| 1. |
- Blomberg, Karin, 1970-, et al.
(författare)
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Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer : Scoping the perspectives of patients, professionals and literature
- 2016
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 21, s. 139-145
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Under-diagnosed and uncontrolled symptoms in patients with prostate cancer during radiotherapy can have a negative impact on the individual's quality of life. An opportunity for patients to report their symptoms systematically, communicate these symptoms to cancer nurses and to receive self-care advice via an application in an Information and Communication Technology-platform could overcome this risk. The content in the application must precisely capture symptoms that are significant to both patients and health care professionals. Therefore, the aim of the study was to map and describe symptoms and self-care strategies identified by patients with prostate cancer undergoing radiotherapy, by health care professionals caring for these patients, and in the literature.Methods: The study combines data from interviews with patients (n ¼ 8) and health care professionals (n ¼ 10) and a scoping review of the literature (n ¼ 26) focusing on the period during and up to 6 months after radiotherapy.Results: There was a concordance between the patients, health care professionals, and the literature on symptoms during and after radiotherapy. Urinary symptoms, bowel problems, pain, sexual problems, fatigue, anxiety, depression, cognitive impairment and irregular symptoms were commonly described during the initial treatment period. Self-care strategies were rarely described in all three of the sources.Conclusions: The results show which symptoms to regularly assess using an Information and Communication Technology-platform for patients with newly-diagnosed prostate cancer during radiotherapy. The next step is to evaluate the efficacy of using the platform and the accuracy of the selected symptoms and self-care advice included in a smartphone application.
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| 2. |
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| 3. |
- Christiansen, Mats, 1972-
(författare)
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Patient experiences and the influence on health literacy and self-care using mHealth to manage symptoms during radiotherapy for prostate cancer
- 2019
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Prostate cancer is a diagnosis that can affect the men’s quality of life both due to the symptoms related to the disease and the treatment the men receive. Treatment with radiotherapy for prostate cancer in Sweden takes place at outpatient clinics, where the patient visits daily for radiotherapy and then returns home. Most of the time the patient is experiencing the symptoms and side-effects at home without health-care professionals easily accessible. To facilitate person-centered care and improve clinical management when hospital care is moving to outpatient care, the app (Interaktor) for smartphones and tablets was developed. Using patient-reported outcomes (PRO), the app was intended to identify symptoms early, assess them in real time, and provide symptom-management support during radiotherapy for prostate cancer. Aims: The overall objective of the intervention described in this thesis, was to facilitate symptom management for patients with prostate cancer assisted with an interactive app during radiotherapy treatment.Methods: The two studies included in this thesis come from one trial. A descriptive investigation evaluated the intervention group’s use and perception of the using the app, and a quasi-experimental investigation compared those using the app with a historical control group not using the app to evaluate the effect on health literacy and self-care agency. The patients (n=130) were recruited consecutively from two university hospitals in Sweden between April 2012 and October 2013. The intervention group (n=66) had access to the app during 5-7 weeks of radiotherapy and three additional weeks. The intervention group’s use of the app was logged. Health literacy was measured using the Swedish Functional Health Literacy Scale (FHL) and the Swedish Communicative and Critical Health Literacy Scale (CCHL), and the Appraisal of Self-care Agency scale, version A (patient’s assessment) (ASA-A) for self-care agency. Transcribed notes from phone or face-to-face interviews about participants’ experiences of using and reporting in the app were analyzed.Results: In the intervention group using the app, adherence to daily reports was 87% (Md 92%, 16-100%), and generated 3,536 reports. All listed symptoms were used, where the most common being: urinary urgency, fatigue, hot flushes, and difficulties in urinating. A total of 1,566 alerts were generated, with 1/3 being severe (red alert). The app was reported in the interviews as easy to use, the reporting became routine; to report facilitated reflection over symptoms, the symptoms were relevant although some found that nuancing severity was hard. Using the app was reported as providing a sense of security. Substantial portions of the participants showed inadequate FHL and CCHL at baseline for both groups. CCHL changed significantly for the intervention group from baseline to three months after ended treatment (p = 0.050). Functional health literacy and self-care agency did not reveal any statistically significant differences over time for either group. Conclusions: The conclusions to draw from this thesis are that an mHealth intervention, the app Interaktor, served as a supportive tool for the patients to assess and manage symptoms during the radiotherapy for prostate cancer. The intervention provided the patients with a sense of safety, increased awareness of own well-being and a significant improvement in communicative and critical health literacy was found. The portions of inadequate levels of health literacy reported leave substantial groups of patients more vulnerable in assessing and managing symptoms when treated with radiotherapy for prostate cancer. Although health literacy levels include notable portions of patients in this study that have inadequate levels of both functional and communicative and critical health literacy, the adherence of using the app was high.
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| 4. |
- Crafoord, Marie-Therése, et al.
