Patient-reported Measures Research Articles

Associations between changes in leg extensor muscle power and physical function after supervised exercise in patients with hip osteoarthritis. Secondary analysis from the hip booster trial

ObjectiveTo investigate associations between changes in leg extensor muscle power of the affected limb (ΔLEP) and changes in physical function after 12 weeks of progressive resistance training (PRT) or neuromuscular exercise (NEMEX) in patients with hip osteoarthritis. DesignSecondary analyses of a randomized controlled trial. From 160 participants enrolled in the clinical trial and cluster randomized to PRT (n ​= ​82) or NEMEX (n ​= ​78), a total of 147 (92%) had complete follow-up data and were included in the analyses. Simple linear and multivariate linear regression models estimated the crude and adjusted associations between ΔLEP normalized to body weight (watt/kg) and changes in performance-based and patient-reported measures of physical function. ResultsAdjusted estimates [95% confidence intervals] showed associations between ΔLEP (watt/kg) and changes in 30-s chair stand test (β: 2.34 [1.33; 3.35], R2: 0.13), 9-step timed stair climb test (β: −1.47 [-2.09; −0.85], R2: 0.38), 40-m fast paced walking test (β: −2.20 [-3.30; −1.11], R2: 0.09), Activities of Daily Life function (β: 8.63 [3.16; 14.10], R2: 0.23) and Sport and Recreation function (β: 10.57 [2.32; 18.82], R2: 0.21) subscales from the Hip disability and Osteoarthritis Outcomes Score. Group allocation to PRT did not lead to greater regression coefficients than in NEMEX. ConclusionsChanges in leg extensor muscle power after supervised exercise are consistently associated with changes in physical function across performance-based and patient-reported measures in patients with hip osteoarthritis. These associations seem to be independent of allocation to PRT or NEMEX.

Psychometric evaluation of the Dutch version of the patient-reported experience measure for addiction treatment (PREMAT-NL).

Patient-centred care has become increasingly important in health care. Patient-reported experience measures (PREM) are used to measure patient experiences in health care, but the availability of psychometrically validated PREMs is limited. The Patient Reported Experience Measure in Addiction Treatment (PREMAT) is a PREM developed with extensive service user input to assess the experiences of people in residential addiction treatment services. In this study we aimed to evaluate the psychometric properties of the Dutch translation of the PREMAT, the PREMAT-NL. Ninety-three participants completed the PREMAT-NL approximately 45 days after starting addiction treatment as part of a naturalistic prospective multi-centre study in Belgium. We examined the factorial structure using principal component analysis with Promax oblique rotation and assessed the internal consistencies of the subscales and total score using Cronbach's α. Additionally, we explored the relationship of PREMAT-NL scores with demographic and clinical variables. The PREMAT-NL had a four-factor structure, with good internal consistencies of the subscales (Cronbach's α >0.70) and excellent internal consistency of the total score (Cronbach's α = 0.94). The PREMAT-NL total score was negatively skewed, and four score categories were proposed based on z-scores. PREMAT-NL scores correlated weakly with the type of treatment centre (r = 0.21, p < 0.05) and with previously received treatment for addiction (r = -0.25, p < 0.05). Although the factor structure and thus the appropriate use of subscales need further investigation, the findings of this study support the use of the PREMAT-NL total score as a valid and reliable PREM to evaluate residential addiction treatment services.

Postoperative Supine Sleeping Position Following Total Knee Arthroplasty Decreases Knee Flexion Contractures

