'Caring beyond capacity' during the coronavirus pandemic: resilience and family carers of people with dementia from the IDEAL cohort.

Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study was to explore seven family carers' accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and 'caring beyond capacity' due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort.

BACKGROUND AND OBJECTIVES: People with dementia have been affected in unique ways during the COVID-19 pandemic. It is not known whether the impact of the pandemic has changed with time or with the changes in social restrictions. This study explored how experiences of coping with the effects of the pandemic in the UK changed over time. RESEARCH DESIGN AND METHODS: We conducted semi-structured interviews with people with dementia living in the community in England and Wales who had taken part in a qualitative interview at an earlier stage of the pandemic. We applied framework analysis to identify themes and compared these with interviewees' previous accounts. FINDINGS: Nine people aged between 51 and 89 years were interviewed; four were female and five had early onset dementia. We identified three themes: 1. Navigating a changing world: Living with coronavirus; 2. A 'downward spiral': Managing advancing dementia; and 3. Availability, accessibility, and suitability of support. Findings reflect participants' ongoing caution about re-emerging from social restrictions to resume valued activities, and how this led to coping behaviours to minimise the impact on wellbeing in the absence of formal support and services. DISCUSSION AND IMPLICATIONS: Despite easing of restrictions across the UK, the negative impact of the coronavirus pandemic on people with dementia continues. Whilst individuals and services have adapted to some of the challenges, there is now an opportunity to rebuild support networks and services to ensure people with dementia are suitably advised, supported and socially engaged to allow them to live as well as possible.

Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: Experiences of IDEAL cohort participants.

This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID-19 vaccination roll-out. We conducted 12 semi-structured interviews with people with dementia aged 50-88 years, living alone or with a partner, and 10 carers aged 61-78 years, all living with the person with dementia. Three of the interviews were with dyads. Participants were recruited during November and December 2020. We used framework analysis to identify themes and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers noticed changes in the person with dementia and increased caring responsibilities, and for some, a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of re-engaging where an inability to access usual activities made things worse. People with dementia and carers experienced neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and being socially active, and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer-term experience of social isolation several months into the pandemic. It highlights the importance of health and community groups and suggests how services can find ways to support, include, and interact with people with dementia and carers during and after social restrictions.

Clinical features of bowel disease in patients aged <50 years in primary care: a large case-control study.

BACKGROUND: Incidences of colorectal cancer (CRC) and inflammatory bowel disease (IBD) are increasing in those aged <50 years. AIM: To identify and quantify clinical features in primary care of CRC/IBD in those aged <50 years. This study considered the two conditions together and aimed to determine which younger patients, presenting in primary care with symptoms, would benefit from investigation for potentially serious colorectal disease. DESIGN AND SETTING: Matched case-control study using primary care records from the Clinical Practice Research Datalink, UK. METHOD: Incident cases (aged <50 years) of CRC (n = 1661) and IBD (n = 9578) diagnosed between 2000 and 2013 were each matched with up to three controls (n = 3979 CRC; n = 22 947 IBD). Odds ratios (OR) and positive predictive values (PPV) were estimated for features of CRC/IBD in the year before diagnosis. RESULTS: Ten features were independently associated with CRC/IBD (all P<0.001): rectal bleeding, change in bowel habit, diarrhoea, raised inflammatory markers, thrombocytosis, abdominal pain, low mean cell volume (MCV), low haemoglobin, raised white cell count, and raised hepatic enzymes. PPVs were >3% for rectal bleeding with diarrhoea, thrombocytosis, low MCV, low haemoglobin or raised inflammatory markers; for change in bowel habit with low MCV, thrombocytosis or low haemoglobin; and for diarrhoea with thrombocytosis. CONCLUSION: This study quantified the risk of serious bowel disease in symptomatic patients aged <50 years in primary care. Rectal bleeding and change in bowel habit are strongly predictive of CRC/IBD when combined with abnormal haematology. The present findings help prioritise patients for colonoscopy where the diagnosis is not immediately apparent.

Performance characteristics of visualising the cervix in symptomatic young females: a review of primary care records in females with and without cervical cancer.

