Patient-reported outcomes in cancer survivorship: insights from two decades of population-based PROFILES registry research.

PURPOSE: When the field of cancer survivorship research was in its infancy, the PROFILES registry was set up in 2004 to monitor patient-reported outcomes (PROs) in survivors and a normative population. This scoping review aims to summarize lessons learned from developing a population-based PRO registry, focusing on study methodologies, data collection shifts, data utilization, multidisciplinary collaboration, societal impact, and data sharing. METHODS: A systematic computerized literature search through PubMed was performed to collect all publications using data from the PROFILES registry between January 1, 2004, and December 31, 2023. RESULTS: The PROFILES registry's research today encompassed 249 papers from 35 studies. Key insights include the importance of multi-hospital collaboration, which enhances participant inclusion and result generalizability. Optimizing response rates and patient inclusion is achieved through proactive data collection methods such as inclusion by health care professionals, and using both web-based and paper questionnaires. Longitudinal studies, despite their intensive data collection efforts, provide critical insights into the consequences of cancer and its treatment on patient-reported outcomes (PROs) from diagnosis through survivorship. Combining PRO data with comprehensive clinical registry data ensures reliable datasets, crucial for drawing meaningful conclusions. The shift towards multidisciplinary collaboration, open-access publishing, and data sharing all contribute to accessible and impactful research. CONCLUSIONS: This review highlights key insights from the PROFILES registry, emphasizing multi-hospital collaboration, proactive data collection, and the integration of PROs with clinical data. IMPLICATIONS FOR CANCER SURVIVORS: These lessons can guide future research on cancer survivorship, improving methodologies to enhance survivorship care and quality of life through multidisciplinary collaboration and data sharing.

Sex differences in health-related quality of life and psychological distress among colorectal cancer patients: a 2-year longitudinal study.

PURPOSE: While sex differences in the incidence and mortality of colorectal cancer (CRC) are well documented, less is known about sex differences in patients' health-related quality of life (HRQoL) and psychological distress. To enhance patient-tailored care, we aimed to longitudinally examine sex differences in HRQoL and psychological distress among CRC patients from diagnosis up until 2-year follow-up. METHODS: Newly diagnosed CRC patients from four Dutch hospitals were eligible for participation. Patients (N = 334) completed questions on HRQoL (EORTC QLQ-C30) and psychological distress (HADS) before initial treatment (baseline), 4 weeks after surgery, and at 1 and 2 years after diagnosis. Also, HRQoL and psychological distress were assessed in a sex- and age-matched reference population. RESULTS: When directly comparing female (N = 126, 38%) and male (N = 208, 62%) CRC patients, female patients reported significantly worse HRQoL, such as more insomnia at baseline, worse physical and role functioning 4 weeks after surgery, more diarrhea at 1 year, and more pain and constipation at 2-year follow-up. However, a comparison with the reference population revealed larger differences between patients and reference in males than in females. For example, at 1- and 2-year follow-up, male patients reported significantly worse cognitive and social functioning, more insomnia, and more anxiety compared with a reference population. CONCLUSIONS: Especially male CRC patients reported worse HRQoL and more psychological distress when compared with a reference population. IMPLICATIONS FOR CANCER SURVIVORS: Knowledge of sex-specific differences in HRQoL and psychological distress among CRC patients may help healthcare providers anticipate and appropriately address patients' unique healthcare needs.

Colorectal cancer and cardiovascular disease: double the burden when it comes to your health-related quality of life?

