Development of the Diaphragmatic Paralysis Questionnaire (DPQ)

Abstract

Background: Diaphragmatic paralysis is a rare disorder and has multidisciplinary underlying conditions. Therefore, treatment options are sparse and even though there is a lack of information about the long-term effects, the number of surgical procedures rises continuously. Therefore, validations of the treatment options are urgently needed to avoid unnecessary procedures.

Aims: The current study was aimed at developing the Diaphragmatic Paralysis Questionnaire (DPQ) as a specific tool to assess HRQL in patients with diaphragmatic paralysis.

Methods: Potential topics for item development were listed as agreed by an expert panel of physician regularly diagnosing and treating patients with diaphragmatic paralysis.

Topics were rated by patients who were untreated (N = 11) or who had already received diaphragmatic plication (N = 9). Items were built based on the relevant topics as rated by the patients. Items were rated on a 5-point-Likert-Scale ranging from “completely untrue” (1 point) to “always true” (5 points). The origin questionnaire was developed in German and was finally translated and transculturally adapted into different languages.

Results: 20 patients were assessed for eligibility and all patients completed the protocol and were included in the final analysis. Out of 43 topics 21 topics were finally rated >/=0 and were subject for item building. Therefore, 51.2% of the items were not included into the final DPQ.

Conclusion: The DPQ is a novel specific tool for the assessment of HRQL in patients suffering from diaphragm paralysis. The final version was professionally translated and will be available free of charge for scientific purposes.