June 18, 2013 Psych-Social THE HARMONIZATION OF ASSESSMENT AND ACCEPTANCE CRITERIA FOR LIVING KIDNEY DONORS PARTICIPATING IN THE CANADIAN TRANSPLANT REGISTRY – LIVING DONOR PAIRED EXCHANGE PSYCH-SOCIAL QUESTIONNAIRE Sub-Sections: 1. Psych-Social History Questionnaire This report was informed by discussions and consensus reached at the April 11-12, 2013 Workshop on the Harmonization of Living Donor Assessment and Acceptance Criteria. 1|Page June 18, 2013 Psych-Social 1. 2. 3. 4. 5. PSYCH-SOCIAL QUESTIONNAIRE The psych-social interview should be conducted with the donor candidate in a face to face meeting by a psychologist or social worker knowledgeable about living donation and a member of the living donor clinical team. Donor candidates are informed in a separate discussion of their rights & informed consent process, and who will have access to the information obtained in the interview. Consent is an ongoing process and donors can change their minds at any time during the process and will be supported by the donation team. The interview should: Address the potential situation where a person makes a donation in an LDPE chain and the recipient they are hoping to receive a kidney in the paired chain fails. Collateral Information is obtained for each potential donor from the following sources: a. b. c. d. e. Review of the medical chart Contact family physician Contact donor’s partner Contact donor’s self-identified support people re: adult children, extended family, parents Collateral information is obtained following completion of the semi-structures interview. (Note: Ideally there are at least two, personal collateral contacts. Usually the family physician and either a key support person or family member are required to validate that the proposed candidate does not have any major psychological disorder.) 6. Appropriate releases of information are secured for contacts other than access to donor’s medical chart. 7. In the event that two family members wish to consider non-directed donation, those assessments would be done simultaneously, on the same day, and ideally by two different assessors. 8. If the two different assessors are not available, then they can be assessed by the same individual however, they again need to be assessed on the same day to avoid cross contamination of the clinical interview process. 9. The final psych-social report must include the completed questionnaire to the living donor program must address in the summation paragraph: Whether the donor candidate would profit or gain from the donation process Whether there had been any coercion for the donor candidate coming forward to consider donation Whether the donor candidate would incur any financial burden due to participating in the living donor paired exchange process. Whether the donor candidate has a good comprehension of the benefits and risks of being a living donor. Whether the donor candidate is aware of the risk of exacerbation of any underlying psychological issues. (Note: The presence of psychological issues – excluding substance abuse and suicidality, is not necessarily a contraindication for donation if the donor candidate is aware of the risks and has a plan for handling any post-operative exacerbations of symptoms.) 10. Post donation follow-up is offered at 6 weeks and 3 months post-surgery. References Health Canada Regulations Qualifications for administering the Beck Anxiety Survey: http://www.pearsonassessments.com/haiweb/Cultures/enUS/Site/ProductsAndServices/HowToOrder/Qualifications.htm 2|Page June 18, 2013 Psych-Social PSYCH-SOCIAL QUESTIONNAIRE Date (s) of Assessment First Name (Legal): Middle Name (Legal): Preferred Name: Surname (Legal): Birthdate: …………./………..…/………………… (Day) (Month) (Year) Personal Health Insurance No. / Care Card No.: Ethnic origin(s):………………………………… First Language…………………………………… Email address: If you have not previously provided the following information, please complete the section below: Home Address:……………………….......................................................................................... …………………………………………………………………………………………………………………………………….. …………………………………………………………………………………………………………………………………..…. Home phone number: Cell phone number: Work phone number: Fax number: Family Doctor Name: ……………………………………….……………………… Address: …………………………………………………………………………………………………………………………………….…..… Telephone: …………………………............. Fax: ……………………………………….. SECTION 1: KIDNEY DONATION INFORMATION 1. 1.1 Are you willing to travel outside the city or province for donation? 1.1.1 If no, explain: ………………………………………………………………………… Yes No PAIRED DONOR /RECIPIENT ONLY 2. 3. 2.1 What is the name of your intended paired recipient? ........................................... 2.2 What is your relationship to the intended recipient? …………………………………………. 