Population-based PROFILES Registry Research Articles

Is CT-based body composition associated with long-term chemotherapy-induced peripheral neuropathy in colorectal cancer survivors?

BackgroundChemotherapy-induced peripheral neuropathy (CIPN) is a common side effect among colorectal cancer (CRC) survivors, and the severity is mainly dependent on the chemotherapy dose. Nowadays, chemotherapy dose is based on body surface area, while determination based on more accurate measures of body composition may be better. This study aimed to investigate the association between body composition and long-term CIPN among CRC survivors 2–11 years after diagnosis.MethodsData from CRC survivors from the population-based PROFILES registry were used. Survivors were included when they received chemotherapy, filled in the EORTC QLQ-CIPN20, and had a computed tomography (CT) scan at diagnosis (n = 202). Total, sensory, motor, and autonomic CIPN were based upon the EORTC QLQ-CIPN20. The abdominal CT scans were used to determine skeletal muscle index (SMI), skeletal muscle density (SMD), visceral adipose tissue (VAT), subcutaneous adipose tissue (SAT), and total adipose tissue (TAT). Logistic regression was used to analyze the association between CIPN outcomes and body composition variables.ResultsCIPN was experienced by 64% of the CRC survivors several years after chemotherapy. More SAT was associated with a higher odds of reporting total CIPN (OR = 1.01 95% CI 1.00–1.01, p = 0.01), motor CIPN (OR = 1.01 95% CI 1.00–1.01, p = 0.01), and sensory CIPN (OR = 1.01 95% CI 1.00–1.01, p = 0.04). No associations of other body composition parameters with CIPN were observed.ConclusionOnly SAT was associated with total, motor, and sensory CIPN. Based on these results, we cannot conclude that determining the chemotherapy dose based on body composition is preferred over determining the chemotherapy dose based on body surface to prevent CIPN. More research is needed to assess associations of body composition with CIPN, a common side effect of chemotherapy.

Type of treatment, symptoms and patient satisfaction play an important role in primary care contact during prostate cancer follow-up: results from the population-based PROFILES registry

BackgroundWith the increasing attention for the role of General Practitioners (GPs) after cancer treatment, it is important to better understand the involvement of GPs following prostate cancer treatment. This study investigates factors associated with GP contact during follow-up of prostate cancer survivors, such as patient, treatment and symptom variables, and satisfaction with, trust in, and appraised knowledge of GPs.MethodsOf 787 prostate cancer survivors diagnosed between 2007 and 2013, and selected from the Netherlands Cancer Registry, 557 (71%) responded to the invitation to complete a questionnaire. Multivariable logistic regression analyses were performed to investigate which variables were associated with GP contact during follow- up.ResultsIn total, 200 (42%) prostate cancer survivors had contact with their GP during follow-up, and 76 (16%) survivors preferred more contact. Survivors who had an intermediate versus low educational level (OR = 2.0) were more likely to have had contact with their GP during follow-up. Survivors treated with surgery (OR = 2.8) or hormonal therapy (OR = 3.5) were also more likely to seek follow-up care from their GP compared to survivors who were treated with active surveillance. Patient reported bowel symptoms (OR = 1.4), hormonal symptoms (OR = 1.4), use of incontinence aids (OR = 1.6), and being satisfied with their GP (OR = 9.5) were also significantly associated with GP contact during follow-up.ConclusionsEducation, treatment, symptoms and patient satisfaction were associated with GP contact during prostate cancer follow-up. These findings highlight the potential for adverse side-effects to be managed in primary care. In light of future changes in cancer care, evaluating prostate cancer follow-up in primary care remains important.

Is sleep associated with BMI, waist circumference, and diet among long-term colorectal cancer survivors? Results from the population-based PROFILES registry.

