Healthcare, Vol. 11, Pages 98: The Voice of Patients Really Matters: Using Patient-Reported Outcomes and Experiences Measures to Assess Effectiveness of Home-Based Integrated Care—A Scoping Review of Practice

Reliable assessment of care, including integrated care, requires a multi-criterial approach. There is an increased interest in using the information provided by patients considering their health and experience related to healthcare [91,92]. Contemporary understanding of healthcare goes far beyond just providing health services. It is increasingly indicated that the health system must be designed to achieve health goals that are important to patients [91,93,94], which requires using PROMs and PREMs. The presented article can be considered a compendium of knowledge about the available indicators and the desired direction of further research aimed at the improvement of the effectiveness of integrated care. It identifies areas where research activities are particularly needed, which can be an inspiration for further research. It also allows you to familiarize yourself with a wide range of PROMs and PREMS questionnaires, indicating the added value of their use in healthcare management without overlooking them [12]. It is clear that various integrated care programs have been and are being evaluated in terms of clinical and economic effectiveness for many years, and the effectiveness of such interventions in these aspects has been repeatedly demonstrated [95,96,97]. However, the presented overview of practice in the assessment of IC indicates a different approach to this aspect, directing attention to the perspective and subjective feelings of patients, which resulted in some interesting observations. First of all, using PROMs is more popular than using PREMs. The use of patient-reported data is diverse both in terms of the type of disease and the country in which the research is carried out. According to the results of the presented overview, using PROMs and PREMs is most popular in the USA and Netherlands. In the United States, work has been ongoing since 2017 to incorporate additional incentive payments into the Medicare system to achieve desired health goals [98]. In 2004 USA initiated PROMIS (Patient-Reported Outcome Measurement Information System) to improve standards of data collection [99]. The Netherlands is commonly considered a European leader in national registry collection. Some registries include PROMs—for example National Quality Registry for Parkinson’s disease or the low back pain registry. Back in 2007, the country used for the first time value-based payments and introduced a successful bundled system payment for COPD and type-2 diabetes, which included PROMs [8]. Moreover, OECD undertakes numerous initiatives in this subject; for example, it is monitoring the collection of PREMs data in member countries [100]. Based on available data, disease-specific PROMs seem to give the broadest and most specific information on the condition of health of patients (both physiological and psychological) and combine the positive features of generic and state-specific indicators—on the one hand, relative versatility, and on the other, sufficient accuracy [101,102]. According to the presented overview, disease-specific PROMs are most commonly used—especially in the assessment of IC dedicated to COPD and depression. This is due to the availability of recognized research tools such as CAT or SGRQ in COPD or PHQ-9 in depression. PREMs were used less frequently, and the history of their usage is shorter, especially as a condition-specific tool [103] and in specific groups of patients; for example, children. The most significant limitation of the publication is a potential bias resulting from a limited to 10 years period in which eligible articles were published and the inclusion of only full-text articles indexed by PubMed. By deciding on such a research method, it is impossible to determine whether unpublished studies have adopted another form of reporting PROMs and PREMs. However, it seems that the analysis of nearly 7.000 publications allows for an overview of contemporary reporting practice outcomes measures reported by patients. Available studies seem to prove there is a correlation between experience and the effectiveness of procedures [104,105]. Nevertheless, PREMs should be collected and analyzed together with PROMs as some disparities might occur depending on clinical outcomes [7,106].

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