The voices of breast cancer survivors with chronic pain: A qualitative thematic analysis of patients' challenges to pain management.

OBJECTIVES: Recognizing the limitations of the current pain therapies, the study aimed to explore the unique needs and obstacles related to pain management in Breast Cancer Survivors (BCs) with Chronic Pain (CP). METHODS: 4 focus groups were conducted involving 17 BCs with CP (Mage = 51, SD = 7.99) with varying pain intensities. Thematic analysis was applied to transcribed discussions. FINDINGS: Three key themes emerged: (1) Challenges to pain management, including "Doctor-patients communications barriers" and "Contextual and societal barriers"; (2) Self-management needs, encompassing "Psycho-social support," "Care-related needs," and "Shared decision-making"; (3) Treatment preferences and perceptions of pain management, with subthemes like "Treatment preferences," "Institution preference," and "Decision role perception." CONCLUSIONS: This study emphasizes tailored support systems targeting patient hesitancy, countering pain normalization, and addressing healthcare providers' attitudes. It underscores the importance of integrating caregiver and peer support. Findings advocate refining healthcare provider education, adopting a comprehensive multidisciplinary approach, and strategically incorporating eHealth tools into such care.

Support for Chronic Pain Management for Breast Cancer Survivors Through Novel Digital Health Ecosystems: Pilot Usability Study of the PainRELife Mobile App.

BACKGROUND: Chronic pain is one of the most common and critical long-term effects of breast cancer. Digital health technologies enhance the management of chronic pain by monitoring physical and psychological health status and supporting pain self-management and patient treatment decisions throughout the clinical pathway. OBJECTIVE: This pilot study aims to evaluate patients' experiences, including usability, with a novel digital integrated health ecosystem for chronic pain named PainRELife. The sample included patients with breast cancer during survivorship. The PainRELife ecosystem comprises a cloud technology platform interconnected with electronic health records and patients' devices to gather integrated health care data. METHODS: We enrolled 25 patients with breast cancer (mean age 47.12 years) experiencing pain. They were instructed to use the PainRELife mobile app for 3 months consecutively. The Mobile Application Rating Scale (MARS) was used to evaluate usability. Furthermore, pain self-efficacy and participation in treatment decisions were evaluated. The study received ethical approval (R1597/21-IEO 1701) from the Ethical Committee of the European Institute of Oncology. RESULTS: The MARS subscale scores were medium to high (range: 3.31-4.18), and the total app quality score was 3.90. Patients with breast cancer reported reduced pain intensity at 3 months, from a mean of 5 at T0 to a mean of 3.72 at T2 (P=.04). The total number of times the app was accessed was positively correlated with pain intensity at 3 months (P=.03). The engagement (P=.03), information (P=.04), and subjective quality (P=.007) subscales were positively correlated with shared decision-making. Furthermore, participants with a lower pain self-efficacy at T2 (mean 40.83) used the mobile app more than participants with a higher pain self-efficacy (mean 48.46; P=.057). CONCLUSIONS: The data collected in this study highlight that digital health technologies, when developed using a patient-driven approach, might be valuable tools for increasing participation in clinical care by patients with breast cancer, permitting them to achieve a series of key clinical outcomes and improving quality of life. Digital integrated health ecosystems might be important tools for improving ongoing monitoring of physical status, psychological burden, and socioeconomic issues during the cancer survivorship trajectory. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/41216.

Cancer Pain Experience Through the Lens of Patients and Caregivers: Mixed Methods Social Media Study.

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.

Usability Testing of a New Digital Integrated Health Ecosystem (PainRELife) for the Clinical Management of Chronic Pain in Patients With Early Breast Cancer: Protocol for a Pilot Study.

