Assessing health-related quality of life in urology – a survey of 4500 German urologists

Questionnaire development

In numerous successive expert meetings (A.W., V.R, A.K.) we developed the survey and, to test its usability, conducted two subsequent pre-tests, improving the design after the first pre-test (n = 16) and, due to satisfactory results, finalizing it following the second pre-test (n = 10).

The final survey consisted of three parts:

(1) 15 closed questions about the attitude towards HRQOL (Likert-scales),

(2) eight questions concerning the assessment of HRQOL in clinical routine (30 items in total for multiple choice questions and extra space for comments),

(3) demographic data (year of birth, year of specialty certification, working environment) and the last two items from the EORTC-QLQ-C30 to assess the HRQOL of the study participants [8–10] as well as extra space for comments.

Postal survey

We conducted a cross-sectional, nationwide postal survey of German urologists. The addresses were previously obtained from the register of the Association of the Statutory Health Insurance for Physicians and the German Association of Urologists. Our financial resources were capable of covering a survey of 4500; as such, after the revision of the database, a random sample of 4500 out of 5200 urologists was drawn.

The questionnaire was sent out with a post-paid return envelope. We identified non-respondents and sent them a reminder, containing the survey, six weeks after the initial dispatch.

Statistics

We hypothesized that the HRQOL played an essential role in clinical practice if more than 30% of participants were employing validated questionnaires for recorded HRQOL assessment.

Besides the hypothesis, our study had a mainly exploratory character and we produced primarily descriptive statistics. Additionally, to provide finer distinctiveness, Likert-scale items were added as follows: ‘absolutely disagree’ and ‘slightly disagree’ were condensed into ‘disagree’; consequently, ‘fairly agree’ and ‘absolutely agree’ were subsumed into the category ‘agree’. One question had a different scale so that ‘absolutely not important’ and ‘slightly important’ became ‘not important’, ‘fairly important’, ‘very important’ and ‘important’, while ‘more or less important’ was not included in either category.

Participants were divided into subgroups by gender, age, working environment and status of specialty training to investigate possible group differences. The subgroup analysis was calculated using Chi-square tests and logistic regression. The complete data analysis was accomplished using SPSS 20.0 software.

Sample description

We contacted 4500 German urologists. The response rate was 37.9%. Accordingly, there were no statistically significant differences between the socio-demographics of respondents and non-respondents.

Attitude towards HRQOL

Barriers to HRQOL assessment

The payment for HRQOL questionnaires was regularly considered inadmissible (77.2%, Table 2). Half of the physicians considered the effort of HRQOL assessment as too voluminous (50.2%). Furthermore, urologists from private practices reported this more frequently (OR = 1.43; 95% CI: 1.14–1.80) than those working in hospitals.

The HRQOL questionnaires were regarded by half of the physicians as disadvantageous due to their length (52.3%) and the complexity of their interpretation (48.1%). Both disadvantages were reported more frequently by physicians in private practice (length: OR = 1.50; 95% CI: 1.14–1.97 / complexity: OR = 1.64; 95% CI: 1.26–2.19) compared with their colleagues from hospitals.

A significant number of urologists regarded themselves to be adequately trained to assess HRQOL (86.2%). Conversely, those from private practices considered themselves less sufficiently trained (OR = 0.62; 95% CI: 0.44–0.88) than those doctors from hospitals.

Most urologists said it was impossible to invoice the HRQOL assessment due to a missing number in the medical-fee schedule (79.7%, Table 2). Nonetheless, this has been our survey’s most frequently unanswered question. Consequently, private practice physicians tended to answer it twice as often (OR = 2.32; 95% CI: 1.60–3.37) when compared with hospital doctors.

Clinical implementation of HRQOL

The second part of our survey examined the clinical implementation of HRQOL. Almost every urologist assessed HRQOL (93.5%). There were no differences between subgroups.

Patient cohorts

Urologists most frequently assessed HRQOL in prostate cancer patients (63.5%) followed by those with incontinence (53.2%). Conversely, only a few doctors assessed HRQOL in patients with testosterone deficiency (31.8%; Fig. 1).

