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Keywords:

  • Bladder cancer;
  • orthotopic bladder substitution;
  • quality of life;
  • view of life

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors

ObjectiveTo investigate possible differences between Italian and Swedish men in health-related quality of life (HRQL) after cystectomy and orthotopic bladder substitution for bladder cancer.

Patients and methodsThirty-three men in Padua, Italy and 33 in Lund, Sweden were assessed after respective mean postoperative periods of 42 and 52 months. Three questionnaires were used: (i) dealing with view-of-life issues; (ii) the core questionnaire QLQ-C30(+3) from the European Organization for Research and Treatment of Cacncer, with added questions on urinary symptoms and sexuality; and (iii) one focusing on postoperative psychosocial and sexual adjustment.

ResultsWhile Italian and Swedish men did not differ in their central values, they differed significantly in belief-related values, such as religion. Urinary prob-lems and erectile dysfunction were common in both groups, the former possibly commoner in the Swedish men and the latter in the Italians. Changes in mood and self-esteem were common in both groups. On a visual analogue scale, the Italian men reported a worse present mood than the Swedish men, but expressed a more favourable outlook on their future.

ConclusionDespite differences in philosophical attitudes between Italian and Swedish men, there were no major differences in HRQL. Caution is required in interpreting these findings because there were few participants and the possible inadequacy of the methods used to evaluate the complex concept of quality of life.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors

Quality of life is increasingly included when evaluating medical and surgical procedures in urology. Despite criticism of using ‘quality of life’ as an endpoint in clinical studies and thereby potentially influencing patients’ lives [1], recording and in some way measuring patients’ concerns about their disease and its treatment and consequences would seem to be advantageous. In patients undergoing cystectomy for bladder cancer, considerable interest has focused on the postoperative state, with special reference to the method used to reconstruct the lower urinary tract. Continent urinary reconstruction, e.g. continent cutaneous diversion and orthotopic bladder substitution, has been assumed a priori to offer a better quality of life than an ileal conduit. However, reported studies have yielded somewhat varied results and have not shown modern techniques to be clearly superior to the conventional ileal conduit in postoperative adjustment and overall satisfaction [2–9]. Comparisons between these studies are greatly impeded by the use of different instruments to assess quality of life.

It seems reasonable to assume that the outcome of studies on psychosocial and sexual adjustment after major surgery can be influenced by the patients’ sociocultural background. An awareness of such a possible influence is essential in judging results concerning health-related quality of life (HRQL); the results in one population may not be valid in another. There is a need for studies that question the often stereotyped view of individuals from different countries or populations that tends to exist also among health professionals.

We therefore compared Italian and Swedish men who had been treated for bladder cancer with cystectomy and urinary tract reconstruction with an orthotopic bladder substitute, assuming different sociocultural environments in Italy and Sweden.

Patients and methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors

The study was approved by the ethical committee of Lund University and comprised 33 men from Lund (Sweden) and 33 men from Padua (Italy). The Lund group comprised all men who had undergone cystectomy and bladder substitution, and who were alive and with no sign of recurrent malignancy in January 1997, at least 6 months after surgery. The Padua group was chosen to match the Swedish patients as closely as possible in age and length of follow-up. The mean (range) age at cystectomy in the respective groups was 61 (43–73) years and 60 (72–74) years, and the mean time from operation to assessment was 52 (10–113) and 42 (7–108) months. Radical cystectomy with bilateral pelvic lymphadenectomy was performed in all cases; nerve-sparing was not attempted. The orthotopic neobladder was constructed from a detubularized right colonic segment [10] in Lund and from a detubularized ileal segment [11] in Padua.

Questionnaires of the following three types were used in the assessment of each patient:

(i) 26 questions dealing with general ‘view of life’, defined [12] as those theoretical and evaluative assumptions that within individuals comprise or are vitally important for an overall view of mankind and the world (15 questions), create a person’s central system of values (five questions), and express basic attitudes (six questions). A Likert scale with three response choices (total or partial agreement or no agreement) was used for 15 questions and a dichotomous scale (yes or no) for four questions. Multiple alternatives were given for answers to six questions, with a ranking order requested for some. One question concerned the patient’s interest in the topic of ‘outlook on life’. This questionnaire, although not tested for validity and reliability, has been developed over several years and was used in a large-scale study of life views in Swedish citizens [12].

