Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being (original) (raw)
Related papers
SAGE Open, 2013
The present study aims to investigate the relationship between severity of late effects and subjective quality of life of childhood cancer survivors in different age brackets. The sample consisted of 147 cancer survivors (70 boys and 77 girls) aged 8 to 18 who were in remission 2 to 5 years. The analyses were carried out separately for younger (8-12 years) and older (13-19 years) age groups. Cancer survivors were asked to complete Minnesota-Minneapolis Quality of Life Instrument (MMQL) as well as other methods of measuring involvement in everyday life activities and parent-child interactions Social And Health Assessment (SAHA) were used. Severity of late effects was assessed on a 4-point scale in accordance with Common Terminology Criteria for Adverse Events v3.0. While severity of late effects correlated positively only with parental warmth in younger age bracket, there were many relationships between severity of late effects and quality of life in older age bracket. The difference between the two age brackets is explained by the fact that adolescents are able to assess the impact of the disease.
Late effects in adult survivors of childhood cancer: the need for life-long follow-up
Annals of Oncology, 2007
Background: To assess health status and health-related quality of life (HRQoL) in childhood cancer survivors who were not involved in regular long-term follow-up. Patients and methods: One hundred and twenty-three long-term survivors, median age 33 (19-50) years, followup 27 (9-38) years, were recalled to the long-term follow-up clinic. Most of them were treated in the period 1970-1990. Late effects were graded using the Common Terminology Criteria for Adverse Events, version 3 (CTCAEv3). HRQoL was assessed by RAND-36. Socioeconomic factors were compared with data from Statistics Netherlands (CBS). Results: Grade 1-2 late effects were found in 54% of the survivors, grade 3-4 in 39%, two or more late effects in 70% and grade 2-4 previously unknown late effects in 33%. Survivors had significantly lower scores on RAND-36 compared with controls. Conclusions: As nearly 40% of these long-term childhood cancer survivors suffer from moderate to severe late effects and 33% had previously unknown late effects it is worthwhile recalling these patients to follow-up. Where and by whom this follow-up can best be done is still a question that needs to be answered.
Cancer Epidemiology Biomarkers & Prevention, 2008
Purpose: Psychological outcomes, health-related quality of life (HRQOL), and life satisfaction are compared between 7,147 adult childhood cancer survivors and 388 siblings from the Childhood Cancer Survivor Study, examining demographic and diagnosis/treatment outcome predictors. Methods: Psychological distress, HRQOL, and life satisfaction were measured by the Brief Symptom Inventory-18, the Medical Outcomes Survey Short Form-36, and Cantril Ladder of Life, respectively. A self-report questionnaire provided demographic/health information and medical record abstraction provided cancer/treatment data. Siblings' and survivors' scores were compared using generalized linear mixed models, and predictor effects of demographic and cancer/treatment variables were analyzed by multivariate logistic regression. Results: Although survivors report greater symptoms of global distress (mean, 49.17; SE, 0.12) than do siblings (mean, 46.64; SE, 0.51), scores remain below population norms, indicating that survivors and siblings remain psychologically healthy. Survivors scored worse than siblings on overall physical (51.30 F 0.10 versus 54.98 F 0.44; P < 0.001) but not emotional aspects of HRQOL, but effect sizes were small, other than in vitality. Most survivors reported present (mean, 7.3; SD, 0.02) and predicted future (mean, 8.6; SD, 0.02) life satisfaction. Risk factors for psychological distress and poor HRQOL were female gender, lower educational attainment, unmarried status, annual household income <$20,000, unemployment, lack of medical insurance, having a major medical condition, and treatment with cranial radiation. Conclusion: Compared with population norms, childhood cancer survivors and siblings report positive psychological health, good HRQOL, and life satisfaction. The findings identify targeted subgroups of survivors for intervention. (Cancer Epidemiol Biomarkers Prev 2008;17(2):435 -46) Cancer Epidemiol Biomarkers Prev
Health-related quality of life in young survivors of childhood cancer
Quality of Life Research, 2015
