Health-related quality of life after a diagnosis of bladder cancer: a longitudinal survey over the first year.

OBJECTIVES: To describe the health-related quality of life (HRQoL) of patients in a prospective 12-month observational cohort study of new bladder cancer diagnoses and compare with national cancer and general population surveys. PATIENTS AND METHODS: A prospective UK study in patients with new bladder cancer diagnoses at 13 NHS Trusts. The HRQoL data were collected at 3, 6, 9 and 12 months. Questionnaires used included: the EuroQoL five Dimensions (EQ-5D), European Organisation for Research and Treatment of Cancer quality of life questionnaire (EORTC QLQ)-30-item core, EORTC QLQ-24-item non-muscle-invasive bladder cancer, and EORTC QLQ-30-item muscle-invasive bladder cancer. Results were compared with the Cancer Quality of Life Survey and Health Survey for England. RESULTS: A total of 349 patients were recruited, 296 (85%) completed the first (baseline) and 233 (67%) the final survey. The patients underwent transurethral resection of bladder tumour (TURBT) ± intravesical therapy (238 patients, 80%), radical cystectomy/radiotherapy (51, 17%) or palliation (seven, 2%). At baseline, patients needing radical treatment reported worse HRQoL including lower social function (74.2 vs 83.8, P = 0.002), increased fatigue (31.5 vs 26.1, P = 0.03) and more future worries (39.2 vs 29.4, P = 0.005) than patients who underwent TURBT. Post-treatment surveys showed no change/improvements for patients who underwent TURBT but deterioration for the radically treated cohort. At final survey, reports were similar to baseline, regardless of treatment. Radically treated patients continued to report poorer HRQoL including issues with body image (23.4 vs 12.5, P = 0.007) and male sexual function (75.8 vs 40.4, P < 0.001) compared to those who underwent TURBT. Radically treated patients reported lower EQ-5D utility scores and more problems with usual activities than the general population. DISCUSSION: Patients undergoing TURBT can be reassured regarding HRQoL following treatment. However, those requiring radical treatment report greater changes in HRQoL with the need for appropriate clinical and supportive care to minimise the impact of treatments.

Lifestyle Factors in Patients with Bladder Cancer: A Contemporary Picture of Tobacco Smoking, Electronic Cigarette Use, Body Mass Index, and Levels of Physical Activity.

BACKGROUND: Little is known about contemporary lifestyle choices in patients with bladder cancer (BC). These choices include carcinogenic risk factors and could affect fitness to receive treatments. OBJECTIVE: To evaluate the contemporary lifestyle choices in BC patients. DESIGN, SETTING, AND PARTICIPANTS: Self-reported surveys from participants diagnosed with BC in the previous 10 yr captured smoking patterns, e-cigarette use, physical activity using the GODIN Leisure-Time Exercise Questionnaire, long-term conditions (LTCs), relationship status, sociodemographics, and body mass index (BMI; height and weight). OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Findings were compared with the general population and men with prostate cancer. RESULTS AND LIMITATIONS: Completed surveys were received from 2092 participants. Most respondents were ex-smokers (61% vs 10% current vs 29% never). The use of e-cigarettes was uncommon (9%) and at lower rates than the age-equivalent general population. Passive smoke exposure was frequent (48%). Most participants (68%) were "insufficiently active" using the GODIN criteria and less physically active than the age-equivalent general population. Most respondents (44%) were classified as overweight (BMI 25-29.99) or obese (22%, BMI >30). Lifestyle factors varied with age, sex, socioeconomic deprivation, and LTCs. Younger participants were less likely to smoke (p < 0.001), more likely to have used e-cigarettes (p < 0.001), but more likely to have had passive smoke exposure (p = 0.008). Those from less affluent areas were more likely to smoke (p < 0.001), have used e-cigarettes (p < 0.001), and have had passive smoke exposure (p = 0.02). Females were less likely to be smokers (p < 0.001) but more likely to have been exposed to passive smoke (p < 0.001). CONCLUSIONS: Persons affected by BC often have smoking exposures and high BMI, and are insufficiently active. Rates of e-cigarette use were lower than in the general population. Efforts to improve quality of life in this cohort should include wider advocation of smoking cessation, perhaps including the use of e-cigarettes, and programmes to increase exercise and reduce BMI. PATIENT SUMMARY: We looked at the lifestyle choices, such as smoking, e-cigarette use, physical activity levels, and obesity, of patients following a bladder cancer diagnosis. We conclude that this population would benefit from healthy lifestyle interventions.

