Validation and reliability of the Dutch version of the EORTC QLQ-BLM30 module for assessing the health-related quality of life of patients with muscle invasive bladder cancer

Background: Quality of Life (QoL) of bladder cancer patients has been largely neglected. This is partly due to the lack of well-validated QoL questionnaires. The aim of this study is to examine the structural validity, reliability (i.e., internal consistency and test-retest reliability), construct validity (i.e., divergent validity and known group validity) and responsiveness of the Dutch version of the European Organisation for Research and Treatment of Cancer QoL questionnaire for muscle invasive bladder cancer (EORTC-QLQ-BLM30). Methods: Patients with newly diagnosed muscle invasive bladder cancer (MIBC) participating in the population-based ‘Blaaskankerzorg In Beeld’ (BlaZIB) study who completed the EORTC-QLQ-BLM30 at baseline were included. BlaZIB is a Dutch nationwide population-based prospective cohort study collecting clinical data and QoL data of bladder cancer patients. QoL is assessed with a self-administered questionnaire at four points in time: 6 weeks (baseline), 6 months, 12 months and 24 months after diagnosis. Confirmatory factor analysis and multitrait scaling analysis were used to investigate and adapt the scale structure. Reliability, construct validity and responsiveness of the revised scales were evaluated. Results: Of the 1542 patients invited to participate, 650 patients (42.2%) completed the QLQ-BLM30 at baseline. The questionnaire’s scale structure was revised into seven scales and eight single items. Internal consistency and test-reliability were adequate for most scales (Cronbach’s α ≥0.70 and intraclass correlation coefficient ≥ 0.70, respectively), with the exception of the revised urostomy problem scale and abdominal bloating and flatulence scale. The questionnaire exhibited little overlap with the EORTC-QLQ-C30: all correlations were &lt; 0.40, except for the correlation between emotional function (QLQ-C30) and future worries (QLQ-BLM30). The questionnaire was able to distinguish between patient subgroups formed on the basis of physical function, but not – as hypothesized– based on stage. Changes in health due to treatment were captured by the questionnaire, indicating that the questionnaire is responsive to change. Conclusions: This study shows that the adapted scale structure of the EORTC-QLQ-BLM30 generally exhibits good measurement properties in Dutch patients, but needs to be validated in other languages and settings. Trial registration: BlaZIB, NL8106, www.trialregister.nl.</p

Validation and reliability of the Dutch version of the EORTC QLQ-BLM30 module for assessing the health-related quality of life of patients with muscle invasive bladder cancer

Background: Quality of Life (QoL) of bladder cancer patients has been largely neglected. This is partly due to the lack of well-validated QoL questionnaires. The aim of this study is to examine the structural validity, reliability (i.e., internal consistency and test-retest reliability), construct validity (i.e., divergent validity and known group validity) and responsiveness of the Dutch version of the European Organisation for Research and Treatment of Cancer QoL questionnaire for muscle invasive bladder cancer (EORTC-QLQ-BLM30). Methods: Patients with newly diagnosed muscle invasive bladder cancer (MIBC) participating in the population-based ‘Blaaskankerzorg In Beeld’ (BlaZIB) study who completed the EORTC-QLQ-BLM30 at baseline were included. BlaZIB is a Dutch nationwide population-based prospective cohort study collecting clinical data and QoL data of bladder cancer patients. QoL is assessed with a self-administered questionnaire at four points in time: 6 weeks (baseline), 6 months, 12 months and 24 months after diagnosis. Confirmatory factor analysis and multitrait scaling analysis were used to investigate and adapt the scale structure. Reliability, construct validity and responsiveness of the revised scales were evaluated. Results: Of the 1542 patients invited to participate, 650 patients (42.2%) completed the QLQ-BLM30 at baseline. The questionnaire’s scale structure was revised into seven scales and eight single items. Internal consistency and test-reliability were adequate for most scales (Cronbach’s α ≥0.70 and intraclass correlation coefficient ≥ 0.70, respectively), with the exception of the revised urostomy problem scale and abdominal bloating and flatulence scale. The questionnaire exhibited little overlap with the EORTC-QLQ-C30: all correlations were &lt; 0.40, except for the correlation between emotional function (QLQ-C30) and future worries (QLQ-BLM30). The questionnaire was able to distinguish between patient subgroups formed on the basis of physical function, but not – as hypothesized– based on stage. Changes in health due to treatment were captured by the questionnaire, indicating that the questionnaire is responsive to change. Conclusions: This study shows that the adapted scale structure of the EORTC-QLQ-BLM30 generally exhibits good measurement properties in Dutch patients, but needs to be validated in other languages and settings. Trial registration: BlaZIB, NL8106, www.trialregister.nl.</p

Supportive interventions to improve physiological and psychological health outcomes among patients undergoing cystectomy: A systematic review

