394 Original Article
YouTube as a Source of Information for Children with Paroxysmal Episodes
Authors
P. Borusiak1, T. Langer1, D. Tibussek2, T. Becher3, A. C. Jenke4, S. Cagnoli1, M. Karenfort5
Affiliations
Affiliation addresses are listed at the end of the article
Key words ▶ video ● ▶ internet ● ▶ epilepsy ● ▶ sandifer syndrome ● ▶ absence epilepsy ● ▶ shuddering attacks ●
Abstract
Zusammenfassung
Objective: Whereas to date the internet is a main source of information for many parents, there are no restrictions regarding data presentation. Thus, the aim of this study was to assess the quality of internet material concerning paroxysmal episodes. Study design: We rated videos on YouTube for several conditions like infantile spasms, absence seizures, Sandifer syndrome, sleep myoclonus, and shuddering attacks. Videos were classified into different categories of certainty of diagnosis according to expert opinion based on a 4 point Likert scale followed by calculation of interrater reliability. Also the quality of supplemental information was assessed, as well as whether videos were helpful from a neuropaediatrican’s point of view in counselling patients and their parents. Results: In sleep myoclonus, absences and infantile spasms correlation between title of videos and classification by expert opinion was good. There was more discrepancy with the videos concerning Sandifer syndrome and shuddering attacks. Interrater reliability was low for Sandifer syndrome, fair for absences, shuddering attacks and sleep myoclonus and moderate for infantile spasms. Some supplemental information was rated to be helpful but other information was found to be misleading or even unsettling for patients and their parents. Conclusions: We consider that video material on YouTube can generally not be considered as helpful for parents because of a significant disagreement between experts, even for the most well defined disorders in our study.
Hintergrund: Für viele Patienten und ihre Eltern dient heutzutage das Internet als wichtige Informationsquelle für Erkrankungen. Da die Informationen keiner fachlichen Kontrolle unterliegen, haben wir die Qualität frei zugänglicher Videos zu verschiedenen Symptomen und neuropädiatrischen Erkrankungen untersucht. Methode: Es wurden Videos auf YouTube beurteilt, die unter den Stichworten infantile Spasmen, Absencen, Schlafmyoklonien, Schauderattacken oder Sandifer-Syndrom zu finden waren. Mittels einer 4-stufigen Likert-Skala erfolgte eine Beurteilung hinsichtlich der Sicherheit der Diagnose, wobei anschließend auch die Variabilität der Beurteilungen berechnet wurde. Es erfolgte eine Bewertung der Zusatzinformationen auf der jeweiligen YouTube-Seite und eine Einschätzung, ob aus neuropädiatrischer Sicht diese Informationen als hilfreich für die Beratung der Patienten und Eltern eingeschätzt wurden. Ergebnisse: Für die Videos, betreffend Schlafmyoklonien, Absencen und infantile Spasmen, ergab sich eine gute Korrelation zwischen der Einordnung der Videos auf YouTube und der Beurteilung durch die Experten, wohingegen sich für Schauderattacken und Sandifer-Syndrom größere Diskrepanzen zeigten. Bei der Variabilität der Beurteilungen ergab sich eine gute Übereinstimmung für infantile Spasmen, eine relativ gute für Absencen, Schauderattacken und Schlafmyoklonien und nur eine mäßige für Sandifer-Syndrom. Einige Zusatzinformationen auf den jeweiligen Seiten wurden als hilfreich eingeschätzt, viele Informationen jedoch eher als irreführend oder auch potenziell beunruhigend. Schlussfolgerung: Nach unserer Untersuchung sind Videos auf YouTube nicht generell als hilfreich zu empfehlen, da eher eine zusätzliche Verunsicherung befürchtet werden muss. Wir empfehlen, die Videos möglichst zusammen mit den Eltern anzusehen und eine direkte Einschätzung abzugeben.
Schlüsselwörter ▶ Video ● ▶ Internet ● ▶ Epilepsie ● ▶ Sandifer-Syndrom ● ▶ Absence ● ▶ Schauderattacken ●
Bibliography DOI http://dx.doi.org/ 10.1055/s-0033-1353142 Published online: October 24, 2013 Klin Padiatr 2013; 225: 394–397 © Georg Thieme Verlag KG Stuttgart · New York ISSN 0300-8630 Correspondence Thomas Becher Sana Hospital Duesseldorf Centre of Child Neurology Duesseldorf-Gerresheim Graeulinger Strasse 120 40625 Duesseldorf Germany Tel.: + 49/177/3787 455 Fax: + 49/211/2800 980 [email protected]
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Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
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YouTube als Informationsquelle über Kinder mit paroxysmalen Episoden
Original Article 395
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The internet has become indispensable as source of information and a way to share personal experiences – even for parents of children and adolescents with (suspected) diseases. In fact, in many countries the internet is the number one source of health information [10]. On one hand this might complicate treatment and communication because of false or misleading information. On the other hand management might be facilitated if the obtained information meets the doctor’s approval. It is hardly possible to categorize or even rate all available information sites even if many initiatives either private or official try to certify trustworthy and reputable sources. YouTube is the third most popular website in the world behind www.google.com and www.facebook.com with more than 26 % of global internet users visiting youtube.com [1]. As a video-based source, it contains potentially important information for parents with children with strange motor phenomenon or suspected epileptic seizures. This includes conditions where diagnosis is sometimes challenging like infantile spasms, absence seizures, Sandifer syndrome, sleep myoclonus, and shuddering attacks [3]. In particular the non-epileptic stereotype motor movements of shuddering attacks, Sandifer syndrome and sleep myoclonus are often misdiagnosed. Confusion with tonic, myoclonic, and absence seizures and with West syndrome has been reported possibly leading to unnecessary anticonvulsive treatment [9, 15]. As a consequence, parents are seeking further information due to the common diagnostic challenges. The aim of our study was to assess whether videos of certain neurological conditions shown in the internet could be helpful from a neuropaediatrican’s point of view in counselling patients and their parents. Therefore, we performed an internet search on video material provided by sources like YouTube for 5 different conditions. Results were analysed for clinical relevance and correctness by 7 independent physicians. Interobserver reliability was assessed.
