JMIR Publications

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  Pediatrics

  Sep 6, 2018

  Use of Electronic Entertainment and Communication Devices Among a Saudi Pediatric Population: Cross-Sectional Study

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  Authors List:

  • Sami Omar Amawi  
  • Ahmed Hussein Subki  
  • Hazim Abdulkarim Khatib  
  • Omer Sameer Alkhateeb  
  • Rida Hashim Fida  
  • Omar Mohammed Saggaf  
  • Mohammed Mohammed Jan  

  Abstract:

  Background: Excessive use of various electronic entertainment and communication devices, particularly among children, has been associated with increased behavioral problems. Despite children’s escalating use of these devices, parents’ awareness about the impact thereof is still lacking. Objective: The objective of this study was to assess the use of electronic entertainment and communication devices among children attending a health care facility in Jeddah, Saudi Arabia, as well as the parental impression regarding the impact of electronic devices use on the behavior of their child. Methods: A focused 15-item questionnaire was designed for this cross-sectional study involving mothers of children attending the Well Baby Clinic of King Abdulaziz University Hospital, Jeddah, Saudi Arabia from July 1, 2016 to November 30, 2016. Results: This study included 190 mothers. The mean ages of the children, mothers, and fathers were 7.3 (SD 3.5), 35 (SD 6.5), and 43 (SD 8.3) years, respectively. Most children were of Saudi Arabian nationality (106/190, 55.8%). The most used device in this study was television (154/190, 81.0%), followed by mobile phones (134/190, 70.5%), and tablets (116/190, 61.0%). Computers were the least used device in this study (59/190, 31.0%). In total, 24.7% (47/190) of children in this study used electronic entertainment and communication devices for more than 4 hours per day. Most mothers (129/190, 67.9%) felt that their child spends too much time on electronic devices. Hyperactivity or behavioral problems were reported by 20.0% (38/190) of mothers in this study. Children spending longer hours on electronic devices were much more likely to be perceived to suffer from hyperactivity or behavioral problems (P=.01). Conclusions: Parental awareness is necessary to counteract the harmful effects of using electronic devices for a prolonged period. Parents require help to cope with this problem effectively.

  • Interact J Med Res 2018;7(2):e13

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  Information Quality in Digital Media

  Jul 20, 2018

  Trustworthiness, Readability, and Suitability of Web-Based Information for Stroke Prevention and Self-Management for Korean Americans: Critical Evaluation

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  Authors List:

  • Mikyoung A Lee  
  • Cha-Nam Shin  
  • Kyungeh An  

  Abstract:

  Background: Websites are common sources of health information to stroke survivors and caregivers for continual management of stroke and its long-term sequelae. The presence of risk factors and mortality rates related to stroke are high in Korean Americans. A vast majority of this group are active Web users and rely on the Web-based information due to lack of insurance and, thus, limited access to long-term stroke care. Thus, it is critical to evaluate existing stroke websites for their trustworthiness, readability, and suitability. Objective: The objective of our study was to provide a systematic evaluation of stroke-related websites regarding (1) trustworthiness, (2) readability, and (3) suitability for stroke prevention and self-management for Korean Americans. Methods: We selected a total of 156 websites using search terms “stroke,” “CVA,” “중풍 (jungpung),” and “뇌졸증 (noejoljung)” on Google and Yahoo. After eliminating duplicates and irrelevant websites (n=116), we evaluated a total of 42 websites (15 in English and 27 in Korean) using the National Library of Medicine’s health website’s evaluation tool for trustworthiness; Simple Measure of Gobbledygook for readability; and Suitability Assessment of Materials for suitability. All three instruments used the 3-point Likert scale: superior (=2), adequate (=1), or not suitable (=0). Results: Of the 42 websites evaluated, we rated 62% (26/42) websites as “adequate” or above for trustworthiness. The information on 48% (20/42) websites had not been updated for more than a year, which indicates poor currency; 33% (14/42) websites failed to provide the publisher and contact information, which yields poor authority; 50% (21/42) websites did not cite sources of health information, which indicates lack of accuracy. Only 2 websites met the recommended readability (5th grade or lower reading level). The suitability was also suboptimal; only 1 website was rated as “superior”; 60% (25/42) websites were “adequate,” and 38% (16/42) were “not suitable.” Most websites were limited in graphical directions, interactive motivations for desired healthy behaviors, and multiple language translations. Conclusions: The existing stroke-related websites in either English or Korean are trustworthy and suitable, yet precise citation of evidence-based information will improve trustworthiness. The contents requiring high reading level may set a barrier to the utilization of Web-based health information for Korean Americans with a lower level of education. In addition, supplementing graphical examples, interaction features, and culturally relevant information in multiple languages are the areas for improvement in suitability. The improved features can reduce the reading burden of stroke patients or caregivers and build their confidence when applying the information for stroke management in daily living. These strategies are especially crucial to Korean Americans, who inevitably seek Web-based information to fill the gap between their demand and access to health care for a long-term self-management after a stroke.

