A new model of patient-reported outcome monitoring with a clinical feedback system in ostomy care: rationale, description and evaluation protocol

Kirsten Lerum Indrebø, Anny Aasprang, Torill Elin Olsen, John Roger Andersen, Kirsten Lerum Indrebø, Anny Aasprang, Torill Elin Olsen, John Roger Andersen

Abstract

Background: Living with an ostomy can be challenging and adapting to life with an ostomy can be particularly complex, with regard to both the physical and psychosocial aspects. Follow-up with a stoma care nurse (SCN) is usually performed after surgery to support the adaptation process. In the present paper, we describe a new model of ostomy care, where a clinical feedback system (CFS) is implemented in order to improve the adaption process of patients with an ostomy. We also present a plan for evaluating patients experience with the CFS and their clinical outcomes.

Methods: In this study, we include patients who had recently performed colostomy, ileostomy, or urostomy surgery. The intervention includes self-reported measures for adaptation to life with an ostomy and health-related quality of life (HRQoL), as well as patient experiences and satisfaction recorded by the clinical feedback system. The measures are electronically assessed before each clinical consultation at 3, 6, and 12 months after surgery. The scores are instantly analysed and graphically presented for use during the consultation and the patient and the SCN can discuss the findings. Patient experiences and satisfaction with care will be measured with the Generic Short Patient Experiences Questionnaire. Adaptation to the life with ostomy will be measured with the Ostomy Adjustment Scale, and HRQoL with the Short Form 36.

Discussion: This study presents a novel approach that could lead to improved consultation, more patient involvement, and better adaptation to life with an ostomy.

Trial register: ClinicalTrials.gov Registration Number: NCT03841071. Date 18. February 2019 retrospectively registered.

Keywords: Adaptation; Adjustment; Clinical feedback system; Ostomy; Routine outcome measure.

Conflict of interest statement

The authors declare that they have no competing interests.

