Quality statement 4: End-of-treatment summary plan

Quality statement

Young people and adults who have completed their treatment for non-Hodgkin's lymphoma or myeloma have a discussion about their end-of-treatment summary plan.

Rationale

Discussing the end-of-treatment summary plan with a person who has had treatment supports self-management and awareness of signs or symptoms of disease recurrence. It can also alert people to some of the possible late effects of their treatment and possible long-term psychological and emotional problems, such as depression and anxiety, which can occur after treatment.

Quality measures

Structure

Evidence of local arrangements to ensure that young people and adults who have had treatment for non-Hodgkin's lymphoma or myeloma have a discussion about their end-of-treatment summary plan when they complete their treatment.

Data source: Local data collection.

Process

a) Proportion of young people and adults who have completed their treatment for non-Hodgkin's lymphoma and who have a discussion about their end-of-treatment summary plan.

Numerator – the number in the denominator who have a discussion about their end-of-treatment summary plan.

Denominator – the number of young people and adults who have completed their treatment for non-Hodgkin's lymphoma.

Data source: Local data collection.

b)Proportion of young people and adults who have completed their treatment for myeloma and who have a discussion about their end-of-treatment summary plan.

Numerator – the number in the denominator who have a discussion about their end-of-treatment summary plan.

Denominator – the number of young people and adults who have completed their treatment for myeloma.

Data source: Local data collection.

Outcome

a) Young people and adults with non-Hodgkin's lymphoma or myeloma feel supported to self-manage their condition.

Data source: Local data collection.

b) Early identification of treatment-related morbidity in young people and adults with non-Hodgkin's lymphoma or myeloma.

Data source: Local data collection.

What the quality statement means for different audiences

Service providers (specialist regional centres) ensure that processes are in place for young people and adults with non-Hodgkin's lymphoma or myeloma to discuss their end-of-treatment summary plan with a member of their haemato-oncology multidisciplinary team (MDT).

Healthcare professionals (such as clinical nurse specialists and other members of the haemato-oncology MDT) have a discussion with young people and adults with non-Hodgkin's lymphoma or myeloma about their end-of-treatment summary plan, highlighting personal and general risk factors, including late effects related to their lymphoma subtype, myeloma or its treatment.

Commissioners (clinical commissioning groups) ensure that they commission services in which young people and adults with non-Hodgkin's lymphoma or myeloma discuss their end-of-treatment summary plan with a member of their haemato-oncology MDT.

Young people and adults who have finished their treatment for non-Hodgkin's lymphoma or myeloma discuss their end-of-treatment summary plan with a member of their specialist team. This includes explaining the tests and treatments the person had and whether there may be ongoing side effects or side effects that may appear months or even years after treatment. It also includes how to spot signs that might suggest the cancer is coming back.

Source guidance

Definitions of terms used in this quality statement

Young people and adults

16 years and over.

End-of-treatment summary plan

Includes personal and general risk factors, such as late effects related to lymphoma subtype, myeloma and/or its treatment as follows:

  • heart damage

  • peripheral neuropathy

  • cognitive disorders

  • second cancers

  • infertility

  • endocrine (hormonal) problems

  • bone and joint damage

  • chronic tiredness

  • lifestyle factors – exercise, diet and smoking

  • inability to do day-to-day tasks.

[Adapted from NICE's guideline on non-Hodgkin's lymphoma, full guideline and recommendation 1.11.1]