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Background: Greater knowledge regarding stool frequency and infrequency during pelvic and abdominal irradiation is needed to accurately identify patients at risk of either., Objective: To describe occurrence of frequent and infrequent stools during pelvic-abdominal radiotherapy, and to compare quality of life (QoL) and activities of daily living (ADLs) of those patients experiencing frequent stools with those of patients experiencing infrequent stools., Methods: Longitudinally during radiotherapy, 193 patients (64% had gynecological tumors) documented stool frequency, medications, and QoL using the Functional Assessment of Cancer Therapy-General., Results: Fifty (26%) experienced frequent stools (≥28 stools a week), and 17 (9%) experienced infrequent stools (<3 stools a week). The frequency of stools and the consumption of medication for diarrhea were highest the last week of the radiotherapy period (50% had ≥49 stools a week, and 50% could not even define the number of stools). Thirty-seven of the patients experiencing frequent stools used antidiarrhea medications. Patients with frequent stools experienced lower QoL (P = .035) and capacity in ADLs (P = .023) compared with patients not experiencing frequent stools., Conclusions: A fourth of patients irradiated over pelvic or abdominal fields experienced frequent stools, defined as moderate to severe diarrhea, and those patients experienced lower QoL and capacity in ADLs compared with patients who did not experience frequent stools. Infrequent stools were rarely experienced., Implications for Practice: Cancer nursing professionals should deliver evidence-based strategies to prevent frequent stools and treat frequent stools as an approach to lower the risk of impaired capacity in daily living and worsened QoL.

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.

Objective: To investigate the frequency of physical activity among female pelvic cancer survivors (i.e., gynecological, rectal, and anal cancer survivors) and to investigate if survivors who practiced physical activity less than once a week differed from survivors practicing physical activity at least once a week with respect to urinary and fecal leakage, clinical and sociodemographic characteristics, quality of life (QoL), and depressed and anxious mood., Methods: Female pelvic cancer survivors (n = 578, mean age 64 years) answered a questionnaire 6-48 months after radiotherapy. A multivariable regression model analyzed factors covarying with frequency of physical activity. We compared QoL and depressed and anxious mood between women practicing physical activity at least or less than once a week., Results: Of 568 women delivering data, 186 (33%) practiced physical activity less than once a week while 382 (67%) practiced physical activity at least weekly. Women who leaked a large or all volume of stools (p = 0.01), had just elementary school level of education (p < 0.001), smokers (p = 0.049), or had lymphedema without receiving lymphedema treatment (p = 0.030) were more likely to practice physical activity less than weekly (50%, 45%, 45%, and 37%, respectively) compared with other women. Women practicing physical activity at least weekly reported better QoL (p < 0.001) and lower frequency of depressed mood (p = 0.044) compared with the others., Conclusions: Female cancer survivors experiencing fecal leakage were less likely to practice weekly physical activity than survivors without leakage. The survivors practicing weekly physical activity experienced better QoL and experienced depressed mood less frequently than the others.

Background: Surgery for prostate cancer has a large impact on quality of life (QoL)., Objective: To evaluate predictors for the level of self-assessed QoL at 3 mo, 12 mo, and 24 mo after robot-assisted laparoscopic (RALP) and open radical prostatectomy (ORP)., Design, Setting, and Participants: The LAParoscopic Prostatectomy Robot Open study, a prospective, controlled, nonrandomised trial of more than 4000 men who underwent radical prostatectomy at 14 centres. Here we report on QoL issues after RALP and ORP., Outcome Measurements and Statistical Analysis: The primary outcome was self-assessed QoL preoperatively and at 3 mo, 12 mo, and 24 mo postoperatively. A direct validated question of self-assessed QoL on a seven-digit visual scale was used. Differences in QoL were analysed using logistic regression, with adjustment for confounders., Results and Limitations: QoL did not differ between RALP and ORP postoperatively. Men undergoing ORP had a preoperatively significantly lower level of self-assessed QoL in a multivariable analysis compared with men undergoing RALP (odds ratio: 1.21, 95% confidence interval: 1.02-1.43), that disappeared when adjusted for preoperative preparedness for incontinence, erectile dysfunction, and certainty of being cured (odds ratio: 1.18, 95% confidence interval: 0.99-1.40). Incontinence and erectile dysfunction increased the risk for poor QoL at 3 mo, 12 mo, and 24 mo postoperatively. Biochemical recurrence did not affect QoL. A limitation of the study is the nonrandomised design., Conclusions: QoL at 3 mo, 12 mo, and 24 mo after RALP or ORP did not differ significantly between the two techniques. Poor QoL was associated with postoperative incontinence and erectile dysfunction but not with early cancer relapse, which was related to thoughts of death and waking up at night with worry., Patient Summary: We did not find any difference in quality of life at 3 mo, 12 mo, and 24 mo when open and robot-assisted surgery for prostate cancer were compared. Postoperative incontinence and erectile dysfunction were associated with poor quality of life., (Copyright © 2017 European Association of Urology. Published by Elsevier B.V. All rights reserved.)

