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Sickle cell disease (SCD) is an inherited blood disorder which may result in a broad range of complications including recurring and severe episodes of pain--sickle 'crises'--which require frequent hospitalizations. We assessed the cost of hospitalizations associated with SCD with crisis in England.Hospital Episodes Statistics data for all hospital episodes in England between 2010 and 2011 recording Sickle Cell Anaemia with Crisis as primary diagnosis were used. The total cost of admissions and exceeded length of stay due to SCD were assessed using Healthcare Resource Groups tariffs. The impact of patients' characteristics on SCD admissions costs and the likelihood of incurring extra bed days were also examined.In 2010-11, England had 6077 admissions associated with SCD with crisis as primary diagnosis. The total cost for these admissions for commissioners was £18,798 255. The cost of admissions increases with age (children admissions costs 50% less than adults). Patients between 10 and 19 years old are more likely to stay longer in hospital compared with others.SCD represents a significant cost for commissioners and the NHS. Further work is required to assess how best to manage patients in the community, which could potentially lead to a reduction in hospital admissions and length of stay, and their associated costs.

Sickle cell disease (SCD) is a cause of frequent emergency readmissions. We examined trends in SCD emergency readmissions and inpatient mortality in England in relation to socio-economic status.Data from Hospital Episode Statistics were extracted for all SCD patients admitted in 2005/06. The financial year 2005/06 was taken as the index year for analysis. We calculated readmission rates and inpatient mortality for patients admitted with a primary or secondary diagnosis of sickle cell anaemia with crisis and without crisis in the index year during the subsequent 5 years (2006/07-2010/11). Charlson Score was used to measure comorbidity. Using Cox proportional hazards models, we also examined the relationship between patient characteristics and both emergency readmissions and inpatient mortality.In 2005/06, there were 7679 SCD index admissions. Over the subsequent 5-year period, patients living in the most socio-economically deprived areas were at highest risk of readmission (54.2% readmitted over the study period compared with 28% of the least deprived group). Inpatient mortality amongst readmissions was highest in patients living in the most deprived areas [hazard ratio (HR) 2.34, 95% CI 1.41-3.90].SCD patients from the most socio-economically deprived areas and with comorbidities are at highest risk of both SCD readmissions and in-hospital mortality, suggesting that there are inequalities in healthcare access and health outcomes amongst people with SCD.

Objectives To implement an identification and brief advice (IBA) intervention to detect low-risk/hazardous alcohol consumption. Design Implementation was guided through the use of quality improvement tools and training. Setting This study was conducted over an 18-month period from April 2010 to September 2011 on a 42-bed acute medical unit at a central London acute hospital. Participants All medical patients over the age of 18 admitted to the acute assessment unit were eligible; any patient unable to provide a medical history either through language barriers or due to illness was excluded. Main outcome measures Percentage of medical patients admitted each week to the acute assessment unit who were screened for low-risk/hazardous alcohol consumption. Results Weekly data were analysed in time series run charts and cross-referenced to the date of educational sessions and their effect on the uptake of screening monitored. A demonstrable change in the mean percentage number of patients screened was observed in different time periods, 67.3–80.1%, following targeted teaching on the AAU. Conclusions Our study demonstrates the successful use of quality improvement methodology to guide the implementation of Alcohol Use Disorders Identification Test-Consumption (AUDIT-C), an IBA intervention, in the acute medical setting. The incorporation of the AUDIT-C into an admission document has been well accepted by the junior doctors, attaining an average (mean) of 80% of patients being screened using the tool. Targeted teaching of clinical staff involved in admitting patients appears to be the most effective method in improving uptake of IBA by junior doctors.

