what to write to someone young who has cancer reddit
Adv Radiat Oncol. 2019 Apr-Jun; iv(2): 345–353.
Reddit and Radiation Therapy: A Descriptive Analysis of Posts and Comments Over seven Years by Patients and Wellness Care Professionals
Joel Thomas
aUniversity of Pittsburgh Schoolhouse of Medicine, Pittsburgh, Pennsylvania
Arpan V. Prabhu
bSection of Radiations Oncology, UAMS Winthrop P. Rockefeller Cancer Institute, Footling Rock, Arkansas
cDepartment of Radiation Oncology, Academy of Pittsburgh School of Medicine and UPMC Hillman Cancer Institute, Pittsburgh, Pennsylvania
Dwight E. Heron
cSection of Radiations Oncology, University of Pittsburgh School of Medicine and UPMC Hillman Cancer Institute, Pittsburgh, Pennsylvania
Sushil Beriwal
cDepartment of Radiation Oncology, Academy of Pittsburgh School of Medicine and UPMC Hillman Cancer Found, Pittsburgh, Pennsylvania
Received 2018 Dec 17; Accepted 2019 Jan 23.
Abstract
Purpose
Reddit is a social media platform that allows health care professionals (HPs) to anonymously interact with patients. Nosotros 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 writer consensus, which were used to narrate all posts and their top iii voted comments. Posts were analyzed for time to first answer, mention of whatever specific RT modality, whether a self-identified HP responded, and fourth dimension to offset highly voted comment past an HP.
Results
Exactly 190 posts about RT by 178 users were shared from February 2011 to May 2018, and 468 replies by 295 users were as well analyzed. Twenty-ix of these users (ix.8%) were HPs; however, 48 of 181 top comments were contributed by HPs compared with 45 of 288 non–top comments by HPs (odds ratio, 1.95; 95% confidence interval [CI], i.23-iii.08; P < .004). The most mutual themes were treatment questions, chronology, and data; toxicities; and social support. The median time to first comment after posting was 64.0 minutes (95% CI, 53.0-82.0), and median time to first highly voted comment from an HP was 264.0 minutes (95% CI, 153.5-427.9; U = 4123.5; P < .0001 2-tailed). Fifty-iii posts (27.9%) identified a specific RT modality, with proton therapy (7.four%), CyberKnife (5.3%), brachytherapy (4.ii%), and whole brain radiations (4.two%) beingness the nigh common.
Conclusions
HPs did not reply often to RT posts and generally took longer to practise then, but their replies were valued by users. Common themes included handling questions, chronology, and treatment; toxicities; and social support. Proton therapy received notable attention.
Introduction
Social media has attracted attention in public health research considering it can reveal attitudes and practices that are underrepresented in traditional surveys.one, ii, 3, four Moreover, online platforms allow wellness care professionals (HPs) to straight interact with patients, often in an bearding context to minimize fears nigh potentially compromising professional identity.v
Reddit.com is a give-and-take website that encourages conversation about a broad variety of topics on various subreddits.6 Users can create anonymous profiles and engage in individual subreddits (eg, reddit.com/r/cancer and reddit.com/r/food) by starting written threads and posting pictures and videos with discussion in comments. Different users and subreddits afford a diverseness of means of appointment. Individuals on reddit.com/r/cancer, for example, may ask questions to cocky-identified HPs about what to look with handling. Reddit is among the near pop social media websites, ranking fifth for net traffic in the United states, surpassing Twitter, Instagram, and Tumblr.7
Multiple simultaneous conversations may take place at one time in a given comments section for a mail service via comment copse, which allow users to annotate both on the postal service itself and comments within the mail. Therefore, a given post may have several contained conversations occurring simultaneously, represented every bit comment copse in response to a single original comment. New comment trees are distinguished from responses to an existing comment tree by the degree of indentation in the comment formatting. Subreddits may have users who actively post, subscribers who post or merely cull to scan content, and moderators who regulate the subreddits (eg, deleting threads that violate the individual subreddit'due south rules). Posts are archived and easily accessible, allowing researchers easy access to a substantial corpus of data. Prior studies take analyzed posts to identify patient sentiment nigh mental disease,eight, nine dermatologic disease,ten and gout.11
The cancer subreddit (reddit.com/r/cancer) is highly active with >21,000 subscribers. Its members include patients and their family members, as well as HPs and scientists. All the same, no studies have examined Reddit discussions nearly radiation therapy (RT). Given the recent American Society of Radiation Oncology (ASTRO) initiative for greater radiation oncology representation in social media,12 the field may benefit from understanding and engaging through this medium about RT'due south contribution to cancer intendance.