Childhood Abuse and Neglect, Exposure to Domestic Violence and Sibling Violence: Profiles and Associations With Sociodemographic Variables and Mental Health Indicators.

Research indicates substantial overlap between child abuse and neglect (CAN), exposure to domestic violence and sibling abuse, with multiple victimisation experiences conferring greater risk for adverse mental health outcomes than does exposure to a single subtype. The application of latent class analysis (LCA) to child maltreatment has gained momentum, but it remains the case that few studies have incorporated a comprehensive range of subtypes, meaning that real-life patterns in victimisation experiences cannot be accurately modelled. Based on self-report data from an ethnically diverse sample (N = 2813) of 10-17 year olds in the United Kingdom, the current study used LCA to model constellations among nine types of maltreatment in the home (physical, emotional and sexual abuse; physical and emotional neglect; exposure to physical and verbal domestic violence, or a drug-related threat; and sibling violence). A four-class solution comprising of a low victimisation class (59.3% of participants), an emotional abuse and neglect class (19.0%), a high verbal domestic violence class (10.5%) and a maltreatment and domestic violence class (11.2%) provided the best fit for the data. Associations with sociodemographic variables were examined, revealing differences in the composition of the classes. Compared to the low victimisation class, participants in the verbal domestic violence class, emotional abuse and neglect class and especially the maltreatment and domestic violence class, reported higher symptoms of anxiety and depression and an increased likelihood of non-suicidal self-injury, suicide ideation and suicide attempt. The findings carry important implications for understanding patterns of child maltreatment, and the implications for preventative strategies and support services are discussed.

Stability of health-related quality of life and morbidity burden from 18 months after diagnosis of prostate cancer: results of a UK-wide population-based outcome cohort.

OBJECTIVE: To evaluate the dynamic nature of self-reported health-related quality of life (HRQL) and morbidity burden in men diagnosed with prostate cancer, we performed a follow-up study of the Life After Prostate Cancer Diagnosis (LAPCD) study cohort 12 months after initial survey. METHODS: The LAPCD study collected information from 35,823 men across the UK who were 18-42 months post-diagnosis of prostate cancer. Men who were still alive 12 months later were resurveyed. Generic HRQL (EQ-5D-5L plus self-assessed health rating) and prostate cancer-specific outcomes (EPIC-26) were assessed. Treatment(s) received was self-reported. Previously defined clinically meaningful differences were used to evaluate changes in outcomes over time. RESULTS: A total of 28,450 men across all disease stages completed follow-up surveys (85.8% response). Of the 21,700 included in this study, 89.7% reported no additional treatments since the first survey. This group experienced stable urinary and bowel outcomes, with good function for most men at both time points. On-going poor (but stable) urinary issues were associated with previous surgery. Sexual function scores remained low (mean: 26.8/100). Self-assessed health ratings were stable over time. The largest declines in HRQL and functional outcomes were experienced by men reporting their first active treatment between surveys. DISCUSSION: The results suggest stability of HRQL and most specific morbidities by 18-42 months for men who report no further treatment in the subsequent 12 months. This is reassuring for those with good function and HRQL but re-enforces the need for early intervention and support for men who experience poor outcomes.

Profiles of abuse and neglect and the association with mental health indicators among a large sample of boys and girls from India.

BACKGROUND: Child abuse and neglect (CAN) is a major public health concern, but limited data are available on the occurrence, co-occurrence, and correlates of these phenomena outside Western societies. OBJECTIVES: The first aim of this study was to establish the prevalence of CAN across two settings (inside and outside the home) among children and adolescents in Mumbai, India. Another aim was to use latent class analysis (LCA) to identify meaningful profiles of maltreatment, and to examine how class membership is associated with mental wellbeing. PARTICIPANTS AND SETTING: Self-report data was collected from males (n = 4454; Mage = 12.77 years) and females (n = 3850; Mage = 12.87) at secondary schools. RESULTS: Four latent classes of maltreatment were identified among males, including 'low victimisation' (50.4% of participants), 'intra-familial non-sexual abuse' (34.6%), 'intra- and extra- familial non-sexual abuse' (10.2%), and 'poly-victimisation' (4.8%). Among females, three latent classes were identified including, 'low victimisation' (68.1%), 'intra-familial non-sexual abuse' (28.8%), and 'poly-victimisation' (3.0%). Compared to the 'low victimisation' class, children in the abuse classes demonstrated higher levels of anxiety and depression and increased odds of self-injurious thoughts and behaviours. These associations were augmented for girls relative to boys. CONCLUSION: There were very few maltreated children who were subjected to just one form of CAN and experiencing co-occurring patterns of abuse and neglect was associated with indicators of poor mental health, especially among girls. These findings highlight the complexity of the situation and will inform policy makers, health professionals and school counsellors.