BACKGROUND: The current strategy for timely detection of cervical cancer in young females centres on visualising the cervix when females present with gynaecological symptoms, but is based on expert opinion without an evidence base. AIM: To assess visualising the cervix in primary care in young females with gynaecological symptoms. DESIGN AND SETTING: A review of primary care records for females in England aged 20-29 years with cervical cancer (nationwide interview-based study) and in the general population (Clinical Practice Research Datalink database). METHOD: From primary care records the proportion of females was identified with gynaecological symptoms who had documented cervical examination in the year before diagnosis (cancers) and in 1-year age bands (general population). Of these, the proportion was identified that was then referred for suspected malignancy. RESULTS: Only 39% of young females with cervical cancer had documented examination at symptomatic presentation. Visualisation resulted in referral for suspected malignancy for 18% of those examined (95% confidence interval = 5% to 40%). Very few (<1.7%) symptomatic females in the general population had documented cervical examination. None were referred for suspected malignancy at the time. CONCLUSION: The sensitivity of cervical examination to detect cancer is very low, highlighting the need for better triage tools for primary care. Until such tools are identified GPs should continue to consider cervical cancer when symptoms persist and the cervix is not obviously abnormal on clinical examination. Further research on additional triage tools such as cervical cytology used as a diagnostic aid is needed urgently.

For which cancers might patients benefit most from expedited symptomatic diagnosis? Construction of a ranking order by a modified Delphi technique.

BACKGROUND: This study aimed to answer the question 'for which cancers, in a symptomatic patient, does expediting the diagnosis provide an improvement in mortality and/or morbidity?' METHODS: An initial ranking was constructed from previous work identifying 'avoidable deaths' for 21 common cancers in the UK. In a two-round modified Delphi exercise, 22 experts, all experienced across multiple cancers, used an evidence pack summarising recent relevant publications and their own experience to adjust this ranking. Participants also answered on a Likert scale whether they anticipated mortality or morbidity benefits for each cancer from expedited diagnosis. RESULTS: Substantial changes in ranking occurred in the Delphi exercise. Finally, expedited diagnosis was judged to provide the greatest mortality benefit in breast cancer, uterine cancer and melanoma, and least in brain and pancreatic cancers. Three cancers, prostate, brain and pancreas, attracted a median answer of 'disagree' to whether they expected mortality benefits from expedited diagnosis of symptomatic cancer. CONCLUSIONS: Our results can guide future research, with emphasis given to studying interventions to improve symptomatic diagnosis of those cancers ranked highly. In contrast, research efforts for cancers with the lowest rankings could be re-directed towards alternative avenues more likely to yield benefit, such as screening or treatment.

Clinical features of metastatic cancer in primary care: a case-control study using medical records.

BACKGROUND: How metastatic cancer initially presents is largely unknown. AIM: To identify clinical features of metastatic cancer in primary care. DESIGN AND SETTING: Case-control study in 11 general practices in Devon, UK. METHOD: Cases of patients who had died with metastatic breast, colorectal, or prostate cancer were selected. In addition, two control groups were formed of patients with the same primary cancer but without metastases ('cancer controls') and patients without cancer ('healthy controls'), matched for age, sex, and practice. All symptoms, signs, and laboratory test abnormalities in the year before metastasis were identified. The primary analysis used conditional logistic regression. RESULTS: In total, 162 cases, 152 cancer controls, and 145 healthy controls were studied. Common symptoms associated with cancer were: vomiting, 40 (25%) cases and 13 (9%) cancer controls (multivariable odds ratio [OR] 3.5, 95% confidence interval [CI] = 1.3 to 9.4, P = 0.011); low back pain, 38 (24%) cases and 17 (11%) cancer controls (OR 2.5, 95% CI = 1.1 to 5.6, P = 0.032); loss of appetite, 32 (20%) cases and nine (6%) cancer controls (OR 4.0, 95% CI = 1.2 to 13.2, P = 0.021); and shoulder pain, 27 (17%) cases and eight (5%) cancer controls (OR 5.3, 95% CI = 1.6 to 18, P = 0.007). Groin pain was uncommon, but strongly associated (16 [10%] cases and one [1%] cancer control [OR 10, 95% CI = 1.2 to 82, P = 0.032]), as was pleural disease (nine [6%] cases and one [1%] cancer control [OR 10, 95% CI = 1.1 to 92, P = 0.038]). CONCLUSION: These features of disseminated cancer have been reported before in studies from secondary care, but the scarcity of specific symptoms (such as local pain) and the fairly common occurrence of non-specific symptoms (vomiting and loss of appetite) is important and may explain delays in the diagnosis of metastases.

Non-visible versus visible haematuria and bladder cancer risk: a study of electronic records in primary care.