Objective: Cancer treatment may result in various effects that last long after treatment has been concluded. The purpose of this study was to explore to what extent scars affect adolescents and young adults postcancer treatment., Methods: In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. Question development involved expert validation by professionals from oncology units, midwives, epidemiologists, and statisticians. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors. The topics covered in the questionnaire were as follows: psychosocial health, body image and sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to teenage and young adult cancer survivors and matched controls in Sweden., Results: In this study, the relative risk of feeling less attractive due to scars was higher both for female cancer survivors RR 1.48, CI 1.05-2.08 and male cancer survivors RR 1.90, CI 1.15-3.13 compared to controls. The feeling of attractiveness was negatively related to the size of scars in both cancer and control groups. In a logistic regression analysis, significant associations were found between age, education, exercise, depression, and the feeling of low attractiveness due to scars., Conclusions: The results of this study provide a basis for care interventions for teenage and young adult cancer patients during and after cancer treatment. Further research is needed on care interventions to reduce, if possible, the impact of scars.

Background: Men with prostate cancer experience adjuvant androgen deprivation therapy (ADT) differently., Objective: To evaluate the effect of ADT on quality of life (QoL), patients' experience of clinical check-ups, and differences in cancer information as explanatory factors., Design, Setting, and Participants: A study-specific questionnaire was sent to all men randomized in the SPCG-4 trial to radical prostatectomy (RP) or watchful waiting (WW) still alive (400/695) and a control group of 281 men., Intervention: ADT., Outcome Measurements and Statistical Analysis: Self-assessed QoL, worry at clinical check-ups, and amount of information received. Estimated relative risks with associated 95% confidence intervals (CI) for risk comparisons between groups using a log-binomial regression., Results and Limitations: The SPCG-4 men had median follow-up of 12.2 yr and median age of 77.0 yr; 26% in the RP group and 40% in the WW group received ADT treatment. High QoL for men without ADT was 36% for the RP group, 44% for the WW group, and 45% for the control group. High QoL for men with ADT was 30% for the RP group and 20% for the WW group. Among men with ADT, those in the WW group received significantly less information about the disease than men in the RP group. Receiving no or little information about prostate cancer was reported by 17% of patients in the RP group and 39% in the WW group among men receiving ADT (relative risk 0.44, 95% CI 0.22-0.89). At clinical check-ups, men treated with ADT had significantly higher levels of worry, regardless of study group, than men without ADT. Limitations include the lack of longitudinal data and a low number of men receiving ADT in the RP group., Conclusions: Men on WW without ADT reported high QoL comparable to that for men without prostate cancer. ADT treatment in the WW group was associated with the lowest scores for all psychological parameters, and these men reported that they were least informed about prostate cancer and its consequences., Patient Summary: Good communication and information from caregivers are associated with less negative psychological effects at prostate cancer progression., (Copyright © 2018 European Association of Urology. Published by Elsevier B.V. All rights reserved.)

Objective: Studies indicate that social constraints (barriers to emotional expression) may be a risk factor for psychological morbidity. We aimed to investigate the association between prostate cancer-related social constraints and psychological well-being following prostate cancer surgery., Methods: In a group of 3478 partnered patients, participating in the Laparoscopic Prostatectomy Robot Open trial, a prospective multicenter comparative study of robot-assisted laparoscopic and retropubic radical prostatectomy for prostate cancer, we used log-binomial regression analysis to investigate the links between prostate cancer-related social constraints at 3 months after surgery and psychological well-being at 12 and 24 months., Results: A total of 1086 and 1093 men reported low well-being at 12 and 24 months, respectively. Prostate cancer-related social constraints by partner predicted low psychological well-being at 12 months (adjusted RR: 1.4; 95% CI, 1.1-1.9) and by others (adjusted RR: 1.9; 95% CI, 1.1-3.5). Intrusive thoughts mediated the association., Conclusions: Negative responses from the social environment, especially from partner to talking about the prostate cancer experience affected patients' psychological well-being 2 years after radical prostatectomy. Results emphasize the importance of helping patients mobilize psychosocial resources within their social network, especially among those with a lack of quality psychosocial support., (Copyright © 2017 John Wiley & Sons, Ltd.)

