People with long term conditions should be involved in developing self management tools. A trust consulted patients to meet their information needs.
Terry Robinson MSc, BSc, Dip Health Studies, RGN is respiratory nurse specialist at Harrogate District Foundation Trust
Robinson T (2010) Empowering people to self manage COPD with management plans and hand held records. Nursing Times; 106: 38, early online publication.
Patients with long term conditions are being encouraged to manage their condition. This article describes how a self management plan in the form of a hand held record for people with COPD was developed and implemented following consultation with patients and the multidisciplinary team. The record aimed to improve communication between professionals and services and enhance continuity of care.
Keywords Chronic obstructive pulmonary disease, Self care, User involvement
- This article has been double-blind peer reviewed
Chronic obstructive pulmonary disease (COPD) is a common chronic disorder.
The condition results in frequent A&E attendances and urgent hospital admissions (Wouters, 2003).
Patients with long term conditions, such as COPD, should be empowered to self-manage their disease (Department of Health, 2006).
Patients need information, self monitoring devices, self care skills, education and training, and self care support networks.
Patients with long term condition including chronic obstructive pulmonary disease (COPD) are being encouraged to self manage their condition (Department of Health, 2006) and a COPD hand held record can provide many of the tools required to achieve this goal.
The respiratory team at Harrogate and District Foundation Trust consulted extensively with patients who have COPD and members of the respiratory multidisciplinary team to develop an individualised management plan for use in primary, intermediate and acute care.
The team decided to develop a hand held record that combines;
- Patient education on the disease process;
- Advice on pharmacological and non-pharmacological management of stable and deteriorating COPD;
- Baseline and ongoing monitoring of patients’ disease.
The hand held record encompasses three elements: patient-centredness, collaboration, and evidence-based practice. The aims of the management plan are summarised in Box 1.
Box 1. Aims of the management plan
- Increase patients’ knowledge about their condition
- Give them control of their illness
- Provide information about sources of support to patients and carers
- Provide rapid access to advice and treatment when required
- Improve continuity of care
A steering group was formed to develop the hand held record and disseminate it to patients and healthcare professionals including GPs, practice nurses and community nurses in North Yorkshire. The group consisted of respiratory nurses working in the acute and community setting, respiratory consultants, community matrons, a respiratory physiotherapist and a long term conditions manager working for the local primary care trust..
Assessing patient understanding
As part of the evaluation of services offered to patients with COPD, a survey was undertaken to determine what individuals attending respiratory outpatient clinics knew about their condition. The Bristol COPD Knowledge Questionnaire (BCKQ), comprising 65 statements requiring true, false or don’t know responses, was used (White et al, 2006).
The questionnaire was given to 50 consecutive patients with COPD who attended either doctor or nurse-led respiratory outpatient clinics, and who agreed to complete it while waiting for their appointment. The advantage was that all participating patients returned the questionnaire but we were concerned that they may have rushed through it so they were not kept waiting. Most of the patients who attended the clinics had moderate or severe COPD and this has implication for generalising the findings to the whole COPD population.
Seven patients thought the questionnaire did not apply to them, as they did not know they had COPD. This was a concern as all seven had severe COPD, had been admitted to hospital on at least one occasion and been seen by a respiratory nurse specialist. After completing the survey, many wanted to discuss their knowledge about COPD during their clinic appointments.
Overall the results revealed that many patients knew little about their condition and were unaware of strategies to manage it. This finding is supported by Boot et al (2005) who found in a cross sectional study of 60 patients with COPD, that 30% did not know they had this condition, although 59% of their sample had being diagnosed for longer than 10 years.
Using focus groups
Hyland et al (2005) used focus groups to develop the Lung Information Needs Questionnaire. They found that the patients were knowledgeable in devising and clarifying questions, and used language other people with COPD would understand.
