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AIM: To identify factors associated with quality of life (QoL) in children with intellectual disability. We aimed to identify patterns of association not observable in previous hypothesis-driven regression modelling using the same data set from a cross-sectional observational study. METHOD: A questionnaire was completed by 442 caregivers of children with confirmed intellectual disability and a diagnosis of autism spectrum disorder, cerebral palsy, Down syndrome, or Rett syndrome. The Quality of Life Inventory-Disability (QI-Disability) questionnaire was used to assess child QoL. Independent variables described the child's health, functional abilities, community participation, and sociodemographics. The R package rpart was used to build the regression trees. RESULTS: The mean total QI-Disability score was 69.2 out of a maximum 100. The subgroup with the lowest QoL scores comprised children with a high degree of daytime sleepiness (n=74, mean 57.5) while the subgroup with the highest QoL scores (n=91, mean 80.3) comprised children with little daytime sleepiness who participated more frequently in community activities and displayed good eye contact while listening. INTERPRETATION: Regression tree analysis provides insights into the relative importance of associated factors. Sleep problems and community participation were more important than functional abilities in accounting for differences in QoL. WHAT THIS PAPER ADDS: A hypothesis-free regression tree analysis enables examination of multiple factors potentially influencing quality of life (QoL) in children with intellectual disability. Functional abilities were less strongly associated with QoL than sleep problems and community participation.

BACKGROUND: Many children with intellectual disability live with medical comorbidities. This study examined the impacts of comorbidities on quality of life (QOL) of children with intellectual disabilities and whether impacts varied with caregiver perceptions that medical needs had been met. METHODS: Primary caregivers of 447 children (aged 5-19 years) with an intellectual disability reported on their child's medical comorbidities and the extent to which they perceived their child's medical needs had been met in a cross-sectional observational study. The Quality of Life Inventory-Disability was used to measure QOL on a 100-point scale. Linear regression models including interaction terms were used to evaluate their associations. RESULTS: Parent-reported recurrent child pain (-4.97, 95% CI -8.21, -1.72), night-time sleep disturbances (-4.98, 95% CI -7.23, -2.73), daytime somnolence (-8.71, 95% CI -11.30, -2.73), seizures that occurred at least weekly (-7.59, 95% CI -13.50, -1.68) and conservatively managed severe scoliosis (-7.39, 95% CI -12.97, -1.81) were negatively associated with child QOL. Despite the majority of parents (~70%) perceiving that their child's medical needs had been met to a great extent, this did not significantly moderate the association between any comorbidities and QOL. CONCLUSIONS: Comorbidities were common and had marked associations with QOL. Evaluation and management of pain and sleep disturbance continue to be high priorities in improving QOL of young people with intellectual disabilities. Further research on the optimal methods of managing these comorbidities is warranted.

AIMS: To investigate associations between functioning, community participation, and quality of life (QoL) and identify whether participation mediates the effects of functioning on QoL. METHOD: The caregivers of 435 children (211 females, 224 males; mean age 12y; SD 3y 11mo; age range 5-18y) with intellectual disability and autism spectrum disorder, cerebral palsy, Down syndrome, or Rett syndrome reported on their child's functioning (dependence for managing personal needs, mobility, communication, eye contact when speaking), frequency of participation, and QoL. Linear regression and mediation analyses were used to evaluate the relationships between child functioning, participation, and QoL. RESULTS: Children with greater dependency for managing personal needs and limited eye contact when speaking experienced poorer QoL. Less impaired functioning was associated with more frequent participation, which, in turn, was associated with a 3-point gain in QoL for each additional point in frequency of participation (coefficient=2.67, 95% confidence interval 1.56-3.78). The effect of impaired functioning on QoL was partially mediated by participation in children with greater dependency in managing personal needs and those with mildly impaired communication. INTERPRETATION: Greater levels of impairments with poorer functioning, notably a high level of dependence, were associated with poorer QoL. Poorer QoL can be partly explained by less frequent community participation.