Methods
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All videos were collected from a German IP-address using www. youtube.com on 17th July 2011 using the search terms “shuddering attacks” and “infantile spasms” and from 17th August till 26th August 2011 for “sleep myoclonus”, “Sandifer syndrome” and “absence seizures”. All “hits” were then further analysed. We extracted information about the video’s URL on YouTube for future access, the title of the video, the number of hits, the date when the video was posted, the length of the video and the number of comments. Double posts were excluded. All remaining videos were then classified by the expert opinion of all the authors who are board certified paediatric neurologists (P.B., D.T., T.B., S.C., M.K.) or experienced in the treatment of neurological disorders in children (T.L., A.J.). The classification was done individually on a 4 point Likert scale with categories: “definitely not” (0), “unlikely” (1), “probable” (2), “definite” (3) or “assessment not possible” for correlation of title of the video and clinical diagnosis.
Statistics
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Data analysis was carried out according to a pre-established analysis plan. Mean value, standard deviation, median and range were calculated for the days online on YouTube, number of views and length of videos. We also calculated mean values for the
classification pertaining to the question whether the label of the condition on YouTube was consistent with the expert opinion. Fleiss’ kappa allows to assess interrater reliability between more than 2 raters allocating categorial ratings. It was calculated for each of the 5 video categories. As there is no general agreement of the significance of specific values we defined kappa from 0 to 0,20 as slight agreement, kappa from 0,21 to 0,40 as fair agreement, kappa from 0,41 to 0,60 as moderate agreement, kappa from 0,61 to 0,80 as substantial agreement and kappa from 0,81 to 1,00 as almost perfect agreement following Landis and Koch [6].
Results
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A search on YouTube performed on 17th July 2011 revealed 17 hits for “shuddering attacks” dealing with infants with this specific medical condition. The top 5 videos were seen more than 50 000 times. Looking for “absence seizures” we found 448 hits with more than 500 000 views. Further data concerning days on YouTube, number of views, length of videos as well as agreement between title of videos on YouTube and classification of authors ▶ Table 1. opinion and interrater reliability are provided in ● In sleep myoclonus, absences and infantile spasms agreement between title of videos on YouTube and classification of author’s opinion was quite good. On the other hand there was more disagreement with the videos concerning Sandifer syndrome and shuddering attacks. In some videos a fair judgement was very hard to make due to quality and/or duration of the video. Some videos were very short with the crucial scene right at the beginning whereas others lasted several minutes with the key scene somewhere in the middle or at the end. However, only the minority of videos (n = 9, 7.4 %) could not be rated due to very short duration or poor quality material. Most videos did not have additional uploader comments but some provided supplementary information which could be helpful to parents. On the other hand, in some cases the provided supplemental information was considered possibly misleading. For example, one comment on a video, headed “Benign Neonatal Sleep Myoclonus”, contained the following information: “So if your baby does this PLEASE do not let the doctors poke and do unnecessary testing ask them about this syndrome first and don't let doctors give them unnecessary medication to treat this syndrome because it will get worse and can possible hurt your child.”
