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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.

The treatment of childhood cancer has been increasingly successful over the past 30 years. Most paediatric cancers are now curable with multiagent chemotherapy in combination with surgery and radiotherapy. The overall survival five years after diagnosis is now 70% for all paediatric malignancies. The incidence is low (1200-1300 children affected each year in Britain), but with the sustained improvement in survival the number of long term survivors is increasing—about 850 additional survivors of childhood cancer each year. With this improved survival, it is important to increase our knowledge of any long term costs in the form of physical and psychosocial adverse health outcomes. This review looks at the evidence relating to long term clinical follow up after childhood cancer and considers ways to develop such follow up for the future. An awareness of the possible long term complications is important not only for optimising health care for the current survivors but also for modifying future treatment protocols to avoid therapies that are associated with unacceptable morbidity or mortality. We have summarised the evidence on selected long term complications; this evidence is inevitably based on retrospective studies. In the final section we discuss the development of a strategy for the clinical follow up of long term survivors. #### Summary points Long term follow up strategies are needed because of increasing numbers of survivors of childhood cancers Models for follow up need to be developed and formally evaluated Increasing numbers of survivors may have medical problems that will require ongoing specialist follow up The role, training programmes, and career structure of the late effects nurse practitioner needs to be developed The primary care physician may have an important role in long term follow up There is a need for prospective evaluation of new treatments and randomised studies of clinical interventions to resolve substantial uncertainties for …

AIMS—To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures. METHODS—Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria. RESULTS—Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status. CONCLUSIONS—We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.

Aims—To determine the need for information among survivors of childhood cancer, to assess the acceptability of an information booklet,and to investigate the eVectiveness of the booklet in increasing knowledge and influencing health related behaviours. Subjects—Fifty survivors of childhood cancer (age range 14‐32 years) who were consecutive attendees at a long term follow up clinic. Methods—The booklet was developed for young people aged 14 years and above by the United Kingdom Children’s Cancer Study Group Late EVects Group.Included is information about treatment of cancer, general advice about a healthy lifestyle, the rationale for long term follow up, and information about employment and life insurance problems. Survivors were interviewed at the follow up clinic, oVered the booklet, and contacted approximately one week later for a telephone interview. The clinic interview assessed survivors’ understanding of their illness and treatment and its impact on their lives, and their preferences for further information. The telephone interview determined survivors’ general reaction to the booklet, whether it increased knowledge and influenced health related behaviours. Results—All those interviewed accepted the written information and agreed to a follow up interview.Survivors were enthusiastic about being given more information. Over three quarters learned new information from the booklet. There were no indications that the information was associated with anxiety for any demographic or clinical subgroups. After reading the booklet there was an increased awareness of the risk from sunbathing (p < 0.05), and greater appreciation of the importance of follow up (p < 0.05). Conclusions—These results suggest that written information is likely to be an acceptable and eVective supplement to discussions with medical professionals and may readily be incorporated into long term follow up clinics. (Arch Dis Child 1998;78:340‐344)

The development of a scale to measure perceived illness experience in young people with cancer is described. Areas of concern were first identified through semistructured interviews conducted with children and adolescents. As a result, 78 items were generated to cover the main areas identified (physical appearance, interference with activity, peer rejection, integration in school, manipulation, parental behaviour, disclosure, preoccupation with illness, and impact of treatment). These items were rated (on five point scales) by 41 patients (mean age 14.6 years) and 35 of their parents. Measures of physical functioning (symptoms, functional disability, and restrictions) and psychological functioning (symptoms) were included for validation purposes. Test-retest reliability was calculated on the basis of ratings made by a subsample of parents on two separate occasions. A 34 item scale was constructed with four items in each of the areas identified above, except for physical appearance (n = 2). The scale has adequate internal reliability and validity. There were significant correlations between parents and their children on all subscales except for illness disclosure and impact of treatment, suggesting that parents may be less reliable informants for their children in these contexts. The scale has potential use in clinical contexts, in evaluating the psychosocial impact of different treatment regimens, and as an outcome measure in intervention work.

