Participation rates of childhood cancer survivors to self-administered questionnaires: a systematic review.

This review aimed to assess participation rates of childhood cancer survivors (CCS) invited to fill out a health-related questionnaire. Additionally, effects of study and CCS characteristics on participation rates were examined. PubMed, Web of Science, Ovid (EMBASE) and CINAHL databases were searched. Publications included were questionnaire-based studies among CCS diagnosed with cancer before the age of 21, alive at least 5 years past diagnosis and aged 16 years or older at the time of study. Thirty-five studies were included; the median participation rate was 65%. Sixteen studies reported information about CCS actively declining participation (median rate 5%). Five study characteristics seemed to influence participation rates: the use of reminders and incentives, the option to answer a shortened questionnaire, the recruitment of participants through their general practitioner and a pre-notification before sending out the questionnaire. Furthermore, CCS characteristics related to improved participation were female gender, Caucasian ethnicity and a higher educational level. The results of this study will help to improve the (methodological) quality of future questionnaire-based studies among CCS, thereby increasing our knowledge about late effects among this group of survivors.

Using personas to tailor educational messages to the preferences of coronary heart disease patients.

PURPOSE: Although tailoring health education messages to individual characteristics of patients has shown promising results, most patient education materials still take a one-size-fits-all approach. The aim of this study was to develop a method for tailoring health education messages to patients' preferences for various message features, using the concept of personas. This is a preliminary study focused on education for coronary heart disease (CHD) patients. METHODS: This study used a three-step approach. First, we created personas by (i) performing k-means cluster analysis on data from an online survey that assessed the preferences of 213 CHD patients for various message features and, (ii) creating a vivid description of the preferences per patient cluster in an iterative process with the research team. Second, we developed adaptation rules to tailor existing educational messages to the resulting personas. Third, we conducted a pilot validation by adapting nine existing educational messages to each of the personas. These messages and the resulting personas were then presented to a separate group of 38 CHD patients who visited the cardiology outpatient clinic. They were first asked to choose their most preferred, second most preferred, and least preferred persona. Subsequently, they were asked to rate three of the adapted messages; one for every of the persona choices. RESULTS: We created five personas that pertained to five patient clusters. Personas varied mainly on preferences for medical or lay language, current or future temporal perspective, and including or excluding explicit health risks. Fifty-five different adaptation rules were developed, primarily describing adaptations to the message's perspective, level of detail, sentence structure, and terminology. Most participants in the validation study could identify with one of the five personas, although some of them found it hard to choose. On average, 68.5% of all participants rated the messages that matched their most preferred persona more positively than, or in the same way as, the messages that matched their least preferred persona. CONCLUSIONS: The persona-based method developed in this study can be used to create a manageable set of patient-centered tailored messages, while additionally using the developed personas to assess patients' preferences.

Final height in survivors of childhood cancer compared with Height Standard Deviation Scores at diagnosis.

BACKGROUND: Our study aimed to evaluate final height in a cohort of Dutch childhood cancer survivors (CCS) and assess possible determinants of final height, including height at diagnosis. PATIENTS AND METHODS: We calculated standard deviation scores (SDS) for height at initial cancer diagnosis and height in adulthood in a cohort of 573 CCS. Multivariable regression analyses were carried out to estimate the influence of different determinants on height SDS at follow-up. RESULTS: Overall, survivors had a normal height SDS at cancer diagnosis. However, at follow-up in adulthood, 8.9% had a height ≤-2 SDS. Height SDS at diagnosis was an important determinant for adult height SDS. Children treated with (higher doses of) radiotherapy showed significantly reduced final height SDS. Survivors treated with total body irradiation (TBI) and craniospinal radiation had the greatest loss in height (-1.56 and -1.37 SDS, respectively). Younger age at diagnosis contributed negatively to final height. CONCLUSION: Height at diagnosis was an important determinant for height SDS at follow-up. Survivors treated with TBI, cranial and craniospinal irradiation should be monitored periodically for adequate linear growth, to enable treatment on time if necessary. For correct interpretation of treatment-related late effects studies in CCS, pre-treatment data should always be included.

