Review
Pediatrics
Muhammad Maarj, Andrea Coda, Louise Tofts, Cylie Williams, Derek Santos, Verity Pacey
Summary: This study aimed to synthesis outcome measures in interventional or prospective longitudinal studies of children with Generalised Joint Hypermobility (GJH) and associated lower limb symptoms. The results showed a lack of agreed sets of outcome measures used for these children.
Review
Dentistry, Oral Surgery & Medicine
Motaz Assas, Paswach Wiriyakijja, Stefano Fedele, Stephen Porter, Richeal Ni Riordain
Summary: XQ has been found to have the highest potential to capture changes in RIX according to COSMIN guidelines. Additional validation studies are required to further understand the methodological quality of the XI, GRIX, and XeQoLS.
Review
Multidisciplinary Sciences
Sherindan Ayessa Ferreira de Brito, Aline Alvim Scianni, Paula da Cruz Peniche, Christina Danielli Coelho de Morais Faria
Summary: This systematic review aims to investigate the measurement properties and clinical utility of measurement tools used in telerehabilitation for individuals with neurological diseases. The review will follow the PRISMA statement and utilize various databases for electronic searches. The methodological quality and clinical utility of the tools will be assessed using the COSMIN checklist and a clinical utility scale. The findings of this review will be valuable for healthcare professionals in selecting appropriate measurement tools and planning future research studies.
Article
Medicine, General & Internal
Erik Berntorp, Kathelijn Fischer, Daniel P. Hart, Maria Elisa Mancuso, David Stephensen, Amy D. Shapiro, Victor Blanchette
Summary: Haemophilia A and B are rare congenital disorders caused by deficiency of clotting factors, leading to symptoms such as bleeding and joint disease. With advancements in treatment, individuals with haemophilia can now expect almost normal life expectancy and quality of life, although the development of inhibitory antibodies remains a major challenge for some patients. Gene therapy for haemophilia is progressing and may soon become a reality.
NATURE REVIEWS DISEASE PRIMERS
(2021)
Article
Medicine, General & Internal
Laura Hoffmann, Carina Voellm, Marie Bernard, Astrid Fink, Matthias Richter, Britta Dawal
Summary: This study aimed to assess the theoretical framework of social participation through qualitative research with experts and parents. The concept of social participation consists of subjective and objective components, with experts focusing on the subjective level and parents emphasizing normative expectations. Capturing the subjective component requires suitable measurements.
Review
Dermatology
M. Ingmar van Raath, Sandeep Chohan, Albert Wolkerstorfer, Chantal M. A. M. van der Horst, Jacqueline Limpens, Xuan Huang, Baoyue Ding, Gert Storm, Rene R. W. J. van der Hulst, Michal Heger
Summary: The quality and reliability of outcome measurement instruments for PWS treatment are lacking, with limited evaluation in PWS patients. There is insufficient evidence on content validity of the OMIs, and no studies on responsiveness, minimal important change, and cross-cultural validity. Additional assessment guided by a core domain set tailored to PWS is needed to improve outcome selection.
Article
Oncology
Aleksandra Kowaluk, Katarzyna Siewierska, Marie Choniawkova, Petr Sedlacek, Krzysztof Kalwak, Iwona Malicka
Summary: This study aimed to assess the level of physical activity (PA) and quality of life of cancer-treated children, depending on their place of residence (Poland vs. the Czech Republic, where incidence and mortality rates of childhood malignancies are similar). The study showed significant differences in PA levels between Polish and Czech children. Physically active children engaging in more frequent PA reported higher physical performance, higher energy levels, and less mood disturbance. Our study emphasized the importance of promoting tailored PA programs for cancer-treated children to improve well-being and quality of life.
Article
Dermatology
Janine Topp, Christian Apfelbacher, Sonja Stander, Matthias Augustin, Christine Blome
Summary: This systematic review provides an update on measurement properties of patient-reported outcome measures for pruritus. The review includes 41 studies evaluating 38 different measures, with mixed results in the methodological quality of the studies. It identifies the most appropriate measures for assessing pruritus severity and pruritus-specific health-related QOL.
