Prospective evaluation of quality of life in children treated in UKALL 2003 for acute lymphoblastic leukaemia: A cohort study.

BACKGROUND: Health-related quality of life (HRQoL) from diagnosis until end of treatment for children with acute lymphoblastic leukaemia was investigated, examining effects of age, gender, risk-stratified treatment regimen, and therapy intensity (one vs. two 'delayed intensifications' [DIs]). METHOD: In a multi-centre prospective study, parents reported their child's generic and disease-specific HRQoL and their own care-giving burden at five time points. From 1,428 eligible patients, 874 parents completed questionnaires at least once during treatment. RESULTS: At each time point, generic HRQoL was significantly lower than equivalent norm scores for healthy children. HRQoL decreased significantly at the start of treatment, before recovering gradually (but remained below pre-treatment levels). Parents reported that older children worried more about side effects and their appearance, but showed less procedural anxiety than younger children. Concern for appearance was greater among girls than boys. Compared to Regimen B (i.e. additional doxorubicin during induction and additional cyclophosphamide and cytarabine during consolidation chemotherapy), patients receiving Regimen A had fewer problems with pain and nausea. There were no statistically significant differences in HRQoL by number of DI blocks received. INTERPRETATION: HRQoL is compromised at all stages of treatment, and is partly dependent on age. The findings increase understanding of the impact of therapy on children's HRQoL and parental care-giving burden, and will contribute to the design of future trials.

Preferences for long-term follow-up care in childhood cancer survivors.

Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of late effects. We aimed to describe preferences for different organisational aspects and models of follow-up care among Swiss childhood cancer survivors, and characteristics associated with preferences for different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16 years), registered in the Swiss Childhood Cancer Registry (SCCR), and Swiss resident, who previously participated in a baseline survey. They received questionnaires to assess attendance and preferences for follow-up (rated on 4-point scales, 0-3). Clinical information was available from the SCCR. Survivors (n = 314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher than supportive reasons (p < .001). They rated checking for cancer recurrence (mean = 2.78, SD = 0.53) and knowing about risks for my children most important (mean = 2.22, SD = 0.83). They preferred to attend a children's hospital (mean = 1.94, SD = 1.11), adult hospital (mean = 1.86, SD = 0.98) or general practitioner (mean = 1.86, SD = 1.01) rather than a central specialised late effects clinic (mean = 1.25, SD = 1.06, p < .001), and be seen by paediatric (mean = 2.24, SD = 0.72) or medical oncologist (mean = 2.17, SD = 0.69). Survivors preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors' preferences should be considered to ensure future attendance.

Effectiveness of the Kids in Control of Food (KICk-OFF) structured education course for 11-16 year olds with Type 1 diabetes.

AIM: To assess the effect of a 5-day structured education course (Kids in Control of Food; KICk-OFF) on biomedical and psychological outcomes in young people with Type 1 diabetes. METHODS: This was a cluster-randomized trial involving 31 UK paediatric centres. Participants were recruited prior to stratified centre randomization. Intervention centres delivered KICk-OFF courses, whereas control centres delivered usual care. Participants were 11-16 years of age and had Type 1 diabetes for at least one year. The KICk-OFF course was delivered by trained educators to eight participants per course. Glycaemic control and quality of life were measured at baseline, 6, 12 and 24 months. Secondary outcomes were hypoglycaemia, ketoacidosis, fear of hypoglycaemia and diabetes self-efficacy. RESULTS: Three hundred and ninety-six participants provided baseline data (199 intervention and 197 control). At 6 and 12 months the intervention group showed significantly improved total generic quality of life scores compared with controls (baseline: 80 vs. 82; 6 months: 82 vs. 82; P = 0.04). Across the whole intervention group mean HbA1c levels were not significantly different from controls; baseline HbA1c mean (95% confidence interval), 78 mmol/mol (75-81) vs. 76 mmol/mol (74-79) [9.3% (9-9.6%) vs. 9.1% (8.9-9.4%); 24 months: 77 mmol/mol (74-79) vs. 78 mmol/mol (75-81) (9.2% (8.9-9.4%) vs. 9.3% (9-9.6%)], adjusted mean difference, -2.0 mmol/mol (6.5-2.5) [2.3% (-2.7% to 2.4%)], P = 0.38. CONCLUSIONS: Attending a KICk-OFF course was associated with significantly improved total quality of life scores within 6 months. Glycaemic control, as measured by HbA1c , was no different at 24 months. (Clinical Trial Registry No: ISRCTN3704268).

