Sarcoma is one of the rarer cancer types and patients are often prone to delay before diagnosis [
Fast track referral pathways have been implemented in some countries to reduce delays [
Description of the alarm symptoms qualifying the patient for referral to the Danish Sarcoma Cancer Patient Pathway (CPP) is as follows: Soft tissue tumor over five cm. Soft tissue tumor situated on or below the deep muscle fascia. Rapidly growing soft tissue tumor. Palpable bone tumor. Deep, persisting bone pains without other obvious explanation.
Patients without alarm symptoms may thus experience delays.
Studies have investigated presenting symptoms among confirmed sarcoma patients at time of diagnosis in highly specialized sarcoma centers, and the symptom duration is usually reported as a total sum from first symptom to diagnosis. However, this approach sheds no light on the initial symptoms and does not include the population of benign tumors from which sarcomas have to be separated. Thus, we need detailed information on the milestones and how the presenting symptoms affect the length of time intervals to be able to optimize the diagnostic pathway for sarcoma patients.
We aimed to examine time intervals, symptom presentation, and routes to diagnosis from first perceived symptom to diagnosis at a specialist center among patients referred to the CPP for sarcomas. We hypothesized that the time to diagnosis for suspected sarcoma patients differs depending on the presenting signs and symptoms.
The study was performed at Aarhus Sarcoma Center (ASC), one of the two centralized sarcoma centers in Denmark, with a catchment area of approximately 2.5 million inhabitants. ASC functions mainly as the highly specialized sarcoma department, to which all patients found to have a suspicion of sarcoma at local hospitals are referred. Further, ASC also serves as the local orthopedic hospital department for suspected sarcoma patients living in Aarhus Municipality (approximately 330.000 inhabitants).
All consecutive patients referred to the CPP for sarcoma at ASC in the period from 1st of September 2014 to 31st of August 2015 were invited to participate. Data were collected from patient questionnaires and medical records. A patient and a GP questionnaire was developed based on similar questionnaires for other cancer types [
Patients received their questionnaire by mail before the first appointment at ASC and were encouraged to answer questions beforehand. Patients were interviewed after the appointment, to ensure correct completion of questions. An informed consent was also provided at this time. The GP questionnaire was sent to the patients’ GP if either the medical record showed or the patient stated that they had visited their GP in relation to the present pathway. GPs received no remuneration. GPs were reminded with a new questionnaire after 4-5 weeks, followed by a telephone reminder after a further three weeks. The patient’s route to diagnosis was tracked backwards and data from local hospitals were collected from medical records. Final diagnosis and treatment were collected from medical records containing pathology reports at ASC.
Tumor grade for sarcoma patients was classified by the Trojani classification system [
Tumor size was measured as the largest diameter on MRI or CT. If none of these scans were performed, size was taken from the pathology and, if not removed, from ultrasound, x-ray, or clinical measurement. For analyses on time intervals in different tumor size groups, only patients where the size had been measured on an MRI/CT or histology report were included. Tumor depth was classified as subcutaneous or subfascial relative to the deep muscle fascia.
Questions about primary symptoms and development in symptoms were answered by the patients in free text, and each reported symptom was coded with an individual number. No grouping of symptoms into categories was done during the recording. The recorded codes could then later be collected into larger groups suitable for analyses.
The GPs were asked to report their tentative/suspected diagnosis in free text. Each diagnosis was coded with individual numbers using the same approach as for presenting symptoms, and all codes corresponding to a suspicion of any malignancy were classified as GP suspicion being present.
Patients reported date of symptom debut and date of first doctor visit. GPs reported date of first visit and date of referral for further investigation at hospitals. Date of first appointment and date of referral for each local hospital department were collected from medical records. From ASC the date of received referral and date of decision of diagnosis and/or initial treatment were collected. If only a month and year were stated in questionnaires, the 15th of that month was chosen as the specific date. If only a year was stated, the 1st of July in that year was chosen as the specific date. For patients with missing GP data, the patient reported date for first doctor visit was used to calculate patient interval and diagnostic interval. Time intervals are measured in calendar days and defined in accordance with the Aarhus Statement [
Overview of time points and calculated time intervals [
The study was approved by the Danish Data Protection Agency (journal number 2007-58-0010). All patients provided written consent to participation. Approval from the Committee on Health Research Ethics of the Central Denmark Region was not needed according to Danish law.
