PREM-C9 COPD patient experience questionnaire: Portuguese translation and content validity

Extract

People with COPD can experience a complex and challenging journey through healthcare services due to the chronic and progressive nature of the disease and frequent interactions with various healthcare providers [1]. They frequently manage pulmonary and extrapulmonary manifestations, making it essential to assess their satisfaction with symptom control and management strategies [2]. Hence, understanding patients' experiences with healthcare services is crucial.

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The Portuguese version of the PREM-C9 questionnaire is translated and culturally adapted for people with COPD, providing a tool to assess patient experiences, guide patient-centred care and support quality improvements in Portuguese healthcare https://bit.ly/48QhSFS

To the Editor:

People with COPD can experience a complex and challenging journey through healthcare services due to the chronic and progressive nature of the disease and frequent interactions with various healthcare providers [1]. They frequently manage pulmonary and extrapulmonary manifestations, making it essential to assess their satisfaction with symptom control and management strategies [2]. Hence, understanding patients' experiences with healthcare services is crucial.

Patient-reported experience measures (PREMs) are tools used to capture patients' perceptions of their healthcare experiences, including the quality of care received, communication with healthcare providers, and overall satisfaction with treatment and services [3]. PREMs provide insights into the process and experience of care delivery, being vital for improving patient-centred care, enhancing healthcare quality, and informing healthcare policies and best practices [3].

The COPD patient experience healthcare questionnaire (PREM-C9) was developed to highlight what people with COPD find important regarding their condition and care, and can help healthcare providers establish patient-prioritised goals in management programmes [4]. The PREM-C9 includes nine items covering various aspects of patients' interactions with healthcare providers and the healthcare system, including communication, coordination of care and support received. Individuals rate their experience on a scale from 0 to 5 for each item, resulting in a total score ranging from 0 to 45. Higher scores indicate a more negative experience with the healthcare interactions and quality of care received [4].

However, there is currently no Portuguese translation of this questionnaire. Therefore, we aimed to translate, cross-culturally adapt and examine the content validity of the Portuguese version of the PREM-C9.

Translation and cultural adaptation were carried out according to international recommendations [5], including initial translation, evaluation of this translation and cultural adaptation by a panel of experts, and back translation. Authorisation for the translation and validation process was first obtained from the original authors. The translation was performed independently by two native Portuguese researchers/respiratory physiotherapists fluent in English (R. Vilarinho and C. Jácome). These translations were evaluated by an expert panel (two translators, two family physicians, one physiotherapist and one nurse). This expert panel consisted of researchers with clinical experience in the care delivery of people with chronic respiratory diseases across different clinical areas, particularly COPD. Moreover, all expert panel members had prior experience in translation, cultural adaptation or the assessment of measurement properties of instruments. Disagreements about the translation were discussed by the panel in an online meeting, in which concerns about specific terms used were highlighted as potential source of confusion for respondents with lower educational levels (table 1). A synthesis of this discussion produced one common preliminary version.

TABLE 1.

Examples of problematic wording used in the forward translation stage, along with the panel solutions proposed

“Everyday life”	Although there is a direct translation of “everyday life” (vida quotidiana), during the expert panel discussion it was mentioned that people with lower literacy levels may struggle to interpret it or apply it to their experience. Different options were discussed and this expression was replaced by dia-a-dia (“day-to-day” in English).
“Frustrated”	Although there is a direct translation of “frustrated” (frustrado), during the expert panel discussion it was mentioned that people with limited emotional vocabulary or lower literacy levels may struggle to interpret it or apply it to their experience.
“Lifestyle”	Although the direct translation of “lifestyle” (estilo de vida) was used, the panel of experts mentioned that people may struggle to interpret or apply it to their experience.
“Flare-up”	We opted to use the word crise (“crisis” in English), which effectively conveys the idea of a sudden worsening or episode of symptoms, particularly in medical contexts. It avoids overly technical language while still conveying the seriousness of the event. It is also a well-established term in Portuguese, making it accessible to an older audience.
“Exacerbation”	Although there is a direct translation of “exacerbation” (exacerbação), it is not widely used in Portugal. Therefore, the direct translation was not used. Instead, the panel opted for the term agudização, which is the one more commonly used in national guidelines and is the term broadly used in clinical practice to describe a worsening of a chronic condition. It is precise and accurate for clinical use. In addition, healthcare providers typically use this term when communicating with patients.

