Health-Related Quality of Life of Children with Asthma: Self and Parental Perceptions.

PURPOSE: This study aimed to explore whether age, gender, asthma severity, asthma duration, and exposure to parental smoking were associated with levels of asthma-specific health-related quality of life (HRQoL) among Greek children with asthma and to identify any differences between self- and proxy ratings of asthma-specific HRQoL. METHOD: One hundred and seventy-three (173) children with asthma (8-12 years old) and their parents completed the Pediatric Quality of Life Asthma Module self- and proxy measures. RESULTS: Asthma severity, age, and asthma duration explained almost half of the variance in asthma-specific HRQoL scores according to self- and proxy reports. Older male children with more severe asthma who were diagnosed for a longer period of time and had at least one smoking parent reported lower asthma-specific HRQoL according to self- and proxy reports. Although children and their parents seemed to agree in their views of asthma-specific HRQoL, there were significant differences in ratings of specific parameters of asthma-specific HRQoL. CONCLUSION: This study identifies the factors that account for a significant variance in asthma-specific HRQoL scores according to self- and proxy reports and is among the first to record the effect of parental smoking on children's and parents' perceptions of asthma-specific HRQoL.

The relationship between smoking and quality of life in advanced lung cancer patients: a prospective longitudinal study.

PURPOSE: Smoking is a major cause of lung cancer, and continued smoking may compromise treatment efficacy and quality of life (health-related quality of life (HRQoL)) in patients with advanced lung cancer. Our aims were to determine (i) preference for treatments which promote quality over length of life depending on smoking status, (ii) the relationship between HRQoL and smoking status at diagnosis (T1), after controlling for demographic and clinical variables, and (iii) changes in HRQoL 6 months after diagnosis (T2) depending on smoking status. METHODS: Two hundred ninety-six patients with advanced lung cancer were given questionnaires to assess HRQoL (EORTC QLQ-C30), time-trade-off for life quality versus quantity (QQQ) and smoking history (current, former or never smoker) at diagnosis (T1) and 6 months later (T2). Medical data were extracted from case records. RESULTS: Questionnaires were returned by 202 (68.2 %) patients at T1 and 114 (53.3 %) at T2. Patients favoured treatments that would enhance quality of life over increased longevity. Those who continued smoking after diagnosis reported worse HRQoL than former smokers or those who never smoked. Smoking status was a significant independent predictor of coughing in T1 (worse in smokers) and cognitive functioning in T2 (better in never smokers). CONCLUSIONS: Smoking by patients with advanced lung cancer is associated with worse symptoms on diagnosis and poorer HRQoL for those who continue smoking. The results have implications to help staff explain the consequences of smoking to patients.

Efficacy of theory-based interventions for young people with type 1 diabetes: a systematic review and meta-analysis.

PURPOSE: Theory-based behaviour change interventions have been recommended to improve outcomes for young people with type 1 diabetes. However, theory has exclusively been considered in a simplistic all-or-none fashion. We therefore (1) examined the nature and extent of explicit theory use in published interventions involving young people with type 1 diabetes and (2) the relationship between how theory is used and intervention outcomes. METHODS: We conducted systematic searches for randomized controlled trials (RCTs) published between 1999 and 2012. We used a detailed structured framework to code how theory was used and meta-analytic techniques to examine the relationships between theory use and intervention efficacy. RESULTS: We identified 34 articles comprising 27 RCTs. Thirty per cent (k = 8) did not use theory in any of the ways assessed. Where present, the most common use of theory was providing evidence that a targeted theoretical construct predicted behaviour (k = 15; 56%). Trials that used theory to some extent had marginally larger pooled effect sizes for both medical and psychological outcomes than those that did not. However, in meta-regression models, use of theory did not significantly predict intervention outcomes. CONCLUSIONS: Theory is under-utilized in intervention development for young people with type 1 diabetes. When employed, theory appears to be advantageous, but not necessarily predictive of intervention success. We argue that greater emphasis is needed on choosing appropriate theory, which should then become central to the process of intervention development. Statement of contribution What is already known on this subject? Interventions for young people with type 1 diabetes that explicitly cite a theoretical basis may be more effective than those that do not. Recommendations have been made for theory to be central to the intervention development process in this area. What does this study add? Theory use in recent interventions for young people with type 1 diabetes is extremely limited. Larger positive medical and psychological outcomes are observed in interventions making some use of theory. Greater use of theory does not necessarily guarantee intervention success.

