1 Community Health Active Response Toolkit A study of critical issues in designing an electronic patient tracking system for a HIV home based care program in Lusaka, Zambia. D-Lab Project Report Spring 2005 Samantha Goldstein Timothy Heidel Nadja Oertelt Alisa Rhee Instructor: Amy Smith TA: Will DelHagen 2 1.0 Introduction and Problem Statement ..................................................................3 2.0 Design Specifications...........................................................................................4 3.0 Design Process ....................................................................................................5 3.1. Requirements Gathering ..............................................................................6 4.0 Design Choices/Recommendations ....................................................................8 4.1. Information Content Requirements .............................................................8 4.2. Paper Forms .................................................................................................10 4.3. Electronic Data Entry ..................................................................................12 4.4. Report Generation ........................................................................................16 4.5. Decision Support ..........................................................................................20 5.0 Lessons Learned...................................................................................................31 6.0 Conclusion/Future Work .....................................................................................31 7.0 Appendices 7.1. Appendix A: Basic Health Statistics in Zambia ...........................................32 7.2. Appendix B: Form Content ..........................................................................35 7.3. Appendix C: Paper Forms ............................................................................54 7.4. Appendix D: Questions For Report Generation ...........................................55 3 1.0 Introduction and Problem Statement The role of the D-Lab team in creating a software system for the Power of Love Organization in Lusaka, Zambia has been manifold. In undertaking the development of a patient tracking system for this start-up HIV/AIDS care organization; we have encountered a great many challenges in determining effective design criteria, and eventually, an effective design for the stakeholder. The high rate of HIV infection in Lusaka, Zambia and lack of sufficient traditional health care options have resulted in the need for home-based care programs. Current home-based care record-keeping systems are paper-based and do not provide easy access to patient visit history, decision assistance, and program statistics. We are designing a system that tracks patient encounters, provides decision support, and reports statistics for disease epidemiology and donor assessment. We are developing this system for the Power of Love home-base care program. Therefore, it must be easy-to-learn and use, locally maintainable, scalable, and provide all the needed functionality. The Power of Love Organization approaches the pediatric HIV/AIDS epidemic in Zambia with an alternate method of care and training. (Please see Appendix A for basic statistics on health in Zambia.) Because of the lack of medically trained doctors and nurses, the organization seeks to train community members in basic medical care and employ these trained community health workers. Children accepted into the Power of Love’s program are cared for in a novel manner; a member of the patient’s family is trained in basic HIV/AIDS care and is visited weekly by one of the organizations’ community health care workers. Nurses employed by the organization and trained to a more advanced level, additionally visit patients monthly. Additional ideas for a mobile clinic and hospice are currently being examined by the organization but are outside the scope of our project design. A model of patient information data flow from home to server will be outlined in this report, as will a more detailed explanation of the home-based care system. The D-Lab team has been working with full-time employees of the Power of Love Organization and a software development team from MIT to design a tracking system that is scalable to other home-based care organizations. As a D-Lab team, we have been developing a software prototype; our system is a smaller, working model of the larger database being created by the MIT development team. Additionally, we have been working to create paper tracking forms that are graphically cohesive with our database entry system, as well as devising a strategy for medical decision support and training. We will outline the design process that led to our final prototype software system, as well as problems that arose. A comprehensive look at medical form content, decision support, software and report generation, and paper form design will hopefully allow for the success in future development of this patient tracking system. 4 2.0 Design Specifications In order to successfully design a software system and paper forms, we determined a set of design specifications that would give us parameters for our prototype and design. After brainstorming a slew of possible design specifications as well as looking at alternatives for certain specifications, we determined the following to be our constraints in designing software and paper forms: o Language: English o Font Size: 14+ o Forms: Picture based with text o GUI: Iconic Based o Forms: Family Care Giver: One form (diary)/week o Data Collection Times (maximum) Family Caregiver (Form): 5 minutes Data Entry of One Week’s worth of info without complications: 4 minutes/patient Data Entry of One Week’s worth of info with complications: 10 minutes/patient o Patient storage (minimum): 10,000 patients o Decision Support: Flexible to accommodate future system expansion/inclusion of decision support. o Consolidation points for data entry (maximum): 3 o Processing Time for Database Queries for Statistical Analysis: < 30 minutes o Modules: Scalable to at least twenty modules o Maximum Training Times: Family Care Giver (Form Use): One hour Community Health Worker (Form and/or PDA): Three Hours Data Entry Worker: One day o Security: Access to files based upon position. o Server authentication is necessary o System Backup: Backup and replication at least every three months. o Maximum transmission of data: 2 MB/transmission. o Power: Mains electricity o Time for System Installation (By Team): < One week 5 3.0 Design Process The design process for the development of software contrasts sharply with the process necessary for engineering mechanical systems. Because the development of the software system required us to work with a development team as well as the leadership of the Power of Love organization, we were required to constantly reevaluate our design and our goals. Early on in the design process, we evaluated our stakeholders and their relevance in shaping the way we created the tracking system. We brainstormed possible design specifications and design concepts for a final system and, additionally, evaluated all possible ideas for a final prototype system. The creation of a problem statement narrowed the focus of our role as the D-Lab team. Examining our stakeholders led us to the conclusion that usability is a huge focus for any software and tracking system that requires a large amount of data entry. It was hugely important that information would not be lost in the process of being transferred from patient to paper form to server. Since our primary stakeholders, the organization, donors, caregivers and patients, all relied on the ease of use of the software system as well as the quality of information taken from the system; usability was a constant factor in our design. During concept evaluation, we examined alternate designs for decision support, report generation, paper forms, database technology, evaluation for system success, paper data transmission, and training methods for use of paper forms as well as the possibility of PDA use within the data flow model. Using standard Pugh charts, we examined a multitude of designs for each of our system concepts. The determination of final concepts will be outlined further within this report. 6 3.1 Requirements Gathering Over spring break, two members of the D-LAB team traveled to Zambia to determine which ICT technology is appropriate for this community, where technological fluency vastly differs from individual to individual and Internet communication is complicated by power outages and unreliable service from commercial ISP providers. The objective was to understand the practices and schedules of community health workers in existing home based care programs and to realistically assess the appropriateness of data entry, transfer, and update between the data gathered from the health worker to the central repository for data. It was also important to understand the cultural values of privacy, views of communication and information sharing, and reception to new technologies. It was difficult to solicit honest opinions from members of the community that were interviewed. Because individuals perceived us as a possible donor source, it appeared that they were very cautious in providing constructive criticism regarding existing home based care programs and general health care in Zambia. An HIV Peer educator went so far as to deny that an AIDS stigma existed in Zambia. However, in general, it was apparent that members of the community valued privacy regarding their HIV status and were weary of sharing this type of information. Therefore, it is possible that families will be concerned about the method of paper form collection as HIV status information is recorded on these documents. Representatives from SHARE, an organization that is working to coordinate the efforts of AIDS NGO’s in Zambia, commented that information gathering is often received by patients with suspicion. One member of POL that is working onsite, Melissa Edo, conducted interviews of home base care programs in Lusaka to find areas of improvement. She found that there is little trust in the governance of home-based care programs in Zambia. This is also true for other home based care programs in other parts of Africa. Because care supporters are entrusted with food to bring to their patients, households often feel that the care supporters (almost the equivalent of community nursing assistants in the POL model) are mismanaging the resources that are given to them. We had the opportunity to accompany care supporters in their weekly visits, and almost every household we visited asked us for food. We were concerned that if families are hesitant to share health data, and suspicious of the use of this information that is being collected, the use of devices such as personal digital assistants (PDA) may exasperate the trust needed between community nursing assistants and families. Care supporters from some organizations are explicitly told not to write down or record any information in the presence of the patient’s family, as this would be viewed with mistrust. Because families are mainly concerned about sufficient food, families may be sensitive to the usage of expensive devices, especially because it may be used to collect sensitive data such as HIV related information. On the other hand, PDAs may be empowering, it may be useful for nursing assistants to have more information readily available to them, including patient history and other medical resources. The home base care program that we visited drew volunteers from the community to care for families with sick people. Some care supporters commented that they volunteered their time to work with home based care organizations so that they learn to take better care of their own families. Because training sessions occurred on a weekly basis throughout the volunteer’s 7 tenure, each volunteer received ongoing training. The volunteers seemed to value this time of learning. These weekly sessions are also constructive, as it serves as an opportunity for community workers to share their experiences with each other and to build a sense of camaraderie. In current home base care programs, there is a desire for better communication technologies between care supporters, rotating nurses, and families. If a patient is very sick, the care supporter must travel back to the central clinic to find the whereabouts of the nurse, and then bring him or her back to the patient’s house. Future technology implementation considerations should address these communication needs. 