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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. 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. 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. 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.

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.

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.

Objective: Poor descriptions of standard care may compromise interpretation of results in randomised controlled trials (RCTs) of health interventions. We investigated quality of standard care in RCTs of behaviour change interventions for young people with type 1 diabetes and consider implications for evaluating trial outcomes.\ud \ud Design: We conducted systematic searches for articles published between 1999 and 2012. We extracted standard care descriptions and contacted trial authors to complete a checklist of standard care activities. The relationship between standard care quality and outcomes was examined via subgroup meta-analyses and meta-regression.\ud \ud Main outcome measures: Standard care descriptions, standard care quality, and relationships between standard care quality with medical and psychological outcomes.\ud \ud Results: We identified 20 RCTs described across 26 articles. Published descriptions of standard care were limited to service-level features. Author responses indicated standard care provision extended beyond published accounts. Subgroup analyses suggested control groups receiving higher standard care quality showed larger improvements in both medical and psychological outcomes, although standard care quality did not predict outcomes significantly.\ud \ud Conclusion: The quality of care delivered to control group participants can influence outcomes of RCTs. Inadequate reporting exacerbates this issue by masking variations between trials. We argue for increased clarity in reporting standard care in future trials.

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.

background: Sperm banking is recommended for all men diagnosed with cancer where treatment is associated with risk of long-term gonadatoxicity, to offer the opportunity of fatherhood and improved quality of life. However, uptake of sperm banking is lower than expected and little is known about why men refuse. Our aims were to determine: (i) demographic and medical variables associated with decisions about banking and (ii) differences in quality of life between bankers and non-bankers at diagnosis (Time 1 (T1)) and 1 year later (Time 2 (T2)).\ud methods: Questionnaires were completed by 91 men (response rate=86.67%) at T1 and 78 (85.71% response rate) at T2.\ud results: In all, 44 (56.41%) banked sperm. They were younger and less likely to have children than non-bankers. In a subset of men who were not sure if they wanted children in the future (n=36), 24 banked sperm. Among this group, those who banked were younger, more satisfied with clinic appointments and less worried about the health of future children. At T2, there were no differences in quality of life between bankers and non-bankers.\ud conclusion: For those who are uncertain about future reproductive plans, decisions depend on their health on diagnosis and satisfaction with clinic care. We conclude that extra care should be taken in counselling younger men who may have given little consideration to future parenting. Results support previous findings that the role of the doctor is vital in facilitating decisions, especially for those who are undecided about whether they wanted children in the future or not.

Diabet. Med. 30, 199–208 (2013) Abstract Aims To determine: (1) prevalence of depression among young people with Type 1 diabetes compared with control groups or population norms; (2) implications of depression for HbA1c level; and (3) the relationship between history of depressive symptoms and future depressive symptoms. Background Among adults with Type 1 diabetes depression is higher than the general population, and has been associated with adverse implications for self-care and HbA1c level. The last published review of depression among young people with Type 1 diabetes only included studies up to 1999. Method Systematic searches were conducted for articles published from January 1999 to December 2011 including young people (up to 25 years old) with Type 1 diabetes. Results Twenty-three articles met the inclusion criteria. Of five studies that reported prevalence of depression compared with control groups, three found no differences. Of the three studies that investigated prevalence of depression making reference to population norms, all three showed higher rates of depressive symptoms. Fourteen of 15 studies found associations between more depressive symptoms and higher HbA1c level either cross-sectionally or longitudinally. Past depressive symptoms were associated with later depressive symptoms. Conclusions Current evidence is inconclusive about whether there is increased prevalence of depression among young adults with Type 1 diabetes, as established among adults, but those who are more depressed have higher HbA1c level. This review is limited by methodological problems and no identified work in the UK met the inclusion criteria. Given the adverse clinical outcomes, we conclude there is a case for routine mental health screening for young adults with Type 1 diabetes.

Diabet. Med. 30, 189–198 (2013) Abstract Aims We report a systematic review to determine (1) prevalence of eating problems compared with peers and (2) the association between eating problems and glycaemic control in young adults with Type 1 diabetes. Method We conducted a systematic literature search via electronic databases and meta-analysis. Cohen’s d (the mean difference score between Type 1 diabetes and comparison groups) was calculated for 13 studies that met inclusion criteria. Results Eating problems [both disordered eating behaviour (39.3 and 32.5%; d = 0.52, 95% CI 0.10–0.94) and eating disorders (7.0 and 2.8%; d = 0.46, 95% CI 0.10–0.81)] were more common in adolescents with Type 1 diabetes compared with peers and both were associated with poorer glycaemic control (d = 0.40, 95% CI 0.17–0.64). In restricted analyses involving measures adapted for diabetes, associations between eating problems and poorer glycaemic control remained (d = 0.54, 95% CI 0.32–0.76). Disordered eating behaviour (51.8 and 48.1%; d = 0.06, 95% CI −0.05 to 0.21) and eating disorders (6.4 and 3.0%; d = 0.43, 95% CI −0.06 to 0.91) were more common in adolescents with Type 1 diabetes compared with peers, but differences were non-significant. Conclusions Eating problems are common among this age group. Future work in populations with Type 1 diabetes should develop sensitive measures of eating problems and interventions, and establish predictors of eating problems. Screening in clinics is recommended.

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.

