Asthma Attack. Targeting Emergency Asthma Contacts in Children. Final Report

Transcription

1 Asthma Attack Targeting Emergency Asthma Contacts in Children Final Report 1

2 FINAL REPORT Title: Asthma Attack Targeting Emergency Asthma Contacts in Children Project number: P01/3 Principal Grant Holder: Dr. James Y. Paton Reader in Child Health Department of Child Health Royal Hospital for Sick Children Yorkhill Glasgow G3 8SJ Co-applicants Dr. Ron Neville Gaylor Hoskins Colin McCowan Dr. Somnath Mukhopadhyay Dr. Jack Beattie Research Officers: Anne-Marie Love Mark Stewart Project Support Officers: Jenny MacDonald Barbara Smith Telephone: Fax: Date of submission: May 2005 The project was funded by NHS Quality Improvement Scotland 2

3 CONTENTS i. INTRODUCTION...4 ii. METHODS...6 iii. RESULTS iv. DISCUSSION V. CONCLUSIONS VI. RECOMMENDATIONS VII. DISSEMINATION VIII. ACKNOWLEDGEMENTS IX. TABLES X. FIGURES XI. REFERENCES

4 I. INTRODUCTION Asthma is the commonest chronic childhood disease in Scotland. The burden of the illness is enormous with symptoms that can be physically disabling for children and psycho-social consequences for both children and their families. In the UK, more than 1.4 million children (one in eight children) have a diagnosis of asthma. The 1998 Scottish Health Survey found that the prevalence of diagnosed asthma in children aged between 2 and 15 years was 17.5% (16% for girls and 19% for boys)[1], with the occurrence of asthma similar across age bands 2 6, 7 10 and years. The prevalence of asthma has been rising over the last two to three decades for reasons that are not clear [2]. The most recent Scottish data suggest that the prevalence of asthma may now be stabilising although the prevalence of eczema, another common atopic disease, is still increasing [3]. The management of childhood asthma takes place mainly in the community. Among children in the UK, respiratory disease was reported to be the most frequent cause of consultation with a general practitioner (GP)[4]. a. Acute Asthma Exacerbations and Asthma Management Acute exacerbations of asthma often result in hospitalisations. A report on health in Scotland highlighted that asthma was the most common cause of hospital admission in childhood [5]. Currently, asthma accounts for approximately one in 25 emergency admissions to hospital for children under the age of 15 years. Nevertheless, despite the above noted increase in childhood asthma prevalence, the number of GP consultations and hospital admissions related to asthma episodes in children younger than 15 years has steadily declined since the early 1990s [6]. Nowadays, many children who present to secondary care sites, such as A & E departments, with acute asthma are treated without needing in-patient admission. At the Royal Hospital for Sick Children (RHSC) in Glasgow, for every child admitted with asthma at least one other child with asthma attends, is treated and then discharged within a few hours. Unfortunately, there is no local longitudinal data available on whether the number of emergency centre attendances is decreasing or increasing over time. The fact that many children can now be managed in emergency departments might be thought to reflect better, more effective medical care. However, the limited data available suggests that there are currently some important deficiencies in the management of acute asthma in emergency departments, particularly in respect of illness severity assessment and discharge planning. Improvements in these areas might reduce future emergency attendances for asthma and decrease ongoing asthma morbidity. Because of the large numbers of children attending hospitals with acute asthma this is an important area to target. Managing an acute asthma exacerbation in children within the emergency setting can be broken down into three key stages: 1. Managing the first 4 hours in the emergency department Following presentation, the main issues are assessment of clinical severity and efficient asthma drug treatment. Successful medical treatment can rapidly bring an attack under control allowing a child to be discharged home to continuing care in the community. 4

5 2. Getting through the next 24 hours after discharge home Treatment following rapid discharge includes the continuing use of medications such as oral cortico-steroids and high dose broncho-dilators. If the child is going to be discharged home safely, parents need to know how these treatments should be used. They also need the practical skills to use the medicines effectively. Parents and carers also need to be able to recognise when treatment is failing and further help should be sought. 3. Planning for future attack management and prevention Any acute exacerbation and emergency hospital attendance is, in a sense, a failure of routine community care. As such, an attack provides an opportunity to provide targeted advice and education about asthma management as well as to encourage families back into asthma care review with their primary care team. The present project was aimed at stages 2 and 3 above. The goal was to make use of the few hours families spend in the emergency department during an acute asthma exacerbation to give asthma education and advice based on current SIGN/BTS asthma guidelines [7]. b. Asthma Education within Emergency Departments Within accident and emergency departments or short stay facilities there are pressures that make delivering asthma education particularly challenging. Demands on clinical staff time are considerable. There has been a reduction in working time as a result of the Junior Doctor s Hours Initiatives. Trained paediatric nurses are also in short supply. This project planned to take an innovative approach to these challenges by developing a simple to use computer based multimedia asthma education programme controlled via a touch screen which could be operated by families themselves with minimum or no instruction or support from staff. A multimedia approach is particularly attractive because it lends itself particularly well to the inclusion of training materials such as short video instruction clips. The present study targeted asthma education within the emergency department. If computer based asthma education could be made to work in an emergency setting and incorporated within clinical work patterns, it might offer a number of important advantages. In particular, it offers the potential for the delivery of standardised asthma education deliverable in a consistent and easily repeatable manner, without adding significantly to the demands on staff time. It would also be available 24 hours a day, seven days a week. Ultimately, asthma education should have a role in improving asthma outcomes such as, for example, reducing emergency health care utilisations and hospital admissions. The introduction of any educational intervention should include an evaluation not only of immediate changes in knowledge or behaviours but also an assessment of the intervention s longer term impact on asthma morbidity [8]. c. Overall aims of the project The aims of the project were: 1. To investigate whether children presenting with asthma attacks and who might benefit from asthma management education could be identified and labelled correctly while they were in the emergency department 5

