Biomedical subjects

B F Last

Publications and source records attributed to B F Last.

At least 19 recordsLinked to original sources

PubMed2006

Quality of life and current coping in young adult survivors of childhood cancer: positive expectations about the further course of the disease were correlated with better quality of life.

OBJECTIVES: As a result of advances in the treatment of childhood cancer many patients who may previously have had a limited life expectancy, are now surviving into adulthood. More insight is needed into the long-term adjustment of young adult survivors of childhood cancer. The purpose of this study was to (1) assess health-related quality of life (HRQoL), and (2) to explore the role of cognitive coping in relation to HRQoL. METHODS: HRQoL of 353 Dutch young adult survivors of childhood cancer was compared with HRQoL of 507 peers. Linear regression analyses predicted survivors' HRQoL by cognitive coping, independent of the impact of demographics and medical variables. RESULTS: Survivors reported a lower HRQoL than their peers. Health status was the best predictor of the Physical Component Scale of the RAND-36; health status and cognitive coping contributed almost equally well to the Mental Component Scale. The explanatory value of cognitive coping could mainly be attributed to the use of predictive control strategies. CONCLUSIONS: Because current coping seemed to be an important predictor of HRQoL, interventions directed at the coping strategies of survivors should be useful. The strong association between predictive coping and HRQoL stresses the importance of focusing at having positive expectations about the further course of the disease.

Adaptation, Psychological↗

PubMed2006

Children with cancer.

Some specific aspects of communication in pediatric oncology will be outlined in this chapter. These include openness about the disease, which has become increasingly important. Furthermore, the law of double protection, a self-protective strategy used by children, parents, and hospital staff, will be sketched out. It is very striking that protection is often achieved through protection of the other. Several examples of this strategy will be presented. Finally, attention will be paid to communication about death in the palliative phase.

Attitude to Death↗

PubMed2005

Intellectual and motor development of young adults with congenital hypothyroidism diagnosed by neonatal screening.

CONTEXT: Long-term follow-up data on cognitive and motor functioning in adult patients with congenital hypothyroidism, diagnosed by neonatal screening, are scarce. Hence, it is still unclear whether the frequently reported cognitive and motor deficits observed during childhood persist in adulthood. OBJECTIVE: The objective of this study was to examine cognitive and motor functioning in young adults with congenital hypothyroidism, born in the first 2 yr after the introduction of the Dutch neonatal screening program. DESIGN/SETTING/PATIENTS: Seventy patients were tested (mean age, 21.5 yr); 49 of them were previously tested at 9.5 yr. The median age at the start of treatment was 28 d (range, 4-293 d). Congenital hypothyroidism was classified as severe, moderate, or mild, according to pretreatment T(4) concentrations. MAIN OUTCOME MEASUREMENT: The main outcome measurement was the influence of the severity of congenital hypothyroidism and age at which T(4) supplementation was started on cognitive and motor outcome. RESULTS: Patients, particularly those with severe congenital hypothyroidism, had significantly higher (i.e. worse) motor scores (total score, 7.8; ball skills, 2.0; balance, 4.1) compared with controls (total score, 3.2; ball skills, 0.7; balance, 1.1), and lower full-scale (95.8), verbal (96.4), and performance (95.6) intelligence quotient (IQ) scores than the normal population. No significant change in IQ from childhood to adulthood was found, and for the majority of patients, motor score classification remained the same. The severity of congenital hypothyroidism, but not the starting day of treatment, was correlated with IQ and motor scores. CONCLUSIONS: It is concluded that the severity of congenital hypothyroidism, but not the timing of treatment initiation, is an important factor determining long-term cognitive and motor outcome. Clearly, detrimental effects on developmental outcome in patients with congenital hypothyroidism persist over time.

Adult↗

PubMed2005

The course of life of survivors of childhood cancer.