Usage of digital, social and goal-setting functionalities to support health behavior change: A mixed methods study among disadvantaged women during or after pregnancy and their healthcare professionals.

OBJECTIVE: We aimed to gain insight into how and to what extent social (i.e. private/group chat) and goal-setting (e.g. rewards) functionalities in digital interventions for health behavior change were used by clients and nurses in a preventive care program for disadvantaged women during or after pregnancy, and which factors influenced usage. METHODS: We collected quantitative and qualitative data on usage of these functionalities in 'Kindle', a mHealth intervention to prepare for health behavior change. RESULTS: We found that nurses (n = 5) and clients (n = 20) scarcely used both functionalities. They sent 862 messages in the social functionality whose security they appreciated, but habitually used WhatsApp likewise. Moreover, nurses were hesitant to let their clients interact in the group chat. Clients formulated 59 personal goals, which they found difficult to do. Nurses rewarded 846 points for clients' progress on goal attainment, but found it hard to determine how many points to reward. Clients and nurses indicated that the functionality made it more fun and easy to discuss clients' personal goals. CONCLUSIONS: To conclude, digital, social and goal-setting functionalities were used to a limited extent by nurses and clients, and need optimization before implementation to support disadvantaged groups to change their health behavior.

Classification and prioritization of usability problems using an augmented classification scheme.

Various methods exist for conducting usability evaluation studies in health care. But although the methodology is clear, no usability evaluation method provides a framework by which the usability reporting activities are fully standardized. Despite the frequent use of forms to report the usability problems and their context-information, this reporting is often hindered by information losses. This is due to the fact that evaluators' problem descriptions are based on individual judgments of what they find salient about a usability problem at a certain moment in time. Moreover, usability problems are typically classified in terms of their type, number, and severity. These classes are usually devised by the evaluator for the purpose at hand and the used problem types often are not mutually exclusive, complete and distinct. Also the impact of usability problems on the task outcome is usually not taken into account. Consequently, problem descriptions are often vague and even when combined with their classification in type or severity leave room for multiple interpretations when discussed with system designers afterwards. Correct interpretation of these problem descriptions is then highly dependent upon the extent to which the evaluators can retrieve relevant details from memory. To remedy this situation a framework is needed guiding usability evaluators in high quality reporting and unique classification of usability problems. Such a framework should allow the disclosure of the underlying essence of problem causes, the severity rating and the classification of the impact of usability problems on the task outcome. The User Action Framework (UAF) is an existing validated classification framework that allows the unique classification of usability problems, but it does not include a severity rating nor does it contain an assessment of the potential impact of usability flaws on the final task outcomes. We therefore augmented the UAF with a severity rating based on Nielsen's classification and added a classification for expressing the potential impact of usability problems on final task outcomes. Such an augmented scheme will provide the necessary information to system developers to understand the essence of usability problems, to prioritize problems and to tackle them in a system redesign. To investigate the feasibility of such an augmented scheme, it was applied to the results of usability studies of a computerized physician order entry system (CPOE). The evaluators classified the majority of the usability problems identically by use of the augmented UAF. In addition it helped in differentiating problems that looked similar but yet affect the user-system interaction and the task results differently and vice versa. This work is of value not only for system developers but also for researchers who want to study the results of other usability evaluation studies, because this scheme makes the results of usability studies comparable and easily retrievable.

Impact of alert specifications on clinicians' adherence.

Computerized alerts provided by health care information systems have been shown to enhance clinical practice. However, clinicians still override more than half of the alerts. This indicates that certain aspects of alerts need improvement to fulfill their purpose of supporting clinicians in decision making. This paper reports on a systematic review on studies evaluating alert specifications and their impact on clinicians' alert adherence. The review revealed that use of colors and icons to distinguish different alert severity levels and presenting high severity alerts in an interruptive fashion increases clinicians adherence to alert recommendations. Alert message contents that lack clinical importance or provide incorrect texts increase alert non-adherence. Few studies have yet focused on the impact of alert specifications on clinicians' adherence. A research agenda is needed on alert specifications and their impact on clinicians' adherence in order to develop alerts that truly support clinician decision making.

