The National Psoriasis Foundation surveyed a random, stratified sample of individuals with psoriatic disease in the United States to determine the prevalence of an unacceptable psoriatic arthritis (PsA) symptom state and its effect on depression and social participation. Acceptable and unacceptable levels of PsA were defined using established cutoff points (acceptable ≤4 vs unacceptable >4) on the Psoriatic Arthritis Impact of Disease 9. Psoriasis severity was defined by body surface area: mild < 3%, moderate-severe ≥ 3%. Depression was assessed utilizing the Patient Health Questionnaire 2. Social participation was assessed by the Patient Reported Outcome Information Measurement System Ability to Participate in Social Role and Activities-SF4a. The analysis cohort comprised 801 patients with PsA. Unacceptable disease activity level (Psoriatic Arthritis Impact of Disease >4) was reported by 59.6% of participants. After adjusting for age, sex, and psoriasis severity, individuals with likely depression (OR = 0.014, P < .001) and those with limited ability to participate in social roles and activities (OR = 0.05, P < .001) were less likely to experience acceptable levels of PsA activity. Ultimately, the results demonstrated that most United States patients with PsA have unacceptable levels of disease activity, which is associated with increased prevalence of depression and limitations in social participation.

BACKGROUND: Health-related quality of life (HRQL) has become an important outcome parameter in cardiology. The MOS 36-ltem Short-Form Health Survey (SF-36) and the PROMIS-29 are two widely used generic measures providing composite HRQL scores. The domains of the SF-36, a well-established instrument utilized for several decades, can be aggregated to physical (PCS) and mental (MCS) component summary scores. Alternative scoring algorithms for correlated component scores (PCSc and MCSc) have also been suggested. The PROMIS-29 is a newer but increasingly used HRQL measure. Analogous to the SF-36, physical and mental health summary scores can be derived from PROMIS-29 domain scores, based on a correlated factor solution. So far, scores from the PROMIS-29 are not directly comparable to SF-36 results, complicating the aggregation of research findings. Thus, our aim was to provide algorithms to convert PROMIS-29 data to well-established SF-36 component summary scores.
METHODS: Data from n = 662 participants of the Berlin Long-term Observation of Vascular Events (BeLOVE) study were used to estimate linear regression models with either PROMIS-29 domain scores or aggregated PROMIS-29 physical/mental health summary scores as predictors and SF-36 physical/mental component summary scores as outcomes. Data from a subsequent assessment point (n = 259) were used to evaluate the agreement between empirical and predicted SF-36 scores.
RESULTS: PROMIS-29 domain scores as well as PROMIS-29 health summary scores showed high predictive value for PCS, PCSc, and MCSc (R2 ≥ 70%), and moderate predictive value for MCS (R2 = 57% and R2 = 40%, respectively). After applying the regression coefficients to new data, empirical and predicted SF-36 component summary scores were highly correlated (r > 0.8) for most models. Mean differences between empirical and predicted scores were negligible (|SMD|<0.1).
CONCLUSIONS: This study provides easy-to-apply algorithms to convert PROMIS-29 data to well-established SF-36 physical and mental component summary scores in a cardiovascular population. Applied to new data, the agreement between empirical and predicted SF-36 scores was high. However, for SF-36 mental component summary scores, considerably better predictions were found under the correlated (MCSc) than under the original factor model (MCS). Additionally, as a pertinent byproduct, our study confirmed construct validity of the relatively new PROMIS-29 health summary scores in cardiology patients.

