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...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2021-11-01
|
| Series: | Journal of Clinical Medicine |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2077-0383/10/22/5334 |
| _version_ | 1797509884218966016 |
|---|---|
| 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 |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-03-10T05:24:03Z |
| format | Article |
| id | doaj.art-c6df0fe883c7470f833b13f8b8254c34 |
| institution | Directory Open Access Journal |
| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-03-10T05:24:03Z |
| publishDate | 2021-11-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-c6df0fe883c7470f833b13f8b8254c342023-11-22T23:49:51ZengMDPI AGJournal of Clinical Medicine2077-03832021-11-011022533410.3390/jcm10225334Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied GroupIlse van Eck0Dide den Hollander1Emma Lidington2Leopold Hentschel3Martin Eichler4Samer Salah5Susanne Singer6Monica Pinto7Lena Fauske8Marco Fiore9Ioanna Nixon10Anastasia Constantinidou11Ingrid M. E. Desar12Johannes J. Bonenkamp13Winan J. van Houdt14Milou J. P. Reuvers15Rick L. M. Haas16Øyvind S. Bruland17Bernd Kasper18Winette T. A. van der Graaf19Olga Husson20Department of Medical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsDepartment of Medical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsThe Royal Marsden NHS Foundation Trust, London SW3 6JJ, UKNational Center for Tumor Diseases (NCT/UCC), University Hospital Carl Gustav Carus, Technical University Dresden, 01307 Dresden, GermanyNational Center for Tumor Diseases (NCT/UCC), University Hospital Carl Gustav Carus, Technical University Dresden, 01307 Dresden, GermanyDepartment of Medical Oncology, King Hussein Cancer Center, Amman 11941, JordanInstitute of Medical Biostatistics, Epidemiology and Informatics, University Medical Centre Mainz, 55131 Mainz, GermanyRehabilitation Unit, Department of Supportive Care, Instituto Nazionale Tumori-IRCCS-Fondazione G. Pascale, 80131 Naples, ItalyDepartment of Oncology, The Norwegian Radium Hospital, Oslo University Hospital, 0379 Oslo, NorwayDepartment of Surgery, Fondazione IRCCS Istituto Nazionale dei Tumori, 20133 Milan, ItalyDepartment of Clinical Oncology, Beatson West of Scotland Cancer Centre, Glasgow G12 0YN, UKMedical School University of Cyprus, Bank of Cyprus Oncology Centre, 1678 Nicosia, CyprusDepartment of Medical Oncology, Radboud University Medical Center, 6525 GA Nijmegen, The NetherlandsDepartment of Surgical Oncology, Radboud University Medical Center, 6525 GA Nijmegen, The NetherlandsDepartment of Surgical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, 1066 CX Amsterdam, The NetherlandsDepartment of Medical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsDepartment of Radiotherapy, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, 1066 CX Amsterdam, The NetherlandsDepartment of Oncology, The Norwegian Radium Hospital, Oslo University Hospital, 0379 Oslo, NorwaySarcoma Unit, Mannheim University Medical Center, University of Heidelberg, 68167 Mannheim, GermanyDepartment of Medical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsDepartment of Medical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsThoracic 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.https://www.mdpi.com/2077-0383/10/22/5334breast sarcomathoracic sarcomachest sarcomahealth-related quality of lifepatient-reported outcomes |
| spellingShingle | 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 Journal of Clinical Medicine breast sarcoma thoracic sarcoma chest sarcoma health-related quality of life patient-reported outcomes |
| title | 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_short | 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 |
| topic | breast sarcoma thoracic sarcoma chest sarcoma health-related quality of life patient-reported outcomes |
| url | https://www.mdpi.com/2077-0383/10/22/5334 |
| 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 |