Carmit K. McMullen

Health-Related Quality of Life Among Long-Term Rectal Cancer Survivors With an Ostomy: Manifestations by Sex

PURPOSE Intestinal stomas can pose significant challenges for long-term (> or = 5 years) rectal cancer (RC) survivors. Specifying common challenges and sociodemographic or clinical differences will further the development of tailored interventions to improve health-related quality of life (HRQOL). PATIENTS AND METHODS This was a matched cross-sectional study of long-term RC survivors conducted in three Kaiser Permanente regions. The mailed questionnaire included the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-Ostomy) and Medical Outcomes Study 36-Item Short-Form Health Survey, version 2 (SF-36v2). Groups surveyed were permanent ostomates (cases) and those who did not require an ostomy (controls). RC survivors were matched on sex, age, and time since diagnosis. Comparisons between groups used regression analysis with adjustment for age, comorbidity score, history of radiation therapy, income, and work status. RESULTS Response rate was 54% (491 of 909). Cases and controls had similar demographic characteristics. On the basis of the mCOH-QOL-Ostomy, both male and female cases had significantly worse social well-being compared with controls, while only female cases reported significantly worse overall HRQOL and psychological well-being. For younger females (< age 75 years), ostomy had a greater impact on physical well-being compared with older females. Based on the SF-36v2, statistically significant and meaningful differences between female cases and controls were observed for seven of the eight scales and on the physical and mental component summary scores. CONCLUSION Men and women report a different profile of challenges, suggesting the need for targeted or sex-specific interventions to improve HRQOL in this population. This may include focus on physical HRQOL for female ostomy survivors younger than age 75.

Context Matters: The Experience of 14 Research Teams in Systematically Reporting Contextual Factors Important for Practice Change

PURPOSE We aimed to advance the internal and external validity of research by sharing our empirical experience and recommendations for systematically reporting contextual factors. METHODS Fourteen teams conducting research on primary care practice transformation retrospectively considered contextual factors important to interpreting their findings (internal validity) and transporting or reinventing their findings in other settings/situations (external validity). Each team provided a table or list of important contextual factors and interpretive text included as appendices to the articles in this supplement. Team members identified the most important contextual factors for their studies. We grouped the findings thematically and developed recommendations for reporting context. RESULTS The most important contextual factors sorted into 5 domains: (1) the practice setting, (2) the larger organization, (3) the external environment, (4) implementation pathway, and (5) the motivation for implementation. To understand context, investigators recommend (1) engaging diverse perspectives and data sources, (2) considering multiple levels, (3) evaluating history and evolution over time, (4) looking at formal and informal systems and culture, and (5) assessing the (often nonlinear) interactions between contextual factors and both the process and outcome of studies. We include a template with tabular and interpretive elements to help study teams engage research participants in reporting relevant context. CONCLUSIONS These findings demonstrate the feasibility and potential utility of identifying and reporting contextual factors. Involving diverse stakeholders in assessing context at multiple stages of the research process, examining their association with outcomes, and consistently reporting critical contextual factors are important challenges for a field interested in improving the internal and external validity and impact of health care research.

Gender Differences in Quality of Life Among Long-Term Colorectal Cancer Survivors With Ostomies

PURPOSE/OBJECTIVES To describe how gender shapes the concerns and adaptations of long-term (i.e., more than five years) colorectal cancer survivors with ostomies. DESIGN Qualitative study using content analysis of focus group content. SETTING Oregon, southwestern Washington, and northern California. SAMPLE Four female and four male focus groups (N = 33) selected from 282 quantitative survey participants with health-related quality-of-life (HRQOL) scores in the highest or lowest quartile. METHODS Eight focus groups discussed the challenges of living with an ostomy. Content was recorded, transcribed, and analyzed using directive and summative content analysis. MAIN RESEARCH VARIABLES HRQOL domains of physical, psychological, social, and spiritual well-being. FINDINGS All groups reported avoiding foods that cause gas or rapid transit and discussed how limiting the amount of food eaten controlled the output. All groups discussed physical activities, getting support from friends and family, and the importance of being resilient. Both genders identified challenges with sexuality and intimacy. Coping and adjustment difficulties mostly were discussed by women, with men only discussing these issues to a small extent. Difficulties with sleep primarily were identified by women with low HRQOL. Problems with body image and depression were discussed only by women with low HRQOL. CONCLUSIONS Common issues included diet management, physical activity, social support, and sexuality. Although both genders identified challenges, women described more specific psychological and social issues than men. IMPLICATIONS FOR NURSING Application of these gender-based differences can inform educational interventions for colorectal cancer survivors with ostomies.