OBJECTIVES: To determine how patients with sickle cell disease (SCD) perceive the quality of care that they receive from their primary healthcare providers. DESIGN: A questionnaire-based pilot study was used to elicit the views of patients about the quality of care they have been receiving from their primary healthcare providers and what they thought was the role of primary care in SCD management. SETTING: Sickle Cell Society and Sickle Cell and Thalassaemia Centre, in the London Borough of Brent. PARTICIPANTS: One hundred questionnaires were distributed to potential participants with SCD between November 2010 and July 2011 of which 40 participants responded. MAIN OUTCOME MEASURES: Analysis of 40 patient questionnaires collected over a nine-month period. RESULTS: Most patients are generally not satisfied with the quality of care that they are receiving from their primary healthcare providers for SCD. Most do not make use of general practitioner (GP) services for management of their SCD. Collecting prescriptions was the reason most cited for visiting the GP. CONCLUSION: GPs could help improve the day-to-day management of patients with SCD. This could be facilitated by local quality improvement schemes in areas with high disease prevalence. The results of the survey have been used to help develop a GP education intervention and a local enhanced service to support primary healthcare clinicians with SCDs ongoing management.

Background Sickle cell disease (SCD) is a rising cause of mortality and morbidity in England and consequently an important policy issue for the National Health Service. There has been no previous study that has examined SCD admission rates in England. Methods Data from Hospital Episode Statistics were analysed for all hospital episodes (2001/10) in England with a primary diagnosis of sickle cell anaemia with crisis (D57.0) or without crisis (D57.1). Secondary and tertiary diagnoses were examined among those patients admitted with either of these codes as their primary diagnosis. Results The overall SCD admission rate per 100 000 has risen from 21.2 in 2001/02 to 33.5 in 2009/10, a rise of over 50%. London accounts for 74.9% of all SCD admissions in England. 57.9% of patients admitted are discharged within 24 h. The largest rise in admission rates was seen among males aged 40-49 years where admission rates per 100 000 increased from 7.6 to 26.8 over the study period. Conclusions Our data show that SCD admissions are rising in England, particularly in London. Over half of patients admitted with SCD were discharged within 24 h, suggesting that some of these admissions could be prevented through better ambulatory care of patients.

We report the results of a Phase I/II dose escalation study to determine the maximum tolerated dose (MTD) of cyclophosphamide when combined with lenalidomide and dexamethasone in relapsed/refractory myeloma. Thirty-one patients were enrolled in cohorts of 3, at five dose levels of cyclophosphamide to a maximum of 700 mg on days 1 and 8 of a 28-d cycle. Patients received lenalidomide 25 mg days 1-21 and dexamethasone 20 mg orally days 1-4 and 8-11. The MTD was 600 mg cyclophosphamide, days 1 and 8. Grade 3/4 haematological complications occurred in 26% of patients, grade 3/4 infection in 3% (both at 700 mg cyclophosphamide), with thromboembolic complications in 6% of patients. Overall complete response (CR) rate was 29%, very good partial response rate 7% and partial response rate 45% giving an overall response rate of 81%. After 21 months median follow-up, projected 2-year progression-free survival was 56%, with 80% overall survival at 30 months. Ten further patients were treated at MTD with a 40% CR rate. No dose reductions for any study drugs or deaths occurred during cycles 1-9. Lenalidomide, cyclophosphamide and dexamethasone is a safe, effective combination in relapsed myeloma inducing a high response rate, warranting further investigation in phase III trials.

Epidemiology data on multiple myeloma (MM) occurrence and outcome is inconsistent whilst a major limitation of randomized controlled trials is selection bias. We present a population-based analysis of patients diagnosed with MM in the South Thames area, which comprises 5.4 million adult inhabitants. A total of 855 cases of MM were ascertained between 1999 and 2000 in a collaborative project involving haematologists and the Thames Cancer Registry. The age-standardized rate was 3.29 per 100 000 and 4.82 cases per 100 000 (World Standard and European Population respectively). The median age was 73 years. The median survival for the whole group was 24 months whist it was 42 and 18 months in those aged less than 65 years and greater than 65 years respectively (P < 0.001). This population study has shown a higher incidence than previously reported in the UK and Europe and provides a benchmark for future studies. If survival is to be improved, future clinical trials and health care planning should consider patients over 65 years of age.

(See the editorial commentary by Branson and Stekler, on pages 521–4.)