BACKGROUND: Chronic pain (CP) and its management are critical issues in the care pathway of patients with breast cancer. Considering the complexity of CP experience in cancer, the international scientific community has advocated identifying cutting-edge approaches for CP management. Recent advances in the field of health technology enable the adoption of a novel approach to care management by developing integrated ecosystems and mobile health apps. OBJECTIVE: The primary end point of this pilot study is to evaluate patients' usability experience at 3 months of a new digital and integrated technological ecosystem, PainRELife, for CP in a sample of patients with breast cancer. The PainRELife ecosystem is composed of 3 main technological assets integrated into a single digital ecosystem: Fast Healthcare Interoperability Resources-based cloud platform (Nu platform) that enables care pathway definition and data collection; a big data infrastructure connected to the Fast Healthcare Interoperability Resources server that analyzes data and implements dynamic dashboards for aggregate data visualization; and an ecosystem of personalized applications for patient-reported outcomes collection, digital delivery of interventions and tailored information, and decision support of patients and caregivers (PainRELife app). METHODS: This is an observational, prospective pilot study. Twenty patients with early breast cancer and chronic pain will be enrolled at the European Institute of Oncology at the Division of Medical Senology and the Division of Pain Therapy and Palliative Care. Each patient will use the PainRELife mobile app for 3 months, during which data extracted from the questionnaires will be sent to the Nu Platform that health care professionals will manage. This pilot study is nested in a large-scale project named "PainRELife," which aims to develop a cloud technology platform to interoperate with institutional systems and patients' devices to collect integrated health care data. The study received approval from the Ethical Committee of the European Cancer Institute in December 2021 (number R1597/21-IEO 1701). RESULTS: The recruitment process started in May 2022 and ended in October 2022. CONCLUSIONS: The new integrated technological ecosystems might be considered an encouraging affordance to enhance a patient-centered approach to managing patients with cancer. This pilot study will inform about which features the health technological ecosystems should have to be used by cancer patients to manage CP. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/41216.

The emotional side of taking part in a cancer clinical trial.

BACKGROUND: Taking part in a cancer clinical trial often represents a source of psychological distress and emotional activation among patients and their caregivers. Nowadays, social media platforms provide a space for these groups to freely express and share their emotional experiences. AIMS: We aimed to reveal the most prevalent basic and complex emotions and sentiments in the posts of the patients and caregivers contemplating clinical trials on Reddit. Additionally, we aimed to categorize the types of users and posts. METHODS: With the use of keywords referring to clinical trials, we searched for public posts on the subreddit 'cancer'. R studio v. 4.1.2 (2021-11-01) and NRC Emotion Lexicon was used for analysis. Following the theoretical framework of Plutchik's wheel of emotions, the analysis included: 8 basic emotions (anger, fear, anticipation, trust, surprise, sadness, joy, and disgust) and 4 types of complex emotions (primary, secondary, tertiary, and opposite dyads). We utilized the package 'PyPlutchik' to visualize the emotion wheels in Python 3.10.5. RESULTS: A total of 241 posts were included in the final database. User types (129 patients, 112 caregivers) and post types (142 expressed shared experience, 77 expressed advice, and 85 conveyed both) were identified. Both positive (N = 2557, M = .68) and negative (N = 2154, M = .57) sentiments were high. The most prevalent basic emotions were: fear (N = 1702, M = .45), sadness (N = 1494, M = .40), trust (N = 1470, M = .44), and anticipation (N = 1376, M = .37). The prevalence of complex/dyadic emotions and their interpretation is further discussed. CONCLUSION: In this contribution, we identified and discussed prevalent emotions such as fear, sadness, optimism, hope, despair, and outrage that mirror the psychological state of users and affect the medical choices they make. The insights gained in our study contribute to the understanding of the barriers and reinforcers to participation in trials and can improve the ability of healthcare professionals to assist patients when confronted with this choice.

Eliciting empathetic drives to prosocial behavior during stressful events.

In the current pandemic situation, psychological science is increasingly considered by public health policy. Empathy is mainly recognized as a crucial drive for prosocial behavior. However, this rich body of evidence still lacks visibility and implementation. Effective social programs are needed, and little is known about how to elicit empathetic drives. The paper gives first a clear foundation to the role of empathy during stressful events. It provides then a comprehensive overview of innovative interventions triggering empathic response in the public such as fiction, film, and theater. Moreover, it integrates interactive ways of sharing personal views that could elicit empathetic feelings in different people. Advances deriving from this perspective could be of significant public interest in the current and future health crises and help authorities develop innovative social programs, which should be the focus of further scientific inquiry.

The Partial Mediator Role of Satisficing Decision-Making Style Between Trait Emotional Intelligence and Compassion Fatigue in Healthcare Professionals.

