Abstract
The aim of this study was to explore the experience of rare cancer patients with the healthcare system and examine differences between age groups (adolescents and young adults (AYA, 18-39 years), older adults (OA, 40-69 years) and elderly (≥70 years)). Dutch sarcoma patients, 2-10 years after diagnosis, completed a questionnaire on their experience with the healthcare system, satisfaction with care, information needs, patient and diagnostic intervals (first symptom to first doctor's visit and first doctor's visit to diagnosis, respectively) and received supportive care. In total, 1099 patients completed the questionnaire (response rate 58%): 186 AYAs, 748 OAs and 165 elderly. Many survivors experienced insufficient medical and non-medical guidance (32% and 38%), although satisfaction with care was rated good to excellent by 94%. Both patient and diagnostic intervals were >1 month for over half of the participants and information needs were largely met (97%). AYAs had the longest patient and diagnostic intervals, experienced the greatest lack of (non-)medical guidance, had more desire for patient support groups and used supportive care most often. This nationwide study among sarcoma survivors showed that healthcare experiences differ per age group and identified needs related to the rarity of these tumors, such as improvements concerning (non-)medical guidance and diagnostic intervals.
Original language | English |
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Article number | 679 |
Pages (from-to) | 1-16 |
Number of pages | 16 |
Journal | Cancers |
Volume | 13 |
Issue number | 4 |
DOIs | |
Publication status | Published - 8 Feb 2021 |
Bibliographical note
Funding:The PROFILES registry was funded by the Investment Grant Medium (#480-08-009) from
the Netherlands Organization for Scientific Research (The Hague, The Netherlands). The present
research was supported by the Investment Grant Large (2016/04981/ZONMW-91101002) from the
Netherlands Organization for Scientific Research (The Hague, The Netherlands). Olga Husson is
supported by a Social Psychology Fellowship from the Dutch Cancer Society (#KUN2015-7527) and
Netherlands Organization for Scientific Research VIDI grant (198.007).
Research programs
- EMC OR-01