Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events
Objective: The online environment is an ideal setting to understand how many women seek, receive, and understand information about cancer treatment. The purpose of this study was to understand women’s needs and information-seeking around Poly ADP ribose polymerase (PARP) inhibitors, an oral medicati...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2022-10-01
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| Series: | Gynecologic Oncology Reports |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2352578922001308 |
| _version_ | 1828105628787146752 |
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| author | Karen A. Monuszko Laura J. Fish Dorinda Sparacio Christina Lizaso Kathryn Burn Natalie E. Wickenheisser Larissa A. Meyer Shelby D. Reed Brittany A. Davidson Laura J. Havrilesky |
| author_facet | Karen A. Monuszko Laura J. Fish Dorinda Sparacio Christina Lizaso Kathryn Burn Natalie E. Wickenheisser Larissa A. Meyer Shelby D. Reed Brittany A. Davidson Laura J. Havrilesky |
| author_sort | Karen A. Monuszko |
| collection | DOAJ |
| description | Objective: The online environment is an ideal setting to understand how many women seek, receive, and understand information about cancer treatment. The purpose of this study was to understand women’s needs and information-seeking around Poly ADP ribose polymerase (PARP) inhibitors, an oral medication commonly prescribed as maintenance therapy at the conclusion of primary chemotherapy for ovarian cancer. Methods: We held online discussion events with two social media communities, #gyncsm social media on Twitter and the Smart Patients ovarian cancer community, in November 2020, to sample ovarian cancer patient perceptions of, and information seeking about PARP inhibitors. Focused questions were presented to both communities, with participants able to answer and elaborate upon these questions, as well as to add their own comments or topics. Qualitative content analysis was performed on the transcripts from the two online events. Results: A total of 254 unique tweets and 71 messages were generated from the Twitter and Smart Patients conversations, respectively. The majority of the content from these two events could be categorized into five major themes: (1) concerns about side effects, (2) expectations of benefit, (3) desire for more information regarding clinical trials, ) (4) desire to better understand the relationship between mutation status and PARP inhibitor effectiveness, and (5) financial toxicity. Misinformation was rarely identified. Conclusions: Women with ovarian cancer who are engaged in online patient communities have numerous educational needs regarding PARP inhibitors. Given the complexity of clinical research on PARP inhibitors, patients would likely benefit from patient-centered educational tools. |
| first_indexed | 2024-04-11T10:06:01Z |
| format | Article |
| id | doaj.art-30fe3459cc474d6ab1cc27abea00e77d |
| institution | Directory Open Access Journal |
| issn | 2352-5789 |
| language | English |
| last_indexed | 2024-04-11T10:06:01Z |
| publishDate | 2022-10-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Gynecologic Oncology Reports |
| spelling | doaj.art-30fe3459cc474d6ab1cc27abea00e77d2022-12-22T04:30:13ZengElsevierGynecologic Oncology Reports2352-57892022-10-0143101050Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community eventsKaren A. Monuszko0Laura J. Fish1Dorinda Sparacio2Christina Lizaso3Kathryn Burn4Natalie E. Wickenheisser5Larissa A. Meyer6Shelby D. Reed7Brittany A. Davidson8Laura J. Havrilesky9Duke University School of Medicine, Durham, NC 27710, USADepartment of Family Medicine and Community Health, Duke University School of Medicine, Durham, NC 27710, USA; Duke Cancer Institute, Durham, NC 27710, USA#gyncsm (Gynecologic Cancer Social Media) Community, USA#gyncsm (Gynecologic Cancer Social Media) Community, USASmart Patients Online Community, USADuke University School of Medicine, Durham, NC 27710, USAGynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USADuke Clinical Research Institute, Durham, NC 27710, USA; Department of Population Health Sciences, Duke University, Durham, NC 27710, USADivision of Gynecologic Oncology, Duke Cancer Institute, Durham, NC 27710, USADivision of Gynecologic Oncology, Duke Cancer Institute, Durham, NC 27710, USA; Corresponding author at: Box 3079 DUMC, Durham, NC 27710, USA.Objective: The online environment is an ideal setting to understand how many women seek, receive, and understand information about cancer treatment. The purpose of this study was to understand women’s needs and information-seeking around Poly ADP ribose polymerase (PARP) inhibitors, an oral medication commonly prescribed as maintenance therapy at the conclusion of primary chemotherapy for ovarian cancer. Methods: We held online discussion events with two social media communities, #gyncsm social media on Twitter and the Smart Patients ovarian cancer community, in November 2020, to sample ovarian cancer patient perceptions of, and information seeking about PARP inhibitors. Focused questions were presented to both communities, with participants able to answer and elaborate upon these questions, as well as to add their own comments or topics. Qualitative content analysis was performed on the transcripts from the two online events. Results: A total of 254 unique tweets and 71 messages were generated from the Twitter and Smart Patients conversations, respectively. The majority of the content from these two events could be categorized into five major themes: (1) concerns about side effects, (2) expectations of benefit, (3) desire for more information regarding clinical trials, ) (4) desire to better understand the relationship between mutation status and PARP inhibitor effectiveness, and (5) financial toxicity. Misinformation was rarely identified. Conclusions: Women with ovarian cancer who are engaged in online patient communities have numerous educational needs regarding PARP inhibitors. Given the complexity of clinical research on PARP inhibitors, patients would likely benefit from patient-centered educational tools.http://www.sciencedirect.com/science/article/pii/S2352578922001308Ovarian cancerPARP-inhibitorsSocial mediaPatient education |
| spellingShingle | Karen A. Monuszko Laura J. Fish Dorinda Sparacio Christina Lizaso Kathryn Burn Natalie E. Wickenheisser Larissa A. Meyer Shelby D. Reed Brittany A. Davidson Laura J. Havrilesky Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events Gynecologic Oncology Reports Ovarian cancer PARP-inhibitors Social media Patient education |
| title | Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events |
| title_full | Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events |
| title_fullStr | Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events |
| title_full_unstemmed | Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events |
| title_short | Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events |
| title_sort | understanding the needs and perspectives of ovarian cancer patients when considering parp inhibitor maintenance therapy findings from two online community events |
| topic | Ovarian cancer PARP-inhibitors Social media Patient education |
| url | http://www.sciencedirect.com/science/article/pii/S2352578922001308 |
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