Quality of Life among Youth with Misophonia: The Role of Internalizing Symptoms and Pessimism

Misophonia is characterized by distressing emotional and physiological reactions to specific sound triggers and visual stimuli (Swedo et al., 2022). Triggers are often oral-nasal in nature (e.g., breathing, eating, lip smacking, sniffing, throat clearing, talking or humming) although there is a wide variety of triggers such as tapping, typing on a keyboard, pen clicking, and animal sounds as well as visual stimuli like leg swinging or knuckle cracking (Swedo et al., 2022). In response to these triggers, individuals with misophonia often experience intense emotional reactions such as anger, annoyance, irritation, disgust, shame, guilt, and physiological reactions (e.g., increase heart rate, sweating, muscle tension, and autonomic arousal (Swedo et al., 2022; Jager et al., 2020; Edelstein et al., 2013)). Behavioral responses to misophonic triggers can include verbal and physical aggression, assertively asking others to stop making noises, covering eyes and ears, crying, active avoidance of hearing triggers (e.g., walking away, listening to music), and mimicking trigger sounds, among others (Edelstein et al., 2013; Jager et al., 2020; Siepsiak et al., 2023). Misophonia is associated with functional impairment across family, social, academic and work domains (Brout et al., 2018; Swedo et al., 2022; Wu et al., 2014; Zhou et al., 2017).

Given this often disabling clinical profile, it seems as though individuals with misophonia would experience considerably poorer quality of life (QoL); however, investigations into the quality of life (QoL) in this population are limited, particularly among children and adolescents. QoL is a multidimensional concept that describes the overall well-being of an individual and the extent to which an individual can enjoy and is satisfied with their life (Endicott et al., 2006; Felce & Perry, 1995). Assessing QoL provides unique insight into an individual’s perceived impact of illness and can be used as an additional metric to operationalize symptom severity as well as response to interventions in research and clinical settings. Outside of misophonia, QoL is consistently inversely correlated with the severity of mental health and somatic symptoms (Coluccia et al., 2017; Fernandes et al. 2023; Lack et al., 2009; Storch et al., 2018). Across mental health conditions such as obsessive–compulsive disorder (OCD; (Weidle et al., 2015)), chronic tic disorders (Storch et al., 2007), and internalizing disorders (Martinsen et al., 2016), QoL is lower relative to controls. Similarly, hearing conditions such as tinnitus or hyperacusis are associated with problems with sleep, attention, headache, stress, functioning and emotional well-being in youth (Kim et al., 2012; Myne & Kennedy, 2018; Potgieter et al., 2020; Tegg-Quinn et al., 2021). Youth with comorbid diagnoses experience worse QoL than those who have a single diagnosis (Johansson et al., 2013; Masellis et al., 2003), likely due to the cumulative burden coupled with each condition. Internalizing symptoms, which refer to internal responses that manifest in disorders such as depression and anxiety, are uniquely associated with QoL in adolescents, even when accounting for demographic and environmental factors (Salum et al., 2014). Similarly, externalizing symptoms, which refer to external behaviors that manifest in impulsivity, anger, aggression, have been found to be associated with QoL in both clinical (Lack et al., 2009) and medical samples (Jackson et al., 2014). Given the documented severity and associated impairment in misophonia, high rates of its co-occurrence with internalizing conditions (Guzick et al., 2023; Jager et al., 2020; Siepsiak et al., 2020a), which can develop as early as during childhood (Rinaldi & Simner, 2023), and the known effects of stress on physical and mental health (LeMoult et al., 2020; O’Connor et al., 2021; Stults-Kolehmainen & Sinha, 2014), it is conceivable that youth with misophonia may experience worse QoL than their non-misophonic peers.