  • Interact J Med Res 2018;7(2):e10440

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  Information Quality in Digital Media

  Jul 16, 2018

  Health Information on Firefighter Websites: Structured Analysis

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  Authors List:

  • Mostin A Hu  
  • Joy C MacDermid  
  • Shannon Killip  
  • Margaret Lomotan  
  • FIREWELL

  Abstract:

  Background: Owing to the fact that firefighters have unique health risks, access to firefighter-specific internet-based health information is a potential mechanism for achieving better health and work outcomes. Objective: The objective of our study was to identify the amount and nature of health information resources available on Canadian firefighter-specific websites and the extent to which resources are consistent across websites as a surrogate indicator of diffusion of information. Methods: A search of health resources on firefighter websites (union and employer) for all Canadian provinces, major cities and a subset of smaller cities, and the International Association of Fire Fighters (IAFF) website was conducted on Google (July 2017). Content was identified and classified based on the type of resource, health focus, and location. The quantity and nature of the resources were summarized using descriptive statistics. Results: Among all (N=313) websites reviewed, 41 websites had health information with a cumulative total of 128 resources that addressed firefighter mental (59/128, 46.1%), physical (43/128, 33.6%), and work health (26/128, 20.3%). The highest density of information was found on international and national websites (13 resources per website) and the least on local websites (1 resource per 7 websites). Three provinces (Ontario, Québec, and British Columbia) hosted 81% (65/80) of the provincial, territorial and local resources. General mental health (20/59, 34%), posttraumatic stress disorder (14/59, 24%), and suicide (14/59, 24%) were the most prevalent topics within the mental health resources, whereas half (21/43, 49%) of all physical health resources were on cancer. No resources from Northern Canada were found. Musculoskeletal health was not mentioned in any of the resources identified. There was minimal cross-linking of resources across sites (only 4 resources were duplicated across sites), and there was no clear indication of how the content was vetted or evaluated for quality. Conclusions: There was wide variation in the amount and type of information available on different firefighter websites with limited diffusion of information across jurisdictions. Quality evaluation and coordination of resources should be considered to enhance firefighters’ access to quality health information to meet their specific needs. Mental health and cancer information aligned with high rates of these health problems in firefighters, whereas the lack of information on musculoskeletal health was discordant with their high rate of work injury claims for these problems.

  • Interact J Med Res 2018;7(2):e12

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  Public Health

  Jun 14, 2018

  Characteristics of Adults’ Use of Facebook and the Potential Impact on Health Behavior: Secondary Data Analysis

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  Authors List:

  • Kelly Bosak  
  • Shin Hye Park  

  Abstract:

  Background: Social influences are a primary factor in the adoption of health behaviors. Social media platforms, such as Facebook, disseminate information, raise awareness, and provide motivation and support for positive health behaviors. Facebook has evolved rapidly and is now a part of many individuals' daily routine. The high degree of individual engagement and low attrition rate of this platform necessitate consideration for a potentially positive impact on health behavior. Objective: The aim of this paper is to investigate the use of Facebook by adults. Knowledge is limited to the unique characteristics of Facebook users, including time spent on Facebook by adults of various age groups. Characteristics of Facebook users are important to understand to direct efforts to engage adults in future health behavior interventions. Methods: Institutional Review Board approval was obtained for this secondary analysis of existing de-identified survey data collected for the Pew Research Center. The sample included adults age 18-65 years and above. Binomial logistic regression was performed for the model of age group and Facebook use, controlling for other demographics. A multinomial logistic regression model was used for the variable of time spent on Facebook. Based on the regression models, we computed and reported the marginal effects on Facebook use and time spent of adults age groups, including age groups 18-29, 30-49, 50-64, and 65 and over. We discuss these findings in the context of the implications for promoting positive health behaviors. Results: The demographics of the final sample (N=730) included adults age 18-65 years and above (mean 48.2 yrs, SD 18.3 yrs). The majority of the participants were female (372/730, 50.9%), white (591/730, 80.9%) and non-Hispanic (671/730, 91.9%). Bivariate analysis indicated that Facebook users and nonusers differed significantly by age group (χ2=76.71, P<.001) and sex (χ2=9.04, P=.003). Among subjects aged 50 and above, the predicted probability was 66% for spending the same amount of time, 10% with increased time, and 24% with decreased time. Conclusions: The key findings of this study were Facebook use among midlife and older adults was more likely to stay the same over time, compared to the other age groups. Interestingly, the young adult age group 18-29 years was more likely to decrease their time on Facebook over time. Specifically, younger females were most likely to decrease time spent on Facebook. In general, male participants were most likely to spend the same amount of time on Facebook. These findings have implications for future health intervention research, and ultimately, for translation to the clinic setting to improve health outcomes.

  • Interact J Med Res 2018;7(1):e11

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  Orthopedics

  May 22, 2018

  Factors Affecting Bone Mineral Density Among Snowy Region Residents in Japan: Analysis Using Multiple Linear Regression and Bayesian Network Model

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  Authors List:

  • Teppei Suzuki  
  • Tomoko Shimoda  
  • Noriko Takahashi  
  • Kaori Tsutsumi  
  • Mina Samukawa  
  • Sadako Yoshimura  
  • Katsuhiko Ogasawara  

  Abstract:

  Background: As the onset of osteoporosis leads to reduced activities of daily living and may result in patients being bedridden, efforts to prevent decreased bone density are necessary. Various studies on the relationship between sex, age, nutrients, and exercise habits and bone mineral density have been conducted to date. However, for snowy region residents, the magnitude of influence of various factors affecting bone mineral density and the influence level have not been clarified. Objective: This study aimed to clarify the degree of influence and factors influencing bone mineral density based on survey results on health conditions and lifestyle habits in heavy snow areas. Methods: A total of 354 citizens who visited a drugstore in the target area were included in a study that included using the brief-type self-administered diet history questionnaire on lifestyle and exercise habits. Height, weight, body composition, and bone densitometer values were analyzed using multiple regression to calculate their association with bone mineral density. In addition, a Bayesian network model was used to determine the influence level of each factor as a conditional probability. Results: Multiple regression analysis revealed that age, sex, fracture, and calcium intake significantly influenced bone mineral density. In addition, the result of Bayesian network analysis suggested that age and sex affected bone mineral density, whereas nutrients and exercise habits might not have a direct impact. However, calcium intake and the T-score were significant factors affecting the presence or absence of fracture experiences, suggesting that adequate calcium intake is essential for preventing fractures. Conclusions: In the multiple regression analysis, age, sex, fracture, and calcium intake were selected as factors; however, in the Bayesian analysis, only age and sex affected bone mineral density while nutrients did not. In addition, the fact that calcium intake and the T-score were shown to affect bone fracture history suggests that calcium intake is an important measure that can prevent bone fractures. Overall, these results suggest that measures such as ensuring a bone fracture–free environment and providing nutritional advice for calcium intake can be effective in preventing bone loss.

