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  1. Article ; Online: COVID ‐19

    Chaplin, Steve

    Prescriber

    a brief history and treatments in development

    2020  Volume 31, Issue 5, Page(s) 23–28

    Keywords covid19
    Language English
    Publisher Wiley
    Publishing country us
    Document type Article ; Online
    ZDB-ID 2322584-1
    ISSN 1931-2253 ; 0959-6682
    ISSN (online) 1931-2253
    ISSN 0959-6682
    DOI 10.1002/psb.1843
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  2. Article ; Online: Remdesivir

    Chaplin, Steve

    Prescriber

    an antiviral for the treatment of COVID ‐19

    2020  Volume 31, Issue 7-8, Page(s) 31–33

    Keywords covid19
    Language English
    Publisher Wiley
    Publishing country us
    Document type Article ; Online
    ZDB-ID 2322584-1
    ISSN 1931-2253 ; 0959-6682
    ISSN (online) 1931-2253
    ISSN 0959-6682
    DOI 10.1002/psb.1859
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  3. Article: Remdesivir: an antiviral for the treatment of COVID-19

    Chaplin, Steve

    Prescriber

    Abstract: The antiviral remdesivir (Veklury) is the first drug to be licensed for the treatment of COVID-19. This article discusses its mode of action, indications, clinical trial efficacy and side-effects. ...

    Abstract The antiviral remdesivir (Veklury) is the first drug to be licensed for the treatment of COVID-19. This article discusses its mode of action, indications, clinical trial efficacy and side-effects.
    Keywords covid19
    Publisher WHO
    Document type Article
    Note WHO #Covidence: #743700
    Database COVID19

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  4. Article: COVID-19: a brief history and treatments in development

    Chaplin, Steve

    Prescriber

    Abstract: Coronavirus disease (COVID-19) is now dominating the lives of everyone, and its history is constantly being rewritten. This article gives a brief account of the story so far: where SARS-CoV-2 might have originated, how it compares with other viruses that ...

    Abstract Coronavirus disease (COVID-19) is now dominating the lives of everyone, and its history is constantly being rewritten. This article gives a brief account of the story so far: where SARS-CoV-2 might have originated, how it compares with other viruses that cause major respiratory disease, and some of the treatments and vaccines currently being investigated to combat it.
    Keywords covid19
    Publisher WHO
    Document type Article
    Note WHO #Covidence: #327274
    Database COVID19

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  5. Article ; Online: The lived experience of women with a bleeding disorder: A systematic review.

    Sanigorska, Anna / Chaplin, Steve / Holland, Mike / Khair, Kate / Pollard, Debra

    Research and practice in thrombosis and haemostasis

    2022  Volume 6, Issue 1, Page(s) e12652

    Abstract: Background: Research studies have described the morbidity associated with inherited bleeding disorders such as hemophilia and von Willebrand disease in women, but their effect on daily living has long been underrecognized. This systematic review sought ... ...

    Abstract Background: Research studies have described the morbidity associated with inherited bleeding disorders such as hemophilia and von Willebrand disease in women, but their effect on daily living has long been underrecognized. This systematic review sought to document the lived experience of women with a bleeding disorder by assessing research findings on quality of health care, socioeconomic factors, and mental health.
    Methods: A systematic search was carried out in Web of Science, the Cumulative Index to Nursing and Allied Health Literature, and PubMed on July 31, 2020. References were hand searched. Abstracts of the 2019 and 2020 congresses on bleeding disorders were hand searched. Key journals were screened for relevant studies published after the search date until the analysis was completed on December 7, 2020.
    Results: Of 635 potentially eligible publications, 27 published since 1998 were selected for review. Most studies were of moderate to high quality but meta-analysis of quantitative studies was not possible due to difference in outcomes and assessment.Women with a bleeding disorder experience obstacles to accessing care, difficulties living with their disorder, interference with schooling and work, and poor mental health. Diagnostic delay and lack of recognition of symptoms mean treatment and support may not be available. Where comparisons with controls were made, women's negative experiences were greater than those of men.
    Conclusions: Women with bleeding disorders experience major negative impacts of their disorders on daily life and mental well-being. Many of the challenges identified in earlier research are evident in more recent studies.
    Language English
    Publishing date 2022-02-03
    Publishing country United States
    Document type Journal Article ; Review
    ISSN 2475-0379
    ISSN (online) 2475-0379
    DOI 10.1002/rth2.12652
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: The views of women with bleeding disorders: Results from the Cinderella study.

