Rare diseases

  • Quality standard
  • QS214
  • Published: 

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Quality statement 3: Information provision

Quality statement

People undergoing diagnosis for a rare disease, with a newly diagnosed rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations are provided with clear and accurate information to aid self-management.

Rationale

Clear and accurate information about rare diseases can help people self-manage these diseases, undertake activities of daily living and make informed choices. Information needs can change over time as these diseases progress. When information is unclear or inconsistent, it can increase anxiety and reduce people's ability to participate in decisions about their care. Many disease-specific patient and community organisations provide information on living with a rare disease. The Patient Information Forum publishes a list of certified organisations with information on rare diseases.

Quality measures

The following measures may be useful to support assurance and improvement. They are examples of how the statement could be measured but may require adaption depending on local, regional and national commissioning arrangements.

Process

a) Proportion of people undergoing diagnosis for a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations who receive clear and accurate information.

Numerator – the number in the denominator who report receiving information.

Denominator – the number of people undergoing diagnosis for a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations.

Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.

b) Proportion of people with a newly diagnosed rare disease who receive clear and accurate information.

Numerator – the number in the denominator who report receiving information.

Denominator – the number of people with a newly diagnosed rare disease.

Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.

What the quality statement means for different audiences

Service providers (primary, secondary and tertiary care providers) ensure that their staff have access to information to help people undergoing diagnosis for a rare disease, with a newly diagnosed rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations with self-management. They also ensure staff can signpost these people to holistic support.

Healthcare professionals (such as doctors, nurses and allied health professionals) ensure that they know where to find information to help people undergoing diagnosis for a rare disease, with a newly diagnosed rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations with self-management. Staff also know how to signpost these people to holistic support.

Commissioners ensure that the services they commission to support people with a rare disease provide information to help with self-management and signpost to holistic support.

People having tests for a rare disease, with a newly diagnosed rare disease or with a suspected rare disease that has not yet been formally diagnosed are given information on their condition and any relevant patient organisations to aid with day-to-day self-management of their condition. Any information provided as part of discussions with a healthcare professional should be age-appropriate and meet the person's accessibility needs. Family members and carers should be provided with information as needed.

Equality and diversity considerations

Information provided as part of discussions with a healthcare professional should be age-appropriate and meet the person's accessibility needs.