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.

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.

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.

Type D Personality Associated With Increased Risk for Mortality in Adults With Congenital Heart Disease.

BACKGROUND: Type D personality has been previously shown to increase the risk for mortality in patients with acquired heart disease. OBJECTIVE: We aimed to compare mortality in adult patients with congenital heart disease (CHD) with and without type D. METHODS: Survival was assessed using prospective data from the Dutch national Congenital Corvitia registry for adults with CHD. Patients were randomly selected from the registry and characterized at inclusion in 2009 for the presence of type D using the DS14 questionnaire. RESULTS: One thousand fifty-five patients, with 484 (46%) males, a mean (SD) age of 41 (14) years, 613 (58%) having mild CHD, 348 (33%) having moderate CHD, and 94 (9%) having severe CHD, were included. Type D personality was present in 225 patients (21%). Type D was associated with an increased risk for all-cause mortality independent of age, sex, New York Heart Association class, number of prescribed medications, depression, employment status, and marital status (hazard ratio, 1.94; 95% confidence interval, 1.05-3.57; P = .033). CONCLUSION: Type D personality was associated with an increased risk for all-cause mortality in adult patients with CHD.

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.

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.

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.

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.

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.

Symptoms of anxiety and depression among colorectal cancer survivors from the population-based, longitudinal PROFILES Registry: Prevalence, predictors, and impact on quality of life.

BACKGROUND: The aims of this study were to prospectively assess symptoms of anxiety and depression among survivors of colorectal cancer (CRC), to compare these survivors with a normative population, and to identify subgroups at risk for experiencing symptoms of anxiety and/or depression across a 4-year time period. Also, the impact on health-related quality of life (HRQOL) was studied. METHODS: The population-based Eindhoven Cancer Registry was used to select patients diagnosed with CRC between 2000 and 2009. The Hospital Anxiety and Depression Scale and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (HRQOL) were completed by patients in 2010 (n = 2625 [73% response rate]), 2011, 2012, and 2013 and by an age- and sex-matched normative sample (n = 315) in 2011. RESULTS: Patients reported a significantly higher prevalence of depression (19.0% vs 12.8%) and anxiety (20.9% vs 11.8%) in comparison with the norm. Anxiety was stable, whereas depression scores changed over time, although this was not clinically relevant. A longer time since diagnosis was associated with fewer depressive symptoms over time, whereas older age and being male were associated with less anxiety and more depression. Being married was associated with less anxiety and depression, and a low education level and comorbid conditions were associated with more anxiety and depression. Higher levels of symptoms of depression and anxiety were associated with a lower global quality of life and lower physical, role, cognitive, emotional, and social functioning over time. CONCLUSIONS: Because of the increased prevalence of depression and anxiety among patients with CRC and their negative effect on HRQOL, screening and referral are of the utmost importance, especially among those who are single, have a low educational level, and have comorbid conditions, even years after diagnosis and treatment. Cancer 2018;124:2621-8. © 2018 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

Pharmaceutically treated anxiety but not depression prior to cancer diagnosis predicts the onset of cardiovascular disease among breast cancer survivors.

PURPOSE: To examine the associations between pharmaceutically treated anxiety and depression present in the year prior to breast cancer diagnosis and the risk of incident cardiovascular disease (CVD), while controlling for traditional cardiovascular risk factors and clinical characteristics in a population-based observational study. METHODS: Adult 1-year breast cancer survivors (n = 7227), diagnosed between 01-01-1999 and 12-31-2010, with no history of CVD, were selected from the Netherlands Cancer Registry. Drug dispensing data were derived from the PHARMO Database Network and used as proxy for CVD, anxiety, and depression. By multivariable Cox regression analysis, we examined the risk associated with pharmaceutically treated anxiety and depression for developing CVD after cancer diagnosis, adjusting for age, pharmaceutically treated hypertension, hypercholesterolemia, and diabetes mellitus in the year prior to cancer diagnosis, tumor stage, and cancer treatment. RESULTS: During the 13-year follow-up period, 193 (3%) breast cancer survivors developed CVD. Women pharmaceutically treated for anxiety in the year prior to their cancer diagnosis had a 48% increased hazard for CVD [HR = 1.48; 95% CI 1.05-1.08] after full adjustment. This association was restricted to breast cancer survivors who were 65 years or younger. Depression was not associated with CVD risk [HR = 0.89; 95% CI 0.52-1.53]. Older age [HR = 1.06; 95% CI 1.05-1.08], hypertension [HR = 1.80; 95% CI 1.32-2.46], and hypercholesterolemia [HR = 1.63; 95% CI 1.15-2.33] were associated with an increased hazard for incident CVD, whereas hormone therapy [HR = 0.59; 95% CI 0.42-0.83] was protective. CONCLUSIONS: Anxiety present in the year prior to breast cancer diagnosis increases the risk of incident CVD in 1-year breast cancer survivors, after adjustment for depression, traditional cardiovascular risk factors, and clinical characteristics.

The impact of co-morbidity on health-related quality of life in breast cancer survivors and controls.

