A randomized prospective trial of an ostomy telehealth intervention for cancer survivors.

BACKGROUND: Cancer survivors with ostomies face complex challenges. This study compared the Ostomy Self-Management Telehealth program (OSMT) versus attention control usual care (UC). METHODS: Three academic centers randomized participants. OSMT group sessions were led by ostomy nurses and peer ostomates (three for ostomates-only, one for support persons, and one review session for both). Surveys at baseline, OSMT completion, and 6 months were primary outcome patient activation (PAM), self-efficacy (SE), City of Hope quality of life-Ostomy (COH-O), and Hospital Anxiety and Depression Scale (HADS). Surveys were scored per guidelines for those completing at least two surveys. Linear mixed effects models were used to select potential covariates for the final model and to test the impact of OSMT within each timeframe. RESULTS: A total of 90 OSMT and 101 UC fulfilled analysis criteria. Arms were well-matched but types of tumors were unevenly distributed (p = .023). The OSMT arm had a nonsignificant improvement in PAM (confidence interval [CI], -3.65 to 5.3]; 4.0 vs. 2.9) at 6 months. There were no significant differences in other surveys. There was a significant OSMT benefit for urinary tumors (four SE domains). Higher OSMT session attendance was associated with post-session improvements in five SE domains (p < .05), two COH-O domains (p < .05), and HADS anxiety (p = .01). At 6 months, there remained improvements in one SE domain (p < .05), one COH-O domain (p < .05), and HADS anxiety (p < .01). CONCLUSIONS: No clear benefit was seen for the OSMT intervention, although there may be an advantage based on type of tumor. Benefit with greater session attendance was also encouraging. PLAIN LANGUAGE SUMMARY: Cancer patients with ostomies have many challenges. We tested a telehealth curriculum compared to usual care. There are indications of benefit for the program for those that attend more sessions and those with urostomies.

Intimacy and survivors of cancer with ostomies: findings from the Ostomy Self-management Training trial.

BACKGROUND: Many people with abdominal or pelvic cancers require an ostomy during surgical treatment, which can cause significant issues with physical and emotional intimacy in relationships. AIM: To evaluate the effect of a telehealth-based education program on intimacy over time for survivors of cancer with ostomies. METHODS: We performed a secondary analysis of our multicenter randomized controlled trial to determine intimacy outcomes and to compare the effects of the Ostomy Self-management Training (OSMT) program vs usual care. Partnered patients were included who provided answers to the City of Hope Quality of Life-Ostomy survey for at least 2 time points during the study. We evaluated the effect of baseline information, such as gender on intimacy. OUTCOMES: The primary outcome was intimacy, estimated by a composite score created from questions within the City of Hope Quality of Life-Ostomy survey. RESULTS: Of 216 enrolled volunteers, 131 had a partner: 68 in the OSMT arm and 63 in the usual care arm. Of these, 48 were women and 83 were men. The tumor types represented in this study were colorectal (n = 69), urinary (n = 45), gynecologic (n = 10), and other (n = 7; eg, melanoma, liposarcoma). From the cohort, 87 answered the 5 composite intimacy score questions at 2 time points, including baseline. There was significant improvement over time in composite intimacy scores for participants in the OSMT arm vs the usual care arm. CLINICAL IMPLICATIONS: Our OSMT intervention had a positive effect on factors that contribute to intimacy for survivors of cancer with ostomies, suggesting that a survivorship curriculum can improve their experiences after ostomy surgery. STRENGTHS AND LIMITATIONS: OSMT allowed for discussion of intimacy and other sensitive topics, which can be challenging. These discussions demonstrate benefit to participants and can serve as frameworks for cancer treatment providers. The focus of this work on partnered participants provides insight into the interpersonal challenges of a life with an ostomy, but it may overlook the important perspectives of nonpartnered participants and the partners themselves. Furthermore, limited power prevented us from conducting subgroup analyses exploring the effects of factors such as gender and tumor type on intimacy. CONCLUSION: At 6-month follow-up, the novel intimacy composite score indicated improvement for participants completing the OSMT intervention. Future research studies with higher power will validate this intimacy measurement and identify intimacy differences in similar populations based on tumor type.

