| 1. |
|
|
| 2. |
|
|
| 3. |
|
|
| 4. |
- Brolin, S, et al.
(författare)
-
COMPARISON OF EDUCATIONAL NEEDS AMONG PATIENTS WITH ANCA ASSOCIATED VASCULITIS AND SYSTEMIC LUPUS ERYTHEMATOSUS - A PILOT STUDY USING THE EDUCATIONAL NEEDS ASSESSMENT TOOL.
- 2022
-
Ingår i: ANNALS OF THE RHEUMATIC DISEASES. - : BMJ. - 0003-4967 .- 1468-2060. ; 81, s. 1106-1106
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Patients with chronic disease need to learn and adapt to symptoms, treatment, and the impact of disease. Knowledge about the specific disease is one way to empower the patients to cope. We previously reported that disease duration and sex, rather than disease characteristics associate with an increased need of educational support in ANCA associated vasculitis (AAV) (1). Data on how specific educational needs vary between different inflammatory rheumatic diseases are lacking.ObjectivesThe aim of the study was to compare educational needs among two chronic systemic inflammatory diseases, AAV and Systemic lupus erythematosus (SLE) using the Educational Needs Assessment Tool (ENAT).MethodsThis pilot study included cross-sectional data from two separate cohorts, AVV and SLE, from the Rheumatology clinic at Karolinska University Hospital in Sweden during 2009-2022. Inclusion criteria were minimum age of 18 years and literate in Swedish. Exclusion criterion was cognitive impairment interfering with literate capabilities.Educational needs were captured by patients’ answers to the questionnaire ENAT. The ENAT consists of 39 questions, presented as total ENAT and seven domains (managing pain, movement, feelings, disease process, treatment, self-management and, support systems) each containing 4-7 items (from ’not at all important’ = 0, to ‘extremely important’ = 3). The participants’ responses were presented as “mean % of the domain score”, from 0 interpreted as no educational need to 100 as highest educational need. Participants with AAV and SLE respectively were individually matched for disease duration, sex, and education. For comparisons paired samples t-test were used.ResultsTwenty-two matched pairs (86% female), mean (SD) disease duration 5.7 (8) years, were included. The mean age were 43 (14.0) years for AAV 61 and (14.7) years for SLE (p=0.001). Educational length was reported as mean 14 (3.6) years among SLE patients and 13 (2.9) years among AAV patients (p=0.111).In all patients, the mean total ENAT was 60.4% (range 23-100%) and did not differ between the two cohorts (p=0.2) (Table 1). In the pooled group the highest educational need was found in the domains ‘Disease process’ (mean 78.3%) and ‘Self-management’ (mean 75.9%). Lowest educational need was found in the domains ‘Movement’ (mean 46.7%) and ‘Managing pain’ (mean 51.6%).Table 1.Comparison of ENAT scores (mean % of max) (SD) between patient with SLE and AAVENAT domainAll n=44SLE n=22AAV n=22pManaging pain51.6 (29.8)50.8 (28.7)52.4 (32.2)0.867Movement46.7 (35.1)41.9 (34.2)49.2 (35.7)0.500Feelings63.1 (31.0)54.6 (30.6)70.4 (30.3)0.087Disease process78.3 (22.1)73.9 (23.0)83.4 (20.9)0.130Treatments60.7 (35.1)46.4 (36.0)74.2 (30.4)0.021Self-management75.9 (21.1)75.8 (18.8)76.9 (24.3)0.886Support systems54.0 (30.2)49.2 (31.4)58.7 (28.8)0.302Total ENAT60.4 (24.0)55.7 (22.8)65.0 (24.8)0.216Patients with AAV report a higher educational need in total ENAT as well as in all individual domains, compared to SLE (Table 1), but only significantly in the domain ‘Treatments’ where the educational need among AAV was mean 74.2% (30.4) and for SLE mean 46.4% (SD 36.0) (p = 0.02).ConclusionIn this pilot study with SLE and AAV, we found educational needs regarding ‘Treatments’ to be substantially increased among the participants with AAV, compared to SLE, despite that the participants were matched for disease duration and sex, two variables previously found to be indicators of increased educational needs. AAV patients with higher educational needs were older, this result needs to be further explored in a larger sample.References[1]Brolin S, Lövström B, et al. POS1476-HPR The need for information among patients with anca associated vasculitis differs between groups. Annals of the Rheumatic Diseases. 2021;80(Suppl 1):1023.AcknowledgementsWe are grateful to the participating patients, and colleagues assisting in the data collection.Disclosure of InterestsNone declared
|
|
| 5. |
|
|
| 6. |
- Brolin, S., et al.
