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  • 1. Biganzoli, Laura
    et al.
    Cardoso, Fatima
    Beishon, Marc
    Cameron, David
    Cataliotti, Luigi
    Coles, Charlotte E
    Delgado Bolton, Roberto C
    Trill, Maria Die
    Erdem, Sema
    Fjell, Maria
    European Oncology Nursing Society (EONS); Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
    Geiss, Romain
    Goossens, Mathijs
    Kuhl, Christiane
    Marotti, Lorenza
    Naredi, Peter
    Oberst, Simon
    Palussière, Jean
    Ponti, Antonio
    Rosselli Del Turco, Marco
    Rubio, Isabel T
    Sapino, Anna
    Senkus-Konefka, Elzbieta
    Skelin, Marko
    Sousa, Berta
    Saarto, Tiina
    Costa, Alberto
    Poortmans, Philip
    The requirements of a specialist breast centre2020In: Breast, ISSN 0960-9776, E-ISSN 1532-3080, Vol. 51, p. 65-84Article in journal (Refereed)
    Abstract [en]

    This article is an update of the requirements of a specialist breast centre, produced by EUSOMA and endorsed by ECCO as part of Essential Requirements for Quality Cancer Care (ERQCC) programme, and ESMO.

    To meet aspirations for comprehensive cancer control, healthcare organisations must consider the requirements in this article, paying particular attention to multidisciplinarity and patient-centred pathways from diagnosis, to treatment, to survivorship.

    The centrepiece of this article is the requirements section, comprising definitions; multidisciplinary structure; minimum case, procedure and staffing volumes; and detailed descriptions of the skills of, and resources needed by, members and specialisms in the multidisciplinary team in a breast centre.

    These requirements are positioned within narrative on European breast cancer epidemiology, the standard of care, challenges to delivering this standard, and supporting evidence, to enable a broad audience to appreciate the importance of establishing these requirements in specialist breast centres.

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  • 2.
    Crafoord, Marie-Therése
    et al.
    ivision of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Fjell, Maria
    ivision of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Sundberg, Kay
    ivision of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Nilsson, Marie
    ivision of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Langius-Eklöf, Ann
    ivision of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer: Mixed Methods Study2020In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, no 8, article id e17058Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Using mobile technology for symptom management and self-care can improve patient-clinician communication and clinical outcomes in patients with cancer. The interactive app Interaktor has been shown to reduce symptom burden during cancer treatment. It includes symptom assessment, an alert system for contact with health care professionals, access to self-care advice, and visualization of symptom history. It is essential to understand how digital interventions operate; one approach is to examine engagement by assessing usage and exploring user experiences. Actual usage in relation to the intended use-adherence-is an essential factor of engagement.

    OBJECTIVE: This study aimed to describe engagement with the Interaktor app among patients with breast or prostate cancer during treatment.

    METHODS: Patients from the intervention groups of two separate randomized controlled trials were included: patients with breast cancer receiving neoadjuvant chemotherapy (n=74) and patients with locally advanced prostate cancer receiving treatment with radiotherapy (n=75). The patients reported their symptoms daily. Sociodemographic and clinical data were obtained from baseline questionnaires and medical records. Logged data usage was retrieved from the server and analyzed descriptively and with multiple regression analysis. Telephone interviews were conducted with patients about their perceptions of using the app and analyzed using content analysis.

    RESULTS: The median adherence percentage to daily symptom reporting was 83%. Most patients used the self-care advice and free text message component. Among the patients treated for breast cancer, higher age predicted a higher total number of free text messages sent (P=.04). Among the patients treated for prostate cancer, higher age (P=.01) and higher education level (P=.04), predicted an increase in total views on self-care advice, while higher comorbidity (P=.004) predicted a decrease in total views on self-care advice. Being married or living with a partner predicted a higher adherence to daily symptom reporting (P=.02). Daily symptom reporting created feelings of having continuous contact with health care professionals, being acknowledged, and safe. Being contacted by a nurse after a symptom alert was considered convenient and highly valued. Treatment and time-related aspects influenced engagement. Daily symptom reporting was perceived as particularly meaningful at the beginning of treatment. Requests were made for advice on diet and psychological symptoms, as well as for more comprehensive and detailed information as the patient progressed through treatment.

    CONCLUSIONS: Patient engagement in the interactive app Interaktor was high. The app promoted patient participation in their care through continuous and convenient contact with health care professionals. The predictive ability of demographic variables differed between patient groups, but higher age and a higher educational level predicted higher usage of specific app functions for both patient groups. Patients' experience of relevance and interactivity influenced their engagement positively.

