Support For Breast Cancer Patients Research Articles

Experiences of Women in Sierra Leone Relating to Accessing Breast Cancer Treatment

The lack of consistent access to breast cancer care and treatment remains a significant problem for women diagnosed with breast cancer in Sierra Leone. The instability of the political structure has created an environment with a high level of illiteracy and financial hardship among the female population, resulting in a significant deficiency in information relating to symptoms and the detection of breast cancer. To study the lived experience of women living in Sierra Leone who were diagnosed with breast cancer, I [the first author] used a descriptive phenomenological approach. I conducted semi-structured interviews based on Andersen and Newman’s healthcare utilization model, identifying predisposing, enabling, and need factors (Andersen & Newman, 1973). I recruited 10 participants by placing flyers in two organizations supporting breast cancer patients and used snowball sampling. Findings from the study showed that participants were aware of breast cancer and the risks associated with delayed cancer treatment. Social structures were identified as the main contributors to accessing breast cancer screening and selecting a health facility for treatment. Perceptions of affordability, quality of services, and recommendations by previous clients simultaneously influenced the selection of a health facility. The findings may assist health systems with addressing access to breast cancer care and treatment for women in Sierra Leone. Government officials may utilize the findings from this study to develop healthcare policies regarding access to breast cancer treatment.

Social Support in Quality of Life among Breast Cancer Patients after Diagnosis: A Bibliometric Analysis

In terms of bibliometric analysis, there are no studies related to the impact of social support on breast cancer survivors' quality of life. Therefore, this study aims to provide a bibliometric assessment of results on social support in quality of life in breast cancer patients. The studies for the dataset were selected from Scopus published in the year 2001–2021 based on their relevancy to the established subjects. The VOSviewer software was used for bibliometric analysis to represent the performance of publications covering annual outputs, mainstream journals leading countries, institutions, research tendencies, and hotspots. The analysis of the findings indicated only 45 articles over the range of 2001-2021. The highest number of publications was published in 2021, and the lowest was in 2002-2004 and 2006. Social support strongly correlates with the psychological adjustment of adherence to cancer treatment. Only one study failed to find an association between social support and suicide after a cancer diagnosis. Meanwhile, China, the United States, and Hong Kong contributed to social support. Instrumental, financial, information, and emotional support were reported as domains needed to support breast cancer patients. This bibliometric analysis provides the results of thoughts and insights about the development needed by breast cancer patients to prolong survival.

African American Women Breast Cancer Survivors: Coping with the COVID-19 Pandemic.

African American women breast cancer survivors are among those with the greater burden of cancer. Breast cancer is the second leading cause of death among black women, and this death rate is 40% higher than that of white women. The COVID-19 pandemic increased the burden of morbidity and mortality among this population of cancer survivors. In this report, we explore the ways in which the COVID-19 pandemic was a source of stress for African American women breast cancer survivors and their subsequent responses to these stressors. This is a qualitative descriptive study with content analysis of data from the narratives of 18 African American breast cancer survivors. Participants were interviewed via phone and video conferencing platform and asked questions related to their experiences with the COVID-19 pandemic. The findings suggest stressors associated with (1) potential COVID-19 spreaders in their immediate environments; (2) closures and restricted access to social- and faith-based activities; (3) televised news broadcasts of COVID-19; and (4) disruptions to planned cancer prevention and control healthcare. Three categories emerged that captured the ways in which these women responded to stressors during the early phase of this pandemic: (1) seeking control in their social environments; (2) following the rules; and (3) seeking support from God, family, and friends. These findings can be used to better support breast cancer patients during the early phases of a pandemic.