  • Interact J Med Res 2018;7(1):e10

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  ENT (Ear, Nose, Throat)

  May 8, 2018

  Representation of Tinnitus in the US Newspaper Media and in Facebook Pages: Cross-Sectional Analysis of Secondary Data

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  Authors List:

  • Vinaya Manchaiah  
  • Pierre Ratinaud  
  • Gerhard Andersson  

  Abstract:

  Background: When people with health conditions begin to manage their health issues, one important issue that emerges is the question as to what exactly do they do with the information that they have obtained through various sources (eg, news media, social media, health professionals, friends, and family). The information they gather helps form their opinions and, to some degree, influences their attitudes toward managing their condition. Objective: This study aimed to understand how tinnitus is represented in the US newspaper media and in Facebook pages (ie, social media) using text pattern analysis. Methods: This was a cross-sectional study based upon secondary analyses of publicly available data. The 2 datasets (ie, text corpuses) analyzed in this study were generated from US newspaper media during 1980-2017 (downloaded from the database US Major Dailies by ProQuest) and Facebook pages during 2010-2016. The text corpuses were analyzed using the Iramuteq software using cluster analysis and chi-square tests. Results: The newspaper dataset had 432 articles. The cluster analysis resulted in 5 clusters, which were named as follows: (1) brain stimulation (26.2%), (2) symptoms (13.5%), (3) coping (19.8%), (4) social support (24.2%), and (5) treatment innovation (16.4%). A time series analysis of clusters indicated a change in the pattern of information presented in newspaper media during 1980-2017 (eg, more emphasis on cluster 5, focusing on treatment inventions). The Facebook dataset had 1569 texts. The cluster analysis resulted in 7 clusters, which were named as: (1) diagnosis (21.9%), (2) cause (4.1%), (3) research and development (13.6%), (4) social support (18.8%), (5) challenges (11.1%), (6) symptoms (21.4%), and (7) coping (9.2%). A time series analysis of clusters indicated no change in information presented in Facebook pages on tinnitus during 2011-2016. Conclusions: The study highlights the specific aspects about tinnitus that the US newspaper media and Facebook pages focus on, as well as how these aspects change over time. These findings can help health care providers better understand the presuppositions that tinnitus patients may have. More importantly, the findings can help public health experts and health communication experts in tailoring health information about tinnitus to promote self-management, as well as assisting in appropriate choices of treatment for those living with tinnitus.

  • Interact J Med Res 2018;7(1):e9

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  Health Services Research

  Apr 9, 2018

  The Validity of Online Patient Ratings of Physicians: Analysis of Physician Peer Reviews and Patient Ratings

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  Authors List:

  • Robert J McGrath  
  • Jennifer Lewis Priestley  
  • Yiyun Zhou  
  • Patrick J Culligan  

  Abstract:

  Background: Information from ratings sites are increasingly informing patient decisions related to health care and the selection of physicians. Objective: The current study sought to determine the validity of online patient ratings of physicians through comparison with physician peer review. Methods: We extracted 223,715 reviews of 41,104 physicians from 10 of the largest cities in the United States, including 1142 physicians listed as “America’s Top Doctors” through physician peer review. Differences in mean online patient ratings were tested for physicians who were listed and those who were not. Results: Overall, no differences were found between the online patient ratings based upon physician peer review status. However, statistical differences were found for four specialties (family medicine, allergists, internal medicine, and pediatrics), with online patient ratings significantly higher for those physicians listed as a peer-reviewed “Top Doctor” versus those who were not. Conclusions: The results of this large-scale study indicate that while online patient ratings are consistent with physician peer review for four nonsurgical, primarily in-office specializations, patient ratings were not consistent with physician peer review for specializations like anesthesiology. This result indicates that the validity of patient ratings varies by medical specialization.

