Symptoms and need for individualised support during the first year after primary treatment for breast cancer-A qualitative study.

BACKGROUND: The survival rate among patients with breast cancer is high. It is well described that after primary treatment patients may experience symptoms and concerns but the needs and resources during the first year to manage everyday life are not well described. AIM: To describe experiences of symptom distress, needs and support during the first year after primary treatment for breast cancer from the perspectives of patients and healthcare professionals. DESIGN: Qualitative descriptive. METHODS: Data collection through individual interviews with patients (n = 17) and a focus group interview with healthcare professionals (n = 7). Data was analysed using thematic analysis and resulted in three themes. RESULTS: The first theme, 'Struggling with symptoms and changes in everyday life' shows how symptoms and concerns interfered with the everyday life of patients and in some situations even impeded them. Patients try to adapt to their new situation by creating new routines and managing symptoms through self-care. The second theme, 'Adaption in a period of uncertainty' describes thoughts about cancer recurrence and doubts about continuing with the endocrine therapy if symptoms prolong. In the third theme, 'Support and need for individualized follow-up care' healthcare professionals described that they provide support by being available and by giving both verbal and written information. Patients expressed that the information could be too general and voiced a need for more individually tailored support. CONCLUSION: During the first year after primary treatment, patients with breast cancer describe how they try to manage by themselves, but express both unmet needs and a wish for extended and more individually tailored support. The healthcare professionals recognised that patients lack a structured plan for the first year and the need for continued support. This stresses a need for development of care models with special consideration towards individualised support after breast cancer treatment. NO PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public involvement in the design or conduct of the study. The interview study was not considered to benefit from involving patients or healthcare professionals when designing the interview guides as they were developed through literature and previous research of patients treated for breast cancer.

Care relationship and interaction between patients and ambulance clinicians: A qualitative meta-synthesis from a person-centred perspective.

BACKGROUND: Ambulance 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. AIM: The 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 METHODS: A 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. RESULTS: Three 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. CONCLUSION: Many 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.

Patients' Individualized Care Perceptions and Health Literacy Using an Interactive App During Breast and Prostate Cancer Treatment: Two Parallel Randomized Controlled Trials.

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.

Men's experiences of receiving a prostate cancer diagnosis after opportunistic screening-A qualitative descriptive secondary analysis.

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.

User experience of self-reported computerized medical history taking for acute chest pain: The Clinical Expert Operating System Chest Pain Danderyd Study.

BACKGROUND AND OBJECTIVE: Chest pain is one of the most common complaints in emergency departments (EDs). Self-reported computerized history taking (CHT) programmes can be used for interpretation of the clinical significance of medical information coming directly from patients. The adoption of CHT in clinical practice depends on reactions and attitudes to the technology from patients and their belief that the technology will have benefits for their medical care. The study objective was to explore the user experience of the self-reported CHT programme Clinical Expert Operating System (CLEOS) in the setting of patients visiting an ED for acute chest pain. METHODS: This qualitative interview study is part of the ongoing CLEOS-Chest Pain Danderyd Study. A subset (n = 84) of the larger sample who had taken part in self-reported history taking during waiting times at the ED were contacted by telephone and n = 54 (64%) accepted participation. An interview guide with open-ended questions was used and the text was analysed using directed content analysis. RESULTS: The patients' experiences of the CLEOS programme were overall positive although some perceived it as extensive. The programme was well accepted and despite the busy environment, patients were highly motivated and deemed it helpful to make a diagnosis. Six categories of user experience emerged: The clinical context, The individual context, Time aspect, Acceptability of the programme, Usability of the programme and Perceptions of usefulness in a clinical setting. CONCLUSIONS: The programme was well accepted by most patients in the stressful environment at ED although some found it difficult to answer all the questions. Adjustments to the extent of an interview to better suit the context of the clinical use should be a future development of the programme. The findings suggest that CHT programmes can be integrated as a standard process for collecting self-reported medical history data in the ED setting.

The sense of coherence scale in a clinical nursing perspective: A scoping review.