Objective: Negative intrusive thoughts about one's prostate cancer have been associated with depressive mood and impaired quality of life among prostate cancer patients. However, little is known about possible predictors for negative intrusive thoughts among this group. We aimed to identify health- and care-related predictors for such thoughts among a population of men newly diagnosed with prostate cancer and undergoing radical prostatectomy., Methods: In the LAPPRO-trial, 3154 men (80%) answered study-specific questionnaires at admission and 3 months after surgery. Questions concerned socio-demographics, health, uncertainty, preparedness for symptoms, and the outcome-negative intrusive thoughts. Associations between variables were analyzed by log-binominal and multivariable approach., Results: The strongest predictor of negative intrusive thoughts at admission to surgery was uncertainty of cure, followed by binge drinking, poor physical health, antidepressant medication, not being prepared for urinary symptoms, age under 55, and physical pain. Reporting it not probable to obtain urinary symptoms after surgery lowered the odds. Negative intrusive thoughts before surgery were the strongest predictor for such thoughts 3 months later followed by uncertainty of cure, physical pain, younger age, living alone, and poor self-reported physical health., Conclusions: Our findings showed an association of preoperative uncertainty of cure as well as low preparedness for well-known surgery-induced symptoms with higher occurrence of negative intrusive thoughts about prostate cancer. Future studies should examine if interventions designed to have healthcare professionals inform patients about their upcoming prostatectomy reduce patients' negative intrusive thoughts and thereby, improve their psychological well-being., (Copyright © 2016 John Wiley & Sons, Ltd.)

Objective: The aim of this study was to evaluate the association of self-assessed preoperative physical activity, alcohol consumption and smoking with self-assessed quality of life, negative intrusive thoughts and depressed mood after radical prostatectomy., Materials and Methods: The Laparoscopic Prostatectomy Robot Open (LAPPRO) trial was a prospective, controlled, non-randomized longitudinal trial of patients (n = 4003) undergoing radical prostatectomy at 14 centers in Sweden. Validated patient questionnaires were collected at baseline, and 3, 12 and 24 months after surgery., Results: Preoperative medium or high physical activity or low alcohol consumption or non-smoking was associated with a lower risk of depressed mood. High alcohol consumption was associated with increased risk of negative intrusive thoughts. Postoperatively, quality of life and negative intrusive thoughts improved gradually in all groups. Depressed mood appeared to be relatively unaffected., Conclusions: Evaluation of preoperative physical activity, tobacco and alcohol consumption habits can be used to identify patients with a depressed mood in need of psychological support before and immediately after surgery. Quality of life and intrusive thoughts improved postoperatively.

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.

Background: Many clinicians believe that preparedness before surgery for possible post-surgery side effects reduces the level of bother experienced from urinary incontinence and decreased sexual health after surgery. There are no published studies evaluating this belief. Therefore, we aimed to study the level of preparedness before radical prostatectomy and the level of bother experienced from urinary incontinence and decreased sexual health after surgery., Material and Methods: We prospectively collected data from a non-selected group of men undergoing radical prostatectomy in 14 centers between 2008 and 2011. Before surgery, we asked about preparedness for surgery-induced urinary problems and decreased sexual health. One year after surgery, we asked about bother caused by urinary incontinence and erectile dysfunction. As a measure of the association between preparedness and bothersomeness we modeled odds ratios (ORs) by means of logistic regression., Results: Altogether 1372 men had urinary incontinence one year after surgery as well as had no urinary leakage or a small urinary dribble before surgery. Among these men, low preparedness was associated with bother resulting from urinary incontinence [OR 2.84; 95% confidence interval (CI) 1.59-5.10]. In a separate analysis of 1657 men we found a strong association between preparedness for decreased sexual health and experiencing bother from erectile dysfunction (OR 5.92; 95% CI 3.32-10.55)., Conclusion: In this large-sized prospective trial, we found that preparedness before surgery for urinary problems or sexual side effects decreases bother from urinary incontinence and erectile dysfunction one year after surgery.

