The AIMS home-video method: parental experiences and appraisal for use in neonatal follow-up clinics.

BACKGROUND: In The Netherlands, prematurely born infants and their parents are offered regular developmental check-ups in a hospital setting. In line with providing healthcare at distance, the use of video footage showing the infant's behavior and movements, taken by parents at home and assessed by professionals online, might be a fruitful future practice. The focus of this study was to gain insight into parental experiences with the Alberta Infant Motor Scale home-video method and their appraisal of its applicability for use in an outpatient neonatal follow-up clinic. METHOD: A qualitative descriptive study among parents of healthy extremely or very premature infants (GA 26.2-31.5 weeks) participating in a longitudinal study of motor development between 3-18 months corrected age. Ten semi-structured interviews were conducted and transcribed verbatim. Data was analyzed independently. Inductive content analysis was performed following the process of the AIMS home-video method. RESULTS: Parents appraised the AIMS home-video method as manageable and fun to do. Instructions, instruction film, and checklists were clear. Transferring the video footage from their phone to their computer and uploading it to the web portal was sometimes time-consuming. Parents gained a better awareness of their infant's motor development and found the provided feedback a confirmation of what they already thought about their infant's development and was reassuring that their child was doing well. First-time parents seemed more uncertain and had a greater need for information about (motor) development, but on the other hand, also had confidence in their child. All parents thought that home-videos can be an addition to follow-up visits, but cannot replace (all) visits. It may be an opportunity to reduce the frequency of hospital visits, while still having their infant monitored. CONCLUSION: Parents appraised the AIMS home-video method positively and are of the opinion that home-videos can be of added value in monitoring infants at risk in neonatal follow-up additional to hospital visits. In future research a user-friendly application and/or platform to exchange video footage safely between parents and professionals should be developed with all possible stakeholders involved and implementation should be explored.

Validation of the Dutch Quality of Life in Hand Eczema Questionnaire (QOLHEQ).

BACKGROUND: Measurement instruments should be validated for use in the population for which they are intended. The Quality of Life in Hand Eczema Questionnaire (QOLHEQ) has been developed to measure impairment of health-related quality of life in patients with hand eczema. OBJECTIVES: To assess validity, reproducibility, responsiveness and interpretability of the Dutch version of the QOLHEQ. METHODS: This was a prospective validation study in adult patients with hand eczema. At three time points (T0 , baseline; T1 , after 1-3 days; T2 , after 4-12 weeks), data from the QOLHEQ and multiple reference instruments were collected. Scale structure was assessed using item response theory analysis and structural equation modelling (SEM). Single-score validity and responsiveness were tested with hypotheses on correlations with reference instruments. Concerning reproducibility, intraclass correlation coefficients (ICCagreement ) and standard error of agreement (SEMagreement ) were checked. Regarding interpretability, bands for severity of quality-of-life impairment were proposed. Also, smallest detectable change (SDC) and minimally important change (MIC) were determined. RESULTS: At T0 , 300 individuals participated in the study (54% were male, mean age 45 years). Rescoring of the scale structure fitted the Rasch model and the SEM. The ICCagreement was 0·91 (95% confidence interval 0·85-0·94) and the SEMagreement was 5·2 points. Of the a priori formulated hypotheses, 80% (single-score validity) and 64% (change scores for responsiveness) were confirmed. The SDC was 14·4 points and the MIC was 11·5 points. CONCLUSIONS: The Dutch version of the QOLHEQ has a good structural validity and reproducibility and has a high single-score validity and moderate responsiveness. An improvement of ≥ 15 points should be regarded as a real, important change within the Dutch population. What's already known about this topic? The Quality of Life in Hand Eczema Questionnaire (QOLHEQ) measures impairment of health-related quality of life (HRQoL) in patients with hand eczema. The QOLHEQ was validated in Germany and Japan, but the validity and interpretability of the Dutch version are unknown. What does this study add? This study shows that the Dutch QOLHEQ is a valid instrument to measure HRQoL impairment in Dutch patients with hand eczema, demonstrating good reliability and moderate responsiveness. Methods of item response theory are applied to assess and refine the scoring structure. Severity gradings to interpret single and change scores, specifically in Dutch patients, are proposed. What are the clinical implications of this work? The Dutch QOLHEQ can now be used to measure HRQoL impairment in Dutch patients with hand eczema.

Responsiveness and interpretability of the Hand Eczema Severity Index.