Purpose Childhood cancer and its treatment may affect health-related quality of life (HRQoL) in childhood cancer survivors, but population-based studies in young survivors are scarce. We aimed to: (1) compare HRQoL between young survivors and population norms and (2) find factors that influence parent-reported HRQoL in survivors. Methods As part of the Swiss Childhood Cancer Survivor Study, a questionnaire was mailed to parents of survivors aged 8-16 years, registered in the Swiss Childhood Cancer Registry, C5 years after diagnosis. We used the KIDSCREEN-27 instrument to compare self-and parent-reported HRQoL between survivors (N = 425) and standardized norms in the five dimensions of physical well-being, psychological well-being, autonomy, peers and school environment (mean = 50, SD = 10). We then used multivariable linear regressions to test the influence of socio-demographic and cancer-related factors on HRQoL. Results Self-reported physical well-being was comparable to norms. Other HRQoL dimensions were higher than norms, with the highest mean = 52.2 (p \ 0.001) for school environment. Parent-reported HRQoL in survivors was comparable to population norms; only physical well-being was lower (mean = 47.1, p \ 0.001), and school environment was higher (mean = 51.1, p = 0.035). Parent-reported HRQoL was lower for survivors of CNS tumors (physical well-being: b =-5.27, p = 0.007; psychological well-being: b =-4.39, p = 0.044; peers b =-5.17, p = 0.028), survivors of neuroblastoma (psychological well-being b =-5.20, p = 0.047), and survivors who had had a relapse (physical well-being b =-5.41, p = 0.005). Conclusions Assessing HRQoL during follow-up care, with a focus on physical well-being, specific diagnoses (e.g., CNS tumor) and late complications (e.g., relapse) might help to early identify problems and offer support to survivors with reduced HRQoL.
Living with the Late Effects of Childhood Cancer Treatment: A Descriptive Qualitative Study
International Journal of Environmental Research and Public Health, 2021
Long-term childhood cancer survivors (CCS) may experience physical, social, and emotional struggles posttreatment. Our aim was to explore the experiences of CCS dealing with the late effects of cancer treatment from their own perspectives. This study employed a qualitative descriptive design to explore and describe the experience of dealing with late effects among CCS. Semi-structured interviews were conducted with 15 CCS in Korea. Participants were selected by purposive and snowball sampling and individually interviewed during the period from September to November 2020. Conventional content analysis was used to analyze data and identify themes. Two main themes and seven subthemes emerged. The two main themes were: “Things I encountered while crossing a bridge” and “Living as a survivor”. The participants reported both positive and negative experiences with dealing with the late effects of cancer treatment. The main themes indicated that late effects exert significant impacts on the...
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2001
Given the increasing interest in quality of life research in cancer survivorship, psychometric properties of the Quality of Life-Cancer Survivors (QOL-CS) were explored in a group of childhood cancer survivors. The QOL-CS is a 41-item visual analog scale composed of four multi-item sub-scales (physical well-being, psychological well-being, social well-being, spiritual well-being) and two sub-components (fears, distress). This instrument was incorporated in a mailed survey completed by 177 respondents. The underlying factor structure and internal reliability of the instrument were explored. A preliminary assessment of the external validity of the factor structure was undertaken. Results of a factor analysis were theoretically consistent with elements assessed in the QOL-CS, although misclassification of several items was noted and discussed. Internal-consistency reliability was very good (Cronbach's alpha = 0.80-0.89) for five of the six factors. Moderate (0.30 < r < 0.45) ...
Health-related Quality of Life in Pediatric Cancer Survivors
Journal of Pediatric Hematology/Oncology, 2012
Aim: We aimed to evaluate the health-related quality of life (HRQOL) and the effect of associated factors such as cancer type, treatment strategies, sex, age, and parental factors like education and psychopathology in pediatric cancer survivors and make a comparison with healthy children.
2014
Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21-44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.