Medico-social substantiation of the issue of quality of life in patients with breast cancer and finding ways to improve it

The quality of life of patients is one of the indicators of the medical care effectiveness for cancer patients. In order to study the main aspects of the quality of life of patients with breast cancer, a survey of 400 patients at the stage of their inpatient treatment in oncological institutions in nine regions of Ukraine (Chernihiv, Zaporizhia, Dnipropetrovsk, Kyiv, Poltava, Khmelnytsky, Ivano-Frankivsk, Zakarpattia and Lviv) using the EORTC QLQ-C30 and EORTC QLQ-BR45 questionnaires was carried out. In Ukraine, as of the pre-war period (November 2021 – February 2022), the quality of life of breast cancer patients equaled 53.22 on a 100-point scale. The most pronounced impact of breast cancer on the quality of life of the patient was observed in the psycho-emotional sphere (71.26), role functioning (70.48), views on future prospects (30.95). Patients complained of financial difficulties (44.19), fatigue (35.16), sleep disturbances (33.00), hair loss (43.41), as well as decreased sexual function (16.06) and pleasure (18.16 points). Given the low quality of life of breast cancer patients, they need psychological support, which should be aimed at adapting to the manifestations of the disease and future prospects, and the quality of life of patients should be one of the indicators in the course of treatment and providing psychological support. Since patients who have received social and psychological support from their doctors and friends/family have higher quality of life, we consider it necessary to focus on developing a comprehensive program to support breast cancer patients in collaboration with society, family and workplace.

Mobile Applications Available in Germany Supporting Breast Cancer Patients During Treatment and Aftercare: a Systematic Review.

Purpose Systematic evaluation of health apps designed to support and aid remote monitoring of patients during breast cancer treatment and aftercare. Method A systematic search and assessment of apps was conducted using search terms: breast cancer; breast cancer therapy; and breast cancer aftercare. Evaluation criteria were user assessments, scientifically published benefits, user-friendliness, data protection, app individualization, motivation, and financial aspects. Up to two points (P) could be awarded per criterion. The lowest possible score was 0P and the maximum was 28P. Three examiners from different institutions independently assessed the apps according to the specified criteria. Reference value was defined as the average value given by the examiners. Apps with > 18P were classified as “recommended”; ≥ 11–≤ 18P as “partially recommended” and ≤ 10P as “not recommended”. Results A total of 776 apps (n = 24 from the Apple App Store, n = 752 from the Google Play Store) were identified via search query. After applying exclusion criteria, 36 apps (n = 1 from the Apple App Store; n = 35 from the Google Play Store) were evaluated. Using the mean point values of the examiners, 20 apps were classified as not recommended and 12 as partially recommended (≥ 11–≤ 18P). Four apps were rated partially recommended by two examiners and recommended by one examiner. Three apps were rated as recommended by all examiners. Conclusion Only a small minority of available apps meet recommendation criteria. Use of these apps may benefit breast cancer patients.

Bridging the Gap: Investigating the Role of Social Workers in Supporting Metastatic Breast Cancer Patients in Nigeria

ABSTRACT Cancer is a disease common in every country around the globe with high incidences and deaths. Receiving a breast cancer diagnosis is often associated with a death sentence which makes the individual exhibit self-denial attributes, mixed negative emotions, depression, and anxiety. This study investigated the gap in supportive care and the role of social workers in the management of metastatic breast cancer patients in Nigeria. This study employed a qualitative method using Key Informant Interviews (KII). A total of 12 healthcare professionals in the area of medical social work, palliative care, and medical oncology were engaged in collecting the required information. The result revealed that social workers play significant roles in every aspect of the cancer care continuum – diagnosis, treatment, reintegration, or palliative care. Social workers help metastatic breast cancer patients in Nigeria, however, there are growing challenges to their roles. Most unskilled professionals often present themselves as social workers who do not meet professional standards or perform the best practice.

Avoidant coping as mediator of the relationship between rumination and mental health among family caregivers of Chinese breast cancer patients.

Family caregivers of cancer patients were often referred to the 'forgotten patients', yet little researches have been conducted on their mental health. Rumination might put family caregivers at risk for psychological distress during the caregiving, such as stress and anxiety. The aim of the present study was to explore the relationship between rumination, stress and anxiety among family caregivers of breast cancer patients in China and examine the mediating role of avoidant coping in this relationship. Face-to-face questionnaire interviews were conducted with a sample of 99 caregivers from the public oncology hospital. They were assessed with stress, anxiety, rumination and avoidant coping by Chinese Perceived Stress Scale, Zung's Self-Rating Anxiety Scale, Ruminative Responses Scale and Coping Strategy Indicator. Structural equation modelling was applied to assess the mediation analysis. The reporting scores of participants indicated the incidence of anxiety was 17.2%. Rumination could directly predict stress (β = 0.58, p < 0.01) and anxiety (β = 0.46, p < 0.01) and also predict stress and anxiety via the mediator of avoidant coping (stress: β = 0.087, p < 0.01; anxiety: β = 0.109, p < 0.01). The important role played by family caregivers in supporting breast cancer patients is well recognised. The findings suggested that rumination and avoidant coping may be two critical risk factors for family caregivers of breast cancer developing stress and anxiety. This study highlights the importance of preventing avoidant coping, which plays a critical role for developing interventions for this vulnerable group.

