Online information seeking by patients with bipolar disorder: results from an international multisite survey

Jörn Conell; Rita Bauer; Tasha Glenn; Martin Alda; Raffaella Ardau; Bernhard T Baune; Michael Berk; Yuly Bersudsky; Amy Bilderbeck; Alberto Bocchetta; Letizia Bossini; Angela Marianne Paredes Castro; Eric Yat Wo Cheung; Caterina Chillotti; Sabine Choppin; Maria Del Zompo; Rodrigo Dias; Seetal Dodd; Anne Duffy; Bruno Etain; Andrea Fagiolini; Julie Garnham; John Geddes; Jonas Gildebro; Ana Gonzalez-Pinto; Guy M Goodwin; Paul Grof; Hirohiko Harima; Stefanie Hassel; Chantal Henry; Diego Hidalgo-Mazzei; Vaisnvy Kapur; Girish Kunigiri; Beny Lafer; Chun Lam; Erik Roj Larsen; Ute Lewitzka; Rasmus Licht; Anne Hvenegaard Lund; Blazej Misiak; Patryk Piotrowski; Scott Monteith; Rodrigo Munoz; Takako Nakanotani; René E Nielsen; Claire O'Donovan; Yasushi Okamura; Yamima Osher; Andreas Reif; Philipp Ritter; Janusz K Rybakowski; Kemal Sagduyu; Brett Sawchuk; Elon Schwartz; Ângela Miranda Scippa; Claire Slaney; Ahmad Hatim Sulaiman; Kirsi Suominen; Aleksandra Suwalska; Peter Tam; Yoshitaka Tatebayashi; Leonardo Tondo; Eduard Vieta; Maj Vinberg; Biju Viswanath; Julia Volkert; Mark Zetin; Iñaki Zorrilla; Peter C Whybrow; Michael Bauer

doi:10.1186/s40345-016-0058-0

Online information seeking by patients with bipolar disorder: results from an international multisite survey

Jörn Conell, Rita Bauer, Tasha Glenn, Martin Alda, Raffaella Ardau, Bernhard T Baune, Michael Berk, Yuly Bersudsky, Amy Bilderbeck, Alberto Bocchetta, Letizia Bossini, Angela Marianne Paredes Castro, Eric Yat Wo Cheung, Caterina Chillotti, Sabine Choppin, Maria Del Zompo, Rodrigo Dias, Seetal Dodd, Anne Duffy, Bruno EtainAndrea Fagiolini, Julie Garnham, John Geddes, Jonas Gildebro, Ana Gonzalez-Pinto, Guy M Goodwin, Paul Grof, Hirohiko Harima, Stefanie Hassel, Chantal Henry, Diego Hidalgo-Mazzei, Vaisnvy Kapur, Girish Kunigiri, Beny Lafer, Chun Lam, Erik Roj Larsen, Ute Lewitzka, Rasmus Licht, Anne Hvenegaard Lund, Blazej Misiak, Patryk Piotrowski, Scott Monteith, Rodrigo Munoz, Takako Nakanotani, René E Nielsen, Claire O'Donovan, Yasushi Okamura, Yamima Osher, Andreas Reif, Philipp Ritter, Janusz K Rybakowski, Kemal Sagduyu, Brett Sawchuk, Elon Schwartz, Ângela Miranda Scippa, Claire Slaney, Ahmad Hatim Sulaiman, Kirsi Suominen, Aleksandra Suwalska, Peter Tam, Yoshitaka Tatebayashi, Leonardo Tondo, Eduard Vieta, Maj Vinberg, Biju Viswanath, Julia Volkert, Mark Zetin, Iñaki Zorrilla, Peter C Whybrow, Michael Bauer

Research output: Contribution to journal › Journal article › Research › peer-review

28 Citations (Scopus)

Abstract

BACKGROUND: Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information.

METHODS: A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data.

RESULTS: 976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone, and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor.

CONCLUSION: Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.