Understanding QoL in youth with misophonia has potential clinical and policy implications. First, attenuated QoL may lead to health deterioration due to its association with decreased resilience (Anderson et al., 2020), increased depressive symptoms (Thabrew et al., 2018) and sleep deprivation (Paiva et al., 2015). Second, there is emerging evidence that supports the association between misophonia symptoms and self-destructive behaviors (i.e., self-harm, suicidal thinking). A recent study by Simner and Rinaldi (Simner & Rinaldi, 2023) found that adults with current misophonia symptoms reported poorer well-being than non-misophonic adults during their adolescence and early adulthood. Furthermore, in comparison to the non-misophonic control group, more female adults with current misophonia symptoms endorsed a history of self-harm and suicidal feelings at the age of 16, and a history of self-harm with intent to die and suicidal ideation at the age of 24 (Simner & Rinaldi, 2023). In another study by Siepsiak and colleagues (Siepsiak et al., 2023), adolescents with misophonia reported their engagement in self-harm behaviors (e.g., pinching, scratching skin) while hearing the triggers sounds and the associated results (e.g., bruises, scratches, bleeding). Given that self-harm and suicidality are associated with lower life satisfaction and well-being (Le et al., 2023), these findings highlight that youth with misophonia might be at risk of experiencing poor QoL or that they may be engaging in self-destructive behaviors due to poor QoL. Third, understanding QoL will provide further justification for developing and evaluating interventions and policies for this population, as well as provide guidance on domains that may be necessary to specifically target in treatment.

However, research on misophonia and its association with QoL is still in its infancy. In an adult study, Jager and colleagues (Jager et al., 2020) suggested that QoL is adversely impacted among individuals with misophonia. In an online, longitudinal survey, adults with misophonia reported lower QoL than the general population at baseline and at a 1-year follow-up, and the difference between reported QoL was prominent for emotional well-being and social functioning (Dibb & Golding, 2022). In a pediatric study, Rinaldi and colleagues (Rinaldi et al., 2022) examined QoL among 15 children with elevated misophonia symptoms and showed that these children had poorer health-related QoL and satisfaction with life than peers without elevated misophonia symptoms. In other work, misophonia severity was negatively associated with QoL in youth although QoL was not significantly different between misophonia and anxiety groups (Cervin et al., 2023; Guzick et al., 2023).

To extend this line of research in a novel way, the present study examined QoL in youth with misophonia by 1) recruiting a large sample size within the United States of America, and 2) investigating multiple variables associated with misophonia symptom severity (e.g., pessimism). Specifically, we had two aims. First, we examined whether youth with misophonia reported more impaired QoL compared to a general US youth sample. Given that a previous study by Rinaldi and colleagues (Rinaldi et al., 2022) found that children with misophonia reported poorer well-being on a brief, four-item QoL measure, which assesses well-being in major life domains (i.e., home, school, friends, and health) as well as based on our clinical experience, we hypothesized that QoL would be impaired in youth with misophonia compared to their peers without misophonia. To assess QoL in our sample, we utilized a QoL measure (Endicott et al., 2006) that assesses well-being across a broad range of life domains, including the aspects examined in Rinaldi and colleagues’ study (Rinaldi et al., 2022), and additional areas such as mood/feelings, play or free time, and energy level. Second, we examined whether different features of misophonia (severity, number of triggers, responses), co-occurring mental health symptoms and sociodemographic information were associated with QoL among youth with misophonia. Based on previous research in non-misophonic conditions (e.g., OCD, anxiety disorders), it was expected that misophonia symptom severity would be negatively related to QoL. We also predicted that internalizing and externalizing symptoms would each be uniquely associated with poorer QoL.

We report on QoL in 102 youth with clinically significant misophonia, including baseline estimates, comparison to a normative sample of US youth, and clinical and sociodemographic correlates. We found that youth with misophonia had lower QoL than a general US youth sample, and the difference was particularly pronounced for older youth. Internalizing symptoms (25%) and pessimism about one’s sound difficulties (13%) contributed mostly to poor QoL among the youth with misophonia. These findings emphasize that youth, especially adolescents, with misophonia might be at risk of experiencing poor QoL and identify variables associated with misophonia that should be considered in the assessment and treatment of misophonia.

