A Swedish version of a quality of life questionnaire for partners of men with symptoms suggestive of benign prostatic obstruction

Transcription

1 Scandinavian Journal of Urology and Nephrology, 2008; 42: ORIGINAL ARTICLE A Swedish version of a quality of life questionnaire for partners of men with symptoms suggestive of benign prostatic obstruction HELÉN MARKLUND-BAU 1,2, ULLA EDÉLL-GUSTAFSSON 2 & ANDERS SPÅNGBERG 1 1 Department of Biomedicine and Surgery, University Hospital and 2 Department of Medicine and Care, Division of Nursing Science, Faculty of Health Sciences, Linköping University, Linköping, Sweden Abstract Objectives. Little is known about the quality of life experienced by the partners of men with lower urinary tract symptoms (LUTS) suggestive of benign prostatic obstruction (BPO). The aims of this study were to translate a specific quality of life questionnaire for partners to patients with benign prostatic enlargement (BPE)/BPO to swedish and to test its reliability and responsiveness. A secondary aim was to evaluate the impact the patients urinary symptoms have on their partners specific quality of life. Material and methods. This study was conducted using two groups: a reliability partner group; and a responsiveness/evaluation partner group. Both groups consisted of the partners of patients on the waiting list for transurethral resection of the prostate (TURP). The reliability of the quality of life questionnaire for the partners of men with BPE/BPO was tested in 51 partners, with a testretest interval of 5 weeks. The partners specific quality of life and the responsiveness of the questionnaire were evaluated in 51 partners by administering the questionnaire before and 3 months after the patient s TURP. Results. At the testretest, the Spearman s rank correlation coefficient for each question varied between 0.59 and 0.86 and Cronbach s a was Partners were affected by the patients BPO symptoms. Compassion, worry about cancer and worry about an operation were the aspects of the specific quality of life that affected most partners (92%, 77% and 65%, respectively), whereas effects on spare time and household activities affected fewer partners: 35% and 24%, respectively. The specific quality of life among partners improved significantly after the patient s TURP. Conclusions. The Swedish version of a partner-specific quality of life questionnaire for men with LUTS suggestive of BPE/BPO had an acceptable reliability and responsiveness. Partners are affected by the patients symptoms, and it is emotional rather than practical aspects which most affect them. Key Words: Benign prostatic enlargement, benign prostatic obstruction, lower urinary tract symptoms, transurethral resection of the prostate, partner, quality of life, questionnaire, urinary symptoms Introduction Little is known about the quality of life experienced by the partners of men with lower urinary tract symptoms (LUTS) due to benign prostatic obstruction (BPO) and few studies have been based on validated and reliability-tested questionnaires. The prevalence of LUTS in the male population increases with age and has been estimated to be 20 25% for middle-aged men and 4077% for men aged ]70 years [13]. LUTS due to BPO have a strong association with sexual dysfunction [46]. A common and bothersome lower urinary tract symptom is nocturia [79], which also increases with age [10,11]. The symptoms adversely affect the quality of life (QOL) of the patient [49,1216]. The patient s urinary symptoms also affect his partner s QOL [1719]. In the literature one can find many different definitions of the concept of QOL. In this study, QOL is based on the World Health Organization (WHO) definition of An individual s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns [20]. A qualitative study by Ziegert et al. [21] showed that the partners of haemodialysis patients exhibited a great deal of stamina and neglected their own Correspondence: Helén Marklund-Bau, Urologiska kliniken i Östergötland, Universitetssjukhuset, Linköping, Sweden. Tel: Fax: Helen.marklund-bau@lio.se (Received 12 May 2007; accepted 13 September 2007) ISSN print/issn online # 2008 Taylor & Francis DOI: /