Discussion
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There are diverging opinions concerning the usefulness of internet resources, especially YouTube, as source of medical information. With our study we attempted to add objective evidence to this debate providing the first quality/correctness analysis of internet videos about neuropaediatric movement disorders. Overall, there were only 3 videos by professional institutions among the top 121 videos. A further comparison – professional vs. amateur – was not possible due to this small number. Even if professional sites often provide more serious and profound information, most internet users prefer other sites. In addition, some of the professional sites have to stop their services due to financial reasons like www.wemove.org. Reflecting the public disagreement our results were also somewhat conflicting. Whereas many videos were classified correctly Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
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Introduction
396 Original Article
accessed no of videos assesed days on YouTube views
length of videos in seconds amateur/professional classification (mean) Fleiss’ Kappa
Shuddering
Infantile spasms
Absences
Sandifer
Sleep myoclonus
17.7.2011 17 947 ± 567 (median 1 073; range 143–1 783) 5 982 ± 10 797 (median 1 920; range 69–45 426)
17.07.2011 20 1 165 ± 316 (median 1 183; range 759–1 949) 41 228 ± 30 422 (median 34 865; range 13 797–131 871) 124 ± 89 (median 102; range 24–370) 19/1 1,67 0,49
17.08.2011 25 1 018 ± 356 (median 889; range 362–1 853) 54 700 ± 66 247 (median 24 171; range 5 595–268 788) 68 ± 58 (median 54; range 10–180) 23/2 1,69 0,32
23.08.2011 37 667 ± 464 (median 676; range 12–1 785) 9 000 ± 11 391 (median 4 662; range 19–47 352) 112 ± 101 (median 87; range 22–542) 37/0 1,22 0,13
26.08.2011 22 484 ± 334 (median 450; range 76–1 351) 5 365 ± 7 239 (median 2 351; range 76–27 581) 102 ± 87 (median 76; range 10–356) 22/0 1,97 0,32
98 ± 124 (median 56; range 14–481) 17/0 1,06 0,40
and might be helpful to parents, other videos either showed different conditions than classified or also contained misleading additional material, in particular regarding Sandifer syndrome. The main difficulty however was that these issues were not at all obvious to the user without medical knowledge. This is in line with previous publications concerning general internet based medical information [3] as well as YouTube as source of information for different medical conditions. A recent article rating 199 videos with information about nephrolithiasis found 58.3 % of the videos having useful and 18.1 % misleading information with universities’ channel videos providing the best overall information coverage [11]. The authors conclude that YouTube has a substantial amount of information on urolithiasis and in view of this, authoritative videos by trusted sources should be posted for dissemination of reliable information. On the other hand another article focusing on prostate cancer information found that YouTube is an inadequate source of prostate cancer information for patients [13]. Babamiri et al. looked for information on melanoma and found that available video clips contain information covering almost all aspects of melanoma directed predominately at the general public [2]. However, their study found 2 clips showing patients testifying a cure for melanoma through alternative therapies with no scientific basis. One current article focusing on movement disorders in adults like dystonia, tics, chorea or tremor demonstrated an excellent interrater agreement. However, rating 29 videos of movement disorders, 66 % were classified as psychogenic [12]. Another recent article evaluated YouTube as a research medium with respect to information, stigmata and misinformation surrounding epilepsy. Here, the authors identified persistent misinformation towards epilepsy among YouTube users [8]. This also holds true in our study, even though to a somewhat different extent concerning the analysed conditions. We are well aware that YouTube information is uncensored and uncontrolled and that in some instances jokes or even deliberately placed misleading information is a part of current culture in this medium. However, in our daily practice parents seek information in new media and sometimes are not able to realize the different intentions. Although the incidence of shuddering attacks has been reported to be low, there are rational arguments for an underestimation [14]. Even if the pathophysiological principle still remains unclear, shuddering attacks are considered a benign movement disorder which – after correct diagnosis – must not be treated [16]. The most important task is to confirm the diagnosis and prevent children from unnecessary treatment. However, no diagnostic tests are available, which means that this diagnosis is Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
still based mostly on clinical evaluation after ruling out serious conditions. In children where the referring practitioners or the parents worry about serious conditions, videos of similar movement disturbances might reassure the diagnosis. Due to the short duration and the sudden onset of this movement phenomenon it is often difficult to obtain videos of good quality. This was also true for the videos on YouTube which sometimes lasted longer than 2 min with only seconds of shuddering. With an average length of stay on a website of approximately 40 s for all users most videos might not be watched entirely. Additionally 35.3 % of the videos displayed different conditions other than shuddering, which does not qualify this condition for self management by parents via YouTube. Infantile spasms are one of the most serious epileptic syndromes demanding immediate treatment. These children have very characteristic sudden brief movements which enable a straightforward diagnosis by experts in most cases. Therefore we found the highest interrater agreement in this group. Again, some videos (25 %) were rated as definitely other conditions than infantile spasms. However, in selected videos the additional comments were helpful. A particular risk with YouTube videos of infantile spasms may be that parents could be erroneously reassured that their child´s events are not infantile spasms. This particularly applies to cases of “subtle” infantile spasms where clinical presentation is very mild and atypical [5]. Epilepsies with absence seizure are among the most common seizure disorders. This was also reflected by the number of hits according to the statistics provided by YouTube. Treatment of “classical” epilepsies with absence seizures is generally successful and prognosis is good in most children [4]. However, absence seizures might also occur in more serious epilepsies like Lennox-Gastaut syndrome or Dravet syndrome. Since in our search on YouTube we also found some videos concerning e. g. Dravet syndrome, this might lead to erroneous appraisal by the parents and sometimes unnecessary worries. Sandifer syndrome is a combination of gastro-oesophageal reflux disease with spastic torticollis and dystonic body movements with or without hiatal hernia. Interestingly, only few reports of this syndrome exist, which is not reflected by the fact that we found 37 videos on YouTube. Therefore Sandifer syndrome might be either under recognized or benign natural movements associated with mild gastro-oesophageal reflux are increasingly mislabeled under this classification. These were the videos with the largest non-agreement between all raters with Fleiss’ kappa of only 0.13. This might be due to the variability and different conceptions of the syndrome. In many cases
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Table 1 Detailled information on videos [classification on a 4 point Likert scale with categories: “definitely not” (0), “unlikely” (1), “probable” (2), “definite” (3) or “assessment not possible”; Fleiss’ Kappa is a measure for interrater reliability (details see statistics)].
