The results of this study demonstrate that the PROFILE PD is a reliable and valid scale that can be used to quantify deficits in body systems and activities of individuals in early and mid-stages of PD. The internal consistency of the scale is high, with little improvement made by deleting questions. The high correlation between the PROFILE PD and UPDRS at baseline (r = 0.86, P < 0.0001) demonstrates that the PROFILE PD examines the same components as the gold standard for measuring signs and symptoms of PD. Furthermore, the PROFILE PD was highly correlated with the S&E, another measure of the overall impact of PD. Approximately 50% of the items on the PROFILE PD relate to functional activities, whereas the other 50% relate to deficits in body systems and cognitive/emotional factors. Many of these later items may affect physical performance; however, others are not expected to relate to physical performance, hence the moderate correlation between the 2 measures. As anticipated, the PROFILE PD did not correlate with the CES-D, a measure of depression.
The PROFILE PD was constructed with 3 subscales: body systems, activities, and cognitive/psychological domains. Although 2 of the 3 subscales of the original PROFILE PD were supported by an assessment of internal consistency (the Cronbach α of .82, .89, and .56, respectively), factor analysis of this final scale suggests that there is a single scale. Most likely this reflects the high level of interrelations between body systems and activities for those with PD. For this reason, only the total score is recommended for use in clinical practice and research.
It is noteworthy that the UPDRS recently was revised by a working group of the Movement Disorders Society because of many of the same concerns that prompted us to develop the PROFILE PD.6 Specifically, the MDS-UPDRS has an increased emphasis on rating mild impairments and disability of PD; uniform anchors are used with consistent meaning of numbers across questions.6 The PROFILE PD was not compared with the MDS-UPDRS because the latter scale was not available until almost all of the data for this article had been collected. Although the MDS-UPDRS is likely to be more responsive to physical interventions in individuals who are in early and mid-stages of PD, the scale may not meet all of the needs of the physical therapist for several reasons. The MDS-UPDRS continues to heavily emphasize items that are responsive to pharmacological intervention (eg, many points are devoted to a detailed determination of tremor, hand bradykinesia, dyskinesia, and dystonia). Thus, the MDS-UPDRS is heavily weighted to problems in body systems that are not specifically responsive to physical intervention. Furthermore, because of the heavy emphasis on these items, which are difficult to score consistently, administration of the MDS-UPDRS requires substantial training for reliability of use. And finally, administration of the total MDS-UPDRS scale is anticipated to take upward of 30 minutes (compared with about 15 minutes for the PROFILE PD). In contrast to the MDS-UPDRS, the PROFILE PD is an attractive alternative for daily physical therapy practice, specifically tailored to the physical therapist's examination of the individual in early and mid-stages of PD.
A few limitations should be acknowledged. The UPDRS and PROFILE, used in determining construct validity of the PROFILE PD, were administered as many as 2 months apart. This was because of the number of steps (and scheduling constraints) required to determine eligibility of participants for the randomized, controlled exercise study. One of the eligibility requirements for the study was being stable on dopamine replacement therapy. Despite the long delay between administrations of the 2 measures, the correlation was high. Perhaps it would have been even higher had the 2 measures been administered at the same time. Second, findings can be generalized to individuals only in stages 2 and 2.5 of Hoehn and Yahr scale because of the small numbers of participants in the earlier and later stages of the disease. Third, responsiveness over time should be evaluated in a future study. Two issues should be examined: the natural history of change on the PROFILE PD and the effects of exercise interventions on performance on PROFILE PD. With these additional data, a judgment can be made regarding the use of this scale as an outcome measure for physical interventions for people in the early and mid-stages of PD. Finally, additional data, specifically examining individuals with PD whose disease is in H&Y stages 3 and 4, will elucidate the benefits of this scale in later stages of the disease.
