PS1508 QUALITY OF LIFE AND PERCEPTION OF HEALTH CARE IN PATIENTS WITH MYELODYSPLASTIC SYNDROMES IN THE UK

Background: Myelodysplastic syndromes (MDS) prevail in elderly patients and treatment is generally not curative. In the UK, the patients’ perception of health care has not been reported. Aims: The aims of this survey are to understand the level of satisfaction with current care in the UK in order to advise on improved quality of care. Methods: A paper based survey was conducted in the UK on MDS patients referring to the MDS UK Patient Support Group. The survey covered 139 items on demographics, referrals, access to health care, financial impact, disease information, treatment and patient reported outcomes (PRO), including the MDS‐specific QoL instrument, QOL‐E. Results: Of 962 questionnaires, 171 were completed by patients of mean age 69 ± 10 years (95 males, 76 females). Symptoms were recalled before diagnosis in 112 patients (66%) and most were referred to haematologists within 8 weeks. Of 120 cases, 65% judged their general practitioners (GPs) as unfamiliar with MDS which was significantly associated with a delay to referral to haematologists ( p  < 0.0001); 1/3 of patients took more than 3 visits for referral with a delay of diagnosis of ≥8 weeks in 50% (p = 0.003). One third do not recall their initial diagnosis and 38 continue not to know their MDS subtype. Knowledge of disease type and prognosis was poorer in those with lower incomes (p = 0.048). The explanation of MDS diagnosis by staff was heterogeneous (Figure). Verbal information was considered sufficient by 39% of patients. Diagnosis required a change of employment for 50% of employed patients. Sixty cases were RBC transfusion dependent (TD). Abilities were compromised in 78% compared to 40% of the RBC transfusion free (TF) patients ( p  < 0.0001). Further, RBC‐TD patients were spending more time worrying about MDS compared to RBC‐TF (p = 0.007) with a higher emotional burden (p = 0.004). QOL‐E showed good reliability in all domains (Cronbach alfa >0.7), except sexual domain. Duration of MDS correlated with QOL‐E functional well‐being (p = 0.01). Physical issues caused by MDS (a separate item in the survey), as perceived by patients, strongly correlated with all QOL‐E domains ( p  < 0.0001). Scores were significantly lower (worse QoL) in RBC‐TD patients in all domains (Figure 8), and the independent impact on QoL was maintained on multivariate analysis. Physical issues caused by MDS (a separate item in the survey) as perceived by patients, strongly correlated with all QOL‐E domains ( p  < 0.0001). Scores were significantly lower (worse QoL) in RBC‐TD patients in all domains and the independent impact on QoL was maintained on multivariate analysis. Summary/Conclusion: This is the largest UK MDS‐specific survey ever conducted focusing on needs, experiences and QoL. We confirm that RBC‐TD is a major determinant of QoL. Our survey shows that GPs’ unfamiliarity of MDS can delay referral to haematologists. MDS diagnosis vocabulary used by clinical staff needs to be consistent and harmonized to avoid confusion and additional worry for patients.