Figure - available via license: Creative Commons Attribution-NonCommercial 4.0 International
Content may be subject to copyright.
Source publication
Objective
To characterize the users of the head and neck cancer (HNC) online support group (OSG) and describe the perceived benefits of membership.
Study Design
Cross‐sectional.
Setting
Online.
Methods
An administered survey with questions asking about demographics, cancer history, treatment choices, and feelings about OSGs was posted on the 5 l...
Context in source publication
Context 1
... subgroup of participants who read without active engagement have been referred to as "lurkers" in previous literature 26 ; our 20% lurker rate lies in the middle of the 15.6% to 32% rate reported across previous studies of other OSGs. 27 Our participants endorsed a high frequency of engagement, with 50.5% reporting using OSGs at least daily ( Table 3). Despite frequent use, the most selected time spent on OSGs per week was under 1 hour (44.1%) with most users spending fewer than 3 hours per week on OSGs (78.5%). ...Similar publications
b> Introduction: Metallic stents are widely used to prevent airway obstruction for tracheal stenosis caused by malignant diseases. Although their efficacy has been recognized, there is no established evidence surrounding their long-term safety. We report a case of airway stenosis caused by a metallic tracheal stent. Removal of the stent to secure t...
Citations
... In interviews following an unmoderated email-based support group intervention, participants reported being more active in terms of their treatment 97 . Four cross-sectional surveys report that group members learn about existing (50-60%) and alternative (60%) treatments; received treatment advice (20%); and can feel more confident in their chosen treatment 68,92,102,117,118 . Six cross-sectional quantitative studies (including one Delphi study) reported that 25-80.5% of participants reported learning about new treatments, having their treatment requests influenced by an online support group, or choosing to change their initial treatment after participating in an online group 43,45,91,92,119,120 . ...
This pre-registered systematic review aimed to examine whether online support groups affect the health and wellbeing of individuals with a chronic condition, and what mechanisms may influence such effects. In September 2024, literature searches were conducted across electronic databases (Medline, Embase, PsycInfo, Web of Science and Google Scholar), pre-publication websites (MedRxiv and PsyArXiv) and grey literature websites. Qualitative and quantitative studies were included if they explored the impact of online support groups on the health and wellbeing outcomes of individuals with a chronic condition. The Mixed Methods Appraisal Tool was used to appraise the quality of the included studies. In total 100 papers met the inclusion criteria with their findings presented in a thematic synthesis. Health and wellbeing outcomes were categorised as: physical health, mental health, quality of life, social wellbeing, behaviour and decision-making, and adjustment. Mechanisms reported in these studies related to exchanging support, sharing experiences, content expression, and social comparison. User and group characteristics were also explored. The included studies suggest that online support groups can have a positive impact on social wellbeing, behaviour, and adjustment, with inconclusive findings for physical health and quality of life. However, there is also the possibility of a negative effect on anxiety and distress, particularly when exposed to other group members’ difficult experiences. Research comparing different online group features, such as platforms, size, and duration is needed. In particular, future research should be experimental to overcome the limitations of some of the cross-sectional designs of the included studies. The review was funded by the National Institute for Health and Care Research Health Protection Research in Emergency Preparedness and Response. Pre-registration ID: CRD42023399258
... This trend not only underscores the critical role of the internet in modern healthcare communication but also brings to the forefront the pressing need for ensuring the accuracy and reliability of health-related content available online. This is particularly pertinent in the context of serious conditions such as head and neck cancer (2), where the quality of information can directly affect patient outcomes and treatment decisions. ...
Importance
Distress is common among patients with cancer, and evidence of disparities associated with distress has been mixed. Head and neck cancer (HNC) is one of the most emotionally distressing cancers and is also a highly disparate disease. However, it is unknown whether there are disparities associated with patient-reported distress in HNC.
Objective
To examine racial and sociodemographic factors associated with clinically meaningful distress in a cohort of patients with HNC.
Design, Setting, and Participants
This retrospective cohort study analyzed data from a single tertiary institution at a National Cancer Institute–designated comprehensive cancer center in the Southeastern US. Participants included adult patients from January 2017 to December 2022 with confirmed diagnoses of head and neck squamous cell carcinoma who received radiation therapy up to 5 weeks from initial diagnosis.
Main Outcomes and Measures
The outcome of interest was clinically meaningful distress (score of at least 4 on the distress thermometer). The distress thermometer is a single-item, self-reported tool used to measure a person's level of psychological distress over the past week, represented on a scale from 0 (no distress) to 10 (extreme distress). Patients were included in the study if they had visits with clinicians in the radiation oncology department within 5 weeks of diagnosis. Sociodemographic factors were race and ethnicity, age, sex, marital status, and health insurance status. Clinical variables (stage of presentation, anatomical subsites, smoking, and alcohol history) and problem list domain items were included in the adjusted model. Using multivariable logistic regression analysis, odds of meaningful distress by sociodemographic factors were estimated, adjusting for clinical factors and problem list domains.
Results
A total of 507 patients met the inclusion criteria. The study population included 389 male patients (76.7%). The median (IQR) age of participants was 63 (56-71) years, with a racial distribution of 89 Black patients (17.6%), 385 White patients (75.9%), and 33 patients of other categories (6.9%), including Asian, Native American, multiracial, declined to respond, and unknown. Overall, 232 patients (45.8%) had meaningful distress. The median (IQR) DT score for the entire cohort was 3 (0-6). Black patients had the highest rate of physical concerns (n = 31 [34.8%]) compared to the other racial groups (78 White patients [20.3%] and 7 persons of other race [21.2%]). However, in the final multivariable model, race was not significantly associated with clinically meaningful distress (Black compared with White: adjusted odds ratio [aOR], 0.76 [95% CI, 0.45-1.28]; other compared with White: aOR, 0.85 [95% CI, 0.37-1.94]). Compared to those married, unmarried patients were significantly more likely to report distress (aOR, 1.61 [95% CI, 1.05-2.50]). Also, patients with emotional problems had double the odds of reporting clinically meaningful distress (aOR, 2.03 [95% CI, 1.02-4.08]). Other factors associated with significant clinical distress included tobacco use (aOR, 2.14 [95% CI, 1.02-4.50]) and reported practical problems (aOR, 2.08 [95% CI, 1.17-3.69]).
Conclusion and Relevance
Independent of race or sociodemographic factors, the results of this retrospective cohort study underscore the need for social and emotional support in mitigating distress and optimizing mental health care in this patient population. Further studies should explore distress trajectories across the HNC continuum and their impact on HNC outcomes.
