YouTube as a Source of Information on Lipedema: Property,Quality,and Reliability Assessment

Abstract

Background/Aim:

YouTube provides information on several health-conditions including lipedema. The aim of this study was to investigate the properties, quality, and quantity of YouTube videos on lipedema.

Methods:

We explored YouTube using the key word lipedema and the initial top 50 videos were included to review. The properties comprising informers, target, and domains of videos covering number of views, likes, dislikes, duration, viewing rate (VR), and video power index (VPI) were recorded. A modified DISCERN tool and global quality scale (GQS) were used to assess the reliability and quality of videos, respectively.

Results:

The top 50 videos had a mean of 35,805 views, 282 likes, 12 dislikes, and 30 comments. The mean VPI (96.4) and VR (63.8%) were high. The videos were generally uploaded by health professionals for patient/public and health professional targets with the same ratio (50%). The majority of video contents was related to general information (68%) followed by surgical treatment (62%). Only a small ratio of their content (22%) was about nonsurgical management. The reliability and quality of the videos were intermediate to low. The median DISCERN and GQS scores were higher in the videos uploaded by health professional group compared with nonhealth professionals, but the number of views, VPI, and VR were similar between the groups with regard to the source.

Conclusion:

YouTube videos on lipedema are mostly provided by health professionals targeting both public/patients and health care providers but the content is limited and the quality and reliability of them were low to intermediate. Therefore, the lipedema specialists are suggested to work together to create up-to-date, high-quality, accessible online educational content to meet the needs of both patients/public and the health professionals. In addition, control mechanisms and careful peer reviewing of the videos informed by nonhealth professionals are warranted to avoid misleading information.

Introduction

Lipedema is a chronic and debilitating disease characterized by disproportionate symmetrical adipose tissue deposition usually in the lower extremities, which almost exclusively affects women.^1,2 Approximately 11% of the female population worldwide, suffer from lipedema. Clinical features of lipedema are tired, heavy legs, tenderness, and easy bruising at the affected site, which often causes reduced ambulation, pain, and decreased social activity as well as psychological problems.^1–4

Diagnosis and management of lipedema is a challenging issue for health professionals. Although it is a common chronic disease, awareness and level of knowledge about lipedema is low among clinicians and the public.^4,5 Lipedema is commonly misdiagnosed as obesity or lymphedema and a great proportion of the patients cannot get adequate diagnosis and treatment.

Management of lipedema involves both conservative and surgical approaches.^2–4 The targets of the management are to improve the signs and symptoms, to prevent/treat potential complications such as lymphedema, gait problems, obesity, and psychosocial issues and to maintain a healthy life style.^3,4 Bariatric surgery for obesity in needed patients and lymph-sparing liposuction are the favored surgical treatment methods.^2–4 Nonsurgical methods such as manual lymphatic drainage, intermittent pneumatic compression, compression stockings, exercise, skin care, and diet were also used in the literature,^1–3 but a paradigm shift and a new consensus on diagnosis and treatment of lipedema has recently been published indicating the importance of understanding the needs of patients, and individualized multidisciplinary treatment approaches.⁴

The internet is the most popular source of health-related information as it provides immediate, easily accessible, updated, and interactive information.^5,6 Especially individuals with chronic health problems are increasingly browsing the internet to seek information or to manage their conditions.^7,8 YouTube, a well-known online video-sharing platform, is one of the world's most popular internet site that provides information on several health conditions including lipedema.^7,9

Assessing the availability and accuracy of online health information is a rapidly developing area of study for academic researchers.^6,7,9,10 Several studies have evaluated YouTube content in various medical topics.^7,11–22 However, videos shared on YouTube are not subjected to peer-reviewing and the accuracy and reliability of the health information on YouTube are questionable.^7,9,10,23 Inaccurate and poor quality health information can be misleading and harmful to both patients and health care professionals. To the best of our knowledge, YouTube videos on lipedema have not yet been evaluated with regard to properties, quality, and reliability. The aim of this study was to investigate the characteristics, quality, and reliability of YouTube videos on lipedema.

Methods

Search strategy and selection of videos

We searched YouTube using the key word “lipedema” and sorted the videos using the filter “sort by view count” on June 18, 2021 and the mostly viewed 50 videos were included to review. The rationale for reviewing the first 50 videos was that, majority of the online health information seekers are reported not to scan more than the first 2 pages of citations.^5,11 YouTube has a novel design called as “infinite scroll,” in other words, the server continuously adds new videos at the bottom of the page as the user scrolls. In the older design of YouTube, one page included 20 videos therefore 50 videos occupied 2.5 pages. Several recent studies evaluating quality of health-related YouTube videos have reviewed the top 50 videos.^11–15 The first 50 videos representing 2.5 pages of videos on the older layout that fulfilled the requirement “having lipedema in the title or URL” were included. Videos were excluded if they were irrelevant videos, duplicate videos, and videos in a language other than English. The included videos were saved in a playlist and evaluated for reliability, quality, and other characteristics regarding technical parameters and popularity.

