Laxative use in adults with intellectual disabilities: development of prescribing guidelines.

BACKGROUND: Constipation is overrepresented in people with intellectual disabilities. Around 40% of people with intellectual disabilities who died prematurely were prescribed laxatives. A quarter of people with intellectual disabilities are said to be on laxatives. There are concerns that prescribing is not always effective and appropriate. There are currently no prescribing guidelines specific to this population. AIMS: To develop guidelines to support clinicians with their decision-making when prescribing laxatives to people with intellectual disabilities. METHOD: A modified Delphi methodology, the RAND/UCLA Appropriateness Method, was used. Step 1 comprised development of a bespoke six-item, open-ended questionnaire from background literature and its external validation. Relevant stakeholders, including a range of clinical experts and experts by experience covering the full range of intellectual disability and constipation, were invited to participate in an expert panel. Panel members completed the questionnaire. Responses were divided into 'negative consensus' and 'positive consensus'. Members were then invited to two panel meetings, 2 weeks apart, held virtually over Microsoft Teams, to build consensus. The expert-by-experience group were included in a separate face-to-face meeting. RESULTS: A total of 20 people (ten professional experts and ten experts by experience, of whom seven had intellectual disability) took part. There were five main areas of discussion to reach a consensus i.e. importance of diagnosis, the role of prescribing, practicalities of medication administration, importance of reviewing and monitoring, and communication. CONCLUSIONS: Laxative prescribing guidelines were developed by synthesising the knowledge of an expert panel including people with intellectual disabilities with the existing evidence base, to improve patient care.

Chronic constipation in people with intellectual disabilities in the community: cross-sectional study.

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.

Identifying the health care-initiated and self-initiated interventions used by women for the management of rectal emptying difficulty secondary to obstructive defecation: a scoping review protocol.

OBJECTIVE: This scoping review aims to identify interventions used by women for the management of rectal emptying difficulty secondary to obstructive defecation. INTRODUCTION: Rectal emptying difficulty is typically a symptom of obstructive defecation syndrome. Even though a range of interventions are already available for this condition, this review is necessary to increase understanding of what interventions women find useful and are acceptable for them. This depth of understanding will facilitate the development of a specific care pathway to support women living with rectal emptying difficulty secondary to obstructive defecation syndrome. INCLUSION CRITERIA: This review will consider studies that include adult women (over 18 years of age) living in the community who have experienced difficulty with rectal emptying secondary to obstructive defecation and who have not had surgical intervention. Exclusion criteria include prolapse surgery and surgical techniques, oral laxatives, vaginal pessaries, cognitive impairment, pregnancy, and those residing in care homes. METHODS: The databases to be searched include MEDLINE, Embase, CINAHL, PsycINFO, Emcare, AMED, Web of Science, Scopus, PROSPERO, Open Grey, ClinicalTrials.gov, International Clinical Trials Registry Platform Search Portal, UK Clinical Trials Gateway, International Standard Randomised Controlled Trial Number Registry, JBI Evidence Synthesis, Epistemonikos, Cochrane Library, and gray literature. Studies conducted in English from any time period will be considered for inclusion. The titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review.

An International Continence Society (ICS) report on the terminology for single-use body worn absorbent incontinence products.

AIMS: In 2016, the International Continence Society (ICS) Standardization Steering Committee appointed a working group to address the confusing plethora of synonyms currently used to describe single-use body worn absorbent incontinence products by recommending preferred terminology. METHODS: An online questionnaire was posted in 2016/17 inviting input from stakeholders internationally. The data were analyzed and conclusions progressively refined through working group discussions, an open meeting at the 2017 annual ICS conference, and a review of further iterations-including from the parent ICS Standardization Committee-until consensus was reached. Partway in, the International Organization for Standardization started a project with similar scope and the two organizations liaised to harmonize their conclusions while respecting each other's processes. RESULTS: A hundred people from 18 countries responded to the questionnaire. About a third (32.2%) of those declaring their nationality were from the UK and a further third (34.5%) from other English-speaking countries. Two-thirds (67.8%) lived in Europe; around a quarter (23%) in North America; and 9.2% in Australasia. Seven main design categories of products were identified and, while clear consensus was readily achieved in naming some of them, others required more work to determine the best term among multiple contenders. CONCLUSIONS: The working group concluded that the seven product design categories should be called: (a) pads; (b) unbacked pads; (c) male pads; (d) male pouches; (e) pull-on pads (protective underwear); (f) all-in-ones (wrap-around pads, adult briefs); and (g) belted pads (belted products), in which the bracketed terms are judged acceptable (though not preferred) alternatives.

