The development of a Self-Rated ICF-based questionnaire (HEAR-COMMAND Tool) to evaluate Hearing, Communication, and Conversation disability: Multinational experts' and patients' perspectives.

Objective: An instrument that facilitates the advancement of hearing healthcare delivery from a biomedical model to a biopsychosocial one that underpins the International Classification of Functioning, Disability, and Health framework (ICF) brief and comprehensive Core Sets for Hearing Loss (CSHL) is currently unavailable. The objective is to describe the process of developing and validating a new questionnaire named the created by transferring the ICF CSHL into a theory-supported, practically manageable concept.

Design: A team from Germany, the USA, the Netherlands, and Egypt collaborated on development.

Expanding the clinical spectrum of primary coenzyme Q10 deficiency type 6: The first case with cardiomyopathy.

We report a 19-month-old patient with cardiomyopathy as the first presenting feature of primary COQ10 deficiency-6. This case expands the phenotypic spectrum of this disorder. Furthermore, it shows that genetic testing for primary COQ10 deficiency should be considered in patients with pediatric-onset cardiomyopathy as it can guide treatment options.

The Longitudinal Relationship Between Speech Recognition in Noise, Need for Recovery After Work, Job Demand, and Job Control Over a Period of 5 Years.

Objective: Hearing impairment may lead to an increased need to recover from fatigue and distress after a day of work. Also, hearing impairment may negatively affect the balance between workload and control over it (job demand and job control). The uptake of hearing solutions may have a positive effect on these outcomes.

Uptake of Hearing Aids and Hearing Assistive Technology in a Working Population: Longitudinal Analyses of The Netherlands Longitudinal Study on Hearing.

Objective: To identify predictors of the 5-year uptake of hearing aids (HAs) and hearing assistive technology (HAT) in a sample of Dutch employees eligible for HAs and/or HAT. The potential predictors included demographic factors (age, sex, marital status, and living situation), education, hearing factors (ability to recognize speech in noise and self-reported hearing disability), distress, self-efficacy, and work-related factors (job demand, job control, and need for recovery).

Design: Five-year follow-up data of the Netherlands Longitudinal Study on Hearing (NL-SH) collected until January 2019 were included.

Syndromic disorders caused by gain-of-function variants in KCNH1, KCNK4, and KCNN3-a subgroup of K channelopathies.

Decreased or increased activity of potassium channels caused by loss-of-function and gain-of-function (GOF) variants in the corresponding genes, respectively, underlies a broad spectrum of human disorders affecting the central nervous system, heart, kidney, and other organs. While the association of epilepsy and intellectual disability (ID) with variants affecting function in genes encoding potassium channels is well known, GOF missense variants in K channel encoding genes in individuals with syndromic developmental disorders have only recently been recognized. These syndromic phenotypes include Zimmermann-Laband and Temple-Baraitser syndromes, caused by dominant variants in KCNH1, FHEIG syndrome due to dominant variants in KCNK4, and the clinical picture associated with dominant variants in KCNN3.

Audiological approaches to address the psychosocial needs of adults with hearing loss: perceived benefit and likelihood of use.

Objective: To explore the perceived benefit and likely implementation of approaches used by audiologists to address their adult clients' psychosocial needs related to hearing loss.

Design: Adults with hearing loss and audiologists completed separate, but related, surveys to rate their perceived benefit and also their likely use of 66 clinical approaches (divided over seven themes) that aim to address psychosocial needs related to hearing loss.

Study Sample: A sample of 52 Australian adults with hearing loss, and an international sample of 19 audiologists.

Operationalization of the Brief ICF Core Set for Hearing Loss: An ICF-Based e-Intake Tool in Clinical Otology and Audiology Practice.

Objectives: According to the International Classification of Functioning, Disability and Health (ICF), functioning reflects the interplay between an individual's body structures and functions, activities, participation, environmental, and personal factors. To be useful in clinical practice, these concepts need to be operationalized into a practical and integral instrument. The Brief ICF Core Set for Hearing Loss (CSHL) provides a minimum standard for the assessment of functioning in adults with hearing loss.

