Citation: Monsen, K. A., Handler, H. E., Le, S. & Riemer, J. G.(2014). Feasibility of using the Omaha System for self-report of symptoms by adults with diabetes. Available in the Online Journal of Nursing Informatics (OJNI), 18 (3),
Diabetes self-management in collaboration with the healthcare team is an important strategy to improve population health and decrease healthcare costs. Purposes of this study were two-fold: 1) to evaluate the feasibility of using a standardized terminology for self-report of symptoms by adults with diabetes, and 2) to examine self-reported symptoms relative to the symptoms listed in a publicly-available clinical assessment form for diabetes clinic visits. Respondents with diabetes self-identified 180 symptoms, and 20% of respondents identified 49 symptoms, compared to 13 symptoms on the clinical assessment form. An additional symptom of excessive thirst was suggested to enhance the Omaha System. The Omaha System should be further explored as a communication tool between individuals and their health care providers in personal health records, surveys, and other assessment tools, and reading level concerns should be addressed. The Omaha System has potential to be used internationally in surveys of diverse problems and populations to help identify symptoms of diabetes for improving communication between patients and the healthcare team.
Diabetes is an international crisis with considerable human and economic costs. In terms of human suffering, patients with diabetes are more likely to become blind, suffer from kidney failure and die before their time (c3 Health, 2011). In economic terms, diabetes cost the global economy nearly $50 billion in 2010, and this figure is projected to increase substantially. (Bloom, Cafiero, Jané-Llopis et al., 2012; Bergman, Buysschaert, Schwarz, et al., 2012; c3 Health, 2011; Centers for Disease Control and Prevention (CDC), 2011). These costs are intolerable from a human perspective, and not sustainable from an economic perspective. Innovative methods are needed to better address the critical needs of patients and populations affected by the diabetes epidemic (AHRQ Health Care Innovations Exchange, 2012).
Self-management is a key strategy for optimizing health and reducing the cost of diabetes care (c3 Health, 2011; CDC, 2011; Shrivastava, Shrivastava, & Ramasamy, 2013). Patients with diabetes may experience symptoms that are important cues for treatment (Rosa, Lapides, Hayden & Santangelo, 2014). It is essential for healthcare teams to be aware of relevant symptoms to optimally assist patients in understanding and managing diabetes. Improving patient-provider communication regarding symptoms is an important step toward improving self-management skills of adults with diabetes.
Informatics methods are emerging to manage patient information in ways that can be standardized and shared across settings and populations (Institute of Medicine, 2010; 2011; 2012). Personal health records (PHRs) are becoming increasingly important for patient empowerment and communication with health care teams (AHRQ Health Care Innovations Exchange, 2012; Carrión, Fernandez Aleman & Toval, 2012; Glasgow, Kaplan, Ockene, Fisher, & Emmons, 2012; Schnipper, Gandhi, Wald, et al., 2012). For interoperability and exchange of information, standardized terminologies should be used to document symptoms within electronic platforms such as personal health records (PHRs) (Institute of Medicine, 2010; 2011; 2012). However, use of standardized terminologies within PHRs and other patient self-report surveys and communication tools is in its infancy. There is a critical need to enhance patient communication with the healthcare team and to develop patient focused care plans and communication tools. Research evaluating information communicated by community dwelling older adults suggests that the Omaha System (Martin, 2005) may be a standardized terminology that is suitable for use in PHRs (Monsen, Westra, Paitich et al., 2012).
The Omaha System exists in the public domain, and provides a recognizable, structured, defined problem list that enables capture of multidisciplinary healthcare data (Martin, 2005; Omaha System, 2014). The Omaha System problem list includes 42 problems, and each problem has a definition and a unique list of symptoms. The problems are arranged in four domains that reflect a holistic approach to patient assessment: Environmental, Psychosocial, Physiological, and Health-related behaviors (Martin, 2005, Omaha System, 2014). The Omaha System is further described in the methods section.
Previous studies examined use of Omaha System symptoms related to diabetes to create an interview data collection tool (Monsen, de la Luz, Pérez Garcés et al, 2012; Handler, Le, Balfour et al., 2012). Nursing students from Canada and the United States together with faculty from Mexico and the United States interviewed adults with diabetes in Mexico using the data collection tool. De-identified data were analyzed using descriptive statistics. Twenty-eight symptoms from 13 Omaha System problems, including Income, Neighborhood/workplace safety, Spirituality, Grief, Mental Health, Communicable/Infectious Condition, Circulation, Vision, Skin, Neuro-musculo-skeletal function, Nutrition, Health care supervision, and Medication regimen were included in the interview data collection tool. The adults with diabetes had a mean of 15.6 symptoms each. All but two symptoms had at least one occurrence (Monsen, de la Luz, Pérez Garcés et al, 2012). A second study used the same instrument in interviews replicated these results, with all 28 symptoms represented in the data (Handler et al., 2012). These preliminary studies were limited to a few rural Mexican adults and therefore results should not be generalized. However, the consistent findings across both studies suggest that the Omaha System may be useful in describing the symptoms of adults with diabetes.
