Measuring context that matters: validation of the modular Tele-QoL patient-reported outcome and experience measure.

PURPOSE: A setting-sensitive instrument for assessing Quality of Life (QoL) in Telemedicine (TM) was unavailable. To close this gap, a content-valid "add-on" measure was developed. In parallel, a brief index was derived featuring six items that summarise the main content of the multidimensional assessment. After pre- and pilot-testing, the psychometric performance of the final measures was investigated in an independent validation study. METHODS: The questionnaires were applied along with other standardised instruments of similar concepts as well as associated, yet disparate concepts for validation purposes. The sample consisted of patients with depression or heart failure, with or without TM (n = 200). Data analyses were aimed at calculating descriptive statistics and testing the psychometric performance on item, scale, and instrument level, including different types of validity and reliability. RESULTS: The proposed factor structure of the multidimensional Tele-QoL measure has been confirmed. Reliability coefficients for internal consistency, split-half, and test-retest reliability of the subscales and index reached sufficient values. The Tele-QoL subscales and the index demonstrated Rasch scalability. Validity of both instruments can be assumed. Evidence for discriminant construct validity was provided. Known-groups validity was indicated by respective score differences for various classes of disease severity. CONCLUSION: Both measures show convincing psychometric properties. The final multidimensional Tele-QoL assessment consists of six outcome scales and two impact scales assessing (un-)intended effects of TM on QoL. In addition, the Tele-QoL index provides a short alternative for outcome assessment. The Tele-QoL measures can be used as complementary modules to existing QoL instruments capturing healthcare-related aspects of QoL from the patients' perspective.

Assessment of Quality of Life in Gestational Diabetes Mellitus Care-Study Protocol of the GDM-QOL Project.

In recent years, the concept of quality of life (QoL) has gained significant importance within health care and clinical research, e.g., as in patient-reported outcomes. In gestational diabetes mellitus (GDM) care, enhancing QoL through reasonable interventions is considered equally important as achieving metabolic control and preventing complications in the treatment process, leading to the suggestion that QoL assessment should be implemented as a clinical standard in GDM care. Although a considerable number of questionnaires for the measurement of general as well as health-related and diabetes-specific QoL are frequently used in GDM research, a validated QoL questionnaire tailored to women with GDM does not exist in German-speaking countries. To develop and test such an instrument, we plan to conduct the following steps: (a) translate the Persian questionnaire GDMQ-36, the only GDM-specific questionnaire to date; (b) conduct expert ratings as well as pretests featuring cognitive debriefings and structured interviews with women suffering from GDM for evaluating comprehensibility, face and content validity; (c) pilot and validate the preliminary questionnaire in terms of testing its psychometric performance (e.g., via confirmatory factor analysis). The resulting GDM-specific questionnaire will facilitate a broader perspective of the pregnant women's expectations, needs, impairments, and burdens related to their disease, and its treatment. This enables physicians and other health professionals to establish an individualized treatment plan and to provide customized information, support, and psychological counseling, which helps to optimize the provided care.

Setting-Sensitive Conceptualization and Assessment of Quality of Life in Telemedical Care-Study Protocol of the Tele-QoL Project.

Quality of life (QoL) is a core patient-reported outcome in healthcare research, alongside primary clinical outcomes. A conceptual, operational, and psychometric elaboration of QoL in the context of TM is needed, because standardized instruments to assess QoL do not sufficiently represent essential aspects of intended outcomes of telemedical applications (TM). The overall aim is to develop an instrument that can adequately capture QoL in TM. For that purpose, an extended working model of QoL will be derived. Subsequently, an instrument will be developed and validated that captures those aspects of QoL that are influenced by TM. The initial exploratory study section includes (a) a systematic literature review, (b) a qualitative survey for concept elicitation, and (c) pre-testings using cognitive debriefings with patients and an expert workshop. The second quantitative section consists of an online expert survey and two patient surveys for piloting and validation of the newly developed instrument. The resulting questionnaire will assess central experiences of patients regarding telemedical applications and its impact on QoL more sensitively. Its use as adjunct instrument will lead to a more appropriate evaluation of TM and contribute to the improvement of care tailored to patients' individual needs.

In the Mood for a Blood Donation? Pilot Study about Momentary Mood, Satisfaction, and Return Behavior in Deferred First-Time Donors.

INTRODUCTION: To maintain a sufficient donor pool, deferred first-time donors (FTD) should be motivated to return for blood donation. This pilot study investigates how deferral affects momentary mood, satisfaction with the donation process, and subsequent return behavior to examine their potential for motivating (deferred) FTD. METHODS: All of the subjects (n = 96) completed a first questionnaire (A1) before pre-donation assessment. Deferred FTD (n = 22) were asked to complete a second questionnaire (A2) immediately after deferral, while non-deferred FTD (n = 74) filled in the second questionnaire (A3) after blood donation. The impact of deferral, momentary mood, and satisfaction with the donation process on return behavior within 12 months was tested by calculating two path analyses, controlling for sex and age. RESULTS: Mood (p < 0.001) and satisfaction with social aspects of the donation process (p = 0.01) were decreased after deferral. Deferred FTD were less likely than non-deferred FTD to return to the blood donation center within 12 months (60.8 vs. 36.4%; p = 0.043). However, path analyses revealed that deferral effects on mood and satisfaction were not connected to return behavior. Instead, age had a significant influence on return behavior (p < 0.05) such that, overall, non-returning FTD were older than returning FTD, regardless of their deferral status. CONCLUSION: Our findings suggest that mood and satisfaction with the donation process are directly affected by deferral but not clearly responsible for low return rates. It seems promising to embed these variables in established health behavior models in further studies to increase the return rates of deferred FTD.

Same same-but different: using qualitative studies to inform concept elicitation for quality of life assessment in telemedical care: a request for an extended working model.

