A leaflet was designed to provide high-quality information to patients with non-cystic fibrosis bronchiectasis who are prescribed nebulised antibiotics.
Citation: McDonough B et al (2012) Patient information on nebulised antibiotics. Nursing Times [online]; 108: 17, 12-14.
Authors: Bev McDonough is asthma nurse specialist, Royal Liverpool and Broadgreen University Hospitals NHS Trust; Carol Kelly is senior lecturer, Edge Hill University, Ormskirk, Lancashire.
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The importance of providing patients with high-quality information is highlighted in several government reports. The aim of this project was to develop written information specifically designed for patients with non-cystic fibrosis bronchiectasis who are prescribed nebulised colistimethate sodium. This involved evaluating current literature and best practice, which was achieved through multidisciplinary collaboration.
The leaflet produced meets the recommendations of the British Thoracic Society and Department of Health, as well as NHS trusts’ legal obligations to promote equality and diversity. It is available as a printed document in a variety of formats and languages, and can be downloaded from the hospital website.
The importance of providing patients with high-quality information is highlighted in several government reports, and forms part of the Commissioning for Quality and Innovation (CQUIN) payment framework for healthcare providers in England (Department of Health, 2008). The British Thoracic Society published guidelines recommending the provision of written information for patients with non-cystic fibrosis bronchiectasis (NCFB) who are prescribed nebulised antibiotics (BTS, 2010).
This type of treatment involves a complex regimen of medication and physiotherapy that patients undertake at home. The absence of written information specifically designed for patients with NCFB who are prescribed nebulised colistimethate sodium led to the development of an information leaflet, which is designed to recognised standards.
NCFB and its treatment
NCFB is a chronic lung condition characterised by repeated bronchial infections and inflammation, leading to irreversible airway damage (BTS, 2010). Prevalence of bronchiectasis in the UK, not related to cystic fibrosis, is estimated at around one or two patients per average general-practice population of around 2,500 (ten Haken et al, 2007).
Management of the condition depends on severity but usually consists of physiotherapy and pharmacological interventions including prophylactic nebulised antibiotic therapy. Patients whose sputum is chronically infected with Pseudomonas aeruginosa (PA) are more likely to suffer reduced quality of life and increased hospital admissions (Wilson et al, 1997). These patients are subject to complex treatment regimens aimed at improving the vicious cycle of inflammation and infection (ten Haken et al, 2007). Pharmacological agents include nebulised antibiotics such as colistimethate sodium, which requires careful preparation and administration using specialist equipment by patients in their own homes. It is important that patients receive clear and consistent advice to ensure medication is taken safely and efficacy is optimised.
BTS (2010) guidelines for treating NCFB made the following recommendations on nebulised antibiotics:
- Patients should be given instructions to ensure the equipment is used safely and efficiently;
- Potential side-effects should be discussed (BTS, 2010).
Before taking nebulised antibiotics, patients are required to take inhaled bronchodilators such as salbutamol or terbutaline and perform sputum-clearance techniques to promote optimum lung deposition of medication (BTS, 2010).
Background to the project
At the Royal Liverpool and Broadgreen University Hospitals Trust patients prescribed nebulised colistimethate sodium are assessed by respiratory nurse specialists for tolerability of treatment and given a practical demonstration on the use of equipment in the respiratory outpatient department.
The BTS (2010) recommendations prompted a review of the information provided to patients by the respiratory team. This information comprised the printed leaflet from the pharmaceutical manufacturer but, as this is specifically aimed at patients with cystic fibrosis, it may confuse readers about their diagnosis. The respiratory nurse specialists therefore supplemented manufacturer’s information with handwritten notes; these were not subject to the quality-control measures applied to trust-approved patient information leaflets (PILs) or the legal obligations demanded by acts of parliament, such as the Equality Act 2010, and DH (2008; 2004) reports.
Providing patient information
The provision of health information features in several government reports. It is seen as placing patients at the centre of care by enabling them to make informed choices (DH, 2004) and is recommended for those with long-term ill health to help with self-management (DH, 2008).