How do men in the United Kingdom decide to dispose of banked sperm following cancer treatment?

Current policy in the UK recommends that men bank sperm prior to cancer treatment, but very few return to use it for reproductive purposes or agree to elective disposal even when their fertility recovers and their families are complete. We assessed the demographic, medical and psychological variables that influence the decision to dispose by contacting men (n = 499) who banked sperm more than five years previously, and asked them to complete questionnaires about their views on sperm banking, fertility and disposal. From 193 responses (38.7% response rate), 19 men (9.8%) requested disposal within four months of completing the questionnaire. Compared with men who wanted their sperm to remain in storage, they were significantly more confident that their fertility had recovered (OR = 1.78, 95% CI = 1.05-3.03, p = 0.034), saw fertility monitoring (semen analysis) as less important (OR = 0.61, 95% CI = 0.39-0.94, p = 0.026), held more positive attitudes to disposal (OR = 5.71, 95% CI = 2.89-11.27, p < 0.001), were more likely to have experienced adverse treatment side-effects (OR = 4.37, CI = 1.61-11.85, p = 0.004) and had less desire for children in the future (OR = 0.41, 95% CI = 0.26-0.64, p < 0.001). Information about men's reasons to dispose of banked sperm may be helpful in devising new strategies to encourage men to engage with sperm banking clinics and make timely decisions about the fate of their samples.

Why don't some men with banked sperm respond to letters about their stored samples?

Abstract Long-term storage of banked sperm, especially when it is not needed, for reproductive purposes, is costly and poses practical problems for sperm banks. For sperm banks to function efficiently, men must understand the implications of unnecessary storage, and make timely decisions about disposal of their own samples. Men who bank sperm prior to cancer treatment are routinely offered follow-up consultations to test their fertility, update consent and, where necessary, expedite referral for Assisted Conception. Yet sperm banks report that men do not respond to letters, suggesting samples are stored needlessly. We conducted semi-structured interviews with six men with a history of not responding to letters, to document reasons for non-response. Interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Men's reasons for not responding are a complex interplay between past, present and future perspectives. In terms of their past, information is important on diagnosis, because men must understand that fertility can change after treatment. Present and future concerns focus on fears of being told fertility has not recovered and being pressured to dispose of banked sperm. The challenge is to devise invitation letters that address men's concerns while offering them tangible benefits and peace of mind.

The importance of fertility preservation in cancer patients.

The potential risks of anti-cancer therapy for male and female fertility are well understood, yet evidence suggests that fewer patients than predicted actually preserve their fertility before therapy begins. Studies of post-pubertal males and females suggest that the approach of health professionals in oncology is vital in facilitating successful sperm and egg banking. For men, this seems to be compounded by a general lack of understanding about their personal risk of infertility. Those involved in delivering anticancer therapy therefore have a vital role to play in providing timely information and facilitating efficient referral to fertility services. In the future, this is likely to become more important if new fertility preservation strategies such as ovarian and testicular tissue banking become more routinely used, with implications for both pre- and post-pubertal individuals.

Health-related quality of life and symptom reporting: similarities and differences between children and their parents.

Health-related quality of life (HRQOL) is increasingly seen as important to reflect the impact of an illness and its treatment on a patient from the patient's perspective. However, there may be times when it is difficult to obtain this information directly from pediatric patients, and parents are therefore used as substitutes. Nevertheless, an informant discrepancy between children and their parents increase the need to identify variables which contribute to the observed differences between children's self-reports and parents' proxy-reports. Discrepancies between child and parent reports have often been regarded as "methodological error" and have led to misconceived arguments about who is "right." The aims of this review are to provide an overview and update to help understand the relation between children's self-report of their symptoms and HRQOL and parents' proxy-reports, the circumstances in which informant discrepancies might be expected, and potential reasons for these discrepancies. Discrepancies can be summarized in relation to characteristics of the child, the adult and the HRQOL domain being measured. We conclude that informant discrepancy is not simply an irritating measurement error, but also has its clinical implications. We argue that parents and children base their judgments of pediatric HRQOL on different information and as such, comprehensive evaluation needs to take account of both perspectives. This perspective has implications for the design of clinical trials and necessitates routine collection of data from both sources in clinical research and practice.

Living with advanced but stable multiple myeloma: a study of the symptom burden and cumulative effects of disease and intensive (hematopoietic stem cell transplant-based) treatment on health-related quality of life.

