Alan D. Uren

Qualitative Exploration of the Patient Experience of Underactive Bladder

BACKGROUND Underactive bladder (UAB) is considered the symptom complex associated with the urodynamic diagnosis of detrusor underactivity. OBJECTIVE The aim of this research was to investigate the patient reported experience of the symptoms, signs, and impact of UAB. This research is also part of the initial qualitative phase for the development of a new patient reported outcome measure for the assessment of UAB. DESIGN, SETTING, AND PARTICIPANTS Qualitative methods were used to understand the experience of UAB from a patient perspective, in a purposive sample of male (n=29) and female (n=15) patients aged 27-88 yr (mean: 64 yr), diagnosed with a primary diagnosis of detrusor underactivity, with or without coexisting urological conditions. Semistructured interviews were conducted in Bristol, UK. RESULTS Male and female patients reported a variety of lower urinary tract symptoms and associated impact on quality of life. Storage symptoms of nocturia, increased daytime frequency, and urgency, and the voiding symptoms of slow stream, hesitancy, and straining were reported by over half of the patients. A sensation of incomplete emptying and postmicturition dribble were also frequently described. Most had a post void residual >30ml (n=34, 77%, median: 199ml) with many reporting urinary tract infections, a history of self-catheterisation, and some experiencing occasional acute retention episodes. These symptoms and signs can have a broad impact on quality of life including having to plan their daily activities around the location of toilets, disruption to sleep, social life, and associated effect on family and friends. CONCLUSIONS Knowledge of the lived experience of UAB obtained in the current study will be used for the development of a new patient reported outcome measure and help inform the current working definition of UAB. PATIENT SUMMARY The symptoms, signs, and impact on quality of life of underactive bladder are described by patients with the condition.

Definition and symptoms of underactive bladder

Underactive bladder (UAB) is a symptom syndrome reflecting the urodynamic observation of detrusor underactivity (DU), a voiding contraction of reduced strength and/or duration, leading to prolonged or incomplete bladder emptying. An International Continence Society Working Group has described UAB as characterised by a slow urinary stream, hesitancy and straining to void, with or without a feeling of incomplete bladder emptying and dribbling, often with storage symptoms. Since DU often coexists with bladder outlet obstruction, or storage dysfunction (detrusor overactivity or incontinence), the exact contribution of the DU to the presenting complaints can be difficult to establish. The presence of voiding and post voiding lower urinary tract symptoms (LUTS) is implicitly expected in UAB, but a reduced sensation of fullness is reported by some patients, and storage LUTS are also an important factor in many affected patients. These may result from a postvoid residual, but often they do not. The storage LUTS are often the key driver in leading the patient to seek healthcare input. Nocturia is particularly common and bothersome, but what the role of DU is in all the range of influences on nocturia has not been established. Qualitative research has established a broad impact on everyday life as a result of these symptoms. In general, people appear to manage the voiding LUTS relatively well, but the storage LUTS may be problematic.

Reply to Bora Lee and Jae Heon Kim's Letter to the Editor re: Alan D. Uren, Nikki Cotterill, Christopher Harding, et al. Qualitative Exploration of the Patient Experience of Underactive Bladder. Eur Urol 2017;72:402–7

We thank the authors for their letter on our article [1] and provide the following clarifications in response. A patientreported outcome (PRO) measure was not used as part of the methodology in this study. Indeed, PRO measure development requires a lengthy validation process, of which this was the initial phase. The findings support the development of a new PRO measure for the assessment of the signs, symptoms, and impact of underactive bladder (UAB). The study used qualitative methodology to explore the experience of UAB from a patient perspective using semistructured interviews, guided by an interview schedule. Patients were encouraged to talk in an open-ended manner about their experiences, using prompts from the interview schedule to “guide” discussion. A well-designed interview guide is important in order to help avoid possible interviewer bias or unintentional influence of the researcher on the type of responses from the subject. Exploratory qualitative interviews are particularly useful to explore around a topic for which little may be understood, as is the case with UAB. Direct patient input using qualitative research methodology is important for the demonstration of content validity when developing a new instrument [2,3]. Although the underlying aetiology of the presenting detrusor underactivity (DU) in the sample was not assessed, neurological patients were excluded. However, as UAB was the symptom complex under investigation, it was not necessary to ascertain the underlying aetiology of the DU at this stage. Indeed, there is a lack of evidence for the symptomatic presentation of its various aetiological origins, which requires further study. We took the pragmatic decision to categorise our sample by those with DU only and those with DU and coexisting conditions. This allowed the notable reporting of incontinence to be mainly associated with the inclusion of the group with those who demonstrated DU and coexisting detrusor

Psychometric equivalence of electronic and telephone completion of the ICIQ modules

To assess the equivalence of touch‐screen (hand‐held iPad) and telephone completion of patient‐completed International Consultation on Incontinence Questionnaire (ICIQ) modules by comparison with corresponding data collected using conventional paper‐and‐pencil methods.

