Communicating information regarding human H1N1-09 virus to high-risk consumers: Knowledge and understanding of COPD patients in Melbourne, Australia
Article Outline
Summary
Background
One of the public health challenges during an influenza pandemic is how to rapidly access groups of high-risk individuals to ensure that they have accurate information regarding prevention and management of infection. The aim of this survey was to evaluate the level of understanding of the H1N1-09 (Swine Flu) pandemic, amongst a high-risk group of individuals with chronic lung disease. This study was conducted in Melbourne, Australia towards the end of the 2009 pandemic.
Methods
Questions included in the survey were based on the consumer information sheets available from the Department of Health (Victoria) website (frequently asked questions for the general public). Participants were recruited from patients attending community-based programs for chronic lung disease.
Results
Eighty participants were interviewed in August–September 2009, the majority 70/80 were aware of the H1N1-09 pandemic in Melbourne. Most participants gained their information from media reports rather than health care providers. Although they were aware of some ways to decrease the spread of infection, only 20/80 (25%) knew that there were antiviral treatments available if they did contract the infection. It is noteworthy that in a substantial minority (25%), information reported in the media caused some confusion or anxiety and it appears that there was a gap in the provision of evidence-based information to this high-risk group.
Conclusion
In the context of future pandemics, respiratory-outreach nurses and educators could be used to promote pertinent information regarding infection prevention and management to high-risk individuals. Currently this appeared to be an under-utilised means of imparting pandemic information to consumers.
Keywords: Patient education, Nurse practitioner, Influenza pandemic, Chronic obstructive pulmonary disease, Respiratory nursing
Background
Respiratory nurse consultants based in both acute and ambulatory care have a recognised role in educating patients with chronic respiratory diseases about the prevention and management of acute exacerbations of their condition. The use of ‘Action Plans’ specifying the treatment steps to take in response to a change in symptoms is a well-established approach to providing patients with pertinent self-management information (Bourbeau, 2003, Bourbeau et al., 2006, Wood-Baker et al., 2006). There are, however, no published studies regarding the effectiveness of using respiratory nurses to promote appropriate infection prevention and management strategies to high-risk respiratory patients in the context of an influenza epidemic. In this context, the expertise of this specialised professional group and their ready access to a group of high-risk respiratory patients appears to be an under-utilised resource. Individuals with chronic respiratory disease, such as chronic obstructive pulmonary disease (COPD) are at high risk of developing complications following influenza infection, including the need for hospitalisation (Mangtani et al., 2004). Early, accurate triage and treatment of respiratory infections, preferably in the community setting, is therefore essential to minimise the burden on tertiary care and reduce morbidity and mortality in this high-risk group.
The H1N1-09 (‘Swine Flu’) influenza virus was a novel strain of the influenza virus that caused a world-wide influenza pandemic in 2009. The first cases of H1N1-09 infection in Australia were identified in late May 2009 in the northern metropolitan region of Melbourne. The pandemic peaked in Victoria early in June 2010 and in Australia overall by mid-July 2009. By the end of the pandemic (October 2009) there were 37,276 laboratory confirmed cases of pandemic influenza (H1N1-09) in Australia; this represented a small proportion of the total number of cases that occurred in the community (Department of Health & Ageing, 2009). In total, 4844 people required hospitalisation, with 13% requiring admission to intensive care units. Although the virulence of the virus was low, causing a moderately severe influenza-like illness in most people, it was associated with severe complications in vulnerable sub-groups of the population. Children and young adults had the highest rate of infection but, deaths following H1N1-09 infection were largely confined to older adults people with underlying chronic medical conditions (Department of Health & Ageing, 2009).
One of the public health challenges during a pandemic is how to rapidly access groups of high-risk individuals to ensure that they have accurate information regarding prevention and management of infection. The overall purpose of this project was to determine whether patients with moderate to severe COPD needed additional education to appropriately manage their condition during an influenza pandemic. The aim of this survey was to evaluate the level of understanding of the H1N1-09 pandemic that a high-risk group of COPD patients had gained from general media reports and publicity and to compare this to their understanding of how they routinely managed respiratory infections and exacerbations of their respiratory disease.
The H1N1-09 pandemic in Australia lasted from May 2010 to September 2010, this study was conducted in Melbourne, Victoria towards the end of the 2009 pandemic in Victoria.
