Social needs screening in hepatology clinic: a qualitative study of patient experience

Abstract

Background

People with chronic liver disease (CLD) and health-related social needs (HRSN) experience poor health outcomes. Therefore, screening for and reducing HRSN in liver clinics may lead to improved CLD-related outcomes. The objective of this study is to assess patient perspective and acceptability of HRSN screening conducted in liver clinic among those with CLD.

Methods

This is a qualitative study conducted using semi-structured interviews from November 2023 to June 2024. Patients with CLD were recruited from liver clinic. Purposive sampling ensured diversity by self-reported HRSN. A previously published interview guide, adapted for this study, was used to assess participants’ perception of HRSN screening. Interviews were conducted virtually in English and audio recorded. Participants were given $50, and interviews were collected, recorded, and transcribed verbatim. Data were analyzed using Crabtree & Miller’s approach creating codes and identifying themes through “open coding”, a process of developing codes for salient concepts as they emerge iteratively during the analysis process.

Results

Fifteen interviews were conducted. Among them, 87% of interviewees were women, the mean age was 57 years old, 67% were Non-Hispanic White, 20% were Hispanic, and 13% were American Indian/Alaska Native; 53% had cirrhosis. HRSN were prevalent: 20% with food insecurity, 53% with financial strain, 13% with financial needs, and 20% with housing instability. Interviews ranged from 9 to 63 min (average time of 25 min). HRSN screening was reported to be acceptable; interviewees felt comfortable or neutral answering questions. Most participants indicated close associations with health and HRSN like stress, transportation needs, financial strain, and social isolation. One patient reported losing their social circle to maintain sobriety as advised. Some expressed a desire for providers to offer referrals to resources. Specifically, participants requested assistance with transportation, finding more affordable medications, and strategies to cope with alcohol use triggers (e.g., isolation or stress).

Conclusions

HRSN screening in liver clinic is pertinent for the CLD patient population. The patient perspective demonstrates that liver clinics provide an invaluable opportunity to help address HRSN.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12876-026-04797-3.

Background

Addressing social drivers of health (SDoH, or social determinants of health) has garnered significant attention in healthcare, particularly in the management of chronic diseases such as chronic liver disease (CLD) [1]. SDoH encompass a broad range of factors that shape downstream social risk factors and social needs, including economic stability, education, social and community context, health care access, and the built environment, all of which can profoundly impact health outcomes [2–6]. Social risk factors are adverse conditions that increase the likelihood of poor health, such as social isolation or neighborhood deprivation. Health-related social needs (HRSN) are specific, tangible, unmet needs, like housing instability or lack of transportation, if unaddressed, may exacerbate negative health outcomes [7].

Given the growing recognition of the impact HRSN have on health, there is an increasing urge to systematically incorporate HRSN screening into healthcare practice [8]. Clinicians and researchers strive to identify HRSN at the time of clinical care to connect patients to healthcare-based interventions and available community resources in order to mitigate their adverse health effects [9]. In hepatology, this approach has the potential to improve outcomes for patients with CLD by addressing HRSN and developing individualized care plans based on patients’ SDoH [10]. Expanding screening opportunities within specialty clinics may provide additional touchpoints to identify HRSN and connect patients with resources.

Our team has focused on integrating a screening tool for HRSN within hepatology practice [11]. The screening tool (Supplemental Materials) was developed locally by researchers at our institution in collaboration with community partners and integrated into the electronic medical record (EMR) [12]. As HRSN screening requires patients to share potentially stigmatizing information [13–15], its effectiveness depends on patient willingness to engage in the screening process. If patients are uncomfortable completing the screener, particularly in hepatology clinic, or feel the questions do not reflect their true needs, the data collected will not accurately capture their challenges, potentially undermining the success of screening [16]. Although HRSN screening acceptability has been demonstrated through multiple other studies particularly in pediatrics and primary care settings [17–19], patient acceptability of screening in general hepatology clinics has not yet been evaluated.

Hepatology care often involves complex treatment plans and long-term CLD management that may be challenging for patients to implement without sufficient social resources and support, demonstrating the importance of understanding patients’ HRSN. The continuity of care in this setting can lead to closer patient-provider relationships, potentially increasing comfort with screening while also making certain topics more sensitive to discuss. Nevertheless, HRSNs are critical to evaluate in hepatology clinics. For example, diet and nutrition are frequently addressed in CLD care and overlap with food insecurity (FI), a key HRSN [20–23]. FI has been associated with advanced fibrosis, worse disease progression, and all-cause mortality among patients with CLD [24–26]. Additionally, heavy alcohol use, which can lead to negative health consequences such as alcohol-associated liver disease, is often discussed in hepatology clinics and is associated with socioeconomic factors including unemployment, wealth, and neighborhood [27]. Moreover, documented HRSN may also influence future psychosocial evaluations for liver transplant candidacy. For these reasons, assessing both HRSN and screening acceptability within this context is critical.

