Explaining the complex impact of the Covid-19 pandemic on children with overweight and obesity: a comparative ecological analysis of parents' perceptions in three countries.

BACKGROUND: The Covid-19 pandemic has changed children's eating and physical activity behaviours. These changes have been positive for some households and negative for others, revealing health inequalities that have ramifications for childhood obesity. This study investigates the pandemic's impact on families of children aged 2-6 years with overweight or obesity. METHODS: Drawing on interviews conducted as part of a randomised controlled trial (RCT) for childhood obesity, thematic analysis was used to examine how parents of pre-schoolers perceived changes in their eating, screentime and physical activity behaviours between the first and second waves of Covid-19. Parents (n = 70, representing 68 families) were interviewed twice during a period of 6 months in three countries with markedly different pandemic policies - Sweden, Romania, and Spain. The analysis is informed by Bronfenbrenner's ecological systems theory, which embeds home- and school-based influences within societal and policy contexts. RESULTS: The findings show that, although all participants were recruited from an RCT for families of children with excess weight, they reported different responses to the pandemic's second wave, with some children engaging in healthier eating and physical activity, and others engaging in comfort eating and a more sedentary lifestyle. Differences in children's obesity-related behaviours were closely related to differences in parents' practices, which were, in turn, linked to their emotional and social wellbeing. Notably, across all sites, parents' feeding and physical activity facilitation practices, as well as their emotional and social wellbeing, were embedded in household resilience. In resilient households, where parents had secure housing and employment, they were better able to adapt to the challenges posed by the pandemic, whereas parents who experienced household insecurity found it more difficult to cope. CONCLUSIONS: As the Covid-19 pandemic is turning into a long-term public health challenge, studies that address household resilience are crucial for developing effective prevention and treatment responses to childhood obesity.

A prospective study of quality of life in amyotrophic lateral sclerosis patients.

OBJECTS: The aim of this prospective and longitudinal study was to describe individual quality of life in patients with amyotrophic lateral sclerosis (ALS) and its correlations with physical function and emotional well-being from diagnosis and over time. MATERIALS AND METHODS: Thirty-six patients were included in the study. Individual quality of life was measured with the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), illness severity was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R), and emotional distress was measured using the Hospital Anxiety and Depression Scale (HADS). Data were collected from diagnosis and thereafter, every six months for a period of two years. Twelve patients completed the 24-month follow-up. RESULTS: Family, friends and own physical health were important for overall quality of life, from diagnosis and during the disease progression. Most patients had good quality of life, which remained stable, despite changed physical functions. Several patients scored above the cut-off score for doubtful and clinical anxiety and depression early on after diagnosis, and there was a significant decrease in anxiety over time. Soon after diagnosis, there was a correlation between depression and quality of life. CONCLUSION: The family, social relations and own physical health are important for overall quality of life in patients with ALS. Thus, supporting the family and facilitating so that patients can continue to stay in contact with friends are important aspects during the disease. Conducting an early screening for depression can be important for preventing decreased quality of life.

Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials.

While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials.

It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.

How to handle genetic information: a comparison of attitudes among patients and the general population.

BACKGROUND: So far there are no studies comparing the attitudes of patients with hereditary conditions to the attitudes of the general public on how to handle genetic risk information which mutation carriers refuse to disclose to relevant family members. The purpose of the present study was to investigate whether such patients and members of the general public want to be informed about the existence of hereditary conditions within their family, and under which conditions they want healthcare providers to breach confidentiality. METHODS: It was hypothesized that the desire to be informed would be influenced by characteristics of both the disease and the individual. Systematically varying 3 disease characteristics (fatality, penetrance and treatment availability) yielded 8 versions of a questionnaire, which was administered to general population samples in Norway and Sweden (N = 3,207) and to patient samples in both countries (N = 822). Individual differences in uncertainty avoidance, coping style and consideration for future consequences were also assessed. RESULTS AND CONCLUSION: A majority of both patients and the general public want to be informed about the existence of hereditary conditions within their family. However, patients are more positive towards being informed, both with and without the relative's consent, than the general public. The main predictor of the desire to be informed was uncertainty avoidance in both samples.