(ii) A core questionnaire on quality of life, i.e. the QLQ-C30(+3) [13], which was evolved by the EORTC’s Study Group on Quality of Life to measure basic components of HRQL common to most malignancies. It is composed of five functional scales covering physical, role, emotional, cognitive and social aspects, and one global health status/QL scale. Three symptom scales concern fatigue, nausea/vomiting and pain. In addition, six single items deal with dyspnoea, insomnia, appetite loss, constipation, diarrhoea and financial difficulties caused by the disease or its treatment. For the questions on physical function there is a dichotomous response scale (yes/no), while global QL is scored from 1 (very poor) to 7 (excellent). For all other core items, a Likert scale offers four possible responses (1 = not at all, 2 = a little, 3 = quite a bit, 4 = very much). All scores are linearly transformed to a 0–100 scale, with high values indicating high/healthy function level, good QL or high symptom/problem level. As no specific bladder cancer model was available at the time of this study, eight questions on urinary symptoms and sexuality were added, with the same type of Likert response scale. These questions were part of a module specifically devised for prostate cancer and shown by formal testing to have satisfactory validity and internal consistency of scales for urinary function and sexuality [14].

(iii) 33 questions on postoperative psychosocial and sexual adjustment, and mood and emotions. This questionnaire was included in the study because the QLQ-C 30(+3) questionnaire does not cover these aspects well. A dichotomous response scale (yes/no) was used for responses to 26 of these questions and a visual analogue scale (VAS) (of 0–10) for seven, with 0 indicating very easy, very good or none/not at all and 10 very difficult, very poor/low or very much. Although not formally tested for validity and reliability, use of this questionnaire was guided by experience from previous clinical studies of patients after cystectomy for bladder cancer [7,9,15,16].

The QLQ-C30(+3) questionnaire was obtained in Italian and Swedish versions from the EORTC. All other questions were translated from Swedish into Italian by a native Italian speaker also fluent in Swedish, and then retranslated to Swedish by a native Swedish speaker, to check for accuracy. Minor adjustments were made after a pilot run with the translated questions in Italy.

The questionnaires were sent to 34 Swedish patients, one of whom declined to reply because of poor health (and who died 3 months later). In Italy, 45 patients received the questionnaires, which were completed by 35. Two patients were excluded to match the Swedish sample. The completed forms were brought by the patients to the respective urological outpatient department, where they were reviewed together with one of the authors, to check for understanding.

The results were assessed statistically using the chi-square test, Wilcoxon two-sample test and Fisher’s exact test.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors

View-of-life questionnaire

Replies to 14 of these 26 questions differed between the Italian and the Swedish men. Thus, for the ‘overall view of mankind and the world’, more Italian than Swedish men expressed a belief in a deity or supernatural power (P < 0.001), in an afterlife (P < 0.001), that life, although chaotic and complicated, has an inner order that will eventually be understood (P < 0.01), that man’s fate is mainly determined by biological heritage (P < 0.05), but also that social environment is the main determining factor, and that mankind is more than physical substance (P < 0.01). Swedish men more often believed in the primary goodness of mankind (P < 0.001), but also in primary egotism (P < 0.05). Italian men more often believed in the individual’s intrinsic value, not bound to deeds (P < 0.01), that a difficult experience of life often deepens understanding (P < 0.01), and more often had sometimes felt closeness to a spiritual power (P < 0.01). Mankind’s most important goals in life were regarded by the Italian men to be, in descending order, happiness, honesty and care of the family, while the Swedish men put honesty above happiness. The most important character trait was stated by both groups to be honesty.

There were no differences in replies on the ‘central system of values’. Italian men listed health, moral and global values, in that order, as the most important in life, while the order preferred by the Swedish men was global, moral and health. Of less importance to both groups wereother values, e.g. economic, private, religious and aesthetic, and influence on or power over other people. Most Italian and Swedish men disagreed partly or wholly with the concept that humans have total freedom of choice and can determine their life course. The populations did not differ in factors decisive for the course of life. In a choice between personal freedom and equality, 13 Italian men would prefer the former and 20 the latter, while the numbers for Swedish men were 17 vs 16 (not significant).

For ‘basic attitudes’, most men in both groups (26 and 21, respectively, not significant) expressed contentment with life so far, but confidence in the future was greater among the Italian men (P < 0.01). Interest in view-of life questions was keen in 10 and fairly keen in 18 Italian men, and in six and 13 Swedish men (P = 0.06).

Core questionnaire on quality of life

There was no statistical difference in any reply to the questions in the QLQ–C30(+3) between Italian and Swedish men. The mean scores for physical, role, emotional, cognitive and social functioning were 85–95. Means for standard and new global health status/QL were both 83 for Italian men and both 80 for Swedish men. Symptom scores were low in both groups (Table 1). Nor did the two groups differ significantly in replies to the eight questions on urinary symptoms and sexuality, although there was a tendency to fewer urinary symptoms in the Italian men and fewer sexual problems in the Swedish men (Table 2).

