The feasibility of collecting a minimum dataset (MDS) for

lymphoedema

Mary WoodsNurse Consultant Lymphoedema,

The Royal Marsden Hospital

Eunice JeffsEB Research Nurse, St Thomas’ Hospital, London

Mary Woods 2-20 1

Declaration of interest

We are grateful for a grant from Macmillan Cancer Support.

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What is a Community of Practice (CoP)?

A group of active practitioners, performing the same job with a common interest in a particular area.

The group meet to share information and learn from each other so that they develop personally and professionally.

Members contribute collective knowledge to discuss and

influence specific problems.

A CoP can evolve naturally or it can be created

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3

Pan – London LymphoedemaCommunity of Practice

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Pan –London LymphoedemaCommunity of Practice

First met in July 2018

Meet three times a year

Facilitated by the

Transforming Cancer Service

Team

Supported by Macmillan

Cancer Support

Our purpose:

To improve our

patients outcomes

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Background to the project

National Lymphoedema

Partnership (NLP)

• A strategic forum for those supporting patients with lymphoedema.

• A platform to work towards improving patient outcomes, service provision and availability of standardised care within the UK

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Early objective of the NLP

To stimulate the gathering of consistent data about

patients accessing lymphoedema services

To describe the picture of who is receiving

care

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Minimum Data Set

(MDS)

Provide information on the types of patients

Demonstrate workload and capacity

Provide a baseline to benchmark against other services

The Minimum Data Set

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• Anonymised data from all new referrals for a one month period.

Collection of data

• A short survey about using the MDS tool

Practitioners survey

Aim of this project: To report on the feasibility of collecting a Minimum Data Set from pan-London lymphoedema services

Feasibility of the tool

Feasibility v Pilot study

Feasibility:

≥67% of services provide ≥67% of possible data

Feasibility

Can this be done?

Pilot study

Does this need to change?

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Demographic

Cause of oedema;

Complexity

Data collected

Results

• Seven out of 15 services (47%) participated in the project and provided data

• Five out of the seven services provided at least 2/3 possible data

• Data was provided for a total of 256 patients with lymphoedema

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Data consistently recorded

13

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43% patients had non-

cancer related oedema

36% patients were

classified obese

59% patients were fully

mobile

Median age was 65 years

74% patients were female

Minimum Data Set

Results – data consistently missed by 2 or more services

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Demographic data

• 3/7 services did not record the body part where swelling was present.

• 4/7 services did not record patients actual BMI

Causes of oedema

• 3/7 services did not record whether patients were receiving end of life care or not

Complexity of the oedema

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Consistently recorded by 6/7 services (89.9%)

78% patients had ISL Grade 1 or 2ISL Staging

Consistently recorded by 6/7 services (99.2%)

50% patients had oedema < 12 month duration

Duration of oedema

Arm / leg swelling recorded by all services

Recording of proximal /distal / truncal swelling less consistent.

Site of oedema

Cellulitis and wound data recorded

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Cellulitis: Consistently recorded data in three areas by 6/7 services.

(Ever, frequency, past year, hospitalisation)

Wounds: 5/7 services recorded data.

(Present, related to oedema, site and type

Service data collection: time required

None Extra time

Data collection for MDS

2 54 required 1-2 mins per patient

1 service required >2 mins pp

Collation of data for MDS

1 6

3 services took <30 minutes

1 service took 30-60 minutes

2 services took >60 minutes

Data collection & collation methodPaper

recordsComputer

recordsLymphoedema

database

Service data collection

2 2 3

Collation of data for MDS project

Manual Manual Electronic

Results: summary

Participated Did not participate

Services 7 8

Patient population256

(Range 13-109 patients)Unknown

≥67% data for feasibility

5 /7 services -

Willing to participatein future MDS project

7 1

Discussion

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Data Collection:

Much is routinely recorded

Precise reporting is essential

Data Collation:

Paper and electronic recording was used

Analysis of raw data was challenging

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Minimum Data Set

(MDS)

Provide information on the types of patients

Demonstrate workload and capacity

Provide a baseline to benchmark against other services

The Minimum Data Set

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Data from a range of different services

The tool was quick and easy to use

Feasibility was demonstrated

Two versions of data collection were used

Incomplete data collection and recording

Stre

ngt

hs

We

aknesse

s

Discussion

Next steps

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Repeat in 6-12 months

Consider whether additional data could be added

Ensure the electronic version of the tool is used and utilise a data collection spreadsheet

Conclusion

Minimum data set

Can demonstrate caseload and

capacity

Could be matched against the BLS tariff to

demonstrate cost

Could assist in campaigning for

better service provision

Could assist in planning

treatment pathways based on

complexity

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Acknowledgements

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Lymphoedema Services participating in the project included:

AccelerateCIC

Croydon (Macmillan Centre)

Enfield Community Lymphoedema Service

Guy’s and St Thomas’s Hospital

The Royal Marsden Hospital

The Whittington Hospital

University College Hospital