2.3 Have you discussed your wish to donate with the intended recipient? 2.4 Have you discussed your wish to donate with your family physician? 2.5 Have you discussed your wish to donate with your family / friends? 2.6 Are the above supportive of your wish to donate? 2.6.1 If yes, explain why they are supportive? ……………………………………………………….. …………………………………………………………………………………………………………………………………….. 3.1 Do any of your support people have concerns about you donating? 3.1.1 If yes, explain their concerns about you donating. ………………………………………… ……………………………………………………………………………………………………………………………………… Yes Yes Yes Yes No No No No Yes No 3|Page June 18, 2013 Psych-Social 4. 4.1 Are there significant people in your life you have not discussed your interest in donation with? 4.1.1 If yes, why have you not discussed your interest in donation with them? ……. …………………………………………………………………………………………………………………………………….. Yes No NON-DIRECTED DONOR ONLY 5. 5.1 As a non-directed donor, what expectations do you have re: contact with the kidney recipient? ……………………………………………………………………………………………………………………… 5.2 Would you want to contact the recipient? 5.3 How do you feel about media coverage? …………………………………………………………….... ………………………………………………………………………………………………………………………………..……. 5.4 Who will you tell about your donation? .................................................................... ……………………………………………………………………………………………………………………………………… Yes No ALL POTENTIAL DONOR CANDIDATES 6. 6. 7. 8. 6.1 Why do you wish to donate? …………………………………………………………….................... ………………………………………………………………………………………………………………………….………… 6.2 Did you initiate contact with the Living Donor Program without prompting from someone else? 6.2.1 If yes, what made you decide to contact them at this time? ………………….. …………………………………………………………………………………………………………………………… 6.2.2 If no, how did you hear about the Living Donor Program? …………………… ……………………………………………………………………………………………………………………….. Yes No 6.1 What is your understanding of kidney donation? (Surgical/psychological risks) ……………………………. …………………………………………………………………………………………………………………….………………………………….……… …………………………………………………………………………………………………………………….………………………………….……… …………………………………………………………………………………………………………………….………………………………….……… 7.1 What is your expectation for yourself post-donation? ................................................................. ……………………………………………………………………………………………………………………………………………………………….. ……………………………………………………………………………………………………………………………………………………………….. 8.1 What is your expectation of the recipient post-donation? (Contact post-donation with recipient?) …………………………………………………………………………………………………………………….………………………………….……… …………………………………………………………………………………………………………………….………………………………….……… …………………………………………………………………………………………………………………….………………………………….……… SECTION 2: PERSONAL HISTORY 9. 10. 11. 9.1 Where were you born? …………………………………………………………………………………………………………………… 9.2 What do you now call your “hometown”? ……………………………………………………………………….……………… 10.1 How far did you go in school? Post-secondary education? Community College? Certificate/trades training? ……………………………………………………………………………….................................................................... 11.1 Do you subscribe to a particular faith tradition? Yes No 11.1.1 If yes, would that have any impact on the time of donation? Yes No 11.1.2 If yes, can you describe for me how it would impact? …………………………… …………………………………………………………………………………………………………………….. …………………………………………………………………………………………………………………….. …………………………………………………………………………………………………………………… 4|Page June 18, 2013 Psych-Social 12. 13. 12.1 Are you the primary caretaker for a dependent child or adult? 12.1.1 If yes, tell me more about this situation: ………………………………………………… …………………………………………………………………………………………………………………………… …………………………………………………………………………………………………………………………… …………………………………………………………………………………………………………………………… 13.1 Do you have children? 13.1.1 If yes, tell me their ages and any general health concerns: Age 14. 15. 16. 17. 18. 19. Health Concerns Yes No Yes No Psychological Concerns Children M/F M/F M/F M/F M/F M/F 14.1 How would you describe your relationship with your children? …………………………………………………… ……………………………………………………………………………………………………………………………………………………………….. ……………………………………………………………………………………………………………………………………………………………….. 15.1 Do you have siblings? Yes No 15.1.1 If yes where are you in the birth order? …………………………. 16.1 Tell me about your siblings, oldest to youngest. Siblings Age Health Concerns Psychological Concerns M/F M/F M/F M/F M/F M/F 17.1 How would you describe your relationship with your siblings? ………………………………………………………. ………………………………………………………………………………………………………………………………………………………………….. ………………………………………………………………………………………………………………………………………………………………….. 