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Purpose: Little research has been done to identify possible cancer-related fatigue (CRF) subtypes and to classify cancer survivors accordingly. We aimed to identify CRF subtypes in a large population-based sample of (long term) stage I-III colorectal cancer survivors. We also identified factors associated with the CRF subtypes., Methods: Respondents completed the Multidimensional Fatigue Inventory and other validated questionnaires on anxiety and reduced positive affect (anhedonia), sleep quality, and lifestyle factors (body mass index and physical activity). Latent class analysis was used to derive the CRF subtypes. Factors associated with the derived CRF subtypes were determined with multinomial logistic regression., Results: Three CRF classes were identified: class 1 (no fatigue and distress, n = 644, 56%), class 2 (low fatigue, moderate distress, n = 256, 22%), and class 3 (high fatigue, moderate distress, n = 256, 22%). Multinomial logistic regression results show that survivors in class 3 were more likely to be female, were treated with radiotherapy, have comorbid diabetes mellitus, and be overweight/obese than survivors in class 1 (reference). Survivors in classes 2 and 3 were also more likely to have comorbid heart condition, report poorer sleep quality, experience anhedonia, and report more anxiety symptoms when compared with survivors in class 1., Conclusions: Three distinct classes of CRF were identified which could be differentiated with sleep quality, anxiety, anhedonia, and lifestyle factors., Implications for Cancer Survivors: The identification of CRF subtypes with distinct characteristics suggests that interventions should be targeted to the CRF subtype.

Background: Understanding of the physical, functional and psychosocial health problems and needs of cancer survivors requires cross-national and cross-cultural standardization of health-related quality of life (HRQoL) questionnaires that capture the full range of issues relevant to cancer survivors. To our knowledge, only one study has investigated in a comprehensive way whether a questionnaire used to evaluate HRQoL in cancer patients under active treatment is also reliable and valid when used among (long-term) cancer survivors. In this study we evaluated, in an international context, the psychometrics of HRQoL questionnaires for use among long-term, disease-free, survivors of testicular and prostate cancer., Methods: In this cross-sectional study, we recruited long-term survivors of testicular and prostate cancer from Northern and Southern Europe and from the United Kingdom who had participated in two phase III EORTC clinical trials. Participants completed the SF-36 Health Survey, the EORTC QLQ-C30 questionnaire, the QLQ-PR25 (for prostate cancer) or the QLQ-TC26 (for testicular cancer) questionnaires, and the Impact of Cancer questionnaire. Testicular cancer survivors also completed subscales from the Nordic Questionnaire for Monitoring the Age Diverse Workforce., Results: Two hundred forty-two men (66% response rate) were recruited into the study. The average time since treatment was more than 10 years. Overall, there were few missing questionnaire data, although scales related to sexuality, satisfaction with care and relationship concerns of men without partners were missing in more than 10% of cases. Debriefing showed that in general the questionnaires were accepted well. Many of the survivors scored at the upper extremes of the questionnaires, resulting in floor and ceiling effects in 64% of the scales. All of the questionnaires investigated met the threshold of 0.70 for group level reliability, with the exception of the QLQ-TC26 (mean reliability .64) and the QLQ-PR25 (mean reliability .69). The questionnaires were able to discriminate clearly between patients with and without comorbid conditions., Conclusions: The currently available HRQoL questionnaires exhibit acceptable psychometric properties and were well received by patients, but additional efforts are needed to ensure that the full range of survivor-specific issues is assessed.

Background: Trying to simultaneously achieve developmental milestones and cope with a life-threatening disease may place adolescents and young adults (AYAs) at risk for impaired health-related quality of life (HRQoL) later in life. The aim of this study was to examine differences in HRQoL between AYA lymphoma survivors and a normative population and to determine sociodemographic, clinical and long-term symptom-related factors associated with HRQoL., Material and Methods: This study was part of a longitudinal, population-based survey among lymphoma survivors diagnosed between 1999 and 2012. The AYA survivor sample (18-39 years at time diagnosis) was compared to a sex- and age-matched normative population on HRQoL (EORTC-QLQ-C30) and psychological distress (HADS). Multiple linear regression analyses were conducted to determine factors associated with HRQoL among survivors., Results: One hundred and ninety-eight AYA lymphoma survivors (58%) responded to the study invitation. Compared to an age- and sex-matched normative population (N = 380), significantly and clinically relevant poorer HRQoL was observed for AYA lymphoma survivors in seven specific domains of HRQoL: physical, role, cognitive, emotional, social functioning, fatigue and financial difficulties (all p < 0.05). In addition, AYA lymphoma survivors less often had a spouse/partner and more often had a lower educational level compared to the normative population. Linear regression analyses showed that being unemployed, female gender, having one or more comorbid conditions, high levels of fatigue and psychological distress were most strongly associated with HRQoL., Conclusions: These findings identify specific domains of life in which cancer has a significant and long-term impact for AYA lymphoma survivors. Future investigations are needed to identify and test administrations and timing of psychosocial support interventions having potential to reduce long-term late effects in specific HRQoL domains and promote function and adaptability after cancer treatment.

Purpose: The aim of this study is to investigate the factors that influence implementation of Survivorship Care Plans (SCPs) in the intervention arm of the ROGY Care trial by (1) assessing the level of SCP receipt in the ROGY Care trial and (2) identifying patient- and provider-level factors that influence SCP receipt., Methods: Between 2011 and 2015, a pragmatic cluster randomized-controlled-trial was conducted on the effects of automatically generated SCPs. Endometrial (N = 117) and ovarian (N = 61) cancer patients were allocated to 'SCP care', as provided by their SCP care providers (N = 10). Associations between SCP receipt (self-reported SCP receipt and actually generated SCPs), patient-factors (socio-demographic-, clinical-, and personality factors), and care provider factors (profession and a-priori motivation regarding SCP provision) were tested in univariate analysis. The odds ratios of factors influencing self-reported SCP receipt were estimated with a multivariate regression model., Results: Of all patients in the SCP care arm (N = 178), SCPs were generated by the care provider for 90 % of the patients and 70 % of the patients reported that they had received an SCP. Patients with older age, ovarian cancer, type D (distressed) personality, and patients that completed the questionnaire a longer period of time after the SCP consult were more likely to report no SCP receipt., Conclusions: SCP receipt was influenced by patient- but not care-provider factors., Implications for Cancer Survivors: Certain patient groups were less likely to report SCP receipt. Whether all patients are in need of an SCP, requires further investigation. If they do, more efforts need to be made towards the implementation of SCPs., Competing Interests: Compliance with ethical standards The ROGY Care trial was centrally approved by a Medical Research Ethics Committee, as well as by each participating center [22]. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent Informed consent was obtained from all individual participants included in the study. Conflict of interest The authors declare that they have no conflict of interest. Funding The ROGY Care trial is supported with grant no. UVT 2010–4743 from the Dutch Cancer Society. Dr. Nicole Ezendam was supported by a Fellowship grant from the Dutch Cancer Society (#UVT-2014-6632).

Background: The best practice for the organization of follow-up care in oncology is under debate, due to growing numbers of cancer survivors. Understanding survivors' preferences for follow-up care is elementary for designing patient-centred care. Based on data from prostate cancer and melanoma survivors, this study aims to identify: 1) preferences for follow-up care providers, for instance the medical specialist, the oncology nurse or the general practitioner; 2) characteristics associated with these preferences and 3) the preferred care provider to discuss cancer-related problems., Material and Methods: Survivors diagnosed with prostate cancer (N = 535) and melanoma (N = 232) between 2007 and 2013 as registered in The Netherlands Cancer Registry returned a questionnaire (response rate was 71% and 69%, respectively). A latent class cluster model analysis was used to define preferences and a multinomial logistic regression analysis was used to identify survivor-related characteristics associated with these preferences., Results: Of all survivors, 29% reported no preference, 40% reported a preference for the medical specialist, 20% reported a preference for both the medical specialist and the general practitioner and 11% reported a preference for both the medical specialist and the oncology nurse. Survivors who were older, lower/intermediate educated and women were more likely to have a preference for the medical specialist. Lower educated survivors were less likely to have a preference for both the medical specialist and the general practitioner. Overall, survivors prefer to discuss diet, physical fitness and fatigue with the general practitioner, and hereditary and recurrence with the medical specialist. Only a small minority favored to discuss cancer-related problems with the oncology nurse., Conclusion: Survivors reported different preferences for follow-up care providers based on age, education level, gender and satisfaction with the general practitioner, showing a need for tailored follow-up care in oncology. The results indicate an urgency to educate patients about transitions in follow-up care.

