Barriers and Benefits to the Use of Patient-Reported Outcome Measures in Routine Clinical Care: A Qualitative Study

Philpot, Lindsey M.; Barnes, Sunni A.; Brown, Rachel M.; Austin, Jessica A; James, Cameron S; Stanford, Richard H.; Ebbert, Jon O.

doi:10.1177/1062860617745986

Cited by 105 publications

(84 citation statements)

References 15 publications

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“…Participants believed clinician interest would be a key factor for successful implementation of ePROMs while a lack of awareness among patients and clinicians, time constraints, patients' literacy levels and access to internet/electronic devices were identified as potential barriers to the use of PROMs. These findings are in keeping with the findings presented in a number of previous studies [46,60].…”

Section: Discussionsupporting

confidence: 93%

Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

Aiyegbusi

Isa²,

Kyte

et al. 2020

Health Qual Life Outcomes

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Background: Rare diseases may be life-threatening or chronically debilitating conditions. Patient care needs are often complex and challenging to coordinate and deliver effectively. Rare diseases and their clinical management may therefore substantially impact on patients' health-related quality of life (HRQOL). The use of patient-reported outcome measures (PROMs) may complement clinical assessments by elucidating patients' perspectives on their health status and care priorities. This study explored the opinions of patients and clinicians on the use of PROMs in the management of patients with rare diseases in routine clinical practice. Methods: A total of 15 semi-structured one-to-one interviews were conducted with four patients with primary sclerosing cholangitis (PSC); five renal transplant recipients; and six PSC doctors from University Hospitals Birmingham (UHB) NHS Foundation Trust. A focus group session was also conducted with 10 clinical staff members (doctors, nurses and other allied health professionals from UHB). The suitability and acceptability of the Chronic Liver Disease Questionnaire (CLDQ) and the Short Form 12 (SF12) were assessed by patients with PSC and their doctors while the Paediatric quality of life inventory Transplant Module (PedsQL-TM) and the EuroQoL-5 dimensions (EQ. 5D) were evaluated by the renal transplant recipients and their doctors. The discussions were audio recorded and transcribed verbatim. Coding of the transcripts was done using the Nvivo 11 Plus software. Thematic analysis was conducted to identify the main themes and subthemes.

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Section: Discussionsupporting

confidence: 93%

Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

Aiyegbusi

Isa²,

Kyte

et al. 2020

Health Qual Life Outcomes

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“…In accordance with the findings of Philpot et al (33), the participants suggested omitting redundant questions and adding, for example, photos of the water faucet in question to help their understanding. Examples of questions that did not make sense for the participants in the assessment of functional status (HAQ, MDHAQ), the repetitive character of response options, and the need for questions that have relevance for the patients, are in accordance with the qualitative interview study of Ebbevi et al (34) about how individuals with RA experience the use of HAQ in routine care.…”

Section: Discussionsupporting

confidence: 83%

Patients’ Views on Routine Collection of Patient‐Reported Outcomes in Rheumatology Outpatient Care: A Multicenter Focus Group Study

Primdahl

Jensen

Meincke

et al. 2020

Arthritis Care & Research

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Objective To explore the patients’ views of the collection and use of patient‐reported outcomes as part of routine care in patients with inflammatory arthritis. Methods We conducted a qualitative focus group study based on interviews in each of the 5 geographical regions of Denmark. The analysis was based on content analysis. Four patient research partners were involved in the study. Results In total, 32 adult patients (21 female) with rheumatoid arthritis (n = 21), psoriatic arthritis (n = 6), and axial spondyloarthritis (n = 5) participated. The mean age was 60 years (range 32–80 years). Five themes were derived from the analysis: 1) a need for information about why the data are collected, reflecting patients’ uncertainty as to whether the collection of patient‐reported outcomes primarily served to monitor their own disease, to save money, or to gather data for research purposes; 2) inclusion of patient‐reported outcomes in the consultation, encompassing patients’ expectations of active use of the patient‐reported outcomes data during talks with rheumatologists or nurses; 3) reflections on how to respond to the patient‐reported outcome measures (PROMs) to obtain high quality data, referring to patients’ concerns about how to respond “correctly” and about issues that could affect their responses; 4) addressing patient‐reported outcomes to the individual's challenges, reflecting the need for a more individualized approach; and 5) possibilities for improvement in the use of patient‐reported outcomes, referring to patients’ ideas for the future use of patient‐reported outcomes. Conclusion Information and dialogue regarding the purpose of patient‐reported outcomes collection, how to respond to PROMs correctly, and inclusion of the patient‐reported outcomes data in the consultation are of importance to patients with inflammatory arthritis who routinely complete patient‐reported outcomes.

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“…Barriers to implementing PROMs include clinicians believing they do not have the capacity to use them [ 14 , 15 ], clinicians perceiving their practice is being judged on changes in PROMs scores [ 16 ], organisations not having the resources to utilise PROMs, such as no administrative support [ 17 ] and organisations not incorporating PROMs into existing workflows [ 18 ]. There are also factors which facilitate implementation.…”

Section: Introductionmentioning

confidence: 99%

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

Foster

Croot

Brazier

et al. 2018

J Patient Rep Outcomes

231

294

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BackgroundThere is increasing interest in using Patient Reported Outcome Measures (PROMs) within organisations delivering health related services. However, organisations have had mixed success in implementing PROMs and there is little understanding about why this may be. Thus, the purpose of this study was to identify the facilitators and barriers to implementing PROMs in organisations.MethodA systematic review of reviews was undertaken. Searches were conducted of five electronic databases: MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane Database of Systematic Reviews, during the week of the 20th February 2017. Additional search methods included website searching and reference checking. To be included, a publication had to be a review of the literature, describe its methods and include information related to implementing PROMs. The reviews were extracted using a standardised form and assessed for their risk of bias using the Risk of Bias in Systematic Reviews tool. The findings were synthesised using the Consolidated Framework for Implementation Research. The protocol was registered on the International Prospective Register of Systematic Reviews database (PROSPERO) (CRD42017057491).ResultsInitially 2047 records were identified. After assessing eligibility, six reviews were included. These reviews varied in their review type and focus. Different issues arose at distinct stages of the implementation process. Organisations needed to invest time and resources in two key stages early in the implementation process: ‘designing’ the processes for using PROMs within an organisation; and ‘preparing’ an organisation and its staff. The ‘designing’ stage involved organisations planning not just which PROMs to use and how to administer them, but also how the data would be used for clinical purposes. The ‘preparing’ stage involved getting an organisation and its staff ready to use PROMs, particularly persuading clinicians of the validity and value of PROMs, delivering training, and developing electronic systems. Having an implementation lead overseeing the process and developing the process based on feedback were also identified as facilitating implementation.ConclusionOrganisations implementing PROMs need to invest time and resources in ‘designing’ the PROMs strategy and ‘preparing’ the organisation to use PROMs. Focusing on these earlier stages may prevent problems arising when PROMs are used in practice.Electronic supplementary materialThe online version of this article (10.1186/s41687-018-0072-3) contains supplementary material, which is available to authorized users.

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Barriers and Benefits to the Use of Patient-Reported Outcome Measures in Routine Clinical Care: A Qualitative Study

Cited by 105 publications

References 15 publications

Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

Patients’ Views on Routine Collection of Patient‐Reported Outcomes in Rheumatology Outpatient Care: A Multicenter Focus Group Study

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

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