Nephrol Dial Transplant (2005) 20: 1670–1675
doi:10.1093/ndt/gfh717
Advance Access publication 14 June 2005
Original Article
Partners’ concerns, needs and expectations in ESRD: results of
the CODIT Study
Emmanuel Morelon1, François Berthoux2, Catherine Brun-Strang3, Suzanne Fior4 and Régis Volle5
1
Hôpital Edouard Herriot, Lyon, 2CHU, St Etienne, 3Novartis-Pharma, Rueil-Malmaison, 4Université René Descartes,
Paris and 5FNAIR, Toulouse, France
Abstract
Background. The incidence of chronic kidney failure,
like that of many chronic diseases, is on the increase
with most patients today being treated at home.
Methods. The CODIT Study, based on a self-report
questionnaire returned by 1815 respondents, set out
to assess the impact of this disease and its treatment
on the lives of patients’ partners.
Results. Transplantation significantly lightens the
load on this population, with two in three partners
of patients still on dialysis judging the overall impact
on their own daily life as major, compared with only
one in four of the partners of transplanted patients.
Partners of patients on dialysis devote more time to the
patient, are more likely to experience negative prac-
tical, relational, social, psychological and professional
consequences and they judge their own quality of
life as significantly lower than do the partners of
transplanted patients. Nevertheless, this is not to
say that a significant fraction of the latter group does
not experience profound compromise in many areas
of life.
Conclusions. This study has identified clear differences
in outlook and attitudes between dialysis and trans-
planted patient’s partners. Quality of life of spouses of
transplanted patients was significantly better. Indeed
transplantation appears often like an outcome. On the
contrary, needs in both groups were more material
than psychological. Having highlighted needs and
concerns of the spouses, it might be possible to fulfil
them in order to optimize patient management.
Keywords: dialysis; health outcomes; psychosocial
needs; quality of life; renal transplantation
Correspondence and offprint requests to: Catherine Brun-Strang, 2-4
rue Lionel Terray, BP 308, F-92506 Rueil Malmaison Cedex,
France. Email: catherine.brun@pharma.novartis.com
ß The Author [2005]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
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Introduction
End-stage renal disease (ESRD), although no longer
swiftly fatal these days, is one of a whole series of
increasingly prevalent chronic diseases requiring long-
term care. In this context, it has become evident over
recent years that a whole variety of psychosocial factors
may influence outcome [1], although specific factors
may vary from disease to disease [2,3]. One key set of
psychosocial factors are those related to the patient’s
family [4], notably the primary care-giver (usually the
spouse).
Above and beyond the practical contributions
made in the areas of compliance and diagnosis by the
patient’s partner, this individual is a key member of
the care-providing team who is expected to be an ever-
present source of psychological as well as material
support [5]. Of course, family solidarity in the face of
disease is by no means a new idea, but its importance
has been somewhat eclipsed in recent years in favour
of more-readily evaluated outcome determinants.
It is now time to re-evaluate, on as scientific a basis
as possible, the family’s role and the effect of family-
related issues on outcome in chronic disease, a novel
approach referred to as ‘proximology’ [www//
proximologie.com].
The purpose of the CODIT Study, the results of
which are reported here, was to extend the proximology
approach to ESRD, specifically to use a self-report
survey to assess and compare the situation of different
populations of partners of patients either on dialysis
or carrying a transplanted kidney, with a view to
defining disparate and common needs.
Subjects and methods
In an initial phase, the questionnaire was compiled by an
expert group working in collaboration with 16 partners of
patients with ESRD (who were not actively involved in any
patient support group). On the basis of this group’s concerns,
Results of the CODIT Study
questions were formulated with a view to generating an
accurate reflection of respondents’ real experiences and needs.
The resultant questionnaire consisted of 42 basic questions,
each containing between one and 19 alternatives or options.