BACKGROUND: Despite evidence for high levels of mental health problems in mothers of children with a disability and the potential impact on caring for their child, very little is known about mothers' experience in accessing professional mental health support. This study aimed to explore mothers' views and experience on seeking help for their mental health. METHODS: Semi-structured interviews were conducted with 25 mothers of children with a disability. Thematic analysis was completed. RESULTS: Mothers experienced significant barriers when accesing support at the personal, professional and system level. Personal barriers included the need for competency and stigma about mental illness: professional barriers included the lack of discussions about mental health and interpersonal factors that hindered disclosure. System barriers included feeling invisible to the health services, paediatric care focusing on the child rather than the family and limitations to the type of mental health support available. CONCLUSION: Mothers perceive substantial barriers in accessing support for their mental health. It is important that strategies are designed so the importance of mentally healthy mothers is understood and to normalize a need for assistance when you are the mother of a child with additional support needs. Strategies are also needed to encourage mothers to seek help and to assist professionals having discussions about maternal wellbeing. Improvements are also required in the accessibility of service supports.

The delivery of family-centred practice (FCP) within Early Childhood Intervention Services (ECISs) for young children with a disability or development delay conceptualises that children's learning environments, parenting, family and community supports intersect to have the greatest impact on the developing child. The transdisciplinary key worker model is considered a best-practice approach within ECISs whereby staff work collaboratively across disciplinary boundaries to plan and implement services for children and their families. Research suggests families who have a key worker have better relationships with services, fewer unmet needs, better morale, more information about services, higher parental satisfaction and more parental involvement than those not receiving this service. Using a phenomenological qualitative design this study sought to understand transdisciplinary key workers' perspectives regarding the strengths and challenges to undertaking their role in providing services to children and families accessing an ECIS at a major disability service organisation, in light of the changing policy reform during the roll out of the National Disability Insurance Scheme in Australia. Purposive sampling was used to recruit key workers (n = 13) to participate in semi-structured interviews during 2015. Data were analysed using an inductive, thematic approach. Results revealed four main themes that impact on the effectiveness of key workers' service provision. These are broadly categorised as (a) Engagement with the workplace, (b) Engagement with clients, (c) Professional capacity and (d) Staff Wellbeing. The findings aligned with previous studies identifying sources of support and stress for disability services staff. They also provided new insights into key workers' lack of confidence in addressing parental mental health issues, despite operating under a family-centred approach. These findings informed the development of an intervention trial and evaluation to improve

Background: Many children with intellectual disability live with medical comorbidities. This study examined the impacts of comorbidities on quality of life (QOL) of children with intellectual disabilities and whether impacts varied with caregiver perceptions that medical needs had been met. Methods: Primary caregivers of 447 children (aged 5–19 years) with an intellectual disability reported on their child's medical comorbidities and the extent to which they perceived their child's medical needs had been met in a cross-sectional observational study. The Quality of Life Inventory-Disability was used to measure QOL on a 100-point scale. Linear regression models including interaction terms were used to evaluate their associations. Results: Parent-reported recurrent child pain (−4.97, 95% CI −8.21, −1.72), night-time sleep disturbances (−4.98, 95% CI −7.23, −2.73), daytime somnolence (−8.71, 95% CI −11.30, −2.73), seizures that occurred at least weekly (−7.59, 95% CI −13.50, −1.68) and conservatively managed severe scoliosis (−7.39, 95% CI −12.97, −1.81) were negatively associated with child QOL. Despite the majority of parents (~70%) perceiving that their child's medical needs had been met to a great extent, this did not significantly moderate the association between any comorbidities and QOL. Conclusions: Comorbidities were common and had marked associations with QOL. Evaluation and management of pain and sleep disturbance continue to be high priorities in improving QOL of young people with intellectual disabilities. Further research on the optimal methods of managing these comorbidities is warranted.

BACKGROUND: There is a lack of population-based studies exploring the communicative behaviours of minimally verbal children with cerebral palsy (CP), with factors associated with superior and poorer communication outcomes unknown. This study aimed to examine the communication behaviours of minimally verbal children with CP recruited from a representative community sample and to identify factors associated with communication outcomes. METHODS: Twenty minimally verbal children aged 5-6 years, recruited through the Victorian Cerebral Palsy Register, completed the Communication and Symbolic Behaviour Scales-Developmental Profile (CSBS-DP). Linear regressions examined child-related and environmental factors associated with communication outcomes. RESULTS: CSBS-DP total raw scores ranged from 0 to 113. Strengths were the use of conventional gestures and understanding of language. Challenges were noted in using sequential action schemes during play. Communication typically served to regulate the behaviour of others. All participants demonstrated reduced functional communication (Communication Function Classification System levels III-IV). In the multivariable regression model adjusted for cognition, poorer communication skills were associated with Manual Ability Classification System levels IV-V (P = 0.004). CONCLUSIONS: Although some children with CP who are minimally verbal use a variety of communication functions, significant functional limitations may be apparent. Severe upper limb impairment may provide an early indication of greater communication difficulties.

