Notification and support for people exposed to the risk of Creutzfeldt-Jakob disease (CJD) (or other prion diseases) through medical treatment (iatrogenically)

Ryan, Rebecca; Hill, Sophie; Lowe, Dianne; Allen, Kelly; Taylor, Michael J.; Mead, Cathy

doi:10.1002/14651858.cd007578.pub2

Cited by 11 publications

(18 citation statements)

References 198 publications

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“…Clinical discussion of CJD often refers to three main types; sporadic or classical CJD being the most common form, accounting for about 80-90% of all cases (Rentz 2008, Ryan et al 2011. What triggers sporadic CJD is unknown, but it is not thought to be inherited or otherwise transmitted interpersonally.…”

Section: Creutzfeldt-jakob Disease (Cjd): Defining the Conditionmentioning

confidence: 99%

“…As the UK Alzheimer's Society (2015) notes, CJD is one of the rarer causes of dementia and there is increasing interest in responding to the different forms of dementia and not seeing its experiences as being homogeneous. Overall, within wider health services, a recent Cochrane Review on the notification and support for people exposed to the risk of CJD commissioned in Australia (Ryan et al 2011) noted that:…”

Section: Introductionmentioning

confidence: 99%

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The Role of Social Work in Supporting People Affected by Creutzfeldt–Jakob Disease (CJD): A Scoping Review

Manthorpe

Simcock

2018

The British Journal of Social Work

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Social work practice in England and the wider United Kingdom is curiously under-informed about its own practice in supporting people affected by Creutzfeldt-Jakob Disease (CJD). This paper reports the findings of a scoping review undertaken in 2018 of what is known about social work support for people with CJD and their families. Conceptual and thematic analysis of the limited literature identified in the review enabled us to develop a consensus on reported themes: rapid decline and the need for quick responses; families' need for support; and the use of case studies and case reports. The review identified significant gaps in the evidence, particularly as the literature currently published pre-dates the contemporary legal framework for social work practice in England. We therefore argue that there is clear scope for further research, investigating the specific social work role in supporting people affected by CJD, potentially providing the profession with greater confidence about its potential contribution, and evidence of its potential and actual effectiveness.

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Section: Creutzfeldt-jakob Disease (Cjd): Defining the Conditionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The Role of Social Work in Supporting People Affected by Creutzfeldt–Jakob Disease (CJD): A Scoping Review

Manthorpe

Simcock

2018

The British Journal of Social Work

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“…There are also a number of ongoing reviews registered through the Campbell, and Cochrane Collaborations also adopt a similar approach, including a review on interventions to prevent female genital mutilation and a review of the impact of farmer field schools in low-and middle-income countries (Denison et al 2011, Leiknes et al 2011, Lins et al 2011, Ryan et al 2011, Waddington et al 2011. Within the area of international development an ongoing review of the evidence on the impact of farmer field schools in lowand middle-income countries (Waddington et al 2011) aims to assess the barriers and facilitators of intervention effectiveness and sustainability by including a broader range of evidence in a second review component.…”

Section: Effectiveness Plus With Parallel Review Modulesmentioning

confidence: 99%

Systematic reviews: from ‘bare bones’ reviews to policy relevance

Snilstveit

2012

Journal of Development Effectiveness

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Systematic reviews: from 'bare bones' reviews to policy relevance Birte SnilstveitTo cite this article: Birte Snilstveit (2012) Systematic reviews: from 'bare bones' reviews to policy relevance, Journal of Development Effectiveness, 4:3, 388-408, DOI: 10.1080/19439342.2012 Theory-based systematic reviews, which summarise evidence on what works, when and why, strive for greater policy relevance. Reviews that answer these questions adopt a mixed methods approach and draw on a range of study types. Answering the 'what works' and 'what doesn't' questions means drawing on effectiveness studies, conducted to standards of high-quality impact evaluation. But in formulating answers to the 'when' and 'why' questions requires a broader range of evidence from both quantitative and qualitative research. Based on a review of the methodological literature in this field and the experience of 3ie's systematic reviews program, this article provides an outline of how a theory-based approach to systematic reviews, including appropriate quantitative and qualitative evidence, can be operationalised. We propose an approach based on three principles: (1) develop a program theory for the intervention; (2) adopt a mixed methods approach and include a broader range of evidence; and (3) maintain the rigour and transparency that characterise systematic reviews. The approach translates into two broad options. Effectiveness plus reviews focus on providing a detailed causal chain analysis by drawing on a program theory and additional data collection on context and intervention implementation. And effectiveness plus with a parallel review component, which is designed to answer specific research questions related to effectiveness, adopts separate inclusion criteria, reflecting the type of studies appropriate for answering those questions.

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“…A Cochrane review by Ryan et al (Ryan, Hill et al 2011) discusses the ethical implications of post-prion exposure notification, especially in light of the fact that this disease cannot currently be screened for. Using previous studies on communicating bad news to cancer patients, as well as to individuals infected with HIV or Hepatitis C, they conclude that “the balance between precautionary public health priorities, the individual's rights, and the potential harms of notification of CJD or vCJD risk exposure […] remain contentious” (Ryan, Hill et al 2011). They noted that uncertainty of acquired risk for possible future disease in many forms of CJD would be a reason for non-disclosure, but that there is a trend toward more openness with patients and families about facts surrounding potential adverse events.…”

Section: 0 Ethical Issues In Prion Diseasementioning

confidence: 99%

Ethics in prion disease

Bechtel

Geschwind

2013

Progress in Neurobiology

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This paper is intended to discuss some of the scientific and ethical issues that are created by increased research efforts towards earlier diagnosis, as well as to treatment of, human prion diseases (and related dementias), including the resulting consequences for individuals, their families, and society. Most patients with prion disease currently are diagnosed when they are about 2/3 of the way through their disease course (Geschwind, Kuo et al. 2010; Paterson, Torres-Chae et al. 2012), when the disease has progressed so far that even treatments that stop the disease process would probably have little benefit. Although there are currently no treatments available for prion diseases, we and others have realized that we must diagnose patients earlier and with greater accuracy so that future treatments have hope of success. As approximately 15% of prion diseases have a autosomal dominant genetic etiology, this further adds to the complexity of ethical issues, particularly regarding when to conduct genetic testing, release of genetic results, and when or if to implement experimental therapies. Human prion diseases are both infectious and transmissible; great care is required to balance the needs of the family and individual with both public health needs and strained hospital budgets. It is essential to proactively examine and address the ethical issues involved, as well as to define and in turn provide best standards of care.

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Notification and support for people exposed to the risk of Creutzfeldt-Jakob disease (CJD) (or other prion diseases) through medical treatment (iatrogenically)

Cited by 11 publications

References 198 publications

The Role of Social Work in Supporting People Affected by Creutzfeldt–Jakob Disease (CJD): A Scoping Review

The Role of Social Work in Supporting People Affected by Creutzfeldt–Jakob Disease (CJD): A Scoping Review

Systematic reviews: from ‘bare bones’ reviews to policy relevance

Ethics in prion disease

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