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Orthoses are often prescribed to improve mobility of people with chronic health conditions that affect lower limb function. Patient-reported survey instruments can be used to measure aspects of mobility that cannot be easily assessed in clinical or research settings. A population-specific item bank could be designed to measure aspects of mobility that are most important to lower limb orthosis users and evaluate the effects of orthoses.The aim of this research was to develop items for a new survey instrument to measure mobility of lower limb orthosis users.A qualitative item review process included focus groups with lower limb orthosis users, an item generation and reduction process that involved a stakeholder advisory panel, and cognitive interviews with target respondents.Focus groups were held by video conferencing. Cognitive interviews were conducted by telephone.Focus group and cognitive interview participants were adults with at least six months of experience using a lower limb orthosis that extended from the foot to a level above the ankle.A total of 1,326 extant items were identified in a literature review. Focus group participants (n=29) provided feedback that informed the suitability of a construct definition and conceptual model. An advisory panel contributed to the selection of 118 candidate items for measuring orthotic mobility. Feedback from cognitive interview participants (n = 30) informed removal or revision of problematic items, resulting in a candidate bank of 100 mobility items.The rigorous qualitative methods applied here resulted in a large set of candidate items that spanned a range of situations relevant to moving with a lower limb orthosis. Next steps include administration of the candidate items to a large sample of lower limb orthosis users and calibration of the item bank. This article is protected by copyright. All rights reserved.

BACKGROUND Laryngeal dystonia (LD), or spasmodic dysphonia (SD), is a neurological disorder characterized by focal dystonia or involuntary spasms of the laryngeal muscles and associated voice symptoms. It is typically treated with injection of botulinum toxin (BoNT) that weakens the affected muscles. AIMS The primary purpose of this qualitative study was to explore participants' experience of living with LD and BoNT treatment. The secondary purpose was to examine those experiences as a function of participants' scores on the Communicative Participation Item Bank (CPIB). Results will enhance our understanding of restrictions in communicative participation, assist in planning intervention targeting these restrictions and aid in clinical interpretation of CPIB scores. METHODS & PROCEDURES Semi-structured interviews using a phenomenological tradition and focusing on BoNT treatment and communicative participation were conducted with 26 people with LD who are on established BoNT treatment regimens. Interviews were recorded, transcribed, coded and analysed inductively. Participants were categorized by CPIB scores into groups ranging from none to extensive participation restrictions. Both self- and expert ratings of voice were obtained. OUTCOMES & RESULTS Participants with different levels of CPIB scores had different experiences related to communicative participation in the context of BoNT treatment. These differences were organized into the following topics: BoNT and voice; attitudes toward participation; coping strategies; and advice. For all participants except those in the least restricted and most restricted groups, expert ratings of voice did not relate to CPIB scores. CONCLUSIONS & IMPLICATIONS Although most participants report improved voice with BoNT treatment, many participants experienced lingering restrictions in communicative participation, some to a severe extent. Participants reported coping with these restrictions in many ways; some of these strategies were more successful than others. Those with restricted participation recommended more support for daily life and the emotional toll of LD, as well as support for family members. This support might be offered by speech-language pathologists. WHAT THIS PAPER ADDS What is already known on the subject Participants with different levels of CPIB scores had different experiences related to communicative participation in the context of BoNT treatment. What this study adds to the existing knowledge Although most participants report improved voice with BoNT treatment, many participants experienced lingering restrictions in communicative participation, some to a severe extent. What are the potential or actual clinical implications of this work? SLP services that take a participation-focused approach to intervention and use multi-factorial approaches to help clients maximize their life participation in the context of LD are well within the SLP scope of practice. SLPs can help clients find and use their optimal voices within the constraints of the dystonia and BoNT effects.

OBJECTIVE: To determine how communicative participation is affected in patients with oral and oropharyngeal head and neck cancers (HNC) pre-treatment, and whether communication function predicts HNC-specific quality of life (QOL) before treatment, beyond known demographic, medical, psychosocial, and swallowing predictors. STUDY DESIGN: Cross-sectional study. SETTING: Tertiary care academic medical center. SUBJECTS AND METHODS: Eighty-seven patients with primary oral (40.2%) or oropharyngeal (59.8%) HNC were recruited prior to treatment. T stage, tumor site, and p16 status were extracted from medical records. Demographic and patient-reported measures were obtained. Communicative participation was measured using the Communicative Participation Item Bank (CPIB) General short form. A hierarchical regression analysis included demographic, medical, psychosocial, and functional measures of swallowing and communication as predictors; the University of Washington Quality of Life (UW-QOL v4) composite score was the predicted variable. RESULTS: Median baseline CPIB scores were 71.0 (SD = 11.83); patients with oral cancers reported worse scores. A final sequential hierarchical regression model that included all variables explained 71% of variance in QOL scores. Tumor site, T stage, and p16 status accounted for 28% of variance (P < 0.001). Perceived depression predicted an additional 28% of the variance (P < 0.001). Swallowing and communicative participation together predicted an additional 12% of variance (P = 0.005). Tumor site, perceived depression, swallowing, and communication measures were unique predictors in the final model. Finally, communicative participation uniquely predicted QOL, above and beyond other predictors. CONCLUSION: Pre-treatment communication predicted QOL, and was negatively impacted in some oral and oropharyngeal HNC patients.