CONTEXT: The cumulative impact of disease and treatment-related factors on health-related quality of life (HRQoL) in long-term survivors of multiple myeloma is poorly characterized. OBJECTIVES: To characterize HRQoL and symptom burden in advanced, intensively treated myeloma. METHODS: We performed detailed assessments in patients who had undergone hematopoietic stem cell transplantation and subsequent treatment for at least one episode of progressive disease. To exclude the impact of active disease and acute toxicity of treatment, patients were in a stable plateau phase. Patients were assessed for HRQoL (Short Form-12, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, and Multiple Myeloma Module), pain (Brief Pain Inventory-Short Form), peripheral neuropathy (self-report Leeds Assessment of Neuropathic Symptoms and Signs), and concerns (adapted from Profile of Concerns). Serum interleukin-6 and tumor necrosis factor-alpha were measured. RESULTS: A total of 32 patients were enrolled, with a median age of 55 years at diagnosis and 60 years at assessment. After a median 5.5 years from diagnosis and three lines of treatment, physical functioning was significantly compromised (P<0.001) and associated with progressive work disability and concerns regarding loss of independence. Fatigue and pain were the predominant symptoms, impacting negatively on physical functioning (P<0.001). Pain was predominantly neuropathic in half the patients. Serum interleukin-6 levels positively correlated with pain (P=0.03), pain interference (P=0.003), insomnia (P=0.02), and appetite loss (P=0.02), and inversely correlated with physical functioning (P=0.03). CONCLUSION: Despite disease control and supportive care, intensively treated long-term myeloma survivors have significantly compromised HRQoL related to symptom burden. Systematic assessment is routinely indicated in advanced phase myeloma, even when disease activity is stable. Further studies should investigate the utility of interventional strategies and the relationship of cytokines with symptoms.

The personal experience of parenting a child with juvenile Huntington's disease: perceptions across Europe.

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington's disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington's disease; living with the disease; other people's knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe.

Does an intensive self-management structured education course improve outcomes for children and young people with type 1 diabetes? The Kids In Control OF Food (KICk-OFF) cluster-randomised controlled trial protocol.

INTRODUCTION: The Kids In Control OF Food (KICk-OFF) is a cluster-randomised controlled trial, which aims to determine the efficacy of a 5 day structured education course for 11-year-olds to 16-year-olds with type 1 diabetes (T1DM) when compared with standard care, and its cost effectiveness. Less than 15% of children and young people with T1DM in the UK meet the recommended glycaemic target. Self-management education programmes for adults with T1DM improve clinical and psychological outcomes, but none have been evaluated in the paediatric population. KICk-OFF is a 5-day structured education course for 11-year-olds to 16- year-olds with T1DM. It was developed with input from young people, parents, teachers and educationalists. METHODS AND ANALYSIS: 36 paediatric diabetes centres across the UK randomised into intervention and control arms. Up to 560 participants were recruited prior to centre randomisation. KICk-OFF courses are delivered in the intervention centres, with standard care continued in the control arm. Primary outcomes are change in glycaemic control (HbA1c) and quality of life between baseline and 6 months postintervention, and the incidence of severe hypoglycaemia. Sustained change in self-management behaviour is assessed by follow-up at 12 and 24 months. Health economic analysis will be undertaken. Data will be reported according to the CONSORT statement for cluster-randomised clinical trials. All analyses will be by intention-to-treat with a two-sided p value of <0.05 being regarded as statistically significant. The study commenced in 2008. Data collection from participants is ongoing and the study will be completed in 2013. ETHICS: The study has been approved by the Sheffield Research Ethics Committee. DISSEMINATION: Results will be reported in peer reviewed journals and conferences. TRIAL REGISTRATION: Current Controlled Trials ISRCTN37042683.

Health-related quality of life in patients with hepatocellular carcinoma: the mediation effects of illness perceptions and coping.

