Life Satisfaction, Global Health and Mood in Prader–Willi Syndrome: Use of PROMIS and Glasgow Depression Scales

ABSTRACT

Background

Prader–Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS.

Methods

Parents completed three validated assessments, the Glasgow Depression Scale‐Carer Supplement (GDS‐CS), PROMIS Parent‐Proxy Global Health 7 and PROMIS Parent‐Proxy Life Satisfaction 8b, for 527 individuals with PWS.

Results

Mean GDS‐CS score was 8.29 (SD 4.55), and 18% had a score of 13+, reflective of possible depression. Mean PROMIS Global Health and Life Satisfaction scores were 41.46 (SD 8.48) and 43.39 (SD 8.48), respectively, and are lower compared to the general population. Both PROMIS scales worsened with age, and scores on the PROMIS and GDS‐CS were associated with parent reports of depression for the person with PWS.

Conclusions

These validated instruments may be useful for assessing mood and QOL in PWS.

Summary.

• Individuals with PWS have higher depression scores, lower global health and lower life satisfaction scores compared to the general population.

• Depression scores increased with age; global health and life satisfaction scores tended to decrease with age in PWS.

• Depression, global health and life satisfaction scores are associated with parent reports of depression for individuals with PWS.

• Three different validated parent‐reported questionnaires can be used to assess mood and quality of life for individuals with PWS.

1. Introduction

Prader–Willi syndrome (PWS) is a rare neurodevelopmental disorder affecting 1 in 10,000 to 30,000 individuals (Cassidy et al. 2012; Angulo et al. 2015). PWS is caused by a loss of paternally expressed genes on chromosome 15q11.2‐q13, due to a deletion on the paternally derived chromosome 15 (~60% of individuals), maternal uniparental disomy (UPD, ~35% of individuals) or an imprinting defect (3%–5%) (Madeo et al. 2024). This complex condition presents a spectrum of challenges, beginning with hypotonia and failure to thrive in infancy, followed by the onset of hyperphagia (excessive appetite with a lack of satiety) during childhood, which can be extremely difficult to manage. The relentless drive to consume food, if left uncontrolled, can lead to severe obesity and associated health complications. Furthermore, individuals with PWS commonly experience developmental delays, mild to moderate intellectual disability, and a range of behavioural and psychiatric issues. These include hyperphagia‐driven behaviours such as food hoarding and foraging, alongside significant mood challenges, anxiousness, aggression, psychosis and obsessive‐compulsive behaviours (Bohonowych et al. 2019). Managing PWS requires food restrictions and ‘food security’ avoiding many social situations that have food, and keeping strict schedules and routines to minimise events that may trigger behavioural issues like temper outbursts (Matesevac et al. 2023). These approaches to trying to manage the symptoms of PWS often limit opportunities for social interaction and connection, which can lead to feelings of social isolation and lowered mood. Previous research in this area has shown a reduced quality of life (QOL) in both children and adults with PWS. Caliandro et al. (2007) found significant impairments in both physical and emotional aspects of QOL compared to controls, especially for those individuals with PWS aged 14 and older. Another study conducted in Italy found that QOL and psychological well‐being were lower in their sample of individuals with PWS compared to age‐matched healthy individuals (Guerrini Usubini et al. 2025). Finally, Wilson et al. (2016) showed that both parents and their children with PWS reported lower QOL compared to a control group of age‐matched children with obesity.

Recognising the potential impacts of PWS on the physical and mental well‐being of individuals with the syndrome, the current study aimed to characterise symptoms of depressed mood and assess the QOL and global health among a large sample of individuals with PWS, using validated assessment tools. Measures to assess mood and QOL used in the general population are often self‐reported, which can be problematic for those with PWS, given the intellectual disability and deficits in social cognition and self‐awareness characteristic of the syndrome (Dykens et al. 2022; Cobo et al. 2021). Drawing from established literature and given well‐known challenges of self‐report in the PWS population (Dykens et al. 2022; Schwartz et al. 2021), we identified three caregiver‐reported measures, the Glasgow Depression Scale‐Carer Version (GDS‐CS) (Cuthill et al. 2003), and two PROMIS scales (Patient Reported Outcomes Measurement Information System) (Forrest et al. 2014, 2018) as validated assessment tools with good potential for capturing mood and QOL concerns in individuals with PWS.

The primary research questions for this study were: (1) how do validated measures of mood and QOL perform in a large registry sample of individuals with PWS, (2) what demographic and genetic factors are associated with lower mood and QOL for individuals with PWS, and (3) how do these findings compare with other samples of individuals with chronic illness and/or intellectual disability.

