Patient education for individuals with Interstitial Lung Disease: A scoping review.

Formulating the research questions

The specific research questions were as follows:

Locating relevant studies

We undertook a comprehensive PubMed and Scopus literature search to identify studies describing the PE provided for patients with ILD. Inclusion criteria consisted of studies including patients with ILD (aged > 18 years) referred for PR in any health care setting. The PR sessions have to be inclusive of PE administration using either booklets, leaflets, websites, mobile applications or verbal/practical demonstration. Articles published in English from inception to 2020. The content of the PE (topics addressed, different processes of the PE intervention, location of delivery, mode, who delivered PE, and technique of delivery), provided through a pulmonary rehabilitation program. Types of sources: Any type of research design, such as quantitative, qualitative, or mixed methods were included in the study. Articles written in languages other than English, editorials and commentaries were excluded.

Search strategy: Initially, a PubMed and Scopus search was undertaken, followed by a screening of the titles and abstracts of retrieved papers, as well as the search terms utilized to describe them. A thorough search was then conducted across all of the involved databases utilizing all identified keywords and index terms. In order to locate more pertinent sources, the reference lists of the included papers and reports were examined as well. Grey literature from databases and conference proceedings was also investigated, and duplicate publications were found and eliminated. The titles and abstracts of articles were examined to determine whether they met the inclusion criteria. If an article satisfied the criteria or needed further review before being excluded, its full text was retrieved. A third reviewer (AM) resolved any differences between the two independent reviewers' (RA and VK) assessments of whether the full-text paper fulfilled the inclusion criteria. Using specific terms for each database, the search on PubMed and Scopus concentrated on the three main ideas of ILD, physiotherapy, and patient education (PE).

Search terms

“Idiopathic pulmonary fibrosis” OR “IPF” OR “pulmonary fibrosis” OR “fibrosis” OR “ILD” OR “interstitial lung disease” OR “lung disease” OR “pulmonary disease” AND “physiotherapy” OR “physical therapy” OR “physical training” OR “physical rehabilitation” OR “pulmonary rehabilitation” OR “pulmonary rehabilitation training” AND “health education” OR “patient care” OR “self-management” OR “health communication” OR “health behaviour” OR “PE” OR “booklets” OR “pamphlets” OR “leaflets” OR “brochures” OR “handout” OR “flyer” OR “electronic educational materials” OR “web-based education” OR “tele-rehabilitation” OR “telerehabilitation” OR “telehealth” OR “telerehab” OR “mHealth” OR “telecare”.

Identifying the studies

Following the initial screening, 14,727 articles were evaluated through assessing their titles and abstracts against established inclusion and exclusion criteria. When one reviewer (RA) was unsure whether to include or exclude an article, it was independently reviewed by another reviewer (VK). 355 articles were subsequently found to be eligible for full-article review. The 355 papers were then evenly allocated alphabetically between the two reviewers (RA and VK). Each full text article was thoroughly reviewed against the inclusion and exclusion criteria implementing the PRISMA extension for Scoping Reviews (PRISMA ScR) flow approach.²⁷ (Figure 1)

Figure 1. PRISMA Flowchart.

Organising and extracting data: To organize the data collected systematically, a data extraction form was developed. This form consisted of a table with predefined categories that corresponded to the scoping review's objectives and research questions. These categories included information about the author, year of publication, country, study design, sample size, the content of the PE, processes of delivery, effectiveness (outcomes). The data from each article was documented in these specific categories for a thorough analysis. (Table 1–3)

Summarizing and presenting the results

The information was collected and summarised for extraction and the results were recorded in the same framework we developed for analysis.

A total of 13 articles were included in the scoping review. (Table 1–3) There was 1 single group intervention pre-post pilot study design,²⁸ 2 systematic reviews,^29,30 1 non-RCT (prospective study),³¹ 5 qualitative observational studies,^32–36 4 review articles.^37–40 (Figure 2)

Figure 2. Demographic characteristics for study designs.

All the studies described multiple PE topics. The most commonly discussed educational topics included: pathophysiology of ILD (1),³⁵ clinical tests (1),³⁵ managing breathlessness/dyspnoea (3),^33,35,36 managing cough (3),^33,35,36 managing fatigue (3),^33,35,36 managing flare-ups (2),^33,36 prognosis (1),³⁵ managing anxiety, panic and depression (2),^33,36 using supplemental oxygen (3),^33,35,36 using ambulatory oxygen (1),³⁶ using nocturnal oxygen (1),³⁶ regular vaccination (2),^33,36 managing medications and side-effects (3),^33,35,36 good nutrition (1),³³ managing co-existing medical condition (1),³³ accessing home care and support for both patients and caretakers (3),^33,35,36 smoking cessation (1),³³ symptoms of gastroesophageal reflux disorder,²⁹ adherence,²⁹ end-of-life acre and advanced directives (4),^33,35,36,40 valued education regarding pulmonary rehabilitation (3),^32,33,34 importance of exercises (3),^32,33,34 discussion over ILD specific topics (1),³⁶ autonomy (1).³⁶ (Figure 3)

Figure 3. Components for patient education identified in literature for individuals with ILD.

