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Biomedical subjects

C Eiser

Publications and source records attributed to C Eiser.

At least 37 records · Page 2Linked to original sources
PubMed2001

Screening for diabetic retinopathy is well received by patients and may improve self-management intentions.

AIMS: To investigate patients' views of screening for diabetic retinopathy and the effects of the screening process on health beliefs and behavioural intentions. SETTING: A retinal screening clinic at a GP surgery in SW England. METHODS: Questionnaires administered before and immediately after screening by retinal photography. RESULTS: One hundred patients attended (94% of those invited); 12 had Type 1 and 88 Type 2 diabetes. Over 90% found the information, and seeing their retinal photograph, helpful. Sixty-three were found to have no problem and 37 had some type of eye problem detected. Overall, patients rated the news given at screening as better than expected (P < 0.001) and even those found to have problems mostly rated the news as good (P < 0.001). Detection of problems led patients to rate their recent eye health more negatively, but to be less pessimistic about future deterioration (P < 0.01). Patients with diabetes-related eye problems were more likely (P < 0.05) to say that they both should and would make changes to their self-management, but only after controlling for duration of diabetes. Those who had had diabetes longest declared least intention to change. CONCLUSIONS: Screening by retinal photography is acceptable to patients. Results suggest that screening modified health beliefs but had limited effect on behavioural intentions, with patients of longer disease duration being more reluctant to change their self-management. Opportunities during retinal screening for advice on self-management could be more effectively exploited.

Adult↗
PubMed2001

The measurement of quality of life in children: past and future perspectives.

Quality of life (QoL) is central to pediatric practice. Where it is possible to manage but not cure a disease, it is important to determine how far treatment and disease compromise the child's QoL. In this way, informed judgments can be made about whether or not treatment is appropriate, and, where there is a choice, which choice might be the best option for the child. In this review, we consider different approaches to measuring child QoL, report a methodological review of measures currently available, evaluate the quality of these measures, and finally consider the implications for the future development and use of QoL measures. Computer searches identified 269 potentially relevant articles, of which 137 were included in the review. Of these, 43 were primarily concerned with the development of a new measure of QoL, 79 reported subsequent development of these same measures, and 15 used a battery approach to measure QoL. All currently available measures have limitations (e.g., limited psychometric data, lack of parallel forms for children and proxy raters, and insufficient attention to children's ability to complete paper-and-pencil measures). However, recommendations are made on the basis of those considered to be most satisfactory. It is essential that attempts be made to use QoL measures in research (e.g., evaluation of clinical trials and alternative treatments) to gain experience that will guide development of a second generation of more sophisticated measures. Despite the practical difficulties identified, measurement of QoL remains of central interest to all those concerned with the well-being of children.

Child↗
PubMed2001

A review of measures of quality of life for children with chronic illness.

AIMS: To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures. METHODS: Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria. RESULTS: Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status. CONCLUSIONS: We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.

Activities of Daily Living↗
PubMed2001

Quality-of-life measures in chronic diseases of childhood.

SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts? OBJECTIVES: (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs. METHOD: Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites. RESULTS: Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESULTS - TO WHAT EXTENT ARE ADULT MEASURES USED IN THE EVALUATION OF HEALTHCARE INTERVENTIONS IN CHILDREN?: Three studies were identified where adult measures were used with very few changes made for children. In 11 studies involving nine separate measures of QoL, adult measures were used as a model for work with children. RESULTS - HOW APPROPRIATE ARE ADULT MEASURES FOR USE WITH CHILDREN?: Adult measures may fail to tap the specific aspects of QoL that are important to the child. Measures based on adult work impose considerable response burden for children, in terms of length, reading skills and response scale. Wording and format of adult measures may need to be modified to account for children's cognitive and language skills. More basic research is needed to determine the level of response burden that children of different ages can manage. Assessments of difficulty (e.g. reading age) need to be routinely included with information about new measures. RESULTS - TO WHAT EXTENT DO CHILD SELF-REPORTS CORRESPOND WITH ASSESSMENTS MADE BY PARENTS AND CARERS?: Fourteen studies were identified in which concor-dance between child and parent was investigated, often as part of the development of a new measure. There was some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results. There was no simple relationship between concordance and moderating variables such as age, gender and illness, but this conclusion was addressed only very rarely. RESULTS - HOW FEASIBLE AND RELIABLE ARE PROXY MEASURES OF QOL IN DIFFERENT DISEASE CONTEXTS?: Only five papers fulfilled the review criteria. Evaluation is difficult because authors fail to justify their choice of measures, and do not report critical information such as completion rates or missing data. Use of existing measures can potentially eliminate the time and expense required to develop a comprehensive measure of QoL, but a full battery of standardised tests may be expensive in terms of time for administration and scoring. In addition, battery measures tend to be lengthy and therefore demanding for sick patients. They are not recommended for work with children. RECOMMENDATIONS FOR RESEARCH - MINIMUM CRITERIA FOR NEW MEASURES: A set of procedures needs to be established for the development of new measures. These need to draw on the experience gained in development of child and adult measures to date. Basic research to enhance understanding of how children interpret questions in QoL measures is recommended. We need to understand the differences in meaning of items between children and adults, and between children of different ages. Some attempt to develop measures for children of 6 years or more have been reported, and these should be further developed. (ABSTRACT TRUNCATED)

