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Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.

ABSTRACT: Objective: By definition a rare disease affects fewer than 1 in 2,000 people but collectively 1 in 17 people are affected at some time in their lives. Rare disease patients often describe feeling isolated and unsupported. The needs of individuals living with rare disease(s) are not well met globally and have not been specifically explored in Northern Ireland. Methods: An online survey was conducted in spring of 2017, focused on information and communication needs, to identify overarching themes. Databases were searched to place responses in an international context. Results: There were 240 survey respondents with four overarching themes identified: sources of information; medical care; rare disease community; and public awareness. Thirty relevant papers resulted from the literature search. A coordinated and transparent approach for improved medical care is needed where researchers, practitioners, and policy makers work with patients, carers, and rare disease advocates to ensure a fully considered rare disease strategy is implemented. In line with that developed by many other countries, a physical or virtual Northern Ireland reference network or center of excellence for rare diseases would provide an important strategic link. Sustainable funding, resources for rare disease charities, and more cross-border working would help build a local rare disease community. Major challenges highlighted include finding the right health and social care information. The internet was the most regularly accessed, and perceived as the easiest way, to source information on rare disease. Improved signposting to accredited information, ideally by the creation of a locally relevant online information hub, a local rare disease registry that can integrate with international systems, a local rare disease coordinator, and improving public awareness are urgent needs. Conclusions: Aligned to internationally reported outcomes, practical issues for future development based on the voices of individuals living, and working with a rare condition are described. It is essential that ongoing research evaluates changes to ensure that the best possible structures and mechanisms are put in place to improve communication and information systems for those affected by a rare condition(s).

SUBMITTER: Crowe AL

PROVIDER: S-EPMC6712370 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.

Crowe Ashleen L AL McKnight Amy Jayne AJ McAneney Helen H

Frontiers in public health 20190821

<b>Objective:</b> By definition a rare disease affects fewer than 1 in 2,000 people but collectively 1 in 17 people are affected at some time in their lives. Rare disease patients often describe feeling isolated and unsupported. The needs of individuals living with rare disease(s) are not well met globally and have not been specifically explored in Northern Ireland. <b>Methods:</b> An online survey was conducted in spring of 2017, focused on information and communication needs, to identify overa ...[more]

PMID: 31497589

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Project description:A rare disease is generally defined as a condition which affects about 1 among 2000 people and currently, there are approximately 5000-8000 rare diseases (RDs) affecting over 400 million people world-wide. Although RDs may arise from different causes such as infections and environmental factors, about 80% are caused by genetic abnormalities. In Tanzania, there are no reports of the types of RDs, their incidence, distribution and numbers of individuals affected. In addition, there have been no strategies to map RDs in the country and develop a definition that fits the local context. Public awareness and understanding of RDs are very limited, and these lead to poor management and stigmatisation of patients. To address the ongoing problems, Tanzania joined other countries world-wide and global partners to commemorate the rare diseases day (RDD) for the first time in 2016 and subsequently every year. Unlike previous years where the RDD was organised by Ali Kimara Rare Diseases Foundation (AKRDF) with few partners, in 2020, a bigger event was co-hosted by Ali AKRDF and Tanzania Human Genetics Organization together with government representatives and other multiple partners. The organisers, government representatives and participants proposed a national "Call for Action" with the overall goal of improving the lives of patients/individuals with RDs. The call focuses and aims to address 17 strategic issues that are broadly categorised into four areas. These include generating demographic data of individuals with RDs; advocating for policies and guidelines for diagnosis, care, treatment and health financing; developing policies supporting public education, awareness and advocacy; and strengthening research, innovation and public-private partnerships. If adopted and implemented, the potential impacts of these recommendations will include improved access to adequate and high-quality health and education services, and policies and guidelines to address the current and future challenges facing individuals with RDs and their families.

Project description:The disease control programmes for Bovine Viral Diarrhoea (BVD), Infectious Bovine Rhinotracheitis (IBR), Johne's Disease (JD), Leptospirosis and Neosporosis are described including the approved diagnostic tools, diagnostic quality systems, and the role of vaccination (where appropriate). This paper describes the control programmes within NI, the challenges relating them, as well as assessing their impact and effectiveness, taking into consideration the quality of data available and number of herds participating. With the NI agricultural industry experiencing increasing financial pressures and post Brexit changes, the necessity of working to maximise the performance of bovine disease control programmes at the individual farm level as well as at the regional level is increasingly important. The programmes described fall into two categories with two distinct aims. Two managed by Animal Health & Welfare NI (AHWNI), the BVD eradication and JD Dairy Control programmes seek to eradicate or control infection at the regional level. A further 5 programmes, covering BVD, JD, IBR, Leptospirosis and Neosporosis, are managed by the Agri-Food and Biosciences Institute (AFBI) and focus on facilitating eradication or control at the individual herd level. These latter programmes conform to the Cattle Health Certification Standards (UK) (CHeCS) which is a UK self-regulatory body set up to ensure consistency between different disease control schemes across herds. The largest of all the programmes described is the AHWNI BVD Eradication Programme which has led to significant reductions in infection incidence. Compliance with it has been high with more than 97% of all cattle alive at the end of 2020 having a BVD test status. The rolling annual incidence of BVD virus positive calves has fallen by 56% since the start of the compulsory programme in 2016. This decrease has occurred largely through industry initiatives to deal with BVD positives, including the voluntary culling of persistently infected (PI) animals by herd owners, a voluntary abattoir ban on the slaughter of BVD virus (BVDv) positive animals, and the inclusion of retention of a BVDv positive animal as a non-conformance in the industry-run Farm Quality Assurance Scheme.

Project description:BackgroundMany people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018-2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI).MethodsThis study had 2 stages. Stage 1 was an online survey and stage 2 involved semi-structured interviews both with rare disease collaborative groups in Northern Ireland. The surveys and interviews were used to locate existing resources as well as identify gaps where the development of further resources would be appropriate.ResultsNinety-nine rare disease collaborative groups engaged with the survey with 31 providing detailed answers. Resources such as information, communication, 'registries', online services, training and improvements to support services were queried. Excellent communication is an important factor in delivering good rare disease support. Training for health professionals was also highlighted as an essential element of improving support for those with a rare disease to ensure they approach people with these unique and challenging diseases in an appropriate way. Carers were mentioned several times throughout the study; it is often felt they are overlooked in rare disease research and more support should be in place for them. Current care/support for those with a rare disease was highlighted as inadequate. Nine semi-structured interviews were conducted with rare disease collaborative groups. Reoccurring themes included a need for more effective information and communication, training for health professionals, online presence, support for carers, and involvement in research.ConclusionsAll rare disease collaborative groups agreed that current services for people living and working with a rare disease are not adequate. An important finding to consider in future research within the rare disease field is the inclusion of carers perceptions and experiences in studies. This research provides insight into the support available for rare diseases across Northern Ireland, highlights unmet needs, and suggests approaches to improve rare disease support.

Dataset Information

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.

Publications

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.

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