Multistep translation and cultural adaptation of the Penn acoustic neuroma quality-of-life scale for German-speaking patients
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).
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.
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.
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.
KeywordsPANQOL Vestibular schwannoma Translation process German version
Vestibular schwannomas (VSs) are benign, slow-growing tumors of the cerebellopontine angle originating from the eighth cranial nerve . Its annual incidence has been estimated at 1/100,000 , which can be extrapolated to approximately 800 new cases in Germany per year. Decisions regarding management depend on the patients’ demographics (age, gender, general health), clinical symptoms, and tumor size among other criteria. There are basically three different concepts: wait and scan with MRI; surgical tumor removal; and radiosurgery, radiotherapy, or a combination of these treatments. Individual factors, tumor stage and the expertise and experience at the different centers for skull base surgery and radiotherapy play a role in advising patients. It is of great importance that the chosen treatment for VS should be better for the patient than the natural course of the disease. Unfortunately, this goal is not always achievable. To date, the side effects of the treatment are sometimes more serious than the symptoms of the tumor itself. For the patient and the treating physician, the current and post-therapeutic health-related quality of life (HRQOL) must be considered.
Assessment of the HRQOL of patients with VS has become increasingly important. The WHO defines QOL as follows: “Quality of life is defined as an individual’s perception of his/her position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, and their relationship to salient features of their environment” . The availability of data through E-Health, the exchange of information within patient self-aid groups, and the request for greater patient empowerment  have led to a rising interest in the patients’ views regarding treatment outcomes. Some post-treatment effects such as anxiety, vitality, or other specific concerns are only known to the patient. The evaluation of how satisfied one is with one’s life cannot be verified by statements or documents from third parties . Reports of physical function can only be observed accurately by the treating physician.
The general Short Form-36 Health Survey (SF-36) is an established, cross-disease measuring tool gauging the HRQOL, but this form is not disease-specific. The Penn Acoustic Neuroma Quality-of-life Scale (PANQOL) is a specific questionnaire that was established in the USA by Michael J. Ruckenstein and his team in 2010 . However, neither PANQOL nor a similar specific questionnaire is available in German-speaking countries. This PANQOL questionnaire is specific for individuals with VS and comprises 26 questions that focus on the following areas: hearing, balance, facial paralysis, pain, anxiety, energy, and general health.
The aim of our project is to translate and culturally adapt the PANQOL questionnaire for German-speaking individuals.
Materials and methods
The first step is the initial translation. Two forward translations were conducted by different people—one has a medical background, whereas the second person (the “naive” translator) does not. This resulted in versions F1 and F2 (F = forward translation). In the second step, the two translators and the primary researchers integrated F1 and F2 and produced a common translation (F12), which was documented with a written report. The third step consists of back translation of the F12 version back into English by two native English speakers, which resulted in B1 and B2 (B = backward translation). This process of validity checking ensures that the German translation accurately reflects the same information as the original English version. This step is also documented with a written report. In the fourth step, all the versions of the PANQOL (original, F1, F2, F12, B1, and B2) were amalgamated by an expert committee that comprised bilingual translators, head and neck surgeons, a German language specialist, and a professional translator who is an English language specialist. Semantic equivalence, idiomatic equivalence, experiential equivalence, and conceptual equivalence were screened and checked, and the prefinal German version was completed. The fifth step involved testing the prefinal version on patients with VS who underwent microsurgical translabyrinthine resection of the tumor. A total of 123 patients with VS underwent microsurgical procedures via different approaches at our hospital between January 2007 and January 2017. Among them, 103 patients underwent a translabyrinthine approach, 3 a subtemporal approach, 1 a transmastoidal approach, 5 a retrosigmoid/suboccipital approach, and 3 a retrolabyrinthine approach. The remaining eight patients underwent different surgical approaches for relapsing VS after previous surgical or radiotherapy treatment. We selected 72 patients who underwent microsurgical tumor removal using the translabyrinthine approach to allow for direct comparisons. All the patients completed the prefinal version of the PANQOL without external help at home and sent it back to us. Additionally, a researcher interviewed the patients by telephone about their understanding of each item in the prefinal version of the German PANQOL, and reports were written to document this process. In the last step, all the associated documents of the German version of the PANQOL were checked by the research team for approval of the translation and cultural adaptation process. This step resulted in the final translated version of the PANQOL for German-speaking patients.
