Objectives to know deeply how patients perceive, cope and live with SpA and assess the emotional, social and financial impact spondyloarthropathies (SpA) have on patients' QOL
Methods since Jan to March 2013 a questionnaire has been distributed to patients to auto-evaluate the impact of SpA on emotional, social and economic daily life. Collection was performed both on-line (publishing questionnaires on the official ANMAR website www.anmar.it) and in a conventional way (all local Association federate with ANMAR collected hard copy questionnaires, anonymous and self compiled). Questionnaires allow the analisys of 5 aspects:
Patients profile: social demographic data, desease diagnosed, work status, invalidity pension status and relationship with rheumatic patient associations
Diagnostic process: physicians consulted, information received, examinations undergone
Follow-up: therapy prescribed, clinical examinations undergone, any changes in reference physician
Disease experience: overall perception of health status and desease impact on work, leisure time, family, relationships, sexuality, self perception and emotional status in daily life.
Work activity implications: absenteeism (hours missed because of the disease), presenteeism (productivity on the job) and ensuing social costs of the desease
Results 770 patients spontaneously partecipated to the study, homogeneusly distributed in NW-NE- Central and Southern-Insular Italy. Mean age was 50 years (range 18-84). 70% were of working-age (30-60 years), with intermediate level education (50% had a high school diploma). At the survey time, 55% were receiving wages (45% full time) with an average of 32 work hours/week. Patients had to wait 3 years (4 in South) since the first symptoms appearance to diagnosis and they consulted different specialists. Rheumatologists are the reference specialists. 7/10 patients didn't know the desease until they were diagnosed with and 1/3 patient experienced hard malaise associated with the desease; repercussions on overall QOL are evident. 50% experiences limited working conditions (30% reported having missed at least 1 hour from work in the past week due the desease); 20% had modified their work projects, 10% had been discriminated, 50% had considered filing for civil invalidity status. Deseases affect patients' self-sufficiency in 25% (and worsens as patients grow older) with significant consequences also for the patient's family. 50% experiencies feelings of anger and frustration which make changes in self-perception (60%) and affects women to a greater extent. Financially, patients enjoying partial well-being have an average loss of €106/week and patients experiencing persistent malaise €216/week. By the way only 10% get perception of this.
Conclusions SpA have an hard impact on patients' QOL concerning both personal, emotional and social aspects. Work and self-sufficiency are deeply damaged both in patients and in their family. Indirect costs – growing with the desease progression – hardly impact on economic side.
Helping these patients to improve QOL with efficient therapies and supports (psycological too) let them not only to improve their healty status, but also to reduce social costs of the illness. It needs to improve knowledge on these deseases in general population in order to reduce diagnostic process time: at the moment in 7/10 patients the desease is totally unknown.
ANMAR Atlantis Survey.
Disclosure of Interest None declared