Conversations for providers caring for patients with rectal cancer: Comparison of long-term patient-centered outcomes for patients with low rectal cancer facing ostomy or sphincter-sparing surgery.

For some patients with low rectal cancer, ostomy (with elimination into a pouch) may be the only realistic surgical option. However, some patients have a choice between ostomy and sphincter-sparing surgery. Sphincter-sparing surgery has been preferred over ostomy because it offers preservation of normal bowel function. However, this surgery can cause incontinence and bowel dysfunction. Increasingly, it has become evident that certain patients who are eligible for sphincter-sparing surgery may not be well served by the surgery, and construction of an ostomy may be better. No validated assessment tool or decision aid has been published to help newly diagnosed patients decide between the two surgeries or to help physicians elicit long-term surgical outcomes. Furthermore, comparison of long-term outcomes and late effects after the two surgeries has not been synthesized. Therefore, this systematic review summarizes controlled studies that compared long-term survivorship outcomes between these two surgical groups. The goals are: 1) to improve understanding and shared decision-making among surgeons, oncologists, primary care providers, patients, and caregivers; 2) to increase the patient's participation in the decision; 3) to alert the primary care provider to patient challenges that could be addressed by provider attention and intervention; and 4) ultimately, to improve patients' long-term quality of life. This report includes discussion points for health care providers to use with their patients during initial discussions of ostomy and sphincter-sparing surgery as well as questions to ask during follow-up examinations to ascertain any long-term challenges facing the patient. CA Cancer J Clin 2016;66:387-397. © 2016 American Cancer Society.

Clinical and Demographic Differences Among Cancer Survivors With Ostomies With and Without Informal Caregivers.

Informal caregivers have an essential role for cancer survivors (CS). There may be important clinical and demographic differences between CS with ostomies based on caregiver status. Our aim was to identify items that may lead to future recommendations and interventions for CS with ostomies. This is a secondary analysis of 216 CS with ostomies that were enrolled in a clinical trial. Baseline data collected included demographics, clinical characteristics, and surveys (patient activation, self-efficacy, City of Hope Quality of Life - Ostomy). These factors were compared based on caregiver status using chi-squared analysis and t-tests. Logistic regression was used to examine the factors that affect the likelihood of having a caregiver. Most participants had an identified caregiver (57%; 124/216). There was no difference in age based on caregiver status (mean 64.4 and 62.0 for those with and without a caregiver, respectively). Of those with a caregiver, 66.9% were males, 79.0% were partnered, and 87.1% were white. Those with caregivers had a higher prevalence of diabetes (p < 0.001), heart disease (p = 0.002), and mobility issues (p = 0.002). Survivors with caregivers had both higher incomes (p = 0.012) and levels of education (p = 0.049). The only difference in survey measures was those with a caregiver were more successful at getting help when needed (p = .045). Differences in gender and comorbidities of CS with caregivers demand further investigation. Interventions such as encouraging CS without caregivers to utilize available sources of social support, including other survivors with ostomies, may improve their care and quality of life.

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

PURPOSE: 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. METHODS: 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 5 weeks with survey administration at baseline, program completion, and 6 months 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. RESULTS: 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. CONCLUSIONS: 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.

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

PURPOSE: 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. METHODS: 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. RESULTS: 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%). CONCLUSIONS: Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.

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.

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

OBJECTIVES: Programmatic 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. METHODS: We 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. RESULTS: The 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%). CONCLUSIONS: Future 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.

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.

Adaptation of the City of Hope-Quality of Life-Ostomy Questionnaire From English to Brazilian Portuguese: A Validation Study.

