Hypoparathyroidism patients suffer a variety of complaints often leading to reduced quality of life. Currently, no specific standard instrument exists to measure corresponding disease manifestations. We therefore aimed to develop a disease-characteristic questionnaire for hypoparathyroid patients. We used an analytical-empirical approach for questionnaire construction based on retrospective analysis of four well-established but non-disease-specific questionnaires (Symptom Checklist 90, revised [SCL-90-R]; Giessen Complaint List [GBB]; Short-Form-36 Health Survey [SF-36]; von Zerssen Symptom List [B-L Zerssen]) and two additional unpublished or local questionnaires (SHGdQ and GPQ) in a German hypoparathyroidism self-help group ( = 60). Retrospective data were compared with corresponding general population norms. The new questionnaire was administered prospectively over 1 year to patients with postoperative hypoparathyroidism and two control groups to validate specificity. Exploratory factor analysis (EFA) and reliability testing were applied to identify relevant scales and reduce overlapping items. In the self-help group, SCL-90-R revealed elevated symptom load in four complaint areas ( = 0.003 to < 0.001). The SF-36 mental summary score ( < 0.001) and further scales were lowered. In the GBB, four of five scales ( = 0.009 to < 0.001) were elevated. In the B-L Zerssen, 6 of 24 items revealed complaint areas. Based on these findings, the new 40-item "Hypoparathyroid Patient Questionnaire" (HPQ 40) was developed, tested prospectively, and further analyzed. EFA revealed five scales (pain and cramps, gastrointestinal symptoms, depression and anxiety, neurovegetative symptoms, loss of vitality), all with Cronbach's alpha >0.7. The questionnaire was revised accordingly and shortened to 28 questions to avoid redundancy. We present a new disease-characteristic questionnaire for hypoparathyroidism patients. Prospective testing revealed five major complaint areas and promising psychometric properties. This questionnaire can be tested for usefulness in further clinical trials. © 2019 The Authors. published by Wiley Periodicals, Inc. on behalf of American Society for Bone and Mineral Research. © 2019 The Authors. published by Wiley Periodicals, Inc. on behalf of American Society for Bone and Mineral Research.
Download full-text PDF |
Source |
---|---|
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6957982 | PMC |
http://dx.doi.org/10.1002/jbm4.10245 | DOI Listing |
J Patient Rep Outcomes
August 2024
Ascendis Pharma, Inc., 1000 Page Mill Road, Palo Alto, CA, 94304, USA.
Background: Hypoparathyroidism is a rare endocrine disease frequently associated with serious physical and cognitive symptoms. This study's purpose was to understand the impacts of the phase 3 PaTHway clinical trial treatment, TransCon PTH, on patients' overall, physical, and cognitive hypoparathyroidism signs/symptoms and what patients consider meaningful improvement.
Methods: Individual telephone exit interviews were conducted with patients who recently completed the PaTHway trial blinded period.
Orphanet J Rare Dis
July 2024
Department of Translational Medicine, Medical Genetics and Genomic Medicine Area, Universidade Estadual de Campinas (Unicamp), Tessália Vieira de Camargo Street, 126, Campinas, Sao Paulo, SP, 13083-887, Brazil.
Background: The 22q11.2 Deletion Syndrome (22q11.2 DS) presents unique healthcare challenges for affected individuals, families, and healthcare systems.
View Article and Find Full Text PDFAutism Res
October 2024
Clinical Psychology Unit for Intellectual and Developmental Disabilities, Faculty of Psychology and Educational Sciences, University of Geneva, Geneva, Switzerland.
Loneliness is a negative emotional experience that can stem from a gap between desires and the reality of social relationships. It is also a predictor of mental health. Loneliness is therefore important to investigate in neurodevelopmental populations known for having difficulties in the social sphere.
View Article and Find Full Text PDFEur J Psychotraumatol
May 2024
Department of Psychiatry, Dalhousie University, Halifax, Canada.
22q11 Deletion Syndrome (22q11DS) is the most common microdeletion syndrome with broad phenotypic variability, leading to significant morbidity and some mortality. The varied health problems associated with 22q11DS and the evolving phenotype (both medical and developmental/behavioural) across the lifespan can strongly impact the mental health of patients as well as their caregivers. Like caregivers of children with other chronic diseases, caregivers of children with 22q11DS may experience an increased risk of traumatisation and mental health symptoms.
View Article and Find Full Text PDFJ Allergy Clin Immunol Pract
August 2024
Division of Immunology and the Children's Research Center, University Children's, Hospital Zurich, University of Zurich, Zurich, Switzerland.
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!