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Published in:

01-03-2013

Development of a Chronic Care Ostomy Self-Management Program

Authors: Marcia Grant, Ruth McCorkle, Mark C. Hornbrook, Christopher S. Wendel, Robert Krouse

Published in: Journal of Cancer Education | Issue 1/2013

Abstract

Each year a percentage of the 1.2 million men and women in the United States with a new diagnosis of colorectal cancer join the 700,000 people who have an ostomy. Education targeting the long-term, chronic care of this population is lacking. This report describes the development of a Chronic Care Ostomy Self-Management Program, which was informed by (1) evidence on published quality-of-life changes for cancer patients with ostomies, (2) educational suggestions from patients with ostomies, and (3) examination of the usual care of new ostomates to illustrate areas for continued educational emphases and areas for needed education and support. Using these materials, the Chronic Care Ostomy Self-Management Program was developed by a team of multi-disciplinary researchers accompanied by experienced ostomy nurses. Testing of the program is in process. Pilot study participants reported high satisfaction with the program syllabus, ostomy nurse leaders, and ostomate peer buddies.

Altschuler A, Ramirez M, Grant M, Wendel C, Hornbrook MC, Herrinton L, Krouse RS (2009) The influence of husbands' or male partners' support on women's psychosocial adjustment to having an ostomy resulting from colorectal cancer. J Wound Ostomy Continence Nurs 36(3):299–305. doi:10.1097/WON.0b013e3181a1a1dc PubMedCrossRef

American Cancer Society (2012) Cancer facts and figures 2012. American Cancer Society, Atlanta

Baldwin CM, Grant M, Wendel C, Hornbrook MC, Herrinton LJ, McMullen C, Krouse RS (2009) Gender differences in sleep disruption and fatigue on quality of life among persons with ostomies. J Clin Sleep Med 5(4):335–343PubMed

Baldwin CM, Grant M, Wendel C, Rawl S, Schmidt CM, Ko C, Krouse RS (2008) Influence of intestinal stoma on spiritual quality of life of U.S. veterans. J Holist Nurs 26(3):185–194. doi:10.1177/0898010108315185, discussion 195–186; quiz 197–189PubMedCrossRef

Bandura A (1977) Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev 84:119–215CrossRef

Barrie B (1997) Second act: Life after colostomy and other adventures. Scribner, New York

Coons SJ, Chongpison Y, Wendel CS, Grant M, Krouse RS (2007) Overall quality of life and difficulty paying for ostomy supplies in the Veterans Affairs ostomy health-related quality of life study: an exploratory analysis. Med Care 45(9):891–895PubMedCrossRef

de Gouveia Santos VLC, Chaves EC, Kimura M (2006) Quality of life and coping of persons with temporary and permanent stomas. J Wound Ostomy Continence Nurs 33(5):503–509PubMedCrossRef

Gemmill R, Sun V, Ferrell B, Krouse RS, Grant M (2010) Going with the flow: quality-of-life outcomes of cancer survivors with urinary diversion. J Wound Ostomy Continence Nurs 37(1):65–72. doi:10.1097/WON.0b013e3181c68e8f PubMedCrossRef

10.

Grant M (1999) Quality of life issues in colorectal cancer. Dev Support Cancer Care 3(1):4–9

11.

Grant M, Ferrell B, Dean G, Uman G, Chu D, Krouse R (2004) Revision and psychometric testing of the City of Hope Quality of Life-Ostomy Questionnaire. Qual Life Res 13(8):1445–1457PubMedCrossRef

12.

Grant M, McMullen CK, Altschuler A, Hornbrook MC, Herrinton LJ, Wendel CS, Baldwin CM, Krouse RS (2012) Irrigation practices in long-term survivors of colorectal cancer (CRC) with colostomies. Clin J Oncol Nurs 16(5):514-519

13.

Grant M, McMullen CK, Altschuler A, Mohler MJ, Hornbrook MC, Herrinton LJ, Wendel CS, Baldwin CM, Krouse RS (2011) Gender differences in quality of life among long-term colorectal cancer survivors with ostomies. Oncol Nurs Forum 38(5):587–596. doi:10.1188/11.ONF.587-596 PubMedCrossRef

14.

Grant M, Krouse R, McMullen C, Hornbrook M, Baldwin CM, Herrinton L, Ramirez M, Altschuler A, Mohler MJ (2007) Dietary adjustments reported by colorectal cancer (CRC) survivors with permanent ostomies. J Cancer Educ Suppl 22(4):33

15.

Hibbard JH, Mahoney ER, Stockard J, Tusler M (2005) Development and testing of a short form of the patient activation measure. Health Serv Res 40(6 Pt 1):1918–1930. doi:10.1111/j.1475-6773.2005.00438.x PubMedCrossRef

16.

