Objective To support clinical decision-making and treatment evaluation, outcome measures need to accurately detect changes in patient health. As such, we aim to assess and compare the responsiveness of the v2.0 and v3.0 self- and proxy-reported PROMIS® Item Banks for Mobility, Pain Interference and Upper Extremity in the context of pediatric physical therapy (PPT). Methods Children (8-17 years), and parents (of children aged 5-17 years), completed three pediatric PROMIS® item banks v2.0 (Mobility, Pain Interference, Upper Extremity) while following PPT treatment (baseline) and six months later (follow-up). Eligible participants expected to progress between baseline and follow-up. Responsiveness was evaluated by hypotheses testing for four multimethod approaches: (1) comparison of PROMIS and two legacy instruments; (2) known-group responsiveness, based on physical complaints of the child, and (3) based on focus of PPT intervention; (4) anchor-based method, based on ratings of change.Instruments were deemed responsive if ≥75% of results were in line with hypotheses. To compare v2.0 and v3.0, data reported on v2.0 were collapsed/recalculated to match v3.0. Subsequently, all above hypotheses were investigated for v3.0. Versions were compared on number of hypotheses met. Results Follow-up was completed by 63 children and 80 parents. Sufficient responsiveness was observed for the pediatric Mobility, and pediatric and parent-proxy Pain Interference item banks, in v2.0 and v3.0. The parent-proxy Mobility v2.0 and v3.0 item banks showed 70.0% of results in line with hypotheses. V2.0 and v3.0 did not differ in responsiveness. Due limited reported change, it was not possible to perform the analyses for Upper Extremity. Conclusion The PROMIS pediatric Mobility, pediatric Pain Interference and parent-proxy Pain Interference item banks, in both v2.0 and v3, demonstrate sufficient responsiveness in PPT, supporting their use for reliably capturing change over time in clinical practice. The parent-proxy Mobility v2.0 and v3.0 showed promising indications of responsiveness. Impact statement This study demonstrates that PROMIS pediatric Mobility, as well as the pediatric and parent-proxy Pain Interference, v2.0 and v3.0 item banks are effective tools for detecting change over time in children in pediatric physical therapy. This supports their use in clinical research and practice to enhance treatment evaluation and patient care.

BACKGROUND:Communicative participation is the most important outcome of speech and language therapy. A patient-reported outcome measure (PROM) for children would help capture this outcome. Before this PROM can be developed, it is important to find out what situations children themselves find difficult because of their communication problem. AIMS:The aim of the study was to identify relevant aspects of self-reported communicative participation in children with communication disorders. METHOD AND PROCEDURES:Thirteen children (5-12 years old) with speech disorders, developmental language disorders (DLDs), voice disorders and/or hearing loss were interviewed with semi-structured interviews. Before the interview they kept a diary for 1 week, documenting participation situations that were difficult because of their communication problem. Within 1 week after completing the diaries, the children were interviewed. In addition, children's ability to recall situations and reflect upon communicative participation was observed. The data analysis was conducted using directed content analysis, drawing on an existing theoretical framework. OUTCOMES AND RESULTS:A total of 171 situations were discussed, leading to the identification of 44 concepts, categorized into the following six categories: person, topic, pace, location, moment and mode. Some of the participants had difficulty recalling situations, and reflecting upon communicative participation. This was particularly true for children under 8 years of age (all with DLD) and two children over 8 years of age with DLD and an indication for a school for children with special needs. CONCLUSIONS AND IMPLICATIONS:The 44 concepts provide insight into the difficulties in communicative participation experienced by children themselves. These concepts will be used to develop a PROM to assess children's communicative participation. WHAT THIS PAPER ADDS:What is already known on this subject Communicative participation is the key outcome of speech and language therapy. However, there is a lack of measurement instruments (preferably patient-reported outcome measures, PROMs) to assess communicative participation of children. Additionally, children's own perspectives on their communicative participation, which could inform the development of such an instrument, have not yet been explored. What this paper adds to existing knowledge This study focuses on communicative participation situations as described by children with speech, language and communication needs (SLCN). Based on children's own experiences, 44 concepts describing communicative participation were identified. What are the potential or actual clinical implications of this work? This study enhances a comprehensive understanding of communicative participation from the perspective of children. The identified concepts can already be used in conversations with children about their communicative participation. Additionally, the findings will contribute to the development of an item bank for measuring communicative participation in children with speech, language and communication needs.