Expectations for the recovery period after cancer treatment--a qualitative study.

The aim was to explore what expectations patients have concerning the recovery period after completed curative cancer treatment and the degree to which these expectations were realized slightly more than 1 year later. A purposeful sample of 16 patients was selected from a larger study and those patients were interviewed 16 months after treatment completion. The interviews were analysed using the phenomenographic method. Patients' expectation for their recovery period was generally to become well, but they often lacked plans for how to recover. If the recovery period was perceived as 'smooth' expectations were always met. However, if the period was perceived as 'tough' expectations were often unfulfilled, but most of these patients were satisfied with their current life anyway owing to positive changes and it was only a small proportion of the patients that still felt unwell. Even though most of the patients had managed to adjust well to the situation slightly more than 1 year after completed treatment, several patients had not been aware of how tough recovery could be and requested further support from the healthcare system.

Quality of life in patients with multiple endocrine neoplasia type 1 (MEN 1).

To study quality of life among patients living with a hereditary tumor syndrome, the small group with multiple endocrine neoplasia type 1 (MEN1) was selected. It is characterized by multifocal adenomas of the pancreas, parathyroid, anterior pituitary and other endocrine glands. Patients were assessed at an in-hospital stay and six months later at home. Patients at a specialist ward for MEN1 were recruited consecutively (n = 36) during one year. Eighty-one percent participated (n = 29). Four questionnaires were used: the Hospital Anxiety and Depression Scale (HADS), the Impact of Event Scale (IES), the Life Orientation Test (LOT) and the Short Form-36 (SF-36). Psychosocial outcome measures (anxiety, depression, intrusion, avoidance) changed only marginally between the in hospital stay and six months later at home. However, depression increased for patients categorized as having a high burden of disease and treatment. Compared to population-based norm values, the SF-36 scores of the patient group MEN1were lower for General Health and Social Functioning. Optimism assessed at the hospital was a predictor of Mental Health six months later. Most MEN 1 patients (70%) were pessimists. Patients having a higher burden of disease and treatment are in need of support after discharge. Patients could easily be monitored with questionnaires and, when indicated, offered help for their psychosocial distress.

A group-based patient education programme for high-anxiety patients with Crohn disease or ulcerative colitis.

BACKGROUND: The inflammatory bowel diseases (IBD) ulcerative colitis (UC) and Crohn disease (CD) affect a person's health-related quality of life (HRQOL). IBD patients report high levels of anxiety, which correlates with the degree of perceived dissatisfaction with the information on disease-related themes provided in routine health care. The aim of this study was to evaluate changes in anxiety after participation in a group-based educational intervention for IBD patients screened for high anxiety. METHODS: The programme consisted of 8 sessions, and 49 patients participated. Anxiety was assessed using the Hospital Anxiety and Depression (HAD) Scale at baseline and 6 months after intervention. HRQOL was assessed with the Inflammatory Bowel Disease Questionnaire (IBDQ) and the SF-36 health survey. Participant satisfaction with education was measured using a study-specific questionnaire. RESULTS: No significant change on the HAD anxiety score was found at the 6-month follow-up for those who participated in the education programme despite the fact that the participants reported they had gained better knowledge of disease-related items. Furthermore, there were no significant changes over time regarding bowel symptoms, systemic symptoms, emotional functioning and social functioning of the IBDQ or generic HRQOL (SF-36). CONCLUSIONS: IBD patients with a high anxiety level reported improved satisfaction with information about disease-related items, but did not indicate any benefits in terms of reduced anxiety or improved HRQOL after participating in the education programme, not at least in the short-term perspective. In this selected group of patients, psychosocial problems other than disease-related concerns were found that warrant other approaches.

Health-related quality of life and psychological distress in a population-based sample of Swedish patients with inflammatory bowel disease.