Distributed cognition: An alternative model of cognition for medical informatics

BACKGROUND Medical informatics has been guided by an individual-centered model of human cognition, inherited from classical theory of mind, in which knowledge, problem-solving, and information-processing responsible for intelligent behavior all derive from the inner workings of an individual agent. OBJECTIVES AND RESULTS In this paper we argue that medical informatics commitment to the classical model of cognition conflates the processing performed by the minds of individual agents with the processing performed by the larger distributed activity systems within which individuals operate. We review trends in cognitive science that seek to close the gap between general-purpose models of cognition and applied considerations of real-world human performance. One outcome is the theory of distributed cognition, in which the unit of analysis for understanding performance is the activity system which comprises a group of human actors, their tools and environment, and is organized by a particular history of goal-directed action and interaction. CONCLUSION We describe and argue for the relevance of distributed cognition to medical informatics, both for the study of human performance in healthcare and for the design of technologies meant to enhance this performance.

Development and evaluation of a comprehensive clinical decision support taxonomy: comparison of front-end tools in commercial and internally developed electronic health record systems

BACKGROUND Clinical decision support (CDS) is a valuable tool for improving healthcare quality and lowering costs. However, there is no comprehensive taxonomy of types of CDS and there has been limited research on the availability of various CDS tools across current electronic health record (EHR) systems. OBJECTIVE To develop and validate a taxonomy of front-end CDS tools and to assess support for these tools in major commercial and internally developed EHRs. STUDY DESIGN AND METHODS We used a modified Delphi approach with a panel of 11 decision support experts to develop a taxonomy of 53 front-end CDS tools. Based on this taxonomy, a survey on CDS tools was sent to a purposive sample of commercial EHR vendors (n=9) and leading healthcare institutions with internally developed state-of-the-art EHRs (n=4). RESULTS Responses were received from all healthcare institutions and 7 of 9 EHR vendors (response rate: 85%). All 53 types of CDS tools identified in the taxonomy were found in at least one surveyed EHR system, but only 8 functions were present in all EHRs. Medication dosing support and order facilitators were the most commonly available classes of decision support, while expert systems (eg, diagnostic decision support, ventilator management suggestions) were the least common. CONCLUSION We developed and validated a comprehensive taxonomy of front-end CDS tools. A subsequent survey of commercial EHR vendors and leading healthcare institutions revealed a small core set of common CDS tools, but identified significant variability in the remainder of clinical decision support content.

Figuring Out Sex in a Reconfigured Body: Experiences of Female Colorectal Cancer Survivors with Ostomies

Colorectal cancer survivors with ostomies can face complex concerns regarding sexuality. We used an anthropological perspective to examine the experiences of 30 female colorectal cancer survivors with ostomies to shed light on the sexual challenges and adaptations made in the wake of cancer surgery and treatment. Participants fell into four categories with regard to their sexual experience post surgery; however, not all women found their altered sexuality to be particularly problematic. This type of phenomenological examination can inform a more patient-centered, less biomedically focused paradigm for assessing and improving the sexual health of cancer survivors.

Governance for clinical decision support: case studies and recommended practices from leading institutions

OBJECTIVE Clinical decision support (CDS) is a powerful tool for improving healthcare quality and ensuring patient safety; however, effective implementation of CDS requires effective clinical and technical governance structures. The authors sought to determine the range and variety of these governance structures and identify a set of recommended practices through observational study. DESIGN Three site visits were conducted at institutions across the USA to learn about CDS capabilities and processes from clinical, technical, and organizational perspectives. Based on the results of these visits, written questionnaires were sent to the three institutions visited and two additional sites. Together, these five organizations encompass a variety of academic and community hospitals as well as small and large ambulatory practices. These organizations use both commercially available and internally developed clinical information systems. MEASUREMENTS Characteristics of clinical information systems and CDS systems used at each site as well as governance structures and content management approaches were identified through extensive field interviews and follow-up surveys. RESULTS Six recommended practices were identified in the area of governance, and four were identified in the area of content management. Key similarities and differences between the organizations studied were also highlighted. CONCLUSION Each of the five sites studied contributed to the recommended practices presented in this paper for CDS governance. Since these strategies appear to be useful at a diverse range of institutions, they should be considered by any future implementers of decision support.

