Myeloma Diagnosis (England) - June 2021 - Myeloma UK Policy Position ...
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Policy Position Paper Myeloma Diagnosis (England) June 2021
Contents
June 2021 • Myeloma Diagnosis (England)
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
What are the barriers to a timely diagnosis? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
What is the impact of a delayed diagnosis on myeloma patients? . . . . . . . . . . . . . . . . . . . . . . 5
Will current policy initiatives in England help address delayed diagnosis in myeloma? . . 6
1. LTP ambition to diagnose 75% of cancers at stages one or two by 2028 . . . . . . . . . . 6
2. Improving GP awareness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
3. Implementation of Rapid Diagnostic Centres (RDCs) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
4. From Long Term Plan to COVID-19 Cancer Services Recovery Plan . . . . . . . . . . . . . . . . 8
A new future for myeloma diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
What Myeloma UK is doing to help diagnose myeloma earlier . . . . . . . . . . . . . . . . . . . . . . . . . 10
Advocating for best care for myeloma patients in the NHS Long
Term Plan and Cancer Services Recovery Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Carrying out research into the negative health impacts of delayed diagnosis . . . . . . . 10
Myeloma UK Early Diagnosis Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Establishing an Early Diagnosis Research Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Our vision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
We need new metrics and measures of progress to drive
improvement in myeloma and other blood cancers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Development of Rapid Diagnostic Centres must address barriers
to diagnosis in myeloma and other blood cancers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Policy Position Paper
We need better awareness and support for GPs to accurately
suspect, test and refer patients with suspected myeloma . . . . . . . . . . . . . . . . . . . . . . . . . . 11
We need scientific and technological developments to influence
change in early diagnostics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
2Introduction
June 2021 • Myeloma Diagnosis (England)
Myeloma is a rare blood cancer with non-specific symptoms. There are two
characteristics; rarity and “vague symptoms” which contribute to myeloma patients
experiencing some of the longest delays in diagnosis of all cancer patients.1
This position paper outlines the extent of the problem and the main barriers to achieving
timely diagnosis. It sets out Myeloma UK’s activity in diagnosis and our vision
for improving myeloma diagnosis. The target audience is decision makers in the UK
Government, NHS England, elected members and other charities.
The current myeloma diagnosis position shows:
• The median time to diagnosis (first symptom to diagnosis) is 163 days2
• 31% of myeloma patients are diagnosed by an emergency route3
• 50% of myeloma patients wait over five months before getting the right diagnosis2
• 34% of myeloma patients visit their GP at least three times before getting a diagnosis4
The main policy driver for improvement in cancer care in England has been the Long
Term Plan (LTP)5, published by NHS England in 2019.
This paper is also written in the context of the COVID-19 pandemic and, while there is
no published data on the diagnosis of myeloma since March 2020 when the COVID-19
pandemic began, there are national concerns about delays in cancer diagnosis. This
paper considers whether measures in the LTP, which remain in place as part of COVID-19
recovery, are likely to improve diagnosis in myeloma.
Policy Position Paper
3What are the barriers
June 2021 • Myeloma Diagnosis (England)
to a timely diagnosis?
Barriers to timely diagnosis in myeloma are long-standing and complex, and can
be found in primary and secondary care and within diagnostic laboratory services.
• Presentation with vague, non-specific symptoms such as: pain, fatigue, easily broken
bones and recurring infections6
• Myeloma is rarely seen in a primary care setting and is therefore unfamiliar to a GP.
The average GP sees one new myeloma patient every 8–10 years7
• Myeloma has associated comorbidities8 which could indicate a number of conditions
and lead to an incorrect referral within secondary care
• Lack of consistency in laboratory reporting making it difficult for GPs to interpret
test results
• Patients’ hesitancy to visit their GP with general symptoms or which they may associate
with ageing or other, less serious conditions
The language used about diagnosis in rare disease highlights a culture which accepts
that myeloma patients will have a poorer diagnosis experience than patients with more
common solid tumour cancers.
Policy Position Paper
4What is the impact of a delayed
June 2021 • Myeloma Diagnosis (England)
diagnosis on myeloma patients?
Delays in diagnosis have a significant negative impact on patients’ survival and quality
of life.
