Application Of Patient-reported Outcome Measures Research Articles

The Pediatric International Knee Documentation Committee (Pedi-IKDC) Subjective Knee Evaluation Form: Normative Data

Background: Children are participating in sports at an increasingly younger age, which has contributed to an increased incidence of knee injuries among this population. Because of increased interest in the application of patient-reported outcome measures in orthopaedic surgery to evaluate treatment results, numerous knee outcome scores, including the International Knee Documentation Committee Subjective Form (IKDC), have been used to evaluate the knee. Although the IKDC has been validated only in adults, it is also being used for children because of a lack of appropriate outcome scores in the pediatric population. To address this concern, a pediatric version of the IKDC (Pedi-IKDC) was developed and evaluated for reliability, validity, and responsiveness. However, normative data for the Pedi-IKDC have not been established. Purpose: We aimed to aid the interpretation of Pedi-IKDC scores by characterizing normative data in children and adolescents and to validate the Pedi-IKDC by examining differences in scores among children who had a history of knee surgery or limited activity compared with those who did not. Study Design: Cross-sectional study; Level of evidence, 3. Methods: We conducted a cross-sectional survey of 2000 children and adolescents aged 10 to 18 years living in the United States, who were recruited by ORC International to obtain equal numbers of participants by sex and by integer age group. Participants were asked to complete the Pedi-IKDC for 1 study-designated “index” knee (right or left) and to provide demographic data and information on their knee surgery history and recent (4-week) activity limitations. Raw Pedi-IKDC total scores were rescaled to a 0 to 100 scale. We used nonparametric Wilcoxon or Kruskal-Wallis tests to compare subgroup scores, and we used the van Elteren test to adjust for age. Unadjusted and adjusted P values were similar, and only unadjusted values are reported. Results: The number of respondents (N = 2000) was uniform with respect to age and sex, with 11% in each age represented (10-18 years). Fifty percent of respondents were female. Forty-nine states plus Washington, DC, were represented. In addition, 68% and 86% of respondents identified themselves as white and non-Hispanic, respectively. Seven percent of respondents (n = 136) respondents reported having prior surgery in 1 or both knees; 4% of these surgeries (n = 79) were in the index knee. The Pedi-IKDC score distribution was skewed left (mean ± SD score, 86.7 ± 16.8; median, 94.6) and 34% of scores reached the ceiling value of 100. Participants who reported prior surgery or limited activity in the index knee had median Pedi-IKDC scores that were approximately 25 points lower than participants without these histories (P < .0001 for both comparisons). In contrast, although it was statistically significant, the variation by age (P = .02), race (P = .02), ethnicity (P = .01), and level of sports/exercise participation (P = .04) was much smaller (all ranges of median scores <4.5). There were no significant differences in scores in terms of respondent sex or geographic region. Conclusion: Normative Pedi-IKDC scores were determined in this study. The strong association between Pedi-IKDC scores and prior knee surgery as well as recent activity limitations in the index knee can be used to evaluate clinical outcomes and supports the construct validity of the Pedi-IKDC. There was a large ceiling effect, with 34% of scores at the maximum value of 100. The lack of a sex-based effect and the minor variation with age both simplify the interpretation and use of the Pedi-IKDC. Therefore, Pedi-IKDC score distributions can provide assumptions for use in sample size or power calculations for research.

Is Real-Time Feedback of Burn-Specific Patient-Reported Outcome Measures in Clinical Settings Practical and Useful? A Pilot Study Implementing the Young Adult Burn Outcome Questionnaire.

