Background People with chronic obstructive pulmonary disease (COPD) face multiple challenges living with a progressive and debilitating disease. It also results in heavy use of medical services and frequent hospital admissions. Patients need information, self care skills, education and training to be able to self manage their condition. Following extensive consultation with local COPD patients and the respiratory multidisciplinary team (MDT), an individualised management plan was formulated and implemented into primary, intermediate and secondary care.
Aims The aim of the record is to increase the knowledge and control patients have of their disease and provide patients and carers with easily identifiable and accessible sources of support
Methods Fifty COPD patients completed the Bristol COPD Knowledge Questionnaire. The results highlighted many knowledge gaps, despite the mean length of time from diagnosis being >5 years. COPD patients and carers also attended a focus group, where the same knowledge gaps were highlighted. This group also provided advice on how the information should be presented and the type of language and terminology that should be used. A second focus group consisting of members of the respiratory MDT was then held and the final format for the record agreed.
The information found in the hand-held record is based on identified gaps in knowledge in the local COPD population and includes:
What COPD is
Generic COPD management
Individual patient and carer management
End of life supportive care
The hand-held record has been well received by patients and health care professionals alike. The document is a ‘live’ document and is being further developed. Patient and carer education groups have been run over a 4-week period.
Conclusion Developing and implementing the COPD hand-held record has highlighted the knowledge gaps in the identification, management and education needs not only in patients with COPD but in health care professionals. Working in an integrated manner with patients, carers and colleagues from primary, intermediate and secondary care has helped bridge the knowledge gaps and led to better outcomes for patients and health care professionals alike.