| 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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| 11. |
- Gustavell, Tina, et al.
(författare)
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Symptoms and self-care following pancreaticoduodenectomy : Perspectives from patients and healthcare professionals - Foundation for an interactive ICT application
- 2017
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 26, s. 36-41
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Tidskriftsartikel (refereegranskat)abstract
- PurposePoor prognosis and a problematic recovery period after pancreaticoduodenectomy means that patients may benefit from early detection of symptoms and support for self-management. Interactive Information and Communication Technology tools can be used for this purpose, but the content needs to be relevant to patients as well as healthcare professionals. To facilitate development of the content of an application for this purpose, the aim of this study was to explore common symptoms and self-care in the first six months after pancreaticoduodenectomy, as identified by patients and healthcare professionals.MethodData were collected through individual interviews with patients (n = 14), along with two focus group interviews and one individual interview with healthcare professionals (n = 10). Data were analysed using qualitative content analysis.ResultsCommon symptoms after surgery were those related to eating, bowel function and emotional wellbeing, along with fatigue and pain. Some self-care activities and advice were mentioned in the interviews. The patients often experienced a lack of advice on self-care at discharge.ConclusionsThe results render knowledge of the symptoms it is important to be aware of and to assess regularly after pancreaticoduodenectomy. The results also contribute to knowledge about specific self-care related to these symptoms, even though it was not extensively described, and further research is needed to define evidence-based self-care advice.
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| 12. |
- Holmefur, Marie, 1968-, et al.
(författare)
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Measurement properties of the 13-item sense of coherence scale using Rasch analysis
- 2015
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Ingår i: Quality of Life Research. - : Springer Netherlands. - 0962-9343 .- 1573-2649. ; 24:6, s. 1455-1463
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The sense of coherence (SOC) scale is widely used and has an extensive history in research. The psychometric properties of the SOC scale have been investigated using classic test theory, but modern test theory enables a more multifaceted investigation of the properties of the SOC scale. The aim of this study was to explore the measurement properties of the SOC scale using the Rasch measurement model.Methods: SOC questionnaires from a sample of 623 healthy adults were analysed using Rasch analysis. Aspects analysed were rating scale functioning, item fit, unidimensionality, differential item functioning (DIF), targeting, and reliability.Results: Rating scale analysis showed that the seven scale steps were not utilized in the intended manner and that a shortening to five categories would be beneficial. Twelve out of the 13 items showed acceptable goodness-of-fit and 43 % of the variance was explained by the SOC dimension in the principal components analysis. There was no DIF between subgroups in the sample. The items were well targeted to the sample SOC level with no ceiling or floor effects. Item and person reliability were good and the person separation index was 2.05 indicating that the scale can separate three different levels of SOC, which corresponds well to its theoretical base.Conclusions: The SOC scale is generally well functioning; however, the three components of SOC seem to influence the PCA results. The scale would benefit from a reduction from seven to five scale steps, which would need to be investigated further.
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| 13. |
- Hälleberg Nyman, Maria, 1968-, et al.
(författare)
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Patients' Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer : Qualitative Study
- 2017
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Ingår i: JMIR mhealth and uhealth. - : JMIR Publications. - 2291-5222. ; 5:7
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Patients with prostate cancer are often cared for as outpatients during radiotherapy, which can be an aggravating circumstance for patient participation. There is a need to evaluate whether an interactive smartphone app could enable participation in care, specifically during treatment for prostate cancer. The interactive app (Interaktor) used in this study is developed in codesign with patients and health care professionals; it includes daily reports of symptoms, a risk assessment model, evidence-based self-care advice, along with the provision of immediate access to clinicians.OBJECTIVE: The aim of this study was to explore how patients with prostate cancer perceived their participation with or without the support of the smartphone app during radiotherapy.METHODS: A total of 28 prostate cancer patients receiving adjuvant radiotherapy were interviewed about their perceived participation in their own care. All the patients interviewed in this study participated in an intervention study where the control group received standard care that comprised having access to a contact nurse to turn to with any concerns during their treatment. In addition to standard care, the patients in the intervention group received the app downloaded in a smartphone. The patients' age ranged between 57 and 77 years; 17 patients used the smartphone app. The interviews were analyzed with directed qualitative content analysis.RESULTS: The four dimensions of patient participation, which include mutual participation, fight for participation, requirement for participation, and participation in getting basic needs satisfied, were confirmed as valid perspectives in the interviews with the patients with prostate cancer, irrespective of whether they used the smartphone app. However, the patients who had used the smartphone app described it as a facilitating factor, especially for mutual participation.CONCLUSIONS: Using innovative ways to communicate with patients, such as an interactive app for symptom management with contact with health care in real time, can successfully help achieve increased patient participation in care.
