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Caregiver Burden Due to Pulmonary Exacerbations in Patients with Cystic Fibrosis
Ellison Suthoff1, Jochen G Mainz2, Desmond W Cox3
1Vertex Pharmaceuticals Incorporated, Boston, MA.
Insights
Pulmonary exacerbations in children with cystic fibrosis (CF) significantly increase caregiver burden, impacting mental health, productivity, and daily functioning. Preventing these exacerbations is key to reducing caregiver stress.
Area of Science:
- Pediatric Pulmonology
- Caregiver Health
- Quality of Life Studies
Background:
- Pulmonary exacerbations in pediatric cystic fibrosis (CF) often necessitate lengthy hospitalizations.
- The impact on primary caregivers remains poorly understood.
- Caregivers face significant challenges during these critical treatment periods.
Purpose of the Study:
- To quantify the burden on primary caregivers of children with CF during pulmonary exacerbations.
- To assess the effects on caregiver productivity, mental and physical health, and social functioning.
- To provide data for interventions aimed at supporting caregivers.
Main Methods:
- Prospective observational study involving 88 caregivers across Germany, Ireland, the UK, and the US.
- Surveys administered during hospitalization (T1) and after recovery (T2).
- Utilized validated instruments including SF-12, WPAI:SHP, CHQ-PF28, CQQ-CF, and MSPSS.
Main Results:
- Caregivers reported significantly increased mental health burden and work/activity impairment during exacerbations.
- Physical health scores were lower during hospitalization compared to the well state.
- Negative impacts on family, social, and emotional functioning were more frequently reported during exacerbations.
Conclusions:
- Hospitalization for pulmonary exacerbations imposes a substantial burden on pediatric CF caregivers.
- Reducing the frequency of pulmonary exacerbations could significantly alleviate caregiver distress.
- Further research into caregiver support strategies is warranted.
Objective:
To describe the poorly understood burden of pulmonary exacerbations experienced by primary caregivers of children (aged 2-17 years) with cystic fibrosis (CF), who frequently require prolonged hospitalizations for treatment of pulmonary exacerbations with intravenous (IV) antibiotics.
Study Design:
In this prospective observational study, 88 caregivers in Germany, Ireland, the United Kingdom, and the US completed a survey during pulmonary exacerbation-related hospitalizations (T1) and after return to a "well state" of health (T2). The impact of pulmonary exacerbations on caregiver-reported productivity, mental/physical health, and social/family/emotional functioning was quantified.
Results:
Primary caregivers of children with CF reported significantly increased burden during pulmonary exacerbations, as measured by the 12-item Short-Form Health Survey mental health component and the Work Productivity and Activity Impairment: Specific Health Problem absenteeism, presenteeism, work productivity loss, and activity impairment component scores. Compared to the "well state," during pulmonary exacerbations-related hospitalization caregivers reported lower physical health scores on the Child Health Questionnaire-Parent Form 28. Quality-of-life scores on the Caregiver Quality of Life Cystic Fibrosis scale and total support score on the Multidimensional Scale of Perceived Social Support did not differ significantly between T1 and T2. More caregivers reported a negative impact on family/social/emotional functioning during pulmonary exacerbations than during the "well state."
Conclusions:
Pulmonary exacerbations necessitating hospitalization impose a significant burden on primary caregivers of children with CF. Preventing pulmonary exacerbations may substantially reduce this burden.
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