BACKGROUND: The aims of this study were to explore health-related quality of life (HRQOL) in patients with hepatocellular carcinoma (HCC). We report the following: (1) differences in HRQOL between patients with HCC and the general population; (2) significant physical and psychological predictors of HRQOL; and (3) mediation effects of illness perceptions and coping on HRQOL. METHODS: Patients with HCC (n = 286) from Taiwan completed standardized measures of HRQOL, illness perception (cognitive representations, emotional representations and illness comprehensibility) and coping (emotion-oriented and problem-orientation coping). Demographic and physical variables were also collected. RESULTS: Patients with HCC had worse global HRQOL, physical, role, cognitive and social functioning, but better emotional functioning than the general population. Physical variables and cognitive representation were significant predictors of global HRQOL, physical functioning and emotional functioning. Cognitive representation mediated the relationships between physical variables and global HRQOL, physical functioning and emotional functioning, but coping only mediated the relationship between cognitive representation and global HRQOL. CONCLUSIONS: The results suggest that physical variables have direct effects on global HRQOL and physical functioning, but there were also partial mediations through cognitive representation. The effect of physical variables on emotional functioning was mediated through cognitive and emotional representations. Patients with better performance status and positive illness perceptions tended to report better HRQOL, but those with negative illness perceptions and who used more emotion-oriented coping had worse HRQOL. Limitations of the work associated with use of theory and measures developed in Europe and the US are discussed, as are the clinical implications for patients with HCC.

Illness experience in patients with hepatocellular carcinoma: an interpretative phenomenological analysis study.

AIMS: Hepatocellular carcinoma (HCC) is common in Asia and has implications for compromised health-related quality of life. We report a qualitative study to explore the impact of HCC on patients' lives and the adjustment process. METHODS: Thirty-three adult patients with HCC in Taiwan (age from 31 to 76 years) took part in a semistructured interview. The interview guide included illness experience, strategies used to deal with the disease, and any significant concerns in their current life. Data were analyzed using interpretative phenomenological analysis. RESULTS: Three main themes were identified. These included: (a) the impact of disease: HCC was associated with physical symptoms and psychosocial stress, as well as positive changes; (b) illness perceptions: patients perceived HCC as a long-term and chronic disease that could not be cured but might be controlled; and (c) coping strategies: these included focusing on managing HCC and its symptoms, emotional responses, and leading a normal life. CONCLUSION: Patients' physical condition, their illness perceptions, and coping strategies all contributed to their disease adjustment. Our results suggest that patients in Taiwan are as keen for information about their disease as described in Western cultures. Cross-cultural work is needed to enhance our understanding about how the social or cultural contexts shape individuals coping with cancer.

The effect of smoking on health-related quality of life in lung cancer patients: a systematic review.

INTRODUCTION: Given poor survival rates for lung cancer, health-related quality of life (HRQoL) is very important. Smoking is prevalent among those diagnosed with lung cancer, and continued smoking is associated with compromised HRQoL in other patient groups. AIMS: A systematic review was conducted to determine: (i) differences in HRQoL between lung cancer patients who smoke compared with those who quit or never smoked and (ii) changes in HRQoL in patients who continue to smoke after diagnosis compared with those who quit or never smoked. METHOD: Scopus, Medline, PubMed, PsychINFO and Web of Knowledge from January 1995 to June 2010 were searched. The included studies were assessed and given a score for quality. RESULTS: Eight studies met the inclusion criteria. Four studies showed that lung cancer patients who smoked report impaired HRQoL compared with those who never smoked or had quit. Smokers reported significantly lower HRQoL than former smokers, who in turn reported lower HRQoL than never smokers. This finding remained consistent over time. CONCLUSIONS: When taking account of methodological quality, smoking is associated with poorer HRQoL in lung cancer patients. These results suggest that programmes are needed to address the specific support needs of this group and promote HRQoL during their final months. Longitudinal research is necessary to further understand the association between smoking and HRQoL.

Banking sperm is only the first of many decisions for men: what healthcare professionals and men need to know.

Sperm banking is recommended for all males prior to cancer treatment where there are risks of infertility. Subsequent decisions about monitoring fertility, use of banked sperm or disposal are less well understood, with adverse consequences for men and cost implications. We review the literature around key decision points: Diagnosis of cancer, monitoring fertility, use of banked sperm and sperm disposal. The results suggest that decisions about banking are compromised by concerns to initiate treatment quickly; subsequent decisions about monitoring fertility, use of banked sperm or disposal are coloured by the views of family members, men's failure to understand the longer-term implications and their reluctance to avail themselves of health care generally. Methodological limitations of current research include low response rates, increased focus on germ cell cancers and a lack of research outside North America. There is evidence that men and oncologists could use sperm banks more "wisely". Lack of longitudinal work means it is not possible to determine the long-term consequences of banking for men's general health and well-being, or identify barriers to fertility monitoring or disposal. We argue that sperm banking should be considered as a series of decisions, all involving implications for fertility, contraception and social and psychological adjustment to cancer.

