Tracking Patient Outcomes

To truly understand a patient’s progress in treatment, programs need to monitor change over time and adapt treatment and supports. Measurement-based care refers to the use of standardized measures to assess progress, identify problems, and use patient data to adapt individual clinical interventions in real time.

Providers should also identify the patient’s personal goals for treatment and monitor how their ability to achieve those goals progresses over time. It is important for providers to understand when patients are not progressing and to change the treatment plan accordingly.

Registries are databases that can be used to collect, manage, and evaluate information about the health status or health care services received among a population of patients. Developing and maintaining a registry or similar tracking tool can help a practice obtain the information needed to monitor and adjust patients’ treatment.

By actively reviewing the registry or tracking tool, the team can use data at both the individual patient and program levels to improve the quality and effectiveness of the care provided. The AIMS Center of the University of Washington has developed a Care Management Tracking System as well as other resources for registries.

The Substance Abuse and Mental Health Services Administration (SAMHSA) defines recovery from substance use and mental disorders as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.”1 The steps taken along the path to recovery will differ from one person to the next. Therefore, monitoring patient progress should take a similarly holistic approach.

The range of measures that are important to monitor and address may include those related to:

  • Continued substance use,
  • Retention in treatment,
  • Mental health and well-being,
  • Functioning or quality of life, and
  • Progress with patient-articulated goals.

North Star

Providers regularly monitor patient progress and response to treatment (potentially every visit) and adjust the treatment approach if progress is not occurring. They maintain a care registry and use it to facilitate treatment planning for individual patients and to improve program quality over time.

How Do You Do It?

Track Select Outcome Measures

Medication-assisted treatment (MAT) programs should identify which outcome measures they will monitor and which processes or assessments will be used to track these measures. Some tools will help track measures across domains, while others may require a specialized assessment. Primary care providers in busy clinical settings may want to use shorter instruments. For example:

Illicit Substance Use. Continuing to use illicit substances, such as opioids and other drugs, or a recurrence of use is another important gauge of patient progress. Providers should not consider patients who use illicit substances to be “failing” treatment. They may just need changes to their treatment plan. For example, patients who continue to use opioids may not be receiving a dosage of medications for opioid use disorder high enough to address their withdrawal symptoms and cravings and may need more frequent visits for counseling and prescriber assessments.

Providers should also remember that polysubstance use with alcohol, tobacco, marijuana, stimulants, and other drugs is common. MAT aims to treat the symptoms of opioid use disorder, not all substance use conditions. Therefore, patients who continue to use substances may need additional behavioral therapies or interventions to address these other issues. Learn more in Challenging Patient Behaviors.

Patients should always be given the opportunity to self-report using illicit substances. Sharing this information can help strengthen communication and the therapeutic alliance between providers and patients. Providers should be careful to respond in a nonjudgmental manner. If patients disclose they began using opioids again, providers should try to understand the reasons or stressors that led them to using and create a plan to get back on track. Learn more in Prevention and Response to Recurrence of Use.

Also, it is important to incorporate routine urine drug screenings into the program’s workflows and to use the results to guide the treatment plan. The American Society of Addiction Medicine offers guidance on the Appropriate Use of Drug Testing in Clinical Addiction Medicine.

Retention. Retention in treatment is defined as the period from when a patient is admitted to the program to the time a patient is discharged or stops participating. Extensive research and strong evidence show the relationship between retention in treatment and positive patient outcomes for individuals with opioid use disorder and other types of substance use disorders.2, 3

Generally, longer treatment durations lead to better patient outcomes; however, there is a lack of consensus in the field regarding minimum treatment duration. A 2016 article in the New England Journal of Medicine concludes that 12 months should be the minimum treatment duration,4 while others report better results for even longer periods of treatment.5

Retention is a simple concept, but it can be confusing in practice since both program admission and discharge/cessation can be ambiguous. In particular, it can be hard to define retention in a low-barrier model of MAT, such as a bridge clinic, in which patients may be in and out of treatment. Depending on a program’s goals or approach to treatment, other outcomes may be more important to track. In the case of a bridge clinic, the number of patients who are successfully connected with long-term treatment or a higher level of care may be more representative of a positive outcome.

For the sake of simplicity, this Playbook defines admission as the first treatment event (e.g., the first receipt of medication or counseling session). Ideally, the interval between first contact between the patient and the program and admission/receipt of medication or other services will be as brief as possible.6, 7 Treatment retention rates for a program are reported for a specified period. Ideally, programs will measure 30-day, 60-day, 90-day, 6-month, and 1-year retention rates. Monitoring all of these retention rates can allow programs to identify trends or potential issues.

However, understanding that resources may be limited, the most critical retention rates to monitor are 30 day and 1 year. Most patients who drop out of treatment do so within the first month, and those who stay in treatment for longer than a year often have noticeably improved long-term outcomes. Practices should track patient participation from admission to discharge/cessation of participation for every patient. Each calculation should include all patients whose admission date was before the rate period. Then the percentage of patients who remained in treatment at the end of that period is calculated.