Purpose: To study if partnership modifies the effect of gastrointestinal symptoms on quality of life after radiation therapy for prostate cancer., Material and Methods: Using a study-specific questionnaire we conducted a cross-sectional follow-up of the occurrence gastrointestinal symptoms and quality of life after radiation therapy for prostate cancer. We obtained information from 874 prostate cancer survivors treated with radiation therapy at the Sahlgrenska University Hospital, Sweden between 1994 and 2006. In this paper we describe how partnership status affects the association between gastrointestinal symptoms and quality of life., Results: We found that unpartnered men with gastrointestinal symptoms reported a lower quality of life than unpartnered men without such symptoms. Unpartnered men with symptoms had an excess risk of low quality of life compared with unpartnered men without symptoms for those experiencing altered composition of stools, prevalence ratio 3.8 (95% CI 1.1-13.1), leakage, 3.6 (1.3-10.1), sensory bowel symptoms, 4.5 (1.6-12.8), and for urgency, 4.2 (1.2-15.1). We also found that unpartnered men with symptoms had an excess risk of low quality of life compared with partnered men with symptoms for those experiencing altered composition of stools, prevalence ratio 2.9 (95% CI 1.4-5.8), leakage 2.8 (1.2-6.4), sensory bowel symptoms 3.4 (1.5-7.4), urgency 2.6 (1.2-5.8), and for any gastrointestinal symptom 2.5 (1.3-4.9)., Conclusion: Unpartnered men may represent a group that is specifically vulnerable to the distressful effects of gastrointestinal symptoms after radiation therapy for prostate cancer.

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: For men with localised prostate cancer, surgery provides a survival benefit compared with watchful waiting. Treatments are associated with morbidity. Results for functional outcome and quality of life are rarely reported beyond 10 years and are lacking from randomised settings. We report results for quality of life for men in the Scandinavian Prostate Cancer Group Study Number 4 (SPCG-4) after a median follow-up of more than 12 years., Methods: All living Swedish and Finnish men (400 of 695) randomly assigned to radical prostatectomy or watchful waiting in SPCG-4 from 1989 to 1999 were included in our analysis. An additional 281 men were included in a population-based control group matched for region and age. Physical symptoms, symptom-induced stress, and self-assessed quality of life were evaluated with a study-specific questionnaire. Longitudinal data were available for 166 Swedish men who had answered quality-of-life questionnaires at an earlier timepoint., Findings: 182 (88%) of 208 men in the radical prostatectomy group, 167 (87%) of 192 men in the watchful-waiting group, and 214 (76%) of 281 men in the population-based control group answered the questionnaire. Men in SPCG-4 had a median follow-up of 12·2 years (range 7-17) and a median age of 77·0 years (range 61-88). High self-assessed quality of life was reported by 62 (35%) of 179 men allocated radical prostatectomy, 55 (34%) of 160 men assigned to watchful waiting, and 93 (45%) of 208 men in the control group. Anxiety was higher in the SPCG-4 groups (77 [43%] of 178 and 69 [43%] of 161 men) than in the control group (68 [33%] of 208 men; relative risk 1·42, 95% CI 1·07-1·88). Prevalence of erectile dysfunction was 84% (146 of 173 men) in the radical prostatectomy group, 80% (122 of 153) in the watchful-waiting group, and 46% (95 of 208) in the control group and prevalence of urinary leakage was 41% (71 of 173), 11% (18 of 164), and 3% (six of 209), respectively. Distress caused by these symptoms was reported significantly more often by men allocated radical prostatectomy than by men assigned to watchful waiting. In a longitudinal analysis of men in SPCG-4 who provided information at two follow-up points 9 years apart, 38 (45%) of 85 men allocated radical prostatectomy and 48 (60%) of 80 men allocated watchful waiting reported an increase in number of physical symptoms; 50 (61%) of 82 and 47 (64%) of 74 men, respectively, reported a reduction in quality of life., Interpretation: For men in SPCG-4, negative side-effects were common and added more stress than was reported in the control population. In the radical prostatectomy group, erectile dysfunction and urinary leakage were often consequences of surgery. In the watchful-waiting group, side-effects can be caused by tumour progression. The number and severity of side-effects changes over time at a higher rate than is caused by normal ageing and a loss of sexual ability is a persistent psychological problem for both interventions. An understanding of the patterns of side-effects and time dimension of their occurrence for each treatment is important for full patient information., Funding: US National Institutes of Health; Swedish Cancer Society; Foundation in Memory of Johanna Hagstrand and Sigfrid Linnér., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Purpose: The best possible urinary diversion after cystectomy, if any, is yet to be defined to our knowledge. Therefore, we investigated nocturnal urinary disturbances and quality of life in individuals who have undergone cystectomy with urinary diversion for bladder cancer., Materials and Methods: All patients 30 to 80 years old who had undergone cystectomy with urinary diversion at 7 urological centers in Sweden were included in the study. Sleep disturbances, nocturnal urinary leakage and urine evacuation frequency, as well as their effect on self-assessed quality of life variables were measured with a study specific questionnaire. We received the questionnaire from 452 (92%) of 491 identified individuals. Outcome variables were dichotomized and the results are presented as relative risks., Results: Those individuals with an orthotopic neobladder had an increased risk of nocturnal urinary leakage and/or urine evacuation frequency compared to those with a noncontinent urostomy or cutaneous continent reservoir. Of the patients with an orthotopic neobladder 37% reported negative effects on nocturnal sleep compared to 22% and 14% of those with a noncontinent or continent urostomy, respectively. Of those patients reporting that the urinary diversion had a negative effect on nocturnal sleep 88% had a decreased quality of life vs 65% of those who stated that the urinary diversion had no or little influence on nocturnal sleep., Conclusions: Nocturnal urinary problems are of great concern for individuals with urinary diversion, especially those with an orthotopic neobladder. Regular disruption of sleep decreases quality of life., (Copyright (c) 2010 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.)

