Implementation of Patient‐Reported Outcomes (PROMs) from specialist pain clinics in England and Wales: Experience from a nationwide study

Abstract

Introduction Evaluating outcomes in routine clinical practice is a significant challenge for specialist pain clinics due to the complexity of interventions provided and the subjective nature of pain. This study reports findings from implementation of Patient Reported Outcomes (PROMs) in pain clinics in England and Wales between 2011 and 2013. Methods A paper‐based questionnaire was administered at a first appointment in participating centres. This assessed quality of life, experience of health care and health care usage with postal follow‐up at 6 and 12 months by the research team. Feasibility was assessed in terms of response rates, completion rates and outcomes. Results Ninety‐one (56%) clinics participated, entering 9,588 patients (19% of those eligible). For responders, there was a 92% item completion rate. The dropout rate was high, 46% and 19% returned questions at 6 and 12 months, respectively. Quality of life at baseline was low, with a mean EQ5D‐3L Time Trade Off value of 0.32. Amongst responders at 12 months, 92% continued to experience significant pain. For those with planned discharges 30% achieved the Minimal Important Change for quality of life. Nonetheless, 70% reported positive experiences of care. Conclusions Patients attending UK pain clinics report an extraordinarily poor quality of life and difficulty with understanding their condition. Problems with PROMs implementation included initial recruitment, follow‐up response rates, classification systems and benchmarking. Successful implementation should include use of electronic data capture, feedback and focus on gradual improvement. To achieve this would require extended periods of funding. Significance No nationwide evaluation of the effectiveness of specialist pain clinics had previously been attempted. Comparison of patient outcomes from services enables improvement. This work provides a platform to improve methods of routine PROMs capture in pain clinics, measure clinical effectiveness and identify areas for potential research.

Characterizing patient-reported outcomes in veterans with cirrhosis

“…Similarly, despite including Veterans from across the country, this study was underpowered to assess clinic-level performance or control for clinic-level care in this study given the small number of Veterans from each site. Moreover, while the 40% response rate is similar to the range of 19-46% reported in other large, national, mailed surveys [42][43][44], it is unclear whether this biased the findings, either via a "healthy participant bias" or, conversely, due to receiving more responses from dissatisfied or symptomatic patients. Another limitation of the study was the inability to assess health-behaviors, such as adherence, which may mediate other associations and could be of interest in future studies.…”

The core minimum dataset for measuring pain outcomes in pain services across Scotland. Developing and testing a brief multi-dimensional questionnaire

“…The frequency of missing data in the CMD questionnaire at the baseline ranged from 12.6% to 13.8%, which although substantial, is comparable to that in other questionnaires. 11 , 13 The CMD questionnaire is therefore a feasible instrument for collecting these pain-related data, but consideration needs to be given to maximising completion. Methods advocated in previous studies include focussing on resolving technical issues so that clinicians can access databases for data entry with minimal disruption and the supervision of patients completing forms.…”

“…However, the later may introduce response bias as the most enthusiastic clinics may be less likely to have incomplete data. 11 , 13 Further work should be conducted to explore the reasons for the missing data in the CMD questionnaire and potential solutions to ensure the risks of incomplete data are mitigated.…”

“…50 Although the single-item scales used in the questionnaire are part of larger validated instruments (CPG, PHQ-2 and SF-36), their use individually and combined with other items has not previously been validated; nor have the larger instruments been used in previous questionnaires and databases designed to assess pain services. In contrast, the instruments used to validate the CMD questionnaire (HADS and BPI) have been used in previous studies 10,13,14,16 , although we note that there is uncertainty around the use of HADS for separate assessments of depression and anxiety. 51 However, the main objective of this study was to develop a validated national data collection tool which is brief, easy to administer and less burdensome to both patients and clinicians when compared with longer standardised questionnaires which are currently used in clinical practice, but often not entered into electronic records in a way that allows them to be used at the service level, rather than just the individual.…”

“…pain and quality of life) 10 and a more extensive set of patient reported outcome measure (PROMs) questionnaires. 12 , 13 However, both studies suffered from low recruitment, low patient response, data entry difficulties and incompatibility with healthcare IT systems. The Faculty of Pain Medicine and British Pain Society commissioned an extensive review of commonly used instruments to be used in specialist pain services.…”