Distress, problems, referral wish, and supportive health care use in breast cancer survivors beyond the first year after chemotherapy completion.

PURPOSE: We examined distress levels, problems, referral wish, and supportive health care use in a cross-sectional group of breast cancer survivors at two-time points with a 1-year time interval. Also, factors related to continuing elevated distress were explored. METHODS: Breast cancer survivors, 1-5 years after chemotherapy completion, filled in the Dutch Distress Thermometer/Problem List (DT/PL) and questions on background characteristics at study inclusion (T1). DT/PL responses and health care use were discussed during semi-structured interviews. One year later, re-assessment took place (T2). The data were analyzed by descriptive and univariate analyses. Continuing elevated distress was defined as a DT score ≥ 5 at T1 and T2. RESULTS: Seventy-three survivors completed all questionnaires (response = 84.6%). Eighteen (25%) experienced continuing elevated distress. Fatigue (T1 N = 48 (66%); T2 N = 41 (56%)) and lack of physical fitness (T1 N = 44 (60%); T2 N = 36 (49%)) were most often reported. Time since diagnosis, health care use, and practical, social, emotional and physical problems were significantly associated with continuing elevated distress. Between diagnosis and T1, N = 49(67%) used supportive healthcare services, mostly a psychologist and/or a physical/lymphedema therapist, and between T1 and T2, 39 (53%) did. At T1, 8 (11%) expressed a referral wish and at T2, 11 (16%) did. CONCLUSIONS: Screening and management of distress, problems, and referral wish are important, even years after chemotherapy completion as a substantial proportion of breast cancer survivors continue to report elevated distress and problems. Special attention should be paid to survivors reporting physical problems, especially fatigue and lack of physical fitness, since these problems are most strongly related to continuing elevated distress.

The distress thermometer as a prognostic tool for one-year survival among patients with lung cancer.

INTRODUCTION: The use of patient-reported outcome measures is increasingly advocated to support high-quality cancer care. We therefore investigated the added value of the Distress Thermometer (DT) when combined with known predictors to assess one-year survival in patients with lung cancer. METHODS: All patients had newly diagnosed or recurrent lung cancer, started systemic treatment, and participated in the intervention arm of a previously published randomised controlled trial. A Cox proportional hazards model was fitted based on five selected known predictors for survival. The DT-score was added to this model and contrasted to models including the EORTC-QLQ-C30 global QoL score (quality of life) or the HADS total score (symptoms of anxiety and depression). Model performance was evaluated through improvement in the -2 log likelihood, Harrell's C-statistic, and a risk classification. RESULTS: In total, 110 patients were included in the analysis of whom 97 patients accurately completed the DT. Patients with a DT score ≥5 (N = 51) had a lower QoL, more symptoms of anxiety and depression, and a shorter median survival time (7.6 months vs 10.0 months; P = 0.02) than patients with a DT score <5 (N = 46). Addition of the DT resulted in a significant improvement in the accuracy of the model to predict one-year survival (P < 0.001) and the discriminatory value (C-statistic) marginally improved from 0.69 to 0.71. The proportion of patients correctly classified as high risk (≥85% risk of dying within one year) increased from 8% to 28%. Similar model performance was observed when combining the selected predictors with QoL and symptoms of anxiety or depression. CONCLUSIONS: Use of the DT allows clinicians to better identify patients with lung cancer at risk for poor outcomes, to further explore sources of distress, and subsequently personalize care accordingly.

Melanoma patients' disease-specific knowledge, information preference, and appreciation of educational YouTube videos for self-inspection.