Herein, we present an analysis of Reddit give-and-take about RT past patients and HPs. We aimed to characterize discussions on the cancer subreddit about RT and to identify interactions betwixt patients and their families with HPs.
Methods and Materials
Data drove
Posts about radiation therapy and comments
Considering this analysis exclusively involved public online material, institutional board blessing was unnecessary. A single author (J.T.) manually collected all English-language posts virtually RT in the cancer subreddit (reddit.com/r/cancer) using Reddit'south public search feature. Exactly 20 search terms were queried: IMRT, 3D-CRT, SBRT, EBRT, XRT, radiation, radiotherapy, RT, radio, rad, rads, gamma, gamma knife, gammaknife, cyber knife, cyberknife, cyber, brachytherapy, brachy, and cobalt. These terms were believed to be exhaustive because search results for each term contained posts with conjunctions of the queried term. For example, searching "radiation" besides revealed posts that contained the term "radiation treatment." All collected posts were subsequently independently reviewed by a second writer (A.V.P.) for final inclusion in the database. Posts that did non appear to hash out RT were excluded.
The following information was collected for each post: fourth dimension and date submitted, number of comments, username of poster, whether a specific RT modality was mentioned (eg, SBRT), and whether a self-identified HP commented on the mail service. The first annotate for each post was also analyzed by sorting the mail service comments by "onetime" and identifying the first comment. For each post, the time of the first comment and username of the author of the first comment were besides nerveless. Deleted posts and comments were obtained using the removeddit awarding (https://github.com/JubbeArt/removeddit). Pushshift Reddit API was used to collect the full number of posts submitted to reddit.com/r/cancer.thirteen
The top 3 contained comments for each post were also collected. We chose to collect original independent comments to best capture the breadth of perspectives offered in response to individual posts. Thus, the top independent comments for each postal service were identified by sorting the comments past "top" and selecting the first 3 comments without whatsoever indentation to the right. For posts without at least three independent comments, we collected equally many independent comments as possible using the aforementioned approach. For all top comments, we collected the date and time of the comment, as well as the username of the author who wrote the comment. We further assessed whether a self-identified HP authored the comment.
Post and comment coding
We generated a random sample of 20 posts and their top comments using Google'south random number generator. Two authors (J.T. and A.V.P.) performed manual coding of these posts and comments to generate a preliminary list of 29 codes. Broad categories for codes included thematic content (eg, humor, comparison with chemotherapy, family members), organ organisation involved (eg,. lung, breast), and treatment modality (eg, SBRT). The rest of the posts and comments in the database were subsequently coded using this preliminary list, with boosted codes generated at the authors' discretion if thematic content could non be captured with the original list. An initial review of the posts and comments yielded 39 codes, which were later on condensed to 34 broader themes.
Upon completion of coding posts and comments in reddit.com/r/cancer, we queried our 21 search terms in other smaller cancer subreddits: r/radiationtherapy (180 subscribers), r/radiationoncology (192 subscribers), r/ovariancancer (138 subscribers), r/testicularcancer (647 subscribers), r/multiplemyeloma (414 subscribers), r/prostatecancer (517 subscribers), r/f*ckcancer (1500 subscribers), r/cancersurvivors (237 subscribers), r/lungcancer (202 subscribers), r/melanoma (443 subscribers), r/braincancer (1000 subscribers), r/leukemia (478 subscribers), r/lymphoma (624 subscribers), and r/pancreaticcancer (757 subscribers). However, we chose not to proceed with an exhaustive assay of these communities because they independent orders of magnitude fewer subscribers than r/cancer (twenty,600 subscribers), did non have as stiff an HP presence, and appeared to have like content upon review by authors.
Statistical analysis
The odds ratio for top annotate versus non–acme annotate by HP versus non-HP was calculated. The Isle of man-Whitney U examination was used to appraise differences in fourth dimension to kickoff annotate by anyone versus time to first high-quality comment by an HP. SPSS Statistics 24 (IBM Corp., Armonk, NY) and MedCalc Statistical Software, version 18.10.2 (MedCalc Software bvba, Ostend, Belgium) were used for all statistical analyses. The median number of codes and distribution of codes for posts and comments were assessed, as well as the most frequent codes per twelvemonth from 2013 to 2018. The years 2011 and 2012 were omitted in this temporal assay of codes because of an insufficient number of posts and comments in each year.
