Designing services for Frequent Attenders to the Emergency Department: A characterisation of the population to inform service design Corresponding Author Dr Rebecca Jacob*, Consultant Psychiatrist and CLAHRC (East of England) Fellow, Cambridge and Peterborough NHS Foundation Trust, Mulberry 2 Ward, Fulbourn Hospital, Cambridge, CB21 5EF Rebecca.Jacob@cpft.nhs.uk, 01223-218557 Co-authors Dr Mai Luen Wong, Associate Specialist and CLAHRC (East of England) Fellow, Cambridge and Peterborough NHS Foundation Trust. Mai.Wong@cpft.nhs.uk Dr Peter Watson, Senior Statistician, MRC Cognition and Brain Sciences Unit, University of Cambridge Peter.Watson@mrc-cbu.cam.ac.uk Dr Catherine Hayhurst, Dr Catherine Hayhurst, Consultant in Emergency Medicine, Cambridge University Hospitals NHS Foundation Trust, Catherine.Hayhurst@addenbrookes.nhs.uk Dr Cecily Morrison, Research Associate, Engineering Design Centre, Engineering Department, University of Cambridge, Cambridge, UK cpm38@cam.ac.uk Key Words: Frequent Attenders, Medically Unexplained Symptoms, Personas Word Count ABSTRACT: Background: Frequent attendance to emergency departments (ED) has drawn interest from multiple stakeholders including healthcare providers, researchers and policy makers. Studies show frequent attenders, whilst a heterogeneous group, include those with medically unexplained symptoms (MUS), defined as physical symptoms, which are not/ inadequately explained by somatic disease, posing a high cost to health care services. Methods: The study conducted was a two part observational study identifying frequent attenders from the IT records of those attending the ED. The first stage studied trends and developed possible personas of the attenders; emphasis was placed on the different clinical presentations of Moderate Frequent Attenders (attending <20 times per year) and Extreme Frequent Attenders (attending >20 times per year.). The second stage included a case note review of 100 consecutive patients attending the ED frequently. Results: Over the eight year period analysed, a steady increase in ED attendance is recorded; with an increase in frequent attendance from 2.59% in 2003 to 4.12% in 2010. Ninety-seven % of frequent attenders consist of Moderate Frequent Attenders and account for 90.5% of frequent attendances. In the analysis of 100 consecutive frequent attenders, 45% % (45/100) had a clinical diagnosis of medically unexplained symptoms (MUS). MUS was associated significantly with younger age (p<0.001) but not with gender (p>0.05) and was largely represented by Moderate Frequent Attenders (p<0.001). Implications: ED is a useful hub for identifying and signposting frequent attenders with MUS to specialist psychiatric services. The majority of frequent attenders’ with MUS were of working age and fell into the Moderate Frequent Attenders category. Designing a care pathway for MUS should focus on this population in contrast to the case-management approach taken which is more appropriate to Extreme Frequent Attenders. Introduction Emergency departments (ED) in the UK are reporting a steady rise in demand that they are not resourced to manage.1,2 As a result of the substantial capacity issues now faced, ED services are being re-designed with input from a range of stakeholders, including healthcare providers, researchers and policy makers.3,4,5 Particular emphasis has been placed on addressing the needs of frequent attenders, those that present to the ED five or more times in a twelve month period, with hope that this will lead to more cost effective services.6,7 Published service models that address frequent attendance focus on ED-initiated, multidisciplinary ‘case management’.8 This involves the process of identifying the patient’s needs, both medical and social, and devising implementable strategies to address these needs, ideally outside an ED environment.8,9 This model embodies the common assumption that frequent attenders take up disproportionate amounts of consultation time and would be better served being elsewhere, such as primary care or psychiatric services.3,8 Evaluations of these models suggest that they improve psychosocial factors and can be clinically effective, but ability to decrease frequent attendance in the long term is unclear, 9,10,11,12 with some studies even suggesting an increase in attendance.9 One explanation for these mixed results is that the definition of a frequent attender in these models is imprecise. Indeed, research suggests that frequent attenders are a heterogeneous population who are difficult to characterise.3,6,7 As a starting point to propose alternative service designs, we need a richer characterisation of this group that moves past the pejorative labels of heart-sink, or thick-file patients.14 Describing the user, and articulating important differences within a group, is an essential first step in the design process.15,16,17 This is particularly true given that previous research has suggested this group of patients have diverse health needs.3,7 In this paper, we present two related research studies that describe