Article
Health Care Sciences & Services
Titi Sahidah Fitriana, Fredrick Dermawan Purba, Rina Rahmatika, Riski Muhaimin, Nur Melani Sari, Gouke Bonsel, Elly Stolk, Jan J. Busschbach
Summary: This study compared the measurement properties and responsiveness of EQ-5D-Y-3L and EQ-5D-Y-5L in pediatric patients. The results showed that the feasibility, convergent validity, and disease-specific measures were similar between the two versions, but EQ-5D-Y-5L had better test-retest reliability and sensitivity for detecting health changes.
HEALTH AND QUALITY OF LIFE OUTCOMES
(2021)
Article
Health Care Sciences & Services
Titi Sahidah Fitriana, Fredrick Dermawan Purba, Elly Stolk, Jan J. Busschbach
Summary: Background: Self-report is the standard method for measuring health-related quality of life (HRQoL) in children, but sometimes children are unable to report their own health. This study investigated the agreement between self-report and proxy-report measures of HRQoL in children using the EQ-5D-Y questionnaire. The study also explored the potential benefits of extending the response levels of the proxy questionnaire from 3 to 5.
HEALTH AND QUALITY OF LIFE OUTCOMES
(2022)
Article
Psychology, Multidisciplinary
Brigitte Essers, Pei Wang, Elly Stolk, Marcel F. Jonker, Silvia Evers, Manuela Joore, Carmen Dirksen
Summary: The study aimed to explore the age dependency of health state values derived from trade-offs between HRQoL and life years, and found differences in consistency of health state values for different age groups between the Netherlands and China, as well as no clear patterns in the composition of QALYs.
FRONTIERS IN PSYCHOLOGY
(2023)
Article
Oncology
Li-Fei Sun, Sheng Huang, Yun-Fen Li, Zhuang-Qing Yang, Xiao-Juan Yang, Jie-Ya Zou, Xiao-Wen Wang, Jian-Yun Nie
Summary: This study explored the factors influencing the health-related quality of life of spouses of breast cancer patients and the suitable questionnaires for assessment. The results showed that social support and cognition of the treatment effect were important factors influencing the health-related quality of life of spouses. The EQ-5D-3L questionnaire demonstrated good reliability and validity in measuring the quality of life of spouses of breast cancer patients.
FRONTIERS IN ONCOLOGY
(2022)
Article
Pediatrics
Richard Huan Xu, Liling Zhu, Rongjia Sun, Rachel Lee-Yin Tan, Nan Luo, Sainan Zou, Dong Dong
Summary: This study evaluated and compared the psychometric properties of EQ-5D-Y-3L, EQ-5D-Y-5L, CHU-9D, and PedsQL in Chinese children and adolescents with osteogenesis imperfecta. The results showed that EQ-5D-Y-5L performed better than EQ-5D-Y-3L in terms of acceptability, convergent validity, and discriminatory power.
EUROPEAN JOURNAL OF PEDIATRICS
(2022)
Article
Public, Environmental & Occupational Health
Titi Sahidah Fitriana, Fredrick Dermawan Purba, Elly Stolk, Jan J. V. Busschbach
Summary: This study provides population norms for the EQ-5D-Y-3 L, EQ-5D-Y-5 L, and PedsQL Generic Core Scales in Indonesian youth. The findings show that age, gender, economic status, and health complaints are related to health-related quality of life in adolescents. These results provide a basis for health studies and policies targeting the youth population in Indonesia.
Article
Economics
Anne Simone Juhl Christiansen, Marie Louise Sletskov Moller, Christian Kronborg, Ketil Jorgen Haugan, Lars Kober, Soren Hojberg, Axel Brandes, Claus Graff, Soren Zoga Diederichsen, Jonas Bille Nielsen, Derk Krieger, Anders Gaarsdal Holst, Jesper Hastrup Svendsen
Summary: The study compared the measurement properties of EQ-5D-5L and EQ-5D-3L in an elderly population with comorbidities, finding better performance of EQ-5D-5L in terms of feasibility, ceiling effect, discriminatory power, and convergent validity.
EUROPEAN JOURNAL OF HEALTH ECONOMICS
(2021)
Article
Health Care Sciences & Services
Janine Verstraete, Zara Marthinus, Stewart Dix-Peek, Des Scott
Summary: This study aimed to compare the instrument performance and responsiveness of the EQ-5D-Y-3L and the expanded English version of the EQ-5D-Y-5L in children and adolescents receiving acute orthopaedic management in South Africa. The results showed that the EQ-5D-Y-5L performed better, reducing the ceiling effect and demonstrating greater discriminatory power.
