| Literature DB >> 31011680 |
Joel Thomas1, Arpan V Prabhu2,3, Dwight E Heron3, Sushil Beriwal3.
Abstract
PURPOSE: Reddit is a social media platform that allows health care professionals (HPs) to anonymously interact with patients. We analyzed content about radiation therapy (RT) on Reddit. METHODS AND MATERIALS: Reddit.com/r/cancer was queried with 20 search terms related to RT: IMRT, 3D-CRT, SBRT, EBRT, XRT, radiation, radiotherapy, RT, radio, rad, rads, gamma, gamma knife, gammaknife, cyber knife, cyberknife, cyber, brachytherapy, brachy, and cobalt. The search aimed to identify all posts discussing RT. A random sample of posts and their top 3 comments was selected to generate qualitative thematic codes per author consensus, which were used to characterize all posts and their top 3 voted comments. Posts were analyzed for time to first reply, mention of any specific RT modality, whether a self-identified HP responded, and time to first highly voted comment by an HP.Entities:
Year: 2019 PMID: 31011680 PMCID: PMC6460228 DOI: 10.1016/j.adro.2019.01.007
Source DB: PubMed Journal: Adv Radiat Oncol ISSN: 2452-1094
Descriptions of final codes
| Code | Description |
|---|---|
| Bone marrow transplant | Bone marrow transplant for malignancy |
| Brachytherapy | Brachytherapy for malignancy |
| Breast disease | Primary breast disease or side effect at breast |
| Chemotherapy comparison | Comparing/contrasting radiation to chemotherapy |
| CNS | Primary CNS disease or side effects at CNS |
| Cyberknife | CyberKnife for malignancy |
| EBRT | EBRT not otherwise specified for malignancy |
| Family | Referring to family (eg, for support or posting on behalf of family member) |
| Gammaknife | GammaKnife for malignancy |
| GI disease | Primary GI disease or side effects at GI tract |
| GU disease | Primary GU disease or side effects at GU tract (predominantly prostate but also includes rectum, penis, etc.) |
| Gynecologic disease | Primary gynecologic disease or gynecologic side effects |
| Head and neck disease | Primary head and neck disease or head and neck side effects |
| Hematologic disease | Primary hematologic disease or hematologic side effects |
| Humor | Humorous content (eg, jokes, memes) |
| IGRT | IGRT for malignancy |
| IMRT | IMRT for malignancy |
| Lung disease | Primary lung disease or lung side effects |
| Media | Use of social media (eg, Facebook, YouTube, Instagram) or reference to news media |
| Miscellaneous organ | Angiosarcoma, keloids |
| Miscellaneous modality | Modalities not otherwise specified (eg, Cobalt-60, tomotherapy) for malignancy |
| Offering social support | Explicitly responding to emotional needs |
| Post-treatment | Explicit reference to prior finished treatment |
| Proton therapy | Proton beam therapy for malignancy |
| SBRT | SBRT for malignancy |
| Seeking social support | Explicitly stating emotional state or needs and requesting support |
| Social, economic, political | Content about socioeconomic or political aspects of cancer care (eg, financing, insurance, and health care reform) |
| Sharing information | Content predominantly offered for factual clarification (vs∖emotional support) |
| Skin disease | Melanoma and nonmelanoma skin cancer primary disease or skin side effects |
| Treatment day motif | Recurrent motifs associated with receiving radiation therapy (eg, radiation oncologist, catheters, and brachytherapy seeds) |
| Toxicities | Side effects related to any oncologic treatment (eg, chemotherapy, radiation therapy) |
| Treatment chronology | Clarification of history of present illness |
| Treatment question | Question about treatment for factual clarification |
| Whole brain radiation | Whole brain radiation for malignancy |
Abbreviations: CNS = central nervous system; EBRT = external beam radiation therapy; GI = gastrointestinal; GU = genitourinary; IGRT = image guided radiation therapy; IMRT = intensity modulated radiation therapy; SBRT = stereotactic body radiation therapy.