PURPOSE: To culturally adapt the City of Hope-Quality of Life-Ostomy Questionnaire (COH-QOL-OQ) from English to Brazilian Portuguese and evaluate psychometric properties of the adapted instrument (internal consistency and construct validity). DESIGN: Methodological study to establish reliability and validity. SUBJECTS AND SETTING: The sample comprised 215 persons with stomas of any etiology who attended 1 of 3 specialized outpatient care center and 2 associations for persons with ostomies. Participants were residents of the state of Rio Grande do Sul, located in southeastern Brazil. METHODS: Techniques for cultural adaptation were carried out based on recommendations from the literature. We then evaluated the instrument's psychometric properties. Specifically, we evaluated construct (convergent and discriminant) validity and concurrent criterion validity via comparison of the adapted version of COH-QOL-OQ versus the WHOQOL-Bref (World Health Organization Quality of Life instrument). We also evaluated the internal consistency of the adapted COH-QOL-OQ, a measure of reliability. RESULTS: The internal consistency of the items was high with a Cronbach α of 0.92 for the total score and values ranging from 0.79 to 0.86 for the various domains of the COH-QOL-OQ. Confirmatory factorial analysis identified adjustment indexes to the acceptable model of adjustment for the COH-QOL-OQ model. Strong correlations between the COH-QOL-OQ and WHOQOL-Bref instrument domains confirmed the validity of the convergent construct. For the analysis of the concurrent criterion validity, the correlation coefficients between the score of item 16 and the other domains of COH-QOL-OQ ranged from 0.26 to 0.66. Analysis of the discriminate validity indicated that it was possible to isolate groups based on the temporal character of the stoma and time since ostomy surgery. CONCLUSIONS: The adapted version of COH-QOL-OQ demonstrates construct (convergent and discriminant) validity, concurrent criterion validity, and internal consistency (a measure of reliability) for evaluating health-related quality of life of persons with ostomies living in Brazil.

Cancer survivors' challenges with ostomy appliances and self-management: a qualitative analysis.

PURPOSE: An ostomy poses significant health-related quality of life (HRQOL) issues for cancer survivors. Survivors must learn to manage pouching appliances and adjust to the psychosocial consequences of living with an ostomy. We explored, through qualitative analysis, the challenges with self-management and ostomy appliances reported by cancer survivors. METHODS: Pooled data from two studies with a question on the greatest challenge of living with an ostomy and intervention session notes were analyzed using content analysis approach. The themes were reviewed and agreed upon by the research team, and counts were tallied for each theme based on the number of times they were mentioned by participants. RESULTS: Of the 928 greatest challenge responses and session notes, a total of 106 mentions (11%) were focused on ostomy appliances, associated repercussions, and time taken for ostomy care. Eight themes emerged: bleeding, pain, leakage, skin problems/irritation/rash, wafer-related issues, materials getting under the wafer, time to care for ostomy, and solutions to clean the stoma. Challenges described included poor wafer adherence, allergic reactions to adhesives, and pain around the stoma site. These challenges resulted in anxiety related to leakage, odor, and/or skin irritation, which negatively impacted on participation in social activities and self-confidence with ostomy care. CONCLUSIONS: Cancer survivors living with an ostomy experience multiple obstacles with ostomy appliances and caring for their ostomy. Continued innovation in ostomy appliance design and technology is needed to help cancer survivors with successfully managing ostomy care.

The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors 6 months after cystectomy.

PURPOSE: The Bladder Cancer Quality of Life Study collected detailed and sensitive patient-reported outcomes from bladder cancer survivors in the period after bladder removal surgery, when participation in survey research may present a burden. This paper describes the study recruitment methods and examines the response rates and patterns of missing data. METHODS: Detailed surveys focusing on quality of life, healthcare decision-making, and healthcare expenses were mailed to patients 5-7 months after cystectomy. We conducted up to 10 follow-up recruitment calls. We analyzed survey completion rates following each contact in relation to demographic and clinical characteristics, and patterns of missing data across survey content areas. RESULTS: The overall response rate was 71% (n = 269/379). This was consistent across patient clinical characteristics; response rates were significantly higher among patients over age 70 and significantly lower among racial and ethnic minority patients compared to non-Hispanic white patients. Each follow-up contact resulted in marginal survey completion rates of at least 10%. Rates of missing data were low across most content areas, even for potentially sensitive questions. Rates of missing data differed significantly by sex, age, and race/ethnicity. CONCLUSIONS: Despite the effort required to participate in research, this population of cancer survivors showed willingness to share detailed information about quality of life, health care decision-making, and expenses, soon after major cancer surgery. Additional contacts were effective at increasing participation. Response patterns differed by race/ethnicity and other demographic factors. Our data collection methods show that it is feasible to gather detailed patient-reported outcomes during this challenging period.

Development of a Goal Elicitation Measure to Support Choice about Urinary Diversion by Patients with Bladder Cancer.

