Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

• DOI: 10.21203/rs.2.18712/v1
• Publication Date: 2019-12-12T18:58:43Z
• Authors: Christina Gerlach; Kathy Taylor; Marion Ferner; Markus Munder; Martin Weber; Christina Ramsent...
• Keywords: Quality of life; Adult; Male; 0301 basic medicine; Psychometrics; Health Personnel; 610 Medizin; 610; Cultural adaptation; 03 medical and health sciences; 0302 clinical medicine; Multiple myeloma; Surveys and Questionnaires; 610 Medical sciences; Outcome Assessment, Health Care; Humans; RC254-282; Aged; ddc:610; Cultural Characteristics; Neoplasms. Tumors. Oncology. Including cancer and carcinogens; Reproducibility of Results; Haematological malignancy; Middle Aged; Translating; Patient-reported outcome measurement; 3. Good health; Quality of Life; Female; Symptom Assessment; Multiple Myeloma; Supportive care; Research Article; Follow-Up Studies

Abstract Background Patients with multiple myeloma report more problems with quality of life (QoL) than other haematological malignancies over the course of their incurable illness. The patient-centred Myeloma Patient Outcome Scale (MyPOS) was developed to assess and monitor symptoms and supportive care factors in routine care. Our aim was to translate and culturally adapt the outcome measure to the German context, and to explore its face and content validity. Methods Translation and cultural adaptation following established guidelines used an exploratory, sequential mixed method study design. Steps included: (1) forward translation to German; (2) backward translation to English; (3) expert review; (4) focus groups with the target population (patients, family members, health care professionals) to achieve conceptual equivalence; (5) cognitive interviews using Tourangeau’s model with think-aloud technique to evaluate comprehension and acceptability; (6) final review. Results were analysed using thematic analysis. Results Cultural and linguistic differences were noted between the German and English original version. The focus groups (n = 11) and cognitive interviews (n = 9) both highlighted the need for adapting individual items and their answer options to the German health care context. Greater individuality regarding need for information with the right to not be informed was elaborated by patients. While the comprehensive nature of the tool was appreciated, item wording regarding satisfaction with health care was deemed not appropriate in the German context. For implementation into routine care, careful handling of data was addressed as a barrier, whereas the MyPOS itself was perceived as a facilitator/prompt for a patient-centred discussion of QoL issues. Conclusion With adaptations to answer options and certain items, the German version of the MyPOS can help monitor symptoms and problems afflicting myeloma patients over the course of the disease trajectory. It can help promote a model of comprehensive supportive and patient-centred care for these patients.