BACKGROUND: The prevalence of comorbid cardiovascular disease (CVD) among patients with colorectal cancer (CRC) has increased in the last decades. Previous studies have focused on the impact of comorbid CVD on clinical outcomes in CRC, while its impact on patients' health-related quality of life (HRQoL) is understudied. This study, therefore, relates (new-onset) CVD to HRQoL (i.e., physical, role, cognitive, emotional, and social functioning, and two CVD-related symptom scales fatigue and dyspnea) in a two-year follow-up study among CRC patients. MATERIALS AND METHODS: Newly diagnosed CRC patients from four Dutch hospitals were eligible for participation. Patients (N = 327) completed questions on HRQoL (EORTC QLQ-C30) and the presence and timing of CVDs before initial treatment (baseline) and one and two years after diagnosis. RESULTS: CRC patients with comorbid CVD at cancer diagnosis (n = 72, 22%) reported significantly worse physical functioning at 2-year follow-up compared with patients who never had comorbid CVD (p < .05). CRC patients with new-onset CVD (n = 36, 11%) reported worse global QoL, worse role functioning, and more fatigue at 1 and 2-year follow-up compared with patients who never had comorbid CVD. In addition, they reported more dyspnea at baseline and worse physical functioning at 2-year follow-up (p < .05). Finally, patients with new-onset CVD reported worse global quality of life at 1-year follow-up and worse role functioning and more fatigue at 2-year follow-up, compared with patients with comorbid CVD at cancer diagnosis (p < .05). All significant differences between the three groups were of clinical relevance. CONCLUSIONS: CRC patients with CVD, specifically those with new-onset CVD, reported a significantly and clinically relevant worse HRQoL compared with those who never had comorbid CVD. These findings seem to indicate, although the number is small, that CRC patients might have cardiovascular needs that need to be addressed and that multidisciplinary care is recommended. Larger studies are needed to confirm this.

Determinants and mediating mechanisms of quality of life and disease-specific symptoms among thyroid cancer patients: the design of the WaTCh study.

BACKGROUND: Thyroid cancer (TC) patients are understudied but appear to be at risk for poor physical and psychosocial outcomes. Knowledge of the course and determinants of these deteriorated outcomes is lacking. Furthermore, little is known about mediating biological mechanisms. OBJECTIVES: The WaTCh-study aims to; 1. Examine the course of physical and psychosocial outcomes. 2. Examine the association of demographic, environmental, clinical, physiological, and personality characteristics to those outcomes. In other words, who is at risk? 3. Reveal the association of mediating biological mechanisms (inflammation, kynurenine pathway) with poor physical and psychological outcomes. In other words, why is a person at risk? DESIGN AND METHODS: Newly diagnosed TC patients from 13 Dutch hospitals will be invited. Data collection will take place before treatment, and at 6, 12 and 24 months after diagnosis. Sociodemographic and clinical information is available from the Netherlands Cancer Registry. Patients fill-out validated questionnaires at each time-point to assess quality of life, TC-specific symptoms, physical activity, anxiety, depression, health care use, and employment. Patients are asked to donate blood three times to assess inflammation and kynurenine pathway. Optionally, at each occasion, patients can use a weighing scale with bioelectrical impedance analysis (BIA) system to assess body composition; can register food intake using an online food diary; and can wear an activity tracker to assess physical activity and sleep duration/quality. Representative Dutch normative data on the studied physical and psychosocial outcomes is already available. IMPACT: WaTCh will reveal the course of physical and psychosocial outcomes among TC patients over time and answers the question who is at risk for poor outcomes, and why. This knowledge can be used to provide personalized information, to improve screening, to develop and provide tailored treatment strategies and supportive care, to optimize outcomes, and ultimately increase the number of TC survivors that live in good health.

Self-reported causes of cancer among 6881 survivors with 6 tumour types: results from the PROFILES registry.

OBJECTIVE: Our aim was to describe and compare self-reported causal attributions (interpretations of what caused an illness) among cancer survivors and to assess which sociodemographic and clinical characteristics are associated with them. METHODS: Data from five population-based PROFILES registry samples (i.e. lymphoma (n = 993), multiple myeloma (n = 156), colorectal (n = 3989), thyroid (n = 306), endometrial (n = 741), prostate cancer (n = 696)) were used. Causal attributions were assessed with a single question. RESULTS: The five most often reported causal attributions combined were unknown (21%), lifestyle (19%), biological (16%), other (14%), and stress (12%). Lymphoma (49%), multiple myeloma (64%), thyroid (55%), and prostate (64%) cancer patients mentioned fixed causes far more often than modifiable or modifiable/fixed. Colorectal (33%, 34%, and 33%) and endometrial (38%, 32%, and 30%) cancer survivors mentioned causes that were fixed, modifiable, or both almost equally often. Colorectal, endometrial, and prostate cancer survivors reported internal causes most often, whereas multiple myeloma survivors more often reported external causes, while lymphoma and thyroid cancer survivors had almost similar rates of internal and external causes. Females, those older, those treated with hormonal therapy, and those diagnosed with prostate cancer were less likely to identify modifiable causes while those diagnosed with stage 2, singles, with ≥2 comorbid conditions, and those with endometrial cancer were more likely to identify modifiable causes. CONCLUSION: In conclusion, this study showed that patients report both internal and external causes of their illness and both fixed and modifiable causes. This differsbetween the various cancer types. IMPLICATIONS FOR CANCER SURVIVORS: Although the exact cause of cancer in individual patients is often unknown, having a well-informed perception of the modifiable causes of one's cancer is valuable since it can possibly help survivors with making behavioural adjustments in cases where this is necessary or possible.

