1. LUPUS PATIENTS’ NEEDS AND PERSPECTIVES IN SOUTHEASTERN EUROPE: DATA FROM THE CRETAN LUPUS COHORT “LETO”
Kabouraki E.1, Rapsomaniki P.1, Terizaki M.1, Melissourgaki M.1, Koutsogianni E.2, Starra A.2, Kalantzi T. 2, Ploumidou N. 2, Sidiropoulos P. 1, Bertsias G.1,3, Gergianaki I.1, Fanouriakis A.1
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
In chronic diseases such as systemic lupus erythematosus (SLE), self-management is considered a critical element of care, which needs to be supported by a permanent educative procedure. In this context, nursing instructions are a cornerstone in influencing patient perceptions and facilitating self-care. In order to provide instructions, nurses have to understand patient’s needs and factors affecting those needs. Moreover, these instructions need to be adjusted to the local culture. There is a paucity of such data in patients living in Southern Europe.
Aim
To better understand the needs and perspectives of lupus patients in a Southern European country.
Patients and Methods
A structured questionnaire was developed in collaboration with the patients’ association (Arthritis Foundation of Crete), based on the validated Educational Needs Assessment Tool (ENAT). Issues addressed in the questionnaire included: patients’ beliefs regarding the causes of lupus and the factors that influence the disease, unmet needs related to physical (pain, fatigue), psychological and socioeconomic issues, aspects of information-giving (including timing and extent of information about prognosis and long-term risks) as well as interest in self-management and telephone-based support.
Results
A total of 41 patients completed the structured questionnaire (95% women, mean (SD) age 46.8 (11.7) years. Regarding patients’ perspective as to the cause of SLE, almost half attributed it to a combination of immune deregulation, psychological factors (anxiety etc.) and genetic background (Picture 1).
Picture 2. Extent of information SLE patients are willing to know regarding their disease
Table 1. Issues of maximum and minimum importance to patients related to the disease and self-care
Maximum importance (% of participants rating as “of utmost importance”)
Minimum importance (% of participants rating as “of utmost importance”)
Prognosis (95%)
Use of acupuncture or other complimentary modalities for pain relief (17%)
Causes of the disease (88%)
Use of orthopedic medical devices (31%)
Ways the disease may affect my children (88%)
Use of alternative therapies (31%)
Ways to relieve pain (88%)
Use of warm or cold dressings for painful joints (46%)
Ways to cure arthritis (88%)
Ways of exercise (49%)
In terms of compliance to therapy over the past 6 months, participants reported a high compliance rate, with a median (IQR) self-reported compliance score of 9 (2), on a scale from 0 to 10. Reasons for adherence to therapy included some combination of physician consultation, prevention of flare/health deterioration and symptom relief (90% of patients). Toxicity from steroid therapy constitutes a major concern. Picture 3 shows patient responses regarding the influence of steroid-related side effects on self-esteem, family/business relationships and daily activities.
Picture 1. Patients’ beliefs regarding the cause of lupus
Picture 3. Patient-rated impact of the most common steroid side effects on various aspects of everyday life
All patients expressed significant interest in obtaining information related to their disease from health professionals, with more than 80% willing to “know everything” related to lupus (Picture 2). Specific issues of maximum and minimum importance to patients are shown in Table 1.
Not important
Moderately
Remarkably
Unrelated
to steroids
Slightly
Significantly
Conclusions SLE patients express the need for adequate guidance from healthcare professionals. In our cohort, despite concerns for therapy side-effects, patients report high compliance rates due to firm physician-patient relationships and fear for disease flares.
References
Hardware B, Lacey E, Shewan J (2004) Towards the development of a tool to assess educational needs in patients with arthritis. Clin Eff Nurs 8:111–117.