No large-scale study has been performed to assess the problem of registering all subtypes of haematological malignancies. We compared registration of haematological malignancies between 1994 and 1996 by haematologists in 14 National Health Service Trusts in the Eastern part of the South Thames Region with data for the same area recorded by the Thames Cancer Registry (TCR). Case ascertainment and diagnostic accuracy were the two main outcome measures. A combined total of 4714 haematological malignancies were recorded over the 3-year period. Of these, 1329 (28%) were common to both databases, 1975 (42%) were recorded only by the TCR and 1410 (30%) were recorded only by the haematologists. Nearly one-third (31%) of all cases recorded by the TCR were death certificate-only registrations. The TCR records were obtained from 30 clinical specialities. Haematology only accounted for 35% of these cases. Discordant diagnoses were recorded in 20% of the cases that were recorded in both databases. Our data suggests that both registers have deficiencies in collecting and validating data on the incidence of haematological malignancies. To address this, a partnership was established in 1998 between haematologists in the South Thames Region and the Thames Cancer Registry. It is anticipated that engaging clinicians in the collection and validation of data will enhance the completeness of case ascertainment and improve the quality of data on haematological malignancies.

Objectives: A significant number of patients become refractory to platelet transfusion and prompt investigation of the cause will encourage appropriate selection of platelet products. Methods: We surveyed haematologists to assess perceived practice concerning platelet refractoriness because of the high cost and limited availability of HLA-compatible platelets. Some 56 of 58 consultant haematologists participated. Results: Clinicians differed on their definition of platelet refractoriness, and non-immune factors were not considered as important as immune causes of platelet refractoriness. A working group, including an invited moderator, was established to produce guidelines on recommended practice for the management of platelet refractoriness. Re-audit after implementation of the guidelines showed that more patients receiving HLA-compatible platelets had been tested for HLA antibodies. There was a mean 50.9% reduction in the use of HLA-compatible platelets. Conclusions: Increased testing for leucocyte and platelet antibodies resulted in reduced demand for and more selective use of HLA-compatible platelets, with no apparent increase in haemorrhagic complications.

SummaryStudies in North America and Europe indicate that the prevalence of blood-borne viruses (BBVs) is elevated in individuals with severe mental illness; there are no comparable data for the UK. We offered routine testing for HIV, and hepatitis B and C in an inner-London in-patient psychiatric unit as a service improvement. Of the patients approached 83% had mental capacity to provide informed consent for testing and 66% of patients offered testing accepted. Although it was not our objective to establish the prevalence of BBVs, 18% of patients had serological evidence of a current or previous BBV infection, we found that offering routine testing in an in-patient psychiatric setting is both practical and acceptable to patients.

OBJECTIVES: To assess sickle cell disease (SCD) patient and carer perspectives on the primary care services related to SCD that they receive from their general practitioner (GP). DESIGN: A focus group discussion was used to elicit the views of patients about the quality of care they receive from their primary health-care providers and what they thought was the role of primary care in SCD management. The focus group discussion was video recorded. The recording was then examined by the project team and recurring themes were identified. A comparison was made with notes made by two scribes also present at the discussion. SETTING: Sickle Cell Society in Brent, UK. PARTICIPANTS: Ten participants with SCD or caring for someone with SCD from Northwest London, UK. MAIN OUTCOME MEASURES: Patients perceptions about the primary care services they received, and a list of key themes and suggestions. RESULTS: Patients and carers often bypassed GPs for acute problems but felt that GPs had an important role to play around repeat prescriptions and general health care. These service users believed SCD is often ignored and deemed unimportant by GPs. CONCLUSION: Participants wanted the health service to support primary health-care providers to improve their knowledge and understanding of SCD. Key themes and suggestions from this focus group have been used to help develop an educational intervention for general practice services that will be used to improve SCD management in primary care.

