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1.  Dietary and Behavioral Adjustments to Manage Bowel Dysfunction After Surgery in Long-Term Colorectal Cancer Survviors 
Annals of surgical oncology  2015;22(13):4317-4324.
Bowel dysfunction is a known complication of colorectal cancer (CRC) surgery. Poor bowel control has a detrimental impact on survivors’ health-related quality of life (HRQOL). This analysis describes the dietary and behavioral adjustments used by CRC survivors to manage bowel dysfunction and compares adjustments used by survivors with permanent ostomy to those with anastomosis.
This mixed-methods analysis included pooled data from several studies that assessed HRQOL in CRC survivors. In all studies, CRC survivors with or without permanent ostomies (N=856) were surveyed using the City of Hope Quality of Life Colorectal Cancer tool. Dietary adjustments were compared by ostomy status and by overall HRQOL score (high versus low). Qualitative data from 13 focus groups and 30 interviews were analyzed to explore specific strategies used by survivors to manage bowel dysfunction.
CRC survivors made substantial, permanent dietary and behavioral adjustments after surgery, regardless of ostomy status. Survivors who took longer after surgery to become comfortable with their diet or regain their appetite were more likely to report worse HRQOL. Adjustments to control bowel function were divided into four major strategies: dietary adjustments, behavioral adjustments, exercise, and medication use.
CRC survivors struggled with unpredictable bowel function and may fail to find a set of management strategies to achieve regularity. Understanding the myriad adjustments used by CRC survivors may lead to evidence-based interventions to foster positive adjustments after surgery and through long-term survivorship.
PMCID: PMC4644686  PMID: 26159443
2.  “I Didn’t Feel Like I Was a Person Anymore”: Realigning Full Adult Personhood after Ostomy Surgery 
Medical anthropology quarterly  2014;28(2):242-259.
Colorectal cancer (CRC) is the third most common cancer in the United States. For some CRC patients, cancer treatment involves creating a permanent or temporary intestinal ostomy. Having an ostomy often results in complex social and physical concerns—including unpredictable and at times publicly noticeable bowel output. In this article, we discuss findings from 30 in-depth interviews with female CRC survivors with ostomies in the western United States. We highlight how having an ostomy disrupts culturally sanctioned practices of continence that mark the attainment of full-adult personhood. We discuss how survivors reclaim a sense of full personhood after ostomy surgery through a process of realignment that entails both learning how to manage ostomy equipment to conceal bowel activity and reappraising their illness and suffering. We suggest that the anthropological categories of personhood and personhood realignment be incorporated into research and interventions aimed at increasing support among cancer survivors living with bodily impairments.
PMCID: PMC5023005  PMID: 24782269
cancer survivorship; personhood; continence; adaptation
3.  Reliability and Validity of a Survey to Measure Bowel Function and Quality of Life in Long-term Rectal Cancer Survivors 
Examine reliability and validity of a specialized health-related quality of life questionnaire for rectal cancer (RC) survivors (≥5 years post diagnosis).
We mailed 1,063 Kaiser Permanente (KP) RC survivors (313 ostomy, 750 anastomosis) a questionnaire containing the Modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O), SF-12v2, Duke–UNC Functional Social Support Questionnaire (FSSQ), and Memorial Sloan-Kettering Cancer Center Bowel Function Index (BFI). We adapted certain BFI items for use by subjects with intestinal ostomies. We evaluated reliability for all instruments with inter-item correlations and Cronbach’s alpha. We assessed construct validity only for the BFI in the ostomy group, because such use has not been reported.
The overall response rate was 60.5% (577 respondents/953 eligible). Compared to nonresponders, participants were on average 2 years younger and more likely non-Hispanic white, resided in educationally nondeprived areas, and had KP membership through a group. The mCOH-QOL-O, SF-12, and FSSQ were found to be highly reliable for RC survivors. In the ostomy group, BFI Urgency/Soilage and Dietary subscales were found to be reliable, but Frequency was not. Factor analysis supported the construct of Urgency/Soilage and Dietary subscales in the ostomy group, although one item had a moderate correlation with all three factors. The BFI also demonstrated good concurrent validity with other instruments in the ostomy group.
With possible exception of the BFI Frequency subscale in populations with ostomies, components of our survey can be used for the entire population of RC survivors, no matter whether they received anastomosis or ostomy.
