Abstract
ObjectivesEfforts to evaluate the health of solid organ transplant recipients are hampered by the lack of adequate patient-reported outcome measures (PROMs) targeting this group. We developed the Transplant ePROM (TXP), which is based on a novel measurement model and administered through a mobile application to fill this gap. The main objective of this article is to elucidate how we derived the weights for different items, and to report initial empirical results. Study design and settingThe nine health items in the TXP were fatigue, skin, worry, self-reliance, activities, weight, sexuality, stooling, and memory. Via an online survey solid organ recipient participating in the TransplantLines Biobank and Cohort study (NCT03272841) were asked to describe and then compare their own health state with six other health states. Coefficients for item levels were obtained using a conditional logit model. ResultsA total of 232 solid organ transplant recipients (mean age: 54 years) participated. The majority (106) were kidney recipients, followed by lung, liver, and heart recipients. Fatigue was the most frequent complaint (54%). The strongest negative coefficients were found for activities and worry, followed by self-reliance and memory. ConclusionA set of coefficients and values were developed for TXP. The TXP score approximated an optimal health state for the majority of respondents and recipients of different organs reported comparable health states.
Highlights
Assessments and comparisons of the outcomes of different medical interventions and treatment modalities, such as solid organ transplantation, from patients’ perspectives are essential [1]
Previous studies have shown that for a large proportion of patients, health-related quality of life (HRQoL) may be more relevant than length of life, and many patients are more concerned about their general health and infirmity than they are about their survival [8,9]
In our review relating to solid organ transplantation, we found out that most of the recent HRoQL instruments currently in use are not designed for transplant recipients and/or their content was obtained by experts without the patients’ involvement [11]
Summary
Assessments and comparisons of the outcomes of different medical interventions and treatment modalities, such as solid organ transplantation, from patients’ perspectives are essential [1]. Previous studies have shown that for a large proportion of patients, HRQoL may be more relevant than length of life, and many patients are more concerned about their general health and infirmity than they are about their survival [8,9]. This is especially the case for solid organ recipients for whom presently the goal of post-transplant interventions is focused on maintaining graft function and keep the patients symptom free [10]. Adequate measurement and follow-up of HRQoL in transplant recipients is pertinent for clinicians and researchers
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