Cystic Kidney Disease

ADULT

  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • Significant cyst haemorrhage, suspected septicaemia related to cyst infection, suspected rupture of berry aneurysm

    Note: If there is any uncertainty regarding the urgency of referral for an unwell patient, please contact your local Kidney Medicine service for guidance.

  • Main disorders in this category

    • Cystic kidney diseases
    • Autosomal dominant polycystic kidney disease (ADPKD)
    • Autosomal recessive polycystic kidney disease
    • Nephronophthisis (juvenile and adult)
    • Autosomal dominant tubulointerstitial kidney disease (medullary cystic kidney disease)
    • Medullary sponge kidney
    • Associated with multiple malformation syndrome
      • Tuberous sclerosis complex, Lowe's syndrome, Von Hippel-Lindau disease
    • Acquired cystic kidney disease

    Note that Complex cysts (Bosniak type 2 or above) should be referred to urology (where available)

    Patient resources

Minimum Referral Criteria
Category 1
(appointment within 30 calendar days)
  • Cystic kidney disease associated with severe symptoms or complications (e.g. pain, haemorrhage, recurrent infection)
Category 2
(appointment within 90 calendar days)
  • Cystic kidney disease associated with mild to moderate symptoms or complications
  • Cystic kidney disease, in a female patient that is contemplating pregnancy
Category 3
(appointment within 365 calendar days)
  • Asymptomatic cystic kidney disease

Please insert the below information and minimum referral criteria into referral

1. Reason for request Indicate on the referral

  • To establish a diagnosis
  • For treatment or intervention not otherwise accessible to the patient
  • For advice regarding management
  • To engage in an ongoing shared care approach between primary and secondary care
  • Reassurance for GP/second opinion
  • Reassurance for the patient/family
  • For other reason (e.g. rapidly accelerating disease progression)
  • Clinical judgement indicates a referral for specialist review is necessary

2. Essential referral information Referral will be returned without this

  • Presence of comorbid conditions such as hypertension, diabetes or vascular disease
  • Family history of kidney disease
  • List of medications
  • FBC & ELFT results
  • Urine midstream M/C/S (including testing for red cell morphology and casts preferable)
  • Urine albumin creatinine ratio (ACR) or urine protein creatinine ratio (PCR) (ideally early morning sample but a random sample is acceptable)
  • Recent BP results
  • Ultrasound (kidney, ureters & bladder) or alternative kidney imaging results

3. Additional referral information Useful for processing the referral

  • Serial imaging results

4. Request

  • Patient's Demographic Details

    • Full name (including aliases)
    • Date of birth
    • Residential and postal address
    • Telephone contact number/s – home, mobile and alternative
    • Medicare number (where eligible)
    • Name of the parent or caregiver (if appropriate)
    • Preferred language and interpreter requirements
    • Identifies as Aboriginal and/or Torres Strait Islander

    Referring Practitioner Details

    • Full name
    • Full address
    • Contact details – telephone, fax, email
    • Provider number
    • Date of referral
    • Signature

    Relevant clinical information about the condition

    • Presenting symptoms (evolution and duration)
    • Physical findings
    • Details of previous treatment (including systemic and topical medications prescribed) including the course and outcome of the treatment
    • Body mass index (BMI)
    • Details of any associated medical conditions which may affect the condition or its treatment (e.g. diabetes), noting these must be stable and controlled prior to referral
    • Current medications and dosages
    • Drug allergies
    • Alcohol, tobacco and other drugs use

    Reason for request

    • To establish a diagnosis
    • For treatment or intervention
    • For advice and management
    • For specialist to take over management
    • Reassurance for GP/second opinion
    • For a specified test/investigation the GP can't order, or the patient can't afford or access
    • Reassurance for the patient/family
    • For other reason (e.g. rapidly accelerating disease progression)
    • Clinical judgement indicates a referral for specialist review is necessary

    Clinical modifiers

    • Impact on employment
    • Impact on education
    • Impact on home
    • Impact on activities of daily living
    • Impact on ability to care for others
    • Impact on personal frailty or safety
    • Identifies as Aboriginal and/or Torres Strait Islander

    Other relevant information

    • Willingness to have surgery (where surgery is a likely intervention)
    • Choice to be treated as a public or private patient
    • Compensable status (e.g. DVA, Work Cover, Motor Vehicle Insurance, etc.)

  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • Please note that where appropriate and where available, the referral may be streamed to an associated public allied health and/or nursing service.  Access to some specific services may include initial assessment and management by associated public allied health and/or nursing, which may either facilitate or negate the need to see the public medical specialist.

    • A change in patient circumstance (such as condition deteriorating, or becoming pregnant) may affect the urgency categorisation and should be communicated as soon as possible.

    • Please indicate in the referral if the patient is unable to access mandatory tests or investigations as they incur a cost or are unavailable locally.

Last updated: 25 November 2025

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