INTRODUCTION:How caregiver infant-feeding practices and infant-feeding environment outcomes are measured in obesity prevention intervention trials is crucial to accurately examine intervention effects. This scoping review identified what and how outcome measurement instruments (OMIs) are used to measure eight infant-feeding practice and two feeding environment outcomes that are included in a core outcome set. METHODS:Embase, MEDLINE, CINAHL, and PsycINFO databases were searched from inception to 18.09.23, with an updated search conducted 18.09.25. Eligible trials included infants ≤ 1 year old and at least one infant-feeding practice or infant-feeding environment OMI. Article titles, abstracts, and full texts were screened independently in duplicate. Data were narratively synthesized. RESULTS:Twenty-five trials in 26 articles were included. Questionnaires were the most used OMI (n = 18); individual questions (n = 7), ecological momentary assessment (n = 1), vignettes (n = 1), and ratings of videotaped parent-child interactions (n = 2) were also used. OMIs were predominantly researcher-administered and completed in caregivers' homes. Responsive infant-feeding and pressuring the child to eat were the most examined infant-feeding practices outcomes; the feeding environment was only examined in five trials. Reporting of OMIs often lacked clarity/completeness. CONCLUSION:The findings provide an essential first step to improve the measurement of infant-feeding practices and feeding environment to prevent childhood obesity.

In this study we focused on gaining better interpretation of the PROMIS-Upper-Extremity v2.0 (PROMIS-UE v2.0) T-score scale for measuring upper extremity function in patients with upper extremity injuries (UEIs). This is fundamental in order to clearly understand the clinical relevance of these outcomes. The aim of this study was to identify interpretive thresholds for mild, moderate and severe upper extremity function problems for PROMIS-UE v2.0 T-scores, in patients with UEIs, by performing a vignettes study. A qualitative vignette study, based on the PROMIS-UE v2.0 and its item response theory model. Designed vignettes were tested in pilot expert- and patient focus groups. The vignettes were ranked by participants by functioning level and interpretive threshold values were proposed. This resulted in consensus on the following interpretive thresholds: no problems—mild problems at T-score 45, mild problems—moderate problems at T-score 32.5 and moderate problems—severe problems at T-score 25. The thresholds provide additional information on interpretation of a larger range of the T-score scale, not only the evidently low or high T-scores. This study provides clinically meaningful interpretive thresholds for interpreting PROMIS-UE v2.0 T-scores in patients with UEI, supporting more patient-centred interpretation of treatment outcomes. We recommend using these interpretive thresholds in clinical practice to support the interpretation of patient-reported treatment outcomes and facilitate shared decision-making. Future research with regards to influencing factors on ranking of the vignettes should follow. Upper limb injury is a common major problem for patients and society. Good and fast recovery is important. Recovery can be measured by questionnaires. Previous research showed that questionnaires can be useful in follow-up after injury, to involve the patient in their rehabilitation process and to measure the effect of treatment from the patient’s perspective. This study is needed for better understanding of the scores of a specific upper limb function questionnaire (PROMIS-Upper-Extremity (UE) v2.0). An important step in assessing the clinical relevance of the questionnaire results is to improve the interpretation of the scoring scale of this specific questionnaire (PROMIS-UE v2.0). This study designed hypothetical patients (vignettes) with different levels of function, based on hypothetical answers to selected questions of the PROMIS-UE v2.0. The main goal of this study was to identify thresholds based on the severity of functional problems (no—mild problems, mild—moderate problems, and moderate—severe problems). In a meeting with five patients and six clinicians, the vignettes were ordered from normal (high) to severely impaired (low) upper extremity function and cut-off values for mild, moderate, and severe scores were proposed. This study is a step towards better understanding of the PROMIS-UE v2.0 questionnaire, which will contribute to more patient-centred evaluation of treatment outcomes.

