Patient and parent perspectives on treatment for adolescent idiopathic scoliosis.

Abstract

There is little doubt that long-term, untreated adolescent idiopathic scoliosis (AIS) can cause significant cosmetic deformity. However, researchers do not agree on the psychosocial effects of deformity, or on the diagnoses and treatments themselves. Previous studies have reported little evidence for psychosocial dysfunction due to scoliosis, while others have found that AIS can cause serious disturbances in body image and other indicants of mental health and adjustment.1–4 These studies have mainly been retrospective, and each study has used different instruments to measure psychological parameters and adherence. Based on the data from these studies it can be concluded that bracing may cause some psychological stress to the patient, at least at the initiation of treatment and possibly long-term. Orthopedists, however, still consider bracing to be a benign treatment that is not invasive or necessarily disruptive. Possible stress resulting from brace treatment needs to be considered in the decision-to-treat equation, and the benefits of bracing must outweigh the risk of adverse psychosocial sequelae. There is conflicting information about the potential for long-term psychosocial sequelae associated with either bracing or surgery. MacLean et al.3 examined this issue and discovered that there is a significant period of stress and self-esteem change at the initiation of brace-wear in the majority of patients (88%). They found no evidence of overt psychopathology but did describe some of the issues patients face with brace wear such as soreness, discomfort with activity, and torn clothing. The treatment decision process is likely to have a substantial impact on adherence to bracing regimen. Once the brace is delivered, treatment compliance is completely in the hands of the patient, thus buy-in is necessary. Angst and Deatrick5 explored the decision to undergo surgery for AIS by 8 patients and parents. They found children are involved in decisions surrounding the possibility of surgery and that some families make decisions based on cues predominantly from their physician. This process has not been explored among patients undergoing brace treatment. Difficulties with brace wear were also reported by Vandal et al.6, including problems with decreased mobility, altered physical appearance, clothing choices, and family/personal relationships. DiRaimondo7 estimated that patients wore their braces 65% of the instructed time. Two families experienced profound family strife … due in part to conflicts over brace compliance. Vandal et al.6 used a compliometer to measure adherence with brace wear schedules and found that patients significantly over-reported the number of hours they wore their brace. Patients reported wearing the brace 88% of the prescribed time, compared to the 33% tracked by the monitor. A more recent report confirms this discrepancy. Takemitsu et al.8 found that patient-reported compliance is higher than that logged by a temperature monitor (85% versus 75%). They also observed that compliance decreases with the age of the patient, and that compliance is highest with shorter-wear prescriptions (e.g. 8 hours versus 12, 16 or 23 hours per day). Taken as a whole, the current literature suggests that treatment decisions and compliance with these decisions is not an easy process for patients and families. This study used qualitative methods to explore issues surrounding AIS treatment (surgery and bracing) among a sample of current patients and parents, from their point of view. Qualitative methods are an ideal way to discover patient perspectives surrounding disease and treatment. These methods encourage patient participation in the process and offer an open-ended format for discussion. Subsequently, issues that may have otherwise been ignored can be discovered.9,10 This is especially true in adolescent research since survey responses are typically created by adults, making it likely that topics important to the patient are overlooked. Therefore, the objectives of this study were carried out using the focus group method with patients, and group interviews with their parents. Focus group methods have been endorsed as an especially effective research tool when working with children between the ages of 11 and 14. Children in that age group are more relaxed within a group setting and more likely to share among a group of peers than one-on-one with a stranger.11 This study will examine, through qualitative methods, issues surrounding AIS treatment (surgery and bracing) among a sample of patients and parents that are currently undergoing or have recently undergone treatment. The purpose of this study is to explore three aspects of treatment for adolescent idiopathic scoliosis (AIS) from the perspective of the patient and family. Discussions centered on three core areas: 1) The decision process when choosing a treatment, 2) The impact of the treatment on daily living, and 3) Ease or difficulty in compliance with recommendations.