Methods
Survey development
The survey was developed by the outreach respiratory team (which consists of respiratory nurse consultants and respiratory physicians). A focus group was used to reach consensus on the key points that it was important for patients with chronic respiratory disease to understand about H1N1-09, the survey questions were then developed to ensure that each of these points were addressed. Responses to the questions included in the survey were based on the consumer information sheets available from the Department of Health (2009a) (Victoria) website (frequently asked questions for the general public). Some questions included in the survey where the correct answer was negative, to avoid patients answering the survey automatically with all positive responses. Semi-structured, open-ended questions were also included in the survey to gain an understanding of participants’ attitudes to the information reported in the general media and any behavioural changes they had made to limit their own exposure to the virus.
To ensure that the survey questions were clear, addressed the key issues of interest, and that the responses were unambiguous, the survey was first tested with medical and nursing staff from the respiratory unit. After initial revisions, the survey was then tested with six COPD patients, to ensure consumer understanding, relevance, and consistency of responses before the main survey interviews were commenced.
Study participants were recruited from three sites: the Melbourne COPD Cohort (a long-term cohort of community dwelling adults with COPD) (Hutchinson et al., 2007), from the hospital outpatients department and from community-based exercise rehabilitation programs. All participants enrolled in this study had received self-management training regarding the identification and management of COPD exacerbations. As part of usual clinical care all participants had been given a COPD Action Plan specifying the initial steps to take when managing an exacerbation at home. The instructions given in the COPD Action Plans were tailored according to individual patient needs. To measure survey responders’ understanding and confidence to self-manage their condition, questions regarding the routine self-management of COPD exacerbations were also included in the survey. Participants were interviewed by the study research assistants either in person or by phone. Verbal consent for study participation was asked prior to commencing the survey interview questions.
The study was approved by the hospital ethics committee as a Quality Assurance activity.
Data analysis
Survey responses were reported as frequencies and proportions, and key themes were summarised from the qualitative data obtained from the open-ended questions included in the survey.
Results
Eighty community dwelling patients with moderate to severe COPD were interviewed in August–September 2009 regarding their understanding of the current H1N1 epidemic. All participants were English speaking, two non-English speaking patients attending community exercise rehabilitation program were excluded as there was no interpreter available. Hundred percent of patients approached participated in the study. Forty-five (56%) participants were interviewed over the phone, 22 (28%) participants were interviewed while attending the exercise rehabilitation program and 13 (16%) participants were interviewed in person at home or while attending the hospital for treatment. Each patient interview took approximately 15–20
min to conduct.
Knowledge regarding H1N1-09
The results of the survey are presented in Table 1. The majority of participants 70 (88%) were aware of the H1N1-09 pandemic in Melbourne. Most participants gained their knowledge regarding the H1N1-09 pandemic from television or newspapers, only 9 (11%) participants identified their general practitioner or hospital clinic as a source of information. Twenty-one (26%) participants agreed that some of the media information was confusing, with contradictory information being reported about the seriousness of the infection and the potential risks to the community. This confusion was reflected in some of the themes from the open-ended questions included in the survey, for example:
“Don’t always trust the paper, the media whips up panic”
“Yes it can be confusing … sometimes I think it is serious, sometimes I don’t”
“I don’t quite trust that they (the media) know what they are talking about”
Table 1. COPD patients’ knowledge and understanding of prevention and management of influenza H1N1-09 infection.
