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The collection of peripheral blood progenitor cells (PBPC) by apheresis has become common in related
allogeneic donors. However, the acceptability of the procedure to donors has not been documented. The
purpose of this baseline case series study was to evaluate the psycho-social dimensions of apheresis from the
perspective of healthy sibling donors and to explore issues surrounding fully informed consent including
voluntary donation. At the first interview to discuss donation, 17 consecutive human leucocyte antigens
(HLA) identical sibling donors who chose to donate PBPC were recruited to the study. They then completed
both scales of the State-Trait Anxiety Inventory. The state scale was completed again immediately before first
apheresis. At the end of the final apheresis, the donors were interviewed again by an independent researcher
using a standardised questionnaire. All aspects of the procedure were well tolerated, including levels of anxiety
and pain. Donors donated even if the relationship with their sibling was poor. However, some areas
for improvement were highlighted. Eight (47%) donors were asked to donate by their sibling or another
close relative, and this gave them no real volunteer status. Written information was judged important by
11 (65%) donors, but the material used was limited. The possibility of a poor outcome for the recipient was
not well understood. The content of the written documentation and the management of confidentiality
in terms of donor volunteer status needed to be addressed. A further study regarding the follow-up needs
of donors, including those where the outcome is poor, is underway. J. Clin. Apheresis 18:1–9, 2003.
2003 Wiley-Liss, Inc.
3 Key words: peripheral blood progenitor cell collection; donor acceptability; siblings
issues in healthy donors were unknown. It was judged agreed to participate were given an explanatory letter
imperative that these donors should be fully informed and asked to sign a study consent form.
and consent to participate in an ethically approved
study. Consequently, their care was provided by in-
dependent staff who were not treating the recipient. In
our unit, it became practice for the potential donors Baseline Anxiety Measures
to be independently interviewed and examined in or- At the time of study recruitment, at the initial in-
der to assess their general health, and also to receive terview, participants were asked to complete both
detailed information about both methods of dona- state and trait anxiety scores of the original Speil-
tion. The donors then made the ultimate decision berger State Trait Anxiety Inventory (STAI) [13]. The
about which procedure they preferred for their do- STAI is a well-established and validated tool for
nations, providing they were medically fit. Any donor measuring anxiety. Normative population data is
with an underlying medical condition that required only available from North America (means -35 Trait
bone marrow harvesting rather than PBPC donation and 32 State). Its use in relation to allogeneic dona-
received medical follow-up but was excluded from tion of PBPC has not been documented. The only
comparative study. identified use of the STAI in PBPC donation involved
Standardised local guidelines were produced to patients using a French adaptation of the instrument
address the information that was given to donors. [12]. The original version of the STAI consists of two
By July 1996, our unit had dealt with 19 alloge- 20 statement self-report scales. One scale is designed
neic sibling donors and obvious differences between to measure state, and the other trait, anxiety [13].
the clinical needs of donors land recipients were State anxiety refers to the distress caused by a specific
identified. In particular, it was realised that some event, and trait anxiety refers to a personality ten-
sibling donors felt under considerable pressure to dency towards anxiety. For all statements, each par-
donate and in effect, they may have had no real ticipant marked one of four options that best related
choice. to how they felt. Each response was scored on a scale
The psychosocial aspects of PBPC donation in of 1–4 via a separate key. Scores for each of the scales,
siblings have not previously been documented al- therefore, range from 20 (lowest anxiety) to 80
though Auquier et al. [12] have explored pain and (highest anxiety).
anxiety associated with PBPC donation by patients.
Therefore, the purpose of this baseline study was to
indicate any clinical or support interventions that
would improve the care of sibling donors during the Procedural Assessments
period surrounding their PBPC donation. We aimed On the first day of stem cell donation, in addition
to assess the general acceptability of PBPC donation to routine care, the donors were asked again by a
to sibling donors, but particularly to record the pain member of staff to complete the State Anxiety Scale
and anxiety involved in donating. We also aimed to [13]. During the period of recuperation after the final
explore the circumstances surrounding the identifica- donation on the second day, donors were then inter-
tion, selection, and real choices available to sibling viewed by an independent researcher using a stan-
donors and to identify their information and support dardised proforma that contained both open and
needs. 6 closed questions (see Appendix B). These questions
related to the causes of anxiety and pain, the feeling
of closeness with the recipient sibling, experiences
of being a donor, and the information and support
MATERIALS AND METHODS needs of donors throughout all stages of the process.
