Discussion:

Investigators in Minneapolis reviewed literature and survey instruments to determine the need to characterize factors that affect long-term adjustment to living with an ostomy. The scored Ostomy Adjustment Scale (OAS) was compared with previous research to determine agreement. Additional survey items were designed to determine the level of long-term adjustment including relationships with perioperative factors, which was not reported in the literature prior to this work. These surveys along with demographic questions were mailed to 200 adult ostomates who were able to respond, and had their ostomy for at least six months.

 

Factors specifically explored included those addressed by the OAS and the SPFOA. The OAS evaluated patient response and adjustment, defined as a subjective response to having an ostomy, to their ostomy after surgery with a focus on long-term adjustment. The SPFOA addressed three areas of interest, including biophysical needs, psychological needs, and socio-cultural needs. Biophysical needs included stoma placement, abdominal contour, pouch choice and leakage, length of time living with an ostomy, demographics (age, gender, visual acuity, dexterity), and type of surgeon creating the ostomy. Psychological needs included support factors, such as education, group involvement, and care givers. Socio-cultural needs included the types of changes that occurred in lifestyle, such as activity levels, independence, and access to ostomy supplies.

 

The results helped to reclassify factors in the following categories: ostomy pouch factors, helpfulness of the Wound and Ostomy Care (WOC) nurse, changes in activities, and “other” factors.  A high response rate for this mailed survey was 74% (147/200), which the authors suggest may be an indication of the interest by ostomy patients in helping to understand factors associated with positive adjustment to living with an ostomy. Demographics showed that half were women, nearly all were Caucasian, and most were married. The mean age was 65 years old and more than half had an ileostomy, while about a quarter had a colostomy, and 15% had a urostomy. The median time living with an ostomy was 10 years with a range of 1-60 years. About half had ostomies because of inflammatory bowel disease, less than half because of cancer, and 3% because of diverticular disease/incontinence. Nearly 80% noted that their ostomy had “cured” their disease that led to surgery.

 

In general the scores for the OAS indicated good adjustment to living with an ostomy. On items related to the ostomy pouch, less than 20% had occasional or frequent leakage with most suggesting that the abdominal contour played the primary role , followed by overfilling of the pouch as another factor. The ability to empty and change pouches independently was noted by a high percentage of respondents (98% and 89% respectively). A high rate of self-esteem was seen (80%) with 71% noting that their prognosis did not cause them a lot of distress. The most common negative factor was the effect on sexuality (78%). Little to no effect was seen on travel (85%), work (86%), exercise (78%), and the ability to engage in social activities (81%).

 

Items related to the WOC nurse showed that scores were significantly higher when ostomy patients found the education and care by the WOC nurse helpful. Items were consistently scored high for the effect of helpfulness prior to surgery (84%), in the hospital setting (89%), at discharge (94%), and ongoing problem solving (92%). Interestingly, scores were also higher in patients with continued illness, which the authors suggested may indicate that the ostomy meant longer survival and relief from symptoms associated with ongoing disease. Distress about the cost and other access factors for ostomy supplies negatively affected scores.

 

Using multiple regression analysis, the only factor that stood out as a negative impact on long-term adjustment was access to and cost of ostomy supplies, lowering scores by 16 points. Factors that were most closely associated with positive adjustment scores were preoperative education by a WOC nurse, creation of the ostomy by a colon/rectal or urology surgeon, and the presence of ongoing illness.

 

The authors noted that their results were consistent with other studies that showed patients could adjust to living with an ostomy and that the factor most associated with lower scores is related to distress about access to ostomy supplies and sexuality. The results of this study emphasized the role of WOC nurses for preoperative, postoperative, and ongoing education and problem-solving support. Patients with more independence in caring for their ostomy were more likely to have higher adjustment scores.

 

Limitations of this study include the homogeneity of the sample, which may not be generalized to more geographically, ethnically, and age diverse populations. The authors suggest that the education and support by WOC nurses is an important feature for positive adjustment. Teaching and care approaches should be looked at to determine best practices. Advocacy to improve access to ostomy supplies may be another important feature to improve adjustment and may be a role in ostomy care and support for the WOC nurse.