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    <title>Mols, F.</title>
    <link>http://repub.eur.nl/res/aut/15504/</link>
    <description>List of Publications</description>
    <language>en</language>
    <image>
      <url>http://repub.eur.nl/static-eur/img/logo.png</url>
      <title>RePub, Erasmus University Rotterdam</title>
      <link>http://repub.eur.nl</link>
    </image>
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      <title>Quantifying fatigue in (long-term) colorectal cancer survivors: A study from the population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry (Article)</title>
      <link>http://repub.eur.nl/res/pub/40093/</link>
      <pubDate>2013-05-01T00:00:00Z</pubDate>
      <description>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 &lt; 0.0001). Short-term survivors (&lt;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 &lt; 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 &lt; 0.0001) and depressive symptoms (OR: 1.38, 95% CI: 1.33-1.43, p &lt; 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. </description>
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      <title>Health-related quality of life and disease specific symptoms in long-term thyroid cancer survivors: A study from the population-based PROFILES registry (Article)</title>
      <link>http://repub.eur.nl/res/pub/38905/</link>
      <pubDate>2013-02-01T00:00:00Z</pubDate>
      <description>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 &lt; 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. </description>
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      <title>Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: Results from a population-based study using the PROFILES registry (Article)</title>
      <link>http://repub.eur.nl/res/pub/37369/</link>
      <pubDate>2012-10-01T00:00:00Z</pubDate>
      <description>Background: This prospective population-based study describes health-related quality of life (HRQOL) and disease-specific complaints of patients with multiple myeloma (MM) up to 10 yr post-diagnosis. Methods: The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to 2010. Patients with MM completed the EORTC QLQ-C30 and EORTC QLQ-MY20 questionnaires at baseline (n = 156; 74% response rate) and 1 yr later (n = 80). The EORTC QLQ-C30 was also completed by an age- and sex-matched normative population (n = 500). Results: Patients with MM reported statistically significant and clinically relevant worse scores on all EORTC QLQ-C30 scales (all P's at least &lt; 0.01) compared to the norm. Also, patients with MM reported a mean decrease (e.g., worsening) between baseline and 1-yr follow-up scores for: quality of life (mean, 68 vs. 55, respectively, P &lt; 0.001; 74% of patients had a deteriorated score), fatigue (33 vs. 39, P &lt; 0.05; 50%), nausea and vomiting (6.3 vs. 13, P &lt; 0.05; 71%), pain (33 vs. 43, P &lt; 0.05; 59%), and dyspnea (17 vs. 33, P &lt; 0.001; 66%). The most bothering symptoms during the past week were tingling hands/feet (32%), back pain (28%), bone aches/pain (26%), pain in arm/shoulder (19%), and feeling drowsy (18%). Also, 37% worried about their future health, 34% thought about their disease, and 21% worried about dying. Conclusion: Patients with MM experience a very high symptom burden and low HRQOL. Future studies should focus on possible mechanisms that can predict low HRQOL and high symptom burden in patients with MM and should investigate optimal ways to alleviate these. </description>
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      <title>Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: Results from a population-based study using the PROFILES registry (Article)</title>
      <link>http://repub.eur.nl/res/pub/37628/</link>
      <pubDate>2012-10-01T00:00:00Z</pubDate>
      <description>Background: This prospective population-based study describes health-related quality of life (HRQOL) and disease-specific complaints of patients with multiple myeloma (MM) up to 10 yr post-diagnosis. Methods: The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to 2010. Patients with MM completed the EORTC QLQ-C30 and EORTC QLQ-MY20 questionnaires at baseline (n = 156; 74% response rate) and 1 yr later (n = 80). The EORTC QLQ-C30 was also completed by an age- and sex-matched normative population (n = 500). Results: Patients with MM reported statistically significant and clinically relevant worse scores on all EORTC QLQ-C30 scales (all P's at least &lt; 0.01) compared to the norm. Also, patients with MM reported a mean decrease (e.g., worsening) between baseline and 1-yr follow-up scores for: quality of life (mean, 68 vs. 55, respectively, P &lt; 0.001; 74% of patients had a deteriorated score), fatigue (33 vs. 39, P &lt; 0.05; 50%), nausea and vomiting (6.3 vs. 13, P &lt; 0.05; 71%), pain (33 vs. 43, P &lt; 0.05; 59%), and dyspnea (17 vs. 33, P &lt; 0.001; 66%). The most bothering symptoms during the past week were tingling hands/feet (32%), back pain (28%), bone aches/pain (26%), pain in arm/shoulder (19%), and feeling drowsy (18%). Also, 37% worried about their future health, 34% thought about their disease, and 21% worried about dying. Conclusion: Patients with MM experience a very high symptom burden and low HRQOL. Future studies should focus on possible mechanisms that can predict low HRQOL and high symptom burden in patients with MM and should investigate optimal ways to alleviate these. </description>