The family dynamics were explored because it was
Donors and Recruitment postulated that feelings of closeness towards the
Over a 13-month period, from July 1996 to August recipient either during childhood or in adult life
1997, all HLA identical sibling donors were invited to might influence the enthusiasm to donate.
take part in this psychosocial study by a member of Perceived anxiety about the procedure was mea-
the apheresis unit staff at Glasgow Royal Infirmary. sured using a 4-point rating scale. This scale was se-
At this initial interview, using a standardised checklist lected at this time because it provided a context in
5 (see Appendix A), donors received routine health which to explore further the issues relating to anxiety.
screening and verbal information on both stem cell It also served as a quick secondary measure of anxiety
and bone marrow donation. Also at this interview, and, therefore, acted as a consistency check of the
donors were given an explanation of what would be STAI state anxiety score obtained immediately on the
involved in taking part in this study. Those who first day of donation. The perceived level of worst
Sibling Donor Views on Blood Stem Cell Donation 32
TABLE I. Characteristics of Donors
Characteristic Male (n = 9) Female (n = 8) All (n = 17)
pain was measured using a 100-mm horizontal visual by their mothers, one by another sibling, and in an-
analogue scale (VAS). These scales are a common and other case the donor offered to donate. In terms of
well-established measure of pain [14]. They have been family dynamics, 13 (77%) described themselves as
shown to be readily understood by users and have close or very close to their brother or sister now. The
been shown to be more sensitive than graphic rating other four described themselves as not close. Two had
scales. Horizontal scales have been shown to produce had arguments and the other two felt that living some
a more uniform distribution of scores than vertical distance apart had affected their relationship. Eleven
scales [15]. (65%) donors said that they and their siblings had
been close or very close as children. Generally
speaking, those who were close as children had
Analysis maintained that bond in adult life. Fourteen people
Data were analysed using SPSS. The small num- said they had no hesitation in offering to donate. This
bers involved and frequency distributions of re- included one donor who cited distance and the two
sponses indicated that analysis should be restricted to who had cited arguments as a reason for not feeling
descriptive statistics only. close to their siblings.
When asked what influences the wish to donate for
a sibling, 13 (77%) donors cited as the main influence
RESULTS the family bond no matter their current relationship
with the donor. Three people felt that if you could
Study Exclusions help someone you should, and one person cited fear
All of the 20 potential donors agreed to participate of his/her father as the main influence.
in this study. Three donors chose to donate bone A total of three donors felt pressurised about some
marrow and were, therefore, excluded from the study. aspect of donating. Two felt pressurised into donating
by family members. One, a younger donor, by fear of
his/her father, and the other, who described being
Personal Characteristics close to his/her sibling, by the pressing needs of the
recipient. One donor felt under pressure because his/
Nine donors were male and eight female. Both men her employers were uncooperative in allowing time off.
and women donors were commonly in their early
forties. Half described themselves as married and just
over three-quarters had children. Fewer than half had
had a surgical admission to hospital (Table I). Social Support for Donors
Ten donors (69%) felt they had been particularly
supported by one person. Six (35%) others said they
Family Characteristics of Donation had been particularly supported by a combination of
Three donors donated for an elder brother, eight people and one person felt that he/she had had no
for an elder sister, three for a younger brother, and support from family or friends. In three cases (all
three for a younger sister. The age gap between do- women), a friend was judged as being particularly
nors and recipients ranged from 1 to 11 years (Table supportive; three men had been particularly supported
I). Circumstances surrounding the request to donate by their wives; two women had cited their mother as a
were recalled by 16 donors. In six (35%) cases, con- particular source of support, and another two men,
trary to guidelines, the donor was asked to donate by their female partners. Encouragement and under-
the unit treating their sibling. Six (35%) other donors standing were cited as the main qualities of particular
were asked directly by their sibling. Two were asked support. Practical help, such as looking after children
