Abstract

Impairments in quality of life (QoL) have been reported in patients with fibrous dysplasia (FD). Here, we examine coping strategies in FD and assess whether these coping strategies are associated with QoL and disease severity. Ninety-two patients (66% females) filled out the Utrecht Coping List (UCL), Short Form-36, and the Brief Pain Inventory (BPI). Coping strategies of patients with FD were compared with reference data from a random sample of Dutch women and patients with chronic pain. Compared to healthy adults, patients expressed more emotions (p < 0.01). Compared to patients with chronic pain, patients with FD used more active coping strategies (p < 0.001), and sought more distraction (p = 0.01) and more social support (p < 0.001). Using more passive coping strategies was associated with more impairment in social function, physical role, mental health, vitality (all p < 0.001), and general health (p < 0.01). Using more avoidant coping strategies was associated with worse mental health and less vitality (both p < 0.01). More expression of emotions was associated with worse mental health (p < 0.01). Type and clinical severity of FD were not associated with coping behavior. Patients with FD have different coping strategies compared to random Dutch reference populations with or without pain. In FD, using more passive coping strategies was associated with more impairment in several aspects of QoL. There was no relationship between coping behavior and clinical characteristics, pointing to biomedical variables not determining the way patients cope with their illness. Recognition of less effective coping strategies can be helpful in the understanding and adaptation of these coping strategies, improving personalized clinical care, with the ultimate goal to improve QoL in patients with FD.

Highlights

  • In a recent study, it was shown that patients with fibrous dysplasia (FD), those patients with bone pain, reported significant impairment in quality of life (QoL), and1 3 Vol.:(0123456789)Coping refers to the skills used in handling situations, crises, or life events, with coping strategies influencing the way an individual handles the burden of having a chronic illness

  • Considering the previous observed illness perceptions and impairment in QoL, it was hypothesized that patients with FD report less effective coping strategies compared to healthy control data

  • There was a significant difference between FD types in age (MFD 43.5 years, polyostotic FD (PFD) 51.0 years, McCune Albright syndrome (MAS) 52.3 years; p = 0.04), in the occurrence of at least one fracture (MFD 13 (21%), PFD 10 (45%), MAS 6 (86%); p < 0.001), and in the history of previous surgical intervention for FD (MFD 20 (32%), PFD 11 (50%), MAS 20 (32%); p = 0.001)

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Summary

Introduction

It was shown that patients with fibrous dysplasia (FD), those patients with bone pain, reported significant impairment in quality of life (QoL), and1 3 Vol.:(0123456789)Coping refers to the skills used in handling situations, crises, or life events, with coping strategies influencing the way an individual handles the burden of having a chronic illness. The second category is ‘appraisal centered coping,’ which aims at changing the threatening character of an event, thereby changing the perception of a situation. This mainly involves cognitive and observational functions, such as reassuring thoughts applied to comfort oneself in a difficult situation. Several studies using the CSM to examine coping strategies in patients with chronic illnesses have identified the significant impact of these strategies on QoL [7,8,9,10]. Considering the previous observed illness perceptions and impairment in QoL, it was hypothesized that patients with FD report less effective coping strategies compared to healthy control data. Considering the theory of the CSM, it was hypothesized that less effective coping strategies correlate with more impairment in QoL

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