Using social media to collect patient perspectives on quality of life: A feasibility study

Background: Development of innovative drugs for melanoma is occurring rapidly. These drugs are often associated with marginal prolongation of overall survival, as well as increased toxicity profiles. Therefore, HTA agencies increasingly require information on health related quality of life (HRQoL) for the assessment of such drugs. Objectives: This study explored the potential of using social media to assess patient perspectives on HRQoL in melanoma, and whether current cancer-and melanoma-specific HRQoL questionnaires represent these patient perspectives. Methods: A web-based survey with open-ended questions to assess melanoma patients' perspectives regarding HRQoL was distributed on social media channels of Melanoma Patient Network Europe (Facebook, Twitter, and LinkedIn). Two researchers independently assessed completed surveys and conducted content analysis to identify key themes. Themes identified were subsequently compared with questions used in three current HRQoL questionnaires (EORTC QLQC30, 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. 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 (eg, “Have you felt able to carry on with things as normal?”) and others less relevant (eg, “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. For example, FACT-M states “I have a lack of energy,” while patients rather focus on “having enough energy.” Conclusions: Social media may provide a valuable tool in assessing patient perspectives regarding HRQoL. However, differences emerge between patient and carer perspectives. Additionally, cancer-and melanoma-specific HRQoL questionnaires do not seem to correlate fully with patient perspectives