Body Image and Quality of Life and Brace Wear Adherence in Females With Adolescent Idiopathic Scoliosis.

BACKGROUND: Clinical evidence regarding the ability of braces to decrease the risk of curve progression to surgical threshold in patients with adolescent idiopathic scoliosis (AIS) continues to strengthen. Unfortunately, there is still a great deal of uncertainty regarding the impact of brace wear on psychosocial well-being or the impact of psychological well-being on brace wear adherence. The purpose of this study is to evaluate psychosocial well-being, in particular body image and quality of life (QOL), and brace wear adherence in female AIS patients undergoing brace treatment. METHODS: The Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST) was a multicenter, controlled trial using randomized and preference assignments into an observation or brace treatment group. BrAIST patients were skeletally immature adolescents diagnosed with AIS having moderate curve sizes (20 to 40 degrees). Patients in the bracing group were instructed to wear a thoracolumbosacral orthosis, at least 18 h/d. Scores on the Spinal Appearance Questionnaire and the PedsQL4.0 Generic Scales from 167 female BrAIST patients who were randomized to brace treatment (n=58) and patients who chose brace treatment (n=109) were analyzed. RESULTS: At baseline and at 12 months, no differences were found between the least-adherent brace wear group (<6 h/d) and most-adherent brace wear group (≥12 h/d) patients in terms of major curve, body image, and QOL. In the most-adherent group, poorer body image scores were significantly correlated with poorer QOL scores at baseline, at 6 months, and at 12 months but not at 18 months. In general, body image scores and QOL scores were not significantly correlated in the least-adherent group. When comparing patients that had a ≥6 degree increase of their major curve between baseline and 12 months to patients that did not, there were no significant differences in body image or QOL scores. CONCLUSIONS: For females adolescents with AIS, body image and QOL do not have a significant impact on brace wear adherence and are subsequently not significantly impacted by brace wear. LEVEL OF EVIDENCE: Level II-therapeutic (prospective comparative study).

An exploration of information exchange by adolescents and parents participating in adolescent idiopathic scoliosis online support groups.

BACKGROUND: Research indicates that healthcare providers frequently fail to adequately address patients' health information needs. Therefore, it is not surprising that patients or parents of a sick child are seeking health information on the internet, in particular in online support groups (OSGs). In order to improve our understanding of the unmet health information needs of families dealing with adolescent idiopathic scoliosis (AIS), this study assessed and compared the types of information that adolescents and parents are seeking in OSGs. METHODS: This study used two publicly accessible AIS-related OSGs on the National Scoliosis Foundation (NSF) website that targeted those who are receiving brace treatment and those under observation without treatment. Information exchanges were coded as providing or seeking information. Types of information being exchanged were categorized into several AIS-specific and brace-specific categories. Through a review of over 8,000 messages, 305 adolescents with AIS and 300 parents of a child with AIS were identified and categorized based on stage of illness/treatment. One message from each individual was randomly selected and coded for analysis. RESULTS: There were significantly more (p < 0.001) parents that had a recently diagnosed child compared to recently diagnosed adolescents participating in the AIS-related OSGs, whereas there were significantly more (p = 0.004) adolescents that experienced brace treatment compared to parents of a child that experienced brace treatment. The most frequent information exchanged by adolescents and parents was AIS-related concerns regarding causes, diagnosis, and progression of the condition. However, compared to adolescents, parents exchanged this AIS-related information significantly more (p < .001) in their posts. Finally, compared to parents, adolescents exchanged significantly more information about appearance-related concerns regarding both AIS-related deformity (p < 0.002) and wearing a brace (p < 0.001). CONCLUSION: Families dealing with AIS are participating in OSGs to exchange information, in particular information related to the condition and to treatment. This study found similarities and differences regarding how information was exchanged (providing or seeking) and regarding frequency and types of information exchanged. Knowledge of these similarities and differences may be useful for improving health communication in the healthcare setting, at home, and for development and improvement of AIS-related website support.

Body Image and Quality-of-Life in Untreated Versus Brace-Treated Females With Adolescent Idiopathic Scoliosis.

