Priorities and preferences of advanced soft tissue sarcoma patients starting palliative chemotherapy: baseline results from the HOLISTIC study

E Younger; R L Jones; D den Hollander; V L M N Soomers; I M E Desar; C Benson; R J Young; A W Oosten; J J de Haan; A Miah; S Zaidi; H Gelderblom; N Steeghs; O Husson; W T A van der Graaf

doi:10.1016/j.esmoop.2021.100258

Priorities and preferences of advanced soft tissue sarcoma patients starting palliative chemotherapy: baseline results from the HOLISTIC study

ESMO Open. 2021 Oct;6(5):100258. doi: 10.1016/j.esmoop.2021.100258. Epub 2021 Sep 9.

Authors

E Younger¹, R L Jones², D den Hollander³, V L M N Soomers⁴, I M E Desar⁴, C Benson⁵, R J Young⁶, A W Oosten⁷, J J de Haan⁸, A Miah², S Zaidi⁵, H Gelderblom⁹, N Steeghs¹⁰, O Husson¹¹, W T A van der Graaf¹²

Affiliations

¹ Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, UK; Department of Medical Oncology, Radboud University Medical Centre, Nijmegen, the Netherlands.
² Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, UK; Division of Clinical Studies, Institute of Cancer Research, London, UK.
³ Department of Medical Oncology, Radboud University Medical Centre, Nijmegen, the Netherlands; Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands.
⁴ Department of Medical Oncology, Radboud University Medical Centre, Nijmegen, the Netherlands.
⁵ Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, UK.
⁶ Academic Unit of Clinical Oncology, The University of Sheffield, Sheffield, UK.
⁷ Department of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, the Netherlands.
⁸ Department of Medical Oncology, University Medical Center Groningen, Groningen, the Netherlands.
⁹ Department of Medical Oncology, Leiden University Medical Center, Leiden, the Netherlands.
¹⁰ Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands.
¹¹ Division of Clinical Studies, Institute of Cancer Research, London, UK; Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands. Electronic address: olga.husson@icr.ac.uk.
¹² Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, UK; Department of Medical Oncology, Radboud University Medical Centre, Nijmegen, the Netherlands; Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands.

Abstract

Introduction: Palliative chemotherapy is the principal treatment of patients with advanced soft tissue sarcomas (STS); however prognosis is limited (median overall survival 12-19 months). In this setting, patient values and priorities are central to personalised treatment decisions.

Patients and methods: The prospective HOLISTIC study was conducted in the UK and the Netherlands assessing health-related quality of life in STS patients receiving palliative chemotherapy. Participants completed a questionnaire before starting chemotherapy, including attitudes towards quality of life (QoL) versus length of life (LoL), decisional control preferences, and decisional conflict. Chi-square and Fisher's exact tests were used to evaluate associations between patient characteristics and preferences.

Results: One hundred and thirty-seven patients with advanced STS participated (UK: n = 72, the Netherlands: n = 65). Median age was 62 (27-79) years. Preference for extended LoL (n = 66, 48%) was slightly more common than preference for QoL (n = 56, 41%); 12 patients (9%) valued LoL and QoL equally (missing: n = 3). Younger patients (age <40 years) prioritised LoL, whereas two-thirds of older patients (aged ≥65 years) felt that QoL was equally or more important than LoL (P = 0.020). Decisional conflict was most common in patients who prioritised QoL (P = 0.024). Most patients preferred an active (n = 45, 33%) or collaborative (n = 59, 44%) role in treatment decisions. Gender, performance status, and country were significantly associated with preferred role. Concordance between preferred and actual role in chemotherapy decision was high (n = 104, 76%).

Conclusions: Heterogeneous priorities and preferences among advanced STS patients support personalised decisions about palliative treatment. Considering individual differences during treatment discussions may enhance communication and optimise patient-centred care.

Keywords: preferences; priorities; quality of life; sarcoma.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Humans
Middle Aged
Palliative Care
Prospective Studies
Quality of Life
Sarcoma* / drug therapy
Soft Tissue Neoplasms*

Grants and funding

DH_/Department of Health/United Kingdom