Title: Quality improvement in cystic fibrosis: What can we learn from each other?
Funder: Department of Health (England)

Abstract: BACKGROUNDCystic 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.AIMOur 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).PLANThe 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.REFERENCES1. CF Trust. UK CF Registry Annual Data Report 2009. London: 20112. Ratjen FA. Cystic fibrosis: pathogenesis and future treatment strategies. Respiratory care. 2009;54(5):595-6053. Davis PB. Cystic fibrosis since 1938. American journal of respiratory and critical care medicine. 2006;173(5):475-824. 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):670-65. CF Trust. Standards for the Clinical Care of Children and Adults with Cystic Fibrosis. London: Cystic Fibrosis Trust 20116. 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


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CONGENITAL DISORDERS