Quality of life, support and smoking in advanced lung cancer patients: a qualitative study.

BACKGROUND: Lung cancer is the most common cancer and smoking is the principal cause. Due to poor survival rates, symptom palliation and promotion of health-related quality of life (HRQoL) are primary outcomes for lung cancer patients. Given the established relationship between smoking and lung cancer, patients who have smoked may feel stigmatised or guilty after diagnosis, and more pessimistic about their illness and likely outcomes. This may have adverse implications for HRQoL. OBJECTIVES: We explored HRQoL and support experiences among newly diagnosed patients with advanced lung cancer. DESIGN: Semistructured interviews were conducted with nine patients and analysed using interpretative phenomenological analysis. RESULTS: Patients described the physical, emotional and social impact of disease on HRQoL. Fear of compromising their immune system and adjusting to new relationship roles had a wide-ranging effect on patients' HRQoL. Patients acknowledged links between lung cancer and smoking but some continued to smoke. They were sensitive to the opinions of medical staff about smoking especially those who continued to smoke or recently quit. CONCLUSIONS: We conclude that staff should give clearer advice about the adverse implications of continued smoking. We discuss the potential value of diagnosis as a teachable moment for promoting smoking cessation among patients and family members.

How standard is standard care? Exploring control group outcomes in behaviour change interventions for young people with type 1 diabetes.

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. 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. MAIN OUTCOME MEASURES: Standard care descriptions, standard care quality, and relationships between standard care quality with medical and psychological outcomes. 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. 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.

Medical and psychological outcomes for young adults with Type 1 diabetes: no improvement despite recent advances in diabetes care.

AIM: To assess medical and psychological outcomes among young people with Type 1 diabetes and to compare medical outcomes with a previous audit. METHODS: An observational study in two diabetes clinics for young adults (aged 16-21 years) in Sheffield, UK. Young people (n = 96: 81.4% response rate) with Type 1 diabetes (diagnosed > 6 months) completed measures of depressive symptoms, anxiety and disordered eating and consented for their medical records to be consulted. RESULTS: Mean HbA1c (86 ± 23 mmol/mol; 10.0 ± 2.1%); was comparable with that reported previously and considerably higher than recommended (< 58 mmol/mol or 7.5%). Screening rates were improved and non-attendance was lower than previously reported, but levels of non-proliferative retinopathy have increased. Microvascular complications are present in 46.9% of those diagnosed more than 7 years. Elevated levels of disordered eating were reported by 35.1%. Those scoring above cut-off levels for clinical anxiety (26.6%) and depression (10.9%) are comparable with other work with young people with Type 1 diabetes. CONCLUSIONS: Despite technological advances and improvements to delivery of care, HbA1c remain above recommended levels in a significant proportion of young people, many of whom already have microvascular complications. We need to learn from European centres who achieve better results, improve transition from paediatric care, integrate mental health support with diabetes care provision and take into account young people's views about clinic.

Implications of sperm banking for health-related quality of life up to 1 year after cancer diagnosis.

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)). METHODS: Questionnaires were completed by 91 men (response rate=86.67%) at T1 and 78 (85.71% response rate) at T2. 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. 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.

Using the Medical Research Council framework to develop a complex intervention to improve delivery of care for young people with type 1 diabetes.

