Table 1 Outcome measures—quality indicators for Parkinson’s disease care outcome measures

Communication, Education, and Continuity Indicators:

1. Because people with PD may develop impaired cognitive ability, a communication deficit and/or depression, they should be provided with: both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary consistent communication from professionals involved

2. Families and caregivers should be given information about PD and PD with dementia (PDD) (if applicable), standards for diagnosis and symptom assessment, clinical and social services for which they are eligible, and the support services available including caregiver resources and dementia care (if applicable).

3. All Veterans with PD and their caregivers (if applicable) should be referred to one or more Parkinson’s disease advocacy and support organizations for information, education, and support including caregiver resources and dementia care (if applicable). (Referral to PD advocacy and support organizations)

4. People with PD and their caregivers should be given the opportunity to discuss end-of-life issues with appropriate healthcare professionals.

5. People with PD should have a comprehensive care plan agreed between the individual, their family and/or caregivers and specialist and secondary healthcare providers.

6. All Veterans with PD should be able to identify a provider or a clinic that they would call when in need of medical care or should know the phone number or other mechanism by which they can reach this source of care. (Identify source of care)

Reporting Indicators:

7. If a Veteran with PD or his or her family expresses concern about driving safely, then the clinician should advise the patient not to drive a motor vehicle and/or request the DMV retest the patients’ ability to drive, and/or refer the patient to a driver’s safety course that includes assessment of driving ability, in accordance with state laws. (Actions regarding driving safety concerns)

8. All Veterans with PD who report excessive daytime sleepiness should be instructed not to drive a motor vehicle. (Excessive daytime somnolence and driving restrictions)

9. All Veterans with PD who are wheelchair bound or demented should be assessed for evidence of abuse (physical, sexual, financial, neglect, isolation, abandonment). (Assessment for abuse)

Diagnosing Parkinson’s Disease:

10. The diagnosis of PD should be reviewed regularly (6–12 month intervals seen to review diagnosis) and re-considered if atypical clinical features develop.

Assessment:

11. All Veterans with PD, on at least an annual basis, should be assessed for the following:

   Ability to operate a motor vehicle. (Assessment of driving ability in PD patients)

   Depressive symptomotology

   Dementia

   Excessive daytime somnolence

   Presence or absence of UI during the initial evaluation and every 2 years thereafter.

   Functional status. (Assessment of functional status)

   Speech and swallowing difficulties

   Orthostatic hypotension

   Gastro-intestinal symptoms including constipation

   Psychosis, hallucinations and delirium

   Erectile dysfunction

   Weight (at every visit)

   Occurrence of recent falls

Medication Use:

12. If a Veteran with PD is prescribed a new drug, then the prescribed drug should have a clearly defined indication documented in the medical record. (Documented indication for newly prescribed medication)

13. For all Veterans with PD, the outpatient medical record of every physician should contain an up-to-date medication list. (Up-to-date medication list)

14. If a Veteran with a new diagnosis of PD has impairment in activities of daily living and is prescribed either levodopa or a dopamine agonist (DA), then the tradeoffs of initiating dopamine agonists versus levodopa should be discussed with the patient. (Dopamine agonist vs. levodopa as initial treatment)

15. If a patient has PD and has motor fluctuations, and is prescribed levodopa, then he or she should be educated about timing of intake of dietary amino acids and its impact on response to levodopa. (Timing of levodopa and dietary amino acids)

16. Clinicians should be aware of dopamine dysregulation syndrome, an uncommon disorder in which dopaminergic medication misuse is associated with abnormal behaviors, including hypersexuality, pathological gambling and stereotypic motor acts. This syndrome may be difficult to manage.

Management of Motor Symptoms and Dystonias:

17. If a Veteran is receiving therapy with a dopaminergic agent (levodopa or a dopamine agonist), then they should be assessed for the presence of motor complications (wearing-off, on-off fluctuations, or dyskinesia) at least every 6 months. (Assessment of motor complications)

18. Off-Period and Early Morning Dystonias Usual strategies for wearing-off can be applied in cases of off-period dystonia.

Management of Non-Motor Complications of Parkinson’s Disease:

19. If a patient with PD is newly treated for depression, then degree of response to at least two of the nine DSM-IV target symptoms for major depression and, if he or she is taking antidepressant medications, medication side effects should be documented at the first follow-up visit to the same physician or to a mental health provider within 4 weeks of treatment initiation.