Original language	English
Article number	17
Journal	International Journal of Bipolar Disorders
Volume	4
Number of pages	14
ISSN	2194-7511
DOIs	https://doi.org/10.1186/s40345-016-0058-0
Publication status	Published - Dec 2016

Keywords

Journal Article

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Online information seeking by patients with bipolar disorder: results from an international multisite survey
Conell, J. (Creator), Bauer, R. (Creator), Glenn, T. (Creator), Alda, M. (Creator), Ardau, R. (Creator), Baune, B. T. (Creator), Berk, M. (Creator), Bersudsky, Y. (Contributor), Bilderbeck, A. (Creator), Bocchetta, A. (Creator), Bossini, L. (Creator), Paredes Castro, A. M. (Contributor), Cheung, E. Y. W. (Creator), Chillotti, C. (Creator), Choppin, S. (Creator), Del Zompo, M. (Contributor), Dias, R. (Creator), Dodd, S. (Contributor), Duffy, A. (Creator), Etain, B. (Creator), Fagiolini, A. (Creator), Garnham, J. (Creator), Geddes, J. (Creator), Gildebro, J. (Creator), Gonzalez-Pinto, A. (Creator), Goodwin, G. M. (Creator), Grof, P. (Creator), Harima, H. (Creator), Hassel, S. (Creator), Henry, C. (Creator), Hidalgo-Mazzei, D. (Creator), Kapur, V. (Contributor), Kunigiri, G. (Contributor), Lafer, B. (Contributor), Lam, C. (Creator), Larsen, E. R. (Creator), Lewitzka, U. (Creator), Licht, R. W. (Creator), Lund, A. H. (Creator), Misiak, B. (Contributor), Piotrowski, P. (Creator), Monteith, S. (Creator), Munoz, R. (Creator), Nakanotani, T. (Creator), Nielsen, R. E. (Creator), O’Donovan, C. (Creator), Okamura, Y. (Creator), Osher, Y. (Contributor), Reif, A. (Creator), Ritter, P. (Creator), Rybakowski, J. K. (Creator), Sagduyu, K. (Creator), Sawchuk, B. (Creator), Schwartz, E. (Creator), Scippa, Â. M. (Creator), Slaney, C. (Creator), Sulaiman, A. H. (Creator), Suominen, K. (Creator), Suwalska, A. (Creator), Tam, P. (Creator), Tatebayashi, Y. (Creator), Tondo, L. (Creator), Vieta, E. (Creator), Viswanath, B. (Contributor), Volkert, J. (Creator), Zetin, M. (Creator), Zorrilla, I. (Creator), Whybrow, P. C. (Creator) & Bauer, M. (Creator), Figshare, 2016
DOI: 10.6084/m9.figshare.c.3637217, https://figshare.com/collections/Online_information_seeking_by_patients_with_bipolar_disorder_results_from_an_international_multisite_survey/3637217
Dataset
Online information seeking by patients with bipolar disorder: results from an international multisite survey
Conell, J. (Creator), Bauer, R. (Creator), Glenn, T. (Creator), Alda, M. (Creator), Ardau, R. (Creator), Baune, B. T. (Creator), Berk, M. (Creator), Bersudsky, Y. (Contributor), Bilderbeck, A. (Creator), Bocchetta, A. (Creator), Bossini, L. (Creator), Paredes Castro, A. M. (Contributor), Cheung, E. Y. W. (Creator), Chillotti, C. (Creator), Choppin, S. (Creator), Del