In summary, PROFILE PD consists of 24 items that would typically be assessed in examination and evaluation of individuals with PD. Using this scale to quantify the information obtained during the initial examination, the physical therapist has available a quantitative documentation of the individual's status in almost all areas that are important in a global assessment. These data are not intended to substitute for the quantitative performance data that also are obtained when examining people with PD (eg, measures of balance and gait). However, they provide the overall summary of the individual's difficulty with body systems and activities associated with PD. In addition, the PROFILE PD may complement the UPDRS in investigative trials. Data obtained with the MDS-UPDRS (the gold standard for quantifying change in PD) are essential for comparison with any other studies. However, future investigations will determine whether PROFILE PD is more responsive to change than the UPDRS in participants with PD undergoing a physical intervention.
The authors gratefully acknowledge Jan Euley, PT and Wendy Kriekels, PT, DPT who conducted the testing and Deborah Hall, MD who provided the UPDRS scores obtained during medical screening of participants We greatly appreciate the efforts of Cory Christiansen, PT, PhD and Pamela Mettler for management of data and of the projects overall. This work was made possible by support of the National Institutes of Health (R01 HD043770 and MO1 RR00051).
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APPENDIX Profile of Function and Impairments Level Experience With PD (PROFILE PD)
INSTRUCTIONS TO THE EXAMINER
This rating scale is to be completed using a combination of questions to the patient and observations by the examiner. To develop an appreciation of the patient's usual condition, you may need to probe using simple examples. Avoid “yes/no” questions as these questions will not always give a true picture of the patient's condition. Use any observation throughout the session, coupled with patient/caregiver report in rating the patient. If the patient denies having a particular impairment, but if you observe that impairment, rate the patient on the basis of your observation. For example, a patient may deny having dyskinesia, yet be clearly dyskinetic during the interview. Always record the average/usual level of performance or report for each question or task. For bilateral activities of the upper and lower extremity, record the “worst” extremity. For all questions, responses are based on the past week unless specifically indicated otherwise.
Tremor With Activity
The patient is seated in a chair without armrests. Place a bottle of water and a cup on the desk. Ask the patient to fill the cup with water, bring the cup to the mouth, and return it to the desk. Then ask the patient to repeat with the other hand. Ask the patient whether his or her hands are steady when reaching or holding a newspaper in unsupported position. If the answer is “no,” ask the patient to close eyes and raise arms forward to shoulder height with elbows extended/forearms pronated. Have the patient hold this position briefly. Observe for tremor. Rate tremor with activity based on the worst extremity. In addition, observe for tremor throughout the session and revise rating if necessary.
- 0 = None.
- 1 = Slight; present with fine motor action, able to perform.
- 2 = Moderate; clearly present with any action/intention, occasionally bothersome.
- 3 = Marked; present with action and sustained position (may drop items, spill drink).
- 4 = Severe; marked in amplitude and present most of the time, cannot feed self, write.
The patient is seated in a chair without armrests facing you. The patient has both feet flat on floor and forearms are resting on lap palms up. Ask the patient to close his or her eyes. With his or her hands relaxed, ask the patient to name presidents backward from present president (ie, Obama, Bush, Clinton, Bush Sr, Reagan, Carter, Ford, Nixon). OR, ask the patient to name months backward. Rate resting tremor based on the “worst” extremity. Observe the patient throughout the interview and revise the rating if necessary.
- 0 = None.
- 1 = Slight; “pill rolling” (circular motion of approximated tip of thumb and forefinger) not bothersome.
- 2 = Moderate; only occasionally bothersome, may increase with attention.
- 3 = Marked; present at rest, increases with attention; noticeable and bothersome most of the time.
- 4 = Severe; constant; very disturbing.
The patient is seated in a relaxed position with arms at sides. Hold the patient's hand just above elbow. Move each upper extremity through full flexion and extension range of motion and determine resistance to passive range of motion (PROM). Next, ask the patient to scoot hips forward in chair. Move the lower extremity through flexion and full available ROM of the knee. Again determine resistance to PROM. Be careful to differentiate between tight hamstrings and rigidity. Finally, ask the patient to remove his or her eyeglasses; determine resistance to passive flexion, extension, and lateral flexion of the neck.
- 0 = None.
- 1 = Slight or detectable only with reinforcement (contralateral fist).