The first German version of the PANQOL questionnaire was created based on the completed multistep translation process. We evaluated 72 questionnaires that were filled out completely and correctly. In the follow-up telephone interview, all 72 patients stated that the questionnaire was easy to handle because of the given structure. The following advantages were stated by the patients: the number of questions (26) made the PANQOL easy to read, the questions were specific to the patients’ problems, there were no free text answers, and the presentation was familiar. Some participants wished to have extra space below the questions to add comments. Three of the questions appeared to be a little challenging (see Table 4). In conclusion, the German version of the PANQOL showed simple handling and good applicability to our patients.
Assessment of the translation process
Steps 1 and 2 (Table 1): The translation and synthesis of F1 and F2 to the F12 version were performed with some modifications made after analyzing the differences between F1 and F2. We preferred more colloquial terms and expressions than clinical jargon. The following altered questions (Q) are examples of these adjustments.
Assessment of the translation process (steps 1 and 2)
People will think I am intoxicated
People will think I am drunk
My health is excellent
I am top fit
Step 3: Back translation (Table 2): The back translations B1 and B2 showed great similarity between each other but presented some differences from the original version of the PANQOL.
Assessment of the translation process: step 3
Follow a conversation
Carry on a conversation
I feel dizzy plenty of times
I have significant problems with dizziness
I feel insecure standing up
I feel unsteady or off balance
I have troubles walking in the dark at home
I have difficulty walking around my house in the dark
I panic suddenly
I get sudden feelings of panic
I have difficulties memorizing
I have difficulty remembering things
- Step 4: Expert committee (Table 3):
The design of the questionnaire with five possible answers (strongly disagree, disagree, neutral, agree, strongly agree) does not appear to be ideal because people tend to choose “neutral” if they are unsure. However, the committee decided not to change the original design of the PANQOL for German-speaking patients because of a better comparison of our results to English-speaking patients.
In general, the committee checked for additional grammatical errors, syntax, wording, synonyms, and linguistic expressions to create a prefinal version for the patients.
Every question was compared among the different translations (F1, F2, F12, B1, B2).
Assessment of the translation process: step 4
Original: Hearing loss; the committee decided to use the term reduced hearing
German wording is changed (Gespräch führen)
The F12 translation was incorrect. The German wording was changed to hissing instead of humming
Grammatical changes: we added a (an itching or an excessive tearing) in the German translation
Original: to accomplish less. There are different terms in German with similar meanings: “to achieve the goal” or “to manage to finish the project.” Finally, we chose the phrase “to achieve the goal”
Q 13 and Q 20
Currently, the term acoustic neuroma has been replaced by vestibular schwannoma in the literature. However, for most German patients, only the term acoustic neuroma is known. In conclusion, both terms were used in the prefinal version: acoustic neuroma (vestibular schwannoma)
Butterflies in my stomach: this expression has different meanings in German (positive: being in love; negative: strange feeling (weak sense) in my stomach)
The German translation for “momentum” was changed to that for “drive”
Step 5: Test of the prefinal version on patients (Table 4): Administration of the prefinal version to patients who underwent microsurgical removal of VS revealed that three questions appeared to be challenging to understand.
Assessment of the translation process: step 5
I get a sort of frightened feeling as if something awful is about to happen
Do these questions relate to the diagnosis of VS or the treatment only, or is it generally meant?
Worrying thoughts go through my mind
I feel as if I am slowed down
Patients are unsure about the meaning; could refer to physical, mental, or general problems
Step 6: All the results led to the final translated version of the PANQOL (Fig. 2).