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Quality of Life Research, 2012
Background Little attention has been paid to selecting and developing health-related quality of life (HRQOL) measurement tools for young adult survivors of childhood cancer (YASCC). The primary purpose of this study was to develop a HRQOL tool for YASCC based on three legacy instruments. Methods Data collected from 151 YASCC were analyzed. HRQOL was measured using the Medical Outcomes Study SF-36, Quality of Life in Adult Cancer Survivors, and Quality of Life-Cancer Survivor. We used the following stages to develop our HRQOL tool: mapping items from three instruments into a common HRQOL construct, checking dimensionality using confirmatory factor analyses (CFA), and equating items using Rasch modeling. Results We assigned 123 items to a HRQOL construct comprised of six generic and eight survivor-specific domains. CFA retained 107 items that meet the assumptions of unidimensionality and local independence. Rasch analysis retained 68 items that satisfied the indices of information-weighted/outlier-sensitive fit statistic mean square. However, items in most domains possess relatively easy measurement properties, whereas YASCC's underlying HRQOL was on the middle to higher levels. Conclusions Psychometric properties of the established tool for measuring HRQOL of YASCC were not satisfied. Future studies need to refine this tool, especially adding more challenging items.
PLoS ONE, 2014
Background: Quality of life (QoL), being the sum expression of diverse influencing factors, is not easy to determine. A clinically relevant option would be to identify and measure quality of life on the basis of physiological parameters which correlate plausibly and statistically with psychometrically measured QoL. Analysis of heart rate variability (HRV) offers readily measurable physiological parameters which could be of use here. A correlation of HRV with both course of disease and QoL has been reported in patients with chronic illness. Various psychometric instruments have been developed for use in paediatric oncology. The aim of this study was to obtain data on HRV and QoL and their correlations, initially in healthy children.
Are there any positive consequences of childhood cancer? A review of the literature
Acta Oncologica, 2008
The aim was to investigate whether there are any positive consequences of childhood cancer. Studies published 1990Studies published Á 2005 reporting survivors' descriptions of positive consequences of childhood cancer were identified through a search in the databases CINAHL, PsycINFO, and PubMed. According to a manifest content analysis, positive consequences were referred to three themes: life values, relations to others, and relation to self. A second search in the same databases was conducted to identify studies investigating whether survivors of childhood cancer differ from comparison groups with regard to variables assigned to these themes. In these studies, no conclusions about positive consequences with regard to the theme life values can be drawn, as only one study was identified. In addition, only a small minority of findings from comparative studies indicate that childhood cancer has any positive consequences with regard to relations to others and relation to self. A majority of the results indicate that survivors do not differ from comparison groups, whereas some findings highlight that friendship and marital status are areas of concern, and parenthood and sexuality are areas of potential concern. It is recommended that survivors of childhood cancer are followed up by a multi-professional team, focusing not only on the survivors' health status but also on relations to family, friends, and partners.
International Journal of Cancer, 2007
The purpose of this study was to investigate the effect of childhood cancer and its treatment on self-reported health-status in 10,189 adult survivors of childhood cancer in Britain. Age-and sexadjusted scores on the SF-36 Mental and Physical Component Summary scales (MCS, PCS, respectively) were compared between survivors and UK norms, and between subgroups of survivors, by multiple regression. Survivors had comparable scores to UK-norms on the MCS scale (difference (D) 5 20.1, 99% CI: 20.5, 0.3). The difference in scores between survivors and UKnorms on the PCS scale varied by age (p heterogeneity < 0.001). Young survivors (16-19 years) scored similarly to UK-norms (D 5 0.5, (21.1, 2.2), whereas the age groups of 25 and older scored statistically and clinically significantly below UK-norms (all p-values < 0.0001), with Ds ranging between 22.3 (23.5, 21.2) and 23.7 (25.0, 22.4). Survivors of central nervous system (CNS) and bone tumors scored significantly (p-value at all ages <0.003) below UK-norms on the PCS scale. Specifically, these survivors were substantially more limited in specific daily activities such as, for example, walking a mile (40, 63%, respectively) when compared to UK-norms (16%). In conclusion, childhood cancer survivors rate their mental health broadly similarly to those in the general population. Survivors of CNS and bone tumors report their physical health-status to be importantly below population norms. Although self-reported physical health is at least as good as in the general population among young survivors, this study suggests that perceived physical health declines more rapidly over time than in the general population. ' 2007 Wiley-Liss, Inc.