6 2. To investigate whether the brief window of opportunity following an emergency contact, during the initial stages of asthma management, could be used to provide guideline-based, tailored education and advice to parents about attack management and prevention 3. To gauge whether such advice could be delivered reliably in daily clinical practice within an emergency paediatric unit. If so, to investigate whether parents were assisted by the information given and whether it facilitated successful resolution of the acute attack and encouraged a return to scheduled asthma care and follow-up with their GP. 4. To evaluate whether education about asthma attack management and feedback during these initial stages altered subsequent asthma morbidity in terms of hospital admissions, emergency health care contacts, patient quality of life etc. II. METHODS 1. Settings The study took place in the short stay areas and paediatric wards of two large teaching hospitals in Scotland the Royal Hospital for Sick Children (RHSC), a dedicated specialist children s hospital in Glasgow, and Ninewells Hospital, a large district hospital in Dundee. 2. Audit of Children Attending Emergency Departments In order to assess the numbers of children presenting with acute asthma and whether they could be rapidly identified and given a correct diagnostic label while they were in the emergency department, two audits were carried out. a. Audit 1 In order to determine the numbers of children who might be eligible for asthma education, a retrospective audit of emergency department records in the two hospitals was carried out. The aim was to identify all children with acute asthma attending the emergency medical departments in Glasgow and Dundee during the year 01/04/01 and 31/03/02. b. Audit 2 A second audit was undertaken to check whether the diagnostic labelling of children presenting with acute wheezing/asthma was sufficiently accurate to identify children to whom it might be appropriate to offer asthma education in the emergency department. In this audit, the notes of children over 1 year of age presenting with respiratory difficulties to the short stay ward in Royal Hospital for Sick Children (RHSC), Glasgow in November 2003 were reviewed. Excluding children under 1 year with acute wheezing effectively excluded the large numbers of young children who would have wheezing as part of viral bronchiolitis due to respiratory syncytial viral infection. Because of the very much larger number of cases presenting to the RHSC, this detailed audit was only undertaken in Glasgow. 6

7 3. Specification and Development of Multimedia Education Programme A key project goal was the development of a simple multi-media education programme focusing on asthma attack management. It was envisaged this would be operated by the families themselves with minimal or no staff help. The steps involved in the development of this educational programme are set out below. a. Educational Needs Assessment A small qualitative study to investigate patients experiences of using the emergency department services for acute asthma was carried out to inform the design of the educational programme. For this study, families were recruited from those whose children had attended an emergency department within the previous year with an acute asthma attack. Families were recruited from a number of sources: 1. specialist respiratory clinics at RHSC and Ninewells 2. short stay ward in RHSC and the GP Bay in Ninewells 3. in-patient wards at RHSC A qualitative topic guide was developed which could be used either in face-to-face or telephone interviews (Appendix 1). Information was collected about hospital attendance for an asthma attack, asthma triggers, warning signs, and asthma attack management. Interviewees were also asked about their confidence in dealing with an attack and about general asthma information needs. Interviews were recorded using a mini-disc digital recorder for later analysis. b. Developing the Multimedia Computer Package i. Defining the content Analysis of the results of the educational needs assessment, advice from expert asthma clinicians and discussion amongst the project team were used to define core modules, and their contents, that should be included in the educational programme. ii. Programming the package The content of the core modules was programmed using appropriate software packages particularly Macromedia Flash software. iii. Testing the content During the early stages of its development, any family using the computer package were asked to fill in a self-completion questionnaire (Appendix 2) investigating their views on the material developed and how it might be improved. iv. Developing supporting printed materials Printed materials to support the computer educational package were also developed. v. Staff training in using the package Once the package was ready for use in the study, medical and nursing staff from the clinical areas and wards were taken through the contents of the educational package and the supporting written material and trained in its use. 7