Nosotros besides assessed the median number of comments, the representation of self-identified HPs, median time to first comment, median time to showtime highly voted independent comment by an HP, and representation of posts mentioning a specific RT modality. We likewise analyzed the frequency with which the first comment on the postal service received the most votes.
Results
A total of 190 public posts nearly RT were posted past 178 unique users between Feb 2011 and May 2018. Virtually all posts returned using our search terms discussed RT and thus were included in our database. A total of 468 replies past 295 unique users were likewise analyzed. For comparing, approximately 41,000 total posts were shared in reddit.com/r/cancer. Thus, posts explicitly mentioning RT represent <0.5% of the full content on reddit.com/r/cancer. Table 1 describes the criteria used to classify posts and comments by codes and provides examples of content for each code.
Table 1
Descriptions of terminal codes
| Lawmaking | Description |
|---|---|
| Bone marrow transplant | Bone marrow transplant for malignancy |
| Brachytherapy | Brachytherapy for malignancy |
| Breast illness | Primary chest disease or side issue at breast |
| Chemotherapy comparing | Comparing/contrasting radiation to chemotherapy |
| CNS | Main CNS disease or side effects at CNS |
| Cyberknife | CyberKnife for malignancy |
| EBRT | EBRT not otherwise specified for malignancy |
| Family | Referring to family (eg, for back up 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 furnishings 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 affliction or caput and cervix side effects |
| Hematologic illness | Principal hematologic disease or hematologic side effects |
| Humor | Humorous content (eg, jokes, memes) |
| IGRT | IGRT for malignancy |
| IMRT | IMRT for malignancy |
| Lung affliction | Master 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 |
| Offer social back up | Explicitly responding to emotional needs |
| Mail service-treatment | Explicit reference to prior finished handling |
| 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 data | Content predominantly offered for factual description (vs∖emotional support) |
| Pare disease | Melanoma and nonmelanoma skin cancer primary disease or skin side effects |
| Treatment twenty-four hours 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, radiations therapy) |
| Treatment chronology | Description of history of nowadays illness |
| Handling question | Question almost treatment for factual clarification |
| Whole brain radiations | Whole brain radiation for malignancy |
Figures 1 and 2 represent the most mutual codes for posts and comments, respectively; the size of the text correlates with the frequency with which the code appeared. The median number of codes per postal service was four (interquartile range [IQR], four-5), and the median number of codes per annotate was 3 (IQR, two-four). Tabular array 2 reports the most mutual codes for posts and comments. The nigh mutual organ organisation represented in both posts and comments was central nervous organisation (CNS) disease. The most frequent themes in posts were specific questions related to handling, chronological accounts of the history of present affliction, and treatment toxicities. A total of 125 posts (65.7%) included "handling question," 117 (61.vi%) included "treatment chronology," and 100 (52.6%) included "toxicities." Exactly 44 posts (23.two%) included all 3 themes.
