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Table 4 Emotional and psychosocial challenges during the patient journey

From: Mapping the PIK3CA-related overgrowth spectrum (PROS) patient and caregiver journey using a patient-centered approach

Stage of life Emotional/psychosocial challenges across PROS
Birth to toddler Particularly challenging period for caregivers
Searching for answers is overwhelming and stressful
Many struggle with discussing with friends and family
Concerns about having other children
Frustration with lack of treatment options
Constant worry and uncertainty
Elementary school Patients face constant staring, questions, assumptions of disability
Patients may experience frustration with limitations on activities and clothes/shoes
For more severe cases, caregivers may need to cope with realization that patient’s condition will not improve significantly
Puberty/teenager Patients struggle with peer acceptance
Some patients struggle with mental health and anxiety (despite strong support systems)
Caregivers are concerned about patient well-being at this difficult stage of life
Patients may experience anger and self-consciousness; less willing to discuss condition
For some patients, difficulty finding trendy clothing due to larger extremities
Caregivers have concern and uncertainty about behavior issues (when applicable)
Adulthood Patients have challenges finding new doctors and constantly explaining condition
For patients, the planning needed to manage care can be exhausting
Patients and caregivers are excited about independence but concerned about health issues
Stress for caregiver if patient requires constant care into adulthood (contingency planning, etc.)
Depending on severity and challenges they face, independent patients without strong support systems may struggle
  1. PROS, PIK3CA-related overgrowth spectrum