Creation of a colostomy in colorectal (CRC) cancer patients results in a loss of control over bowel evacuation. The only way to re-establish some control is through irrigation, a procedure that involves instilling fluid into the bowel to allow for gas and fecal output. This article reports on irrigation practices of participants in a large, multi-site, multi-investigator study of health-related quality of life (HR-QOL) in long term CRC survivors. Questions about irrigation practices were identified in open-ended questions within a large HR-QOL survey and in focus groups of men and women with high and low HR-QOL. Descriptive data on survivors were combined with content analysis of irrigation knowledge and practices. Patient education and use of irrigation in the United States has decreased over the years, with no clear identification of why this change in practice has occurred. Those respondents who used irrigation had their surgery longer ago, and spent more time in colostomy care than those that did not irrigate. Reasons for the decrease in colostomy irrigation are unreported and present priorities for needed research.
Colostomy; colorectal cancer; irrigation; bowel control
The purpose of this paper is 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 eight gender- and health related Quality of life (HRQOL) stratified focus groups and 130 colorectal cancer survivors who provided written comments to two 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.
Qualitative data were analyzed for the 8 focus groups and written comments from 2 open-ended survey questions. Discussions from the focus 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.
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 re-adjust to living with an ostomy.
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.
Weight gain can cause retraction of an intestinal stoma, possibly resulting in difficulty with wafer and pouch fit, daily care challenges, and discomfort. This cross-sectional study examined the association between body mass index (BMI) and ostomy-related problems among long-term (>5 years post-diagnosis) colorectal cancer (CRC) survivors.
Materials and Methods
CRC survivors from three Kaiser Permanente Regions completed a mailed survey. The response rate for those with an ostomy was 53% (283/529). Questions included stoma-related problems and time to conduct daily ostomy care. Poisson regression evaluated associations between report of problems and change in BMI. Our analysis sample included 235 survivors.
Sample was 76% ≥65 years of age. Since their surgeries, BMI remained stable in 44% (ST), decreased in 20% (DE), and increased in 35% (IN) of survivors. Compared to ST, male IN (RR 2.15 [1.09–4.25]) and female DE (RR 5.06 [1.26–25.0]) were more likely to spend more than 30 minutes per day on stoma care. IN (vs. ST) were more likely to report interference with clothing (RR 1.51 [1.06–2.17]) and other stoma-related problems (RR 2.32 [1.30–4.14]). Survivors who were obese at time of survey were more likely to report interference with clothing (RR 1.88 [1.38–2.56]) and other stoma-related problems (RR 1.68 [1.07–2.65]).
A change in BMI is associated with ostomy-related problems among long-term CRC survivors. Equipment and care practices may need to be adapted for changes in abdominal shape. Health care providers should caution that a significant increase or decrease in BMI may cause ostomy-related problems.
Colorectal cancer; ostomy; stoma; BMI; body mass index
Computerized provider order entry (CPOE) with clinical decision support (CDS) can help hospitals improve care. Little is known about what CDS is presently in use and how it is managed, however, especially in community hospitals. This study sought to address this knowledge gap by identifying standard practices related to CDS in US community hospitals with mature CPOE systems.
Materials and Methods
Representatives of 34 community hospitals, each of which had over 5 years experience with CPOE, were interviewed to identify standard practices related to CDS. Data were analyzed with a mix of descriptive statistics and qualitative approaches to the identification of patterns, themes and trends.
This broad sample of community hospitals had robust levels of CDS despite their small size and the independent nature of many of their physician staff members. The hospitals uniformly used medication alerts and order sets, had sophisticated governance procedures for CDS, and employed staff to customize CDS.
The level of customization needed for most CDS before implementation was greater than expected. Customization requires skilled individuals who represent an emerging manpower need at this type of hospital.
These results bode well for robust diffusion of CDS to similar hospitals in the process of adopting CDS and suggest that national policies to promote CDS use may be successful.
Clinical; decision support systems; medical order entry systems
Societal preference-weighted health-related quality of life (HRQOL) scores enable comparing multi-dimensional health states across diseases and treatments for research and policy.
To assess the effects of living with a permanent intestinal stoma, compared to a major bowel resection, among colorectal cancer (CRC) survivors.
Cross-sectional multivariate linear regression analysis to explain preference-weighted HRQOL scores.
Six-hundred-forty CRC survivors (≥5 years) from three group-model HMOs; ostomates and non-ostomates with colorectal resections for CRC were matched on gender, age (±5 years), time since diagnosis, and tumor site (rectum vs. colon).
