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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

BACKGROUND & AIMS: This systematic review was conducted to identify the following: (1) generic and disease-specific measures used to assess health-related quality of life (HRQOL) in patients with hepatocellular carcinoma (HCC); (2) HRQOL in patients with HCC compared with those with chronic liver disease and the general population; (3) effects of treatment (liver surgery, hepatic artery transcatheter treatment, and radiotherapy) on HRQOL; (4) relationships between physical variables, symptoms, and HRQOL; (5) relationships between demographic characteristics, psychological variables, and HRQOL; and (6) effects of psychological interventions on HRQOL. METHODS: Computerized databases including British Nursing Index, Cumulative Index to Nursing and Allied Health Literature, Cochrane library, PsychoINFO, and Pubmed were searched. RESULTS: Thirty-six articles were identified. The results suggested the following. Four original articles described the development of standardized measures to assess liver cancer-specific HRQOL. Patients with HCC reported worse physical, emotional, and functional HRQOL, but better social/family HRQOL compared with the general population. HRQOL improved after liver surgery, hepatic artery transcatheter treatment, and radiotherapy. Better liver function, early stage of disease, and no recurrence were correlated positively with better HRQOL; and pain, fatigue, nausea, and performance status were associated with worse HRQOL. HRQOL was correlated negatively with depression, uncertainty, chance health locus of control, and positively with satisfaction with medical services. Psychosocial interventions may reduce negative feelings and enhance HRQOL. CONCLUSIONS: Future work should explore the effects of psychological variables on HRQOL and the interaction between physical and psychological variables in relation to HRQOL.

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

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

Psychosocial issues and quality of life.

The age group 20 to 39 years includes survivors of childhood cancer and those diagnosed with and treated for cancer during young adult life. Much of what is known about the psychosocial consequences of cancer in this age range is based on work involving survivors of cancer in childhood. We argue that the impact of cancer in young adults is different from experiences during childhood. Key developmental tasks include negotiation of independence from the nuclear family, achievement of intimacy, and generativity (concern to establish and guide the next generation). All of these tasks can be challenged by cancer, and have led to concern about health-related quality of life. Given the diverse ways in which cancer can compromise young adults, there is a need for timely interventions. Attempts to improve knowledge, re-integrate into normal life and work, and promote self-care (eg, awareness of risks associated with smoking) are described.

Ovarian failure following cancer treatment: current management and quality of life.

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.

Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF).

BACKGROUND: Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. METHODS: This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQLtrade mark quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. RESULTS: A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQLtrade mark. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). CONCLUSION: The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report.

Mothers' explanations of communicating past health and future risks to survivors of childhood cancer.

Mothers of survivors of Retinoblastoma (Rb) experience unique challenges communicating with their child about the condition. Children are mostly diagnosed within their first year but the consequences continue into young adult life. Here 39 mothers of Rb survivors (23 males, mean age = 10.26 years) were interviewed about their experiences. Mothers were asked about communication with their children about Rb, and future health risks. Interviews were analysed using thematic analysis. Mothers reported that they had informed children about past diagnosis and treatment but had spoken less about genetic risk or risk of secondary cancer. The child's age and information-seeking behaviour were associated with mothers' disclosure, along with mothers' perceptions that information would facilitate child coping. Findings suggest that mothers may need more guidance during follow-up care in communicating about the disease and its consequences for future health. Medical staff should also take extra care to ensure that mothers are aware of genetic counselling services and how to access them before the child is discharged from specialist care.

Health behaviours in childhood cancer survivors: a systematic review.

AIM: To review (1) prevalence and predictors of risk behaviours especially smoking and (2) values of interventions to reduce risk behaviours in childhood cancer survivors. METHOD: A systematic search of four databases (OVID Medline (1966 to May week 2, 2006), CINAHL, EMBASE, and Pubmed (US Library of Medicine and National Institute of Health)) for articles published between January 1990 and May 2006. RESULTS: Twenty-three eligible articles. Incidence of risk behaviours are comparable with, or lower than the general population and controls. Socio-demographic (age, socio-economic status, diagnosis, ethnic group) and psychological variables (perceived vulnerability) predict risk behaviour. Improved knowledge and awareness of vulnerability have been found after interventions, but no changes in health behaviours. CONCLUSION: This review illustrates an optimistic picture of low participation in substance use amongst survivors, although based mainly on smoking. However, smoking might not be the major problem for survivors and attention must also be directed to other health behaviours including exercise and healthy diet.

Long term survivors of childhood cancer: cure and care. The Erice statement.

The number of subjects that have successfully completed treatment for a cancer diagnosed during childhood and are entering adulthood is increasing over time. Members of the International Berlin-Frankfurt-Munster (I-BFM) Early and Late Toxicity Educational Committee (ELTEC) invited 45 paediatric cancer experts (representing oncologists, psychologists, nurses, epidemiologists, parents, and survivors) from 13 European countries (with five additional experts from North America) to Erice, Sicily (from October 27 to 29, 2006) to discuss the circumstances in which the word 'cure' should be used when speaking about children with cancer, and when and why continuing follow-up and care may be required. The objective of the gathering was to generate from the personal and professional experience of the participants an overview statement of the group's philosophy of cure and care of survivors of childhood cancer. The ten points reflect what the group considers essential in the survivors' cure and care.

Reassurance following breast screening recall for female survivors of Hodgkin's lymphoma.

Female survivors of Hodgkin's lymphoma (HL) treated with mantle radiotherapy experience increased breast cancer risk related to radiation dose and age at diagnosis. In 2003, the Department of Health (DoH) in the UK recalled patients to explain this risk and offer screening. The aims of this paper are to describe women's emotional responses and knowledge of their personal risk following the recall. Women were interviewed before risk counselling and breast screening (Time 1, n=56) and again following screening and results (Time 2, n=50). Questionnaire measures of quality of life, anxiety, depression and cancer worries were completed at Time 2. No cases of breast cancer were identified. After the recall, 64% had learned more about late effects and 76% were reassured about their health. All but one woman intended to attend future screening. Women are keen to take advantage of screening and experience relatively little distress.

Children's behaviour following diagnosis of acute lymphoblastic leukaemia: a qualitative longitudinal study.

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.

Predictors of clinic satisfaction among adult survivors of childhood cancer.

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.