Women's experiences of managing digitation: do we ask enough in primary care?

The aim of this paper was to consider the available evidence for the current management of pelvic organ prolapse, which is a common presentation in primary care. However, not all women will present, only presenting when symptoms become bothersome. Particular attention was paid to understanding the problem of rectocele and its influence on obstructive defaecation symptoms. The burden of rectocele and its consequences are not truly known. Furthermore, healthcare professionals may not always enquire about bowel symptoms and patients may not disclose them. Complex emotions around coping and managing stress add to the challenges with seeking healthcare. Therefore, the impact on the lived experience of women who have difficulty with rectal emptying can be significant. The review identified a dearth of knowledge about women living with the problem of obstructive defaecation resulting in the use of digitation. Improving the management of digitation, an under-reported problem, is necessary to improve the quality of life for women. Primary care needs to increase access to conservative measures for women struggling with bothersome symptoms, such as constipation, the need to digitate or anxiety.

International Continence Society Good Urodynamic Practices and Terms 2016: Urodynamics, uroflowmetry, cystometry, and pressure-flow study.

AIMS: The working group initiated by the ICS Standardisation Steering Committee has updated the International Continence Society Standard "Good Urodynamic Practice" published in 2002. METHODS: On the basis of the manuscript: "ICS standard to develop evidence-based standards," a new ICS Standard was developed in the period from December 2013 to December 2015. In July, a draft was posted on the ICS website for membership comments and discussed at the ICS 2015 annual meeting. The input of ICS membership was included in the final draft before ICS approval and subsequent peer review (for this journal). RESULTS: This evidence-based ICS-GUP2016 has newly or more precisely defined more than 30 terms and provides standards for the practice, quality control, interpretation, and reporting of urodynamics; cystometry and pressure-flow analysis. Furthermore, the working group has included recommendations for pre-testing information and for patient information and preparation. On the basis of earlier ICS standardisations and updating according to available evidence, the practice of uroflowmetry, cystometry, and pressure-flow studies are further detailed. CONCLUSION: ICS-GUP2016 updates and adds on to ICS-GUP2002 to improve urodynamic testing and reporting both for individual care and scientific purposes.

Reversing deterioration in continence services.

Despite the growing prevalence of incontinence and the recognition that it is a significant factor in admissions to hospitals and residential care, continence care is receiving less funding. This article compares the findings of a continence care survey undertaken in 2007 with one published in 2013. The survey shows there has been a reduction in numbers of specialist continence staff, particularly senior posts, an increased number of patients seeking help, a decrease in funding, fewer continence products being supplied and growing waiting lists.

Nocturia and older people.

Nocturia has been defined as one or more voids [of urine] at night, each of which is preceded and followed by sleep (Abrams et al, 2002; van Kerrebroeck et al, 2002). It is a condition that can influence health status and quality of life; for example, daytime sleepiness can occur as a result of loss of sleep at night, and the resultant loss of energy can render many older people prone to accidents, such as falls (Box 1).

Management of voiding difficulties associated with pregnancy.

The purpose of this paper is to share the lessons learnt from a clinical experience that involved a woman who developed difficulties passing urine after the birth of her second child. Maximising learning is a crucial aspect of health professionals' work in an increasingly litigious society where the NHS regularly receives negative publicity and staff fear prosecution (Department of Health, 2001).