Psychological effects of chronic childhood diseases In common with children who have other chronic diseases, those with leukaemia experience a great many restrictions and disadvantages; school life is inevitably interrupted, and many children miss several months schooling immediately after diagnosis.' 2 All children are regularly absent during the course of their treatment either for routine hospital appointments, because of minor infections, or because of outbreaks of contagious diseases-such as measles or chickenpox-among the other children. Such interruptions can have adverse consequences both for their academic achievements and for social relationships. Continued absences mean that the children miss essential lessons, and are continuously behind in written work. Circles of friends may regroup and exclude ill children, who may also return to school changed people, both in appearance and in character. A feeling of isolation can reduce the children's sense of belonging to the school and their participation in activities. Other factors, too, work against chronically sick children in the classroom. Teachers are poorly informed about the implications of disease and may feel reticent about having to teach such children. Many fail to understand the nature of medical complications, and worry that they will be unable to deal with medical emergencies should they arise. A great deal has also been written about the extent to which teachers have reduced expectations about how far chronically sick children should participate in all school activities, or perform academically. These dilemmas have been noted particularly among teachers of children with asthma3 and diabetes,4 as well as among teachers generally.5 Teachers also tend to rate children with cancers as less sociable and more isolated and withdrawn than their healthy peers.6 Parents, too, may communicate to sick children that school attendance and academic achievement are less important after the diagnosis of a chronic condition. Many parents report that such diagnoses force them to put their various ideas into perspective, and acknowledge the importance of less materialistic and competitive ideals.7 Children with chronic diseases typically experience some restrictions of activities, especially in terms of mobility or participation in sports activities. This applies no less to those with leukaemia. Given these restrictions and disadvantages, it should not be surprising that children with chronic diseases commonly show deficits in intellectual achievements,8 9 10 and in behavioural and social functioning. 1" Certain 'risk' factors-especially social disadvantage or the occurrence of other medical complications, as well as the characteristics of the disease itself (such as the extent to which it is associated with visible deficits or reduces the child's mobility)seem to aggravate the possibility of adverse psychological repercussions.'2 13 For those with leukaemia there is the additional 'risk factor' of their treatment regimens. Both radiotherapy and chemotherapy have been implicated as potential sources of damage to the developing central nervous system. Sometime after the introduction of this treatment protocol parents began to report difficulties for their children at school.'4 Typically, poor performance was noted especially in mathematics, problem solving, attention, and concentration skills. Moss and Nannis argued that central nervous system prophylaxis may be particularly damaging for young children, as compensatory mechanisms are less likely to operate when radiation treatment includes the whole brain. 5 They hypothesised that greater intellectual impairment would also occur in younger children who received radiation treatment before the brain was fully developed (below 5 years). Deficits could be expected to become more noticeable with time. This hypothesis is based on the assumption that new learning is more affected than previously acquired skills, and that generalised damage early in life has a profound effect on the individual child. Given parental reports of underachievement, and the possibility of radiation induced damage to the central nervous system, a considerable amount of research has been generated concerned with the short term and long term effects of treatment for leukaemia on the intelligence quotients (IQ) and academic achievements of children with the disease. I will now consider how adequately this research has been designed and carried out, what conclusions can be drawn, and what implications may be drawn for the education of these children.

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 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.

Background While intensive and novel treatments have significantly extended life expectancy in multiple myeloma, the cumulative impact of disease and treatment related factors on quality of life in relapsed patients is poorly characterised. Aims To define the spectrum of quality of life, fatigue, pain, peripheral neuropathy and work disability affecting patients living with advanced relapsed myeloma. Methods The authors prospectively recruited patients with myeloma who had undergone intensive management of myeloma and had received at least one subsequent treatment for progressive disease. Patients were assessed for generic (SF-12) and cancer specific (EORTC) health related quality of life parameters, pain (BPI-SF), peripheral neuropathy (s-LANSS), and concerns (adapted from the Profile of Concern9s Questionnaire). Results 32 patients (median age 61 years) participated: median duration from diagnosis was 5.5 years (range 2–12) and the median number of lines of previous treatment was 3 (range 2-6). The majority (69%) of patients were on regular analgesia. Despite stable disease, ongoing fatigue and pain were predominant symptoms. Pain had a predominantly neuropathic element in half of the cohort. Other features of neuropathy, paraesthesiae and sensory loss, were also common. Physical functioning scores were highly correlated with pain (r=−0.671; p=0.001) and QoL (r=0.576; p=0.001) and fatigue (r=−0.558; p=0.001). Social functioning was also compromised and patients reported dwelling on their current and future illness, worried of recurrence and shortened lifespan. Work disability was reflected by a fall in active or recent employment from 72 to 44% from diagnosis to the date of assessment. Conclusion The late effects of myeloma and its treatments result in compromised quality of life with fatigue, pain, peripheral neuropathy and functional disability despite disease control with modern therapy. Models for comprehensive care of myeloma should actively address physical and social quality of life in this expanding population of patients.

Twenty-eight children in remission at least 2 years after completing chemotherapy for acute lymphoblastic leukaemia were assessed on standardised psychological tests. It was found that 7 who never had central nervous system (CNS) irradiation and 9 having prophylactic CNS irradiation at least 6 months after diagnosis tended to perform at average or above levels, while those 10 each having prophylactic CNS irradiation (within 2 months of diagnosis) were generally of lower ability. Within the latter group, 3 children showed serious intellectual impairments, while the group as a whole functioned especially poorly on quantitative tasks and those involving speeded performance with abstract material. General language ability was not affected. Practical and theoretical implantation are discussed.