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The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.

Objective

Psychosocial interventions can reduce cancer‐related fatigue effectively. However, it is still unclear if intervention effects differ across subgroups of patients. These meta‐analyses aimed at evaluating moderator effects of (a) sociodemographic characteristics, (b) clinical characteristics, (c) baseline levels of fatigue and other symptoms, and (d) intervention‐related characteristics on the effect of psychosocial interventions on cancer‐related fatigue in patients with non‐metastatic breast and prostate cancer.

Methods

Data were retrieved from the Predicting OptimaL cAncer RehabIlitation and Supportive care (POLARIS) consortium. Potential moderators were studied with meta‐analyses of pooled individual patient data from 14 randomized controlled trials through linear mixed‐effects models with interaction tests. The analyses were conducted separately in patients with breast (n = 1091) and prostate cancer (n = 1008).

Results

Statistically significant, small overall effects of psychosocial interventions on fatigue were found (breast cancer: β = −0.19 [95% confidence interval (95%CI) = −0.30; −0.08]; prostate cancer: β = −0.11 [95%CI = −0.21; −0.00]). In both patient groups, intervention effects did not differ significantly by sociodemographic or clinical characteristics, nor by baseline levels of fatigue or pain. For intervention‐related moderators (only tested among women with breast cancer), statistically significant larger effects were found for cognitive behavioral therapy as intervention strategy (β = −0.27 [95%CI = −0.40; −0.15]), fatigue‐specific interventions (β = −0.48 [95%CI = −0.79; −0.18]), and interventions that only targeted patients with clinically relevant fatigue (β = −0.85 [95%CI = −1.40; −0.30]).

Conclusions

Our findings did not provide evidence that any selected demographic or clinical characteristic, or baseline levels of fatigue or pain, moderated effects of psychosocial interventions on fatigue. A specific focus on decreasing fatigue seems beneficial for patients with breast cancer with clinically relevant fatigue.

Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient’s spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment.

Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. Methods: Focus groups were conducted with 15 informal caregivers and 13 healthcare professionals. Both informal caregivers and healthcare professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data.

Results: We investigated informal caregivers’ needs, critical factors for adoption, and desired functionalities of Carer eSupport.A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches.

Conclusions: This study provided an in-depth understanding of informal caregivers’ contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers’ well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful health interventions with a clear focus on users’ well-being and positive emotions, especially for informal caregivers of patients with HNC.

Porphyria cutanea tarda (PCT) requires long-term treatment and follow-up, although many patients experience life-long remission. The aim of this cross-sectional postal survey was to describe and investigate the association between illness perception, health complaints, self-reported symptoms and distress in persons with PCT. The participants perceived PCT as a chronic condition with high levels of personal and treatment control. Persons who reported active symptoms scored higher on perceived illness threat, total health complaints and psychological distress compared with those in remission or latent phases. However, a higher perception of illness threat and the total burden of health complaints were more closely associated with psychological distress than were perceived PCT symptoms activity. This has implications for clinical consultation; dermatologists should be attentive to symptoms activity, but also recognize that patients in remission with a high perceived illness threat and multiple health complaints might be especially vulnerable to psychological distress with regards to PCT.

PURPOSE: This study aimed to explore how patients with head and neck cancer experienced undergoing an (18)F-fluoro-deoxy-glucose positrons emissions tomography/computed tomography ((18)F-FDG PET/CT) examination in a fixation mask.

METHOD: Interviews were conducted with nine patients with known or suspected head and neck cancer who were scheduled for the examination for the first time. The phenomenological method according to van Manen and his four lifeworld existentials; lived space, lived body, lived time, and lived relation was used to analyse the interviews.

RESULTS: The thoughts and feelings of the patients during the PET/CT examination varied, some found it very difficult, while others did not. However, for all the patients, it was an experience that required some form of coping to maintain composure for example distraction.

CONCLUSIONS: PET/CT examnation in a fixation mask may be strenuous for some patients. Patients need more detailed information, including suggestions for coping behaviours, prior to the examination, as well as higher level of support during and after the examination. The results of this study may be used to improve patient care and optimize the procedure of PET/CT examination in a fixation mask.

