Dataset Information

Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study.

ABSTRACT: PURPOSE:Development of innovative drugs for melanoma is occurring rapidly. Incremental gains in overall survival amongst innovative products may be difficult to measure in clinical trials, and their use may be associated with increased toxicity profiles. Therefore, HTA agencies increasingly require information on HRQoL for the assessment of such drugs. This study explored the feasibility of social media to assess patient perspectives on HRQoL in melanoma, and whether current cancer- and melanoma-specific HRQoL questionnaires represent these perspectives. METHODS:A survey was distributed on the social media channels of Melanoma Patient Network Europe to assess melanoma patients' perspectives regarding HRQoL. Two researchers independently conducted content analysis to identify key themes, which were subsequently compared to questions from one current cancer-specific and two melanoma-specific HRQoL questionnaires (i.e. EORTC QLQ-C30, EORTC QLQ-MEL38, FACT-M). RESULTS:In total, 72 patients and 17 carers completed the survey. Patients indicated that family, having a normal life, and enjoying life were the three most important aspects of HRQoL for them. Carers indicated that being capable, having manageable adverse events, and being pain-free were the three most important aspects of HRQoL for patients. Respondents seem to find some questions from HRQoL questionnaires relevant (e.g. 'Have you felt able to carry on with things as normal?') and others less relevant (e.g. 'Have you had swelling near your melanoma site?'). Additionally, wording may differ between patients and HRQoL questionnaires, whereby patients generally use a more positive tone. CONCLUSIONS:Social media may provide a valuable tool in assessing patient perspectives regarding HRQoL. However, differences seem to emerge between patient and carer perspectives. Additionally, patient perspectives did not seem to fully correlate to questions posed in cancer- (i.e. EORTC QLQ-C30) and melanoma-specific (i.e. EORTC QLQ-MEL38, FACT-M) HRQoL questionnaires examined.

SUBMITTER: Makady A

PROVIDER: S-EPMC6267816 | biostudies-other | 2018 Nov

REPOSITORIES: biostudies-other

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Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study.

Makady Amr A Kalf Rachel R J RRJ Ryll Bettina B Spurrier Gilliosa G de Boer Anthonius A Hillege Hans H Klungel Olaf H OH Goettsch Wim W

Health and quality of life outcomes 20181129 1

<h4>Purpose</h4>Development of innovative drugs for melanoma is occurring rapidly. Incremental gains in overall survival amongst innovative products may be difficult to measure in clinical trials, and their use may be associated with increased toxicity profiles. Therefore, HTA agencies increasingly require information on HRQoL for the assessment of such drugs. This study explored the feasibility of social media to assess patient perspectives on HRQoL in melanoma, and whether current cancer- and ...[more]

PMID: 30497502

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Project description:BackgroundImmune checkpoint inhibitors (ICIs) are increasingly used to treat several types of tumors. Impact of this emerging therapy on patients' health-related quality of life (HRQoL) is usually collected in clinical trials through standard questionnaires. However, this might not fully reflect HRQoL of patients under real-world conditions. In parallel, users' narratives from social media represent a potential new source of research concerning HRQoL.ObjectiveThe aim of this study is to assess and compare coverage of ICI-treated patients' HRQoL domains and subdomains in standard questionnaires from clinical trials and in real-world setting from social media posts.MethodsA retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experiences with ICIs between January 2011 and August 2018. Automatic and manual extractions were implemented to create a corpus where domains and subdomains of HRQoL were classified. These annotations were compared with domains covered by 2 standard HRQoL questionnaires, the EORTC QLQ-C30 and the FACT-G.ResultsWe identified 150 users who described their own experience with ICI (89/150, 59.3%) or that of their relative (61/150, 40.7%), with 137 users (91.3%) reporting at least one HRQoL domain in their social media posts. A total of 8 domains and 42 subdomains of HRQoL were identified: Global health (1 subdomain; 115 patients), Symptoms (13; 76), Emotional state (10; 49), Role (7; 22), Physical activity (4; 13), Professional situation (3; 9), Cognitive state (2; 2), and Social state (2; 2). The QLQ-C30 showed a wider global coverage of social media HRQoL subdomains than the FACT-G, 45% (19/42) and 29% (12/42), respectively. For both QLQ-C30 and FACT-G questionnaires, coverage rates were particularly suboptimal for Symptoms (68/123, 55.3% and 72/123, 58.5%, respectively), Emotional state (7/49, 14% and 24/49, 49%, respectively), and Role (17/22, 77% and 15/22, 68%, respectively).ConclusionsMany patients with cancer are using social media to share their experiences with immunotherapy. Collecting and analyzing their spontaneous narratives are helpful to capture and understand their HRQoL in real-world setting. New measures of HRQoL are needed to provide more in-depth evaluation of Symptoms, Emotional state, and Role among patients with cancer treated with immunotherapy.