CheckCausesObesity.com (CCO) is a science-based screening and monitoring tool, developed by multidisciplinary experts and consistent with international guidelines. CCO systematically screens for potential obesity causes and contributing factors across seven categories, including lifestyle and medical factors, alongside selected comorbidities as well as anthropometric, demographic and socioeconomic characteristics. CCO supports individualized assessment, treatment and population-level monitoring.

Repigmentation is an essential outcome in vitiligo assessment, yet it remains broadly defined. While perspectives from vitiligo experts have been explored, gaining insights from patients is crucial for a more comprehensive understanding. Ultimately, this could contribute to the development and refinement of core outcome sets for vitiligo. This study aimed to determine aspects of repigmentation patients consider most important. Two surveys and one focus group were conducted, involving 34 patients/patient caregivers and 20 patient representatives. In the surveys, aspects were deemed important if ≥ 70% of participants rated them as such. The focus group used the nominal group technique to rank the five most important self-suggested aspects. The survey results indicate reduction of target lesion surface area, maintenance of repigmentation, and cessation of spread as important. The focus group identified additional aspects, including "time to repigment," "location of lesions," and "color match". This study identified key aspects of repigmentation important to vitiligo patients. While survey results in general aligned with the core domain set for vitiligo clinical trials, the focus group highlighted additional factors. Incorporating these patient-centered priorities into future core outcome sets could enhance the clinical relevance of vitiligo research and ensure outcomes reflect patient perspectives.

Purpose: A preliminary item bank of 133 items from MyCommunication-Adults, a patient-reported outcome measure focusing on communicative participation, underwent content validity testing to ensure its relevance, comprehensibility, and comprehensiveness. The present study aimed to assess the structural validity, construct validity, and reliability of MyCommunication-Adults and develop short forms for clinical use. Method: Adults with communication problems completed the full MyCommunication-Adults item bank, the Dutch Communicative Participation Item Bank (CPIB) short form (measuring communicative participation), and the Patient Reported Outcomes Measurement Information System v2.0 Short Form 8a – Ability to Participate in Social Roles and Activities (PROMIS-APS; measuring general participation). The psychometric properties of MyCommunication-Adults were assessed using confirmatory factor analysis, item response theory analyses, and Pearson correlations. Results: A total of 500 adults with communication problems participated. The final item bank was reduced to 42 items, which demonstrated adequate structural validity (sufficient unidimensionality, Comparative Fit Index = .992, Tucker–Lewis index = .991, root-mean-square error of approximation = .085, no violation of local dependence, and good item fit). Construct validity tests confirmed an expected high correlation (.85) between MyCommunication-Adults and the Dutch CPIB short form as well as a moderate correlation between MyCommunication-Adults and the PROMIS-APS (.57). Two short forms (of nine items for unemployed and 10 items for employed adults) were developed. Analyses indicated a high reliability level for the entire item bank and the two short forms (reliability > .90 over more than 2 SD s in the clinical range). Conclusions: The final 42-item MyCommunication-Adults item bank demonstrated sufficient psychometric properties in a Dutch sample of adults experiencing different communication problems and measures a distinct but related construct to participation. The short forms provide a reliable, valid, and efficient measure of communicative participation in clinical practice.

