A total of 30 AIH patients from 16 different states in the United States (US) participated in this study (Table 2). The majority of participants were female (96.7%) and Caucasian (93.3%). Most participants were also married (73.3%) with children (76.6%) and completed at least some college education or more (93.3%). The average age at the time of study completion was 53 years (yrs.) old (standard deviation [SD] = 12.6 yrs.) and included an average AIH duration of 4.2 yrs. (SD = 4 yrs). Current medications used to treat AIH included prednisone (33.3%), budesonide (13.3%), azathioprine (53.3%), 6-mercaptopurine (3.3%), mycophenolate mofetil (30%), sirolimus (6.7%), tacrolimus (3.3%), and cyclosporine (3.3%). Twenty-two (73.3%) participants were aware of their most recent liver biopsy findings, and 22.7% reported no fibrosis, 18.2% stage I, 18.2% stage II, 27.3% stage III, and 13.6% stage IV fibrosis.
Participant Experiences with AIH
Most participants discussed their experiences freely in response to the interview questions, often providing anecdotes of events in their lives that exemplified living with AIH. The participants’ remarks could be divided into three overarching topics: (a) disease symptoms and medication side effects, (b) the impact of AIH and symptoms/side effects on quality of life, and (c) interactions with healthcare providers and recommendations for future research.
Disease Symptoms and Medication Side Effects
Symptoms and Medication Side Effects. Participants described a variety of symptoms and medication side effects that affected their quality of life. The symptoms included fatigue, sleep disturbances, neurological symptoms, pain, anxiety, and depression. The medication side effects included weight gain, mood disturbance, osteoporosis, myopathy, edema, and cataracts.
Fatigue. Most participants identified fatigue as a major symptom associated with AIH or its treatment. Some were extremely tired most of the time, while others noticed that their energy levels tended to wax and wane with “good days and bad days.” One participant stated, “Some days I have real tired spells where I feel like I could just kind of melt into a puddle.” A few participants reported drinking more caffeinated beverages since diagnosis to make it through the day. Several participants indicated that fatigue interferes with their ability to perform “easy” everyday tasks. One participant stated, “The fatigue controls my life.” Many participants were unsure what caused their fatigue, but all hoped for improvement in this symptom.
Sleep disturbances. Participants identified sleep disturbances as a highly problematic symptom of AIH. Some experienced interrupted sleep, and a few woke up frequently in the middle of the night to urinate. Others had insomnia and changing or variable sleep patterns. One participant stated, “I’m either up for two days and can’t sleep or I need to sleep 20 h a day.” Some participants attributed their sleep problems to treatment with prednisone.
Neurological symptoms. Participants described neurological symptoms that they associated with AIH. Some experienced “brain fog,” and others noticed that their memory had significantly deteriorated since diagnosis. Others had difficulty retrieving simple words. Many attributed these symptoms to their steroid regimen. One participant stated, “Because I'm still on a pretty high dose of prednisone, my biggest thing I think is brain fog. I forget things. I have trouble getting my words, finding my words.”
Anxiety and Depression. Participants reported experiencing anxiety that they attributed to their AIH. For many participants, the anxiety was related to issues related to disease burden and uncertainty. For example, several were anxious because they needed laboratory work done every few months and felt like a “nervous wreck” in the days leading up to their laboratories. One participant stated, “My labs are great, and I still feel nervous every time it's lab time or every time it's imaging time.” Others were anxious because reliable information about their disease was not available and the progression of their disease was uncertain. Participants also reported depression that they attributed to their AIH. Some reported feeling hopeless, pessimistic, and lonely. One participant stated, “I feel kind of like a loner in it sometimes with not having someone to talk to or relate to in regard to what I’m going through.” Some participants had no hope that their quality of life would improve.
