National Institute of Health Research

HS&DR - 12/5001/43: Quality improvement in cystic fibrosis: What can we learn from each other?

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Project title Quality improvement in cystic fibrosis: What can we learn from each other?
Research type Evidence Synthesis
Status Research in progress
Start date June 2013
Publication date

June 2017

This is the estimated publication date for this report, but please note that delays in the editorial review process can cause the forecast publication date to be delayed.

Cost £ 243,165.13
Chief Investigator Dr Stephanie MacNeill
Co-investigators Dr Diana Bilton (Royal Brompton & Harefield NHS Foundation Trust), Dr Jonathan Boote (University of Sheffield), Ms Katherine Collins (NHS National Services Scotland), Professor Paul Cullinan (Imperial College London), Dr Caroline Elston (King's College Hospital NHS Foundation Trust), Professor Mohammed Mohammed (University of Bradford), Ms Joanne Osmond (Patient Engagement and Advocacy Services (P.E.A.S) Ltd), Dr Martin Wildman (Sheffield Teaching Hospitals NHS Foundation Trust), Dr Siobhan Carr (Royal Brompton & Harefield NHS Foundation Trust), Mr Steven Harrison (Sheffield Teaching Hospitals NHS Foundation Trust)
Contractor Royal Brompton & Harefield NHS Foundation Trust
Plain English summary Cystic fibrosis (CF) is a genetic condition affecting approximately 9000 people in the UK. CF damages the lungs which are at risk from infection and the digestive system where food is poorly absorbed. There are many treatments, but long-term health requires patients to be monitored closely by a multi-disciplinary team of doctors, nurses, physiotherapists and dieticians. Care is delivered in specialised paediatric and adult centres across the country and each provides information about their patients to the CF Registry. Every year this information is published by the CF Trust, the national UK charity for CF. The reports describe the health of patients in the UK that year as well as provide comparisons between the different specialist centres. Currently, the centre comparisons simply show how centres rank on nutrition and respiratory outcomes. While this gives the reader a sense of the variability between centres, they falsely give the impression that the top ranked centre gives the best care and the bottom care the worst . This is misleading for two reasons: 1. Rankings make no allowances for differences in the intake of patients. There are many things that affect a patient s outcomes in CF that are not related to their current care. This includes their genotype, how old they were when they were diagnosed and the infections they would have already acquired before arriving at their centre. It would therefore be inappropriate to compare centres without taking these factors into account. 2. The rankings make no formal statistical comparisons between centres. Without statistical comparisons we can t say that there is evidence that outcomes are better at one centre than another. It may be, for example, that the differences observed are simply due to chance. As well as being misleading, these comparisons also fail to offer any explanation of why outcomes might be better in one place than another. Without this information it is impossible for centres to learn from each other and improve. Acknowledging these flaws in the current comparisons, patients, the centres and those who commission care have said they want to learn whether there are important differences between centres. Our project aims to answer this and, if differences are found, we will identify what makes some centres successful so that all can learn and improve the quality of care delivered. To do this, we have assembled a diverse expert team of specialist CF doctors, health care researchers and representatives of the CF Trust and care commissioners. This work falls in 5 steps: STEP 1: To understand how centres differ, and to know whether it is just by chance, careful data analysis is required. Using information collected on the CF Registry, we will study the respiratory and nutritional health of children and adults to work out whether there are real differences between centres. Our analyses will aim to adjust for patient intake as well as use appropriate statistical methods for making comparisons. Our team includes researchers trained in statistics as well as institutional comparisons in the NHS. Using routinely collected data from the CF Trust offers better value than collecting new information from patients which would be expensive and time-consuming. We will also focus our work on the health outcomes that CF clinicians have suggested are important for patients health. STEP 2: To know what we should be looking for when we look at the care delivered at centres we will consult with a group of CF experts comprising of clinical consultants, nurses, dieticians, physiotherapists and psychologists. In these discussions we aim to identify the kinds of processes, policies and structures of care that would be responsible for delivering high quality outcomes. We will also ask these experts what are the factors that could help or hinder these processes, policies and structures. We will then consult with patients to ask them what they think makes a good centre. STEP 3: We will collect information from every centre on how they deliver care to patients. The questions asked will be based in part on what the experts in step 2 think are important in delivering quality care. STEP 4: Once we know how the centres compare on health outcomes and we know how they deliver care, we can try to work out what is responsible for better outcomes in some centres and poorer outcomes in others. This will involve looking at what we find in steps 1, 2 and 3 as well as visiting some of the centres. The visits will incorporate discussions with the CF care team as well as asking patients for their perspective on the care they receive. Step 5: We will share our results with patients, the specialist centres and those who commission care. Based on these results, centres can to make informed decisions on how to improve their services. Additionally, care commissioners can focus investment in areas that are likely to improve patient outcomes. This is particularly important since there will be key changes in how CF care is commissioned in the UK from 2013 with national specifications for care delivery which can be influenced in future by this research. Outside the CF community, we will share our results so that other parts of the NHS can learn from our example to improve their own services.