Zompo, M. (Contributor), Dias, R. (Creator), Dodd, S. (Contributor), Duffy, A. (Creator), Etain, B. (Creator), Fagiolini, A. (Creator), Garnham, J. (Creator), Geddes, J. (Creator), Gildebro, J. (Creator), Gonzalez-Pinto, A. (Creator), Goodwin, G. M. (Creator), Grof, P. (Creator), Harima, H. (Creator), Hassel, S. (Creator), Henry, C. (Creator), Hidalgo-Mazzei, D. (Creator), Kapur, V. (Contributor), Kunigiri, G. (Contributor), Lafer, B. (Contributor), Lam, C. (Creator), Larsen, E. R. (Creator), Lewitzka, U. (Creator), Licht, R. W. (Creator), Lund, A. H. (Creator), Misiak, B. (Contributor), Piotrowski, P. (Creator), Monteith, S. (Creator), Munoz, R. (Creator), Nakanotani, T. (Creator), Nielsen, R. E. (Creator), O’Donovan, C. (Creator), Okamura, Y. (Creator), Osher, Y. (Contributor), Reif, A. (Creator), Ritter, P. (Creator), Rybakowski, J. K. (Creator), Sagduyu, K. (Creator), Sawchuk, B. (Creator), Schwartz, E. (Creator), Scippa, Â. M. (Creator), Slaney, C. (Creator), Sulaiman, A. H. (Creator), Suominen, K. (Creator), Suwalska, A. (Creator), Tam, P. (Creator), Tatebayashi, Y. (Creator), Tondo, L. (Creator), Vieta, E. (Creator), Viswanath, B. (Contributor), Volkert, J. (Creator), Zetin, M. (Creator), Zorrilla, I. (Creator), Whybrow, P. C. (Creator) & Bauer, M. (Creator), Figshare, 2016
DOI: 10.6084/m9.figshare.c.3637217.v1, https://figshare.com/collections/Online_information_seeking_by_patients_with_bipolar_disorder_results_from_an_international_multisite_survey/3637217/1
Dataset
MOESM1 of Online information seeking by patients with bipolar disorder: results from an international multisite survey
Conell, J. (Contributor), Bauer, R. (Creator), Glenn, T. (Creator), Alda, M. (Creator), Ardau, R. (Creator), Baune, B. T. (Creator), Berk, M. (Creator), Bersudsky, Y. (Contributor), Bilderbeck, A. (Creator), Bocchetta, A. (Creator), Bossini, L. (Creator), Paredes Castro, A. M. (Contributor), Cheung, E. Y. W. (Creator), Chillotti, C. (Creator), Choppin, S. (Creator), Del Zompo, M. (Contributor), Dias, R. (Creator), Dodd, S. (Contributor), Duffy, A. (Creator), Etain, B. (Creator), Fagiolini, A. (Creator), Garnham, J. (Creator), Geddes, J. (Creator), Gildebro, J. (Creator), Gonzalez-Pinto, A. (Creator), Goodwin, G. M. (Creator), Grof, P. (Creator), Harima, H. (Creator), Hassel, S. (Creator), Henry, C. (Creator), Hidalgo-Mazzei, D. (Creator), Kapur, V. (Contributor), Kunigiri, G. (Contributor), Lafer, B. (Contributor), Lam, C. (Creator), Larsen, E. R. (Creator), Lewitzka, U. (Creator), Licht, R. W. (Creator), Lund, A. H. (Creator), Misiak, B. (Contributor), Piotrowski, P. (Creator), Monteith, S. (Creator), Munoz, R. (Creator), Nakanotani, T. (Creator), Nielsen, R. E. (Contributor), O’Donovan, C. (Contributor), Okamura, Y. (Creator), Osher, Y. (Contributor), Reif, A. (Creator), Ritter, P. (Creator), Rybakowski, J. K. (Creator), Sagduyu, K. (Creator), Sawchuk, B. (Creator), Schwartz, E. (Creator), Scippa, Â. M. (Contributor), Slaney, C. (Creator), Sulaiman, A. H. (Creator), Suominen, K. (Creator), Suwalska, A. (Creator), Tam, P. (Creator), Tatebayashi, Y. (Creator), Tondo, L. (Creator), Vieta, E. (Creator), Viswanath, B. (Contributor), Volkert, J. (Creator), Zetin, M. (Creator), Zorrilla, I. (Contributor), Whybrow, P. C. (Creator) & Bauer, M. (Creator), Figshare, 2016
DOI: 10.6084/m9.figshare.c.3637217_d1.v1, https://doi.org/10.6084%2Fm9.figshare.c.3637217_d1.v1
Dataset

