Dataset Information

Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.

ABSTRACT:

Background and aims

In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS.

Methods

A 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch.

Results

Eighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source.

Conclusion

We describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs.

SUBMITTER: Synnot AJ

PROVIDER: S-EPMC6266475 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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Publications

Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.

Synnot Anneliese J AJ Hawkins Melanie M Merner Bronwen A BA Summers Michael P MP Filippini Graziella G Osborne Richard H RH Shapland Sue D P SDP Cherry Catherine L CL Stuckey Rwth R Milne Catherine A CA Mosconi Paola P Colombo Cinzia C Hill Sophie J SJ

Health science reports 20180306 3

<h4>Background and aims</h4>In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people a ...[more]

PMID: 30623063

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Project description:BackgroundPersons with multiple sclerosis (MS) are confronted by an overwhelming amount of online health information, which can be valuable but also vary in quality and aim. Therefore, it is of great importance for developers and providers of eHealth information to understand its impact on the users. The eHealth Impact Questionnaire (eHIQ) has been developed in the United Kingdom to measure the potential effects of health and experimental information websites. This contains user's general attitudes towards using the internet to gain health information and attitudes towards a specific health related website. The self-complete questionnaire is divided into two independently administered and scored parts: the 11-item eHIQ part 1 and the 26-item eHIQ part 2. This study aimed to validate the psychometric properties of the German version of the eHealth Impact Questionnaire (eHIQ-G).Methods162 people with multiple sclerosis browsed one of two possible websites containing information on MS and completed an online survey. Internal consistency was assessed by Cronbach's alpha and structural validity by Confirmatory Factor Analysis. Construct validity was examined by assessing correlations with the reference instruments eHealth Literacy Questionnaire and the General Self-Efficacy Scale measuring related, but dissimilar constructs. Moreover, we investigated the mean difference of the eHIQ-G score between the two websites. Data were analyzed using SPSS and AMOS software.ResultsThe eHIQ-G subscales showed high internal consistency with Cronbach's alpha from 0.833 to 0.885. The 2-factor model of eHIQ part 1 achieved acceptable levels of goodness-of-fit indices, whereas the fit for the 3-factor model of eHIQ part 2 was poor and likewise for the alternative modified models. The correlations with the reference instruments were 0.08-0.62 and as expected. Older age was related with lower eHIQ part 1 score, whereas no significant effect was found for education on eHIQ part 1. Although not significant, the website 'AMSEL' reached higher mean scores on eHIQ part 2.ConclusionsThe eHIQ-G has good internal consistency, and sufficient structural and construct validity. This instrument will facilitate the measurement of the potential impact of eHealth tools.

Project description:BackgroundIncreasingly, older adults and their informal caregivers are using the Internet to search for health-related information. There is a proliferation of health information online, but the quality of this information varies, often based on exaggerated or dramatic findings, and not easily comprehended by consumers. The McMaster Optimal Aging Portal (Portal) was developed to provide Internet users with high-quality evidence about aging and address some of these current limitations of health information posted online. The Portal includes content for health professionals coming from three best-in-class resources (MacPLUS, Health Evidence, and Health Systems Evidence) and four types of content specifically prepared for the general public (Evidence Summaries, Web Resource Ratings, Blog Posts, and Twitter messages).ObjectiveOur objectives were to share the findings of the usability evaluation of the Portal with particular focus on the content features for the general public and to inform designers of health information websites and online resources for older adults about key usability themes.MethodsData analysis included task performance during usability testing and qualitative content analyses of both the usability sessions and interviews to identify core themes.ResultsA total of 37 participants took part in 33 usability testing sessions and 21 focused interviews. Qualitative analysis revealed common themes regarding the Portal's strengths and challenges to usability. The strengths of the website were related to credibility, applicability, browsing function, design, and accessibility. The usability challenges included reluctance to register, process of registering, searching, terminology, and technical features.ConclusionsThe study reinforced the importance of including end users during the development of this unique, dynamic, evidence-based health information website. The feedback was applied to iteratively improve website usability. Our findings can be applied by designers of health-related websites.

Project description:BackgroundVocal disorders are frequent in people with multiple sclerosis (MS). Cognitive impairment, fatigue, depression, and other clinical characteristics can be associated with treatment effectiveness in rehabilitation. Finding baseline characteristics that identify those who are responding to treatment can help the clinical decision-making process, which can then help improve the effectiveness of voice treatment. We developed a model to identify factors associated with treatment-related improvement on voice intensity in people with MS.MethodsData are from a randomized controlled trial of the effects of voice therapy. Forty-four people with MS were enrolled and randomized to receive Lee Silverman Voice Treatment LOUD, specifically addressing voice intensity, or conventional speech-therapy group. Voice intensity (dB) was measured during monologue before and after treatment and was used to differentiate those who responded (posttreatment voice intensity > 60 dB) from those who did not. Possible associated factors were cognitive impairment, fatigue, depression, disability, and disease duration. Associations were assessed by univariate logistic regression and univariate and multivariate linear regressions.ResultsMean ± SD monologue voice intensity is improved in the whole sample (before rehabilitation: 51.8 ± 4.2 dB; and after rehabilitation 57.0 ± 6.5 dB; P < .001), and 11 people with MS (27.5%) responded to treatment. Specificity of treatment was associated with the return to normal voice intensity (OR, 14.28; 95% CI, 12.17-309.56) and we found a linear association between voice improvement and the specificity of treatment (6.65 [SE = 1.54] dB; P < .05). Moreover, the analysis revealed a nonlinear association between improvement and fatigue, suggesting increased benefits for people with MS with moderate fatigue. Other factors were not significantly associated with treatment effectiveness.ConclusionsModerate fatigue and the specificity of the intervention seem to be key factors associated with clinically relevant improvement in voice intensity even in people with MS with a high level of disability and long disease duration.

Dataset Information

Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.

Background and aims

Methods

Results

Conclusion

Publications

Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.

Similar Datasets

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