8 4. Assessing the Impact of the Educational Intervention a. Consent Issues Because education is considered a key part of current guideline-based asthma management, it was not considered appropriate to seek consent for the families to show them the multimedia educational programme. Rather, all families with children aged over 2 years presenting to hospital with acute asthma were given the opportunity to use the computer educational package. However, in order to investigate the families assessment of the package and its longer term impact we sought informed consent to approach families in the future for further information about their child s asthma attack and its management. Agreeing to take part included giving permission to review the child s medical records, both in hospital and general practice. b. Subject Recruitment Recruitment took place between May 2003 and February All families presenting with a child with an acute asthma exacerbation to the short stay ward at RHSC or to the GP Bay in Ninewells were eligible for recruitment. The two project support workers visited the Emergency Departments in both hospitals twice a week to check for any asthma attendances. Medical records for those who had attended were then located and checked for consent forms. The presence of a signed consent form in the records triggered the start of the study. c. Telephone Interviews Telephone interviews were used to investigate whether parents were assisted by the information given and whether it facilitated successful resolution of the acute attack. The aim was to complete a telephone interview 2-3 weeks after the attendance at the emergency department. All parents who agreed to take part in the follow-up and who had signed a consent form were eligible for interview. The project group developed a questionnaire (Appendix 3) that covered: Demographic details about the family Medical route leading to the emergency department Whether child already had an asthma diagnosis Asthma medicines used and management of asthma Details of the process of discharge from the hospital Carer s confidence managing asthma before and after the hospital attendance Thoughts about the computer package A small pilot study was carried out to estimate the feasibility and likely duration of the telephone interview. Interviews were found to last between 10 and 35 minutes and respondents were found able to answer the questions asked. In addition to a paper version, a computerised version of the interview schedule was developed using Microsoft Access. At the beginning, answers were recorded on the paper version and then transferred to the computerised version. With experience, data could be entered directly into the database. The data were analysed using the Access database. 8

9 d. Retrospective Medical Records Review To assess the effect of the educational project on longer term outcome, we collected information from the child s hospital & GP records about visits for asthma in the 12 months before and for the periods up to 6 and from 6-12 months after the hospital attendance. Information was also collected on the child s asthma medications and the use of rescue courses of oral steroids. i. The data collection forms Data extraction forms were developed to collect information from hospital and GP records. Again, a small pilot was performed to check the form was easy to use. The data collection forms included: Details of any emergency hospital admissions for asthma Details of any scheduled hospital visits for asthma Details of any emergency GP visits for asthma Details of scheduled GP visits for asthma A list of the child s asthma medicines ii. The process of data collection from GP records A computerised form linked to an Access database was developed. The project support workers then used laptops with database in GP surgeries to collect the data. Issues of data protection were overcome by having a password protected laptop, a password protected memory data stick, and a password protected database. The data stick was kept separate from the laptop. All information on the data stick was transferred to a networked hospital computer immediately for secure storage and back-up. iii. Data validation To ensure consistency of record collection and coding, at the start of the data collection both project support workers collected data from the same GP records. Data collection forms were then compared to check for consistency. Any differences were reviewed and common definitions agreed. In addition, senior members of the team accompanied the project support workers on two visits to GPs, to check quality and consistency of the data being entered. iv. Data collection time periods It was planned to collect data from the hospital and GP records for 3 time periods: months before the hospital attendance 2. Up to 6 months after the hospital attendance and 3. From 6-12 months after the hospital attendance 9

10 III. RESULTS 1. Audit of Children Attending Emergency Departments a. Audit 1 In the first audit, we identified all instances of children attending the emergency departments with acute asthma in Glasgow and Dundee between 01/04/01 and 31/03/02. Four hundred and fifty-two children presented to short stay in Glasgow with 619 episodes of asthma, wheeze or breathing difficulty; 16% attended twice, 8% 3 times or more and one patient attended 11 times. Of the children attending Glasgow, 239 (53%) were between 2 and 5 years, 141 (31%) from 5 to 10 years and only 72 (16%) over 10. In the same period, 175 children presented to Dundee with 209 episodes of asthma, wheeze or breathing difficulty. Age data on the Dundee children was not collected and is therefore not available for comparison. However, the age spectrum in Glasgow is in line with other National data. In Glasgow, 259 children (57%) were discharged home from the Emergency department while 193 (43%) were formally admitted to a ward. Because of the different arrangements for handling emergency admissions, similar figures were not available for Dundee. This audit confirmed that the numbers of children presenting to the emergency units in both Glasgow and Dundee were large. In addition, the more detailed data from Glasgow showed the expected predominance of children younger than 5. b. Audit 2 The second audit was completed to check whether the diagnostic labelling of children over 1 year of age presenting with acute wheezing/asthma was correct. This audit was carried out throughout the month of Nov 2003 only at RHSC. The notes of children over 1 year of age presenting with any respiratory symptoms or difficulty were reviewed (Figure 1). The initial diagnostic label was compared with the final diagnosis after careful review of all the available clinical information (Table 1). From the table, it can be seen that the initial diagnosis had a reasonably high sensitivity, specificity and positive predictive value for a final diagnosis of asthma. This suggested that the initial diagnostic label was sufficiently accurate to be used for deciding which children asthma education should be offered to. As a result of these audits, it was decided to target asthma education at children presenting with an initial label of asthma, or wheezing. Further limiting recruitment to children over 2 years ensured that children with viral bronchiolotis (who are usually under one year) were not inappropriately offered asthma education. 10