PMCID: PMC4236297  PMID: 24890826
Rectal cancer; health-related quality of life; HRQOL; HMOs; survivorship; ostomy; anastomosis; bowel function; abdominal stoma; psychometric properties
4.  Caregivers as Healthcare Managers: Health-Management Activities, Needs and Caregiving Relationships for Colorectal Cancer Survivors with Ostomies 
While the burdens and rewards of cancer caregiving are well-documented, few studies describe the activities involved in cancer caregiving. We employed a social-ecological perspective to explore the work of cancer caregiving for long-term colorectal cancer (CRC) survivors with ostomies. We focused on healthcare management, defined here as the ways in which informal caregivers participate in healthcare-related activities such as managing medical appointments and information, obtaining prescriptions and supplies, and providing transportation to obtain healthcare services.
This ethnographic study included 31 dyads consisting of long-term CRC survivors (>5 years post-surgery) and their primary informal caregivers. Survivors were members of integrated healthcare delivery systems. We interviewed participants using in-depth interviews and followed a subset using ethnographic methods. Medical record data ascertained survivors’ cancer and medical history.
We classified families into a matrix of healthcare management resources (high vs. low) and survivors’ healthcare needs (high vs. low). We found that patients’ healthcare needs did not always correspond to their caregivers’ management activities. CRC survivors with high needs had more unmet needs when caregivers and survivors differed in the level of caregiver involvement they desired or regarded as optimal. This discrepancy was particularly evident in non-marital relationships.
As cancer survivors age and grow in number, it becomes increasingly important to understand how informal caregivers support survivors’ well-being. Framing healthcare management as a component of caregiving provides a useful perspective that could facilitate future research and interventions to support survivors, particularly those with significant sequelae from their cancer treatment.
PMCID: PMC4372076  PMID: 24691886
long-term cancer survivors; colorectal cancer; intestinal ostomies; caregiving; ethnography; qualitative methods
5.  “Is It Worth Knowing?” Focus Group Participants’ Perceived Utility of Genomic Preconception Carrier Screening 
Journal of Genetic Counseling  2015;25:135-145.
As genome sequencing technology advances, research is needed to guide decision-making about what results can or should be offered to patients in different clinical settings. We conducted three focus groups with individuals who had prior preconception genetic testing experience to explore perceived advantages and disadvantages of genome sequencing for preconception carrier screening, compared to usual care. Using a discussion guide, a trained qualitative moderator facilitated the audio-recorded focus groups. Sixteen individuals participated. Thematic analysis of transcripts started with a grounded approach and subsequently focused on participants’ perceptions of the value of genetic information. Analysis uncovered two orientations toward genomic preconception carrier screening: “certain” individuals desiring all possible screening information; and “hesitant” individuals who were more cautious about its value. Participants revealed valuable information about barriers to screening: fear/anxiety about results; concerns about the method of returning results; concerns about screening necessity; and concerns about partner participation. All participants recommended offering choice to patients to enhance the value of screening and reduce barriers. Overall, two groups of likely users of genome sequencing for preconception carrier screening demonstrated different perceptions of the advantages or disadvantages of screening, suggesting tailored approaches to education, consent, and counseling may be warranted with each group.
Electronic supplementary material
The online version of this article (doi:10.1007/s10897-015-9851-7) contains supplementary material, which is available to authorized users.
PMCID: PMC4726717  PMID: 26093606
Genomic preconception carrier screening; Decision-making; Whole genome sequencing; Focus groups; Barriers and facilitators; Patient perspectives; Qualitative research
6.  From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies 
The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.
Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.
Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.
Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL.
Structured abstract
The current literature in CRC survivor-ship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.
PMCID: PMC4130212  PMID: 24442998
Colorectal cancer; Survivorship; Ostomy; Quality of life
7.  Multiple perspectives on clinical decision support: a qualitative study of fifteen clinical and vendor organizations 
Computerized clinical decision support (CDS) can help hospitals to improve healthcare. However, CDS can be problematic. The purpose of this study was to discover how the views of clinical stakeholders, CDS content vendors, and EHR vendors are alike or different with respect to challenges in the development, management, and use of CDS.
We conducted ethnographic fieldwork using a Rapid Assessment Process within ten clinical and five health information technology (HIT) vendor organizations. Using an inductive analytical approach, we generated themes from the clinical, content vendor, and electronic health record vendor perspectives and compared them.
The groups share views on the importance of appropriate manpower, careful knowledge management, CDS that fits user workflow, the need for communication among the groups, and for mutual strategizing about the future of CDS. However, views of usability, training, metrics, interoperability, product use, and legal issues differed. Recommendations for improvement include increased collaboration to address legal, manpower, and CDS sharing issues.
The three groups share thinking about many aspects of CDS, but views differ in a number of important respects as well. Until these three groups can reach a mutual understanding of the views of the other stakeholders, and work together, CDS will not reach its potential.
