Cancer risk in relatives of patients with a primary disorder of lymphocyte cytotoxicity: a retrospective cohort study.

BACKGROUND: Mutations in genes for perforin-dependent lymphocyte cytotoxicity are associated with haemophagocytic lymphohistiocytosis, a rare disease of severe hyperinflammation that typically becomes evident in early childhood. It has been suggested that individuals with hypomorphic biallelic mutations in genes associated with haemophagocytic lymphohistiocytosis are at increased risk of developing haematological malignancies. We aimed to assess whether relatives of patients with primary haemophagocytic lymphohistiocytosis (ie, heterozygous carriers of these mutated genes) were more likely to develop cancer. METHODS: In this retrospective cohort study, we used a multigeneration registry to identify relatives (parents and grandparents) of 79 Swedish children (<15 years) with primary haemophagocytic lymphohistiocytosis diagnosed between 1971 and 2011. For each relative, we randomly selected eight matched individuals from the Swedish total population registry, stratified for sex, birth year, and birth region. Relatives and matched controls were cross-linked with the Swedish Cancer Registry to establish cancer incidence rate. We then calculated the incidence rate ratio between first-degree and second-degree relatives and the matched controls. Additionally, we assessed natural-killer-cell-mediated cytotoxicity in a subgroup of first-degree relatives using standard 4 h (51)Cr assay and flow cytometry quantification of the upregulation of surface CD107a. FINDINGS: We identified 346 first-degree and second-degree relatives from 67 families (67 mothers, 66 fathers, 106 grandmothers, and 107 grandfathers) and 2768 matched controls. Median follow-up was 49 years, range 0-54 years. By death or last follow-up (Dec 31, 2012), first-degree relatives had a significantly increased incidence rate of malignancies than did controls (incidence rate per 1000 person-years 2.78 [95% CI 1.42-4.15] vs 1.56 [1.16-1.95]; incidence rate ratio 1.79 [95% CI 1.06-3.03]; p=0.030). Mothers had a particularly increased risk (incidence rate per 1000 person-years 4.43 [95% CI 1.99-6.87] vs 1.60 [1.08-2.11]; incidence rate ratio 2.78 [95% CI 1.48-5.21]; p=0.0014), whereas no difference was found between fathers and controls (1.24 [0.00-2.51] vs 1.52 [0.89-2.15]; 0.82 [0.29-2.29]; p=0.70) or between grandparents and controls (7.24 [5.44-9.04] vs 6.36 [5.70-7.03]; 1.14 [0.88-1.48]; p=0.33). Functional analysis of heterozygous carriers of mutations associated with haemophagocytic lymphohistiocytosis could not show significantly reduced lymphocyte cytotoxicity. INTERPRETATION: Heterozygous mutations in genes associated with haemophagocytic lymphohistiocytosis might be a new risk factor for cancer. The increased risk of cancer might imply haploinsufficiency of cytotoxic lymphocyte-mediated immunosurveillance of cancer in carriers of these mutations. Our findings might support intensified screening for malignancies in relatives of patients with haemophagocytic lymphohistiocytosis. FUNDING: Swedish Children's Cancer Foundation, Swedish Research Council, Histiocytosis Association, Swedish Cancer Society, Swedish Cancer and Allergy Foundation, Mary Béve Foundation, Karolinska Institutet Research Foundation, Stockholm County Council (ALF-project).

Pediatric Crohn's disease from onset to adulthood: granulomas are associated with an early need for immunomodulation.

OBJECTIVE: Childhood onset Crohn's disease (CD) is considered more aggressive than adult onset disease. Epithelioid cell granulomas in intestinal biopsies are one, non-obligate, criterion of CD. We investigated granulomas as markers of CD severity in children followed to adulthood. MATERIAL AND METHODS: Forty-five individuals with childhood onset CD were studied from diagnosis until attainment of final height, with data on disease location, medical and surgical management and with detailed growth data analyses. A blinded review of diagnostic biopsies was also performed. RESULTS: We found granulomas in 22/45 (49%) children at diagnosis, altogether in 28/45 (62%) patients during the disease course (median overall follow-up - 12.3 years, range 9.3-18). Granulomas were found in 9/11 (82%) with upper gastrointestinal involvement (cumulatively 17/20, 85%) (p = 0.017 and p = 0.006, respectively). The time from diagnosis to initiating immune modulating treatment (median 4.5 months, range 0-75) was shorter in the granuloma-positive group (16/22) compared to the granuloma-negative group (18/23) (median 33 months, range 2-105; p = 0.01). The median standard deviation score height at diagnosis and final adult height (both adjusted for target height) did not correlate to findings of granulomas. CONCLUSIONS: Epithelioid cell granulomas were associated with a shorter time to initiating immune modulating drugs, as a possible sign of more severe disease, but growth was not affected.

