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Mapping methods and tools for measuring patient experience in oncology settings: a scoping review
Julia Charlotte Kowalska1,2, Dawid Storman3, Kamila Michalska4,5
1Doctoral School of Medical and Health Sciences, Jagiellonian University Medical College, Krakow, Poland. julia.kowalska@doctoral.uj.edu.pl.
Purpose:
Patient experience (PX) is crucial for evaluating healthcare quality in oncology, encompassing comprehensive interactions from diagnosis through survivorship. However, the field lacks consensus on PX measurement and its conceptualization. The aim of this scoping review was to systematically map methods and tools used to measure PX in original studies, while providing detailed characteristics of each tool.
Methods:
Guided by the Arksey and O'Malley framework, this review involved a systematic search across six databases up to May 2025.
Results:
Data from 109 original studies, identifying 43 unique tools, were extracted and synthesized narratively. Survey-based questionnaires predominated, with national cancer PX surveys being most frequently used (44%). Despite this, significant fragmentation was evident, with most tools used in limited studies (1-2). 63% of tools lacked explicit theoretical foundations, and psychometric reporting was imprecise. Consistently measured domains included information/communication, care coordination, and respect/dignity.
Conclusions:
The measurement of PX in oncology is diverse but inconsistent, marked by a lack of standardization, theoretical ambiguity, and insufficient psychometric validation. Therefore, it is highly challenging to transfer such results into impactful clinical interventions for patients. Addressing these gaps through theory-driven tool development, rigorous validation, and culturally appropriate adaptations, especially for cancer survivorship and diverse global contexts, is essential.
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