AIM: To: (1) investigate the relationship between upper-limb impairment and health-related quality of life (HRQoL) for children with cerebral palsy and (2) develop a mapping algorithm from the Cerebral Palsy Quality of Life Questionnaire for Children (CPQoL-Child) onto the Child Health Utility 9D (CHU9D) measure. METHOD: The associations between physical and upper-limb classifications and HRQoL of 76 children (40 females, 36 males) aged 6 to 15 years (mean age 9 years 7 months [SD 3y]) were assessed. Five statistical techniques were developed and tested, which predicted the CHU9D scores from the CPQoL-Child total/domain scores, age, and sex. RESULTS: Most participants had mild impairments. The Manual Ability Classification System (MACS) level was significantly negatively correlated with CHU9D and CPQoL-Child (r=-0.388 and r=-0.464 respectively). There was a negative correlation between the Neurological Hand Deformity Classification (NHDC) and CPQoL-Child (r=-0.476, p<0.05). The generalized linear model with participation, pain domain, and age had the highest predictive accuracy. INTERPRETATION: The weak negative correlations between classification levels and HRQoL measures may be explained by the restricted range of impairment levels of the participants. The MACS and NHDC explained the impact of upper-limb impairment on HRQoL better than the other classifications. The generalized linear model with participation, pain, and age is the suggested mapping algorithm. The suggested mapping algorithm will facilitate the use of CPQoL-Child for economic evaluation and can be used to conduct cost-utility analyses. WHAT THIS PAPER ADDS: The Manual Ability Classification System and Neurological Hand Deformity Classification were the best predictors of health-related quality of life measures. Age and Cerebral Palsy Quality of Life Questionnaire for Children participation and pain domain scores can predict Child Health Utility 9D scores.

AIM: To examine the frequency, characteristics, and factors associated with speech delay and disorder in a community sample of children with cerebral palsy (CP). METHOD: Participants were 84 children (37 females, 47 males; aged between 4y 11mo-6y 6mo) with CP identified through a population-based registry. Speech and oromotor function were systematically evaluated to provide a differential diagnosis of articulation, phonological, and motor speech disorders. RESULTS: In total, 82% (69/84) of participants had delayed or disordered speech production, including minimally verbal presentations (n=20). Verbal participants (n=64) presented with dysarthria (78%), articulation delay or disorder (54%), phonological delay or disorder (43%), features of childhood apraxia of speech (CAS) (17%), or mixed presentations across these conditions. Speech intelligibility was poorest in those with dysarthria and features of CAS. Speech delay or disorder in verbal participants was associated with language impairment (p=0.002) and reduced health-related quality of life (p=0.04) (Fisher's exact test). Poorer speech accuracy (i.e. lower percentage consonants correct) correlated with greater impairments in both language (p<0.001) and oromotor function (p<0.001) (Spearman's test). INTERPRETATION: The speech profile of children with CP is characterized by impairment at multiple levels of speech production (phonetic, cognitive-linguistic, neuromuscular execution, and high-level planning/programming), highlighting the importance of a personalized differential diagnosis informing targeted treatment.

