EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases
Abstract
:1. Introduction
2. Methodology
3. Results
4. Discussion
4.1. Step 1: E—Empathy
4.2. Step 2: M—Message
4.3. Step 3: P—Prognosis
4.4. Step 4: A—Acknowledge
4.5. Step 5: T—Time
4.6. Step 6: I—Individualize
4.7. Step 7: A—Autonomy
5. Conclusions
6. Future Perspectives
7. Limitations
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Inclusion Criteria | Exclusion Criteria |
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Original research articles Written in English Peer-reviewed publications Monogenic neuromuscular disease | Case reports, reviews, and opinion papers Written in another language Publications in unreviewed journals Rapidly reversible neuromuscular disorders, such as transient neuropathies and myopathies |
Studies related to the moment of communicating the diagnosis of a neuromuscular disease, addressing factors related to the disclosure of this diagnosis, communication barriers, and disclosure of the prognosis. | Studies describing screening tests and therapeutic decisions. |
N. | Study | Study Proposal | Design | Methodology | Sample | Factors that Positively Impact the Communication of the Diagnosis of Neuromuscular Diseases | Communication Barriers in the Diagnosis of Neuromuscular Diseases | Study Conclusions |
---|---|---|---|---|---|---|---|---|
1 | Fernandes, 2022 [23] | Analyzing the principle of autonomy in the communication of the diagnosis of spinal muscular atrophy (SMA) | Quantitative | Online questionnaire | 50 family caregivers from AME, Brazil. |
|
|
|
2 | Anestis 2021 [7] | Assessing current practice and perspectives from British neurologists on diagnosing a motor neurodegenerative disease | Qualitative and quantitative | Online questionnaire with demographic information, current practice, bad news experience, and training needs | 49 British Neurologists |
|
| Although compliance with basic standards of good practice was reported by most professionals, the study identified several areas for improvement, in addition to the need for training of professionals regarding the breaking of bad news. |
3 | Mirza, 2019 [9] | Determining whether guidelines for breaking bad news, particularly SPIKES, are consistent with the preferences of patients diagnosed with cancer, lupus, amyotrophic lateral sclerosis, multiple sclerosis, HIV/AIDS, or Parkinson’s disease. | Qualitative and quantitative | Online questionnaire | 1337 patients from Canada |
|
| It highlights that SPIKES reflects the perspectives of many patient groups and identifies five additional suggestions to help clinicians break bad news. |
4 | Aoun, 2016, 2018 [11,25] ** | Describing experiences of receiving a diagnosis of motor neuron disease (MND) in order to take a more person-centered approach | Qualitative and quantitative | Anonymous postal questionnaire sent via patients association | 248 people diagnosed with NMD from Australia |
|
| The person-centered approach, focused on values, preferences, psychosocial and existential concerns, caring, supporting, and comforting rather than just treating is what matters most in a relatively short period of a fatal illness. |
5 | O’Connor, 2018 [26]/Aoun 2017 [27] ** | Describing the experiences of family caregivers of people with NMD when receiving the diagnosis, to improve the communication of the diagnosis | Qualitative | Anonymous postal questionnaire sent via patients association | 190 Australian family caregivers |
|
| Neurologists can benefit from education and training in communication skills to respond to emotions of patients and families and develop best practice protocols. |
6 | Bendixen, 2017 [8] | Reflections from parents on the Duchenne muscular dystrophy (DMD) diagnostic process | Qualitative | Semi-structured interview conducted by telephone | 15 parents of boys withDMD from the USA |
|
| Despite marked medical progress in recent decades, there are still barriers to diagnosing DMD and guiding care. |
7 | Aoun, 2016 [28] | Determining the practice in communicating the diagnosis of NMD, training needs in breaking bad news, and comparing neurologists’ experiences with patients seen in the same year and with international protocols | Qualitative and quantitative | Online questionnaire | 73 neurologists from Australia |
|
| Neurologists reported some difficulty in transmitting the diagnosis of NMD, with a feeling of moderate to intense stress, and demonstrated interest in training to respond to the emotional demand of patients and to develop a protocol of good practices. |
8 | Seeber, 2016 [29] | Evaluate how NMD patients react to the disclosure of the diagnosis in 2 consultations with an interval of 14 days | Qualitative | Semi-structured household interview and report analysis | 21 patients from the Netherlands |
|
| This approach fits well with the way patients process the message, gather information, and deal with their altered perspective on life. The neurologist must follow a clear protocol and schedule a short-term return consultation. |
9 | Dennis, 2015 [22] | Assessing the timing and content revealed to a child by their parents regarding the diagnosis of aneuploidies, the resources accessed, feelings and concerns of the parents, and recommendations for approaches of breaking bad news | Qualitative and quantitative | Online questionnaire | 139 relatives and 67 people with sex chromosome aneuploidies from the USA, Canada, Europe, and Australia |
|
| The approach depends on the personality, family affection level, and communication style of the children. Their reactions were commonly neutral or positive. Negative reactions may have resulted from inappropriate information considering their maturity. |
10 | Schellenberg, 2014 [12] | Examine the ability of resident physicians in reporting ALS diagnosis | Quantitative | Checklist on breaking bad news | 22 Canadian resident physicians |
| Dissatisfaction and apprehension of resident doctors regarding the training for communicating this diagnosis | |
11 | Chió, 2008 [24] | Assessing information preferences and information-seeking behavior in ALS patients and caregivers | Quantitative | Interview using a structured questionnaire | 60 patients and 20 caregivers from Italy |
|
| Healthcare professionals should be aware that ALS patients and caregivers often use the internet for information and should help them select and interpret the news they have encountered. |
12 | McCluskey, 2004 [14] | Determining the degree of satisfaction of patients and/or family members with the way they received the diagnosis of ALS and to assess aspects associated with greater satisfaction | Quantitative | Anonymous postal questionnaire sent via patient association | 163 ALS patients and/or family members fromPhiladelphia, USA |
|
| There is the possibility of improving the communication of the diagnosis of ALS, with adherence to the techniques of breaking of bad news and availability of time during the consultation. |
13 | Beisecker, 1988 [30] | Perspectives of the ALS patients on the role of physicians and other health professionalsin their care | Qualitative | Semi structured interview | 41 ALS patients from Kansas, USA |
|
| Patients want to see the doctor at every appointment and expect emotional support and care from both the doctor and the nurse and related healthcare professionals. |
14 | Firth, 1983 [31] | Sharing the experiences of parents of children with DMD at the time of diagnosis | Qualitative | Home interview | 66 families (single mother or father and mother) from Great Britain |
|
| There is not just one way to tell parents that their children have DMD. The article summarizes suggestions from parents who have had this experience. |
Communication Guide for the Diagnosis of Neuromuscular Diseases | |
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Empathy |
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Message |
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Prognosis |
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Acknowledgment |
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Time |
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Individualization |
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Autonomy |
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Fernandes, I.A.M.; Menezes, R.O.A.; Rego, G. EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases. Int. J. Environ. Res. Public Health 2022, 19, 9792. https://doi.org/10.3390/ijerph19169792
Fernandes IAM, Menezes ROA, Rego G. EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases. International Journal of Environmental Research and Public Health. 2022; 19(16):9792. https://doi.org/10.3390/ijerph19169792
Chicago/Turabian StyleFernandes, Isabella Araujo Mota, Renata Oliveira Almeida Menezes, and Guilhermina Rego. 2022. "EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases" International Journal of Environmental Research and Public Health 19, no. 16: 9792. https://doi.org/10.3390/ijerph19169792