Ethics statement

Institutional Review Board ethics approval was unnecessary for this study, as only the public access data were used.

Video parameters

After saving the selected videos in a playlist, number of dates since upload, duration, number of views, comments, number of likes, and number of dislikes of each video were recorded. Using these data, video power index (VPI), viewer's interaction (VI), and viewing rate (VR) were calculated for popularity of each video.

VPI was calculated using the formula: [number of likes/(number of likes + dislikes)] × 100^16,17 and the VI was calculated using the formula: [(number of likes − number of dislikes)/number of views].^9,18,19 As the videos were uploaded on different dates, the VR was calculated by dividing the number of views by the number of days since the video was uploaded.

Target audience, video source, and content

The source (privately practicing health professional/academic institution/TV channel/patient channel/other nonprofessional channel); informer/informers (health professionals comprising physician, academician, and nonphysician health professional/nonhealth professionals consisting patient, TV presenter, other nonhealth professional individuals), target population (educational videos for health care professionals/information videos for patients/public), and content (general information comprising definition and clinical characteristics of lipedema/personal experience/advanced academic information/surgical management/nonsurgical management) of the videos were also determined.

Video reliability and quality

Each video was independently evaluated for reliability and quality by two lymphedema/lipedema specialists (who are experienced and certified for more than 10 years) independently. For this purpose, the modified DISCERN tool and the global quality scale (GQS) were used, respectively.^10,20,21,24 The modified DISCERN tool is an adaptation of the original DISCERN survey used for assessment of written or online health information. It comprises five “yes” or “no” questions addressing the clarity, reliability, bias/balance, provision of additional information sources and if the areas of uncertainty are mentioned. For each aspect addressed, videos receive 1 point, with possible scores ranging from 0 to 5 points.^10,24

The overall quality of each video was assessed using the 5-point GQS, which is a tool previously used to rate the quality and usefulness of online information in numerous YouTube studies.^20,21 The GQS is a five-item Likert scale to evaluate the usefulness of the video based on the quality and flow of information.¹⁰ This scale allows investigators to classify the videos as: low (GQS ≥4), intermediate (GQS = 3), and high quality (GQS ≤2).²¹ Higher scores of both the modified DISCERN and the GQS demonstrate higher reliability and quality of the assessed video, respectively.^10,21,24

We have evaluated the relationship between the video features and the DISCERN and GQS scores of all videos.

Statistical analysis

The statistical analysis was conducted using IBM SPSS Statistics for Windows, version 22.0 (IBM Corp., Armonk, NY). The normality of the data was assessed using the Shapiro–Wilk test. Descriptive statistics were reported including medians [first quartile–third quartile] for continuous variables and count and percentages for categorical variables. Mann–Whitney U test was used to compare two groups for the numerical variables. Fisher's exact test was used to compare groups for categorical variables, whereas correlation analysis was performed using Spearman correlation analysis. Interrater consistency was assessed using the kappa coefficient and Cronbach's alpha. A two-tailed p-value <0.05 was considered statistically significant.

Results

None of the selected 50 videos matched with the exclusion criteria; therefore, all of them were included. The reviewed top 50 videos had a median of 11,317 views, 118 likes, 3.5 dislikes, 10.9 VR value and 9 comments. The median VPI (96.9) was high. The median duration of the videos was 10.76 minutes ranging from 1.12 to 87.13 minutes. The number of views ranged from 1446 to 430,707. In majority of the videos (72%), the informer was a health professional (mostly physician) dealing with lipedema and most of the (38%) videos were shared on a channel owned by a health professional, followed by academic institutions (36%). Half of the videos were uploaded for patients/public as a target population, and the other half consisted of educational videos for health professionals.

With regard to content, most of the videos addressed general information about clinical characteristics of lipedema (68%), followed by surgical treatment (62%) of lipedema, but most of them were generally mixed with different topics. The nonsurgical conservative management, psychosocial support, and/or self-care education were mentioned in just 28% of the videos. Descriptive statistics of the video characteristics are given in Table 1.

Table 1.

