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

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Abstract

Background

Sarcomas 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.

Methods

Patients 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.

Results

Survey 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.

Conclusions

This 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 material

The online version of this article (10.1186/s12885-018-4866-8) contains supplementary material, which is available to authorized users.

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Most cited references 31

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The Epidemiology of Sarcoma

Zachary Burningham, Mia Hashibe, Logan Spector … (2012)

Sarcomas account for over 20% of all pediatric solid malignant cancers and less than 1% of all adult solid malignant cancers. The vast majority of diagnosed sarcomas will be soft tissue sarcomas, while malignant bone tumors make up just over 10% of sarcomas. The risks for sarcoma are not well-understood. We evaluated the existing literature on the epidemiology and etiology of sarcoma. Risks for sarcoma development can be divided into environmental exposures, genetic susceptibility, and an interaction between the two. HIV-positive individuals are at an increased risk for Kaposi’s sarcoma, even though HHV8 is the causative virus. Radiation exposure from radiotherapy has been strongly associated with secondary sarcoma development in certain cancer patients. In fact, the risk of malignant bone tumors increases as the cumulative dose of radiation to the bone increases (p for trend <0.001). A recent meta-analysis reported that children with a history of hernias have a greater risk of developing Ewing’s sarcoma (adjusted OR 3.2, 95% CI 1.9, 5.7). Bone development during pubertal growth spurts has been associated with osteosarcoma development. Occupational factors such as job type, industry, and exposures to chemicals such as herbicides and chlorophenols have been suggested as risk factors for sarcomas. A case-control study found a significant increase in soft tissue sarcoma risk among gardeners (adjusted OR 4.1, 95% CI 1.00, 14.00), but not among those strictly involved in farming. A European-based study reported an increased risk in bone tumors among blacksmiths, toolmakers, or machine-tool operators (adjusted OR 2.14, 95% CI 1.08, 4.26). Maternal and paternal characteristics such as occupation, age, smoking status, and health conditions experienced during pregnancy also have been suggested as sarcoma risk factors and would be important to assess in future studies. The limited studies we identified demonstrate significant relationships with sarcoma risk, but many of these results now require further validation on larger populations. Furthermore, little is known about the biologic mechanisms behind each epidemiologic association assessed in the literature. Future molecular epidemiology studies may increase our understanding of the genetic versus environmental contributions to tumorigenesis in this often deadly cancer in children and adults.

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Psychological, social, and behavioral issues for young adults with cancer.

Brad J Zebrack (2011)

Theories of human development suggest that, although all cancer patients experience a common set of life disruptions, they experience them differently, focus on different issues, and attach different levels of importance to different aspects of the experience depending on the time in life at which they were diagnosed. During the critical developmental transition from childhood to adulthood, older adolescents and young adults in particular have typical concerns with establishing identity, developing a positive body image and sexual identity, separating from parents, increasing involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family. Accordingly, cancer-related issues such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruptions in social life and school/employment because of treatment, loss of reproductive capacity, and health-related concerns about the future may be particularly distressing for adolescents and young adults. Psychosocial and behavioral interventions for young adult cancer patients and survivors often involve assisting these individuals in retaining or returning to function in significant social roles, such as spouse, parent, student, worker, or friend. Successful interventions will enable these young people to overcome the detrimental impact of a health crisis and strengthen the internal and external coping resources available to them.

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Predictive value of grade for metastasis development in the main histologic types of adult soft tissue sarcomas: a study of 1240 patients from the French Federation of Cancer Centers Sarcoma Group.