In the general population, poor sleep quality and short sleep duration are associated with a higher body mass index (BMI) and waist circumference (WC), and an unhealthy diet. The aim of this study was to assess if the association between sleep quality and duration and BMI, WC, and diet quality also exists among colorectal cancer (CRC) survivors, as many CRC survivors have an unhealthy weight and diet. Cross-sectional data from a longitudinal CRC cohort were used. In this study, survivors were 4-13years post diagnosis. The Pittsburgh Sleep Quality Index (PSQI) was used to assess both sleep quality and sleep duration. Diet quality was assessed by scoring adherence (low, moderate, high) to the 2007 World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) recommendations of five food groups and nutrients: fruit and vegetables, dietary fiber, red and processed meat, alcoholic beverages, and sugary drinks, using a brief diet screener. BMI and WC were self-measured. Associations were analyzed by multivariable linear and multinomial logistic regression analyses. Among 1002 CRC survivors, 23% reported poor sleep quality (PSQI score ≥ 8) and 24% reported short sleep duration (≤ 6h). No associations between sleep and BMI, WC, and diet quality were found. Sleep problems are common in long-term CRC survivors; however, sleep quality and duration was not associated with BMI, WC, and diet quality in this population. It is unknown why the results differ from findings in the general population.

Untangling the relationship between negative illness perceptions and worse quality of life in patients with advanced cancer\u2014a study from the population-based PROFILES registry

PurposeQuality of life (QoL) is an important yet complex outcome of care in patients with advanced cancer. QoL is associated with physical and psychosocial symptoms and with patients’ illness perceptions (IPs). IPs are modifiable cognitive constructs developed to make sense of one’s illness. It is unclear how IPs influence patients’ QoL. A better understanding of this relationship can inform and direct high quality care aimed at improving patients’ QoL. We therefore investigated the mediating role of anxiety and depression in the association of IPs with QoL.MethodsData from 377 patients with advanced cancer were used from the PROFILES registry. Patients completed measures on IPs (BIPQ), QoL (EORTC QLQ-C30), and symptoms of anxiety and depression (HADS). Mediation analyses were conducted to decompose the total effect of IPs on QoL into a direct effect and indirect effect.ResultsAll IPs but one (“Comprehensibility”) were negatively associated with QoL (p<0.001); patients with more negative IPs tended to have worse QoL. The effect was strongest for patients who felt that their illness affected their life more severely (“Consequences”), patients who were more concerned about their illness (“Concern”), and patients who thought that their illness strongly affected them emotionally (“Emotions”). Anxiety mediated 41–87% and depression mediated 39–69% of the total effect of patients’ IPs on QoL.ConclusionNegative IPs are associated with worse QoL. Anxiety and depression mediate this association. Targeting symptoms of anxiety and depression, through the modification of IPs, has the potential to improve QoL of patients with advanced cancer.

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

ObjectiveOur 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.MethodsData 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.ResultsThe 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.ConclusionIn 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 SurvivorsAlthough 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.

Heterogeneity in Quality of Life of Long-Term Colon Cancer Survivors: A Latent Class Analysis of the Population-Based PROFILES Registry.

BackgroundLong‐term colon cancer survivors present heterogeneous health‐related quality of life (HRQOL) outcomes. We determined unobserved subgroups (classes) of survivors with similar HRQOL patterns and investigated their stability over time and the association of clinical covariates with these classes.Materials and MethodsData from the population‐based PROFILES registry were used. Included were survivors with nonmetastatic (TNM stage I–III) colon cancer (n = 1,489). HRQOL was assessed with the Dutch translation of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 version 3.0. Based on survivors’ HRQOL, latent class analysis (LCA) was used to identify unobserved classes of survivors. Moreover, latent transition analysis (LTA) was used to investigate changes in class membership over time. Furthermore, the effect of covariates on class membership was assessed using multinomial logistic regression.ResultsLCA identified five classes at baseline: class 1, excellent HRQOL (n = 555, 37.3%); class 2, good HRQOL with prevalence of insomnia (n = 464, 31.2%); class 3, moderate HRQOL with prevalence of fatigue (n = 213, 14.3%); class 4, good HRQOL with physical limitations (n = 134, 9.0%); and class 5, poor HRQOL (n = 123, 8.3%). All classes were stable with high self‐transition probabilities. Longer time since the diagnosis, no comorbid conditions, and male sex were associated with class 1, whereas older age was associated with class 4. Clinical covariates were not associated with class membership.ConclusionThe identified classes are characterized by distinct patterns of HRQOL and can support patient‐centered care. LCA and LTA are powerful tools for investigating HRQOL in cancer survivors.Implications for PracticeLong‐term colon cancer survivors show great heterogeneity in their health‐related quality of life. This study identified five distinct clusters of survivors with similar patterns of health‐related quality of life and showed that these clusters remain stable over time. It was also shown that these clusters do not significantly differ in tumor characteristics or received treatment. Cluster membership of long‐term survivors can be identified by sociodemographic characteristics but is not predetermined by diagnosis and treatment.

