Patient Knowledge in Chronic Obstructive Pulmonary Disease: Back to Basics

Abstract

Patient education is integral to the care of patients with chronic obstructive pulmonary disease (COPD), and a cornerstone of self-management in chronic illness. We aimed to assess information needs and knowledge of patients with COPD. The Lung Information Needs Questionnaire (LINQ) and The Mount Sinai Hospital Questionnaire (MSHQ) were used. The LINQ identifies what COPD information the patient has, or is lacking. Higher scores in the LINQ define a greater information need. The MSHQ assesses a patients’ COPD knowledge. Higher scores in the MSHQ questionnaire indicate greater knowledge. Subjects, in (n = 38) and outpatients (n = 43) were aged (mean ± SD) 69 ± 9 years, 53% were women, and 36% had not completed high school. COPD was diagnosed 9 ± 7 years previously. Forty percent had recalled receiving specific COPD education. Mean forced expiratory volume in 1 second (FEV₁) was 1.1 ± 0.6 Liters. Patients on average had a 29 ± 14% need for information as assessed by the LINQ. Patients indicated a 52 ± 34% need for information on diet and 43 ± 25% for self-management. The mean total score for the MSHQ was 71 ± 13%. The score on treatment was 76 ± 20% and 60 ± 14% on pathophysiology. There was a positive relationship between having prior COPD education, finishing high school and total MSHQ score (p< 0.05) and a positive correlation of prior COPD education and reduced LINQ total score (p < 0.01). Patients with COPD have received information and demonstrate some knowledge about their disease. However, there remains a need for more education on diet and self-management.

Keywords: :

• Education
• knowledge
• chronic obstructive pulmonary disease
• self-management

INTRODUCTION

Chronic obstructive pulmonary disease (COPD) is a disabling chronic illness that may produce a negative spiraling effect on breathing and quality of life (1,2). Many treatment strategies are available to COPD patients and have proven effective in the management of symptoms and can also improve a patient's quality of life (3–5). Drugs such as combined long-acting bronchodilator and steroid inhalers, as well as long-acting anticholinergic medication are the mainstay of current pharmacotherapy (6,7).

Non-pharmacologic treatment modalities such as smoking cessation strategies, pulmonary rehabilitation, and nutritional counseling are all vital to patient care in COPD. One of the greatest challenges in health care is educating and enabling patients to understand and implement these various interventions. In particular, self-management programs with use of a defined action plan and a case manager have been shown to enable patients with the reduction of emergency visits and hospital admissions. The teaching and use of an action plan in circumstances when respiratory symptoms worsen have been shown to diminish the severity of exacerbations as well as shorten time to recovery (8–12).

If patients are to better participate in self-management programs and utilize action plans effectively they must understand their illness and its treatment. The aim of the present study was to assess the knowledge base and information needs of patients with COPD. We compared knowledge and information needs between inpatients and outpatients.

MATERIALS AND METHODS

Subjects were recruited on admission from the inpatient ward at Mount Sinai Hospital and the outpatient pulmonary departments of Mount Sinai and Jewish General Hospitals, Montreal, Canada. This study was approved by the Research and Ethics Committees at both hospitals. Patients with a diagnosis of COPD were included. There was no exclusion due to age, severity, or time since diagnosis. Patients who had received pulmonary rehabilitation within the previous year were excluded. Information was collected on the subjects’ age, gender, level of education, smoking history, and pulmonary function.

Following informed consent, two self-administered questionnaires were completed by each patient. The Lung Information Needs Questionnaire (LINQ) is a validated self-complete, tick box questionnaire with 16 questions that requires an average of 6 minutes to complete (13–15). Each question has a multiple choice format, and these are scored so that 0 = no information need with increasing numbers corresponding to an increased level of need (the number of response choices varies between questions).

The scores are summed for each domain and for the total score. There are 6 domains each with its own range of scores; disease knowledge (0–4), medication (0–5), self-management (0–6), smoking (0–3), exercise (0–5) and diet (0–2). The higher the score the greater the information need of the respondent. The total or global score (sum of all items, scores vary between 0 and 25) of the LINQ questionnaire provides an overview of the patient's information need and the individual domain scores identify the specific information needs.