SF-6D scoring system applied to Medical Outcomes Study Short Form-36 version 2 (SF-36v2); City of Hope Quality of Life-Ostomy (mCOH-QOL-O); Charlson-Deyo comorbidity index.
Survey of CRC survivors linked to respondents’ clinical data extracted from HMO files.
Response rate was 52%. Ostomates and non-ostomates had similar sociodemographic characteristics. Mean SF-6D score was 0.69 for ostomates, compared to 0.73 for non-ostomates (p <.001), but other factors explained this difference. Complications of initial cancer surgery, and prior-year comorbidity burden and hospital use were negatively associated with SF-6D scores, while household income was positively associated.
CRC survivors’ SF-6D scores were not associated with living with a permanent ostomy after other factors were taken into account. Surgical complications, comorbidities, and metastatic disease lowered the preference-weighted HRQOL of CRC survivors with and without ostomies. Further research to understand and reduce late complications from CRC surgeries as well as associated depression is warranted.
colorectal cancer; survivorship; HRQOL; stomas; ostomies; utilities
Using an eight-dimensional model for studying socio-technical systems, a multidisciplinary team of investigators identified barriers and facilitators to clinical decision support (CDS) implementation in a community setting, the Mid-Valley Independent Physicians Association in the Salem, Oregon area. The team used the Rapid Assessment Process, which included nine formal interviews with CDS stakeholders, and observation of 27 clinicians. The research team, which has studied 21 healthcare sites of various sizes over the past 12 years, believes this site is an excellent example of an organization which is using a commercially available electronic-health-record system with CDS well. The eight-dimensional model proved useful as an organizing structure for the evaluation.
Developing/using computerized provider order entry; improving the education and skills training of health professionals; developing/using clinical decision support (other than diagnostic) and guideline systems; social/organizational study; qualitative/ethnographic field study; knowledge representations; classical experimental and quasi-experimental study methods (lab and field); designing usable (responsive) resources and systems; statistical analysis of large datasets; discovery and text and data mining methods; automated learning; human–computer interaction and human-centered computing; qualitative/ethnographic field study; clincal decision support; machine learning; knowledge bases; clinical decision support; ambulatory care; ambulatory care
To describe how gender shapes the concerns and adaptations of long-term (> 5 years) colorectal cancer (CRC) survivors with ostomies.
Qualitative study using content analysis of focus group content.
Member of Kaiser Permanente, residing in either Oregon, Southwest Washington State, or Northern California.
Four female and four male focus groups selected from quantitative survey participants with health-related quality of life (HRQOL) scores in the highest or lowest quartile.
Eight focus groups, discussed 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.
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/intimacy. Coping and adjustment difficulties were discussed by women with men only discussing these issues to a small extent. Difficulties with sleep were primarily identified by Low HRQOL women. Problems with body image and depression were discussed only by Low HRQOL women.
Common issues included diet management, physical activity, social support and sexuality. Women with low HRQOL discussed problems with depression, body image, and sleep.
Implications for Nursing
Application of these gender-based differences can inform educational interventions for CRC survivors with ostomies.
Ostomy; Colorectal Cancer; Quality of Life; Gender; Focus Groups
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.
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).
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.
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.
Developing/using computerized provider order entry; knowledge representations; classical experimental and quasi-experimental study methods (lab and field); designing usable (responsive) resources and systems; statistical analysis of large datasets; discovery; text and data mining methods; automated learning; human-computer interaction and human-centered computing; qualitative/ethnographic field study; clinical decision support; manning maddux; decision support; biomedical informatics; developing and refining EHR data standards (including image standards); controlled terminologies and vocabularies; measuring/improving patient safety and reducing medical errors; machine learning; electronic health records; meaningful use
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.
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.
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.
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.
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.
The 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.
Guided 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.
The 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.
These 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.
We explored self-rated health by using a meaning-centered theoretical foundation. Self-appraisals, such as self-rated health, reflect a cultural process of identity formation, whereby identities are multiple, simultaneously individual and collective, and produced by specific historical formations. Anthropological research in Philadelphia determined (a) how African American elders appraise their health, and (b) how health evaluations reflect cultural and historical experiences within a community.
Design and Methods
We interviewed and observed 35 adults aged 65 to 80, stratified by gender and self-rated health. We validated theme analysis of focused interview questions against the larger data set of field notes and transcripts.