Purpose: Cancer survivors construct perceptions of illness as a (mal)adaptive mechanism. These perceptions motivate/drive subsequent self-management behaviors toward symptoms and treatment that influence health outcomes. Negative illness perceptions have been associated with increased mortality in other chronically ill groups. However, this association is under-researched in cancer survivors. We aimed to explore the association between illness perceptions and mortality in stage I-III progression-free colorectal cancer (CRC) survivors., Methods: We used data from the population-based Patient Reported Outcomes Following Initial treatment and Long Term Evaluation of Survivorship (PROFILES) registry of two CRC survivorship studies conducted in 2009 and 2010. We accessed clinical data from the Netherlands Cancer Registry, and mortality data from municipal personal records database. Follow-up was until 31 December 2014. Survivors (n = 1552) completed the Brief Illness Perception Questionnaire. Cox proportional hazard models estimated the association between illness perceptions and mortality., Results: Negative illness perceptions on consequences (adjusted hazard ratio (HRadj) 1.60, 95 % confidence interval (CI) 1.14-2.25) and emotion (HRadj 1.65, 95 % CI 1.18-2.31) were associated with higher mortality, after adjusting for demographic, clinical, and lifestyle factors. Smoking and inadequate physical activity were independently associated with mortality for all Brief Illness Perception Questionnaire (BIPQ) dimensions., Conclusions: Survivors' perceptions of their illness are important as these perceptions may influence health outcomes during survivorship period. Clinical practice needs to identify and address maladaptive illness perceptions to support more adaptive self-management behaviors and enhance survivorship., Implications for Cancer Survivors: Cancer survivors may benefit from interventions that address potentially maladaptive perceptions and encourage more adaptive self-management behaviors., Competing Interests: All authors declare no conflict of interest. Funding The present research is supported in part by a Social Psychology Fellowship from the Dutch Cancer Society to Melissa Thong (SJ401004) and a Cancer Research Award from the Dutch Cancer Society (#UVT-2009-4349) to Lonneke van de Poll-Franse. Data collection for this study was funded by the Netherlands Comprehensive Cancer Organisation, Eindhoven, Netherlands; the Center of Research on Psychology in Somatic diseases (CoRPS), Tilburg University, Netherlands; and an investment subsidy (#480-08-009) of the Netherlands Organization for Scientific Research (The Hague, Netherlands). The funding sources were neither involved in the collection, interpretation, and analysis of the data, nor in the decision for the writing and submission of this report for publication. Ethical approval All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Informed consent Informed consent was obtained from all individual participants included in the study.

Objective: To determine the satisfaction with information received by prostate cancer survivors and associations with health-related quality of life (HRQoL) and illness perception., Methods: A cross-sectional study was performed among 999 patients diagnosed between 2006 and 2009. All patients received a questionnaire on HRQoL (EORTC QLQ-C30), illness perception (B-IPQ) and satisfaction with information provision (EORTC QLQ-INFO-25). Multivariate regression analyses were performed to assess the association between satisfaction with information provision and HRQoL as well as illness perception., Results: Response rate was 70% (N = 697), 34% (N = 222) indicated to be dissatisfied with the information received. Multivariate linear regression analyses showed a significant positive association between satisfaction with information provision and global health (P = <0.001), emotional functioning (P = 0.004), social functioning (P = 0.027), physical functioning (P = 0.002) and role functioning (P = 0.001). Satisfaction was negatively associated with illness perception subscales on consequences (P = 0.020), timeline (P = 0.031), personal control (P = 0.013), treatment control (P < 0.001), illness concern (P < 0.001), coherence (P = 0.001) and emotional representation (P = 0.004). Hence, more satisfied patients reported fewer consequences of disease, illness concern and emotional representation, but higher personal and treatment control and coherence., Conclusions: A third of all prostate cancer survivors reported to be dissatisfied with the information received and scored worse on HRQoL and illness perception. A prospective randomized study is needed to study the effect of an intervention that improves information provision on HRQoL and illness perception outcomes. Copyright © 2015 John Wiley & Sons, Ltd., (Copyright © 2015 John Wiley & Sons, Ltd.)

Purpose: This systematic review aims to summarize the current literature regarding potential effects of having both cancer and diabetes on patient-reported outcomes (PROs) and to provide directions for future research., Methods: MEDLINE, The Cochrane Library, CINAHL, and PsycINFO were searched from inception to January 2015. All English peer-reviewed studies that included patients with both cancer and diabetes and assessed PROs were included. All included studies were independently assessed on methodological quality by two investigators., Results: Of the 3553 identified studies, 10 studies were included and all were considered of high (40%) or adequate (60%) methodological quality. Eight of the 10 studies focused on health-related quality of life (HRQoL), functioning, or symptoms and 2 studies assessed diabetes self-management. Overall, HRQoL and functioning was lower, and symptoms were higher among patients with both cancer and diabetes as compared to having cancer or diabetes alone. Furthermore, one study reported that diabetes self-management was impaired after chemotherapy., Conclusions: Having both cancer and diabetes resulted in worse PROs compared to having either one of the diseases, however, the considerable heterogeneity of the included studies hampered strong conclusions. Future studies are needed as this research area is largely neglected. As the majority of the included studies focused on HRQoL, future research should address the impact of both diseases on other PROs such as depression, patient empowerment and self-management., Implications for Cancer Survivor: Having both cancer and diabetes might result in worse PROs, however, more research is needed as current evidence is scarce.

Purpose: Physical activity can improve health of cancer survivors. To increase physical activity levels among colorectal cancer (CRC) survivors, we need to understand which factors affect physical activity. Therefore, this study examined the longitudinal relationship between symptom-related, functioning-related, and psychological barriers and socio-demographic and clinical factors with physical activity among CRC survivors., Methods: CRC survivors identified from the population-based Eindhoven Cancer Registry (ECR) diagnosed between 2000 and 2009 were included. Survivors completed validated questionnaires measuring moderate-to-vigorous physical activity (MVPA) and barriers in 2010(T1), 2011(T2), and 2012(T3). Linear-mixed models and linear regression techniques were used., Results: Response rates were 74 % (N = 2451, T1); 47 % (N = 1547, T2); and 41 % (N = 1375, T3). Several factors were negatively associated with MVPA: symptom-related barriers (e.g., fatigue, dyspnea, chemotherapy side effects, pain, appetite loss, and weight loss); psychological barriers (i.e., depressive symptoms and anxiety); functioning-related barriers (e.g., low physical or role functioning, unfavorable future perspective); socio-demographic (i.e., older age, female, no partner); and clinical factors (i.e., obesity). However, no within-subject effects were significantly associated with MVPA. Groups of functioning-related barriers, socio-demographic factors, symptom-related barriers, psychological barriers, and clinical factors explained 11, 3.9, 3.8, 2.4, and 2.2 % of the variance in MVPA at T1, respectively., Conclusions: Several functioning-related and symptom-related barriers and few socio-demographic factors were associated with physical activity among CRC survivors. Future interventions to promote physical activity among CRC survivors could benefit by taking into account functioning aspects and symptoms of cancer and its treatment, and assess the causal direction of these associations.

Background: Dissatisfaction with information provided by healthcare providers may be a reason for cancer survivors to seek health information on the Internet and may also result in more symptoms of anxiety and depression among this population., Objective: The aim of this study was to investigate whether anxious and depressive symptoms are associated with satisfaction with information provision and Internet use among cancer survivors., Methods: All individuals diagnosed with endometrial or colorectal cancer between 1998 and 2007 or lymphoma or multiple myeloma between 1999 and 2008 as registered in the Eindhoven Cancer Registry were invited for participation. In total, 4 446 survivors received a questionnaire including the 25-item European Organisation for Research and Treatment of Cancer Quality of Life Group Information questionnaire and Hospital Anxiety and Depression Scale; 69% responded (n = 3080)., Results: Having anxious (odds ratio [OR], 0.7; 95% confidence interval [CI], 0.5-0.9; P < .05) or depressive symptoms (OR, 0.5; 95% CI, 0.4-0.7; P < .001), or both (OR, 0.4; 95% CI, 0.4-0.7; P < .001) were negatively associated with experienced helpfulness of the received information. Having depressive symptoms or having both depressive and anxious symptoms were negatively associated with satisfaction with information (OR, 0.5; 95% CI, 0.4-0.7; OR, 0.5; 95% CI, 0.4-0.7, respectively; P < .001). Having depressive symptoms was negatively associated with disease-related Internet use (OR, 0.69; 95% CI, 0.5-0.9; P < .05)., Conclusion: The results may indicate that information provision is suboptimal, either because it is not adjusted to the mental health status of cancer patients or because it is unsatisfactory and thereby causing anxious and depressive symptoms among cancer patients., Implications for Practice: More attention should be paid to optimally adjust the information provision to the individual needs of the cancer patients for better mental health.

