Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF)

Background: Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. Methods: This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQL™ quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. Results: A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQL™. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). Conclusion: The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report

Residential Moving and Preventable Hospitalizations

OBJECTIVES: To investigate the association between moving home in the first year of life and subsequent emergency admissions for potentially preventable hospitalizations. METHODS: We undertook a cohort analysis of linked anonymized data on 237 842 children in the Welsh Electronic Cohort for Children. We included children born in Wales between April 1, 1999 and December 31, 2008. The exposure was the number of residential moves from birth up to 1 year. The main outcome was emergency admissions for potentially preventable hospitalizations (PPH) between the age of 1 and 5 years. RESULTS: After adjustment for confounders, we identified that moving home frequently in the first year of life was associated with an increased risk of emergency PPH between the ages of 1 and 5 when compared with not moving. We found significant differences associated with ≥2 moves for the following: ear, nose, and throat infections (incidence risk ratio [IRR], 1.44; 95% confidence interval [CI], 1.29–1.61); convulsions/epilepsy (IRR, 1.58; 95% CI, 1.23–2.04); injuries (IRR, 1.33; 95% CI, 1.18–1.51); dehydration/gastroenteritis (IRR, 1.51; 95% CI, 1.21–1.88); asthma (IRR, 1.61; 95% CI, 1.19–2.16); influenza/pneumonia (IRR, 1.15; 95% CI, 1.00–1.32); and dental conditions (IRR, 1.30; 95% CI, 1.03–1.64) for ≥1 moves. CONCLUSIONS: Children who move home in the first year of life are at substantially increased risk of emergency admissions for PPH in early childhood. Additional research that focuses on enhancing health and social support services for highly mobile families, educating parents about safety risks, and improving housing quality is warranted

Establishing a research partnership to investigate functional loss and rehabilitation towards the end of life

Background Functional loss, the inability to perform necessary or desired tasks, is a common consequence of life-limiting illnesses and associated symptoms (pain, fatigue, breathlessness, etc.) and causes suffering for patients and families. Rehabilitation, a set of interventions designed to address functional loss, is recognised as essential within palliative care, as it can improve quality of life and reduce care costs. However, not everyone has equal access to rehabilitation. Despite limited life expectancy or uncertain ability to benefit from interventions, palliative rehabilitation services are often absent. This is partly due to a lack of high-quality research around optimal models of rehabilitation. Research in this area is methodologically challenging and requires multidisciplinary and cross-speciality collaboration. Aim and objectives We aimed to establish and grow a United Kingdom research partnership across diverse areas, commencing with partners from Edinburgh, East Anglia, Lancashire, Leeds, London and Nottingham, around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The objectives were to (1) develop a multidisciplinary, cross-speciality research partnership, (2) generate high-priority unanswered research questions with stakeholders, (3) co-design and submit high-quality competitive research proposals, including (4) sharing topic and methodological expertise, and (5) to build capacity and capability to deliver nationally generalisable studies. Activities The partnership was established with professionals from across England and Scotland with complementary areas of expertise including complex palliative and geriatric research, physiotherapy, nursing, palliative medicine and psychology. Research questions were generated through a modified version of the Child Health and Nutrition Research Initiative, which allowed for the collation and refinement of research questions relating to functional loss and rehabilitation towards the end of life. Partnership members were supported through a series of workshops to transform research ideas into proposals for submission to stage one calls by the National Institute for Health and Care Research. The partnership not only supported students, clinicians and public members with training opportunities but also supported clinicians in securing protected time from clinical duties to allow them to focus on developing local research initiatives. Reflections Through our partnership we established a network that offered researchers, clinicians, students and public members the chance to develop novel skills and explore opportunities for personal and professional development around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The partnership was crucial to foster collaboration and facilitate exchange of ideas, knowledge and experiences to build joint research study proposals

Does frequent residential mobility in early years affect the uptake and timeliness of routine immunisations? An anonymised cohort study

