General Population Of England Research Articles

Cancer incidence, treatment, and survival in the prison population compared with the general population in England: a population-based, matched cohort study

The growing and ageing prison population in England makes accurate cancer data of increasing importance for prison health policies. This study aimed to compare cancer incidence, treatment, and survival between patients diagnosed in prison and the general population. In this population-based, matched cohort study, we used cancer registration data from the National Cancer Registration and Analysis Service in England to identify primary invasive cancers and cervical cancers in situ diagnosed in adults (aged ≥18 years) in the prison and general populations between Jan 1, 1998, and Dec 31, 2017. Ministry of Justice and Office for National Statistics population data for England were used to calculate age-standardised incidence rates (ASIR) per year and age-standardised incidence rate ratios (ASIRR) for the 20-year period. Patients diagnosed with primary invasive cancers (ie, excluding cervical cancers in situ) in prison between Jan 1, 2012, and Dec 31, 2017 were matched to individuals from the general population and linked to hospital and treatment datasets. Matching was done in a 1:5 ratio according to 5-year age group, gender, diagnosis year, cancer site, and disease stage. Our primary objectives were to compare the incidence of cancer (1998-2017); the receipt of treatment with curative intent (2012-17 matched cohort), using logistic regression adjusted for matching variables (excluding cancer site) and route to diagnosis; and overall survival following cancer diagnosis (2012-17 matched cohort), using a Cox proportional hazards model adjusted for matching variables (excluding cancer site) and route to diagnosis, with stratification for the receipt of any treatment with curative intent. We identified 2015 incident cancers among 1964 adults (1556 [77·2%] men and 459 [22·8%] women) in English prisons in the 20-year period up to Dec 31, 2017. The ASIR for cancer for men in prison was initially lower than for men in the general population (in 1998, ASIR 119·33 per 100 000 person-years [95% CI 48·59-219·16] vs 746·97 per 100 000 person-years [742·31-751·66]), but increased to a similar level towards the end of the study period (in 2017, 856·85 per 100 000 person-years [675·12-1060·44] vs 788·59 per 100 000 person-years [784·62-792·57]). For women, the invasive cancer incidence rate was low and so ASIR was not reported for this group. Over the 20-year period, the incidence of invasive cancer for men in prison increased (incidence rate ratio per year, 1·05 [95% CI 1·04-1·06], during 1999-2017 compared with 1998). ASIRRs showed that over the 20-year period, overall cancer incidence was lower in men in prison than in men in the general population (ASIRR 0·76 [95% CI 0·73-0·80]). The difference was not statistically significant for women (ASIRR 0·83 [0·68-1·00]). Between Jan 1, 2012, and Dec 31, 2017, patients diagnosed in prison were less likely to undergo curative treatment than matched patients in the general population (274 [32·3%] of 847 patients vs 1728 [41·5%] of 4165; adjusted odds ratio (OR) 0·72 [95% CI 0·60-0·85]). Being diagnosed in prison was associated with a significantly increased risk of death on adjustment for matching variables (347 deaths during 2021·9 person-years in the prison cohort vs 1626 deaths during 10 944·2 person-years in the general population; adjusted HR 1·16 [95% CI 1·03-1·30]); this association was partly explained by stratification by curative treatment and further adjustment for diagnosis route (adjusted HR 1·05 [0·93-1·18]). Cancer incidence increased in people in prisons in England between 1998 and 2017, with patients in prison less likely to receive curative treatments and having lower overall survival than the general population. The association with survival was partly explained by accounting for differences in receipt of curative treatment and adjustment for diagnosis route. Improved routine cancer surveillance is needed to inform prison cancer policies and decrease inequalities for this under-researched population. UK National Institute for Health and Care Research, King's College London, and Strategic Priorities Fund 2019/20 of Research England via the University of Surrey.

