Patient Journey Map
Substance Use Disorder Treatment and Recovery Experiences
Research Report | June 2022
About the Report
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Addiction Policy Forum’s (APF) Patient Experiences Journey Map was developed through the input of patients in treatment and recovery from substance use disorder (SUD). The map underscores the obstacles and positive points patients encounter across seven distinct phases, from treatment to finding long-term, stable recovery.
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The Addiction Policy Forum was named one of the winners of the National Institute on Drug Abuse “Mapping Patient Journeys in Drug Addiction Treatment Challenge”; funds from this prize were used to support the development of this report.
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The qualitative study included 60 Life Course History interviews of individuals in recovery from substance use disorders across 22 states and Canada.
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Participants Overview​
Of the 60 participants, 55% identify as female (n=33) and 45% male (n=27). ​​The race and ethnicity breakdown of participants is as follows: 60% non-Hispanic White; 17% Hispanic/LatinX; 10% Black or African American; 3% Native American/Alaskan Native; 3% Asian or Asian-American; and 7% multiracial. Participants were from 22 U.S. states and Canada.
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The study included individuals in recovery from a SUD. Seventy-two percent report a single, primary SUD, 28% reported a polysubstance use disorder, and 98% report using multiple substances during active addiction. The breakdown of types of SUD is as follows: 19 participants reported an alcohol use disorder, 17 a polysubstance use disorder, 13 an opioid use disorder, 9 a stimulant use disorder, and 2 a cannabis use disorder.
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Study Design
Addiction Policy Forum collected the data between August 12th and December 12th, 2021. All research protocols, instruments, and communication materials were reviewed and approved by an independent institutional review board. The interviews were conducted by CITI-trained APF staff who are in recovery from a substance use disorder. Sixty interviews were conducted with variance in geography, race/ethnicity, gender, socioeconomic background and SUD type. The project utilized a life course history structure, followed by a rapid qualitative inquiry to analyze the data.
Life Course History Interviews
As a concept, life course theory is defined as "a sequence of socially defined events and roles that the individual enacts over time." Life Course History interviews are a person-centered research method that requires “respondents to provide a subjective account of their life over a certain period of time, described in their own words, across their own personal timelines."
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Life Course History one-on-one interviews empower patients with lived experience to tell their unique stories in a semi-structured interview process with time to reflect and describe their journeys. This qualitative approach to data collection allowed APF to build a comprehensive and accessible patient journey map that illustrates how complex interactions over the course of an individual’s life contribute to the onset, progression, and treatment of a SUD and the elements of long-term recovery.
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Interviews included questions related to substance use; trauma and adverse childhood experiences; treatment episodes; facilitators and barriers to seeking and pursuing treatment and recovery; and other information related to lived experience with addiction and recovery, building upon existing validated instruments as well as open questions and conversation to allow for engagement.
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Instruments used include the Addiction Severity Index (ASI), the Inventory of Drug Use Consequences (InDUC), Adverse Childhood Experiences Screening, and the Global Appraisal of Individual Needs (GAIN). Each interview began by securing consent from the participant. The audio recording and a transcript of each interview were used for text analysis and coding of individual responses.
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Rapid Qualitative Inquiry
The Rapid Qualitative Inquiry (RQI) framework was used to quickly develop a preliminary understanding of the often complicated and varied experiences of accessing treatment and recovery for substance use disorder.
According to Dr. James Beebe, the RQI allowed for a team-based approach to quickly develop an insider's perspective to a specific situation. A small multidisciplinary team of four staff conducted the RQI. The multi-discipline strategy ensured that different perspectives were represented on the team and that individual biases were checked, a key component of rapid qualitative inquiry and the success of the patient journey mapping process.
Patient Journey Map
The Addiction Policy Forum’s Patient Journey Map represents a common set of moments that individuals in treatment and recovery from a substance use disorder experience. While this map does not represent what happens to every individual who engages in treatment for addiction and recovery support, it highlights common elements, bright spots, and pain points in accessing care and finding and maintaining long-term recovery.
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Quotes from patients are included to illustrate the salience of the moment. Common threads and insights are also provided, which can guide practitioners and leaders in the improvement of care and patient outcomes for individuals with a substance use disorder.
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Each phase highlights the bright spots and pain points derived from actual patient feedback, along with common threads and insights relevant to the patient experience.
