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The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care
BACKGROUND: Addison’s disease and Cushing’s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care. OBJECTIVE: Our aim was to ana...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications Inc.
2015
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4392550/ https://www.ncbi.nlm.nih.gov/pubmed/25720377 http://dx.doi.org/10.2196/jmir.3869 |
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author | Kauw, Dirkjan Repping-Wuts, Han Noordzij, Alida Stikkelbroeck, Nike Hermus, Ad Faber, Marjan |
author_facet | Kauw, Dirkjan Repping-Wuts, Han Noordzij, Alida Stikkelbroeck, Nike Hermus, Ad Faber, Marjan |
author_sort | Kauw, Dirkjan |
collection | PubMed |
description | BACKGROUND: Addison’s disease and Cushing’s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care. OBJECTIVE: Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care. METHODS: For this study a consecutive sample of 300 questions (“threads”) from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti. RESULTS: From the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences. CONCLUSIONS: On an online patient forum for Cushing’s syndrome and Addison’s disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals. |
format | Online Article Text |
id | pubmed-4392550 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2015 |
publisher | JMIR Publications Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-43925502015-04-23 The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care Kauw, Dirkjan Repping-Wuts, Han Noordzij, Alida Stikkelbroeck, Nike Hermus, Ad Faber, Marjan J Med Internet Res Original Paper BACKGROUND: Addison’s disease and Cushing’s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care. OBJECTIVE: Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care. METHODS: For this study a consecutive sample of 300 questions (“threads”) from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti. RESULTS: From the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences. CONCLUSIONS: On an online patient forum for Cushing’s syndrome and Addison’s disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals. JMIR Publications Inc. 2015-02-25 /pmc/articles/PMC4392550/ /pubmed/25720377 http://dx.doi.org/10.2196/jmir.3869 Text en ©Dirkjan Kauw, Han Repping-Wuts, Alida Noordzij, Nike Stikkelbroeck, Ad Hermus, Marjan Faber. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 25.02.2015. http://creativecommons.org/licenses/by/2.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included. |
spellingShingle | Original Paper Kauw, Dirkjan Repping-Wuts, Han Noordzij, Alida Stikkelbroeck, Nike Hermus, Ad Faber, Marjan The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care |
title | The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care |
title_full | The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care |
title_fullStr | The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care |
title_full_unstemmed | The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care |
title_short | The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care |
title_sort | contribution of online peer-to-peer communication among patients with adrenal disease to patient-centered care |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4392550/ https://www.ncbi.nlm.nih.gov/pubmed/25720377 http://dx.doi.org/10.2196/jmir.3869 |
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