Ostomy Self-management Research Articles

Adapting to the burdens of care: a telehealth program for cancer survivors with ostomies.

An ostomy introduces to cancer survivors new demands for self-care and healthcare resource use. A curriculum that teaches ostomates self-management skills may affect survivors' use of resources. A prospective randomized trial comparing usual care (UC) with an Ostomy Self-Management Training (OSMT) program delivered by telehealth was conducted in patients with ostomies due to cancer. The intervention occurred over 5weeks with survey administration at baseline, program completion, and 6months after completion. Quantitative data were analyzed using a mixed-effects logistic model to predict mean values of resource and service use. Responses to the open-ended question were coded and analyzed with directed content analysis. One hundred and sixty-seven subjects (89 in the OSMT arm and 78 in the UC arm) completed the questionnaire at all time points. The changes in likelihoods of emptying one's ostomy bag > 8 times/week and of incurring any out-of-pocket costs on accessories were 14% greater for the intervention group (p = .029 and p = .063, respectively). Qualitative analysis reveals among the OSMT arm an increase in the proportion of ostomy-specific comments and a decrease in the same metric among the UC arm. Common themes included learning to work with equipment, dealing with gas build-up and finding well-fitting clothing. There are some indications that participants in this structured telehealth program are more active in ostomy self-care. The reported ostomy self-care activities, healthcare consumables, and healthcare services reported by both groups illustrate the complexity of survivorship care following ostomy surgery. National Clinical Trial Identifier: NCT02974634.

Development of a home health care service platform for ostomy patient management.

The use of an ostomy for urination and defecation leads to reduced quality of life. Although many ostomy management strategies are needed, such strategies are often implemented by patients. Thus, there is a need for a home health care service platform that can be used in ostomy patient management. We developed an ostomy patient management platform by identifying the needs of patients and medical staff through the Chronic Care Ostomy Self-Management Training Program in the United States and from studies conducted in Korea. The platform encompassed physical management, psychological management, maintenance of social function, spiritual stability, and home medical care. These components were implemented through monitoring, self-care guidance, and a community platform. For the monitoring function, patients entered their health status in a mobile application (app); the medical staff at the affiliated hospital then monitored the stoma status through a web interface. Our platform allows medical staff to monitor ostomy patients through a web interface and help such patients to fully manage their ostomy at home using an app. We expect that the continued development of patient-oriented functions in our app will allow ostomy patients to experience quality-of-life improvements.

Self-management goals of cancer survivors with an ostomy.

Ostomies due to cancer surgery impose complex and enduring care challenges that necessitate cancer survivors" self-management. The objective of this analysis is to evaluate ostomates' self- management goals using a qualitative approach. A multi-site randomized controlled trial testing the Ostomy Self-Management Training program (OSMT) was delivered via telehealth to a group of cancer survivors with an ostomy randomized to either the OSMT program with goal setting or usual care (UC), without goal setting. Goals were classified by type and frequency according to a modified City of Hope Health-Related Quality of Life framework (physical, psychological, social, spiritual, ostomy-specific, and healthcare quality domains), using a directed and systematic content analysis approach. The 524 self-management goals analyzed by domain frequencies physical (29.4%), ostomy specific (29.0%) and social well-being (25.0%) were predominant. Managing other health issues (7.6%), psychological issues (6.0%), and spiritual well-being issues (3.0%) were next. Common self-management themes were ostomy care independence (87.5%), handling cancer-related issues (62.5%), achieving acceptance (56.2%), resuming physical activity (43.0%), and maintaining fluid/diet balance (43.0%). Goal-setting offers insights into self-management concerns of cancer survivors with ostomies. Results demonstrate the broad aspects of self-management ostomates face. Self-management training with patient goal-setting may be used to help ostomates with cancer and their health care providers identify areas for needed education and support.

Stakeholder engagement and participation in the design, delivery, and dissemination of the ostomy self-management telehealth (OSMT) program