BACKGROUND: The concept of sense of coherence explains a person's resources to maintain health during times of considerable strain and is suggested to be applicable in nursing. A summary of how it has been applied and adapted in clinical nursing is warranted for further conceptual development and research. OBJECTIVE: The scoping review aimed to explore how the sense of coherence scale has been used from a clinical nursing research perspective. METHOD: Published articles (N = 2812) through December 2018 were identified in the PubMed, Cinahl and PsychInfo databases. A total of 298 articles were included in the review. A five-stage process was used to extract data based on pre-determined selection criteria. Summative content analysis was used for the categorisation of the data. The PRISMA-ScR checklist was chosen. RESULTS: A majority of the articles were published within the Nordic countries and the short version SOC-13 was the most frequently used scale. Most studies stated the significant relationship of a higher sense of coherence and higher emotional and psychosocial well-being, quality of life, and well-being irrespective of condition. Other articles proposed identifying patients' degree of sense of coherence either to individualise care or to plan an intervention to strengthen sense of coherence. CONCLUSIONS: The sense of coherence scale has been widely used within nursing and identified as an important factor to individualise care. Future research should focus on rigorous intervention studies to determine if recognising patients' degree of sense of coherence in clinical nursing enables tailored care for patients when dealing with a disease-related condition. More evidence is needed when seeking to improve sense of coherence. RELEVANCE TO CLINICAL PRACTICE: These results show an expansion of the concept of sense of coherence and endorses its use in nursing care for identifying patients' needs in the process of presenting individualised care.

Correction: Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer: Mixed Methods Study.

[This corrects the article DOI: 10.2196/17058.].

Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer: Mixed Methods Study.

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.

Decreased symptom burden following surgery due to support from an interactive app for symptom management for patients with pancreatic and periampullary cancer.

Background: Patients with pancreatic and periampullary cancer have poor prognoses, experience multiple symptoms following surgery and sometimes lack knowledge of self-care activities. Consequently, it is vital to develop systems that support self-management, improvement of health-related quality of life and reduction of symptoms. Therefore, the aim was to evaluate the impact on health-related quality of life and self-care activity when using the Interaktor app following pancreaticoduodenectomy due to cancer. Material and Methods: Patients in the intervention group used Interaktor up to six months after surgery. They reported symptoms daily at home and received support for self-management by continuous access to written self-care advice and to their healthcare professionals. Descriptive data from the app were collected. Health-related quality of life and self-care activity were collected before surgery, and six weeks and six months after surgery. Comparisons between the intervention group (n = 26) and a historical control group (n = 33) were made. Decline/dropout rate was 37% in the intervention group and 10% in the control group. Results: Six weeks after surgery the intervention group rated significantly higher emotional functioning and less nausea/vomiting, pain, appetite loss, constipation, pancreatic pain, flatulence and worry about low weight. Twenty-five subscales/items showed non-statistical differences. Six months after surgery the intervention group rated significantly fewer hepatic symptoms, less worry about low weight, and higher self-care activity level. Thirty subscales/items showed non-statistical differences. The first four weeks, patients reported symptoms in a median 95% of the intended days, and for the rest of the period in median 83%. Conclusion: The use of an app for management of patient-reported outcomes reduces symptom burdens six weeks after pancreaticoduodenectomy due to cancer. Interaktor is well accepted for patients choosing to participate and appears to facilitate supportive care needs and timely symptom management for this patient group. Future studies should also include cost-benefits and objective measures.

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.

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).

Early detection and management of symptoms using an interactive smartphone application (Interaktor) during radiotherapy for prostate cancer.

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.

Sense of coherence as a mediator of health-related quality of life dimensions in patients with breast cancer: a longitudinal study with prospective design.