To address these research questions, we administered the GDS‐CS and 2 PROMIS scales to parents of a large cohort of individuals with PWS through the Global PWS Registry (Bohonowych et al. 2019) to gain a deeper understanding of the natural history of PWS and to help identify factors associated with mood and QOL. We also compared the PWS cohort to other chronically ill and/or intellectually disabled populations to gain insights into the unique challenges faced by individuals with PWS. We anticipate that establishing a baseline understanding of how these instruments perform in the PWS population will inform future research endeavours and clinical management strategies for this complex disorder.

2. Methods

To evaluate mood and QOL assessment tools in the PWS population, the PROMIS Parent Proxy Global Health 7, PROMIS Parent Proxy v1.0‐Life Satisfaction‐Short 8b and the GGDS‐CS were included in the Global PWS Registry, managed by the Foundation for Prader‐Willi Research (Bohonowych et al. 2019). The protocol, consent and all surveys for the Global PWS Registry are approved by the North Star Review Board (NSRB), project #NB100050. NSRB‐approved recruitment materials were sent to Registry participants and shared with the broader PWS community through social media channels, emails and newsletters. Surveys were available to parents of individuals with PWS aged 5 years and older, and survey submissions for this study were completed from July 2022 to June 2023.

The Glasgow Depression Scale‐Learning Disability (GDS‐LD) was developed for individuals with learning disability, and the supplementary scale (GDS‐CS) was developed as a caregiver‐reported tool to assess mood symptoms in a person with intellectual disability (Cuthill et al. 2003). The GDS‐LD has demonstrated good psychometric properties, significantly correlates with the Beck Depression Inventory in initial psychometric analysis, and previous studies have been used to differentiate depression and non‐depression groups (Cuthill et al. 2003). The Carer Supplement (GDS‐CS) has excellent reliability (r = 0.98) and internal consistency (α = 0.88) and has very high inter‐test reliability with the self‐report GDS‐LD (r = 0.93) (Cuthill et al. 2003). The GDS‐CS consists of 16 items assessing observable symptoms of depression, and potential scores can range from 0 to 32, with higher scores indicating greater symptoms of depression. This questionnaire was validated for adults with intellectual disability (Cuthill et al. 2003).

Cuthill et al. (2003) found that a score of 13 or greater correctly identified 96% of individuals diagnosed with a depressive disorder with 90% specificity on the self‐report GDS‐LD measure. This score has been used as a cut‐off to identify individuals for further mental health evaluation who may need treatment. However, these analyses were not reported for the GDS‐Carer Supplement. Given the strong psychometric properties of the Carer Supplement and its correlation with the GDS‐LD self‐report version (r = 0.93) (Cuthill et al. 2003), we elected to employ a cut‐off score of 13 on the GDS‐CS as indicating concerning symptoms in our study sample.

The PROMIS Parent Proxy Global Health 7 is a brief seven‐question caregiver‐reported measure reflecting the overall health and well‐being of a loved one (Forrest et al. 2014). The PROMIS Parent Proxy v1.0‐Life Satisfaction‐Short 8b is a brief eight‐question caregiver‐reported measure reflecting the overall QOL and life satisfaction of a loved one (Forrest et al. 2018). Both of these Parent Proxy PROMIS measures are intended for, among other indications, ‘people with cognitive or communication deficits’ (HealthMeasures 2024). For analysis, both PROMIS scales had their raw scores rescaled into a T‐score. The T‐score rescales the raw score into a standardised score with a mean of 50 and a standard deviation (SD) of 10 (Forrest et al. 2014, 2018). Higher scores indicate a better overall health perception, QOL and life satisfaction. For the Parent Proxy Global Health 7 form, the internal consistency alpha was 0.84, and the test–retest reliability was 0.74 (Forrest et al. 2014). For the Parent Proxy Life Satisfaction‐8b form, the range in T‐scores was 4.5 SDs, the marginal reliability was 0.91, the test–retest reliability was 0.81 and the correlation between the child‐report and parent‐proxy report for this form was 0.68 (Forrest et al. 2018).

Although the PROMIS Parent Proxy Global Health 7 and Life Satisfaction scales are validated for individuals under 18 years old, parents of individuals with PWS over the age of 18 also completed the PROMIS scales, as adults with PWS have limited independence and typically live with and/or are closely monitored by parents or other caregivers for their entire adult life.

