Well-being and Perceptions of Supportive Resources among Caregivers of Patients with Bladder Cancer

Jung, Ahrang; Song, Lixin; Snyder, Elizabeth; Louwers, Renata; Sachse, Karen; Chisolm, Stephanie; Gore, John L.; Smith, Angela

doi:10.3233/blc-200412

Cited by 3 publications

(1 citation statement)

References 27 publications

(32 reference statements)

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“…To better meet ostomates’ needs during this transitional time, our multidisciplinary team developed the Patient Reported Outcomes-Informed Symptom Management System (PRISMS), which is an eHealth symptom and complication monitoring and self-management program for cancer patients with new ostomies and their caregivers. We analyzed data extracted from the social media platform Reddit; qualitative interviews with Wound, Ostomy, and Continence care Nurses (WOCN) and other clinicians for cancer patients with ostomies [ 16 ]; and a caregiver survey [ 17 ]. We rigorously tested the usability of a PRISMS prototype through focus groups and interviews among stakeholders, including cancer patients with newly created ostomies ( n = 6), their caregivers ( n = 3), and clinicians ( n = 8).…”

Section: Introductionmentioning

confidence: 99%

An eHealth symptom and complication management program for cancer patients with newly created ostomies and their caregivers (Alliance): a pilot feasibility randomized trial

Xu,

Tan,

et al. 2023

BMC Cancer

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Background Cancer patients with newly created ostomies face complications that reduce quality of life (QOL) and increase morbidity and mortality. This proof-of-concept study examined the feasibility, usability, acceptability, and initial efficacy of an eHealth program titled the “Patient Reported Outcomes-Informed Symptom Management System” (PRISMS) during post-ostomy creation care transition. Methods We conducted a 2-arm pilot randomized controlled trial among 23 patients who received surgical treatment with curative intent for bladder and colorectal cancer and their caregivers. After assessing QOL, general symptoms, and caregiver burden at baseline, participants were randomly assigned to PRISMS (n = 16 dyads) or usual care (UC) (n = 7 dyads). After a 60-day intervention period, participants completed a follow-up survey and post-exit interview. We used descriptive statistics and t-tests to analyze the data. Results We achieved an 86.21% recruitment rate and a 73.91% retention rate. Among the PRISMS participants who used the system and biometric devices (n = 14, 87.50%), 46.43% used the devices for ≥ 50 days during the study period. Participants reported PRISMS as useful and acceptable. Compared to their UC counterparts, PRISMS patient social well-being scores decreased over time and had an increased trend of physical and emotional well-being; PRISMS caregivers experienced a greater decrease in caregiver burden. Conclusions PRISMS recruitment and retention rates were comparable to existing family-based intervention studies. PRISMS is a useful and acceptable multilevel intervention with the potential to improve the health outcomes of cancer patients needing ostomy care and their caregivers during post-surgery care transition. A sufficiently powered RCT is needed to test its effects. Trial registration ClinicalTrial.gov ID: NCT04492007. Registration date: 30/07/2020.

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Section: Introductionmentioning

confidence: 99%

An eHealth symptom and complication management program for cancer patients with newly created ostomies and their caregivers (Alliance): a pilot feasibility randomized trial

Xu,

Tan,

et al. 2023

BMC Cancer

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Perceived unmet needs and impact on quality of life of patients living with advanced bladder cancer and their caregivers: results of a social media listening study conducted in five European countries

