THE USE OF OUTCOME MEASURES WITH CHILDREN/YOUNG PEOPLE WITH MORE SEVERE LEARNING DISABILITIES: Sharing our experiences of what works in practice Alex Crawford/Neil Phillips Worcestershire Health and Care NHS Trust
Sara Sopena Wandsworth CAMHS Learning Disability Team South West London and St Georges NHS Trust 30th October 2014
Current situation Limited, largely anecdotal evidence of measures to use
Range of services operating in isolation
Lack of consensus (Pote & Goodban, 2007)
Some specific issues • Complexity and diversity of needs of CYP with learning disabilities (Yates, et al, 1999) • Learning is likely to be slower • Acquiescence • Heterogeneity
Towards a consensus STEP 1: Initial survey of BPS Division of Clinical Psychology (DCP) Faculty for Children, Young People and their Families LD Network - identifying measures used - experience of using them in practice STEP 2: Publication of articles to stimulate discussion (Rossiter et al, 2013; Phillips et al, 2014) STEP 3: Replication of evaluation project for adults with learning disabilities whose behaviour challenges services by BPS DCP Faculty for Learning Disabilities (Morris et al, 2012)
Findings from initial survey: What do we use? BEHAVIOUR/ MENTAL HEALTH
Strengths and Difficulties Questionnaire (SDQ) Nisonger Child Behavioural Rating Form (N-CBRF) Health of the Nation Outcome Scales for People with Learning Disabilities (HONOS-LD) Developmental Behavioural Checklist (DBC)
The Behaviour Problems Inventory (BPI-01) Developmental Disabilities - Children’s Global Assessment Scale (DD-CGAS) Vineland-II Adaptive Behaviour Assessment System (ABAS-II) Sheffield Learning Disability Outcome Measure (SLDOM)
Parenting Stress Index (PSI) Family Quality of Life Scale (FQOL) Challenging Behaviour Attributions Scale (CHABA) The Emotional Response to Challenging Behavior Scale (ERCBS)
CHI-Experience of Service Questionnaire (CHI-ESQ) Goal-based Outcome measures Session by Session measures
Findings from initial survey Generally • Recommended outcome measures for CYP generally are not always appropriate • Need to capture individual and systemic change • Need to measure quality of life/adaptive functioning as well as behaviour change
Findings from initial survey Clinical usefulness • Full extent of the needs of this group of CYP captured? • Sensitive to change? • Ease of use? • Norm-reference group?
Step 3: Replicating adult survey • Interest group formed consisting of interested professionals working in CYP learning disability services • Development of survey based on outcome measures already in use (identified in Step 1) and based on the adult learning disability study (Morris et al, 2012). • Dissemination of survey through local Special Interest Groups and the DCP CYP Learning Disability Network
Survey questions • • • •
Do you use this measure with families with children with LD? If so, do you find it useful? Do you think respondents find it useful? Do you think respondents (carer and/or clinician) find it easy to complete? • Do you use it as an outcome measure to detect change? • Describe the main advantages/disadvantages of this measure • Do you use any other measures?
Preliminary results • Demographics o N = 49 o But only N = 19 gave their details
Only asked for details to those interested in taking part in bigger project!
Profession (N = 19)
Support worker 11%
Clinical Nurse Specialist 17%
Clinical Psychologist 72%
Type of Service (N=15)
Reported NHS trust but not type of service 13% Facing the Challenge, ABMU Health 7% Complex Behaviour Support team 7%
Child Development Service 7%
CAMHS and FISS 13%
London (all) 47%
West Midlands 11%
Do you use this measure with families with children with LD? The Behaviour Problems Inventory (BPI-01) The Emotional Reactions to Challenging Behavior Scale (ERCBS) Family Quality of Life Scale (FQOL) Nisonger Child Behavioural Rating Form (N-CBRF)
Challenging Behaviour Attributions Scale (CHABA) Developmental Disabilities - Children’s Global Assessment Scale (DDCGAS) Health of the Nation Outcome Scales for People with Learning Disabilities… Session by Session measures YES % Parenting Stress Index (PSI) Adaptive Behaviour Assessment System (ABAS-II) Vineland-II Developmental Behavioural Checklist (DBC) Strengths and Difficulties Questionnaire (SDQ) CHI-Experience of Service Questionnaire (CHI-ESQ)
Sheffield Learning Disability Outcome Measure (SLDOM) Goal-based Outcome measures 0
Specific answers Useful clinically? % 97
Parents find it useful? % 90
Easy to complete? % 87
Advantages/Disadvantages Measure Goal-based Outcome measures
Measures change Highlights parent/carers main concerns Reflective Relevant and specific Considers parents feelings Easy and quick Can measure change
Goals may change over time Skill to collaboratively set
Quick and easy Good way to get feedback Qualitative, meaningful data
Difficult to complete for LD children
Ease of use Covers range of CAMH concers Useful to look at impact of service Measures change
Doesn't monitor change Not appropriate for LD Engagement Designed for commisioners Difficult for parents to complete Relevance for younger children Limited How q's are worded (ambiguous) Lengthy Difficult to complete - English not 1st language Cost
Useful - measures change Easy and clear to complete Appropriate and relevant for LD
Positive and negative q's can be confusing No overall score
Other measures reported Name of outcome measure
Reported by no of services
Aberrant behaviour Checklist
Behaviour grids to measure parental perceptions of difficulties
Checklist of Challenging Behaviour and Rating Scales
Complex Sleep disturbance index
Considering a skills questionnaire such as "Essentials for Living"
HADS for parental mental health
Paddington Complexity Scale.
Parenting competence scale
Parents top 3 concerns
Questionnaire on Resources and Stress.
RCADS for IAPT
Service developed satisfaction questionnaire
Sleep specific measures
Social communication questionnaire
Conclusions Need a package of measures – individual and systemic. On the basis of the preliminary information the survey would seem to suggest that the outcome measures to use are: • Focus of work: • Goals-based outcome measure
• Parenting competence/understanding/confidence: • SLDOM
• Behavioural/emotional needs of child: • DBC
• Satisfaction: • CHI-ESQ
Conclusions • However, need to: • Reach out to other services, type of professionals and locations. • Evaluate effectiveness of OM more systematically (pre and post intervention?, service user feedback?). • In line with IAPT principles. • Look at other measures that are not commonly used but have been rated as being useful. • Need to develop new measures?
References • Pote, H. & Goodban, D. (2007) A mental health care pathway for children and young people with learning disabilities – a resource pack for service planners and practitioners. London: CAMHS Evidence Based Practice Unit. • Phillips, N., Armstrong, H., Reid, C., Rossiter, R. & Morgan S. (2014) Are we making a difference? Measuring the value of our work with children and young people who have a learning disability and behaviour that challenges their families. ACAMH Occasional Papers 32: Intellectual Disabilities and challenging behaviour, 59-66. • Morris, J., Bush, A. & Joyce T. (2012) Outcome measures for challenging behaviour interventions. Leicester: British Psychological Society. • Rossiter, R., Armstrong, H., Morgan, S. & Phillips, N. (2013) Same or different? Measuring outcomes in children and young people with learning disabilities, their families and networks. Child and Family Psychology Review, 1, 84-92.
• Yates, P., Gerralda, M. E. & Higginson, I. (1999) Paddington complexity scale and health of the nation outcome scales for children and adolescents. British Journal of Psychiatry, 174, 417-423.
Contact details • Neil Phillips [email protected]
01684 612740 • Sara Sopena [email protected]
0208 487 63 11