different aspects of the population who frequently attend a large University Teaching Hospital in the UK. The first study looks at the extent of frequent attendance. The second study focuses more specifically on the characterisation of frequent attenders; with particular interest in those with medically unexplained and mental health symptoms. METHODS The research was carried out under the auspices of the NIHR-funding Collaborations for Leadership in Applied Health Research and Care (CLAHRC). This umbrella enabled collaboration between health professionals in the Cambridgeshire Peterborough Foundation Trust, Department of Emergency Medicine at Addenbrookes Hospital, Cambridge University Hospital NHS Foundation Trust, and the Engineering Design Centre, at the University of Cambridge. The initial driver for this project was the set-up of a local multi-agency working group to tackle the issue of frequent attenders to emergency departments, in particular, to address the unmet mental health needs that may be contributing.18 Study Design The study conducted was a two part observational study identifying frequent attenders from the records of those attending frequently to the ED. The first stage studied trends and developed possible personas of the attenders. The second stage included a case note review of 100 consecutive patients attending the ED frequently. Stage 1 Data was extracted retrospectively from the Addenbrookes Hospital electronic patient registration system for the time period January 1st 2003 (start of use of the system) to December 31st 2010. This included information about the patient e.g. patient name, hospital number, date of birth, gender, age, postcode and Primary Care Trust; and information about the attendance episode e.g. arrival date, arrival time, arrival mode, attendance reason, time seen, departure time, departure date, disposal description, minutes in department and diagnosis. We defined frequent attendance as patients attending more than 5 times in a 12-month period. We further subdivided this group into Moderate Frequent Attenders, who attend up to 20 times per year, and Extreme Frequent Attenders, who attend more than 20 times per year as described by Jelinek et al 19 Research has suggested a clinical distinction in these groups, with extreme frequent attendance including a population that is more often self referred, less likely to be hospitalised, and presenting with psychosocial problems. Moderate frequent attendance has been shown to present with more circulatory system disorders, greater urgency and a higher admission rate. 19, 20, 21 The data was collected by year, thus individuals who presented multiple times in short succession over the change from one year to another may not have been included. The stage 1 dataset was anonymised and then analysed using descriptive statistics to help identify frequent attender characteristics and presentation patterns. These results were then augmented to create Personas. Personas are a service design tool in which fictional characters are created to represent the different users that might use a product- in this case health care provision in the ED. They are built up from data and include demographic (e.g. age) and behavior patterns (e.g. number of attendances).22, 23 They play an important role in creating a shared and persistent view of the user which can be referred to when making design decisions. This is a particularly useful tool when a population’s diversity is not actively acknowledged, avoiding problems that arise when people have different ideas of the users and their problems. Stage 2 A detailed case note review of a total of 100 consecutive patients attending 5 or more times/year was conducted. In the second stage of data collection we defined FA as those attending 5 or more times a year to address our initial findings that the lower end of the spectrum is particularly relevant in capturing this subgroup of patients. A clinical information system was used to flag frequent attenders to the ED. The review included, assessing: demographic details, diagnosis and reason for latest ED attendance, number of attendances to the ED per year, number of speciality outpatient appointments attended, invasive tests and whether or not there had been at least one mention in the notes of a clinical impression of medically unexplained symptoms. The final one, was of particular interest because research literature suggests that these patients, despite attending both primary and secondary services frequently, have poor healthcare outcomes.24 Medically unexplained symptoms (MUS) are defined as physical symptoms, which are not, or inadequately, explained by somatic disease.24 The condition has been variously characterised but broadly fits into the following categories: functional somatic syndromes, somatoform disorders, and MUS as a broader group.24 The clinical impression is not a distinct one, but often includes nebulous physical and psychological ailments on a wide continuum of severity, duration and co-morbidity. Common symptoms include