11 2. Specification and Development of Multimedia Education Programme a. Educational Needs Assessment 15 qualitative interviews were carried out with parents and children using the topic guide to investigate their experiences of their child s treatment in the emergency department. Parents were generally satisfied with the treatment they received. However, they reported that the information provided focused on immediate medical treatment. Many families reported that they would have liked additional information about asthma. When asked specifically, parents responded that they would be interested in receiving information via multi-media computer education if it were available (Appendix 4). b. Developing the Computer Package i. Defining the content Analysis of the results of the educational needs assessment, advice from specialist clinicians with an interest in asthma and discussion amongst the project team all contributed to the defining of three core modules that should be included in asthma educational materials for use in emergency departments. These 3 core modules were: How to give high dose bronchodilator by multi-dosing using a large volume spacer How to give rescue steroid treatment including detailed advice on how to prepare and administer soluble prednisolone tablets How to recognise when a child s asthma was getting worse and what actions to take The detailed content of the 3 modules was discussed by the project team to ensure that the content was both in line with the British Guideline on the Management of Asthma published in 2003 (BTS/SIGN no. 63) [9] and took account of local practice. Video materials illustrating points in asthma management were filmed specifically for the package using children with asthma in Glasgow and Dundee. Before videoing, children and their parents who might be suitable were approached and informed of the aims of the project and the specific use to which the videoed clips would be put. Videoing only took place if the parents and their and child gave consent. There were initial problems harmonising the detailed management of asthma in Dundee and Glasgow. These were resolved by detailed discussions between nurses and clinicians from the emergency departments in the two centres. As a consequence, agreed joint protocols and common patient literature were developed. This effective teamwork contributed greatly to the project s long term success. ii. Programming the content Once the content of the core modules was specified, it was programmed using Macromedia Flash software development package. 11

12 One member of the project team suggested that using cartoon characters might improve the usability of the computer materials. A cartoonist was contracted to design cartoon characters of typical children with asthma. These characters were then encoded and animated within the computer package. Using the computer characters to provide information and link modules required more computing effort and experience than was originally anticipated. However, the resulting user interface was clearer and more acceptable to children and parents and was far superior to that originally imagined. The cartoon characters were eventually used to provide a visual identity for all aspects of the project (see front piece). Overall, designing and programming the computer materials proved more difficult than initially expected and its development took longer than anticipated in the original project application. Some of the time constraints were addressed by subcontracting the development of specific modules. Since the multimedia project was developed on a modular basis, subcontracting specific modules worked well. This approach was used for the knowledge quiz and for additional sound for the whole package. Both these modules were developed separately then integrated within the overall programme. The final computer educational package was designed around a touch-screen interface. This avoided the need for either computer keyboard or a mouse for input. Animated cartoon characters guided the user through the material, explained what was happening and pointed out important information. The material was deliberately designed to be suitable for children and their families without having to read any instructions. iii. Testing the content Twenty six questionnaires were completed in Glasgow by families during the early stages of the computer package s development. In addition, nurses in Dundee collected comments from 4 members of staff, 2 patients and 1 parent. This pilot data highlighted areas where the package worked well and where it needed to be improved. For example, feedback at this point indicated that a greater use of sound would improve the package. It was at this stage that work on providing sound for the whole package was subcontracted. iv. Developing supporting printed materials Existing printed asthma materials were revised and updated and new written materials developed to provide parents with information and advice that they could take home. All of these materials included the cartoon characters from the multimedia package which provided a unifying visual identity. Copies of the immediate discharge materials which were specifically developed for the project are included as Appendix 5 & 6. v. Staff training in using the package Medical and nursing staff from the clinical areas and wards involved were taken through the content of the educational package and trained in its use. During these sessions, staff often made useful suggestions that were later used to modify and improve the package. Staff were also shown all the supporting documentation. Once an appropriate educational programme had been developed and staff trained in its use the main part of the project was to investigate whether it could be used successfully in practice, and whether it improved care and altered outcome. 12