Cite this

Conell, J., Bauer, R., Glenn, T., Alda, M., Ardau, R., Baune, B. T., Berk, M., Bersudsky, Y., Bilderbeck, A., Bocchetta, A., Bossini, L., Paredes Castro, A. M., Cheung, E. Y. W., Chillotti, C., Choppin, S., Del Zompo, M., Dias, R., Dodd, S., Duffy, A., ... Bauer, M. (2016). Online information seeking by patients with bipolar disorder: results from an international multisite survey. International Journal of Bipolar Disorders, 4, Article 17. https://doi.org/10.1186/s40345-016-0058-0

@article{c81002720a6b4f17aa600f3c789e1d1a,

title = "Online information seeking by patients with bipolar disorder: results from an international multisite survey",

abstract = "BACKGROUND: Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information.METHODS: A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data.RESULTS: 976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone, and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor.CONCLUSION: Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.",

keywords = "Journal Article",

author = "J{\"o}rn Conell and Rita Bauer and Tasha Glenn and Martin Alda and Raffaella Ardau and Baune, {Bernhard T} and Michael Berk and Yuly Bersudsky and Amy Bilderbeck and Alberto Bocchetta and Letizia Bossini and {Paredes Castro}, {Angela Marianne} and Cheung, {Eric Yat Wo} and Caterina Chillotti and Sabine Choppin and {Del Zompo}, Maria and Rodrigo Dias and Seetal Dodd and Anne Duffy and Bruno Etain and Andrea Fagiolini and Julie Garnham and John Geddes and Jonas Gildebro and Ana Gonzalez-Pinto and Goodwin, {Guy M} and Paul Grof and Hirohiko Harima and Stefanie Hassel and Chantal Henry and Diego Hidalgo-Mazzei and Vaisnvy Kapur and Girish Kunigiri and Beny Lafer and Chun Lam and Larsen, {Erik Roj} and Ute Lewitzka and Rasmus Licht and Lund, {Anne Hvenegaard} and Blazej Misiak and Patryk Piotrowski and Scott Monteith and Rodrigo Munoz and Takako Nakanotani and Nielsen, {Ren{\'e} E} and Claire O'Donovan and Yasushi Okamura and Yamima Osher and Andreas Reif and Philipp Ritter and Rybakowski, {Janusz K} and Kemal Sagduyu and Brett Sawchuk and Elon Schwartz and Scippa, {{\^A}ngela Miranda} and Claire Slaney and Sulaiman, {Ahmad Hatim} and Kirsi Suominen and Aleksandra Suwalska and Peter Tam and Yoshitaka Tatebayashi and Leonardo Tondo and Eduard Vieta and Maj Vinberg and Biju Viswanath and Julia Volkert and Mark Zetin and I{\~n}aki Zorrilla and Whybrow, {Peter C} and Michael Bauer",

year = "2016",

month = dec,

doi = "10.1186/s40345-016-0058-0",

language = "English",

volume = "4",

journal = "International Journal of Bipolar Disorders",

issn = "2194-7511",

publisher = "Springer",

}

Conell, J, Bauer, R, Glenn, T, Alda, M, Ardau, R, Baune, BT, Berk, M, Bersudsky, Y, Bilderbeck, A, Bocchetta, A, Bossini, L, Paredes Castro, AM, Cheung, EYW, Chillotti, C, Choppin, S, Del Zompo, M, Dias, R, Dodd, S, Duffy, A, Etain, B, Fagiolini, A, Garnham, J, Geddes, J, Gildebro, J, Gonzalez-Pinto, A, Goodwin, GM, Grof, P, Harima, H, Hassel, S, Henry, C, Hidalgo-Mazzei, D, Kapur, V, Kunigiri, G, Lafer, B, Lam, C, Larsen, ER, Lewitzka, U, Licht, R, Lund, AH, Misiak, B, Piotrowski, P, Monteith, S, Munoz, R, Nakanotani, T, Nielsen, RE, O'Donovan, C, Okamura, Y, Osher, Y, Reif, A, Ritter, P, Rybakowski, JK, Sagduyu, K, Sawchuk, B, Schwartz, E, Scippa, ÂM, Slaney, C, Sulaiman, AH, Suominen, K, Suwalska, A, Tam, P, Tatebayashi, Y, Tondo, L, Vieta, E, Vinberg, M, Viswanath, B, Volkert, J, Zetin, M, Zorrilla, I, Whybrow, PC & Bauer, M 2016, 'Online information seeking by patients with bipolar disorder: results from an international multisite survey', International Journal of Bipolar Disorders, vol. 4, 17. https://doi.org/10.1186/s40345-016-0058-0