Background Mental disorders are the most common reason for sick leave in Sweden. Knowledge about effective methods to help these individuals to return to work (RTW)/entry into work or studies is limited. Rehabilitation coordinators (RC's) have been introduced within healthcare with the purpose to promote cooperation, streamline the sick leave and rehabilitation process, and facilitate RTW for sick-listed patients. The function of RC's has shown positive results by reducing sick leave within primary healthcare. However, the function has not been evaluated in terms of specialist psychiatry. This paper describes the design of a study to evaluate effects of a RC intervention on sick leave and RTW/entry in work or studies in patients with moderate to severe affective and/or moderate to severe anxiety disorders within specialist psychiatric care. Methods A randomised controlled trial (RCT) comparing an intervention group receiving support from a RC with a control group receiving treatment as usual (TAU). The target group is patients on sick leave, treated for affective and/or anxiety disorder, aged 25-64, with or without employment. Discussion This study gives the possibility to evaluate a RC intervention for individuals with mental disorders. If the study has promising vocational outcomes, it may be of importance for the participants in many ways, e.g. increase participation in society, provide economic benefits and improve health and wellbeing. This would be valuable for the individual as well as for the society.

Background: The number of families conceived through sperm donation to single women is increasing. However, there is limited knowledge about health care professionals' attitudes towards solo-mothers by choice, and there is some indication that professionals' personal opinions influence their care of individuals who use alternate ways to build a family. The primary aim of the study was to investigate attitudes towards, and experiences of, families following sperm donation to single women among healthcare professionals working in primary child healthcare.

Methods: Between April and November 2016 a total of 712 physicians, registered nurses and psychologists working within primary healthcare in Sweden were invited to participate in a cross-sectional online survey study. The study-specific questionnaire contained the following four domains: Attitudes towards legalization and financing, Attitudes towards the family and the child's health, Clinical experience and Knowledge about sperm donation to single women.

Results: The majority of the participants were positive or neutral towards sperm donation being allowed to single women in Sweden. However, one third believed that children risk worse mental health and social stigma. Half of healthcare professionals had own clinical experience of caring for solo-mothers by choice and their children, and of these one third perceived that these families had more need of support than other parents. One out of four indicated that they did not have sufficient knowledge to be able to provide adequate care to these families.

Conclusions: The present results indicate that while there was a relatively large support for sperm donation being allowed to single women in Sweden among health care professionals, many expressed concerns about the child's health, as well as low confidence in their knowledge about the specific needs in this patient group. There is a need for educational interventions targeted to healthcare professionals in primary child healthcare in order to provide adequate care to solo-mothers by choice and their children.

OBJECTIVE: To evaluate the effects of an individual stepped-care stress-management intervention for cancer patients on cancer-related stress reactions (intrusion/avoidance), and secondarily on psychological distress (anxiety/depression) and emotional reactivity (impatience/hostility).

METHODS: Consecutively 291 cancer patients were included in a randomized controlled intervention study. Patients randomized to the intervention who did not report clinically significant stress levels (n = 72) after the first counseling session participated in only one counseling session and a follow-up (Step 1). The remaining patients (n = 66) received an additional three to eight sessions, depending on individual needs (Step 2). The intervention used techniques derived from cognitive behavioral therapy (CBT) such as daily registration of events and behaviors as well as scheduled behavioral and physical activity, along with short relaxation exercises. The intervention was completed within 26 weeks of inclusion. The Impact of Event Scale, Hospital Anxiety and Depression Scale, and Everyday Life Stress Scale were used to evaluate effects for 2 years.

RESULTS: The linear mixed effects model analysis showed a difference between the randomization groups in favor of the intervention for avoidance and intrusion after the first 6 weeks (P = 0.001 and P = 0.003) and for emotional reactivity after 17 weeks (P = 0.007). There were no differences in psychological distress. Decreases in cancer-related stress reactions and depression were noted for the Step 2 intervention.

CONCLUSIONS: An individual stepped-care stress-management intervention for cancer patients, performed by specially educated health professionals using techniques derived from CBT, seems beneficial for cancer patients and may therefore be a realistic complement to routine cancer care.

BACKGROUND: Cost-effectiveness is important in the prioritisation between interventions in health care. Exercise is cost-effective compared to usual care during oncological treatment; however, the significance of exercise intensity to the cost-effectiveness is unclear. In the present study, we aimed to evaluate the long-term cost-effectiveness of the randomised controlled trial Phys-Can, a six-month exercise programme of high (HI) or low-to-moderate intensity (LMI) during (neo)adjuvant oncological treatment.

