Self-reported health status after solid-organ transplantation:The development and application of an innovative assessment method

This PhD research is about assessment of health-related quality of life (HRQoL), which is a topic rapidly gaining ground in the medical field. HRQoL, which is also referred to as perceived health status, well-being, or simply quality of life, not only includes mental, and social domains, but also physical domains. Patient-reported outcome measures (PROMs) are among the best known tools used for measuring HRQoL. Generic PROMs, such as SF-36 and EQ-5D, were generally applied in previous studies to assess the effects of solid organ transplantation on HRQoL. These PROMs have proven to be beneficial in measuring patients’ health statuses and outcomes associated with various health-care interventions. However, because they are generic, these PROMs do not contain health items that are specifically relevant to solid organ transplant recipients. This doctoral research provides a description of the step-wise process that was developed to generate health items for a new transplant-specific patient-centered electronic PROM: TXP. A five-step, sequential, mixed-methods design was applied: a scoping literature review, expert meetings, focus group discussions with solid organ recipients, a special judgmental task administered through an online survey, and expert meetings were held to make the final selection of health items. Ultimately, nine health items were chosen for inclusion in the TXP: fatigue, skin, worry/anxiety, self-reliance, activities, weight, sexuality, stooling, and memory/concentration. These health items reflect the most prominent issues experienced by transplant recipients and were derived using a patient-centered approach. TXP generates a single numeric score, using only nine health items, for assessing the overall HRQoL of different solid organ recipients

A Scoping Review of Key Health Items in Self-Report Instruments Used Among Solid Organ Transplant Recipients

The overall aim of this scoping review of the literature is twofold: (1) to provide an overview of all instruments that have been used to assess health-related quality of life (HRQoL) after solid organ transplantation and (2) to provide a list of health items they include to support future studies on the development of a new-generation HRQoL instrument. All studies that administered any form of HRQoL instrument to post-transplant solid organ recipients were identified in a comprehensive search of PubMed (MEDLINE), Embase, and Web of Science, with a cut-off date of May 2018. The search used various combinations of the following keywords: lung, heart, liver, kidney, or pancreas transplantation; quality of life; well-being; patient-reported outcome; instrument; questionnaire; and health survey. In total, 8013 distinct publications were identified and 1218 of these were selected for review. Among the instruments applied, 53 measured generic, 51 organ-specific, 271 domain-specific, and 43 transplant-specific HRQoL. A total of 78 distinct health items grouped into 16 sub-domains were identified and depicted graphically. The majority of publications did not report a logical rationale for the choice of specific HRQoL instrument. The most commonly used types of instruments were generic health instruments, followed by domain-specific instruments. Despite the availability of transplant-specific instruments, few studies applied these types of instruments. Based on the 78 items, further research is planned to develop a patient-centered, transplant-specific HRQoL instrument that is concise, easy to apply (mobile application), and specifically related to the health issues of solid organ recipients

Health items with a novel patient-centered approach provided information for preference-based transplant outcome measure

Objectives: Patient-reported outcome measures (PROMs) are widely applied to assess perceived health status. To date, no transplant-specific PROM is available for generating a single, standardized score regarding the health status of transplant recipients. The objective of this study is to generate health items for a new patient-centered PROM for organ recipients: the Transplant PROM (TXP). Study Design and Setting: A five-phase, mixed-method approach was applied to identify and select the health items: scoping literature review, expert meetings, focus-group meetings with organ recipients, a special judgmental task within an online survey, and expert meetings for final selection of health items. Results: Based on a previously published scoping literature review, a first round of expert meetings, and a total of four focus-group meetings with kidney, lung, and liver transplant recipients (N = 18), a list of 83 relevant health items relating to post-transplant life was selected. In an online survey, 183 transplant recipients selected the 10 most important health items from this list. After evaluating the frequency of selected health items and combining items that assess closely related or similar concepts in the second round of expert meetings, nine health items were chosen to be included in TXP: fatigue, skin, worry/anxiety, self-reliance, activities, weight, sexuality, stooling, and memory/concentration. Conclusion: The nine TXP health items reflect the most prominent issues transplant recipients experience. The TXP can be administered by means of a mobile phone app

Using a novel concept to measure outcomes in solid organ recipients provided promising results

Objectives: Efforts 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 setting: The 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. Results: A 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. Conclusion: A 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. (c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/

Long-Term Outcome of Bariatric Surgery in Morbidly Obese Adolescents: A Systematic Review and Meta-Analysis of 950 Patients with a Minimum of 3 years Follow-Up

Background: Obesity in pediatric and adolescent population has reached a universal pandemic. This study aimed to summarize the literature on the longest available outcome of bariatric surgery in morbidly obese adolescents. Methods :A systematic review was conducted to pool available data on the longest available (> 3 years) weight loss and comorbidity resolution outcome in adolescent bariatric surgery. Results: A total of 14 studies reporting the result of bariatric surgery after 3 years in 950 morbidly obese adolescents were included. Preoperative age and BMI ranged from 12 to 19 years and from 26 to 91 kg/m(2), respectively. Females were the predominant gender (72.8%). Laparoscopic roux-en-Y gastric bypass (n = 453) and adjustable gastric banding (n = 265) were the most common bariatric procedure performed. The number of patients at the latest follow-up was 677 (range from 2 to 23 years). On average, patients lost 13.3 kg/m(2) of their BMI. Among comorbidities, only diabetes mellitus resolved or improved dramatically. Of 108 readmissions, 91 led to reoperation. There was a weight regain <5 kg/m(2) between 5 and 6 years of follow-up. Removal, exchange, or conversion of the previous band constituted the majority of the revisional procedures. Three deaths were reported. No long-term data was obtainable on nutritional deficiency or growth status of adolescents who underwent a bariatric procedure. Conclusion: Although bariatric surgery is a safe and effective procedure in the treatment of adolescent morbid obesity, long-term data is scarce regarding its nutritional and developmental complication in this growing population of patients