BACKGROUND: The objective of this study was: 1) to compare health-related quality of life (HRQoL) scores of breast cancer survivors to matched controls; and 2) to examine the relative impact (explained variance) of the type and number of co-morbidities on HRQoL. MATERIAL AND METHODS: Data from the KARMA project was used in this cross-sectional study. For each woman diagnosed with breast cancer (n = 2552) there were two healthy age- and geographically matched females (n = 5104). Breast cancer survivors were categorized according to time since diagnosis: recently diagnosed (0-1 year), short- (2-5 years), mid- (6-10 years), and long-term survivors (> 10 years). Women completed a questionnaire addressing demographics (age, educational level, and geographical location), lifestyle factors (body mass index (BMI) and smoking), co-morbidities, and HRQoL. The difference in explained variance in six HRQoL-domains between demographics, lifestyle factors, and co-morbidity in women with breast cancer and matched controls was examined by hierarchical regression analyses. RESULTS AND CONCLUSION: Women recently diagnosed (n = 63), reported the worst HRQoL followed by short-term survivors (2-5 years, n = 863). Thereafter, HRQoL scores further improved (6-10 years, n = 726), and were comparable to healthy females after 10 years (n = 893). Co-morbidity has a negative impact on HRQoL, which increased with time after diagnosis. Cardiovascular disease and depression were the strongest associates. Breast cancer survivors report clinically significant improvement in HRQoL scores six years after diagnosis. Co-morbidity has a negative impact on HRQoL, which increases with time after diagnosis, even though the number of co-morbidities remains stable. In long-term survivors there should be increasing awareness of co-morbidity and its impact on HRQoL.

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.

Peri-operative care in adults with congenital heart disease: room for improvement in after care.

BACKGROUND: Patient satisfaction with care has received little attention within the field of congenital heart disease. Our objective was to examine patient satisfaction with the care received when undergoing open-heart surgery in order to identify the best and worst aspects of peri-operative care. Moreover, we examined whether having contact with a specialised nurse in addition to usual care is associated with higher patient satisfaction levels. METHODS: Patient satisfaction was measured by the Satisfaction with Hospital Care Questionnaire, evaluating nine aspects of care by answering individual items and giving overall grades. A top 10 of the best and worst items was selected. Linear regression analyses were used to examine the relationship between having contact with a specialised nurse and patient satisfaction (9 grades), independent of patient characteristics--sex, age, educational level, and health status. RESULTS: Data were available for 75 patients. Grades ranged from 6.74 for "discharge and after care" to 8.18 for "medical care". In all, 21% of patients were dissatisfied with the clarity of the information about lifestyle adjustments given by the surgeon. However, patients who had contact with a specialised nurse were more satisfied with the provided information (B-coefficient is 0.497, p-value is 0.038), independent of patient characteristics. CONCLUSIONS: Patients were satisfied with the received care, although there is room for improvement, especially in discharge and after care and the clarity of the information provided by the surgeon. This gap in care can be compensated for by specialised nurses, as patients who were counselled by a specialised nurse were more satisfied with the provided information.

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.

The association between parental chronic physical illness and adolescent functional somatic symptoms.

BACKGROUND: Previous studies have found that adolescents with a chronically ill parent may experience more internalizing problems. It is less clear if this association is sex-related, and whether it is specific for functional somatic symptoms (FSSs) or concerns other internalizing or externalizing problems. METHODS: In a prospective cohort of adolescents, oversampled on emotional and behavioral problems (n = 841; mean age 14.9 years), we examined the association between parental chronic illness and adolescent's FSSs, and internalizing and externalizing problems. Adolescent's internalizing and externalizing symptoms were measured using the Youth Self Report; parental chronic physical illness was reported during an interview. Associations were tested using linear regression analyses taking into account socio-demographic confounders. We also explored gender-interaction effects. RESULTS: Having a chronically ill parent (n = 120; 14.3 %) was associated with more FSS in girls (B = 1.05, 95%CI = [0.23, 1.88], p = .013), but not in boys (sex-interaction: p = .013). In girls, an association was also found between parental chronic illness and more internalizing problems (B = 2.68, 95%CI = [0.41, 4.95], p = .021), but this association disappeared when FSSs were excluded from the Internalizing problem scores. LIMITATIONS: The current study has a cross-sectional design and relied on self-reported parental chronic physical illness what may have induced misclassification. CONCLUSION: Findings suggest that having a chronically ill parent is associated with more FSSs in adolescent girls and that this association is specific for FSSs instead of general internalizing problems. Girls with a chronically ill parent may profit from interventions to prevent the development of FSSs.

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.

New York Heart Association class assessment by cardiologists and outpatients with congenital cardiac disease: a head-to-head comparison of three patient-based versions.

BACKGROUND: The objective of this study was to compare three patient-based New York Heart Association assessments with cardiologist assessments in outpatients with congenital cardiac disease. METHODS: Consecutive adult outpatients completed three questionnaires in a random order: a patient-based translation of the New York Heart Association classes, a self-constructed questionnaire based on the New York Heart Association classes, and the Specific Activity Scale. The treating cardiologist assessed the New York Heart Association class on the same day. Patient-cardiologist agreement was assessed by calculating percent agreement and weighted kappa. We also explored the level of agreement for patients without co-morbidity. RESULTS: In all, 86 adults--with a median age of 35.8 years--including 46 women participated. An agreement of 75.6% (weighted kappa is 0.43; probability is smaller than 0.01), 70.6% (weighted kappa is 0.44; probability is smaller than 0.01), and 74.4% (weighted kappa is 0.28; probability is smaller than 0.01) was found between the cardiologist assessment and the patient-based translation, self-constructed questionnaire, and the Specific Activity Scale, respectively. The patient-based translation equally over- and underestimated the New York Heart Association class, whereas the self-constructed questionnaire overestimated and the Specific Activity Scale underestimated the New York Heart Association class. Agreement levels for patients without co-morbidity were higher than agreement levels for the total group. CONCLUSION: The patient-based translation yielded adequate agreement with cardiologist-assessed New York Heart Association class, showed equal over- and underestimation, and was easy to complete. The patient-based translation with the instruction to only consider functional impairments caused by the congenital cardiac defect is recommended in future studies of outpatients with congenital cardiac disease.

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.