The mediating role of health behaviors in the association between depression, anxiety and cancer incidence: an individual participant data meta-analysis.

BACKGROUND: Although behavioral mechanisms in the association among depression, anxiety, and cancer are plausible, few studies have empirically studied mediation by health behaviors. We aimed to examine the mediating role of several health behaviors in the associations among depression, anxiety, and the incidence of various cancer types (overall, breast, prostate, lung, colorectal, smoking-related, and alcohol-related cancers). METHODS: Two-stage individual participant data meta-analyses were performed based on 18 cohorts within the Psychosocial Factors and Cancer Incidence consortium that had a measure of depression or anxiety (N = 319 613, cancer incidence = 25 803). Health behaviors included smoking, physical inactivity, alcohol use, body mass index (BMI), sedentary behavior, and sleep duration and quality. In stage one, path-specific regression estimates were obtained in each cohort. In stage two, cohort-specific estimates were pooled using random-effects multivariate meta-analysis, and natural indirect effects (i.e. mediating effects) were calculated as hazard ratios (HRs). RESULTS: Smoking (HRs range 1.04-1.10) and physical inactivity (HRs range 1.01-1.02) significantly mediated the associations among depression, anxiety, and lung cancer. Smoking was also a mediator for smoking-related cancers (HRs range 1.03-1.06). There was mediation by health behaviors, especially smoking, physical inactivity, alcohol use, and a higher BMI, in the associations among depression, anxiety, and overall cancer or other types of cancer, but effects were small (HRs generally below 1.01). CONCLUSIONS: Smoking constitutes a mediating pathway linking depression and anxiety to lung cancer and smoking-related cancers. Our findings underline the importance of smoking cessation interventions for persons with depression or anxiety.

Psychosocial factors, health behaviors and risk of cancer incidence: Testing interaction and effect modification in an individual participant data meta-analysis.

Depression, anxiety and other psychosocial factors are hypothesized to be involved in cancer development. We examined whether psychosocial factors interact with or modify the effects of health behaviors, such as smoking and alcohol use, in relation to cancer incidence. Two-stage individual participant data meta-analyses were performed based on 22 cohorts of the PSYchosocial factors and CAncer (PSY-CA) study. We examined nine psychosocial factors (depression diagnosis, depression symptoms, anxiety diagnosis, anxiety symptoms, perceived social support, loss events, general distress, neuroticism, relationship status), seven health behaviors/behavior-related factors (smoking, alcohol use, physical activity, body mass index, sedentary behavior, sleep quality, sleep duration) and seven cancer outcomes (overall cancer, smoking-related, alcohol-related, breast, lung, prostate, colorectal). Effects of the psychosocial factor, health behavior and their product term on cancer incidence were estimated using Cox regression. We pooled cohort-specific estimates using multivariate random-effects meta-analyses. Additive and multiplicative interaction/effect modification was examined. This study involved 437,827 participants, 36,961 incident cancer diagnoses, and 4,749,481 person years of follow-up. Out of 744 combinations of psychosocial factors, health behaviors, and cancer outcomes, we found no evidence of interaction. Effect modification was found for some combinations, but there were no clear patterns for any particular factors or outcomes involved. In this first large study to systematically examine potential interaction and effect modification, we found no evidence for psychosocial factors to interact with or modify health behaviors in relation to cancer incidence. The behavioral risk profile for cancer incidence is similar in people with and without psychosocial stress.

Depression, anxiety, and the risk of cancer: An individual participant data meta-analysis.

