eHealth interventions for people with chronic kidney disease

This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: This review aims to look at the benefits and harms of using eHealth interventions in the CKD population

Liver transplant recipients’ experiences and perspectives of a telehealth-delivered lifestyle programme A qualitative study

Introduction Dietary modification and exercise are encouraged to address cardiometabolic risk factors after solid organ transplantation. However, the lived experience of attempting positive lifestyle changes for liver transplant recipients is not known. The aim of this study was to explore the experiences of liver transplant recipients and their perspectives of a 12-week telehealth lifestyle programme and assess the feasibility of this innovative health service. Methods Focus groups and one-on-one interviews were conducted with participants who had completed a 12-week, group-based, telehealth-delivered diet and exercise programme and thematic qualitative analysis was used to code and theme the data. Results In total, 19 liver transplant recipients participated in the study (25-68 years, median time since transplant 4.4 years, 63% male). Overarching themes included: (a) 'broad telehealth advantages' which highlighted that telehealth reduced the perceived burdens of face-to-face care; (b) 'impact of employment' which identified employment as a competing priority and appeared to effect involvement with the programme; (c) 'adapting Mediterranean eating pattern to meet individual needs' which identified the adaptability of the Mediterranean diet supported by sessions with the dietitian; (d) 'increasing exercise confidence' which recognised that a tailored approach facilitated confidence and acceptability of the exercise component of the programme. Discussion A telehealth lifestyle programme delivered by dietitians and exercise physiologists is an acceptable alternative to face-to-face care that can meet the needs of liver transplant recipients. There is a need to further innovate and broaden the scope of routine service delivery beyond face-to-face consultations

Quantification of Plasma and Urine Thymidine and 2'-Deoxyuridine by LC-MS/MS for the Pharmacodynamic Evaluation of Erythrocyte Encapsulated Thymidine Phosphorylase in Patients with Mitochondrial Neurogastrointestinal Encephalomyopathy.

Mitochondrial neurogastrointestinal encephalomyopathy (MNGIE) is an ultra-rare disorder caused by mutations in TYMP, leading to a deficiency in thymidine phosphorylase and a subsequent systemic accumulation of thymidine and 2'-deoxyuridine. Erythrocyte-encapsulated thymidine phosphorylase (EE-TP) is under clinical development as an enzyme replacement therapy for MNGIE. Bioanalytical methods were developed according to regulatory guidelines for the quantification of thymidine and 2'-deoxyuridine in plasma and urine using liquid chromatography-tandem mass spectrometry (LC-MS/MS) for supporting the pharmacodynamic evaluation of EE-TP. Samples were deproteinized with 5% perchloric acid (v/v) and the supernatants analyzed using a Hypercarb column (30 × 2.1 mm, 3 µm), with mobile phases of 0.1% formic acid in methanol and 0.1% formic acid in deionized water. Detection was conducted using an ion-spray interface running in positive mode. Isotopically labelled thymidine and 2'-deoxyuridine were used as internal standards. Calibration curves for both metabolites showed linearity (r > 0.99) in the concentration ranges of 10-10,000 ng/mL for plasma, and 1-50 µg/mL for urine, with method analytical performances within the acceptable criteria for quality control samples. The plasma method was successfully applied to the diagnosis of two patients with MNGIE and the quantification of plasma metabolites in three patients treated with EE-TP