BACKGROUND: Diagnosis of bladder cancer relies on investigation of symptoms presented to primary care, notably visible haematuria. The importance of non-visible haematuria has never been estimated. AIM: To estimate the risk of bladder cancer with non-visible haematuria. DESIGN AND SETTING: A case-control study using UK electronic primary care medical records, including uncoded data to supplement coded records. METHOD: A total of 4915 patients (aged ≥40 years) diagnosed with bladder cancer between January 2000 and December 2009 were selected from the Clinical Practice Research Datalink and matched to 21 718 controls for age, sex, and practice. Variables for visible and non-visible haematuria were derived from coded and uncoded data. Analyses used multivariable conditional logistic regression, followed by estimation of positive predictive values (PPVs) for bladder cancer using Bayes' theorem. RESULTS: Non-visible haematuria (coded/uncoded data) was independently associated with bladder cancer: odds ratio (OR) 20 (95% confidence interval [CI] =12 to 33). The PPV of non-visible haematuria was 1.6% (95% CI = 1.2 to 2.1) in those aged ≥60 years and 0.8% (95% CI = 0.1 to 5.6) in 40-59-year-olds. The PPV of visible haematuria was 2.8% (95% CI = 2.5 to 3.1) and 1.2% (95% CI = 0.6 to 2.3) for the same age groups respectively, lower than those calculated using coded data alone. The proportion of records of visible haematuria in coded, rather than uncoded, format was higher in cases than in controls (P<0.002, χ(2) test). There was no evidence for such differential recording of non-visible haematuria by case/control status (P = 0.78), although, overall, the uncoded format was preferred (P<0.001). CONCLUSION: Both non-visible and visible haematuria are associated with bladder cancer, although the visible form confers nearly twice the risk of cancer compared with the non-visible form. GPs' style of record keeping varies by symptom and possible diagnosis.

What works in practice: user and provider perspectives on the acceptability, affordability, implementation, and impact of a family-based intervention for child overweight and obesity delivered at scale.

BACKGROUND: As part of a study considering the impact of a child weight management programme when rolled out at scale following an RCT, this qualitative study focused on acceptability and implementation for providers and for families taking part. METHODS: Participants were selected on the basis of a maximum variation sample providing a range of experiences and social contexts. Qualitative interviews were conducted with 29 professionals who commissioned or delivered the programme, and 64 individuals from 23 families in 3 English regions. Topic guides were used as a tool rather than a rule, enabling participants to construct a narrative about their experiences. Transcripts were analysed using framework analysis. RESULTS: Practical problems such as transport, work schedules and competing demands on family time were common barriers to participation. Delivery partners often put considerable efforts into recruiting, retaining and motivating families, which increased uptake but also increased cost. Parents and providers valued skilled delivery staff. Some providers made adaptations to meet local social and cultural needs. Both providers and parents expressed concerns about long term outcomes, and how this was compromised by an obesogenic environment. Concerns about funding together with barriers to uptake and engagement could translate into barriers to commissioning. Where these barriers were not experienced, commissioners were enthusiastic about continuing the programme. CONCLUSIONS: Most families felt that they had gained something from the programme, but few felt that it had 'worked' for them. The demands on families including time and emotional work were experienced as difficult. For commissioners, an RCT with positive results was an important driver, but family barriers, alongside concerns about recruitment and retention, a desire for local adaptability with qualified motivated staff, and funding changes discouraged some from planning to use the intervention in future.

Clinical features of bladder cancer in primary care.

BACKGROUND: Bladder cancer accounts for over 150,000 deaths worldwide. No screening is available, so diagnosis depends on investigations of symptoms. Of these, only visible haematuria has been studied in primary care. AIM: To identify and quantify the features of bladder cancer in primary care. DESIGN AND SETTING: Case-control study, using electronic medical records from UK primary care. METHOD: Participants were 4915 patients aged ≥40 years, diagnosed with bladder cancer January 2000 to December 2009, and 21,718 age, sex, and practice-matched controls, were selected from the General Practice Research Database, UK. All clinical features independently associated with bladder cancer using conditional logistic regression were identified, and their positive predictive values for bladder cancer, singly and in combination, were estimated. RESULTS: Cases consulted their GP more frequently than controls before diagnosis: median 15 consultations (interquartile range 9-22) versus 8 (4-15): P<0.001. Seven features were independently associated with bladder cancer: visible haematuria, odds ratio 34 (95% confidence interval [CI] = 29 to 41), dysuria 4.1 (95% CI = 3.4 to 5.0), urinary tract infection 2.2 (95% CI = 2.0 to 2.5), raised white blood cell count 2.1 (95% CI = 1.6 to 2.8), abdominal pain 2.0 (95% CI = 1.6 to 2.4), constipation 1.5 (95% CI = 1.2 to 1.9), raised inflammatory markers 1.5 (95% CI = 1.2 to 1.9), and raised creatinine 1.3 (95% CI = 1.2 to 1.4). The positive predictive value for visible haematuria in patients aged ≥60 years was PPV of 2.6% (95% CI = 2.2 to 3.2). CONCLUSION: Visible haematuria is the commonest and most powerful predictor of bladder cancer in primary care, and warrants investigation. Most other previously reported features of bladder cancer were associated with the disease, but with low predictive values. There is a need for improved diagnostic methods, for those patients whose bladder cancer presents without visible haematuria.