Background: Compassion fatigue (CF) represents a relevant issue for healthcare professionals. Currently, it is still unclear which psychological mechanism might lead to CF and which might protect workers from that. Decision-making styles, as well as emotional intelligence, might partially account for the presence of CF. Specifically, we hypothesized that a satisficing decision-making style would mediate the relationship between emotional intelligence and CF.Methods: A cross-sectional online survey was conducted on physicians and nurses from Italian Medical Departments. Three self-reported questionnaires were administered to collect data in accordance with our aims. A mediation model with Structural Equation Modeling on the relationship between trait emotional intelligence (TEI) and CF through the maximizing decision-making style was performed.Results: We found a significant relationship between TEI and CF (ß = -0.28, SE = 0.04, p < .001). The maximizing style partially mediated this relationship (ß = -0.04, SE = 0.01, p < .001). Moreover, negative relationships were found between sex (male), working hours, sleep quality, and CF. Conversely, a positive relationship between age and CF was demonstrated.Conclusions: Being emotionally intelligent resulted as a protective factor for developing CF, while the decision-making styles shaped the risk of developing CF.

A Comprehensive Analysis of the Cancer Chronic Pain Experience: A Narrative Review.

Cancer-related chronic pain (CP) represents a critical clinical issue through the disease, severely compromising the quality of life (QoL) of patients and the family environment. The current review employed a narrative method to synthesize the main results about the impact of cancer-related CP on QoL, adopting a multidimensional and threefold vision: patients, caregivers, and patient-caregiver perspective. Evidence emphasizes the importance of considering a bidirectional perspective (patient-caregiver) to understand better the pain experience throughout the cancer continuum and its consequences on QoL of patients and caregivers. Moreover, a holistic and multidimensional approach to cancer-related CP and its impact on QoL of patients and caregivers is still needed, in which the interconnection between physical, psychological, and social factors should be analyzed. Theoretical and methodological issues for orienting future social and family research initiatives were discussed.

Cancer diagnosis and suicide outcomes: Umbrella review and methodological considerations.

BACKGROUND: Suicide outcomes in cancer patients represent a major public health concern. We performed an umbrella review (UR) including all meta-analyses (MAs) and systematic reviews (SRs) published on the association between cancer and suicide outcomes. METHODS: Eligible studies were searched in the main scientific databases up to January 23rd, 2021. Eligible MAs/SRs focused on all suicide phenotypes among cancer patients. Evidence of the association was extracted; the credibility and quality of the included studies were evaluated using ad-hoc tools, including "A MeaSurement Tool to Assess systematic Reviews-2-Revised" (AMSTAR-2-R). RESULTS: Six MAs and 6 SRs were included. The standardized mortality ratio of suicide in cancer patients was 1.5 to 1.7-fold higher than in the general population. Risk factors for suicide outcomes among cancer patients were male sex and older age, a cancer diagnosis within the prior year, and some specific cancer sites. Among 107 associations, 90 (84.1%) were supported by high credibility of evidence (class II). However, all studies reported a large heterogeneity (I2> 50%) and the majority of them reported considerable heterogeneity (I2> 75%). All MAs used random-effects measures. All MAs but one assessed publication bias and only one disclosed it. The majority of MAs/SRs showed critically low quality based on AMSTAR-2-R. LIMITATIONS: We could not perform additional analyses due to the limited number of MAs. CONCLUSIONS: This UR underlines the inflated risk for suicide among cancer patients. Upcoming, well-designed studies are needed to account for a broader set of variables. Several methodological issues likewise warrant attention.

A longitudinal application of the Actor Partner Interdependence Model extended Mediations to the health effects of dyadic support.

Supportive communicative experiences within close relationships, such as dyadic support, have a protective effect on individuals' health and emotional well-being. However, little is known about how partners interact in determining their own and others' health or the mechanisms through which dyadic support influences physical health. We addressed those gaps by studying 1088 romantic couples from three consecutive years (T1, T2, T3; Swiss Household Panel). The study applied a data analysis strategy called Actor Partner Interdependence Model extended Mediation, which allows for mediation processes while considering the interdependence, or non-independence, of data coming from partners. Results showed that dyadic support was positively associated with perceived health over two years through the mediation of optimistic attitudes and depressive mood, both for person and partner effects. The present study demonstrates the interplay between the dyadic process and personality dispositions in maintaining good health.

A Breast Cancer Smartphone App to Navigate the Breast Cancer Journey: Mixed Methods Study.

