What are the attitudes of health professionals regarding patient reported outcome measures (PROMs) in oncology practice? A mixed-method synthesis of the qualitative evidence

Promoting patients’ engagement with their health care has been viewed as a means of improving the identification of patient needs and priorities and creating opportunities to address those needs during the cancer journey [1, 2]. Patient-reported outcome measures (PROMs) are derived from patient self-assessment of a variety of health and wellbeing indices, and provide information to health professionals (HPs) about the patient’s health status [3, 4]. PROMs data may relate to one or multiple health-relevant domains including psychological and physical wellbeing, and be collected using a range of electronic and/or paper-based mediums [5]. Studies have identified differences between patient and clinician assessments of outcomes in oncology with regard to treatment side effects, numerous physical symptoms, as well as psychological issues, whereby oncologists only identified a small proportion of the total patients who were experiencing clinical anxiety and depression [6, 7]. This discordance has not improved over the past two decades [6, 7], supporting the need for patients’ direct reports. A systematic review found that PROMs may be useful in cancer care, to longitudinally monitor and respond to the impacts of treatments or symptoms on patients’ lives [8]. For example, some PROMs are designed to automatically trigger the provision of tailored information to patients to help them address their symptoms and side-effects [4, 9, 10].

Systematic collection and feedback of PROMs results to the care team is reported to improve processes and outcomes of care [1, 4]. In a randomised controlled trial, 766 patients receiving outpatient chemotherapy were randomly assigned to an intervention or control group. The control group received standard care with symptoms monitored by the treating clinician while the intervention group, in addition, electronically reported on 12 common symptoms at set times [1]. Patients in the intervention group scored higher on the health-related quality of life measure, showed greater treatment adherence, had fewer hospital admissions and had a higher survival rate at 1 year. Ahmed and colleagues [11] propose that PROMs are useful for comparing treatments and can also be used to evaluate quality improvement activities. Additionally, a systematic review of the effects of PROMs on clinical practice identifies potential benefits in micro-level patient-clinician interactions, predominantly by enhancing communication and revealing psychological and physical issues [5, 12]. However, evidence for the impact of PROMs on clinical practices, such as prompting appropriate referrals, is reported to be weak [5, 13] or ambiguous [8], and a greater understanding of how PROMs may be integrated and used in clinical care has been sought [3, 5].

Howell et al. [3] observed that little is known about the evidence concerning the introduction of PROMs into routine practice. A strength of qualitative research is that it captures the perspectives of those involved in interventions or programs, such as during the introduction of PROMs. This information may help to guide the future implementation [14]. Boyce and colleagues [15] undertook a systematic review of qualitative research that examined HPs’ views and experiences with PROMs, through which they identified a set of concerns. HPs raised practical concerns about possible increases in workload, especially where PROMs were not fully integrated into existing patient management systems, and highlighted the importance of training. Some HPs were not open to changing their practices and harboured negative attitudes towards PROMs, potentially hindering adoption. In some studies, clinicians suggested that the relative clinical importance of different PROMs needed clarification, and PROMs data needed to be aggregated to contextualise and complement other clinical data. Mixed views were reported about the capacity of PROMs to improve patient care and some clinicians worried about negative impacts on the patient-clinician relationship. On the positive side, the Boyce review [15] reported that professionals believe PROMs increased patient education, stimulated better care planning and built confidence in the competence of the professional.

The Boyce et al. [15] review raised a number of important issues, but excluded qualitative research from mixed-methods studies. Such studies are often used in program development and studies of acceptability and feasibility. While some of the studies examined were in oncology (n = 1) and palliative care (n = 5), the focus of that review was not disease specific. Extending previous work, the present systematic review and synthesis of qualitative research concerning the attitudes of HPs to PROMs, specific to cancer care, will provide insights to guide implementation efforts.

We systematically reviewed qualitative evidence to enhance understanding of HPs’ attitudes towards PROMs in oncology services, and to gain insight into the barriers and facilitators for their adoption and use. Our meta-synthesis identified four key attitudinal domains: identifying patient issues and needs using PROMs; managing and addressing patient issues; the care experience; and the integration of PROMs into clinical practice. Key considerations for implementation of PROMS include: the fit with existing practice; how PROMs are valued; the capacity of professionals to respond to PROMs; and the supports in place.

PROMs have received increased attention from oncology researchers [4, 5]. Overall, the qualitative evidence is of good quality and captured recent findings, with half of the studies having been published from 2015 onwards. The inclusion of qualitative content from mixed-method research, where appropriate, facilitated examination of findings from study designs that appear to be often employed in research on the development and piloting of PROMs. The majority of studies are based in North American and European contexts, and encompass a range of service settings where PROMs may be applied, as well as presenting the views of various professional groups involved in their use. In many cases, studies included well-established patient measures, but also included views about PROMs use as a general concept.

