Developing and evaluating online COVID-centric advance care planning training and information resources for nursing staff and family members in nursing homes:The necessary discussions study protocol

Background: Nursing home residents are typically older adults with high levels of chronic illness and impairment. As such, they are particularly susceptible to severe complications and mortality from COVID-19. Since all nursing home residents are at increased risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. This study aims to develop and evaluate advance care planning (ACP) COVID-centric online training and information resources for nursing home staff and family members of residents, to improve care at the end of life during a COVID-19 outbreak. Based on the findings we will develop implementation guidelines for nursing homes to ensure wider impact and application during the pandemic and beyond. Methods: The content of the training and information resources will be based on a rapid review of literature and guidance on ACP in the context of COVID-19 and consultation with the study expert reference group. An integrated communications company will then work alongside the research team to design the online training and information resources. To evaluate the resources, we will employ a multiple case study design where a nursing home (defined as an institutional setting in which nursing care is provided to older adults on-site 24 hours a day) will be the unit of analysis or ‘case’. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. We will recruit and interview staff and family members from between 6-9 nursing homes across Northern Ireland, England and Scotland and gather quantitative data from a feedback survey included in the training and information resources. Discussion: The Necessary Discussions study is very timely given the challenging experiences of nursing homes, their staff, residents and their family members during the COVID-19 pandemic. It meets a key need and addresses an important gap in research and practice. The training and information resources will be ‘COVID-centric’, but they will also have a longstanding relevance for future ACP practice in UK care home

Methodology of Natsal-COVID Wave 2: A large, quasi-representative, longitudinal survey measuring the impact of COVID-19 on sexual and reproductive health in Britain [version 1; peer review: awaiting peer review]

Background: The National Surveys of Sexual Attitudes and Lifestyles COVID study (Natsal-COVID) was designed to understand the impact of COVID-19 on Britain’s sexual and reproductive health (SRH). Natsal-COVID Wave 1 survey and qualitative follow-up interviews were conducted in 2020. The Wave 2 survey was designed to capture one-year prevalence estimates for key SRH outcomes and measure changes over the first year of the pandemic. We describe the Wave 2 survey methodology and assess the sample representativeness. Methods: Natsal-COVID Wave 2 was conducted March-April 2021; approximately one year after the start of Britain’s first national lockdown. Data were collected using an online web-panel survey administered by Ipsos. The sample comprised a longitudinal sample of Wave 1 participants who had agreed to re-contact plus a sample of participants residing in Britain, aged 18-59, including a boost sample comprising people aged 18-29. Questions covered reproductive health, relationships, sexual behaviour and SRH service use. Quotas and weighting were used to achieve a quasi-representative sample of the British population. Comparisons were made with recent national probability surveys, Natsal-3 (2010-12) and Natsal-COVID Wave 1 to understand bias. Results: A total of 6,658 individuals completed the survey. In terms of gender, age, ethnicity, and rurality, the weighted Natsal-COVID Wave 2 sample was like the general population. Participants were less likely to be married or to report being in good health than the general population. The longitudinal sample (n=2,098) were broadly like participants who only took part in Wave 1 but were older. Among the sexually active, longitudinal participants were less likely to report multiple sexual partners or a new sexual partner in the past year compared to those who only took part in Wave 1. Conclusions: Natsal-COVID collected longitudinal, quasi-representative population data to enable evaluation of the population-level impact of COVID-19 on SRH and to inform policy

Contraceptive use and pregnancy planning in Britain during the first year of the COVID-19 pandemic: findings from a large, quasi-representative survey (Natsal-COVID)

