An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting

Background For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings. Methods: A secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire – Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures’ domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis. Results Sixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p Conclusions This study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research

Impact of rapid near-patient STI testing on service delivery outcomes in an integrated sexual health service in the United Kingdom:a controlled interrupted time series study

OBJECTIVES: To evaluate the impact of a new clinic-based rapid sexually transmitted infection testing, diagnosis and treatment service on healthcare delivery and resource needs in an integrated sexual health service. DESIGN: Controlled interrupted time series study. SETTING: Two integrated sexual health services (SHS) in UK: Unity Sexual Health in Bristol, UK (intervention site) and Croydon Sexual Health in London (control site). PARTICIPANTS: Electronic patient records for all 58 418 attendances during the period 1 year before and 1 year after the intervention. INTERVENTION: Introduction of an in-clinic rapid testing system for gonorrhoea and chlamydia in combination with revised treatment pathways. OUTCOME MEASURES: Time-to-test notification, staff capacity, cost per episode of care and overall service costs. We also assessed rates of gonorrhoea culture swabs, follow-up attendances and examinations. RESULTS: Time-to-notification and the rate of gonorrhoea swabs significantly decreased following implementation of the new system. There was no evidence of change in follow-up visits or examination rates for patients seen in clinic related to the new system. Staff capacity in clinics appeared to be maintained across the study period. Overall, the number of episodes per week was unchanged in the intervention site, and the mean cost per episode decreased by 7.5% (95% CI 5.7% to 9.3%). CONCLUSIONS: The clear improvement in time-to-notification, while maintaining activity at a lower overall cost, suggests that the implementation of clinic-based testing had the intended impact, which bolsters the case for more widespread rollout in sexual health services

Economic Analysis Shows Value of Volunteering in Palliative Care Day Services

This is the final version. Available on open access from SAGE Publications via the DOI in this recordPublic Health Research in Palliative Care: Towards Solutions for Global Challenges seminar. Hosted online by All-Ireland Institute of Hospice and Palliative Care (AIIHPC), 17-18 November 2020Background: Research shows that people living with severe economic disadvantage are less likely to access palliative care services in the United Kingdom and that funeral poverty is growing. However, little is understood about the ways in which the structural, social, and economic aspects of poverty impact upon preparing for end of life, and experiences of dying and bereavement. While public health approaches to palliative care and ‘death awareness’ initiatives encourage wider acceptance of the need to prepare for end of life, there is a need to examine the relevance of these approaches to people struggling to live well. Aims: This study examines the notion of ‘a good death’ within low-income communities, and the ways in which poverty affects attitudes towards, and experiences of, death and dying. Methods: Taking a qualitative and engaged approach, exploratory workshops were held bringing together health care professionals, voluntary organisations, and community groups to share existing knowledge and identify research priorities. Qualitative interviews were then carried out with 10 professionals supporting individuals through end-of-life and bereavement in low-income communities (e.g. funeral directors, faith leaders, advice workers) and 10 bereaved individuals with experience of funeral poverty. Interviews were conducted via phone/video call and data include experiences of end of life and bereavement both before and during the pandemic. Results: This article will present early findings and provide evidence of the impact of poverty on experiences of death and dying at different stages of the life course; including concerns around preparing for death, experiences of end of life, and bereavement. Discussion: This paper will consider whether some public health approaches to palliative care might inadvertently increase inequalities in access to care and support, and whether specific approaches may be needed to address the concerns of people on a low income in relation to a ‘good death’.Wellcome Trus

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

Evaluating the population impact of hepatitis C direct acting antiviral treatment as prevention for people who inject drugs (EPIToPe) – a natural experiment (protocol)

Hepatitis C virus (HCV) is the second largest contributor to liver disease in the UK, with injecting drug use as the main risk factor among the estimated 200 000 people currently infected. Despite effective prevention interventions, chronic HCV prevalence remains around 40% among people who inject drugs (PWID). New direct-acting antiviral (DAA) HCV therapies comine high cure rates (>90%) and short treatment duration (8 to 12 weeks). Theoretical mathematical modelling evidence suggests HCV treatment scale-up can prevent transmission and substantially reduce HCV prevalence/incidence among PWID. Our primary aim is to generate empirical evidence on the effectiveness of HCV ‘Treatment as Prevention’ (TasP) in PWID

Supporting High-impAct useRs in Emergency Departments (SHarED) quality improvement: a mixed-method evaluation

Background The need to better manage frequent attenders or high-impact users (HIUs) in hospital emergency departments (EDs) is widely recognised. These patients often have complex medical needs and are also frequent users of other health and care services. The West of England Academic Health Science Network launched its Supporting High impAct useRs in Emergency Departments (SHarED) quality improvement programme to spread a local HIU intervention across six other EDs in five Trusts.Aim SHarED aimed to reduce ED attendance and hospital admissions by 20% for enrolled HIUs. To evaluate the implementation of SHarED, we sought to learn about the experience of staff with HIU roles and their ED colleagues and assess the impact on HIU attendance and admissions.Methods We analysed a range of data including semistructured interviews with 10 HIU staff; the number of ED staff trained in HIU management; an ED staff experience survey; and ED attendances and hospital admissions for 148 HIUs enrolled in SHarED.Results Staff with HIU roles were unanimously positive about the benefits of SHarED for both staff and patients. SHarED contributed to supporting ED staff with patient-centred recommendations and provided the basis for more integrated case management across the health and care system. 55% of ED staff received training. There were improvements in staff views relating to confidence, support, training and HIUs receiving more appropriate care. The mean monthly ED attendance per HIU reduced over time. Follow-up data for 86% (127/148) of cases showed a mean monthly ED attendances per HIU reduced by 33%, from 2.1 to 1.4, between the 6 months pre-enrolment and post-enrolment (p<0.001).Conclusion SHarED illustrates the considerable potential for a quality improvement programme to promote more integrated case management by specialist teams across the health and care system for particularly vulnerable individuals and improve working arrangements for hard-pressed staff

An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting

Siete imágenes de una melanosis situada en el cerebro.Seven pictures of a melanosis located in the brain