Research Article: Does palliative chemotherapy really palliate and are we measuring it correctly? A mixed methods longitudinal study of health related quality of life in advanced soft tissue sarcoma

Date Published: September 26, 2019

Publisher: Public Library of Science

Author(s): Nicholas Gough, Jonathan Koffman, Joy R. Ross, Julia Riley, Ian Judson, Robert S Benjamin.


Soft tissue sarcoma (STS) is a rare cancer type that when locally advanced or metastatic, is predominantly treated with palliative chemotherapy with the aim of improving both quantity and quality of life. Given modest survival data after commencing first line chemotherapy, this study examines (i) what constitutes health related quality of life (HRQoL), (ii) whether the most commonly used HRQoL assessment tool measures this and (iii) to what extent HRQoL, and its components, change during and after treatment.

Mixed-methods longitudinal study of 66 sarcoma patients living with STS (42 commencing chemotherapy, 24 under surveillance after completing chemotherapy) involving serial EORTC QLQ-C30 questionnaires and nested-qualitative semi-structured interviews with a sub-sample of participants. EORTC QLQ-C30 score change from baseline to primary evaluation point was examined using a paired t-test. Interviews were analysed using the framework approach before both datasets were integrated.

Five main factors, including control of pain, were identified by study participants as important components of HRQoL; these are examined within the EORTC QLQ-C30. However, others e.g. independence loss and common causes of anxiety, are not. Whilst social and psychological domains are addressed by the EORTC QLQ-C30, the quantitative change over time did reflect qualitative descriptions of decline.

A key finding was that the EORTC QLQ-C30 assesses some but not all of the patient-reported components of HRQoL in sarcoma patients highlighting the need for either STS specific modules within the EORTC QLQ-C30 or a completely new STS specific HRQoL tool. First line palliative chemotherapy improves specific symptoms known to be prevalent and to influence HRQoL in this patient group which in some patients may translate to sustained improvement in HRQoL: further exploration and validation of these findings in larger prospective studies are warranted.

Partial Text

Soft tissue sarcomas are a heterogeneous group of rare malignant tumours accounting for 1% of all adult cancers with an incidence of approximately 5 per 100,000 per year[1,2]. Surgery, often supplemented by adjuvant radiotherapy, offers the only reliable chance of cure for localised disease.[3] However, over 50% of patients will develop metastases and die of their disease [4]. In the locally advanced inoperable or metastatic setting, systemic chemotherapy is the mainstay of treatment [4,5]; its principal aim is to palliate i.e. establish disease control in order to improve both quantity and quality of life.

Seventy-nine sequential patients met the inclusion criteria of who 66 agreed to participate giving an 84% response rate (Fig 1). Baseline characteristics of all participants are presented in Table 1 and further details of the qualitative sub-group interviewed are found in Table 2.

To our knowledge, this is the first mixed methods longitudinal study exploring HRQoL among patients living with advanced STS. Our findings identify three areas that warrant further consideration:

This mixed methods study has identified the limitations of currently available HRQoL tools in relation to this population. Not all aspects of HRQoL considered to be important to those with advanced STS are captured in the current version of EORTC QLQ-C30. Furthermore, functional EORTC QLQ-C30 domains did not change longitudinally in line with qualitative data suggesting poor content validity or response to change in some of the EORTC QLQ-C30 scales. This supports the need for the development and testing of a STS specific HRQoL tool.




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