From the publisher's website: Large groups in society, in particular people with low literacy, lack the necessary proactivity and problem-solving skills to be self-reliant. One omnipresent problem area where these skills are relevant regards filling in forms and questionnaires. These problems could be potentially alleviated by taking advantage of the possibilities of information and communication technology (ICT), for example by offering alternatives to text, interactive self-explaining scales and easily accessible background information on the questionnaires’ rationale. The goal of this paper was to present explorative design guidelines for developing interactive questionnaires for low-literate persons. The guidelines have been derived during a user-centered design process of the Dutch Talking Touch Screen Questionnaire (DTTSQ), an interactive health assessment questionnaire used in physical therapy. The DTTSQ was developed to support patients with low health literacy, meaning they have problems with seeking, understanding and using health information. A decent number of guidelines have been derived and presented according to an existing, comprehensive model. Also, lessons learned were derived from including low-literate persons in the user-centered design process. The guidelines should be made available to ICT developers and, when applied properly, will contribute to the advancement of (health) literacy and empower citizens to fully participate in society
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The traditional paternalistic approach in health care is increasingly developing towards a patient-centered care (PCC) approach. However, not all patients are able to take advantage of the positive effects of PCC. Inadequate health literacy (HL) is an important limiting factor in the ability of patients to take on an active role and exchange information with their health care provider effectively. A provenly effective approach to improvement of provider-patient interaction and health outcomes is the use of health-related questionnaires. The aim of the research project described within this thesis was to adapt the most frequently-used questionnaire in Dutch physical therapy practice and add information and communication technology to it. A Dutch and Turkish version of the tool called Talking Touch Screen Questionnaire (TTSQ) was developed and evaluated on both usability and validity aspects. The current prototype of the tool does not yet fully solve the problems native and minority patients with low (health) literacy have with completing the adapted questionnaire. Big challenges in future development and testing the TTSQ are the recruitment of vulnerable members of the hard-to-reach native and minority target populations and finding research methods that suit the abilities and needs of these participants. This is expected to be a very challenging, labor- and time-consuming process. On the other hand, having a usable, valid and reliable TTSQ may well save a lot of time and money in both research and clinical practice in the future.
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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.
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Background: The increase in life expectancy has brought about a higher prevalence of chronic illnesses among older people. Objectives: To identify common chronic illnesses among older adults, to examine the influence of such conditions on their Health-Related Quality of Life (HRQoL), and to determine factors predicting their HRQoL. Method: A population-based cross-sectional study was conducted involving 377 individuals aged 60 years and above who were selected using multi-stage sampling techniques in Olorunda Local Government, Osun State, Nigeria. Data were collected using an interviewer-administered questionnaire comprising socio-demographic characteristics, chronic illnesses, and the World Health Organization quality of life instrument (WHOQOL-BREF) containing physical health, psychological, social relationships, and environmental domains. Results: About half (51.5%) of the respondents reported at least one chronic illness which has lasted for 1–5 years (43.3%). The prevalence of hypertension was 36.1%, diabetes 13.9% and arthritis 13.4%. Respondents with chronic illness had significantly lower HRQoL overall and in the physical health, social relationships and the environmental domains (all p<0.05) compared to those without a chronic illness. Factors that predicted HRQoL include age, marital status, level of education, the presence of chronic illness and prognosis of the condition. Conclusion: This study concluded that chronic illness is prevalent in Nigerian older people and significantly influence their HRQoL. Age, marital status, and level of education were associated with HRQoL in this group.
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The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4–18 years, with Marfan syndrome (MFS, n = 74), Loeys–Dietz syndrome (n = 8), molecular confirmed Ehlers–Danlos syndromes (n = 15), and hypermobile Ehlers–Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p < 0.001, d = 0.9) and Psychosocial sum scores (p = 0.024, d = 0.2), indicating decreased HRQoL. Similar findings were obtained for child-reported HRQoL. The parent-reported mental health of the HCTD-group showed significantly increased Total difficulties sum scores (p = 0.01, d = 0.3), indicating decreased mental health. While the male and female MFS- and hEDS-subgroups both reported decreased HRQoL, only the hEDS-subgroup reported decreased mental health. In conclusion, children and adolescents with HCTD report decreased HRQoL and mental health, with most adverse outcomes reported in children with hEDS and least in those with MFS. These findings call for systematic monitoring and tailored interventions.
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Surviving a burn can dramatically alter a child’s life, yet few studies examined long-term health-related quality of life (HRQL). This study assessed HRQL 5–7 years post-burn in children with mild/intermediate and severe burns and identified associated factors. Parents of children (5− < 18 years) who were hospitalized or had burn surgery between 08/2011 and 09/2012 completed the Burn Outcomes Questionnaire (BOQ). Outcomes were compared between two subgroups: children with mild/intermediate burns (10% (TBSA) burned; (2) aged ≥10 years with >20% TBSA burned; or (3) >5% full-thickness burns). A total of 102 children were included (mean age at survey: 8.4 (3.0) years; mean former TBSA: 7.1%). At a mean of 5.7 years post-burn, many parents rated their child’s health as excellent (46.1%) or very good (35.3%), with few reporting issues with ‘pain’ (2.3%), ‘physical function and sports’ (1.6%), and ‘upper extremity function’ (0.9%). Parents of children with severe burns indicated significantly more problems with ‘appearance’ (89.2% versus 71.5%; p = 0.014) and ‘parental concern’ (94.1% versus 84.8%; p = 0.021). Upper limb burns, facial burns, burn size, length of hospital stay, full-thickness burns, and the number of surgeries predicted poorer outcomes. In general, these findings indicate positive long-term HRQL, though especially children with full-thickness burns and/or surgical interventions face a higher risk of reduced HRQL. The results can be used to inform children and their families about the long-term implications. Furthermore, healthcare professionals can use these insights to identify children at higher risk of poorer long-term HRQL.