In the present study, we aimed to describe dietary changes made post-diagnosis and current dietary supplement use by survivors of colorectal cancer (CRC), and explore the underlying motives for these lifestyle habits. Cross-sectional analyses were performed for 1458 stage I-IV CRC survivors of the Patient Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship (PROFILES) registry, diagnosed between 2000 and 2009. Lifestyle, sociodemographic and clinical information was collected. Prevalence of and motivations for dietary changes and supplement use were assessed. Associations between lifestyle, sociodemographic and clinical variables were analysed by multivariable logistic regression. CRC survivors (57% male) were on average 70 (SD 9) years of age and diagnosed 7 (SD 3) years ago. Dietary changes post-diagnosis were reported by 36% of the survivors and current supplement use by 32%. Motivations for dietary changes were mostly cancer-related (44% reported 'prevention of cancer recurrence' as the main reason), while motivations for supplement use were less frequently related to the cancer experience (38% reported 'to improve health and prevent disease in general' as the main reason). Dietary changes were significantly associated with dietary supplement use (OR 1.5, 95% CI 1.1, 2.1). Survivors who had received dietary advice, were non-smokers, under 65 years of age, and had no stoma were more likely to have changed their diet. Survivors who were female, had multiple co-morbidities, and no overweight or obesity were more likely to use supplements. In conclusion, many CRC survivors alter their diet post-diagnosis and use dietary supplements, in part for different reasons. Insights into motivations behind these lifestyle habits and characteristics of CRC survivors adopting these habits can improve the tailoring of lifestyle counselling strategies.

Background: Studies show a cross-sectional association between physical activity (PA) and fatigue among lymphoma cancer patients. However, few longitudinal studies have examined whether PA has a sustained effect on fatigue over time., Purpose: To examine the longitudinal relationship between PA and fatigue., Methods: All living individuals diagnosed with lymphoma between 1999 and 2010 as registered by the Dutch population-based Eindhoven Cancer Registry received a questionnaire on three time points. Generalized linear mixed models were used to estimate the independent effects of PA on fatigue., Results: PA and fatigue levels did not differ between patients short-term (< 1 year) and long-term after diagnosis (1-5 years or > 5 years). PA behavior was relatively constant over time with 84% of the patients meeting the Dutch PA guidelines at all assessment periods. Fatigue scores also remained fairly stable over time with 46% of the patients never being fatigued and 29% always being fatigued. Multivariate analyses showed that patients who met the PA guidelines scored 6.2 (95% CI 3.1-9.2) points lower on total fatigue over time (between subject effect; p < 0.01), compared to patients not meeting PA guidelines., Conclusion: During a period of two years, PA and fatigue levels were rather stable within lymphoma patients. Patients who met the PA guidelines reported lower levels of fatigue compared to those not meeting the guidelines, which appeared to be a constant association over time. The observed association between PA and fatigue underlines the importance to focus upon physical training in the care of cancer patients.

Purpose: This study assesses the effect of sending a Survivorship Care Plan (SCP) to primary care physicians (PCP) on the communication of the PCP with the medical specialist and the patient and to describe PCPs' opinions regarding the SCP., Methods: In a pragmatic cluster randomized controlled trial conducted in 12 hospitals, the PCP of endometrial and ovarian cancer patients received usual information, while in addition the SCP-care arm received a copy of the patient's SCP., Results: A questionnaire was returned by 266 PCPs (76%). One third of the PCPs in the SCP-care arm indicated having received an SCP. PCPs in the SCP-care arm were more likely to have had personal contact with the medical specialist (52 vs. 37%, p = 0.01) but were equally satisfied with the information as PCPs in the usual care arm (7.2 vs. 6.9 on a scale from 1 to 10, p = 0.25). Of all PCPs, 82% indicated they would want to receive an SCP in the future. A quarter of the PCPs who received an SCP reported that the SCP supported contact with the patient. However, the SCP was found too long., Conclusions: Supplying an SCP to PCPs potentially has a positive effect on the communication between the PCP and the medical specialist. The SCP should be concise and focused on PCPs' needs, such as contact information and tailored information on patient diagnosis, treatment, and possible consequences., Implications for Cancer Survivors: In the light of transition of cancer care to PCPs, survivors may benefit from improved information provision and communication.

The increasing number of longer-living patients with diffuse large B-cell lymphoma (DLBCL) and serious side effects of treatment urged us to study the health-related quality of life (HRQoL) and persistent (treatment-related) symptoms in unselected patients after different treatment modalities and compare HRQoL of patients with a normative population. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with DLBCL from 2004 to 2010. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) was completed twice, with a 1-year interval. Detailed data on treatment were extracted from the Population-based HAematological Registry for Observational Studies. Two hundred fifty-six patients responded (84 %, T1). Compared to patients treated with rituximab combined with cyclophosphamide, doxorubicin, vincristine, and prednisone every 21 days ((R-)CHOP21), those who underwent (R-)CHOP14 more often reported tingling in the hands and feet (27 vs 42 %, p = 0.02) and fatigue (35 vs 46 %, p = 0.03) and reported a lower global health status/HRQoL. Mean HRQoL was statistically and clinically relevantly lower among DLBCL patients compared to a normative population (p < 0.01). Persistent tingling in hands/feet was reported more often by older patients and patients treated with (R-)CHOP14 independently of the other characteristics. Furthermore, patients who reported symptoms exhibited significantly lower HRQoL compared to patients without symptoms/worries. Patients treated with (R-)CHOP14 reported more neuropathic symptoms, more fatigue, and a lower HRQoL than patients treated with (R-)CHOP21. Alertness for persistent symptoms that occur during and after treatment of DLBCL patients is needed and may help to avoid lasting negative influence on their HRQoL.

Objectives: The increasing number of longer living patients with follicular lymphoma (FL) and serious side effects of treatment urged us to study the health-related quality of life (HRQoL) and persistent (treatment-related) symptoms in unselected patients after different treatment modalities and compare HRQoL of patients with a normative population., Methods: The population-based Eindhoven Cancer Registry was used to select patients diagnosed with FL during 2004-2010. The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) was completed twice, with a 1-yr interval. This questionnaire was also completed by an age- and sex-matched normative population (N = 580). Detailed data on treatment were extracted from the cancer registry and Population-based HAematological Registry for Observational Studies (PHAROS)., Results: Of the 181 patients who were invited, 148 responded (82%, T1). Patients treated with immunochemotherapy reported clinically relevant higher mean fatigue scores than those who underwent radiotherapy (P = 0.02). No differences were observed on the other HRQoL scales between treatment groups. Mean HRQoL scores were worse for FL patients treated with immunochemotherapy compared with a normative population (P < 0.01). A quarter to 50% of patients persistently reported to be slowed down, lethargic, or persistently worried about future health or was limited in social activities. Subsequently, patients reporting these symptoms/worries had a lower global health status/HRQoL., Conclusion: Alertness for persistent symptoms that occur during and after treatment of FL patients is needed and may help to avoid lasting negative influence on their HRQoL., (© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Purpose: Cardiovascular disease (CVD) is the most common nonmalignant cause of death in Hodgkin lymphoma (HL) survivors, especially after mediastinal irradiation. The role of screening for CVD in HL survivors is unclear, but confrontation with risks of CVD may have a negative influence on health-related quality of life (HRQL). As part of a phase 2 screening study using computed tomography angiography (CTA) among HL survivors, an HRQL analysis was done to evaluate the emotional and practical burden and perceived benefits of screening and the effect of CVD-specific counseling on patient satisfaction., Methods and Materials: Patients who participated in the screening study also took part in the HRQL study. The impact of undergoing screening was evaluated with a 9-item questionnaire, and impact on HRQL with the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Core Questionnaire C30, version 3.0. The effect of counseling of CVD on perceived provision of information was evaluated with EORTC INFO-25. All questionnaires were completed at baseline and after screening., Results: Baseline questionnaires were received from 48 participants, and 43 completed questionnaires after screening. Mean age was 47 years, and mean time since diagnosis was 21 years. Of the total, 93% of subjects were content with participating, and 80% did not find the emphasis placed on late effects burdensome, although screening did have a small impact on social functioning and global quality of life. Perceived information on disease, medical tests, and treatment increased significantly after screening (P<.01). Differences were clinically relevant. There were no differences in perceived information between patients with and without screen-detected CVD., Conclusions: Screening was evaluated favorably, whether CTA showed abnormalities or not. Extensive counseling resulted in substantially increased provision of information and improved information satisfaction. Screening by means of CTA and subsequent cardiac intervention was highly valued, and the benefits were felt to outweigh the emotional and practical burden., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Objectives: In this pilot study we evaluated the feasibility of and methods for assessing the quality of life of long term survivors of European Organisation for Research and Treatment of Cancer (EORTC) phase III clinical trials. Here we report the results pertaining to the feasibility of conducting such research., Methods: In this cross-sectional study, we recruited long-term, disease-free survivors from two mature EORTC clinical trials in testicular and prostate cancer from centres in Northern and Southern Europe, and the United Kingdom (UK)., Results: A number of challenges were encountered in recruiting participating centres, obtaining medical ethical approval and in recruiting survivors and collecting the health-related quality of life (HRQoL) data in a timely manner. The efficiency with which the study could be conducted varied widely across centres and countries. Time to obtain medical ethical approval for the study ranged from 1.5 to 25 months. We encountered most problems with ethical approval in the UK, Italy and Belgium. In most cases, data collection was completed within 3 months (range 10 weeks-1 year). Completed questionnaires were obtained from 68% and 56%, respectively, of the testicular and prostate cancer survivors who were approached., Conclusions: HRQoL research among long-term survivors of EORTC phase III clinical trials is possible, but the process of ethical approval and data collection is a lengthy one. To minimise many of the logistical problems, long-term follow-up of patients should be an integral part of future clinical trials. Moreover, regulations governing medical ethical approval for clinical research within the EU should be carefully evaluated to facilitate long-term follow-up of cancer survivors in Europe., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Purpose: Previous studies have merely investigated oncology providers' a priori attitudes toward SCPs. The purpose of the current study was to longitudinally evaluate oncology providers' expectations and actual experiences with the use of an automatically generated Survivorship Care Plan (SCP) in daily clinical practice., Methods: Between April 2011 and October 2012, the participating oncology providers (i.e., gynecologists, gynecologic oncologists, oncology nurses) provided usual care or SCP care to 222 endometrial and 85 ovarian cancer patients included in the Registrationsystem Oncological GYnecology (ROGY) Care trial. All (n = 43) oncology providers in both arms were requested to complete a questionnaire before and after patient inclusion regarding their expectations and evaluation of SCP care., Results: Before patient inclusion, 38 (88%; 21 SCP, 17 usual care), and after patient inclusion, 35 (83%; 20 SCP, 15 usual care) oncology providers returned the questionnaire. After patient inclusion, oncology providers were generally satisfied with the SCP (M = 7.1, SD = 1.3, with 1 = not at all-10 = very much) and motivated to keep using the SCP (M = 7.9, SD = 1.5). Most providers (64%) encountered barriers. Twenty-five percent felt they used more time for consultations (M = 7.3 min, SD = 4.6). However, self-reported consultation time did not differ between before (M = 21.8 min, SD = 11.6) and after patient inclusion (M = 18.7, SD = 10.6; p = 0.22) or between SCP care (M = 18.5, SD = 10.3) and usual care (M = 22.0, SD = 12.2; p = 0.21)., Conclusions: Oncology providers using the SCP were generally satisfied and motivated to keep using the SCP. However, the findings of the current study suggest that even when the SCP can be generated automatically, oncology providers still have difficulties with finding the time to discuss the SCP with their patients., Implications for Cancer Survivors: If SCP care is indeed effective, overcoming the perceived barriers is needed before large-scale implementation in order for cancer survivors to fully benefit from the potential advantages of SCPs.

