Publications by authors named "Milou Reuvers"
Background: Digital Health Records (DHR) have become essential for managing patient data, including radiology and nuclear medicine reports. The wider adoption of DHR globally presents an opportunity to improve patient engagement and empowerment through effective access and sharing of imaging investigations. This review aims to synthesize literature on views, experiences, expectations, and preferences of oncology patients and healthcare professionals (HCP) when accessing imaging via DHR.
View Article and Find Full Text PDFPatient-centered care focuses on aligning healthcare with a person's values and preferences to support their health and life goals. This approach is especially crucial among adolescents and young adults (AYAs-with a primary cancer diagnosis between the ages of 18 and 39) facing an uncertain or poor cancer prognosis (UPCP), whose care needs differ from those undergoing curative treatment. This study aims to gain insights from AYAs with a UPCP, their informal caregivers, and healthcare professionals (HCPs) to define optimal patient-centered care and identify barriers to its implementation.
View Article and Find Full Text PDFBackground: In adolescents and young adults (AYAs) with cancer, the importance of patient-centered research outcomes is increasingly acknowledged and there is a need for consensus on the most relevant outcomes. This review provides a comprehensive overview of outcomes relevant to AYAs with cancer in order to develop an AYA-specific core outcome set (COS) as part of the European project STRONG-AYA.
Methods: A literature search was conducted to identify relevant articles in five databases.
Background: Low-grade gliomas (LGG) are among the most frequently occurring tumors in adolescent and young adult (AYA) patients (aged 18-39 years old at primary diagnosis). These tumors have a variable prognosis, presenting challenges for patients in shaping their future. This study aimed to identify the age-specific experiences and needs of AYA patients with LGG in their daily lives.
View Article and Find Full Text PDFArticle Synopsis
- Diagnosing rare cancers is tough and often takes a long time, according to a study that examined the experiences of 1541 patients in The Netherlands from GP visits to final diagnoses.
- Most patients (76.0%) started with a GP consultation, and while 76.3% were referred to a hospital within three months, 32.1% received incorrect diagnoses that led to unnecessary treatments.
- The study found significant differences in diagnosis timelines between solid and non-solid tumors, with patients experiencing varying waits; improving research on symptoms and clinical networks could help reduce these delays.
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 reviews the perspectives of Turkish, Moroccan, Surinamese, and Dutch-Caribbean cancer patients in the Netherlands regarding diagnosis, treatment, and prognosis.
- A systematic literature review highlighted four main themes: diagnosis disclosure, communication practices, information provision, and decision-making, revealing significant differences between Turkey and the Netherlands.
- There is a notable lack of research on the views of Surinamese and Dutch-Caribbean patients, emphasizing the need for further studies to improve communication and care for all ethnic groups.
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.*
Article Synopsis
- AYAs (Adolescents and Young Adults) with cancer aged 15 to 39 have specific challenges that also impact their informal caregivers, but there’s limited info on this issue.
- The scoping review revealed that caregivers experience burdens across several areas, including physical health issues, psychological stress, social isolation, and financial strains, as well as unmet needs.
- Future studies should focus on these unique caregiver challenges, considering the diverse roles of caregivers (like parents or friends) to improve support for both AYAs and their caregivers.
Article Synopsis
- 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.
Article Synopsis
- The study focused on understanding the participation of adolescents and young adults with cancer (AYAs) in patient-reported outcome research, as their long-term health outcomes are not well understood.
- A cross-sectional cohort study was conducted with 4,010 AYAs, showing a 36% participation rate; factors like gender, socio-economic status, and type of cancer affected participation levels.
- Effective recruitment strategies, such as including a paper questionnaire and sending reminders, increased response rates, highlighting the need to engage AYAs in research to improve representativeness in future studies.
Article Synopsis
- Adolescent and young adult (AYA) cancer patients feel a strong need to maintain connections with loved ones post-diagnosis, prompting the creation of the 'AYA Match' mobile app by the Dutch AYA 'Young & Cancer' Care Network.* -
- A survey revealed that over 68% of loved ones downloaded the app to enhance communication and understand the needs of their AYA family members, while 41% of AYA patients hoped it would help express their wants and needs.* -
- Both groups share similar expectations for the app, aiming to 'normalize' communication and foster empathy, suggesting that 'AYA Match' could effectively address challenges related to support and understanding.*
Article Synopsis
- * A study with 23 sarcoma patients revealed significant physical challenges like fatigue, pain, and respiratory problems, as well as mental health concerns like body image issues and fear of recurrence.
- * These findings highlight the substantial physical, mental, and social obstacles faced by these patients, which can inform tailored supportive care and improve HRQoL measurement strategies for sarcoma patients.