scholarly journals Quality of Life After Bladder Cancer: A Cross-sectional Survey of Patient-reported Outcomes

2021 ◽  
Vol 79 (5) ◽  
pp. 621-632 ◽  
Author(s):  
James W.F. Catto ◽  
Amy Downing ◽  
Samantha Mason ◽  
Penny Wright ◽  
Kate Absolom ◽  
...  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Miguel Ángel Amor-García ◽  
Sara Ibáñez-García ◽  
Xandra García-González ◽  
Teresa Mombiela ◽  
Cristina Villanueva-Bueno ◽  
...  

Abstract Background Patients with pulmonary hypertension (PH) have progressive and disabling symptoms, as well as a burden of treatments and a difficult clinical evaluation that make health-related quality of life a particularly relevant endpoint in this disease. The objective of the study was to evaluate patient-reported outcomes of patients receiving specific treatment for PH in a tertiary hospital using a specific questionnaire (Cambridge Pulmonary Hypertension Outcome Review-CAMPHOR) in the pharmacy consultation. Methods A cross-sectional, observational, descriptive study was conducted. It included all patients receiving specific treatment for PH in a tertiary hospital in Madrid, Spain. The inclusion period comprised between August to December 2019. CAMPHOR questionnaires containing three domains: symptoms, activities and quality of life were completed by the patients at the pharmacy consultation. Demographic and clinical variables, including WHO Functional Class (WHO FC), PH-specific tests and hemodynamic parameters, were recorded. Non-parametric analyses to assess relations between variables and CAMPHOR domains were performed. Results Thirty-six patients consented to participate in the study and completed the questionnaire. Median scores for symptoms, activities, and quality of life domains were 5.5 (2.5–10), 8.0 (4.5–10.5) and 3.5 (1–7.5), respectively. Statistically significant differences were found in the three domains when comparing by WHO FC, in the activities domain for 6-m walking test and in the quality of life domain for patients who had emergency visits or hospitalizations in the last year. Conclusions The CAMPHOR questionnaire could be useful as a complementary test to achieve an integrated evaluation of PH patients, who could complete it easily during their routine pharmacy visits.


Medicina ◽  
2020 ◽  
Vol 56 (1) ◽  
pp. 45 ◽  
Author(s):  
Rosellina Margherita Mancina ◽  
Raffaele Pagnotta ◽  
Caterina Pagliuso ◽  
Vincenzo Albi ◽  
Daniela Bruno ◽  
...  

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients’ quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients’ social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient’s daily life.


2020 ◽  
Vol 38 (6_suppl) ◽  
pp. 463-463
Author(s):  
Pauline Filippou ◽  
Sean McCabe ◽  
Hannah McCloskey ◽  
Kathryn Gessner ◽  
Judy Hamad ◽  
...  

463 Background: Quality of life among cancer survivors has been shown to vary by age. Our objective was to evaluate differences in general and bladder cancer-specific quality of life based on age among a large cross-sectional bladder cancer cohort. Methods: We performed a cross-sectional survey of bladder cancer patients using the Bladder Cancer Advocacy Network Patient Survey Network and Inspire platforms to determine general and bladder cancer-specific quality of life (QOL) using the EORTC QLQ-C30 and Bladder Cancer Index. Patients were also queried regarding demographic, socioeconomic and clinical characteristics. We present descriptive statistics and a multiple linear regression model to identify factors independently associated with QOL domain score. Results: 972 respondents self-identified as patients with bladder cancer, of whom 41% were female and 97 % were white. The mean age was 67.6 years (range 29 to 93 years). Respondents were highly educated (67% completed college). 63% of patients identified as having non-invasive (NMIBC) cancer (n=578), 30% had MIBC (n=270), and 7% had metastatic bladder cancer (n=63). On multivariable analysis, older age was significantly associated with better generic QOL and urinary function ( Table), but not sexual function (p=0.19) or bowel function (p=0.73), controlling for sex, race, stage, comorbidity and years since diagnosis. Conclusions: Higher general and domain-specific QOL scores are more common among older bladder cancer patients. Differential impact by age may be important for the development of tailored interventions to improve QOL for bladder cancer patients. [Table: see text]


2020 ◽  
Vol 38 (6_suppl) ◽  
pp. 466-466
Author(s):  
Hannah McCloskey ◽  
Sean McCabe ◽  
Kathryn Gessner ◽  
Pauline Filippou ◽  
Judy Hamad ◽  
...  

