ORIGINAL ARTICLE
Management of related donor care: a European survey
S Clare
1
, A Mank
2
, R Stone
3
, M Davies
4
, C Potting
5
and JF Apperley
6
, on behalf of the Research
Sub-committee of the EBMT Nurses Group
1
Department of Clinical Haematology, Haematology Nursing Research and Practice Development, University College Hospital,
University College London Hospitals NHS Foundation Trust, London, UK;
2
Department of Clinical Haematology, Academic Medical
Centre, Amsterdam, The Netherlands;
3
Centre for Clinical Haematology, Nottingham University Hospitals NHS Trust, Nottingham, UK;
4
Haematology and Transplant Unit, Christie Hospital, Manchester, UK;
5
Haematology Department Radboud University, Nijmegen
Medical Centre, Nijmegen, The Netherlands and
6
Department of Haematology, Imperial College, Hammersmith Hospital, London, UK
Donating BM or peripheral stem cells is a challenging
process that requires a considerable commitment on the
part of the donating individual, especially when there is a
relationship between donor and recipient. In order to
develop a better understanding of related donor manage-
ment, the research subcommittee of the European Group
for Blood and Marrow Transplantation-Nurses Group
(EBMT-NG) designed a questionnaire to survey European
transplant centres. This questionnaire investigated several
key areas, including guidelines, patient information, donor
consent and follow-up services. It was distributed to a
sample of delegates (N¼ 150) at the 2005 meeting of the
EBMT-NG. Guidelines for the information given to
patients were primarily from local (33, 52%), and a
combination of local and national (13, 21%) sources.
Transplant information was predominantly given to
related donors by the recipient’s transplant team (36,
57%). A total of 33 (52%) centres indicated that donors
were also consented by transplant doctors, whereas 16
(25%) identified that consent was obtained by doctors who
were not connected with the transplant team. At present,
there is a lack of recognized standardized guidelines for
the management of related donors. The development of
such guidelines would assist in maintaining patient
autonomy, confidentiality and access to accurate and
objective information.
Bone Marrow Transplantation (2010) 45, 97–101;
doi:10.1038/bmt.2009.117; published online 8 June 2009
Keywords: related donor; donor management; guidelines;
patient information; informed consent
Introduction
An important factor that distinguishes related donors from
unrelated donors is the relationship between donor and
recipient. The principal differences are the maintenance
of unrelated donor anonymity and the avoidance of a
relationship between donor and recipient during the acute
phase of treatment. In 2006, the outcomes of 9661
allogeneic stem cell transplants performed throughout
Europe were reported to the European Group for Blood
and Marrow Transplantation (EBMT); of these, 4838
(50%) were from HLA-identical siblings and 539 (5.5%)
were from other family members.
1
Unrelated donors benefit
from standardized care guidelines and clinical pathways
established by national and international donor registries
and associated organizations.
2,3
This is not the case for
related donors, for whom structured processes are currently
limited. Where guidelines do exist, they are general
donation guidelines and focus on the requirements of
centres to provide a basic level of information regarding the
physical processes of donation,
4
or refer to the standards of
practice for unrelated donors.
5
Another significant issue
is the fact that, in contrast to unrelated donors, related
donors do not have the support or advice of an
independent donor advocate.
Donating BM or peripheral stem cells is a challenging
process that requires a considerable commitment on the
part of the donating individual.
The inconvenience and discomfort associated with stem
cell donation are subjectively limited in the donors’
experience, suggesting that the concepts of ‘gift’ of
donation and familial ‘solidarity’ partly compensate for
pain and psychological stress.
6
Responses to the donor
experience are consistent with the ‘heightened intimacy’
between recipient and donor.
7
These more intimate,
familial relationships are increasingly recognized as im-
portant in the physical as well as psychological welfare of
related donors.
The relationship between donor and recipient is notably
different for related donors, given that they already have a
relationship with the associated family and carers.
Although the need for anonymity and confidentiality may
be acknowledged by healthcare providers, in practice this
Received 19 March 2008; revised 17 November 2008; accepted 21
January 2009; published online 8 June 2009
Correspondence: S Clare, Haematology Nursing Research & Practice
Development, University College London Hospitals NHS Trust, 250
Euston Road, 1st Floor Central, London NW1 2PG, UK.
E-mail: simon.clare@uclh.nhs.uk
Bone Marrow Transplantation (2010) 45, 97–101
& 2010 Macmillan Publishers Limited All rights reserved 0268-3369/10 $32.00
www.nature.com/bmt

may not always be realized. Williams et al.,
8
commenting
on sibling donors, concluded that there was a lack of
confidentiality regarding donation, and that this compro-
mised the traditionally volunteer status of the donor.