Descriptive statistics were used to test differences between participants and nonparticipants (chi-squared test (gender) and Wilcoxon Rank Sum Test (age)). Number of hospital departments visited and number of GP consultations were compared with the Wilcoxon Rank Sum test. Time intervals are reported as medians with interquartile intervals (IQI). Comparisons of time intervals at the 50th and 75th percentile between different groups were performed with quantile regression analyses, using the procedure written by Miranda [
During the inclusion period a total of 607 patients entered the sarcoma CPP at ASC. Of these, 545 patients were included as 56 patients did not want to participate in the study, five were not mentally able to answer questionnaires, and one did not speak Danish or English. Nonparticipants did not differ significantly from participants with regard to age or gender. 466 GP questionnaires were sent out, of which 400 were completed. For 42 patients with a nonresponding GP, information on dates and performed imaging investigations at the GPs office could be collected from the GP referral or the medical records.
Of 545 included patients, 102 were diagnosed with a sarcoma and 68 with other malignancies, giving a total proportion of malignancies of 31.2%. There were no significant differences in gender
Patient and tumor characteristics of 545 patients referred to the Cancer Patient Pathway for sarcomas.
Benign tumors | Other malignancies | Sarcomas | |
---|---|---|---|
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Median (IQI) | 52.0 (36.0–64.0) | 68.5 (55.5–75.0) | 55.0 (44.0–70.0) |
| |||
Female ( |
181 (48.3) | 31 (45.6) | 48 (47.1) |
Male ( |
194 (51.7) | 37 (54.4) | 54 (52.9) |
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Soft tissue ( |
255 (68.0) | 40 (58.8) | 88 (86.3) |
Bone ( |
120 (32.0) | 28 (41.2) | 14 (13.7) |
| |||
Median (IQI) | 3.2 (2.0–5.5) | 3.8 (2.6–6.5) | 5.75 (4.0–9.0) |
Mean (SD) | 4.4 (4.0) | 5.4 (4.1) | 7.2 (5.8) |
Size over 5 cm ( |
123 (32.8) | 26 (38.2) | 63 (61.8) |
Size under 5 cm ( |
232 (61.9) | 35 (51.5) | 33 (32.4) |
Missing | 20 (5.3) | 7 (10.3) | 6 (5.9) |
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Aarhus Municipality ( |
117 (31.2) | 11 (16.2) | 15 (14.7) |
Rest of Jutland area ( |
258 (68.8) | 57 (83.8) | 87 (85.3) |
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Subcutaneous ( |
108 (42.4) | 25 (62.5) | 34 (38.6) |
Subfascial ( |
147 (57.6) | 15 (37.5) | 54 (61.4) |
Most frequent reasons for seeking medical care for the total patient population were pain, wanting to know what it was, consulting for something else, being urged by others, and incidental findings on imaging (Table
Main reason for seeking medical care as stated by the patient.
