Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group
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...
Guardado en:
| Autores principales: | , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Formato: | article |
| Lenguaje: | EN |
| Publicado: |
MDPI AG
2021
|
| Materias: | |
| Acceso en línea: | https://doaj.org/article/c6df0fe883c7470f833b13f8b8254c34 |
| Etiquetas: |
Agregar Etiqueta
Sin Etiquetas, Sea el primero en etiquetar este registro!
|
| id |
oai:doaj.org-article:c6df0fe883c7470f833b13f8b8254c34 |
|---|---|
| record_format |
dspace |
| spelling |
oai:doaj.org-article:c6df0fe883c7470f833b13f8b8254c342021-11-25T18:01:50ZHealth-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group10.3390/jcm102253342077-0383https://doaj.org/article/c6df0fe883c7470f833b13f8b8254c342021-11-01T00:00:00Zhttps://www.mdpi.com/2077-0383/10/22/5334https://doaj.org/toc/2077-0383Thoracic 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.Ilse van EckDide den HollanderEmma LidingtonLeopold HentschelMartin EichlerSamer SalahSusanne SingerMonica PintoLena FauskeMarco FioreIoanna NixonAnastasia ConstantinidouIngrid M. E. DesarJohannes J. BonenkampWinan J. van HoudtMilou J. P. ReuversRick L. M. HaasØyvind S. BrulandBernd KasperWinette T. A. van der GraafOlga HussonMDPI AGarticlebreast sarcomathoracic sarcomachest sarcomahealth-related quality of lifepatient-reported outcomesMedicineRENJournal of Clinical Medicine, Vol 10, Iss 5334, p 5334 (2021) |
| institution |
DOAJ |
| collection |
DOAJ |
| language |
EN |
| topic |
breast sarcoma thoracic sarcoma chest sarcoma health-related quality of life patient-reported outcomes Medicine R |
| spellingShingle |
breast sarcoma thoracic sarcoma chest sarcoma health-related quality of life patient-reported outcomes Medicine R Ilse van Eck Dide den Hollander Emma Lidington Leopold Hentschel Martin Eichler Samer Salah Susanne Singer Monica Pinto Lena Fauske Marco Fiore Ioanna Nixon Anastasia Constantinidou Ingrid M. E. Desar Johannes J. Bonenkamp Winan J. van Houdt Milou J. P. Reuvers Rick L. M. Haas Øyvind S. Bruland Bernd Kasper Winette T. A. van der Graaf Olga Husson Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group |
| description |
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. |
| format |
article |
| author |
Ilse van Eck Dide den Hollander Emma Lidington Leopold Hentschel Martin Eichler Samer Salah Susanne Singer Monica Pinto Lena Fauske Marco Fiore Ioanna Nixon Anastasia Constantinidou Ingrid M. E. Desar Johannes J. Bonenkamp Winan J. van Houdt Milou J. P. Reuvers Rick L. M. Haas Øyvind S. Bruland Bernd Kasper Winette T. A. van der Graaf Olga Husson |
| author_facet |
Ilse van Eck Dide den Hollander Emma Lidington Leopold Hentschel Martin Eichler Samer Salah Susanne Singer Monica Pinto Lena Fauske Marco Fiore Ioanna Nixon Anastasia Constantinidou Ingrid M. E. Desar Johannes J. Bonenkamp Winan J. van Houdt Milou J. P. Reuvers Rick L. M. Haas Øyvind S. Bruland Bernd Kasper Winette T. A. van der Graaf Olga Husson |
| author_sort |
Ilse van Eck |
| title |
Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group |
| title_short |
Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group |
| title_full |
Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group |
| title_fullStr |
Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group |
| title_full_unstemmed |
Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group |
| title_sort |
health-related quality of life issues experienced by thoracic and breast sarcoma patients: a rare and understudied group |
| publisher |
MDPI AG |
| publishDate |
2021 |
| url |
https://doaj.org/article/c6df0fe883c7470f833b13f8b8254c34 |
| work_keys_str_mv |
AT ilsevaneck healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT didedenhollander healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT emmalidington healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT leopoldhentschel healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT martineichler healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT samersalah healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT susannesinger healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT monicapinto healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT lenafauske healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT marcofiore healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT ioannanixon healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT anastasiaconstantinidou healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT ingridmedesar healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT johannesjbonenkamp healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT winanjvanhoudt healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT miloujpreuvers healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT ricklmhaas healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT øyvindsbruland healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT berndkasper healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT winettetavandergraaf healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup AT olgahusson healthrelatedqualityoflifeissuesexperiencedbythoracicandbreastsarcomapatientsarareandunderstudiedgroup |
| _version_ |
1718411706660552704 |