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Research Article

Investigating Patient and Family Satisfaction with the Respiratory Status in Patients with Chronic Obstructive Pulmonary Disease

ORCID Icon, , , , , , , , , , , , , , , , & show all
Pages 83-90 | Received 24 Oct 2020, Accepted 03 Jan 2021, Published online: 27 Jan 2021

Abstract

The current chronic obstructive pulmonary disease (COPD) management aims to improve the patients’ quality of life and healthy life expectancy; however, few studies have evaluated the level of satisfaction with the patients’ current respiratory status in COPD patients and their families. This study aimed to examine the level of patient and family satisfaction with the patients’ current respiratory status and to identify the clinical factors closely linked to dissatisfaction.

This multicenter, cross-sectional study included 454 outpatients with COPD and 296 family members. Patients and families were allocated to the satisfied and dissatisfied groups based on their satisfaction with the patients’ current respiratory status. Patients’ health status, dyspnoea, appetite, respiratory function, and mood disorders were assessed.

Among the participants of this study, 67% of patients and 60% of their families were dissatisfied with the patients’ current respiratory status. The COPD assessment test (CAT) was the most sensitive marker of dissatisfaction compared to other clinical factors (p < 0.01). The statistical cut-off value of CAT for predicting patient dissatisfaction was 11. CAT reflected patient dissatisfaction independent of age, sex, dyspnoea, appetite, mood disorders, body mass index, and respiratory function (odds ratio: CAT; 1.12 (1.07-1.19): p < 0.01).

Many patients and families are dissatisfied with the patients’ respiratory status, and the patients’ CAT score is useful to predict dissatisfaction. Our findings are consistent with the Global Initiative for Chronic Obstructive Lung Disease indicating that treatment should be enhanced in patients with a CAT score ≥10. Furthermore, treatment strategies targeting CAT may contribute to an improved patient satisfaction.

Introduction

Chronic obstructive pulmonary disease (COPD) is highly prevalent and a leading cause of death worldwide [Citation1]. In Japan, COPD was the eighth leading cause of death among men in 2015; however, age-adjusted mortality rates have recently declined; therefore, Japanese COPD patients may have a relatively long life expectancy [Citation2]. In clinical practice, COPD management should prolong the lifespan of COPD patients, improve their respiratory status, and promote a healthy life expectancy.

A small number of previous studies have evaluated the level of satisfaction in patients with COPD. Most of the previous satisfaction surveys in patients with COPD were related to the use of inhalational devices [Citation3, Citation4]. Other previous studies have assessed patients’ satisfaction with life [Citation5], whether patients are content with their treatment regimen [Citation6], patients’ satisfaction with their doctors’ care [Citation7], whether patients are content with their tele-rehabilitation program [Citation8], and whether patients are satisfied with the care they received at their hospital [Citation9].

Few studies have investigated whether patients and their families are satisfied with the patients’ respiratory status. By conducting a multicentre, cross-sectional study of COPD patients and their families, this study aimed to address the following three key questions:

  1. How satisfied are the patients and their families with the patients’ current respiratory status?

  2. What is the most significant factor associated with dissatisfaction among COPD patients and their families with the patients’ respiratory status?

  3. Do the patients and their families who are dissatisfied with the patients’ respiratory status wish to alter the treatment regimen?

Materials and methods

Study design and patients

This multicentre, cross-sectional study was conducted in Japan between November 2017 and May 2020. The diagnosis of COPD was made according to the Global Initiative for Chronic Obstructive Lung Disease (GOLD) criteria [Citation1]. The inclusion criteria were as follows: age ≥40 years, a smoking history, a post bronchodilator forced expiratory volume in the first second to the forced vital capacity ratio below 0.7, and those who were clinically diagnosed with COPD by a respiratory physician. The following exclusion criteria were also applied: acute exacerbation of COPD within 4 weeks, concomitant respiratory diseases other than COPD, concurrent active malignancy, and inability to read and understand questionnaires. Patients were also further excluded for the following reasons: the questionnaire could not be collected for various reasons (59 patients) and incomplete questionnaire (6 patients). This study included 454 COPD outpatients who visited a respiratory medicine outpatient department along with 296 family members. The closest family members considered by the patient answered the questionnaires. There were 158 cases where a family member did not participate. This was because the patient did not have any family or the family declined to participate. All participants provided written informed consent. The patients and families enrolled in this study could withdraw from participation at any time. This study was carried out in accordance with the Declaration of Helsinki guidelines and was approved by the ethics committee of Showa University School of Medicine (approval number: 2375) and by an independent ethics committee.

