Maximising the impact of patient reported outcome assessment for patients and society

Calvert, Melanie; Kyte, Derek; Price, Gary; Valderas, José M; Hjøllund, Niels Henrik

doi:10.1136/bmj.k5267

Cited by 217 publications

(243 citation statements)

References 33 publications

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“…Considering the evidence reviewed here, we identify two priority areas for further research and development. First, there is an urgent need to establish how to enable the routine collection of patient evaluations of health and health care using patient-reported experience and outcome measures (PREMS and PROMs) and to incorporate these into comprehensive assessment frameworks [21,106,[120][121][122][123][124]. Second, there is a need to advance approaches for the measurement of the role of service users (and their carers) as active partners in service delivery.…”

Section: Discussionmentioning

confidence: 99%

Quality of care assessment for people with multimorbidity

et al. 2019

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Multimorbidity, the simultaneous presence of multiple health conditions in an individual, is an increasingly common phenomenon globally. The systematic assessment of the quality of care delivered to people with multimorbidity will be key to informing the organization of services for meeting their complex needs. Yet, current assessments tend to focus on single conditions and do not capture the complex processes that are required for providing care for people with multimorbidity. We conducted a scoping review on quality of care and multimorbidity in selected databases in June 2018 and identified 87 documents as eligible for review, predominantly original research and reviews from North America, Europe and Australasia and mostly frequently related to primary care settings. We synthesized data qualitatively in terms of perceived challenges, evidence and proposed metrics. Findings reveal that the association between quality of care and multimorbidity is complex and depends on the conditions involved (quality appears to be higher for those with concordant conditions, and lower in the presence of discordant conditions) and the approach used for measuring quality (quality appears to be higher in people with multimorbidity when measured using condition/drug‐specific process or intermediate outcome indicators, and worse when using patient‐centred reports of experiences of care). People with discordant multimorbidity may be disadvantaged by current approaches to quality assessment, particularly when they are linked to financial incentives. A better understanding of models of care that best meet the needs of this group is needed for developing appropriate quality assessment frameworks. Capturing patient preferences and values and incorporate patients’ voices in the form of patient‐reported experiences and outcomes of care will be critical towards the achievement of high‐performing health systems that are responsive to the needs of people with multimorbidity.

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Section: Discussionmentioning

confidence: 99%

Quality of care assessment for people with multimorbidity

et al. 2019

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“…There was limited reporting of patient-reported QOL; outcomes were detailed in only two prospective studies 60,62 and one retrospective study 58 , with small patient numbers and short follow-ups for the PMRT groups 58,60,62 . A priori hypothesis-driven selection of QOL domains was absent from methods 58,60,62 , with no reporting of missing data or how this problem was tackled 34 . Three studies 58,60,62 used the BREAST-Q and one 60 used the breast cancer-specific questionnaire (EORTC QLQ-BR23) 42 .…”

Section: Quality Of Lifementioning

confidence: 99%

“…One way to measure what matters to patients is to use patient-reported outcome measures (PROMs) to assess the effects of disease or treatment on symptoms, functioning and health-related QOL 34 . In this systematic review, PROMs were poorly reported and underpowered for overall small effect sizes of individual QOL domains 43 .…”

Section: Cosmetic Outcomesmentioning

confidence: 99%

“…This systematic review aimed to evaluate the quality and strengths of the current evidence regarding surgical complications in autologous abdominal flaps in the context of the receipt and timing of radiotherapy related to PMRT and, less commonly, neoadjuvant radiotherapy, generally administered before skin‐sparing mastectomy and immediate breast reconstruction, including assessment of QOL.…”

Section: Introductionmentioning

confidence: 99%

“…Most surgeons use the Clavien-Dindo classification (CDC) 26 . Patientreported QOL outcomes using validated BRR questionnaires, such as the BREAST-Q and the European Organisation for Research and Treatment of Cancer (EORTC) Quality-of-Life Questionnaire (QLQ)-BRECON23, are recommended to evaluate comparative effectiveness 20,27 -32 . This systematic review aimed to evaluate the quality and strengths of the current evidence regarding surgical complications in autologous abdominal flaps in the context of the receipt and timing of radiotherapy related to PMRT 5,6 and, less commonly, neoadjuvant radiotherapy, generally administered before skin-sparing mastectomy and immediate breast reconstruction 33 , including assessment of QOL 34 .…”