Study question: What medical and psychological variables predict why men with banked sperm do not return for semen analysis after their cancer treatment has ended? Summary answer: Men who decline the offer of semen analysis are less likely to have reported adverse side effects during cancer treatment, and have a more negative experience of banking sperm and a more negative attitude towards disposal of their stored semen than those who attend. What is known already?: Previous authors have noted that male cancer survivors seem reluctant to have their fertility tested after their treatment has ended. Moreover, the utilization rates of banked sperm are very low (,10%) and the majority of samples are kept for many years without being used. Study design, size and duration: A cross-sectional study of 499 cancer survivors who were sent a questionnaire about their views on sperm banking, fertility and post-treatment semen analysis between April 2008 and December 2010. participants and setting: Men (aged 18–55 years) who had banked sperm in Sheffield and Nottingham (UK) prior to gonadotoxic treatment for cancer more than 5 years previously. Main results and the role of chance: Completed questionnaires were received from 193 men (38.7% response rate) whose samples had been banked for 9.18+3.70 years (range = 4.94–26.21) and whose current age was 35.08+7.08 years (range = 21.58–54.34; mean+SD). One-third (35.8%) had never attended for semen analysis. In multivariate analysis, the odds of not attending for semen analysis were significantly greater among men who did not experience adverse treatment side effects [odds ratio (OR) = 5.72, 95% confidence interval (CI) = 2.10–15.56], who reported a more negative experience of banking sperm (OR = 1.82, 95% CI = 1.17– 2.82) and a more negative attitude to disposal of their stored semen (OR = 1.56, 95% CI ¼ 1.01–2.42). Limitations and reasons for caution: Only 38.7% of those eligible agreed to take part. We do not know the characteristics of men who declined to take part, if they agreed to attend semen analysis without completing the questionnaire or whether they had chosen to have semen analysis performed elsewhere (e.g. private sector). Some of the measures used (e.g. experience of banking sperm) relied on men’s recall of events many years previously. Wider implications of the findings: New strategies are required to encourage these men to engage with fertility monitoring programmes if sperm banks are to be used cost-effectively and men are to be given appropriate fertility advice. Study funding and competing interests: This paper was supported by funding from Cancer Research-UK to C.E., A.A.P. and R.R. (C481/A8141). The views expressed are those of the authors. No competing interests declared.

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. Copyright © 2012 John Wiley & Sons, Ltd.

Diabet. Med. 29, 677–681 (2012) Abstract Aims Young adults with Type 1 diabetes experience difficulties achieving glucose targets. Clinic attendance can be poor, although health and self-care tend to be better among those who attend regularly. Our aims were to describe staff views about challenges working with this age-group (16–21 years). Methods Semistructured interviews were conducted with 14 staff from Sheffield Teaching Hospitals diabetes care team. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results Three main themes emerged. Unique challenges working with young adults included staff emotional burden, the low priority given to self-care by young adults and the complexity of the diabetes regimen. Working in a multidisciplinary team was complicated by differences in consultation styles, poor team cohesion and communication. An ideal service should include psychological support for the professional team, identification of key workers, and development of individualized care plans. Conclusions Staff differed in their views about how to achieve optimal management for young adults, but emphasized the need for greater patient-centred care and a range of interventions appropriate for individual levels of need. They also wanted to increase their own skills and confidence working with this age-group. While these results reflect the views of staff working in only one diabetes centre, they are likely to reflect the views of professionals delivering care to individuals of this age; replication is needed to determine their generalizability.

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.

TAYLOR N., ABSOLOM K., SNOWDEN J. & EISER C., on behalf of the Late Effects Group Sheffield. (2012) European Journal of Cancer Care21, 52–58. Need for psychological follow-up among young adult survivors of childhood cancer Follow-up is recommended for survivors of childhood cancer. Decisions about care tend to be made in terms of physical health, but psychological late effects including post-traumatic stress disorder (PTSD) and symptoms (PTSS) are prevalent. We report prevalence of PTSD/PTSS in a UK cohort, self-care and implications for organisation of follow-up. Eligible survivors (n= 218) under regular follow-up were invited to complete measures of PTSD, late effects and self-efficacy. Information about late effects was also taken from medical notes. A total of 118 survivors responded (54.1%) and 108 (49.5%) completed questionnaires. Prevalence of clinical PTSD (13.9%) was comparable with US findings. Female subjects and those who reported more late effects reported more PTSD. In regression analyses, number of survivor-reported late effects (but not number-recorded in medical notes) and PTSS predicted self-efficacy. Significant numbers of survivors report PTSS but this is unrelated to diagnosis or treatment. Female subjects and those who reported more physical late effects also reported more PTSS. Decisions to discharge survivors from routine care must consider psychological well-being as well as physical late effects. We recommend routine psychological screening for all survivors of childhood cancer and suggest this can be acceptable to survivors and feasible in clinic.

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.

Background Haemopoietic stem cell transplantation (HSCT) is a life-saving but intensive procedure associated with potentially severe adverse late effects. We aimed to determine morbidity and health-related quality of life (HRQOL) in a sample of survivors aged 8–18 years at least 1 year post HSCT for paediatric acute leukaemia, compared with a non-transplanted group of survivors matched for age, gender, initial disease and time since treatment. Methods Families (N = 54; HSCT n= 29) recruited from four UK centres completed measures of child behaviour and school attendance, HRQOL and finances. Mothers completed measures of their own well-being. Clinical outcome data were extracted from medical records. Results Children in the HSCT group had significantly more late effects and had received more tests for vision, bone, dental and skin health, and thyroid, lung, and gonadal function than the non-transplanted group. HRQOL scores for the HSCT group were significantly lower in all domains compared with the non-transplanted group and population norms, but were not significantly related to clinical indices. Mothers in the HSCT group had significantly poorer mental well-being than population norms. Conclusion Significant morbidity and compromised HRQOL was found in survivors of HSCT. The burden of caring for a child after HSCT has a continuing toll on mothers' well-being.The importance of counselling families about possible long-term consequences is emphasized.

