Chronic Obstructive Pulmonary Disease (COPD) also known as emphysema/chronic bronchitis/smoking damage is a chronic inflammatory lung disease that causes obstructed airflow from the lungs.
Symptoms include breathing difficulty, cough, mucus and wheezing. It’s typically caused by long-term exposure to irritating gases, most often from cigarette smoke. People with COPD are at increased risk of developing heart disease, lung cancer and a variety of other conditions
The British Heart Foundation reports that an estimated 1.2 million people are living with diagnosed COPD – considerably more than the 835,000 estimated by the Department of Health in 2011. In terms of diagnosed cases, this makes COPD the second most common lung disease in the UK, after asthma. Around 2% of the whole population – 4.5% of all people aged over 40 – live with diagnosed COPD.
Imperial College London Faculty of Medicine National Heart and Lung Institute at the Royal Brompton in partnership with the NWL Consent to Contact Research Register is carrying out this three year-long observational study that aims to investigate any exacerbation of COPD symptoms, as often patients with COPD experience recurrent episodes especially as the condition progresses.
The outcome of the study will benefit researchers in identifying which condition are most common and in which age group, ethnicity and gender. The results and experience in gathering them for this study will feed into future similar studies, helping to refine processes and improve outcomes. In turn, we hope the findings of the study will empower the population of NWL to make changes in their lives to improve their health.
The participants will also benefit from gaining a better understanding of their condition and having direct access to a specialist clinical team, which should help improve their condition in the long run.
The team at the globally renowned Royal Brompton Hospital selected the NWL Health Research Register to recruit patients.
The register being linked to the depersonalised dataset enabled us (the team at the Royal Brompton) to identify accurately and rapidly the cohorts of patients that fit the exclusion and inclusion criteria of the protocol and were also located within close proximity to the hospital saving a considerable time and effort for the recruitment process.
All participants were required to complete a first preliminary screening visit with a specialist respiratory Nurse or Consultant, Thereafter, all those enrolled on the study have been asked to complete a very straight forward daily diary and record any increase in respiratory symptoms, time spent outdoor and peak expiratory flow. They then get invited for follow-up visits every 6 months. In the meantime they have round-the-clock access to respiratory specialists at the Royal Brompton.
This project linked routinely collected medical record data from the depersonalised dataset with individuals who showed interest in being contacted about research by registering on the NWL Health Research Register previously and offered their consent to be contacted for a possible research project. The dataset analysis identified 136 participants that fit the inclusion and exclusion criteria for this study.
Over a period of 7 days, the NWL Health Research Register team contacted all those on the identified cohort by phone, then followed up with an email detailing the study and asking their interest in taking part. There was a more than 25% conversion rate, with 45 patients wishing to participate.
The study is now on hold due to COVID19.
“I have been anticipating having a consultation with a specialist respiratory team at the Royal Brompton for years. I would very much like to attend the screening and find out if I qualify to take part.”
“Having recruited face to face at the outpatient departments for quite some time, it was great to really get involved in patient participant contact. It also gave us a better understanding of the whole process of our initial recruitment process done on the ground and what happens next, as well as how it works all round. In general, it gave us a bigger picture of the whole process.”
“When we spoke to patients at outpatient’s department they are normally excited. And so how this relates is that it gave us an action feeling that we were helping by putting patients into a study that can benefit their disease.”
“Most frequently asked question by individuals was how long the study will take, followed by how many times they will need to attend in a year. Also it came across some individuals who were homebound, who wondered how they will get to the hospital for the study. Furthermore, main challenge faced by the NWL Health Research Register team recruiting was to discount some patients from the initial invitation to participate due to the specific criteria, which lead in being disqualified.”