Purpose The purpose of this research was to explore women’s experiences after breast surgery with scar characteristics and symptoms, and its impact on their health-related quality of life (HRQOL). Material and methods A qualitative study using semi-structured face-to-face interviews was conducted among women following prophylactic, oncologic, or reconstructive breast surgery in the Netherlands. A directed content analysis was performed using guiding themes. Themes were “physical and sensory symptoms,” “impact of scar symptoms,” “personal factors,” “impact of scar interventions,” and “change over time.” Results The study population consisted of 26 women after breast surgery. Women experienced a wide range of symptoms like adherence, stiffness, pain, and uncomfortable sensations. Scar characteristics as visibility, location, texture, and size, influenced satisfaction with their appearance. The impact of scar symptoms is reflected in physical, social, emotional, and cognitive functioning, thereby affecting HRQOL. The experienced impact on HRQOL depended on several factors, like personal factors as the degree of acceptance and environmental factors like social support. Conclusion Women can experience a diversity of scar characteristics and symptoms, which play a central role in the perceived impact on HRQOL. Since scarring can have a considerable impact on HRQOL, scarring after prophylactic, oncologic and reconstructive breast surgery should be given more attention in clinical practice and research. Implications for Cancer Survivors Considering scarring as a common late effect after breast surgery and understanding the variety of experiences, which could impact HRQOL of women, can be beneficial in sufficient information provision, expectation management, and informed decision making.
Summary Background A venous leg ulcer (VLU) has a significant negative impact on quality of life. Prevention of a VLU is not yet imbedded in clinical practice because risk factors for developing a first VLU are not well known. Objectives To explore further the progression of chronic venous disease (CVD) into a first VLU from the patient's perspective. Methods A qualitative study using semistructured interviews was conducted among male and female patients with a VLU. Patients from primary and secondary care, under and over 50 years of age, and with first and recurrent VLUs were included. The interviews were transcribed and analysed using a narrative approach to a thematic analysis. Transcripts were organized in chronological order and an iterative process was used to code the transcripts. Results Four key themes and the connections made between them emerged from the 11 narratives on the progression of CVD towards a first VLU: ‘comorbidity’, ‘mobility’, ‘work and lifestyle’ and ‘acknowledgment of CVD’. Comorbidity was linked to reduced mobility and late acknowledgment of CVD. Comorbidity also affected work and lifestyle and vice versa. Work and lifestyle affected mobility and was linked to the acknowledgment of CVD. Conclusions A reduction in mobility as a result of comorbidity and work and lifestyle occurred before the VLU developed. Patients did not recognize symptoms of CVD and did not acknowledge the chronicity of CVD. Healthcare professionals should be aware of reductions in mobility and the knowledge deficit in patients with CVD. What's already known about this topic? Not all patients with chronic venous disease (CVD) develop a venous leg ulcer (VLU). A patient's quality of life decreases significantly when a VLU develops. Risk factors for the development of a first VLU in patients with CVD are not well known, unlike risk factors for other chronic wounds like diabetic foot ulcer and pressure ulcers. What does this study add? The patient's narrative towards the development of a first VLU, a series of events. Insight into the events (comorbidity, mobility, work and lifestyle) that patients themselves link to the development of a VLU. Insight into the patients’ acknowledgment of CVD in the progression of CVD towards a first VLU. What are the clinical implications of this work? More awareness is needed of CVD symptoms among patients and healthcare providers, as well as more awareness for prevention of a VLU in clinical practice. New insights (for further studies) are needed into the concept of mobility and the development of a VLU. Improved patient education and follow‐up are needed for patients with CVD. Linked Comment: Magin. Br J Dermatol 2020; 183:207–208.
Purpose Our aim was to develop consensus on the definition and operationalization of communicative participation (CP) in 2- to 8-year-old children with language disorders (LDs). A clear definition and operationalization can facilitate the discussion about children's communication problems in daily life between parents and professionals. Method In an online Delphi study, anonymized thoughts and opinions were collected on the definition and operationalization of CP in young children with LD. The 47 Delphi panel members were Dutch parents, young adults with LDs, teachers and assistants, speech-language pathologists, clinical linguists, and clinical researchers. Thematic content analysis was used to develop a concept definition and items operationalizing CP. The Delphi panel rated the suitability of concept definitions using a 7-point Likert scale. Concept definitions were revised with feedback from the Delphi panel until consensus was achieved. The Delphi panel rated items on how well they operationalize CP, using the same Likert scale. Results The majority (79%) of the Delphi panel indicated that the essence of CP was captured by the definition: “CP is understanding and being understood in a social context, by applying verbal and non-verbal communication skills.” In addition, 33 behavioral items were developed. Conclusion This study resulted in strong consensus on the definition of CP between Dutch parents and professionals. Items were developed that can inform speech-language pathologists on the type of questions to ask a child's parents or teacher when discussing CP. Further research is needed on how the items can best be used in clinical practice.
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 usercentered 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 usercentered 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.
BackgroundLow-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.ObjectiveThe 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.MethodsThe 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.ResultsOf 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.ConclusionsThe 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.
