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2.
BMJ Support Palliat Care ; 13(e2): e361-e372, 2023 Dec 07.
Article in English | MEDLINE | ID: mdl-34083319

ABSTRACT

BACKGROUND: Good end-of-life care is essential to ensure dignity and comfort in death. To our knowledge, there has not been a national population-based study in England of community prescribing of all drugs used in end-of-life care for patients with cancer. METHODS: 57 632 people who died from malignant cancer in their own home or in a care home in 2017 in England were included in this study. National routinely collected data were used to examine community prescriptions dispensed for drugs for symptom control and anticipatory prescribing by key sociodemographic factors in the last 4 months of life. RESULTS: 94% of people who died received drugs to control their symptoms and 65% received anticipatory prescribing. Prescribing increased for the symptom control drug group (53% to 75%) and the anticipatory prescribing group (4% to 52%) over the 4-month period to death. CONCLUSIONS: Most individuals who died of cancer in their own home or a care home were dispensed drugs commonly used to control symptoms at the end of life, as recommended by best-practice guidance. Lower prescribing activity was found for those who died in a care home, highlighting a potential need for improved end-of-life service planning.


Subject(s)
Home Care Services , Neoplasms , Terminal Care , Humans , England , Neoplasms/drug therapy , Death
3.
Support Care Cancer ; 30(4): 3151-3164, 2022 Apr.
Article in English | MEDLINE | ID: mdl-34904181

ABSTRACT

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.


Subject(s)
Prostatic Neoplasms , Quality of Life , Follow-Up Studies , Humans , Male , Morbidity , Prostatic Neoplasms/epidemiology , Prostatic Neoplasms/therapy , United Kingdom/epidemiology
4.
Eur Urol ; 79(5): 621-632, 2021 05.
Article in English | MEDLINE | ID: mdl-33581875

ABSTRACT

BACKGROUND: Little is known about health-related quality of life (HRQOL) following treatment for bladder cancer (BC). OBJECTIVE: To determine this, we undertook a cross-sectional survey covering 10% of the English population. DESIGN, SETTING, AND PARTICIPANTS: Participants 1-10 yr from diagnosis were identified through national cancer registration data. INTERVENTION: A postal survey was administered containing generic HRQOL and BC-specific outcome measures. Findings were compared with those of the general population and other pelvic cancer patients. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Generic HRQOL was measured using five-level EQ-5D (EQ-5D-5L) and European Organization for Research and Treatment of Cancer quality of life questionnaire (EORTC QLQ)-C30. BC-specific outcomes were derived from EORTC QLQ-BLM30 and EORTC QLQ-NMIBC24. RESULTS AND LIMITATIONS: A total of 1796 surveys were completed (response rate 55%), including 868 (48%) patients with non-muscle-invasive BC, 893 (50%) patients who received radiotherapy or radical cystectomy, and 35 (1.9%) patients for whom treatment was unknown. Most (69%) of the participants reported at least one problem in any EQ-5D dimension. Age/sex-adjusted generic HRQOL outcomes were similar across all stages and treatment groups, whilst problems increased with age (problems in one or more EQ-5D dimensions: <65 yr [67% {95% confidence interval or CI: 61-74}] vs 85+ yr [84% {95% CI: 81-89}], p = 0.016) and long-term conditions (no conditions [53% {95% CI: 48-58}] vs more than four conditions [94% {95% CI: 90-97}], p < 0.001). Sexual problems were reported commonly in men, increasing with younger age and radical treatment. Younger participants (under 65 yr) reported more financial difficulties (mean score 20 [95% CI: 16-25]) than those aged 85+ yr (6.8 [4.5-9.2], p < 0.001). HRQOL for BC patients (for comparison, males with problems in one or more EQ-5D dimensions 69% [95% CI: 66-72]) was significantly worse than what has been found after colorectal and prostate cancers and in the general population (51% [95% CI: 48-53], all p < 0.05). CONCLUSIONS: HRQOL following BC appears to be relatively independent of disease stage, treatment, and multimodal care. Issues are reported with sexual function and financial toxicity. HRQOL after BC is worse than that after other pelvic cancers. PATIENT SUMMARY: Patients living with bladder cancer often have reduced quality of life, which may be worse than that for other common pelvic cancer patients. Age and other illnesses appear to be more important in determining this quality of life than the treatments received. Many men complain of sexual problems. Younger patients have financial worries.