chest pain, abdominal, or back pain, tiredness, dizziness, headache ankle swelling, and shortness of breath, insomnia and numbness.25, 26, 27 Statistical analysis was conducted to evaluate the relationship between frequent attendance, demographic factors, mental health or medically unexplained symptoms and the support mechanisms currently in place for this vulnerable group of patients. This included: evaluating the proportion of frequent attenders with MUS, articulating factors relating to a clinical impression of MUS, assessing current mental health input, and whether the number, or reason, of attendances related to a diagnosis of MUS. RESULTS Stage 1 Attendances Over the eight year period analysed, 20,965 ED attendances were recorded and yearly data suggests a steady increase in numbers attending the ED over this time frame (Graph 1). Of this number, a total of 2,463 individuals presenting to the ED were frequent attenders. The proportion of total attendances by frequent attenders has also risen from 2.59% in 2003 to 4.12% in 2010. The percentage of patients responsible for these attendances has risen from 0.37% in 2003 to 0.65% in 2010 (Table 1). Graph 1: Rise in attendances in ED per year Year Total no of patients No of patients who are FA % who are FA 2003 50,122 186 0.37 2004 53,540 199 0.37 2005 54,735 244 0.45 2006 56,931 260 0.46 2007 62,962 323 0.51 2008 64,867 367 0.57 2009 68,556 432 0.63 2010 69,659 452 0.65 Total 481,372 2,463 0.51 Table 1: % of patients attending more than 5 times per year Moderate & Extreme Fas Table 2 breakdowns the data into number of Moderate Frequent Attenders and Extreme Frequent Attenders. Ninety seven % of patients fall into the Moderate Frequent Attenders group each year and they account for an average of 90.5% of attendances by frequent attenders. Year MFA (<20/year) EFA (>20/year) - No. of FAs No. of attendances No. of FAs No. of attendances 2003 182/186 = 98% 1494/1605=93% 4/186 = 2% 111/1605=7% 2004 197/199 = 99% 1524/1573=97% 2/199 = 1% 49/1573=3% 2005 236/244 = 97% 1866/2066=90% 8/244 = 3% 200/2066=10% 2006 251/260 = 97% 2015/2323=87% 9/260 = 3% 308/2323=13% 2007 312/323 = 97% 2489/2882=86% 11/323 = 3% 393/2882=14% 2008 355/367 = 97% 2796/3153=89% 12/367 = 3% 357/3153=11% 2009 419/432 = 97% 3212/3558=90% 13/432 = 3% 346/3558=10% 2010 441/452 = 98% 3515/3805=92% 11/452 = 2% 290/3805=8% Table 2: % of MFA vs EFA Proposed Frequent Attenders Mental Health Personas Combining our specialist knowledge with the characteristics and presentation patterns identified, we developed three mental health related frequent attender ‘personas’ of interest: 1. Moderate Frequent Attender with undiagnosed medically unexplained symptoms or somatoform disorders 2. Moderate Frequent Attender with undiagnosed mental health co-morbidity as a result of long-term conditions 3. Extreme Frequent Attender usually attending with repeated self-harm and substance misuse problems but with lower severity of medical illness Findings Moderate Frequent Attenders, given their large number, are a much more resource intensive group than Extreme Frequent Attenders. Yet, existing service models do not cater to their needs. Given the high rates of MUS and somatoform disorders presenting with gastrointestinal complaints and that the ED is one of the entry points for such patients, it is probable that this could represent an important sub-group of patients for whom to design services. In primary care, it is estimated that 10 to 30% of patients fall under the umbrella of medically unexplained symptoms 26, 27. In secondary care, it is reported that up to 25% of patients presenting to the ED with chest pain meet the diagnosis criteria for a panic disorder.24 An average of 52% of patients seen in Cardiology, Dental, Gynaecology, Neurology, Chest, Gastroenterology and Rheumatology outpatients can be diagnosed with MUS 25. MUS are estimated to pose a significant financial burden one study suggests it cost the NHS around £3 billion per year.28, 29, 30 For this reason, we were interested in exploring the characteristics of this group in more detail to identify the subgroups and the health care provisions currently available to frequent attenders with medically unexplained symptoms (MUS). Stage 2 Frequent Attenders with MUS The age range of the sample was 17-95 years; the median age 32 years. Majority presenting were White British, reflecting the local population. 65% had mental health symptoms or disorders, 71% of this group (46/65) had both MUS and mental health problems and 15% (15/100) had significant alcohol problems. Medically Unexplained Symptoms Forty five percent (45/100) had Medically Unexplained Symptoms. This included a clinical diagnosis of any symptom recorded by clinicians in the medical notes as lacking physical or test correlates. For example, patients were described on occasion as having MUS per se but they were also reported to have ‘functional somatic syndromes,’ such as chronic fatigue, non cardiac chest pain and non-epileptic seizures. Common symptoms of those presenting to the ED, with an associated diagnosis of MUS included abdominal pain, chest pain, shortness of breath and dizziness. MUS and Age The mean age of patients with MUS was 36.8 years; given the wide variation in age range we calculated the median age additionally which was 32 years. 