The Transplant Effects Questionnaire (TxEQ): The development of a questionnaire for assessing the multidimensional outcome of organ transplantation — example of end stage renal disease (ESRD)

Abstract

OBJECTIVES: To develop a questionnaire to assess the responses of transplant recipients to the receipt of an organ, including their self-care behaviour. DESIGN: Following a literature review, open-ended interviews and a focus group, a transplant questionnaire was developed. Two studies (Study 1: N = 231, Study 2: N = 105) were conducted to evaluate its psychometric properties. METHODS: A pool of 51 items was derived from themes identified in published studies and from interviews and a focus group discussion with renal transplant recipients. These were constructed into a questionnaire and were then administered to two renal transplant out-patients populations. Item responses of study sample 1 were subjected to principal components analysis (PCA) using varimax rotation to examine the structure of responses. In order to investigate the stability of the factor structure found in Study 1, item responses of the second sample were subjected to confirmatory factor analysis (CFA) using structural equation modelling. RESULTS: PCA indicated six factors that accounted for 64.2% of the variance. With extraneous items omitted, the final questionnaire derived from Study 1 has 24 items clustered around five conceptual coherent factors: worry about transplant (22.1%), guilt regarding donor (11.9%), disclosure (9.58%), medication adherence (8.73%), and responsibility (6.63%). CFA on the final 24-item version of the TxEQ revealed that the resulting model was a good fit for the Study 2 data (RMSEA = 0.08, pclose =.005). CONCLUSIONS: The TxEQ has potential application as a measure in the area of transplantation research. CFA demonstrated that the factor structure of the TxEQ is consistent across different renal transplant out-patients populations. Further research is currently in progress to assess other groups of transplant recipients and to examine its relationship to other measures.

Predicting intentions and adherence behavior in the context of organ transplantation: Gender differences of provided social support

“…Adherence to the prescribed immunosuppressive medications was assessed by self-report using the five-item adherence subscale of the German version of the Transplant Effects Questionnaire (TxEQ-D [23]; German version [24]. The German version of this instrument has been validated [21].…”

“…Second, the measure of adherence behavior was a self-report measure and was thus prone to bias compared to an objective measure. However, potential bias is limited as we employed a well-validated measure [23]. Future studies, however, should also include objective measures of adherence behavior.…”

Psychological rejection of the transplanted organ and graft dysfunction in kidney transplant patients

“…Some quantitative data are available since the subjective experience of transplanted organ recipients has been investigated. [13][14][15][16][17][18][19][20] But there appears to be no widely used psychometrically sound instruments to assess mental representations of the transplanted organ and the psychological rejection. The transplantationspecific measures have been designed especially to measure specific concepts such as symptom experience, knowledge about transplant regimen, body image, stressors of organ transplantation, or understanding of self-care principles.…”

“…[12][13][14][15][16][17][18][19] With the Transplant Effects Questionnaire, researchers can evaluate worry about the transplant, guilt about the donor, disclosure, responsibility, and medication compliance. 20 Corruble et al realized that no specific questionnaire dedicated to the measurement of the representations of the transplanted organ is available. 1 But the foreign organ is a key element of the recipient's daily life, and these representations are neither spontaneously expressed by patients.…”

Facial Transplantation

“…3,15,35,38,65 In sum, organ transplantation may induce a set of stresses and psychosocial problems. 66 These fears and anxieties would likely be exacerbated in the case of facial FACIAL TRANSPLANTATION/SIEMIONOW, KULAHCI transplantation because of such issues as identity and communication, psychological vulnerability, expectations of outcome, consequences of transplant failure, adherence to treatment regimens, and encounters with the reactions of others to altered appearance. 39 On October 15, 2004, after 10 months of debate on the medical, ethical, and psychological issues related to facial transplantation, the Cleveland Clinic's Institutional Review Board (IRB) approved the first protocol for facial transplantation presented by Dr. Maria Siemionow.…”