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| 14. |
- 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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| 15. |
- Langius-Eklöf, Ann, et al.
(författare)
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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 cancer.
- 2017
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Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 16. |
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| 17. |
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| 18. |
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| 19. |
- Sundberg, Kay, et al.
(författare)
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Early detection and management of symptoms using an interactive smartphone application (Interaktor) during radiotherapy for prostate cancer
- 2017
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Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 25:7, s. 2195-2204
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Patients undergoing radiotherapy for prostate cancer suffer from a variety of symptoms which influence health-related quality of life. We have developed an application (Interaktor) for smartphones and tablets for early detection, reporting and management of symptoms, and concerns during treatment for prostate cancer. The study evaluates the effect on symptom burden and quality of life when using the application for real-time symptom assessment and management during radiotherapy for localized prostate cancer.Methods: A non-randomized controlled study was used at two university hospitals in Sweden where 64 patients constituted a control group and 66 patients made up an intervention group. The intervention group was asked to report symptoms via the application daily during the treatment as well as 3 weeks after. The EORTC QLQ-C30 and its module PR25 and the Sense of Coherence questionnaire were administered at three time points in both groups.Results: The intervention group rated significantly lower levels of fatigue and nausea at the end of radiotherapy. Moreover, they had significantly less burden in emotional functioning, insomnia, and urinary-related symptoms at the end of treatment as well as 3 months later compared with the control group. In the multivariate analyses, with education and sense of coherence as covariates, the intervention group still significantly rated emotional functioning (p = 0.007), insomnia (p = 0.017), and urinary-related symptoms (p = 0.008) as better than the control group at T2.Conclusion: Study findings suggest that Interaktor could be an efficient mHealth tool for facilitating supportive care needs during cancer treatment.
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| 20. |
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| 21. |
- Sundberg, Kay, et al.
(författare)
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Feasibility of an interactive ICT-platform for early assessment and management of patient-reported symptoms during radiotherapy for prostate cancer
- 2015
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 19:5, s. 523-528
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim of this study was to test the feasibility and acceptability of an Information and Communication Technology platform for assessing and managing patient reported symptoms during radiotherapy for prostate cancer.Methods: In cooperation with a health management company, using a patient experience co-design, we developed the platform operated by an interactive application for reporting and managing symptoms in real time. Nine patients diagnosed with prostate cancer and receiving radiotherapy were recruited from two university hospitals in Sweden. Evidence-based symptoms and related self-care advice specific to prostate cancer were implemented in the application based on a literature review and interviews with patients and health care professionals. In the test of the platform the patients reported symptoms, via a mobile phone, daily for two weeks and were afterwards interviewed about their experiences.Results: Overall, the patients found the symptom questionnaire and the self-care advice relevant and the application user friendly. The alert system was activated on several occasions when the symptoms were severe leading to a nurse contact and support so the patients felt safe and well cared for.Conclusions: The platform enabled increased patient involvement and facilitated symptom assessment and communication between the patient and the health care provider. The study's results support further development of the platform, as well as tests in full-scale studies and in other populations.