For example, to calculate a 30-day retention rate, a practice needs to include all patients whose admission date was more than 30 days in the past as the denominator and the number who remained in the program at the 30-day mark as the numerator. A common convention is to count a 30-day interruption of treatment as a discharge/cessation, even if the patient later re-enters treatment.

Treatment Plans and Goals. Adherence to the treatment plan is another useful measure to help monitor a patient’s progress, although it may be more subjective. For example, providers can track the patient’s attendance at appointments or engagement with external behavioral health services or recovery supports.

Missed appointments may be an indicator that the patient is struggling and perhaps has returned to using opioids. However, it could also reflect problems with child care or other types of legitimate challenges related to social determinants that complicate participation in treatment. Providers should not jump to conclusions but should follow up with the patient to understand the lack of engagement or attendance.

Personal goals are a key component of Patient-Centered Care Plans, as they allow patients to define their own “success.” For some, their main goal may be to reduce use of opioids, rather than stopping altogether. Others may want to reunite with children or other family, maintain steady employment, or seek a college degree. Providers should raise these goals often with patients and ask if they have made any progress or if they need any additional supports or strategies to meet these goals.

Mental Health. As previously discussed in Co-Occurring Behavioral Health Disorders, comorbid conditions such as depression and anxiety can significantly affect the ability of a person with opioid use disorder to manage his or her condition. Therefore, programs should also monitor patients with those comorbidities, using appropriate tools, such as these:

Quality of Life and Functioning. While decreasing or eliminating substance use is often the primary goal of treatment, providers should understand the important role of quality of life, satisfaction, and functioning to recovery. Therefore, measures that reflect these concepts should be tracked and monitored to assess the patient’s progress over time. A number of instruments are available to assess quality of life, but none yet developed specifically address those with opioid use disorder.8 They vary widely in terms of content and administrator or respondent burden. Examples include:

The HealthMeasures database links to additional measures to assess well-being and life satisfaction, as well as physical, mental, and social health.

Establish Policies, Processes, and Protocols

Practices should have systematic protocols to monitor patient progress and to respond, as appropriate. For example, practices should have a protocol for outreach to patients who do not adhere to the treatment followup schedule or for referring patients to higher levels of care, either voluntarily or administratively. MAT programs will also need a systematic process to help collect, store, and analyze patient data to monitor outcomes over time.

These systems will vary widely depending on the program’s capacity and resources. Some programs may have an electronic health record (EHR) system that allows providers to enter the results of assessments and other relevant measures and quickly pull reports that demonstrate progress over time. Other programs, however, may have limited capabilities with their EHR and will need to use spreadsheets to track patient measures and analyze data.

What Not To Do

  • Don’t discharge or “fire” a patient who is not making progress. Patients who are struggling need more help, not less.
  • Don’t forget to consider a patient’s personal definition of “success” as a critical outcome. 

Resources

References

  1. Substance Abuse and Mental Health Services Administration. SAMHSA’s Working Definition of Recovery. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2012. Publication No. PEP12-RECDEF. https://store.samhsa.gov/product/samhsas-working-definition-recovery/pep12-recdef. Accessed June 12, 2019.
  2. Simpson DD, Joe GW, Brown BS. Treatment retention and follow-up outcomes in the Drug Abuse Treatment Outcome Study (DATOS). Psychol Addict Behav 1997;11(4):294-307.
  3. Sordo L, Barrio G, Bravo MJ, et. al. Mortality risk during and after opioid substitution treatment: systematic review and meta-analysis of cohort studies. BMJ 2017 Apr 26;357:j1550. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5421454/ . Accessed June 12, 2019.
  4. Schuckit MA. Treatment of opioid-use disorders. New Engl J Med 2016; Jul 28;375(4):357-68.
  5. Hser YI, Evans E, Grella C, et a;. Long-term course of opioid addiction. Harv Rev Psychiatry 2015; Mar-Apr;23(2):76-89.
  6. NIATx. The Case for Access and Retention ; n.d. https://chess.wisc.edu/niatx/Content/ContentPage.aspx?NID=81 . Accessed June 12, 2019.
  7. Strauss E. Increasing Retention. Strengthening Treatment Access & Retention-State Implementation (STAR-SI); n.d. https://niatx.net/StarSI/Annual_Meeting07/9.45_Retention.pdf . Accessed June 12, 2019.
  8. Strada L, Vanderplasschen W, Buchholz A, et al. Measuring quality of life in opioid-dependent people: a systematic review of assessment instruments. Qual Life Res 2017;26:3187-3200. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5681984/
    pdf/11136_2017_Article_1674.pdf . Accessed June 12, 2019.