HIV-related posts from a Chinese internet discussion forum: An exploratory study.
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ABSTRACT:
SUBMITTER: Dong Y
PROVIDER: S-EPMC6394980 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundAs the problem of patient non-adherence persists and a solution appears hard to be found, it continues to be important to look for new ways to further the issue. We recently conducted a meta-review of adherence intervention studies which yielded a preliminary agenda for future research, practice and theory development in patient adherence. The objective of the present project was to find out to what extent adherence experts consider this agenda relevant and feasible.MethodsThe thirty-five corresponding authors of the review studies included in the meta-review were invited to join the International Expert Forum on Patient Adherence and to participate in a four-week web-based focus group discussion. The discussion was triggered by the points on the preliminary agenda presented as propositions to which forum members could react. Two researchers analysed the transcripts and selected relevant phrases.ResultsTwenty adherence experts participated. Various ideas and viewpoints were raised. After the closure of the web-site, the expert forum was asked to authorize the synthesis of the discussion, to list the propositions in order of priority and to answer a few questions on the use of the web-based focus group as a tool to obtain expert opinions. Their ranking showed that the development of simple interventions is the most promising step to take in fostering patient adherence, preferably within a multidisciplinary setting of medical, pharmaceutical, social and technical science and, not in the least, by incorporating patients' perspectives.ConclusionFor enhancing adherence, the development of simple interventions originating from a multidisciplinary perspective including patients' input, appears most promising. Disclosing patients' perspectives requires open communication about patients' expectations, needs and experiences in taking medication and about what might help them to become and remain adherent.
| S-EPMC2278135 | biostudies-literature
Project description:BACKGROUND:A minimum standard based upon consensus decision making recommends a core set of tinnitus-specific health complaints (outcome domains) that should be assessed and reported in all clinical trials as this enables comparisons to be made across studies as well as data pooling for meta-analysis. OBJECTIVE:This study aimed to further clarify how the outcome domain concepts should be defined for 5 of the core set: tinnitus intrusiveness, sense of control, acceptance of tinnitus, concentration, and ability to ignore. This step requires a clear and fully elaborated definition for each outcome domain, moving from an abstract or a vague concept to an operationalized and measurable health-related construct, so that a suitable measurement instrument can then be identified. METHODS:A series of 5 focus group-style semistructured discussions were conducted via a Web-based discussion forum, each open for 2 weeks and ending with a vote. The participants included 148 tinnitus experts who completed a preceding e-Delphi survey that had generated the original set of minimum standards. The participants were health care users living with tinnitus, health care professionals, clinical researchers, commercial representatives, and funders. RESULTS:The Web discussions led to a revision of all 5 original plain language definitions that had been used in the preceding e-Delphi survey. Each revised definition was voted by 8 to 53 participants and reached the prespecified threshold of 70% consensus for all except tinnitus intrusiveness. Although a single definition was not agreed upon for tinnitus intrusiveness, the majority of participants shared the view that the concept should be sufficiently broad to encapsulate a range of subdomains. The examples included tinnitus awareness, unpleasantness, and impact on different aspects of everyday life. Thematic analysis of the 5 Web-based discussion threads gave important insights into expert interpretations of each core outcome domain, generating an operationalized and measurable health construct in each case. CONCLUSIONS:The qualitative data gathered during the Web-based discussion forum provided an important in-depth understanding of the health concepts that had raised a debate during earlier face-to-face meetings. The descriptive summaries and definitions provide sufficient operationalization of those concepts to proceed to the second stage of core outcome set development that is to identify and evaluate suitable measurement instruments. This study supports the use of Web-based peer discussion forums in defining health concepts.