Aim To: (1) investigate the relationship between upper‐limb impairment and health‐related quality of life (HRQoL) for children with cerebral palsy and (2) develop a mapping algorithm from the Cerebral Palsy Quality of Life Questionnaire for Children (CPQoL‐Child) onto the Child Health Utility 9D (CHU9D) measure. Method The associations between physical and upper‐limb classifications and HRQoL of 76 children (40 females, 36 males) aged 6 to 15 years (mean age 9 years 7 months [SD 3y]) were assessed. Five statistical techniques were developed and tested, which predicted the CHU9D scores from the CPQoL‐Child total/domain scores, age, and sex. Results Most participants had mild impairments. The Manual Ability Classification System (MACS) level was significantly negatively correlated with CHU9D and CPQoL‐Child (r=−0.388 and r=−0.464 respectively). There was a negative correlation between the Neurological Hand Deformity Classification (NHDC) and CPQoL‐Child (r=−0.476, p<0.05). The generalized linear model with participation, pain domain, and age had the highest predictive accuracy. Interpretation The weak negative correlations between classification levels and HRQoL measures may be explained by the restricted range of impairment levels of the participants. The MACS and NHDC explained the impact of upper‐limb impairment on HRQoL better than the other classifications. The generalized linear model with participation, pain, and age is the suggested mapping algorithm. The suggested mapping algorithm will facilitate the use of CPQoL‐Child for economic evaluation and can be used to conduct cost–utility analyses. What this paper adds The Manual Ability Classification System and Neurological Hand Deformity Classification were the best predictors of health‐related quality of life measures. Age and Cerebral Palsy Quality of Life Questionnaire for Children participation and pain domain scores can predict Child Health Utility 9D scores.

BACKGROUND: Focus is shifting to better understand the lived experiences of children with intellectual disability in relation to their quality of life (QOL). Yet no available QOL measures are grounded in the domains important for this population. We previously conducted qualitative parent caregiver interviews identifying QOL domains in children with intellectual disability to constitute a new measure of QOL. This study describes the content validity of the Quality of Life Inventory-Disability (QI-Disability), a parent-report measure developed for children with intellectual disability. METHODS AND RESULTS: Questionnaire items were extracted from a qualitative dataset of 77 parent caregiver interviews. To establish content validation, a draft of QI-Disability was administered to 16 parent caregivers of children with intellectual disability (Down syndrome, Rett syndrome, cerebral palsy, or autism spectrum disorder). Parents participated in a cognitive interviewing procedure known as the "think-aloud" method. The process of item generation, cognitive debriefing, and refinement of QI-Disability prior to its pilot testing are described. A conceptual framework is presented. CONCLUSIONS: Satisfactory content validity is reported, where ongoing consumer feedback shaped the dataset from which the final items were selected. Use of QI-Disability for children with intellectual disability will allow for greater insight into service utility and targeted intervention.

AIM: To examine current clinical practice for prescribing medications for children with dystonic cerebral palsy (CP) by medical doctors working at a tertiary care centre. METHODS: Rehabilitation and developmental paediatric specialists completed: (i) a custom-designed online cross-sectional survey capturing their usual prescribing patterns; and (ii) one-page questionnaires detailing medication prescription for each child with CP who they started on a new medication for dystonia over a 12-month period. RESULTS: Eleven participating doctors ranged in experience in managing children with CP from less than 5 years to more than 20 years. The cross-sectional survey showed that most doctors used more than one medication, with six making choices taking into account four or more different medications. Oral baclofen was used by all doctors and was the first choice of 10 of 11. Prospective surveys from 57 children showed that medication was prescribed mainly for children aged 3-10 years (n = 35/57), classified within Gross Motor Function Classification System levels IV and V (n = 40/57) and with a mixed movement disorder (n = 38/57). Gabapentin and baclofen were the most frequently prescribed (n = 21/57 and 19/57, respectively), with other drugs used less frequently. Dosage regimens varied between and within doctors, particularly for the use of gabapentin and diazepam. CONCLUSIONS: Oral medication prescribing practices varied among doctors managing children with dystonic CP at a tertiary care hospital, particularly with respect to dosing. There is a need for clinical guidelines for medication prescription to be developed based on best evidence and consensus by clinical experts.

BACKGROUND: Mothers of children with a disability have a higher risk of mental health difficulties than mothers of typically developing children. Very little is known about how health professionals perceive their role in supporting mothers' mental health. We aimed to explore the perspectives of health professionals working with families of children with a disability about how they provide support for maternal mental health in their roles. Specifically, whether professionals consider it their role and responsibility to provide support, the types of actions that they engage in to do this, and the challenges that they experience. METHODS: This qualitative semi-structured interview study included 13 health professionals (allied health professionals, general practitioners, and paediatricians) working with families of a child with a disability. Thematic analysis was conducted on transcribed interview data. RESULTS: Four overlapping themes were identified from the data indicating that professionals knew that mothers needed mental health support but were not always clear about their roles and responsibilities to support maternal mental health. Professionals also found it difficult to address maternal mental health difficulties, were not always aware of the best strategies to support maternal mental health, and faced difficulties that could be overcome with training and system improvements. CONCLUSIONS: Although all health professionals were aware of the frequent occurrence of maternal mental health difficulties and the importance of addressing them, several challenges were identified to managing them successfully. Providing health professionals with training in discussing mental health and clearer referral pathways would contribute to mothers being better supported, in addition to policy change that allows parental support in child health services.