13 3. Assessing the Impact of the Educational Programme a. Consent Issues A pilot study of recruitment procedures for the study was carried out in March In the initial consent process, parents were given an information pack including a consent sheet to take home. They were asked to complete the consent form and return it in a reply-paid envelope if they wished to take part. This process reflected the requirement of the Ethics Committee that we give parents 24 hours to consider the information before deciding whether to take part in the study. Unfortunately, this process did not work in practice and very few forms were returned. We then approached the Ethics Committee with a revised process. In the revised process we asked for a more limited consent at the time of the hospital attendance. A consent sheet was devised which the parents had to complete if they were interested in taking part in the study. A withdrawal form with reply-paid envelope was included in the information pack which the parents took home. Parents could withdraw, if they wished, by sending back a completed form in the reply-paid envelope. A researcher contacted the families by phone within 2-3 weeks after they had returned home to check if they were still happy to take part and to conduct the telephone interview. This revised consent procedure was approved by the Ethics Committee. It was found to work well in practice. b. Subject Recruitment Four hundred and sixty five children with acute asthma/wheezing attended and were eligible to be recruited (369 in Glasgow and 96 in Dundee). Of these, a total of 211 (45%) families were recruited to take part 152 (41%) in Glasgow and 59 (61%) in Dundee. One parent in Dundee withdrew during the telephone contact leaving a final total of 210 children (152 in Glasgow and 58 in Dundee). Of these 210, information from hospital and GP records was obtained in 207 for the 12 months before attendance and in 205 for the 6 months after attendance. Three children were lost to follow-up for reasons that are not known. Hospital details on a further 2 children could not be traced. Specific information in GP notes e.g. administration of a course of steroids could only be collected if a specific entry had been made. Details of the numbers of children attending in each centre, the numbers recruited and the numbers followed up for each outcome are set out in Figure 2. Because of the timing of the project data on the period from 6 months after attendance up to a year was only available for 77 children. c. Telephone Interviews Telephone interviews with parents took place between May 2003 and May (A copy of the questionnaire is included as Appendix 3). Of the original 210 who were recruited and consented, only 125 were successfully contacted for telephone interview (91/152 (60%) in Glasgow and 34/59 (58%) in Dundee. This represents 24.6% of those originally eligible in Glasgow and 35.4% in Dundee. The age of the children who were recruited is given in Table 2. In 89% (111) of calls, the mother provided the information with fathers being interviewed in 10% (12) and a grandparent in 2% of cases (2). Details of the reasons why interviews could not be completed in 85 patients are given in Appendix 7. This gives a sense of the difficulties involved in using telephone interviews for research purposes. 13

14 The telephone interviews covered the following broad areas. Demographic details Route to the Emergency Department Whether the child already had an asthma diagnosis before attending hospital Asthma medicines and management of asthma being used before hospital attendance Medicines and advice given before leaving hospital Confidence in managing asthma before and after the hospital attendance Parents thoughts about the computer package after using it in the emergency department The results from the telephone interviews grouped into the broad theme areas were as follows: i. Demographic details of the respondents (n=125) 42% of the children were aged 2-4 years, 50% were aged 5-11 years and 8% were aged years Three-quarters of the carers interviewed were married or living with a partner, 14% were single, 10% were divorced or separated and 1 person was a widow More than half of those interviewed owned their home (58%), 34% rented from the local council or housing association, 6% lived with their parents and 2% rented privately A third of the families interviewed lived in a flat 60% of those interviewed worked in paid employment (38% part time and 22% full time). 38% said they did not work and only 1 person said they were a student Of those who were married or living with someone, 84% said their partner worked (79% full time, 5% part-time). Sixteen percent said their partner did not work Almost three quarters of the sample owned a car (74%) ii. Route to the Emergency Department Most of the children were at home when their respiratory symptoms developed (87%) with 5% being at school or nursery and 6% at a friend or relatives house. Eighty three percent (104) of the children had been given treatment by the parents/carers before getting medical advice. When asked about what treatment they had given their child, 78 (75%) said additional reliever. The same families had also taken the following actions: 11 had also increased the preventer 2 had administered bronchodilators using multi-dosing 3 had administered nebulised bronchodilator 1 had given steroid tablets 2 had given cough medicine 5 had given paracetamol/ibuprofen Of the 26 who did not say increased the reliever : 14

15 5 had multi-dosed 2 had administered bronchodilators using multi-dosing 2 had given a liquid reliever medicine 2 had administered nebulised bronchodilator 4 had given cough medicine 11 had given paracetamol/ibuprofen This suggests that many families had taken appropriate action but were not aware that they were doing so. When asked who they had first sought medical advice from, 85% of parents responded that they had contacted their GP or an out of hours service first while only 9% had gone to hospital directly. iii. Diagnosis Two thirds of the children (n = 83) already had a diagnostic label of asthma before the index attendance. In a further 21% (n = 26), the child was given a diagnosis of asthma when they attended hospital. The remaining 13% (n = 16) were not labelled as asthma even though they had been treated for asthma/wheezing, treatment which included education appropriate for asthma/wheezing. The diagnostic labels these parents were given are listed in Table 3. The 83 parents of children given a label of asthma were asked about how long their child had had asthma. The reported asthma duration varied considerably: - 8 (10%) had asthma for less than 1 year - 30 (31%) had asthma for between 1-3 years - 45 (59%) had asthma for more than 3 years Information about asthma medication use was in keeping with this with over half (57%) reporting their child had been taking an asthma medicine for more than 3 years (<1 year 14%; 1-3 years 29%; >3 years 57%). More specifically, just under 45% (n =35) said their child had been taking preventer medicine for more than 3 years (Figure 3). iv. Medicines dispensed and asthma advice given We collected information about the medicines, devices and advice families were given before leaving hospital. Respondents were asked whether they had been sent home with any medicines and, if so, what. The answers were: 8 were not given any medicines to take home 32 were given 1 medicine 48 were given 2 medicines 27 were given 3 or more medicines In those families sent home with medicines, those prescribed were: steroid tablets in 85 (74%) asthma reliever medication in 69 (60%) asthma preventer medication in 37 (32%) 15