Background Total knee arthroplasty (TKA) is an orthopaedic operation that improves quality of life and reduces pain in patients with disabling arthritis of the knee. One commonly recognized postoperative complication is flexion contracture of the knee. While early physical therapy and range of motion (ROM) exercises have helped improve ROM postoperatively, flexion contractures still remain a significant postoperative complication of TKA. This study evaluated postoperative sleeping position and its effect on terminal knee extension and ROM following primary TKA. We hypothesized that patients who slept in the supine position would achieve earlier knee extension and ROM when compared to those in the lateral recumbent position. Methods A total of 150 consecutive primary total knee arthroplasties (TKAs) were conducted by a single surgeon (JMC). Prospective data collection included assessments of preoperative range of motion (ROM), postoperative ROM, patient-reported outcome measures, and sleeping positions. Functional outcomes and patient-reported measures were compared between pre- and postoperative phases, as well as across different sleeping position groups. Results Postoperative follow up was a mean of 29.6 days. Mean postoperative terminal extension ROM at one month was 2.98 degrees in the supine group versus 6.03 degrees in the lateral group (P &lt; 0.001). Overall, there was significant improvement in patient reported outcome measures (WOMAC, Oxford, and pain) after surgery, but no difference existed between sleeping groups. For knee extension, a two-way ANOVA revealed that there was a statistically significant interaction between the effects of surgery and sleep position (p = 0.0053). Conclusions Our results demonstrate that sleeping position does affect initial postoperative knee terminal extension; however, there is no effect on patient reported outcomes. We found a statistically significant difference in extension when comparing patients in the supine versus lateral group. Patients who slept in the lateral position lacked 6.03 degrees of extension which is greater than the 5 degrees threshold needed for normal gait mechanics. Conversely, those in the supine group only lacked 2.98 degrees of extension, allowing for normal gait mechanics. This study identifies an easy, effective means of increasing patient knee range of motion following TKA.

A Preliminary Examination of a Novel Telepractice Screening Protocol for Poststroke Aphasia.

The delivery of telepractice interventions for people with poststroke aphasia has been found effective and feasible compared to traditional, in-person interventions; however, telepractice assessments, particularly screening protocols, which may foster convenient access to aphasia diagnostic services, have received limited examination within the aphasia literature. Therefore, the purpose of this study was to examine a novel telepractice screening protocol for people with poststroke aphasia that assesses both language and extralinguistic cognitive abilities via both performance-based and patient-reported measures. Twenty-one participants with previously diagnosed poststroke aphasia completed the telepractice administration of the Frenchay Aphasia Screening Test (FAST), the Aphasia Impact Questionnaire-21 (AIQ-21), the Oxford Cognitive Screen (OCS), and the Cognitive-Communication Checklist for Acquired Brain Injury (CCCABI). Care partners of the participants completed the Communicative Effectiveness Index (CETI). After the telepractice session, each participant completed a feasibility questionnaire to rate their overall experience. All participants screened as having aphasia. Pearson correlation analyses yielded a strong positive relationship between OCS and FAST scores (r = .74), a strong relationship between OCS and CCCABI scores (r = -.71), and a moderate relationship between FAST and AIQ-21 scores (r = -.35). Moderate relationships were noted between the performance-based measures and the CETI (r = .30). The overall feasibility of telepractice administration was rated positively by each participant. No significant relationships were found between the feasibility responses and participant characteristics. Overall, the telepractice screening protocol yielded an effective and feasible way to identify poststroke aphasia. Similar to in-person administration of screening measures, it was more difficult to identify milder levels of aphasia severity. Future research should examine whether this telescreening protocol can identify poststroke aphasia within the broader stroke population.

Initial Outcomes following Fresh Meniscus Allograft Transplantation in the Knee.

Based on recent evidence-based advances in meniscus allograft transplantation (MAT), fresh (viable) meniscus allografts have a potential for mitigating key risk factors associated with MAT failure, and preclinical and clinical data have verified the safety of fresh meniscus allografts as well as possible efficacy advantages compared to fresh-frozen meniscus allografts. The objective of this study was to prospectively assess clinical outcomes for the initial cohort of patients undergoing MAT using fresh meniscus allografts at our center. Patients who were prospectively enrolled in a dedicated registry were included for analyses when they had undergone primary MAT using a fresh meniscus allograft for treatment of medial and/or lateral meniscus deficiency with at least 1-year follow-up data recorded. Forty-five patients with a mean final follow-up of 47.8 months (range = 12-90) were analyzed. Mean patient age was 30.7 years (range = 15-60), mean BMI was 29.7 kg/m2 (range = 19-48), and 14 patients (31%) were female. In total, 28 medial, 13 lateral, and 4 combined medial and lateral MATs with 23 concurrent ligament reconstructions and 2 concurrent osteotomies were included. No local or systemic adverse events or complications related to MAT were reported for any patient in the study. Treatment success rate for all patients combined was 91.1% with 3 patients requiring MAT revision and 1 patient requiring arthroplasty. Treatment failures occurred 8 to 34 months after MAT and all involved the medial meniscus. None of the variables assessed were significantly different between treatment success versus treatment failure cohorts. Taken together, the data suggest that the use of fresh (viable) meniscus allografts can be considered a safe and effective option for medial and lateral meniscus allograft transplantation. When transplanted using double bone plug suspensory fixation with meniscotibial ligament reconstruction, fresh MATs were associated with a 91% success rate, absence of local or systemic adverse events or complications, and statistically significant and clinically meaningful improvements in patient-reported measures of pain and function at a mean of 4 years postoperatively.