Abstract OT-39-01: Artificial intelligence supporting cancer patients across Europe - the ASCAPE project for breast cancer patients

Abstract Background Many breast cancer patients experience adverse effects of cancer or treatment, which can considerably decrease quality of life (QoL). The current strategy of supporting breast cancer patients does not meet their needs due to the limited personalized-based approach in rehabilitation plan and the lack of healthcare, financial and other resources. ASCAPE (Artificial intelligence Supporting CAncer Patients across Europe) is a collaborative research project involving 15 partners from 7 countries, including academic medical centers, small and medium-sized enterprises, research centers and universities, aiming to leverage the recent advances in Big Data and AI (Artificial Intelligence) to support cancer patients’ QoL and health status. Specifically, ASCAPE aims to provide personalized- and AI-based predictions for QoL issues in breast cancer patients as well as suggest potential interventions to their physicians. Trial design During the first part of the project, large-scale retrospective datasets with breast cancer patients will be analyzed to develop and train AI-based models for specific QoL issues. During the second part of the project, a multicenter prospective longitudinal study is planned. Eligible patients will be followed for one year with validated questionnaires regarding different QoL issues, and wearables that will collect active monitoring data on physical activity, sleep pattern, and heart rate. The collected data will be used to further train and optimize the AI-based models and personalized-based intervention suggestions.Based on the retrospective and prospective data, an ASCAPE-integrated prototype will be developed, enabling personalized- and AI-based predictions and intervention suggestions. This approach will be evaluated at the end of the prospective study regarding patients´ and physicians´ experience as well as health economics. Eligibility criteria Breast cancer patients planned for curative treatment with surgery with or without oncological therapy or breast cancer patients at least 1 year post-treatment (except endocrine therapy) will be eligible for the prospective study. Specific aims 1.To develop and optimize AI-based predictions for QoL issues in breast cancer patients as well as potential intervention suggestions.2.To evaluate the AI-based follow-up approach for breast cancer survivors in terms of patients´ experience, physicians´ experience, and health economics. Statistical methods For discrete QoL outcome variables, ASCAPE will examine the efficiency of classification-based machine learning models trained using decision tree learning algorithms, nearest-neighbors based algorithms, probabilistic learning algorithms, support vector machines and (deep) neural networks. Regressive counterparts of aforementioned methods will be analyzed for numeric QoL outcome variables including also regression specific methods (e.g., ridge regression, lasso regression and elastic net regression). The accuracy of trained models will be estimated relying on standard machine learning validation procedures such as the K-fold cross-validation and leave-one-out cross-validation. The ASCAPE platform will utilize state-of-the-art explainability techniques to make the machine learning models’ predictions transparent and comprehensible for the patient and the physician.Present accrual and target accrual Four retrospective datasets will be used for the first part of the project including approximately 18,000 breast cancer patients. For the prospective study, it is planned to be included about 30 patients monthly during a period of 12 months. Contact information for people with a specific interest in the trial https://ascape-project.eu/artificial-intelligence-supporting-cancer-patients-across-europe Citation Format: Antonios Valachis, Serge Autexier, Imma Grau, Lucian Itu, Dusan Jakotevic, Thanos Kosmidis, Montserrat Muñoz, Konstantinos Perakis, Johannes Rust, Milos Savic, Paris Kosmidis. Artificial intelligence supporting cancer patients across Europe - the ASCAPE project for breast cancer patients [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr OT-39-01.