Adolescent↗
PubMed2001

Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health.

The relationship between child- and parent-reported quality of life (QOL) and the effects of parental mental health, illness stressors, and child vulnerability was explored using two measures of QOL: the Pediatric Cancer Quality Life-32 (Varni et al., 1998a) and the Disquol (Eiser, Cotter, Oades, Seamark, & Smith, 1999). Thirty-two children with acute lymphoblastic leukaemia (mean age = 8.92 years) and 36 parents completed measures of QOL when attending routine clinic. In addition, parents also completed the General Health Questionnaire (GHQ-28), perception of the child's vulnerability, and illness-related stressors. Significant correlations were found between the overall scores on the two child-completed QOL measures, with a range of poor, moderate to good correlations found between the individual subscales. Poor to moderate concordance was found between child and parent reports. Children who self-reported poorer QOL had mothers who were more depressed. Parents who reported poorer QOL for their child reported more illness stressors and perceived their child as being more vulnerable. Assumptions that concordance between child and parent ratings of QOL is a necessary requirement for new measures of QOL are challenged.

Adult↗
PubMed2000

The measurement of quality of life in young children.

The purpose of this paper is to argue for a measure of quality of life (QoL) for children aged between 4 and 8 years, describe the obstacles in developing such a measure, and provide evidence that it is possible to elicit directly information from children. Finally we summarize and critique measures that are currently available for this purpose.

Child↗
PubMed2000

The development of a theoretically driven generic measure of quality of life for children aged 6-12 years: a preliminary report.

OBJECTIVE: To report the development and psychometric properties of a generic computer-delivered measure of quality of life (QoL) suitable for children aged 6-12 years: the Exqol. The theoretical model adopted is based on an assumption that poorer QoL is the result of discrepancies between an individual's actual ('like me') and ideal self ('how I would like to be'). METHOD: The Exqol consists of 12 pictures, each of which is rated twice; first in terms of 'like me' and second as 'I would like to be'. The Exqol is delivered using a Macintosh Powerbook and takes approximately 20 min to complete. Data are reported for 58 children with asthma (Mage = 8.95 years) and 69 healthy children (Mage = 749 years). In order to determine validity of the Exqol, children with asthma also completed the Childhood Asthma Questionnaire (CAQ) and their mothers completed a measure of child vulnerability and caregiver QoL. RESULTS: Higher discrepancies were found for children with asthma compared with healthy children (P < 0.05). For children with asthma, significant correlations were found between discrepancy scores and two of the four subscales of the CAQ. Children who rated their asthma to be more severe also had higher discrepancy scores (P < 0.05). CONCLUSIONS: The Exqol has acceptable internal reliability and validity and distinguishes between children with asthma and healthy children. These data provide preliminary support for the theoretical assumption that QoL reflects perceived discrepancies between an individual's actual and ideal self. Methodological refinements to the Exqol are suggested.

Asthma↗
PubMed2000

Examining the psychological consequences of surviving childhood cancer: systematic review as a research method in pediatric psychology.