8 4.0 Design Choices/Recommendations The following sections detail many of our decisions that we have made throughout the term. We feel that the design of an electronic patient tracking system can be broken down into several different aspects that can be treated, for the most part as independent. While in the final design, the components are interdependent, in the following sections each aspect is being addressed independently. 4.1 Information Content Requirements In the development of the paper forms, it is necessary to evaluate what data are necessary to collect in order to facilitate the following: 1) Providing comprehensive patient care 2) Understanding the demographics of the patient population 3) Tracking the delivery of program services 4) Assisting caregivers in doing their jobs In order to develop the content for the forms, I (Samantha) looked at somewhat similar forms from CIDRZ (Center for Infectious Disease Research in Zambia). In addition, Partners In Health’s Guide to the Community-Based Treatment of HIV in Resource-Poor Settings provided specific examples of how to assess socioeconomic history. Lastly, I drew upon my own experience in medicine, as medical evaluations are done in a systematic manner. The content reflects this standardization, and this standardization is essential as it facilitates communication with other caregivers. The full content of the forms for the CHART prototype are in Appendix B. Please note that while the paper forms often have free text entry, the full content, as shown in Appendix B, includes options for list boxes/check boxes etc. In a future version of the system, these features may be used to ease data entry. Moreover, at some point, if form completion is done on a PDA or computer (and not on paper), then this process could be streamlined by using these features. Having list boxes and check boxes also provides for greater ease in generating certain types of reports – as spelling mistakes (for example, of certain opportunistic infections) may hinder proper assessment. Below is a summary of each form: Initial History and Physical This form will be used when adding a patient to the POL program. It includes full demographic information in addition to a comprehensive medical, social, and family history, physical exam, assessment and plan. 9 Nurse A nurse will use this form during her periodic patient visits. This form includes a comprehensive medical evaluation, assessment and plan. Community Nursing Assistant (CNA) A CNA will use this form during her weekly (or more often if necessary) visit to a patient. It is similar to the nurse form but is somewhat simpler as CNAs have more regular contact with a patient. Family Care Giver (FCG) The FCG form is a weekly diary of patient symptoms and treatments given. When a CNA does her weekly patient visit, the FCG will present this form as a review of the week’s symptomatology. The FCG and CNA can then review the clinical situation and determine a plan for the coming week (which will be documented on the CNA form). Reference Partners In Health. The PIH Guide to the Community-Based Treatment of HIV in Resource- Poor Settings. Boston: Partners In Health, 2004. A PDF file of this book is also available at www.pih.org. 10 4.2 Paper Forms While designing the paper forms, considerations were made for both data entry, ease of use, and visual cohesion with the graphical interface for the data entry side of the software system. We determined that our goal was to design paper forms for an initial history and physical, the family caregiver, community nursing assistant, and nurse. Ideally, the forms would be completed and would be ready for use, but the reality of the development of the paper forms was slightly different. Working with POL employees in Zambia, our form generation would be a suggestion for possible use. Within the next month, completion of final forms with the approval of POL will enable form use in the field. Because of the need to design paper forms and a graphical user interface concurrently, the design process for the forms was piecemeal. The Initial History and Physical form was designed as the initial record of a patient within the organization. A patient, after being admitted to the organization, would be visited by a nurse who would fill out the paper form. Form content included past history as well as a physical performed by the nurse. The information on this form is taken once and entered into the database by a data entry employee. The placement of fields on the paper form was generally replicated on the graphical end of server to allow for ease of use for transcribing information from paper to screen. Designing a family caregiver (FCG) form required the use of icons for symptom recognition and treatment. Many FCGs are not literate and would be unable to use a weekly checklist that does not use icons. The chart is designed so that daily symptoms can be recorded in simple check boxes. Graphics, taken from a current iconic-based medical form in Zambia, show the symptom and treatment for things such as fever, diarrhea and pain. The graphics currently shown on the form are in use by the organization, but will be modified as form content is approved and altered through field-testing and use. This weekly form will be taken by the community nursing assistant (CNA) during their weekly visit and returned to the hospice, where the central server will be located. The possibility of creating the FCG form on the reverse side of the nursing assistant form would allow for less paper transmission to the server, but may not be possible because of the amount of informational fields required. The CNA and nurse forms are similar and intended to be simple for the users. Check boxes are used as often as possible to facilitate shorter time expenditures that could benefit the patient. Allowing CNAs, nurses and FCG to spend more time on care and less on tracking symptoms and treatments allows for improved overall patient care. We tried to create a bold graphical interface that would allow for more interaction with the patient and less confusion with information gathering. Because our data entry on the prototype is text only, some fields on our current paper forms are text entry. Later forms will include more options for circling specific text to minimize free-hand text entry, as well as more options for check boxes. Currently the content is still being tested in the field and although much of the necessary data is known, free text entry allows for flexibility in content needs on behalf of the organization. Iconography, bold graphical design, and 11 paralleled entry with the server allow for ease of use for caregivers as well as preservation of patient data and ease of data entry into the database. Included in Appendix B are three versions of the graphical paper forms. The third version was created using a PDF form creator and will be the final prototype for the creation of all four forms (the initial history and physical form has been finalized in this format). 12 4.3 Electronic Data Entry Technology Design Details Overview CHART was built to be easily maintained, portable, and scaleable. We decided to create a database system with a thin client (web interface) in order to facilitate the expansion of several users on a network of computers and also to minimize requirements on local computers. Computers need only an Internet browser to access the CHART program. There is one central repository that stores all data. This central server must have webserver capabilities so that other users on the network can access the database. A personal webserver is sufficient for a small network of users or standalone usage. Front End The electronic forms used for the CHART program were written in Active Server Pages (ASP). This technology was chosen because it allows full control over the appearance of data displayed on the front end. Using HTML, the developer can easily add icons and figures to the forms. It is important for this software to be as user friendly and low cost as possible, therefore we rejected using propriety software such as Oracle or Microsoft Access for form creation. The layout of the electronic forms mirror the actual paper forms that health workers will be using. This is to facilitate accurate data transfer and entry. However, any changes made to the paper forms must also be reflected on the electronic forms. There are four points of data entry into the system: Initial Assessment form, Family Care Giver form, Community Nursing Assistant form, and the Nurse Form. These forms directly relate to the database tables that store information from each form. Demographical information collected from the initial assessment of the patient is stored in the DEMOG table and medical history information is stored in the NURSE table. The Community Nursing Assistant form and the Nurse Form enter data into the CNA and Nurse table. Data entry fields are text fields. Users can tab through the editable fields to navigate the electronic forms or use the mouse. Each form has a “Submit” button or “Go Back to Start Page” which allows the user to return to the Main menu. Users must scroll down to view and enter all fields as each form collects about 100 data points. 