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.

Diagnosed with a common cancer at an unusual age: causal attributions of survivors of adolescent and young adult colorectal cancer.

Insight into the causes of colorectal cancer (CRC) in adolescent and young adult (AYA) patients is limited. Without definitive information, patients often shape their own beliefs on the cause of their illness, developing causal attributions. This study aims to examine the causal attributions of CRC in AYA patients, compare these with middle-aged and older adults CRC patient groups and explore the association between causal attributions and psychological distress. Two cross-sectional questionnaire studies were conducted among CRC survivors diagnosed between 1998 and 2007 using the population-based PROFILES registry. Three groups were defined by age at diagnosis: AYA (18-39years; n = 67), middle-aged (40-70years; n = 1993) and older adult survivors (70+ years; n = 1922). Causal attributions were assessed in a single free-text item from the Brief Illness Perception Questionnaire and psychological distress measured by the Hospital Anxiety and Depression Scale. AYA survivors most often attributed their CRC to heredity (36.4%), lifestyle (14.5%) and chance (10.9%). AYA survivors attributed their CRC to these causes more frequently than middle-aged and older adult CRC survivors. AYA survivors who attributed their CRC to causes out of their control (chance, heredity) showed significantly lower mean scores on anxiety (4.3 vs. 5.6; p < 0.01) compared to AYAs who reported causes within their control (lifestyle, stress). No significant difference was found for depression. AYA patients with CRC may benefit from in-depth discussion about the lack of known (biological) causes and how this does not directly imply a lifestyle or stress cause.

Painful and non-painful chemotherapy-induced peripheral neuropathy and quality of life in colorectal cancer survivors: results from the population-based PROFILES registry

PurposeThis study aims to (1) examine the prevalence of painful versus non-painful chemotherapy-induced peripheral neuropathy (CIPN) among long-term colorectal cancer (CRC) survivors, (2) identify sociodemographic, clinical, and psychological factors associated with painful and non-painful CIPN, and (3) examine the associations of painful CIPN with health-related quality of life (HRQoL) in comparison with non-painful CIPN, i.e., numbness/tingling.MethodsAll CRC survivors diagnosed between 2000 and 2009 as registered by the population-based Netherlands Cancer Registry (Eindhoven region) were eligible for participation. Chemotherapy-treated survivors (n = 477) completed questions on CIPN (EORTC QLQ-CIPN20) and HRQoL (EORTC QLQ-C30).ResultsPainful CIPN was reported by 9% (n = 45) of survivors and non-painful CIPN was reported by 22% (n = 103). Time since diagnosis was related to painful CIPN, and time since diagnosis, a higher disease stage, osteoarthritis, and more anxiety symptoms were related to non-painful CIPN. Finally, survivors with painful CIPN reported a worse global quality of life and worse physical, role, cognitive, and social functioning compared to survivors with non-painful CIPN and those without any sensory CIPN. No differences were found between survivors with non-painful CIPN and those without sensory CIPN.ConclusionsIt seems that painful CIPN must be distinguished from non-painful CIPN, as only painful CIPN was related to a worse HRQoL. Future research is needed to examine whether painful CIPN must be distinguished from non-painful CIPN regarding predictors, mechanisms, and treatment.

The EORTC QLQ-C30 Summary Score as Prognostic Factor for Survival of Patients with Cancer in the "Real-World": Results from the Population-Based PROFILES Registry.

