Liverpool Outcome Score Teaching Presentation

1. Liverpool Outcome ScoreTeaching Presentation Brain Infections GroupUniversity of Liverpool, United Kingdom

2. Introduction Using this presentation Background to disability after JE and Liverpool Outcome Score development Liverpool Outcome Score Examples for each question: 1, 2, 3, 4, 5, 6, 7,8, 9, 10, 11, 12, 13, 14, 15 Acknowledgments Contents

3. This presentation can be used either by going through each slide consecutively, moving forward and backward by clicking on the arrows on the bottom right and left of each screen, or by clicking on specific questions on the contents slide to find details of examples. To get back to the start from any slide simply click on the house image. Using this presentation

4. This assessment tool, the Liverpool Outcome Score (LOS), has been developed for use in areas where Japanese encephalitis (JE) is endemic Two versions of this teaching tool for the LOS exist: A smaller file with no video clips A larger file with video clips which is available on CD ROM The tool is freely available, but when using it, please acknowledge the University of Liverpool, UK and PATH. Introduction

5. The impact of JE is felt not just from acute illness and deaths, but disability. Disability affects up to 50% of JE survivors. It impacts family, the health system, and the community. It is important to document disability to: Understand the complete burden of JE disease Advocate for funding from governments and other bodies to control the disease Japanese encephalitis and disability

6. Studies show a wide variation in outcomes of JE survivors; from 19% to 71% have sequelae after JE. Possible reasons for this variation: The study population (adults or children) The time point when assessment occurs after illness Differences in acute care facilities Selection bias Lack of a standard assessment of outcome and disability Outcome after JE

7. There are many components of disability: Physical (motor skills): vision, hearing, speech, walking Self-care skills: self-feeding, bathing, dressing Cognition Behaviour Ideally, need a multidisciplinary team to assess, but challenges with assessments: Time-consuming Lack of standard assessment tool Results from different assessors not comparable Problems with measuring disability

8. Published disability data interesting, but… • Many take a scientific approach, and do not consider important issues that affect activities of daily life: • Can the child walk? • Can they feed themselves? • Will they be independent? • There is a clear need for a simple, rapid way to assess outcome of illness which is: • Consistent when used in different places or by different staff • Able to be used by any health professional • The Liverpool Outcome Score (LOS) has been developed to meet this need.

9. 15 questions in total: 10 questions to the parent or caregiver 5 observations of the child Liverpool Outcome Score: Methodology (1)

10. Includes measurement for the following: Speech Feeding Behaviour Seizures Sitting and standing Liverpool Outcome Score: Methodology (2)

11. Notes: It is important that the parent or caregiver's answer is used (and not the assessor’s opinion). The parents or caregivers are often asked to compare how their child is, compared to other children or siblings of the same age in the community. Liverpool Outcome Score: Methodology (3)

12. Liverpool Outcome Score: Methodology (4)

13. 15 Questions: each scores between 2 and 5 The final Liverpool Outcome Score is the lowest score for any single question. What does the score mean? Score 3 to 5: independent living possible Score 2: likely to be dependent Total score is out of 75 Liverpool Outcome Score: Methodology (5)Outcome score

14. LOS: Outcome score ranges from 1 - 5 5 = Full recovery 4 = Minor sequelae with mild effects on function, or personality change or on medication 3 = Moderate sequelae mildly affecting function compatible with independent living 2 = Severe sequelae, greatly impairing function, likely to make patient dependent 1 = Death Liverpool Outcome Score: Methodology (6)

15. Instructions for conduct of Part 1 of the assessment: Ask the parent or caregiver the questions on the form For some of the questions, as directed, ask the parent or caregiver how this child compares with other children of a similar age in their locality. In the following slides: After each question, examples of a normal child, Child “A,” and then one or more children with some problems are given for you to try and score. You may like to have a question sheet to mark your answers on. Liverpool Outcome Score:

16. Compared with other children the same age in the community, the child’s speech or communication is: The same as other children of this age (5) Changed or reduced (3) Not speaking or communicating (2) 1. Speech or communication