OBJECTIVE: To report the results of a systematic review to determine the psychological consequences of surviving childhood cancer. METHODS: Searches were conducted using Psyclit, Medline, Cinahl, and Bids and articles selected on the basis of predefined criteria. Key information was extracted to data sheets and these were rated by two coders. RESULTS: Twenty studies were identified, seventeen from the United States. Survivors did not show deficits in measures of anxiety, depression, or self-esteem when compared with population norms or matched controls. Survivors of some cancers (bone tumors) have poorer outcomes. CONCLUSIONS: The results of this review support findings of previous descriptive reviews. Methodological problems include poorly reported medical information (for example, time since diagnosis), heterogeneous samples, self-selection of participants, poorly chosen/lack of suitable measures, and a lack of longitudinal work. Findings are discussed in terms of the need for cross-cultural work on adjustment to childhood cancer, the need for studies to take on a more developmental approach, and for greater national and international collaboration.

Adaptation, Psychological↗
PubMed1999

Health-related quality-of-life measures for children.

Our purpose is to report the development and psychometric properties of a generic computer-delivered measure of health-related quality of life (HRQL) suitable for children aged 6 to 11 years, the Exeter HRQL scale (EHRQL). The theoretical model adopted is based on a definition of HRQL which assumes that HRQL is the result of discrepancies between an individual's actual self and ideal self. The EHRQL consists of 16 pictures, each of which is rated twice, first in terms of "like me" and second as "I would like to be". The difference between these scores is assumed to be indicative of HRQL. The EHRQL is delivered using a Macintosh Powerbook and takes approximately 20 min. Data are reported for 60 children with asthma (mean age = 8.93 years) and 69 healthy children (mean age = 7.49 years). In addition, children with asthma completed the Childhood Asthma Questionnaire (CAQ) and a measure of self-efficacy. For children with asthma, significant correlations were found between discrepancy scores and 3 of the 4 subscales of the CAQ. In addition, higher discrepancies were found for children with asthma compared with healthy children (p < 0.05). The EHRQL has acceptable internal reliability, and these data provide preliminary support for the theoretical assumption that HRQL reflects perceived discrepancies between an individual's actual self and ideal self. The measure also distinguished, as predicted, between children with asthma and healthy children. Methodological refinements to the EHRQL are suggested.

Asthma↗
PubMed1999

The Perceived Illness Experience Scale (PIE): reliability and validity revisited.

This paper reports psychometric evaluation of the Perceived illness Experience Scale (PIE). This includes eight sub-scales developed to determine the impact of a chronic illness from the patient's perspective. The sample included 34 patients (mean age = 17 years) successfully treated by limb salvage procedures for a primary bone tumour. Patients also completed measures of well-being (the SF-36) and function. To determine the relationship between patient and proxy ratings, mothers also completed the PIE. Evidence of construct validity of the PIE was obtained from significant correlations between PIE and SF-36 scale scores. There were also significant correlations between function and three of the eight sub-scales of PIE. Good correlations between patients' and mothers' ratings suggests that mothers can be useful proxy raters where patients are unable to provide data themselves. These data suggest that evaluations of patients following limb salvage surgery should not be limited to function measures alone, but need to include assessment of the perceived impact of treatment.

Adolescent↗
PubMed1998

Correlates of well-being in mothers of children and adolescents with cystic fibrosis.

Fifty mothers and 44 well siblings of children and adolescents with cystic fibrosis (CF) participated in this study to identify correlates of maternal well-being. Participants completed postal questionnaires which assessed maternal well-being, problems experienced surrounding the illness and treatment and the nature of the sibling relationship. Due to the demanding nature of treatment and the fact that CF is both genetic and incurable at present we anticipate mothers of these children will experience higher levels of stress and consequently poorer well-being than the normal population. In addition, illness severity, problems with adherence to treatment, child communication, maternal support and the sibling relationship are expected to relate to maternal well-being. Mothers in this sample did not rate their well-being as any different to the normal population. Results suggest that mothers are likely to rate their own well-being as poor when they report more frequent problems surrounding the illness and treatment and well children rate their sibling relationship as having frequent disagreements and aggression. This study highlights factors that are related to maternal well-being in families where one child has CF. These mothers as a group do not appear to be experiencing more stress in their daily lives than the normal population but certain illness and family variables are related to their well-being when examining the mothers on certain dimensions.

Adolescent↗
PubMed1998

Brief report: assessment of body image in survivors of childhood cancer.