Fig. 1Codes about posts on reddit.com/r/cancer related to radiation therapy.
Fig. 2Codes about comments on posts on reddit.com/r/cancer related to radiation.
Post and comment code distribution
| Post code | Comment code | ||||
|---|---|---|---|---|---|
| Code | Frequency | Percent | Code | Frequency | Percent |
| Treatment question | 126 | 14.6 | Sharing information | 357 | 24.4 |
| Treatment chronology | 118 | 13.7 | Toxicities | 204 | 14.0 |
| Toxicities | 103 | 11.9 | Offering social support | 174 | 11.9 |
| Treatment day motif | 65 | 7.5 | Treatment chronology | 135 | 9.2 |
| Family | 59 | 6.8 | Treatment day motif | 122 | 8.3 |
| Seeking social support | 42 | 4.9 | Family | 71 | 4.9 |
| Sharing information | 37 | 4.3 | Treatment question | 59 | 4.0 |
| CNS disease | 32 | 3.7 | CNS disease | 49 | 3.4 |
| Chemotherapy comparison | 31 | 3.6 | Chemotherapy comparison | 38 | 2.6 |
| Media | 31 | 3.6 | Head/neck disease | 35 | 2.4 |
| Head/neck disease | 29 | 3.4 | Social, economic, political | 27 | 1.8 |
| Social, economic, political | 25 | 2.9 | GI disease | 18 | 1.2 |
| Lung disease | 19 | 2.2 | GU disease | 15 | 1.0 |
| GU disease | 18 | 2.1 | Breast disease | 14 | 1.0 |
| Breast disease | 16 | 1.9 | CyberKnife | 14 | 1.0 |
| Proton therapy | 14 | 1.6 | Humor | 14 | 1.0 |
| Hematologic disease | 13 | 1.5 | Proton therapy | 14 | 1.0 |
| Gynecologic disease | 11 | 1.3 | Lung disease | 13 | 0.9 |
| Gastrointestinal disease | 10 | 1.2 | GammaKnife | 11 | 0.8 |
| Post-treatment | 10 | 1.2 | Hematologic disease | 11 | 0.8 |
| CyberKnife | 9 | 1.0 | SBRT | 10 | 0.7 |
| Whole brain radiation | 8 | 0.9 | Whole brain radiation | 10 | 0.7 |
| Brachytherapy | 7 | 0.8 | IMRT | 9 | 0.6 |
| Humor | 7 | 0.8 | Media | 9 | 0.6 |
| GammaKnife | 5 | 0.6 | Miscellaneous organ | 7 | 0.5 |
| SBRT | 4 | 0.5 | Brachytherapy | 4 | 0.3 |
| Miscellaneous organ | 3 | 0.3 | Gynecologic disease | 4 | 0.3 |
| Skin disease | 3 | 0.3 | Post-treatment | 4 | 0.3 |
| EBRT | 2 | 0.2 | Skin disease | 4 | 0.3 |
| IMRT | 2 | 0.2 | Bone marrow transplant | 3 | 0.2 |
| Miscellaneous modality | 2 | 0.2 | EBRT | 2 | 0.1 |
| Bone marrow transplant | 1 | 0.1 | IGRT | 1 | 0.1 |
Abbreviations: CNS = central nervous system; EBRT = external beam radiation therapy; GI = gastrointestinal; GU = genitourinary; IMRT = intensity modulated radiation therapy; SBRT = stereotactic body radiation therapy.
