Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting—German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal
Original Article

Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting—German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal

Corinna Sewtz1#, Wiebke Muscheites1#, Ursula Kriesen1, Christina Grosse-Thie1, Brigitte Kragl1, Jens Panse2, Samar Aoun3, David Cella4, Christian Junghanss1

1Department of Medicine, Clinic III – Hematology, Oncology, Palliative Medicine, Rostock University Medical Center, Rostock, Germany; 2Department of Hematology, Oncology, Hemostaseology, and Stem Cell Transplantation, Faculty of Medicine, RWTH Aachen University, Aachen, Germany; 3School of Nursing and Midwifery, Faculty of Health Sciences, Curtin University, Perth, Australia; 4Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA

Contributions: (I) Conception and design: C Junghanss; (II) Administrative support: C Sewtz, W Muscheites, D Cella, S Aoun; (III) Provision of study materials or patients: C Sewtz, W Muscheites, D Cella, S Aoun; (IV) Collection and assembly of data: C Sewtz, W Muscheites; (V) Data analysis and interpretation: C Sewtz, W Muscheites; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

#These authors contributed equally to this work.

Correspondence to: Prof. Dr. med. Christian Junghanss. Universitätsmedizin Rostock, Zentrum für Innere Medizin, Klinik III - Hämatologie, Onkologie, Palliativmedizin, Ernst-Heydemann-Straße 6, 18057 Rostock, Germany. Email: Onkologie@med.uni-rostock.de.

Background: The evaluation of quality of life (QoL) and satisfaction with care in palliative care patients and their relatives is an important aspect of palliative care research, likewise important to get a direct feedback for the success of treatment. Here, questionnaires are important tools for measuring outcomes of care in medicine. Several validated, predominantly English, questionnaires already exist. These have been translated in different languages but German. The Functional Assessment of Chronic Illness Therapy (FACIT) is an established tool for the evaluation of QoL in cancer patients. The FACIT-Pal, a 46-item-questionnaire of this group of questionnaires, measures the QoL in palliative care patients. It includes a new palliative care subscale which is not yet available in German. The FAMCARE-2, a 17-item-questionnaire, evaluates the relatives’ satisfaction with the care and support they received from palliative care team.

Methods: The translation process followed a protocol including multiple independent translators as well as a forth and back translation.

Results: A German version of FAMCARE-2 and FACIT-Pal was translated based on the original questionnaire. Relevant differences between the English original versions and the back translations weren't revealed by the original scale developers.

Conclusions: The final versions of the German translations have been authorized by the scale developers. The FAMCARE-2 and the FACIT-Pal are now available in German and can be used for research and quality control purposes.

Keywords: Palliative care; quality of life (QoL); QoL questionnaire; satisfaction with care; FACIT-pal; FAMCARE-2


Submitted Mar 06, 2018. Accepted for publication Mar 19, 2018.

doi: 10.21037/apm.2018.03.17


Introduction

The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness” (1).

Quality of life (QoL) itself cannot be uniquely defined as it composes for every individual differently depending on unique experiences and expectations. Thus QoL has to be defined individually for every person. Accordingly it remains challenging to transfer the idea of “QoL” to a concrete definition allowing collecting respective data sets for scientific interpretation.

The evaluation of QoL in a palliative care setting is a precondition for the establishment of high qualitative care procedures. Previous studies showed that the attending physicians’ estimation of the patient’s QoL differs from the patient’s self-assessment (2).

In order to evaluate if measures and procedures achieve the goals of palliative care, a direct feedback of the concerned patient group is inevitable.

Several research teams already have composed questionnaires evaluating QoL to allow qualitative and quantitative analyses of different QoL aspects.

Examples are the QLQ-C15-PAL of the EORTC (European Organization for Research on Treatment of Cancer) Quality of Life Group (3), the McGill Quality of Life Questionnaire (MQoL) (4) as well as the FACIT-Pal (5-9) of the Functional Assessment of Chronic Illness Therapy (FACIT) group of questionnaires (10,11).

The respective questionnaires are currently only partially available in German limiting their application field to Anglophone areas.

The FACIT-Pal questionnaire is composed of 46 questions, 19 of those, concerning the palliative care subscale, were first published by Greisinger et al. (5). All FACIT questionnaires include a basic questionnaire assessing physical, social, emotional and functional status. The questionnaires are completed by specific subscales, in this case a palliative care subscale. As a result one receives a comprehensive picture of general aspects, covering a wide patient collective as well as specific aspects addressing selected patient groups. The basic questionnaire is available in German while the specific palliative care part is currently only available in Japanese, Portuguese and Malay.

