Abel Salazar Institute of Biomedical Sciences, University of Porto -(ICBAS-UP), Porto, Portugal; Portuguese Oncology Institute Francisco Gentil of Porto (IPO- Porto), Porto, Portugal.
Escola Superior de Enfermagem do Porto (Nursing School of Porto), Porto, Portugal; CINTESIS- Center for Health Technology and Services Research (NursID: Innovation and Development in Nursing), Porto, Portugal.
Eur J Oncol Nurs. 2021 Feb;50:101897. doi: 10.1016/j.ejon.2021.101897. Epub 2021 Jan 12.
Sarcoma is a heterogeneous group of tumours, usually affecting young patients and related to both endogenous and exogenous risk factors. The importance of obtaining the patient's perspective of the illness experience is imperative. Patient-reported outcomes (PROs) are the outcomes that come directly from the patient. They include symptoms, functional health, well-being, quality of life, psychological issues, among other indicators reported by the patients. The objective of this scoping review was to map the PROs in sarcoma patients and how they are measured.
The review process was guided by the Joanna Briggs Institute (JBI) checklist for scoping reviews.
The search identified 116 potentially relevant studies, with 27 articles meeting the inclusion criteria. The most common PRO evaluated in the selected studies were health-related quality of life (HRQoL), followed by functional outcome, aspects of mental health, and specific symptoms. Generic HRQoL questionnaires were widely used. Quantitative studies usually applied more than one type of Patient-Reported Outcome Measures (PROMs) to measure different PROs.
PROs should be carefully analysed to better understand the sarcoma patient's needs. The PROMs used in the selected studies about sarcoma were not specific to sarcoma, therefore, to better reflect on the perceptions of sarcoma patients, a different new and specific measurement strategy should be considered.
肉瘤是一组异质性肿瘤，通常影响年轻患者，并与内源性和外源性危险因素有关。了解患者对疾病体验的看法至关重要。患者报告的结果（PROs）是直接来自患者的结果。它们包括患者报告的症状、功能健康、幸福感、生活质量、心理问题等指标。本综述的目的是绘制肉瘤患者的 PRO 并描述其测量方法。
综述过程遵循乔安娜·布里格斯研究所（JBI）的综述清单进行。
搜索共确定了 116 篇潜在相关研究，其中 27 篇文章符合纳入标准。在选定的研究中，评估最多的 PRO 是健康相关生活质量（HRQoL），其次是功能结果、心理健康方面和特定症状。通用 HRQoL 问卷被广泛使用。定量研究通常使用不止一种类型的患者报告结局测量工具（PROMs）来测量不同的 PROs。
应仔细分析 PROs，以更好地了解肉瘤患者的需求。选定的关于肉瘤的研究中使用的 PROMs 不是专门针对肉瘤的，因此，为了更好地反映肉瘤患者的认知，应考虑采用一种新的、专门的测量策略。
