Things left unsaid: important topics that are not discussed between patients with systemic sclerosis, their carers and their healthcare professionals—a discourse analysis
Abstract:Introduction
Systemic sclerosis (SSc) is a rare condition that can be complicated by interstitial lung fibrosis (SSc-ILD)—a major cause of mortality. This study explored information and communication needs of patients with SSc-ILD and their carers to understand what they are and whether they are met.
Methods
Qualitative research was performed, including in-depth individual interviews and observed conversations between pairs of patients, physicians and nurses, and between patients and physicians discussing ex… Show more
“…However, in this study both patients and HCPs indicated that patients have limited understanding of the disease, particularly at the time of diagnosis, when they are confused. It is well-known that during consultations, physicians often revert to medical terminology when the issue becomes complex, while patients use medical terminology without sufficient understanding of the terms [ 28 , 29 ].…”
Objectives
Interstitial lung disease is frequent in systemic sclerosis (SSc-ILD) and associates with significantly reduced quality of life. Here we aimed to analyse patient pathways, and experiences of patients and healthcare providers (HCPs) in order to identify unmet needs in the management of SSc-ILD patients.
Methods
Semi-structured qualitative interviews conducted in eight European countries looked at HCP (n=95) and patient perspective (n=47), using two sets of 70 research questions. Pre-diagnostic, diagnostic and post-diagnostic phases of the patient pathway were systematically explored.
Results
(1) In the pre-diagnostic phase several gaps were identified by HCPs and patients in all participating countries: limited disease knowledge among primary care physicians and specialists, lack of accurate patient information, delayed and/or inappropriate referral. (2) The diagnostic phase is in most countries coordinated by rheumatologists also being the main point of care. Depending on the local health system, organisation of multidisciplinary collaboration varies. HCPs issued lack of national guidelines, while patients stated difficulties obtaining disease-related information. (3) In the post-diagnostic phase, HCPs and patients indicated lack of curative treatment, specialized nurses, paramedical and psychological support. Patients and caregivers additionally expressed the need for clear information on SSc-ILD.
Conclusion
Lack of disease specific knowledge, gaps in national healthcare systems and insufficient information and support for patients and caregivers were identified as unmet needs to ensure timely diagnosis, provide better patient management and to improve quality of life in SSc ILD patients.
“…However, in this study both patients and HCPs indicated that patients have limited understanding of the disease, particularly at the time of diagnosis, when they are confused. It is well-known that during consultations, physicians often revert to medical terminology when the issue becomes complex, while patients use medical terminology without sufficient understanding of the terms [ 28 , 29 ].…”
Objectives
Interstitial lung disease is frequent in systemic sclerosis (SSc-ILD) and associates with significantly reduced quality of life. Here we aimed to analyse patient pathways, and experiences of patients and healthcare providers (HCPs) in order to identify unmet needs in the management of SSc-ILD patients.
Methods
Semi-structured qualitative interviews conducted in eight European countries looked at HCP (n=95) and patient perspective (n=47), using two sets of 70 research questions. Pre-diagnostic, diagnostic and post-diagnostic phases of the patient pathway were systematically explored.
Results
(1) In the pre-diagnostic phase several gaps were identified by HCPs and patients in all participating countries: limited disease knowledge among primary care physicians and specialists, lack of accurate patient information, delayed and/or inappropriate referral. (2) The diagnostic phase is in most countries coordinated by rheumatologists also being the main point of care. Depending on the local health system, organisation of multidisciplinary collaboration varies. HCPs issued lack of national guidelines, while patients stated difficulties obtaining disease-related information. (3) In the post-diagnostic phase, HCPs and patients indicated lack of curative treatment, specialized nurses, paramedical and psychological support. Patients and caregivers additionally expressed the need for clear information on SSc-ILD.
Conclusion
Lack of disease specific knowledge, gaps in national healthcare systems and insufficient information and support for patients and caregivers were identified as unmet needs to ensure timely diagnosis, provide better patient management and to improve quality of life in SSc ILD patients.
“… 6 Moreover, the presence of dedicated nurses helps patients to feel free to ask questions about their condition. 7 Figure 1 Different clinical domains of systemic sclerosis and a suggested multidisciplinary approach. …”
Systemic sclerosis (SSc) is a rare connective tissue disease characterised by immune dysfunction, vascular damage and fibrosis affecting the skin and multiple internal organs. The clinical spectrum of SSc is wide and its manifestations may lead to severe morbidity and mortality, in addition to a great impact on patients’ quality of life. Due to the multifaceted clinical manifestations of SSc, its management requires a combined expertise of different medical specialists to guarantee an adequate disease control and prevent organ complications. Multi-disciplinary teams (MDT), which are composed by physicians and other specialized health professionals, represent therefore a key element for the comprehensive management of SSc patients. Moreover, MTD can improve communication and patients’ empowerment while the presence of dedicated nurses can help patients to ask questions about their condition. The scope of this narrative review is to analyse the available evidences regarding the role of MDT in the management of SSc patients, and how this holistic approach may improve different disease domains and the overall prognosis. MDT regarding the cardiovascular and lung complication are the more represented in literature, given the great impact in prognosis. Nonetheless, MDT have been shown to be fundamental also in other disease domains as they can intercept early manifestations, thus stratifying patients based on the individual risks in order to personalize patients’ follow-up. MDTs may also minimize the treatment delay, enabling fast-track specialist referral. On the other hand, there are few trials specifically studying MDT in SSc and several authors have highlight the lack of standardization.
“…It can be difficult for patients to develop a clear understanding of the diagnosis, prognosis, and treatment options. 10,11 However, if patients are not educated about the disease and its course, key patient priorities may not be addressed. Communication challenges between patients and physicians can lead to suboptimal disease management.…”
Section: Introductionmentioning
confidence: 99%
“…The need to improve health care professionals’ communications with patients and to involve them in decision-making is increasingly being recognized. 10,11,53 Currently, there are no curative therapies for SSc-ILD and it is important that patients understand this. Nevertheless, as mentioned earlier, there is evidence to support the use of the recently FDA-approved agent nintedanib, 17 and the recommended immunosuppressants, cyclophosphamide, and mycophenolate mofetil.…”
Section: Introductionmentioning
confidence: 99%
“…7,19-21,47 Patients and their families need time to process the diagnosis and treatment plan, and they must be given ample opportunity to ask questions. 10,11 A typical 15-minute clinic appointment is not enough time to discuss how best to manage such a complex disease and minimize its effects on the patient’s mental and social well-being. Longer appointment times (eg, 45 minutes) would be challenging to accommodate within current health care systems but could be considered an aspirational target.…”
Systemic sclerosis–associated interstitial lung disease is challenging to diagnose and treat. Patients and physicians can perceive the disease differently and have different views on its management. Communication issues between them can lead to suboptimal disease management. Despite a clear need for improvement in the speed and accuracy of the diagnostic workup, the heterogeneity of clinical symptoms renders the process long and challenging. When considering treatment options, physicians may be more focused on the evidence supporting a particular treatment or on a patient’s pulmonary function test results, as opposed to the realities of the patient’s difficulties with symptoms or the psychosocial effects of systemic sclerosis–associated interstitial lung disease. Disease management plans should be determined by the patient’s own preferences and goals as well as the objective clinical situation. Health care providers must consider their patients as partners on a journey in which treatment decisions are reached jointly. This review will focus on the perspectives of physicians and patients in relation to the diagnosis and management of systemic sclerosis–associated interstitial lung disease. Similarities and differences in these perspectives will be identified, and strategies for achieving optimal disease management will be proposed.
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