The overall sentiments from the opinions of HPs towards PROMs was mostly neutral, with a more positive tail compared to negative densities. Consistent with the literature, many HPs believe PROMs support communication with patients; enabling them to know their patients better [4, 5, 43] but there are concerns that PROMs could negatively impact these relationships by diminishing the “human touch” in the care process [15]. In relation to sensitive or embarrassing issues for patients, PROMs were viewed as both potentially facilitative and potentially upsetting; this reflects previous findings [3, 8]. Interestingly, a few studies reported that embarrassment or distress may also be experienced by HPs using PROMs [30, 33]. One study included in-depth considerations of the cultural dimensions of PROMs, in which largely favourable views were expressed by HPs about the use of culturally appropriate PROMs designed for care of patients from Australian Indigenous communities [56]. We would advocate for further exploration of PROMs development and use in the care of patients from culturally and linguistically diverse communities, especially as our analysis noted that HPs viewed patients’ language proficiency as a potential impediment to meaningful participation.

Many HPs perceived PROMs as facilitating the identification of patient issues, including non-medical concerns such as psychosocial and quality of life issues [3, 4, 12, 15]. Some HPs see PROMs as empowering patients by encouraging them to give voice to issues they experience as significant and facilitating their capacity to play a more active role in their care, including through self-management (c.f. Howell et al. [3]). However, staff also gave careful thought to logistical and practical barriers that patients may face in reporting PROMs, and to the burden this could place on patients. The capacity for these measures to positively affect patients’ care was a key element of HPs’ appraisal of the value of PROMs; it is a likely a critical determinant of the active uptake of PROMs in practice.

The nature and timing of the PROMs data to be collected are important. In alignment with previous reports, HPs placed value on the collection of data which was: novel (i.e. avoiding duplication); relevant, containing clear indicators of clinical significance; appropriate for the specific cancer; and collected at significant points in the patient journey. These valuations were interwoven with HPs’ views about how these PROMs data would be subsequently used in practice. Perceptions of poor clinical utility could form an implementation barrier. HPs recognised the potential to promote earlier intervention and more holistic approaches to care but were concerned where they felt unable to adequately respond to the issues identified (e.g., issues for which feasible solutions were unavailable).

Some studies reported that HPs were concerned that some patients may have difficulty distinguishing levels of severity and therefore they desired more objective measures [27, 32, 38, 56]. A clinician with these concerns, overall or for a specific patient, may find it challenging to know how to best proceed. This mix of positive views and negative fears is perhaps not surprising, as previous reviews have not been able to establish conclusively the impact of PROMs on corresponding clinical actions, such as an increase in appropriate referrals or changes to patient management plans [5, 8, 13].

Howell et al. [3] observed that the relationship between the clinical communication of PROMs data and health outcomes is complex. This meta-synthesis of professional end-users’ accounts can contribute to deepening understanding surrounding the potential for disjointedness. Staff members’ views about their capacity to respond to PROMs data are crucial: they need the skills to engage with patients about needs identified by PROMs, including the skills and confidence to discuss sensitive subjects; they need to be comfortable that they have sufficient time to respond, given competing priorities in their workload; and they need to have referral pathways for patients whose needs require additional time or expertise. As coordination may bring challenges, the clear delineation of roles and responsibilities associated with responding to PROMs data within care teams may help to optimise a response. Further, recognition of any additional time that may be needed for the management of PROMs data, including accounting for additional time during the initial learning curve could facilitate active uptake. This may be especially important where HPs need to develop additional technological skills.

Findings from Chen et al.’s [5] systematic review suggest that the reporting of data alone may not be sufficient, but that positive changes in patient management could be more probable where PROMs collection is integrated into care planning. Our findings echo this principle and point to several priority areas for integration. From the accounts of HPs, PROMs use could be facilitated where it is embedded within the existing patient management system, and where staff are able to navigate this with ease. In this regard, the electronic collection of PROMs may have a distinct advantage. It was also deemed important that PROMs be incorporated within existing practices (e.g. consultations or assessment practices) and this could optimise efficiency. Providing staff members with guidelines for the use of PROMs in clinical practice may also be beneficial. Consistent with the literature [4, 5, 13, 15], our analysis would suggest that implementation efforts could be enhanced by the provision of staff training and ongoing support, establishing “buy in” from front line staff and appreciation on the part of managers about how PROMs may impact clinical practice. However, many of the issues raised such as coordination, workflow and clinical utility, which form negative HP attitudes are vital to tackle alongside these recommendations to improve implementation prospects.

The use of PROMs in oncology services may offer a valuable tool to help identify and manage patients’ needs over the course of their cancer journey. This paper advances existing understanding by reporting on a body of evidence which captures the sentiments and perspectives of those end-users critical to the adoption of PROMs in oncology practice. The findings articulate important pre-conditions, from the perspectives of HPs, for the successful implementation of PROMs; providing insights for policy-makers and services involved in rolling out these initiatives. Examination of the evidence points to several future research directions. Further exploration of the potentially empowering dimension of PROMs use could begin with a meta-synthesis of the qualitative evidence concerning oncology patients’ experiences with PROMs. The accessibility of PROMs for patients, including those from culturally and linguistically diverse communities would be valuable to synthesise. Implementation efforts could be enhanced through greater knowledge of the resources and care processes needed to support the translation of collected PROMs data into corresponding actions, to the benefit of patients.