Subject(s)
Pelvic Neoplasms , Urinary Bladder Neoplasms , Cross-Sectional Studies , Humans , Male , Patient Reported Outcome Measures , Quality of Life , Rare Diseases , Surveys and Questionnaires , Urinary Bladder Neoplasms/therapy
5.
Prostate Cancer Prostatic Dis ; 24(3): 718-724, 2021 09.
Article in English | MEDLINE | ID: mdl-33479454

ABSTRACT

BACKGROUND: Prostate cancer in black men is associated with poorer outcomes than their white counterparts. However, most studies reporting this disparity were conducted in localized prostate cancer and primarily in the United States. METHODS: Data regarding prostate cancer incidence and mortality for East London between 2008 and 2010 were obtained from the UK National Disease Registration Service. We further evaluated survival outcomes of 425 cases of mCRPC in St Bartholomew's Hospital, East London, between 1997 and 2016, and analyzed whether ethnicity impacted on responses to different treatment types. RESULTS: The incidence of prostate cancer in black men was higher than white men in East London. Prostate cancer-specific mortality was proportional to incidence based on ethnic groups. In the detailed analysis of 425 patients, 103 patients (24%) were black (B), and the remainder white (W). Baseline characteristics were comparable in both groups, although black patients had a lower baseline hemoglobin (p < 0.001). Median overall survival for the total cohort was 25.5 months (B) vs 21.8 months (W) (hazard ratio (HR) = 0.81, p = 0.08). There was prolonged survival in the black population in those who only received hormone-based treatment throughout their treatment course; 39.7 months (B) vs 17.1 months (W) (HR = 0.54, p = 0.019). CONCLUSION: Black men may do better than white men with mCRPC, in the context of equal access to healthcare. The study also suggests a greater margin of benefit of hormone-based therapy in the black subpopulation.


Subject(s)
Androgen Antagonists/therapeutic use , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Black People/statistics & numerical data , Prostatic Neoplasms, Castration-Resistant/mortality , White People/statistics & numerical data , Adult , Aged , Aged, 80 and over , England/epidemiology , Follow-Up Studies , Humans , Male , Middle Aged , Prognosis , Prostatic Neoplasms, Castration-Resistant/drug therapy , Prostatic Neoplasms, Castration-Resistant/epidemiology , Prostatic Neoplasms, Castration-Resistant/pathology , Retrospective Studies , Survival Rate
6.
BMJ Open ; 11(1): e040808, 2021 01 08.
Article in English | MEDLINE | ID: mdl-33419907

ABSTRACT

OBJECTIVES: This study estimates the prevalence of cancers that are categorised as treatable but not curable (TbnC) in England. It provides a quantification of the population and a framework to aid identification of this group to enable the design of tailored support services. DESIGN: Through consultation with clinical and data experts an algorithmic definition of TbnC was developed. Using cancer registry data sets, with five other linked data sets held by the National Disease Registration Service, the algorithm was applied as part of this retrospective cohort study to estimate the size and characteristics of the TbnC population. SETTING AND PARTICIPANTS: The health data records of 1.6 million people living with cancer in England in 2015, following a cancer diagnosis between 2001 and 2015, were retrospectively assessed for TbnC status. RESULTS: An estimated 110 615 people in England were living with TbnC cancer at the end of 2015, following identification of TbnC cancer between 2012 and 2015. In addition, 51 946 people fit the initial search criteria but were found to have been in their last year of life at the end of 2015 and therefore considered separately here as end of life cases. A further 57 117 people in England were initially identified as being at high risk of recurrence or having their life being shortened by cancer but did not fit the TbnC conceptual framework and were excluded, but their results are also reported under 'group B'. CONCLUSIONS: A population living with TbnC cancer can be identified using data currently collected on a national scale in England. This large population living with TbnC cancer requires personalised treatment and support.


Subject(s)
Neoplasms , Semantic Web , England/epidemiology , Humans , Neoplasms/epidemiology , Registries , Retrospective Studies
7.
Eur Urol Focus ; 7(2): 359-365, 2021 03.
Article in English | MEDLINE | ID: mdl-32088138

ABSTRACT

BACKGROUND: UK Bladder cancer survival remains low. Nonmetastatic muscle-invasive bladder cancer (MIBC) is potentially curable. It is unclear how many patients receive nonradical treatment owing to advanced age, comorbidities, or alternative factors. OBJECTIVE: To describe treatments and assess survival by disease stage and sex for all newly diagnosed nonmetastatic MIBC in England in 2016, and to observe associations between comorbidities and treatments. DESIGN, SETTING, AND PARTICIPANTS: All new nonmetastatic MIBC diagnoses in England in 2016 were identified retrospectively using National Cancer Registration and Analysis Service, Radiotherapy Datasets, Systemic Anti-Cancer Therapy, and Hospital Episode Statistics databases. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Age, Charlson Comorbidity Index (CCI), and treatments were ascertained, and 1-yr survival was estimated using Pohar-Perme and Kaplan-Meier methods. RESULTS AND LIMITATIONS: Nonmetastatic MIBC diagnoses were registered for 2519 patients (median age 76 yr). Radical cystectomy was performed in 24%, 37% of whom received neoadjuvant chemotherapy (NAC). Radical radiotherapy was performed in 29%, 48% of whom received NAC. NAC alongside radical treatment was associated with higher 1-yr overall survival (OS)-91% (88-93%) with NAC and 83% (80-85%) without (p = 0.05). Nonradical treatments occurred for 47%, with corresponding lower OS. Females with stage II and III disease had significantly lower net survival (NS). Radically treated patients had lower CCIs. CONCLUSIONS: This analysis provides an overview of all nonmetastatic MIBC diagnosed in England in 2016. Just over half of the patients received curative-intent treatment. Of them, only 43% received NAC. One-year OS was disparate, correlating with treatment intensity. Those receiving NAC and radical therapy demonstrated highest OS. Female patients had significantly inferior NS. The data highlight a prescient unmet research need to understand the patient demographic and reasons behind treatment allocation, to address the poor survival observed in those treated nonradically, and the low NAC utilisation. The significantly aged population requires specific future focus. PATIENT SUMMARY: We looked at all patients in England in 2016 who were diagnosed with bladder cancer invading the bladder muscle. Many patients were elderly, and the most intensive treatments aiming for cure were frequently not used. Survival in women was found to be considerably worse, as was survival for less intensively treated patients.


