Patient-level barriers and facilitators to completion of patient-reported outcomes measures

Long, Chao; Beres, Laura K.; Wu, Albert W.; Giladi, Aviram M.

doi:10.1007/s11136-021-02999-8

Cited by 38 publications

(42 citation statements)

References 33 publications

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“…However, racial differences in perceived value of PROM feedback [ 53 ] underscore the need for more diverse sampling in future work. Understanding patient perspectives in the context of social determinants of health is imperative to address equity concerns with clinical expansion of PROMs, including differential ability to complete, interpret, and act on PROMs [ 54 , 55 ]. Disparities must be specifically examined related to digital PROM-based applications as certain subgroups may require additional training and support for their use.…”

Section: Discussionmentioning

confidence: 99%

Patients’ perspectives on the benefits of feedback on patient-reported outcome measures in a web-based personalized decision report for hip and knee osteoarthritis

Stern

Pila

Joseph

et al. 2022

BMC Musculoskelet Disord

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Background Applications of patient-reported outcome measures (PROMs) for individual patient management are expanding with the support of digital tools. Providing PROM-based information to patients can potentially improve care experiences and outcomes through informing and activating patients. This study explored patients’ perspectives on the benefits of receiving feedback on PROMs in the context of a web-based personalized decision report to guide care for their hip or knee osteoarthritis. Methods This qualitative descriptive interview study was nested in a pragmatic clinical trial of a personalized report, which includes descriptive PROM scores and predicted postoperative PROM scores. Patients completed a semi-structured interview within 6 weeks of an office visit with an orthopaedic surgeon. Only patients who reported receiving the report and reviewing it with the surgeon and/or a health educator were included. Data were iteratively analyzed using a combination of deductive and inductive coding strategies. Results Twenty-five patients aged 49–82 years (60% female, 72% surgical treatment decision) participated and described three primary benefits of the PROM feedback within the report: 1. Gaining Information About My Health Status, including data teaching new information, confirming what was known, or providing a frame of reference; 2. Fostering Communication Between Patient and Surgeon, encompassing use of the data to set expectations, ask and answer questions, and facilitate shared understanding; and 3. Increasing My Confidence and Trust, relating to the treatment outcomes, treatment decision, and surgeon. Conclusions Patients identified actual and hypothetical benefits of receiving feedback on PROM scores in the context of a web-based decision report, including advantages for those who had already made a treatment decision before seeing the surgeon. Findings provide insight into patients’ perspectives on how digital PROM data can promote patient-centered care. Results should be considered in the context of the homogeneous sample and complex trial. While participants perceived value in this personalized report, questions remain regarding best practices in patient-facing data presentation and engagement. Trial registration ClinicalTrials.gov, NCT03102580. Registered on 5 April 2017.

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Section: Discussionmentioning

confidence: 99%

Patients’ perspectives on the benefits of feedback on patient-reported outcome measures in a web-based personalized decision report for hip and knee osteoarthritis

Stern

Pila

Joseph

et al. 2022

BMC Musculoskelet Disord

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“…Cultural differences were noted as a barrier to follow-up within this review [26,35], mirrored in other studies showing how a lack of cultural adaptation results in higher attrition rates [57]. Additionally, tailoring tools to the patient population promotes shared decisionmaking and patient-centred care by building trust and incorporating patients' values [42,[58][59][60].…”

Section: Discussionmentioning

confidence: 64%

Patient Follow‐up After Orthopaedic Outreach Trips – Do We Know Whether Patients are Improving?

Leversedge¹,

Castro

Appiani³

et al. 2022

World j. surg.

