Deriving the Transdiagnostic Scales From the Personality Assessment Inventory and SPECTRA: Indices of Psychopathology: A Demonstration.

Transdiagnostic models of psychopathology address many of the shortcomings common to categorical diagnostic systems. These empirically derived models conceptualize psychopathology as a few broad interrelated and hierarchically arranged dimensions, with an overarching general psychopathology dimension, the p-factor, at the apex. While transdiagnostic models are gaining prominence in mental health research, the lack of available tools has limited their clinical translation. The present study explored the potential of creating transdiagnostic scales from the joint factor structure of the Personality Assessment Inventory, Alternative Model of Personality Disorder trait scales (AMPD), and the clinical scales of the SPECTRA: Indices of Psychopathology (SPECTRA). Exploratory factor analysis in a clinical sample (n = 212) identified five factors corresponding to the Negative Affect/Internalizing, Detachment, Antagonism/Externalizing, Disinhibition/Externalizing, and Thought Disorder transdiagnostic dimensions. Goldberg's "Bass-Ackward" method supported a hierarchical structure. Five composite transdiagnostic scales were created by summing each factor's highest loading PAI and SPECTRA scales. A global psychopathology scale was created by summing the five composite scales. All the composite scales demonstrated adequate internal consistency. Correlations between the composite scales and the NEO Five-Factor Inventory-3 provide initial validity evidence for four composite and global scales. The composite thought disorder scale had no conceptually corresponding NEO domain. Clinical implications and study limitations are discussed.

Equivalence of telehealth and face-to-face administration of the Wechsler Adult Intelligence Scale Fourth Edition (WAIS-IV).

Objective: Digital provision of cognitive tests like the Wechsler Adult Intelligence Scale Fourth Edition (WAIS-IV) has the potential to significantly increase access to important assessments. However, limited empirical evidence exists for the equivalence of telehealth and face-to-face administration. Presently test publishers recommend not administering subtests with stimulus materials that require manipulation via telehealth. Therefore, this study evaluated the equivalence of a telehealth administration procedure of the WAIS-IV with face-to-face administration. Method: A randomized repeated measures design included a sample of N = 28 participants with typical cognitive functioning, predominantly female (61%), aged 21 years (SD = 3.65), and identified as Australian (79%). Results: Our analysis showed that the point estimates of mean differences for indices and subtests (except PSI and Symbol Search) between face-to-face and telehealth applications were smaller than the smallest effect size of interest (SESOI). Analysis of 90% CIs around the mean difference showed the PRI Index and subtests Vocabulary, Information, and Arithmetic were statistically equivalent, while FSIQ, VCI, FRI, WMI indices, and other seven subtests were not statistically equivalent. For Null Hypothesis Significance Tests, the indices and all subtests were not significantly different from zero. Conclusions: These findings show a telehealth administration of the WAIS-IV provides scores similar to those collected in face-to-face administration, and observed differences were smaller than the difference expected due to measurement error. However, psychologists are cautioned not to solely rely on test scores when formulating outcomes but use clinical judgement with awareness of potential (albeit small) errors introduced by telehealth testing.

This article evaluates whether the Wechsler Adult Intelligence Scale, Fourth Edition, administered in an online format produces equivalent results to the traditional face-to-face administration of the test. The findings provided evidence of equivalence since differences between these administration methods (i.e. face-to-face vs. online format) were not meaningful. Guidelines are provided regarding how psychologists can use the test in a telehealth context, to continue cognitive evaluations for individuals with limited access to face-to-face health services.

ESDM intervention in severe preschool autism: an Italian Case report, psychological and social medicine reflections.