Background What, when, and how infants are fed in the first year of life can influence their growth and development. Establishing optimal infant feeding behaviours is therefore crucial. However, trials of infant feeding interventions for early childhood obesity prevention have shown inconsistent results, potentially related to heterogeneity in what and how outcomes are measured. This heterogeneity limits evidence synthesis and the evaluation of intervention effectiveness. A Core Outcome Set (COS) including 26 infant feeding outcomes was previously developed to address this issue. The next step is to establish a Core Outcome Measurement Set (COMS) that specifies how these outcomes can be best measured. Evidence from work to date has informed a draft COMS. The primary aim of this study is to finalise the COMS with key stakeholders to support standardised measurement across research, policy, and practice. The secondary aim is to develop implementation strategies to facilitate uptake of the COMS and identify areas for future research. Methods This multi-method study will involve parents/caregivers, healthcare practitioners, researchers, and policymakers. Guided by the Generative Co-Design Framework for Healthcare Innovation, it will include two distinct phases. Phase 1 will consist of online meetings to finalise the COMS including structured voting to reach agreement on measurement recommendations. Phase 2 will involve one online co-design workshop to develop implementation strategies and identify priorities for future research. Both phases will be recorded, transcribed, and analysed using inductive content analysis (Phase 1) and thematic analysis (Phase 2). Participant demographic data and voting results will be analysed descriptively. Findings from both phases will inform the finalised COMS and implementation recommendations. Discussion This study represents the final stage of the Standardised measurement for Childhood Obesity Prevention (SCOPE) Project (www.eiascope.com). Findings from this study will strengthen the design, conduct, and evaluation of interventions to promote optimal infant feeding and growth.

Background/Objective: Evaluating the measurement properties (MPs) of Clinician-Reported Outcome Measures (ClinROMs) is crucial for selecting appropriate instruments for vitiligo assessment. This review critically appraises the existing evidence on the MPs of the ClinROMs used in vitiligo. Methods: A systematic search was conducted in PubMed, Embase, and the Cochrane Library up to 20 February 2024, identifying validated ClinROMs in vitiligo. Studies were included if they provided original data on ClinROM development or analysis, excluding those solely validating other instruments. The assessment of ClinROM quality and risk of bias analysis followed COSMIN guidelines, and ClinROMs with the highest number of sufficiently rated MPs supported by a moderate/high Quality of Evidence (QoE) were identified per construct category (extent/repigmentation and evolution/activity). Results: This review included 22 studies evaluating 12 ClinROMs. For extent/repigmentation, the Vitiligo Area and Severity Index (VASI), Vitiligo Extent Score (VES), and VESplus each had four MPs rated sufficient with a moderate/high QoE. For evolution, the Vitiligo Disease Improvement Score (VDIS) and Vitiligo Disease Activity Score (VDAS) similarly had four MPs rated sufficient with a moderate/high QoE. For activity evaluated based on a single time point, the Vitiligo Signs of Activity Score (VSAS), the only validated ClinROM for visible signs of disease activity, had three MPs rated sufficient with a moderate/high QoE. Conclusions: Six ClinROMs demonstrated the highest quality ratings across two key constructs. However, none underwent a complete evaluation of all their MPs, highlighting the need for further validation and refinement.

INTRODUCTION:Assessment of mobility in orthopaedic trauma patients is commonly performed using the Lower Extremity Functional Assessment (LEFS). Computerized adaptive testing (CAT) utilizing the Patient-Reported Outcomes Measurement Information System (PROMIS) is an advanced method for assessing multiple aspects of patient-reported health and may provide an effective alternative for this purpose. The objective of this study was to correlate and psychometrically compare PROMIS (Mobility (MOB) and Physical Function (PF)) CATs to legacy mobility PROMs (Lower Extremity Functional Scale (LEFS)/ Short Musculoskeletal Function Assessment (SMFA)), and to evaluate factors associated with worse mobility. PATIENTS AND METHODS:In this Cross-sectional study performed in a single Level-I trauma center, 123 patients were recruited who were treated for a lower-extremity fracture (October 1, 2021-July 1, 2023). Correlations (Pearson), known-group validity (Two-sample T test), reliability (Standard error (SE) and Cronbach's alpha), items and completion time, and floor/ceiling effects were assessed. Factors associated with PROMIS-MOB scores were also identified based on multivariable regression analysis. RESULTS:PROMIS-MOB and LEFS/SMFA (0.75/0.86), PROMIS-PF and LEFS/SMFA (0.76/0.84), and both PROMIS-CATs (0.88) were highly correlated. Regarding know-group validity, all PROM scores were worse among patients with moderate-extreme pain. Only PROMIS-CATs scores were worse among older (≥65 years) and short-term follow-up (3≤months) patients. Reliability was very high for PROMIS-MOB (SE2.1), PROMIS-PF (SE2.0), LEFS (alpha0.97) and SMFA (apha0.97). Fewer items were needed for PROMIS-MOB (6) and PROMIS-PF (5) compared to LEFS (20) and SMFA (34). Completion time (mean seconds) of PROMIS-MOB (65) and PROMIS-PF (70) was less compared to LEFS (338) and SMFA (367) (p<0.001). Neither PROMIS-CATs nor LEFS/SMFA exhibited floor/ceiling effects. Advancing age, depression, pain intensity, shorter follow-up were associated with worse PROMIS-MOB scores. CONCLUSION:PROMIS-MOB and PROMIS-PF CATs exhibited a strong correlation with the LEFS and SMFA, indicating that they offer the same information regarding mobility and general physical functioning. Nonetheless, CATs took less time to complete and were better able to detect (subtle) differences between certain groups than traditionally used PROMs. Given that both PROMIS-MOB and PROMIS-PF CATs were also highly correlated, it is questionable whether the more specific mobility CAT provides distinct information in lower extremity fracture patients. LEVELS OF EVIDENCE:Diagnostic study, Level II.

