scholarly journals Identifying exceptional cystic fibrosis care services: combining statistical process control with focus groups

2019 ◽  
Vol 7 (6) ◽  
pp. 1-158
Author(s):  
Stephanie J MacNeill ◽  
Livia Pierotti ◽  
Mohammed A Mohammed ◽  
Martin Wildman ◽  
Jonathan Boote ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Socioeconomic Status ◽  
Focus Groups ◽  
Case Mix ◽  
Good Care ◽  
Statistical Process ◽  
Care Services ◽  
The Mean ◽  
The Uk ◽  
Future Work

Background The Cystic Fibrosis (CF) Registry collects clinical data on all patients attending specialist CF centres in the UK. These data have been used to make comparisons between centres on key outcomes such as forced expiratory volume in 1 second (FEV1) using simple rankings, which promote the assumption that those with the highest measures provide ‘better’ care. Objectives To explore whether or not using statistical ‘process control’ charts that move away from league tables and adjusting for case mix (age, where appropriate; sex; CF genotype; pancreatic sufficiency; and socioeconomic status) could identify exceptional CF care services in terms of clinically meaningful outcomes. Then, using insight from patients and clinicians on what structures, processes and policies are necessary for delivering good CF care, to explore whether or not care is associated with observed differences in outcomes. Design Cross-sectional analyses. Setting Specialist CF centres in the UK. Participants Patients aged ≥ 6 years attending specialist CF centres and clinicians at these centres. Main outcome measures FEV1% predicted. Data sources Annual reviews taken from the UK CF Registry (2007–15). Results We studied FEV1 in many different ways and in different periods. In our analyses of both adult and paediatric centres, we observed that some centres showed repeated evidence of ‘special-cause variation’, with mean FEV1 being greater than the mean in some cases and lower than the mean in others. Some of these differences were explained by statistical adjustment for different measures of case mix, such as age, socioeconomic status, genotype and pancreatic sufficiency. After adjustment, there was some remaining evidence of special-cause variation for some centres. Our data at these centres suggest that there may be an association with the use of intravenous antibiotics. Workshops and focus groups with clinicians at paediatric and adult centres identified a number of structures, processes and policies that were felt to be associated with good care. From these, questionnaires for CF centre directors were developed and disseminated. However, the response rate was low, limiting the questionnaires’ use. Focus groups with patients to gain their insights into what is necessary for the delivery of good care identified themes similar to those identified by clinicians, and a patient questionnaire was developed based on these insights. Limitations Our data analyses suggest that differences in intravenous antibiotic usage may be associated with centre-level outcomes; this needs to be explored further in partnership with the centres. Our survey of centre directors yielded a low response, making it difficult to gain useful knowledge to inform further discussions with sites. Conclusions Our findings confirm that the CF Registry can be used to identify differences in clinical outcomes between centres and that case mix might explain some of these differences. As such, adjustment for case mix is essential when trying to understand how and why centres differ from the mean. Future work Future work will involve exploring with clinicians how care is delivered so that we can understand associations between care and outcomes. Patients will also be asked for their perspectives on the care they receive. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Ethnic Differences in Self-Poisoning Across South London

Crisis ◽  
2014 ◽  
Vol 35 (4) ◽  
pp. 268-272
Author(s):  
Sean Cross ◽  
Dinesh Bhugra ◽  
Paul I. Dargan ◽  
David M. Wood ◽  
Shaun L. Greene ◽  
...  
Keyword(s):  
Black Women ◽  
Data Collection ◽  
White Women ◽  
Population Based ◽  
Care Services ◽  
Self Harm ◽  
Managing Risk ◽  
The Uk ◽  
Incident Cases ◽  
Minority Ethnic