PURPOSE: Patient centered care aims to align treatment with patient goals, especially when treatment options have equivalent clinical outcomes. For surgeries with lasting impacts that alignment is critical. To our knowledge no psychometrically tested preference elicitation measures exist to support patients with bladder cancer treated with cystectomy, who can often choose between ileal conduit and neobladder diversions. In this study we created a scale to measure how patient goals align with each type of urinary diversion and the associated surgical outcomes. MATERIALS AND METHODS: We performed formative research through focus groups and clinician outreach to adapt a goal dissonance measure. We mailed a survey to adult Kaiser Permanente® members who underwent cystectomy for bladder cancer between January 2013 and June 2015. Eligible patients were identified through electronic health records and chart review. Surveys were mailed 5 to 7 months postoperatively. We administered our 10-item decision dissonance scale along with other decision making measures. We explored goal alignment as well as dissonance. Psychometric analysis included factor analysis, evaluation of scale scores between surgery groups and evaluation with other decision making scores. RESULTS: We identified 10 goals associated with ileal conduit or neobladder diversion. Using survey data on 215 patients our scale differentiated patient goals associated with each diversion choice. On average patients with a neobladder strongly valued neobladder aligned goals such as maintaining body integrity and volitional voiding through the urethra. Patients with an ileal conduit had neutral values on average across all goals. CONCLUSIONS: Our measure lays the foundation for a simple value elicitation approach which could facilitate shared decision making about urinary diversion choice.

Diet and Behavior Modifications by Long-term Rectal Cancer Survivors to Manage Bowel Dysfunction-Associated Symptoms.

BACKGROUND: Rectal cancer (RC) survivors experience significant bowel function issues after treatment. We aimed to describe self-reported dietary and behavioral modifications among long-term (≥5 yr) RC survivors to manage bowel dysfunction. METHODS: RC survivors from Kaiser Permanente Northern California and Northwest regions completed surveys either via postage-paid return mail or telephone. Summary statistics on diet/behavioral modifications data were tabulated by proportion of responses. Modifications and frequency of bowel symptoms cited and were compared by ostomy status. RESULTS: A total of 575 respondents were included (overall response rate = 60.5%). Fruits and vegetables were troublesome for symptoms, but was also helpful in mitigating constipation, obstruction, and frequency, as well as improving predictability. Many respondents attributed red meat (17.7%), fried foods (13.9%), spicy foods (13.1%), carbonated beverages (8.0%), and sweets (7.6%) to increased diarrhea, gas, and urgency. Common behavioral modifications included controlling meal portions (50.6%), timing regularity (25.3%), and refraining from late night eating (13.8%). Permanent ostomy survivors were more likely to report symptoms of obstruction, while anastomosis survivors were more likely to report urgency. CONCLUSION: Multiple modifications were attempted by RC survivors to manage bowel symptoms. Identifying diet changes among RC survivors can improve symptom management and survivorship care.

Using the RE-AIM framework for dissemination and implementation of psychosocial distress screening.

OBJECTIVE: To evaluate the RE-AIM framework's effect on retention of participants and implementation outcomes of a 5-year cancer research education programme on psychosocial distress screening in cancer centres across the United States. METHODS: A one-group pre-/post-test design was used to evaluate the programme on participant retention and implementation outcomes at 6, 12 and 24 months after enrolling in the programme (baseline) and analysed using descriptive statistics. RESULTS: Seventy-two cancer centres participated in four cohorts. Participant retention was 100%. At baseline and 24 months, respectively, 52 (72%) and 64 (88%) of the cancer centres had formulated a psychosocial distress screening policy; 51 (71%) and 70 (98%) had started screening in more than one clinic/population; 15 (21%) and 45 (63%) had started auditing health records for documentation of screening. Each outcome rate improved at the cancer-centre level over the 24 months. CONCLUSION: RE-AIM can be used as a framework for cancer research education programmes. Future research is needed on the use of a randomised adaptive design to test the optimal support for implementation of quality care standards according to cancer centres' needs.

The City of Hope Quality of Life Stoma Questionnaire: Malayalam Translation and Validation.

