A Descriptive Study Assessing Quality of Life for Adults With a Permanent Ostomy and the Influence of Preoperative Stoma Site Marking

Diseases or anomalies of the genitourinary or gastrointestinal tract often require removal of organs and creation of an artificial opening (stoma) to allow for elimination of urine or stool. Preoperative stoma site marking can affect quality of life (QoL). A descriptive study was conducted to assess the relationship between QoL and preoperative stoma site marking in adults with a permanent ostomy.Using convenience sampling methods, 230 eligible participants attending a United Ostomy Association of America conference were invited to complete a survey of demographics regarding age, gender, time since surgeries, and ostomy type and the City of Hope National Medical Center Quality of Life Ostomy Questionnaire. The latter contains 2 sections of 30 and 43 items each that address life impact and quality of life, respectively. The researcher explained the study and provided a study packet to volunteers who were interested in participating. Volunteers were to complete the surveys over a 4-day period while at the conference; the investigator collected all study materials. Inclusion criteria stipulated study participants must be English writing/reading persons at least 18 years of age with a colostomy, ileostomy, or urostomy. All descriptive statistics (means, standard deviation, frequency, and percents) used to describe demographic and surgical history and quantitative data (logistic regression, cross-tabulation, Pearson product moment correlations, and analysis of covariance) used to determine relationships among factors were entered and analyzed using a computer software program. Of the 140 participants who met inclusion criteria and provided data, the majority (85, 60.7%) had their stoma site marked by a wound, ostomy, continence (WOC) nurse. WOC nurse marking was more likely in recent years, and WOC nurse marking was 1.03 times more likely for each year since stoma surgery (M = 13.44, SD = 13.48). Mean QoL was 7.56 (SD = 1.59, range 3.84–10.00) and was positively correlated with age (r [137] = 0.27, P = 0.001), years since first surgery (r (138) = 0.25, P = 0.003), and years since most recent surgery (r [137] =0.28, P = 0.001). The total number of surgeries was unrelated to QoL. More than 75% of the participants received preoperative marking, with a significant difference in QoL for persons marked by a surgeon (M = 7.71, SE = 0.16) or a WOC nurse (M = 8.82, SE = 0.37) versus another professional (M = 4.83, SE = 1.05) (F [3.118] = 3.44, P = 0.19). The increasing prevalence of preoperative stoma site marking by a WOC nurse over time serves as a benchmark for this centerpiece of WOC nursing practice. The findings confirm the need for stoma site marking and validate the impact of stoma site marking by the WOC nurse. 

Despite advances in medical treatment of urothelial and colorectal cancers, inflammatory bowel disease, and diverticular disease, many ostomy surgeries are still performed in the United States each year.¹ Creation of an ostomy (stoma) influences urine or fecal elimination and obliges patients to adjust to a new way of life.² Disease-specific, quality-of-life (QoL) investigations have been conducted, but research linking outcomes for patients who receive preoperative stoma site marking by a wound, ostomy, continence (WOC) nurse or another clinician with specialized training in the principles of ostomy management is sparse. Additional research is needed to provide a base of evidence for the relationships between QoL, preoperative stoma site marking, and long-term adjustment.³

Exact numbers of individuals living with a permanent stoma, or ostomy, are difficult to ascertain for a variety of reasons, including the way diseases are coded in the United States (US). Cooke¹ provided a range of estimates of individuals currently living with an ostomy (650,000 to 730,000) and further estimated that more than 120,000 ostomy surgeries are performed each year. It is believed that more than 700,000 Americans, ranging from infants to senior citizens, have had fecal or urinary ostomy surgery.⁴

In 2004, the International Ostomy Association (IOA) House of Delegates⁵ issued the “Charter of Ostomate’s Rights” for individuals with an ostomy. According to this document, individuals who undergo ostomy surgery should receive preoperative counseling and be provided with facts about living with a stoma. The individual also should have a well-constructed stoma placed at an appropriate site and receive medical support, ostomy nursing care, and psychological support during the preoperative and postoperative phases, both in the hospital and in the community.