13 Figure 4. Nurse Form 14 Database The front end is connected to a Microsoft Access database. MS Access allows for convenient installation, maintenance, and compression of the database. It also allows for data manipulation in Visual Basic (VB) and Structured Query Language (SQL) code, therefore future maintenance of CHART will require programmers to be familiar with three widely used technologies: ASP, VB, SQL. The database is conveniently stored in one file “POL.mdb.” Therefore, replication and backup storage of the database requires the user to copy the file and put it on an alternative storage device. Before data is backed up, the “Compact” utility should be invoked to minimize file size. The database is comprised of four tables, each corresponding to the data collected on a physical form. The DEMOG table stores information relevant to the initial assessment of the patient, including basic demographics, household information, and food consumption. The FAMCAREGIVER table stores data collected from the family member caring for the patient. Information such as medication, side effects, and sickness will be maintained on a weekly basis. The CNA table stores data that is collected by the CNA on weekly visits. Information such as vital signs, medication, drug adherence, and general examination statistics are maintained on a weekly basis. The NURSE table stores data similar to the Community Nursing Assistant table, with the addition of immunizations and specific information on the review of system performed during the physical assessment of the patient. Each patient in the program has a unique patient ID. Records from the four tables are joined by the Patient ID. Next steps • The first prototype is developed with no type checking for characters in input fields. Where relevant, fields must be checked for appropriate entry of dates, numbers, and text. • There are predetermined data sets that may be inputted for a specific data point. For these fields, a listbox should store all choices of data. For example, HIV/AIDS Clinical Assessment Stage could have a listbox with stage names instead of using a free text box. This will eliminate data entry errors. • The type of data collected from the family care giver must be established. It is unclear if it would be most helpful to collect occurrences of sickness or simply dates of occurrences. It is also unclear if the data collected from the Family Care Giver form will create a bottleneck in data entry. These considerations must be addressed on the next iteration of the Family Care Giver electronic form. 15 • Due to time constraints, electronic and paper forms were made in parallel. Because these forms must mirror each other, icons used in the paper forms were not incorporated into the electronic forms. These images should be added in the next build. • The tables in the database are not related to each other. For simplicity, all records may be retrieved by the unique identifier of the Patient ID. In the next build, relationships between tables should be explicitly established as such: Demog CNA One to Many Demog FamCareGiver One to Many Demog Nurse One to Many Figure 5. Relational view of database 16 4.4 Report Generation Ultimately, for an electronic patient tracking system to be useful, there must be meaningful mechanisms by which to retrieve data from the system. To fully realize the potential of CHART, therefore, it is necessary to generate reports from the stored data. Report generation within the context of CHART will help POL track trends in the individual patient, the patient population, and the caregivers. It is an invaluable tool for assessment of program’s work and thereby essential for improvement of patient care in addition to program refinement and future expansion. We have created a list of vital report questions that should be asked of the database. These questions can be found in Appendix C. There are three primary types of reports that can be generated by the systems: Basic Patient Status Reports, Reports Regarding Individual Patient Health, and Aggregate Reports considering a subsection of the patients in the program. In our prototype, all reports are determined at build time and there is no faculty to build new types of reports from the user’s front end. This is an advanced feature that may be desired in future versions. 4.4.1 Basic Patient Status Reports Basic Patient Status Reports provide an instant snapshot of a patient’s current medical status. These reports are designed to give the individual caregiver a tool by which to better assess a patient’s immediate health. In addition, basic patient status reports can be used, for example, to see a patient’s current diagnoses or medications. Finally, basic patient status reports display necessary demographic information including address, date of birth, and the assigned caregivers. In our prototype, the Basic Patient Status Report is the portal for all information on an individual patient. Links to additional reports are provided from this page. Users can reach the Basic Patient Status Report for an individual patient by browsing all patients in the program or by searching for an individual patient by patient ID or name. In future versions, more search fields will likely be provided. In addition, as the number of patients in the database grows, more advanced search methods will have to be designed. In order to display Basic Patient Status Reports, the prototype we have developed queries all of the tables in the database to gather the most recent information. To find the latest information on a patient, the software creates a list of all visits in the database associated with the patient. The program then sorts these visits by date and takes information from the latest visit. In this first version, information in the visit entries is assumed to be correct and the program nurse and community nursing assistants are given equal priority. In the future, it may be desirable to assign priorities to different caregivers, in accordance with their degrees of training. This prioritization is not included in the current prototype. A basic patient status report is shown in Figure 1. 17 Figure 1 4.4.2 Reports Regarding Individual Patient Health Reports regarding individual patient health are designed to answer specific questions about a patient’s health over time. These reports can be used to evaluate trends in a patient’s health and can also help a care worker assess potential future treatment options. Questions such as “What is the “estimated adherence rate” to ARVs for a patient over time?” or “What percentage of days in the past month has a patient had diarrhea?” are generated in the software by searching through the patient’s most recent visits and querying individual pieces of information. Some questions focus on a subset of information from the patient status report such as “What vaccinations is a patient missing?” In these instances, all of the information is located on basic patient status reports but is not highlighted. For example, a patient status report will not list a vaccination if a patient has not had it. To determine which vaccinations a patient is missing by viewing the patient status report, the nurse would have to know what vaccinations a patient ‘should have had’ in order to determine what vaccinations the patient is missing. In contrast, when generating a report regarding individual patient health, the software compares a predetermined list of possible vaccinations with a patient’s status and highlights those specific vaccinations the patient is missing. These reports remove some of the burden on caregivers and represent a very basic level of decision support. 18 Some of the reports regarding individual patient health simply provide a more extensive patient history than is listed on the Basic Patient Status Report (e.g. a list of all the CNA visits associated with a patient). In our prototype, links to reports regarding individual patient health are provided on each patient’s Basic Patient Status Report. Depending on the specific report, the data is displayed as either a line graph or bar chart. In future versions, the reports should be formatted on the screen in such as a way to allow easy printing of hard copies. A sample Report Regarding Individual Patient Health is shown in Figure 2. Figure 2 4.4.3 Aggregate Data Reports The third type of report that can be generated by CHART are reports displaying aggregate data. These reports either display data on all patients or a subset of all patients enrolled in the program. Aggregate Data Reports are important for many different uses including: Daily Administration, Donor Assessment and Promotion, Impact Assessment, and Internal Status Updates Aggregate Data Reports can be useful for the program management to assist with the daily administration of POL. These reports will help POL manage its resources such as availability of medications. For example, the report that displays ‘the names and amounts of medications that were not given, but needed in one month’ will allow the program to assess its medication needs and order appropriate quantities for future months. Aggregate reports for management will be vital in improving the efficiency of the program and may eliminate some overhead costs. Fewer fulltime staff members will be needed at the administrative level. Aggregate Data Reports can also help donors properly assess the program. These reports are designed to give data that can be used in promoting the program to outside organizations. The reports provide an accurate picture of the patient population in addition to demonstrating program efficacy. The reports are an important tool to attract funding and outside support. In 19 addition, these reports can be used to assess the impact of the POL model of care. The reports can be used to distinguish POL from other home-based care programs. Finally, Aggregate Data Reports can be used to create periodic internal status updates. The reports can show trends across the patient population and help identify areas of the program that might need more attention or resources. In our prototype, Aggregate Data Reports generally query for information throughout all tables in the database. Each patient’s record is searched individually in turn for specific information. This information is then sorted and tallied to produce final reports. A large amount of processing is required to generate Aggregate Data Reports using the current data model. A data model that includes an additional ‘Patient Status Table’ may alleviate some of this complexity. However, this addition would require additional processing at the point of data entry. In future versions, the different options should be considered and the most efficient solution selected. The specific backend implementation should not change the type and structure of information available to the end user. A typical Aggregate Data Report is displayed in Figure 3. Figure 3 The current prototype demonstrates the functionality of a few, selected report questions. This is intended only to provide a sampling of what can be done upon incorporation of all of the report questions listed in Appendix C. . . 