Materials and Methods

This investigation was approved by an independent ethics committee at the Charité - University Medicine in Berlin. The study was conducted between the autumn of 2004 and spring 2005. It was a postal survey addressed to member parents involving a standardised questionnaire (total 23 pages). Parents were included if their children were between 3 and 17 years of age. The intention was to collect epidemiological data regarding type of ARM, type of post-surgical therapy, degree of contentment, persisting needs, psychiatric screening, quality of life (QOL), faecal continence and family impact, using descriptive statistics.

The final sample consisted of 104 (28%) polled families who are members of the parent network from all over Germany. Of course this is a selected sample of very committed parents, with one in three participating couples having an academic degree.

Evaluation of classification, aftercare methods and degree of contentment was carried out in collaboration with the Italian association for ARM (Associazi-one Italiana per le Malformazioni AnoRettali). The results of the Italian questionnaire were based on a sample size of 209 (with no age limits), which is about double our sample [1].

QOL and continence were measured using a paedi-atric disease-specific instrument, the Hirschsprung's disease/ARM quality-of-life instrument (HAQL) developed by Hanneman et al. [8]. We translated the HAQL into German according to the guidelines. The HAQL and a five-item index described by Ditesheim and Templeton [5] are the only QOL scores assessing faecal incontinence in children [29]. The strong relationship between incontinence and QOL was demonstrated by Rothbarth et al. [24] on two other scales in 32 adult patients. Hanneman et al. [8] evaluated the HAQL on 534 patients aged 6-17 years. Whereas we only used the parent version of the HAQL (initially only for families with 6- to 11-year-olds) consisting of 46 items with 12 additional items for children with stomas, this questionnaire covered the following domains: laxative and constipating diet (each two items), diarrhoea (two items), constipation (one item), faecal continence (eight items), urinary continence (four items), social functioning (three items), emotional functioning (six items), body image (two items) and physical symptoms (nine items). We transformed the answers into two of three qualitative outcome domains according to the Krickenbeck agreement: soiling and constipation (see Table 37.3).

To evaluate the impact on the family with a chronically ill child, the Anglo-American impact-on-family scale (IFS) [27] was originally developed with 33 items ordered in 4 levels. In 2001, Ravens-Sieberer et al. [22] validated a German version of this self-report scale on 273 families with a child affected by different chronic conditions, such as epilepsy, diabetes and neurological disabilities from mild psychomotor problems to severe mental retardation. We used this so-called FaBel (Familien-Belastung-Fragebogen) to estimate the impact of the specific disease (ARM) on the family in several areas. We stratified the score for each scale into four categories: "better" if the result was less then one standard deviation (SD) below the mean of the reference population (< mean - 1xSD) and "worse" or "much worse" if the score was raised more than one or two ("much worse") standard deviations (> mean + 1xSD or > mean + 2xSD, respectively), respectively, above the reference population of chronic disabled children. The results of our family study can thus be compared with a reference population (i.e. families with different chronic conditions). Five scales could be separated: financial burden and job problems (4 items), daily social impact, partnership, leisure time (15 items), personal strain, worries regarding the future (5 items), coping problems of the parents (3 items) and concerns regarding siblings (6 items). The first four scales built up the total impact score (27 items). This questionnaire is available in four languages, English, German, Spanish and Italian.

Constipation Prescription

Constipation Prescription

Did you ever think feeling angry and irritable could be a symptom of constipation? A horrible fullness and pressing sharp pains against the bladders can’t help but affect your mood. Sometimes you just want everyone to leave you alone and sleep to escape the pain. It is virtually impossible to be constipated and keep a sunny disposition. Follow the steps in this guide to alleviate constipation and lead a happier healthy life.

Get My Free Ebook

Post a comment