Self-identified health care professionals and example comments
| Health care professional | Frequency | Example of highest-voted comment |
|---|---|---|
| Radiation therapist | 9 | “Radiotherapy treatments with cyberknife are one of the most precise treatments nowadays, the main goal is to irradiate small volumes whie sparring the healthy tissue so the toxicity of the treatment is quite low…” |
| Physician-radiation oncology | 7 | “Many of these things are possible and do sound scary, but the chances of them happening/dramatically interfering with life is not very high. Some of them are not possible. For example, you cannot get inflammatory bowel disease or Celiac's disease from radiation; some of the symptoms may be similar between possible (not guaranteed or likely) radiation effects and IBD or celiac's…” |
| Medical physicist | 2 | “I am a trained radiotherapy medical physicist… Stereotactic radiosurgery (the technique Gamma Knife uses) does not remove the tumors from the brain, it simply slows down, stops, or reverses the growth of the tumors. It is very highly focused, so damage is only done to the tumors, not the surrounding normal tissue…” |
| Caregiver | 1 | “…We have a cookbook “Eating Well Through Cancer.” My wife initially dropped 37 pound due to chemo destroying her appetite and GI tract. After bottoming out below 90 pounds she's gained back 10, mostly by making sure she is getting protein and calories…” |
| Clinical epidemiologist | 1 | “Hi, with 5-year survival rates around 96% for these types of cancers, either surgery alone or radiation alone are the std treatment choices, with RT showing equivalent survival but fewer complications and adverse effects. No benefit would come with cyberknife or IMRT for these patients, so I think your uncle is getting the most resonable option…” |
| Genetic counselor | 1 | “The RAD50 genes are very new with little understood about them. Nccn has not even made any recommendations about what to do in patients with it. Your radiologist should have never ordered testing without pretest counseling but that's done now…” |
| Nurse | 1 | “Medicare covers the therapy. I would think, depending on the plan, the out Of pocket would be a percentage plus cost of commute and Meds. It's hard to get a number as facilities bill at different rates at different areas…” |
| Pharmacist | 1 | “I had a patient with vestibular Schwannoma who got radiation therapy for it. I think vestibular Schwannoma, which essentially never metastasizes, isn't malignant but I know this is controversial…” |
| Physician-bone marrow transplant | 1 | “Consolidation chemotherapy has not been shown to improve outcomes in non-resectable stage IIIA NSCLC treated with concurrent chemoradiation…” |
| Physician-hematology/oncology | 1 | “[Proton therapy] isn't proven to be any better, and often isn't even proven to be as good for almost all cancers. I would recommend it for childhood brain tumors or other cancers near the brain or spinal cord, but that's about it…” |
| Physician-neurosurgery | 1 | “Are they certain of the diagnosis? A lot of this doesn't make perfect sense. A 52yo person with a new glioma is almost never a grade 2, radiation necrosis almost never happens in a month, and even excellent neuroradiologists have great difficulty separating radiation necrosis from recurrent high-grade tumor on imaging alone…” |
| Physician-pathology | 1 | “That's a bad situation. From how you describe it, I wonder if no one saw how delirious she is. Imaging can usually suggest recurrence or residual tumor growth, and sometimes a biopsy is only done to confirm suspicions…” |
| Physician-radiation oncology/palliative care | 1 | “Brachyherapy is a very effective treatment for some categories of prostate cancer. Prostate cancer can usually be followed very well with the PSA blood test after this procedure. It can take a couple of years though for the PSA to reach its lowest levels after brachy, and then it is monitored for many years after that to determine if it is staying down…” |
| Radiation therapy student | 1 | “Im a rt student and we have a cyber knife in pur department. I might be able tp answer a few questions:)” |
Distribution of posts referencing specific radiation therapy modalities
| Modality | Frequency | Percent |
|---|---|---|
| Proton therapy | 14 | 7.4 |
| CyberKnife | 10 | 5.3 |
| Brachytherapy | 8 | 4.2 |
| Whole brain radiation | 8 | 4.2 |
| GammaKnife | 5 | 2.6 |
| Stereotactic body radiation therapy | 4 | 2.1 |
| External beam radiation therapy | 2 | 1.1 |
| Linear accelerator | 2 | 1.1 |
| Bone marrow transplant radiation | 1 | 0.5 |
| Cobalt-60 | 1 | 0.5 |
| Intensity modulated radiation therapy | 1 | 0.5 |
| Tomotherapy | 1 | 0.5 |