RESUMEN
BACKGROUND: Persons with multiple sclerosis (pwMS) frequently suffer from bladder problems that are not identified and managed optimally, reducing quality of life and increasing risk of health consequences. OBJECTIVE: This study aimed to investigate associations between bladder problems and well-being of pwMS. METHODS: The study included 1872 pwMS from France, Germany, Italy, and the UK self-reporting on demographics, MS status, bladder problems and management, and well-being. Logistic regression analyses were performed to investigate associations with self-reported well-being. RESULTS: Population mean age was 51 years and 79 % were women. Among pwMS, 55 % reported bladder problems indicating overactive bladder (OAB), and 40 % reported self-experienced urinary retention. Self-management of bladder problems was reported by 32 %, 33 % were yet to have problem resolution, and 45 % reported a wish to receive bladder management help. Additionally, 35 % of pwMS reported that bladder problem onset preceded awareness of a link to MS. OAB, problem self-management, and urinary complications were significantly associated with lower well-being. CONCLUSION: Bladder problems affect pwMS across disease subtypes and many attempt self-management. Consequently, pwMS with bladder problems are more likely to experience lower well-being, suggesting an unmet need. Raising awareness of the link between bladder problems and well-being could benefit pwMS living with bladder problems.
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Esclerosis Múltiple , Humanos , Femenino , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/epidemiología , Persona de Mediana Edad , Masculino , Estudios Transversales , Adulto , Vejiga Urinaria Hiperactiva/etiología , Calidad de Vida , Automanejo , Anciano , Retención Urinaria/etiología , Europa (Continente)RESUMEN
BACKGROUND: One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. AIMS: To enumerate risk factors associated with constipation in this population. METHOD: A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation. RESULTS: Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender. CONCLUSIONS: People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.
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BACKGROUND: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. METHODS: A cross-sectional online survey developed with patient facing organisations was circulated to parents of children with intellectual disabilities and/or autism using an exponential and non-discriminatory snowballing method for recruitment. A smaller sample were purposively sampled for their in-depth experiences. RESULTS: Of 68 responses, people were open to discussing constipation and knowledgeable about risk factors. In the qualitative interviews, of 15 parents, they wanted to be treated as an expert in their child's care. They desired a service that was more responsive when in difficulty. While wanting more information about medication options, parents want a more holistic approach. CONCLUSIONS: Services need more emphasis on holistic management. Listening to parents and treating them as experts is important.
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Trastorno Autístico , Discapacidad Intelectual , Niño , Humanos , Trastorno Autístico/terapia , Discapacidad Intelectual/terapia , Estudios Transversales , Padres , Estreñimiento/terapiaRESUMEN
AIM: Low anterior resection syndrome (LARS) has a large impact on patients' quality of life. Several heterogeneous intervention pathways are suggested in the literature. The steps and timing of the different steps in the pathways are unclear. This systematic scoping review aims to map the range of intervention pathways for LARS after sphincter-saving rectal cancer surgery. METHODS: A search was undertaken on four databases (CINAHL, EMBASE, PubMed, and Web of Science). Any type of paper describing intervention pathways for patients with LARS following sphincter-saving surgery was included. Excluded were patients with a stoma, no full paper, no intervention pathway and not being written in English or Dutch. The review was registered with Open Science Framework (10.17605/OSF.IO/JB5H8). Narrative synthesis of the results was performed by charting and summarising key results. RESULTS: A total of 373 records were screened and 12 papers were included. There was a high variability among the intervention pathways, including which patients should be included. The number of pathway steps ranged from 2-6. Most intervention pathways were treatment-led. Intervention options ranged from conservative measures to a permanent stoma. Pathway flow was highly variable and sometimes not well described, with different or no timings provided for the start, progression, or end of the pathways. Three studies discussed the use of a nurse to coordinate the pathway. CONCLUSION: This systematic scoping review shows that despite similarities in treatment options there are variations in which treatments are included, when treatments should be instigated, and even which patients should be treated.
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Neoplasias del Recto , Humanos , Neoplasias del Recto/cirugía , Síndrome de Resección Anterior Baja , Complicaciones Posoperatorias , Calidad de Vida , Recto/cirugíaRESUMEN
BACKGROUND: Severe constipation can have a major impact on a child's quality of life and that of their families. Forming an antegrade continence enema (ACE) can be a transformational intervention to manage severe symptoms. However, operations can also have unpredictable negative consequences such as stomal stenosis or leaks from the ACE site. AIM: To investigate whether the choice of an ACE stopper can increase patient satisfaction and compliance. METHODS: A service evaluation with a standardised questionnaire was completed to assess quality of life and explore factors that have an impact on the preference for which ACE stopper was used. RESULTS: In total, 17 patients completed the evaluation of all three ACE stopper devices. At least 75% of the children improved their stooling pattern with an overall satisfaction rate of 8.5 out of 10. More patients preferred a flexible stopper but no one device was strongly preferred over the others. CONCLUSION: The study shows that an ACE has a positive impact on quality of life. With regards to the choice of ACE stopper, results show that different stoppers suit different individuals, highlighting that there is a place for a choice. This is useful information for healthcare providers who wish to improve compliance and reduce the risk of complications in this patient group.