BACKGROUND: Informing and educating melanoma patients is important for early detection of a recurrence or second primary. This study aimed to investigate Dutch melanoma patients' disease-specific knowledge, and their opinions on information provision and the value of e-Health videos. METHODS: All AJCC stage I-II melanoma patients in follow-up between March 2015 and March 2016 at a single melanoma center were invited to complete 19 online questions, addressing respondents' characteristics, knowledge on melanoma, and opinions on melanoma-specific information received and the educational YouTube videos. RESULTS: In total, 100 patients completed the survey (response = 52%); median age was 60 years and 51% were female. Breslow tumor thickness was unknown by 34% and incorrectly indicated by 19%, for presence of ulceration this was 33% and 11%, for mitosis 65% and 14%, and for AJCC stage 52% and 23%, respectively. Only 5% correctly reproduced all four tumor characteristics. Orally delivered information regarding warning signs, severity, treatment possibilities, and importance of self-inspection was clearest for patients, compared to information in the melanoma brochure. According to 77% of patients, YouTube videos regarding self-inspection of the skin and regional lymph nodes had additional value. Altogether, 63% preferred receiving information in multiple ways; 92% orally by their physician, 62% through videos, and 43% through brochures. CONCLUSIONS: Patients' melanoma-specific knowledge appears to be limited. There is an urgent need for further improvement of providing information and patient education. In addition to oral and written information, e-Health videos seem to be a convenient supplemental and easy accessible method for patient education.

Feasibility of implementing the 'Screening for Distress and Referral Need' process in 23 Dutch hospitals.

PURPOSE: In the Netherlands, the three-step process 'Screening for Distress and Referral Need' (SDRN) was developed for helping identifying, and referring cancer patients suffering from clinically relevant distress or needing a referral. This process includes (1) instrument completion, (2) patient-care provider discussion of the responses, and (3) referral based on 1 and 2. The Netherlands Comprehensive Cancer Organisation, location Groningen (IKNL-G), initiated the implementation of SDRN and developed an implementation roadmap, including procedure and materials. This exploratory study examines the feasibility of SDRN implementation in hospitals, seen from healthcare providers' perspective, responsible for implementation, and those executing SDRN. METHODS: Healthcare providers, from 22 hospitals and from 5 oncology departments of the University Medical Center Groningen (=25 % of Dutch hospitals), evaluated their experiences by responding to a 26-item internet survey. RESULTS: Twenty-five participants (response = 93 %) completed the survey. SDRN was implemented in 21 hospitals (implementation = 91 %), in two thirds of these hospitals in more than one patient group. Adoption of IKNL-G's roadmap elements varied between 84 and 100 %. Participants' average satisfaction score with SDRN was 6.5 (possible range = 0-10, range found = 5-8). Significant positive relationships were found between this satisfaction and participants' satisfaction with frequency of SDRN (p = 0.02), and keeping logistical agreements (p = 0.04). Participants were dissatisfied with SDRN's limited current availability to only select patient groups and only certain disease phases. CONCLUSIONS: The implementation of SDRN in daily practice, supported by a pre-developed implementation roadmap, is highly feasible. Continuous attention to SDRN execution, broadening implementation to all forms of cancer, and during the total disease trajectory seems vital to improve healthcare providers' satisfaction.

Structural distress screening and supportive care for patients with lung cancer on systemic therapy: A randomised controlled trial.

INTRODUCTION: Gaining regular insight into the nature and severity of distress by a psychosocial nurse coupled with referral to psychosocial and/or paramedical healthcare provider(s) is an experimental supportive care approach. We sought to examine the effects of this approach on quality of life (QoL), patient's mood and satisfaction, end-of-life care and survival in patients with lung cancer. METHODS: Patients with newly diagnosed or recurrent lung cancer starting systemic therapy were randomly assigned to receive usual care or the experimental approach. Patients were followed up at 1, 7, 13 and 25 weeks after randomisation with the EORTC-QLQ-C30, the European Quality of Life-5D, the Hospital Anxiety and Depression Scale and the Patient Satisfaction Questionnaire-III. Primary outcome was the mean change in the EORTC-QLQ-C30 global QoL-score between 1 and 25 weeks. RESULTS: A total of 223 patients were randomised of whom 111 (50%) completed all four assessments (44% in the usual care group versus 55% in the experimental group). No significant difference was found in the mean change global QoL-score (-2.4, 95% CI: 12.1-7.2; P = 0.61), nor in the other patient-reported outcomes. Fewer patients in the experimental group received chemotherapy shortly before the end-of-life, and median survival was comparable (10.3 versus 10.1 months, P = 0.62). Of the 112 dropouts, 33 died and 79 discontinued participation for other reasons. CONCLUSIONS: This supportive care approach neither improved QoL nor other patient-reported outcomes in patients with lung cancer. However, it reduced the use of chemotherapy shortly before the end of life. Possibly, (late) side effects of systemic therapy may have obscured effects of our intervention on QoL. CLINICAL TRIAL REGISTRATION: NTR3540.