Original Article 397
Limitations of the study
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We do not know much about the search strategies of the families. This holds true for the timing of (online) search as well as for search strategies or words used. We tried to re-enact a scenario with parents returning from e. g. an outpatient visit and trying to get further information about the condition of their child. However, many parents might have tried to retrieve information on their child’s condition even before the visit without using the same medical terminology we used for our search. In most instances we did not have information about the children’s medical condition except for those provided on YouTube. Most of all, information on medical background like extent, complexity and results of investigations was lacking. This might have led to some misjudgement of children’s medical condition by only rating videos. Another shortcoming might be that the interpretation of material and data is just based on expert assessment. We did not perform personal interviews with parents evaluating the impact of internet video information on management of their child.
Conclusion
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Our study showed that YouTube contains lots of videos and information regarding neurological disorders in children. Video quality was generally fair as was the interrater reliability in most categories. Whereas some of the available information might be helpful to patients and their parents, other information is misleading or might be even unsettling. Even if the interrater reliability was fair for the different conditions, we found a significant disagreement even for the most well defined disorders. Therefore video material on YouTube can generally not be considered as helpful for parents. Some paediatricians might use a list of helpful links but it must be remembered that the content of YouTube is continually changing. Since professional videos submitted to YouTube by paediatricians or even teaching hospitals were scarce, one possibility to improve the overall quality of information parents get when “consulting” YouTube could be a higher contribution of professional videos to web resources such as YouTube or watching selected videos together with the parents which might offer another possibility to overcome language barriers [7]. Another way may be professionally made internet resources with information for patients and parents [17].
Acknowledgements
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We thank Julia Borusiak for her assistance regarding data acquisition, Dr. Andrea Weidenfeld for her support concerning the statistical analysis of the data and Dr. Anita Munagapati as well as Dr. Uma Keller for revising the text as native English speakers.
Conflict of interest: Peter Borusiak has formerly received support from, has served as a speaker for and taken part in investigations for Novartis, Janssen Cilag, UCB, Desitin and Dibropharm. Daniel Tibussek has formerly served as a speaker for Desitin and UCB. Thomas Becher has formerly served as a speaker for Desitin and Allergan. The remaining authors and collaborators have no conflicts of interest. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. The first draft of the manuscript was written by Peter Borusiak and there was no honorarium, grant or other form of payment to anyone to produce the manuscript. Affiliations Department of Paediatrics, School of Medicine, Faculty of Health, HELIOS Hospital Wuppertal, Witten/Herdecke University, Wuppertal, Germany 2 Department of General Paediatrics, Neonatology and Paediatric Cardiology, University Children’s Hospital, Duesseldorf, Germany 3 Sana Hospital Duesseldorf, Centre of Child Neurology DuesseldorfGerresheim, Duesseldorf, Germany 4 HELIOS Children’s Hospital, Neonatology, Wuppertal, Germany 5 Department of Paediatrics, University Hospital Duesseldorf, Germany 1
References 1 Alexa web services [homepage on the Internet]. (http://www.alexa. com) Accessed: 04/03/2011 2 Babamiri K, Nassab RS. The availability and content analysis of melanoma information on YouTube. Plast Reconstr Surg 2010; 126: 51e–52e 3 Bartels U, Hargrave D, Lau L et al. Analyse pädiatrisch neuro-onkologischer Informationen in deutschsprachigen Internetseiten. Klin Padiatr 2003; 215: 352–357 4 Berg AT, Berkovic SF, Brodie MJ et al. Revised terminology and concepts for organization of seizures and epilepsies: Report of the ILAE Commission on Classification and Terminology, 2005–2009. Epilepsia 2010; 51: 676–685 5 Donat JF, Wright FS. Unusual Variants of Infantile Spasms. J Child Neurol 1991; 6: 313–318 6 Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics 1977; 33: 159–174 7 Langer T, Schaper K, Gupta S et al. Sprachbarrieren in der Betreuung von Patienten mit Migrationshintergrund – Ergebnisse einer Pilotstudie zu den Erfahrungen von Kinder- und Jugendärzten. Klin Padiatr 2013; 225: 96–103 8 Lo AS, Esser MJ, Gordon KE. YouTube: a gauge of public perception and awareness surrounding epilepsy. Epilepsy Behav 2010; 17: 541–545 9 Metrick ME, Ritter FJ, Gates JR et al. Non epileptic events in childhood. Epilepsia 1991; 32: 322–328 10 Sarasohn-Kahn J. The wisdom of patients: health care meets online social media.ihealth Reports, California Healthcare Foundation; 2010;Available at: http://www.chcf.org/topics/chronicdisease/index. cfm?itemID = 133631 Accessed: 06/17/2011 11 Sood A, Sarangi S, Pandey A et al. YouTube as a Source of Information on Kidney Stone Disease. Urology 2011; 77: 558–562 12 Stamelou M, Edwards MJ, Espay AJ et al. Movement disorders on YouTube – caveat spectator. N Engl J Med 2011; 365: 1160–1161 13 Steinberg PL, Wason S, Stern JM et al. YouTube as source of prostate cancer information. Urology 2010; 75: 619–622 14 Tibussek D, Karenfort M, Mayatepek E et al. Clinical reasoning: Shuddering attacks in infancy. Neurology 2008; 70: e38–e41 15 Uldall P, Alving J, Hansen LK et al. The misdiagnosis of epilepsy in children admitted to a tertiary epilepsy centre with paroxysmal events. Arch Dis Child 2006; 91: 219–221 16 Vanasse M, Bedard P, Anderman F. Shuddering attacks in children: an early clinical manifestation of essential tremor. Neurology 1976; 26: 1027–1030 17 Winkel A, Ückert F. Projekt KONI-internetbasierte Aufklärung für krebskranke Kinder im Alter von 8 bis 14 Jahren. Klin Padiatr 2011; 223 – P119 doi: 10.1055/s-0031-1273919
Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
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categorization of these videos was facilitated by additional information concerning test results or clinical outcome following intervention. This might be helpful for some patients or their parents when explaining these symptoms. In benign sleep myoclonus we found a fair interrater reliability. Despite this, there were some pitfalls in this category as well. Some videos were very hard to rate and some contained definitely other conditions than benign sleep myoclonus, e. g. epileptic myoclonic seizures.
