Constance H.C. Drossaert

Does the eHealth Literacy Scale (eHEALS) Measure What it Intends to Measure? Validation of a Dutch Version of the eHEALS in Two Adult Populations

Background The Internet increases the availability of health information, which consequently expands the amount of skills that health care consumers must have to obtain and evaluate health information. Norman and Skinner in 2006 developed an 8-item self-report eHealth literacy scale to measure these skills: the eHealth Literacy Scale (eHEALS). This instrument has been available only in English and there are no data on its validity. Objectives The objective of our study was to assess the internal consistency and the construct and predictive validity of a Dutch translation of the eHEALS in two populations. Methods We examined the translated scale in a sample of patients with rheumatic diseases (n = 189; study 1) and in a stratified sample of the Dutch population (n = 88; study 2). We determined Cronbach alpha coefficients and analyzed the principal components. Convergent validity was determined by studying correlations with age, education, and current (health-related) Internet use. Furthermore, in study 2 we assessed the predictive validity of the instrument by comparing scores on the eHEALS with an actual performance test. Results The internal consistency of the scale was sufficient: alpha = .93 in study 1 and alpha = .92 in study 2. In both studies the 8 items loaded on 1 single component (respectively 67% and 63% of variance). Correlations between eHEALS and age and education were not found. Significant, though weak, correlations were found between the eHEALS and quantity of Internet use (r = .24, P = .001 and r = .24, P = .02, respectively). Contrary to expectations, correlations between the eHEALS and successfully completed tasks on a performance test were weak and nonsignificant: r = .18 (P = .09). The t tests showed no significant differences in scores on the eHEALS between participants who scored below and above median scores of the performance test. Conclusions The eHEALS was assessed as unidimensional in a principal component analysis and the internal consistency of the scale was high, which makes the reliability adequate. However, findings suggest that the validity of the eHEALS instrument requires further study, since the relationship with Internet use was weak and expected relationships with age, education, and actual performance were not significant. Further research to develop a self-report instrument with high correlations with people’s actual eHealth literacy skills is warranted.

An exploration of chronic pain patients perceptions of home telerehabilitation services

Objectives  To explore patients’ perceptions regarding prospective telerehabilitation services and the factors that facilitate or impede patients’ intentions to use these services.

Does mammographic screening and a negative result affect attitudes towards future breast screening

OBJECTIVES:To investigate the impact of an experience of a benign mammographic result on intention to seek medical help immediately in the case of breast abnormalities, and on intentions and thoughts about future participation in screening. SETTING:The Dutch Breast Cancer Screening Programme for women aged 50–69. METHODS:Subjects were women who were invited for an initial breast examination: 223 women filled out a questionnaire about 10 days before and about 6 weeks after their initial breast examination. To be able to control for possible test effects, another group of 293 women filled out a questionnaire only after mammography. Changes in thoughts and intentions were examined. RESULTS:Most women were very satisfied with the course of their initial breast examination, although pain or discomfort was often mentioned. No clues to suggest false reassurance were found: more than 99% of the women would consider the possibility of breast cancer if they felt a lump in one of their breasts. In such a situation, most women intended to seek medical help within a week. These variables were not influenced by the experience of mammography with a benign result. In general, women were very positive about (repeat) participation, both before and after screening. After screening, the average woman perceived fewer costs in participating, and perceived her own ability to engage in future screening as higher. However, the experience of pain and anxiety during the initial screening did lead to reverse effects. Women who were less satisfied about their treatment by the staff were more likely to change their intentions to reparticipate in a negative way. CONCLUSIONS:As, in general, women became more positive about regular participation after they had attended breast cancer screening, efforts to improve first round attendance must be continued. At the same time, the screening organisations must continue to prioritise the high level of client friendliness throughout the screening. No evidence for detrimental effects of screening through false reassurance among participants was found.

Measuring Actual eHealth Literacy Among Patients With Rheumatic Diseases: a Qualitative Analysis of Problems Encountered Using Health 1.0 and Health 2.0 Applications