Hospitals receive financial incentives based on patient-reported outcome measures (PROMs) through the CQUIN payment framework; recent additions include the provision of health information (DH, 2008). The DH (2003) produced an NHS toolkit with guidance on writing patient information; this underpins our hospital policy for producing information leaflets.
We have approximately five patients per year who are prescribed nebulised colistimethate sodium, so demand for PILs on treatment is low compared with other patient groups. However, even though numbers are small, in line with the Equality Act 2010, patients with NCFB starting this type of treatment should expect to have access to the same quality of information as those with more prevalent conditions such as asthma or diabetes.
Before producing information material, the NHS toolkit suggests checking whether relevant material already exists, such as that produced by charities or other organisations (DH, 2003). A search via the internet, including checking websites of NHS and charitable organisations, found no suitable information on using nebulised colistimethate sodium that met NHS toolkit or BTS standards. We therefore began to develop a PIL that would meet recognised standards and be based on the best available evidence.
Despite recommendations by the BTS, there is a lack of robust evidence supporting treating NCFB with nebulised colistimethate sodium (BTS, 2010). This may be because the treatment is only licensed for use by patients with cystic fibrosis and therefore use in NCFB is “off label” - a term used to describe medicines used outside the terms of their product licence or marketing authorisation. In December 2009 the Medicines for Human Use (Miscellaneous Amendments) Regulations 2009 came into force allowing independent nurse prescribers to prescribe off label medicines; however, this must only be undertaken when it is best practice to do so and nurses must take full clinical and professional responsibility for their actions (Nursing and Midwifery Council, 2006).
The lack of published literature led to a multidisciplinary consultation group being formed to pool skills and knowledge about best practice and review published literature. The group included 17 staff members from the directorate of respiratory medicine comprising: consultant physicians, specialist nurses, ward and outpatient registered nurses, a physiotherapist and pharmacist. The first meeting was organised through the clinical governance forum, which monitors the quality of patient care and adherence to recognised standards.
Patients should be involved in information production but the small number of patients using nebulised colistimethate sodium in our hospital did not allow for focus groups to be arranged. Instead, the multidisciplinary group provided examples of difficulties encountered by patients using the drug; the leaflet would also be approved by the trust’s lay reader group.
The information included in the leaflet was carefully considered. The group commented that the majority of patient concerns related to: potential side-effects; how to prepare medication; and in what order treatment should be taken. This information, together with BTS recommendations, the NHS toolkit and the requirements of our hospital policy, were used to influence the leaflet’s design. Box 1 shows the criteria used to inform its content.
The first draft consisted of a 16-page leaflet with information about bronchiectasis, preparing treatment and nebuliser therapy in general. The draft was circulated for review to the multidisciplinary group who provided a variety of suggestions (Fig 1). The majority of comments concerned the length of the leaflet and came mainly from consultants who pointed out print errors and gave specific advice suggesting alternative text. They suggested information should focus solely on the use of nebulised colistimethate sodium; the NHS toolkit also suggested that covering several topics at once can be confusing for readers (DH, 2003).
Nursing staff represented the largest group of professionals giving feedback and were more likely to approve of the leaflet’s overall appearance. However, one specialist nurse questioned the method of preparing the antibiotic for nebulisation; further clarification enabled us to amend this.
The leaflet was reviewed by the hospital lay reader group, which offered additional comments, suggested alternative wording and requested clarification on the supply of replacement equipment.
Box 1. Leaflet content and design criteria
Adapted from BTS (2010) non-cystic fibrosis bronchiectasis guidelines
- Importance of handwashing
- How to prepare medication
- How to use equipment correctly
- Correct order to take treatment
- Side-effects of treatment
- How to clean equipment correctly
- How to dispose of waste
Adapted from NHS patient information toolkit (DH, 2003)
- Read with information provided by the manufacturer
- Name and indication of treatment
- How the medication is given
- How often it is taken
- What other medication should be avoided
- What to do if a dose is not taken correctly
- Inform health professionals of all medication taken
- How to store medication correctly away from children
- Advice on where to get repeat prescriptions
- Contact number for advice
Adapted from hospital policy
- Clear language
- Typeface and layout: 12 point minimum, arial, justify to the left
- Evidence-based and accurate
- Date produced and review date
- Further resources
- Equality - available in other languages and formats
- Reproducible, cost effective
- States from where information has been produced
The leaflet was produced as a 12-page A5 booklet, with content adhering to NHS standards and BTS requirements. Left justification of text and arial font in 12-point size were used to help accessibility for readers who are partially sighted or dyslexic, as advised by the Royal National Institute of Blind People (2009) and the British Dyslexia Association (undated). Dense blocks of text can appear overwhelming to those with reading difficulties; this was avoided by using bullet points and maintaining an average of 11.3 words per sentence (DH, 2003).