2 QOL questionnaire for partners of men with LUTS 127 health in order to cope with the demands of the patients. Bakas et al. [22] studied the caregivers of heart failure patients and showed that household tasks and managing patients moodiness and irritability caused great difficulty. Furthermore, the caregivers emotional and financial well-being, time for social activities and general health deteriorated. A review by Couper et al. [23], which focused on the psychological adjustment of female partners of men with prostate cancer, showed that the patient s disease can have marked psychosocial repercussions for their partners and that the partners are more distressed than the patients. Sells et al. [17] have developed a questionnaire to assess the specific QOL of the partners of patients with benign prostatic enlargement (BPE). Their study showed that the specific QOL of the wives or, in their words, the partner morbidity, was significantly associated with the severity of the urinary symptoms exhibited by her husband. Partners mostly reported sleep disturbances, fear of cancer, deterioration of their sex life and social disruption. In a questionnaire study among the partners of BPH patients, Mitropoulos et al. [18] found similar results, except that the partners morbidity was not always related to the patients symptoms. In a study involving structured telephone interviews with the partners of men with prostatic symptoms, Shvartzman et al. [19] found that the majority of these partners were affected by their husbands urinary symptoms and that sleep was the area of greatest concern, followed by problems related to sexual function and taking long trips. The aims of this study were to translate a specific quality of life questionnaire for partners to patients with BPE/BPO to Swedish and to test its reliability and responsiveness. A secondary aim was to evaluate the impact the patients urinary symptoms have on their partners QOL. Material and methods Subjects The study was conducted in two groups: a reliability group; and a responsiveness/evaluation group. Both groups consisted of the partners of patients on the waiting list for a transurethral resection of the prostate (TURP) at a university hospital in the Southeast region of Sweden. The patients (age range 5383 years) did not have an indwelling catheter and did not use clean intermittent catheterization. The treatment decision was based on the diagnosis of BPO as assessed by a urologist, according to a modified model of Hald [24], i.e. the patients were required to have bothersome symptoms, low maximum flow rate and an enlarged prostate. The reliability partner group The stability of the questionnaire was tested using a testretest interval of 5 weeks before the patients TURPs [25]. Between September 2004 and February 2005, 102 patients scheduled for a TURP received a letter, which they were asked to pass on to their partner. Twenty-six patients either did not have a partner, had an indwelling catheter or had already had a TURP and thus 76 partners were included in the survey. Nineteen partners declined to participate, and five did not respond to the reminders. At the retest, the questionnaires were mailed directly to the partners. The partners were encouraged to give feedback about the questionnaire. One partner did not answer the retest. A total of 51 partners completed the study. The responsiveness/evaluation partner group To test the questionnaire s responsiveness and to evaluate the partners specific QOL, the questionnaire was answered both before and 3 months after each patient s TURP. Between October 2003 and March 2004, 76 patients who visited the admission clinic 12 weeks before their TURPs were asked to take a sealed envelope containing information about the study and the first questionnaire to their partners. Twenty-one partners declined to participate and one did not respond to the reminders. Three months after the TURPs, the questionnaires were sent by mail to the partners. Three partners did not answer the follow-up. A total of 51 partners completed the study. Two reminders were sent within 4 weeks to the partners in the two groups. The Regional Research Ethics Committee approved the study. The questionnaire The questionnaire used was a structured questionnaire developed by Sells et al. [17] to assess partnerspecific QOL and intended for the partners of men with BPE. It has eight questions scored from 1 to 5, and a ninth