20 4.5 Clinical Decision Support While CHART is still a prototype, it is necessary to evaluate other features that could be incorporated into a future version of the system. One specific area of development that I (Samantha) researched is the potential for inclusion of clinical decision support (CDS). Conceived of broadly, I am defining CDS as ways in which the computer or PDA may help a clinician make decisions regarding care giving. In an ideal setting, CDS may help improve patient care and health outcomes in the following manners: • Improved prescribing practices • Reduced rate of medical errors resulting in improved patient safety • Improved health care efficiency • Improved delivery of preventative health care • Improved adherence to health care standards1 Unfortunately, the reality is that CDS may not achieve such lofty goals. While provider performance may improve, it does not necessarily correlate with improved patient care.2 At its worst, CDS may cause the system to become more cumbersome to use. Worse yet, it may introduce new error into the system.3 In this report, I will examine some of the specific forms of CDS and review a few general features of an ideal CDS system. Then, I will examine the sorts of clinical decisions that will be being made in the POL home based care system. Lastly, I will conclude by providing some recommendations for CDS features that would be useful to incorporate into future versions of CHART. In order to further round out the perspective I received from the literature, I talked with three experts on CDS in Boston: Peter Szolovits, PhD (MIT), Warner Slack, MD (Beth Israel Deaconess Medical Center), and Harry DeMonaco (Massachusetts General Hospital). Types of Clinical Decision Support4 There are countless types of CDS. Below, I will highlight a few and provide examples of how they may be useful in the general care giving setting. 1 Kawamoto, K. and Houlihan, C et al. Improving Clinical Practice Using Clinical Decision Support Systems: A Systematic Review of Trials to Identify Features Critical to Success. BMJ. 2005;330:765-8. 2 Garg, A and Adhikari, N et al. Effects of Computerized Clinical Decision Support Systems on Practitioner Performance and Patient Outcomes: A Systematic Review. JAMA. 2005;293:1223-1238. 3 Koppel, R and Metlay, J et al. Role of Computerized Physician Order Entry Systems in Facilitating Medication Errors. JAMA. 2005;293:1197-1203. 4 Ramnarayan, P and Britto, J. Paediatric Clinical Decision Support Systems. Archives of Disease in Childhood. 2002;87:361-362. 21 Rule-Based Systems In medicine, rule-based systems are collections of “if-then” statements that together are used to provide clinical notifications. There are several clinical situations in which rule-based systems may be used. Below are a few examples: Reminders (less urgent notification) 56 • Preventative Care o At the point of care, the system can remind a clinician if a patient is due for preventative care. Depending on what diagnoses a patient has, the clinician is alerted of a specific set of exams for which the patient should be scheduled. • Vaccination Reminders o This is similar to above, but particularly pertinent in a pediatric population. At the point of care, the system can remind a clinician if a patient is due for a vaccination. • Medicine Choice o At the point of care, if a medication is input (via an ordering system or otherwise), the computer provides feedback regarding an alternative choice. For example, if a clinician attempts to prescribe a name-brand drug, an alternative generic may be suggested. Alerts (urgent notification) • Drug-Drug Interactions o At the point of care, a clinician is notified if medicine prescribed interferes with other medications the patient is taking. • Drug-Allergy Interactions o At the point of care, a clinician is notified if the medicine prescribed is contraindicated due to an allergy. • Drug-Diagnosis Interactions o At the point of care, a clinician is notified if he has prescribed an inappropriate medication for a certain diagnosis. • Drug Adjustment o At the point of care, a clinician is notified if the medicine prescribed needs to be adjusted (and how) due to factors including: altered hepatic and renal function, altered metabolism due to concurrent administration of other medicines, and weight (of particular importance in pediatric populations). • Laboratory Abnormalities (Data Tags) o Data tags involve flagging values as being abnormal/normal. Values out of range may be flagged as “H” (high) or “L” (low). The flag also may graphically show what degree of abnormality exists. For example: a flag may be red if there is significant cause for concern. 5 Dexter, P and Perkins, S. A Computerized Reminder System to Increase the Use of Preventative Care for Hospitalized Patients. NEJM. 2001;345:965-970. 6 Safran, C and Rind, C et al. Guidelines for Management of HIV Infection with Computer-based Patient’s Record. The Lancet. 1995;346:341-346. 22 Reference Clinical decision support may also include computer-based references. Such references provide easy access to disease pathophysiology, diagnosis, and treatment. They are subscriptions services and are continually updated. Below are some popular references that are widely used in the Boston hospitals. It is essential to keep in mind that these references are directed toward clinicians who are very familiar with medical terminology. PDA Focused: Pepid and Epocrates Certain references have been made for PDAs such as Pepid (http://www.pepid.com/) and Epocrates (http://www2.epocrates.com/). Among many features, these references have succinct reviews of key clinical presentations and diagnoses in addition to medical calculators, drug information, and drug interaction comparisons. These programs are very useful as a quick reference during the individual patient encounter, as they clearly outline the tools necessary for diagnosis and Courtesy of PEPID, LLC. Used with permission. www.pepidonline.com treatment. Pepid and Epocrates have both been developed with a focus on medicine that is practiced in the developed world. Some of the lab tests, imaging, and treatments suggested are not available outside of tertiary care medical centers. Above, is a screen shot from the computer-based version of Pepid. The format of the PDA program is quite similar. One may search a symptom, disease, or treatment by keyword. A particularly helpful feature of Pepid is an integrated drug calculator (see below). One does not need to leave a medicine entry in order to calculate a drug’s proper dosage. Courtesy of PEPID, LLC. Used with permission. www.pepidonline.com 23 Up-To-Date While Pepid and Epocrates are excellent references, they are not detailed. Both programs are intended for use at the point of care and not as a sole reference on a disease process. There is a significantly more comprehensive online reference called Up-To-Date (www.uptodate.com). Up-To-Date has over 70,000 pages of text that has been developed specifically for this service (see below). There are usually also several images and graphics that accompany each entry, and the program has countless “patient information” entries. In addition, it is peer-reviewed and updated every four months. Usage of Up-To-Date is dependent on a connection to the Internet. While the program is best used on a computer, the company also has created a version for Pocket PC. Image removed for copyright reasons. ___________________ Screenshot of Up-To-Date (http://www.uptodate.com). Dermatological Atlases While Up-To Date also has images, an extremely useful online clinical reference is a dermatological atlas. Depending on the individual dermatological atlas, one may look up different skin pathology via the name of the disease (if known), body site, lesion type etc. A couple of popular dermatological atlases that are free include: http://dermis.multimedica.de/index_e.htm and http://dermatlas.med.jhmi.edu/derm/. Such atlases are very useful not only in diagnosing skin lesions but also in teaching. 24 “Expert” Systems Expert systems include neural networks and Bayesian systems. The user inputs demographic information in addition to data from the medical history and physical exam. The system then constructs a differential diagnosis (all the possible diagnoses that the clinician should consider). Two expert systems that require subscriptions include Isabel (http://www.isabelhealthcare.com/) and GIDEON (http://www.gideononline.com/). On the right, are two screen shots of GIDEON, a program developed to Courtesy of GIDEON Informatics, Inc. Used with permission. assist in diagnosis of infectious diseases. In the first screen, the clinician inputs patient data, including symptoms and signs in addition to clinical history. On the second screen, GIDEON produces a differential diagnosis, with probabilities of each diagnosis considered. While such systems are quite interesting, the experts interviewed emphasized that such systems are best used as teaching tools and components of clinical care. “Expert” systems should not replace the clinician. Courtesy of GIDEON Informatics, Inc. Used with permission. www.gideononline.com 25 Therapeutic Decision Assistance Therapeutic decision assistance helps the clinician decide a course of action once a diagnosis exists. The system may provide a series of therapeutic options that the clinician may consider. Or alternatively, it may suggest that specific actions be taken. The degree of Image removed for copyright reasons. forthrightness may change based on the severity of the diagnosis Source: Bates, D and Gawande, A. "Improving Safety with Information Technology." NEJM 348 (2003): 2526-34. An example of such a situation may be seen on the right. The patient has a dangerously low potassium level. And the CDS system recommends taking certain clinical actions to correct this life- threatening problem. The Ideal Clinical Decision Support System Integration into Workflow In their review article in the British Medical Journal, Kawamoto and Houlihan et al emphasize that there are four characteristics associated with a CDS system’s capacity to improve clinical practice: 1. Decision support provided seamlessly in clinician workflow 2. Decision support delivered at the point that a decision is made 3. Recommendations provided that the clinician can act on 4. Computer based The authors assert that all of four of the features are necessary to minimize the effort required to access CDS and act on the recommendations.7 The notion of seamless integration of CDS into clinician workflow was echoed not only throughout the literature,8910 but also by the decision support experts interviewed in Boston. If a practitioner needs to exert extra effort to use decision support, it is more unlikely that he will use it. More detailed examples of ways that CDS may be seamlessly integrated into workflow include the use of “forcing functions” and “corollary orders.” Forcing functions restrict the options a physician has in his orders. For example: When ordering a medication on a computer, a clinician will be only given physiologically appropriate options – thereby avoiding overdosing. “Corollary orders” are orders that are automatically suggested when others are made. For 7 Kawamoto and Houlihan 2005. 8 Handler, J and Feied C et al. Computerized Physician Order Entry and Online Decision Support. Academic Emergency Medicine. 2004;11:1135-1141. 9 James, B. Making It Easy to Do It Right. NEJM. 2001;345:991-992. 10 Garg and Adhikari 2005. 