- 2 = Mild; present with passive alternating movements; tenting of hands.
- 3 = Moderate; present in joints associated with movement but full ROM.
- 4 = Marked; full range achieved with difficulty, or contractures are present.
With the patient standing in a relaxed position, assess posture from the perspective of an RN or MD as opposed to the in-depth postural assessment consistent with a physical therapist's usual practice. That is, use criteria that an MD or RN might use to judge abnormality.
- 0 = Normal.
- 1 = Not quite erect (slight truncal flexion).
- 2 = Definitely abnormal; may be leaning to 1 side; beginning arm flexion.
- 3 = Moderately abnormal; kyphosis with leaning moderately to 1 side.
- 4 = Severely abnormal, head extremely flexed forward, hands elevated above waist, and flexion of knees.
Postural Stability (Response to Sudden Posterior Displacement by the “Pull Test”)
Explain the test to the patient, reassuring the patient that he or she will not fall. Then ask the patient to stand erect, with eyes open and feet slightly parted. Now stand about 2 ft behind the patient. (You can position yourself a few feet in front of a wall, so that you do not fall should the patient fall backward onto you.) Once positioned, gently pull the patient at the shoulders to give the patient an idea of the nature of the displacement and to provide you with an estimate of the patient's stability. Pull a second time with force sufficient to displace the patient in a posterior direction. To grade the patient as “normal,” the patient should be able to withstand the same force as a young, healthy individual.
- 0 = Normal; may bend at hips, take 2 or 3 steps backward w/o loss of balance.
- 1 = Retropulsion (>3 steps backward) but recovers unaided.
- 2 = Absence of postural response; would fall, is not caught by examiner.
- 3 = Unstable; loses balance spontaneously.
- 4 = Unable to stand unassisted.
Ask the patient whether he or she experiences abnormal/involuntary movements that are fidgety, squirmy, antsy, often slow, and not smooth and may be painful. Patients or caregivers/others may report that the patient often has pursed lips, changes sitting position frequently (eg, crossing/uncrossing of legs). Ask how many hours during waking day this movement is noted.
Note that patients may deny dyskinesias yet be in constant motion during the interview. Score dyskinesia, on the basis of the patient's report as well as observation throughout the test. Note that dyskinesia often occurs at peak dose.
- 0 = None.
- 1 = Mild, occasional, or sporadic occurrences.
- 2 = Moderate; 10 to 25% time; affected.
- 3 = Marked: about 50% time; have difficulties.
- 4 = Severe; more than 75% time; debilitating.
Ask the patient whether he or she experiences abnormal tone, evidenced by involuntary clonic/cramping movements/“drawing” of arms and legs. Probe with questions such as the following: Do you experience any drawing, clawing, cramping of fingers, foot/toes, biceps/triceps, neck muscles? Does your foot turn in when you are walking? Do you have a tendency to walk on your toes? Do your neck muscles feel as though they are pulling to one side? Does this cramping interfere with activities? How many hours during the day are you aware of this tightness?
Note that patients may deny dystonia yet exhibit the symptom during the interview. Score dystonia, on the basis of the patient's report as well as observation during the test.
- 0 = None.
- 1 = Mild; occasional or sporadic abnormal movements.
- 2 = Moderate; 10% to 25% time; infrequently interferes with some activities.
- 3 = Marked; about 50% time; interferes or prohibits some activities.
- 4 = Severe; more than 75% time; debilitating.
Ask the patient whether the symptoms of Parkinson's disease vary during the day, depending on when he or she takes medications or for any other reason. Probe with questions such as the following: Do fluctuations become noticeable or are you aware of any changes (eg, handwriting, increased tremor, or slowness) if you have forgotten to or are late taking PD medications? Do you experience a “wearing off”? Are you any slower? Do you notice an increase in tremor or a change in your walking pattern or a decrease in legibility of your handwriting? NOTE: if the patient is not taking levodopa (Sinemet) there will be NO “off periods.”
- 0 = Are not noticeable.