BACKGROUND: The Hand Eczema Severity Index (HECSI) is used to measure the severity of hand eczema. It is unclear what HECSI scores mean and what is the minimally important change (MIC). Furthermore, its responsiveness has not been studied. OBJECTIVES: To study the responsiveness and interpretability of the HECSI. METHODS: This was a prospective study covering two time points: baseline and after 4-12 weeks. Responsiveness was assessed using a criterion approach, with at least one-step improvement on the 'Photographic guide for severity of hand eczema' as the anchor for important improvement. Interpretability of single scores was determined by defining severity bands based on agreement with the anchor. For change scores, the smallest detectable change (SDC) was calculated in patients indicating no change and the MIC was obtained in patients indicating that they had changed using three methods: mean cutoff, receiver operating characteristic (ROC) curve and 95% limit. RESULTS: In total, 294 patients participated (160 male, mean age 44·9 years). HECSI scores improved or deteriorated in parallel with the anchor. The area under the ROC curve was 0·86 (95% confidence interval 0·81-0·91). The final severity band for single scores had a κ-coefficient of agreement of 0·694: clear, 0; almost clear, 1-16; moderate, 17-37; severe, 38-116; very severe, ≥ 117. The SDC in 93 unchanged patients was 40·3 points. The obtained MIC values were all smaller than the SDC. CONCLUSIONS: The HECSI has good responsiveness. This study gives meaning to HECSI scores, which can be applied to clinical decision making and the design of clinical trials. We recommend that an improvement of 41 points on the HECSI is regarded as the minimally measurable true change. What's already known about this topic? The Hand Eczema Severity Index (HECSI) is one of the most widely used measurement instruments to measure the severity of hand eczema. The HECSI has good reliability, but its responsiveness and interpretability have not been studied. What does this study add? This study shows good responsiveness of the HECSI. A severity grading for single scores is proposed. The smallest detectable change and minimally important change for improvement are determined. What are the clinical implications of this work? The obtained values help to interpret HECSI scores in daily practice and clinical studies, and may facilitate researchers in the calculation of sample sizes for clinical trials.

Validation of the short assessment of health literacy (SAHL-D) and short-form development: Rasch analysis.

BACKGROUND: Accurate measurement of health literacy is essential to improve accessibility and effectiveness of health care and prevention. One measure frequently applied in international research is the Short Assessment of Health Literacy (SAHL). While the Dutch SAHL (SAHL-D) has proven to be valid and reliable, its administration is time consuming and burdensome for participants. Our aim was to further validate, strengthen and shorten the SAHL-D using Rasch analysis. METHODS: Available cross-sectional SAHL-D data was used from adult samples (N = 1231) to assess unidimensionality, local independence, item fit, person fit, item hierarchy, scale targeting, precision (person reliability and person separation), and presence of differential item functioning (DIF) depending on age, gender, education and study sample. RESULTS: Thirteen items for a short form were selected based on item fit and DIF, and scale properties were compared between the two forms. The long form had several items with DIF for age, gender, educational level and study sample. Both forms showed lower measurement precision at higher health literacy levels. CONCLUSIONS: The findings support the validity and reliability of the SAHL-D for the long form and the short form, which can be used for a rapid assessment of health literacy in research and clinical practice.

Patient education and health literacy.

INTRODUCTION: Patient education is a relatively new science within the field of health care. In the past it consisted mainly of the transfer of knowledge and mostly biomedically based advice. Research has shown this to not be effective and sometimes counterproductive. As health care has moved away from applying a traditional paternalistic approach of 'doctor knows best' to a patient-centred care approach, patient education must be tailored to meet persons' individual needs. PURPOSE: The purpose of this master paper is to increase awareness of patients' health literacy levels. Health literacy is linked to literacy and entails people's knowledge, motivation and competences to access, understand, appraise and apply health information in order to make judgements and take decisions in everyday life concerning health care, disease prevention and health promotion to maintain or improve quality of life during the life course. Many patients have low health literacy skills, and have difficulty with reading, writing, numeracy, communication, and, increasingly, the use of electronic technology, which impede access to and understanding of health care information. IMPLICATIONS: Multiple professional organizations recommend using universal health literacy precautions to provide understandable and accessible information to all patients, regardless of their literacy or education levels. This includes avoiding medical jargon, breaking down information or instructions into small concrete steps, limiting the focus of a visit to three key points or tasks, and assessing for comprehension by using the teach back cycle. Printed information should be written at or below sixth-grade reading level. Visual aids can enhance patient understanding.

Is there an increased risk of cervical neoplasia in atopic dermatitis patients treated with oral immunosuppressive drugs?

BACKGROUND: Oral immunosuppressive drugs are frequently prescribed in young women with atopic dermatitis (AD). Immunocompromised patients may have a higher risk of developing high-risk HPV infections, cervical intra-epithelial neoplasia (CIN) and cervical carcinoma. Most literature on patients using oral immunosuppressive drugs is available in organ transplant patients. Literature on the risk of developing cervical carcinoma in AD patients treated with oral immunosuppressive drugs is lacking. At this moment, there is no clear guideline/consensus on this topic, but in daily practice, questions arise concerning whether this risk is increased and whether more intensive screening in women using immunosuppressive drugs should take place. OBJECTIVE: To investigate the occurrence of cervical carcinoma in women with AD treated with oral immunosuppressive drugs. METHODS: In this retrospective cohort study in two university medical centres in the Netherlands, all female adult AD patients receiving oral immunosuppressive drugs (cyclosporine A, azathioprine, methotrexate, mycophenolate mofetil, enteric-coated mycophenolate sodium and extended release tacrolimus) for more than 2 months between 1989 and 1 January 2014 were included. Patient files in the national histopathology register were screened for PAP3a, CIN I, CIN II, CIN III and cervical carcinoma. RESULTS: A total of 257 female AD patients with one or more treatment episodes from 1989 until 1 January 2014 were identified and included in this study. In 189 patients (73.5%), results of cervical examination were reported in the national histopathology database. Median total duration of treatment in these 189 women was 407.0 days (IQR 243.0-940.0). No cervical carcinoma during or following immunosuppressive therapy was found in our patient group. CONCLUSIONS: No intensified screening programme for cervical neoplasia seems necessary for women with AD using oral immunosuppressive drugs.