Individuals with a Permanent Ostomy: Quality of Life and Out-of-Pocket Financial Costs for Ostomy Management

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EXECUTIVE SUMMARY

Over 1 million people in the United States are living with an ostomy.

The dramatic, lifelong changes associated with ostomy management often result in significant out-of-pocket financial costs for self-care.

Out-of-pocket financial costs for ostomy care can negatively impact quality of life (QOL) for patients with ostomies.

The involvement of a wound, ostomy, and continence (WOC) nurse can influence the QOL for these individuals.

Nurse leaders can and should use information gleaned from investigations such as this to work with third-party payers to ensure equal access to expert WOC nurses and supplies, reimbursement for out-of-pocket financial expenses, and to lobby for such funding at the national level.

DESPITE ADVANCES IN medical treatment for inflammatory bowel disease, diverticular disease, and bowel and bladder cancer, thousands of osto- my surgeries are performed each year in the U.S. health care system (Cooke, 2009). Ostomy surgery is accomplished when diseased organs of elimination are removed and an ostomy, or stoma, is creat- ed. This results in dramatic changes in patterns of elimination and a need for lifelong use of prosthetic devices or supplies for ostomy management, resulting in out-of- pocket financial costs for self-care. The surgery is accompanied by a full range of physiological and psychological needs and necessi- tates adjusting to a new way of life. Some profess the psychologi- cal impact may be greater than the physical impact (Orsted, 2007).

Pre and postoperative teach- ing, stoma site marking, and psy- chological support for individuals who undergo elective ostomy sur- gery are widely supported by pro- fessional medical and nursing associations (American Society of Colon and Rectal Surgeons & Wound Ostomy and Continence Nurse Society Committee Mem- bers, 2007; American Urological Association & Wound Ostomy and Continence Nurse Society Com- mittee Members, 2009). It is gener- ally believed that involvement of a wound, ostomy, and continence (WOC) nurse influences quality of life (QOL) for these individuals but there is a paucity of informa- tion about the impact of out-of- pocket financial costs on QOL.

A descriptive study was con- ducted to investigate QOL for in- dividuals with a permanent osto- my and to investigate how out-of- pocket costs affected QOL. The results may be used to inform pol- icymakers and the public about QOL and...