Department of Pharmacoepidemiology and Clinical Pharmacology, University Utrecht, Utrecht, Netherlands.
National Health Care Institute, Diemen, Netherlands.
J Med Internet Res. 2021 Dec 7;23(12):e27497. doi: 10.2196/27497.
There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful.
We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums.
We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached.
Of the posts assessed, 36.7% (150/409) of posts on Melanoma International Forum, 45.1% (198/439) on MacMillan, and 35.4% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones.
Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment.
人们普遍认识到健康相关生活质量（HRQoL）的重要性。在评估新医疗技术（包括药物）的健康技术评估机构的收益时，此类信息正变得越来越重要。然而，HRQoL 数据通常较为有限，额外的提供此类信息的来源可能会有所帮助。
我们旨在根据公共社交媒体论坛上的在线讨论，确定黑色素瘤患者重要的 HRQoL 主题。
我们从美国和英国确定了 3 个基于网络的公共论坛，即黑色素瘤患者信息页面、黑色素瘤国际论坛和 MacMillan。使用定性方法对他们的帖子进行随机选择和编码，直到达到饱和。
在所评估的帖子中，黑色素瘤国际论坛上有 36.7%（150/409）、MacMillan 上有 45.1%（198/439）、黑色素瘤患者信息页面上有 35.4%（128/362）的帖子主要关注 HRQoL。最常提到的 2 个主题是心理健康和（不确定）。这些主题是基于潜在的和更详细的代码构建的。与恐惧、担忧和焦虑、不确定性和不利影响相关的代码是讨论最多的。
基于网络的论坛是识别特定疾病患者相关 HRQoL 方面的有价值的资源。这些方面可以与现有工具交叉引用，从而提高患者报告的结果测量（包括 HRQoL 问卷）的内容有效性。此外，基于网络的论坛可能为健康技术评估机构提供更全面的了解影响患者 HRQoL 的外部方面。这些方面可能支持对新医疗技术的价值评估，因此有助于为任何价值评估之前的优先主题确定以及范围界定阶段提供信息。
