COPD Consumer Engagement: Post-market Review of COPD Medicines
The Department of Health is conducting a review of Chronic Obstructive Pulmonary Disease (COPD) medicines which will assess the use, safety, efficacy and cost-effectiveness of Pharmaceutical Benefits Scheme (PBS)-listed COPD medicines, to address Quality of Medicines (QUM) concerns associated with the use of multiple products. The Review is being conducted under the Australian Government’s Post-Market Review Program for PBS Medicines, under the direction of an Expert Reference Group.
Lung Foundation Australia was asked to facilitate a series of sessions with consumers to gather feedback on some of the key issues raised from this review. The overall goal of the research was to gain consumer opinions and feedback on a series of questions regarding COPD medicines to obtain consumer experience and knowledge regarding COPD medicines.
The study consisted of two focus groups with COPD consumer support group members in Brisbane, and 15 in-depth telephone interviews nationwide. The key findings of this study were:
- Among consumers, there is limited awareness of treatment guidelines. Consumers rely on their GPs and specialists to provide them with the knowledge on these medicines and assume that PBS-listed COPD medicines are consistent with treatment guidelines.
- Most consumers find the medical terminology surrounding inhaler devices, the combination of medicines, and active ingredients confusing. They require more product information and support from their GPs and specialists on inhaler devices and their use, with an emphasis on being able to easily understand the medicines, their use and intended effects on their treatment plan. Many rely on their respiratory nurses, support group members and pharmacists for this information.
- A key outcome of this research was that all consumers just wanted to be able to breathe and live as normal a life as possible. They understood they were unlikely to get better, however the use of medicines gave them a degree of control over their COPD symptoms, and better control of their lives. They accepted that side-effects were part of their treatment, and appreciated that due to the variety and combination of medicines available, they might need to trial different products before settling on one that suited them.
- Some consumers obtained a COPD Action Plan from their GPs and found it invaluable as it explained what the medicines did, what they were used for and why they took them.
- They appreciated having a support network, especially in the early stages of diagnosis.
- When initially diagnosed with COPD, most wished that their GPs had referred them to the Lung Foundation for more information about their condition, available treatment options, where to find pulmonary rehabilitation and for any additional support.
The report has now been compiled documenting the above findings, which was provided to the Department of Health. The Department released a draft report which was recently open for comment and Lung Foundation Australia submitted feedback.
We thank everyone who participated in this study and took the time to share their experience and knowledge with us. The knowledge we gathered adds the much needed consumer voice and perspective to this review.