Patient experiences and the influence on health literacy and self-care using mHealth to manage symptoms during radiotherapy for prostate cancer

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 personcentered 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.