Factors known to influence acceptance of clinical decision support systems.

Clinical Decision Support Systems (CDSS) have been shown to improve clinical performance and patient outcomes, but the failure rate of such systems is still over 50 percent. To contribute to a wider understanding of issues surrounding CDDS acceptance, we performed a systematic review of studies that evaluated CDSS implementations in clinical care to determine the factors that are associated with acceptance of CDSS by physicians. The factors that were found were categorized according to the HOT-fit framework. The mapping of factors concerning CDSS acceptance on the HOT-fit framework revealed gaps in each domain of the framework and showed that research has mainly focused on human and technology factors and a lack of research on organizational factors. A potential area of research could thus be studying the organizational factors that may influence CDSS acceptance.

Reducing clinicians' cognitive workload by system redesign; a pre-post think aloud usability study.

Interactive Health Information systems are often considered cognitively complex by their users, leading to high cognitive burden and increased workload. This paper explores if Think Aloud usability testing provides valuable input to effectively redesign a web-based Data Query Tool in Intensive Care and to reduce physicians' cognitive workload during system interaction. Pre and post redesign usability testing demonstrated a major reduction in the cognitive task workload after redesign of the tool. Classification of revealed usability problems by means of the User Action Framework pointed out that usability problems related to the cognitively planning of actions by system users foremost affected cognitive task workload. This result may support Health Information system (re)design efforts on how to tackle the system's cognitive complexity and in so doing improve on its usability.

Proclets in healthcare.

Healthcare processes can be characterized as weakly-connected interacting light-weight workflows coping with different levels of granularity. Classical workflow notations fall short in supporting these kind of processes. Although these notations are able to describe the life-cycle of individual cases and allow for hierarchical decomposition, they primarily support monolithic processes. However, they are less suitable for healthcare processes. The Proclets framework is one formalism that provides a solution to this problem. Based on a large case study, describing the diagnostic process of the gynecological oncology care process at the Academic Medical Center (AMC), we identify the limitations of "monolithic workflows". Moreover, by using the same case study, we investigate whether healthcare processes can be described effectively using Proclets. In this way, we provide a comparison between the Proclet framework and existing workflow languages and identify research challenges.

Serious games for smoking prevention and cessation: A systematic review of game elements and game effects.

OBJECTIVE: Serious health games might have the potential to prevent tobacco smoking and its health consequences, depending on the inclusion of specific game elements. This review aimed to assess the composition of serious games and their effects on smoking initiation prevention and cessation and behavioral determinants. MATERIALS AND METHODS: We systematically searched MEDLINE, Embase, PsycINFO, and Web of Science for publications that evaluated serious games aimed at changing smoking behavior or behavioral determinants. A taxonomy by King et al was used to classify game elements. RESULTS: We identified 15 studies, evaluating 14 unique serious games. All games combined multiple game elements (mean 5.5; range, 3-10). Most frequently used were general and intermittent rewards, theme and genre features, and punishments. Six studies on smoking prevention together assessed 20 determinants and found statistically significant positive effects for 8 determinants (eg, attitude, knowledge, intention). Of 7 studies on smoking cessation, 5 found positive, statistically significant effects on smoking cessation or status. These studies found statistically significant positive effects for 6 of 12 determinants (eg, self-efficacy, attitude, intention). The majority of included studies had poor or fair methodological quality, lacked follow-up measures, and had fixed (as opposed to free, on-demand) play sessions. CONCLUSIONS: Serious games included multiple types of game elements. The evidence from a number of studies suggests that games may have positive effects on smoking-related outcomes, particularly smoking cessation. However, as most studies had important methodological limitations, stronger designs are needed to demonstrate, quantify, and understand the effects of serious games.

Mobile health for older adult patients: Using an aging barriers framework to classify usability problems.

