Feasibility and acceptance of electronic quality of life assessment in general practice: an implementation study

Background Patients' health related quality of life (HRQoL) has rarely been systematically monitored in general practice. Electronic tools and practice training might facilitate the routine application of HRQoL questionnaires. Thorough piloting of innovative procedures is strongly recommended before the conduction of large-scale studies. Therefore, we aimed to assess i) the feasibility and acceptance of HRQoL assessment using tablet computers in general practice, ii) the perceived practical utility of HRQoL results and iii) to identify possible barriers hindering wider application of this approach. Methods Two HRQoL questionnaires (St. George's Respiratory Questionnaire SGRQ and EORTC QLQ-C30) were electronically presented on portable tablet computers. Wireless network (WLAN) integration into practice computer systems of 14 German general practices with varying infrastructure allowed automatic data exchange and the generation of a printout or a PDF file. General practitioners (GPs) and practice assistants were trained in a 1-hour course, after which they could invite patients with chronic diseases to fill in the electronic questionnaire during their waiting time. We surveyed patients, practice assistants and GPs regarding their acceptance of this tool in semi-structured telephone interviews. The number of assessments, HRQoL results and interview responses were analysed using quantitative and qualitative methods. Results Over the course of 1 year, 523 patients filled in the electronic questionnaires (1–5 times; 664 total assessments). On average, results showed specific HRQoL impairments, e.g. with respect to fatigue, pain and sleep disturbances. The number of electronic assessments varied substantially between practices. A total of 280 patients, 27 practice assistants and 17 GPs participated in the telephone interviews. Almost all GPs (16/17 = 94%; 95% CI = 73–99%), most practice assistants (19/27 = 70%; 95% CI = 50–86%) and the majority of patients (240/280 = 86%; 95% CI = 82–91%) indicated that they would welcome the use of electronic HRQoL questionnaires in the future. GPs mentioned availability of local health services (e.g. supportive, physiotherapy) (mean: 9.4 ± 1.0 SD; scale: 1 – 10), sufficient extra time (8.9 ± 1.5) and easy interpretation of HRQoL results (8.6 ± 1.6) as the most important prerequisites for their use. They believed HRQoL assessment facilitated both communication and follow up of patients' conditions. Practice assistants emphasised that this process demonstrated an extra commitment to patient centred care; patients viewed it as a tool, which contributed to the physicians' understanding of their personal condition and circumstances. Conclusion This pilot study indicates that electronic HRQoL assessment is technically feasible in general practices. It can provide clinically significant information, which can either be used in the consultation for routine care, or for research purposes. While GPs, practice assistants and patients were generally positive about the electronic procedure, several barriers (e.g. practices' lack of time and routine in HRQoL assessment) need to be overcome to enable broader application of electronic questionnaires in every day medical practice.

Patients with oral tumors. Part 2: Quality of life after treatment with resection prostheses. Resection prosthetics: evaluation of quality of life

In the present study, the oral health-related quality of life of 18 patients (13 men and 5 women) was evaluated using validated questionnaires as proposed by the European Organization of Research and Treatment of Cancer (EORTC). The patients belonged to a cohort of 48 patients, whose prosthetic treatment was performed during the years 2004-2007. In the course of tumor resection, 12 patients underwent graft surgery and 14 patients radiotherapy. One patient required a nasal epithesis since resection of the nose became necessary. Five patients underwent a full block resection of the mandible, and tumor resection in 3 patients resulted in a large oronasal communication. Prosthetic rehabilitation was performed in all patients, and the follow-up period with regular care covered a minimum of 3 years. Eleven patients received dental implants for better support and retention of the prostheses. In spite of compromised oral conditions, functional restrictions, and some difficulties with the prostheses, the answers to the questionnaire were quite positive. The majority judged their general health as good or even excellent. The subjective perception of the patients may contradict the objective view by the dentist. In fact, the individual patient's history and experience provide a better understanding of the impact of oral tumors on daily life. The overall assessment identified 4 items that were perceived as major problems by all patients: swallowing solid food, dry mouth, limited mouth opening, and appearance. Prosthetic rehabilitation has only a limited influence on such problems.