References

    1. Kiliç E, Taycan O, Bellı AK. The effect of permanent Ostomy on body image, self-esteem, marital adjustment, and sexual functioning. Turk J Psychiatry. 2007;18(4):1-8.
    1. Olbrisch ME, Jansen MA. Development and validation of the Ostomy adjustment scale. Rehabil Psychol. 1983;28:3–12. doi: 10.1037/h0090996.
    1. Cramer JA, Spilker B. Quality of life and pharmacoeconomics: an introduction. Philadelphia: Lippincott Williams & Wilkins, Lippincott-Raven Publishers; 1998.
    1. Lopes A, Decesaro M. The Adjustments Experienced by Persons With an Ostomy: An Integrative Review of the Literature. King of Prussia: HMP Communications. 2014;60:34.
    1. Villa G, Manara DF, Brancato T, Rocco G, Stievano A, Vellone E, Alvaro R. Life with a urostomy: a phenomenological study. Appl Nurs Res. 2018;39:46–52. doi: 10.1016/j.apnr.2017.10.005.
    1. Haughey S, McGroggan G. Living well with a stoma: a descriptive evaluation. Gastrointest Nurs. 2017;15:41–48. doi: 10.12968/gasn.2017.15.7.41.
    1. Lim SH, Chan SWC, He H-G. Patients’ experiences of performing self-care of stomas in the initial postoperative period. Cancer Nurs. 2015;38:185–193. doi: 10.1097/NCC.0000000000000158.
    1. Claessens I, Probert R, Tielemans C, Steen A, Nilsson C, Andersen BD, Størling ZM. The Ostomy life study: the everyday challenges faced by people living with a stoma in a snapshot. Gastrointest Nurs. 2015;13:18–25. doi: 10.12968/gasn.2015.13.5.18.
    1. Indrebø LK, Andersen RJ, Natvig KG. The Ostomy adjustment scale: translation into Norwegian language with validation and reliability testing. J Wound Ostomy Continence Nurs. 2014;41:357–364. doi: 10.1097/WON.0000000000000041.
    1. Fingren J, Lindholm E, Petersen C, Hallen A-M, EJOwm C. A Prospective, Explorative Study to Assess Adjustment 1 Year After Ostomy Surgery Among Swedish Patients. 2018;64:12.
    1. Vonk-Klaassen SM, de Vocht HM, den Ouden MEM, Eddes EH, Schuurmans MJ. Ostomy-related problems and their impact on quality of life of colorectal cancer ostomates: a systematic review. Qual Life Res. 2016;25:125–133. doi: 10.1007/s11136-015-1050-3.
    1. Brown H, Randle J. Living with a stoma: a review of the literature. J Clin Nurs. 2005;14:74–81. doi: 10.1111/j.1365-2702.2004.00945.x.
    1. Indrebø KL, Natvig GK, Andersen JR. A cross-sectional study to determine whether adjustment to an Ostomy can predict health-related and/or overall quality of life. Ostomy Wound Manage. 2016;62:50.
    1. Furukawa C, Sasaki Y, Matsui K, Morioka I. Health-related quality of life and its relevant factors in Japanese patients with a urostomy. J Wound Ostomy Continence Nurs. 2013;40:165–170. doi: 10.1097/WON.0b013e31827e8339.
    1. Nichols RT. Quality of life in US residents with Ostomies as assessed using the SF36v2. J Wound Ostomy Continence Nurs. 2015;42:71–78. doi: 10.1097/WON.0000000000000093.
    1. Näsvall P, Dahlstrand U, Löwenmark T, Rutegård J, Gunnarsson U, Strigård K. Quality of life in patients with a permanent stoma after rectal cancer surgery. Qual Life Res. 2017;26:55–64. doi: 10.1007/s11136-016-1367-6.
    1. Boraii S. A descriptive study to assess quality of life in Egyptian patients with a stoma. Ostomy Wound Manage. 2017;63:28–33.
    1. Cerruto MA, D’Elia C, Cacciamani G, De Marchi D, Siracusano S, Iafrate M, Niero M, Lonardi C, Bassi P, Belgrano E. Behavioural profile and human adaptation of survivors after radical cystectomy and ileal conduit. Health Qual Life Outcomes. 2014;12:46. doi: 10.1186/1477-7525-12-46.
    1. Recalla S, English K, Nazarali R, Mayo S, Miller D, Gray M. Ostomy care and management: a systematic review. J Wound Ostomy Continence Nurs. 2013;40:489–500. doi: 10.1097/WON.0b013e3182a219a1.
    1. Merandy K. Factors related to adaptation to cystectomy with urinary diversion: an integrative review. J Wound Ostomy Continence Nurs. 2016;43:499–508. doi: 10.1097/WON.0000000000000269.
    1. Lopes A, Decesaro M. Adjustments experience by persons with an ostomy: a integrative review of the literature. Ostomy Wound Manage [Internet]. 2014;60(10):34–42.
    1. Faury S, Koleck M, Foucaud J, M’bailara K, Quintard B. Patient education interventions for colorectal cancer patients with stoma: a systematic review. Patient Educ Couns. 2017;100:1807–1819. doi: 10.1016/j.pec.2017.05.034.
    1. Johnson T. Follow-up care of stoma patients: a systematic literature review. Gastrointest Nurs. 2012;10:30–36. doi: 10.12968/gasn.2012.10.9.30.
