Ostomy Information on the Internet-Is It Good Enough?

PURPOSE: The aim of this study was to determine which internet search engines and keywords patients with ostomies utilize, to identify the common websites using these terms, to determine what aspects of information they wanted, and to perform a quality and readability assessment for these websites. DESIGN: A cross-sectional survey of persons with ostomies to identify search engines and terms, followed by a structured assessment of the quality and readability of the identified web pages. SUBJECT AND SETTINGS: The sample comprised 20 hospitalized patients with ostomies cared for on a colorectal surgical ward of a tertiary care hospital located in Melbourne, Australia. There were 15 (75%) adult males and 5 (25%) adult females; their mean age was 52.2 years. Participants were surveyed between August and December 2020. METHODS: Patients with newly formed ostomies were surveyed about which search engines and keywords they would use to look for information and for which questions regarding ostomies they wanted answers. In addition, 2 researchers then performed independent searches using the search terms identified by patient participants. These searches were conducted in August 2021, with the geographical location set to Australia. The quality of the websites was graded using the DISCERN, Ensuring Quality Information for Patients, and Quality Evaluation Scoring Tool scoring assessments, and their readability was graded using the Flesch Reading Ease Score tool. RESULTS: Participants used Google as their primary search engine. Four keywords/phrases were identified: stoma for bowel surgery, ileostomy, colostomy, and caring for stoma. Multiple web pages were identified, 8 (21%) originated from Australia, 7 (18%) were from the United Kingdom, and 23 (61%) were from the United States. Most web pages lacked recent updates; only 18% had been undated within the last 12 months. The overall quality of the online information on ostomies was moderate with an average level of readability, deemed suitable for patient educational purposes. CONCLUSIONS: Information for persons living with an ostomy can be obtained from multiple web pages, and many sites have reasonable quality and are written at a suitable level. Unfortunately, these websites are rarely up-to-date and may contain advice that may not be applicable to individual patients.

The Lived Experience of Patients with an Ostomy: A Pilot Study on the Effect of Ostomy Pouch Opacity.

OBJECTIVE: To explore the effects of ostomy pouch opacity on the lived experience of patients with ostomies in the postoperative period. METHODS: This qualitative, descriptive phenomenology study used purposive sampling to recruit seven participants who were inpatients in an acute care facility in Central Ontario, Canada, after their first ostomy surgery. Face-to-face, audio-recorded, semistructured interviews were used to collect data regarding patient experience with either a transparent or opaque ostomy pouch. Data were collected between August and November 2019. Audio tapes were transcribed verbatim and analyzed using a thematic analysis technique focused on describing patient lived experience. RESULTS: Five themes were discovered: "undercover," "fiscal consideration," "past medical experience," "self-esteem," and "functionality." Most participants focused on appliance functionality over pouch opacity in the immediate postoperative period. However, participants did describe difficulties adjusting to their new stoma and noted that an opaque pouch can improve postoperative comfort. Past exposure to medical devices, particularly in terms of their cost, may impact the decision to use a transparent or opaque pouching system. CONCLUSIONS: Pouching systems that are opaque while still allowing for assessment of the pouching contents and stoma are ideal. When this is not available, providers should consider the patient's wishes to alleviate any psychosocial effects the opacity of the pouching system may have.

Value-Based Healthcare in Ostomies.

In order to achieve significant improvements in quality, cost, and accessibility (the health "iron triangle"), innovation in organizational and service delivery models is necessary to increase the value of healthcare. The aim of this study is to evaluate the efficiency of a model of organizational innovation based on advanced practice nurse in the care of people with ostomies (APN-O) versus usual care. An observational, exploratory, analytical, prospective study with a six-month follow-up was carried out at 12 hospitals that implemented this model in Andalusia. A total of 75 patients who had undergone a digestive elimination ostomy and/or a urinary ostomy were followed for six months. Clinical outcomes, healthcare resources, health-related quality of life, and willingness to pay (WTP) were analyzed. The economic evaluation was conducted from a societal perspective, including healthcare costs and indirect costs. The cost difference between the two models was €136.99 and the quality-adjusted life year (QALY) gained was 0.05965 (€2297 per QALY gained). At six months, the mean of WTP was €69 per APN-O consultation. This model contributes to increasing the value-based healthcare in ostomies. Results of this study suggested that APN-O is an effective patient management model for improving their health status and is highly efficient.

A Prospective, Explorative Study to Assess Adjustment 1 Year After Ostomy Surgery Among Swedish Patients.