Patient-reported knee-related rating scores and scales are widely used in reporting the clinical outcomes of anterior cruciate ligament (ACL) surgery. Understanding the psychometric properties of such measures is vital to recognizing the limitations that such measures may confer. The aim of this study was to review the available evidence as to the psychometric properties of patient-reported outcome measures (PROMs) used in ACL surgery. Eleven studies were identified, the majority being prospective cohort studies. Eight English, ACL-specific patient-reported outcome measures were identified and evaluated: Lysholm score, Tegner Activity Scale (TAS), Cincinnati score, ACL-Quality of Life (QOL) score, International Knee Documentation Committee (IKDC) Subjective Knee Form (SKF), Knee Injury and Osteoarthritis Outcome Score (KOOS)-ACL score, and ACL-Return to Sport Injury (RSI) scale. Only the Lysholm score, ACL-QOL, IKDC SKF, and ACL-RSI were evaluated for internal consistency, having an acceptable Cronbach\'s α (α>0.70). Most of the scoring systems were assessed for test-retest reliability, with four of them (Lysholm score, TAS, Cincinnati score, and IKDC SKF) having acceptable intraclass correlation coefficient (ICC) values (ICC > 0.70). Criterion validity was assessed for most measures with a good correlation with the IKDC. Effect sizes and standardized response means were large for three instruments that measured responsiveness (Lysholm score, TAS, and Cincinnati score) and moderate for one (ACL-QOL). Evidence is stronger and more robust for the Lysholm score, TAS, ACL-QOL, and IKDC SKF. However, there is variation in their psychometric properties as well as the aspect of knee-related health they are assessing. Hence, none can be universally applicable to all patients with ACL injuries. Recognizing these parameters is vital when choosing which instrument to use in reporting the outcomes of ACL injury or ACL surgery studies.

BACKGROUND: Osteogenesis imperfecta (OI) is a group of inherited connective tissue disorders of varying severity characterized by bone fragility. The primary objective of this international multidisciplinary collaboration initiative was to reach a consensus for a standardized set of clinician and patient-reported outcome measures, as well as associated measuring instruments for dental care of individuals with OI, based on the aspects considered important by both experts and patients. This project is a subsequent to the Key4OI project initiated by the Care4BrittleBones foundation which aims to develop a standard set of outcome measures covering a large domain of factors affecting quality of life for people with OI. An international team of experts comprising orthodontists, pediatric dentists, oral and maxillofacial surgeons, and prosthetic dentists used a modified Delphi consensus process to select clinician-reported outcome measures (CROMs) and patient-reported outcome measures (PROMs) to evaluate oral health in individuals with OI. Important domains were identified through a literature review and by professional expertise (both CROMs and PROMs). In three focus groups of individuals with OI, important and relevant issues regarding dental health were identified. The input from the focus groups was used as the basis for the final set of outcome measures: the selected issues were attributed to relevant CROMs and, when appropriate, matched with validated questionnaires to establish the final PROMs which represented best the specific oral health-related concerns of individuals with OI.
RESULTS: Consensus was reached on selected CROMs and PROMs for a standard set of outcome measures and measuring instruments of oral health in individuals with OI.
CONCLUSIONS: Our project resulted in consensus statements for standardization oral health PROMs and CROMs in individuals with OI. This outcome set can improve the standard of care by incorporating recommendations of professionals involved in dental care of individuals with OI. Further, it can facilitate research and international research co-operation. In addition, the significant contribution of the focus groups highlights the relevance of dental and oral health-related problems of individuals with OI.

Novel surgical treatments for painful neuromas are increasingly used, but determining which provides the greatest benefit has been difficult due to the inconsistent use of outcome measures. We mapped the current literature of outcome measures used to evaluate peripheral nerve surgery for the management of symptomatic neuromas in patients who underwent an adult-acquired upper extremity amputation (UEA). Medline, Embase, Cochrane, and CINAHL were searched for primary research written in the English language from inception to February 2023. The search yielded 1137 articles, of which 35 were included for final analysis. Studies varied in their assessment of pain, health-related quality of life (HRQOL), neurotrophic measures, psychological and sensorimotor function, highlighting a consensus on crucial domains but also revealing significant heterogeneity in the use and application of outcome measures among primary studies. Our findings highlight the need to establish common standards that reflect the best evidence and unique needs of the UEA population. This includes developing a core outcome set, utilizing multi-center trials, and maintaining flexibility to adapt to ongoing advancements in patient-reported outcome measures (PROMs) research.

