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.  

Undergoing ostomy surgery inflicts major change in a person’s life. Losing control of fecal elimination can lead to trauma, with feelings of frustration and loss. Having ostomy surgery requires adaptations to changes in daily life and can affect self-image and body image owing to concerns about intimacy and sexuality. For some persons, the stoma also may change their work situation and social life.^1-5 These consequences of ostomy surgery have been addressed in different types of studies, such as qualitative interviews,¹ cross-sectional questionnaires,² reviews,³ descriptive questionnaires,⁴ and qualitative meta-synthesis⁵ and observed by enterostomal therapists (ETs) in daily practice. The estimated number of persons with an ostomy is between 750 000 and 1 000 000 in the United States⁶ and 43 000 in Sweden.⁷

Andrews and Roy^8,9 described adaptation as a process in which people use conscious awareness and choice to create integration. They state health is the process of being and becoming an integrated and whole person. Their goal for nursing is the promotion of adaptation in 4 modes: physiological, self-concept, role function, and interdependence, which contributes to the person’s health and quality of life (QOL). A person with an ostomy will experience a change in bodily functions and, based on his or her level of adaptation, respond to that change in either a positive or negative way. 

A prospective, single-center study from Israel¹⁰ including 105 patients (median age 65 years, 57% men) undergoing nonemergent surgery between 2006 and 2008 compared independence parameters and QOL in patients that were sited previous to ostomy surgery to persons that were not and described patients’ ability to manage their stoma by themselves as an important factor in their adaptation to the new situation. The independence parameters and QOL were shown to be significantly lower in patients whose stoma was not preoperatively sited. For the patient to be able to manage the ostomy, the ostomy must be well-constructed and in a place where it is visible to the patient. 

Four (4) prospective studies (1 British,¹¹ N = 3970; and 3 Swedish^12-14, including 180, 144, and 207 patients, respectively) have shown when the ostomy height is too low, patients will experience peristomal skin complications. The British study¹¹ was conducted 3 weeks after surgery in patients from 93 ostomy care services; 34% of the ostomies were evaluated as problematic, and ostomy height had the greatest individual influence on the incidence of problematic ostomies. In 1 Swedish study¹² following 180 patients (colostomy [n =122], median age 69 years; loop ileostomy [n = 38], median age 61 years; and ileostomy [n=20], median age 59 years) during the 2 years after surgery almost all patients with an end ileostomy or loop ileostomy with an ostomy height <20 mm had leakage and skin problems, as did half of the patients with an end colostomy and an ostomy height <5 mm. Similar results were seen in patients undergoing acute abdominal surgery, where the researchers prospectively evaluated ostomy-related complications and ostomy configuration in 144 patients (median age 67 years) and where 21% to 57% of patients with a low ostomy had peristomal skin problems during the first 2 weeks. Another Swedish study¹⁴ evaluated stomal and peristomal complications after regular follow-up (5 times) by an ET 1 year after surgery in 207 patients (median age 70 [range 19–94] years, 53% women). The use of convexity was significantly more common among patients with a colostomy height of ≤5 mm than patients with stomas >5 mm. These studies demonstrate the potential for stomal and peristomal skin complications. A systematic review¹⁵ that included 4 cross-sectional studies (number of patients not reported) and 3 longitudinal studies (N = 5037) found that patients with severe peristomal skin complications, severe leakage, and severe problems adjusting to the ostomy were noted to have significantly lower Health-Related Quality of Life (HRQOL) scores than patients reporting less severe or no problems. 

A recently published, population-based, cross-sectional Danish study¹⁶ including 644 patients with an ostomy because of rectal cancer (median age 72 years, 64% men) reported 41% of participants had skin complications and 59% had leakage. In >65% of these patients, the ostomy had an impact on QOL; the authors concluded patient counselling and follow-up regarding complications needed to be improved. An Australian qualitative, unstructured interview study¹ explored men’s and women’s experiences adapting to a stoma. The study included 18 patients who completed interviews plus an additional 14 participants who answered questionnaires. Mean age was 45 years, and time since surgery ranged from 6 months to 42 years. Regular follow-up regarding ostomy complications and emotional support and counselling in the new situation were shown to be the motivation for wanting to adapt to life with an ostomy. Similar results were seen in a cross-sectional Swedish questionnaire study² using the validated Quality of Care from the Patient’s Perspective questionnaire in 91 patients with a colostomy (mean age 69 [range 42–87] years, 26 women/23 men) or ileostomy (mean age 49 [range 20–92] years, 25 women/17 men) due to rectal cancer or inflammatory bowel disease (IBD). 