Benign |
Other malignancies |
Sarcomas |
Total population |
|
---|---|---|---|---|
Increasing size of the tumor/swelling | 20 (5.3) | 3 (4.4) | 7 (6.9) | 30 (5.5) |
Promptly reacted to the presence of swelling/lump | 25 (6.7) | 7 (10.3) | 9 (8.8) | 41 (7.5) |
Tumor/swelling/pain did not disappear | 24 (6.4) | 3 (4.4) | 6 (5.9) | 33 (6.1) |
Pain | 77 (20.5) | 17 (25.0) | 15 (14.7) | 109 (20.0) |
Bothered to much | 6 (1.6) | 1 (1.5) | 6 (5.9) | 13 (2.4) |
Afraid that it was cancer | 22 (5.9) | 3 (4.4) | 5 (4.9) | 30 (5.5) |
Was worried/unsecure about the symptoms | 18 (4.8) | 2 (2.9) | 6 (5.9) | 26 (4.8) |
Wanted to know what it was | 34 (9.1) | 1 (1.5) | 12 (11.8) | 47 (8.6) |
Could not work/hindered at work | 5 (1.3) | 0 (0.0) | 1 (1.0) | 6 (1.1) |
Restriction of movement | 4 (1.1) | 0 (0.0) | 0 (0.0) | 4 (0.7) |
Hindered in daily activity | 13 (3.5) | 0 (0.0) | 4 (3.9) | 17 (3.1) |
Affected night sleep | 1 (0.3) | 0 (0.0) | 1 (1.0) | 2 (0.4) |
Were at the doctor’s office for something else | 45 (12.0) | 11 (16.2) | 9 (8.8) | 65 (11.9) |
Wanted it removed | 2 (0.5) | 0 (0.0) | 3 (2.9) | 5 (0.9) |
Concerned for the cosmetic appearance | 1 (0.3) | 0 (0.0) | 1 (1.0) | 2 (0.4) |
Weight loss | 1 (0.3) | 0 (0.0) | 0 (0.0) | 1 (0.2) |
Thought it was side effects to medicine | 1 (0.3) | 0 (0.0) | 0 (0.0) | 1 (0.2) |
Thought it was an insect bite | 2 (0.5) | 0 (0.0) | 0 (0.0) | 2 (0.4) |
Urged to seek doctor by others | 35 (9.3) | 6 (8.8) | 10 (9.8) | 51 (9.4) |
Wanted a referral to scanning | 1 (0.3) | 0 (0.0) | 0 (0.0) | 1 (0.2) |
Had many moles and are aware of skin changes | 0 (0.0) | 1 (1.5) | 0 (0.0) | 1 (0.2) |
Read cancer awareness brochure | 1 (0.3) | 0 (0.0) | 0 (0.0) | 1 (0.2) |
Thought it was a hernia | 0 (0.0) | 1 (1.5) | 0 (0.0) | 1 (0.2) |
Thought it was a fractured bone | 0 (0.0) | 1 (1.5) | 0 (0.0) | 1 (0.2) |
Fatigue | 1 (0.3) | 0 (0.0) | 0 (0.0) | 1 (0.2) |
Wanted antibiotics | 1 (0.3) | 0 (0.0) | 0 (0.0) | 1 (0.2) |
Previously had cancer and are aware of any lumps | 1 (0.3) | 2 (2.9) | 2 (2.0) | 5 (0.9) |
Wanted referral to physical therapy | 1 (0.3) | 0 (0.0) | 0 (0.0) | 1 (0.2) |
Incidental finding on imaging | 33 (8.8) | 9 (13.2) | 5 (4.9) | 47 (8.6) |
Patient reported initial symptoms.
Initial symptom | Sarcomas ( |
Other malignancies ( |
Benign ( |
---|---|---|---|
Noticed lump | 67 (65.7) | 27 (39.7) | 194 (51.7) |
Noticed indentation of the skin | 1 (1.0) | 0 (0.0) | 1 (0.3) |
Mobile lump | 0 (0.0) | 2 (2.9) | 2 (0.5) |
Noticed swelling | 7 (6.9) | 7 (10.3) | 34 (9.1) |
Soft lump | 1 (1.0) | 1 (1.5) | 2 (0.5) |
Lump with discharge | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Hard lump | 4 (3.9) | 0 (0.0) | 8 (2.1) |
Previously removed lump recurred | 6 (5.9) | 0 (0.0) | 3 (0.8) |
Noticed skin change/wound | 4 (3.9) | 3 (4.4) | 3 (0.8) |
Itching | 1 (1.0) | 0 (0.0) | 4 (1.1) |
Redness | 1 (1.0) | 0 (0.0) | 5 (1.3) |
Pain | 27 (26.5) | 24 (35.3) | 135 (36.0) |
Bother/pain related to pressure on lump | 6 (5.9) | 0 (0.0) | 13 (3.5) |
Night pain | 1 (1.0) | 0 (0.0) | 5 (1.3) |
Pain or stiffness in the morning | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Pain related to movement | 5 (4.9) | 4 (5.9) | 23 (6.1) |
Tenderness | 6 (5.9) | 4 (5.9) | 37 (9.9) |
Radiating pain | 4 (3.9) | 1 (1.5) | 12 (3.2) |
Sensation of tightness | 2 (2.0) | 2 (2.9) | 3 (0.8) |
Reduced strength | 2 (2.0) | 0 (0.0) | 1 (0.3) |
Sensibility disturbances | 3 (2.9) | 1 (1.5) | 8 (2.1) |
Sensation of heaviness | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Reduced ability to practice sports | 1 (1.0) | 1 (1.5) | 8 (2.1) |
