Paediatric Lymphoedema Service Provision (PLOS) Survey

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* 1. Please describe your service type and location

Public

Private

Both Public and Private

Metropolitan

Rural

Other (please specify). Please describe the distance from the capital city, catchment area and population of your catchment

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* 2. How long does it take your patients to travel to your clinic? (For each time frame please indicate a rough percentage it affects)

	0 - 20%	20 -40%	40 - 60%	60 - 80%	80 - 100%
< 1 hour	< 1 hour 0 - 20%	< 1 hour 20 -40%	< 1 hour 40 - 60%	< 1 hour 60 - 80%	< 1 hour 80 - 100%
1 - 3 hours	1 - 3 hours 0 - 20%	1 - 3 hours 20 -40%	1 - 3 hours 40 - 60%	1 - 3 hours 60 - 80%	1 - 3 hours 80 - 100%
3-5 hours	3-5 hours 0 - 20%	3-5 hours 20 -40%	3-5 hours 40 - 60%	3-5 hours 60 - 80%	3-5 hours 80 - 100%
> 5 hours	> 5 hours 0 - 20%	> 5 hours 20 -40%	> 5 hours 40 - 60%	> 5 hours 60 - 80%	> 5 hours 80 - 100%

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* 3. Please describe your lymphoedema service staffing profile. In the other box please add FTE amount/ number of hours/ week

Medical

Nursing

Physiotherapist

Occupational Therapist

Other (E.g. Social work, psychology, nurse, geneticist)

Other. Please specify the FTE/ number of hours/ week for the staff you ticked above AND what level training undertaken (i.e. Level 1 or 2 Lymhpoedema Trained)

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* 4. Please describe the type of service offered

Assessment Clinic

Education Session

Intervention Session

Other (please specify below)

Please outline the number of staff and hours dedicated to each of the above

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* 5. Where do you receive referrals from?

Internally via Hospital staff

Internally via medical officer only

Other (please specify)

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* 6. Approximately how many new paediatric referrals do you receive of the following: Primary lymphoedema, secondary lymphoedema, lipoedema, other?

	1-2 per month	1-2 per 3 months	1-2 per 6 months	1-2 per year
Paediatric primary lymphoedema	Paediatric primary lymphoedema 1-2 per month	Paediatric primary lymphoedema 1-2 per 3 months	Paediatric primary lymphoedema 1-2 per 6 months	Paediatric primary lymphoedema 1-2 per year	Paediatric primary lymphoedema
Paediatric secondary lymphoedema	Paediatric secondary lymphoedema 1-2 per month	Paediatric secondary lymphoedema 1-2 per 3 months	Paediatric secondary lymphoedema 1-2 per 6 months	Paediatric secondary lymphoedema 1-2 per year	Paediatric secondary lymphoedema
Paediatric lipoedema	Paediatric lipoedema 1-2 per month	Paediatric lipoedema 1-2 per 3 months	Paediatric lipoedema 1-2 per 6 months	Paediatric lipoedema 1-2 per year	Paediatric lipoedema
Other (E.g. vascular anomalies/ skin conditions with related oedema)	Other (E.g. vascular anomalies/ skin conditions with related oedema) 1-2 per month	Other (E.g. vascular anomalies/ skin conditions with related oedema) 1-2 per 3 months	Other (E.g. vascular anomalies/ skin conditions with related oedema) 1-2 per 6 months	Other (E.g. vascular anomalies/ skin conditions with related oedema) 1-2 per year	Other (E.g. vascular anomalies/ skin conditions with related oedema)

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* 7. Of those with primary lymphoedema, approximately how many in each age group are referred / are you treating/ do you have on your lists?

	1-3	4-6	7-10	11-15	> 15
0-2 years	0-2 years 1-3	0-2 years 4-6	0-2 years 7-10	0-2 years 11-15	0-2 years > 15
3-5 years	3-5 years 1-3	3-5 years 4-6	3-5 years 7-10	3-5 years 11-15	3-5 years > 15
5-10 years	5-10 years 1-3	5-10 years 4-6	5-10 years 7-10	5-10 years 11-15	5-10 years > 15
11-18 years	11-18 years 1-3	11-18 years 4-6	11-18 years 7-10	11-18 years 11-15	11-18 years > 15
18-25 years	18-25 years 1-3	18-25 years 4-6	18-25 years 7-10	18-25 years 11-15	18-25 years > 15
Adult	Adult 1-3	Adult 4-6	Adult 7-10	Adult 11-15	Adult > 15

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* 8. What lymphoedema assessment and management do you provide?

Lymphoscintigraphy

ICG Fluoroscopy

Ultrasound

Manual lymphatic drainage

Compression bandaging

Compression garments

Education

Skin Care

Exercises

Self-management

Home visits

Inpatient Management

Other: If you checked inpatient management, what do you offer?

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* 9. What conditions causing swelling/ lymphoedema in children do you see for assessment and management?

Disturbed growth and/ or cutaneous/ vascular anomalies (e.g. AKT, PIK3, proteus syndrome, WILD syndrome)

Syndromes (eg Turners/ Noonans/ Klippel Trenaunay Weber/ Phelan McDermid/ Prada Willi / MCMLR, MCM, Fabry disease, CHARGE syndrome)

Multi-segmental lymphatic dysplasia with systemic involvement (eg MLDSI, GLD Hennekam syndrome)

Congenital multi-segmental lymphoedema

Congenital onset primary lymphoedema (Milroy disease, Milroy-like lymphoedema)

Late onset primary lymphoedema (Lymphoedema distichiasis syndrome, Meige disease, Emberger syndrome)

Secondary lymphoedema

Other (please specify) any not listed above

Paediatric Lymphoedema Service Provision (PLOS) Survey

Question Title

* 1. Please describe your service type and location

Question Title

* 2. How long does it take your patients to travel to your clinic? (For each time frame please indicate a rough percentage it affects)

Question Title

* 3. Please describe your lymphoedema service staffing profile. In the other box please add FTE amount/ number of hours/ week

Question Title

* 4. Please describe the type of service offered

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* 5. Where do you receive referrals from?

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* 6. Approximately how many new paediatric referrals do you receive of the following: Primary lymphoedema, secondary lymphoedema, lipoedema, other?

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* 7. Of those with primary lymphoedema, approximately how many in each age group are referred / are you treating/ do you have on your lists?

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* 8. What lymphoedema assessment and management do you provide?

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* 9. What conditions causing swelling/ lymphoedema in children do you see for assessment and management?

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* 10. What would you like to offer but currently are not?