Subject(s)
Cystectomy , Neoadjuvant Therapy , Radiotherapy , Urinary Bladder Neoplasms/therapy , Aged , Cohort Studies , England/epidemiology , Female , Humans , Kaplan-Meier Estimate , Muscles , Retrospective Studies , Treatment Outcome , Urinary Bladder Neoplasms/mortality
8.
Cancer Epidemiol ; 69: 101830, 2020 12.
Article in English | MEDLINE | ID: mdl-33002843

ABSTRACT

BACKGROUND: In the UK, inequalities exist in prostate cancer incidence, survival and treatment by area deprivation and rurality. This work aimed to identify variation in patient-reported outcomes of men with prostate cancer by area type. METHODS: A population-based survey of men 18-42 months after prostate cancer diagnosis (N = 35608) measured self-assessed health (SAH) using the EQ-5D and five functional domains using the Expanded Prostate Cancer Index Composite (EPIC-26). RESULTS: Mean SAH was higher for men in least deprived areas compared to most deprived (difference 6.3 (95 %CI 5.6-7.2)). SAH scores were lower for men in most urban areas compared to most rural (difference 2.4 (95 %CI 1.8-3.0)). Equivalent estimates in the general population reported a 13 point difference by deprivation and a 4 point difference by rurality. For each EPIC-26 domain, functional outcomes were better for men in the least deprived areas, with clinically meaningful differences observed for urinary incontinence and hormonal function. There were no clinically meaningful differences in EPIC-26 outcomes by rurality with less than a three point difference in scores for each domain between urban and rural areas. CONCLUSION: In men 18-42 months post diagnosis of prostate cancer in the UK, impacts of area deprivation and rurality on self-assessed health related quality of life were not greater than would be expected in the general population. However, clinically meaningful differences were identified for some prostate functional outcomes (urinary and hormonal function) by deprivation. No impact by rurality of residence was identified.


Subject(s)
Patient Reported Outcome Measures , Prostatic Neoplasms/epidemiology , Quality of Life/psychology , Aged , Humans , Male , United Kingdom
9.
Psychooncology ; 29(5): 886-893, 2020 05.
Article in English | MEDLINE | ID: mdl-32065691

ABSTRACT

OBJECTIVE: Clinical options for managing nonmetastatic prostate cancer (PCa) vary. Each option has side effects associated with it, leading to difficulty in decision-making. This study aimed to assess the relationship between patient involvement in treatment decision-making and subsequent decision regret (DR), and quantify the impact of health-related quality of life (HRQL) outcomes on DR. METHODS: Men living in the United Kingdom, 18 to 42 months after diagnosis of PCa, were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC-26), EQ-5D-5L, and an item on involvement in treatment decision-making. Multivariable ordinal regression was utilized, with DR categorized as none, mild, or moderate/severe regret. RESULTS: A total of 17 193 men with stage I-III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret, and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account odds ratio ([OR] = 6.42, 95% CI: 5.39-7.64) or were involved "to some extent" in decision-making (OR = 4.63, 95% CI: 4.27-5.02), compared with men who were "definitely" involved. After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel, or sexual function were more likely to experience regret compared with men with no/small problems. Better HRQL scores were associated with lower levels of DR. CONCLUSIONS: This large-scale study demonstrates the benefit of patient involvement in treatment decision-making for nonmetastatic PCa. However, men experiencing side effects and poorer HRQL report greater DR. Promoting engagement in clinical decision-making represents good practice and may reduce the risk of subsequent regret.


Subject(s)
Decision Making , Patient Participation/psychology , Patient Reported Outcome Measures , Prostatic Neoplasms/psychology , Quality of Life/psychology , Adult , Aged , Emotions , Humans , Male , Middle Aged , Prostatic Neoplasms/therapy , Surveys and Questionnaires , United Kingdom
10.
Cancer Epidemiol ; 60: 201-207, 2019 06.
Article in English | MEDLINE | ID: mdl-31071525