Historically, WOC nurses have advocated for preparing patients for ostomy surgery by performing preoperative stoma site marking and providing preoperative education.³ Recently, the American Society of Colon and Rectal Surgeons, the Wound, Ostomy and Continence Nurses Society, and the American Urological Association issued joint statements advocating a preoperative visit before ostomy surgery by a WOC nurse or another qualified, experienced, educated, and competent clinician.^6,7 The preoperative visit should include assessment and education for both the individual scheduled for ostomy surgery and his/her significant others. Beginning to learn about ostomy care and ostomy appliances before surgery rather than during the immediate postoperative period is preferred. In addition to teaching about the ostomy surgery itself, selecting a site for the stoma should be a priority and should be performed during the preoperative visit.⁸ 

Management guidelines^6-8 state preoperative stoma site marking should be performed after a careful assessment of the abdomen in lying, sitting, and standing positions and should avoid folds and creases; placing a stoma in a fold, near a crease, or in a location that is not visible to the individual predisposes that person to postoperative problems that include pouch leakage, skin irritation, pain, clothing concerns, and the inability to see the stoma and be independent in self-care, issues that may lead to excessive supply use, the need for expensive customized ostomy pouches, and emotional and psychological distress.^8-11 

Surveys^12,13 of ostomates found preoperative stoma site marking can impact QoL and long-term adjustment. Person et al¹³ conducted a comparative, descriptive study to investigate the impact of preoperative stoma site marking on QoL, independence, and complication rates using a structured, validated stoma QoL questionnaire.¹⁴ Of the 105 participants (60 men and 45 women) with 60 (57%) permanent and 45 (43%) temporary stomas, 52 (49.5%) received preoperative stoma site marking and their QoL was significantly better than that of patients who did not receive preoperative stoma site marking (P <0.05), regardless of stoma type. The authors concluded preoperative stoma site marking is crucial for improving QoL, promoting independence, and reducing postoperative complications. 

Haugen et al¹² conducted a descriptive study and researched perioperative factors associated with adjustment over time in a sample of individuals with incontinent stomas in the Midwestern US. An incontinent stoma leaves the individual without the ability to control and evacuate feces, flatus, or urine at times and places considered socially acceptable.⁸ The researchers mailed a survey packet including The Ostomy Adjustment Scale¹⁵ (OAS) and a survey for demographics to 200 eligible participants; the response rate was 73% (N = 146). Using a stepwise, multivariate regression analysis of the association of perioperative factors with the OAS, the authors found certain perioperative factors to be associated with more positive ostomy adjustment, including preoperative education by a WOC nurse that was “helpful,” ostomy creation by a colon and rectal surgeon or a urology surgeon, and ongoing/recurrent illness. Preoperative education by the ostomy nurse was associated with a statistically significant improved adjustment (P = 0.04).

In a comparative, descriptive study, Marquis et al¹⁶ investigated the effect of ostomy surgery on health-related QoL using the Stoma Quality of Life Index (SQLI). The self-administered questionnaire was completed immediately after surgery and then again at 3, 6, 9, and 12 months; 4,739 patients with stomas and 618 stoma care nurses from 16 European countries responded. The Montreux Study¹⁶ included analysis of 11,097 questionnaires in 12 languages. All patients had a fairly consistent SQLI immediately after surgery. QoL was found to improve over time, but time was not the only factor to influence QoL — patient satisfaction with the care received, confidence in changing the appliance, and the patient’s relationship with the ostomy nurse all affected QoL. Patients who reported a WOC nurse took a genuine interest in them had higher QoL index scores. The authors suggested these findings support the belief that a WOC nurse exerts a positive influence on adaptation and QoL. The authors concluded by advocating for increased access to specialist care for the first 3 to 6 postoperative months.

Although preoperative stoma site marking is receiving increased attention in the literature and it is generally agreed that preoperative stoma site marking and teaching before ostomy surgery are beneficial,^17,18 documenting who provided preoperative stoma site marking (eg, a WOC nurse or another clinician with specialized training in principles of ostomy management) is important.³ Additional research is needed to provide a base of evidence for the relationships between QoL, preoperative stoma site marking, and long-term adjustment.³

The purpose of this comparative, descriptive study was to assess the relationship between QoL and preoperative stoma site marking in a sample of adults with a permanent ostomy.