Patients need to be involved in the development of patient information resources (Wilcock and Grogan, 1998) so after analysing the questionnaires, we arranged a focus group. Six patients with COPD who attended the local British Lung Foundation Breathe Easy group were invited to attend. The optimum size of a focus group is 6-10 participants (Marshall and Rossman, 1999) as small groups are useful when in-depth information is required or when respondents have a lot of involvement with the topic discussed (Greenbaum, 1998). The group was held at the local hospital and facilitated by two respiratory nurse specialists.
Many of the knowledge gaps highlighted by this group were also raised by patients who completed the questionnaires.
All participants in the focus group felt the most important information for inclusion in the hand held record related to managing deterioration, as they received different advice from professionals in primary and secondary care. Participants also highlighted that they did not always understand their respiratory medication. They asked for their baseline medical information to be included as each time they saw a new doctor they had to re-tell their ‘story’, often when they were unwell and acutely breathless.
Interestingly, the participants found the term ‘exercise’ confusing, with many relating the word to sport, and suggested it should be replaced with ‘physical activity’. The group felt that smoking cessation advice was unnecessary, but this may be because all were ex-smokers.
The participants had very different expectations of the hand held record. One wanted a credit-card size management plan to carry around, in addition to the hand-held record. Another wanted the record printed in several European languages so patients could have an appropriate translation to take on foreign holidays.
Developing the record
The steering group reviewed the findings from the questionnaires and focus group and developed the content, design and implementation plan of the hand held record. Group members agreed with all the content apart from exacerbation management. One respiratory consultant felt including the descriptions ‘short of breath at rest’ and ‘difficult to talk’ with the recommendation to ring for an ambulance, would increase the number of unnecessary calls to emergency services. However, the respiratory nurse specialist leading the project felt it was better for patients to seek assistance at this stage, be assessed, and possibly sent home rather than waiting until they may need to be admitted with more severe symptoms. The group agreed to change the wording to ‘very short of breath’ and ‘very difficult to talk’.
There was discussion around the use of the word ‘exacerbation’. Some of the group thought patients would not understand the term, and ‘flare up’ or ‘attack’ might be more appropriate. Partridge (2004) suggests that only 4% of patients with COPD use the word ‘exacerbation’, with the majority using ‘crisis’, ‘attack’ and ‘chest infection’. Nordby (2006) discussed how medical terms have an important role in nurse-patient interaction, and suggested that terminology is introduced to patients with clear explanations. We therefore decided to use the word exacerbation accompanied by a brief explanation.
A draft version of the document was reviewed by the trust’s patient information and communication group who felt that the inserts had too many words per page, and not enough white space. The document was revised to make it easier to read and conform to trust policy. It was also sent to a board of professional readers who described the format as novel and saw it as a useful addition to the management of COPD.
One of the concerns raised by the steering group was whether healthcare professionals would view the hand held record as just another piece of paperwork. Inevitably it would take time to introduce patients to the record, complete the relevant personal data and investigations, and advise them on how to use it. However, we felt that in the long term the record could save health professionals time as relevant information would be available in one place. Many newly diagnosed patients know little about COPD and the document could be used as a teaching tool and provide signposting for additional information.
The final document contains an A5-sized envelope with information about what happens to the lungs in COPD and the importance of keeping physically active. It contains six inserts, listed in Box 2.
Box 2. Content of the record
- How to manage your COPD: generic information on COPD management
- About you: personal information, contacts of relevant health care professionals, care plan and goal setting
- About your COPD: personal information on the severity of COPD including investigation results, such as spirometry, arterial blood gases
- Drug management of COPD: including how the drugs work, which drugs are prescribed, and which have been stopped, and why
- Exacerbation management: including common symptoms, what is normal for them and a personalised exacerbation management plan
- Other treatments: oxygen and nebulised therapies.
The plan continues to evolve and two further inserts are being developed: palliative care and telehealth.
One of the limitations of this project is GPs and practice nurses were not invited to join the steering group, yet most patients with COPD are cared for in primary care. The local primary care trust (PCT) asked if the model could be adapted so that all four acute trusts within the PCT could use it. To facilitate this primary care nurses from each of the four areas joined the steering group and the plan was rolled out to over 11,000 patients.
