Appendix 1: Instructions for task 1
Patient involvement in the initial coding of data from selected qualitative papers
Introduction
We have gathered together papers which describe research that have interviewed patients or members of the public about their perceptions of risk and their thoughts about tests to predict future risk. We were unable to find any studies which talked about RA but we did find a few studies which talked about diabetes. We think that we could learn a lot from the studies that have taken place in other diseases such as diabetes, therefore, we’d like your help in summarising these papers.
Patient research partner instructions
The instructions below are a brief guide to give you an idea about what we’d like you to do. In addition to the instructions below, Rebecca will call you to talk you though each of these steps.
The aim of this task: We’d like to get your thoughts on the issues other studies in this area have found. We have summarised three research studies in the area of diabetes where people have describe their thoughts and beliefs about risk, and how they would feel about predictive testing. We’d like you to summarise the results section of each paper, understand the issues which are important to people who are at risk and who may be considering predictive testing:
How to summarise: In the document titled “activity 1 research paper results section you will find the results section of 3 papers. The results section presented in this document containing quotations from people interviewed about risk and predictive testing.
The results section also contains the thoughts of the authors, who describe concepts which they believe are important to the people interviewed. We’d like you to read through the results sections of the papers and write do your thoughts about what the researchers and people who took part in the studies are trying to communicate.
You don’t have to do all of the papers, if you feel that there’s too much work involved.
It would also help if at the end of the paper you could summarize what you feel the main issues you can see being explored in each of the papers.
We’d recommend reading the paper in small sections, and then writing a brief summary or a few words to describe the thoughts, feelings, process or behaviours being described.
When looking at each paragraph of text within the results section consider the following questions:
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What is going on?
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What is the person trying to communicate?
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What is the person saying?
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What assumptions can we make about this piece of text?
Examples of how to summarise: Below are a few examples of how other people have either coded text using a pen and paper, or have used a computer to do their coding:
Example 1. In this example the person summarising has chosen to print off the papers and use a pen and paper to write a few words about each paragraph. The person summarising has also highlighted important sections.
Example 2. This person has chosen to use the computer using comment boxes, to do this go to the review option in word, highlight the section of text that you want to comment on and then and select new comment.
Once you have summarised as many of the papers as you feel you want to do, please feedback your work to the research team.
Appendix 2: Instructions for task 2 (focus group)
Perceptions of predictive testing in those at risk of developing common chronic inflammatory conditions: a qualitative literature synthesis
Background
The availability of tests to predict the risk of developing chronic illness in the future is increasing. In addition, the precision and accuracy of these tests are being improved. As these tests increase in availability and precision, people who are at risk have new opportunities to understand whether they are likely to develop certain conditions in the future. The decision about whether to engage in predictive testing is often a personal one which may be driven by personal preferences for the management of risk (and risk related information), personality type and peoples personal understanding of risk and the meanings associated with being labelled as an “individual at risk”.
Previous qualitative research studies have been undertaken to explore perceptions of risk in at risk individuals, generating a broad range of important themes and topics important to consider before introducing new testing technologies. Reviews of the qualitative literature have been undertaken within the field of cancer where the area of predictive testing is seen a paramount for the early detection and treatment of disease. The themes identified within this review revealed that emotional, family and sociocultural factors can influence how patients perceive the tests. However, it is not known whether patients at risk of non-malignant disease feel the same way. Furthermore, new tests to predict the development of common chronic inflammatory diseases such as rheumatoid arthritis, and diabetes have been developed. Understanding patients’ perceptions of predictive testing for chronic inflammatory disease is paramount if new technologies are to be accepted and utilised by those at risk. However, to date, no review of the qualitative literature on patients perceptions of predictive testing for common chronic inflammatory has been undertaken.
Aims of the review
The aim of the review is to identify research papers which have used qualitative methods (interview or focus groups) to explore perceptions of predictive testing. The research papers included in our review focus on the perceptions of:
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1.
Relatives of individuals with the disease
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2.
Individuals with early symptoms
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3.
The general public
The diseases of interest for this review are common chronic inflammatory (non-malignant) diseases for which there are genetic and environmental risk factors, including the following:
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1.