Other forms of assessment are common in diabetes care. For example, the Medical History and Questionnaire for Diabetes Patients from Oregon Health & Science University diabetes assessment form that includes a comprehensive assessment is available to the public (Oregon Health & Science University, n.d.). Such assessments are increasingly incorporated within electronic platforms such as PHRs (Schnipper et al., 2012). However, no diabetes assessments based on standardized terminologies were identified in the literature other than the studies described above.
An assessment based on symptoms of a larger, more comprehensive subset of Omaha System problems may describe the prevalence of symptoms experienced by diabetics more fully than the previous survey or other existing healthcare assessments. Such an assessment could serve as a first step toward designing comprehensive, holistic, patient-focused diabetes prevention and management approaches suitable for patient communication with health care teams in platforms such as PHRs and EHRs (Martin, 2005; Omaha System, 2014). Purposes of this study were two-fold: 1) to evaluate the feasibility of using a standardized terminology for self-report of symptoms by adults with diabetes, and 2) to examine self-reported symptoms relative to the symptoms listed in a publicly-available clinical assessment form for diabetes clinic visits.
This descriptive survey study received exemption from review from the University of Minnesota Institutional Review Board. An anonymous survey was developed by the research team using the Omaha System as an online survey tool. A convenience sample of adults with diabetes was recruited through social media methods, and invitations to colleagues, friends and family over a three-month period. For example, messages were sent to the American Diabetic Association and the American Association of Diabetes Educators Facebook pages, a diabetic student Facebook group and e-mail lists, professional nursing research society section members, and e-mail subscription lists for the Omaha System and the Minnesota Omaha System Users Groups.
The posted message stated:
We are nursing students from the University of Minnesota School of Nursing, who are working in collaboration with a School of Nursing researcher. We invite people 18 years of age or older who have diabetes to participate in a comprehensive and holistic survey providing information about the impact of diabetes on the whole person and family. The survey is anonymous and voluntary. The purposes of the study are to understand the symptoms that people with diabetes experience in everyday life; and to improve information systems that support the health care of diabetics using the Omaha System (a standardized terminology). People who volunteer to participate will not benefit personally or receive a response from researchers. This study was deemed exempt from review by the University of Minnesota Institutional Review Board, and is conducted through the Center for Nursing Informatics. Please help us by sharing this link with people who would like to join in our effort. Thank you very much!
The first survey question required an answer to this statement that describes study purposes and the inclusion and exclusion criteria:
I am 18 years old or over, and I understand that I am providing information anonymously and voluntarily. This information will be used to understand how the Omaha System symptoms terms describe the prevalence of diabetes symptoms. I will not be compensated for participating in this survey. I can choose to participate or not participate at any time. All responses are anonymous and will not be identifiable. The results of the survey will provide information regarding diabetes symptoms using the Omaha System in the general public for individuals ages 18 and over, and these survey results will be shared at Omaha System meetings and in publications. If you do not agree to the terms of participation, please do not respond to the survey.
Subsequent items were related to Omaha System symptoms by problem. An open-ended question at the end of the survey solicited additional symptoms of diabetes missing in this survey. The final item was a free text field that enabled respondents to provide narrative comments.
Instrument: the Omaha System
The Omaha System is a simple, knowable standardized terminology and ontology for population health consisting of three components, the Problem Classification Scheme, the Intervention Scheme, and the Problem Rating Scale for Outcomes. The Problem Classification Scheme is the component of interest for this study because it provides a structure for a standardized assessment of individuals, families, and communities. It helps collect, sort, document, classify, analyze, retrieve, and communicate health-related needs and strengths. It is a comprehensive, orderly, non-exhaustive, mutually exclusive taxonomy or hierarchy. The Problem Classification Scheme consists of four levels of abstraction. Four domains appear at the first or most general level. Forty-two client problems or areas of concern are at the second level. It is important to note that by definition, the term “problem” is neutral and does not necessarily describe a negative concept or condition. The third level consists of two sets of problem modifiers: health promotion, potential, and actual as well as individual, family, and community. Clusters of symptoms that describe actual problems are at the fourth or most specific level as illustrated in Table 1 (Martin, 2005; Omaha System, 2014).