Institutional review board approval was obtained from Teachers College, Columbia University, New York, NY after the proposal for dissertation research was approved. 

The investigator attended the 2009 United Ostomy Association of America (UOAA) Second National Conference in New Orleans, LA for the sole purpose of soliciting volunteers for study participation using convenience sampling methods. At the beginning of the conference, the coordinator of the UOAA informed attendees about the research and invited them to participate. A room was available for participants to complete the study any time during the 4-day conference. Interested individuals were provided a cover letter informing them participation was voluntary and anonymous, they had the right to withdraw at any time, and they could omit questions. Before surveys and consent forms were distributed, a description of the research study and participants rights was provided to each attendee by the program coordinator. 

Persons who volunteered to participate were given a consent form and survey packet. The self-report surveys were stapled into one packet and were randomly ordered.  The order was rotated to establish different sets, which then were labeled and assigned an identification number. A survey packet was handed to each voluntary participant with appropriate instructions.  

Each participant received a blue or black pen, a large brown envelope in which to place their completed survey, and a survey packet containing the City of Hope-Quality of Life-Ostomy Questionnaire¹⁹ (COH-QOL-OQ) and a Demographic Data Survey. The consents and survey packets took approximately 30 minutes for the respondent to complete. The investigator stayed available to answer any questions and collected all completed consents separately from the survey packets. Respondents placed the survey instruments in a sealed brown envelope, which the investigator collected before leaving the conference venue.  

Criteria for inclusion were: 1) age 18 years or older; 2) having a permanent colostomy, ileostomy, or urostomy; and 3) being able to read and write English.

Instruments. COH-QOL-OQ¹⁹ is a comprehensive, multidimensional, self-report instrument designed to assess QoL for individuals with intestinal ostomies. The instrument contains 2 quantitative sections: The Lifestyle Impact and the Quality of Life Impact sections. Both quantitative sections of the instrument were utilized for data collection; reliability and validity have been demonstrated on these sections.²⁰  

Lifestyle impact. The Lifestyle Impact Section consists of 31 descriptive Yes/No items organized into the following themes: 1) work-related, 2) health insurance, 3) sexual activity, 4) psychological support/concerns, 5) clothing, 6) diet, 7) time since surgery and adjustment (how long it took to be comfortable with ostomy care, diet, and how long it took your appetite to return), and 8) food groups. Each item answered Yes = 1 point and each No response = 0. 

QoL impact. The QOL Impact Section is divided into 4 domains with 43 items as conceptualized in the COH-QOL Model (see Figure 1): physical well-being (items 1 to 11), psychological well-being (items 12 to 24), social concerns (items 26 to 36), and spiritual well-being (items 37 to 43). Each item is scored using a linear analogue scale in terms of problem severity, rated from 0 to 10.²⁰ For example, respondents can rate physical strength between 0 (no problem) and 10 (severe problem). A number of items are reverse scored to protect against response bias, including items 1–12, 15, 18, 19, 22, 30, 32–34, and 37. A mean QoL score was obtained by adding all scaled times and dividing by 43. Scores range from 0 to 10, with 10 being the best quality of life.

Grant et al²⁰ reported the psychometric analysis of the revised COH QOL OQ confirmed a 4-dimensional model and established initial reliability and validity; the authors also confirmed the scale may be utilized to describe adjustment to colostomy, ileostomy, or urostomy for adults.²⁰

Demographic survey. The demographic data survey included information such as gender, year of birth, height, weight, race, and education, as well as illness/reason for surgery, years since first surgery, number of surgeries, ostomy type (colostomy, ileostomy or urostomy), and who performed preoperative stoma site marking.

Data analysis. Data were entered into the Statistical Package for Social Sciences, version 17 (SPSS, Chicago IL) and analyzed. Study variables included participant demographics, QoL scores, illness or reason for surgery, years since first surgery, number of surgeries, ostomy type (colostomy, ileostomy or urostomy), preoperative stoma site marking, and length of time to 3 adjustment points (ie, how long before they were comfortable with their ostomy, how long before they were comfortable with their diet, and how long before appetite returned).