Risk factors for early death in children with haemophagocytic lymphohistiocytosis.

AIM: Haemophagocytic lymphohistiocytosis (HLH) is a life-threatening disturbance of immunoregulation. HLH comprises primary and acquired forms with different disease severity. A large proportion of deaths occur early into treatment. We investigated association with early death for laboratory and clinical parameters before the start of and 2 weeks into therapy. METHODS: A total of 232 children from Scandinavia, Germany or Italy, fulfilling diagnostic criteria and/or with familial disease and/or HLH-causing mutations, receiving HLH treatment 1994-2008 were included. The relation between clinical findings and early pre-transplant death was examined using the Cox proportional hazards model, with a 4-month right-truncation of the outcome. Patients were censored at last follow-up or transplant. Statistically significant predictors were adjusted for sex, age and each other. RESULTS: The following features were significantly associated with adverse outcome: hyperbilirubinaemia (>50 µmol/L; adjusted hazard ratio (aHR) 3.2; 95% confidence interval 1.3-8.1, p = 0.011), hyperferritinaemia (>2000 µg/L; aHR 3.2; 1.2-8.6, p = 0.019), cerebrospinal fluid pleocytosis (>100 × 10(6) /L; aHR 5.1; 1.4-18.5, p = 0.012) at diagnosis, and thrombocytopenia (<40 × 10(9) /L; aHR 3.4; 1.1-10.7, p = 0.033), and hyperferritinaemia (>2000 µg/L; aHR 10.6; 1.2-96.4, p = 0.037) 2 weeks into therapy. Non-improvement of fever, anaemia and/or thrombocytopenia also had adverse impact. CONCLUSION: There seem to be easily available clinical predictors of early mortality in HLH patients, which may help guide treatment decisions.

Getting the grip on nonspecific treatment effects: emesis in patients randomized to acupuncture or sham compared to patients receiving standard care.

BACKGROUND: It is not known whether or not delivering acupuncture triggers mechanisms cited as placebo and if acupuncture or sham reduces radiotherapy-induced emesis more than standard care. METHODOLOGY/PRINCIPAL FINDINGS: Cancer patients receiving radiotherapy over abdominal/pelvic regions were randomized to verum (penetrating) acupuncture (n = 109; 99 provided data) in the alleged antiemetic acupuncture point PC6 or sham acupuncture (n = 106; 101 provided data) performed with a telescopic non-penetrating needle at a sham point 2-3 times/week during the whole radiotherapy period. The acupuncture cohort was compared to a reference cohort receiving standard care (n = 62; 62 provided data). The occurrence of emesis in each group was compared after a mean dose of 27 Gray. Nausea and vomiting were experienced during the preceding week by 37 and 8% in the verum acupuncture group, 38 and 7% in the sham acupuncture group and 63 and 15% in the standard care group, respectively. The lower occurrence of nausea in the acupuncture cohort (verum and sham) compared to patients receiving standard care (37% versus 63%, relative risk (RR) 0.6, 95 % confidence interval (CI) 0.5-0.8) was also true after adjustment for potential confounding factors for nausea (RR 0.8, CI 0.6 to 0.9). Nausea intensity was lower in the acupuncture cohort (78% no nausea, 13% a little, 8% moderate, 1% much) compared to the standard care cohort (52% no nausea, 32% a little, 15% moderate, 2% much) (p = 0.002). The acupuncture cohort expected antiemetic effects from their treatment (95%). Patients who expected nausea had increased risk for nausea compared to patients who expected low risk for nausea (RR 1.6; Cl 1.2-2.4). CONCLUSIONS/SIGNIFICANCE: Patients treated with verum or sham acupuncture experienced less nausea and vomiting compared to patients receiving standard care, possibly through a general care effect or due to the high level of patient expectancy. TRIAL REGISTRATION: ClinicalTrials.gov NCT00621660.