General attitudes towards HRQOL and its clinical use

In general, urologists expressed interest in HRQOL assessment and were positive towards its clinical implementation, as had been found in other studies [5, 15, 16]. The positive image of HRQOL in urological guidelines [6] may have generated additional interest in the subject.

Most urologists agreed that the understanding of HRQOL among people might alternate. The WHO defines HRQOL as: ‘individuals’ 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’ [1]. HRQOL can change at different stages of both disease and therapy as various concerns may arise [17].

HRQOL assessment enhances doctor-patient communication, facilitates the discussion of the psychosocial impact of the disease and ultimately improves the patient’s HRQOL [17–19]. In our study urologists perceived HRQOL assessment as valuable and suitable for daily use, while earlier surveys indicated that only a minority of physicians recognized the assessment of HRQOL as useful in clinical practice. Overall, there may have been a change of perception regarding HRQOL [2, 20].

In our study urologists felt confident to assess HRQOL, while in a different study pediatricians did not consider themselves to be sufficiently trained to assess HRQOL [15]. The different opinions may have been caused by the higher complexity of HRQOL assessment for children (including the intricacy of proxy methods) [21, 22].

The majority of urologists disapproved of the length and complexity of HRQOL questionnaires, while in another study physicians requested simplified scales for better applicability [16]. Notwithstanding, simplified scales may entail the risk of reductionism and the multidimensional construct of HRQOL could lose its significance. For an improved usability and easier HRQOL assessment in clinical routine, the employment of ten visual analogous scales was suggested [23].

Constraints of both time and financial resources were mentioned in our study. Nonetheless, these results did not differ much from previous findings [2, 24, 25]. However, the deficit of economic resources may be expedited by the impossibility of invoice for HRQOL assessment due to the German medical-fee schedule [26]. Consequently, to facilitate patient-centered care, the medical-fee schedule may have to be changed.

Practical use of HRQOL in clinical routine

Urologists mostly assessed HRQOL in patients with prostate cancer, incontinence, and benign prostate hyperplasia. It may be that, out of all German urological guidelines, only those concerning these three conditions recommend strategies for HRQOL assessment [6]. Moreover, German urologists are likely to follow national guidelines, as has been proven in a recent survey [27]. Consequently, the enhancement of strategies for HRQOL assessment in guidelines for other diseases may aid HRQOL implementation.

HRQOL was assessed to support a therapy choice, create a baseline measure, and evaluate a follow-up status. It was least frequently evaluated for research purposes. This finding is especially interesting as most other studies have shown that HRQOL was primarily obtained for research purposes [5]. Supporting a therapy choice, creating a baseline measure, and evaluating a follow-up status are altogether important in patient-centered care. However, we believe that patients may benefit more from a continuous HRQOL assessment as proposed by Velikova et al. [17].

Evaluation of recorded and verbal HRQOL assessment

The standardized, recorded HRQOL assessment is shown to influence doctor-patient communication positively and ultimately enhance the patient’s HRQOL [17–19]. It is evident that physicians must verbalize HRQOL and hence the differentiation of recorded and verbal approaches may seem academic. Consequently, less than 10 % used a recorded-only approach. However, it was important to investigate the use of standardized measures, which in turn are predominantly designed for recorded use. Most urologists used combined (verbal and written) HRQOL assessment.

Standardization of such a personal, individual and subjective measure as HRQOL raised skepticism among Wilm et al. [28], who argued that standardized measures would fail to incorporate individualized concepts of disease and bring a ‘scientific bias’ in approaching patients. Furthermore, proxy measures would raise unsolved methodological and ethical questions. Hence Wilm et al. advocated an open question: ‘How are you?’, to address HRQOL [28]. Our survey showed, however, that less than a quarter of urologists have exclusively asked this question.

