Behavioural profile and human adaptation of survivors after radical cystectomy and ileal conduit

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Abstract

Background

There is a lack of good data in the literature evaluating the Health-Related Quality of Life (HR- QoL) in patients with urinary diversions. The aim of this study was to examine the changes in expectation and needs in terms of human adaptation and behavioural profiles in patients with ileal conduit (IC) after radical cystectomy (RC) for bladder cancer (BC).

Materials and methods

A qualitative, multicenter cross-sectional study using a “narrative based” approach was planned. We proceed with a sampling reasoned choice ( purposive), selecting groups of patients with follow-up from one up to more than 7 years after surgery. Data were collected through individual interviews.

Results

Thirty patients participated in the study. The processing of the interviews allowed us to identify 2 major profiles: positive and negative. Patients with a positive profile resumed normal daily activities with no or limited restrictions both on the personal and the social level. This profile reflects a good HR-QoL. The negative profile reflects the patients for whom the ostomy has meant a worsening of HR-QoL. A positive profile was statistically more frequent in older patients (p = 0.023), with a longer follow-up (p = 0.042) and less complications rates (p = 0.0002). According to the length of follow-up and the occurrence of complitations, we identified further 5 intermediate profiles.

Conclusions

Patients’ satisfaction is related to the degree of adaptation to their new life with an urinary stoma and its correct management. Live “with urinary diversion” represents a new phase of life and not a deterioration.

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Most cited references 7

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Integrating response shift into health-related quality of life research: a theoretical model.

M A G Sprangers, C E Schwartz (1999)

Patients confronted with a life-threatening or chronic disease are faced with the necessity to accommodate to their illness. An important mediator of this adaptation process is 'response shift' which involves changing internal standards, values and the conceptualization of quality of life (QOL). Integrating response shift into QOL research would allow a better understanding of how QOL is affected by changes in health status and would direct the development of reliable and valid measures for assessing changes in QOL. A theoretical model is proposed to clarify and predict changes in QOL as a result of the interaction of: (a) a catalyst, referring to changes in the respondent's health status; (b) antecedents, pertaining to stable or dispositional characteristics of the individual (e.g. personality); (c) mechanisms, encompassing behavioral, cognitive, or affective processes to accommodate the changes in health status (e.g. initiating social comparisons, reordering goals); and (d) response shift, defined as changes in the meaning of one's self-evaluation of QOL resulting from changes in internal standards, values, or conceptualization. A dynamic feedback loop aimed at maintaining or improving the perception of QOL is also postulated. This model is illustrated and the underlying assumptions are discussed. Future research directions are outlined that may further the investigation of response shift, by testing specific hypotheses and predictions about the QOL domains and the clinical and psychosocial conditions that would potentiate or prevent response shift effects.

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ICUD-EAU International Consultation on Bladder Cancer 2012: Urinary diversion.

Richard Hautmann, Hassan Abol-enein, Thomas Davidsson … (2013)

A summary of the 2nd International Consultation on Bladder Cancer recommendations on the reconstructive options after radical cystectomy (RC), their outcomes, and their complications. To review the literature regarding indications, surgical details, postoperative care, complications, functional outcomes, as well as quality-of-life measures of patients with different forms of urinary diversion (UD). An English-language literature review of data published between 1970 and 2012 on patients with UD following RC for bladder cancer was undertaken. No randomized controlled studies comparing conduit diversion with neobladder or continent cutaneous diversion have been performed. Consequently, almost all studies used in this report are of level 3 evidence. Therefore, the recommendations given here are grade C only, meaning expert opinion delivered without a formal analysis. Indications and patient selection criteria have significantly changed over the past 2 decades. Renal function impairment is primarily caused by obstruction. Complications such as stone formation, urine outflow, and obstruction at any level must be recognized early and treated. In patients with orthotopic bladder substitution, daytime and nocturnal continence is achieved in 85-90% and 60-80%, respectively. Continence is inferior in elderly patients with orthotopic reconstruction. Urinary retention remains significant in female patients, ranging from 7% to 50%. RC and subsequent UD have been assessed as the most difficult surgical procedure in urology. Significant disparity on how the surgical complications were reported makes it impossible to compare postoperative morbidity results. Complications rates overall following RC and UD are significant, and when strict reporting criteria are incorporated, they are much higher than previously published. Fortunately, most complications are minor (Clavien grade 1 or 2). Complications can occur up to 20 yr after surgery, emphasizing the need for lifelong monitoring. Evidence suggests an association between surgical volume and outcome in RC; the challenge of optimum care for elderly patients with comorbidities is best mastered at high-volume hospitals by high-volume surgeons. Preoperative patient information, patient selection, surgical techniques, and careful postoperative follow-up are the cornerstones to achieve good long-term results. Copyright © 2012 European Association of Urology. All rights reserved.

