Specialized teams or specialist networks for rare cancers?

Sandrucci, Sergio; Gatta, Gemma; Trama, Annalisa; Tos, Angelo Paolo Dei; Casali, Paolo G.

doi:10.1016/j.ejso.2015.04.002

Cited by 11 publications

(6 citation statements)

References 9 publications

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“…Centralised sarcoma care may improve diagnostic pathways and there is an increasing number of (inter) national guidelines for the diagnosis and management of sarcomas 71–74. Centralising care at sarcoma centres with a multidisciplinary team improves the diagnostic interval because patients (1) do not lose time at local hospitals, (2) receive appropriate imaging for tumour staging and (3) get a higher rate of correct preoperative pathologic diagnosis 10 12 29 30 50 58 75–79.…”

Section: Discussionmentioning

confidence: 99%

The sarcoma diagnostic interval: a systematic review on length, contributing factors and patient outcomes

et al. 2020

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Sarcomas are rare and heterogeneous mesenchymal tumours of soft tissue or bone, making them prone to late diagnosis. In other malignancies, early diagnosis has an impact on stage of disease, complexity of therapeutic procedures, survival and health-related quality of life (HRQoL). Little is known about what length of diagnostic interval should be considered as delay in patients with bone (BS) or soft tissue sarcomas (STS). To quantify total interval (defined as time from first symptom to histological diagnosis) and its components, identify contributing factors to its length and determine the impact on patients’ outcome in terms of mortality and HRQoL. A systematic review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Seventy-six articles out of 2310 met the predefined inclusion criteria. Total intervals, varied broadly; 9–120.4 weeks for BS and 4.3–614.9 weeks for STS. Older age and no initial radiological examinations were contributing factors for a long interval in BS, while in STS results were conflicting. The impact of length of total interval on clinical outcomes in terms of survival and morbidity remains ambiguous; no clear relation could be identified for both BS and STS. No study examined the impact on HRQoL. The length of total interval is variable in BS as well as STS. Its effect on outcomes is contradictory. There is no definition of a clinically relevant cut-off point that discriminates between a short or long total interval. Prospero: CRD42017062492.

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Section: Discussionmentioning

confidence: 99%

The sarcoma diagnostic interval: a systematic review on length, contributing factors and patient outcomes

et al. 2020

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“…Discordance in complex diagnoses is also a challenge for rare cancers, even with recent advances in diagnostic tools, such as ongoing disagreement in the categorisation of sarcomas between pathologists and expert panels [ 43 ]. Additionally, cancer stage at diagnosis, which could be used to improve incidence estimates, is not collected in the WACR and was not available for analysis.…”

Section: Discussionmentioning

confidence: 99%

Descriptive epidemiological study of rare, less common and common cancers in Western Australia

Bilkey

Trevithick

Coles³

et al. 2021

BMC Cancer

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Background There are no epidemiological studies describing rare cancers in Western Australia (WA). We aimed to fill this gap by estimating the incidence and five-year survival of rare, less common and common cancers in WA, based on definitions for rarity used by the Australian Institute of Health and Welfare and cancer groupings from the project on Surveillance of Rare Cancers in Europe (RARECARE). This research will enable policy- and decision-makers to better understand the size and nature of the public health problem presented by rare cancers in WA. It is anticipated that this study will inform improved health service design and delivery for all WA cancer patients, but particularly those with rare and less common cancers. Methods We estimated incidence and five-year survival rates of rare, less common and common cancers in WA using data sourced from the WA Cancer Registry for the 2013–2017 period. Cancers were defined as rare (< 6), less common (6–12), or common (> 12) based on their crude incidence rate per 100,000 people per year. Results Rare cancers make up 21.5% of all cancer diagnoses in WA, with a significantly poorer five-year survival of 58.2% (95% confidence interval (CI) 57.3–59.1%), compared to patients diagnosed with a common cancer, whose five-year survival was 87.8% (95% CI 87.3–88.3%). Survival for less common cancers was significantly poorer than both rare and common cancers, at 48.1% (95% CI 47.3–49.0%). Together, rare and less common cancers represent 48.4% of all cancer diagnoses in WA. Conclusions While rare cancers are individually scarce, collectively over one in five cancer patients in WA are diagnosed with a rare cancer. These patients experience significantly worse prognoses compared to patients with common cancers.

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“…Although these definitions are based on sensible patient volumes representing 1e2 new patients with sarcoma to be treated weekly, data on a clear association between volume and patient outcomes are not currently available. In this regard, some authors agreed on limitations of patient volume as a characteristics reflecting expertise and support creation of treatment networks [29].…”

Section: Defining a Sarcoma Centre: The Volume Effectmentioning

confidence: 99%

“…All these findings support referral of patients with sarcomas to network and centres with high expertise in these tumours. However, this process has been only recently started in many countries worldwide and particularly in Europe [29]. Networks of professionals are increasing performance of second pathology opinion from expert pathologists as well as centralizations to referral units for patient treatments.…”

Section: Introductionmentioning

confidence: 99%