Problems with walking | 4 (3.9) | 1 (1.5) | 11 (2.9) |
Reduction of movement ability | 0 (0.0) | 1 (1.5) | 11 (2.9) |
Started after a trauma | 6 (5.9) | 8 (11.8) | 34 (9.1) |
Started after exercise | 1 (1.0) | 0 (0.0) | 5 (1.3) |
Clicking sound from joint | 0 (0.0) | 0 (0.0) | 2 (0.5) |
Slipping sensation in joint | 0 (0.0) | 0 (0.0) | 2 (0.5) |
Joint locking | 0 (0.0) | 0 (0.0) | 5 (1.3) |
Sensation of snap in muscle | 0 (0.0) | 2 (2.9) | 1 (0.3) |
Fever | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Hot flushes | 0 (0.0) | 0 (0.0) | 2 (0.5) |
Sleep disturbances | 0 (0.0) | 0 (0.0) | 3 (0.8) |
Weight loss | 0 (0.0) | 2 (2.9) | 3 (0.8) |
Lump discovered by others | 5 (4.9) | 1 (1.5) | 19 (5.1) |
Noticed blood in underwear | 1 (1.0) | 0 (0.0) | 0 (0.0) |
Bluish skin | 1 (1.0) | 0 (0.0) | 2 (0.5) |
Fatigue | 0 (0.0) | 2 (2.9) | 8 (2.1) |
Occurred in relation to pregnancy | 0 (0.0) | 0 (0.0) | 3 (0.8) |
Dizziness | 0 (0.0) | 1 (1.5) | 2 (0.5) |
Occurred after mononucleosis | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Hematuria | 2 (2.0) | 1 (1.5) | 0 (0.0) |
Flank pain | 2 (2.0) | 0 (0.0) | 0 (0.0) |
Fracture | 1 (1.0) | 1 (1.5) | 0 (0.0) |
Occurred after insect bite | 1 (1.0) | 0 (0.0) | 1 (0.3) |
Yellow skin | 0 (0.0) | 1 (1.5) | 0 (0.0) |
Shortness of breath | 0 (0.0) | 1 (1.5) | 0 (0.0) |
Constipation | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Night sweat | 0 (0.0) | 1 (1.5) | 0 (0.0) |
Intermittent pain | 0 (0.0) | 0 (0.0) | 9 (2.4) |
Headache | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Warm skin | 0 (0.0) | 0 (0.0) | 1 (0.3) |
Patients may have more than one initial presenting symptom.
Routes to diagnosis for 545 patients referred to the Cancer Patient Pathway for sarcomas.
Benign |
Other malignancies |
Sarcomas |
Total population |
|
---|---|---|---|---|
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GP | 320 (85.3) | 47 (69.1) | 89 (87.3) | 456 (83.7) |
Private specialist | 3 (0.8) | 1 (1.5) | 2 (2.0) | 6 (1.1) |
Hospital doctor | 44 (11.7) | 18 (26.5) | 9 (8.8) | 71 (13.0) |
Out of hours GP | 2 (2.9) | 2 (2.9) | 2 (2.0) | 9 (1.7) |
Other |
3 (0.8) | 0 (0.0) | 0 (0.0) | 3 (0.6) |
| ||||
Yes | 94 (30.6) | 25 (46.8) | 27 (32.9) | 146 (33.5) |
No | 213 (69.4) | 22 (53.2) | 55 (67.1) | 290 (66.5) |
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Mean (SD) | 1.4 (0.9) | 1.5 (1.0) | 1.6 (1.1) | 1.4 (0.9) |
Median (IQI) | 1 (1-1) | 1 (1-2) | 1 (1-2) | 1 (1-2) |
| ||||
Mean (SD) | 0.8 (0.7) | 1.1 (0.6) | 1.1 (0.7) | 0.9 (0.7) |
Median (IQI) | 1 (0-1) | 1 (1-1) | 1 (1-1) | 1 (0-1) |
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Yes | 4 (1.1) | 5 (7.4) | 31 (30.4) | 40 (7.3) |
No | 371 (98.9) | 63 (92.7) | 71 (69.6) | 505 (92.7) |
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Yes | 4 (1.1) | 1 (1.5) | 11 (10.8) | 16 (2.9) |
No | 371 (98.9) | 67 (98.5) | 91 (89.2) | 529 (97.1) |
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Yes | 33 (8.8) | 9 (13.2) | 5 (4.9) | 47 (8.6) |
No | 342 (91.2) | 59 (86.8) | 97 (95.1) | 498 (91.4) |
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Yes | 6 (1.6) | 0 (0.0) | 7 (6.9) | 13 (2.4) |
No | 369 (98.4) | 68 (100.0) | 95 (93.1) | 532 (97.6) |
Median numbers of calendar days with interquartile intervals (IQI) for all time intervals are presented in Table
Median number of days (interquartile intervals) spent in each interval of the diagnostic process from first symptom to decision of diagnosis/treatment.