26 example, if a clinician makes an order for an elderly patient to be on bed rest, a corollary order could be suggested to place the patient on deep vein thrombosis (blood clot) prophylaxis.11 Notification Selectivity As reviewed, CDS is often used in the form of rule-based systems that Image removed for copyright reasons. provide notifications. In his Source: Bates, D and Gawande, A. "Improving Safety with Information editorial in the New England Technology." NEJM 348 (2003): 2526-34. Journal of Medicine, Durieux emphasizes that “if too many alerts or irrelevant alerts are provided by computers, the clinician will ignore them and try to bypass them.”12 A way to address this potentially very serious problem is, as explained by Harry DeMonaco, the head of CDS at MGH, a three-tiered alert system. In such a system, the level of severity of the alert is clearly communicated to a practitioner. If an alert of higher severity is ignored, many prompts will question the provider’s actions and ask him to reconsider his order. Above, is an alert from MGH’s computer system. Notice the use of the color red and the skull and cross-bones to emphasize that ordering Nafcillin (an antibiotic) is unquestionably contraindicated in this patient due to a prior incident of anaphylaxis. Keeping Current Both the literature and experts have also emphasized that CDS systems need to be continually updated. The evidence base of medicine is constantly changing, and it is necessary that a CDS system reflect this reality.1314 References like Pepid, Epocrates, and Up-To-Date are continually revised. But, CDS systems that are customized to a particular care environment need to be maintained so that they stay current also. 11 Bates, D and Gawande, A. Improving Safety with Information Technology. NEJM. 2003; 348:2526-34. 12 Diurieuz, P. Electronic Medical Alerts – So Simple, So Complex. NEJM. 2005;352: pg. 1035. 13 Purcell, G. What Makes a Good Clinical Decision Support System. BMJ. 2005;330:740-741. 14 Garg and Adhikari 2005. 27 Localizing Clinical Decision Support In order to create a CDSS that is appropriate for the clinical environment it is serving, it is necessary to identify what services will be provided and what decisions are going to be made on each level of the healthcare hierarchy. The decisions being made dictate what type of support is useful. Clearly, in tertiary care hospitals such as those in Boston, the clinical decisions being made by nurses and physicians will differ markedly from the decisions being made by family caregivers, community nursing assistants, and nurses in a home-based care program in Lusaka. The literature on CDS emphasizes the importance of evaluating the risks and benefits of incorporating such as system before development and implementation.15 Below, I will review the sorts of responsibilities of (and resultant decisions being made by) the Power of Love (POL) caregivers. Since POL is just initiating care in Lusaka, this is currently an estimate. Family Care Giver (FCG) The FCG is directly responsible for daily patient care. She is not expected to be literate and will have been trained for a few days in the basics of caring for a pediatric HIV patient. She should be able to recognize basic changes in wellbeing (vomiting, diarrhea, signs of pain) and be able to respond with simple curative and palliative measures. These include giving analgesics for patients in pain or providing oral re-hydration solution to those who are dehydrated. FCGs should also be able to perform basic wound care. If the clinical concern escalates beyond this basic level, the FCG will need assistance from the CNA or nurse. Community Nursing Assistant (CNA) On the next level of the clinical hierarchy is the CNA. CNAs are expected to be literate, high school educated, and will have gone through an intensive training that lasts a few months. CNAs should have the capacity to make very basic diagnoses common in the pediatric HIV population (e.g. dehydration, oral candidiasis (“thrush”), conjunctivitis (“pink eye”) etc.). They should have a small selection of medications for such common ailments, including antibiotics, anti-fungals, and topical corticosteroids. They should also be able to teach family caregivers how they can appropriately perform their duties. In addition, they should be able to recognize when the clinical situation is not within the scope of their training and triage care to the program nurse. Program Nurse Currently, the program nurse is the provider with the most clinical training in the POL system. The nurse should be able to recognize and diagnose slightly more complex diseases that may occur in the pediatric HIV population. Examples of such diagnoses include pneumonia, appendicitis, and herpes simplex virus outbreak. The nurse should have a more significant selection of medications (although probably still quite small due to limited resources) that he can dispense. While the CNA will likely have little familiarity with medical jargon, the program nurse should be familiar with such terminology. The scope of care the nurse can give is still quite limited. If the patient needs lab tests or imaging or more intensive care, the patient will need to be seen at a government clinic or the hospital. 15 Handler and Feied 2004. 28 Recommendations for POL’s Incorporation of CDS From talking to experts on CDS in Boston, one theme emerged over and over again: “keep it simple.” In their experience, the most efficacious forms of CDS have been ones that are unquestionably simplistic. In the spirit of this statement, I have the following recommendations for the incorporation of CDS into CHART. Rule-Based Systems There is much potential for rule-based systems to assist with provider performance and patient care. The following recommendations are divided into notifications that provide immediate feedback and ones that are more long-term. Immediate Feedback at Point of Care Vaccinations Vaccination completion helps individuals avoid unwarranted morbidity/mortality in addition to being a key component of public health promotion. Upon loading a patient’s file on a PDA or computer, reminders could prompt a clinician with a patient’s missing vaccination (relative to age). Drug Interactions In that pediatric HIV patients may be on several medications, a rule-based system that evaluates for interactions (drug-drug, drug-allergy, drug-diagnosis etc.) is invaluable. The patient’s current medications and allergies and diagnoses should be stored in the system, and when a new medication is added, the system should check if there are any contraindications to the introduction of the new drug. Longer-term Feedback Disease Monitoring Rule-based systems may be used to monitor disease progression and patient wellbeing. Certain features that I see as being useful are tracking patient weights and heights and having an alert when a patient is falling off the growth curve by a certain percentage. In addition, there should be tracking of CD4 counts, with alerts when the levels fall below 200 or 350 cells/mcL (whichever is standard in Zambia to begin Pneumocystis carinii pneumonia prophylaxis with Bactrim). Lastly, there should be tracking of compliance to ARV (anti-retroviral) and DOT (directly observed therapy for TB) treatment. Rule-based systems may be used to alert clinicians when a patient’s adherence falls below a certain level. Vaccinations A rule-based system may also be used to generate a monthly list of those patients who are due for vaccinations. This may assist in a prompt and directed immunization effort. 29 References As reviewed previously, both the FCGs and CNAs will likely have little familiarity with medical jargon. Thus, even though services like Pepid, Epocrates and Up-To-Date are incredibly valuable repositories of information, they are likely to be of limited usefulness to the majority of caregivers in the POL system. Depending on the nurse’s clinical background, he may find these resources more or less helpful in his clinical practice. I recommend having him try out the different programs and providing feedback on its usefulness. I think a dermatological atlas is an invaluable resource for both instruction and care on all levels of the POL system. As access to several dermatological atlases are free online, I recommend that instruction be given in how to use the atlas. Moreover, if a digital camera is accessible, the caregivers can compare photos taken of skin pathology with photos that are on the online atlas. This process will both assist in education and diagnosis. In addition to the above, I believe that the CNAs would benefit from reference material easily accessible on PDAs or computers. This material should address the specific clinical skills that a CNA is expected to know and have. Perhaps, it could be a condensed and searchable version of the training manual that is currently being made. The reference should have limited amounts of text and focus on directed information. A few examples of information that could be in such a reference include: • Key signs of dehydration and how to fix re-hydration solution • Proper care of bed-bound patient, including care of skin ulcers/sores • Key points when counseling about HIV transmission • Key points of pain management • Key points of clean water and sanitation • What is “thrush”? And how do you treat it? Clearly, two downsides to such an approach are 1) the need to write the content and build the program and 2) the responsibility of keeping the information updated. To the later point, I anticipate that vast majority of the CNAs’ skills are not dependent on the latest in evidence- based medicine. Thus, I do not think that updating will be an arduous process that needs to continually take place. As the FCGs are not anticipated to have access to computers or PDAs, I do not envision any CDS being directed toward their specific clinical needs. “Expert” Systems While expert systems are excellent teaching tools, I do not anticipate they will assist with the basic care giving that is taking place in the POL care system. Therapeutic Decision Assistance I think the ideas at the foundation of therapeutic decision assistance may be incorporated into the homemade reference CNAs detailed above. 30 In conclusion, it is incredibly exciting to consider the potential of incorporating clinical decision support in a future version of CHART. While the involvement of technology in clinical decision-making is alluring, it is essential to evaluate what decisions are being made on each level of the clinical hierarchy and how involvement of technology can potentially hinder and help clinician performance and, ultimately, patient care. References Bates, D and Gawande, A. Improving Safety with Information Technology. NEJM. 2003; 348:2526-34. Cimino, J and Bakken, S. Personal Digital Educators. NEJM. 2005;352:860-862. Dexter, P and Perkins, S. A Computerized Reminder System to Increase the Use of Preventative Care for Hospitalized Patients. NEJM. 2001;345:965-970. Diurieuz, P. Electronic Medical Alerts – So Simple, So Complex. NEJM. 2005;352: pg. 1034-1036. Handler, J and Feied C et al. Computerized Physician Order Entry and Online Decision Support. Academic Emergency Medicine. 