Great efforts and impressive progresses are being made in tumor treatment. Research and care concerning long-term problems and late effects of cancer in disease survivors is, however, still insufficient.
The FiX study enrolled 2,508 patients across 15 different cancer entities around 2 years after diagnosis via an Epidemiological Cancer Registry in Germany, with the primary aim to assess pattern, severity, and impact of fatigue. A follow-up survey was conducted between 12/2020 and 04/2021. Using a list with 36 potential long-term problems or late effects, participants were asked how much these are/were a burden to them (no/ little / moderate / significant / extreme burden), and, in case of burden, how they rate the received support for this problem (good / moderate / poor).
1,874 participants (76%) completed the follow-up survey at a median (Q1, Q3) of 4.2 (3.8, 4.8) years after cancer diagnosis. This population had a mean (SD) age of 65.8 (11.2) years, and 49% were female.
The most frequently reported problems rated with at least moderate burden were: loss of physical capacity (40.7%), fatigue (38.5%), sleep problems (36.6%), sexual problems (35.4%), arthralgia (33.4%), anxiety (33.2%), and neuropathy (28.9%). Cardiac disorders and osteoporosis burdened 15.6% and 11.9% of survivors, respectively. Extreme burden was most frequently rated for sexual problems (10.1%), mainly in men with prostate cancer. This was also the problem with the highest proportion of dissatisfaction with received support (44.7% of affected survivors rated support as poor). Support for fatigue was rated as poor by 37.7% and as good only by 29.5% of affected survivors. Support was also reported as poor for neuropathy (35.9%), cognitive problems (35.3%), weight gain (34.7%), or hot flashes/night sweats (33.7%). In contrast, support in case of pain was rated as good by a majority (51.3%). Determinants of the different burdens and of satisfaction with support have been identified.
A significant number of cancer survivor suffer from long-term effects. Our study identified several groups with open needs for improvements in supportive care.
Clinical trial identification
Legal entity responsible for the study
Has not received any funding.
All authors have declared no conflicts of interest.