We value co-ordinated care and information
Patients’ views on receiving genetic information
Sarah Burke Peter Farndon Catherine Bennett Julie Bedward CRMDE, University of Birmingham; NHS National Genetics Education and Development Centre
Background
• NHS National Genetics Education and Development Centre
– Involving patients and their families in informing all aspects of their work
– Focus group of patients in 2005: the value of patients telling their stories and sharing their experiences
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Aims
• To find out about people’s experiences of receiving genetic information
Where do patients get genetic information?
• To find out their views and preferences regarding receiving genetic information
Where do patients want to get genetic information?
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Methods
• Telephone interviews • 27 people with or at risk of genetic conditions and parents of children affected by a genetic condition • Approached through patient organisations and consultation groups • Range of perspectives
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Results
The value of co-ordinated care and information
– A holistic approach
– Support after receiving information
– Communication with colleagues – A range of information providers
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
A holistic approach
• Fragmentation between different specialties • Lots of specialties may be involved • Need for more holistic approach and greater co-ordination of care and information
There certainly didn’t seem to be any communication between the for Health specialists various Supporting Genetics Education
www.geneticseducation.nhs.uk
Support after receiving information
• Lack of support after being given genetic information
We were just left to it really, to deal with it
• Where support and information was provided, described as “transformative”
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Communication with colleagues
• Healthcare professionals not expected to know everything… • …but should be willing to consider the possibility of a genetic condition… • …and should be willing to communicate with colleagues and refer appropriately
It’s about honesty, and you know just saying “well I’m not sure what it is, okay let’s just point you in the right direction” for Health Supporting Genetics Education
www.geneticseducation.nhs.uk
Range of information providers
• With hindsight, who would you have preferred to have received genetic information from? – Consultant specialist they know and trust:
You build up a very personal relationship with the cardiologist… the trust is immense
– Geneticist with detailed, up-to-date information:
The only person who can answer those questions is a geneticist
– An expert in the actual condition:
Things change from year to year
– Role of GP to direct to appropriate specialists
You can’t possibly expect them Education this level of specialist knowledge Supporting Genetics to have for Health
www.geneticseducation.nhs.uk
Advice for information providers:
• Make sure genetic information is up-to-date • Provide information in a non-judgemental and unbiased way • Be mindful of use of terminology (e.g. “mutant”) • Be aware that genetic information can have an emotional impact on families and may affect the wider family • Inform people where they can access further information
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Educational Initiatives
• Royal College of General Practitioners curriculum statement “Genetics in Primary Care”(2007)
• National Workforce Competences for Genetics in Clinical Practice for Non-Genetics Healthcare Staff (Joint Project with Skills for Health)
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Genetics in Primary Care
• Identifying patients
• Clinical management
• Communicating genetic information
‘Genetics in Primary Care’
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Genetics Competences
1. Identify where genetics is relevant in your area of practice 2. Identify individuals with or at risk of genetic conditions 3. Gather multi-generational family history information 4. Use multi-generational family history information to draw a pedigree 5. Recognise a mode of inheritance 6. Assess genetic risk 7. Refer individuals to specialist sources of assistance in meeting their health care needs 8. Order a genetic laboratory test 9. Communicate genetic information to individuals, families and healthcare staff
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
Conclusions
Messages from patients: • Think genetics • Communicate with colleagues and refer appropriately • Would welcome support after being given genetic information
Supporting Genetics Education for Health www.geneticseducation.nhs.uk
For more information:
www.geneticseducation.nhs.uk S.E.Burke@bham.ac.uk
Supporting Genetics Education for Health www.geneticseducation.nhs.uk