BACKGROUND: Malayalam is the language spoken by 38.5 million people worldwide. There is no specific instrument to measure stoma-related quality of life (QOL) in Malayalam language. AIM: This study was designed to translate and validate the city of hope QOL (COH-QOL) Ostomy Questionnaire, which is a robust tool developed in English language. MATERIALS AND METHODS: The instrument was translated to Malayalam, abiding by internationally accepted translation methodology. Trained interviewer (first author) administered the questionnaire to patients with stoma, who were visiting the stoma clinic. The reliability of the subscales and the total scores were established by calculating correlation coefficients. Convergent and divergent validity were evaluated by calculating Pearson's correlations of each item with its own scale and other scales. RESULTS: Cronbach's alpha coefficients for all subscales were 0.70 or more. Similarly, split-half coefficients also were more than 0.70, which were acceptable. All subscales met the minimum acceptable standards of convergent and discriminant validity. Discriminant validity of all scores was less than convergent validity which suggests that there was no overlap between various constructs in measuring the same traits. The validation study of Malayalam translation of COH stoma questionnaire has shown that the tool is valid and reliable. CONCLUSION: The validation study of Malayalam translation of City of Hope Stoma questionnaire has shown the tool is valid and reliable.

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.

Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study.

PURPOSE: The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving. METHODS: We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews. RESULTS: Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving. CONCLUSIONS: Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

Ongoing ostomy self-care challenges of long-term rectal cancer survivors.

PURPOSE: Surgical treatment for rectal cancer (RC) can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive, and financial resources. However, little is known about the extent of ongoing challenges related to ostomy self-care among long-term RC survivors. We analyzed the prevalence of self-reported ostomy self-care challenges and the physical and environmental factors that can support or undermine ostomy self-care. METHODS: We mailed surveys to long-term (≥ 5 years post-diagnosis) RC survivors, including 177 adults with ostomies who were members of integrated health systems in northern California, Oregon, and Washington State. Potential participants were identified through tumor registries. Data were also extracted from electronic health records. RESULTS: The response rate was 65%. The majority of respondents were male (67%), and the mean age was 75 years. Sixty-three percent of respondents reported at least one ostomy self-care challenge. The most common challenges were leakage or skin problems around the ostomy and needing to change the pouching system too frequently. Twenty-two percent reported difficulty caring for their ostomy. Younger age and higher BMI were consistently related to ostomy self-care challenges. CONCLUSIONS: The majority of RC survivors reported ostomy-related self-care challenges, and 31% experienced problems across multiple domains of ostomy self-care. In addition, most survivors reported significant physical challenges that could lead to ostomy-related disability. Although the participants surveyed had access to ostomy care nurses, the care gaps we found suggest that additional work is needed to understand barriers to ostomy care, reduce unmet needs, and improve well-being among this group.

Predictors of Bowel Function in Long-term Rectal Cancer Survivors with Anastomosis.

BACKGROUND: Bowel function in long-term rectal cancer survivors with anastomosis has not been characterized adequately. We hypothesized that bowel function is associated with patient, disease, and treatment characteristics. METHODS: The cohort study included Kaiser Permanente members who were long-term (≥5 years) rectal cancer survivors with anastomosis. Bowel function was scored using the self-administered, 14-item Memorial Sloan-Kettering Cancer Center Bowel Function Index. Patient, cancer, and treatment variables were collected from the electronic medical chart. We used multiple regression to assess the relationship of patient- and treatment-related variables with the bowel function score. RESULTS: The study included 381 anastomosis patients surveyed an average 12 years after their rectal cancer surgeries. The total bowel function score averaged 53 (standard deviation, 9; range, 31-70, higher scores represent better function). Independent factors associated with worse total bowel function score included receipt of radiation therapy (yes vs. no: 5.3-unit decrement, p < 0.0001), tumor distance from the anal verge (≤6 cm vs. >6 cm: 3.2-unit decrement, p < 0.01), and history of a temporary ostomy (yes vs. no: 4.0-unit decrement, p < 0.01). One factor measured at time of survey was also associated with worse total bowel function score: ever smoking (2.3-unit decrement, p < 0.05). The regression model explained 20% of the variation in the total bowel function score. CONCLUSIONS: Low tumor location, radiation therapy, temporary ostomy during initial treatment, and history of smoking were linked with decreased long-term bowel function following an anastomosis. These results should improve decision-making about surgical options.