Systematic review of effectiveness and quality assessment of patient education materials and decision aids for breathlessness

Abstract

Background Around 10% of adults suffer from clinically significant breathlessness. High quality and actionable patient education materials (PEMs) and patient decision aids (PDAs) have an important role for shared decision making and patient self-management. Objective To systematically assess the effectiveness of patient education materials (PEMs) and patient decision aids (PDAs) on clinical outcomes. Secondly, to assess the quality of PEMs and PDAs for breathlessness that are accessible online. Methods A systematic review of PEM or PDA intervention for breathlessness published between 1 January 2010 and November 2020 was conducted. An environmental scan and quality assessment of publicly available PEMs and PDAs was also conducted. Results Out of 2985 records, five studies were eligible for inclusion in this systematic review. Results of two randomised controlled trials suggest potential effectiveness of PEMs to improve patient reported outcomes and reduce healthcare utilization. In the environmental scan, 88 materials were included. Minimum reading age for most was high (Grade 10) and PEMs scored an average of 87% for understandability and 67% for actionability. Based on the DISCERN tool only 10 were classified as high quality. Conclusion There is a paucity of evidence on the effectiveness of PEMs and PDAs for improvement in breathlessness. There is a need to develop higher quality PEMs for breathlessness.

“It's like a forgotten issue sometimes …”: Qualitative study of individuals living and caring for people with chronic breathlessness

“…Community diagnostic centres where GPs can refer to Opening up direct referral to hospital-based spirometry for GPs Concerns of misdiagnosis by participants with rare conditions such as scleroderma and common ones such as asthma Providing greater access to further diagnostic tests which are not always accessible in primary care as reported in prior studies with Australian GPs and specialists 7,8 Formation of breathlessness referral services 9 to enable integrated assessment Provide primary care greater support, including digital resources and decision support systems 8 Management of chronic breathlessness Lack of nonpharmacologic support as adjuncts to treatment Previous studies have reported simple tools such as a hand-held fan to relieve breathlessness 10 Greater access to allied health and other nonphysician health professional deliver this support in addition to vital nonpharmacologic therapies such as pulmonary rehabilitation which significantly improve clinical outcomes 11 Lack of action plans and patient education materials Development of breathlessness action plans Development of high-quality patient education materials and apps for breathlessness self-management 12 hypothesised may be due to a knowledge gap regarding diagnostic tests such as spirometry. Others appreciated the GPs doing the maximum that they can and encouraged people to find a doctor that listens and understands breathlessness.…”

Patient education about breathlessness

“…During 2022, two comprehensive reviews of educational resources focussing upon breathlessness as a symptom were published concerning publicly available patient education materials (PEMs) 37▪▪ and the self-management mobile Apps 38▪▪ . The 88 PEMs reviewed included paper-based/printable PDFs ( n =52, 59%) and static webpages ( n =35, 40%).…”

“…This equates to the USA educational grade for students aged ≥17 years, which is often considered to reflect skilled readers. Less than half of the PEMs ( n =35, 40%) scored at a Grade level ≤8.0 (Supplemental Table 4 in 37▪▪ ). Using the PEMAT-Printable, 92% of PEMs scored above the recommended threshold of ≥70% for understandability 24 , with 40% scoring ≥70% for actionability (Supplemental Table 4 in 37▪▪ ).…”

“…Less than half of the PEMs ( n =35, 40%) scored at a Grade level ≤8.0 (Supplemental Table 4 in 37▪▪ ). Using the PEMAT-Printable, 92% of PEMs scored above the recommended threshold of ≥70% for understandability 24 , with 40% scoring ≥70% for actionability (Supplemental Table 4 in 37▪▪ ). In terms of the reliability and quality of information presented within the PEMs assessed using the DISCERN instrument, 11% were assessed as high quality with minimal shortcomings 37▪▪ .…”

Systematic review of shared decision-making interventions for people living with chronic respiratory diseases

“…There is a paucity of evidence to suggest patient educational materials (including PtDAs) are beneficial for reducing breathlessness and improving psychological well-being across acute respiratory diseases. 27 Two systematic reviews have been published to synthesise evidence on the impact of SDM interventions on people with asthma 28 and cystic fibrosis 29 but they found the evidence base to be very limited and too heterogeneous to draw meaningful conclusions about the relationship between the interventions and improved SDM or downstream health-related outcomes and nearly all the review population were children and adolescents. Therefore, there is a clear need to evaluate the efficacy of SDM interventions on adult patients living with CRD (eg, COPD, asthma, idiopathic pulmonary fibrosis, lung cancer).…”