Background Diagnosis of a life-threatening condition has been linked to post-traumatic stress. However, only recently has it been acknowledged that positive outcomes including post-traumatic growth or benefit finding may also occur. The aim of our study was to extend previous work describing benefit finding among survivors of childhood cancer, by determining the contribution of demographic and medical variables and associations between child benefit finding and parent post-traumatic growth. Methods Survivors of any child cancer (leukaemia, central nervous system or solid tumour; age 12–15 years; completed treatment >2 years) were recruited from routine follow-up clinics and asked to complete questionnaires [Benefit Finding Scale for Children (BFSC), quality of life (QOL), post-traumatic stress (PTS), illness perception and optimism]. Parents completed parallel measures to describe their own post-traumatic growth (PTG), QOL, PTS and illness perception. Results Forty-eight survivors and parents completed questionnaires (response rate: 81%). The BFSC showed good internal reliability (alpha = 0.91). Diagnosis of leukaemia, greater optimism and reports that the illness still affects their life today were associated with higher scores on the BFSC among survivors themselves. For parents, perceptions of how much the illness still affects them emotionally was associated with PTG. There was no association between children's benefit finding and parents' PTG. Conclusions The BFSC is a useful and reliable instrument to assess positive outcomes after cancer in children. The extent to which survivors are optimistic and perceive on-going effects of the illness on their daily lives is significantly associated with the ability to find benefit after end of treatment.

Purpose. In police interviews children may be asked the same question many times. We investigated how the number of repetitions and the interval between those repetitions affected the accuracy and consistency of children’s responses. Methods. 156 children aged 4–9 years watched a staged event and were interviewed individually 1 week later. Children were asked eight open-ended questions, which were each repeated a further four times (making a total of forty questions). Half these openended questions could be answered from information in the event, and half were unanswerable (so children should have said ‘don’t know’ in response to these questions). The questions were repeated in gist form. The interval between an initial question and its repetitions was varied by use of other questions and twenty nonrepeated filler questions. The intervals between repetitions were immediate repetition, repetition after a delay of three intervening questions, after a delay of six intervening questions, and after ten or more intervening questions. Results. Over a quarter of children’s responses to repeated questions changed, usually resulting in a decline in accuracy, particularly after the first repetition. Subsequently, the number of repetitions and delay interval had little effect on responses to answerable questions although accuracy to unanswerable questions continued to decline. Conclusions. Question repetition had a negative affect on children’s consistency and accuracy. For unanswerable questions in particular, the more often a question was repeated the more likely children were to invent a response.

BACKGROUND: There is a lack of evidence regarding current screening practices for incipient ovarian failure in young women following gonadotoxic therapy and the most appropriate form of estrogen replacement. This study examined the (i) prevalence and management of ovarian failure and (ii) quality-of-life implications of early menopause (EM). METHODS: A medical case note audit for 288 women with a history of gonadotoxic therapy (aged 18-50 years) was conducted. Self-reported quality-of-life data were obtained from 178 (62%). RESULTS: Ovarian screening was recorded in 44% of medical case notes, and ovarian failure was documented for 35%. From the self-reported data, 89/178 (50%) women reported experiencing an EM/ovarian failure. Worse menopausal symptoms were negatively associated with both sexual activity [pleasure (r = 0.29, P < 0.01), discomfort (r = 0.50, P < 0.001) and habit (r = 0.22, P < 0.05)] and general quality of life (P = 0.01). Hormone replacement therapy is the most commonly prescribed estrogen preparation; however, 34% of women with EM/ovarian failure reported not taking any replacement therapy. CONCLUSIONS: Given the extent and impact of menopausal symptoms, further work is needed to establish systems for screening ovarian function and to determine appropriate and effective management of ovarian failure.

Background Smoking should be particularly discouraged among survivors of childhood cancer, who are at increased risk of adverse effects of the cancer and its treatment. We examined the extent of cigarette smoking, factors associated with being a current smoker, and age at initiation of regular smoking among adult survivors of childhood cancer and compared the survivors’ smoking habits with those of the general population. Methods We used data from the British Childhood Cancer Survivor Study (BCCSS), a population-based cohort of 17 981 individuals who were diagnosed with childhood cancer between 1940 and 1991 in Britain and had survived for at least 5 years after diagnosis. The 14 836 cohort members who were alive and aged 16 years or older up to September 2006 were eligible to receive a mailed questionnaire that ascertained smoking status and other factors. The general population data were from the 2002 General Household Survey in Britain. Logistic regression was used to investigate factors associated with being a current regular smoker and to compare the prevalence of current regular smoking in the study cohort with that in the general population. Cox regression was used to examine associations between explanatory factors and age at smoking initiation. All statistical tests were two-sided. Results Of the 10 326 childhood cancer survivors who returned completed questionnaires, 20.0% were current regular smokers and 29.8% were ever regular smokers, whereas in the comparable general population 28.1% were current regular smokers and 48.8% were ever regular smokers. Current regular smoking was more prevalent among survivors of Wilms tumor or Hodgkin lymphoma than survivors of a central nervous system (CNS) neoplasm; in those aged 10 – 14 years at diagnosis than 0 – 4 years; in those not treated with radiotherapy; in those in manual occupations; in those who were separated, widowed, or divorced; in those with lower educational attainment; and in those not currently on long-term regular hospital followup. Rates of smoking initiation were lower in women; in those treated with chemotherapy or radiotherapy; and in those with a third party – completed questionnaire. The rate of smoking initiation was highest among those diagnosed at 10 – 14 years of age. The odds ratio for being a current regular smoker among the survivors compared with the general population was 0.51 (99% confidence interval [CI] = 0.46 to 0.57). Survivors who smoked, smoked fewer cigarettes per day than smokers in the general population; the difference in the multivariable model was 1.5 fewer cigarettes per day (95% CI = 1.03 to 1.99). Conclusion The prevalence of smoking varies by subgroup among adult survivors of childhood cancer in the BCCSS but is substantially less overall than that in the general population.