Descriptive Properties of the Videos

Features of the videos	Mean + SD	Median	Q1–Q3
Number of days since uploaded	1228.1 ± 750.88	1114	561–1845
Duration, minutes	16.02 ± 17.19	10.76	5.06–21.09
Number of views	35805.96 ± 73541.97	11,317	4901–28,650
Number of comments	30.6 ± 48.75	9	2–35
Video power index	96.4 ± 3.18	96.9	95.71–98.63
Viewing rate	63.8 ± 199.4	10.92	4.32–25.34
Modified DISCERN score	3.05 ± 1.1	3	2–4
GQS score	2.79 ± 0.84	3	2–3
		Number	Percent
Informer
Health professional		36	72
Nonhealth professional		14	28
Source
Health professional channel		19	38
Academic institution		18	36
TV channel		7	14
Patient channel/others		6	12
Content
General information		34	68
Personal experience		20	40
Academic information		10	20
Surgical management		31	62
Nonsurgical management		14	28
Target population
For health professionals		25	50
For patients and public		25	50
Quality classification by GQS scores
High quality (GQS >4)		11	22
Intermediate quality (GQS = 3)		24	48
Low quality (GQS <2)		15	30

Q1–Q3: first quartile–third quartile.

GQS, global quality scale; SD, standard deviation.

The most popular video with highest number of views and highest VR was uploaded by a private health professional channel, the informer was a surgeon physician providing information about surgical treatment of lipedema and the target population of the video was patients. It was watched 430,707 times and the VR was 1244.8. In other words, on average, it was watched more than a 1000 times in each day since it was uploaded.

With regard to reliability and quality, the mean value of the modified DISCERN scores given by two evaluators were calculated to find an ultimate score and the same calculation was made for the GQS scores for each video. Those ultimate scores were used for group comparisons. There was an excellent interrater agreement and very strong compliance between the two evaluators regarding the modified DISCERN (α = 0.876 rs = 0.781) and GQS scores (α = 0.718; rs = 0.549). There was no statistically significant difference between the evaluators regarding the median scores of the modified DISCERN (p = 0.117) and the GQS (p = 0.365). The median modified DISCERN scores and GQS scores of the videos rated by both evaluators was 3 (range 1–5), which indicated intermediate. According to GQS scores 30% (n = 15), 48% (n = 24) and 22% (n = 11) of the videos were qualified as poor, intermediate, and high quality, respectively (Table 1).

The two groups of videos regarding the target population (Group 1t: for health professionals, Group 2t: for patients and public) were compared for the scores of modified DISCERN and GQS, as well as for the video features. Median duration, number of views and the modified DISCERN scores of the videos that were uploaded to inform health professionals were significantly higher than the videos uploaded for patients/public (p < 0.05). The distribution of qualification according to GQS scores and video characteristic in regard to target population are shown in Table 2. The number of videos in regard to quality classification, was statistically similar between the groups.

Table 2.

Comparison of Video Characteristics According to the Target Population Category

	For health professionals (n = 25), median (min–max) ^a	For patients and public (n = 25), median (min–max) ^a	p
Duration, minutes	16.15 (9.58–24.33)	5.58 (4.09–11.4)	0.000
Number of views	7059 (4658–19,356)	13,483 (6031–29,358)	0.039
Video power index	96.77 (96.21–98.63)	97.02 (95.22–98.61)	0.760
Viewing rate	10.01 (3.47–25.31)	14.62 (5.33–25.34)	0.068
GQS score, n	3 (2.5–4)	2.5 (2–3)	0.097
Quality classification, n
High quality (GQS >4)	9 (81.8%)	2 (18.2%)
Intermediate quality (GQS = 3)	19 (79.2%)	5 (20.8%)	0.176^b
Low quality (GQS <2)	8 (53.3%)	7 (46.7%)
DISCERN score	4 (3–4.5)	2.5 (2–3)	0.001

Bold values indicate statistical significance.

Median (first quartile–third quartile).

Fisher's exact test, p < 0.05.

The two groups of videos regarding the informer type (Group 1i: health professionals, Group 2i: patients or other individuals) were also compared for the aforementioned variables. The median of the modified DISCERN and GQS scores of the videos with a health professional informer were significantly higher than those in the videos with a nonhealth professional informer (p < 0.05; Table 3). In addition, the number of high qualified videos according to GQS scores was significantly higher in the videos uploaded by health professionals than in the other group. The number of views and VR were relatively higher for the nonhealth professional source but the difference was not statistically significant.

Table 3.

