儿童炎症性肠病病原菌分析

摘要:目的　分析某院炎症性肠病（Inflammatory Bbowel Disease,IBD）儿童患者粪便中的菌群分布,并与正常对照进行比较,探讨儿童IBD的发生与肠道菌群的关系。方法　选取2011年5月-2014年8月在该院确诊的IBD患儿共101例作为调查对象;同时选取该院同一时间段进行健康体检的健康儿童50例作为对照。收集调查样本新鲜粪便,通过荧光定量PCR检测肠道优势菌群的数量情况,比较溃疡性结肠炎（UC）患儿、克罗恩病（CD）患儿与正常对照组各优势菌种的数量差异。结果　根据菌群定量检测结果发现,拟杆菌属在3组人群中数量差异无统计学意义（F＝3.148,P＞0.05）,UC组及CD组双歧杆菌、缠绕杆菌、乳酸菌、脆弱杆菌、梭状芽胞杆菌比对照组显著减少（F值分别为15.331、17.453、21.479、18.521,27.658,P值均＜0.05）,UC组及CD组肠球菌比正常对照组明显增多（F＝23.457,P＜0.05）。结论　儿童肠道优势菌群与IBD的发生具有关联性,但优势菌群分布与IBD发生的因果关系还需要今后进行进一步的研究证实。     

112例炎症性肠病患者的营养风险筛查

目的 筛查炎症性肠病(IBD)患者营养风险的发生情况.方法 采用营养风险筛查2002(NRS2002)对在北京协和医院就诊的112例IBD患者进行营养风险筛查.体重指数(BMI)采用中国标准,以小于18.5 kg/m~2结合临床判定为营养不良,直接记录为3分.采用True-Love标准将溃疡性结肠炎(UC)分为轻型、中型和重型.采用Harvey和Bradshaw标准将克罗恩病(CD)分为缓解期(≤4分)、中度活动期(4-8分)和重度活动期(≥9分).结果 112例IBD患者中,UC为70例,CD为42例,总营养风险发生率为40.2%.CD组患者营养风险发生率为52.4%,明显高于UC组的32.9%(P<0.05).营养风险发生率与疾病严重程度相关.重型IBD患者营养不良(不足)发生率显著低于营养风险发生率(P=0.003).结论 IBD患者营养风险发生率较高,NRS2002有助于发现IBD患者的营养风险.     

The role of complementary medicine in European and Asian patients with inflammatory bowel disease

Three hundred and eighty-two patients with known inflammatory bowel disease (IBD) (190 European and 192 Asian) and 190 with coeliac disease were sent a previously validated questionnaire to investigate patients' use of alternative medicine and their views on its effectiveness. Details sought included whether they had ever consulted an alternative practitioner, whether they had followed a course of treatment and its clinical effects. Information about where patients had heard about such alternative practitioners and whether they were told to discontinue their current allopathic medication was also sought. Results were analysed after three consecutive mailings, including one in Gujurati to Asian patients. A randomly selected group was re-interviewed four months later. To validate the study alternative medicine practitioners were also interviewed to investigate what percentage of their attendees have IBD and how many of those clients were Asians.One hundred and fifty-eight questionnaires were returned from European patients with IBD (response rate = 83%), 145 from patients with coeliac disease (response rate = 76%) but only 81 Asian patients with IBD (response rate = 42%). Forty-seven European and Asian patients with inflammatory bowel disease sought advice or treatment from an alternative practitioner, compared with only 11 with coeliac disease (X² = 11.64, df = 12, P < 0.003). There was no significant difference in consultation rates between Asian and European patients with IBD (Yates corrected X² = 0.78, ns). The most common practitioners consulted by all groups were homeopaths (n = 23) and herbalists (n = 27) but 20 patients consulted more than one practitioner at a time. Patients with coeliac disease and European patients with IBD had consulted osteopaths (n = 6) and reflexologists (n = 7). Ten patients with IBD had also attended a spiritualist and five Asian patients a hakim. Common sources of information about alternative remedies included friends and relatives (n = 13), the media (n = 11), word of mouth (n = 11) and family practitioners (n = 6). Most patients were advised to continue their current medications, although two had been told to stop and 10 advised to reduce the dose of their allopathic medications. Twenty alternative medicine practitioners stated that overall between 2–5% of their attendees have IBD with 10% of those clients being Asian. Asians preferred to consult Asian practitioners rather than European practitioners. There was no clear consensus as to whether complementary therapies were felt beneficial, although many patients with IBD believed them to be helpful.     