Introduction: Fecal incontinence is a symptom reported by cancer survivors after pelvic radiotherapy and is recognized to be one of the most troubling symptom-induced sources of distress to patients., Objective: To investigate how fecal incontinence, patient-reported as emptying of all stools into clothing without forewarning, impact self-assessed quality of life from a social, psychological, sexual, and functional aspect among gynecological cancer survivors treated with pelvic radiotherapy., Methods: We identified a cohort of 789 eligible women in the Stockholm and Gothenburg areas treated with pelvic radiotherapy alone or as combined treatment of gynecological cancer. From the Swedish Population Registry, we identified 478 control women. Data were collected using a study-specific, validated, postal questionnaire including questions covering symptoms from the pelvic region, demographics, social functioning, psychological, and quality-of-life issues., Results: Participation was 78% for cancer survivors and 72% for control women. The fecal incontinence symptom emptying of all stools into clothing without forewarning was reported by 70 cancer survivors (12%), with lowered quality of life in 74% of the 70 cancer survivors. This symptom kept the survivors from going to parties (relative risk [RR], 11.8; 95% confidence interval [CI], 6.6-21.1), kept the survivors from traveling (RR, 9.3; 95% CI, 5.3-16.5), affected their work ability (RR, 7.9; 95% CI, 3.8-16.4), hindered their sexual life (RR, 9.2; 95% CI, 4.8-17.6), and changed them as persons (RR, 4.9; 95% CI, 2.9-8.1). The prevalence of the symptom emptying of all stools into clothing without forewarning among control women was 3 (1%) of 344., Conclusions: Among gynecological cancer survivors having undergone pelvic radiotherapy alone or as part of a combined treatment, fecal incontinence is associated with social, psychological, sexual, and functional consequences.

Background: Quality-of-life outcomes are important in the choice of treatment strategy for men with localized prostate cancer., Objective: To evaluate how follow-up time, number of physical symptoms, and presence of androgen deprivation affected quality of life among men randomized to radical prostatectomy or watchful waiting., Design, Setting, and Participants: The study group was composed of all 376 living men included in the Swedish part of the Scandinavian Prostate Cancer Group Study Number 4 (SPCG-4) between January 1, 1989, and February 29, 1996. Quality-of-life data were collected after a mean follow-up time of 4.1 yr., Intervention: All patients were randomly assigned to radical prostatectomy or watchful waiting. Forty-five men were androgen deprived., Measurements: Data of specific symptoms, symptom-induced stress, sense of well-being, and self-assessed quality of life were obtained by means of a questionnaire. Psychological symptoms were assessed using seven-point visual digital scales., Results and Limitations: In analyses stratified on the basis of the numbers of physical symptoms, anxiety and depressed mood were less common, and sense of well-being and self-assessed quality of life were better throughout in the radical prostatectomy group than in the watchful waiting group. As the number of physical symptoms increased, all psychological variables became worse and more prominent in the watchful waiting group. After a follow-up time of 6-8 yr, a significant decrease in quality of life (p=0.03) was seen in the watchful waiting group. Twenty-four percent of androgen-deprived patients assigned to watchful waiting reported high self-assessed quality of life compared with 60% in the radical prostatectomy group. Eighty-eight percent of patients had clinically detected tumors., Conclusions: Androgen deprivation negatively affected self-assessed quality of life in men assigned to watchful waiting. The number of physical symptoms was associated with the level of quality of life. Quality of life was lower with longer follow-up time in both groups and was statistically significant in the watchful waiting group (p=0.03).

