The principal aims of the study were to determine the importance of HRQOL in a clinical setting, to evaluate how useful, comprehensive and feasible clinicians find HRQOL assessment, to ascertain the most significant patient cohorts and aims for HRQOL assessment, and to describe the methods and instruments used.
Among our 1557 study participants, the attitude towards HRQOL was mainly positive, and most urologists considered HRQOL necessary as part of their clinical routine. The barriers towards the implementation of routine HRQOL assessment were constraints on time and financial resources. The length and complexity of questionnaires also had an adverse impact on HRQOL assessment. Our respondents regularly measured HRQOL in prostate cancer patients and patients with incontinence. Furthermore, they predominantly assessed HRQOL to determine a therapy, evaluate a follow-up or measure a baseline.
The central hypothesis of the survey was that HRQOL achieved an essential role in clinical practice if more than 30% of participants were employing validated questionnaires for recorded HRQOL assessment. These results suggest that the hypothesis was proven to be correct. While almost every respondent assessed HRQOL, more than 60 % employed validated questionnaires for recorded HRQOL assessment.
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 [17,18,19]. 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 [17,18,19]. 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 [17,18,19].
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].
Importance and limitations
Primarily, HRQOL has achieved an essential role in clinical practice. This conclusion is supported by the fact that over 60 % of urologists reported frequent use of validated HRQOL questionnaires.
Nevertheless, a response bias may be a limitation, as respondents may have been more interested in the study topic than non-respondents [11]. Response bias can be calculated by estimating the difference between the demographics of respondents and non-respondents [12,13,14], as demographics can be associated with the attitude towards the survey topic. In our subgroup analysis, females were associated with lesser use of validated HRQOL instruments. However, this has not affected the response bias as no significant differences between the demographics of respondents and non-respondents were found.
A qualitative interrogation of non-respondents could have provided a better understanding of the non-respondents and helped to weigh the non-response bias. However, due to lack of fiscal and personnel resources such qualitative analysis could not be determined.
The use of a non-validated instrument could be considered a limitation. Therefore, ahead of the survey, the instrument’s feasibility was examined with two subsequent pre-tests. It was the first explorative study of its kind and the use of the questionnaire seems to be justified.
The survey was concluded nationwide, had a comparatively high response rate compared to other surveys among physicians and the socio-demographics of respondents did not differ significantly from non-respondents. Consequently, the chance of a response bias seems to be low.
Our survey addressed a general population of urologists and, therefore, the results could be considered generalizable, while other studies [3, 5] were based on rather specific populations and may have suffered from a selection bias.
To our knowledge, this is the first survey of German urologists on HRQOL in clinical routine. It provides detailed insights on the integration of HRQOL.