The aim of this qualitative study is to assess patient perspectives on the acceptability of HRSN screening within hepatology care and to explore how patients perceive the relevance of HRSN screening in the management of CLD. Specifically, we sought to understand how patients with CLD perceive the screening process, their willingness to participate, and their comfort level with disclosing personal social needs. Through semi-structured interviews, we gathered in-depth insights into patients’ experiences with screening, perception of its relevance, and feedback for improvement to better serve patients’ needs.

Methods

Participant selection

Participants were selected from 250 adults who completed the HRSN screening at University of Utah Health hepatology clinics between 09/2023 and 02/2024. Individuals interested in participating provided written consent and were invited for interviews. To ensure diversity in perspectives, participants were intentionally selected to reflect a range of demographic characteristics and HRSN prevalence. All research in this study was approved by the Institutional Review Board of the University of Utah (IRB_00163820) and in accordance with the Declaration of Helsinki.

Interview guide

In Byhoff et al.’s prior qualitative study, an interview guide was created to gather insights of adult patients and adult caregivers to pediatric patients on social needs screening [28]. The Byhoff guide was minimally adapted for this study to suit the specific context of this research. The modified interview guide was then reviewed with the Qualitative Research Core team (co-authors, E.L, P.G., S.Z.) to ensure it aligned with this study’s aims (Supplemental Materials).

Semi-structured interviews

Semi-structured interviews were conducted with participants to explore their perceptions of the HRSN screening process. Interviews were conducted virtually in English and were audio-recorded with participants’ consent. Interview duration varied depending on participant engagement and the level of detail provided in responses; however, all participants were asked the same semi-structured interview questions to ensure consistency. Upon completion of the interview, all interviews were transcribed verbatim. Participants were provided a $50 gift card.

Data analysis

The transcripts were imported into the qualitative data analysis software, ATLAS.ti, for coding and analysis. The coding process followed the open-coding Editing Approach, as outlined by Crabtree and Miller [29], which involved identifying and developing codes for salient concepts that emerged during the analysis. The coders developed a codebook to capture key themes, with iterative refinement as new concepts emerged from the data.

To ensure consistency in the analysis, 27% (n = 4) of the transcripts were co-coded by two independent co-authors (EL, PG). These co-coded transcripts were discussed to resolve any discrepancies in the coding process and to ensure inter-coder reliability, an approach that is standard with qualitative analysis practices [30, 31]. After an adjudication process, the master coder (EL) completed the remaining interviews. The study was designed to achieve saturation by ensuring a sufficient sample size and a consistent script. We enhanced saturation, in addition, by focusing the analysis on major and dominant themes. The final themes were used to draw conclusions about participants’ perceptions of the HRSN screening process.

Reflexivity statement

We are a mix of physician-scientists with expertise in primary care, hepatology and gastroenterology, as well as quantitative and qualitative researchers with up to 25 years of experience in clinical-based social needs screening, qualitative methods including semi-structured interviews, and implementation science.

Results

Participant characteristics

Out of the 250 participants previously screened, 196 indicated interest. Ultimately, 28 were contacted and initially responded and 15 participants were then scheduled and interviewed. Interviews were completed virtually from 11/2023 to 06/2024. 87% of interviewees were women, the mean age was 57 years old, 67% were Non-Hispanic White, 20% were Hispanic, and 13% were American Indian/Alaska Native (AI/AN). 53% had cirrhosis and 80% had metabolic dysfunction-associated steatotic liver disease (previously referred to as non-alcoholic steatotic liver disease). Interviews ranged from 9 to 63 min, average time of 25 min. Variability in interview length showed differences in participant engagement and the number of discussed social needs. Additional demographic, social, and clinical characteristics are included in Table 1.

Table 1.