BACKGROUND: Depression and anxiety have long been hypothesized to be related to an increased cancer risk. Despite the great amount of research that has been conducted, findings are inconclusive. To provide a stronger basis for addressing the associations between depression, anxiety, and the incidence of various cancer types (overall, breast, lung, prostate, colorectal, alcohol-related, and smoking-related cancers), individual participant data (IPD) meta-analyses were performed within the Psychosocial Factors and Cancer Incidence (PSY-CA) consortium. METHODS: The PSY-CA consortium includes data from 18 cohorts with measures of depression or anxiety (up to N = 319,613; cancer incidences, 25,803; person-years of follow-up, 3,254,714). Both symptoms and a diagnosis of depression and anxiety were examined as predictors of future cancer risk. Two-stage IPD meta-analyses were run, first by using Cox regression models in each cohort (stage 1), and then by aggregating the results in random-effects meta-analyses (stage 2). RESULTS: No associations were found between depression or anxiety and overall, breast, prostate, colorectal, and alcohol-related cancers. Depression and anxiety (symptoms and diagnoses) were associated with the incidence of lung cancer and smoking-related cancers (hazard ratios [HRs], 1.06-1.60). However, these associations were substantially attenuated when additionally adjusting for known risk factors including smoking, alcohol use, and body mass index (HRs, 1.04-1.23). CONCLUSIONS: Depression and anxiety are not related to increased risk for most cancer outcomes, except for lung and smoking-related cancers. This study shows that key covariates are likely to explain the relationship between depression, anxiety, and lung and smoking-related cancers. PREREGISTRATION NUMBER: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=157677.

Stress appraisal and emotion regulation mediate the association between mindfulness and affect in cancer patients: Differential mechanisms for positive and negative affect.

OBJECTIVE: Cancer patients are at an increased risk for affective problems, including feelings of anxiety and depression. Mindfulness has been linked to an array of benefits for affective functioning in various populations including cancer patients, but the mechanisms underlying this relationship are still poorly understood. Based on emotion-regulation and stress-coping models, this study examined the potential mediating role of stress appraisal and coping strategies in the associations between mindfulness and cancer patients' positive and negative affect. METHODS: For this cross-sectional study, 245 cancer patients completed self-report questionnaires measuring mindfulness (FFMQ), positive and negative affect (PANAS), stress appraisal (SPSI-R:S), coping through positive reappraisal and positive refocusing (CERQ), rumination (RRQ), and distraction (COPE). Serial mediation analyses were conducted using the regression-based bootstrapping method. RESULTS: Higher levels of mindfulness were associated with higher levels of positive affect; this relationship was mediated via stress appraisal and positive reappraisal. We also found an indirect effect from mindfulness directly via positive reappraisal to positive affect. In addition, higher levels of mindfulness were negatively associated with negative affect; this relationship was mediated via stress appraisal and rumination, with also an indirect effect from mindfulness directly via stress appraisal to negative affect. CONCLUSIONS: Results suggest that stress appraisal and distinct coping strategies mediate the relationship between mindfulness and affect. Mindfulness may provide benefits for cancer patients' affect by allowing adaptive stress appraisal and ways of coping through more positive and less negative thinking.

Personal Health Record for Personalizing Research and Care Trajectories: A Proof of Concept Pilot with Diet in Inflammatory Bowel Diseases.

Combinations of health-related research data and clinical data generated, e.g., from wearables, can increasingly provide new insights about a person's health. Combining these data in a personal health record (PHR), which is managed by citizens themselves, can enhance research and enable both personalized care and prevention. We piloted a hybrid PHR using it for scientific research and the concomitant return of individual findings for clinical information and prevention purposes. The obtained information on the quality of daily dietary intake allowed researchers to further investigate the association between diet and inflammatory bowel diseases (IBDs). Additionally, the feedback enabled participants to adjust their food intake to improve the quality and prevent nutritional deficiency, thereby increasing their health. Our results showed that a PHR including a Research Connection can be successfully used for both purposes but requires a good embedding in both research and healthcare processes with the cooperation of healthcare professionals and researchers. Addressing these challenges is key in the pursuit of delivering personalized medicine and building learning health systems with PHRs.

Parent-reported phenotype data on chromosome 6 aberrations collected via an online questionnaire: data consistency and data availability.

