Date of Award


Degree Type


Degree Name

Master of Arts (MA)




Health-related quality of life (HRQOL) is a multidimensional construct including an individual's physical and mental health and psychosocial well-being (De Civita et al., 2005), and the measurement of HRQOL has been recognized as a key marker of health outcomes in pediatric populations (Eiser & Jenney, 2007). Due to medical and technological advances, an increasing number of individuals with chronic illnesses are living longer. As such, research that investigates improvements in HRQOL in youth with chronic illnesses has become essential. Indeed, the number of studies examining HRQOL in pediatric populations has increased markedly; spina bifida (SB) is one among several chronic illnesses that has received increased attention with regard to HRQOL assessment in the past decade (see Sawin & Bellin, 2010 for a review).

The experience of a chronic illness may have deleterious consequences on several aspects of a youth's life. In particular, SB is a relatively common congenital birth defect associated with a multitude of physical and cognitive impairments (e.g., orthopedic abnormalities, urinary and bowel difficulties; Fletcher & Brei, 2010) as well as individual and contextual social-environmental difficulties (e.g., poor social competence, a stressful family environment; Alriksson-schmidt, Wallander, & Biasini, 2007). Due to the range of physical, cognitive, and social impairments associated with this condition, youth with SB may be at an increased risk of reduced HRQOL. Research on HRQOL for children and

adolescents with SB has begun to identify demographic, illness-related, and social-environmental factors that are associated with HRQOL. Elucidating factors that influence HRQOL is an important step in informing the development of interventions to improve HRQOL in youth with SB. Thus far, extant research investigating HRQOL in youth with SB has tended to focus on non-modifiable demographic and illness-specific correlates, such as age, gender, and degree of mobility impairment. Studies examining modifiable social-environmental factors on youth's HRQOL may be particularly important in informing future interventions for youth with SB.

In addition, despite the importance of this work, current research has several methodological weaknesses, including the utilization of mixed samples, small sample sizes, single informants, and cross-sectional designs. The current study seeks to address these weaknesses and bridge critical gaps in the literature by testing a longitudinal, multi-method and multi-informant model of individual and contextual social-environmental predictors of HRQOL in youth with SB across two independent studies (see Figure 1). The following sections provide a general overview of historical and current conceptualizations, measurement issues related to quality of life as a construct, and an extensive review of studies that have investigated demographic, illness-specific, and social-environmental correlates of HRQOL in youth with SB. Methodological weaknesses and gaps in current literature are identified and a detailed description of the current study is provided.

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