Sexual functioning in male survivors of lymphoma: a systematic review (CME).

INTRODUCTION: The lymphomas (Hodgkin's lymphoma [HL] and non-Hodgkin's lymphoma [NHL]) are among the most common cancers affecting men under 45 years. Survival rates are now excellent, but treatment is associated with a number of side effects including sexual dysfunction with potential implications for compromised quality of life (QoL). AIMS: To address the (i) prevalence of sexual dysfunction among lymphoma survivors relative to the general population, survivors of other cancers, and in survivors of HL and NHL; and (ii) relationships between sexual functioning and disease and treatment, demographic, and psychological variables. METHODS: Inclusion criteria were quantitative studies that focused on adult male survivors of lymphoma and included a comparison group and presented results separately for HL and NHL. Standardized systematic searches were used. Information about design, sample size, age, time since diagnosis, type of treatment, comparison group, measures, and findings were extracted from eligible studies. RESULTS: Ten articles met the inclusion criteria, of which, nine included patients with HL only, and one included patients with HL or NHL. Sexual function was compromised relative to the general population, better than testicular cancer survivors, and worse than leukemia survivors. Depression was consistently associated with sexual dysfunction. There was evidence that chemotherapy, relapse, reduced testosterone levels, older age at survey, and worse physical QoL were associated with worse sexual function. CONCLUSIONS: Conclusions are limited by methodological issues including lack of utilization of standardized measures of sexual function and longitudinal research. Even so, there is evidence of sexual dysfunction among lymphoma survivors. Clinicians need to be sensitive to these issues. Future longitudinal work is necessary to determine the likelihood of recovery.

Satisfaction with follow-up consultations among younger adults treated for cancer: the role of quality of life and psychological variables.

OBJECTIVE: Given increased survival rates and treatment-related late effects, follow-up for cancer survivors is increasingly recommended. However, information about adverse events (e.g. possibility of late effects) may be distressing for the cancer survivor and lead to poor clinic attendance. Survivor satisfaction with appointments and the information provided are important. The Monitoring Process Model provides a theoretical framework to understand how survivors cope with threatening information, and consequences for follow-up care. Our aims were to describe satisfaction with routine follow-up and association between monitoring/blunting and satisfaction with care. METHODS: Three hundred and forty-nine patients [aged 18-45 years with a history of haematological, germ cell, breast or childhood cancer, >5 years from diagnosis without relapse (>2 years for germ cell survivors) and with a follow-up appointment during the study period] were identified from hospital databases. Participants completed questionnaires before (T1) and after a routine appointment (T2). RESULTS: Two hundred and seventy-nine (79.9%) questionnaires were completed at T1 and 198 (56.7%) at T2. Clinic satisfaction was higher with shorter waiting time, longer consultation and more topics discussed, but not associated with monitoring. High monitors reported more psychological problems, more importance of clinic attendance and greater value of support groups and professional counselling. CONCLUSIONS: Satisfaction with follow-up is high among young adult cancer survivors. Follow-up was rated more highly by higher monitors, supporting previous findings that monitors seek out health care information. Provision of additional support services might increase satisfaction among survivors with psychological and social problems.

Health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (T1DM): self and parental perceptions.

The aim of the study was to evaluate health-related quality of life (HRQoL) in children and adolescents with type 1 diabetes mellitus (T1DM) in Greece compared with healthy controls and to identify the effect of age, gender, age of onset of disease, and metabolic control on perceptions of HRQoL. A total of 117 children and adolescents with T1DM aged 5-18, their parents, and 128 matched healthy children and adolescents participated. Children and adolescents completed PedsQL™ 4.0 Generic Core Scales. Children and adolescents with T1DM also completed the PedsQL™ 3.0 Diabetes Module, while their parents completed the proxy-reports of both the PedsQL™ 4.0 Generic Core Scales and the PedsQL™ 3.0 Diabetes Module. The results demonstrated that children and adolescents with T1DM had lower general HRQoL compared with healthy matched children and adolescents. Parents of children and adolescents with diabetes reported that the illness has a greater affect on their children's lives than the children themselves. Finally, the results indicated that later age of onset of diabetes, less hyperglycemic episodes, lower glycosylated hemoglobin (HbA1c), older age, and male gender were associated with better general HRQoL and diabetes-specific HRQoL. The findings have implications for designing effective therapeutic interventions aimed at improving the HRQoL of children and adolescents with T1DM.