Stakeholder engagement is increasingly integrated into clinical research processes. We conducted a mixed methods analysis to describe stakeholders' (peer ostomates, ostomy nurses, telehealth engineers) perceptions of their engagement and participation in a multisite, randomized trial of a telehealth-delivered curriculum for cancer survivors with ostomies. Stakeholder notes were analyzed using narrative analysis. We constructed a 15-item survey that assessed the following areas: adherence to stakeholder engagement principles, engagement/influence throughout the study process, impact on perceived well-being, and satisfaction. Stakeholders were invited to complete the survey anonymously. Quantitative survey data were tabulated through summary statistics. Across intervention sessions, an average of 7.7 ± 1.4 stakeholders attended and 2.6 ± 1.4 submitted a note per session. The survey response rate was 73% (11/15). Stakeholders reported high agreement that the study adhered to engagement principles (91% reciprocal relationships, 100% co-learning, partnership, and transparency/honesty/trust). They felt highly engaged (18% moderate, 73% great deal) and that they had influence on study initiation (27% moderate, 55% great deal), intervention delivery (9% moderate, 82% great deal), fidelity assessment (18% moderate, 73% great deal), analysis and interpretation (55% moderate, 27% great deal), and dissemination (45% moderate, 45% great deal). They reported high overall satisfaction with roles (91% great deal), believed the program was helpful for participants (91%), and that serving on study team benefited their own well-being (100%). Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.

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

BackgroundAn 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.ObjectiveThis 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.MethodsThe 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.ResultsA 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.ConclusionsTelehealth 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 RegistrationClinicalTrials.gov NCT02974634; https://clinicaltrials.gov/ct2/show/NCT02974634

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

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). 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. 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). 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. NCT02974634.

Programmatic Costs of the Telehealth Ostomy Self-Management Training: An Application of Time-Driven Activity-Based Costing

ObjectivesProgrammatic cost assessment of novel clinical interventions can inform their widespread dissemination and implementation. This study aimed to determine the programmatic costs of a telehealth Ostomy Self-Management Training (OSMT) intervention for cancer survivors using Time-Driven Activity-Based Costing (TDABC) methodology. MethodsWe demonstrated a step-by-step application of TDABC based on a process map with core OSMT intervention activities and associated procedures and determined resource use and costs, per unit procedure. We also assessed per-patient costs from a payer perspective and provided estimates of total hours and costs by personnel, activity, and procedure. ResultsThe per-patient cost of the OSMT was $1758. Personnel time accounted for 91% of the total cost. Site supervisor and information technology technician time were the most expensive personnel resources. Telehealth technical and communication equipment accounted for 8% of the total cost. Intervention coordination and monitoring efforts represented most of the total time cost (62%), followed by the intervention delivery (35%). The procedures with the highest cost were communication via phone or virtual meetings (24%), email exchanges (18%), and telehealth session delivery (18%). ConclusionsFuture efforts to replicate, disseminate, and implement the OSMT intervention should anticipate funding for nonclinical components of the intervention, including coordination and monitoring, and consider how these activities can be performed most efficiently. For institutions without established telemedicine programs, selection of videoconferencing platforms and adequate staffing for participant technical support should be considered. Our step-by-step application of TDABC serves as a case study demonstrating how interventionists can gather data on resource use and costs of intervention activities concurrently with their collection of trial data.

A qualitative evaluation of a nurse-led pre-operative stoma education program for bladder cancer patients

IntroductionRadical cystectomy remains the standard of care for muscle-invasive bladder cancer and high-risk non-muscle-invasive bladder cancer. Postoperative ostomy education is common, but patients struggle to maintain self-management practices. A preoperative ostomy education program was developed to meet this need, and we conducted a qualitative study with participating patient-caregiver dyads to evaluate the educational and psychosocial impacts of the program and examine alignment with program objectives.Materials and methodsA qualitative descriptive study was conducted utilizing a thematic analysis approach. Sixteen patients, eighteen caregivers, and three program educators completed semi-structured interviews from 3 to 18 months post the program. Interviews were audio-recorded and transcribed. Thirteen end-of-course surveys from the initial educational program cohort were transcribed, coded, analyzed; this data was triangulated with patient, caregiver, and educator interviews.ResultsAnalysis uncovered three themes: (1) Patient and caregiver motivation to attend the program, (2) attitudes toward this life-changing event, and (3) education. For theme 1, patients and caregivers cited lack of knowledge, fear, and concern about ostomy surgery and care as motivation. For theme 2, there were a variety of attitudes toward the ostomy, ranging from avoidance to acceptance, and a similar breadth of attitudes toward caregiving, with some patients and caregivers describing ongoing dependence and other patients seeking complete independence. For theme 3, the interactive curriculum was determined to be effective, and the patient advocate was cited as the most memorable program component.ConclusionsA formal preoperative ostomy education program employing an interactive educational approach and featuring a patient advocate can prepare bladder cancer patients and caregivers for ostomy self-management and post-ostomy life.

Healthy behaviors are associated with positive outcomes for cancer survivors with ostomies: a cross-sectional study.