Identifying the approaches used by audiologists to address the psychosocial needs of their adult clients.

Objective: To identify the approaches taken by audiologists to address their adult clients' psychosocial needs related to hearing loss.

Design: A participatory mixed methods design. Participants generated statements describing the ways in which the psychosocial needs of their adult clients with hearing loss are addressed, and then grouped the statements into themes.

Proposal to extend the PROMIS® item bank v2.0 'Ability to Participate in Social Roles and Activities': item generation and content validity.

Purpose: Previous research indicated that the Patient-Reported Outcomes Measurement Information System (PROMIS®) item bank v2.0 'Ability to Participate in Social Roles and Activities' may miss subdomains of social participation. The purpose of this study was to generate items for these missing subdomains and to evaluate their content validity.

The Otology Questionnaire Amsterdam: A generic patient-reported outcome measure about the severity and impact of ear complaints. Validation, reliability and responsiveness.

Objective: To examine the construct validity, reliability and responsiveness of the Otology Questionnaire Amsterdam (OQUA).

Design: Multicentre, longitudinal study in 2 separate cohorts of patients visiting an ENT surgeon via an online survey programme.

Setting: Tertiary ENT clinics.

Developing an intervention to implement an ICF-based e-intake tool in clinical otology and audiology practice.

To develop an intervention for the implementation of an ICF-based e-intake tool in clinical oto-audiology practice. Intervention design study using the eight-stepped Behaviour Change Wheel. Hearing health professionals' (HHPs) and patients' barriers to and enablers of the use of the tool were identified in our previous study (steps 1-4).

Barriers to and enablers of the implementation of an ICF-based intake tool in clinical otology and audiology practice-A qualitative pre-implementation study.

The authors are developing an intake tool based on the Brief International Classification of Functioning Disability and Health Core Set for Hearing Loss, by operationalizing its categories into a Patient Reported Outcome Measure. This study was aimed at identifying enablers and barriers to using this tool as perceived by hearing health professionals (HHPs) and patients. Focus groups and interviews were held with HHPs (ENT surgeons, N = 14; audiologists, N = 8) and patients (N = 18).

Comparing the International Classification of Functioning, Disability, and Health Core Sets for Hearing Loss and Otorhinolaryngology/Audiology Intake Documentation at Mayo Clinic.

Objectives: The International Classification of Functioning, Disability, and Health (ICF) Core Sets for Hearing Loss (CSHL) consists of short lists of categories from the entire ICF classification that are thought to be the most relevant for describing the functioning of persons with hearing loss. A comprehensive intake that covers all factors included in the ICF CSHL holds the promise of developing a tailored treatment plan that fully complements the patient's needs. The Comprehensive CSHL contains 117 categories and serves as a guide for multiprofessional, comprehensive assessment.

Risk Factors of Impaired Neuropsychologic Outcome in School-Aged Survivors of Neonatal Critical Illness.

Objective: Until now, long-term outcome studies have focused on general cognitive functioning and its risk factors following neonatal extracorporeal membrane oxygenation and/or congenital diaphragmatic hernia. However, it is currently unknown which neuropsychological domains are most affected in these patients and which clinical variables can be used to predict specific neuropsychological problems. This study aimed to identify affected neuropsychological domains and its clinical determinants in survivors of neonatal extracorporeal membrane oxygenation and/or congenital diaphragmatic hernia.

Congenital Diaphragmatic Hernia and Growth to 12 Years.

Objectives: Growth problems are reported in patients with congenital diaphragmatic hernia during the first years of life. However, it is unknown if poor growth persists during childhood. We therefore evaluated growth of patients longitudinally until 12 years of age.

Measurement properties of the Arm Function in Multiple Sclerosis Questionnaire (AMSQ): a study based on Classical Test Theory.