Patient interval |
Primary care interval |
Local hospital interval |
Sarcoma centre interval |
Diagnostic interval |
Total interval | |
---|---|---|---|---|---|---|
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54 (12 : 241) | 8 (1 : 36.5) | 26.5 (13 : 58) | 15 (9 : 22) | 50 (30 : 98) | 155 (61 : 423) |
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Female | 48.5 (9 : 182) | 11 (1 : 39.5) | 23 (13 : 60) | 16 (11 : 23) | 52 (31 : 98) | 144.5 (60 : 341) |
Male | 59 (13 : 319) | 4 (1 : 35) | 28 (13 : 54) | 15 (8 : 22) | 50 (29 : 99) | 158 (62 : 507) |
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<20 | 31 (15 : 84) | 22 (2 : 73) | 21 (11 : 58) | 15 (8 : 20) | 55 (30 : 139) | 118 (47 : 259) |
20–39 | 76 (21 : 539) | 12 (1 : 49) | 36.5 (18.5 : 102) | 17 (11 : 25) | 57 (33 : 148) | 184 (77 : 924) |
40–59 | 110 (17 : 349) | 7.5 (1 : 36) | 32.5 (16 : 72) | 15 (8 : 22) | 62 (31 : 106) | 225 (78 : 591) |
≥60 | 36.5 (4 : 134) | 3.5 (1 : 33) | 21 (11 : 43) | 15 (9 : 23) | 42.5 (27 : 78) | 99 (46 : 240) |
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No | 38.5 (1 : 215) | 22 (4 : 58) | 24 (9 : 67) | 19 (11 : 28) | 57.5 (35 : 116.5) | 147 (49.5 : 342.5) |
Yes | 59 (17 : 251) | 3 (1 : 31) | 28 (15 : 54) | 15 (9 : 21) | 49 (28 : 98) | 156 (63 : 507) |
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No | 33.5 (3 : 236.5) | 1 (1 : 31) | 23.5 (12 : 47) | 15 (9 : 21.5) | 41 (26 : 84) | 95 (43.5 : 389.5) |
Yes | 76 (20 : 241) | 13 (1 : 44) | 29 (14 : 65.5) | 16 (9 : 22) | 58 (34 : 134) | 182 (77 : 465) |
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Under 5 cm | 46 (9 : 200) | 12 (1 : 40) | 30 (15 : 62) | 15 (8 : 22) | 56 (32 : 106) | 147 (59 : 383) |
Over 5 cm | 63 (15 : 319) | 14 (1 : 45) | 23 (13 : 52) | 16 (9 : 23) | 57 (33 : 107) | 180 (76.5 : 571) |
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Subcutaneous | 86 (15 : 528) | 1 (1 : 36) | 28 (15 : 54) | 13 (8 : 20) | 42 (28 : 91) | 181 (60 : 734) |
Subfascial | 58.5 (14 : 234) | 7 (1 : 29) | 29 (15 : 56) | 15 (9 : 21) | 55 (31.5 : 100.5) | 147 (65 : 416) |
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No | 81 (22 : 319) | 9 (1 : 45) | 38 (20 : 78) | 15 (9 : 22) | 63 (38 : 139) | 197 (90 : 690) |
Yes | 45 (11 : 141) | 4 (1 : 25) | 18 (9.5 : 28) | 15 (8 : 21) | 34 (21 : 58) | 94 (45 : 215) |
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No | 55 (11 : 227) | 8 (1 : 40) | 28 (15 : 58) | 15 (9 : 22) | 35 (21 : 88) | 158 (63 : 401) |
Yes | 43 (13 : 323) | 3 (1 : 28) | 18 (6 : 47) | 16 (9 : 25) | 56 (33 : 106) | 135 (51 : 469) |
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Sarcomas | 77 (11 : 261) | 17 (1 : 56) | 29 (15 : 56) | 17 (10 : 24) | 65 (42 : 133) | 176 (83 : 673) |
Other malignancies | 38 (6 : 97) | 12.5 (1 : 25) | 15 (7 : 32) | 20 (14 : 26) | 44 (27.5 : 68) | 103 (49.5 : 202.5) |
Benign | 54 (13 : 296) | 4 (1 : 35) | 28 (16 : 62) | 15 (8 : 21) | 48 (29 : 91) | 158 (59 : 507) |