Evaluating cancer patient-reported experience measures against health literacy best practices.

Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care. To assess adherence to best practice literacy principles regarding readability and understandability of commonly used cancer PREMs, three validated readability calculators and a validated instrument were utilized. To better understand how PREMs were developed, data about survey items, patient involvement, and expert consultation were collected. Finally, the Picker framework was used to evaluate the comprehensiveness of PREMs against principles of patient-centered care. Thirty-five PREMs studies met inclusion criteria for the study. The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, range = 8.2-11.2) with best practice recommendation being a grade 6 reading grade level. Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, range = 46-93%, with optimal score of greater than 80%). The mean number of items across PREMs was 49 (SD = 31, range = 13-136). Recommendations for the number of items to include in a questionnaire is 25-30 items. Most PREMs (n = 33, 94.3%) asked ≥ 1 double-barreled question. All PREMs addressed ≥ 2 patient-centered care principles. Cancer PREMs included in this study did not meet evidence-informed thresholds for readability and understandability. As such, it is possible that there may be gaps in how we understand the care experiences of low health literacy populations. Future development of PREMs should engage patients with low health literacy to ensure their perspectives are accurately captured and that PREMs are designed to meet the needs of all patients.

Association of cannabis use with patient-reported pain measures among adults with chronic pain in US states with medical cannabis programs

IntroductionMost Americans live in a state that has legalized cannabis as a medical treatment for pain, but it is unclear how chronic pain intensity relates to cannabis use. Our objective...

Impact of anti-rheumatic treatment on the individual components of the ACR composite score in patients with rheumatoid arthritis: real-world data.

Standard criteria for measuring treatment efficacy in patients with rheumatoid arthritis (RA) include American College of Rheumatology (ACR) response rates, which require meeting a threshold of ≥20/50/70% improvement in several physician- and patient-reported measures. We aimed to evaluate the impact of csDMARDs, TNF inhibitors (TNFi), and tofacitinib (TOFA) on ACR components in real-life practice. Clinical data of RA patients with a CDAI >10 at the time they started a treatment were pooled from two registries: Ontario Best Practices Research Initiative (OBRI) and RHUMADATA. Endpoints included proportions of patients achieving: ACR20/50/70 responses, ≥20/50/70% improvements and mean percentage improvement in individual ACR components at Month 6. We also adjusted for potential confounders to compare impact of these medications on outcomes of interest. A total of 669 patients were included (csDMARD, n=157, TNFi, n=252; TOFA, n=260). An overall higher proportion in all three-medication groups achieved ≥20/50/70% improvement in primary ACR components vs. secondary components. Among secondary components, ≥20/50/70% improvement rates were numerically highest for PhGA and lowest for HAQ-DI and pain. Among ACR20/50/70 responders for all medications, the mean percentage improvement was more than 80% for primary components, and ranged from 30% to 80% for secondary components. A significantly lower proportion of patients in TNFi group achieved to at least 50% improvement in pain compared to TOFA after adjusting. In this real-world practice, physician-reported measures contribute slightly more to overall ACR20/50/70 responses. Pain was the most important factor in achieving an ACR50 TOFA users, possibly reflecting the different effects of JAKi on pain.

