The development of a patient-reported outcome measure for real-time symptom assessment in a population with functional urologic complaints-A focus group study.

AIMS: In the current diagnostic process for overactive bladder syndrome (OAB), biased retrospective questionnaires are often used. There is a need for a new assessment tool that embraces the heterogeneity of the OAB complex. A momentary assessment tool, the Experience Sampling Method (ESM) is promising, capturing random repetitive measurements during the day in the context of daily life and is capable to measure potential contextual triggers and psychological aspects. A focus group study was set up to evaluate which items should be implemented in a urological ESM. METHODS: Focus group interviews were arranged, to assess the suitability and comprehensibility of a newly developed urological patient-reported outcome measurement (PROM), "Uromate." "Uromate" was created based on ESM literature. A multidisciplinary expert meeting was conducted to gain consensus on item relevance. RESULTS: The initial ESM questionnaire contained 58 items, but was eventually reduced to 39 items after focus group sessions and expert meeting. Thirty-seven items are repeated questions, including three gender-dependent items. Two items are one-time questions about the use of incontinence material. Additionally, a morning questionnaire was included. Depending on the symptom pattern, a minimum of 26 items and a maximum of 36 items will be repeatedly assessed with "Uromate." CONCLUSION: There is a need for a modern assessment tool for OAB which overcomes the limitations of today's retrospective questionnaires. Therefore, a urological ESM tool, the "Uromate," is being developed as a PROM, following the FDA PROM development guidelines, to measure real-time symptoms in the context of daily life.

Screaming Body and Silent Healthcare Providers: A Case Study with a Childhood Sexual Abuse Survivor.

Stressful early life experiences cause immune dysregulation across the lifespan. Despite the fact that studies have identified childhood sexual abuse (CSA) survivors as a particularly vulnerable group, only a few attempts have been made to study their lived-experience of the physical health consequences of CSA. The aim of this study was to explore a female CSA survivor's lived-experience of the physical health consequences of CSA and how she experienced the reactions of healthcare providers. Seven interviews were conducted with this 40-year-old woman, Anne, using a phenomenological research approach. Anne was still a young child (two to three years old) when her father started to rape her. Since her childhood, she has experienced complex and widespread physical health consequences such as repeated vaginal and abdominal infections, widespread and chronic pain, sleeping problems, digestive problems, chronic back problems, fibromyalgia, musculoskeletal problems, repeated urinary tract infections, cervical dysplasia, inflammation of the Fallopian tubes, menorrhagia, endometrial hyperplasia, chlamydia, ovarian cysts, ectopic pregnancies, uterus problems, severe adhesions, and ovarian cancer. Anne disclosed her CSA experience to several healthcare providers but they were silent and failed to provide trauma-informed care. Anne's situation, albeit unique, might reflect similar problems in other female CSA survivors.

Profile and costs of secondary conditions resulting in emergency department presentations and readmission to hospital following traumatic spinal cord injury.

INTRODUCTION: People with traumatic spinal cord injury (SCI) face complex challenges in their care, recovery and life. Secondary conditions can develop to involve many body systems and can impact health, function, quality of life, and community participation. These secondary conditions can be costly, and many are preventable. The aim of this study was to describe the type and direct costs of secondary conditions requiring readmission to hospital, or visit to an emergency department (ED), within the first two years following traumatic spinal cord injury (SCI). METHODS: A retrospective cohort study using population-level linked data from hospital ED and admission datasets was undertaken in Victoria, Australia. The incidence and direct treatment costs of readmission to hospital and ED visit within 2-years post-injury for secondary conditions related to SCI were measured for the 356 persons with traumatic SCI with a date of injury from 2008 to 2011. RESULTS: Of the 356 cases, 141 (40%) experienced 366 (median 2, range 1-11) readmissions to hospital for secondary conditions. 95 (27%) visited an ED at least once, within two years of injury for a secondary condition. The cost of hospital readmissions was AUD$5,553,004 and AUD$87,790 for ED visits. The mean±SD cost was AUD$15,172±$20,957 per readmission and AUD$670±$198 per ED visit. Urological conditions (e.g. urinary tract infection) were most common, followed by pressure areas/ulcers for readmissions, and fractures in the ED. CONCLUSIONS: Hospitalisation for complications within two years of traumatic SCI was common and costly in Victoria, Australia. Improved bladder and pressure area management could result in substantial morbidity and cost savings following SCI.