JOURNAL OF INVESTIGATIVE DERMATOLOGY
(2022)
Review
Oncology
Surbhi Singhal, James Dickerson, Michael J. Glover, Mohana Roy, Michelle Chiu, Timothy Ellis-Caleo, Gavin Hui, Carla Tamayo, Nele Loecher, Hong-Nei Wong, Lauren C. Heathcote, Lidia Schapira
Summary: This systematic review evaluates the implementation and effectiveness of patient-reported outcome measurements (PROMs) in cancer survivorship care. The review found that cancer survivors and healthcare providers have favorable impressions of PROMs, and PROM implementation can improve health outcomes for select patient populations.
JOURNAL OF CANCER SURVIVORSHIP
(2022)
Review
Agriculture, Dairy & Animal Science
Annabelle E. Fulmer, Linda J. Laven, Kate E. Hill
Summary: Quality of life (QoL) assessment tools for companion animals are essential in veterinary medicine. This study compared nine generic QoL assessment tools designed for dogs and cats, highlighting the uniqueness of each tool in terms of design, evaluation, and analysis. While each tool was unique, they assessed similar aspects of QoL, such as activity level, desire for interaction, and appetite in dogs and cats.
Article
Critical Care Medicine
Amira Allahham, Matthew N. Cooper, Enrique Mergelsberg, Mark W. Fear, Lisa J. Martin, Fiona M. Wood
Summary: This study investigated the quality of life assessment of pediatric patients with non-severe burns and found that parents scored lower on psychosocial function for younger and higher socioeconomic status patients compared to their children. Additionally, it was found that there was a significant difference between female patients and their parents' scores in the early recovery cohort, and parents rated older patients lower than themselves in the late recovery cohort. Therefore, age, socioeconomic status, and gender may contribute to the discrepancy in quality-of-life assessments between parents and patients.
Article
Public, Environmental & Occupational Health
Dercia Materula, Genevieve Currie, Xiao Yang Jia, Brittany Finlay, Catherine Richard, Meridith Yohemas, Gina Lachuk, Myka Estes, Tammie Dewan, Sarah Maceachern, Nadine Gall, Ben Gibbard, Jennifer D. Zwicker
Summary: This study examined the impact of a care coordination (CC) project on children with neurodevelopmental disability and medical complexity (NDD-MC) and their families. The study used mixed methods and multiple case designs to measure outcomes such as quality of life and resource use. The findings contribute to understanding how CC as an intervention affects the care integration of children with NDD-MC. Evaluation studies that consider the diverse impacts of CC interventions are essential for informing practice and policy for this population.
FRONTIERS IN PUBLIC HEALTH
(2023)
Article
Critical Care Medicine
Amira Allahham, Matthew N. Cooper, Mark W. Fear, Lisa Martin, Fiona M. Wood
Summary: This retrospective cohort study investigates the quality of life outcomes in pediatric patients with non-severe burns in Western Australia. The results show that about 16% of children had critically low quality of life scores at three months after the burn, and these scores were influenced by age, socioeconomic status, and burn cause.
Article
Medicine, General & Internal
Julie M. Marchant, Anne L. Cook, Jack Roberts, Stephanie T. Yerkovich, Vikas Goyal, Daniel Arnold, Hannah E. O'Farrell, Anne B. Chang
Summary: This study investigated the experiences of parents of children with bronchiectasis, revealing impaired quality of life and a high burden, emphasizing the need for improved education to enhance knowledge and awareness.