BackgroundHealth‐related quality of life (HRQoL) has been shown to be a prognostic factor for cancer survival in randomized clinical trials and observational “real‐world” cohort studies; however, it remains unclear which HRQoL domains are the best prognosticators. The primary aims of this population‐based, observational study were to (a) investigate the association between the novel European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire‐Core30 (QLQ‐C30) summary score and all‐cause mortality, adjusting for the more traditional sociodemographic and clinical prognostic factors; and (b) compare the prognostic value of the QLQ‐C30 summary score with the global quality of life (QoL) and physical functioning scales of the QLQ‐C30.Materials and MethodsBetween 2008 and 2015, patients with cancer (12 tumor types) were invited to participate in PROFILES disease‐specific registry studies (response rate, 69%). In this secondary analysis of 6,895 patients, multivariate Cox proportional hazard regression models were used to investigate the association between the QLQ‐C30 scores and all‐cause mortality.ResultsIn the overall Cox regression model including sociodemographic and clinical variables, the QLQ‐C30 summary score was associated significantly with all‐cause mortality (hazard ratio [HR], 0.77; 99% confidence interval [CI], 0.71–0.82). In stratified analyses, significant associations between the summary score and all‐cause mortality were observed for colon, rectal, and prostate cancer, non‐Hodgkin lymphoma, chronic lymphocytic leukemia, and multiple myeloma. The QLQ‐C30 summary score had a stronger association with all‐cause mortality than the global QoL scale (HR, 0.82; 99% CI, 0.77–0.86) or the physical functioning scale (HR, 0.81; 95% CI, 0.77–0.85).ConclusionIn a real‐world setting, the QLQ‐C30 summary score has a strong prognostic value for overall survival for a number of populations of patients with cancer above and beyond that provided by clinical and sociodemographic variables. The QLQ‐C30 summary score appears to have more prognostic value than the global QoL, physical functioning, or any other scale within the QLQ‐C30.Implications for PracticeThe finding that health‐related quality of life provides distinct prognostic information beyond known sociodemographic and clinical measures, not only around cancer diagnosis (baseline) but also at follow‐up, has implications for clinical practice. Implementation of cancer survivorship monitoring systems for ongoing surveillance may improve post‐treatment rehabilitation that leads to better outcomes.

Are illness perceptions, beliefs about medicines and Type D personality associated with medication adherence among thyroid cancer survivors? A study from the population-based PROFILES registry

Objective: To examine self-reported medication adherence and its association with illness perceptions, beliefs about medication and personality among thyroid cancer survivors. Methods: Individuals diagnosed with thyroid cancer between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received our survey; 86% (n = 306) responded.Results: Many patients reported that they never forgot taking their medicines (n = 168; 56%), never altered the dose (n = 258; 88%), never stopped taking them (n = 291; 99%), never decided to miss a dose (n = 284; 97%) and never took less than instructed (n = 286; 97%). Fifty-two percent were classified as nonadherent; of which 14% intentional nonadherent only, 70% were nonintentional nonadherent only and 16% were both intentional and nonintentional nonadherent. Nonadherers were younger, more highly educated, more often employed, had a lower stage at diagnosis, and less often reported ≥2 comorbid conditions than adherers. Furthermore, their illness affected them more emotionally and they more often reported that their life would be impossible without their medicine. Logistic regression models showed that higher age, lower education and lower perceived necessity of medication was associated with better adherence while beliefs about medication, illness perceptions, and personality were not associated with adherence.Conclusions: Despite lifelong dependence on supplement therapy, 52% of thyroid cancer survivors were nonadherent.

Older ovarian cancer survivors report lower long-term health-related quality of life than younger survivors: A study from the population-based profiles registry

ObjectiveTo assess long-term differences in health-related quality of life (HRQoL) of older ovarian cancer survivors compared to both an age-matched normative population and to younger survivors. In addition, the differential effect of chemotherapy on HRQoL between older and younger survivors was compared. MethodsOvarian cancer survivors (n = 348) diagnosed between 2000 and 2010, as registered by the Dutch population-based Eindhoven Cancer Registry, were invited to complete the EORTC QLQ-C30 HRQoL questionnaire in 2012. HRQoL outcomes of survivors were compared with an age-matched normative population and older survivors (≥70 years) were compared with younger survivors. ResultsThe questionnaire was returned by 191 ovarian cancer survivors (55%), 31% were aged ≥70 years (n = 59). Compared to the normative population, survivors ≥70 years scored lower on global health status and all functioning subscales except emotional functioning, and they reported more symptoms. Survivors aged <70 years only reported worse physical and cognitive functioning in comparison with the normative population. Most differences were of medium to small clinical relevance. Age appeared to moderate the effect of chemotherapy on HRQoL. Older survivors who had received chemotherapy experienced better physical functioning and less pain and insomnia while the opposite was found in younger survivors. ConclusionIn comparison with an age-matched normative population, older ovarian cancer survivors report lower HRQoL scores than younger survivors. As this represents a selection of long-term survivors, future research should focus on the trajectory of HRQoL from diagnosis throughout treatment and follow-up to identify which factors are related to worse HRQoL in the entire older ovarian cancer population and whether timely interventions are able to improve HRQoL.