The second questionnaire was developed at Mount Sinai Hospital and has been administered previously at the hospital to patients with COPD (16). The Mount Sinai Hospital questionnaire (MSHQ) includes questions in three domains, lung anatomy and function (8 questions), pathophysiology of COPD (11 questions) and treatment (8 questions). It was validated concurrently in both French and English with examination of content validity by interdisciplinary health professionals and immediate comprehension of all questions by patients with COPD. It measures different aspects of knowledge with respect to COPD compared to the LINQ; with low total score correlation of -0.10. The three domains of the MSHQ correlate significantly with the disease knowledge and smoking domains of the LINQ with r values of -0.12 to -0.25. The LINQ assesses information needs and scores lower in patients who have more knowledge as opposed to the MSHQ which scores higher in patients who have greater knowledge. The English and French versions can be found as a supplement to this article.

Statistical analysis

Descriptive statistics (means, standard deviations (SD), counts and frequencies in percent) were used to present patients’ baseline characteristics. Pearson correlations were also performed to evaluate the relationship between baseline variables and outcomes. Statistical significance was declared at the two-sided 0.05 level.

RESULTS

One hundred and thirty-one patients were screened for the study. A total of 37 patients refused to participate due to lack of time or interest, and 8 were excluded due to language or eyesight issues. Five individuals were excluded because they had participated in a pulmonary rehabilitation program within the prior year. Of the 81subjects who participated, 53% were women; 46% were recruited as stable inpatients not requiring acute care and were studied before commencing a pulmonary rehabilitation program. The remaining subjects were recruited from the outpatient clinics.

The mean age (SD) of the cohort was 69 (9) years and pulmonary function tests indicated moderate to severe obstruction (Table 1). Only 12% of patients were still smoking with an average (SD) smoking history of 47.5 (25.3) pack-years. Fifty percent of subjects recalled having received some prior education about their illness from someone other than their primary physician or specialist. Six subjects reported having participated in a pulmonary rehabilitation program more than a year prior to recruitment. Sixty-four percent of patients had completed a high school education.

Table 1  Baseline characteristics and pulmonary function

Characteristics, n = 81
Mean age (SD)	69.1	(9.1)
Women, count (%)	43	(53)
Mean body mass index (SD), kg/m^2	27.3	(6.8)
Finished high school education, count (%)	50	(64)
Prior COPD education, count (%)	40	(50)
Mean No. of years since diagnosis of COPD, (SD)	9.5	(7.3)
Current smokers, count (%)	10	(12)
Mean Smoking history (pack-years), (SD)	47.5	(25.3)
Mean FEV1 L, (SD)	1.0	(0.6)
Mean FEV1% predicted, (SD)	45	(23)
Mean FVC, L, (SD)	1.9	(0.8)
Mean FVC% predicted, (SD)	65	(25)
Mean FEV1/FVC, (SD)	59	(16)

Responses on the LINQ

The results of the questionnaires are seen in Table 2. The outcome of the LINQ questionnaire indicated that patients were generally well informed with only an average need for more COPD information of 29% and those needs ranged in individuals from no need to a 64% need (Table 2). As judged by the LINQ domain scores the greatest need for information was in the area of diet and self-management.

Table 2  Results of the Lung Information Needs Questionnaire (LINQ) and the Mount Sinai Hospital Questionnaire (MSHQ)

LINQ	Inpatients	Outpatients	Range%
Diet	57	46	0–100
Self-management	43	42	0–100
Disease knowledge	39	40	0–100
Exercise	29	27	0–80
Medicines	14	7.0	0–60
Smoking	3.0	6.3	0–33
Total lung information need	30	28	0–64
MSH knowledge questionnaire	Inpatients**	Outpatients	Range%
Treatment of COPD	76	75	25–100
Lung anatomy function	69	72	38–100
Pathophysiology of COPD	62	58	27–100
Total score	71	69	35–96

Values indicate domain percentages. Comparisons between groups on all domains showed no statistically significant difference (p more than 0.05).

*Higher scores indicate greater information need.

