To examine the association between Type D personality and illness perceptions among colorectal ca... more To examine the association between Type D personality and illness perceptions among colorectal cancer survivors 1-10years post-diagnosis. Data from two population-based surveys on colorectal cancer survivors was used. Patients diagnosed between 1998 and 2009, as registered in the Eindhoven Cancer Registry, received a questionnaire on Type D personality (DS14) and illness perceptions (B-IPQ); 81% (n=3977) responded. 750 (19%) patients had a Type D personality. They believe their illness has significantly more serious consequences, will last significantly longer, and experience significantly more symptoms that they attribute to their illness. Also, they are more concerned about their illness, and their disease more often influences them emotionally. Differences regarding 'consequences', 'concern' and 'emotional response' were also clinically relevant. The majority of patients stated that the cause of their disease was unknown (23.3%), hereditary (20.3%), lifestyle (15.1%), psychological distress (11.9%) or other (11.6%). Significant differences in perceptions on cause of disease between Type Ds and non-Type Ds were found for psychological distress (16.2 vs. 10.9%; p<0.01), randomness (1.7 vs. 5.3%; p<0.01) and unknown (18.8 vs. 24.4%; p<0.01). Multivariate analyses showed that Type D was negatively associated with 'coherence' and positively with 'consequences', 'timeline', 'identity', 'concern', and 'emotional representation'. These results elucidate the associations between personality and illness perceptions, demonstrating their close interrelatedness. Our study may be helpful in further developing theoretical models regarding giving meaning to illness and the illness perceptions that the illness elicits. Future studies should investigate whether interventions can positively impact illness perceptions of Type D cancer patients.
The aim of this study was to provide insight into the relationship between information provision ... more The aim of this study was to provide insight into the relationship between information provision and illness perceptions among cancer survivors. 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). 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). 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.
The present study explored illness perceptions of end stage renal disease (ESRD) patients on both... more The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhal's self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Jan 28, 2015
Colorectal cancer (CRC) survivors who remain fatigued during long-term follow-up are at risk for ... more Colorectal cancer (CRC) survivors who remain fatigued during long-term follow-up are at risk for worse health outcomes and need relevant interventions most. The aim of this study is to prospectively assess cancer-related fatigue (CRF) and four categories of CRF correlates (clinical characteristics, demographic characteristics, behavior/well-being, functional status). CRC survivors diagnosed between 2000 and 2009, as registered in the population-based Eindhoven Cancer Registry, completed the Fatigue Assessment Scale at three annual time points. Linear mixed models were used to assess the course of CRF and identify its correlates. CRF levels were relatively stable over time. Being female, young (≤65 years of age), and single; having a low educational level; treatment with chemotherapy; and having one or more comorbid conditions were associated with higher CRF scores. Years since diagnosis, radiotherapy, and disease stage were not related to CRF over time. Significant between- and with...
Study Type--Therapy (outcomes research) Level of Evidence 2b. What's known on the subject? an... more Study Type--Therapy (outcomes research) Level of Evidence 2b. What's known on the subject? and What does the study add? Comorbid diabetes can affect prostate cancer treatment decision-making and outcomes. Few longitudinal studies have investigated the effect of comorbid diabetes on general and cancer-specific health-related quality of life (HRQL) in prostate cancer. Our study found that men with prevalent diabetes (pre-prostate cancer diagnosis) generally had the poorest general HRQL, urinary control and sexual function scores over time, independent of treatment. Non-diabetic men had the best scores and men with incident diabetes (post-prostate cancer diagnosis) reported intermediate scores. OBJECTIVE • To investigate the association between prostate cancer, diabetes, and long-term general and cancer-specific health-related quality of life (HRQL) in a cohort of men with non-metastatic prostate cancer. PATIENTS AND METHODS • We used data from self-administered surveys to assess t...
Journal of cancer survivorship : research and practice, Jan 3, 2015
This study assessed differences in neuropathic symptoms between colorectal cancer (CRC) patients ... more This study assessed differences in neuropathic symptoms between colorectal cancer (CRC) patients with and without diabetes. Moreover, we aimed to explore whether neuropathic symptoms could be explained by the receipt of chemotherapy as it was previously shown that cancer patients with diabetes less often receive chemotherapy. Data from a cross-sectional study among CRC patients (2-11Â years after diagnosis) was used. Data were collected by the Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry which is linked to clinical data from the population-based Eindhoven Cancer Registry. Diabetes status was self-reported and neuropathic symptoms were measured with the European Organization for Research and Treatment of Cancer quality of life questionnaire-chemotherapy-induced peripheral neuropathy 20 (EORTC QLQ-CIPN20). Two hundred eighteen CRC patients with diabetes were matched on age and sex to 975 CRC patients without diabetes...