Descriptive statistics (means, SDs, frequencies, percentages) were used to describe the demographic makeup of the sample as well as participant surgical history. Logistic regression analysis was used to determine the relationship between being marked by a WOC nurse and year of first stoma creation. Cross-tabulation analyses were conducted to determine the relationship between being marked by a WOC nurse and adjustment items from the Lifestyle Impact section. Pearson product moment correlations were used to assess the relationship between COH-QOL-OQ score and background variables of age, years since stoma was created, and years since most recent surgery. These correlations led to selection of covariates.  

Analyses of covariance (ANCOVA) with Bonferroni post-hoc tests were used to determine the relationships between QoL and preoperative stoma site marking. These outcomes were compared among 4 groups: respondents who received no preoperative stoma site marking, persons who received preoperative stoma site marking by a WOC nurse, persons who received preoperative stoma site marking by a surgeon, and persons who received preoperative stoma site marking by someone other than an ostomy nurse or surgeon. Covariates of age, number of years since first surgery, and number of years since last surgery were used in all QoL analyses.

Of the 230 packets distributed, 149 were returned (response rate of 64.8%). One-hundred, forty (140) respondents met inclusion criteria, had complete data on 1 or more independent and dependent variables, and had provided sufficient demographic data to be part of the proposed sample (age, ostomy status, and preoperative stoma site marking). One participant did not complete a significant part of the QoL section in the COH-QOL-OQ and was not included in the data analysis. In order to maximize the sample size, all 140 cases with completed demographic data questionnaires were analyzed. Demographic characteristics of the sample are summarized in Table 1. 

The vast majority of the respondents in this survey were Caucasian (134; 95.7%). The mean ages for female and male respondents were 59.06 ± 13.62 and 65.02 ± 13.06, respectively. The majority of the respondents (69.3%) reported being married before surgery; of those who had a change in marital status after surgery, 27 (84.37%) said the change was unrelated to the surgery. More than half of the respondents (61.4%) had an ileostomy and were more likely to be women; those with a colostomy were more likely to be employed full time; and those with an ileostomy were more likely to work part time or be unemployed (see Table 1). 

Slightly more than half of the sample (87, 63.0%) reported 1 surgery, and more than one third of the sample (51, 37.0%) reported multiple surgeries. The respondents reported a range of 0–62 years (M = 13.44, SD = 13.48) since their first surgery; the number of surgeries ranged between 1 and 32 (M = 2.12, SD = 3.50); and years since most recent surgery was between 0 and 58 years (M = 10.15, SD = 11.40). The majority of respondents (99, 70.7%) reported their surgery was planned; close to 75% of the respondents reported the stoma site was marked preoperatively, and most received preoperative marking by an ostomy nurse (see Table 2). 

Using year of first surgery to predict whether a WOC nurse marked the stoma site, logistic regression analysis revealed that WOC nurse marking was more likely in more recent years, (B = .031, Wald = 4.06, P = 0.04, OR = 1.032 (95% CI: 1.001, 1.064), with WOC nurse marking 1.03 times more likely for each successive year. For example, a participant having surgery in 2016 was 1.32 times more likely to be marked by a WOC nurse than someone having surgery in 2006 (10 years ago) and 1.64 times more likely than someone having surgery in 1996 (20 years ago).

Lifestyle impact: length of time to adjustment points. Cross-tabulation analyses showed a significant association between being marked preoperatively by a WOC nurse and length of time until appetite returned (Somer’s d = -0.135, T = -2.32, P  = 0.02) and length of time until patients were comfortable with their diet (Somer’s d = -0.244, T = -2.706, P = 0.007), with WOC nurse-marked patients showing earlier return of appetite and comfort with diet than patients who were not marked by a WOC nurse. For example, in terms of comfort with their diet, those marked by a WOC nurse were more likely to report feeling “immediately” comfortable (8.6% compared to 0.0% for the WOC nurse-marked and non-marked patients, respectively) and less likely to report “never feeling comfortable” (9.9% compared to 20.0% for the WOC nurse-marked and non-marked, respectively). More WOC nurse-marked participants reported their appetite returned “immediately” (10.0% compared to 0.0% for non-marked), and fewer reported it took “years” (1.3% compared to 7.3%, WOC nurse-marked versus non-marked, respectively). No association was noted between being marked by a WOC nurse and how long it took to adjust to daily care (Somer’s d = -0.126, t = -1.521, P  = 0.13).