The developmental consequences in adulthood of growing up with childhood cancer are not well understood. The Course of life questionnaire was developed to assess the attainment of developmental milestones retrospectively and socio-demographic outcomes in young adulthood. The aim of this study was to assess the course of life and socio-demographic outcomes in young adult survivors of childhood cancer. Knowledge about possible gaps in the course of life could enable health care providers to aim for the most favourable course of life. A total of 353 Dutch survivors and a comparison group of 508 peers without a history of cancer, all aged between 18 and 30, filled in the Course of life questionnaire. The course of life of the survivors was found to be hampered. The young adult survivors of childhood cancer in the Netherlands turned out to have achieved fewer milestones than their peers with respect to autonomy development, social development, and psycho-sexual development, or to have achieved the milestones when they were older than their peers. In addition, survivors displayed less risk behaviour than the comparison group. The survivors and the comparison group also differed on some socio-demographic issues. A considerably lower percentage of survivors than peers in the comparison group were married or living together, and/or employed. Their educational level, on the other hand, was as high as that of their peers.

Adolescent↗

PubMed2005

One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer.

BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the illness. METHODS: Participants were 83 siblings from 56 families-46 girls and 37 boys, aged 7-18. The assessment took place 1 month to 8 weeks after the diagnosis of cancer in the ill child. The siblings' QoL was assessed with the TNO-AZL children's quality of life questionnaire (TACQOL). Coping strategies were assessed with the Cognitive Coping Strategies Scale for siblings (CCSS-s). Physical problems and eating and sleeping problems that existed before the ill child was diagnosed were determined in a structured interview with the parents. RESULTS: A substantial number of siblings reported impaired cognitive and emotional QoL compared to the reference group. School-aged siblings (7-11 years) reported more trouble with motor functioning than peers. The coping strategy 'predictive control' (maintaining positive expectations regarding the illness) positively predicted siblings' QoL. The presence of health problems before diagnosis was negatively associated with siblings' QoL. Older siblings reported more negative emotions, while girls reported lower social QoL and reliance on 'interpretative control' (trying to understand the illness) was associated with fewer positive emotions. CONCLUSIONS: During the first 2 months after the diagnosis of cancer in a brother or sister, siblings have relatively lower QoL than peers. Health problems that existed before diagnosis may be a predictor of later adjustment problems. Positive expectations about the course of the illness appear to protect siblings from distress. Information about the illness is a delicate issue that requires parental guidance.

Adaptation, Psychological↗

PubMed2004

Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis.

UNLABELLED: Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied in research on the effects of chronic illness on the affected patient, but has not yet been studied in siblings. AIMS: To investigate the prevalence of self-reported psychosocial problems in siblings of pediatric cancer patients, 2 years after the onset of the illness. MEASUREMENTS: Two Dutch quality of life questionnaires, the TACQOL and the DUCATQOL are used, as well as generic non-health-related measures of emotional and behaviour problems (CBCL-YSR) and anxiety (STAI-C). PARTICIPANTS: Participants were 103 siblings aged 7-18 years old. Fifty seven Siblings participated in a prospective and 46 in a retrospective study group. RESULTS: Siblings aged 7-11 report lower overall quality of life than children in the norm group. No differences in mean scores were found on any of the other domains that were investigated. When the prevalence of problems was investigated, however, relatively more siblings compared to normative data had scores in the impaired group based on the 20th percentile norm. A relatively high number of siblings aged 7-11 reported impaired emotional (42%), social (34%) and total quality of life (47%) (DUCATQOL) and physical problems (26%) (TACQOL). Relatively many adolescent siblings (26%) reported significant internalising problems on the CBCL-YSR. CONCLUSIONS: Although acute emotional distress reactions seem to have normalised in most siblings as has been suggested in the literature, emotional distress of having a brother or sister with cancer may continue beyond diagnosis for a subgroup of children. Young siblings seem to be affected in their quality of life, whereas a subgroup of adolescent siblings experience clinically relevant internalising problems. The results support the use of quality of life measures for siblings. Predictors of long-term adaptation in siblings need to be investigated.

Adaptation, Psychological↗

PubMed2004

Coping strategies and quality of life of adolescents with inflammatory bowel disease.

OBJECTIVE: This study aims to compare generic coping styles adopted by adolescents suffering from inflammatory bowel disease (IBD) to styles used by their healthy peers, and to assess the association between coping styles and health-related quality of life (HRQoL). METHODS: A generic coping style instrument, a disease-related coping style instrument and a disease-specific HRQoL instrument were administered to 65 adolescents (12-18 years old) with IBD. Normative data from the generic instrument were available. Mean domain scores of IBD patients were compared to normative scores. Multivariate linear regression analyses were performed on models with HRQoL domains as dependent, and preselected demographic and disease-related characteristics and coping styles as independent variables. RESULTS: Adolescents with IBD use more avoidant coping styles than their healthy peers. HRQoL is associated with disease-related coping styles and with disease activity. More use of a predictive coping style (having positive expectations about the disease) and less use of a depressive reaction pattern are associated with better HRQoL in three out of six HRQoL domains. CONCLUSION: This study suggests an association between coping styles and HRQoL.