Background Our understanding of effective perioperative supportive interventions for patients undergoing cystectomy procedures and how these may affect short and long-term health outcomes is limited. Methods Randomised controlled trials involving any non-surgical, perioperative interventions designed to support or improve the patient experience for patients undergoing cystectomy procedures were reviewed. Comparison groups included those exposed to usual clinical care or standard procedure. Studies were excluded if they involved surgical procedure only, involved bowel preparation only or involved an alternative therapy such as aromatherapy. Any short and long-term outcomes reflecting the patient experience or related urological health outcomes were considered. Results 19 articles (representing 15 individual studies) were included for review. Heterogeneity in interventions and outcomes across studies meant meta-analyses were not possible. Participants were all patients with bladder cancer and interventions were delivered over different stages of the perioperative period. The overall quality of evidence and reporting was low and outcomes were predominantly measured in the short-term. However, the findings show potential for exercise therapy, pharmaceuticals, ERAS protocols, psychological/educational programmes, chewing gum and nutrition to benefit a broad range of physiological and psychological health outcomes. Conclusions Supportive interventions to date have taken many different forms with a range of potentially meaningful physiological and psychological health outcomes for cystectomy patients. Questions remain as to what magnitude of short-term health improvements would lead to clinically relevant changes in the overall patient experience of surgery and long-term recovery

The Use of Theory to Develop Physical Activity Interventions in Urological Cancer Survivors: A Narrative Review

Objectives To summarize the current available evidence on the use of behavior change theories to explain and change physical activity behavior in urological cancer survivors. Data Sources Five electronic databases including Medline, Web of Science, Embase, Cochrane, and Psych INFO and reference lists of key studies were searched between database inception and November 2020. Peer-reviewed articles on the use of behavior change theories to understand or change physical activity in urological cancer survivors were included. Conclusion The theory of planned behavior and the social cognitive theory were the most used theories to explain and change physical activity behavior in urological cancers, respectively. However, the use of behavior change theories in physical activity interventions for urological cancers is still low across all urological tumor groups. Planning frameworks such as the intervention mapping approach should be used to enhance the systematic use of behavior change theories during every phase of intervention development. In addition, more research is needed to identity which behavior change techniques are most effective to change physical activity behavior in urological cancer survivors. Implications for Nursing Practice Nurses play a key role in the urological cancer patients’ clinical pathway and should be able to motivate patients to engage in sufficient physical activity levels. Therefore, it is important that nurses understand the underlying reasons why patients (do not) engage in physical activity and which behavior change techniques are most effective in changing a patients’ behavior

Living with a chronic disease: insights from patients with a low socioeconomic status

Background Little is known about how patients with low socioeconomic status (SES) experience their chronic disease, and how it impacts health-related quality of life (HRQoL). Compared to their more affluent counterparts, worse outcomes have been reported. A better understanding of the domains of HRQoL that are relevant to these specific populations is therefore needed. We explored the experiences of living with a chronic disease in low SES&nbsp;persons. Methods A qualitative interview study was performed in Flanders, Belgium. Semi-structured interviews were conducted in chronically ill patients, selected through purposive sampling. Interviews were audio-recorded and transcribed verbatim. Analysis followed an inductive and iterative&nbsp;approach. Results Fifteen patients were interviewed. Six major themes were identified: a heavy bag to carry, loss of autonomous life, inner and outer loneliness, emotional imbalance, unmet need for support, and coping strategies. Patients experienced their illness as an additional problem on top of all other problems (i.e. financial/social problems, traumatic life events). In general, the disease burden and non-disease burden were mutually reinforcing, resulting in greater dependency, greater risk of social isolation, greater psychological distress, and greater risk of impaired HRQoL. Conclusions This study is the first to provide detailed insight into the experiences of living with a chronic disease in low SES persons. A conceptual model is proposed that can be used in daily clinical practice to raise awareness among clinicians and health care providers that the patient’s needs go beyond the disease itself. Future research is needed to validate and test the&nbsp;model.</p

Associations of self-efficacy, social support and coping strategies with health-related quality of life after radical cystectomy for bladder cancer: A cross-sectional study

Objectives Investigating associations between self-efficacy, social support and quality of life (HRQoL) and mediating effects of coping among bladder cancer (BC) patients treated with radical cystectomy (RC). Methods A cross-sectional study was conducted from January 2012 to December 2014 with 99 BC patients. An online survey assessed patient characteristics, HRQoL, coping strategies, self-efficacy and social support. A stepwise multiple linear regression model was used. Results Self-efficacy and social support were significantly associated with HRQoL. Complete mediation effects of adaptive/maladaptive coping strategies emerged for the associations between self-efficacy and social support with functional well-being (B = 0.247, 95% CI 0.119-0.374, p < 0.001; B = -0.414, 95% CI -0.526 to -0.302, p < 0.001) and total Functional Assessment of Cancer Therapy-Bladder (FACT-BI) (B = 0.779, 95% CI 0.351-1.207, p < 0.001; B = -1.969, 95% CI -2.344 to -1.594, p < 0.001). Maladaptive coping mediated the associations of self-efficacy and social support with physical well-being (B = -0.667, 95% CI -0.752 to -0.516, p < 0.001) and disease-specific symptoms (B = -0.413, 95% CI -0.521 to -0.304, p < 0.001). A partial mediation effect of adaptive coping was found for the association between self-efficacy and social well-being (B = 0.145, 95% CI 0.016-0.273, p < 0.05). Social support was significantly associated with emotional (B = 0.067, 95% CI 0.027-0.108, p < 0.001) and social well-being (B = 0.200, 95% CI 0.146-0.255, p < 0.001). Conclusion Interventions should tackle self-efficacy, social support and coping strategies to improve BC patients' HRQoL