Designing a Child-, Family-, and Healthcare Provider-Centered Procedure Room in a Tertiary Care Children's Hospital.

AIM: The study aim was to co-design new pediatric procedure room prototypes with children, caregivers, and healthcare providers (HCPs). BACKGROUND: Medical procedures can cause pain and anxiety for children and their families. If spaces are not designed for patients' needs, procedures may take longer, require sedation, and result in an inferior care experience. Involving HCPs in co-designing optimal spaces can result in more efficient and safer environments. co-designing spaces with patients and their families can inform psychologically safer and less traumatic environments. METHODS: We followed human-centered design methodology. Data were collected via semi-structured interviews, field observations, and two multidisciplinary design workshops with patients, caregivers, and HCPs. Themes from the data were extracted using a content analysis and used to make evidence-informed recommendations for design features. RESULTS: The study took place from October 2021 to February 2022. Patients, families, and HCPs reported similar needs: (1) control over the environment, including the ability to adjust lighting, temperature, and sound; (2) space that supports patient privacy; (3) the use of evidence-based pain reduction and distraction methods; (4) attention to the sensory environment, including visual (light, color), tactile (textures of furniture and equipment), auditory, and olfactory stimuli; (5) human factors organization of the space and equipment; (6) accessible and equitable spatial design; and (7) the significance of the journey leading up to and after the procedure. CONCLUSIONS: It is feasible to co-design procedure rooms that support evidence-based psychological, physical, and pharmacological interventions that are known to minimize pain for children.

Evaluation of a Pediatric Facial Paralysis Education and Family Support Day.

INTRODUCTION: Facial paralysis impairs the mimetic functions of the facial musculature. In pediatric patients, free functioning muscle transfer neurotized with an intact contralateral facial nerve is the gold standard for smile reanimation. In response to requests from families of children with facial paralysis, the Division of Plastic and Reconstructive Surgery at the Hospital for Sick Children hosted an inaugural "Facial Paralysis Family Day." The objective was to create an opportunity for families to meet, exchange stories, and build support networks. METHODS: This study was a quality improvement project to conduct a needs assessment and evaluate the feasibility and satisfaction of implementing a family support intervention for individuals living with facial paralysis. RESULTS: The needs assessment demonstrated that families were most interested in advances in medicine, therapy and coping sessions and meeting other families. The post-event evaluation questionnaire indicated that attendees enjoyed the event, would attend again and found it highly valuable connecting and networking other families. It also indicated that key needs identified were addressed, with excellent ratings for the presentation discussing advances in medicine (100% rated "good" or "very good"), the therapy sessions (92% rated "good" or "very good") and the presentations by patients and their families (100% rated "good" or "very good.") DISCUSSION:: Two areas of improvement highlighted were elaborating further on medical advances and facilitating interactions between families. Overall, this event was well regarded and will likely be repeated at our institution and serve as a valuable resource for other hospitals planning to organize a similar event.

An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy.

IMPORTANCE: Standardization of outcome measurement using a patient-centered approach in pediatric facial palsy may help aid the advancement of clinical care in this population. OBJECTIVE: To develop a standardized outcome measurement set for pediatric patients with facial palsy through an international multidisciplinary group of health care professionals, researchers, and patients and patient representatives. DESIGN, SETTING, AND PARTICIPANTS: A working group of health care experts and patient representatives (n = 21), along with external reviewers, participated in the study. Seven teleconferences were conducted over a 9-month period between December 3, 2016, and September 23, 2017, under the guidance of the International Consortium for Health Outcomes Measurement, each followed with a 2-round Delphi process to develop consensus. This process defined the scope, outcome domains, measurement tools, time points for measurements, and case-mix variables deemed essential to a standardized outcome measurement set. Each teleconference was informed by a comprehensive review of literature and through communication with patient advisory groups. Literature review of PubMed was conducted for research published between January 1, 1981, and November 30, 2016. MAIN OUTCOMES AND MEASURES: The study aim was to develop the outcomes and measures relevant to children with facial palsy as opposed to studying the effect of a particular intervention. RESULTS: The 21 members of the working group included pediatric facial palsy experts from 9 countries. The literature review identified 1628 papers, of which 395 (24.3%) were screened and 83 (5.1%) were included for qualitative evaluation. A standard set of outcome measurements was designed by the working group to allow the recording of outcomes after all forms of surgical and nonsurgical facial palsy treatments among pediatric patients of all ages. Unilateral or bilateral, congenital or acquired, permanent or temporary, and single-territory or multiterritory facial palsy can be evaluated using this standard set. Functional, appearance, psychosocial, and administrative outcomes were selected for inclusion. Clinimetric and psychometric outcome measurement tools (clinician-, patient-, and patient proxy-reported) and time points for measuring patient outcomes were established. Eighty-six independent reviews of the standard set were completed, and 34 (85%) of the 40 patients and patient representatives and 44 (96%) of the 46 health care professionals who participated in the reviews agreed that the standard set would capture the outcomes that matter most to children with facial palsy. CONCLUSIONS AND RELEVANCE: This international collaborative study produced a free standardized set of outcome measures for evaluating the quality of care provided to pediatric patients with facial palsy, allowing benchmarking of clinicians, comparison of treatment pathways, and introduction of value-based reimbursement strategies in the field of pediatric facial palsy. LEVEL OF EVIDENCE: NA.

Long-Term Outcomes of Smile Reconstruction in Möbius Syndrome.

BACKGROUND: Gracilis muscle transplant is the standard of care for smile reconstruction in children with Möbius syndrome. The authors describe the long-term clinical efficacy, durability, and psychosocial impact of this approach at a mean follow-up of 20 years. METHODS: Patients with Möbius syndrome who underwent gracilis muscle transfer between 1985 and 2005 were included in the study. The authors assessed midfacial movements using photographs and Scaled Measurement of Improvement in Lip Excursion measure, administered the patient-reported Facial Clinimetric Evaluation Scale, and used semistructured interviews. RESULTS: The mean age at surgery was 13.2 ±10.6 years and the mean follow-up was 20.4 ± 4.4 years postoperatively. Twenty-two gracilis muscle transplants were performed, all innervated by the motor nerve to the masseter. Photographic analysis using Scaled Measurement of Improvement in Lip Excursion software demonstrated that movement of the muscle was unchanged 20 years after surgery. Smile symmetry was stable long term. The overall mean Facial Clinimetric Evaluation score of the cohort was 62.3 ± 12.0. Facial comfort (86.4 ± 21.2) and social function (69.9 ± 18.5) subdomains were the highest. Although the facial movement subdomain score was 35.6 ± 12.4, the score related to smiling alone was 84.1 ± 20.2, indicating satisfaction with the midfacial reconstruction. Interview responses indicated high satisfaction with surgery; fulfilled expectations of social acceptance; improved communication; enhanced self-confidence; and a sense of increased facial symmetry, spontaneity, and smile excursion. CONCLUSION: Segmental gracilis muscle transplantation provides long-lasting, durable improvements in objective and patient-reported measures of facial function.