Objective: The goal of this study is to examine the relationship between socioeconomic status (SES) and both positive and negative mental health (MH) outcomes in a population-based sample of colorectal cancer survivors. On the basis of theoretical conceptualizations of trauma and posttraumatic growth, low SES was hypothesized to be positively associated with both greater negative MH outcomes (e.g., distress) and greater positive MH outcomes (e.g., growth)., Methods: Colorectal cancer survivors (n = 1300; 57% male; mean age 69.4 and 4.0 years post-diagnosis) were recruited using a regional, population-based cancer registry in the Netherlands and completed a questionnaire assessing current negative and positive MH outcomes. Low, medium, and high SES respondents were identified using an area-level indicator of SES based on aggregated individual fiscal data on monetary home value and household income., Results: Analysis of covariance and logistic regression analyses indicated that low SES was a risk factor for greater negative MH outcomes. Relative to high SES survivors, low SES survivors reported poorer status on nine indices of MH, and high SES survivors were about 50% less likely to report clinically important levels of anxiety and depression. Results provided partial support for the hypothesis low SES was a 'risk' factor for greater positive MH outcomes. Relative to high SES survivors, low SES survivors reported greater positive MH outcomes on 2 of 5 positive MH indices examined (Positive Self-Evaluation, Meaning of Cancer)., Conclusions: Study findings are the first to suggest that low SES might increase the likelihood of both greater negative as well as positive MH outcomes in cancer survivors., (Copyright © 2013 John Wiley & Sons, Ltd.)

Background: The aims of this study were (i) to obtain insight into the prevalence of fatigue among short- and long-term thyroid cancer (TC) survivors, by comparing a sample of TC survivors with an age- and sex-matched normative population, and (ii) to investigate which demographic, clinical, and TC-specific health-related quality of life (HRQoL) characteristics were associated with fatigue., Methods: All patients found to have TC between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a cross-sectional survey on fatigue (Fatigue Assessment Scale), TC-specific HRQoL (THYCA-QoL), and psychological distress (Hospital Anxiety and Depression Scale). The fatigue scores were compared with those of an age- and sex-matched normative population (n=530). Multiple logistic regression analyses were conducted to investigate the independent associations between clinical and demographic characteristics, TC-specific HRQoL, and psychological distress with fatigue., Results: Eighty-six percent (n=306) responded. TC survivors were more often classified as fatigued or very fatigued (short-term <5 years: 43%; long-term 5-10 years: 44%; long-term 10-15 years: 47%; long-term >15 years: 39%) compared to the normative population (25%; p<0.001). Anxiety (odds ratio (OR) 1.15, 95% confidence interval [CI] 1.03-1.28) and depression (OR 1.43 [CI 1.22-1.68]) were associated with fatigue, as was also the case for TC-specific neuromuscular (OR 1.03 [CI 1.01-1.06]), concentration (OR 1.03 [CI 1.01-1.06]), and psychological TC-specific HRQoL (OR 1.06 [CI 1.02-1.10])., Conclusion: Short- and long-term TC survivors report higher levels of fatigue than an age- and sex-matched normative population do. Both TC-specific HRQoL and psychological distress were associated with fatigue.

Objective: Increasing numbers of endometrial cancer survivors place a high burden on the health care system. This study describes the number of visits to the general practitioner, the medical specialist and other care services, compared with the general population, and factors associated with this health care use: age, marital status, education, body mass index, comorbidity, years since diagnosis, and radiotherapy., Methods: Survivors of stage I to stage II endometrial cancer diagnosed between 1999 and 2007 were selected from the Eindhoven Cancer Registry. Survivors (N = 742) completed a questionnaire about their demographic characteristics and health care use. Cancer-related information was retrieved from the Eindhoven Cancer Registry., Results: Endometrial cancer survivors visited their medical specialist more often (3.4 times per year) than the general population. In relation to their cancer, they visited their general practitioner once and their medical specialist twice per year. Use of additional care services was low (14%) but higher among younger survivors (33%). Younger women were more likely to make cancer-related visits to their general practitioner, whereas more highly educated women were less likely to visit their general practitioner and more likely to make cancer-related medical specialist visits. Women with more comorbid conditions were more likely to make general and cancer-related general practitioner visits. Radiotherapy and body mass index were not related to health care use., Conclusions: Endometrial cancer survivors use more health care than women in the general population. Younger women visit their general practitioner more often in relation to their cancer and use more additional care services. More highly educated survivors were more likely to visit a medical specialist in relation to their cancer.

Background: The goal of this large prospective population-based study was to examine the association between depressive symptoms and all-cause mortality among cancer survivors up to 10 years post-diagnosis., Methods: All currently alive individuals diagnosed with endometrial or colorectal cancer (CRC) between 1998 and 2007 or with lymphoma or multiple myeloma between 1999 and 2008, as registered in the Eindhoven Cancer Registry, received a questionnaire on depressive symptoms (Hospital Anxiety and Depression Scale (HADS)) in 2008 or 2009, respectively; 69 % (n = 3,080) responded. Survival status was obtained from the Central Bureau for Genealogy., Results: Clinically elevated levels of depressive symptoms (HADS cutoff value ≥8) were more prevalent in those who died compared to those who survived (38 vs. 19 %, respectively; p < 0.0001). This was also evident across different types of cancer. After adjustment for independent predictors of all-cause mortality, 1-10-year survivors with depressive symptoms had an increased risk of death (hazard ratio (HR) 2.07; 95 % confidence interval (CI) 1.56-2.74; p < 0.0001), and this was also found among 1-2-year survivors (HR, 2.20; 95 % CI, 1.41-3.43; p < 0.001). Sub-analyses among CRC survivors gave the opportunity to adjust for metastasis and showed that depressive symptoms among 1-10-year CRC survivors and 1-2-year CRC survivors increased the risk of death (HR, 1.88; 95 % CI, 1.24-2.83; p < 0.01 and HR, 2.55; 95 % CI, 1.44-4.51; p < 0.001, respectively)., Conclusions: This study showed that patients with depressive symptoms had twofold risk for all-cause mortality, even after adjustment for major clinical predictors., Implications for Cancer Survivors: Paying more attention to the recognition and treatment of depressive symptoms seems warranted since depressive symptoms are often underdiagnosed and undertreated in cancer patients.