Cancer patients' referral wish: effects of distress, problems, socio-demographic and illness-related variables and social support sufficiency.

BACKGROUND: The present study's aim was to examine effects of cancer patients' perceived distress and problems, socio-demographic and illness-related variables and social support sufficiency on referral wish. METHODS: A cross-sectional group of 1340 patients (response = 51%) completed a questionnaire consisting of the Dutch version of the Distress Thermometer and Problem List, including the referral wish question, and questions on socio-demographic and illness-related variables and perceived social support sufficiency. Univariate and multivariate analyses were performed to investigate the effects of these variables on patients' referral wish. RESULTS: Of the patients who completed the referral wish question (N = 1297), 13% wished and 21% considered a referral, while 66% did not want a referral. Univariate analyses showed that, in comparison with patients not having a referral wish, those having a (maybe) wish were more distressed, reporting more problems in all Problem List domains, younger, more likely not to have children or children living at home, higher educated, more likely to be employed, under active treatment or recently diagnosed, receiving more intensive treatment and more likely to perceive support received to be insufficient. A final ordinal logistic regression analysis showed independent effects of distress, practical and emotional problems, age and treatment phase on referral wish (χ2 (6) = 205.9; p < 0.001; Nagelkerke's R2 = 0.24). CONCLUSIONS: A third of the patients (maybe) wished a referral. Knowledge of risk variables (particularly increased distress, experience of more practical and emotional problems, younger age and receiving active treatment or recently diagnosed) may support the identification of patients at increased need of additional healthcare services. Copyright © 2016 John Wiley & Sons, Ltd.

Distress, problems and referral wish of cancer patients: differences according to relationship status and life phase.

OBJECTIVE: The aim of this study is to examine differences in distress, problems and referral wish in cancer patients according to relationship status and life phase. METHODS: A cross-sectional group of 1340 patients (response = 51%) completed socio-demographic and illness-related questions, and the Dutch version of the Distress Thermometer and Problem List that also assesses desire for additional care (yes, maybe and no). Relationship status was categorized into six groups (married, cohabiting, LAT (=living-apart-together: have a partner but live alone), divorced, widowed or single) and age into young (18-50), middle aged (51-65) and older (65+) cohorts. RESULTS: Relationship status and life phase were independently related to high distress, referral wish and accordance between the latter two. Single and LAT patients were around two times more likely than married patients to be highly distressed, and wanting additional care. The same was found for younger patients as compared to 65+ patients. Whereas high distress is usually not a strong indication for additional care needs, single, LAT and younger patients most often wanted care when they were highly distressed. CONCLUSION: Health care professionals who implement distress screening in practice can expect a higher need for additional care in single and LAT patients, but only when they are younger or middle aged. The benefit of having a partner around on a daily basis seems less important in dealing with cancer-related problems when patients are older.

Cutaneous melanoma: medical specialists' opinions on follow-up and sentinel lymph node biopsy.

BACKGROUND: The purpose, frequency and content of follow-up (FU) visits have been widely debated for all common malignancies, including melanoma. The aim was to gain insight into Dutch medical specialists' opinions on melanoma FU and to assess their views on sentinel lymph node biopsy (SLNB). METHODS: All members of the Dutch Society of Surgical Oncology and the Dutch Society of Dermatology and Venereology were invited to complete a web-based questionnaire, consisting of 25 questions addressing the following topics: 1) respondent characteristics, 2) knowledge of national melanoma guideline, 3) opinions on melanoma FU, and 4) view on the significance of SLNB. RESULTS: A total of 378 respondents (response = 37%) started the survey, including 173 surgeons (46%) and 205 dermatologists (54%). Of these, 97% and 92% agreed that the purpose of FU is detection of local recurrence and second primary, respectively. Concerning frequency of FU in the first 10 years after diagnosis, 42% preferred a less frequent FU than indicated by the current guideline, while 4% preferred more frequent FU. Overall, twenty-five percent agreed that the standard diagnostics of cutaneous melanoma should include a SLNB, the percentage was highest amongst surgical residents (44%). CONCLUSION: The majority of specialists consider melanoma FU to be primarily an instrument to detect recurrences and secondary primaries. The frequency of FU, as prescribed by the current guideline, could be reduced according to 42%. The importance of SLNB seems to be insufficiently addressed in the Dutch guideline and by Dutch medical specialists despite its role in the AJCC staging system.