Health and quality of life outcomes, 2006
The SF-36 has been used in a number of previous studies that have investigated the health status of childhood cancer survivors, but it never has been evaluated regarding data quality, scaling assumptions, and reliability in this population. As health status among childhood cancer survivors is being increasingly investigated, it is important that the measurement instruments are reliable, validated and appropriate for use in this population. The aim of this paper was to determine whether the SF-36 questionnaire is a valid and reliable instrument in assessing self-perceived health status of adult survivors of childhood cancer. We examined the SF-36 to see how it performed with respect to (1) data completeness, (2) distribution of the scale scores, (3) item-internal consistency, (4) item-discriminant validity, (5) internal consistency, and (6) scaling assumptions. For this investigation we used SF-36 data from a population-based study of 10,189 adult survivors of childhood cancer. Overa...
Aspects of mental health dysfunction among survivors of childhood cancer
British journal of cancer, 2015
Some previous studies have reported that survivors of childhood cancer are at an increased risk of developing long-term mental health morbidity, whilst others have reported that this is not the case. Therefore, we analysed 5-year survivors of childhood cancer using the British Childhood Cancer Survivor Study (BCCSS) to determine the risks of aspects of long-term mental health dysfunction. Within the BCCSS, 10 488 survivors completed a questionnaire that ascertained mental health-related information via 10 questions from the Short Form-36 survey. Internal analyses were conducted using multivariable logistic regression to determine risk factors for mental health dysfunction. External analyses were undertaken using direct standardisation to compare mental health dysfunction in survivors with UK norms. This study has shown that overall, childhood cancer survivors had a significantly higher prevalence of mental health dysfunction for 6/10 questions analysed compared to UK norms. Central ...
Frontiers in psychology, 2017
Background: Patients who undergo pediatric Hematopoietic Stem Cell Transplantation (HSCT) may experience long-term psychological sequelae and poor Quality of Life (QoL) in adulthood. This study aimed to investigate subjective illness experience, QoL, and psychopathology in young adults who have survived pediatric HSCT. Method: The study involved patients treated with HSCT in the Hematology-Oncology Department between 1984 and 2007. Psychopathology and QoL were investigated using the SCL-90-R and SF-36. Socio-demographic and medical information was also collected. Finally, participants were asked to write a brief composition about their experiences of illness and care. Qualitative analysis of the texts was performed using T-LAB, an instrument for text analysis that allows the user to highlight the occurrences and co-occurrences of lemma. Quantitative analyses were performed using non-parametric tests (Spearman correlations, Kruskal-Wallis and Mann-Whitney tests). Results: Twenty-one ...
Pediatric Blood & Cancer, 2018
Background: Recent research has suggested that long-term pediatric cancer survivors were at risk of important physical and psychological morbidities. To date, we do not know to what extent functional health status contributes to psychological risk and which domains are most important. The aim of this study was to systematically explore which functional domain could explain anxiety, depression, and distress symptoms. Procedure: We used data available for 105 adolescents and 182 adults successfully treated for childhood acute lymphoblastic leukemia at two Canadian sites part of the PETALE cohort. Participants were ≥5 years postdiagnosis, aged 22 ± 6 years, 52% female, and 49% acute lymphoblastic leukemia high-risk status. The contribution of health functional status (15D/16D questionnaires) to self-reported anxiety, depression, and distress (Beck scales and distress thermometer) was evaluated using adjusted logistic regression models. Results: Prevalence rates found for mild-severe anxiety, depression, and distress were 14%, 21%, and 30% among adolescents and 27%, 20%, and 19% among adults. Frequent health domains associated with psychological risk were sleeping and breathing in adolescents, and vitality/fatigue, discomfort/symptoms, mental function, and sleeping in adults. Mental function was systematically associated with psychological risk across age groups (median