Adopting a knowledge translation approach in healthcare co-production. A case study

PurposeThe paper aims to contribute to the debate concerning the use of knowledge translation for implementing co-production processes in the healthcare sector. The study investigates a case study, in which design was used to trigger knowledge translation and foster co-production.Design/methodology/approachThe paper employs a case study methodology by analysing the experience of “Oncology in Motion”, a co-production program devoted to the recovery of breast cancer patients carried on by the IRCCS C.R.O. of Aviano, Italy.FindingsResults show how design could help to translate knowledge from various stakeholders with different skills (e.g. scientists, physicians, nurses) and emotional engagement (e.g. patients and patients' associations) during all the phases of a co-production project to support breast cancer patients in a recovery path. Stewardship theory is used to show that oncology represents a specific research context.Practical implicationsThe paper highlights the vast practical contribution that design can have in empowering knowledge translation at different levels and in a variety of co-production phases, among different stakeholders, facilitating their engagement and the achievement of the desired outcomes.Originality/valueThe paper contributes to the literature on knowledge translation in co-production projects in the healthcare sector showing how design can be effectively implemented.

Identidad gráfica para un equipo de biomedicina universitario: consiguiendo notoriedad

The aim of this article is to present the work carried out by communication researchers within a biomedical engineering group that works against breast cancer at the University of Girona (Spain). It will gradually detail how the identity of the group was developed, how the storytelling was built, how we construct a Strategic Communication Plan, and the concrete and specific actions to achieve two objectives: to be visible and to obtain extra funding. It was assumed that one objective should be linked to the other. This paper is a real world application. It is based on the theoretical perspective of Institutional Theory as understood by Macagnan (2013), and the philosophy put forward by Abratt and Kleyn (2011). They state that corporate identity and corporate branding are inseparable elements that shape the reputation of an organisation, in the same way as the role played by the public. Thus, the strategic communication plan that was developed followed the guidelines outlined by Scheinsohn (2009), the flexibility outlined by Matilla (2009) and following Capriotti (2009) in relation to the phases of strategic management and its relationship with the public. First, we focused on seeking notoriety. The assumption was that by achieving visibility and awareness it would be more accessible to secure more funding. In other words, we tried to ensure that the biomedical contributions based on 3D engineering, developed within the team, did not go unnoticed. The mission of the project, called ONCOen3D, is to test new therapeutic targets against Triple Negative breast cancer, one of the most aggressive cancers, with a high degree of recurrence, which mostly affects young patients. The drug tests, which is one of the team's tasks, are tested, in our case, on matrices printed with 3D systems that, with low cost, allow many tests. This creative idea, the basis of the project, was absolutely unknown outside of academic walls, until this multidisciplinary research team incorporated experts from the area of communication. Thus, communicative actions were devised, scheduled and focused on different audiences to achieve notoriety. To begin with, the name and visual identity of ONCOen3D was created: a logo, a graphic identity embodied in communicative elements of dissemination (flyers, roll-ups) and institutional videos hosted on the corporate website. The videos explain and present the work both to a more specialized and scientific public, or to a more generalist public: patients, families and organizations supporting breast cancer patients. Other actions were aimed at achieving the second objective: to seek funding outside the usual channels of the university. Visits to the laboratories were scheduled to introduce the institutions and organizations with which we normally collaborate, and to engage new potential sponsors. Another event planned was the organization of a solidarity market for emerging talented designers. In addition, the informative story was constructed to present ONCOen3D in society through a classic technique of Public Relations: the press conference. The results were more than 50 impacts in national and international media; a remarkable publicity was obtained. This international presence prompted ONCOen3D to compete in the 3D Printing Academy Awards 2019 and win the Best Healthcare Application 2019 award. Therefore, these initial responses show that, with the multidisciplinary nature of the teams, dissemination is more effective in terms of both positioning and reputation. This project conceived and implemented with a Spanish public university is serving to give visibility to science.

