Quality statement 6: Holistic needs assessment
Quality statement
People diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations have physical, psychological and emotional support needs assessed at key points of the care pathway.
Rationale
The physical, psychological and emotional support needs associated with rare diseases can change over time. They should be assessed during the diagnostic process and reassessed regularly to inform care plans. They can result in signposting to relevant support and referral to additional specialist services.
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.
Structure
Evidence of arrangements to ensure that people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations have physical, psychological and emotional support needs assessed at key points on the care pathway.
Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.
Process
a) The proportion of people diagnosed with a rare disease who had their physical, psychological and emotional support needs assessed when they reached a key point on their care pathway.
Numerator – the number in the denominator who had their physical, psychological and emotional support needs assessed.
Denominator – the number of people diagnosed with a rare disease who have reached a key point on their care pathway.
Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.
b) The proportion of people with a suspected rare disease that remains undiagnosed after diagnostic investigations who had their physical, psychological and emotional support needs assessed when they reached a key point on their care pathway.
Numerator – the number in the denominator who had their physical, psychological and emotional support needs assessed.
Denominator – the number of people with a suspected rare disease that remains undiagnosed after diagnostic investigations who have reached a key point on their care pathway.
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 (such as specialist services) ensure that physical, psychological and emotional support needs are assessed at key points on care pathways for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations.
Healthcare professionals (such as doctors, nurses and allied health professionals) assess physical, psychological and emotional support needs of people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations at key points on their care pathways. They use the results to inform each person's care plan and offer appropriate support.
Commissioners ensure that they commission services that assess physical, psychological and emotional support needs at key points on care pathways for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations.
People diagnosed with a rare disease or with a suspected rare disease that has not yet been formally diagnosed are asked about physical, psychological and emotional support needs at key stages in the diagnosis and management of their condition.
Source guidance
Patient experience in adult NHS services. NICE guideline CG138 (2012, updated 2021), recommendations 1.3.1 and 1.3.4.
Babies, children and young people's experience of healthcare. NICE guideline NG204 (2021), recommendations 1.1.6 and 1.1.7.
Improving outcomes in children and young people with cancer. NICE guideline CSG7 (2005), psychosocial care: page 74, paragraphs 1 to 4.
Definitions of terms used in this quality statement
Key points on the pathway
These include:
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at referral for investigation
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at diagnosis
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transition between children's and adults' services
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during long-term follow up
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during palliative care.
[Adapted from NICE's guideline on improving outcomes in children and young people with cancer, psychosocial care: page 74, paragraph 3]
Equality and diversity considerations
People should be supported to overcome potential difficulties in accessing services, which may result from the person having to travel a long way to attend appointments, or from them having a disability, cognitive difficulties, or financial barriers.