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Objective: To evaluate the effect of intrusive thoughts at diagnosis on quality of life, depressed mood and waking up with anxiety up to two years after radical prostatectomy. Method: The Laparoscopic Prostatectomy Robot Open (LAPPRO) trial was a prospective, longitudinal multicenter study of 4003 patients undergoing radical prostatectomy. Questionnaire data were collected preoperatively, at 3, 12 and 24 months after surgery. Results: The group of patients with intrusive thoughts at diagnosis had a statistically significant higher postoperative prevalence of impaired quality of life, depressed mood and waking up with anxiety as compared with the group of patients with no or minor intrusive thoughts. The highest risk increase for impaired QoL, depressed mood and waking up with anxiety ≥1/week was at 12, 3 and 3 months, respectively, where the three outcomes increased by 38% (RR: 1.38; 95%CI: 1.27-1.49)), 136% (RR: 2.36; 95%CI: 1.74-3.19)) and 165% (RR: 2.65; 95%CI: 2.22-3.17)), respectively. Conclusions: The demonstrated link between intrusive thoughts and quality of life, depressed mood and waking up with anxiety deliver is further evidence to the idea that intrusive thoughts has potential as an endpoint for assessing and predicting psychological distress among men with prostate cancer diagnosis. Trial registration number: ISRCTN06393679 (www.isrctn.com). Date of registration: 07/02/2008. Retrospectively registered.

Background: We were interested in examining if there was a link between self-assessed emotional shock by prostate cancer diagnosis and psychological well-being at 3, 12, and 24 months after surgery., Material and Methods: Information was derived from patients participating in the LAPAroscopic Prostatectomy Robot Open (LAPPRO) trial, Sweden. We analyzed the association between self-assessed emotional shock upon diagnosis and psychological well-being by calculating odds ratios (ORs)., Results: A total of 2426 patients (75%) reported self-assessed emotional shock by the prostate cancer diagnosis. Median age of study participants was 63. There was an association between emotional shock and low psychological well-being after surgery: adjusted OR 1.7: (95% confidence interval [CI]), 1.4-2.1 at 3 months; adjusted OR 1.3: CI, 1.1-1.7 at 12 months, and adjusted OR 1.4: CI, 1.1-1.8 at 24 months. Among self-assessed emotionally shocked patients, low self-esteem, anxiety, and having no one to confide in were factors more strongly related with low psychological well-being over time., Conclusion: Experiencing self-assessed emotional shock by prostate cancer diagnosis may be associated with low psychological well-being for up to two years after surgery. Future research may address this high rate of self-assessed emotional shock after diagnosis with the aim to intervene to avoid this negative experience to become drawn out.

Objective: The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life., Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%)., Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home., Significance of Results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

Objective: The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2-9 years later., Methods: This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000-2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann-Whitney U-test was conducted to investigate if the experiences influenced anxiety 2-9 years later., Results: The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2-9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret., Conclusion: It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on., (Copyright © 2015 John Wiley & Sons, Ltd.)

Background: The purposes of this observational study were to analyze at what time point mothers desired psychosocial support regarding the worry about their children during the year after breast cancer diagnosis and to identify any psychosocial factors associated with this worry., Methods: In a population-based study, we analyzed data from 280 mothers diagnosed with breast cancer at Sahlgrenska University Hospital in Gothenburg, Sweden., Results: Of those who did not receive chemotherapy treatment, 70 out of 112 women (63 %) reported a desire to receive support about the worry about their children, and of those who received chemotherapy treatment, 20 out of 49 (41 %) reported a need for support immediately following diagnosis and before surgery. We identified having children at home (P < 0.0001), worry about sex life (P = 0.0009), fear of dying from breast cancer (P = 0.0055), and worried about one's personal financial situation (P = 0.0413) as the variables most closely related to worry about the children., Conclusions: Our population-based study shows that mothers with breast cancer had an immediate desire to receive psychosocial support regarding the worry about their own children. If we wish to shorten the pain associated with this worry among women diagnosed with breast cancer, it may be helpful to offer support as early in the disease trajectory as possible as it may reduce the risk of a later, more complicated, unnecessarily prolonged psychosocial rehabilitation process.

