Background Nonalcoholic steatohepatitis (NASH), a progressive form of fatty liver disease is often considered a ‘silent’ disease in its early stages. As there are limited data on the lived-experience of NASH the aim was to explore the patient-perspective of living with NASH.
Methods Semi-structured, face-to-face, concept elicitation (CE) interviews were conducted with NASH patients recruited via a tertiary care centre in VA, USA. The interviews explored patients’ experiences of NASH symptoms and the impact of NASH on the way patients feel and function. Interviews were audio-recorded, transcribed and analysed thematically. Patients completed a sociodemographic questionnaire. Medical data were extracted from patient charts.
Results 23 NASH patients were interviewed (females=18[78%]; %]; mean age =55.9[31.0-73.0 yrs]): 16 (69.6%) had biopsy-diagnosed NASH (F1=1[4.3%]; F2=5[21.7%]; F3=10[43.5%]), 7 (30.4%) had phenotypic-diagnosed NASH. Mean (SD) years since diagnosis=3.9(2.9). None had evidence of hepatic decompensation. Patients were overweight/obese (mean BMI = 34.8 [range 26.1-45.0]). Common comorbidities included hypertension (n=15;65.2%), high cholesterol (n=11;47.8%) and T2DM (n=14;60.9%). Key symptoms reported included pain in upper right quadrant (abdomen) (n=14; 60.9%), fatigue (n=18; 78.3%), poor sleep quality (n=12; 52.2%), cognition problems (impaired memory [n=13; 56.5%]; reduced ability to focus / concentrate on tasks [n=11; 47.8%] and pruritus [n=10; 43.5%]). Symptoms were reported to impact on physical functioning (impaired capacity to walk short distances) and ability to conduct daily living tasks e.g. household chores/personal care. NASH impacted the quality of family relationships; e.g. pain and fatigue reduced patient’s ability to play with children/grandchildren or limited engagement in family life. Patients also reported a negative impact on physical/emotional aspects of intimate relationships. Patients reported hiding their symptoms to reduce worry for family members. Relationships with friends were affected; patients felt less able/willing to participate in social activities. Some patients worried about perceived NASH-related stigma and/or reported self-consciousness related to body shape/appearance. Anxiety and low mood were also reported. For the 10 (43.5%) patients in employment, NASH impacted ability to concentrate on or complete work-related tasks.
Conclusions The interviews identified key symptoms experienced by NASH patients and the impact of NASH on patient health-related quality of life. These data challenge the dogma that NASH is an asymptomatic condition and support future patient-centred research initiatives in NASH.