Objective: To explore the predictors of the quality of marriage of men with prostate cancer, as being diagnosed with prostate cancer affects the quality of life of the man and his partner, and while some aspects are known about the impact of the disease and its treatments on the man's quality of life, less is known about the marriage quality (MQ) in this new situation., Patients and Methods: We followed 591 men from Stockholm County (Sweden) who had been diagnosed with prostate cancer in 1999, and who were 50-80-years old and alive on 1 October 2002. The men completed a questionnaire asking about their MQ, and several other sociodemographic, medical and economic characteristics., Results: Of 426 men who provided information and who had a spouse or partner, 168 (39.4%) reported having a lower MQ due to their disease. Increased expenditure (46.2% vs 30.9%; relative risk, 1.5; 95% confidence interval, 1.1-2.0) and decreased income (55.4% vs 36.5%; 1.5, 1.1-2.0) as a consequence of prostate cancer reduced their MQ. Patients who had erectile dysfunction had a lower MQ (46.3% vs 11.8%; 3.9; 2.0-7.6). There was also a lower MQ in men who were depressed or had urinary leakage as a consequence of prostate cancer. Younger men (50-69 years old) with prostate cancer had a lower MQ than older men (70-80 years; 51.9% vs 33.1%; 1.6; 1.2-2.0)., Conclusions: Men whose economic situation is worsened by prostate cancer reported having a reduced MQ. There was also such an effect for men with erectile dysfunction, urinary leakage and depression, and among men diagnosed with prostate cancer when young.

Objective: In a population-based nationwide survey, we aimed to study symptoms in children with malignancies during the last month of their lives. Understanding which symptoms affect children in the terminal phase of disease is crucial to improve palliative care., Methods: We attempted to contact all parents in Sweden who had lost a child to cancer during a 6-year period. The parents were asked, through an anonymous postal questionnaire, about symptoms that affected the child's sense of well-being during the last month of life., Results: Information was supplied by 449 (80%) of 561 eligible parents. The symptoms most frequently reported with high or moderate impact on the child's well-being were: physical fatigue (86%), reduced mobility (76%), pain (73%), and decreased appetite (71%). Irrespective of the specific malignancy, physical fatigue was the most frequently reported symptom, and pain was among the 3 most frequently reported. Children who died at 9 to 15 years of age were reported to be moderately or severely affected, by a number of symptoms, significantly more often than other children. The gender of the reporting parent had no significant bearing on any of the symptoms reported., Conclusions: The most frequently reported symptoms in children with malignancies to be aware of and possibly address during the terminal phase are physical fatigue, reduced mobility, pain, and decreased appetite. Children aged 9 to 15 years are reported to be moderately or severely affected by more symptoms than children in other age groups. Mothers and fathers report a similar prevalence of symptoms.

Objective: The Radiumhemmets Scale of Disease-Specific Symptom Assessment-Prostate Cancer has been used in several studies. However, no test-retest reliability study of it has been conducted concerning the assessment of urinary, anal sphincter or large bowel function. The aim of this study was to evaluate the reliability of items assessing these functions., Material and Methods: We investigated 89 prostate cancer patients randomly selected from a group of patients diagnosed in Stockholm. The patients answered 24 questions assessing anal sphincter, large bowel and urinary function twice, with a 3-week interval in-between, to assess reliability., Results: Most of the questions assessing bowel and urinary symptoms showed substantial or near-perfect agreement. The kappa value for bowel symptom items was > or = 0.60 for all items, except for defecation urgency (0.40-0.55). The kappa value for urinary symptom items varied between 0.43 and 1.0, except for urinary urgency (0.30-0.39)., Conclusions: When comparing the impact of different symptoms of anal sphincter, large bowel or urinary tract dysfunction, it may be important to consider that defecation urgency and urinary urgency have the highest measuring error (low reliability). This error dilutes assessed associations with, for example, decreased quality of life. Nevertheless, the test-retest reliability for anal sphincter, large bowel and urinary symptoms indicates that surveys yield meaningful information.