Older youth with misophonia reported a moderately lower level of QoL than non-misophonic peers, whereas younger children with misophonia reported similar QoL to their counterparts. This may be because misophonia-associated impairment increases as youth transition into adolescence. Adolescence is a challenging time, during which QoL and life satisfaction naturally tend to decrease (Aymerich et al., 2021; Haraldstad et al., 2011) and many forms of psychiatric problems emerge (Paus et al., 2008; Solmi et al., 2022). The inverse association between age and QoL among youth with misophonia in the present study appears to be particularly driven by an increase in internalizing symptoms. Indeed, age was significantly correlated with internalizing symptoms, indicating more symptoms among older participants, and the association between age and QoL was no longer significant when internalizing symptoms were accounted for.

Among four MAQ scales, assessing different aspects of misophonia severity (i.e., pessimism, distress, interference, and non-recognition), only pessimism was significantly associated with poor QoL. This result is consistent with findings in non-clinical youth, where pessimism has been negatively associated with QoL (Häggström Westberg et al., 2019) and satisfaction with life (Extremera et al., 2007). Pessimism involves negative thoughts about one’s future and a lack of hope, which has potential to be uniquely associated with the experiences of misophonia symptoms. Individuals with pessimism are more prone to experience negative emotions, ruminate, and be vulnerable to stressful events (Jones et al., 2017). Therefore, youth with misophonia who are pessimistic might be especially susceptible to severe distress in response to stressful misophonic events and subsequently have poor QoL. Conversely, severe distress and daily interference associated with misophonia might lead youth to feel helpless and be more pessimistic about their symptoms, which could contribute to poor QoL. Moreover, children and their parents might feel despair and isolated due to many triggers being located in their home/family environment (Siepsiak et al., 2023). As family climate and social support are important protective factors of QoL (Otto, C., Haller, A.-C., Klasen, F., Hölling, H., Bullinger, M., Ravens-Sieberer, U., & Group, on behalf of the B. study, 2017), we speculate that this may be related to poorer QoL. Finally, lack of available effective treatment options for misophonia (Smith et al., 2022) and lack of understanding from significant others (e.g., clinicians, school personnel, family members, peers) (Guzick et al., 2024) could also lead youth with misophonia feel pessimistic about their symptom prognosis. Therefore, clinicians would be well-advised to consider pessimism as a relevant treatment target and assess its level at baseline as well as throughout treatment due to its relationship with QoL and potential to negatively influence treatment outcome. However, it is important to note that the MAQ pessimism only measures the level of pessimism related to misophonia and not a general tendency of feeling pessimistic. While it is important, we did not examine correlations between the overall MAQ (or A-MISO-S) and QoL as well, because these results were reported in another study (r = -0.52, p < 0.001; r = -0.26, p < 0.05) (Guzick et al., 2023).

In support of our hypothesis, internalizing symptoms were inversely associated with QoL. However, contrary to our hypothesis, externalizing symptoms were not significantly associated with QoL. The result for internalizing symptoms is in line with findings from non-misophonic conditions such as obsessive–compulsive disorder, anxiety, depression and medical illnesses (Lack et al., 2009; Luyckx et al., 2014; Stevanovic et al., 2011) and is consistent with the inverse relationship we found between pessimism and QoL since feeling more pessimistic about misophonia symptoms could lead to experiencing more exacerbated negative emotions and distress, or alternatively, negative emotions and distress could aggravate the feelings of pessimism. Internalizing symptoms are consistently associated with loneliness, low friendship-quality, health problems, and school challenges (Keenan-Miller et al., 2007; Ladd & Ettekal, 2013; Lijster et al., 2018, 2019; Mychailyszyn et al., 2010; Proctor et al., 2009), and the compounded impact of misophonia symptoms with internalizing problems may particularly influence misophonic youth, which indicates youth with both misophonia and internalizing symptoms might be at a particular risk of experiencing poor QoL. Externalizing symptoms were not uniquely associated with QoL in this study. This may reflect that externalizing symptoms do not confer additional morbidity perhaps, because youth who exhibit externalizing symptoms are often not bothered by their expression as much as their parents (Ooi et al., 2017).

