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Table 3 Supportive Measures That Can Mitigate Caregiver Burden

From: Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

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
  1. QoL quality of life