The psychosocial correlates of transplant survival

April 8, 2003

Journal of Cystic Fibrosis

Volume 2, Issue 1 , March 2003, Pages 49-54

Science B. V.

The psychosocial correlates of transplant survival

Esther Serrano-Ikkos, , a and Laskb

a Great Ormond Street Hospital, Heart-Lung Transplant Unit, London WC1N

3HJ, UKb St. 's Hospital Medical School, London SW17 0RE, UK

Background: due to the shortage of organs, half of the patients on the

waiting list for transplantations die. Clinicians have a duty to identify

those patients whom might benefit most. The correlation between

psychosocial factors and survival in children who have received lung

transplantation for CF has not been investigated. Aims: to examine: (1)

differences in physical, demographic and psychological factors between

two groups of children with CF, those who did or did not survive the

waiting period for transplantation. (2) Correlations between these

factors pre-transplantation and length of survival post transplantation.

Methods: 81 childrenâ€“â€“mean age 11 years 6 monthsâ€“â€“and their parents

underwent semi-structured standardised interviews and completed

standardised instruments prior to being placed on the transplantation

waiting list. The following domains were measured: child's disability,

psychiatric status and self-esteem; quality of marital relationship and

parental psychiatric status; and family attitudes and functioning.

Results: 20% of the children on the waiting list had a psychiatric

disorder and 60% of the parents scored within the psychiatric disorder

range. One third of the parents had marital difficulties, and 20% of the

families showed chaotic functioning. Only half of the children survived

to receive transplantation. Survivors and non-survivors were comparable

with regard to all psychological measures. A follow up of the

transplanted children, ranging from 3 to 156 months post-transplantation,

produced a group of nine survivors and 30 non-survivors. Only two

pre-transplant factors showed a significant association with length of

survival after transplantation. Severe physical disability was associated

with longer survival (P=0.01), and parental hostility to partner was

associated with a shortened life span (P=0.04). No other factors were

significantly associated with length of survival. Conclusion: there is no

evidence to suggest that adverse psychosocial factors should be used as a

contraindication to transplantation. 1. Introduction

While the number of patients on transplant waiting lists has increased,

the number of transplants performed has remained constant due to a

limited supply of suitable donor organs (Unos data source, 2002). In our

centre, over half of CF patients listed for transplant die whilst on the

waiting list [1]. Because of the significant shortage of organs,

clinicians have a responsibility to maximise the benefit of the organs

available, by identifying those patients whom might benefit most. A

previous study in our centre found no evidence that `clinical status'

prior to transplant has any effect upon the post-transplant survival of

children with cystic fibrosis [2]. A key question is whether adverse

psychological factors prior to transplantation affect outcome survival.

Transplant teams often use these as a contraindication, suggesting that

such families would not be able to cope with the stresses associated with

transplantation and that survival would, therefore, be

compromised.Studies conducted in community settings have shown that even

among children exposed to the most serious disadvantages it is unusual

for more than half of those to be adversely affected, and that there are

large individual variations in response to adverse events and

circumstances [3 and 4]. Resilience involves several related elements:

(a) a sense of self-esteem/confidence; ( belief in one's one

self-efficacy and ability to deal with change and adaptation; and © a

repertoire of problem-solving approaches [4].Psychosocial research on

life-threatening conditions has in recent years focused on identifying

those protective factors that foster resilience and mediate illness

outcome, including survival. Most studies on transplant recipients have

been conducted with adults, and the results are inconclusive [5, 6 and

7]. Only two studies have investigated the influence of psychosocial

factors on transplant survival in the paediatric population [8 and 9].

The first failed to find any positive correlations between positive

parentâ€“child interaction, parental emotional support, enthusiasm for the

procedure, child's motivation and post bone marrow transplant survival

[8]. In the second study, two groups of children were compared, those who

did or did not survive 12-months post bone marrow transplantation [9].