Background: There are conflicting findings regarding the impact of residential mobility on immunisationstatus. Our aim was to determine whether there was any association between residential mobility andtake up of immunisations and whether they were delayed in administration. Methods: We carried out a cohort analysis of children born in Wales, UK. Uptake and time of immunisationwere collected electronically. We defined frequent movers as those who had moved: 2 or more times inthe period prior to the final scheduled on-time date (4 months) for 5 in 1 vaccinations; and 3 or moretimes in the period prior to the final scheduled on-time date (12 months) for MMR, pneumococcal andmeningitis C vaccinations. We defined immunisations due at 2–4 months delayed if they had not beengiven by age 1; and those due at 12–13 months as delayed if they had not been given by age 2. Results: Uptake rates of routine immunisations and whether they were given within the specified time-frame were high for both groups. There was no increased risk (odds ratios (95% confidence intervals)between frequent movers compared to non-movers for the uptake of: primary MMR 1.08 (0.88–1.32);booster Meningitis C 1.65 (0.93–2.92); booster pneumococcal 1.60 (0.59–4.31); primary 5 in 1 1.28(0.92–1.78); and timeliness: primary MMR 0.92 (0.79–1.07); booster Meningitis C 1.26 (0.77–2.07);booster pneumococcal 1.69 (0.23–12.14); and primary 5 in 1 1.04 (0.88–1.23). Discussion: Findings suggest that children who move home frequently are not adversely affected in termsof the uptake of immunisations and whether they were given within a specified timeframe. Both werehigh and may reflect proactive behaviour in the primary healthcare setting to meet Government coveragerates for immunisation

Do Children Who Move Home and School Frequently Have Poorer Educational Outcomes in Their Early Years at School? An Anonymised Cohort Study

Frequent mobility has been linked to poorer educational attainment. We investigated the association between moving home and moving school frequently and the early childhood formal educational achievement. We carried out a cohort analysis of 121,422 children with anonymised linked records. Our exposure measures were: 1) the number of residential moves registered with a health care provider, and 2) number of school moves. Our outcome was the formal educational assessment at age 6–7. Binary regression modeling was used to examine residential moves within the three time periods: 0 – ,1 year; 1 – ,4 years and 4 – ,6 years. School moves were examined from age 4 to age 6. We adjusted for demographics, residential moves at different times, school moves and birth related variables. Children who moved home frequently were more likely not to achieve in formal assessments compared with children not moving. Adjusted odds ratios were significant for 3 or more moves within the time period 1 –,4 years and for any number of residential moves within the time period 4– ,6 years. There was a dose response relationship, with increased odds ratios with increased frequency of residential moves (2 or more moves at 4–,6 years, adjusted odds ratio 1.16 (1.03, 1.29). The most marked effect was seen with frequent school moves where 2 or more moves resulted in an adjusted odds ratio of 2.33 (1.82, 2.98). This is the first study to examine the relationship between residential and school moves in early childhood and the effect on educational attainment. Children experiencing frequent mobility may be disadvantaged and should be closely monitored. Additional educational support services should be afforded to children, particularly those who frequently change school, in order to help them achieve the expected educational standards

Strength in numbers : patient experiences of group exercise within hospice palliative care

Background: Exercise is increasingly recognized as a core component of palliative rehabilitation. The group exercise model is often adopted as a means of reaching more patients with limited resource. Despite the growth of quantitative research examining this area of practice, few qualitative studies have looked at the patient experience of participating in group exercise in a palliative setting, and most exclude patients with a non-cancer diagnosis. Methods: The aim of this study was to explore patients’ experiences of participating in group exercise classes in a hospice setting. In this qualitative, phenomenological study, nine patients participating in a group exercise programme at a South London hospice completed semi-structured interviews. Participants were purposively sampled by gender, age, ethnicity and diagnosis; to include diagnoses across cancer, respiratory and neurological conditions. Transcripts were interpreted using thematic analysis. Results: All patients reported positive experiences of participating in group exercise classes. Improvements reported in physical function had a positive effect on ability to complete activities of daily living and enhanced patient mood. Other reported psychosocial benefits included: promotion of self-management; space and opportunity for reflection; supportive relationships; sharing of information; and a deeper appreciation of patients’ own abilities. Conclusion: This study highlights the positive experiences and value of group exercise classes to groups of people with diverse cancer and non-cancer conditions. The physical, emotional and psychosocial benefits suggest hospices and other palliative services should explore similar programmes as part of their rehabilitation services. The recognition that exercise groups can be mixed and need not be bespoke to one condition has positive cost and staff resource ramifications

