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.

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.

Nurses' Experiences Using an Interactive System to Assess and Manage Treatment-Related Symptoms of Patients With Pancreatic Cancer: Interview Study.

BACKGROUND: Treatment for pancreatic cancer entails symptom distress and a high burden of self-care. Patient-reported outcomes, collected with the support of mobile health (mHealth), have shown positive effects on symptom management, patient satisfaction, and quality of life for patients with cancer. For mHealth tools to become an integral part of clinical routine, experiences from health care professionals are needed. OBJECTIVE: The aim of this paper is to describe nurses' experiences of integrating an interactive system (Interaktor) for symptom assessment and management into daily practice, when caring for patients following pancreaticoduodenectomy and during chemotherapy treatment due to pancreatic cancer. METHODS: Patients reported symptoms via the Interaktor app daily for 6 months. In the event of alarming symptoms, an alert was triggered to the patient's nurse who then called the patient to offer advice and support. All nurses (n=8) who assessed patients were interviewed either individually or in a group. Transcribed interviews were analyzed using qualitative thematic analysis. RESULTS: mHealth can facilitate person-centered care by offering nurses a way to gain knowledge about patients and to build relationships. Further, obstacles to implementation could be seen due to a lack of structural prerequisites and uncertainty about multiple ways to interact with patients. CONCLUSIONS: The Interaktor system can provide person-centered care. However, to implement mHealth tools as a clinical routine, focus needs to be placed on creating the necessary organizational conditions.

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.

Development and Feasibility of an Interactive Smartphone App for Early Assessment and Management of Symptoms Following Pancreaticoduodenectomy.

BACKGROUND: Patients who have undergone pancreaticoduodenectomy because of pancreatic cancer experience distressing symptoms and unmet supportive care needs after discharge. To meet these needs, we have developed a mobile health app (Interaktor) for daily assessment of symptoms and access to self-care advice that includes a risk assessment model for alerts with real-time interactions with professionals. OBJECTIVE: The study aim was to develop and test a version of the Interaktor app adapted for patients who have undergone pancreaticoduodenectomy. METHODS: The app was developed and tested for feasibility in 6 patients during 4 weeks. One nurse monitored and responded to alerts. Logged data from the app were collected, and all participants were interviewed about their experiences. RESULTS: Adherence to reporting daily was 84%. Alerts were generated in 41% of the reports. The patients felt reassured and cared for and received support for symptom management. The app was easy to use, had relevant content, and had few technical problems, although suggestions for improvement were given. CONCLUSIONS: The daily reporting of symptoms and having access to a nurse in real time in the case of an alarming symptom seem to enhance symptom management and render a feeling of security in patients. Some modifications of the app are needed before use in a larger sample. IMPLICATIONS FOR PRACTICE: Daily reporting of symptoms after pancreaticoduodenectomy enhances symptom management, self-care, and participation without being a burden to patients, indicating that mobile health can be used in clinical practice by patients with poor prognosis who experience severe symptoms.

Symptoms and self-care following pancreaticoduodenectomy: Perspectives from patients and healthcare professionals - Foundation for an interactive ICT application.

PURPOSE: Poor 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. METHOD: Data 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. RESULTS: Common 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. CONCLUSIONS: The 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.