The number of misophonia triggers was also significantly associated with QoL, where youth with more misophonia triggers reported lower QoL. This is not surprising, as youth with more triggers may experience distress and frustration across multiple environments. These youth may be hypervigilant regarding possible future triggers, which may be associated with poorer QoL, as has been shown in traumatic injury survivors (Forbes et al., 2019). The number of triggers may also reflect an important dimension of misophonia severity. Number of misophonia responses, such as experienced emotion (e.g., anger) or physical response (e.g., verbal aggression), was not associated with QoL, which suggests that amount of response to misophonia triggers is less relevant to QoL than the frequency of misophonic events. Although it was not collected as part of the current study, the severity of response to misophonia triggers, as well as the frequency of exposure to misophonia triggers, might also be strongly correlated with QoL along with the number of responses to misophonia triggers.

There are several study limitations. First, although QoL is comprised of multiple dimensions and can be evaluated subjectively and objectively (Felce & Perry, 1995), we used a single measure of QoL, which focused on self-reported life enjoyment and satisfaction due to the scope of the current study. Second, we recruited participants mostly from online resources due to challenges in reaching this unique population, and our sample was predominantly white and non-Hispanic. Third, the current study used a cross-sectional design. Hence, we only examined QoL at a single time point, and all of our analyses were correlational, which means our results do not imply causation between variables.. Fourth, we only analyzed QoL in the children and adolescents with misophonia and not their family members. Despite the minimal amount of systematic research on impact of misophonia on families, clinical anecdotes suggest that misophonia greatly disrupts families’ lives as well. Fifth, the MAI included an incomplete list of potential misophonia triggers, and its psychometric properties have not been reported yet. Lastly, we did not collect data on the frequency of exposure to misophonia triggers or the duration of experiencing misophonia triggers in a day, which may limit our understanding of the impact of misophonia on QoL.

Hence, further research is warranted to address these limitations and expand on our results. That is, future studies should examine objective markers of QoL among youth with misophonia, recruit a more racially and ethnically diverse sample, collect longitudinal data and study how QoL shifts over time as misophonia symptoms progress or diminish, assess QoL more broadly among family members of youth with misophonia as well as in their close network, and utilize various dimensions of misophonia impact to examine its effect on QoL in a more comprehensive way. Additionally, developmentally-appropriate measures that assess the symptoms and impact of misophonia should be considered in future studies (e.g., Misophonia Impact Questionnaire (Aazh et al., n.d), MisoQuest (Siepsiak et al., 2020b), Duke Misophonia Questionnaire (Siepsiak et al., 2020b) were developed since the present study was concluded).

This study highlights that QoL is attenuated in adolescents with misophonia and has a strong association with internalizing symptoms and pessimism about one’s misophonia symptoms. The group difference in QoL between our sample and the general US youth sample is concerning and warrants further investigation. These data also highlight the need for comprehensive assessment of QoL among youth with misophonia, particularly as they age, in order to better measure and understand the impact of misophonia in this population. Further, interventions need to be developed that address both symptom severity and life enjoyment and satisfaction, especially given that parents of youth with misophonia are dissatisfied with most of the currently available interventions (Smith et al., 2022). Along with reducing symptoms, promoting general well-being of youth should be another important goal of treatment. Targeted interventions that include a wellness component have demonstrated significant promise in other conditions such as generalized anxiety disorder, chronic tic disorder, and comorbid depression and acute coronary syndrome (Fava & Tomba, 2009; McGuire et al., 2015; Rafanelli et al., 2020). As misophonia is characterized by severe distress and high emotional burden similar to these conditions, this treatment approach could not only address the core symptom but also foster a value-filled life that effectively improves QoL while minimizing opportunities for misophonia to adversely impact life.