Living with dialysis : patients' perceptions and outcomes

Patients__ perceptions can influence their responses to end-stage renal disease (ESRD) and dialysis, and subsequent health outcomes such as health-related quality of life (HRQL) and survival. This thesis explores the association between illness perceptions and health outcomes of patients on dialysis. For example, we found a single self-rated health (SRH) item: __How would you say your health is in general__ to be a strong predictor of mortality. Patients who perceive their health as poor, fair or good had a higher mortality risk than those with excellent/very good health, independent of a range of risk factors. Compared with haemodialysis (HD) patients, peritoneal dialysis (PD) patients reported more personal control and had a better understanding of the illness. Patients who perceived having more symptoms, more consequences and lower personal control reported poorer HRQL. In terms of social support, both HD and PD patients who perceived a discrepancy between the received and expected levels of social companionship, daily emotional support, and total support had a higher risk of mortality. However, patients who received or perceived having inadequate emotional support with problems had no higher mortality risks. Therefore, different aspects of social support is of varying importance to dialysis patients.UBL - phd migration 201

Illness perceptions are associated with mortality among 1552 colorectal cancer survivors:A study from the population-based PROFILES registry

Purpose Cancer survivors construct perceptions of illness as a (mal)adaptive mechanism. These perceptions motivate/drive subsequent self-management behaviors toward symptoms and treatment that influence health outcomes. Negative illness perceptions have been associated with increased mortality in other chronically ill groups. However, this association is under-researched in cancer survivors. We aimed to explore the association between illness perceptions and mortality in stage I–III progression-free colorectal cancer (CRC) survivors. Methods We used data from the population-based Patient Reported Outcomes Following Initial treatment and Long Term Evaluation of Survivorship (PROFILES) registry of two CRC survivorship studies conducted in 2009 and 2010. We accessed clinical data from the Netherlands Cancer Registry, and mortality data from municipal personal records database. Follow-up was until 31 December 2014. Survivors (n = 1552) completed the Brief Illness Perception Questionnaire. Cox proportional hazard models estimated the association between illness perceptions and mortality. Results Negative illness perceptions on consequences (adjusted hazard ratio (HRadj) 1.60, 95 % confidence interval (CI) 1.14–2.25) and emotion (HRadj 1.65, 95 % CI 1.18–2.31) were associated with higher mortality, after adjusting for demographic, clinical, and lifestyle factors. Smoking and inadequate physical activity were independently associated with mortality for all Brief Illness Perception Questionnaire (BIPQ) dimensions. Conclusions Survivors’ perceptions of their illness are important as these perceptions may influence health outcomes during survivorship period. Clinical practice needs to identify and address maladaptive illness perceptions to support more adaptive self-management behaviors and enhance survivorship. Implications for cancer survivors Cancer survivors may benefit from interventions that address potentially maladaptive perceptions and encourage more adaptive self-management behaviors

Illness perceptions in women with breast cancer:A systematic literature review

Women with breast cancer respond to the illness and its medical management in their own personal way. Their coping behavior and self-management are determined by their views (cognitions) and feelings (emotions) about symptoms and illness: their illness perceptions. This paper reports the results of a systematic literature review of illness perceptions and breast cancer. In the 12 studies identified, published between 2012 and 2015, illness perceptions were found to be important concomitants of medical and behavioral outcomes: fear of recurrence, distress, quality of life, satisfaction with medical care, use of traditional healers, and risk perceptio

Quantifying fatigue in (long-term) colorectal cancer survivors:A study from the population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry

AbstractBackgroundFew studies specifically focus on fatigue of (long-term) colorectal cancer (CRC) survivors or compare fatigue levels with a normative population. Association between surviving multiple primary cancers and fatigue is also explored.MethodsSurvivors diagnosed from 1998 to 2009 were identified from the Eindhoven Cancer Registry. In total, 3739 (79%) respondents and an age- and gender-matched normative population (n=338) completed questionnaires on fatigue and psychological distress.ResultsMore survivors reported feeling fatigued than the normative population (39% versus 22%, p<0.0001). Short-term survivors (<5 years post-diagnosis) had the highest mean fatigue scores compared with long-term survivors (⩾5 years post-diagnosis) or the normative population (21±7 versus 20±7 versus 18±5, p<0.0001, respectively). Having primary cancers prior to CRC was associated with more fatigue. Surgery+chemoradiation was independently associated with fatigue (odds ratio (OR): 1.63, 95% confidence interval (CI): 1.17–2.29, p=0.004) as were anxiety (OR: 1.16, 95% CI: 1.12–1.19, p<0.0001) and depressive symptoms (OR: 1.38, 95% CI: 1.33–1.43, p<0.0001).ConclusionsFatigue is a significant problem, especially for short-term CRC survivors. The association between chemoradiation and fatigue suggests that patients could benefit from better information on treatment side-effects. When treating fatigue, clinical care should also focus on survivors’ psychological needs, especially survivors of multiple primary cancers