PMCID: PMC4447027  PMID: 25903564
Clinical decision support; Knowledge management; Governance; Rapid assessment process
8.  Ethnographic process evaluation in primary care: explaining the complexity of implementation 
The recent growth of implementation research in care delivery systems has led to a renewed interest in methodological approaches that deliver not only intervention outcome data but also deep understanding of the complex dynamics underlying the implementation process. We suggest that an ethnographic approach to process evaluation, when informed by and integrated with quantitative data, can provide this nuanced insight into intervention outcomes. The specific methods used in such ethnographic process evaluations are rarely presented in detail; our objective is to stimulate a conversation around the successes and challenges of specific data collection methods in health care settings. We use the example of a translational clinical trial among 11 community clinics in Portland, OR that are implementing an evidence-based, health-information technology (HIT)-based intervention focused on patients with diabetes.
Our ethnographic process evaluation employed weekly diaries by clinic-based study employees, observation, informal and formal interviews, document review, surveys, and group discussions to identify barriers and facilitators to implementation success, provide insight into the quantitative study outcomes, and uncover lessons potentially transferable to other implementation projects. These methods captured the depth and breadth of factors contributing to intervention uptake, while minimizing disruption to clinic work and supporting mid-stream shifts in implementation strategies. A major challenge is the amount of dedicated researcher time required.
The deep understanding of the ‘how’ and ‘why’ behind intervention outcomes that can be gained through an ethnographic approach improves the credibility and transferability of study findings. We encourage others to share their own experiences with ethnography in implementation evaluation and health services research, and to consider adapting the methods and tools described here for their own research.
Electronic supplementary material
The online version of this article (doi:10.1186/s12913-014-0607-0) contains supplementary material, which is available to authorized users.
PMCID: PMC4265455  PMID: 25475025
Ethnography; Qualitative methods; Mixed methods; Clinical informatics; Primary care
Psycho-oncology  2013;22(11):2513-2521.
Spiritual well-being (SpWB) is integral to health-related quality of life (HRQOL). The challenges of colorectal cancer (CRC) and subsequent bodily changes can affect SpWB. We analyzed the SpWB of CRC survivors with ostomies.
Two-hundred-eight-three long-term (≥5 years) CRC survivors with permanent ostomies completed the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O) questionnaire. An open-ended question elicited respondents’ greatest challenge in living with an ostomy. We used content analysis to identify SpWB responses and develop themes. We analyzed responses on the 3-item SpWB sub-scale.
Open-ended responses from 52% of participants contained SpWB content. Fifteen unique SpWB themes were identified. Sixty percent of individuals expressed positive themes such as “positive attitude”, “I am fortunate”, “appreciate life more”, and “strength through religious faith”. Negative themes, expressed by only 29% of respondents, included “struggling to cope”, “not feeling ‘normal’”, and “loss”. Fifty-five percent of respondents expressed ambivalent themes including “learning acceptance”, “an ostomy is the price for survival”, “reason to be around despite suffering”, and “continuing to cope despite challenges”. The majority (64%) had a high SpWB sub-scale score.
While CRC survivors with ostomies infrequently mentioned negative SpWB themes as a major challenge, ambivalent themes were common. SpWB themes often were mentioned as a source of resilience or part of the struggle to adapt to an altered body after cancer surgery. Interventions to improve the quality of life of cancer survivors should contain program elements designed to address SpWB that support personal meaning, inner peace, inter-connectedness, and belonging.
PMCID: PMC4105015  PMID: 23749460
cancer; oncology; spiritual well-being; ostomy; stoma; survivorship; HRQOL
10.  Untreated Peristomal Skin Complications among Long-Term Colorectal Cancer Survivors with Ostomies: Lessons from a Study of Family Caregiving 
This ethnography of family caregiving explored why peristomal skin complications are both common and undertreated among colorectal cancer (CRC) survivors with intestinal ostomies. We sought to identify factors that hinder or facilitate prompt detection and treatment of ostomy and skin problems. We collected data through in-depth interviews with 31 cancer survivors and their family caregivers, fieldwork, structured assessments, and medical records review. We analyzed data using qualitative theme and matrix analyses. We found that survivors who received help changing the skin barrier around their stoma had fewer obstacles to detection and treatment of peristomal skin complications. Half of the survivors received unpaid help with ostomy care. All such help came from spouses. Married couples who collaborated in ostomy care reported that having assistance in placing the ostomy appliance helped with preventing leaks, detecting skin changes, and modifying ostomy care routines. Survivors who struggled to manage ostomy care independently reported more obstacles to alleviating and seeking treatment for skin problems. Nurses who encounter CRC survivors with ostomies can improve treatment of peristomal skin problems by asking patients and caregivers about ostomy care and skin problems, examining the peristomal area, and facilitating routine checkups with a wound, ostomy and continence nurse.