Work, daily activities and leisure after cancer.

OBJECTIVE: Determine if cancer survivors have lower participation in paid work, more limitations in daily activities or more limitations in leisure compared with those without cancer, stratified by age (working age ≤65 years; retirement age >65 years). Secondary objectives are identifying sociodemographic or clinical factors associated with work, daily activities or leisure and analysis of the relationship between work, daily activities and leisure. METHODS: Secondary analyses, using logistic regression, were performed on three cohorts (lymphoma, prostate and thyroid cancer) from the Dutch Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship (PROFILES) registry and a nationally representative non-cancer sample. RESULTS: Working-age cancer survivors (n = 926) were significantly (p < 0.001) less likely to participate in paid work and more likely to report limitations in daily activities and leisure compared to the non-cancer cohort (n = 1279). Among retirement aged cancer survivors (n = 1046), paid work was significantly more likely (p < 0.001), as were limitations in leisure (p < 0.05), compared with the non-cancer controls (n = 334). CONCLUSIONS: Cancer impacts daily activities and leisure, as well as paid work. These roles are important for cancer survivors' quality of life, suggesting support to return to these activities may be an important component of survivorship care.

Changes in Perceived Stress and Lifestyle Behaviors in Response to the COVID-19 Pandemic in The Netherlands: An Online Longitudinal Survey Study.

The COVID-19 pandemic has substantial implications for physical and mental wellbeing. This study investigated changes, over time, in lifestyle behaviors and perceived stress during the initial phase of the pandemic and associations with COVID-19 symptoms, in the Dutch general population. An online longitudinal survey study was performed with pre-lockdown measurements in February, and subsequently in April and June 2020 (n = 259, mean age 59 ± 14 years, 59% women). Self-report questionnaires were used to assess weight, diet quality, physical activity, alcohol intake, and smoking. Perceived stress was measured using the validated perceived stress scale (PSS-10). The presence of COVID-19 symptoms (yes/no) was defined as fever, or >3 of the following symptoms: weakness/tiredness, muscle ache, dry cough, loss of smell/taste, and breathing difficulties. Data were analyzed using linear mixed models, adjusted for age, sex, educational level, marital status and (change in) employment status. Minimal increases over time were observed in alcohol intake (0.6 ± 0.7 to 0.7 ± 1.1 glasses/day, p = 0.001) and smoking (9.5 ± 8.7 to 10.9 ± 9.4 cigarettes/day among 10% smokers, p = 0.03), but other lifestyle behaviors remained stable. In April 2020, 15% reported COVID-19-related symptoms, and in June 2020, this was 10%. The presence of COVID-19 symptoms was associated with increased perceived stress (pinteraction = 0.003) and increased alcohol consumption (pinteraction = 0.03) over time. In conclusion, in this prospective study, COVID-19 symptoms were associated with increases in perceived stress and alcohol consumption. Future research on biopsychosocial determinants and underlying mechanisms of lifestyle changes, as a response to the COVID-19 pandemic, is needed.