A study that focused on sexual issues for patients with ostomies³ has shown that how people with a stoma adapt to the changes imposed by ostomy surgery is critical to their health, sexuality, and mental and physical well-being. Findings from the review by Pittman et al¹⁵ aiming to determine the influence of intestinal ostomy surgery on HRQOL showed impairment regarding HRQOL domains and was most severe during the immediate postoperative period and continued to rise steadily during the first postoperative year. A recently published cross-sectional study¹⁷ from Norway including 158 patients (56% men) showed the degree of ostomy-specific adjustment measured with the Ostomy Adjustment Scale (OAS) appeared to be an important predictor for HRQOL (Short Form-36) and overall QOL in patients with an ostomy. Junkin and Beitz³ reported men and women experience similar fears associated with the ostomy such as noise, odor, leakage, and that their partners will leave them. These problems are often more pronounced in the later adaptation process, when the patient’s postoperative phase and possible treatment are complete. The ET is known to have an important role in improving patients’ adaptation during pre- and post-recovery and in the follow-up period. 

One (1) year after ostomy, surgery patients can be expected to have recovered from their surgery and additional treatments and start their journey toward a new life. The aim of the present study was to describe patients’ adjustment to life with an ostomy 1 year after surgery and to identify patients with a lower adjustment score. A further aim was to assess and describe obstacles to achieving QOL.

Setting and patients. A prospective, exploratory study to assess adjustment to life with an ostomy and QOL 1 year after ostomy surgery was conducted among consecutive patients treated at the University Hospital outpatient stoma care clinic at one of the largest colorectal units in Sweden from September 2009 to March 2012. Four (4) ETs were responsible for the stoma care clinic. All patients who had undergone nonemergent and emergency surgery for the formation of a colostomy, end ileostomy, or loop ileostomy were included in the study. The included patients had regular postoperative follow-up by an ET on the ward and at the outpatient clinic at intervals of 10 to 14 days postdischarge and 6 weeks, 3 months, 6 months, and 1 year post surgery. Patients who were re-operated during their first year postsurgery, patients with a urostomy, patients with double ostomies, and patients with cognitive impairment were excluded. An interpreter or a significant other able to translate the questions was permitted for patients who were unable to understand Swedish. Eligible patients received oral and written information about the study from the ET at the 1-year follow-up. 

Upon receipt of their voluntary and written consent, participants were given a paper-and-pencil questionnaire to answer in a quiet space at the hospital or at home. The completed questionnaire either was placed in the designated hospital mailbox or returned in a prepaid envelope. Patients had 4 weeks to respond. Persons who did not answer the questionnaire by the first deadline received a reminder. Patient confidentiality was ensured using a unique code entered on the OAS questionnaire (not the patient name) and into a case report form with clinical data; data were confidential but not anonymous to facilitate follow-up. The coding list was separately stored in a locked cabinet. Demographic and study variables were recorded by the ET responsible for administering the questionnaire to the patient at the 1-year follow-up appointment on a specially designed case report form at admission to the study and included age, gender, diagnosis/reason for ostomy, nonemergent or emergency surgery, type of ostomy, preoperative counseling (Yes/No), self-sufficiency in stoma care, professional activity, and living with a spouse/partner (Yes/No). 

Preoperative counselling and follow-up by the ET nurse. Nonemergently operated patients had one session of preoperative counselling with the ET nurse, at which time the ostomy also was sited. Each patient had a designated ET from preoperative period to follow-up. The ET provided at least 1 patient education session postoperatively, which included advice on managing the ostomy (elimination and changing appliance routines), skin care instruction, diet recommendations, intimacy advice, and how to make life work with an ostomy (work, travel, social activities, and sport and physical activities), and one discharge consultation. Through conversation with the patient and observation at successive follow-ups, the ET continued to assess the patients’ ability to manage the ostomy on their own (ie, patients were asked to demonstrate appliance application and removal). In addition, the ET and the patient observed the peristomal skin to rule out peristomal skin complications, discussed changing routines and elimination, and evaluated how well the patient had been able to incorporate the ostomy into daily life, including psychological issues such as coping with the ostomy and concerns regarding sex. 