HEALTH AND QUALITY OF LIFE OUTCOMES
(2022)
Article
Pediatrics
Razia Amien, Desiree Scott, Janine Verstraete
Summary: This study compared the performance of the EQ-5D-Y-3L self-complete and interviewer-administered versions in South African children aged 8-10 years. The results showed that both versions were valid and reliable, and can be used interchangeably. Some children preferred the interviewer-administered version, with reasons including literacy level.
Article
Economics
Jiaer Lin, Carlos King Ho Wong, Jason Pui Yin Cheung, Prudence Wing Hang Cheung, Nan Luo
Summary: This study assessed the psychometric performance of the proxy-reported Y-5L and Y-3L in assessing the HRQoL of JIS or AIS patients. The results showed that both instruments had high reliability and validity and are suitable for assessing the life quality of patients.
EUROPEAN JOURNAL OF HEALTH ECONOMICS
(2022)
Article
Health Care Sciences & Services
Kristina Ludwig, Bastian Surmann, Eva Raecker, Wolfgang Greiner
Summary: The purpose of this study was to develop and test a cognitive dimension as a bolt-on for the German version of the EQ-5D-Y. Through literature review and focus group discussions, important components of cognitive functioning were identified and added to EQ-5D-Y, which improved Health-Related Quality of Life measurement.
QUALITY OF LIFE RESEARCH
(2022)
Article
Economics
Valentina Prevolnik Rupel, Juan M. Ramos-Goni, Marko Ogorevc, Simone Kreimeier, Kristina Ludwig, Wolfgang Greiner
Summary: This study compared preferences for EQ-5D-Y-3L obtained from adolescents and adults considering a hypothetical 10-year-old child in Germany, Slovenia, and Spain. Adolescents tend to prioritize mobility and self-care, while giving less importance to anxiety/depression. Differences were observed in the rank-order of dimension levels between adults and adolescents in all 3 countries.
Article
Health Care Sciences & Services
Juan Zhu, Xin-Xin Yan, Cheng-Cheng Liu, Hong Wang, Le Wang, Su-Mei Cao, Xian-Zhen Liao, Yun-Feng Xi, Yong Ji, Lin Lei, Hai-Fan Xiao, Hai-Jing Guan, Wen-Qiang Wei, Min Dai, Wanqing Chen, Ju-Fang Shi
Summary: The study found that EQ-5D-5L has better discriminatory power and lower ceiling effect in cancer patients, which may be more suitable for assessing HRQoL.
QUALITY OF LIFE RESEARCH
(2021)
Article
Health Care Sciences & Services
Elena Olariu, Raluca Caplescu, Luke Vale, Ileana Gabriela Niculescu-Aron, Yemi Oluboyede, Marian Sorin Paveliu
Summary: The study aimed to estimate population norms for the Romanian versions of EQ-5D-5L, EQ-5D-3L, their indexes, and EQ VAS. A cross-sectional survey was conducted using a representative sample, and descriptive statistics were used to estimate population norms by age groups and sex. The findings provide reference values for healthcare professionals, researchers, and decision-makers in Romania.
HEALTH AND QUALITY OF LIFE OUTCOMES
(2023)
Article
Health Care Sciences & Services
Alex Bato, Valentin Brodszky, L. Hunor Gergely, Krisztian Gaspar, Norbert Wikonkal, Agnes Kinyo, Akos Szabo, Zsuzsanna Beretzky, Andrea Szegedi, Eva Remenyik, Norbert Kiss, Miklos Sardy, Fanni Rencz
Summary: The study aimed to compare the measurement properties of two adult versions of EQ-5D in patients with Hidradenitis suppurativa (HS), with EQ-5D-5L outperforming EQ-5D-3L in terms of feasibility, informativity, and validity for important clinical characteristics. EQ-5D-5L was recommended for assessing HS patients across various settings.
QUALITY OF LIFE RESEARCH
(2021)
Review
Psychology, Developmental
Melissa H. Black, Melissa Scott, Elliot Baker-Young, Craig Thompson, Sarah McGarry, Maya Hayden-Evans, Zelma Snyman, Frank Zimmermann, Viktor Kacic, Torbjorn Falkmer, Marcel Romanos, Sven Boelte, Sonya Girdler, Benjamin Milbourn
Summary: Suicide among post-secondary students is a significant public health concern. While there have been studies on suicide prevention programs, the effective elements of these interventions are still unknown. This study reviewed the literature and identified potential effective elements of suicide prevention programs for post-secondary students. Gatekeeper training programs were found to be the most common type of intervention. These programs have the potential to improve students' engagement with mental health services, knowledge, help-seeking attitudes and behaviors, and gatekeeper-related outcomes.
