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Biomedical subjects

M Bullinger

Publications and source records attributed to M Bullinger.

At least 19 recordsLinked to original sources
PubMed2006

[Methodological basis and aspects of quality of life].

Quality of life is an important patient-relevant end point. Originally viewed with some scepticism, the concept of quality of life has now been largely accepted internationally. Numerous methodologically sound ways of measuring have become available. An ever increasing number of studies include quality of life. Also, organizations providing care are becoming more interested, but including an assessment of quality of life when researching care provisions still requires greater attention. Results of research on quality of life can contribute to assessing needs, evaluate treatment, control quality and improve health within society.

Germany↗
PubMed2006

The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia.

As quality of life (QoL) research is increasingly focusing on children and adolescents with haemophilia, the need for both age-appropriate and disease-specific assessment tools becomes apparent. Therefore, a set of questionnaires measuring QoL in children and adolescents with haemophilia was simultaneously developed in six languages within the European Haemo-QoL project (Haemophilia, 8, 2002, 47; Haemophilia, 10, 2004, 17). For implementation in larger studies and for use in daily clinical routine, a both short and psychometrically robust version of the questionnaire is needed. Using from the Haemo-QoL field study complete data sets of 306 children and adolescents (4-16 years) and their parents, a multivariate approach of item selection was applied to construct an eight-item instrument, the Haemo-QoL Index. The instrument is applicable to different age groups and represents the core content as well as the multidimensional structure of the original long versions. According to preliminary analyses, the index's psychometric performance concerning reliability and convergent validity is good. Further validation of the instrument's performance on a new and independent sample is needed.

Adolescent↗
PubMed2006

Comparing two measures of quality of life for children with haemophilia: the CHO-KLAT and the Haemo-QoL.

Disease-specific measures of quality of life (QoL) for children with haemophilia are now available for use in clinical studies [Haemophilia, 10, 2004, 9-16]. One of these measures, the Canadian Haemophilia Outcomes - Kids' Life Assessment Tool (CHO-KLAT), was developed in Canada with emphasis on the perspectives of children [Pediatr Blood Cancer, 47, 2006, 305-11; Haemophilia, 10, 2004, 34-43]. Another, the Haemo-QoL, was developed in Europe, with emphasis on the perspectives of clinicians [Haemophilia, 8, 2002, 47-54; Haemophilia, 10, 2004, 17-25]. While these two measures are unique and independent, researchers from both studies were collaboratively linked throughout development and testing. This study presents the results of a joint assessment of the two measures with respect to their strengths, limitations and unique contributions. The primary questions addressed were: 1 What is the relationship between the CHO-KLAT and the Haemo-QoL in terms of summary scores and item content? 2 What are the methodological strengths, limitations and unique contributions of each measure? We conducted a retrospective analysis of data from field testing of both measures. The analysis included a comparative assessment of the basic validity, reliability and items used in each measure. Overall, the CHO-KLAT and the Haemo-QoL are promising and valuable measures of QoL for children with haemophilia. Our analyses confirmed the basic psychometric properties of both tools, but identified some discrepancies between them. Additional data will allow for greater understanding of these discrepancies and lend clarity to how the tools should be used in clinical studies (separately or merged). The present recommendation is that the measures be run independently, but preferably concurrently in studies of children with haemophilia.

Adolescent↗
PubMed2005

Assessment of health-related quality of life in persons after traumatic brain injury--development of the Qolibri, a specific measure.

BACKGROUND: Health-related quality of life (HRQOL) associated or not with the measurement of neuropsychological functioning is a relatively new outcome variable in the field of traumatic brain injury (TBI). In both cases, accuracy and precision are increased in outcome estimation. Validation of generic, cross-culturally (cc) administered HRQOL measures in persons after TBI is not yet well established. Disease-specific HRQOL instruments do not exist in an international context. The objective here is to present the TBI consensus group's (QOLIBRI-Group) approach in cc development of a specific HRQOL measure--the QOLIBRI (Quality of Life after Brain Injury). METHODS: Special issues of TBI-specific instrument creation will be highlighted as well as cc questionnaire construction, development, translation and psychometric testing. RESULTS: The validation process of the preliminary version of the disease-specific QOLIBRI in 15 countries and 13 languages will be described. The QOLIBRI assesses HRQOL within six domains (physical condition, thinking activities, feelings and emotions, functioning in daily life, relationships and social/leisure activities, current situation and future prospects). The QOLIBRI integrates disease-specific issues of TBI patients, i.e. cognition, existential aspects (as the sense of self) etc., which are missing in generic tools. CONCLUSION: In TBI patients, generic and disease-specific aspects of HRQOL need to be assessed with measures of adequate psychometric quality, applicable across different populations and cultural conditions. The QOLIBRI is a promising instrument for sensitive patient-centered specific outcome evaluation after TBI.

