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

Abstract

Available online xxxIntroduction: 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 healthrelated 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 ¼ 72, the Netherlands: n ¼ 65). Median age was 62 (27-79) years. Preference for extended LoL (n ¼ 66, 48%) was slightly more common than preference for QoL (n ¼ 56, 41%); 12 patients (9%) valued LoL and QoL equally (missing: n ¼ 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 ¼ 0.020). Decisional conflict was most common in patients who prioritised QoL (P ¼ 0.024). Most patients preferred an active (n ¼ 45, 33%) or collaborative (n ¼ 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 ¼ 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.

Axitinib in patients with advanced/metastatic soft tissue sarcoma (Axi-STS): an open-label, multicentre, phase II trial in four histological strata

“…Treatment decision-making in patients with soft tissue sarcoma is often complex; systemic treatment options often have significant side effects, and the benefits are often relatively modest. The mGPS is worth further evaluation in patients with advanced soft tissue sarcoma to help inform these decisions [ 32 ].…”

The psychological impact of sarcoma on affected patients

“…Some studies show that the QoL of sarcoma patients appears to be stable. 2,[33][34][35][36][37][38] However, other research found more compromised levels of QoL. 39 Sarcoma patients experience lower QoL compared to the general population, 2,4,33,35,40 in different age groups, 41 even if other research detected poorer physical functioning but fewer symptoms such as fatigue and sleep disturbances in sarcoma patients than in the normative population.…”

“…QoL is a well‐explored aspect of the experience of illness in sarcoma patients. Some studies show that the QoL of sarcoma patients appears to be stable 2,33–38 . However, other research found more compromised levels of QoL 39 …”

Fear of Cancer Recurrence in Sarcoma Survivors: Results from the SURVSARC Study

“…Health-related quality of life (HRQoL) is a multidimensional concept that includes the patient’s perception of the impact of the disease and its treatment on physical/biological, psychological and social functioning [ 10 ]. Better knowledge of HRQoL is essential to provide patient-centered care, as cancer patients consider HRQoL to be an important (treatment) outcome [ 9 , 11 ]. Moreover, cured patients and long-term survivors may have long-lasting problems which may be overlooked without a proper HRQoL assessment [ 12 ].…”