Questionnaire. Adjustment was evaluated using the OAS.¹⁸ The OAS is a questionnaire designed to assess respondents’ adjustment to the physical, psychological, and social changes that occur after ostomy surgery. The original version consisted of 34 items. The questionnaire has been validated in English¹⁹ and translated into Swedish and validated in a Swedish population, with 2 items regarding contact with an ET nurse added.²⁰ The 36 items are rated on a 6-point Likert scale ranging from disagree sharply to agree completely. The possible score for each item ranged from 1 to 6 (worst to best adjustment), with possible total scores ranging from 36 to 216. 

The OAS addresses 5 factors¹⁹: Factor 1 is normal functioning (items 1, 2, 4, 5) despite the ostomy, Factor 2 is functional limitations (items 3, 6, 9, 27, 29, 30, 32), Factor 3 is negative affect (items 10, 11, 16, 17, 26), Factor 4 comprises positive role function (items 7, 8) and negative feeling about the body (item 13), and Factor 5 is overall a positive affect factor (items 15, 24, 33, 34). 

Quality of life. Patients were asked to give a personal definition of good QOL²¹ by responding to the statements, “Describe what you think contributes to a good QOL” and “Describe what you think is an obstacle to good QOL.” Participants could give multiple answers to the questions. An additional question was posed: “How do you perceive your QOL today?” Responses were scored on a visual analogue scale (VAS) from 0 to 100 mm where 0 indicates the worst possible and 100 the best possible score. 

Data and statistical analysis. The complete questionnaire included the 36 OAS questions, the VAS question about QOL (quantitative data), and 2 open-ended questions (qualitative data). The quantitative data from the questionnaires were entered into an Excel file (Microsoft Corp, Redmond, WA) by 2 of the researchers. Analyses of patients’ descriptions of QOL were conducted using qualitative content analysis according to Graneheim and Lundman.²² The qualitative data were analyzed using Excel for Mac, 2011 Version 14.6.9(Microsoft Corp, Redmond, WA). Responses to each questionnaire were read several times to obtain an overall picture of the content. Two (2) of the authors served as evaluators, searching the responses for words and phrases regarding obstacles to QOL that were relevant to participants’ experiences of living with an ostomy. The evaluators classified words, sentences, or paragraphs containing related content into what were defined as meaning units, which they subsequently condensed, abstracted, and labelled with a code. The various codes then were sorted into categories. The other authors had a validating role throughout the analysis process until consensus regarding the categories was reached.

Descriptive statistics of quantitative data were reported as mean, standard deviation (SD), median, interquartile range (IQR), and range based on the level of measurement for the outcome variable. Because the data were not normally distributed, they were based on nonparametric analysis techniques. Continuous variables were analyzed using the Mann-Whitney U test. Categorical data were analyzed with Fisher’s exact test and chi-squared test. A P value <.05 was considered significant. For missing items in the OAS, the average score was calculated and substituted for the mean overall score if at least half of the items were answered. The Pearson correlation coefficient was used to explore associations between the total OAS score and VAS. Quantitative data were analyzed using SPSS Statistics for Windows, Version 22.0 (IBM Corp, Armonk, NY).

Ethical considerations. The patients were informed of the study orally and in writing at the outpatient clinic at the 1-year follow-up appointment and gave their informed consent in writing. Patient confidentiality was secured by a unique code entered on the OAS questionnaire and into a case report form with clinical data. The research project was approved by the regional ethical review board in Gothenburg Reg. no. Ö176-03) and followed the Declaration of Helsinki guidelines. 

Clinical data. Of the 189 patients who were eligible for inclusion, 153 (81%) agreed to participate and completed the questionnaires. No significant difference was noted between the 36 patients that did not respond to the questionnaires regarding gender and age, although they were slightly younger (median age 64 [range 19–89] years compared to 70 [range 21-90] years; P = .094). Three (3) of the patients answered fewer than half of the questions in the questionnaire and were excluded from the analysis. Thus, the study population consisted of 150 patients (79% of the total population), comprising 82 women and 68 men with a median age of 70 (range 21–90) years. Of these, 96 (64%) were living with a partner and 110 (73%) had undergone nonemergent surgery. More than half of the participants (98, 65%) had a diagnosis of cancer and 28 (19%) had IBD. The majority (106, 71%) had a colostomy, among which 79 (75%) were age 65 to 90 years, and the most common diagnosis/reason for the colostomy was colorectal cancer (81, 76%). In contrast, patients with an ileostomy (44, 29%) were mostly 20 to 64 years old and the most common diagnosis was IBD (23, 52%). The majority (90%) of all the participants could manage the ostomy by themselves (see Table 1). 

