Rosemarie Jansen

Empowerment in adolescents and young adults with cancer: Relationship with health‐related quality of life

The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health‐related quality of life (HRQOL) among AYA patients with cancer.

Experiences of Parents and General Practitioners with End-of-Life Care in Adolescents and Young Adults with Cancer

This study aims to analyze the experiences of Dutch bereaved parents and general practitioners (GPs) with palliative care of AYAs (18-35 years) in the terminal stage. Fifteen parents and nine GPs involved with nine deceased AYAs filled out questionnaires and were interviewed by telephone, respectively. In general, the parents were satisfied with the emotional care they themselves received and the medical care that their child received. The GPs were very satisfied with the cooperation with the palliative team. Gaps are present in the areas of symptom control, communication between hospital professionals and parents, aftercare, and transition between hospital and GP.

The Dutch AYA Outpatient Clinic: Support and Counselling During and After Cancer Treatment

This chapter describes how a start was made with improving age-specific care for Adolescents and Young Adults (AYAs) in the Netherlands. AYA care is delivered to patients diagnosed with cancer between the ages of 18 and 35 years. In developing sustainable improvement in the quality and quantity of life for young adults with cancer, patient participation of young adults was sought from the very beginning. One of the major achievements in the development of AYA care is the establishment of nurse-led AYA Outpatient Clinics. An important part in describing the design and organization of an AYA Outpatient Clinic is the role played by the various clinical nurse specialists involved in AYA care. A case study is used to contextualize AYA care in daily practice.

1410PADOLESCENT AND YOUNG ADULT CANCER PATIENT (AYAS) PARTICIPATION AS DRIVER OF A NEW “AYA PROOF” CANCER CARE CONCEPT

ABSTRACT Aim: Every year 2200 new patients are diagnosed with cancer at AYA age (18-35 years) in the Netherlands. Until 2008 no specific health care organization existed for AYAs in the Netherlands, whereas they expressed their wish to get more attention for their age-specific needs. This led to an initiative in the Radboud university medical center, called the AYA Expertise Platform in which complementary input and initiatives of both patients and caregivers is crucial. Methods: At start in 2008, we asked input from the Dutch Patient Foundation ‘Young and Cancer’, and later also from individual patients in building a digital AYA community in 2010. In 2012 a so-called AYA taskforce was installed in which AYAs and professional caregivers from adult medical disciplines meet each other 4 times a year and work in small dream teams toward solutions of topics which are prioritized by the patients. Results: Based on the first sessions we made a clinical hang-out spot for AYAs and appointed a specialized AYA nurse who started an outpatient clinic dedicated to age specific care. Patients visit this clinic with questions about education, work, coping with cancer, relations, fertility, financial issues etc. They are subsequently discussed within a multidisciplinary group consisting of this nurse, medical oncologist, social worker and psychologist. The tumor related follow-up is continued by their own oncologists. In 2010 an AYA driven digital community ‘AYA4’ was built in which patients are linked together in a protected way. AYAs express their feelings, help each other and organize activities where they can meet each other. Currently 105 AYAs are member of the community. Finally, the AYA taskforce generated a list of topics which were prioritized by the patients: food, fertility, spirituality and end of life issues. Conclusions: In our hospital AYAs, together with health care professionals, are gradually building their own AYA Expertise Platform to be used during and after treatment. Patients are in the lead in co-creating their own care together with their health care professionals of the hospital wide AYA team, which process is efficient and appealing to all. Currently, the concept is being extended to a national AYA platform. Disclosure: All authors have declared no conflicts of interest.