4 Williams et al.
and accompanying the donor to the unit, was another TABLE II. Relationship Between Pain and Anxiety
type of particular support thought useful. Pain scores (mm)
Six (35%) donors said that someone had not been
Anxiety 0–25 26–50 51–75 76–100 Overall
supportive. In two cases, this was a husband, another
two cases a father, and for the other two, friends or Not anxious 3 3 1 1 8
relatives. In four (66%) of these cases, including one Slightly 1 2 1 4
anxious
concerning a father, the donor thought the reason for Quite anxious 1 1
lack of support was because the person felt concern or Very anxious 1 3 4
worry for the recipient. Another donor cited a diffi- Total 5 6 5 1 17
cult relationship with their father as the reason he/she
did not feel supported. The other donor cited a
friend’s fear of hospitals as the reason he/she was not
supportive. during administration of the local anaesthetic for
venepuncture at the time of donation. Two donors
had experienced most pain in their head but said this
was not a classic headache, and two had found the
Anxiety Surrounding the Procedure sub-cutaneous injections of GCSF were most painful.
At pre-procedure interview, the mean STAI score Seven patients took no analgesia to control their pain.
for trait anxiety was 35 (SD 7) and the mean state Paracetamol was used by 8 (47%) people; however,
score was 30 (SD 8). The mean state anxiety score, half felt that their efforts to reduce pain had not
measured upon arrival at the unit on the first day of worked and that it had to be endured. One person,
donation, was 37 (SD 12). Mean scores for female who admitted to having a low pain threshold and who
donors were higher than for males across all three was very anxious, took DF118 and was prescribed
measures of anxiety (trait 39 vs. 33, state at recruit- valium. This combination was effective in reducing
ment 33 vs. 29, state pre-donation 47 vs. 32). pain and controlling anxiety.
These scores were consistent with responses to In this small sample, there was no clear-cut asso-
questions about anxiety asked at the post-donation ciation between pain and anxiety. Six (75%) people
interview. Four (24%) people who retrospectively who, at the post-procedure interview, described
described themselves as being very anxious when they themselves as not anxious at the start of the proce-
had first arrived at the unit to donate had scored more dure scored 50 mm or less on the pain scale. The
than 40 on the STAI state scale. The main sources one person who scored 76 mm or more also de-
of anxiety were about fear of the unknown concern- scribed themselves as not anxious (Table II). Con-
ing the procedure and about the pain associated with versely, the four people who said they were very
the injections of local anaesthetic. Anxiety was gen- anxious rated themselves as experiencing medium
erally reduced on the second day of the procedure. amounts of pain and scored 26–75 mm on the
Eleven (65%) said they were not anxious on the sec- pain scale.
ond day and no one said they felt very anxious at
this time.
Allowing for small numbers, pressure to donate did Information
not appear to influence anxiety before procedure. One All donors valued the quality of the informa-
person who felt under pressure to donate said they tion they had received and 9 (53%) described it as
felt slightly anxious as did four (29%) people who said excellent. Thirteen (77%) donors had received both
they did not feel under any pressure. The other two written and verbal information, although the written
donors who felt under pressure said they were not information was designed for autologous donors. The
anxious. remaining four donors said they had received verbal
information only.