The Psychometric Performance of the Kansas City Cardiomyopathy Questionnaire-12 in Symptomatic Obstructive Hypertrophic Cardiomyopathy

A primary goal of treating patients with obstructive hypertrophic cardiomyopathy (oHCM) is to improve their symptoms, function, and quality of life. While the psychometric properties of the 23-item Kansas City Cardiomyopathy Questionnaire (KCCQ-23) have been described in oHCM, they have not been assessed for the shorter 12-item version (KCCQ-12), which is increasingly used in clinical practice. Using data from the EXPLORER-HCM trial, the psychometric properties of the KCCQ-12 were evaluated. The KCCQ-12 domain and summary scores had moderate correlations with the most relevant clinical (New York Heart Association class, exercise duration, peak oxygen consumption) and patient-reported measures (EQ-5D-5L visual analog scale, Work Productivity and Activity Impairment [WPAI] questionnaire, and Hypertrophic Cardiomyopathy Symptom Questionnaire [HCMSQ]). KCCQ-12 domain scores had strong internal consistency and test-retest reliability, demonstrated significant and proportional changes with different magnitudes of clinical change (assessed with the patient global impression of change and patient impression of severity), and demonstrated close equivalence to the KCCQ-23 scores. The KCCQ-12 demonstrated good psychometric performance for patients with oHCM, comparable to that of the KCCQ-23, supporting its use in clinical practice to care for patients with oHCM.

Sex Differences in Patient-Reported Depression Following Vascular Surgery Procedures

IntroductionFemale patients frequently experience worse clinical outcomes than male patients after undergoing vascular surgery procedures. However, it is unclear whether these sex-based disparities also impact mental health outcomes. This study was designed to investigate sex differences in patient-reported outcome measures of depression for patients undergoing vascular surgery. MethodsWe retrospectively analyzed 107 patients (73 males and 34 females) who underwent vascular surgery procedures between January 2016 and April 2023. These patients completed a Patient-Reported Outcome Measurement Information System (PROMIS) Item Bank v1.0-Depression assessment 90 d before surgery and at least once after surgery. After stratifying patients by sex, we analyzed changes in PROMIS depression scores using a multiple mixed-effects linear regression model. Then, logistic regression was used to compare the proportion of patients who achieved a clinically meaningful difference in PROMIS depression score within 15 mo after surgery. ResultsThere was no significant difference between female and male patients among rates of complications, length of hospital stay, or rates of nonhome discharge. However, female sex was associated with significantly improved PROMIS depression scores after surgery compared to male sex (P = 0.034). Furthermore, female patients were over 3-fold more likely than male patients to reach the minimal clinically important difference threshold for improvement in PROMIS depression scores (odds ratio 4.66, 95% confidence interval 1.39-15.61). ConclusionsThese results suggest that female sex is associated with improved patient-reported measures of depression after undergoing vascular surgery. Clinicians should consider these mental health benefits when evaluating female patients for vascular interventions.

Digital photometric analysis as a non-invasive method to determine gingival phenotype: A comparative study

ObjectiveIdentification of periodontal phenotype is critical in clinical practice. Thick and thin tissues respond differently to inflammation, and trauma. It significantly influences the outcomes of restorative treatment, regenerative therapy, and success of implants and periodontal surgery. Periodontal phenotype can be assessed via invasive or non-invasive methods. This study aimed to establish the reliability of non-invasive methods in determining gingival phenotypes in comparison with validated methods. MethodsThis preapproved cross-sectional observational study was conducted at Batterjee Medical College in Saudi Arabia. The participants were conveniently sampled based on the inclusion criteria. The clinical study utilized Colorvue® biotype probes to evaluate gingival tissue phenotype in the region of interest, intraoral digital scanner (IOS) (iTero® scanner), and digital photography. Densitometric acquisition of photographs and intraoral scans was performed using Adobe Photoshop to quantify three-dimensional color measurements expressed in Delta E values (ΔE). Furthermore, patient-reported experience measures (PREMs) were used to evaluate anxiety and pain perception. Values of p < 0.05 were considered statistically significant. ResultsThe analysis of color difference values (ΔE) revealed significant variations in color perception across methods for the thin, medium and very thick groups, indicating perceptible color differences (p < 0.001). The assessment of anxiety levels indicated a statistically significant decrease in stress levels in favor of the IOS method for the medium phenotype. Furthermore, perceived pain was significantly lower with the IOS method than with the probing method for all phenotypes. ConclusionDensitometric analysis of standardized clinical photographs and intraoral scans of the marginal gingiva offers a promising, non-invasive, less stressful, and virtually non-painful method of periodontal phenotype evaluation with reliable numerical outputs. Furthermore, these data may be used to feed AI systems, where machines can learn to recognize color differences and possibly deduce phenotype assessments.