Cancer survivors (CS) with ostomies may face challenges in sustaining physical activity (PA) levels and maintaining healthy diets. This analysis describes lifestyle behaviors and their relationships with health-related quality of life (HRQOL) in CS with ostomies. This is a cross-sectional, secondary analysis of a multisite randomized self-management education trial for CS with ostomies. The baseline self-reported measures were queried on aerobic PA and diet using the City of Hope Quality of Life Ostomy measure, and the Self-Efficacy to Perform Self-Management Behaviors questionnaire (SE). PA was compared against the American Cancer Society PA guidelines for CS. Relationships between PA and HRQOL were evaluated using multiple linear regression, stratified by BMI. Among 200 responders, fewer than 20% met or exceeded the PA guideline for cancer survivors; overall, confidence in the ability to perform gentle or aerobic PA was moderate (6/10 on the SE). Overall HRQOL (p = 0.038), psychological well-being (p = 0.017), and physical strength (p = 0.025) were associated with increased PA. Almost half (48.7%) of CS reported a special diet. CS with urostomies were less likely to report diet adjustments after their ostomy surgeries (OR: 0.16, 95% CI [0.08-0.38]) than CS with fecal ostomies. Better HRQOL is associated with PA guideline achievement among CS with ostomies. Additionally, diet adjustments were reported more frequently in CS with fecal ostomies. Our findings bear clinical relevance for designing ostomy self-management and lifestyle recommendations for CS with ostomies. The evaluation of lifestyle behaviors may be an especially important focus for CS with ostomies.

Perioperative Ostomy Self-Management Telehealth for Cancer Patients and Family Caregivers

Perioperative Ostomy Self-Management Telehealth for Cancer Patients and Family Caregivers

Cancer survivors’ challenges with ostomy appliances and self-management.

e23091 Background: Ostomies adversely affect health-related quality of life among cancer survivors. Survivors and their families must engage in ostomy self-management, make substantial behavior changes, and adjust to the consequences of their condition. We explored long-term cancer survivors’ challenges with ostomy appliances and ostomy self-management. Methods: Pooled qualitative data from two studies were used. These included 1) written responses from long-term (≥5 years) rectal cancer survivors describing their greatest challenges with ostomy appliances and associated repercussions; and 2) intervention session notes and greatest challenge responses from an ongoing RCT of a telehealth intervention with ostomy survivors. Using content analysis, several coauthors reviewed all responses related to ostomy wafers/appliances and self-management techniques, and coded each by theme. The themes were reviewed and agreed upon by the research team. Counts were tallied for each theme based on the number of times they were mentioned by respondents. Results: Eight themes emerged: bleeding, pain, leakage, skin problems/irritation/rash, wafer-related issues, materials getting under the wafer, time needed to care for ostomy, and solutions to clean the stoma. Collectively, the eight themes were mentioned 106 times by respondents. Overall, the most commonly mentioned ostomy appliance problem was leakage (27%), followed by skin problems (20%), and pain (14%). For these common problems, respondents described challenges with successfully fitting the wafer to prevent leakages, poor wafer adherence to the skin area surrounding the stoma, allergic reactions to adhesives, and painful sores around the stoma site. Respondents described how their anxiety related to leakage, odor, and/or skin irritation greatly inhibited their social activities and self-confidence with ostomy self-management. Conclusions: Cancer survivors living with an ostomy experience multiple obstacles with ostomy appliances and self-management. These obstacles undermine their ability to gain confidence in caring for their ostomy. Interventions to improve self-management and self-efficacy may ease the psychological and social burden of living with an ostomy.

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

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. 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 8weeks 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. The total incremental expense per intervention cohort of 4 survivors was $7246 or $1812 per patient. A WOCN-led group self-help ostomy survivorship intervention provided affordable, effective, care to cancer survivors with ostomies.

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

PurposeAn 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. MethodsThe 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. ConclusionsThe 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.

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

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. 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. 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. 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.

Development of a Chronic Care Ostomy Self-Management Program

Each year a percentage of the 1.2 million men and women in the United States with a new diagnosis of colorectal cancer join the 700,000 people who have an ostomy. Education targeting the long-term, chronic care of this population is lacking. This report describes the development of a Chronic Care Ostomy Self-Management Program, which was informed by (1) evidence on published quality-of-life changes for cancer patients with ostomies, (2) educational suggestions from patients with ostomies, and (3) examination of the usual care of new ostomates to illustrate areas for continued educational emphases and areas for needed education and support. Using these materials, the Chronic Care Ostomy Self-Management Program was developed by a team of multi-disciplinary researchers accompanied by experienced ostomy nurses. Testing of the program is in process. Pilot study participants reported high satisfaction with the program syllabus, ostomy nurse leaders, and ostomate peer buddies.