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

Rachel R J Kalf; Diana M J Delnoij; Bettina Ryll; Marcel L Bouvy; Wim G Goettsch

doi:10.2196/27497

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

Rachel R J Kalf
, Diana M J Delnoij
, Bettina Ryll
, Marcel L Bouvy^*
, Wim G Goettsch

^*Corresponding author for this work

Health Care Governance (HCG)

Utrecht School of Governance
Melanoma Patient Network Europe

Research output: Contribution to journal › Article › Academic › peer-review

6 Citations (Scopus)

42 Downloads (Pure)

Abstract

BACKGROUND: 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.

OBJECTIVE: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums.

METHODS: 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.

RESULTS: 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.

CONCLUSIONS: 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.

Original language	English
Article number	e27497
Journal	Journal of Medical Internet Research
Volume	23
Issue number	12
DOIs	https://doi.org/10.2196/27497
Publication status	Published - 7 Dec 2021

Bibliographical note

Acknowledgments
This study was funded by the Dutch National Health Care Institute

©Rachel R J Kalf, Diana M J Delnoij, Bettina Ryll, Marcel L Bouvy, Wim G Goettsch. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.12.2021.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

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Information Patients With Melanoma Spontaneously Report AboutFinal published version, 183 KBLicence: CC BY

Cite this

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

abstract = "BACKGROUND: 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.OBJECTIVE: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums.METHODS: 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.RESULTS: 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.CONCLUSIONS: 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.",

author = "Kalf, \{Rachel R J\} and Delnoij, \{Diana M J\} and Bettina Ryll and Bouvy, \{Marcel L\} and Goettsch, \{Wim G\}",

note = "Acknowledgments This study was funded by the Dutch National Health Care Institute {\textcopyright}Rachel R J Kalf, Diana M J Delnoij, Bettina Ryll, Marcel L Bouvy, Wim G Goettsch. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.12.2021.",

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AU - Bouvy, Marcel L

AU - Goettsch, Wim G

N1 - Acknowledgments This study was funded by the Dutch National Health Care Institute ©Rachel R J Kalf, Diana M J Delnoij, Bettina Ryll, Marcel L Bouvy, Wim G Goettsch. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.12.2021.

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N2 - BACKGROUND: 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.OBJECTIVE: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums.METHODS: 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.RESULTS: 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.CONCLUSIONS: 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.

AB - BACKGROUND: 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.OBJECTIVE: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums.METHODS: 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.RESULTS: 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.CONCLUSIONS: 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.

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JO - Journal of Medical Internet Research

JF - Journal of Medical Internet Research

IS - 12

M1 - e27497

ER -

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

Abstract

Bibliographical note

UN SDGs

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