Hodgkin Lymphoma (HL) survivors are at risk for adverse psychosocial events as a result from cancer diagnosis and treatment. Fatigue is one of the most frequently reported long-term symptoms and is often reported to interfere with daily life. We conducted a systematic review to determine prevalence, severity and predisposing factors of fatigue in HL survivors. A literature search was conducted up to August 2012. Twenty-two articles comparing HL survivors with norm population data met all predefined selection criteria. Prevalence rates, levels of fatigue and clinical relevance of the results were determined. Prevalence of fatigue ranged from 11-76 % in HL survivors compared to 10 % in the general population. Mean fatigue scores were 5-13 % higher compared to the normative population; these findings were clinically relevant in 7 out of 11 studies. Increasing age was associated with higher levels of fatigue in HL survivors. Treatment modality and stage of initial disease were not associated with higher fatigue levels, while comorbidities or other treatment sequelae seemed to impact on the levels of fatigue. HL survivors are at serious risk for developing clinically relevant, long-term fatigue. The impact of patient and treatment characteristics on risk of fatigue is limited. Focus for future research should shift to the role of late-treatment sequelae and psychological distress symptoms.

Objective: The health status and psychosocial well-being of multiple primary cancer (MPC) survivors are under-researched., Methods: In total, 3615 survivors identified from the Eindhoven Cancer Registry between 2008 and 2009 were assessed. About one in six survivors had survived MPC (n = 556). All survivors completed questionnaires on health status (SF-36/European Organization of Research and Treatment of Cancer quality of life module), mental health (Hospital Anxiety and Depression Scale) and impact of cancer (Impact of Cancer)., Results: Compared with single primary cancer survivors, MPC survivors reported significantly poorer scores on general health and higher symptom scores on diarrhoea and fatigue. Significantly more MPC survivors met the subclinical cut-off score of ≥ 8 points on the Hospital Anxiety and Depression Scale depression subscale (27% vs. 19%, p = 0.0001). MPC survivors also reported significantly greater negative impact of cancer (namely body changes and life interferences) and positive impact of health awareness on their lives. All results were adjusted for age at survey, time since last diagnosis, sex, comorbidity, body mass index and marital status. In secondary analyses, MPC survivors with different primary cancer combinations or time interval between primary cancer diagnoses had comparable health status and psychosocial well-being., Conclusion: Multiple primary cancer survivors reported a poorer health status and, in general, experienced a greater negative impact of cancer on their psychosocial well-being than single primary cancer survivors., (Copyright © 2012 John Wiley & Sons, Ltd.)

Purpose: To understand cultural differences in the impact of cancer (IOC) by (i) performing an independent psychometric evaluation of the Dutch version of the Impact of Cancer Scale version 2 (IOCv2) in a non-Hodgkin lymphoma (NHL) sample and (ii) examining differences between Dutch and American NHL survivors in perceived IOC and identifying associations with socio-demographic and clinical characteristics., Methods: Data collected from 491 Dutch and 738 American NHL survivors were used in this study. IOCv2 responses were obtained from all survivors; the Dutch survivors also completed the European Organization for Research and Treatment of Cancer Quality of Life Core questionnaire, which measures quality of life., Results: Exploratory factor analysis of the Dutch version yielded a factor solution similar to the American structure but with some subscales merging into single factors. Internal consistency was good; Cronbach's alpha was 0.88 for the Positive and 0.94 for the Negative summary scales. Large differences were observed between survivors, whereby Dutch survivors reported fewer Positive (Δ -0.4, p < 0.001, effect size: 0.27) and more Negative (Δ 0.2, p ≤ 0.001, effect size: 0.13) impacts of cancer independent of socio-demographic and clinical characteristics., Conclusion: Similar impact domains of the IOCv2 were observed in the Dutch sample, providing evidence that IOCv2 scales measure common and important survivor concerns across two different Western nations. Higher positive impacts for US survivors might be explained by more personal control and availability of supportive services. Future research should focus on determinants of the IOC in both Dutch and American survivors to gain better understanding of the factors that might improve it and suggest how health care may be modified toward that end., (Copyright © 2012 John Wiley & Sons, Ltd.)

Background: Few studies specifically focus on fatigue of (long-term) colorectal cancer (CRC) survivors or compare fatigue levels with a normative population. Association between surviving multiple primary cancers and fatigue is also explored., Methods: Survivors diagnosed from 1998 to 2009 were identified from the Eindhoven Cancer Registry. In total, 3739 (79%) respondents and an age- and gender-matched normative population (n=338) completed questionnaires on fatigue and psychological distress., Results: More survivors reported feeling fatigued than the normative population (39% versus 22%, p<0.0001). Short-term survivors (<5 years post-diagnosis) had the highest mean fatigue scores compared with long-term survivors (≥5 years post-diagnosis) or the normative population (21±7 versus 20±7 versus 18±5, p<0.0001, respectively). Having primary cancers prior to CRC was associated with more fatigue. Surgery+chemoradiation was independently associated with fatigue (odds ratio (OR): 1.63, 95% confidence interval (CI): 1.17-2.29, p=0.004) as were anxiety (OR: 1.16, 95% CI: 1.12-1.19, p<0.0001) and depressive symptoms (OR: 1.38, 95% CI: 1.33-1.43, p<0.0001)., Conclusions: Fatigue is a significant problem, especially for short-term CRC survivors. The association between chemoradiation and fatigue suggests that patients could benefit from better information on treatment side-effects. When treating fatigue, clinical care should also focus on survivors' psychological needs, especially survivors of multiple primary cancers., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Background: The aim of this study was to provide insight into the relationship between information provision and illness perceptions among cancer survivors., Methods: All individuals diagnosed with lymphoma, multiple myeloma, endometrial or colorectal cancer between 1998 and 2008, as registered in the Eindhoven Cancer Registry, were eligible for participation. In total, 4446 survivors received a questionnaire including the EORTC-QLQ-INFO25 and the Brief Illness Perception Questionnaire; 69% responded (n = 3080)., Results: Lymphoma and multiple myeloma patients were most satisfied with the information they received, and they perceived to having received more information about their treatment and other services (after care) compared with colorectal and endometrial cancer survivors (p < 0.05). Multiple myeloma patients reported the highest scores (conceptualized their illness as very serious) on the illness perception scales. The perceived receipt of more disease-specific information was associated with more personal and treatment control and a better understanding of the illness, whereas the perceived receipt of more information about other services was associated with more negative consequences of the illness on the patients' life, longer perceived duration of illness, less treatment control, more symptoms attributable to the illness, less understanding of, and stronger emotional reaction to the illness (p < 0.05). Satisfaction with the received information was associated with better illness perception on all subscales, except for personal control (p < 0.05)., Conclusion: Improving the patients' illness perceptions by tailoring the information provision to the needs of patients may help patients to get a more coherent understanding of their illness and will possibly lead to a better health-related quality of life., (Copyright © 2012 John Wiley & Sons, Ltd.)

The course of fatigue and quality of life in survivors of non-Hodgkin's lymphoma is unknown. The aims of this study were, therefore, to assess fatigue and quality of life in patients with non-Hodgkin's lymphoma following primary treatment, compare fatigue and quality of life in these patients with those of an age- and sex matched normative population to assess the severity of concerns and identify associations with fatigue of survivors who remained fatigued. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with non-Hodgkin's lymphoma from 1999-2009. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and the Fatigue Assessment Scale were completed once by 824 survivors of non-Hodgkin's lymphoma (80% response rate); 434 survivors completed these questionnaires again 1 year later. Survivors of non-Hodgkin's lymphoma reported more clinically relevant fatigue up till 10 years post-diagnosis compared to a normative population (P<0.001). Mean fatigue scores remained fairly stable over time (T1: x=28, SD=26; T2: x=30, SD=27, P=0.14): 22-28% of survivors reported deterioration, 19-23% reported improvement and 44-54% reported constant fatigue. Survivors who reported constant fatigue were more often diagnosed with stage IV disease and had more comorbid diseases. They were additionally more often female and divorced. Having comorbidities and being without a partner were also associated with constant fatigue in the normative population. In conclusion, six out of every ten responding non-Hodgkin's lymphoma survivors reported a high level of fatigue up till 10 years after diagnosis. Mean fatigue scores remained stable over time and survivors reporting constant fatigue more often had stage IV disease at diagnosis and comorbidities.