Non-survivors scored higher in both illness severity and complications

than survivors. The child's functional impairment, family dysfunction and

whether the child was perceived as being more likeable and co-operative

accounted for 36% of the variance.Studies investigating the protective

and risk factors associated with post-transplant survival in the CF

population are lacking. The aims of this study were to

examine:Differences in physical, demographic and psychological factors

between two groups of children with CF, those who did or did not survive

the waiting period for transplantation.Correlations between these factors

pre transplantation and length of survival post transplantation.

2. Methods

Participants were children who were consecutively referred for

transplantation to Great Ormond Street Hospital NHS Trust between

December 1988 and June 1995, and their parents. Four weeks prior to the

assessment of suitability for transplantation, the families were mailed a

package containing: (a) general information about the routine assessment

process and ( information about the research and consent

forms.Following admission, the families were approached by the author and

informed consent was obtained following the Research Ethics Committee

procedures. Inclusion criteria were that: (i) the child was placed on the

waiting list; (ii) written informed consent was obtained; (iii) English

language was good enough to complete psychological assessment; (iv) the

child appeared to be within a normal range of intelligence; and (v) had

no other chronic condition.2.1. Assessment

All children underwent a detailed physical examination. Physical

disability was measured on an Index of Physical Ability, rated by the

physicians from `no disability' to `severe disability,' (e.g. uses

buggy/wheelchair and oxygen treatment) [10]. Psychological assessment

consisted of a semi-structured standardised psychiatric interview [11].

The interview was audio-recorded, and the presence or absence of

psychiatric illness was rated independently by the authors using the

ICD-10 classification of mental and behavioural disorders [12]. Children,

aged 8 and older, also completed the Piersâ€“ Children's Self-Concept

Scale [13].Parental attitudes towards both the ill child and partner were

assessed with the expressed emotion scales, which are derived from the

Camberwell Family Interview (CFI) [14]. The CFI measures five attitudes:

overinvolvement; warmth; hostility; frequency of critical comments; and

frequency of positive remarks. This instrument was chosen because it

measures the family emotional climate, and previous research has shown

that the overinvolvement, critical comments and hostility subscales have

a predictive value with regard to outcome in mental and physical

disorders. All interviews were audio-recorded, transcribed and rated

independently by two trained raters. Intra-class correlation among raters

ranged from 0.76 to 0.97.Family functioning was rated independently by

the clinical nurse specialist and the first author on a three-point

scale: good; moderate; and chaotic functioning [15]. The intra-class

correlation was 0.91, and disagreements about the ratings were resolved

through discussion.Demographic data about the family were obtained from

the parental interviews. Parents completed the Golombock Rust Inventory

of Marital State (GRIMS) [16] to assess the quality of the marital

relationship and the General Health Questionnaire (GHQ-28) [17], to

detect psychiatric disorder.2.2. Statistical analyses

The statistical package for the social sciences (SPSS, 1999) was used to

analyse the data. Selected parametric and non-parametric tests were used

for comparisons between children who survived the waiting period for

transplantation and those who did not. Relationships between the

demographic, illness-related and psychosocial variables measured

pre-transplantation and survival time after transplantation were studied

using proportional hazard models. Length of survival was calculated

in months from time of transplantation to time of death or, for those

still living, to time of data analysis. The status variable was the

outcome at the time data analysis (alive death). A level of 0.05 was used

as a criterion for statistical significance. Because of the number of

potential predictor variables examined relative to our sample size,

variables were entered in the initial model in stages, similar to the

approach used by Andrykowski et al. [18].

3. Results

Of the 84 families who met inclusion criteria, two refused participation

and one child was removed from the waiting list, as he experienced a

significant improvement in physical health. The families of 81 children

participated, and their characteristics are presented in Table 1 and

Table 2. (There was variation regarding completion of instruments. Only

50 children completed the Piers and Self-Concept Scale, because of

the child's young age or severity of illness. Parents in 61 families

completed the GHQ-28 scale. Eleven parents did not complete the marital

scale as they were single.) Twenty percent of the children and 60% of the

parents scored within the psychiatric disorder range; and 20% of the

families scored within the range of chaotic functioning.

