Stoma location and ostomy-related quality of life among cancer survivors with ostomies: A pooled analysis.

INTRODUCTION: We sought to explore how stoma location may affect self-care events and health-related quality of life (HRQOL) in cancer survivors with ostomies. METHODS: A pooled dataset was obtained from three multi-site studies that used the City of Hope Quality of Life-Ostomy questionnaire. Predicted means for HRQOL and individual items were generated adjusting for sex, ostomy type, and body mass index. RESULTS: Among 607 cancer survivors, abdominal quadrant groups were: 138 (23%) upper left, 298 (49%) lower left, 51 (8%) upper right, and 120 (20%) lower right. Survivors with lower right side ostomies more frequently reported weight gain after ostomy surgery (p < 0.001). Stoma on the right side of the abdomen was associated with lower scores for issues with the skin surrounding the ostomy (p = 0.03) and satisfaction with appearance (p = 0.008). DISCUSSION: Stoma location is associated with HRQOL and difficulties adjusting to the ostomy.

Cancer survivors' greatest challenges of living with an ostomy: findings from the Ostomy Self-Management Telehealth (OSMT) randomized trial.

OBJECTIVES: An ostomy results in lifelong quality of life changes for a cancer survivor. We describe the greatest challenges reported from a randomized trial of cancer survivors with stomas (ostomies). METHODS: Cancer survivors with ostomies participating in a multi-site randomized prospective trial of an Ostomy Self-Management Telehealth (OSMT) program versus usual care (UC) were surveyed at six months post accrual. An open-ended question requested greatest challenges after ostomy surgery. Quantitative descriptive and qualitative analyses were used to examine greatest challenges reported. RESULTS: A total of 118 trial participants identified greatest challenges with 55 in the OSMT and 63 in the UC. Six conceptual domains were used to code comments-physical, psychological, social, and spiritual quality of life; ostomy-specific issues, and healthcare issues. The OSMT contributed 187 comments, and UC contributed 235 comments. Ostomy specific issues and social well-being had the most comments overall with UC contributing more comments in all domains except physical well-being. Word Clouds revealed post-operative and treatment-related issues and going out in public as the most common challenges in both groups. Word Clouds compared types of ostomies revealing bowel function challenges (colostomy group), difficulties going out in public (ileostomy group), and positive support (urostomy group). CONCLUSIONS: Fewer challenges submitted by the OSMT group provide the beginning evidence of the OSMT program impact. Dominant challenges across both groups were social well-being and ostomy care. Challenges varied by type of ostomy. Findings support long-term care and support for all cancer survivors with ostomies. TRIAL REGISTRATION: NCT02974634.

An Ostomy Self-management Telehealth Intervention for Cancer Survivors: Technology-Related Findings From a Randomized Controlled Trial.

BACKGROUND: An Ostomy Self-management Telehealth (OSMT) intervention by nurse educators and peer ostomates can equip new ostomates with critical knowledge regarding ostomy care. A telehealth technology assessment aim was to measure telehealth engineer support requirements for telehealth technology-related (TTR) incidents encountered during OSMT intervention sessions held via a secure cloud-based videoconferencing service, Zoom for Healthcare. OBJECTIVE: This paper examines technology-related challenges, issues, and opportunities encountered in the use of telehealth in a randomized controlled trial intervention for cancer survivors living with a permanent ostomy. METHODS: The Arizona Telemedicine Program provided telehealth engineering support for 105 OSMT sessions, scheduled for 90 to 120 minutes each, over a 2-year period. The OSMT groups included up to 15 participants, comprising 4-6 ostomates, 4-6 peer ostomates, 2 nurse educators, and 1 telehealth engineer. OSMT-session TTR incidents were recorded contemporaneously in detailed notes by the research staff. TTR incidents were categorized and tallied. RESULTS: A total of 97.1% (102/105) OSMT sessions were completed as scheduled. In total, 3 OSMT sessions were not held owing to non-technology-related reasons. Of the 93 ostomates who participated in OSMT sessions, 80 (86%) completed their OSMT curriculum. TTR incidents occurred in 36.3% (37/102) of the completed sessions with varying disruptive impacts. No sessions were canceled or rescheduled because of TTR incidents. Disruptions from TTR incidents were minimized by following the TTR incident prevention and incident response plans. CONCLUSIONS: Telehealth videoconferencing technology can enable ostomates to participate in ostomy self-management education by incorporating dedicated telehealth engineering support. Potentially, OSMT greatly expands the availability of ostomy self-management education for new ostomates. TRIAL REGISTRATION: ClinicalTrials.gov NCT02974634; https://clinicaltrials.gov/ct2/show/NCT02974634.

Ostomy telehealth for cancer survivors: Design of the Ostomy Self-management Training (OSMT) randomized trial.