16 70% (80) said they had been given a new asthma device at the hospital. The devices prescribed were: 64 Volumatic 5 AeroChamber 5 Babyhaler 4 Accuhaler 2 Spacer 1 Evohaler 1 Turbohaler 1 Attachment for spacer 14 families were given a peak flow meter 97% (112) said they had been given an asthma plan when leaving the hospital. The current BTS/SIGN guidelines recommend that patients are reviewed in General Practice within a week of being seen at hospital. 78% (90) said they had been asked to make an appointment with their GP. Ninety one percent (82) of those asked said they had made an appointment to see their GP. However, the review of the GP notes by the project workers found that a much lower proportion were recorded in their GP records as having attended. v. Confidence managing asthma before and after the hospital attendance Families were asked about their confidence in managing their child s asthma. A distinction was made between those who had already been given a diagnosis of asthma and those who had no previous label. Of the 125 families questioned, 83 had been given a previous diagnosis of asthma and were using asthma medicines before the hospital attendance. They were asked about their feeling of confidence managing asthma before and after the hospital visit. Those reporting feeling very confident in day to day management rose from 42% to 70% (Figure 4). Those who reported they felt very confident in asthma attack management increased from 20% to 51% (Figure 5). Of 125 families, 42 had no previous diagnosis of asthma. Twenty six were diagnosed as having asthma at the emergency attendance. In the telephone interview, these families were asked: If they were confident managing their child s asthma on a day to day basis If they could spot their child s warning signs If they knew what to do if their child s symptoms deteriorated after going home Of the 26 diagnosed as having asthma at the emergency attendance, sixteen (62%) said they felt they would be fairly confident while 10 (38%) said they would be very confident managing their child s asthma from day to day. Eighteen (69%) said they felt they could spot the warning signs of an impending asthma attack in their child. When asked, they were able to list correctly signs they would look for in their child. Finally, 24 (92%) said they felt confident they would know what to do if their child s 16

17 asthma got worse and again when asked were able to list correctly what steps they would take. vi. Feedback from Parents Of the 125 families contacted to take part in the telephone interview, one hundred and twenty of the families had seen the computer package. Those who had seen the package generally rated it highly overall with 86 (72%) saying it was very good; 33 (27%) rating it as good and only 1 (1%) saying it was ok. In addition, 98% said they found the package easy to use while 99% said it was easy to read and understand. Ninety seven percent (n=116) of parents said that parts of the package were helpful or useful. The parts of the package which they found helpful are listed in Table 4. Sixty eight percent (n=81) said that some of the information in the package was new to them. The parts listed as presenting new information are in Table 5. Additional detailed qualitative feedback about the package is given in Appendix Retrospective Medical Records Review i. Access to case notes Retrieving hospital case notes was a persistent problem. Case notes circulated within the hospital usually to allow summaries to be completed before eventually returning to medical records. During this period, records were often impossible to locate. Because of difficulties reading the medical notes, the project support workers occasionally reported difficulties being certain of a child s diagnosis. The GPs of all patients who consented to take part in the study were sent a pack containing: a letter to the GP requesting that the project support worker could visit the practice; a copy of the signed patient consent form; the going home with asthma plan and a copy of the initial letter about the project. There were very few difficulties accessing data about children in the GPs surgeries. Only 1 practice refused to allow us access despite having written consent from the parents. Hand written, as opposed to computer records, remained common in general practice and making sense of the writing was a continuing challenge for the project workers. The number of children whose records were reviewed is given in Figure 2. ii. Returning to GP care As noted, current guidelines recommend that all patients be seen by their GP within 7 days of an emergency asthma hospital attendance or discharge. In order to investigate whether this had happened, the child s GP practices were visited and the GP records of 207 children reviewed. Only 70 (35%) patients had visited their GP within 7 days compared with 129 (65%) who had not. Relevant data could not be found within the medical records in 8 children. When the time to visit the GP was extended up to 28 days, 104 of the 199 with data available (53%) had visited. Unfortunately, because there was no control or comparator group, it is not possible to know whether the intervention brought about an increase in the number attending their GP within the appropriate time frame. 17