Schuck,

Loussikian,

Mebarki

et al. 2024

BMC Cancer

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Background Advanced bladder cancer (aBC) is a significant health concern in Europe and has a poor prognosis. Patients with aBC face numerous unmet needs and challenges that significantly impact their quality of life (QoL). This study aims to analyze social media data from five European countries to address gaps in our understanding of the unmet needs, challenges, and impact on QoL in European patients with aBC and their caregivers. Methods This retrospective, real-world study includes public social media posts geolocated in France, Italy, Germany, Spain, and the UK, posted between October 2017 and January 2022. To enhance the filtering process, natural language processing methods and specific algorithms were used to remove irrelevant content and retain posts from patients and caregivers. QoL impacts were identified using a deep-learning algorithm, followed by qualitative analysis. Unmet needs were analyzed via annotation of messages and the saturation method. Results A total of 1670 posts from 1396 users (699 posts from 546 patients and 971 posts from 850 caregivers) discussing aBC in 91 publicly available online sources were identified. Half of patients were male (n = 272, 49.8%) while more caregivers were female (n = 474, 55.8%), with an average age of 58.2 and 35.2 years, respectively. Patients and caregivers expressed an impact on QoL, wherein 40.0% (558/1396) of users mentioned at least an impact on one aspect of QoL. Among those, 56.8% (317/558) and 48.6% (271/558) of users expressed physical and psychological challenges, respectively. Most unmet needs identified belonged to two main categories: transversal, i.e., arising throughout the patient’s care pathway (307/1092 [28.1%]), and disease specific (295/1092 [27.0%]). Main challenges included worsening of the disease (n = 141, 12.9%), psychological impact (n = 112, 10.3%), and need to share experiences and seek support (n = 94, 8.6%). Conclusions This social media listening study demonstrated the profound emotional and physical burden on patients with aBC and their caregivers, and a genuine need for support and an outlet to discuss their challenges, particularly in terms of managing the illness. These results underscore the importance of enhancing education for both patients and caregivers and the necessity for more effective systemic cancer therapies and better palliative care alternatives.

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Impact of Digital Interventions on the Treatment Burden of Patients with Chronic Conditions: A Systematic Review (Preprint)

Polus,

Keikhosrokiani,

Korhonen

et al. 2024

Preprint

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BACKGROUND Digital interventions can provide cost-effective, quality healthcare for patients with chronic conditions. Patients with chronic conditions often are burdened by a substantial load of adhering to treatment regimen and suffer from impacts on their function and well-being. This treatment burden has consequences for treatment adherence and disease outcomes. Digital interventions have the potential to alleviate the burden, but they also may cause additional burden to the patient. OBJECTIVE This systematic review aims to identify, summarize and synthesize the evidence of how digital interventions impact the treatment burden of people with chronic conditions. METHODS We searched databases PubMed, Scopus, Web of Science, ACM, PubMed Central and CINAHL for articles published between January 1, 2013, and October 16, 2023. Two reviewers independently screened the articles in two stages, extracted data from included articles, and assessed their quality using The Critical Appraisal tools from Joanna Briggs Institute. Convergent integrated approach was used for data synthesis and integration. RESULTS We included 39 relevant studies in total. We categorized the interventions into four types: Telehealth, Informational resources, Self-management tools, and Facilitated tools. The results of this study indicate that digital interventions mostly support patients with chronic conditions with their treatment burden, with minor concerns of increasing treatment burden. Patients with lower initial treatment burden who used self-management tools were the only group reporting more negative than positive impacts. The main benefits are support with self-management, informational support, and easier ways to contact healthcare professionals (HCPs). The main concerns were accessibility issues, time-consuming tools, and causing fear and anxiety. CONCLUSIONS Our findings demonstrate how treatment burden is a relevant concept for future digital healthcare research and practice. Digital interventions can help patients with their treatment burden by supporting self-management, improving access to healthcare, improving patient’s experience, and addressing relevant concerns. More research is needed about conditions with low or medium initial treatment burden. INTERNATIONAL REGISTERED REPORT RR2-10.2196/54833

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Well-being and Perceptions of Supportive Resources among Caregivers of Patients with Bladder Cancer

Cited by 3 publications

References 27 publications

An eHealth symptom and complication management program for cancer patients with newly created ostomies and their caregivers (Alliance): a pilot feasibility randomized trial

An eHealth symptom and complication management program for cancer patients with newly created ostomies and their caregivers (Alliance): a pilot feasibility randomized trial

Perceived unmet needs and impact on quality of life of patients living with advanced bladder cancer and their caregivers: results of a social media listening study conducted in five European countries

Impact of Digital Interventions on the Treatment Burden of Patients with Chronic Conditions: A Systematic Review (Preprint)

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