BACKGROUND: In our previous study, we found that the degree of sense of coherence (SOC) and baseline ratings of several dimensions of health-related quality of life (HRQoL) were the most important predictors of HRQoL changes 6 months after the pre-diagnosis period of breast cancer. To find a way to explain these findings, the aim of this study was to explore the mediating effect of the SOC between ratings of HRQoL dimensions before final diagnosis, and ratings of the same dimensions at the 6 months follow up, within a sample of women with breast cancer. METHODS: A longitudinal study with a prospective design at baseline (T1) and 6 months later (T2) was conducted on 162 women with breast cancer. To measure HRQoL dimensions three different questionnaires, the European Organization for Research and Treatment of Cancer QLQ-30, the SF-12 Health Survey version 2 and the Health Index were applied at T1 and T2 to cover both diagnostic-specific and generic dimensions. Measurement of the SOC as a mediator was done by the SOC-13 scale. RESULTS: Mediational analyses on eight significant pairs of HRQoL dimensions showed that the degree of SOC totally mediated variations of global quality of life (p < 0.001) as well as cognitive and social functioning (p <0.05) scores between T1 to T2. Changes in the scores of emotional functioning (p < 0.01), fatigue (p < 0.05), financial difficulties (p < 0.05), well-being (p < 0.001), and mental health component (p < 0.001) were partially mediated. The degree of SOC explained 16% to 45% of the variances in HRQoL dimensions at T2. CONCLUSIONS: The mediating pathway of the SOC in the context of this study appears to be the key to understanding how a higher sense of coherence as an inner resource may serve as a protective psychological factor in the adaptation process of the patients. Clinicians might consider coherence-oriented structure of the SOC and the connection between the SOC and HRQoL data in intervention plans from the first visit onwards. It may assist the identification of women who are at greater risk for maladaptation to the breast cancer trajectory.

Measurement properties of the 13-item sense of coherence scale using Rasch analysis.

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.

Preferences for Tailored Support - Patients' and Health Care Professionals' Experiences Regarding Symptoms and Self-Management Strategies During the First Year After Curatively Intended Prostate Cancer Treatment.

Purpose: There is an increase in the number of men undergoing screening for prostate cancer, and advancements in treatments, which implies current knowledge about symptoms and self-management. This study aims to explore experiences of symptom distress, and self-management strategies during the first year after curatively intended treatment for prostate cancer, as identified by patients and health care professionals. Methods: A qualitative design was used, including data triangulation from individual interviews with patients (n =17) and one focus group interview with healthcare professionals (n =5). Thematic analysis was used. Results: The two main themes were identified: living with the consequences of treatment and navigating a new situation. Living with the consequences of treatment illustrated how losing control of bodily functions such as bladder, bowel, and sexual functions interfered with daily life. A stigma around the disease was described, and a life living in an unfamiliar body challenged ideas of masculinity. The first months after treatment ended was a distressing period related to the abruption in frequent contact with healthcare providers, and concerns about the future. The second theme, navigating a new situation, illustrates that self-management strategies varied, due to individual factors as did the need for tailored information and support provided from healthcare professionals and family, which was highly valued. Information and support were described as complex topics and healthcare professionals emphasized the need for appropriate education for staff to provide proper support to men after ended treatment. Conclusion: Lingering symptoms and concerns were evident during the first year after treatment. Self-management strategies varied, and timely and tailored information and support during the first year were considered highly valued, important, and preferred by patients. Our results indicate that support should be offered immediately after curatively intended treatment.

Self-reported quality of life in long-term survivors of childhood lymphoblastic malignancy treated with hematopoietic stem cell transplantation versus conventional therapy.

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.

Patients' Experiences of Care With or Without the Support of an Interactive App During Neoadjuvant Chemotherapy for Breast Cancer: Interview Study.

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.

A pedagogical model to enhance nurses' ability to support patient learning: an educational design research study.

Objectives: To design, apply, evaluate, and analyse a pedagogical model to enhance nurses' ability to create pedagogical encounters to support patients' learning. Methods: The study relies on an educational design research approach. A pedagogical model based on learning theories was designed, applied, evaluated, and analysed in a specialist nursing programme in cancer care. All students (n=28) who attended the programme accepted to participate in the evaluation of the model. Their perception of the learning activities was evaluated in a questionnaire, and 16 (57%) students responded. The students' learning was assessed in written assignments, including all students. Descriptive statistics, content analysis and theoretical reasoning, were used to analyse data and interpret the usefulness and shortcomings of the model. Results: The most appreciated learning activities were to study learning theories, observe pedagogical encounters, act as a critical friend, and document one's own pedagogical encounters. The written assignments about observing and performing their own pedagogical encounters with patients showed students' increased awareness of how to support patients' learning. The clinical supervisors' lack of pedagogical knowledge inhibited the feedback on students' performances. Conclusions: The theoretical analysis of the evaluation identified strengths and needs for further development. The strengths tend to be the ongoing learning process created by learning activities supporting students to continuously study, experience, and apply their knowledge. Nurse supervisors and other stakeholders at the clinics are suggested to be involved in improving the design and require pedagogical competence. Further research should include observational and interview studies related to students' performance in pedagogical encounters.