Prevalence and Factors Associated With High-Impact Chronic Pain in Knee Osteoarthritis: The Johnston County Health Study

Pain is a hallmark symptom of knee osteoarthritis (KOA), yet intensity and severity vary widely among individuals. There is a knowledge gap in understanding key characteristics of high-impact chronic pain (HICP) within the context of KOA. Therefore, our first purpose was to examine the prevalence of HICP in a cohort of individuals with radiographic evidence of KOA, and our second purpose was to assess patient-level factors associated with HICP. Data from the Johnston County Health Study were used to compare those with and without HICP. Variables included sociodemographic factors, clinical factors, health care use, and psychosocial distress. HICP status was classified with Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Interference and Physical Function measures. The results indicated that 15.5% (48/310) of participants were classified as having HICP when the PROMIS-Pain Interference cutoff score was used, while 21.2% (66/310) were classified as having HICP with a PROMIS-Physical Function cutoff score. Multivariable analyses indicated that HICP was consistently characterized by increased kinesiophobia and somatization, regardless of PROMIS measure used for HICP status. A secondary insight was that HICP was not consistently characterized by sociodemographic and clinical variables, as these findings were dependent on PROMIS measure used. These findings could be used to develop intervention approaches specific to individuals with KOA and to inform future investigations of sociodemographic and clinical factors associated with HICP. PerspectiveThese findings provide additional information on the characterization of HICP for individuals with KOA. There was consistency in psychosocial factors associated with HICP, while sociodemographic and clinical factors varied based on how HICP status was defined.

Patient Demographic Factors Impact KOOS JR Response Rates for Total Knee Arthroplasty Patients.

The Knee injury and Osteoarthritis Outcome Score for Joint Replacement (KOOS JR) is a validated patient-reported measure for assessing pain and function following total knee arthroplasty (TKA). This study investigates how patient demographic factors (i.e., age, sex, and race) correlate with KOOS JR response rates. This was a retrospective cohort study of adult, English-speaking patients who underwent primary TKA between 2017 and 2023 at an academic institution. KOOS JR completion status-complete or incomplete-was recorded within 90 days postoperatively. Standard statistical analyses were performed to assess KOOS JR completion against demographic factors. Among 2,883 total patients, 70.2% had complete and 29.8% had incomplete KOOS JR questionnaires. Complete status (all p < 0.01) was associated with patients aged 60 to 79 (71.8%), white race (77.6%), Medicare (81.7%), marriage (76.8%), and the highest income quartile (75.7%). Incomplete status (all p < 0.001) was associated with patients aged 18 to 59 (64.4%), Medicaid (82.4%), and lower income quartiles (41.6% first quartile, 36.8% third quartile). Multiple patient demographic factors may affect KOOS JR completion rates; patients who are older, white, and of higher socioeconomic status are more likely to participate. Addressing underrepresented groups is important to improve the utility and generalizability of the KOOS JR.

53: Patient-reported outcomes and experience measures with online adaptive radiotherapy on MR-Linac

53: Patient-reported outcomes and experience measures with online adaptive radiotherapy on MR-Linac

Development and Psychometric Analysis of a Patient-Reported Measure of Diagnostic Excellence for Emergency and Urgent Care Settings.

Emergency and urgent care settings face challenges with routinely obtaining performance feedback related to diagnostic care. Patients and their care partners provide an important perspective on the diagnostic process and outcome of care in these settings. We sought to develop and test psychometric properties of Patient-Report to IMprove Diagnostic Excellence in Emergency Department settings (PRIME-ED), a measure of patient-reported diagnostic excellence in these care settings. We developed PRIME-ED based on literature review, expert feedback, and cognitive testing. To assess psychometric properties, we surveyed AmeriSpeak, a probability-based panel that provides sample coverage of approximately 97% of the U.S. household population, in February 2022 to adult patients, or their care partners, who had presented to an emergency department or urgent care facility within the last 30 days. Respondents rated their agreement on a 5-point Likert scale with each of 17 statements across multiple domains of patient-reported diagnostic excellence. Demographics, visit characteristics, and a subset of the Emergency Department Consumer Assessment of Healthcare Providers & Systems were also collected. We conducted psychometric testing for reliability and validity. Over a thousand (n = 1116) national panelists completed the PRIME-ED survey, of which 58.7% were patients and 40.9% were care partners; 49.6% received care at an emergency department and 49.9% at an urgent care facility. Responses had high internal consistency within 3 patient-reported diagnostic excellence domain groupings: diagnostic process (Cronbach's alpha 0.94), accuracy of diagnosis (0.93), and communication of diagnosis (0.94). Domain groupings were significantly correlated with concurrent Emergency Department Consumer Assessment of Healthcare Providers & Systems items. Factor analyses substantiated 3 domain groupings. PRIME-ED has potential as a tool for capturing patient-reported diagnostic excellence in emergency and urgent care.

