Byline: Melody Sheldon, M.A.,CCC-SLP owns and operates Southwest Rehabilitation, a private practice in Coos Bay, Oregon. Since 1989, she has been providing services to acute care hospitals, extended care facilities, hospice, home health agencies, transitional homes, and to pediatric and adult patients in her clinic. In an effort to provide continuity, Melody Sheldon developed the Dysphagia Complaint Scale, which she and her staff use with patients and their families to rate the severity level of the problem throughout an episode of care.
Patient-centered care essentially revolves around the patient. The idea is that the patient knows best how to meet their needs, and it is the patient’s view that correlates with outcome or satisfaction.
Continuum of care is a concept involving a system that tracks patients over a period of time through an array of health services spanning all levels and intensity of care.
Functional Outcome Measure (FOM) provides a means to quantify change in the patient’s functioning throughout an episode of care using a common language among patients with the same diagnosis to provide information about whether predicted outcomes are being realized. It is also the foundation for determining which intervention approaches comprise best clinical practice.
As providers, we need to determine the complaints of our patients with dysphagia and ask them to rate their own severity level at the time of the initial evaluation. We then need to ask our patients to make these same assessments using the same scale on a regular basis throughout their time in treatment. Only then can the patient become an active participant in their care.
Currently, the Functional Outcome Measure as required by Medicare is used to quantify changes in the patient’s functioning throughout an episode of care. This scale, however, is based upon the therapist’s perceptions and opinions. We make an assessment of the problem or problems, but we shouldn’t take the position that the complaint is a “CI” (At least 1 percent but less than 20 percent impaired, limited or restricted) instead of a “CK” (At least 40 percent but les than 60 percent impaired, limited or restricted) in the face of the patient that’s telling us the problem is “severe” and “getting worse.”
“Patient-centered services,” “continuum of care,” and “functional outcomes measures” are terms used by our intermediaries with increasing frequency and have become synonymous with quality of care. If it is not already, soon quality of care will be linked to reimbursement. It is in our best interest as providers, and ultimately the best interest of our patients, that we implement infrastructural changes now.
Just as our intermediaries rely on documentation as a means of measuring quality of care, we as therapists should invite our patients to participate in the measurement process as well. At Southwest Rehabilitation, a visual analog scale, which we call The Dysphagic Patient Complaint Scale (DPCS) is used at the time of initial visit. Each patient is asked to list his or her complaints or concerns (e.g., coughing with liquid intake, food sticking, etc.). A vertical line is drawn down the center of a piece of paper and their complaints are listed down the side. The line has seven marks from 1 (the best) to 7 (the worst). Each complaint is graded by the patient.
Dysphagia Patient Complaint Scale (DPCS)
The number provided by the patient is then plugged into the patient’s long term goal(s) and used as a means of measuring progress.
Patients that we’ve used this with love this approach. They can’t wait to revise the “scale” again and again throughout the course of treatment addressing each of their problems and rating their level of improvement and/or lack of improvement relative to the previous assessment. One of the benefits of the DPCS is that the patient can see his or her complaints in a written format. Their complaints become validated. And when the patient is involved in developing a plan of care, the patient is much more likely to implement and adhere to suggestions.
Swallowing problems as a whole tend to be relatively similar. Common dysphagia complaints include:
Coughing with intake of food/fluid/saliva
Choking with intake of food/fluid/saliva
Complaints of food/medications sticking/lodging
Complaints of weight loss
Pain with deglutition
Fatigue with intake
Difficulty getting the swallow to go
Regurgitation of foods/fluids back into the oral cavity from the esophagus/stomach
Residuals in the mouth
Shortness of breath
Recurrent upper respiratory infections
Feeling of fullness in the throat
Wet vocal quality
Lots of mucous
Having to alter diet consistency
Once problems are listed on the Dysphagia Patient Complaint Scale, the plan of care can be discussed with the patient, based upon the results of the assessment, and paired to each complaint. For example, if the patient’s complaints include coughing with liquid intake and we know from our assessment that patient may benefit from learning the supraglottic swallow, we can list the strategy on our plan of care.
As with complaints, the options or approaches used by speech pathologists are straightforward and similar in nature. Typically, the plan of care may include one or more of the following:
Oral motor exercises
Change diet consistency
– Head flexed forward
– Lean left and turn head right
– Lean right and turn head left
Deep spit s/p swallow
1 bite: 1 swallow
Separate liquids from solids
Alternate liquids with solids
Cap liquids with solids
Swish liquids briefly before swallowing
Swish, spit and swallow residuals
Tongue sweep s/p swallow
Request additional assessments
Ideally, the patient and therapist produce a list of problems and a plan that is established at the time of evaluation and listed on the scale. This patient-centered approach provides an opportunity for a continuum of care, as the patient not only lists his or her complaints in a concise manner; they are able to rate their complaints throughout the course of treatment.
Dysphagia Patient Complaint Scale (DPCS)
The final step when using the scale is development of short-term goals. I usually tell patients, “Now that we know what bothers you and have some idea how to address your concerns, the question is, ‘What steps do we take to reduce the number on this scale from a 6 on this line to a 4 or less?’”
While therapists are consistent in identifying the sign or symptom associated with the problem and determining a plan of care, there is significant variability from facility to facility and therapist to therapist in the creation of short-term goals. CMS (Centers for Medicare & Medicaid) has established specific guidelines as to the contents of a goal. Each must be measureable, with a time frame and reflect who is going to do what (e.g., supraglottic swallow), when (e.g., during liquid swallows), and why (e.g., reduce coughing). With the current approach, patient goals vary greatly and have neither information from the patient to establish a baseline of severity nor a means of measuring improvement or lack of improvement in the patient’s opinion over time. For example, “The patient will swallow 10 out of 10 times with 90% efficiency reducing patient’s risk of aspiration during PO intake during 3 consecutive sessions.”
When using the Dysphagia Patient Complaint Scale (DPCS), the complaint, plan of care and measurement are readily available. For example,” The patient will reduce his complaint of coughing during liquid intake by learning the supraglottic swallow from a 6 to less than a 4 (with 1 being the best and 7 being the worst) using The Dysphagia Patient Complaint Scale (DPCS) by the end of the initial certification period.”
The Functional Outcome Measures required by CMS are used for billing purposes and to code progress throughout an episode of care. If practitioners are interested in the patient’s opinion as to whether progress is being made, however, the patient’s perceptions need to be included. While an analog scale is a psychometric response scale most often linked with assessing pain levels, it seems to be the perfect tool to measure the patient’s subjective complaints and progress towards established goals.
I recommend using the Functional Outcome Measurements combined with the Dysphagia Patient Complaint Scale. Together, these two “tools” allow us to measure acuity levels and satisfy billing requirements as well as perceived progress from the patient’s point of view. As providers, we can track “what’s the matter” with our patients and the response to treatment through a continuum of care. With the patient’s perceptions and input, however, we can align our interpretation with “what matters” to the patient and jointly establish a plan and goals, which, when reviewed with the patient, will reflect the satisfaction or outcome from the viewpoint of the patient.