BackgroundIt is increasingly internationally recognized that a cancer diagnosis impacts on people practically and financially as well as physically and psychologically. It is less clear what to do about this. This study introduces an original community service designed to mitigate this wider impact. Nonclinical “link officers” use holistic needs assessment (HNA) to help newly diagnosed people identify and quantify the severity of their physical, psychological, practical, financial, and social concerns. A care plan is then agreed, usually involving community interventions from partner agencies. Following intervention, assessment is repeated. The primary aim of this study was to establish whether there was a significant difference between initial assessment and follow‐up, postintervention. Secondary aim was to identify potential predictors of increased levels of concern at baseline and follow‐up.MethodPre‐ and postintervention observational cohort study. Paired t test examined the difference in mean (SD) concern severity between baseline and follow‐up. Multiple linear regression models were computed to hypothesize potential predictors of initial concern severity and severity change.ResultsThe service saw 2413 people 2014‐2017. Participants identified average 5.5 (4.7) concerns, financial concerns being most frequent. Mean severity at baseline was 7.12 (out of 10) (2.50), reducing to 3.83 (3.49) post‐treatment, paired t(4454) = 64.68, P < 0.0001, reduction of 3.31 (95% CI 3.21‐3.41). Factors associated with higher initial concern included unemployment and caring responsibilities. Unemployment was also associated with a smaller reduction of concern severity at follow‐up.ConclusionPatient level of concern went from a level associated with specialist referral to a much more manageable level. This original finding is internationally significant because it extends Khera et al's (2017) “provocative idea” that all patients should be screened for financial problems to show that they can be helped with all their concerns. This article describes a successful, transferable model of community care.
IntroductionSuicide is a tragic outcome with devastating consequences. In 2018, Scotland experienced a 15% increase in suicide from 680 to 784 deaths. This was marked among young people, with an increase of 53% in those aged 15-24, the highest since 2007. Early intervention in those most at risk is key, but identification of individuals at risk is complex, and efforts remain largely targeted towards universal suicide prevention strategies with little evidence of effectiveness. Recent evidence suggests childhood adversity is a predictor of subsequent poor social and health outcomes, including suicide. This protocol reports on methodology for harmonising lifespan hospital contacts for childhood adversity, mental health, and suicidal behaviour. This will inform where to 1) focus interventions, 2) prioritise trauma-informed approaches, and 3) adapt support avenues earlier in life for those most at risk. MethodsThis study will follow a case-control design. Scottish hospital data (physical health SMR01; mental health SMR04; maternity/birth record SMR02; mother’s linked data SMR01, SMR04, death records) from 1981 to as recent as available will be extracted for people who died by suicide aged 10-34, and linked on Community Health Index unique identifier. A randomly selected control population matched on age and geography at death will be extracted in a 1:10 ratio. International Classification of Disease (ICD) codes will be harmonised between ICD9-CM, ICD9, ICD10-CM and ICD10 for childhood adversity, mental health, and suicidal behaviour. ResultsICD codes for childhood adversity from four key studies are reported in two categories, 1) Maltreatment or violence-related codes, and 2) Codes suggestive of maltreatment. ‘Clinical Classifications Software’ ICD codes to operationalise mental health codes are also reported. Harmonised lifespan ICD categories were achieved semi-automatically, but required labour-intensive supplementary manual coding. Cross-mapped codes are reported. ConclusionsThere is a dearth of evidence about touchpoints prior to suicide. This study reports methods and harmonised ICD codes along the lifespan to understand hospital contact patterns for childhood adversity, which come to the attention of hospital practitioners.
