Patients’ and health care providers’ perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study

Brands, M.R.; Haverman, L.; Muis, J.J.; Driessens, M.H.E.; Meer, F. J. M. Van Der; Goedhart, G.; Meijer, S.; Jong, M. de; Bom, Johanna G. van der; Cnossen, M.H.; Fijnvandraat, K.; Gouw, S.C.

doi:10.1016/j.rpth.2023.100159

Cited by 2 publications

(1 citation statement)

References 26 publications

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“…Self-infusions of coagulation factor products or non-factor replacement products are expected. Because of such home treatment with remote advice from healthcare providers, high levels of self-care are required [9]. In recent years, home therapy for hemophilia has enabled patients and their families to manage the disease more independently.…”

Section: Introductionmentioning

confidence: 99%

Key Data Elements to Design Self-Care Mobile-Based Application for Hemophilia

Mohammadzadeh,

Dabiri,

Esmaeeli

2024

Front Health Inform

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Introduction: Mobile-based applications have become increasingly critical for healthcare delivery worldwide over the past few years. Developing a mobile application for hemophilia self-care is one of the tools that can provide helpful information about the disease, reminders, and treatment recommendations. This study aims to determine a minimum data set as the first step in developing a hemophilia self-care mobile application.Material and Methods: This descriptive-analytical study was conducted in 2023 and consisted of three steps. In the first step, relevant databases such as PubMed, Scopus, and Science Direct were reviewed. The data elements collected in the previous step were combined, and their validity was checked and confirmed in the second step. In the last step, all ten hematologists-oncologists at Imam Khomeini hospital complex, affiliated with Tehran university of medical sciences, completed a questionnaire to score the identified elements. Statistical analysis was performed using SPSS (Ver 16).Results: Based on global guidelines, published research, and specialists' feedback, the Minimum Data Set (MDS) for hemophilia management was developed. There are four main categories and twenty-three subclasses of identified elements, including demographic data (5 elements), disease management-related data (12 elements), educational data (3 elements), and technical capabilities (3 elements). To determine the importance of this MDS, we calculated the percentage points provided by specialists, which were 95.50% for demographic data, 96.45% for disease management-related data, 95.83% for educational data, and 95.83% for technical capabilities.Conclusion: Due to the lack of hemophilia’s MDS data at the national level, this study can serve as a turning point toward standardized data collection for this disease. By utilizing these precise, coherent, and standard data elements, hemophilia management and quality of life can be improved.

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Section: Introductionmentioning

confidence: 99%

Key Data Elements to Design Self-Care Mobile-Based Application for Hemophilia

Mohammadzadeh,

Dabiri,

Esmaeeli

2024

Front Health Inform

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Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study

Brands,

Janssen,

Cnossen

et al. 2023

Haemophilia

Self Cite

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IntroductionCare for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement.ObjectiveAssess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs.MethodsAll Dutch adolescents and young adults aged 12–25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple‐choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio‐demographic and disease‐related factors, treatment adherence, health‐related quality of life, and self‐efficacy.ResultsData of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12–14 year‐olds to 63% in 15–17 year‐olds. Nearly all post‐transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS‐Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9–29), compared to those ready for transition (11, IQR 9–16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs.ConclusionsNearly all post‐transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.

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Patients’ and health care providers’ perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study

Cited by 2 publications

References 26 publications

Key Data Elements to Design Self-Care Mobile-Based Application for Hemophilia

Key Data Elements to Design Self-Care Mobile-Based Application for Hemophilia

Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study

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