Illness perceptions are associated with higher health care use in survivors of endometrial cancer-a study from the population-based PROFILES registry.

According to the Common Sense Model of self-regulation, cancer survivors construct perceptions of their illness as a (mal)adaptive mechanism. These perceptions might impact on health care use. We aimed to explore the association between illness perceptions and health care use in stage I-II endometrial cancer (EC) survivors, and whether these associations differed by time since diagnosis. A survey was conducted in 2008 by the population-based PROFILES registry among EC survivors diagnosed between 1999 and 2007. Survivors (n = 742, 77% response) completed the Brief Illness Perception Questionnaire (BIPQ) and questions on health care use in the past 12months. Clinical data were accessed from the Netherlands Cancer Registry. Multiple logistic regression was used to evaluate the relationship between illness perceptions and health care use. Between 15 and 22% of the survivors had negative illness perceptions. Survivors with more negative perceptions on consequences, timeline, treatment control, identity, cognitive representation, concern, emotion, and emotional representation were more likely to make ≥ 1 visit to their family physician/general practitioner in relation to their cancer when compared with survivors with more positive illness perceptions. More negative perceptions on consequences, timeline, identity, and concern were associated with ≥ 2 general or cancer-related visits to the medical specialists. The association between negative illness perceptions and health care use was more prominent among long-term (>5 years post-diagnosis) EC survivors. Negative illness perceptions among EC survivors were associated with higher health care use. For individuals with maladaptive illness perceptions, visits to their health care provider may reduce worry about their illness. Future research might address the effects of intervening in maladaptive illness perceptions on use of health care in this category of survivors.

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry

PurposeThe ‘Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship’ (PROFILES) registry collects patient-reported outcomes (PROs) from short- and long-term cancer survivors in the Netherlands, in a population-based setting. The aim of this analysis is to assess the generalizability of observational PRO research among cancer survivors by comparing socio-demographic and clinical characteristics, and survival of participants and non-participants in cancer survivors invited for questionnaire research through the PROFILES registry.MethodsBetween 2008 and 2015, cancer survivors with different cancer diagnoses (N = 14,011) were invited to participate in PROFILES registry studies, of whom 69% (N = 9684) participated. Socio-demographic and clinical characteristics and survival data, collected through the Netherlands Cancer Registry, were associated with participation versus non-participation in multivariable logistic regression analyses and cox proportional hazard regression models, respectively.ResultsParticipants had a significantly better survival compared to non-participants (HR = 1.47, P < .01). Participation was associated with male gender, being 60–70 years old, high socio-economic status, receiving any treatment, receiving radiotherapy, having no comorbidities, and a cancer diagnosis 2–3 years before invitation. Sensitivity analysis demonstrates that the health-related quality of life (HRQoL) might be up to 1.3 points lower (scale 0–100) using hot deck imputation compared to non-imputed participant data.ConclusionsCancer survivors not participating in observational PROs research significantly differ from participants, with respect to socio-demographic and clinical characteristics, and survival. Their HRQoL scores may be systematically lower compared to participants. Therefore, even in PRO studies with relatively high participation rates, observed outcomes may represent the healthier patient with better outcomes.

The role of positive psychological changes in anxiety and depression of patients with ovarian tumors and their partners: an observational study from the population-based PROFILES registry