Acute Lymphoblastic Leukaemia (ALL) is the most common form of childhood cancer. Despite good survival rates, quality of life (QOL) may be compromised, and children show mood and behaviour problems (MBP). We report a 2-year longitudinal study where mothers assessed their child's QOL and MBP ∼3 months after diagnosis with ALL (T1), 1 year (T2) and 2 years (T3) later. Mothers of 46 children (M age 7 years at T1) with ALL completed ratings of child's QOL (PedsQL™) and Mood and Behaviour Problems (MBP) at each time point; they also recalled change in MBP over the past year and anticipation of future change over the next year. QOL and MBP improved, especially from T1 to T2. Retrospective and serial measures of change were uncorrelated. Mothers’ optimism at T1 was a significant predictor of subsequent ratings, not only of current MBP but also QOL, up to 2 years later. Retrospective measures of change are not a substitute for serial measurements.

Survival rates for children with cancer have improved significantly, but lengthy and painful treatments compromise the quality of life of children and their families. The aim of this article is to describe children's behaviour and coping over the 2- or 3-year-course of treatment. We interviewed 32 mothers of children newly diagnosed with Acute Lymphoblastic Leukaemia (ALL) shortly following diagnosis, 1 and 2 years later. Thematic analysis was used to extract themes related to adjustment and behaviour. The results were organized separately for children in three age groups: 0—4 years, 5—9 years and 10—14 years. Mothers described children in the 0—4-year age group as adjusting well, and attributed this to their limited understanding and ability to integrate treatments into normal life. Children in the 5—9-year group were adjusting less well, experiencing social problems and worries about appearance. Older children (10—14 years) adjusted least well. Many withdrew socially and were concerned about the need to look and feel normal. These findings will be useful for parents and clinicians in identifying typical behaviours of children coping with ALL. They also have implications for the development of child-centred age-specific measures of quality of life in children treated for ALL.

Background Treatment of childhood cancer occurs over a 2- to 3-year period, with initial intense phases of chemotherapy followed by less severe treatment periods. From first diagnosis, families are encouraged by healthcare professionals (following government guidelines) to try to maintain a normal life. The aim of this paper is to contribute to our understanding of how 'normal' family life is compromised from the perspective of the families themselves during this period of extreme stress and concern for the health and well-being of their child. Methods This study was longitudinal and involved a cross section of 32 mothers of children recently diagnosed with acute lymphoblastic leukaemia (ALL) currently participating in the Medical Research Council ALL-97 randomized control trial. Mothers were interviewed at three time points (3–4 months post diagnosis, 15 and 27 months) using a semi-structured format with open-ended questions. A qualitative methodology was employed to analyse interview data using Thematic analysis. Results Mothers reported understanding the importance of achieving normal life, but described how this was difficult to realize. At first interview, mothers were optimistic that they could achieve the 'normal life' as advised by healthcare workers. At 12 and 24 months, although all mothers reported that life was not back to normal, there were differences in how they perceived this lack of normality. Whereas some families experienced frustration and disappointment, others had adjusted and managed to accept the new order. Conclusions Families felt encouraged on diagnosis to be told that despite the severity of the disease and treatment regime, a normal life was possible and should be pursued. Our findings indicate that over time, more concrete information is needed to guide parents through the treatment process in order to help them achieve this.

Background The development of instruments to measure child self-reported quality of life (QOL) is dependent on whether children can understand the concepts behind items. Researchers need more information on how children are interpreting and answering items. This paper aims to investigate the strategies school-aged children use to answer QOL items. Methods A generic 30-item QOL measure (the TedQL) was administered to 266 healthy children (5–6, 7–9 years old). Children were asked to ‘think aloud’ while answering a selection of 10 TedQL items (n = 4 ability, n = 4 social, n = 2 mood items), and their responses were recorded verbatim. Results The strategies children reported using when answering items were coded into five categories: (1) social comparisons; (2) stable character references; (3) concrete examples; (4) other reasons; or (5) no reason given. Concrete examples were used most frequently by children. Strategy type was dependent on age, with 7–9-year-olds reporting social comparisons and concrete examples more frequently than 5–6-year-olds. Five-to-six-year-olds gave no reasons for their response choices more frequently than 7–9-year-olds. Strategy type also differed by item type, with social comparisons used more frequently for ability items, and stable character references for social items. However, concrete examples were used consistently highly across ability and social items. Conclusions Children aged 5–9 years most commonly report using concrete examples of specific instances when answering QOL items. However, strategy use varies as a function of age and types of items. Our results highlight the importance of keeping in mind children’s developmental age when interpreting responses from child QOL instruments.