BACKGROUND: Even with the introduction of new genetic techniques that enable accurate genomic characterization, knowledge about the phenotypic spectrum of rare chromosomal disorders is still limited, both in literature and existing databases. Yet this clinical information is of utmost importance for health professionals and the parents of children with rare diseases. Since existing databases are often hampered by the limited time and willingness of health professionals to input new data, we collected phenotype data directly from parents of children with a chromosome 6 disorder. These parents were reached via social media, and the information was collected via the online Chromosome 6 Questionnaire, which includes 115 main questions on congenital abnormalities, medical problems, behaviour, growth and development. METHODS: Here, we assess data consistency by comparing parent-reported phenotypes to phenotypes based on copies of medical files for the same individual (n = 20) and data availability by comparing the data available on specific characteristics reported by parents (n = 34) to data available in existing literature (n = 39). RESULTS: The reported answers to the main questions on phenotype characteristics were 85-95% consistent, and the consistency of answers to subsequent more detailed questions was 77-96%. For all but two main questions, significantly more data was collected from parents via the Chromosome 6 Questionnaire than was currently available in literature. For the topics developmental delay and brain abnormalities, no significant difference in the amount of available data was found. The only feature for which significantly more data was available in literature was a sub-question on the type of brain abnormality present. CONCLUSION: This is the first study to compare phenotype data collected directly from parents to data extracted from medical files on the same individuals. We found that the data was highly consistent, and phenotype data collected via the online Chromosome 6 Questionnaire resulted in more available information on most clinical characteristics when compared to phenotypes reported in literature reports thus far. We encourage active patient participation in rare disease research and have shown that parent-reported phenotypes are reliable and contribute to our knowledge of the phenotypic spectrum of rare chromosomal disorders.

Does social support at home moderate the association between social support at work and work functioning among cancer patients?

PURPOSE: The aims of this study were to examine (1) the longitudinal associations of supervisor and colleague social support with work functioning in cancer patients who have returned to work and (2) the moderating role of social support at home. METHODS: Data from the longitudinal Work Life after Cancer study were used (n = 384). Work functioning (low versus moderate to high work functioning) was measured with the validated Work Role Functioning Questionnaire 2.0. Social support at work was measured from both supervisor and colleagues with the Copenhagen Psychosocial Questionnaire. Social support at home was measured with the Social Support List-Discrepancies. Logistic generalized estimating equations were used to analyse associations between supervisor and colleague social support and work functioning, and to examine the possible moderating effect of social support at home. RESULTS: More supervisor (OR: 1.21; 95% CI: 1.10, 1.32) and colleague (1.13; 1.03, 1.24) social support were significantly associated with moderate to high work functioning. The association between colleague social support and work functioning was attenuated for those who did not experience enough social support at home but remained almost significant for supervisor social support (1.17; 1.00, 1.37). CONCLUSIONS: Supervisor social support is associated with better work functioning regardless of social support at home, while colleague social support is only associated with better work functioning when cancer patients experience enough social support at home. IMPLICATIONS FOR CANCER SURVIVORS: Occupational physicians may play a key role in creating awareness that social support at work and at home are beneficial for cancer patients' work functioning.

Strategies for Long-Term Maintenance of Physical Activity Among Older Adults: A Qualitative Study From India.

Long-term physical activity (PA) maintenance is challenging for older adults. Equipping older adults with strategies to support long-term PA maintenance can be an effective way to tackle this problem. Moreover, there is a lack of studies regarding long-term PA maintenance among older adults from non-Western settings. This qualitative research is one of the first studies conducted in an Indian context that explores the strategies developed and utilized by older adults who have successfully maintained their PA for the long term (>1 year) in their home settings. In-depth semistructured interviews were conducted with 19 older adults, and data were analyzed using an inductive reflexive thematic analysis approach. This article reports five strategies of PA maintenance, together comprising 13 substrategies. This study highlights the importance of using strategies to support the long-term maintenance of PA among older adults in India. However, these strategies would also be useful in other sociocultural contexts.

Sub-groups (profiles) of individuals experiencing post-traumatic growth during the COVID-19 pandemic.