17. For this question look at the following picture. She is a normal 7-year old girl who is singing a song. Child “A”: what score would she get? Then press the button to move forward to the next slide to see the answer. 1. Speech or communication:Child “A”Try and score

18. 1. Speech or communication: Child “A” Back to question Forward to child “B” Forward to answer

19. Compared with other children the same age in the community, the child’s speech or communication is: The same as other children of this age (5) Changed or reduced (3) Not speaking or communicating (2) A normal child scores 5. This includes young children who can only say a few words. 5 1. Speech or communication: Child “A”

20. For this question look at the following picture and try and score her : Child “B”, a 10-year-old girl. Then press the button to move forward to the next slide to see the answer. 1. Speech or communication: Child “B”Try and score:

21. 1.Speech or communication: Child “B The child has a facial palsy affecting the left side of her lower face, involving her mouth, so that her speech is distorted.

22. Compared with other children the same age in the community, this child’s speech or communication is: The same as other children of this age (5) Changed or reduced (3) Not speaking or communicating (2) 1. Speech or communication: Child “B”

23. Child “B” has weakness of the left side of her mouth. Her speech is changed from before her illness and is abnormal compared to other children in her community. Score 3 Did you get it right? If not look, at the picture again. Use the button. 1. Speech or communication: Child “B”

24. The child’s feeding is: The same as other children (5) Occasionally needs help (3) Always needs more help (2) 2. Feeding

25. For this question imagine: Child “A,” a normal 4-year-old girl. Child “B,” a 12-year-old girl who the parents say cannot stand, walk or sit unsupported, or feed herself. View the following pictures and then score Child “A” and Child “B.” 2. Feeding: Child “A” and Child “B” Try and score:

26. 2. Feeding: Child “A”

27. 2. Feeding: Child “B”

28. The child’s feeding is: The same as other children (5) Occasionally needs help (3) Always needs more help (2) Child “A,” normal child, scores 5 If a child cannot feed themselves (Child “B”) and other children their age can, then they would score 2 Note: An infant of 1 or 2 years of age would be expected to need help feeding and so would score 5, as this would be normal for other children, too. 2. Feeding: Child “A” and Child “B”

29. Could a child of this age be left alone without coming to harm? If No, score 5 (5) If Yes, can this child be left alone now? Yes (5) Yes, briefly in familiar environment (3) No (2) 3. Leaving Alone

30. For this question imagine Child “A,” a normal 7-year-old child. Score this child. Child “B,” a 5-year-old child who cannot speak or recognise family members, stand, walk or sit, and who is incontinent and unable to feed or dress themselves and can be aggressive at times. The parents cannot leave them alone at home in case they fall. Score this child. 3. Leaving Alone: Child “A” and Child “B”Try and score

31. Could a child of this age be left alone without coming to harm? If No, score 5 (5) If Yes, can this child be left alone now? Yes (5) Yes, briefly in familiar environment (3) No (2) Child “A,” normal child, scores 5 Child “B,” who cannot be left alone, scores 2 3. Leaving Alone: Child “A” and Child “B”

32. Now look at the picture and try and score: Child “C,” 7-year-old boy Child “D,” 10-year-old girl Child “E,” 18-month-old baby Could a child of this age be left alone without coming to harm? If No score 5 (5) If Yes, can this child be left alone? Yes (5) Yes, briefly in familiar environment (3) No (2) 3. Leaving Alone: Child “C,” 7-year-old boy; Child “D,” 10-year-old girl; Child “E,” 18-month-old babyTry and score:

33. 3. Leaving Alone: Child “C,” 7-year-old boy; Child “D,” 10-year-old girl, Child “E,” 18-month-old baby

34. Could a child of this age be left alone without coming to harm? If No score 5 (5) If Yes, can this child be left alone? Yes (5) Yes, briefly in familiar environment (3) No (2) Child “C” and “D” are old enough to be left alone, score Yes 5 Child “E” is too young too be left alone, but this is normal for a child of this age score No 5 3. Leaving Alone: Child “C,” 7-year-old boy; Child “D,” 10-year-old girl, Child “E,” 18-month-old baby