This chapter argues first that issues of working with children are unique. There are differences in the kinds of diseases that affect children, and critically in their abilities to answer questions and take part in research generally. Second, it describes some of the special considerations that need to be made when working with children, focusing on the advantages and disadvantages of using interviews, questionnaires or observational studies. Third, it identifies some key points for work with children in the future.

Childhood cancer survivors experience a wide range of late-effects. As survival rates improve, follow-up in paediatric clinics becomes less feasible, and alternative models of care have been proposed. In this study, satisfaction among those attending a traditional paediatric late-effects clinic was compared with a multi-disciplinary clinic in an adult setting. Survivors (adult clinic n=93, paediatric clinic n=105, age 16-39 years) completed measures of symptoms, understanding of vulnerability to late-effects, purpose of follow-up, satisfaction and number of topics discussed. Predictors of satisfaction were: number of topics discussed, greater understanding of the purpose of follow-up and sex. Females, and those reporting longer waiting time were less satisfied. Aspects of clinic organisation, including shorter waiting times and opportunities to discuss health concerns, are more important in determining patient satisfaction than clinic type. Survivors' understanding of the purpose of follow-up is also integral in determining satisfaction.

Aims: To review and make recommendations about the format and quality of health-related self-report measures for children aged 3–8 years. Methods: Literature searches used to identify measures of QOL, self-esteem, self-concept and mental health. The format (i.e., scale type, presentation style) and quality (i.e., item generation, reliability, validity, responsiveness) of measures were compared and evaluated. Results: Fifty three measures were identified: QOL (n = 25, 47%), self-esteem/concept (n = 15, 28%), mental health (n = 13, 25%). Likert scales were used most frequently to represent response choices (n = 34, 64%). The authors of 11 (21%) measures provided justification for their scale choice. Items were most commonly presented in written format (n = 24, 45%). Item content was generated from the respondent population in only 21 (40%) measures. Twenty-seven (51%) measures reported internal reliability between 0.70 and 0.90, and 12 (23%) reported reproducibility in this range. Although validity was reported for 48 (91%) measures, evidence for three or more aspects occurred for only 9 (17%). Eleven (21%) measures evidenced responsiveness to change. Conclusion: Authors should provide clearer evidence for reliability and responsiveness. Newly developed instruments need to meet established standards, and further studies should assess the impact of scale and presentation types on the psychometrics of measures.

OBJECTIVE: To examine the effect of age, scale, and item type on the reliability and reproducibility of children's quality-of-life (QOL) responses. METHODS: The TedQL (ability, social, and mood items) was administered to 266 healthy children (age range of 5-6 and 7-9 years) at two time points, comparing three rating scales (circles, faces, and thermometer). Children were given the same (n = 144) or different (n = 122) scales over time. RESULTS: Reliability for total QOL and ability items was highest for circles and for social items using the faces. Faces and thermometer scales showed highest reproducibility over time. Greater agreement over time across different scales was found between circles and faces (5-6 years) and thermometer and circles (7-9 years). CONCLUSIONS: For maximum internal reliability, circles are recommended for ability items and faces for social items. For maximum reproducibility over time, the thermometer is recommended for 5-6 years and faces for 7-9 years. Language: en

Prolonged disease-free survival is attainable in up to 90% of\ud patients presenting with early-stage Hodgkin’s lymphoma (HL)\ud (Henry-Amar and Joly, 1996). Current treatment usually involves\ud multiagent chemotherapy combined with limited field radio-\ud therapy in selected patients. However, until recently, the standard\ud radiotherapy regimen for supradiaphragmatic HL was the mantle\ud field (Deniz\ud et al\ud , 2003; Horwich and Swerdlow, 2004).\ud Young women who received mantle radiotherapy are at\ud increased risk of breast cancer (Swerdlow\ud et al\ud , 2000; Deniz\ud et al\ud , 2003; Travis\ud et al\ud , 2003; Horwich and Swerdlow, 2004; Kenney\ud et al\ud , 2004). The risk is proportional to radiation dose, and time\ud from treatment (Hancock\ud et al\ud , 1993a; Wolden\ud et al\ud , 1998).\ud Younger age at the time of treatment gives the greatest risk\ud (Hancock\ud et al\ud , 1993a; Bhatia\ud et al\ud , 1996). At 25 years of follow-up,\ud the cumulative risk of breast cancer for women treated between 10\ud and 19 years of age is reported as 15 – 33%, and for those treated\ud between the ages 20 and 29 years, 15 – 25% (Horwich and\ud Swerdlow, 2004). In 2003, the UK Department of Health launched\ud a ‘Patient Notification Exercise’ to inform patients of the increased\ud breast cancer risk. The exercise mandated recall of all women with\ud HL, who were diagnosed at or below the age of 35 from 1962\ud onwards. Mantle radiotherapy is associated with other long-term\ud complications including second malignancies, and disorders of the\ud thyroid, heart and lung (Morgan\ud et al\ud , 1985; Gustavsson\ud et al\ud , 1990;\ud Allavena\ud et al\ud , 1992; Gustavsson\ud et al\ud , 1992; Henry-Amar and Joly,\ud 1996). The aim of our study was to investigate the incidence of late\ud effects in women recalled in the UK ‘Patient Notification Exercise’.