PURPOSE: An ostomy adversely affects health-related quality of life (HRQOL) in a diverse population of cancer survivors and their caregivers. Hit-or-miss ostomy care, nurse counseling, and community referral have been the primary modes of self-management education and support in the peri-operative setting. Few evidence-based, systematic ostomy self-management programs are available to ensure optimal post-operative care. This paper describes the study design of a telehealth-based Ostomy Self-management Training (OSMT) program for cancer survivors and their caregivers. METHODS: The study is a three-year, randomized trial that tests the effectiveness of the OSMT program on survivor activation, self-efficacy, and HRQOL. The intervention integrates goal setting and problem-solving approaches to enhance survivor activation and self-efficacy to carry out ostomy care. The curriculum is delivered via four group sessions administered by trained ostomy certified nurses (WOCNs) and peer ostomates. An additional session is offered to caregivers to address their needs in relation to ostomy care. Telehealth approaches through videoconferencing are used to enhance program delivery to participants in three different geographic areas across two time zones. Participants join sessions via real-time videoconferencing from their homes. CONCLUSIONS: The OSMT program has high potential to make a positive impact on the unique physical, psychological, social, and spiritual needs of cancer survivors living with a permanent ostomy. The study design, process, and telehealth approach contributes to the success of future dissemination efforts of the intervention into diverse clinical and community settings.

Costs of an ostomy self-management training program for cancer survivors.

OBJECTIVE: To measure incremental expenses to an oncologic surgical practice for delivering a community-based, ostomy nurse-led, small-group, behavior skills-training intervention to help bladder and colorectal cancer survivors understand and adjust to their ostomies and improve their health-related quality of life, as well as assist family caregivers to understand survivors' needs and provide appropriate supportive care. METHODS: The intervention was a 5-session group behavior skills training in ostomy self-management following the principles of the Chronic Care Model. Faculty included Wound, Ostomy, and Continence Nurses (WOCNs) using an ostomy care curriculum. A gender-matched peer-in-time buddy was assigned to each ostomy survivor. The 4-session survivor curriculum included the following: self-management practice and solving immediate ostomy concerns; social well-being; healthy lifestyle; and a booster session. The single family caregiver session was coled by a WOCN and an ostomy peer staff member and covered relevant caregiver and ostomate support issues. Each cohort required 8 weeks to complete the intervention. Nonlabor inputs included ostomy supplies, teaching materials, automobile mileage for WOCNs, mailing, and meeting space rental. Intervention personnel were employed by the University of Arizona. Labor expenses included salaries and fringe benefits. RESULTS: The total incremental expense per intervention cohort of 4 survivors was $7246 or $1812 per patient. CONCLUSIONS: A WOCN-led group self-help ostomy survivorship intervention provided affordable, effective, care to cancer survivors with ostomies.

Applying the Chronic Care Model to Support Ostomy Self-Management: Implications for Oncology Nursing Practice.

BACKGROUND: Living with an ostomy requires daily site and equipment care, lifestyle changes, emotional management, and social role adjustments. The Chronic Care Ostomy Self-Management Training Program (CCOSMTP) offers an ostomy self-management curriculum, emphasizing problem solving, self-efficacy, cognitive reframing, and goal setting. OBJECTIVES: The qualitative method of content analysis was employed to categorize self-reported goals of ostomates identified during a nurse-led feasibility trial testing the CCOSMTP. METHODS: Thirty-eight ostomates identified goals at three CCOSMTP sessions. The goals were classified according to the City of Hope Health-Related Qualify of Life Model, a validated multidimensional framework, describing physical, psychological, social, and spiritual ostomy-related effects. Nurse experts coded the goals independently and then collaborated to reach 100% consensus on the goals' classification. FINDINGS: A total of 118 goals were identified by 38 participants. Eighty-seven goals were physical, related to the care of the skin, placement of the pouch or bag, and management of leaks; 26 were social goals, which addressed engagement in social or recreational roles and daily activities; and 5 were psychological goals, which were related to confidence and controlling negative thinking. Although the goals of survivors of cancer with an ostomy are variable, physical goals are most common in self-management training.

A chronic care ostomy self-management program for cancer survivors.

