Patient information resources

Resources

Our main free information resource for patients is “Aortic Dissection: the Patient Guide”.

This provides all of the information that you, your family and carers need to know after experiencing an aortic dissection.

You can get a copy of Aortic Dissection: The Patient Guide as follows:

  • If you are a recent AD patient, you should be given one by your aortic centre before you leave hospital.
  • You can also download the PDF version here.
  • If you are not a recent AD patient and you would like a paper copy, we are planning to make the Guide available for sale online – watch this space for details.

Aortic centres can also bulk order their patient copies using this form


General Online information

The internet has many resources available on aortic dissection. One authoritative source designed specifically for those who have suffered an aortic dissection is the IRAD (International Registry of Aortic Dissection) site: livingwithdissection.iradonline.org

A number of abbreviations and acronyms are used in aortic medicine. Aortic Hope in the USA publishes an excellent glossary: www.aortichope.org/post/glossary-of-thoracic-aortic-conditions


Exercise

Activity recommendations

A classic paper is “Activity Recommendations for Post-Aortic Dissection Patients”, by Chadda et al., Circulation. 2014;130:e140-e142:  which is based on the ‘METs’ approach.

www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.113.005819

See also the IRAD web site page at livingwithdissection.iradonline.org/physical-information/

Online cardiac rehabilitation courses

Are available from the British Heart Foundation web site – see www.bhf.org.uk/informationsupport/support/cardiac-rehabilitation-at-home

Further cardiac rehabilitation classes

Sometimes called ‘Phase 4’ classes. These are listed at phase-4.cardiac-rehabilitation.net The nurses from your NHS cardiac rehabilitation class (sometimes called Phase 3 classes) should also know if there is one near you. You should only use a Phase 4 class that is BACPR approved.


Blood pressure

A useful BHF web page and video on taking your blood pressure www.bhf.org.uk/informationsupport/support/manage-your-blood-pressure-at-home#measure

AHA/AMA poster with seven tips on how to take an accurate blood pressure reading: www.targetbp.org/tools_downloads/mbp/?media_dl=1066

Blood pressure monitors: BHF guidance at www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/tests/blood-pressure-measuring-at-home


Warfarin

NICE guidelines on warfarin management are available at cks.nice.org.uk/topics/anticoagulation-oral/management/warfarin/

Home monitoring is discussed at www.nice.org.uk/guidance/dg14/chapter/1-Recommendations


Visiting the Dentist

Antibiotic protection for dental and other work: NICE Guidance CG64 www.nice.org.uk/guidance/cg64 applies, plus the Scottish Dental CEP Implementation Advice on CG64, which clarifies CG64 – www.sdcep.org.uk/published-guidance/antibiotic-prophylaxis/


Genetics

The NHS criteria qualifying you and your relatives for genetic testing can be found at:

www.england.nhs.uk/wp-content/uploads/2018/08/rare-and-inherited-disease-eligibility-criteria-v2.pdf

You should refer to section “R125 Thoracic aortic aneurysm or dissection.”

Regular updates on genes affecting aortic dissection are published roughly annually. The following scientific papers are the most recently published.

2021: Milewicz DM, Guo D, Hostetler E, Marin I, Pinard AC, Cecchi AC. Update on the genetic risk for thoracic aortic aneurysms and acute aortic dissections: implications for clinical care. J Cardiovasc Surg 2021;62:203-10.  doi.org/10.23736/S0021-9509.21.11816-6

2020: Thakker PD, Braverman AC. Cardiogenetics: genetic testing in the diagnosis and management of patients with aortic disease Heart 2021;107:619–626. doi:10.1136/heartjnl-2020-317036 heart.bmj.com/content/107/8/619

2019: Vinholo TF, Brownstein AJ, Ziganshin BA, Zafar MA, Kuivaniemi H, Body SC, Bale AE, Elefteriades JA. Genes Associated with Thoracic Aortic Aneurysm and Dissection: 2019 Update and Clinical Implications. AORTA 2019;7:99–107.  doi.org/10.1055/s-0039-3400233


Mental health

PTS and PTSD

Critical Illness, Intensive Care and Post-Traumatic Stress Disorder are covered in the booklet at www.psychologytools.com/resource/critical-illness-intensive-care-and-post-traumatic-stress-disorder-ptsd/ (free resource)

CBT guidance and workbooks

An excellent guide to the Cognitive Behavioural Therapy approach to dealing with post-AD mental difficulties is ‘Reclaim Your Life’, by Dr Chris Williams, available via store.llttf.com/product/reclaim-your-life-from-illness-disability-pain-or-fatigue-2nd-edition/

The Australian CCI organisation and website is also well-respected: www.cci.health.wa.gov.au/Resources/Looking-After-Yourself

Progressive relaxation and relaxed breathing

Progressive relaxation and relaxed breathing techniques may be used to overcome stress:

www.psychologytools.com/resource/progressive-muscle-relaxation/

www.psychologytools.com/resource/relaxed-breathing/  (Both free resources by signing up to a free account)

Note: full access to the full range of Psychology Tools’ material is usually possible via a CBT therapist.

Counselling registration bodies

There are many professional accreditation and registration bodies in the UK covering different sorts of counselling. The following bodies are likely to be an initial choice, though this list does not give personal recommendations:

The British Association for Behavioural and Cognitive Psychotherapies (BABCP) is the lead organisation for CBT in the UK and lists BABCP accredited CBT therapists and psychologists www.babcp.com

EMDR is one mode of treatment for PTSD.  For EMDR therapists, check www.emdrassociation.org.uk

Typically, longer-term therapies would be covered by the British Association for Counselling and Psychotherapy (BACP) www.bacp.co.uk/

Other bodies, including those aimed at a specific country, such as Scotland, are listed at www.counselling-directory.org.uk/accreditation.html#registrationaccreditation

Counsellors accredited by these bodies may work in the NHS and/or in private practice.

Aortic Dissection Awareness UK & Ireland is the national patient charity for Aortic Dissection in the UK & Ireland.

Aortic Dissection Awareness Day UK happens every 19th September - see our Events page.

THINK AORTA is Aortic Dissection Awareness UK & Ireland's campaign in emergency medicine

www.thinkaorta.net

Aortic Dissection Awareness UK & Ireland is a registered charity in England and Wales (number 1198617)

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