A convenience sample of 10 people with a confirmed diagnosis of COPD examined the content validity of the PREM-C9. Approval was obtained from the Ethics Committee of the School of Health Fernando Pessoa (ESS/PI – 608/24-2) and written consent forms obtained. This sample was recruited through a purposive sampling method involving in-person recruitment through community centres and senior universities. Sociodemographic (age, sex, marital status and educational level) and clinical data (COPD duration, comorbidities through the Charlson Comorbidity Index (CCI), smoking status, body mass index (BMI), long-term oxygen use, noninvasive ventilation, number of exacerbations, healthcare utilisation due to COPD exacerbation in the previous year, modified Medical Research Council (mMRC) grade, COPD Assessment Test (CAT) score and Global Initiative for Chronic Obstructive Lung Disease (GOLD) ABE classification) were collected as they can influence perception of care experiences and understanding of the PREM-C9 items. This approach ensured that the Portuguese version of the instrument was tested on a diverse population, in order to capture a wide range of experiences across all PREM-C9 domains.

Participants were asked to complete the PREM-C9 and completion time was recorded. They were asked to provide feedback on the questionnaire's clarity, relevance, coverage of important COPD care delivery aspects, length, formatting, proposed items and any missing relevant items. The evaluation of the content validity was performed using in-person, audio-recorded, individual cognitive interviews.

The expert panel met a second time to analyse all the previous contributions and to produce a final Portuguese version of the PREM-C9. Then, the Portuguese version of PREM-C9 was back-translated by one bilingual researcher with source language (English) and with no prior knowledge of the questionnaire. The back translation was assessed and compared with the original by the panel of experts. In addition, a copy of the English consensus version was sent to the original authors for their approval.

Participants were of different ages, with a median (interquartile range) of 70.5 (60.25–78) years, mostly female (60%) and had a median BMI of 23.2 (22.1–25.8) kg·m⁻². The median time since the COPD diagnosis was 22.5 (13–31) years. Half were single or divorced, while the other half were married or living with a partner. Educational levels varied, where 30% had completed only primary education (4 years), 20% had completed lower secondary education (5–9 years), 10% had completed upper secondary or vocational education (10–12 years) and 40% had obtained a higher education qualification (college or university degree). Most participants were retired (60%) while 40% were employed. Half of the participants reported never having smoked, while the other half were current smokers with a median smoking load of 25 (12.4–59.3) pack-years. The median CCI score was 4.5 (3.75–5.75), the median mMRC grade was 2 (1–2) and the median CAT score was 14 (4–28). 40% were on long-term oxygen therapy and 20% used noninvasive ventilation. In the previous year, 30% of participants had unscheduled consultations, 20% visited emergency departments and 30% were hospitalised due to acute exacerbations of COPD. According to the GOLD ABE classification, 40% were in group A, 40% in group B and 20% in group E.

The main results showed that participants presented a median PREM-C9 score of 4 (3–5) and took a median of 3.5 (2.7–4.7) minutes to complete the PREM-C9. They reported that its content was accurately representing their perceptions with healthcare experiences and they all agreed that the tool would be a useful addition to clinical practice. The words dia-a-dia (“every day”), frustrado (“frustratred”) and estilo de vida (“lifestyle”) were understandable and no alternatives were suggested. Some participants mentioned that the use of the expressions “high score” and “low score” next to the scoring scale could make the questionnaire difficult to understand.

The original authors approved the English consensus version without making any further suggestions. The Portuguese version of the PREM-C9 questionnaire is now available upon request.

This study presents the first validated translation of a PREM for people with COPD in European Portuguese, having adapted the PREM-C9 questionnaire for the Portuguese context. The availability of the Portuguese version of the PREM-C9, alongside the existing versions in Polish [6], Catalan and Spanish [7], represents an important first step towards its use in routine clinical practice, helping to identify key areas of COPD care that require improvement.

During the translation and cultural adaptation process, particular attention was given to ensuring semantic, conceptual and cultural equivalence between the Portuguese version and the original PREM-C9. Careful consideration was required for some terms in the Portuguese version to preserve their intended meaning and ensure they were expressed naturally. For example, the Catalan and Spanish authors replaced the word “frustrated” with alternatives such as “disappointed” or “worried” due to its limited use among older adults [7]. However, this was not necessary in the Portuguese version because participants considered the word was understandable and no alternatives were suggested. These cross-cultural nuances underscore the importance of linguistic sensitivity in adapting these types of instruments, as direct translations may not fully capture the experiential dimensions of participants’ responses.

As a limitation of our study, the PREM-C9 scores of our participants were relatively low with a median of 3.5 (2.7–4.7). This limited the inclusion of participants with a broader range of experiences, thereby reducing the representativeness of the sample with regard to variability in PREM-C9 scores. However, our study aimed to assess content validity by examining the linguistic and cultural equivalence of the translated version rather than assessing measurement properties across the full spectrum of patient experiences. Therefore, further research is needed to examine its real-world use and measurement properties according to Consensus-based Standards for the Selection of Health Measurement Instruments recommendations.

Data availability

The data are available upon request from the corresponding author.