Information was presented in a question-and-answer format, with headings in bold so readers could easily navigate through the document. Instructions for reconstitution of medication featured predominantly and were presented as a numbered step-by-step guide over six pages. Illustrations were included to aid understanding as suggested by the National Institute of Adult Continuing Education (2009) and produced in Microsoft Paint to avoid copyright issues. Telephone contact numbers of hospital staff, along with the websites of specialist organisations, were provided to enable patients to seek further information.
The leaflet is available in a variety of formats and languages to make it accessible to a wide range of readers and it provides consistent information, based on best practice and current research. It has been designed following recommendations of the DH (2003) and BTS (2010) and has been evaluated for quality and readability by the hospital lay-reader group. The elimination of handwritten information and acceptance by the hospital trust means it can be made available in a range of languages and formats, thereby addressing gaps in service provision for this minority group of patients. Although time consuming, this exercise has proved worthwhile - to our knowledge it is the only PIL that meets these recommendations.
Our search for PILs used a crude internet strategy that may have failed to find already existing information meeting current guideline standards. However, with the increasing numbers of people using the internet to access information about their health, we felt this approach represented methods used by patients searching for advice (McMullan, 2006).
Previous studies have used readability scores, such as the Flesch Reading Ease, to determine the quality of written information. These use formulae based on word and sentence length but as “colistimethate sodium” and “nebuliser” are repeated throughout the leaflet, using one of these tests would indicate it had a difficult readability level. Evaluation therefore followed recommendations from the NHS toolkit (DH, 2003), in which sentences with a maximum of 15-20 words are advised.
Although patients with NCFB have not yet evaluated the leaflet, it does meet the requirements of hospital lay readers, the BTS (2010) and the NHS (DH, 2003). Future work will include user evaluation and content will be refined as necessary.
The provision of high-quality patient information features predominantly in the government agenda and DH guidelines.
Producing patient information with multidisciplinary collaboration was time consuming but, given the paucity of published literature available and low patient numbers, this approach meant the leaflet could be critically evaluated by a variety of experienced health professionals. Lay reader assessment of readability and format also represented patients’ views.
Ensuring patient information meets hospital trust standards has enabled us to make the leaflet available in a variety of languages and formats, allowing distribution to a wider audience. As such, it meets the trust’s ethical, legal and operational obligations as stipulated by the Equality Act 2010 and the DH (2008).
British Dyslexia Association (undated) Dyslexia Style Guide.
British Thoracic Society (2010) Guideline for Non-CF Bronchiectasis. Thorax; 65: (supplement 1) 1-56.
Department of Health (2008) High Quality Care for All: NHS Next Stage Review Final Report. London: DH.
Department of Health (2004) Better Information, Better Choices, Better Health: Putting Information at the Centre of Health. London: DH.
Department of Health (2003) Toolkit for Producing Patient Information. London: DH.
McMullan M (2006) Patients using the internet to obtain health information: how this affects the patient-health professional relationship. Patient Education and Counselling; 63: 1, 24-28.
National Institute of Adult Continuing Education (2009) Readability: How to Produce Clear Written Materials for a Range of Readers.
Nursing and Midwifery Council (2006) Standards of Proficiency for Nurse and Midwife Prescribers. London: NMC.
Royal National Institute of Blind People (2009) Design.
ten Haken N et al (2007) Treatment of bronchiectasis in adults. British Medical Journal; 335: 7629, 1089-1093.
Wilson CB et al (1997) Effect of sputum bacteriology on the quality of life of patients with bronchiectasis. European Respiratory Journal; 10: 8, 1754-1760.