Couples' communication before the wife's death to cancer and the widower's feelings of guilt or regret after the loss - a population-based investigation.

AIM: To investigate the association between couples' communication before the wife's death to cancer and the widower's feelings of guilt and regret after the loss, in a population-based data. METHODS: Men (n=907) younger than 80 years and living in Sweden, who had lost their wives due to cancer, were asked 4-5 years after their loss to answer an anonymous postal questionnaire it included questions about the couple's end-of-life communication during the last 3 months of life and the widower's feelings of guilt or regret during the first 6 months after the wife's death. RESULTS: During the last 3 months of their wives' lives, men who had not talked about the impending death with their wives had a higher risk of experiencing feelings of guilt than men who did talk (relative risk (RR) 2.0, 95% confidence interval [CI] 1.2-3.4). Men who were not able to spend as much time as they wished with their wives had an increase in the risk of having feelings of guilt twice that of men who spent time (RR 2.0 95% CI 1.5-2.7). Men who did not talk with their wives about how they could cope practically or emotionally after the death had elevated risks of guilt feelings compared with men who talked (RR 1.8, 95% CI 1.0-3.0; RR 1.7, 95% CI 1.0-2.9, respectively). Men who realised it was too late to discuss the impending death had an increased risk of guilt feelings (RR 4.3, 95% CI 2.9-6.6). Men who thought that not everything had been brought to closure before their wives' deaths had 3.3 times increased risk of guilt feeling (RR 3.3, 95% CI 1.7-6.4). CONCLUSIONS: A man who does not have end-of-life discussions with his wife during the last 3 months before her death from cancer may be subject to a significantly greater risk of experiencing feelings of guilt or regret in widowhood than men who did engage in such discussions.

Loose stools lead to fecal incontinence among gynecological cancer survivors.

BACKGROUND: Many patients treated with radiotherapy to the pelvic region report a change in bowel habits. Loose stools, urgency and fecal incontinence may have a significant impact on daily life and social functioning. MATERIAL AND METHODS: We attempted to follow up 789 women, treated with pelvic radiotherapy for a gynecological cancer during 1991 to 2003 at two departments of gynecological oncology in Sweden. A control group of 478 women from the Swedish Population Registry was also included. As a preparatory study, we made in-depth interviews with 26 women previously treated for gynecological cancer. Based on their narratives, we constructed a study-specific questionnaire including 351 questions and validated it face-to-face. The questionnaire covered questions of physical symptoms originating in the pelvis, demographics, psychological and quality of life factors. In relation to bowel symptoms, 60 questions were asked. RESULTS: Six-hundred and sixteen (78%) gynecological cancer survivors and 344 (72%) control women participated. Two-hundred and twenty-six (37%) cancer survivors reported loose stools at least once a week. Eighty-three percent of the survivors with loose stools every day reported defecation urgency with fecal leakage, compared to 20% of cancer survivors without loose stools. Cancer survivors with loose stools at least once a week were 7.7 times more likely to suffer from defecation urgency with fecal leakage (95% CI 4.4-13.3) compared to those who had loose stools once a month or less. In order to avoid loose stools affected survivors with loose stools often skipped meals (13%), made an active choice of food (47%) and preferentially used prescribed medication (36%). DISCUSSION: There is a relation between loose stools and defecation urgency with fecal leakage among long-term gynecological cancer survivors treated with pelvic radiotherapy. Targeting loose stools can possibly help survivors to decrease frequency of fecal leakage.

Defecation disturbances after cystectomy for urinary bladder cancer.

OBJECTIVE: • To describe and compare long-term defecation disturbances in patients who had undergone a cystectomy due to urinary bladder cancer with non-continent urostomies, continent reservoirs and orthotopic neobladder urinary diversions. PATIENTS AND METHODS: • During their follow-up we attempted to contact all men and women aged 30-80 years who had undergone cystectomy and urinary diversion at seven Swedish hospitals. • During a qualitative phase we identified defecation disturbances as a distressful symptom and included this item in a study-specific questionnaire together with free-hand comments. The patients completed the questionnaire at home. • Outcome variables were dichotomized and the results are presented as relative risks with 95% confidence interval. RESULTS: • The questionnaire was returned from 452 (92%) of 491 identified patients. Up to 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). • A sense of decreased straining capacity was reported by 20% of the men and women with non-continent urostomy and 14% and 8% of those with continent reservoirs and orthotopic neobladders, respectively. CONCLUSIONS: • Of the cystectomized individuals 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). • Those wanting to improve the situation for bladder cancer survivors may consider communicating before surgery the possibility of stool-emptying problems, and asking about them after surgery.