  • Interact J Med Res 2018;7(1):e8

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  Information Quality in Digital Media

  Apr 3, 2018

  Quality of Web Information About Palliative Care on Websites from the United States and Japan: Comparative Evaluation Study

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  Authors List:

  • Kouichi Tanabe  
  • Kaho Fujiwara  
  • Hana Ogura  
  • Hatsuna Yasuda  
  • Nobuyuki Goto  
  • Fumiko Ohtsu  

  Abstract:

  Background: Patients and their families are able to obtain information about palliative care from websites easily nowadays. However, there are concerns on the accuracy of information on the Web and how up to date it is. Objective: The objective of this study was to elucidate problematic points of medical information about palliative care obtained from websites, and to compare the quality of the information between Japanese and US websites. Methods: We searched Google Japan and Google USA for websites relating to palliative care. We then evaluated the top 50 websites from each search using the DISCERN and LIDA instruments. Results: We found that Japanese websites were given a lower evaluation of reliability than US websites. In 3 LIDA instrument subcategories—engagability (P<.001), currency (P=.001), and content production procedure (P<.001)—US websites scored significantly higher and had large effect sizes. Conclusions: Our results suggest that Japanese websites have problems with the frequency with which they are updated, their update procedures and policies, and the scrutiny process the evidence must undergo. Additionally, there was a weak association between search ranking and reliability, and simultaneously we found that reliability could not be assessed by search ranking alone.

  • Interact J Med Res 2018;7(1):e7

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  Information Quality in Digital Media

  Mar 20, 2018

  Weight Stigma Goes Viral on the Internet: Systematic Assessment of YouTube Comments Attacking Overweight Men and Women

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  Authors List:

  • Yongwoog Andrew Jeon  
  • Brent Hale  
  • Eric Knackmuhs  
  • Michael Mackert  

  Abstract:

  Background: Anonymous verbal attacks against overweight individuals on social media are common and widespread. These comments often use negative, misogynist, or derogatory words, which stigmatize the targeted individuals with obesity. These verbal attacks may cause depression in overweight individuals, which could subsequently promote unhealthy eating behavior (ie, binge eating) and further weight gain. To develop an intervention policy and strategies that tackle the anonymous, Web-based verbal attacks, a thorough understanding of the comments is necessary. Objective: This study aimed to examine how anonymous users verbally attack or defend overweight individuals in terms of 3 themes: (1) topic of verbal attack (ie, what aspects of overweight individuals are verbally attacked), (2) gender of commenters and targeted overweight individuals, and (3) intensity of derogation depending on the targeted gender (ie, the number of swear words used within comments). Methods: This study analyzed the content of YouTube comments that discuss overweight individuals or groups from 2 viral videos, titled “Fat Girl Tinder Date” and “Fat Guy Tinder Date.” The twin videos provide an avenue through which to analyze discussions of obesity as they organically occurred in a contemporary setting. We randomly sampled and analyzed 320 comments based on a coding instrument developed for this study. Results: First, there were twice as many comments verbally attacking overweight individuals (n=174) than comments defending them (n=89). Second, overweight women are attacked for their capacities (eg, laziness, maturity; 14/51, 28%), whereas overweight men are attacked for their heterosocial skills (eg, rudeness, annoyance; 24/29, 83%). Third, the majority of commenters who attacked overweight women are male (42/52, 81%). Fourth, attacking comments generated toward overweight women included more swear words (mean 0.44, SD 0.77) than those targeting men (mean 0.23, SD 0.48). Conclusions: Our data elucidate a worrying situation of frequent disinhibited aggressive messages against overweight individuals online. Importantly, the patterns of verbal aggression differ depending on the gender of the targeted overweight individuals. Thus, gender-tailored intervention strategies that specifically tackle Internet users’ verbal aggression against overweight individuals need to be developed.

  • Interact J Med Res 2018;7(1):e6

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  Occupational Health and...

