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Creating a decision aid to help people with genetic eye disease make reproductive medicine choices


Department of Neuroscience

About the Project

The student will develop a patient decision aid to assist people with genetic eye disease in making reproductive medicine choices. Reproductive medicine options, such as prenatal diagnosis (PND) and preimplantation genetic diagnosis (PGD), can enable people affected by a genetic eye disease to have an unaffected child. In PND a sample of amniotic fluid or placenta is taken and tested for genetic variants causing the eye disease, affected pregnancies can then be terminated. In PGD, an embryo is produced by in vitro fertilization and tested for the genetic variant. Only embryos without this variant are implanted into the womb. Data from the European Society of Human Reproduction and Embryology suggests that only 2.5% of PGD procedures in Europe were for genetic eye diseases. This is evidence of underutilisation of reproductive medicine by people with genetic eye disease.
A person’s decision on using reproductive medicine is a complex one. Patient healthcare decisions are “preference sensitive”: decisions are made based upon personal appraisal of the risks and benefits of a choice. Theories of decision making suggest that, to make complex healthcare decisions, patients must develop a relevant knowledge base and establish their preference based upon this. Providing accessible information is central to this process. This project will produce an accessible online decision-aid to support choices on reproductive medicine for people with genetic eye disease. Decision aids increase patient understanding of risks and benefits, help patients understand their values relating to the decision and make a decision compatible with these values.
The student will perform a systematic review of the information needs of people with genetic eye disease on reproductive medicine options since this will inform the information content of the decision aid.
Nex the student will undertake a qualitative interview study to understand the information needs of patients on reproductive medicine options and how a decision aid should be presented. We will perform in-depth qualitative interviews to explore people with genetic eye conditions information needs relating to reproductive medicine options. A grounded theory approach will be used in order that a comprehensive overview of perspectives is attained. This will involve an iterative approach to conducting the semi-structured interviews whereby the exact nature of the questions posed may develop between interviews depending on the content and themes that emerge. This process will facilitate exploration of views and concerns until a point of “saturation” is reached, i.e. no new, important perspectives are expressed. A semi-structured interview guide will be created to make sure that a standard set of topics are covered for each participant and to provide prompts to guide the discussion. Interviews will be audio recorded, transcribed and analysed with NVivo12 using thematic analysis. The themes identified will inform the information content and presentation of the decision aid.

The interview and systematic review findings will be synthesised using framework analysis. A prototype decision aid will be developed by incorporating each item from the survey that received a sufficiently high score, while following the 2005 International Patient Decision Aids collaboration Standards (IPDAS) checklist. The decision aid will have 2 broad components: an information section and a Value Clarification Method. The content of the information section will be defined by work package 1 and 2. . The value clarification method component would be interactive. Alpha testing of the prototype decision aid will be then performed. Testing of the decision aid will be performed by 2 groups (one composed of clinicians and the other composed of people with genetic eye disease). Participants will review the decision aid and give feedback via a survey. The survey will ask about factors including content, clarity of presentation and ease of use of the decision aid. Feedback will be incorporated into a final version of the decision aid.

Funding Notes

Funding:
self-funding

Entry Requirements:
Candidates must have a first or upper second class honors degree or significant research experience.

Proposed start date: March 2021

References

Enquiries:
Interested candidates should in the first instance contact Dr Alisdair McNeill, [email protected] 0773238074

How to apply:
Please complete a University Postgraduate Research Application form available here: www.shef.ac.uk/postgraduate/research/apply


Please clearly state the prospective main supervisor in the respective box and select 'Neuroscience' as the department.

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