OR = 10.00, 95% CI 3.01-33.71). Exploratory mediation bootstrapping analyses suggested that the effect on psychological risk of overall health status and mental function problems was partly explained by social/work/school functioning. Conclusion: The results identified important functional health domains that could be targeted for interventions preventing psychological risk: vitality/fatigue, discomfort/symptoms, sleeping, and mental function issues. Health domains probably affect mood partly by limiting social/work/school functioning. K E Y W O R D S childhood cancer, health status, late effects, psychological risk, survivorship 1 INTRODUCTION Significant treatment improvements in childhood acute lymphoblastic leukemia (cALL) have led to a 5-year survival rate reaching 91% in Canada. 1 Several studies have highlighted how radiation therapy exposure, chemotherapy toxicity, as well as sex and age at diagnosis may be contributing factors to late adverse effects (LAEs) for survivors. LAEs include metabolic dysfunctions, musculoskeletal morbidities, cardiopulmonary, and neurocognitive impairments. 2-14 A report on the Childhood Cancer Survivor Study (CCSS) has estimated that 62% of surveyed adult survivors had at least one chronic health condition and 28% suffered from a severe condition. 5 Furthermore, the St-Jude Lifetime Cohort study found that the cumulative burden of chronic health conditions among adult childhood cancer survivors (CCS) compared
Cancer, 2016
The current study was performed to examine associations between childhood cancer therapies, chronic health conditions, and symptoms of emotional distress in adult survivors of childhood cancer. Participants included 5021 adult survivors of childhood cancer (mean age, 32.0 years [standard deviation, 7.6 years] with a time since diagnosis of 23.2 years [standard deviation, 4.5 years]) who completed measures assessing symptoms of anxiety, depression, and posttraumatic stress. Cardiac, pulmonary, and endocrine conditions were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events (version 4.03; grades 1-4). Structural equation modeling was used to examine hypothesized pathways between cancer treatment exposures, chronic health conditions, and symptoms of emotional distress. Multivariable models were used to estimate relative risks (RRs) for associations between chronic health conditions and distress. Survivors with cardiovascular, endocrine, or pulmona...
Life satisfaction in adult survivors of childhood brain tumors
Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses
Adult survivors of childhood brain tumors experience multiple, significant, lifelong deficits as a consequence of their malignancy and therapy. Current survivorship literature documents the substantial impact such impairments have on survivors' physical health and quality of life. Psychosocial reports detail educational, cognitive, and emotional limitations characterizing survivors as especially fragile, often incompetent, and unreliable in evaluating their circumstances. Anecdotal data suggest some survivors report life experiences similar to those of healthy controls. The aim of our investigation was to determine whether life satisfaction in adult survivors of childhood brain tumors differs from that of healthy controls and to identify potential predictors of life satisfaction in survivors. This cross-sectional study compared 78 brain tumor survivors with population-based matched controls. Chi-square tests, t tests, and linear regression models were used to investigate pattern...
Ciência & Saúde Coletiva
Survivors of childhood cancer constitute a growing population. The disease experienced, its treatment or the occurrence of late complications may affect survivors’ health-related quality of life (HRQOL). Understanding HRQOL is a challenge due to its conceptual complexity and the mode in which it is studied. Objective: To identify the predominant lines of research in the study of HRQOL in this population. Methods: An integrative literature review was carried out, involving a systematic search of primary articles indexed in the Scopus and PubMed databases. Results: In the 48 publications selected, four main lines of research were identified: HRQOL in survivors in general; HRQOL in long-term survivors; the study of determinants of HRQOL; and the study of methodological aspects of HRQOL measurement. A quantitative approach using generic measurement instruments predominates, and the conceptual model of HRQOL based on function emphasizes the importance of physical, psychological, and soci...