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

To take cancer survivorship research to the next level, it's important to gain insight in trajectories of changing patient-reported outcomes and impaired recovery after cancer. This is needed as the number of survivors is increasing and a large proportion is confronted with changing health after treatment. Mechanistic research can facilitate the development of personalized risk-stratified follow-up care and tailored interventions to promote healthy cancer survivorship. We describe how these trajectories can be studied by taking the recently extended Dutch population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry as an example. PROFILES combines longitudinal assessment of patient-reported outcomes with novel, ambulatory and objective measures (eg, activity trackers, blood draws, hair samples, online food diaries, online cognitive tests, weighing scales, online symptoms assessment), and cancer registry and pharmacy databases. Furthermore, we discuss methods to optimize the use of a multidomain data collection-like return of individual results to participants, which may improve not only patient empowerment but also long-term cohort retention. Also, advanced statistical methods are needed to handle high-dimensional longitudinal data (with missing values) and provide insight into trajectories of changing patient-reported outcomes after cancer. Our coded data can be used by academic researchers around the world. Registries like PROFILES, which go beyond boundaries of disciplines and institutions, will contribute to better predictions of who will experience changes and why. This is needed to prevent and mitigate long-term and late effects of cancer treatment and to identify new interventions to promote health.

The relation between sleep quality, sleep quantity, and gastrointestinal problems among colorectal cancer survivors: result from the PROFILES registry.

PURPOSE: Common residual symptoms among survivors of colorectal cancer (CRC) are sleep difficulties and gastrointestinal symptoms. Among patients with various gastrointestinal (inflammatory) diseases, sleep quality has been related to gastrointestinal symptoms. For CRC survivors, this relation is unclear; therefore, we examined the association between sleep quality and quantity with gastrointestinal symptoms among CRC survivors. METHODS: CRC survivors registered in the Netherlands Cancer Registry-Southern Region diagnosed between 2000 and 2009 received a survey on sleep quality and quantity (Pittsburgh Sleep Quality Index) and gastrointestinal symptoms (European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire-Colorectal 38, EORTC QLQ-CR38) in 2014 (≥ 4 years after diagnosis). Secondary cross-sectional data analyses related sleep quality and quantity separately with gastrointestinal symptoms by means of logistic regression analyses. RESULTS: In total, 1233 CRC survivors were included, of which 15% reported poor sleep quality. The least often reported gastrointestinal symptom was pain in the buttocks (15.1%) and most often reported was bloating (29.2%). CRC survivors with poor sleep quality were more likely to report gastrointestinal symptoms (p's < 0.01). Survivors who slept < 6 h were more likely to report symptoms of bloating or flatulence, whereas survivors who slept 6-7 h reported more problems with indigestion. CONCLUSIONS: Worse sleep quality and short sleep duration were associated with higher occurrence of gastrointestinal symptoms. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the interplay between sleep quality and gastrointestinal symptoms and underlying mechanisms adds to better aftercare and perhaps reduction of residual gastrointestinal symptoms in CRC survivors by improving sleep quality.

Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry.

PURPOSE: The aim was to investigate the level of self-perceived cognitive functioning and its associated factors among a large population-based cohort of cancer survivors and their matched controls. METHODS: Data were obtained from population-based PROFILES registry cohorts, including colon, rectum, prostate or thyroid cancer, Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), chronic lymphocytic leukemia, multiple myeloma (MM), melanoma, or basal cell carcinoma (BCC)/squamous cell carcinoma (SCC). All patients completed the EORTC QLQ-C30 from which self-perceived cognitive functioning, fatigue, functioning, and global health status/quality of life (GHS/QoL) were used. The PROFILES registry data were linked with the Netherlands Cancer Registry to obtain sociodemographic and clinical data. RESULTS: Six thousand seven hundred eighty-six survivors were included (response rate=76%). Survivors, except for melanoma and BCC/SCC, reported on average lower self-perceived cognitive functioning scores compared to their matched controls (all p's<0.01). Largest differences with the norm were observed in thyroid cancer, HL, NHL and MM, and younger survivors (<50 years). Survivors with lower emotional functioning and more fatigue were more likely to report impaired self-perceived cognitive functioning. CONCLUSION: Self-perceived impaired cognitive functioning is prevalent among a wide range of cancer survivors, especially among survivors <50 years. Approaches targeting cognitive problems including attention for co-occurring symptoms such as fatigue and emotional impairments are needed to improve care for these patients. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors and clinicians should be aware that impaired self-perceived cognitive functioning is a frequently reported consequence of cancer and its treatment among survivors of various cancer types. Clinicians can redirect survivors to a relevant healthcare provider or program to target cognitive problems.

Symptom clusters in 1330 survivors of 7 cancer types from the PROFILES registry: A network analysis.

