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

Eugenie Younger,Winette Ta Van Der Graaf,Lindsey Bennister,Olga Husson,Jeremy Whelan,Robin L Jones,Roger Wilson,Andy Roast

doi:10.1186/s12885-018-4866-8

Eugenie Younger, Winette Ta Van Der Graaf + Show 6 more

Open Access

https://doi.org/10.1186/s12885-018-4866-8

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Abstract

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.

Highlights

IntroductionHeterogeneous tumours affecting patients of any age
Sarcomas are rare, heterogeneous tumours affecting patients of any age
AYA patients (STS and bone sarcoma) were significantly more likely to have been treated with chemotherapy than middle-aged and elderly patients (80% AYA vs. 40% middle-aged vs. 22% elderly: p < 0.001)

Summary

Introduction

Heterogeneous tumours affecting patients of any age. Sarcoma UK conducted a national survey and these data were examined for age- and tumour-related differences in patients’ experiences. Sarcomas are rare and heterogeneous tumours of mesenchymal origin, which account for approximately 1–2% of all adult solid malignancies [1]. Diagnosis is often delayed due to a lack of public awareness of the symptoms of sarcoma, coupled with limited experience among healthcare professionals [3]. Many sarcomas demonstrate an aggressive phenotype and around half of patients with high grade tumours will eventually develop incurable disease [4, 5]. Despite improvements in the prognosis of many other solid malignancies and certain sarcoma subtypes, the five-year overall survival for soft tissue and bone sarcomas remains poor at around 50–60% [6]

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