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Onset and Progression
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Onset is the age at which an individual develops or first experiences a condition or symptoms of a disease or disorder. This section of the Journey Map explains the experiences of onset, specific risk factors for the development of a SUD, as well as health consequences and criminal justice involvement of patients.
Average age of onset is 14 years old.
The average age of first substance use was 14, with the earliest initiation at five years old and the oldest at 19 years old. Patient SUDs include opioid, alcohol, stimulant, marijuana, sedative, and polysubstance use disorder. Nearly one out of four respondents report a primary polysubstance use disorder and 98% report using multiple substances during active addiction.
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For participants with a polysubstance use disorder, 35% reported opioid/stimulant use disorder; 24% alcohol/stimulants; 12% alcohol /opioids; 12% alcohol/marijuana/stimulants; 6% alcohol/sedatives; and 6% marijuana/sedatives.
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85% of patients report a family history of SUD
Eighty-five percent of the respondents reported a family history of addiction, with an average of two previous generations with SUD history.
Frequent childhood trauma
Of the study panel, 90% had at least one adverse childhood event. Of those with childhood traumatic events, the average ACEs score was 4.3, with 47% of patients reporting an ACEs score of 5 or higher. Over 83% experienced household dysfunction, 78% experienced abuse, and 55% suffered from neglect.
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Adverse Childhood Experiences (ACEs) are traumatic events that occur between the ages of 0-17. There are many different kinds of ACEs, including losing a parent, neglect, sexual, physical, or emotional abuse, witnessing a parent being abused, mental illness in the family, and parental SUD. The more ACEs a child has, the more likely he or she is to experience problems later on in life. There are ten types of childhood trauma measured in the ACEs instrument that fall into three categories: abuse, neglect and household dysfunction.
90% of patients experienced household dysfunction, child abuse, neglect
The most common types of household dysfunction experienced were addiction in the household (62%), mental illness or suicide in the household (55%), parental divorce (55%), an incarcerated parent (22%), and domestic violence (17%). Types of abuse experienced were verbal abuse (58%), physical abuse (48%), and sexual abuse (40%).
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3 out of 4 hospitalized due to their addiction
Three out of four patients were hospitalized due to their SUD, most commonly for injuries, infections, overdose, suicide attempt/self-harm, and car accidents.
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70% of patients report justice-involvement
Seventy percent of patients report justice involvement – 63% reported time in jail related to their substance use disorder, 35% participated in a diversion program, such as drug court, and 22% served time in prison.
One participant shared: “I was laying there sick from drinking just a couple days before I was pulled over for a DUI-DWI and I was praying to the Creator to help me because I don't want to be like this anymore to help me stop drinking and then it happened, I was pulled over on August 8th of 2020, I hated it at the time I was sitting in jail because I was going through withdrawals bad but I was also thanking God because I knew I was going to have to stop, I had no choice. I was immediately put on supervision probation and Wellness Court; I believe Wellness Court saved my life, if it wasn't for that, outpatient treatment and the recovery App I would probably have drank myself to death. I couldn't stop drinking in fear of being sick from withdrawals.”
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Damaged relationships and financial issues were most frequent problems caused by substance use disorder
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Significant problems caused by SUD were reported by patients, from damaged relationships, to personality changes, to financial problems.
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One participant shared: "I did a lot of damage to my family, and myself, self-harm, when I would be in blackout drunk I would carve myself up with knives, I was just so full of hatred, and I was abusive to my ex-boyfriend. I never grew up, I never grew up. I didn't graduate high school, I couldn't keep a job. I just never matured mentally."
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Trigger Events
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Multiple trigger events contribute to the decision to get help
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On average, patients shared three separate trigger events that contributed to engaging in treatment, a cluster of events that constitute the “Aha moment.” The events weren’t necessarily close in timing, but represented meaningful moments for the patients.
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Tired, wanting change is the most common reason for engaging in treatment
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The most prevalent reason for engaging in SUD treatment was being tired/wanting change (87%), followed by health reasons (35%), pressure from loved ones (23%), parenting/custody concerns (22%), and pressure from the criminal justice system (20%).
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Another participant shared: “So what stopped me? I just couldn't do it anymore, I was 45. I'm like, what am I doing, you know, shooting dope in my 40's? I've lost everything again, everything. Everything fit in that syringe. My home, my life, my job, my dignity, it all went in there. And I just couldn't sacrifice all of that anymore.”