Background: Given the longevity of thyroid cancer patients, any impairment in health-related quality of life (HRQoL) during the follow-up period is of considerable concern. Therefore, the first aim of this study was to assess (thyroid cancer specific) HRQoL among long-term thyroid cancer survivors and to compare this with the HRQoL of an age- and sex-matched normative population. Secondly, our aim was to investigate which clinical and socio-demographic characteristics and thyroid cancer specific problems were associated with HRQoL., Material and Methods: All patients diagnosed with thyroid cancer between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a survey on HRQoL (EORTC QLQ-C30) and disease-specific symptoms (THYCA-QoL). The scores were compared with age- and sex-matched cancer free controls (n = 800). A series of multiple linear regression analyses were conducted to investigate the independent associations between clinical, socio-demographic and thyroid cancer specific factors with HRQoL., Results: A total of 306 patients (86%) responded to the invitation. Thyroid cancer survivors had significantly lower scores on physical, role, emotional, cognitive and social functioning (p < 0.001) compared to the normative population after adjusting for comorbidities. Sympathetic problems [feeling chilly (52%), hot flushes (40%)], neuromuscular problems [cramp legs (43%) and pain joints/muscles (64%)] and abrupt attacks of fatigue (50%) were the most often reported thyroid cancer specific complaints. Thyroid cancer specific neuromuscular, concentration, sympathetic and psychological problems explained 41-58% of the variance in HRQoL. Clinical and socio-demographic factors explained a small part of the variance in (thyroid cancer specific) HRQoL (1-27%)., Conclusion: Long-term thyroid cancer survivors experience more symptoms and deteriorated HRQoL compared to the normative population. Thyroid cancer specific neuromuscular, sympathetic, concentration and psychological symptoms are stronger associated with HRQoL than clinical and socio-demographic factors alone. Awareness of these specific determinants of HRQoL could help health care practitioners to provide better supportive care.

To improve posttreatment care for (long-term) lymphoma survivors in the Netherlands, survivorship clinics are being developed. As information provision is an important aspect of survivorship care, our aim was to evaluate the current perceived level of and satisfaction with information received by non-Hodgkin's lymphoma (NHL), Hodgkin's lymphoma (HL) and multiple myeloma (MM) survivors, and to identify associations with sociodemographic and clinical characteristics. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with NHL, HL and MM from 1999 to 2009. In total, 1,448 survivors received a questionnaire, and 1,135 of them responded (78.4 %). The EORTC QLQ-INFO25 was used to evaluate the perceived level of and satisfaction with information. Two thirds of survivors were satisfied with the amount of received information, with HL survivors being most satisfied (74 %). At least 25 % of survivors wanted more information. Young age, having had chemotherapy, having been diagnosed more recently, using internet for information and having no comorbidities were the most important factors associated with higher perceived levels of information provision. Although information provision and satisfaction with information seems relatively good in lymphoma and MM survivors, one third expressed unmet needs. Furthermore, variations between subgroups were observed. Good information provision is known to be associated with better quality of life. Survivorship care plans could be a way to achieve this.

Introduction: The goal of this large population-based study was to examine the socio-economic implications of cancer survivorship., Methods: Individuals alive and diagnosed with colorectal cancer and melanoma between 1998 and 2007 or Hodgkin lymphoma, non-Hodgkin lymphoma or multiple myeloma between 1999 and 2008 as registered in the Eindhoven Cancer Registry received a questionnaire on work changes and problems with obtaining a new (or extended) health care insurance, life insurance or a home loan; 70% (n = 2892) responded., Results: Results showed that 28% of all cancer patients experienced changes in their work situation after cancer. Most of them switched to part-time work or stopped working entirely. Patients (3.4%) who tried to obtain a different or upgrade their health care insurance experienced problems and in most cases, these were eventually resolved. Problems with life insurance were somewhat more common with 18% of those who tried to obtain a life insurance experiencing problems. The majority of these patients was rejected by the insurance company (61%) or was accepted at a higher premium (22%). Of the 21% who tried to obtain a home loan, 9% experienced problems. However, 22.2% got accepted eventually, 27.8% got accepted but at a higher mortgage payment and 22.2% got rejected but were eventually accepted by another bank., Conclusions: Almost a third of cancer survivors experienced changes in their work situation after cancer. Problems with obtaining health insurance, life insurance and home loans were also common., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objective: Cancer survivors often report comorbid diseases, but there are individual differences in risk. Type D personality is a general propensity to psychological distress that is related to poor cardiovascular outcomes. In this study, we examined whether type D was also related to comorbidity burden and health care utilization among cancer survivors., Methods: Individuals diagnosed with endometrial cancer or colorectal cancer between 1998 and 2007, or with lymphoma or multiple myeloma between 1999 and 2008 as registered in the Eindhoven Cancer Registry, received the Self-Administered Comorbidity Questionnaire, questions on health care utilization and the Type D personality scale; 69% (n=3080) responded., Results: Nineteen percent of survivors had a type D personality. Over a 12-month period, type D survivors significantly more often reported osteoarthritis, back pain, and depression than non-type D survivors. Also, type D survivors more often reported to feel bothered by high blood pressure, osteoarthritis, heart disease, depression, diabetes and lung disease during daily activities. Type D survivors more often visited their general practitioner than non-type D survivors (P<.001), also in relation to cancer (0 visits: 54% vs. 60%; 1-5: 28% vs. 22%; >5: 9% vs. 5%; P<.001), as well as their specialist (0 visits: 6% vs. 7%; 1-5 visits: 59% vs. 64%; >5 visits: 30% vs. 23%; P<.01)., Conclusion: Type D personality is a vulnerability factor that may help to identify subgroups of cancer survivors who are at an increased risk for comorbidity burden and increased health care utilization., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Purpose: The Pictorial Representation of Illness and Self Measure-Revised 2 (PRISM-R2) has been developed as generic measure to assess suffering. The aim of this study was to evaluate the ability of this instrument to identify long-term cancer survivors with high levels of suffering who may need additional support., Methods: 1299 cancer survivors completed the PRISM-R2, the Short Form Health Survey (SF-36), and the Quality of Life-Cancer Survivors questionnaire (QoL-CS). The PRISM-R2 distinguishes between the Self-Illness Separation (SIS) and Illness Perception Measure (IPM), both measuring aspects of suffering., Results: 112 (9%) cancer survivors reported high suffering according to IPM. This group had a higher cancer stage at diagnosis, more cancer recurrences, more comorbidities, and were lower educated compared to people reporting less suffering. The PRISM-R2 could explain substantial amounts of variance (10-14%) in the psychological aspects of the SF-36 and QoL-CS. The IPM also discriminated statistically and clinically significant between high- and low-health status., Conclusion: The PRISM-R2 proved to be able to discriminate between individuals with good and deteriorated levels of QoL. Further evaluation of its validity and screening potential is recommended.

Purpose: To date, few studies have evaluated the impact of preoperative radiotherapy (pRT) on long-term health status of rectal cancer survivors. Using a population-based sample, we assessed the impact of pRT on general and disease-specific health status of rectal cancer survivors up to 10 years post diagnosis. The health status of older (≥75 years old at diagnosis) pRT survivors was also compared with that of younger survivors., Methods and Materials: Survivors identified from the Eindhoven Cancer Registry treated with surgery only (SU) or with pRT between 1998 and 2007 were included. Survivors completed the Short Form-36 (SF-36) health survey questionnaire and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Colorectal 38 (EORTC QLQ-CR38) questionnaire. The SF-36 and EORTC QLQ-CR38 (sexuality subscale) scores of the survivors were compared to an age- and sex-matched Dutch normal population., Results: A total of 340 survivors (response, 85%; pRT survivors, 71%) were analyzed. Overall, survivors had similar general health status. Both short-term (<5 years) and long-term (≥5 years) pRT survivors had significantly poorer body image and more problems with gastrointestinal function, male sexual dysfunction, and defecation than SU survivors. Survivors had comparable general health status but greater sexual dysfunction than the normal population. Older pRT survivors had general and disease-specific health status comparable to that of younger pRT survivors., Conclusions: For better survivorship care, rectal cancer survivors could benefit from increased clinical and psychological focus on the possible long-term morbidity of treatment and its effects on health status., (Copyright © 2011 Elsevier Inc. All rights reserved.)

'Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)' is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. PROFILES contains a large web-based component and are linked directly to clinical data from the population-based Eindhoven cancer registry. This paper describes the rationale and design of PROFILES. The primary aims of studies that use the PROFILES registry are: (1) psychosocial risk and outcome assessment to identify patients at high risk for poor physical and mental health outcomes, (2) to analyse mediating mechanisms to better understand the biological and behavioural factors associated with cancer treatment outcomes, and (3) to evaluate physical and psychosocial care needs of cancer survivors. PROFILES is a tool that enables data collection management; from inviting patients to participation in studies, to collecting patient-reported outcomes data via web-based or mailed questionnaires and linking these data with clinical data. The availability of a control cohort of approximately 2000 persons from the general population who complete the same basic questionnaire annually will provide the opportunity to estimate the unique impact of cancer, beyond that of normal ageing and comorbidities. Raw data from the PROFILES registry will be available for non-commercial scientific research, subject to study question, privacy and confidentiality restrictions, and registration (www.profilesregistry.nl)., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Cancer survivors are at risk of experiencing adverse physical and psychosocial effects of their cancer and its treatment. Both Hodgkin's lymphoma (HL) and non-Hodgkin's lymphoma (NHL) survivors face problems that can affect their health-related quality of life (HRQoL). The authors systematically reviewed the literature on HRQoL among HL and NHL survivors. A PubMed and PsychINFO literature search for original articles published until May 2011 was performed. Twenty-four articles, which met the predefined inclusion criteria, were subjected to a quality checklist. HL survivors showed the most problems in (role) physical, social and cognitive functioning, general health, fatigue and financial problems. In addition, HL survivors treated with a combination of therapies, with older age and female sex reported worse HRQoL. NHL survivors showed the most problems in physical functioning, appetite loss, vitality and financial problems. Having had chemotherapy was negatively associated with HRQoL, but no differences in chemotherapy regimens were found. Furthermore, in NHL survivors not meeting public exercise guidelines, HRQoL is low but can be improved with more exercise. More research on the longitudinal comparison between HL and NHL survivors and healthy controls should be performed in order to better understand the long-term (side) effects of treatment on HRQoL and possibilities to alleviate these.