Recommended practices for computerized clinical decision support and knowledge management in community settings: a qualitative study

BackgroundThe purpose of this study was to identify recommended practices for computerized clinical decision support (CDS) development and implementation and for knowledge management (KM) processes in ambulatory clinics and community hospitals using commercial or locally developed systems in the U.S.MethodsGuided by the Multiple Perspectives Framework, the authors conducted ethnographic field studies at two community hospitals and five ambulatory clinic organizations across the U.S. Using a Rapid Assessment Process, a multidisciplinary research team: gathered preliminary assessment data; conducted on-site interviews, observations, and field surveys; analyzed data using both template and grounded methods; and developed universal themes. A panel of experts produced recommended practices.ResultsThe team identified ten themes related to CDS and KM. These include: 1) workflow; 2) knowledge management; 3) data as a foundation for CDS; 4) user computer interaction; 5) measurement and metrics; 6) governance; 7) translation for collaboration; 8) the meaning of CDS; 9) roles of special, essential people; and 10) communication, training, and support. Experts developed recommendations about each theme. The original Multiple Perspectives framework was modified to make explicit a new theoretical construct, that of Translational Interaction.ConclusionsThese ten themes represent areas that need attention if a clinic or community hospital plans to implement and successfully utilize CDS. In addition, they have implications for workforce education, research, and national-level policy development. The Translational Interaction construct could guide future applied informatics research endeavors.

Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations.

PURPOSE The purpose of this article was to describe persistent ostomy-specific concerns and adaptations in long-term (>5 years) colorectal cancer survivors with ostomies. SUBJECTS AND SETTINGS Thirty-three colorectal cancer survivors who participated in 8 gender- and health-related quality of life stratified focus groups and 130 colorectal cancer survivors who provided written comments to 2 open-ended questions on ostomy location and pouch problems participated in the study. Data were collected on health maintenance organization members in Oregon, southwestern Washington, and northern California. METHODS Qualitative data were analyzed for the 8 focus groups and written comments from 2 open-ended survey questions. Discussions from the focu s groups were recorded, transcribed, and analyzed using content analysis. Written content from the open-ended questions was derived from a mailed questionnaire on health-related quality of life in survivors with ostomies and analyzed using content analysis. RESULTS Discussions related to persistent ostomy-related issues more than 5 years after formation were common. Persistent ostomy-related issues were focused on clothing restrictions and adaptations, dietary concerns, issues related to ostomy equipment and self-care, and the constant need to find solutions to adjust and readjust to living with an ostomy. CONCLUSIONS Ostomy-specific concerns persist 5 years and more for long-term colorectal cancer survivors after initial ostomy formation. Adaptations tend to be individualized and based on trial and error. Findings underscore the need to develop long-term support mechanisms that survivors can access to promote better coping and adjustment to living with an ostomy.

Rapid Assessment of Clinical Information Systems in the Healthcare Setting

OBJECTIVE Recent legislation in the United States provides strong incentives for implementation of electronic health records (EHRs). The ensuing transformation in U.S. health care will increase demand for new methods to evaluate clinical informatics interventions. Timeline constraints and a rapidly changing environment will make traditional evaluation techniques burdensome. This paper describes an anthropological approach that provides a fast and flexible way to evaluate clinical information systems. METHODS Adapting mixed-method evaluation approaches from anthropology, we describe a rapid assessment process (RAP) for assessing clinical informatics interventions in health care that we developed and used during seven site visits to diverse community hospitals and primary care settings in the U.S. SETTING Our multidisciplinary team used RAP to evaluate factors that either encouraged people to use clinical decision support (CDS) systems or interfered with use of these systems in settings ranging from large urban hospitals to single-practitioner, private family practices in small towns. RESULTS Critical elements of the method include: 1) developing a fieldwork guide; 2) carefully selecting observation sites and participants; 3) thoroughly preparing for site visits; 4) partnering with local collaborators; 5) collecting robust data by using multiple researchers and methods; and 6) analyzing and reporting data in a structured manner helpful to the organizations being evaluated. CONCLUSIONS RAP, iteratively developed over the course of visits to seven clinical sites across the U.S., has succeeded in allowing a multidisciplinary team of informatics researchers to plan, gather and analyze data, and report results in a maximally efficient manner.