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      <title>Socio-economic implications of cancer survivorship: Results from the PROFILES registry (Article)</title>
      <link>http://repub.eur.nl/res/pub/33978/</link>
      <pubDate>2011-12-21T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: Scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts (Article)</title>
      <link>http://repub.eur.nl/res/pub/34019/</link>
      <pubDate>2011-09-01T00:00:00Z</pubDate>
      <description>'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). </description>
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      <title>Impact of chemotherapy on health status and symptom burden of colon cancer survivors: A population-based study (Article)</title>
      <link>http://repub.eur.nl/res/pub/25592/</link>
      <pubDate>2011-03-30T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>Impact of Preoperative Radiotherapy on General and Disease-Specific Health Status of Rectal Cancer Survivors: A Population-Based Study (Article)</title>
      <link>http://repub.eur.nl/res/pub/23821/</link>
      <pubDate>2011-03-01T00:00:00Z</pubDate>
      <description>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 postdiagnosis. 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 (&lt;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.</description>
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      <title>Long-term prostate cancer survivors with low socioeconomic status reported worse mental healthrelated quality of life in a population-based study (Article)</title>
      <link>http://repub.eur.nl/res/pub/27274/</link>
      <pubDate>2010-11-01T00:00:00Z</pubDate>
      <description>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 (616 points on a 0100 scale), independent of sociodemographic and clinical characteristics (P &lt;.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. </description>
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      <title>Melanoma survivors are dissatisfied with perceived information about their diagnosis, treatment and follow-up care (Article)</title>
      <link>http://repub.eur.nl/res/pub/27573/</link>
      <pubDate>2010-10-01T00:00:00Z</pubDate>
      <description></description>
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      <title>Prostate cancer survivors who would be eligible for active surveillance but were either treated with radiotherapy or managed expectantly: Comparisons on long-term quality of life and symptom burden (Article)</title>
      <link>http://repub.eur.nl/res/pub/19917/</link>
      <pubDate>2010-03-01T00:00:00Z</pubDate>
      <description>OBJECTIVE To assess and identify factors associated with the long-term health-related quality of life (HRQL) of prostate cancer survivors managed expectantly, as patients with low-risk prostate cancer can be managed with active surveillance (AS), but research on associated long-term HRQL is scarce. PATIENTS AND METHODS From the population-based Eindhoven Cancer Registry, 71 men managed with AS were matched with 71 survivors who had similar demographic and clinical characteristics but treated with external beam radiotherapy (RT). All were diagnosed between 1994 and 1998. HRQL data were collected 5-10 years after diagnosis. Patients completed generic- (Short Form-36) and cancer-specific (Quality of Life - Cancer Survivors) HRQL instruments, and symptom burden (Expanded Prostate Cancer Index, Sexual Activity) questionnaires. RESULTS Patients on AS were comparable to those treated with RT for most generic- and disease-specific HRQL dimensions. Patients treated with RT had poorer mean (sd) bowel function scores, of 87.1 (13.1) vs 92.8 (10.7) (P &lt; 0.001), more bother with bowel function, at 85.0 (16.4) vs 93.7 (10.1) (P &lt; 0.001), and more problems with getting an erection (68% vs 47%, P = 0.005). Multivariate regression analyses (corrected for comorbidity and clinical disease progression) indicated that the management strategy independently predicted differences in physical functioning, bodily pain, spiritual and total well-being, and bowel function and bowel bother. CONCLUSIONS Patients managed expectantly at initial diagnosis (AS) have comparable HRQL and a lower symptom burden than patients treated with RT up to 10 years after the diagnosis.</description>
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      <title>Personality is associated with health status and impact of cancer among melanoma survivors (Article)</title>
      <link>http://repub.eur.nl/res/pub/28138/</link>
      <pubDate>2010-02-01T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>Health-related quality of life in cervical cancer survivors: a population-based survey (Article)</title>
      <link>http://repub.eur.nl/res/pub/16336/</link>
      <pubDate>2009-07-30T00:00:00Z</pubDate>