Tabular array two
Mail service and annotate lawmaking distribution
| Postal service code | Comment code | ||||
|---|---|---|---|---|---|
| Code | Frequency | Percent | Code | Frequency | Percentage |
| Treatment question | 126 | fourteen.6 | Sharing information | 357 | 24.4 |
| Treatment chronology | 118 | 13.7 | Toxicities | 204 | 14.0 |
| Toxicities | 103 | 11.9 | Offering social back up | 174 | 11.9 |
| Handling day motif | 65 | 7.5 | Treatment chronology | 135 | 9.2 |
| Family | 59 | half dozen.8 | Treatment day motif | 122 | viii.iii |
| Seeking social back up | 42 | 4.nine | Family | 71 | 4.9 |
| Sharing data | 37 | four.three | Treatment question | 59 | 4.0 |
| CNS disease | 32 | 3.7 | CNS affliction | 49 | 3.four |
| Chemotherapy comparison | 31 | 3.6 | Chemotherapy comparison | 38 | ii.6 |
| Media | 31 | 3.half dozen | Head/neck disease | 35 | 2.4 |
| Head/neck disease | 29 | iii.four | Social, economic, political | 27 | 1.eight |
| Social, economical, political | 25 | 2.9 | GI disease | 18 | 1.2 |
| Lung disease | 19 | two.2 | GU disease | 15 | ane.0 |
| GU disease | 18 | 2.ane | Breast disease | 14 | 1.0 |
| Breast disease | 16 | i.9 | CyberKnife | fourteen | 1.0 |
| Proton therapy | 14 | i.6 | Humor | 14 | ane.0 |
| Hematologic disease | 13 | ane.5 | Proton therapy | 14 | 1.0 |
| Gynecologic illness | 11 | ane.3 | Lung affliction | thirteen | 0.ix |
| Gastrointestinal disease | 10 | one.2 | GammaKnife | 11 | 0.viii |
| Post-treatment | 10 | 1.2 | Hematologic disease | 11 | 0.8 |
| CyberKnife | 9 | ane.0 | SBRT | 10 | 0.vii |
| Whole brain radiation | viii | 0.9 | Whole brain radiation | ten | 0.7 |
| Brachytherapy | 7 | 0.8 | IMRT | 9 | 0.half-dozen |
| Humor | 7 | 0.8 | Media | 9 | 0.6 |
| GammaKnife | five | 0.half-dozen | Miscellaneous organ | 7 | 0.5 |
| SBRT | 4 | 0.5 | Brachytherapy | 4 | 0.3 |
| Miscellaneous organ | three | 0.iii | Gynecologic disease | iv | 0.3 |
| Skin illness | 3 | 0.3 | Post-handling | iv | 0.three |
| EBRT | two | 0.2 | Skin disease | 4 | 0.3 |
| IMRT | ii | 0.ii | Bone marrow transplant | three | 0.2 |
| Miscellaneous modality | ii | 0.ii | EBRT | 2 | 0.1 |
| Bone marrow transplant | ane | 0.1 | IGRT | i | 0.i |
Tables E1 and E2 (bachelor online at https://doi.org/10.1016/j.adro.2019.01.007) report changes in code frequency by yr from 2013 to 2018 for posts and comments. We did not discover any noticeable differences in mail or comment theme distribution over time.
20-nine users (9.8%) were cocky-identified HPs, including 12 physicians (including 8 radiation oncologists) and 9 radiations therapists; however, HPs provided 26.five% of the highest voted comments and emerged in 42.5% of the top 3 comments. Exactly 48 of 181 top comments were contributed past HPs compared, with 45 of 288 not–tiptop comments past HPs (odds ratio, 1.95; 95% confidence interval [CI], 1.23-iii.08; P < .0043). In total, 111 posts (58.4%) received a response from an HP. Additionally, 53 posts (27.9%) identified a specific RT modality, with proton therapy (seven.4%), CyberKnife (5.iii%), brachytherapy (4.2%), and whole brain radiation (4.2%) existence the almost common. Table 3 reports the distribution of self-identified HPs, represented with examples of loftier-quality comments by HPs. Table 4 reports the distribution of references to specific RT modalities.