• Delayed diagnosis can lead to emergency presentation which is associated with
advanced disease and poor survival9 – 38% of myeloma patients diagnosed via the
emergency route die within the first 12 months after diagnosis,2 compared to 12%
diagnosed via GP referral
• Presenting as an emergency means a higher likelihood of two or more serious
complications caused by myeloma, which can reduce patients’ quality of life. These
include; vertebral fractures resulting in surgery and delay in starting myeloma treatment,
renal impairment which may result in lifelong dialysis, anaemia or bone pain. (These
complications are known as CRAB features6; elevated Calcium, Renal failure, Anaemia,
Bone lesions.)
Policy Position Paper
5Will current policy initiatives
June 2021 • Myeloma Diagnosis (England)
in England help address
delayed diagnosis in myeloma?
1. LTP ambition to diagnose 75% of cancers
at stages one or two by 2028
In 2019 the LTP made earlier diagnosis of cancer a priority, describing it as “one of the
biggest actions the NHS can take to improve cancer survival.” The main LTP target
for improving diagnosis, and therefore cancer survival, is that 75% of cancers should
be diagnosed at stages one or two by 2028.5
A staging system is used to classify the progression of myeloma.10 However, the
significance of staging in myeloma treatment and its link to survival differs from solid
tumours. The stage at which a myeloma patient is diagnosed does influence outcomes
and treatment, but whether a patient responds well to key “backbone” treatments in
myeloma also has a significant bearing on patient outcomes.
Therefore, whilst earlier staging is important, the impact of delayed diagnosis is often
experienced by patients in reduced quality of life, rather than overall survival. By focusing
solely on the link between staging and survival outcomes, the metrics in the LTP
designed to drive improvement in cancer diagnosis are not a good fit for myeloma.i
In addition, the biology and progression of myeloma does not fit the “top down” data
capture model used by the NHS in England. The discussion of cases at Multi-Disciplinary
Meetings and the Tumour, Nodes, Metastases recorded for the Cancer Registry does not
match the management and progression of myeloma.
This means that myeloma is effectively excluded from the main national policy
mechanism to improve diagnosis in England, with attention and effort focused largely
on common solid tumour cancers; despite the fact that diagnosis performance in these Policy Position Paper
cancers is often far better than in myeloma.
2. Improving GP awareness
The LTP committed to “ensure that all GPs used the latest evidence-based guidance
from NICE to identify those at risk of cancer.” NICE’s Suspected cancer: Recognition
and Referral guideline (NG12) published in 2015 outlines symptoms caused by cancer,
suitable follow-up investigations and appropriate specialists for referral.
i NHS England will only report on performance against the 75% goal for cancers which reach the threshold of
completeness in staging data collection. Currently myeloma staging data does not meet this threshold.
6Without better support for GPs, the NICE guideline will not help to improve delayed
June 2021 • Myeloma Diagnosis (England)
diagnosis in myeloma.
Whilst knowledge and awareness of myeloma among GPs is important, the rarity
of myeloma means that this must be complemented by a fundamental change
to diagnosis pathways.
GPs must be better supported in dealing with the vague, non-specific symptoms of the
disease, and need the knowledge, opportunity and resources to request the right
laboratory tests and interpret them correctly.
3. Implementation of Rapid Diagnostic Centres (RDCs)
The LTP specifies that RDCs will “in time, play a role in the diagnosis of all patients
with cancer, including self-referral for people with red-flag symptoms.” The need for a
fundamental shift in diagnosis pathways for rare cancers with non-specific symptoms
was behind the establishment of RDCs. The RDC model builds on a pilot of 10
Multidisciplinary Diagnostic Centres (MDC) in 2018 to deliver a new pathway for patients
with vague but concerning symptoms to receive diagnostic tests, designed to rule out
cancer more quickly.
An evaluation of the first five MDC pilots in 2020 found that 13% of cancer cases
diagnosed were blood cancers (n=30).11 In comparison, 9% of all cancer cases
diagnosed in 2016 were a type of blood cancer.12 This difference demonstrates the RDC
model’s potential for blood cancers. A recent evaluation of an RDC pilot in Neath Port
Talbot Hospital, Wales, found that the average waiting time for diagnosis was reduced
from 84.2 days in standard care, to 5.9 days if the RDC made the diagnosis.13 Where
further tests were needed, the time for diagnosis was still reduced to 40.8 days when
investigations were arranged by the RDC.