Long-term follow-up care of survivors after burn injuries can potentially be improved by the application of patient-reported outcome measures (PROMs). PROMs can inform clinical decision-making and foster communication between the patient and provider. There are no previous reports using real-time, burn-specific PROMs in clinical practice to track and benchmark burn recovery over time. This study examines the feasibility of a computerized, burn-specific PROM, the Young Adult Burn Outcome Questionnaire (YABOQ), with real-time benchmarking feedback in a burn outpatient practice. The YABOQ was redesigned for formatting and presentation purposes using images and transcribed to a computerized format. The redesigned questionnaire was administered to young adult burn survivors (ages 19-30 years, 1-24 months from injury) via an ipad platform in the office before outpatient visits. A report including recovery curves benchmarked to a nonburned relatively healthy age-matched population and to patients with similar injuries was produced for the domains of physical function and social function limited by appearance. A copy of the domain reports as well as a complete copy of the patient's responses to all domain questions was provided for use during the clinical visit. Patients and clinicians completed satisfaction surveys at the conclusion of the visit. Free-text responses, included in the satisfaction surveys, were treated as qualitative data adding contextual information about the assessment of feasibility. Eleven patients and their providers completed the study for 12 clinical visits. All patients found the ipad survey and report "easy" or "very easy" to use. In nine instances, patients "agreed" or "strongly agreed" that it helped them communicate their situation to their doctor/nurse practitioner. Patients "agreed" or "strongly agreed" that the report helped them understand their course of recovery in 10 visits. In 11 visits, the patients "agreed" or "strongly agreed" that they would recommend this feedback to others. Qualitative comments included: "it helped organize my thoughts of recovery," "it opened lines of communication with the doctor," "it showed me how far I have come, and how far I need to go," and "it raised questions I would not have thought of." Only four of 12 provider surveys agreed that it helped them understand a patient's condition; however, in two visits, the providers stated that it helped identify a pertinent clinical issue. During two visits, providers stated that a treatment plan was discussed or recommended based on the survey results. Separately, qualitative comments from the providers included "survey was not sensitive enough to identify that this patient needed surgery for their scars." This is the first report describing clinical use of a burn-specific patient reported outcome measure. Real-time feedback using the ipad YABOQ was well received for the most part by the clinicians and burn survivors in the outpatient clinic setting. The information provided by the reports can be tested in a future randomized controlled clinical study evaluating impacts on physician decisions.

Journeying through Dementia, a community-based self-management intervention for people aged 65years and over: a feasibility study to inform a future trial.

BackgroundA study to determine the feasibility of conducting a future population-based trial into a self-management intervention for community-living adults with early stage dementia included evaluation of intervention content and modes of delivery, staffing requirements, recruitment methods and the utility and usability of patient reported outcomes.MethodsParticipants identified through memory clinics in one city took part in an intervention called ‘Journeying through Dementia’. The 12-week programme incorporating four individual sessions with one of the facilitators encourages participants to engage in discussion and activities related to health and well-being positioning them as the expert enabling long-term behavioural change. Participants (n = 10) and their nominated carers (n = 7) were all asked to complete selected outcomes at baseline, 8 weeks (participants only) and post intervention and invited to comment on their usability. All participants and carers were qualitatively interviewed before intervention delivery about their expectations and participants; nominated carers and facilitators were all interviewed after cessation about their experiences.ResultsThe manualised intervention and modes of delivery proved acceptable to participants and carers. Reported benefits included increased confidence and self-efficacy, engagement in new or lapsed activities and re-engagement in fun and friendships. People with dementia and carers were able to self-complete all outcome measures, but time required to complete the measures is a key factor. Strategies for recruitment need to include direct contact within 24–48 h post invitation to the study. Analysis of data on the primary outcome did not reveal any trends. Facilitators found the training and support to be appropriate and helpful.ConclusionsThe tailored intervention reportedly met the needs of all participants. The study confirmed the need for careful identification and application of patient-reported outcome measures. Outcomes to measure some dimensions of reported benefit are not available.Trial registrationCurrent Controlled Trials ISRCTN67209155.