Concerning the relatives’ satisfaction with the provided care there is a smaller variety of questionnaires available allowing a statistical assessment. Two examples are the Quality of End-of-Life care and Satisfaction with Treatment (QUEST) (12) and the FAMCARE-2 (13). Both questionnaires are currently not available in German. The FAMCARE-2 addresses the satisfaction with several palliative care aspects within 17 questions. Its previous version—FAMCARE—is widely established in surveys among relatives in Anglophone countries (14-17). In contrary to the FAMCARE, the FAMCARE-2 does not ask for the family’s perception of a specific care taker’s performance but for the perception of the care team’s performance (13). It is applicable to inpatient and outpatient settings. The FAMCARE-2 is currently only available in English, Italian and Swedish.

Herein we introduce to the best of our knowledge for the first time in German the two key questionnaires FAMCARE-2 as well as the specific palliative care subscale of FACIT-Pal. The translations to German were performed with a structured methodology and finally authorized by the original scale developers. The questionnaires are currently in use in the PaRoLi study (Palliative Care in Rostock: Focus on Quality of Life) and are now available for scientific research in German speaking areas.


Methods

Initially the consent of the original scale developers was given to translate their questionnaires.

To achieve an adequate and internationally comparable version, the translation was performed according to the FACIT standard translation protocol (Figure 1) including several independent translators having extraordinary skills in English and German.

Figure 1 Translation process of the FACIT-Pal and the FAMCARE-2. The translation followed a structured translation protocol. First, translations from English into German were performed by two independent translators (see Translator 1 and 2). Translator 3 summarized both versions into one German version which was back-translated by Translator 4 into English. Finally the versions were approved by the original scale developers.

Initially the translation was performed by two individual translators from English to German. In the following a third translator unified both translations resulting in a single version. A fourth translator translated the obtained version back to English without knowing the original English template. The newly generated English version was sent to the developers of the original questionnaires for approval.

During the course of translation of FACIT-Pal the scale developers required an additional testing of the translated questionnaires of ten test patients. After the patients completed the questionnaire an additional “Patient Interview Form” was filled in by the participants. This additional form asked for personal perceptions concerning questions, key words and understanding of the questionnaire. Further, some sentences had to be paraphrased. With special interest statements were analyzed, whether they were misunderstandable or inadequate. The completed translated questionnaires and the additional evaluating datasets were sent to the original FACIT-Pal developers.

As FAMCARE-2 does not require a standard translation protocol the questionnaire was translated as described for FACIT-Pal. The translation was not followed by an additional questioning of 10 persons. The final translated questionnaire was finally approved by the developers of the original questionnaire.


Results

The translation was performed between March and May 2013. The German translations are displayed in the Figure 2 (FACIT-Pal—German translation) and Figure 3 (FAMCARE-2—German translation). For the full German version of the FACIT-PAL including the general FACIT questions which had been translated earlier, see supplement material (Figure S1). The original sense of the questions was not altered. The original scale developers did not find significant discrepancies between their original questionnaire and the newly generated back translated version.

Figure 2 FACIT-Pal (Palliative Care Subscale)—German translation. Family care subscale of the Functional Assessment of Chronic Illness Therapy (FACIT) system with items that pertain to persons with life-limiting illness.
Figure 3 FAMCARE-2—German translation. Family Carer Satisfaction with Palliative Care scale (FAMCARE-2) measures family satisfaction with care in the setting of serious illness.
Figure S1 FACIT-Pal—German translation.

Discussion

Herein we report the translation of two important questionnaires in palliative care and the trial versions authorized by the original questionnaire developers.

The utilization of questionnaires is key when complex trails as palliative care are to be evaluated in evidence based research approaches. Several international versions of the FACIT-Pal (8,18) and the FAMCARE-2 (19,20) proved as useful tools to evaluate and measure QoL of palliative care patients as well as the procedural care satisfaction of the accompanying relatives.

The translation of an established questionnaire requires more than simple direct wording translation. An additional adaption of the phrasing must be performed to ensure the conservation of the original meaning and structure.

Currently the QoL of inpatient and outpatient patients and their relatives is being evaluated within the PaRoLi study (21). Patients and relatives using the German questionnaire translation feel that the questionnaires are easily understandable and easily to be completed. The questionnaires were well accepted by the majority of the asked people.


Conclusions

The translated versions of FACIT-Pal and FAMCARE-2 can now be introduced in studies performed in German speaking areas.


Acknowledgements

We would like to thank Jason Bredle for his excellent help and cooperation during the course of translation of the FACIT-Pal. Furthermore we would like to thank all staff of the Palliative Care Unit of the University of Rostock for their dedicated work and their ongoing willingness to help within this project. We would also like to thank all patients, who participated, for sharing a part of their precious time with us.


Footnote

Conflicts of Interest: The authors have no conflicts of interest to declare.

Ethical Statement: Prior to translation, the study protocol and data collection plan were approved by the institutional review boards and ethical committee of Rostock University Medical Center (No. A 2013-0028). The patients provided informed written consent.


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Cite this article as: Sewtz C, Muscheites W, Kriesen U, Grosse-Thie C, Kragl B, Panse J, Aoun S, Cella D, Junghanss C. Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting—German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal. Ann Palliat Med 2018;7(4):420-426. doi: 10.21037/apm.2018.03.17