Objective: Some people experience post-traumatic growth (PTG), entailing positive changes such as a greater appreciation of life following traumatic events. We examined PTG in the context of the negative consequences of the COVID-19 pandemic, notably working from home and social distancing. We aimed to assess whether distinct sub-groups (profiles) of individuals experiencing PTG could be identified by how they appraised and coped with the COVID-19 pandemic. Method: For this cross-sectional study, we used convenience sampling. In total, 951 participants from the general population completed an online questionnaire with items focusing on primary and secondary appraisal, positive reappraisal, rumination, and coping flexibility. For the latent profile analysis, we selected a sample of 392 individuals who had experienced moderate degrees of pandemic-related PTG, reporting at least two of the 10 positive changes in the PTG Inventory-Short Form. Results: We identified two distinct profiles among people experiencing PTG. The first was characterised by low levels of primary appraisal and stressfulness and higher levels of secondary appraisal (e.g., resilient group), increased coping flexibility and greater use of positive reappraisal. The second was characterised by higher levels of stressfulness and primary appraisal (e.g., stressed group) and greater use of rumination. Conclusion: The two sub-groups evidently appraised and coped with the COVID-19 pandemic differently. Therefore, future research should account for these different profiles of people experiencing PTG.

Are cancer patients with high depressive symptom levels able to manage these symptoms without professional care? The role of coping and social support.

OBJECTIVE: Around 25% of cancer patients experiences depressive symptoms. However, the majority does not receive formal psychological care because patients often prefer managing symptoms alone or with informal social support. Previous research has shown that adaptive coping and social support can indeed be effective in managing relatively mild depressive symptoms. However, higher depressive symptom levels rarely improve without psychological treatment. This longitudinal study examined how and to what extent coping and social support are related to reductions in depressive symptoms in cancer patients with moderate to severe depressive symptoms. METHODS: Respondents were diagnosed with cancer in the past five years, experienced high depressive symptom levels (PHQ-9 ≥ 10) and were not receiving psychological care at baseline. We collected data with self-report questionnaires (including PHQ-9, brief COPE and Social Support List) at two assessments, taken three months apart. RESULTS: Although depressive symptoms decreased significantly between baseline and follow-up, the average level at follow-up was still moderate to severe. Patients using less avoidant coping, specifically less substance use, were more likely to report a reduction of depressive symptoms. We found no significant beneficial effects of approach coping and social support (coping) on the course of depressive symptoms. CONCLUSIONS: A significant group of cancer patients with high levels of depressive symptoms do not seem able to effectively manage depressive symptoms by themselves, especially those more likely to avoid dealing with their symptoms. Cancer patients can be educated about avoidant coping and its possible detrimental effects, as well as being informed about possibilities of psychosocial services.

Trajectories of fatigue in cancer patients during psychological care.

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.

Understanding care needs of cancer patients with depressive symptoms: The importance of patients' recognition of depressive symptoms.

OBJECTIVE: The majority of cancer patients with depressive symptoms does not perceive a need for psychological care. Reasons for this are still unclear. We examined the mediating role of cancer patients' perceptions of depressive symptoms in the relationship between depressive symptoms and perceived need for psychological care. METHODS: For this cross-sectional study, we recruited 127 Dutch cancer patients with moderate to severe levels of depressive symptoms (Patient Health Questionnaire [PHQ]-9≥10) who did not receive professional psychological care. Depressive symptoms were measured with the PHQ-9 questionnaire, by using three different depression score operationalizations. We used mediation analyses to test the mediating role of patients' illness perceptions (measured with subscales of the Brief Illness Perception Questionnaire) in the relation between depressive symptoms and need for care. RESULTS: Whilst results did not show significant direct associations between depressive symptoms and perceived need for psychological care, we found positive indirect effects of severity (B = 0.07, SE = 0.04, p < 0.02), meeting the DSM-5 diagnosis (B = 0.45, SE = 0.26, p < 0.02) and having relatively more affective symptoms (B = 2.37, SE = 1.10, p < 0.02) on need for care through the identity perception. CONCLUSIONS: Including assessments of patients' recognition of depressive symptoms and their perceptions of depression treatment efficacy might improve depression screening in cancer patients by more accurately identifying those with a need for psychological care. Moreover, improving patients' knowledge and recognition of symptoms as being depressive symptoms might be a possible target point in increasing care needs and hereby optimizing the uptake of psychological care in cancer patients with depressive symptoms.