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Muscle invasive bladder cancer: examining survivor burden and unmet needs.

Nihal Mohamed, Phapichaya Chaoprang Herrera, Shawna Hudson … (2013)

Although improvements in perioperative care have decreased surgical morbidity after radical cystectomy for muscle invasive bladder cancer, treatment side effects still have a negative impact on patient quality of life. We examined unmet patient needs along the illness trajectory. A total of 30 patients (26.7% women) treated with cystectomy and urinary diversion for muscle invasive bladder cancer participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network (BCAN) website between December 2011 and September 2012. Data were collected at individual interviews, which were audiotaped and transcribed. Transcribed data were quantitatively analyzed to explore key unmet needs. At diagnosis unmet informational needs were predominant, consisting of insufficient discussion of certain topics, including urinary diversion options and their side effects, self-care, the recovery process and medical insurance. Unmet psychological needs related to depression, and worries about changes in body image and sexual function were reported. Postoperative unmet needs revolved around medical needs (eg pain and bowel dysfunction) and instrumental needs (eg need of support for stomal appliances, catheters and incontinence). During survivorship (ie 6 to 72 months postoperatively) unmet needs centered around psychological support (ie depression, poor body image and sexual dysfunction) and instrumental support (eg difficulty adjusting to changes in daily living). Meeting patient needs is imperative to ensure adequate patient involvement in health care and enhance postoperative quality of life. An effective support provision plan should follow changes in patient needs. Copyright © 2014 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

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Author and article information

Contributors

Maria Angela Cerruto

Carolina D’Elia

Giovanni Cacciamani

Davide De Marchi

Salvatore Siracusano

Massimo Iafrate

Mauro Niero

Cristina Lonardi

Pierfrancesco Bassi

Emanuele Belgrano

Ciro Imbimbo

Marco Racioppi

Renato Talamini

Stefano Ciciliato

Laura Toffoli

Michele Rizzo

Francesco Visalli

Paolo Verze

Walter Artibani

Journal

Journal ID (nlm-ta): Health Qual Life Outcomes

Journal ID (iso-abbrev): Health Qual Life Outcomes

Title: Health and Quality of Life Outcomes

Publisher: BioMed Central

ISSN (Electronic): 1477-7525

Publication date Collection: 2014

Publication date (Electronic): 7 April 2014

Volume: 12

Page: 46

Affiliations

[1 ]Urology Clinic, University of Verona, P.zza L.A. Scuro 10, Verona 37134, Italy

[2 ]Urology Clinic, University of Trieste, Trieste, Italy

[3 ]Urology Clinic, University of Padua, Padua, Italy

[4 ]Department Time Space Image Society, Sociology section, University of Verona, Verona, Italy

[5 ]Urology Clinic, Catholic University of the Sacred Heart, Rome, Italy

[6 ]Department of Urology, University of Naples, Corso Umberto I, 40, Napoli 80138, Italy

[7 ]Unit of Epidemiology and Biostatistics, IRCCS-CRO Aviano, Aviano, Italy

Article

Publisher ID: 1477-7525-12-46

DOI: 10.1186/1477-7525-12-46

PMC ID: 3991923

PubMed ID: 24708662

SO-VID: 825d2c0b-ed63-42ff-bfd0-5b544705af96

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Behavioural profile and human adaptation of survivors after radical cystectomy and ileal conduit

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Abstract

Background

Materials and methods

Results

Conclusions

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Most cited references 7

Integrating response shift into health-related quality of life research: a theoretical model.

ICUD-EAU International Consultation on Bladder Cancer 2012: Urinary diversion.

Muscle invasive bladder cancer: examining survivor burden and unmet needs.

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