The impact of intestinal transplantation on quality of life

Ambrose, Tim; Holdaway, L; Smith, Alison C.; Howe, Heather; Vokes, Lisa; Vrakas, G.; Reddy, Srikanth; Giele, Henk; Travis, Simon; Friend, Peter J.; Allan, Philip

doi:10.1016/j.clnu.2019.08.023

Cited by 13 publications

(3 citation statements)

References 41 publications

(51 reference statements)

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“…(iii) Cohort study: a group or different groups of patients were followed through time and their trajectories compared or related to an event that could change their quality of life, such as a transplantation or a traumatic occurrence [15,16]. EQ-5D has been increasingly used as a routine outcome measure in clinical practice [17][18][19].…”

Section: Resultsmentioning

confidence: 99%

The remarkably frequent use of EQ-5D in non-economic research

et al. 2021

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Introduction EQ-5D is an instrument which has been utilized for a variety of purposes, including in health-economic appraisals as an input into quality-adjusted life year (QALY) calculations. Indeed, it is the most-widely applied instrument for health-economic appraisal worldwide, and is recommended for use in QALY calculations by many national Health Technology Assessment (HTA) agencies. There is also a growing body of evidence for its usefulness in a variety of settings other than economic appraisals, but such use has not been well-documented. This study addresses this issue and documents how EQ-5D has been applied in both the non-economic and economic contexts. Methods The PubMed database was searched using the terms ‘EQ-5D’, ‘EQ-5D AND cost’, and ‘EQ-5D AND cost AND QALY’ from 1 January 1980 to 31 December 2019. We concentrated on 2019 publications for more detailed analyses. All the data collected for 2019 were downloaded and collected in EndNote. For 2019 only, we classified economic and non-economic use based on the inclusion of ‘cost’. We also checked by manual inspection whether the search terms were suitable in correctly identifying economic and non-economic use. Variants of the non-economic use of EQ-5D were classified as follows: (a) as a quality of life outcome measure; (b) as a tool for methodological research; (c) methodological issues of EQ-5D itself; (d) comparisons with other quality of life questionnaires; (e) mapping studies; (f) value sets; (g) alongside costs but no QALY calculated; and (h) other. Results The first publication found was from 1990. Up to and including 2019, 10,817 publications were identified, of which more than two in three did not contain any reference to costs or QALYs. In 2019, a total of 1409 manuscripts were identified, of which 239 were specifically for EQ-5D-5L. Four hundred and seven (28.9%) included some form of ‘costs’ and 157 (11.1%) both ‘costs’ AND ‘QALYs’ terms. For EQ-5D-5L, the corresponding numbers were 104 (43.5%) and 29 (12.1%), respectively. After manually checking all the 1409 papers, three were duplicated records, which were omitted. In the remaining 1406 papers, only 40 (2.8%) contained the term ‘cost’, but not ‘cost per QALY’, and only 117 (8.3%) were identifiable as economic evaluations using the term ‘cost per QALY’. Most non-economic use of EQ-5D was as a quality-of-life outcome measure (72.8%). Other applications were: as a tool for methodological research (6.7%); comparison studies (3.7%); EQ-5D methodological issues (3.5%); containing costs but not QALYs (2.8%); mapping (1.3%); value sets (0.4%); and other papers (0.4%). Conclusions The majority of the studies retrieved, covering a wide variety of research areas, reported upon the non-economic use of EQ-5D. Despite being the most-used instrument worldwide for QALY calculations, economic appraisal accounted for only a small, but important, part of published use.

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Section: Resultsmentioning

confidence: 99%

The remarkably frequent use of EQ-5D in non-economic research

et al. 2021

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“…The results presented do not respond to the dissatisfaction expressed by families with regard to the social support received or the low scores reported in the quality-of-life questionnaires [ 48 , 49 ]. Obviously, our results are only a first approximation of the problem.…”

Section: Discussionmentioning

confidence: 98%

Social Resources for Transplanted Children and Families in European Union Hospitals of ERN TransplantChild

et al. 2021

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Social well-being is an intrinsic part of the current concept of health. In the context of chronic disease, there are many challenges we face in order to provide social well-being to patients and their families, even more if we talk about rare diseases. TransplantChild, a European Reference Network (ERN) in paediatric transplantation, works to improve the quality of life of transplanted children. It is not possible to improve the quality of life if the human and material resources are not available. With this study, we want to identify the economic aids, facilities, services, and financed products that are offered to families in different European centres. We also want to find out who provides these resources and the accessibility to them. We designed an ad hoc survey using the EU Survey software tool. The survey was sent to representatives of the 26 ERN members. In this article we present the results obtained in relation to two of the aspects analysed: long-term financial assistance and drugs, pharmaceuticals and medical devices. Some resources are equally available in all participating centres but there are significant differences in others, such as education aids or parapharmacy product financing. A local analysis of these differences is necessary to find feasible solutions for equal opportunities for all transplanted children in Europe. The experience of centres that already provide certain solutions successfully may facilitate the implementation of these solutions in other hospitals.

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“…Numerous studies have now described measures for the assessment and follow-up of face and hand transplantation, but to date, this has not been investigated for AW-VCA [42,43]. Ambrose et al recently showed that QoL improved after ITx including patients with AW-VCA, compared to their pre-transplant intestinal failure state [44]. They employed standardized measures, including EQ-5D, SF36 and the ITx-QOL score at regular time intervals.…”

Section: Psychosocial and Quality Of Life Impact Of Aw-vcamentioning

confidence: 99%

Abdominal Wall Transplantation: Indications and Outcomes

et al. 2020

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Purpose of Review This article aims to review published outcomes associated with full-thickness vascularized abdominal wall transplantation, with particular emphasis on advances in the field in the last 3 years. Recent Findings Forty-six full-thickness vascularized abdominal wall transplants have been performed in 44 patients worldwide. Approximately 35% of abdominal wall transplant recipients will experience at least one episode of acute rejection in the first year after transplant, compared with rejection rates of 87.8% and 72.7% for hand and face transplant respectively. Recent evidence suggests that combining a skin containing abdominal wall transplant with an intestinal transplant does not appear to increase sensitization or de novo donor-specific antibody formation. Summary Published data suggests that abdominal wall transplantation is an effective safe solution to achieve primary closure of the abdomen after intestinal or multivisceral transplant. However, better data is needed to confirm observations made and to determine long-term outcomes, requiring standardized data collection and reporting and collaboration between the small number of active transplant centres around the world.

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The impact of intestinal transplantation on quality of life

Cited by 13 publications

References 41 publications

The remarkably frequent use of EQ-5D in non-economic research

The remarkably frequent use of EQ-5D in non-economic research

Social Resources for Transplanted Children and Families in European Union Hospitals of ERN TransplantChild

Abdominal Wall Transplantation: Indications and Outcomes

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