Poster Session II: Quality of life, palliative & supportive care, ethics and health economics
A cancer diagnosis can have negative effects on a patient's mental health. Watch and wait (WW), or active monitoring, is a common course of action for chronic lymphocytic leukaemia (CLL) patients. WW has been identified as a particular source of distress for CLL patients. Evans et al. (2011) conducted interviews with CLL patients and found that those on WW were as likely to experience depression and anxiety as those in active treatment.
Leukaemia Care conducted a survey of CLL to identify and quantify the issues CLL patients face, particularly those on watch and wait.
The survey asked questions about the patient experience following a CLL diagnosis, including a section on watch and wait. The survey was available to complete as a paper questionnaire or via an online link. 1152 CLL patients responded to the survey. Participants were recruited from across the UK (1126), non-UK (17) or non-disclosed (9). To the best of our knowledge, this is the largest ever CLL patient survey run by a charity.
At diagnosis, 255 started treatment straight away, 883 were placed on watch and wait and 14 declined to answer the question. Of those placed on WW at diagnosis, 243 had not yet been treated at the time of the survey. At diagnosis, only 66% of all respondents fully understood CLL was a cancer and only 42% said they fully understood what was wrong with them. Patients on WW were more likely to be unaccompanied at diagnosis (49%) at diagnosis than those starting treatment (38%). Of those WW at diagnosis, only 60% of CLL patients fully understood the reasons for being placed on WW (49% for those still on WW). Only 66% of those on WW at diagnosis were given written information about WW. 15% of patients who received information about WW said it was difficult to understand, and 34% received no information at all. 53% said they had concerns or worries about WW. There was a correlation between feeling worried and being given understandable information regarding WW. Those without information were 3 times more likely to be worried, those received information but found it hard to understand were 5 times more likely to be worried. Patients on WW at diagnosis were more likely (45%) to report feeling depressed or anxious more often since diagnosis than those starting treatment (31%), this is particularly high for those still on WW (57%). Patients on WW at diagnosis are less likely to be given information on emotional support (38%) than those starting treatment (42%), reducing to 29% for those still on WW. Those on WW at diagnosis, were also less likely (61%) to be offered additional support (such as support groups, buddy schemes or counselling) than those starting treatment straight away (69%), reducing to 39% for those still on WW. Access to a clinical nurse specialist (CNS) has been identified by NHS England as a key driver for patient experience. 61% of those who started treatment straight away had access to a CNS, compared to 54% of those on WW at diagnosis, for those still on WW this drops to 29%.
This survey highlights areas of need to reduce the psychological impact of a CLL diagnosis. There is a need to improve communication at diagnosis, including a tailored explanation of CLL and the rationale for WW, providing high quality written information to take away. The findings suggest that patients on WW need support, such as CNS access, as much as those starting treatment.