overall question measuring specific QOL, scored from 1 to 7. In our questionnaire, we chose to use scores of 0 to 4 for the first eight questions and scores of 0 to 6 for the ninth question (Table I). A score of 0 represents the best possible situation and a higher score indicates a worse condition. The questions describe aspects of the partner s specific QOL. To identify these aspects, the authors and three independent professionals, one professor of psychiatry and two registered nurses, both with a PhD, separately identified one aspect for each question. The aspect proposed that agreed best with the issue concerned in each question according

3 128 H. Marklund-Bau et al. Table I. Description of the partner questionnaire for patients with LUTS suggestive of BPO, medians, quartiles and pvalues before versus after the patients TURP and Spearman s rank correlation coefficient in the reliability group. Median (Q 1 Q 3 ) Question a Aspect Scale Before TURP (n51) After TURP (n51) p-value b (before vs after) r s (test retest) 1. How many times on average does your husband/partner wake you up each night when he gets up to go to the toilet? 2. Do you get tired during the day because of being woken up at night? 3. Your social life may include seeing friends, going on day trips and hobbies. Are you limited in these sorts of activities by your husband s/ partner s urinary symptoms? 4. Do your husband s/partner s urinary symptoms make it difficult for you to do essential tasks, for example doing the shopping? 5. Do you get upset by the distress that your husband/partner suffers because of his urinary symptoms? 6. Have you noticed a worsening in your sex life since your husband/partner started having his urinary symptoms? 7. Do you worry that your husband s/partner s urinary symptoms may be caused by cancer? 8. Are you worried about the possibility of your husband/partner needing an operation to make him better? 9. How would you feel if you were to spend the rest of your life with your husband s/partner s symptoms the way they are now? Awakenings 04 (from not at all to ]4 times) 2 (13) 1 (12) Tiredness 04 (from no to a great deal) 0 (02) 0 (01) Spare-time activities Household activities 04 (from no to a great deal) 0 (02) 0 (00) (from no to a great deal) 0 (00) 0 (00) Compassion 04 (from no to a great deal) 2 (13) 1 (01) Sex life 04 (from no to a great deal) 1 (02) 0 (02) Worry 04 (from no to a great deal) 1 (13) 0 (01) Worry 04 (from no to a great deal) 1 (02) 0 (02) Specific QOL 06 (from perfectly happy to terrible) 3(35) 1 (03) a The word husband has been replaced with the words husband/partner in the Swedish version. b Wilcoxon s signed rank test. to the consensus of the authors was selected. To explore the relations between these aspects, a correlation analysis was performed. The original version of the questionnaire has been content-, construct- and criterion-validated. The homogeneity was tested with Cronbach s a (0.81) and psychometric tests showed that it was accepted and considered to have relevance among the partners of men with BPE [17]. Translation procedure of the questionnaire The questionnaire was translated into Swedish in the ethnographic mode to maintain meaning and cultural content [25]. The three authors separately translated the questionnaire and differences were discussed until a consensus was obtained. Thereafter, the questionnaire was translated back into its original language by three independent translators: a Swedish-speaking native American who has a PhD in Scandinavian languages; a native English physician with a PhD who grew up in Sweden; and a native Swedish technical writer with an MA degree in languages and education. The translations corresponded well with the original version apart from the fact that one of the translators preferred to use a timescale instead of the quantitative original scale for the response alternatives and that some synonyms were used. An exception from the procedure described above is that the word husband has been replaced with the words husband/partner in the Swedish version. Statistical analysis Medians, quartiles (Q 1 Q 3 ) and percentages were used for descriptive statistics. Spearman s rank correlation coefficient (r s ) was used to test the stability of each item in the questionnaire and the correlations between the questions. A homogeneity test or test of the internal consistency was performed using Cronbach s a [26]. Wilcoxon s signed rank test