Comparison of Video Characteristics According to the Informer Category

	Health professional (n = 36), median (min–max) ^a	Nonhealth professional (n = 14), median (min–max) ^a	p
Duration, minutes	12.92 (5.24–21.56)	6.37 (3.49–11.4)	0.160
Number of views	7740.5 (4310.5–31376.5)	12896.5 (7264–21,303)	0.387
Video power index	96.9 (95.92–98.43)	96.78 (95.22–98.65)	0.829
Viewing rate	10.92 (3.42–28.05)	12.43 (5.33–19.61)	0.762
GQS score	3 (2.5–3.25)	2.25 (2–3)	0.043
Quality classification, n	10 (90.9%)	1 (9.1%)	0.008 ^b
High quality (GQS >4)	9 (37.5%)	15 (62.5%)
Intermediate quality (GQS = 3)	6 (40%)	9 (60%)
Low quality (GQS <2)
DISCERN score	3.5 (2.5–4.5)	2.5 (2–3)	0.025

Bold values indicate statistical significance.

Median (first quartile–third quartile).

Fisher's exact test, p < 0.05.

We conducted a correlation analysis to examine the relationship between the reliability and quality scores of the videos, and the overall video characteristics. According to the correlation analysis we demonstrated that the DISCERN score was significantly associated with the GQS score (r = 0.729), but none of the video properties except duration was related to the reliability (DISCERN) and the quality (GQS) scores. The correlation coefficients between the quality and reliability scores and the video characteristics are given in Table 4.

Table 4.

Correlation Coefficients of the Reliability and Quality Scores of the Videos and the Overall Video Characteristics

	Mean GQS scores	Mean DISCERN scores
Duration, minutes	r: 0.397 p: 0.004	r: 0.626 p: <0.001
Number of days since uploaded	r: −0.025p: 0.861	r: −0.115p: 0.425
Number of views	r: 0.168p: 0.244	r: 0.004p: 0.977
Number of comments	r: 0.149p: 0.303	r: −0.002p: 0.987
Number of likes	r: 0.218p: 0.129	r: 0.112p: 0.437
Number of dislikes	r: 0.175p: 0.224	r: 0.075p: 0.607
Video power index	r: −0.081p: 0.577	r: −0.001p: 0.992
Viewer interaction	r: 0.052p: 0.719	r: 0.223p: 0.120
Viewing rate	r: 0.132p: 0.360	r: 0.026p: 0.859
GQS	—	r: 0.682 p: <0.001

Bold values indicate statistical significance.

Discussion

This study indicated that majority of the lipedema videos on YouTube were uploaded by health professionals and the contents were commonly about general information on disease, followed by surgical management of lipedema. The sources were generally professional channel of physicians and academic institutions. The ratio of the videos with regard to target population (health professionals vs. patients/public) was half to half. We also determined that the quality and reliability of lipedema-related information offered on YouTube was generally intermediate to low. The duration of videos for health professionals was longer and more reliable but the number of views was less than the videos that targeted public/patients. Although the reliability and quality were higher in the videos uploaded by health professionals, the number of views, VPI, and VR were similar with the videos informed by nonhealth professionals.

The research on lipedema is relatively limited and the diagnostic and therapeutic guidelines are lacking. Therefore clinician and health professionals lack a strong enough evidence base for their practice in the diagnosis and management of lipedema. In addition, the awareness of the public on lipedema condition is not sufficient.^1–4 YouTube videos providing health information and advices can contribute to health care decisions and education/information of the users. Accurate and reliable medical information obtained from the YouTube can be illuminating, reassuring, educational, and helpful.^7,9,10 However, the sufficiency and accuracy of the video contents raise some concerns as they are not peer-reviewed and not supervised. In addition, the contents of video especially informed by patients/public may not be objective and may mislead the patients.^10,23

There are several YouTube videos on different health conditions.^7,22 Most of the previous studies^19,22 have reported higher rates of health care professionals as sources of information, but some of the reports indicated high ratio of nonhealth professionals informing about different health problems.^17,18 Our findings are in agreement with the results of previous studies of YouTube videos on different health conditions that the quality of content and information in lipedema videos are generally moderate to low.^12,17–19 Similar to our study, highest scores of reliability and quality were observed in videos uploaded by health professionals from academic institutions.^{11–17,21,22} In addition, the provided information by the patients may have a risk of misleading the public and patients with lipedema as they are less reliable than the videos uploaded by health-professionals.^23,24 These and our studies have shown the information to have variable quality and reliability according to the topics.