YouTube as a Source of Information for Children with Paroxysmal Episodes
Authors
P. Borusiak1, T. Langer1, D. Tibussek2, T. Becher3, A. C. Jenke4, S. Cagnoli1, M. Karenfort5
Affiliations
Affiliation addresses are listed at the end of the article
Key words ▶ video ● ▶ internet ● ▶ epilepsy ● ▶ sandifer syndrome ● ▶ absence epilepsy ● ▶ shuddering attacks ●
Abstract
Zusammenfassung
Objective: Whereas to date the internet is a main source of information for many parents, there are no restrictions regarding data presentation. Thus, the aim of this study was to assess the quality of internet material concerning paroxysmal episodes. Study design: We rated videos on YouTube for several conditions like infantile spasms, absence seizures, Sandifer syndrome, sleep myoclonus, and shuddering attacks. Videos were classified into different categories of certainty of diagnosis according to expert opinion based on a 4 point Likert scale followed by calculation of interrater reliability. Also the quality of supplemental information was assessed, as well as whether videos were helpful from a neuropaediatrican’s point of view in counselling patients and their parents. Results: In sleep myoclonus, absences and infantile spasms correlation between title of videos and classification by expert opinion was good. There was more discrepancy with the videos concerning Sandifer syndrome and shuddering attacks. Interrater reliability was low for Sandifer syndrome, fair for absences, shuddering attacks and sleep myoclonus and moderate for infantile spasms. Some supplemental information was rated to be helpful but other information was found to be misleading or even unsettling for patients and their parents. Conclusions: We consider that video material on YouTube can generally not be considered as helpful for parents because of a significant disagreement between experts, even for the most well defined disorders in our study.
Hintergrund: Für viele Patienten und ihre Eltern dient heutzutage das Internet als wichtige Informationsquelle für Erkrankungen. Da die Informationen keiner fachlichen Kontrolle unterliegen, haben wir die Qualität frei zugänglicher Videos zu verschiedenen Symptomen und neuropädiatrischen Erkrankungen untersucht. Methode: Es wurden Videos auf YouTube beurteilt, die unter den Stichworten infantile Spasmen, Absencen, Schlafmyoklonien, Schauderattacken oder Sandifer-Syndrom zu finden waren. Mittels einer 4-stufigen Likert-Skala erfolgte eine Beurteilung hinsichtlich der Sicherheit der Diagnose, wobei anschließend auch die Variabilität der Beurteilungen berechnet wurde. Es erfolgte eine Bewertung der Zusatzinformationen auf der jeweiligen YouTube-Seite und eine Einschätzung, ob aus neuropädiatrischer Sicht diese Informationen als hilfreich für die Beratung der Patienten und Eltern eingeschätzt wurden. Ergebnisse: Für die Videos, betreffend Schlafmyoklonien, Absencen und infantile Spasmen, ergab sich eine gute Korrelation zwischen der Einordnung der Videos auf YouTube und der Beurteilung durch die Experten, wohingegen sich für Schauderattacken und Sandifer-Syndrom größere Diskrepanzen zeigten. Bei der Variabilität der Beurteilungen ergab sich eine gute Übereinstimmung für infantile Spasmen, eine relativ gute für Absencen, Schauderattacken und Schlafmyoklonien und nur eine mäßige für Sandifer-Syndrom. Einige Zusatzinformationen auf den jeweiligen Seiten wurden als hilfreich eingeschätzt, viele Informationen jedoch eher als irreführend oder auch potenziell beunruhigend. Schlussfolgerung: Nach unserer Untersuchung sind Videos auf YouTube nicht generell als hilfreich zu empfehlen, da eher eine zusätzliche Verunsicherung befürchtet werden muss. Wir empfehlen, die Videos möglichst zusammen mit den Eltern anzusehen und eine direkte Einschätzung abzugeben.