Net survival of men with localized prostate cancer after LDR brachytherapy

OBJECTIVESTo compare survival of patients who received LDR prostate brachytherapy relative to that of peers in the general population of England, UK. PATIENTS AND METHODSNet survival was estimated for 2472 cases treated between 2002 and 2016 using population-based analysis guidelines. Life tables adjusted for social deprivation in England from the Office for National Statistics were used to match patients by affluence based on their postcode. RESULTSThe median (range) age at time of brachytherapy was 66 (55–84) years, 84% resided in Southeast England, 51% under an index of deprivation quintile 5 (most affluent), 55% were clinical stage T1 and the remainder T2. Death from any cause occurred in 270 patients at a median (range) of 7 (1–17) years postimplant.Five and 10-year estimates (95% CI) of overall survival were 96% (95–97) and 90% (89–92), and net survival 103% (102–104) and 109% (107–110) respectively. The net survival remained above 100% in all age-at-treatment and clinical stage groups. CONCLUSIONNet survival above 100% indicates patients survive longer than the matched general population. The study shows for the first time the net survival of patients treated with a radical therapy for localized prostate cancer in England. The impact of treatment choice on the long-term net survival advantage requires further investigation.

The association between body mass index and health-related quality of life in the 2017 and 2018 health survey of England data: A cross-sectional observational analysis.

To provide an updated estimate of the association between body mass index (BMI) and health-related quality of life (HRQoL) among the general population in England and to identify population subgroups with the highest potential utility gains from obesity interventions. The sample included 12 158 adults with valid HRQoL and BMI data from the 2017 and 2018 Health Survey for England. Robust standard error linear regression, controlling for demographic and socioeconomic characteristics, lifestyle behaviours and obesity-related comorbidities, was used for the baseline analysis. Robustness checks assessed the impact of (a) estimator selection; (b) model specifications; (c) statistical outliers at high BMI; (d) potential BMI measurement error; and (e) data pooling. The study found a significant association between HRQoL and BMI, which exhibited an inverted U-shaped relationship. The mean HRQoL peaked at 25.7 kg/m2 in men and 22.6 kg/m2 in women and was reduced in the underweight, overweight and obesity BMI ranges. Sensitivity analyses reported similar coefficients, suggesting a robust model specification. Reduced HRQoL beyond optimal BMI underlines the importance of maintaining a normal BMI range for overall health. The rising prevalence of class III obesity is a major public health concern given its disproportionate impact on health, health care utilization and costs. Obesity management is key to preventing the reduction in HRQoL associated with obesity-related comorbidities, and this analysis supports the development of targeted policies and population health initiatives for people with class III obesity.

Health inequalities for people with learning disabilities: why it matters and what emergency physicians need to know.

People with learning disabilities die on average 16 years earlier than the general population in England. They are a vulnerable group and may have unhealthy lifestyles and multimorbidity that lead to poor health outcomes. Worryingly, premature deaths are also more common and these often have contributory healthcare causes. This may be a result of staff lacking awareness, expertise and experience managing people with learning disabilities, the lack of reasonable adjustments, or discriminatory attitudes. Other issues include polypharmacy and inappropriate prescribing of sedatives, inappropriate use of do not resuscitate orders, and diagnostic overshadowing leading to delayed or misdiagnoses. Emergency physicians need to be aware of subtle or atypical presentations of illnesses such as sepsis. Carers and family can be vital informants, helping clinicians to interpret subtle signs and aid communication with people with learning disabilities. One simple approach to reasonable adjustments, as required by law, is the TEACH mnemonic: people with learning disabilities need more time (T), in a conducive environment (E), with clinicians approaching them with the right attitude (A) and an open mind. Good communication (C) is essential and clinicians must make every attempt to understand their patients and to be understood by their patients. Finally clinicians need to consider what 'help' (H) the patient and their carers or family needs. With the right approach, time and environment, emergency physicians can optimise the care delivered to people with learning disabilities to address their needs.

Comparing the rate of inpatient admissions of prison residents with COVID-19 to the general population in England in 2020/2021 using Hospital Episode Statistics data

ObjectiveTo compare the rate of inpatient admissions of prison residents with COVID-19 to the general population and to consider differences in the use of inpatient and outpatient services by prison...

