| 1. |
- Ahmad, Awais, et al.
(författare)
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Positive Design Framework for Carer-eSupport : A Qualitative Study to Support Informal Caregivers of Patients with Head and Neck Cancer in Sweden
- 2023
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Ingår i: JMIR Cancer. - : JMIR Publications. - 2369-1999. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- 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 healthcare professionals. Both informal caregivers and healthcare 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 health interventions with a clear focus on users’ well-being and positive emotions, especially for informal caregivers of patients with HNC.
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| 2. |
- Hjärtström, Malin, et al.
(författare)
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Noninvasive Staging of Lymph Node Status in Breast Cancer Using Machine Learning : External Validation and Further Model Development
- 2023
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Ingår i: JMIR Cancer. - Toronto, ON : JMIR Publications. - 2369-1999. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Background: Most patients diagnosed with breast cancer present with a node-negative disease. Sentinel lymph node biopsy (SLNB) is routinely used for axillary staging, leaving patients with healthy axillary lymph nodes without therapeutic effects but at risk of morbidities from the intervention. Numerous studies have developed nodal status prediction models for noninvasive axillary staging using postoperative data or imaging features that are not part of the diagnostic workup. Lymphovascular invasion (LVI) is a top-ranked predictor of nodal metastasis; however, its preoperative assessment is challenging.Objective: This paper aimed to externally validate a multilayer perceptron (MLP) model for noninvasive lymph node staging (NILS) in a large population-based cohort (n=18,633) and develop a new MLP in the same cohort. Data were extracted from the Swedish National Quality Register for Breast Cancer (NKBC, 2014-2017), comprising only routinely and preoperatively available documented clinicopathological variables. A secondary aim was to develop and validate an LVI MLP for imputation of missing LVI status to increase the preoperative feasibility of the original NILS model. Methods: Three nonoverlapping cohorts were used for model development and validation. A total of 4 MLPs for nodal status and 1 LVI MLP were developed using 11 to 12 routinely available predictors. Three nodal status models were used to account for the different availabilities of LVI status in the cohorts and external validation in NKBC. The fourth nodal status model was developed for 80% (14,906/18,663) of NKBC cases and validated in the remaining 20% (3727/18,663). Three alternatives for imputation of LVI status were compared. The discriminatory capacity was evaluated using the validation area under the receiver operating characteristics curve (AUC) in 3 of the nodal status models. The clinical feasibility of the models was evaluated using calibration and decision curve analyses.Results: External validation of the original NILS model was performed in NKBC (AUC 0.699, 95% CI 0.690-0.708) with good calibration and the potential of sparing 16% of patients with node-negative disease from SLNB. The LVI model was externally validated (AUC 0.747, 95% CI 0.694-0.799) with good calibration but did not improve the discriminatory performance of the nodal status models. A new nodal status model was developed in NKBC without information on LVI (AUC 0.709, 95% CI: 0.688-0.729), with excellent calibration in the holdout internal validation cohort, resulting in the potential omission of 24% of patients from unnecessary SLNBs.Conclusions: The NILS model was externally validated in NKBC, where the imputation of LVI status did not improve the model's discriminatory performance. A new nodal status model demonstrated the feasibility of using register data comprising only the variables available in the preoperative setting for NILS using machine learning. Future steps include ongoing preoperative validation of the NILS model and extending the model with, for example, mammography images. © Malin Hjärtström, Looket Dihge, Pär-Ola Bendahl, Ida Skarping, Julia Ellbrant, Mattias Ohlsson, Lisa Rydén.
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| 3. |
- Langius-Eklöf, Ann, et al.
(författare)
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Adherence to Report and Patient Perception of an Interactive App for Managing Symptoms During Radiotherapy for Prostate Cancer : Descriptive Study of Logged and Interview Data.
