surrounding parenthood. However, limited research has systematically examined how childhood cancer may influence parenthood attitudes among survivors. Methods: Adult survivors of childhood cancer, who had or wanted to have children (N = 77; Mage = 30.2 years, range: 22-43; 91% White), rated their perceived impact of cancer at enrollment and parenthood attitudes using the “Attitudes to Parenthood After Cancer Scale” 2 years later. First, internal consistencies for the parenthood measure were examined, and modified subscales were proposed. Second, hierarchical stepwise regressions analyzed the contribution of background factors and cancer’s impact on parenthood attitudes. Results: Reevaluation of parenthood items yielded four subscales with improved internal consistency (α’s > .78): improved parenting due to cancer, no children due to cancer, concerns about a (potential) child’s health, and parenthood desire irrespective of own health concerns. Already having children (n = 38) was related to more favorable ratings on most subscales. Older age was associated with perceiving improved parenting due to cancer (r = .24) and shorter time since diagnosis was related to considering having no children due to cancer (r = -.23). Hierarchical stepwise regressions reconfirmed parenthood status as related to more favorable parenting attitudes. Cancer preoccupation and perceiving cancer as a most difficult life experience predicted more concerns toward parenthood (R2 = .044-.216). Conclusions: Parenthood attitudes were more favorable among survivors with children, who were older, and/or further into survivorship. Survivors burdened by their cancer experience reported more concerns about parenthood. Childhood cancer may shape parenthood perceptions positively and negatively, warranting further research to inform interventions.

PMID:33999693 | DOI:10.1089/jayao.2020.0213

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Trajectories of fatigue in cancer patients during psychological care

Psychol Health. 2021 May 13:1-20. doi: 10.1080/08870446.2021.1916493. Online ahead of print.


OBJECTIVE: Psycho-oncological institutions offer specialized care for cancer patients. Little is known how this care might impact fatigue. This study aimed to identify fatigue trajectories during psychological care, examined factors distinguishing these trajectories and predicted fatigue severity after nine months of psychological care.

DESIGN: Naturalistic, longitudinal study of 238 cancer patients receiving psycho-oncological care in the Netherlands. Data were collected before initiation of psychological care (T1) and three (T2) and nine months (T3) afterwards. Latent class growth analysis, repeated measure analyses (RMA) and linear regression analysis were performed.

MAIN OUTCOME MEASURES: Fatigue severity: Checklist Individual Strength.

RESULTS: Three fatigue trajectories were identified: high- (30%), moderate- (62%) and low-level fatigue (8%). While statistically significant decreases in fatigue were found, this decrease was not clinically relevant. RMA showed main effects for time for fatigue trajectories on depression, anxiety, personal control and illness cognitions. Fatigue severity and physical symptoms at T1, but not demographic or clinical factors, were predictive of fatigue severity at T3.

CONCLUSIONS: Fatigue is very common during psycho-oncological care, and notably not clinically improving. As symptoms of fatigue, depression, anxiety and physical symptoms often cluster, supplementary fatigue treatment should be considered when it is decided to treat other symptoms first.

PMID:33985383 | DOI:10.1080/08870446.2021.1916493

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Psychological functioning and well-being before and after bariatric surgery; what is the benefit of being self-compassionate?

Br J Health Psychol. 2021 May 12. doi: 10.1111/bjhp.12532. Online ahead of print.


OBJECTIVE: To investigate whether patients’ psychological well-being (depression, quality of life, body image satisfaction) and functioning (self-efficacy for eating and exercising behaviours and food cravings) improve 12 months after bariatric surgery and whether self-compassion is associated with better psychological outcomes and lower weight after bariatric surgery.

DESIGN: Longitudinal, prospective observational study.

METHODS: Bariatric patients (n = 126, 77.8% female, 46.4 ± 10.8 years) completed the Self-compassion Scale, Center for Epidemiology Studies Depression Scale, Impact of Weight on Quality-of-Life questionnaire, Body Image Scale, Weight Efficacy Lifestyle Questionnaire, Spinal Cord Injury Exercise Self-Efficacy Scale, and G-Food Craving Questionnaire pre-operatively and 12 months post-operatively. A medical professional measured patients’ weight during each assessment. Data were analysed using repeated measures t-tests and multivariate regression analyses with Benjamini-Hochberg correction for multiple testing.

RESULTS: Patients’ BMI, depression, and food cravings decreased significantly after surgery while quality of life, body image satisfaction, and self-efficacy to exercise improved. Higher self-compassion was associated with lower post-operative depression, greater quality of life, higher body image satisfaction, and better self-efficacy for eating behaviours (p-values <.05) but not with post-operative BMI, self-efficacy to exercise, or food cravings.

CONCLUSIONS: Even though pre-operative self-compassion was not directly associated with a lower 12-month post-operative BMI, it had a positive relationship with patients’ post-operative well-being and self-efficacy for controlling eating behaviour. In turn, this could help patients to manage their health long after bariatric surgery. Further work regarding the role of self-compassion on long-term health outcomes would be worthwhile.