Hibbard JH, Stockard J, Mahoney ER, Tusler M (2004) Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res 39(4 Pt 1):1005–1026. doi:10.1111/j.1475-6773.2004.00269.x PubMedCrossRef

17.

Hornbrook MC, Wendel CS, Coons SJ, Grant M, Herrinton LJ, Mohler MJ, Baldwin CM et al (2011) Complications among colorectal cancer survivors: SF-6D preference-weighted quality of life scores. Med Care 49(3):321–326. doi:10.1097/MLR.0b013e31820194c8 PubMedCrossRef

18.

Horner DJ, Wendel CS, Skeps R, Rawl SM, Grant M, Schmidt CM, Ko CY, Krouse RS (2010) Positive correlation of employment and psychological well-being for veterans with major abdominal surgery. Am J Surg 200(5):585–590. doi:10.1016/j.amjsurg.2010.07.006 PubMedCrossRef

19.

Hsieh H-F, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Heal Res 15(9):1277–1288. doi:10.1177/1049732305276687 CrossRef

20.

Jain S, McGory ML, Ko CY, Sverdlik A, Tomlinson JS, Wendel CS, Coons SJ et al (2007) Comorbidities play a larger role in predicting health-related quality of life compared to having an ostomy. Am J Surg 194(6):774–779. doi:10.1016/j.amjsurg.2007.08.020, discussion 779PubMedCrossRef

21.

Krouse R, Grant M, Ferrell B, Dean G, Nelson R, Chu D (2007) Quality of life outcomes in 599 cancer and non-cancer patients with colostomies. J Surg Res 138(1):79–87PubMedCrossRef

22.

Krouse RS, Grant M, Rawl SM, Mohler MJ, Baldwin CM, Coons SJ, McCorkle R, Schmidt CM, Ko CY (2009) Coping and acceptance: the greatest challenge for veterans with intestinal stomas. J Psychosom Res 66(3):227–233. doi:10.1016/j.jpsychores.2008.09.009 PubMedCrossRef

23.

Krouse RS, Grant M, Wendel CS, Mohler MJ, Rawl SM, Baldwin CM, Coons SJ, McCorkle R, Ko CY, Schmidt CM (2007) A mixed-methods evaluation of health-related quality of life for male veterans with and without intestinal stomas. Dis Colon Rectum 50(12):2054–2066. doi:10.1007/s10350-007-9004-7 PubMedCrossRef

24.

Krouse RS, Herrinton LJ, Grant M, Wendel CS, Green SB, Mohler MJ, Baldwin CM et al (2009) Health-related quality of life among long-term rectal cancer survivors with an ostomy: manifestations by sex. J Clin Oncol 27(28):4664–4670. doi:10.1200/JCO.2008.20.9502 PubMedCrossRef

25.

Krouse RS, Mohler MJ, Wendel CS, Grant M, Baldwin CM, Rawl SM, McCorkle R et al (2006) The VA ostomy health-related quality of life study: objectives, methods, and patient sample. Curr Med Res Opin 22(4):781–791. doi:10.1185/030079906X96380 PubMedCrossRef

26.

Liu L, Herrinton LJ, Hornbrook MC, Wendel CS, Grant M, Krouse RS (2010) Early and late complications among long-term colorectal cancer survivors with ostomy or anastomosis. Dis Colon Rectum 53(2):200–212. doi:10.1007/DCR.0b013e3181bdc408 PubMedCrossRef

27.

Lorig K, Holman H (1998) Arthritis self-efficacy scales measure self-efficacy. Arthritis Care Res Off J Arthritis Health Prof Assoc 11(3):155–157CrossRef

28.

Lorig K, Laurin J, Holman HR (1984) Arthritis self-management: a study of the effectiveness of patient education for the elderly. Gerontologist 24(5):455–457PubMedCrossRef

29.

Lorig K, Mazonson PD, Holman HR (1993) Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. Arthritis Rheum 36(4):439–446PubMedCrossRef

30.

Lorig KR, Sobel DS, Stewart AL et al (1999) Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Med Care 37(1):5–14PubMedCrossRef

31.

Lundy JJ, Coons SJ, Wendel C, Hornbrook MC, Herrinton L, Grant M, Krouse RS (2009) Exploring household income as a predictor of psychological well-being among long-term colorectal cancer survivors. Qual Life Res 18(2):157–161. doi:10.1007/s11136-008-9432-4 PubMedCrossRef

32.

Manderson L (2005) Boundary breaches: the body, sex and sexuality after stoma surgery. Soc Sci Med 61(2):405–415PubMedCrossRef

33.

McMullen CK, Hornbrook MC, Grant M, Baldwin CM, Wendel CS, Mohler MJ, Altschuler A, Ramirez M, Krouse RS (2008) The greatest challenges reported by long-term colorectal cancer survivors with stomas. J Support Oncol 6(4):175–182PubMed

34.

