A5051145667- Childhood Cancer Survivors' Quality of Life
- Family Support in Illness
- Palliative Care and End-of-Life Issues
- Adolescent and Pediatric Healthcare
- Cancer survivorship and care
- Acute Lymphoblastic Leukemia research
- Economic and Financial Impacts of Cancer
- Glycosylation and Glycoproteins Research
- Proteoglycans and glycosaminoglycans research
- Cell Adhesion Molecules Research
- Fibroblast Growth Factor Research
- Immune Cell Function and Interaction
- Peptidase Inhibition and Analysis
- Monoclonal and Polyclonal Antibodies Research
- Ethics and Legal Issues in Pediatric Healthcare
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Immunotherapy and Immune Responses
- Interprofessional Education and Collaboration
- Health Systems, Economic Evaluations, Quality of Life
- Optimism, Hope, and Well-being
- Lymphoma Diagnosis and Treatment
- Family and Disability Support Research
- Mental Health and Patient Involvement
Radboud University Medical Center
2014-2020
Radboud University Nijmegen
2014-2020
University Medical Center
2019
Netherlands Comprehensive Cancer Organisation
2018
Amsterdam UMC Location University of Amsterdam
1993-1998
University of Amsterdam
1993-1997
Abstract Background Despite growing (inter)national awareness and appreciation, age‐specific care is still not always self‐evident accepted as standard of for adolescent young adult (AYA) cancer patients. It unknown whether long‐term AYA survivors have missed care, if so, which it regarding topics. Methods The Netherlands Cancer Registry (NCR) identified all (aged 18–39 years at initial diagnosis, 5–20 past diagnosis) in the Netherlands, who were invited to participate a population‐based,...
BACKGROUND The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in reduction or absence of empowerment. aims the current study were to assess levels empowerment associated (demographic, clinical, psychological) factors examine association between health‐related quality life (HRQOL) among AYA patients with cancer. METHODS Patients aged 18 35 years at time diagnosis who seen by 1 members specialized multidisciplinary team Radboud University...
High fear of cancer recurrence (FCR) is a frequently reported problem among patients. Previous research has shown that younger age associated with higher levels FCR. However, little attention been given to date about how FCR manifests itself adolescent and young adult (AYA) This study explores the prevalence, correlates high FCR, its association HRQoL in patients their late adolescence or adulthood.Seventy-three AYA patients, aged 18-35 years at diagnosis, consulted team Radboud University...
Peer support is an important unmet need among adolescent and young adult (AYA) cancer patients. This study was conducted to describe the use evaluation of a Dutch secure online community for AYA diagnosed with between 18 35 years.User statistics were collected Google analytics. Community members asked complete questionnaires on usefulness community. A content analysis using Linguistic Inquiry Word Count conducted.Between 2010 2017, received 433 (71% female; mean age at diagnosis 25.7 years;...
The current study determined the prevalence of severe fatigue in adolescent and young adult (AYA) cancer patients (aged 18-35 years at diagnosis) consulting a multidisciplinary AYA team comparison with gender- age-matched population-based controls. In addition, impact on quality life correlates severity were examined.AYAs (n = 83) completed questionnaires including Checklist Individual Strength (CIS-fatigue), Quality Life (QoL)-Cancer Survivor, Hospital Anxiety Depression Scale (reflecting...
•Based on objective data, AYAs’ employment and financial outcomes are significantly affected compared with matched controls.•AYAs were more often unemployed their controls 1 5 years after diagnosis.•AYAs received disability benefits diagnosis. BackgroundAdolescent young adult (AYA) cancer survivors, 18-39 at initial diagnosis, self-report negative consequences of (treatment) for career. Less is known, however, about the impact outcomes. This study examines AYA survivors nationwide...
Patient-centered care focuses on aligning healthcare with a person's values and preferences to support their health life goals. This approach is especially crucial among adolescents young adults (AYAs-with primary cancer diagnosis between the ages of 18 39) facing an uncertain or poor prognosis (UPCP), whose needs differ from those undergoing curative treatment. study aims gain insights AYAs UPCP, informal caregivers, professionals (HCPs) define optimal patient-centered identify barriers its...
Expression of CD44, particularly certain splice variants, has been linked to tumor progression and metastasis formation in a number different animal human cancers. Because cutaneous melanoma is among the most aggressive cancers, we explored expression CD44 isoforms (CD44v) lesions melanocytic progression. In addition, by RT-PCR FACS analysis assessed CD44v RNA species cell surface cultured melanocytes isolated from foreskin panel 2 non-, sporadically highly metastatic lines. We observed that...
This study aimed to identify health-related quality of life (HRQoL) issues relevance for adolescent and young adult (AYA) cancer patients, the perception relevant HRQoL AYA in generalby health care professionals (HCP), discrepancies between identified by AYAs HCP. Dutch aged 18–35 years at time diagnosis (N = 83) HCPs 34) involved oncology were invited complete Quality Life Cancer Survivors questionnaire. rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders,...
Purpose: Negative impact of cancer on sexuality is widely known. In adolescents and young adults with (AYA; 15–39 years), treatment can even have a bigger as it may interfere sexual development. AYAs report unmet psychosexual needs, like inadequate support from health care professionals (HCPs). The aim this study was to determine preferences regarding communication about intimacy examine discrepancies between AYA HCP. Methods: A cross-sectional survey conducted among HCPs in the Netherlands....
Sexual health is an important aspect of quality-of-life for adolescent and young adult (AYA) patients with cancer. AYAs report a need information about sexual but experience lack communication their healthcare provider. It known that difficult theme providers to discuss. This study aims gain insight into perspectives in facilitating AYAs' needs regarding health. A qualitative was performed. Six doctors eight nurses from Dutch hospitals, specialized AYA care, participated semi-structured...
Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, lack of centralized care, age-adjusted expertise, follow-up care. This group presents with a unique spectrum cancers, distinct tumor biology, risk factors, developmental challenges, treatment regimens that differ children older adults. It is imperative for advances the field AYA oncology to pool data sources across institutions create large cohorts address many pressing questions remain unanswered this...
Abstract Background Including the lived experience of patients in research is important to improve quality and outcomes cancer studies. It challenging include adolescents young adults (AYAs) studies this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little known about involving these scientific research. However, by including their experiences during multiple phases research, study improves therefore also healthcare life unique patient group. We first aimed...
Purpose: Participatory design (PD) is a collective creative process involving designers and nondesigners. There limited reporting on the experience of using PD for adolescent young adult (AYA) care. This study summarizes lessons from employing to develop care AYAs with cancer. Methods: A qualitative multiple-case method was conducted three processes addressing food (FfC), intimacy sexuality (I&S), integrative medicine (IM) in caring Results: Local key stakeholders, who were exposed problem...
Adolescent and young adult (AYA) cancer patients report a need for support to stay in contact with loved ones after diagnosis. In response this the Dutch AYA 'Young & Cancer' Care Network co-created mobile application 'AYA Match'. This study describes cocreational process, characteristics of users their expectations regarding app. 121 37 completed questionnaire. 68.6% reported 'staying contact' 'finding out about needs wishes 'their AYA' during time' as main reasons downloading application....