BACKGROUND: With populations aging, digital health tools and mobile health applications (mHealth) are becoming more common to assist older people in independent living and self-management of (chronic) illnesses. These mHealth services can be beneficial to older patients, provided that they are adjusted to their needs and characteristics, as the current mHealth landscape lacks user-friendly services for this target group. Understanding of intrinsic aging barriers, which cause and impact usability problems older patients encounter, is needed to achieve this. OBJECTIVES: This study set out to assess usability problems older patients encounter in two mHealth apps and aims to show the value of MOLD-US, a recent aging barriers framework, as a classification tool to identify the intrinsic cause of these problems. METHOD: A case-study design, with in-depth analysis of usability issues older adult patients' experience. Data on usability issues were collected using the Think Aloud Protocol for two mHealth apps. The MOLD-US framework and Nielsen's severity rating were used to classify identified issues and their potential impact. RESULTS: In total 28 high severe usability issues of the mHealth apps were identified. Core natures of most issues were related to motivational and cognitive barriers of older adults. Participants had difficulties in understanding the navigation structure of the apps. Important text, buttons and icon elements were overseen. CONCLUSION: Current knowledge on creating interfaces for older target groups is not well applied within the assessed mHealth designs. Specifically, design guidelines should address older adults' diminishing cognition skills, physical ability and motivational barriers. By classifying usability problems with MOLD-US, insights on these barriers can be enhanced to adequately address these issues in new designs. In addition, we propose that future research focuses on investigating suitable usability evaluation methods adapted to older patients' characteristics to ultimately be able to gain unbiased sight on usability issues older patients may experience while interacting with technology.

A usability study to improve a clinical decision support system for the prescription of antibiotic drugs.

OBJECTIVE: A clinical decision support system (CDSS) for empirical antibiotic treatment has the potential to increase appropriate antibiotic use. Before using such a system on a broad scale, it needs to be tailored to the users preferred way of working. We have developed a CDSS for empirical antibiotic treatment in hospitalized adult patients. Here we determined in a usability study if the developed CDSS needed changes. METHODS: Four prespecified patient cases, based on real life clinical scenarios, were evaluated by 8 medical residents in the study. The "think-aloud" method was used, and sessions were recorded and analyzed afterwards. Usability was assessed by 3 evaluators using an augmented classification scheme, which combines the User Action Framework with severity rating of the usability problems and the assessment of the potential impact of these problems on the final task outcomes. RESULTS: In total 51 usability problems were identified, which could be grouped into 29 different categories. Most (n = 17/29) of the usability problems were cosmetic problems or minor problems. Eighteen (out of 29) of the usability categories could have an ordering error as a result. Classification of the problems showed that some of the problems would get a low priority based on their severity rating, but got a high priority for their impact on the task outcome. This effectively provided information to prioritize system redesign efforts. CONCLUSION: Usability studies improve lay-out and functionality of a CDSS for empirical antibiotic treatment, even after development by a multidisciplinary system.

Training inter-physician communication using the Dynamic Patient Simulator.

PURPOSE: Clear and adequate communication between physicians is essential in modern medicine. Nevertheless, the medical curricula in The Netherlands lack an identifiable part in their education concerning inter-physician communication training. To train medical students in inter-physician communication skills using the Dynamic Patient Simulator (DPS), the Academic Medical Center at the University of Amsterdam and the Leiden University Medical Center joined in a 2-year project sponsored by the Dutch government. DPS is an educational computer program to create and simulate virtual patients with a wide variety of medical conditions in different clinical settings and over different time frames. To evaluate whether DPS is a suitable method for training medical students in inter-physician communication, we assessed if medical students felt that they had improved their inter-collegial communication skills after the pilot with DPS. Besides, we inquired students on DPS' usability and their satisfaction with DPS. METHODS: We first developed and implemented 20 patient simulations in DPS to be practiced upon by two students asynchronously during a week. These students were situated in different medical institutions, geographically spread over The Netherlands and had to treat the virtual patient as a team supported by DPS. The students had to report their findings and treatment plan in the electronic referral form of DPS. A total of 134 students participated in the pilot. To evaluate inter-physician communication training using DPS we conducted a survey amongst these students who were entering their internships. The evaluation focused on self-assessment of their communication skills, usability of the DPS program, and their satisfaction with DPS as educational format, using multiple questionnaires. DISCUSSION: The outcome of the evaluation showed significant progression in students' feeling of improvement of their skills in different aspects concerning the referral of a patient after participating in the pilot. Besides, students evaluated the usability of DPS positive and were highly satisfied with the education in inter-physician communication training using DPS. Based on these outcomes, nowadays this form of training is incorporated in the curricula on a regular basis.