Adaptation, Psychological↗

PubMed2003

Psychosocial functioning in siblings of paediatric cancer patients one to six months after diagnosis.

The aim of this study was to prospectively investigate the prevalence of and risk factors for psychosocial problems in siblings of paediatric cancer patients. One and 6 months after diagnosis, sibling self-reported anxiety, social-emotional problems and quality of life (QoL) were assessed, as were the predictor variables: sibling prediagnosis functioning, age and gender and the ill child's diagnosis. At 1 month, siblings reported a lower QoL and adolescent girls reported more emotional problems compared with peers. At 6 months, adolescent QoL remained relatively impaired. Over time, adolescent brothers reported fewer emotional and total problems and young girls reported decreased anxiety. No significant amelioration in QoL was found over time. The older the siblings were, the lower their observed QoL at both measurements and in several domains. The occurrence of life events predicted sisters' QoL at 1 month. Changes in sibling functioning were predicted by none of the investigated risk factors. Thus, QoL is impaired shortly after diagnosis. Adolescent siblings risk persisting problems in daily functioning. Further prospective research on other risk factors such as coping and family functioning over time is needed.

Adolescent↗

PubMed2003

Quality of life, anxiety and concerns among statin-treated children with familial hypercholesterolaemia and their parents.

AIM: To assess the quality of life, anxiety and concerns among statin-treated children with familial hypercholesterolaemia (FH) and their parents. METHODS: 69 FH children on statin therapy and 87 parents (51 families) participated in this study. Quality of life of the children, and anxiety levels of both the children and their parents, were investigated using self-report questionnaires. In addition, a questionnaire was designed to evaluate FH-specific concerns of these children and their parents on six different topics: 1, knowledge about FH; 2, experience of the disease; 3, family communication; 4, screening; 5, diet; and 6, experience of medication therapy. RESULTS: FH children and their parents reported no problems with regard to quality of life and anxiety. In contrast, the FH survey showed specific FH-related concerns. One-third of the children thought that FH can be cured, and 44% of the children suffered from the fact they have FH, but taking medication makes them feel safer (62%). The majority of the children kept a low cholesterol diet and more than 50% took care not to eat too much fat. Almost 38% of the parents experienced FH as a burden to their family and 79% suffered because their child had FH. CONCLUSION: These findings show that statin-treated children with FH and their parents did not report affected psychosocial functioning, but did show specific FH-related concerns.

Adolescent↗

PubMed2002

Quality of life in young adult survivors of childhood cancer.

In recent years the necessity of measuring quality of life in childhood cancer survivors has been stressed. This paper gives an overview of the results of studies into the quality of life (QL) of young adult survivors of childhood cancer and suggest areas for future research. The review located 30 empirical studies published up to 2001. The results are described in terms of the following QL dimensions: physical functioning (QL, general health), psychological functioning (overall emotional functioning, depression and anxiety, self-esteem), social functioning (education, employment, insurance, living situation, marital status and family), and sexual functioning. Factors related to survivors' QL are reported: demographics and illness- and treatment related variables. Although the literature yields some inconsistent findings, a number of clear trends can be identified: (a) most survivors reported being in good health, with the exception of some bone tumour survivors; (b) most survivors function well psychologically; (c) survivors of CNS tumours and survivors of acute lymphoblastic leukaemia (ALL) are at risk for educational deficits; (d) job discrimination, difficulties in obtaining work and problems in obtaining health and life insurance were reported; (e) survivors have lower rates of marriage and parenthood; (f) survivors worry about their reproductive capacity and/or about future health problems their children might experience as a result of their cancer history. There is a need for methodological studies that measure QL among survivors of childhood cancer more precisely by taking into account the effects of the severity of the cancer and the long-term impact of different treatments. Additional data are needed to help us understand the needs of survivors and to identify those subgroups of survivors who are at greatest risk for the adverse sequelae of the disease and its treatment.

Adaptation, Psychological↗

PubMed2002

Measuring quality of life in children with inflammatory bowel disease: the impact-II (NL).