Children surviving a brain tumour face major difficulties including learning problems, lengthy school absences and psychosocial problems, all of which can impact on school functioning. Our aims were to provide information for parents and teachers about the skills and resources of this group. Specifically, we aimed to: describe the special educational needs of these children; document the impact of diagnosis and treatment on school attendance; compare parent and teacher assessments of social, emotional and behavioural difficulties.Forty families agreed to participate (response rate = 58.82%). The children (19 males and 21 females) were aged from 6 to 16 years and had completed treatment at least 2 years previously (range = 2 years-12 years 5 months). Questionnaires (Strengths and Difficulties and school experience) were completed by mothers and teachers.Survivors were experiencing a wide range of physical, learning and interpersonal difficulties, according to parent and teacher reports. Almost half the children (n = 19) had ongoing neurological problems that were significant enough to require special help at school. Literacy and numeracy were the most common learning difficulties. Parents also rated brain tumour survivors as having more behavioural and emotional problems than would be expected from population norms. For example, survivors were rated as having more Total Difficulties (t = 6.86, P0.001), Emotional Symptoms (t = 8.82, P0.001), Hyperactivity (t = 2.25, P = 0.03), Peer Relationship Problems (t = 7.58, P0.001) and poorer Pro-social Behaviour (t = -3.34, P = 0.002) than would be expected from population norms. These problems were also seen to be having a significant impact on the child's functioning (t = 3.95, P0.001). Teachers rated these problems as less serious than parents.These children experience significant problems in school some time after diagnosis and when they are considered medically cured. Closer school-hospital liaison is essential to maximize integration and achievement in these children.

Background/Aims: The effects of growth hormone deficiency (GHD) on linear growth in children are well documented, but there is less convincing evidence regarding the impact on health-related quality of life (QOL). We examined QOL in children aged 8–16 years with acquired GHD following treatment for malignancy (AGHD) or idiopathic GHD (IGHD) on commencing growth hormone treatment (GHT) over 6 months. We adopted a longitudinal design involving consecutive patients and their families attending clinic over an 18-month period. Mothers and children were invited to complete questionnaires before GHT (T1) and 6 months later (T2). Methods: Mothers of 22 children (AGHD n = 14; IGHD n = 8) completed standardized measures of child QOL and behaviour. Children completed parallel measures of QOL, short-term memory tasks and fitness either in clinic or at the family home. Results: For children with AGHD, QOL was significantly below population norms at T1 and improved over time. For children diagnosed with IGHD, QOL at T1 was below, but comparable with population norms. QOL improved over time, though not significantly. Conclusion: GHT is potentially valuable for improving QOL in children, especially in cases of AGHD. We conclude that benefits of GHT for QOL need to be evaluated independent of different diagnostic groups.

Follow-up of survivors of childhood cancer is recommended to improve detection of late-effects, and provide individuals with information and advice. This study aimed to follow-up survivors of childhood cancer and report on their attitudes to current follow-up methods. Twenty-six survivors (13-25 years) of childhood cancer and their parent(s) attended focus groups (n = 7) to discuss views about follow-up care. Transcripts were analysed using interpretative phenomenological analysis (IPA). Three themes were identified: strategies to achieve a normal life (through playing down possibility of late-effects or careful monitoring of health); expectations about follow-up (facts and information, advice about self-care, everyday living, and psychosocial consequences) and preferences for different models of care. Given that some families had reservations about the benefits of follow-up, it is important that services address survivors' interests and meet their expectations. Changes to service delivery must take account of individual needs and expectations. Possible limitations of focus group methods (recruitment, bias reduction, methods of analysis and influence of other participants' views) are discussed.

Objectives Survival rates for childhood cancer have improved substantially partly as a result of national and international randomized clinical trials (RCT). However, the decision for families is complex and emotional. Our aim was to describe the views of mothers of children newly diagnosed with ALL regarding consent to randomized controlled trials. Design Qualitative interview to explore mothers knowledge, and reasons for involving their child in RCTs. Interviews took place in mothers’ homes. Participants Fifty mothers of children with newly diagnosed ALL (age 4–16 years; mean = 7.4) recruited through research nurses at outpatient appointments. Results All but three families had consented for their child to be treated in the RCT, although there was wide variation in their understanding of the aims, costs and benefits. Most mothers reported the aim of the trial to compare ‘old’ and ‘new’ treatments. Conclusion Despite detailed verbal and written information, mothers were poorly informed about the purpose of the trial, and possibility of side effects. Individual preferences for either standard or new treatment were routinely reported. The data raise questions about the extent to which families give truly informed consent to recruitment of their child to an RCT.

Context Only a patient and his or her family can judge many of the most important aspects of the doctor–patient interaction. This study evaluates the feasibility and reliability of children and their families assessing the quality of paediatricians' interactions using a rating instrument developed specifically for this purpose. Methods A reliability analysis using generalisability theory on the ratings from 352 doctor–patient interactions across different speciality clinics. Results Ratings were normally distributed. They were highest for ‘overall’ performance, and lowest for giving time to discuss the families' agenda. An appropriate sample of adults' ratings provided a reliable score (G = 0.7 with 15 raters), but children's ratings were too idiosyncratic to be reproducible (G = 0.36 with 15 raters). Conclusions and further work Accompanying adults can provide reliable ratings of doctors' interactions with children. Because an adult is usually present at the consultation their ratings provide a highly feasible and authentic approach. Sampling doctors' interactions from different clinics and with patients of both genders provides a universal picture of performance. The method is ideal to measure performance for in-training assessment or revalidation. Further work is in progress to evaluate the educational impact of feeding ratings back to the doctors being assessed, and their use in a range of clinical contexts.