Subjective and objective measures of cognitive function are correlated in persons with Post-COVID-19 Condition: a secondary analysis of a Randomized Controlled Trial.

It remains unclear whether subjective and objective measures of cognitive function in Post COVID-19 Condition (PCC) are correlated. The extent of correlation has mechanistic and clinical implications. This post-hoc analysis of a randomized, double-blind, placebo-controlled clinical trial contains baseline data of subjective and objective measures of cognition in a rigorously characterized cohort living with PCC. Herein, we evaluated the association between subjective and objective condition function, as measured by the Perceived Deficits Questionnaire, 20-item (PDQ-20) and the Digit Symbol Substitution Test (DSST) and Trails Making Test (TMT)-A/B, respectively. A total of 152 participants comprised the baseline sample. Due to missing data, our statistical analyses included 150 for self-reported PDQ-20, 147 individuals for combined DSST-measured cognitive function (composite z-score of the Pen/Paper plus Online CogState Version, NcombinedDSST), 71 for in-person DSST-measured cognitive function (Pen/Paper Version), 70 for TMT-A-measured cognitive function, and 70 for TMT-B-measured cognitive function. After adjusting for age, sex, and education, PDQ-20 was significantly correlated with pen-and-paper DSST (β = -0.003, p = 0.002) and TMT-B (β = 0.003, p = 0.008) scores, but not with TMT-A scores (β = -0.001, p = 0.751). Overall, a statistically significant correlation was observed between subjective and objective cognitive functions. Clinicians providing care for individuals with PCC who have subjective cognitive function complaints may consider taking a measurement-based approach to cognition at the point of care that focuses exclusively on patient-reported measures.

Feasibility of individualized home exercise programs for patients with head and neck cancer-study protocol and first results of a multicentre single-arm intervention trial (OSHO #94).

Patients with head and neck cancer (PwHNC) benefit from targeted exercise interventions: symptom relief, compensation for dysfunction, improvement in quality of life (QoL). Data on acceptance physical interventions in PwHNC are rare. The 'OSHO #94' trial investigates the short- and medium-term effects of individualized home exercise in PwHNC on QoL, physical activity and functionality. The study includes a feasibility phase (proof of concept) in order to evaluate the acceptance. Here we present the study protocol as well as the feasibility results. This prospective, multicentre, single-arm intervention study includes PwHNC ≥18 years of age in aftercare or palliative care with stable remission under immunotherapy. The study opened in January 01, 2021, with estimated completion by December 31, 2024. The PwHNC receive an individualized home exercise program consisting of mobilization, coordination, strengthening and stretching exercises. This should be carried out at least three times a week over 12 weeks for 15 to 30 minutes, supplemented by aerobic training two to three times a week for 30 minutes (intervention). Once weekly telephone calls with a physiotherapist are performed. Subsequently, there is a 12-week follow-up (FU) without exercise specifications/contact. Outcomes are measured before and after the intervention and following the FU. Primary outcome of the feasibility phase (n = 25) was the determination of the dropout rate during the intervention with a termination cut off if more than 30% PwHNC withdrew premature. The primary outcome of the OSHO #94' trial (N = 53) is the change in global QoL score from pre- to post-intervention (EORTC QLQ-C30). Secondary outcomes include clinical and patient-reported measures, training details as well as functional diagnostic data (e.g. level of physical activity, training frequency, flexibility, fall risk and aerobic performance). 25 PwHNC were enrolled onto the feasibility cohort. Only16% (4/25 patients) did not complete the study. Therefore, recruitment of PwHNC was continued. The dropout rate was adjusted from 30% (N = 60) to 20% (N = 53, calculated sample size n = 42 PwHNC and 20% (n = 11) to dropout). Individualized home exercise programs in PwHNC in aftercare seem feasible. Consequently, the aim is now to evaluate the short and medium-term effects of individualized home exercise.