During the process of communicating the diagnosis of VS to a patient and deciding which option is individually recommended as the best treatment method, there should be a focus on the HRQOL. Among patients with VS, HRQOL appears to be most influenced by vertigo, whereas unilateral hearing loss and tinnitus have less impact . Additionally, patients report a negative benefit on the general and physical sections of the Glasgow Benefit Inventory (GBI). Management of VS remains controversial, which poses a difficult situation for both the patient and the advising physician. It is the doctor’s task to educate the patient and see to it that the patient‘s decision is based on correct clinical information. Patients have to be informed about all available treatment options.
Carlson et al.  state that the diagnosis of VS rather than the treatment strategy most significantly impacts the HRQOL. They surveyed patients using the SF-36, the 10-item Patient-Reported Outcomes Measurement Information System short form (PROMIS-10), the GBI, and the PANQOL. The differences they observed in the HRQOL outcomes following stereotactic radiosurgery, observation, and microsurgery for VS were small. When comparing the implementation of radiotherapy (RT) and microsurgery (MS) as well as observation among 807 patients  using the PANQOL, the outcomes of patients with small tumors in the observation group were obviously better regarding balance and energy compared to patients in the RT and MS groups. A strong negative correlation was observed between self-reported symptoms and the HRQOL with balance problems and vertigo having the largest impact. The authors acknowledged that they cannot exclude the possibility that the patients in the RT and MS groups were more affected by these effects before starting active treatment. No correlation was found between the PANQOL score and the time since treatment. The only significant (but important) difference between the RT and MS groups was demonstrated for the face subdomain. Similar results are shown by the review article by Arthurs et al.  for radiosurgery. They report facial neuropathy in 2%–19% of patients who underwent radiosurgical intervention compared with 14%–29% of patients who underwent MS. The results are independent of tumor stage and follow-up time: The majority of the MS group was classified as Koos 3 or 4 including splicing of the facial nerve. Recovery of temporary facial nerve paralysis could not be considered because of the different follow-up time periods. From our expertise and point of view, patients experience a strong reduction of HRQOL if facial nerve function is hindered postoperatively. However, we cannot systematically evaluate this change in HRQOL with an appropriate instrument in German to date. The aim of microsurgical treatment is complete resection of the tumor while functionally preserving the cerebral nerves, brain stem, cerebrum, and temporal lobe, and currently functional integrity has a higher priority than total resection. Carlson et al.  described the management of VS in the US between 2004 and 2011 with 47.8% of patients receiving microsurgery, 24.7% radiation therapy, and 28.5% observation. Approximately 81.6% of the microsurgical resection group achieved total resection, whereas 18.4% experienced incomplete tumor resection. Because these interventions do not appear to improve the HRQOL compared to observation, initially small- and medium-sized VSs should be observed, whereas patients with either profound tumor growth or symptoms limiting HRQOL should receive active treatment. Keeping the HRQOL in focus for the treatment of large VSs , therapy for facial nerve paralysis is required more often after total resection (28.0%) than after near total (NT) and subtotal (ST) (8% and 21%, respectively) with no other differences in complications. However, the NT and ST groups had a significantly higher rate of regrowth than after total resection (21% and 22%, respectively, versus 3%).
Personalized interdisciplinary therapy decisions that consider the HRQOL are essential and must also accept the patient’s wishes after communicating all the appropriate medical information. To better educate patients, it is necessary to provide information about HRQOL assessments with a specific questionnaire such as the PANQOL questionnaire. This fact requires the availability of questionnaires in multiple and appropriate languages.