The meaning of parental illness to children: the case of inflammatory bowel disease

BACKGROUND: Research on the impact of parental illness on children is sparse, and it remains unclear what kind of support, if any, families would value. This paper presents findings from the first investigation to explore the experiences of young people who have a parent with inflammatory bowel disease (IBD). DESIGN AND METHODS: This qualitative study involved interviews with 23 young people, aged between six and 20 years, who have a parent with IBD. A range of non-verbal techniques was used to facilitate interviews with young children. Data were analysed using the framework approach. RESULTS: Participants varied in their understanding and perception of their parent's condition and the extent to which they discussed it with family and friends. Some reported being unaffected by their parent's illness. The main negative effects on everyday life were restrictions on social activities, parents being unable to do housework, children having to be well-behaved and parents becoming withdrawn or irritable. Experiences could lead to feelings of sadness, worry, anger and guilt. The few who reported positive effects described spending time with the parent while ill, being allowed to be more independent and being close as a family. Relatives, friends, neighbours, service providers and young people all played a role in helping to manage the situation, and most participants felt that their family did not need additional support. However, some young people would value advice and information regarding the condition and opportunities to meet others in a similar situation. CONCLUSION: IBD is a highly variable condition, with substantial differences in the extent to which it impinges on the lives of family members. In addition to supporting patients, health professionals have an important role to play in offering advice and information to others affected by the illness, including children.     

A population-based study of familial clustering of inflammatory bowel disease in Florence

In the frame of a population-based epidemiological study inthe metropolitan area of Florence in a 15 year period (1978–1992)all prevalent patients affected with ulcerative colitis (UC)or Crohn's disease (CD) (alive and resident in the area at theend of the study) were investigated in order to identify familialclustering. Only 45 patients (5.2%) reported at least 1 relativewith a diagnosis of inflammatory bowel disease (IBD). Amongthese, 25 patients reported a first-degree relative affectedwith IBD (2.9%). All the 28 families were contacted and detailedpersonal interviews were carried out in order to collect familytrees. The affected relatives living outside the study areawere also identified and their IBD diagnoses were verified.Fifteen families included only affected members with a diagnosisof UC; 5 had only CD, while 8 families had members affectedwith both forms. Two large families had 4 affected members and2 other families had 3. Overall 9 parent-child affected pairswere identified (1 out of every 3 families). The high concordancewithin families for the type of disease (p=0.015) suggests thatthe disease susceptibility is specific. The authors discussthese findings and a possible interpretation of the low proportionof familial cases in this area.     

112例炎症性肠病患者的营养风险筛查

Objective To assess the nutritional risk of patients with inflammatory bowel disease (IBD).Methods The nutritional status of 112 IBD patients from PUMC Hospital were evaluated by Nutritional Risk Screening 2002 (NRS 2002).Using Chinese standard,a body mass index (BMI) that was lowered than 18.5 kg/m~2 according to clinical material was regarded as malnutrition,and the score was recorded as 3.The se-verity of ulcerative colitis (UC) was evaluated using True-Love criteria as mild,moderate,and severe.Crohn's disease (CD) was evaluated using Harvey-Bradshaw Index as in remission stage (≤4),moderately active stage (4-8),and severely actively stage (≥9).Results All these 112 patients,including 70 UC cases and 42 CD cases,were evaluated by NRS2002.Forty-five patients (40.2%) were judged as at the risk of malnutrition.The incidence of malnutrition was significantly higher in CD patients than in UC patients (52.4% vs.32.9%,P<0.05).It was also significantly correlated with the severity of disease.In patients with severe IBD,the rate of mal-nutrition evaluated by BMI according to clinical material was significantly lower than the rate of nutritional risk.Con-clusions The risk of malnutrition is high in IBD patients.NRS 2002 can be used for nutritional risk screening.     

Stigma,deviance and morality in young adults' accounts of inflammatory bowel disease

For young adults with inflammatory bowel disease (IBD), perceived stigma has been found to be a salient concern. Drawing on interviews with individuals with IBD aged 18–29 (n = 16), this article uses rhetorical discourse analysis to explore how stigma is discursively constructed by young adults, with a focus on the moral underpinnings of the participants' talk. Their representations showed both felt stigma and enacted stigma; principally related to the perceived taboo surrounding the symptoms of their condition, which often led to the non‐disclosure or concealment of the condition. The different ways in which stigma is manifested in the accounts present a challenge to recent arguments questioning the relevance of this concept in chronic illness research, though it was found that it is not adequate to look at stigma alone and, given the unstable nature of IBD, negotiating stigma in relation to possible charges of deviance is a pertinent issue for these young adults. For instance, non‐disclosure because of shame could result in individuals experiencing blame. Accounts were constructed through a range of discursive strategies, allowing the participants to present themselves in morally appropriate ways throughout. Suggestions are made about future directions in addressing stigma and deviance in relation to this cohort.     