Identidad gráfica para un equipo de biomedicina universitario: consiguiendo notoriedad / Graphic identity for a biomedical university team: gaining visibility

Identidad gráfica para un equipo de biomedicina universitario: consiguiendo notoriedad / Graphic identity for a biomedical university team: gaining visibility

Evaluating a digital tool for supporting breast cancer patients: a randomized controlled trial protocol (ADAPT)

BackgroundThere are a growing number of mHealth tools for breast cancer patients but a lack of scientific evidence for their effects. Recent studies have shown a mix of positive and negative impacts on users. Here we will assess the impact of OWise Breast Cancer, a mobile application for self-monitoring symptoms and managing care, on the process of self-management.MethodsThis randomized controlled trial with early stage breast cancer patients will assess the effect of OWise use on patient activation at 3 months from diagnosis measured by the PAM-13 questionnaire. We will also assess differences in changes in health-related quality of life, psychological distress, health status, and National Health Service (NHS) health resource utilization over the first year from diagnosis. Participants will be randomly allocated (1:1) to standard care or standard care plus OWise. Participants will complete questionnaires before starting anti-cancer treatment and at 3, 6, and 12 months from diagnosis. Clinical and patient-reported outcome data will be linked to health resource utilization data from Discover, an integrated care record of primary, secondary, and social care in North West London. We will measure contamination in the control group and adjust the sample size to mitigate the dilution of effect estimates. A per-protocol analysis will be conducted as a sensitivity analysis to assess robustness of the primary results.DiscussionThis study aims to generate evidence for the effectiveness of OWise at improving patient activation for women with early-stage breast cancer. The results will show the impact of using the tool at the patient level and the NHS health system level. The outcomes of the study will have implications for the application of OWise across the NHS for breast cancer patients and expansion into other tumor types. Assessing publicly available mHealth tools poses a challenge to trialists due to the risk of contamination. Here we apply various methods to measure, mitigate, and assess the effects of contamination.Trial registrationThe study was registered at clincaltrials.gov (NCT03866655) on 7 March 2019.

Online Support Seeking and Breast Cancer Patients: Changes in Support Seeking Behavior following Diagnosis and Transition off Cancer Therapy

ABSTRACT Transitions in breast cancer care are associated with significant increases in stress and anxiety, and this stress can negatively impact mental and physical health. Social support has been shown to alleviate such distress, but whether, how, and how often social support is accessed through existing support networks is unclear. Our study examines changes in social media use following breast cancer diagnosis and treatment, using hand-coded longitudinal data from 30 breast cancer survivors’ Facebook pages for the 6 months surrounding cancer diagnosis and for the 6 months surrounding transition off cancer therapy. Results revealed that following diagnosis, there was a significant increase in posting behavior and self-disclosure. However, this increase in posts did not correspond to an increase in support requests. In addition, while participants’ primary support requests were for resources, support provided tended to be lower-cost emotional support. Finally, temporal maps indicated that participants started off increasing their engagement but withdrew over time. Our findings suggest that Facebook offered participants a platform for continued social engagement and self-disclosure – but showed several indications that support was principally low-effort, limited quality, and ill-fitting.

Prospective assessment of contralateral prophylactic mastectomy decision-making in women with average risk: an application of perceptual mapping.

Women with early-stage unilateral breast cancer and no familial or genetic risk factors are increasingly electing contralateral prophylactic mastectomy (CPM), despite the lack of evidence demonstrating improved outcomes. To better understand and extend the literature focused on treatment decision-making, a survey was conducted among women with early-stage breast cancer and no associated risk factors, who were in the process of making a surgical decision. This prospective study sought to expand our understanding of the factors that influence patients' decision to have CPM, with the goal of providing healthcare providers with useful guidance in supporting breast cancer patients who are making treatment decisions. Data were collected for this prospective study through an internet survey. Results were analyzed using perceptual mapping, a technique that provides visual insight into the importance of specific variables to groups of women making different surgical decisions, not available through conventional analyses. Results suggest that women more likely to elect CPM demonstrate greater worry about breast cancer through experiences with others and feel the need to take control of their health through selection of the most aggressive treatment option. The information obtained offers guidance for the development of targeted intervention and counsel that will support patients' ability to make high quality, informed decisions.