Background: This population-based study assessed the impact of chemotherapy on general and disease-specific health status of resected colon cancer survivors up to 10 years post-diagnosis., Patients and Methods: Colon cancer survivors diagnosed between 1998 and 2007 were selected from the Eindhoven Cancer Registry. Survivors completed the SF-36 and the EORTC colorectal module (EORTC-QLQ-CR38). Comparisons to a normative population were conducted. Multiple linear regression analyses investigated the association between treatment and health status., Results: Eight hundred and forty eight survivors were evaluated: 29% had chemotherapy (CT); 71% without chemotherapy (nCT). Survivors had similar SF-36 scores and scored better than the normative population on several domains. On the EORTC-QLQ-CR38, male nCT survivors had more sexual problems than CT survivors (p=0.01). Among the sexually active respondents, the survivors reported sex to be less enjoyable than the normative population (p=0.02). In multivariate analyses, CT predicted better physical function, and less male sexual dysfunction and weight loss problems than nCT., Conclusions: Overall, CT survivors have general health status scores comparable to nCT survivors and the normative population up to 10 years since initial diagnosis. Sex-related problems among survivors suggest more attention on this often sensitive issue is required in clinical management., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objective: To explore whether socioeconomic status (SES) was associated with health-related quality of life (HRQL) and health care use among long-term prostate cancer survivors., Patients and Methods: Through urologists in the Comprehensive Cancer Center South, all 5- to 10-year prostate cancer survivors known in the Eindhoven Cancer Registry without disease progression were invited to complete the 36-item Short Form Health Survey (SF-36), the Expanded Prostate Cancer Index, and the Dutch sexual activities module. Multivariate linear regression assessed the effect of SES (based on home value and household income) on HRQL and health care use., Results: Five-hundred eighty-four patients (response rate 81%) were included. Survivors with a low SES exhibited lower mental SF-36 scores (6-16 points on a 0-100 scale), independent of sociodemographic and clinical characteristics (P < .05), and hardly any differences in physical SF-36 subscales, sexual function, and urinary and bowel function and bother. Presence of serious comorbidity had a stronger predictive value for HRQL than SES. Health care use did not seem to be associated with SES., Conclusions: Prostate cancer survivors with a low SES exhibited a worse mental but not physical HRQL than those with a higher SES. Long-term health outcomes of patients with low SES may be maximized by paying extra attention to comorbid conditions., (Copyright © 2010 Elsevier Inc. All rights reserved.)

Objective: We aimed to investigate the prevalence of Type D personality (the conjoint effects of negative affectivity and social inhibition) among melanoma survivors and to obtain insight into its effects on health status, impact of cancer and health care utilisation., Methods: We selected all patients diagnosed with melanoma between 1998 and 2007 from three large regional hospitals in the Netherlands. In total, 699 survivors, alive in January 2008, received a questionnaire including Type D personality scale (DS14), impact of cancer questionnaire (IOC) and SF-36 and 80% responded (n=562)., Results: Twenty-two percent of survivors (n=125) were classified as Type D. They reported a clinically and statistically significant worse general health (57.8 versus 75.6), social functioning (73.1 versus 88.7), mental health (61.7 versus 80.6), more emotional role limitations (67.8 versus 89.4) and less vitality (54.5 versus 72.8) than non-Type D patients. Additionally, they reported a statistically and clinically relevant higher impact of cancer on body changes, negative self-evaluation, negative outlook on life, life interferences and health worry. Furthermore, they were more worried about the influence of the sun on their skin and acted accordingly. No differences were found in health care utilisation., Conclusions: Type D personality has a distinct negative impact on health status in melanoma survivors and is an important factor to screen for in clinical practice. Giving special attention to these patients is important while they are more likely to experience a strong impact of cancer which cannot be explained by socio-demographical or clinical characteristics., (Copyright (c) 2009 Elsevier Ltd. All rights reserved.)

Background: Although cancer survivorship is increasing with improved diagnosis and treatments, few studies have explored employment changes and the factors related to this change among cancer survivors. Therefore, we aim to explore the prevalence of employment problems in long-term cancer survivors. In addition, we explored what patient or tumour characteristics predicted employment changes., Methods: All 1893 long-term survivors of prostate cancer, endometrial cancer, non-Hodgkin's lymphoma, and Hodgkin's lymphoma diagnosed between 1989 and 1998 in the area of the Comprehensive Cancer Centre South, The Netherlands were included in a population-based cross-sectional survey., Results: Response rate was 80% (n=1511). After excluding survivors without a job before diagnosis, 403 survivors remained; 197 (49%) experienced no changes in their work situation following cancer diagnosis, 69 (17%) were working fewer hours, and 137 (34%) stopped working or retired. A medium educational level was significant in reducing the risk of work changes. Being older, having more than one comorbid condition, being treated with chemotherapy, and disease progression were significant independent predictors of work changes after cancer. Experiencing work changes was associated with lower physical functioning but positively associated with social well-being., Discussion: Long-term cancer survivors experience work changes after diagnosis and treatment, and clinical factors significantly predicted work change after cancer. As such, our study underscores the importance of rehabilitation programs in improving the return to work after cancer.

Introduction: The number of cancer survivors experiencing disease progression (DP) is increasing with the number of cancer survivors. However, little is known whether DP affects health-related quality of life (HRQL) of long-term cancer survivors. We aimed therefore to compare the health status (HS) and HRQL of DP and disease-free (DF) survivors up to 15 years after initial diagnosis., Methods: 232 cancer survivors with DP identified through the Eindhoven Cancer Registry were matched with 232 DF survivors of similar demographic and clinical characteristics. Patients completed generic HS (SF-36) and cancer-specific HRQL (QOL-CS) questionnaires 5-15 years after diagnosis., Results: Compared with DF survivors, DP survivors exhibited significantly lower scores on all SF-36 and QOL-CS (except spiritual well-being) dimensions. DF survivors had better scores than the normative population on all SF-36 dimensions. Among survivors with DP, those with short survival (<5 years) had significantly poorer HS scores on all dimensions except bodily pain compared with the normative population. Comparatively, the long survival (>or=5 years) DP group had better HRQL than the short DP group but poorer HRQL than the normative population. In multivariate analyses, DP and DF survival time were independently associated with aspects of HS and HRQL in cancer survivors., Discussions/conclusions: DP cancer survivors have poorer long-term HS and HRQL compared with DF survivors. However, there is suggestion that HS and HRQL does improve over time following DP., Implication for Cancer Survivors: Although DP survivors report poorer long-term HRQL compared with DF cancer survivors, results suggest that time can attenuate the distress of DP on HRQL. Psycho-educational programs could help to increase patients' sense of empowerment and personal control should DP occur.

This study evaluates posttraumatic growth, benefit finding and well-being, and their mutual association in a random sample of disease-free 10-year breast cancer survivors. The population-based Eindhoven Cancer Registry (ECR) was used to select all women diagnosed with breast cancer in 1993 in six hospitals. Of the 254 breast cancer survivors, 183 (72%) returned a completed questionnaire. Measures included the Posttraumatic Growth Inventory (posttraumatic growth), the Perceived Disease Impact Scale (benefit finding) and the CentERdata Health monitor (life satisfaction, health status and psychological well-being). Self-reported health status and psychological well-being were similar in survivors compared to general population norms, whereas life satisfaction was significantly higher among survivors. In addition, posttraumatic growth was seen in the following domains: relationships with others, personal strength and appreciation of life. The number of patients reporting benefit finding was high (79%, N = 145). Benefit finding showed a moderately positive correlation with posttraumatic growth. In addition, women who stated that their satisfaction with life was high reported higher levels of posttraumatic growth in comparison to women who did not. Radiotherapy was negatively associated with posttraumatic growth. Women with a higher tumour stage at diagnosis experienced less benefit finding in comparison to women with a lower tumour stage at diagnosis. The above results can help to identify those patients who will probably experience posttraumatic growth and benefit finding after cancer. However, it is important to be aware that the positive effects of cancer on a patient's life do not occur in all cancer patients and all phases of the disease trajectory.