Early evidence suggests that RDCs do have potential to improve diagnosis in vague
symptom cancers, identifying blood cancers like myeloma and speeding up the
time to diagnosis. However, it is not yet clear whether RDCs will enable cancers
to be diagnosed earlier, in addition to providing a faster pathway.
Policy Position Paper
Under the LTP, RDCs were to be rolled out across Cancer Alliances in 2019/20. This
commitment was impacted by COVID-19 but the implementation of RDCs remains a key
goal for the NHS in England. Following the COVID-19 pause in development, in January
2021 there were 72 live RDCs, with another 55 in development.14 Between May 2020
and January 2021, RDCs diagnosed 531 cancers with a conversion rate of 6%.14 This is
double the predicted value for cancer diagnosis by urgent investigation.15
It is too early in the development and rollout of this new model to know what the
impact of RDCs will be on diagnostic delays in myeloma. The MDC pilots and RDC pilot
modelling show promise. The benefit for myeloma patients will be realised through RDC
eligibility criteria, which includes vague symptoms and prompt access to diagnostic
tests. We are hopeful this is an important step in recognising that fundamental pathway
reform is needed.
74. From Long Term Plan to COVID-19
June 2021 • Myeloma Diagnosis (England)
Cancer Services Recovery Plan
The coronavirus pandemic has had a significant impact on cancer patient care,
particularly in diagnosis. We have seen a pause in plans arising from the LTP, but coming
out of the pandemic, key commitments remain in place and are set out in the Cancer
Services Recovery Plan16 developed by the Cancer Recovery Taskforce.
The Cancer Services Recovery Plan commits to:
• restoring demand to at least pre-pandemic levels
• taking immediate steps to reduce the number of people waiting for diagnostics
and/or treatment
• ensuring sufficient capacity to manage future increased demand
Although we do not yet understand the full impact of COVID-19 on delayed diagnosis
in myeloma, Cancer Research UK reported that urgent referrals for diagnostic tests
for suspected cancers dropped by 75% in England.17 This is due to a combination
of people not coming forward to their GP and GPs not referring to secondary care.
UCL and DATA-CAN also reported that there has been a 70% decrease in urgent
referrals from GPs for people with suspected cancers.18 We expect myeloma patients
to be included in both of these datasets and will see an increase in the number
of patients diagnosed late with long-term negative health impacts.
It is essential that the Cancer Services Recovery Plan ambitions go beyond getting back
to the pre-pandemic “state of play” and ensures that measures to drive improvement
are prioritised.
Policy Position Paper
8A new future for myeloma diagnosis
June 2021 • Myeloma Diagnosis (England)
In addition to influencing the current system to deliver positive change, there needs
to be research and investment into new diagnostic models and detection techniques
for myeloma. We have seen recent innovation in research which has been filtered
through to routine standard of care. The risk for myeloma is that, as a rare cancer
with smaller numbers, it does not feature in the inception and any subsequent roll-out
of new programmes.
We have seen the 100,000 Genome Project and establishment of Genomics England,
leading to the launch of the Genomic Test Directory in 2018. As this programme
continues to develop with stratified medicine and personalised treatment becoming
routine standard of care, research investment must be made to include myeloma
treatment to ensure patients get effective treatments and avoid unnecessary
side effects.
The Galleri blood test developed by GRAIL which can detect early stage cancers by
checking for molecular changes is an example of the kind of scientific development
which could have a significant impact on diagnosis in myeloma. Myeloma is included
in the trial cohort and we look forward to this rolling out during 2021.
There is potential to research precursor conditions as all myeloma patients have the
pre-existing condition MGUS (monoclonal gammopathy of uncertain significance) prior
to developing myeloma. While all myeloma patients will have had MGUS, only around
one percent of people with MGUS will go on to develop myeloma. More research is
needed to understand the development of MGUS to myeloma in some patients.
