Evaluation of healthcare is an evolving concept, and the patient's perspective is increasingly sought to provide a more patient-centered service. Methods such as surveys address the needs of policy makers for accountability and transparency,1 but these have been criticized for a number of reasons, including excessive survey length, infrequent sampling frequency, slow feedback and failure to use results to improve care. Furthermore, these normally do not have objective validity, so their interpretation is subjective.2 Self-reported questionnaires are being used to gather information about patients’ health-related quality of life, health outcomes that matter most to patients with, experience of treatments, and perceptions on the care delivered by the healthcare team. Any initiative to improve the quality of care for patients requires robust instruments to capture patients’ perceptions of the healthcare that they receive. The experience of respiratory patients receiving home respiratory treatments, and their point of view on the quality of healthcare received, are not captured in currently available Patient-Reported Outcome Measures (PROM).3 Quality of care has been a priority for health professionals, but recent evidence identifies the patient experience as one of the pillars of quality care.4 Furthermore, patient experience is a key element for improving health care in the context of person-centered care.5 The patient experience is defined as all the interactions that occur between the patient and the healthcare system,6 within the framework of a specific organizational culture that influences the perception of the person served.7 A Patient-Reported Experience Measures (PREM) is a measure of a patient's perception of their personal experience of the healthcare they have received. PREM instruments should focus on the aspects of care that matter to the patient.8 PREM results can be used to improve services and provide a patient's view on these improvements that moves away from the technological or economic model that is often employed in service design. The evaluation that patients make of their experience using PREM focuses on the humanity of care9 and its value.4 Unlike satisfaction, the characteristics/events of patients interacting with the healthcare system are objectively assessed. Patient experience is more objective than patient satisfaction.8 Therefore, PREMs are tools that kind of photograph “what” happened in a patient-health system interaction and “how” it was from the patient's perspective.10 Moreover, PREMs have demonstrated positive associations with health outcomes.4 In the implementation of a PREM, it is also necessary to keep in mind that the ability to express emotions, opinions and facts is not distributed uniformly throughout the population.11

The patient experience has three dimensions: relational, functional and integrative. The relational experience refers to the interaction between the healthcare professional and the patient.12 This is the focus of most efforts to improve patient engagement and patient-centered care. Functional experience, or satisfaction with the result, refers to the immediate benefits perceived by patients at that moment.13 This does not cover medium and long-term benefits or patient outcomes. Finally, integration experience, or service integration, relates to the patient care experience, which crosses traditional silos.14 This is the approach of system-wide approaches.

Some PREMs have been developed focused on specific respiratory diseases such as chronic obstructive pulmonary disease (COPD),15,16 bronchiectasis,16 idiopathic pulmonary fibrosis (IPF),17 obstructive sleep apnea (OSA),18 or pediatric asthma.19 Some PREMs have also been developed for respiratory patients receiving home respiratory therapies.20 Although they are very useful instruments, their use does not allow cross-reference data within the same organization. However, to date there is no PREM that is specific to all respiratory disorders, with or without home respiratory therapy.

‘HowRwe’ is a generic, brief and simple PREM developed in 2009, following the criteria required for patient-reported quality of life measures.21,22 HowRwe is considered clear, brief, generic, suitable for frequent use, compatible with multiple forms of data collection, responsive and with good psychometric properties. Its first validation was published in 2014.23 The core premise of HowRwe is that all patients want high quality service both from staff and from the organization as a whole. Patient experience can be classified in terms of relationships with staff and system function.24

We aimed to determine the psychometric validation of the PREM ‘HowRwe’ in Spanish and for respiratory patients receiving home respiratory therapy.

Two hundred and twenty-eight participants were included in the study. 52.2% (n=109) were men. Mean age was 64.07 years (SD=13.2). Most of the participants were married or coupled (68.0%, n=155) and retired (56.6%, n=129). Regarding the diagnosis, 35.1% (n=80) were diagnosed with ILD, 28.1% OSA (n=64), 24.6% (n=56) COPD, 3.9% (n=9) NMD, and 8.3% (n=9) had other conditions, including CF, bronchiectasis and asthma. Regarding therapies, patients mostly used COX (oxygen therapy concentrator) and POX (oxygen therapy portable concentrator) (43.4%, n=99), CPAP (continuous positive airway pressure) (28.9%, n=66) and non-invasive ventilation (14.5%, n=33). More details are presented in Table 2.