Objectives To characterize emergency admissions for patients with sickle cell crisis in NHS Brent and to determine which patients and practices may benefit most from primary care intervention. Design Observational study Setting Emergency departments attended by residents of the London borough of Brent Participants Patients with sickle cell disease registered with a general practitioner (GP) in the borough of Brent Main outcome measures Analysis of admissions between January 2008 and July 2010 that included length of stay (average and Results Thirty six percent of sickle cell disease admission spells resulted in a length of stay of less than two days. Seventy four percent of total bed days are associated with patients with more than one admission during the period of analysis, i.e. multiple admissions. Two general practices in Brent were identified as having the highest number of patients admitted to the emergency department for sickle cell crisis and may benefit most from primary care intervention. Discussion Patients with short length of stay and multiple admissions may be potentially amenable to primary care intervention. The practices which have the highest numbers of sickle cell disease patients who frequently seek emergency care will be earmarked for an education intervention designed to help further engage general practitioners in the care and management of their sickle cell patients.

Waldenstrom's Macroglobulinaemia (WM) is an uncommon B-cell lymphoproliferative disorder defined as a predominately inter-trabecular bone marrow infiltration of small lymphocytes with an IgM monoclonal gammopathy. There are little reliable incidence and survival data for the disease in the UK since epidemiological studies have usually grouped it with other plasma cell dyscrasias. This study uses data from the South Thames Haematology Register and the Thames Cancer Registry for South East England to describe the incidence and survival of WM, and the influence of selected clinical factors on survival. Between 1999 and 2001, there were 152 new cases of WM recorded in the South Thames Haematology Register, giving an age standardised rate of 0.55 per 100,000 European standard population (0.73 for males and 0.42 for females). The incidence increased with age, and the median age at diagnosis was 75 years (range 45-93 years). The estimated 5 year survival was 57% (95% CI: 47-66%). Age over 70, haemoglobin less than 10 g/L and the Eastern Cooperative Oncology Group (ECOG) Performance Status grade 3-4 at diagnosis were associated with worse survival. Between 1985 and 2002, the Thames Cancer Registry recorded 750 cases of WM occurring in the wider area of South East England. The relative 5 year survival for patients aged less than 70 years was 70% (95% CI: 60-81%) and for patients aged 70 and over it was 50% (95% CI: 41-60%).

There is a paucity of epidemiological data on chronic myeloproliferative disorders and myelodysplastic syndromes (MDS), while subtypes of acute myeloid leukemia (AML) are rarely defined. We identified 2,112 adult myeloid malignancies in the South Thames area between 1999 and 2000. The incidence (European standard population) of AML was 3.00/100,000, that of MDS 3.47/100,000, chronic myelomonocytic leukemia (CMML) 0.46/100,000, idiopathic myelofibrosis (IMF) 0.37/100,000, polycythemia vera (PV) 1.08/100,000, primary thrombocythemia (PT) 1.65/100,000 and chronic myeloid leukemia (CML) 1.09/100,000. The 3-year survival for AML was 15%, MDS 45%, CMML 29%, IMF 48%, PV 80%, PT 81% and CML 50% We believe this study reflects the true incidence and outcome of myeloid malignancies in South East England.