The items were broken down into the following five broad
categories: (i) details of the patient’s disease and treatment;
(ii) partners’ assessments of the patient’s state of health and
its impact on the patient’s own professional and social life;
(iii) the extent of the partner’s involvement with the patient
(including items related to both general and disease-specific
parameters); (iv) the impact of the patient’s disease on the
partner’s life—this, the core section of the questionnaire,
covered practical, relational, psychological, occupational and
economic issues; (v) partners’ needs and expectations. This
questionnaire was distributed throughout France via clinical
establishments (hospitals, nephrology units and dialysis
centres) and with the help of the network of regional offices
of FNAIR (the main French patient support group for those
suffering from chronic kidney failure).
The statistical analysis was based on Fisher’s exact test
with the confidence limit set at P ¼ 0.01.
Results
Populations
Out of a total of about 5000 questionnaires sent out,
1815 were returned and analysed. Demographic char-
acteristics of the partner populations are detailed in
Table 1. The dialysis group was broken down into those
awaiting transplantation (the pre-transplant subgroup)
and those not scheduled for the operation (the non-
transplant subgroup). As the latter group was signifi-
cantly older than the other two, the proportion of
partners still in work in this group was lower (only 13%
compared with 44% in the pre-transplant subgroup
and 36% in the transplanted group). Therefore, for the
purposes of comparison, a sub-subgroup was isolated
(the ‘young’ non-transplant dialysis subpopulation)
to be comparable in age to the transplanted group.
Pertinently, even in this selected sub-subgroup, the
proportion of partners in work was still significantly
Table 1. Demographic characteristics of partner populations
Partner population n Gender of Mean age Relationship
partner, of partner of <3 years
M/F (%) standing (%)
Transplanted group 827 30/66a 53.0b 2.2
Dialysis group 988 28/66a 60.8 6.9
Pre-transplant 267 32/63a 50.0b 7.8
dialysis subgroup
Non-transplant 721 26/67a 64.5 6.6
dialysis subgroup
‘Young’ non-transplant 220 51.2b
dialysis sub-subgroup
a
Figures do not necessarily add up to 100%, because not all
respondents answered certain questions.
b
Significant difference vis-à-vis the non-transplant dialysis subgroup
(P<0.01).
M, male; F, female.
1671
lower (only 15%). The great majority of the couples
had been together for
3 years and socio-economic
status was relatively high in both transplanted and
dialysis groups (data not shown).The age of the patients
was very close to that of the partners in all groups.
Nearly all the dialysis patients were having three
sessions of haemodialysis a week at either a centre or
a hospital. One in five was carrying a non-functioning
transplanted organ and 27% were awaiting transplan-
tation. Age and intercurrent health problems were the
main contraindications to transplantation.
In >80% of the patients in the transplanted group,
the kidney had been transplanted within the previous
12 years and almost all had been on dialysis up until
the operation (for <3 years in most cases). Only 2%
were carrying kidneys from live donors.
Partner’s assessment of the patient’s condition
Partners were asked to make an assessment (on a scale
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of 0–10) of three parameters indicative of the patient’s
overall status, namely his/her general state of health,
psychological well-being and degree of independence.
In all cases, the partners of transplanted patients
attributed significantly higher scores (P<0.01) than
did the partners of patients on dialysis (Figure 1).
Scores in the transplanted group were still significantly
higher (P<0.01) on all three counts when compared
with those attributed by the pre-transplant and
‘young’ subpopulations of the dialysis group. In fact,
the partners of transplanted patients were generally
extremely positive about their spouse’s status, with
mode scores of 8 attributed for both health and
psychological well-being and one of 10 for indepen-
dence. A significantly higher proportion (P<0.01) of
dialysis partners reported a negative impact on the
patient’s professional life, leisure activities and social
life (Figure 2).
Extent of the partner’s involvement
Whereas 87% of dialysis partners considered them-
selves as indispensable, 39% of the partners of
transplanted patients did not. No gender-dependent
differences were observed in partners’ assessments of
their roles, although women devoted more time as a
result of their spouse’s condition. Interestingly, there
9
8
7 P value vs
6 transplant
Mean score
transplant
5
pre-transplanted <0,01
4 dialysis < 0,01
3 young dialysis < 0,01
2
1
0
State of health Psychological Independence
well-being
Fig. 1. Partners’ assessments of the patient’s condition.