Prevalence and characteristics of co-occurrence of smoking and increasing-and-higher-risk drinking: A population survey in England

BackgroundSmoking and drinking alcohol both significantly contribute to mortality and morbidity, and there is a need to characterise the sociodemographic and health-related characteristics (e.g. mental distress) of people who do both in order to target resources. This study reports the prevalence and characteristics of adults in the general population in England who both drink alcohol at increasing-and-higher-risk levels and smoke. MethodsWe used cross-sectional data from a monthly, nationally representative survey of adults in England (n = 37,258; April 2020-March 2022). Weighted data were used to report prevalence and unweighted data were used to report descriptive statistics for sociodemographic and health-related characteristics. ResultsThe prevalence of both smoking and increasing-and-higher-risk drinking was 4.6% (95% CI = 4.4–4.9; n = 1,574). They smoked a mean of 10.4 (SD = 8.86) cigarettes per day and had a mean AUDIT score of 12.8 (SD = 5.18). Nearly half (48.2%, n = 751) were trying to cut down on their smoking and 28.0% (n = 441) on their drinking. A quarter (25.3%, n = 397) had received General Practitioner advice on smoking while 8.7% (n = 76) had received advice on their drinking. Nearly half (48.6%, n = 745) reported experiencing psychological distress in the past month and 44.6% (n = 529) had a diagnosed mental health condition, both of which were higher than among all adults (28.1% and 29.1%, respectively). ConclusionIn England, from April 2020 to March 2022, the prevalence of both smoking and increasing-and-higher-risk drinking was 4.6%. This group appears to experience high rates of mental health problems and targeted support is needed.

Ethnicity and survival after a dementia diagnosis: a retrospective cohort study using electronic health record data

BackgroundIndividuals from minority ethnic groups in the UK are thought to be at higher risk of developing dementia while facing additional barriers to receiving timely care. However, few studies in the UK have examined if there are ethnic disparities in survival once individuals receive a dementia diagnosis.MethodsWe conducted a retrospective cohort study using electronic health record data of individuals diagnosed with dementia from a large secondary mental healthcare provider in London. Patients from Black African, Black Caribbean, South Asian, White British, and White Irish ethnic backgrounds were followed up for a 10-year period between 01 January 2008 and 31 December 2017. Data were linked to death certificate data from the Office of National Statistics to determine survival from dementia diagnosis. Standardised mortality ratios were calculated to estimate excess deaths in each ethnicity group as compared to the gender- and age-standardised population of England and Wales. We used Cox regression models to compare survival after dementia diagnosis across each ethnicity group.ResultsMortality was elevated at least twofold across all ethnicity groups with dementia compared to the general population in England and Wales. Risk of death was lower in Black Caribbean, Black African, White Irish, and South Asian groups as compared to the White British population, even after adjusting for age, gender, neighbourhood-level deprivation, indicators of mental and physical comorbidities. Risk of death remained lower after additionally accounting for those who emigrated out of the cohort.ConclusionsWhile mortality in dementia is elevated across all ethnic groups as compared to the general population, reasons for longer survival in minority ethnic groups in the UK as compared to the White British group are unclear and merit further exploration. Implications of longer survival, including carer burden and costs, should be considered in policy and planning to ensure adequate support for families and carers of individuals with dementia.

Relationship Between Educational Level and Attitudes Towards Alcohol Conversations in Healthcare: A Cross-Sectional Survey Conducted in Four European Countries.

