Background: Cancer pain represents a challenge for cancer patients and their family members. Despite progression in pain management, pain is still underreported and undertreated, and there is limited information on the related needs that patients and caregivers may have. Online platforms represent a fundamental tool for research to reveal the unmet needs of these users and their emotions outside the medical setting.
Objective: This study aimed to (1) reveal the unmet needs of both patients and caregivers and (2) detect the emotional activation associated with cancer pain by analyzing the textual patterns of both users.
Methods: A descriptive and quantitative analysis of qualitative data was performed in RStudio v.2022.02.3 (RStudio Team). We analyzed 679 posts (161 from caregivers and 518 from patients) published over 10 years on the "cancer" subreddit of Reddit to identify unmet needs and emotions related to cancer pain. Hierarchical clustering, and emotion and sentiment analysis were conducted.
Results: The language used for describing experiences related to cancer pain and expressed needs differed between patients and caregivers. For patients (agglomerative coefficient=0.72), the large cluster labeled unmet needs included the following clusters: (1A) reported experiences, with the subclusters (a) relationship with doctors/spouse and (b) reflections on physical features; and (1B) changes observed over time, with the subclusters (a) regret and (b) progress. For caregivers (agglomerative coefficient=0.80), the main clusters were as follows: (1A) social support and (1B) reported experiences, with the subclusters (a) psychosocial challenges and (b) grief. Moreover, comparison between the 2 groups (entanglement coefficient=0.28) showed that they shared a common cluster labeled uncertainty. Regarding emotion and sentiment analysis, patients expressed a significantly higher negative sentiment than caregivers (z=-2.14; P<.001). On the contrary, caregivers expressed a higher positive sentiment compared with patients (z=-2.26; P<.001), with trust (z=-4.12; P<.001) and joy (z=-2.03; P<.001) being the most prevalent positive emotions.
Conclusions: Our study emphasized different perceptions of cancer pain in patients and caregivers. We revealed different needs and emotional activations in the 2 groups. Moreover, our study findings highlight the importance of considering caregivers in medical care. Overall, this study increases knowledge about the unmet needs and emotions of patients and caregivers, which may have important clinical implications in pain management.
Background: Cancer is a major global health problem. Patient-reported outcome (PRO) systems have been developed to support the treatment of patients with cancer. Although clear evidence of the benefits of the routine use of electronic patient-reported outcomes (ePROs) exists, engaging physicians in using these systems has been challenging.
Objective: This study aims to identify and analyze what is currently known about health care professionals' (HCPs) perceived barriers and facilitators that exist and influence the use of ePRO systems for cancer care.
Methods: We carried out a systematic mapping study by conducting searches of 3 databases (Association for Computing Machinery, PubMed, and Scopus). Eligible papers were published between 2010 and 2021, and they described HCPs' perspectives on using ePROs. The data on the included papers were extracted, a thematic meta-synthesis was performed, and 7 themes were summarized into 3 categories.
Results: A total of 17 papers were included in the study. The HCPs' perceived barriers and facilitators of using ePROs can be summarized into 7 themes: clinical workflow, organization and infrastructure, value to patients, value to HCPs, digital health literacy, usability, and data visualization and perceived features. These themes can be further summarized into 3 categories: work environment, value to users, and suggested features. According to the study, ePROs should be interoperable with hospital electronic health records and adapted to the hospital workflow. HCPs should get appropriate support for their use. Additional features are needed for ePROs, and special attention should be paid to data visualization. Patients should have the option to use web-based ePROs at home and complete it at the time most valuable to the treatment. Patients' ePRO notes need attention during clinical visits, but ePRO use should not limit patient-clinician face-to-face communication.
Conclusions: The study revealed that several aspects need improvement in ePROs and their operating environments. By improving these aspects, HCPs' experience with ePROs will enhance, and thus, there will be more facilitating factors for HCPs to use ePROs than those available today. More national and international knowledge about using ePROs is still needed to cover the need for information to develop them and their operating environments to meet the needs of HCPs.
Background: The recent onset of the COVID-19 pandemic and the social distancing requirement have created an increased demand for virtual support programs. Advances in artificial intelligence (AI) may offer novel solutions to management challenges such as the lack of emotional connections within virtual group interventions. Using typed text from online support groups, AI can help identify the potential risk of mental health concerns, alert group facilitator(s), and automatically recommend tailored resources while monitoring patient outcomes.
Objective: The aim of this mixed methods, single-arm study was to evaluate the feasibility, acceptability, validity, and reliability of an AI-based co-facilitator (AICF) among CancerChatCanada therapists and participants to monitor online support group participants' distress through a real-time analysis of texts posted during the support group sessions. Specifically, AICF (1) generated participant profiles with discussion topic summaries and emotion trajectories for each session, (2) identified participant(s) at risk for increased emotional distress and alerted the therapist for follow-up, and (3) automatically suggested tailored recommendations based on participant needs. Online support group participants consisted of patients with various types of cancer, and the therapists were clinically trained social workers.