Policy Position Paper
9What Myeloma UK is doing to help
June 2021 • Myeloma Diagnosis (England)
diagnose myeloma earlier
Advocating for best care for myeloma patients in the
NHS Long Term Plan and Cancer Services Recovery Plan
We advocate for positive change in care by engaging with decision makers like the
NHS England Cancer Programme team and members of the Westminster All Party
Parliamentary Group (APPG) on Blood Cancers. We work with charity partners in
coalitions such as the Blood Cancer Alliance (BCA), Cancer52 and One Cancer Voice
to amplify the voice of myeloma patients in diagnosis policy. Through both the BCA
and Cancer52, we have contributed to the development of the Cancer Services Recovery
Plan. We have been supported in this work by the evidence we gathered in our Patient
and Family COVID-19 surveys.
Carrying out research into the negative
health impacts of delayed diagnosis
We will commission a report to better understand the negative health impacts
and reduced quality of life which patients can experience as a result of delayed
diagnosis. We will use this to ensure that policy initiatives and performance measures
to improve diagnosis give due weight to quality of life alongside survival outcomes.
Myeloma UK Early Diagnosis Programme
Under our Early Diagnosis Programme we are working with leading myeloma clinicians
and primary care experts to:
• investigate the causes of delayed diagnosis
• explore early markers of myeloma and the role of MGUS Policy Position Paper
• develop and promote educational resources for GPs including diagnostic tools and online
learning modules
• develop laboratory best practice guidelines and resources for clinical scientists
• identify key stakeholders to support this work
Establishing an Early Diagnosis Research Programme
We will invest £500k to establish an Early Diagnosis Research Programme which aims
to focus research in myeloma diagnosis. We aim to engage with both myeloma and early
diagnosis researchers.
10Our vision
June 2021 • Myeloma Diagnosis (England)
Myeloma patients deserve equality with all other cancer patients in relation to receiving
a timely diagnosis. Achieving this will require: the development of meaningful
performance metrics, investment in better data capture and reporting, and changes
to the diagnosis pathway and research into new diagnostic models and technologies.
We need new metrics and measures of progress to drive
improvement in myeloma and other blood cancers
We ask NHS England and Public Health England to develop new measures to reduce
diagnostic delays and that myeloma is included in future policy ambitions.
New measures should include a reduction in numbers of diagnoses via an emergency
route and numbers of GP visits before referral to secondary care.
New metrics must include the quality of life impacts of delayed diagnosis in incurable
cancers. Data systems must be developed so that this data is captured.
Development of Rapid Diagnostic Centres must address
barriers to diagnosis in myeloma and other blood cancers
RDC outputs need to be transparent and accessible to ensure they are meeting the
needs of myeloma and other blood cancer patients. This should include capturing
specific myeloma data from this new pathway.
Any RDC review should look at enabling patients to self-refer for diagnostic tests at RDCs
and how this is implemented.
We need better awareness and support for GPs to accurately Policy Position Paper
suspect, test and refer patients with suspected myeloma
It is vital that GPs are better supported in ordering the right diagnostic tests
and interpreting results. Standardised guidance for laboratory staff and services should
be developed to ensure that best practice is followed when engaging with GPs on
myeloma diagnostic tests.
We need scientific and technological developments
to influence change in early diagnostics
We need investment in research into the progression of known precursor conditions
and a focus on blood cancers in continued development of initiatives like the Galleri test
and expansion of the NHS Genomic Medicine Service.
11Conclusion
June 2021 • Myeloma Diagnosis (England)
Diagnosis in myeloma remains poor and this has a significant impact on patients’
survival and quality of life. Although we are pleased to see ambitions for improvements
in cancer diagnosis in the NHS Long Term Plan and in plans for COVID-19 recovery,
we need more evidence on the performance of myeloma compared to common solid
tumours. We currently lack policy recommendations to improve myeloma diagnosis
in England however this paper outlines the changes we believe could help diagnose
myeloma earlier. We need key decision makers in the Government, NHS and research
communities to work together to bring about change in early diagnosis and improve
outcomes for myeloma patients.