Having ostomy surgery changes a person's life. To assess adjustment to life with an ostomy and quality of life (QOL) 1 year after ostomy surgery, a prospective, explorative study was conducted among patients of a stoma clinic at a university hospital in Sweden. All consecutive patients who had undergone nonemergent or emergency surgery involving formation of an ostomy and who received regular follow-up at the ward and at the outpatient clinic during the first year by an enterostomal therapist (ET) were prospectively included in the study; their demographic information (including age, gender, diagnosis/reason for an ostomy, nonemergent or emergency surgery, ostomy type, preoperative counselling/siting [Yes/No], self-sufficiency in stoma care, professional activity, and whether they lived with a spouse/partner) was recorded upon admission to the study. Participants independently completed the Ostomy Adjustment Scale (OAS), a 36-item instrument, with each response scored from worst to best adjustment (1 to 6) for a total score ranging from 36-216. The tool addresses 5 factors: normal functioning, functional limitations, negative affect, positive role function, and positive affect. In addition, QOL was assessed using a visual analogue scale (0 to 100 mm) along with 2 open-ended QOL questions. Quantitative and qualitative data were included on the same questionnaire and were entered into an Excel file by 2 of the researchers. The quantitative data were transferred to statistical software for analysis; the qualitative data were analyzed according to Graneheim and Lundman. Descriptive statistics were used for quantitative data and based on nonparametric analysis, and qualitative data were analyzed using content analysis. Of the 150 patients eligible for inclusion (82 women, 68 men, median age 70 [range 21-90] years), 110 (73%) underwent nonemergent surgery, 106 (71%) had a colostomy, and 44 (29%) had an ileostomy. Most ostomies were created due to cancer (98, 65%) and inflammatory bowel disease (28, 19%), and 90% of participants were self-sufficient in ostomy care. The overall median score on the OAS was 162 with no significant differences between genders and diagnoses. The OAS scores for patients who did versus did not have preoperative counselling by an ET were 163 and 150, respectively (P = .313). Mean OAS scores were 136 for patients with cancer and an ileostomy and 163 for patients with cancer and a colostomy. Patients with cancer and an ileostomy had a significantly worse adjustment (mean 3.6 ± 1.32) than patients with cancer and a colostomy (mean 4.4 ± 1.21) in the factor Normal function (P = .015). Lowest adjustment scores were in the areas of sexual activities and attractiveness and participating in sports and physical activities; the highest scores concerned contact with an ET, feeling well informed, and knowing the correct methods of handling the ostomy. The median score for QOL for all patients was 76 (interquartile range 59-86). Three (3) categories emerged from the qualitative content analysis as obstacles to QOL: ostomy-related concerns and impact on life, limitations in physical and social activities, and negative impact on physical and mental health. The ET was found to have an important role in education and counselling to promote adjustment to life with an ostomy from preoperative to follow-up care. Future explorative studies are needed to determine how patients want questions about sex and sensitive issues to be designed and how the ET can best discuss sexuality and intimacy after ostomy surgery.

Patient-Reported Outcome After Ostomy Surgery for Chronic Constipation.

PURPOSE: The purpose of this study was to describe experiences of and evaluate psychosocial and health-related quality of life of individuals undergoing ostomy surgery for severe, chronic constipation. METHODS: A search of the local ostomy archive and the electronic hospital episode statistics database was performed in a large tertiary referral center. Study outcomes were evaluated retrospectively using clinical notes and prospectively via administration of the City of Hope Ostomy Quality of Life questionnaire, Medical Outcomes Study Short Form-36, Hospital Anxiety and Depression tool, and a specially designed ostomy-specific questionnaire. Questionnaires were mailed and returned via post. RESULTS: Twenty-four patients, with a median age of 44 years (interquartile range [IQR] = 31-56), who underwent ileostomy (n = 20) and colostomy (n = 4) over a 13-year period participated in the study. The vast majority of respondents (91%; n = 22) were female. Ten (41%) underwent laparoscopic surgery, 13 (54%) underwent open procedures, and 1 was converted from laparoscopic to open surgery. The mean length of stay (5.5 days vs 5.4 days) and the rate of complication did not differ between the 2 approaches. Fourteen patients (13 females, median age = 47.5 years; IQR = 23-70 years) responded to the postal questionnaires (58.3%). Adverse effects on health-related quality of life in the physical and social well-being domains were reported, and a further 86% of respondents reported psychological morbidity related to their ostomy. However, more than 70% were satisfied (median follow-up = 17 months; IQR = 0.16-8 years) with their quality of life despite a 20% reoperation rate. CONCLUSIONS: An ostomy is a justified last-resort treatment option in selected individuals with severe, chronic constipation. Patients should be warned of the negative effects on health-related quality of life and the risk of complications. We advocate using an algorithm presented in this article.