JOURNAL OF CLINICAL MEDICINE
(2021)
Article
Clinical Neurology
Raquel D. Thalheimer, Vanessa L. Merker, K. Ina Ly, Amanda Champlain, Jennifer Sawaya, Naomi L. Askenazi, Hamilton P. Herr, Jennifer L. W. Da, Justin T. Jordan, Alona Muzikansky, Elizabeth Morehouse Pearce, Fernanda H. Sakamoto, Jaishri O. Blakeley, R. Rox Anderson, Scott R. Plotkin
Summary: The study assessed the reliability and variability of digital calipers, 3D photography, and high-frequency ultrasound for measuring cutaneous neurofibromas in NF1 patients. The results showed excellent reliability of HFUS and 3D photography, while digital calipers also demonstrated good reliability in measuring cNF.
Article
Hematology
Manuel Carcao, Laura Zunino, Nancy L. Young, Saunya Dover, Vanessa Bouskill, Pamela Hilliard, Victoria E. Price, Victor S. Blanchette
Article
Health Care Sciences & Services
Catherine Lambert, N' Dogomo Meite, Ibrahima Sanogo, Sebastien Lobet, Cedric Hermans, Severine Henrard, Victor Blanchette, Nancy L. Young
HEALTH AND QUALITY OF LIFE OUTCOMES
(2020)
Letter
Health Care Sciences & Services
John Eric Chaplin, Holger Muehlan, Rob Arbuckle
QUALITY OF LIFE RESEARCH
(2020)
Article
Health Care Sciences & Services
Skye P. Barbic, Nancy L. Young, Koyo Usuba, Elizabeth Stankiewicz
Summary: This study utilized Rasch Measurement Theory (RMT) methods to assess the psychometric properties of Aaniish Naa Gegii: the Children's Health and Wellbeing Measure (ACHWM) and Qanuippit. The results indicated that these measurement tools were able to effectively capture the full range of the concept of interest in each domain and meet the criteria for unidimensional and invariant measurement.
JOURNAL OF CLINICAL EPIDEMIOLOGY
(2022)
Article
Psychology, Developmental
Vanessa Goncalves Coutinho de Oliveira, Laura Cardoso Balau, Lucas Simoes Arrebola, Nancy Lynn Young, Liu Chiao Yi
Summary: This study translated and cross-culturally adapted the Activity Scale for Kids (ASK) questionnaire into Brazilian Portuguese and assessed its validity and reliability. The results showed that the Brazilian Portuguese version of ASK has good reliability, internal consistency, and moderate correlation with the Pediatric Quality of Life Inventory (PedQL). This is significant for evaluating the functioning of children and adolescents with disabilities.
CHILD CARE HEALTH AND DEVELOPMENT
(2023)
Article
Hematology
Aubrey S. Chiu, Victor S. Blanchette, Maru Barrera, Pamela Hilliard, Nancy L. Young, Audrey Abad, Brian M. Feldman
Summary: The study indicates a strong correlation between social participation and self-perception among boys with hemophilia, as well as significant influence from social support provided by parents, teachers, classmates, and close friends.
RESEARCH AND PRACTICE IN THROMBOSIS AND HAEMOSTASIS
(2021)
Review
Social Sciences, Interdisciplinary
Sarah C. Hunt, Nancy L. Young
Summary: This study investigated the blending of Western focus groups and Indigenous sharing circles for the study of Indigenous children's health, proposing recommendations for adapting focus groups to include elements of sharing circles. Analysis of 29 articles revealed successful blending of sharing circles and focus group methods in recent Indigenous children's health literature.
INTERNATIONAL JOURNAL OF QUALITATIVE METHODS
(2021)
Article
Hematology
Meghan Pike, Ashley Chopek, Nancy L. Young, Koyo Usuba, Mark J. Belletrutti, Robyn McLaughlin, Nancy Van Eyk, Amanda Bouchard, Kristen Matteson, Victoria E. Price
Summary: A new tool, the Adolescent Menstrual Bleeding Questionnaire (aMBQ), was developed and validated for assessing health-related quality of life in adolescents with heavy menstrual bleeding. The aMBQ demonstrated good validity and reliability, with strong correlation and substantial test-retest reliability. It was able to accurately identify adolescents with heavy menstrual bleeding based on a score threshold of >30.