5 studies identified the involvement of health practitioners such as nurses (2)^34,35 pulmonologists (3),^32,33,36 kinesiologists (1),³⁴ respiratory physicians (2),^32,36 physiotherapists (4),^29–32 and rheumatologists (2),^32,36 in delivering PE to patients with ILD. A few studies (3) also mentioned the need for involvement of bystanders and caregivers in the PE sessions along with patients with ILD.^28–30 (Figure 4)

Figure 4. Involvement of healthcare professionals identified in PE programs for Individuals with ILD.

Process of delivery:

PE was found to be implemented in a variety of settings including outpatient settings, outpatient supervised PR programs, inpatient PR programs, primary healthcare centers, and acute care units.^29–31 However, none of the studies mentioned use of PE as a part of the treatment program for ILD patients.^29–31

Qualitative findings:

The majority of the articles included in the scoping review were qualitative study designs.^32–36 These study designs aimed at highlighting the core topics and themes required for the development of educational booklets concerning the patient point of view.^32,33 These studies describe the interests of the patients, their understanding about the disease and brought to light their expectations from the physicians and healthcare professionals with respect to the disease by qualitatively analyzing their perspectives via focused groups and in-depth interviews.^32–35

Most of the qualitative studies were conducted either by a face-to-face communication,^32–35 via a telephonic interview,^33,34 website surveys,³⁶ questionnaire prescription³⁴ to design the components of PE in ILD for patient centred approach. Interviews were conducted with patients to collect sociodemographic information; this information included their management of ILD (e.g., drug therapy, specialist input, acute ILD exacerbations), satisfaction with the overall handling of their disease, medication profile, and travel costs.^32–36 Holland AE et al., in a qualitative review enlisting core topics essential for inclusion in the PE program for ILD patients stating the need for ILD specific PE packages for patients.³³

Delivery technique:

A few studies mentioned prescribing PE orally as a part of the rehabilitation or treatment program, although content was not disclosed.^30,31 A few mentioned the use of websites such as Pulmonary Fibrosis Foundation (www.pulmonaryfibrosis.org), (https://www.ofev.com/support/open-doors; https://www.esbriethcp.com/ipf-patient-assistance/patient-education-inspiration.html), web-based information booklet²⁸ for delivering PE among ILD patients and caregivers specifically.³⁷

Effectiveness (Outcome measures):

None of the articles used PE-specific outcome measures. But for their overall study objectives, they used different outcomes measures.^28,29,30,34

Quality of life:

Niemitz M et al., (2019) used self-reported scales to rate self-efficacy, scales for patients and caregivers to rate health-related quality of life (chILD-QOL), satisfaction with PE.²⁸ The majority of the studies used disease-specific, health-related quality of life tools as an outcome measure. Scales such as St. George Respiratory Questionnaire (SGRQ),^29,30 Chronic Respiratory Disease Questionnaire (CRQ),^29,30 Short Form- 36 (SF-36),^29,30 King’s brief Interstitial Lung Disease questionnaire (K-BILD),³⁵ University of California, Shortness of Breath Questionnaire (UCSD SOBQ),³⁵ International Physical Activity Questionnaire (IPAQ),³⁰ A Tool to Assess Quality of Life in Idiopathic Pulmonary Fibrosis (ATAQ IPF) scores,³⁰ Idiopathic Pulmonary Fibrosis (IPF) specific SGRQ scores.³⁰

Physical status, dyspnoea, lung function:

Authors have used indicators such as 6 MWD to determine ILD patients' physical status.³⁰ For dyspnea stages, Beck’s Depression Inventory (BDI),³⁰ and Modified Borg Scale (MBS)³¹ were used. For the assessment of performance indicators, spirometric indicators like Forced Vital Capacity (FVC), Forced Expiratory Reserved Volume in 1 Second (FEV1) and diffusing capacity of lung of carbon monoxide (DLCO) were used.³⁰

In patients with ILD, PE is an integral component of care. Before beginning, a physiotherapist has an overall objective or goal for PE. The learning objectives for knowledge acquisition, solving problems, learning skills and behavioural change can be helpful. The method used could be visual and realistic, including demonstrations.^29,30 The physiotherapist would evaluate when and where to incorporate PE during rehabilitation.^32,34–36