OBJECTIVE: Somatosensory evoked potentials (SSEPs) are described as a supportive tool to diagnose chronic inflammatory demyelinating polyradiculoneuropathy (CIDP); however, there is a lack of studies determining the effectiveness of SSEPs in monitoring the clinical course of individuals with this condition. The aims of this study are to evaluate the utility of SSEPs in monitoring patients with CIDP and to assess their association with clinical outcomes following immunomodulatory therapy.
METHODS: This was a single-center retrospective observational study that included patients who met European Federation of Neurological Societies and Peripheral Nerve Society criteria for CIDP between 2018 and 2023. SSEPs were performed at diagnosis and during follow-up after the start of immunomodulatory treatment. Fisher\'s exact test was employed to assess the association between clinical improvement and SSEP improvement.
RESULTS: Eighteen patients were included in the study. Ten patients had a typical CIDP pattern and 11 were male. In 17, SSEPs were abnormal prior to the start of immunomodulatory treatment. In patients who showed clinical improvement with immunomodulatory therapy, we observed that 15/17 had partial or complete improvement in SSEPs. Patients who showed no clinical improvement with first-line treatment exhibited worsening SSEPs. There was a significant association between clinical and SSEPs improvement (p = 0.009).
CONCLUSIONS: We observed a positive association between improvement in SSEPs and clinical improvement in patients with CIDP. Our data suggest that SSEPs may be useful for monitoring the clinical course of patients with CIDP, but additional, larger studies are needed.

UNASSIGNED: Health Economic Evaluations (HEEs) calculate a cost-benefit ratio using utility and effectiveness instruments. It is unknown whether existing instruments measure the items of the Prosthetic Interventions Core Outcome Set (PI-COS) that represent the benefits most important to lower-limb prosthesis users and funders. Comparing the content of existing instruments against the PI-COS will support instrument selection for future prosthetic HEEs.
UNASSIGNED: Utility and effectiveness instruments used to evaluate prosthetic interventions were identified and their International Classification of Functioning, Disability and Health framework (ICF) linking results were extracted. Content of each instrument was compared to the PI-COS through three metrics: content density, content diversity and bandwidth.
UNASSIGNED: Of the 130 utility and effectiveness instruments, 24 had previously been linked to the ICF. The instrument with the greatest bandwidth (i.e., broadest content coverage of the PI-COS) was the SF-36 given it linked to 6 of the 14 items of the PI-COS. Combining PROMIS subscales and short-forms allow measurement of a greater range of the PI-COS items.
UNASSIGNED: There is no perfect fit instrument providing coverage of the PI-COS using the metrics of content density, content diversity and bandwidth. The PROMIS instrument may provide increase coverage of the PI-COS in future HEEs.
Existing utility and effectiveness instruments provide varying levels of coverage of the Prosthetic Interventions Core Outcome Set (PI-COS), which describes the outcomes most important to prosthetic users and funders.Rehabilitation professionals can use the content mapping in this study to guide the selection of an instrument that best measures the benefits of a lower-limb prosthetic intervention given the purpose of study.Future health economic evaluations of lower-limb prosthetic interventions should use utility and effectiveness instruments that provide the greatest coverage of the PI-COS and as such, we recommend the 42 questions of the combined PROMIS-29 + 2 and the PROMIS Physical Function with Mobility Aid short-form.

OBJECTIVE: To develop and validate the Oral Lichen Planus-Disease Activity Scale (OLP-DAS) for assessing overall disease activity of OLP.
METHODS: The OLP-DAS was created by refining the Thongprasom criteria, incorporating inputs from the literature and expert review, and integrating pain assessment. Content validity was evaluated in a virtual meeting with 8 Oral Medicine specialists. Reliability and validity of the final version were examined. Seventeen OLP subjects were assessed for disease activity by 10 investigators using the OLP-DAS, Oral Disease Severity Score (ODSS), OLP-Investigator Global Assessment (OLP-IGA), and Reticular-Erythema-Ulcerative (REU) scale. Convergent validity was assessed by rating 160 OLP subjects using the OLP-DAS, ODSS, and OLP-IGA. Inter-rater and intra-rater reliability, along with convergent validity, were analyzed using intraclass correlation coefficients (ICCs) and Spearman\'s rank correlation coefficients (rs).
RESULTS: The final OLP-DAS achieved excellent content validity indices. Inter-rater and intra-rater ICCs for total OLP-DAS scores were 0.93 and 0.96, respectively. Total OLP-DAS scores exhibited strong positive correlations with the ODSS and OLP-IGA (rs = 0.94 and rs = 0.76; P < 0.001, respectively). The OLP Severity Index (OLP-SI), a component of the OLP-DAS, showed very strong positive correlations with OLP disease activity parameters of the ODSS (rs = 0.90; P < 0.001).
CONCLUSIONS: The OLP-DAS is a valid and reliable clinician-reported outcome measure (CROM) for evaluating OLP disease activity.
CONCLUSIONS: The OLP-DAS, as a standardized CROM for OLP, is valuable for both routine clinical assessments and research applications.

