10.5826/dpc.1203a143
Introduction: Psoriasis significantly affects the patients’ quality of life, which often leads patients to seek online information about this disease.
Objectives: To explore the habits of patients with psoriasis related to their use of SM and the internet to obtain information about their disease.
Methods: 1,520 patients completed the survey and the Dermatology Life Quality Index (DLQI) questionnaire. The Psoriasis Area Severity Index scores (PASI) and clinical data of the patients were recorded by their physicians.
Results: Of the 1,114 patients that reported using social media (SM) and the internet, 48.38% regularly and 31.14% sometimes resorted to obtain information about psoriasis. The use of SM and the internet for psoriasis was statistically significantly higher among young people (p=0.000), those with university or higher education (p=0.009), higher DLQI (p=0.000) and PASI (p=0.011) scores, facial (p=0.050), scalp (p=0.032), hand (p=0.048), genital (p=0.001) and inverse (p=0.000) involvement, and arthralgia/arthritis (p=0.006). The participants mostly used the Google (86%) and Facebook (%41). More than half the participants (62.8%) expected dermatologists to inform society that psoriasis is not contagious.
Conclusion: The internet and SM being widely available and offering substantial information to be easily accessed make it very attractive for patients to use these platforms to investigate diseases, including psoriasis. If what is presented on SM conflicts with what the physician says, patients mostly trust the latter, but at the same time, they tend not to share the results of their online inquiries with their physicians.
text/xml
2160-9381
2012
en
Erkan Alpsoy
https://creativecommons.org/licenses/by-nc/4.0
Dermatology Practical & Conceptual
habit
Habits of using social media and the internet in psoriasis patients
Text.Serial.Journal
https://dpcj.org/index.php/dpc
Original Article
2022-07-28
2021-09-04
2022-07-28
2022-09-15
e2022143
Dermatol Pract Concept
Introduction: Psoriasis significantly affects the patients’ quality of life, which often leads patients to seek online information about this disease.
Objectives: To explore the habits of patients with psoriasis related to their use of SM and the internet to obtain information about their disease.
Methods: 1,520 patients completed the survey and the Dermatology Life Quality Index (DLQI) questionnaire. The Psoriasis Area Severity Index scores (PASI) and clinical data of the patients were recorded by their physicians.
Results: Of the 1,114 patients that reported using social media (SM) and the internet, 48.38% regularly and 31.14% sometimes resorted to obtain information about psoriasis. The use of SM and the internet for psoriasis was statistically significantly higher among young people (p=0.000), those with university or higher education (p=0.009), higher DLQI (p=0.000) and PASI (p=0.011) scores, facial (p=0.050), scalp (p=0.032), hand (p=0.048), genital (p=0.001) and inverse (p=0.000) involvement, and arthralgia/arthritis (p=0.006). The participants mostly used the Google (86%) and Facebook (%41). More than half the participants (62.8%) expected dermatologists to inform society that psoriasis is not contagious.
Conclusion: The internet and SM being widely available and offering substantial information to be easily accessed make it very attractive for patients to use these platforms to investigate diseases, including psoriasis. If what is presented on SM conflicts with what the physician says, patients mostly trust the latter, but at the same time, they tend not to share the results of their online inquiries with their physicians.
Erkan Alpsoy
2022/07/28
10.5826/dpc.1203a143
e2022143
Akdeniz University, Faculty of Medicine, Department of Dermatological and Venereal Diseases, Antalya, Turkey
2160-9381
habit
en
e2022143
Habits of using social media and the internet in psoriasis patients
https://dpcj.org/index.php/dpc/article/download/2012/1691
        Habits of Using Social Media and the Internet
                     in Psoriasis Patients
        Melek Aslan Kayıran1, Ayşe Serap Karadağ2, İlteriş Oğuz Topal3, Esra Adışen4,
   Sevilay Kılıç5, Nuray Keskin4, Asude Kara Polat6, Bengü Çevirgen Cemil7, Mualla Polat8,
         Oğuz Yılmaz9, Hilal Ayvaz10, Filiz Topaloğlu Demir11, Sezgi Sarıkaya Solak12,
         Derya Uçmak13, Mehmet Salih Gürel1, Sema Aytekin14, Algün Polat Ekinci15,
    Kübra Nursel Bölük15, Neslihan Şendur16, Tuğba Özkök Akbulut17, Günseli Öztürk18,
                                  Ayda Acar18, Erkan Alpsoy9


 1 İstanbul Medeniyet University, Göztepe Prof Dr. Süleyman Yalçın City Hospital, Department of Dermatological and Venereal Diseases
 2 Ataşehir Memorial Hospital, Department of Dermatological and Venereal Diseases
 3 Health Sciences University, Prof. Dr. Cemil Taşçıoğlu Hospital, Department of Dermatological and Venereal Diseases
 4 Gazi University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
 5 Çanakkale 18 Mart University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
 6 Health Sciences University, İstanbul Training and Research Hospital, Department of Dermatological and Venereal Diseases
 7 Health Sciences University, Dışkapı Yıldırım Beyazıt Training and Research Hospital, Department of Dermatological and Venereal Diseases
 8 Bolu Abant İzzet Baysal University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
 9 Akdeniz University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
10 Süleyman Demirel University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
11 İstanbul Medipol University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
12 Trakya University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
13 Dicle University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
14 Health Sciences University, Haydarpaşa Training and Research Hospital Faculty of Medicine, Department of Dermatological and Venereal
    Diseases
15 İstanbul University, İstanbul Faculty of Medicine, Department of Dermatological and Venereal Diseases
16 Adnan Menderes University, Faculty of Medicine, Department of Dermatological and Venereal Diseases
17 Health Sciences University, Haseki Training and Research Hospital, Department of Dermatological and Venereal Diseases
18 Ege University, Faculty of Medicine, Department of Dermatological and Venereal Diseases