PMID:33982392 | DOI:10.1111/bjhp.12532

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Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy

Eur J Paediatr Neurol. 2021 May;32:128-135. doi: 10.1016/j.ejpn.2021.03.015. Epub 2021 Apr 2.


Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients’ or parents’ perspectives is, however, unknown. We studied the counselee-reported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment – a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope – and anxiety. We asked patients or their parents (for those <16 years or intellectually disabled) referred for genetic testing for epilepsy in two university hospitals between June 2014 and 2017 to complete the same two questionnaires at three timepoints: before and after pre-test counselling and after post-test counselling. Empowerment was measured with the Genetic Counselling Outcome Scale (GCOS-18); anxiety with the short State Trait Anxiety Inventory (STAI-6). A total of 63 participants (55 parents with the age of 29-66 years; 8 patients with the age of 21-42 years) were included in our study. Empowerment significantly increased during the genetic counselling trajectory with a medium effect size (p < 0.001, d = 0.57). A small but significant increase in empowerment was already seen after pre-test counselling (p = 0.038, d = 0.29). Anxiety did not change significantly during the counselling trajectory (p = 0.223, d = -0.24). Our study highlights that patients with epilepsy or their parents show a clinically relevant increase in empowerment after genetic counselling. Empowerment was already increased after pre-test counselling, suggesting the importance of counselling before initiating genetic testing for epilepsy. However, individual differences in changes in empowerment and anxiety were seen, suggesting that counselling could be further improved, based on individual needs.

PMID:33971557 | DOI:10.1016/j.ejpn.2021.03.015

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Sleep Quality and Physical Activity as Predictors of Mental Wellbeing Variance in Older Adults during COVID-19 Lockdown: ECLB COVID-19 International Online Survey

Int J Environ Res Public Health. 2021 Apr 19;18(8):4329. doi: 10.3390/ijerph18084329.


BACKGROUND: The COVID-19 lockdown could engender disruption to lifestyle behaviors, thus impairing mental wellbeing in the general population. This study investigated whether sociodemographic variables, changes in physical activity, and sleep quality from pre- to during lockdown were predictors of change in mental wellbeing in quarantined older adults.

METHODS: A 12-week international online survey was launched in 14 languages on 6 April 2020. Forty-one research institutions from Europe, Western-Asia, North-Africa, and the Americas, promoted the survey. The survey was presented in a differential format with questions related to responses “pre” and “during” the lockdown period. Participants responded to the Short Warwick-Edinburgh Mental Wellbeing Scale, the Pittsburgh Sleep Quality Index (PSQI) questionnaire, and the short form of the International Physical Activity Questionnaire.

RESULTS: Replies from older adults (aged >55 years, n = 517), mainly from Europe (50.1%), Western-Asia (6.8%), America (30%), and North-Africa (9.3%) were analyzed. The COVID-19 lockdown led to significantly decreased mental wellbeing, sleep quality, and total physical activity energy expenditure levels (all p < 0.001). Regression analysis showed that the change in total PSQI score and total physical activity energy expenditure (F(2, 514) = 66.41 p < 0.001) were significant predictors of the decrease in mental wellbeing from pre- to during lockdown (p < 0.001, R2: 0.20).

CONCLUSION: COVID-19 lockdown deleteriously affected physical activity and sleep patterns. Furthermore, change in the total PSQI score and total physical activity energy expenditure were significant predictors for the decrease in mental wellbeing.

PMID:33921852 | PMC:PMC8073845 | DOI:10.3390/ijerph18084329

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Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial

J Med Internet Res. 2021 Apr 7;23(4):e21466. doi: 10.2196/21466.


BACKGROUND: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.

OBJECTIVE: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.

METHODS: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.

RESULTS: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=-0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention’s platform and the choice of content.

CONCLUSIONS: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.


PMID:33825687 | PMC:PMC8060860 | DOI:10.2196/21466

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Psychosocial Effects and Use of Communication Technologies during Home Confinement in the First Wave of the COVID-19 Pandemic in Italy and The Netherlands

Int J Environ Res Public Health. 2021 Mar 5;18(5):2619. doi: 10.3390/ijerph18052619.