Is there a discrepancy between patient and physician quality of life assessment?

AIMS: Quality of Life (QoL) assessment remains integral in the investigation of women with lower urinary tract dysfunction. Previous work suggests that physicians tend to underestimate patients' symptoms and the bother that they cause. The aim of this study was to assess the relationship between physician and patient assessed QoL using the Kings Health Questionnaire (KHQ). METHODS: Patients complaining of troublesome lower urinary tract symptoms (LUTS) were recruited from a tertiary referral urodynamic clinic. Prior to their clinic appointment they were sent a KHQ, which was completed before attending. After taking a detailed urogynecological history, a second KHQ was filled in by the physician, blinded to the patient responses, on the basis of their impression of the symptoms elicited during the interview. These data were analyzed by an independent statistician. Concordance between patient and physician assessment for individual questions was assessed using weighted kappa analysis. QoL scores were compared using Wilcoxons signed rank test. RESULTS: Seventy-five patients were recruited over a period of 5 months. Overall, the weighted kappa showed relatively poor concordance between the patient and physician responses; mean kappa: 0.33 (range 0.18-0.57). The physician underestimated QoL score in 4/9 domains by a mean of 5.5% and overestimated QoL score in 5/9 domains by a mean of 6.9%. In particular, physicians underestimated the impact of LUTS on social limitations and emotions (P < 0.05). CONCLUSION: This study confirms that physicians often differ from patients in the assessment of QoL. This is most likely due to a difference in patient-physician perception of "significant" LUTS and clearly demonstrates the importance of patient evaluated QoL in routine clinical assessment.

Influence of coping styles on quality of life in men with new and increasing lower urinary tract symptoms. The Krimpen Study in community-dwelling men.

OBJECTIVE: The present study aims to determine the influence of coping on quality of life (QOL) in elderly men developing lower urinary tract symptoms (LUTS). MATERIALS AND METHODS: Longitudinal population-based study with a follow-up period of 6.5 years on 1,688 men aged 50-78 years. Data were collected through self-administered questionnaires, including the Sickness Impact Profile (SIP, three domains), Inventory of Subjective Health (ISH), International Prostate Symptom Score (IPSS), and the Utrecht Coping List (UCL). Various physical and urological measurements were completed. Multiple linear regressions were used to determine the change in QOL in men with incident LUTS in relation to coping behavior. RESULTS: Overall no significant association is found between changes in LUTS with a change in QOL. However, a positive change in QOL is significantly associated with a change in LUTS when men use the coping style active problem solving and a negative relation exists with coping style reassuring thoughts. CONCLUSION: Different coping styles have a different impact on the relation between a change in LUTS and a change in generic QOL in community-dwelling elderly men. This makes a future exploration of the clinical treatment possibilities warranted.

An assessment of health related quality of life using the child health and illness profile-adolescent edition in adolescents with chronic kidney disease due to underlying urological disorders.

