Lopend onderzoek

Health-related quality of life and late effects among SURVivors of cancer in Adolescence and Young Adulthood: The SURVAYA study

Introduction

Adolescent and young adult (AYA) cancer survivors, diagnosed between 18-39 years, much more than children, suffer from delay in diagnosis, lack of centralization of care, age-adjusted expertise and follow-up care. The distribution of tumor types, biology, risk factors, developmental challenges and treatment regimens are different in AYAs compared to children. Therefore findings derived from childhood cancer survivors cannot be extrapolated to AYAs. Likewise, several large tumor-specific cohort studies exist that do not specifically address unique AYA age-specific issues. Globally, so far, the identification of AYA patient subgroups that might be more susceptible to poor health outcomes has not been systematically addressed. The role of sociodemographic and treatment-associated risks, external exposures (e.g. lifestyle) and host factors (e.g. genetic); or combinations of influences for impaired (age-specific) health outcomes, remains largely unknown. Understanding who is at risk and why, will support the development of evidence-based AYA prevention, treatment and supportive care programs and guidelines.

Goal

To examine the prevalence, risk factors and mechanisms of impaired health outcomes (health-related quality of life and late effects) among a population-based sample of AYA cancer survivors.

Questions & Hypotheses

  1. What is the prevalence of impaired (age-specific) medical (e.g. second tumor) and psychosocial (e.g. social isolation) health outcomes among AYA cancer patients?
  2. Who is at risk for impaired health outcomes? What is the role of characteristics of the individual (e.g. age, sex, cultural background, partner status, educational level, tumor type, disease stage, comorbid conditions), characteristics of the environment (e.g. cancer treatment, lifestyle), and genetic and biological factors (e.g. family history) on (age-specific) medical and psychosocial health outcomes?
  3. Why is a person at risk? What are the (underlying) mechanisms of poor health outcomes (e.g. coping style, genetic makeup, cortisol levels, inflammation)?

(Clinical) Relevance

Knowledge about the type of late effects of AYA cancer and therapy, groups at risk and underlying mechanisms enable the design of treatment protocols and intervention strategies that will increase survival (more cure) and minimize harmful health effects and improve ultimate outcome (a better quality of life for patients).
The data collected through our infrastructure will help to educate AYA cancer survivors about the potential impacts of cancer diagnosis and treatment on their health and implementing programs for the prevention and early detection of late effects (less cancer).

Project details

Project duration
2 years

Foundation
KWF Kankerbestrijding; Nederlandse Organisatie voor Wetenschappelijk Onderzoek (NWO)

Research partners
All university medical centers, NKI-AvL, IKNL

Contacts

Project leads
Dr. O. Husson - Nederlands Kanker Instituut – Antoni van Leeuwenhoek Ziekenhuis (NKI-AvL) - Afdeling Psychosociaal Onderzoek en Epidemiologie
Prof. W.T.A. van der Graaf - Nederlands Kanker Instituut – Antoni van Leeuwenhoek Ziekenhuis (NKI-AvL) - Afdeling Medische Oncologie

Project organization 
Dr. Olga Husson
Drs. Carla Vlooswijk

Contact
Dr. Olga Husson (ayanationaal@iknl.nl)

COMPRAYA: Dutch nationwide infrastructure for COMPRehensive health outcome and intervention research among patients with Adolescent and Young Adult cancer

Introduction

Adolescent and young adult (AYA) cancer patients, diagnosed between 18-39 years, much more than children, suffer from delay in diagnosis, lack of centralization of care, age-adjusted expertise and follow-up care. The distribution of tumor types, biology, risk factors, developmental challenges and treatment regimens are different in AYAs compared to children. Therefore findings derived from childhood cancer survivors cannot be extrapolated to AYAs. Likewise, several large tumor-specific cohort studies exist that do not specifically address unique AYA age-specific issues such as: (1) Age-specific health outcomes like fertility, late toxicity, family functioning, employment; (2) Genetic risk factors and AYA tumor genetics; (3) Tumor types with an incurable, protracted behaviour at this young age;  (4) Age-adjusted early interventions

Goal

The aim of our project is to create a patient-centered nationwide resource (COMPRAYA) for comprehensive research into the predictive and prognostic markers (risk factors) and underlying mechanisms of (age-specific) health outcomes, and to develop and test (early) intervention strategies to improve these outcomes among AYA cancer survivors (at risk).

Questions & Hypotheses

  1. What is the prevalence of impaired (age-specific) medical (e.g. second tumor) and psychosocial (e.g. social isolation) health outcomes among AYA cancer patients?
  2. Who is at risk for impaired health outcomes? What is the role of characteristics of the individual (e.g. age, sex, cultural background, partner status, educational level, tumor type, disease stage, comorbid conditions), characteristics of the environment (e.g. cancer treatment, lifestyle), and genetic and biological factors (e.g. family history) on (age-specific) medical and psychosocial health outcomes?
  3. Why is a person at risk? What are the (underlying) mechanisms of poor health outcomes (e.g. coping style, genetic makeup, cortisol levels, inflammation)?

(Clinical) Relevance

Knowledge about the type of late effects of AYA cancer and therapy, groups at risk and underlying mechanisms enable the design of treatment protocols and intervention strategies that will increase survival (more cure) and minimize harmful health effects and improve ultimate outcome (a better quality of life for patients).

The data collected through our infrastructure will help to educate AYA cancer survivors about the potential impacts of cancer diagnosis and treatment on their health and implementing programs for the prevention and early detection of late effects (less cancer).

Translation / Implementation goals

We will create a unique nationwide resource (COMPRAYA) for comprehensive evaluation of health outcomes and determinants among AYA cancer patients. We will use an innovative prospective design called the ‘cohort multiple randomized controlled trial’ (cmRCT), combining features from both randomized controlled trials (randomization, systematic evaluation, validation of new prognostic and predictive markers and interventions) and observational cohort studies (standardized data collection, monitoring, follow-up). The cmRCT design allows multidisciplinary small and smart (randomized) interventions to be conducted simultaneously. Patients can participate in multiple non-conflicting studies at the same time, while the non-selected patients function as control group of the same age- and sex.

Project details

Project duration
5 years

Foundation
KWF Kankerbestrijding

Research partners
All Dutch university medical centers, NKI-AvL, IKNL, PALGA, PHARMO

Contacts

Project leads

Prof. Winette van der Graaf (NKI-AvL - project lead)
Dr. Olga Husson (NKI-AvL – projectmanager)
Principal Investigators: Dr. Olga Husson (NKI-AvL), Prof. Marjolijn Ligtenberg (Radboudumc), Prof. Lonneke van de Poll-Franse (NKI-AvL), Prof. Jourik Gietema (UMCG), Prof. Judith Prins (Radboudumc), Prof. Martin van den Bent (ErasmusMC), Drs. Mies van Eenbergen (IKNL)

Project organization
All Dutch university medical centers, NKI-AvL, IKNL

Contact
Prof. Winette van der Graaf and Dr. Olga Husson (ayanationaal@iknl.nl)

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