Patient perspective on Watchful Waiting in CLL
Active surveillance, also known as Watchful Waiting, is the recommended strategy for patients with asymptomatic chronic lymphocytic leukaemia (CLL). Periodical follow-up visits take place until the disease progresses to a symptomatic stage warranting treatment. Previous research shows that patients experience high rates of anxiety and depression symptoms during Watchful Waiting. The aim of this study is to evaluate the Dutch patient perspective on Watchful Waiting.
An online questionnaire was sent through the cmyCLL patient platform with advertisement in the newsletter of patient organisation Hematon. Patients with a diagnosis of CLL without active treatment at the time of participation were included. The questionnaire covered topics such as satisfaction, psychological wellbeing, disease characteristics and health care consumption. The HADS-score questionnaire was used for evaluation of physiological wellbeing. The questionnaire is divided into two 7-item subscales, one for anxiety and one for depression, with each item scored from 0 to 3. A score ≥ 8 out of 21 per subscale was considered represent presence of symptoms of anxiety or depression. Specific questions based on expert opinion of experienced physicians were additionally included in the questionnaire.
A total of 311 questionnaires were analysed of CLL patients during Watchful Waiting. The median time since CLL diagnosis was 5.0 years (IQR 2.0-9.0). Participants reported a median of 2.0 visits within the past 12 months (IQR 1.0-3.0). Patients gave their satisfaction with the CLL clinical care a median score of 8.1 on a visual analogue scale with a range from 1-10 (IQR 7.1-9.1). Most patients (n=235; 76.5%) felt reassured by the visits to the outpatient clinic. However, some patients also reported to experience stress around the planned visits (n=38, 16.2%). In our cohort, there were 102 (32.8%) patients with anxiety or depression symptoms (HADS-score ≥ 8) and 38 patients (26.5%) attributed this to CLL. A proportion of patients (n=26; 8.6%) were unaware of the possibility to contact their physician in case of new symptoms at any time outside routine clinical visits. This lack of awareness was more prevalent in patients suffering from anxiety or depression symptoms (p= 0.024).
CLL patients in Watchful Waiting have a high satisfaction with current clinical care as is provided. However, many experience symptoms of anxiety or depression. Visits to the outpatient clinic are reassuring for a majority of patients, but add psychological stress for some. Tailored alternative surveillance strategies, such as planning patient visits only on demand, may benefit selected patients.