Additionally, some data from other parent surveys in the Global PWS Registry were included in the study and analysis. These surveys included information on parent‐reported demographic data, previous or current experience of depression in their loved one with PWS, and if the person with PWS had ever received a formal diagnosis of depression by a health care provider. This information from the registry was used to analyse relationships with the PROMIS and GDS‐CS assessments. Information on depression symptoms and depression diagnoses for the individual with PWS were included in the analysis only when the information was reported in the registry before completion of the PROMIS/Glasgow assessments. In addition, only data from parents who completed both PROMIS scales and the GDS within 24 h of each other were included in the analysis, resulting in a total participant population of 527 individuals. Analysis of demographic information includes proportions and means with SD. Two‐sample independent t‐tests (gender and PWS living status), analysis of variance (ANOVA) tests with Tukey HSD post hoc tests (age category, PWS genetic subtype, depression symptoms and depression diagnosis), and chi‐squared tests (all analyses with dichotomous GDS‐CS) were used for bivariate analysis, and a p value of < 0.05 was considered for statistical significance.

3. Results

This study includes data on 527 individuals with PWS for whom the parent completed both PROMIS scales and the GDS‐CS within a 24‐h period. The demographics of the individuals with PWS are shown in Table 1. Individuals ranged from 5 to 65 years of age, and they were slightly more likely to be female. Approximately half of the individuals with PWS were over the age of 18. The vast majority lived at home with their parent(s), including 71.8% of individuals aged 18 or older. The genetic subtype distribution was similar to the composition in the Global PWS Registry, with slightly more than half (53.1%) reporting a genetic subtype of deletion, approximately a third reporting PWS due to UPD, and the remainder with imprinting defect, other or unknown.

TABLE 1.

Demographics of individuals with PWS.

Demographics, N (%)	Total, PWS participants (N = 527)
Gender
Male	251 (47.7%)
Female	275 (52.3%)
Age category
5–11	120 (22.8%)
12–17	134 (25.4%)
18+	273 (51.8%)
Age range	5–65
PWS genetic subtype
Deletion	279 (53.1%)
Uniparental disomy (UPD)	180 (34.3%)
Imprinting defect	17 (3.2%)
Translocation	4 (0.8%)
Other	3 (0.6%)
Do not know	42 (8.0%)
PWS living situation
Living with the parent	446 (84.6%)
Not living with the parent	81 (15.4%)

Table 2 shows the scores for the GDS‐CS and PROMIS scales, as reported by the parent. The mean GDS‐CS score for individuals with PWS in this analysis was 8.29 (SD 4.55). Previous studies have suggested that a score of 13 and above on the GDS‐LD indicates depressive symptoms that warrant further assessment (Cuthill et al. 2003) and, in this sample, 18% were rated as having scores in this range on the GDS‐CS. The mean PROMIS Global Health score was 41.46 (SD 8.48), and the mean PROMIS Life Satisfaction score was 43.39 (SD 8.48) (Table 2). In a separate survey in the Global PWS Registry on mental health history for the person with PWS, parents were asked if their loved one had ever experienced depression, and if so, if they had received a formal diagnosis of depression from a health care provider. Of the 469 parents who had completed the mental health survey in the registry before the PROMIS/Glasgow surveys, 23% (108/469) reported that their loved one with PWS had experienced depression, and of those individuals, 66.7% (72/108) had received a formal diagnosis of depression by a medical professional.

TABLE 2.

Parent reported GDS‐CS scores, PROMIS scores and depression symptoms in individuals with PWS.

GDS‐CS total score, mean ± SD	8.29 ± 4.55
Range of GDS‐SC total score	0–24
PROMIS Global Health 7, mean ± SD	41.46 ± 8.15
Range	19.4–66.1
PROMIS Life Satisfaction 8b, mean ± SD	43.39 ± 8.48
Range	17.1–61.5
Depression symptoms
Yes	108 (23.0%)
No	334 (71.2%)
Do not know	27 (5.8%)
If yes for depression symptoms (N = 108)
Diagnosis of depression	72 (66.7%)
No diagnosis of depression	34 (31.5%)
Do not know	1 (0.9%)

Note: General health and life satisfaction were assessed with the PROMIS Paediatric Parent‐Proxy Global Health and Life Satisfaction measures, which are scored on the PROMIS T‐metric (mean = 50; SD = 10).