Scientific summary BACKGROUND Cystic Fibrosis (CF) is a common genetic disease affecting approximately 9000 patients in the UK (1). The genetic mutation results in defective chloride conductance which, in the lung, leads to mucus obstruction and infection (2). Organs such as the liver, intestines and pancreas are also affected (3) leading to poor nutrient absorption and malnutrition. The prognosis for patients with CF has improved dramatically and the median predicted survival for UK patients reached 38 years (1). Patients are treated at specialist adult and paediatric centres. Transition to adult care usually occurs at age 16. The CF Trust the national UK charity for CF - maintains a national registry of detailed clinical and demographic data on all patients attending these centres. Patients are invited to attend annual reviews and based on these data the Trust produces annual reports which are publicly available. Since 2008 these reports included comparisons between centres on key clinical outcomes using simple rankings. While giving a sense of the distribution of outcomes between centres, they encourage the reader to assume that centres with the highest lung function measures are better than those with lower values. This is misleading because: 1. Rankings make no allowances for differences in the patient case mix. It could be argued, for example, that centres with younger patients would have improved lung function compared to centres with older patients since lung function declines with age (1). Adjusting for the patient mix is therefore important when comparing centres. 2. Rankings include no formal tests comparing centres. Without formal comparisons we cannot say that there is evidence that outcomes are better at one centre than another let alone conclude that any observed differences are related to the process of care. AIM Our aim is to avoid the inappropriate interpretation of league tables and adopt a more systematic and scientific method based on "statistical process control" (SPC) to identify exceptional CF care services in terms of clinically meaningful outcomes. This approach has been adopted in other areas including the monitoring of general practice mortality rates (4). PLAN The proposed research will involve: 1. Centre comparisons using annual review data. Using annual review data (2007-2011), we will extract lung function (FEV1) and body mass index data on patients aged 12-21. To avoid attributing differences to un-modifiable factors such as age and sex, outcomes will be adjusted for the patient case mix at that centre. Then, SPC charts will be generated for each outcome to compare centres. These charts offer simple comparisons between centres whereby centres exhibiting variability outside the process under study are easily identifiable. 2. Consultation on effective processes. Starting with the current CF care guidelines (5), we will consult with a multi-disciplinary group of CF experts to understand the range of structures, policies and processes (SPP) used to translate the care guidelines into working practice. Through this we will produce SPP maps that help visualise the important determinants of good quality outcomes. Focus groups with these experts will identify the range of barriers and facilitators that hinder or support the implementation of these SPPs in clinical practice. We will then conduct a focus group with patients to determine what patients feel are the important processes for delivering quality care. 3. Describe current care structures. We will quantify current and past SPPs at individual centres using a questionnaire sent to all centre directors. The questionnaires will incorporate both quantitative and qualitative components based, in part, on the outcome of the SPP maps and focus groups in step 2. 4. Identify the processes that differ between centres. Where meaningful differences are identified in step 1, we aim to understand the explanations for these differences. This will involve comparative analyses of the data on the SPPs in centres collected in step 3. These results will then provide a starting point for discussions with a sample of individual centres covering outlying (both positive and negative) and average performing centres. In these discussions informed by the SPP maps and the information from the centre questionnaires we will seek to understand the SPPs associated with the centre s performance. Additionally, we will also conduct questionnaire surveys of patients at a sample of individual centres in order to gain the patients perspective on the care they receive. 5. Dissemination. Our results will be disseminated to all stakeholder groups. Support from the CF Trust will be provided to centres who wish to improve or alter their processes of care based on the findings of the study. BENEFITS There are many benefits of this work and the methods we aim to use. Firstly, we will be making valid and meaningful comparisons which are easily interpreted. Secondly, for centres to improve it is valuable to identify outstanding centres and learn from what they are doing. Importantly, our methods looking at failures in processes as opposed to poor performance and offering support where needed ensures a non-threatening environment for the centres themselves (6). Finally, this work will provide the opportunity for NHS service commissioners to learn from successful centres and to focus investment in the areas likely to yield improvements in outcomes. REFERENCES 1. CF Trust. UK CF Registry Annual Data Report 2009. London: 2011 2. Ratjen FA. Cystic fibrosis: pathogenesis and future treatment strategies. Respiratory care. 2009;54(5):595-605 3. Davis PB. Cystic fibrosis since 1938. American journal of respiratory and critical care medicine. 2006;173(5):475-82 4. Mohammed MA, Booth K, Marshall D, et al. A practical method for monitoring general practice mortality in the UK: findings from a pilot study in a health board of Northern Ireland. The British journal of general practice : the journal of the Royal College of General Practitioners. 2005;55(518):670-6 5. CF Trust. Standards for the Clinical Care of Children and Adults with Cystic Fibrosis. London: Cystic Fibrosis Trust, 2011 6. Lilford R, Mohammed MA, Spiegelhalter D, et al. Use and misuse of process and outcome data in managing performance of acute medical care: avoiding institutional stigma. The Lancet. 2004; 363(9415):1147-54

Specification Document (PDF File - 30.8 KB)

Protocol (PDF File - 731.5 KB)


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