BACKGROUND: Mothers of children with a disability are at increased risk of poor mental health compared with mothers of typically developing children. The aim of the study was to describe the mental health care needs and preferences for support of mothers of children and young people aged 0-25 years with a disability. METHODS: A cross-sectional study was used, using an online survey with 294 mothers of children with a disability. Questions were asked about mental health, perceived need for support, barriers to accessing mental health care, and preferences for support. Descriptive and chi-squared analyses were performed. RESULTS: High rates of mental ill health were self-identified in the previous 12 months, with reported clinically significant depression (44%), anxiety (42%), and suicidality (22%). Nearly half (48%) of the mothers reported high to very high psychological distress. Although 75% of mothers perceived a need for professional support, only 58% attempted to access this. Key barriers to accessing support were caregiving duties making it difficult to schedule appointments (45%) and not perceiving the mental health problem as serious enough to require help (36%). Individual counselling was the preferred type of support (66%) followed by professionally guided relaxation (49%) and education about mental health (47%). Support was considered most critical at the time of diagnosis and during medical intervention for their child. CONCLUSIONS: Although mental health problems were common and mothers perceived the need for professional help, several key barriers were preventing mothers from accessing help. Our study suggests that improving mothers' knowledge of when and where to seek help (mental health literacy) may encourage their access to support. There also needs to be more accessible treatment to mothers given the high care demands that are placed upon them.

AIM: Economic appraisal can help guide policy-making for purchasing decisions, and treatment and management algorithms for health interventions. We conducted a systematic review of economic studies in cerebral palsy (CP) to inform future research. METHOD: Economic studies published since 1970 were identified from seven databases. Two reviewers independently screened abstracts and extracted data following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Any discrepancies were resolved by discussion. RESULTS: Of 980 identified references, 115 were included for full-text assessment. Thirteen articles met standard criteria for a full economic evaluation, two as partial economic evaluations, and 18 as cost studies. Six were full economic evaluations alongside clinical studies or randomized controlled trials, whereas seven involved modelling simulations. The economic case for administration of magnesium sulfate for imminent preterm birth is compelling, achieving both health gain and cost savings. Current literature suggests intrathecal baclofen therapy and botulinum toxin injection are cost-effective, but stronger evidence for long-term effects is needed. Lifestyle and web-based interventions are inexpensive, but broader measurement of outcomes is required. INTERPRETATION: Prevention of CP would avoid significant economic burden. Some treatments and interventions have been shown to be cost-effective, although stronger evidence of clinical effectiveness is needed. What this paper adds Cost-effectiveness evidence shows prevention is the most significant strategy. Some treatments are cost-effective, but stronger evidence for long-term effectiveness is required. Comparison of treatment costs is challenging owing to variations in methodologies and varying clinical indications.

BACKGROUND: Although it is estimated that half of all children with cerebral palsy also have comorbid intellectual disability, the domains of quality of life (QOL) important for these children are not well understood. The aim of this study was to identify important domains of QOL for these children and adolescents. METHODS: Due to the children's communication impairments, qualitative semi-structured interviews were conducted with 18 parents. The children (9 males) had a median age of 12 (range 7 to 17) years at interview and nearly two thirds were classified as Gross Motor Function Classification System IV or V. A grounded theory approach was used to identify domains of QOL. RESULTS: The 11 domains identified as important to QOL were physical health, body comfort, behaviour and emotion, communication, predictability and routine, movement and physical activity, nature and outdoors, variety of activity, independence and autonomy, social connectedness, and access to services. CONCLUSIONS: The domains of QOL that emerged from this study will be useful for professionals who support children with cerebral palsy and their families. They will also be important for developing a QOL instrument essential for informing the development of interventions and their monitoring and evaluation.

This commentary is on the original article by van Hulst et al. on pages 531–537 of this issue.

