The personalized oncology group is currently concentrating on two principal research lines: (1) the short-, long-term and late consequences of cancer at adolescent and young adult age; (2) diagnosis, treatment, outcome and health-related quality of life issues of people with sarcoma.
Adolescents and Young Adults
Adolescent and Young Adult (AYA) cancer patients, diagnosed with cancer between the age of 18-39 years old, suffer from delay in diagnosis, lack of centralization of care, age-adjusted expertise and follow-up care. This group presents with a unique spectrum of cancers, distinctive tumor biology, cancer risk factors, developmental challenges and treatment regimens that are different compared to children. There will be a burden of medical and psychosocial problems, that could result in compromised health-related quality of life and reduced life expectancy. Findings derived from childhood cancer survivors cannot be extrapolated to AYA. It is imperative for advances in the field of AYA oncology to pool data sources (patient-reported outcomes, clinical, genetic and biological data) across institutions and create large cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population. We are currently running the SURVAYA study to examine the long-term consequences of cancer at AYA age among people who were diagnosed 5-20 years ago. Additionally, we are working on a unique nationwide infrastructure (COMPRAYA) for research into the prevalence, predictive and prognostic markers (risk factors) and underlying mechanisms of (age-specific) medical and psychosocial outcomes, and to facilitate the development and testing of (early) intervention strategies to improve these outcomes for patients (at risk). We will establish a prospective observational cohort of 1-year AYA cancer survivors followed prospectively for 20+ years or until death. Within COMPRAYA we will pay special attention to AYA cancer patients living with life-limiting cancer: how does this diagnosis impacts normal (daily) life and what are the challenges they face within the health care system?
Health-related quality Of Life In patients with advanced Soft TIssue sarcomas treated with Chemotherapy: the HOLISTIC study
Chemotherapy is the mainstay of treatment for patients with metastatic soft tissue sarcomas (STS). Treatment intent is usually palliative, aiming to improve symptoms, stabilize or reduce tumour-burden and extend life. Clinical trials for advanced STS have traditionally used radiological response, time to progression and survival as measures of treatment efficacy. Treatment decisions are often challenging due to modest response rates and potential adverse side-effects. Health-related quality of life (HRQoL) is at least equally- or more important than survival for many patients with advanced cancer. Systematically collecting HRQoL data during chemotherapy can provide greater insight into treatment efficacy from the patient perspective. The primary aims of this study are to evaluate HRQoL in patients with advanced STS treated with chemotherapy over time, explore the decision-making process and patient reflections post-treatment.
QUality of life and Experiences of Sarcoma Trajectories: the QUEST study
The prognosis of patients with rare cancers in general and sarcomas in particular suffers from delay in diagnosis. Routes to diagnosis have neither been studied in detail in larger numbers before, nor in a direct comparison between two countries with different health systems. Comprehensive assessment of diagnostic delays and its determinants, including demographic, clinical, psychosocial and health care system factors, is necessary to improve referral pathways and come to best practice and patient reported outcomes for sarcoma patients. This study aims to quantify diagnostic delay (including patient, general practitioner and system delay) and evaluates routes to diagnosis and referral to sarcoma expert centers in the Netherlands and England; to comprehensively evaluate risk factors of diagnostic delay; determine the association between diagnostic delay and outcomes (HRQoL, quality adjusted life years, patient satisfaction, TNM classification, time to local/distant relapse and overall survival); and to assess differences between both countries.
Incorporating the patient voice in sarcoma research: how can we assess health-related quality of life in this heterogeneous group of patients
There is limited high-quality HRQoL data in sarcoma. Previous studies have predominantly used generic HRQoL instruments, which cover some relevant issues but do not capture all the unique experiences of patients with sarcoma, and thus lack content validity. A sarcoma-specific questionnaire or validated items should be able to detect, with more sensitivity, side-effects, symptoms and problems with function that are particularly relevant to patients with different presentations and subtypes of sarcomas. Given the heterogeneity of the disease in terms of subtype, location, age and treatment, the development of a single sarcoma questionnaire is impossible. Therefore, we have started a study to develop standards of HRQoL measurement in the broad spectrum of patients with sarcoma. This is a collaborative project between the EORTC Quality of Life Group (QLG) and the EORTC Soft Tissue and Bone Sarcoma Group (STBSG).
Sarcoma Priority Setting Partnership Study
Research in sarcoma has historically been the domain of scientists and clinicians attempting to understand the disease in an effort to develop effective treatments. There is growing recognition of the importance of integrating patient perspectives (e.g., preferences, expectations, and expanded definitions of what constitutes “successful” outcomes) into clinical research. This evolution is reflected in the growth of patient-centered organizations and patient advocacy groups that seek to meaningfully integrate patients into the process of prioritizing research needs and creating alliances wherein patients and researchers can partner together to accomplish research goals. The group leaders are leading a project together with the patient advocacy group SPAEN aiming to identify the unanswered questions about sarcoma from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.