Purpose: The construct validity, test-retest reliability, and measurement error of the Arm Function in Multiple Sclerosis Questionnaire (AMSQ) were examined. Additionally, the influence of administration-method on reliability and measurement error was investigated.

Method: 112 Dutch adult MS-patients from an academic- and a residential care-facility participated.

Nationwide Evaluation of Congenital Hypothyroidism Screening during Neonatal Extracorporeal Membrane Oxygenation.

Background: Thyroid hormone concentrations may deviate from normal values during critical illness. This condition is known as nonthyroidal illness syndrome (NTIS), and it can influence the results of screening for congenital hypothyroidism (CH) during neonatal extracorporeal membrane oxygenation (ECMO).

Objectives: To determine the incidence of aberrant CH screening results in ECMO-treated neonates, to identify possible determinants, and to follow up patients with abnormal thyroid hormone concentrations.

Overlap and Nonoverlap Between the ICF Core Sets for Hearing Loss and Otology and Audiology Intake Documentation.

Objectives: The International Classification of Functioning Disability and Health (ICF) Core Sets for Hearing Loss (HL) were developed to serve as a standard for the assessment and reporting of the functioning and health of patients with HL. The aim of the present study was to compare the content of the intake documentation currently used in secondary and tertiary hearing care settings in the Netherlands with the content of the ICF Core Sets for HL. Research questions were (1) to what extent are the ICF Core Sets for HL represented in the Dutch Otology and Audiology intake documentation? (2) are there any extra ICF categories expressed in the intake documentation that are currently not part of the ICF Core Sets for HL, or constructs expressed that are not part of the ICF?

Design: Multicenter patient record study including 176 adult patients from two secondary, and two tertiary hearing care settings.

Comprehending the impact of low vision on the lives of children and adolescents: a qualitative approach.

Purpose: To develop a comprehensive, conceptual model detailing the aspects of a child's life (<18 years) that are affected by low vision.

Methods: Three stakeholders were involved in the developmental process of the conceptual model: children and adolescents with a visual impairment (n = 40), parents of children with a visual impairment (n = 25) and professionals of multidisciplinary rehabilitation centres and specialised schools (n = 25). Qualitative methods including focus groups, online and face-to-face brainstorming sessions and concept mapping were used to investigate the impact of visual impairment on the lives of children and adolescents and to create the conceptual model.

Investigating rehabilitation needs of visually impaired young adults according to the International Classification of Functioning, Disability and Health.

Purpose: To gain qualitative insight into the rehabilitation needs of visually impaired young adults (18-25 years) and how these needs relate to the International Classification of Functioning, Disability and Health (ICF) and patient characteristics.

Methods: Rehabilitation needs and patient characteristics of young adults (N = 392) who applied for multidisciplinary services in 2012 and 2013 were obtained from structured and semi-structured intake records. Linking rules were used to assess how the needs related to Environmental Factors, Body Functions, Body Structures, and Activity and Participation (A&P) ICF components.

Growth in children with congenital diaphragmatic hernia during the first year of life.

Purpose: Infants with congenital diaphragmatic hernia (CDH) have high rates of mortality and long-term morbidity, including poor growth and failure to thrive. The aim of this study was to describe growth patterns during the first year of life in infants with congenital diaphragmatic hernia in a non-ECMO cohort.

Methods: Medical records of infants with CDH admitted to our center between January 2005 and December 2011 were reviewed.

Neurodevelopmental outcome in Congenital Diaphragmatic Hernia survivors during the first three years.

Objective: To determine neurodevelopmental outcome in Congenital Diaphragmatic Hernia (CDH) survivors during the first three years of life.

Methods: Admitted CDH patients were assessed at the age of 12 (n=18) and 36 months (n=15) using the Bayley Scales of Infant and Toddler Development Third Edition. Neurodevelopmental results of CDH patients were compared with published norms and with a healthy matched control group.