Questionnaire contents

The participants in this study were given a questionnaire, which was returned to the outpatient physician upon completion. The contents of the patients’ questionnaire aimed to evaluate how satisfied they were with their respiratory status using a 4-level Likert scale (satisfied, generally satisfied, want to improve a little, want to improve more). Patients who answered “satisfied” or “generally satisfied” were included in the satisfied group, whereas those who answered “want to improve a little” or “want to improve more” were included in the dissatisfied group. Regarding medication preferences, patients chose from the following three options: 1) “Stay”: I would like to stay on my current medications, 2) “Try”: I would like to try medications other than my current medications, and 3) “Leave”: I would like to leave it entirely up to my outpatient physician's discretion. Three patients were excluded from the analysis because they did not respond to the question on treatment preferences. The family’s satisfaction with the patients’ current respiratory status and family’s preferences regarding medications were also evaluated using a similar questionnaire. Of the total number of patients, the family members (n = 296) of the patients who answered the questionnaire were included in the study.

The patients’ health status was assessed using the COPD Assessment Test (CAT) [Citation10]. Dyspnoea was evaluated using the modified Medical Research Council (mMRC) dyspnoea scale [Citation11]. Appetite was measured using the Simplified Nutritional Appetite Questionnaire (SNAQ) [Citation12]. The Hospital Anxiety and Depression Scale (HADS)-Anxiety (HADS-A) and HADS-Depression (HADS-D) were used to assess mood disorders [Citation13]. The family member’s HADS score was also measured. A higher score for CAT, mMRC, HADS-A, and HADS-D indicated that the patients’ symptoms were more severe. A high SNAQ score indicated that the patients had a good appetite. The patients’ most recent respiratory function test results and body mass index (BMI) measurements were extracted from the clinical records.

Statistical analysis

All continuous variables were normally distributed with the exception of the CAT, mMRC, HADS-A, and HADS-D scores. Continuous variables were tested for normality with the Shapiro–Wilk test, and normal distributions were expressed as mean ± standard deviation, whereas the other variables were expressed as median and interquartile range. Differences among groups were analysed using the Student’s t test or the Mann–Whitney U test as appropriate. The χ2-test and Fisher’s exact test were used for categorical variables.

The area under the curve (AUC) was used to identify any clinical factors that influenced patient and family satisfaction, and differences between the AUCs values were compared using the DeLong test [Citation14]. The cut-off value for the optimal estimation of patient dissatisfaction was determined using the Youden Index. Logistic regression analysis was performed to identify clinical factors associated with patient dissatisfaction. Age, sex, and variables with statistical significance (p < 0.05) in the univariate analysis were selected as covariates for the multivariate analysis. Since HADS-A and HADS-D are very similar and anxiety in COPD patients carries a high risk of death [Citation15], only HADS-A was used in the multivariate analysis. All statistical tests were two-tailed and p-values <0.05 were considered to indicate statistical significance. All statistical analyses were performed using JMP Pro for Macintosh version 14 (SAS Institute, Cary, NC).

Results

Characteristics and satisfaction

This study included 454 COPD patients with a mean age of 74 years along with the family members of 296 COPD patients. The background data of the patients and families are presented in . This study found that 67% of patients were not satisfied with their current respiratory status. Furthermore, of the families questioned, 60% were not satisfied with the patients’ current respiratory status. In most cases, the participating family member was the patients’ spouse. The correlations between patient and family satisfaction are shown in . It was found that 22.6% of both patients and their families were satisfied and 47.3% of both patients and their families were dissatisfied.

Figure 1. Concordance rate of patient and family satisfaction.

Figure 1. Concordance rate of patient and family satisfaction.

Table 1. Characteristics of patients and families.

Clinical features of patients and their families

Compared to the satisfied patient group, the dissatisfied patient group had poorer CAT, mMRC, SNAQ, HADS-A, and HADS-D scores, a lower BMI, and a lower percent predicted forced expiratory volume in the first second (%FEV1) (). There were no significant differences between the two groups in age, sex, Brinkman Index, or inhaler component ().

Table 2. Characteristics of patients who are satisfied and dissatisfied with patients’ respiratory status.

The patients of dissatisfied families were found to have poorer CAT and mMRC scores and a lower %FEV1 than the patients of satisfied families (). Furthermore, the HADS-A scores of the dissatisfied families were poorer than those of the satisfied families (5.5 [3-8] vs. 4 [2-8], p = 0.03). There were no significant differences in patients’ age, sex, Brinkman Index, SNAQ scores, patients’ HADS-A and HADS-D scores, BMI, inhaler component, and the families’ HADS-D scores between the satisfied and dissatisfied groups ().

Table 3. Characteristics of patients’ families who are satisfied and dissatisfied with the patients’ respiratory status.