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  • 3.
    Crafoord, Marie-Therése
    et al.
    Karolinska Institutet.
    Sundberg, Kay
    Karolinska Institutet.
    Nilsson, Marie I.
    Karolinska Institutet.
    Fjell, Maria
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science. Karolinska Institutet.
    Langius-Eklöf, Ann
    Karolinska Institutet.
    Patients' Individualized Care Perceptions and Health Literacy Using an Interactive App During Breast and Prostate Cancer Treatment2023In: Computers, Informatics, Nursing, ISSN 1538-2931, E-ISSN 1538-9774, Vol. 41, no 9, p. 706-716Article in journal (Refereed)
    Abstract [en]

    The use of symptom management mobile apps can reduce patients' symptom burden during cancer treatment, but the evidence is lacking about their effect on care. Moreover, if patients' health literacy can be improved, it needs to be more rigorously tested. This study aimed to evaluate patients' perceptions of individualized care and health literacy using an interactive app in two randomized trials. Patients undergoing neoadjuvant chemotherapy for breast cancer (N = 149) and radiotherapy for prostate cancer (N = 150) were consecutively included and randomized into one intervention or control group. Outcome measures were Individualized Care Scale, Swedish Functional Health Literacy Scale, and Swedish Communicative and Critical Health Literacy Scale. In the breast cancer trial, no group differences were observed regarding individualized care or health literacy. Most patients had sufficient health literacy levels. In the prostate cancer trial, intervention group patients rated higher perceived individualized care regarding decision control at follow-up than the control group. Less than half had sufficient health literacy levels and intervention group patients significantly improved their ability to seek, understand, and communicate health information. Education level explained significant variance in health literacy in both trials. Using an interactive app can positively affect individualization in care and health literacy skills among patients treated for prostate cancer, although further research is warranted.

  • 4.
    Crafoord, M.-T.
    et al.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Fjell, Maria
    Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Nilsson, M.I.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Nilsson, M.I.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Sundberg, K.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Langius-Eklöf, A.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Patients’ usage and perception of an interactive app for symptom management and self-care during cancer treatment2019In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 30, no s5, p. v816-Article in journal (Refereed)
    Abstract [en]

    Background

    Employing apps in assessment of symptoms during cancer treatment facilitates detection of adverse events and may improve patient outcomes. Our interactive app Interaktor supports patients’ symptom management by regular symptom reporting, alerts for rapid access to staff in case of severe symptoms and continual access to relevant self-care advice. The aim of this study was to describe usage and explore perceptions of using Interaktor during cancer treatment.

    Methods

    The study includes the participants from the intervention arms of two separate randomized controlled trials (RCT) on patients with breast cancer (n = 74) during neoadjuvant chemotherapy and locally advanced prostate cancer (n = 75) during radiotherapy. It comprises usage metrics analysed by descriptive statistics and interviews analyzed by conventional content analysis.

    Results

    Adherence to daily reporting during treatment was in median above 80 %. Most patients viewed the information pages with self-care advice numerous times. The app was perceived user-friendly, faciliating interaction with health care professionals and supporting self care. Symptom reporting was a quick and comfortable way to access help. Using the app generated feelings of being monitored, involved and cared for. Further it supported attentiveness to and reflection of own well- being but could also serve as a reminder of illness. Some patients described that vigor, comorbidity, and cognitive side effects from the treatment influenced the motivation for and ability to symptom report. The information pages with self care advice were useful and appreciated and gave an idea of what was to be expected during treatment. Patients requested added and more comprehensive information on psychological symptoms and dietary advice.

    Conclusions

    The Interaktor app is a userfriendly and convenient alternative for patients contact and involvement with health care that aided symptom management, self-care and further enhanced patients participation in their care.

    Clinical trial identificationNCT02479607 and NCT02477137.