Prevalence and correlates of non-suicidal self-injury, suicidal ideation, and suicide attempt among children and adolescents: Findings from Uganda and Jamaica.

BACKGROUND: Youth non-suicidal self-injury (NSSI) and suicide are major public health concerns, but limited data are available on the prevalence and correlates of these problems in developing countries. The aim of this study is to describe experiences of three suicidal phenomena (NSSI, suicidal ideation [SI], and suicide attempt [SA]) among children and adolescents from two developing countries. We also examine how depression, anxiety, sleep problems, child maltreatment, and other socio-demographic variables associate with the risk of NSSI only, SI only, SA only, and co-occurring NSSI/SI/SA. METHODS: We conducted a population-based cross-sectional study of school-based Ugandan and Jamaican children and adolescents. Participants were 11,518 (52.4% female) Ugandan and 7,182 (60.8% female) Jamaican youths aged 9-17 years. RESULTS: The estimated lifetime prevalence of NSSI, SI, and SA was 25.5%, 25.6%, and 12.8% respectively among Ugandan boys and 23.2%, 32.5%, and 15.3% respectively among Ugandan girls. As for the Jamaican sample, the estimated lifetime prevalence of NSSI, SI, and SA was 21%, 27.7%, and 11.9% respectively among boys and 32.6%, 48.6%, and 24.7% respectively among girls. The odds of experiencing SI only, SA only, and co-occurring NSSI/SI/SA were significantly elevated among participants with mild, moderate, and severe depression in both countries. LIMITATIONS: The current study relied on retrospective data. CONCLUSIONS: This study found that suicidal phenomena are common among youths from Uganda and Jamaica, with rates substantially higher than among youths from high-income countries. The risk of suicidal phenomena was especially high among youths with severe depression.

Life and bladder cancer: protocol for a longitudinal and cross-sectional patient-reported outcomes study of Yorkshire (UK) patients.

INTRODUCTION: Little is known about the impact of bladder cancer (BC) and its treatments on health-related quality of life (HRQL). To date, most work has been small in scale or restricted to subsets of patients. Life and bladder cancer is a cross-sectional and longitudinal study collecting patient-reported outcomes within two distinct cohorts. METHODS AND ANALYSIS: A longitudinal study will collect patient-reported outcomes at 3-monthly intervals from newly diagnosed patients. Eligible cases will be identified by recruiting hospitals and surveyed at baseline, 6, 9 and 12 months postdiagnosis to explore changes in outcomes over time. A separate cross-sectional cohort of patients diagnosed within the last 10 years across Yorkshire will be identified through cancer registration systems and surveyed once to explore longer-term HRQL in BC survivors. A comprehensive patient-reported outcome measure (PROM) has been developed using generic, cancer-specific and BC-specific instruments. The study will provide evidence about how useful these PROMs are in measuring BC patient HRQL. The outcome data will be linked with administrative health data (eg, treatment information from hospital data). ETHICS AND DISSEMINATION: The study has received the following approvals: Yorkshire and the Humber-South Yorkshire Research Ethics Committee (17/YH/0095), Health Research Authority Confidentiality Advisory Group (17/CAG/0054). Results will be made available to patients, funders, NHS Trusts, Clinical Commissioning Groups, Strategic Clinical Networks and other researchers.

Health-related quality of life after treatment for bladder cancer in England.