Section: Introductionmentioning

confidence: 99%

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Immediate and delayed autologous abdominal microvascular flap breast reconstruction in patients receiving adjuvant, neoadjuvant or no radiotherapy: a meta-analysis of clinical and quality-of-life outcomes

et al. 2019

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Background Effects of postmastectomy radiotherapy (PMRT) on autologous breast reconstruction (BRR) are controversial regarding surgical complications, cosmetic appearance and quality of life (QOL). This systematic review evaluated these outcomes after abdominal free flap reconstruction in patients undergoing postoperative adjuvant radiotherapy (PMRT), preoperative radiotherapy (neoadjuvant radiotherapy) and no radiotherapy, aiming to establish evidence‐based optimal timings for radiotherapy and BRR to guide contemporary management. Methods The study was registered on PROSPERO (CRD42017077945). Embase, MEDLINE, Google Scholar, CENTRAL, Science Citation Index and ClinicalTrials.gov were searched (January 2000 to August 2018). Study quality and risk of bias were assessed using GRADE and Cochrane's ROBINS‐I respectively. Results Some 12 studies were identified, involving 1756 patients (350 PMRT, 683 no radiotherapy and 723 neoadjuvant radiotherapy), with a mean follow‐up of 27·1 (range 12·0–54·0) months for those having PMRT, 16·8 (1·0–50·3) months for neoadjuvant radiotherapy, and 18·3 (1·0–48·7) months for no radiotherapy. Three prospective and nine retrospective cohorts were included. There were no randomized studies. Five comparative radiotherapy studies evaluated PMRT and four assessed neoadjuvant radiotherapy. Studies were of low quality, with moderate to serious risk of bias. Severe complications were similar between the groups: PMRT versus no radiotherapy (92 versus 141 patients respectively; odds ratio (OR) 2·35, 95 per cent c.i. 0·63 to 8·81, P = 0·200); neoadjuvant radiotherapy versus no radiotherapy (180 versus 392 patients; OR 1·24, 0·76 to 2·04, P = 0·390); and combined PMRT plus neoadjuvant radiotherapy versus no radiotherapy (272 versus 453 patients; OR 1·38, 0·83 to 2·32, P = 0·220). QOL and cosmetic studies used inconsistent methodologies. Conclusion Evidence is conflicting and study quality was poor, limiting recommendations for the timing of autologous BRR and radiotherapy. The impact of PMRT and neoadjuvant radiotherapy appeared to be similar.

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Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research

Rivera

Aiyegbusi

Ives

et al. 2022

JAMA

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IMPORTANCE Patient-reported outcomes (PROs) can inform health care decisions, regulatory decisions, and health care policy. They also can be used for audit/benchmarking and monitoring symptoms to provide timely care tailored to individual needs. However, several ethical issues have been raised in relation to PRO use. OBJECTIVE To develop international, consensus-based, PRO-specific ethical guidelines for clinical research. EVIDENCE REVIEWThe PRO ethics guidelines were developed following the Enhancing the Quality and Transparency of Health Research (EQUATOR) Network's guideline development framework. This included a systematic review of the ethical implications of PROs in clinical research. The databases MEDLINE (Ovid), Embase, AMED, and CINAHL were searched from inception until March 2020. The keywords patient reported outcome* and ethic* were used to search the databases. Two reviewers independently conducted title and abstract screening before full-text screening to determine eligibility. The review was supplemented by the SPIRIT-PRO Extension recommendations for trial protocol. Subsequently, a 2-round international Delphi process (n = 96 participants; May and August 2021) and a consensus meeting (n = 25 international participants; October 2021) were held. Prior to voting, consensus meeting participants were provided with a summary of the Delphi process results and information on whether the items aligned with existing ethical guidance.FINDINGS Twenty-three items were considered in the first round of the Delphi process: 6 relevant candidate items from the systematic review and 17 additional items drawn from the SPIRIT-PRO Extension. Ninety-six international participants voted on the relevant importance of each item for inclusion in ethical guidelines and 12 additional items were recommended for inclusion in round 2 of the Delphi (35 items in total). Fourteen items were recommended for inclusion at the consensus meeting (n = 25 participants). The final wording of the PRO ethical guidelines was agreed on by consensus meeting participants with input from 6 additional individuals. Included items focused on PRO-specific ethical issues relating to research rationale, objectives, eligibility requirements, PRO concepts and domains, PRO assessment schedules, sample size, PRO data monitoring, barriers to PRO completion, participant acceptability and burden, administration of PRO questionnaires for participants who are unable to self-report PRO data, input on PRO strategy by patient partners or members of the public, avoiding missing data, and dissemination plans. CONCLUSIONS AND RELEVANCEThe PRO ethics guidelines provide recommendations for ethical issues that should be addressed in PRO clinical research. Addressing ethical issues of PRO clinical research has the potential to ensure high-quality PRO data while minimizing participant risk, burden, and harm and protecting participant and researcher welfare.

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Maximising the impact of patient reported outcome assessment for patients and society

Abstract: Patient reported outcome measures can help drive global patient centred healthcare reform, but we need a more efficient coordinated approach to assessment if we are to fully realise benefits for patients and society, say Melanie Calvert and colleagues

Cited by 217 publications

References 33 publications

Quality of care assessment for people with multimorbidity

Quality of care assessment for people with multimorbidity

Immediate and delayed autologous abdominal microvascular flap breast reconstruction in patients receiving adjuvant, neoadjuvant or no radiotherapy: a meta-analysis of clinical and quality-of-life outcomes

Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research

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