  Mar 2, 2018

  Usage, Acceptability, and Effectiveness of an Activity Tracker in a Randomized Trial of a Workplace Sitting Intervention: Mixed-Methods Evaluation

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  Authors List:

  • Charlotte L Brakenridge  
  • Genevieve N Healy  
  • Elisabeth A H Winkler  
  • Brianna S Fjeldsoe  

  Abstract:

  Background: Wearable activity trackers are now a common feature of workplace wellness programs; however, their ability to impact sitting time (the behavior in which most of the desk-based workday is spent) is relatively unknown. This study evaluated the LUMOback, an activity tracker that targets sitting time, as part of a cluster-randomized workplace sitting intervention in desk-based office workers. Objective: Study objectives were to explore: (1) office workers’ self-directed LUMOback use, (2) individual-level characteristics associated with LUMOback use, (3) the impact of LUMOback use on activity and sitting behaviors, and (4) office workers’ perceived LUMOback acceptability. Methods: Exploratory analyses were conducted within the activity tracker intervention group (n=66) of a 2-arm cluster-randomized trial (n=153) with follow-up at 3 and 12 months. The intervention, delivered from within the workplace, consisted of organizational support strategies (eg, manager support, emails) to stand up, sit less, and move more, plus the provision of a LUMOback activity tracker. The LUMOback, worn belted around the waist, provides real-time sitting feedback through a mobile app. LUMOback usage data (n=62), Web-based questionnaires (n=33), activPAL-assessed sitting, prolonged (≥30 min bouts) and nonprolonged (<30 min bouts) sitting, standing and stepping time (7-day, 24 h/day protocol; n=40), and telephone interviews (n=27) were used to evaluate study aims. LUMOback usage data were downloaded and described. Associations between user characteristics and LUMOback usage (in the first 3 months) were analyzed using zero-inflated negative binomial models. Associations between LUMOback usage and 3-month activity outcomes were analyzed using mixed models, correcting for cluster. LUMOback acceptability was explored using 3-month questionnaire data and thematic analysis of telephone interviews (conducted 6 to 10 months post intervention commencement). Results: Tracker uptake was modest (43/61, 70%), and among users, usage over the first 3 months was low (1-48 days, median 8). Usage was greatest among team leaders and those with low self-perceived scores for job control and supervisor relationships. Greater tracker use (≥5 days vs <5 days) was significantly associated only with changes in prolonged unbroken sitting (−50.7 min/16 h; 95% CI −94.0 to −7.3; P=.02) during all waking hours, and changes in nonprolonged sitting (+32.5 min/10 h; 95% CI 5.0 to 59.9; P=.02) during work hours. Participants found the LUMOback easy to use but only somewhat comfortable. Qualitatively, participants valued the real-time app feedback. Nonuptake was attributed to being busy and setup issues. Low usage was attributed to discomfort wearing the LUMOback. Conclusions: The LUMOback—although able to reduce prolonged sitting time—was only used to a limited extent, and its low usage may provide a partial explanation for the limited behavior changes that occurred. Discomfort limited the feasibility of the LUMOback for ongoing use. Such findings yield insight into how to improve upon implementing activity trackers in workplace settings.

  • Interact J Med Res 2018;7(1):e5

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  Orthopedics

  Feb 23, 2018

  The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

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  Authors List:

  • Monique Josephine Mastboom  
  • Rosa Planje  
  • Michiel Adreanus van de Sande  

  Abstract:

  Background: Tenosynovial giant cell tumor (TGCT) is a rare, benign lesion affecting the synovial lining of joints, bursae, and tendon sheaths. It is generally characterized as a locally aggressive and often recurring tumor. A distinction is made between localized- and diffuse-type. The impact of TGCT on daily living is currently ill-described. Objective: The aim of this crowdsourcing study was to evaluate the impact of TGCT on physical function, daily activities, societal participation (work, sports, and hobbies), and overall quality of life from a patient perspective. The secondary aim was to define risk factors for deteriorated outcome in TGCT. Methods: Members of the largest known TGCT Facebook community, PVNS is Pants!!, were invited to an e-survey, partially consisting of validated questionnaires, for 6 months. To confirm disease presence and TGCT-type, patients were requested to share histological or radiological proof of TGCT. Unpaired t tests and chi-square tests were used to compare groups with and without proof and to define risk factors for deteriorated outcome. Results: Three hundred thirty-seven questionnaires, originating from 30 countries, were completed. Median age at diagnosis was 33 (interquartile range [IQR]=25-42) years, majority was female (79.8% [269/337]), diffuse TGCT (70.3% [237/337]), and affected lower extremities (knee 70.9% [239/337] and hip 9.5% [32/337]). In 299 lower-extremity TGCT patients (32.4% [97/299]) with disease confirmation, recurrence rate was 36% and 69.5% in localized and diffuse type, respectively. For both types, pain and swelling decreased after treatment; in contrast, stiffness and range of motion worsened. Patients were limited in their employment (localized 13% [8/61]; diffuse 11.0% [21/191]) and sport-activities (localized 58% [40/69]; diffuse 63.9% [147/230]). Compared with general US population, all patients showed lower Patient-Reported Outcomes Measurements Information System-Physical Function (PROMIS-PF), Short Form-12 (SF-12), and EuroQoL 5 Dimensions 5 Levels (EQ5D-5L) scores, considered clinically relevant, according to estimated minimal important difference (MID). Diffuse versus localized type scored almost 0.5 standard deviation lower for PROMIS-PF (P<.001) and demonstrated a utility score of 5% lower for EQ-5D-5L (P=.03). In localized TGCT, recurrent disease and ≥2 surgeries negatively influenced scores of Visual Analog Scale (VAS)-pain/stiffness, SF-12, and EQ-5D-5L (P<.05). In diffuse type, recurrence resulted in lower score for VAS, PROMIS-PF, SF-12, and EQ-5D-5L (P<.05). In both types, patients with treatment ≤1year had significantly lower SF-12. Conclusions: TGCT has a major impact on daily living in a relatively young and working population. Patients with diffuse type, recurrent disease, and ≥2 surgeries represent lowest functional and quality of life outcomes. Physicians should be aware that TGCT patients frequently continue to experience declined health-related quality of life and physical function and often remain limited in daily life, even after treatment(s).

  • Interact J Med Res 2018;7(1):e4

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  Crowdfunding

  Feb 5, 2018

  Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns

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  Authors List:

  • Romina Alicia Ortiz  
  • Steven Witte  
  • Arvin Gouw  
  • Ana Sanfilippo  
  • Richard Tsai  
  • Danielle Fumagalli  
  • Christine Yu  
  • Karla Lant  
  • Nicole Lipintz  
  • Jennifer Shepphird  
  • Fidelia B Alvina  
  • Jimmy Cheng-Ho Lin  

  Abstract:

  Background: Genetic sequencing is critically important to diagnostic health care efforts in the United States today, yet it is still inaccessible to many. Meanwhile, the internet and social networking have made crowdfunding a realistic avenue for individuals and groups hoping to fund medical and research causes, including patients in need of whole exome genetic sequencing (WES). Objective: Amplify Hope is an educational program designed to investigate what factors affect the success of medical crowdfunding campaigns. We conducted a needs assessment, a series of 25 interviews concerning crowdfunding, and provided training on best practices identified through our assessment for 11 individuals hoping to run their medical crowdfunding campaigns to raise money for patients to access trio WES to identify the mutated proteins that caused their apparent inherited disease. Methods: The crowdfunding education was given in a 30-day training period with resources such as webinars, fact sheets and a crowdfunding training guide emailed to each participant. All campaigns were launched on the same date and were given 30 days to raise the same goal amount of US $5000. Reviewing the 4 crowdfunding campaigns that raised the goal amount within the 30-day period, we sought to identify features that made the 4 crowdfunding campaigns successful. In addition, we sought to assess which factors the resulting 75 donors report as influencing their decision to donate to a campaign. Finally, we investigated whether crowdfunding campaigns for exome sequencing had an impact on increasing applicant’s and donors’ knowledge of genomics. Results: Of the 86 study inquiries, 11 participants submitted the required forms and launched their crowdfunding campaigns. A total of 4 of the 11 campaigns raised their goal amounts within 30 days. Conclusions: We found that social media played an important role in all campaigns. Specifically, a strong social media network, an active outreach process to networks, as well as engagement within the study all correlated with a higher success rate. Amplify Hope donors were more likely to support projects that were near their fundraising goals, and they found video far more effective for learning about genomics than any other medium.

  • Interact J Med Res 2018;7(1):e3

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