ABSTRACT

BACKGROUND: More men are living following a prostate cancer (PCa) diagnosis. They may need support to maximize the quality of their survival. Physical and psychological impacts of PCa are widely documented. Less is known about social impacts. We aimed to identify key factors associated with social distress following PCa. METHODS: The Life After Prostate Cancer Diagnosis study is a UK national cross-sectional survey of men 18-42 months post diagnosis of PCa. Men (n = 58 930) were invited to participate by their diagnosing cancer centre including 82% of English NHS Trusts (n = 111) and 100% of all Health Boards in Northern Ireland (n = 5), Scotland (n = 14) and Wales (n = 6). Social distress was measured using the Social Difficulties Inventory (SDI-21), 16 item Social Distress scale with men assigned to 'socially distressed'/'not socially distressed' groups, according to published guidelines. Clinical and sociodemographic variables were collected from self-report and cancer registries. RESULTS: Response rate 60.8% (n = 35 823) of whom 97% (n = 29 351) completed the Social Distress scale (mean age = 71.2; SD = 7.88). The proportion of 'socially distressed' men was 9.4%. Multivariable logistic regression analysis revealed unemployment versus employment (odds ratio (OR): 11.58 [95% CI 9.16-14.63]) and ≥3 co-morbidities versus none (OR: 5.37 [95% CI 4.61-6.27]) as key associations. Others were Androgen Deprivation Therapy, External Beam Radiotherapy in combination with another treatment, age, prior mental health problems and living in a socio-economically deprived area. CONCLUSION: Most men following PCa are socially resilient. A simple checklist could help clinicians identify men at risk of social distress.


Subject(s)
Prostatic Neoplasms/epidemiology , Quality of Life/psychology , Aged , Cross-Sectional Studies , Humans , Male , Middle Aged , Social Environment
11.
Eur Urol ; 76(2): 228-237, 2019 08.
Article in English | MEDLINE | ID: mdl-31060822

ABSTRACT

BACKGROUND: Prostate cancer incidence, treatment, and survival rates vary throughout the UK, but little is known about regional differences in quality of survival. OBJECTIVE: To investigate variations in patient-reported outcomes between UK countries and English Cancer Alliances. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional postal survey of prostate cancer survivors diagnosed 18-42mo previously. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Urinary, bowel, and sexual problems and vitality were patient reported using the Expanded Prostate Cancer Index Composite (EPIC-26) questionnaire. General health was also self-assessed. Regional variations were identified using multivariable log-linear regression. RESULTS AND LIMITATIONS: A total of 35823 men responded, 60.8% of those invited. Self-assessed health was significantly lower than the UK average in Wales and Scotland. Respondents reported more urinary incontinence in Scotland, more urinary irritation/obstruction in Scotland and Northern Ireland (NI), poorer bowel function in Scotland and NI, worse sexual function in Scotland, and reduced vitality/hormonal function in Scotland, Wales, and NI. Self-assessed health was poorer than the English average in South Yorkshire and North-East and Cumbria, with more urinary incontinence in North-East and Cumbria and Peninsula, greater sexual problems in West Midlands, and poorer vitality in North-East and Cumbria and West Midlands. Limitations include difficulty identifying clinically significant differences and limited information on pretreatment conditions. CONCLUSIONS: Despite adjustment for treatment, and clinical and sociodemographic factors, quality of survival among prostate cancer survivors varied by area of residence. Adoption of best practice from areas performing well could support enhanced survival quality in poorer performing areas, particularly with regard to bowel problems and vitality, where clinically relevant differences were reported. PATIENT SUMMARY: We conducted a UK-wide survey of patient's quality of life after treatment for prostate cancer. Outcomes were found to vary depending upon where patients live. Different service providers need to ensure that all prostate cancer patients receive the same follow-up care.


Subject(s)
Cancer Survivors , Erectile Dysfunction/epidemiology , Prostatic Neoplasms/therapy , Quality of Life , Urinary Incontinence/epidemiology , Aged , Aged, 80 and over , Cross-Sectional Studies , England/epidemiology , Health Status , Humans , Male , Middle Aged , Northern Ireland/epidemiology , Patient Reported Outcome Measures , Prevalence , Scotland/epidemiology , Wales/epidemiology
12.
Qual Life Res ; 28(10): 2741-2751, 2019 Oct.
Article in English | MEDLINE | ID: mdl-31115843

ABSTRACT

PURPOSE: There are known associations between treatment of prostate cancer (PCa) involving Androgen Deprivation Therapy (ADT) and psychological and physical side effects. We investigate the associations between cancer-related symptoms, health-related quality of life (HRQL), and poor psychological outcomes in men whose treatment for PCa involved ADT. METHODS: A cross-sectional postal questionnaire was administered to UK men 18-42 months post diagnosis of PCa. Men completed items on functional outcomes using the Expanded Prostate Cancer Index Composite (EPIC-26), EuroQol-5D (EQ-5D), and the European Organisation for Research and Treatment of Cancer (EORTC) Fatigue subscale. Psychological outcomes (mental well-being and psychological distress) were assessed using the Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) and the Kessler 6-item scale (K6), respectively. Associations between explanatory variables and psychological outcomes were assessed using stepped logistic regression. RESULTS: 13,097 men treated with ADT completed a questionnaire. A minority of men reported poor mental well-being (15.5%) or severe psychological distress (6.6%). After controlling for sociodemographic and clinical variables, reporting clinically significant fatigue was strongly associated with severe psychological distress (OR 9.92; 95% CI 7.63 to 12.89) and poor well-being (OR 3.86; 95% CI 3.38 to 4.42). All cancer-related symptoms and HRQL variables were associated with both psychological outcomes. CONCLUSIONS: While the majority of men treated with ADT did not report poor psychological outcomes, a small proportion reported severe problems. Clinically significant fatigue was demonstrated as a possible indicator of poor outcomes. Healthcare systems need to have clear protocols in place which specifically and routinely target psychological distress and fatigue.