Among numerous factors, doctor-patient communication is relationship based. Therefore, ‘How are you?’ is a question that may fail to address the multiple dimensions of HRQOL [29], whereas standardized HRQOL measurement proved to facilitate the doctor-patient relationship and, furthermore, enhance patients’ HRQOL [17–19].

An open question has reportedly failed to address important HRQOL issues, ascribed to a discrepancy in the topics of most importance to patients, who preferred to address social, psychological and spiritual issues, and doctors, who preferred to discuss the physical functioning and wellbeing [30]. Consequently, a standardized measure provides a chance to integrate all dimensions of HRQOL.

Wilson et al. investigated possible inadequacies of the standardized HRQOL measures [31]. However, contrary to Wilm et al., the Wilson group did not advise against their use but encouraged it in combination with an open discussion of HRQOL [31]. The same recommendations were given based on the results of other studies [16, 32].

Used questionnaires

In our study, the IPSS had been the most frequently reported instrument used for HRQOL assessment. The German Society of Urology (DGU) recommends the use of IPSS for HRQOL assessment in patients with benign prostate hyperplasia [33]. It consists of a few symptom questions and a ‘bother score’ [34]. Although it is recommended for HRQOL assessment, it does not cover the psychosocial and spiritual dimensions of HRQOL, and hence important aspects of HRQOL may get lost. However, similarly to the ‘distress thermometer’ [35], clinicians could use the IPSS (and similar ‘bother scores’) as a screening for HRQOL impairment to decide whether to refer patients to a psychologist or a psycho-oncologist.

Compared to IPSS the EORTC-QLQ-C30 is a rather extensive HRQOL score. It is recommended by DGU for HRQOL assessment in patients with prostate cancer [36]. However, less than 5 % of our study participants have applied it in their clinical routine. More frequently, they reported using the Karnofsky Index and IIEF to assess HRQOL. However, these instruments are not capable of determining HRQOL. Similar to ECOG, the Karnofsky Index has been developed to evaluate general performance status [7, 37]. While these scores consist of single scales, the structure of IIEF is more complex. IIEF assesses Patient Reported Outcomes (PROs) related to erectile dysfunction using 15 Likert-scales. However, it does not measure the multidimensional concept of HRQOL [38]. These findings suggest that study participants may not have distinguished between Patient Reported Outcome Measures (PROMs) and HRQOL. Another study found that urologists were, in general, more accurate in recording sexual and incontinence symptoms (PROMs) than HRQOL [37].

PROMs and HRQOL are also frequently confused in the literature. For example, Doehn and Jocham discussed ECOG and the Karnofsky Index extensively in their review article on HRQOL assessment in urology, yet left unmentioned that both scores are incapable of measuring HRQOL [7]. Using the Karnofsky Index, urologists failed to detect significant role limitations [37].

Another example of the misrepresentation of HRQOL assessment is the recently published ‘Expanded Prostate Cancer Index Composite for Clinical Practice’ (EPIC-CP). It consists of 16 scales, each assessing the intensity of prostate-cancer-related symptoms [39]. Not a single scale evaluates psychosocial (or spiritual) aspects of the disease, hence failing to address the multidimensional concept of HRQOL as defined by the WHO [39].

Clinical implications

Our findings are important for clinicians as they illustrate a typical pattern of clinical HRQOL assessment. The fact that over 60 % claim to assess HRQOL, while most of them use symptom-screening scales such as IPSS and some only ask an open question (‘How are you?’), is of particular importance for the clinical routine. Following either of the above strategies may lead to failure to assess the full spectrum of HRQOL [30, 34]. To avoid this, distinguishing separate PROMs from HRQOL is crucial. Furthermore, physicians tend to underestimate the impact of disease on patients’ HRQOL and hence should administer appropriate questionnaires [37].

We propose the use of validated instruments to investigate the impact of HRQOL on the disease, successional to an open discussion of HRQOL [16, 31, 32]. Consequently, along with Velikova et al., we recommend putting the emphasis of HRQOL assessment on the complaints that affect particular HRQOL dimensions according to the stages of chronic disease [17].