An international summer school on health informatics: a collaborative effort of the Amsterdam Medical Informatics Program and IPhiE--the International Partnership for Health Informatics Education.

PURPOSE: Today, the need for health informatics training for health care professionals is acknowledged and educational opportunities for these professionals are increasing. To contribute to these efforts, a new initiative was undertaken by the Medical Informatics Program of the University of Amsterdam-Academic Medical Center and IPHIE (IPhiE)-the International Partnership for Health Informatics Education. In the year 2004, a summer school on health informatics was organized for advanced medical students from all over the world. METHODS: We elaborate on the goals and the program for this summer school. In developing the course, we followed the international guidelines of the International Medical Informatics Association-IMIA. Students provided feedback for the course through both summative and formative evaluations. As a result of these evaluations, we outline the lessons we have learned and what consequences these results have had in revising the course. RESULTS: Overall the results of both the summative and formative evaluation of the summer school showed that we succeeded in the goals we set at the beginning of the course. Students highly appreciated the course content and indicated that the course fulfilled their educational needs. The decision support and image processing computer practicums however proved too high level. We therefore will redesign these practicums to competence requirements of medical doctors as defined by IMIA. All participants recommended the summer school event to other students. CONCLUSIONS: Our experiences demonstrated a true need for health informatics education among medical students and that even a 2 weeks course can fulfill health informatics educational needs of these future physicians. Further establishment of health informatics courses for other health professions is recommended.

Development of a national protocol to screen Dutch cancer survivors on late cancer treatment effects.

PURPOSES: The development of a national protocol to formalize the screening of Dutch cancer survivors on potential late cancer treatment effects and the medical terminology used in describing the patient follow up procedures. METHODS: A combined evidence-based and qualitative approach, the Glaser's State of the Art Strategy, was used to reach consensus on how to screen Dutch cancer survivors on late cancer treatment effects. A core working group set up a first proposal of a screening protocol and a handbook of medical term definitions by incorporating available research evidence (1980-2003), clinical expertise and definitions from Dutch medical dictionaries and textbooks. External experts reviewed this proposal in a cycle of two postal and two discussion rounds. The follow-up procedures and medical term definitions described in the draft screening protocol were to be accepted if consensus among external experts was > or =50%. RESULTS: A protocol for screening cancer survivors on late cancer treatment effects was developed describing the follow-up procedures for cancer survivors according to previous therapeutic exposures. Four hundred and twenty one medical terms were used in describing these follow-up procedures. One hundred and fifteen of these terms were classified as multi-interpretable and 101 of these terms were defined. No definitions could be found for the remaining 14 medical terms. CONCLUSIONS: We succeeded in reaching consensus throughout The Netherlands on a protocol to screen cancer survivors on late cancer treatment effects. This protocol is now in use by all Dutch outpatient clinics and warrants that the screening of cancer survivors is consistent across The Netherlands. The screening protocol specifies in detail how screening of cancer survivors should take place and can therefore be used by clinicians who were not involved in the consensus study.

Factors influencing implementation success of guideline-based clinical decision support systems: A systematic review and gaps analysis.

OBJECTIVE: To provide an integrated and differentiated understanding of factors influencing guideline-based CDSS implementation and illustrate the gaps in the current literature. MATERIALS AND METHODS: A systematic literature review and in-depth exploration of factors impeding or facilitating successful implementation of guideline-based CDSS supporting physicians in clinical decision-making was performed. Factors were identified thematically by textual analysis of the included publications and were individually mapped to the human, organization and technology-fit (HOT-fit) framework for evaluating implementations of health information systems. RESULTS: A total of 421 factors were found in 35 included publications from a total of 3676 publications. The mapping of factors concerning CDSS implementation on the HOT-fit framework revealed gaps in each domain of the framework and showed that research has mainly focused on human and technology factors and less on organizational factors. CONCLUSIONS: Future research within the field of guideline-based CDSS should focus on evaluating implementations through the use of socio-technical models to study guideline-based CDSS system implementations from a multidimensional view. Furthermore, research is needed to explore whether use of these models during the planning phases of a CDSS project is useful in anticipating and preventing implementation barriers from occurring and exploiting facilitators to a successful implementation of the system.