Project description:BackgroundSocial media can be used to engage consumers in hospital service design and quality improvement (QI) activities, however its uptake may be limited by a lack of guidance to support implementation. This article presents the perceived barriers and enablers in using social media for consumer engagement derived from an interview study with public hospital stakeholders.MethodsSemi-structured interviews with 26 Australian hospital service providers and consumer representatives. Data were analysed using a deductive content analysis method.ResultsData were collected between October 2019 and April 2020. Facebook was the platform most commonly used for consumer engagement activities. Barriers and enablers to social media-based consumer engagement were identified. The barrier themes were (1) fears and concerns; (2) lack of skills and resources for social media engagement; (3) lack of organisational processes and support; and (4) problems with social media platforms and the changing social media landscape. The enabler themes were: (1) hospitals facilitating access and use; (2) making discussions safe; (3) cultivating a social media community; and (4) building on success.ConclusionUsing social media to facilitate consumer engagement in hospital service design and QI activities is feasible and acceptable to service providers and consumers. Hospitals and their executives can create a supportive environment for social media-based engagement activities through developing clear governance systems and providing training and support to all users. Consumers need to be involved in co-designing social media-based activities and determining which forms of engagement are accessible and acceptable. For some consumers and service providers, barriers such as a lack of resources and distrust of social media companies might mean that social media-based engagement will be less acceptable for them. Because of this it is important that hospitals provide complementary methods of engagement (eg, face-to-face) alongside social media-based methods.

Project description:Young people are increasingly turning to social media for health-related information in areas such as physical activity, diet/nutrition and body image. Yet, there are few robust empirical accounts of the content and form of the health-related material young people access and attend to, or the health-related content they create and share. Furthermore, there is little guidance from research or policy on young people's engagement with health-related social media. This leaves many relevant adults ill-equipped to protect young people from the negative influences of social media and to optimize the potential of social media as a medium for health promotion. This article presents new evidence on young people's engagement with social media and the influences they report on their health-related behaviors. The research was undertaken with 1296 young people (age 13-18) using a participatory mixed methods design. Initially, a public pedagogy [Giroux, 2004. Public pedagogy and the politics of neo-liberalism: Making the political more pedagogical. Policy Futures in Education, 2, 494-503] theoretical framework was used to guide data analysis but this was found to be limiting. An adapted framework was developed, therefore, drawing on Miller et al. [2016. How the world changed social media. London: UCL Press] and Lomborg [2011. Social media as communicative genres. Journal of Media and Communication Research, 51, 55-71] to account for the unique ways in which pedagogy operates in a social media context. Young people accessed and used a range of health-related information on body transformations, diet/nutritional supplements or recipes and workouts/exercises, albeit in different ways. Moreover, young people identified five forms of content that influenced their understandings and behaviours: (i) automatically sourced content; (ii) suggested or recommended content; (iii) peer content; (iv) likes; (v) reputable content. The findings also suggest that relevant adults can reduce risk and realize more of the positive impacts of social media for young people by focusing on content, and the ways in which content is shaped in the interplay between interactive functionalities of social media (e.g. likes and followers) and young people's social uses of social media (e.g. friends, information).

Dataset Information

Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study.

Publications

Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study.

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