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| 22. |
- Sundberg, Kay
(författare)
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Influence of childhood cancer on adult life: Quality of life, health status, sexual function and sense of coherence among long-term survivors
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Treatment related health problems are widely acknowledged in the growing population of long-term survivors of childhood cancer. The overall aim was to investigate the influence of childhood cancer on quality of life and health in long-term survivors to increase the understanding for their needs for support in adulthood. The four studies used a cross-sectional design and were based on interview data and self-completed questionnaires. The survivor sample consisted of 246 ≥18 years old long-term survivors (>5 years beyond diagnosis), diagnosed at ages 0-18 during the period 1985-1999 in the greater Stockholm area. In Study I, consequences due to the cancer experience were investigated through telephone interviews based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting. In Study II-IV, a comparison group consisting of 296 persons randomly selected from the general population was included. Two standardized instruments were used assessing health status (Short Form Health Survey, SF-36), and coping capacity (Sense of Coherence, SOC), as well as a questionnaire evaluating sexual function and experience. The survivors described and rated quality of life and health status similar to the comparison group. Nearly one third of the survivors reported no negative impact on life due to the cancer experience, and half of the survivors described a positive view of life and self. The most frequently reported negative consequences include a variety of physical impairments and activity limitations. The survivors differed from the comparison group on one of eight health scales reflecting problems with daily activities owing to physical health. Male survivors reported sexual dysfunctions more often than men in the comparison group did. The sexual dysfunctions were associated with being single and diagnosed with central nervous system tumour. There were differences regarding sexual experience but not regarding sexual function among the women. There was no significant difference in the mean SOC score between the survivors and the comparison group. The 20% of the survivors who reported a current need for support also reported a significantly lower mean SOC score. A low SOC score and having received combined cancer treatment were strong predictors of having a need for support. The results reveal both positive and negative aspects of the disease and treatment. At the group level, the survivors reported few health problems and overall good quality of life. Sexual difficulties were not frequently reported by the survivors. The results indicate however, that childhood cancer had some impact on self-reported sexual function among men and in sexual experience among women. Overall, the survivors appear to have the resources needed to cope with stressful situations in life to the same degree as people in general. However, a lower SOC was associated with having a need for support. Furthermore, the findings show that the influence of childhood cancer varies between different subgroups of survivors, why it is important to identify problems and needs for each individual. Understanding how long-term survivors of childhood cancer perceive adult life is important to the practice of nursing because it will offer the possibility to provide guidance and support for patients and their families during and after treatment.
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| 23. |
- Sundberg, Kay K., et al.
(författare)
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Long-term survivors of childhood cancer report quality of life and health status in parity with a comparison group
- 2010
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Ingår i: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 19, s. 78-78
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: There is a need for more knowledge about how survivors of childhood cancer perceive their lives and what influence current health status has on their quality of life. The purpose was to describe this among a group of long-term survivors and among a comparison group. PROCEDURE: Telephone interviews were performed with a cohort of 246 long-term survivors and 296 randomly selected from the general population using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). The participants nominated the areas they considered to be most important in life and rated the current status of each area on a seven-point category scale. An overall individual index score was calculated as a measure of quality of life. Self-reported health status was assessed using the Short Form Health Survey (SF-36). RESULTS: Long-term survivors rated their overall quality of life and self-reported health status almost in parity with the comparison group. In both groups, family life, relations to other people, work and career, interests and leisure activities were the areas most frequently reported to influence quality of life. The survivors only differed from the comparison group on one of eight SF-36 scales reflecting problems with daily activities owing to physical health. CONCLUSIONS: Health status was not shown to have a major impact on overall quality of life, indicating that health and quality of life should be evaluated distinctively as different constructs. This should be taken in consideration in clinical care of children with childhood cancer and long-term survivors.
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| 24. |
- Sundberg, Kay K., et al.
(författare)
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Self-reported quality of life in long-term survivors of childhood lymphoblastic malignancy treated with hematopoietic stem cell transplantation versus conventional therapy
- 2013
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Ingår i: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 60:8, s. 1382-1387
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Tidskriftsartikel (refereegranskat)abstract
- Background Chronic health conditions are known to be both abundant and severe after pediatric hematopoietic stem cell transplantation (SCT). The present objective was to investigate the impact of disease and treatment on individual QoL and health-related quality of life (HRQoL) in long-term survivors of childhood lymphoblastic malignancy treated with conventional therapy versus SCT. Procedure Survivors of lymphoblastic malignancy treated with (n=18) or without (n=52) SCT were recruited a median follow-up time of 18 and 14 years, respectively. The indication for SCT was relapsed disease in 17 of 18 cases. Autologous stem cells were used in 15 cases. Total body irradiation (TBI) was included in the conditioning regimen for all SCT patients. A cross-sectional study was conducted using two validated instruments: SEIQoL-DW (individual QoL) and SF-36 (HRQoL). Content analysis was used to analyze SEIQoL-DW and an overall QoL index score was calculated. Two multiple linear regression analyses were performed to detect factors influencing outcomes. Results Poorer ratings of overall QoL and more negative consequences related to physical dysfunctions were shown in the SCT group. The findings indicate that being unemployed or on sick leave are associated with a decline in HRQoL and individual QoL rather than SCT, cranial radiation therapy, present age, or sex. Conclusion In this small sample of long-term survivors of SCT, QoL seems reasonably good and similar to that of those having received conventional therapy. However, managing an employment must be acknowledged as an important part of life that has a great impact on QoL.