4 QOL questionnaire for partners of men with LUTS 129 was used to test the responsiveness of each question and the change in the partners disease-specific QOL before and after the patient underwent his TURP. The MannWhitney U-test was used to test the difference between the reliability and responsiveness/ evaluation partner groups. The significance level was pb0.05. All analyses were performed using SPSS software (Version ; SPSS Inc, Chicago, IL). Results Internal missing values Regarding the total numbers of internal missing values for the two partner groups and their two responses (n 204), there were nine missing values for the question Worry about operation and eight for the question about sex life. The other questions had one to three missing values. None of the partners in the reliability group wrote any comments about the questions. Reliability Spearman s rank correlation coefficient (r s ) for the testretest interval varied between 0.59 and 0.86 for the different questions (Table I). For the first measurement occasion, the responses for the two groups were pooled (n 102) and Cronbach s a for the first eight questions was found to be Responsiveness and the partners specific QOL Medians, quartiles and p-values on the partners specific QOL questionnaire before and 3 months after the patients TURPs are shown in Table I. The partners specific QOL improved significantly (Wilcoxon s signed rank test) for all questions except for the question Worry about operation. Thus these eight questions have a verified responsiveness. The frequency distributions of the answers are shown in Table II. There was no significant difference between the responsiveness/evaluation group and the reliability group before TURP. Correlation analysis The correlations between the questions in the pooled group before TURP are shown in Table III. The question concerning worry about operation did not correlate significantly with the questions about awakenings, spare-time activities and household activities. Nor was worry about cancer significantly correlated with awakenings, tiredness, household activities and sex life. All the other correlations were significant and varied between 0.22 and Discussion In recent years, increasing interest has been shown in how patients diseases affect their partner or next of kin. We chose to translate the specific QOL questionnaire for the partners of men with BPE/BPO, which was constructed by Sells et al. [17]. An advantage of this instrument is that it is based on a literature study, and on interviews with urologists and allied health professionals as well as patients and their partners. The questions describe different aspects of the partner s specific QOL and are therefore not summed to give a total score. In Table II. Frequency distribution of the partners answers before and 3 months after the patient s TURP. Scores are shown in the form: before/after. Score (%) Question Awakenings d 20 b /24 20/41 28/26 28/10 4/0 Tiredness e 57 a /71 14/22 20/6 10/2 0/0 Spare-time activities e 65/71 10/22 18/6 8/2 0/0 Household activities e 77/90 6/8 8/2 10/0 0/0 Compassion e 8/49 20/28 28/12 33/8 12/4 Sex life e 45 b /63 8/8 29/16 12/8 6/6 Worry cancer e 24/63 28/6 20/8 20/8 10/6 Worry operation e 35 a /65 c 18/7 26/9 16/11 6/9 Specific QOL f 4/33 2/28 2/12 43/12 24/8 24/6 2/2 Internal missing values: a one partner; b two partners; c five partners. d Awakenings: 0not at all; 1less than once; 2once; 323 times; and 4]4 times each night. e The other questions: 0no; 1a little; 2somewhat; 3quite a lot; 4a great deal. f Specific QOL: 0perfectly happy; 1pleased; 2mostly satisfied; 3mixed (equally satisfied and dissatisfied); 4mostly dissatisfied; 5unhappy; and 6terrible.

