Entwicklung eines erkrankungsspezifischen Fragebogens zur Erfassung der Lebensqualität bei Patienten mit arteriovenösen Malformationen im Kopf-Hals-Bereich

Arteriovenous malformation is the most serious form of congenital cardiovascular deformity. They’re more or less uncommon in human population. With only 2.8 % of all cardiovascular deformities they’re very rare. Typical symptoms are aesthetic deformation, bleedings, pain, neural losses, ulcerations and insufficient perfusion of subsequent tissue. These symptoms or conditions sometimes are so distinctive that the person concerned commits suicide. If nothing else this circumstance justifies the necessity to deal more intensively with the conditions of the patients. The quality of life of patients suffering from cardiovascular deformity is so far less researched. The aim of this paper was to analyze how the quality of life is affected by an artrio-venous malformation in the head-throat area. For this a questionnaire was developed, which main topic is to gather intrinsic problems of patients with vascular malformations in relation to their quality of life. The results of the statistical evaluation were then compared with the standardized questionnaire SF-36, which is already common in medical science. The questionnaire was developed from anonymous interviews of patients with cardiovascular malformation in an internet platform. With the help of these informations a Mind Map was created. This Mind Map made it possible to gather the elements which influences the quality of life into dimensions and can therefore be seen as the basic of the questionnaire in reference to the phrasing of the items. The dimensions or pillars of the questionnaire are ‘self’, ‘physical concomitant effects’, ‘fears’, ‘organization of daily life’ , ‘therapy and therapist’ and ‘secondary gain’. The questionnaire was then sent to 53 patients listed in the data base of the uni-versity hospital of Marburg, department of otolaryngology, who display arteriovenous malformation in the head-throat area. The response rate of the questionnaire ‘SF-36’ was 42% that of the ‘questionnaire about the specific quality of life of patients with vascular malformation’ was 43%. All questions of the specific questionnaire were evaluated by a large statistical analysis, which showed that the majority of the items is to be classified as easy / light psychometric. The analysis of the reliability and selectivity by estimating of the Cronbachs-α-coefficient allowed a general statement about the quality of the chart or dimension by the questions included. The Analysis showed the need to reduce the former seven pillars of quality of life of the newly developed questionnaire (Self, physical concomitant effects, fears, organization, therapy, therapist, morbid gain) to five and sometimes rephrase their names (self-worth, physical concomitants, fears, treatment, organization, social networks and daily life). The dimension ‘morbid gain’ showed no results. In addition some items had to be erased, rephrased or added to other dimensions. The statistical evaluation of the SF-36 showed that the quality of life of patients who suffer from arteriovenous malformation is in all dimensions less than that of other people. The correlation analyses displayed that all the dimensions of the SF-36, which are seen as the pillars of quality of life, are also represented in the newly developed, specific questionnaire. For this one item of each chart in the newly developed questionnaire was correlated with one of the eight pillars of the SF-36. This demonstrated a clear relation on a mostly 1 percent level of significance. The specific questionnaire about arteriovenous malformations so indicates the quality of life. Any gathered information was incorporated into the questionnaire. It now serves as a basis for further development and should be tested on a larger number of patients.