Palliative care early in the care continuum among patients with serious respiratory illness an official ATS/AAHPM/HPNA/SWHPN policy statement

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary–critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary–critical care clinicians and policymakers for its proactive integration

Research priorities to address the global burden of chronic obstructive pulmonary disease (COPD) in the next decade

Background The global prevalence of chronic obstructive pulmonary disease (COPD) has increased markedly in recent decades. Given the scarcity of resources available to address global health challenges and respiratory medicine being relatively under-invested in, it is important to define research priorities for COPD globally. In this paper, we aim to identify a ranked set of COPD research priorities that need to be addressed in the next 10 years to substantially reduce the global impact of COPD. Methods We adapted the Child Health and Nutrition Research Initiative (CHNRI) methodology to identify global COPD research priorities. Results 62 experts contributed 230 research ideas, which were scored by 34 researchers according to six pre-defined criteria: answerability, effectiveness, feasibility, deliverability, burden reduction, and equity. The top-ranked research priority was the need for new effective strategies to support smoking cessation. Of the top 20 overall research priorities, six were focused on feasible and cost-effective pulmonary rehabilitation delivery and access, particularly in primary/community care and low-resource settings. Three of the top 10 overall priorities called for research on improved screening and accurate diagnostic methods for COPD in low-resource primary care settings. Further ideas that drew support involved a better understanding of risk factors for COPD, development of effective training programmes for health workers and physicians in low resource settings, and evaluation of novel interventions to encourage physical activity. Conclusions The experts agreed that the most pressing feasible research questions to address in the next decade for COPD reduction were on prevention, diagnosis and rehabilitation of COPD, especially in low resource settings. The largest gains should be expected in low- and middle-income countries (LMIC) settings, as the large majority of COPD deaths occur in those settings. Research priorities identified by this systematic international process should inform and motivate policymakers, funders, and researchers to support and conduct research to reduce the global burden of COPD

Observation of associated near-side and away-side long-range correlations in √sNN=5.02 TeV proton-lead collisions with the ATLAS detector

Two-particle correlations in relative azimuthal angle (Δϕ) and pseudorapidity (Δη) are measured in √sNN=5.02  TeV p+Pb collisions using the ATLAS detector at the LHC. The measurements are performed using approximately 1  μb-1 of data as a function of transverse momentum (pT) and the transverse energy (ΣETPb) summed over 3.1<η<4.9 in the direction of the Pb beam. The correlation function, constructed from charged particles, exhibits a long-range (2<|Δη|<5) “near-side” (Δϕ∼0) correlation that grows rapidly with increasing ΣETPb. A long-range “away-side” (Δϕ∼π) correlation, obtained by subtracting the expected contributions from recoiling dijets and other sources estimated using events with small ΣETPb, is found to match the near-side correlation in magnitude, shape (in Δη and Δϕ) and ΣETPb dependence. The resultant Δϕ correlation is approximately symmetric about π/2, and is consistent with a dominant cos⁡2Δϕ modulation for all ΣETPb ranges and particle pT

Search for direct production of charginos and neutralinos in events with three leptons and missing transverse momentum in √s = 7 TeV pp collisions with the ATLAS detector

A search for the direct production of charginos and neutralinos in final states with three electrons or muons and missing transverse momentum is presented. The analysis is based on 4.7 fb−1 of proton–proton collision data delivered by the Large Hadron Collider and recorded with the ATLAS detector. Observations are consistent with Standard Model expectations in three signal regions that are either depleted or enriched in Z-boson decays. Upper limits at 95% confidence level are set in R-parity conserving phenomenological minimal supersymmetric models and in simplified models, significantly extending previous results