METHODS: A cost-effectiveness analysis was performed, based on 189 participants with breast, colorectal, or prostate cancer (HI: n = 99 and LMI: n = 90) from the Phys-Can RCT in Sweden. Costs were estimated from a societal perspective, and included cost of the exercise intervention, health care utilisation and productivity loss. Health outcomes were assessed as quality-adjusted life-years (QALYs), using EQ-5D-5L at baseline, post intervention and 12 months after the completion of the intervention.

RESULTS: At 12-month follow-up after the intervention, the total cost per participant did not differ significantly between HI (€27,314) and LMI exercise (€29,788). There was no significant difference in health outcome between the intensity groups. On average HI generated 1.190 QALYs and LMI 1.185 QALYs. The mean incremental cost-effectiveness ratio indicated that HI was cost effective compared with LMI, but the uncertainty was large.

CONCLUSIONS: We conclude that HI and LMI exercise have similar costs and effects during oncological treatment. Hence, based on cost-effectiveness, we suggest that decision makers and clinicians can consider implementing both HI and LMI exercise programmes and recommend either intensity to the patients with cancer during oncological treatment to facilitate improvement of health.

BACKGROUND: Exercise during oncological treatment is beneficial to patient health and can counteract the side effects of treatment. Knowledge of the societal costs associated with an exercise intervention, however, is limited. The aims of the present study were to evaluate the long-term resource utilisation and societal costs of an exercise intervention conducted during (neo)adjuvant oncological treatment in a randomised control trial (RCT) versus usual care (UC), and to compare high-intensity (HI) versus low-to-moderate intensity (LMI) exercise in the RCT.

METHODS: We used data from the Physical Training and Cancer (Phys-Can) project. In the RCT, 577 participants were randomised to HI or to LMI of combined endurance and resistance training for 6 months, during oncological treatment. The project also included 89 participants with UC in a longitudinal observational study. We measured at baseline and after 18 months. Resource utilisation and costs of the exercise intervention, health care, and productivity loss were compared using analyses of covariance (RCT vs. UC) and t test (HI vs. LMI).

RESULTS: Complete data were available for 619 participants (RCT HI: n = 269, LMI: n = 265, and UC: n = 85). We found no difference in total societal costs between the exercise intervention groups in the RCT and UC. However, participants in the RCT had lower rates of disability pension days (p < .001), corresponding costs (p = .001), and pharmacy costs (p = .018) than the UC group. Nor did we find differences in resource utilisation or costs between HI and LMI exercise int the RCT.

CONCLUSION: Our study showed no difference in total societal costs between the comprehensive exercise intervention and UC or between the exercise intensities. This suggests that exercise, with its well-documented health benefits during oncological treatment, produces neither additional costs nor savings.

PURPOSE: Impaired functioning due to cancer treatment is a challenge for daily life. Exercise during treatment can improve functioning. However, research describing experiences of how exercise affects activities of daily life is limited. We aimed to explore how individuals with cancer receiving curative treatment and participating in an exercise intervention experienced their functioning in daily life.

METHODS: Twenty-one participants were recruited from Phys-Can, an exercise intervention study. Semi-structured interviews were conducted after the intervention had finished, and data was analysed using thematic analysis.

RESULTS: Two main themes evolved: "Striving to maintain a normal life in a new context" and "Struggling with impairments from side effects of cancer treatment". The supervised group exercise proved popular, and participants reported positive effects on physical and psychological functioning, as well as social and informative support from other participants. Participants struggled with impaired cognitive and physical functioning and exhaustion. They strove to maintain a normal life by adjusting their activities.

CONCLUSIONS: Perceived physical and psychological benefits from exercise during cancer treatment suggest that exercise should be a part of cancer rehabilitation to facilitate activities and participation in daily life. Striving to maintain a normal life during cancer treatment is vital, and adjustments are needed to maintain activities and participation in daily life. Cancer nurses should motivate patients to engage in physical activity and encourage the introduction of exercise as part of their rehabilitation. They could also support patients in making adjustments to maintain functioning in daily life.

PURPOSE: This study aimed to evaluate the effect of high intensity (HI) vs low-to-moderate intensity (LMI) exercise on health-related quality of life (HRQoL) up to 18 months after commencement of oncological treatment in patients with breast, colorectal or prostate cancer. In addition, we conducted a comparison with usual care (UC).