- 1 = Become noticeable if medications late/forgotten; not debilitating (1%-25% time noticeable).
- 2 = Frequently interfere with daily activities between doses of medications (26%-50% time noticeable).
- 3 = Interfere with daily activities a great deal. Activities and social interactions must be planned around time of medications (50%-75% time noticeable).
- 4 = Are debilitating; cannot perform simple activities or self-care routines because of the symptoms regardless of medications (>75% time noticeable).
Falling (Unrelated to Freezing)
Ask the patient whether he or she has experienced any falls (to the floor) in the past year that are not related to freezing. If the answer is “yes,” probe to determine how frequently falls occur.
- 0 = None (less than once per year).
- 1 = Rare falls (less than 4-6 times per year).
- 2 = Occasional falls (less than once per month).
- 3 = Frequent falls (less than once per week).
- 4 = Daily falls.
Freezing With Gait/Start Hesitation
Ask the patient if he or she has trouble getting started with first few steps or experiences falls if he or she freezes while walking. Probe with questions such as the following: Are you familiar with the term “freezing” as it relates to PD? Have the patient try to define freezing before explaining it. Then explain freezing if necessary. Do your feet stick to the floor when you attempt to move forward when first standing from chair? Do you experience difficulty when approaching a chair/curb or when passing through narrow doorways or when navigating in crowded areas?
- 0 = None.
- 1 = Rare freezing when walking; may have start hesitation.
- 2 = Occasional falls due to freezing while walking.
- 3 = Frequent freezing; may have frequent (less than monthly) falls.
- 4 = Frequent falls from freezing (at least monthly).
Ask the patient, “Do you have trouble starting to move, or to keep moving? Do you feel you are slower in moving than you use to be or compared to those around you?” Ask the patient to open/close his or her hand repeatedly and as fast as possible. (“Raise your hand like you are being sworn in and then open and close your hand as fast as possible.”) Also ask the patient to tap his or her foot and raise the heel about 6 inches from the ground repeatedly and as fast as possible. Also note whether the patient has a masked face, has limited postural adjustment during the session, and moves slowly or through small amplitudes.
Rating of body bradykinesia is based on observation and self-report related to slowness, hesitancy, and decreased or lessened amplitude of movements. Score this test on the basis of observations throughout the session as well as patient report. You should not rely on a single issue (eg, hand opening/closing, masked face, but should score on the basis of the total presentation). If you do not observe slowness and the patient denies being slow, but reported in previous questions that things take longer, base the rating on the patient's overall report.
- 0 = None.
- 1 = Minimal slowness, giving movement a deliberate character; could be normal for some persons.
- 2 = Mild degree of slowness and poverty of movement that is definitely abnormal or reduced amplitude.
- 3 = Moderate slowness, poverty of small amplitude movement.
- 4 = Marked slowness, poverty of small amplitude movement.
Ask the patient whether he or she has noticed changes in voice especially related to volume/ability to communicate over the past few years or since PD was diagnosed. Probe with questions such as the following: Are you aware of difficulty when talking on telephone? Do people other than your spouse ask you to repeat yourself sometimes? Frequently?
Rate speech on the basis of your observation as well as the patient's report.
- 0 = Normal, clear, good volume, easily understood.
- 1 = Slight loss of inflection, resonance; good volume, easily understood.
- 2 = Moderate loss of diction, low volume; usually understandable, may need to repeat.
- 3 = Marked impairment with dysarthria, hesitancy, monotone; difficult to understand.
- 4 = Unintelligible.
Ask the patient whether he or she has difficulty with dressing. Probe with questions about donning jackets, dress, shirts, or socks. Ask the patient “Do you need to modify your approach for getting on pants/slacks? Do you have any problems with buttons/zippers? Are you slower than you used to be?” Also observe certain tasks (eg, opening/closing a button).
Note that if the patient accepts assistance for several activities (eg, buttons, socks, sometimes getting on pants) but typically completes more than half the dressing alone, the score will be 2.
- 0 = Normal.
- 1 = Dresses independently; slightly slower, more effort, or both.
