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 (Preprint)

Masiero, Marianna; Filipponi, Chiara; Pizzoli, Silvia Francesca Maria; Munzone, Elisabetta; Guido, Luca; Guardamagna, Vittorio; Marceglia, Sara; Prandin, Roberto; Prenassi, Marco; Manzelli, Vania; Savino, Chiara; Conti, Costanza; Rizzi, Federica; Casalino, Alice; Candiani, Giulia; Memini, Francesca; Chiveri, Luca; Vitali, Andrea Luigi; Corbo, Massimo; Milani, Alessandra; Grasso, Roberto; Traversoni, Silvia; Fragale, Elisa; Didier, F.; Pravettoni, Gabriella

doi:10.2196/preprints.41216

Cited by 2 publications

References 41 publications

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

Filipponi¹,

Chichua²,

Masiero³

et al. 2023

JMIR Cancer

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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.

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

Filipponi¹,

Chichua²,

Masiero³

et al. 2023

JMIR Cancer

Self Cite

View full text Add to dashboard Cite

show abstract

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

Filipponi¹,

Chichua²,

Masiero³

et al. 2022

Preprint

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View full text Add to dashboard Cite

BACKGROUND Cancer pain represents a new challenge for cancer patients and their family members. Despite progression in pain management, pain is still underreported and undertreated as well as 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 The current 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 R studio v.2022.02.3. We analyzed 679 posts (161 from caregivers, 518 from patients) published over ten years on the ‘cancer’ subreddit to identify unmet needs and emotions related to cancer pain. Hierarchical clustering and emotions and sentiments analysis were conducted. Two user groups (caregivers and patients) were compared as well. RESULTS The language used by patients and caregivers for describing their experiences related to cancer pain and their expressed needs were different. Regarding patients, the large cluster labeled as unmet needs was composed of the following clusters: 1A) reported experiences – with the (a) relationship with doctors and (b) reflections on physical features – as sub-clusters; and 1B) changes observed over time – with (a) regret and (b) progress as sub-clusters. As for caregivers, the main clusters were: 1A) social support and 1B) reported experiences – with (a) psychosocial challenges and (b) grief – as sub-clusters. Moreover, the comparison between the two groups showed that they share a common cluster labeled uncertainty. Regarding emotions and sentiments analysis, patients significantly expressed a higher negative sentiment than caregivers (z=-2.14, p<.05). On the contrary, caregivers expressed with more frequency a positive sentiment compared to patients (z=-2.26, p<.05), with trust (z=-4.12, p<.001) and joy as the most prevalent positive emotions (z=-2.03, p<.05). CONCLUSIONS Our study emphasized different perceptions of cancer pain in patients and caregivers. We revealed different needs and emotional activations between the two groups. Even though they may share their concerns and emotions differently, they both need a safe place to express themselves. Moreover, our study highlights the importance of considering caregivers as part of medical care. Overall, this study increases knowledge about users' unmet needs and emotions, which may have important clinical implications in pain management.

show abstract

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 (Preprint)

Cited by 2 publications

References 41 publications

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

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

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

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