BACKGROUND: Little is known about quality of life after bladder cancer treatment. This common cancer is managed using treatments that can affect urinary, sexual and bowel function. METHODS: To understand quality of life and inform future care, the Department of Health (England) surveyed adults surviving bladder cancer 1-5 years after diagnosis. Questions related to disease status, co-existing conditions, generic health (EQ-5D), cancer-generic (Social Difficulties Inventory) and cancer-specific outcomes (Functional Assessment of Cancer Therapy-Bladder). RESULTS: In total, 673 (54%) patients responded; including 500 (74%) men and 539 (80%) with co-existing conditions. Most respondents received endoscopic treatment (60%), while 92 (14%) and 99 (15%) received radical cystectomy or radiotherapy, respectively. Questionnaire completion rates varied (51-97%). Treatment groups reported ≥1 problem using EQ-5D generic domains (59-74%). Usual activities was the most common concern. Urinary frequency was common after endoscopy (34-37%) and radiotherapy (44-50%). Certain populations were more likely to report generic, cancer-generic and cancer-specific problems; notably those with co-existing long-term conditions and those treated with radiotherapy. CONCLUSION: The study demonstrates the importance of assessing patient-reported outcomes in this population. There is a need for larger, more in-depth studies to fully understand the challenges patients with bladder cancer face.

Evaluating patient-reported outcome measures (PROMs) for bladder cancer: a systematic review using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist.

Patient-reported outcome measures (PROMs) are important tools used to understand patient-focused outcomes from care. Various PROMs have been developed for patients with bladder cancer (BC), although the disease's heterogeneity makes selection difficult. Accurate measurement of health-related quality of life (HRQL) can only be achieved if the PROM chosen is 'fit for purpose' (i.e. psychometrically sound). Systematic reviews of psychometric properties are useful for selecting the best PROM for a specific purpose. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) developed a checklist to improve the selection of health measurement instruments as part of a review process. Our aims were to undertake a systematic review, using the COSMIN criteria, to assess the quality of studies that report the psychometric properties of PROMs used with people with BC and determine the psychometric quality of these PROMs. An electronic search of seven databases including PubMed, MEDLINE and EMBASE (PROSPERO reference CRD42016051974) was undertaken to identify English language publications, published between January 1990 and September 2017 that evaluated psychometric properties of PROMs used in BC research. Two researchers independently screened abstracts and selected full-text papers. Studies were rated on methodological quality using the COSMIN checklist. Overall, 4663 records were screened and 23 studies, reporting outcomes in 3568 patients, were evaluated using the COSMIN checklist. Most PROMs had limited information reported about their psychometric properties. Studies reporting on the Bladder Cancer Index (BCI) and Functional Assessment of Cancer Therapy Vanderbilt Cystectomy Index (FACT-VCI) provided the most detail and these PROMs could be evaluated on the most COSMIN properties. Based on the available evidence, no existing PROM stands out as the most appropriate to measure HRQL in BC populations. This is due to two factors; (i) the heterogeneity of BC and its treatments (ii) no PROM was evaluated on all COSMIN measurement properties due to a lack of validation studies. We suggest future evaluation of generic, cancer generic and BC-specific PROMs to better understand their application with BC populations and propose strategies to help clinicians and researchers.

A qualitative study of patients' feedback about Outpatient Parenteral Antimicrobial Therapy (OPAT) services in Northern England: implications for service improvement.

OBJECTIVE: Outpatient parenteral antimicrobial therapy (OPAT) provides opportunities for improved cost savings, but in the UK, implementation is patchy and a variety of service models are in use. The slow uptake in the UK and Europe is due to a number of clinical, financial and logistical issues, including concern about patient safety. The measurement of patient experience data is commonly used to inform commissioning decisions, but these focus on functional aspects of services and fail to examine the relational aspects of care. This qualitative study examines patients' experiences of OPAT. DESIGN: In-depth, semistructured interviews. SETTING: Purposive sample of OPAT patients recruited from four acute National Health Service (NHS) Trusts in Northern England. These NHS Trusts between them represented both well-established and recently set-up services running nurse at home, hospital outpatient and/or self-administration models. PARTICIPANTS: We undertook 28 semistructured interviews and one focus group (n=4). RESULTS: Despite good patient outcomes, experiences were coloured by patients' personal situation and material circumstances. Many found looking after themselves at home more difficult than they expected, while others continued to work despite their infection. Expensive car parking, late running services and the inconvenience of waiting in for the nurse to arrive frustrated patients, while efficient services, staffed by nurses with the specialist skills needed to manage intravenous treatment had the opposite effect. Many patients felt a local, general practitioner or community health centre based service would resolve many of the practical difficulties that made OPAT inconvenient. Patients could find OPAT anxiety provoking but this could be ameliorated by staff taking the time to reassure patients and provide tailored information. CONCLUSION: Services configurations must accommodate the diversity of the local population. Poor communication can leave patients lacking the confidence needed to be a competent collaborator in their own care and affect their perceptions of the service.