- 2 = Requires minimal assistance (another person) with buttons, sleeves, and/or ties/collars.
- 3 = Requires moderate assistance (another person) with half of dressing activities (lower body dressing, shoes, and socks).
- 4 = Requires maximal assistance (another person); may be able to help with bodily movements.
Ask the patient: Do you have difficulty with personal hygiene activities such as shaving/washing/brushing hair? Do you use a wall bar or shower bench because of PD? Do you use an electric shaver/toothbrush because of PD? Are you any slower with these acts than you used to be?
Note that if the patient accepts assistance for several activities (eg, shaving, combing hair) but typically completes more than half the hygiene alone, the score will be 2.
- 0 = Normal.
- 1 = Independent with more time and/or effort.
- 2 = Independent; may employ adaptive equipment (electric razor, showers over baths, electric toothbrush, waterpik).
- 3 = Partial assistance by another person required for hygiene activities.
- 4 = Dependent for hygiene activities; always needs help from another person.
Ask the patient: Do you have difficulty with handling utensils, cutting meat or buttering bread? Probe with questions such as the following: Do you spill/drop from utensils/glass? Are you clumsier or slower than you used to be?
- 0 = Normal.
- 1 = Fully feeds self with few accidents; slower than normal.
- 2 = Moderately slow, greater effort; requires assistance in specific situation (cutting meat in restaurant); accidents not uncommon (spills, dropping food).
- 3 = Requires assistance with feeding ≥ 50% of time.
- 4 = Totally dependent; requires full assistance with feeding.
Simple Transfers (eg, to and From Bed)
Note—do not include difficulties with turning in bed when scoring this item. Ask the patient: Do you have difficulty getting onto or off of a bed? Are you any slower than you used to be?
- 0 = Normal.
- 1 = Minimal impairment; may take a little longer, but can accomplish independently.
- 2 = Mild impairment; definitely slower and requires more effort.
- 3 = Moderate impairment; can accomplish independently, but with adaptive equipment (eg, grab bars).
- 4 = Severe impairment; requires assistance from another person.
Bed Mobility (Mobility in the Bed, Turning, Rolling, and Bridging)
Ask the patient: Do you have difficulty turning/rolling in bed or adjusting the bed covers? Do you need to sit up to turn; or, need to use headboard for assistance? Are you slower than you used to be?
- 0 = Normal.
- 1 = Slow and clumsy, but no help needed with turning or adjusting sheets.
- 2 = Can turn alone but with great difficulty; may need compensatory techniques (eg, holding onto headboard of bed).
- 3 = Can initiate, but not turn or adjust sheets without help.
- 4 = Cannot initiate nor complete independently.
Ask the patient: Do you have difficulty standing up from the seated position? Then ask the patient to stand up from the seated position with his or her arms crossed over the chest. Finally, ask the patient whether he or she has difficulty at home, in other environments, has modified seating (eg, firm, high seat).
Score this question on the basis of observation as well as the patient's report. Score 2 if uses arms for push up from chair more than 25% of the time; score 1 if uses arms to push up less than 25% of the time.
- 0 = Never.
- 1 = Slow; may need to “rock” in chair for momentum, but does not need to use the arms.
- 2 = Performs independently, but requires use of arms to push up.
- 3 = Tends to fall back and may have to try more than 1 time using arm rests, may need assistance, especially to arise from deep or soft seating.
- 4 = Unable to arise without assistance.
Ask the patient: Do you notice changes in or difficulty with your walking? Probe with questions such as the following: Do you feel as though you are any slower than you used to be? Are you less confident, especially on rough terrain? Do you stutter step when turning?
Score this question on the basis of observation as well as patient report. Note, if patient uses an assistive device, the score automatically will be 3 unless the device is for a reason other than PD.
- 0 = None.
- 1 = Can walk easily, no restrictions but may have decreased arm swing, less trunk rotation, slow to turn.
- 2 = Can walk independently, but less sure with definite decreased arm swing, less trunk rotation; may have propulsion; abnormal posture; small base of support.