Subject(s)
Androgen Antagonists/adverse effects , Mental Health/standards , Prostatic Neoplasms/drug therapy , Prostatic Neoplasms/psychology , Stress, Psychological/psychology , Aged , Cross-Sectional Studies , Humans , Male , Prostatic Neoplasms/pathology , Quality of Life/psychology , Surveys and Questionnaires
13.
Lancet Oncol ; 20(3): 436-447, 2019 03.
Article in English | MEDLINE | ID: mdl-30713036

ABSTRACT

BACKGROUND: Little is known about the health-related quality of life (HRQOL) of men living with advanced prostate cancer. We report population-wide functional outcomes and HRQOL in men with all stages of prostate cancer and identify implications for health-care delivery. METHODS: For this population-based study, men in the UK living 18-42 months after diagnosis of prostate cancer were identified through cancer registration data. A postal survey was administered, which contained validated measures to assess functional outcomes (urinary incontinence, urinary irritation and obstruction, bowel, sexual, and vitality and hormonal function), measured with the Expanded Prostate Cancer Index Composite short form (EPIC-26), plus questions about use of interventions for sexual dysfunction) and generic HRQOL (assessed with the 5-level EuroQol five dimensions questionnaire [EQ-5D-5L] measuring mobility, self-care, usual activities, pain or discomfort, and anxiety or depression, plus a rating of self-assessed health). Log-linear and binary logistic regression models were used to compare functional outcomes and HRQOL across diagnostic stages and self-reported treatment groups. Each model included adjustment for age, socioeconomic deprivation, and number of other long-term conditions. FINDINGS: 35 823 (60·8%) of 58 930 men responded to the survey. Disease stage was known for 30 733 (85·8%) of 35 823 men; 19 599 (63·8%) had stage I or II, 7209 (23·4%) stage III, and 3925 (12·8%) stage IV disease. Mean adjusted EPIC-26 domain scores were high, indicating good function, except for sexual function, for which scores were much lower. Compared with men who did not receive androgen deprivation therapy, more men who received the therapy reported moderate to big problems with hot flushes (30·7% [95% CI 29·8-31·6] vs 5·4% [5·0-5·8]), low energy (29·4% [95% CI 28·6-30·3] vs 14·7% [14·2-15·3]), and weight gain (22·5%, 21·7-23·3) vs 6·9% [6·5-7·3]). Poor sexual function was common (81·0%; 95% CI 80·6-81·5), regardless of stage, and more than half of men (n=18 782 [55·8%]) were not offered any intervention to help with this condition. Overall, self-assessed health was similar in men with stage I-III disease, and although slightly reduced in those with stage IV cancer, 23·5% of men with metastatic disease reported no problems on any EQ-5D dimension. INTERPRETATION: Men diagnosed with advanced disease do not report substantially different HRQOL outcomes to those diagnosed with localised disease, although considerable problems with hormonal function and fatigue are reported in men treated with androgen deprivation therapy. Sexual dysfunction is common and most men are not offered helpful intervention or support. Service improvements around sexual rehabilitation and measures to reduce the effects of androgen deprivation therapy are required. FUNDING: The Movember Foundation, in partnership with Prostate Cancer UK.


Subject(s)
Prostatic Neoplasms/epidemiology , Quality of Life , Urinary Incontinence/epidemiology , Aged , Androgen Antagonists/therapeutic use , Humans , Male , Middle Aged , Neoplasm Staging , Patient Reported Outcome Measures , Prostatic Neoplasms/pathology , Self Report , Surveys and Questionnaires , United Kingdom/epidemiology , Urinary Incontinence/pathology
14.
Int J Gynecol Cancer ; 28(9): 1714-1721, 2018 11.
Article in English | MEDLINE | ID: mdl-30358705

ABSTRACT

OBJECTIVE: The aim of this study was to develop a predictive model for risk of death in hospital for gynecological cancer patients specifically examining the impact of sociodemographic factors and emergency admissions to inform patient choice in place of death. METHODS: The model was based on data from 71,269 women with gynecological cancer as underlying cause of death in England, January 1, 2000, to July 1, 2012, in a national Hospital Episode Statistics-Office for National Statistics database. Two thousand eight hundred eight deaths were used for validation of the model. Logistic regression identified independent predictors of a hospital death: adjusting for year of death, age group, income deprivation quintile, Strategic Health Authority, gynecological cancer site, and number of elective and emergency hospital admissions and respective total durations of stay. RESULTS: Forty-three percent of deaths from gynecological cancer occurred in hospital. The variables significantly predicting death in hospital were less recent year of death (odds ratio [OR], 0.93; P < 0.001), increasing age (OR, 1.17; P < 0.001), increasing deprivation (OR, 1.06; P < 0. 001), increasing frequency and length of elective and emergency admissions (P < 0.001). The model correctly identified 73% of hospital deaths with a sensitivity of 75% and a specificity of 72%. The areas under the receiver operating curve were 0.78 for the predictive model and 0.71 for the validation data set. Each subsequent emergency admission in the last month of life increased the odds of death in hospital by 2.4 times (OR, 2.38; P < 0.001). Hospital deaths were significantly lower in all other regions compared with London. The model predicted a 16% reduction of deaths in hospital if 50% of emergency hospital admissions in the last month of life could be avoided by better community care. CONCLUSIONS: Our findings could enable identification of patients at risk of dying in hospital to ensure greater patient choice for place of death.