BACKGROUND: The goal of our contribution is to discuss a preschool intervention based on the Early Start Denver Model and the use of the main tools for the detection of adaptive behaviour in cases of autism: Vineland, ABAS. CASE PRESENTATION: the work is the presentation of a clinical case that has benefited from an intervention with the Early Start Denver Model methodology for the benefit of a child with socio-cultural and economic disadvantages. This early intervention, in a child of 36 months, which followed the diagnosis, was possible thanks to the intervention of many third-sector organizations which allowed this child, with a serious autism profile, to receive an evidence-based intervention for free. At the beginning of the intervention, the child presented a diagnosis of severe autism with absence of gaze, vocalizations and other communicative impairments. The level of motor clumsiness was also quite high, as were stereotypies. CONCLUSIONS: Research has shown the usefulness of intervening in this area with an early assessment and/or diagnosis and immediate intervention; however, public health services are not always able to maintain this pace. Our contribution therefore shows on the one hand the evidence of the improvements achieved by the child despite the low intensity of the treatment, and on the other hand, demonstrates the total versatility and adaptability of the Denver Model to the Italian context. In our conclusions, there are also some reflections on the tools used to measure adaptive behavior which seem to have a number of limitations and criticalities.

The role of mindfulness and resilience in Navy SEAL training.

Mindfulness and resilience are thought to be essential qualities of the military's special operations community. Both are tested daily in Special Operations Forces (SOF) assessment and selection efforts to prepare candidates to persist through grueling training and complex combat situations; but these qualities are rarely measured. While military leadership places value on the concepts of mindfulness and resilience, there is minimal empirical research examining the role that they play in the completion of training. This longitudinal study followed three classes of SEAL candidates at Basic Underwater Demolition/SEAL (BUD/S) training over their six-month selection program. We estimated logit models predicting successful completion of BUD/S and specific types of failure in that training environment with indexes of mindfulness and resilience at the start of the program as predictors of completion. The results indicate that (1) mindfulness is unrelated to completion, while (2) resilience is positively related to completion, and (3) The results indicate that mindfulness is generally unrelated to completion, while resilience generally predicts completion.

Psychosocial Status and Self-Perception in Patients with Cleft Lip and/or Palate.

OBJECTIVE: To describe how the psychosocial status of patients with cleft lip and/or palate (CL/P) relates to patient-reported outcomes (PROs). DESIGN: Cross-sectional retrospective chart review. SETTING: Tertiary care pediatric hospital. PATIENTS/PARTICIPANTS: Patients aged 8 to 29 years attending cleft team evaluations during a 1-year period. MAIN OUTCOME MEASURES: CLEFT-Q. RESULTS: Patients (N = 158) with isolated or syndromic CL/P and mean age 13.4 ± 3.0 years were included. Fifteen (9%) patients had siblings who also had CL/P. Of 104 patients who met with the team psychologist, psychosocial concerns were identified in 49 (47%) patients, including 25 (24%) with Attention-Deficit/Hyperactivity Disorder or behavior concerns, 28 (27%) with anxiety, and 14 (13%) with depression or mood concerns. Younger age and having siblings with cleft were associated with better PROs, while psychosocial concerns were associated with worse PROs on Speech, Psychosocial, and Face Appearance scales. CONCLUSIONS: Patient perception of cleft outcomes is linked to psychosocial factors.

Development and validation of an 8-item version of the Real Relationship Inventory-Client form.

OBJECTIVE: To develop and validate a very brief version of the 24-item Real Relationship Inventory-Client (RRI-C) form. METHOD: Two independent samples of individual psychotherapy patients (Nsample1 = 700, Nsample2 = 434) completed the RRI-C along with other measures. Psychometric scale shortening involved exploratory factor analysis, item response theory analysis, confirmatory factor analysis (CFA), and multigroup CFA. Reliability and convergent and discriminant validity of the scale and subscales were also assessed. RESULTS: The 8-item RRI-C (RRI-C-SF) preserves the two-factor structure: Genuineness (k = 4, α = .86) and Realism (k = 4, α = .87), which were correlated at r = .74. CFA provided the following fit indices for the bifactor model: X2/df = 2.16, CFI = .99, TLI = .96, RMSEA = .07, and SRMR = .03. Multigroup CFA showed that the RRI-C-SF was invariant across in-person and remote session formats. The RRI-C-SF demonstrated high reliability (α = .91); high correlation with the full-length scale (r = .96); and excellent convergent and discriminant validity with measures of other elements of the therapeutic relationship, personality characteristics, current mental health state, and demographic-clinical variables. Clinical change benchmarks were calculated to serve as valuable tools for both research and clinical practice. CONCLUSION: The RRI-C-SF is a reliable measure that can be used for both research and clinical purposes. It enables a nuanced assessment of the genuineness and the realism dimensions of the real relationship.