Inflammatory bowel disease (IBD) is a chronic debilitating disorder. Measures of quality of life are only available for adult patient populations. We developed a new disease-specific health-related quality of life instrument in Dutch for pediatric patients with IBD, called Impact-II (NL). We translated and strongly modified the original (Canadian) Impact questionnaire. It comprises 35 items in six domains. Eighty-three children (66%) completed the questionnaire, 39 children were assessed twice. Disease symptoms were recorded and disease course severity assessed through chart review. Summated disease activity scores and disease course severity scores were dichotomized into two categories. Reliability coefficients were good for five out of six domains (Cronbach's alpha ranged from 0.57 to 0.86) and measures of test-retest stability in clinically stable patients were good for all domains (intra-class correlation coefficients ranged from 0.67 to 0.91). The instrument showed good discriminant validity between symptom groups and disease course severity on all domains. Convergent validity with a validated generic instrument [TNO-AZL Children's Quality of life questionnaire (Tacqol)] showed satisfactory coefficients. In conclusion, the developed questionnaire shows good psychometric properties. Test-retest stability and responsiveness to change should be further assessed in larger patient samples. Cross-cultural translation and validation procedures into other languages are being conducted to enable international use of Impact-II.

Adolescent↗

PubMed2002

Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire.

UNLABELLED: This study assessed the impact of inflammatory bowel disease (IBD) on the health-related quality of life (HRQoL) of children and adolescents, using both a generic and a disease-specific instrument. Three questionnaires were sent to all patients (8-18 y old) from the database of two large secondary/tertiary hospitals in the western part of The Netherlands. In total, 83 (66%) children responded, 18 were between 8 and 12 y old and the remaining 65 were older. HRQoL was measured using a generic instrument, the TNO-AZL Children's Quality of Life questionnaire (TACQOL), assessing seven domains, and the Impact-II (NL), a disease-specific instrument assessing six domains. Disease activity was measured by a five-item symptom card. Compared with scores from a large reference population (n= 1810), younger children with IBD had a comparable HRQoL (measured by the TACQOL) on six domains, and better cognitive functioning, although they did not have severely active disease. Adolescent patients with IBD had a significantly impaired HRQoL on four domains (body complaints, motor functioning, autonomy and negative emotions). The Impact-II discriminated well between patients with varying disease activity states on all domains. CONCLUSION: Adolescents with IBD have a severely affected HRQoL. Impairment on motor functioning and autonomy is a threat to gaining independence from caregivers, and a high occurrence of negative emotions places patients at risk for depressive and behavioural disorders. The Impact-II is recommended for clinical use because of its high discriminative validity.

Adolescent↗

PubMed2001

Social and emotional adjustment in young survivors of childhood cancer.

An overview is given of the social and emotional adjustment in young survivors of childhood cancer. The results are described in terms of self-esteem, anxiety, depression and posttraumatic stress (emotional adjustment), and in terms of behavioral functioning, social competence and school performance (socio-behavioral adjustment). Furthermore, factors related to survivors' adjustment are reported: demographics, illness- and treatment-related factors, coping and social support, and family and parental functioning. Limitations of the studies and consequences for future research are discussed. On the whole, the adjustment of young cancer survivors as a group was reasonably good, but the findings with respect to the emotional and social adjustment were inconsistent. This might be attributed to limitations of the study designs and the fact that the studies were not all directly comparable. In order to gain more insight into the predictors of adjustment, longitudinal studies are recommended, which should include control groups or standardized instruments with norm data, and use cancer-specific measures in addition to generic measures.

Adaptation, Psychological↗

PubMed1999

Adjustment of siblings to childhood cancer: a literature review.

Studies concerning sibling adjustment to childhood cancer and published since 1980 were reviewed. Sibling distress was described in terms of emotional, socio-behavioral, academic, physical and positive reactions. Secondly, characteristics and coping resources of siblings that are related to adjustment were summarized. Thirdly, the families' functioning, parental coping resources and family events that relate to adjustment were described. Finally, relevant aspects of the illness that may influence adjustment were described. Results of the 35 studies reviewed are summarized in a table containing general descriptors, methods and results. There are salient difficulties in comparison of the findings owing to variations in design, heterogeneity of the groups of siblings, diversity in sample size, and differences in conceptualizations of adjustment and coping. The lack of longitudinal studies, the precarious definitions and confounding of coping and adaptation, and the marginal role of siblings' coping efforts were identified as the most striking deficiencies in current research.

