Unrelated Cord Blood Transplantation in adults: evolution, experience and long-term outcomes in the UK National Health Service : a retrospective analysis on behalf of the British Society of Blood and Marrow Transplantation and Eurocord

2015 ◽  
Vol 172 (3) ◽  
pp. 478-481
Author(s):  
John A. Snowden ◽  
Robert Danby ◽  
Annalisa Ruggeri ◽  
David I. Marks ◽  
Rachael E. Hough ◽  
...  
Keyword(s):  
National Health Service ◽  
Cord Blood Transplantation ◽  
British Society ◽  
Long Term Outcomes ◽  
Blood And Marrow Transplantation ◽  
Blood Transplantation ◽  
Unrelated Cord Blood ◽  
Uk National Health Service ◽  
The Uk

Unrelated Cord Blood Transplantation (UCBT) In Adults In The UK: Evolution, Experience and Outcomes. A Retrospective Analysis On Behalf Of The British Society of Blood and Marrow Transplantation (BSBMT) and Eurocord

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 3394-3394
Author(s):  
John A Snowden ◽  
Robert Danby ◽  
Annalisa Ruggeri ◽  
David I Marks ◽  
Rachael E Hough ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Cord Blood ◽  
Marrow Transplantation ◽  
Cord Blood Transplantation ◽  
Conditioning Regimen ◽  
National Guidelines ◽  
Blood And Marrow Transplantation ◽  
Blood Transplantation ◽  
Unrelated Cord Blood ◽  
The Uk

Abstract In the UK, unrelated cord blood transplantation (UCBT) has been used increasingly in adults since 2000. National guidelines were published in 2009 (Shaw et al, 2009) and two national prospective clinical trials have been established (EUDRACT registrations; RIC 2004-003845-41 and MAC 2009-011818-21). However, national trends and outcomes have never been comprehensively appraised. We have therefore analysed the demographic data and outcomes in adults (>18 years) undergoing UCBT in 23 UK transplant centres from 2000-2012 using the BSBMT and Eurocord databases. From the first adult UCBT in 2000 to the end of 2102 there were a total of 176 centre UCBT registrations with corresponding cord blood bank data, including 28 patients in the national prospective clinical trials which have been excluded from any further analysis. Outcomes were analysed for 148 patients with a median age of 40.8 (range 18-72) years, with acute leukaemia (n=80), myeloproliferative disorders/myelodysplastic syndrome (MDS) (n=43), lymphoproliferative diseases (n=20) or bone marrow failure (n=5). Half the activity was between 2000-2008 and half between 2009-2012, reflecting a greater than doubling of activity in recent years. Various conditioning regimens were used, with the majority receiving a reduced intensity conditioning regimen. Most patients (72%) received double cord blood units (dCBU) and the remainder a single CBU. Recorded median total cell dose infused was 3.61 x107/kg (range 0.41-34.35) for total nucleated cell count (TNC) and 1.69 x105/kg (range 0.13-14.97) for CD34+ cells. Engraftment of neutrophils to >0.5 x109/L occurred at a median of 22 (range 3-52) days and platelets to >20 x109/L at a median of 39 (range 10-117) days. Overall survival at 1 year was 46.4% (CI 38.8-55.5%) and 2 years was 40% (CI 32-49%), with an overall median survival of 27.1 (range 3.2-83.7) months. The incidence of grade II to IV acute graft-versus-host disease (GVHD) was 17.6% (CI 11.5-24.8%) and chronic GVHD at 1 year was 11.4% (CI 6.7-17.6%). In patients treated for malignant disease with remission status available (n=137), cumulative incidence of relapse was 11.0% (CI 6.4-16.9%) at 100 days and 24.6% (CI 17.5-32.4%) at 1 year, and treatment related mortality was 22.6% (CI 16.0-30.0%) at 100 days and 34.6% (CI 26.5-42.7%) at 1 year. In univariate analysis, overall survival (OS) at 2 years was strongly related to stage of disease; 54% for early (CR1, chronic phase, MDS subtype-RA, good remission) versus 47% for intermediate (CR2, accelerated phase, MDS transformation, PR) versus 21% for advanced (non-remission, other subtypes of MDS) (p=0.0001). There was no impact of gender, age, diagnosis, intensity of conditioning regimen, use of serotherapy in the conditioning regimen, CBU number, TNC or CD34+ dose, HLA or ABO matching, or year of UCBT (2000-08 versus 2009-12) on OS. In a subgroup analysis of acute leukaemia, the relationship between 2 year OS and disease status was stronger; 60% for early versus 43% for intermediate versus 0% for advanced (p=0.000008), with improved survival outcomes with the use of dCBU over single unit UCBT (50% vs 34%), although this did not achieve significance (p=0.15). This retrospective national analysis supports the evolution of UCBT as an effective treatment in adults without an otherwise available donor. Outcomes are comparable to similar patient groups treated with unrelated blood and marrow transplantation. The best outcomes are achieved in early and intermediate risk disease. The benefit of national guidelines is supported by more than doubling of activity since publication in 2009 without deterioration in outcomes. Whether the national prospective clinical trials will deliver improved UK outcomes will be determined following initial analysis in 2014. Reference Shaw BE, et al. Recommendations for a standard UK approach to incorporating umbilical cord blood into clinical transplantation practice: conditioning protocols and donor selection algorithms. Bone Marrow Transplantation 2009;44:7-12 Disclosures: Gluckman: Cord use: Honoraria; gamida: Honoraria.