Health appraisal reflected a complex process of adaptation and identity. Criteria for health included: independent functioning, physical condition, control and responsibility for health, and overall feeling. Evaluative rationales that shaped health appraisals were comparisons, restricted possibilities for self-evaluation, and ways of handling adversity. Evaluative rationales mitigated undesirable health identities (including low self-reported health) and provided mechanisms for claiming desired health identities despite adversity.
Describing the criteria and evaluative rationales underlying self-appraisals of health extends current understandings of self-rated health and illustrates the sociohistorical context of individual assessments of well-being.
Self-rated health; African Americans; Qualitative methods; Self-appraisal; Identity
In prior work, using a Rapid Assessment Process (RAP), we have investigated clinical decision support (CDS) in ambulatory clinics and hospitals. We realized that individuals in these settings provide only one perspective related to the CDS landscape, which also includes content vendors and electronic health record (EHR) vendors. To discover content vendors’ perspectives and their perceived challenges, we modified RAP for industrial settings. We describe how we employed RAP, and show its utility by describing two illustrative themes. We found that while the content vendors believe they provide unique much-needed services, the amount of labor involved in content development is underestimated by others. We also found that the content vendors believe their products are resources to be used by practitioners, so they are somewhat protected from liability issues. To promote adequate understanding about these issues, we recommend a “three way conversation” among content vendors, EHR vendors, and user organizations.
Colorectal cancer (CRC) survivors with ostomies can face complex concerns regarding sexuality. We used an anthropological perspective to examine the experiences of 30 female CRC 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.
cancer; sexuality; lifecourse; quality of life
Intestinal stomas can pose significant challenges for long-term (≥ 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.
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.
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.
Molecular data, essential for genomics research, can be captured more efficiently in large-scale, population-based biobanks of genetic material rather than by individual studies. Biobanks also offer improved quality and reliability of genetic samples and access through automated sample retrieval. However, it is challenging to adequately inform participants of the broad nature of the research and participation risks and benefits. In addition, recent studies suggest concerns about data sharing and return of research results, or future research topics (eg, stereotypical or potentially stigmatizing traits). We evaluated the interest in participating in a biobank and reasons for nonparticipation.
Clinical Decision Support (CDS) is viewed as a means to improve safety and efficiency in health care. Yet the lack of consensus about what is meant by CDS represents a barrier to effective design, implementation, and utilization of CDS tools. We conducted a multi-site qualitative inquiry to understand how different people define and describe CDS. Using subjects’ multiple perspectives we were able to gain new insights as to what stakeholders want CDS to achieve and how to achieve it even when those perspectives are competing and conflicting.
Clinical Decision Support (CDS) is viewed as a means to improve safety and efficiency in health care. Yet the lack of a consensus around what is meant by CDS represents a barrier to effective design, use, and utilization of CDS tools. We conducted a multi-site qualitative inquiry to understand how different people define and describe CDS. Using subjects’ multiple perspectives we were able to gain new insights as to what stakeholders want CDS to achieve and how to achieve it; even at times when those perspectives are competing and conflicting.
How does paper usage change following the introduction of Computerized Physician Order Entry and the Electronic Medical Record (EMR/CPOE)? To answer that question we analyzed data collected from fourteen sites across the U.S. We found paper in widespread use in all institutions we studied. Analysis revealed psychological, ergonomic, technological, and regulatory reasons for the persistence of paper in an electronic environment. Paper has unique attributes allowing it to fill gaps in information timeliness, availability, and reliability in pursuit of improved patient care. Creative uses have led to “better paper.”
Informatics interventions generally take place in rapidly changing settings where many variables are outside the control of the evaluator. Assessment must be timely so that feedback can instigate modification of the intervention. Adapting a methodology from international health and epidemiology, we have developed and refined a Rapid Assessment Process (RAP) for informatics while conducting a study of clinical decision support (CDS) in community hospitals. Using RAP, we have not only been able to provide implementers with actionable feedback, but we have also discovered that users and informaticians conceptualize CDS in vastly different ways. Further understanding of this difference will be needed if we are to improve CDS acceptance by users.
In this paper, we use the theory of distributed cognition to understand work practices in terms of the behavior of an activity system. We do so by detailing the roles that local representations of information play in the social, cognitive, organizational, and technological processes that accomplish task work. Specifically, we characterize a portion of the medication order process in an Intensive Care Unit. In this setting, the processes that execute a medication order have evolved to accomplish the primary tasks of medication administration and also to simultaneously support other important aspects of the unit’s work. Designers of systems that centralize and automate information resources must consider the diverse and latent roles played by information in order to improve design and to anticipate how their products affect complex care delivery systems.