Living Well on Haemodialysis: feasibility and acceptability trial of an online Acceptance and Commitment Therapy (ACT) programme for people receiving kidney haemodialysis

Background People receiving kidney haemodialysis need psychological support. Objectives To assess feasibility and acceptability of a 4-week online video-based Acceptance and Commitment Therapy (ACT) programme for people receiving kidney haemodialysis. Design Single group before-and-after study. Participants People with end-stage kidney disease currently receiving dialysis, who had received in-centre haemodialysis at least 90 days in the last two years. Measures Recruitment, retention and engagement (feasibility); weekly and post-programme feedback (acceptability); pre-intervention and 4-week follow-up (potential outcome measures): kidney disease quality of life (KDQOL-SF), psychological flexibility (Acceptance and Action Scale) and acceptance of illness (Acceptance of Illness Scale). Results The study recruited 13 participants of whom 85% completed at least half the programme and 69% completed the whole programme. Health and medical treatment issues were the main known reasons for non-participation and drop-out. Of the 16 separate elements of the programme (four ‘story’ videos and 12 videos explaining ACT techniques), 13 were positively evaluated by at least 75% of participants. Of 11 aspects of the programme, 8 were positively evaluated by at least 75% of participants, and 89% found the programme easy to use, understood how it worked, found it easy to access, trusted the information, had no technical difficulties, and understood the activities. However, only 66.7% agreed the programme was interesting and only 62.5% agreed they enjoyed the programme. All responding participants indicated they would recommend the programme to people starting dialysis. The direction of change was positive for 17/21 potential outcome measures, with significant (p < 0.05) improvements in psychological flexibility and energy/fatigue. Conclusions An online video-based ACT intervention was feasible and acceptable for people receiving kidney haemodialysis and the results provide pilot data for a planned larger trial

Randomized multicentre pilot study of sacubitril/valsartan versus irbesartan in patients with chronic kidney disease: United Kingdom Heart and Renal Protection (HARP)- III—rationale, trial design and baseline data

BACKGROUND: Patients with chronic kidney disease (CKD) are at risk of progression to end-stage renal disease and cardiovascular disease. Data from other populations and animal experiments suggest that neprilysin inhibition (which augments the natriuretic peptide system) may reduce these risks, but clinical trials among patients with CKD are required to test this hypothesis. METHODS: UK Heart and Renal Protection III (HARP-III) is a multicentre, double-blind, randomized controlled trial comparing sacubitril/valsartan 97/103 mg two times daily (an angiotensin receptor-neprilysin inhibitor) with irbesartan 300 mg one time daily among 414 patients with CKD. Patients ≥18 years of age with an estimated glomerular filtration rate (eGFR) of ≥45 but &lt;60 mL/min/1.73 m2 and urine albumin:creatinine ratio (uACR) &gt;20 mg/mmol or eGFR ≥20 but &lt;45 mL/min/1.73 m2 (regardless of uACR) were invited to be screened. Following a 4- to 7-week pre-randomization single-blind placebo run-in phase (during which any current renin-angiotensin system inhibitors were stopped), willing and eligible participants were randomly assigned either sacubitril/valsartan or irbesartan and followed-up for 12 months. The primary aim was to compare the effects of sacubitril/valsartan and irbesartan on measured GFR after 12 months of therapy. Important secondary outcomes include effects on albuminuria, change in eGFR over time and the safety and tolerability of sacubitril/valsartan in CKD. RESULTS: Between November 2014 and January 2016, 620 patients attended a screening visit and 566 (91%) entered the pre-randomization run-in phase. Of these, 414 (73%) participants were randomized (mean age 63 years; 72% male). The mean eGFR was 34.0 mL/min/1.73 m2 and the median uACR was 58.5 mg/mmol. CONCLUSIONS: UK HARP-III will provide important information on the short-term effects of sacubitril/valsartan on renal function, tolerability and safety among patients with CKD