466 Background: Bladder cancer requires treatment and surveillance which varies in intensity by disease stage. Our objective was to evaluate stage-specific differences in generic and bladder cancer-specific quality of life (QOL) among a large bladder cancer cohort. Methods: We performed a cross-sectional survey of bladder cancer patients using the Bladder Cancer Advocacy Network Patient Survey Network and Inspire platforms to determine generic and bladder cancer-specific QOL using the EORTC QLQ-C30 and Bladder Cancer Index. Patients were also queried regarding demographic, socioeconomic and clinical characteristics. We present descriptive statistics and a multiple linear regression model to identify factors independently associated with QOL domain score. Results: 972 respondents self-identified as patients with bladder cancer. Among respondents, 41% were female and 97% were white. The mean age was 67.6 years (range 29 to 93 years). Patients identified as having non-muscle-invasive bladder cancer (NMIBC, n=578 [63%]), MIBC (n=270, 30%), and metastatic bladder cancer (n=63, 7%). On bivariable analysis ( Table), lower stage was significantly associated with better generic (p<0.01) and bladder-cancer specific QOL (p<0.01). This associated persisted on multivariable analysis adjusted for age, sex, race, years since diagnosis, and comorbidity (p<0.01 for generic, urinary, sexual, and bowel QOL). Conclusions: Disease stage significantly impacts generic and bladder cancer-specific QOL among bladder cancer survivors. Differential impact by stage may be important for the development of tailored interventions to improve QOL for bladder cancer patients. [Table: see text]


Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3608-3608
Author(s):  
Sonya Cressman ◽  
Mary Lynn Savoie ◽  
Stephen Couban ◽  
Emily McPherson ◽  
Alexa Evans ◽  
...  

Abstract Background There are limited patient reported outcomes for acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) due to relatively low incidence rates and disease severity. Patient reported outcomes on health utility, a measure of quality of life weighted to the preferences of the general population, are however required for economic evaluation of interventions to diagnose and treat the diseases. This study was designed to report health utility outcomes from patients during their treatment for AML and MDS, for the first time. We sought to use the infrastructure of a multicentre study to report these outcomes in an otherwise inaccessible patient population and enable more accurate economic models. Methods Following institutional research ethics board approval at six recruiting study centres across Canada, the Euroqol five dimensions (EQ5D) health utility instrument and socio-demographic questionnaires were administered by telephone or in person to eligible participants in a national clinical study (NCT01685619). These data were linked to the treatment outcomes and health state transitions of each participant during their treatment of AML or MDS. A longitudinal analysis of treatment effects and cross-sectional regression analyses were undertaken for data collected at four, quarterly time points over the first year following diagnosis, and two semi-annual points over the second year. We defined health utility for specific economic health states and the co-varying impacts from socio-demographic characteristics and treatment-related impacts. Results At least one quality of life questionnaire was returned for 131 (96%) of the eligible patients who participated in the study. Response rates were greater than 60% at each of the scheduled time points. The median overall survival (468 days; 95% CI: 353-660) was reached over the 24 month term of follow-up. The most preferred health states involved greater than 12 months of survival (health utility > 0.78); the least preferred health states were reported for failed treatments and an initial AML diagnosis (health utility < 0.63). There were no significant differences found among utility outcomes that could be related to consolidation modality or remission induction intent. AML patients with 24 months of survival gained 0.037 more quality adjusted life years (QALYs) than MDS patients with equivalent survival time. An ordinary least squares regression model on the cross-sectional data suggests that having an MDS diagnosis was associated with a better short-term health utility while long term outcomes were greater for patients who survived 24 months after being diagnosed with AML (p<0.1). Conclusions This report on health utility outcomes was made possible only by collaboration with health economists and the infrastructure of a multicentre clinical study. The data suggest that survivors following 24 months of treatment for AML gained more QALYs than the survivors of MDS. The findings warrant further investigation due to the suggestion of equivalent health utility between treatments and to further validate the use of the EQ5D instrument in this disease area. Disclosures Savoie: Jazz: Consultancy; Lundbeck: Consultancy; Amgen: Consultancy; BMS: Consultancy, Honoraria; Novartis: Consultancy, Honoraria; Pfizer: Consultancy; Celgene: Consultancy.