McMullen CK, Mark C, Hornbrook LJ, Herrinton AA, Grant M, Wendel C, Coons SJ et al (2010) Improving survivorship care for long-term colorectal cancer survivors: key findings of a 5-year study. Clin Med Res 8(1):32–33

35.

Mitchell KA, Rawl SM, Max Schmidt C, Grant M, Ko CY, Baldwin CM, Wendel C, Krouse RS (2007) Demographic, clinical, and quality of life variables related to embarrassment in veterans living with an intestinal stoma. J Wound Ostomy Continence Nurs 34(5):524–532, September/OctoberPubMedCrossRef

36.

Mohler MJ, Coons SJ, Hornbrook MC, Herrinton LJ, Wendel CS, Grant M, Krouse RS (2008) The health-related quality of life in long-term colorectal cancer survivors study: objectives, methods and patient sample. Curr Med Res Opin 24(7):2059–2070. doi:10.1185/03007990802118360 PubMedCrossRef

37.

Mowdy S (1998) The role of the WOC nurse in an Ostomy Support Group. J Wound Ostomy Cont Nurs 25(1):51–54

38.

Pittman J, Rawl SM, Schmidt CM, Grant M, Ko CY, Wendel C, Krouse RS (2008) Demographic and clinical factors related to ostomy complications and quality of life in veterans with an ostomy. J Wound Ostomy Cont Nurs 35(5):493–503. doi:10.1097/01.WON.0000335961.68113.cb CrossRef

39.

Piwonka MA, Merino JM (1999) A multidimensional modeling of predictors influencing the adjustment to a colostomy. J Wound Ostomy Cont Nurs 26(6):298–305

40.

Popek S, Grant M, Gemmill R, Wendel CS, Mohler MJ, Rawl SM, Baldwin CM, Ko CY, Schmidt CM, Krouse RS (2010) Overcoming challenges: life with an ostomy. Am J Surg 200(5):640–645. doi:10.1016/j.amjsurg.2010.07.009 PubMedCrossRef

41.

Ramirez M, McMullen C, Grant M, Altschuler A, Hornbrook MC, Krouse RS (2009) Figuring out sex in a reconfigured body: experiences of female colorectal cancer survivors with ostomies. Women Health 49(8):608–624. doi:10.1080/03630240903496093 PubMed

42.

Sun V, Grant M, McMullen CK, Altschuler A, Mohler MJ, Hornbrook MC, Herrinton LJ, Baldwin CM, Krouse RS (2012) Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations. J Wound Ostomy Cont Nurs (in press)

43.

Symms MR, Rawl SM, Grant M, Wendel CS, Coons SJ, Hickey S, Baldwin CM, Krouse RS (2008) Sexual health and quality of life among male veterans with intestinal ostomies. Clin Nurse Spec 22(1):30–40. doi:10.1097/01.NUR.0000304181.36568.a7 PubMedCrossRef

44.

United Ostomy Associations of America (2012) New Patient Guide Colostomy http://www.ostomy.org/ostomy_info/pubs/UOAA_NPG_Colostomy_2012.pdf. Accessed 8/10/12

45.

United Ostomy Associations of America, Inc. Ostomy information and care guides. http://www.ostomy.org/ostomy_info/. Accessed April 22, 2012.

46.

United Ostomy Associations of America, Inc. UOAA Affiliated Support Groups. http://www.ostomy.org/supportgroups1.shtml. Accessed April 22, 2012.

47.

Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A (2001) Improving chronic illness care: translating evidence into action. Health Aff 20(6):64–78. doi:10.1377/hlthaff.20.6.64 CrossRef

48.

Wagner EH, Bennett SM, Austin BT, Greene SM, Schaefer JK, Vonkorff M (2005) Finding common ground: patient-centeredness and evidence-based chronic illness care. J Altern Complement Med 11(Suppl 1):S7–S15PubMed

49.

Wells RJ (1991) Sexuality: an unknown word for patients with a stoma? Recent results in cancer research. Fortschritte der Krebsforschung. Progres dans les recherches sur le cancer 121:115–120

50.

Wound Ostomy and Continence Nurses Society. Wound Ostomy and Continence Nurses Society—Welcome. http://www.wocn.org. Accessed April 22, 2012

51.

Yanez-Cadena D, Sarria-Santamera A, Garcia-Lizana F (2006) Can we improve management and control of chronic diseases? Aten Primaria 37(4):221–230PubMedCrossRef

Title: Development of a Chronic Care Ostomy Self-Management Program
Authors: Marcia Grant
Ruth McCorkle
Mark C. Hornbrook
Christopher S. Wendel
Robert Krouse
Publication date: 01-03-2013
Publisher: Springer-Verlag
Published in: Journal of Cancer Education / Issue 1/2013
Print ISSN: 0885-8195
Electronic ISSN: 1543-0154
DOI: https://doi.org/10.1007/s13187-012-0433-1

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