The Impact of Early Involvement in a Postdischarge Support Program for Ostomy Surgery Patients on Preventable Healthcare Utilization.

PURPOSE: To evaluate the impact of a postdischarge ostomy support program as an adjunct to nurse-led ostomy care on preventable healthcare utilization. DESIGN: A cross-sectional study. SUBJECTS AND SETTING: A postdischarge support program offered by an ostomy product's manufacturer provides persons living with an ostomy with patient-centered and easily accessible assistance. Individuals who underwent ostomy surgery within 18 months prior to the survey date were selected from an ostomy patient database maintained by the ostomy patient support program provider. Of 7026 surveys sent to program enrollees, 493 (7%) responded, compared with 225 (5%) out of 4149 surveys sent to individuals in a comparison group. The 2 groups were similar in demographics. A majority of the survey respondents were female (60% of program enrollees vs 55% of respondents in the comparison group). Among the program enrollees, 44% had colostomy, 43% had ileostomy, 10% had urostomy, and 4% had at least 2 types of ostomy surgery compared with 52%, 32%, 12%, and 4% of the respondents in a comparison group, respectively. METHODS: The study compared hospital readmission and emergency room (ER) visit rates attributable to ostomy complications between program enrollees and respondents in the comparison group. The event rates were measured in 2 study periods: within the first month of discharge and after the first month of discharge. Eligible individuals received an online survey that included the following domains: characteristics of ostomy surgery; readmissions and ER visits within the first month or after the first month of discharge, including reasons for preventable events; and level of health care access. Multivariate logistic regressions controlling for covariates were applied to investigate associations between program enrollment and ostomy-related readmission or ER visit rates. RESULTS: Logistic regression analyses showed that, when compared with respondents in the comparison group, program enrollees had a significantly lower likelihood of being readmitted and visiting the ER due to ostomy complications after the first month of hospital discharge and up to 18 months postdischarge (odds ratio [OR] = 0.45; 95% confidence interval [CI], 0.27-0.73; and OR = 0.37; 95% CI, 0.22-0.64, respectively). CONCLUSIONS: Findings suggest that enrolling patients in the postdischarge ostomy support program provides an effective approach to reducing preventable healthcare utilization.

The Ostomy-Q: Development and Psychometric Validation of an Instrument to Evaluate Outcomes Associated with Ostomy Appliances.

Using an ostomy appliance can affect many aspects of a person's health-related quality of life (HRQL). A 2-part, descrip- tive study was designed to develop and validate an instrument to assess quality-of-life outcomes related to ostomy ap- pliance use. Study inclusion/exclusion criteria stipulated participants should be 18 to 85 years of age, have an ileostomy or colostomy, used an appliance for a minimum of 3 months without assistance, and able to complete an online survey. All participants provided sociodemographic and clinical information. In phase 1, a literature search was conducted and existing instruments used to measure HRQL in persons with an ostomy were assessed. Subsequently, the Ostomy-Q, a 23-item, Likert-response type questionnaire, divided into 4 domains (Discreetness, Comfort, Confidence, and Social Life), was developed based on published evidence and existing ostomy-related HRQL tools. Seven (7) participants re- cruited from a manufacturer user panel took part in exploratory/cognitive qualitative interviews to refine the new quality- of-life questionnaire. In phase 2, the instrument was tested to assess item variability and conceptual structure, item-total correlation, internal consistency, test-retest reliability, sensitivity, and minimal important difference (MID) in an online validation study among 200 participants from the manufacturer's user panel (equally divided by gender, 125 [62.5%] >50 years old, 128 [64%] with an ileostomy). This exercise also included completion of the Stoma Quality of Life Question- naire and 2 domains from the Ostomy Adjustment Inventory-23 to assess convergent validity. Eighty-two (82) participants recompleted these study instruments 2 weeks later to assess test-retest reliability. Sociodemographic and clinical data were assessed using descriptive statistics; Cronbach's alpha was used for internal consistency (minimum 0.70), principle component analysis for item variability/conceptual structure, and item-total correlation; intraclass correlation coefficient was used for test-retest reliability; and standard error of measurement was applied to MID. All domains demonstrated good internal consistency (between 0.69 and 0.78). All scales showed stability, with a minimum intraclass correlation coefficient of 0.743 (P <.001). The Ostomy-Q showed good convergent validity with other instruments to which it was compared (P <.01). In this study, the Ostomy-Q was found to be a reliable and valid outcome measure that can enhance understanding of the impact of ostomy appliances on users. Some items for social relationships and discreetness may need more exploring in the future with other patient groups.