Tabular array 3
Self-identified wellness care professionals and example comments
| Health care professional | Frequency | Example of highest-voted annotate |
|---|---|---|
| Radiations therapist | 9 | "Radiotherapy treatments with cyberknife are i of the most precise treatments nowadays, the main goal is to irradiate small volumes whie sparring the healthy tissue and then the toxicity of the treatment is quite low…" |
| Medico-radiations oncology | 7 | "Many of these things are possible and exercise sound scary, just the chances of them happening/dramatically interfering with life is not very high. Some of them are not possible. For example, yous cannot get inflammatory bowel disease or Celiac's disease from radiations; some of the symptoms may be like betwixt possible (non guaranteed or likely) radiations effects and IBD or celiac'due south…" |
| Medical physicist | 2 | "I am a trained radiotherapy medical physicist… Stereotactic radiosurgery (the technique Gamma Pocketknife uses) does not remove the tumors from the brain, information technology simply slows downwardly, stops, or reverses the growth of the tumors. Information technology is very highly focused, so impairment is but done to the tumors, not the surrounding normal tissue…" |
| Caregiver | ane | "…We have a cookbook "Eating Well Through Cancer." My wife initially dropped 37 pound due to chemo destroying her appetite and GI tract. Subsequently bottoming out below xc pounds she'southward gained back 10, mostly by making sure she is getting protein and calories…" |
| Clinical epidemiologist | 1 | "Hi, with five-yr survival rates effectually 96% for these types of cancers, either surgery alone or radiation lone are the std treatment choices, with RT showing equivalent survival but fewer complications and adverse furnishings. No do good would come with cyberknife or IMRT for these patients, and so I think your uncle is getting the about resonable choice…" |
| Genetic counselor | ane | "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 merely that's done now…" |
| Nurse | one | "Medicare covers the therapy. I would think, depending on the plan, the out Of pocket would be a pct plus cost of commute and Meds. Information technology's hard to get a number as facilities bill at unlike rates at different areas…" |
| Pharmacist | 1 | "I had a patient with vestibular Schwannoma who got radiation therapy for it. I think vestibular Schwannoma, which substantially never metastasizes, isn't malignant but I know this is controversial…" |
| Physician-bone marrow transplant | ane | "Consolidation chemotherapy has not been shown to ameliorate outcomes in non-resectable stage IIIA NSCLC treated with concurrent chemoradiation…" |
| Doctor-hematology/oncology | i | "[Proton therapy] isn't proven to exist any better, and often isn't fifty-fifty proven to be as good for virtually all cancers. I would recommend it for childhood brain tumors or other cancers near the brain or spinal cord, merely that'south about information technology…" |
| Dr.-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 near never a grade two, radiations necrosis nearly never happens in a calendar month, and even excellent neuroradiologists take not bad difficulty separating radiations necrosis from recurrent high-grade tumor on imaging lone…" |
| Medico-pathology | 1 | "That's a bad situation. From how you depict it, I wonder if no 1 saw how delirious she is. Imaging can usually propose recurrence or residual tumor growth, and sometimes a biopsy is but done to confirm suspicions…" |
| Physician-radiations oncology/palliative intendance | ane | "Brachyherapy is a very effective treatment for some categories of prostate cancer. Prostate cancer tin can usually be followed very well with the PSA claret test later on this process. It tin can accept a couple of years though for the PSA to attain its lowest levels later on 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:)" |
Table 4
Distribution of posts referencing specific radiation therapy modalities
| Modality | Frequency | Percentage |
|---|---|---|
| Proton therapy | 14 | 7.four |
| CyberKnife | 10 | five.three |
| Brachytherapy | 8 | 4.2 |
| Whole brain radiation | 8 | 4.2 |
| GammaKnife | five | ii.vi |
| Stereotactic body radiation therapy | 4 | 2.1 |
| External axle radiation therapy | two | one.1 |
| Linear accelerator | 2 | 1.ane |
| Bone marrow transplant radiation | one | 0.v |
| Cobalt-60 | ane | 0.five |
| Intensity modulated radiation therapy | ane | 0.5 |
| Tomotherapy | 1 | 0.5 |
The median number of comments per post was nine.0 (IQR, 5.0-13.0). Among posts with comments (n = 181), the median time to the first annotate after posting was 64.0 minutes (95% CI, 53.0-82.0), and the median time to the commencement highly voted annotate from an HP was 264.0 minutes (95% CI, 153.5-427.9; U = 4123.5; P < .0001 ii-tailed). In 120 posts (66.three%), the first annotate on the post received the almost votes.
Give-and-take
Social media analysis is a useful complement to traditional epidemiologic studies because individuals tend to reveal unique attitudes and behaviors when not directly surveyed.xiv Online social networks are known to amend the quality of life for patients with cancer past providing communal back up and factual information about the affliction.15, sixteen, 17 An arable literature exists virtually cancer communities on Twitter,18, xix Facebook,xx and YouTube,21, 22 only research about cancer word on Reddit is lacking despite its significant share of Internet traffic.7 Therefore, we conducted a retrospective survey of posts and comments about RT on reddit.com/r/cancer. We observed that posts that straight reference RT comprised <0.5% of all posts on the subreddit, highlighting substantial opportunity for radiation oncologist interest in this medium.
