Genetic Testing (A)

These are some of the important issue need to be covered when handling an issue of genetic testing.

• informed, voluntary decision
• only available to subjects who have reached the age of maturity
• subjects must not be discriminated in any way after the results known
• not part of routine blood investigation without permission, including in symptomatic subjects
• ownership of the results remain with the subject who requested the results
• consent form
• multidisciplinary team involve, including genetic counselor
• select companion
• results should be presented verbally and in written form
• prenatal testing is possible

To know more about Huntington's Disease in particular, a useful site will be at Huntington's Disease Association UK.

Genetic Testing (Q)

You are the SHO in the neuro clinic. Madam S, who is 27 is here to see you today with her father who has recently been diagnosed with Huntington's disease. Madam S wants to speak to you privately about the possibility of a genetic blood test to determine whether she is at risk of developing this disease in later life and when would she expect her symptoms to appear. She also wants regarding the possibility of transmitting the disease to her future offspring.

Your tasks are to obtain her reasons for a genetic test, counsel for this and answer all her queries regarding this test/disease.

Renal transplant (A)

INTRODUCTION

• Spend the first 1-2 minutes introducing yourself and defining the purpose of the encounter. If the surrogate attacked you by saying, "I was expecting to see your consultant. Are you sure you are capable to discuss this matter with me?".. DO NOT PANIC!
• Just say something like this, "I have discussed with my consultant about you coming here. Unfortunately he can't join us today as he has to attend an emergency meeting. Be well assured I will try to answer your queries and convey the result of our discussion with my consultant later." Most of the time, the surrogate will be satisfied with this kind of answer

MAIN CONTENT

• get to know how much she knows about the subject of organ donation and renal transplantation
• ask her what made her come forward - forced by husband or other family member etc.
• once you know how much information she needs.. start telling her some facts (this is where knowledge is useful).
• Tell her the pros of non-related live renal transplant (if the wife is the donour)

- better outcome, matching can be assessed, no delay, so can remove the need for haemodialysis, can be done in a planned condition, does not require transportation, psychological satisfaction that she can get by helping her husband.

• tell her the cons of it - more to the donour.

- small peri and post-operative risks

- long term risk with a single kidney

- risk of developing hypertension

• if the donour agrees, she will be assessed by the transplant team
• briefly inform regarding the life long need for medications for the recipient
• relay possible risk if failure of transplantation as a result of rejection
• possible hidden agenda

- getting transplant in other country ie. China

- not encouraged, not properly assessed, government will not pay for the medications when recipient comes back

- getting other family members to donate

- for living non-related organ transplant - only allowed for husband/wife. Others will need approval from the transplant committee. (in UK it is called Unrelated Live Transplant Regulatory Authority, in short ULTRA)

ENDING

• ALWAYS.. ALWAYS.. SUMMARIZE. Do this by emphasizing regarding reason for the encounter and important points from the discussion.
• do remember to set for another appointment, may it be with the consultant around or other teams.. to get back their feedback
• offer leaflets, websites, contact no. of the transplant team or support group.

Reading a patient information leaflet is helpful for you to be able to explain to the surrogates in laymen terms. For candidates sitting in Malaysia, National Kidney Foundation of Malaysia may help.

Renal transplant (Q)

Mr Lee is a 40-yr-old pt who has ESRD secondary to DM on regular HD 3 x /week for 2 yrs. He is a lawyer in a big law firm. However, since he is commenced on haemodialysis (HD), he has difficulty arranging his time for the HD and his work. He is in the transplant list since 1 yr ago. However, he red the news that the waiting list for a cadaveric kidney transplant is probably about 10 yrs in Malaysia.

He is keen for live renal transplant. However, he is the only son and his parents are both more than 60 yrs old with DM and IHD and was told not suitable as donor.

His wife, Madam Lee, is a healthy 32-yr-old teacher who wish to donate her kidney to her husband. She also wonders whether her husband would benefit from kidney transplant at China.

She comes to see you for advice.

Your task is to explain the pros and cons of non-related live renal transplant and manage her concerns.

HOW WOULD APPROACH YOU THIS?