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
:1. Introduction
2. Methods
2.1. Study Design and Participants
2.2. Recruitment and Data Collection
2.3. Study Measures
2.4. Time to Diagnosis
2.5. Health-Related Quality of Life: EORTC QLQ-C30
2.6. Perceived Impact of Diagnostic Interval Length on HRQoL
2.7. Socio-Demographic and Tumour Characteristics
2.8. Coping
2.9. Statistical Analyses
3. Results
3.1. Participants
3.2. Health-Related Quality of Life by Patient and Diagnostic Interval Length
3.3. Influence of Perceived Impact of Diagnostic Interval on HRQoL
3.4. Independent Association of Patient Interval and Patient and Tumour Characteristics with HRQoL
3.5. Independent Association of Diagnostic Interval and Patient and Tumour Characteristics with HRQoL
3.6. Consideration of Patients Who Perceive a Negative Impact of Their Diagnostic Interval Length on HRQoL; Qualitative Analyses
- “Fear, you don’t know when and where it recurs. You continuously monitor your body.”
- “Heavy psychological stress during the diagnostic trajectory.”
- “A lot of pain longer than necessary. Surgical intervention was not possible anymore due to the long diagnostic trajectory.”
- “Then they would not have to cut it out this far, so I would have fewer complaints now.”
- “Yes, because if there had been an earlier intervention, then the sarcoma would not have been this large and I would not have had metastases.”
- “Due to not tackling it immediately it came back twice.”
4. Discussion
5. Conclusions
Author Contributions
Funding
Conflicts of Interest
References
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All Patients (n = 1099) | |
---|---|
Gender n (%) | |
Male | 595 (54) |
Female | 504 (46) |
Age at diagnosis in years: Mean (SD) | 54.6 (15.4) |
Socio-economic status n (%) | |
Low | 286 (26.1) |
Intermediate | 462 (42.1) |
High | 349 (31.8) |
Coping: mean (SD) | |
Helplessness | 8.8 (3.6) |
Acceptance | 18.8 (4.2) |
Disease benefits | 15.8 (4.8) |
Time since diagnosis in months: Mean (SD) | 67.4 (30.4) |
Location n (%) | |
Extremities | 514 (47) |
Non-extremities | 585 (53) |
Histology n (%) | |
Soft tissue sarcoma | 835 (76) |
Dermatofibrosarcoma protuberans | 74 (7) |
Liposarcoma | 177 (16) |
Myxofibrosarcoma | 137 (13) |
Leiomyosarcoma | 113 (10) |
Rhabdomyosarcoma | 15 (1) |
Malignant peripheral nerve sheath tumors (MPNST) | 34 (3) |
Synovial sarcoma | 35 (3) |
Vascular sarcoma | 43 (4) |
Other soft tissue sarcoma | 201 (18) |
Bone sarcoma | 264 (24) |
Osteosarcoma | 69 (6) |
Chondrosarcoma | 130 (12) |
Chordoma | 30 (3) |
Ewing sarcoma | 28 (3) |
Other bone sarcoma | 13 (1) |
Grade n (%) | |
Low grade | 614 (60) |
Intermediate or high grade | 407 (40) |
Metastases at diagnosis n (%) | |
Not present | 1067 (97) |
Present | 32 (3) |
Treatment modalities n (%) | |
Surgery | 448 (43) |
Surgery and radiotherapy | 422 (41) |
Surgery and chemotherapy | 79 (8) |
Surgery and radiotherapy and chemotherapy | 86 (8) |
Global QoL | Physical Functioning | Role Functioning | Emotional Functioning | Cognitive Functioning | Social Functioning | |
---|---|---|---|---|---|---|
