Raising the profile of pilot and feasibility studies in relation to the development, evaluation and implementation of patient-reported outcome measures

Jones, Georgina

doi:10.1186/s40814-017-0151-x

Cited by 7 publications

(11 citation statements)

References 26 publications

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“…The YC-PEM e-PRO is a recommended approach to evaluating a young child's participation in valued activities [19,20], yet there is critical need to identify supports and barriers to its uptake within a clinical workflow to support its adoption within an EI system of care [23]. This pilot trial contributes additional evidence to the feasibility, acceptability to caregivers, and value when implementing the YC-PEM e-PRO option to support family engagement to plan EI care [22].…”

Section: Discussionmentioning

confidence: 99%

“…In non-university affiliated EI programs, EI providers' lack of routine involvement in research may contribute to disengagement with testing YC-PEM e-PRO implementation, thereby making it a key setting to understand implementation [16]. There is need to establish YC-PEM feasibility when implemented into routine annual evaluations of the child's progress, YC-PEM value for understanding common areas of family need to address in an individualized family service plan, and YC-PEM acceptability from the parent perspective [23]. This will help to 1) determine whether the implementation of the YC-PEM e-PRO is practical [24], 2) identify further assessment and protocol modifications needed prior to future implementation efforts, and 3) assure individual site preparedness for implementation [24] and further testing of the intervention [16].…”

Section: Introductionmentioning

confidence: 99%

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Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

Albrecht

Kaelin

Rigau

et al. 2020

BMC Med Inform Decis Mak

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Background: Family-centered care is a valued approach to improving child and family outcomes in early intervention (EI), yet there is need to implement interventions that support information exchange for shared decision-making when planning and monitoring EI care. This study aims at estimating the feasibility, acceptability, and value of implementing the Young Children's Participation and Environment Measure (YC-PEM), a valid electronic patient-reported outcome (e-PRO) that is designed to support family engagement when planning care and monitoring outcomes of care. Methods: Data were gathered from caregivers (N = 139) that were enrolled in a Phase 1 trial of the YC-PEM e-PRO as implemented within 1 month of their child's next EI evaluation of progress. YC-PEM e-PRO feasibility was estimated according to enrollment and completion rates, and mean completion time. Chi-square tests were used to examine parent perceptions of YC-PEM e-PRO acceptability by caregiver education and family income. Caregiver feedback via open-ended responses were content coded to inform intervention and protocol optimizations. YC-PEM e-PRO value was estimated via composite and item-level scores to capture the extent of participation difficulty in home and community activities, and common areas of need regarding caregivers desired change in their child's participation.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

Albrecht

Kaelin

Rigau

et al. 2020

BMC Med Inform Decis Mak

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“…26 With the increased use of PROMs in clinical care and clinical trials, 27 feasibility testing is required to establish acceptability. 12 There are disease-specific PROMs as well as generic PROMs that can used across healthcare sites and conditions. 27 28 Although generic PROMs might not always be as sensitive as disease or condition specific PROMs, they are arguably easier to collect at scale due to their relevance across a wide range of patient groups.…”

Section: Strengths and Limitations Of This Studymentioning

confidence: 99%

“…Trial registration number ACTRN12621000298819 (Phase I and II) and ACTRN12621000969864 (Phase III) BACKGROUND Patient-reported outcome measures (PROMs) provide a measure of patient views of the outcomes of surgical, medical, allied health, nursing or other therapeutic interventions. [1][2][3][4][5][6] Across the globe, there is a push to take into account patient views of the outcomes of their episode of care, 2 7-11 alongside the patient experience 12 and clinician measures of therapy outcomes. 5 There is growing evidence supporting the integration of PROMS into usual care to improve safety, 13 quality, 14 shared decision making 15 and processes of care.…”

mentioning

confidence: 99%

Protocol for implementation of the ‘AusPROM’ recommendations for elective surgery patients: a mixed-methods cohort study

et al. 2021

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IntroductionIncorporating patient-reported outcome measures (PROMs) into usual care in hospitals can improve safety and quality. Gaps exist in electronic PROM (ePROM) implementation recommendations, including for elective surgery. The aims are to: (1) understand barriers and enablers to ePROM implementation in hospitals and develop Australian ePROM implementation recommendations (AusPROM); (2) test the feasibility and acceptability of the Quality of Recovery 15 item short-form (QoR-15) PROM for elective surgery patients applying the AusPROM and (3) establish if the QoR-15 PROM has concurrent validity with the EQ-5D-5L.Methods and analysisPhase I will identify staff barriers and facilitators for the implementation of the AusPROM recommendations using a Delphi technique. Phase II will determine QoR-15 acceptability for elective surgery patients across four pilot hospitals, using the AusPROM recommendations. For phase II, in addition to a consumer focus group, patients will complete brief acceptability surveys, incorporating the QoR-15, in the week prior to surgery, in the week following surgery and 4 weeks postsurgery. The primary endpoint will be 4 weeks postsurgery. Phase III will be the national implementation of the AusPROM (29 hospitals) and the concurrent validity of the QoR-15 and generic EQ-5D-5L. This protocol adopts the Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trials Protocols guidelines.Ethics and disseminationThe results will be disseminated via public forums, conferences and peer-reviewed journals. Ethics approval: La Trobe University (HEC20479).Trial registration numberACTRN12621000298819 (Phase I and II) and ACTRN12621000969864 (Phase III)

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“…Electronic patient-reported outcomes (e-PROs) may be a viable HIT strategy to enhance an EI electronic data capture system [16]. An e-PRO is an electronic assessment of health status that is completed by the patient (e.g., areas of participation difficulty).…”

Section: Introductionmentioning

confidence: 99%

Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned

Rigau

Scully

Dooling-Litfin

et al. 2018

J. Clin. Trans. Sci.

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Background Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation. Methods This second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in three phases: initial e-PRO intervention, peer mentor enhancement, and standard recruitment protocol. Results Implementation of the e-PRO intervention and peer mentoring enhancement yielded low enrollment rates over the first six months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832). Conclusions This study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention prior to scale-up.

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Raising the profile of pilot and feasibility studies in relation to the development, evaluation and implementation of patient-reported outcome measures

Cited by 7 publications

References 26 publications

Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

Protocol for implementation of the ‘AusPROM’ recommendations for elective surgery patients: a mixed-methods cohort study

Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned

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