Mediators of physical exercise for improvement in cancer survivors' quality of life.

OBJECTIVE: Mediating mechanisms of a 12-week group-based exercise intervention on cancer survivors' quality of life (QoL) were examined to inform future exercise intervention development. METHODS: Two hundred nine cancer survivors ≥ 3 months posttreatment (57% breast cancer) aged 49.5 (± 10.4) years were assigned to physical exercise (n = 147) or wait-list control (n = 62). QoL, fatigue, emotional distress, physical activity, general self-efficacy and mastery were assessed at baseline and post-intervention using questionnaires. Path analysis was conducted using Mplus to explore whether improved physical activity, general self-efficacy and mastery mediated the effects of exercise on fatigue and distress and consequently QoL. RESULTS: The intervention was associated with increased physical activity (ß = 0.46, 95% confidence interval (CI) = 0.14;0.59), general self-efficacy (ß = 2.41, 95%CI = 0.35;4.73), and mastery (ß = 1.75, 95%CI = 0.36;2.78). Further, the intervention had both a direct effect on fatigue (ß = -1.09, 95%CI = -2.12;0.01), and an indirect effect (ß = -0.54, 95%CI = -1.00;-0.21) via physical activity (ß = -0.29, 95%CI = -0.64;-0.07) and general self-efficacy (ß = -0.25, 95%CI = -0.61;-0.05). The intervention had a borderline significant direct effect on reduced distress (ß = -1.32, 95%CI = -2.68;0.11), and a significant indirect effect via increased general self-efficacy and mastery (ß = -1.06, 95%CI = -1.89;-0.38). Reductions in fatigue (ß = -1.33, 95%CI =-1.85;-0.83) and distress (ß = -0.86, 95%CI = -1.25;-0.52) were associated with improved QoL. Further, increased physical activity was directly associated with improved QoL (ß = 3.37, 95%CI = 1.01;5.54). CONCLUSION: The beneficial effect of group-based physical exercise on QoL was mediated by increased physical activity, general self-efficacy and mastery, and subsequent reductions in fatigue and distress. In addition to physical activity, future interventions should target self-efficacy and mastery. This may lead to reduced distress and fatigue, and consequently improved QoL of cancer survivors.

Screening for psychosocial distress in patients with long-term home parenteral nutrition.

BACKGROUND & AIMS: Long-term home parenteral nutrition (HPN) may cause distress and negatively affect quality of life (QoL). The HPN version of the Distress Thermometer and Problem List (DT/PL) was developed to evaluate distress during HPN. This study validates the DT/PL, examines referral wish for additional care, assesses opinions on the DT/PL, and studies risk factors for distress and referral wish. METHODS: Dutch and Scottish patients completed questions on socio-demographic and HPN-related general characteristics, the DT/PL, referral wish, the Hospital Anxiety and Depression Scale, and opinions on the DT. RESULTS: The HPN version of the DT/PL seemed valid and the PL sufficiently reliable. Cut-off score appeared to be 6. Consequently, 45% of patients were diagnosed as clinically distressed. Fifty-three percent had a referral wish. Emotional and physical problems were most strongly associated with distress. Not being able to work related to elevated distress. Female gender and co-morbidity related to referral wish. Opinions on the DT were generally positive. CONCLUSION: The DT/PL appears to be a good instrument to regularly gain insight into distress and referral wish in HPN patients. Use of the DT/PL facilitates support to patients who most need and want it, thus improving quality of care and QoL.

Do cancer and treatment type affect distress?