Background: The optimal therapy for patients with relapsed/refractory multiple myeloma remains controversial. Lenalidomide, an oral immunomodulatory drug, has been shown to be an effective treatment in this setting, with in-vitro laboratory data suggesting that its effect is synergistic with a number of established chemotherapeutic agents. The primary objective of this study was to determine the maximum tolerated dose and toxicity of cyclophosphamide when used in combination with lenalidomide and dexamethasone for patients with relapsed/refractory myeloma. The secondary objective was to determine clinical response rates. Methods: Cyclophosphamide was given at increasing doses from 300 mg po in cohort 1, up to the maximum planned dose of 700 mg po in cohort 5 on days 1 and 8 of a 28 day cycle, in combination with dexamethasone (20mg po, daily on days 1–4 and 8–11) and Lenalidomide (25mg po, daily on days 1–21). Maximum tolerated dose (MTD) was established as one dose level below that at which 2 or more patients suffered dose limiting toxicity (DLT). DLT was defined as Grade 4 haematological toxicity or febrile neutropenia occurring during cycle 1 of treatment, or Grade 3/4 non-haematological toxicity during cycle 1, or a failure to start cycle 2 within 7 days of scheduled day due to toxicity. Once the MTD had been established, a further ten patients were enrolled at that dose. Safety assessments were performed weekly during cycle 1, and at the end of every cycle thereafter. Response data was collected on day 28 of each cycle. Results: Toxicity The most commonly observed adverse events were; neutropenia (grade 1–3), cramps (grade 1–2), somnolence (grade 1–2), constipation/diarrhoea (grade 1–2), minor infections (grade 1–2), and musculoskeletal aches and pains (grade 1). The most common reason for dosing delays and dose reductions was grade 3 neutropenia. Maximum tolerated dose No patients receiving doses of 300 to 600mg cyclophosphamide have experienced dose limiting toxicity during the first month of treatment. 2 patients receiving 700mg qualified as having dose limiting toxicity (One patient with febrile neutropenia, pneumonia and syncope (all grade 3)), and another with grade 4 pancytopenia). The maximum tolerated dose of cyclophosphamide in combination with lenalidomide and dexamethasone has therefore been established at 600mg daily on days 1 and 8 of a 28 day cycle. Response: A total of 31 patients were enrolled into the study. Median age at enrolment was 57 years (range 42–79). Median ISS at trial entry was 1 (range 1–3). Median time since last therapy was 7 months (range 1–84). To date, 36% of patients have achieved CR or VGPR, and 81% PR or better. Responses were assessed at the end of each cycle. 25 of the 31 patients have so far achieved PR or better. Of these 25 patients, 76% had achieved their maximum response by cycle 3 day 28. Patients had received 1–6 prior lines of therapy (median 3). 28/31 patients had previously received thalidomide, 20 had received autologous stem cell transplant, and 8 received velcade. 7 patients had received all 3 and, of these, 1 achieved SD, 3 PR, and 3 CR. This suggests that lenalidomide in combination with cyclophosphamide and dexamethasone is an effective therapy for heavily pre-treated patients. Conclusion: 600mg cyclophosphamide on days 1 and 8 of a 28 day cycle is well tolerated in combination with Lenalidomide and dexamethasone. The combination is a highly effective therapy for relapsed/refractory myeloma. The majority of patients achieved a maximal response during the first 4 courses of treatment. CRD is also an effective treatment for patients who have received extensive prior chemotherapy. Whether patients need to continue treatment to nine cycles remains to be tested. Figure Figure

Lenolidamide (Revlimid®) is an oral immunomodulatory drug that has been shown to be effective for the treatment of relapsed refractory myeloma, and in-vitro laboratory studies suggest that its action may be synergistic with a number of conventional chemotherapeutic agents. The aim of this study is to assess the efficacy and toxicity profile when lenolidamide is used in combination with cyclophosphamide and dexamethasone for patients with relapsed refractory disease. Multiply relapsed patients were given Revlimid 25mg po on days 1–21, dexamethasone 40mg po days 1–4 and days 12–15, and cyclophosphamide 500 mg po days 1, 8, 15 and 21 of a 28 day cycle for a maximum of 6 cycles of treatment. Prophylaxis with acyclovir, septrin and proton pump inhibitors was routinely used, 1 high risk patient received prophylactic anticoagulation. Toxicity profiles and response were assessed every 4 weeks. To date 18 patients have been included in the study with median age of 60.5 years (range 34–76). All were heavily pre-treated with a median of 4 previous lines of therapies (range 2–8). 12 patients had received high dose melphalan, 18 patients thalidomide and 16 patients bortezomib. One case had undergone an allogeneic BMT. The median time from diagnosis to treatment initiation was 55.5 months (range 11–122). To date 81 complete courses of therapy have been given to 18 patients with median number of 5 courses (range 1–6). 8 patients experienced neutropenia with the neutophil count falling below 0.5×109/L in a total number of 14 cycles, which resulted in a dose reduction or stopping of cyclophosphamide in 8 patients. 12 patients received GCSF to maintain their neutrophil count. 5 patients required dose reduction/omit of Revlimid. 4 patients required intravenous antibiotics for neutropenic fever. The side effect profile was manageable, importantly no patient experienced sedation, constipation or worsening of peripheral neuropathy. 2 patients with a heavy myeloma load suffered a DVT, but continued on therapy achieving a PR once anti-coagulation had been commenced. 14 of the 17 patients assessable for response achieved a response with 1 CR, 3 VGPR, 8 PR and 2 MR according to EBMT criteria. The median time to response was prompt at 32 days (range 21–68). To date only 2 patients have discontinued therapy because of a failure to respond to therapy and 1 stopped due to liver toxicity. 13 patients have completed treatment and 5 still remain on treatment. The combination of CRD is effective in heavily pretreated myeloma patients and has a manageable toxicity profile. In view of the neutropenia further studies using this combination are currently being investigated using cyclophosphamide on days 1 and 8 only.