Purpose: To obtain insight into the long-term (5- to 10-year) effects of prostate cancer and treatment on bowel, urinary, and sexual function, we performed a population-based study. Prostate-specific function was compared with an age-matched normative population without prostate cancer., Methods and Materials: Through the population-based Eindhoven Cancer Registry, we selected all men diagnosed with prostate cancer between 1994 and 1998 in the southern Netherlands. In total, 964 patients, alive in November 2004, received questionnaire; 780 (81%) responded., Results: Urinary problems were most common after a prostatectomy; bowel problems were most common after radiotherapy. Compared with an age-matched normative population both urinary and bowel functioning and bother were significantly worse among survivors. Urinary incontinence was reported by 23-48% of survivors compared with 4% of the normative population. Bowel leakage occurred in 5-14% of patients compared with 2% of norms. Erection problems occurred in 40-74% of patients compared with 18% of norms., Conclusions: These results form an important contribution to the limited information available on prostate-specific problems in the growing group of long-term prostate cancer survivors. Bowel, urinary, and sexual problems occur more often among long-term survivors compared with a reference group and cannot be explained merely by age. Because these problems persist for many years, urologists should provide patients with adequate information before treatment. After treatment, there should be an appropriate focus on these problems.

Objective: To assess the health-related quality of life (HRQoL) of long-term, disease-free prostate cancer survivors and compare it with that of prostate cancer survivors with diabetes mellitus (DM), and a Dutch normative population, as comorbidity can have a major impact on HRQoL in cancer survivors., Patients and Methods: The Eindhoven Cancer Registry was used to select all men diagnosed with prostate cancer from 1994 to 1998. Questionnaires on HRQoL (Short Form 36) and prostate specific problems (University of California, Los Angeles Expanded Prostate Cancer Index) were sent to 964 patients, and 780 (81%) responded. Excluding patients with disease progression, the sample comprised 525 with prostate cancer and 65 with both prostate cancer and DM. Survivors with DM were more likely to have other comorbid conditions at the time of survey besides DM than were those without DM (74% vs 60%, P = 0.05). At 5-10 years after diagnosis, patients with DM reported worse General Health Perceptions than patients without DM or the normative population (means 52, 61 and 63; P < 0.001). Patients with DM also reported worse Vitality scores (59 vs 63; P < 0.001) than the normative population. Regression analysis indicated that DM was negatively associated with General Health Perceptions (beta = -0.13; P < 0.01) and Vitality (beta = -0.12; P < 0.01). Survivors with DM did not report worse urinary and bowel function or bother, nor more sexual problems than those without DM., Conclusions: Except for general health perceptions and vitality, the HRQoL of prostate cancer survivors with or without DM was comparable to a normative population. Survivorship selection can possibly explain, in part, why patients with DM did not report worse generic or disease-specific HRQoL than those without DM, as had been expected.

Objective: The objective of this study was to evaluate the extent of internet access and use and patient characteristics associated with internet use. We also aimed to study when and at which sites cancer patients search for information, the self-reported effect on health care use, and patients' wishes with respect to future internet possibilities., Materials and Methods: We drew a sample of 390 patients diagnosed with breast (n = 128), prostate (n = 96), or gynecological (n = 89) cancer or lymphoma (n = 77) in four different hospitals in the period 2002-2004, who were 65 years or younger at diagnosis. These patients were sent a questionnaire that contained 45 questions about demographics and three broad applications of internet use: content, communication, community., Results: Of the 261 (75%) patients who responded, 60% used Internet by themselves, 9% via others, whereas 31% did not use the Internet. High education, young age, and high socio-economic status were all independently positively associated with internet use. Of the patients with complaints but pre-diagnosis, 41% searched the Internet for information about cancer daily to several times a week. After diagnosis, during treatment, and at follow-up, this was, respectively, 71%, 56%, and 4%. Although patients preferred to get reliable information from the Web site of their oncologist (88%), hospital (70%) or Dutch Cancer Society (76%), Web sites that are completely financed and created by pharmaceutical industries were mentioned most as source of information. Patients who used the Internet to find information about cancer felt themselves to be better informed about their disease (72%); only 3% thought that consulting the Internet increased the frequency of visiting their doctor, whereas 20% felt that information from the Internet influenced the treatment decision made by their doctor. Most patients who use the Internet would like to be able to access their own medical file (79%) or test results (81%) if possible., Conclusion: Many cancer patients use the Internet to find reliable information about their disease and treatment. Patient information centers from hospitals should be strongly encouraged to improve disease and treatment information facilities on their hospital Web site, especially since most patients view their oncologist still as the most important source of information.

Background: The consequences of cancer and its treatment on health-related quality of life (HRQL) and health care utilisation among elderly long-term cancer survivors have rarely been studied. However, the impact can be different for older compared to younger patients due to the higher prevalence of comorbid diseases, a higher risk of treatment-related complications and because they often receive different therapies compared to younger patients. Therefore, this study addressed the following questions; do HRQL and health care utilisation differ between younger and elderly cancer survivors, and are those differences age or disease related., Methods: A population-based, cross-sectional survey among 1893 long-term survivors of endometrial cancer, prostate cancer and non-Hodgkin's lymphoma was conducted using a cancer registry. HRQL was measured by the SF-36 and health care utilisation was measured with a self-reported questionnaire. Results were compared to a normative population. Patients with disease progression were excluded resulting in a total number of 1112 patients to be analysed., Results: Young non-Hodgkin lymphoma survivors (<70 years) reported lower vitality, bodily pain and general health compared to the normative population while older (70 years) survivors did not differ from the norm. Young lymphoma survivors experienced better physical functioning compared to older survivors. Young endometrial cancer survivors experienced less bodily pain compared to the normative population while older survivors did not differ from the norm. Young endometrial cancer survivors experienced better physical and role functioning compared to older survivors. Young prostate cancer survivors reported less bodily pain compared to the norm while older survivors did not. Young prostate cancer survivors reported higher scores on physical functioning compared to older survivors. Age, comorbid diseases, educational level and current occupation influenced HRQL significantly. Both younger and older cancer survivors visited their medical specialist, but not their GP, significantly more often compared to the age-matched general Dutch population. Both younger and older cancer survivors only sporadically used additional care services after cancer treatment., Discussion: HRQL of older and younger survivors is comparable, with the exception of physical functioning which is lower in older survivors. This difference in physical functioning was probably not caused by cancer because physical functioning among cancer survivors did not differ much compared to an age-matched normative population. Both younger and older long-term cancer survivors visited their medical specialist often but only sporadically used additional care services after cancer treatment.

In the present study, self-reported health care utilization of cancer survivors is compared with those of an age- and gender-matched normative population and predictors of health care utilization are identified. A population-based, cross-sectional survey among 1893 long-term survivors of endometrial and prostate cancer and malignant lymphomas (Hodgkin's and non-Hodgkin's) diagnosed between 1989 and 1998 was conducted using the cancer registry of the Comprehensive Cancer Centre South. Cancer survivors visited their general practitioner somewhat more often compared to the age and gender-matched general Dutch population but this effect was not always statistically significant. In addition, they visited their medical specialist significantly more often. Survivors only sporadically (0-3%) visited or required a dietician, sexologist, oncology nurse, pastor, creative therapy or recovery program. Contact with a psychologist, physiotherapist and other cancer survivors took place somewhat more often. Patients visited a medical specialist less often if they were diagnosed with endometrial cancer (OR = 0.2; 95% CI = 0.1-0.5), if they were diagnosed between 10-15 years ago (OR = 0.6; 95% CI = 0.1-0.5) and if they were not married or divorced (OR = 0.5; 95% CI = 0.3-0.9). Contact with a psychologist was related to having a university or college degree (OR = 3.6; 95% CI = 1.3-9.4). Cancer survivors visited their specialist more often compared to the normative population. Changes in health care, such as less administrative work for the specialist and more efficiency, are probably necessary in order to cope adequately with the increasing demand on the system.

Background: The objective of this population-based study was to document the long-term effects (5-15 years postdiagnosis) of non-Hodgkin lymphoma and its treatment on health-related quality of life (HRQL) and social problems., Methods: The population-based Eindhoven Cancer Registry was used to select all patients who were diagnosed with non-Hodgkin lymphoma from 1989 to 1998. Three hundred sixty patients were invited to complete the 36-item Short Form Health Survey (SF-36) and the Quality of Life-Cancer Survivors questionnaire, and 294 patients (82%) responded., Results: Patients who had received chemotherapy reported significantly worse psychological and social well-being and health-related quality of life (HRQL) than patients who had not received chemotherapy. Radiotherapy and watchful waiting were not associated significantly with HRQL outcomes. Patients who were diagnosed from 10 to 15 years earlier reported better social well-being than patients who were diagnosed from 5 to 9 years earlier. Compared with an age-matched, normative sample from the general population, patients reported significantly worse general health and less vitality, but they reported less bodily pain. Practical problems were reported with work (41%), obtaining health care insurance (6%) and life insurance (15%), and obtaining a home mortgage (22%)., Conclusions: From 5 to 15 years after diagnosis, the general health perceptions and vitality levels of non-Hodgkin lymphoma survivors remained significantly lower than those of their peers in the of general population. In addition, survivors faced practical problems with work and finances that deserve additional attention during the period of rehabilitation.