Measuring the impact and distress of health problems from the individual's perspective: development of the Perceived Impact of Problem Profile (PIPP)

BACKGROUND: The aim of this study was to develop and conduct preliminary validation of the Perceived Impact of Problem Profile (PIPP). Based on the biopsychosocial model of health and functioning, the PIPP was intended as a generic research and clinical measurement tool to assess the impact and distress of health conditions from the individuals' perspective. The ICF classification system was used to guide the structure of the PIPP with subscales included to assess impact on self-care, mobility, participation, relationships and psychological well-being. While the ICF focuses on the classification of objective health and health related status, the PIPP broadens this focus to address the individuals' subjective experience of their health condition. METHODS: An item pool of 23 items assessing both impact and distress on five key domains was generated. These were administered to 169 adults with mobility impairment. Rasch analysis using RUMM2020 was conducted to assess the psychometric properties of each set of items. Preliminary construct validation of the PIPP was performed using the EQ5D. RESULTS: For both the Impact and Distress scales of the PIPP, the five subscales (Self-care, Mobility, Participation, Relationships, and Psychological Well-being) showed adequate psychometric properties, demonstrating fit to the Rasch model. All subscales showed adequate person separation reliability and no evidence of differential item functioning for sex, age, educational level or rural vs urban residence. Preliminary validity testing using the EQ5D items provided support for the subscales. CONCLUSION: This preliminary study, using a sample of adults with mobility impairment, provides support for the psychometric properties of the PIPP as a potential clinical and research measurement tool. The PIPP provides a brief, but comprehensive means to assess the key ICF components, focusing on the individuals' perspective of the impact and distress caused by their health condition. Further validation of its use across different health conditions and varying cultural settings is required

Measuring the impact and distress of osteoarthritis from the patients' perspective

<p>Abstract</p> <p>Background</p> <p>To assess the internal construct validity of the Perceived Impact of Problem Profile (PIPP), a patient based outcome measure based on the International Classification of Functioning, Disability and Health (ICF), which assesses impact and distress, in an osteoarthritis (OA) cohort.</p> <p>Methods</p> <p>A questionnaire comprising the 23-item PIPP, which assesses five domains (mobility, participation, self care, psychological well being and relationships), the Western Ontario McMasters University Osteoarthritis Index (WOMAC), the General Well-Being Index (GWBI), and the Hospital Anxiety and Depression Scale (HADS) was posted to people with clinician diagnosed OA. Assessment of the internal construct validity of the PIPP was undertaken using Rasch analysis performed with RUMM2020 software and concurrent validity through comparator measures.</p> <p>Results</p> <p>Two hundred and fifty-nine participants with OA responded. Analysis of the five individual domains of the PIPP indicated that there was good fit to the Rasch model, with high person separation reliability. One item required removal from the Mobility subscale and the Participation subscale. There were strong correlations between the PIPP Mobility scores and the WOMAC disability and pain subscales (rho = .73 and rho = .68), and between the PIPP Psychological well-being and HADS Depression (rho = .71) and GWBI (rho = -.69). High inter-correlations between the impact and distress subscales for each domain (range rho = .85 to .96), suggested redundancy of the latter.</p> <p>Conclusion</p> <p>This study demonstrates that the PIPP has good psychometric properties in an OA population. The PIPP, using just the impact subscales, provides a brief, reliable and valid means of assessing the impact of OA from the individual's perspective and operationalizing the bio-psychosocial model by the application of a single multi-domain questionnaire.</p

Patient Uncertainty Questionnaire-Rheumatology (PUQ-R): development and validation of a new patient-reported outcome instrument for systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) in a mixed methods study

Background An in-depth qualitative exploration of uncertainty in systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) led to the development of a five-domain conceptual framework of patient uncertainty in these two conditions. The purpose of this study was to develop and evaluate a new patient-reported outcome (PRO) instrument for patient uncertainty in SLE and RA on the basis of this empirically developed conceptual framework. Methods Cognitive debriefing interviews were conducted to pre-test the initial items generated on the basis of the preliminary qualitative exploration of patient uncertainty in SLE and RA. Two separate field tests were conducted in five hospital sites to evaluate the measurement properties of the new instrument; the first to identify and form scales, and the second to assess measurement properties of the final version in an independent sample. Psychometric evaluation was conducted in line with the Rasch Measurement Theory (RMT), examining the extent to which sample to scale targeting was satisfactory, measurement scales were constructed effectively and the sample was measured successfully. Traditional psychometric techniques were also used to provide complementary analyses best understood by clinicians. Results Pre-testing supported the relevance, acceptability and comprehensibility of the initial items. Findings indicated that the Patient Uncertainty Questionnaire for Rheumatology PUQ-R instrument fulfilled the expectations of RMT to a large extent (including person separation index 0.73 – 0.91). The PUQ-R comprises 49 items across five scales; symptoms and flares (14 items), medication (11 items), trust in doctor (8 items), self-management (6 items) and impact (10 items) which further displayed excellent measurement properties as assessed against the traditional psychometric criteria (including Cronbach’s alpha 0.82 – 0.93). Conclusion The PUQ-R has been developed and evaluated specifically for patients with SLE and RA. By quantifying uncertainty, the PUQ-R has the potential to support evidence-based management programmes and research

How does study quality affect the results of a diagnostic meta-analysis?

