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

V.L.M.N. Soomers; I.M.E. Desar; L.V. van de Poll-franse; M.A.J. van de Sande; J.J. de Haan; C. Verhoef; I.J.H. Vriens; W.J. van Houdt; J.J. Bonenkamp; W.T.A. van der Graaf; O. Husson

doi:10.3390/cancers12082088

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

V.L.M.N. Soomers, I.M.E. Desar, L.V. van de Poll-franse, M.A.J. van de Sande, J.J. de Haan, C. Verhoef, I.J.H. Vriens, W.J. van Houdt, J.J. Bonenkamp, W.T.A. van der Graaf, O. Husson^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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%) (p= 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.

Original language	English
Article number	2088
Number of pages	13
Journal	Cancers
Volume	12
Issue number	8
DOIs	https://doi.org/10.3390/cancers12082088
Publication status	Published - 1 Aug 2020

Keywords

cancer
delay
design
diagnostic interval
experience
health-related quality of life
outcomes
qlq-c30
questionnaire
sarcoma
time to diagnosis
DESIGN
CANCER
EXPERIENCE
QLQ-C30
OUTCOMES
QUESTIONNAIRE
DELAY

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Soomers, V. L. M. N., Desar, I. M. E., van de Poll-franse, L. V., van de Sande, M. A. J., de Haan, J. J., Verhoef, C., Vriens, I. J. H., van Houdt, W. J., Bonenkamp, J. J., van der Graaf, W. T. A., & Husson, O. (2020). 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. Cancers, 12(8), Article 2088. https://doi.org/10.3390/cancers12082088

@article{a4270218019f4280bc7b73f5b3270c25,

title = "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",

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%) (p= 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.",

keywords = "cancer, delay, design, diagnostic interval, experience, health-related quality of life, outcomes, qlq-c30, questionnaire, sarcoma, time to diagnosis, DESIGN, CANCER, EXPERIENCE, QLQ-C30, OUTCOMES, QUESTIONNAIRE, DELAY",

author = "V.L.M.N. Soomers and I.M.E. Desar and {van de Poll-franse}, L.V. and {van de Sande}, M.A.J. and {de Haan}, J.J. and C. Verhoef and I.J.H. Vriens and {van Houdt}, W.J. and J.J. Bonenkamp and {van der Graaf}, W.T.A. and O. Husson",

note = "Funding Information: Funding: The PROFILES registry was funded by an Investment Grant Medium (#480-08-009) of the Netherlands Organization for Scientific Research (The Hague, the Netherlands). The present research was supported by an Investment Grant Large (2016/04981/ZONMW-91101002) of the Netherlands Organization for Scientific Research (The Hague, the Netherlands). Vicky Soomers is supported by a junior research grant from the Radboud Institute of Health Sciences. 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). Publisher Copyright: {\textcopyright} 2020 by the authors. Licensee MDPI, Basel, Switzerland.",

year = "2020",

month = aug,

day = "1",

doi = "10.3390/cancers12082088",

language = "English",

volume = "12",

journal = "Cancers",

issn = "2072-6694",

publisher = "Multidisciplinary Digital Publishing Institute (MDPI)",

number = "8",

}

Soomers, VLMN, Desar, IME, van de Poll-franse, LV, van de Sande, MAJ, de Haan, JJ, Verhoef, C, Vriens, IJH, van Houdt, WJ, Bonenkamp, JJ, van der Graaf, WTA & Husson, O 2020, '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', Cancers, vol. 12, no. 8, 2088. https://doi.org/10.3390/cancers12082088

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. / Soomers, V.L.M.N.; Desar, I.M.E.; van de Poll-franse, L.V. et al.
In: Cancers, Vol. 12, No. 8, 2088, 01.08.2020.

Research output: Contribution to journal › Article › Academic › peer-review

TY - JOUR

T1 - The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors

T2 - Results from the Dutch Nationwide SURVSARC Study

AU - Soomers, V.L.M.N.

AU - Desar, I.M.E.

AU - van de Poll-franse, L.V.

AU - van de Sande, M.A.J.

AU - de Haan, J.J.

AU - Verhoef, C.

AU - Vriens, I.J.H.

AU - van Houdt, W.J.

AU - Bonenkamp, J.J.

AU - van der Graaf, W.T.A.

AU - Husson, O.

N1 - Funding Information: Funding: The PROFILES registry was funded by an Investment Grant Medium (#480-08-009) of the Netherlands Organization for Scientific Research (The Hague, the Netherlands). The present research was supported by an Investment Grant Large (2016/04981/ZONMW-91101002) of the Netherlands Organization for Scientific Research (The Hague, the Netherlands). Vicky Soomers is supported by a junior research grant from the Radboud Institute of Health Sciences. 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). Publisher Copyright: © 2020 by the authors. Licensee MDPI, Basel, Switzerland.

PY - 2020/8/1

Y1 - 2020/8/1

N2 - 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%) (p= 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.

AB - 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%) (p= 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.

KW - cancer

KW - delay

KW - design

KW - diagnostic interval

KW - experience

KW - health-related quality of life

KW - outcomes

KW - qlq-c30

KW - questionnaire

KW - sarcoma

KW - time to diagnosis

KW - DESIGN

KW - CANCER

KW - EXPERIENCE

KW - QLQ-C30

KW - OUTCOMES

KW - QUESTIONNAIRE

KW - DELAY

U2 - 10.3390/cancers12082088

DO - 10.3390/cancers12082088

M3 - Article

C2 - 32731426

SN - 2072-6694

VL - 12

JO - Cancers

JF - Cancers

IS - 8

M1 - 2088

ER -