OBJECTIVES:To determine common domains across existing musculoskeletal core outcome sets (COSs). Secondary aims were to assess the development quality of existing musculoskeletal COSs and whether development quality and patient participation was associated with domain selection. STUDY DESIGN AND SETTING:A systematic review of musculoskeletal COSs. We searched six databases from inception until December 2023. Studies were included if they reported on the development of a COS in adults with musculoskeletal conditions for any type of intervention. Quality was assessed using the Core Outcome Set-Standards for Development recommendations (COS-STAD). Data extracted included scope of the COS, health condition, interventions, and outcome domains. We defined a common core domain when present in >66% of all COSs. Analyses were performed using descriptive statistics. RESULTS:We included 51 studies reporting on 40 COSs, 25 were developed for research settings only, five for clinical settings only, and 10 for both. We identified 310 domains consisting of 255 mandatory or compulsory or not specified, 45 important, and 10 for further research. Pain (90%) and physical function (88%) were common core domains. COS development quality varied (range: 4-11 recommendations met); six COS met all standards. Domain definitions were provided in 13 COSs, 27 included patients or representatives in their development process, while nine met all recommendations for the consensus process. COSs involving patients were of higher quality (median: nine vs five for those not involving patients). CONCLUSION:Pain and physical function core domains should be considered for inclusion in all new musculoskeletal COSs. Developers should follow COS development recommendations and include patients or their representatives.

Guillain–Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) are rare immune-mediated disorders of the peripheral nervous system. They cause significant physical and mental symptoms and functional impairments that impact patients’ daily lives. Current treatment does not effectively prevent the occurrence of these residual symptoms and functional limitations. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) are essential tools that capture patients’ perspectives on their own health, which can be used to assess disease impact and evaluate treatment efficacy. The commonly used Inflammatory Rasch-Built Overall Disability Scale (I-RODS) primarily focuses on activity limitations, social participation, but has been noted to have certain clinimetric shortcomings. This highlights the need for a tailored PROM set that comprehensively assesses relevant aspects of health-related quality of life (HRQL) in patients with GBS or CIDP. This prospective mixed-method study consists of a multiphase approach for developing a PROM set in a Dutch adult population with GBS and CIDP. The first phase involves a systematic review and an (online) survey with open-ended questions to identify relevant patient-reported outcomes (PROs), which will be analyzed qualitatively. Subsequently, stakeholder panel meetings will be held with patients and healthcare providers to discuss the identified PROs, including generic and disease specific symptoms and existing suitable PROMs, using the generic Patient Reported Outcomes Measurement Information System (PROMIS) as a basis. Following this, cognitive interviews will be performed to pilot-test a new disease-specific symptom checklist. A Delphi study will then be conducted to achieve consensus on the final PROM set. Finally, a validation study of the selected PROMIS measures and the newly developed disease-specific symptom checklist will be performed. The final phase of the study involves a consensus meeting with the stakeholders to discuss dissemination and implementation strategies for the proposed PROM set. This PROM set is being developed to measure HRQL outcomes relevant for patients with GBS and CIDP. The aim is to develop a tool for clinical practice and research to evaluate the clinical course and effect of treatments from the perspective of patients. Not applicable.