Ciência & Saúde Coletiva
Resumen Los sobrevivientes de cáncer pediátrico constituyen una población creciente. La enfermedad padecida, su tratamiento o la ocurrencia de complicaciones tardías pueden afectar su calidad de vida relacionada a la salud (CVRS). Comprender la CVRS, es un desafío por su complejidad conceptual y la modalidad de su estudio. Objetivo: identificar las líneas de investigación predominantes en el estudio de CVRS en esta población. Métodos: revisión bibliográfica integrativa. Búsqueda sistematizada de artículos primarios indizados. Bases Scopus y PubMed. Resultados: 48 publicaciones seleccionadas, se identificaron cuatro líneas principales de investigación: CVRS en sobrevivientes en general; en sobrevivientes de largo plazo; estudio de determinantes de la CVRS; y estudio de aspectos metodológicos sobre medición de CVRS. Predomina el abordaje cuantitativo con instrumentos genéricos de medición, y el modelo conceptual de CVRS basado en la función, enfatiza la importancia de la funcionalidad...
Health-related quality of life in young survivors of childhood cancer
Quality of Life Research, 2015
Purpose Childhood cancer and its treatment may affect health-related quality of life (HRQoL) in childhood cancer survivors, but population-based studies in young survivors are scarce. We aimed to: (1) compare HRQoL between young survivors and population norms and (2) find factors that influence parent-reported HRQoL in survivors. Methods As part of the Swiss Childhood Cancer Survivor Study, a questionnaire was mailed to parents of survivors aged 8-16 years, registered in the Swiss Childhood Cancer Registry, C5 years after diagnosis. We used the KIDSCREEN-27 instrument to compare self-and parent-reported HRQoL between survivors (N = 425) and standardized norms in the five dimensions of physical well-being, psychological well-being, autonomy, peers and school environment (mean = 50, SD = 10). We then used multivariable linear regressions to test the influence of socio-demographic and cancer-related factors on HRQoL. Results Self-reported physical well-being was comparable to norms. Other HRQoL dimensions were higher than norms, with the highest mean = 52.2 (p \ 0.001) for school environment. Parent-reported HRQoL in survivors was comparable to population norms; only physical well-being was lower (mean = 47.1, p \ 0.001), and school environment was higher (mean = 51.1, p = 0.035). Parent-reported HRQoL was lower for survivors of CNS tumors (physical well-being: b =-5.27, p = 0.007; psychological well-being: b =-4.39, p = 0.044; peers b =-5.17, p = 0.028), survivors of neuroblastoma (psychological well-being b =-5.20, p = 0.047), and survivors who had had a relapse (physical well-being b =-5.41, p = 0.005). Conclusions Assessing HRQoL during follow-up care, with a focus on physical well-being, specific diagnoses (e.g., CNS tumor) and late complications (e.g., relapse) might help to early identify problems and offer support to survivors with reduced HRQoL.
Health and Quality of Life Outcomes, 2014
Background: There are very few reliable and valid measures in Japan assessing health-related quality of life (HRQOL) in children with cancer. The present study aimed to develop a Japanese version of the Minneapolis-Manchester Quality of Life Survey of Health Adolescent Form (MMQL-AF), which is a measure for assessing the HRQOL of childhood cancer survivors, and investigate its reliability and validity. Methods: Participants were 141 children with cancer who had been off therapy for more than one year and 183 healthy controls. The reliability and internal consistency of the measure were assessed through test-retest methods using Cronbach's coefficient alpha and intra-class correlation coefficients (ICCs). For validation of the measure, factorial validity, concurrent validity using the Japanese version of PedsQL 4.0 Generic Core Scales (PedsQL-J), and discriminant validity using comparisons between children with cancer and healthy controls were investigated. Results: Of the 46 items in the original version, 44 items were determined to comprise the Japanese version of the MMQL-AF. Cronbach's coefficient alphas for each subscale were high ranging from 0.83 to 0.89. Test-retest reliability ranged between ICC 0.79 to 0.96. Investigation of concurrent validity using the PedsQL-J demonstrated strong correlations in physical functions and moderate correlations for other factors. A significant difference was observed between children with cancer and healthy controls. Conclusions: Thus, the Japanese version of the MMQL-AF served as a self-evaluation questionnaire that allowed for practical, comprehensive, and multidimensional measurement of HRQOL specific to childhood cancer survivors.
