LIVING WITH CLL: A QUANTITATIVE CROSS-SECTIONAL STUDY OF ITALIAN PATIENTS' EXPERIENCES

[Jm954]

A virtual EHA e-poster.

There is a discernible, often ignored or under-evaluated care management gap in CLL care, where the estimated improved clinical outcome seldom translates into patient-centered benefits.

The patient sample included mainly males (59%), aged between 60 and 80 years (64.1%), retired from active working life (66.8%), with an intermediate-high educational level (i.e. 29.6% middle and 34.2% high school), living in the north of Italy (54.4%), with a family member (81.9%) and with at least a co-morbid condition needing adequate therapy (61.4%). Degree of satisfaction to the 4 domains of questionnaire was as follows:

1. Communication of diagnosis. Nearly 80% of patients declared their satisfaction about communication of diagnosis which was disclosed by hematologists (78%), in an appropriate hospital area (84.7%) and using an understandable and comprehensive language (81.2%). A somewhat frequent concern (81%) was, however, represented by the fear of either not having asked everything or not having understood everything about the clinical follow-up and outcome of the disease.

2. Relationship with physicians, nurses and patients’ associations. The quality of the relationship with the medical and paramedical staff was judged from “good to excellent”, respectively, by 94.6% and 84% of participants. However, 63% of patients complained of a limited interaction with a patient association.

3. Impact of CLL on the daily life. In about 60% of participants, CLL negatively impacted on the emotional, familial and working life. This was independent from treatment, since 57% of patients were not receiving treatment at the time of the survey. A significantly higher emotional distress across the affective (P=0.005), social (P=0.005) and working life (P<0.0001) was recorded in younger patients in comparison to older ones.

4. Aspects related to the management of care. Participants declared their satisfaction with respect to the management of care. In detail, a shared patient-physician choice of treatment was often observed (81%). In contrast, long waiting times at outpatient clinics were source of dissatisfaction for 83% of participants.

Patients indicated 3 areas of potential improvement: quality of information for the access to clinical trials with novel agents, interventions aiming at reducing the waiting time in the hospital and the availability of psychological support.

Conclusion

This large survey is a valid basis to generate working hypotheses on how to improve the day-by-day life of patients with CLL. The needs that have emerged from this survey may contribute to the design of specific patient empowerment programs.

There are high levels of satisfaction with their healthcare here. I wonder if that would be same across the globe?

Jackie