Objective: To evaluate the possible impact of a neutral third party on the patients' responses to health-related quality of life (HRQL) instruments., Methods: 119 patients operated at the Department of Urology in Lund with radical cystectomy and continent urinary tract reconstruction (continent cutaneous diversion or orthotopic bladder substitution) for locally advanced bladder cancer were included in the study. They were randomly divided in two groups, similar with regard to gender, age, length of follow-up, and type of reconstruction. The EORTC instruments QLQ-C30 and QLQ-BLM30 were sent to the patients. One group; "Lund patients", received the instruments from the Department of Urology in Lund, while the other group; "Stockholm patients", received the instruments from a neutral third party, i.e. "The Project Health and Well-Being" at the Karolinska Institutet in Stockholm., Results: Response rates were high in both groups, 59 out of 60 among Lund patients and 57 out of 59 among Stockholm patients. There were statistically significantly more bowel problems reported in the Stockholm patients than in the Lund patients (p<0.05) in the QLQ-C30 instrument. Regarding type of reconstruction, the Stockholm patients with continent cutaneous diversion scored higher for constipation than the Lund patients (p<0.05), and the Stockholm patients with bladder substitution scored lower for emotional functioning and higher for dyspnoea and economical problems than the Lund patients (p<0.05. There were no statistically significant differences between the Lund patients and the Stockholm patients in the QLQ-BLM30 instrument., Conclusion: Though few factors differed between the two groups, the results may indicate that different results are obtained when a study is totally administered and analyzed by a neutral third party as compared with the surgeon or his or her institution. Larger studies are needed to further test this hypothesis.

Background: We evaluated symptoms and self-assessments of quality of life in men with localized prostate cancer who participated in a randomized comparison between radical prostatectomy and watchful waiting., Methods: Between 1989 and 1999, a group of Swedish urologists randomly assigned men with localized prostate cancer to radical prostatectomy or watchful waiting. In this follow-up study, we obtained information from 326 of 376 eligible men (87 percent) concerning certain symptoms, symptom-induced distress, well-being, and the subjective assessment of quality of life by means of a mailed questionnaire., Results: Erectile dysfunction (80 percent vs. 45 percent) and urinary leakage (49 percent vs. 21 percent) were more common after radical prostatectomy, whereas urinary obstruction (e.g., 28 percent vs. 44 percent for weak urinary stream) was less common. Bowel function, the prevalence of anxiety, the prevalence of depression, well-being, and the subjective quality of life were similar in the two groups., Conclusions: The assignment of patients to watchful waiting or radical prostatectomy entails different risks of erectile dysfunction, urinary leakage, and urinary obstruction, but on average, the choice has little if any influence on well-being or the subjective quality of life after a mean follow-up of four years., (Copyright 2002 Massachusetts Medical Society)

Purpose: We compared subjective quality of life, well-being, urinary tract symptoms and distress in patients after radical cystectomy and orthotopic urinary reconstruction with those in a matched control population., Materials and Methods: Included in this study were 101 consecutive recurrence-free patients who underwent radical cystectomy and orthotopic bladder substitution with an ileal urethral Kock neobladder at Herlev Hospital with a minimum followup of 1 year. A frequency matched control group comprising 147 individuals was selected from the same geographical region. Information was collected by an anonymous postal questionnaire and analyzed externally in Sweden., Results: The prevalence of low or moderate psychological well-being (32% versus 36%) and subjective quality of life (30% versus 38%), and high or moderate anxiety (23% versus 18%) and depression (26% versus 37%) was similar in patients with an orthotopic neobladder and population controls. Patients with a neobladder felt as attractive as the control population. Of the operated men 94% had erectile dysfunction compared with 48% of controls. Daytime and nighttime urinary frequency was similar in patients and controls (3% and 3%, and 15% and 13%, respectively), while the prevalence of urinary leakage at least once monthly was higher in patients (18% versus 5%). Intermittent self-catheterization was performed by 26% of patients with a neobladder. Urinary tract infection (14% versus 6%) was more common and the prevalence of distressful bowel symptoms (14% versus 9%) was slightly more common in patients than in controls., Conclusions: Well-being and subjective quality of life in patients after radical cystectomy and orthotopic bladder substitution were similar to those in a matched control population.