Background: The use of systematic literature review to inform evidence based practice in diagnostics is rapidly expanding. Although the primary diagnostic literature is extensive, studies are often of low methodological quality or poorly reported. There has been no rigorously evaluated, evidence based tool to assess the methodological quality of diagnostic studies. The primary objective of this study was to determine the extent to which variations in the quality of primary studies impact the results of a diagnostic meta-analysis and whether this differs with diagnostic test type. A secondary objective was to contribute to the evaluation of QUADAS, an evidence-based tool for the assessment of quality in diagnostic accuracy studies. Methods: This study was conducted as part of large systematic review of tests used in the diagnosis and further investigation of urinary tract infection (UTI) in children. All studies included in this review were assessed using QUADAS, an evidence-based tool for the assessment of quality in systematic reviews of diagnostic accuracy studies. The impact of individual components of QUADAS on a summary measure of diagnostic accuracy was investigated using regression analysis. The review divided the diagnosis and further investigation of UTI into the following three clinical stages: diagnosis of UTI, localisation of infection, and further investigation of the UTI. Each stage used different types of diagnostic test, which were considered to involve different quality concerns. Results: Many of the studies included in our review were poorly reported. The proportion of QUADAS items fulfilled was similar for studies in different sections of the review. However, as might be expected, the individual items fulfilled differed between the three clinical stages. Regression analysis found that different items showed a strong association with test performance for the different tests evaluated. These differences were observed both within and between the three clinical stages assessed by the review. The results of regression analyses were also affected by whether or not a weighting (by sample size) was applied. Our analysis was severely limited by the completeness of reporting and the differences between the index tests evaluated and the reference standards used to confirm diagnoses in the primary studies. Few tests were evaluated by sufficient studies to allow meaningful use of meta-analytic pooling and investigation of heterogeneity. This meant that further analysis to investigate heterogeneity could only be undertaken using a subset of studies, and that the findings are open to various interpretations. Conclusion: Further work is needed to investigate the influence of methodological quality on the results of diagnostic meta-analyses. Large data sets of well-reported primary studies are needed to address this question. Without significant improvements in the completeness of reporting of primary studies, progress in this area will be limited

Measuring neurobehavioral functioning in people with traumatic brain injury: Rasch analysis of Neurobehavioral Functioning Inventory

OBJECTIVE: To examine internal construct validity of the Neurobehavioral Functioning Inventory (NFI) by applying Rasch analysis. SETTING: An outpatient rehabilitation program trial in New Zealand employing a goal-setting intervention in people with traumatic brain injury (TBI). PARTICIPANTS: One hundred eight people (mean age = 46 years; 73% male) between 6 months and 5 years post-TBI. DESIGN: Rasch analysis of the NFI (Partial Credit Model). RESULTS: Three NFI subscales were not unidimensional and at least 4 items in each subscale had disordered response categories. Two items showed differential item functioning by age, 1 item by educational attainment, and 2 items were found to misfit the overall construct. These items were excluded from the total score calculation. The revised scale fit the Rasch model and supported the internal construct validity of the NFI. CONCLUSIONS: Current scoring of the NFI subscales for people with TBI in New Zealand does not meet the requirements of the Rasch model. The revised version of NFI can improve the interpretation of scores but should be further tested with people with TBI in other settings

A Rasch analysis of the Person-Centred Climate Questionnaire – staff version

Background: Person-centred care is the bedrock of modern dementia services, yet the evidence-base to support its implementation is not firmly established. Research is hindered by a need for more robust measurement instruments. The 14-item Person-Centred Climate Questionnaire - Staff version (PCQ-S) is one of the most established scales and has promising measurement properties. However, its construction under classical test theory methods leaves question marks over its rigour and the need for evaluation under more modern testing procedures. Methods: The PCQ-S was self-completed by nurses and other care staff working across nursing homes in 35 Swedish municipalities in 2013/14. A Rasch analysis was undertaken in RUMM2030 using a partial credit model suited to the Likert-type items. Three subscales of the PCQ-S were evaluated against common thresholds for overall fit to the Rasch model; ordering of category thresholds; unidimensionality; local dependency; targeting; and Differential Item Functioning. Three subscales were evaluated separately as unidimensional models and then combined as subtests into a single measure. Due to large number of respondents (n = 4381), two random sub-samples were drawn, with a satisfactory model established in the first ('evaluation') and confirmed in the second ('validation'). Final item locations and a table converting raw scores to Rasch-transformed values were created using the full sample. Results: All three subscales had disordered thresholds for some items, which were resolved by collapsing categories. The three subscales fit the assumptions of the Rasch model after the removal of two items, except for subscale 3, where there was evidence of local dependence between two items. By forming subtests, the 3 subscales were combined into a single Rasch model which had satisfactory fit statistics. The Rasch form of the instrument (PCQ-S-R) had an adequate but modest Person Separation Index (&lt; 0.80) and some evidence of mistargeting due to a low number of `difficult-to-endorse' items. Conclusions: The PCQ-S-R has 12 items and can be used as a unidimensional scale with interval level properties, using the nomogram presented within this paper. The scale is reliable but has some inefficiencies due to too few high-end thresholds inhibiting discrimination amongst populations who already perceive that person-centred care is very good in their environment