To validate PedsQL for children in public care and develop an 'in-care' module.Questionnaire development and validation. Questionnaires were completed in placement. A total of 69 children in public care (aged 8-18 years) and their carers were recruited through routine paediatric assessments, and 662 children not in public care were recruited from local schools.Self- and proxy-report versions of PedsQL generic module and the 'in-care' module.Cronbach's alpha for the generic module ranged from 0.66 to 0.88 and from 0.74 to 0.90 for self- and proxy-report respectively. Lower scores were reported for children in care compared with peers living at home for proxy- and self-report. Proxy- and self-report correlation ranged from 0.43 to 0.60 (P0.001). Cronbach's alpha for the in-care module was 0.87 and 0.91 for self- and proxy-report respectively. Proxy- and self-report scores showed significant correlation with generic module scores. The highest correlations were seen with sub-scales measuring Psychosocial Functioning (e.g. Emotional Functioning: Pearson's r = 0.67 and 0.59, P0.001 for self- and proxy-report respectively). Proxy- and self-report correlation was 0.45 (P0.001).We found PedsQL generic module and the newly developed 'in-care' module to have excellent internal reliability for self- and proxy-report. Validity was established for both measures and significant correlation found between child and proxy ratings. Although further testing of the measures is recommended, both have potential value in assessing the success of placements and could provide a reliable and valid tool for individual patient analysis in clinical practice and for research with this group.

Background The present study was conducted as part of an ongoing project to develop an innovative educational intervention for young people with type 1 diabetes. We aimed to seek the views of children and adolescents with type 1 diabetes and their parents regarding (i) the acceptability of the new programme and (ii) practical aspects regarding course design and delivery. Methods Twenty-four children and 29 parents attended one of eight separate focus groups. Semi-structured interview schedules were developed around two main areas of discussion: views on the education programme; and views on the design and delivery of current and future education. Discussions were tape-recorded and transcribed, before undergoing systematic qualitative analysis. Results Participants agreed that the proposed intervention was feasible, and were enthusiastic that it could improve quality of life and ‘normality’. Potential problems included self-management during school-time and parental anxiety. In terms of course design/delivery, participants emphasized the need to maximize enjoyment on the course (e.g. integrating fun and practical sessions, holding parts of the course outside of the clinic setting), and encourage effective learning and adherence to the regimen (e.g. including separate parent education, and using IT-based reference material). Conclusions The qualitative methodology proved an effective way of eliciting child and parent views and informing the development of the proposed intervention. These findings can now be incorporated into the development of the education programme.

We describe the Quality of Life (QoL) and IQ of survivors of retinoblastoma (Rb), both in relation to the normal population and between subgroups of Rb patients differing in relative risk (i.e. unilateral vs. bilateral disease). The sample included 54 children (28 males, age-range 8-16 years) and their mothers. Mothers completed standardized questionnaires to report their own QoL and that of their child. Children completed a brief IQ test. Compared with population norms, mothers reported lower levels of QoL for their child on total QoL and for sub-scales measuring Physical and Psychosocial function. Mothers reported their own QoL to be comparable or higher than norms on all but one of eight sub-scales (energy/vitality). Compared with population norms, children with no visual impairment scored in the normal range for tasks measuring Verbal IQ, but below the mean on tasks measuring Performance IQ. According to their mothers, survivors of Rb have excellent school attendance and take part in most school activities. However, based on standardized questionnaire, they show compromised QoL. We consider that excellent survival rates in Rb are matched with good QoL according to mothers' report.

Many parents find decisions about what to tell their child with cancer difficult. Open communication is generally considered the best policy and most health care professionals encourage parents to talk openly and honestly about the illness. However, parents differ in their views about what to tell the child. In this study 55 parents of children (36 boys and 19 girls, mean age = 7.33 years) newly diagnosed with acute lymphoblastic leukaemia (ALL) were interviewed about (i) the child's reactions and behaviour following diagnosis, (ii) their views about what to tell their child and (iii) factors influencing parents' communication with the child. Interviews were analysed using thematic analysis. Most children showed behavioural and mood difficulties after diagnosis. Older children were given more information. In addition, parents' perceptions of childhood cancer affect the way they communicate with their child. These findings may be used to inform training packages in order to facilitate improved communication amongst health professionals.

Background Dexamethasone is increasingly used as the steroid of choice in trials for standard risk children with acute lymphoblastic leukemia (ALL). Improvements in event-free survival (EFS) have been attributed to lower CNS relapse rates, However, there are concerns that dexamethasone may be more toxic than previous conventional therapy with prednisone. Such toxicity raises questions about the implications for child neuropsychological function and HRQOL. Patients participating in the UK ALL 99/01 trial were randomized to receive dexamethasone or prednisone as their steroid in induction and maintenance chemotherapy. We compared the HRQOL and behavior in children randomized to receive both these agents. Procedure Standardized questionnaires to assess parent and child HRQOL at 3–6 months after diagnosis (T1) and 1 year later (T2) completed by mothers in family homes. Forty-five mothers of a child with ALL (32 male, 13 female; average age at T1, 7 years 3 months; at T2, 8 years 3 months) completed HRQOL questionnaires. Results For the total group, child HRQOL scores improved and behavior problems decreased significantly from T1 to T2. Comparison of HRQOL scores between the 17 children randomized to dexamethasone and 28 children randomized to prednisone showed no significant differences. The rate of improvement in HRQOL from T1 to T2 did not differ between children randomized to dexamethasone or prednisone. Conclusions Dexamethasone is increasingly used in the treatment of ALL and has been linked with improved survival rates. Long-term use of dexamethasone raises questions about neuropsychologic toxicity. Although HRQOL increased significantly over the year for all children, the extent of this increase did not differ by chemotherapy. These results should contribute to lessened concerns about use of dexamethasone in the treatment of ALL. © 2005 Wiley-Liss, Inc.