- 3 = May walk with assistive walking device (cane/walker) or person (standby or minimal assistance); gait slower; may have propulsion or festination; multiple steps on turns; requires assistance outdoors.
- 4 = Cannot walk at all or requires maximal assistance.
Fine Motor Movement Performance
Ask the patient: Have you had or do you have problems with any fine motor performance such as the following:
- closing/opening buttons, clasps, zippers; putting on earrings
- fastening or unfastening safety pins; opening twist tops
- using tools (screwdriver, scissors, paintbrush)
- turning pages of a book or magazine (do you turn more than 1 page at a time)
Use other probes as necessary, based on the activities that are normal daily activities for this patient.
- 0 = Normal; no difficulty, or rarely has a problem.
- 1 = Sometimes; notices only occasionally with 1 or more activities or with only 1 specific act.
- 2 = Frequently; notices a problem at least weekly with 1 or more activities.
- 3 = Always, common problem, interferes with daily routines.
- 4 = Severe; cannot perform the movement required.
Gross Motor Performance
This question is designed to identify problems with dual-task performance and motor planning.
Ask the patient: Aside from freezing, have you had or do you have problems with any of the following activities or actions: walking to a closed door, opening by turning the handles, and entering (smoothly) walking toward a table, picking up an object, turning, and carrying with you (smoothly) walking in crowds/narrow hallways moving an object out of the way when your are walking Use other probes as necessary based on the activities that are normal daily activities for this patient.
- 0 = Normal; not difficulty, or rarely has a problem.
- 1 = Sometimes; notices only occasionally or with 1 or more activities.
- 2 = Frequently; notices a problem at least weekly with 1 or more of the activities.
- 3 = always; common problem, interferes with daily routines.
- 4 = Severe; cannot perform the movement required.
Depression (This Item Is Scored Based on the Last 6 Months)
Ask the patient: Over the past 6 months, have you experienced episodes of sadness lasting greater than a day or 2? If the answer is yes, use each statement below to probe regarding the extent of the depression. Also, ask whether there are special circumstances that occurred during this period (eg, death in the family). Note that this does not change the scoring.
- 0 = None.
- 1 = Periods of greater than normal sadness lasting only a few days.
- 2 = Sustained depression lasting greater than 1 week.
- 3 = Sustained depression with vegetative signs (insomnia, anorexia, anhedonia).
- 4 = Depression with suicidal thoughts or intent.
If responses to No. 3 or 4 are yes, then ask the patient whether his or her MD is aware of the depression? If the MD is not aware of the depression, advise the patient that you should notify the MD of his or her response.
Ask the patient: Do you have problems with memory, following a conversation, abstract thinking or problem solving (eg, balancing checkbook)? Have you been aware of these only since you have had PD?
- 0 = Normal.
- 1 = Mild impairment; forgets occasional event (name, place).
- 2 = Moderate impairment; above and disorientation (time, place); may defer decisions to spouse or caregiver
- 3 = Severe impairment; episodes of confusion and disorientation; misinterprets cues simple decision making, problematic, needs some supervision (safety).
- 4 = Dementia; unable to make judgments or problem solve, requires 24-hour supervision.
Ask the patient: Have you changed your routine re: daily/leisure/social activities because of decreased physical ability or PD symptoms that interfere (tremor/dyskinesia) or because of embarrassment associated with PD? Are you as interested in/involved with day-to-day activities and social functions as you used to be?
This question probes changes in involvement in typical daily activities, leisure activities, and social events. The score is based on changes in involvement due to 1 or more of the following: overall motivation, depression, and change in priorities related to decreased physical ability or social embarrassment. Attempt to determine whether the change is related to issues outside of PD (eg, recent retirement; loss of a spouse).
- 0 = Normal.
- 1 = Less assertive than usual; more passive.
- 2 = Loss if initiative or interest in elective activities (clubs, organizations, parties, restaurants).
- 3 = Loss of initiative or interest in routine activities (shopping, reading, household activities).
- 4 = Withdrawn, complete loss of motivation.
Comments: (Make any additional anecdotal comments here for future reference).
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