Key words: psoriasis, social media, internet, habit
Citation: Aslan Kayıran M, Karadağ AS, Oğuz Topal I, et al. Habits of using social media and the internet in psoriasis patients.
Dermatol Pract Concept. 2022;12(3):e2022143. DOI: https://doi.org/10.5826/dpc.1203a143
Accepted: December 9, 2021; Published: July 2022
Copyright: ©2022 Aslan Kayıran et al. This is an open-access article distributed under the terms of the Creative Commons
Attribution-NonCommercial License (BY-NC-4.0), https://creativecommons.org/licenses/by-nc/4.0/, which permits unrestricted
noncommercial use, distribution, and reproduction in any medium, provided the original authors and source are credited.
Funding: None.
Competing interests: None.
Authorship: All authors have contributed significantly to this publication.
Corresponding author: Melek Aslan Kayıran, MD, Eğitim Mah, Kadıköy, İstanbul, 34722, E-mail: melekaslan@gmail.com




Original Article | Dermatol Pract Concept. 2022;12(3):e2022143                                                                          1
    ABSTRACT         Introduction: Psoriasis significantly affects the patients quality of life, which often leads patients to
                     seek online information about this disease.
                     Objectives: To explore the habits of patients with psoriasis related to their use of social media (SM)
                     and the internet to obtain information about their disease.
                     Methods: 1,520 patients completed the survey and the Dermatology Life Quality Index (DLQI)
                     ­questionnaire. The Psoriasis Area Severity Index scores (PASI) and clinical data of the patients were
                      recorded by their physicians.
                     Results: Of the 1,114 patients that reported using SM and internet, 48.38% regularly and 31.14%
                     sometimes resorted to obtain information about psoriasis. The use of SM and internet for psoriasis
                     was statistically significantly higher among young people (P = 0.000), those with university or higher
                     education (P = 0.009), higher DLQI (P = 0.000) and PASI (P = 0.011) scores, facial (P = 0.050),
                     scalp (P = 0.032), hand (P = 0.048), genital (P = 0.001) and inverse (P = 0.000) involvement, and
                     arthralgia/arthritis (P = 0.006). The participants mostly used the Google (86%) and Facebook (41%).
                     More than half of the participants (62.8%) expected dermatologists to inform society that psoriasis
                     is not contagious.
                     Conclusions: Internet and SM being widely available and offering substantial information to be easily
                     accessed make it very attractive for patients to use these platforms to investigate diseases, including pso-
                     riasis. If what is presented on SM conflicts with what the physician says, patients mostly trust the latter,
                     but at the same time, they tend not to share the results of their online inquiries with their physicians.




Introduction                                                      Objectives
Psoriasis is a chronic systemic inflammatory disease seen at      This study aimed to explore the habits of patients with pso-
a rate of 1-3% across the world [1]. Sufferers may experi-        riasis related to their use of SM and the internet to obtain
ence itching, burning and pain sensation, and restrictions        information about their disease, methods they used, whether
in social life, which reduce their quality of life [2]. Social    they followed programs concerning the disease available on
media (SM) comprises internet-based communication tools           media outlets, whether they read related brochures, and their
that have entered people lives very quickly [3]. It is uti-       recommendations to dermatologists and dermatological as-
lized for many different purposes, such as accessing edu-         sociations concerning the use of SM related to psoriasis.
cational tools and creating educational resources, creating
campaigns to reach the public, and even inviting patients         Methods
to participate in clinical trials or online surveys [3]. To-
day, access to information through technology tools has           Patients
become extremely easy and fast. As in every subject, the          The study included voluntary literate psoriasis patients over
internet has become almost the first source of reference for      the age of 18 years and who were followed in the psoria-
health problems.                                                  sis-specialized outpatient clinics of 18 different dermatology
    Although there are a few studies related to the use of        departments located in seven regions of Turkey between
SM and the internet conducted with patients presenting to         January 1, 2020, and July 1, 2020. Each researcher had to
dermatology outpatient clinics, there is no research specif-      enroll at least 75 patients in the study [7]. Although part of
ically focusing on psoriasis patients [4,5]. Psoriasis affects    the study coincided with the pandemic period, dermatology
the quality of life of patients due to recurrent nature of the    outpatient clinics were actively working in hospitals due to
disease, long-term and sometimes laborious treatment pro-         the regulations of the health authority.
cesses, accompanying symptoms including pain, itching, and
xerosis, and involvement of visible areas such as the face        Procedure
or intimate parts of the body such as the genitals [6]. This      This is a non-interventional, cross-sectional multicenter
prompts patients to explore different treatment options, seek     study. Approval for the study was obtained from the ethics
different physicians and hospitals, and reach other patients      committee of the university (ID 25.12.2019/0527). The sur-
and various medical organizations. In this respect, the inter-    vey questions were prepared by the researchers. Information
net and SM provide patients with a wide range of sources          on the patients clinical findings and the Psoriasis Area Sever-
and fast access to information.                                   ity Index (PASI) scores were noted by their physicians. The