Background The Internet offers diverse opportunities for disease management, through information websites (Health 1.0) and interactive applications such as peer support forums, online consults, and insight into electronic medical records (Health 2.0). However, various skills are required to benefit from Health 1.0 and Health 2.0 applications for one’s own health, known as eHealth literacy. Objective To study the eHealth literacy of patients with rheumatic diseases and the types of problems they encounter when using the Internet in relation to their disease. Methods In two studies, patients were asked about their current disease-related Internet use and their eHealth literacy was observed during performance tests. In study 1, 15 patients (aged 39-74) performed 6 information-retrieval tasks on the Internet (Health 1.0). In study 2, 16 patients (aged 24-72) performed 3 Health 2.0 tasks on a hospital-based online Web portal and 2 Health 2.0 tasks on interactive websites. Participants were asked to think aloud while performing the assignments, and screen activities were recorded. Types and frequency of problems were identified by 2 independent researchers and coded into categories using inductive analysis. Results Almost all patients in our studies had searched the Internet for information about rheumatic diseases in the past. Fewer patients had used Health 2.0 applications, but many were nevertheless enthusiastic about the possibilities from Health 2.0 applications after finishing the assignments. However, nearly all participants experienced difficulties, and a substantial number of participants were not able to complete all of the assignments. Encountered problems could be divided into 6 sequential categories: (1) operating the computer and Internet browser, (2) navigating and orientating on the Web, (3) utilizing search strategies, (4) evaluating relevance and reliability, (5) adding content to the Web, and (6) protecting and respecting privacy. Most severe difficulties occurred in levels 3 and 4—in formulating a search query, evaluating the source of the information, and in scanning a website for relevant information. Conclusions Many patients have insufficient skills to properly use Health 1.0 and Health 2.0. Formulating proper search strategies and evaluating the found information caused problems among the majority of patients. Concerning Health 2.0, use and awareness of these applications is low and patients should be guided in the use of them. Our findings may contribute to the awareness of patients’ eHealth literacy problems among health professionals, and stress the importance of usability guidelines in Web design.

Prospective Study on the Determinants of Repeat Attendance and Attendance Patterns in Breast Cancer Screening Using the Theory of Planned Behaviour

This prospective study, using the Theory of Planned Behaviour (TPB) as a theoretical framework, was carried out to identify the determinants of repeat attendance and attendance patterns in organised breast screening. A group of 2657 women filled out a baseline questionnaire, approximately 8 weeks after having been invited for an initial screening in the Dutch Breast Cancer Screening Programme. Data on actual attendance in second and third screening round were subsequently collected. Personal variables such as family history of breast cancer, breast cancer in someone close and fear of breast cancer were not related to repeat attendance. The TPB variables could explain approximately 17% of the variance in attendance in the second and third round. Maintenance behaviour (consistent attendance vs. dropout) was related to the TPB variables, but the amount of variance explained was only 6%. Initiation of behaviour (consistent refusal vs. delayed attendance) also was related to TPB variables, with a substantially higher amount of explained variance than with maintenance behaviour. Results indicate that the TPB variables are more related to the initiation of screening behaviour than to the maintenance of screening behaviour. Implications of these findings for breast cancer screening are discussed.

Monitoring women's experience during three rounds of breast cancer screening: results form a longitudinal study.

OBJECTIVES: (a) To monitor experiences of women during three successive rounds of breast screening; (b) to examine the impact of previous experiences (obtained either immediately after the latest mammogram or shortly before the subsequent one) on reattendance; and (c) to examine which factors are associated with the experience of pain and distress during screening. SETTING: The Dutch Breast Cancer Screening Programme METHODS: 2657 women completed a baseline measurement (response rate 67%) about 8 weeks after they had been invited for an initial mammogram (T1). Actual participation data of these women in the second and third rounds of screening were collected. Follow up questionnaires were sent to subgroups of the sample at different times: shortly before the second screening (T2; response rate 86%), shortly after the second screening (T3; response rate 85%), shortly before the third screening (T; response rate 80%), and shortly after the third screening (T5; response rate 78%). RESULTS: Most women were satisfied with the first screening round and remained positive about subsequent screens. Although pain and anxiety were not uncommon, only a few (10%–15%) experienced moderate or severe levels of distress or pain. Experiences were relatively stable: women who experienced pain in the first screen were more likely to experience pain in subsequent screens (r values from 0.39 to 0.50). Fear of breast cancer was associated with increased distress related to mammography and, to a lesser extent, with increased pain during the mammography. Evidence was found for a relief effect: women were more positive about their previous screen when asked shortly after this screen, than when asked just before the subsequent one. Previous experiences (obtained either proximally or distally) were only slightly predictive for future attendance. CONCLUSION: Experiences during mammography are fairly stable. Negative experiences were generally not a reason to drop out of the programme.

Health education to improve repeat participation in the Dutch breast cancer screening programme: evaluation of a leaflet tailored to previous participants

Participation in breast cancer screening programmes often declines in the course of the programme. The purpose of the present study was to examine whether health education could diminish the amount of drop-outs between two screening rounds. The health education was tailored to women who previously underwent mammography. Based on the Elaboration Likelihood Model two versions of the tailored leaflet were made: a simple version and a version with additional peripheral cues. In an experimental study among 2961 women the effects of the tailored leaflets on reparticipation were tested against a standard leaflet. Re-participation rates were high (> 90%) and did not differ between the 3 groups. No significant differences regarding beliefs about re-participating were found between the 3 groups. Results indicate that the tailored information leaflets did not enhance re-participation. Therefore, the required additional efforts and costs do not seem to be justified. The results of the study provide indications that less painful mammograms and friendly staff might improve re-participation.

