The Contribution of Online Peer-to-peer Communication Among Patients with Adrenal Disease to Patient-centered Care

Overview

Journal J Med Internet Res

Publisher JMIR Publications

Specialty Medical Informatics

Date 2015 Feb 28

PMID 25720377

Citations 7

Authors

Dirkjan Kauw

Han Repping-Wuts

Alida Noordzij

Nike Stikkelbroeck

Ad Hermus

Marjan Faber

Affiliations

Soon will be listed here.

Abstract

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.

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References

Wright K, Bell S . Health-related Support Groups on the Internet: Linking Empirical Findings to Social Support and Computer-mediated Communication Theory. J Health Psychol. 2011; 8(1):39-54. DOI: 10.1177/1359105303008001429. View

van de Belt T, Hendriks A, Aarts J, Kremer J, Faber M, Nelen W . Evaluation of patients' questions to identify gaps in information provision to infertile patients. Hum Fertil (Camb). 2014; 17(2):133-40. DOI: 10.3109/14647273.2014.912762. View

Sonino N, Bonnini S, Fallo F, Boscaro M, Fava G . Personality characteristics and quality of life in patients treated for Cushing's syndrome. Clin Endocrinol (Oxf). 2006; 64(3):314-8. DOI: 10.1111/j.1365-2265.2006.02462.x. View

Ziebland S, Wyke S . Health and illness in a connected world: how might sharing experiences on the internet affect people's health?. Milbank Q. 2012; 90(2):219-49. PMC: 3460203. DOI: 10.1111/j.1468-0009.2012.00662.x. View

Pope C, Ziebland S, Mays N . Qualitative research in health care. Analysing qualitative data. BMJ. 2000; 320(7227):114-6. PMC: 1117368. DOI: 10.1136/bmj.320.7227.114. View

Coulson N, Buchanan H, Aubeeluck A . Social support in cyberspace: a content analysis of communication within a Huntington's disease online support group. Patient Educ Couns. 2007; 68(2):173-8. DOI: 10.1016/j.pec.2007.06.002. View

Vennik F, Adams S, Faber M, Putters K . Expert and experiential knowledge in the same place: patients' experiences with online communities connecting patients and health professionals. Patient Educ Couns. 2014; 95(2):265-70. DOI: 10.1016/j.pec.2014.02.003. View

Zimmermann C, Del Piccolo L, Finset A . Cues and concerns by patients in medical consultations: a literature review. Psychol Bull. 2007; 133(3):438-63. DOI: 10.1037/0033-2909.133.3.438. View

Michie S, Miles J, Weinman J . Patient-centredness in chronic illness: what is it and does it matter?. Patient Educ Couns. 2003; 51(3):197-206. DOI: 10.1016/s0738-3991(02)00194-5. View

10.

Harsch I, Schuller A, Hahn E, Hensen J . Cortisone replacement therapy in endocrine disorders - quality of self-care. J Eval Clin Pract. 2010; 16(3):492-8. DOI: 10.1111/j.1365-2753.2009.01149.x. View

11.

Wagenmakers M, Netea-Maier R, Prins J, Dekkers T, den Heijer M, Hermus A . Impaired quality of life in patients in long-term remission of Cushing's syndrome of both adrenal and pituitary origin: a remaining effect of long-standing hypercortisolism?. Eur J Endocrinol. 2012; 167(5):687-95. DOI: 10.1530/EJE-12-0308. View

12.

Mo P, Coulson N . Exploring the communication of social support within virtual communities: a content analysis of messages posted to an online HIV/AIDS support group. Cyberpsychol Behav. 2008; 11(3):371-4. DOI: 10.1089/cpb.2007.0118. View

13.

van Uden-Kraan C, Drossaert C, Taal E, Seydel E, van de Laar M . Self-reported differences in empowerment between lurkers and posters in online patient support groups. J Med Internet Res. 2008; 10(2):e18. PMC: 2483925. DOI: 10.2196/jmir.992. View

14.

Hong Y, Pena-Purcell N, Ory M . Outcomes of online support and resources for cancer survivors: a systematic literature review. Patient Educ Couns. 2011; 86(3):288-96. DOI: 10.1016/j.pec.2011.06.014. View

15.

Repping-Wuts H, Stikkelbroeck N, Noordzij A, Kerstens M, Hermus A . A glucocorticoid education group meeting: an effective strategy for improving self-management to prevent adrenal crisis. Eur J Endocrinol. 2013; 169(1):17-22. DOI: 10.1530/EJE-12-1094. View

16.

Greene J, Choudhry N, Kilabuk E, Shrank W . Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med. 2010; 26(3):287-92. PMC: 3043192. DOI: 10.1007/s11606-010-1526-3. View

17.

Forss M, Batcheller G, Skrtic S, Johannsson G . Current practice of glucocorticoid replacement therapy and patient-perceived health outcomes in adrenal insufficiency - a worldwide patient survey. BMC Endocr Disord. 2012; 12:8. PMC: 3403959. DOI: 10.1186/1472-6823-12-8. View

18.

Tiemensma J, Kaptein A, Pereira A, Smit J, Romijn J, Biermasz N . Negative illness perceptions are associated with impaired quality of life in patients after long-term remission of Cushing's syndrome. Eur J Endocrinol. 2011; 165(4):527-35. DOI: 10.1530/EJE-11-0307. View

19.

Hahner S, Allolio B . Therapeutic management of adrenal insufficiency. Best Pract Res Clin Endocrinol Metab. 2009; 23(2):167-79. DOI: 10.1016/j.beem.2008.09.009. View

20.

Schad R, SCHNEIDER P, Nold E . Reimbursable pharmacy teaching program for adrenalectomy patients. Am J Hosp Pharm. 1979; 36(9):1212-4. View