PSYCHOSOCIAL FACTORS AND MOBILE HEALTH INTERVENTION: IMPACT ON LONG-TERM OUTCOMES AFTER LUNG TRANSPLANTATION

Identifying and intervening on modifiable risk factors may improve outcomes in lung transplantation (LTx), which, despite recent improvements, remain suboptimal. Evidence suggests that two modifiable risk factors, psychiatric disorders and nonadherence, may improve LTx outcomes in the short-term; however, neither has been explored in the long-term. Therefore, the overarching goal of this dissertation was to determine the long-term impact of these modifiable risk factors and intervention to attenuate them. First, we examined the relationship of pre- and early post-transplant psychiatric disorders on LTx-related morbidity and mortality for up to 15 years post-LTx. Our sample included 155 1-year LTx survivors enrolled in a prospective study of mental health post- LTx. We found that depression during the first year post-LTx increased risk of BOS, mortality and graft loss by nearly twofold, and that pre-transplant depression and pre- and post-transplant anxiety were not associated with clinical outcomes. Next, we examined the impact of a mobile health intervention designed to promote adherence to the post-LTx regimen, PocketPATH, on long-term LTx-related morbidity, mortality and nonadherence. We conducted two follow-up studies to the original yearlong randomized controlled trial in which participants assigned to PocketPATH showed improved adherence to the regimen, relative to usual care. Among the 182 LTx recipients (LTxRs) who survived the original trial, we found that PocketPATH had a protective indirect effect on mortality by promoting LTxRs’ communication with the LTx team during the first year. Among the 104 LTxRs who completed the follow-up assessment, we found that PocketPATH’s adherence benefits over the first year were not sustained into the long-term, although LTxRs assigned to PocketPATH were more likely than LTxRs assigned to usual care to perform the home self-care tasks of the regimen at follow-up. Median time since LTx for participants in both follow-up studies was 4.2 years (range, 2.8-5.7 years). This dissertation presents an important first step toward identifying and intervening on modifiable risk factors to improve long-term LTx outcomes. Mobile health technologies offer limitless potential to target these risk factors and others. More work is needed to determine specific features and long-term patient engagement strategies that will optimize and sustain intervention effectiveness

eHealth in transplantation

eHealth ("electronic" Health) is a new field in medicine that has the potential to change medical care, increase efficiency, and reduce costs. In this review, we analyzed the current status of eHealth in transplantation by performing a PubMed search over the last 5 years with a focus on clinical studies for post-transplant care. We retrieved 463 manuscripts, of which 52 clinical reports and eight randomized controlled trials were identified. Most studies were on kidney (n = 19), followed by liver (n = 10), solid organ (n = 7), bone-marrow (n = 6), and lung transplantation (n = 6). Eleven articles included adolescents/children. Investigated eHealth features covered the whole spectrum with mobile applications for patients (n = 24) and video consultations (n = 18) being most frequent. Prominent topics for patient apps were self-management (n = 16), adherence (n = 14), symptom-reporting (11), remote monitoring of vital signs (n = 8), educational (n = 7), and drug reminder (n = 7). In this review, we discuss opportunities and strengths of such new eHealth solutions, the implications for successful implementation into the healthcare process, the human factor, data protection, and finally, the need for better evidence from prospective clinical trials in order to confirm the claims on better patient care, potential efficiency gains and cost savings

Recommendations for the management of MPS IVA: systematic evidence- and consensus-based guidance.

IntroductionMucopolysaccharidosis (MPS) IVA or Morquio A syndrome is an autosomal recessive lysosomal storage disorder (LSD) caused by deficiency of the N-acetylgalactosamine-6-sulfatase (GALNS) enzyme, which impairs lysosomal degradation of keratan sulphate and chondroitin-6-sulphate. The multiple clinical manifestations of MPS IVA present numerous challenges for management and necessitate the need for individualised treatment. Although treatment guidelines are available, the methodology used to develop this guidance has come under increased scrutiny. This programme was conducted to provide evidence-based, expert-agreed recommendations to optimise management of MPS IVA.MethodsTwenty six international healthcare professionals across multiple disciplines, with expertise in managing MPS IVA, and three patient advocates formed the Steering Committee (SC) and contributed to the development of this guidance. Representatives from six Patient Advocacy Groups (PAGs) were interviewed to gain insights on patient perspectives. A modified-Delphi methodology was used to demonstrate consensus among a wider group of healthcare professionals with experience managing patients with MPS IVA and the manuscript was evaluated against the validated Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument by three independent reviewers.ResultsA total of 87 guidance statements were developed covering five domains: (1) general management principles; (2) recommended routine monitoring and assessments; (3) disease-modifying interventions (enzyme replacement therapy [ERT] and haematopoietic stem cell transplantation [HSCT]); (4) interventions to support respiratory and sleep disorders; (5) anaesthetics and surgical interventions (including spinal, limb, ophthalmic, cardio-thoracic and ear-nose-throat [ENT] surgeries). Consensus was reached on all statements after two rounds of voting. The overall guideline AGREE II assessment score obtained for the development of the guidance was 5.3/7 (where 1 represents the lowest quality and 7 represents the highest quality of guidance).ConclusionThis manuscript provides evidence- and consensus-based recommendations for the management of patients with MPS IVA and is for use by healthcare professionals that manage the holistic care of patients with the intention to improve clinical- and patient-reported outcomes and enhance patient quality of life. It is recognised that the guidance provided represents a point in time and further research is required to address current knowledge and evidence gaps