| 1. What is Human Swine Flu? | |
| A new virus that is ONLY found in Mexico | No 72 (90%) |
| A new flu virus that has been Circulating in Melbourne since May 2009 | Yes 70 (88%) |
| 2. What are the symptoms? | |
| Just like a cold | False 35 (44%) |
| Body aches, headaches, fevers, chills, and feeling tired | True 74 (93%) |
| Diarrhea and vomiting might be present | True 44 (55%) |
| Might become seriously-ill | True 73 (91%) |
| 3. How does it spread? | |
| Being sneezed or coughed on 1 seat away | True 71 (89%) |
| Being sneezed or coughed on when seated 10 seats away | False 25 (31%) |
| Touching infected surfaces and then touching your mouth and nose | True 72 (90%) |
| Blood transfusion | False 38 (48%) |
| 4. A person is infectious | |
| Two days before their symptoms begin? | True 66 (83%) |
| A week after their symptoms commence | True 55 (69%) |
| 5. What can I do to prevent catching and spreading Swine Flu? | |
| Cover your nose and mouth with a tissue when you cough or sneeze | True 72 (90%) |
| Wash your hands often with soap and water | True 78 (98%) |
| Take extra vitamins | False 46 (58%) |
| Avoid touching your eyes, nose and mouth | True 56 (70%) |
| Be immunized against swine flu when it becomes available | True 74 (93%) |
| 6. How serious is Human Swine Flu? | |
| Not always serious | 1 (1%) |
| Can cause serious illness in people who have lung problems | 62 (78%) |
| Extremely serious, always causes life-threatening illness | 17 (21%) |
| 7. What should do if I develop flu-like symptoms? | |
| See my local doctor | 72 (90%) |
| Attend a hospital Emergency Department | 30 (38%) |
| 8. Treatment for Human Swine Flu | |
| Is there a medicine (tablet) for the treatment of flu? | 20 (25%) |
| It needs to be prescribed by a doctor? | 71 (89%) |
| 9. Where do you get the most useful information regarding Human Swine Flu? | |
| TV | 35 (44%) |
| Radio | 17 (21%) |
| Newspaper | 36 (45%) |
| Doctor/hospital clinic | 9 (11%) |
| 10. Did you find any of this information confusing or caused anxiety? | 21 (26%) |
Participants were aware that H1N1-09 infection typically caused influenza-like symptoms and could cause serious illness in susceptible individuals. A smaller proportion 44 (55%) knew that the virus could also present with gastrointestinal symptoms (Table 1).
Prevention
Participants knew that the virus could be contracted by being coughed or sneezed on, or by touching infected surfaces and then touching their nose or mouth. Fewer participants understood that they were less likely to be infected by individuals if the infected individuals were seated further away from them, reflecting a lower level of awareness regarding the effectiveness of social distancing strategies. Almost all participants knew that covering the nose and mouth and hand-washing could decrease the spread of the infection. Fewer knew that avoiding touching their face could decrease the chance of self-inoculation with the virus. Most knew that vaccination could prevent infection, and some were aware that the H1N1-09 vaccine was being developed at that time.
Awareness of the H1N1-09 pandemic in Melbourne had not radically altered the participants’ behaviour. These COPD patients had previously been educated to limit contact with children with upper respiratory tract infections, and in the context of the H1N1-09 pandemic, they were endeavoring to follow this advice. Apart from a heightened awareness of the risks associated with exposure to infected individuals, the participants were not isolating themselves from their usual social activities, for example they continued to attend community-based exercise classes and support groups.
Treatment
The majority of participants knew that patients with chronic lung conditions were in a high-risk group that could develop serious illness if they became infected and understood that they should see their doctor if they developed flu-like symptoms. Interestingly only 20 (25%) knew that there were antiviral treatments available if they did contract the infection.
Understanding of COPD Action Plans
Seventy-five percent of participants were either confident or very confident about following their COPD Action Plan when they developed symptoms consistent with a COPD exacerbation (Fig. 1). In line with evidence-based guidelines for the management of COPD exacerbations (Abramson et al., 2009), 72 (90%) would start antibiotics if their sputum changed colour and 66 (83%) would go and see their GP after commencing treatment according to their Action Plan.
Figure 1.
Patient's confidence using COPD Action Plans.
Discussion
By the end of the 2009 pandemic in Australia, the participants in this study had a high level of awareness regarding the potential seriousness of H1N1-09 infection. Most of this information had been gained from general television and newspaper reports. Participants had a reasonable understanding of general hygiene measures to prevent the infection and that they should seek medical attention if they developed symptoms. Interestingly, participants had a low level of awareness of the use of antiviral treatment for influenza infection, although policy-makers had identified individuals with chronic respiratory illness as a high-risk group who should be given access to this treatment. In contrast the same individuals had a high level of understanding about the initial treatment for chest infections and exacerbations of COPD and were confident using their COPD Action Plan. Participants’ understanding of social distancing measures and the period of time that an individual was infectious was also low. These findings may reflect that media reports emphasised general information regarding the spread of a potentially serious influenza strain through the community, rather than specific details regarding appropriate prevention strategies and treatment.
