Afbakening voor de ontwikkeling van de richtlijn

1. Guideline title

Autistic spectrum conditions: diagnosis and management of autistic spectrum conditions in adults

Short title

Autistic spectrum conditions in adults

2. The remit.

The Department of Health has asked NICE: ‘To produce a clinical

guideline on the management of autistic spectrum disorders in adults’1

3. Clinical need

[Zie voor de informatie over epidemiologie en huidige werkwijze in for the guideline Groot-Brittannië de concepttekst van de Engelse richtlijn ASS op de

website van NICE.]

[Let op: informatie over epidemiologie en huidige werkwijze in Nederland is te vinden in het inleidende hoofdstuk (hoofdstuk 2) van deze Nederlandse conceptrichtlijn.]

4. The guideline

• The guideline development process is described in detail on the NICE website (see section 6, ‘Further information’).
• This scope defines what the guideline will (and will not) examine, and what the guideline developers will consider. The scope is based on the referral from the Department of Health.
• The areas that will be addressed by the guideline are described in the following sections.

4.1 Population

Groups that will be covered

• Adults (18 or older), with suspected or diagnosed high functioning (for example, above average cognitive functioning) or low functioning (for example, profound communication problems) autistic spectrum conditions.
• People with autistic spectrum conditions across the range of diagnostic groups, including atypical autism, Asperger's syndrome, pervasive developmental disorder and Rett's syndrome. [Let op: De Nederlandse richtlijnwerkgroep heeft besloten het rettsyndroom te excluderen.]
• Consideration will be given to the specific needs of:
  • people with coexisting conditions (such as dyslexia, dyspraxia, sensory sensitivity, depression, ADHD, OCD, personality disorders, eating disorders and anxiety disorders);
  • women;
  • older people;
  • people from black or minority ethnic groups;
  • transgender people.

Groups that will not be covered

• (a) Children from birth up to 18 years old.

4.2 Healthcare setting

• Primary, secondary, tertiary, health and social care and healthcare settings (including prisons and forensic services).
• Other settings in which NHS services are funded or provided, or where NHS professionals are working in multi-agency teams.
• (c) The guideline will also comment on and include recommendations about the interface with other services, such as social services, educa- tion services and the voluntary sector.

4.3 Clinical management

Key clinical issues that will be covered

• Signs and symptoms that should prompt health, education and social care professionals working with adults and/or their carers to consider the presence of an autistic spectrum condition. These will include signs and symptoms that should trigger referral for specialist assessment.
• Validity, specificity and reliability of the components of diagnostic assessment after referral, including:
  • structure for assessment, including strengths and skills;
  • diagnostic thresholds;
  • assessment tools, including imaging, genetic and biomedical techniques;
  • assessment of risk;
  • the impact of coexisting developmental, mental and physical conditions on the assessment.
• (c) Psychosocial interventions, including: applied behavioural analysis, cognitive behavioural therapies, social groups, befriending schemes, mentoring and supported employment programmes.
• (d) Pharmacological interventions, including: anticonvulsants, antide- pressants, and antipsychotics for the treatment of symptoms that may arise from coexisting conditions.
• (e) Physical interventions, such as diet.
• (f) Information and day-to-day support (such as a telephone helpline or advocates) for adults with a suspected autistic spectrum condition, and their families and carers, during the process of referral, assess- ment, diagnosis and the delivery of any interventions. [Let op: deze klinische uitgangsvraag zal voor de Nederlandse richtlijn worden behandeld in de eerstvolgende update van de richtlijn.]
• (g) The organisation and delivery of care, and care pathways for the components of treatment and management (including transition planning), based on an ethos of multi-professional working. [Let op: deze klinische uitgangsvraag zal voor de Nederlandse richtlijn worden behandeld in de eerstvolgende update van de richtlijn.]

Clinical issues that will not be covered

• (a) Coexisting conditions if an autistic spectrum condition is not a primary diagnosis.

4.4 Main

outcomes

• Diagnostic accuracy and the identification of coexisting conditions
• Health-related quality of life.
• Functioning in social/occupational/educational settings.
• Outcomes for coexisting conditions, such as depression, anxiety and substance misuse.
• (e) Continuity of care.

4.5 Economic

aspects

Developers will take into account both clinical and cost effectiveness

when making recommendations involving a choice between alternative interventions. A review of the economic evidence will be conducted and analyses will be carried out as appropriate. The preferred unit of effectiveness is the quality-adjusted life year (QALY), but a different unit of effectiveness may be used depending on the availability of appropriate clinical and utility data for adults with autistic spectrum conditions. Costs considered will be from an NHS and personal social services (PSS) perspective in the main analyses. In addition, further analyses may be conducted that will consider wider social costs associated with the care of adults with autistic spectrum conditions. Such costs may include for example special education and training costs, voluntary sector respite care costs and costs of housing services. Further detail on the methods can be found in ‘The guidelines manual' (see ‘Further information').

4.6 Status Scope This is the final scope.

Timing

The development of the guideline recommendations will begin in July 2010 in the United Kingdom.

[Let op: het ontwikkellen van de richtlijnaanbevelingen is in Nederland gestart in januari 2011.]

5. Related NICE guidance

Guidance under development

NICE is currently developing the following related guidance (details 

available from the NICE website):

Autism spectrum disorders in children and young people. NICE clinical guideline. Publication expected August 2013.

6. Further information

Information on the guideline development process is provided in:

• ‘How NICE clinical guidelines are developed: an overview for stakeholders the public and the NHS';
• ‘The guidelines manual';
• These are available from the NICE website (www.nice.org.uk/ GuidelinesManual). Information on the progress of the guideline will also be available from the NICE website (www.nice.org.uk).