Validation of the Italian Version of the Web Screening Questionnaire for Common Mental Disorders.

BACKGROUND: The ever-increasing spread of Internet-based systems for common mental disorders has generated the need for brief online screening methods. This study aims to test the psychometric properties of the Web Screening Questionnaire (WSQ) to examine its suitability for screening for common mental health problems among a community sample of Italian adults. METHODS: A total of 1282 subjects (F = 819; mean age = 42.05) answered the WSQ. Its discriminant characteristics were examined with other validated selected scales for measuring mental health widely used in the Italian population using sensitivity, specificity, and area under the curve (AUC), as well as positive (PPV) and negative predictive values (NPV). RESULTS: Most of the WSQ subscales exhibited moderate to high specificity values. Specifically, the scales of 'agoraphobia' (0.947; 95%CI [0.934, 0.960]), 'anxiety' (0.959; 95%CI [0.946, 0.970]), and 'panic disorder' (0.973; 95%CI [0.964, 0.981]) showed the highest values whilst the 'obsessive-compulsive' dimension had the lowest value at 0.838, 95%CI [0.815, 0.861]. With exceptions observed for 'depression' (0.716; 95%CI [642, 798]) and 'alcohol abuse' (0.760; 95%CI [560, 920]), instead, the WSQ demonstrated critical sensitivity values (<0.6) in all dimensions. CONCLUSIONS: The WSQ was appropriate for discriminating between people with and without a psychiatric condition, as it helps to confirm the absence of disorders. However, further diagnostic procedures are required, in case of a positive WSQ screening result.

Stress and Coping Strategies in Malay Parents of Children with Cleft Lip and/or Palate.

OBJECTIVE: This study was aimed at describing the level of stress and types of coping strategies used among Malay parents of children with cleft lip and/or palate (CL/P). DESIGN: Cross-sectional study. SETTING: A dental clinic and a general hospital. PARTICIPANTS: Parents (N = 84) whose children were less than 12 years old with CL/P. METHODS: Socio-demographic data and clinical characteristics of CL/P were collected. Self-administered validated Malay versions of the stress scale from the Depressive, Anxiety and Stress Scale-42 (DASS-42) and COPE Inventory questionnaires were used. Descriptive statistics and Multivariate Analysis of Covariance were used for data analysis. RESULTS: The prevalence of stress among parents of children with CL/P was 21.4% [95% confidence interval (12.4, 30.4)]. The most common coping strategies were problem-focused (mean 58.15, standard deviation (SD) 7.75), followed by emotion-focused (mean 54.05, SD 4.78). The adjusted mean score for overall coping strategies was significantly different between stressed and non-stressed parents after adjustment for education, number of children, sex of child with CL/P, and cleft type [F (df) = 4.174 (3,74), P = .009]. There was a significant mean difference between stressed and non-stressed parents for avoidant coping strategies [P = .003]. Problem-focused and emotion-focused coping strategies did not differ after Bonferroni correction. CONCLUSIONS: Around a fifth of parents caring for children with CL/P experienced stress and avoidant coping strategies were more common among stressed parents. Multi-disciplinary team care should provide social support to parents of children with CL/P.

A critical overview of emotion processing assessment in non-affective and affective psychoses.

AIMS: Patients with affective and non-affective psychoses show impairments in both the identification and discrimination of facial affect, which can significantly reduce their quality of life. The aim of this commentary is to present the strengths and weaknesses of the available instruments for a more careful evaluation of different stages of emotion processing in clinical and experimental studies on patients with non-affective and affective psychoses. METHODS: We reviewed the existing literature to identify different tests used to assess the ability to recognise (e.g. Ekman 60-Faces Test, Facial Emotion Identification Test and Penn Emotion Recognition Test) and to discriminate emotions (e.g. Face Emotion Discrimination Test and Emotion Differentiation Task). RESULTS: The current literature revealed that few studies combine instruments to differentiate between different levels of emotion processing disorders. The lack of comprehensive instruments that integrate emotion recognition and discrimination assessments prevents a full understanding of patients' conditions. CONCLUSIONS: This commentary underlines the need for a detailed evaluation of emotion processing ability in patients with non-affective and affective psychoses, to characterise the disorder at early phases from the onset of the disease and to design rehabilitation treatments.