STUDY DESIGN: The Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST) included skeletally immature high-risk patients with adolescent idiopathic scoliosis (AIS) with moderate curve sizes (20°- 40°). BrAIST was a multicenter, controlled trial using both randomized and preference treatment arms into either an observation group or a brace treatment group. OBJECTIVE: The aim of this study was to analyze and compare body image and quality-of-life (QOL) in female AIS patients who were observed or treated with a brace. SUMMARY OF BACKGROUND DATA: Brace treatment is an effective means for controlling progressive scoliosis and preventing the need for surgery, but there is no consensus regarding the effect of brace treatment on body image or on QOL in adolescents with AIS. METHODS: Data from female BrAIST patients in the randomized (n = 132) or preference (n = 187) arms and were observed (n = 120) or brace treated (n = 199) were analyzed. Patients completed the Spinal Appearance Questionnaire (SAQ) and the Pediatric Quality of Life Inventory (PedsQOL) 4.0 Generic Scales at baseline and 6 month follow-up visits up to 2 years. Items on the SAQ measured three body image constructs (self, ideal, and overall). The PedsQOL measured health, activities, feelings, social factors, and school. RESULTS: . In general, there were no significant differences within or between study arms or treatments regarding body image or QOL through 2 years of follow-up. Poorer body image was significantly correlated with poorer QOL during the first 2 years of follow-up regardless of study arm or treatment. Patients who crossed-over to a different treatment and patients with largest Cobb angles ≥ 40 degrees had significantly poorer body image, in particular self-body image, compared with those that did not. CONCLUSION: This study does not support findings from previous research indicating that wearing a brace has a negative impact on or is negatively impacted by body image or QOL. LEVEL OF EVIDENCE: 2.

Disclosure strategies, social support, and quality of life in infertile women.

STUDY QUESTION: Do the strategies women use to disclose information about their infertility to social network members impact the quality of the support they receive and their quality of life? SUMMARY ANSWER: The data showed that women who disclosed infertility-related information in direct ways, rather than in indirect ways (e.g. by incremental disclosures or through third parties), to social network members perceived higher quality support and reported greater quality of life related to their infertility experience. WHAT IS KNOWN ALREADY: Social support has been shown to buffer stress associated with various health issues including infertility. The way people disclose information about stressors has been associated with the quality of the support they receive. Disclosing information in a way that most effectively elicits support is beneficial because women with infertility who have lower levels of stress are more likely to seek and remain in treatment. STUDY DESIGN, SIZE, DURATION: This cross-sectional study of 301 infertile women was conducted in the USA. PARTICIPANTS/MATERIALS, SETTING, METHODS: To determine the variation in length of infertility and treatment decisions, we conducted an online survey of 301 American women coping with infertility. We investigated the strategies women used to disclose infertility-related information with social network members, their perceptions of support from friends and family, and their quality of life both in general (overall quality of life) and related to the experience of infertility (fertility quality of life). MAIN RESULTS AND THE ROLE OF CHANCE: Direct disclosure of experiences related to infertility was positively and significantly associated with the perceived quality of social support received (P < 0.01). Strategies of disclosure that use entrapment or indirect media were negatively associated with fertility quality of life (P < 0.001). Directly (P < 0.01) and incremental disclosures (P < 0.01) were positively associated with overall quality of life, while the use of humor was negatively associated with overall quality of life (P < 0.01). Perceived support quality also mediated the influence of direct disclosures on women's fertility quality of life (95% CI: 0.18, 1.05) and overall quality of life (95% CI: 0.10, 0.30). This effect is particularly noteworthy for the model predicting fertility quality of life, which exhibited a non-significant main effect with direct disclosures. The non-significant main effect combined with the significant indirect effect suggests that perceived support quality fully mediates the association between direct disclosures and fertility quality of life. LIMITATIONS, REASONS FOR CAUTION: The cross-sectional nature of our convenient sample did not allow us to test cause and effect. It is equally plausible that women who perceive support are more likely to disclose. Longitudinal data are necessary to test the cyclic nature of these variables and confirm directionality. WIDER IMPLICATIONS OF THE FINDINGS: When women make the decision to reveal information about their infertility, direct disclosure (i.e. face-to-face, clearly, verbally and with the opportunity for an immediate response) was the only strategy that significantly corresponded with perceived support quality and was one of only two strategies that were positively associated with quality of life. To the extent that social support reduces stress, and lower stress increases the chance that people seek and stay in treatment, infertility clinics and therapists can use this information as a low-cost strategy for supporting infertile women. Scholars and practitioners can also instruct women coping with infertility about how to most effectively engage in seeking effective support. STUDY FUNDING/COMPETING INTERESTS: No external funding was either sought or obtained for this study and no competing interests are declared.