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

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, healthcare 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.

Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study

“…This might also be a difficulty in the use of other measures of the POS in clinical care when assessing the burden of people with cognitive impairment for other reasons than dementia or in the dying phase. 28 Although such challenges are reported from studies implementing the IPOS, 10,20,[28][29][30] this study identifies this challenge already within a cultural validation study. The reason for this could be the patient-centered nature of the POS measures as the gold standard is patient completion and thus validation studies include patients able to communicate.…”

“…The reason for this could be the patient-centered nature of the POS measures as the gold standard is patient completion and thus validation studies include patients able to communicate. 20 , 29 Because of the disease trajectory of dementia often leading to limited communication ability, the IPOS-Dem is being validated primarily for the use as a proxy assessment. This study is to our knowledge the first to point out this challenge of using patient reported outcome measures as patient centered proxy-assessments.…”

Measurement equivalence of the paper-based and electronic version of the Integrated Palliative care Outcome Scale (IPOS): A randomised crossover trial

“…The lower kappa values for the emotional subscale may point towards differences in interpretation of the underlying constructs being measured by the items and should be addressed in future studies on content and cross-cultural validity. 57 …”

A methodological study on the combination of qualitative and quantitative methods in cognitive interviewing for cross‐cultural adaptation

“…Some authors have suggested a thematic approach in the testing process. process (Gerlach et al, 2020;Halls et al, 2018;Murphy et al, 2018).…”

“…The processes related to the problems, such as appraising items to find problems, developing probes based on problems and analysing items reported with problems, are inconsistent. The strategies applied have varied from person to person, and different analysis methods have been used based on qualitative methodologies (Eeg-Olofsson et al, 2020;Gerlach et al, 2020;Simwinga et al, 2019). However, there are key differences between cognitive interviews and qualitative analysis approaches (Cassidy et al, 2020).…”