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Published on: July 28, 2020
Patient-Reported Outcomes in Sarcoma: A scoping review.
Ana Almeida1, Teresa Martins2, Lígia Lima2
1Abel Salazar Institute of Biomedical Sciences, University of Porto -(ICBAS-UP), Porto, Portugal; Portuguese Oncology Institute Francisco Gentil of Porto (IPO- Porto), Porto, Portugal.
Patient-reported outcomes (PROs) in sarcoma research primarily focus on quality of life and symptoms. Current measurement tools are often not sarcoma-specific, highlighting a need for tailored approaches to capture patient experiences effectively.
Area of Science:
- Oncology
- Patient-Reported Outcomes Research
- Health Services Research
Background:
- Sarcoma is a diverse cancer group affecting primarily young individuals, influenced by various risk factors.
- Understanding the patient's perspective on their illness experience is crucial for comprehensive care.
- Patient-reported outcomes (PROs) capture direct patient experiences, including symptoms, quality of life, and psychological well-being.
Purpose of the Study:
- To conduct a scoping review mapping the landscape of PROs utilized in sarcoma patient studies.
- To identify and categorize the methods used for measuring PROs in sarcoma patients.
Main Methods:
- A systematic scoping review methodology was employed.
- The review process adhered to the Joanna Briggs Institute (JBI) checklist for scoping reviews.
- A comprehensive literature search identified relevant studies for inclusion.
Main Results:
- Out of 116 initially identified studies, 27 met the inclusion criteria.
- Health-related quality of life (HRQoL) was the most frequently assessed PRO, followed by functional outcomes, mental health aspects, and specific symptoms.
- Generic HRQoL questionnaires were commonly used, and quantitative studies often employed multiple Patient-Reported Outcome Measures (PROMs).
Conclusions:
- Analysis of PROs is essential for understanding sarcoma patient needs.
- Existing PROMs used in sarcoma research lack specificity to the disease.
- Development of novel, sarcoma-specific measurement strategies is recommended to better capture patient perceptions.
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