Adaptation, Psychological↗

PubMed1998

Emotions, coping and the need for support in families of children with cancer: a model for psychosocial care.

In the case of childhood cancer, the personal threats are severe for both the child, the parents and other family members. For the child, there is the threat to physical integrity, safety, security, and above all, to life. For the parents, there is the threat of losing the child. However, a number of studies have shown that psychopathological disturbances are rarely found in children with cancer or their parents. We may conclude from this that most children and parents use coping strategies that protect them from developing psychopathology. In organising support for families with a child with cancer, much can be learned from children's and parent's perceptions and reactions. When problems of adjustment arise, a thorough analysis of how children and parents perceive their situation, as well as an extensive analysis of their coping efforts, is necessary to direct effective supportive actions. A psychosocial support model is proposed which can be helpful in interpreting these emotions and coping strategies.

Adaptation, Psychological↗

PubMed1998

Use of alternative treatment in pediatric oncology.

The use of alternative treatment along with conventional cancer therapy is very popular. However, little is known about the use of alternative treatment in pediatric oncology. A study to determine which medical and demographic characteristics distinguish users from nonusers was conducted in a pediatric oncology sample of children with different survival perspectives. The parents of 84 children with cancer (43 patients in first continuous remission and 41 patients who had suffered a relapse or second malignancy) participated in the study and were surveyed with respect to the use of alternative treatment. The survival perspective appeared to be the most important variable distinguishing users of alternative treatment from nonusers. Twenty-six families (31%) had used or were using alternative treatment, of which 19 were families of children with cancer who had suffered a relapse (46%), and 7 were families of children with cancer in remission (16%). The most common types of alternative treatment used were based on homeopathy and anthroposophy (treatments based on autonomous medical concepts). Because of the finding that lower survival perspective is related to the use of alternative treatment, the use of alternative treatment conceivably could be a coping strategy based on illusions. Therefore, it is recommended that alternative treatment be discussed open-mindedly by all health care providers involved in the care of pediatric oncology patients.

Adaptation, Psychological↗

PubMed1997

Predictors of parental emotional adjustment to childhood cancer.

The main objective of the present study was to determine which variables predict the emotional adjustment of parents of children with cancer. Therefore, parents' emotional adjustment, in terms of depression, anxiety, feelings of loneliness, helplessness, uncertainty and positive feelings, were predicted with three models. (1) With a child model (including age of the child, time since diagnosis, being in remission or having a relapse, and depression of the child); (2) with a control strategies model (including four distinguished control strategies of parents); and (3) with a child and control strategies model (including a combination of the aforementioned variables). The four control strategies of parents of children with cancer included: the reliance on predictive control (having positive expectations); vicarious control (attributing power to the medical setting); illusory control (relying on luck and wishful thinking); and interpretative control (gaining knowledge). A total of 84 mothers and 79 fathers, of 84 children with cancer with different survival perspectives (in remission or with a relapse) participated in the study, and were assessed about the use of control strategies and adjustment. Lack of positive expectations about the course of the illness was most strongly related to negative emotions for mothers and for fathers. For mothers having a child with a relapse, predicted feelings of helplessness and uncertainty, and reported feelings of depression of the child, proved to be related to the feelings of uncertainty of the fathers. The findings demonstrate that the use of secondary control strategies contribute significantly to the emotional adjustment of parents of children with cancer.

Adaptation, Psychological↗

PubMed1997

Adjustment and coping by parents of children with cancer: a review of the literature.

Studies published since about 1980 on psychological adjustment and coping of parents of children with cancer were reviewed. First, results concerning parental adjustment in terms of psychological distress, marital distress, and family functioning were summarized. Secondly, the use of coping strategies such as social support, communication, and search for meaning were described. Thirdly, factors that influence parental adjustment to childhood cancer, such as coping strategies and illness-related and demographic variables were discussed. All studies are summarized in a review table, with information about the number of participating parents and children, the purpose, measures and major results. Difficulties in generalizing findings are possibly due to the heterogeneous group of children with cancer, the differences in reporting emotional problems by mothers and fathers, the difficulties in assessing illness-specific problems, and the diversity in the ways of assessing coping and adjustment.

Adaptation, Psychological↗