All donors reported that they had received this
Pain information at the initial interview to discuss dona-
Using the continuous analogue scale, the mean tion. In 14 (82%) cases, a consultant was cited as
worst pain score was 41 mm (SD 20). Female donors the source of information, two donors said they
had a higher mean pain score (47 mm, SD 18) than received information from a combination of consul-
males (34 mm, SD 20). tant and nurse, and one had been well informed by
Sixteen (94%) reported some pain. Generalised their recipient sibling and the consultant. Sixteen
bone pain following GCSF injections was the most (94%) stated they had been given comprehensive
common cause of worst pain, experienced by 7 (41%) information about procedures, risks, and pain.
people, and 5 (29%) people experienced most pain The other, a male who scored 60 mm on the VAS,
Sibling Donor Views on Blood Stem Cell Donation 52
TABLE III. Relationship Between Anxiety and Satisfaction stantaneous decisions to help and once their minds
With Information Giving were made up, they wished to proceed as quickly as
Need for more information possible in order to help their siblings.
Anxiety Yes No Overall
Not anxious 4 4 8
Slightly anxious 4 4 Repeating the Experience
Quite anxious 1 1 All said they would donate again for a family
Very anxious 1 3 4 member and 12 (71%) said they would also donate for
Total 5 12 17 a stranger if the opportunity arose. Generally, the
donors reflected on earlier opinions that life is im-
felt that information had concentrated on possible portant and if you could help someone then you
pain. All donors had found seeing the machine very should.
helpful.
Eleven (65%) donors said they had all the infor-
mation they wanted. Two, both of whom scored Comments
higher than 50 mm on the VAS, would have liked Ten (59%) people spontaneously stated that they
more information about pain. Two would have liked were well satisfied by the standard of their care. One
more information about the benefits of stem cell do- of these donors, upon reflection, had found it difficult
nation. One would have liked more information to remain in one place for 3 hours at a time and
about the effectiveness of the different procedures for wished he/she had chosen to donate bone marrow.
the recipient and the other would have liked more Only one donor expressed fear that the donation
information on the long-term effects of stem cell might not work and that their sibling might die. Seven
donation. people had no further comments.
Six (35%) people were happy with just verbal in-
formation but specific written information for allo-
geneic donors was judged to be important by the
DISCUSSION
other 11 (65%). Two people said that written infor-
mation needed to be comprehensive and the long- Over the past 5 years, the use of allogeneic sibling
term effects of growth factor injections should be donor peripheral blood stem cells has grown expo-
addressed. They would have liked more detailed in- nentially [1–3]. No published literature exists on
formation about what is involved in donation of both the donors’ perception of this form of donation.
stem cells and bone marrow. Information on self-care Although this prospective baseline study was limited by
was perceived as important, especially how donors small numbers, it does represent the psychosocial
could prepare themselves, e.g., diet, rest, and so on context of PBPC donation for a complete sample
and how they should look after themselves following of consecutive sibling donors over a 13-month period.
the procedure. The main advantage of written infor- The overall attitude to the procedure was favour-
mation was that it could be taken away and studied at able. The fact that most donors experienced some
home but it was viewed as an adjunct, not a re- bone pain yet did not take analgesia nor request
placement, to verbal information. further analgesia may reflect their belief that some
There was no obvious relationship between anxiety pain was required for stem cell generation. Moreover,
and satisfaction with information given (Table III). the pain was not severe enough to stop any of the
Of the 8 people who, at the post-procedure interview, mobilisations. Anxiety levels were comparable with
described themselves as not feeling anxious before the the North American norms for men and women aged
procedure, 4 (50%) felt they needed more information 19–69 years [13] and also similar to the data collected
and 4 (50%) thought they had all the information they by Auquier [12] on PBPC collection from patients. It
needed. Of the 4 who described themselves as very is conceivable that the low anxiety levels found in the
anxious, 3 (75%) felt that they had all the information French patients may be due to the considerable stress
they required. previously caused by their diagnosis and therapies,
making PBPC a relatively minor procedure in terms
of anxiety [12].
Time for Consideration Although verbal information given at the time
All donors thought that they had been given en- of the initial interview was universally valued, our
ough time to consider whether or not to donate, and study found that the written information was in-
this varied from two weeks to several months. Gen- adequate for donor needs. It was originally pro-
erally, the donors indicated that they had made in- duced for patients and did not cover such issues as
6 Williams et al.
Thank you for your time. How do you feel now? Is there anything you would like to add?