ABSTRACT
INTRODUCTION: The purpose of this study was to evaluate stress, depressive symptoms, and quality of life (QOL) among caregivers of children with osteogenesis imperfecta (OI) and to determine if associations exist with patient disease-related characteristics. METHODS: Psychosocial outcomes were evaluated in 33 caregivers of 31 patients with OI using the Pediatric Inventory for Parents (assessing stress), PedsQL Family Impact Module (assessing QOL), and Center for Epidemiologic Studies Depression Scale (assessing depressive symptoms). RESULTS: Higher levels of patient pain and lower patient physical functioning were significantly associated with both higher caregiver stress and poorer QOL (p < .05). Center for Epidemiologic Studies Depression Scale scores were not associated with patient pain or physical functioning. DISCUSSION: Parents caring for children with OI with higher levels of pain and/or lower physical functioning are at higher risk of suffering from increased stress and poorer QOL. Interventions should be developed to screen for and target these at-risk caregiver groups with resources and support.
Subject(s)
Depression/etiology , Osteogenesis Imperfecta/therapy , Parents/psychology , Quality of Life , Stress, Psychological/etiology , Adolescent , Adult , Caregivers/psychology , Caregivers/statistics & numerical data , Child , Child, Preschool , Depression/epidemiology , Female , Humans , Male , Middle Aged , Osteogenesis Imperfecta/psychology , Psychiatric Status Rating Scales , Quality of Life/psychology , Stress, Psychological/epidemiology , Surveys and QuestionnairesABSTRACT
BACKGROUND: Children with osteogenesis imperfecta (OI) experience pain and impaired physical functioning. The longitudinal effect of cyclic bisphosphonate treatment on these symptoms has not been described. We serially evaluated pain and functioning in pediatric patients with OI treated with intravenous bisphosphonate therapy. METHODS: Pain and physical functioning were assessed at multiple time-points over two infusion cycles in 22 OI patients (median age 10 years [range 2-21 years]; 8 girls) receiving cyclic intravenous bisphosphonate therapy. Pain was assessed using the FACES® visual analogue scale; physical functioning, including self-care, was assessed using the PedsQL™ Generic Core inventory. RESULTS: Pain scores decreased significantly immediately following infusion and remained reduced at 4 weeks post-infusion, increasing before and decreasing again after subsequent infusion (F = 25.00, p < 0.001). Physical functioning scaled scores improved 4 weeks after infusion and declined before subsequent infusion across patients (F = 10.87, p = 0.007). Exploratory analyses indicated significantly different effects between mild and moderate-severe OI types for pain, but not for physical functioning. No fractures occurred during the study. CONCLUSION: In children with OI, cyclic intravenous bisphosphonate therapy transiently reduces pain and improves functional abilities. Pain relief occurs immediately following infusion with functional improvements observed 4 weeks later. Both pain and physical functioning return to pretreatment levels by the subsequent infusion.
Subject(s)
Activities of Daily Living , Bone Density Conservation Agents/therapeutic use , Diphosphonates/therapeutic use , Osteogenesis Imperfecta/drug therapy , Pain/drug therapy , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Infusions, Intravenous , Male , Osteogenesis Imperfecta/complications , Pain/diagnosis , Pain/etiology , Pain Measurement , Treatment Outcome , Young AdultABSTRACT
Concerns about a child's growth are one of the most common topics parents voice during general pediatric office visits and are a leading cause for referral to a pediatric endocrinologist. There are a variety of conditions that lead to short stature in children; however, in the absence of true pathology, idiopathic short stature and constitutional delay are the most frequent causes. This article reviews the general approach to evaluating the short child and clinical signs that should prompt further evaluation and referral. We also address the unique psychological issues that these children face and approaches to counseling families with a child with idiopathic short stature.