Objectives: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors., Methods: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent., Results: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss., Conclusion: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death., (Copyright © 2013 John Wiley & Sons, Ltd.)

Purpose: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up., Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety., Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively., Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.

Background: Sudden, unwelcome and repetitive thoughts about a traumatic event--intrusive thoughts--could relate to how men assess their quality of life after prostate-cancer diagnosis. We aimed to study the prevalence of intrusive thoughts about prostate cancer and their association with quality-of-life outcomes before and after radical prostatectomy., Methods: During the first year of the LAPPRO-trial, 971 men scheduled for radical prostatectomy were prospectively included from 14 urological centers in Sweden. Of those, 833 men responded to two consecutive study-specific questionnaires before and three months after surgery (participation rate 86%). The association of intrusive thoughts with three quality-of-life outcomes, i.e. self-assessed quality of life, depressive mood and waking up with anxiety was estimated by prevalence ratios that were calculated, together with a 95% confidence interval, at the same time-point as well as over time. Fisher's exact-test was used to analyze differences between respondents and non-respondents. Wilcoxon signed-ranks and Cochran-Armitage trend tests were used for analysis of change over time. To validate new questions on intrusive thoughts, written answers to open-ended questions were read and analyzed by qualitative content analysis., Results: Before surgery, 603 men (73%) reported negative intrusive thoughts about their cancer at some time in the past month and 593 men (59%) reported such thoughts three months after surgery. Comparing those reporting intrusive thoughts at least weekly or once a week before surgery with those who did not, the prevalence ratio (95% confidence interval), three months after surgery, for waking up in the middle of the night with anxiety was 3.9 (2.7 to 5.5), for depressed mood 1.8 (1.6 to 2.1) and for impaired self-assessed quality of life 1.3 (1.2 to 1.5)., Conclusion: The prevalence of negative intrusive thoughts about prostate cancer at the time of surgery associates with studied quality-of-life outcomes three months later., Trial Registration: Current Controlled Trials, ISRCTN06393679.

Background: This study investigated the association between worrying about own children and low psychological well-being during the year that follows breast cancer., Methods: In an observational population-based study, we collected data from 313 women operated for breast cancer at Sahlgrenska University Hospital in Gothenburg, Sweden., Results: Worrying about one's own children (3-7 on a 1-7 visual digital scale) was, among other variables, significantly associated with low psychological well-being 1 year after breast cancer surgery (relative risk 2.63; 95% CI 1.77-3.90; posterior probability value 98.8%)., Conclusions: In this group of women operated for breast cancer, we found an association between worrying about one's own children and low psychological well-being. In a healthcare system where resources are scarce, it becomes imperative to identify to whom resources should be directed. Therefore, we may consider prioritizing psychological interventions for mothers with younger children and develop effective means to communicate about issues related to the children to increase chances of an effective, successful rehabilitation., (Copyright © 2013 John Wiley & Sons, Ltd.)

Objective: This study investigated the long-term risk of psychological morbidity for men after losing a wife to cancer. A further aim of the study was to investigate if being in a new relationship at the time of follow-up affects the risk of psychological morbidity., Method: In a population-based cohort study, we collected data from 907 men in Sweden who lost a wife to cancer in the breast, ovary or colon 4-5 years earlier. A control group of 330 married men was also included., Results: Six hundred ninety-one of the widowers (76%) and 262 of the controls (79%) answered a questionnaire. Widowers in a new relationship had a similar risk of psychological morbidity compared with a control group of married men. However, compared with widowers in a new relationship, single widowers reported increased risks of (among other symptoms) the following: depression (RR 2.2, confidence interval [CI] 1.5-3.2), anxiety (RR 1.6, CI 1.1-2.5) emotional numbness (RR 2.2, CI 1.7-2.8), and waking up at night with anxiety (RR 2.2, CI 1.4-3.7)., Conclusions: Men who lost a wife to cancer in Sweden in 2000 or 2001 and are single 4-5 years later have increased risks of psychological morbidity, both compared with widowers who are in a new relationship at the time of follow-up and with married men. Further scientific effort is needed for improved understanding of the most likely underlying mechanisms; that is, that enhanced emotional support of a new relationship after the loss of a wife protects against psychological morbidity, or alternatively, that the healthiest widowers enter a new relationship., (Copyright © 2011 John Wiley & Sons, Ltd.)