Australian psychologists' knowledge, confidence, and practices in fetal alcohol spectrum disorder diagnostic assessment.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental disorder caused by prenatal alcohol exposure (PAE). There are many documented barriers to FASD diagnostic assessment, including a limited number of trained clinicians. This study aimed to establish baseline levels of Australian psychologists' knowledge and practices in FASD assessment to develop training and improve future diagnostic capacity. METHODS: An online survey was completed by 106 Australian psychologists. The survey elicited respondents' demographics, knowledge about FASD, confidence in various aspects of assessment and perceived future training needs. RESULTS: Respondents reported a broad understanding of the FASD diagnostic term and potential harm of prenatal alcohol exposure (PAE). However, most respondents were not confident in their ability to conduct the psychometric assessments that provide a diagnostic assessment of FASD or ask about PAE. There was a significant positive correlation between the number of correct knowledge items and the psychologists' confidence in conducting FASD assessments. The clinical neuropsychologists demonstrated significantly greater knowledge and confidence in applying FASD diagnostic criteria and assessing PAE than school, clinical, and other psychologists. Most psychologists were more confident in their ability to apply the diagnostic criteria for other neurodevelopmental disorders. CONCLUSIONS: Recognition of FASD is growing in Australia, however, further work is required to improve clinicians' understanding of and confidence in completing FASD assessments. Most participants indicated a preference for online training to learn more about FASD assessment.

Measuring semantic memory using associative and dissociative retrieval tasks.

Recent theoretical advances highlighted the need for novel means of assessing semantic cognition. Here, we introduce the associative-dissociative retrieval task (ADT), positing a novel way to test inhibitory control over semantic memory retrieval by contrasting the efficacy of associative (automatic) and dissociative (controlled) retrieval on a standard set of verbal stimuli. All ADT measures achieved excellent reliability, homogeneity, and short-term temporal stability. Moreover, in-depth stimulus level analyses showed that the associative retrieval is easier for words evoking few but strong associates, yet such propensity hampers the inhibition. Finally, we provided critical support for the construct validity of the ADT measures, demonstrating reliable correlations with domain-specific measures of semantic memory functioning (semantic fluency and associative combination) but negligible correlations with domain-general capacities (processing speed and working memory). Together, we show that ADT provides simple yet potent and psychometrically sound measures of semantic memory retrieval and offers noteworthy advantages over the currently available assessment methods.

On Personality Measures and Their Data: A Classification of Measurement Approaches and Their Recommended Uses.

We employ a new approach for classifying methods of personality measurement such as self-judgment, mental ability, and lifespace measures and the data they produce. We divide these measures into two fundamental groups: personal-source data, which arise from the target person's own reports, and external-source data, which derive from the areas surrounding the person. These two broad classes are then further divided according to what they target and the response processes that produce them. We use the model to organize roughly a dozen kinds of data currently employed in the field. With this classification system in hand, we describe how much we might expect two types of measures of the same attribute to converge-and explain why methods often yield somewhat different results. Given that each measurement method has its own strengths and weaknesses, we examine the pros and cons of selecting a given type of measure to assess a specific area of personality.

The influence of psychological readiness of athletes when returning to sport after injury.