Table 1. Symptoms from the Oregon Health & Science University Assessment Mapped to Omaha System by Problem and Symptom (Percent of Respondents)
View Table 1
A subset of the 42 Omaha System problems was included in the survey. Instead of selecting 28 symptoms from only 13 problems as in the original interview tool, this survey tool included all 231 symptoms from 26 problems. The problems for the survey were selected based on the questionnaire that was developed by faculty and students who participated in the earlier study (Monsen, de la Luz, Pérez Garcés et al, 2012; Handler, Le, Balfour et al., 2012). By interviewing individuals with diabetes in both rural and urban settings, recurrent symptoms associated with diabetes were identified. All the problems selected for the survey had previously been mentioned as a problem associated with diabetes or one that individuals experienced since being diagnosed with this illness during the interviews conducted in Mexico. These problems were: Sanitation, Residence, Communication with community resources, Social Contact, Interpersonal Relationship, Digestion-hydration, Bowel function, Urinary function, Oral health, Pain, Circulation, Reproductive function, Sleep and rest patterns, Physical activity, Personal care. In addition the following were included from the original interview tool: Income, Neighborhood/workplace safety, Spirituality, Mental health, Communicable/infectious condition, Vision, Skin, Neuro-musculo-skeletal function, Nutrition, Health care supervision, and Medication regimen.
The Medical History and Questionnaire for Diabetes Patients from Oregon Health & Science University diabetes assessment form was selected because it was publicly available and listed diabetes symptoms for patients (Oregon Health & Science University, n.d.). It included 16 symptoms in addition to demographic and health history items and diabetes management questions. The symptoms check list included foot numbness, tingling in feet, foot pain, foot sores (ulcers), problems with sexual dysfunction, frequent diarrhea, frequent nausea or vomiting, feeling full rapidly while eating, lightheaded when standing up, unusual sweating, leg cramping and fatigue, and chest pain. There was also a check box to signify ‘no exercise routine.’ There were blanks to complete for ‘consuming alcohol,’ and ‘smoking.’ There was also a blank for a numeric response to ‘How many times do you get up to urinate at night?’ Mapping these symptoms to the 231 symptoms in the survey was completed by the research team by an Omaha System expert and validated by the co-authors.
We examined frequencies of self-reported symptoms in the survey data. We chose a cut point of 20 percent of the sample since the analysis increased a likelihood of symptom relevance for many adults with diabetes and to reduce the likelihood of error in data interpretation. Finally, we summarized narrative comments from the responses to the two open-ended survey questions.
A total of 31 individuals with diabetes responded to the survey. All individuals agreed to the conditions of the study, and therefore all responses were included in the analysis. Most participants were from the United States. 86% had Type 2 diabetes (74.2%), and had been diagnosed with diabetes for more than 10 years (67.7%).
Of the 231 symptoms in the survey, 185 were self-identified by at least one respondent and 49 symptoms were self-identified by 20% or more of the respondents. Of these 49 symptoms, 28 (57.1%) symptoms were from the Physiological domain and 18 (36.7%) were from the Health-related behaviors domain. Only one symptom was self-identified from the Environmental and Psychosocial domains. Ten symptoms were identified by at least 50% of respondents. These ten symptoms were from four problems: Nutrition, Physical activity, Urinary function, and Sleep and rest patterns (see Figure 1).
Fifteen of 16 symptoms from the Oregon Health & Sciences University Assessment were mapped to Omaha System symptoms. Other than consuming alcohol and smoking, all symptoms were from the Physiological Domain. The symptom of unusual sweating was not mapped due to lack of a semantic match in the Omaha System. Frequencies of responses for 13 of 16 symptoms mapped to the Oregon Health and Science University form are noted in Table 2. Six of the 13 were reported by more than 20% of survey respondents. Responses for symptoms of Substance use including consuming alcohol and smoking were not present in the data because the study survey did not include the symptoms from the Omaha System problem Substance use.