    Khair, Kate / Pollard, Debra / Steadman, Lisa / Jenner, Kathryn / Chaplin, Steve

    Haemophilia : the official journal of the World Federation of Hemophilia

    2022  Volume 28, Issue 2, Page(s) 316–325

    Abstract: Introduction: Despite therapeutic advances in bleeding disorder treatment, over the past 20 years women with bleeding disorders have reported delayed diagnosis, impaired quality of life, dismissive attitudes from health professionals and inappropriate ... ...

    Abstract Introduction: Despite therapeutic advances in bleeding disorder treatment, over the past 20 years women with bleeding disorders have reported delayed diagnosis, impaired quality of life, dismissive attitudes from health professionals and inappropriate care.
    Aim: To explore the lived experience of women with a diagnosed bleeding disorder and to improve understanding of their unmet needs.
    Methods: Women haemophilia carriers (WHC), women with a diagnosed bleeding disorder (WBD) and women with immune thrombocytopenia (WITP) were invited to complete an online survey. Those who indicated a willingness to be interviewed took part in a focus group or one-to-one interview to further explore their lived experiences.
    Results: Two hundred and eighty women completed the survey (126 WHC, 96 WBD, 58 WITP) 13 women (seven WHC, three WBD, three WITP) participated in a focus group (11) or individual interview (2). The most frequently reported symptoms were heavy periods (81%) and bruising (81%). Compared to the group as a whole, more WBD took time off work or school due to symptoms, had discussed symptoms with a healthcare professional (HCP), and had seen a nurse or gynaecologist. WHC were least likely to be screened for a bleeding disorder or seen in a specialist setting. Themes discussed included difficulty obtaining a diagnosis, lack of awareness amongst and poor communication from HCPs, stress and anxiety, coping strategies and sources of support.
    Conclusion: Many of the experiences described by women with bleeding disorders 20 years ago remain prevalent. Healthcare provision needs to change to offer them better treatment and support.
    MeSH term(s) Female ; Gynecology ; Hemophilia A/complications ; Hemophilia A/diagnosis ; Hemophilia A/epidemiology ; Humans ; Menorrhagia/diagnosis ; Quality of Life ; Surveys and Questionnaires
    Language English
    Publishing date 2022-02-13
    Publishing country England
    Document type Journal Article
    ZDB-ID 1229713-6
    ISSN 1365-2516 ; 1351-8216 ; 1355-0691
    ISSN (online) 1365-2516
    ISSN 1351-8216 ; 1355-0691
    DOI 10.1111/hae.14514
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: An exploration of why men with severe haemophilia might not want gene therapy: The exigency study.

    Fletcher, Simon / Jenner, Kathryn / Holland, Michael / Chaplin, Steve / Khair, Kate

    Haemophilia : the official journal of the World Federation of Hemophilia

    2021  Volume 27, Issue 5, Page(s) 760–768

    Abstract: Introduction: For many people with haemophilia (PwH) gene therapy offers a potential functional cure. However, some have stated that they do not wish to have gene therapy either now or in the future.: Aim: This sub-study, part of the larger Exigency ... ...