35. Could a child of this age be left alone without coming to harm? How long can the child be left for? This varies with what is acceptable in the community. For example a baby might be left sleeping, but not completely alone in the home. (Score 5as normal ) A 2-year-old might not be left alone at all in case they came to harm, e.g., fell onto the fire/knocked a cooking pot over. (Score 5 as normal) A 12-year-old who had JE and now cannot remember where she lives could not be left alone in case she got lost if she wandered out of the house. (Score 2 as not normal) 3. Leaving Alone: A few more notes

36. Compared with before the illness, do the caregivers think the child’s behaviour is altered? No, same as before illness (5) Gets angry easily (4) Other behavioural problems (4) Severely abnormal (2) If abnormal, give details 4. Behaviour

37. For this question look at the picture and try and score: Child “A,” a 7-year-old child Child “B,” a 10-year-old girl Child “C,” an 18-month-old girl (Hint: You’ve seen this picture before.) 4. Behaviour: Child “A” “B” “C”Try and score:

38. 4. Behaviour Try and score: These children are all playing happily together

39. Compared to before the illness, do the caregivers think the child’s behaviour is altered ? No, same as before illness (5) Gets angry easily (4) Other behavioural problems (4) Severely abnormal (2) If abnormal, give details____________________________ Child “A”,B”,”C”, normal children, score5 All three children are playing together normally. It’s important to check that the child’s behaviour is normal with parents or caregivers, too. 4. Behaviour: Child “A, B, C”

40. Now look at the picture and try and score Child “D:” 4. Behaviour: Child “D”Try and score:

41. 4. Behaviour Child “D” This child is screaming and irritable

42. Compared with before the illness, do the caregivers think the child’s behaviour is altered ? No, same as before the illness (5) Gets angry easily (4) Other behavioural problems (4) Severely abnormal (2) If abnormal give details ________________________ Child “D” scores4 Note: Clarify further with parents/caregivers. For example, if the child is very disruptive they would score a 2. 4. Behaviour: Child “D”

43. Can other children of this age recognise their relatives, other than their main caregiver? If No, score 5 (5) If Yes, can this child recognise their relatives, other than their main caregiver? Yes (5) Some (3) None (2) 5. Recognition

44. For this question imagine: Child “A,” a normal 7-year-old child Score this child. Child “B,” a 5-year-old child who can’t speak or recognise family members or caregiver, stand, walk or sit, and who is incontinent and unable to feed or dress themselves and can be aggressive at times and can no longer do simple tasks around the home. Score this child. 5. Recognition:Child “A”Try and score

45. Can other children of this age recognise their relatives, other than their main caregiver? If No, score 5 (5) If Yes, can this child recognise their relatives, other than their main caregiver? Yes (5) Some (3) None (2) Child “A,” normal child, scores 5 5. Recognition: Child “A”

46. Can other children of this age recognise their relatives, other than their main caregiver? If No, score 5 (5) If Yes, can this child recognise their relatives, other than their main caregiver? Yes (5) Some (3) None (2) Child “B” cannot recognise family or caregivers so scores 2 5. Recognition: Child “B”

47. Are other children of the same age at school or working? If Yes, is the child: Now back to normal at school or work (5) Not doing as well (4) Dropped a school grade or no longer attending school or work (3) If No, is the child: Able to do activities at home similar to other children his/her age (5) Not able to do as many activities as other children his/her age (4) Not able to do any activities at all (3) 6. School and working

48. For this question imagine: Child “A1,” a normal 7-year-old boy who is back at school and doing well. Score this child. Child “A2,” a normal 7-year-old who does not attend school but is helping with day to day tasks in his community as usual. Score this child. Child “B,” a 5-year-old boy who cannot speak, stand, or walk, who can only sit with support and who is incontinent and unable to feed or dress himself and can no longer do simple tasks around the home. Score this child. 6. School and workingTry and score

49. 6. School and working: Child “A1”School children playing

50. 6. School and working: Child “A2” Helping with tasks at home