Objectives: To identify complications of various forms of treatments for prostate cancer and their influence on patients' quality of life with the ultimate goal of suggesting a Quality of Life Questionnaire specific for prostate cancer for further validation., Methods: The literature was screened for reports on the more common complications following various forms of therapy for prostate cancer. Frequencies were summarized. The scarce literature reporting on quality of life in prostate cancer was reviewed and conflicting data were discussed and reassessed. Suggested questionnaires used in other studies were critically scrutinized and the various questions recorded., Results: Following radical surgery, impotence and incontinence were the most common complications reducing patients' quality of life. The literature was not uniform with regard to whether loss of sexual function was regarded as a worse complication than loss of urinary control. Following radiotherapy, intestinal problems and sexual dysfunction were the dominating side effects. Quality of life was best preserved in surveillance-only series. Following endocrine therapy, not only impotence and hot flushes were focused upon, but also mental dysfunction and intestinal dysfunction from nonsteroidal antiandrogens, additionally, the importance of effective palliation was highlighted. A Quality of Life Questionnaire should contain general domains relevant to cancer patients, cancer-specific questions, and prostate-cancer-specific questions. The latter group includes: worry for prostate cancer and its prognosis, bone/pelvic pain, lower urinary tract symptoms, urinary incontinence, urinary diversion, bowel function, sexual function, endocrine effects, and satisfaction with medical care for prostate cancer., Conclusions: A modern trial of prostate cancer treatment should be regarded as insufficient without including a validated Quality of Life Questionnaire.

Purpose: The aim of this study was to assess to what extent patients treated with radiation therapy for prostate cancer experience change in sexual functioning and to what extent this effects quality of life., Methods and Materials: Information was provided by 53 men treated with radiation therapy for localized prostate cancer. Assessment was made with the "Radiumhemmets Scale of Sexual Functioning," which measures sexual desire, erectile capacity, orgasm, and to what extent a decrease in any of these aspects of sexual functioning affects quality of life. Function before treatment was assessed retrospectively., Results: Sexual desire diminished among 77% after treatment. The erection stiffness decreased in 77%. Before external radiation therapy, 66% had an erection usually sufficient for intercourse. Half of the men lost this ability after treatment. Of those retaining orgasm after treatment, 47% reported a decreased orgasmic pleasure and 91% a reduced ejaculation volume. Of all men, 50% reported that quality of life had decreased much or very much due to a decline in the erectile capacity following external radiation therapy., Conclusion: The results of the present study indicate that external radiation therapy for prostate cancer is associated with a reduction in sexual desire, erectile capacity, and organism functions. In a majority of patients this reduces quality of life. Previously, we may have underestimated the importance an intact sexual function has for the quality of life in this patient category of elderly men.

Thirty-nine relapse-free testicular cancer patients were interviewed 1-6 years after completion of chemotherapy, in connection with a study of conditioned nausea. Some structured questions about experiences of diagnosis and treatment were included, but this report also summarizes spontaneously given information. The patients' first contact with a treatment setting appears to be an important determinant of the overall treatment experience. If resources are limited, they are used effectively if concentrated during the initial contact with the patient. Support from relatives and friends was reported as good for 90% of the men during treatment. Thirty-two distressing factors during the treatment period were mentioned; the most severe were nausea and vomiting. Other high-ranking factors were "being restricted for the infusion" and "the smell of food." There is a need for flexibility in ways to prepare and serve food on the ward. Some men argued for more information concerning the disease and chemotherapy; others said they received too much information. Several men suggested that a debriefing talk with the physician and someone from the staff should be arranged 6 months to 1 year after completion of treatment.

We have investigated whether hematopoietic stem cell transplantation (HSCT) before the death of children with cancer has a long-term effect on the physical and psychological well-being of the parents. A nationwide questionnaire was sent out to all bereaved parents in Sweden who had lost a child due to a malignancy from 1992 to 1997. Self-reported levels of anxiety, depression and quality of life as well as overall psychological and physical well-being in bereaved parents of children who underwent HSCT were compared with bereaved parents whose children did not receive a transplant. Bereaved parents whose children underwent HSCT had, according to a visual digital scale, an increased relative risk (RR) of long-term anxiety (RR 1.5; 95% confidence interval (CI) 1.0-2.1), poor psychological well-being (RR1.3; 95% CI 1.1-1.5), low quality of life (RR 1.4; 95% CI 1.2-1.7) and poor physical health (RR 1.3; 95% CI 1.1-1.5), whereas the State-Trait Anxiety Inventory and 'The Göteborg Quality of Life Instrument' were non-significantly increased (RR 1.3; 95% CI 0.8-2.3 and RR 1.7; 95% CI 0.9-3.3, respectively). The risks of these consequences were further augmented in case of multiple HSCT. We suggest that bereaved parents of children undergoing HSCT may be at greater risk of decreased psychological well-being than other bereaved parents of children with cancer. [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]

Reports on the improvement of the quality of life of patients with orthotopic bladder substitution with daily intermittent catheterization.