Support Measure | Benefit for Patient and Caregiver | Outcome Measure |
---|---|---|
Counseling services | Better understand disease course Manage expectations Early introduction to quality palliative care | Defined acceptable outcome for the patient and their families |
Adjunctive treatment | Alleviate somatic symptoms, including sleep disturbances and gastrointestinal symptoms | Reduced physical burden Reduced adverse events with predictable management Reduced nonattendance at school and work Cost savings |
Psychiatric support | Manage/support emotional stresses, anxiety, and depression | Less impact on social services Allow caregivers to effectively perform duties |
Interdisciplinary clinical network | Promotes integration and coordination of care Streamlines hospital visits and investigations Promotes early engagement with support organizations Actively monitors QoL of patients and caregivers | Reduced caregiver stress Improved productivity/time management |
Support network/parent groups and patient associations | Relief from physical tasks Sharing of experiences Exchange of information on support services | Reduced emotional and physical burden |
Financial assistance | Supports any potential loss of income Facilitates patient travel and home modifications | Reduced emotional, social, and professional burden |
Provision of respite and palliative care | Allows caregivers time to themselves Allows time for planning and assessment of the value of continual and quality care | Reduced emotional and physical burden |