Postal service content
The almost common postal service themes were questions related to handling, chronological accounts of the history of the present affliction, and treatment toxicities. Our estimation of these findings is that posters want to provide readers with as much detail every bit possible to facilitate well-informed responses to questions and concerns. This demonstrates several advantages that Reddit offers for patients with cancer over similarly pop social media platforms. Outset, a Reddit mail service allows for substantial detail with twoscore,000 characters23 compared with 280 on Twitter24 and 2200 on Instagram.25 Indeed, many users took advantage of this opportunity by providing multiple-paragraph oncologic histories, including histology, imaging, goals of care, and other aspects spanning several years. Additionally, because Reddit only requires a (potentially disposable) e-mail address to sign upwards,six it allows for significant anonymity, allowing patients to more hands share emotionally charged and potentially sensitive content. For instance, multiple users took the opportunity to write cathartic narratives virtually well-intentioned but frustrating individuals they encountered throughout their course of treatment.
Nosotros postulate that CNS illness emerged as the most common organ system mentioned considering symptoms related to CNS involvement (eg, seizures, personality changes, and impaired cognition) are highly distressing and probable to be noticed by patients as well as friends and family, prompting advice-seeking behavior on the Net. In contrast, symptoms that involve other organ systems, such as gastrointestinal upset, dyspnea, or fatigue, may be more than easily masked. Nosotros also observed that, although just 22.ane% of posts included explicit appeals for social support, 37.1% of comments offered social support to the affiche, highlighting an atmosphere of empathy and inclusion in the cancer subreddit.
A substantial number of posts and comments referenced family, either every bit a means of personal support or in the context of making a mail service on Reddit on behalf of a family member. This is consistent with Reddit'southward demographics and the epidemiology of cancer. In total, 64% of Reddit users are between the ages of 18 and 29 years, 29% between 30 and 49 years, half-dozen% between 50 and 64 years, and ane% 65+ years.26 Because older age is a significant take a chance factor for many cancers,27 it is unsurprising that Reddit users—who are more likely to be younger—are seeking communication on behalf of older friends and family unit, who are less probable to utilise the website.
Most posts did not explicitly reference whatever specific RT modality, but the unmarried most common one referenced was proton beam therapy (PBT). This was surprising given the relative infrequency of PBT use compared with other modalities referenced (eg, CyberKnife and brachytherapy). We postulate that this is due to several factors. First, PBT is a relatively underused modality, but its utilization has been recently increasing at a rapid pace.28 Additionally, existing literature has demonstrated ambitious, controversial online marketing practices for PBT.29 Notably, 5 posts (35.7%) that referenced proton therapy were links to news articles virtually proton therapy (eg, why proton beams are more accurate than x-rays in treating cancer) with 0 to two comments, whereas other modalities were overwhelmingly represented in full-length posts in the context of patient narratives.
Because these findings, nosotros point to previous work demonstrating that websites about PBT often contain directly-to-consumer advertising for disease sites not endorsed by international consensus guidelines, as well as appeals to emotions using unsubstantiated claims of improved disease control and fewer toxicities.30
Patient-provider interactions
We observed that, although HPs mostly take longer to respond to posts, the peak comments are more probable to exist written by HPs. We interpret this finding as HPs taking more time to write deliberate, researched answers based on patient history. This may be partially explained by the fact that many self-identified HPs are frequent posters on the subreddit and thus take a reputation to uphold. The community appears to value these responses because summit comments were significantly more likely to be written by HPs. It may also be possible that HPs commented on the posts without formally identifying as such (eg, out of boosted concerns for preserving anonymity). We hypothesize that such users likely contributed some of the highly voted, well-reasoned comments with cited sources, thus mayhap underestimating the effect sizes in our statistical analysis between HPs and non-HPs.
The aforementioned anonymity besides allows providers to directly interact with patients using a more informal persona without fear of compromising their professional identities, which is a feature eagerly used on other websites, such as Sermo and Pupil Doctor Network.five At the aforementioned time, providers by and large adopted a professional tone and provided patients with nuanced explanations of the natural histories of their diseases, equally well as cautious reassurance when appropriate (Table three; eg "You lot cannot go inflammatory bowel affliction or Celiac's illness from radiations"). However, when faced with ambivalence, HPs tend to err on the side of caution and used a low threshold of suspicion for the recommendation to see an HP in person. Providers as well posted disclaimers about the limitations of their online patient interactions in the absenteeism of a detailed clinical test. Nonetheless, although HPs explicitly endorsed that their online recommendations were no substitute for a formal, in-personal evaluation by a provider, patients should be aware that anonymity does not allow for accountability.
