Understanding information sharing about rare diseases: an evaluation of the NIH's website on AATD

Xun Zhu, Rachel A. Smith, Roxanne L. Parrott, Amber K. Worthington

Research output: Contribution to journalArticle

Abstract

Introduction: People with rare diseases have difficulty accessing high quality information about their conditions, which impedes their ability to be engaged patients. Federal agencies such as the National Institutes of Health (NIH) have created websites to disseminate disease-related information. This study explored how people with a rare disease–Alpha-1 Antitrypsin Deficiency (AATD)–evaluated the NIH's website on AATD and how participants’ evaluation, genetic determinism, and spirituality predicted their intentions to share the website with others. Method: Participants (N = 153) living with AATD made comments about the NIH's website on the disease, and completed a survey about their perceptions of the information, individual characteristics, and intentions to share the NIH website. Results: Qualitative analyses highlighted that participants wanted to access to more complete, high quality, and interesting information on AATD on a more user-friendly website. Quantitative analyses showed that participants were more likely to share the website if they judged the information as higher quality and more interesting, with a range of such responses appearing in relation to the same website, making it evident that the meaning of quality and interest varies. Participants with severe deficiency perceived the information as lower quality and less interesting than participants with mild deficiency. Participants with stronger genetic determinism beliefs and spirituality were more likely to share the NIH's website. Conclusions: We discuss how federal agencies can craft messages that assist people with rare diseases in learning more about their conditions and dealing with the burden of sharing high quality information with providers and the public.

Original languageEnglish (US)
Pages (from-to)128-139
Number of pages12
JournalJournal of Communication in Healthcare
Volume11
Issue number2
DOIs
StatePublished - Apr 3 2018

Fingerprint

Genetic Determinism
Spirituality
Information Dissemination
National Institutes of Health (U.S.)
Rare Diseases
website
Websites
Disease
Aptitude
evaluation
Learning
determinism
spirituality
Health
health

All Science Journal Classification (ASJC) codes

  • Communication
  • Health Information Management

Cite this

@article{1ac8e971650e4ec39dd8765c26d07b3e,
title = "Understanding information sharing about rare diseases: an evaluation of the NIH's website on AATD",
abstract = "Introduction: People with rare diseases have difficulty accessing high quality information about their conditions, which impedes their ability to be engaged patients. Federal agencies such as the National Institutes of Health (NIH) have created websites to disseminate disease-related information. This study explored how people with a rare disease–Alpha-1 Antitrypsin Deficiency (AATD)–evaluated the NIH's website on AATD and how participants’ evaluation, genetic determinism, and spirituality predicted their intentions to share the website with others. Method: Participants (N = 153) living with AATD made comments about the NIH's website on the disease, and completed a survey about their perceptions of the information, individual characteristics, and intentions to share the NIH website. Results: Qualitative analyses highlighted that participants wanted to access to more complete, high quality, and interesting information on AATD on a more user-friendly website. Quantitative analyses showed that participants were more likely to share the website if they judged the information as higher quality and more interesting, with a range of such responses appearing in relation to the same website, making it evident that the meaning of quality and interest varies. Participants with severe deficiency perceived the information as lower quality and less interesting than participants with mild deficiency. Participants with stronger genetic determinism beliefs and spirituality were more likely to share the NIH's website. Conclusions: We discuss how federal agencies can craft messages that assist people with rare diseases in learning more about their conditions and dealing with the burden of sharing high quality information with providers and the public.",
author = "Xun Zhu and Smith, {Rachel A.} and Parrott, {Roxanne L.} and Worthington, {Amber K.}",
year = "2018",
month = "4",
day = "3",
doi = "10.1080/17538068.2018.1453434",
language = "English (US)",
volume = "11",
pages = "128--139",
journal = "Journal of Communication in Healthcare",
issn = "1753-8068",
publisher = "Maney Publishing",
number = "2",

}

Understanding information sharing about rare diseases : an evaluation of the NIH's website on AATD. / Zhu, Xun; Smith, Rachel A.; Parrott, Roxanne L.; Worthington, Amber K.

In: Journal of Communication in Healthcare, Vol. 11, No. 2, 03.04.2018, p. 128-139.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Understanding information sharing about rare diseases

T2 - an evaluation of the NIH's website on AATD

AU - Zhu, Xun

AU - Smith, Rachel A.

AU - Parrott, Roxanne L.

AU - Worthington, Amber K.

PY - 2018/4/3

Y1 - 2018/4/3

N2 - Introduction: People with rare diseases have difficulty accessing high quality information about their conditions, which impedes their ability to be engaged patients. Federal agencies such as the National Institutes of Health (NIH) have created websites to disseminate disease-related information. This study explored how people with a rare disease–Alpha-1 Antitrypsin Deficiency (AATD)–evaluated the NIH's website on AATD and how participants’ evaluation, genetic determinism, and spirituality predicted their intentions to share the website with others. Method: Participants (N = 153) living with AATD made comments about the NIH's website on the disease, and completed a survey about their perceptions of the information, individual characteristics, and intentions to share the NIH website. Results: Qualitative analyses highlighted that participants wanted to access to more complete, high quality, and interesting information on AATD on a more user-friendly website. Quantitative analyses showed that participants were more likely to share the website if they judged the information as higher quality and more interesting, with a range of such responses appearing in relation to the same website, making it evident that the meaning of quality and interest varies. Participants with severe deficiency perceived the information as lower quality and less interesting than participants with mild deficiency. Participants with stronger genetic determinism beliefs and spirituality were more likely to share the NIH's website. Conclusions: We discuss how federal agencies can craft messages that assist people with rare diseases in learning more about their conditions and dealing with the burden of sharing high quality information with providers and the public.

AB - Introduction: People with rare diseases have difficulty accessing high quality information about their conditions, which impedes their ability to be engaged patients. Federal agencies such as the National Institutes of Health (NIH) have created websites to disseminate disease-related information. This study explored how people with a rare disease–Alpha-1 Antitrypsin Deficiency (AATD)–evaluated the NIH's website on AATD and how participants’ evaluation, genetic determinism, and spirituality predicted their intentions to share the website with others. Method: Participants (N = 153) living with AATD made comments about the NIH's website on the disease, and completed a survey about their perceptions of the information, individual characteristics, and intentions to share the NIH website. Results: Qualitative analyses highlighted that participants wanted to access to more complete, high quality, and interesting information on AATD on a more user-friendly website. Quantitative analyses showed that participants were more likely to share the website if they judged the information as higher quality and more interesting, with a range of such responses appearing in relation to the same website, making it evident that the meaning of quality and interest varies. Participants with severe deficiency perceived the information as lower quality and less interesting than participants with mild deficiency. Participants with stronger genetic determinism beliefs and spirituality were more likely to share the NIH's website. Conclusions: We discuss how federal agencies can craft messages that assist people with rare diseases in learning more about their conditions and dealing with the burden of sharing high quality information with providers and the public.

UR - http://www.scopus.com/inward/record.url?scp=85044745892&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85044745892&partnerID=8YFLogxK

U2 - 10.1080/17538068.2018.1453434

DO - 10.1080/17538068.2018.1453434

M3 - Article

AN - SCOPUS:85044745892

VL - 11

SP - 128

EP - 139

JO - Journal of Communication in Healthcare

JF - Journal of Communication in Healthcare

SN - 1753-8068

IS - 2

ER -