Medication side effects. Several participants indicated that the side effects from medications used to treat AIH, especially steroids, were highly problematic. One participant stated, “I don’t understand how these medications are just taking every little bit of quality of life that I may have had.” Many complained about weight gain due to prednisone. Some participants attributed “moodiness,” osteoporosis, myopathy, edema, and cataracts to their steroid regimen. One participant explained, “Once when I was on prednisone, I was sent home [from work]. I was a little argumentative during one of our meetings.”
AIH and Quality of Life
Work life. Participants indicated that AIH affected their work life in several ways. Several who were employed felt completely drained at the end of a full workday. One participant stated, “If it's a particularly stressful day, that night I can't do anything.” To deal with fatigue, many took frequent breaks but felt guilty for doing so. Due to the SARS-CoV-2 pandemic, most were working from home at the time of the interview, and several felt anxious about eventually returning to work in-person. A few participants emphasized the importance of advocating for themselves in the workplace so they could continue to work despite their fatigue.
Many participants decided to work less or retire since being diagnosed with AIH, primarily because their extreme fatigue made it difficult to manage their responsibilities. Several switched to less demanding positions in their workplace. One participant stated, “A 12-h shift as a nurse is not something I can do strictly as my sole income, so I've had to diversify my work, my job, and find other jobs that are just an 8-h office job to supplement.” A few who were unable to work but too young to retire had to rely on disability income. Others who had retired before being diagnosed with AIH had to cut back on their volunteer activities.
Relationships with family and friends. Participants reported that AIH affected their relationships with family and friends. Most felt their friends and family did not understand the disease or what it was like to live with it, especially because AIH has no overt physical manifestations. For example, many believed their friends and family were unaware of the disease-related fatigue the participants experienced. One participant stated, “We don't have a broken leg or a finger like that they can visually see. So, I think sometimes family tends to forget that we are sick and that I do need time to rest and take a breather.” A few felt “guilty” or “annoying” when they had to ask friends and family for help because the participants were too tired to do routine tasks. Some participants minimized their AIH symptoms so that family members would not worry about them. One participant downplayed her condition to avoid questions from others. A few pushed through symptoms to complete daily responsibilities as not to burden others. One participant stated, “I tend to push and just keep going and put my head down and just keep going, doing what I have to do, work, take care of family, whatever.”
Several participants worried about contracting an illness from family members, especially COVID-19, because the participants were immunocompromised. Many struggled to balance their safety and their need to spend time with their family. One participant stated, “I had a situation recently where I really wanted one of my grandsons to be able to come and stay with me, but I know that he's not isolating himself and he's out with his friends. I just didn't feel safe about doing that. At the same time, I felt bad, and I felt guilty about not being able to do it.”
Most participants also described positive support they had received from family and friends. Some reported that family members would attend appointments with them to help advocate for their health. Other participants who struggled with severe fatigue had friends or family members that would help out with everyday chores like going to the grocery store. One participant explained that her son now makes dinner every night, so she can rest when she gets home from work.
Social life. Participants indicated that AIH affected their social life and experiences being with others in a variety of ways. Many had to frequently miss out on social events and cancel plans because they were exhausted. A few had difficulty explaining why they could not drink alcohol in social situations and felt others were uncomfortable drinking around them. One participant stated, “My friends have been pretty accommodating, but they think because I can't drink, they have to put all the alcohol away. Then I feel like I'm holding back that they're having fun.” One participant who was diagnosed at a young age had a hard time refusing alcohol when everyone around her was drinking. One participant stated, “Social gathering is centered around alcohol and everybody's drinking and wondering why you're not drinking.” Some participants felt living with AIH made them generally uneasy around others and were self-conscious when their illness was brought up in social settings. Others experienced social anxiety, lack of self-confidence, and self-image problems that they attributed to their AIH and that decreased the overall quality of their social life.
