Dataset Information

Understanding the extent to which PROMs and PREMs used with older people with severe frailty capture their multidimensional needs: A scoping review.

ABSTRACT:

Background

Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this.

Aim

To establish whether, and in what ways, the needs of older people living with severe frailty are represented within existing PROMs and PREMs and to examine the extent to which the measures have been validated with this patient group.

Design

The scoping review follows the method of Arksey and O'Malley.

Results

Seventeen papers from 9 countries meeting the inclusion criteria and 18 multi-dimensional measures were identified: 17 PROMs, and 1 PROM with PREM elements. Seven out of the 18 measures had evidence of being tested for validity with those with frailty. No measure was developed specifically for a frail population. Using the adapted framework of palliative need, five measures covered all five domains of palliative need (IPOS, ICECAP-SCM, PDI, WHOQOL-BREF, WHOQOL-OLD). The coverage of items within the domains varied between the measures.

Conclusion

Existing PROMs and PREMs are not well designed for what we know about the needs of older people with severe frailty. Future research should firstly focus on adapting and validating the existing measures to ensure they are fit for purpose, and secondly on developing a better understanding of how measures are used to deliver/better person-centred care.

SUBMITTER: Howard FD

PROVIDER: S-EPMC10865766 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature

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Publications

Understanding the extent to which PROMs and PREMs used with older people with severe frailty capture their multidimensional needs: A scoping review.

Howard Faith D FD Green Richard R Harris Jenny J Ross Joy J Nicholson Caroline C

Palliative medicine 20240124 2

<h4>Background</h4>Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this.<h4>Aim</h4>To establish whether, and in what ways, the needs of older people living with severe frailty are represented within existing PROMs and PREMs and to examine the ext ...[more]

PMID: 38268061

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Project description:BackgroundIn the transition towards value-based healthcare, patient-reported outcome and experience measures (PROM and PREM) are recommended by international collaborations and government programs to guide clinical practice and quality improvement. For many conditions, using PROM/PREM over the complete continuum of care requires implementation across care organizations and disciplines. Along PROM/PREM implementation in obstetric care networks (OCN), we aimed to evaluate implementation outcomes and the processes influencing these outcomes in the complex context of care networks across the continuum of perinatal care.MethodsThree OCN in the Netherlands implemented PROM/PREM in routine practice, using an internationally developed outcomes set with care professionals and patient advocates. Their aim was to use PROM/PREM results individually to guide patient-specific care decisions and at group-level to improve quality of care. The implementation process was designed following the principles of action research: iteratively planning implementation, action, data generation and reflection to refine subsequent actions, involving both researchers and care professionals. During the one-year implementation period in each OCN, implementation outcomes and processes were evaluated in this mixed-methods study. Data generation (including observation, surveys and focus groups) and analysis were guided by two theoretical implementation frameworks: the Normalization Process Theory and Proctor's taxonomy for implementation outcomes. Qualitative findings were supplemented with survey data to solidify findings in a broader group of care professionals.ResultsCare professionals in OCN found the use of PROM/PREM acceptable and appropriate, recognized their benefits and felt facilitated in their patient-centered goals and vision. However, feasibility for daily practice was low, mainly due to IT issues and time constraints. Hence PROM/PREM implementation did not sustain, but strategies for future PROM/PREM implementation were formulated in all OCN. Processes contributing positively to implementation outcomes were internalization (understand the value) and initiation (driven by key-participants), whereas challenges in relational integration (maintain confidence) and reconfiguration (refine activities) affected implementation negatively.ConclusionAlthough implementation did not sustain, network-broad PROM/PREM use in clinic and quality improvement matched professionals' motivation. This study provides recommendations to implement PROM/PREM meaningfully in practice in ways that support professionals in their drive towards patient-centered care. In order for PROM/PREM to fulfill their potential for value-based healthcare, our work highlights the need for sustainable IT infrastructures, as well as an iterative approach to refine their complex implementation into local contexts.

Project description:BackgroundPatient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings.MethodsAn umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary.DiscussionThis umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified.Systematic review registrationPROSPERO CRD42023421845.

Project description:BackgroundPatient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are becoming essential parts of a learning health system, and using these measures is a promising approach for value-based healthcare. However, evidence regarding healthcare professional and patient organizations' knowledge, use and perception of PROMs and PREMs is lacking.ObjectivesThe objectives of the study were to: 1- Describe the current knowledge and use of PROMs and PREMs by healthcare professional and patient organizations, 2- Describe the determinants of PROMs and PREMs implementation according to healthcare professional and patient organizations.MethodsWe conducted an environmental scan using semi-structured interviews with representatives from healthcare professional and patient organizations. Interviews were recorded and live coded based on the Franklin framework. We used inductive and deductive thematic analysis to extract information about the main themes addressed during the interview (awareness of PROMs and PREMs, examples of implementation and use of PROMs and PREMs, tools used, vision for future implementation, barriers and facilitators to implementation and the best way to collect PROMs and PREMs data).Results63% of healthcare professional organizations (n = 19) and 41% of patient organizations (n = 9) that were contacted agreed to have a representative interviewed. The representatives from both the healthcare professional and patient organizations acknowledged the importance of assessing patients' experience and outcomes. However, they considered the implementation of PROMs and PREMs tools to be scarce within their organizations, in clinical practice and in the education system. Patient organizations were worried that overuse of PROMs and PREMs could lead to depersonalization of practice. Barriers to implementing PROMs and PREMs included lack of awareness of tools, resistance to change and lack of motivation to complete or explain the questionnaire. Barriers also included factors such as lack of financial, technological and human resources and issues with integration of data and inconsistency of digital platforms.ConclusionsThis environmental scan revealed a lack of awareness of tools by healthcare professional and patient organizations' representatives and limited implementation. Adequate training, technological integration, and demonstration of PROMs and PREMs benefits to foster broader adoption in clinical and organizational settings is dearly needed. Addressing these challenges is essential for enhancing value-based care.

Dataset Information

Understanding the extent to which PROMs and PREMs used with older people with severe frailty capture their multidimensional needs: A scoping review.

Background

Aim

Design

Results

Conclusion

Publications

Understanding the extent to which PROMs and PREMs used with older people with severe frailty capture their multidimensional needs: A scoping review.

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