In the UK there is a paucity of epidemiological data on the chronic myeloproliferative disorders (CMPDs) and myelodysplastic syndromes (MDS). In contrast data on acute myeloid leukaemia is consistently collected, but morphological subtypes are rarely defined. We present the incidence and outcome of myeloid malignancies in an unselected population from the South Thames area, which comprises 5.4 million adult inhabitants. A consensus registration form was designed in which haemato-oncologists from 27 Acute National Health Service Trusts prospectively identified and confirmed cases of myeloid malignancies between 1999 and 2000. The French, American and British classification system was used to define acute leukaemia and MDS (Eikelboom et al., 1996, Bennett et al., 1976, 1991). PT was defined according to the MRC PT1 criteria and diagnostic criteria for PV and IMF as defined by Pearson et al., (1996). Twice a year contributing haematologists validated their cases to ensure complete ascertainment of cases. Additional myeloid malignancies diagnosed outside haematology were ascertained and validated by the Thames Cancer registry (TCR) data collection officers. Registration forms were forwarded to the TCR for processing. Deaths from myeloid malignancies were identified by the Office of National Statistics, which records all cases nationally. Statistical analyses: the direct method was used to calculate the age standardized incidence rate using the European standard population (ESP) as defined by Jensen et al., (1991). Kaplan-Meier survival curves were compared using log-rank tests. Between 1999 and 2000 a total of 2,112 myeloid malignancies were registered of which 24% of cases were AML, 37% MDS and 39% CMPDs. Morphological subtypes were unspecified in 46.3% cases of AML, 27% cases of MDS and 17% of CMPDs. The median age was >70 years for all subtypes of myeloid malignancies with the exception of idiopathic myelofibrosis (median age 69 years) and chronic myeloid leukaemia (median age 51 years). The European age standardised incidence rate for AML was 3.00/100,000, MDS 3.47/100,000, chronic myelomonocytic leukaemia (CMML) 0.46/100,000, IMF 0.37/100,000, polycythamia vera 1.08/100,000, PT 1.65/100,000 and for CML 1.09/100,000. There was a significant male predominance for AML, CMML and MDS. Three year estimated overall survival (OS) for AML was 15%, MDS 45% (survival advantage observed for females), CMML 29%, IMF 48%, PV 60% and CML 50%. Three year survival was significantly different in patients aged less than 65 years compared to those aged 65 years or greater for AML (37% vs. 2%), MDS (66% vs.40%) and CML (74% vs. 17%) p Incidence and outcomes for adults with MDS, CMPDs, and AML vary from that reported in Europe and the USA (Maynadie, 1996, Taylor et al, 1996, Messa et al., 1999). We believe this study accurately reflects the incidence and outcome for myeloid malignancies in the UK and provides a benchmark for future population studies