Leisure activities. Most participants could not participate in leisure activities they previously enjoyed. The participants mentioned having to give up activities such as hiking, gardening, golfing, and line dancing. Most could no longer do these hobbies because of pain and fatigue, and a few had to spend all their energy on daily tasks and thus had no energy left for leisure activities. Some could continue their hobbies in moderation or by taking breaks when needed. One participant stated, “I miss being able to walk in nature and enjoy the peace and the beauty that's all around us. And as time and age has gone I've gotten older, and the disease has progressed, unfortunately, that's not something that I can enjoy anymore. So, I drive, I do a lot of driving in parks or wooded areas to get my fall fix.”
Participants indicated that one activity that was affected by AIH was traveling. While they once enjoyed traveling, some found managing things such as daylight-saving time changes and staying on schedule with their medications made traveling a “nuisance.” Others felt they were no longer able to travel at all. Several participants had to limit outdoor leisure activities because they had to avoid too much sun exposure. Many took extra precautions to protect their skin when under the sun, and a few were unable to tolerate the heat even with precautions. One participant stated, “If it's hot at all, I get red the face and I feel like I'm going to pass out.”
Diet and exercise. Many participants reported that they were following a specific or modified diet since being diagnosed with AIH. A couple of participants avoided certain foods to reduce medication side effects, while others changed their diets to be healthier overall. Several chose to see a nutritionist on their own, and others did so because of a hepatologist’s recommendation. Almost all were interested in understanding the relationship between diet and AIH, but several were frustrated because limited information was available to them about the dietary effects on disease onset and AIH management.
Several participants indicated that they either increased their exercise regimen or became more consistent in their workout routines. One participant stated, “My diagnosis made me more active. But I'm able to tolerate the activity too because I know how important it is.” Several were motivated to exercise due to weight gain after starting prednisone. Conversely, many switched to less intense, low-impact exercises to avoid pain, and many were unable to exercise at all due to pain or fatigue. Many who could exercise needed extended recovery periods following physical activity. Several participants experienced aches and pains the day after exercising. One participant had “bad flare-ups,” and another stated, “I tried walking more, but then I would find that the next day I felt I was run over by a truck.” Many were careful how they allocated their energy and were cautious of how their physical activity would affect them later.
Healthcare and Research
Some participants had overwhelming positive interactions with their healthcare providers. These participants reported easy access to care for their AIH and had good communication with their providers. This made them feel they were provided high quality care.
Interactions with healthcare providers. However, participants had multiple negative experiences with their providers. These participants described poor communication in the office and in follow-up messaging. They also felt that their provider showed no interest in their symptoms. Some participants felt “abandoned” by providers who did not provide timely or directed follow-up care. One participant stated, “I feel like I've been diagnosed and then dumped out into my home.” Participants indicated that providers often did not have expertise in AIH, failed to provide adequate explanations of disease management, gave conflicting information about disease, and dismissed participants’ symptoms. One patient stated, “There's so much conflicting information even from one doctor to another. You don't know who to trust. You don't know what to believe.” Another participant complained, “I’ve had these symptoms and the exhaustion and this pain that no doctor will address.” Several participants were dismayed that treating physicians did not take a holistic approach to their care, failed to treat them as a “entire person,” or never addressed their quality of life. Few participants also perceived stigma, often associated with liver disease, even when at a provider’s office by the provider or their staff. Such stigma is grounded in the erroneous beliefs that AIH is contagious or caused by alcohol consumption or risky behaviors. Many participants felt judged, embarrassed, and ashamed to report their disease to primary care doctors and clinic staff. One participant stated, “I’m so sick and tired of being treated like a drug addict.”
Recommendations for research. Participants suggested that AIH research should center not only on finding a cure but on management of symptoms that dramatically reduce the quality of their lives. Many recommended that researching the mental health aspects of AIH should be a priority in order to reduce the stigma associated with these symptoms. Some called for research on diet regimens that could combat liver inflammation and symptoms associated with AIH. Most subscribed to an integrated model of hepatology and nutrition as they believed food choice or dietary alterations may be able to alter disease course or reduce troubling symptoms. A few participants mentioned interest in the study of alternative strategies such as acupuncture, massage, and supplements as approaches to manage AIH symptoms.