There was no statistically significant difference in mean total GDS‐CS score by gender, age category, genetic subtype or PWS living status (Table 3). However, there was a statistically significant difference in mean total GDS‐CS score by reported depression in the registry (p < 0.0001). Post hoc comparisons indicated that individuals with PWS with no reported depression had lower mean total GDS‐CS scores than those with depression (p < 0.0001) and those whose parents indicated they ‘do not know’ if the individual experienced depression (p = 0.02).

TABLE 3.

Bivariate analysis of sociodemographic and scales.

Bivariate analysis of sociodemographic characteristics and mean GDS‐CS, PROMIS Global Health 7 and PROMIS Life Satisfaction total score (all participants)
Characteristic, N (%)	Mean GDS‐CS total score ± SD	Mean PROMIS Global Health 7 ± SD	Mean PROMIS Life Satisfaction ± SD
Gender
Male, 251 (47.7%)	8.5 ± 4.5	41.7 ± 8.3	43.8 ± 8.7
Female, 275 (52.3%)	8.1 ± 4.6	41.2 ± 8.1	43.0 ± 8.3
Age category^^**
5–11, 120 (22.8%)	7.6 ± 3.8	44.6 ± 7.8	47.2 ± 8.3
12–17, 134 (25.4%)	8.3 ± 4.6	41.2 ± 7.2	42.6 ± 7.4
18+, 273 (51.8%)	8.6 ± 4.8	40.2 ± 8.4	42.1 ± 8.6
PWS genetic subtype
Deletion, 279 (53.1%)	7.9 ± 4.2	41.9 ± 7.9	44.3 ± 8.1
Uniparental disomy (UPD), 180 (34.3%)	8.7 ± 4.8	41.2 ± 8.7	42.2 ± 8.9
Imprinting defect, 17 (3.2%)	9.4 ± 5.5	39.2 ± 10.2	40 ± 6.2
Translocation, 4 (0.8%)	5.8 ± 1.9	45.1 ± 5.7	47.5 ± 9.4
Other, 3 (0.6%)	7.7 ± 6.5	41.8 ± 6.2	41.6 ± 8.4
Do not know, 42 (8.0%)	8.9 ± 5.3	40.8 ± 7.1	43.6 ± 9
PWS living situation
Living with the parent, 446 (84.6%)	8.2 ± 4.5	41.7 ± 8.0	43.6 ± 8.2
Not living with the parent, 81 (15.4%)	8.8 ± 4.7	39.9 ± 9.0	42.1 ± 9.8
Depression symptoms~~^^**
Yes, 131 (25.1%)	11.1 ± 5.1	37.3 ± 8.7	39.2 ± 8.3
No, 362 (69.2%)	7.2 ± 3.9	43.2 ± 7.4	45.2 ± 8.1
Do not know, 30 (5.7%)	9.4 ± 3.3	39.9 ± 9.2	41.5 ± 8.2
Depression diagnosis if yes for depression symptoms
Yes, 84 (64.1%)	11.4 ± 5.3	36.9 ± 9.2	38.3 ± 8.1
No, 44 (33.6%)	10.4 ± 4.8	38 ± 7.9	41.1 ± 8.67
Do not know, 2 (1.53%)	6 ± 0	37.9 ± 0	33.7 ± 0

Note: Glasgow: ~~p < 0.0001, PROMIS Global: ^^p < 0.0001, PROMIS Life: **p < 0.0001. Bivariate analysis was performed using two‐sample t‐tests and ANOVA tests with Tukey HST post hoc tests.

We also assessed those who had a GDS‐CS score of < 13 compared to those who had a score of 13 and above, as a score of 13 and above was employed to indicate potentially clinically significant depression symptoms in this sample. There were no significant associations between GDS‐CS dichotomous score and gender, age category, genetic subtype, living status or formal depression diagnosis. However, there was a significant association by reported depression (39% of those with reported depression in the registry had a GDS‐CS score of ≥ 13 compared to 10% of those without reported depression and 20% of those whose parents didn't know if depression was present, X ² = 55.39, p < 0.00001). We also looked at the dichotomous GDS‐CS score and the two PROMIS scales. Those with a GDS‐CS score of 13+ had statistically lower PROMIS Global Health 7 and PROMIS Life Satisfaction scores than those with a GDS‐CS score of < 13 (both comparisons p < 0.0001).