Absorbing information about a child's incurable cancer.

PURPOSE: To assess parents' ability to absorb information that their child's cancer was incurable and to identify factors associated with parents' ability to absorb this information. PATIENTS AND METHODS: An anonymous mail-in questionnaire study was performed as a population-based investigation in Sweden between August and October of 2001. 449 parents who lost a child to cancer 4-9 years earlier (response rate 80%) completed the survey. 191 (43%) of the bereaved parents were fathers and 251 (56%) were mothers. RESULTS: Sixty percent of parents (n = 258) reported that they were able to absorb the information that their child's illness was incurable. Parents were better able to absorb this information when the information was given in an appropriate manner (RR 1.6; CI 1.3-2.0), when they shared their problems with others during the child's illness course (RR 1.4; CI 1.1-1.8) and when they had no history of depression (RR 1.3; CI 1.0-1.8). Parents who reported that they were able to absorb the information were more likely to have expressed their farewells to the child in their desired manner (RR 1.3; CI 1.0-1.5). CONCLUSIONS: Parents who received information that their child's illness was incurable in an appropriate manner are more likely to absorb that information. Whether or not parents are able to absorb the information that their child's cancer is incurable has implications in terms of preparation for the child's impending death.

Advice given by health-care professionals to mothers concerning subsequent pregnancy after stillbirth.

We studied the advice mothers with stillbirths were given concerning a suitable time to become pregnant. A questionnaire was sent in 2001 to mothers with a stillbirth at one of five hospitals in the Stockholm region in Sweden. At three months follow-up, 33 mothers participated and at 12 months 31. The advices varied from waiting one to 12 months. Eleven mothers were advised to trust their own feelings of readiness and six were advised to wait until they had dealt with their grief before becoming pregnant. At one year post-loss, most of the mothers felt that a suitable time for a subsequent pregnancy was as soon as the mother herself wanted. Mothers whose baby had died in utero were given radically different kinds of advice concerning a suitable time for a subsequent pregnancy. The best advice seems to be that the mother should wait until she, herself, feels ready.

Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents.

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.

Diagnostic random bladder biopsies: reflections from a population-based cohort of 538 patients.

OBJECTIVE: To assess whether diagnostic random bladder biopsies and the detection of concomitant carcinoma in situ (CIS) have an impact on the frequency of intravesical bacille Calmette-Guérin (BCG) instillations or radical cystectomy; and whether this affects the cancer-specific survival in patients with pTaG3 or pT1G1-G3 transitional cell carcinoma of the urinary bladder. MATERIAL AND METHODS: A population-based cohort of 538 patients with newly diagnosed bladder cancer was prospectively registered in the Stockholm County during 1995 and 1996 and followed for more than 5 years. RESULTS: Random biopsies were recommended in all patients but the decision to take biopsies was made by the treating urologist and hence performed in 326 out of 538 patients (61%), which revealed concomitant CIS in 47 patients(14%). Sixty out of 103 (58%) patients with pTaG3 or pT1G1-G3 tumours, in whom random biopsies were performed, received intravesical BCG compared with five out of 22 patients (23%) where random biopsies were not taken (p = 0.004). Moreover, 23 out of 103 patients (22%) with pTaG3 or pT1G1-G3 tumours in whom random biopsies were performed underwent radical cystectomy compared with none out of 22 patients (0%) without random biopsies (p = 0.013). The Cox proportional hazard ratio for death due to bladder cancer in patients with pTaG3 or pT1G1-G3 tumours among patients not having versus having undergone random biopsies was 2.5 (95% confidence interval 1.1-5.6). CONCLUSION: Patients diagnosed in Stockholm in 1995 or 1996 with pTaG3 or pT1G1-G3 bladder tumours having undergone random bladder biopsies more frequently underwent BCG treatment and radical cystectomy and had higher cancer-specific survival than patients who did not undergo random biopsies.