This study examined the physical and mental consequences of an ostomy among 1-10-year rectal canc... more This study examined the physical and mental consequences of an ostomy among 1-10-year rectal cancer survivors. Patients with rectal cancer diagnosed from 2000 to 2009, as registered in the population-based Eindhoven Cancer Registry, received a questionnaire on quality of life (QOL; EORTC QLQ-C30), disease-specific health status (EORTC QLQ-CR38), depression and anxiety (HADS), illness perceptions (Brief Illness Perception Questionnaire), and health care utilization; 76% (n = 1019) responded. A total of 408 (43%) rectal cancer survivors had an ostomy at survey and they reported a statistically significant and clinically relevant lower physical, role, and social functioning, and global health status/QOL but fewer problems with constipation and diarrhea compared with those without an ostomy. Also, they had a significantly worse body image, more male sexual problems, and fewer gastrointestinal problems although these differences were not clinically relevant. No differences regarding the prevalence of symptoms of anxiety and depression were found. Survivors with an ostomy believed that their illness have significantly more serious consequences, will last longer (clinically relevant), and were more concerned about their illness compared with those without an ostomy. Survivors with an ostomy visited their medical specialist, but not their general practitioner, significantly more often. Also, they more often received additional support after cancer treatment. Rectal cancer survivors with an ostomy have a lower QOL, worse illness perceptions, and a higher health care consumption compared with those without an ostomy 1-10 years after diagnosis.
The health status and psychosocial well-being of multiple primary cancer (MPC) survivors are unde... more The health status and psychosocial well-being of multiple primary cancer (MPC) survivors are under-researched. 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). 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. 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.
The present study explored illness perceptions of end stage renal disease (ESRD) patients on both... more The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhal's self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients participating in the NECOSAD-study. Compared to HD patients, PD patients experienced more personal control and had a better understanding of the illness. Illness perceptions explained from 17 to 51% of the variance in quality of life scores. Perception of more symptoms, more consequences and lower personal control were associated with lower well-being. The concept of illness perceptions is useful in understanding the impact of ESRD and of dialysis treatment on quality of life. Interventions aimed at providing more knowledge about ESRD and dialysis, and provision of skills to coping with the illness and its consequences may improve quality of life in dialysis patients.
Self-regulation theory explains how patients&... more Self-regulation theory explains how patients' illness perceptions influence self-management behaviour (e.g. via adherence to treatment). Following these assumptions, we explored whether illness perceptions of ESRD-patients are related to mortality rates. Illness perceptions of 182 patients participating in the NECOSAD-2 study in the period between December 2004 and June 2005 were assessed. Cox proportional hazard models were used to estimate whether subsequent all-cause mortality could be attributed to illness perception dimensions. One-third of the participants had died at the end of the follow-up. Mortality rates were higher among patients who believed that their treatment was less effective in controlling their disease (perceived treatment control; RR = 0.71, P = 0.028). This effect remained stable after adjusting for sociodemographic and clinical variables (RR = 0.65, P = 0.015). If we consider risk factors for mortality, we tend to rely on clinical parameters rather than on patients' representations of their illness. Nevertheless, results from the current exploration may suggest that addressing patients' personal beliefs regarding the effectiveness of treatment can provide a powerful tool for predicting and perhaps even enhancing survival.
Social support is a consistent predictor of survival, as evidenced in empirical studies in patien... more Social support is a consistent predictor of survival, as evidenced in empirical studies in patients with cancer or cardiovascular disease. In the area of renal diseases, this topic has not yet been studied extensively. This study, therefore, aimed to investigate the association between social support and survival for patients on dialysis. Between December 1998 and January 2002, 528 incident haemodialysis (HD) and peritoneal dialysis (PD) patients from multiple centres in The Netherlands were consecutively recruited as part of the NECOSAD-2 study. Patients completed the Social Support List (SSL) at 3 months after the start of dialysis. The SSL measured two aspects of social support: interaction and discrepancy. Cox regression analysis was used to estimate all-cause mortality risk from baseline till censor date on 1 January 2005. Perceiving a discrepancy between expected and received social support was associated with increased mortality: social companionship (RR(adj): 1.06, 95% CI: 1.00-1.13), daily emotional support (RR(adj): 1.10, 95% CI: 1.02-1.18), and total support (RR(adj): 1.02, 95% CI: 1.00-1.04). This association was similar for PD and HD patients. Social support (interaction) was not associated with survival, neither in the whole sample nor when stratified by therapy modality. These results point to the importance of psychosocial risk factors for mortality in patients on dialysis. More efforts are needed to improve support for these patients.