OBJECTIVE: We examined differences in distress levels and Distress Thermometer (DT) cutoff scores between different cancer types. The effect of socio-demographic and illness-related variables on distress was also examined. METHODS: One thousand three hundred fifty patients (response = 51%) completed questions on socio-demographic and illness-related variables, the Dutch version of the DT and Problem List, and the Hospital Anxiety and Depression Scale. Receiver operating characteristics analyses were performed to determine cancer specific cutoff scores. Univariate and multivariate effects of socio-demographic and illness-related variables (including cancer type) on distress were examined. RESULTS: Prostate cancer patients reported significantly lower DT scores (M = 2.5 ± 2.5) and the cutoff score was lower (≥ 4) than in patients with most other cancer types (M varied between 3.4 and 5.1; cutoff ≥ 5). Multivariate analyses (F = 10.86, p < .001, R(2) = 0.08) showed an independent significant effect of four variables on distress: intensive treatment (ß = .10, any (combination of) treatment but surgery only and 'wait and see'); a non-prostate cancer type (ß = -.17); the interaction between gender and age (ß = -.12, highest distress in younger women as compared with older women and younger and older men); and the interaction between cancer type and treatment intensity (ß = .08, lowest scores in prostate cancer patients receiving non-intensive treatment as compared with their counterparts). CONCLUSIONS: Distress and cutoff score in prostate cancer patients were lower than in patients with other cancer types. Additionally, younger women and patients receiving treatment other than surgery only or 'wait and see' are at risk for higher distress. These results can help identify patients possibly in need of referral to professional psychosocial and/or allied health care.

Burnout, engagement and resident physicians' self-reported errors.

Burnout is a work-related syndrome that may negatively affect more than just the resident physician. On the other hand, engagement has been shown to protect employees; it may also positively affect the patient care that the residents provide. Little is known about the relationship between residents' self-reported errors and burnout and engagement. In our national study that included all residents and physicians in The Netherlands, 2115 questionnaires were returned (response rate 41.1%). The residents reported on burnout (Maslach Burnout Inventory-Health and Social Services), engagement (Utrecht Work Engagement Scale) and self-assessed patient care practices (six items, two factors: errors in action/judgment, errors due to lack of time). Ninety-four percent of the residents reported making one or more mistake without negative consequences for the patient during their training. Seventy-one percent reported performing procedures for which they did not feel properly trained. More than half (56%) of the residents stated they had made a mistake with a negative consequence. Seventy-six percent felt they had fallen short in the quality of care they provided on at least one occasion. Men reported more errors in action/judgment than women. Significant effects of specialty and clinical setting were found on both types of errors. Residents with burnout reported significantly more errors (p < 0.001). Highly engaged residents reported fewer errors (p

Burnout among Dutch medical residents.

We examined levels of burnout and relationships between burnout, gender, age, years in training, and medical specialty in 158 medical residents working at the University Medical Center Groningen, the Netherlands. Thirteen percent of the residents met the criteria for burnout, with the highest percentage of burnout cases among medical residents in Psychiatry. Significantly more male residents than female residents suffered from severe burnout. Medical residents reported significantly lower mean scores on personal accomplishment than medical specialists and other health care workers; they also reported lower mean scores on emotional exhaustion than medical specialists. Male residents had significantly higher depersonalization scores than female residents. Positive significant relationships were found between personal accomplishment and age and years in training. Obstetrics & Gynecology residents reported significantly more personal accomplishment than residents in Psychiatry, Internal Medicine, Pediatrics, and Anesthesiology. Residents in Psychiatry had significantly lower scores on personal accomplishment than residents in Internal Medicine. Our findings show that burnout is present in a small but significant number of medical residents.

Family functioning and adolescents' emotional and behavioral problems: when a parent has cancer.

BACKGROUND: This article focuses on possible relationships between functioning of adolescents with a parent diagnosed with cancer 1-5 years earlier and family environment. PATIENTS AND METHODS: In all, 138 patients, 114 spouses and 221 adolescents completed the Family Environment Scale. Additionally, adolescents filled in the Impact of Event Scale and Youth Self-report and parents reported on the adolescents' functioning using the Child Behavior Checklist. RESULTS: Patients and spouses reported that their families differ from the norm; they are more expressive and social, better organized, less controlling and have less conflict. Adolescents reported the same and additionally find their family. Family environment was weakly to moderately strongly negatively related to the adolescents' functioning; family relationships related more strongly to the adolescents' functioning than family structure did. No significant relationship was found between family environment and the adolescents' cancer-related distress. Discrepancy in reports of family environment between parents and between parents and adolescents, in general, did not relate to the adolescents' functioning or distress. Parent-adolescent discrepancy only correlated with adolescent self-reports of their functioning. CONCLUSION: Families with parental cancer functioned positively. Despite this, family functioning seems to be a risk factor for behavioral and emotional problems in adolescents.