Hygiene and urinary tract infections after cystectomy in 452 Swedish survivors of bladder cancer.

OBJECTIVES: To determine whether or not an improved hygiene can lessen the incidence of symptomatic urinary tract infections (UTIs) in patients treated by cystectomy for urinary bladder cancer. PATIENTS AND METHODS: We attempted to contact during their follow-up all men and women aged 30-80 years who had undergone cystectomy and urinary diversion at seven Swedish hospitals. During a qualitative phase we identified hygienic measures and included them in a study-specific questionnaire. The patients completed the questionnaire at home. Outcome variables were dichotomized and the results presented as relative risks (RR) with 95% confidence interval. RESULTS: We received the questionnaire from 452 (92%) of 491 identified patients. The proportion of patients who had a symptomatic UTI in the previous year was 22% for orthotopic neobladder and cutaneous continent reservoir, and 23% for non-continent urostomy diversion. The RR for a UTI was 1.1 (0.5-2.5) for 'never washing hands' before handling with catheters or ostomy material. Patients with diabetes mellitus had a RR of 2.1 (1.4-3.2) for having a symptomatic UTI. CONCLUSIONS: We could not confirm lack of hygiene measures as a cause of UTI for men and women who had a cystectomy with urinary diversion. Patients with diabetes mellitus have a greater risk of contracting a UTI.

Unrelieved symptoms of female cancer patients during their last months of life and long-term psychological morbidity in their widowers: a nationwide population-based study.

AIM: To investigate if a cancer patient's unrelieved symptoms during the last 3 months of life increase the risk of long-term psychological morbidity in the surviving widower. METHODS: Men (n=907) younger than 80 years and living in Sweden, who had lost their wives due to cancer, were asked 4-5 years after their loss to answer an anonymous postal questionnaire that included questions about their current psychological morbidity and their wives' unrelieved symptoms during the last 3 months of life. RESULTS: If the wife suffered unrelieved anxiety or pain during the last 3 months of her life, then the widowers had a higher risk of sleep-related problems 4-5 years after the loss. When the wife had suffered from anxiety, the relative risks (RR) for the widowers' sleep-related problems were: difficulty falling asleep (RR 1.7, 95% CI 1.0-3.0) and waking up at night with anxiety (RR 4.9, 95% CI 1.5-15.7). When the wife had unrelieved pain, the widowers years later had an increased risk of difficulty falling asleep at night (RR 1.8, 95% CI 1.0-3.3). CONCLUSIONS: The unrelieved patients' end-of-life problems increase the risk of widowers' long-term mental suffering. Efficient and effective diagnoses and treatment of pain and anxiety in terminally ill cancer patients are critical for both patients and their surviving widowers.

Long-term outcomes for mothers who have or have not held their stillborn baby.

OBJECTIVES: to investigate long-term outcomes of mothers who have or have not held their stillborn baby, and predictors of having held the baby. DESIGN: postal questionnaires. SETTING: a nation-wide cohort study of mothers who gave birth to a singleton stillborn baby in Sweden in 1991. PARTICIPANTS: 314 out of 380 women answered the questionnaire and 309 reported whether or not they had held their baby. MEASUREMENTS: scales measuring anxiety, depression and well-being. FINDINGS: 126 (68%) mothers of 185 babies stillborn after 37 gestational weeks had held their baby and 82 (68%) mothers of 120 babies stillborn at gestational weeks 28-37 had also done so. Compared with mothers who agreed completely with the statement that staff gave enough support to hold the baby, mothers who did not agree were less likely to have held their baby [relative risk (RR) 4.1; 95% confidence interval (CI) 2.7-6.1], and mothers with a low level of education were less likely to have held their baby than mothers with a higher level of education (RR 2.2; 95% CI 1.3-3.8). Mothers who had not held their babies born after 37 gestational weeks had an increased risk of headache (RR 4.3; 95% CI 1.1-16.5), and they were less satisfied with their sleep (RR 2.7; 95% CI 1.5-5.0). The increased risk of long-term outcomes associated with not holding, compared with holding, a stillborn baby were less pronounced for women who gave birth at gestational week 28-37 compared with women who gave birth after 37 gestational weeks. KEY CONCLUSIONS: in this cohort, we found an overall beneficial effect of having held a stillborn baby born after 37 gestational weeks, whereas findings for having held a stillborn baby born at gestational weeks 28-37 are uncertain. The attitude of staff influenced whether or not the mother held her stillborn baby. IMPLICATIONS FOR PRACTICE: if the mother is guided by staff in a sensitive way to hold her stillborn term baby, the experience will possibly be beneficial for her in the long term.

