The complexity of assessing health-related quality of life among sarcoma patients
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RESPONSE
The complexity of assessing health‑related quality of life among sarcoma patients Olga Husson1,2,3 · Dide den Hollander1,4 · Winette T. A. van der Graaf1,4 Accepted: 12 June 2020 © Springer Nature Switzerland AG 2020
We read with great interest the original paper by Martins et al. ‘Development of a patient‑reported experience ques‑ tionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM)’ [1]. This article comprehensively described the development of a highly needed patient-reported out‑ come measure for sarcoma patients and covers physical, emotional, social, financial wellbeing and sexuality issues. More recently, increasing attention has been given to patient-reported outcomes (PROs), defined as ‘any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else,’ in order to evalu‑ ate treatment efficacy (www.fda.gov). PROs are assessed with PRO measures (PROMs), which can include a range of outcomes such as symptoms, functioning and health-related quality of life (HRQoL). HRQoL is the most widely used PRO and is a multidimensional concept that includes the patient’s perception of the impact of the disease and its treat‑ ment on physical, psychological and social functioning [2]. Existing HRQoL measures for sarcoma patients often focus on physical functioning only (e.g. Toronto Extrem‑ ity Salvage Score as measure of physical disability) and do not take into account the psychosocial impact sarcoma can have on a patient’s life. Most studies use a generic (SF-36) or cancer-specific HRQoL measure (e.g. EORTC QLQ-C30, FACT-G), which cover relevant issues but do not capture all of the unique experiences of sarcoma patients (e.g. difficulty * Olga Husson [email protected] 1
Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands
2
Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands
3
Division of Clinical Studies, Institute of Cancer Research, London, UK
4
Department of Medical Oncology, Radboud University Medical Centre, Nijmegen, The Netherlands
living with rare cancer), and thus lack content validity. Therefore, the purpose of the Martins et al. study was to develop a sarcoma-specific quality of life measure based on patient experience. In the PRO field, it is important to make a distinction between PROMs and patient-reported experience measures (PREMs). PROMs capture a person’s perception of their health, while PREMs capture a person’s perception of their experience with healthcare (e.g. quality of communication, access to and ability to navigate services) [3]. The 1415 postdiagnosis experience statements raised in the Martins et al. study were a combination of perceptions of health (PROs), coping and adjustment strategies and experiences of health‑ care (PREs) including “access to rehabilitation services” and “awareness receiving specialist care by professionals with specific e
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