BACKGROUND: Although telemedical applications are increasingly used in the area of both mental and physical illness, there is no quality of life (QoL) instrument that takes into account the specific context of the healthcare setting. Therefore, the aim of this study was to determine a concept of quality of life in telemedical care to inform the development of a setting-sensitive patient-reported outcome measure. METHODS: Overall, 63 semi-structured single interviews and 15 focus groups with 68 participants have been conducted to determine the impact of telemedical care on QoL. Participants were patients with chronic physical or mental illnesses, with or without telemedicine supported healthcare as well as telemedical professionals. Mayring's content analysis approach was used to encode the qualitative data using MAXQDA software. RESULTS: The majority of aspects that influence the QoL of patients dealing with chronic conditions or mental illnesses could be assigned to an established working model of QoL. However, some aspects that were considered important (e. g. perceived safety) were not covered by the pre-existing domains. For that reason, we re-conceptualized the working model of QoL and added a sixth domain, referred to as healthcare-related domain. CONCLUSION: Interviewing patients and healthcare professionals brought forth specific aspects of QoL evolving in telemedical contexts. These results reinforce the assumption that existing QoL measurements lack sensitivity to assess the intended outcomes of telemedical applications. We will address this deficiency by a telemedicine-related re-conceptualization of the assessment of QoL and the development of a suitable add-on instrument based on the resulting category system of this study.

"Blood for Blood"? Personal Motives and Deterrents for Blood Donation in the German Population.

It is crucial to provide updated knowledge about blood (non-)donors, as it is necessary to design targeted interventions with the aim of retaining blood donors and thus contributing to a functioning health system. This study investigates the prevalence and socio-demographic patterning of lifetime blood donation, assessing blood donation intention within the next 12 months and exploring personal motives and deterrents of blood donation qualitatively in the German population. A face-to-face cross-sectional survey with 2531 respondents was conducted, representative of the German population in terms of age, gender, and residency. Closed as well as open questions were asked. Qualitative content analysis was used for coding the qualitative material. Basic descriptive statistics were conducted to address our research questions. More than one-third of the participants reported that they have donated blood at least once in their lifetime. Motives and deterrents were assigned to 10 domains with 50 main categories and 65 sub-categories. The most frequently stated motives for blood donation were "altruism", "social responsibility", and "charity", whereas the most frequently stated deterrents were "health status", "age", and "lack of time". This study provides information to tailor recruitment and reactivation strategies to address donors at different career steps-from non-donor to loyal donor.

Well-being and return rate of first-time whole blood donors.

BACKGROUND AND OBJECTIVES: Previous studies observed a transient increase in well-being in about one-third of regular donors after blood donation. In addition, personal contact with donors after donation seems to increase return rates. We were interested whether changes in well-being and/or personal contact after the first donation impact return rates of first-time donors (FTDs). MATERIALS AND METHODS: First-time donors were randomized to a questionnaire group (QG), in which questionnaires assessing the well-being had to be filled in, or a control group (CG), which was not contacted with a questionnaire. The QG had to complete the same questionnaire three times at the day of the first donation and then four times over an 8-week period with reminding calls by the study coordinator. Return rates of participants were followed for 12 months. RESULTS: A total of 102 FTDs participated in the QG and 115 in the CG. Changes in well-being after the first donation had minimal impact on the return rates. In contrast, contacting FTDs after their first donation had a significant impact on the return rate of male donors (89·2% in the QG vs. 58·3% in the CG; P = 0·001). Females showed no significant difference in return rates between both groups (P = 0·32). CONCLUSION: The well-being of FTDs had no influence on their return rate. The intervention of regular contacts during a research project follow-up resulted in an increased return rate of male but not of female FTDs. The pronounced difference of the impact of this intervention between male and female donors requires further studies.

Supporting health-related parenting: A scoping review of programs assisted by the Internet and related technologies / Apoiando a parentalidade relacionada com a saúde: uma revisão abrangente dos programas assistidos pela Internet e tecnologias relacionadas

Health interventions have been proposed as a possible solution to overcome major obstacles associated with low adherence rates, low accessibility, and high costs of parenting programs. Due to the number and variety of interventions found in the literature, this study aimed to conduct a scoping review of parenting interventions directed at supporting parents in promoting their child's health and carrying out disease-related tasks. The scoping review identified 119 technology-based programs directed both at universal, preventive objectives and at the management and adaptation to chronic or severe acute health conditions. Several different web-based applications have been creatively used in healthrelated parenting interventions. Most programs use evidence-based psychological methodologies to promote parental self-management, build specific parenting skills, and provide customized feedback and social support. Further studies are needed to assess the contribution of the Internet and mobile applications to enhance the effectiveness of health-related parenting interventions and the dissemination of empirically validated programs.

Intervenções de eSaúde foram propostas para superar obstáculos relacionados com baixas taxas de adesão, baixa acessibilidade e custos elevados. Devido à diversidade de intervenções existentes, este estudo objetivou conduzir uma revisão abrangente das intervenções parentais para apoiar os pais nas tarefas relacionadas com a saúde e a doença dos filhos. A revisão abrangente encontrou 119 programas baseados em tecnologia, tanto direcionados para objetivos universais e preventivos, quanto para a gestão e adaptação a condições de saúde graves, crônicas ou agudas. Uma diversidade de aplicações foi utilizada de forma criativa em intervenções parentais. A maioria dos programas utiliza metodologias psicológicas baseadas em evidências para promover a autogestão, treinar habilidades parentais específicas e oferecer feedback personalizado e apoio social. São necessárias mais investigações para avaliar a contribuição da Internet e das aplicações móveis para aumentar a eficácia das intervenções parentais relacionadas com a saúde e a divulgação de programas empiricamente validados.