34 research outputs found
Prototype evaluation of a self-management Internet diary for patients with ulcerative colitis
Lucia Snoei1, Ad van Bodegraven2, Bas Oldenburg3, Theo Stijnen4, Ad A Kaptein11Unit of Psychology, Leiden University Medical Center, Leiden, The Netherlands; 2Department of Gastroenterology, VU University Medical Center, Amsterdam, The Netherlands; 3Department of Gastroenterology, University Medical Center Utrecht, The Netherlands; 4Department of Statistics and Bioinformatics, Leiden University Medical Center, Leiden, The NetherlandsObjective: To evaluate content, navigation, usability, and impact measurability of a prototype Internet-based self-management intervention for patients with ulcerative colitis.Material and methods: Analysis of 52 Internet diaries that were used in a six-month test trial. Analysis was done using an evaluation framework for eHealth applications that incorporates goals from theory and empirical studies on living with chronic illness, the software design industry, and health services research.Results: Content of the diary covered the intended functions of the Internet-based self-management intervention. The evaluation led to several refinement suggestions concerning navigation, usability, and impact measurability of the Internet diary.Conclusion: Psychosocial, medical, and scientific content as well as interface and design are equally important in the development of effective eHealth interventions. Keywords: self-management, Internet diary, ulcerative colitis, eHealth, prototype&nbsp
A Brief Overview on Microbial Communities Associated with Lichens
The investigation of microorganisms from so far unexplored ecological niches has become an exciting subject in recent years. Lichens are ecologically highly adapted and also unique because the physiological integration of organisms provides conditions for persistence under extreme environmental conditions. Lichens are generally considered as symbiosis between fungi and green algae or cyanobacteria. These partnerships give raise to light-exposed and long-living joint structures, and the unique organization of lichens provides still unexplored environments for microbial communities. Recent studies showed that lichens harbour high abundances and diversity of bacteria but their exact location, ecology and biotechnological potential are still unexplored. The present paper summarizes briefly and gives an overview about the most important topics related to the study of the microbial community inhabiting the lichen thalli.Ă‚
Using Plain Language and Adding Communication Technology to an Existing Health-Related Questionnaire to Help Generate Accurate Information: Qualitative Study
Background: Low-educated patients are disadvantaged in using questionnaires within the health care setting because most health-related questionnaires do not take the educational background of patients into account. The Dutch Talking Touch Screen Questionnaire (DTTSQ) was developed in an attempt to meet the needs of low-educated patients by using plain language and adding communication technology to an existing paper-based questionnaire. For physical therapists to use the DTTSQ as part of their intake procedure, it needs to generate accurate information from all of their patients, independent of educational level. Objective: The aim of this study was to get a first impression of the information that is generated by the DTTSQ. To achieve this goal, response processes of physical therapy patients with diverse levels of education were analyzed. Methods: The qualitative Three-Step Test-Interview method was used to collect observational data on actual response behavior of 24 physical therapy patients with diverse levels of education. The interviews included both think-aloud and retrospective probing techniques. Results: Of the 24 respondents, 20 encountered one or more problems during their response process. The use of plain language and information and communication technology (ICT) appeared to have a positive effect on the comprehensibility of the DTTSQ. However, it also had some negative effects on the interpretation, retrieval, judgment, and response selection within the response processes of the participants in this study. No educational group in this research population stood out from the rest in the kind or number of problems that arose. All respondents recognized themselves in the outcomes of the questionnaire. Conclusions: The use of plain language and ICT within the DTTSQ had both positive and negative effects on the response processes of its target population. The results of this study emphasize the importance of earlier recommendations to accompany any adaption of any questionnaire to a new mode of delivery by demonstrating the difference and equivalence between the two different modes and to scientifically evaluate the applicability of the newly developed mode of the questionnaire in its intended setting. This is especially important in a digital era in which the use of plain language within health care is increasingly being advocated
Sexuality in patients with asthma and COPD
SummarySexual quality of life was examined in 55 outpatients with chronic obstructive pulmonary disease (COPD) and asthma, using disease-specific questionnaires. Compared to an age- and sex-matched norm group, male patients with COPD reported a significantly lower sexual quality of life on all dimensions of the questionnaire. Female patients with COPD reported a lower frequency of sexual intimacy and lower sexual quality of life overall. Patients with asthma reported sexual quality-of-life scores that were somewhat better than COPD patients but worse than the healthy control group. Patients reported that they did not discuss sexual quality-of-life issues with their physician. Sexuality needs to be discussed by the health care provider in the consultation in order to improve quality of life of patients with chronic respiratory disorders
Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions
Research suggests that chronically ill patients and their partners perceive illness differently, and that these differences have a negative impact on patients’ quality of life (QoL). This study assessed whether illness perceptions of patients with Huntington’s disease (HD) differ from those of their partners, and examined whether spousal illness perceptions are important for the QoL of the couples (n = 51 couples). Partners reported that their HD-patient spouses suffered more symptoms and experienced less control than the patients themselves reported. Illness perceptions of patients and partners correlated significantly with patient QoL. Partners’ beliefs in a long duration of the patients’ illness and less belief in cure, were associated with patient vitality scores. Suggestions for future research emphasize the importance of qualitative research approaches in combination with cognitive-behavioural approaches