Ostomy adjustment. The overall median score on the OAS was 162 (IQR 134–183), which was 75% of the maximum score. No statistically significant differences in OAS scores were noted between men and women or regarding the different diagnoses (cancer, IBD, others). The median OAS scores by ostomy type included colostomy 164 (IQR 136–185), 76% of the maximum score, and ileostomy 151 (IQR 127–182), 70% of the maximum score; P <.282. The median OAS score was 136 (63% of maximum score) for patients with an ileostomy due to cancer compared to 163 (75% of maximum score) in patients with a colostomy due to cancer (P = .129). The OAS for patients who had preoperative counselling by an ET was 163 (75% of the maximum score) compared to 150 (69% of the maximum score) for patients who were not counselled (P = .313). Table 2A and 2B shows the scores for the individual OAS items. 

The items with the lowest and highest OAS score. The OAS item scores for the whole group were lowest/worst (mean <4) for the following 8 items (item descriptions are truncated; items with an asterisk were scored in reverse): 

8: “enjoy sexual activities” (2.1); 

7: “able to work” (2.9); 

27: “not as sexually attractive” (3.0)*; 

5: “participate in sports and physical activities” (3.6);

3: “many things I would like to do with no ostomy” (3.6)*; 

6: “limit the number of activities” (3.7)*; 

30: “worry something embarrassing will occur in connection with normal sexual activity” (3.9)*; and 

9: “lack of self-confidence because of ostomy” (3.9)*.

The highest/best scores (mean >5) were for the following 7 items: 

21: “well informed about ostomy” (5.5);

36: “I avoid telling my ET about changes in ostomy and function” (5.4)*; 

34: “the ostomy reminder of receiving good medical care” (5.2); 

20: “I avoid telling doctor about changes in ostomy and function” (5.2)*; 

11: “At times resent friends who do not have an ostomy” (5.2)*; 

35: I feel like a complainer when have to contact my ET about ostomy” (5.2)*; and 

22 “convinced of knowing the correct methods of handling ostomy” (5.1). 

Factor distribution of the OAS. Figures 1, 2, and 3 present the results of the OAS factor distribution (Factors 1–5). Patients with an ileostomy had lower scores in the factors Normal functioning, Functional limitations, and Positive role function compared to patients with a colostomy. Physical role function was lower for patients with cancer. When dividing the study population in different age groups, Functional limitations and Physical role function were lower for the age groups 45–64 years and 65–74 years. 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) (no figure shown).

Quality of life (VAS). The median QOL score for all patients was 76 (IQR 59–86). Patients with an ileostomy had a median score of 70 (IQR 54–81) versus a median score of 77 (IQR 61–87) for persons with a colostomy. The Pearson correlation between the total score of the OAS and QOL was r = 0.519 (P <.0001). For patients in the 25th percentile of the OAS total score, the median value for QOL on VAS was 56, whereas in the rest of the study population it was 80. The patients in the 25th percentile were >65 years (70%); more patients had undergone emergency surgery and 38% had an ileostomy in the 25th percentile versus 25% in the rest of the study population.

QOL open-ended questions. Of the 150 participants who answered the OAS, 101 (67%) answered the open-ended questions about QOL. The responses pertaining to good QOL concerned good health, having a normal life, socializing with family and friends, and having rewarding leisure time. Patients provided indepth answers regarding obstacles to QOL that included sentences (not just a few words); these were analyzed using manifest content analysis.³ Three (3) categories emerged from the qualitative content analysis as obstacles for QOL: ostomy-related concerns and impact on life, limitations in physical and social activities, and negative impact on physical and mental health. 

Ostomy-related concerns and impact on life. Concerns directly related to the ostomy included fear of leakage, shame about noise and odor, and not feeling fresh. Some participants were also concerned about frequent visits to the bathroom. One (1) participant described having a limited choice of clothes when going to a party, and another mentioned not being able to eat good food. The stoma also was described as a horrible disease by 1 participant and as making it more difficult to meet a partner by another. Not accepting the new life with a stoma and isolation also were described by 4 of the participants.