    Abstract Introduction: For many people with haemophilia (PwH) gene therapy offers a potential functional cure. However, some have stated that they do not wish to have gene therapy either now or in the future.
    Aim: This sub-study, part of the larger Exigency programme, assesses the attitudes, views and understanding of those who do not wish to undergo gene therapy.
    Methods: Participants were approached via social media and word of mouth referral and invited to participate in a focus group or individual interview to discuss their views. Interviews were recorded, transcribed verbatim and analysed thematically.
    Results: Ten adult men with severe haemophilia (eight haemophilia A and two haemophilia B), mean age 34.3 years, participated in a 1-h focus group (n = 9) or interview (n = 1). All were on prophylaxis. None reported significant treatment burden, and all had annual bleeding rates of less than five in the previous 12 months. Four major themes emerged: self-identity and its loss, lack of long-term safety and efficacy data, ongoing concerns about past viral infection, and lack of current treatment burden.
    Conclusion: There are many concerns about gene therapy, including eligibility, effectiveness and safety, which may result in individuals declining it as a therapy. These concerns may recede as more data are published. This study reveals a psychological dynamic around self-identity and belonging for PwH. The nature of this dynamic is poorly understood and needs exploration to facilitate support for those making decisions about gene therapy.
    MeSH term(s) Adult ; Decision Making ; Genetic Therapy ; Hemophilia A/genetics ; Hemophilia A/therapy ; Hemophilia B/genetics ; Hemophilia B/therapy ; Hemorrhage ; Humans ; Male
    Language English
    Publishing date 2021-07-15
    Publishing country England
    Document type Journal Article
    ZDB-ID 1229713-6
    ISSN 1365-2516 ; 1351-8216 ; 1355-0691
    ISSN (online) 1365-2516
    ISSN 1351-8216 ; 1355-0691
    DOI 10.1111/hae.14378
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Parental perspectives on gene therapy for children with haemophilia: The Exigency study.

    Khair, Kate / Steadman, Lisa / Chaplin, Steve / Holland, Michael / Jenner, Kathryn / Fletcher, Simon

    Haemophilia : the official journal of the World Federation of Hemophilia

    2020  Volume 27, Issue 1, Page(s) 120–128

    Abstract: Introduction: Gene therapy is used in life-limiting conditions of childhood. While not a current therapeutic option for children with haemophilia, it may be considered in the future especially for those where access to treatment is limited.: Aim: To ... ...

    Abstract Introduction: Gene therapy is used in life-limiting conditions of childhood. While not a current therapeutic option for children with haemophilia, it may be considered in the future especially for those where access to treatment is limited.
    Aim: To assess the attitudes and opinions of parents of children with haemophilia about gene therapy as a potential future treatment, by understanding their awareness about gene therapy and what they need to know now and in the future; gauging levels of interest in gene therapy for their children; and exploring perceived current motivations and barriers.
    Methods: A mixed methods study with an online questionnaire and in-depth qualitative interviews in focus groups which were analysed using thematic analysis.
    Results: One hundred and fifty-eight participants commenced the online survey; 63 were fully completed (39%). 60 had heard of gene therapy but few (17/60 [28.3%]) felt they had a good understanding. 38/60 (63.3%) respondents did not know that gene therapy is not available for children. However, most held positive views: 53/60 (88.3%) saying they would consider it for their child. In the interviews, participants (N = 10, all mothers) discussed their awareness and understanding of gene therapy and opinions about it for children, including how this should be communicated to the child and parents.
    Conclusion: A coherent, community-wide strategy for communicating information and news about gene therapy should now be provided for children and families living with haemophilia. This should come primarily from trusted haemophilia nursing teams, who can give tailored, age-appropriate, factual advice.
    MeSH term(s) Child ; Female ; Genetic Therapy ; Hemophilia A/genetics ; Hemophilia A/therapy ; Humans ; Mothers ; Parents ; Surveys and Questionnaires
    Language English
    Publishing date 2020-11-20
    Publishing country England
    Document type Journal Article
    ZDB-ID 1229713-6
    ISSN 1365-2516 ; 1351-8216 ; 1355-0691
    ISSN (online) 1365-2516
    ISSN 1351-8216 ; 1355-0691
    DOI 10.1111/hae.14188
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: The use of an implementation science theoretical framework to inform the development of a region wide Positive Behavioural Support Workforce Development approach.

