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, 2 CHU, St Etienne, 3 Novartis-Pharma, Rueil-Malmaison, 4 Université René Descartes, Paris and 5 FNAIR, Toulouse, France
Correspondence and offprint requests to: Catherine Brun-Strang, 2-4 rue Lionel Terray, BP 308, F-92506 Rueil Malmaison Cedex, France. Email: catherine.brun{at}pharma.novartis.com
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Abstract
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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 practical, 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 transplanted 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
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Introduction
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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.
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Subjects and methods
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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, 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 lifethis, 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 = 0.01.
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Results
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Populations
Out of a total of about 5000 questionnaires sent out, 1815 were returned and analysed. Demographic characteristics 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 significantly 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 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 transplantation. 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 of 010) 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 independence. 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).

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Fig. 2. Proportion of partners reporting their partner's disease as having a negative impact on their own life.
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Extent of the partner's involvement
Whereas 87% of dialysis partners considered themselves 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 was little correlation between the partners assessments of the importance of their own role and their assessments of the patient's condition.
Most partners in both groups rely on the media for information about kidney disease and transplantation and <20% attend meetings or actively participate in any patient support group.
Impact of the patient's disease on the partner's life
Refer to Tables 26


for a summary of the data on the partners assessments of the impact of their spouse's disease on their own life.
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Table 2. Impact on the partner's own daily life: practical consequences (notably reduced holidays and/or leisure activities, dietary restrictions)
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Striking differences emerged between the partners of patients still on dialysis and the partners of transplanted patients with respect to practical consequences. Whereas only 2% of the former said that the disease had entailed no change in the circumstances of their own daily life, fully 32% of the latter did so. Similarly, more than twice as many partners of dialysis patients reported practical restrictions (81% vs 38%). Moreover, if only those respondents who provided a reply are considered (given that fully one-third of the transplanted group failed to do so because they had already said that this is not an issue), whereas >70% of the dialysis partners assessed practical restrictions as significant, >65% of the partners of transplanted patients downplayed them. Nevertheless, it should be pointed out that the fairly high proportion of one in four partners of transplanted patients reported experiencing significant practical restrictions and nearly one in three were obliged to curtail their vacations and/or leisure activities to some extent.
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 there had been no change, although when a change was reported, a higher percentage in the dialysis group reported deterioration than reported improvement (20% vs 10%), a trend which was reversed in the transplanted group (12% vs 15%). Nevertheless, almost one-third of the respondents in both groups reported that the couple had been brought together by the experience.
An adverse effect on sexual relations was reported by most of the three-quarters of partners who responded to the question, with >80% of the dialysis group reporting curtailment or cessation, compared with 55% in the transplanted group. In terms of relationships with the wider family (children, brothers, sisters, parents, cousins, etc.) and friends, about two-thirds in each group reported no change. Although overall deterioration was more common than overall improvement among those who had seen a change, positive reactions (increased presence and active support) were cited more often than negative ones (lack of understanding and denial). Twice as many dialysis partners (35%) mentioned seriously reduced availability 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 pessimistic. 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 experienced 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 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 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 dialysis were the adverse effects of dialysis (e.g. arterial damage) and the possibility that the fistula might stop working. Other concerns were common to both groups of partners, including drug side effects (37% 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 (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 information 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 transplantation, 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 010 (Figure 3), the scores given by partners of transplanted patients were significantly higher than those given by partners of patients on dialysis.
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Discussion
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The significantly higher overall quality of life assessment 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 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 transplantation 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 transplantation (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 patient can be deferred as long as possible (with all the resultant therapeutic, psychological, social and financial benefits). Some of the same concerns and needs identified in this population emerged from the COMPAS Study [8], which focused on the partners of patients with Parkinson's disease, a population that seems to be particularly hard hit, with 42% seeking 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 transplanted 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 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.
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Acknowledgments
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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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Received for publication: 2. 6.04
Accepted in revised form: 5. 1.05