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Multistep translation and cultural adaptation of the Penn acoustic neuroma quality-of-life scale for German-speaking patients

  • Original Article - Brain Tumors
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Abstract

Background

Monitoring the health-related quality of life (HRQOL) for patients with vestibular schwannoma (VS) has garnered increasing interest. In German-speaking countries, there is no disease-specific questionnaire available similar to the “Penn Acoustic Neuroma Quality-of-life Scale” (PANQOL).

Method

We translated the PANQOL for German-speaking patients based on a multistep protocol that included not only a forward-backward translation but also linguistic and sociocultural adaptations. The process consists of translation, synthesis, back translation, review by an expert committee, administration of the prefinal version to our patients, submission and appraisal of all written documents by our research team. The required multidisciplinary team for translation comprised head and neck surgeons, language professionals (German and English), a professional translator, and bilingual participants. A total of 123 patients with VS underwent microsurgical procedures via different approaches at our clinic between January 2007 and January 2017. Among these, 72 patients who underwent the translabyrinthine approach participated in the testing of the German-translated PANQOL.

Result

The first German version of the PANQOL questionnaire was created by a multistep translation process. The responses indicate that the questionnaire is simple to administer and applicable to our patients.

Conclusion

The use of a multistep process to translate quality-of-life questionnaires is complex and time-consuming. However, this process was performed properly and resulted in a version of the PANQOL for assessing the quality of life of German-speaking patients with VS.

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Acknowledgements

Thanks to our additional specialists in the expert committee:

Mrs. Alexandra Mulcahy, Mr. Michael Jack (MD), Mrs. Anja Eger, Mrs. Hanna Laritz, and Mrs. Vera Eckstein.

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Authors and Affiliations

  1. Department of Otorhinolaryngology, Duesseldorf University Hospital, Duesseldorf, Germany

    Julia Kristin, Marcel Fabian Glaas, Igor Stenin, Angelika Albrecht, Thomas Klenzner, Jörg Schipper & Katrin Eysel-Gosepath

Authors
  1. Julia Kristin
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  2. Marcel Fabian Glaas
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  3. Igor Stenin
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  4. Angelika Albrecht
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  5. Thomas Klenzner
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  6. Jörg Schipper
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  7. Katrin Eysel-Gosepath
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Corresponding author

Correspondence to Julia Kristin.

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Comments

The authors present their translation into German of a questionnaire on health-related quality of life (HRQOL), which seems to be popular in a otorhinolarygological (ORL) context, for patients with vestibular schwannoma (VS). It seems that this questionnaire is mostly used for a pre- and postoperative assessment of patients with VS who come to an ORL department. Unfortunately, from a neurosurgical point of view, there are fundamental problems with this questionnaire no matter whether it is used in a pre- or postoperative context.

The vast majority of the questions (80%) deal with subjective criteria if one includes dizziness, while only 20% of the questions pertain to clear-cut neurological criteria based on cranial nerve deficits. Questions pertaining to symptoms of anxiety in general account for 54%. Dizziness alone accounts for 23% of the questions, while only 8% of the questions deal with such a serious cranial nerve deficit as facial nerve palsy. This is a serious imbalance within HRQOL from clinically important towards clinically less important information.

How can clinicians extract useful information from such a biased questionnaire? Even worse, how can a clinician consult a patient reasonably if the major part of the questionnaire’s information is based on the patient’s general anxiety or annoying rather than important symptoms?

Like in any decision-making support, score, or grading, the criteria on which a questionnaire is based need to be selected, weighted, and grouped in a clinically meaningful way.

In my view, HRQOL is not useful for decision-making in a preoperative neurosurgical context. On the contrary, it may even lead to bad decisions based on biased information.

Neurosurgeons should advise their patients with VS based on sound clinical knowledge of the various prospects that their patients face including the various pros and cons: wait-and-scan, radiosurgery, or microsurgery. If the patient opts for wait-and-scan, he or she should be aware that their hearing might deteriorate even in the absence of tumor growth and that tumor growth is not linear and therefore not necessarily easily predictable. If the patient opts for radiosurgery, he or she should be aware that hearing and facial nerve preservation is best compared to invasive measures. If the patient opts for microsurgery, he or she should be aware that hearing and facial nerve preservation may be best if partial tumor removal is chosen rather than total tumor resection to be followed by radiosurgery for potential tumor remnants. In addition, the patient should be informed that annoying symptoms such as tinnitus and dizziness are not necessarily influenced by any one of the options.

Thomas Mindermann, MD

Zurich, Switzerland

Patient-reported data are becoming increasingly important in clinical studies. They may be complementary to hard endpoints, or constitute primary targets in conditions where hard endpoints are hardly found, such as in pain relief after lumbar disc surgery. In vestibular schwannoma, survival is hardly a valid target and recurrence may be ill-defined as management strategies are highly diverse. It has been shown that the tumor or its treatment may affect the patients’ quality of life. Thus, validating and implementing PANQOL for German language is important. PANQOL is a disease-specific questionnaire for VS and is being increasingly used. The steps in the process of translating and validating the questionnaire is well described in the article and may serve as a guideline for neurosurgeons who want to implement a questionnaire into a new language in a scientifically correct way.

Morten Lund-Johansen

Bergen, Norway

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Kristin, J., Glaas, M.F., Stenin, I. et al. Multistep translation and cultural adaptation of the Penn acoustic neuroma quality-of-life scale for German-speaking patients. Acta Neurochir 159, 2161–2168 (2017). https://doi.org/10.1007/s00701-017-3304-z

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  • DOI: https://doi.org/10.1007/s00701-017-3304-z

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