METHODS: Patients scheduled for (neo)adjuvant oncological treatment (n = 577) were randomly assigned to 6 months of combined resistance and endurance training of HI or LMI. A longitudinal descriptive study (UC) included participants (n = 89) immediately before the RCT started. HRQoL was assessed by EORTC QLQ-C30 at baseline, 3, 6 and 18 months (1 year after completed exercise intervention) follow-up. Linear mixed models were used to study the groups over time.

RESULTS: Directly after the intervention, HI scored significant (P = 0.02), but not clinically relevant, higher pain compared with LMI. No other significant difference in HRQoL was found between the exercise intensities over time. Clinically meaningful improvements in HRQoL over time were detected within both exercise intensities. We found favourable significant differences in HRQoL in both exercise intensities compared with UC over time.

CONCLUSION: This study adds to the strong evidence of positive effect of exercise and shows that exercise, regardless of intensity, can have beneficial effects on HRQoL during oncological treatment and also for a substantial time after completion of an exercise intervention. In this study, for one year after.

IMPLICATIONS FOR CANCER SURVIVORS: Patients can be advised to exercise at either intensity level according to their personal preferences, and still benefit from both short-term and long-term improvements in HRQoL.

Introduction: Short sleep and workplace stress are both established risk factors for overweight and obesity, yet few studies have considered how these two factors may intersect. The aim of this study was to establish the associations between these two exposures and their relative associations with body mass index (kg/m2 ) and waist circumference (cm).

Methods: A cross-sectional design sampled current employees (N=423) from an Australian cohort using a computer-assisted telephone interview and clinic-measured height, weight, and waist circumference. Short sleep (≤6h/ night) was reported by 25.8% of the participants. Psychosocial work stressors were defined using the Job Demand-ControlSupport (JDCS) model and calculated at the subscale level (psychological demands; skill discretion; decision authority; coworker support; supervisor support). General linear models were used to assess associations between short sleep, the JDCS subscales (split at median), and BMI and waist circumference.

Results: Separate analyses identified short sleep and a lack of skill discretion at work as predictors of both BMI and waist circumference. Furthermore, when both predictors were entered in the same model, each was associated with elevated BMI (b=1.79, p=.003; b=1.08, p=.045) and waist circumference (b=4.20, p=.005; b=2.97, p=.028). Short sleep was also associated with high perceived psychological demands at work (b=1.81, p=.003). All models were adjusted for gender, age, work hours, blue vs. white collar job, and household income.

Discussion: These findings indicate the importance of considering the interplay between short sleep and psychosocial work stressors, and their respective associations with measures of overweight Sleep Sci. 2019;12(Supl.3):1-75 26 and obesity. Further research using longitudinal data is needed to model potential mechanisms (e.g., behavioral and physiological). A novel feature was the subscale consideration of the prominent JDCS model of work stress. Advocacy for both improved habitual sleep (e.g., ≥7h/night) and job redesign to increase skill discretion at work may promote lower levels of overweight and obesity for employees.

Aim: This study examined whether development of psychological symptoms (PS) differed between persons with different longitudinal profiles of heavy episodic drinking (HED) from adolescence to midlife. In addition, the reciprocal associations between PS and HED were studied. Methods: Participants of a Finnish cohort study in 1983 at age 16 (N = 2194) were followed up at ages 22 (N = 1656), 32 (N = 1471), and 42 (N = 1334). HED was assessed with frequency of intoxication (16-22 years) and having six or more drinks in a session (32-42 years). Using latent class analysis, the participants were allocated to steady high, increased, moderate, and steady low groups according to their longitudinal profiles of HED. The PS scale (16-42 years) covered five mental complaints. The latent growth curve of PS was estimated in the HED groups for comparisons. In addition, the prospective associations between symptoms and HED were examined using cross-lagged autoregressive models. Results: PS grew from 16 to 32 years, but declined after that, with women having higher level of PS than men. PS trajectory followed a path at highest and lowest level in the steady high and steady low HED groups, respectively. Symptoms predicted later HED, but the association in the opposite direction was not found. Conclusions: The more the HED trajectory indicated frequent HED, the higher was the level of PS throughout the follow-up. Results support the self-medication hypothesis, suggesting that alcohol is used to ease the burden of PS. More attention should be paid to alcohol use of people with mental symptoms in health services.

