Quality statement 2: Information about impulse control disorders

Quality statement

Adults with Parkinson's disease taking dopaminergic therapy are given information about the risk of developing impulse control disorders, when starting treatment and at least annually.

Rationale

Dopaminergic therapy, especially with dopamine agonists, is associated with a risk of developing impulse control disorders. It is important to discuss this risk and provide information to adults with Parkinson's disease, and their family members and carers, when starting treatment and at least annually. This will help them to recognise the symptoms and know where to get help if these develop.

Quality measures

Structure

a) Evidence that written information about the risk of developing impulse control disorders with dopaminergic therapy is available.

Data source: Local data collection, for example, information leaflets.

b) Evidence of local processes to ensure that adults with Parkinson's disease taking dopaminergic therapy have a discussion with a healthcare professional about the risk of developing impulse control disorders when starting treatment and at least annually.

Data source: Local data collection, for example, service protocol.

Process

a) Proportion of adults with Parkinson's disease starting dopaminergic therapy who are given written information about the risk of developing impulse control disorders.

Numerator – the number in the denominator who are given written information about the risk of developing impulse control disorders.

Denominator – the number of adults with Parkinson's disease starting dopaminergic therapy.

Data source: Local data collection, for example, audit of electronic patient health records. The UK Parkinson's Excellence Network UK Parkinson's Audit includes evidence of a conversation with the patient/carer and/or provision of written information regarding potential adverse effects for any new medicines.

b) Proportion of adults with Parkinson's disease starting dopaminergic therapy who have a record of a discussion about the risk of developing impulse control disorders.

Numerator – the number in the denominator who have a record of a discussion about the risk of developing impulse control disorders.

Denominator – the number of adults with Parkinson's disease starting dopaminergic therapy.

Data source: Local data collection, for example, audit of electronic patient health records. The UK Parkinson's Excellence Network UK Parkinson's Audit includes evidence of a conversation with the patient/carer and/or provision of written information regarding potential adverse effects for any new medicines.

c) Proportion of adults with Parkinson's disease taking dopaminergic therapy who have a record of a discussion within the past 12 months about the risk of developing impulse control disorders.

Numerator – the number in the denominator who have a record of a discussion within the past 12 months about the risk of developing impulse control disorders.

Denominator – the number of adults with Parkinson's disease taking dopaminergic therapy.

Data source: Local data collection, for example, audit of electronic patient health records. The UK Parkinson's Excellence Network UK Parkinson's Audit includes evidence of the extent of monitoring for compulsive behaviour in people taking dopaminergic drugs.

Outcome

a) Awareness of the risk of developing impulse control disorders among adults taking dopaminergic therapy for Parkinson's disease.

Data source: Local data collection, for example, patient survey.

b) Awareness of the risk of developing impulse control disorders among family members and carers of adults taking dopaminergic therapy for Parkinson's disease.

Data source: Local data collection, for example, survey of carers.

What the quality statement means for different audiences

Service providers (such as hospital elderly care services, neurology services and general practices) ensure that healthcare professionals are aware of the need to provide oral and written information about the risk of developing impulse control disorders to adults with Parkinson's disease when starting dopaminergic therapy (not just dopamine agonists) and to discuss this with them at least annually. Providers ensure that processes are in place to provide this information and include family members and carers in the discussion, if appropriate, so that they are aware of the symptoms and know where to get help if these develop.

Healthcare professionals (such as neurologists, elderly care consultants, Parkinson's disease nurse specialists, GPs, allied health professionals and pharmacists) provide oral and written information about the risk of developing impulse control disorders to adults with Parkinson's disease when starting dopaminergic therapy (not just dopamine agonists) and discuss this with them at least annually. They also provide information for family members and carers if appropriate.

Commissioners (such as clinical commissioning groups) commission services that ensure adults with Parkinson's disease are given oral and written information about the risk of developing impulse control disorders when starting dopaminergic therapy and have a discussion about impulse control disorders at least annually.

Adults with Parkinson's disease, and their family members and carers (if appropriate) are given written and verbal information about the risk of developing impulse control disorders (impulsive behaviour) when they start taking medicine for Parkinson's disease. They have a discussion with their healthcare professional about this at least once a year.

Source guidance

Parkinson's disease in adults (2017) NICE guideline NG71, recommendation 1.3.8, 1.4.3 and 1.4.4

Definitions of terms used in this quality statement

Information about the risk of developing impulse control disorders

Oral and written information should be given about:

  • the different types of impulse control disorders (for example, compulsive gambling, hypersexuality, binge eating and obsessive shopping)

  • the increased risk of impulse control disorders developing with dopamine agonists

  • the risk that impulse control disorders may be concealed by the person affected

  • who to contact if impulse control disorders develop

  • the possibility that if problematic impulse control disorders develop, dopamine agonist therapy will be reviewed and may be reduced or stopped.

[NICE's guideline on Parkinson's disease in adults, recommendation 1.4.3]