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Biomedical subjects

C Eiser

Publications and source records attributed to C Eiser.

At least 19 recordsLinked to original sources
PubMed2007

A qualitative investigation of school-aged children's answers to items from a generic quality of life measure.

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

Child↗
PubMed2006

The effects of growth hormone treatment on health-related quality of life in children.

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

Adolescent↗
PubMed2006

School experiences after treatment for a brain tumour.

BACKGROUND: Children surviving a brain tumour face major difficulties including learning problems, lengthy school absences and psychosocial problems, all of which can impact on school functioning. Our aims were to provide information for parents and teachers about the skills and resources of this group. Specifically, we aimed to: describe the special educational needs of these children; document the impact of diagnosis and treatment on school attendance; compare parent and teacher assessments of social, emotional and behavioural difficulties. METHODS: Forty families agreed to participate (response rate = 58.82%). The children (19 males and 21 females) were aged from 6 to 16 years and had completed treatment at least 2 years previously (range = 2 years-12 years 5 months). Questionnaires (Strengths and Difficulties and school experience) were completed by mothers and teachers. RESULTS: Survivors were experiencing a wide range of physical, learning and interpersonal difficulties, according to parent and teacher reports. Almost half the children (n = 19) had ongoing neurological problems that were significant enough to require special help at school. Literacy and numeracy were the most common learning difficulties. Parents also rated brain tumour survivors as having more behavioural and emotional problems than would be expected from population norms. For example, survivors were rated as having more Total Difficulties (t = 6.86, P < 0.001), Emotional Symptoms (t = 8.82, P < 0.001), Hyperactivity (t = 2.25, P = 0.03), Peer Relationship Problems (t = 7.58, P < 0.001) and poorer Pro-social Behaviour (t = -3.34, P = 0.002) than would be expected from population norms. These problems were also seen to be having a significant impact on the child's functioning (t = 3.95, P < 0.001). Teachers rated these problems as less serious than parents. CONCLUSION: These children experience significant problems in school some time after diagnosis and when they are considered medically cured. Closer school-hospital liaison is essential to maximize integration and achievement in these children.

Absenteeism↗
PubMed2005

Growth hormone treatment and quality of life among survivors of childhood cancer.

BACKGROUND: We report the health-related quality of life (QOL) of survivors of childhood cancer (acute lymphoblastic leukaemia, ALL, or central nervous system, CNS, tumour), and whether or not they had growth hormone deficiency (GHD) requiring growth hormone treatment (GHT). METHOD: We assessed 77 survivors of childhood ALL (n = 51) or CNS tumours (n = 26), aged between 8-18 years, and free from disease for > or = 4 years. Survivors and their mothers independently rated survivors' QOL, and mothers completed semi-structured interviews to determine their views of the benefits and disadvantages of GHT. RESULTS: Survivors, especially those treated for a CNS tumour, reported poorer QOL compared with UK population norms. Although survivors of ALL reported better QOL than survivors of CNS tumours, there were no differences depending on whether or not they were prescribed GHT. However, mothers reported that those prescribed GHT had worse QOL than those not. All but 2 survivors were responsible for their own injections. A minority of mothers were disappointed with the child's rate of growth, and reported that children experienced pain with injections. CONCLUSION: We conclude that QOL in survivors of childhood cancer is compromised compared with the normal population, especially following CNS tumours. Longitudinal studies are vital to determine whether GHT can contribute to improved QOL for cancer survivors, especially those who experience more intensive initial therapy regimes.

Adolescent↗
PubMed2005

Adolescents' and their parents' views on the acceptability and design of a new diabetes education programme: a focus group analysis.

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

Adolescent↗
PubMed2005

Development of a measure of the health-related quality of life of children in public care.

OBJECTIVES: To validate PedsQL for children in public care and develop an 'in-care' module. DESIGN AND SETTING: Questionnaire development and validation. Questionnaires were completed in placement. A total of 69 children in public care (aged 8-18 years) and their carers were recruited through routine paediatric assessments, and 662 children not in public care were recruited from local schools. MEASURES: Self- and proxy-report versions of PedsQL generic module and the 'in-care' module. RESULTS: Cronbach's alpha for the generic module ranged from 0.66 to 0.88 and from 0.74 to 0.90 for self- and proxy-report respectively. Lower scores were reported for children in care compared with peers living at home for proxy- and self-report. Proxy- and self-report correlation ranged from 0.43 to 0.60 (P < 0.001). Cronbach's alpha for the in-care module was 0.87 and 0.91 for self- and proxy-report respectively. Proxy- and self-report scores showed significant correlation with generic module scores. The highest correlations were seen with sub-scales measuring Psychosocial Functioning (e.g. Emotional Functioning: Pearson's r = 0.67 and 0.59, P < 0.001 for self- and proxy-report respectively). Proxy- and self-report correlation was 0.45 (P < 0.001). CONCLUSIONS: We found PedsQL generic module and the newly developed 'in-care' module to have excellent internal reliability for self- and proxy-report. Validity was established for both measures and significant correlation found between child and proxy ratings. Although further testing of the measures is recommended, both have potential value in assessing the success of placements and could provide a reliable and valid tool for individual patient analysis in clinical practice and for research with this group.