AIMS: We describe how we have used the development phase of the Medical Research Council (MRC) Guidelines to construct a complex intervention to improve physical and psychological health among young people (16-21 years) with Type 1 diabetes. METHODS: We consulted previous reviews where available and conducted systematic searches of electronic databases to determine physical and mental health among the population, audited medical records, surveyed self-reported psychological health among our clinic population; and interviewed staff (n = 13), young people (n = 27) and parents (n = 18) about their views of current care. RESULTS: Our audit (n = 96) confirmed a high HbA1c [86 mmol/mol (10.0%)] and one third (36.1%) reported significant eating problems. Young people did not attend 12% of their clinic appointments. Staff described difficulties communicating with young people who wanted staff to take account of their individual lifestyle when giving information. CONCLUSION: Based on the findings of the systematic reviews and our audit, we concluded that there was sufficient evidence to justify development of a model of care specific to this age group. The components of the complex intervention include changes to standard care, an optional 5-day self-management course directed at young people and a separate family communication programme. The MRC Guidelines provided a valuable structure to guide development and evaluation of this intervention.

Implications of parent and child quality of life assessments for decisions about growth hormone treatment in eligible children.

OBJECTIVE: To determine differences between parents and children in ratings of child health-related quality of life (HRQL) prior to growth hormone treatment. METHOD: HRQL measures were collected from 144 children and their caregivers. Inclusion criteria were aged between 10 and 16 years, diagnosed with Turner's syndrome, acquired or idiopathic growth hormone deficiency (AGHD or IGHD) and eligible to begin human GH treatment (GHT), or non-growth hormone deficient (GHD) short stature. RESULTS: Parents rated children to have poorer physical and psychosocial HRQL than children rated themselves. Differences depended on the measure used. Parents rated children with IGHD and non-GHD short stature better than children rated themselves, but they rated children with AGHD or Turner's much worse than children rated themselves in terms of physical but not psychosocial functioning. CONCLUSIONS: Decisions to prescribe GHT should include children's perspectives of HRQL whenever possible. Differences between parents and children are most likely in conditions that involve more complex medical needs (AGHD and Turner's). Generic and disease-specific HRQL measures may vary in sensitivity to HRQL differences between groups. More work is required to evaluate HRQL among younger children.

Eating problems in adolescents with Type 1 diabetes: a systematic review with meta-analysis.

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.

Prevalence of depression among young people with Type 1 diabetes: a systematic review.

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 HbA(1c) 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 HbA(1c) 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 HbA(1c) 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 HbA(1c) 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.

Monitoring fertility (semen analysis) by cancer survivors who banked sperm prior to cancer treatment.

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 = 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.

Finding out about sperm banking: what information is available online for men diagnosed with cancer?

Sperm banking is routinely offered to men where there is a risk of infertility following cancer treatment but uptake is lower than expected. Since these men may turn to the internet for information, we used the search engine www.google.com to identify the material available about sperm banking and fertility preservation options. Sixty-six resources (NHS/Private Clinic, Charity, Press Releases, General and Forums/Blogs) fulfilled the criteria for inclusion and were examined for quality including readability, layout and content. The most frequently reported information related to: (1) effects of cancer treatment on fertility (77.3%); (2) reasons to bank sperm (69.7%); and (3) fertility recovery after treatment (57.6%). Information about maintaining contact with the sperm bank (18.2%) and disposal of banked samples (10.6%) was less often included. The quality of information available on the Internet about sperm banking was variable. The readability of all resources was assessed as 'fairly difficult', i.e. reading skills required were too complex for the average member of the public to understand. Furthermore, visual presentation of material (e.g. lay out) did not facilitate easy reading. More attention should be given to information about longer-term issues, such as fertility recovery and the use or disposal of banked sperm.

Working with young adults with Type 1 diabetes: views of a multidisciplinary care team and implications for service delivery.

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.

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 legacy of sperm banking: how fertility monitoring and disposal of sperm are linked with views of cancer treatment.