2                                                                      Original Article | Dermatol Pract Concept. 2022;12(3):e2022143
patients were asked to complete the survey (Supplementary              who stated that they used SM and the internet, 48.38% reg-
Table 1) and the Dermatology Life Quality Index (DLQI)                 ularly and 32.14% sometimes made inquiries about psoria-
questionnaire without any time limitation [8,9].                       sis on these platforms while 19.48% did not consult online
                                                                       platforms for this purpose.
Statistical Analysis                                                       The use of SM and the internet for psoriasis was signifi-
Data obtained were analyzed using SPSS IBM software package            cantly higher in young people, those with university or higher
at the 95% confidence level, ie, 5% margin of error. Descriptive       education levels. Although there was no significant differ-
statistics concerning the survey results were given as frequen-        ence between smokers and non-smokers, the smoking pack
cies and percentages. In continuous measurements showing a             years were significantly higher in SM users than non-SM us-
normal distribution, paired-group comparisons were under-              ers (11±23 pack years, 9±14 pack years; P = 0.027, respec-
taken with the independent-samples t-test while three groups           tively). Social media and internet use in psoriasis patients
were compared using analysis of variance (ANOVA). In cases             were found not significantly associated with gender, marital
where there was a significant difference in ANOVA, the groups          status, alcohol use, and monthly family income (Table 1).
that caused the significant difference were examined using the         The use of the internet and SM for psoriasis-related inquiries
least significant difference test as a post-hoc method. In contin-     was higher in Marmara region where the education level and
uous measurements that did not show a normal distribution,             the rate of working population are high, as well as in Central
two groups were compared using the Mann-Whitney U test                 Anatolia where the capital of Turkey is located.
and three-group comparisons were undertaken with the Krus-                 Social media and internet use was significantly higher in
kal-Wallis H test. The test statistics for the comparison of two       those with higher DLQI and PASI scores, those with facial,
or more groups were obtained using the chi-squared test.               scalp, hand, genital and inverse involvement, and those with
                                                                       arthralgia/arthritis. Nail involvement, family history of pso-

Results                                                                riasis, and disease duration were not found associated with
                                                                       SM and internet use (Table 2). There was no difference be-
A total of 1,520 participants (709 women and 811 men)                  tween psoriasis subtypes in terms of SM and internet usage.
were included in the study and all of them agreed to par-                  SM tools used by the participants to investigate psoriasis
ticipate. Of the participants, 51.40% stated that they used            are shown in Figure 1. Most participants (86%) reported us-
SM and the internet regularly, 21.90% sometimes used them,             ing Google for this purpose. The participants most frequently
and 26.70% never used them. In addition, of the participants           (76%) sought information about the disease itself, followed



              Table 1. Social media and internet use according to demographic characteristics.
   Frequency of social                                           Yes              No        Sometimes          Overall          P
       media use                                            N          %     N         %     N       %       N        %
 Gender                        Female                      238    45.9%     122   23.5%     159   30.6%     519     46.6%
                                                                                                                             0.136
                               Male                        274    46.1%     165   27.8%     155   26.1%     594     53.4%
 Marital status                Married                     356    45.6%     211   27.0%     214   27.4%     781     70.1%
                               Single                      144    48.5%     67    22.6%     86    29.0%     297     26.7%    0.336
                               Divorced                     13    36.1%      9    25.0%     14    38.9%      36     3.2%
 Smoking status                Non-smoker                  277    44.2%     161   25.7%     188   30.0%     626     56.3%
                                                                                                                             0.193
                               Smoker                      236    48.7%     126   26.0%     123   25.4%     485     43.7%
 Ex-smoker                     No                          473    46.6%     253   24.9%     290   28.5%     1016    91.4%
                                                                                                                             0.173
                               Yes                          39    41.1%     32    33.7%     24    25.3%      95     8.6%
 Alcohol                       No                          404    45.7%     228   25.8%     252   28.5%     884    79.4%
                               Regularly                    13    54.2%      6    25.0%      5    20.8%      24     2.2%     0.918
                               Social drinker               96    46.8%     53    25.9%     56    27.3%     205    18.4%
 Monthly income                300$ and below               96    41.4%     69    29.7%     67    28.9%     232    20.8%
 level*                        300-650$                    277    47.7%     135   23.2%     169   29.1%     581    52.2%
                                                                                                                             0.376
                               650-1,300$                  110    45.1%     70    28.7%     64    26.2%     244    21.9%
                               above 1,300$                 29    51.8%     13    23.2%     14    25.0%      56     5.0%