Subject(s)
Genital Neoplasms, Female/mortality , Adult , Aged , Aged, 80 and over , Datasets as Topic , Emergency Service, Hospital/statistics & numerical data , England/epidemiology , Female , Hospices/statistics & numerical data , Hospital Mortality , Hospitalization/statistics & numerical data , Humans , Middle Aged , Models, Statistical , Nursing Homes/statistics & numerical data , Socioeconomic Factors
15.
Br J Cancer ; 118(11): 1518-1528, 2018 05.
Article in English | MEDLINE | ID: mdl-29755116

ABSTRACT

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.


Subject(s)
Patient Reported Outcome Measures , Quality of Life/psychology , Urinary Bladder Neoplasms/therapy , Adult , Aged , Aged, 80 and over , Comorbidity , Cystectomy/statistics & numerical data , Endoscopy/statistics & numerical data , England , Female , Humans , Male , Middle Aged , Radiotherapy , Surveys and Questionnaires , Urinary Bladder Neoplasms/ethnology , Urinary Bladder Neoplasms/psychology
16.
Br J Cancer ; 118(8): 1130-1141, 2018 04.
Article in English | MEDLINE | ID: mdl-29567982

ABSTRACT

BACKGROUND: Changing population-level exposure to modifiable risk factors is a key driver of changing cancer incidence. Understanding these changes is therefore vital when prioritising risk-reduction policies, in order to have the biggest impact on reducing cancer incidence. UK figures on the number of risk factor-attributable cancers are updated here to reflect changing behaviour as assessed in representative national surveys, and new epidemiological evidence. Figures are also presented by UK constituent country because prevalence of risk factor exposure varies between them. METHODS: Population attributable fractions (PAFs) were calculated for combinations of risk factor and cancer type with sufficient/convincing evidence of a causal association. Relative risks (RRs) were drawn from meta-analyses of cohort studies where possible. Prevalence of exposure to risk factors was obtained from nationally representative population surveys. Cancer incidence data for 2015 were sourced from national data releases and, where needed, personal communications. PAF calculations were stratified by age, sex and risk factor exposure level and then combined to create summary PAFs by cancer type, sex and country. RESULTS: Nearly four in ten (37.7%) cancer cases in 2015 in the UK were attributable to known risk factors. The proportion was around two percentage points higher in UK males (38.6%) than in UK females (36.8%). Comparing UK countries, the attributable proportion was highest in Scotland (41.5% for persons) and lowest in England (37.3% for persons). Tobacco smoking contributed by far the largest proportion of attributable cancer cases, followed by overweight/obesity, accounting for 15.1% and 6.3%, respectively, of all cases in the UK in 2015. For 10 cancer types, including two of the five most common cancer types in the UK (lung cancer and melanoma skin cancer), more than 70% of UK cancer cases were attributable to known risk factors. CONCLUSION: Tobacco and overweight/obesity remain the top contributors of attributable cancer cases. Tobacco smoking has the highest PAF because it greatly increases cancer risk and has a large number of cancer types associated with it. Overweight/obesity has the second-highest PAF because it affects a high proportion of the UK population and is also linked with many cancer types. Public health policy may seek to mitigate the level of harm associated with exposure or reduce exposure levels-both approaches may effectively impact cancer incidence. Differences in PAFs between countries and sexes are primarily due to varying prevalence of exposure to risk factors and varying proportions of specific cancer types. This variation in turn is affected by socio-demographic differences which drive differences in exposure to theoretically avoidable 'lifestyle' factors. PAFs at UK country level have not been available previously and they should be used by policymakers in devolved nations. PAFs are estimates based on the best available data, limitations in those data would generally bias toward underestimation of PAFs. Regular collection of risk factor exposure prevalence data which corresponds with epidemiological evidence is vital for analyses like this and should remain a priority for the UK Government and devolved Administrations.