Activities of Daily Living↗
PubMed2005

Mothers' attitudes to the randomized controlled trial (RCT): the case of acute lymphoblastic leukaemia (ALL) in children.

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

Adolescent↗
PubMed2005

Parenting the premature infant: balancing vulnerability and quality of life.

BACKGROUND: Relationships between child quality of life (QOL), maternal well-being and parenting were explored in a questionnaire study. METHOD: Mothers of 126 full-term (FT) and 91 pre-term (PT) infants during the child's second year of life completed measures of their own and the child's quality of life and behavioural difficulties. We developed a measure of parenting style derived from Regulatory Focus Theory (RFT), to distinguish greater reported use of promotion as opposed to prevention strategies (emphasising gains rather than losses, and encouraging pursuit of goals rather than prevention of harm). RESULTS: The two groups of mothers showed no differences on the parenting measure, but those in the PT compared with the FT group described their infant as having lower QOL and more behavioural and mood problems, and rated their own well-being as less satisfactory. Greater use of promotion was associated with reports of fewer difficulties (better QOL) for the child and better mothers' well-being. Differences in mothers' well-being as a function of group (FT vs. PT) and promotion were strongly mediated by mothers' perceptions of their child's difficulties. At the same time, associations with child difficulties were partly mediated by mothers' well-being, suggesting that maternal distress may have partly contributed to higher perceptions of such difficulties. Among PT infants, the degree of prematurity predicted child difficulties, but was not consistently related to mothers' well-being. DISCUSSION: Mothers of PT infants report more physical health and behavioural difficulties than mothers of FT infants, but specific parenting styles can contribute to child difficulties and QOL in both infants and their mothers. CONCLUSION: We conclude that RFT has potential for understanding the conflicts experienced by parents caring for vulnerable children.

Adult↗
PubMed2003

What can we learn from other illnesses?

I would like to begin by putting forward the idea that there is much to be gained from a more generic as opposed to a medical model in working with chronically sick children. I would like to consider the potential advantages of this generic approach, and then go on to consider more specifically what can be learned, firstly, from the specific example of childhood cancer and, secondly, from chronic illness more generally. Whether we work with children with cancer, cystic fibrosis or any other chronic condition, we have to be impressed by the child's capacity to 'survive against the odds'. While early work described the problems or deficits shown by sick children, it is now clear that there is huge variability in outcomes. Many children show extraordinary resilience and coping. We are increasingly concerned about quality of life (QOL) as well as quantity of survival. In expanding on the thesis that much can be learned from other diseases, I am going to use QOL as an example.

Adaptation, Psychological↗
PubMed2003

The value of the PedsQLTM in assessing quality of life in survivors of childhood cancer.

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

Adolescent↗
PubMed2003

Current approaches to assessing the quality of life in children and adolescents.

Urologists are well aware of the importance of the quality of life (QoL) in determining the success of their treatments. The public are increasingly aware of this aspect of medicine. The advent of fetal ultrasonography has made knowledge of QoL in long-term survivors of congenital anomalies essential in counselling about pregnancy termination. It is becoming mandatory that clinical trials involving adults include an assessment of QoL. For children, measuring QoL has been restricted to life-threatening conditions such as cancer or transplantation medicine. Measuring QoL is difficult in children and adolescents, and this is reflected in the few suitable instruments available. The development of sexuality contributes a further difficulty as many anxieties typical of those with genital anomalies may be common to all teenagers. Several instruments rely on the opinions of a proxy (parent or carer) but self-assessment by the child is preferable where possible. The need for child self-assessment is supported by finding little concordance between child and proxy assessments. While measuring QoL is challenging, we provide a substantial case for greater consideration of QoL in paediatric urology.

Adolescent↗
PubMed2002

The school experience of the child with cancer.

OBJECTIVE: To review literature investigating school absence, behaviour problems and social relationships of children with cancer on return to school. Additionally, we reviewed interventions aimed at promoting successful school re-entry for children with cancer, and increasing classmates and teachers understanding of childhood cancer. METHODS: Electronic searches were used to identify studies examining the effects of school re-entry on children with cancer. RESULTS AND CONCLUSIONS: School absences are higher for children with cancer than healthy children and those with other chronic conditions. Although there is mixed evidence about whether children have significant behavioural problems, studies involving social relationships generally conclude that children with cancer are more sensitive and isolated than peers, according to both peer and teacher report.

Absenteeism↗
PubMed2002

Attack context: an important mediator of the relationship between psychological status and asthma outcomes.