| S-EPMC6996772 | biostudies-literature
Project description:BackgroundInternet-delivered cognitive behavioral therapy (ICBT) is an effective and accessible treatment for various mental health concerns. ICBT has shown promising treatment outcomes among public safety personnel (PSP), who experience high rates of mental health problems and face barriers to accessing other mental health services. Client engagement and clinical outcomes are better in ICBT with therapist guidance, but ICBT is easier to implement on a large scale when it is self-guided. Therefore, it is important to identify strategies to improve outcomes and engagement in self-guided ICBT and other self-guided digital mental health interventions. One such strategy is the use of online discussion forums to provide ICBT clients with opportunities for mutual social support. Self-guided interventions accompanied by online discussion forums have shown excellent treatment outcomes, but there is a need for research experimentally testing the impact of online discussion forums in ICBT.ObjectiveWe aimed to evaluate a transdiagnostic, self-guided ICBT intervention tailored specifically for PSP (which had not previously been assessed), assess the impact of adding a therapist-moderated online discussion forum on outcomes, and analyze participants' feedback to inform future research and implementation efforts.MethodsIn this randomized trial, we randomly assigned participating PSP (N=107) to access an 8-week transdiagnostic, self-guided ICBT course with or without a built-in online discussion forum. Enrollment and participation were entirely web-based. We assessed changes in depression, anxiety, and posttraumatic stress as well as several secondary outcome measures (eg, treatment engagement and satisfaction) using questionnaires at the pre-enrollment, 8-week postenrollment, and 20-week postenrollment time points. Mixed methods analyses included multilevel modeling and qualitative content analysis.ResultsParticipants engaged minimally with the forum, creating 9 posts. There were no differences in treatment outcomes between participants who were randomly assigned to access the forum (56/107, 52.3%) and those who were not (51/107, 47.7%). Across conditions, participants who reported clinically significant symptoms during enrollment showed large and statistically significant reductions in symptoms (P<.05 and d>0.97 in all cases). Participants also showed good treatment engagement and satisfaction, with 43% (46/107) of participants fully completing the intervention during the course of the study and 96% (79/82) indicating that the intervention was worth their time.ConclusionsPrevious research has shown excellent clinical outcomes for self-guided ICBT accompanied by discussion forums and good engagement with those forums. Although clinical outcomes in our study were excellent across conditions, engagement with the forum was poor, in contrast to previous research. We discuss several possible interpretations of this finding (eg, related to the population under study or the design of the forum). Our findings highlight a need for more research evaluating the impact of online discussion forums and other strategies for improving outcomes and engagement in self-guided ICBT and other digital mental health interventions.Trial registrationClinicalTrials.gov NCT05145582; https://clinicaltrials.gov/study/NCT05145582.
| S-EPMC11358668 | biostudies-literature
Project description:BackgroundOnline communities provide support for individuals looking for help with suicidal ideation and crisis. As community data are increasingly used to devise machine learning models to infer who might be at risk, there have been limited efforts to identify both risk and protective factors in web-based posts. These annotations can enrich and augment computational assessment approaches to identify appropriate intervention points, which are useful to public health professionals and suicide prevention researchers.ObjectiveThis qualitative study aims to develop a valid and reliable annotation scheme for evaluating risk and protective factors for suicidal ideation in posts in suicide crisis forums.MethodsWe designed a valid, reliable, and clinically grounded process for identifying risk and protective markers in social media data. This scheme draws on prior work on construct validity and the social sciences of measurement. We then applied the scheme to annotate 200 posts from r/SuicideWatch-a Reddit community focused on suicide crisis.ResultsWe documented our results on producing an annotation scheme that is consistent with leading public health information coding schemes for suicide and advances attention to protective factors. Our study showed high internal validity, and we have presented results that indicate that our approach is consistent with findings from prior work.ConclusionsOur work formalizes a framework that incorporates construct validity into the development of annotation schemes for suicide risk on social media. This study furthers the understanding of risk and protective factors expressed in social media data. This may help public health programming to prevent suicide and computational social science research and investigations that rely on the quality of labels for downstream machine learning tasks.
| S-EPMC8663675 | biostudies-literature
Project description:BackgroundRates of suicide attempts and deaths are highest on Mondays and these occur more frequently in the morning or early afternoon, suggesting weekly temporal and diurnal variation in suicidal behaviour. It is unknown whether there are similar time trends on social media, of posts relevant to suicide. We aimed to determine temporal and diurnal variation in posting patterns on the Reddit forum SuicideWatch, an online community for individuals who might be at risk of, or who know someone at risk of suicide.MethodsWe used time series analysis to compare date and time stamps of 90,518 SuicideWatch posts from 1st December 2008 to 31st August 2015 to (i) 6,616,431 posts on the most commonly subscribed general subreddit, AskReddit and (ii) 66,934 of these AskReddit posts, which were posted by the SuicideWatch authors.ResultsMondays showed the highest proportion of posts on SuicideWatch. Clear diurnal variation was observed, with a peak in the early morning (2:00-5:00 h), and a subsequent decrease to a trough in late morning/early afternoon (11:00-14:00 h). Conversely, the highest volume of posts in the control data was between 20:00-23:00 h.ConclusionsPosts on SuicideWatch occurred most frequently on Mondays: the day most associated with suicide risk. The early morning peak in SuicideWatch posts precedes the time of day during which suicide attempts and deaths most commonly occur. Further research of these weekly and diurnal rhythms should help target populations with support and suicide prevention interventions when needed most.