Brain Injuries↗
PubMed2005

[Structural validity of the Short Form 36 (SF-36) in patients with rheumatic diseases].

BACKGROUND: Quality of life is gaining relevance as a criterion of success in therapeutic outcome studies. In order to record quality of life, disease-specific instruments are being used as well as generic instruments. Generic instruments offer the possibility to compare outcome among different indications; however for this it is necessary to prove the differential factorial validity of the instrument's structure. AIM OF THE STUDY: Using structural equation modeling the SF-36 was administered to a sample of patients with rheumatic diseases. The sensitivity to change of the measure was calculated after six months. Furthermore, age- and sex-specific scale values were calculated and compared with norm data. METHODS: SF-36 data of 436 patients as well as sex and age from two scientific rehabilitation research projects were pooled for this secondary analysis. RESULTS: The structure of the questionnaire proves to be acceptable and comparable with international results. The confirmatory analysis supports the best fit for a model with crossloadings assuming correlated main dimensions. Sensitivity to change is low in general. The best effect size is found for the subscale pain. The comparison with norm data shows that patients are impaired particularly within their physical health (regarding the SF subscales) both at the beginning of the treatment and after six months. In all age groups men have better conditions than women. CONCLUSIONS: The generic SF-36 show sufficient factorial validity. From this point of view there is no objection to using the SF-36 in patients with rheumatic diseases. Indeed the use of the SF summary scales as a representation of (uncorrelated) physical and mental health must be questioned critically.

Adolescent↗
PubMed2005

Self-reported eye symptoms and related diagnostic findings--comparison of risk factor profiles.

UNLABELLED: Profiles of factors affecting self-reported eye symptoms and objectively determined tear film characteristics have been examined and compared using data from 814 office workers. Multiple logistic regression analysis reveals significantly increased risks of subjective perception of eye symptoms for female gender, use of contact lenses and persons with health problems. A reduced break-up time (BUT) depends on personal criteria such as a history of eye disease and female gender. Age under 40 years, high relative humidity and formaldehyde exposure exceeding the 90th percentile are protective regarding BUT. For a thin lipid layer (as an indication of dry eyes) significantly increased risks are detected for high particle load, high endotoxin concentration and female gender. A thick lipid layer (as an indication of inflamed eyes) is significantly associated with a low educational level. The estimation of foam in the medial eye canthus seems to be unsuitable for evaluating indoor problems. The risk factor profiles agree on a few points only. The objectively examined thin lipid layer is the best eye-related indicator of the indoor environment. We therefore conclude that there is a need for the development and application of objective clinical methods for field monitoring in parallel with questioning. PRACTICAL IMPLICATIONS: Self-reported eye symptoms in conjunction with indoor environmental problems should be validated by objective medical examinations such as semi-quantitative estimation of the superficial lipid layer, measurement of the break-up time or assessment of conjunctival epithelial damage. For unbiased proof of environmental impact, personal factors such as acute illness or low job satisfaction should be excluded. As a minimum requirement, measurements of particles, NO(2) and relative humidity (and if possible endotoxin) should be carried out to detect any indoor environmental reason for eye symptoms.

Adult↗
PubMed2004

[The Spanish version of the German health-related quality of life questionnaire for children and adolescents: the Kindl].

OBJECTIVES: To obtain a Spanish version of the Kindl semantically and culturally equivalent to the original German version and to test its psychometric properties. MATERIAL AND METHODS: The methodology used in the adaptation process was based on the forward-backward translation method. To assess the psychometric properties of the Spanish Kindl, the pilot test of the project "Screening for and promotion of HRQL in children and adolescents: a European Public Health perspective (Kidscreen)" it was include in. A classroom was selected for each educational level (8-16 years old) from three schools in Gerona and Barcelona. The Spanish Kindl was administered twice, one week apart. Internal consistency was assessed by computing Cronbach alpha and test-retest stability was assessed using intraclass correlation coefficients (ICC). Analysis of variance was performed according to age, sex, type of school, and self-perceived health status. RESULTS: Half of the items (12/24) required minor changes during the adaptation process. The response rate was 91 % (n = 447). Internal consistency was acceptable for most domains (alpha range = 0.40-0.88), as was test-retest stability (ICC range = 0.52-0.80). Girls and older teenagers scored worse in most domains (p < 0.01). No differences were found by type of school. CONCLUSIONS: The Spanish version of the Kindl showed adequate reliability and validity coefficients and represents a new HRQL instrument that can be applied in pediatric clinical practice and public health.