                                                                                                                     Table1 continues



Original Article | Dermatol Pract Concept. 2022;12(3):e2022143                                                                      3
      Table 1. Social media and internet use according to demographic characteristics. (continued)
    Frequency of social                                           Yes                 No             Sometimes         Overall          P
        media use                                            N          %        N         %         N      %       N         %
 Education level              Literate**                     2     11.1%         10     55.6%        6     33.3%    18      1.6%
                              Primary-middle school      156       43.8%         99     27.8%       101    28.4%   356     32.0%
                              High school-college        208       46.3%        102     22.7%    139       31.0%   449     40.4%
                                                                                                                                      0.009
                              University                 129       50.0%         66     25.6%        63    24.4%   258     23.2%
                              Post-graduate
                                                             17    56.7%         9      30.0%        4     13.3%    30      2.7%
                              (Masters-PhD)
 Age, years, mean ±
                                                              39 ± 13              43 ± 15            40 ± 13          41 ± 14       0.000
 standard deviation

*Calculated based on the exchange rate at the time of the study.
**Refers to participants that have no formal education but know how to read and write.


                Table 2. Social media and the internet use according to disease involvement.
    Frequency of social                                Yes                      No              Sometimes            Overall           P
        media use                                 N          %              N         %         N          %       N         %
 Joint pain/involvement       Arthralgia         120     45.1%          55        20.7%         91        34.2%    266    25.0%
                              Arthritis           73     52.9%          27        19.6%         38        27.5%    138    12.9%      0.006
                              Absent             287     43.4%          197       29.8%        178        26.9%    662    62.1%
 Nail involvement             Absent             310     47.9%          167       25.8%        170        26.3%    647    58.1%
                                                                                                                                     0.205
                              Present            203     43.5%          120       25.7%        144        30.8%    467    41.9%
 Scalp involvement            Absent             217     43.3%          148       29.5%        136        27.1%    501    45.0%
                                                                                                                                     0.032
                              Present            296     48.3%          139       22.7%        178        29.0%    613    55.0%
 Facial involvement           Absent             402     44.4%          244       26.9%        260        28.7%    906    81.3%
                                                                                                                                     0.050
                              Present            111     53.4%          43        20.7%         54        26.0%    208    18.7%
 Hand involvement             Absent             324     46.0%          196       27.8%        184        26.1%    704    63.2%
                                                                                                                                     0.048
                              Present            189     46.1%          91        22.2%        130        31.7%    410    36.8%
 Genital involvement          Absent             382     44.2%          246       28.4%        237        27.4%    865    77.6%
                                                                                                                                     0.001
                              Present            131     52.6%          41        16.5%         77        30.9%    249    22.4%
 Inverse involvement          Absent             375     43.5%          249       28.9%        239        27.7%    863    77.5%      0.000
                              Present            138     55.0%          38        15.1%         75        29.9%    251    22.5%
 PASI                                               6.8 ± 9                 5.7 ± 9.7           6.8 ± 9.5           6.5 ± 9.4        0.011
 DLQI                                             10.3 ± 8.7                6.6 ± 7.1           9.7 ± 8.4           9.1 ± 8.4        0.000
 Disease duration                                   14 ± 10                 15 ± 11              15 ± 11             14 ± 10         0.217
 Family history of            Absent             188     44.0%          111       26.0%        128        30.0%    427    38.8%
                                                                                                                                     0.560
 psoriasis                    Present            315     46.7%          176       26.1%        183        27.2%    674    61.2%

DLQI = Dermatology Life Quality Index scores; PASI = The Psoriasis Area Severity Index scores.


by medication and treatment options (62%), physicians                   reported that they read the posts if they caught their atten-
(40%), and other patients posts (43%). Of the respondents,              tion, 23.6% looked for further information on what was dis-
9.9% were members of SM groups related to psoriasis, 3.1%               cussed, 20.7% just read the posts, 22.2% felt relieved to see
were former members, and 87% stated that they had never                 others with similar problems, and 8.4% thought that a phy-
joined such a group. The platforms used for patient groups              sician or product was advertised in these online groups. We
were Facebook for 80.3% of the participants, Instagram for              determined that 78.7% of the participants did not ask their
21.4%, WhatsApp for 10.3%, Twitter for 2.6%, and other                  physician about the accuracy of information obtained from
platforms for 12%. When asked about their views on what                 SM and the internet (Figure 2A). In case of contradiction be-
was discussed in these groups, 35.7% of the respondents                 tween their findings in internet search and their physicians’



4                                                                               Original Article | Dermatol Pract Concept. 2022;12(3):e2022143
                         900                                                                                                             100%

                         800                                                                                                             90%

                         700                                                                                                             80%
NUMBER OF PARTICIPANTS




                                                                                                                                         70%
                         600
                                                                                                                                         60%
                         500
                                                                                                                                         50%
                         400
                                                                                                                                         40%
                         300
                                                                                                                                         30%
                         200                                                                                                             20%
                         100                                                                                                             10%
                            0                                                                                                            0%
                                                                                              PATIENT
                                  GOOGLE        FACEBOOK       YOUTUBE      INSTAGRAM          BLOGS        TWITTER         OTHER

                            n       771            364           295              280           172            72             58

                            %       86%            41%           33%              31%          19%             8%            6%

Figure 1. Social media and internet platforms on which the participants sought information about psoriasis.