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Health reasons the second largest driver of engaging in treatment
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Physical injury and health concerns were the second most common trigger events for participants. For example, one participant shared, "Two overdoses and had to go to an infectious disease doctor for hepatitis C." And another individual reported: "Bronchitis, and I was treated for sexual assault two times while under the influence."
Children and family cited most frequently as the bright spots early in the process
Bright spots, or positive moments during the trigger events phase, included children and family, relief, hope for change, and encouragement from others.
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Pain points: Managing isolation and shame
Pain points, the difficulties and challenges faced during the trigger phase, included isolation, shame, lost relationships, and fear.
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Getting Help
The help phase details the process that participants went through to research and identify services and resources for the treatment of their substance use disorder. This phase is largely marked by difficulties and barriers for patients.
Significant barriers encountered as patients try to find help
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Patients identified the accessing help phase as extremely painful, disorganized, and difficult. Poor treatment access was a common experience among participants who experienced systemic barriers to addiction care, including high levels of stigma (32%); the complexity of navigating the substance use disorders care system (25%); wait times (20%); the high costs of treatment (8%); red tape payer policies such as fail first and prior authorization (7%); and transportation difficulties (5%).
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High levels of stigma experienced by patients
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Over 30% percent of participants cite stigma as a significant barrier during the process of finding help and treatment. Patients experience stigma from doctors and other healthcare professionals; stigma from families, friends and the general public, as well as experiences of self-stigma, which occurs when individuals internalize the stigmatizing beliefs and attitudes of the public and suffer negative consequences, including delayed treatment access.
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Pain points, the difficulties and challenges faced during the trigger phase, included isolation, shame, lost relationships, and fear.
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Stigma from healthcare providers is also a pain point for patients. One individual shared: “I think stigma is a really big one, though, just within myself, not with seeking help outside but in having to confront that I have this thing that is frowned on in society.”
Patients most frequently searched for services for themselves
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During the getting help phase, over 60% of patients looked for services for themselves. 42% looked for treatment directly and 20% researched and found support groups to attend.
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Another 22% talked to a loved one/friend, 7% talked to counselor/mental health professional, 7% received a criminal justice referral, 3% called 911, 3% called their insurance company, and 2% distanced themselves from using location or moved back with family.
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The complexity of the system hampers treatment access
Feeling overwhelmed and confused about how to access treatment, repeated attempts to find treatment with no success, and frustration and agony over lack of access points frequent experiences among patients.
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Another participant shared: “Well, I would have been probably in treatment a lot more times if I would have been able to find it some of the times when I looked and didn't have any means to get to it.” Previous treatment and recovery experiences, along with recommendations from friends, family, and a person’s network, frequently form the basis for the treatment pathway selected.
Significant difficulties waiting to access treatment
Long wait times and the pain and discomfort of withdrawal symptoms during that time were a consistent pain point for participants. One individual shared: “It took about a month to get it, though, so it didn't happen right away… that was a long month that was for sure.” Another participant remarked: "The wait, the wait time is long. I was in withdrawal, so the desire to leave and go, you know get well, was really strong."
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Problems navigating insurance
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Participants noted difficulties navigating insurance.One individual shared: “Found it to be difficult navigating the insurance. Having to call back all the time and leave your name, because they want to know that you're really serious. And there wasn't a lot of choices, so there was really only one or two places in this town that I was from in Florida, and that was actually much bigger than where i'm at now but there wasn't Enough beds. You know so. That I remember that being a really huge challenge the phone.”
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Average of 10 years of disease progression and 6 distinct treatment episodes
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On average, patients report 10 years between realizing they have a SUD and finding recovery, participating in an average of 6 treatment episodes that had an additive, or cumulative effect in the success of the most recent treatment engagement. Previous treatment and recovery experiences, along with recommendations from friends, family, and a person’s network, frequently form the basis for the treatment pathway selected.
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Perspectives on Most Frequent Ways Patients Get Help
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Friends and family in recovery a bright spot in the help phase
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Bright spots included having family/friends in recovery, not feeling alone, finding a smooth transition into treatment, and finding a community. However, many patients reported no bright spots at all during this phase.