The impact of health symptoms on health-related quality of life in early-stage breast cancer survivors

PurposeIn breast cancer patients, treatment-related health symptoms can occur that may affect their health-related quality of life (HRQoL). This study aimed to determine the impact of health symptoms on HRQoL in breast cancer patients up to 5 years after diagnosis.MethodsFemales surgically treated for early-stage breast cancer diagnosed between 2012 and 2016 (n = 876) were selected from the Netherlands Cancer Registry and invited for a survey about current health symptoms (‘Symptoms and Perceptions questionnaire’, SaP) and HRQoL (‘EORTC-QLQ-C30’). From the latter, functioning and global health were included. Mean scores were compared to norm population scores (T test). Multivariable linear regression analyses were performed to determine the association between health symptoms and global health and functioning.Results404 patients (46%) responded. The median age was 62.2 ± 10.9 years. Respondents had significantly lower mean scores for role, cognitive, emotional, and social functioning than the general population. The most frequently reported health symptoms were musculoskeletal (including pain/complaints in lower/upper extremities/back/neck; 71%) and central nervous system symptoms (including concentration impairment, dizziness, neuralgia; 66%), and fatigue (63%). While most symptoms affected functioning, irrespective of time since diagnosis, especially fatigue, musculoskeletal, central nervous system, and gastrointestinal symptoms were significantly associated (p < 0.05) with lower functioning.ConclusionsThe majority of health symptoms that occur after breast cancer treatment were associated with lower functioning of patients in daily life. This paper urges healthcare providers to support breast cancer patients in alleviating or coping with health symptoms, even years after end of treatment, to improve their functioning.

The relationship between anger regulation, mood, pain, and pain-related disability in women treated for breast cancer.

Anger, depressive symptoms, and anxiety are known reactions to cancer and suggested to modulate pain experience. We examined the association between anger regulation, mood, and pain in 952 breast cancer patients followed for 3 years. Preoperatively, the patients completed questionnaires about depressive symptoms (BDI), state anxiety (STAI), anger regulation (STAXI-2), and pains in the surgical and other areas. Experimental pain sensitivity was tested. In the follow-up, BDI and STAI were assessed at 1 and at 6 months and at 1, 2, and 3 years after surgery. Pain in the surgical area was evaluated during the first 7 days and at 1 and 3 years after surgery. Pain-related disability was assessed at 3 years after surgery. Latent profile analyses were performed to identify mood profiles, and regression analyses to find independent predictors for mood and pain variables. Anger inhibition and pain had associations with ongoing depressive symptoms and anxiety. Pain-related disability was associated with high anxiety at a hazard ratio (HR) of 2.24 (95% CI, 1.17-4.27), with older age (HR 1.07, 95% CI, 1.01-1.13), and with pain in the surgical area (HR 3.04, 95% CI, 2.41-3.85), but not with anger variables. Any relationship between anger regulation and pain intensity disappeared after controlling for age and mood. Different forms of pain are important to recognize and treat to support breast cancer patients' psychological well-being. Anger inhibition could be a target for psychotherapeutic intervention, to help with ongoing mood symptoms. The relationship between anger regulation and pain is not straightforward.

Evaluating a Digital Tool for Supporting Breast Cancer Patients

Evaluating a Digital Tool for Supporting Breast Cancer Patients

Use of Mental Health Apps by Breast Cancer Patients and Their Caregivers in the United States: Protocol for a Pilot Pre-Post Study.

BackgroundOver one-third of cancer patients experience clinically significant mental distress, and distress in caregivers can exceed that of the cancer patients for whom they care. There is an urgent need to identify scalable and cost-efficient ways of delivering mental health interventions to cancer patients and their loved ones.ObjectiveThe aim of this study is to describe the protocol to pilot a mobile app–based mental health intervention in breast cancer patients and caregivers.MethodsThe IntelliCare mental health apps are grounded in evidence-based research in psychology. They have not been examined in cancer populations. This pilot study will adopt a within-subject, pre-post study design to inform a potential phase III randomized controlled trial. A target sample of 50 individuals (with roughly equal numbers of patients and caregivers) at least 18 years of age and fluent in English will be recruited at a US National Cancer Institute designated clinical cancer center. Consent will be obtained in writing and a mobile phone will be provided if needed. Self-report surveys assessing mental health outcomes will be administered at a baseline session and after a 7-week intervention. Before using the apps, participants will receive a 30-min coaching call to explain their purpose and function. A 10-min coaching call 3 weeks later will check on user progress and address questions or barriers to use. Self-report and semistructured interviews with participants at the end of the study period will focus on user experience and suggestions for improving the apps and coaching in future studies.ResultsThis study is ongoing, and recruitment will be completed by the end of 2018.ConclusionsResults from this study will inform how scalable mobile phone-delivered programs can be used to support breast cancer patients and their loved ones.Trial RegistrationClinicalTrials.gov NCT03488745; https://clinicaltrials.gov/ct2/show/NCT03488745International Registered Report Identifier (IRRID)DERR1-10.2196/11452