Prospectively measured lifestyle factors and BMI explain differences in health-related quality of life between colorectal cancer patients with and without comorbid diabetes

Purpose This study aimed to assess the longitudinal association between lifestyle factors, body mass index (BMI), and health-related quality of life (HRQoL) among colorectal cancer patients with (CRCDM+) and without diabetes (CRCDM−). Methods Data from a longitudinal study among CRC patients diagnosed between 2000 and 2009 were used. Clinical characteristics were retrieved from the Netherlands Cancer Registry and questionnaires were sent in 2010, 2011, and 2012 using the Patient Reported Outcomes Following Initial Treatment and Long term Evaluation of Survivorship (PROFILES) registry. Lifestyle (including moderate-to-vigorous physical activity (MVPA), smoking and alcohol use), BMI, diabetes status, and HRQoL were assessed in the questionnaire. Results One thousand seven hundred thirty-nine (49 %) patients responded to ≥2 questionnaires, of whom 126 CRCDM+ and 789 CRCDM− patients were included. CRCDM+ patients had a higher BMI (29.1 ± 4.2 vs. 26.4 ± 3.7 kg/m2), whereas the number of alcohol users was lower (50 vs. 70 %, p value <0.0001) among CRCDM+ as compared to CRCDM− patients. Analyses adjusted for sociodemographic and cancer characteristics showed that CRCDM+ patients reported statistically significantly lower physical function (beta = -5.76; SE = 1.67), global QoL (beta = -4.31; SE = 1.48), and more symptoms of fatigue (beta = 5.38; SE = 1.95) than CRCDM− patients. However, these effects disappeared after adjustments for lifestyle factors and BMI which were all significant predictors of HRQoL. Additional adjustment for comorbidity further attenuated the main effect of DM on HRQoL. Conclusions Diabetes was not independently associated with HRQoL but deteriorated HRQoL among CRCDM+ patients seem to be explained by an unhealthier lifestyle and other comorbid conditions. Moreover, residual confounding cannot be ruled out.KeywordsColorectal cancer, Diabetes, Lifestyle, Health-related quality of lif

Quality of life of older rectal cancer patients is not impaired by a permanent stoma

AbstractBackgroundThe current study was undertaken to investigate the impact of a stoma on the HRQL with a special focus on age.Materials and methodsUsing the Eindhoven Cancer Registry, rectal cancer patients diagnosed between 1998 and 2007 in 4 hospitals were identified. All patients underwent TME surgery. Survivors were approached to complete the SF-36 and EORTC QLQ-C38 questionnaires. HRQL scores of the four groups, stratified by stoma status (stoma/no stoma) and age at operation (<70 and ≥70), were compared. The SF-36 and the QLQ-CR38 sexuality subscale scores of the survivors were compared with an age- and sex-matched Dutch norm population.ResultsMedian follow-up of 143 patients was 3.4 years. Elderly had significantly worse physical function (p = 0.0003) compared to younger patients. Elderly (p = 0.005) and patients without a stoma (p = 0.009) had worse sexual functioning compared to younger patients and patients with a stoma. Older males showed more sexual dysfunction (p = 0.01) when compared to younger males. In comparison with the normative population, elderly with a stoma had worse physical function (p < 0.01), but slightly better mental health (p < 0.05). Elderly without a stoma had better emotional role function (p < 0.01), and younger patients had worse sexual functioning and enjoyment (both p < 0.0001).ConclusionsOlder patients with a stoma have comparable HRQL to older patients without a stoma or the normative population, indicating the feasibility of a permanent stoma for elderly patients with a low situated rectal carcinoma. The negative impact of treatment on sexual functioning as found in the current study calls for further attention to alleviate this problem in sexually active patients

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

Purpose: Little 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. Methods: Respondents 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. Results: Three CRF classes were identified: class 1 (no fatigue and distress, n = 644, 56%), class 2 (low f