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1.
Clin Nutr ; 39(6): 1958-1967, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31522787

RESUMO

INTRODUCTION: Intestinal failure (IF) and intestinal transplant (ITx) are associated with poor quality of life (QoL). Disease-specific assessment of QoL for IF and ITx is challenging, owing to the different problems encountered. We have sought to compare QoL pre-ITx with post-ITx and have compared generic QoL with a stable IF population. METHODS: Two prospectively maintained databases of patients referred for and undergoing ITx and a chronic (Type 2 & 3) IF cohort were interrogated. QoL instruments used were generic (EQ-5D-5L and SF-36) and disease-specific (HPN-QOL and ITx-QOL). Analysis used Student's t-test and one-way ANOVA with Bonferroni correction for multiple comparisons. Data were collected pre- and post-ITx at 3, 6, 12-months and yearly thereafter. RESULTS: All QoL instruments improved following ITx to levels comparable with a cohort of stable IF patients not requiring ITx. Both the visual analogue score component (EQ-5D-5L) and the effect of underlying illness on QoL (HPN-QOL/ITx-QOL) were higher following ITx than either pre-ITx or when compared with the IF cohort. Effects on general health, ability to eat and drink, to holiday and travel were improved as early as 3 months post-ITx. Other components did not before 6-12 months following ITx, but were maintained to at least 24 months. Patient personal financial pressures are greater following ITx, even in a publicly funded healthcare system. CONCLUSION: ITx has beneficial effects on QoL compared to those assessed for or awaiting ITx. QoL following ITx is similar to patients with IF not requiring ITx. A QoL instrument that covers the journey of patients from IF through ITx would assist longitudinal analysis of the value and timing of ITx at an individual level.


Assuntos
Enteropatias/cirurgia , Intestinos/transplante , Transplante de Órgãos , Nutrição Parenteral no Domicílio , Qualidade de Vida , Inquéritos e Questionários , Adulto , Idoso , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Bases de Dados Factuais , Feminino , Humanos , Enteropatias/diagnóstico , Enteropatias/fisiopatologia , Enteropatias/psicologia , Masculino , Pessoa de Meia-Idade , Transplante de Órgãos/efeitos adversos , Nutrição Parenteral no Domicílio/efeitos adversos , Valor Preditivo dos Testes , Estudos Retrospectivos , Resultado do Tratamento , Adulto Jovem
2.
Clin Transplant ; 30(7): 760-6, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-27140671

RESUMO

The follow-up after intestinal transplantation (ITX) is complex and limited to specialized centers. ITX recipients often travel all over the country to be seen in the outpatient clinic of specialized centers which is costly and time-consuming. Videoconferences through Skype have been implemented to eliminate travel time, costs, and to improve patient compliance without jeopardizing safety. Eighteen of 19 patients followed up after ITX or modified multivisceral transplantation (MMVTX) in conventional outpatient clinics in Oxford agreed to attend additional Skype clinics. All patients who were followed up through Skype clinics after ITX/MMVTX received a questionnaire to measure their satisfaction with methods and technical aspects of videoconferencing as well as time/mode of traveling, travel expenses/costs, waiting time in outpatient clinic and patients' satisfaction. Mean travel distance to Oxford was 236 ± 168 miles, mean travel time was 277 ± 175 min, and mean travel cost was 200 ± 56 Great Britain Pounds. A total of 56% had to take time off work and/or find child/family care for the time spent in travel. These patients reported a satisfaction score of 4.38 ± 0.77 of 5 points as opposed to 2.88 ± 0.90 for attending the conventional outpatient clinic. Skype clinics have been proven successful and feasible in highly specialized fields like ITX in eligible patients.


Assuntos
Intestinos/transplante , Cuidados Pós-Operatórios/métodos , Consulta Remota/métodos , Viagem , Comunicação por Videoconferência/organização & administração , Adulto , Feminino , Seguimentos , Humanos , Masculino , Transplante de Órgãos , Satisfação do Paciente , Inquéritos e Questionários , Reino Unido
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