F Collin, L. Guillou, B. Bui … (2001)

Histologic grade is said to be the most important prognostic factor in adult soft tissue sarcomas (STS), but most grading systems have been tested in the overall sarcoma group and the predictive value of histologic grade needs to be assessed specifically for each of the histologic categories. From 1980 to 1994, 1240 nonmetastatic patients were entered in the French STS database. The following parameters were studied: patient's age and gender, previous history, tumor location, size and depth, neurovascular or bone involvement (NBI), histologic type and subtype, and grade (the French Federation of Cancer Centers [FNCLCC] system). Median follow-up for the survivors was 88 months; only 5% of patients were lost to follow-up. The authors performed univariate and multivariate analyses for metastasis-free survival for the overall sarcoma group and for every main histologic type. In order of importance, parameters were respectively retained as independent predictors of metastasis as follows: grade, tumor size, NBI and tumor depth for the overall group, grade and NBI for malignant fibrous histiocytomas (n = 349), tumor size, histologic subtype and grade for liposarcomas (n = 188), NBI, grade and tumor size for leiomyosarcomas (n = 148), grade and NBI for synovial sarcomas (n = 125), grade for unclassified sarcomas (n = 140), and sarcomas of other types (n = 158). No parameter was significant for malignant schwannomas (n = 72) or for rhabdomyosarcomas (n = 60). In this study, histologic grade appeared as an independent predictor of metastasis development in the main histologic types of adult STS, with the exception of malignant schwannomas and rhabdomyosarcomas. Copyright 2001 American Cancer Society.

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Author and article information

Contributors

Eugenie Younger: eugenie.younger@rmh.nhs.uk

Olga Husson: olga.husson@icr.ac.uk

Lindsey Bennister: linzbennister@gmail.com

Jeremy Whelan: jeremy.whelan@uclh.nhs.uk

Roger Wilson: roger_wilson@uk2.net

Andy Roast: andy.roast@gmail.com

Robin L Jones: robin.jones4@nhs.net

Winette TA van der Graaf:

ORCID: http://orcid.org/0000-0001-7549-3338

0208 722 4448 , winette.vandergraaf@icr.ac.uk

Journal

Journal ID (nlm-ta): BMC Cancer

Journal ID (iso-abbrev): BMC Cancer

Title: BMC Cancer

Publisher: BioMed Central (London )

ISSN (Electronic): 1471-2407

Publication date (Electronic): 17 October 2018

Publication date PMC-release: 17 October 2018

Publication date Collection: 2018

Volume: 18

Electronic Location Identifier: 991

Affiliations

[1 ]ISNI 0000 0004 0417 0461, GRID grid.424926.f, Sarcoma Unit, Royal Marsden Hospital, ; London, SW3 6JJ UK

[2 ]GRID grid.481197.2, Sarcoma UK Registered Cancer Charity, ; London, N1 6AH UK

[3 ]ISNI 0000 0004 0612 2754, GRID grid.439749.4, University College London Hospital (UCLH), ; London, NW1 2BU UK

[4 ]ISNI 0000 0001 1271 4623, GRID grid.18886.3f, Division of Clinical Studies, , Institute of Cancer Research, ; London, SW7 3RP UK

Author information

Winette TA van der Graaf http://orcid.org/0000-0001-7549-3338

Article

Publisher ID: 4866

DOI: 10.1186/s12885-018-4866-8

PMC ID: 6192120

PubMed ID: 30333006

SO-VID: bd91511c-707b-4b4a-9984-c6160e11f5d5

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 24 August 2017

Date accepted : 26 September 2018

Funding

Funded by: Sarcoma UK (GB)

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ScienceOpen disciplines: Oncology & Radiotherapy

Keywords: sarcoma,patient experience,age-related,adolescents and young adults,elderly

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ScienceOpen disciplines: Oncology & Radiotherapy

Keywords: sarcoma, patient experience, age-related, adolescents and young adults, elderly

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

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Karger: Oncology

Most cited references 31

The Epidemiology of Sarcoma

Psychological, social, and behavioral issues for young adults with cancer.

Predictive value of grade for metastasis development in the main histologic types of adult soft tissue sarcomas: a study of 1240 patients from the French Federation of Cancer Centers Sarcoma Group.

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