Launch meetings were held to inform all practitioners working with patients with COPD about the record, including GPs and practice nurses, hospital staff, paramedics, community matrons and staff working in GP ‘out of hours’ centres, emergency departments, and local community hospital walk-in centre.
Patients are issued with the hand held record either during a hospital admission with an acute exacerbation of COPD, by the community nurses following a community-managed exacerbation or at their regular clinic review. Housebound patients are seen by either a community matron or community respiratory nurse and given their plan.
Patient education groups
Education groups for patients and their carers run for 90 minutes over a period of four weeks and were organised in rural areas where patients have difficulty accessing health care services. The content of sessions is summarised in Box 3.
Box 3. Content of patient education groups
Week 1: Patients issued with hand held record and receive information about COPD
Week 2: Information about inhalers and inhaler technique
Week 3: Talk by the community physiotherapist on keeping active
Week 4: Focuses on exacerbation management
The education group was well evaluated by the patients and carers who attended the courses. Patients completed an evaluation form on week 4 of the course with the majority of attendees stating they felt they would be more able to manage their COPD, while all said they would be happy to recommend the course to others. All attendees completed a Bristol COPD Knowledge Questionnaire (White et al, 2006) at the beginning of the course and we intend to ask them to complete another six months after the course to see how much knowledge they have retained. Carers were pleased they had been involved. They stated that they felt more empowered to help their partners, especially with exacerbation management.
Medical advances and an ageing population have combined to make long term conditions, such as COPD, one of the major challenges for healthcare systems, now and in the future (World Health Organization, 2002).
The aim of this initiative was to improve the patient experience by developing new ways of working. This was the first nurse-led initiative within the local trust which had prospectively looked at patients’ knowledge gaps and information needs, prior to developing a new service. This initiative reflects the Department of Health emphasis on role development, new ways of working and greater patient and public involvement (DH, 2006; 2000; 1999).
Liberating the Talents (DH, 2002) identified COPD as one of the key areas where a specialist nurse can improve patient outcomes. The individualised approach adopted in this initiative demonstrates the valuable role of nurses in COPD disease management across secondary and primary care.
Boot C et al (2005) Knowledge about asthma and COPD: associations with sick leave, health complaints, functional limitations, adaptation, and perceived control. Patient Education and Counselling; 59: 103-109.
Department of Health (2006) Supporting People with Long Term Conditions to Self Care. London: DH.
Department of Health (2002) Liberating the Talents: helping PCTs and Nurses Deliver the NHS Plan.London: DH.
Department of Health (2000) The NHS Plan; A Plan for Investment, A Plan for Reform. London: DH.
Greenbaum T (1998) The Handbook for Focus Group Research. Thousand Oaks, CA: Sage Publications.
Hyland M et al (2005) Information needs in COPD patients: the Lung Information Needs Questionnaire. AIRWAYS Journal; 3: 142–4.
Marshall C, Rossman G (1999) Designing Qualitative Research.London: Sage Publications.
Nordby H(2006) Nurse–patient communication: language mastery and concept possession. Nursing Inquiry; 13: 64–72.
Partridge M(2004) Patient understanding of the word ‘exacerbation’. Abstract presented at American Thoracic Society Conference. Orlando, USA. thoracic.org
White R et al(2006) Bristol COPD Knowledge Questionnaire (BCKQ):
testing what we teach patients about COPD. Chronic Respiratory Disease; 3: 123–131.
Wilcock J, Grogan S (1998) Involving families in the production of patient information literature. Professional Nurse; 13: 351-354.
World Health Organization (2002) The World Health Report 2002: Reducing Risks, Promoting Health Life. Geneva: WHO.
Wouters E(2003) Economic analysis of the Confronting COPD Survey: an overview of results. Respiratory Medicine; 97; Supplement, S3-S14.