Patient interval | ||||||
<1 month | ref | ref | ref | ref | ref | ref |
≥1 month | 0.031 | 0.017 | 0.047 | –0.032 | –0.006 | –0.008 |
Perceived impact of diagnostic interval length | ||||||
–negative | ref | ref | ref | ref | ref | ref |
–positive | 0.088 ** | 0.040 | 0.044 | 0.026 | 0.051 | 0.027 |
–no impact | 0.065 * | 0.032 | 0.034 | 0.092 ** | 0.044 | 0.086 ** |
Gender | ||||||
–male | ref | ref | ref | ref | ref | ref |
–female | –0.038 | –0.064 * | 0.009 | –0.039 | –0.042 | –0.010 |
Age at diagnosis | –0.018 | –0.231 ** | –0.086 ** | 0.174 ** | 0.103 ** | 0.071 * |
Socio–economic status | ||||||
–low | ref | ref | ref | ref | ref | ref |
–intermediate | 0.029 | 0.060* | 0.007 | 0.014 | –0.019 | 0.018 |
–high | 0.034 | 0.062* | 0.029 | 0.020 | 0.044 | 0.038 |
Coping | ||||||
–helplessness | –0.441 ** | –0.601 ** | –0.601 ** | –0.386 ** | –0.323 ** | –0.518 ** |
–acceptance | 0.157 ** | –0.005 | 0.063 * | 0.239 ** | 0.113 ** | 0.122 ** |
–disease benefits | 0.118 ** | 0.017 | 0.030 | 0.010 | 0.013 | 0.011 |
Time since diagnosis | –0.036 | –0.064 ** | –0.035 | 0.042 | 0.005 | –0.006 |
Location | ||||||
–non–extremity | ref | ref | (0.0 ref) | ref | ref | ref |
–extremity | 0.081 ** | –0.060 * | 0.037 | 0.049 | 0.106 ** | 0.045 |
Histology # | ||||||
–dermatofibrosarcoma | ref | ref | ref | ref | ref | ref |
–liposarcoma | –0.103 * | 0.041 | 0.063 | 0.12 | 0.061 | 0.000 |
–myxofibrosarcoma | –0.135 ** | 0.013 | 0.013 | –0.025 | –0.020 | –0.035 |
–leiomyosarcoma | –0.058 | 0.036 | 0.087 * | –0.026 | –0.018 | 0.040 |
–rhabdomyosarcoma | 0.011 | 0.011 | 0.042 | 0.018 | 0.031 | 0.044 |
–malignant peripheral nerve sheath tumors (MPNST) | 0.000 | –0.065 * | –0.005 | 0.010 | 0.002 | 0015 |
–synovial | –0.037 | 0.015 | –0.014 | 0.013 | 0.019 | 0.002 |
sarcoma | ||||||
–vascular | –0.014 | –0.019 | –0.001 | –0.020 | 0.023 | –0.006 |
sarcoma | ||||||
–other STS | –0.132 * | 0.041 | 0.049 | 0.078 | 0.028 | 0.034 |
–osteosarcoma | –0.053 | –0.098 ** | –0.049 | 0.067 | 0.026 | 0.026 |
–chondrosarcoma | –0.075 | –0.048 | –0.041 | 0.061 | 0.010 | 0.011 |
–chordoma | –0.125 ** | –0.102 ** | –0.042 | –0.008 | 0.003 | –0.046 |
–Ewing sarcoma | –0.012 | –0.033 | 0.010 | 0.080 * | –0.002 | 0.028 |
–other BS | –0.042 | –0.024 | 0.003 | 0.007 | 0.026 | 0.014 |
Grade | ||||||
–low | ref | ref | ref | ref | ref | |
–high | –0.059 | –0.055 | –0.044 | –0.011 | –0.014 | |
Metastases at diagnosis | ||||||
–not present | ref | ref | ref | ref | ref | ref |
–present | –0.037 | 0.027 | –0.016 | –0.054 | –0.038 | |
Treatment modality | ||||||
–surgery plus | ref | ref | ref | ref | ref | ref |
CHx, RTx, or both | ||||||
–surgery alone | –0.009 | –0.002 | 0.000 | 0.079 * | 0.028 |
Global QoL | Physical Functioning | Role Functioning | Emotional Functioning | Cognitive Functioning | Social Functioning | |
---|---|---|---|---|---|---|
Diagnostic interval | ||||||
<1 month | ref | ref | ref | ref | ref | ref |
≥1 month | 0.012 | 0.016 | –0.015 | 0.019 | 0.012 | –0.027 |
Perceived impact of diagnostic interval length | ||||||
–negative | ref | ref | ref | ref | ref | ref |