Executive Summary: Enhanced Recovery After Surgery: Best Practice Guideline for Care of Patients With a Fecal Diversion.

Enhanced Recovery After Surgery (ERAS) is a multimodal program developed to decrease postoperative complications, improve patient safety and satisfaction, and promote early discharge. In the province of Ontario, Canada, a standardized approach to the care of adult patients undergoing elective colorectal surgery (including benign and malignant diseases) was adopted by 15 hospitals in March 2013. All colorectal surgery patients with or without an ostomy were included in the ERAS program targeting a length of stay of 3 days for colon surgery and 4 days for rectal surgery. To ensure the individual needs of patients requiring an ostomy in an ERAS program were being met, a Provincial ERAS Enterostomal Therapy Nurse Network was established. Our goal was to develop and implement an evidence-based, ostomy-specific best practice guideline addressing the preoperative, postoperative, and discharge phases of care. The guideline was developed over a 3-year period. It is based on existing literature, guidelines, and expert opinion. This article serves as an executive summary for this clinical resource; the full guideline is available as Supplemental Digital Content 1 (available at: http://links.lww.com/JWOCN/A36) to this executive summary.

Quality of Life in United States Veterans With Combat-Related Ostomies From Iraq and Afghanistan.

OBJECTIVE: Assess the impact of ostomy formation on quality of life for U.S. Service Members. METHODS: U.S. personnel sustaining colorectal trauma from 2003 to 2011 were identified using the Department of Defense Trauma Registry. A cross-sectional observational study was conducted utilizing prospective interviews with standard survey instruments. Primary outcome measures were the Stoma Quality of Life Scale and Veterans RAND 36 scores and subjective responses. Patients with colorectal trauma not requiring ostomy served as controls. RESULTS: Of 177 available patients, 90 (50.8%) male veterans consented to participate (55 ostomy, 35 control). No significant differences were observed between ostomy and control groups for Injury Severity Score (25.6 ± 9.9 vs. 22.9 ± 11.8, p = 0.26) or mechanism of injury (blast: 55 vs. 52%, p = 0.75); nonostomates had fewer anorectal injuries (3.2 vs. 47.9%, p < 0.01). Median follow-up was 6.7 years. Veterans RAND-36 Physical and Mental Component Scores were similar between groups. About 45.8% of ostomates were willing-to-trade a median of 10 years (interquartile range = 5-15) of their remaining life for gastrointestinal continuity. At last follow-up, 95.9% of respondents' combat-related ostomies were reversed with a median duration of 6 (range = 3-19) months diverted. CONCLUSIONS: Ostomy creation in a combat environment remains safe and does not have a quantifiable impact on long-term quality of life.

Adolescent Perspectives Following Ostomy Surgery: A Grounded Theory Study.

PURPOSE: This purpose of this study was to provide a theoretical account of how adolescents aged 13 to 18 years process the experience of having an ostomy. DESIGN: Qualitative study using grounded theory design. SUBJECTS AND SETTING: The sample comprised of 12 English-speaking adolescents aged 13-18 years: 10 with an ostomy and 2 with medical management of their disease. METHODS: Respondents completed audio-recorded interviews that were transcribed verbatim. Data were analyzed using the constant comparative method until data saturation occurred. Dedoose, a Web-based qualitative methods management tool, was used to capture major themes arising from the data. RESULTS: Study results indicate that for adolescents between 13 and 18 years of age, processing the experience of having an ostomy includes concepts of the "physical self" and "social self" with the goal of "normalizing." Subcategories of physical self include (a) changing reality, (b) learning, and (c) adapting. Subcategories of social self include (a) reentering and (b) disclosing. CONCLUSIONS: This study sheds light on how adolescents process the experience of having an ostomy and how health care providers can assist adolescents to move through the process to get back to their desired "normal" state. Health care providers can facilitate the adolescent through the ostomy experience by being proactive in conversations not only about care issues but also about school and family concerns and spirituality. Further research is needed in understanding how parents process their adolescents' ostomy surgery experience and how spirituality assists adolescents in coping and adjustment with body-altering events.

Methods, levels of evidence, strength of recommendations for treatment statements for evidence-based report cards: a new beginning.

In 2001, the Journal began publishing a special feature the Evidence-Based Report Card. These articles were designed to systematically identify and review evidence pertaining to wound, ostomy and continence specialty practice and summarize recommendations for clinical practice. Based on feedback from WOCN members and Society leadership, the Journal will relaunch this popular and valuable special feature. This article describes methods used to generate Evidence-Based Report Cards, a taxonomy of levels of evidence, and criteria for ranking the strength of recommendations for treatment.