About the disease

In line with the research questions laid down by us in our review, the first question focuses on the contents (topics) of PE provided for patients living with ILD. Patients require healthcare professionals to devote time with them after diagnosis, as highlighted by the studies included in this scoping review.^29,30,40 The patients with ILD should be given with a brief introduction regarding the disease and its course. They should be provided with an insight of what happens to the lungs because of the disease, various triggers, irritants and causes of ILD. They should be given a brief knowledge about the signs and symptoms, situations during exacerbations and how to manage them.^29,30,32,40

Management

A multidisciplinary approach towards treating ILD patients is of utmost importance concerning managing the disease course. This involves the participation of the healthcare team, the patient themselves, and their caregivers.^28,29,36,39 PE must include awareness regarding the medications prescribed their effects on the body systems. Reactive oxygen species are responsible for tissue damage in ILDs, despite the fact that oxygen deficiency also occurs in these circumstances. Recognizing the significance of reactive oxygen species offers novel opportunities for therapeutic intervention.

Reference 41 Supplemental oxygen is one such component the patient should be made aware about. Since patients frequently receive oxygen therapy at home, the findings in this review recommend that patients should obtain PE regarding oxygen dosage and concentration during exacerbations and before engaging in strenuous activities. A large subgroup of people with ILD are normoxic at rest but rapidly desaturate on exertion. This can limit exercise capacity and worsen dyspnoea. When mobilizing or doing other tasks, using ambulatory or short-burst oxygen may help enhance exercise capacity and relieve dyspnoea.⁴³ Including a discussion of these concepts within the PE approaches both via face-to-face discussions by the pulmonologist, rheumatologist, immunologist, physiotherapist, and the staff nurses and reiterated in a written form using booklets or flyers is essential. Oxidative stress, which results from exposure to oxidizing agents including cigarette smoke, air pollution, and infections, has been linked to a variety of lung conditions. Therefore, the onset or advancement of these diseases has been linked to dietary components and nutrients that may have protective effects against oxidative processes and inflammatory reactions.

A dietician should be involved for discussion regarding the various areas the patients can reach out to and maintain and help establish an individualized diet plan for better living.

Exercise intolerance is an essential feature of ILD associated with poor quality of life and closely linked to mortality. Given the well-documented short-term effects of PR on lung function, quality of life, and improvements in activities of daily living, PE resources must emphasize the necessity of assessment and the advantages of exercise throughout the disease's course. Dysnoea and fatigue are key debilitating factors experienced by patients with ILD. The physiotherapist should spend time with the patients in educating them about the evaluation of the factors causing dyspnoea and fatigue and the non-pharmacological solutions to those problems which eventually affect the ADL’s and functional abilities of ILD patients.^32,34,35,36 In the studies included in this review, there must be a possible overlap between PR providers, which is likely to lack specificity.

There is lack of clarity regarding the contents of PE delivered to the patients with ILD by the physiotherapists. Individual perception of the patients, such as dyspnea, depression, and health-related quality of life (HRQoL), is more strongly interrelated. Consequently, the management of dyspnea and depressive symptoms could be an essential tool for optimizing the HRQoL of patients with ILD. Self-care is one such component that needs to be addressed to overcome exacerbations. Patients need to be briefed about the various techniques that can be used to self-manage their symptoms when in times of need.¹¹ There is no clear perspective in the current literature regarding the management of mental health among ILD patients. There is a lack of evidence and clarity regarding who provided the PE to the ILD patients and the duration spent doing the same in literature. Also, the effect of PE post-intervention on follow-up has not been addressed in any of the available literature. Outcome assessment tools need to be established for PE in ILD to know the knowledge of PE retained by the patients and its effects on their quality of life during follow-up.

Process of delivery:

In line with the research questions laid down by this review, the second question focuses on processes or methods used when providing PE to patients living with ILD. According to the content gathered from literature, various modalities of PE delivery to ILD patients can be used. There is lack of clarity regarding the process of PE delivery among ILD patients.

As of other chronic respiratory diseases, PE in ILD can be delivered verbally by the multidisciplinary healthcare team during their follow-up visits.^30,31,44,45 PE delivery through cutting-edge technology such as telerehabilitation allows the entire multidisciplinary team to collaborate and discuss the patient's whereabouts and caregiver involvement.⁴⁶

In contrast to other chronic respiratory disorders, PE can be delivered in ILD using a web-based platform that employs an innovative and digital design.^28,37 To communicate the contents of PE, healthcare practitioners can use instructional manuals, brochures, handouts, and other materials.^29,30 This can make the process easier as it becomes convenient for the patients and refer to the contents whenever possible. Educational booklets and handouts can also be a fantastic resource for disseminating PE knowledge in a diverse country like India, where there is a shortage of social-based platforms and smartphone use among individuals living in rural and remote sections of the country where internet penetration is very low. Educational booklets can be made exciting and understandable to the local population with the optimal use of illustrations, making it self-explanatory. By include progress/log charts in the booklet, we can keep track of adherence. Booklets can be a source to track, evaluate, and grade the performance for further progression.