Schlüsselwörter ▶ Video ● ▶ Internet ● ▶ Epilepsie ● ▶ Sandifer-Syndrom ● ▶ Absence ● ▶ Schauderattacken ●
Bibliography DOI http://dx.doi.org/ 10.1055/s-0033-1353142 Published online: October 24, 2013 Klin Padiatr 2013; 225: 394–397 © Georg Thieme Verlag KG Stuttgart · New York ISSN 0300-8630 Correspondence Thomas Becher Sana Hospital Duesseldorf Centre of Child Neurology Duesseldorf-Gerresheim Graeulinger Strasse 120 40625 Duesseldorf Germany Tel.: + 49/177/3787 455 Fax: + 49/211/2800 980 [email protected]
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Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
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Downloaded by: University of Pennsylvania Libraries. Copyrighted material.
YouTube als Informationsquelle über Kinder mit paroxysmalen Episoden
Original Article 395
▼
The internet has become indispensable as source of information and a way to share personal experiences – even for parents of children and adolescents with (suspected) diseases. In fact, in many countries the internet is the number one source of health information [10]. On one hand this might complicate treatment and communication because of false or misleading information. On the other hand management might be facilitated if the obtained information meets the doctor’s approval. It is hardly possible to categorize or even rate all available information sites even if many initiatives either private or official try to certify trustworthy and reputable sources. YouTube is the third most popular website in the world behind www.google.com and www.facebook.com with more than 26 % of global internet users visiting youtube.com [1]. As a video-based source, it contains potentially important information for parents with children with strange motor phenomenon or suspected epileptic seizures. This includes conditions where diagnosis is sometimes challenging like infantile spasms, absence seizures, Sandifer syndrome, sleep myoclonus, and shuddering attacks [3]. In particular the non-epileptic stereotype motor movements of shuddering attacks, Sandifer syndrome and sleep myoclonus are often misdiagnosed. Confusion with tonic, myoclonic, and absence seizures and with West syndrome has been reported possibly leading to unnecessary anticonvulsive treatment [9, 15]. As a consequence, parents are seeking further information due to the common diagnostic challenges. The aim of our study was to assess whether videos of certain neurological conditions shown in the internet could be helpful from a neuropaediatrican’s point of view in counselling patients and their parents. Therefore, we performed an internet search on video material provided by sources like YouTube for 5 different conditions. Results were analysed for clinical relevance and correctness by 7 independent physicians. Interobserver reliability was assessed.
Methods
▼
All videos were collected from a German IP-address using www. youtube.com on 17th July 2011 using the search terms “shuddering attacks” and “infantile spasms” and from 17th August till 26th August 2011 for “sleep myoclonus”, “Sandifer syndrome” and “absence seizures”. All “hits” were then further analysed. We extracted information about the video’s URL on YouTube for future access, the title of the video, the number of hits, the date when the video was posted, the length of the video and the number of comments. Double posts were excluded. All remaining videos were then classified by the expert opinion of all the authors who are board certified paediatric neurologists (P.B., D.T., T.B., S.C., M.K.) or experienced in the treatment of neurological disorders in children (T.L., A.J.). The classification was done individually on a 4 point Likert scale with categories: “definitely not” (0), “unlikely” (1), “probable” (2), “definite” (3) or “assessment not possible” for correlation of title of the video and clinical diagnosis.
Statistics
▼
Data analysis was carried out according to a pre-established analysis plan. Mean value, standard deviation, median and range were calculated for the days online on YouTube, number of views and length of videos. We also calculated mean values for the
classification pertaining to the question whether the label of the condition on YouTube was consistent with the expert opinion. Fleiss’ kappa allows to assess interrater reliability between more than 2 raters allocating categorial ratings. It was calculated for each of the 5 video categories. As there is no general agreement of the significance of specific values we defined kappa from 0 to 0,20 as slight agreement, kappa from 0,21 to 0,40 as fair agreement, kappa from 0,41 to 0,60 as moderate agreement, kappa from 0,61 to 0,80 as substantial agreement and kappa from 0,81 to 1,00 as almost perfect agreement following Landis and Koch [6].
Results
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A search on YouTube performed on 17th July 2011 revealed 17 hits for “shuddering attacks” dealing with infants with this specific medical condition. The top 5 videos were seen more than 50 000 times. Looking for “absence seizures” we found 448 hits with more than 500 000 views. Further data concerning days on YouTube, number of views, length of videos as well as agreement between title of videos on YouTube and classification of authors ▶ Table 1. opinion and interrater reliability are provided in ● In sleep myoclonus, absences and infantile spasms agreement between title of videos on YouTube and classification of author’s opinion was quite good. On the other hand there was more disagreement with the videos concerning Sandifer syndrome and shuddering attacks. In some videos a fair judgement was very hard to make due to quality and/or duration of the video. Some videos were very short with the crucial scene right at the beginning whereas others lasted several minutes with the key scene somewhere in the middle or at the end. However, only the minority of videos (n = 9, 7.4 %) could not be rated due to very short duration or poor quality material. Most videos did not have additional uploader comments but some provided supplementary information which could be helpful to parents. On the other hand, in some cases the provided supplemental information was considered possibly misleading. For example, one comment on a video, headed “Benign Neonatal Sleep Myoclonus”, contained the following information: “So if your baby does this PLEASE do not let the doctors poke and do unnecessary testing ask them about this syndrome first and don't let doctors give them unnecessary medication to treat this syndrome because it will get worse and can possible hurt your child.”