Role of diet and nutrition in inflammatory bowel disease

Inflammatory bowel diseases (IBDs) are closely linked to nutrition. The latest research indicates that diet and nutrition are significantly involved in the etiopathogenesis of the disease, although their specific role throughout its clinical course still remains unclear. This study reviewed how diet and nutrition are associated with IBD development and management. Even though specific diets have been shown to bring about positive outcomes, there is currently no scientific consensus regarding an appropriate diet that would benefit all IBD patients. We suggest that individualized dietary recommendations are of the greatest importance and that diets should be planned to provide individual IBD patients with specific nutrient requirements while keeping all the clinical aspects of the patients in mind. Further research is clearly necessary to investigate nutritional factors involved in IBD development and, especially, to evaluate the applications of the diets during the course of the disease.     

Paediatric parenting stress in inflammatory bowel disease: application of the Pediatric Inventory for Parents

Background The psychosocial functioning of caregivers of adolescents managing inflammatory bowel disease (IBD) has been understudied; yet, poor caregiver functioning can place youth at risk for compromised disease management. The current study addressed this limitation by examining a sample of caregivers of adolescents with IBD. Study aims included (1) documenting rates of paediatric parenting stress; (2) identifying associated sociodemographic predictors of parenting stress; and (3) comparing previously published rates of parenting stress to those within other paediatric chronic conditions, including cancer, type 1 diabetes, obesity, sickle cell disease, bladder exstrophy. Methods Caregivers of adolescents with an IBD diagnosis (M_age= 15.4 ± 1.4, 44.4% female, 88.7% Caucasian) and receiving tertiary care within a gastroenterology clinic (n= 62) completed the Pediatric Inventory for Parents (PIP) as a measure of paediatric parenting stress with frequency and difficulty as PIP subscales. Paediatric gastroenterologists provided disease severity assessments. Results Adolescents with IBD were experiencing relatively mild disease activity. Bivariate correlations revealed that PIP‐difficulty was positively associated with Crohn's disease severity (r= 0.38, P < 0.01). Caregiver age was negatively associated with the frequency of parenting stress total (r=?0.25, P= 0.05) and communication scores (r=?0.25, P < 0.05). The frequency and difficulty of parenting stressors within the IBD sample were similar to rates within type 1 diabetes, but were significantly lower than rates identified in other paediatric chronic conditions. Conclusions Caregivers of adolescents with IBD seem to experience low rates of parenting stress when their adolescents are receiving outpatient care and during phases of IBD relative inactivity. The sociodemographic characteristics of IBD families (i.e. primarily Caucasian, well‐educated and higher socio‐economic status) likely encourage greater access to financial and psychosocial resources, which may aid in promoting more optimal stress management.     

Familial aggregation of inflammatory bowel disease in a Mediterranean area

To evaluate familial aggregation of inflammatory bowel disease (IBD) in the Mediterranean area and to estimate the disease risk in first degree relatives. 427 patients with IBD were consecutively interviewed in order to obtain a complete pedigree of first degree relatives. Sufficient information was obtained in 98% of 2,685 family members. The prevalence ratio of IBD in family members was estimated and compared to the prevalence ratio of IBD in general population; the ratio was then standardized by age since the prevalence of the disease is age-dependent. The lifetime risk was assessed by the Kaplan Meier method. Thirty index cases (7%) had at least one affected first degree relative. As compared with the general population, first degree relatives of the 427 patients with IBD had a 4.38-fold increase in the age corrected risk of having the same disease. The Kaplan-Meier curve showed a higher risk at 25 years of age for offsprings (3%) than for parents (1%) and siblings (1%) whereas the crude ratio showed a higher risk for siblings (1.9%) compared to parents (0.8%) and offsprings (1%). In the Mediterranean area, the familial prevalence of IBD is higher than in the general population and comparable to North European rates.Abbreviations CD Crohn's disease - IBD inflammatory bowel disease - UC ulcerative colitis