TY - JOUR
T1 - Health-related quality of life issues experienced by thoracic and breast sarcoma patients
T2 - a rare and understudied group
AU - van Eck, Ilse
AU - Den Hollander, Dide
AU - Lidington, Emma
AU - Hentschel, Leopold
AU - Eichler, Martin
AU - Salah, Samer
AU - Singer, Susanne
AU - Pinto, Monica
AU - Fauske, Lena
AU - Fiore, Marco
AU - Nixon, Ioanna
AU - Constantinidou, Anastasia
AU - Desar, Ingrid M.E.
AU - Bonenkamp, Johannes J.
AU - van Houdt, Winan J.
AU - Reuvers, Milou J.P.
AU - Haas, Rick L.M.
AU - Bruland, Øyvind S.
AU - Kasper, Bernd
AU - van der Graaf, Winette T.A.
AU - Husson, Olga
PY - 2021/11/16
Y1 - 2021/11/16
N2 - 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.
AB - 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.
KW - breast sarcoma
KW - chest sarcoma
KW - health-related quality of life
KW - patient-reported outcomes
KW - thoracic sarcoma
U2 - 10.3390/jcm10225334
DO - 10.3390/jcm10225334
M3 - Article
AN - SCOPUS:85119050942
SN - 2077-0383
VL - 10
JO - Journal of Clinical Medicine
JF - Journal of Clinical Medicine
IS - 22
M1 - 5334
ER -