BACKGROUND: The chronicity of inflammatory bowel disease (IBD) and effects of medical and surgical treatments probably affect the daily lives of patients and may thus impair their health-related quality of life and psychological well-being. METHODS: Health-related quality of life and psychological distress were investigated in a population-based Swedish sample of patients with IBD. A total of 492 patients, 331 with ulcerative colitis (UC) and 161 with Crohn disease (CD), filled out the Short Form-36 (SF-36), the Inflammatory Bowel Disease Questionnaire (IBDQ) and the Hospital Anxiety and Depression (HAD) scale. RESULTS: Patients with UC reported higher (superior) levels in all dimensions of health-related and disease-specific quality of life than did patients with CD. CONCLUSIONS: Having an ileostomy does not seem to affect patients' quality of life, while having ileoanal anastomosis appears to reduce patients' quality of life in several of the dimensions assessed. CD patients reported more anxiety and depression than did patients with UC. The higher psychological distress in the CD group could be explained by more severe symptoms of the disease. Having ileoanal anastomosis may lead to more anxiety and depression, while having an ileostomy does not.

Discrepancies between attainment and importance of life values and anxiety and depression in gastrointestinal cancer patients and their spouses.

Patients' satisfaction with life, viewed in terms of the discrepancy between the perceived attainment and subjective importance of various life values, is a less often studied phenomenon for understanding the psychological adaptation in cancer patients. The main aim of the present study is to investigate the relation between the degree of attainment and importance of life values on the one hand, and anxiety and depression, on the other. A consecutive series of 85 newly diagnosed patients with gastrointestinal (GI) cancers, 52 potentially cured and 33 with an advanced disease, and 26 spouses to the patients with an advanced disease participated. The patients and spouses of non-cured patients filled out questionnaires twice, close to the diagnosis and after 1 (non-cured patients) or 3 months. Overall, large discrepancies between the perceived attainment and importance of life values were associated with high anxiety and depression. For the patients (both cured and non-cured), the discrepancies decreased for several life values over time, as did anxiety and depression. For the spouses of the non-cured patients, there was no decrease either for life value discrepancies or for anxiety/depression. This suggests that patients, in contrast to their spouses, strive to achieve small discrepancies between the perceived attainment and importance of life values, as part of their adjustment to serious diseases, e.g. cancer.

Alternative methods of interpreting quality of life data in advanced gastrointestinal cancer patients.

Understanding of how to analyse and interpret quality of life (QoL) data from clinical trials in patients with advanced cancer is limited. In order to increase the knowledge about the possibilities of drawing conclusions from QoL data of these patients, data from 2 trials were reanalysed. A total of 113 patients with pancreatic, biliary or gastric cancer were included in 2 randomised trials comparing chemotherapy and best supportive care (BSC) with BSC alone. Patient benefit was evaluated by the treating physician (subjective response) and by using selected scales and different summary measures of the EORTC QLQ-C30 questionnaire. An increasing number of drop-outs (mainly due to death) with time did not occur in a random fashion. Therefore, the mean scores in the different subscales of the QLQ-C30 obtained during the follow-up of interviewed patients did not reflect the outcome of the randomised population. The scores of the patient-provided summary measure, 'Global health status/QoL', were stable in a rather high proportion of the patients and could not discriminate between the 2 groups. 3 other summary measures revealed greater variability, and they all discriminated between the 2 groups. A high agreement was also seen between the changes in the summary measures and the subjective response. A categorisation of whether an individual patient had benefited or not from the intervention could overcome the problem with the selective attrition.

Predicting anxiety and depression among cancer patients: a clinical model.