BACKGROUND: Contraceptive services were significantly disrupted during the COVID-19 pandemic in Britain. We investigated contraception-related health inequalities in the first year of the pandemic. METHODS: Natsal-COVID Wave 2 surveyed 6658 adults aged 18-59 years between March and April 2021, using quotas and weighting to achieve quasi-representativeness. Our analysis included sexually active participants aged 18-44 years, described as female at birth. We analysed contraception use, contraceptive switching due to the pandemic, contraceptive service access, and pregnancy plannedness. RESULTS: Of 1488 participants, 1619 were at risk of unplanned pregnancy, of whom 54.1% (51.0%-57.1%) reported routinely using effective contraception in the past year. Among all participants, 14.3% (12.5%-16.3%) reported switching or stopping contraception due to the pandemic. 3.2% (2.0%-5.1%) of those using effective methods pre-pandemic switched to less effective methods, while 3.8% (2.5%-5.9%) stopped. 29.3% (26.9%-31.8%) of at-risk participants reported seeking contraceptive services, of whom 16.4% (13.0%-20.4%) reported difficulty accessing services. Clinic closures and cancelled appointments were commonly reported pandemic-related reasons for difficulty accessing services. This unmet need was associated with younger age, diverse sexual identities and anxiety symptoms. Of 199 pregnancies, 6.6% (3.9%-11.1%) scored as 'unplanned'; less planning was associated with younger age, lower social grade and unemployment. CONCLUSIONS: Just under a third of participants sought contraceptive services during the pandemic and most were successful, indicating resilience and adaptability of service delivery. However, one in six reported an unmet need due to the pandemic. COVID-induced inequalities in service access potentially exacerbated existing reproductive health inequalities. These should be addressed in the post-pandemic period and beyond

Implementing and evaluating online advance care planning training in UK nursing homes during COVID-19:findings from the Necessary Discussions multi-site case study project

Background Advance care planning in nursing homes is important to ensure the wishes and preferences of residents are recorded, especially during the COVID-19 pandemic. However, care staff and family members frequently report feeling unprepared for these conversations. More resources are needed to support them with these necessary discussions. This research aimed to develop, implement and evaluate a website intervention for care staff and family members to provide training and information about advance care planning during COVID-19. Methods The research was a primarily qualitative case study design, comprising multiple UK nursing home cases. Data collection included semi-structured interviews with care staff and family members which were coded and analysed thematically. A narrative synthesis was produced for each case, culminating in a thematic cross-case analysis of the total findings. Theoretical propositions were refined throughout the research. Results Eight nursing homes took part in the study, involving 35 care staff and 19 family members. Findings were reported according to the RE-AIM framework which identified the reach, effectiveness, adoption, implementation and maintenance of the intervention. Themes included: website content that was well received; suggestions for improvement; implementation barriers and facilitators; examples of organisational and personal impact. Conclusions Four theoretical propositions relating to advance care planning in nursing homes are presented, relating to: training and information needs, accessibility, context, and encouraging conversations. Implications for practice and training include an awareness of diverse learning styles, re-enforcing the right to be involved in advance care planning and encouraging opportunities for facilitated discussion

A group intervention to improve quality of life for people with advanced dementia living in care homes: the Namaste feasibility cluster RCT

Background People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision. Objectives To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes. Design The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible. Setting Nursing homes in England providing care for people with dementia. Participants Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff. Intervention Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement. Main outcome measures The two contender primary outcome measures were Comfort Assessment in Dying – End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain; informal carers, satisfaction with care at the end of life; staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change; and other data – health economic outcomes, medication/service use and intervention activity. Results Phase 1 (realist review; 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced; four intervention and two control homes completed the study. Residents with advanced dementia (n = 32) were recruited in intervention (n = 18) and control (n = 14) homes. Informal carers (total, n = 12: intervention, n = 5; control, n = 7) and 97 staff from eight sites (intervention, n = 75; control, n = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable; the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported. Conclusions A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification. Future work In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context. Trial registration Current Controlled Trials ISRCTN14948133. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 6. See the NIHR Journals Library website for further project information

Intimate physical contact between people from different households during the COVID-19 pandemic: a mixed-methods study from a large, quasi-representative survey (Natsal-COVID)

