Understanding the experience, treatment preferences and goals of people living with chronic lymphocytic leukemia (CLL) in Australia.

BACKGROUND: Listening to patient voices is critical, in terms of how people experience their condition as well as their treatment preferences. This research explored the patient journey, therapy attributes and goals among treatment experienced adults with chronic lymphocytic leukemia (CLL). We sought to understand patient experiences, needs and expectations to identify areas for improvement of treatment and care delivery. METHODS: Two online surveys were developed for completion by CLL patients. In Stage 1, participants completed a best-worst scaling (BWS) task to evaluate eleven previously validated healthcare journey moments that matter (MTM). Responses were used to generate the patient experience index (PEI) score. In Stage 2, participants completed a survey that included both a discrete choice experiment (DCE) to assess drivers of treatment preferences by evaluating the relative attribute importance (RAI) of seven features and a BWS exercise which explored long-term treatment goals. RESULTS: Twenty-five patients completed Stage 1 and thirty patients Stage 2. Treatment experience was balanced between oral and intravenous medication. The most important/least satisfied MTM were treatment effectiveness, access to support and other treatments as well as monitoring progress. The median PEI score was 66.2 (out of 100). DCE results demonstrated that patients most value treatments for CLL that are associated with prolonged progression free survival (PFS; RAI: 24.6%), followed by treatments that have a lower risk of severe side effects and lower out-of-pocket costs (RAI: 19.5%, 17.4%, respectively). The remainder of the weight in decision making (38.5%) was split between the remaining attributes, namely 'mild to moderate side effects' (13.4%), 'long-term risks' (12.2%), type of treatment (i.e., oral, IV or a combination of oral and IV; 8.7%) and treatment duration (i.e., ongoing versus fixed; 4.2%). Patients preferred oral to intravenous therapy. The most valued long-term treatment goal was to be physically healthy, followed by living a long life, spending time with family/friends, and avoiding hospitalization. CONCLUSION: Treatment experienced patients with CLL are focused on receiving effective, safe therapies and value long PFS. Consideration and discussion of other attributes, such as once daily dosing, oral only medication, out-of-pocket costs and access to support services may affect patient treatment choices and ultimately enhance their healthcare experience and outcomes.

Australian data on the utilisation and duration on treatment of ibrutinib with a proton pump inhibitor in patients with relapsed or refractory chronic lymphocytic leukaemia.

In Australia, over half of patients with relapsed/refractory chronic lymphocytic leukaemia treated with ibrutinib use concomitant proton pump inhibitors (PPIs). High gastric pH reduces the bioavailability of some Bruton tyrosine kinase inhibitors. There was no difference in duration on ibrutinib with or without concomitant PPI (unadjusted P = 0.61; adjusted hazard ratio: 1.23, 95% confidence interval: 0.75-2.02, P = 0.411). PPI use does not affect ibrutinib treatment persistence.

Real-world experience of Australian and New Zealand patients with chronic lymphocytic leukemia and mantle cell lymphoma accessing ibrutinib through a Named Patient Program.

Ibrutinib is a small molecule inhibitor of Bruton's tyrosine kinase indicated for the treatment of relapsed/refractory (R/R) chronic lymphocytic leukemia (CLL), small lymphocytic lymphoma (SLL), and mantle cell lymphoma (MCL). The Named Patient Program in Australia and New Zealand (ANZ NPP) provided access to ibrutinib treatment to 1126 R/R CLL/SLL and 330 R/R MCL patients, prior to Pharmaceutical Benefits Scheme listing. This study aimed to assess the duration of treatment for the ANZ NPP patients, as an indicator of efficacy and tolerability of ibrutinib in the real world. Based on the NPP data, ibrutinib provided a median of 47 months clinical benefit for participants with CLL/SLL and 14 months clinical benefit for those with MCL; outcomes that are consistent with the clinical trial results and further support the well-established efficacy and safety profile of ibrutinib in the real world.

Understanding the Treatment Preferences of People Living with Schizophrenia in Australia; A Patient Value Mapping Study.

Purpose: To examine the treatment and long-term outcome preferences for people living with schizophrenia. Patients and Methods: Sixty-six Australian adults, living with schizophrenia completed a novel online survey with six sections: Demographic characteristics; Disease history; Quality-of-life; Patient support programmes; Discrete Choice Experiment, and Best-Worst Scaling exercise. Results: Participants indicated that they preferred to be involved in treatment decision with their doctor. A minority of participants reported having been previously involved in a patient support programme (28.8%) and only one in six participants had a National Disability Insurance Scheme (NDIS) package (16.7%) with over a third of participants indicating that they were ineligible (37.9%). Participants' average quality-of-life score was 60%. Conclusion: Recent hospitalisation influenced the relative importance of treatment attributes, with effectiveness on hearing voices being the most important treatment attribute. The most important long-term goals were having a stable place to live, being independent, and physical health. People with schizophrenia care about their long-term functional recovery outcomes, rating symptom control and independence as their highest priority. They want to be part of the treatment conversation with their doctors. Therefore, psychiatrists are encouraged to use shared decision-making to establish the treatment course that best aligns with individuals' long-term goals.