Supporting health literacy using an interactive app for symptom management during radiotherapy for prostate cancer.

OBJECTIVE: Patients' ability to self-monitor symptoms and engage in self-care activities is dependent upon their level of health literacy. Health literacy and self-care ability was compared in men with prostate cancer undergoing radiotherapy that used an app for symptom management with a control group. METHODS: Included were an intervention group (n = 66), who used an app for symptom reporting and support for self-care, and a control group (n = 64). Outcomes were Functional Health Literacy, Communicative and Critical Health Literacy and Appraisal of Self-Care Agency (ASA-A). RESULTS: The intervention group had improved regarding "ability to select information needed from a variety of information sources" (p = .020), "ability to determine the information credible" (p = .041), and "being able to plan and decide what to do to improve health" (p = .004). No inter-group difference was found for ASA-A. CONCLUSIONS: With the support of an app for reporting and managing symptoms, important advanced health literacy skills of selecting, determining, and judging information credible may improve. PRACTICE IMPLICATIONS: Patients undergoing treatment for prostate cancer may benefit from an individualized approach, such as an app, for communication with health care providers and as a source of health information to make decisions about their own health.

Long-term survivors of childhood cancer report quality of life and health status in parity with a comparison group.

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.

Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study.

BACKGROUND: Pancreatic and periampullary cancers are rare but have high mortality rates. The only hope for cure is surgical removal of the tumor. Following pancreatic surgery, the patients have a great deal of responsibility for managing their symptoms. Patients report a lack of sufficient knowledge of self-care and unmet supportive care needs. This necessitates a health care system responsive to these needs and health care professionals who pay close attention to symptoms. Person-centered care is widely encouraged and means a shift from a model in which the patient is the passive object of care to a model involving the patient as an active participant in their own care. To address the challenges in care following pancreatic cancer surgery, an interactive app (Interaktor) was developed in which patients regularly report symptoms and receive support for self-care. The app has been shown to reduce patients' symptom burden and to increase their self-care activity levels following pancreaticoduodenectomy due to cancer. OBJECTIVE: The aim of the study was to describe how patients used the Interaktor app following pancreaticoduodenectomy due to cancer and their experience with doing so. METHODS: A total of 115 patients were invited to use Interaktor for 6 months following pancreaticoduodenectomy. Of those, 35 declined, 8 dropped out, and 46 did not meet the inclusion criteria after surgery, leaving 26 patients for inclusion in the analysis. The patients were instructed to report symptoms daily through the app for up to 6 months following surgery. In case of alerting symptoms, they were contacted by their nurse. Data on reported symptoms, alerts, and viewed self-care advice were logged and analyzed with descriptive statistics. Also, the patients were interviewed about their experiences, and the data were analyzed using thematic analysis. RESULTS: The patients' median adherence to symptom reporting was 82%. Fatigue and pain were the most reported symptoms. Alerting symptoms were reported by 24 patients, and the most common alert was fever. There were variations in how many times the patients viewed the self-care advice (range 3-181 times). The most commonly viewed advice concerned pancreatic enzyme supplements. Through the interviews, the overarching theme was "Being seen as a person," with the following 3 sub-themes: "Getting your voice heard," "Having access to an extended arm of health care," and "Learning about own health." CONCLUSIONS: Interaktor proved to be well accepted. It made patients feel reassured at home and offered support for self-care. The app facilitated person-centered care by its multiple features targeting individual supportive care needs and enabled participation in their own care. This supports our recent studies showing that patients using the app had less symptom burden and higher self-care activity levels than patients receiving only standard care.