CLL survivorship is a concept whose time has come, according to Australian haematologists Dr Pasquale Fedele and Professor Stephen Opat from Monash University.

Writing in the Journal of Clinical Oncology [link here], they said highly effective and less toxic therapies for CLL now meant that most patients will die from non-CLL related causes such as second cancers, vascular disease and infection.

“Many of these conditions and their risk factors can be identified with routine screening and are therefore potentially preventable,” they said.

“Thus, it is likely that further improvement in outcome for our patients with CLL will not come from improvements in CLL-directed therapy, rather from addressing competing causes of death.”

They said a survivorship model of care comprising patient education, surveillance, prevention, early intervention and care coordination was needed to optimise outcomes for patients with CLL.

“Traditional health care models are ill-suited for the provision of survivorship care, with busy practitioners seldom having time to systematically address the complex needs of survivors,” they said.

“A multidisciplinary, survivorship and chronic disease management approach to care in CLL is long overdue.”

They proposed a suite of recommendations across multiple domains of immunity and infections, cardiovascular disease, secondary malignancy, bone disease, frailty, psychological/emotional, social and financial, education and information, and dentition.

“While many of these recommendations are applicable across cancer survivorship, some are more specific to CLL including implications on vaccine efficacy, hypogammaglobulinemia and infection risk, and cardiovascular effects of BTKi.”

Dr Fedele and Professor Opat noted the “prolonged financial toxicity” associated with CLL treatment.

“This may be further affected with indefinite therapies such as BTKi versus fixed duration treatment such as venetoclax + obinutuzumab.”

Early social work referral was one of their recommendations.

They said the optimal model of survivorship care was still a matter for debate but may include primary practitioner-led care, nurse-led care, and supported self-management.

“Selection of the optimal model will be influenced by local health system and individual patient factors. Education and training to expand the survivorship workforce are paramount.”

“The first step, however, is to change the way we consider CLL and its management. Rather than being solely focused on targeting the malignancy, it is important to understand that for most people, this disease represents a chronic incurable multisystem inflammatory disease, with widespread physical complications and psychosocial implications.”