1672 E. Morelon et al.
70
Table 2. Impact on the partner’s own daily life: practical
percentage reporting negative impact

60 consequences (notably reduced holidays and/or leisure activities,

dietary restrictions)
50 P value vs
transplant T ransplant
40 Significant Relatively Not specified
pre-transplanted < 0,01 insignificant
30
"young" dialysis
< 0,01
20 Dialysis group 67a 29a 4
10 Transplanted 24 44a 32
group
0
professional leisure social Values are the percentage of respondents.
a
Significant difference (P<0.01) between dialysis vis-à-vis
Fig. 2. Proportion of partners reporting their partner’s disease as transplanted groups.
having a negative impact on their own life.

Table 3. Impact on the partner’s own daily life: relational

consequences (relations within the couple)
was little correlation between the partners’ assessments
of the importance of their own role and their assess-
Improvement Deterioration No Not
ments of the patient’s condition. change specified
Most partners in both groups rely on the media for
information about kidney disease and transplantation

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Dialysis group 10 20 47 24
and <20% attend meetings or actively participate in Transplanted 15 12 47 26
any patient support group. group

Values are the percentage of respondents.

Impact of the patient’s disease on the partner’s life

Refer to Tables 2–6 for a summary of the data on the Table 4. Impact on the partner’s own daily life: psychological
partners’ assessments of the impact of their spouse’s consequences (current outlook on life)
disease on their own life.
Striking differences emerged between the partners Good Acceptable Mediocre Poor
of patients still on dialysis and the partners of trans-
planted patients with respect to practical consequences. Dialysis group 28a 44 20a 8a
Transplanted group 49 37 8 4a
Whereas only 2% of the former said that the disease
had entailed ‘no change’ in the circumstances of their Values are the percentage of respondents.
own daily life, fully 32% of the latter did so. Similarly, a
Significant difference (P<0.01) between dialysis vis-à-vis
more than twice as many partners of dialysis transplanted groups.
patients reported practical restrictions (81% vs 38%).
Moreover, if only those respondents who provided
a reply are considered (given that fully one-third of Table 5. Impact on the partner’s own daily life: social consequences
the transplanted group failed to do so because they (contact with extended family and friendsa)
had already said that this is not an issue), whereas
>70% of the dialysis partners assessed practical Difficult Not a major No Not
problem change specified
restrictions as significant, >65% of the partners of
transplanted patients downplayed them. Nevertheless,
Dialysis group 30 22 40 11
it should be pointed out that the fairly high Transplanted group 14 18 57 11
proportion of one in four partners of transplanted
patients reported experiencing significant practical Values are the percentage of respondents.
a
restrictions and nearly one in three were obliged to Assessed by those who mentioned reduced contact with family
curtail their vacations and/or leisure activities to some and friends: the results add up to >100%, because some of those
who reported no change also responded to the question about the
extent. problems posed by such a change.
In terms of the conjugal relationship, nearly half of
those in both groups who responded to the question
(>25% of respondents in both groups did not) said that An adverse effect on sexual relations was reported by
there had been no change, although when a change was most of the three-quarters of partners who responded
reported, a higher percentage in the dialysis group to the question, with >80% of the dialysis group
reported deterioration than reported improvement reporting curtailment or cessation, compared with 55%
(20% vs 10%), a trend which was reversed in the trans- in the transplanted group. In terms of relationships
planted group (12% vs 15%). Nevertheless, almost with the wider family (children, brothers, sisters,
one-third of the respondents in both groups reported parents, cousins, etc.) and friends, about two-thirds
that the couple had been ‘brought together’ by the in each group reported no change. Although overall
experience. deterioration was more common than overall
Results of the CODIT Study
Table 6. Impact on the partner’s own daily life: economic
consequences
Significant Relatively
insignificant
Dialysis group 48a 24
Pre-transplant subgroup 44a 24
Non-transplant subgroup 31 26
Transplanted group 36 23
Values are the percentage of respondents.
a
Significant difference (P<0.01) between dialysis
transplanted groups.
improvement among those who had seen a change,
positive reactions (increased presence and active sup-
port) were cited more often than negative ones (lack
of understanding and denial). Twice as many dialysis
partners (35%) mentioned seriously reduced availabil-
ity for friends and family and, logically, this was more
widely perceived as a serious problem in this group than
in the transplanted group (30% vs 14%).