Subject(s)
Neoplasms/epidemiology , Effect Modifier, Epidemiologic , England/epidemiology , Environmental Exposure/statistics & numerical data , Exercise/physiology , Female , Health Behavior/physiology , Humans , Incidence , Life Style , Male , Northern Ireland/epidemiology , Obesity/epidemiology , Occupations/statistics & numerical data , Overweight/epidemiology , Prevalence , Risk Factors , Scotland/epidemiology , United Kingdom/epidemiology , Wales/epidemiology
17.
BJU Int ; 122(5): 845-857, 2018 11.
Article in English | MEDLINE | ID: mdl-29489050

ABSTRACT

OBJECTIVES: To provide data on the prevalence of urinary, bowel and sexual dysfunction in Northern Ireland (NI), to act as a baseline for studies of prostate cancer outcomes and to aid service provision within the general population. SUBJECTS AND METHODS: A cross-sectional postal survey of 10 000 men aged ≥40 years in NI was conducted and age-matched to the distribution of men living with prostate cancer. The EuroQoL five Dimensions five Levels (EQ-5D-5L) and 26-item Expanded Prostate Cancer Composite (EPIC-26) instruments were used to enable comparisons with prostate cancer outcome studies. Whilst representative of the prostate cancer survivor population, the age-distribution of the sample differs from the general population, thus data were generalised to the NI population by excluding those aged 40-59 years and applying survey weights. Results are presented as proportions reporting problems along with mean composite scores, with differences by respondent characteristics assessed using chi-squared tests, analysis of variance, and multivariable log-linear regression. RESULTS: Amongst men aged ≥60 years, 32.8% reported sexual dysfunction, 9.3% urinary dysfunction, and 6.5% bowel dysfunction. In all, 38.1% reported at least one problem and 2.1% all three. Worse outcome was associated with increasing number of long-term conditions, low physical activity, and higher body mass index (BMI). Urinary incontinence, urinary irritation/obstruction, and sexual dysfunction increased with age; whilst urinary incontinence, bowel, and sexual dysfunction were more common among the unemployed. CONCLUSION: These data provide an insight into sensitive issues seldom reported by elderly men, which result in poor general health, but could be addressed given adequate service provision. The relationship between these problems, raised BMI and low physical activity offers the prospect of additional health gain by addressing public health issues such as obesity. The results provide essential contemporary population data against which outcomes for those living with prostate cancer can be compared. They will facilitate greater understanding of the true impact of specific treatments such as surgical interventions, pelvic radiation or androgen-deprivation therapy.


Subject(s)
Intestinal Diseases/epidemiology , Sexual Dysfunction, Physiological/epidemiology , Urination Disorders/epidemiology , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Humans , Male , Men's Health , Middle Aged , Northern Ireland/epidemiology , Prevalence
18.
BJU Int ; 121(6): 886-892, 2018 06.
Article in English | MEDLINE | ID: mdl-29388311

ABSTRACT

OBJECTIVES: To describe contemporary radical prostatectomy (RP) practice using the British Association of Urological Surgeons (BAUS) data and audit project and to observe differences in practice in relation to surgeon or centre case-volume. PATIENTS AND METHODS: Data on 13 920 RP procedures performed by 179 surgeons across 86 centres were recorded on the BAUS data and audit platform between 1 January 2014 and 31 December 2015. This equates to ~95% of total RPs performed over this period when compared to Hospital Episode Statistics (HES) data. Centre case-volumes were categorised as 'high' (>200), 'medium' (100-200) and 'low' (<100); surgeon case-volumes were categorised as 'high' (>100) and 'low' (<100). Differences in surgical practice and selected outcome measures were observed between groups. All data and volume categories were for the combined 2-year period. RESULTS: The median number of RPs performed over the 2-year period was 63.5 per surgeon and 164 per centre. Overall, surgical approach was robot-assisted laparoscopic RP (RALP) in 65%, laparoscopic RP (LRP) in 23%, and open RP (ORP) in 12%. The dominant approach in high-case-volume centres and by high-case-volume surgeons was RALP (74.3% and 69.2%, respectively). There was a greater percentage of ORPs reported by low-volume surgeons and centres when compared to higher volume equivalents. In all, 51.6% of all patients in this series underwent RP in high-case-volume centres using robot-assisted surgery (RAS). High-case-volume surgeons performed nerve-sparing (NS) procedures on 57.3% of their cases; low-volume surgeons performing NS on 48.2%. Overall, lymph node dissection (LND) rates were very similar across the groups. An 'extended' LND was more commonly performed in high-volume centres (22.1%). The median length of stay (LOS) was lowest in patients undergoing RALP at high-volume centres (1 day) and highest in ORP across all volume categories (3-4 days). Reported pT2 positive surgical margin (PSM) rate varied by technique, centre volume, and surgeon volume. In general, observed PSM rates were lower when RALP was the surgical approach (14.4%) and when high-volume surgeons were compared to low-volume surgeons (13.6% vs 17.7%). Transfusion rates were highest in ORP across all centres and surgeons (2.96-4.49%) compared to techniques using a minimally-invasive approach (0.25-2.41%). Training cases ranged from 0.5% in low-volume centres to 6.0% in high-volume centres. CONCLUSIONS: Compliance with data registration for centres and surgeons performing RP is high in the present series. Most RPs were performed in high-case-volume centres and by high-case-volume surgeons, with the most common approaches being minimally invasive and specifically RAS. High-case-volume centres and surgeons reported higher rates of extended LND and training cases. Higher-case-volume surgeons reported lower pT2 PSM rates, whilst the most marked differences in transfusion rates and LOS were seen when ORP was compared to minimally invasive approaches. Caution must be applied when interpreting these differences on the basis of this being registry data - causality cannot be assumed.


