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Facilitating the adherence journey of children, adolescents, and adults on long-term growth hormone therapy.
No full textGrowth hormone deficiency in children and adolescents is treated with recombinant growth hormone injections, with the aim of helping patients reach a final height that falls within their genetically predicted adult height. While this treatment is very successful, overcoming issues of patient adherence is a challenge at each stage of the treatment journey, from early childhood to adulthood. An advisory board of senior endocrine nurses convened to discuss what strategies and tools work well in achieving adherence, and the best practices they identified-including the key strategies of choice, information, teamwork, and support-were presented at the 2016 meeting of The Endocrine Society. The advisers agreed that key steps to improve adherence include: patient/carer-centric endocrine nursing services, good-quality education and support, patient autonomy (where possible), broader treatment choice (in terms of device and self-injection), optimal follow-up from childhood to adulthood, and sharing of best practices
A rare case of nasal gout.
No full textGout is an increasingly common metabolic disorder worldwide. Classical presentation is with acute attacks of arthritis affecting the first metatarsophalangeal joint. With disease progression, tophi may also appear. We present an unusual case of nasal gout in a 55-year-old man who was referred to the Ear, Nose and Throat department with irregularity over the nasal bones and episodic pain. We discuss the work up, diagnosis and management of this case and review the limited literature on this topic
Study protocol for a multicenter prospective cohort study on esophagogastric anastomoses and anastomotic leak (the Oesophago-Gastric Anastomosis Audit/OGAA).
No full textEsophagectomy is a mainstay in curative treatment for esophageal cancer; however, the reported techniques and outcomes can vary greatly. Thirty-day mortality of patients with an intact anastomosis is 2-3% as compared to 17-35% in patients who have an anastomotic leak. The subsequent management of leaks postesophagectomy has great global variability with little consensus on a gold standard of practice. The aim of this multicentre prospective audit is to analyze current techniques of esophagogastric anastomosis to determine the effect on the anastomotic leak rate. Leak rates and leak management will be assessed to determine their impact on patient outcomes. A 12-month international multicentre prospective audit started in April 2018 and is coordinated by a team from the West Midlands Research Collaborative. This will include patients undergoing esophagectomy over 9 months and encompassing a 90-day follow-up period. A pilot data collection period occurred at four UK centers in 2017 to trial the data collection form. The audit standards will include anastomotic leak and the conduit necrosis rate should be less than 13% and major postoperative morbidity (Clavien-Dindo Grade III or more) should be less than 35%. The 30-day mortality rate should be less than 5% and the 90-day mortality rate should be less than 8%. This will be a trainee-led international audit of esophagectomy practice. Key support will be given by consultant colleagues and anesthetists. Individualized unit data will be distributed to the respective contributing sites. An overall anonymized report will be made available to contributing units. Results of the audit will be published in peer-reviewed journals with all collaborators fully acknowledged. The key information and results from the audit will be disseminated at relevant scientific meetings
Cytokines and Fatigue in Sjogren's Syndrome: An Evolving Landscape.
No full textWe thank Chiche et al for their interest in our study. Sjogren's syndrome (SS) patients consistently report profound, debilitating fatigue as the single symptom which most severely decreases their quality of life. Although this information should inform drug development efforts, the voice of the patient has not been well represented in SS clinical trials. The primary endpoint in many of the clinical studies over the past decade have relied on the European Union Against Rheumatism (EULAR) Sjogren's Syndrome Disease Activity Index (ESSDAI), which does not measure fatigue or dryness, the chief complaints of these patients
Cardiac and Liver Disease in Children: Implications for Management Before and After Liver Transplantation.
No full textThere is close interaction between the functions of the liver and heart affecting the presentation, diagnosis, and outcome of acute and chronic cardiac and liver disease. Conditions affecting both organ systems should be considered when proposing transplantation because the interaction between cardiac disease and liver disease has implications for diagnosis, management, selection for transplantation, and, ultimately, for longterm outcomes after liver transplantation (LT). The combination of cardiac and liver disease is well recognized in adults but is less appreciated in pediatric patients. The focus of this review is to describe conditions affecting both the liver and heart and how they affect selection and management of LT in the pediatric population
Creating a Health Utility Value for Birdshot Chorioretinopathy.
No full textPURPOSE
To create a health utility value for birdshot chorioretinopathy (BCR) using Time Trade-Off (TTO) and Standard Gamble (SG) utilities.
METHOD
Adult BCR patients completed TTO, SG, EQ-5D-5L, and NEI VFQ-25 questionnaires and underwent a detailed history and clinical examination.
RESULTS
A total of 28 BCR patients (9 M, 19 F; mean age 62 years, range 47-83) were included. There were 22 patients with a logMAR vision of 0.3 or better in both eyes. Mean TTO was 0.90 ± SD 0.18 (range 0.33-1.0) and mean SG was 0.94 ± SD 0.14 (range 0.5-1.0). TTO correlated with EQ-5D-5L index value ( = .024) and NEI VFQ-25 composite score ( = .015).
CONCLUSIONS
Of 28 patients with BCR, 11 would trade remaining life (mean 5.4 years), and 6 would take a risk of immediate death (mean 28% risk), in return for perfect vision in both eyes for the rest of their life
Implications of Driver and Vehicle Licensing Agency guidelines in an adult congenital heart disease population.
No full textConsiderations for the treatment of pancreatic cancer during the COVID-19 pandemic: the UK consensus position.
No full textThe coronavirus disease 2019 (COVID-19) pandemic epicentre has moved to the USA and Europe, where it is placing unprecedented demands on healthcare resources and staff availability. These service constraints, coupled with concerns relating to an increased incidence and severity of COVID-19 among patients with cancer, should lead to re-consideration of the risk-benefit balance for standard treatment pathways. This is of particular importance to pancreatic cancer, given that standard diagnostic modalities such as endoscopy may be restricted, and that disease biology precludes significant delays in treatment. In light of this, we sought consensus from UK clinicians with an interest in pancreatic cancer for management approaches that would minimise patient risk and accommodate for healthcare service restrictions. The outcomes are described here and include recommendations for treatment prioritisation, strategies to bridge to later surgical resection in resectable disease and factors that modify the risk-benefit balance for treatment in the resectable through to the metastatic settings. Priority is given to strategies that limit hospital visits, including through the use of hypofractionated precision radiotherapy and chemoradiotherapy treatment approaches
Restructuring ENT out-patient services during the coronavirus disease 2019 pandemic - an iterative approach.
No full textBACKGROUND
Coronavirus disease 2019 has demanded enormous adjustments to National Health Service provisions. Non-urgent out-patient work was initially postponed or performed virtually, but is now being re-established. In ENT surgery, aerosol-generating procedures pose a particular challenge in out-patient settings.
OBJECTIVE
A rapid restructuring of ENT out-patient services is required, to safely accommodate aerosol-generating procedures and increase in-person attendances, whilst coronavirus disease 2019 persists.
METHODS
Data were collected prospectively over four consecutive cycles. Two surveys were conducted. Results were analysed and disseminated, with recommendations for service restructuring implemented at cycle end-points.
RESULTS
Out-patient activity increased four-fold, associated with a significant rise in aerosol-generating procedures during the study period. Mean aerosol-generating procedure duration dropped weekly, implying a learning curve. Service restructuring occurred at cycle end-points.
CONCLUSION
Iterative data gathering, results analysis and outcome dissemination enabled a swift, data-driven approach to the restructuring of ENT out-patient services. Patient and staff safety was ensured, whilst out-patient capacity was optimised