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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