18.1 Tell me about your parents. Parents Age Health Concerns Psychological Concerns Mother Father Step-Mother Step-Father 19.1 How would you describe your relationship with your parents/step-parents? ……………………………….. ………………………………………………………………………………………………………………………………………………………………… SECTION 3: FINANCIAL ASSESSMENT 20. 20.1 Do you have a spouse/partner 20.1.1 If yes, does your spouse/partner work? 20.1.2 If yes, what do they do? …………………………………………………… Yes No Yes No 5|Page June 18, 2013 Psych-Social 21. 22. 23. 24. 25. 26. 27. 28. 21.1 What is your Income? ……………………….. 21.2 What is your spouse/partner’s income? ……………………….. 22.1 Did you read the (list Province name here) donor expense reimbursement Program information? Yes No 22.2 Do you understand or have questions about its limitations in terms of the reimbursement policy for your expenses? Yes No 22.2.1 If yes, tell me about these: …………………………………………………………………… …………………………………………………………………………………………………………………………. ………………………………………………………………………………………………………………………….. 23.1 Are you aware you will pay for all expenses yourself and be reimbursed at a later date, to the maximums specified in the policy? 23.2 Are you aware that there may be some expenses that are not reimbursed or not reimbursed entirely? 24.1 Will your income decrease when you donate if you are unable to work for 4-6 weeks or more? 25.1 Do you anticipate potential financial difficulties from donating? Yes No Yes No Yes No Yes No 26.1 Do you have a plan in place to provide a financial safety net for yourself and/or your family if you donate? Yes No 26.1.1 If yes, tell me about this: …………………………………………………………………..… ……………………………………………………………………………………………………………………….. 27.1 Do you know what impact (if any) your donation will have on any life insurance policy you may have? Yes No 28.1 Have you worked enough hours to qualify for EI Sick benefits? Yes No SECTION 4: FAMILY OF ORIGIN AND NUCLEAR FAMILY MEDICAL HISTORY 29. 29.1 Does your Family of Origin (grandparents, uncles, aunts, cousins, parents) have a history of any serious health issues (i.e., heart disease, diabetes, cancer, strokes)? Yes No 29.1.1 If yes, please outline: ………………………………………………………………………………. …………………………………………………………………………………………………………………………… …………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………..… 30. 30.1 Does your spouse/partner have a history of any serious health issues? 30.1.1 If yes, please provide further information: …………………………………………… ……………………………………………………………………………………………………………….. ………………………………………………………………………………………………………………. Yes No 31. 31.1 Does your spouse/partner’s family have a history of any serious health issues? 31.1.1 If yes, please explain: …………………………………………………………………………… ………………………………………………………………………………………………………………………… ……………………………………………………………………………………………………………………….. Yes No 32. 32.1 How would you describe your health? ………………………………………………………………………… ………….............................................................................................………………………………… ……………………………………………………………………………………………………………………………………… 6|Page June 18, 2013 Psych-Social 33. 34. 35. 36. 37. 33.1 Do you have a routine exercise program? 33.1.1 If yes, please describe: …………………………………………………………………………………… ………………………………………………………………………………………………………………………… 34.1 Can you walk up 2 flights of stairs without stopping or becoming winded? 35.1 Have you recently experienced any of the following: a. Memory loss or ever had seizures b. Periods of confusion c. Sudden unexplained anxiety or personality changes d. Visual changes e. Hallucinations f. Spontaneous rippling or twitching of parts of a muscle without full muscle contraction (Myoclonus) g. Unsteadiness of gait (ataxia) h. Speech problems (aphasia) 35.1.1 If yes to any of the above, please explain: …………………………………………….. ……………………………………………………………………………………………………………………………….. 39. 40. 41. Yes No Yes Yes Yes Yes Yes Yes Yes Yes No No No No No No No No 36.1 Do you currently drink alcohol? 36.1.1 If yes, how much do you drink a day and a week? ........................... 36.2 Did you consume alcohol in the past but not now? 36.2.1 If yes, how long ago was that? ......................................... 36.2.2 How much did you drink? …………………………………………… 36.2.3 Why did you stop drinking? …………………………………………………………………… ………………………………………………………………………………………………………………………….. Yes No 37.1 Do you currently smoke? 37.1.1 If yes, What do you smoke? …........……………………………………………………… 37.1.2 How much do you smoke? ……………………………………………. 37.1.3 How long have you been smoking? ...................................... Yes No 37.2 If no, did you smoke in the past? 37.2.1 What did you smoke? ………………………………………………………… 38. Yes No 37.2.2 How much did you smoke? ............................................................... 37.2.3 When did you quit smoking? ………….................................................. 