**Higher scores indicate greater knowledge.

Patients recalled lacking information on diet as indicated by a mean total score of 52 ± 34%. Answers to diet questions revealed that patients should have been informed that eating small meals throughout the day is recommended but only 20% had received that information. Although 57% of patients had been told to either lose or gain weight and eat healthy, 23% had not received any information regarding diet. On average, patients had a 43% need for more information in regards to self-management. In answer to the question “what have you been told to do if your breathing gets worse?” 11% of patients had been advised what to do and had it written down, while 51% responded “I have been told but it is not written on paper.” Thirty percent of subjects had not been told and were uncertain as to when to call an ambulance if their breathing got worse. Patients’ disease knowledge was also lacking, with 14% of respondents not knowing the name of their respiratory disease, and 48% indicated that a nurse or doctor had not given them information concerning “what is likely to happen in the future.” Furthermore, only 23% acknowledged that “I will get worse in the future.” In response to exercise questions, most patients (86%) reported they had been told by a physician or nurse to do some physical activity. Fifty-three percent said they “made an effort,” while 37% “pushed themselves as much as they could.” Only 10% said they did “as little as possible.” Overall, patients felt they received adequate information on their COPD medicines with only 11% indicating a need for more education (range of 0–60%) and 5% reported “I am slightly confused about my medicines.” Results from the smoking questions revealed that 12% of subjects were still smoking, and 99% of those still smoking had been “advised to give up smoking” and were “offered help to give up smoking”.

Responses on the MSHQ

Overall, patients had a mean total score on the MSHQ of 71 ± 13%; this suggests that patients have a good general knowledge base. On the MSHQ subjects scored highest on the COPD treatment questions (76 ± 20%). Seventy-two percent of patients reported they were using salbutamol and 78% were using tiotropium. Seventy-nine percent of patients knew that these drugs were “designed to: only open (dilate) the bronchial tubes.” There were 24 and 40 prescriptions for budesonide/formoterol and fluticasone/salmeterol, respectively, and 80% knew that these drugs were mainly designed “to reduce lung inflammation and open airways.”

When patients were asked to answer questions on simple concepts of lung anatomy and function, overall they scored correctly on a mean of 71 ± 13%. Ninety percent of patients knew that “respiratory rate and heart rate increases during exercise,” but 70% thought that “shortness of breath is always caused by a lack of oxygen.” Patients demonstrated a poor understanding of COPD pathophysiology with a mean domain score of 60 ± 14%. Although almost all patients (96%) knew that the “leading cause of COPD is cigarette smoking”, 34% thought that COPD was exclusively a hereditary disease. Only 40% of patients thought that “pulmonary function tests (breathing tests) were the best way for your doctor to tell if your lung disease is worse,” and 80% knew that “regular exercise may help to reduce shortness of breath with activity.” Seventy-one percent of subjects thought that “most patients with COPD will eventually need oxygen.”

Correlations with Baseline Measurements

Patients who completed at least high school usually recalled having a COPD educational session. These patients scored higher on the MSHQ (p < 0.05) and a positive correlation was demonstrated between prior COPD education and reduced LINQ total need for information (p < 0.01). There was no correlation between the number of years since diagnosis of COPD, smoking history, pulmonary function or other baseline measures and scores in either questionnaire (p > 0.05).

Comparison of In-patients and Out-patients

When comparing the inpatients to outpatients, we found that outpatients were significantly older (71.9 ± 8.4 versus 66.5 ± 8.8 years), had a longer standing diagnosis of COPD (11.3 ± 9.0 versus 7.0 ± 6.8 years), and significantly better pulmonary function (FEV1 1.3 ± 0.6, predicted 54.3 ± 21.0 versus FEV1 0.8 ± 0.4, predicted 36.4 ± 19.9) p< 0.01. Although some of these baseline characteristics differed between in and outpatient groups, they had similar levels of education. A similar number of individuals in both groups also recalled receiving disease specific education, and had similar scores on all components of either the MSHQ or LINQ questionnaires (Table 2).

DISCUSSION

This study revealed that most patients with moderate-to-severe COPD admitted to hospital, or attending outpatient pulmonary clinics have received some information about their disease from a nurse or doctor and appear moderately knowledgeable about their chronic condition. Data collated from two self-administered questionnaires provided clear results that COPD disease specific knowledge and information needs were variable.

Knowledge on specific domains such as pharmacotherapy had been provided and was relatively well retained by patients. Overall patients tended to have a strong understanding of the purpose of pharmacotherapy, which drugs they were taking and their basic function. Interestingly these results were similar between inpatients and outpatients even though the outpatients were older and had been informed of their chronic disease for a greater number of years.