2004;11:1135-1141. James, B. Making It Easy to Do It Right. NEJM. 2001;345:991-992. Kawamoto, K. and Houlihan, C et al. Improving Clinical Practice Using Clinical Decision Support Systems: A Systematic Review of Trials to Identify Features Critical to Success. BMJ. 2005;330:765-8. Koppel, R and Metlay, J et al. Role of Computerized Physician Order Entry Systems in Facilitating Medication Errors. JAMA. 2005;293:1197-1203. Purcell, G. What Makes a Good Clinical Decision Support System. BMJ. 2005;330:740-741. Ramnarayan, P and Britto, J. Paediatric Clinical Decision Support Systems. Archives of Disease in Childhood. 2002;87:361-362. Safran, C and Rind, C et al. Guidelines for Management of HIV Infection with Computer-based Patient’s Record. The Lancet. 1995;346:341-346. Wears, R and Berg, M. Computer Technology and Clinical Work: Still Waiting for Godot. JAMA. 2055;293:1261-1263. http://dermatlas.med.jhmi.edu/derm/. http://dermis.multimedica.de/index_e.htm http://www2.epocrates.com/ http://www.gideononline.com/ http://www.isabelhealthcare.com/ http://www.pepidonline.com/ http://www.uptodate.com/ Interviews with: Peter Szolovits, PhD (MIT), Warner Slack, MD (Beth Israel Deaconess Medical Center), and Harry DeMonaco (Massachusetts General Hospital). 31 5.0 Lessons Learned CHART has evolved substantially since the beginning of the semester. Initially, we were anticipating that a group of Course 6 students would be doing the technological development of the CHART prototype. Unfortunately, due to the realities of life at MIT, such a prototype was not done in time for us to collaborate with this group of students. And thus, it was at the point of realizing this reality that we decided to build our own piece of software. It is a shame that we recognized this fact later on in the semester, as our prototype would be much more advanced had we been working on it all spring. We also have learned several lessons regarding designing a prototype for an organization that is just starting up operation itself. Over the course of the semester, it has become apparent that the roles of those involved at POL continue to be redefined and refined. The information being collected and the services that will be given are still being determined. As a result, there has not been a clear vision regarding the specific needs of a patient tracking system. And while this is indeed an amazing opportunity to become involved in an organization on the ground level, we spent a significant amount of time this semester achieving a basic understanding of the both the system and stakeholders involved. Clearly, as the program continues evolve, the roles of those involved and the services that POL provides will become further defined. We look forward to continually being involved in the evolution of this process. 6.0 Conclusion/Future Work The result of our work this term is a prototype version of the software displaying basic data entry and report generation functionality. The prototype is designed to give a glimpse of what the CHART system is capable of in terms of the management of patient information. The next step in the development of CHART is to take the prototype into the field and use it in discussions aimed at building a detailed, complete software design specification that can be used to build a more robust, scalable final version of the software. Nadja and Tim will both be in Zambia this summer working to ensure the CHART system continues to make progress. Tim’s role in Zambia this summer will focus on designing the detailed specifications needed in order to complete the software. The exact nature of future development is still being determined. However, it is likely that once a detailed specification is written, the final software development will be contracted to a development firm. The prototype we have built will be a vital tool to be used during the process of generating the final design specifications 32 Appendix A: Basic Health Statistics in Zambia Category Date Value Source Population July 2004 10.4 million CIA Adult Literacy 2002 80% of those 15 years + HNP Age Breakdown 2004 (estimate) 0-14 years: 46.1% CIA 15-64 years: 51.1% 65 years +: 2.8% Average Annual Population 1990-2003 2.2% HNP Growth Rate Birth Rate 2004 (estimate) 38.99 births/1,000 CIA Death Rate 2004 (estimate) 24.35 deaths/1,000 CIA Life Expectancy @ Birth 2004 (estimate) Male: 35.19 years CIA Female: 35.17 years Infant Mortality 2004 (estimate) 98.4 deaths/1,000 live births CIA Under-5 Mortality Rate 2002 182/1,000 children HNP Child Malnutrition (under 2001-2002 Severe: 28% Studies in 5 years old) Moderate/Severe: 46.8% Family Planning Access To Improved Water 64% of population Zambia at a Source Glance Median Age of First Birth 2001-2002 18.7 years old Studies in (of women aged 25-49) Family Planning Maternal Mortality Ratio 2000 (modeled 750 deaths/100,000 live births HNP estimate) Total Fertility Rate 2004 (estimate) 5.14 children born/woman CIA Adolescent Fertility Rate 2002 129/1,000 women aged 15-19 HNP Contraceptive Prevalence 1996 25.9% of women, aged 15-49 HNP Rate 33 Category Date Value Source Rate of HIV/AIDS Infection 2003 13.5-20.0% of adult UNAIDS population (aged 15-49) Adults Infected with 2003 680,000-1,000,000 (aged 15- UNAIDS HIV/AIDS 49) Children Infected with 2003 56,000-130,000 UNAIDS HIV/AIDS Urban HIV/AIDS Infection Women: 26.4% HHS/CDC Rate Men: 19.2% Rural HIV/AIDS Infection Women: 12.4% HHS/CDC Rate Men: 8.9% TB Incidence 2002 668/100,000 people HNP TB Death Rate 2002 68/100,000 people HNP Total Expenditure On 2001 5.7% of GDP WHOSIS Health Per Capita Government 2001 27 International Dollars WHOSIS Expenditure on Health Per Capita Total 2001 52 International Dollars WHOSIS Expenditure on Health Endemic Infectious Diseases Malaria Dengue Typhoid Fever Cholera (Epidemics in Zambia in 1991, 1992, 1999, and 2003-2004) Vaccine Schedule BCG: Birth DTP: 6, 10, 14 weeks Measles: 9 months OPV: 6, 10, 14 weeks Tetanus Toxoid: CBAW (child bearing aged women); +1, +6 months; +1 year Vitamin A supplementation: 6 months Vaccines not included in immunization schedule: Hepatitis A Hepatitis B Haemophilus influenzae Type B (HiB) Mumps Rubella 34 References Cholera Epidemic Associated with Raw Vegetable – Lusaka, Zambia, 2003-2004. MMWR Weekly. 2004;53:783-786. CIA – The World Factbook – Zambia. http://www.cia.gov/cia/publications/factbook/. Last updated February 10, 2005. Web site accessed February 15, 2005. HHS/CDC Global AIDS Program (GAP) in Zambia – FY 2003 Fact Sheet. http://www.cdc.gov/. Last updated August 2004. Web site accessed February 15, 2005. UNAIDS/WHO Epidemiological Fact Sheet – 2004 Update – Zambia. http://www.who.int/GlobalAtlas/. Web site accessed February 15, 2005. WHO Statistical Information System (WHOSIS) – Zambia. http://www.who.int/en/. Web site accessed February 15, 2005. WHO Vaccines, Immunizations and Biologicals – Immunization Profile – Zambia. http://www.who.int/en/. Last updated September 2004. Web site accessed February 15, 2005. The World Bank – HNP (Health Nutrition & Population) at a Glance: Zambia http://www.worldbank.org/. Web site accessed February 15, 2005. The World Bank – Zambia at a Glance http://www.worldbank.org/. Last updated September 2004. Web site accessed February 15, 2005. Zambia 2001-2002: Results from the Demographic and Health Survey. Studies in Family Planning. September 2004; 35:212-216. 35 Appendix B: Form Content Initial History and Physical Exam Date (list boxes with months/days/years) Demographic Information Surname [Last name] (free text) Forename [First name] (free text) Assigned ID number (free text) Sex (female/male) Date of Birth (list boxes, months/days/years) Is Date of Birth an estimate? (yes/no) Age (number list boxes 0-36 months, 3-100 years, or just free text, if it makes it easier b/c of the months/years issue) Address (free text) Phone (free text; N/A) Zone (free text) Name of Family Caregiver (free text) Caregiver relationship to child (list box: mother/father/sibling/extended family/friend/other – please specify) Assigned Community Nursing Assistant (list box with names of all CNAs in the program) Name of Mother (free text) Name of Father (free text) Total number of people living in household (list box, 1-15) Estimated monthly income of household (list box <50,000/50,000-100,000/100,000- 200,000/200,000-500,000/>500,000) Kwacha) Does the patient practice a certain religion? (yes/no) If yes, (listbox: Christian/Muslim/Hindu/Indigenous beliefs/None/Other – please specify (free text)) Referred by (list box including the following organizations) • Matero Reference NHC • Matero Reference ARV clinic • Matero Anglican Church • Matero UCZ • Matero RCZ • Evangelical Lutheran Church Matero • Chunga Anglican Church • Emmasdale UCZ • Other – please specify (free text) 36 Specific Concerns Patient concerns? (yes/no) If yes, please specify (free text) Family caregiver concerns? (yes/no) If yes, please specify (free text) Past Medical History HIV/AIDS History Has patient been tested for HIV/AIDS? (yes/no) If so, when? (list box with months/years) When was HIV/AIDS diagnosed? (list box with months/years) Is the patient on ARVs? (yes/no) If yes, when were the ARVs started? (list box with months/years) Most recent CD4 count (list box, 0-2000/mcL) Most recent viral load (free text, units: viral copies) History of opportunistic infections? (yes/no/unknown) If yes, list box should contain (should be able to check several) • Candidiasis – bronchi, trachea, lungs • Candidiasis – esophageal • Cervical cancer, invasive • CMV retinitis • CMV disease (other than liver, spleen, or nodes) • CNS mass lesion – toxoplasmosis • Cryptosporidiosis, chronic intestinal • Encephalopathy (HIV related) • Endemic mycosis (coccidiomycosis, histoplasmosis) • Herpes Simplex Virus, chronic ulcer • Kaposi’s Sarcoma • Lymphoma • Mycobacterium avium compex (MAC) • Pneumocystis carinii pneumonia • Pneumonia, recurrent • Progressive multifocal leukoencephalopathy (PML) • Salmonella septicemia (non-typhoid) • Toxoplasmosis of brain • Tuberculosis – Extrapulmonary • Tuberculosis – Pulmonary • Wasting syndrome due to HIV • Other – please specify (free text) 37 TB History Has the patient been treated for TB? (yes/no/unknown) If yes, Was TB extrapulmonary? (yes/no/unknown) Was the TB multi-drug resistant? (yes/no/unknown) When was treatment completed? (list box with months/years) Treated with what drugs? (list box (should be able to check more than one)) • Isoniazid • Rifampin • Pyrazinamide • Ethambutol • Streptomycin • Unknown • Other – please specify (free text) History of Other Medical Illnesses (yes/no) If yes, listbox should contain • AIDS dementia complex • AIDS mania • Amebiasis • Anemia • Asthma • Bacterial vaginosis • Chronic Diarrhea • Chronic Pain • Community Acquired Pneumonia • Depression • Failure to thrive • Helicobacter Pylori • Hepatitis A • Hepatitis B • Hepatitis C • Hypertension • Immune Reconstitution Syndrome • Schistosomiasis • Malaria • Measles • Mumps • Rubella • Kidney stones • Pancreatitis • Persistent fever • Pertussis • Renal insufficiency 38 • Typhoid fever • Urinary tract infections, recurrent • Chronic renal failure • Varicella • Varicella zoster • Other – please specify (free text) Past Surgical