(1) Background: The COVID-19 pandemic forced people from all around the globe to strongly modify their daily routines, putting a significant strain on the social aspects of daily lives. While the first wave of the pandemic was a very challenging time in all countries, it is still uncertain whether various lockdown intensities and infection rates differed regarding their psychosocial impact. This work therefore aimed to investigate (i) the psychosocial effects of home confinement in two European countries that underwent different lockdown intensities: Italy and the Netherlands and (ii) the role of communication technology in relation to feelings of loneliness. (2) Methods: A cross-sectional online survey inquiring about different psychosocial variables and the use of and satisfaction towards communication technology was circulated among the general public during the first wave of the COVID-19 pandemic. In total, 629 participants (66% female, 68% from the Netherlands) answered each question twice, referring to “before” and “during” the pandemic. (3) Results: We found significant negative effects of COVID-19 home confinement on depressive feelings (p < 0.001, %∆ = +54%), loneliness (p < 0.001, %∆ = +37.3%), life satisfaction (p < 0.001, %∆ = -19.8%) and mental wellbeing (p < 0.001, %∆ = -10.6%) which were accompanied with a significantly increased need for psychosocial support (p < 0.001, %∆ = +17.3%). However, the magnitude of psychosocial impact did not significantly differ between residents undergoing a more intense (Italy) versus a less intense (Netherlands) lockdown, although the decrease in social participation was found to be significantly different for both countries (z = -7.714, p < 0.001). Furthermore, our findings demonstrate that the increase in loneliness was associated with the adoption of new digital communication tools (r = 0.21, p < 0.001), and significantly higher for individuals who started to adopt at least one new digital communication tool during confinement than for those who did not (z = -4.252, p < 0.001). (4) Conclusions: This study highlights that, although COVID-19 home confinement significantly impacted psychosocial wellbeing during the first wave of the pandemic, this impact did not differ based on lockdown intensity. Recognizing the increasing adoption of digital communication technology in an attempt to reduce lockdown loneliness, future studies should investigate what is needed from the technology to achieve this effect.

PMID:33807851 | PMC:PMC7967354 | DOI:10.3390/ijerph18052619

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Effects of home confinement on mental health and lifestyle behaviours during the COVID-19 outbreak: insights from the ECLB-COVID19 multicentre study

Biol Sport. 2021 Mar;38(1):9-21. doi: 10.5114/biolsport.2020.96857. Epub 2020 Aug 3.


Although recognised as effective measures to curb the spread of the COVID-19 outbreak, social distancing and self-isolation have been suggested to generate a burden throughout the population. To provide scientific data to help identify risk factors for the psychosocial strain during the COVID-19 outbreak, an international cross-disciplinary online survey was circulated in April 2020. This report outlines the mental, emotional and behavioural consequences of COVID-19 home confinement. The ECLB-COVID19 electronic survey was designed by a steering group of multidisciplinary scientists, following a structured review of the literature. The survey was uploaded and shared on the Google online survey platform and was promoted by thirty-five research organizations from Europe, North Africa, Western Asia and the Americas. Questions were presented in a differential format with questions related to responses “before” and “during” the confinement period. 1047 replies (54% women) from Western Asia (36%), North Africa (40%), Europe (21%) and other continents (3%) were analysed. The COVID-19 home confinement evoked a negative effect on mental wellbeing and emotional status (P < 0.001; 0.43 ≤ d ≤ 0.65) with a greater proportion of individuals experiencing psychosocial and emotional disorders (+10% to +16.5%). These psychosocial tolls were associated with unhealthy lifestyle behaviours with a greater proportion of individuals experiencing (i) physical (+15.2%) and social (+71.2%) inactivity, (ii) poor sleep quality (+12.8%), (iii) unhealthy diet behaviours (+10%), and (iv) unemployment (6%). Conversely, participants demonstrated a greater use (+15%) of technology during the confinement period. These findings elucidate the risk of psychosocial strain during the COVID-19 home confinement period and provide a clear remit for the urgent implementation of technology-based intervention to foster an Active and Healthy Confinement Lifestyle AHCL).

PMID:33795912 | PMC:PMC7996377 | DOI:10.5114/biolsport.2020.96857

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Trajectories of Fatigue in Inflammatory Bowel Disease

Inflamm Bowel Dis. 2021 Mar 26:izab007. doi: 10.1093/ibd/izab007. Online ahead of print.


BACKGROUND: Fatigue is one of the most frequently reported symptoms by patients with inflammatory bowel disease (IBD), both during active disease phases as well as during clinical remission. This study addressed whether different trajectories of fatigue over time can be identified among patients with IBD. Subsequently, we compared the demographic and clinical characteristics between trajectories.

METHODS: The current study included 849 patients with IBD diagnosed with either Crohn disease (CD; n = 511) or ulcerative colitis (UC; n = 338) who visited the University Medical Center in Groningen (the Netherlands) at least 3 times during a 9-year follow-up. We conducted latent class growth analyses to identify distinct trajectories.

RESULTS: In all patients with IBD (and in the subgroup with CD), we found 5 trajectories for fatigue. In the UC subgroup, we found 4 fatigue trajectories. One trajectory present in both patients with CD (11.45%) and patients with UC (4.75%) was characterized by chronic elevated levels of fatigue across time. Women and parents were more prevalent in trajectories with higher fatigue severity. We also found significant associations among the fatigue trajectories with disease activity and psychological well-being.

CONCLUSIONS: The results clearly showed the existence of distinct fatigue paths over time in patients with IBD. Those reporting more chronic elevated levels of fatigue also reported greater disease activity and reduced well-being. Therefore, reducing disease activity may be important for the treatment of fatigue. In addition, given the significant association with well-being, it is possible that reducing fatigue may improve self-reported well-being.

PMID:33769489 | DOI:10.1093/ibd/izab007

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