      <description>PURPOSE: In a population-based sample of cervical cancer survivors, health-related quality of life (HRQoL) was assessed 2-10 years postdiagnosis. METHODS AND MATERIALS: All patients given a diagnosis of cervical cancer in 1995-2003 in the Eindhoven region, The Netherlands, and alive after Jan 2006 were identified through the cancer registry. Generic HRQoL (36-Item Short-Form Health Survey, EQ-5D), cervical cancer-specific HRQoL (European Organization for Research and Treatment of Cancer Quality-of-Life questionnaire cervical cancer module), and anxiety (6-item State Trait Anxiety Inventory) were assessed and compared with a reference population (n = 349). Data for tumor characteristics at diagnosis and disease progression were available. RESULTS: A total of 291 women responded (69%), with a mean age of 53 +/- 13 (SD) years (range, 31-88 years). Treatment had consisted of surgery (n = 195) or a combination of therapies (n = 75); one woman had not been treated. Of all women, 85% were clinically disease free, 2% had a recurrence/metastasis, and in 13%, this was unknown. After controlling for background characteristics (age, education, job and marital status, having children, and country of birth), generic HRQoL scale scores were similar to the reference population, except for worse mental health in survivors. The most frequent symptoms were crampy pain in the abdomen or belly (17%), urinary leakage (15%), menopausal symptoms (18%), and problems with sexual activity. Compared with the 6-10-year survivors, more sexual worry and worse body image were reported by the 2-5-year survivors. Compared with surgery only, especially primary radiotherapy was associated with an increased frequency of treatment-related side effects, also after controlling for age and disease stage at diagnosis and follow-up. CONCLUSIONS: Most cervical cancer survivors were coping well, although their mental health was worse than in the reference population. Even after 2-10 years, radiotherapy was associated with an increased frequency of treatment-related side effects.</description>
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      <title>The impact of disease progression on perceived health status and quality of life of long-term cancer survivors (Article)</title>
      <link>http://repub.eur.nl/res/pub/24237/</link>
      <pubDate>2009-06-26T00:00:00Z</pubDate>
      <description>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 (&lt;5 years) had significantly poorer HS scores on all dimensions except bodily pain compared with the normative population. Comparatively, the long survival (≥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. </description>
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      <title>Well-being, posttraumatic growth and benefit finding in long-term breast cancer survivors (Article)</title>
      <link>http://repub.eur.nl/res/pub/25197/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>Health-Related Quality of Life in Cervical Cancer Survivors: A Population-Based Survey (Article)</title>
      <link>http://repub.eur.nl/res/pub/13625/</link>
      <pubDate>2009-04-01T00:00:00Z</pubDate>
      <description>PURPOSE: In a population-based sample of cervical cancer survivors, health-related quality of life (HRQoL) was assessed 2-10 years postdiagnosis. METHODS AND MATERIALS: All patients given a diagnosis of cervical cancer in 1995-2003 in the Eindhoven region, The Netherlands, and alive after Jan 2006 were identified through the cancer registry. Generic HRQoL (36-Item Short-Form Health Survey, EQ-5D), cervical cancer-specific HRQoL (European Organization for Research and Treatment of Cancer Quality-of-Life questionnaire cervical cancer module), and anxiety (6-item State Trait Anxiety Inventory) were assessed and compared with a reference population (n = 349). Data for tumor characteristics at diagnosis and disease progression were available. RESULTS: A total of 291 women responded (69%), with a mean age of 53 +/- 13 (SD) years (range, 31-88 years). Treatment had consisted of surgery (n = 195) or a combination of therapies (n = 75); one woman had not been treated. Of all women, 85% were clinically disease free, 2% had a recurrence/metastasis, and in 13%, this was unknown. After controlling for background characteristics (age, education, job and marital status, having children, and country of birth), generic HRQoL scale scores were similar to the reference population, except for worse mental health in survivors. The most frequent symptoms were crampy pain in the abdomen or belly (17%), urinary leakage (15%), menopausal symptoms (18%), and problems with sexual activity. Compared with the 6-10-year survivors, more sexual worry and worse body image were reported by the 2-5-year survivors. Compared with surgery only, especially primary radiotherapy was associated with an increased frequency of treatment-related side effects, also after controlling for age and disease stage at diagnosis and follow-up. CONCLUSIONS: Most cervical cancer survivors were coping well, although their mental health was worse than in the reference population. Even after 2-10 years, radiotherapy was associated with an increased frequency of treatment-related side effects.</description>
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      <title>Bowel, Urinary, and Sexual Problems Among Long-Term Prostate Cancer Survivors: A Population-Based Study (Article)</title>
      <link>http://repub.eur.nl/res/pub/25045/</link>
      <pubDate>2009-01-01T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>Does diabetes mellitus as a comorbid condition affect the health-related quality of life in prostate cancer survivors? Results of a population-based observational study (Article)</title>