Objectives: To examine the association between educational level and attitudes towards alcohol conversations in healthcare using population-based surveys of adults in England, the Netherlands, Norway, and Sweden; and to compare attitudes towards alcohol conversations in healthcare between these four countries. Methods: Cross-sectional surveys were conducted amongst adults in the general population in England (n = 3,499), the Netherlands (n = 2,173), Norway (n = 1,208), and Sweden (n = 3,000). Logistic regression analysis was used to examine associations between attitudes towards alcohol conversations in healthcare and educational level, key demographic variables, alcohol consumption, and country of residence. Results: In all four countries, low educational level (p < 0.001) and male gender (p < 0.001) were associated with holding negative attitudes towards discussing alcohol in healthcare. Risky drinkers had more negative attitudes than low risky drinkers towards discussing alcohol in healthcare (p < 0.001) in all countries except England (p = 0.48), and also reported low levels of perceived honesty and confidence in healthcare (p < 0.001). Conclusion: These findings highlight the importance of considering patients' socio-economic status when developing and implementing alcohol prevention interventions in healthcare.

Second Primary Malignancies in Patients with a Neuroendocrine Neoplasm in England

Introduction: Patients with neuroendocrine neoplasms (NENs) may often develop other malignancies. This study aimed to identify the frequency at which these second malignancies occurred in England. Methods: Data were extracted from the National Cancer Registration and Analysis Service (NCRAS) on all patients diagnosed with a NEN at one of eight NEN site groups between 2012 and 2018: appendix, caecum, colon, lung, pancreas, rectum, small intestine, and stomach. WHO International Classification of Disease Edition-10 (ICD-10) codes were used to identify patients who had been diagnosed with an additional non-NEN cancer. Standardized incidence ratios (SIRs) for tumours diagnosed after the index NEN were produced for each non-NEN cancer type by sex and site. Results: A total of 20,579 patients were included in the study. The most commonly occurring non-NEN cancers after NEN diagnosis were the prostate (20%), lung (20%), and breast (15%). Statistically significant SIRs were observed for non-NEN cancer of the lung (SIR = 1.85, 95% CI: 1.55–2.22), colon (SIR = 1.78, 95% CI: 1.40–2.27), prostate (SIR = 1.56, 95% CI: 1.31–1.86), kidney (SIR = 3.53, 95% CI: 2.72–4.59), and thyroid (SIR = 6.31, 95% CI: 4.26–9.33). When stratified by sex, statistically significant SIRs remained for the lung, renal, colon, and thyroid tumours. Additionally, females had a statistically significant SIR for stomach cancer (2.65, 95% CI: 1.26–5.57) and bladder cancer (SIR = 2.61, 95% CI: 1.36–5.02). Conclusion: This study found that patients with a NEN experienced a metachronous tumour of the lung, prostate, kidney, colon, and thyroid at a higher rate than the general population of England. Surveillance and engagement in existing screening programmes are required to enable earlier diagnosis of second non-NEN tumours in these patients.

COVID-19 vaccination uptake for half a million non-EU migrants and refugees in England: a linked retrospective population-based cohort study

BackgroundCOVID-19 has highlighted severe health inequities experienced by certain migrants. Despite evidence suggesting that migrants are at risk of under-immunisation, data are limited for migrants' COVID-19 vaccine uptake in England. MethodsWe did a retrospective population-based cohort study on COVID-19 vaccination uptake in England. We linked the Million Migrant cohort (which includes non-EU migrants and resettled refugees) to the national COVID-19 vaccination dataset, using a stepwise deterministic matching procedure adapted from NHS Digital, and compared migrants with the general population. For migrants who linked to at least one vaccination record, we estimate temporal trends in first dose uptake and differences in second and third dose uptake and consequent delays between Dec 8, 2020, and April 20, 2022, by age, visa type, and ethnicity. FindingsOf the 465 470 migrants who linked to one or more vaccination record, 427 073 (91·8%) received a second dose and 238 721 (51·3%) received a third. Migrants (>30 years) reached 75% first-dose coverage between 1 and 2 weeks after the general population in England, with the gap widening to 6 weeks for younger migrants (16–29 years). Refugees specifically had a higher risk of a delayed second dose (odds ratio 1·75 [95 CI% 1·62–1·88]) and third dose (1·41 [1·31–1·53]). Older migrants (>65 years) were at least four times more likely to have not received their second or third dose compared with those of the same age in England. InterpretationUptake of the first dose was slower across all age groups for migrants compared with the general population. Refugees and older migrants were more likely to have delayed uptake of COVID-19 vaccines and to not have received their second or third dose. Policymakers, researchers, and practitioners should consider how to best drive uptake of COVID-19 and other routine vaccine doses and understand and address personal and structural barriers to vaccination systems for diverse migrant populations. FundingWellcome Trust and UK Research and Innovation.

