Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group

Abstract

Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm height were specific physical issues for breast sarcoma patients, whereas respiratory problems were only mentioned by thoracic sarcoma patients. Body image issues, changes in mood, fear of recurrence, and living with uncertainty were important mental health issues for both subgroups. Social issues in both groups included challenges in work and relationships, financial difficulties, loss of independence, and limitations in social activities. The identified physical, mental, and social health challenges can significantly impact thoracic and breast sarcoma patients’ HRQoL. Results of this qualitative study will guide personalised supportive care for breast and thoracic sarcoma patients and help in determining the best possible HRQoL measurement strategy for sarcoma patients with different primary sarcoma locations.

Distress in soft‐tissue sarcoma and gastrointestinal stromal tumours patients—Results of a German multicentre observational study (PROSa)

“…In addition, changes in personality such as being aggressive and grumpy, more emotionally sensitive and less self-confident were described. 34 Disease course and disease development are playing an important role on emotional distress in sarcoma patients. We observed that distress appears to be particularly high in the first months of the disease.…”

“…Patients reported fear and anxiety about disease progression or recurrence, were living with uncertainty, experienced changes in mood and negative emotions due to their disease and treatment, and felt angry, sad, tense, down, worried, and depressed. In addition, changes in personality such as being aggressive and grumpy, more emotionally sensitive and less self‐confident were described 34 …”

The psychological impact of sarcoma on affected patients

“…Variables such as gender, age, other demographic variables, sarcoma type, surgical procedure, site of cancer, or phase of the disease may also influence QoL and lead to different levels of impairment in sarcoma patients 35,47–50 . The symptoms most reported as disabling were pain 2,39,43,51,52 and fatigue 2,36,43,52 …”

“…46 Variables such as gender, age, other demographic variables, sarcoma type, surgical procedure, site of cancer, or phase of the disease may also influence QoL and lead to different levels of impairment in sarcoma patients. 35,[47][48][49][50] The symptoms most reported as disabling were pain 2,39,43,51,52 and fatigue. 2,36,43,52 Survivors of skin sarcomas had the highest scores on global health status, physical functioning, and social functioning; survivors with sarcoma of the axial skeleton reported impairment on all functioning scales except for emotional and cognitive functioning and had the highest scores on the symptom scales except for nausea/vomiting, dyspnea, diarrhea, and financial impact.…”