Related papers
Pediatric Blood & Cancer, 2010
Due to advances in medicine there has been a considerable improvement in childhood cancer survival rates. Today three out of four children who have been diagnosed with cancer are cured [1]. In the growing population of long-term survivors of childhood cancer treatment related health problems have been widely acknowledged [2-5]. Furthermore, the literature reveals negative impacts on close relationships and life goals such as education and work as well as worries about illness recurrence and uncertainty about the future [6,7]. However, other studies of survivors report the same or better quality of life [8,9] and psychological functioning [6,10] as that found in comparison groups. Nevertheless, the importance of following up healthcare needs after childhood cancer is highlighted owing to physical problems that may have negative consequences for the individual [11]. Healthcare providers' inability to meet such needs was reported in a Swedish study, where 30% of the long-term survivors of childhood cancer were dissatisfied with the follow-up visits they had been offered [12]. There is as yet no commonly accepted definition of what constitutes quality of life nor is there a 'gold standard' measure. Assessing quality of life generally includes the individual's appraisal of different dimensions, such as physical, emotional and social functioning [13]. Measures of quality of life are often health related and standardized and are designed to assess the impact of illness and treatment on a person's life [14]. An alternative approach to assessing quality of life is to use an individualized measure that enables identification and evaluation of aspects considered important in life [15]. Thus, using such an approach it may be possible to detect the individual's perspective on factors that influences quality of life factors not necessarily detected with standardized measures. It is clear that many survivors of childhood cancer experience ongoing physical health problems. However, there is less knowledge about how young adult survivors perceive their current lives and about what influence health status has on their quality of life. Accordingly, the present objective was to describe quality of life in relation to self-reported health status and socio-demographic characteristics among long-term survivors of childhood cancer as compared to that among a sample from the general population.
Late effects and quality of life of childhood cancer survivors: Part 2. Impact of radiotherapy
International Journal of Hematology, 2010
To examine the late effects and health-related quality of life among childhood cancer survivors (CCS) after stem cell transplantation (SCT), we performed a cross-sectional survey using self-rating questionnaires. The subjects were divided into 3 groups: SCT-treated CCS, CCS treated without SCT, and the general population who matched for age, gender, residential area, and work status with the CCS. We analyzed the questionnaires of 185 CCS and 1,000 control participants. The median ages of CCS at diagnosis and survey were 8 and 22 years, respectively. The mean final heights of male and female participants were significantly lower for SCT-treated CCS than for CCS treated without SCT and the controls. Among the SCT-treated CCS, [40% were underweight (BMI \ 18.5). Late effects were observed in 78% of SCT-treated CCS versus 45% of CCS treated without SCT. Multivariate analysis revealed that [15 years' duration after therapy completion (OR 2.95; p = 0.014), solid tumors (4.31; p = 0.040), radiotherapy (2.82; p = 0.009), recurrence (4.22; p = 0.017), and SCT (3.39; p = 0.014) were significant risk factors for late effects. Subjective symptoms were significantly frequent in SCT-treated CCS. Physical dysfunction, psychological stress, and social adaptation problems were observed in [70% of SCT-treated CCS.
Quality of Life in Adult Survivors of Childhood Cancer
Social Work in Health Care, 1999
Sixty-four adult survivors of childhood cancer, recruited via Israel's largest pediatric cancer treatment center, participated in a multi-dimensional assessment of long-term adjustment and quality of life in the domains of educational achievement, employment status, military service, family status, health, and psychological well-being. Subjects had been diagnosed with cancer prior to age 18, were three years or more off therapy with no evidence of disease, and over 18 years old at the time of the study. Data from structured interviews were compared to responses on similar items from a control group with no history of serious illness during childhood, matched for age, sex, and parental education levels. Results indicated an overall pattern of integration into the social mainstream, with similar objective levels of achievement for survivors and controls for most measures of education, employment, significant relationships, and psychological well-being. Results also indicated certain areas of disadvantage, such as military recruitment difficulties, lower income levels, and higher rates of workplace rejection. Significantly, almost half of the survivor sample reported subjective feelings that their illness experience had impaired their achievement in several domains. Quality of life is considered an important outcome parameter in terms of clinical decision making as well as in guiding preventive and supportive
Journal of Clinical Oncology, 2009
Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk ...