Vissen in windmolenparken: inventarisatie van de (on)mogelijkheden

Steeds meer gebieden op de Noordzee worden gebruikt voor verschillende activiteiten waaronder visserij, olie en gaswinning, energie en scheepvaart. Een van deze activiteiten is windenergie op zee. Scheepvaart in windmolenparken is momenteel verboden met uitzondering van onderhoud-, monitoring- en onderzoekvaartuigen. Dit heeft als gevolg dat vissers niet worden toegelaten in windmolenparken en steeds meer visgronden kwijtraken. Vissers zoeken naar mogelijkheden om in gebieden waar windparken staan toch activiteiten te kunnen ontplooien. Een aantal bedrijven en organisaties (waaronder een aantal staandwant vissers, de overheid en de wind-energiesector) zijn een project gestart op zoek naar mogelijkheden voor het openstellen van windparken. Aan IMARES en LEI is gevraagd om bestaande kennis van de (on)mogelijkheden van visserij in windmolenparken op een rij te zetten

“I didn’t have any option”: Experiences of people receiving in-centre haemodialysis during the COVID-19 pandemic

People receiving in-centre haemodialysis (ICHD) during the COVID-19 pandemic had to adjust to more challenging treatment conditions. To explore people’s experiences of adjustment to ICHD during the pandemic. Thematic analysis of in-depth, semi-structured interviews with 14 adult UK ICHD patients. Findings: Four themes were identified: ‘perceptions of the threat’, ‘impacts on treatment’, ‘impaired communication’ and ‘coping and positive adjustment’. These described participants’ experiences of vulnerability to COVID-19; the ways the pandemic affected dialysis and clinical care; the impact that measures to reduce viral transmission had on communication and interaction within dialysis units; and ways that participants coped and made positive adjustments to the adversities imposed by the pandemic. The findings give insights into adjustment during extreme adversity. They also help to identify ways that support for ICHD patients could be improved as pandemic conditions recede, and ways that dialysis units could prepare for future outbreaks of infectious illness

Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling

<p>Abstract</p> <p>Background</p> <p>This study examined: (1) levels of cancer-specific distress more than one year after genetic counselling for hereditary nonpolyposis colorectal cancer (HNPCC); (2) associations between sociodemographic, clinical and psychosocial factors and levels of distress; (3) the impact of genetic counselling on family relationships, and (4) social consequences of genetic counselling.</p> <p>Methods</p> <p>In this cross-sectional study, individuals who had received genetic counselling for HNPCC during 1986–1998 completed a self-report questionnaire by mail.</p> <p>Results</p> <p>116 individuals (81% response rate) completed the questionnaire, on average 4 years after the last counselling session. Of all respondents, 6% had clinically significant levels of cancer-specific distress (Impact of Event Scale, IES). Having had contact with a professional psychosocial worker for cancer risk in the past 10 years was significantly associated with higher levels of current cancer specific distress. Only a minority of the counselees reported any adverse effects of genetic counselling on: communication about genetic counselling with their children (9%), family relationships (5%), obtaining life insurance (8%), choice or change of jobs (2%), and obtaining a mortgage (2%).</p> <p>Conclusion</p> <p>On average, four years after genetic counselling for HNPCC, only a small minority of counselled individuals reports clinically significant levels of distress, or significant family or social problems.</p

Impact of patient-accessible electronic medical records in rheumatology: use, satisfaction and effects on empowerment among patients

Background To measure the use, satisfaction and impact of a web portal which provides patients with rheumatoid arthritis home access to their electronic medical records (EMR). Methods A pretest-posttest study was conducted among 360 patients. Questionnaires assessed socio-demographics, health literacy, Internet use, disease characteristics, patient-provider relationship and empowerment before and after launching a hospital-based patient web portal. To measure the impact of the portal, patients’ satisfaction with care, trust in their rheumatologist, self-efficacy in patient-provider communication, illness perceptions, and medication adherence were assessed. The post-test included questions on portal use, satisfaction, and self-perceived impact due to portal use. Results 54% of respondents with Internet access had viewed their EMR. Respondents were positive about the ease of use and usefulness of the portal and reported very few problems. Age (P = .03), amount of Internet use (P = .01) and self-perceived Internet skills (P = .03) significantly predicted portal use. Of the respondents who had logged in, 44% reported feeling more involved in their treatment and 37% felt they had more knowledge about their treatment. Significant differences over time were not found on the empowerment-related instruments. Conclusions The current portal succeeded in offering patients access to their EMR in a usable and understandable way. While its true impact is difficult to grasp, a relevant portion of the patients felt more involved in their treatment due to the web portal. Offering patients home EMR access, therefore, appears to be a valuable addition to the care proces