There was an expressed need for more information and a clear knowledge gap identified in salient self-management strategies. This included the need for a written action plan in case of worsening symptoms, whereby only 11% of patients stated that they knew what to do during exacerbations and that this information was written down. This is important in view of health care investment in current self-management programs. In Canada a recent survey in nearly 400 patients with COPD evaluated patient knowledge as well as attitudes (2). Sixty percent indicated that their COPD education came from a health care worker, but only 5% of those health care workers were considered lung specialists. More interestingly, almost 50% reported they had acquired much of their information from the internet, reading materials and television.

Several important chronic disease and self management models have emphasized the need for patient knowledge as a cornerstone for appropriate behavior leading to better outcomes. An example of such a “precede/procede” model is that developed by Green and colleagures (17). In the past decade more attention has been focused on the multi-faceted, multi-dimensional models of education (18). These models aim to incorporate psychosocial skills, behavior modification, and self-efficacy which help support patient education translating into persistent and meaningful clinical and behavioral benefit (19,20).

The implementation and monitoring of self-management skills remains a work in-progress, as demonstrated by the need for more basic information well into the years of living with COPD. Practitioners must be vigilant in re-evaluating knowledge gaps, re-enforcing concepts, and giving patients written action plans. These strategies are strongly supported in the American and Canadian Thoracic Society guidelines (6,7,21).

Another important observation from this study concerns the lack of information on nutrition and body weight. In our study population the need for more information on diet was high, it was noted that many patients had not been informed to lose or gain weight when appropriate. Significant weight loss in patients with COPD is associated with negative outcomes (22). Knowledge and dietary changes can confer benefit for some patients for example from the use of nutritional supplements with exercise as well as the increased consumption of fruits and whole grains (23,24).

Before the development of the LINQ questionnaire, no standardized assessment tool existed to evaluate needs and knowledge deficiencies in COPD patients. Previously, a study by Netzer and colleagues used an open-word question design to elicit information from patients concerning the knowledge they had acquired after an intense program of disease education (25). One major drawback of the questions posed was that they were more relevant to asthma and not COPD. Few have attempted to develop a questionnaire such as the LINQ, which is based on patient experience, knowledge, understanding and needs.

White and colleagues designed and tested the Bristol COPD knowledge Questionnaire, which is a series of iterative questions formulated primarily by health care workers directly involved in education (26). At each step a small number of patients were asked to judge the questionnaire and they found it to have good content and face validity. The topics covered in the questionnaire were physiology, common symptoms, medications, etiology, exercise and diet. Hill and colleagues used the Bristol COPD knowledge questionnaire to demonstrate that patients receiving only 2 hours of education per week compared to controls had a significant improvement in objective measures compared to the control group (27).

This suggests that brief educational interventions alone can provide some disease related learning. It does however raise the question of how long this recall or learning remains as studies generally only look at the short-term responses. The LINQ was developed for the assessment of lung information needs in COPD patients. Jones et al. studied 158 patients with COPD attending various pulmonary rehabilitation programs and measured knowledge needs before and after their respective programs using the LINQ. Although the patient populations between Jones’ study and our study were somewhat different, patients in both studies were lacking information in the same two categories, diet and self-management. In spite of improvement in self-management knowledge after formal pulmonary rehabilitation, a third of patients were still unclear as to when to call for an ambulance.

Limitations

A limitation that became apparent during recruitment was that some patients were excluded due to the fact that they did not speak, read or write in English or French. This suggests that a proportion of patients with COPD may have deeper barriers to learning that may need to be addressed. Another limitation may be that the study sample was too heterogeneous with patients varying in their duration of illness, academic background and prior COPD education. Some patients were attending an outpatient clinic, while others had been admitted for pulmonary rehabilitation. Nevertheless, our population sample is likely representative of the variety of patients seen in common respiratory clinical practice.

In conclusion, the present study emphasizes that COPD patients require more education in self-management strategies and that health care providers need to continue monitoring and re-enforcing patient education. Because most patients with COPD are cared for by family physicians, educational programs should be tailored for use in these settings (28). The priority of education should be to provide information to patients early in the course of their disease with the goal of long-term changes in self-management. These acquired knowledge and skills should be reinforced and assessed at regular intervals. Future studies will determine the degree to which improved patient awareness and understanding can influence the natural course and outcomes in patients with COPD.

DECLARATION OF INTEREST

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

ACKNOWLEDGMENTS

The authors acknowledge the participation of patients in this study and thank the research fund of Mount Sinai Hospital Center for its continued support.