M270 Obtaining Information When You Have A Rare Disease - The Potential For Ipf Support Groups

Wibberley, Steven; Ochiai, Yukiko; Pitt, Rachael; Mathieson, N

doi:10.1136/thoraxjnl-2014-206260.451

Cited by 4 publications

(9 citation statements)

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“…(M55, 74 years, P)DiscussionDifferent sources for different needs Patients affected by a rare disease as well as their relatives use a variety of different sources to keep themselves informed. In accordance with previous quantitative studies, among others, especially the internet, patient associations as well as specialist doctors play an important role when gathering information[11][12][13][14]. However, to date, it has been unclear what experiences patients with a rare disease and their families have had when they have used these types of sources, how they assess them, and how their value changes over time.From our interviews, it was shown that initially after diagnosis, when the need for information is very high, only few patients obtained detailed and profound information from their doctors.…”

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confidence: 63%

“…However, still little is known about how people affected by a rare disease and their families search for information. Previous studies may be outdated, have relied on few single sources, focused on specific information needs only, and did not focus on rare diseases in general [10][11][12][13][14][15]. A recent study from Teixeira et al [13] on patients with a rare blood disorder shows that specialists are of particularly great importance when it comes to sources that were widely used for information gathering.…”

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confidence: 99%

“…However, it must be considered that this study occurred before the arrival of the internet, so that its relevance for today's conditions is limited. Wibberly et al [14] studied patients suffering from a rare lung disorder and identified various information sources. These include primary healthcare physicians, patient information leaflets, as well as the World Wide Web, nurse specialists, and patient support groups.…”

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confidence: 99%

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The Influence of different Sources on Disease-related Knowledge among Patients with Rare Diseases: A Qualitative Study

Litzkendorf

Frank

Babac

et al. 2019

Preprint

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Background: Finding reliable information on one of more than 7,000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources about rare diseases, still little is known about how users rate these sources and how their importance changes over time. Methods: Fifty-five patients with a variety of rare diseases and 13 close relatives participated in qualitative interviews. For these interviews, a semi-structured guideline was developed, piloted, and revised. Evaluation followed qualitative content analysis developed by Philipp Mayring. Results: The internet is the most important and widespread information source, especially for early information. Although patients have difficulty dealing with information obtained online, they consider online searching a quick and practical option to gather information. During the course of the disease, personal contact partners, especially self-help associations and specialized doctors, become more important. This is also because information provided online is sometimes insufficiently detailed to answer their information needs, which can be complemented by information from doctors and self-help. Conclusions: People rarely use just one type of source, but rather refer to different sources and informants. The source used depends on the type of information sought as well as other person-related factors such as preexisting knowledge and the disease stage. To improve people’s information searching and connect them with specialists in rare diseases, a central information portal on rare diseases is a suitable access point to provide free and quality assured information for patients, caregivers, and physicians. This would allow not only patients but also doctors to find quality assured information on symptoms and therapies as well as patient associations and specialized doctors.

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confidence: 63%

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confidence: 99%

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confidence: 99%

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The Influence of different Sources on Disease-related Knowledge among Patients with Rare Diseases: A Qualitative Study

Litzkendorf

Frank

Babac

et al. 2019

Preprint

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“…Especially for patients and their relatives, the latter are important contact partners that help them access specialized care or offer advice on all questions relating to their disease. For people affected by a rare disease, physicians can be another important source of information [ 8 - 12 ]. However, apart from those who deal with these conditions on a regular basis, for instance, physicians working in centers for rare diseases, general practitioners, as well as specialists in private practice often lack such information.…”

Section: Introductionmentioning

confidence: 99%

Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

Litzkendorf¹,

Hartz²,

Göbel³

et al. 2018

JMIR Res Protoc

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BackgroundRecently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted a national action plan for rare diseases, including the call to establish a central information portal on rare diseases (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE).ObjectiveThe objective of this study, therefore, was to conduct scientific research on how such a portal must be designed to meet the needs of patients, their families, and medical professionals, and to provide high-quality information for information seekers.MethodsWe chose a 3-step procedure to develop a needs-based prototype of a central information portal. In the first step, we determined the information needs of patients with rare diseases, their relatives, and health care professionals by means of qualitative interviews and their content-analytical evaluation. On the basis of this, we developed the basic structure of the portal. In the second step, we identified quality criteria for websites on rare diseases to ensure that the information linked with ZIPSE meets the quality demands. Therefore, we gathered existing criteria catalogs and discussed them in an expert workshop. In the third step, we implemented and tested the developed prototypical information portal.ResultsA portal page was configured and made accessible on the Web. The structure of ZIPSE was based on the findings from 108 qualitative interviews with patients, their relatives, and health care professionals, through which numerous information needs were identified. We placed particularly important areas of information, such as symptoms, therapy, research, and advisory services, on the start page. Moreover, we defined 13 quality criteria, referring to factors such as author information, creation date, and privacy, enabling links with high-quality information. Moreover, 19 users tested all the developed routines based on usability and comprehensibility. Subsequently, we improved the visual presentation of search results and other important search functions.ConclusionsThe implemented information portal, ZIPSE, provides high-quality information on rare diseases from a central point of access. By integrating the targeted groups as well as different experts on medical information during the construction, the website can assure an improved search for information for users. ZIPSE can also serve as a model for other Web-based information systems in the field of rare diseases.Registered Report IdentifierRR1-10.2196/7425

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“…However, still little is known about how people affected by a rare disease and their families search for information. Previous studies may be outdated, have relied on few single sources, focused on specific information needs only, and did not focus on rare diseases in general [19][20][21][22][23][24]. Teixeira et al [22] conducted a questionnaire survey of 1019 patients with a rare blood disorder, which showed that medical specialists are of particularly great importance when it comes to sources that were widely used for information gathering.…”

Section: Introductionmentioning

confidence: 99%

Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

et al. 2020

View full text Add to dashboard Cite

Background: Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources for specific rare diseases, little is known about the use of information sources for different rare diseases, how users rate these information sources based on their experiences, and how the use and importance of these information sources change over time. Methods: Fifty-five patients with a variety of rare diseases and 13 close relatives participated in qualitative interviews. For these interviews, a semi-structured guideline was developed, piloted, and revised. Data analysis involved a qualitative content analysis developed by Philipp Mayring. Results: The participants considered internet as the most important and widespread information source, especially for early information. Although patients have difficulty dealing with information obtained online, they consider online searching a quick and practical option to gather information. During the course of the disease, personal contact partners, especially self-help associations and specialized doctors, become more important. This is also because information provided online is sometimes insufficiently detailed to answer their information needs, which can be complemented by information from doctors and self-help.

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M270 Obtaining Information When You Have A Rare Disease - The Potential For Ipf Support Groups

Cited by 4 publications

References 0 publications

The Influence of different Sources on Disease-related Knowledge among Patients with Rare Diseases: A Qualitative Study

The Influence of different Sources on Disease-related Knowledge among Patients with Rare Diseases: A Qualitative Study

Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

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