Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK

Objective Symptoms and clinical course during inflammatory bowel disease (IBD) vary among individuals. Personalised care is therefore essential to effective management, delivered by a strong patient-centred multidisciplinary team, working within a well-designed service. This study aimed to fully rewrite the UK Standards for the healthcare of adults and children with IBD, and to develop an IBD Service Benchmarking Tool to support current and future personalised care models. Design Led by IBD UK, a national multidisciplinary alliance of patients and nominated representatives from all major stakeholders in IBD care, Standards requirements were defined by survey data collated from 689 patients and 151 healthcare professionals. Standards were drafted and refined over three rounds of modified electronic-Delphi. Results Consensus was achieved for 59 Standards covering seven clinical domains; (1) design and delivery of the multidisciplinary IBD service; (2) prediagnostic referral pathways, protocols and timeframes; (3) holistic care of the newly diagnosed patient; (4) flare management to support patient empowerment, self-management and access to specialists where required; (5) surgery including appropriate expertise, preoperative information, psychological support and postoperative care; (6) inpatient medical care delivery (7) and ongoing long-term care in the outpatient department and primary care setting including shared care. Using these patient-centred Standards and informed by the IBD Quality Improvement Project (IBDQIP), this paper presents a national benchmarking framework. Conclusions The Standards and Benchmarking Tool provide a framework for healthcare providers and patients to rate the quality of their service. This will recognise excellent care, and promote quality improvement, audit and service development in IBD

The influence of first generation fertility and economic status on second generation fertility

This paper examines the impact of parental economic status and family size on the actual and expected fertility of adult children using longitudinal data from two generations of families participating in the Panel Study of Income Dynamics. There was a modest positive relationship between first generation family size and second generation fertility. More importantly, the ideal family size of the parental family was more closely related to fertility behavior and plans in the second generation than was actual parental family size. In addition, the data revealed the hypothesized negative correlation between parental financial status and second generation fertility behavior and plans. Several mechanisms which could produce the correlation between parental characteristics and the fertility of their children are explored.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/43511/1/11111_2005_Article_BF01253070.pd

Medication non-adherence in ulcerative colitis - strategies to improve adherence with mesalazine and other maintenance therapies

Background  Significant number of patients with ulcerative colitis (UC) fail to comply with treatment. Aims  To review issues surrounding medication non-adherence in inflammatory bowel disease (IBD), including the clinical and health service implications in the UK, and discuss strategies for optimizing medication adherence. Methods  Articles cited were identified via a PubMed search, utilizing the words IBD, adherence, compliance, medication and UC. Results  Medication non-adherence is multifactorial involving factors other than dosing frequency. Male gender (OR: 2.06), new patient status (OR: 2.14), work and travel pressures (OR: 4.9) and shorter disease duration (OR: 2.1), among others are proven predictors of non-adherence in UC. These indicators can identify ‘at-risk’ patients and allow an individually tailored treatment approach to be introduced that optimizes medication adherence. A collaborative relationship between physician and patient is important; several strategies for improving adherence have been proven effective including open dialogue that takes into consideration the patient’s health beliefs and concerns, providing educational (e.g. verbal/written information, self-management programmes) and behavioural interventions (e.g. calendar blister packs, cues/reminders). Conclusions  Educational and behavioural interventions tailored to individual patients can optimize medication adherence. Additional studies combining educational and behavioural interventions may provide further strategies for improving medication adherence rates in UC

Home parenteral nutrition: An international benchmarking exercise

Background & aims: Information relating to the provision of HPN in New Zealand and Scotland has been published. 1 This paper expands that benchmarking exercise to examine the organisation, prevalence and referral pathways across several countries of the world. Methods: The ESPEN Home Artificial Nutrition Chronic Intestinal Failure working group agreed a pro forma and circulated a network of international colleagues. Results: Responses were received from 16 countries treating an estimated 9200 patients. Period prevalence figures ranged from 3.25 to 66 patients per million of the population. Eight countries (53%) had published HPN guidelines; of the 7 who did not, 4 (27%) had adopted guidelines such as ESPEN. Eleven (73%) had an HPN educational programme in place. The most common underlying disease for HPN in adults were ischaemia, Crohns' disease, motility disorders and cancer; and in children enteropathy, motility and inflammatory bowel disease (unknown in 4 countries). Conclusions: There is a wide range in HPN prevalence figures and the existence of organised care varies across the countries studied. Most countries either had developed their own clinical guidelines or standards or had adopted an international society guideline to improve patient care. It is recognised that several countries have under reported the HPN prevalence as registries are not fully available or used. This comparative data is interesting to enable the planning of equitable care. © 2012 European Society for Clinical Nutrition and Metabolism.SCOPUS: ar.jinfo:eu-repo/semantics/publishe