Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review.

BACKGROUND: Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders (RNDDs). Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments. AIMS: This systematic review offers (1) a description of parent-reported communication measures and (2) evidence for their psychometric properties, in RNDDs. METHODS: The systematic review protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO; CRD42022334649). MEDLINE (Ovid), Embase, PsychINFO, Web of Science, CINAHL Plus, Cochrane Library, ClinicalTrials.gov, the Australian New Zealand Clinical Trials Registry were searched from inception to August 2023. Methodological assessment of quality was completed using the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. Parent-reported measures used in observational studies and clinical trials were identified. Data on utility, reliability and validity for RNDDs were extracted. MAIN CONTRIBUTION: Sixteen parent-reported communication measures were used in RNDD research, the Vineland Adaptive Behavior Scales being most commonly used. Validation data in RNDDs were identified for six of these measures. Limitations related to sample size or the scope of psychometric testing. CONCLUSIONS: Many communication measures have been used for RNDDs but there are few data validating their use. Valid and reliable methods of measuring communication in persons with RNDDs is a priority for future high-quality clinical trials. WHAT THIS PAPER ADDS: What is already known on the subject Communication is a critical domain for families with a child with a rare neurodevelopmental disorder (RNDD). Validated outcome measures are essential for accurate evaluation and interpretation of responses to treatments in clinical trials. What this paper adds to existing knowledge We identified 16 parent-reported communication measures that have been used with RNDDs, but only six measures had validation data for at least one RNDD. High quality evidence is accumulating, with all validation studies in this review published between 2020 to 2023. Modifications of existing measures may be required to assess communication for RNDDs. What are the clinical implications of this work? This systematic review catalogues the available psychometric data for communication measures and indicates an ongoing need for new validation studies to ensure they are fit-for-purpose for upcoming clinical trials in RNDDs. This review will inform the selection of communication measures for clinical trials and research studies.

Reasons for non-attendance in youth mental health clinics: Insights from mobile messaging communications.

AIM: Non-attendance at appointments in youth mental health services is a common problem which contributes to reduced service effectiveness and unmet needs. Reasons cited by young people for non-attendance are poorly understood. Information derived from short-message-service (SMS) conversations about appointments between patients and clinicians can uncover new insights about the circumstances leading to 'did not attend' events. METHODS: Text messages between young people and clinicians were examined in a retrospective audit of medical records in two youth mental health services in Perth, Australia. Frequently non-attending young people aged 16-24 (n = 40) engaged in 302 SMS message chains about appointments. Mixed methods included quantitative data and qualitative thematic analysis of textual data. RESULTS: Medical reasons (32/190, 16.8%) and forgetfulness (20/190, 10.5%) were the most frequent reasons for non-attendance. Major issues included non-avoidable events while others were potentially preventable and could be addressed by the service. CONCLUSIONS: The analysis of mobile communications in clinical practice can be used for service evaluation and to reveal barriers that impede attendance to ongoing care.

A review of placenta accreta spectrum and its outcomes for perinatal mental health.

OBJECTIVES: Placenta accreta spectrum conditions are rare, life-threatening disorders of placentation encountered in the perinatal period, with lasting impacts on maternal quality of life and psychological wellbeing. Although the obstetric outcomes are well-known, further review is warranted to explore the psychological sequelae that may accompany these conditions. CONCLUSIONS: The occurrence of placenta accreta spectrum during pregnancy is a major life stressor that can contribute to the development of psychiatric co-morbidity including posttraumatic stress disorder, depression and anxiety disorders. Early recognition of psychological distress and symptomatic profile is recommended at all stages of perinatal care complicated by this rare spectrum of conditions.

Awake and Alert: Examining the Portrayal of Energy Drinks on TikTok.