EUROPEAN CHILD & ADOLESCENT PSYCHIATRY
(2023)
Article
Biochemistry & Molecular Biology
Zhiqiang Sha, Daan van Rooij, Evdokia Anagnostou, Celso Arango, Guillaume Auzias, Marlene Behrmann, Boris Bernhardt, Sven Bolte, Geraldo F. Busatto, Sara Calderoni, Rosa Calvo, Eileen Daly, Christine Deruelle, Meiyu Duan, Fabio Luis Souza Duran, Sarah Durston, Christine Ecker, Stefan Ehrlich, Damien Fair, Jennifer Fedor, Jacqueline Fitzgerald, Dorothea L. Floris, Barbara Franke, Christine M. Freitag, Louise Gallagher, David C. Glahn, Shlomi Haar, Liesbeth Hoekstra, Neda Jahanshad, Maria Jalbrzikowski, Joost Janssen, Joseph A. King, Luisa Lazaro, Beatriz Luna, Jane McGrath, Sarah E. Medland, Filippo Muratori, Declan G. M. Murphy, Janina Neufeld, Kirsten O'Hearn, Bob Oranje, Mara Parellada, Jose C. Pariente, Merel C. Postema, Karl Lundin Remnelius, Alessandra Retico, Pedro Gomes Penteado Rosa, Katya Rubia, Devon Shook, Kristiina Tammimies, Margot J. Taylor, Michela Tosetti, Gregory L. Wallace, Fengfeng Zhou, Paul M. Thompson, Simon E. Fisher, Jan K. Buitelaar, Clyde Francks
Summary: Small average differences in the left-right asymmetry of cerebral cortical thickness have been observed in individuals with autism spectrum disorder (ASD). This study used a large sample of data to examine the structural network effects of these regional alterations. The findings suggest that altered asymmetrical brain development in ASD may affect networks involved in executive functions, language-related processes, and sensorimotor processes.
MOLECULAR PSYCHIATRY
(2022)
Editorial Material
Psychology, Clinical
Pei-Yin Pan, Samuele Cortese, Sven Bolte
PSYCHOLOGICAL MEDICINE
(2023)
Article
Rehabilitation
Hampus Bejno, Lise Roll-Pettersson, Lars Klintwall, Ulrika Langh, Samuel L. Odom, Sven Bolte
Summary: This pre-registered study aimed to evaluate the Swedish Autism Program Environment Rating Scale (APERS-P-SE) as a means to promote the quality of the pre-school learning environment for children on the autism spectrum. The results showed that APERS-P-SE assessment can significantly improve the quality of the learning environment, but the impact on children and pre-school staff was not significant.
SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY
(2023)
Review
Psychology, Developmental
Matthew Jones, Marita Falkmer, Ben Milbourn, Tele Tan, Sven Bolte, Sonya Girdler
Summary: This study identified three core elements of strength-based technology programs for youth with ASD through a systematic review of the literature: mutual respect, demonstrating skills, and interests.
REVIEW JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
(2023)
Article
Rehabilitation
Emily D'Arcy, Kiah Evans, Bahareh Afsharnejad, Benjamin Milbourn, Sven Bolte, Sonya Girdler
Summary: This study investigated the assessment of functioning practices and barriers to using best practice in the disability sector in Australia. The results revealed a lack of clear transdisciplinary conceptualisation of functioning in current practice, with limited time, large caseloads, availability of appropriate tools, and lack of clarity from funding bodies being the main barriers.
AUSTRALIAN OCCUPATIONAL THERAPY JOURNAL
(2023)
Article
Behavioral Sciences
Rianne Haartsen, Luke Mason, Pilar Garces, Anna Gui, Tony Charman, Julian Tillmann, Mark H. Johnson, Jan K. Buitelaar, Eva Loth, Declan Murphy, Emily J. H. Jones
Summary: The study explores the neural processing of faces in individuals with autism and finds differences in the activation patterns between diagnostic groups. The findings suggest that early difficulties with configural face processing in autism may lead to compensatory processes and the involvement of non-typical neural systems in later development.
Review
Clinical Neurology
Sven Bolte, Janina Neufeld, Peter B. Marschik, Zachary J. Williams, Louise Gallagher, Meng-Chuan Lai
Summary: There are qualitative and quantitative differences in health conditions between individuals of different birth-assigned sexes, gender identities, and gender experiences, which require personalized care. It is important to study the moderating and mediating effects of sex and gender factors on impairment, disability, wellbeing, and health, especially for neurodivergent individuals. Researchers have started to investigate the mechanisms through which sex and gender variables affect the manifestations of neurodevelopmental conditions.
NATURE REVIEWS NEUROLOGY
(2023)
Article
Biology
Irzam Hardiansyah, Par Nystroem, Mark J. J. Taylor, Sven Bolte, Angelica Ronald, Terje Falck-Ytter
Summary: This study finds that a distinct organization of global motion processing is associated with autistic symptoms in toddlerhood, based on EEG data from nearly 500 five month old infants.
COMMUNICATIONS BIOLOGY
(2023)
Article
Psychology, Developmental
Maria Loethberg, Tatja Hirvikoski, Sonya Girdler, Sven Boelte, Ulf Jonsson
Summary: In Sweden, housing support is provided to people with neurodevelopmental conditions, primarily autism or ADHD, who require daily living support. This study aimed to explore support workers' perspectives on current practice in housing support for young adults with neurodevelopmental conditions. The interviews highlighted the complexity of the service and the need for more knowledge about neurodevelopmental conditions. The results raise important questions about how housing support should be organized and delivered to meet specific needs and ensure equal services across municipalities.
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
(2023)
Article
Psychology, Developmental
Hanna Agius, Anne-Kristina Luoto, Anna Backman, Carina Eriksdotter, Nitya Jayaram-Lindstrom, Sven Bolte, Tatja Hirvikoski
Summary: Autistic adults face high stress levels and struggle to cope with stressors. Mindfulness-based stress reduction shows promise as it helps individuals utilize their own resources to regulate stress responses. A feasibility study was conducted to determine the effectiveness of mindfulness-based stress reduction in autistic adults. The results showed that participants found the intervention logical and beneficial, with reduced stress symptoms and improved stress-coping skills.
Article
Psychiatry
Simone Zuffa, Patrick Schimmel, Ayoze Gonzalez-Santana, Clara Belzer, Jan Knol, Sven Bolte, Terje Falck-Ytter, Hans Forssberg, Jonathan Swann, Rochellys Diaz Heijtz
Summary: Evidence suggests that the microbiota-gut-brain axis is involved in the neurobiology of Autism Spectrum Disorder (ASD). This study examined the development of the fecal microbiota and metabolome in infants with and without a family history of ASD. It was found that infants at elevated-likelihood of ASD had a different microbial composition, with lower levels of Bifidobacterium and higher levels of Clostridium and Klebsiella species compared to low-likelihood infants. The study also revealed a correlation between certain microbes and gamma-aminobutyric acid (GABA) levels, which may have implications for behavioral variability later in life.
TRANSLATIONAL PSYCHIATRY
(2023)
Article
Psychology, Developmental
Maja Rudling, Par Nystrom, Giorgia Bussu, Sven Bolte, Terje Falck-Ytter
Summary: Direct gaze is an important communicative signal, but attenuated responses to it do not reliably differentiate infants with or without subsequent autism. Although infants with elevated likelihood of autism and subsequent diagnosis tend to look away quicker, this measure does not differentiate between the two elevated likelihood groups.
Article
Psychology, Educational
Linda Plantin Ewe, Mona Holmqvist, Sven Bolte
Summary: This study examines the impact of teachers' professional development of their relational competence with students with ADHD and/or ASD on teachers' and students' perceptions of their teacher-student relationships. The findings suggest that enhancing teachers' understanding of relational competence concerning students with neurodiversity will improve both their own perceptions and those of neurodiverse female students. However, directing teachers' focus towards one student group (ND students) risks diminishing teachers' attention towards other student groups, potentially explaining the poorer follow-up results among neurotypical boys.
EMOTIONAL AND BEHAVIOURAL DIFFICULTIES
(2023)
Article
Psychology, Developmental
Bahareh Afsharnejad, Marita Falkmer, Tanya Picen, Melissa H. Black, Tasha Alach, Anna Fridell, Cristina Coco, Kelly Milne, Jill Perry, Sven Bolte, Sonya Girdler
Summary: The study found that both autistic adolescents and their parents were satisfied with the social skills group training KONTAKT, with consistent improvements observed in adolescents' social understanding. Differences in positive reports were noted between high and low responders, but overall satisfaction with the training experience was high.
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
(2022)