RESEARCH AND PRACTICE IN THROMBOSIS AND HAEMOSTASIS
(2021)
Article
Health Policy & Services
Sabrina Lopresti, Noreen D. Willows, Kate E. Storey, Tara-Leigh F. Mchugh
Summary: The Indigenous Youth Mentorship Program (IYMP) is a health promotion program designed for elementary school students in Indigenous school communities in Canada with the aim of improving children's health and wellbeing. The key characteristics for successful IYMP delivery include a sense of ownership, inclusion of Indigenous Elders/knowledge keepers, establishing trusting relationships, open communication, and providing adequate program supports.
HEALTH PROMOTION INTERNATIONAL
(2021)
Article
Hematology
Saunya Dover, Nancy L. Young, Victor S. Blanchette, Robert J. Klaassen, Anthony K. Chan, Cindy Wakefield, Vanessa Bouskill, Manuel Carcao, Mark Belletrutti, Aisha A. K. Bruce, Victoria E. Price
Summary: This study aimed to assess the impact of hemophilia on families and develop a new tool, the Hemophilia Family Impact Tool (H-FIT), which was validated in a sample of parents of boys with hemophilia relative to the Pediatric Quality of Life Family Impact Module (PedsQL-FIM). Results showed that the H-FIT had strong correlations with the PedsQL-FIM across all ages, with a significant difference between the mean scores for parents of boys using extended half-life factor compared to standard half-life factor. The H-FIT has good preliminary measurement properties and may be responsive to changes in therapy associated with a decreased burden of administration.
RESEARCH AND PRACTICE IN THROMBOSIS AND HAEMOSTASIS
(2021)
Article
Hematology
Victoria E. Price, Saunya Dover, Victor S. Blanchette, Robert J. Klaassen, Mark Belletrutti, Aisha A. K. Bruce, Anthony K. Chan, Cindy Wakefield, Manuel Carcao, Vanessa Bouskill, Nancy L. Young
Summary: This study updated the Canadian Hemophilia Outcomes-Kids' Life Assessment Tool and validated its reliability and validity in boys with hemophilia. The revised CHO-KLAT v3.0 demonstrated moderate to strong correlations with the Pediatric Quality of Life Core Module and showed good test-retest reliability. CHO-KLAT v3.0 is considered a reliable and valid tool for measuring health-related quality of life in boys with hemophilia receiving standard or EHL FCs.
RESEARCH AND PRACTICE IN THROMBOSIS AND HAEMOSTASIS
(2021)
Meeting Abstract
Hematology
Meghan Pike, Ashley Chopek, Nancy Young, Koyo Usuba, Mark J. Belletrutti, Robyn McLaughlin, Nancy Van Eyk, Amanda Bouchard, Kristen Matteson, Victoria E. Price
Review
Social Sciences, Interdisciplinary
Andrew Forbes, Stephen Ritchie, Jennifer Walker, Nancy Young
INTERNATIONAL JOURNAL OF QUALITATIVE METHODS
(2020)
Article
Education & Educational Research
Koyo Usuba, Julia Russell, Stephen D. Ritchie, Debbie Mishibinijima, Mary Jo Wabano, Lawrence Enosse, Nancy L. Young
JOURNAL OF OUTDOOR AND ENVIRONMENTAL EDUCATION
(2019)
Article
Hematology
Koyo Usuba, Victoria E. Price, Victor Blanchette, Audrey Abad, Carmen Altisent, Loretta Buchner-Daley, Jorge D. A. Carneiro, Brian M. Feldman, Kathelijn Fischer, John Grainger, Susanne Holzhauer, Koon-Hung Luke, Sandrine Meunier, Margareth Ozelo, Ling Tang, Sandra V. Antunes, Paula Villaca, Cindy Wakefield, Gilian Wharfe, Runhui Wu, Nancy L. Young
RESEARCH AND PRACTICE IN THROMBOSIS AND HAEMOSTASIS
(2019)