Using Technology to Empower People With Multiple Sclerosis (MS) to Make Shared Decisions About Managing Their Own Healthcare

2020 ◽  
pp. 177-198
Author(s):  
Helen King ◽  
Darina M. Slattery
Keyword(s):  
Multiple Sclerosis ◽  
National Health Service ◽  
Health Information ◽  
Digital Health ◽  
Health Conditions ◽  
Digital Information ◽  
Uk National Health Service ◽  
The Uk ◽  
Information Providers

In 2014, the UK National Health Service (NHS) ‘Five Year Forward View' plan set out key objectives to reform the NHS, which included empowering the population as a whole (particularly those with long-term health conditions) to take more responsibility for managing their own healthcare and introducing initiatives to use technology to improve services and reduce costs. The “Long Term Plan” explains how the 2014 initiatives will be further developed. This chapter presents a review of literature on digital health information and information usability. It presents the key findings from a mixed methods study that explored how people with MS (PwMS) access and use health digital information when trying to manage their MS. While the study found that there is much good quality digital health information available for PwMS, and that this facilitates shared decisions, some necessary information is still missing. The chapter concludes with recommendations for digital health information providers.

scholarly journals Evaluating Quality Improvement at Scale: Design Considerations for Routine Reporting to Executive Board of a Healthcare Organisation in the UK National Health Service

2020 ◽  
Author(s):  
Kia-Chong Chua ◽  
Claire Henderson ◽  
Barbara Grey ◽  
Michael Holland ◽  
Nick Sevdalis
Keyword(s):  
National Health Service ◽  
Health Service ◽  
National Health ◽  
Healthcare Organisation ◽  
Retrospective Evaluation ◽  
Executive Board ◽  
Project Outcomes ◽  
Uk National Health Service ◽  
The Uk

Abstract BackgroundQuality improvement (QI) in healthcare is a cultural transformation process that requires long-term commitment from the executive board, a critical theme in emerging accounts of QI success in the UK National Health Service (NHS). To help sustain long-term commitment from the executive board, an organisation-wide picture of QI applications and their impact needs to be made routinely visible.MethodWe developed a retrospective evaluation drawing inputs from the resident QI team of a healthcare organisation and academic colleagues in the field of implementation and improvement science, as well as peer-reviewed and grey literature on what constitutes success for QI in healthcare. Formative feedback on content relevance, acceptability, and feasibility issues were used to guide evaluation design. The evaluation was conducted as an online survey so that the data accrual process resembles routine reporting to help surface implementation challenges. A purposive sample of QI projects was identified to maximise contrast between projects that were or were not successful as determined by the resident QI team. To hone strategic focus in what should be reported, we also compared factors that might affect project outcomes. For understanding implementation issues, we reviewed data quality to surface challenges in the design and sustainability of routine reporting for the executive board.ResultsOut of 52 QI projects, 10 led to a change in routine practice (henceforth referred to as adoption). Details of project outcomes were limited. Project team outcomes, indicative of capacity building, were not systematically documented. Service user involvement, quality of measurement plan, fidelity and documentation of plan-do-study-act (PDSA) cycles had a major impact on adoption. The proximal impact of these process factors on adoption was consistently more apparent than the distal impact of input and contextual factors.ConclusionsDesigning a routine reporting framework is an iterative process involving continual dialogue with frontline staff and improvement specialists to navigate data accrual demands. A retrospective evaluation, as in this study, can yield empirical insights for dialogue about the routine visibility of QI applications and their organisation-wide impact, thereby honing the implementation science of QI in a healthcare organisation.