BACKGROUND: Research into the clustering of symptoms may improve the understanding of the underlying mechanisms that affect survivors' symptom burden. This study applied network analyses in a balanced sample of cancer survivors to 1) explore the clustering of symptoms and 2) assess differences in symptom clustering between cancer types, treatment regimens, and short-term and long-term survivors. METHODS: This study used cross-sectional survey data, collected between 2008 and 2018, from the population-based Patient Reported Outcomes Following Initial Treatment and Long Term Evaluation of Survivorship registry, which included survivors of 7 cancer types (colorectal cancer, breast cancer, ovarian cancer, thyroid cancer, chronic lymphocytic leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma). Regularized partial correlation network analysis was used to explore and visualize the associations between self-reported symptoms (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire) and the centrality of these symptoms in the network (ie, how strongly a symptom was connected to other symptoms) for the total sample and for subgroups separately. RESULTS: In the total sample (n = 1330), fatigue was the most central symptom in the network with moderate direct relationships with emotional symptoms, cognitive symptoms, appetite loss, dyspnea, and pain. These relationships persisted after adjustments for sociodemographic and clinical characteristics. Connections between fatigue and emotional symptoms, appetite loss, dyspnea, and pain were consistently found across all cancer types (190 for each), treatment regimens, and short-term and long-term survivors. CONCLUSIONS: In a heterogenous sample of cancer survivors, fatigue was consistently the most central symptom in all networks. Although longitudinal data are needed to build a case for the causal nature of these symptoms, cancer survivorship rehabilitation programs could focus on fatigue to reduce the overall symptom burden.

Sex-differences in symptoms and functioning in >5000 cancer survivors: Results from the PROFILES registry.

BACKGROUND: Previous reports highlight the greater number of side effects that women experience during cancer treatment, but little is known about sex differences in symptoms and functioning in long-term survivors. METHODS: We investigated sex differences in the prevalence of physical (EORTC QLQ-C30) and emotional symptoms (Hospital Anxiety and Depression Scale) and loss of functioning (EORTC QLQ-C30) in 5339 cancer survivors (55% males). General linear models were computed to assess the differences in symptoms and functioning between female and male cancer survivors and between survivors and an age-matched reference population. RESULTS: The direct comparison between female and male cancer survivors identified more symptoms, such as nausea and vomiting (M = 5.0 versus. 3.2), insomnia (M = 26.1 versus. 15.9), anxiety (M = 5.2 versus. 4.2), and lower physical (M = 77.5 versus. 82.5) and emotional functioning (M = 83.4 versus. 86.3), in female survivors. However, comparison with an age-matched reference population demonstrated that several symptoms, such as fatigue, dyspnea, anxiety and depression, appeared to be more frequent in male patients. The investigation of functioning domains - compared with a reference population - highlighted further sex-specific differences. Female survivors experienced a moderate net loss in physical and cognitive functioning (-6.1 [95% CI = -8.1; -4,1] and -5.2 respectively [95% CI = -7; -3.5]), whereas male survivors displayed a significant net loss in role and social functioning compared to the reference population (-9.9 [95% CI = -11.2; -8.6] and -7.7 [95% CI = -9.6; -7.6] respectively). CONCLUSION: To adequately capture sex differences in symptoms and functioning in long-term cancer survivors, a comparison with a reference population should always be considered. In our study population, this adjustment highlighted a significant and unexpected long-term impact on male patients. Role and social functioning were especially impacted in male patients, emphasizing the need to further investigate these gendered domains.

Towards OPtimal TIming and Method for promoting sUstained adherence to lifestyle and body weight recommendations in postMenopausal breast cancer survivors (the OPTIMUM-study): protocol for a longitudinal mixed-method study.

