Assessing psychosocial risk in pediatric cystic fibrosis

Abstract

Background Psychosocial risk factors are known to impact quality of life, treatment adherence, and health outcomes. No standardized comprehensive psychosocial risk screener is routinely utilized in cystic fibrosis (CF) care. The objectives of the study were to describe the range and severity of psychosocial risk within this CF population, investigate the reliability of a comprehensive psychosocial screener in pediatric CF clinical care, and explore relationships between psychosocial risk and key factors affecting health outcomes. It was hypothesized that the PAT‐CF total and subscale α coefficients would be similar to those found in other pediatric medical populations. Method Parents of 154 children with CF completed a CF‐specific version of the Psychosocial Assessment Tool_All‐lit (PAT‐CF), an empirically‐based psychosocial risk assessment, during routine CF clinical care. Results The internal consistency of the PAT‐CF Total score was 0.71. Total score and subscale reliabilities reflect findings in other pediatric populations. Total risk scores fell in the following categories: 7% (Clinical‐highest risk), 41% (Targeted), and 52% (Universal‐lowest risk), respectively. Increased psychosocial risk was associated with Medicaid status and lower parent education, whereas having private insurance was associated with decreased psychosocial risk. Conclusions The PAT‐CF can feasibly be used as an empirically‐based comprehensive psychosocial risk tool in routine CF care and is acceptable by parents. In addition to providing universal anticipatory guidance regarding child and family wellness, early identification of risk factors allows care teams to proactively provide targeted support and intervention for specific psychosocial risk factors to promote improved quality of life and ability to sustain daily care.

Screening for caregiver psychosocial risk in children with medical complexity: a cross-sectional study

“… 23 37 39 42 For example, Hearps et al 23 investigated caregivers of children with congenital heart disease and found only lower parental education attainment to be a significant predictor of higher PAT scores. Parental education was also deemed significant in two other studies of children with cystic fibrosis 39 and cancer. 37 To the best of our knowledge, this relationship has not been previously examined in CMC using the PAT.…”

Starting early: An international focus on mental health in children living with cystic fibrosis

“…This unique information will be valuable for CF centers that go beyond current guidelines to offer routine screening in children less than 12 years of age. Of note, some pediatric CF centers which conduct systematic psychosocial assessment employ more comprehensive measures screening not only for depression and anxiety, but also for ADHD and family functioning more broadly . To be adopted on a large scale, screening instruments for younger children would ideally be brief, nonburdensome, validated for this age group, and freely available in multiple languages.…”

Promoting emotional wellness in children with CF, part II: Mental health assessment and intervention

“…Another CF center screened for psychosocial risk in families of children, ages birth to 17, living with CF using a comprehensive tool, the Psychosocial Assessment Tool_All‐lit modified for CF (PAT‐CF) 14 . Parents frequently reported feelings of being “sad or depressed” and “a lot of fear, worry, or anxiety” in themselves (54.5% depression; 55.8% anxiety), their child with CF (10.4% depression; 31.8% anxiety), and their other children (9.5% depression; 27.8% anxiety).…”

“…Parents frequently reported feelings of being “sad or depressed” and “a lot of fear, worry, or anxiety” in themselves (54.5% depression; 55.8% anxiety), their child with CF (10.4% depression; 31.8% anxiety), and their other children (9.5% depression; 27.8% anxiety). Nearly half (45.5%) reported trouble sustaining daily CF care 14 …”

“…There is substantial evidence that depression and anxiety are common in adolescents and adults with cystic fibrosis (CF) and their caregivers, 1 with adverse impacts on quality of life (QoL), 2,3 disease self‐management, 4 health care costs, 5,6 and survival 7 . Studies have begun to document analogous findings for mental health conditions in preadolescents with CF, 8‐14 reinforcing the value of prevention and early intervention 15 . People living with CF often experience multiple biopsychosocial stressors over time, increasing the risk for the phenotypic emergence of these conditions.…”