Policy Position Paper
12References
June 2021 • Myeloma Diagnosis (England)
1. Howell DA, Smith AG, Jack A et al. (2013) Time-to-diagnosis and symptoms
of myeloma, lymphomas and leukaemias: a report from the Haematological
Malignancy Research Network. BMC Haematol. 13:9
2. Koshiaris C, Oke J, Abel L, Nicholson BD, Ramasamy K, Van den Bruel A.
(2018) Quantifying intervals to diagnosis in myeloma: a systematic review
and meta-analysis. BMJ Open. 8(6):e019758. doi: 10.1136/bmjopen-2017-019758.
3. National Cancer Registration and Analysis Service, Routes to Diagnosis 2006-2016
workbook (a) http://www.ncin.org.uk/publications/routes_to_diagnosis
4. Myeloma UK (2020) National Cancer Patient Experience Survey 2018: Seeing a GP,
available at: https://www.myeloma.org.uk/wp-content/uploads/2020/11/Myel
oma-UK-National-Cancer-Patient-Experience-2018-Seeing-a-GP.pdf
5. NHS England (2019) The NHS Long Term Plan, available at:
https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-p
lan-version-1.2.pdf
6. International Myeloma Working Group (IMWG) criteria for the diagnosis of multiple
myeloma, available at: https://www.myeloma.org/international-myeloma-working-gr
oup-imwg-criteria-diagnosis-multiple-myeloma
7. Rubin G, Berendsen A, Crawford SM et al. (2015) The expanding role
of primary care in cancer control. Lancet Oncol. 16(12):1231-72.
doi: 10.1016/S1470-2045(15)00205-3. PMID: 26431866.
8. Kleber et al. Comorbidity as a prognostic variable in multiple myeloma: comparative
evaluation of common comorbidity scores and use of a novel MM-comorbidity score
(2011) Blood Cancer J. 1(9):e35. doi: 10.1038/bcj.2011.34. Epub 2011 Sep 16.
PMID: 22829196; PMCID: PMC3255252. Policy Position Paper
9. Howell D, Smith A, Appleton S et al. (2017) Multiple myeloma: routes to diagnosis,
clinical characteristics and survival – findings from a UK population-based study.
Br J Haematol. 177(1): 67-71
10. International Staging System (ISS) and Revised ISS (R-ISS), available at:
https://www.myeloma.org/international-staging-system-iss-reivised-iss-r-iss
11. Chapman, D. et al. (2020) First results from five multidisciplinary diagnostic centre
(MDC) projects for non-specific but concerning symptoms, possibly indicative
of cancer. British Journal of Cancer, 123:722-729.
1312. NCRAS, Routes to Diagnosis yearbook, available at:
June 2021 • Myeloma Diagnosis (England)
https://www.cancerresearchuk.org/health-professional/cancer-statistics/
incidence/commoncancerscompared#heading-Zero
13. Sewell et al. (2020) Rapid cancer diagnosis for patients with vague symptoms:
a cost-effectiveness study, Br J Gen Pract. 70(692): e186–e192. Published online
2020 Jan 14. doi: 10.3399/bjgp20X708077
14. NHS Cancer Programme, Monthly RDC Progress Update, March 2021, available at:
https://mcusercontent.com/68b588bc5847cde662b4ac613/files/
9cc6abc9-6426-429f-a93a-3c7188d65870/NHS_Cancer_Programme.pdf
15. National Institute for Health and Care Excellence. Suspected cancer: recognition
and referral. NICE guideline (NG12, 2015).
16. NHS Cancer Programme (2020) Cancer services recovery plan, available at:
https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/12/
C0821-COVID-19-Cancer-services-recovery-plan-14-December-2020.pdf
17. House of Commons Health and Social Care Committee (2020) Delivering core NHS
and care services during the pandemic and beyond, available at:
https://committees.parliament.uk/publications/2793/documents/27577/default
18. Lai AG et al. (2020) Estimated impact of the COVID-19 pandemic on cancer services
and excess 1-year mortality in people with cancer and multimorbidity: near real-time
data on cancer care, cancer deaths and a population-based cohort study. BMJ Open.
10:e043828. doi:10.1136/bmjopen-2020-043828
Policy Position Paper
Myeloma UK
22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG
0131 557 3332
myelomauk@myeloma.org.uk
Registered Charity No: SC026116
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