Patient-reported Measurement Instruments Research Articles

Evidence of the content validity, acceptability, and feasibility of a new Patient-Reported Impact of Dermatological Diseases measure.

The Global Research on the Impact of Dermatological Diseases (GRIDD) team is developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure of the impact of dermatological conditions on the patient's life, in partnership with patients. To develop PRIDD, we conducted a systematic review, followed by a qualitative interview study with 68 patients worldwide and subsequently a global Delphi survey of 1,154 patients to ensure PRIDD items were meaningful and important to patients. To pilot test PRIDD with patients with dermatological conditions, focusing on its content validity (comprehensiveness, comprehensibility, and relevance), acceptability, and feasibility. We conducted a theory-led qualitative study using the Three-Step Test-Interview method of cognitive interviewing. Three rounds of semi-structured interviews were conducted online. Adults (≥ 18 years) living with a dermatological condition and who spoke English sufficiently to take part in the interview were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) global membership network. The topic guide met the gold-standard COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) standards for cognitive interviewing. Analysis followed the thematic analytical model of cognitive interviewing. Twelve people (58% male) representing six dermatological conditions from four countries participated. Overall, patients found PRIDD to be comprehensible, comprehensive, relevant, acceptable, and feasible. Participants were able to discern the conceptual framework domains from the items. Feedback resulted in: the recall period being extended from 1 week to 1 month; removal of the 'not relevant' response option; and changes to the instructions and item ordering and wording to improve clarity and increase respondents' confidence in their ability to respond. These evidence-based adjustments resulted in a 26-item version of PRIDD. This study met the gold-standard COSMIN criteria for the pilot testing of health measurement instruments. The data triangulated our previous findings, in particular the conceptual framework of impact. Our findings illuminate how patients understand and respond to PRIDD and other patient-reported measurement instruments. The results of comprehensibility, comprehensiveness, relevance, acceptability, and feasibility of PRIDD provide evidence of content validity from the target population. The next step in the development and validation of PRIDD is psychometric testing.

Use and perceived added value of patient-reported measurement instruments by physiotherapists treating acute low back pain: a survey study among Dutch physiotherapists

BackgroundThis study aims to explore (i) physiotherapists’ current use in daily practice of patient-reported measurement instruments (screening tools and questionnaires) for patients with acute low back pain (LBP), (ii) the underlying reasons for using these instruments, (iii) their perceived influence on clinical decision-making, and (iv) the association with physiotherapist characteristics (gender, physiotherapy experience, LBP experience, overall e-health affinity).MethodsSurvey study among Dutch physiotherapists in a primary care setting. A sample of 650 physiotherapists recruited from LBP-related and regional primary care networks received the survey between November 2018 and January 2019, of which 85 (13%) completed it.ResultsNearly all responding physiotherapists (98%) reported using screening tools or other measurement instruments in cases of acute LBP; the Quebec Back Pain Disability Scale (64%) and the STarT Back Screening Tool (61%) are used most frequently. These instruments are primarily used to evaluate treatment effect (53%) or assess symptoms (51%); only 35% of the respondents mentioned a prognostic purpose. Almost three-quarters (72%) reported that the instrument only minimally impacted their clinical decision-making in cases of acute LBP.ConclusionsOur survey indicates that physiotherapists frequently use patient-reported measurement instruments in cases of acute LBP, but mostly for non-prognostic reasons. Moreover, physiotherapists seem to feel that current instruments have limited added value for clinical decision-making. Possibly, a new measurement instrument (e.g., screening tool) needs to be developed that does fit the physiotherapist’s needs and preferences. Our findings also suggest that physiotherapist may need to be more critical about which measurement instrument they use and for which purpose.

Validation of the Ankle Osteoarthritis Scale Instrument for Preoperative Evaluation of End-Stage Ankle Arthritis Patients Using Item Response Theory

Significant ankle arthritis results in functional limitations and patient morbidity. There is a need to measure symptoms and the impact of interventions on patient's quality of life using valid and reliable patient-reported measurement instruments. The objective of this research was to validate the Ankle Osteoarthritis Scale instrument in the preoperative setting using factor analysis, item response theory, and differential item function methods. This research is based on secondary analysis of patients scheduled for ankle arthrodesis or total ankle replacement in Vancouver, Canada. Participants completed the instrument between September 2014 and August 2017. Item response theory was used to estimate item difficulty and discrimination parameters, controlling for study participants' underlying level of ankle function. Differential item function was examined for sex, age group, and surgery. There were 88 participants. Modification indices suggested that item 10, "walking around the house," would better fit the pain domain rather than the disability domain. Items in the pain domain displayed a range of discrimination and difficulty. Items in the disability domain exhibited a range of discrimination, though the disability domain had low difficulty. Differential item functioning for sex, age group, and ankle arthrodesis or total ankle replacement appeared to be ignorable. This evaluation of the Ankle Osteoarthritis Scale found the instrument to be a strong measure of the effect of pain and dysfunction among patients with end-stage ankle arthritis, even when removing items 7 and 8, supporting its prior use in numerous clinical studies. Level II, prospective comparative study.

Defining a core outcome set for adolescent and young adult patients with a spinal deformity

Background and purpose — Routine outcome measurement has been shown to improve performance in several fields of healthcare. National spine surgery registries have been initiated in 5 Nordic countries. However, there is no agreement on which outcomes are essential to measure for adolescent and young adult patients with a spinal deformity. The aim of this study was to develop a core outcome set (COS) that will facilitate benchmarking within and between the 5 countries of the Nordic Spinal Deformity Society (NSDS) and other registries worldwide.Material and methods — From August 2015 to September 2016, 7 representatives (panelists) of the national spinal surgery registries from each of the NSDS countries participated in a modified Delphi study. With a systematic literature review as a basis and the International Classification of Functioning, Disability and Health framework as guidance, 4 consensus rounds were held. Consensus was defined as agreement between at least 5 of the 7 representatives. Data were analyzed qualitatively and quantitatively.Results — Consensus was reached on the inclusion of 13 core outcome domains: “satisfaction with overall outcome of surgery”, “satisfaction with cosmetic result of surgery”, “pain interference”, physical functioning”, “health-related quality of life”, “recreation and leisure”, “pulmonary fatigue”, “change in deformity”, “self-image”, “pain intensity”, “physical function”, “complications”, and “re-operation”. Panelists agreed that the SRS-22r, EQ-5D, and a pulmonary fatigue questionnaire (yet to be developed) are the most appropriate set of patient-reported measurement instruments that cover these outcome domains.Interpretation — We have identified a COS for a large subgroup of spinal deformity patients for implementation and validation in the NSDS countries. This is the first study to further develop a COS in a global perspective.