A study from the Marseille transplant group identified
several important psychosocial factors associated with stem
cell donation from within a family. Despite the relatively
high levels of pain associated with donation, none of the
donors in the study asked for treatment to be stopped.
Moreover, at the end of the process, 85% (n¼ 22) of the
donors rated the procedures as either ‘very easy’ or ‘quite
easy’. All of the donors associated the act of donation with
‘saving somebody’s life’, and, perhaps more importantly,
donors reported a sense of ‘duty’ underpinning their action
to donate.
9
This sense of moral obligation is most likely
stronger within family units and could explain differences
in the attitudes between unrelated and related donors.
The aim of this project was to establish an understanding
of related donor care and management across EBMT
member facilities. We wished to determine clinical practice
with respect to the availability and use of guidelines and
patient information, the arrangements for follow-up, and
awareness of the concerns of related recipients and their
donors.
Materials and methods
Utilising a target population of nurses closely involved with
the transplant process, the research group designed a three-
part quantitative and qualitative self-administered ques-
tionnaire, consisting of 26 open, closed and multiple-choice
questions. Areas of investigation included availability and
use of guidelines and patient information, their content and
dissemination, related donor consent processes, related
donor concerns and follow-up services. The research
subcommittee distributed the questionnaire to a consecu-
tive sample of delegates at the Twenty-first Annual Meeting
of the European Group for Blood and Marrow Transplan-
tation-Nurses Group (EBMT-NG), Prague, Czech Repub-
lic, 2005. The completed questionnaires were analyzed for
centre repetition, with the intention of closely matching
respondents to our target population. When deciding who
should represent a particular centre in the event of multiple
respondents, we used a stratified analysis using a hierarch-
ical bias. This focused on the level of individuals’
involvement with related donor care, together with the
number of years of experience in the transplantation
setting. As a result, 13 (17%) respondents were removed
from the data (n¼ 63).
Results
A total of 150 questionnaires were distributed, with 76
(51%) completed tools being collected. The questionnaires
(n¼ 63) were disseminated across a broad cross section of
nations. The largest number of respondents came from
countries within the European Union (54), with the UK
completing 22 (34%) questionnaires, followed by The
Netherlands with 6 (9%) respondents, and Sweden,
Germany and Italy with 5 (8%) each.
Role
Respondents reported a variety of job titles: 14 (22%)
described their position as BMT coordinators, 11 (18%) as
clinical nurse specialists or advanced practice nurses in
either BMT or apheresis, 7 (11%) as senior nurses or nurse
managers. A total of 18 (29%) respondents, the biggest
single grouping, identified themselves ‘simply’ as ‘haema-
tology nurse’ or ‘just’ ‘nurse’. The lack of any definitive
description of these nurses’ duties limits our understanding
of their degree of involvement with donor care at a level
relevant to this survey; however, with over a third (25,
40%) of nurses identifying themselves as either BMT
coordinators or clinical nurse specialists, we feel, we have a
good response rate from clinical team members directly
involved in the transplant process.
Information
The majority of information for related donors came from
the respondent’s own centre (33, 52%) alone and 5 (8%)
centres used national sources alone, whereas 13 (21%)
centres used a combination of national and local sources,
and 10 (16%) centres cited international sources either
alone or in combination with local and/or national guide-
lines This information is given to related donors predomi-
nantly by the recipient’s transplant team: by a transplant
physician at 25 (40%) centres, by nurses at 11 (18%)
centres and by a combination of the two at 12 (19%)
centres. In contrast, 10 (16%) respondents indicated that
related donors received information from healthcare
professionals who were not connected with the transplant
team.
In 33 (52%) centres related donors are ‘consented’ by the
transplant doctors, whereas in 16 (25%) centres consent for
stem cell donation is taken by doctors who are not
connected with the transplant team (Table 1).
When considering how information was given to related
donors, 23 (36%) centres gave information to donors by
a combination of written and verbal methods; 19 (30%)
centres also included telephone conversations; and 17
(27%) centres reported using only verbal methods.
Table 1 Related donor informed consent (N¼ 63)
Intervention/Action Number Percentage
(%)
Transplant doctor 33 52
Doctor not involved in recipient care 16 25
Transplant team nurse/other 2 3
No response 2 3
Doctor+nurse not involved in recipient care 2 3
Doctor+nurse from the transplant team 6 10
Transplant doctor+nurse not involved in
recipient care
12
Doctor not involved in recipient care+
transplant nurse
12
Management of related donor care: a European survey
S Clare et al
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Bone Marrow Transplantation