PurposeIt is unknown whether positive psychological changes (e.g., in life perspective, self-perception, and social relationships) after being diagnosed with ovarian cancer can reduce anxiety and depression in patients and their partners. The first aim of the present study was to assess differences in anxiety and depression between patients diagnosed with an ovarian tumor and their partners. The second aim was to explore the mutual associations of patients’ and partners’ posttraumatic growth and their anxiety and depressive symptoms.MethodsParticipants included 130 Dutch couples of which one partner was diagnosed with a borderline ovarian tumor or ovarian cancer between 2000 and 2010, as registered by the Netherlands Cancer Registry. In September 2011, a questionnaire was sent including the Hospital Anxiety and Depression Scale (anxiety and depression) and Cancer Survivors (Partners) Unmet Needs measure (positive psychological changes).ResultsA one-way multivariate analysis of variance showed that patients reported higher anxiety than partners, without differences in depression. Contrasting to our expectations, an actor-partner interdependence model revealed no mutual dyadic associations between positive psychological changes and anxiety or depressive symptoms.ConclusionsBased on these findings, positive psychological change seems to be an independent construct unrelated to anxiety or depression in couples diagnosed with ovarian tumors. Still, as ovarian tumor patients and partners suffer from high anxiety and depression, further research investigating how these feelings can be reduced in couples dealing with an ovarian tumor is necessary.

Independent prognostic value of the EORTC QLQ-C30 summary score on all-cause mortality: Results from the population-based PROFILES registry.

10070Background: Health-related quality of life (HRQoL) has been shown to be a prognostic factor for cancer survival in randomized clinical trials. It is questioned whether this association also ho...

Quality of life in elderly patients with an ostomy - a study from the population-based PROFILES registry.

Ostomies are being placed frequently in surgically treated elderly patients with colorectal cancer (CRC). An insight into the (potential) impact of ostomies on quality of life (QoL) could be useful in patient counselling as well as in the challenging shared treatment decision-making. Patients with CRC diagnosed between 2000 and 2009 and registered in the population-based Eindhoven Cancer Registry received a QoL questionnaire (EORTC QLQ-C30) in 2010. In addition, QoL was compared with an age- and sex-matched normative population. The study included 2299 CRC patients, of whom 494 had an ostomy. No differences were found in reported ostomy-related problems between patients aged ≤65, 66-75 and ≥76years. Ostomy patients aged 66-75 and ≥76years reported significantly lower physical functioning compared with those without an ostomy. In the elderly (those aged ≥76years) ostomates reported a worse physical and social functioning compared with the normative population. All these differences were of small clinical relevance. The impact of an ostomy seems to be more prominent in younger (≤75years old) ostomates, as they experience more functional limitations and a decrease in global health status compared with younger nonostomy patients and the normative population. Although elderly (≥76years old) patients with an ostomy report significantly more limitations in functioning compared with a normative population and elderly CRC patients without an ostomy, the clinical relevance of this finding is limited. In contrast, the impact of an ostomy is more prominent in younger patients. Thus, age itself is not a reason for withholding an ostomy.

Identifying the subtypes of cancer-related fatigue: results from the population-based PROFILES registry

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

The magnitude of neurotoxicity in patients with multiple myeloma and the impact of dose modifications: results from the population-based PROFILES registry.

The aim of this analysis is to assess (1) self-reported chemotherapy-induced peripheral neuropathy (CIPN) symptoms; (2) its association with sociodemographic and clinical characteristics; and (3) treatment dose modifications and its influence on the magnitude of neurotoxicity in a population-based cohort of patients with multiple myeloma (MM). MM patients (n=156), diagnosed between 2000 and 2014, filled out the EORTC QLQ-CIPN20 (65% response). Data on treatment, outcomes, and dose modifications were extracted from the medical files. Fifty-three percent of patients reported at least one and on average three neuropathy symptoms that bothered them the most during the past week, with tingling toes/feet as most reported. In multivariate analysis, thalidomide, especially higher cumulative dose, was associated with neuropathy (β=0.26, CI 95% 0.27-15.34, p=0.04) and CIPN was not associated with age, sex, time since last course of therapy, number of prior therapies, osteoarthritis, or diabetes. Dose modifications were often applied (65%). Although not statistically significant, a trend towards higher sensory (22 vs. 15 vs. 12, p=0.22) and motor neuropathy scores (21 vs. 15 vs. 11, p=0.36) was observed among patients receiving dose modification because of CIPN (31%) compared to those receiving a dose modification for another reason or no dose modification, without altering treatment response. CIPN is a common dose limiting side effect in patients with MM. Severity of CIPN was mainly affected by treatment with thalidomide. In spite of dose modifications, patients still reported somewhat higher neuropathy scores without altered response rates. Early dose modification based on a more reliable tool for CIPN measurements may prove value.

Cancer survivors’ preference for follow-up care providers: a cross-sectional study from the population-based PROFILES-registry

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