Background: Self-poisoning (overdose) is the commonest form of self-harm cases presenting to acute secondary care services in the UK, where there has been limited investigation of self-harm in black and minority ethnic communities. London has the UK’s most ethnically diverse areas but presents challenges in resident-based data collection due to the large number of hospitals. Aims: To investigate the rates and characteristics of self-poisoning presentations in two central London boroughs. Method: All incident cases of self-poisoning presentations of residents of Lambeth and Southwark were identified over a 12-month period through comprehensive acute and mental health trust data collection systems at multiple hospitals. Analysis was done using STATA 12.1. Results: A rate of 121.4/100,000 was recorded across a population of more than half a million residents. Women exceeded men in all measured ethnic groups. Black women presented 1.5 times more than white women. Gender ratios within ethnicities were marked. Among those aged younger than 24 years, black women were almost 7 times more likely to present than black men were. Conclusion: Self-poisoning is the commonest form of self-harm presentation to UK hospitals but population-based rates are rare. These results have implications for formulating and managing risk in clinical services for both minority ethnic women and men.

French and Spanish Queer Film

2016 ◽  
Author(s):  
Chris Perriam ◽  
Darren Waldron
Keyword(s):  
Focus Groups ◽  
Sense Of Community ◽  
National Identities ◽  
Audience Research ◽  
Large Sample ◽  
Current State ◽  
Trans People ◽  
Screening Questionnaires ◽  
On Line ◽  
The Uk

This book advances the current state of film audience research and of our knowledge of sexuality in transnational contexts, by analysing how French LGBTQ films are seen in Spain and Spanish ones in France, as well as how these films are seen in the UK. It studies films from various genres and examines their reception across four languages (Spanish, French, Catalan, English) and engages with participants across a range of digital and physical audience locations. A focus on LGBTQ festivals and on issues relating to LGBTQ experience in both countries allows for the consideration of issues such as ageing, sense of community and isolation, affiliation and investment, and the representation of issues affecting trans people. The book examines films that chronicle the local, national and sub-national identities while also addressing foreign audiences. It draws on a large sample of individual responses through post-screening questionnaires and focus groups as well as on the work of professional film critics and on-line commentators.

Volunteering in hospice and palliative care in the United Kingdom

2018 ◽  
Author(s):  
Ros Scott
Keyword(s):  
Palliative Care ◽  
United Kingdom ◽  
Care Services ◽  
The United Kingdom ◽  
Strategic Direction ◽  
Palliative Care Services ◽  
History Of ◽  
The Uk ◽  
Hospice And Palliative Care ◽  
Changing Role

This chapter explores the history of volunteers in the founding and development of United Kingdom (UK) hospice services. It considers the changing role and influences of volunteering on services at different stages of development. Evidence suggests that voluntary sector hospice and palliative care services are dependent on volunteers for the range and quality of services delivered. Within such services, volunteer trustees carry significant responsibility for the strategic direction of the organiszation. Others are engaged in diverse roles ranging from the direct support of patient and families to public education and fundraising. The scope of these different roles is explored before considering the range of management models and approaches to training. This chapter also considers the direct and indirect impact on volunteering of changing palliative care, societal, political, and legislative contexts. It concludes by exploring how and why the sector is changing in the UK and considering the growing autonomy of volunteers within the sector.

scholarly journals Military and demographic predictors of mental ill-health and socioeconomic hardship among UK veterans

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
H. Burdett ◽  
N. T. Fear ◽  
S. Wessely ◽  
R. J. Rona
Keyword(s):  
Socioeconomic Status ◽  
Common Mental Disorders ◽  
Economic Status ◽  
Childhood Adversity ◽  
Armed Forces ◽  
Sociodemographic Factors ◽  
Post Traumatic Stress ◽  
Length Of Service ◽  
Socioeconomic Outcomes ◽  
The Uk

Abstract Background Around 8% of the UK Armed Forces leave in any given year, and must navigate unfamiliar civilian systems to acquire employment, healthcare, and other necessities. This paper determines longer-term prevalences of mental ill health and socioeconomic outcomes in UK Service leavers, and how they are related to demographic factors, military history, and pre-enlistment adversity. Methods This study utilised data from a longitudinal sample of a cohort study UK Armed Forces personnel since 2003. A range of self-reported military and sociodemographic factors were analysed as predictors of probable Post-Traumatic Stress Disorder, common mental disorders, alcohol misuse, unemployment and financial hardship. Prevalences and odds ratios of associations between predictors and outcomes were estimated for regular veterans in this cohort. Results Veteran hardship was mostly associated with factors linked to socio-economic status: age, education, and childhood adversity. Few military-specific factors predicted mental health or socio-economic hardship, except method of leaving (where those leaving due to medical or unplanned discharge were more likely to encounter most forms of hardship as veterans), and rank which is itself related to socioeconomic status. Conclusion Transition and resettlement provisions become increasingly generous with longer service, yet this paper shows the need for those services becomes progressively less necessary as personnel acquire seniority and skills, and instead could be best targeted at unplanned leavers, taking socioeconomic status into consideration. Many will agree that longer service should be more rewarded, but the opposite is true if provision instead reflects need rather than length of service. This is a social, political and ethical dilemma.