Limitations to physical and social activities. Participants described being limited in daily activities due to reduced strength and that some activities demanded more physical involvement. Participants also described not being able to travel like they did before, while others had refrained not only from travelling but also from swimming, sunbathing, and participating in nature and sport activities. Activities also required more planning than before.

Negative impact on physical and mental health. Six (6) participants described lack of physical health, 1 person described pain, and another that his/her sex life was “not working.” Participants also described feeling blue, worried, and depressed; 4 said their worry had to do with whether the cancer would return. 

This study aimed to describe adjustment to life with an ostomy 1 year after surgery and QOL and obstacles to QOL. The main findings of this study include that the overall median score on the OAS was 162 (75% of the maximum score) with no differences between men and women or among the different reasons for surgery. Persons with an ileostomy due to cancer had the lowest OAS score. Patients with an ileostomy had lower adjustment than patients with a colostomy. QOL was lower for patients in the 25th percentile of the total OAS score (>65 years, having undergone emergency surgery), where a higher percentage of patients with an ileostomy in that group was noted.

 The lowest adjustment scores for specific items concerned 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; 90% could manage the ostomy by themselves.

A descriptive questionnaire study²³ that included 147 patients from 2 settings (49% women, mean age of 65 years, 74% response rate) reported a mean OAS score of 159.5 (78% of maximum score) was lowered by distress over affording and obtaining ostomy supplies. These results were not reflected in the present study but can be explained by no or limited costs for ostomy supplies in Sweden. The OAS score was similar to the present study scores, but patients had their ostomy for a median of 10 years compared to 1 year in the present study where further adjustment could be anticipated. A recently published cross-sectional study¹⁷ among 158 patients (44% women, mean age 64 years), recruited from the customer registers of 8 surgical suppliers and pharmacies across Norway, was conducted to determine whether adjustment to an ostomy can predict HRQOL and/or overall QOL. The average OAS score was 150.2 (73.6% of the maximum score); 70% had their ostomies >1 year.²⁴ The OAS also has been used in 2 longitudinal questionnaire studies on patients with an ileanal pouch (IPAA)²⁴ and on patients with a continent ileostomy because of IBD²⁵ where patients scored a median of 6 (highest score) on 28 out of 36 items. Compared with the present study, patients with IBD and an ileostomy (40 patients) scored a median of 6 on only 9 of the 36 items. The median total OAS score was 181 among persons with IPAA,²⁴ 171 among persons with a continent ileostomy,²⁵ and 162 among persons with an ileostomy in the present study. Patients in the previous studies had a follow-up time of 15 years (IPAA) and a median age of 51 compared to 31 years (continent ileostomy) and a median age of 60 years and 1-year follow-up and a median age of 55 for patients with IBD and an ileostomy in the present study. 

Among patients in the present study, 90% were able to manage their ostomy by themselves. This compares favorably with the study by Person et al¹⁰ where only 15% could manage their ostomies. The regular and standardized follow-up (ie, 4 to 5 times during the first year and when needed) by an ET (including counselling and education) at an outpatient clinic resulted in patients feeling confident about managing their ostomy and well-informed and secure about telling the ET and the surgeon about changes in ostomy function when needed. This was reflected in the highest OAS scores for those items. Persons who had preoperative counselling by an ET also scored 13 points higher on the OAS total. Similar results were shown in the descriptive questionnaire study (N = 147) by Haugen et al,²³ where the more helpful the patients found the preoperative education provided by the wound, ostomy, and continence nurse, the better their adjustment, as indicated by a higher OAS score. Weekly group interactions during a 6-week period also were shown to be beneficial to patients in a quasi-experimental, single-center Turkish study²⁶ in terms of social adaptation compared to controls (n = 23, median age 55.5 years, 52% men vs. n = 27, median age 54 years, 67% men). Patients also reported having learned to solve problems encountered in ostomy care and daily life. In a descriptive questionnaire study²⁷ from China conducted 4 months postoperatively (54 patients, age range 40–70 years, 47 men), a significant difference in psychosocial adjustment was found between persons who did and did not independently care for their own ostomy (P = .05). Persons with high levels of knowledge and independence had a high level of psychosocial adjustment. In a qualitative meta-synthesis from China⁵ that included 16 qualitative studies exploring the effect of personal awareness and behavioral choices on having a stoma, 3 themes were identified: altered self, restricted life, and overcoming restrictions. A recently published qualitative study²⁸ that included 12 participant interviews (age range 30–70 years) conducted at 3, 9, and 15 months following ostomy surgery showed that assisting people with an ostomy to develop competent stoma self-care skills will promote social adaptation and self-acceptance. All of these studies,^{5,17,23,26,27} including the present research, point to the importance of the patient learning self-care skills and incorporating the ostomy into everyday life and how the ET has an important role in educating and counselling from preoperative care to postsurgical follow-up. 