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Low-grade | 213 (26 : 963) | 21.5 (1 : 50) | 29 (19 : 47) | 17 (8 : 23) | 60 (43 : 103) | 250 (108 : 1665) |
High-grade | 41 (8 : 154) | 17 (1 : 57) | 29 (13 : 58) | 17 (13 : 25) | 71 (42 : 140) | 164 (69 : 376) |
Table
Estimated differences in time intervals at the 50th and 75th percentiles, measured as difference in calendar days with 95% confidence intervals (CI), calculated by quantile regression.
Patient interval | Primary care interval | Local hospital interval | Sarcoma centre interval | Diagnostic interval | Total interval | |
---|---|---|---|---|---|---|
Estimate (95% CI) | Estimate (95% CI) | Estimate (95% CI) | Estimate (95% CI) | Estimate (95% CI) | Estimate (95% CI) | |
|
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50th percentile | 16 (−37 : 69) |
|
0 (−9 : 10) | 0 (−9 : 10) |
|
26 (−34 : 86) |
75th percentile | −7 (−18 : 5) |
|
−2 (−12 : 9) | −2 (−12 : 9) |
|
|
|
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50th percentile | − |
9 (−3 : 22) |
|
|
−2 (−9 : 6) |
|
75th percentile |
|
|
− |
|
−15 (−43 : 13) |
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50th percentile | 26 (−3 : 56) |
|
4 (−2 : 10) |
|
−9 (−22 : 3) | −4 (−40 : 31) |
75th percentile |
|
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|
|
−11 (−52 : 29) |
|
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50th percentile |
|
|
5 (−3 : 13) | 1 (0 : 3) |
|
|
75th percentile | 19 (−10 : 47) |
|
|
1 (−2 : 4) |
|
|
| ||||||
50th percentile |
|
−1 (−12 : 10) |
|
−1 (−2 : 1) | −31 (−68 : 7) |
|
75th percentile |
|
|
|
−2 (−5 : 2) | − |
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| ||||||
50th percentile |
|
5 (−21 : 31) | −6 (−14 : 3) | 1 (−1 : 4) | −1 (−12 : 10) |
|
75th percentile |
|
6 (−6 : 18) | −7 (−21 : 8) | 2 (−3 : 7) | 9 (−9 : 28) |
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50th percentile |
|
2 (−2 : 5) | 3 (−8 : 14) | 1 (−1 : 3) |
|
−34 (−81 : 13) |
75th percentile |
|
−2 (−17 : 13) | −4 (−16 : 7) | 2 (0 : 4) | 5 (−9 : 19) |
|
| ||||||
50th percentile |
|
−1 (−11 : 8) | 0 (−5 : 5) | 0 (−4 : 4) |
|
|
75th percentile | − |
7 (−2 : 16) |
|
|
|
|
All estimates are adjusted for age. Bold numbers indicate statistical significance at the 5% level.
It is worth noticing that patients presenting with a lump tended to have a longer patient interval compared to patients without a lump, whereas the primary care interval and sarcoma center intervals were statistically significantly shortened (−19 days and −4 days, resp.). For patients presenting at the sarcoma center with a tumor over 5 cm, the patient interval and thus the total interval were statistically significantly longer compared to patients with smaller tumors (+24 days and +43 days, resp.). Patients with subfascial soft tissue tumors had a statistically significantly shorter patient interval (−31 days) compared with patients with subcutaneous tumors.