The difference between individuals’ knowledge and understanding of COPD exacerbation management and that of H1N1-09 infection, demonstrates that although they had a good self-management skills for commonplace respiratory infections, that they had not received sufficient, personally relevant education regarding H1N1-09. It appears that these individuals would not have known to seek antiviral treatment if they developed influenza-like symptoms or if they were in close contact with an infected case. There is evidence that early treatment with Oseltamivir in confirmed cases of influenza infection; decreases the need for antibiotic treatment and hospitalisations in high-risk individuals (Kaiser et al., 2003). The challenge in delivering antiviral treatment is, that to be effective treatment needs to be commenced early (within 48h) after exposure to a case, or the onset of symptoms. Lack of awareness of this treatment option may therefore decrease patients’ access to optimal therapy.
It is also interesting to note that although they were in regular contact with their general practitioner and other community-health workers that they had gained most of their information from the media rather than health care providers. It is noteworthy that media reports were associated with some confusion regarding the H1N1-09 epidemic in a substantial minority (25%) of survey respondents. These individuals were unclear whether to believe media reports regarding the potential seriousness of the infection, and had not assimilated information regarding strategies to decrease exposure to the virus or what to do if they suspected that they had been exposed. It therefore appears that there was a gap in the provision of evidence-based information to this high-risk group.
One of the measures of a successful public health campaign during a pandemic is behavioural change; willingness to follow public health advice and to implement measures to decrease risk of exposure to infection (Jones, Waters, Holland, Bevins, & Iverson, 2010). One of the limitations of the survey approach used in this study as we were not able to observe whether there had been any actual changes in individuals’ behaviour. It is possible that these individuals were exercising greater vigilance in basic personal hygiene measures such as more frequent hand-washing and greater care disposing of tissues and sputum containers. This did not however come through as a theme in the survey responses.
Education of individuals with chronic respiratory diseases, (asthma, COPD, bronchiectasis, cystic fibrosis), includes education regarding self-monitoring for symptoms of respiratory tract infections and early initiation of treatment (Powell & Gibson, 2003). Longitudinal cohort studies have demonstrated that older adults with COPD can be trained to differentiate between symptoms of viral upper respiratory tract infections and exacerbations of COPD (Hurst et al., 2005, Hutchinson et al., 2007, Seemungal et al., 2001). As these high-risk individuals already have a heightened awareness of the importance of respiratory infections in triggering exacerbations of their condition, additional information regarding infection prevention and early treatment of influenza are within an already established respiratory, self-management framework (Walters, Turnock, Walters, & Wood-Baker, 2010). It would therefore be feasible to ask some patients with COPD to differentiate between mild upper respiratory tract infections (typically caused by rhinovirus) and systemic viral illnesses that may be associated with influenza infection. During an influenza pandemic, directions to seek medical attention and to start antiviral treatment when they had symptoms of systemic viral infection could then be incorporated into their regular COPD Action Plans.
In the context of future pandemics, specific public health information regarding infection prevention should be promoted through the general media early in the course of a pandemic As the majority of the high-risk individuals included in this study had regular (weekly/fortnightly contact) with community-based support programs, an additional strategy would be to deliver information relevant to the highest-risk groups through these programs. This latter approach would have the advantage of directly targeting the highest-risk individuals and appears to be an under-utilised channel for imparting information regarding the influenza pandemic. Consumer support groups such as the Australian Lung Foundation produce information booklets and press releases advising people with chronic lung disease about the risks associated with influenza infection during a pandemic (Australian Lung Foundation, 2009), these resources should be actively distributed to consumers attending community-based programs. Active local community engagement in distributing health information would help ensure that the information individuals received was relevant, accurate and presented in an appropriate format. Locally situated health care workers would be able to identify local needs for information to be translated for particular cultural groups and identify what medium (written, pictorial, Internet-based) was most accessible to their client group.
In the Victorian context the majority of these community support programs are funded through the Hospital Admission Risk Program (HARP) initiative (Department of Health (Victoria), 2010). These programs specifically aim to: improve health outcomes, empower individuals through education and self-management training and to provide individual with appropriate medical care (Department of Health (Victoria), 2010). Many of the respiratory outreach and education services in Victoria also provide ongoing support (by phone or in person) to people with low levels of confidence regarding the self-management of their condition. These clinicians typically work across the interface between acute and primary care, providing a liaison role between respiratory specialists and general practitioners. Respiratory nurses working in the ambulatory care sector could therefore incorporate specific education materials regarding the prevention and treatment of influenza into the standard education materials they distribute to patients (Department of Health (Victoria), 2009b). Those professionals working in community-outreach roles could also ensure that the most isolated and vulnerable individuals (such as house-bound patients with severe lung disease or those caring for grand-children) were informed about, and able to access both the influenza vaccine and antiviral medication when appropriate.