Adolescent↗
PubMed2004

Comparison of risk factor profiles concerning self-reported skin complaints and objectively determined skin symptoms in German office workers.

The correspondence between impact factor profiles of self-reported skin sensation and of objectively determined skin symptoms was examined using data from the ProKlimA project (1994-1999). A sub-sample of 925 office workers participated in measurements of skin hydration and sebum content and responded to a questionnaire assessing sensory perception. The calculation of multiple logistic regression models revealed a significant increased risk for female sex [Odds ratio (OR): 2.3; confidence interval (CI): 1.4-3.6], poor software (OR: 2.2; CI: 1.3-4.0), unfavorable job characteristics (OR: 1.8; CI: 1.1-2.8), allergic illness (OR: 1.5; CI: 1.1-2.2) and the use of skin cream (OR:2.6; CI: 1.6-4.4) on the subjective perception of skin sensation. Regarding the objective medical examination of the skin humidity a significant increased risk was detected for a high concentration of Total Volatile Organic Compounds (OR: 2.5; CI: 1.3-4.8) and a low relative humidity (OR:1.9; CI: 1.1-3.4). The likewise objectively measured low sebum content is not associated with environmental variables. The impact profiles on subjective vs. objective outcome variables differ in a clear and typical way. Skin related sensory perception is mainly influenced by job-related and personal impacts. Indoor environmental characteristics affect skin hydration. We conclude the need to develop, to adapt and to use objective clinical methods applicable for field monitoring parallel to questioning.

Adult↗
PubMed2004

Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL).

In spite of an increased interest in the assessment of quality of life (QoL) in children, so far no instrument for children with haemophilia is available. Because of the low prevalence of the condition, such an instrument should also be cross-culturally applicable. In the study presented, a (QoL) assessment instrument for children with haemophilia (the Haemo-QoL questionnaire) was developed and tested in six countries (France, Germany, Italy, the Netherlands, Spain and the United Kingdom) for psychometric properties in 339 children with haemophilia and their parents. The Haemo-QoL is a self-reported questionnaire for children in the age ranges 4-7 (I: 21 items), 8-12 (II: 64 items), 13-16 years (III: 77 items) as well as for parent rating containing 9-11 subscales (depending on age-group versions). Psychometric testing involved the examination of reliability and validity. The three age-group versions of the Haemo-QoL had acceptable internal consistency and retest reliability values, as well as possessing sufficient discriminant and convergent validity. However, in young children when compared to older children, these indicators were less satisfactory. The Haemo-QoL full version is now available for children of three age groups and their parents and is ready for use in clinical research.

Adolescent↗
PubMed2004

Health status and health-related quality of life of children with haemophilia from six West European countries.

A multicentre, international, cross-sectional study was carried out in the frame of field testing of the first haemophilia-specific quality-of-life (QoL) questionnaire (Haemo-QoL). The aim of this paper is to describe health status and health care and their impact on QoL in haemophilic children in Western Europe. Children aged 4-16 years with severe haemophilia without inhibitors were enrolled by 20 centres in France, Germany, Italy, the Netherlands, Spain and the United Kingdom. Clinical information was collected by the physicians with a medical documentation form. Health-related QoL (HRQoL) of children was assessed with Haemo-QoL, available for three age groups. Clinical data were available in 318 patients, 85.5% with haemophilia A. The mean age at first bleeding was 11 months, at first joint bleed 25 months. Functional joint impairments were found in 11.3%. Prophylaxis treatment was given to 66.7% of children in whom breakthrough bleeds occurred 0.4 times a month compared to 1.1 bleeds in children receiving on-demand treatment. A significantly higher factor consumption was found only in the two younger age groups of prophylaxis patients compared to on-demand patients. HRQoL was satisfactory in this cohort: young children were impaired mainly in the dimension 'family' and 'treatment', whereas older children had higher impairments in the so-called 'social' dimensions, such as 'perceived support' and 'friends'. Health care of children in Western Europe is progressively improving with a large diffusion of home treatment and prophylaxis. This provides a high level of health status and HRQoL, being better in haemophilic adolescents on prophylaxis.

Adolescent↗
PubMed2003

[Investigation of the health-related quality of life after a dorso ventral stabilization of the thoracolumbar junction].