Application of patient-reported outcome measures (PROMs) data to estimate cost-effectiveness of hernia surgery in England

To demonstrate potential uses of nationally collected patient-reported outcome measures (PROMs) data to estimate cost-effectiveness of hernia surgery. Cost-utility model populated with national PROMs, National Reference Cost and Hospital Episodes Statistics data. Hospitals in England that provided elective inguinal hernia repair surgery for NHS patients between 1 April 2009 and 31 March 2010. Patients >18 years undergoing NHS-funded elective hernia surgery in English hospitals who completed PROMs questionnaires. Change in quality-adjusted life year (QALY) following surgery; cost per QALY of surgery by acute provider hospital; health gain and cost per QALY by surgery type received (laparoscopic or open hernia repair). The casemix-adjusted, discounted (at 3.5%) and degraded (over 25 years) mean change in QALYs following elective hernia repair surgery is 0.826 (95% CI, 0.793-0.859) compared to a counterfactual of no treatment. Patients undergoing laparoscopic surgery show a significantly greater gain in health-related quality of life (EQ-5D index change, 0.0915; 95% CI, 0.0850-0.0979) with an estimated gain of 0.923 QALYS (95% CI, 0.859-0.988) compared to those having open repair (EQ-5D index change, 0.0806; 95% CI, 0.0771-0.0841) at 0.817 QALYS (95% CI, 0.782-0.852). The average cost of hernia surgery in England is £1554, representing a mean cost per QALY of £1881. The mean cost of laparoscopic and open hernia surgery is equivocal (£1421 vs. £1426 respectively) but laparoscopies appear to offer higher cost-utility at £1540 per QALY, compared to £1746 per QALY for open surgery. Routine PROMs data derived from NHS patients could be usefully analyzed to estimate health outcomes and cost-effectiveness of interventions to inform decision-making. This analysis suggests elective hernia surgery offers value-for-money, and laparoscopic repair is more clinically effective and generates higher cost-utility than open surgery.

Does providing feedback on patient-reported outcomes to healthcare professionals result in better outcomes for patients? A systematic review

To assess the impact of providing healthcare professionals with feedback on patient-reported outcome measures (PROMs). This is a systematic review including controlled studies investigating the effectiveness of PROMs feedback, specifically examining the impact at a group-level and a patient-level. Only one study provided feedback at a group-level as a measure of professional performance, which found no intervention effect. At a patient-level, sixteen studies were identified and only one study found an overall significant difference in the PROM score. However, an additional six studies found a significant result favouring the intervention group for a particular subgroup or domain. The studies which demonstrated the greatest impact primarily used PROMs as a management tool in an outpatient setting on a specialised patient population. In contrast, there was weak evidence supporting with the use of PROMs as a screening tool. The studies which found a positive effect had a lower quality score on average. The effectiveness of PROMs feedback seems to be related to the function of the PROM. However, the evidence regarding the impact of PROMs feedback on patient outcomes is weak, and methodological issues with studies are frequent. The use of PROMs as a performance measure is not well investigated. Future research should focus on the appropriate application of PROMs by testing specific hypothesis related to cause and effect. Qualitative research is required to provide a deeper understanding of the practical issues surrounding the implementation of PROMs and the methodological issues associated with the effective use of the information.

The applications of PROs in clinical practice: what are they, do they work, and why?

Precisely defining the different applications of patient-reported outcome measures (PROs) in clinical practice can be difficult. This is because the intervention is complex and varies amongst different studies in terms of the type of PRO used, how the PRO is fed back, and to whom it is fed back. A theory-driven approach is used to describe six different applications of PROs in clinical practice. The evidence for the impact of these applications on the process and outcomes of care are summarised. Possible explanations for the limited impact of PROs on patient management are then discussed and directions for future research are highlighted. The applications of PROs in clinical practice include screening tools, monitoring tools, as a method of promoting patient-centred care, as a decision aid, as a method of facilitating communication amongst multidisciplinary teams (MDTs), and as a means of monitoring the quality of patient care. Evidence from randomised controlled trials suggests that the use of PROs in clinical practice is valuable in improving the discussion and detection of HRQoL problems but has less of an impact on how clinicians manage patient problems or on subsequent patient outcomes. Many of the reasons for this may lie in the ways in which PROs fit (or do not fit) into the routine ways in which patients and clinicians communicate with each other, how clinicians make decisions, and how healthcare as a whole is organised. Future research needs to identify ways in with PROs can be better incorporated into the routine care of patients by combining qualitative and quantitative methods and adopting appropriate trial designs.