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PROactive cohort study
Patient Reported Outcomes in children and Adolescents with Chronic/life-threatening diseases and Tailored InterVentions in a digital Environment (PROactive) cohort study...
Description
Children with a chronic disease face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. In the long run, children with a chronic disease reach developmental milestones later than the...
General Design
- Type
- Cohort study
- Cohort type
- Clinical cohort, Population cohort
- Data collection type
- Retrospective, Prospective
- Design
- Longitudinal
- Design description
- PROactive is a care-based, questionnaire-driven cohort study focussing on mental well-being, psychosocial well-being and participation, with a life-course perspective using a continuous longitudinal approach. It encompasses children, adolescents, and young adults with chronic conditions across a wide age range and their parent(s). Depending on the timing of diagnosis, participants are included between the ages of 0 and 18. The study is conducted as a single-center cohort at the Wilhelmina Children’s Hospital.
- Start/End data collection
- 2016 (ongoing)
- Design paper
- The PROactive cohort study: rationale, design, and study procedures
- PID
- https://doi.org/10.34894/FXUGHW
Population
- Countries
- Netherlands (the)
- Regions
- Limburg, Zeeland, Zuid-Holland, Noord-Holland, Noord-Brabant, Flevoland, Utrecht, Gelderland, Overijssel, Drenthe, Friesland, Groningen
- Number of participants
- 3000
- Population age groups
- Infant (0-23 months), Child (2-12 years), Adolescent (13-17 years), Young adult (18-24 years)
- Inclusion criteria
- Age group inclusion criterion
- Hospital patient inclusion criterion
- Other exclusion criteria
- Proficiency in the Dutch language due to Dutch-language questionnaires.
Organisations
Lead organisations
Contributors
- dr. S.L. (Sanne) NijhofUniversity Medical Center Utrechts.l.nijhof@umcutrecht.nl
Principal Investigator
- dr. J.W. (Anne) HoefnagelsUniversity Medical Center Utrechtj.w.hoefnagels@umcutrecht.nl
Primary contact, Project leader
Available Data & Samples
Data categories
- Survey data
- Medical records
Areas of information
- Socio-demographic and economic characteristics
- Age/birthdate
- Sex/gender
- Marital/partner status
- Family and household structure
- Education
- Other socio-demographic and economic characteristics
- Lifestyle and behaviours
- Nutrition
- Physical activity
- Transportation
- Sleep
- Leisure activities
- Technological devices
- Other and unspecified lifestyle information
- Perception of health, quality of life, development and functional limitations
- Perception of health
- Quality of life
- Functional limitations
- Other perception of health, quality of life and functional limitation-related information
- Symptoms and signs
- Symptoms and signs involving cognition, perception, emotional state and behaviour (R40-R46)
- Physical measures and assessments
- Physical characteristics
- Muscles, skeleton and mobility
- Sensory and pain
- Cognition, personality and psychological measures and assessments
- Cognitive functioning
- Psychological distress and emotions
- Other psychological measures and assessments
- Life events, life plans, beliefs and values
- Life events
- Preschool, school and work life
- Preschool life
- School life
- Work life
- Other preschool, school or work life-related information
- Social environment and relationships
- Social network
- Social participation
- Social support
- Parenting and familial environment
- Other social environment characteristics
- Physical environment
- Housing characteristics
- Administrative information
- Identifiers
- Date and time-related information
- Questionnaire and interview-related information
Subpopulations
List of subpopulations for this resource...
| Name | Description | Number of participants | |
|---|---|---|---|
No results for current selection |
Collection events
List of collection events defined for this resource...
| Name | Description | Participants | Start end year | |
|---|---|---|---|---|
No results for current selection |
Networks
Part of networks...
Publications
Fatigue among children with a chronic disease: a cross-sectional study
Fatigue in childhood chronic disease
Impact of play restriction during the COVID-19 pandemic on mental well-being in children with a chronic condition
Paediatric short fatigue questionnaire, a 4-item fatigue questionnaire for children
Parent-Child Dyadic Coping and Quality of Life in Chronically Diseased Children
The Impact of the COVID-19 Outbreak on Mental Wellbeing in Children with a Chronic Condition Compared to Healthy Peers
The PROactive cohort study: rationale, design, and study procedures
Access conditions
The first version of our Data Request & Publication Guidelines is available (dataverseNL). We have outlined the terms and conditions under which data reuse will be permitted. A data request requires researchers to complete an application detailing th...
- Data access conditions
- general research use
- health or medical or biomedical research
- disease specific research
- Data use conditions
- research specific restrictions
- not for profit, non commercial use only
- collaboration required
- user specific restriction
- project specific restriction
- return to database or resource
- clinical care use
- Data access fee
- false
- Release type
- Periodically
- Release description
- Monthly
- Prelinked
- false
Funding & Acknowledgements
- Funding
- • PROactive start received in 2015 WKZ onderzoeksfonds grant (nr: R3939; duration April 2016-April 2021 • PROactive Consequences of COVID-19 received in 2022 the Elisabeth v Freyborg grant (nr: N/A; duration July 2020- June 2022) • PROactive extension to non-academic hospitals received in 2022 a ZonMw program quality of care grant (nr: 05160482120001; duration May 2022 – December 2024) • PROactive-YA (adolescents) received in 2023 a Taskforce for Applied Research SIA, (Dutch: Regieorgaan SIA) grant no. RAAK.PRO05.057; duration April 2024 – April 2028.
- Acknowledgements
- This research is part of the PROactive cohort. All data originates from children under treatment at the Wilhelmina Children's Hospital Utrecht (WKZ). We are grateful to everyone who participated in this research or worked on this project to make it possible. [Name relevant disease group representatives]