OBJECTIVE: Combined dorsoventral stabilization provides superior mechanical stability in the operative treatment of thoracolumbar spine fractures. Currently, there are no data available reflecting the quality of life in trauma patients following the combined procedure. The aim of this investigation was to study the health-related quality of life after dorsoventral stabilization of the thoracolumbar junction using the SF-36 Health Survey. METHODS: In order to assess the quality of life, 30 patients from a consecutive series with unstable fractures of the thoracolumbar junction were investigated in a clinical study. After posterior stabilization with an internal fixator (USS, Synthes),anterior arthrodesis was performed subsequently by autogenous iliac bone grafting in combination with osteosynthesis (MACS, Aesculap; VentroFix, Synthes). The quality of life was investigated 2 years after surgery. Additionally, plain X-rays were obtained and the degree of kyphotic deformation was measured. RESULTS: The evaluation of the data obtained from the SF-36 revealed a reduced quality of life, especially regarding the "physical functioning index", the "bodily pain index", and the "emotional functioning index". Of the patients, 42% still suffered from moderate to severe pain. Measurement of the Cobb angle showed a slight loss of correction without occurrence of a relevant kyphotic deformity. Our statistical analyses did not show any correlation between the data obtained from the SF-36 and the clinical results. Especially there was no correlation between the "bodily pain index" and the Cobb angle ( r=0.112, Spearman's rank order correlation). CONCLUSION: The patients studied here showed a reduced quality of life 2 years after dorsoventral stabilization of the thoracolumbar junction predominantly resulting in long-term pain symptoms. As these findings could not be related to the radiological results (i.e., the occurrence of a kyphotic deformation), other factors such as injury of the motion segment of the spine and the major surgical procedure have to be considered as the main reasons for the reduced quality of life. In summary, it can be concluded that the SF-36 is a suitable tool for the investigation of the postoperative outcome following dorsoventral stabilization of the thoracolumbar junction in trauma patients.

Adolescent↗
PubMed2003

Coping with chronic disease from the perspective of children and adolescents--a conceptual framework and its implications for participation.

In medical and health psychology, efforts have increasingly been made to assess coping of children and adolescents with chronic conditions. In contrast to the study of coping in adults, approaches to define and assess adaptational processes in children pose a number of problems because coping and development are inherently connected with each other. Issues arising when applying theoretical concepts from developmental psychology to the area of coping in children and adolescents are highlighted. The most prominent approaches to conceptualize and assess coping with chronic disease in childhood and adolescence are illustrated. In future research, there is a need to focus the situational context and content of coping rather than to assess the effort employed and level of a particular coping strategy. Coping is not only a way of regulating emotions, but has an interpersonal meaning, depending on its interactional context. In the medical field, coping has a mediating function for participation and shared medical decision-making in health care processes.

Adaptation, Psychological↗
PubMed2003

[SF-36 Health Survey in Rehabilitation Research. Findings from the North German Network for Rehabilitation Research, NVRF, within the rehabilitation research funding program].

The SF-36 Health Survey and its 12-item abridged form is an instrument for the assessment of health related quality of life that can be used with healthy persons and patient populations. Its use has been recommended within a large German multicentre rehabilitation research programme. The paper examines missing data across all five study projects of the North German Network for Rehabilitation Research (NVRF) as well as psychometric properties of the instrument. In addition, data were compared to representative norm data using the SF-36 (SF-12) in the German National Health Survey. Results showed that there were few missing data in the SF-36. Examining the impact of age, gender and health status yielded effects of higher age and female gender on missing data. Psychometric analyses showed good to excellent results of the instrument in terms of scale fit and reliability. In terms of convergent validity, medium to high correlation of the SF-36 subscales with comparable instruments (e. g. SCL-90-R) could be found. Summarizing, the SF-36/SF-12 can be recommended for use in rehabilitation research. Analyses regarding sensitivity should be conducted in future studies.

Activities of Daily Living↗
PubMed2002

Pilot testing of the 'Haemo-QoL' quality of life questionnaire for haemophiliac children in six European countries.

In a multinational working group, an instrument (Haemo-QoL) to assess quality of life in children/adolescents with haemophilia and their parents has been developed. In co-operation with haemophilia treatment centres in six European countries, approximately 10 children/adolescents with haemophilia per country and their parents were asked to participate in the pilot-testing. Both self-reported and parent-reported questionnaires were provided for two age-groups of children (4-16 years). Medical data was collected from physicians from patient files. Answers to open questions from participants (58 children and 57 parents) confirmed the content of 116 of the preliminary items. Cognitive debriefing revealed that the majority of the Haemo-QoL was rated favourably, but 29 questions were recommended to be omitted and several items to be reformulated. Preliminary psychometric testing of the revised 77 item questionnaire in the same sample showed acceptable reliability and validity, which will be examined in a subsequent study with a larger patient sample.