There was no statistically significant difference in the mean PROMIS Global Health 7 total score by gender, genetic subtype, PWS living status or depression diagnosis. However, there was a statistically significant difference in mean PROMIS Global Health 7 total score by age category (p < 0.0001), and the post hoc tests showed the 5‐ to 11‐year‐olds had a higher PROMIS Global Health 7 score than both the 12‐ to 17‐year‐olds (p = 0.0021) and the 18+‐year‐olds (p < 0.0001). There was also a statistically significant difference in mean PROMIS Global Health 7 total score by reported depression in the person with PWS (p < 0.0001), and the post hoc comparison showed those who had depression had a lower mean PROMIS Global Health 7 score than those with no reported depression (p < 0.0001).

For the PROMIS Life Satisfaction scale, there was no statistically significant difference in mean total score by gender, genetic subtype, PWS living status and depression diagnosis. There was a statistically significant difference in the mean PROMIS Life Satisfaction total score by age category (p < 0.0001). The post hoc comparisons showed that the 5‐ to 11‐year‐olds had a higher PROMIS Life Satisfaction score than both the 12‐ to 17‐year‐olds (p < 0.0001) and the 18+‐year‐olds (p < 0.0001). There was also a statistically significant difference in the mean PROMIS Life Satisfaction total score by reported depression (p < 0.0001). Per the post hoc tests, those whose parents did not report depression in the registry had a higher Life Satisfaction score than those with depression (p < 0.0001).

4. Discussion

PWS is characterised by a challenging behaviour profile, poor social cognition and health and behaviour challenges related to hyperphagia. To control food intake and reduce the risk of the individual with PWS developing morbid obesity, families often must restrict access to food in the home and limit social and community‐based activities that do not provide food security for the individual with PWS. The current study aimed to investigate the impact of PWS on individuals with the syndrome by evaluating three well‐characterised caregiver‐reported measures of mood, health and QOL. Whereas a few PWS‐specific outcome measures have been designed to assess PWS‐specific behaviours, for example, the Hyperphagia Questionnaire for Clinical Trials (Matesevac et al. 2023; Fehnel et al. 2015), the PWS Anxiousness and Distress Questionnaire (Cotter et al. 2023) and PWS Profile (Dykens et al. 2024), there has been relatively little data on how general measures of mood and QOL behave in a large PWS cohort. The current study evaluated three well‐validated measures using the Global PWS Registry platform, which includes a substantial number of participants.

Overall, we found that individuals with PWS in this cohort had elevated depression scores (via the GDS‐CS) and lower global health and life satisfaction scores on the PROMIS scales compared to population norms. The results of this study are consistent with existing literature in PWS indicating significant challenges with mood and health (Cassidy et al. 2012; Schwartz et al. 2016; Aman et al. 2024). Eighteen percent of the individuals in this study obtained a score of 13 or above on the GDS‐CS depression scale, which may reflect concerning depressive symptoms that warrant further assessment. Individuals with PWS with high GDS‐CS scores were also found to have significantly lower Global Health and Life Satisfaction scores. Additionally, depression in the individual with PWS as reported in the Global PWS Registry was significantly associated with all three validated scales employed in the current study. Specifically, parents who reported depression symptoms in their loved one with PWS also rated them significantly higher on the GDS‐CS scale, and significantly lower on both the PROMIS Global Health 7 and the Life Satisfaction scales than those who did not have depression. This is consistent with research on chronic conditions and depression within the ECHO research programme (Schuchard et al. 2022) and among adults with intellectual disability in the Rocky Mountain area of the United States (Mileviciute and Hartley 2015).

The individuals with PWS in the current study also had significantly higher mean GDS‐CS scores compared to a cohort of adults in Germany with general intellectual disabilities (Müller et al. 2024). In that study of 64 adults with intellectual disability in Germany, the GDS‐CS mean total score was 6.53 (SD 4.23) (Müller et al. 2024). When we compared it to that cohort (N = 64), the adult participants with PWS in this current PWS study (N = 273) had a significantly higher GDS‐CS score (6.53 vs. 8.56, p = 0.002). Another study examined the PROMIS scales for 251 paediatric participants with a chronic condition within the NIH‐funded ‘Environmental Influences on Child Health Outcomes’ (ECHO) research programme. The individuals with PWS under the age of 18 in the current cohort (N = 254) had significantly lower mean PROMIS Global Health scores (42.78 [SD 7.68] vs. 50.89 [SD 9.32], p < 0.0001) and Life Satisfaction scores (44.77 [SD 8.17] vs. 53.29 [SD 7.33], p < 0.0001) (Blackwell et al. 2019).