PURPOSE: We examined health related quality of life in adolescents with congenital urological disease causing kidney disease using a generic health related quality of life instrument. We then compared the results to those in adolescents with medical kidney disease and to population based norms. MATERIALS AND METHODS: The Child Health and Illness Profile-Adolescent Edition was administered to 113 patients 10 to 18 years old with chronic kidney disease. Mean domain and subdomain scores for adolescents with urological disease were compared to those of adolescents with medical kidney disease and to population based norms. RESULTS: The cohort included adolescents with an underlying diagnosis of congenital urological anomaly (37 patients) or other causes of kidney disease (76). Compared to adolescents with kidney disease caused by other factors, those with congenital urological disease scored statistically significantly better in the Child Health and Illness Profile-Adolescent Edition subdomain of Limitations of Activity (mean 22.3 [SD 2.5] vs 20.4 [SD 5.0], p = 0.04). Compared to population norms, adolescents with congenital disorders scored lower in the Disorders domain (mean 16.5, 95% CI 14.2 to 18.9) but better in the Risks domain (mean 25.9, 95% CI 25.1 to 26.6) and in the Home Safety and Health subdomain (mean 25.2, 95% CI 23.7 to 26.6). CONCLUSIONS: As assessed by the Child Health and Illness Profile-Adolescent Edition generic health status questionnaire, adolescents with kidney disease due to underlying congenital urological disease had fewer limitations of activity compared to those with underlying medical kidney disease. Except for low scores in the Disorders domain, children with underlying urological disease did not have significant impairments in any other domain compared to population based norms.

Assessing health care needs and clinical outcome with urological case complexity: a study using INTERMED.

Urinary tract symptoms and, particularly, urinary incontinence are often chronic and complex conditions that cause diagnosis, treatment, and management problems. In many cases, psychosocial factors contribute to the development of a chronic condition. The authors investigated whether INTERMED, an instrument for assessing case complexity and health care needs, was able to identify such complex cases, to estimate the amount of comorbidity, and to predict clinical outcome for 31 consecutive patients suffering from urinary tract symptoms. To assess clinical outcome, the authors used the American Urologic Association Symptom Score, the Brief Symptom Inventory, and the Hospital Anxiety and Depression Scale. On the basis of the patients' INTERMED scores, the authors distinguished between low-complexity patients (INTERMED score <21, N=25, 80.6%) and high-complexity patients (INTERMED score >or=21, N=6; 19.4%). Low-complexity patients had fewer depressive and anxiety symptoms, less distress, and better clinical outcome at their 3-month follow-up than high-complexity patients. The data confirmed the ability of the instrument to detect patients at risk of complex urinary tract symptoms and to predict clinical outcome.

Current approaches to assessing the quality of life in children and adolescents.

Urologists are well aware of the importance of the quality of life (QoL) in determining the success of their treatments. The public are increasingly aware of this aspect of medicine. The advent of fetal ultrasonography has made knowledge of QoL in long-term survivors of congenital anomalies essential in counselling about pregnancy termination. It is becoming mandatory that clinical trials involving adults include an assessment of QoL. For children, measuring QoL has been restricted to life-threatening conditions such as cancer or transplantation medicine. Measuring QoL is difficult in children and adolescents, and this is reflected in the few suitable instruments available. The development of sexuality contributes a further difficulty as many anxieties typical of those with genital anomalies may be common to all teenagers. Several instruments rely on the opinions of a proxy (parent or carer) but self-assessment by the child is preferable where possible. The need for child self-assessment is supported by finding little concordance between child and proxy assessments. While measuring QoL is challenging, we provide a substantial case for greater consideration of QoL in paediatric urology.

[Factors influencing the consequences of disease on urologic patients]. / Estudio de los factores que influyen sobre las consecuencias de la enfermedad en los pacientes urológicos.

OBJECTIVES: This study analyzed various factors that may affect social and personal consequences of disease in urological patients, as well as any possible relationships between these factors and disadvantageous situations they might produce. METHODS: A two-year retrospective study on patients of the University Hospital of Valladolid was conducted. The material used included a thorough analysis of case histories and questionnaires comprising all factors considered of interest by the most relevant Bodily Harm Valuers. The data obtained were processed and analyzed by the Statistics and Operations Research Departments of the University of Valladolid. RESULTS: In our study, sex and age were remarkably influential on sexual, economic and disablement damages. The different types of illnesses and the types of operations performed (non-surgical operations presented less consequences than surgical ones), as well as other factors such as distance from the patients' home to hospital, had a statistically significant correlation with the consequences of disease. CONCLUSIONS: We can detect certain disadvantageous situations through a previous study of the different variables that are collected in case histories, such as social, personal and economic circumstances. Thus, we can plan support programs in the future that will certainly reduce the consequences of disease.