(författare)
-
THE NEED FOR INFORMATION AMONG PATIENTS WITH ANCA ASSOCIATED VASCULITIS DIFFERS BETWEEN GROUPS
- 2021
-
Ingår i: Annals of the Rheumatic Diseases. - : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 80:Suppl. 1, s. 1023-1023
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Being diagnosed with ANCA associated vasculitis (AAV) can be a frightening experience and means facing changes that involves adapting to new situations1. Patients that are provided adequate information are better equipped to make well informed decisions regarding their care and stay compliant to the treatment plan. In order to provide adequate patient-centered information at the appropriate time and to identify those who may need extra support, the information needs must be explored2. There have been several studies on the information needs of rheumatological patients, although very few studies for patients with AAV.Objectives:The aim of this study was to explore what information patients with AAV need from their rheumatological team and how it differs between groups (gender, disease duration).Methods:Men and women over 18 years were included through a consecutive sample from a Rheumatology or Nephrology Clinic at Karolinska University Hospital in Sweden during 2008-2019. Patients with all forms of AAV (GPA, MPA and EGPA), that had the Rheumatology clinic as primary contact, were included.The participants were given Educational Needs Assessment Tool (ENAT) that measures the patient’s information needs3. The initial question, ‘Do you need information right now about something that can help you with your rheumatic disease?’ is answered yes/no. ENAT then includes 7 domains (Managing pain, Movement, Feelings, Disease process, Treatments, Self-help measures and Support systems) each containing 4-7 items (4-point Likert scale, ’not at all important = 0’ to ‘extremely important = 3’). The total sum is divided by the maximum score and gives the percentage response of maximum score (0-100%), 0% meaning no information need and 100% highest information need. The responses are presented as “mean % of the domain score”. Independent-sample t-test was used to compare the mean between groups. One way ANOVA was used to compare the mean domain score between the different diagnoses and age groups.Results:178 individuals completed the questionnaire, equally divided by gender. Age ranged from 18-85, median 61. 33,7% had been diagnosed within 2 years.The mean total score was 56,8 % of the highest possible score (0-100%). The highest information need was found in the domains ‘Disease process’ (78,1%), ‘Self-help measures’ (68,5%) and ‘Treatments’ (63,6%) whereas lesser need for information was found in the domains ‘Managing pain’ (47,5%), ‘Support systems’ (46,5%) and ‘Movement’ (41,1%). The domain ‘Feelings’ was scored as moderate (55,5%).Those who acknowledge a present information need also scored significantly higher overall in all the domains. Disease duration and gender showed significantly affect the information need. Highest scores were found among women with a disease duration < 2 years with significant difference in 3/7 domains. Age, disease activity, diagnosis and social status did not affect the ENAT scores.Conclusion:Even though only 38% of participants stated a current need for information, the results indicate that there are certain areas that patients with AAV consider important to receive more information about. Special consideration needs to be taken to women with short disease duration since they were shown to have a significantly higher need for information.References:[1]Mooney, J., et al. (2013). ‘In one ear and out the other - it’s a lot to take in’: a qualitative study exploring the informational needs of patients with ANCA-associated vasculitis. Musculoskeletal Care, 11(1)[2]Ntatsaki, E., et al. (2014). BSR and BHPR guideline for the management of adults with ANCA-associated vasculitis. Rheumatology (Oxford), 53(12)[3]Hardware, B., et al. (2004). Towards the development of a tool to assess educational needs in patients with arthritis. Clinical Effectiveness in Nursing, 8(2)Disclosure of Interests:None declared
|
|
| 7. |
|
|
| 8. |
|
|
| 9. |
|
|
| 10. |
|
|