Demographic Characteristics of Participants (N = 15)

Identification Number	Age (years)	Gender Identity	Race or Ethnicity	Education Level	Current Occupational Status	Annual Income	Etiology of Liver Disease
1	73	Female	White	4-year college degree or more	Retired	>$100,000	Alcohol-associated cirrhosis
2	68	Female	White	2-year college degree or some college, no degree	Retired	$35,000 - $99,999	MASH cirrhosis
3	68	Female	Hispanic/ Latino/a	2-year college degree or some college, no degree	Retired	>$100,000	MASH cirrhosis
4	66	Male	White	4-year college degree or more	Retired	$35,000 - $99,999	MASH cirrhosis, hepatocellular carcinoma
5	39	Female	White	4-year college degree or more	Employed	$35,000 - $99,999	MASH with fibrosis
6	71	Female	White	4-year college degree or more	Retired	$35,000 - $99,999	MASLD
7	57	Female	Hispanic/ Latino/a	Less than high school graduate/GED	Unemployed	*answered ‘Don’t know’	Hepatitis C/MASH with fibrosis
8	63	Female	White	4-year college degree or more	Employed	>$100,000	MASLD
9	44	Female	White	2-year college degree or some college, no degree	Employed	$35,000 - $99,999	Primary biliary cholangitis cirrhosis
10	65	Female	White	2-year college degree or some college, no degree	Retired	$0 - $34,999	MASH with fibrosis
11	60	Male	AI/AN	2-year college degree or some college, no degree	Unemployed	*answered ‘Prefer not to answer’	Alcohol-associated cirrhosis
12	62	Female	White	2-year college degree or some college, no degree	Unemployed	$0 - $34,999	MASLD
13	44	Female	White	*unanswered	Disabled	$35,000 - $99,999	MASH/Autoimmune hepatitis cirrhosis
14	29	Female	Hispanic/ Latino/a	4-year college degree or more	Employed	$35,000 - $99,999	MASLD
15	52	Female	AI/AN	2-year college degree or some college, no degree	Unemployed	$0 - $34,999	MASH cirrhosis

Definitions: MASH metabolic dysfunction-associated steatohepatitis, MASLD metabolic dysfunction-associated steatotic liver disease, AI/AN American Indian/Alaska Native

Social needs were prevalent among the interviewees; 47% reported food insecurity, 13% had transportation needs, 53% had financial strain, and 20% with housing instability. None of the participants reported a lack of social support.

Main themes identified during the interviews included (Fig. 1): (1) perceived relevance of HRSN screening (2), ambivalence about screening methods and a desire for frequency that reflects changing circumstances (3), openness to support despite recognized system limitations, and (4) CLD contributes to vulnerability to HRSN.

Fig. 1.

Examples of Quotes Within Each Theme Identified Through Patient Interviews. Main themes identified during the interviews included: (Theme 1) perceived relevance of HRSN screening, (Theme 2) ambivalence about screening methods and a desire for frequency that reflects changing circumstances, (Theme 3) openness to support despite recognized system limitations, and (Theme 4) CLD contributes to vulnerability to HRSN

Perceived relevance of HRSN screening (Table 2)

Table 2.

Patients’ Feelings about Health-Related Social Needs Screening

	Illustrative Quotes
What was it like?	• It was straightforward. I didn’t have any problem answering them. (ID02) • It’s like you—you’ve gotta take a look at yourself and realize what you’ve been doin’—what you put your body through. And to get that second chance is like [something] you really gotta take serious. So that’s what I got out of it. (ID15)
How did they feel?	Negative • I guess there was times where I was worried about rent… there [were] times where I was worried about food costs. That’s still something I talk about with certain friends. It’s not something you really like personally think about or are mindful of…just bringing up that reflection of, these are very stressful things that have happened in my life…I read these and I think these would all be super stressful for anybody if they were going through those things. (ID14) Neutral • I thought they were pretty straightforward. And I…didn’t feel insecure about any of them…I mean it was pretty good. I’m a pretty positive person so I, I try to keep a good attitude with things. But yeah, I think it was fine. (ID09) • Just same as I always feel, just regular. I mean, I’ve answered lots of surveys, it was no big deal. (ID06) Positive • Actually I was feeling pretty good, like I was helping. That’s how I was feeling. (ID10) • They look at the whole community, the whole person rather than just looking at your illness. And so it made me feel good that, as a medical facility when you go in, that it almost feels like there’s more compassion there. That you’re able to express, yeah, I do need extra help because these medical visits and these medical bills…can take you financially, emotionally, just like everything when you’re very ill or have a serious condition. Even if…you have to travel often, like every three months, and [your condition is] not really too life threatening…but somebody’s supposed to get regular care, those people probably would also feel like, oh, this makes me feel like I’m recognized. When I take these surveys I feel like my doctor’s office sees me as a person and not just like a diagnosis. (ID13)
Health Relevance	• Well if you don’t have friends or a strong support system, I feel like that can make a person more reclusive and kind of depressed and lonely. And I think when you are suffering with depression, loneliness, isolation, that your health does like suffer because of it. (ID09) • Now some of these are related to some of my health issues for the specialties that I see so they might be beneficial to that doctor if they ask. (ID12) • Well I think with your family and friends and connections, your social connections, they help you to get out of the house and maybe do more activities than what you would be doing otherwise. (ID02) • I’m just all about resources for people and education and stuff because walking away from this survey there’s some people who may not understand that those things do relate to these things and helping and addressing or starting to try and address these concerns or issues will help with physical health. (ID14)
Should doctors know?	• They should probably know. It’ll make a difference on how people respond to them and/or the treatments as recommended. (ID04) • Probably in addition to an illness because I think the providers could maybe suggest different things. Maybe there’s a lesser expensive medication or something they can do to…help them choose a less expensive option that might be just as good. Or give them information for how… they can get assistance with the medication or something like a medication card… So yes, I don’t think it’s interfering in their business. (ID02)
Feelings About Specific Questions	• One took me more back to my childhood. I mean the thoughts were more childhood because I think we had little less money in my childhood than I do [now]. (ID02) • Well I never really, I mean answered these kinda questions, it was the first time. And a lot of them have just become, become thinkin’ about what I was doing like in a bad way. Kind of a, like stay away from alcohol. (ID10) • It just, you know, brought more of an awareness that things aren’t going good for a lot of people. (ID08)