To be useful in clinical trials, quality of life (QOL) measures must meet basic criteria related to psychometric properties (reliability, validity, and sensitivity), length and acceptability to patients, and availability of parallel child and proxy versions. This paper examines the adequacy of several current measures, with special reference to childhood cancer. We identified 10 such measures of varying length, age-appropriateness, and content. We also discerned a number of obstacles to inclusion of QOL measures in trials. These include clinician bias, financial cost, and time required to inform families and to obtain informed consent from parents. We noted some methodological difficulties associated with measuring QOL over time. These include allowing for maturation and accounting for response shift, or children's propensity to change their internal standards for assessing QOL.

This article describes the long-term impact of childhood brain tumours on eight families, using an interpretative phenomenological analysis (IPA) approach. Two major themes emerged from the data: the impact of the illness and treatment on the child’s current functioning, and how parents live day-to-day with the threat of future relapse or further long-term physical and psychological complications. A number of subcategories emerged from these themes, including the difficulties obtaining special educational needs, the manner in which children overcame their physical limitations and the problems caused by peer exclusion and bullying. In discussing the way in which parents and children cope with the problems caused by the tumour, and the possible clinical implications that have emerged from the data, we have drawn upon a number of theoretical concepts, derived from discrepancy theory and coping theory.

Survivors of childhood cancer are at risk of compromised physical and psychological functioning as a result of disease and treatment. However, survivors experiencing similar physical problems vary considerably in their self-reported Quality of Life (QOL) raising questions about the processes underlying adjustment and maintenance of QOL. Seventy seven survivors of either Acute Lymphoblastic Leukaemia (ALL) or tumours of the Central Nervous System (CNS) completed a standardised measure of QOL and semi-structured interview. Based on theoretical assumptions that QOL reflects a difference between what survivors can, and would like to be able to do, interviews were coded for reports of discrepancies and any coping strategy employed. Survivors of tumours of the CNS reported worse QOL and more discrepancies than survivors of ALL. A significant relationship was found between QOL measured by questionnaire and number of reported discrepancies. Five kinds of strategies to reduce discrepancies were identified: changin...

Background. In order to optimize glycaemic control, substantial numbers of people with type 2 diabetes may require transfer from oral medication to insulin therapy. Although insulin conversion is traditionally a specialist secondary care function, as nursing roles change and expand there is growing pressure for this to be performed within primary care. However, little is known about the potential barriers to such a change, particularly from the standpoint of the frontline staff involved. Aims. The study aimed to explore the views of practice nurses in the United Kingdom (UK) about converting diabetic patients from oral hyperglycaemic agents to injected insulin within primary care, and to investigate what structures and resources might be useful in supporting such a change. Methods. Semi-structured interviews were conducted with 25 practice nurses, and interpreted using content analysis to extract key conceptual themes from the transcribed interview texts. Findings. Most of the nurses felt that converting to insulin in primary care had considerable benefits for patients. However, issues of time, training, confidence about performing the change, and the adequacy of support systems, both for patient and nurse, emerged as the main perceived barriers to performing insulin conversions in primary care. Worries about legal and accountability issues surrounding the nurse prescribing elements were also raised. Conclusions. Where insulin conversion within primary care is being considered, it is suggested that specific training is provided for practice nurses and general practitioners, protected time is made available, and a team-working approach is fostered to prevent isolation and boost patient support. Formal mentoring or supervision support for practice nurses may also help them to adapt to this new approach. Limitations. These findings are based on the views of nurses from a single UK locality, and so widespread consultation is recommended before applying them in other settings.

Aims To determine differences in ratings of quality of life (QOL) depending on respondent (mother or child) and implications for the validity of measures of QOL, and interpretation of scores. Method Forty-five survivors of acute lymphoblastic leukaemia (ALL) and 23 survivors of central nervous system (CNS) tumours and their mothers completed a generic measure of QOL: the Pediatric Quality of Life Inventory TM Version 4.0 (PedsQLTM4.0; Varni et al., 2001). Results Although correlations between mother and survivor ratings were largely moderate to good, further analyses showed that mothers reported QOL to be worse than survivors. Both mothers and survivors rated physical health worse than psychological health, and survivors of a CNS tumour had poorer QOL than survivors of ALL. Although survivors of ALL reported reasonably good physical health, their psychosocial health was more adversely affected. Conclusions Implications for further use of the PedsQLTM 4.0 in the clinical or research context are discussed. Incidental findings highlight some limitations of the PedsQLTM4.0 for work with this population.

Questionnaires to assess expectations of future health were administered to 382 patients with diabetes immediately before and after attending an annual check-up. When considering their future health status and interpreting feedback from clinicians, diabetic control appeared to be a more important criterion for Type 1 than Type 2 patients. Both patients and clinicians briefly recorded the topics they felt had been discussed during the consultation. Comparing the two sets of records revealed significant concordance, within the Type 1 but not the Type 2 sample, between patients and clinicians with respect to whether patients had been given good news. Our findings emphasize the importance of distinguishing Types 1 and 2 diabetes in accounts of patients’ expectations and motivation for self-management.