History (yes/no) If yes, list box could contain: • Abscess drainage • Appendectomy • Cholycystectomy • Teeth extraction • Other – please specify (free text) Sexual History Sexually active? (yes/no) If yes, with whom is patient sexually active? (list box: men/women/both/not sexually active) At what age did patient begin having sexual intercourse? (number list boxes (5-50, N/A)) Pregnancies? (number list boxes, 0-15, N/A) Miscarriages? (number list boxes, 0-10, N/A) Children born alive? (number list boxes, 0-20, N/A) Live children? (number list boxes, 0-20, N/A) Current barrier contraception use? • Yes/no/not sexually active • If yes, list box should include (should be able to check more than one): o Male condom o Female condom Current hormonal contraceptive use? • Yes/no/not sexually active • If yes, list box should include o Oral contraceptive pill o Depo-Provera injection o Contraceptive patch (Ortho Evra) o Other – please specify (free text) 39 History of sexually transmitted infections? • Yes/no • If yes, list box should include (should be able to check more than one) o Chlamydia o Genital Herpes o Gonorrhea o Granuloma Inguanale (Donovanosis) o Human Papilloma Virus (Genital Warts) o Lymphogranuloma venereum o Syphilis o Trichomoniasis o Other – please specify (free text) Allergies (yes/no) If yes, please specify (free text) Current Medications For each current medication, need to document: ARVs • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Taken ? Times/Day (list box (1-5)) Anti-TB drugs • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Taken ? Times/Day (list box (1-5)) Antibiotics • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Taken ? Times/Day (list box (1-5)) Vitamins/Alternative medicines • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Taken ? Times/Day (list box (1-5)) Other medicines, please specify • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Taken ? Times/Day (list box (1-5)) 40 Immunization History This should be in a table like format with dates indicating that the vaccination has been given. BCG (list box with months/days/years) DTwP1 (list box with months/days/years) DTwP2 (list box with months/days/years) DTwP3 (list box with months/days/years) Measles (list box with months/days/years) OPV1 (list box with months/days/years) OPV2 (list box with months/days/years) OPV3 (list box with months/days/years) Tetanus Toxoid1 (list box with months/days/years) Tetanus Toxoid2 (list box with months/days/years) Vitamin A (list box with months/days/years) Example Table with dates: Date Date Date Date BCG DTwP Measles OPV TT Vitamin A Family History Mother alive? (yes/no) HIV status (positive/negative/unknown) Father alive? (yes/no) HIV status (positive/negative/unknown) Siblings? (yes/no) If yes, please detail the following for each sibling (should leave room in the database for up to 15 siblings) Name, Sex (male/female), Date of Birth, and HIV status (positive/negative/unknown) 41 Social History • Condition of home o Ownership (list box: rented/owned/squatter/other – please specify) o Degree of Disrepair (list box: scale of 1 (significant disrepair) - 5 (no disrepair)) o Type of Floor (list box: wood/cement/dirt/other – please specify) o Type of roof (free text) o Availability of nearby latrine? (yes/no) o Water source (free text) • Education level of family care giver: o Can read? (yes/no) o Can write? (yes/no) o Education up to what grade? (List box: 0-13) • Primary breadwinner: o Occupation (free text) o Migration for work? (yes/no) • Family structure (free text) • Concern for domestic abuse or violence at home? (yes/no) o If yes, please specify concern (free text) • How many bags of maize-meal does the patient’s household consume in one month? (number listbox) o Size of each bag? (number list box [units: kg]) • Does your household currently receive donated food? (yes/no) o If yes, from which organization? (free text) o What food do you receive? (free text) o How often do you receive food? (free text) o How much food is received with each delivery? (free text) 42 Review Of Systems Constitutional • Fatigue (yes/no) • Fever (yes/no) • Night sweats (yes/no) • Weakness (yes/no) • Loss of appetite (yes/no) • Weight loss (yes/no) • Weight gain (yes/no) Skin • Rash (yes/no) HEENT • Thrush (yes/no) • New onset visual changes (yes/no) • Swollen lymph nodes (yes/no) CV • Chest pain (yes/no) • Palpitations (yes/no) Pulmonary • Shortness of breath (yes/no) • Productive cough (yes/no) • Non-productive cough (yes/no) • Hemoptysis (yes/no) GI • Nausea (yes/no) • Vomiting (yes/no) • Diarrhea (yes/no) • Constipation (yes/no) • Blood in stool/vomit (yes/no) GU • Urethral discharge (yes/no) • Vaginal discharge (yes/no) • Menstrual irregularities (yes/no) Neurological • Headache (yes/no) • Numbness (yes/no) • Tingling (yes/no) Pain • Generalized pain (yes/no) • Abdominal pain (yes/no) • Joint pain (yes/no) Psychiatric • Depression (yes/no) • Anxiety (yes/no) Other • Please specify (free text) 43 Labs/Imaging • Most recent CD4 count, if done (list box, 0-2000/mcL, N/A) • Most recent viral load, if done (free text [units are viral copies]), N/A) • Other prior lab tests, please specify (free text) • Prior chest x-ray (yes/no) o If yes, when? (list box with months/years) o Normal/abnormal? o If abnormal, why? (free text) • Other prior imaging? Please specify (free text) Physical Exam Vital Signs (All the following list boxes should also have the option “not taken”) • Height (list box, 40-250 centimeters) • Weight (list box: 2-100 kilograms) • Blood pressure (list box: 50-300/40-150, mm Hg) • Pulse (list box: 30-180 beats/minute) • Temperature (list box: 34.0-43.0, degrees Celsius) • Respiratory rate (list box: 5-60 breaths/minute) General Exam General (normal/abnormal) If abnormal, please specify (free text) Skin (normal/abnormal) If abnormal, please specify (free text) HEENT (normal/abnormal) If abnormal, please specify (free text) CV (normal/abnormal) If abnormal, please specify (free text) Pulmonary (normal/abnormal) If abnormal, please specify (free text) Abdomen (normal/abnormal) If abnormal, please specify (free text) GU (normal/abnormal) If abnormal, please specify (free text) Musculoskeletal (normal/abnormal) If abnormal, please specify (free text) Neuro (normal/abnormal) If abnormal, please specify (free text) Other (free text) [need to leave at least a few lines to write here] 44 Assessment HIV/AIDS Clinical Stage (list box: pediatric 1-3, adult 1-4) Other Diagnoses upon admission to POL program (list box) • Use combined list boxes from past medical history, opportunistic infections, and sexually transmitted infections ADL Assessment (list box: bed-bound/house-bound/outside of home/other – please specify (free text)) Plan Medications Given (yes/no) If yes, for each med given, need to document: • Name of Medication (free text) • Dosage (free text) • Take ? times/day (list box (1-5)) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • For how long? (free text) • Number of pills/bottles/etc. given to patient (1-100) Medications Not Given Due To Unavailability (yes/no) If yes, for each med not given, need to document • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Number of pills/bottles/etc. not given to patient (1-100) Vaccinations Given (yes/no) If yes, (List box (able to check more than one) containing BCG, DTwP1, DTwP2, DTwP3, Measles, OPV1, OPV2, OPV3, TT1, TT2, Vitamin A) Other Therapy Recommended (yes/no) If yes, please specify (free text) Food Given (yes/no) If yes, please specify (free text) Referral (yes/no) If yes, 45 Where? (free text) For what reason? (free text) Signature of Person Doing Initial History and Physical Exam; dated at end and on each page. 46 Nurse Visit Form Date (list box with months/days/years) Time of Visit: (list box with morning/afternoon/evening) ID Patient Surname [Last name] (free text) Patient Forename [First name] (free text) Patient ID # (free text) Date of Birth (list box with months/days/years) Family Caregiver (free text) Community Nursing Assistant (list box with names of CNAs) Routine Visit or Special Consult (check box to identify which it is) Specific Concerns Patient concerns? (yes/no) If yes, please specify (free text) Family Caregiver concerns? (yes/no) If yes, please specify (free text) Community Nursing Assistant concerns? (yes/no) If yes, please specify (free text) Allergies (yes/no) If yes, please specify (free text) Current Medications For each current medication, need to document: • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Taken ? Times/Day (list box (1-5)) Immunizations • Up to date (yes/no)? • If no, what immunizations are missing (considering patient age)? (List box (able to check more than one) containing BCG, DTwP1, DTwP2, DTwP3, Measles, OPV1, OPV2, OPV3, TT1, TT2, Vitamin A) 47 Physical Exam Vital Signs (All the following list boxes should also have the option “not taken”) • Weight (list box: 2-100 kilograms) • Blood pressure (list box: 50-300/40-150, mm Hg) • Pulse (list box: 30-180 beats/minute) • Temperature (list box: 34.0-43.0, degrees Celsius) • Respiratory rate (list box: 5-60 breaths/minute) General Exam General (normal/abnormal) If abnormal, please specify (free text) Skin (normal/abnormal) If abnormal, please specify (free text) HEENT (normal/abnormal) If abnormal, please specify (free text) CV (normal/abnormal) If abnormal, please specify (free text) Pulmonary (normal/abnormal) If abnormal, please specify (free text) Abdomen (normal/abnormal) If abnormal, please specify (free text) GU (normal/abnormal) If abnormal, please specify (free text) Musculoskeletal (normal/abnormal) If abnormal, please specify (free text) Neuro (normal/abnormal) If abnormal, please specify (free text) Other (free text) [need to leave at least a few lines to write here] Assessment Changed from previous exam? (yes/no) If yes, please specify (free text) New diagnoses 1. (free text) 2. (free text) 3. (free text) HIV/AIDS Clinical Stage Assessment (list box: pediatric 1-3, adult 1-4) ADL Assessment (list box: bed-bound/house-bound/outside of home/other – please specify (free text))) 48 Plan Changed from last week? (yes/no) If yes, see below Medications Given (yes/no) If yes, for each med given, need to document: • Name of Medication (free text) • Dosage (free text) • Take ? times/day (list box (1-5)) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • For how long? (free text) • Number of pills/bottles/etc. given to patient (1-100) Medications Not Given Due To Unavailability (yes/no) If yes, for each med not given, need to document • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Number of pills/bottles/etc. not given to patient (1-100) Vaccinations Given (yes/no) If yes, (List box (able to check more than one) containing BCG, DTwP1, DTwP2, DTwP3, Measles, OPV1, OPV2, OPV3, TT1, TT2, Vitamin A) Other Therapy Given/Recommended (yes/no) If yes, please specify (free text) Food Given (yes/no) If yes, please specify (free text) Referral (yes/no) If yes, Where? (free text) For what reason? (free text) Signature of Nurse at the end of the form and on each page; dated. 