    1. Beaver K, Latif S, Williamson S, Procter D, Sheridan J, Heath J, Susnerwala S, Luker K. An exploratory study of the follow-up care needs of patients treated for colorectal cancer. J Clin Nurs. 2010;19:3291–3300. doi: 10.1111/j.1365-2702.2010.03407.x.
    1. Millan M, Tegido M, Biondo S, García-Granero E. Preoperative stoma siting and education by stomatherapists of colorectal cancer patients: a descriptive study in twelve Spanish colorectal surgical units. Color Dis. 2010;12:e88–e92.
    1. Zhang YJ-E, Wong YFK, You YL-M, Zheng YM-C, Li YQ, Zhang YB-Y, Huang YM-R, Ye YX-M, Liang YM-J, Liu YJ-L. Effects of Enterostomal nurse telephone follow-up on postoperative adjustment of discharged colostomy patients. Cancer Nurs. 2013;36:419–428. doi: 10.1097/NCC.0b013e31826fc8eb.
    1. Riemer M, Rosof-Williams J, Bickman L. Theories related to changing clinician practice. Child and Adolescent Psychiatric Clinics. 2005;14:241–254. doi: 10.1016/j.chc.2004.05.002.
    1. Kd J. A chance for change: building an outcome monitoring feedback system for outpatient mental health care. Leiden: Clinical, Health and Neuropsychology, Faculty of Social and Behavioural Sciences, Leiden University; 2012.
    1. Bickman L, Kelley SD, Breda C, de Andrade AR, Riemer M. Effects of routine feedback to clinicians on mental health outcomes of youths: results of a randomized trial. Psychiatr Serv. 2011;62:1423–1429. doi: 10.1176/appi.ps.002052011.
    1. Lambert Michael J. Prevention of treatment failure: The use of measuring, monitoring, and feedback in clinical practice. Washington: American Psychological Association; 2010.
    1. Carlier IVE, Meuldijk D, Van Vliet IM, Van Fenema E, Van Der Wee NJA, Zitman FG. Routine outcome monitoring and feedback on physical or mental health status: evidence and theory. J Eval Clin Pract. 2012;18:104–110. doi: 10.1111/j.1365-2753.2010.01543.x.
    1. de Beurs E, Den Hollander-Gijsman M, van Rood Y, van Der Wee N, Giltay E, van Noorden M, van Der Lem R, van Fenema E, Zitman F. Routine outcome monitoring in the Netherlands: practical experiences with a web-based strategy for the assessment of treatment outcome in clinical practice. Clin Psychol Psychother. 2011;18:1–12. doi: 10.1002/cpp.696.
    1. SLOAN J, CELLA D, HAYS R. Clinical significance of patient-reported questionnaire data: another step toward consensus. Journal of Clinical Epidemiology. 2005;58(12):1217–1219. doi: 10.1016/j.jclinepi.2005.07.009.
    1. Zulkowski K, Ayello E, Stelton S. WCET international Ostomy Guideline. Perth: WECT; 2014.
    1. Society Clinical Guideline WOCN. Management of the Adult Patient With a Fecal or Urinary Ostomy-An Executive Summary. J Wound Ostomy Continence Nurs. 2018;45:50. doi: 10.1097/WON.0000000000000396.
    1. WCET International Ostomy Guideline.
    1. Sjetne IS, Bjertnaes OA, Olsen RV, Iversen HH, GJBhsr B. The Generic Short Patient Experiences Questionnaire (GS-PEQ): identification of core items from a survey in Norway. 2011. p. 88.
    1. Burckhardt CS, Eisenberg MG. The Ostomy adjustment scale: further evidence of reliability and validity. Rehabil Psychol. 1990;35:149–155. doi: 10.1037/h0079056.
    1. Brydolf M, Berndtsson I, Lindholm E, Berglund B. Evaluation of a Swedish version of the Ostomy adjustment scale. Scand J Caring Sci. 1994;8:179–183. doi: 10.1111/j.1471-6712.1994.tb00019.x.
    1. Ware JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. Conceptual Framework and Item Selection. Med Care. 1992;30:473–483. doi: 10.1097/00005650-199206000-00002.
    1. Hays RD, Morales LS. The RAND-36 measure of health-related quality of life. Ann Med. 2001;33:350–357. doi: 10.3109/07853890109002089.
    1. Ware J, Kosinski M, Gandek B. SF-36 health survey: manual and interpretation guide Lincoln. RI: QualityMetric Incorporated; 2000.
    1. J-e Z, Wong FKY, Zheng M-c, Hu A-l, H-q Z. Psychometric evaluation of the ostomy adjustment scale in Chinese cancer patients with colostomies. Cancer Nurs. 2015;38:395–405. doi: 10.1097/NCC.0000000000000213.
    1. Aaronson NK, Muller M, Cohen PD, Essink-Bot M-L, Fekkes M, Sanderman R, Sprangers MA, Te Velde A, Verrips E. Translation, validation, and norming of the Dutch language version of the SF-36 health survey in community and chronic disease populations. J Clin Epidemiol. 1998;51:1055–1068. doi: 10.1016/S0895-4356(98)00097-3.
    1. Loge JH, Kaasa S, Hjermstad MJ, Kvien TK. Translation and performance of the Norwegian SF-36 health survey in patients with rheumatoid arthritis. I. Data quality, scaling assumptions, reliability, and construct validity. J Clin Epidemiol. 1998;51:1069–1076. doi: 10.1016/S0895-4356(98)00098-5.

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