The distribution of PROMIS scores for the scales used in this study revealed that for both those below 18 years old and for the entire sample (which included adults with PWS), the mean for individuals with PWS fell in the low 40s, showing a poorer global health score compared to the general population (a comparative mean of 50) and to a chronically ill paediatric sample (Blackwell et al. 2019). Additionally, the current study showed that both global health and life satisfaction seem to worsen as those with PWS age. The decline in life satisfaction and health seen with age in PWS has been shown in other studies as well (Sinnema et al. 2012) and may be explained by a combination of physical, psychological and social factors such as progressive health complications (obesity, diabetes and cardiovascular) (Hedgeman et al. 2017), chronic mental health issues that are not well treated, greater social isolation and additional losses to independence and achievement related to missing out on many of the milestones of typical adulthood. It is possible that with improved weight control, use of growth hormone as appropriate (Höybye et al. 2021) and treatment of mental health conditions, this decline may be potentially mitigated in PWS. This is a topic for future studies.

Interestingly, there were no significant differences in GDS‐CS scores based on age group or genetic subtype, although there was a trend towards higher depression scores in individuals with UPD and imprinting subtypes. Individuals with UPD and imprinting subtypes are reported to have in general more struggles with psychiatric symptoms (Aman et al. 2024), which may contribute to parents' reports of somewhat higher depressed mood scores. Additionally, no significant differences were observed in gender or living situation on either of the PROMIS scales, although there was a trend towards lower global health scores for those living away from their parents, which could be attributed to increased challenges in care or less optimal care provision. This trend is interesting and may warrant further exploration regarding the variety of factors that can influence the health and well‐being of individuals living away from home, such as consistency of care and whether the setting is specific for PWS (Mastey et al. 2024).

A limitation of this study is that it relies solely on parents' reports of mood and QOL for individuals with PWS. However, the use of parent‐reported outcomes is common practice in the PWS field, given the well‐known challenges with self‐reporting in the PWS population. It should be noted that one previous study compared child and parent reports of QOL in PWS and found that parents rated their child's QOL lower than their child did. It may be that parent ratings of QOL are somewhat more realistic given their perspective as a parent and as an adult. Children with PWS often live with their families in highly controlled (food and social) environments and may benefit from the protective frameworks that families offer. Thus, especially children with PWS may have a somewhat limited awareness or clear understanding of the consequences of their condition. However, further research is warranted, focused on developing effective strategies for assessing self‐report of mood symptoms and QOL from individuals with the syndrome, possibly along with informant ratings. Another limitation is having parents rate mood and QOL for individuals with PWS who do not live at home. It should be noted that this was a minority (15.4%) of the sample. In the current study, there were no significant differences in mood ratings on the GDS‐CS or the PROMIS scale ratings for those living with a parent vs. those living away from the parent.

The validated instruments employed here hold promise for further expanding the knowledge base regarding the natural history of PWS, advancing the understanding of the syndrome's complexities and informing future research directions as well as clinical management strategies. The findings of the study also further highlight the need to address depression symptoms and issues related to QOL for individuals with PWS, particularly in adulthood.

Finally, there is hope for improved QOL for individuals with PWS with the development of new medications that may help with hyperphagia and weight control (Miller et al. 2023; Tan et al. 2020). Additionally, non‐medication approaches can improve QOL for those with PWS, such as behavioural, psychological and environmental interventions aimed at enhancing social and emotional function and overall health status (Guerrini Usubini et al. 2025; Mastey et al. 2024; Dykens, Roof, Hunt‐Hawkins, et al. 2022; Dimitropoulos et al. 2022). Combining pharmacological treatments with psychological support and structured environments may lead to improvements in QOL and health outcomes. Finally, given the active landscape of therapeutic development for PWS, the validated measures used in the current study may be useful in future interventional studies to determine the impact of novel therapies on mood and QOL, potentially demonstrating wider‐ranging effects of pharmaceutical treatments beyond hyperphagia.

Author Contributions

L.S., C.J.V.‐D., T.V.S. and J.E.B. contributed to the design of the study. L.M. and J.E.B. managed the database and data collection for the study. C.J.V.‐D. and J.E.B. conducted the data analyses. L.S. took the lead in preparing initial drafts of the manuscript, which were circulated for discussion and revision. All of the authors participated in the writing and editing of the manuscript.

Ethics Statement

The study was conducted in accordance with the Declaration of Helsinki and approved by the North Star Review Board (NB100032).

Consent

All legal guardians/legally authorised representatives of the person with PWS completed an informed consent in order to complete surveys in the Global PWS Registry.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data presented in this study are available from the corresponding author on reasonable request.