  • 5.
    Fjell, Maria
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science. Karolinska institutet.
    Digit-10 use of an interactive app as supportive care during treatment for breast cancer – results from a randomized controlled trial2023In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 31, no S1, p. S31-, article id 399Article in journal (Refereed)
  • 6.
    Fjell, Maria
    et al.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Langius-Eklöf, Ann
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Nilsson, Marie
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Sundberg, Kay
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Patients’ Experiences of Care With or Without the Support of an Interactive App During Neoadjuvant Chemotherapy for Breast Cancer: Interview Study2022In: JMIR Nursing, E-ISSN 2562-7600, Vol. 5, no 1, article id e39983Article in journal (Refereed)
    Abstract [en]

    Background: Neoadjuvant chemotherapy (NACT) is often recommended for patients with breast cancer with more aggressive tumor characteristics. As with all chemotherapies, they can cause substantially disturbing symptoms. Most patients receive their treatment as outpatients, which means that they must take responsibility for self-care and management of symptoms at home for a long period. Patients with breast cancer undergoing chemotherapy may not receive sufficient support for management of treatment-related symptoms. For patients undergoing NACT, it has been concluded that information and supportive needs are not always met. In our previous study, the use of mobile health to support patients with breast cancer undergoing NACT reduced symptoms during treatment with the support of an interactive app. Therefore, it is important to investigate how patients experience their care and explore any specific contribution that the app may have brought in care.

    Objective: This study aims to explore patients' experiences of care with or without the support of an interactive app during NACT for breast cancer.

    Methods: This qualitative study was part of a larger randomized controlled trial and included 40 individual face-to-face interviews conducted with patients in both intervention and control groups after the end of NACT. The interviews were audio recorded, and the data were analyzed inductively using thematic analysis.

    Results: No major differences in experience of care were observed between the groups. A total of 4 overarching themes emerged. In the first theme, The health care context, patients described care as assessible, although sometimes there was a lack of time and continuity with nurses. In the second theme, Being a recipient of care, it emerged that the patients experienced a warm and positive atmosphere at the clinics. In the third theme, Taking an active role as a patient, patients described being active in searching for information and various ways of participation in their own care. In the fourth theme, The value of the app, patients who had used the app experienced it as a complementary source of information, creating a sense of security. Using the app provided patients with the support of being contacted by a nurse if needed, enabled self-care, and facilitated the planning of daily activities.

    Conclusions: Overall, patients' experiences of care were similar and mostly positive. However, for patients using the app, it provided additional support for information and self-care and enhanced participation in their own care. The easy access to a nurse gave patients a sense of security. The findings suggest integrating an interactive app as a complement to standard care to support patients with breast cancer during treatment.

    International registered report identifier (irrid): RR2-DOI: 10.1186/s12885-017-3450-y.

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  • 7.
    Fjell, Maria
    et al.
    Karolinska institutet.
    Langius-Eklöf, Ann
    Karolinska institutet.
    Nilsson, Marie
    Karolinska institutet.
    Wengström, Yvonne
    Karolinska institutet.
    Sundberg, Kay
    Karolinska institutet.
    Patients’ experiences of using an interactive appduring treatment for breast cancer2018In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Quality of Life Research, ISSN 0962-9343, Vol. 27, no s1, p. s20-Article in journal (Refereed)
    Abstract [en]

    Aims: To evaluate patients' experiences of using an interactive app for reporting symptoms during neoadjuvant chemotherapy treatment for breast cancer.

    Methods: The research project is a multicenter Randomized Controlled Trial with a mixed method approach. The content of the interactive app (Interaktor) was developed from the perspective of patients, health care professionals and literature. It is made for use in a smart device including a 14‐symptom questionnaire based on a risk assessment model, which generates alerts to a nurse at the clinic if symptoms are severe. Patients have continuous access to self‐care advice and can follow their symptoms in graphs. The study includes patients recruited from two university hospitals in Sweden, 75 using the app during treatment in comparison to control group (n = 75) with standard care routines. Data was collected between 2015 and 2017 including logged data, interviews with patients and nurses concerning experiences of using the app and participation in care. Outcomes were collected at three time points by questionnaires including symptom distress, health literacy, perceptions of individualized care, sense of coherence and quality of life. Analysis of outcome data is currently ongoing.

    Results: Results: including logged data showed an 80% adherence to reporting in the app. A total of 16.299 symptoms were reported during the study period and the most frequent symptoms reported were fatigue, sleeping difficulties, pain, nausea, sadness and oral discomfort. Results: from interviews showed that patients using the app noted that it was easy to use with few technical problems. They considered the app as a source for information with the self‐care advice, helping them manage symptoms. Knowing that nurses at the clinic monitored them, led to a feeling of being looked after and cared for. The app was an easy way of getting in contact with the health care if symptoms were severe, which increased the interaction with caregivers, leading to a feeling of security, personalized and participatory care.

    Conclusions: Using the app during treatment for breast cancer can facilitate management of symptoms, participatory and individualized care.

