Plain language summaries of our case studies
We have been testing preference elicitation methods in clinical case studies. We have involved both patient partners and clinical research partners in the PREFER project case studies on lung cancer, rheumatoid arthritis and neuromuscular disorders. PhD students working in the project and partners from the pharmaceutical industry have also conducted their own case studies. Here we share some of our findings in plain language.
Preventing RA - What treatments do people at risk of rheumatoid arthritis prefer?
Rheumatoid arthritis, often referred to as RA, is a long-term condition that mainly affects the joints. RA causes pain, swelling, stiffness and often fatigue. If patients are not treated, their joints can suffer permanent damage, which can lead to disability. Preventative treatment can help. In this study, 350 first degree relatives of RA patients and 3000 members of the general public were asked to imagine that they had a 60% risk of developing RA in the next 2 years before being asked to make treatment choices. We have produced a plain language summary to describe the results from our case study that is now available for download.
Simons, G et al. Preventing RA: What treatments do people at risk of rheumatoid
arthritis prefer?. Zenodo. 2021. DOI: 10.5281/zenodo.5607650
Treating heart attacks with blood thinners - What do patients PREFER?
A myocardial infarction, or what is commonly known as a ‘heart attack’, happens when the large blood vessels that support the heart (known as the coronary arteries) are blocked and a part of the heart is deprived of oxygen. The blockage of your arteries is caused by a buildup of blood fats (cholesterol) and other substances in the artery walls. Without oxygen, muscle cells in the heart begin to die, which means you need to have medical treatment as soon as possible.
In this study, we asked more than 300 patients about their preferences- approximately half in the acute stage and half in the chronic stage of their disease. Most of them were men, on average, 64 years old. Many of the patients also had other medical conditions, like high cholesterol, high blood pressure, or diabetes, and several of them had already used medicines that thin the blood. All patients had been hospitalized after a heart-attack, they were over 18 and living in England. We asked them about their preferences when it comes to heart attack medications. Hoping to find how much value a person gives different risks and benefits of a particular treatment, and how they balance between them.
Pinto, CA & Tervonen, T. Treating heart attacks with blood thinners: What do patients PREFER?, Zenodo. 2022. DOI: 10.5281/zenodo.5840266
Treating non-small cell lung cancer: What do patients PREFER?
Non-Small Cell Lung Cancer is sometimes called non-small cell lung carcinoma, or NSCLC for short) is the most common form of lung cancer and among the deadliest. It represents approximately 85% of all types of lung cancer worldwide and only 21.7% of patients diagnosed with this type of cancer are alive five years after being diagnosed. In order to help patients, different types of treatments are available for this condition. Traditional medical treatments for advanced stages of non-small cell lung cancer include chemotherapy and/or targeted radiotherapy. Now, there is a promising new type of treatment called immunotherapy.
We wanted to learn about lung cancer patients’preferences for new treaments, and what they considered to be the maximum acceptable risk, and the minimum acceptable benefit of a treatment.
Smith M, Oliveri S & Casiraghi M, Treating non-small cell lung cancer: What do patients PREFER?, Zenodo, DOI: 10.5281/zenodo.6260511
More case study summaries
There are many ways to return results to patients and summarise results in plain language for non-expert audiences. Some of the PREFER clinical patient preference case studies have used other routes.
Results of the qualitative work in the PAVING study on gene therapies in haemophilia was returned to Belgian patients in a summary that was published by the Belgian patient organisation Vereining van hemofilie- von Willebrandpatiënten en andere stollingsstoornissen (AHVH). The summary can be found on their website: De meeste hemofiliepatiënten staan positief tegenover gentherapieën,
Results form the chronic pain study were published in on the journal Osteorarthritis and Cartliage, with a plain language summary as a complement to the publication. Unfortunately, this material is not available open access, but for those who have a subscription, the authors described the rationale behind the summary in a letter to the editor with the summary also available for download from the journal: Identifying factors that people in the USA feel are most important when choosing a treatment for osteoarthritis or chronic low back pain.