1. Mapping and UTILIZATION of health care services from patients with newLY DiagnosED systemic lupus erythematosus
Rapsomaniki P.1, Terizaki M.1, Kabouraki E.1, Melissourgaki M.1, Koutsogianni E.2, Starra A.2,
Fanouriakis A.1, Bertsias G.1,3, Gergianaki I.1,3
1 Rheumatology, Clinical Immunology and Allergy, University of Crete, Heraklion, Greece; 2 Arthritis Foundation of Crete, Greece; 3 Institute of Molecular Biology-Biotechnology, FORTH, Greece
Background
The course and usage of health care services of patients with a new diagnosis of systemic lupus erythematosus (SLE) has not been described in Greece, a country with a mixed health care system combining public and private facilities and services.
Aim
To analyze the use of health care services and map the course of patients from the time of first symptoms until the final diagnosis of SLE in the island of Crete, an area with a widely known referral centre for rheumatic diseases and an active patients’ association.
Patients and Methods
Patients with a first diagnosis of SLE within the last 3 years were recruited from an open call from the Arthritis Foundation of Crete. All patients underwent interview through a structured questionnaire. Questions aimed to scrutinize the “journey” within the health care system and included: timing and type of first encounter with a health care service, number and specialty of physicians until the diagnosis of SLE was reached, variety of diagnostic tests ordered, and time to fist treatment after the onset of symptoms.
Results
Herein, we report on our preliminary results from the first 20 patients [19 women – 1 man, median (IQR) age 46 (18) years)] who fulfilled the inclusion criteria and underwent interview. Demographic characteristics are shown in Table 1.
Picture 1. Patient delay in seeking medical care for symptoms at disease onset and prior to SLE
No of patients
Picture 2 shows the different medical specialties visited by the patients for initial examination and assessment; of note, for 20% of the patients the first health professional was a specialist rheumatologist.
Picture 2. Medical specialty of first examination for patients seeking medical care for symptoms related to SLE
Following initial medical evaluation, referral to rheumatologist and subsequent therapy initiation spanned a total time period of less than two months (median 1.6 months, Table 2), suggesting effective access of patients to specialist care.
The study is ongoing to recruit more patients and also evaluate economic issues related to utilization of public and private health services.
Table 1. Demographic characteristics of patients
Female gender, n (%)
19 (95)
Age, median (IQR)
46 (18)
Residence [urban/rural, n (%)]
80/20
Educational status
None
Elementary
Lower 2ary
Higher 2ary
Technical
Higher
0 (0)
5 (25)
4 (20)
6 (30)
1 (5)
Table 2. Components of delay until therapy initiation for SLE
Time lag
Months, median (IQR)
Symptom onset to initial medical examination
1.7 (6)
Initial medical examination to rheumatologist referral*
0.9 (1.5)
Rheumatologic consultation to therapy initiation
0.9 (1.4)
Total
5.8 (5.3)
Before the onset of symptoms, 80% of patients had no or little knowledge of the disease.
The most common initial symptoms prompting medical examination were photosensitivity/facial rash (65%), arthralgias (30%), fatigue (25%) and other skin rash (25%).
Patient delay in symptom evaluation is depicted in Picture 1, with 50% of patients seeking primary medical care within the first month of symptoms.
* Excluding patients for whom the initial physician was a rheumatologist (n=4)
Conclusions
Our preliminary results suggest a relatively short delay between symptom onset and therapy initiation for SLE in Crete. Possible explanations include increased awareness in primary health care physicians due to the presence of a well-known referral centre and ease of access to specialist rheumatologic care.
Further confirmation of the results in larger number of SLE patients is ongoing