BMC Cancer
Background Comprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer. Methods HRQOL of 2154 children with cancer was longitudinally reported (median: 3 reports) between diagnosis and 5 years after, using the pediatric quality of life inventory generic core scales (PedsQL). HRQOL was modelled over time since diagnosis using mixed model analysis for children 2–7 years (caregiver-reports) and ≥ 8 years (self-reports). Differences in the course between hematological, solid and central nervous system malignancies were studied. Additional associations of demographics, disease characteristics (age at diagnosis, relapse, diagnosis after the national centralization of childhood cancer care and treatment components) and caregiver distress (Distress thermometer) were...
PEDIATRICS, 2005
Objective. To assess the health-related quality of life (HRQL) of 8-to 12-year-old children undergoing therapy for cancer or childhood-cancer survivors by using the Minneapolis-Manchester Quality of Life-Youth Form (MMQL-YF), a comprehensive, multidimensional self-report instrument with demonstrable reliability and validity. Design, Setting, and Patients. The MMQL-YF consists of 32 items comprising 4 scales: physical functioning, psychologic functioning, physical symptoms, and outlook on life. Scoring on the MMQL ranges from 1 to 5; 5 indicates maximal HRQL. An overall quality-of-life (QOL) score is also computed. By using a cross-sectional study design, the MMQL-YF was administered to 90 offtherapy cancer survivors, 72 children with cancer undergoing active therapy, and 481 healthy children without a history of cancer or other chronic disease. Results. Compared with healthy controls, children actively undergoing cancer treatment report low overall QOL, physical functioning, and outlook-on-life scores. However, off-therapy survivors report a superior overall QOL, compared with age-matched healthy controls. Conclusions. Young survivors of childhood cancer report a favorable HRQL relative to healthy controls. These results are reassuring, suggesting that this group of survivors may have been too young to encounter some of the negative psychosocial impacts of cancer and its treatment. Pediatrics 2005;115:435-442; health-related quality of life, childhood-cancer survivors.
Long‐term health‐related quality of life in young childhood cancer survivors and their parents
Pediatric Blood & Cancer, 2021
Purpose: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child"s HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child"s cancer-related late-effects. Results: 182 parents of survivors (mean age=12.4 years old and 9.7 years post-diagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 v 50.7, p<.009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents" average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p<.0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors" late effects and improving parents" resilience through survivorship may improve HRQoL in long-term survivorship. This is the author manuscript accepted for publication and has undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record. Please cite this article as doi: 10.1002/pbc.29398..
Quality of Life Research, 2021
Purpose With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS’ needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors’ wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors’ unmet needs. Method In this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer. Results Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and ...
Quality of life in children and adolescents surviving cancer
European Journal of Oncology Nursing, 2012
Purpose: To explore subjective and proxy reported QoL (Quality of Life) in children and adolescents surviving cancer three years after diagnosis compared with healthy controls. Method: Case-control study including 50 children and adolescents diagnosed with cancer between January 1, 1993 and January 1, 2003 and treated at the Paediatric Department of St. Olav's University Hospital in Trondheim, Norway. Data were collected using The Inventory of Life Quality in Children and Adolescents (ILC) and the KINDL QoL questionnaires (parent and self-reports), as well as by collecting data for any somatic late effects and psychological problems from the medical records of children surviving cancer. Results: Adolescents surviving cancer as a group assessed their QoL as similar to that of their peers. However, adolescents surviving brain tumours or those with late effects reported lower QoL and an increased number of QoL domains perceived as problematic, even many years after diagnosis and treatment. Parents generally report a poorer QoL for their children surviving cancer and a greater number of QoL domains experienced as problematic compared with parent controls. Conclusion: To improve the child's total functioning and well-being we conclude that when planning long-term follow-up care, rehabilitation of children and adolescents with cancer, especially for survivors with brain tumours, and with late effects should particularly take into account their subjectively perceived and proxy reported QoL, in addition to their psychological problems and psychosocial functioning.
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