OBJECTIVE: Despite high prevalence and burden of pelvic floor dysfunctions (PFD), there is a limited number of scales assessing knowledge of pelvic floor health (PFH), and no studies comparing their psychometric or feasibility properties. The study aimed both to investigate the psychometric properties and feasibility of Incontinence Quiz (IQ), Prolapse and Incontinence Knowledge Questionnaire (PIKQ) and Pelvic Floor Health Knowledge Questionnaire (PFHKQ), and to compare level of PFH knowledge in women with and without PFD.
METHODS: In this prospective cross-sectional study, a total of 150 women were included. After recording physical-sociodemographic characteristics, obstetric histories and menstrual status, Pelvic Floor Distress Inventory-20 and Female Sexual Function Index were administered to classify them into study groups as women with and without PFD. Their PFH knowledge was assessed using IQ, PIKQ and PFHKQ, which were filled twice with one week interval for the test-retest purpose. The scores, reliability, validity, ceiling-floor effects and feasibility of the knowledge scales were compared with each other, and between the study groups.
RESULTS: IQ, PIKQ, and PFHKQ scores of women with and without PFD were similar. Based on response patterns to items, PFHKQ had the highest internal consistency followed by PIKQ and IQ. The PIKQ was the most stable scale across the total sample and in the PFD group. The PFHKQ had the highest ICC value in women without PFD. There was a strong correlation between the total scores of knowledge scales in both groups. Scores of knowledge and symptom scales were not significantly correlated. IQ was completed in the shortest time, and was easier to complete than PFHKQ. Only the diagnosis/treatment subscale of PFHKQ had a ceiling effect.
CONCLUSIONS: It was concluded that PFH knowledge of women with and without PFD were at a low-moderate level and similar to each other; IQ, PIKQ and PFHKQ were reliable, valid and feasible scales, which can be used in measuring knowledge level about PFH.

UNASSIGNED: Measurement of freezing of gait (FOG) relies on the sensitivity and reliability of tasks to provoke FOG. It is currently unclear which tasks provide the best outcomes and how medication state plays into this.
UNASSIGNED: To establish the sensitivity and test-retest reliability of various FOG-provoking tasks for presence and severity of FOG, with (ON) and without (OFF) dopaminergic medication.
UNASSIGNED: FOG-presence and percentage time frozen (% TF) were derived from video annotations of a home-based FOG-provoking protocol performed in OFF and ON. This included: the four meter walk (4MW), Timed Up and Go (TUG) single (ST) and dual task (DT), 360° turns in ST and DT, a doorway condition, and a personalized condition. Sensitivity was tested at baseline in 63 definite freezers. Test-retest reliability was evaluated over 5 weeks in 26 freezers.
UNASSIGNED: Sensitivity and test-retest reliability were highest for 360° turns and higher in OFF than ON. Test-retest intra-class correlation coefficients of % TF varied between 0.63-0.90 in OFF and 0.18-0.87 in ON, and minimal detectable changes (MDCs) were high. The optimal protocol included TUG ST, 360° turns ST, 360° turns DT and a doorway condition, provoking FOG in all freezers in OFF and 91.9% in ON and this could be done reliably in 95.8% (OFF) and 84.0% (ON) of the sample. Combining OFF and ON further improved outcomes.
UNASSIGNED: The highest sensitivity and reliability was achieved with a multi-trigger protocol performed in OFF + ON. However, the high MDCs for % TF underscore the need for further optimization of FOG measurement.