87% (39/45) with MUS were under 65 years of age and MUS was associated significantly with younger age (p<0.001) but not with gender (p>0.05). Older age patients were more likely to have positive test results or medically ‘explained’ symptoms (p=0.004) MUS and Frequency of Attendance The number of ED attendances was not significantly different for those with/without MUS. However as suggested by previous research, MUS were largely represented by Moderate Frequent Attenders (p <0.001), that is, those who attend less than twenty times per year. MUS and Service Provision Ninety-one percent (41/45) of patients with MUS had invasive tests or procedures requested by multiple specialities. All patients with MUS were also seeing more than 1 specialty and on average had been seen by 5 specialist (secondary care) teams. Seventy-one percent (32/45) had both MUS and mental health symptoms and 47% (15/32) of those with both MUS and mental health diagnoses had mental health input from secondary providers. Only 4% (2/45) had specific psychiatric input for MUS; this included specialist psychiatric or psychological support from Liaison Psychiatry services to address MUS symptoms specifically as well as any secondary mental health symptoms arising in this regard. Our in-depth analysis of individual frequents attenders, characterising their demographics and health care needs, suggests that MUS is indeed a common presentation among this patient group. Almost half of the population of frequent attenders studied had a clinical impression of medically unexplained symptoms at consultation. We did not find any correlation between gender, but found those with MUS were most likely to be of younger age. Those with older age were more likely however to have had medically explained symptoms. We also demonstrated the potential cost implications of this group, which had an average of 5 speciality contacts. Case Studies Medically Unexplained Symptoms 35 year old man, married with 2 children, presented to the ED 9 times in the past 12 months. The symptoms related to ED presentation have included back pain, shortness of breath and back pain. There was no past psychiatric history, although the notes suggest that he has been under ‘stress’ in recent months. Over the years he has been referred either by the ED or the GP to Cardiology, Rheumatology, Medicine, Trauma Respiratory, and Infectious Disease OPD’s. He has also undergone multiple tests including X-rays, ECHO and MRI which were all unremarkable. He has been diagnosed by the Infectious Diseases department to have ‘post viral fatigue’ and the Cardiologists have documented, ‘Non cardiac chest pain’, both terminology used in Functional Somatic Syndromes. Medically Explained Symptoms 91 year old widowed woman with 7 ED attendance /year for recurrent falls, UTI; she was often admitted. Her General Practitioner had been treating her for mild anxiety symptoms, with SSRI’s but she had not been seen by secondary mental health services. She had been referred by either the ED Department or her GP to Geriatric Medicine, Gynecology, Dermatology, Rheumatology and General Medicine. Multiple invasive tests had been performed with a number of positive findings. She had multiple medical diagnoses including Squamous cell Carcinoma of the hand, polymyalgia, cerebrovascular disease, Giant cell arteritis, Ischemic Heart Disease and she had had a hysterectomy due to a diagnosis of Fibroids. Medically Explained/Unexplained symptoms 24 year old single female with 13 ED attendances in the last year had been referred by her GP or Emergency Department to Surgery, Ophthalmology, Hepatology and Gastroenterology. She had been given a diagnosis of cholecystitis and had had a cholecystectomy in the year prior to her frequent ED attendances. She had also had multiple invasive tests following her surgery which were within normal limits. Postoperatively she presented with multiple medically unexplained symptoms including chest pain, abdominal pain, double vision and headache. Gastroenterologists had given her a diagnosis of Irritable Bowel Syndrome and felt her abdominal pain was ‘medically unexplained’. Findings The number of patients with MUS is higher than previous studies, possibly because patients with even one medically unexplained symptom were included in the sample, unlike other studies in which inclusion criteria mandated only those with two or more separate medically unexplained symptoms. 29, 30, 31 The findings relating to the significant likelihood of frequent attenders with MUS being younger and not showing a predisposition to any specific gender, is also contrary to previous research suggesting that risk factors relate to older age and female gender. 