Table 1.

Interview Guides and Assessments

Diagnostic Imaging	Physical Therapy	Social Work	Occupational Therapy
Full-body X-rays were conducted to radiographically assess bone, joints, and entheses of each study participant.	Measurement of the passive range of motion bilaterally of the hip, knee, ankle, and cervical spine using a gravity-dependent goniometer. Lower Extremity Functional Scale (LEFS)46 Activities-Specific Balance Confidence (ABC) Scale26 Berg Balance Scale28 Standardized manual muscle testing 3D-kinematic analysis of the gait cycle	Psychosocial questionnaire (adapted from DASS, SF-36, and CAHPS® surveys19–21) Semi-structured interview: How do you think about your XLH at this point in your life? How do you think about your body? How does or has XLH impacted decisions you’ve made in your in your life? Prompt for details – Daily activities? Social life? School? Relationships? Family planning? Are you in contact with other people with XLH? What are those relationships like? What are your biggest concerns right now?	Disabilities of the Arm, Shoulder, and Hand questionnaire (DASH)22 Canadian Occupational Performance Measure (COPM)23: Step 1: Patient identifies problems in performance of daily activities Step 2: Patient determines priorities by rating the importance of each problem on a 10-point scale from “not important at all” to “extremely important” Step 3: Based on step 2, the patient identifies the 5 most important problems (highest rated) Step 4: For each of these prioritized items, the patient rates on a 10-point scale the performance from “not able to do it at all” to “able to do it extremely well” Step 5: For these same items, the patient rates their satisfaction from “not satisfied at all” to “extremely satisfied”

CAHPS, Consumer Assessment of Healthcare Providers and Systems; DASS, Depression Anxiety Stress Scales; SF-36, 36-item Short Form Health Survey; XLH, X-linked hypophosphatemia.