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Waiting for access and managing withdrawal symptoms are pain points for patients
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Pain Points included waiting for access, withdrawal symptoms, difficulty finding treatment, navigating insurance, financial barriers and family friends not being supportive.
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Care Begins
The care phase details the connection to treatment or other services, and the assessment process if applicable.
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Most patients connect directly with specialty treatment providers
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Previous experiences and treatment episodes guide the first contact and research conducted by patients. Direct engagement with a specialized treatment provider was the most often utilized first point of contact to find help (37%), followed by hospital or emergency room (20%), doctors (15%), mental health provider/counselor (7%), and criminal justice agencies (3%).
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Of note, 18% of participants had no involvement with specialty treatment or recovery services and instead managed their symptoms and sobriety independently. One individual shared: “I had zero contact with the professional world when it came to my substance abuse.”
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Patients often fearful as care begins
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Patients report strong emotions and high levels of uncertainty and fear as care begins. One participant shared: “I did have this mental breakdown in the intake process. Because I just like the revelation that, like my life was going to be changing, and I was also scared as well, so it's like a big mix of emotions and also I was coming down so there's an issue.”
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Stigma encountered in healthcare settings
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Feeling stigma from healthcare providers and other professionals during the care phase was a continued pain point for patients. One individual shared: “I think stigma is a really big one, though, just within myself, not with seeking help outside but in having to confront that I have this thing that is frowned on in society.
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Co-occurring mental health disorders prevalent
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While 68% of patients received a formal SUD assessment, assessments are also needed for co-occurring mental health disorders, physical health, and trauma, as 67% have a co-occurring mental health disorder. Depression, anxiety disorder, and bipolar disorder are the most common diagnoses.
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Trauma experienced during active addiction
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​​Trauma often experienced during active addiction, including physical violence and sexual assault.
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One participant shared: "Women, like me, are not supposed to make it, but we do and I think that we tend to judge and not support women that have made some of the choices I've made and been in some of the situations I've been in. I think that there needs to be more support and longer term care for women that are victims of sexual assault in childhood or otherwise, that have been in the sex industry, because it'll kill you. That have been victims of domestic violence, it's not just about getting clean, right? It's about healing this other trauma, there's a lot of trauma."
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Patients report that repetitive assessments and interviews are triggering and difficult
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A consistent pain point among patients was repetitive assessments and interviews during the care phase, with reports of feeling triggered and interrogated. Patients also questioned the utility of multiple interviews and the coordination of providers.
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Engagement with friendly providers and peers a bright spot in the care phase
Bright spots during the care phase include friendly engaging staff, peers/recovery coaches, and having employment and housing.
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Negative effects of repetitive assessments and isolation are frequent pain points
A consistent pain point among patients was repetitive assessments and interviews during the care phase, with reports of feeling triggered and interrogated. Patients also questioned the utility of multiple interviews and the coordination of providers. Additional pain points included isolation and feeling stigmatized.
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5
Treatment and Recovery
The treatment and recovery phase includes the diverse services and resources accessed by the patient, both within the healthcare system and outside. Patients report that previous treatment episodes provided a foundation for treatment and recovery success. Rather than viewing previous episodes as a failure, the skills and tools learned accumulated over time.
Multiple services utilized, not a single intervention
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On average, patients utilized four different services for treatment and recovery support, not a single treatment or intervention. Services accessed were support groups (88%), counseling/mental health treatment (57%), intensive outpatient treatment programs (52%), followed by residential programs (37%), aftercare programs (30%), medications for addiction treatment (28%), sober living (22%), and faith-based programs (12%).
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Skills and tools from both current and previous treatment episodes helpful
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Patients report that previous treatment episodes provided a foundation for treatment and recovery success. Rather than viewing previous episodes as a failure, the skills and tools learned accumulated over time.
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Layered interventions necessary across 3 key domains – biological, psychological, and social.
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Patient feedback shows the need for layered interventions across three critical domains: 1) biological, or physical health, 2) psychological, and 3) social.
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Biological interventions range from medications for addiction treatment, medical care for other health conditions, taking prescriptions for mental health disorders and other chronic conditions like heart disease and diabetes, as well as self care priorities that include sleep, exercise and proper nutrition. Forty-seven percent of participants utilized an intervention or service to address physical health.
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Three out of four patients required psychological interventions. Psychological interventions include mental health counseling, group counseling, cognitive behavioral therapy, building a relapse prevention plan, identification and awareness of triggers for substance use to include high risk people, places and things, and skills and resource focused strategies like learning new coping skills.