Background: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss., Procedure: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being., Results: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life., Conclusions: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.

We investigated the feasibility of using single-item visual-digital scales for measuring anxiety and depression for research purposes within the oncology and palliative care setting. Data were retrieved from five nationwide postal questionnaires comprising 3030 individuals (response rate 76%): cancer patients, widows/parents who had lost their husband/child to cancer and population controls. All questionnaires contained the Center for Epidemiological Studies Depression scale (CES-D) and Spielberger's State-Trait Anxiety Inventory (STAI-T) as well as seven-point Visual-Digital Scales (VDS) assessing anxiety and depression. Each stepwise increased score on the VDS-depression provided a statistically significant increase in the mean score on CES-D (Spearman's r=0.582). The VDS-anxiety correlated with mean scores on STAI-T (Spearman's r=0.493), however, not all stepwise increased scores on the VDS-anxiety gave a statistically significant increase on the STAI-T. Positive- and negative predictive values were 51% and 91% for VDS-depression and 64% and 80% for VDS-anxiety. Missing data for STAI-T were 7% and 9% for CES-D; the corresponding figures were 2% for the VDS-depression and 3% for VDS-anxiety. With low attrition and agreement with psychometric scales, the Visual-Digital Scales are a feasible alternative for research in the oncology setting. However, the high negative predictive value and the low positive predictive value suggest that the visual- digital scales mainly detect the absence of the symptoms.

Background: We investigated the predictors and long-term consequences of awareness time - the length of time a woman is aware of her husband's impending death from cancer., Methods: All women (n = 506) living in Sweden under 80 years of age who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were followed with an anonymous postal questionnaire, 2-4 years after their loss., Results: We received completed questionnaires from 379 of the widows. Of these, 55 (15%) reported an awareness time of 24 hours or less, 56 (15%) of 3-6 months and 95 (26%) of one year or more. The associations between the awareness time and morbidity were of a reverted 'J-shape,' with awareness time of 24 hours or less carrying the highest risk and 3-6/6-12 months the lowest. On comparing the awareness time of 24 hours or less with 3-6 months (preformed response category), the relative risks for anxiety were found to be 1.9. (1.0-3.6) (visual digital scale) and 4.5 (1.0-20.0) for intake of tranquillising drugs. Those not informed of their husband's fatal condition or not provided with psychological support by caregivers during their husband's last months of life had an increased risk of a short awareness time., Conclusions: During a man's terminal cancer illness, the wife's awareness time varies considerably and is influenced by information and psychological support from caregivers. A short awareness time may result in an additional and avoidable psychological trauma.

Prevalence and determinants of long-term psychosocial morbidity among women giving birth to a stillborn child are largely unknown. Few, if any, systematic epidemiologic studies are available. In this pilot study we investigated one alternative way to collect data from relevant patient populations and formulated some hypotheses. Moreover, questions found unhelpful in this context were identified, e.g., whether the mother had bathed her dead child or not. Fruitful hypotheses found worthwhile testing were, among others: the risk of long-term anxiety-related symptoms is reduced if (1) the woman has seen her stillborn child, (2) she has an ultrasonic or photographic picture of the child, and (3) she has gone through a ritual, primarily burial of the child; moreover, (4) divorce may be a social consequence of the intrauterine loss of a child.