BACKGROUND: Several mobile apps have been designed for patients with a diagnosis of cancer. Unfortunately, despite the promising potential and impressive spread, their effectiveness often remains unclear. Most mobile apps are developed without any medical professional involvement and quality evidence-based assessment. Furthermore, they are often implemented in clinical care before any research is performed to confirm usability, appreciation, and clinical benefits for patients. OBJECTIVE: We aimed to develop a new smartphone app (Centro di Senologia della Svizzera Italiana [CSSI]) specifically designed by breast care specialists and patients together to help breast cancer patients better understand and organize their journey through the diagnosis and treatment of cancer. We describe the development of the app and present assessments to evaluate its feasibility, usefulness, and capability to improve patient empowerment. METHODS: A mixed method study with brief longitudinal quantitative data collection and subsequent qualitative semistructured interviews was designed. Twenty breast cancer patients participated in the study (mean age 51 years, SD 10 years). The usability of the app, the user experience, and empowerment were measured after 1 month. The semistructured interviews measured the utility of the app and the necessary improvements. RESULTS: The app received good responses from the patients in terms of positive perception of the purpose of the app (7/20, 35%), organizing the cure path and being aware of the steps in cancer management (5/20, 25%), facilitating doctor-patient communication (4/20, 20%), and having detailed information about the resources offered by the hospital (2/20, 10%). Correlation and regression analyses showed that user experience increased the level of empowerment of patients (B=0.31, 95% CI 0.22-0.69; P=.009). The interviews suggested the need to constantly keep the app updated and to synchronize it with the hospital's electronic agenda, and carefully selecting the best time to offer the tool to final users was considered crucial. CONCLUSIONS: Despite the very small number of participants in this study, the findings demonstrate the potential of the app and support a fully powered trial to evaluate the empowering effect of the mobile health app. More data will be gathered with an improved version of the app in the second phase involving a larger study sample.

Effects of Self-Mastery on Adolescent and Parental Mental Health through the Mediation of Coping Ability Applying Dyadic Analysis.

Evidence demonstrated that self-mastery and coping ability predict mental health in adults and children. However, there is a lack of research analyzing the relationships between those constructs in parents and children. Self-report data from 89 dyads (adolescents' mean of age = 14.47, SD = 0.50; parents' mean of age = 47.24, SD = 4.54) who participated in waves 17, 18, and 19 (following T1, T2, and T3) of a nineteen-wave longitudinal study were analyzed using the Actor-Partner Interdependence Model's extended Mediation. Results showed significant actor effects of parents' and adolescents' self-mastery (T1) on mental health (T3) and the mediator effect of their coping abilities in managing stress (T2). Both a higher parental education level and being a mother positively influenced adolescents' coping ability. The mutually beneficial relationships between parents' and adolescents' self-mastery, coping ability, and mental health were not demonstrated. Self-mastery is a significant predictor of adolescents' and parents' mental health, and coping ability serves as a good mediator between them. Qualitative research may clarify reasons why partner effects in the model were found to be non-significant. Further research should re-test this model with a larger sample size during childhood, when parents provide significant behavioral models for their children-as well as in adolescence, considering the peer group-to develop guidelines for behavioral interventions.

Bullying and Substance Use in Early Adolescence: Investigating the Longitudinal and Reciprocal Effects Over 3 Years Using the Random Intercept Cross-Lagged Panel Model.

Bullying and substance use among adolescents have been increasingly studied in the field of developmental psychology, but research to date has primarily investigated the cross-sectional relationship and, to a lesser extent, the long-term impact of bullying on substance use. Grounded in the General Theory of Crime, this study focused on the longitudinal reciprocal relationships between bullying and substance use (i.e., smoking and alcohol consumption) during early to mid-adolescence, which is a critical developmental phase. We aimed to investigate the hypothesis of a reinforcing downward spiral at the within-person level. Moreover, we intended to examine gender differences in the expected longitudinal relationships. Our analyses are based on self-report data for bullying and substance use collected from 1,495 adolescents (746 males; M age at T 1 = 12.42, SD = 0.58) at three waves between 2017 and 2019. We applied the random intercept cross-lagged panel model to separate within-person from between-person effects. At the between-person level, the mutual association between bullying and substance use, previously demonstrated in cross-sectional studies, was confirmed. At the within-person level, results provide evidence of a significant age-dependent change in bullying and substance use from 13 to 14 years old, where the significant increase in bullying could be attributed to females but not to males. We also found a gender-independent significant positive effect of bullying at 12 years old on substance use at 13 years, but not vice versa. Thus, the hypothesis of a reinforcing downward spiral, shown by significant positive reciprocal effects, did not find support. According to the General Theory of Crime, our findings underline that bullying can be considered a context-related factor inasmuch as it pushes adolescents to smoke and drink, which are both expressions of low levels of self-control, which need to be considered in intervention programs to effectively prevent unhealthy and risky behaviors in adolescence.