- 2017
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Ingår i: JMIR Cancer. - : JMIR Publications Inc.. - 2369-1999. ; 3:2
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Patients undergoing radiotherapy for prostate cancer experience symptoms related to both the cancer itself and its treatment, and it is evident that patients with prostate cancer have unmet supportive care needs related to their disease. Over the past decade, there has been an increase in the amount of research within the field of mobile health and the use of apps as tools for managing illness. The main challenge is to develop a mobile technology to its full potential of being interactive in real time. The interactive app Interaktor, which aims to identify and manage symptoms in real time includes (1) a function for patients' assessment of the occurrence, frequency, and distress of symptoms; (2) a connection to a monitoring Web interface; (3) a risk assessment model that sends alerts via text message to health care providers; (4) continuous access to evidence-based self-care advice and links to relevant websites for more information; and (5) graphs for the patients and health care providers to view the history of symptom reporting.OBJECTIVE: The aim of the study was to investigate user behavior, adherence to reporting, and the patients' experiences of using Interaktor during radiotherapy for localized advanced prostate cancer.METHODS: The patients were instructed to report daily during the time of treatment and then for an additional 3 weeks. Logged data from patients' use of the app were analyzed with descriptive statistics. Interview data about experiences of using the app were analyzed with content analysis.RESULTS: A total of 66 patients participated in the study. Logged data showed that adherence to daily reporting of symptoms was high (87%). The patients used all the symptoms included in the app. Of the reports, 15.6% generated alerts to the health care providers. Overall, the patients found that it was easy and not particularly time-consuming to send a daily report, and many described it as becoming a routine. Reporting symptoms facilitated reflection on their symptoms and gave them a sense of security. Few technological problems were reported.CONCLUSIONS: The use of Interaktor increased patients' sense of security and their reflections on their own well-being and thereby served as a supportive tool for the self-management of symptoms during treatment of prostate cancer. Some further development of the app's content might be beneficial for future use.
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| 4. |
- Mendes Santos, Cristina, et al.
(författare)
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Development and Evaluation of the Usefulness, Usability, and Feasibility of iNNOV Breast Cancer : Mixed Methods Study
- 2022
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Ingår i: JMIR Cancer. - : JMIR Publications Inc. - 2369-1999. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Despite the efficacy of psychosocial interventions in minimizing psychosocial morbidity in breast cancer survivors (BCSs), intervention delivery across survivorship is limited by physical, organizational, and attitudinal barriers, which contribute to a mental health care treatment gap in cancer settings. Objective: The aim of this study is to develop iNNOV Breast Cancer (iNNOVBC), a guided, internet-delivered, individually tailored, acceptance and commitment therapy-influenced cognitive behavioral intervention program aiming to treat mild to moderate anxiety and depression in BCSs as well as to improve fatigue, insomnia, sexual dysfunction, and health-related quality of life in this group. This study also aims to evaluate the usefulness, usability, and preliminary feasibility of iNNOVBC. Methods: iNNOVBC was developed using a user-centered design approach involving its primary and secondary end users, that is, BCSs (11/24, 46%) and mental health professionals (13/24, 54%). We used mixed methods, namely in-depth semistructured interviews, laboratory-based usability tests, short-term field trials, and surveys, to assess iNNOVBCs usefulness, usability, and preliminary feasibility among these target users. Descriptive statistics were used to characterize the study sample, evaluate performance data, and assess survey responses. Qualitative data were recorded, transcribed verbatim, and thematically analyzed. Results: Overall, participants considered iNNOVBC highly useful, with most participants reporting on the pertinence of its scope, the digital format, the relevant content, and the appropriate features. However, various usability issues were identified, and participants suggested that the program should be refined by simplifying navigation paths, using a more dynamic color scheme, including more icons and images, displaying information in different formats and versions, and developing smartphone and tablet versions. In addition, participants suggested that tables should be converted into plain textboxes and data visualization dashboards should be included to facilitate the tracking of progress. The possibility of using iNNOVBC in a flexible manner, tailoring it according to BCSs changing needs and along the cancer care continuum, was another suggestion that was identified. Conclusions: The study results suggest that iNNOVBC is considered useful by both BCSs and mental health professionals, configuring a promising point-of-need solution to bridge the psychological supportive care gap experienced by BCSs across the survivorship trajectory. We believe that our results may be applicable to other similar programs. However, to fulfill their full supportive role, such programs should be comprehensive, highly usable, and tailorable and must adopt a flexible yet integrated structure capable of evolving in accordance with survivors changing needs and the cancer continuum.