29 Perhaps these finding can be explained by the fact that the majority of studies investigating MUS relate to routine primary and secondary clinical care as opposed to the frequent presentations to the ED studied in this cohort of patients. An additional finding is the number of speciality clinics visited and subsequent recommendations for invasive tests evident in the management of this patient group, again replicating other research findings. MUS sufferers were referred to at least one clinic and the majority were seeing five different specialities for their symptoms, which could explain previous research findings related to significant cost utilisation in this cohort of patients. DISCUSSION ED services are experiencing a steady demand in attendances, including those who have multiple health care needs and often poor outcomes. This study explores the extent to which frequent attendance is evident in a large Teaching Hospital ED and the characteristics and needs of this subset of patients. The overall increase in the number of attendances is in keeping with those reported by the Department of Health for England.32 As expected; this also results in an increase in the number of attendances by frequent attenders. In line with Jelinek et al’s study, the majority of frequent attenders at Addenbrookes Hospital ED (97%) are Moderate Frequent Attenders rather than Extreme Frequent Attenders. 19 It would follow that Moderate Frequent Attenders are probably the costlier group and designing a care pathway with this group in mind might yield the best value for money. From a design perspective, beginning to sub-categorise this population locally is essential to informing any new services to ensure investment returns the greatest impact. Only 15% of our frequent attenders were repeat frequent attenders and yet, they accounted for nearly 50% of the attendances. A number of our findings are helpful to take into account when planning services and improving care for frequent attenders to the ED. Firstly as suggested by other research studies frequent attenders do indeed constitute a heterogeneous population and service design must take into account the fact that ‘one size will not fit all’ when planning and designing services. Those who attend moderately (less than 20 times per year) and those who are extreme frequent attenders (more than 20) have different patterns of attendance and service needs. It must also be considered that some patients have medically ‘unexplained’ symptoms and others, medically ‘explained’ ones. It appears that the ED is a useful hub for identifying patients suffering with MUS. Involvement of primary and secondary care mental health services at the ED interface may be a point of focus to capture this patient population. Further, given that Moderate Frequent Attenders constitute at least 97% of the frequent attender population locally, collaborative healthcare planning in the design and delivery of a proactive service that offers identification, specialist assessment and appropriate sign-posting/treatment for this group will likely deliver the highest returns to investment. We believe this will work best as an age defined pathway focused on adults of working age (e.g. 16-65). Our findings suggest that notwithstanding growing interest from many areas of health care in frequent attenders, MUS and long-term conditions, current service models are not oriented towards the largest group of frequent attenders. As such, the medically unexplained and long-term condition related mental health problems are not being addressed in a joined-up manner for the above clusters of high-demand patients who present to the ED.31 This study provides initial guidance for service design efforts in this area. ACKNOWLEDGMENTS AND FUNDING This paper was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Cambridgeshire and Peterborough at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. We are grateful to Professor Peter Jones, Director of CLAHRC (EOE), Dr Christine Hill, Supervisor of the CLAHRC (EOE) Fellowship Programme and managers and clinical staff in the Emergency Department, Addenbrookes Hospital Cambridge, for their support. CONTRIBUTORS Rebecca Jacob and Mai Wong devised the projects, were involved with data collection/ analysis and wrote the paper jointly. Peter Watson provided statistical support for the project. Catherine Hayhurst was involved with project design and data collection in the ED. Cecily Morrison supervised both projects, including the preparation of the paper. 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The Guardian, February 13, 2006 31. Nimnuan C, Hotopf M et al. Medically unexplained symptoms: how often and why are they missed? QJM Monthly Journal of the Associations of Physicians 2000; 93 32. Department of Health (2010) A&E clinical quality indicators: Implementation guidance and data definitions. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_122868 Total no. of attendances/yr 2003 2004 2005 2006 2007 2008 2009 2010 62077 67074 68846 72599 81893 84689 90019 92374 FA no. of attendances/yr 2003 2004 2005 2006 2007 2008 2009 2010 1605 1573 2078 2330 2883 3154 3564 3805 1