Rheumatoid arthritis, SLE, Sjogren’s syndrome, Ankylosing spondylitis
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2.
Diabetes
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3.
Psoriasis
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4.
Asthma
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5.
Inflammatory bowel disease (Ulcerative colitis, Crohn’s disease)
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6.
Multiple sclerosis
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7.
Cardiovascular disease
The review procedure
Databases containing the details of published papers were searched. Because databases hold information about different papers, multiple databases were searched including MEDLINE, PSYCH-info and CINHAL. The following search terms were used across the databases above to identify relevant articles:
Perception, predictive testing, genetic, testing, risk, develop, developing, future, Rheumatoid Arthritis, SLE, Sjogren’s syndrome, Ankylosing, Spondylitis, Diabetes, Psoriasis, Asthma, Inflammatory bowel disease Ulcerative colitis, Crohn’s disease, Multiple sclerosis, Cardiovascular disease, relative, family, sibling, family history, individual, individuals, patient, people, early symptoms, symptoms, general public, people, population, healthy, qualitative.
The search strategy identified 51 potentially relevant articles. Kerin Bayliss (University of Manchester) searched through the titles and the abstracts (summaries) of the research articles to identify 10 articles at were relevant to the aims of our review.
Data synthesis
Kerin Bayliss initially extracted all of the relevant themes represented across the selected papers. Rebecca Stack then reviewed the papers and the extraction of themes to confirm the appropriateness of the selection of themes and the relevance of the content of the themes to the reviews primary aims.
Two (at present) patient research partners reviewed three of the selected research articles. Patient research partners coded and summarised the core themes represented in the results section of the selected articles. Kerin and Rebecca reviewed the feedback from patient research partners and absorbed the feedback and recommendations from patient research partners in to the initial thematic framework.
Draft themes and sub themes
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1.
Perceived benefits of predictive testing
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a.
Belief that predictive testing is reliable and effective
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b.
Enables the patient to gain access to an earlier diagnosis and targeted therapies
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c.
Potential to motivate behaviour change (I will break this down to compare patients with high/medium/low motivation to change before the test; and behaviour change in those who receive a positive or negative test result)
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d.
An opportunity to engage in altruistic behaviour
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2.
Barriers to the uptake of predictive testing
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a.
Potential for discrimination
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b.
Not appropriate or relevant for all conditions
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c.
Not appropriate for all people (e.g., those without symptoms, without a family history of the condition)
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d.
Negative perceptions of the test itself (i.e., time consuming, need to fast. I’ll explore the different types of tests used)
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3.
Lack of knowledge about predictive testing
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a.
Limited understanding of risk and the need for predictive testing
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b.
Limited understanding of what the results of the test mean
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c.
Conflicting views between patients and health professionals
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4.
Perceived impact of predictive testing
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a.
Predictive testing can have an emotional impact (I will explore which patients/conditions experience a low vs high emotional impact and the reasons for this)
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b.
Levels of anxiety (I will explore which patients/conditions experience a reduction/increase in anxiety and the reasons for this)
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c.
Impact of test results on family relationships
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5.
Recommendations for practice
In order to learn from good practice and reduce the barriers to predictive testing to quantify risk, the literature suggests:
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a.
Need for a patient centred approach
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b.
Location should be considered
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c.
Need to educate patients and their families about predictive testing
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d.
Results should be provided by a specialist
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e.
Lifestyle intervention programme should be considered
Meeting on 6
th
February
In preparation for the meeting on 6th February you may find it helpful to read through the results section of the papers included in the review (attached to your email) to see if you agree with the themes and sub themes above. We will go through these themes in more detail on the 6th and there will be plenty of opportunity for discussion.
Questions you might want to consider include:
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Do these subthemes look logical?
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Based on your experience as a patient do these themes reflect reality?
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Do you think there are any important concepts described within these subthemes?
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Do you think that the overall theme or subthemes can be changed in anyway?
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Do you think that our meaning/interpretation of the quotes within the papers can be changed?
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What could be the implications of these findings for those at risk of developing Rheumatoid Arthritis in the future?