BACKGROUND: The majority of postmenopausal breast cancer (PMBC) survivors do not adhere to lifestyle recommendations and have excess body weight. In this group, this is associated with poorer health-related quality of life and an increased risk of type II diabetes mellitus, cardiovascular disease, second primary cancers, cancer recurrences, and mortality. Gaining and maintaining a healthy lifestyle and body composition is therefore important. It is unknown when and how sustained adherence to these recommendations can be promoted optimally in PMBC survivors. Therefore, the OPTIMUM study aims to identify the optimal timing and method for promoting sustained adherence to lifestyle and body weight recommendations in PMBC survivors. METHODS: The OPTIMUM-study has a mixed-methods design. To assess optimal timing, a longitudinal observational study will be conducted among approximately 1000 PMBC survivors. The primary outcomes are adherence to lifestyle and body weight recommendations, readiness for change, and need for support. Questionnaires will be administered at 4-6 months after cancer diagnosis (wave 1: during treatment and retrospectively before diagnosis), 1 year after diagnosis (wave 2: after completion of initial treatment), and 1.5 years after diagnosis (wave 3: during follow-up). Wave 2 and 3 include blood sampling, and either wearing an accelerometer for 7 days or completing a 3-day online food diary (randomly assigned at hospital level). To assess the optimal method, behavioural determinants of the primary outcomes will be matched with Behavior Change Techniques using the Behaviour Change Technique Taxonomy. Qualitative research methods will be used to explore perceptions, needs and preferences of PMBC survivors (semi-structured interviews, focus groups) and health care providers (Delphi study). Topics include perceptions on optimal timing to promote adherence; facilitators and motivators of, and barriers towards (sustained) adherence to recommendations; and acceptability of the selected methods. DISCUSSION: The OPTIMUM study aims to gain scientific knowledge on when and how to promote sustained adherence to lifestyle and body weight recommendations among PBMC survivors. This knowledge can be incorporated into guidelines for tailored promotion in clinical practice to improve health outcomes.

Negative illness perceptions are related to poorer health-related quality of life among thyroid cancer survivors: Results from the PROFILES registry.

BACKGROUND: Differentiated thyroid cancer (DTC) reports a poorer health-related quality of life (HRQoL) than a norm population. Patients' illness perceptions are modifiable and known associates of HRQoL in other cancers. The aim was to examine the relationship between illness perceptions and HRQoL among DTC survivors. METHODS: DTC survivors registered in the Netherlands Cancer Registry diagnosed between 1990 and 2008, received a survey on illness perceptions (Brief-Illness Perception Questionnaire; B-IPQ) and HRQoL (European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire-Core 30; EORTC QLQ-C30). Multiple regression analyses were conducted investigating the relation between illness perceptions and HRQoL, while controlling for sociodemographic and clinical characteristics. RESULTS: Two hundred and eighty-four DTC survivors were included. DTC survivors who believed their illness had many negative consequences; who perceived their illness as controllable by treatment; who had strong beliefs symptoms could be attributed to their illness; and who had strong beliefs their illness causes negative emotions, reported a poorer HRQoL. CONCLUSIONS: Stronger negative illness perceptions are related to a poorer HRQoL among DTC survivors.

Negative illness perceptions are related to more fatigue among haematological cancer survivors: a PROFILES study.

Objectives: The common sense model provides a theoretical framework for understanding substantial fatigue among (haematological) cancer survivors based on their illness perceptions. We therefore examined the associations between modifiable illness perceptions and substantial fatigue while controlling for sociodemographic, clinical, and psychological factors (symptoms of depression and anxiety) among haematological cancer survivors.Methods: Data from the population-based PROFILES registry were used. Survivors diagnosed between 1999 and 2013 with Hodgkin lymphoma (N = 164), non-Hodgkin lymphoma (N = 655) and chronic lymphocytic leukaemia (N = 174) were included. Survivors completed the Brief Illness Perception Questionnaire (B-IPQ), the Fatigue Assessment Scale (FAS), and Hospital Anxiety and Depression Scale (HADS). Multivariable logistic regressions analyses were performed for the total group and three haematological cancers separately relating illness perceptions to substantial fatigue (>21 FAS).Results: Haematological cancer survivors with illness perceptions that represent more negative consequences (consequences, OR = 1.27; 95%CI = 1.13-1.42); attribute more symptoms to their illness (identity, OR = 1.29; 95%CI = 1.17-1.43); and have a poorer illness understanding (coherence, 1.13; 1.04-1.22) were more often substantially fatigued. For the remaining five illness perceptions, no significant association was found. Non-Hodgkin lymphoma survivors who reported a poor illness understanding (coherence, OR = 1.35; 95% CI = 1.06-1.72) and chronic lymphocytic leukaemia survivors who reported that treatment can control (OR = 1.25; 95%CI = 1.01-1.55) the illness experienced more often substantial fatigue.Conclusion: Those who experience more consequences of their disease, attribute more symptoms to their illness, and have a poorer illness understanding, have a higher risk to experience substantial levels of fatigue even years after diagnosis. Psychological interventions changing these illness perceptions may be beneficial in reducing fatigue among haematological cancer survivors.

