Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jan 27, 2021
Date Accepted: Sep 25, 2021
Date Submitted to PubMed: Dec 8, 2021
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
What really matters to melanoma patients: Case study on what melanoma patients spontaneously report about health-related quality of life on online forums
ABSTRACT
Background:
There is general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for value assessments of health technology assessment (HTA) agencies in evaluating the benefit of new health technologies, including medicines. However, HRQoL data is often limited available and additional sources providing this type of information may be helpful.
Objective:
We identified HRQoL topics important to melanoma patients based on online discussions using public social media forums.
Methods:
Three public online forums from the United States and the United Kingdom were identified, namely MPIP, MIF and MacMillan. Posts were selected randomly and coded until saturation.
Results:
Of the posts assessed, a total of 150 posts on MIF, 198 on MacMillan and 128 on MPIP focused on HRQoL. The two themes most frequently mentioned were: ‘mental health’ and ‘(un)certainty’. Themes were constructed based on underlying and more detailed codes. Codes related to ‘fear, worry and anxiety’, ‘uncertainty’ and ‘unfavourable effects’ were most often discussed.
Conclusions:
Online forums are a valuable source to identify relevant HRQoL aspects to patients for a given disease. These aspects could be cross-referenced to existing tools and may improve the content validity of patient reported outcome measures, including HRQoL questionnaires. In addition, online forums may provide HTA agencies with a more holistic understanding of external aspects affecting patients' 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 prior to any value assessment.
Citation