OBJECTIVES: Physical distancing as a non-pharmaceutical intervention aims to reduce interactions between people to prevent SARS-CoV-2 transmission. Intimate physical contact outside the household (IPCOH) may expand transmission networks by connecting households. We aimed to explore whether intimacy needs impacted adherence to physical distancing following lockdown in Britain in March 2020. METHODS: The Natsal-COVID web-panel survey (July-August 2020) used quota-sampling and weighting to achieve a quasi-representative population sample. We estimate reporting of IPCOH with a romantic/sexual partner in the 4 weeks prior to interview, describe the type of contact, identify demographic and behavioural factors associated with IPCOH and present age-adjusted ORs (aORs). Qualitative interviews (n=18) were conducted to understand the context, reasons and decision making around IPCOH. RESULTS: Of 6654 participants aged 18-59 years, 9.9% (95% CI 9.1% to 10.6%) reported IPCOH. IPCOH was highest in those aged 18-24 (17.7%), identifying as gay or lesbian (19.5%), and in steady non-cohabiting relationships (56.3%). IPCOH was associated with reporting risk behaviours (eg, condomless sex, higher alcohol consumption). IPCOH was less likely among those reporting bad/very bad health (aOR 0.54; 95% CI 0.32 to 0.93) but more likely among those with COVID-19 symptoms and/or diagnosis (aOR 1.34; 95% CI 1.10 to 1.65). Two-thirds (64.4%) of IPCOH was reported as being within a support bubble. Qualitative interviews found that people reporting IPCOH deliberated over, and made efforts to mitigate, the risks. CONCLUSIONS: Given 90% of people did not report IPCOH, this contact may not be a large additional contributor to SARS-CoV-2 transmission, although heterogeneity exists within the population. Public health messages need to recognise how single people and partners living apart balance sexual intimacy and relationship needs with adherence to control measures

The Future Colorectal Cancer Burden Attributable to Modifiable Behaviors: A Pooled Cohort Study

Background: Previous estimates of the colorectal cancer (CRC) burden attributed to behaviors have not considered joint effects, competing risk, or population subgroup differences. Methods: We pooled data from seven prospective Australian cohort studies (n ¼ 367 058) and linked them to national registries to identify CRCs and deaths. We estimated the strength of the associations between behaviors and CRC risk using a parametric piecewise constant hazards model, adjusting for age, sex, study, and other behaviors. Exposure prevalence was estimated from contemporary National Health Surveys. We calculated population attributable fractions for CRC preventable by changes to current behaviors, accounting for competing risk of death and risk factor interdependence. Statistical tests were two-sided. Results: During the first 10 years of follow-up, there were 3471 incident CRCs. Overweight or obesity explained 11.1%, ever smoking explained 10.7% (current smoking 3.9%), and drinking more than two compared with two or fewer alcoholic drinks per day explained 5.8% of the CRC burden. Jointly, these factors were responsible for 24.9% (95% confidence interval [CI] ¼ 19.7% to 29.9%) of the burden, higher for men (36.7%) than women (13.2%, Pdifference < .001). The burden attributed to these factors was also higher for those born in Australia (28.7%) than elsewhere (16.8%, Pdifference ¼ .047). We observed modification of the smoking-attributable burden by alcohol consumption and educational attainment, and modification of the obesity-attributable burden by age group and birthplace. Conclusions: We produced up-to-date estimates of the future CRC burden attributed to modifiable behaviors. We revealed novel differences between men and women, and other high–CRC burden subgroups that could potentially benefit most from programs that support behavioral change and early detection.This work was supported by the Australian National Health and Medical Research Council (NHMRC; ID1060991). The Australian NHMRC also supported Dr. Laaksonen (ID1053642), Prof. Canfell (ID1082989), Prof. Banks (ID1042717), Prof. Shaw (ID1079438), and Prof. Magliano (ID1118161). Dr. Laaksonen was additionally supported by the Cancer Institute of New South Wales (ID13/ECF/1-07). Ms. Arriaga was supported by an Australian Postgraduate Award and a Translational Cancer Research Network PhD Scholarship Top-up Award

Methodology of Natsal-COVID Wave 1: a large, quasi-representative survey with qualitative follow-up measuring the impact of COVID-19 on sexual and reproductive health in Britain.