When asked to assess their outlook on the future,
86% of the partners of transplanted patients were
optimistic whereas the corresponding proportion
amongst dialysis partners was only 65% (not a
significant difference); the others tended to be pessi-
mistic. A total of 14% of partners in the dialysis group
complained of depression as opposed to just 8% in the
transplanted group (P<0.01).
Nearly two-thirds of all the partners reported
that their spouse’s state of health had had no effect
on their own professional life and there were no
significant differences in this respect between the
groups. Among the one-third that had experienced
such consequences, the specific areas most commonly
mentioned involved organization of their working
hours, taking early retirement and switching to part-
time work.
Significant economic consequences had been experi-
enced by a similar proportion in both groups (35%),
but in nearly six in 10 households, overall, economic
consequences were assessed as no greater than ‘small’
(and one-third of all respondents selected ‘none’).
Within the dialysis group, the generally younger
subgroup of patients awaiting transplantation had
experienced significantly greater financial loss than
the others. When economic consequences were
described as significant, the reasons were loss of
revenue due to either the partner and/or the patient
having to stop work, difficulty in obtaining loans
and extra vacation expenses; other financial problems
(including difficulty in negotiating complementary
insurance, general travel expenses and having to buy
special domestic equipment) were not mentioned by
many respondents.
Concerns, perceived needs and expectations
Each group had certain specific concerns. The major
fear of partners of transplanted patients was about the
1673
lifetime of the transplanted organ. This was also
mentioned by more than half of the partners of dialysis
patients awaiting transplantation, but, as might be
No effect
expected, their major concern was how long it would
take for a suitable organ to become available. The
specific worries of all partners of patients currently on
28a
29 dialysis were the adverse effects of dialysis (e.g. arterial
35 damage) and the possibility that the fistula might
38 stop working. Other concerns were common to both
groups of partners, including drug side effects (37%
vis-à-vis
in the dialysis group and 63% in the transplanted
group), uncertainty about how their spouse’s disease
will progress (51% and 23%, respectively) and the
fear that they themselves might either fall ill (54%
and 25%, respectively) or no longer be able to
cope with the psychological stress (21% and 31%,
respectively).
When asked about their needs, more partners in the
transplanted group than in the dialysis group described
themselves as having no need or expectation at all
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(29% vs 10%). Again, the needs expressed differed from
group to group. Half of all dialysis partners wished for
enhanced access to dialysis centres when away from
home (notably on vacation) and 28% identified home
help as a need. Very few (3%) expressed any interest
in the possibility of home dialysis. Partners of those
awaiting transplantation specifically sought financial
aid (27%) and practical advice (25%). Needs expressed
by a significant proportion of partners in both groups
included psychological counselling and better informa-
tion about the disease and treatment modalities. The
partners assessed the information currently available
about dialysis and drugs as very mediocre (respective
mean scores were 6.4 and 5.3 on a scale of 10); the
transplanted group felt somewhat better informed
about transplantation than those awaiting transplanta-
tion, but a need was obviously felt across the board for
better information. In this respect, fully 40% in both
groups felt that healthcare professionals (physicians
and nurses) did not take any notice of partners’
questions.
Overall quality of life
When asked to assess the quality of their current
life on a scale of 0–10 (Figure 3), the scores given
by partners of transplanted patients were significantly
higher than those given by partners of patients on
dialysis.