Descriptive statistics of the Spanish version of the HowRwe scale, for both pre- and post-intervention, can be consulted in Table 3. All the values for univariate skewness and kurtosis for all the variables analyzed were satisfactorily within conventional criteria for normality (−3 to 3 for skewness and −10 to 10 for kurtosis), according to the guidelines suggested by Kline.26 Higher scores were found in item 3 and item 4, both in pre- and post-intervention, whereas lower values were presented in items 1 and 2. All of them were around 2.5, meaning patients’ experience was rated between good and excellent.

Reliability coefficients of the scale were adequate, with α=.921 and Ω=.929 for pre-test, and α=.940 and Ω=.958 for post. Items’ evidence of reliability showed adequate estimates of item-total correlations and reliability: item-total correlations were in the range of .81 to .83 in pre-intervention, and .85 to .87 in post-intervention, well above the acceptable minimum of .3032 and the removal of any of the items supposed a decrease in the reliability estimate of the scale (see Table 3).

The confirmatory factor analysis tested for both times, pre- and post-intervention, showed an excellent overall fit: χ2(2)=49.380 (p<.001), CFI=.941 and SRMR=.072; and χ2(2)=37.579 (p<.001), CFI=.982 and SRMR=.046, respectively. Regarding the analytical fit, models were also excellent: statistically significant factor loadings were found (p<.001), ranging from .87 to .88, and .92 to .93, in pre- and post-intervention times, respectively (see Table 3). In sum, the model with one factor was considered an adequate representation of the data.

Finally, we studied associations between pre- and post-test scores in the Spanish version of the HowRwe scale with sociodemographic and clinical variables. As shown in Table 4, no statistically significant relations were found between them and age, adherence or quality of life, except between HowRwe post-test and quality of life pre-test (r=.14 [.01,.26]; p=.035).

Regarding sex differences, no significant differences were found for pre-test (F(1, 224)=3.607; p=.059; η2=.016) or post-test (F(1, 224)=1.755; p=.187; η2=.008). Descriptive statistics on HowRwe scores for men and women are presented in Table 5. Regarding marital status, no differences were found, neither in pre-test (F(1, 224)=0.622; p=.601; η2=.008) nor in post-test (F(1, 224)=1.495; p=.217; η2=.020).

Because of the small sample size of NMD group (n=9), for the study of the relation between HowRwe scores and diagnosis categories were recoded. NMD patients were added to the “Other” category. With the recoded variable, an analysis of variance was conducted, pointing no statistically significant differences in pre-test (F(1, 224)=0.366; p=.778; η2=.005) and post-test (F(1, 224)=1.028; p=.381; η2=.014).

The effect of therapy on HowRwe scores was also studied. Again, because of the small sample size of some of the groups, we recoded COX, POX, Aerosol therapy and invasive ventilation into the new category of “Other”. When differences among therapies (including CPAP (n=66), COX+POX (n=99), non-invasive ventilation (n=33) and Other (n=30)) were studied, no differences in pre-test (F(1, 224)=1.314; p=.270; η2=.017) or post-test (F(1, 224)=0.376; p=.770; η2=.005) were found. Descriptive statistics for the different groups are shown in Table 5.

Finally, regarding the evaluation that patients made of the questionnaire, 85.6% found the content of the questionnaire “Very useful” or “Quite useful.” 98.6% rated the questionnaire as “Very easy to understand.” Regarding the length of the questionnaire, 98.7% found it “Very adequate” or “Quite adequate” because it is a short questionnaire. Regarding the time spent, 95.6% of the patients assessed that they needed “Very little time” or “Little time” to respond. Finally, when asked what would be the best way to respond to the questionnaire (channel), by main diagnosis, patients diagnosed with OSA responded that their preference was paper (37.5%) and app (31.5%). Patients with COPD prefer paper (71.4%), patients with ILD both paper (43.7%) and app (41.2%), patients with CF and bronchiectasis prefer email (42.1%) and patients diagnosed with NMD diseases prefer the app (44.4%), followed by email (22.2%) and SMS (22.2%).