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Ninety-five percent of patients require social interventions. Social components include building a positive social network, commonly through support group participation, new hobbies and activities, and cutting out old friends and the individual’s using network.
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Low recovery literacy among healthcare providers creates challenges
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A pain point in treatment for patients is encountering low recovery literacy among healthcare providers. Patients share the need to learn how to manage their chronic disorder, and frustration when selected providers are not well versed in the supports and layered interventions that are necessary to achieve stable recovery. Patient input suggests the need for a paradigm shift for SUD management to focus on empowering the person with an addiction to manage the disease successfully and to improve their quality of life.
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Managing a SUD requires significant effort on the part of the patient. Whether education and services are embedded with care providers, linkage facilitators, handoffs to peer services, guidance from the primary SUD treatment provider on the components of managing the disease and skills and resources available is beneficial to the patient.
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Encounters with providers without the knowledge to assist in the chronic disease management plan are difficult. One participant shared: “For me it really has to do with the level of care. I was going to when I first learned about suboxone I was literally just going to like what I could best described as a meat market, a place that you would go and you get your prescription. And that was it like as long as you had your money you could get the medicine and there was really no recourse for following treatment, so I really wasn't educated about my disease and what recovery was.”
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45% of patients accessed medications for addiction treatment (MAT)
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Forty-five percent of participants utilized a medication for addiction treatment (MAT) at one point in their life. All three FDA-approved medications were utilized by patients -- Buprenorphine (52%), Naltrexone (48%), and Methadone (33%).
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Low utilization of medications to treat alcohol use disorder
20% of patients with a primary alcohol use disorder (AUD) utilized an FDA-approved medication for AUD at one point in their life for treatment. Of the 30 AUD participants, 33% were prescribed Naltrexone, 20% Acamprosate, and only 10% of participants utilized Disulfiram.
Patient perspectives on MAT positive, though stigma around medication prevalent
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Experiences with MAT were mostly positive, but the stigma around using medications created challenges for patients. One participant shared: "I guess stigma from other people, being on a MAT. I live in... like, it's not a big city. So I would say that this area for a long time has been indoctrinated in the 12 steps. And that includes like medical professionals, I went to my family doctor they wouldn't even entertain anything else other than getting off the methadone. They told me how bad it was and all kinds of things. And then my job, I mean, it was a struggle, because they of course didn't want anybody to know I was on it. And just from friends that weren't using but were in recovery they you know, had an issue with it."
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Another shared: "Dealing with the anxiety and the you know all the guilt and shame from before my use so now I don't have that drug to numb me anymore um and. Honestly, a lot of it is a you know, probably people saying that you're not clean, you know i'm not really clean because i'm one method on so like i'm still using something, which I don't really like get to me, but you used to and then also the weight gain you know and people making fun of me for my weight because i've gained a lot of weight."
Bright Spots: Positive social connections and helpful clinicians
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Bright spots included positive social connections, helpful clinicians, new tools and skills, learning about the disease, and peer/recovery coaches.
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Pain Points: Hard work and managing shame
Pain Points included the hard work/difficulty of treatment, managing shame and self-stigma, cutting out friends/old networks, transportation challenges, and unhelpful home/work environments.
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Lifestyle Changes
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Engaging in treatment and lifestyle modifications are concurrent, not sequential, in finding stable recovery
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Lifestyle changes are cited by patients to be as critical to success as treatment and recovery services. Patients share that the things encountered every day play a critical role in supporting or hampering recovery.
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Building a positive social network is a critical lifestyle change
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Creating a positive, supportive social network is a dominant feature of successful recovery, along with avoiding individuals, places, and other triggers that present memory and physical cues to resuming substance use (i.e. using friends, bars, parties, concerts, boredom.) The exact constellation of triggers is unique to each patient.
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Common lifestyle modifications include avoidance of high-risk people, places, and things (42%), changing friends (40%), becoming honest open-minded and accountable (25%), self-care such as exercise, nutrition, and sleep (23%), and developing a consistent routine (13%).
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Finding a community and feeling happy again are bright spots for patients as they manage lifestyle changes
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Bright spots include creating a positive support network, feeling happy again, being present in life again, being reunited with children/family, and feeling physically healthier.
