Publications by authors named "Vivian W G Burgers"
Article Synopsis
- - The study examines the challenges faced by informal caregivers of adolescent and young adult (AYA) cancer patients with uncertain or poor prognoses (UPCP), highlighting the emotional and physical stress experienced by parents, siblings, friends, and partners.
- - Caregivers reported significant issues such as sleep problems, fear, loss, and altered family dynamics, which affected their relationships and social interactions.
- - Despite the high level of caregiver burden, the study suggests that tailored interventions considering the unique needs of this age group could help alleviate some of the challenges faced by these caregivers.
Article Synopsis
- * Through interviews with 46 AYAs, four key pillars for a positive healthcare experience were identified: trust, tailored communication, an empathetic attitude, and proactive care.
- * The findings suggest that both age-specific issues and those related to the cancer prognosis must be addressed in clinical practice to improve care, indicating a need for better training and resources for healthcare professionals while empowering AYAs in managing their health.
Article Synopsis
- The study explores the importance of involving adolescents and young adults (AYA) with uncertain and poor cancer prognoses (UPCP) as partners in health research, documenting their experiences and the impact of their involvement.* -
- Six AYAs participated in various research roles, such as initiating study topics, conducting interviews, and analyzing data, ensuring the relevance of the research to their peers.* -
- Involving AYAs in research benefited both the study outcomes and the participants, who felt valued and understood, while also presenting challenges that researchers should proactively address.*
Introduction: Adolescents and young adults with an uncertain or poor cancer prognosis (UPCP) are confronted with ongoing and unique age-specific challenges, which forms an enormous burden. To date, little is known about the way AYAs living with a UPCP cope with their situation. Therefore, this study explores how AYAs with a UPCP cope with the daily challenges of their disease.
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- A lot of young adults aged 18-39 with serious cancer are living longer because of new treatments, but they still face many daily challenges.
- Researchers interviewed 46 young cancer patients to understand their experiences and found that many feel inferior, lonely, and uncertain about the future.
- The study aims to improve care for these patients by focusing on their emotional struggles and how they see themselves in life.
A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".
Res Involv Engagem
July 2022
Background: Including the lived experience of patients in research is important to improve the quality and outcomes of cancer studies. It is challenging to include adolescents and young adults (AYAs) cancer patients in studies and this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little is known about involving these AYAs in scientific research.
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- Uterine sarcomas, though rare, significantly affect patients' health-related quality of life (HRQoL) due to a range of physical, mental, and social issues, necessitating individualized treatment approaches.
- Interviews with 13 patients and 23 healthcare professionals revealed common concerns, including sexual dysfunction, fear of cancer recurrence, body image changes, and social relationship impacts, highlighting the complexities of living with this condition.
- The study suggests that existing HRQoL assessment tools like the EORTC QLQ-C30 and EORTC QLQ-EN24 are useful but should be expanded to include specific issues faced by uterine sarcoma patients, such as knowledge gaps and menopausal symptoms.
Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis.
View Article and Find Full Text PDFThe aim of this review was to determine the impact of primary aldosteronism on health-related quality of life (HRQoL) and mental health. We performed a systematic literature search up to July 2017 in six electronic databases. First, we screened the articles derived from this search based on title and abstract.
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