The Spanish version of the HowRwe questionnaire to measure the experience of respiratory patients receiving or not home respiratory therapies, presents adequate psychometric properties and conceptual and semantic equivalence with the original English version. This study is the first approach to assess the self-perceived experience in respiratory patients in Spain with a specific questionnaire that includes multiple areas beyond satisfaction.

Among the benefits found when measuring the patient experience, we find the ability to improve the care circuit, ensuring that it is more effective and efficient. Including the patient perspective in healthcare systems is proven to be a crucial enabler for change, transformation and sustainability.33

It has been observed that health-related quality of life is related to the gap between our expectations of health and our experience of it.34 The perception of quality of life varies between individuals and is dynamic, and the experience with care influences our perception of our quality of life.35 In this validation study, a statistically significant correlation was found between the post-test experience and the pre-test quality of life. The intervention between the two measurement times (pre and post) has been the standard of care. Possibly this relationship found is explained, given a better state of quality of life, the experience with the service is better, due to the connection between the care plan and the quality of life. Although we have not found a relationship between bad experience and poor quality of life, this does not mean that patients can make negative attributions about their quality of life because their experience with care (not feeling heard, not being cared for when it is considered necessary) is bad.

Although some attempts have been made to measure the experience in respiratory patients,20,36 this is a PREM that can be used transversally to all respiratory conditions either with or without HRT. This allows comparison between the different consultations of the Pulmonology Department, and helps decision-making in order to improve the care plan individually (monographic consultation) and generally (the entire service). We are therefore faced with the first generic PREM validated for respiratory patients, with good psychometric properties and rated by patients themselves as simple and easy to apply. Its application allows it to be adapted to the patient's preferred channel so that it can be answered and thus facilitate its completion.

The measurement of the patient's experience with health care includes multiple aspects that may escape a questionnaire. The experience measurement process must include mechanisms that help understand the responses, and that allow the agreed actions to improve the experience to take into account the appropriate aspects. Although HowRwe is a questionnaire that covers three important areas (relational and organizational), there may be other factors that might escape patient follow-up.

Some limitations of our research might be considered. It has been validated in a single hospital, with a specific organization and a specific care circuit. It might be of interest to explore if the questionnaire is sensitive to different organizations, so it would demonstrate greater usefulness for comparing care models.

Although the aim of this study was to determine the psychometric validation of the HowRwe questionnaire in Spanish and respiratory patients, it would be necessary to know what occurs with each item evaluated in the real-world, in order to know and establish a guide for the use of this PREM in the improvement of services. In this way, we will be able to impact the quality of life of patients by providing care through a care plan that covers not only the patient's expectations, but also those of the service itself and the health professionals.

The PREM ‘HowRwe’ presents adequate psychometric properties in patients with respiratory disease with home respiratory therapies, with good reliability indices, both in the exploratory (Cronbach's alpha) and in the confirmatory (CRI). It is a questionnaire with a 4-point Likert scale, which the patient can complete quickly and which has shown good reliability and validity scores in psychometric tests. Acceptance by patients has been very positive, so it is expected that its implementation in the care routine will provide useful information to improve the patient care experience, since the questionnaire allows it to be used transversally among all monographic units of the Department of Pulmonology.

Julio Ancochea, David Rudilla and Pedro Landete have defined the study. David Rudilla and Pedro Landete have been in charge of the request for ethical approval of the study by the CEICm. Tamara Alonso, Elena García, Patricia Pérez, Claudia Valenzuela, Rosa Girón, Enrique Zamora and Pedro Landete have been in charge of presenting the study to the patients and inviting them to participate, as well as coding each response notebook. These authors have also participated in the revision of the first manuscript, as well as the necessary corrections in successive versions. The statistical analyzes have been carried out by David Rudilla and Laura Galiana reviewed by Julio Ancochea and Pedro Landete. The final version of the manuscript has been finished by Joan Soriano and David Rudilla.

The authors declare that no funding has been received for the completion of this study.

The authors declare that they have no conflicts of interest.