An Exploration of Successful Psychosocial Adjustment to Long-Term In-Centre Haemodialysis

Objectives: Haemodialysis extends life for people with end-stage kidney disease (ESKD) worldwide, but it imposes significant psychosocial burdens and there is little evidence about successful adjustment. This study aimed to improve understanding of successful psychosocial adjustment to in-centre haemodialysis (ICHD; dialysis in a hospital or satellite unit). Methods: Individual semi-structured interviews were conducted with a purposive sample of 18 people with ESKD who had all received in-centre haemodialysis in the UK for at least 90 days in the last two years. An inductive thematic analysis was employed to identify themes from the verbatim interview transcripts. Results: There were four themes: 1) reaching a state of acceptance, which described the importance of accepting the necessity of dialysis; 2) taking an active role in treatment, which described how being actively involved in treatment gave participants greater feelings of autonomy and control; 3) utilising social support networks, which described the benefits of instrumental and emotional support; and 4) building emotional resilience, which described the importance of optimism and positivity. Conclusions: The themes demonstrated elements of successful adjustment that could be targeted by interventions to promote psychological flexibility and positive adjustment among people receiving in-centre haemodialysis worldwide

Validation of the EORTC QLQ-GINET21 questionnaire for assessing quality of life of patients with gastrointestinal neuroendocrine tumours

Background:Quality of life is an important end point in clinical trials, yet there are few quality of life questionnaires for neuroendocrine tumours.Methods:This international multicentre validation study assesses the QLQ-GINET21 Quality of Life Questionnaire in 253 patients with gastrointestinal neuroendocrine tumours. All patients were requested to complete two quality of life questionnaires - the EORTC Core Quality of Life questionnaire (QLQ-C30) and the QLQ-GINET21 - at baseline, and at 3 and 6 months post-baseline; the psychometric properties of the questionnaire were then analysed.Results:Analysis of QLQ-GINET21 scales confirmed appropriate aggregation of the items, except for treatment-related symptoms, where weight gain showed low correlation with other questions in the scale; weight gain was therefore analysed as a single item. Internal consistency of scales using Cronbach's α coefficient was >0.7 for all parts of the QLQ-GINET21 at 6 months. Intraclass correlation was >0.85 for all scales. Discriminant validity was confirmed, with values <0.70 for all scales compared with each other.Scores changed in accordance with alterations in performance status and in response to expected clinical changes after therapies. Mean scores were similar for pancreatic and other tumours.Conclusion:The QLQ-GINET21 is a valid and responsive tool for assessing quality of life in the gut, pancreas and liver neuroendocrine tumours

Knowledge gaps in late-onset neonatal sepsis in preterm neonates: a roadmap for future research

Late-onset neonatal sepsis (LONS) remains an important threat to the health of preterm neonates in the neonatal intensive care unit. Strategies to optimize care for preterm neonates with LONS are likely to improve survival and long-term neurocognitive outcomes. However, many important questions on how to improve the prevention, early detection, and therapy for LONS in preterm neonates remain unanswered. This review identifies important knowledge gaps in the management of LONS and describe possible methods and technologies that can be used to resolve these knowledge gaps. The availability of computational medicine and hypothesis-free-omics approaches give way to building bedside feedback tools to guide clinicians in personalized management of LONS. Despite advances in technology, implementation in clinical practice is largely lacking although such tools would help clinicians to optimize many aspects of the management of LONS. We outline which steps are needed to get possible research findings implemented on the neonatal intensive care unit and provide a roadmap for future research initiatives. Impact This review identifies knowledge gaps in prevention, early detection, antibiotic, and additional therapy of late-onset neonatal sepsis in preterm neonates and provides a roadmap for future research efforts. Research opportunities are addressed, which could provide the means to fill knowledge gaps and the steps that need to be made before possible clinical use. Methods to personalize medicine and technologies feasible for bedside clinical use are described.Pharmacolog