Focusing on 25% of patients waiting longest (the 75th percentile) accentuated the described differences.
The GP was involved in the diagnostic route for the majority of patients, and the main reason for help seeking was pain. Patient interval and local hospital interval constituted the main parts of the total time from first symptom to diagnosis. Sarcoma patients had longer time intervals and patients with other malignancies had shorter time intervals compared to patients with benign conditions. Patients with malignancies visited more local hospital departments than patients with benign conditions. Presence of a lump, large tumor size, and presence of pain increased patient intervals, whereas patients with subfascial tumor location and high malignancy grade had shorter patient interval. High tumor grade and presence of pain increased health system intervals, whereas large tumor size, presence of a lump, and initial GP suspicion shortened health system intervals. Differences were more pronounced at the 75th percentile level.
The strengths of our study lie in a high participation rate and high completeness of data. Nonparticipants were similar in age and gender distribution to participating patients, but we have no information on the number of malignancies or the length of time intervals among nonparticipants. However, the small number of nonparticipants limits the effect of this possible selection bias. Regarding nonparticipating GPs, it could be that GPs of patients with delays would decline to answer, which would cause an underestimation of time intervals. To minimize this problem, we used the patient reported dates to calculate the patient interval and diagnostic interval for patients with missing GP response. Nonetheless, the primary care interval may be underestimated. Patient reported data were validated with interviews, improving the completeness and data quality. GPs were encouraged to consult medical records to reduce recall bias.
We confirmed that time intervals differed depending on presenting symptoms. The presence of pain increased time intervals, possibly due to the fact that in general practice pain is a common symptom with low positive predictive value for serious disease. Pain was also the main reason for sarcoma patients to seek help, but the use of pain as an alarm symptom in sarcomas is debated, and it has been suggested to remove this feature from referral guidelines [
Deeply situated tumors had shorter time intervals in our study, which has also been previously reported [
The proportion of patients with an initial GP suspicion of malignancy was about one-third for sarcomas, suggesting that two-thirds of all sarcomas are found on vague, common, or nonspecific symptoms. This is consistent with English findings showing that sarcomas are more likely to go unnoticed in primary care and be referred outside of the Two-Week Wait referral pathway [
Sarcoma patients with a higher malignancy grade had shorter total time intervals in our study. This difference was mainly driven by a shorter patient interval, indicating that aggressive tumors could have more pronounced symptoms that make the patient seek help faster. It may also be a result of recall bias as patients with clearer symptoms may remember the symptom onset more precisely. More surprisingly, the diagnostic interval was longer for patients with high grade tumors. This finding contradicts results from studies on other cancer types where the patients referred under urgent referral guidelines with the shortest diagnostic intervals had a higher malignancy grade [
The main part of total interval was caused by the patient, followed by the local hospital interval. Other studies have attributed delay in sarcoma patients to GPs in primary care [
A relatively large proportion of the patients referred to the CPP had cancer. This can be explained by the selection process, with investigations at local hospitals before referral to the sarcoma center. This highlights the importance of easy and direct access to investigations from general practice. However, the selection may also be due to a wait-and-see strategy which could lead to later stage at treatment, as discussed earlier.
We found that time to diagnosis was associated with presenting signs and symptoms and presence of GP suspicion. Patients presenting atypically seem to experience longer waiting times before diagnosis, which may be a possible side effect of having alarm symptom based fast track referral programs such as the CPPs. The main part of the total time was caused by the patient interval and it would be relevant to look further into reducing this to support earlier diagnosis. The local hospital delay should also be addressed, for example, by providing easy and quick access to diagnostic investigations locally and optimizing referral criteria.
For more details see Tables
The authors declare that they have no competing interests.
The authors wish to thank both patients and GPs for supplying them with data to perform this study. Furthermore, great thanks are owed to the physicians, nurses, and secretaries at Aarhus Sarcoma Center for help and support in the inclusion of patients. The study was supported by grants from “A. P. Møller og Hustru Chastine Mc-Kinney Møllers Fond til almene Formaal,” “Radiumstationens Forskningsfond,” and “Max og Inger Wørzners Mindelegat.”