Haematological malignancies (HM) accounts for 7% of all cancers in England (DoH, 2003). However, concerns have been expressed regarding the quality of information from cancer registries (DoH, 2000, Haward, 2003) which sheds doubt on the validity of the data. Several initiatives have been undertaken to improve the quality of data (Cartwright et al., 1990, 1997, Clough et al., 1996, Taylor et al., 1998, Maynadie et al., 1996, Ong et al., 1997). These initiatives have been restricted in the range of diagnoses or have operated independently of national cancer registries (Phekoo et al., 2002). No studies have assessed the impact of incidence on survival rates. We present results of a collaboration designed to improve the quality of data and assess the impact on incidence and survival. A consensus dataset and database of HM was developed between the Thames Cancer Registry (TCR) and clinicians between 1999 and 2000 in South Thames (adult population 5.4 million). Clinicians identified and confirmed the diagnosis of patients whilst diagnostic data were collected by a dedicated team of data collectors. Clinicians validated their cases bi-annually. Incidence and survival of the study population for the period 1999–2000 following the collaboration were compared with the same population over the period 1994–1996 prior to the collaboration and with a control population (North Thames area, adult population 5.5 million), where TCR collected data but without any clinical collaboration, for the period 1999–2000. Statistical analyses: the statistical significance of the standardized rate ratio (SRR) was evaluated using the method of Jensen et al., (1991). The Kaplan-Meier survival curves were compared using the log-rank test. For the period 1994–1996 there were no differences in the SRR or survival estimates in any disorders between North and South Thames. A 43% increase in incidence occurred between 1994–1996 and 1999–2000 in South Thames compared to only 5% in North Thames over the same periods, mainly for CLL, MDS, PV, PT, IMF, MGUS and WM. Table I shows a statistically significant difference in the SRR between the North and South Thames during the period 1999–2000 for five conditions: CLL, MDS, PV, PT and WM. Three year survival for patients diagnosed between 1999 and 2000 were higher in South Thames than North Thames in four conditions: CLL (71% vs. 49%, p = 0.001), CML (50% vs. 30%, p = 0.001), MDS (45% vs. 27%, p Table 1: Comparison of the age standardized rate between 1994–1996 and 1999–2000 in patients aged 16–85+ years 1994–1996 1999–2000 North Thames South Thames Comparison North Thames South Thames Comparison Subtypes ASR ASR SRR (95% CI) ASR ASR SRR (95% CI) CLL 4.28 4.76 0.89 (0.89–1.07) 3.78 6.58 0.57 (0.48–0.67) MDS 2.33 2.15 1.08 (0.80–1.46) 3.48 5.80 0.60 (0.50–0.71) PT 0.69 0.91 0.75 (0.50–1.13) 0.48 2.57 0.18 (0.13–0.26) PV 1.05 1.06 0.99 (0.69–1.41) 0.72 1.60 0.45 (0.31–0.63) WM 0.37 0.37 1.00 ( 0– 0) 0.33 0.98 0.33 (0.21–0.53) This study has shown that engaging clinicians have improved case ascertainment and that changes in incidence alone may affect outcome without significant differences in treatment. This study provides a benchmark of incidence and survival in the UK and a model for future collaborations.

The implementation of evidence-based treatments to deliver high-quality care is essential to meet the healthcare demands of aging populations. However, the sustainable application of recommended practice is difficult to achieve and variable outcomes well recognised. The NHS Institute for Innovation and Improvement Sustainability Model (SM) was designed to help healthcare teams recognise determinants of sustainability and take action to embed new practice in routine care. This article describes a formative evaluation of the application of the SM by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London (CLAHRC NWL). Data from project teams’ responses to the SM and formal reviews was used to assess acceptability of the SM and the extent to which it prompted teams to take action. Projects were classified as ‘engaged,’ ‘partially engaged’ and ‘non-engaged.’ Quarterly survey feedback data was used to explore reasons for variation in engagement. Score patterns were compared against formal review data and a ‘diversity of opinion’ measure was derived to assess response variance over time. Of the 19 teams, six were categorized as ‘engaged,’ six ‘partially engaged,’ and seven as ‘non-engaged.’ Twelve teams found the model acceptable to some extent. Diversity of opinion reduced over time. A minority of teams used the SM consistently to take action to promote sustainability but for the majority SM use was sporadic. Feedback from some team members indicates difficulty in understanding and applying the model and negative views regarding its usefulness. The SM is an important attempt to enable teams to systematically consider determinants of sustainability, provide timely data to assess progress, and prompt action to create conditions for sustained practice. Tools such as these need to be tested in healthcare settings to assess strengths and weaknesses and findings disseminated to aid development. This study indicates the SM provides a potentially useful approach to measuring teams’ views on the likelihood of sustainability and prompting action. Securing engagement of teams with the SM was challenging and redesign of elements may need to be considered. Capacity building and facilitation appears necessary for teams to effectively deploy the SM.