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| 5. |
- Micaux, Claire, et al.
(författare)
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Efficacy of a Web-Based Psychoeducational Intervention for Young Adults with Fertility-Related Distress following Cancer (Fex-Can) : Randomized Controlled Trial
- 2022
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Ingår i: JMIR Cancer. - : JMIR Publications. - 2369-1999. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking.Objective: This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) intervention is superior to standard care in reducing fertility-related distress and related psychosocial outcomes in young adults with cancer.Methods: This randomized controlled trial evaluated a 12-week, web-based, automated self-help intervention for fertility-related distress following cancer—Fex-Can Fertility. Individuals were identified via Swedish national quality registries, and those reporting fertility-related distress 1.5 years after diagnosis were invited. A total of 100 women and 24 men (aged 19-40 years) answered self-administered surveys at baseline (T0), directly after the intervention (T1), and 3 months later (T2). The main outcome was fertility-related distress, which was measured by using the 6-dimension Reproductive Concerns After Cancer (RCAC) scale. The secondary outcomes were health-related quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), emotional distress (Hospital Anxiety and Depression Scale), fertility-related knowledge, and fertility self-efficacy. In addition, the intervention group (IG) reported self-perceived changes in problems related to fertility after cancer (T1). 2-tailed t tests and linear mixed models, including intention-to-treat and subgroup analyses, were performed to compare the effects of the intervention with those of standard care.Results: Although 62% (31/50) of the participants in the IG stated that their concerns about fertility were fewer after the intervention, there were few statistically significant group differences in the main outcome (RCAC) at T1 and T2. Compared with controls, the IG rated lower distress concerning the dimension child’s health at T2 (P=.003; effect size [ES]=0.64). This difference was maintained when adding group and time interactions (intention-to-treat: P=.003; ES=0.58). The IG also had better self-perceived cancer-related fertility knowledge at T1 (P=.05; ES=0.35) and T2 (P=.01; ES=0.42) than the control group. Subgroup analyses based on dose or adherence and baseline RCAC scores did not substantially alter these results. Overall, the use of the web-based program was low.Conclusions: The Fex-Can intervention had small to moderate positive effects on cancer-related fertility knowledge and distress related to child’s health. The lack of group differences in other dimensions of fertility distress and related secondary outcomes contrasted with reports on self-perceived improvement after the intervention. The Fex-Can Fertility program may be a useful complement to routine psychosocial support in the clinical care of young women and men with cancer.
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| 6. |
- Petros, Nuhamin Gebrewold, et al.