Of the 8 questions with the lowest OAS scores, 3 were related to sex and intimacy. Participants reported having more difficulty enjoying sex, were anxious that something embarrassing would occur during intimacy, and felt less sexually attractive. This was reflected in the qualitative analysis, where fear of leakage, shame about noise and odor, and not feeling fresh were expressed. According to a descriptive questionnaire study⁴ among 21 persons with an ileostomy (mean age 51 years, 12 women/9 men) for a median of 21 years due to IBD, the greatest concern was intimacy. According to the study by Manderson,¹ body image and sexuality play an important role in an individual’s ability to adjust to body change. Previous studies, including a descriptive study conducted in China,²⁷ have described the limited opportunities for conversation about sex and sexual life in health care for patients^3,27 and for partners.²⁹ The results of a focus-group²⁹ study including 9 spouses (mean age 62 [range 49–74 years], 6 women/3 men) with the aim to illuminate spouses’ perceptions of living with a partner who had undergone stoma surgery because of rectal cancer showed the importance of offering patients and their partners the opportunity to have structured counselling about sex and intimacy. Annon’s³⁰ 4-stage model (Permission, Limited Information, Specific Suggestions, and Intensive Therapy — PLISSIT) is used in sexual counselling and facilitates patient permission to discuss sexuality while the health professional listens carefully, provides specific suggestions, and is alert to opportunities to refer for more intensive counselling or therapy. The PLISSIT model has been tested in a Turkish case-control study for patients with ostomies.³¹ During the intervention, 8 individual home visits were made to the patients in the study group (mean age 44 years, 70% men) to evaluate and discuss the sexual problems they were experiencing and to suggest solutions according to the PLISSIT model. The mean scores for sexual satisfaction for these participants improved significantly compared to the control group (mean age 44 years, 67% men; P <.05). It is important for the ET to discuss sexual issues with the patient and when possible involve the partner in the conversation. The first consideration is to determine whether patients want to discuss sexual issues and to respect their wishes. People with ostomies who have difficulties conveying and communicating their feelings depend on support to express themselves. Thus, the ET can facilitate adaptation to the new situation. However, if the ET feels uncomfortable talking about sexual issues, more training in sexology and communication will be needed.

Two (2) other items that generated a low OAS score concerned limitations in activity; some participants felt insecure about participating in sports and physical activities or set limits on the number of activities in which they were involved. Such concerns also were evident in the open-ended question regarding obstacles to good QOL. The ostomy was seen as an obstacle to participating in physical activities such as swimming, exercise, and outdoor life, and greater planning was required when travelling and participating in social life. After surgery, patients can set limits for themselves and the ostomy itself may not always be the obstacle; rather, the issue may be a psychological one. Together with the ET, patients can set realistic goals and challenge themselves. Talking about patients’ desire to return to activities in which they participated before the operation is of great importance to provide the tools needed for them to take control of their own lives. Emotional support, conversation, and counselling in the new life situation proved to be the basis for motivation to want to adapt to the changed life with an ostomy.³ 

The content analysis did not yield any new items regarding obstacles to QOL, but it gave a little more depth to some items already reflected in the OAS questions. This indicates the continued relevance of the OAS, although it was developed more than 30 years ago. The category Limitation in physical and social activities was well-reflected in the OAS item “Participate in sports and physical activities,” where 1 of the 4 lowest OAS scores was noted. Other studies^24,25 that also used the OAS to analyze obstacles to QOL showed patients with continent ileostomies had elimination impediments associated with the inconvenience of using public restrooms and having to plan bowel evacuation in advance. For patients with an IPAA, food restrictions and influence of restroom access on social life were seen as obstacles. 

Adjusting to life with an ostomy takes time. Using the OAS provides an option for evaluating adaptation over time in conversation with the individual patient. Although no statistical differences were found in total OAS scores between groups, a 13-point difference was noted in scores of persons with a colostomy and ileostomy and versus persons who did and did not have preoperative counselling with an ET. 