BACKGROUND: Individuals with ostomies experience extensive changes in health-related quality of life (HRQOL) and daily routine. Patients and families are typically forced to use trial and error to improve self-management. METHODS: This is a longitudinal one-group design pilot study of a five-session ostomy self-care curriculum based on the Chronic Care Model to improve HRQOL and self-management for cancer survivors with ostomies. Participants were surveyed to evaluate each session. Multiple instruments were administered to examine outcomes at baseline, post-intervention, and at 6-month follow-up (Patient Activation Measure, self-efficacy, Hospital Anxiety and Depression Scale, Ways of Coping, Group Health Association of America Satisfaction with ostomy care survey, and the City of Hope Quality of Life Ostomy). Changes from pre-intervention to post-intervention and pre-intervention to follow-up were evaluated with paired t-tests. Text responses were coded and evaluated for important themes and recommendations. RESULTS: Thirty-eight subjects participated in the study. Most had a history of rectal cancer (60.5%) or bladder cancer (28.9%). Participants rated the overall program high (4.4-4.8 on 5-point scale). Text feedback indicated that participants enjoyed the group forums, wanted more participants, and more hands-on training. Scores on multiple surveys were shown to be improved and sustained, including patient activation (p = 0.0004), self-efficacy (p = 0.006), total HRQOL (p = 0.01), physical well-being (p = 0.005), and social well-being (p = 0.002). Survivor anxiety was significantly reduced by follow-up (p = 0.047). CONCLUSIONS: This self-management ostomy program can help cancer survivors with ostomies adapt to their stoma. Initiating this program in the community setting would be beneficial to many cancer survivors.

Colostomy Irrigation: Issues Most Important to Wound, Ostomy and Continence Nurses.

PURPOSE: The purpose of this study was to describe issues that WOC nurses find most important related to colostomy irrigation (CI). DESIGN: This is an additional analysis of a study focusing on qualitative responses to a survey querying WOC nurses about CI practices. SUBJECTS AND SETTING: The target population was members of the Wound, Ostomy and Continence Nurses Society. Of the 985 nurses who responded to the survey, 338 (34.3%) answered the optional open-ended question asking for additional comments. METHODS: A 1-time online survey was conducted. In addition to demographic, educational information, and forced-choice questions about CI, an open-ended question asked for any additional comments about their experience with irrigation and WOC practice. Content analysis was used to identify common themes identified by WOC nurses. RESULTS: Three hundred thirty-eight out of 985 WOC nurses (34.3%) answered the optional open-ended question asking for additional comments; analysis for this study is based on these responses. WOC nurses who responded to the open-ended question had similar characteristics to those who responded to the entire survey but were significantly more experienced (15.1 vs 11.0 years; P < .001). Multiple themes were identified that were related to forced-choice questions in the survey, such as equipment, lack of teaching time, and increased control, while several new themes emerged, including age-related recommendations, economic/ecologic benefits, cultural implications, and misconceptions of CI. CONCLUSION: Many WOC nurses feel that CI is a valued modality of ostomy care and should be reestablished, although dissenting opinions were expressed. Additional research to increase the evidence base for this procedure is needed. New opportunities to educate WOC nurses and other healthcare professionals and teach eligible patients irrigation techniques are recommended.

Colostomy irrigation: current knowledge and practice of WOC nurses.

PURPOSE: This study builds on the authors' previous studies that demonstrate that persons living with a colostomy who practice colostomy irrigation (CI) experience quality-of-life benefits. Studies also reveal that patients may not be taught about CI. The purpose of this study was to determine current knowledge, attitudes, and practices of WOC nurses on CI. SUBJECTS: The target population was ostomy nurses who were members of the Wound, Ostomy and Continence Nurse's Society. Nine hundred eighty-five nurses out of a possible pool of 4191 members responded, providing a response rate of 24%. Their average age was 53 years (range, 25-79 years). Respondents averaged 12 years' experience as a WOC nurse (range, 1-40 years) and 90% (n = 875) were certified. Participants practiced in a variety of settings, including acute and long-term care facilities, home health, and ambulatory clinics. They saw an average of 37 ± 60.5 (mean ± SD) ostomy patients per year (range, 0-1100). METHODS: A 1-time online survey (SurveyMonkey) of members of the Wound, Ostomy and Continence Nurses (WOCN) Society was conducted. In addition to demographic and educational information, questions also included (1) CI advantages and disadvantages; (2) CI content routinely taught; (3) challenges in assisting patients to learn CI; and (4) where preparation was received for teaching this procedure. Nurses were asked whether they believe CI is evidence-based. RESULTS: More than half identified irrigation as an evidence-based practice (59%), but half indicated they do not routinely teach CI. Multiple factors correlated with nurses' decisions to teach CI, including years of experience (P = .03), specific CI education (P < .001), and considering the intervention evidence-based (P < .001). CONCLUSION: Factors influencing CI instruction are multifactorial; they include nurses' attitudes, experience base, education, medical indications, setting characteristics, and patient interest and physical abilities. Education on this procedure is urgently needed for ostomy nurses unprepared and/or unfamiliar with CI, as well as staff nurses in acute care units who could offer accurate information and additional resources to patients to increase their informed decisions.