BACKGROUND:The efficient assessment of health outcomes in knee arthroplasty may benefit from universally applicable Patient-Reported Outcomes Measurement Information System computerized adaptive tests (PROMIS CATs), rather than disease-specific measures. This study aimed to evaluate and compare some psychometric properties and the feasibility of various PROMIS CATs (Pain Interference [PROMIS-PI-CAT, v1.1], Physical Function [PROMIS-PF-CAT, v2.0], Mobility [PROMIS-Mob-CAT, v2.0], Ability to Participate in Social Roles and Activities [PROMIS-AS-CAT, v2.0], and Satisfaction with Social Roles and Activities [PROMIS-SS-CAT, v2.0]), with the Knee Injury and Osteoarthritis Outcome Score (KOOS) scales, including the KOOS Physical Function Shortform [KOOS-PS] and KOOS for Joint Replacement [KOOS-JR], and the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) scales. METHODS:Patients (n = 193; mean age [and standard deviation], 64.4 ± 10.1 years; 56% female; mean body mass index, 29.6 ± 5.2 kg/m 2 ) undergoing unilateral or bilateral primary or revision knee arthroplasty at AZ Alma (Eeklo, Belgium) completed the measures 6 weeks before and 6 weeks and 3, 6, and 12 months after surgery. The study evaluated precision (standard error as a percentage of scale range [SE%]), responsiveness (hypothesized correlations and standardized response mean [SRM]), floor and ceiling effects (percentage with the worst and the best scores), and feasibility (completion time and number of items). RESULTS:The PROMIS-PI-CAT and PROMIS-PF-CAT showed better precision at baseline compared with corresponding KOOS/WOMAC scales (SE%, 4.6 versus 7.1/9.3 and 3.6 versus 4.4/4.4), but less precision at 12 months of follow-up (SE%, 6.8 versus 4.8/5.5 and 3.6 versus 3.0/3.0). All PROMIS CATs had good responsiveness (75% to 100% of hypotheses not rejected; SRMs at 12 months: PROMIS-PI-CAT = -1.35 versus KOOS Pain = 1.78 and WOMAC Pain = -1.59; PROMIS-PF-CAT = 1.14 versus KOOS-ADL/WOMAC-PF = 1.43/-1.44; PROMIS-AS-CAT = 0.93 and PROMIS-SS-CAT = 0.93). The PROMIS-PF-CAT did not show ceiling effects at 12 months, unlike the KOOS-ADL/WOMAC-PF (17.5%). PROMIS CATs were more feasible at baseline and follow-ups compared with KOOS and WOMAC scales. CONCLUSIONS:PROMIS-CATs effectively assess health outcomes in knee arthroplasty patients, showing strong psychometric properties and favorable feasibility, supporting their role in value-based health care. LEVEL OF EVIDENCE:Prognostic Level II . See Instructions for Authors for a complete description of levels of evidence.