Impact of patient-accessible electronic medical records in rheumatology: use, satisfaction and effects on empowerment among patients

BackgroundTo measure the use, satisfaction and impact of a web portal which provides patients with rheumatoid arthritis home access to their electronic medical records (EMR).MethodsA pretest-posttest study was conducted among 360 patients. Questionnaires assessed socio-demographics, health literacy, Internet use, disease characteristics, patient-provider relationship and empowerment before and after launching a hospital-based patient web portal. To measure the impact of the portal, patients’ satisfaction with care, trust in their rheumatologist, self-efficacy in patient-provider communication, illness perceptions, and medication adherence were assessed. The post-test included questions on portal use, satisfaction, and self-perceived impact due to portal use.Results54% of respondents with Internet access had viewed their EMR. Respondents were positive about the ease of use and usefulness of the portal and reported very few problems. Age (P = .03), amount of Internet use (P = .01) and self-perceived Internet skills (P = .03) significantly predicted portal use. Of the respondents who had logged in, 44% reported feeling more involved in their treatment and 37% felt they had more knowledge about their treatment. Significant differences over time were not found on the empowerment-related instruments.ConclusionsThe current portal succeeded in offering patients access to their EMR in a usable and understandable way. While its true impact is difficult to grasp, a relevant portion of the patients felt more involved in their treatment due to the web portal. Offering patients home EMR access, therefore, appears to be a valuable addition to the care process.

Further validation of the 5-item Perceived Efficacy in Patient-Physician Interactions (PEPPI-5) scale in patients with osteoarthritis

OBJECTIVE To examine the structural validity, internal consistency, test-retest reliability, and construct validity of the 5-item Perceived Efficacy in Patient-Physician Interactions (PEPPI-5) scale in patients with osteoarthritis (OA). METHODS A cross-sectional sample of 224 outpatients with OA completed a survey containing the Dutch PEPPI-5 and other standardized measures assessing perceived health-management skills, general self-efficacy, social support, and health-related quality of life. A subsample of 100 patients completed the PEPPI-5 again approximately 3 weeks later. RESULTS Confirmatory factor analysis demonstrated good fit for a unidimensional model of the PEPPI-5. Additionally, the scale showed high internal consistency (α=0.92) and fair test-retest reliability (ICC=0.68). As hypothesized, the PEPPI-5 was strongly correlated with perceived health-management skills, moderately with social support and psychosocial aspects of health, and not with physical aspects of health. Contrary to expectations, however, it was not correlated with general self-efficacy. CONCLUSION The Dutch PEPPI-5 demonstrated adequate validity and reliability in patients with OA. PRACTICE IMPLICATIONS The PEPPI-5 is a brief and appropriate tool for measuring self-efficacy of patients with OA to interact with their physicians. Additional research into its sensitivity to change is needed before it can be confidently recommended as an outcome measure in intervention studies.

Determinants of Engagement in Face-to-Face and Online Patient Support Groups

Background Although peer-to-peer contact might empower patients in various ways, studies show that only a few patients actually engage in support groups. Objective The objective of our study was to explore factors that facilitate or impede engagement in face-to-face and online peer support, using the Theory of Planned Behavior. Methods A questionnaire was completed by 679 patients being treated for arthritis, breast cancer, or fibromyalgia at two Dutch regional hospitals. Results Our results showed that only a minority of the patients engaged in organized forms of peer support. In total 10% (65/679) of the respondents had engaged in face-to-face meetings for patients in the past year. Only 4% (30/679) of the respondents had contact with peers via the Internet in the past year. Patients were more positive about face-to-face peer support than about online peer support (P < .001). In accordance with the Theory of Planned Behavior, having a more positive attitude (P < .01) and feeling more supported by people in the social environment (P < .001) increased the intention to participate in both kinds of peer support. In addition, perceived behavioral control (P = .01) influenced the intention to participate in online peer support. Nevertheless, the intention to engage in face-to-face and online peer support was only modestly predicted by the Theory of Planned Behavior variables (R 2 = .33 for face-to-face contact and R 2 = .26 for online contact). Conclusion Although Health 2.0 Internet technology has significantly increased opportunities for having contact with fellow patients, only a minority seem to be interested in organized forms of peer contact (either online or face-to-face). Patients seem somewhat more positive about face-to-face contact than about online contact.