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

Abstract

PurposeDevelopment 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.MethodsA 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).ResultsIn 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.ConclusionsSocial 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.Electronic supplementary materialThe online version of this article (10.1186/s12955-018-1047-z) contains supplementary material, which is available to authorized users.

Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study

“…These public web-based forums provide peer support for a range of medical conditions, allowing the patients to share their experiences and provide information [ 16 - 18 ]. In a previous study, we collected patient perspectives on HRQoL from private social media sources, including a private Facebook (Facebook, Inc) group for patients with melanoma [ 9 ]. Using a different type of social media in this study allows for comparisons between the different sources of social media regarding the HRQoL topics discussed.…”

“…We coded the posts using the coding scheme developed in our previous study [ 9 ], in which members of the Melanoma Patient Network Europe, an established patient network for patients with melanoma, caregivers, and advocates, were approached via its multiple social media channels to anonymously complete a 25-item web-based survey. In this survey, questions regarding sociodemographic and clinical characteristics and several open questions exploring patient and caregiver perspectives on HRQoL (eg, “What is HRQoL in melanoma for you?”, “Name 3 things that deteriorate your/the melanoma patient’s HRQoL today?”) were posed.…”

“…Patients often use social media to gather information on their health condition and treatment options, to share their experiences, and to find social support [ 6 - 8 ]. Previous research has also shown that social media may help identify HRQoL topics of importance to patients, prioritize the topics most relevant to patients, or help in the distribution of HRQoL questionnaires [ 9 - 12 ]. Melanoma is an area of oncology that has seen the rapid introduction of several classes of new therapeutics with new modes of action, increasing the likelihood of existing HRQoL tools failing to capture patient-relevant outcomes [ 13 - 15 ].…”

Health-related quality of life using the FACT-M questionnaire in patients with malignant melanoma: A systematic review

“…Finally, 20 full-text articles were screened and assessed for eligibility. Makady et al [30] was excluded for being a feasibility study using social media for measuring HRQOL, Swartz et al [31] was excluded for not using the established FACT-M questionnaire, and Davies et al [32] and Dieng et al [33] was excluded for not reporting any structured FACT-M data. See Fig.…”

Health‐related quality of life in patients with melanoma – characterization of a Swedish cohort

“…Dear Editor , Only a few studies have investigated health‐related quality of life (HR‐QoL) in patients with melanoma (reviewed in Chernyshov et al …”