Table 1. Child's illness-related and demographic characteristicsÂ (13K)

Table 2. Child's and parents' psychological characteristicsÂ (15K)

3.1. Group differences at baseline

Less than half of the children survived to receive transplantation.

Comparison of survivors and non-survivors are presented in Table 3 and

Table 4. There were no statistical differences between the groups with

the exception that a higher proportion of parents in the non-survivor

group scored within the psychiatric range, suggesting a higher level of

distress.

Table 3. Comparison of demographic and illness-related characteristics

(17K)

Table 4. Comparison of psychological and family characteristicsÂ (22K)

3.2. Relation to survival

Nine out of 39 children who received transplantation were still alive at

the completion of the study. Table 5 illustrates the univariate

survival analyses of demographic, illness-related and psychological

variables. Younger age and severe disability were associated with longer

post-transplant survival. Pre-transplant hostility towards a marital

partner was associated with shorter survival post transplantation. When

these three variables were entered into a stepwise regression model,

the physical ability index and hostility, but not child's age, remained

significantly associated with length of survival (model 2=17.29;

P<0.001).

Table 5. Univariate cox survival hazard analysisÂ (22K) A positive B

weight indicates an association between higher scores on a variable and

decreased length of survival.

4. Discussion

This is the first study comparing characteristics of child survivors and

non-survivors of the waiting period for transplantation; and examining

length of post-transplant survival in relation to pre-transplant

psychosocial measures. The results show that:20% of the children and 60%

of the parents scored within the psychiatric disorder range at the time

of assessment; and that 20% of the families scored within the range of

chaotic functioning;Child and family characteristics were similar in

survivors and non-survivors of the waiting period for transplantation,

although there was a higher level of distress at assessment in the

parents of subsequent non-survivor;Greater disability prior to

transplantation was associated with increased survival post

transplantation; whilst pre-transplantation parental hostility towards

the partner was associated with shorter survival.The levels of

psychiatric and family morbidity found in the present study are higher

than that reported in other studies [8 and 9]. The discrepancies might be

due to differences in both the illnesses being studied and the research

designs. There is a paucity of data with regard to differences between

survivors and non-survivors while awaiting paediatric transplantation.

The higher level of parental distress, as shown by the GHQ-28 ratings,

found in the non-survivors when compared to the survivors is of interest

in the context of previous reports: increased parental distress has been

reported in association with greater severity of illness [19]. However,

in the present study, the illness-related measures indicated no

significant differences between the waiting list survivors and

non-survivors, although there was a trend towards more disability in the

latter group. It is possible that following the assessment, there were

differences amongst the two groups with regard to medical course and

other factors, (e.g. parental perception of illness severity,

illness-related fears and negative responses from family and friends,

hope) which were not measured in the study but have found to be mediators

of parental distress in the literature on paediatric chronic illness [19,

20 and 21].In contrast with the findings of McConville et al. [9], this

study failed to show that chaotic family functioning and psychiatric

illness were risk factors associated with a shorter length of survival

post transplantation. Greater disability prior to transplantation was

associated with an increased survival post transplantation. To understand

this finding, correlations were conducted between all psychological and

illness-related measures. A positive correlation was found between

parental overinvolvement and disability (r=0.385; P=0.01). It is possible

that parental overinvolvement has a beneficial effect on management of

physiotherapy and other aspects of treatment, resulting in a better

long-term outcome after transplantation. This study also showed that

hostility towards the partner was associated with shorter survival.

Everson et al. [22] found similar results with adults with heart disease.

More research is needed exploring the predictive value of the expressed

emotion scales.

5. Conclusions

There was a high rate of psychiatric disorder in the children and their

parents, as well a high level of marital problems and family dysfunction.

Psychosocial assessment should form part of the overall assessment and

psychological treatments offered as required. The lack of strong

associations between adverse psychosocial factors and length of survival

suggests that the presence of adverse psychosocial factors should not be

used as a contraindication to transplantation. Further research should be

focused on identifying other factors that might be associated with

resilience as a means of prolonging survival after transplantation.

Becki

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April 8, 2003