The role of social support in burnout among Dutch medical residents.

Burnout levels among medical residents are considered high. A lack of social support has shown to have a direct effect on emotional exhaustion, and depersonalization, two of the three burnout indicators. In this study, we examined the satisfaction of medical residents with social support (emotional, appreciative and informative) received from supervisors, fellow medical residents, nurses and patients. In addition, the correlation between social support and burnout was studied. Medical residents were significantly more dissatisfied with the emotional, appreciative and informative support received from their supervisors compared with fellow residents and nurses (respectively, 13.4+/-4.0 vs. 9.9+/-2.8 and 10.0+/-2.4; 10.0+/-2.9 vs. 7.4+/-2.0 and 7.3+/-1.8; and 7.2+/-2.3 vs. 5.4+/-1.6 and 5.3+/-1.5; p<.001). Significant independent effects were found on emotional exhaustion: from dissatisfaction with emotional support [Beta=.44, p<.001, total R2=.25] and dissatisfaction with appreciative support from supervisors [Beta=.30, p<.01, total R2=.11]. Moreover, dissatisfaction with emotional support from supervisors had an independent significant effect on depersonalization [Beta=.33, p=.001, total R2=.14]. The best predictor of burnout appeared to be dissatisfaction with emotional support received from supervisors. Our results suggest that intervention programs should not only focus on the medical residents, but also on the supervisors to improve their supportive skills.

The role of meaning in the prediction of psychosocial well-being of testicular cancer survivors.

Stressful life events, such as cancer, may threaten the belief that life is meaningful and this may have a negative effect on well-being. This study aimed at: (1) examining meaning in testicular cancer survivors (TCSs); (2) changes in outlook on life after testicular cancer (TC); (3) the contribution of meaning in the prediction of psychosocial well-being and cancer-related distress. A total of 354 TCSs completed relevant questionnaires. Results showed that: (1) TCSs experience their lives as meaningful; (2) most TCSs (60%) report a more positive outlook on life since TC; (3) meaning is the most important predictor for psychosocial well-being, but its relationship with cancer-related distress is weak. These results indicate that the cancer experience did not (permanently) disrupt the sense of meaning in TCSs. Furthermore, results confirm the idea that a sense of meaning has a positive effect on psychosocial well-being. Meaning appeared to have little effect on cancer-related distress. However, previous research has shown that this relationship may be too complex to unravel with a cross-sectional design. Therefore, it is suggested to further investigate the underlying interacting mechanisms between meaning and cancer-related distress.

Quality of life of testicular cancer survivors and the relationship with sociodemographics, cancer-related variables, and life events.

GOALS OF WORK: The aim of this study was to (1) assess the quality of life (QoL) of testicular cancer survivors (TCSs) by comparing them to a reference group; (2) investigate the relationship between the QoL of TCSs and sociodemographics, cancer-related variables, and life events; and (3) identify TCSs at risk for an impaired QoL. PATIENTS AND METHODS: Of the TCSs approached, 50% (n=354) participated and completed a generic QoL questionnaire (RAND-36) once. Time since completion of treatment varied from 3 months to 24 years. MAIN RESULTS: (1) TCSs had significantly higher mean scores on the subscales physical functioning (p=0.02) and pain (p=0.001), but lower mean scores on mental health (p=0.04) and vitality (p<0.001) than a reference group of men. The effect sizes of these differences were small to insignificant. (2) Employment status and chronic disease were the main correlates of the QoL of TCSs. Age, negative life events, type of treatment, and the experience of a second cancer event were moderately associated with some subscales as well. (3) The joint burden of unemployment and a chronic disease was the strongest predictor for an impaired functioning. CONCLUSIONS: On a group level, TCSs experience a good QoL, but a small group appeared to be at risk for an impaired functioning, namely, those who were unemployed and had a chronic disease. The variance explained by the variables studied was low, indicating that more important predictors remain to be identified.

The quality of communication between parents and adolescent children in the case of parental cancer.