One of the advantages of harnessing community-based programs to provide education to specific high-risk groups of patients is that it increases the available task-force of health care workers able to respond to a pandemic. At the onset of the H1N1-09 pandemic in Australia, the epicenter was the outer northern metropolitan region of Melbourne. General practitioners working in this area struggled to keep up with the demand for their services, and patients with chronic disease experienced prolonged waiting-times for appointments, the potential risks associated with being exposed to the virus to in doctors’ waiting rooms and decreased access to practitioners who understood their complex medical problems (Bocquet, Winzenberg, & Shaw, 2010). As the virus was spread through the social networks operating within particular communities, local demand for primary care services changed rapidly as the epicenter of the pandemic moved though the region (Bocquet et al., 2010). Primary care providers needed to be able to respond rapidly (within days) to these fluctuations in demand for acute assessment services. Rapid demand fluctuations and the added bureaucratic requirements of managing patients with suspected pandemic influenza placed considerable strain on general practitioners (GPs). GP representatives have highlighted the need for a review of Australia's pandemic influenza management strategy (Eizenberg, 2009); of particular concern is the provision of sufficient primary care based, front-line resources at the onset of an influenza pandemic. In this context, community-based respiratory nurses who are already in regular contact with clients with chronic respiratory disease could be used as a task-force to accurately assess, triage and treat these individuals, minimising the burden on health service providers in both primary and tertiary care (Fletcher, 2007).
Involving respiratory nurse consultants and educators as a task-force that is involved in the dissemination of information regarding the influenza epidemic to high-risk patients can be considered to be part of their currently recognised educational role (Australian Asthma & Respiratory Educators Association website). In the future there would be the potential to extend their scope of practice to include: providing both influenza vaccination and initiating antiviral treatment (for probable influenza infection) to high-risk individuals with chronic lung disease.
Extending the role of respiratory nurses to include the management of respiratory infectious diseases, is a rational development of their role, particularly as early management of infective exacerbations of chronic lung diseases such as asthma and COPD is fundamental to preventing ongoing decline in lung function (Seemungal, Donaldson, Bhowmik, Jeffries, & Wedzicha, 2000). Previous reports have found that nurses working in advanced practice roles can safely and effectively manage common respiratory and urinary tract infections (Komaroff, Sawayer, Flatley, & Browne, 1976) and that in an emergency department setting can effectively assess and triage patients presenting with respiratory tract infections (Department of Health (NSW) 2007). A randomised, controlled trial in the UK demonstrated that a respiratory nurse practitioner could effectively manage patients with stable bronchiectasis and achieved equivalent outcomes to a medical practitioner (Sharples, Hollingworth, Caine, Keogan, & Exley, 2002). This study does not however provide any evidence about the potential for nurse practitioners to safely manage acute respiratory infections as this was outside the scope of practice of the nurses in this study.
The proposed extension of respiratory nurses roles would require more formal training of respiratory nurses in the management of respiratory infectious diseases and also that these practitioners undertake formal accreditation to administer vaccinations (Department of Health, 2009c, Nurses Board of Victoria, 2009). More fundamentally respiratory nurses would need to expand their horizons to understand that their role included an in-depth understanding of respiratory infectious diseases and their management. This expansion in nurses’ role and expertise, combined with institutional support from both respiratory nurses and physicians would give the momentum required to extend the role of respiratory nurses to that of respiratory nurse practitioners (Dunn, 2007, Nurses Board of Victoria, 2007). The role of the respiratory nurse practitioner is not yet well established in Australia, however events such as the 2009 influenza epidemic in Victoria, Australia highlight the potential need for this type of expertise in our community.
Acknowledgement
Funding for this study was received from the National Health and Medical Research Council (NHMRC), Australia, as part of the 2009 H1N1-09 funding initiative.
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PII: S1322-7696(10)00046-6
doi:10.1016/j.colegn.2010.06.001
Crown Copyright © 2010. Published by Elsevier Inc. All rights reserved.
