Congenital Upper-Extremity Differences: A Thematic Analysis of On-Line Discussion Boards

Cogsil, Taylor; Kim, Dongyeon J.; Morris, Marie; Wall, Lindley B.

doi:10.1016/j.jhsa.2020.08.006

Cited by 6 publications

(8 citation statements)

References 30 publications

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“…This resulted in various open, axial, and selective codes per thread. We believe that analyzing each post allowed us to capture the theme contained in each post, and this is consistent with the methodology used in other studies seeking to identify common ideas through thematic analysis [6,7,17].…”

Section: Methodssupporting

confidence: 72%

“…That is, rather than seeking out the technical aspects of amputation or limb salvage, contributors were primarily interested in others’ experiences with recovery from surgery, complications, and long-term results. The desire to share experiences was similarly identified in other orthopaedic reports studying online community postings [6, 17].…”

Section: Discussionmentioning

confidence: 68%

“…These processes often result in anxiety for patients with sarcomas and their families, which is reflected in our findings. Compared with prior orthopaedic studies investigating rare conditions such as brachial plexus injury and congenital upper extremity deformities, those with sarcoma expressed more anxiety about the evaluation and surveillance processes [6, 17], reflecting the possible increased role of patient-facing materials that explain the utility of various imaging and biopsy studies in diagnosis and follow-up. Additionally, our analysis of treatment and recovery posts revealed that online discussion forums supplement education provided by physicians.…”

Section: Discussionmentioning

confidence: 99%

“…Discussion forums and online support groups additionally allow patients to seek and share information with others who are facing similar illnesses. Prior studies have analyzed the use of discussion boards in the setting of other illnesses or injuries, including brachial plexus injury and congenital upper extremity differences including congenital malformations such as radial longitudinal deficiency, ulnar dimelia, and polydactyly, among others [6,17].…”

Section: Introductionmentioning

confidence: 99%

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Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients’ Experiences: A Thematic Analysis

Paulson

Stein

Kendal

et al. 2023

Clin Orthop Relat Res

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Background Online discussion forums allow individuals who otherwise may be strangers to create a community where they can seek and share information. Patients with bone sarcomas and their support networks use discussion forums dedicated to cancer support. There is a paucity of published reports regarding the care experience of patients with bone sarcomas because studies on online discussion groups have primarily focused on some of the more common cancers, including breast and prostate cancer. Understanding commonly discussed themes among patients with bone sarcomas would allow treating physicians to have a better understanding of patient concerns when providing patient education and counseling. Question/purpose We performed this study to review posts from bone sarcoma internet discussion boards to establish common themes related to the care experience of patients with sarcomas. Methods Online discussion forums were identified using the search term “sarcoma discussion forum.” After identifying 12 websites, we excluded closed forum groups, websites with missing or invalid links to forums, and nonpublic forums, such as groups on Facebook. These websites include profiles and photos that are personal, and sufficient author anonymity could not be achieved for this study. Posts written between January 1, 2012, and May 1, 2022, posted on five discussion boards were reviewed and collected until we reached a point of data saturation in which we agreed that the collection of additional posts would not reveal new themes. Discussion threads were filtered to identify posts pertaining to the most common bone sarcomas: chondrosarcoma, Ewing sarcoma, and osteosarcoma. Grounded theory—the methodology of repeated analyses of qualitative data to identify recurring themes or concepts—was used to analyze posts. Caregiver posts were delineated from patient posts and categorized separately for subgroup analysis. Grounded theory, although a qualitative method, endeavors to integrate the strengths inherent in quantitative methods with qualitative approaches. Grounded theory categorizes words, language, and the meanings these imply and seeks to organize and reduce the data gathered into themes or essences, which, in turn, can be fed into descriptions, models, or theories. Our analysis used three reviews of text to assign and group codes based on repeating ideas or concepts. The first review (open coding) aims to assign codes based on the verbatim text included by the author to capture the specific thoughts and ideas of the post. The second review (axial coding) aims to consolidate the ideas of posts by applying broader concepts to each post. The third and final review (selective coding) aims to further consolidate the themes of each post by trying to embody the main message contained in a post. A total of 570 posts from 139 threads were collected and analyzed using grounded theory. Twenty-five axial codes and four selective codes were created. We defined data saturation by the absence of a new open code in the analysis of a block of 50 posts to ensure that signals of saturation were not accepted too early in the analysis. Results The four selective codes included emotional aspects or connecting with others, information support: diagnosis, information support: treatment, and information support: recovery. Of these four codes, emotional aspects and connecting with others was the most prevalent theme (78% [445 of 570] of posts) followed by information support: treatment (49% [282 of 570] of posts). Information support: diagnosis and information support: recovery were each captured in 15% of posts. Conclusion Analysis of posts reveals that the two most common themes involve seeking out emotional support and information about the experiences of others with various treatment modalities. Although most of the posts we assessed contained experiential information and emotional support rather than directed medical advice, future studies should assess the accuracy of information shared among online sarcoma forums. Clinical Relevance Physicians caring for patients with sarcomas should not only address patient concerns related to medical care, but also provide emotional support directly and assist patients by providing resources to peer support outlets, including online discussion forums. Although we cannot ascertain the proportion of patients who use online sites given the anonymity of posts included, these findings suggest common experiential themes across patients with sarcomas outside their doctors’ offices. It is important that providers be aware of reputable forums to provide as resources for their patients. The Musculoskeletal Tumor Society may further benefit from endorsing one or more of these forums and providing physician oversight to monitor misinformation.

