On the road to improved outcomes by capturing leiomyosarcoma patients' views.
Robin L JonesPublished in: Future oncology (London, England) (2022)
An international collaborative project set up as a 'priority setting partnership' used a questionnaire to capture the views of patients, carers and clinicians about the sarcoma research agenda. Responses from 25 patients with leiomyosarcoma (LMS) in eight countries provided useful insight from the patient's perspective. Unmet needs identified by patients were in the areas of: LMS-specific trial design; exploring new therapeutic avenues; avoiding morcellation; exploring the immune system in LMS; investigating circulating tumor DNA; implementing molecular characterization of LMS; conducting basic research and a translational pipeline; evaluating imaging modalities; improving early diagnosis; identifying patient-reported outcomes; improving communication, information and support; and addressing survivorship and end-of-life care. Each of the unmet needs is described in more detail.
Keyphrases
- patient reported outcomes
- end stage renal disease
- newly diagnosed
- circulating tumor
- ejection fraction
- chronic kidney disease
- randomized controlled trial
- healthcare
- metabolic syndrome
- high resolution
- adipose tissue
- patient reported
- single molecule
- mass spectrometry
- open label
- photodynamic therapy
- skeletal muscle
- health information
- social media
- insulin resistance
- phase ii
- double blind