Purpose This cohort profile describes the Stress, development and mental health study (TAM), which is a cohort study investigating risk and protective factors as well as longitudinal associations regarding mental health and well-being from adolescence to midlife. This interdisciplinary cohort study operates, for example, in the fields of public health, social medicine, psychiatry and the life course perspective.

Participants In 1981 (n=2242, 98.0% of the target population), 1982 (n=2191, 95.6%) and 1983 (n=2194, 96.7%) during school classes, surveys were conducted to all Finnish-speaking pupils (mostly born 1967) in the Tampere region in Finland. Participants of the school study at age 16 in 1983 (n=2194) comprised the base population for the longitudinal data and were followed-up using postal questionnaires in the years 1989, 1999, 2009 and 2019 at ages 22 (n=1656, 75.5% of the age 16 participants), 32 (n=1471, 67.0%), 42 (n=1334, 60.8%) and 52 (n=1160, 52.9%).

Findings to date The self-reported questionnaires include information on physical and mental health (eg, depression and mood disorders, anxiety disorders), health behaviour and substance misuse (eg, alcohol, tobacco and exercise), socioeconomic conditions, psychosocial resources (eg, self-esteem), social relationships and support, life events, etc. The numerous studies published to date have examined mental health and various factors from several perspectives such as risk and protective factors, individual developmental paths (eg, trajectories) and pathway models (mediation and moderation).

Future plans Current and future research areas include, for example, longitudinal associations between mental health (eg, depressive symptoms, self-esteem) and (1) substance use (alcohol and tobacco), (2) family transitions (eg, parenthood, relationship status) and (3) retirement. Next follow-up is planned to be conducted at the latest at age 62 in 2029. Before that it is possible to link the data with cause-of-death register.

Background

The school context is associated with adolescent alcohol use, but it is not clear whether this association continues into adulthood. This study examined whether exposure to drunkenness oriented drinking culture in 9th grade school class is associated with individuals’ heavy episodic drinking (HED) from adolescence to midlife.

Methods

Participants in the ‘Northern Swedish Cohort’ study aged 16 years in 1981 were followed-up when aged 18, 21, 30 and 43 (N = 1080). Individual-level factors were HED, positive attitudes towards drunkenness, early initiation of HED and peer-oriented spare-time. School class-level drinking culture was measured as classmate reported HED, positive attitudes, early initiation of HED and peer-oriented spare time. Multilevel log-binomial regression analyses were adjusted for gender, parental socioeconomic background, family structure and HED at age 16.

Results

After adjustment for sociodemographic factors several cross-sectional and longitudinal associations were found between class-level indicators of drinking culture and individual HED. After additional adjustment for age 16 HED, most associations attenuated. The risk ratio (95% confidence interval) for engaging in HED at age 43 was 1.58 (1.03–2.42) times higher for those who at age 16 had many classmates reporting positive attitude towards drunkenness.

Conclusions

These findings suggest that drinking culture in school may have a long-lasting impact on drinking habits in adulthood. The associations with HED at follow-ups are likely mediated by HED in adolescence. Studies on alcohol use would benefit from taking into account both individual and contextual factors in a life course perspective.

Background: The aim of this study is to examine the relevance of macroeconomic conditions (boom vs. recession) and own labor market status on alcohol use in youth and midlife.

Method: Two Northern Swedish cohorts, born in either 1965 (boom at age 21 years) or 1973 (recession at age 21 years), included all pupils attending the last grade of compulsory school in Luleå, in 1981 (n = 990) or 1989 (n = 686), respectively. Questionnaires were completed at ages 21 and 43/39 years. Alcohol use was measured as volume of consumption (cl/year) and heavy episodic drinking (HED).

Results: Women aged 21 years during the boom (Cohort65) consumed less alcohol and were less likely to be heavy episodic drinkers at age 21 years compared to those who were exposed to recession at the same age (Cohort73). In men there were no such cohort differences. Women, and to some extent men, in Cohort65 increased their consumption at midlife, whereas this decreased for those in Cohort73. HED decreased in both cohorts, but the decrease was steeper in the recession cohort. Analyses stratified by labor market status revealed between-cohort differences in consumption among women who were either employed or students at baseline; but not for men. Alcohol use for those unemployed did not differ between the cohorts.

Conclusions: In our study, comparing two cohorts that experienced either macroeconomic boom (1986) or recession (1994) at age 21 years in Sweden, the association between individual alcohol use and concurrent unemployment in youth was not affected by macroeconomic conditions.