BACKGROUND:Communicative participation is the primary outcome of speech and language therapy for people with communication disorders. However, there are no instruments that measure communicative participation from the perspective of adolescents and young adults. Moreover, little research has been conducted in which adolescents and young adults with various communication problems were asked about relevant participation situations in which they need to communicate. Before a new measurement instrument can be developed, it is necessary to explore adolescents' and young adults' views on their communicative participation. AIMS:In this study we identified situations in which adolescents and young adults experience barriers participating because of communication problems, as well as situations in which they have no difficulties. In addition, we identified aspects of these situations that influence communicative participation in order to gain a deeper understanding of concepts related to communicative participation. METHODS AND PROCEDURES:This concept elicitation study concerned in-depth interviews on self-experienced communicative participation, in which diaries were used as a sensitizing exercise. Participants were asked to keep a diary for 1-2 weeks in which they described their communicative participation during the day. They were asked to describe situations in which they were not able to participate because of their communication disorder, and to describe situations in which they were able to participate. Within 1 week after completing the diary, participants were invited for an in-depth interview, in which the content of the diary was discussed. OUTCOMES AND RESULTS:Twelve participants were included in this study (7 females, 5 males; 13-27 years) with a variety of communication disorders, including language disorders, speech disorders, hearing loss, or a combination of them. They described a total of 234 situations related to different domains (e.g., communicative participation in school or with friends). Out of these situations, 37 concepts that influence communicative participation were found that were related to the six categories: person (e.g., strangers), topic (e.g., figurative language), pace (e.g., time pressure), location (e.g., school), moment (e.g., energy) and mode (e.g., group conversations). CONCLUSIONS AND IMPLICATIONS:The results of the study provide understanding in adolescents' and young adults' perspectives on communicative participation. The identified situations form the basis for developing an item bank for measuring communicative participation in adolescents and young adults with communication disorders. In upcoming studies, the items will be extensively assessed on the quality aspects of comprehensiveness, comprehensibility and relevance. WHAT THIS PAPER ADDS:What is already known on this subject Communicative participation is the most important outcome of speech and language therapy. However, measurement instruments (preferably patient reported outcome measures, PROMs) to assess communicative participation of adolescents and young adults are scarce. Moreover, perspectives of adolescents and young adults on self-experienced communicative participation, which can lead to the development of a measurement instrument, have not yet been identified. What this paper adds to existing knowledge This study is about the self-experienced communicative participation situations mentioned by adolescents and young adults themselves. It presents 37 concepts describing communicative participation that were identified from communicative participation situations mentioned by adolescents and young adults themselves. What are the potential or actual clinical implications of this work? This study provides more insight into concepts that describe communicative participation from the perspectives of adolescents and young adults. The results will be used to develop an item bank measuring communicative participation in the target population.

Background: Multiple sclerosis (MS) healthcare aims to shift towards patient-centered care, in which empowered patients contribute their values in life and needs in clinical encounters. Patient-reported outcome measures (PROMs) do support the development of person-centered treatment goals and enable communication of patient's needs with healthcare providers. Objective: To evaluate the construct validity of seven Patient-Reported Outcomes Measurement Information System (R) Computer Adaptive Tests (PROMIS CATs) that assess the domains Anxiety, Depression, Pain Interference, Fatigue, Sleep Disturbance, Physical Function, and the Ability to Participate in Social Roles and Activities in MS outpatients, and to compare the average number of items needed to obtain a PROMIS CAT domain score with the number of items in the corresponding regularly used PROMs in MS healthcare and research. Methods: In this cross-sectional study PROMIS CATs and PROMs data from adult people with MS consulting the outpatient clinics of neurology or rehabilitation medicine of the MS Center Amsterdam were analysed. Construct validity of PROMIS CATs was evaluated with hypotheses testing based on predefined Spearman correlations ( >= 0.70 for corresponding and >= 0.50 for related but dissimilar constructs) with HADS anxiety and depression, MSWS-12, MSIS29, EQ5D, CIS20r fatigue, AMSQ-sf. Construct validity was considered adequate when more than 75% of the formulated hypotheses were confirmed. Results: Outcome data from 498 MS outpatients (median age 47.2 years [IQ 37.4-55.2]; 69% females) were available. All correlations with corresponding constructs, except for depression (Spearman's rho = 0.68), were >= 0.70. All correlations with related, but dissimilar constructs were >= 0.50. In total 94% (17/18) of our hypotheses were confirmed. Four personalized PROMIS CAT items were on average needed to complete each PROMIS questionnaire. The traditional PROMs had a fixed number of 78 items in total. Conclusion: All seven PROMIS CATs demonstrated evidence for sufficient construct validity in MS outpatients. In addition, completion of PROMIS CATs required far less items than the commonly used PROMs in MS health care and research.