Cargando…

Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System—Results from the SURVSARC Study

SIMPLE SUMMARY: Patients with rare cancers face obstacles including delays in diagnosis, inadequate treatments and limited scientific evidence to guide decision making. These obstacles may have a unique impact on their experience with the healthcare system and might be different at various ages. Som...

Descripción completa

Detalles Bibliográficos
Autores principales:	Drabbe, Cas, Grünhagen, Dirk J., Van Houdt, Winan J., Braam, Pètra M., Soomers, Vicky L. M. N., Van der Hage, Jos A., De Haan, Jacco J., Keymeulen, Kristien B. M. I., Husson, Olga, Van der Graaf, Winette T. A.
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	MDPI 2021
Materias:	Article
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7914609/ https://www.ncbi.nlm.nih.gov/pubmed/33567553 http://dx.doi.org/10.3390/cancers13040679

Ejemplares similares

Fear of Cancer Recurrence in Sarcoma Survivors: Results from the SURVSARC Study
por: Pellegrini, Ilaria, et al.
Publicado: (2022)

Unraveling the Heterogeneity of Sarcoma Survivors’ Health-Related Quality of Life Regarding Primary Sarcoma Location: Results from the SURVSARC Study
por: van Eck, Ilse, et al.
Publicado: (2020)

The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study
por: Soomers, Vicky L. M. N., et al.
Publicado: (2020)

The age-related impact of surviving sarcoma on health-related quality of life: data from the SURVSARC study
por: Drabbe, C., et al.
Publicado: (2021)

Desmoid is not a sarcoma; reply to Sachdev et al.
por: van der Graaf, Winette T.A., et al.
Publicado: (2023)

The sarcoma diagnostic interval: a systematic review on length, contributing factors and patient outcomes
por: Soomers, Vicky, et al.
Publicado: (2020)

Quality of life and experiences of sarcoma trajectories (the QUEST study): protocol for an international observational cohort study on diagnostic pathways of sarcoma patients
por: Soomers, Vicky, et al.
Publicado: (2020)

Liquid Biopsies in Sarcoma Clinical Practice: Where Do We Stand?
por: van der Laan, Pia, et al.
Publicado: (2021)

Management of Soft Tissue Sarcomas in Extremities: Variation in Treatment Recommendations and Surveillance According to Specialty and Continent
por: Acem, Ibtissam, et al.
Publicado: (2021)

Neoadjuvant Systemic Treatment of Primary Angiosarcoma
por: Heinhuis, Kimberley M., et al.
Publicado: (2020)

Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis
por: Schut, Anne-Rose W., et al.
Publicado: (2022)

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
por: Schut, Anne-Rose W., et al.
Publicado: (2022)

The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)—A Protocol for an International Cohort Study
por: Schut, Anne-Rose W., et al.
Publicado: (2021)

Gastrointestinal Stromal Tumours (GIST) in Young Adult (18–40 Years) Patients: A Report from the Dutch GIST Registry
por: IJzerman, Nikki S., et al.
Publicado: (2020)

Physical symptom burden in patients with desmoid‐type fibromatosis and its impact on health‐related quality of life and healthcare use
por: Schut, Anne‐Rose W., et al.
Publicado: (2023)

PropAngio study protocol: a neoadjuvant trial on the efficacy of propranolol monotherapy in cutaneous angiosarcoma—a proof of principle study
por: Heinhuis, Kimberley M, et al.
Publicado: (2020)

The Prolonged Diagnostic Pathway of Young Adults (Aged 25–39) with Cancer in the United Kingdom: Results from the Young Adult Cancer Patient Journey Study
por: Soomers, Victorien L. M. N., et al.
Publicado: (2021)

Metastatic Soft Tissue Sarcomas in Adolescents and Young Adults: A Specialist Center Experience
por: Younger, Eugenie, et al.
Publicado: (2020)

Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study
por: Timbergen, Milea J. M., et al.
Publicado: (2018)

The route to diagnosis of sarcoma patients: Results from an interview study in the Netherlands and the United Kingdom
por: Soomers, Vicky L. M. N., et al.
Publicado: (2020)

Desmoid fibromatosis through the patients’ eyes: time to change the focus and organisation of care?
por: Husson, Olga, et al.
Publicado: (2018)

Health-related Quality of Life of Patients With Non–Intra-abdominal Desmoid-Type Fibromatosis During Active Surveillance: Results of a Prospective Observational Study
por: Schut, Anne-Rose W., et al.
Publicado: (2023)

The Association of Metastasis Pattern and Management of Metastatic Disease with Oncological Outcomes in Patients with Malignant Peripheral Nerve Sheath Tumors: A Multicenter Cohort Study
por: Acem, Ibtissam, et al.
Publicado: (2021)

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview
por: Janssen, Silvie H. M., et al.
Publicado: (2021)

Assessing the Desmoid-Type Fibromatosis Patients' Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries
por: Timbergen, Milea J. M., et al.
Publicado: (2020)

Clinical Impact of Prospective Whole Genome Sequencing in Sarcoma Patients
por: Schipper, Luuk J., et al.
Publicado: (2022)

A Negative Body Image among Adolescent and Young Adult (AYA) Cancer Survivors: Results from the Population-Based SURVAYA Study
por: Saris, Laura M. H., et al.
Publicado: (2022)

A Nationwide Prospective Clinical Trial on Active Surveillance in Patients With Non-intraabdominal Desmoid-type Fibromatosis: The GRAFITI Trial
por: Schut, Anne-Rose W., et al.
Publicado: (2023)

Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs
por: Reuvers, Milou J. P., et al.
Publicado: (2023)

Towards an evidence-based model of fear of cancer recurrence for breast cancer survivors
por: Custers, José A. E., et al.
Publicado: (2016)

Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group
por: van Eck, Ilse, et al.
Publicado: (2021)

Health-related quality Of Life In patients with advanced Soft TIssue sarcomas treated with Chemotherapy (The HOLISTIC study): protocol for an international observational cohort study
por: Younger, Eugenie, et al.
Publicado: (2020)

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study
por: Vlooswijk, Carla, et al.
Publicado: (2022)

Incorporating the Patient Voice in Sarcoma Research: How Can We Assess Health-Related Quality of Life in This Heterogeneous Group of Patients? A Study Protocol
por: den Hollander, Dide, et al.
Publicado: (2020)

Isolated limb perfusion for unresectable extremity cutaneous squamous cell carcinoma; an effective limb saving strategy
por: Huis in ’t Veld, Eva A., et al.
Publicado: (2018)

Incidence, Survival, and Mortality Trends of Cancers Diagnosed in Adolescents and Young Adults (15–39 Years): A Population-Based Study in The Netherlands 1990–2016
por: van der Meer, Daniël J., et al.
Publicado: (2020)

Health-related quality of life of Adolescent and Young Adult Cancer Survivors before and during the COVID-19 pandemic: longitudinal improvements on social functioning and fatigue
por: Vlooswijk, Carla, et al.
Publicado: (2023)

Targeting Anaplastic Lymphoma Kinase (ALK) in Rhabdomyosarcoma (RMS) with the Second-Generation ALK Inhibitor Ceritinib
por: van Erp, Anke E. M., et al.
Publicado: (2017)

New Systemic Therapy Options for Advanced Sarcomas
por: van der Graaf, Winette T. A., et al.
Publicado: (2012)

Learning from long‐term adolescent and young adult (AYA) cancer survivors regarding their age‐specific care needs to improve current AYA care programs
por: Janssen, Silvie H. M., et al.
Publicado: (2023)

Cannot write session to /tmp/vufind_sessions/sess_m7qde8ome3hd0m84l1as4vlog4