The aim of this study was to investigate the possibility of predicting anxiety and depression 6 months after the cancer diagnosis on the basis of measures of anxiety, depression (Hospital Anxiety and Depression, HAD scale), subjective distress (Impact of Event, IES scale) and some aspects of social support in connection with the diagnosis. A further purpose was to attempt identification of individual patients at risk of prolonged psychological distress, and to develop an easily applicable clinical tool for such detection. A consecutive population-based series of 522 newly diagnosed patients with breast, colorectal, gastric and prostate cancer were interviewed in connection with the diagnosis and 6 months later. Anxiety and depression close to the diagnosis explained 39% of the variance in anxiety and depression 6 months later. Patients scoring as doubtful cases/cases for HAD anxiety and/or depression were more than 11 times more likely than non-cases to score as doubtful cases/cases at 6 months. Additional risk factors were having an advanced disease and nobody in addition to the family to rely on in case of difficulties. Levels of anxiety and depression at diagnosis predict a similar status 6 months later. The results also indicate that the HAD scale in combination with a single question about social support may be a suitable screening tool for clinical use.

The Mental Adjustment to Cancer Scale--a psychometric analysis and the concept of coping.

A psychometric analysis of the Mental Adjustment to Cancer (MAC) scale was performed in a heterogeneous Swedish sample of cancer patients (n = 868). The homogeneity of the original subscales proved to be satisfactory (alpha coefficients 0.61-0.81). The sample was randomly split into two subgroups, and a factor analysis was carried out in one of them using the LISREL 8.20 procedure. This yielded four factors called 'Hopeless', 'Positive', 'Anxious' and 'Avoidant' including 28 of the 40 original items (alpha coefficients 0.58-0.81). The novel factor structure was cross-validated and confirmed in the second subgroup. In contrast to the original scale (one item), 'Avoidance', was indexed by three items. The distinction between mental adjustment and coping is discussed. It is concluded that both versions of the MAC scale are measures of mental adjustment including emotional reactions as well as coping.

Predicting delayed anxiety and depression in patients with gastrointestinal cancer.

The aim of this study was to examine the possibility of predicting anxiety and depression 6 months after a cancer diagnosis on the basis of measures of anxiety, depression, coping and subjective distress associated with the diagnosis and to explore the possibility of identifying individual patients with high levels of delayed anxiety and depression associated with the diagnosis. A consecutive series of 159 patients with gastrointestinal cancer were interviewed in connection with the diagnosis, 3 months (non-cured patients only) and 6 months later. The interviews utilized structured questionnaires assessing anxiety and depression [Hospital Anxiety and Depression (HAD) scale], coping [Mental Adjustment to Cancer (MAC) scale] and subjective distress [Impact of Event (IES) scale]. Patient anxiety and depression close to the diagnosis were found to explain approximately 35% of the variance in anxiety and depression that was found 6 months later. The addition of coping and subjective distress measures did little to improve that prediction. A model using (standardized) cut-off scores of moderate to high anxiety, depression (HAD) and intrusive thoughts (IES subscale) close to the diagnosis to identify patients at risk for delayed anxiety and depression achieved a sensitivity of 75% and a specificity of 98%. Levels of anxiety and depression at diagnosis predicted a similar status 6 months later. The results also indicated that the HAD scale in combination with the IES intrusion subscale may be used as a tool for detecting patients at risk of delayed anxiety and depression.

Reactions to gastrointestinal cancer--variation in mental adjustment and emotional well-being over time in patients with different prognoses.

The relation between mental adjustment, often referred to as coping strategies, and emotional well-being and their changes over time were studied in 139 consecutive, newly diagnosed gastrointestinal cancer patients. Sixty-six patients were potentially cured since all known disease could be removed by surgery, whereas in 73 patients, this was not possible. A more confronting reaction to the diagnosis was associated with better emotional well-being whereas avoidance of reminders of, and intrusive thoughts about the disease were associated with more distress. In agreement with other studies, we found that the coping strategy 'Fighting Spirit' was associated with better emotional well-being while the reverse was true for the strategies 'Hopeless/Helplessness' and 'Anxious Preoccupation'. There were only minor changes over time in the average values of emotional well-being and coping strategies, particularly among patients who at diagnosis were considered incurable. In analyses of each individual's changes of predominant coping style and whether they were categorized as cases/doubtful cases on the HAD anxiety and depression scale, marked changes were, however, seen in several patients. The analyses of mean values give an impression of stability, whereas analyses of the number of patients with a specific predominant coping strategy and how they change, give another. The question of whether coping strategies and emotional well-being change through the course of the disease has no simple and obvious answer. Whether some of the investigated coping strategies should be conceptualized in terms of coping, or whether they are an outcome of the coping efforts, are discussed.