Parental experiences of rapid exome sequencing in cases with major ultrasound anomalies during pregnancy.

BACKGROUND: Adding rapid exome sequencing (rES) to conventional genetic tests improves the diagnostic yield of pregnancies showing ultrasound abnormalities but also carries a higher chance of unsolicited findings. We evaluated how rES, including pre- and post-test counseling, was experienced by parents investigating its impact on decision-making and experienced levels of anxiety. METHODS: A mixed-methods approach was adopted. Participating couples (n = 46) were asked to fill in two surveys (pre-test and post-test counseling) and 11 couples were approached for an additional interview. RESULTS: All couples accepted the rES test-offer with the most important reason for testing emphasizing their hope of finding an underlying diagnosis that would aid decision-making. The actual impact on decision-making was low, however, since most parents decided to terminate the pregnancy based on the major and multiple fetal ultrasound anomalies and did not wait for their rES results. Anxiety was elevated for most participants and decreased over time. CONCLUSION: Major congenital anomalies detected on ultrasound seem to have more impact on prenatal parental decision-making and anxiety then the offer and results of rES. However, the impact of rES on reproductive decision-making and experienced anxiety requires further investigation, especially in pregnancies where less (severe) fetal anomalies are detected on ultrasound.

Psychosocial factors and cancer incidence (PSY-CA): Protocol for individual participant data meta-analyses.

OBJECTIVES: Psychosocial factors have been hypothesized to increase the risk of cancer. This study aims (1) to test whether psychosocial factors (depression, anxiety, recent loss events, subjective social support, relationship status, general distress, and neuroticism) are associated with the incidence of any cancer (any, breast, lung, prostate, colorectal, smoking-related, and alcohol-related); (2) to test the interaction between psychosocial factors and factors related to cancer risk (smoking, alcohol use, weight, physical activity, sedentary behavior, sleep, age, sex, education, hormone replacement therapy, and menopausal status) with regard to the incidence of cancer; and (3) to test the mediating role of health behaviors (smoking, alcohol use, weight, physical activity, sedentary behavior, and sleep) in the relationship between psychosocial factors and the incidence of cancer. METHODS: The psychosocial factors and cancer incidence (PSY-CA) consortium was established involving experts in the field of (psycho-)oncology, methodology, and epidemiology. Using data collected in 18 cohorts (N = 617,355), a preplanned two-stage individual participant data (IPD) meta-analysis is proposed. Standardized analyses will be conducted on harmonized datasets for each cohort (stage 1), and meta-analyses will be performed on the risk estimates (stage 2). CONCLUSION: PSY-CA aims to elucidate the relationship between psychosocial factors and cancer risk by addressing several shortcomings of prior meta-analyses.

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

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.

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

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.

Psychological outcomes, knowledge and preferences of pregnant women on first-trimester screening for fetal structural abnormalities: A prospective cohort study.