Figure 2. (A) The answers to the question “Do you ask your physician about the accuracy of information obtained from social media?”.
(B) The answers to the question “In case of contradiction between the SM and your physician, who would you trust?”.



recommendations, 84.6% of the participants stated that they                         (41.4%) and disease (31.1%). Furthermore, 8.7% stated
would trust their physicians (Figure 2B).                                           that they sent physicians photographs of their symptoms
                         Of the participants, 19.4% stated that they used SM to     in order to ask for their advice, 12% asked for help to
try to contact dermatologists to ask questions about their                          get hospital appointments, and the remainder asked for
disease. When online platforms were used for this pur-                              advice on other skin diseases or the health problems of
pose, 14.2% of the participants considered that physicians                          relatives. The majority of the participants that tried to
should answer patients’ questions, 13.6% stated that only                           contact physicians on SM (77.9%) added that they did
physicians working in private hospitals should answer such                          not receive a response, while most of those that obtained
questions, 32.8% thought that physicians should respond                             a response (61.8%) mentioned that they followed physi-
politely even if they were not obliged to answer, and 43.6%                         cians’ recommendations, 21.2% sometimes followed these
believed that physicians did not have to answer. The par-                           recommendations, and 17% did not do what was recom-
ticipants stated that they most frequently (66.7%) tried to                         mended. When the participants were asked whether they
contact physicians by personal or clinic phone (Figure 3A).                         would trust a physician’s answer if they directed him/her a
Of those that tried to contact via SM, they mostly used                             question accompanied by a photograph, 56.6% responded
Facebook (49.3%) (Figure 3B). When they reached physi-                              as no, 11.4% as yes, and 32% as yes but they would still
cians, they mostly asked questions about their treatment                            visit a physician for an examination.



Original Article | Dermatol Pract Concept. 2022;12(3):e2022143                                                                                 5
    Of the participants, 36.9% did not like the television and            When asked whether they had read a book/brochure
radio programs on psoriasis, 29% considered that such pro-            about psoriasis, 5.8% of the participants stated that they
grams only aimed to promote physicians or advertise prod-             had, 71.7% had not, and 22.5% were not aware of such
ucts, 31.7% wanted to be given information, and 22.8%                 publications. Furthermore, 62.7% of the respondents
stated that it was a relief to see other psoriasis patients. While    wanted seminars on psoriasis to be given by physicians and
52.5% of the participants did not follow such programs,               30.3% by official institutions, and 21.9% stated that they
14.5% followed them regularly and 33% sometimes watched               would attend such events if they were free, 9% would be
them. Most of the respondents (83.9%) reported that they              willing to pay a fee, and 19.3% were not interested. More
did not apply what they saw on television, and 9.1% always            than half the participants (56.5%) reported that hospitals
and 7% sometimes tried them. In addition, the participants            or physicians did not give them educational brochures
made further inquiries about what they saw on television              while 26.9% were provided such publications and read
by consulting the internet (27.4%), a physician (18.4%), a            them, and 16.6% were presented such materials but did not
pharmacist (7%), and other patients (8.2%). Among these               read them.
participants, 13.6% sought further information if what was                Table 3 summarizes the participants responses concern-
presented on television appeared logical while 46.3% did not          ing their recommendations for dermatologists and derma-
make any further inquiries. Only 0.2% of the respondents              tological associations. The respondents most frequently
contacted the television or radio program to ask questions.           (62.8%) wanted the public to be informed that psoriasis
Of the participants, 75.2% stated that they never asked their         was not contagious. Secondly (62%), the patients wanted
physicians about what they saw on television programs while           the dermatologists and the dermatology associations to pre-
10.6% asked such questions implicitly and 14.2% openly.               pare the publications and information shown in SM and the




Figure 3. (A) The patients answers to the question “How do you try to contact your physician?”. (B) The social media platforms which they
use to communicate their physician.



    Table 3. Recommendations of the participants to dermatologists and dermatological associations
                  concerning the use of social media and internet related to psoriasis
                                                Recommendation                                                           N        %
 Society should be made aware that the disease is not contagious.                                                      955      62.8%
 These publications should be prepared by the authorities in this area.                                                942      62.0%
 Sharing false information should not be allowed.                                                                      831      54.7%
 Society should be made aware that treatment is available for the disease.                                             752      49.5%
 Only dermatologists should discuss the disease.                                                                       670      44.1%
 Seminars should be organized in places easily accessible to the public.                                               573      37.7%
 Associations should file a criminal complaint if inaccurate information is present.                                   494      32.5%
 Books-booklets should be prepared and distributed.                                                                    449      29.5%
 More media programs should be made available to present introductory information about the disease.                   402      26.4%
 Patient schools should be organized in hospitals.                                                                     353      23.2%
 More information should be shared on the internet.                                                                    302      19.9%

Total percentage exceeds 100 since the participants were allowed to choose more than one option



6                                                                          Original Article | Dermatol Pract Concept. 2022;12(3):e2022143
internet. They (54.7%) also did not want to see false infor-      difference, but internet and SM users had a mean lower age
mation about psoriasis on SM and the internet.                    and higher education level. This can be explained by the
                                                                  higher internet and SM usage among young adults and those