Quality of feedback to e-mail requests - an explorative study in alpine tourism destinations

The central aim of our project is to explore the handling of e-mail request from customers by tourist organisations and to explain the perceived behaviour. For this purpose, we designed a qualitative empirical study which consists basically of two stages. The first stage consists of a black-box test where we employ the setting of a qualitative experiment to measure the behaviour of the organisation to an e-mail request. The second stage comprises a with-box test where we want to look into the tourist organizations and analyse the relevant information processes. This study should give as some insight in the internal processing of e-mail requests and thus should help to explain the reactions that we registered.

Social skills as predictors of communication, performance and quality of collaboration in project-based learning

The assumption that social skills are necessary ingredients of collaborative learning is well established but rarely empirically tested. In addition, most theories on collaborative learning focus on social skills only at the personal level, while the social skill configurations within a learning group might be of equal importance. Using the integrative framework, this study investigates which social skills at the personal level and at the group level are predictive of task-related e-mail communication, satisfaction with performance and perceived quality of collaboration. Data collection took place in a technology-enhanced long-term project-based learning setting for pre-service teachers. For data collection, two questionnaires were used, one at the beginning and one at the end of the learning cycle which lasted 3 months. During the project phase, the e-mail communication between group members was captured as well. The investigation of 60 project groups (N = 155 for the questionnaires; group size: two or three students) and 33 groups for the e-mail communication (N = 83) revealed that personal social skills played only a minor role compared to group level configurations of social skills in predicting satisfaction with performance, perceived quality of collaboration and communication behaviour. Members from groups that showed a high and/or homogeneous configuration of specific social skills (e.g., cooperation/compromising, leadership) usually were more satisfied and saw their group as more efficient than members from groups with a low and/or heterogeneous configuration of skills.

Adult parent-child relationships: Relationship quality, support, and reciprocity

In accordance with Bengtson's model of intergenerational solidarity (e.g. Bengtson & Roberts, 1991), the interrelations between adult daughters' family values, their perception of the relationship quality with their parents, the support they reported to give to and to receive from their parents, and their perception of reciprocity in intergenerational support exchange were investigated for N = 265 middle-aged women in Germany. It was also asked whether the support given to parents and perceived reciprocity are related to daughters' felt burden as a result of their support. Cross-sectional, self-report data were examined with multiple and multinomial logistic regression analyses. The analyses revealed positive relations between family values, relationship quality, and support to parents. Perceived reciprocity was associated with the exchange of intergenerational support and imbalance in support had negative effects on the relationship quality. Felt burden was predicted by the extent of support and the perceived reciprocity. However, specific correlational patterns depending on the kind of support as well as differences in the importance of mother and father occurred. The findings are discussed against the background of the meaning of family obligations and reciprocity in a Western culture.

Patterns and Correlates of Expressed Emotion, Perceived Criticism, and Rearing Style in First Admitted Early-Onset Schizophrenia Spectrum Disorders

The aim of this study was to assess patterns and correlates of family variables in 31 adolescents treated for their first episode of a schizophrenia spectrum disorder (early-onset schizophrenia [EOS]). Expressed emotion, perceived criticism, and rearing style were assessed. Potential correlates were patient psychopathology, premorbid adjustment, illness duration, quality of life (QoL), sociodemographic variables, patient and caregiver "illness concept," and caregiver personality traits and support. Families were rated as critical more frequently by patients than raters (55% vs. 13%). Perceived criticism was associated with worse QoL in relationship with parents and peers. An adverse rearing style was associated with a negative illness concept in patients, particularly with less trust in their physician. Future research should examine perceived criticism as a predictor of relapse and indicator of adolescents with EOS who need extended support and treatment. Rearing style should be carefully observed because of its link with patients' illness concept and, potentially, to service engagement and medication adherence

Health-related quality of life in European women following myocardial infarction: A cross-sectional study

Background:Coronary heart disease is a major contributor to women's health problems.Design:Self-perceived social support, well-being and health-related quality of life (HRQL) were documented in the cross-sectional HeartQoL survey of European women one and six months after a myocardial infarction.Methods:European women were recruited in 18 European countries and grouped into four geographical regions (Southern Europe, Northern Europe, Western Europe and Eastern Europe). Continuous socio-demographic variables and categorical variables were compared by age and region with ANOVA and χ(2), respectively; multiple regression models were used to identify predictors of social support, well-being and HRQL.Results:Women living in the Eastern European region rated social support, well-being and HRQL significantly lower than women in the other regions. Older women had lower physical HRQL scores than younger women. Eastern European women rated social support, well-being and HRQL significantly lower than women in the other regions. Prediction of the dependent variables (social support, well-being and HRQL) by socio-demographic factors varied by total group, in the older age group, and by region; body mass index and managerial responsibility were the most consistent significant predictors.