scholarly journals Evaluating quality improvement at scale: design considerations for routine reporting to executive board of a healthcare organisation in the UK National Health Service

2020 ◽  
Author(s):  
Kia-Chong Chua ◽  
Claire Henderson ◽  
Barbara Grey ◽  
Michael Holland ◽  
Nick Sevdalis
Keyword(s):  
Quality Improvement ◽  
National Health Service ◽  
Health Service ◽  
Healthcare Organisation ◽  
Retrospective Evaluation ◽  
Executive Board ◽  
Project Outcomes ◽  
Uk National Health Service ◽  
The Uk

Abstract Background Quality improvement (QI) in healthcare is a cultural transformation process that requires long-term commitment from the executive board, a critical theme in emerging accounts of QI success in the UK National Health Service (NHS). To help sustain long-term commitment from the executive board, an organisation-wide picture of QI applications and their impact needs to be made routinely visible.Method We developed a retrospective evaluation drawing inputs from the resident QI team of a healthcare organisation and academic colleagues in the field of implementation and improvement science, as well as peer-reviewed and grey literature on what constitutes success for QI in healthcare. Formative feedback on content relevance, acceptability, and feasibility issues were used to guide evaluation design. The evaluation was conducted as an online survey so that the data accrual process resembles routine reporting to help surface implementation challenges. A purposive sample of QI projects was identified to maximise contrast between projects that were or were not successful as determined by the resident QI team. To hone strategic focus in what should be reported, we also compared factors that might affect project outcomes. For understanding implementation issues, we reviewed data quality to surface challenges in the design and sustainability of routine reporting for the executive board.Results Out of 52 QI projects, 10 led to a change in routine practice (henceforth referred to as adoption). Details of project outcomes were limited. Project team outcomes, indicative of capacity building, were not systematically documented. Service user involvement, quality of measurement plan, fidelity and documentation of plan-do-study-act (PDSA) cycles had a major impact on adoption. The proximal impact of these process factors on adoption was consistently more apparent than the distal impact of input and contextual factors.Conclusions Designing a routine reporting framework is an iterative process involving continual dialogue with frontline staff and improvement specialists to navigate data accrual demands. A retrospective evaluation, as in this study, can yield empirical insights for dialogue about the routine visibility of QI applications and their organisation-wide impact, thereby honing the implementation science of QI in a healthcare organisation.

Using Technology to Empower People With Multiple Sclerosis (MS) to Make Shared Decisions About Managing Their Own Healthcare

2021 ◽  
pp. 645-666
Author(s):  
Helen King ◽  
Darina M. Slattery
Keyword(s):  
Multiple Sclerosis ◽  
National Health Service ◽  
Health Information ◽  
Digital Health ◽  
Health Conditions ◽  
Digital Information ◽  
Uk National Health Service ◽  
The Uk ◽  
Information Providers

In 2014, the UK National Health Service (NHS) ‘Five Year Forward View' plan set out key objectives to reform the NHS, which included empowering the population as a whole (particularly those with long-term health conditions) to take more responsibility for managing their own healthcare and introducing initiatives to use technology to improve services and reduce costs. The “Long Term Plan” explains how the 2014 initiatives will be further developed. This chapter presents a review of literature on digital health information and information usability. It presents the key findings from a mixed methods study that explored how people with MS (PwMS) access and use health digital information when trying to manage their MS. While the study found that there is much good quality digital health information available for PwMS, and that this facilitates shared decisions, some necessary information is still missing. The chapter concludes with recommendations for digital health information providers.

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