Conclusions                                                       with a higher education level [18]. Furthermore, the more
                                                                  people quality of life was, the more likely they would look
Our study showed that 80.5% of the patients with psoriasis        for a solution to their disease. In addition, it has been shown
had the habit of regularly or sometimes using SM and the in-      that the involvement of the visible parts of the body such as
ternet to seek information about their disease. This behavior     the face and hands and intimate parts such as the genitals
was more common in young people, those with university or         and skin folds, as well as the presence of accompanying pain-
higher education levels, those with higher DLQI and PASI          ful conditions, including arthralgia/arthritis are more likely
scores, those with facial, scalp, hand, genital and inverse       to have negative psychosocial effects on patients and result
involvement, and those with arthralgia/arthritis. The most        in higher DLQI scores [6]. Unsurprisingly, in the presence of
commonly used search engine was Google (86%) and the              such involvements, patients tend to make more online inqui-
most commonly used SM platform was Facebook (41%).                ries concerning their disease.
    While it is known that globally, 4.5% of online inquiries        In the USA, the rate of individuals referring to Facebook
was related to health in the 2000s, this rate has gradually       to obtain information about health was found to be 38%
increased, reaching 79% today [4,10,11]. Patients resort to       [19]. In a study conducted with dermatology patients, it was
SM and the internet to obtain information about their dis-        shown that the patients obtained information about their
eases and treatments, communicate with other patients and         physicians through SM 9.7 times more frequently compared
physicians, and look for organizations related to their dis-      to traditional media sources [11]. The source of this infor-
eases [12].                                                       mation was mostly Twitter (44.5%), followed by Instagram
    A previous study conducted in the United States of Amer-      (27.9%), and Facebook (2.8%). However, the authors did
ica (USA) reported that 80% of internet users consulted the       not include search engines such as Google in their study [11].
internet to access information about at least one disease         In another study, the patients most frequently used Goo-
throughout their lifetimes [13]. However among the studies        gle (42.3%), followed by YouTube (34.6%) and Facebook
conducted for this purpose, especially those related to inter-    (22.3%) for their medical searches[5]. In our study, 86% of
net use on a disease basis have not yet become widespread,        the patients used Google for this purpose, while 41% used
and research on the general use of the internet about diseases    Facebook, 33% YouTube, 31% Instagram, and 8% Twitter.
has only accelerated in the last few years. Our study is the      Since Google is globally the most used search engine as in
first to investigate the internet and SM use of patients with     our country, it is natural for patients to seek information
psoriasis and includes data obtained from 1,520 patients          about their diseases using this engine. Facebook is the most
participating from different regions of Turkey.                   frequently used SM tool for adults using the internet [20].
    In a study conducted with 460 patients who presented          However, SM habits can change over time. Some websites/
to a general dermatology outpatient clinic, the rate of those     applications may lose popularity while others may become
consulting SM was found to be 80% [14]. In another study          more popular or their popularity may fluctuate. In addition,
conducted with patients who presented to the dermatology          SM applications can be expected to vary according to geo-
outpatient clinic in Saudi Arabia, this rate was found to be      graphical regions [21].
47% [4]. In a general surgery study, the rate of patients re-        One of the interesting findings of our study is that 19%
ferring to online research before hernia surgery was reported     of the participants used patient blogs to obtain information.
to be 67% [15]. In our study, 80.5% of the patients with          In addition, 22.8% stated that it was a relief seeing patients
psoriasis stated that they resorted to the internet or SM to      with psoriasis like themselves on traditional media programs
obtain information about their disease. The difference in this    such as television. In general, patients express that they feel
rate seems to be due to our research focusing on a specific       comfortable and less embarrassed when they meet people
chronic disease. The rate of online medical inquires is also      with the same disease and exchange views about their dis-
reported to be higher among women, people with higher in-         ease [22]. The findings from our study indicate that patients
come, those with higher education levels, and those more          are interested in what other patients with the same disease
affected by the disease [5,14-16]. Similarly, in our study, we    experience and they may even compare their experiences to
observed that the use of SM and the internet for psoriasis        others, and it is comforting for them to realize that there are
was statistically significantly higher in young people and        others that suffer from the same problems.
highly educated individuals. In dietetic studies, the use of SM      Our participants reported that they mostly consulted the
was found to be higher in women and in young adults aged          internet to seek information about their disease, followed by
18 to 35 years [17]. In the current study, there was no gender    treatment options and physicians. Patients motivations to