BACKGROUND: The importance of psychosocial variables in asthma is increasingly recognised, although attempts to relate these to asthma outcomes often produce only weak relationships. This study aimed to identify whether such relationships might be obscured by the effects of recent asthma experience on psychological status. METHODS: An adult community sample of 37 patients who had suffered a recent attack of asthma and 37 with stable asthma were given measures of panic fear and control confidence. The relationship with subsequent emergency service use was examined using two way ANOVA and correlational analyses. Covariate influences (psychiatric morbidity, age, sex, treatment level, asthma duration, social status) were considered. RESULTS: Control confidence predicted emergency service use in different ways for recent attack and stable asthma patients. This interaction was highly significant (F(1,69) = 10.32, p<0.005) with high confidence relating to an increased risk of an attack in the recent attack group and low confidence relating to increased risk for the stable asthma group. There was also an interaction between panic fear and attack context (F(1,69) = 11.05, p<0.005) with low panic fear resulting in more attacks for recent attack cases. CONCLUSIONS: Attack context (having a recent attack) is an important mediator of psychological status. Strong cognitive/affective responses to attacks may motivate improved self-care and this represents a window of opportunity for self-care interventions. Weak cognitive/affective responses to attacks may reflect denial and require different intervention approaches. For those with recently stable asthma the relationships are qualitatively and quantitatively different, and the implications for intervention are also discussed.

Adult↗
PubMed2002

Male sex and low physical activity are associated with reduced spine bone mineral density in survivors of childhood acute lymphoblastic leukemia.

Survivors of acute lymphoblastic leukemia (ALL) are at risk of osteoporosis and obesity. We studied bone mineral density (BMD), percent of fat mass (%FM), and activity levels in survivors of ALL treated without radiotherapy. Lumbar and total areal BMD (g/cm2) and %FM were measured in 28 survivors (aged 5.7-14.7 years) of childhood ALL by dual-energy X-ray absorptiometry (DXA) scan (GE Lunar, Prodigy) an average of 5 years after completion of chemotherapy (UK Medical Research Council randomized trial protocol XI [UKALL XI]). One boy fractured his arm during treatment. Apparent volumetric lumbar BMD (BMD(vol); g/cm3) was calculated and %FM was adjusted for sex and age (%FM(adj)). Physical activity was measured by accelerometer and questionnaire. The results were compared with 28 sex- and age-matched healthy controls. Total body and lumbar areal BMD (g/cm2) were not different between the ALL group and the control group. However, mean lumbar BMD(vol) in survivors of ALL was significantly lower than in controls (0.303 +/- 0.036 g/cm3 vs. 0.323 +/- 0.03 g/cm3; p < 0.01), which mostly was caused by the difference in boys (0.287 +/- 0.032 g/cm3 vs. 0.312 +/- 0.027 g/cm3; p < 0.05). Weekly activity score by questionnaire was significantly lower in the ALL group than in the control group (geometric mean 50 vs. geometric mean 74; p < 0.05). Male gender, low activity levels and an intravenous (iv) high dose of methotrexate were associated with low lumbar BMD(vol). Patients who received an iv high dose of methotrexate (n = 18) had significantly higher %FM(adj) than those with intrathecal methotrexate only (n = 10; 141 +/- 70% vs. 98 +/- 37%;p < 0.05). In conclusion, male survivors of childhood ALL have reduced lumbar BMD(vol), whereas no such difference was seen in girls. Overall, survivors of ALL were physically less active than their healthy controls and lower activity correlated with lower lumbar BMD(vol) and higher %FM(adj).

Adolescent↗
PubMed2001

Can parents rate their child's health-related quality of life? Results of a systematic review.

A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions: is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.

Adolescent↗
PubMed2001

Treatment demands and differential treatment of patients with cystic fibrosis and their siblings: patient, parent and sibling accounts.

Cystic fibrosis (CF) is a progressive disease with no known cure. Advances in diagnosis and treatment have resulted in patients living longer and thus families live with the illness for longer. Treatments are becoming increasingly demanding and are largely performed in the family home. Mothers are often reported to experience greater stress and poorer adjustment than mothers of well children or population norms. Patients and siblings are also reported to display adjustment difficulties. Siblings have rarely been included in research designs. This qualitative study investigates the impact of CF and treatment on eight patients, eight mothers, one father and eight siblings. A family systems perspective was adopted. Each individual was interviewed independently using semistructured interviews. Patients and siblings were aged between 9 and 21 years. Qualitative analyses revealed high levels of non-adherence (intentional and unintentional) and parental involvement in treatment, minimal involvement of siblings, and preferential treatment towards patients. Demanding treatment, coupled with the progressive nature of CF, promote high levels of parental involvement for younger children as well as older teenagers, often due to attempted or actual non-adherence. Siblings may receive less attention while patients' needs take priority. Future development of a measure of adherence suitable for children and adolescents should take into account different motivations for non-adherence, particularly regarding the level of personal control over adherence to treatment. In addition, the potential impact of having a brother or sister with CF should not be underestimated and the needs of siblings should not go unnoticed.

Adaptation, Psychological↗