Alarm symptoms of soft-tissue and bone sarcoma in patients referred to a specialist center

Dyrop, Heidi Buvarp; Vedsted, Peter; Safwat, Akmal; Maretty-Nielsen, Katja; Hansen, Bjarne Hauge; Jørgensen, Peter; Baad‐Hansen, Thomas; Keller, Johnny

doi:10.3109/17453674.2014.957086

Cited by 18 publications

(19 citation statements)

References 19 publications

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“…Relatedly, although bone and soft-tissue sarcomas tend to present with fairly specific symptoms (for example, bony or a soft-tissue lump), they principally affect teenagers and young adults, and are associated with relatively high crude proportions of multiple consultations. 20 In multivariable analysis, however, after adjustment for age group and other patient characteristics, the odds of ≥3 consultations for these two cancers are notably reduced, although remaining comparatively high ( Table 1 ).…”

Section: Resultsmentioning

confidence: 97%

Pre-referral GP consultations in patients subsequently diagnosed with rarer cancers: a study of patient-reported data

2016

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BackgroundSome patients with cancer experience multiple pre-diagnostic consultations in primary care, leading to longer time intervals to specialist investigations and diagnosis. Patients with rarer cancers are thought to be at higher risk of such events, but concrete evidence of this is lacking.AimTo examine the frequency and predictors of repeat consultations with GPs in patients with rarer cancers.Design and settingPatient-reported data on pre-referral consultations from three English national surveys of patients with cancer (2010, 2013, and 2014), pooled to maximise the sample size of rarer cancers.MethodThe authors examined the frequency and crude and adjusted odds ratios for ≥3 (versus 1–2) pre-referral consultations by age, sex, ethnicity, level of deprivation, and cancer diagnosis (38 diagnosis groups, including 12 rarer cancers without prior relevant evidence).ResultsAmong 7838 patients with 12 rarer cancers, crude proportions of patients with ≥3 pre-referral consultations ranged from >30.0% to 60.0% for patients with small intestine, bone sarcoma, liver, gallbladder, cancer of unknown primary, soft-tissue sarcoma, and ureteric cancer. The range was 15.0–30.0% for patients with oropharyngeal, anal, parotid, penile, and oral cancer. The overall proportion of responders with any cancer who had ≥3 consultations was 23.4%. Multivariable logistic regression indicated concordant patterns, with strong evidence for variation between rarer cancers (P <0.001).ConclusionPatients with rarer cancers experience pre-referral consultations at frequencies suggestive of middle-to-high diagnostic difficulty. The findings can guide the development of new diagnostic interventions and ‘safety-netting’ approaches for symptomatic presentations encountered in patients with rarer cancers.

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Section: Resultsmentioning

confidence: 97%

Pre-referral GP consultations in patients subsequently diagnosed with rarer cancers: a study of patient-reported data

2016

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“…We noticed an improvement in referral to reference centers over time, from 24.2% of patients in 2010 to 55.6% in 2016. Many sarcoma specialists already warned physicians of the pitfalls of delayed referral, assessing the diagnostic pattern of patients regarding their first symptoms [2,8,[19][20][21][22][23][24]. The implementation of an expert network was one of the strategies proposed to improve efficient referral, avoid misdiagnosis, and organize a straightforward sequence of care.…”

Section: Discussionmentioning

confidence: 99%

Conformity to Clinical Practice Guidelines at Initial Management in Adult Soft Tissue and Visceral Tumors since the Implementation of the NetSarc Network in Eastern France