Psychological reactions in newly diagnosed gastrointestinal cancer patients.

Reactions to diagnosis, coping strategies, and anxiety and depression were prospectively studied in 139 consecutive, newly diagnosed gastrointestinal cancer patients. The reactions varied between diagnoses (colon, rectum, gastric, pancreatic and biliary) and states of illness (cured non-cured). Colon and rectal cancer patients, most of whom were potentially cured, had a more confrontational attitude towards their diagnosis, reported more 'Fighting Spirit' and less 'Anxious Preoccupation' and 'Hopeless/Helplessness'. Non-cured patients reported higher levels of intrusive thoughts and avoidance of aversive thoughts than cured patients. The overall levels of anxiety and depression were low, although higher levels were seen for non-cured patients. On the Hospital Anxiety and Depression scale (HAD), a total of 17% were scored as 'doubtful cases' or 'cases' on the anxiety scale and 21% on the depression scale. Thus, pancreatic/biliary cancer patients, most of which are non-cured, and to some extent those with gastric cancer are more vulnerable to psychological distress in connection with the diagnosis than are colorectal cancer patients.

Anxiety, depression and worry in gastrointestinal cancer patients attending medical follow-up control visits.

Anxiety, depression and worry were assessed in 141 consecutive gastrointestinal cancer patients scheduled for follow-up control visits. Participants completed two questionnaires, one including the Hospital Anxiety and Depression Scale (HAD) in conjunction with the visit and one completed after. The overall levels of anxiety before, during and after the visit were low. There were no differences between those who were considered cured and those who were not. Anxiety levels after the visit were higher for those patients for whom less than one year had passed since diagnosis. Mean HAD scores for anxiety and depression were 4.2 and 4.3 respectively. Women reported a higher degree of anxiety than men. Using a score of 8 or more for 'borderline-possible cases', 15% fell into these categories on the anxiety scale and 12% on the depression scale. About 30% of the patients worried about seeing a new physician and 25% about what the examination or tests would show. It is concluded that regular, scheduled control visits pose a significant threat to the psychological well-being of only a minority of gastrointestinal cancer patients.

Differential expression of two related, low-temperature-induced genes in Arabidopsis thaliana (L.) Heynh.

Plant cold acclimation is correlated to expression of low-temperature-induced (lti) genes. By using a previously characterized lti cDNA clone as a probe we isolated a genomic fragment that carried two closely located lti genes of Arabidopsis thaliana. The genes were structurally related with the coding regions interrupted by three similarly located short introns and were transcribed in the same direction. The nucleotide sequences of the two genes, lti78 and lti65, predict novel hydrophilic polypeptides with molecular weights of 77,856 and 64,510, respectively, lti78 corresponding to the cDNA probe. Of the 710 amino acids of LTI78 and 600 amino acids of LTI65, 346 amino acids were identical between the polypeptides, which suggests that the genes may have a common origin. Both lti78 and lti65 were induced by low temperature, exogenous abscisic acid (ABA) and drought, but the responsiveness of the genes to these stimuli was markedly different. Both the levels and the temporal pattern of expression differed between the genes. Expression of lti78 was mainly responsive to low temperature, that of lti65 to drought and ABA. In contrast to the induction of lti78, which follows separate signal pathways during low-temperature, ABA and drought treatment, the drought induction of lti65 is ABA-dependent and the low-temperature induction appears to be coupled to the ABA biosynthetic pathway. This differential expression of two related genes may indicate that they have somewhat different roles in the stress response.