BackgroundIn the past years, a mobile health (mHealth) app called the Dutch Talking Touch Screen Questionnaire (DTTSQ) was developed in The Netherlands. The aim of development was to enable Dutch physical therapy patients to autonomously complete a health-related questionnaire regardless of their level of literacy and digital skills.ObjectiveThe aim of this study was to evaluate the usability (defined as the effectiveness, efficiency, and satisfaction) of the prototype of the DTTSQ for Dutch physical therapy patients with diverse levels of experience in using mobile technology.MethodsThe qualitative Three-Step Test-Interview method, including both think-aloud and retrospective probing techniques, was used to gain insight into the usability of the DTTSQ. A total of 24 physical therapy patients were included. The interview data were analyzed using a thematic content analysis approach aimed at analyzing the accuracy and completeness with which participants completed the questionnaire (effectiveness), the time it took the participants to complete the questionnaire (efficiency), and the extent to which the participants were satisfied with the ease of use of the questionnaire (satisfaction). The problems encountered by the participants in this study were given a severity rating that was used to provide a rough estimate of the need for additional usability efforts.ResultsAll participants within this study were very satisfied with the ease of use of the DTTSQ. Overall, 9 participants stated that the usability of the app exceeded their expectations. The group of 4 average-/high-experienced participants encountered only 1 problem in total, whereas the 11 little-experienced participants encountered an average of 2 problems per person and the 9 inexperienced participants an average of 3 problems per person. A total of 13 different kind of problems were found during this study. Of these problems, 4 need to be addressed before the DTTSQ will be released because they have the potential to negatively influence future usage of the tool. The other 9 problems were less likely to influence future usage of the tool substantially.ConclusionsThe usability of the DTTSQ needs to be improved before it can be released. No problems were found with satisfaction or efficiency during the usability test. The effectiveness needs to be improved by (1) making it easier to navigate through screens without the possibility of accidentally skipping one, (2) enabling the possibility to insert an answer by tapping on the text underneath a photograph instead of just touching the photograph itself, and (3) making it easier to correct wrong answers. This study shows the importance of including less skilled participants in a usability study when striving for inclusive design and the importance of measuring not just satisfaction but also efficiency and effectiveness during such studies.
Background Despite the wide range of available treatment modalities a delay between the first outbreak of acne vulgaris and an effective treatment outcome is experienced by many patients. Considering the growing incentives to improve patient satisfaction and quality of care while reducing healthcare costs, insights into the structure, quality and accessibility of acne healthcare services beyond guidelines are therefore needed. Objective To provide insights into the structure, quality and accessibility of acne healthcare services. Methods A qualitative study was conducted according to the principles of 'situational analysis'. The Dutch acne healthcare system was taken as an illustrative example. Twenty-four semi-structured interviews were conducted among representatives of the 4 main Dutch professions providing acne care. All interviews were audiotaped, transcribed verbatim and analysed. Results Multiple facilitators and barriers emerged from the interviews. Identified facilitators were care providers delivering personalized patient care and having a positive attitude towards formalised multidisciplinary care delivery. A lack of streamlined referral pathways and standardisation in acne severity-assessment, financial aspects and unfamiliarity with the content and added value of other acne care professionals were identified as barriers. Further research is recommended to investigate how demedicalisation, the gatekeepers role, and the impact of location and work setting influence the quality of and accessibility to care. Conclusions Identified facilitators and barriers and an overall positive attitude of care providers towards multidisciplinary care provision provides opportunities for the utilisation of future guidelines involving streamlined referral pathways and good working arrangements between all acne care providing professions.
Background The Turkish translation of the Dutch Talking Touch Screen Questionnaire (TTSQ) has been developed to help physical therapy patients with a Turkish background in the Netherlands to autonomously elucidate their health problems and impairments and set treatment goals, regardless of their level of health literacy. Objective The aim of this study was to evaluate the usability of the Turkish TTSQ for physical therapy patients with a Turkish background with diverse levels of health literacy and experience in using mobile technology. Methods The qualitative Three-Step Test-Interview method was carried out to gain insight into the usability of the Turkish TTSQ. A total of 10 physical therapy patients participated. The interview data were analyzed using a thematic content analysis approach aimed at determining the accuracy and completeness with which participants completed the questionnaire (effectiveness), the time it took participants to complete the questionnaire (efficiency), and the extent to which the participants were satisfied with the ease of use of the questionnaire (satisfaction). The problems encountered by the participants in this study were given a severity rating, which was used to provide a rough estimate of the need for additional usability improvements. Results No participant in this study was able to complete the questionnaire without encountering at least one usability problem. A total of 17 different kinds of problems were found. On the basis of their severity score, 3 problems that should be addressed during future development of the tool were “Not using the navigation function of the photo gallery in Question 4 causing the participant to not see all presented response items;” “Touching the text underneath a photo in Question 4 to select an activity instead of touching the photo itself, causing the activity not to be selected;” and “Pushing too hard or tapping too softly on the touch screen causing the touch screen to not respond.” The data on efficiency within this study were not valid and are, therefore, not reported in this study. No participant was completely satisfied or dissatisfied with the overall ease of use of the Turkish TTSQ. Two participants with no prior experience of using tablet computers felt that, regardless of what kinds of improvement might be made, it would just be too difficult for them to learn to work with the device. Conclusions As with the Dutch TTSQ, the Turkish TTSQ needs improvement before it can be released. The results of this study confirm the conclusion of the Dutch TTSQ study that participants with low levels of education and little experience in using mobile technology are less able to operate the TTSQ effectively. Using a Dutch speaking interviewer and Turkish interpreter has had a negative effect on data collection in this study.
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