| S-EPMC8136175 | biostudies-literature
Project description:BACKGROUND:Medication nonadherence is a major impediment to the management of many health conditions. A better understanding of the factors underlying noncompliance to treatment may help health professionals to address it. Patients use peer-to-peer virtual communities and social media to share their experiences regarding their treatments and diseases. Using topic models makes it possible to model themes present in a collection of posts, thus to identify cases of noncompliance. OBJECTIVE:The aim of this study was to detect messages describing patients' noncompliant behaviors associated with a drug of interest. Thus, the objective was the clustering of posts featuring a homogeneous vocabulary related to nonadherent attitudes. METHODS:We focused on escitalopram and aripiprazole used to treat depression and psychotic conditions, respectively. We implemented a probabilistic topic model to identify the topics that occurred in a corpus of messages mentioning these drugs, posted from 2004 to 2013 on three of the most popular French forums. Data were collected using a Web crawler designed by Kappa Santé as part of the Detec't project to analyze social media for drug safety. Several topics were related to noncompliance to treatment. RESULTS:Starting from a corpus of 3650 posts related to an antidepressant drug (escitalopram) and 2164 posts related to an antipsychotic drug (aripiprazole), the use of latent Dirichlet allocation allowed us to model several themes, including interruptions of treatment and changes in dosage. The topic model approach detected cases of noncompliance behaviors with a recall of 98.5% (272/276) and a precision of 32.6% (272/844). CONCLUSIONS:Topic models enabled us to explore patients' discussions on community websites and to identify posts related with noncompliant behaviors. After a manual review of the messages in the noncompliance topics, we found that noncompliance to treatment was present in 6.17% (276/4469) of the posts.
| S-EPMC5874436 | biostudies-literature
Project description:PurposeThe research examined use of the Internet to seek health information among Hispanics in the United States.MethodsA secondary analysis used the Impact of the Internet and Advertising on Patients and Physicians, 2000-2001, survey data. Pearson's chi(2) test, multivariate analysis of variance (MANOVA), analysis of variance (ANOVA), and independent samples t tests were conducted to test for relationships and differences between facets of Hispanic and non-Hispanic white online health information seeking.ResultsFindings indicated lower Internet health information seeking among Hispanics (28.9%, n=72) than non-Hispanic whites (35.6%, n=883). On a scale of 1 (strongly agree) to 4 (strongly disagree), Hispanics were likely to agree that Internet health information improves understanding of medical conditions and treatments (M=1.65), gives patients confidence to talk to doctors about health concerns (M=1.67), and helps patients get treatment they would not otherwise receive (M=2.23). Hispanics viewed their skills in assessing Internet health information as good. Overall ratings were also positive for items related to sharing Internet health information with a doctor. Conflicting with these findings, Hispanics (M=3.33) and non-Hispanic whites (M=3.46) reported that physician-patient relationships worsened as a result of bringing online health information to a visit (scale 1=a lot better to 5=a lot worse).ConclusionThis study provides further evidence of differences in Internet health information seeking among Hispanics and non-Hispanic whites. Cultural discordance may be a possible explanation for Hispanics' view that the Internet negatively impacts physician-patient relationships. Strategies to increase Hispanics' access to Internet health information will likely help them become empowered and educated consumers, potentially having a favorable impact on health outcomes.
| S-EPMC2268221 | biostudies-literature
Project description:Our objective is to investigate patient needs and understand information gaps in radiology reports using patient questions that were posted on online discussion forums. We leveraged online question and answer platforms to collect questions posted by patients to understand current gaps and patient needs. We retrieved six hundred fifty-nine (659) questions using the following sites: Yahoo Answers, Reddit.com, Quora, and Wiki Answers. The questions retrieved were analyzed and the major themes and topics were identified. The questions retrieved were classified into eight major themes. The themes were related to the following topics: radiology report, safety, price, preparation, procedure, meaning, medical staff, and patient portal. Among the 659 questions, 35.50% were concerned with the radiology report. The most common question topics in the radiology report focused on patient understanding of the radiology report (62 of 234 [26.49%]), image visualization (53 of 234 [22.64%]), and report representation (46 of 234 [19.65%]). We also found that most patients were concerned about understanding the MRI report (32%; n = 143) compared with the other imaging modalities (n = 434). Using online discussion forums, we discussed major unmet patient needs and information gaps in radiology reports. These issues could be improved to enhance radiology design in the future.