5 130 H. Marklund-Bau et al. Table III. Correlation matrix showing Spearman s rank correlation coefficients between the items in the questionnaire. Awakenings Tiredness Spare-time activities Household activities Compassion Sex life Worry cancer Worry operation Tiredness 0.76 ** Spare-time activities 0.39 ** 0.34 ** Household activities 0.47 ** 0.43 ** 0.64 ** Compassion 0.33 ** 0.35 ** 0.32 ** 0.31 ** Sex life 0.32 ** 0.44 ** 0.27 ** 0.32 ** 0.28 ** Worry cancer * ** 0.19 Worry operation * ** 0.28 ** 0.56 ** Specific QOL 0.38 ** 0.39 ** 0.22 * 0.25 * 0.67 ** 0.29 ** 0.23 * 0.25 * * pb0.05; ** pb0.01. analogy with, for example, the International Prostatic Symptom Score [27], we chose to use a score of 0 for the best response alternative, while Sells et al. [17] used a score of 1 for this alternative. A score of 0 is more logical as this response means that the partner is not affected by the patient s symptoms. The questionnaire was validated by Sells et al. [17] but its reproducibility and responsiveness were not tested. In our study, the reproducibility measured with Spearman s rank correlation coefficient was 0.70 for all questions, except for those concerning household activities and worry about operation. The lower correlation for the question about household activities may be explained by the fact that most partners did not have any difficulties with these types of activities and answered no to this question and thus not all of the scale was used. The question concerning worry about operation is not suited to the situation in which an operation has already been decided upon or has just been performed. The responsiveness was evaluated for each single question and was shown for all questions, except for the question Worry about operation. This study showed that both before and after the TURP partners were affected emotionally rather than experiencing limitations in practical activities. The correlation analyses showed strong relations between compassion and worry about cancer and between compassion and specific QOL, whereas spare time and household activities were only weakly correlated with specific QOL. Three months after surgery the specific QOL experienced by the partners had improved significantly. Our findings before surgery are comparable with results reported by Bakas et al. [22] for the caregivers of heart failure patients and by Couper et al. [23] for the female partners of men with prostate cancer. We did not compare our results with those of Sells et al. [17] as they did not present the medians or frequency distributions of the answers. However, one limitation of with our study was that about one-third of the partners declined to participate. One advantage of the questionnaire is that the questions are expressed in general terms and so it could be used to assess the specific QOL of partners in the context of patients with other diseases if the words urinary symptoms are changed. The questionnaire can also be combined with other specific questionnaires for assessment of sleep, sex life, worry and health-related QOL. To further develop the questionnaire, questions could be added asking whether the partner has to help the patient with various tasks because of his urinary symptoms. For example, with our patient group it might be expected

6 QOL questionnaire for partners of men with LUTS 131 that some of the partners would have to do an increased amount of laundry. How the partners cope with the patients urinary problems may be age-dependent and this is an important issue for future studies. The partners responses also have to be related to their own diseases as well as to other relevant data and to the severity of the symptoms experienced by the patient. Then comparisons can be used to construct a framework for how partners are affected by the patients situation in the context of LUTS suggestive of BPO. A future strategy is to involve the partners in the management of the LUTS/BPO patients. For example, a partner may feel less worried and be able to cope better if invited to participate in the patient s consultations and if better informed about the patient s disease. Conclusions The Swedish version of a partner-specific QOL questionnaire for men with LUTS suggestive of BPE/BPO had acceptable reliability and responsiveness. Partners are affected by the patients BPO symptoms, and it is emotional rather than practical aspects which most affect them. Acknowledgement This study was supported by a grant from the Medical Research Council of Southeast Sweden. References [1] Trueman P, Hood SC, Nayak USL, Mrazek MF. Prevalence of lower urinary tract symptoms and self-reported diagnosed benign prostatic hyperplasia and their effect on quality of life in a community-based survey of men in the UK. BJU Int 