Discussion
The significantly higher overall quality of life assess-
ment given by partners of transplanted patients
accurately reflects the global findings of the CODIT
Study, in that, in almost all respects, this group is
significantly more positive than the partners of patients
on dialysis: they judge their spouses as being in better
overall condition and happier; they judge that their
1674
8
7
6 the resultant therapeutic, psychological, social and
quality of life
5 "young" dialysis
4
pre-transplant
3 COMPAS Study [8], which focused on the partners of
transplanted
2
1
0 seems to be particularly hard hit, with 42% seeking
t
s
d
an
si
te
ly
an
pl
ia
ns
pl
"d
tra
ns
ng
tra
e-
ou
pr
"y
Fig. 3. Partners’ assessments of their own quality of life.
patients are less dependent on them and the disease
has less negative impact on the partner’s own life in a
variety of different areas (notably practical, relational,
psychological and financial aspects); and, lastly, they
express fewer needs and expectations.
An important issue which needs to be taken into
account when interpreting the results and coming to
conclusions about causal relationships, especially those
pertaining to consequences on professional life and
the general impact of the disease, is the significant
differences between the groups vis-à-vis the proportion
of partners who are still working. This differential
is partly accounted for by age differences between the
groups, but not entirely, e.g. the higher proportion in
the transplanted group still in work compared with that
in the age-matched ‘young’ non-transplant dialysis sub-
subgroup probably reflects the fact that the general
state of health of dialysis patients not eligible for trans-
plantation is worse (with ‘intercurrent health problems’
cited as the major contraindication to transplantation).
Another important factor to bear in mind when
psychologically conditioned, subjective parameters are
being compared is that transplantation represents, to
some extent, an endpoint, the culmination of a long,
difficult story, so that these partners (the transplanted
group) may feel that the worst is over, that not much
more can be done and that things may now get better.
This may be particularly relevant when comparisons
are made with partners of patients awaiting transplan-
tation (the pre-transplant dialysis subgroup) who are
going through a period which is well characterized as
being particularly stressful and difficult [6].
In any case, despite the major improvement in the
family situation brought about by transplantation,
everything is far from perfect, with fully one-quarter
of the partners of transplanted patients assessing the
everyday restrictions imposed on their own life as a result
of their spouse’s condition as ‘major’ or ‘moderate’
and over one in three experiencing significant financial
consequences.
In the context of a general evolution towards more
holistic patient care, two other recent studies have
focused on primary care-givers. The PIXEL Study [7]
analysed those caring for demented patients, with the
goal of identifying ways of helping them fulfil their
demanding job so that institutionalization of the
E. Morelon et al.
patient can be deferred as long as possible (with all
p value vs financial benefits). Some of the same concerns and
transplanted
needs identified in this population emerged from the
< 0,01
patients with Parkinson’s disease, a population that
< 0,01
psychiatric counselling and nearly one-third taking
some form of psychiatric medication.
In all three of these studies, which set out to define
the needs and concerns of primary care-givers, certain
pathology- or population-specific issues emerged (like
the differences in outlook, attitude and needs between
partners of patients on dialysis and those of trans-
planted patients). However, perhaps more interestingly,
taken together the findings also point to other concerns
and requirements that are commonly expressed by
people taking care of any patient with a chronic disease.
Defining such more or less common concerns will
make it possible to design more or less universal tools
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to predict outcome and improve care, e.g. a specially
designed, relevant Quality of Life Scale. Among
the common needs expressed by the partners of
patients with dementia, Parkinson’s disease and ESRD,
some are relatively easily addressed, notably: better
information on the disease and the various different
treatment modalities; financial aid; material support
with patient care (e.g. specialized day-care centres
or home help); and easier access to psychological
counselling.
The corollary to any impact such family-related
factors may have on the patient’s health is the effect
that caring for a chronically ill person, a time-
consuming and emotionally draining experience, has
on the family. Findings such as those reported here
could provide valuable information on this potentially
serious public health problem and might point to
ways to improve the lot of these people who are
performing such a socially important role. This could
only lead to more holistic patient management
and improved outcomes and might help forestall an
epidemic of illness induced by the sometimes terrible
stress of having to care for a chronically sick relative.
Acknowledgements. We are grateful to Dr Anthony Molloy for
help in the writing of this article. This study was sponsored by
Novartis-Pharma SAS.
Conflict of interest statement. None declared.
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