ObjectivesTo compare health service usage of people who died at home in Scotland during the Covid-19 pandemic to the population who died at home prior to the pandemic, as a proxy measure of end-of-life care availability during the pandemic. ApproachRetrospective observational study of linked routine data: death registrations of all adults who died aged 18+ in Scotland during 12-month pandemic period (2020-03-23 to 2021-03-22) and pre-pandemic period (5 years prior), linked to inpatient acute hospital, psychiatric, and cancer registration records, and unscheduled care records (NHS24, A&E, ambulance, and Out-of-hours GP records). Service usage will be summarised for pandemic and pre-pandemic cohorts. ResultsDeaths at home increased by about 35% during the first year of the pandemic in Scotland. Health service usage before and during the pandemic will be compared, in particular, length of stay in hospital in the last year of life, to test the hypothesis that patients were discharged earlier to ease pressures on hospitals. Geographical differences in length of hospital stay will be presented in terms of NHS health boards, Urban-rural status and Scottish Index of Multiple Deprivation (SIMD). ConclusionStudying the effects of the pandemic on end-of-life care has important implications for policy and future pandemic preparedness. These preliminary results are an early step towards understanding the effects of the pandemic and motivate further linkage of social care data as soon as they are made available.
Background: Cancer impacts on patients and their families across a range of different domains. For that reason, optimal cancer care has moved away from a disease-centric focus to a more holistic approach in order to proactively support people with their individual needs and concerns. While international policy clearly advocates this agenda, implementation into routine care is limited. Therefore, relevant interventions that measurably improve patient outcomes are essential to understand if this ideal is to become routine multidisciplinary practice. The aim of this study was to analyse the impact of a proactive, holistic, community-based intervention on health-related quality of life in a cohort of people diagnosed with cancer. Secondary aim was to explore the relationship between changes in health status and: cancer type, cancer stage, number of concerns expressed and change in severity of concerns pre and post intervention. Method: Prospective observational cohort study. A convenience sample of 437 individuals were referred to the service 'Improving the Cancer Journey (ICJ) in the UK. Each completed the Euroqol EQ-5D-3 L and visual analogue scale (VAS) and a Holistic Needs Assessment (HNA) during initial visit to the service and again at follow-up review, median 84 days later. Change between scores was tested with paired t-tests and relationships between variables with multiple regression models with heteroscedasticity-consistent standard errors. Results: Participants were White British with median age between 50 and 64 years. Cancer type and stage were varied. EQ-5D utility scores improved at follow-up by 0.121 [0.0891-0.153], p < .001, and VAS scores improved by 7.81 [5.88-9.74], p < .001. The strongest predictor of change was a decrease in severity of concerns. Cancer stage 'palliative care' contributed to a reduction in health status. Conclusion: This study is the first to show that a holistic community intervention dedicated to supporting the individual concerns of participants had both a statistically significant and clinically meaningful impact on participants' health-related quality of life. The mean change in EQ-5D scores was more than the 'minimally important clinical difference' described in the literature. This is important because while quality of life has multiple determinants, this study has shown for the first time that it is possible to capture a clinically meaningful improvement as a function of reducing someone's personally identified concerns.
ObjectivesChildhood adversity (CA) carries an increased risk of developing later mental health (MH) problems and suicidal behaviour. This study aimed to summarise lifetime hospital attendances for CA and MH in young people who later died by suicide. ApproachThis study is a retrospective longitudinal case control study. Lifetime Scottish inpatient acute and psychiatric records were linked to death records and summarised for individuals born since 1981 who died by suicide in the period 1991-2017 (cases), and controls (1:10) matched on sex, age, and postcode. Relevant records were coded MH (including self-harm) and/or CA. Descriptive statistics and odds ratios (OR) were computed. ResultsData for 2,477 and 24,777 ‘cases’ and ‘controls’ were extracted, of whom 2,106 cases (85%) and 13,589 controls (55%) had lifespan hospital records. Mean age at death for cases was 23.7 (SD=4.9) and 75.9% were male. Psychiatric records represented 11.6% and 1.4% of records for cases and controls, respectively. For the age range 10-18, Maltreatment & violence-related codes were recorded for 160 (7.6%) cases and 371 (2.7%) controls, corresponding to OR=2.9 (95%CI: 2.4-3.6). This was compared with MH at 458 (21.7%) cases and 560 (4.1%) controls and OR=6.5 (95%CI: 5.7-7.4). The highest adjusted ORs were for self-harm episodes recorded in general hospital with aORmale=6.56 (95%CI: 4.96-8.68) and aORfemale=6.87 (95%CI: 4.99-9.48). ConclusionAll CA and MH presentations in inpatient hospital records were associated with greater risk of subsequent suicide, with the strongest association for self-harm.
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