Patients who receive a diagnosis of spinal muscular atrophy (SMA) require an empathetic approach from their primary care physician when receiving the diagnosis and evaluating options, according to recent study findings.
A qualitative analysis published in the International Journal of Environmental Research and Public Health found that patients who receive a diagnosis of spinal muscular atrophy (SMA) and their family members are most able to discuss treatment options and future plans when met with an empathetic approach from their primary care physician.
SMA is a genetic disease that can appear in early childhood to early adulthood. The disorder causes dysfunction and death in the lower motor neurons, which leads to a decrease in muscular strength. Previous studies have found that patient communication with physicians is crucial to proper treatment in a variety of diseases. This qualitative analysis aimed to evaluate positive and negative ways of communicating the diagnosis of SMA to patients and their caregivers.
The study took place from September 2020 to March 2022 and used a cross-sectional design. Patients who lived in Brazil, did not have a history of cognitive impairment, were patients with SMA or family members, and were 18 years or older were able to participate in the study.
All participants received a call approximately 15 minutes in length during which they were asked questions about their diagnosis. Patients and caregivers were asked how they received the diagnosis, what the positive and negative aspects of communicating the diagnosis were, and how they would have liked to receive the diagnosis, among other questions. All responses were transcribed, decontextualized, analyzed, and divided into 4 themes: clarification of diagnosis, communication of prognosis, affective memory related to diagnosis process, and advice to doctors who reported the diagnosis.
There were 57 participants in the study, 29 of whom were patients with a diagnosis of SMA and 28 of whom were the patients’ mothers. The mean age of the patients was 32.86 years (range, 19-46) and the mean age of the mothers was 39.43 years (range 24-53). The majority of the patients had SMA type 3 (49%), with SMA type 2 the second most common type (39%).
Participants expressed anguish, despair, and abandonment when they were given the diagnosis without an explanation of the clinical meaning due to written documents or inappropriate terms. This caused a delay in treatment or led them to seek information from unreliable sources. Patients and caregivers expressed the need to receive the information using clear vocabulary in an appropriate environment that would allow patients to clarify any doubts and avoid the feeling of abandonment.
A physician estimating the life expectancy of the patient was met with negative feelings. Life expectancy could instead be communicated as a statistical estimate but with an emphasis on variability from individual to individual. Participants found that highlighting the positive aspects of the disease and planning the future helped when communicating the prognosis.
Empathetic posture and words were appreciated by the participants. These empathetic factors included looks, smiles, nods, touch, and posture. Patients were more calm, felt supported, and had more serenity when met with empathy from their physician. Patients who were not met with empathy felt helpless and felt their physician was insensitive. These communication barriers could affect the quality of life for patients.
Participants recommended that physicians were empathetic and used individualized communication to listen and understand the needs of their patients. Clarification of the illness, prognosis given in a clear and honest way, and continued education were also recommended.
There were limitations to this study. Bad news bias could have contributed to more negative aspects being included in this study. A life expectancy bias could have been prevalent in the study as most of the participants had SMA types 2 and 3. There was a predominance of women in the study which could have contributed to the way information was processed. There was also no validated research tool used for this study.
The researchers concluded that physicians must emphasize empathy during individual and family communication regarding the diagnosis of SMA. The need to improve and adapt techniques for delivering bad news is evidenced by the negative experiences reported by some of the participants.
Fernandes IAM, Menezes ROA, Rego G. Communication of the diagnosis of spinal muscular atrophy in the views of patients and family members, a qualitative analysis. Int J Environ Res Public Health. 2022;19:16935. doi:10.3390/ijerph192416935