INTRODUCTION: The primary aim of this study is to investigate the impact of a 13-week anomaly scan on the experienced levels of maternal anxiety and well-being. Secondly, to explore women's knowledge on the possibilities and limitations of the scan and the preferred timing of screening for structural abnormalities. MATERIAL AND METHODS: In a prospective-cohort study conducted between 2013-2015, pregnant women in the North-Netherlands underwent a 13-week anomaly scan. Four online-questionnaires (Q1, Q2, Q3 and Q4) were completed before and after the 13- and the 20-week anomaly scans. In total, 1512 women consented to participate in the study and 1118 (74%) completed the questionnaires at Q1, 941 (64%) at Q2, 807 (55%) at Q3 and 535 (37%) at Q4. Psychological outcomes were measured by the state-trait inventory-scale (STAI), the patient's positive-negative affect (PANAS) and ad-hoc designed questionnaires. RESULTS: Nine-nine percent of women wished to be informed as early as possible in pregnancy about the absence/presence of structural abnormalities. In 87% of women levels of knowledge on the goals and limitations of the 13-week anomaly scan were moderate-to-high. In women with a normal 13-week scan result, anxiety levels decreased (P < .001) and well-being increased over time (P < .001). In women with false-positive results (n = 26), anxiety levels initially increased (STAI-Q1: 39.8 vs. STAI-Q2: 48.6, P = 0.025), but later decreased around the 20-week anomaly scan (STAI-Q3: 36.4 vs. STAI-Q4: 34.2, P = 0.36). CONCLUSIONS: The 13-week scan did not negatively impact the psychological well-being of pregnant women. The small number of women with screen-positive results temporarily experienced higher anxiety after the scan but, in false-positive cases, anxiety levels normalized again when the abnormality was not confirmed at follow-up scans. Finally, most pregnant women have moderate-to-high levels of knowledge and strongly prefer early screening for fetal structural abnormalities.

Patients and Medical Staff Attitudes Toward the Future Inclusion of eHealth in Tuberculosis Management: Perspectives From Six Countries Evaluated using a Qualitative Framework.

BACKGROUND: Digitally delivering healthcare services is very attractive for tuberculosis (TB) management as this disease has a complex diagnosis and lengthy management and involves multiple medical and nonmedical specialists. Especially in low- and middle-income countries, eHealth could potentially offer cost-effective solutions to bridge financial, social, time, and distance challenges. OBJECTIVE: The goal of the research is to understand what would make eHealth globally applicable and gain insight into different TB situations, opportunities, and challenges. METHODS: We performed focus group interviews with TB experts and patients from 6 different countries on 4 different continents. The focus group interviews followed the theory of planned behavior framework to offer structured recommendations for a versatile eHealth solution. The focus group interviews were preceded by a general demographic and technology use questionnaire. Questionnaire results were analyzed using basic statistics in Excel (Microsoft Corporation). Focus group interview data were analyzed using ATLAS.ti 8 (ATLAS.ti Scientific Software Development GmbH) by assigning codes to quotations and grouping codes into the 5 domains within the framework. RESULTS: A total of 29 patients and 32 medical staff members were included in our study. All medical staff had used the internet, whereas 31% (9/61) of patients had never been online. The codes with the most quotations were information in relation to eHealth (144 quotations) and communication (67 quotations). The consensus among all participants from all countries is that there are important communication and information gaps that could be bridged by an eHealth app. Participants from different countries also highlighted different challenges, such as a majority of asylum-seeker patients or lack of infrastructure that could be addressed with an eHealth app. CONCLUSIONS: Within the 6 countries interviewed, there is high enthusiasm toward eHealth in TB. A potential app could first target information and communication gaps in TB, with additional modules aimed at setting-specific challenges.

Cognitive and affective outcomes of genetic counselling in the Netherlands at group and individual level: a personalized approach seems necessary.

We performed a large outcome study at group and individual level in which the goals of genetic counselling were operationalized into cognitive and affective outcomes: empowerment, perceived personal control and anxiety. We then examined which socio-demographic and clinical variables were associated with changes in these outcomes. Data came from 1479 counselees who completed questionnaires (GCOS-18, PPC and STAI) at three time points: before the start of genetic counselling, after the first consultation and after the results of genetic counselling were disclosed. Results showed that at group level empowerment, perceived personal control and anxiety improved significantly after the whole genetic counselling process. Effect-sizes were medium for empowerment and small for the other outcomes. At individual level, 48% of counselees improved in empowerment, 21% in perceived personal control and 17% in anxiety. Around 10% of counselees worsened on all outcomes. Only 'reason for referral' and 'genetic test result' were significantly associated with changes in outcomes. This study demonstrated improvements among counselees in cognitive and affective outcomes after genetic counselling at group level. However, our results also suggest that there are opportunities for improvement at individual level, as many counselees remained stable and some even worsened on all outcomes. Routine outcome monitoring could help to explore the needs of counselees and could help to identify counselees who worsen.