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Background The burden of traumatic musculoskeletal injuries falls greatest on low- and middle-income countries (LMICs). To help address this burden, organizations host over 6,000 outreach trips annually, 20% of which are orthopaedic. Monitoring post-surgical outcomes is critical to ensuring care quality; however, the implementation of such monitoring is unknown. The purpose of this review is to identify published follow-up practices of short-term orthopaedic surgery outreach trips to LMICs. Methods We completed a systematic review of Pubmed, Web of Science, EMBASE, and ProQuest following PRISMA guidelines. Follow-up method, rate, duration, and types of outcomes measured along with barriers to follow-up were collected and reported. Results The initial search yielded 1,452 articles, 18 of which were eligible. The mean follow-up time was 5.4 months (range: 15 days-7 years). The mean follow-up rate was 65.8% (range: 22%-100%), the weighted rate was 57.5%. Fifteen studies reported follow-up at or after 3 months while eight studies reported follow-up at or after 9 months. Fifteen studies reported follow-up in person, three reported follow-up via phone call or SMS. Outcome reporting varied among mortality, complications, and patient-reported outcomes. The majority (75%) outlined barriers to follow-up, most commonly noting transportation and costs of follow-up to the patient. Conclusions There is minimal and heterogeneous public reporting of patient outcomes and follow-up after outreach trips to LMICs, limiting quality assessment and improvement. Future work should address the design and implementation of tools and guidelines to improve follow-up as well as outcome measurement to ensure provision of high-quality care.

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“…To guide primarily speaking a language other than English at home. 20 With language proficiency being an established barrier to PROMs completion, 35 the IAG raised the need for implementing the CINSW PRMs system in other languages most frequently spoken within the community, such as Arabic, Chinese and Vietnamese. This was challenging as we progressed with our implementation ahead of the CINSW PRMs system being available in different languages.…”

Section: Discussionmentioning

confidence: 99%

“…Our three implementation sites were located in a community with substantially more of its population born overseas (43%) compared to NSW (25.7%), and almost half (45%) of its population (including children of immigrants born in Australia) primarily speaking a language other than English at home 20 . With language proficiency being an established barrier to PROMs completion, 35 the IAG raised the need for implementing the CINSW PRMs system in other languages most frequently spoken within the community, such as Arabic, Chinese and Vietnamese. This was challenging as we progressed with our implementation ahead of the CINSW PRMs system being available in different languages.…”

Section: Discussionmentioning

confidence: 99%

Adapting an integrated care pathway for implementing electronic patient reported outcomes assessment in routine oncology care: Lessons learned from a case study

Bamgboje‐Ayodele

Avery

Pearson

et al. 2022

Evaluation Clinical Practice

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Rationale, Aims and Objective Details of the development and implementation of integrated care pathways (ICPs) in the context of electronic collection of patient reported outcomes (ePROs) for cancer patients are largely lacking in the literature. This study describes what, why and how decisions were made to adapt and implement an ePROs ICP for patients with lung cancer. Methods A consensus process was utilized, with the implementation advisory group including multidisciplinary representation from three participating hospitals, to identify local champions and adapt and incorporate the ePRO ICP into the local contexts. Engagement meetings were documented via meeting transcripts, and detailed notes from October 2019 to November 2020 were content‐analysed to identify decision‐making themes based on the Consolidated Framework for Implementation Research; workflows and process maps were reviewed and modified to integrate ePROs. Results In total, 55 engagement activities were held (24 meetings, 20 workshops 11 educational sessions), with n = 96 staff from multiple disciplines participating in the ePROs implementation through advisory meetings, process mapping, change management and staff education. Decisions were made regarding eligible patient cohorts to include, the process for onboarding patients onto the ePRO system, and follow‐up and referral pathways. Rationales for decisions included alignment with existing workflows, utilizing available staff, minimizing staff and patient burden and maximizing patient engagement. Conclusion Existing resources, staff input and technical and logistical reasons often guided the ICP decisions, highlighting the need for in‐depth engagement across all stakeholders for optimal implementation of ePRO ICPs. The ePRO implementation required substantial dialogue and systematic resolution to reach agreement on the final processes. Adapting the local ICP through rigorous engagement facilitated the successful implementation of ePROs as business‐as‐usual at all three cancer centres. Involving all relevant stakeholders is critical to the successful adaptation of ICPs before their introduction into routine care.

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Patient-level barriers and facilitators to completion of patient-reported outcomes measures

Cited by 38 publications

References 33 publications

Patients’ perspectives on the benefits of feedback on patient-reported outcome measures in a web-based personalized decision report for hip and knee osteoarthritis

Patients’ perspectives on the benefits of feedback on patient-reported outcome measures in a web-based personalized decision report for hip and knee osteoarthritis

Patient Follow‐up After Orthopaedic Outreach Trips – Do We Know Whether Patients are Improving?

Adapting an integrated care pathway for implementing electronic patient reported outcomes assessment in routine oncology care: Lessons learned from a case study

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