My Alma: A Digital App Supporting Metastatic Breast Cancer Patients in Greece

Background: Current research has shown that women with MBC patients feel ashamed and isolated. In Greece, “Alma Zois”, as a patient group, has made several attempts to provide support, but with a moderate success. Nevertheless, MBC patients have unmet needs that consist of better information and knowledge about MBC, better support for physical and emotional impact of MBC and better quality of life. Especially when it comes to younger women, these needs seem to be less covered. The development of a specially designed digital application (app) will cover the gap between support services and MBC patients by embracing the digital era in a country where 66% of the population uses smartphones. Aim: The development of the app aims at: 1) providing useful information about metastatic breast cancer, 2) reaching out to MBC patients, 3) improving the quality of life, 4) increasing healthy behaviors, and 5) increasing compliance. Methods: The project “My Alma App” is designed according to three major pillars: 1) Awareness, 2) Support 3) Communication. The 1st part AWARENESS includes: information about MBC. Calendar - Daily record of healthy behaviors (walking, nutrition, etc.). The 2nd part SUPPORT includes: 1) Psychological advice provided by psycho-oncologists, 2) Emotional-meter: issue the daily question “How are you feeling today?” and based on the patient's answer, the app can provide multiple suggestions/call to action. The 3rd part COMMUNICATION includes: personalized motivation, calendar with reminders of medication, therapies and events that might be of interest according to each patient's profile. Results: To achieve the best quality for the project: 1) A technical development of the app is been held, 2) The app will be tested by a group of patients as a pilot study and 3) Updates and improvements based on users feedback (metastatic breast cancer patients) and latest scientific data will be made. After the official launch, a short satisfaction survey will be addressed to every registered user. Finally, to motivate patients to use the app, a special social media campaign about the app will be launched. Conclusion: It is expected that the app will provide to MBC patients ways and methods to deal with the emotional challenges, distress and ways to improve their daily activities and their quality of life. Upon the end of the launch of the app, it is expected that a number of 500 Stage III and IV breast cancer patients will start using the app. The number of people who will download the app, the data provided by app users and the ratings and answers on “emotion-meter” during a period of time will be indexes of impact of the project to the MBC community in Greece.

A novel patient decision aid for aftercare in breast cancer patients: A promising tool to reduce costs by individualizing aftercare

ObjectiveA patient decision aid (PtDA), was developed to support breast cancer patients making choices about their aftercare. The aim of this pilot was to test the effects of the PtDA on Shared Decision Making (SDM), Decision Evaluation (DES) in patients, consultation time, choice of aftercare and hospital costs. MethodsA prospective before-and-after study including a control (no PtDA-usage) and experimental group (PtDA-usage during consultation) was conducted in six hospitals. Patients were offered a choice between intensive (face-to-face consultations) and less intensive (telephonic or on demand consultations) aftercare. All patients filled out three validated questionnaires (baseline (T0), directly after the consultation (T1), three months later (T2)), assessing demographics (T0), SDM(T1) and DES (T1, T2). Hospital costs and choice of aftercare were assessed from the patients' files (T2). Effect sizes ( ɳp2: 0.01 = small; 0.06 = medium; 0.14 = large; φ: 0.1 = small, 0.3 = medium, 0.5 = large) and p-values were calculated using both univariate and multivariate GLMs, a repeated measures GLM and chi-square-tests. ResultsA small improvement in SDM ( ɳp2 = 0.02) and an effect ( ɳp2 = 0.10) on DES was found in the experimental group. Significantly more PtDA-users (51% vs. 29%, φ = 0.22) chose less intensive aftercare, leading to a small reduction of hospital costs (122 vs. 92 Euro, ɳp2 = 0.01), and a large increase in average consultation time (12.5 min; ɳp2 = 0.29). ConclusionThis pilot study showed promising effects of the PtDA on SDM and hospital costs. The PtDA can be developed further to potentially reduce the increased consultation time.