Assessing health-related quality of life in cancer survivors: factors impacting on EORTC QLU-C10D-derived utility values.

PURPOSE: To investigate the factors influencing EORTC QLQ-C30-derived EORTC QLU-C10D utility values across five cancer types (non-Hodgkin lymphoma, multiple myeloma, colorectal, thyroid, and prostate cancer) and a general population sample. METHODS: Data from the Dutch population-based patient-reported outcomes following initial treatment and long-term evaluation of survivorship (PROFILES) registry collected between 2009 and 2012 were used. EORTC QLQ-C30 data were used to estimate utility values by applying the EORTC QLU-C10D instrument using Australian utility weights. Regression analyses were conducted, within and across cancer type, to examine the factors influencing utility values, including patient- and cancer-specific factors, as well as the EORTC QLQ-C30 scale/item scores. RESULTS: The mean utility value for the total cancer sample was 0.791 (SD 0.201), significantly lower than that from the general population (0.865, SD 0.165). Multiple myeloma patients had the lowest utility value at 0.663 (SD 0.244). Physical functioning, pain and nausea and vomiting were the health-related quality of life (HRQoL) domains with the greatest impact on utility values; cognitive functioning and dyspnea had the lowest impact. Of the demographic and clinical factors, unemployment for reasons other than retirement, age older than 75 years, number of comorbidities, and experience of symptoms all had a statistically significant negative impact on utility values. CONCLUSIONS: This study is one of the first to apply the EORTC QLU-C10D to a heterogeneous group of cancer patients. Results can be used to more efficiently target care towards factors influencing HRQoL. Furthermore, it enhances our understanding of how the EORTC QLU-C10D performs across cancer types, supporting its use in cost-utility analyses.

The risk of developing cardiovascular disease is increased for patients with prostate cancer who are pharmaceutically treated for depression.

OBJECTIVE: To examine the associations between pharmaceutically treated anxiety and depression and incident cardiovascular disease (CVD) among 1-year prostate cancer survivors. PATIENTS AND METHODS: A registry-based cohort study design was used to describe the risk of incident CVD in adult 1-year prostate cancer survivors without a history of CVD. Patients with prostate cancer diagnosed between 1999 and 2011 were selected from the Netherlands Cancer Registry. Drug dispenses were retrieved from the PHARMO Database Network and were used as proxy for CVD, anxiety, and depression. Data were analysed using Cox regression analysis to examine the risk associations between pharmaceutically treated anxiety and depression entered as a time-varying predictor with incident CVD in 1-year prostate cancer survivors, while controlling for age, traditional CVD risk factors, and clinical characteristics. RESULTS: Of the 5262 prostate cancer survivors, 327 (6%) developed CVD during the 13-year follow-up period. Prostate cancer survivors who were pharmaceutically treated for depression had an increased risk of incident CVD after full adjustment compared to prostate cancer survivors who were not pharmaceutically treated for depression (hazard ratio [HR] 1.51, 95% confidence interval [CI] 1.06-2.15). The increased risk of incident CVD amongst those pharmaceutically treated for depression compared to those who were not pharmaceutically treated for depression, was only valid among: prostate cancer survivors who were aged ≤65 years (HR 2.91; 95% CI 1.52-5.55); those who were not treated with radiotherapy (HR 1.63; 95% CI 1.01-2.65); those who were treated with hormones (HR 1.76; 95% CI 1.09-2.85); those who were not operated upon (HR 1.55; 95% CI 1.07-2.25); and those with tumour stage III (HR 2.21; 95% CI 1.03-4.74) and stage IV (HR 2.47; 95% CI 1.03-5.89). CONCLUSION: Patients with prostate cancer who were pharmaceutically treated for depression had a 51% increased risk of incident CVD after adjustment for anxiety, age, traditional CVD risk factors, and clinical characteristics. The results emphasise the need to pay attention to (pharmaceutically treated) depressed patients with prostate cancer prior to deciding on prostate cancer treatment and for a timely detection and treatment of CVD.

