Health Services and Delivery ResearchISSN 2050-4349 (Print) ISSN 2050-4357 (Online) This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: journals.library@nihr.ac.ukThe full HS&DR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Services and Delivery Research journalReports are published in Health Services and Delivery Research (HS&DR) if (1) they have resulted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. HS&DR programmeThe Health Services and Delivery Research (HS&DR) programme, part of the National Institute for Health Research (NIHR), was established to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which were merged in January 2012.The HS&DR programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services including costs and outcomes, as well as research on implementation. The programme will enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evaluative research to improve health services.For more information about the HS&DR programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hsdr This reportThe research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 12/209/51. The contractual start date was in May 2014. The final report began editorial review in August 2016 and was accepted for publication in April 2017. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Departm...
Priapism is defined as prolonged and painful penile erection that does not subside on orgasm. It is considered to be a urological emergency. However, patients do not always seek prompt medical help. The incidence of priapism is increased by sickle cell disease, where it is a complication of the characteristic sickling of the red blood cells. Little is known about the psychological or social implications of this complication or the strategies that sickle cell patients use to manage it. A qualitative study was carried out in order to investigate these topics. Semi-structured interviews were carried out with adult male patients of the Sickle Cell and Thalassaemia Centre in Birmingham in the UK who experienced priapism. These were subsequently analysed using grounded theory. Ten themes were elicited: first occurrence of priapism, pain, precipitants, emotional consequences, self-management, experience of hospital, impact on work and social life, impact on sexual relationships, erectile dysfunction, and disclosure. The dominant experiences were ones of despair, embarrassment, and isolation. Participants described finding it difficult to disclose priapism, with the result that it was often unreported until late in its course. Attempts to manage priapism at home varied, with there being little consensus on their efficacy. The results are discussed with respect to the healthcare services that cater for these patients.
This article reviews data about transition from paediatric to adult services in patients with sickle cell disease, the most common inherited disease in the UK, and outlines how this has been addressed in a large UK sickle cell centre.
BackgroundYoung people living with long term conditions are vulnerable to health service disengagement. This endangers their long term health. Studies report requests for digital forms of communication – email, text, social media – with their health care team. Digital clinical communication is troublesome for the UK NHS.AimIn this article we aim to present the research protocol for evaluating the impacts and outcomes of digital clinical communications for young people living with long term conditions and provide critical analysis of their use, monitoring and evaluation by NHS providers (LYNC study: Long term conditions, Young people, Networked Communications).MethodsThe research involves: (a) patient and public involvement activities with 16–24 year olds with and without long term health conditions; (b) six literature reviews; (c) case studies – the main empirical part of the study – and (d) synthesis and a consensus meeting. Case studies use a mixed methods design. Interviews and non-participant observation of practitioners and patients communicating in up to 20 specialist clinical settings will be combined with data, aggregated at the case level (non-identifiable patient data) on a range of clinical outcomes meaningful within the case and across cases. We will describe the use of digital clinical communication from the perspective of patients, clinical staff, support staff and managers, interviewing up to 15 young people and 15 staff per case study. Outcome data includes emergency admissions, A&E attendance and DNA (did not attend) rates. Case studies will be analysed to understand impacts of digital clinical communication on patient health outcomes, health care costs and consumption, ethics and patient safety.
Specific complications of sickle cell disease (SCD) may emerge during adolescence, and education of patients and families is vital during transition from paediatric to adult health care. Adolescents with SCD have to adjust to the constraints of living with a lifelong chronic condition, and compliance with self-care and medical treatments can be problematic. This article explores potential opportunities for intervention, and examines how the role of the adolescent clinical nurse specialist is pivotal in supporting patients and families during this transition.
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