To examine the association between Type D personality and illness perceptions among colorectal ca... more To examine the association between Type D personality and illness perceptions among colorectal cancer survivors 1-10years post-diagnosis. Data from two population-based surveys on colorectal cancer survivors was used. Patients diagnosed between 1998 and 2009, as registered in the Eindhoven Cancer Registry, received a questionnaire on Type D personality (DS14) and illness perceptions (B-IPQ); 81% (n=3977) responded. 750 (19%) patients had a Type D personality. They believe their illness has significantly more serious consequences, will last significantly longer, and experience significantly more symptoms that they attribute to their illness. Also, they are more concerned about their illness, and their disease more often influences them emotionally. Differences regarding 'consequences', 'concern' and 'emotional response' were also clinically relevant. The majority of patients stated that the cause of their disease was unknown (23.3%), hereditary (20.3%), lifestyle (15.1%), psychological distress (11.9%) or other (11.6%). Significant differences in perceptions on cause of disease between Type Ds and non-Type Ds were found for psychological distress (16.2 vs. 10.9%; p<0.01), randomness (1.7 vs. 5.3%; p<0.01) and unknown (18.8 vs. 24.4%; p<0.01). Multivariate analyses showed that Type D was negatively associated with 'coherence' and positively with 'consequences', 'timeline', 'identity', 'concern', and 'emotional representation'. These results elucidate the associations between personality and illness perceptions, demonstrating their close interrelatedness. Our study may be helpful in further developing theoretical models regarding giving meaning to illness and the illness perceptions that the illness elicits. Future studies should investigate whether interventions can positively impact illness perceptions of Type D cancer patients.
The aim of this study was to provide insight into the relationship between information provision ... more The aim of this study was to provide insight into the relationship between information provision and illness perceptions among cancer survivors. 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). 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). 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.
The present study explored illness perceptions of end stage renal disease (ESRD) patients on both... more The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhal's self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Jan 28, 2015
Colorectal cancer (CRC) survivors who remain fatigued during long-term follow-up are at risk for ... more Colorectal cancer (CRC) survivors who remain fatigued during long-term follow-up are at risk for worse health outcomes and need relevant interventions most. The aim of this study is to prospectively assess cancer-related fatigue (CRF) and four categories of CRF correlates (clinical characteristics, demographic characteristics, behavior/well-being, functional status). CRC survivors diagnosed between 2000 and 2009, as registered in the population-based Eindhoven Cancer Registry, completed the Fatigue Assessment Scale at three annual time points. Linear mixed models were used to assess the course of CRF and identify its correlates. CRF levels were relatively stable over time. Being female, young (≤65 years of age), and single; having a low educational level; treatment with chemotherapy; and having one or more comorbid conditions were associated with higher CRF scores. Years since diagnosis, radiotherapy, and disease stage were not related to CRF over time. Significant between- and with...
Study Type--Therapy (outcomes research) Level of Evidence 2b. What's known on the subject? an... more Study Type--Therapy (outcomes research) Level of Evidence 2b. What's known on the subject? and What does the study add? Comorbid diabetes can affect prostate cancer treatment decision-making and outcomes. Few longitudinal studies have investigated the effect of comorbid diabetes on general and cancer-specific health-related quality of life (HRQL) in prostate cancer. Our study found that men with prevalent diabetes (pre-prostate cancer diagnosis) generally had the poorest general HRQL, urinary control and sexual function scores over time, independent of treatment. Non-diabetic men had the best scores and men with incident diabetes (post-prostate cancer diagnosis) reported intermediate scores. OBJECTIVE • To investigate the association between prostate cancer, diabetes, and long-term general and cancer-specific health-related quality of life (HRQL) in a cohort of men with non-metastatic prostate cancer. PATIENTS AND METHODS • We used data from self-administered surveys to assess t...
Journal of cancer survivorship : research and practice, Jan 3, 2015
This study assessed differences in neuropathic symptoms between colorectal cancer (CRC) patients ... more This study assessed differences in neuropathic symptoms between colorectal cancer (CRC) patients with and without diabetes. Moreover, we aimed to explore whether neuropathic symptoms could be explained by the receipt of chemotherapy as it was previously shown that cancer patients with diabetes less often receive chemotherapy. Data from a cross-sectional study among CRC patients (2-11Â years after diagnosis) was used. Data were collected by the Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry which is linked to clinical data from the population-based Eindhoven Cancer Registry. Diabetes status was self-reported and neuropathic symptoms were measured with the European Organization for Research and Treatment of Cancer quality of life questionnaire-chemotherapy-induced peripheral neuropathy 20 (EORTC QLQ-CIPN20). Two hundred eighteen CRC patients with diabetes were matched on age and sex to 975 CRC patients without diabetes...