Time, symptom burden, androgen deprivation, and self-assessed quality of life after radical prostatectomy or watchful waiting: the Randomized Scandinavian Prostate Cancer Group Study Number 4 (SPCG-4) clinical trial.

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).

Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later.

PURPOSE: To assess unresolved parental grief, the associated long-term impact on mental and physical health, and health service use. PATIENTS AND METHODS: This anonymous, mail-in questionnaire study was performed as a population-based investigation in Sweden between August 2001 and October 2001. Four hundred forty-nine parents who lost a child as a result of cancer 4 to 9 years earlier completed the survey (response rate, 80%). One hundred ninety-one (43%) of the bereaved parents were fathers, and 251 (56%) were mothers. Bereaved parents were asked whether or not, and to what extent, they had worked through their grief. They were also asked about their physical and psychological well-being. For outcomes of interest, we report relative risk (RR) with 95% CIs as well as unadjusted odds ratios and adjusted odds ratios. RESULTS: Parents with unresolved grief reported significantly worsening psychological health (fathers: RR, 3.6; 95% CI, 2.0 to 6.4; mothers: RR, 2.9; 95% CI, 1.9 to 4.4) and physical health (fathers: RR, 2.8; 95% CI, 1.8 to 4.4; mothers: RR, 2.3; 95% CI, 1.6 to 3.3) compared with those who had worked through their grief. Fathers with unresolved grief also displayed a significantly higher risk of sleep difficulties (RR, 6.7; 95% CI, 2.5 to 17.8). Mothers, however, reported increased visits with physicians during the previous 5 years (RR, 1.7; 95% CI, 1.1 to 2.6) as well as a greater likelihood of taking sick leave when they had not worked through their grief (RR, 2.1; 95% CI, 1.2 to 3.5). CONCLUSION: Parents who have not worked through their grief are at increased risk of long-term mental and physical morbidity, increased health service use, and increased sick leave.

Guilt after the loss of a husband to cancer: is there a relation with the health care provided?

BACKGROUND: Feelings of guilt are common after bereavement. We investigated whether feelings of guilt after the loss of a husband to cancer are associated with the health care provided at the time close to and at the moment of death. MATERIALS AND METHODS: The study population consisted of 506 widows of men who died of prostate cancer in 1995 or of urinary bladder cancer in 1995 or 1996 at the ages 45-74 years. We collected information on the received health care at the time of the husband's death from the widows, through a postal questionnaire. RESULTS: Widows who perceived that their husbands did not get enough pain relief had an increased relative risk of 1.7 (95% CI 1.1-2.8), for guilt feelings, compared to widows who felt that their husbands had adequate pain relief. If a widow considered her husband being exposed to less satisfactory care or treatment, she had an almost two-fold increased relative risk, 1.9 (95% CI 1.2-3.1), for guilt feelings after the husband's death, compared to a widow who thought that satisfactory care or treatment was provided. DISCUSSION: Feelings of guilt after bereavement may occur in response to the perception of inadequate health care during the last months and at the actual moment of death of the significant other.

The Internet and prostate cancer patients: searching for and finding information.

OBJECTIVE: To define the characteristics of prostate cancer patients who use the Internet. MATERIAL AND METHODS: In October 2002, 511 prostate cancer patients from Stockholm-Gotland County completed a postal questionnaire consisting of 146 questions regarding use of the Internet, demographic factors, level of information about the disease and its treatment, quality of life and trade-off possibilities. RESULTS: The response rate was 86.5% (n=511) and the mean age of the respondents was 71 years. A total of 210 men (41.1%) had access to the Internet. Eighty-two men (16.4%) had looked for information on prostate cancer, either by themselves or with the aid of others. Among men aged 50-60 years, 39% were Internet users, compared to 8% among men aged 75-80 years; the figures for university graduates versus those who had only attended elementary school were 33% and 3%, respectively. Fifty of the 82 men (61%) who searched for information regarded themselves as being satisfactorily informed by online information. CONCLUSIONS: Of the men in this cohort, 16% searched the Internet for information regarding their prostate cancer. Young and well-educated men utilized the Internet more frequently than others, but they did not find information more often than older and less well-educated men. It is possible that the Internet promotes social inequality in obtaining healthcare in favor of well-educated, highly paid individuals.

Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes.

PURPOSE: It is still uncertain whether or not parents can ever come to terms with the loss of a child and whether professional or social support facilitate the long-term grief process. METHODS: A Swedish population-based study, which sent an anonymous, mail-in questionnaire to parents who had lost a child to a malignancy 4 to 9 years earlier, gained the participation of 449 (80%) of 561 parents. Parents were asked whether, and to what extent, they had worked through their grief. Questions were also asked regarding those who provided parents with support. We examined candidate factors to determine their associations with greater likelihood of working through parental grief. RESULTS: Overall, most parents (74%) stated that they had worked through their grief "a lot" or "completely" at the time of the follow-up. Parents who had shared their problems with others during the child's illness (fathers: relative risk [RR], 3.0; 95% CI, 1.8 to 5.0; mothers: RR 1.9; 95% CI, 1.2 to 2.8) and who had access to psychological support during the last month of their child's life (fathers: RR 1.4; 95% CI, 1.0 to 1.8; mothers: RR 1.3; 95% CI, 1.1 to 1.6) were more likely to have worked through their grief. In cases where health care staff offered parents counseling during the child's last month, the parents were more likely to have worked through their grief (fathers: RR 1.5; 95% CI, 1.2 to 1.8; mothers; RR 1.2; 95% CI, 1.1 to 1.4). CONCLUSION: Most parents eventually work through the grief associated with losing a child to cancer. In the long term, sharing the emotional burden with others facilitates the grieving process.

Parents' intellectual and emotional awareness of their child's impending death to cancer: a population-based long-term follow-up study.

BACKGROUND: We aimed to study care-related determinants of when parents gain awareness of their child's impending death to cancer, and whether the duration of this awareness affects the parents' long-term morbidity. METHODS: Between August 2001 and October 2001, 449 of 561 (80%) parents who had lost a child due to any malignancy in Sweden between Jan 1, 1992, and Dec 31, 1997 (identified on the Swedish Causes of Death Register), answered a 365-item postal questionnaire designed to ascertain when, before the child's actual death, they had become intellectually and emotionally aware of the child's impending death (awareness time). The primary endpoints were intellectual awareness time (defined as time between intellectual realisation that a disease is fatal and the actual time of death) and emotional awareness time (defined as time between emotional realisation that a disease is fatal and the actual time of death). Parents' awareness of less than 24 h was referred to as a short awareness time. FINDINGS: 436 parents answered the question about intellectual awareness and 433 parents answered the question about emotional awareness. 112 parents (26%) reported a short intellectual awareness time and 195 parents (45%) reported a short emotional awareness time. The risk of having short intellectual awareness time was increased if parents had absence of information on their child's fatal condition (mothers relative risk [RR] 3.6 [95% CI 2.3-5.5]; fathers 2.9 [1.8-4.5]) and if curative treatment was used towards the end of life (mothers 4.1 [2.6-6.5]; fathers 2.7 [1.7-4.2]). The risk of short emotional awareness time was increased if parents had absence of information indicating the child would die (mothers 1.5 [1.1-2.0]; fathers 1.8 [1.3-2.5]) and absence of talks about death with the other parent (mothers 1.5 [1.1-2.0]; fathers 1.7 [1.2-2.2]). Compared with fathers who had longer emotional awareness time, fathers with short emotional awareness time had an increased risk of depression (adjusted RR 1.8 [1.0-3.3]) and absence from employment due to sick leave or early retirement (RR 8.5 [1.1-67.8]) at follow-up. This difference was not noted for mothers. INTERPRETATION: Health-care professionals can influence parents' intellectual and emotional awareness of a child's impending death due to cancer. Short emotional awareness increases the risk of long-term depression in bereaved fathers.