The balancing act of living with symptoms. Patient-reported data and quality of care during and after treatment with proton beam therapy in patients with brain tumors

Sammanfattning: is thesis focuses on patients with primary brain tumors undergoing proton beam therapy (PBT) and the consequences of the treatment. Quality of care (QoC) in a recently established clinic in Sweden was also evaluated. Furthermore, this thesis describes the development of the first comprehensive, prospective health and care science research project assessing patient-reported data related to PBT. Study I - QoC in relation to health-related quality of life (HRQoL) was evaluated in patients with primary brain tumors given proton therapy. A need for quality improvement was identified for several aspects of care. More negative symptom experience during the treatment period led to greater perceived importance of specific support. Study II - Symptom clusters among patients with primary brain tumors given PBT were explored. ?ree clusters were identified: Mood, Reduced Appetite and Reduced Energy. Building knowledge about how these symptoms interact and are clustered can support healthcare professionals in more efficiently treating symp-toms during and after PBT. Study III - HRQoL, including acute side effects and associations between demographics and medical factors related to PBT, was investigated and compared with HRQoL related to conventional photon therapy (CRT). Global health/quality of life (QoL) deteriorated from baseline up to three months after treatment. ?e most pronounced symptom was fatigue. Study IV - Grounded theory (GT) was applied and The art of living with symptoms emerged as the core concept in this qualitative study. It encompassed three interconnected symptom management processes ex-pressed in the following concepts: Adapting to limited ability, Learning about oneself and Creating new rou-tines. ?ese concepts were summarized in a substantive theoretical model of symptom management. The studies underlying this thesis revealed that patients with primary brain tumors experienced increased symptoms during the treatment period, and that they decreased gradually up to three months after the end of treatment. Healthcare professionals must clarify patients’ needs for information and support related to symptoms and interventions and be aware that they change over time.