The first application of a general HRQOL measure to RRP occurred in 2000, when Hill et al. used the Short Form 36 (SF36) questionnaire in a group of adults with RRP (Hill et al. 2000). The SF36 is a 36-item, patient-reported survey of health that consists of 8 domains including physical, social and mental health. Although this study was limited by its small size and incomplete response rate (26 respondents of 36 contacted), it provided novel evidence that RRP scored lower than the general population in generic HRQOL, particularly in the domains of “role limitation (physical),” “energy/vitality,” “pain,” and “social functioning.” This effect was much more apparent in those individuals with greater disease volume. Differences from the general population existed but were small in the domains of “mental health” and “general health perception.”

The general HRQOL of a pediatric RRP population was first studied by Lindman et al. in 2005, employing the Pediatric Quality of Life Inventory (PedQL 4.0) (Lindman et al. 2005). PedQL is a 23-item survey validated in children and adolescents that includes both child self-report and parent self-report in the domains “physical,” “emotional,” “social,” and “school functioning.” The study included 22 otherwise healthy children between 2 and 18 years. The study found PedQL scores were worse in all domains in the RRP children than expected in healthy children. Additionally, the child self-report scores for RRP children aged 5 to 18 years, were similar for those expected from children with other chronic diseases.

The concept of health utility measurement has gained importance as it provides a method for the valuation of health in economic evaluation, such as the calculation of quality-adjusted life years (QALYs). This method of general HRQOL measurement was first applied to RRP through the use of the multi-attribute Health Utilities Index version 3 (HUI3) (Chadha et al. 2010). The HUI3 is a measure of health utility and quality of life validated in the pediatric population, consisting of eight domains: vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain, each with 5–6 levels of ability/disability. The study included all 20 children with active RRP at the center, with age range of 17 months to 17 years. The mean HUI3 score was 0.76 on a scale of 0 (death) to 1 (perfect health). This was comparable to cystic fibrosis in a similarly-aged population (Chadha et al. 2010).

A further study obtained data on utility using the 15D Questionnaire, which consists of questions on 15 domains of HRQOL. This study aimed to see the HRQOL impact of JORRP on adults later in life. The population included 18 of 32 adult RRP patients known to the center (Ilmarinen et al. 2011), aged 22 to 71 years old, an average of 40 years from first diagnosis. In that study, HRQOL gave a mean score of 0.91, which was only slightly lower than the score for controls (0.95), but all except four of the participants were in complete remission with no active disease, and the groups’ interval since the last surgical procedure ranged from 1 to 27 years.

An attempt was made to explore the burden on a family of having child with RRP, using the Impact on Family Life Scale (IFS) . This is a validated 27-item scale that measures a caregiver’s perception of the impact caring for a child with a chronic health condition has on family life, using four dimensions (economic, social, familial and strain). The median IFS for the 20 children with active JORRP included in the study was 0.75 (0 = least impact, 1 = most impact) (Chadha et al. 2010). High total scores on IFS are concerning for potential correlation with maternal psychiatric symptoms, poor child health, poor child adjustment and increased child hospitalizations.

Historically, severity and outcome in voice disorders were measured from the clinician’s perspective, using for example, perceptual measures, imaging, or acoustic measurements. Subsequently physicians and speech and language therapists treating these individuals have developed a vast array of patient-reported measures, many of which could be considered measures of HRQOL as they include questions on the functional, physical, psychological/emotional, and social effects of voice dysfunction (see Fig. 6.2) (Branski et al. 2010). Many of these tools were adapted for children, and they have undergone varying degrees of validation in different populations with voice disorders. With the major impact on RRP individuals being most commonly voice-related, tools measuring voice-related QOL have largely become surrogate tools for measuring RRP HRQOL.