The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study

Overview

Journal Cancers (Basel)

Publisher MDPI

Specialty Oncology

Date 2020 Aug 1

PMID 32731426

Citations 5

Authors

Vicky L M N Soomers

Ingrid M E Desar

Lonneke V van de Poll-Franse

Michiel A J van de Sande

Jacco J de Haan

Cornelis Verhoef

Ingeborg J H Vriens

Winan J van Houdt

Johannes J Bonenkamp

Winette T A van der Graaf

Olga Husson

Affiliations

Soon will be listed here.

Abstract

Background: Sarcoma patients often experience a long time to diagnosis, known as the total interval. This interval can be divided into the patient (time from symptoms to doctor consultation) and diagnostic intervals (time from first consultation to diagnosis). In other cancers, a long total interval has been associated with worse outcomes, but its effect on health-related quality of life (HRQoL) has never been investigated among sarcoma patients. This study investigates the association between (1) the actual time to diagnosis and HRQoL; (2) the perceived impact of the diagnostic interval length and HRQoL; (3) the actual length and perceived impact of the length and the HRQoL of sarcoma survivors.

Methods: A cross-sectional study was performed among sarcoma patients aged ≥18, diagnosed 2-10 years ago in the Netherlands. The participants completed a questionnaire on HRQoL, the time to diagnosis, the perceived impact of the diagnostic interval on HRQoL, and coping.

Results: 1099 participants were included (response rate, 58%). The mean time since diagnosis was 67.4 months. More than half reported a patient (60%) or diagnostic interval (55%) ≥1 month. A third (31%) perceived a negative impact of the diagnostic interval length on HRQoL. Patient or diagnostic interval length was not associated with HRQoL. By contrast, participants perceiving a negative impact (32%) had lower HRQoL scores than those perceiving a positive (11%) or no impact (58%) ( = 0.000). This association remained significant in a multivariable model, in which maladaptive coping strategies and tumour characteristics were also found to be associated with HRQoL. Participants perceiving a negative impact of the length of the diagnostic interval related this to high psychological distress levels, more physical disabilities, and worse prognosis.

Conclusion: The perceived impact of the diagnostic interval length was associated with the HRQoL of sarcoma survivors, whereas the actual length was not associated with HRQoL. Maladaptive coping strategies were independently associated with HRQoL. This offers opportunities for early intervention to improve HRQoL.

Citing Articles

Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways.

Martin S, Clark S, Gerrand C, Gilchrist K, Lawal M, Maio L Cancers (Basel). 2023; 15(15).

PMID: 37568761 PMC: 10417695. DOI: 10.3390/cancers15153946.

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

van de Poll-Franse L, Horevoorts N, Schoormans D, Beijer S, Ezendam N, Husson O J Natl Cancer Inst. 2022; 114(6):800-807.

PMID: 35201353 PMC: 9194631. DOI: 10.1093/jnci/djac047.

The Prolonged Diagnostic Pathway of Young Adults (Aged 25-39) with Cancer in the United Kingdom: Results from the Young Adult Cancer Patient Journey Study.

Soomers V, Lidington E, Sirohi B, Gonzalez M, Darlington A, van der Graaf W J Clin Med. 2021; 10(20).

PMID: 34682769 PMC: 8540185. DOI: 10.3390/jcm10204646.

Bone and Soft Tissue Tumors: New Treatment Approaches.

Miwa S, Yamamoto N, Tsuchiya H Cancers (Basel). 2021; 13(8).

PMID: 33921299 PMC: 8069035. DOI: 10.3390/cancers13081832.

Drabbe C, van der Graaf W, de Rooij B, Grunhagen D, Soomers V, van de Sande M ESMO Open. 2021; 6(1):100047.

PMID: 33516150 PMC: 7844567. DOI: 10.1016/j.esmoop.2021.100047.

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