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| 25. |
- Sundberg, Kay K., et al.
(författare)
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Sense of coherence and need for support among long-term survivors of childhood cancer
- 2012
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 35:4, s. E43-E49
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The concept of sense of coherence (SOC) may be applied to explain individuals' resources for dealing with the stressors confronted in daily life. Little is known about what impact cancer in childhood may have on the development of SOC.OBJECTIVE: The objectives of this study were to compare SOC between long-term survivors of childhood cancer and a comparison group and to explore the need for current support among the survivors and the association between need for support and SOC.METHODS: Data were collected from 224 long-term survivors aged 18 to 37 years using the 13-item SOC scale and interviews. A matched comparison group (n = 283) randomly selected from the general population was included.RESULTS: There was no significant difference in the mean SOC score between the survivors and the comparison group. Twenty percent of the survivors reported a need for support, a need significantly predicted by a low SOC, as well as surgery and/or radiation treatment often in combination with chemotherapy.CONCLUSIONS: Long-term survivors of childhood cancer seem to have resources to cope with stressful situations in life to the same degree as people in general. Survivors with fewer resources to cope and those having received a more intense treatment were more likely to be in need of support.IMPLICATIONS FOR PRACTICE: The concept of SOC in nursing practice may be helpful to identify and discuss an individual's resources and impediments to health to better understand the need for support among survivors of childhood cancer.
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| 26. |
- Sundberg, Kay K., et al.
(författare)
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Sexual function and experience among long-term survivors of childhood cancer
- 2011
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Ingår i: European Journal of Cancer. - : Elsevier BV. - 0959-8049 .- 1879-0852. ; 47:3, s. 397-403
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The objective was to compare sexual function, sexual experience and quality of partner relationship by gender in a cohort of long-term survivors of childhood cancer with a sample from the general population. METHODS: A 30-item self-reported postal questionnaire was completed by a cohort of 224 (64%) long-term survivors of childhood cancer and 283 (51%) randomly selected persons from the general population. RESULTS: Male survivors more often reported periods of low sexual interest (p=0.019), more frequently reported low sexual satisfaction (p=0.015), less frequently reported feeling sexually attractive (p=0.020) and reported a lower total number of sexual partners (p=0.031) than males in the comparison group did. Males diagnosed with a central nervous system (CNS) tumour more frequently reported sexual arousal problems (p=0.003), low sexual satisfaction (p=0.021) and total number of sexual partners (p=0.012) than did males with other diagnoses. There were no statistically significant differences regarding sexual function between the female survivors and the females in the comparison group. CONCLUSION: : The results indicate that cancer disease and treatment have more impact on sexual function of male survivors than on the sexual function of female survivors. Amongst the survivors, males diagnosed with CNS tumours were shown to be the most vulnerable group. Assessment of sexual function is recommended to be included in regular follow-ups after childhood cancer.
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| 27. |
- Sundberg, Kay, et al.
(författare)
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Positive and negative consequences of childhood cancer influencing the lives of young adults
- 2009
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 13:3, s. 164-170
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to describe how young adults who have survived childhood cancer consider their present life to be influenced by the cancer experience. A cohort of 246 long-term survivors were approached a median of 16 years after diagnosis. Semi-structured telephone interviews were conducted based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Interviews were analysed using content analyses. When asked if cancer negatively or positively currently affected their lives, 68% reported at least one negative consequence and 53% at least one positive consequence. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities; positive consequences describe a more positive view of life and of self. Women more often than men reported negative psychological impact, a changed body appearance and positive interaction with others. CNS tumours and combined treatment were somewhat associated to a higher extent of negative consequences. Overall, the results indicate that long-term survivors of childhood cancer are getting along quite well despite shortcomings.