Nevertheless the videos uploaded from a nonprofessional source tended to be more popularly viewed despite having low quality and reliability, as confirmed by our data.^17,18 Although the reliability and quality scores were higher in videos that are uploaded by health professionals in this study, number of views, VR, and VPI, indicating popularity were similar to the videos sourced by nonhealth professionals. These results indicate that the quality of these videos uploaded by health professionals may not be sufficient for the public or patients, confirming the previous results in the literature.^{11,12,14,17,25} The other reasons may be the complexity of medical language and inability of patients to discern the accurate, reliable, and qualified information. Therefore, the health professionals may need to create comprehensive videos using simplified language in an attempt to make the accurate information given more accessible.^7,23

Surprisingly the quality and reliability scores of videos did not correlated with video characteristics, which may indicate that target populations could not make a distinction between accurate/inaccurate and high/low-qualified medical information on YouTube. But various studies in the literature reported that useless videos were more popular than useful ones.^{12,17,22,24,25} Considering these points, the health care providers need to advise their patients to check the source of the online information and direct them to the appropriate informers.

According to our data information on YouTube regarding lipedema, the content was generally based on clinical characteristics and surgical management. But recent data indicated that surgical procedures like liposuction was not an initial and basic therapeutic option for treating lipedema, especially patients with obesity.⁴ Despite being poorly discussed on YouTube lipedema videos, self-management techniques such as weight control, physical activity, stress reduction methods, and healthy life style are the cornerstone of lipedema treatment.^1,4

As majority of the patients with lipedema are overweight/obese, weight control as a part of conservative management should be emphasized in videos to offer the best treatment to patients with lipedema. Patients with lipedema should receive a holistic assessment that does not just focus on the diagnostic and medical aspects of the disease but also considers the impact on daily functioning. Optimizing daily functioning and increasing physical activity along with sustainable healthy life style and assuming a leading role in self-management and self-efficacy should be the mainstay of treatment in patients with lipedema. In addition, a comprehensive understanding of pain as an overreaction of stress system will allow the patients to develop further strategies for pain relief by relieving stress.^1,4 All these points need to be considered in the videos to help the clinicians' decision making in the management of this chronic disease. In this regard health professionals have to pay close attention to the individual concerns of the patients with lipedema, when preparing a video.

There are several videos describing lipedema patients' condition and feelings based on their personal experience. As every patient with lipedema may have different characteristics of the disease, videos based on personal experience may have the disadvantage of providing potentially inaccurate information and misleading. The patients/public and health professionals may have different expectations regarding video content.^7,10 In our study we determined that the videos prepared for public and patients had shorter duration, more number of views, and were more reliable than the videos targeting the health professional population. Policy makers should be encouraged to develop strategies and regulations to peer-review and hinder the spread of misleading information. Videos for patients/public need to contain education and information for awareness of lipedema, and self-management strategies ensuring the provision of motivating, accurate, and reliable information.

The main limitation of our study was that it analyzed 50 YouTube videos identified by the use of the key word “lipedema.” However, previous studies indicated that most people do not peruse more than one or two pages of search results, reviewing only the information they encounter first.^9,12–17 As another limitation, the data collected on a single day might have affected the results and inhibit to generalize our results for other videos that are uploaded after this specific timeline. As there is continuous uploading of high numbers of videos on lipedema, the flow of information on internet changes on a day-to-day basis.

We believe that our and future studies that continue to examine the quality and reliability of new information being uploaded on the platform will further guide content informers and help to take in considerations of providing a more holistic view for lipedema topic. The search of YouTube for lipedema videos only in English language may be another limitation. Despite these limitations, as a first study in the literature, our results bring a perspective to the characteristics, quality, and reliability of YouTube videos on lipedema. In addition, the analysis of the videos by two experienced specialists with a high interrater agreement strengthens our data.

In conclusion the YouTube videos on lipedema are mostly provided by health professionals targeting both public/patients and health care providers with a similar ratio. The quality and reliability of information in videos on lipedema was low to intermediate, and only a small ratio of their content was about nonsurgical management. Therefore, lipedema specialists are suggested to work together to create up-to-date, high-quality, accessible online educational content to meet the needs of both patients/public and the health professionals. The control mechanisms, evaluation, and careful peer-reviewing of the videos informed by nonhealth professionals, and improvement in terms of content, quality, and reliability are also warranted. We believe that the results of this study indicating the properties, quality, and reliability of YouTube videos on lipedema will help to develop strategies to improve the quality, reliability, and content of these videos, and consequently to increase the quality of care and eventually enhance the quality of life of the patients suffering from lipedema.

Footnotes

Authors' Contributions

Author 1 (E.E.Ö.): Conceptualization (supporting); methodology (leading), writing—original draft (leading).

Author 2 (P.B.): Conceptualization (leading); writing—original draft (supporting); methodology (supporting); writing—review and editing (leading).

Author 3 (G.M.C.): Conceptualizing (supporting); methodology (supporting); writing—review and editing (supporting).

Author 4 (M.M.U.): Software (leading); formal analysis (leading) and review (supporting).

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

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