Our findings recapitulate previous work showing that HPs employ the Internet to straight engage with patients, rather than simply providing educational materials aimed at a broad, nonspecific audience.1 We observed a median time of approximately 4.5 hours to an HP response of high quality, every bit assessed by peer rating through the voting system. This gratuitous online reassurance about a concerning but ultimately benign symptom may provide meaning relief, only as mentioned, providers recommended a low threshold for seeing HPs in person.
Additionally, many patients accept the pick of calling their physicians' personal phones at a moment'south notice with questions and concerns,31 only patients are often reluctant to achieve out to their providers for concerns of "low perceived demand" for interpersonal reasons, such as guilt or inconvenience.32 These sentiments were echoed in our data (eg, "…since my case isn't very serious I try not to have upwards much of [my doctor's] time and sometimes only existence nervous I forget to enquire questions but rather but concur…").
Of notation, although Reddit allows patients to chop-chop obtain reassurance and guidance from self-identified HPs, there is no guarantee of expertise backside the response received. An in-person visit may exact a pregnant fiscal brunt on patients, but it generally provides a guarantee of being evaluated by a board-certified or board-eligible professional person, which is not seen on this social media platform, because in that location is no formal verification process for self-identified HPs. All the same, although there is a risk of misclassification of HPs, comments with factual inaccuracy or opportunities for alternative courses of action (eg, "trust your oncologist" vs "seek a second opinion") frequently received responses with cited sources and detailed reasoning.
Limitations
This study has several important limitations. Start, as mentioned, Reddit's demographics have several important differences compared with those of the general population, mainly with regard to age. Moreover, threescore% to 70% of Reddit users are men, and >lxxx% have completed some college pedagogy.25 Nevertheless, there are likewise significant variations betwixt Reddit'south average demographics and those of individual subreddits. We hypothesize, for example, that the cancer subreddit likely has a greater proportion of oncologists than the website equally a whole. Every bit such, Reddit may be less useful to patients with express pedagogy or computer literacy, and several of the cultural references in conversations may be missed because of intergenerational differences. We also express our analysis to reddit.com/cancer. Although this is the most popular subreddit to discuss cancer past orders of magnitude (at 20,600 subscribers), other subreddits such as r/radiationoncology (191 subscribers), r/breastcancer (ane,500 subscribers), and r/ISurvivedCancer (443 subscribers) incorporate additional posts about RT. Yet, when queried with the same search terms used for r/cancer, the content of returned posts was largely similar to that of r/cancer. Thus, we believe our sampling of reddit.com/r/cancer alone is representative of posts about RT among patients with cancer on Reddit.
Additionally, Reddit's voting system has previously been criticized for biasing the kickoff comment on posts such that submission time unduly affects the final number of votes received.33 Indeed, we observed that in 120 posts (66.three%), the first annotate on the mail received the well-nigh votes. Yet, near meridian comments we observed included detailed responses by HPs in response to specific concerns past patients and their families. We besides used manual coding per author consensus in this study, although existing work reports that this appears to outperform algorithmic methods for classifying thematic content in social media.34
Conclusions
Given these findings, nosotros believe that HPs, peculiarly those already engaged with social media, should consider adding Reddit to their repertoire for patient outreach. At the very to the lowest degree, we abet periodic monitoring of the website because only 9.8% of posters in our sample were cocky-identified HPs, and the anonymity the website affords comes at the cost of accountability. Current radiation oncologist involvement on reddit.com/r/cancer is small, but we believe that traffic will likely increase with the 2017 ASTRO social media initiative, highlighting significant opportunity in the here-and-now to engage with patients on this platform. Specific opportunities include radiation oncology professionals becoming verified or openly identifying themselves online and conducting Ask Me Anything, ASTRO, or ARRO hosting threads to provide evidence-based discussion in dedicated subreddits (r/cancer, r/medicalschool, r/breastcancer), and possibly even the use of an official organizational handle to post verified and peer-reviewed material on Reddit with which others could engage.
Footnotes
Sources of support: This work had no specific funding.
Conflicts of involvement: The authors have no conflicts of involvement to disembalm.
Supplementary cloth for this commodity can be found at https://doi.org/x.1016/j.adro.2019.01.007.
Supplementary data
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Articles from Advances in Radiation Oncology are provided hither courtesy of Elsevier
Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6460228/
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