Measuring educational needs among patients with systemic lupus erythematosus (SLE) using the Dutch version of the Educational Needs Assessment Tool (D-ENAT).

OBJECTIVE: The Educational Needs Assessment Tool (ENAT) was developed in the United Kingdom (UK) to systematically assess the educational needs of patients with rheumatic diseases. The aim of the present study was to describe the educational needs of Dutch patients with systemic lupus erythematosus (SLE) by means of a Dutch version of the ENAT (D-ENAT). METHODS: The D-ENAT was sent to a random sample of 244 SLE patients registered at the outpatient clinic of a university hospital. D-ENAT consists of 39 items in seven domains. The D-ENAT domain scores range from 0-16 to 0-28 (higher scoring equals higher educational needs) depending of the number of items in the domain. A total D-ENAT score (0-156) is calculated by summing all 39 items. In addition, age, disease duration, gender, educational level, present information need (yes/no) and the extent of information need (1-4: nothing-everything) were recorded. Univariate regression analysis was used to examine the D-ENAT's potential determinants. RESULTS: The response rate was 122 out of 244 (50%). The mean (% of maximum score) educational needs scores were 56% for 'D-ENAT total score', 62% for 'Self-help measures', 60% for 'Disease process', 58% for 'Feelings', 56% for 'Treatments', 50% for 'Movement', 49% for 'Support systems' and 46% for 'Managing pain'. Being female was significantly associated with higher scoring on the D-ENAT total score (ß 23.0; 95% CI 5.9, 40.3). CONCLUSION: SLE patients demonstrated substantial educational needs, especially in the domains: 'Self-help measures', 'Disease process' and 'Feelings'. The validity and practical applicability of the D-ENAT to make an inventory of SLE patients' educational needs requires further investigation.

Health care in systemic lupus erythematosus (SLE): the patient's perspective.

In order to provide more patient-centered care for patients suffering from systemic lupus erythematosus (SLE), we studied their current satisfaction and preferences regarding future health care delivery. We sent questionnaires to all SLE patients visiting the rheumatology outpatient clinic in Leiden, the Netherlands. The questionnaire comprised three topics: (a) health care needs using a modified version of SLE Needs Questionnaire (range 0-38), (b) satisfaction with care per provider (visual analogue scale, range 0 (not at all)-100 (very satisfied)), and (c) preferences for future healthcare (four items). One hundred and two patients (63 % response) reported an average of 16 (±6) health care needs, with all patients reporting a need in the physical domain. More needs were significantly associated with worse physical functioning and a higher educational level. The average satisfaction score was 73 (±19) with a lower overall satisfaction score being associated with younger age and an educational level higher or lower than average. Regarding preferences for future health care delivery, 75 % of patients showed interest in a yearly standardized medical assessment, 57 % in regular, specialized nurse contacts using internet, 50 % in a yearly inventory on the need for self-management support, and 36 % in an education course. The association of age, education level and physical functioning with health care needs, and/or satisfaction suggest that the delivery of care should be better tailored to the needs of subgroups of patients.

Mortality in neuropsychiatric systemic lupus erythematosus (NPSLE).

The standardized mortality ratio (SMR) for systemic lupus erythematosus (SLE) is three; SMR increases to six in case of renal involvement. Up to now data on survival in case of neuropsychiatric involvement in SLE (NPSLE) have been scarce, therefore we calculated an SMR for NPSLE. Furthermore, we identified characteristics that influenced survival by Cox regression analyses. All patients suspected of NPSLE in our center since 1989 were evaluated and included in this study when a diagnosis of primary NPSLE could be established. Patient's life/death status was tracked using the civic registries. Thirty-two (19%) of the 169 included NPSLE patients died within a median follow-up period of six years (range 0.5-24 years). This resulted in a significantly increased mortality rate compared to the general population: SMR 9.5 (95% CI 6.7-13.5). Hazard ratios (HRs) were highest in patients with acute confusional state (HR 3.4) and older age at diagnosis of NPSLE (HR 1.1). A decreased mortality risk was seen with the prescription of antiplatelet therapy (HR 0.22). The time period in which NPSLE was diagnosed did not significantly influence survival. Most frequent causes of death were infection and NPSLE itself.

Health care usage in Dutch systemic lupus erythematosus patients.

As a first step in the improvement of the organization of care for patients with systemic lupus erythematosus (SLE) we studied their health care usage and its determinants. A questionnaire was sent to 161 outpatients of the rheumatology clinic of a Dutch university hospital. The questionnaire comprised questions on health care usage, quality of life and sociodemographic characteristics. Disease characteristics were extracted from the medical record. Among the 102 responders (63% response rate) the proportions of patients reporting contacts with a rheumatologist because of SLE since onset of the disease and over the past 12 months were 100% and 83%, respectively. These proportions were 93% and 68% for all other medical specialists, 88% and 44% for the general practitioner, 78% and 44% for any health professional, 29% and 9% for care at home, 48% and 17% for hospital admissions and 29% and 2% for day-patient care. Younger age, major organ involvement, the use of immunosuppressants and worse physical functioning were found to be significantly associated with greater health care use. This study demonstrated that health care usage by SLE patients is substantial and involves a variety of health care services. Further research should be directed at patients' satisfaction and patients' needs regarding the optimal organization of integrated, multidisciplinary services that are accessible for SLE patients of all ages.

Pituitary magnetic resonance imaging is not required in the postoperative follow-up of acromegalic patients with long-term biochemical cure after transsphenoidal surgery.

After successful transsphenoidal surgery for acromegaly, life-long follow-up is required, because 10-15% of patients develop recurrence of disease. We assessed whether it is safe to perform postoperative follow-up with only biochemical evaluation in acromegalic patients initially cured by transsphenoidal surgery. We studied 32 patients cured after transsphenoidal surgery for acromegaly during a follow-up of 8.7 +/- 6.4 yr (mean +/- sd). Serial measurements of serum GH during glucose tolerance test and magnetic resonance imaging (MRI) scans were performed. Serial MRI scans were reevaluated by three independent neuroradiologists, who were blinded for the clinical and biochemical data, for growth of suspected tumor tissue. Twenty-three patients remained biochemically cured in the long term, whereas nine of the 32 patients developed recurrence of disease, indicated by elevated serum GH concentrations during glucose tolerance test and clinical symptoms/signs. None of the 23 patients with long-term biochemical cure showed growth of tumor tissue according to two neuroradiologists, whereas the third neuroradiologist assessed three of 23 patients as having tumor growth despite continuing biochemical cure. In the nine patients with biochemical recurrence, no tumor growth was found in the series of postoperative MRI scans, according to two of the three independent radiologists, whereas the third radiologist found tumor growth in four patients with recurrent disease. In conclusion, in patients with acromegaly, initially cured by transsphenoidal surgery, it appears safe to check for recurrent disease during long-term follow-up of these patients by biochemical markers only.