    McKenzie, Karen / McNall, Anne / Noone, Steve / Branch, Alison / Murray, George / Sherring, Melissa / Jones, Lynne / Thompson, Judith / Chaplin, Jill

    Journal of applied research in intellectual disabilities : JARID

    2020  Volume 34, Issue 3, Page(s) 675–683

    Abstract: Background: Concern about the poor care of some people with an intellectual disability has highlighted the need for systemic, large-scale interventions to develop a skilled workforce.: Method: We outline how an implementation science theoretical ... ...

    Abstract Background: Concern about the poor care of some people with an intellectual disability has highlighted the need for systemic, large-scale interventions to develop a skilled workforce.
    Method: We outline how an implementation science theoretical model informed the development of a region-wide Positive Behavioural Support (PBS) Workforce Development (WFD) approach.
    Results: We provide an example of the application of the model in practice and demonstrate how this enabled us to understand the competencies and development needs of the workforce; engage effectively with stakeholders; and develop, deliver and evaluate a PBS WFD model.
    Conclusion: The application of the model helped us to identify, prioritise, and address the multiple and complex factors that were relevant to the implementation of the PBS WFD approach.
    MeSH term(s) Humans ; Implementation Science ; Intellectual Disability ; Staff Development ; Workforce
    Language English
    Publishing date 2020-12-06
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 1326222-1
    ISSN 1468-3148 ; 0952-9608 ; 1360-2322
    ISSN (online) 1468-3148
    ISSN 0952-9608 ; 1360-2322
    DOI 10.1111/jar.12847
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Disease burden and remaining unmet need in patients with haemophilia A treated with primary prophylaxis.

    O'Hara, Sonia / Castro, Felipe A / Black, James / Chaplin, Steve / Ruiz, Leonardo / Hampton, Roger J / Sima, Camelia S / O'Hara, Jamie

    Haemophilia : the official journal of the World Federation of Hemophilia

    2020  Volume 27, Issue 1, Page(s) 113–119

    Abstract: Aims: There is evidence that people with haemophilia A still experience morbidity and functional limitation due to joint damage despite prophylaxis. This study aimed to compare their quality of life and work-related function with that of the general ... ...

    Abstract Aims: There is evidence that people with haemophilia A still experience morbidity and functional limitation due to joint damage despite prophylaxis. This study aimed to compare their quality of life and work-related function with that of the general population and patients with osteoarthritis.
    Methods: Data from the Cost of Haemophilia in Europe: a Socioeconomic Survey (CHESS) database were compared with published data from normative populations and patients with osteoarthritis in Europe and the United States.
    Results: In the predominantly young (age 18-35 years) adult CHESS population treated with primary prophylaxis, about 30% reported a target joint; the average frequency of bleeds was one per year; half reported chronic pain. Levels of anxiety and depression were similar to those reported by people using on-demand treatment. Employment and productivity were lower than in the general population. The level of presenteeism (attending work with impairment) was comparable with that reported for a much older population with osteoarthritis who had more extensive joint damage and greater prevalence of pain.
    Conclusion: Compared with the general population, clinical outcomes and quality of life are indicated to be impaired for young adults whose haemophilia is managed by primary prophylaxis. Primary prophylaxis is not associated with lower levels of anxiety and depression than on-demand treatment, and pain is common. The level of presenteeism is comparable to that reported in people with osteoarthritis, an older population with more joint disease. Further studies are needed to fully assess the implications of compromised work performance among young adults with haemophilia as they seek to build a career.
    MeSH term(s) Adolescent ; Adult ; Cost of Illness ; Factor VIII ; Hemophilia A/complications ; Hemophilia A/drug therapy ; Hemorrhage ; Humans ; Quality of Life ; Surveys and Questionnaires ; Young Adult
    Chemical Substances Factor VIII (9001-27-8)
    Language English
    Publishing date 2020-10-20
    Publishing country England
    Document type Journal Article
    ZDB-ID 1229713-6
    ISSN 1365-2516 ; 1351-8216 ; 1355-0691
    ISSN (online) 1365-2516
    ISSN 1351-8216 ; 1355-0691
    DOI 10.1111/hae.14171
    Database MEDical Literature Analysis and Retrieval System OnLINE

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