38.1 In the past have you or any sexual partner ever used a needle to inject drugs into your veins, muscle, or under the skin for non-medical use? 38.1.1 If yes, please explain when this was: ……………………………………………………… ............................................................................................................................. 39.1 Have you used any recreational drugs such as cocaine, heroin, crack, LSD, Crystal Meth, bennies, uppers, downers, marijuana, hashish, speed, ecstasy or anabolic steroids or misused prescription drugs? 39.1.1 If yes, what were the drugs and when did you last use them? ……………… ………………………………………………………………………………………………………………………….. …………………………………………………………………………………………………………………………… 40.1 Have you ever been admitted to an alcohol and drug treatment program? 40.1.1 If yes, can you describe when that was and what the program was for? … …………………………………………………………………………………………………………………………… …………………………………………………………………………………………………………………………… 41.1 In the past 12 months have you ever been in a correctional facility, prison, or jail? 41.1.1 If yes, when and for how long? …………………………………………………………….. Yes No Yes No Yes No Yes No Yes No Yes No 7|Page June 18, 2013 Psych-Social 42. 42.1 In the last 12 months, how many sexual partners or intimate partners have you had? …………………………………………………… 42.2 In the past 6 months have you had sex with someone whose sexual background you did not know? Yes No MALE DONORS 43. 43.1 Have you had sex with a man in the past 5 years? Yes No ALL DONORS 44. 45. 46. 44.1 At any time have you or your sexual partner(s) had sex with someone who has AIDS? 44.1.1 If yes when did it occur? ……………………………... 44.2 At any time have you or your sexual partner(s) had sex with someone who has tested positive for HIV, HTLV 1 or AIDS? 44.2.1 If yes, when did this occur? …………………………….. 45.1 At any time have you or any partner ever exchanged sex for money or drugs? 45.1.1 If yes, when was this? …………………………………….. 46.1 Have you ever used alternative medical treatment – acupuncture / herbal remedies? 46.1.1 If yes, please describe: ………………………………………………………………………………. ……………………………………………………………………………………………………………………………… Yes No Yes No Yes No Yes No SEACTION 5: PSYCHOLOGICAL HISTORY 47. 48. 49. 50. 51. 52. 47.1 Have you ever been diagnosed with or treated for a mental/psychiatric / or an emotional disorder? 47.1.1 If yes, please tell me what it was? ………………………………………………………… 47.1.2 When was this and how long ago? ...................................................... 48.1 Have you ever been in therapy/counseling with a psychologist, clinical social worker, or certified counselor? 48.1.1 If Yes, when did this occur? …………………………………………………………………… 48.1.2 What was the name of your therapist/counselor? ………………………………. ………………………………………………………………………………………………………………………….. 49.1 In the past 5 years have you ever been prescribed anti-depressants, anti-anxiety, pain medications, uppers/downers, or other similar medications by a physician? 49.1.1 If yes, what was the medication and dosage………………………………………… …………………………………………………………………………………………………………………………. 50.1 Have you been diagnosed with depression or an anxiety disorder in the past or present? 50.1.1 If yes, please describe: ………………………………………………………………………… …………………………………………………………………………………………………………………………. ………………………………………………………………………………………………………………………… Yes No Yes No Yes No Yes No 51.1 Have you ever been suicidal or thought things would be better if you weren’t here? Yes No 51.1.1 If yes, tell me more about this: ………………………………………………………………. …………………………………………………………………………………………………………………………… …………………………………………………………………………………………………………………………… …………………………………………………………………………………………………………………………… 52.1 What would you identify as the most difficult emotional period in your life? ………….………………………. ………………………………………………………………………………………………………………………………..……………………………….. ………………………………………………………………………………………………………………………………………………………….……… 8|Page June 18, 2013 Psych-Social 53. 53.1 Tell me how you coped at that time? ………………………………………………………………………………………………. ………………………………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………………..……..………. …………………………………………………………………………………………………………………………….………………………………..… 54. 54.1 Is there any reason why you think you should not be a living kidney donor? Yes No 54.1.1 If yes, please explain? ……………………………………………………………………………… …………………………………………………………………………………………………………………………… …………………………………………………………………………………………………………………………… ………………………….……………………………………………………………………………………………….. For Office use only: Followup:________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ In my opinion there is no evidence that the donor candidate would: Profit or gain from the donation process; Was coerced into considering donation; or Would incur any financial burden due to participating in the living donor paired exchange process; and The donor candidate fully comprehends the medical and psychological benefits and risks Questionnaire completed by:___________________________ Date: ____________________ 9|Page