Background: Injuries are a common occurrence in sports participation; however, they have the potential to be accompanied by negative thoughts and feelings, which may play a part in the athletes' state of mind when they return to their sport. Assessing the degree to which this occurs provides an opportunity to evaluate and address athletes' state of mind before their return to play. Objectives: To determine if athletes are psychologically ready to return to play after an injury and if there are differences in fear avoidance behaviour between those who were and were not ready to return. Methods: Eighty-eight athletes participated in this descriptive survey. Athletes' confidence to return to play was measured by the Injury-Psychological Readiness to Return to Play (I-PRRS) questionnaire and their fear avoidance was measured by the Athlete Fear Avoidance Questionnaire (AFAQ). Results: Fifty injured athletes with a mean age of 23.3±4.0 years old responded to the I-PRRS and the AFAQ questionnaires. The average I-PRRS score was 46.5±9.1 AU. The evidence suggests that 60% of the athletes were not ready to return to sport (41.0±7.5 AU), whereas 40% were ready to return (54.8±3.1 AU). The difference in scores was not significant. The relationship between the AFAQ scores and the I-PRRS score for the 'ready' and 'not ready' groups was not significant (p=0.066). The mean AFAQ score (26.1±8.6 AU) for the 'not ready' group is marginally greater than the mean AFAQ score (21.6±7.5 AU) for the 'ready' group. There was a negative correlation between psychological readiness to return to sport and athletic fear avoidance (r =-0.508, p<0.001). Conclusion: There needs to be a greater utilisation of psychological assessment tools like the Injury-Psychological Readiness to Return to Play (I-PRRS) questionnaire, which can assist the athlete's support team, who can help identify athletes who are apprehensive about returning to sport after injury.

The relationship between performance validity testing, external incentives, and cognitive functioning in long COVID.

INTRODUCTION: Performance validity test (PVT) failures occur in clinical practice and at higher rates with external incentives. However, little PVT research has been applied to the Long COVID population. This study aims to address this gap. METHODS: Participants were 247 consecutive individuals with Long COVID seen for neuropsychological evaluation who completed 4 PVTs and a standardized neuropsychological battery. The sample was 84.2% White and 66% female. The mean age was 51.16 years and mean education was 14.75 years. Medical records were searched for external incentive (e.g., disability claims). Three groups were created based on PVT failures (Pass [no failures], Intermediate [1 failure], and Fail [2+ failures]). RESULTS: A total of 8.9% participants failed 2+ PVTs, 6.4% failed one PVT, and 85% passed PVTs. From the full sample, 25.1% were identified with external incentive. However, there was a significant difference between the rates of external incentives in the Fail group (54.5%) compared to the Pass (22.1%) and Intermediate (20%) groups. Further, the Fail group had lower cognitive scores and higher frequency of impaired range scores, consistent with PVT research in other populations. External incentives were uncorrelated with cognitive performance. CONCLUSIONS: Consistent with other populations, results suggest Long COVID cases are not immune to PVT failure and external incentives are associated with PVT failure. Results indicated that individuals in the Pass and Intermediate groups showed no evidence for significant cognitive deficits, but the Fail group had significantly poorer cognitive performance. Thus, PVTs should be routinely administered in Long COVID cases and research.

Broadening the Scope of Resilience in Chronic Pain: Methods, Social Context, and Development.

PURPOSE OF REVIEW: A wellspring of new research has offered varying models of resilience in chronic pain populations; however, resilience is a multifaceted and occasionally nebulous construct. The current review explores definitional and methodological issues in existing observational and clinical studies and offers new directions for future studies of pain resilience. RECENT FINDINGS: Definitions of pain resilience have historically relied heavily upon self-report and from relatively narrow scientific domains (e.g., positive psychology) and in narrow demographic groups (i.e., Caucasian, affluent, or highly educated adults). Meta-analytic and systematic reviews have noted moderate overall quality of resilience-focused assessment and treatment in chronic pain, which may be attributable to these narrow definitions. Integration of research from affiliated fields (developmental models, neuroimaging, research on historically underrepresented groups, trauma psychology) has the potential to enrich current models of pain resilience and ultimately improve the empirical and clinical utility of resilience models in chronic pain.

Standard of Care for Psychological Assessment of Patients Undergoing Allogeneic Hematopoietic Stem Cell Transplantation.