Adolescent↗
PubMed2002

Expert consensus in the development of a European health-related quality of life measure for children and adolescents: a Delphi study.

AIM: To determine the level of consensus among experts regarding content, structure and sources of content for a new European measure of health-related quality of life in children and adolescents. METHODS: A three-round Delphi questionnaire was sent by e-mail to 24 experts in quality of life measurement in 9 European countries. Consensus was considered reached when > 90% of experts either agreed or disagreed with a given statement, or where median scores were over 6 on a scale of 1-10, and score dispersion was within predefined limits. RESULTS: Completed questionnaires were received from 20 panellists in each round. It was agreed that the new instrument should be a multidimensional, profile measure with 30-49 items covering 5-8 dimensions, which should take no more than 10-15 min to complete. Agreement was also reached on 8 specific dimensions to include in the questionnaire (psychological well-being, self-esteem, body image, cognitive functioning, mobility, energy/vitality, social relations, family/home function). Consensus was against the use of individualized questionnaires. Focus groups with children, parents and workers in the field, literature and instrument reviews were considered appropriate sources for content. CONCLUSION: Using a Delphi method in this way for the first time showed it to be a feasible and useful method for establishing a conceptual and operational framework for the Kidscreen questionnaire.

Adolescent↗
PubMed2002

Quality of life after multiple trauma. Aim and scope of the conference.

From September 29 until October 2, 1999, a group of international experts met in Wermelskirchen, Germany, for a consensus conference on "Quality of Life after Multiple Trauma". The meeting was initiated and sponsored by the German Ministry of Education and Research. It was the aim of the group to develop evidence-based guidelines for the systematic evaluation and application of Quality of Life (QoL) measures in patients with severe trauma. The present paper describes the format of the meeting, the selection of the participants, the time schedule, and the proceeding, in order to facilitate the interpretation of the results. The work was structured according to the different types of injury: traumatic brain injury (TBI), multiple injuries without TBI, spinal cord injury, and children with TBI. For each injury group, a specific task force group with 9-13 members was established, consisting of methodologists as well as clinicians from different disciplines. The conference was organised as an alternate sequence of plenary sessions and small working group meetings. The work itself was structured according to the following five questions which have been agreed on and distributed to the participants in advance: 1. What is the major problem (ranking) of the patient at different time points after the accident? 2. Which domains of QoL are affected in the sequelae of trauma? 3. Which instruments are useful to evaluate QoL in trauma patients? 4. Which studies have assessed QoL aspects with which instruments? 5. What instruments should be used in which patient group at what time? The moderators of each task force group summarised the respective results and tried to give recommendations for future application of QoL assessment in trauma patients. As far as possible, the statements should be based on the existing evidence. Furthermore, the groups should recommend QoL measures for use across different patient groups and time points.

Advisory Committees↗
PubMed2002

Quality of life in patients with traumatic brain injury-basic issues, assessment and recommendations.

INTRODUCTION: Traumatic brain injuries (TBI) are one of the most common consequences of traffic accidents. Patients with mild, moderate or severe brain injuries suffer from physical, cognitive, behavioral, emotional and social problems. Most of these problems have been a long standing focus amongst practitioners and researchers. Only recently a development has started that took interest in the quality of life outcome of TBI patients. The international members of this consensus meeting reviewed the literature on Quality of Life assessment after TBI and discussed the applicability of different measurements to this specific patient group. TIME POINTS: During the acute phase (T1; < 3 month after trauma) QoL it is difficult to assess due to the reduced consciousness of TBI patients. In the phase of rehabilitation (T2; < one year after trauma) and in the post-rehabilitation phase (T3) repeated assessment of QoL is recommended. INSTRUMENTS: Several generic and disease-specific instruments possibly relevant to TBI patients or specifically developed for this group were assessed according to the existing evidence in the literature. Criteria for the evaluation of these instruments were: feasibility, specificity, validity, comprehensiveness, international availability, existence of norms, and psychometric quality. The cognitive impairment and the existential dimension were not sufficiently considered in most of the reviewed instruments. GROUP CONSENSUS: The family's and relatives' view of the patient's QoL should not be used as a proxy but provides an additional source of information in the acute phase. At T2 and T3, assessment of the patient's quality of life should include a generic as well as a disease specific instrument. Among the generic instruments the SF-36, the EuroQol and the WHO-QoL should be considered. The literature about specific instruments for patients with TBI like the EBIC is scarce. Therefore, the group could hardly give an empirically based recommendation. The need for further investigation on QoL instruments in TBI patients is strongly emphasized.

Brain Injuries↗