PMCID: PMC4123754  PMID: 22119975
surgical stomas; family caregivers; ethnography; colorectal neoplasms; long-term survivors
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.
PMCID: PMC3951489  PMID: 23022935
Colostomy; colorectal cancer; irrigation; bowel control
12.  Surviving Colorectal Cancer: Long-Term, Persistent Ostomy-Specific Concerns and Adaptations 
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.
PMCID: PMC3536890  PMID: 23222968
13.  Changes in Body Mass Index and Stoma Related Problems in the Elderly 
Journal of geriatric oncology  2012;4(1):84-89.
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.
PMCID: PMC3564631  PMID: 24071496
Colorectal cancer; ostomy; stoma; BMI; body mass index
14.  Standard practices for computerized clinical decision support in community hospitals: a national survey 
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.
PMCID: PMC3486730  PMID: 22707744
Clinical; decision support systems; medical order entry systems
15.  A qualitative study of the activities performed by people involved in clinical decision support: recommended practices for success 
To describe the activities performed by people involved in clinical decision support (CDS) at leading sites.
Materials and methods
We conducted ethnographic observations at seven diverse sites with a history of excellence in CDS using the Rapid Assessment Process and analyzed the data using a series of card sorts, informed by Linstone's Multiple Perspectives Model.
We identified 18 activities and grouped them into four areas. Area 1: Fostering relationships across the organization, with activities (a) training and support, (b) visibility/presence on the floor, (c) liaising between people, (d) administration and leadership, (e) project management, (f) cheerleading/buy-in/sponsorship, (g) preparing for CDS implementation. Area 2: Assembling the system with activities (a) providing technical support, (b) CDS content development, (c) purchasing products from vendors (d) knowledge management, (e) system integration. Area 3: Using CDS to achieve the organization's goals with activities (a) reporting, (b) requirements-gathering/specifications, (c) monitoring CDS, (d) linking CDS to goals, (e) managing data. Area 4: Participation in external policy and standards activities (this area consists of only a single activity). We also identified a set of recommendations associated with these 18 activities.
All 18 activities we identified were performed at all sites, although the way they were organized into roles differed substantially. We consider these activities critical to the success of a CDS program.
A series of activities are performed by sites strong in CDS, and sites adopting CDS should ensure they incorporate these activities into their efforts.
PMCID: PMC3994853  PMID: 23999670
clinical decision support; knowledge management; governance; implementation; rapid assessment process
Medical care  2011;49(3):321-326.
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.
Research Design
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.
PMCID: PMC3503529  PMID: 21224741
colorectal cancer; survivorship; HRQOL; stomas; ostomies; utilities
17.  Clinical decision support in small community practice settings: a case study 
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.
PMCID: PMC3197983  PMID: 21504995
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
Oncology nursing forum  2011;38(5):587-596.
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.
PMCID: PMC3251903  PMID: 21875846
Ostomy; Colorectal Cancer; Quality of Life; Gender; Focus Groups
19.  Development and evaluation of a comprehensive clinical decision support taxonomy: comparison of front-end tools in commercial and internally developed electronic health record systems 
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.
PMCID: PMC3078666  PMID: 21415065
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
20.  Governance for clinical decision support: case studies and recommended practices from leading institutions 
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.
PMCID: PMC3116253  PMID: 21252052
21.  Recommended practices for computerized clinical decision support and knowledge management in community settings: a qualitative study 
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.
PMCID: PMC3334687  PMID: 22333210
22.  Self-Rated Health Appraisal as Cultural and Identity Process: African American Elders’ Health and Evaluative Rationales 
The Gerontologist  2006;46(4):431-438.
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.
PMCID: PMC3199224  PMID: 16920996
Self-rated health; African Americans; Qualitative methods; Self-appraisal; Identity
23.  Studying the Vendor Perspective on Clinical Decision Support 
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.
PMCID: PMC3243293  PMID: 22195058
24.  Figuring Out Sex in a Reconfigured Body: Experiences of Female Colorectal Cancer Survivors with Ostomies 
Women & health  2009;49(8):608-624.
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.
PMCID: PMC2836795  PMID: 20183104
cancer; sexuality; lifecourse; quality of life
25.  Health-Related Quality of Life Among Long-Term Rectal Cancer Survivors With an Ostomy: Manifestations by Sex 
Journal of Clinical Oncology  2009;27(28):4664-4670.
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.
PMCID: PMC2754912  PMID: 19720920

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