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 patients3,27 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 studies24,25 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’s8,9 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.