Background.Valuable trauma-related research may be hindered when the risks of asking participants about traumatic events are not carefully weighed against the benefits of their participation in the research.Method.The overall aim of our population-based survey was to improve the professional care of suicide-bereaved parents by identifying aspects of care that would be amenable to change. The study population included 666 suicide-bereaved and 377 matched (2:1) non-bereaved parents. In this article we describe the parents' perceptions of their contacts with us as well as their participation in the survey. We also present our ethical-protocol for epidemiological surveys in the aftermath of a traumatic loss.Results.We were able to contact 1410 of the 1423 eligible parents; eight of these parents expressed resentment towards the contact. Several participants and non-participants described their psychological suffering and received help because of the contact. A total of 666 suicide-bereaved and 377 non-bereaved parents returned the questionnaire. Just two out of the 1043 answered that they might, in the long term, be negatively affected by participation in the study; one was bereaved, the other was not. A significant minority of the parents reported being temporarily negatively affected at the end of their participation, most of them referring to feelings of sadness and painful memories. In parallel, positive experiences were widely expressed and most parents found the study valuable.Conclusions.Our findings suggest, given that the study design is ethically sound, that suicide-bereaved parents should be included in research since the benefits clearly outweigh the risks. [ABSTRACT FROM AUTHOR]

OBJECTIVE To evaluate how an increasing burden of symptoms influences well-being, anxiety and depression at different intervals after a radical cystectomy with urostomy for bladder cancer, as this therapy can induce long-term distressful symptoms. PATIENTS AND METHODS Patients with bladder cancer undergoing radical cystectomy in Stockholm between 1969 and 1995 were matched with 434 controls from the normal population; all 404 patients operated on between 1985 and 1995 at three other hospitals in Sweden were invited to enter the study. The final analysis included 306 patients and 310 controls, all assessed for symptoms and well-being. RESULTS A low or moderate level of well-being was reported by 35% of the patients having none or one of the symptoms studied, by 39% with two symptoms, by 45% with three symptoms and by 66% of those with four or more symptoms. The values, irrespective of symptom burden, were 45% after 2–5 years of follow-up, 58% after 6–10 years and 38% at>10 years after surgery. The total symptom burden also influenced the risk of anxiety and depression. Symptom prevalence remained largely unaffected by the duration of follow-up, except for defecation urgency. CONCLUSIONS The number of long-term symptoms after radical surgery with a urostomy for urinary bladder cancer affects the risk of anxiety, depression and low or moderate well-being. [ABSTRACT FROM AUTHOR]

We investigated if a cancer patient's unrelieved symptoms during the last 3 months of life increase the risk of long-term psychological morbidity of the surviving partner. All women (n=506) living in Sweden under 80 years of age, who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were asked to answer an anonymous postal questionnaire, 2-4 years after their loss. The widows' psychological morbidity was associated with the patient's unrelieved mental symptoms. When the patient was perceived to have been very anxious during last three months of life (compared to no observed symptoms) the relative risks for the widows' psychological morbidity were: 2.5 (1.4-4.3) for depression and 3.4 (1.4-8.2) for anxiety. When comparing reports of the patient's pain (much vs no), the relative risks were 0.8 (0.5-1.2) for widowhood depression, and 0.8 (0.4-1.7) for widowhood anxiety. The patients were found to have had adequate access to physical pain control but poor access to psychological symptom control. Efficiency in diagnosing and treating psychological complications of terminally ill cancer patients may not only improve their quality of life but possibly also prevent long-term psychological morbidity of their surviving partners. [ABSTRACT FROM AUTHOR]

Background: Depression often develops undetected; to make treatment possible, a single-item screening question may be useful. Patients and methods: We attempted to compare the accuracy of the single-item question 'Are you depressed?' with the seven-item Depression subscale of the Hospital Anxiety and Depression Scale (HADS-D) among 1192 Swedish testicular cancer survivors. Results: We obtained information from 974 men (82%). Fifty-nine men (6%) answered 'Yes' to the question 'Are you depressed?' while 118 (12%) answered 'I don't know' and 794 (82%) answered 'No'. Among the 794 men who answered 'No' to the question 'Are you depressed?', 790 (99.5%) were not considered as depressed according to HADS-D 11+. Of those answering 'Yes', 34% (20/59) were identified as depressed according to the same cut-off. Sensitivity of 'Yes' compared with HADS-D ≥11 was 61%, rising to 88% when 'Yes' and 'I don't know' were combined. Conclusion: In a population of men with a prevalence of depression similar to that of the normal population, almost none of those responding 'No' to the written question 'Are you depressed?' were depressed according to HADS-D ≥11. Adding the category 'I don't know' increases sensitivity in detecting depression. [ABSTRACT FROM AUTHOR]