OBJECTIVE: To establish preliminary reliability and validity data of the Body Image Instrument (BII), a 28-item self-report measure developed to assess body image in adolescents and young adults with cancer. METHOD: As part of a larger study assessing long-term adjustment in survivors of childhood cancer, 40 males and 27 females (mean age = 19.69 years, SD = 3.87) completed the BII and two validation measures: the SF-36 health survey and the Perceived Illness Experience measure. RESULTS: The five BII subscales--General Appearance, Body Competence, Others' Reaction to Appearance, Value of Appearance, and Body Parts--exhibited moderate to high internal reliability and concurrent validity. No significant sex differences in body image emerged, nor was age at diagnosis or time since diagnosis significantly correlated with body image. CONCLUSIONS: The measure may be of value in clinical settings, where it could be used to identify adjustment problems related to body image disturbance in pediatric cancer patients.

Adaptation, Psychological↗
PubMed1998

Development and evaluation of an information booklet for adult survivors of cancer in childhood. The United Kingdom Children's Cancer Study Group Late Effects Group.

AIMS: To determine the need for information among survivors of childhood cancer, to assess the acceptability of an information booklet, and to investigate the effectiveness of the booklet in increasing knowledge and influencing health related behaviours. SUBJECTS: Fifty survivors of childhood cancer (age range 14-32 years) who were consecutive attendees at a long term follow up clinic. METHODS: The booklet was developed for young people aged 14 years and above by the United Kingdom Children's Cancer Study Group Late Effects Group. Included is information about treatment of cancer, general advice about a healthy lifestyle, the rationale for long term follow up, and information about employment and life insurance problems. Survivors were interviewed at the follow up clinic, offered the booklet, and contacted approximately one week later for a telephone interview. The clinic interview assessed survivor's understanding of their illness and treatment and its impact on their lives, and their preferences for further information. The telephone interview determined survivors' general reaction to the booklet, whether it increased knowledge and influenced health related behaviours. RESULTS: All those interviewed accepted the written information and agreed to a follow up interview. Survivors were enthusiastic about being given more information. Over three quarters learned new information from the booklet. There were no indications that the information was associated with anxiety for any demographic or clinical subgroups. After reading the booklet there was an increased awareness of the risk from sunbathing (p < 0.05), and greater appreciation of the importance of follow up (p < 0.05). CONCLUSIONS: These results suggest that written information is likely to be an acceptable and effective supplement to discussions with medical professionals and may readily be incorporated into long term follow up clinics.

Adolescent↗
PubMed1998

Practitioner review: long-term consequences of childhood cancer.

Survival rates in childhood cancer now approach approximately 65%, depending on the specific cancer. Success has been achieved through the use of increasingly aggressive treatments (chemotherapy, radiotherapy, bone-marrow transplantation). These are now recognised to be associated with a range of physical late effects, including problems associated with growth and endocrine function, sensory function, fertility, liver, cardiac, and kidney damage. Recognition of these physical late effects raises the issue of related problems in psychological, educational, and behavioural functioning. There is considerable evidence to suggest that children who are younger on diagnosis are more at risk in terms of cognitive and behavioural late effects compared with those who are diagnosed later. Cancer remains a rare disease in children and consequently only those professionals attached to centres specialising in the care of children with cancer are likely to receive a significant number of referrals. It is important to establish a psychological support service as an integral part of long-term care in order to (a) establish more accurately the incidence of social and psychological late effects and (b) offer advice to the individual about the possible long-term effects of cancer treatment on future health, social, and employment prospects.

Adaptation, Psychological↗
PubMed1997

Validity of the Rotterdam Symptom Checklist in paediatric oncology.

In order to determine the validity of the Rotterdam Symptom Checklist (RSC) for use with paediatric patients, a sample of 47 mothers with a child with acute lymphoblastic leukaemia (ALL) was asked to complete the RSC, the Play Performance Scale for Children PPSC and a measure of daily activity (HDI: Questionnaires were completed during routine outpatient visits. There were no effects of child age on number of symptoms reported. The physical symptom subscale of the RSC distinguished between children in terms of treatment status and number of hospitalisations. However, the psychological symptom subscale did not distinguish between these groups. Limitations of the scale for work with children are considered. These include difficulties experienced by patents in reporting psychological symptoms for their children, and the inappropriateness of a scale developed for adults to assess children. In the absence of other measures, the RSC can be used for children, but a more developmentally appropriate measures is needed.

Activities of Daily Living↗