New Dementia Measures Address Disclosure of Diagnosis to Patients
Abstract
Patients with dementia and their caregivers want to be able to make realistic plans and thus do not want information about a diagnosis to be hidden from them.
Updated quality measures for the care of patients with dementia, including a new measure to encourage disclosure of a diagnosis to patients and family members, have been published by a joint work group of APA and the American Academy of Neurology (AAN).
Robert Roca, M.D., believes that psychiatrists may be especially equipped for the sensitive dialogue required when disclosing a dementia diagnosis to a patient and family members.
The document, “Updated Dementia Management Quality Measures,” was written by a 26-member work group convened by the two associations and published this month in their respective journals, the American Journal of Psychiatry and Neurology. It covers nine broad areas of assessment, diagnosis, and treatment and may be adopted for future reporting in the Medicare Quality Payment Program; if so, the measurement set is also likely to be incorporated for use by psychiatrists and other clinicians participating in PsychPRO, APA’s mental health registry.
“Driving improvement in clinical practice and care of dementia is the purpose of the new measures,” psychiatrist Robert Roca, M.D., M.P.H., M.B.A., co-chair of the work group, told Psychiatric News. “The work group was formed for the purpose of updating quality measures that would be truly relevant to clinical practice and that would help align everyday clinical practice with guidelines for quality care.”
Roca is vice president and medical director at Sheppard Pratt Health System and chair of the APA Council on Geriatric Psychiatry.
The nine broad areas addressed in the measure set are disclosure of diagnosis, education and support of caregivers, functional assessment, screening for behavioral and psychiatric symptoms, screening for safety concerns, screening for driving safety, advance care planning, screening for pain, and treatment of dementia. (A description of the measures is given in the box at left; specific metrics associated with each measure are in the AJP article.)
New Measures Intended to Drive Improvement in Dementia Care
A 26-member work group of APA and the American Academy of Neurology developed a set of measures for the assessment, diagnosis, and treatment of dementia. They are as follows:
Disclosure of Dementia Diagnosis. Percentage of patients with a diagnosis of a qualifying dementing disorder or disease whose diagnosis has been disclosed to them and, if available, their primary caregiver.
Education and Support of Caregivers for Patients With Dementia. Percentage of patients with dementia whose caregiver(s) were provided with education on dementia disease management and health behavior changes and were referred to additional resources for support in the last 12 months.
Functional Status Assessment for Patients With Dementia. Percentage of patients with dementia for whom an assessment of functional status was performed at least once in the last 12 months.
Screening and Management of Behavioral and Psychiatric Symptoms Associated With Dementia. Percentage of patients with dementia for whom there was a documented screening for behavioral and psychiatric symptoms, including depression, and for whom, if screening positive, there was also documentation of recommendations for management in the last 12 months.
Safety Concern Screening and Follow-Up for Patients With Dementia. Percentage of patients with dementia or their caregiver(s) for whom there was a documented safety screening in two domains of risk: dangerousness to self or others and environmental risks, and for whom, if screening positive, there was documentation they were provided with recommendations for their mitigation, which may include referral to other resources, in the last 12 months.
Driving Screening and Follow-Up for Patients With Dementia. Percentage of patients with dementia for whom there was a documented screening for driving risks and for whom, if screening positive, there was also documentation they were informed of alternatives to driving in the last 12 months.
Advance Care Planning and Palliative Care Counseling for Patients With Dementia. Percentage of patients who have an advance care plan or surrogate decision maker documented in the medical record (or documentation in the medical record that an advance care plan was discussed but the patient did not wish or was not able to name a surrogate decision maker or provide an advance care plan); and percentage of patients’ surrogate decision makers who received comprehensive counseling regarding ongoing palliation and symptom management, and end-of-life decisions within two years of initial diagnosis.
Pain Assessment and Follow-Up for Patients With Dementia. Percentage of patients with dementia who underwent documented screening for pain symptoms at every visit and, if screening positive, also had a documentation of a follow-up plan.
Pharmacological Treatment of Dementia. Percentage of patients with dementia or their caregivers with whom available guideline-appropriate pharmacological treatment options and nonpharmacological behavior and lifestyle modifications were discussed at least once in the last 12-month period.
An especially important and potentially controversial addition to the set is the measure assessing the percentage of patients who are informed that they have been diagnosed with dementia.
“This may be the measure most likely to provoke the most discussion,” Roca said. “Because we do not currently have treatments that can definitively alter the course of dementia, clinicians are sometimes apprehensive about revealing a diagnosis of dementia because of the concern that patients will be very demoralized. In fact, the data show that people want to know the diagnosis and want to be able to make plans. Clinicians need not be afraid to take this subject up directly with patients and their caregivers. For the most part, people don’t want this information hidden from them and want to be able to make appropriate plans.”
Roca said the dialogue with a patient about a diagnosis of dementia may call especially for the skills of a psychiatrist. “People in the field will recognize that this is a conversation that needs to be opened with special sensitivity and that timing is crucial,” he said.
Other important changes to the measure set involve combining separate measures for screening and management of behavioral and psychiatric symptoms associated with dementia into one measure and a new measure assessing pharmacologic treatment of dementia.
Roca told Psychiatric News that the new measures may be incorporated into the Medicare Quality Payment Program and PsychPRO.
APA Director of Research Philip Wang, M.D., M.P.H., said one of the benefits of PsychPRO is that it will allow APA to develop, test, and deploy new quality measures like the dementia measures.
“The multidisciplinary work group should be congratulated on its hard work to update these critically important quality measures and ensure they are clinically relevant,” Wang told Psychiatric News. “Going forward, PsychPRO can also help in this process by allowing the field of psychiatry to develop, test, and deploy new quality measures that truly capture the value of psychiatric care.”
PsychPRO was created by APA to assist members with quality reporting requirements as well as meeting the requirements for Maintenance of Certification by the American Board of Psychiatry and Neurology.
The original Dementia Management Quality Measurement Set was developed and published in 2013 by AAN as part of the AMA’s Physician Consortium for Performance Improvement (PCPI).
Some of those original measures were incorporated into the Physician Quality Reporting System, previously the main quality reporting program for Medicare. The program has been replaced by the Merit-Based Incentive Payment System (MIPS).
In 2015, the AAN and the APA formed the multidisciplinary work group to improve the original measures and to identify areas calling for new ones. The work group consisted of 26 members from 21 organizations including physician, patient, caregiver, advanced practice provider, psychologist, payer, and nursing representatives.
“APA worked closely with the AAN to come up with a set of measures that would reflect the state of the art in dementia care,” Roca said. “We are hoping that members who take care of persons with dementia will look at these measures as useful guides to what constitutes quality of care.” ■