Subject(s)
Practice Patterns, Physicians'/statistics & numerical data , Prostatectomy/statistics & numerical data , Surgeons/statistics & numerical data , Blood Transfusion/statistics & numerical data , Diagnosis-Related Groups/statistics & numerical data , England , Hospitals, High-Volume , Hospitals, Low-Volume , Humans , Laparoscopy/statistics & numerical data , Length of Stay/statistics & numerical data , Lymph Node Excision/statistics & numerical data , Male , Margins of Excision , Medical Audit , Surgicenters/statistics & numerical data , Treatment Outcome , Workload/statistics & numerical data
19.
BJU Int ; 121(6): 880-885, 2018 06.
Article in English | MEDLINE | ID: mdl-29359882

ABSTRACT

OBJECTIVE: To establish the current standard for open radical cystectomy (ORC) in England, as data entry by surgeons performing RC to the British Association of Urological Surgeons (BAUS) database was mandated in 2013 and combining this with Hospital Episodes Statistics (HES) data has allowed comprehensive outcome analysis for the first time. PATIENTS AND METHODS: All patients were included in this analysis if they were uploaded to the BAUS data registry and reported to have been performed in the 2 years between 1 January 2014 and 31 December 2015 in England (from mandate onwards) and had been documented as being performed in an open fashion (not laparoscopic, robot assisted or the technique field left blank). The HES data were accessed via the HES website. Office of Population Censuses and Surveys Classification of Surgical Operations and Procedures version 4 (OPCS-4) Code M34 was searched during the same 2-year time frame (not including M34.4 for simple cystectomy or with additional minimal access codes Y75.1-9 documenting a laparoscopic or robotic approach was used) to assess data capture. RESULTS: A total of 2 537 ORCs were recorded in the BAUS registry and 3 043 in the HES data. This indicates a capture rate of 83.4% of all cases. The median operative time was 5 h, harvesting a median of 11-20 lymph nodes, with a median blood loss of 500-1 000 mL, and a transfusion rate of 21.8%. The median length of stay was 11 days, with a 30-day mortality rate of 1.58%. CONCLUSIONS: This is the largest, contemporary cohort of ORCs in England, encompassing >80% of all performed operations. We now know the current standard for ORC in England. This provides the basis for individual surgeons and units to compare their outcomes and a standard with which future techniques and modifications can be compared.


Subject(s)
Cystectomy/standards , Standard of Care , Urinary Bladder Neoplasms/surgery , Blood Loss, Surgical/statistics & numerical data , Cohort Studies , Cystectomy/mortality , Cystectomy/statistics & numerical data , England/epidemiology , Humans , Length of Stay/statistics & numerical data , Lymph Node Excision/standards , Lymph Node Excision/statistics & numerical data , Lymphatic Metastasis , Medical Audit , Operative Time , Robotic Surgical Procedures/mortality , Robotic Surgical Procedures/statistics & numerical data , Treatment Outcome , Urinary Bladder Neoplasms/mortality , Urinary Diversion/mortality , Urinary Diversion/standards , Urinary Diversion/statistics & numerical data
20.
Int Breastfeed J ; 13: 3, 2018.
Article in English | MEDLINE | ID: mdl-29371876

ABSTRACT

BACKGROUND: Although breastfeeding is widely acknowledged as the normal method of infant feeding, there are large variations in rates of initiation and duration. Several factors are linked to the likelihood of breastfeeding initiation, including the influence and opinion of the child's father. There is limited research into men's perception of their influence, or if they feel it appropriate to be involved in deciding how to feed their children. The aim of this study was to investigate, using a qualitative methodology, fathers' perceptions of their influence on the decision to feed their child breastmilk or formula. METHODS: Six men were recruited through Children's Centres in Bristol, United Kingdom, and a phenomenological research methodology implemented using semi-structured interviews. Specific objectives were: to understand participants' views on breastfeeding; understand if and how these views were discussed with their partner; to determine if participants believed involvement in the feeding decision is appropriate; to understand how they felt about the decision made; and to see if their views changed after the birth of their child. RESULTS: Multiple themes emerged during analysis, including deferring of responsibility to the mother; breastfeeding as normal practice; change in attitude; involvement in parenting; and, advantages for the father. The men in the study accepted breastfeeding as normal behaviour, probably because of their upbringing in households where breastfeeding was practiced. There was consensus that women had more say in deciding to breastfeed, which was explained as a consequence of their greater involvement. It could also be interpreted as an unwillingness to interfere in an area perceived as 'owned' by women. Participants acknowledged that breastfeeding was more difficult than they had perceived. CONCLUSIONS: The key themes emerging from the interviews are suggestive of an impact on breastfeeding interventions that use the father as an intermediary. If they do not feel that they are 'permitted' to comment on their partner's breastfeeding, then simply increasing knowledge of breastfeeding benefits in these men is likely to have minimal impact.

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