Ethnic density and area-deprivation effects on central obesity among ethnic minority people in England-A cross-sectional, multi-level analysis.

Central obesity is a risk factor for many health conditions, and it disproportionately affects some ethnic minority groups. Research has shown that there is an association between area environments and obesity, but no studies have explored the association between co-ethnic density and central obesity in the UK (United Kingdom). This paper addresses the following research question: Does the relationship between co-ethnic density/area deprivation and waist circumference differ by ethnic group in England? Data come from 4 years of the cross-sectional Health Survey for England (1998, 1999, 2003, 2004) and linked area-level data from the 2001 Census. More recent data on objectively measured central obesity for a nationally representative sample of ethnic minorities does not exist. Multi-level modeling methods account for individual-level and area-level factors. Interaction models test the effect of area deprivation and co-ethnic density for each ethnic group compared with the White reference group. For women, the relationship between area deprivation and waist circumference does not vary by ethnic group. For Indian and Bangladeshi men there is a decrease in waist circumference as area deprivation increases. There is an increase in waist circumference as co-ethnic density increases for Black Caribbean women. For Indian men there is a decrease in waist circumference as co-ethnic density increases. Further research is needed to understand the mechanisms through which (1) increasing area-deprivation is protective for Indian and Bangladeshi men and (2) increasing co-ethnic density is associated with an increase in waist circumference for Black Caribbean women but a decrease in waist circumference among Indian men. Each of these results are important because (1) Indian and Bangladeshi men have an increased risk of the metabolic syndrome, which is linked to central obesity, and (2) Black Caribbean women have a higher risk of central obesity than the general population in England.

Cell-Free DNA-Based Multi-Cancer Early Detection Test in an Asymptomatic Screening Population (NHS-Galleri): Design of a Pragmatic, Prospective Randomised Controlled Trial.

Simple SummaryNHS-Galleri is a randomised controlled trial that will assess how well a blood test can reduce the number of late-stage cancers by helping to find cancers early. The test looks at patterns in blood samples to detect a cancer signal. NHS-Galleri has enrolled over 140,000 people, invited from the general population of England aged 50–77 years who did not have or were not being investigated for cancer. Blood is being collected up to three times: first when people join the study and again 12 and 24 months later. Half the participants (chosen at random) will have their blood tested and half will have their blood stored. Participants will not be told whether their blood will be tested or stored. Participants with a cancer signal detected result will be sent for further diagnostic testing in the NHS. The trial will help the NHS decide whether to introduce screening using this test.We report the design of the NHS-Galleri trial (ISRCTN91431511), aiming to establish whether a multi-cancer early detection (MCED) test that screens asymptomatic individuals for cancer can reduce late-stage cancer incidence. This randomised controlled trial has invited approximately 1.5 million persons and enrolled over 140,000 from the general population of England (50–77 years; ≥3 years without cancer diagnosis or treatment; not undergoing investigation for suspected cancer). Blood is being collected at up to three annual visits. Following baseline blood collection, participants are randomised 1:1 to the intervention (blood tested by MCED test) or control (blood stored) arm. Only participants in the intervention arm with a cancer signal detected have results returned and are referred for urgent investigations and potential treatment. Remaining participants in both arms stay blinded and return for their next visit. Participants are encouraged to continue other NHS cancer screening programmes and seek help for new or unusual symptoms. The primary objective is to demonstrate a statistically significant reduction in the incidence rate of stage III and IV cancers diagnosed in the intervention versus control arm 3–4 years after randomisation. NHS-Galleri will help determine the clinical utility of population screening with an MCED test.