This is the first translation process described in detail for the PANQOL in a foreign language. C. Aquadro et al.  recommended that investigators should specifically describe the translation process used to ensure the credibility of their methods. Currently, the PANQOL is available in English , Dutch , and Spanish . The latter two publications focused on the validation process but did not provide much detail regarding the translation. The multistep process of translating HRQOL questionnaires is complex and time-consuming and requires a multidisciplinary team of different professionals. We have built a team comprising head and neck surgeons, translators, and language specialists and followed the stated principles of the translation process, including the documentation of every step. Testing the prefinal version on our patients after microsurgical removal of the VS revealed that questions 15–17 were not clearly understood by all the patients. The interviewees asked whether Q 15 (“I get a sort of frightened feeling as if something awful is about to happen”) and Q 16 (“Worrying thoughts go through my mind”) refer to experiences relating to VS and/or related treatments or in general. Q 17 (“I feel as if I am slowed down”) raised the possibility of whether this question relates to physical, mental, or general problems. Different possibilities could solve these problems. On the one hand, specifying the question would clarify any misunderstandings; on the other hand, addressing specificity could complicate the ability to compare these results with those in other languages. Interviewing people after completing the questionnaire is additionally time-consuming and not always practical. Adding space for comments at the end of the questionnaire gives the patient the option to add information, that could be important for himself/herself.
There are different guidelines for translating patient-reported outcome measures , most of which propose a multistep process including forward and backward translation. Some examples of these processes were described by Beaton and Guillemin (AAOS guidelines [5, 9]), who were the first to propose that cross-cultural adaptation is required, the Mapi Research Institute , and the International Quality of Life Assessment (IQOLA) Group, which was established in 1991 to translate and validate the SF-36 Health Survey. They all showed that producing a high-quality translation of HRQOL questionnaires is labor-intensive and time-consuming. MacEntee et al.  stated that although forward-backward translations are the basis for linguistic equivalence, one-third of the translations they compared either did not conduct this step or did not mention its inclusion. One aspect of good clinical practice is to obtain permission from the developer to translate the original test [3, 21]. C. Aquadro et al.  did not find evidence in favor of one specific method of translation but strongly advise researchers to adopt a multistep approach as a guarantee of quality.
The multistep process of the translation of HRQOL questionnaires is complex and time-consuming and requires a multidisciplinary team of professionals. The process was performed properly and resulted in a version of the PANQOL that could successfully assess the HRQOL for German-speaking patients with VS.
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.
Compliance with ethical standards
Conflicts of interest
- 1.Acquadro C, Conway K, Giroudet C, Mear I (2004) Linguistic validation manual for patient-reported outcomes (PRO) instruments. Mapi Research Institute, LyonGoogle Scholar
- 2.Acquadro C Conway K Hareendran A Aaronson N (2008) Literature review of methods to translate health-related quality of life questionnaires for use in multinational clinical trials. European Regulatory Issues and Quality of Life Assessment (ERIQA) group. Value Health. 11(3):509–521Google Scholar
- 6.Carlson ML, Tveiten OV, Driscoll CL, Goplen FK, Neff BA, Pollock BE, Tombers NM, Castner ML, Finnkirk MK, Myrseth E, Pedersen PH, Lund-Johansen M, Link MJ (2015) Long-term quality of life in patients with vestibular schwannoma: an international multicenter cross-sectional study comparing microsurgery, stereotactic radiosurgery, observation, and nontumor controls. J Neurosurg 122:833–842CrossRefPubMedGoogle Scholar
- 13.Patrick D (2002) Concept of health-related quality of life and of patient-reported outcomes. In: Chassany O, Caulin C (eds) Health-related quality of life and patient-reported outcomes: scientific and useful criteria. Springer, ParisGoogle Scholar
- 18.Soulier G, van Leeuwen BM, Putter H, Jansen JC, Malessy MJ, van Benthem PP, van der Mey AG, Stiggelbout AM (2017). Quality of life in 807 patients with vestibular schwannoma: comparing treatment modalities. Otolaryngol Head Neck SurgGoogle Scholar
- 20.World Health Organisation (1993) The development of the World Health Organization Quality of Life assessment instrument (WHOQOL). Study Protocol-WHOGoogle Scholar
- 21.World Intellectual Property Organization [homepage on the Internet]. Geneva: the Organization. Berne Convention for the Protection of Literary and Artistic Works. Available from http://www.wipo.int/treaties/en/ip/berne/trtdocs_wo001.html. Date last accessed: 12 July 2017