BACKGROUND: This study was designed to investigate: (i) parent-adolescent communication in families of cancer patients; (ii) relationships between parent-adolescent communication and posttraumatic stress symptoms (PTSS) in adolescent children; and (iii) associations between parents' illness characteristics and parent-adolescent communication. PATIENTS AND METHODS: A total of 212 adolescents completed the Impact of Event Scale and Parent-Adolescent Communication Scale. RESULTS: Adolescents communicated less openly with mothers with cancer than controls with mothers; this was the only significant difference with the reference group. Daughters communicated more openly with ill parents than with healthy parents. More open communication with healthy parents was related to fewer PTSS in daughters. More problem communication with both parents was related to more PTSS in both sons and daughters. Sons reported more problems in communication with ill parents in case of more intensive treatment or recurrent disease. Daughters experienced less open communication with both parents when ill parents received more intensive treatment. Time since diagnosis was not related to parent-adolescent communication. Multivariate analyses showed that communication patterns specifically affected PTSS of daughters. Problem communication with the healthy parent was the strongest predictor of intrusion while problem communication with the ill parents was the strongest predictor of avoidance. CONCLUSIONS: Parent-adolescent communication in families of cancer patients differs little from that in families not confronted with parental cancer. Problem communication outweighed lack of openness with respect to development of PTSS. Recurrent disease and intensive treatment regimens affected parent-adolescent communication negatively.

One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer.

BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the illness. METHODS: Participants were 83 siblings from 56 families-46 girls and 37 boys, aged 7-18. The assessment took place 1 month to 8 weeks after the diagnosis of cancer in the ill child. The siblings' QoL was assessed with the TNO-AZL children's quality of life questionnaire (TACQOL). Coping strategies were assessed with the Cognitive Coping Strategies Scale for siblings (CCSS-s). Physical problems and eating and sleeping problems that existed before the ill child was diagnosed were determined in a structured interview with the parents. RESULTS: A substantial number of siblings reported impaired cognitive and emotional QoL compared to the reference group. School-aged siblings (7-11 years) reported more trouble with motor functioning than peers. The coping strategy 'predictive control' (maintaining positive expectations regarding the illness) positively predicted siblings' QoL. The presence of health problems before diagnosis was negatively associated with siblings' QoL. Older siblings reported more negative emotions, while girls reported lower social QoL and reliance on 'interpretative control' (trying to understand the illness) was associated with fewer positive emotions. CONCLUSIONS: During the first 2 months after the diagnosis of cancer in a brother or sister, siblings have relatively lower QoL than peers. Health problems that existed before diagnosis may be a predictor of later adjustment problems. Positive expectations about the course of the illness appear to protect siblings from distress. Information about the illness is a delicate issue that requires parental guidance.

Randomized trial of a shared decision-making intervention consisting of trade-offs and individualized treatment information for BRCA1/2 mutation carriers.

PURPOSE: To evaluate a shared decision-making intervention (SDMI) for BRCA1/2 mutation carriers who have to make a choice between screening and prophylactic surgery for breasts and/or ovaries. PATIENTS AND METHODS: The SDMI consisted of two value assessment sessions, using the time trade-off method, followed by individualized treatment information based on (quality-adjusted) life expectancy. After the baseline assessment (2 weeks after a positive DNA test result), women were randomly assigned to the SDMI group (n = 44), receiving the SDMI 2 months after the test result, or to the control group (n = 44). The short- and long-term effects, 3 and 9 months after the test result, were assessed using questionnaires. Data were collected on well-being, treatment choice, and decision-related outcomes. RESULTS: In the short term, the SDMI had no effect. In the long term, with respect to well-being, patients in the SDMI group had less intrusive thoughts (P =.05) and better general health (P =.01) and tended to be less depressed (P =.07). With respect to decision-related outcomes for the breasts, the SDMI group held stronger preferences (P =.02) and agreed more strongly to having weighed the pros and cons (P =.01). No effect was found on treatment choice. In the long term, interaction effects between the SDMI and cancer history were found. The SDMI showed an overall beneficial effect for unaffected women, whereas affected women tended to experience detrimental effects. CONCLUSION: We conclude that the SDMI improved decision making in unaffected BRCA1/2 mutation carriers. Supporting decision making in a systematic way using trade-offs is beneficial for these women.