How healthy are public health service delivery workers? A mixed method study comparing the health and well-being of public health workers with the general population in England

How healthy are public health service delivery workers? A mixed method study comparing the health and well-being of public health workers with the general population in England

Intimate partner violence, suicidality, and self-harm: a probability sample survey of the general population in England

Intimate partner violence (IPV) is a recognised risk factor for psychiatric disorders. There is little current evidence on IPV and self-harm and suicidality, and we therefore aimed to investigate the associations between experience of lifetime and past-year IPV with suicidal thoughts, suicide attempt, and self-harm in the past year. We analysed the 2014 Adult Psychiatric Morbidity Survey, a cross-sectional survey of 7058 adults (aged ≥16 years) in England, which used a multistage random probability sampling design and involved face-to-face interviews. Participants were asked about experience of physical violence and sexual, economic, and emotional abuse from a current or former partner, and about suicidal thoughts, suicide attempts, and self-harm. Other adversities were recorded through an adapted version of the List of Threatening Experiences. Multivariable logistic regression models quantified associations between different indicators of lifetime and past-year IPV, with past-year non-suicidal self-harm, suicidal thoughts, and suicide attempts. All analyses were weighted. Using weighted percentages, we found that a fifth (21·4%) of 7058 adults reported lifetime experience of IPV, and that 27·2% of women and 15·3% of men had experienced IPV. Among women, 19·6% had ever experienced emotional IPV, 18·7% physical IPV, 8·5% economic IPV, and 3·7% sexual IPV, which was higher than in men (8·6%, 9·3%, 3·6%, and 0·3%, respectively). Findings for ethnicity were unclear. Lifetime prevalence of IPV was higher in those living in rented accommodation or deprived neighbourhoods. Among people who had attempted suicide in the past year, 49·7% had ever experienced IPV and 23·1% had experienced IPV in the past year (including 34·8% of women and 9·4% of men). After adjusting for demographics, socioeconomics, and lifetime experience of adversities, the odds ratio of a past-year suicide attempt were 2·82 (95% CI 1·54-5·17) times higher in those who have ever experienced IPV, compared with those who had not. Fully adjusted odds ratios for past-year self-harm (2·20, 95% CI 1·37-3·53) and suicidal thoughts (1·85, 1·39-2·46) were also raised in those who had ever experienced IPV. IPV is common in England, especially among women, and is strongly associated with self-harm and suicidality. People presenting to services in suicidal distress or after self-harm should be asked about IPV. Interventions designed to reduce the prevalence and duration of IPV might protect and improve the lives of people at risk of self-harm and suicide. UK Prevention Research Partnership.

Risk of mortality from suicide in patients with Huntington’s disease is increased compared to the general population in England

ObjectiveTo examine the relative risk of suicide mortality in patients with Huntington’s disease (HD).MethodsA case–control study design was used. We used linked electronic records from primary care, secondary care and Office for National Statistics from England from 2001 through 2019. Controls were matched to cases by general practice and suicide date. Odds ratios (ORs) were adjusted for gender and age at suicide/index date.ResultsData were available for 594,674 individuals. Patients with HD who died from suicide were significantly younger at time of death than patients with HD who died from causes other than suicide (p < 0.001). The adjusted OR for HD was 9.2 (95% confidence intervals, CI 4.9–17.4) compared to those without HD. The increase in risk was higher amongst the younger age group who were ≤ 45.8 years at suicide/index date (OR 54.5, 95% CI 10.8–276.1).ConclusionThe markedly elevated suicide risk in patients with HD suggests that implementation of suicide risk assessment may improve survival in individuals with these diseases, especially in younger patients.

Rape Stereotype Acceptance in the General Population of England and Wales

Rape Stereotype Acceptance in the General Population of England and Wales

Rape Stereotype Acceptance in the General Population of England and Wales.