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Background: Anemia is a serious and highly prevalent co-morbidity in chronic heart failure (HF) patients. Its influence on health-related quality of life (HR-QoL) has rarely been studied, and no data is available regarding the role it plays in hospitalized HF patients. Methods: Baseline data from the COACH study (Coordinating study evaluating Outcomes of Advising and Counselling in Heart Failure) were used. HR-QoL was assessed by means of generic and disease-specific questionnaires. Analyses were performed using ANOVA and ANCOVA, with covariates of age, gender, eGFR, diabetes, and NYHA class. Results: In total, 1013 hospitalized patients with a mean age of 71 (SD 11) years were included; 70% of these patients had no anemia (n = 712), 14% had mild anemia (n = 141), and 16% had moderate-to-severe anemia (n = 160). Independent associations were found between anemia and physical functioning (p = 0.019), anemia and role limitations due to physical functioning (p = 0.002), anemia and general health (p = 0.024), and anemia and global well-being (p = 0.003). Conclusion: In addition to the burden of HF itself, anemia is an important factor which influences HR-QoL in hospitalized HF patients, and one that is most pronounced in the domain related to physical functioning and general health. © 2012 Elsevier Ireland Ltd.
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Background: The built environment is increasingly recognized as a determinant for health and health behaviors. Existing evidence regarding the relationship between environment and health (behaviors) is varying in significance and magnitude, and more high-quality longitudinal studies are needed. The aim of this study was to evaluate the effects of a major urban redesign project on physical activity (PA), sedentary behavior (SB), active transport (AT), health-related quality of life (HRQOL), social activities (SA) and meaningfulness, at 29–39 months after opening of the reconstructed area. Methods: PA and AT were measured using accelerometers and GPS loggers. HRQOL and sociodemographic characteristics were assessed using questionnaires. In total, 241 participants provided valid data at baseline and follow-up. We distinguished three groups, based on proximity to the intervention area: maximal exposure group, minimal exposure group and no exposure group. Results: Both the maximal and minimal exposure groups showed significantly different trends regarding transportbased PA levels compared to the no exposure group. In the exposure groups SB decreased, while it increased in the no exposure group. Also, transport-based light intensity PA remained stable in the exposure groups, while it significantly decreased in the no exposure group. No intervention effects were found for total daily PA levels. Scores on SA and meaningfulness increased in the maximal exposure group and decreased in the minimal and no exposure group, but changes were not statistically significant. Conclusion: The results of this study emphasize the potential of the built environment in changing SB and highlights the relevance of longer-term follow-up measurements to explore the full potential of urban redesign projects.
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BACKGROUND: Covid-19 has had a major negative impact on children's engagement in health-related behaviors. This study examines trends in children's screen time, outdoor play and sports club membership in pre- (2016-19), mid- (2020-21) and post- (2021-22) Covid years. Also, predicting factors (gender, age and active commuting) of these health-related behaviors are examined.METHODS: Data were collected via yearly self-report questionnaires among pupils in Grades 3-6 (mean age 10.14 ± 1.25 years; total n over the five cohorts = 6351, 50.8% girls). Multilevel path models were constructed in Mplus to examine whether children's screen time, outdoor play and sports club membership differed between pre-, mid- and post-Covid years; and which factors predicted engagement in these health-related behaviors (using data of all cohorts).RESULTS: During and after Covid-19, children's screen time was higher, while they engaged less in outdoor play and were less often member of a sports club than before. Although these negative trends peaked during Covid-19, they slowly seem to be returning to pre-Covid levels in recent year. Younger children, girls and active commuters had less minutes screen time per day and played outdoors more days per week; boys and active commuters were more often sports club member.CONCLUSIONS: Although in the first year post-Covid children seem to be engaging more in health-related behaviors than during Covid-19, we still found lower levels of engagement than in the years before Covid-19, underlining the importance of early intervention to ensure an appropriate amount of engagement in health-related behaviors for all children.
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Identifying factors that predict health-related quality of life (QOL) following hematopoietic SCT, is important in estimating patients’ abilities to adjust to the consequences of their disease and treatment. As the studies that have been published on this subject are scattered, the present study aimed to systematically review prognostic factors for health-related QOL after auto- and allo-SCT in hematological malignancies. A systematic, computerized search in Medline, EMBASE, PsycINFO and the Cochrane Library was conducted from 2002 to June 2010. The methodological quality of the studies was assessed using an adaptation of Hayden's criteria list. Qualitative data synthesis was performed to determine the strength of the scientific evidence. In all, 35 studies fulfilled the selection criteria. Strong–moderate evidence was found for GVHD, conditioning regimen, being female, younger age, receiving less social support and pre-transplant psychological distress as predictors of various aspects of health-related QOL following hematopoietic SCT. The results of this review may help transplant teams in selecting patients at risk for experiencing a diminished health-related QOL following hematopoietic SCT. Follow-up treatment can be provided in order to promote QOL.
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