What do we know about survivorship after treatment for extremity sarcoma? A systematic review

Kwong, Terry; Furtado, Sherron; Gerrand, Craig

doi:10.1016/j.ejso.2014.03.015

Cited by 35 publications

(28 citation statements)

References 44 publications

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“…This is a novel national survey which has investigated the reported experience of patients of services after amputation for sarcoma. The frequency of long term problems such as pain, psychological and physical disability in this population demands the provision of appropriate psychological support, pain and rehabilitation services if outcomes are to be optimised [3]. We have shown there is considerable variation in the experience of care and that services often fall short of declared national standards (Table 3).…”

Section: Discussionmentioning

confidence: 97%

“…Treatment for extremity sarcoma routinely involves the removal of large volumes of muscle and bone and radiotherapy, and some patients undergo amputation. Survivors therefore face problems with physical and psychological functioning, pain and reduced quality of life [3]. There are approximately 1035 new diagnoses of extremity bone or soft tissue sarcoma each year in the UK, of which around 7% will be treated with amputation [4].…”

Section: Introductionmentioning

confidence: 99%

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Patient experience after lower extremity amputation for sarcoma in England: a national survey

Furtado

Briggs

Fulton

et al. 2016

Disability and Rehabilitation

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This study demonstrates variation in the reported experience of limb fitting services by sarcoma patients. Areas for improvement include information provision, pre-amputation counselling, psychological support and falls management. Clinicians should be aware services are highly variable, and this may impact on outcomes. Patients treated in sarcoma centres with limb fitting services on site may experience better care. Implications for Rehabilitation Rehabilitation services should strive to meet agreed national standards consistently. Where preamputation counselling involving meeting someone with a similar amputation is not possible, good information including video could be helpful. Services should support rehabilitation in the form of early walking aids and efficient prosthetic repair and maintenance. Psychological support, occupational therapy and physiotherapy support must be provided in the acute and chronic phases, including access to long-term rehabilitation care. Rehabilitation programmes must include training to patients and families on reporting, prevention and management of falls. On site services may support better care. Mechanisms for delivering expert specialist care close to home are needed.

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Section: Discussionmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 99%

Patient experience after lower extremity amputation for sarcoma in England: a national survey

Furtado

Briggs

Fulton

et al. 2016

Disability and Rehabilitation

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“…Survivorship is an area of cancer management on which there has been more focus in recent times. Physical disability is a major feature of the survivorship experience of patients treated for soft tissue sarcoma [81], and follow-up should support the patient in trying to minimise the impact of their treatment. Low activity levels put sarcoma survivors at further cardiovascular risk, which should be considered when constructing a follow-up regimen.…”

Section: Prognosis and Follow-up For Primary Diseasementioning

confidence: 99%

UK guidelines for the management of soft tissue sarcomas

Dangoor¹,

et al. 2016

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Soft tissue sarcomas (STS) are rare tumours arising in mesenchymal tissues, and can occur almost anywhere in the body. Their rarity, and the heterogeneity of subtype and location means that developing evidence-based guidelines is complicated by the limitations of the data available. However, this makes it more important that STS are managed by teams, expert in such cases, to ensure consistent and optimal treatment, as well as recruitment to clinical trials, and the ongoing accumulation of further data and knowledge. The development of appropriate guidance, by an experienced panel referring to the evidence available, is therefore a useful foundation on which to build progress in the field. These guidelines are an update of the previous version published in 2010 (Grimer et al. in Sarcoma 2010:506182, 2010). The original guidelines were drawn up following a consensus meeting of UK sarcoma specialists convened under the auspices of the British Sarcoma Group (BSG) and were intended to provide a framework for the multidisciplinary care of patients with soft tissue sarcomas. This current version has been updated and amended with reference to other European and US guidance. There are specific recommendations for the management of selected subtypes of disease including retroperitoneal and uterine sarcomas, as well as aggressive fibromatosis (desmoid tumours) and other borderline tumours commonly managed by sarcoma services. An important aim in sarcoma management is early diagnosis and prompt referral. In the UK, any patient with a suspected soft tissue sarcoma should be referred to one of the specialist regional soft tissues sarcoma services, to be managed by a specialist sarcoma multidisciplinary team. Once the diagnosis has been confirmed using appropriate imaging, plus a biopsy, the main modality of management is usually surgical excision performed by a specialist surgeon. In tumours at higher risk of recurrence or metastasis pre- or post-operative radiotherapy should be considered. Systemic anti-cancer therapy (SACT) may be utilized in some cases where the histological subtype is considered more sensitive to systemic treatment. Regular follow-up is recommended to assess local control, development of metastatic disease, and any late-effects of treatment. For local recurrence, and more rarely in selected cases of metastatic disease, surgical resection would be considered. Treatment for metastases may include radiotherapy, or systemic therapy guided by the sarcoma subtype. In some cases, symptom control and palliative care support alone will be appropriate.

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“…There is, however, no sarcoma‐specific HRQoL instrument available, and little information regarding patient experiences of sarcoma. Previous systematic reviews have looked at HRQoL in patients with sarcoma but have focused on a specific sarcoma subtype, tumour location, or both. Thus, a comprehensive synthesis of the HRQoL literature for the broader sarcoma cohort is not currently available.…”

Section: Introductionmentioning

confidence: 99%

Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review

et al. 2019

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Objective Health‐related quality of life (HRQoL), psychosocial distress, and unmet health needs are important patient‐reported outcomes (PROs) for patients with sarcoma treated with curative intent. Syntheses of data on these PROs in patients with sarcoma are limited. Methods A systematic review of peer‐reviewed literature published between 2007 and 2017 was conducted using five databases, guided by the PRISMA and Cochrane reporting guidelines. Results Of 7240 articles identified, 31 were included in this review. Compared with healthy individuals, patients with sarcoma frequently scored lower in physical and psychological HRQoL domains and experienced higher rates of self‐image issues, depression, and suicide. However, outcomes for patients with sarcoma were relatively comparable to those with other malignancies. Anxiety symptoms were more common in the diagnosis phase, while depressive symptoms were more common in the treatment phase. Patients who are older, female, and socially isolated often reported lower HRQoL. As a sarcoma‐specific HRQoL instrument is not available, and all studies have used generic instruments, key issues may have been omitted. Conclusion There are few studies reporting data for HRQoL, psychosocial issues, or unmet health needs in this population. A sarcoma‐specific HRQoL instrument is needed to accurately describe outcomes in this population. There is a need for further qualitative research to conceptualise the HRQoL issues relevant to this population, against which to map existing HRQoL instruments and guide adaptation or creation of a new instrument.

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What do we know about survivorship after treatment for extremity sarcoma? A systematic review

Cited by 35 publications

References 44 publications

Patient experience after lower extremity amputation for sarcoma in England: a national survey

Patient experience after lower extremity amputation for sarcoma in England: a national survey

UK guidelines for the management of soft tissue sarcomas

Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review

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