Discussion
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There are diverging opinions concerning the usefulness of internet resources, especially YouTube, as source of medical information. With our study we attempted to add objective evidence to this debate providing the first quality/correctness analysis of internet videos about neuropaediatric movement disorders. Overall, there were only 3 videos by professional institutions among the top 121 videos. A further comparison – professional vs. amateur – was not possible due to this small number. Even if professional sites often provide more serious and profound information, most internet users prefer other sites. In addition, some of the professional sites have to stop their services due to financial reasons like www.wemove.org. Reflecting the public disagreement our results were also somewhat conflicting. Whereas many videos were classified correctly Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
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Introduction
396 Original Article
accessed no of videos assesed days on YouTube views
length of videos in seconds amateur/professional classification (mean) Fleiss’ Kappa
Shuddering
Infantile spasms
Absences
Sandifer
Sleep myoclonus
17.7.2011 17 947 ± 567 (median 1 073; range 143–1 783) 5 982 ± 10 797 (median 1 920; range 69–45 426)
17.07.2011 20 1 165 ± 316 (median 1 183; range 759–1 949) 41 228 ± 30 422 (median 34 865; range 13 797–131 871) 124 ± 89 (median 102; range 24–370) 19/1 1,67 0,49
17.08.2011 25 1 018 ± 356 (median 889; range 362–1 853) 54 700 ± 66 247 (median 24 171; range 5 595–268 788) 68 ± 58 (median 54; range 10–180) 23/2 1,69 0,32
23.08.2011 37 667 ± 464 (median 676; range 12–1 785) 9 000 ± 11 391 (median 4 662; range 19–47 352) 112 ± 101 (median 87; range 22–542) 37/0 1,22 0,13
26.08.2011 22 484 ± 334 (median 450; range 76–1 351) 5 365 ± 7 239 (median 2 351; range 76–27 581) 102 ± 87 (median 76; range 10–356) 22/0 1,97 0,32
98 ± 124 (median 56; range 14–481) 17/0 1,06 0,40
and might be helpful to parents, other videos either showed different conditions than classified or also contained misleading additional material, in particular regarding Sandifer syndrome. The main difficulty however was that these issues were not at all obvious to the user without medical knowledge. This is in line with previous publications concerning general internet based medical information [3] as well as YouTube as source of information for different medical conditions. A recent article rating 199 videos with information about nephrolithiasis found 58.3 % of the videos having useful and 18.1 % misleading information with universities’ channel videos providing the best overall information coverage [11]. The authors conclude that YouTube has a substantial amount of information on urolithiasis and in view of this, authoritative videos by trusted sources should be posted for dissemination of reliable information. On the other hand another article focusing on prostate cancer information found that YouTube is an inadequate source of prostate cancer information for patients [13]. Babamiri et al. looked for information on melanoma and found that available video clips contain information covering almost all aspects of melanoma directed predominately at the general public [2]. However, their study found 2 clips showing patients testifying a cure for melanoma through alternative therapies with no scientific basis. One current article focusing on movement disorders in adults like dystonia, tics, chorea or tremor demonstrated an excellent interrater agreement. However, rating 29 videos of movement disorders, 66 % were classified as psychogenic [12]. Another recent article evaluated YouTube as a research medium with respect to information, stigmata and misinformation surrounding epilepsy. Here, the authors identified persistent misinformation towards epilepsy among YouTube users [8]. This also holds true in our study, even though to a somewhat different extent concerning the analysed conditions. We are well aware that YouTube information is uncensored and uncontrolled and that in some instances jokes or even deliberately placed misleading information is a part of current culture in this medium. However, in our daily practice parents seek information in new media and sometimes are not able to realize the different intentions. Although the incidence of shuddering attacks has been reported to be low, there are rational arguments for an underestimation [14]. Even if the pathophysiological principle still remains unclear, shuddering attacks are considered a benign movement disorder which – after correct diagnosis – must not be treated [16]. The most important task is to confirm the diagnosis and prevent children from unnecessary treatment. However, no diagnostic tests are available, which means that this diagnosis is Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
still based mostly on clinical evaluation after ruling out serious conditions. In children where the referring practitioners or the parents worry about serious conditions, videos of similar movement disturbances might reassure the diagnosis. Due to the short duration and the sudden onset of this movement phenomenon it is often difficult to obtain videos of good quality. This was also true for the videos on YouTube which sometimes lasted longer than 2 min with only seconds of shuddering. With an average length of stay on a website of approximately 40 s for all users most videos might not be watched entirely. Additionally 35.3 % of the videos displayed different conditions other than shuddering, which does not qualify this condition for self management by parents via YouTube. Infantile spasms are one of the most serious epileptic syndromes demanding immediate treatment. These children have very characteristic sudden brief movements which enable a straightforward diagnosis by experts in most cases. Therefore we found the highest interrater agreement in this group. Again, some videos (25 %) were rated as definitely other conditions than infantile spasms. However, in selected videos the additional comments were helpful. A particular risk with YouTube videos of infantile spasms may be that parents could be erroneously reassured that their child´s events are not infantile spasms. This particularly