–positive | 0.087 ** | 0.042 | 0.035 | 0.034 | 0.055 | 0.021 |
–no impact | 0.066 * | 0.035 | 0.027 | 0.099 ** | 0.048 | 0.079 * |
Gender | ||||||
–male | ref | ref | ref | ref | ref | ref |
–female | –0.037 | –0.064 ** | 0.011 | –0.041 | –0.043 | –0.009 |
Age at diagnosis | –0.018 | –0.230 ** | –0.089 ** | 0.177 ** | 0.104 ** | 0.069 * |
Socio–economic status | ||||||
–low | ref | ref | ref | ref | ref | ref |
–intermediate | 0.029 | 0.060 * | 0.007 | 0.015 | –0.019 | 0.018 |
–high | 0.035 | 0.062 * | 0.03 | 0.019 | 0.044 | 0.038 |
Coping | ||||||
–helplessness | –0.441 ** | –0.600 ** | –0.604 ** | –0.384 ** | –0.322 ** | –0.520 ** |
–acceptance | 0.157 ** | –0.005 | 0.064 * | 0.238 ** | 0.113 ** | 0.122 ** |
–disease benefits | 0.117 ** | 0.017 | 0.027 | 0.012 | 0.014 | 0.01 |
Time since diagnosis | –0.036 | –0.066 ** | –0.035 | 0.042 | 0.005 | –0.007 |
Location | ||||||
–non–extremity | ref | ref | ref | ref | ref | ref |
–extremity | 0.083 ** | –0.059 * | 0.04 | 0.046 | 0.105 ** | 0.045 |
Histology # | ||||||
–dermatofibrosarcoma | ref | ref | ref | ref | ref | ref |
–liposarcoma | –0.110 * | 0.037 | 0.054 | 0.017 | 0.061 | 0.003 |
–myxofibrosarcoma | –0.141 ** | 0.009 | 0.005 | –0.02 | –0.02 | –0.032 |
–leiomyosarcoma | –0.062 | 0.033 | 0.083 * | –0.024 | –0.018 | 0.043 |
–rhabdomyosarcoma | 0.008 | 0.009 | 0.038 | 0.021 | 0.031 | 0.045 |
–malignant peripheral nerve sheath tumors (MPNST) | –0.003 | –0.067* | –0.007 | 0.01 | 0.002 | 0.017 |
–synovial | –0.039 | 0.013 | –0.012 | 0.011 | 0.017 | 0.005 |
sarcoma | ||||||
–vascular | –0.018 | –0.022 | –0.006 | –0.017 | 0.023 | –0.004 |
sarcoma | ||||||
–other STS | –0.139 ** | 0.037 | 0.04 | 0.084 | 0.029 | 0.038 |
–osteosarcoma | –0.055 | –0.100 ** | –0.051 | 0.068 | 0.026 | 0.028 |
–chondrosarcoma | –0.079 | –0.051 | –0.042 | 0.061 | 0.009 | 0.015 |
–chordoma | –0.127 ** | –0.103 ** | –0.042 | –0.008 | 0.003 | –0.044 |
–Ewing sarcoma | –0.013 | –0.034 | 0.008 | 0.081 * | –0.001 | 0.029 |
–other BS | –0.044 | –0.025 | –0.001 | 0.009 | 0.026 | 0.014 |
Grade | ||||||
–low | ref | ref | ref | ref | ref | ref |
–high | –0.058 | –0.054 | –0.011 | –0.044 | –0.01 | –0.015 |
Metastases at diagnosis | ||||||
–not present | ref | ref | ref | ref | ref | ref |
–present | –0.037 | 0.027 | 0.005 | –0.017 | –0.054 | –0.037 |
Treatment modality | ||||||
–surgery plus | ref | ref | ref | ref | ref | ref |
CHx, RTx, or both | ||||||
–surgery alone | –0.006 | –0.001 | 0.037 | –0.003 | 0.078* | 0.028 |
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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.; et al. 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 2020, 12, 2088. https://doi.org/10.3390/cancers12082088
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, et al. 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. 2020; 12(8):2088. https://doi.org/10.3390/cancers12082088
Chicago/Turabian StyleSoomers, Vicky L. M. N., 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, and et al. 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, no. 8: 2088. https://doi.org/10.3390/cancers12082088