et al. 2019

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Background Soft tissue sarcomas are rare and heterogenous tumors that are hard to diagnose. The aim of this study was to evaluate local practices and conformity to clinical practice guidelines (CPGs) for their initial diagnostic management. Materials and Methods Patients were carriers of a soft tissue or visceral tumor, presented at a sarcoma tumor board (STB) between 2010 and 2016. Conformity to CPGs was evaluated using ten criteria designed for this purpose. Associations between different factors and conformity to composite criteria, reflecting the three main diagnostic steps (imaging, biopsy and histological report) were analyzed. Results A total of 643 patients were included. A preoperative tumor imaging assessment and a biopsy were performed according to CPGs in 80.8% and 36.8% of the cases, respectively. When done, the first surgical resection was R0 in 30.3% of cases, R1 in 28.6%, and R2 in 10.9%. The rest of the operated patients with sarcoma had a second surgical excision (11.4%), an intraoperative fragmentation (4.3%), or margins were unknown (14.4%). Six of the ten quality criteria presented a conformity rate higher than 70%. Two criteria with a conformity rate lower than 20% were the most controversial: presentation at a STB before biopsy and freezing of a tumor fragment. A multivariate analysis revealed that the common predictor of nonconformity to composite criteria was the initial management in a nonexpert center. Conclusion Initial diagnostic management requires improvement, especially outside of specialized centers. Implications for Practice This article supports the essential need to refer patients with soft tissue tumors to specialized centers to improve the management of sarcomas beginning at the diagnostic phase. Indeed, the reported data were very similar to those already described at the national level of the NetSarc network and indicate the necessity to keep raising awareness about this simple issue: early referral to reference centers will save lives.

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“…Public awareness campaigns for common cancers are well established. Strategies to improve awareness of ‘alarm’ symptoms of sarcomas, such as a lump larger than a ‘golf ball’, increasing size > 5 cm, deep to the fascia, or persistent deep bone pain have recently been introduced to public awareness programs [ 44 , 45 ]. Medical professionals must also be aware that sarcomas can affect AYAs and thus avoid delayed referral in this age group.…”

Section: Discussionmentioning

confidence: 99%

Age-related sarcoma patient experience: results from a national survey in England

et al. 2018

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BackgroundSarcomas are rare, heterogeneous tumours affecting patients of any age. Previous surveys describe that sarcoma patients report a significantly worse experience than those with common cancers. Consequently, Sarcoma UK conducted a national survey and these data were examined for age- and tumour-related differences in patients’ experiences.MethodsPatients were randomly selected from respondents to National Cancer Patient Experience Surveys (n = 900). Differences between patient groups according to age (Adolescents and Young Adults [AYA] 18–39 years, middle-aged 40–64 years, elderly 65 + years) and tumour type (soft-tissue [STS] vs. bone]) were analysed with t-tests or chi-square tests.ResultsSurvey response rate was 62% (n = 558; STS 75%, bone sarcoma 25%). Delay in diagnosis was reported; 27% patients (n = 150) waited > 3 months and initial symptoms were incorrectly interpreted; AYA STS patients were significantly more likely to be treated for another condition, or advised that their symptoms were not serious, than older STS patients. Clinical trial participation was low (6%, n = 35). Symptom burden was high, most commonly daytime fatigue (48%, n = 277) and pain (44%, n = 248). AYAs were significantly more likely to report most side-effects and post-treatment concerns than older patients. Elderly patients were more satisfied with the information and emotional support provided than younger patients, however were significantly less likely to be referred to rehabilitation services.ConclusionsThis study identifies significant age-related differences in the sarcoma patient journey, which are not only related to variation in tumour-types. These results provide rationale for adopting an age-specific approach to the management of sarcoma patients in order to improve overall patient experience.Electronic supplementary materialThe online version of this article (10.1186/s12885-018-4866-8) contains supplementary material, which is available to authorized users.

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Alarm symptoms of soft-tissue and bone sarcoma in patients referred to a specialist center

Cited by 18 publications

References 19 publications

Pre-referral GP consultations in patients subsequently diagnosed with rarer cancers: a study of patient-reported data

Pre-referral GP consultations in patients subsequently diagnosed with rarer cancers: a study of patient-reported data

Conformity to Clinical Practice Guidelines at Initial Management in Adult Soft Tissue and Visceral Tumors since the Implementation of the NetSarc Network in Eastern France

Age-related sarcoma patient experience: results from a national survey in England

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