BACKGROUND: Comprehensive care prior to allogeneic hematopoietic stem cell transplantation (alloHSCT) can improve patient outcomes, yet psychological assessment prior to transplantation has been overlooked as a standard of care. OBJECTIVES: This review summarizes the evidence on psychological assessment for patients undergoing alloHSCT and explores the impact of psychological distress and/or psychological disorders on clinical outcomes and overall survival. METHODS: A literature search was conducted using PubMed®, CINAHL®, Embase®, and PsycINFO® for studies focused on psychological screening of patients in the alloHSCT population. FINDINGS: alloHSCT is associated with patient psychological distress and disorders, which can result in negative outcomes such as poorer quality of life and overall survival. Future studies implementing a validated instrument for psychological assessment may allow for early identification of vulnerable patients undergoing alloHSCT and interventions, which may improve overall outcomes.

The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care.

In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents' own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents' contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.

Illustrating psychometric tests, scales, and constructs: An R package for Item Pool Visualization.

Researchers assessing psychological constructs have to understand and choose between several competing measures. Item Pool Visualization (IPV, Dantlgraber et al., 2019) was developed to offer a systematic and detailed portrayal of the actual content and internal balance of competing measures. To enable the use of IPV, we developed and present here the IPV R package. Its aim is to allow researchers to add IPV to their repertoire with minimal effort. Creating IPV charts from raw data requires two simple function calls, because the package streamlines model specification, model estimation, and chart creation. It improves IPV conceptually by introducing the aggregate center distance and the item overview chart. It provides many customization options and generates high-quality, vector-based PDF output. The workflow of the package is explained using a reproducible open data example from a personality assessment.

Evaluation of Anxiety in Turkish Parents of Newborns with Cleft Palate with or Without Cleft Lip.

OBJECTIVE: (1) To compare anxiety between parents of newborns with cleft lip and palate (CLP), isolated cleft palate (CP), and healthy newborns and (2) to evaluate anxiety between parental dyads within these groups. DESIGN: A cross-sectional study. SETTING: University Hospital. PARTICIPANTS: Surveys were completed by 20 mothers and 20 fathers of newborns with CLP, 21 mothers and 21 fathers of newborns with CP, and 23 mothers and 23 fathers of healthy newborns (controls). MAIN OUTCOME MEASURE: The State-Trait Anxiety Inventory (STAI) assessed parental anxiety. Mothers of newborns with a cleft reported on concerns regarding cleft-related issues and facial appearance. RESULTS: State and trait anxiety were generally in the moderate range for parents of newborns with a cleft, while control parents had low state anxiety and moderate trait anxiety. Mothers of newborns with CP and CLP had significantly higher state and trait anxiety levels than control mothers (p < .05). Fathers of newborns with CLP had a higher state anxiety level than control fathers. When maternal and paternal anxiety was compared within the groups, only trait anxiety scores were significantly higher in mothers of newborns with CLP than that of fathers (p < .05). More than half of mothers of newborns with a cleft were concerned about their newborn's feeding, speech, and palate. CONCLUSIONS: Parents of children with a cleft may need psychological support in the early postnatal period. It is important for neonatal cleft team providers to help reduce parental anxiety and educate families about cleft care, with a focus on feeding.

Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives.

The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of life (QoL) of children with life-limiting and life-threatening conditions expressed by the children themselves and their parents. Through a cross-sectional study, the responses of 44 parent-child dyads were obtained and the analysis was performed with the statistics based on Student's t distribution and non-parametric tests. Children value QoL more positively (mean = 6.95, SD = 1.85) than their parents (mean = 5.39, SD = 2.43). This difference exists even if we consider sociodemographic and disease variables. The presence of exacerbated symptoms is the situation in which both parents (mean = 3.70; SD = 1.95) and children (mean = 5.60; SD = 1.17) evaluate QoL more negatively. CONCLUSIONS: Children have a more optimistic view than their parents. When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. The voice of the child and that of the family members can be collected to create a "family voice" and can be complementary. WHAT IS KNOWN: • Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked. WHAT IS NEW: • Children value QoL more positively than their parents do, even if we control for sociodemographic variables and the disease itself. • When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored.