4.5.1 Supportive care
See validated screening tools mentioned in Principle 4 ‘Supportive care’. A number of specific challenges and needs may arise for patients, families and carers at this time: assistance for dealing with emotional and psychological issues, including body image concerns, fatigue, quitting smoking, traumatic experiences, existential anxiety, treatment phobias, memory and concentration difficulties, anxiety/depression, interpersonal problems…
Read MoreResources
Visit the guides to best cancer care webpage <www.cancercareguides.org.au> for consumer guides. Visit the OCP webpage for the optimal care pathway and instructions on how to import these guides into your GP software. Endorsed by: ALLG <www.allg.org.au> ANZTCT <www.anztct.org.au> Cancer Council <www.cancer.org.au> HSANZ <www.hsanz.org.au> Leukaemia Foundation <www.leukaemia.org.au>
Read MoreSTEP 7: End-of-life care
Palliative care Consider a referral to palliative care. Ensure an advance care directive is in place. Communication The lead clinician’s responsibilities include: being open about the prognosis and discussing palliative care options with the patient establishing transition plans to ensure the patient’s needs and goals are considered in the appropriate environment. Checklist Supportive care needs…
Read MoreSTEP 6: Managing relapsed or refractory disease
MDS is generally incurable, except in patients who have a successful allo-SCT. Many patients will relapse or will progress after initial therapy, have worsening symptoms or transfusion dependence and/ or progress to acute myeloid leukaemia. Detection Most refractory or progressive disease will be detected via routine follow-up or by the patient presenting with symptoms. Treatment…
Read MoreSTEP 5: Care after initial treatment and recovery
Survivors generally need regular, ongoing, long-term follow-up because treatments for MDS are generally not curative. The survivorship care plan may need to be updated to reflect changes in the patient’s clinical status and psychosocial needs. Provide a treatment and follow-up summary to the patient, carer and GP outlining: the diagnosis, tests and treatments received current…
Read MoreSTEP 4: Treatment
All patients should receive supportive therapies, including education, active surveillance and monitoring, transfusions as appropriate and prompt infection control. Some lower risk MDS patients (not on any active interventions) may be suitable for monitoring and surveillance with their GP. The range of disease- specific/directed additional treatment options varies across different risk groups depending on age…
Read MoreSTEP 2: Presentation, initial investigations and referral
The following signs and symptoms should be investigated: persistent tiredness and fatigue weakness shortness of breath with minimal exercise looking pale recurring infections, especially chest infections fevers sore mouth due to mouth ulcers easy bruising purpura – a rash of small red dots tendency to bleed from the nose and gums. The presence of multiple…
Read MoreSTEP 1: Prevention and early detection
Prevention The causes of MDS are not fully understood, and there is currently no clear prevention strategy. Risk factors include: age (occurs mainly in people aged over 60) gender (MDS is more common in males) long-term exposure to environmental/ occupational hazards such as benzene, tobacco smoke, insecticides and other toxins previous chemotherapy (alkylating agents and…
Read MoreMedical colleges and peak organisations invited to provide feedback
Australian Capital Territory Health Allied Health Professions Australia Australian and New Zealand Children’s Haematology/Oncology Group Australia and New Zealand Transplant and Cellular Therapies Australasian Association of Nuclear Medicine Specialists Australasian College of Emergency Medicine Australasian Leukaemia & Lymphoma Group Australian and New Zealand Society of Palliative Care Australian College of Nursing Australian College of Rural…
Read MoreOptimal Care Pathways Steering Committee
Associate Professor Peter Mollee (Chair), Haematologist Princess Alexandra Hospital, Australasian Leukaemia and Lymphoma Group, Associate Professor, University of Queensland Dr Caroline M Bateman, Paediatric Haematologist and Oncologist, Cancer Centre for Children, The Children’s Hospital at Westmead Julia Brancato, Optimal Care Pathways Project Coordinator, Cancer Council Victoria Dr Peter Diamond, Project Secretariat, Leukaemia Foundation Associate Professor…
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