Original Article | Dermatol Pract Concept. 2022;12(3):e2022143                                                                 7
resort to SM and the internet to obtain information about          and comments, it is inevitable that some of the shared in-
their diseases can be listed as understanding the disease,         formation is false. Our study showed that a high rate of
exploring personal diagnosis-treatment methods and alter-          patients with psoriasis consulted online sources to seek in-
native treatments, and obtaining information about doctors         formation about their disease. They most frequently used
and hospitals. However, they still consider physicians as the      Google, Facebook, and YouTube channels to obtain infor-
most trustworthy source [14]. In our study, 84.6% of the par-      mation about the disease, treatment options, and doctors.
ticipants stated that even if they conducted online searches,      However, although they consulted the internet and SM to
they would trust the physician in the presence of conflicting      seek information, most stated that they had greater trust
information. As a more interesting finding, 56.6% of the par-      in the information given by physicians. They also followed
ticipants stated that even if they had been given the oppor-       patient blogs and were relieved to see the presence of other
tunity to obtain information about their disease by sending        patients suffering from psoriasis. They expressed their dis-
photographs to their physician, they would have not trusted        comfort with the misbelief of a section of society without
the physician response and 32% would still go to a physician       the disease that psoriasis is contagious, and they recom-
for an examination. This shows that although the patients          mended dermatologists and dermatological associations
trusted physicians’ knowledge, they would still prefer to be       to educate the public in this regard. As dermatologists, we
personally examined by a physician and exchange ideas.             have great responsibility in sharing accurate information
    In this study, 78.7% of the respondents stated that they       about psoriasis on SM and the internet, as well as raising
did not share with their physicians what they inquired about       the awareness of society.
on the internet related to their disease, which is in agree-
ment with previous studies.14 This can be interpreted as pa-
                                                                   References
tients not being willing to disclose to their physicians that
they consult online sources and they may even be concerned         1. Ljubenovic M, Lazarevic V, Golubovic M, Binic I. Integrative ap-
about their physicians reaction.                                      proach to psoriasis vulgaris. Holist Nurs Pract. 2018;32(3): 133–
                                                                      139. DOI: 10.1097/HNP.0000000000000180. PMID: 29261515.
    When asked about their recommendations to dermatol-
                                                                   2. Oji V, Luger TA. The skin in psoriasis: assessment and challenges.
ogists and dermatological associations regarding the use of
                                                                      Clin Exp Rheumato.l 2015;33(5 Suppl 93):S14–S19. PMID:
SM, internet and traditional media, most of the participants          26472560.
(62.8%) stated that society should be informed that psoriasis      3. Grajales FJ 3rd, Sheps S, Ho K, Novak-Lauscher H, Eysenbach
is not contagious. In addition, they stated that informative          G. SM: a review and tutorial of applications in medicine and
publications and broadcasts should be prepared by the au-             health care. J Med Internet Res. 2014;16(2):e13. DOI: 10.2196
                                                                      /jmir.2912. PMID: 24518354. PMCID: PMC3936280.
thorities in the field, such as dermatologists (62%) and that
                                                                   4. AlGhamdi KM, Moussa NA. Internet use by the public to
false information about the disease should not be allowed to
                                                                      search for health-related information. Int J Med Inform.
spread (54.7%). It is now widely known that psoriasis is not          2012;81(6):363–373. DOI: 10.1016/j.ijmedinf.2011.12.004.
contagious, but even today patients with lesions, especially          PMID: 22217800.
in visible areas still express that other people refrain from      5. Gantenbein L, Navarini AA, Maul LV, Brandt O, Mueller SM.
touching them or shaking hands [23,24]. In this respect, it           Internet and SM use in dermatology patients: search behav-
                                                                      ior and impact on patient-physician relationship. Dermatol
is very important that three out of every five participants in
                                                                      Ther. 2020;33(6):e14098. DOI: 10.1111/dth.14098. PMID:
the current study recommended that the public should be
                                                                      32725746.
informed about the non-contagious nature of the disease. It        6. Alpsoy E, Polat M, FettahlıoGlu-Karaman B, et al. Inter-
is clear that this situation affects the social relationships of      nalized stigma in psoriasis: A multicenter study. J Dermato.
patients.                                                             l 2017;44(8):885–891. DOI: 10.1111/1346-8138.13841. PMID:
    The main limitations of our study are that the data were          28407292.
                                                                   7. Scala E, Megna M, Amerio P, et al. Patients’ demographic
collected through a survey, and therefore they were based on
                                                                      and socioeconomic characteristics influence the thera-
the self-reported statements of the patients and a part of the
                                                                      peutic decision-making process in psoriasis. PLoS One.
study period coincided with the ongoing pandemic. During              2020;15(8):e0237267. DOI: 10.1371/journal.pone.0237267.
the first months of the pandemic, working from home may               PMID: 32785291. PMCID: PMC7423114.
make the patients access SM frequently. A comparison with          8. Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)--a
another chronic skin disease or with a control group may be           simple practical measure for routine clinical use. Clin Exp Der-
                                                                      matol. 1994;19(3):210–216. DOI: 10.1111/j.1365-2230.1994.
done for further studies. However, this study is important
                                                                      tb01167.x. PMID: 8033378.
due to being the first in this area, multicenter design involv-
                                                                   9. Oztürkcan S, Ermertcan AT, Eser E, Sahin MT. Cross validation
ing the whole country, and inclusion of a large patient series.       of the Turkish version of dermatology life quality index. Int
    Although SM comprises many favorable characteristics,             J Dermatol. 2006;45(11):1300–1307. DOI: 10.1111/j.1365-
such as allowing for the mutual exchange of information               4632.2006.02881.x. PMID: 17076710.