Trajectories of behavior and social cognition in behavioral variant frontotemporal dementia and primary psychiatric disorders: A call for better operationalization of socioemotional changes.

Behavioral variant frontotemporal dementia (bvFTD) and primary psychiatric disorders (PPD), such as mood, psychotic, and autism spectrum disorders, share similar clinical characteristics of behavior and social cognition. Better understanding of clinical progression in bvFTD and PPD is essential for adequate disease monitoring and trial design. In this longitudinal study (N = 89), patients with bvFTD and PPD with at least one follow-up assessment were included from the Social Brain Project of the Alzheimer Center Amsterdam. Behavioral change and social cognitive decline were assessed via informant-rated questionnaires (Cambridge Behavioral Inventory-Revised, Frontal Behavioral Inventory [FBI], Stereotypy Rating Inventory, Frontotemporal Dementia Rating Scale, Revised Self-Monitoring Scale [RSMS]-caregiver) and patient assessment (Ekman 60-Faces Test, RSMS-patient, Emotional Contagion Scale). Clinical trajectories (median = 1.4 years, interquartile range = 1.0-2.2) were examined using linear mixed models. In a subsample, associations with baseline serum neurofilament light (sNfL) were examined. At baseline, behavioral and social cognitive symptoms were similar between diagnosis groups, except for poorer emotion recognition in bvFTD. Over time, behavioral symptoms worsened in bvFTD, whereas most measures remained stable and the FBI improved in PPD. Regarding social cognition, emotion recognition and caregiver-reported socioemotional sensitivity worsened in bvFTD and remained stable in PPD. Patient-reported social cognitive measures did not change over time. Higher sNfL was associated with faster behavioral change. Trajectories of behavior and social cognition differentiate bvFTD from PPD, provided that social cognition is not patient-reported. Therefore, we stress the need to optimize longitudinal social cognitive assessment in bvFTD. sNfL may be a useful prognostic marker of behavioral progression in neuropsychiatric populations.

Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.

Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.

Factors associated with patient-reported mouth opening activity limitations in individuals with persistent intra-articular temporomandibular disorders: A cross-sectional study exploring physical and self-reported outcomes

BackgroundIndividuals living with intra-articular temporomandibular disorders (IA-TMDs) often report limitations with mouth opening activities. While clinical measures such as active range of motion (AROM) and movement quality are often used to assess mouth opening function, it is unclear if and how these relate to patient-reported limitations and whether other factors such as kinesiophobia influence mouth opening activities in those with IA-TMDs. ObjectivesCompare clinical measures of mouth opening function in those with IA-TMDs to asymptomatic controls. In those with an IA/TMD, explore relationships between patient-reported mouth opening limitations, and mouth opening function and kinesiophobia. DesignCross-sectional study. MethodClinical mouth opening function (AROM, movement quality, pain on movement/10, stiffness on movement/10) was compared between groups (n = 30 IA-TMD, n = 30 controls). Within the IA-TMD group, correlations between patient-reported mouth opening limitations (Patient specific functional scale), kinesiophobia (Tampa Scale for Kinesiophobia for Temporomandibular Disorders) and clinical measures of mouth opening function were explored. ResultsImpairments in AROM (-4 mm, p = 0.04, d = 0.5), movement quality (p < 0.01, φ = 0.6), pain on movement (p < 0.01, d = 0.8) and stiffness on movement (p < 0.01, d = 1.6) were observed in the IA-TMD group compared to controls. Patient-reported mouth opening limitations and kinesiophobia were significantly correlated (r = −0.48, p < 0.01); no correlation was found between patient-reported limitations and clinical mouth opening measures (r < 0.3, p > 0.05). ConclusionsMouth opening function is impaired in IA-TMD. However, kinesiophobia appears more related to patient-reported mouth opening limitations than clinical impairments. Consideration of clinical, kinesiophobia and patient-reported limitation measures are necessary to direct management of IA-TMD in those presenting for care.