      <link>http://repub.eur.nl/res/pub/14172/</link>
      <pubDate>2008-12-01T00:00:00Z</pubDate>
      <description>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 &lt; 0.001). Patients with DM also reported worse Vitality scores (59 vs 63; P &lt; 0.001) than the normative population. Regression analysis indicated that DM was negatively associated with General Health Perceptions (β = -0.13; P &lt; 0.01) and Vitality (β = -0.12; P &lt; 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.</description>
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      <title>Women show mixed intentions regarding the uptake of HPV vaccinations in pre-adolescents: a questionnaire study. (Article)</title>
      <link>http://repub.eur.nl/res/pub/17200/</link>
      <pubDate>2008-06-11T00:00:00Z</pubDate>
      <description>BACKGROUND: The general introduction of HPV vaccination, as the primary prevention of cervical cancer, is the subject of debate in the Netherlands. METHODS: We explored intentions towards HPV vaccinations for pre-adolescents in 1367 women; screen invitees, women with abnormal smears, cervical cancer survivors, and a reference group. RESULTS: 76% (screen invitees) to 81% (women with abnormal smears) said 'yes' to vaccinations, often motivated by 'prevention is better than cure'. Multivariate logistic regression showed that younger women were more positive than older women. Intentions were not related to education, job, marital status or having children. Both women who were pro and anti-HPV vaccinations expressed concerns about long-term effectiveness and side effects. Comments such as 'cervical cancer runs in the family' demonstrated confused knowledge. CONCLUSIONS: Most respondents had a positive intention towards HPV vaccinations, but intention was lower than actual childhood vaccination uptake in the current National Immunisation Programme (95%). Uncertainties about long-term effectiveness and side effects were the major causes of doubt.</description>
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      <title>Health-related quality of life and health care utilisation among older long-term cancer survivors: A population-based study (Article)</title>
      <link>http://repub.eur.nl/res/pub/36380/</link>
      <pubDate>2007-10-01T00:00:00Z</pubDate>
      <description>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 (&lt;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. </description>
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      <title>Impact of External Beam Adjuvant Radiotherapy on Health-Related Quality of Life for Long-Term Survivors of Endometrial Adenocarcinoma: A Population-Based Study (Article)</title>
      <link>http://repub.eur.nl/res/pub/36027/</link>
      <pubDate>2007-09-01T00:00:00Z</pubDate>
      <description>Purpose: To compare the health-related quality of life (HRQOL) among 5-10-year survivors of Stage I-II endometrial (adeno-)carcinoma (EC) treated with surgery alone or surgery with external beam adjuvant radiotherapy (EBRT) and an age-matched norm population. Methods and Materials: A population-based, cross-sectional survey was conducted by the Eindhoven Cancer Registry. All patients were included who had been diagnosed with EC between 1994 and 1998 (n = 462). Information from the questionnaires returned was linked to data from the Eindhoven Cancer Registry on patient, tumor, and treatment characteristics. Results: Responses were received from 75% of the patients. The analyses were restricted to women with Stage I-II disease at diagnosis, treated with either surgery alone or surgery with adjuvant EBRT, and without recurrent disease or new primary malignancies (n = 264). The patients who had received adjuvant EBRT (n = 80) had had a significantly higher tumor stage and grade at diagnosis (p &lt; 0.0001) and a longer mean time since diagnosis (p = 0.04). Age, number of comorbid diseases, current marital status, nulliparity, education, and occupation were similar for both treatment groups. On multivariate analyses, adjuvant EBRT was independently and negatively associated with the vitality and physical and social well-being scale scores. The HRQOL scores of both treatment groups, however, were similar to those of an age-matched norm population. Conclusion: In general, the HRQOL of EC survivors is good. EC survivors treated with surgery alone had a better HRQOL than women treated with surgery and adjuvant EBRT, although for both groups, the HRQOL was in the range of the norm population. </description>
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      <title>Increased health care utilization among long-term cancer survivors compared to the average Dutch population: A population-based study (Article)</title>
      <link>http://repub.eur.nl/res/pub/35253/</link>
      <pubDate>2007-08-15T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>Quality of life among long-term non-hodgkin lymphoma survivors: A population-based study (Article)</title>
      <link>http://repub.eur.nl/res/pub/35472/</link>
      <pubDate>2007-04-15T00:00:00Z</pubDate>
      <description>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 significandy 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. </description>
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