8                                                                      Original Article | Dermatol Pract Concept. 2022;12(3):e2022143
10. Eysenbach G, Kohler C. What is the prevalence of health-­related           qualitative evidence. J Med Internet Res. 2018;20(2):e55. DOI:
    searches on the World Wide Web? Qualitative and quantita-                  10.2196/jmir.9230. PMID: 29463487. PMCID: PMC5840482.
    tive analysis of search engine queries on the Internet. AMIA         18.   Perrin A. Social Networking Usage: 2005-2015. Pew Re-
    Annu Symp Proc. 2003;225–229. PMID: 14728167. PMCID:                       search Center. 2015. Available from: http://www.pewinternet.
    PMC1480194.                                                                org/2015/10/08/2015/Social-Networking-Usage-2005-2015
11. Albeshri M, Alharithy R, Altalhab S, Alluhayyan OB, Farhat                 /[Last accessed: August 27, 2021].
    AM. The influence of modern SM on dermatologist selection            19.   Fox S. Health information online. Pew Research Center 2005.
    by patients. Cureus. 2020;12(12) e11822. DOI: 10.7759/cu-                  Available from: https://www.pewresearch.org/­     internet/2005/​
    reus.11822. PMID: 33409064. PMCID: PMC7781535.                             05/17/health-information-online/ [Last accessed: August 27,
12. Reich J, Guo L, Groshek J, et al. SM use and preferences in                2021].
    patients with inflammatory bowel disease. Inflamm Bowel              20.   Greenwood S, Perrin A, Duggan M. SM Update 2016. Pew Re-
    Dis. 2019;25(3):587–591. DOI: 10.1093/ibd/izy280. PMID:                    search Center 2016. Available from: https://www.pewresearch.
    30203036.                                                                  org/internet/2016/11/11/social-media-update-2016/ [Last ac-
13. Kardeş S. Seasonal variation in the internet searches for psori-           cessed: August 27, 2021].
    asis. Arch Dermatol Res. 2019;311(6):461–467. DOI: 10.1007​          21.   Niu Z, Willoughby J, Zhou R. Associations of health literacy,
    /s00403-019-01921-0. PMID: 31025101.                                       SM use, and self-efficacy with health information-seeking inten-
14. Yousaf A, Hagen R, Delaney E, Davis S, Zinn Z. The influence               tions among SM users in china: cross-sectional survey. J Med
    of SM on acne treatment: a cross-sectional survey. Pediatr Der-            Internet Res. 2021;23(2):e19134. DOI: 10.2196/19134. PMID:
    matol. 2020;37(2):301–304. DOI: 10.1111/pde.14091. PMID:                   33629955. PMCID: PMC7952238.
    31944359. PMCID: PMC7453954.                                         22.   Zhao J, Han H, Zhong B, Xie W, Chen Y, Zhi M. Health in-
15. Miller MP, Arefanian S, Blatnik JA. The impact of internet-based           formation on SM helps mitigate Crohn's disease symptoms
    patient self-education of surgical mesh on patient attitudes               and improves patients' clinical course. Comput Human Behav.
    and healthcare decisions prior to hernia surgery. Surg Endosc.             2021;115:106588. DOI: 10.1016/j.chb.2020.106588.
    2020;34(11):5132–5141. DOI: 10.1007/s00464-019-07300-0.              23.   Kim WB, Jerome D, Yeung J. Diagnosis and management of
    PMID: 31832857.                                                            psoriasis. Can Fam Physician. 2017;63(4):278–285. PMID:
16. Bender JL, Hueniken K, Eng L, et al. Internet and SM use in can-           28404701. PMCID: PMC5389757.
    cer patients: association with distress and perceived benefits and   24.   Russo PA, Ilchef R, Cooper AJ. Psychiatric morbidity in psoria-
    limitations. Support Care Cancer. 2021;29(9):5273-5281. DOI:               sis: a review. Australas J Dermatol. 2004;45(3):155–159. DOI:
    10.1007/s00520-021-06077-0. PMID: 33651181.                                10.1111/j.1440-0960.2004.00078.x. PMID: 15250891.
17. Dumas AA, Lapointe A, Desroches S. Users, uses, and effects of
    SM in dietetic practice: scoping review of the quantitative and




Original Article | Dermatol Pract Concept. 2022;12(3):e2022143                                                                             9
                  Supplementary Table 1. Survey questions directed to the participants
Are you actively using social media and the internet?
Are you using social media and the internet to obtain information about psoriasis?
If yes, Which social media/internet platforms are you using?
What subjects are you inquiring about concerning your disease?
Are you a member of any online patient groups? If yes, which social media groups?
Are you following/writing posts in these groups? What do you think about these groups?
Would you share with your physician what you have seen on online about your disease?
If the information on social media conflicts what your physician says, which would you trust?
If you consult a dermatologist with a photograph of your disease on social media, would you trust his/her answer?
Are you trying to contact physicians using social media? If yes, on which platforms?
When you contact a physician online, do you think he/she is obliged to answer your questions about your disease?
What do you ask physicians that you contact online?
Do you trust their answers? Do you follow their recommendations?
What do you think about the health programs on television/radio concerning your disease?
Do you follow these programs? Do you further investigate what you see in these programs?
Would you consult your physician about the information presented in these programs?
Have you ever applied the recommendations you have seen in these programs to relieve your disease?
Do you read books/brochures on psoriasis? Do you read information booklets provided by physicians?
Would you like educational seminars to be organized on psoriasis?
Do you have any recommendations to dermatologists and dermatological associations concerning the use of social
media/media related to psoriasis?




10                                                                Original Article | Dermatol Pract Concept. 2022;12(3):e2022143