Quality-of-life impact. Mean COH-QOL-OQ score for the total sample was 7.56 (SD 1.59, range of 3.84–10.00). QoL total was positively correlated with age (r [137] = 0.27, P  = 0.001), years since first surgery (r [138] = 0.25, P = 0.003), and years since most recent surgery (r [137] = 0.28, P = 0.001). These correlations indicate that as age, time since first surgery, and time since most recent surgery increase, scores on the QoL measure also increase. Although years since first and last surgery were highly intercorrelated, only years since first surgery and age were used as covariates in QoL analyses. Total number of surgeries was unrelated to QoL total scores (r [137] = -0.09, P = 0.29). 

Relationships between QoL and preoperative stoma site marking. The 4 groups of individuals assessed included persons who received no preoperative stoma site marking (24, 19.4%) and persons who received preoperative stoma site marking by an ostomy nurse (83, 66.9%), surgeon (15, 12.6%), or “other” person (2, 1.6%). ANCOVA analyses, controlling for age and number of years since first surgery, revealed significant differences in QoL based on who marked the site (F [3, 118] = 3.44, P = 0.019). Bonferroni adjusted post-hoc tests showed the WOC nurse-marked group (M = 7.705, SE = 0.160) and the surgeon-marked group (M = 8.185, SE = 0.374) had a higher QoL than the “other” group (M = 4.831, SE = 1.049). The surgeon-marked and WOC nurse-marked groups did not differ, and patients whose stoma was marked by a WOC nurse or surgeon had the highest QoL scores.

 The results of this descriptive study support the premise that preoperative stoma site marking is beneficial and should be done by someone qualified to perform the procedure.^6,7,10,11,21 The significant differences in QoL based on who marked the site demonstrated that the WOC nurse-marked group and the surgeon-marked group had a higher QoL than the “other” group; this evidence further supports the need for preoperative stoma site marking.^6,7   

This result is consistent with findings by Macdonald et al,²¹ who investigated the ability of surgeons to chose a stoma site against the gold standard (the ability of WOC nurses to chose a stoma site). The researchers found surgeons with a colorectal subspecialty chose sites consistent with WOC specialty nurses. In addition, persons who were not preoperatively marked or were marked by someone other than the surgeon or the WOC nurse had lower QoL scores; the authors concluded general surgeons may not be trained in stoma site marking and therefore results may be inconsistent. Stoma site marking is a skill often taught in the education, practice, and training of urologists, colorectal surgeons, and WOC nurses (ie, specialists).^10,11 

QoL scores in this investigation are consistent with the range of QoL scores reported by others using the COH-QOL-OQ. Anaraki et al²² reported a mean score of 7.48; Gemmill et al²³ reported a mean score of 7.7; and Grant et al²⁰ reported a mean score of 7.65. In general, overall QoL scores have been reported to be lower for all patients with ostomies, but comparing populations that are slightly different must be done cautiously.^24,25 The positive correlations with age, years since first surgery, and years since last surgery also are consistent with findings of others who reported QoL improves over time.¹⁶ 

Although many have investigated the impact of an ostomy on QoL, only a few have specifically examined the impact of preoperative stoma site marking on QoL. The results of this study provide a glimpse into the prevalence of preoperative stoma site marking by a WOC nurse and may be the first to document that WOC preoperative stoma site marking has increased over time. Although studies have addressed preoperative stoma site marking,¹³ preoperative education by a WOC nurse,¹² and preoperative education and stoma site marking,¹⁷ no data are available to use as a benchmark to describe the prevalence of preoperative stoma site marking by WOC nurses. 