Table 1.  Symptom scores, VAS scores for general postoperative adjustment, patients’ experience of neobladder function, interpersonal relations and sexual dysfunction, and mood and emotions in both groups; n = 33 in both groups except *n = 32 and †n = 31
Mean (SD) score or no. of patientsItalian menSwedish men
Symptom score
Fatigue13.5 (19.2)16.8 (24.4)
Nausea and vomiting 3.5 (13.0) 5.1 (18.4)
Pain 6.1 (11.7) 9.1 (24.0)
Dyspnoea 6.1 (15.5)16.7 (28.1)
Insomnia 8.1 (16.7)16.2 (31.3)
Appetite loss 4.0 (6.1) 6.1 (19.5)
Constipation 9.1 (22.5)11.1 (25.9)
Diarrhoea 8.1 (14.5) 6.1 (19.5)
Financial difficulties12.1 (24.7) 6.1 (21.2)
VAS score
How well did you cope with the first month at home after surgery? 5.19 (3.58)* 4.68 (2.45)
How well are you coping now? 3.46 (3.34) 2.13 (2.17)
How do you rate your present contact with the hospital? 1.39 (2.25) 1.14 (1.23)
Does your reconstructed urinary tract cause problems (urine leakage, difficult catheterization, etc.)? 3.13 (3.47)  3.13 (2.27)
Has the operation given rise to emotional problems? 3.82 (3.15) 2.85 (2.70)
Are you afraid that the malignancy may recur? 4.15 (3.06) 2.33 (1.66)
Neobladder function (number of patients answering ‘yes’)
Do you often think of your changed way of urinating?13*10
Does that disturb you?1113
Are you always conscious of the change?2621
Or has it become almost natural for you?2421
Are some special situations difficult to manage?911
Interpersonal relations/sexual function (number of patients answering ‘yes’)
Has the operation influenced your social relationships?7*4
Has it affected relations with your spouse/partner?
positively?7†3*
negatively?10†7*
Has your sexual potency changed?31*30
Has your sexual drive changed?22*20
Can you achieve erection?2*9 (P < 0.05)
Can you achieve orgasm?11*13
Do you have sexual cohabitation?5†9
Can you and your wife/partner discuss these matters?25*29
Should more time be given to such problems?16*18
Mood and emotions (number of patients answering ‘yes’)
Has your general mental state (mood) changed?12*7
Do you view things in general differently now?1613
Has your disease changed your self-esteem?1212
Can you accept having had the disease and the con-
sequences of its treatment?3033
Can you accept your present situation?3132
Table 2.  Urinary symptoms and sexuality in Italian (I) and Swedish (S) men: n = 33 in both groups except *n = 32
Question GroupNot at all A littleQuite a bitVery much
During the past week
Have you had difficulty in emptying your bladder?I21930
S21732
Do you have to urinate frequently?I*211010
S23631
Are you troubled by leakage of urine?I*131621
S81771
Have you had symptoms (smarting, ‘pins & needles’, pain)I*28310
from your urethra?S25710
Has your urinary stream deteriorated?I191121
S101445
Does your condition limit your interest in sex?I65616
S510513
Are you limited in ability to have or maintain an erection?I02328
S44322
Does your condition interfere with your enjoyment of sex? I S7 63 73 420 16

Postoperative psychosocial and sexual adjustment

Only two significant differences were revealed in this questionnaire. On the VAS scale, with 0 denoting very good and 10 very low mood, Swedish men scored 2.33 and Italian men 4.15 (P < 0.05). Nevertheless, more Italian than Swedish men with above-average mood scores expressed confidence in the future, i.e. 10 of 17 vs three of 14 (P < 0.05). Erectile ability was claimed by nine Swedes but only two Italians (P < 0.05). VAS scales for some questions on general postoperative adjustment showed a gradual improvement after the operation, but practical and emotional problems and fear of recurrent malignancy remained in both patient groups (Table 1). The replies to questions on patients’ experience of the function of the reconstructed urinary tract (Table 1) mirrored those to the added questions in the EORTC core questionnaire, with one-third of the patients reporting negative feelings.

Changes in social relations were uncommon; some patients reported negative changes in relations with spouse/partner, and impaired sexual drive and erectile ability were commonly reported by men of both nationalities (Table 1). Apart from the better present mood in the Swedish group, the two groups did not differ in replies to questions on mood and emotions. Mood changes following the operation were common, as were changes in self-esteem. However, almost all patients reported acceptance of the disease and of their present situation (Table 1).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors

The potential influence of sociocultural settings on the concept of HRQL has only recently been appreciated. The interpretation of findings in QL studies must be guided by an awareness of the cultural pattern of the studied population, which may vary among countries. The importance of this awareness is heightened if the findings influence medical decision-making. However, cross-cultural studies on quality of life are few and to our knowledge only two are concerned with urology [17,18], both comparing HRQL associated with LUTS in men in different countries [17,18].