Platinum PriorityReply from Authors re: Mikkel Fode, Jens Sønksen. Towards a Greater Understanding of Underactive Bladder. Eur Urol 2017;72:408–9

The editorial comments by Fode and Sønksen [1] on our study [2] are most welcome and raise a number of challenging issues. They are correct in suggesting that the strands of our underactive bladder (UAB)/detrusor underactivity (DU) research programme is work in progress. Further work is ongoing to develop the ICIQ-UAB patientreported outcome measure, noninvasive methods of diagnosing DU, and a more precise way of defining DU. For the modified definition proposed by Fode and Sønksen, we would like to draw attention to the recently published symptomatic definition proposed by the standardisation subcommittee of the International Continence Society included in a recent book by Chapple et al [3]: ‘‘Underactive bladder is characterised by a slow urinary stream, hesitancy and straining to void, with or without a feeling of incomplete bladder emptying and dribbling, often with storage symptoms’’. However, we would suggest that the current proposed definition above, which we support at this stage, is unlikely to be the definitive one in view of the ongoing research efforts of many. The editorial also raises further discussion as to how closely linked DU is to what has become termed UAB. This raises the question of whether all patients with a urodynamically confirmed diagnosis of DU are considered to have UAB, or only when such patients demonstrate symptoms such as slow flow, hesitancy, and straining. Our qualitative exploration of the reported symptoms [2] demonstrates that in patients with confirmed DU, the actual subjective

Reply from Authors re: Mikkel Fode, Jens Sønksen. Towards a Greater Understanding of Underactive Bladder. Eur Urol. In press. https://doi.org/10.1016/j.eururo.2017.04.017

The editorial comments by Fode and Sønksen [1] on our study [2] are most welcome and raise a number of challenging issues. They are correct in suggesting that the strands of our underactive bladder (UAB)/detrusor underactivity (DU) research programme is work in progress. Further work is ongoing to develop the ICIQ-UAB patientreported outcome measure, noninvasive methods of diagnosing DU, and a more precise way of defining DU. For the modified definition proposed by Fode and Sønksen, we would like to draw attention to the recently published symptomatic definition proposed by the standardisation subcommittee of the International Continence Society included in a recent book by Chapple et al [3]: ‘‘Underactive bladder is characterised by a slow urinary stream, hesitancy and straining to void, with or without a feeling of incomplete bladder emptying and dribbling, often with storage symptoms’’. However, we would suggest that the current proposed definition above, which we support at this stage, is unlikely to be the definitive one in view of the ongoing research efforts of many. The editorial also raises further discussion as to how closely linked DU is to what has become termed UAB. This raises the question of whether all patients with a urodynamically confirmed diagnosis of DU are considered to have UAB, or only when such patients demonstrate symptoms such as slow flow, hesitancy, and straining. Our qualitative exploration of the reported symptoms [2] demonstrates that in patients with confirmed DU, the actual subjective

Reply from Authors re: Mikkel Fode, Jens Sønksen. Towards a Greater Understanding of Underactive Bladder. Eur Urol 2017;72:408–9

The editorial comments by Fode and Sønksen [1] on our study [2] are most welcome and raise a number of challenging issues. They are correct in suggesting that the strands of our underactive bladder (UAB)/detrusor underactivity (DU) research programme is work in progress. Further work is ongoing to develop the ICIQ-UAB patientreported outcome measure, noninvasive methods of diagnosing DU, and a more precise way of defining DU. For the modified definition proposed by Fode and Sønksen, we would like to draw attention to the recently published symptomatic definition proposed by the standardisation subcommittee of the International Continence Society included in a recent book by Chapple et al [3]: ‘‘Underactive bladder is characterised by a slow urinary stream, hesitancy and straining to void, with or without a feeling of incomplete bladder emptying and dribbling, often with storage symptoms’’. However, we would suggest that the current proposed definition above, which we support at this stage, is unlikely to be the definitive one in view of the ongoing research efforts of many. The editorial also raises further discussion as to how closely linked DU is to what has become termed UAB. This raises the question of whether all patients with a urodynamically confirmed diagnosis of DU are considered to have UAB, or only when such patients demonstrate symptoms such as slow flow, hesitancy, and straining. Our qualitative exploration of the reported symptoms [2] demonstrates that in patients with confirmed DU, the actual subjective