IMIA Accreditation of Biomedical and Health Informatics Education: Current State and Future Directions.

Objectives: The educational activities initiated by the International Medical Informatics Association (IMIA) have had global impacts and influenced national societies and local academic programs in the field of Biomedical and Health Informatics (BMHI). After the successful publication and dissemination of its educational recommendations, IMIA launched an accreditation procedure for educational programs in BMHI. The accreditation procedure was pilot tested by several BMHI academic programs in different countries and continents to obtain a global perspective. Methods: This paper presents an overview of IMIA quality assurance and accreditation procedures along with feedback on issues and problems which emerged during the pilot. Results: It appears that IMIA quality assurance and procedures worked quite well in different countries of Europe, the Middle East, South America, and Asia. These first experiences provided adequate information for adapting, modifying, and optimizing the procedures and finally for the planning of future activities. Conclusions: IMIA accreditation framework comprises a single set of standards that apply at various levels to both academic and professional BMHI programs. The pilot phase confirmed the robustness and generalizability of quality assurance standards and associated procedures on which IMIA accreditation is based at an international level.

Impact of Patient-centered eHealth Applications on Patient Outcomes: A Review on the Mediating Influence of Human Factor Issues.

OBJECTIVES: To examine the evidence of the impact of patient- centered eHealth applications on patient care and to analyze if and how reported human factor issues mediated the outcomes. METHODS: We searched PubMed (2014-2015) for studies evaluating the impact of patient-centered eHealth applications on patient care (behavior change, self-efficacy, and patient health-related outcomes). The Systems Engineering Initiative for Patient Safety (SEIPS 2.0) model was used as a guidance framework to identify the reported human factors possibly impacting the effectiveness of an eHealth intervention. RESULTS: Of the 348 potentially relevant papers, 10 papers were included for data analysis. None of the 10 papers reported a negative impact of the eHealth intervention. Seven papers involved a randomized controlled trial (RCT) study. Six of these RCTs reported a positive impact of the eHealth intervention on patient care. All 10 papers reported on human factor issues possibly mediating effects of patient-centered eHealth. Human factors involved patient characteristics, perceived social support, and (type of) interaction between patient and provider. CONCLUSION: While the amount of patient-centered eHealth interventions increases, many questions remain as to whether and to what extent human factors mediate their use and impact. Future research should adopt a formal theory-driven approach towards human factors when investigating those factors' influence on the effectiveness of these interventions. Insights could then be used to better tailor the content and design of eHealth solutions according to patient user profiles, so as to enhance eHealth interventions impact on patient behavior, self-efficacy, and health-related outcomes.

Influence of Human Factor Issues on Patient-Centered mHealth Apps' Impact; Where Do We Stand?

This paper discusses the preliminary results of a literature review on studies published in 2014-2015 concerning patient-centered mHealth applications' (apps) impact. Abstracts were included when they described a mHealth app targeted at patients and reported on the effects of this app on patient care. From a total of 559 potentially relevant articles, 17 papers were finally included. Nine studies reported a positive impact of the patient-centered mHealth app on patient care; 4 of these studies were randomized controlled trials. Measured impacts in the 17 studies focused on improving patients' physical activity, self-efficacy and medication adherence. Human factors issues potentially mediating these effects were discussed in all studies. Transitions in the interaction between healthcare providers and their patients were most often discussed as influencing the impact of the mHealth app. More research is needed, focussing on human issues mediating the effect of patient-centered mHealth apps to precipitate knowledge on the effectiveness of mHealth. This research should preferably be guided by socio-technical models.