A national audit of oral propranolol for the treatment of Infantile Hemangiomas

Author(s):  
C. Cotter ◽  
L. Solman ◽  
C. Flohr
2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1288.1-1289
Author(s):  
I. Mcnicol ◽  
A. Bosworth ◽  
C. Jacklin ◽  
J. Galloway

Background:NRAS follows best practice, evidence-based standards in all we do. Whilst huge strides have been made in the diagnosis and treatment of RA, the impact on quality of life can be significant and for many this disease remains hard to come to terms with. NRAS services and resources can improve the outcomes of people with RA/Adult JIA through a framework of supported self-management resources tailored to individual need. It is particularly important to provide the right support at the beginning of a person’s journey with RA, when unhelpful health beliefs, anxiety and incorrect information can influence how someone responds to prescribed medication and treatment thus impeding their ability to achieve the best outcomes. We know, for example, that many people do not take their medication as prescribed which reduces their chances of achieving remission or low disease activity state.Objectives:To demonstrate that by referring patients online as part of a quality improvement programme to NRAS Right Start Service, we can show improved outcomes for patients with early RA when measured by the MSKHQ. Referred patients will benefit by: a) Better understanding what RA is; b) knowing how it can affect them; c) getting the right support; d) feeling more in control; receiving a tailored pack of information that meets their personal needs; e) be able to talk to a like-minded person who has lived with RA. It’s a 4 step process which starts with the health professional referring their patient to NRAS on line. NICE Quality Standard 3 states that “Adults with rheumatoid arthritis are given opportunities throughout the course of their disease to take part in educational activities that support self-management.” Our service enables health professionals to meet their responsibilities against this national quality standard.Methods:In preparation for the introduction of this service at BSR congress 2019, an audit of the NRAS helpline service was undertaken at the end of 2018 and remains on going. Currently we have 224 responses which have been analysed against specific criteria. An Advisory Board comprising 7 clincians, from different hospitals was appointed to work with NRAS on this important research.Results:In the helpline audit, when asked ‘how concerned are you about your disease’?, alarmingly, 78% of those surveyed scored their level of concern about their disease at 7 or higher out of 10, while only 8% scored it at 5 or below. When asked about the emotional effects of their RA, 62% scored it as 7 or more where 10 was the worst possible impact. 94% of survey respondents said that they would definitely or very likely recommend NRAS and its services to another person. These results led to the development of New2RA Right Start launched in 2019, whereby health professionals across the UK can refer their patients directly to NRAS via a consented online referral which is fully GDPR compliant. To date (31stJan, 2020), we have made calls to 101 patients, from 24 referring hospitals of which 55 have been successfully completed, 34 have had information sent through the post although our helpline team were unable to speak to them, and 12 remain open. Data analysis on the service is being carried out by King’s College Hospital London, comparing the results of patients who have been referred to Right Start within the national audit who have completed a baseline and 3 month follow up MSKHQ and patients in the audit who have not participated in Right Start.Conclusion:Anecdotally, we have had a tremendous response to this service from both patients and referring health professionals. We await data from King’s on the above figures, which we will have within the next 2 months and further data, should this abstract be accepted, will be available prior to June 2020. Right Start enables health professionals to comply with QS3 above, of the NICE Quality Standards in RA, one of the key standards against which they are being audited in the NEIAA national audit. Once data and write up in a peer review journal has been published we plan to roll this service out to people with more established disease.References:[1]To be done, not included in word count.Acknowledgments:I would like to thank Ailsa Bosworth MBE, Clare Jacklin, and James GallowayDisclosure of Interests:Iain McNicol Shareholder of: GSK, Ailsa Bosworth Speakers bureau: a number of pharmaceutical companies for reasons of inhouse training, advisory boards etc., Clare Jacklin Grant/research support from: NRAS has received grants from pharmaceutical companies to carry out a number of projects, Consultant of: I have been paid a speakers fee to participate in advisory boards, in house training of staff and health professional training opportunities, Speakers bureau: Various pharma companies, James Galloway: None declared


Author(s):  
Prasetyanugraheni Kreshanti ◽  
Nandya Titania Putri ◽  
Valencia Jane Martin ◽  
Chaula Luthfia Sukasah

2021 ◽  
Author(s):  
Karen Lindsay ◽  
Ignatius Chua ◽  
Anthony Jordan ◽  
Simone Stephens

2021 ◽  
pp. 451-456
Author(s):  
Karen De Loecker ◽  
Veerle Labarque ◽  
Hilde Seynaeve ◽  
Ingele Casteels

Blue rubber bleb nevus syndrome (BRBNS) is a rare syndrome characterized by venous malformations of mostly skin and gastrointestinal tract. Patients present with multiple venous malformations in various organs including liver, spleen, heart, eye, and central nervous system. Few ophthalmological cases have been published in literature and at present, there are no clear guidelines on the treatment of eye hemorrhages associated with the BRBNS. We report a 3-year-old boy with the BRBNS who developed a spontaneous progressive enlarging subconjunctival hemorrhage in the left eye despite being treated with oral propranolol. The subconjunctival hemorrhage was caused by an underlying conjunctival vascular malformation. With topical treatment with timolol maleate 0.5% once a day in the affected eye, the lesion regressed completely after 4 months. This child represents the first case of the BRBNS associated with a subconjunctival progressive bleeding necessitating topical treatment despite oral propranolol effectively controlling the cutaneous lesions. We recommend ophthalmic screening of patients with BRBNS in early childhood. For patients with BRBNS-related subconjunctival vascular lesions with subsequent hemorrhage, treatment with a topical β-blocker may be an efficient and harmless treatment option.


Author(s):  
Tara Purvis ◽  
Isobel J Hubbard ◽  
Dominique A Cadilhac ◽  
Kelvin Hill ◽  
Justine Watkins ◽  
...  

2019 ◽  
Vol 14 (1) ◽  
Author(s):  
Tara Purvis ◽  
Sandy Middleton ◽  
Louise E. Craig ◽  
Monique F. Kilkenny ◽  
Simeon Dale ◽  
...  

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