PURPOSE: Energy drinks (EDs) are not recommended for minors' consumption due to a myriad of health risks, but marketing initiatives persist. This study explored the promotion of EDs on TikTok, a platform frequented by children and adolescents. METHODS: 197 highly viewed videos from the four top ED-related hashtags on TikTok were coded for engagement variables, user information, sponsorship status, video content, and sentiment toward EDs. RESULTS: Of the 197 videos analyzed (combined 70 + million views), 29% disclosed sponsorship and 22% featured a child/adolescent. ED consumption appeared in 46% of videos, with 15% depicting hazardous consumption. Most videos (67%) had a positive sentiment toward EDs. DISCUSSION: ED-related TikTok videos are positively framed, have high engagement, and are not restricted for viewing by minors. As the platform's underage user-base grows, such videos may encourage heightened consumption. Given the known health risks, effective age-gated content restrictions are needed to reduce minors' exposure.

'Is hearing believing?': A study of voices and beliefs in psychosis and trauma.

OBJECTIVE: This study compared voice characteristics and beliefs in participants diagnosed with post-traumatic stress disorder (PTSD) with dissociation, schizophrenia (SCZ) and both diagnoses of SCZ and PTSD. The relationship between dissociation and voice beliefs was also assessed. METHOD: We identified 56 participants meeting the diagnostic criteria for PTSD with dissociation, SCZ or both diagnoses (PTSD + SCZ) who also experienced auditory hallucinations. Measures included PTSD Symptoms Scales Interview (PSSI-5), Psychotic Symptoms Rating Scale (PSYRAT), Clinician Administered Dissociative States Scale (CADSS), Beliefs about Voices Questionnaire (BAVQ) and Positive and Negative Syndrome Scale (PANSS). RESULTS: Beliefs about voices were similar across diagnostic groups. Participants with SCZ were more likely to attribute their voices to an external origin, and participants with dual diagnosis were less able to control their voices. The PTSD-only group scored higher in dissociation scores than either the SCZ-only or dual diagnosis group. Malevolent voice appraisals correlated with dissociation scores only in the dual diagnosis group. CONCLUSIONS: This research supports the hypothesis that voice beliefs are similar across diagnoses of PTSD and SCZ. However, differences in voice characteristics, emotional responses and relationship to dissociation may need to be considered in the psychological management of voices.

Visual phenomenology in schizophrenia and post-traumatic stress disorder: an exploratory study.

BACKGROUND: Visual experiences such as hallucinations are commonly reported by people with psychosis, psychological trauma and dissociative states, although questions remain about their similarities and differences. For diagnostic and therapeutic purposes, clinical research must better delineate and compare the characteristics of these experiences in post-traumatic stress disorder (PTSD) and in schizophrenia. AIMS: To compare visual phenomena and dissociation in participants with a primary psychotic illness and those with a trauma diagnosis. METHOD: A quantitative group design study comparing visual phenomena in three participant groups who also have a history of hearing voices: schizophrenia and no trauma history (n = 19), PTSD with dissociation (n = 17) and comorbid schizophrenia and PTSD (n = 20). Validated clinical measures included the North-East Visual Hallucination Interview, PTSD Symptoms Scale Interview, Clinician Administered Dissociative States Scale, Psychotic Symptoms Rating Scales and Positive and Negative Syndrome Scale. RESULTS: There was a remarkable similarity in visual experiences, including rates of complex visual hallucinations, between the three diagnostic groups. There were no significant differences in the severity or components of distress surrounding the visual experiences. Dissociation predicted visual hallucination severity for the comorbid schizophrenia and PTSD group, but not for PTSD or schizophrenia alone. CONCLUSIONS: Visual experiences in PTSD can include visual hallucinations that are indistinguishable from those experienced in schizophrenia. Multimodal hallucinations are frequently observed in both schizophrenia and PTSD. A model for visual hallucinations in PTSD is suggested, following two separate neurobiological pathways based on distinct responses to trauma.

Visual hallucinations in psychiatry - what aren't we seeing?

OBJECTIVE: To increase awareness of practising clinicians and researchers to the phenomenological distinctions between visual hallucinations and trauma-based, dissociative, visual re-experiencing phenomena seen in psychiatric disease. CONCLUSIONS: The experience of visual hallucinations is not exclusive to psychotic disorders in psychiatry. Different forms of experiences that resemble visual hallucinations may occur in patients with a trauma background and may potentially affect diagnosis. Given the paucity of literature around the subject, it is imperative that further research aims to characterise the distinction between visual hallucinations in psychosis and visual phenomena associated with trauma.