1999;/83:/4105. [2] Boyle P, Robertson C, Mazzetta C, Keech M, Hobbs FDR, Fourcade R, et al. The prevalence of lower urinary tract symptoms in men and women in four centres. The UrEpik study. BJU Int 2003;/92:/ [3] Andersson S-O, Rashidkhani B, Karlberg L, Wolk A, Johansson J-E. Prevalence of lower urinary tract symptoms in men aged 4579 years: a population-based study of Swedish men. BJU Int 2004;/94:/ [4] Rosen RC. Update on the relationship between sexual dysfunction and lower urinary tract symptoms/benign hyperplasia. Curr Opin Urol 2006;/16:/119. [5] Rosen RC. Sexual dysfunction and lower urinary tract symptoms (LUTS) associated with benign prostatic hyperplasia. Eur Urol 2005;/47:/ [6] McVary KT. Erectile dysfunction and lower urinary tract symptoms secondary to BPH. Eur Urol 2005;/47:/ [7] Abrams P. Nocturia: the major problem in patients with lower urinary tract symptoms suggestive of benign prostatic obstruction (LUTS/BPO). Eur Urol 2005;/6(Suppl 3):/816 [8] Abrams P. Nocturia: the effect on sleep and related health consequences. Eur Urol 2005;/6(Suppl 3):/17. [9] Yoshimura K, Ohara O, Ichioka K, Terada N, Matsui Y, Terai A, et al. Nocturia and benign prostatic hyperplasia. Urology 2003;/61:/ [10] Van Kerrebroeck P, Abrams P, Chaikin D, Donovan J, Fonda D, Jackson S, et al. The standardization of terminology in nocturia: report from the standardization subcommittee of the International Continence Society. BJU Int 2002;/ 90(Suppl 3): /115. [11] Chasens E, Umlauf MG. Nocturia: a problem that disrupts sleep and predicts obstructive sleep apnea. Geriatr Nurs 2003;/24:/7681. [12] Eckhardt M, vanvenrooij G, van Melick H, Boon T. Prevalence and bothersomeness of lower urinary tract symptoms in benign prostatic hyperplasia and their impact on well-being. J Urol 2001;/166:/5638. [13] Salinas-Sanchez AS, Hernandez-Millian I, Lorenzo-Romero JG, Segura-Martin M, Fernández-Olano C, Virseda- Rodriguez JA. Quality of life of patients on the waiting list for benign prostatic hyperplasia surgery. Qual Life Res 2001;/ 10:/ [14] Jakobsson L, Lovén L, Rahm Hallberg I. Micturition problems in relation to quality of life in men with prostate caner or benign prostatic hyperplasia. Cancer Nurs 2004;/3: / [15] Barry MJ. Evaluation of symptoms and quality of life in men with benign prostatic hyperplasia. Urology 2001;/58(Suppl 6A):/2532. [16] Engström G, Henningsohn L, Walker-Engström ML, Leppert J. Impact on quality of life of different lower urinary tract symptoms in men measured by means of the SF 36 questionnaire. Scand J Urol Nephrol 2006;/40:/ [17] Sells H, Donovan J, Ewings P, Macdonagh RP. The development and validation of a quality-of-life measure to assess partner morbidity in benign prostatic enlargement. BJU Int 2000;/85:/4405. [18] Mitropoulos D, Anastasiou I, Giannopoulou C, Nikolopoulos P, Alamanis C, Zervas A, et al. Symptomatic benign prostate hyperplasia: impact on partners quality of life. Eur Urol 2002;/41:/2405. [19] Shvartzman P, Borkan JM, Stoliar L, Peleg A, Nakar S, Nir G, et al. Second-hand prostatism: effects of prostatic symptoms on spouses quality of life, daily routines and family relationship. Fam Pract 2001;/18:/6103. [20] The world health organization quality of life assessment (WHOQOL): position paper from the world health organization. Soc Sci Med 1995;41: [21] Ziegert K, Fridlund B, Lidell E. Health in everyday life among spouses of haemodialysis patients: a content analysis. Scand J Caring Sci 2006;/20:/2238. [22] Bakas T, Pressler SJ, Johnson EA, Nauser JA, Shaneyfelt T. Family caregiving in heart failure. Nurs Res 2006;/55:/1808. [23] Couper J, Bloch S, Love A, Macvean M, Duchesne G, Kissane D. Psychosocial adjustment of female partners of men with prostate cancer: a review of the literature. Psychooncology 2006;/15:/ [24] Hald T. Urodynamics in benign prostate hyperplasia. A survey. Prostate 1989;/2:/6977. [25] Burns N, Grove SK. The practice of nursing research: conduct, critique, and utilization, 5th ed. St. Louis, MO: Elsevier Saunders; pp. 74, [26] Cronbach LJ. Coefficient Alpha and the internal structure of tests. Psychometrika 1951;/16:/ [27] Barry MJ, Fowler FJ Jr, O Leary MP, Bruskewitz RC, Holtgreve HL, Mebust WK, et al. The American Urological Association symptom index for benign prostatic hyperplasia. J Urol 1992;/148:/

7