(författare)
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Predictors of the Use of a Mental Health–Focused eHealth System in Patients With Breast and Prostate Cancer : Bayesian Structural Equation Modeling Analysis of a Prospective Study
- 2023
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Ingår i: JMIR Cancer. - : JMIR Publications. - 2369-1999. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Background: eHealth systems have been increasingly used to manage depressive symptoms in patients with somatic illnesses. However, understanding the factors that drive their use, particularly among patients with breast and prostate cancer, remains a critical area of research.Objective: This study aimed to determine the factors influencing use of the NEVERMIND eHealth system among patients with breast and prostate cancer over 12 weeks, with a focus on the Technology Acceptance Model.Methods: Data from the NEVERMIND trial, which included 129 patients with breast and prostate cancer, were retrieved. At baseline, participants completed questionnaires detailing demographic data and measuring depressive and stress symptoms using the Beck Depression Inventory–II and the Depression, Anxiety, and Stress Scale–21, respectively. Over a 12-week period, patients engaged with the NEVERMIND system, with follow-up questionnaires administered at 4 weeks and after 12 weeks assessing the system’s perceived ease of use and usefulness. Use log data were collected at the 2- and 12-week marks. The relationships among sex, education, baseline depressive and stress symptoms, perceived ease of use, perceived usefulness (PU), and system use at various stages were examined using Bayesian structural equation modeling in a path analysis, a technique that differs from traditional frequentist methods.Results: The path analysis was conducted among 100 patients with breast and prostate cancer, with 66% (n=66) being female and 81% (n=81) having a college education. Patients reported good mental health scores, with low levels of depression and stress at baseline. System use was approximately 6 days in the initial 2 weeks and 45 days over the 12-week study period. The results revealed that PU was the strongest predictor of system use at 12 weeks (βuse at 12 weeks is predicted by PU at 12 weeks=.384), whereas system use at 2 weeks moderately predicted system use at 12 weeks (βuse at 12 weeks is predicted by use at 2 weeks=.239). Notably, there were uncertain associations between baseline variables (education, sex, and mental health symptoms) and system use at 2 weeks, indicating a need for better predictors for early system use.Conclusions: This study underscores the importance of PU and early engagement in patient engagement with eHealth systems such as NEVERMIND. This suggests that, in general eHealth implementations, caregivers should educate patients about the benefits and functionalities of such systems, thus enhancing their understanding of potential health impacts. Concentrating resources on promoting early engagement is also essential given its influence on sustained use. Further research is necessary to clarify the remaining uncertainties, enabling us to refine our strategies and maximize the benefits of eHealth systems in health care settings.
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| 7. |
- Wennerberg, Camilla, et al.
(författare)
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Effects of Web-Based and Mobile Self-Care Support in Addition to Standard Care in Patients After Radical Prostatectomy : Randomized Controlled Trial
- 2023
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Ingår i: JMIR Cancer. - : JMIR Publications. - 2369-1999. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Background: Prostate cancer is a common form of cancer that is often treated with radical prostatectomy, which can leave patients with urinary incontinence and sexual dysfunction. Self-care (pelvic floor muscle exercises and physical activity) is recommended to reduce the side effects. As more and more men are living in the aftermath of treatment, effective rehabilitation support is warranted. Digital self-care support has the potential to improve patient outcomes, but it has rarely been evaluated longitudinally in randomized controlled trials. Therefore, we developed and evaluated the effects of digital self-care support (electronic Patient Activation in Treatment at Home [ePATH]) on prostate-specific symptoms.Objective: This study aimed to investigate the effects of web-based and mobile self-care support on urinary continence, sexual function, and self-care, compared with standard care, at 1, 3, 6, and 12 months after radical prostatectomy.Methods: A multicenter randomized controlled trial with 2 study arms was conducted, with the longitudinal effects of additional digital self-care support (ePATH) compared with those of standard care alone. ePATH was designed based on the self-determination theory to strengthen patients' activation in self-care through nurse-assisted individualized modules. Men planned for radical prostatectomy at 3 county hospitals in southern Sweden were included offline and randomly assigned to the intervention or control group. The effects of ePATH were evaluated for 1 year after surgery using self-assessed questionnaires. Linear mixed models and ordinal regression analyses were performed.Results: This study included 170 men (85 in each group) from January 2018 to December 2019. The participants in the intervention and control groups did not differ in their demographic characteristics. In the intervention group, 64% (53/83) of the participants used ePATH, but the use declined over time. The linear mixed model showed no substantial differences between the groups in urinary continence (beta=-5.60; P=.09; 95% CI -12.15 to -0.96) or sexual function (beta=-.12; P=.97; 95% CI -7.05 to -6.81). Participants in the intervention and control groups did not differ in physical activity (odds ratio 1.16, 95% CI 0.71-1.89; P=.57) or pelvic floor muscle exercises (odds ratio 1.51, 95% CI 0.86-2.66; P=.15).Conclusions: ePATH did not affect postoperative side effects or self-care but reflected how this support may work in typical clinical conditions. To complement standard rehabilitation, digital self-care support must be adapted to the context and individual preferences for use and effect.
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