The #MeToo movement has facilitated a growing awareness in the UK of rape stereotypes but there has been little research on how accurately rape is perceived in this region, especially regarding demographics such as ethnicity and age. This study recruited 1000 participants, representative of the UK population, to complete an online survey prompting beliefs about rape perpetrators, rape victims, rape allegations, male rape, and motives for and consequences of rape. After carrying out frequency analyses on agree-incorrect and disagree-incorrect statements, we found that, generally, accuracy was high, although there were higher levels of stereotype acceptance for perpetrator related stereotypes. Further analysis found that in terms of demographic differences, Black and Asian participants and men were significantly more likely to accept stereotypes than other demographic groups. Implications for policy and practice are discussed, including potential for jury education, and educational media campaigns aimed at the demographics most likely to accept stereotypes.

Intimate Partner Violence, Suicidality, and Self-Harm: A Probability Sample Survey of the General Population in England

Intimate Partner Violence, Suicidality, and Self-Harm: A Probability Sample Survey of the General Population in England

New challenges for an expanding generation of older persons with haemophilia

Abstract Background Increasing survival among people with haemophilia means that more individuals are at risk of developing age-related morbidity. Little is known about morbidity and health-related quality of life (HRQoL) in different age groups within a single large population of people with haemophilia. Aim This study aimed to explore the association between increasing age and comorbidity among people with haemophilia and to compare their HRQoL with that of a sample of the general population in England. Methods The prevalence of comorbidity recorded in medical records and HRQoL assessed by EQ-5D were compared by age group in participants in the Cost of Haemophilia in Europe: A Socioeconomic Survey study (CHESS) in Europe. HRQoL was compared with that of a sample of the general population taken from the 2012 Health Survey for England (HSE). Results Younger adults in CHESS were more likely to have received prophylaxis from an early age. The mean number of affected joints in younger adults was 1.0; participants aged 41–50 (1.25) and 51–60 years (1.41) had the highest mean number of affected joints. The prevalence of comorbidity was 36% in patients aged 18–30, 61% in 31–60-year-olds and 68% in those aged 61+. HRQoL impairment in young adults with haemophilia was comparable with that in the HSE population aged over 60. Conclusions Older people with haemophilia have impaired quality of life compared with younger adults and an increasing prevalence of several age-related disorders affecting mental health and cardiovascular and bone health. Young adults with haemophilia report impaired HRQoL comparable with that in a general population aged 61+.

Pregnancy rates and outcomes in women with cystic fibrosis in the UK: comparisons with the general population before and after the introduction of disease-modifying treatment, 2003-17.

To compare pregnancy rates and outcomes for women with cystic fibrosis in the UK with those of the general population and assess the effect of the introduction of disease-modifying treatment. A population-based longitudinal study, 2003-17. United Kingdom. Women aged 15-44 years in the UK cystic fibrosis (CF) Registry compared with women in England and Wales. We calculated pregnancy and live-birth rates for the CF population and the general population of England and Wales. For women with CF we compared pregnancy rates before and after ivacaftor was introduced in 2013. We further used CF registry data to assess pregnancy outcomes for mothers with CF, and to assess the relationship between maternal pre-pregnancy lung function and nutritional status and child gestational age. Pregnancy and live-birth rates and child gestational age. Of 3831 women with CF, 661 reported 818 pregnancies. Compared with the general population, the pregnancy rate was 3.3 times lower in the CF population (23.5 versus 77.7 per 1000 woman-years); the live-birth rate was 3.5 times lower (17.4 versus 61.4 per 1000 woman-years) with 70% of pregnancies in CF women resulting in live births; termination of pregnancy rates were also lower (9% versus 22%). Pregnancy rates increased post-ivacaftor for eligible women with CF, from 29.7 to 45.7 per 1000 woman-years. There was no association between pre-pregnancy lung function/nutrition status and gestational age. Pregnancy rates in women with CF are about one-third of the rates in the general population with favourable outcomes, and increased for eligible women post-ivacaftor. Pregnancy rates in women with CF are about a third of the rate in England and Wales with 70% live births. Ivacaftor increases the rate.