This study examined the physical and mental consequences of an ostomy among 1-10-year rectal canc... more This study examined the physical and mental consequences of an ostomy among 1-10-year rectal cancer survivors. Patients with rectal cancer diagnosed from 2000 to 2009, as registered in the population-based Eindhoven Cancer Registry, received a questionnaire on quality of life (QOL; EORTC QLQ-C30), disease-specific health status (EORTC QLQ-CR38), depression and anxiety (HADS), illness perceptions (Brief Illness Perception Questionnaire), and health care utilization; 76% (n = 1019) responded. A total of 408 (43%) rectal cancer survivors had an ostomy at survey and they reported a statistically significant and clinically relevant lower physical, role, and social functioning, and global health status/QOL but fewer problems with constipation and diarrhea compared with those without an ostomy. Also, they had a significantly worse body image, more male sexual problems, and fewer gastrointestinal problems although these differences were not clinically relevant. No differences regarding the prevalence of symptoms of anxiety and depression were found. Survivors with an ostomy believed that their illness have significantly more serious consequences, will last longer (clinically relevant), and were more concerned about their illness compared with those without an ostomy. Survivors with an ostomy visited their medical specialist, but not their general practitioner, significantly more often. Also, they more often received additional support after cancer treatment. Rectal cancer survivors with an ostomy have a lower QOL, worse illness perceptions, and a higher health care consumption compared with those without an ostomy 1-10 years after diagnosis.
The health status and psychosocial well-being of multiple primary cancer (MPC) survivors are unde... more The health status and psychosocial well-being of multiple primary cancer (MPC) survivors are under-researched. 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). 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. 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.
The present study explored illness perceptions of end stage renal disease (ESRD) patients on both... more The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhal's self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients participating in the NECOSAD-study. Compared to HD patients, PD patients experienced more personal control and had a better understanding of the illness. Illness perceptions explained from 17 to 51% of the variance in quality of life scores. Perception of more symptoms, more consequences and lower personal control were associated with lower well-being. The concept of illness perceptions is useful in understanding the impact of ESRD and of dialysis treatment on quality of life. Interventions aimed at providing more knowledge about ESRD and dialysis, and provision of skills to coping with the illness and its consequences may improve quality of life in dialysis patients.
Self-regulation theory explains how patients&... more Self-regulation theory explains how patients' illness perceptions influence self-management behaviour (e.g. via adherence to treatment). Following these assumptions, we explored whether illness perceptions of ESRD-patients are related to mortality rates. Illness perceptions of 182 patients participating in the NECOSAD-2 study in the period between December 2004 and June 2005 were assessed. Cox proportional hazard models were used to estimate whether subsequent all-cause mortality could be attributed to illness perception dimensions. One-third of the participants had died at the end of the follow-up. Mortality rates were higher among patients who believed that their treatment was less effective in controlling their disease (perceived treatment control; RR = 0.71, P = 0.028). This effect remained stable after adjusting for sociodemographic and clinical variables (RR = 0.65, P = 0.015). If we consider risk factors for mortality, we tend to rely on clinical parameters rather than on patients' representations of their illness. Nevertheless, results from the current exploration may suggest that addressing patients' personal beliefs regarding the effectiveness of treatment can provide a powerful tool for predicting and perhaps even enhancing survival.
Social support is a consistent predictor of survival, as evidenced in empirical studies in patien... more Social support is a consistent predictor of survival, as evidenced in empirical studies in patients with cancer or cardiovascular disease. In the area of renal diseases, this topic has not yet been studied extensively. This study, therefore, aimed to investigate the association between social support and survival for patients on dialysis. Between December 1998 and January 2002, 528 incident haemodialysis (HD) and peritoneal dialysis (PD) patients from multiple centres in The Netherlands were consecutively recruited as part of the NECOSAD-2 study. Patients completed the Social Support List (SSL) at 3 months after the start of dialysis. The SSL measured two aspects of social support: interaction and discrepancy. Cox regression analysis was used to estimate all-cause mortality risk from baseline till censor date on 1 January 2005. Perceiving a discrepancy between expected and received social support was associated with increased mortality: social companionship (RR(adj): 1.06, 95% CI: 1.00-1.13), daily emotional support (RR(adj): 1.10, 95% CI: 1.02-1.18), and total support (RR(adj): 1.02, 95% CI: 1.00-1.04). This association was similar for PD and HD patients. Social support (interaction) was not associated with survival, neither in the whole sample nor when stratified by therapy modality. These results point to the importance of psychosocial risk factors for mortality in patients on dialysis. More efforts are needed to improve support for these patients.
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Papers by Melissa Thong