BACKGROUND: Sperm banking is recommended for all men before cancer treatment, which carries a risk of long-term gonadal damage. However, relatively few men take up the offer. Among them, few attend for fertility monitoring or agree to sperm disposal where fertility recovers. Sperm banks are therefore burdened by long-term storage of samples that may not be needed for conception, with implications for healthcare resources. The aims here were to determine the views of men regarding personal benefits of sperm banking, and the advantages and disadvantages of fertility monitoring and disposal in the longer term. METHODS: Semi-structured interviews were conducted with 19 men who were diagnosed with cancer and had banked sperm at least 5 years previously. Men were asked to recall their experiences from diagnosis to the present time, focusing on the consequences for their fertility. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis. RESULTS: Results are discussed in relation to decisions surrounding banking sperm, fertility monitoring and attitudes to disposal of banked sperm. Complex attitudes were identified, with men's views reflecting their understanding of their current and future fertility and the possible trajectory of cancer itself. Men are overwhelmed by information on diagnosis and fail to understand the implications of cancer treatment for their future fertility. CONCLUSIONS: On diagnosis, men are given large amounts of information about cancer and treatment but fail to understand the longer-term implications of sperm banking. These implications need to be specifically addressed at subsequent appointments in order to optimize fertility monitoring and timely disposal of sperm samples.

Gender differences in self-reported late effects, quality of life and satisfaction with clinic in survivors of lymphoma.

OBJECTIVES: Gender differences in perceived vulnerability to late effects and views about follow-up among cancer survivors have received little attention. As lymphoma affects both genders similarly, we compared the consequences of cancer (late effects, perceived vulnerability and quality of life (health-related quality of life (HRQoL)), and satisfaction with clinic visits between genders. METHODS: A cohort of 115 younger adults (18-45 years, >5 years disease-free survival), who had been treated for lymphoma participated. Questionnaires (n = 91) were completed before and after (n = 62) routine consultant-led appointments. Survivors (n = 24) without appointments were recruited by post. Questionnaires included HRQoL, late effects, perceived vulnerability, issues survivors wanted to discuss and reported discussing in clinic, time waiting in clinic and consultation satisfaction. RESULTS: There were no gender differences in number of self-reported late effects or perceived vulnerability. Men with more late effects reported worse psychological HRQoL (r = 0.50, p<0.001). While men wanted to discuss more topics than they did, women were able to discuss the topics they wanted (ANOVA, p = 0.01). Multiple regression analyses showed a shorter wait in clinic (r = -0.46, p = 0.009) and discussing more topics (r = 0.34, p = 0.06) explained 30.6% of the variance in consultation satisfaction for men. CONCLUSIONS: Issues surrounding follow-up provision are increasingly important given the length of survival in young adults following treatment for lymphoma. Men may experience poor psychological well-being due to distress about unanswered concerns. Consideration of their concerns should be prioritised, given that satisfaction and ultimately continued attendance at clinic and HRQoL may be dependent on the extent to which follow-up meets survivors' expectations.

Clinical outcomes and health-related quality of life (HRQOL) following haemopoietic stem cell transplantation (HSCT) for paediatric leukaemia.

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.

Health-related quality of life and financial impact of caring for a child with Thalassaemia Major in the UK.

BACKGROUND: Thalassaemia Major (TM) is a serious condition characterized by life-long dependence on blood transfusions and chelation therapy. Our aim was to determine health-related quality of life (HRQOL) in children with TM living in the UK, and the impact of caring for a child receiving National Health Service treatment on family finances. METHODS: This was a cross-sectional assessment of HRQOL in children (n= 22) with TM aged 8-18 years. Children were recruited from three UK Paediatric Haematology and Bone Marrow Transplant centres. Mothers completed measures of their child's HRQOL [PedsQL 4.0 (Measurement Model for the Pediatric Quality of Life Inventory, James W. Varni PhD, PedMetrics, Quantifying the Qualitative SM, Copyright 1998-2009)] and behaviour (Strengths and Difficulties questionnaire), and the impact of caring for the child on family finances. RESULTS: Child behaviour was within the normal range but child HRQOL was significantly lower than population norms. Family financial concerns associated with TM were associated with poorer child HRQOL (P= 0.020). CONCLUSIONS: Thalassaemia Major poses a considerable challenge to child HRQOL, well documented in areas of the world where TM is prevalent. Despite the availability of National Health Service care and financial benefits our study suggests a similar burden in the UK.

Benefit finding in survivors of childhood cancer and their parents: further empirical support for the Benefit Finding Scale for Children.

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.