TY - JOUR
T1 - The prevalence and intensity of late effects in patients with testicular germ cell tumors
T2 - A first step of instrument development using a stepwise approach
AU - Enzlin, Roos
AU - Vervoort, Sigrid C.J.M.
AU - Suelmann, Britt B.M.
AU - Meijer, Richard P.
AU - Teunissen, Saskia C.C.M.
AU - Zweers, Danielle
N1 - Publisher Copyright:
© 2023 The Authors
PY - 2023/6
Y1 - 2023/6
N2 - Purpose: Patients with Testicular Germ Cell Tumors (TGCT) may suffer from several late effects due to their diagnosis or treatment. Follow-up care aims to identify the recurrence of cancer and support patients with TGCT in their experienced late effects. In the Netherlands, the validated Dutch version of the Edmonton Symptom Assessment System, Utrecht Symptom Diary (USD) is used to assess and monitor patient reported symptoms. As a first step to develop a specific USD module for TGCT-patients, it was necessary to identify the prevalence and intensity of late effects in patients with TGCT, covering the physical, social, psychical and existential domains of care. Methods: A cross-sectional study was conducted. First, literature was systematically assessed to create a comprehensive list of symptoms. This generated list was reviewed by expert healthcare professionals and the research group. Lastly, a survey was distributed amongst patients with TGCT in follow-up care in the University Medical Center Utrecht (UMCU) outpatient clinic. Results: In total, 65 TGCT-patients completed the survey. All described late effects were recognized by TGCT-patients, with ‘fatigue’, ‘disturbed overall well-being’, ‘concentration problems’ and ‘neuropathy’, indicated as most prevalent and scored with highest intensity. When prioritizing these late effects, patients assigned ‘neuropathy’ as most important. Conclusions: This study provided insight into prevalence and intensity of late effects, as indicated by TGCT-patients. In clinical practice, follow-up care can improve by empowering patients to discuss important items in daily life with their health-care professionals.
AB - Purpose: Patients with Testicular Germ Cell Tumors (TGCT) may suffer from several late effects due to their diagnosis or treatment. Follow-up care aims to identify the recurrence of cancer and support patients with TGCT in their experienced late effects. In the Netherlands, the validated Dutch version of the Edmonton Symptom Assessment System, Utrecht Symptom Diary (USD) is used to assess and monitor patient reported symptoms. As a first step to develop a specific USD module for TGCT-patients, it was necessary to identify the prevalence and intensity of late effects in patients with TGCT, covering the physical, social, psychical and existential domains of care. Methods: A cross-sectional study was conducted. First, literature was systematically assessed to create a comprehensive list of symptoms. This generated list was reviewed by expert healthcare professionals and the research group. Lastly, a survey was distributed amongst patients with TGCT in follow-up care in the University Medical Center Utrecht (UMCU) outpatient clinic. Results: In total, 65 TGCT-patients completed the survey. All described late effects were recognized by TGCT-patients, with ‘fatigue’, ‘disturbed overall well-being’, ‘concentration problems’ and ‘neuropathy’, indicated as most prevalent and scored with highest intensity. When prioritizing these late effects, patients assigned ‘neuropathy’ as most important. Conclusions: This study provided insight into prevalence and intensity of late effects, as indicated by TGCT-patients. In clinical practice, follow-up care can improve by empowering patients to discuss important items in daily life with their health-care professionals.
KW - Follow-up care
KW - Late effects
KW - Symptom assessment (MeSH)
KW - Testicular germ cell tumor (MeSH)
KW - Utrecht symptom diary
UR - http://www.scopus.com/inward/record.url?scp=85150379225&partnerID=8YFLogxK
U2 - 10.1016/j.ejon.2023.102303
DO - 10.1016/j.ejon.2023.102303
M3 - Article
AN - SCOPUS:85150379225
SN - 1462-3889
VL - 64
SP - 1
EP - 8
JO - European Journal of Oncology Nursing
JF - European Journal of Oncology Nursing
M1 - 102303
ER -