OBJECTIVES

: To investigate the views of adult patients living with SCD in Greece, to measure their experiences within the health care system and to depict the impact of the disease in everyday and social life.

METHODS : The study consists of a two phases approach: (1) a qualitative scoping by focus group discussion with adult patients, members of patient support associations across Greece (2) online nationwide survey to adult patients with SCD with a structured questionnaire based on Picker methodology, tested by participants of phase 1. Focus group discussion with 6 patients took place via digital platform of IQVIA. The quantitative phase was conducted through web-based questionnaire completed by 40 respondents

RESULTS

: A limited proportion of SCD patients (13%) state that the healthcare system treats SCD adequately. Patients spontaneously express their need for a more knowledgeable hospital staff towards SCD and prioritization of SCD patients in case of crisis. SCD impact is more vivid in social life, especially hobbies and leisure activities, as well as at work. About half of patients feel uncomfortable due to SCD, sad and different from others more often than once per month. 42% of patients refer to the burden of SCD when regards to diagnostic tests, medication, physicians’ consultation and hospitalization, while 58% refer to travel expenses. Patients receive adequate information on how to deal the pain and medication intake, however they would wish to be more involved in decision making process with regards to their disease management. The need and search for networking with other patients are mentioned especially among younger patients (up to 40 yrs).

CONCLUSIONS

: This study has demonstrated for the first time a national view of healthcare experience of individuals with SCD and may serve as a tool that will help inform future delivery, design and funding of services for people with SCD in Greece.