Can health beliefs help in explaining attendance to follow-up care? The Swiss childhood cancer survivor study.

OBJECTIVE: Improved treatment has increased the survival of childhood cancer patients in recent decades, but follow-up care is recommended to detect and treat late effects. We investigated relationships between health beliefs and follow-up attendance in adult childhood cancer survivors. METHODS: Childhood cancer survivors aged younger than 16 years when diagnosed between 1976 and 2003, who had survived for more than 5 years and were currently aged 20+ years, received a postal questionnaire. We asked survivors whether they attended follow-up in the past year. Concepts from the Health Belief Model (perceived susceptibility and severity of future late effects, potential benefits and barriers to follow-up, general health value and cues to action) were assessed. Medical information was extracted from the Swiss Childhood Cancer Registry. RESULTS: Of 1075 survivors (response rate 72.3%), 250 (23.3%) still attended regular follow-up care. In unadjusted analyses, all health belief concepts were significantly associated with follow-up (p<0.05). Adjusting for other health beliefs, demographic, and medical variables, only barriers (OR=0.59; 95%CI: 0.43-0.82) remained significant. Younger survivors, those with lower educational background, diagnosed at an older age, treated with chemotherapy, radiotherapy, or bone marrow transplantation and with a relapse were more likely to attend follow-up care. CONCLUSIONS: Our study showed that more survivors at high risk of cancer- and treatment-related late effects attend follow-up care in Switzerland. Patient-perceived barriers hinder attendance even after accounting for medical variables. Information about the potential effectiveness and value of follow-up needs to be available to increase the attendance among childhood cancer survivors.

Health-related quality of life in haematopoietic stem cell transplant survivors: a qualitative study on the role of psychosocial variables and response shifts.

PURPOSE: Psychosocial assessment prior to haematopoietic stem cell transplants (HSCT) can help to identify patients at risk of impaired health-related quality of life (HRQOL) post-transplant. According to the response-shift model, certain antecedents and mechanisms, along with changes in internal standards, values or conceptualizations of HRQOL, facilitate adjustment to changes in health circumstances. This study sought to explore the role of psychosocial variables in adjustment to compromised HRQOL following HSCT, from the theoretical basis of the response-shift model. METHODS: Semi-structured interviews were conducted with 28 patients (15 women, 13 men; 22-71 years), post-HSCT. Time since transplant ranged from 1 month to 28 years. Verbatim transcripts were analysed using template analysis. RESULTS: Patients provided narrative examples of changing their values and internal standards. Optimism, social support, social comparisons, changing expectations and setting goals were identified as important in managing threats to HRQOL. CONCLUSIONS: The response-shift model is a useful theoretical basis for exploring HRQOL in HSCT patients. Response shifts and psychosocial variables may help patients to cope and enabling them to experience good HRQOL despite the negative effects of HSCT. Understanding the adjustment processes has implications for patient care.

Health-related quality of life in a clinical sample of obese children and adolescents.

BACKGROUND: Obesity affects ethnic minority groups disproportionately, especially in the pediatric population. However, little is known about the impact of obesity on health-related quality of life (HRQoL) in children and adolescents from mixed-ethnic samples. The purpose of this study was to: 1) measure HRQoL in a mixed-ethnic clinical sample of obese children and adolescents, 2) compare HRQoL assessments in obese participants and healthy controls, and 3) compare HRQoL in obese children and adolescents according to their pubertal status. METHODS: A clinical sample of children and adolescents with obesity (n = 96) and healthy children and adolescents attending local schools (n = 444) completed the Pediatric Quality of Life Inventory (PedsQL; UK version 4). Age-appropriate versions were self-administered by children and adolescents aged 8-18 years, and interview administered to children aged 5-7 years. Multiple regression analyses controlling for age, gender, pubertal status, and ethnicity were used to compare the PedsQL scores of the two samples. RESULTS: The clinical sample of obese children and adolescents had poorer HRQoL scores on all dimensions of the PedsQL compared to the healthy controls (p < 0.005). Subsequent analyses also demonstrated that in this sample of mixed-ethnic children and adolescents, prepubescent obese children achieved the poorest scores in the emotional functioning dimension. CONCLUSIONS: Obesity significantly impacts on physical, emotional, social and school functioning of mixed-ethnic children and adolescents. Clinicians need to be aware of the significant impact of obesity on all aspects of functioning. More effort is required to target interventions to improve the quality of life of children with obesity.