Methods: Our study reports on the mixed methods evaluation of AICF, including therapists' opinions as well as quantitative measures. AICF's ability to detect distress was evaluated by the patient's real-time emoji check-in, the Linguistic Inquiry and Word Count software, and the Impact of Event Scale-Revised.
Results: Although quantitative results showed only some validity of AICF's ability in detecting distress, the qualitative results showed that AICF was able to detect real-time issues that are amenable to treatment, thus allowing therapists to be more proactive in supporting every group member on an individual basis. However, therapists are concerned about the ethical liability of AICF's distress detection function.
Conclusions: Future works will look into wearable sensors and facial cues by using videoconferencing to overcome the barriers associated with text-based online support groups.
International registered report identifier (irrid): RR2-10.2196/21453.
Background: The COVID-19 pandemic has led to a decrease in cancer screening due to the redeployment of health care resources and public avoidance of health care facilities. Breast cancer is the most common cancer diagnosed in female individuals, with improved survival rates from early detection. An avoidance of screening, resulting in late detection, greatly affects survival and increases health care resource burden and costs.
Objective: This study aimed to evaluate if a sustained decrease in public interest in screening occurred and to evaluate other search terms, and hence interest, associated with that.
Methods: This study used Google Trends to analyze public interest in breast cancer screening and symptoms. We queried search data for 4 keyword terms ("mammogram," "breast pain," "breast lump," and "nipple discharge") from January 1, 2019, to January 1, 2022. The relative search frequency metric was used to assess interest in these terms, and related queries were retrieved for each keyword to evaluate trends in search patterns.
Results: Despite an initial drastic drop in interest in mammography from March to April 2020, this quickly recovered by July 2020. After this period, alongside the recovery of interest in screening, there was a rapid increase in interest for arranging for mammography. Relative search frequencies of perceived breast cancer-related symptoms such as breast lump, nipple discharge, and breast pain remained stable. There was increase public interest in natural and alternative therapy of breast lumps despite the recovery of interest in mammography and breast biopsy. There was a significant correlation between search activity and Breast Cancer Awareness Month in October.
Conclusions: Online search interest in breast cancer screening experienced a sharp decline at the beginning of the COVID-19 pandemic, with a subsequent return to baseline interest in arranging for mammography followed this short period of decreased interest.
Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient's spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment.
Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers.
Methods: Focus groups were conducted with 15 informal caregivers and 13 health care professionals. Both informal caregivers and health care professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data.
Results: We investigated informal caregivers' needs, critical factors for adoption, and desired functionalities of Carer eSupport. A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches.
Conclusions: This study provided an in-depth understanding of informal caregivers' contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers' well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful eHealth interventions with a clear focus on users' well-being and positive emotions, especially for informal caregivers of patients with HNC.
International registered report identifier (irrid): RR2-10.1136/bmjopen-2021-057442.
Background: Physical activity (PA) is now considered an adjuvant therapy in cancer treatment; nevertheless, multiple barriers could reduce PA engagement during treatment. Active video games (AVGs) lead to the achievement of mild- to moderate-intensity PA and represent a promising tool for regular movement and exercise.
Objective: This paper aims to review the current literature and provide updated content on the physiological and psychological effects of AVG-based interventions in patients with cancer undergoing treatment.
Methods: Four electronic databases were investigated. Studies reporting on AVG interventions delivered to patients undergoing treatment were included. A total of 21 articles (17 interventions) were identified for data extraction and quality assessment.
Results: A total of 362 patients with cancer participated in the studies (number of participants 3-70). The majority underwent treatment for breast, lung, prostate, hematologic, or oral or laryngeal cancer. The types and stages of cancer varied in all studies. Participants ranged in age from 3 to 93 years. Four studies included patients with pediatric cancer. The duration of interventions ranged from 2 to 16 weeks, with a minimum of 2 sessions per week and a maximum of 1 daily session. Sessions were supervised in 10 studies, and 7 included home-based interventions. AVG interventions improved endurance, quality of life, cancer-related fatigue, and self-efficacy. Effects were mixed on strength, physical function, and depression. AVGs did not affect activity level, body composition, or anxiety. Compared with standard physiotherapy, physiological effects were lower or similar, and psychological effects were higher or similar.
Conclusions: Overall, our results suggest that AVGs can be recommended to patients undergoing cancer treatment, given the physiological and psychological benefits. When AVGs are proposed, supervision of the sessions should be considered as it can limit dropouts. In the future, it is important to develop AVGs that combine endurance and muscle strengthening, with the possibility of achieving moderate to high exercise intensity, depending on the physical abilities of the patients, as indicated in the World Health Organization's recommendations.