RESUMEN
BACKGROUND: Clean intermittent self-catheterisation (CISC or ISC) is used by patients/carers to empty the bladder if needed. Sometimes the urethral lumen leading out of the bladder is blocked; sometimes, the bladder (detrusor) muscle itself or the autonomic motor nerves innervating the bladder are damaged, resulting in a failure of the detrusor muscle to work, leading to a failure of the bladder being able to empty adequately. Prior consensus as to the indications and timing of CISC has yet to be provided. This article aims to provide a multidisciplinary consensus view on this subject. CONCLUSION: It is evident that every patient needs to be considered individually, bearing in mind the symptoms and investigations to be considered. We emphasise the importance of considering the term Bladder Voiding Efficiency (BVE). One group of patients who might find CISC helpful are those with a neurological disorder; these include spinal injury patients, multiple sclerosis, Parkinson's, and a condition called cauda equina. Sometimes bladder problems are treated with anticholinergics, and others may be treated with Botox. These may cause the bladder not to empty at all, which is good for leaks but needs self-catheterisation to empty the bladder. In the past, hospitals used a permanent catheter called an 'indwelling' or a 'suprapubic' catheter. These can have side effects, including infections, stones, and pain. For CISC, disposable catheters are the best option for patients as they come in different sizes and styles to provide individualised care. In conclusion, we would like hospitals to consider each patient separately and not use a general 'one-size-fits-all' bladder function for these patients.
Asunto(s)
Cateterismo Uretral Intermitente , Vejiga Urinaria Neurogénica , Humanos , Cateterismo Urinario/efectos adversos , Cateterismo Uretral Intermitente/efectos adversos , Vejiga Urinaria Neurogénica/etiología , Vejiga Urinaria Neurogénica/terapia , Catéteres , Dolor/etiologíaRESUMEN
OBJECTIVES: Pain is a common and distressing symptom of pediatric cancer, as reported by both children and their parents. Increasingly, children with cancer are cared for as outpatients, yet little is known about how parents manage their cancer-related pain. The aim of the current study was to examine pain prevalence and characteristics, and the pharmacological, physical, and psychological pain management strategies used by parents to manage their child's cancer pain. MATERIALS AND METHODS: In total, 230 parents and caregivers (89% mothers) of children (mean age=8.93 y, SD=4.50) with cancer currently in treatment or who are survivors completed an online survey about their child's pain in the preceding month. RESULTS: Results indicated that children with cancer who were on active treatment and who were posttreatment experienced clinically significant levels of pain. Parents reported using more physical and psychological strategies than pharmacological strategies to manage their child's pain. The most frequently used physical/psychological strategy was distraction and acetaminophen was the most frequently administered pain medication. Parents' confidence in managing their child's pain was inversely associated with both how much pain they perceived their child had, and also whether they had given any pain medication. DISCUSSION: The results of this study suggest that despite parents' use of pain management strategies, management of cancer-related pain continues to be a problem for children during treatment and into survivorship.
Asunto(s)
Neoplasias/epidemiología , Dolor/epidemiología , Acetaminofén/uso terapéutico , Adulto , Analgésicos no Narcóticos/uso terapéutico , Cuidadores , Niño , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Manejo del Dolor , Percepción del Dolor , Padres , Prevalencia , Adulto JovenRESUMEN
BACKGROUND: Pain Squad is an evidence-based, freely available iOS app designed to assess pain in children with cancer. Once research-based technologies such as Pain Squad are validated, it is important to evaluate their performance in natural settings to optimize their real-world clinical use. OBJECTIVE: The objective of this study was to evaluate the implementation effectiveness of Pain Squad in a natural setting. METHODS: Parents of 149 children with cancer (aged 8-18 years) were contacted to invite their child to participate. Participating children downloaded Pain Squad on their own iOS devices from the Apple App Store and reported their pain using the app twice daily for 1 week. Participants then emailed their pain reports from the app to the research team and completed an online survey on their experiences. Key implementation outcomes included acceptability, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. RESULTS: Of the 149 parents contacted, 16 of their children agreed to participate. More than a third (6/16, 37.5%) of participating children returned their pain reports to the research team. Adherence to the pain assessments was 62.1% (mean 8.7/14 assessments). The 6 children who returned reports rated the app as highly feasible to download and use and rated their overall experience as acceptable. They also reported that they would be willing to sustain their Pain Squad use over several weeks and that they would recommend it to other children with cancer, which suggests that it may have potential for penetration. CONCLUSIONS: While Pain Squad was well received by the small number of children who completed the study, user uptake, engagement, and adherence were significant barriers to the implementation of Pain Squad in a natural setting. Implementation studies such as this highlight important challenges and opportunities for promoting the use and uptake of evidence-based technologies by the intended end-users.
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Seeking professional help for the symptoms of incontinence is extremely difficult for many people. Even patients consulting a hospital specialist for bowel problems have difficulties reporting faecal incontinence as one of their symptoms (Johanson and Lafferty, 1996).