The OAS scores of patients with an ileostomy versus a colostomy due to cancer were 27 points lower; this is of clinical relevance because an improvement to a patient’s score of, for example, 1 point on 13 items would reflect a better adjustment for the individual patient. In addition, using the information provided by the OAS may help clinicians provide patient-relevant information, support, and advice to help patients form realistic expectations about their lives with an ostomy and improve adaptation in areas where there are concerns. 

The OAS is a relevant instrument for clinical use if the ET chooses to work according to Roy’s^8,9 nursing goals. The OAS aims to measure the physical, psychological, and social changes that occur after an ostomy operation. These areas compare with Roy’s goal for nursing — that is, the promotion of adaptation in each of the 4 functional modes: physiological, self-concept, role function, and interdependence — thereby contributing to the person’s health and QOL. If the patient completes the questionnaire before each follow-up, the ET can assess items with lower adjustment and focus follow-up on those items, discussing these with the patient and developing a plan to increase adjustment to life with an ostomy.

Patients with an ileostomy due to cancer had the lowest adjustment scores in the present study. This is a new result and needs further research. In particular, older patients with an ileostomy who cannot manage their ostomies by themselves may have to depend more on health care professionals than those with a colostomy. Patients needing chemotherapy as an additional treatment for their cancer also are affected by more fecal output from the ileostomy, requiring that clinicians pay special attention to these patients as part of follow-up. 

It is difficult to compare OAS scores from the present study with previous research due to differences in areas such as population, type of ostomy, time with an ostomy, differences in follow-up by an ET, cultural differences, and cost-related differences in patient access to ostomy equipment. An additional 2 questions were added to the original instrument in the present study; this meant the authors used the percentage of maximum for comparison with other studies. The strength of this study is that it was prospective and that all patients had the same follow-up schedule with an ET for the period 1 year post surgery. It would have been interesting to see how adjustment is influenced by less regular follow-up than in the present study, because patients in some hospitals may only have 1 or 2 follow-up visits because of the shortage of ETs or how the stoma care clinics are organized. This means that patients are not evaluated concerning complications, adjustment, and QOL for longer intervals and have to make contact with the ET by themselves when problems occur.

This prospective, explorative study assessed adjustment to life with an ostomy and QOL 1 year after ostomy surgery in 150 Swedish patients. Adjustment measured with the OAS was 75% of the maximum score with no significant differences between men and women or between the different diagnoses/reasons for ostomy surgery. However, patients with an ileostomy had a lower adjustment (70% of maximum) score compared to patients with a colostomy (76% of maximum). Patients with an ileostomy due to cancer had the lowest adjustment scores (63% of maximum score) versus 75% of maximum score in patients with a colostomy due to cancer. The OAS scores for patients who had preoperative counselling by an ET versus persons who did not were 75% versus 69% of maximum score, respectively, underscoring the important role of preoperative counselling in long-term adjustment and QOL. The 3 OAS items with the lowest scores were related to sex and intimacy, which was reflected in the qualitative analysis in the category, Ostomy-related concerns and impact on life. Future explorative studies are needed, both in terms of individual and focus group interviews, to unveil how patients want information about sex and sensitive issues to be designed and presented and how they want the ET to best communicate and discuss these issues after ostomy surgery.

The researchers thank the patients who participated in this study. 

The study was conducted with grants from the Local Research and Development Board for Gothenburg and Södra Bohuslän, Sweden, No. VGFOUGSB-107201. 

Ms. Fingren is an enterostomal therapy nurse; Ms. Lindholm is a registered nurse; Ms. Petersén is an enterostomal therapy nurse; and Ms. Hallén is an enterostomal therapy nurse, Department of Surgery, Institute of Clinical Sciences, Sahlgrenska University Hospital/ Östra, Gothenburg, Sweden. Dr. Carlsson is an Associate Professor, Department of Surgery, Institute of Clinical Sciences, Sahlgrenska University Hospital/Östra; and a senior lecturer, Institute of Health and Care Sciences, Sahlgrenska Academy, and the Centre for Person-Centred Care (GPCC), University of Gothenburg, Sweden.

Please address correspondence to: Eva Carlsson, PhD, RN, ET, Department of Surgery/Colorectal Unit, Sahlgrenska University Hospital/Östra, Diagnosvägen 16  SE-416 85 Göteborg, Sweden; email: eva.k.carlsson@vgregion.se.