applies to cases of “subtle” infantile spasms where clinical presentation is very mild and atypical [5]. Epilepsies with absence seizure are among the most common seizure disorders. This was also reflected by the number of hits according to the statistics provided by YouTube. Treatment of “classical” epilepsies with absence seizures is generally successful and prognosis is good in most children [4]. However, absence seizures might also occur in more serious epilepsies like Lennox-Gastaut syndrome or Dravet syndrome. Since in our search on YouTube we also found some videos concerning e. g. Dravet syndrome, this might lead to erroneous appraisal by the parents and sometimes unnecessary worries. Sandifer syndrome is a combination of gastro-oesophageal reflux disease with spastic torticollis and dystonic body movements with or without hiatal hernia. Interestingly, only few reports of this syndrome exist, which is not reflected by the fact that we found 37 videos on YouTube. Therefore Sandifer syndrome might be either under recognized or benign natural movements associated with mild gastro-oesophageal reflux are increasingly mislabeled under this classification. These were the videos with the largest non-agreement between all raters with Fleiss’ kappa of only 0.13. This might be due to the variability and different conceptions of the syndrome. In many cases
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Table 1 Detailled information on videos [classification on a 4 point Likert scale with categories: “definitely not” (0), “unlikely” (1), “probable” (2), “definite” (3) or “assessment not possible”; Fleiss’ Kappa is a measure for interrater reliability (details see statistics)].
Original Article 397
Limitations of the study
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We do not know much about the search strategies of the families. This holds true for the timing of (online) search as well as for search strategies or words used. We tried to re-enact a scenario with parents returning from e. g. an outpatient visit and trying to get further information about the condition of their child. However, many parents might have tried to retrieve information on their child’s condition even before the visit without using the same medical terminology we used for our search. In most instances we did not have information about the children’s medical condition except for those provided on YouTube. Most of all, information on medical background like extent, complexity and results of investigations was lacking. This might have led to some misjudgement of children’s medical condition by only rating videos. Another shortcoming might be that the interpretation of material and data is just based on expert assessment. We did not perform personal interviews with parents evaluating the impact of internet video information on management of their child.
Conclusion
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Our study showed that YouTube contains lots of videos and information regarding neurological disorders in children. Video quality was generally fair as was the interrater reliability in most categories. Whereas some of the available information might be helpful to patients and their parents, other information is misleading or might be even unsettling. Even if the interrater reliability was fair for the different conditions, we found a significant disagreement even for the most well defined disorders. Therefore video material on YouTube can generally not be considered as helpful for parents. Some paediatricians might use a list of helpful links but it must be remembered that the content of YouTube is continually changing. Since professional videos submitted to YouTube by paediatricians or even teaching hospitals were scarce, one possibility to improve the overall quality of information parents get when “consulting” YouTube could be a higher contribution of professional videos to web resources such as YouTube or watching selected videos together with the parents which might offer another possibility to overcome language barriers [7]. Another way may be professionally made internet resources with information for patients and parents [17].
Acknowledgements
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We thank Julia Borusiak for her assistance regarding data acquisition, Dr. Andrea Weidenfeld for her support concerning the statistical analysis of the data and Dr. Anita Munagapati as well as Dr. Uma Keller for revising the text as native English speakers.
Conflict of interest: Peter Borusiak has formerly received support from, has served as a speaker for and taken part in investigations for Novartis, Janssen Cilag, UCB, Desitin and Dibropharm. Daniel Tibussek has formerly served as a speaker for Desitin and UCB. Thomas Becher has formerly served as a speaker for Desitin and Allergan. The remaining authors and collaborators have no conflicts of interest. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. The first draft of the manuscript was written by Peter Borusiak and there was no honorarium, grant or other form of payment to anyone to produce the manuscript. Affiliations Department of Paediatrics, School of Medicine, Faculty of Health, HELIOS Hospital Wuppertal, Witten/Herdecke University, Wuppertal, Germany 2 Department of General Paediatrics, Neonatology and Paediatric Cardiology, University Children’s Hospital, Duesseldorf, Germany 3 Sana Hospital Duesseldorf, Centre of Child Neurology DuesseldorfGerresheim, Duesseldorf, Germany 4 HELIOS Children’s Hospital, Neonatology, Wuppertal, Germany 5 Department of Paediatrics, University Hospital Duesseldorf, Germany 1
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Borusiak P et al. YouTube as a source … Klin Padiatr 2013; 225: 394–397
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categorization of these videos was facilitated by additional information concerning test results or clinical outcome following intervention. This might be helpful for some patients or their parents when explaining these symptoms. In benign sleep myoclonus we found a fair interrater reliability. Despite this, there were some pitfalls in this category as well. Some videos were very hard to rate and some contained definitely other conditions than benign sleep myoclonus, e. g. epileptic myoclonic seizures.