Comparison of influential clinical factors

This study compared the clinical factors that reflected patients’ dissatisfaction (). The highest AUC was observed for CAT (AUC 0.78; 95% confidence interval (CI), 0.74–0.82), which was higher than that for mMRC (AUC 0.70; 95% CI, 0.64–0.74), %FEV1 (AUC 0.65; 95% CI, 0.59–0.70), SNAQ (AUC 0.63; 95% CI, 0.57–0.68), HADS-A (AUC 0.59; 95% CI, 0.53–0.64), and age (AUC 0.52; 95% CI, 0.47–0.58) (p < 0.01). The statistical cut-off CAT value for predicting patient dissatisfaction was 11.

Figure 2. Receiver-operating characteristic curves presenting the satisfaction level of patients and their families. (A) Clinical factors that reflect patient satisfaction. Receiver-operating characteristic curves demonstrate the patients’ satisfaction with their respiratory status based on the chronic obstructive pulmonary disease (COPD) assessment test (CAT) and modified Medical Research Council (mMRC) scores, percentage predicted forced expiratory volume in the first second (%FEV1), Hospital Anxiety and Depression Scale–Anxiety (HADS-A) scores, and age. (B) Clinical factors that reflect family satisfaction. Receiver-operating characteristic curves demonstrate the family’s satisfaction with the patients’ respiratory status based on CAT and mMRC scores, %FEV1, patients’ HADS-A score, age, and the family’s HADS-A score

Figure 2. Receiver-operating characteristic curves presenting the satisfaction level of patients and their families. (A) Clinical factors that reflect patient satisfaction. Receiver-operating characteristic curves demonstrate the patients’ satisfaction with their respiratory status based on the chronic obstructive pulmonary disease (COPD) assessment test (CAT) and modified Medical Research Council (mMRC) scores, percentage predicted forced expiratory volume in the first second (%FEV1), Hospital Anxiety and Depression Scale–Anxiety (HADS-A) scores, and age. (B) Clinical factors that reflect family satisfaction. Receiver-operating characteristic curves demonstrate the family’s satisfaction with the patients’ respiratory status based on CAT and mMRC scores, %FEV1, patients’ HADS-A score, age, and the family’s HADS-A score

The clinical factors that reflected family’s satisfaction were also compared (). The highest AUC was found for CAT (0.73; 95% CI, 0.67–0.79), which was higher than that for mMRC (AUC 0.64; 95% CI, 0.57–0.69), %FEV1 (AUC 0.60; 95% CI, 0.54–0.67), HADS-A (AUC 0.56; 95% CI, 0.49–0.63), age (AUC 0.55; 95% CI, 0.48–0.61), and family’s HADS-A (AUC 0.57; 95% CI, 0.50–0.64) (p < 0.01). The statistical CAT cut-off value for predicting family dissatisfaction was 13.

Multivariate analysis based on age, sex, CAT, mMRC, SNAQ, HADS-A, BMI, and %FEV1 demonstrated that CAT, mMRC, and BMI were independent clinical factors associated with patient dissatisfaction (OR: CAT; 1.12 [1.07–1.19]: p < 0.01, mMRC; 1.48 [1.00–2.18]; p = 0.047, BMI; 0.91 [0.84–0.99]: p = 0.04) ().

Table 4. Univariate and multivariate analyses of clinical factors for patients’ dissatisfaction.

Patient and family treatment preferences

When the satisfied patients were questioned about inhalation therapy, 55 patients (36.7%) selected “Stay”, 1 patient (0.6%) selected “Try”, and 94 patients (62.7%) selected “Leave” (). Conversely, when the dissatisfied patients were questioned about inhalation therapy, 37 patients (12.3%) selected “Stay”, 24 patients (8.0%) selected “Try”, and 240 patients (79.7%) selected “Leave.” Patients’ preferences regarding inhalation therapy significantly differed between the satisfied and dissatisfied groups (p < 0.01) (). Between the satisfied and the dissatisfied family groups, there was a significant difference in the distribution of preference regarding treatment (p < 0.01) (). However, between the satisfied and dissatisfied patient groups, there was no significant difference in the family’s preference regarding treatment (p = 0.11) ().