Table 2. Number of Omaha System Symptoms by Domain and Problem in Previous Interview Tool, and Selected by Adults with Diabetes (N=31)
View Table 2
Several respondents provided qualitative narrative regarding a) additional symptoms; b) further description of self-reported symptoms; c) use of the Omaha System as a terminology for the general public; and d) suggestions for survey improvement. Numerous respondents suggested excessive thirst should be included as a symptom of diabetes. A few respondents further described existing symptoms, including a lengthy description of generalized chronic pain, and a description of seizing up of hand muscles. Other respondents provided feedback on usability of the Omaha System as a terminology for non-health care professionals, noting that some terms were unfamiliar, and that the reading level of symptoms was above the 5th or 6th grade level. Some respondents gave suggestions for improvement in survey design to help other respondents interpret the symptoms as survey items.
The Omaha System was used as a survey instrument to describe the self-identified prevalence of symptoms in persons with diabetes. A total 180 of 231 possible symptoms were self-identified by patients and 49 symptoms were identified by 20% or more respondents. Narrative comments suggested excessive thirst should be included as an additional symptoms of diabetes. Results suggested that survey symptoms items captured relevant information from respondents regarding their personal health perceptions. Furthermore, the frequent suggestion of excessive thirst as a missing symptom should be considered in a future revision of the Omaha System.
To improve diabetes self-management, it is essential to understand the symptoms that patients with diabetes experience in everyday life, instead of limiting assessments to a few symptoms of disease. For example, respondents recognized their symptoms of problems from the Health-related Behaviors Domain: Sleep and rest patterns, Physical activity, and Nutrition. These problems can be addressed through self-management and have the potential to influence diabetes symptoms and overall health. Additionally, the symptom of foot pain in the OHSU questionnaire limits the pain assessment and may miss important information about the experience of generalized chronic pain by adults with diabetes. Overall, these findings suggest that a more comprehensive and holistic assessment of symptoms would be beneficial to improve communication between patients and the health care team. As well, future versions of the survey should include symptoms from the Substance use problem to capture tobacco and alcohol use.
A major challenge of this study was recruiting individuals with diabetes through social media to participate anonymously. Despite extensive efforts, only 31 responses were received. Due to the small sample size, the results should be interpreted with caution, and the study should be replicated broadly to validate findings. In future studies incentives for participation may be considered to improve sample size.
Implications of the study include the potential to use the Omaha System during patient encounters and in PHRs as a communication tool between adults with diabetes and the health care team. Use of a standardized terminology for such assessments would improve data interoperability and exchange. Respondent comments suggest that further research is needed to evaluate the reading level of Omaha System symptoms for use by the general public. This project is an example of student-led terminology-related research. This approach was a successful educational strategy for developing competencies in informatics and nursing research in a series of international projects that contributed new knowledge about the self-report of symptoms for adults with diabetes. There is potential to generalize this method for student learning internationally, expanding to other clinical conditions and patient populations. Several examples are available at the Omaha System Partnership for Knowledge Discovery and Health Care Quality organization, including a seven-country study of community-level symptoms (Flaten, Kerr & Monsen, 2012; University of Minnesota School of Nursing, 2014).
Future research opportunities include replication of this study, including research in other countries, and use of the Omaha System as a survey instrument for other diseases or conditions. Furthermore the findings suggest that usability studies should be conducted of the Omaha System symptoms as a communication tool in PHRs, including readability and use by general public and clinicians.
Individuals with diabetes self-identified 180 symptoms describing personal health concerns that may be amenable to health care intervention. Problems that are not usually associated with diabetes were prevalent in the data, including those related to Pain and Sleep and rest patterns, and should be included by health care teams when performing holistic assessments within the diabetic population. Compared to the Oregon Health & Sciences University Assessment, the survey captured more self-reported symptoms for more problems. The Omaha System is a standardized health care terminology that may be useful in communication between individuals and their healthcare providers in PHRs. It has potential for use internationally in surveys of diverse populations to help identify symptoms of diabetes.
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Karen A. Monsen, PhD, RN, FAAN is an associate professor at the University of Minnesota School of Nursing where she is specialty coordinator for the Doctor of Nursing Practice Informatics Specialty and co-director of the Center for Nursing Informatics.
Hillary E. Handler, RN, BSN graduated from the University of Minnesota School of Nursing in May 2013 with a Bachelors of Science in Nursing and Minor in Spanish. She is a staff nurse at United Hospital in St. Paul, Minnesota.
Suzanne M. Le, RN, BSN graduated from the University of Minnesota School of Nursing in May 2013 with a Bachelors of Science in Nursing. She is a staff nurse at Gillette Children’s Specialty Heatlhcare in St. Paul, Minnesota.
Judith G. Riemer, MS, RN, CNS is an independent health care consultant and a licensed Clinical Nurse Specialist in community health nursing in the state of California.