(författare)
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Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer : Mixed Methods Study
- 2020
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 22:8
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 5. |
- Crafoord, Marie-Therése, et al.
(författare)
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Patients' Individualized Care Perceptions and Health Literacy Using an Interactive App During Breast and Prostate Cancer Treatment
- 2023
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Ingår i: Computers, Informatics, Nursing. - : Wolters Kluwer. - 1538-2931 .- 1538-9774. ; 41:9, s. 706-716
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Ehrsson, Ylva Tiblom, et al.
(författare)
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Head and neck cancer patients' perceptions of quality of life and how it is affected by the disease and enteral tube feeding during treatment
- 2015
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Ingår i: Upsala Journal of Medical Sciences. - : Uppsala Medical Society. - 0300-9734 .- 2000-1967. ; 120:4, s. 280-289
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To explore individual quality of life in patients with head and neck cancer from diagnosis up to 3 months after termination of radiotherapy.RESEARCH QUESTIONS: 1) Which areas in life are important to quality of life, and which are influenced by the disease and by having oral or enteral nutrition; and 2) Which areas in life are influenced by having a nasogastric feeding tube (NGT) or a percutaneous endoscopic gastrostomy (PEG) tube?MATERIAL AND METHODS: Data were collected in 36 patients. Semi-structured interviews were conducted using an extended version of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and analysed with content analysis.RESULTS: Negative and positive experiences of quality of life in general were about relation to family, own health, and leisure activities. Negative impacts on physical, psychological, existential and social problems, but also positive experiences are described by the patients related to the disease. More than half expressed eating-related problems. Enteral nutrition entailed negative and positive experiences, and no greater variations were described by the patients with NGT or PEG tube. Overall, there were interindividual variations.CONCLUSIONS: The patients' perception of general or disease-related quality of life was not affected by whether they had enteral nutrition or not. From the patients' perspective neither of the two feeding tubes (NGT or PEG) was clearly in favour. We suggest that more studies are needed on how the choice of enteral feeding tube can be evidence-based, and incorporating the patients' perspective.
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| 7. |
- Fjell, Maria, et al.
(författare)
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Patients’ Experiences of Care With or Without the Support of an Interactive App During Neoadjuvant Chemotherapy for Breast Cancer: Interview Study
- 2022
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Ingår i: JMIR Nursing. - : JMIR Publications. - 2562-7600. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 8. |
- Fjell, Maria, et al.
(författare)
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Patients’ experiences of using an interactive appduring treatment for breast cancer
- 2018
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Ingår i: Quality of Life Research. - : Springer. - 0962-9343 .- 1573-2649. ; 27:s1, s. s20-
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
- Fjell, Maria, et al.
(författare)
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Reduced symptom burden with the support of an interactive app during neoadjuvant chemotherapy for breast cancer - A randomized controlled trial
- 2020
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Ingår i: Breast. - : Elsevier. - 0960-9776 .- 1532-3080. ; 51, s. 85-93
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 10. |
- Gellerstedt, Linda, et al.
(författare)
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Men's experiences of receiving a prostate cancer diagnosis after opportunistic screening : A qualitative descriptive secondary analysis
- 2022
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Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:5, s. 2485-2491
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Prostate cancer is one of the most common types of cancer in men and could occur without symptoms. Screening has been debated but remains controversial and, in most countries, organized population-based screening does not exist. The aim of this study was to describe men's experiences of receiving a prostate cancer diagnosis after opportunistic screening.METHODS: This study is a secondary analysis from interviews with 17 men (aged 56-80 years) who had undergone curative treatment for prostate cancer. Data were collected in an urban region of Sweden through interviews conducted face to face or by telephone. An inductive content analysis was used with Consolidated criteria for Reporting Qualitative research as a reporting checklist.RESULTS: Two main categories were identified. Screening is a lifesaver enclosed by ethical dilemmas reflects how men considered screening as a lifesaving test. Testing was surrounded by injustice and an eagerness to encourage other men to undergo screening. Facing challenges during diagnosis reflects the men's experiences of being in an unknown field yet expected to engage in decision-making concerning appropriate treatment. Receiving the diagnosis rendered mixed emotions about having a cancer disease, that the treatment could cause lifelong symptom distress and the men described being hesitant to talk about their diagnosis.CONCLUSIONS: The findings highlight men's opinions about screening and that the lack of routine screening represents injustice. The men considered this as an ethical question of lifesaving justice, while stakeholders may argue that screening could lead to unnecessary suffering and overtreatment. Men do not always talk openly about their diagnosis, linked to the fact that it concerns intimate areas. It is important to balance the information in relation to shared decision-making regarding treatment. Health care professionals have an ethical responsibility to support and coach the patient in their decision.PATIENT OR PUBLIC CONTRIBUTION: This study was based on interviews with men who had experienced a diagnosis of prostate cancer.
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