Figure 3. Patient and family treatment preferences. (A) The Y-axis shows the patients’ preferences regarding inhalation therapy. (B) The Y-axis shows the family’s preferences regarding therapy. (C) The Y-axis shows the family’s preferences regarding therapy

Figure 3. Patient and family treatment preferences. (A) The Y-axis shows the patients’ preferences regarding inhalation therapy. (B) The Y-axis shows the family’s preferences regarding therapy. (C) The Y-axis shows the family’s preferences regarding therapy

Discussion

This study demonstrated that approximately 67% of COPD patients and approximately 60% of family members of these patients were not satisfied with the patients’ respiratory status. This study also demonstrated that CAT was strongly associated with the satisfaction of COPD patients and their families. The cut-off CAT value that significantly reflected patient dissatisfaction was 11. Finally, this study found that most dissatisfied patients and their family members wanted to follow the treatment plan put forward by the outpatient physician.

Although there are very few satisfaction surveys that have reported on the respiratory status of COPD patients, related studies have indicated that a smaller proportion of patients were dissatisfied with their current treatment [Citation6, Citation7, Citation16]. Discrepancies between previous studies and this study may be because the previous studies investigated medical treatment and treatment content, whereas this study focussed on respiratory status. Many dissatisfied patients who participated in this study responded, “I would leave my treatment entirely to my outpatient physician’s discretion.” If the question had been rephrased to “I am satisfied with the physician's treatment,” as in previous studies, the number of dissatisfied patients may have been more reflective of previous studies.

In this study, we found that CAT was the most sensitive marker of dissatisfaction for COPD patients and their family members. CAT is a clinical factor that reflects patients’ dissatisfaction independent of age, sex, dyspnoea, appetite, mood disorders, BMI, and respiratory function. CAT, which can be used in primary and secondary care [Citation17], is an excellent tool for the evaluation of health-related quality of life [Citation18], the prediction of acute exacerbation [Citation19], and prognosis [Citation20]. GOLD recommends intensive treatment for patients with a CAT score ≥ 10 [Citation1]. Interestingly, this study found that the cut-off CAT value that reflected the satisfaction of COPD patients most accurately was 11. Thus, the cut-off value identified in this study is consistent with the cut-off value recommended by GOLD. While GOLD proposes to determine the required treatment intensity using the mMRC alongside the CAT, this study found that the mMRC does not reflect satisfaction as accurately as the CAT. This result is consistent with that of a recent meta-analysis that reported that the CAT and mMRC should not be used as equivalents [Citation21]. It has been found that the CAT can help evaluate COPD patients more effectively than the mMRC because the CAT evaluates physical and psychological conditions multilaterally, whereas the mMRC evaluates only the degree of dyspnoea [Citation22]. This study has demonstrated that the CAT, which evaluates patients comprehensively, is more useful than the mMRC in terms of assessing the satisfaction of COPD patients and their families with the patients’ respiratory status. Although there are a few studies that have examined the COPD family [Citation23, Citation24], this is the first study to evaluate the satisfaction level of family members of COPD patients. This study found that the patients’ CAT score is also the most accurate reflection of the family’s satisfaction level. This indicates that the satisfaction of the family, as well as that of the patients, is mostly dependent on the patients’ health-related quality of life.

This study showed that preferences regarding medications differed significantly between the satisfied and dissatisfied groups of patients and their families. However, this study also demonstrated that approximately 80% of patients and families reporting dissatisfaction left the treatment entirely to the physician. This finding suggests that patients and families are unlikely to ask their doctors to change or strengthen patients’ treatment, even if they are dissatisfied with the patients’ current respiratory status. Thus, physicians must actively seek out dissatisfied patients to improve their level of satisfaction. The CAT can be used to improve the quality of patient-physician communication [Citation18]. Furthermore, patient satisfaction levels can be improved by aiming for a CAT <11.

This study had three limitations. First, all of the study participants were secondary and tertiary care patients; thus, the findings of this study cannot be extended to primary care patients. Second, as in previous studies addressing this issue [Citation16], the completed questionnaires were handed directly to the attending physicians; therefore, it is possible that the patients and families may not have responded honestly in all cases. Third, the questionnaires used in this study to assess respiratory status satisfaction and preferences regarding medications have not been validated in the past. In addition, we examined the overall patient and family satisfaction with the respiratory status but did not perform a evaluation of detailed respiratory status satisfaction, such as respiratory symptoms, copying with daily activities, and impact on patients’ life.

Conclusions

This study found that many COPD patients and their families are not satisfied with the patients’ respiratory status. The clinical factor that most accurately predicts patient dissatisfaction is the patients’ CAT score, which has a statistical cut-off value of 11. The findings of this study are consistent with the treatment strategy proposed by GOLD indicating that treatment should be enhanced in patients with a CAT score ≥ 10. Furthermore, treatment strategies targeting CAT may help improve patient satisfaction in clinical practice.

Acknowledgements

The authors are grateful to all patients and their families that participated in this study. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Conflict of interest

The authors declare no conflicts of interest associated with this manuscript.

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