Effects of short- and long-term variations in RLS severity on perceived health status - the COR-study.

In a cohort study among 2751 members (71.5% females) of the German and Swiss RLS patient organizations changes in restless legs syndrome (RLS) severity over time was assessed and the impact on quality of life, sleep quality and depressive symptoms was analysed. A standard set of scales (RLS severity scale IRLS, SF-36, Pittsburgh Sleep Quality Index and the Centre for Epidemiologic Studies Depression Scale) in mailed questionnaires was repeatedly used to assess RLS severity and health status over time and a 7-day diary once to assess short-term variations. A clinically relevant change of the RLS severity was defined by a change of at least 5 points on the IRLS scale. During 36 months follow-up minimal improvement of RLS severity between assessments was observed. Men consistently reported higher severity scores. RLS severity increased with age reaching a plateau in the age group 45-54 years. During 3 years 60.2% of the participants had no relevant (±5 points) change in RLS severity. RLS worsening was significantly related to an increase in depressive symptoms and a decrease in sleep quality and quality of life. The short-term variation showed distinctive circadian patterns with rhythm magnitudes strongly related to RLS severity. The majority of participants had a stable course of severe RLS over three years. An increase in RLS severity was accompanied by a small to moderate negative, a decrease by a small positive influence on quality of life, depressive symptoms and sleep quality.

Evaluation of Video Transmission Energy Consumption and Quality

The widespread use of wireless enabled devices and the increasing capabilities of wireless technologies has promoted multimedia content access and sharing among users. However, the quality perceived by the users still depends on multiple factors such as video characteristics, device capabilities, and link quality. While video characteristics include the video time and spatial complexity as well as the coding complexity, one of the most important device characteristics is the battery lifetime. There is the need to assess how these aspects interact and how they impact the overall user satisfaction. This paper advances previous works by proposing and validating a flexible framework, named EViTEQ, to be applied in real testbeds to satisfy the requirements of performance assessment. EViTEQ is able to measure network interface energy consumption with high precision, while being completely technology independent and assessing the application level quality of experience. The results obtained in the testbed show the relevance of combined multi-criteria measurement approaches, leading to superior end-user satisfaction perception evaluation .

Quality of Life in Swiss Paediatric Inflammatory Bowel Disease Patients: Do Patients and Their Parents Experience Disease in the Same Way?

BACKGROUND AND AIMS Inflammatory bowel diseases (IBDs) may impair quality of life (QoL) in paediatric patients. We aimed to evaluate in a nationwide cohort whether patients experience QoL in a different way when compared with their parents. METHODS Sociodemographic and psychosocial characteristics were prospectively acquired from paediatric patients and their parents included in the Swiss IBD Cohort Study. Disease activity was evaluated by the Paediatric Crohn's Disease Activity Index (PCDAI) and the Paediatric Ulcerative Colitis Activity Index (PUCAI). We assessed QoL using the KIDSCREEN questionnaire. The QoL domains were analysed and compared between children and parents according to type of disease, parents' age, origin, education and marital status. RESULTS We included 110 children and parents (59 Crohn's disease [CD], 45 ulcerative colitis [UC], 6 IBD unclassified [IBDU]). There was no significant difference in QoL between CD and UC/IBDU, whether the disease was active or in remission. Parents perceived overall QoL, as well as 'mood', 'family' and 'friends' domains, lower than the children themselves, independently of their place of birth and education. However, better concordance was found on 'school performance' and 'physical activity' domains. Marital status and age of parents significantly influenced the evaluation of QoL. Mothers and fathers being married or cohabiting perceived significantly lower mood, family and friends domains than their children, whereas mothers living alone had a lower perception of the friends domain; fathers living alone had a lower perception of family and mood subscores. CONCLUSION Parents of Swiss paediatric IBD patients significantly underestimate overall QoL and domains of QoL of their children independently of origin and education.