AIM: Children with cerebral palsy (CP) have reduced levels of physical activity compared with children without physical disability and experience risk factors for becoming overweight or obese. In the Australian CP population, there is little information available about the weight status of children with CP. The aims of this study were to compare the distribution of body mass index (BMI) in a cohort of ambulant children with CP with the BMI distribution of Australian children and explore the relationship between BMI and gross motor function. METHODS: A retrospective cohort study of 587 children with CP Gross Motor Function Classification System (GMFCS) levels I-III who attended a Gait Laboratory between July 1995 and January 2012 was carried out. The BMI and Z-score were calculated at each assessment. Data were grouped into the categories of underweight, healthy, overweight and obese according to age-specific and sex-specific percentiles. RESULTS: There were 348 boys and 240 girls with a mean age 11.2 (standard deviation 3.2) years. Mean BMI Z-score was 0.11 (standard deviation 1.33). Seven percent of children were underweight, 73.6% healthy, 7.3% overweight and 12.1% obese. This was similar to the distribution of children without disability. The largest percentage of children in the healthy group were classified GMFCS I. The largest percentage of children in the obese group were classified GMFCS III. CONCLUSIONS: In this cohort, 19.4% of ambulant children with CP were overweight or obese. This is of concern as BMI may impact on the outcomes of surgical intervention and rehabilitation. Further research is needed to determine the consequences of obesity for children with CP.

BACKGROUND: Individuals with intellectual disabilities are at increased risk of becoming overweight or obese. This is particularly evident in people with trisomy 21 and Prader-Willi syndrome (PWS). Although metabolic factors are known to contribute to obesity in trisomy 21 and hyperphagia plays a primary role in PWS, hyperphagia has not yet been investigated as a possible contributing factor to obesity in trisomy 21. METHODS: Participants comprised three diagnostic groups: trisomy 21 (T21 group), PWS (PWS group) and lifestyle-related obesity (LRO group). They were required to be aged 6-18 years and have a body mass index over the 85th percentile for age and gender. A parent of each participant completed the Hyperphagia Questionnaire and the Children's Leisure Activity Study Survey. Mean scores for each domain and across all domains of the Hyperphagia Questionnaire and the Children's Leisure Activity Study Survey were compared between diagnostic groups using linear regression analysis. RESULTS: The study group consisted of 52 young people (23 men and 29 women) aged 6-18 years (mean 12.5 years; T21 group n = 17, PWS group n = 16 and LRO group n = 19). As hypothesised, the PWS group had the highest mean scores across all domains of the Hyperphagia Questionnaire, and the LRO group had the lowest. Food-seeking behaviour was more pronounced in the PWS group than the T21 group (mean score 13.2 vs. 8.6, p = 0.008). The LRO group spent more hours per week engaged in physical activity (14.7) in comparison with the other groups (9.6 and 9.7), whereas between the groups, differences in time spent in sedentary activities were less pronounced. CONCLUSIONS: Preoccupation with food and low levels of physical activity may contribute to the development of overweight and obesity in some individuals with trisomy 21. These factors warrant consideration in the clinical context.

Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mutation on the MECP2 gene. There has been no systematic evaluation of the domains of quality of life (QOL) in Rett syndrome. The aims of this study were to explore QOL in school-aged children with Rett syndrome and compare domains with those identified in other available QOL scales. The sample comprised 21 families registered with the Australian Rett Syndrome Database whose daughter with Rett syndrome was aged 6-18 years. Semi-structured telephone interviews were conducted with each parent caregiver (19 mothers, 2 fathers) to investigate aspects of their daughter's life that were satisfying or challenging to her. Qualitative thematic analysis using a grounded theory framework was conducted, and emerging domains compared with those in two generic and three disability parent-report child QOL measures. Ten domains were identified: physical health, body pain, and discomfort, behavioral and emotional well-being, communication skills, movement and mobility, social connectedness, variety of activities, provision of targeted services, stability of daily routines, and the natural environment. The two latter domains were newly identified and each domain contained elements not represented in the comparison measures. Our data articulated important aspects of life beyond the genetic diagnosis. Existing QOL scales for children in the general population or with other disabilities did not capture the QOL of children with Rett syndrome. Our findings support the construction of a new parent-report measure to enable measurement of QOL in this group.