Abstract

BackgroundThe prevalence of cancer increases every year, leading to a growing population of patients and survivors in need for care. To achieve good quality care, a patient-centered approach is essential. Correct and timely detection of needs throughout the different stages of the care trajectory is crucial and can be supported by the use of screening and assessment in a stepped-care approach. The Cancer Rehabilitation Evaluation System (CARES) is a valuable and comprehensive quality of life and needs assessment instrument. For use in Flemish research and clinical practice, the CARES tool was translated for the Dutch-speaking part of Belgium (Flanders) from its original English format. This protocol paper describes the translation and revalidation of this Flemish CARES version.MethodsAfter forward-backward translation of the CARES into Flemish we aim to recruit 150 adult cancer patients with a primary cancer diagnosis (stage I, II or III) for validation. In this study with a combination of qualitative and a quantitative approach, qualitative data will be collected through focus groups and supplemented by two phases of quantitative data collection: i) an initial patient survey containing questions on socio-demographic and medical data, the CARES and seven concurrent instruments; and ii) a second survey administered after 1 week containing the CARES and supplementary questions to explore their impressions on the content and the feasibility of the CARES.DiscussionWith this extensive data collection process, psychometric validity of the Flemish CARES can be tested thoroughly using classical test theory. Internal consistency of summary scales, test-retest reliability, content validity, construct validity, concurrent validity and feasibility of the instrument will be examined. If the Flemish CARES version is found reliable, valid and feasible, it will be used in future research and clinical practice. Comprehensive assessment with the CARES in a stepped-care approach can facilitate timely identification of cancer patients’ psychosocial concerns and care needs so it can contribute to efficient provision of patient-centered quality care.Trial registrationClinicalTrials.gov: NCT02282696 (July 16, 2014).Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1335-4) contains supplementary material, which is available to authorized users.

Highlights

  • The prevalence of cancer increases every year, leading to a growing population of patients and survivors in need for care

  • And accurate detection of those psychosocial problems and care needs is of great importance to offer more patientcentered care, efficient referral and to prevent comorbid psychopathology [14,15,16,17,18].Simple quality of life (QOL) measurement and distress-screening are popular methods to explore people’s psychosocial well-being [9, 19,20,21,22]

  • Since current Cancer Rehabilitation Evaluation System (CARES) translation is made for the Dutch-speaking part of Belgium, this paper refers to the Flemish CARES version only

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Summary

Introduction

The prevalence of cancer increases every year, leading to a growing population of patients and survivors in need for care. For use in Flemish research and clinical practice, the CARES tool was translated for the Dutch-speaking part of Belgium (Flanders) from its original English format. And accurate detection of those psychosocial problems and care needs is of great importance to offer more patientcentered care, efficient referral and to prevent comorbid psychopathology [14,15,16,17,18].Simple quality of life (QOL) measurement and distress-screening are popular methods to explore people’s psychosocial well-being [9, 19,20,21,22]. The use of needs assessment can contribute to patientcentered quality cancer care [14, 25,26,27]

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