The significant association between being marked by a WOC nurse preoperatively, length of time until patient appetite returned, and length of time until patients were comfortable with diet was an interesting and unexpected finding. Krouse et al²⁶ investigated QoL for patients with cancer and patients without cancer with a colostomy and found patients without cancer reported diet-related issues were more problematic and required dietary adjustments, including avoiding certain foods such as dairy products, vegetables, and fruits. Although many participants in both these study groups altered their diet, the authors suggested the difference might be associated with dietary changes necessary for irritable bowel disease or diverticulosis or that more patients without cancer might avoid foods such as dairy products, fruits, and vegetables.  

In the current study, more than 75% of the respondents had either Crohn’s disease or ulcerative colitis and more than 50% had an ileostomy; thus, it is possible the surgery itself led to the return of their appetite and comfort with their diet.  

Although the majority of individuals in this study were marked by a WOC nurse, preoperative education was not assessed. Haugen et al¹² reported postoperative adjustment improved with preoperative education provided by a WOC nurse.  In general, a preoperative stoma site marking session by a WOC nurse may allow time to provide education, but it is difficult to gauge the education provided and assess its impact on QoL.²⁷ Furthermore, many patients continue to require ongoing education and support long after surgery.^{9,10,12,13,16,28}  

The majority of the participants in this study belonged to an ostomy support group or another type of support group and may have had the opportunity to talk with someone else who was going to have or had an ostomy. The effects of these factors are elusive and deserve additional exploration.

Recommendations for further research include designing quantitative and qualitative studies to investigate ethnically diverse participants who are unable to travel or attend a national conference to identify variables that impact QoL. Further investigation in the form of a qualitative study might provide an additional avenue for the “voice” of the individuals with an ostomy to be heard. The voice of experience of living with an ostomy has great potential for teaching health care professionals about the individual needs for this patient population. Further investigation with regard to the elements of the preoperative visit for stoma site marking and the impact upon QoL should be undertaken. The return of appetite and comfort with diet should be further investigated to elucidate the information necessary for teaching and counseling patients with an ostomy.

Several limitations of this investigation should be considered when interpreting the results. First, the sample was limited to adults who were motivated and physically and financially able to attend the conference. A potential for bias in the results exists because most participants were Caucasian college graduates. Results of this investigation can only be generalized to individuals between the ages of 23 and 89 years old with a permanent ostomy who were represented in this sample.  

Next, the instruments in this investigation were self-report surveys; recall bias may be a factor for participants because they had ostomy surgery an average of more than 13 years before this study. Additionally, when measuring an individual’s QoL, certain items may represent different levels of importance to the respondents. It is also possible the location and nature of the conference may have had an effect with regard to the participants’ state of mind, feelings of well-being, and sense of control.

Lastly, information was not elicited about surgical specialty (ie, general surgeon, colorectal surgeon, or urologist), which is now recommended by the American Society of Colorectal Surgeons, the American Urological Association, and the Wound, Ostomy and Continence Nurses Association.^6,7 

A descriptive study was conducted to explore the relationship between QoL and preoperative stoma site marking for individuals with a permanent ostomy. The findings show living with an ostomy influences QoL. The majority of the study participants received stoma site marking, most were marked by a WOC nurse, and the prevalence of WOC nurse preoperative stoma site marking has increased over time. A significant difference in QoL was dependent on who marked the site; the surgeon-marked group and WOC nurse-marked group had the highest QoL scores when compared to the “other” group.  

The findings confirm the need for stoma site marking and validate the impact of stoma site marking by the WOC nurse. Findings of this investigation add to the current evidence base and provide a foundation for future research. Outcomes related to ostomy nursing interventions such as preoperative stoma site marking provide endless opportunity for additional research-related activities.

The author is grateful for the warm welcome she received while attending the United Ostomy Associations of America Second National Conference in New Orleans, LA, August 5–8, 2009 and the sincere interest shown this project. She thanks each and every individual who willingly and enthusiastically participated in this study and hopes this work helps improve the care provided.

Dr. Maydick is an Assistant Professor of Nursing, Long Island University, Harriet Rothkopf Heilbrunn School of Nursing, Long Island, NY.

Please address correspondence to: Diane Maydick, EdD, RN, ACNS-BC, CWOCN, 54 Valencia Avenue, Staten Island, NY 10301; email: dmaydick@gmail.com.