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Difficulty making amends and stigma around medications are pain points for patients
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Frequent Pain Points include difficulty making amends, triggers associated with high-risk people, places and things, MAT stigma, trouble sleeping, and sadness/depression.
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Ongoing Support
An average of 3 services utilized for ongoing support
Participants shared that they rely on multiple supports in long-term recovery with an average of three services utilized. The most common services were support groups (65%), family and friends (55%), volunteer and service work (38%), and mental health/counseling (22%). Patients in recovery from SUDs continue supports specific to their needs for years or even decades.
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Over half of patients work with a sponsor or professional to help manage their recovery
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58% of patients report having a physician, recovery coach or other professional to help manage their recovery.
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42% have a sponsor
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27% see a counselor
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15% see a psychiatrist
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13% see a physician
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5% have a recovery coach
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Before and After: Active Addiction to Stable Recovery
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Analysis of 60 life course history interviews conducted during the study showed specific themes from onset, progression to treatment and recovery. A word cloud is a visual representation of word frequency where the more commonly used terms in the analyzed text appear larger in the visualization. Themes and tags relevant to active addiction included homelessness, job loss, trauma, children and custody issues, health challenges, school suspension and expulsion, negative impact on friends and family. In contrast, common themes related to recovery include improved relationships, experiencing life, freedom, health and wellness and words like good, love and amazing.
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Having a full life and the feeling of accomplishment are bright spots in recovery
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Health consequences and limited access to services are pain points in recovery
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8
Ways Forward
Key next steps based on the findings of this report include:
1. Reduce barriers to treatment
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Patients encounter systemic barriers to addiction care, including long wait times; high treatment costs of treatment; and red tape payer policies such as fail first and prior authorization. Patients require assistance navigating the substance use disorders care system, determining evidence-based care options, and support for the management of the chronic condition.
2. Ensure stigma training for all healthcare providers
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Research has found that individuals who experience stigma due to an SUD are more likely to continue engaging in substance use, and manifest greater delayed treatment access and higher rates of dropout. Patients in the study shared the difficulty of interfacing with healthcare professionals with stigmatizing beliefs and attitudes. Efforts to decrease stigma should include increasing addiction literacy levels to counteract education gaps and misconceptions about SUDs.
3. Streamline the assessment process
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Patients share the tremendous discomfort and trauma of repetitive assessments and interviews when accessing treatment. Responses include feeling triggered and interrogated and questioning the utility of multiple interviews. Clinicians can streamline the assessment process and share information with other providers.
4. Individualized care and management plans needed
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The majority of patients utilize multiple services for treatment and recovery support, not a single treatment or intervention. Patients on average utilized four services during treatment and three in long-term care management. Lifestyle modifications, such as building a positive social network and discontinuing contact with those still using substances, are critical elements of recovery stability. More education for both patient and providers is needed to reinforce the individualized, multi-faceted management plans needed.
5. Screen for ACEs
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Most patients have experienced multiple adverse childhood experiences, particularly living in a household with SUD. Evidence-based prevention strategies are available and yet underutilized, including screening, early intervention, programs to address ACEs and children impacted by parental substance use disorder, as well as primary prevention interventions. Preventing the development of substance use disorders must be a priority and can change the trajectory of the crisis.
Addiction Policy Forum​
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Addiction Policy Forum aims to eliminate addiction as a major health problem by translating the science of addiction and bringing all stakeholders to the table. The organization works to elevate awareness around substance use disorders and help patients and families in crisis. Founded in 2015, Addiction Policy Forum empowers patients and families to bring innovative responses to their communities and end stigma through science and learning.
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Authors
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Jessica Hulsey, Addiction Policy Forum
Kayla Zawislak, MSW, CADC, Addiction Policy Forum
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© Addiction Policy Forum
All rights reserved. No portion of this book may be reproduced in any form without permission from the publisher, except as permitted by U.S. copyright law. For permissions contact: info@addictionpolicy.org
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Acknowledgments: Supported in part by the National Institute on Drug Abuse (NIDA), National Institutes of Health (NIH), U.S. Department of Health and Human Services (HHS).
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Suggested Citation: Substance Use Disorder Patient Experiences through a Journey Map. Addiction Policy Forum. (2022).
Sales, rights and licensing: To purchase APF publications, see https://www.addictionpolicy.org/store.
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