scholarly journals National survey of feasibility of NIV trials for management of children with bronchiolitis

2020 ◽  
Vol 4 (1) ◽  
pp. e000780
Author(s):  
Anna Rosala-Hallas ◽  
Ashley P Jones ◽  
Emma Bedson ◽  
Vanessa Compton ◽  
Ricardo M Fernandes ◽  
...  
Keyword(s):  
National Survey ◽  
Controlled Trial ◽  
Management Strategies ◽  
Eligibility Criteria ◽  
Training Requirements ◽  
Non Invasive Ventilation ◽  
Respiratory Management ◽  
Randomised Controlled ◽  
The Uk ◽  
Future Work

BackgroundBronchiolitis is a major cause of admission to hospital in children. Non-invasive ventilation (NIV) support with continuous positive airway pressure (CPAP) or high-flow nasal cannula (HFNC) oxygen is routinely used for infants in the UK with bronchiolitis.ObjectiveTo establish UK paediatric practice regarding management of bronchiolitis, and to explore issues pertinent to the design of a potential future randomised controlled trial of NIV.DesignScreening logs were completed in hospitals in England capturing information on paediatric bronchiolitis admissions. An online national survey of clinical practice was disseminated to healthcare professionals (HCPs) across the UK to ascertain current management strategies.ResultsScreening logs captured data on 393 infants from 8 hospitals. Reasons for admission were most commonly respiratory distress and/or poor fluid intake. Oxygen was administered for 54% of admissions. Respiratory (CPAP and HFNC) and non-respiratory support administered varied considerably. The national survey was completed by 111 HCPs from 76 hospitals. Data were obtained on criteria used to commence and wean NIV, responsibilities for altering NIV settings, minimum training requirements for staff managing a child on NIV, and numbers of trained staff. Most centres were interested in and capable of running a trial of NIV, even out of normal office hours.ConclusionsRespiratory and non-respiratory management of bronchiolitis in UK centres varies widely. A trial of HFNC oxygen therapy in this group of patients is feasible and HCPs would be willing to randomise patients into such a trial. Future work should focus on defining trial eligibility criteria.

Pilot study for cystic fibrosis neonatal screening: the Cuban experience

2020 ◽  
Vol 58 (11) ◽  
pp. 1857-1864
Author(s):  
Elisa M. Castells ◽  
Aramis Sánchez ◽  
Amarilys Frómeta ◽  
Yanin Mokdse ◽  
Nelson Ozunas ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Screening Program ◽  
Dried Blood Spots ◽  
Enzyme Linked Immunosorbent Assay ◽  
Perinatal Factors ◽  
Screening Process ◽  
Unequal Variance ◽  
National Network ◽  
Two Samples ◽  
The Mean