18 This relatively small number visiting GPs should be compared with the data from the smaller sample of parents who were interviewed by telephone where 78% (90) said they had been asked to make an appointment with their GP and 91% (82) of those asked said they had made the appointment. During the course of the project, it became clear that some parents were having difficulty arranging a review appointment with their GP. This seemed to be because the parents were unable to negotiate appropriately with the practice receptionists. It was decided that giving the parents more specific practical advice in the form of an information sheet would be helpful. An advice sheet was drafted and sent to practices for comment. The information was also discussed with parents of children with asthma. After reviewing feedback from both GPs and parents a final form of words was agreed. Thereafter, this sheet was given to parents as part of the written advice they took away after an emergency hospital attendance (Appendix 9). There was insufficient time to evaluate clearly whether this new information increased the number of children attending their GP within the specified target of 1 week. Nevertheless, it is evident that there is scope for increasing contact of families with their GP after a hospital attendance. iii. Improving preventive management Hospital attendances with asthma are often viewed as a failure of chronic disease management. Accordingly, an emergency attendance with asthma provides a stimulus to review a patient s preventive treatment and asthma management plan. One measure of whether such an outcome had been achieved would be a change in preventive treatment in the period after a hospital review. To investigate this, the GP notes of those attending were reviewed and the highest level of treatment in the period of a year before and the periods of from 0 up to 6 months and from 6 months up to 12 months after the index attendance was recorded. The data are given in Table 6. The data show a shift from no or intermittent reliever treatment (BTS Step 0 or 1) to regular inhaled steroid treatment (BTS step 2) or steroid treatment combined with a second preventive treatment (BTS step 3). This suggests that the emergency attendance had resulted in a change in preventive treatment. iv. Unscheduled Emergency Care If preventive care reduces ongoing asthma morbidity, then unscheduled emergency attendances either at hospital or general practice, and the use of rescue courses of oral prednisolone would also be expected to decrease. a. Emergency hospital visits In both Dundee and Glasgow, there is only one paediatric emergency hospital unit. All children attending hospital in the two cities come to the relevant unit. This allowed us to track attendances of children whose families had consented to take part in the year before and up to one year after the index attendance by reviewing the child s hospital notes. Because of project timing, and rolling enrolment, not all children reached the one year mark after the index visit. The number of children with data available was therefore less for the second 6 months (from 6 up to 12 months) than for the first six months after attendance. Data on emergency hospital attendance for asthma were available for 205 children in the 12 months before the index visit and in 205 children for the 6 months after (Table 7). Emergency visits to hospital were not common. One hundred and fifty 18

19 nine children (77%) had had 0 other visits while 31 (15%) had 1. The remaining 15 children (8%) had more than one visit with the most being 5 (1 child). There was essentially no change in the percentage of children coming to the hospital emergency departments in the initial 6 months after the index case (Table 7). Seventy three children had data available for a period of one year before and one year after the index visit. The number of emergency hospital attendance visits in these children in the 1 year period before the index visit and in the periods from 0 up to 6 months and from 6 12 months after the period is given in Table 8. The percentages of children having 0 visits increased slightly while the number having 1 decreased slightly. However, the total number of visits changed little (23 vs. 28). b. Emergency GP attendances Acute asthma attacks severe enough to require attendance at hospital are by their nature uncommon events. Emergency GP attendances might be expected to be somewhat more frequent and might show more evidence of change. Data on emergency attendances at GP were collected from a case note review of the GP records. Table 9 shows the data available for the year before attendance and the 6 month period after (from 0 up to 6 months). In Table 10, more limited data for the 69 children who had data for the period of 1 year before and up to 1 year after the index attendance is shown. Figure 6 displays the same data but makes the shift to fewer consultations more evident. Overall, there were 146 visits in the year before and 113 in the first six months (from 0 up to 6 months) following. In those with data for all three times there were 23 visits in the year before compared with a total of 30 in the year after (16 & 14 for each consecutive 6 month period) The data in Table 10 suggest an increase in the percentage having no emergency GP visits principally because of a decrease in the percentage of children having 2 or more visits. c. Steroid courses Data on steroid courses was collected from the GP notes and is shown in Table 11. The data is limited but there is an increase in the percentage of children receiving no courses of oral steroids following the index attendance. IV. DISCUSSION In this project, we developed a multimedia computer based asthma education programme and showed that it was possible and practical to deliver asthma education to families of children with acute asthma during the short period they spend in the emergency departments. This was achieved in both the settings studied in RHSC, Glasgow, a specialist children s hospital and Ninewells hospital, Dundee, a large district general hospital The project had a number of specific aims. The first aim was to investigate whether children presenting with asthma attacks could be accurately identified while they were in the emergency department. Two audits established firstly, that large numbers of children attended for emergency asthma management at the emergency paediatric units in both Glasgow and Dundee and secondly, that the initial diagnosis was sufficiently accurate to allow children with a label of asthma or wheezing to be targeted with asthma education. 19