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Section: Methodssupporting

confidence: 72%

Section: Discussionmentioning

confidence: 68%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients’ Experiences: A Thematic Analysis

Paulson

Stein

Kendal

et al. 2023

Clin Orthop Relat Res

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“…With inaccurate information, families may experience more unnecessary stress if they believe their child may need treatment when they do not or may have associated conditions when they do not. We understand that families will continue to use news and social media for emotional support and to connect with others with similar conditions 5. Thus, it is important that they are able to search with an accurate diagnosis to ensure they are receiving complete and appropriate information.…”

Section: Discussionmentioning

confidence: 99%

Media Depiction of Birth Differences of the Upper Extremity: Accuracy of Shared Diagnoses

Frantz

Wall

Goldfarb

2022

Journal of Pediatric Orthopaedics

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Background: To assess the diagnostic accuracy of public representation of congenital differences of the upper extremities. We hypothesized that there is an over-diagnosis of certain diagnoses such as amniotic constriction band and under-diagnosis of others such as symbrachydactyly and radial deficiency. Methods: Publicly shared images and associated diagnoses were searched on publicly available news media and social media accounts published from October 2018 through November 2021 using key terms such as “amniotic band syndrome,” “congenital arm amputation,” and “3D prosthetic arm” as well as The Lucky Fin Project account on Instagram. The images were collected and reviewed by 2 congenital hand surgeons. The surgeons’ diagnoses were then compared to the reported diagnoses associated with each image to assess accuracy. Results: A total of 100 images were collected with the reported diagnosis associated with each image. Two images were removed due to evidence of prior surgery. The hand surgeons’ diagnosis disagreed with the reported diagnosis in 60 of 98 (61%) images. Of those 60 inaccurate diagnoses, 2/3 were reported as amniotic constriction band. Conclusions: Media and social media depictions of congenital upper extremity differences are frequently inaccurate, and our search demonstrated that the amniotic constriction band is the most commonly reported, inaccurate diagnosis. Accuracy of diagnosis in public media is important given the impact a diagnosis has on those viewing and sharing the images. Level of Evidence: Level IV, diagnostic.

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Thematic analysis of online discussion forums for soft tissue sarcomas

Stein,

Paulson,

Kendal

et al. 2023

Cancer Treatment and Research Communications

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Congenital Upper-Extremity Differences: A Thematic Analysis of On-Line Discussion Boards

Cited by 6 publications

References 30 publications

Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients’ Experiences: A Thematic Analysis

Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients’ Experiences: A Thematic Analysis

Media Depiction of Birth Differences of the Upper Extremity: Accuracy of Shared Diagnoses

Thematic analysis of online discussion forums for soft tissue sarcomas

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