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.

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).

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.

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.

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.

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.

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.

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.

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,.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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.

Health-related quality of life in patients with hepatocellular carcinoma: a systematic review.

Background & Aims: This systematic review was conducted to identify the following: (1) generic and disease-specific measures used to assess health-related quality of life (HRQOL) in patients with hepatocellular carcinoma (HCC); (2) HRQOL in patients with HCC compared with those with chronic liver disease and the general population; (3) effects of treatment (liver surgery, hepatic artery transcatheter treatment, and radiotherapy) on HRQOL; (4) relationships between physical variables, symptoms, and HRQOL; (5) relationships between demographic characteristics, psychological variables, and HRQOL; and (6) effects of psychological interventions on HRQOL.

Methods: Computerized databases including British Nursing Index, Cumulative Index to Nursing and Allied Health Literature, Cochrane library, PsychoINFO, and Pubmed were searched.

Results: Thirty-six articles were identified.

Health-related quality of life in survivors of lymphoma: a systematic review and methodological critique.

Survival rates for Hodgkin lymphoma and non-Hodgkin lymphoma have improved in recent years. However, these improvements are associated with various late effects, which can compromise health-related quality of life (HRQoL). Improving HRQoL is a significant goal in oncology, and increasingly one of the primary outcomes in clinical trials, but is dependent on availability of reliable and sensitive measures.

Comparison of self-reported late effects with medical records among survivors of childhood cancer.

Background: Survival rates following childhood cancer have increased, but survivors experience significant late effects. Long-term follow-up is recommended but imposes an increasing burden on health services. We report prevalence of morbidity in a cohort of survivors from South Yorkshire based on: (i) case-note analysis and (ii) self-reported late effects (parent-reported for under-16s).

Body image of children and adolescents with cancer: A systematic review.

We report a systematic literature review to identify (1) differences in body image (BI) between children and adolescents with cancer and healthy controls; (2) relationships between BI and demographic or medical variables; (3) implications of BI for psychological adjustment; and (4) relationship between BI and social support. Thirty-two studies were identified from computerized databases including BNI (1985-March, 2008), CINAHL (1982-March, 2008), MEDLINE (1950-March, 2008), PsychInfo (1806-March, 2008), and PubMed (1950-March, 2008). There was no consistent evidence regarding BI differences between children and adolescents with cancer and healthy controls.

Psychosocial issues and quality of life.

The age group 20 to 39 years includes survivors of childhood cancer and those diagnosed with and treated for cancer during young adult life. Much of what is known about the psychosocial consequences of cancer in this age range is based on work involving survivors of cancer in childhood. We argue that the impact of cancer in young adults is different from experiences during childhood.