AbstractBackgroundIn Cuba, no screening program for cystic fibrosis (CF) has been implemented yet. The ultramicro enzyme-linked immunosorbent assay (UMELISA)® TIR NEONATAL has been developed for the measurement of immunoreactive trypsin (IRT) in dried blood spots on filter paper. The analytical performance of the kit was evaluated in the national network of laboratories.MethodsNewborn dried blood samples (DBS) were evaluated in 16 laboratories. An IRT/IRT/DNA protocol was followed using a cut-off value of 50 ng/mL. The mean, median and percentiles of the distribution were calculated and a two-sample t-test with unequal variance was used for statistical analysis. Influence of perinatal factors on IRT levels was analyzed.ResultsFrom January to June 2018, 6470 newborns were studied, obtaining a mean IRT value of 12.09 ng/mL (ranging 0–358 ng/mL) and a median of 8.99 ng/mL. Fifty-two samples (0.78%) were above the cut-off level and 16 samples (0.24%) were elevated in the re-screening process. One of them was confirmed positive by molecular biology (phe508del/c.3120 + 1G > A), constituting the first newborn screened and diagnosed early in Cuba. Second DBS samples were collected on average at 14 days and processed in the laboratory at 16 days of birth. Significant differences were observed (p < 0.05) when evaluating the influence of gender, birth weight (BW) and gestational age (GA) on the IRT values. Lower IRT concentrations were found in samples processed after 10 days of collection.ConclusionsThe performance of UMELISA® TIR NEONATAL in the laboratories has been satisfactory; hence CF newborn screening (NBS) was extended throughout the country from January 2019.

scholarly journals A qualitative exploration of patients’ experiences, needs and expectations regarding online access to their primary care record

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044221
Author(s):  
Brian McMillan ◽  
Gail Davidge ◽  
Lindsey Brown ◽  
Moira Lyons ◽  
Helen Atherton ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Groups ◽  
Negative Consequences ◽  
Face To Face ◽  
Primary Care Record ◽  
Online Access ◽  
Additional Support ◽  
The Uk ◽  
Records Access ◽  
Qualitative Exploration

ObjectivesPrimary care records have traditionally served the needs and demands of clinicians rather than those of the patient. In England, general practices must promote and offer registered patients online access to their primary care record, and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access to their record. This study explored what patients and carers want from online access to their electronic primary care health record, their experiences of using it, how they would like to interact with their record and what support they may need.DesignFocus groups and semistructured interviews using purposive sampling to achieve a good sociodemographic spread. Interviews were digitally audiorecorded, transcribed and coded using an established thematic approach.SettingFocus groups and interviews were conducted in community settings in the UK.ParticipantsFifty-four individuals who were either eligible for the National Health Service Health Check, living with more than one long-term condition or caring for someone else.ResultsParticipants views regarding online access were categorised into four main themes: awareness, capabilities, consequences and inevitability. Participants felt online access should be better promoted, and suggested a number of additional functions, such as better integration with other parts of the healthcare system. It was felt that online access could improve quality of care (eg, through increased transparency) but also have potential negative consequences (eg, by replacing face to face contact). A move towards more online records access was considered inevitable, but participants noted a need for additional support and training in using the online record, especially to ensure that health inequalities are not exacerbated.ConclusionsDiscussions with patients and carers about their views of accessing online records have provided useful insights into future directions and potential improvements for this service.

Staying strong: Exploring experiences of managing emotional distress for African Caribbean women living in the UK

2021 ◽  
Vol 31 (1) ◽  
pp. 140-159 ◽  
Author(s):  
Rachel Graham ◽  
Victoria Clarke
Keyword(s):  
Focus Groups ◽  
Black Woman ◽  
Emotional Distress ◽  
Emotional Wellbeing ◽  
Strong Black Woman ◽  
Caribbean Women ◽  
African Heritage ◽  
Women's Experience ◽  
African Caribbean ◽  
The Uk

The “strong Black woman” (SBW) is a Western cultural stereotype that depicts African-heritage women as strong, self-reliant, independent, yet nurturing and self-sacrificing. US research indicates that this stereotype negatively impacts the emotional wellbeing of African-heritage women, while also allowing them to survive in a racist society. UK research has documented the significance of this stereotype in relation to African Caribbean women’s experience of depression around the time of childbirth and “attachment separation and loss”. However, research is yet to explore how UK African Caribbean women make sense of and negotiate the SBW stereotype in relation to their emotional wellbeing more broadly. Using five focus groups, with a total of 18 women, this research explored how these women experienced and managed emotional distress in relation to the SBW stereotype. The importance of “being strong” consistently underpinned the participants’ narratives. However, this requirement for strength often negatively impacted their ability to cope effectively with their distress, leading them to manage it in ways that did little to alleviate it and sometimes increased it. This study offers important implications for understanding the experiences of emotional distress for UK African Caribbean women.

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