  • 8.
    Fjell, Maria
    et al.
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    Langius-Eklöf, Ann
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    Nilsson, Marie
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden; Karolinska University Hospital, Function Area Social Work in Health Care, Stockholm, Sweden; Stockholm County Council, Academic Primary Health Care Center, Stockholm, Sweden.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden; Karolinska University Hospital, Cancer Theme, Stockholm, Sweden.
    Sundberg, Kay
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    Reduced symptom burden with the support of an interactive app during neoadjuvant chemotherapy for breast cancer - A randomized controlled trial2020In: Breast, ISSN 0960-9776, E-ISSN 1532-3080, Vol. 51, p. 85-93Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Neoadjuvant chemotherapy causes distressing symptoms, which have to be managed by patients at home. Assessing and acting upon relevant patient-reported symptoms regularly with the support of mHealth such as apps, has shown to decrease symptom burden and improve health-related quality of life (HRQoL). There is a lack of apps for patients with breast cancer which are tested in rigorous trials and only a few include interactive components for immediate clinical management. The aim of this study was to evaluate whether the use of the interactive app Interaktor improves patients' levels of symptom burden and HRQoL during neoadjuvant chemotherapy for breast cancer.

    MATERIALS AND METHODS: This randomized controlled trial included patients in an intervention group (n = 74) and a control group (n = 75), recruited at two university hospitals in Stockholm, Sweden. The intervention group used Interaktor for symptom reporting, self-care advice and support from health-care professionals during treatment, and the control group received standard care alone. Self-reported symptoms and HRQoL were assessed at two time points to determine differences between the groups.

    RESULTS: The intervention group rated statistically significant less symptom prevalence in nausea, vomiting, feeling sad, appetite loss and constipation. Overall symptom distress and physical symptom distress were rated statistically significant lower in the intervention group. Further, emotional functioning was rated statistically significant higher in the intervention group.

    CONCLUSIONS: By using the Interaktor app in clinical practice, patients get individual support when managing treatment-related symptoms during neoadjuvant chemotherapy for breast cancer, leading to decreased symptom burden and improved emotional functioning.

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  • 9.
    Langius-Eklöf, Ann
    et al.
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, 141 83 Huddinge, Stockholm, Sweden.
    Crafoord, Marie-Therése
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, 141 83 Huddinge, Stockholm, Sweden.
    Christiansen, Mats
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, 141 83 Huddinge, Stockholm, Sweden.
    Fjell, Maria
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, 141 83 Huddinge, Stockholm, Sweden.
    Sundberg, Kay
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, 141 83 Huddinge, Stockholm, Sweden.
    Effects of an interactive mHealth innovation for early detection of patient-reported symptom distress with focus on participatory care: protocol for a study based on prospective, randomised, controlled trials in patients with prostate and breast cancer2017In: BMC Cancer, E-ISSN 1471-2407, Vol. 17, no 1, article id 466Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cancer patients are predominantly treated as out-patients and as they often experience difficult symptoms and side effects it is important to facilitate and improve patient-clinician communication to support symptom management and self-care. Although the number of projects within supportive cancer care evaluating mobile health is increasing, few evidence-based interventions are described in the literature and thus there is a need for good quality clinical studies with a randomised design and sufficient power to guide future implementations. An interactive information and communications technology platform, including a smartphone/computer tablet app for reporting symptoms during cancer treatment was created in collaboration with a company specialising in health care management. The aim of this paper is to evaluate the effects of using the platform for patients with breast cancer during neo adjuvant chemotherapy treatment and patients with locally advanced prostate cancer during curative radiotherapy treatment. The main hypothesis is that the use of the platform will improve clinical management, reduce costs, and promote safe and participatory care.

    METHOD: The study is a prospective, randomised, controlled trial for each patient group and it is based on repeated measurements. Patients are consecutively included and randomised. The intervention groups report symptoms via the app daily, during treatment and up to three weeks after end of treatment, as a complement to standard care. Patients in the control groups receive standard care alone. Outcomes targeted are symptom burden, quality of life, health literacy (capacity to understand and communicate health needs and promote healthy behaviours), disease progress and health care costs. Data will be collected before and after treatment by questionnaires, registers, medical records and biomarkers. Lastly, participants will be interviewed about participatory and meaningful care.

    DISCUSSION: Results will generate knowledge to enhance understanding about how to develop person-centred care using mobile technology. Supporting patients' involvement in their care to identify problems early, promotes more timely initiation of necessary treatment. This can benefit patients treated outside the hospital setting in regard to maintaining their safety.

    CLINICAL TRIAL REGISTRATION: June 12 2015 NCT02477137 (Prostate cancer) and June 12 2015 NCT02479607 (Breast cancer).

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