2021 ◽  
Author(s):  
Xiaohan Liu ◽  
YaShuang Bai ◽  
Ning Huang ◽  
JING GUO

Abstract Background:The quality of life might have been decreased owing to the social disruptionsin daily life and basic functioning afterCoronavirus Disease (COVID-19) pandemic. This study aims to examine the relationship between job changes, family conflicts, and quality of life among parents during COVID-19 in China.Methods:We recruited 1209 adultsthrough an online cross-sectional survey in China during the COVID-19 lockdown from April 21st to April 28th, 2020.Convenient and cluster sampling methods were used to recruit parents. The global health items in the Patient-Reported Outcomes Measurement Information System (PROMIS) were used as a measurement forquality of life. Data were mainly analyzed by multiple linear regression with SPSS.Results:Both marital conflict (β=-0.243, P<.001) and parent-child conflict (β=-0.119, P=.001)were negatively associated with the quality of life among parents during the lockdown.While job changes moderatedthe relationship of marital conflict and quality of life(β=-0.256, P=.022). Besides, the interaction effects of job changesand family conflict on quality of life only significantly amongfathers andone child families.Conclusion:This study indicated the familyconflictwas acrucialfactorcorrelatedwithqualityoflifeamongyoungparents in the backdrop of COVID-19 lockdown. Job changes could interact with marital conflict and parent-child conflict on quality of life.


2020 ◽  
Vol 38 (6_suppl) ◽  
pp. 464-464
Author(s):  
Kathryn Gessner ◽  
Sean McCabe ◽  
Pauline Filippou ◽  
Hannah McCloskey ◽  
Judy Hamad ◽  
...  

464 Background: Quality of life among cancer survivors has been shown to vary by gender. Our objective was to evaluate differences in generic and bladder cancer-specific quality of life (QOL) based on gender among a large bladder cancer cohort. Methods: We performed a cross-sectional survey of bladder cancer patients using the Bladder Cancer Advocacy Network Patient Survey Network and Inspire platforms to determine generic and bladder cancer-specific QOL using the EORTC QLQ-C30 and Bladder Cancer Index. Patients were also queried regarding demographic, socioeconomic and clinical characteristics. The survey was advertised. We present descriptive statistics and a multiple linear regression model to identify factors independently associated with QOL domain score. Results: 972 respondents self-identified as patients with bladder cancer. Among respondents, 41% were female and 97% were white. The mean age was 67.6 years (range 29 to 93 years). Respondents were highly educated (67% completed college). 63% of patients identified as having non-invasive (NMIBC) cancer (n=578), 30% had MIBC (n=270), and 7% had metastatic bladder cancer (n=63). On multivariable analysis ( Table), female gender was significantly associated with worse generic QOL (p<0.001), bowel function (p=0.001), and sexual function (p=0.02), and women trended toward worse urinary function (p=0.06), controlling for age, race, stage, comorbidity and years since diagnosis. Conclusions: Lower generic and domain-specific QOL scores are more common among female bladder cancer patients. Differential impact by gender may be important for the development of tailored interventions to improve QOL for bladder cancer patients. [Table: see text]


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