| S-EPMC8055745 | biostudies-literature
Project description:BackgroundHIV-associated distal polyneuropathy (HIV-PN) affects large and small sensory nerve fibers and can cause tactile insensitivity. This exploratory study forms part of an effort to apply subsensory electrical nerve stimulation (SENS) to improve tactile sensitivity of patients with HIV-PN. This work presented an opportunity to use a robust protocol to quantitatively describe the vibrotactile sensitivity of individuals with HIV-PN on effective antiretroviral therapy (ART) and correlate these findings with commonly used clinical vibration testing and scoring grades.MethodsThe vibration perception thresholds (VPTs) of 20 patients with HIV-PN at three vibration frequencies (25, 50, and 128 Hz) were measured. We compare the vibration perception threshold (VPT) outcomes to an age- and gender-matched control cohort. We further correlated VPT findings with 128 Hz tuning fork (TF) assessments performed on the HIV-PN participants, accrued as part of a larger study. HIV-PN was defined as having at least one distal symmetrical neuropathic sign, although 18 of 20 had at least two neuropathic signs.ConclusionsHIV-PN participants were found to have lower VPT sensitivity than controls for all three vibration frequencies, and VPT was more sensitive at higher vibration frequencies for both HIV-PN and controls. VPT sensitivity was reduced with older age. Years on ART was correlated with VPT-25 Hz but not with VPT in general. Notably, VPT sensitivity did not correlate with the clinically used 128 Hz TF severity grades. Outcomes of tests for interaction with vibration frequency suggest that HIV-PN pathology does not affect all mechanoreceptors similarly.
| S-EPMC6346661 | biostudies-literature
Project description:BACKGROUND:Despite the significant body of evidence on the efficacy and cost-effectiveness of internet interventions, the implementation of such programs in Portugal is virtually non-existent. In addition, Portuguese psychologists' use and their attitudes towards such interventions is largely unknown. OBJECTIVE:The aim of this study was to explore Portuguese psychologists' knowledge, training, use and attitudes towards internet interventions; to investigate perceived advantages and limitations of such interventions; identify potential drivers and barriers impacting implementation; and study potential factors associated to previous use and attitudes towards internet interventions. METHODS:An online cross-sectional survey was developed by the authors and disseminated by the Portuguese Psychologists Association to its members. RESULTS:A total of 1077 members of the Portuguese Psychologists Association responded to the questionnaire between November 2018 and February 2019. Of these, 37.2% (N=363) were familiar with internet interventions and 19.2% (N=188) considered having the necessary training to work within the field. 29.6% (N=319) of participants reported to have used some form of digital technology to deliver care in the past. Telephone (23.8%; N=256), e-mail (16.2%; N=175) and SMS (16.1%; N=173) services were among the most adopted forms of digital technology, while guided (1.3%; N=14) and unguided (1.5%; N=16) internet interventions were rarely used. Accessibility (79.9%; N=860), convenience (45.7%; N=492) and cost-effectiveness (45.5%; N=490) were considered the most important advantages of internet interventions. Conversely, ethical concerns (40.7%; N=438), client's ICT illiteracy (43.2%; N=465) and negative attitudes towards internet interventions (37%; N=398) were identified as the main limitations. An assessment of participants attitudes towards internet interventions revealed a slightly negative/neutral stance (Median=46.21; SD=15.06) and revealed greater acceptability towards blended treatment interventions (62.9%; N=615) when compared to standalone internet interventions (18.6%; N=181). Significant associations were found between knowledge (?24=90.4; P<.001), training (?24=94.6; P<.001), attitudes (?23=38.4; P<.001) and previous use of internet interventions and between knowledge (?212=109.7; P<.001), training (?212=64.7; P<.001) and attitudes towards such interventions, with psychologists reporting to be ignorant and not having adequate training in the field, being more likely to present more negative attitudes towards these interventions and not having prior experience in its implementation. CONCLUSIONS:This study revealed that most Portuguese psychologists are not familiar with and have no training or prior experience using internet interventions and had a slightly negative/neutral attitude towards such interventions. There was greater acceptability towards blended treatment interventions compared to standalone internet interventions. Lack of knowledge and training were identified as the main barriers to overcome, underlining the need of promoting awareness and training initiatives to ensure internet interventions successful implementation.
| S-EPMC7171568 | biostudies-literature