Most cross-cultural studies use questionnaires, although these are subject to notorious difficulties. The problems include lack of an acceptable definition of quality of life, cultural differences in perception and expression of both physical and mental/emotional symptoms, imprecise translation, and the apparent reliance of most questionnaires largely on functional abilities, not all of which may be translatable into quality of life [19]. While recognizing these problems, we nevertheless regard this comparison of Italian and Swedish men as valid, in view of the current interest in urinary tract reconstruction with an orthotopic bladder substitute after cystectomy.

A culture, defined as ‘an historically transmitted pattern or meanings embodied in symbols, a system of inherited conceptions expressed in symbolic form by means of which men communicate, perpetuate and develop their knowledge about and attitudes towards life’[20], largely determines the life-view of people which it embraces. As in most western European countries, Italy and Sweden have undergone a shift from ‘modern’ to ‘postmodern’ values, with increased emphasis on indi-vidual self-expression and quality of life. That shift was shown to be greater in Italy than in Sweden in 1981–90 [21] and the difference between these countries seems less than before. In the present study the Italian and Swedish men expressed similar central values (moral, health and global), but differed considerably in the influence of religion. Despite the diminution of clerical authority in postmodern society, that influence was clear in the Italian men, and much greater than in the Swedish men. Although the sample sizes were small, such a difference has been substantiated [21]. Belief systems can be essential for the human ability to cope with serious and stressful situations instead of tending to withdraw from them [22]. An ability to find meaning in a negative event is usually associated with less distress and better psychological adjustment [23]. In this context it seems relevant that the Italian men, despite lower mood scores, expressed a more positive attitude to their future. Otherwise there were no differences in adjustment between the populations. It thus seems that differences in the view of life, and possibly in social and financial support, between the countries did not influence this adjustment. It is unclear if such differences would influence adaptation after surgery resulting in stoma formation.

The present study confirmed that two common problems after cystectomy and orthotopic bladder substitution are urinary leakage/emptying difficulty and erectile dysfunction. There was a (not significant) trend to more urinary problems in the Swedish men and more sexual problems in the Italian men. Conceivably, the right colon (used in Sweden), even when detubularized, could give rise to higher intraluminal pressure than the detubularized ileal segment (in Italy), but this hypothesis has not been tested satisfactorily. The better preservation of erectile function in Swedish men is difficult to explain. Intergroup differences in defining urinary leakage and erection may offer some explanation. In a study of patients with a urethral Kock pouch [24], only a minority reported sexual activity.

Although patients in both countries gradually adjusted to their changed circumstances, a considerable number had persistent practical and emotional problems due to symptoms from the reconstructed urinary tract. A recent interview-based study comparing ileal conduit, continent cutaneous diversion and orthotopic bladder substitution after radical cystectomy revealed such problems in most of the patients, with no intergroup difference [9].

Acceptance of the disease and the present situation was almost universal in the present study, and was reflected as high scores for global health status in the EORTC questionnaire. Similar results were reported from another study [3]. Can such findings be interpreted as a good quality of life? Do they form the basis for the currently common spoken or written view of urologists that orthotopic bladder substitution gives (or preserves) good (or excellent) quality of life? The present high scores obtained in the EORTC questionnaire for emotional functioning seemed to differ from the findings in the other questionnaire, that changes in mood and self-esteem were common sequelae of surgery. Such changes seem to be even more common when an interview (a qualitative technique, as opposed to the quantitative questionnaire) is used to assess emotional problems after cystectomy [9].

We conclude that HRQL after cystectomy and orthotopic bladder substitution does not differ between Italian and Swedish men, despite differences in the patients’ value systems. Urinary symptoms, sexual problems and disturbances of mood are common sequelae. HRQL nevertheless seems to be well preserved according to the EORTC criteria. Does this truly equal a good quality of life? The following statement [1] may well be valid: ‘Quality of life is, after all, a hypothetical construct, not an entity; as such it may defy statistical manipulation. There is growing support for the view that the existential and dynamic experiences which would seem to fall under the rubric of quality of life are unsuited to measurement and the relatively small role which health status appears to play in quality of life makes it a problematic concept for the clinicians’.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors

The authors acknowledge the valuable comments made by Professor Anders Jeffner (Faculty of Theology, Uppsala University) on the aspect of life philosophy. This study was supported by grants from The Swedish Cancer Society (No. 3789-B96-01XAB) and from GAE Nilsson Cancer Foundation, Helsingborg, Sweden.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors
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Authors

  1. Top of page
  2. Abstract
  3. Introduction
  4. Patients and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
  9. Authors

Å. Månsson, RN, PhD, Lecturer in Nursing.

Å. Cåruso, MD.

E. Capovilla, MD.

S. Colleen, MD, PhD, Associate Professor.

P. Bassi, MD, Associate Professor.

F. Pagano, MD, Professor.

W. Månsson,MD, PhD, Associate Professor.