BACKGROUND: Britain’s National Surveys of Sexual Attitudes and Lifestyles (Natsal) have been undertaken decennially since 1990 and provide a key data source underpinning sexual and reproductive health (SRH) policy. The COVID-19 pandemic disrupted many aspects of sexual lifestyles, triggering an urgent need for population-level data on sexual behaviour, relationships, and service use at a time when gold-standard in-person, household-based surveys with probability sampling were not feasible. We designed the Natsal-COVID study to understand the impact of COVID-19 on the nation’s SRH and assessed the sample representativeness. METHODS: Natsal-COVID Wave 1 data collection was conducted four months (29/7-10/8/2020) after the announcement of Britain’s first national lockdown (23/03/2020). This was an online web-panel survey administered by survey research company, Ipsos MORI. Eligible participants were resident in Britain, aged 18-59 years, and the sample included a boost of those aged 18-29. Questions covered participants’ sexual behaviour, relationships, and SRH service use. Quotas and weighting were used to achieve a quasi-representative sample of the British general population. Participants meeting criteria of interest and agreeing to recontact were selected for qualitative follow-up interviews. Comparisons were made with contemporaneous national probability surveys and Natsal-3 (2010-12) to understand bias. RESULTS: 6,654 participants completed the survey and 45 completed follow-up interviews. The weighted Natsal-COVID sample was similar to the general population in terms of gender, age, ethnicity, rurality, and, among sexually-active participants, numbers of sexual partners in the past year. However, the sample was more educated, contained more sexually-inexperienced people, and included more people in poorer health. CONCLUSIONS: Natsal-COVID Wave 1 rapidly collected quasi-representative population data to enable evaluation of the early population-level impact of COVID-19 and lockdown measures on SRH in Britain. Although sampling was less representative than the decennial Natsals, Natsal-COVID will complement national surveillance data and Natsal-4 (planned for 2022)

A Large Linked Study to Evaluate the Future Burden of Cancer in Australia Attributable to Current Modifiable Behaviours

Introduction The cancer burden preventable through modifications to risk factors can be quantified by calculating their population attributable fractions (PAFs). PAF estimates require large, prospective data to inform risk estimates and contemporary population-based prevalence data to inform the current exposure distributions, including among population subgroups. Objectives and Approach We provide estimates of the preventable future cancer burden in Australia using large linked datasets. We pooled data from seven Australian cohort studies (N=367,058) and linked them to national registries to identify cancers and deaths. We estimated the strength of the associations between behaviours and cancer risk using a proportional hazards model, adjusting for age, sex, study and other behaviours. Exposure prevalence was estimated from contemporary National Health Surveys. We harmonised risk factor data across the data sources, and calculated PAFs and their 95% confidence intervals using a novel method accounting for competing risk of death and risk factor interdependence. Results During the first 10-years follow-up, there were 3,471 incident colorectal cancers, 640 premenopausal and 2,632 postmenopausal breast cancers, 2,025 lung cancers and 22,078 deaths. The leading preventable causes were current smoking (53.7% of lung cancers), body fatness or BMI ≥ 25kg/m2 (11.1% of colorectal cancers, 10.9% of postmenopausal breast cancers), and regular alcohol consumption (12.2% of premenopausal breast cancers). Three in five lung cancers, but only one in four colorectal cancers and one in five breast cancers, were attributable to modifiable factors, when we also considered physical inactivity, dietary and hormonal factors. The burden attributable to modifiable factors was markedly higher in certain population subgroups, including men (colorectal, lung), people with risk factor clustering (colorectal, breast, lung), and individuals with low educational attainment (breast, lung). Conclusion/Implications Estimating PAFs for modifiable risk factors across cancers using contemporary exposure prevalence data can inform timely public health action to improve health and health equity. Testing PAF effect modification may identify population subgroups with the most to gain from programs that support behaviour change and early detection