Journal of Patient-Reported Outcomes 

About: Journal of Patient-Reported Outcomes is an academic journal published by SpringerOpen. The journal publishes majorly in the area(s): Medicine & Quality of life (healthcare). It has an ISSN identifier of 2509-8020. It is also open access. Over the lifetime, 571 publications have been published receiving 4778 citations. The journal is also known as: JPRO.

How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis

Abstract: In this paper, we report the findings of a realist synthesis that aimed to understand how and in what circumstances patient reported outcome measures (PROMs) support patient-clinician communication and subsequent care processes and outcomes in clinical care We tested two overarching programme theories: (1) PROMs completion prompts a process of self-reflection and supports patients to raise issues with clinicians and (2) PROMs scores raise clinicians’ awareness of patients’ problems and prompts discussion and action We examined how the structure of the PROM and care context shaped the ways in which PROMs support clinician-patient communication and subsequent care processes PROMs completion prompts patients to reflect on their health and gives them permission to raise issues with clinicians However, clinicians found standardised PROMs completion during patient assessments sometimes constrained rather than supported communication In response, clinicians adapted their use of PROMs to render them compatible with the ongoing management of patient relationships Individualised PROMs supported dialogue by enabling the patient to tell their story In oncology, PROMs completion outside of the consultation enabled clinicians to identify problematic symptoms when the PROM acted as a substitute rather than addition to the clinical encounter and when the PROM focused on symptoms and side effects, rather than health related quality of life (HRQoL) Patients did not always feel it was appropriate to discuss emotional, functional or HRQoL issues with doctors and doctors did not perceive this was within their remit This paper makes two important contributions to the literature First, our findings show that PROMs completion is not a neutral act of information retrieval but can change how patients think about their condition Second, our findings reveal that the ways in which clinicians use PROMs is shaped by their relationships with patients and professional roles and boundaries Future research should examine how PROMs completion and feedback shapes and is influenced by the process of building relationships with patients, rather than just their impact on information exchange and decision making

The Japanese version of the National Cancer Institute’s patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE): psychometric validation and discordance between clinician and patient assessments of adverse events

Abstract: The Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) was developed by the National Cancer Institute as an adverse event assessment system to evaluate patients’ symptoms, which tend to be underestimated in cancer clinical trials. The aim of this study was to assess the psychometric properties of the Japanese version of the PRO-CTCAE and the degree of adverse event assessment discordance between clinicians and patients. A total of 187 cancer patients receiving systemic therapy were enrolled. Reproducibility, criterion validity, and responsiveness of the Japanese version of PROCTCAE were assessed. The EORTC QLQ-C30 was used as an external anchor. Discordance of assessment of adverse events between clinician and patients were also assessed using the CTCAE and PRO-CTCAE. A total of 187 participants (187 for criterion validity, 80 for reproducibility, and 100 for responsiveness), were analyzed (Mage = 62.4 years). All patients responded to at least one symptom item (M = 16). The mean (SD) intra-class correlation coefficients of overall reproducibility for the Japanese PRO-CTCAE was 0.63 (0.02). The correlation coefficient for the corresponding items in the EORTC QLQ-C30 and the Japanese PRO-CTCAE was high (Pearson r = 0.56–0.76). The analysis of responsiveness revealed significant dose-response trends (Jonckheere-Terpstra test, ps < 0.001). Depending on the adverse events, a discrepancy was observed in evaluation between the clinician and patient. These results revealed that there is underestimation in the assessment of adverse events in Japan, and that the Japanese version of the PRO-CTCAE had acceptable reliability and validity for common and clinically important symptoms.

Japanese translation and linguistic validation of the US National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE)

Abstract: The US National Cancer Institute (NCI) has developed the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) to capture patients’ self-reported symptomatic adverse events in cancer clinical trials. The aim of this study was to develop and linguistically validate a Japanese translation of PRO-CTCAE. Forward- and back-translations were produced, and an independent review was performed by the Japan Clinical Oncology Group (JCOG) Executive Committee and the US NCI. We then conducted cognitive interviews with 21 patients undergoing cancer treatment. Participants were asked to complete the PRO-CTCAE and were interviewed using semi-structured scripts and predetermined probes to investigate whether any items were difficult to understand or answer. The interviews were recorded and transcribed, and a thematic analysis was performed. The data were split into two categories: 1) remarks on the items and 2) remarks on the questionnaire in general. Twenty-one cancer patients undergoing chemotherapy or hormone therapy were interviewed at the University of Tokyo Hospital and the Kansai Medical University Hirakata Hospital during 2011 and 2012. Thirty-three PRO-CTCAE items were evaluated as “difficult to understand,” and 65 items were evaluated as “difficult to answer” by at least one respondent. However, on further investigation, only 24 remarks were categorized as “comprehension difficulties” or “clarity” issues. Most of these remarks concerned patients’ difficulties with rating their experience of individual symptomatic events. The study provides preliminary evidence supporting the linguistic validity of the Japanese version of PRO-CTCAE. Further cognitive interviewing is warranted for PRO-CTCAE items relating to sexuality and anxiety and for response options on severity attribute items.

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

Abstract: There 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. A 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). Initially 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. Organisations 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.

Towards the use of mixed methods inquiry as best practice in health outcomes research

Abstract: Mixed methods research (MMR) has found an increased interest in the field of health outcomes research. Consideration for both qualitative and quantitative perspectives has become key to contextualising patient experiences in a clinically meaningful measurement framework. The purpose of this paper is to outline a process for incorporating MMR in health outcomes research to guide stakeholders in their understanding of the essence of mixed methods inquiry. In addition, this paper will outline the benefits and challenges of MMR and describe the types of support needed for designing and conducting robust MMR measurement studies. MMR involves the application of a well-defined and pre-specified research design that articulates purposely and prospectively, qualitative and quantitative components to generate an integrated set of evidence addressing a single research question. Various methodological design options are possible depending on the research question. MMR designs allow a research question to be studied thoroughly from different perspectives. When applied, it allows the strengths of one approach to complement the restrictions of another. Among other applications, MMR can be used to enhance the creation of conceptual models and development of new instruments, to interpret the meaningfulness of outcomes in a clinical study from the patient perspective, and inform health care policy. Robust MMR requires research teams with experience in both qualitative and quantitative research. Moreover, a thorough understanding of the underlying principles of MMR is recommended at the point of study conception all the way through to implementation and knowledge dissemination. The framework outlined in this paper is designed to encourage health outcomes researchers to apply MMR to their research and to facilitate innovative, patient-centred methodological solutions to address the complex challenges of the field.