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| 28. |
- Tikkanen, Viivi, et al.
(författare)
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Care relationship and interaction between patients and ambulance clinicians : A qualitative meta‐synthesis from a person‐centred perspective
- 2023
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Ingår i: Scandinavian Journal of Caring Sciences. - 0283-9318 .- 1471-6712.
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundAmbulance care is characterised by disaster medicine, traumatology and care for acute illnesses and accidents. The focus of ambulance care is clearly on medical care, whereas interpersonal interaction between patients and ambulance clinicians appears less prioritised. A patient within ambulance care needs to be listened to, be taken seriously, be treated with empathy and be seen as a unique person. These are fundamental to delivering Person-centred care.AimThe purpose is to describe how the care relationship and interaction between patients and ambulance clinicians in prehospital emergency care are described in the literature and how they can be interpreted from a person-centred perspective.Data Sources and Review MethodsA qualitative meta-synthesis was used. Data collection was carried out with PubMed, CINAHL Plus and Web of Science in September–October 2022 and in August–September 2023. The first article searching applied a timeline 1990–2022 and the second applied a timeline 2022–2023. A total of 13 studies employing a qualitative approach were evaluated and included in the interpretive analysis.ResultsThree themes were identified: A good care relationship, Decision-making and Hindrances to practising person-centred care in ambulance care. Trust, good communication and respect for patients' dignity were the most important parts of the good care relationship between patients and ambulance clinicians. Decision-making regarding the examination of patients, medical treatment and transport to the receiving care unit was one of the tasks that ambulance clinicians do independently but in cooperation with patients and family members. Person-centred care within ambulance care may be hindered due to environmental factors, attitudes and behaviour of ambulance clinicians and patient-related factors.ConclusionMany ambulance clinicians have already adopted Person-centred care, but several factors can hinder Person-centred care in interactions with patients. Although the results build on a limited number of studies, they indicate that person-centred care needs to be further developed and studied for high-quality ambulance care.
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| 29. |
- Wennerberg, Camilla
(författare)
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Support for patients and the role of eHealth in rehabilitation after radical prostatectomy
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Patients undergoing radical prostatectomy for prostate cancer often experience urinary incontinence and sexual dysfunction posttreatment. Active self-care can reduce this burden. However, support maybe needed to maintain motivation during the long rehabilitation. eHealth has the potential to provide such support.Aim: To investigate the effects of eHealth support and describe patients'experiences of support in self-care during the rehabilitation after radical prostatectomy.Method: The Medical Research Council’s framework for complex interventions governed the overall design of this thesis. In Study I, patients’ experiences of the usability of a new eHealth support, the electronic Patient Activation in Treatment at Home (ePATH), was described using individual interviews and deductive content analysis. The effects of ePATH on symptoms and activation were evaluated through a multicenter longitudinal randomized controlled trial (II, III). Patients planned for radical prostatectomy at three sites were eligible for inclusion. The intervention group had access to ePATH during one year after surgery. Questionnaires at five timepoints were analyzed with linear mixed models and generalized estimation equations. Study IV described patients’ experiences of support for managing self-care through individual interviews and inductive content analysis.Results: Study I covered the usability of ePATH as to managing the technology, turning input into output, and how the eHealth support assisted in task performance. The randomized controlled trial showed no significant differences between groups regarding urinary incontinence, sexual function, physical activity, pelvic floor exercises (II), or patient activation (III). In the intervention group, 64% used ePATH. Initial patient activation and depression significantly influenced patient activation over the course of the rehabilitation year. In Study IV, patients described a progression in self-care management, where their abilities grew through interconnected phases.Conclusion: The needs for support differ during a patient's journey through prostate cancer rehabilitation. This places demands on the support and underscores the need for accessibility, individual adaptation, and continuity. Future research should focus on adjustable aids for patients in long-term rehabilitation, integrating multiple aspects, to enable tailoring of the support.
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