Limitations

During this scoping review, we identified significant diversity in the themes. The systematic reviews were unable to address the complexities of PE, limiting their capacity to give meaningful, evidence-based recommendations for PE. Also, a systematic review on educational programs in ILD management did not address PE topics with ILD patients.³⁰ While existing recommendations recognize crucial educational topics such as chronic pulmonary disease, dyspnea treatment, fatigue, oxygen therapy, and smoking cessation, none of these themes have been investigated in PE intervention clinical trials.^29,30,40 The study's limitations also included specific PE topics that were often not recognized clearly by a physiotherapist. According to this scoping review, the healthcare team, including pulmonologists, physiotherapists, psychologists, nurses, rheumatologists, and nutritionists, was all involved in delivering PE to ILD patients.^30,32–36 None of the studies gave details about the type of training obtained by physiotherapists and other healthcare professionals to provide effective PE. Whether health practitioners had been trained in PE and the study authors chose not to provide this knowledge in the paper or whether the clinicians had been trained in PE is unknown. Holland AE has enlisted the physician-centered perspective regarding core topics for PE prescription in her review.³² The review discusses in detail the opinions of the patients and physicians regarding PE among ILD patients. She concluded that ILD patients appreciate the ability to undergo PR training, but they identify specific topics that do not currently cover their needs. Patients and clinicians did not agree upon the most important topics for inclusion. The construction of a comprehensive ILD PR curriculum should consider utilizing patients' knowledge and clinician approaches.³²

A couple of studies involved family members and caregivers with the patients themselves during the PE sessions.²⁸ Caregivers must be included in PE sessions to better grasp the disease process and help their loved ones emotionally.^28,29,36,40

The scoping review revealed that none of the studies addressed the location of PE delivery and follow-up periods for the educational sessions. The lack of recommendations on where and when to deliver PE for patients with ILD leads to this disparity. This is another significant gap in the literature.

The goals and priorities defined in the scoping review included PE but was not the primary intervention in the included studies.³⁰ The important findings were the cost-effectiveness of using healthcare facilities, exercise tolerance, quality of life,^29,30 and coping mechanisms.³³ The majority of research have classified PE as a self-management program,³⁰ however because the authors have not defined PE, explaining it as a self-management program is regrettably unclear. Self-management can imply different things to different people, and it's rarely defined in the literature. Some consider it synonymous with PE; others see PE as part of self-management.

The authors used a variety of PE delivery techniques and procedures, which can be divided into two categories: verbal and written approaches.^30,31 The authors have addressed education topic with ILD patients, who are by far the most common recipients of PE.³⁰ None of the studies mentioned the PE delivery mechanism or methodology. Healthcare practitioners, especially physiotherapists, employ various treatment strategies in PE, including the method of teaching that is undecisive.^32,33,34 Depending on the goals of PE, additional verbal methods can be further suited to adopt a team - based approach or a counselling approach.⁴⁷

Another common form of PE was giving patients booklets,³¹ which were typically given in addition to discussion. However, they did not provide specific information on the contents of the booklet. This is also an efficacious method of PE delivery but must be easily understood irrespective of the level of literacy of the patient.^48–55 Few studies addressed the use for patients and caregivers of ILD-specific PE based on the web.²⁸ In future research, the emphasis should be on developing a patient disclosure guideline by ensuring that the print content is designed in plain language and simple design, ensuring consistency in PE.

The studies mainly used measures such as health-related quality of life questionnaires^28–30 and physiological performance measures as likely markers of PE efficacy. None of the studies have used outcomes measures explicitly to determine the effectiveness of PE. None concentrated on the influence of the PE alone. In addition, there are a limited range of valid PE instruments for patients with chronic diseases, while other methods are valid, reproducible, and sensitive to determine health status, quality of life^28–30 and physiological function and are well-established. One study discussed using self-reported scales to assess self-efficacy, quality of life and patient satisfaction for children with ILD.²⁸ Due to the heavy dependency on verbal contact in health care meetings, clear verbal communication, especially in PE, is essential for all health professionals. A 'Teach Back' informal approach for assessing the efficacy of PE ensures patients understand the directions. Future research could concentrate on those relevant methods that a health provider and a patient both settled on, for assessment of the efficacy of PE intervention with a PE specific goal, for example, information development, acquisition of skills, or behavioural change.^41,42

None of the studies have recorded disease and mortality, time for the first admission, number of hospital admissions and readmissions, reason for admission and overall hospital stays of days, appointments with the general practitioner and doctor visits, and prescription dispensations.