I have been chewing on this topic for some time. It would be really helpful for us to let this sink in as we provide SLP services to patients with different levels of involvements.
Today’s challenge: consider that as we evaluate conditions as clinically presenting in function — how severity may not be necessarily align with patient/family experiences, in terms of impact on their quality of life.
Something I didn’t learn in graduate school = “Severity of presentations do not always necessarily congruently relate to impact.”
This concept first was revealed to me a number of years ago. I start to see a trend in interpreting standardized test score results, combined with the presentation of involvements as observed in the initial evaluation, along with the additional input of other factors, etc. Evaluation results tended to result a certain type of holistic picture for the impressions. I think that, at times, QOL impact as it relates to symptom severity may show itself as logically anticipated … moderate symptoms result in moderate impact; severe symptoms result in severe impact; mild symptoms result in mild impact.
And, while this may occur at times, many times it does not.
Have we considered the topic as an entire field: seeing the quality of life impact as separate from the symptom severity?
Such as:
- Mild symptoms of cognitive-linguistic challenges presenting as severe to the individual.
- Moderate symptosm of apraxia impacting a person’s QOL as severe.
- Severe laryngeal involvement impacting safety, but the patent’s perspective is that the symptoms are not QOL-concerning.
- Mild presenting aphasia symptoms impacting the patient also as mild impact in QOL, but the family/caregivers experiencing them as severe.
- Moderate symptoms of receptive involvement resulting in mild QOL impact.
- Severe esophageal involvement was observed on an instrumental only mildly impacting QOL per patient.
The possibilities are pretty much endless. How many times have we evaluated a patient and perhaps several subject areas are recommended to be addressed in treatment — but when the results are shared, the patient or family desire to focus treatment on a less clinically-presenting involvement, because it impacts quality of life in a more direct way.
This leads to why it is so important to include Patient Rating Outcomes Measures (PROMs) in our evaluation process— because we cannot actually pry open the patient’s or family’s cerebrum and view the details in terms of occurrence and intensity they are internally experiencing — we only know the areas and impact that they share with us.
I have also found that allowing a listening ear and a validating perspective to let the patient knows that it makes sense that they are experiencing it as more involved than how they test, per se — is a specialized way in order to let a person know that it matters that they are experiencing it.
How many times have we ourselves been patients for different service providers, and how amazing does it feel to have a provider “get it” by explaining details and context that interacting into why we are feeling symptoms stronger than the objective measures say the severity is. When a provider can take all of the related information involved, and explain the factors that make a difference it how it impacts our lives — it can be the missing piece of the puzzle to help us move forward in the way we desire.
Key factors which may be helpful in understanding when presentation vs. personal/family impact on QOL are not along the same type of trend, which I have observed:
- educational level pre-onset;
- personality;
- awareness of deficits;
- degree of family support to provide feedback;
- family culture trends;
- for acquired involvements, if the range of typical performance prior to onset was on the higher end;
- expectations of the patient for improvements following onset;
- financial factors;
- presence of vs. the need for a family/personal advocate;
- medical history simplicity vs. complexity;
- environmental/relationship factors;
- management/tolerance of stress and change;
- expectations by the patient/patient’s family for the patient’s course at this stage of life; and,
- quality vs. quantity of support in the patient’s world.
I think these areas are important to understand when there is a presentation/QOL impact incongruence, because it is an opportunity to interject helpful interventions.
Asking ourselves the following questions could be helpful:
- What needs does this patient present with, which result in an increased impact on QOL?
- What recommendations could be made to mitigate impact, as we initiate SLP services?
- What environmental details, compensatory strategies or simple recommendations could make a meaningful difference in what the patient is experiencing?
- What are the clinical comments that could be made to increase understanding, provide insight and allow for comfort in the midst of all factors involved?
- Are we missing anything that will help the patient reduce how their SLP area challenges/impacts their daily life?
It is important to keep an open mind in asking about how the SLP area of concern is being experienced by the patient and family. How their SLP subject impacts them matters (not just how they score on a test or the details in what we observe).
In seeing the evidence of suffering, intensity and results of SLP involvements — we can explore methods and mechanisms to open the door to assist with some reprieve.
Just like how we learned in undergraduate school/graduate school — condition by condition, factor by factor; how the patients tend to present may not be textbook-case. There are many aspects, co-morbidities and complexities at play.
And, just as we would desire others to understand all of the various intricacies involved in our own medical issue we would be experiencing, we can do the same in asking the questions, listening intentionally and mindfully, as well as utilizing interventions which can lead us to one thing and one thing only:
Making our own impact.
Wilson Nice, SLP, is the owner of Nice Speech Lady, a medical SLP platform for functional, practical and evidence-based SLP clinical resources.
Nice has been publishing complimentary tools for SLPs since February of 2018.
She is a hybrid outpatient clinic owner — serving adults and children, in Socorro, New Mexico.
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