20 An important part of the project involved the specification, and development of a computer based multi-media package that could be used to educate families and their children about key aspects of the management of acute asthma. Once the package and supporting materials were developed we established that the materials could be incorporated into clinical work practices and could be used to deliver asthma education to families during their time in hospital. For children who are discharged from the emergency department directly, this time is short often being around 4 hours from attendance to discharge. In the past, such families would have received either limited or no education about asthma. The asthma education delivered by the computer programme had a number of valuable features. It was of high quality being targeted at families needs and incorporating the best available guidance about acute asthma management. The education delivered by the computer, inevitably, always delivered the same content in the same way. In use it proved reasonably reliable and robust. It could be operated by parents themselves allowing them to work through the material at their own pace without any additional clinical input. Using the programme and the computer proved surprisingly popular with parents and children, and their feedback on the materials developed was generally very positive. Having confirmed that a multimedia education package could be embedded within the management of asthma in the emergency departments, we attempted to evaluate whether parents were assisted by the education given and whether it encouraged a return to scheduled asthma care with their GP. This was investigated using a telephone questionnaire of parents who were recruited at the time of hospital attendance. Although a large number of families were eligible, only 45% of those eligible were recruited, with recruitment being substantially better in Dundee (61% vs. 41%). The reason for the difference is not known. It may be that the smaller numbers in the less busy unit in Dundee actually resulted in recruitment being more focused and successful. Of those recruited, an even smaller number successfully completed the telephone interview (24.6% of those originally eligible) although in this case there was little difference in the percentage of successful interviews between Dundee and Glasgow. One interesting result from the telephone questionnaires was a reported rise in confidence in managing asthma both on a day to day basis and in acute asthma management. Expression of confidence in being able to perform an activity, a concept often called self-efficacy, has been identified as a key feature of selfmanagement behaviours. However, in the absence of an appropriate control group, it is not possible to know if the reported rises in confidence were higher having seen the package than they would otherwise have been after a hospital attendance. The current BTS/SIGN guidelines recommend that patients are reviewed in General Practice within a week of being seen at hospital. From the telephone interview, we noted that 78% (90) of families said they had been asked to make an appointment with their GP. Ninety one percent (82) of those asked said they had made an appointment to see their GP. However, subsequent review of the GP notes by the project workers found that a much lower proportion were recorded in their GP records as having attended. The reasons for the low attendance at the GP within the recommended timescale were not defined. We had some informal reports from families that they found it difficult to negotiate GP appointment systems. We 20

21 attempted to address this by providing families with some basic information about how to request an appointment from their practices. We also attempted to assess whether the education had an impact on subsequent longer term asthma morbidity and this was assessed by a review of the hospital and GP records for a period of 1 year before and up to 1 year after the initial hospital attendance. Because of a lack of suitable comparator group, a rigorous evaluation of the education and its impact on asthma outcomes was not possible. However, the available data hint at improvements in asthma treatment and morbidity following the emergency department attendance. These positive signs included an increase in the numbers receiving preventive asthma treatment, a decrease in the proportion having emergency GP attendances and a decrease in the proportion receiving oral steroid rescue courses. Limitations In the original application it was expected that some children would not use the educational package for a variety of reasons. It was planned that informed consent for follow up would be sought from these parents and they would be studied in the same way as those who had the educational package. This would have provided a comparator group for the evaluation of the impact of the education. Unfortunately, this did not work. We think this was due to demands of obtaining informed consent within a busy clinical environment, especially as dedicated research staff were not available to undertake the consent process. As a result, we had almost no data on the children and parents who were not shown the educational programme because they were not consented. As a consequence there was no comparator group available to investigate the efficacy of the educational programme on outcomes. The MRC has published a Framework for development and evaluation of RCTs for complex interventions to improve health [10]. This document sets out how in developing complex health interventions, such as the present asthma education programme, it is helpful and often essential to have an exploratory trial phase before proceeding to a formal randomised control trial. The outcome of such an exploratory trial would be the description of the components of a replicable intervention AND a feasible protocol for comparing the intervention to an appropriate intervention. In retrospect, this project fits well within that framework and is best viewed as an exploratory trial. The next step would now be to proceed to a definitive RCT to investigate the effectiveness of the educational programme on important asthma outcomes of the asthma education package. Such a trial would include a formal evaluation of the cost effectiveness of the computer based package. V. CONCLUSIONS We developed a multimedia computer based asthma education programme and showed that it was practical to deliver asthma education to families of children with acute asthma during the short period families spend in the emergency departments. We also established that children with asthma attacks could be recognised and appropriately targeted for education during heir short stay in the emergency department. The education they received was based on current asthma guidelines. It focused on key points in the acute management of asthma. Once the computer 21