Cancer comorbidity in patients with non-obstructive coronary artery disease: Depressive symptoms related to C-reactive protein.

BACKGROUND: Based on guidelines for cardiovascular risk assessment among non-cancer populations, depression and anxiety can be seen as risk factors for CVD, on top of cardiotoxic cancer treatment and traditional CVD risk factors among cancer survivors. Increased inflammation can be a shared potential pathophysiological mechanism, as higher levels of inflammation (like C-reactive protein, CRP) are known associates of depression and anxiety. In turn, increased inflammation is involved in the pathogenesis of CVDs. Furthermore, both cancer and cancer treatment including chemotherapy and radiation can lead to elevated levels of inflammation. We will therefore examine whether the relation between depression and anxiety with inflammatory markers among patients with either CVD or cancer is different from those with both conditions. METHOD: The TweeSteden Mild Stenosis (TWIST) study among patients with non-obstructive coronary artery disease (NOCAD, luminal narrowing <60%), a type of ischemic heart disease, previously reported a significant association between depressive symptoms and increased inflammation (measured by high-sensitive (hs)CRP). Of the included NOCAD-patients, 6% had a history of cancer. The TWIST patient sample was therefore used to explore whether the association between depression and elevated inflammation (hsCRP) was similar for NOCAD-patients with and without a history of cancer. RESULTS: The association between depressive symptoms and increased hsCRP levels is stronger among NOCAD-patients with a history of cancer than among NOCAD-patients without a history of cancer. Furthermore, whereas this relation is mediated by lifestyle factors among NOCAD-patients without cancer, the association remained significant after adjusting for BMI, smoking, and physical activity among NOCAD-patients with a history of cancer. CONCLUSION: The stronger association between depression and hsCRP among NOCAD-patients with a history of cancer indicates that there may be an additive or synergistic effect of having NOCAD and cancer for general inflammation and possibly depression.

Having co-morbid cardiovascular disease at time of cancer diagnosis: already one step behind when it comes to HRQoL?

Background: The relation between cardiovascular disease (CVD) present at the time of cancer diagnosis and Health-Related Quality of Life (HRQoL) assessed years after cancer diagnosis has - to our knowledge - not been studied. The objective is, therefore, to examine the relation between co-morbid CVD at cancer diagnosis and HRQoL among cancer survivors diagnosed with colorectal, thyroid, prostate, endometrium, ovarian cancer, melanoma, (non-)Hodgkin lymphoma, chronic lymphocytic leukemia (CLL), or multiple myeloma (MM) in an exploratory population-based cross-sectional study.Material and methods: Analyses were performed on combined data sets from the PROFILES and Netherlands Cancer Registry (NCR). Data on co-morbid CVD at cancer diagnosis was extracted from the NCR. HRQoL was measured via PROFILES at a median of 4.6 years after cancer diagnosis. General Linear Model Analyses were run for the total group of cancer survivors and for each malignancy.Results: In total, 5930 cancer survivors (2281 colorectal, 280 thyroid, 1054 prostate, 177 endometrium, 389 ovarian cancer, 212 melanoma, 874 non-Hodgkin and 194 Hodgkin lymphoma, 242 CLL, and 227 MM survivors) were included. For the total group, survivors who had a CVD at cancer diagnosis (n = 1441, 23.4%) reported statistically significant and clinically important lower scores on global QoL and physical functioning and higher scores for dyspnea (p < .05) compared to those without CVD. Co-morbid CVD at cancer diagnosis was negatively related to global QoL, the five functional scales and the symptoms fatigue and dyspnea across most malignancies (i.e., colorectal, and prostate cancer, non-Hodgkin lymphoma, ovarium cancer, melanoma, and CLL). No significant relations were found among thyroid and endometrium cancer, Hodgkin lymphoma and MM survivors, likely due to small numbers.Conclusion: In conclusion, co-morbid CVD at cancer diagnosis was negatively related to HRQoL, especially to global QoL, physical and role functioning, and the symptoms fatigue and dyspnea.