Sibling Donor Questionnaire 2
Within 24 hours of the stem cell collection
Administration of the Sibling Donor questionnaire
The donor questionnaire should be interview-administered. Standardised instructions should be read out to respondents.
Informed consent
Has written informed consent been obtained? Yes / No
Date of consent: Day / Month / Year
Co-enrolment
Is the participant co-enrolled in other study(s)? Yes / No
Specify details of other study:
(1)Psychological distress
The following questions relate to how you’ve been feeling over the past 4 weeks. In the past 4 weeks:
None of the time / A little of the time / Some of the time / Most of the time / All of the timeAbout how often did you feel tired out of no good reason?
About how often did you feel nervous?
About how often did you feel so nervous that nothing could calm you down?
About how often did you feel hopeless?
About how often did you feel restless or fidgety?
About how often did you feel so restless you could not sit still?
About how often did you feel depressed?
About how often did you feel that everything was an effort?
About how often did you feel so sad that nothing could cheer you up?
About how often did you feel worthless?
(2)Donation experience
The following eight questions will ask you about your donation experience and whether if it was stressful and painful, whether you felt prepared and if you would donate again.
Very stressful / Pretty stressful / Not very stressful / Not at all stressfulIn terms of the way you felt physically during and after the donation, would you say donation was…. / 1 / 2 / 3 / 4
Very worried about your health now / Somewhat worried / A little worried / Not at all worried about your health now
Would you say you are / 1 / 2 / 3 / 4
Yes, totally / Yes, but could have been better prepared / No
Did you feel well prepared for the donation experience? / 1 / 2 / 3
More painful / Less painful / About what you expected
Was the experience / 1 / 2 / 3
More emotionally positive / Less emotionally positive / About what you expected
How was the experience different from your expectations? Was it… / 1 / 2 / 3
Would donate a second time / Would not donate a second time / Unsure
If your sibling recipient needed a second transplant, do you think you would be willing to donate a second time? / 1 / 2 / 3
Encourage someone strongly / Encourage someone a little / Discourage someone a little / Discourage someone strongly
What would your advice be to someone who was considering being a sibling donor? Would you… / 1 / 2 / 3 / 4
(3)Recipient health
The following scale asks you to indicate your knowledge about the health status of your sibling recipient.
Karnofksy scoreNormal, no complaints, no evidence of disease
Able to carry one normal activity with only minor signs or symptoms of disease / 100
90
Normal activity with effort, some signs or symptoms of disease
Able to care for self but unable to carry on normal activity or to do active work / 80
70
Requires occasional assistance, but is able to care for most of his/her own needs
Disease may be progressing rapidly. Requires considerable assistance and frequent medical care. / 60
50
Disabled, requires special care and assistance
Severely disabled, hospitalization is indicated although death not imminent. / 40
30
Hospitalization necessary, very sick, active supportive treatment necessary
Moribund, fatal processes progressing rapidly / 20
10
(4)Guilt and responsibility
Note to interviewer: the following questions should be phrased to assess theanticipated feelings of guilt and responsibility.
Very responsible / Somewhat responsible / Not at all responsibleWould you feel responsible if the stem cells did not work? / 1 / 2 / 3
Very guilty / Somewhat guilty / Not at all guilty
Would you feel guiltyif the stem cells did not work? / 1 / 2 / 3
(5)Better person
The following final 10 questions ask you to indicate how having donated stem cells makes you feel.Note to interviewer: the following questions should be phrased to assess their thoughts and feelings post-donation.
Yes / No- Did you feel like a better person for having donated?
Agree a lot / Agree a little / Disagree a little / Disagree a lot
- Donating stem cells make one feel like he/she is somehow a bigger and more worthwhile person. Do you…
Agree a lot / Agree a little / Disagree a little / Disagree a lot
3. A person willing to donate stem cells is almost a hero. Do you… / 1 / 2 / 3 / 4
Agree a lot / Agree a little / Disagree a little / Disagree a lot
- Donating stem cells was really sort of a high point in my life, making everything seem more meaningful. Do you…
Very worthwhile / A little worthwhile / Not at all worthwhile
- When you think about the stem cell transplant (for which you donated) have you felt…
- Here is a list of the ways some people felt about those who donate stem cells. We’d like you to tell us which is the closest to the way you would describe a sibling stem cell donor.
Anyone who donated stem cells could be called a hero / 1
A person who donates stem cells makes an exceptional sacrifice / 2
Anyone who donates stem cells makes a sacrifice somewhat out of the ordinary / 3
It is generous to give stem cells but anyone should do as much / 4
- Since donating, would you say you think…
More highly of yourself – that you’re a better person than you were before donation / 1
Less highly of yourself / 2
There is no change in the way you think of yourself since donating / 3
Very proud / A little proud / Not at all proud
- When you think about the stem cell transplant, have you felt…
Very brave / A little brave / Not at all brave
- When you think about the stem cell transplant, have you felt…
Very heroic / A little heroic / Not at all heroic
- When you think about the stem cell transplant, have you felt…
(6)Qualitative questions
In addition to the validated measures listed above, the research team designed the following qualitative questionnaire based on previous sibling stem cell and bone marrow donor research.
- Sources of emotional support and use of emotional support services of the hospital?
- Adequacy of emotional support from the hospital:
/ Not at all adequate
/ Moderately adequate
/ Adequate
/ Very adequate
/ Friends/family
/ General Practitioner
- How do you think the hospital can improve donor emotional support?
RBWH SCT donation psychosocial impact Sibling donor questionnaire 2 Page 1
V1.2. 5thDecember, 2016