Non-malignant conditions, including but not limited to
- Cardiac conditions, including:
- cardiac disease, congenital
- cardiomyopathy, acquired
- cardiomyopathy, familial
- Congenital health problems, including:
- birth complications:
- genetic conditions, including:
- prematurity-related
- Dermatological conditions:
- Gastrointestinal conditions, including:
- liver failure
- refractory feeding intolerance, generally associated with another presentation, including:
- severe neurological impairment
- short gut syndrome
- Immunological conditions, including:
- immunodeficiencies being considered for or treated with bone marrow transplant, including:
- severe combined immunodeficiency (SCID)
- Metabolic conditions, including:
- mucopolysaccharidoses
- Pompe disease
- Neurological conditions, including:
- brain injury
- neurodegenerative disorders:
- Batten disease
- Duchenne muscular dystrophy
- leukodystrophy
- spinal muscular atrophy
- static encephalopathies:
- Renal conditions, including:
- bilateral renal agenesis
- renal disease, end stage
- Respiratory conditions, including:
- cystic fibrosis:
- timing of consideration for lung transplant
Malignant conditions, including but not limited to
- Brain tumours, including:
- diffuse midline glioma
- glioblastoma multiforme
- Haematological malignancies, including:
- patients with haematological malignancy entering transplant with high disease or comorbidity burden, such as high-risk transplants
- relapsed / refractory leukemia / lymphoma, and high-risk leukemias
- second bone marrow transplant
- Relapsed resistant solid tumours with poor prognosis
For each presentation and condition, Advanced Trainees will know how to:
Synthesise
- recognise the clinical presentation
- identify relevant epidemiology, prevalence, pathophysiology, and clinical science
- take a comprehensive clinical history
- conduct an appropriate examination
- establish a differential diagnosis
- plan and arrange appropriate investigations
- consider the impact of illness and disease on patients and their quality of life when developing a management plan
Manage
- provide evidence-based management
- prescribe therapies tailored to patients’ needs and conditions
- recognise potential complications of disease and its management, and initiate preventative strategies
- involve multidisciplinary teams
Consider other factors
- identify individual and social factors and the impact of these on diagnosis and management
For the above conditions
- Disease- and patient-specific factors in prescribing potential therapies:
- organ dysfunction
- susceptibility to medication side effects
- Epidemiology
- Expected trajectory / trajectories of conditions
- Intent of potential therapies, including:
- attempt at cure
- life prolongation
- symptom management
- Pathophysiology
Clinical assessment tools
- Symptom assessment scales for verbal and nonverbal patients, including:
- face, legs, activity, cry, and consolability (FLACC) scale
- numerical rating
- Wong–Baker faces
- Tailored to pathophysiology, prognosis and goals of care
Investigations
- Blood tests
- Imaging
- Tailored to pathophysiology, prognosis, and goals of care
Disease- or syndrome-specific procedures (understanding of the indications, benefits, and burdens of disease-related procedures, including the following)
- Cardiac:
- disease
- surgery for congenital cardiac disease
- ventricular assist device insertion
- Gastrointestinal:
- nasogastric insertion
- percutaneous gastrostomy
- Neurological:
- baclofen pump insertion
- cerebrospinal fluid diversion
- palliative radiotherapy
- Orthopaedic
- Renal:
- renal replacement therapy
- Respiratory:
- non-invasive ventilation
- oxygen therapy
- tracheostomy
- video-assisted thoracic surgery (VATS) and pleurodesis in the setting of recurrent malignant pleural effusions
- Surgical interventions:
- fracture fixation in the setting of osteopenia of disability
- scoliosis surgery in the setting of severe neurodisability
Clinical considerations
- Anticipatory prescribing
- Complex family discussions, encompassing priorities and goals of care of patients, their families, whānau, and/or carers
- Investigations and monitoring in the context of illness stage and goals of care
- Options for place of care
- Patients’ and their families’, whānau, and/or carers’ preferences for communication and degree of:
- information shared
- involvement in decision making
- Uncertainty in prognosis and trajectory
- Understanding and having treatment strategies for the psychosocial effects and psychosocial drivers of symptoms
Ethical and legal issues
- Advance care planning
- Capacity assessment in the young person
- Disagreement within families about treatment decisions
- Disagreement between families and clinicians about treatment decisions
- Nutrition and hydration in the context of illness stage and goals of care
- Withdrawal and/or withholding of life-sustaining treatment
Procedures
- The understanding and ability to communicate the relative risks and burdens to children and families
- Informed consent
Self-care in palliative care
- Personal impact of dealing with incurable illness, death, and dying
- Physician burnout
