TY - JOUR
T1 - Learning from long-term adolescent and young adult (AYA) cancer survivors regarding their age-specific care needs to improve current AYA care programs
AU - Janssen, Silvie H. M.
AU - Vlooswijk, Carla
AU - Manten-Horst, Eveliene
AU - Sleeman, Sophia H. E.
AU - Bijlsma, Rhode M.
AU - Kaal, Suzanne E. J.
AU - Kerst, Jan Martijn
AU - Tromp, Jacqueline M.
AU - Bos, Monique E. M. M.
AU - van Der Hulle, Tom
AU - Lalisang, Roy I.
AU - Nuver, Janine
AU - Kouwenhoven, Mathilde C. M.
AU - van Der Graaf, Winette T. A.
AU - Husson, Olga
PY - 2023/6
Y1 - 2023/6
N2 - Background: Despite growing (inter)national awareness and appreciation, age-specific care is still not always self-evident and accepted as standard of care for adolescent and young adult (AYA) cancer patients. It is unknown whether long-term AYA cancer survivors have missed age-specific care, and if so, which survivors missed it and regarding which topics.Methods: The Netherlands Cancer Registry (NCR) identified all long-term AYA cancer survivors (aged 18-39 years at initial cancer diagnosis, 5-20 years past diagnosis) in the Netherlands, who were invited to participate in a population-based, observational, cross-sectional questionnaire study (SURVAYA study), including questions on care needs.Results: In total, 3.989 AYAs participated (35.3% response rate). One-third of them had a need for age-specific care (33.5%), 41.2% had no need and 25.3% did not know whether they had a need. Those who had a need for age-specific care were significantly more often female, higher educated, diagnosed at a younger age, and treated with chemotherapy, radiotherapy or hormone therapy. Most frequent topics were disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), work and reintegration (10.5%), care not tailored (13.8%), and overarching care and life (27.7%). Palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%) were mentioned least.Conclusions: A substantial proportion of long-term AYA cancer survivors showed a need for age-specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.
AB - Background: Despite growing (inter)national awareness and appreciation, age-specific care is still not always self-evident and accepted as standard of care for adolescent and young adult (AYA) cancer patients. It is unknown whether long-term AYA cancer survivors have missed age-specific care, and if so, which survivors missed it and regarding which topics.Methods: The Netherlands Cancer Registry (NCR) identified all long-term AYA cancer survivors (aged 18-39 years at initial cancer diagnosis, 5-20 years past diagnosis) in the Netherlands, who were invited to participate in a population-based, observational, cross-sectional questionnaire study (SURVAYA study), including questions on care needs.Results: In total, 3.989 AYAs participated (35.3% response rate). One-third of them had a need for age-specific care (33.5%), 41.2% had no need and 25.3% did not know whether they had a need. Those who had a need for age-specific care were significantly more often female, higher educated, diagnosed at a younger age, and treated with chemotherapy, radiotherapy or hormone therapy. Most frequent topics were disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), work and reintegration (10.5%), care not tailored (13.8%), and overarching care and life (27.7%). Palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%) were mentioned least.Conclusions: A substantial proportion of long-term AYA cancer survivors showed a need for age-specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.
KW - adolescents and young adults
KW - age-specific care needs
KW - AYAs
KW - cancer
KW - population-based data
KW - survivorship
KW - PSYCHOSOCIAL OUTCOMES
KW - EXPERIENCES
KW - ONCOLOGY
U2 - 10.1002/cam4.6001
DO - 10.1002/cam4.6001
M3 - Article
C2 - 37119039
SN - 2045-7634
VL - 12
SP - 13712
EP - 13731
JO - Cancer Medicine
JF - Cancer Medicine
IS - 12
ER -