49 CNA Visit Form Date of Visit: (list box with months/days/years) Time of Visit: (list box with morning/afternoon/evening) ID Patient Surname [Last name] (free text) Patient Forename [First name] (free text) Patient ID # (free text) Date of Birth (list box with months/days/years) Name of Family Caregiver (free text) Name of Community Nursing Assistant (list box with names of CNAs) Routine Visit or Special Consult (check box to identify which it is) Specific Concerns Patient concerns? (yes/no) If yes, please specify (free text) Family Caregiver concerns? (yes/no) If yes, please specify (free text) Patient has enough food? (yes/no) Patient has sufficient supply of medications? (yes/no) If no, specify which medications patient needs. (free text) Allergies (yes/no) If yes, please specify (free text) Current Medications For each current medication, need to document: • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Taken ? Times/Day (list box (1-5)) 50 Physical Exam Vital Signs (All the following list boxes should have the option “not taken”) • Weight (list box: 2-100 kilograms) • Blood pressure (list box: 50-300/40-150, mm Hg) • Pulse (list box: 30-180 beats/minute) • Temperature (list box: 34.0-43.0, degrees Celsius) • Respiratory rate (list box: 5-60 breaths/minute) General Exam Changed from last week? (yes/no) If yes, please specify (free text) Assessment Changed from last week? (yes/no) If yes, please specify (free text) New diagnoses 1. (free text) 2. (free text) 3. (free text) Estimated weekly ARV adherence rate, if applicable: (list box: <50%, 50-75%, 75-95%, 95-100%, N/A) Estimated weekly DOTS adherence rate, if applicable: (list box: <50%, 50-75%, 75-95%, 95-100%, N/A) ADL Assessment (list box: bed-bound/house-bound/outside of home/other – please specify (free text)) 51 Plan Changed from last week? (yes/no) If yes, see below Medications Given (yes/no) If yes, for each med given, need to document: • Name of Medication (free text) • Dosage (free text) • Take ? times/day (list box (1-5)) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • For how long? (free text) • Number of pills/bottles/etc. given to patient (1-100) Medications Not Given Due To Unavailability (yes/no) If yes, for each med not given, need to document • Name of Medication (free text) • Dosage (free text) • Route (list box with: oral/IM/IV/rectal/patch/lozenge/other) • Number of pills/bottles/etc. not given to patient (1-100) Other Therapy Given/Recommended (yes/no) If yes, please specify (free text) Food Given (yes/no) If yes, please specify (free text) Referral (yes/no) If yes, Where? (free text) For what reason? (free text) Signature of CNA at the end of the form and on each page (if more than one); dated. 52 Family Care Giver Weekly Form Week ending (list box with months/days/years) ID Name of Patient (free text) Patient ID # (free text) Name of Family Care Giver (free text) Name of Community Nursing Assistant (list box with names of CNAs) Current medications (to be filled out by CNA when giving the FCG the new form) • This information is not intended to be used as information to update the database. Just the medications on the CNA form should be used to update the database. • For example, the CNA may write in this area: pink oval pill, twice a day. Or she may draw a picture of a pill etc… Symptoms Recorded/Day For A Week This should be put into the database… • General pain (yes/no) • Night sweats (yes/no) • Loss of Appetite (yes/no) • Itching (yes/no) • Rash (yes/no) • Difficulty breathing (yes/no) • Productive cough (yes/no) • Fever (yes/no) • Nausea (yes/no) • Vomiting (episodes/day) • Diarrhea (episodes/day) • Abdominal pain (yes/no) • Yellow eyes (yes/no) • Leg pain (yes/no) • Headache (yes/no) • Numbness (yes/no) • Other symptom – please specify (free text) 53 Under the horizontal areas for recording symptoms, there should also be room to document other significant medications or therapies (other than ARVs and DOTS) that are given on most days. This can be customized by the CNA at the beginning of each week. The actual therapies should be written out on the forms and should be entered in the database: • Therapy 1 (number/day) • Therapy 2 (number/day) • Therapy 3 (number/day) Under this area, there should be a horizontal row called “Other treatments,” where the FCG can just write several different one shot treatments given on any given day. Signature or fingerprint of FCG at the end of the form; dated. 54 Appendix C: Paper Forms (Please See Attachments) 55 Appendix D: Questions for Report Generation Basic Patient History - Name - Patient ID # - Assigned FCG - Assigned CNA - Date of Birth - Age - Sex - Address - Phone number - Zone - Date of HIV diagnosis - On ARVs? o If yes, for how long? - Last CD4 count, if done - Last viral load, if done - Last assessment of AIDS clinical stage - History of TB? o If yes, treated with what meds? o When was it diagnosed? o Multi-drug resistant tuberculosis? - Allergies - Current medications - Opportunistic Infections - Vaccination history 56 Questions Regarding an Individual Patient’s Health 1. What is the “estimated adherence rate” to ARVs for a patient over time? 2. List all the medications that an individual patient is on. 3. List a patient’s allergies, if any. 4. Track a patient’s CD4 count over time. 5. Track a patient’s viral load over time. 6. What percentage of days in the past month has a patient had diarrhea? 7. Chart the top three symptoms a person has experienced in one month (as charted by the FCG). 8. Track the weekly weights of a patient over one year. 9. What vaccinations has a patient completed? 10. What vaccinations is a patient missing? 11. What opportunistic infections has a patient had? 12. Who are the patient’s assigned FCG and CNA? 13. List all of the hospice admissions for a patient. 14. List all of the nurse visits for a patient. 15. List all of the CNA visits for a patient. 16. Has this patient had TB? If yes, when and how was it treated? And was it multi-drug resistant? 17. Chart the specific activities done by a certain FCG in one month, 18. List all of the vaccinations an individual has had and when. Aggregate Data Reports Report Questions for Management 1. What is the total number of patients enrolled in the program, broken down by sex (M/F) and age categories (0-5, 6-14, 15+)? 2. What is the total number of CNA patient visits done in one month? 3. What is the breakdown of patient visits done per individual CNA in one month? 4. What is the total number of nurse patient visits done in one month? 5. What is the total number of hospice admissions in one month? 6. What is the total number of hospice discharges in one month? 7. Chart the names and amounts of medications given in one month. 8. Chart the names and amounts of medications that were not given, but needed in one month. 9. How much and what kinds of food were given out in one month? 57 Reports Questions for Donors 1. What is the total number of patients enrolled in the program, broken down by sex (M/F) and age categories (0-5, 6-14, 15+)? 2. Track the number of new patients enrolled in POL per month over one year. 3. What is the total number of patients enrolled in one year? 4. Chart the household income levels of all patients enrolled. 5. What percentage of patients is on ARVs? 6. Chart the “estimated adherence rates” for ARVs over the course of one year for the entire POL patient population. 7. What percentage of patients is receiving food from POL? 8. What percentage of patients has access to a latrine? Report Questions for Impact Assessment 1. What is the total number of patients enrolled in the program, broken down by sex (M/F) and age categories (0-5, 6-14, 15+)? 2. Track the number of new patients enrolled in POL per month over one year. 3. What percentage of patients is on ARVs? 4. Chart the “estimated adherence rates” for ARVs over the course of one year? 5. What percentage of patients is receiving food from POL? Internal Status Reports Monthly statistics should include: 1. How many patients are enrolled in POL? 2. How many new patients have been enrolled in POL in a certain month? 3. Of the new patients enrolled in a month, break it down by sex (M/F) and age (0-5, 6-14, 15+) 4. How many patients have died in a month? Break it down by sex (M/F) and age (0-5, 6- 14, 15+) 5. Find the number of CNA patient visits in a month. 6. Find the number of nurse patient visits in a month. 7. Chart the number of visits done by each CNA in a month. 8. Chart the number of patients assigned to each CNA. 9. Chart the number of standard CNA visits and special consult CNA visits (comparing all CNAs). 10. What percentage of all enrolled patients is on ARVs? 11. Chart the “estimated adherence rates” for all patients on ARVs 12. Find the top ten medications given by all CNAs in one month. 13. Find the top ten medications given by the nurse in one month. 14. Find the top ten medications given out by anyone in one month. 15. Find the top five medications that should have been given, but were not given due to their not being in stock. 16. Chart the opportunistic infections diagnosed, broken down by opportunistic infection, diagnosed in one month. 17. Chart the number vaccinations given in one month, broken down by each vaccination in the schedule (i.e. DTwP1, DTwP2 etc.). 18. How many cases of TB were diagnosed in one month? 58 19. Of the cases of TB diagnosed, how many were multi-drug resistant (MDR)? 20. How many cases of malaria were diagnosed in one month? 21. What percentage of patients is currently on PCP prophylaxis (Trimethoprim- Sulfamethoxazole (a.k.a Bactrim))? 22. What percentage of patients is currently receiving food through POL? 23. Track the census of the hospice over one month. 24. What are the top five symptoms reported by FCGs? Long-term statistics on the program should include (taking yearly statistics as an example): 1. What is the total number of patients enrolled in POL? Break it down by sex (M/F) and age (0-5, 6-14, 15+). 2. Track the number of new patients enrolled in POL per month over one year. 3. What is the total number of patients enrolled in POL, broken down per CNA? 4. How many patients have died in a year and break it down by sex (M/F) and age (0-5, 6- 14, 15+)? 5. Track the patient visits per CNA per month over one year. 6. Track the nurse visits per month over one year. 7. Group the enrolled patients by their assigned CNAs. 8. Chart the patients enrolled by zone in which they live. 9. Track the percentage of patients on ARVs over one year. 10. Track the estimated ARV adherence rates over one year. 11. Track the rates of [active] TB/HIV co-infection over one year. 12. Sort the enrolled patients by AIDS clinical stage (pediatric 1-3; adult 1-4). 13. What is the current rate of active TB infection? 14. Chart the opportunistic infections diagnosed (broken down by opportunistic infection) over one year. 15. What percentage of patients is receiving POL food deliveries? 16. What percentage of patients greater than 1 year has completed all vaccinations? 17. Chart the ADL status (mobile, housebound, bed-bound) of the POL patient population. 18. Track the census of the hospice over one year. 19. What are the top five symptoms reported by FCGs?
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