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. 2021 Feb 8;13(4):679.
doi: 10.3390/cancers13040679.

Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System-Results from the SURVSARC Study

Cas Drabbe  1   2 , Dirk J Grünhagen  3 , Winan J Van Houdt  4 , Pètra M Braam  5 , Vicky L M N Soomers  6 , Jos A Van der Hage  7 , Jacco J De Haan  8 , Kristien B M I Keymeulen  9 , Olga Husson  1   10 , Winette T A Van der Graaf  1   11
Affiliations

Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System-Results from the SURVSARC Study

Cas Drabbe et al. Cancers (Basel). .

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.

Keywords: adolescent and young adult; age-related; elderly; experience with healthcare; information needs; rare cancer; sarcoma; satisfaction with care; survivorship.

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Conflict of interest statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

Figures

Figure 1
Figure 1
Overview of the design and measures from the SURVSARC study used in this manuscript. HRQoL: Health-related quality of life. QLQ-INFO25: European Organization for Research and Treatment of Cancer Quality of Life Group information questionnaire.
See this image and copyright information in PMC

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