What do patients really want to know Results from the Educational Needs Assessment Tool (ENAT) Mwidimi Ndosi & Jackie Hill

Transcription

1 What do patients really want to know Results from the Educational Needs Assessment Tool (ENAT) Mwidimi Ndosi & Jackie Hill

2 Mwidimi Ndosi What do patients really want to know Results from the Educational Needs Assessment Tool (ENAT) This speaker has no conflicts of interest

3 What will this talk cover? Why we need a tool to help us understand what patients need to know What the Educational Needs Assessment Tool (ENAT) is How the tool was developed and tested What patients think they need to know about their arthritis

4 Why do we need the ENAT? Self management is an integral part of effective patient management Teaching patients is time consuming and therefore expensive To be meaningful to the patient information must reflect their perceived needs

5 What is the ENAT? Educational Needs Assessment Tool Self completed patient questionnaire Comprises 7 domains Takes just a few minutes to complete Provides data to enable health professionals to provide information that is meaningful and timely

6 How is the ENAT used? Used as a clinical tool Research tool to evaluate educational interventions Audit tool

7 How was the ENAT developed? First stage was undertaken in Barnsley Interviews with 11 patients, 2 doctors, 2 nurses & 2 therapists were tape recorded Transcribed verbatim Analysed using Framework

8 Research Identified 7 domains of need Managing pain Movement Feelings Arthritis Treatment from HP s Self-help measures Support from others (6 items) (5 items) (4 items) (7 items) (7 items) (6 items) (4 items)

9 ENAT FORMAT How important is it for you to know NOW more about the following: Taking the best medicine for me Not at all important A little important Fairly important Very important Extremely important X Using heat or cold on painful joints X Ways to distract from the pain X Using relaxation X Using exercise X Using acupuncture, ultrasound or hydrotherapy X

10 Pilot testing Convenience sample 20 patients Rheumatology outpatient clinic Any type of arthritis Found the tool acceptable and easy to use Resulted in changes to: Wording One question TENS omitted

11 Test / Retest 97 consecutive patients with arthritis All attended clinics Sent the ENAT by post

12 Demographics of Respondents 76 (78.4%) returned ENAT 48 (63%) female 36 (47%) <60 yrs age

13 Demographics of Respondents 55 (73%) arthritis >5 years 15 (20%) arthritis 1-5 years 5<1 year 61 (80%) secondary education to 16 years

14 Test / Retest 57 patients returned both questionnaires No significant difference between the means Correlation (ICC) = agreement (p<0.01) Initial testing demonstrated reliability and repeatability

15 Results Published Hardware B, Lacey AE, Shewan J. Towards the development of a tool to assess the educational needs in patients with arthritis. Clinical Effectiveness in Nursing, 2004;8(2):

16 Further Validation ENAT intended to be used as a generic arthritis tool Each disease needs to tested separately RA patients in the first instance Rasch analysis

17 Rasch Analysis (RA) Collected completed questionnaires from: 125 patients with RA In patients One day unit Out patients

18 Rasch Analysis (RA) Men 26 (21%) Women 99 (79%) Age range School leaving age (median 56yrs) (median 16yrs)

19 Rasch Analysis (RA) Patients found it easy to complete Commented that it reflected their needs ENAT subscales demonstrated good fit to Rasch model 7 Domains overall fit was excellent ENAT is robust in RA

20 Generic ENAT Awarded an Arthritis Research UK (arc) grant to undertake this work Collected 125 completed ENATs from patients with AS, OA, PsA, SLE, SSc Rasch analysis undertaken on each cohort No changes needed in the ENAT

21 Aims of this study were to assess the patients perceptions of their educational needs in a variety of rheumatic diseases

22 Six Rheumatic Diseases Ankylosing Spondylitis (Leeds) Osteoarthritis Rheumatoid Arthritis Psoriatic Arthritis (Leeds) (Leeds) (Leeds) Systemic Lupus Erythematosus (Leeds) Systemic Sclerosis (Leeds/Salford)

23 Cohort Demographics N = (68%) female 252 (32%) male Age range 18 yrs 86 yrs Median age left full time education = 16yrs

24 Demographic Data Disease (N) Median Age (range) Median Disease Duration (range) Female/ Male ratio AS (133) 44.5 (20 78) 20 (<1 60) 1:2 OA (127) 64.5 (18 85) 10 (<1 38) 3:1 RA (125) 57 (19 86) 13 (<1 47) 4:1 PsA (130) 43 (18 79) 10 (<1 45) 1:1 SLE (144) 45 (19 69) 7 (<1 56) 9:1 SSc (128) 55 (18 86) 10 (1 56) 4:1

25 Gender Distribution by Diagnosis

26 What did the ENAT tell us? Seven domains of need Managing pain Movement Feelings Arthritis Treatment from HP s Self-help measures Support from others

27 What did the ENAT tell us? Patients wanted more information about: Their actual disease Treatments How to help themselves Rated as slightly less important: How to cope with pain Emotions Movement

28 What did the ENAT tell us? Patients rated how to get support from groups, organisations etc as least important of the 7 domains

29 What else did the ENAT tell us? Female patients have more educational needs than males (p = 0.00) across all 7 domains Patients who had left full time education by the age of 16yrs perceived they had more educational needs than those with a higher level of general education (p = 0.001)

30 What else did the ENAT tell us? Older patients (>52yrs) felt they had greater need of knowledge about managing pain, treatments, movement and support from others (p=0.001)

31 Were there any differences across the 6 diseases? Overall people with AS and PsA had less educational needs than the other 4 groups (p=0.00) Those with AS had lower levels of need in all domains excepting disease process Those with PsA had less needs with regard to movement and treatments No difference in perceived needs of people with OA, RA, SLE and SSc

32 Conclusion The ENAT is a robust and simple to use tool It helps patients to identify their educational needs Helps practitioners to provide timely and appropriate information to the patient According to this study, there are different needs according to age, educational attainment, gender and disease

33 Many Thanks To.. The patients who took part Salford Hospital for allowing us access to patients Barnsley Group for their collaboration Arthritis Research UK for funding