Exploring the Patient Perspective of Bone Sarcoma Survivors Who Have Undergone Particle Radiotherapy Abroad

Abstract

Background/Aim: Sarcoma patients' experiences of their health-related quality of life and late effects following particle therapy are sparse. Such knowledge is essential to optimize treatment compliance and follow-up care related to this rapidly developing, but still centralized treatment modality. Patients and Methods: This qualitative study has an explorative design and applies a phenomenological and hermeneutical approach based on semi-structured interviews with 12 bone sarcoma patients who had undergone particle therapy abroad. The data were interpreted using thematic analysis. Results: Several of the participants called for more information about how the treatment would be carried out, its acute side effects and late complications. Most participants had positive experiences from the treatment and their stay abroad, but several struggled with late effects and other challenges. Themes that emerged from the analysis were "importance of being prepared", "treatment and stay abroad", "basically healthy, but with health problems and challenges". Conclusion: Oncologists who inform and refer patients to particle therapy abroad must have sufficient experience of this treatment modality, prognoses, acute side effects, and late complications. Findings derived from this study may improve treatment preparation and compliance, enhance understanding of individual patient challenges to reduce stress and worry, and lead to better follow-up care and consequently quality of life of this selected group of bone sarcoma patients.Sarcoma survivors frequently struggle with late effects of treatment (1-4). The literature is sparse on their experiences, their health-related quality of life and late effects following particle therapy (5). Only one quantitative article on sarcoma patients was identified in which Srivastava et al. (6) studied chordoma and chondrosarcoma patients and concluded that their quality of life was not adversely affected during treatment, which allowed them to enjoy a normal life despite the lengthy treatment. No qualitative studies involving patients' own narratives have been found for these diagnostic groups of bone sarcomas. However, limited qualitative research has been published on the perspectives of patients treated with protons for brain cancer (7, 8), and relatives' perspectives on proton treatment given to pediatric cancer patients (9, 10). Living in a hotel, often alone, during treatment has been reported as an additional challenge by patients with primary brain tumors being treated with proton therapy far from home (8). Patients experienced an ongoing process in which they made several adjustments to cope, enhance their well-being, and manage the altered social context (8). Furthermore, concerns about diagnosis, treatment, and symptoms, in addition to spending time away from home, represent a significant additional burden for both patients and their family members (10).Particle-beam therapy is of increasing clinical use primarily due to its physical characteristics with improved dose distributions, an...

Experiences of fear of recurrence in patients with sarcoma

“…Although the psychological impacts were a significant negative consequence for patients treated with osteosarcoma, only three of eight participants specifically mentioned FCR. 18 However, five of seven patients in a study with soft tissue sarcoma noted that FCR was constant, debilitating, and impeded how they lived their lives. 19 The sarcoma population is distinct in that recurrence rates are higher than most other solid cancers, 14 and therefore, the prevalence of FCR could be higher based on this clinical reality.…”

“…16,17 Patient's experience of FCR has not been explored explicitly in previous qualitative studies in sarcoma, but in Reissman's personal narrative of living with sarcoma, she noted “fear of recurrence is a constant companion.” Although the psychological impacts were a significant negative consequence for patients treated with osteosarcoma, only three of eight participants specifically mentioned FCR. 18 However, five of seven patients in a study with soft tissue sarcoma noted that FCR was constant, debilitating, and impeded how they lived their lives. 19…”

NEK6 Promotes the Progression of Osteosarcoma Through Activating STAT3 Signaling Pathway by Down-Regulation of miR-26a-5p

“… 7 However, in most cases of osteosarcoma, radiotherapy is limited and its efficacy and indications are limited. 8 Due to surgical excision, combined chemotherapy and targeted radiotherapy, the 5-year survival rate of patients without metastasis can be about 60% to 70%. 9 However, metastasis and recurrence often result in a poor prognosis, so the 5-year survival rate for patients with metastatic or recurrent osteosarcoma is only 10% to 20%.…”