TY - JOUR

T1 - Online information seeking by patients with bipolar disorder

T2 - results from an international multisite survey

AU - Conell, Jörn

AU - Bauer, Rita

AU - Glenn, Tasha

AU - Alda, Martin

AU - Ardau, Raffaella

AU - Baune, Bernhard T

AU - Berk, Michael

AU - Bersudsky, Yuly

AU - Bilderbeck, Amy

AU - Bocchetta, Alberto

AU - Bossini, Letizia

AU - Paredes Castro, Angela Marianne

AU - Cheung, Eric Yat Wo

AU - Chillotti, Caterina

AU - Choppin, Sabine

AU - Del Zompo, Maria

AU - Dias, Rodrigo

AU - Dodd, Seetal

AU - Duffy, Anne

AU - Etain, Bruno

AU - Fagiolini, Andrea

AU - Garnham, Julie

AU - Geddes, John

AU - Gildebro, Jonas

AU - Gonzalez-Pinto, Ana

AU - Goodwin, Guy M

AU - Grof, Paul

AU - Harima, Hirohiko

AU - Hassel, Stefanie

AU - Henry, Chantal

AU - Hidalgo-Mazzei, Diego

AU - Kapur, Vaisnvy

AU - Kunigiri, Girish

AU - Lafer, Beny

AU - Lam, Chun

AU - Larsen, Erik Roj

AU - Lewitzka, Ute

AU - Licht, Rasmus

AU - Lund, Anne Hvenegaard

AU - Misiak, Blazej

AU - Piotrowski, Patryk

AU - Monteith, Scott

AU - Munoz, Rodrigo

AU - Nakanotani, Takako

AU - Nielsen, René E

AU - O'Donovan, Claire

AU - Okamura, Yasushi

AU - Osher, Yamima

AU - Reif, Andreas

AU - Ritter, Philipp

AU - Rybakowski, Janusz K

AU - Sagduyu, Kemal

AU - Sawchuk, Brett

AU - Schwartz, Elon

AU - Scippa, Ângela Miranda

AU - Slaney, Claire

AU - Sulaiman, Ahmad Hatim

AU - Suominen, Kirsi

AU - Suwalska, Aleksandra

AU - Tam, Peter

AU - Tatebayashi, Yoshitaka

AU - Tondo, Leonardo

AU - Vieta, Eduard

AU - Vinberg, Maj

AU - Viswanath, Biju

AU - Volkert, Julia

AU - Zetin, Mark

AU - Zorrilla, Iñaki

AU - Whybrow, Peter C

AU - Bauer, Michael

PY - 2016/12

Y1 - 2016/12

N2 - BACKGROUND: Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information.METHODS: A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data.RESULTS: 976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone, and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor.CONCLUSION: Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.

AB - BACKGROUND: Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information.METHODS: A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data.RESULTS: 976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone, and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor.CONCLUSION: Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.

KW - Journal Article

U2 - 10.1186/s40345-016-0058-0

DO - 10.1186/s40345-016-0058-0

M3 - Journal article

C2 - 27552813

SN - 2194-7511

VL - 4

JO - International Journal of Bipolar Disorders

JF - International Journal of Bipolar Disorders

M1 - 17

ER -

Online information seeking by patients with bipolar disorder: results from an international multisite survey

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