Participants reported that completing the screener was straightforward, with most expressing no significant challenges in answering the questions. However, one person expressed difficulty due to a language barrier, specifically in understanding certain terms.

“For me, because I’m—like I said, I’m learning how to talk proper English, and I don’t know a lotta the words. Like I don’t—like, some of the words, like anxiety, like—for me, it was kind of confusing, with like am I upset, depressed, anxiety, all of that in one. It’s like sometimes it’s too many answers for one question. And it’s always like, you have to pick one. But what about if you have all of them?” (ID07, female, 57yrs).

Most respondents reported feeling comfortable or neutral while completing the survey, and some indicated the questions made them feel as though healthcare providers were demonstrating a deeper level of care and concern.

“I felt good. I felt like—yeah. Like there was a deeper meaning or something—there’s more to the visit, people cared more” (ID13, female, 44yrs).

When asked about the relevance of the topics covered, most people indicated that the questions were pertinent to their health, including their CLD. Many recognized the interconnectedness of social needs and health.

“Like, the concept of a food desert. If you can’t get to food, you can’t eat the food, basically…like the whole Maslow’s Hierarchy…if you are worried about where you’re gonna get rent, then how—like, you can’t take care of yourself…they’re all interconnected. And if your basic needs aren’t being met, you can’t get to another level of health” (ID05, female, 39yrs).

When questioned whether doctors should be aware of patients’ HRSN, the majority expressed the belief that it is important for providers to have this knowledge, especially when it has direct implications for conditions like CLD.

“I think certainly when [SDoH] impact, such as liver disease. If it’s social strain…someone would present yet another reason to perhaps drink” (ID01, female, 73yrs).

There were, however, some screening questions that resulted in mixed responses such as the question asking about one’s ability to pay for rent and utilities. They led to negative feelings for some participants, while others found them to be representative of their personal experiences.

“[I feel] probably stressed. Just like are these all, are these all factors I really should be thinking about on a regular basis to keep myself safe. I don’t think I’ve been doing them…I’m like, oh, these things probably could help but I don’t know how to help them right now” (ID14, female, 29yrs).

“They’re not issues that are sensitive or a struggle for me, but I can definitely see where it would not feel very good to talk about. But, personally, for me, it—no, I didn’t have any problems” (ID05, female, 39yrs).

“Well, I would just say just generally it described my, what the, what I’m goin’ through” (ID11, male, 60yrs).

Ambivalence about screening methods and a desire for frequency that reflects changing circumstances (Table 3)

Table 3.

Approach to Health-Related Social Needs Screening

	Illustrative Quotes
Method of Asking	• It wouldn’t matter to me. I feel like I can be honest either way. I do, for me I don’t think that would be a problem. I do think that there will be people that won’t be 100% honest to their doctor or to somebody saying hey, how often are you drinking things containing alcohol? I mean if they know it’s not gonna be, they’re not gonna be judged it’s gonna be like they’re, you know. But no, it wouldn’t bother me. (ID09) • I think a form. I think it’s pretty intimidating to be in a doctor’s office and maybe offered, right, if you would like us to ask you verbally or otherwise, we’ll just do this paper form or this Goggle form on this I-pad, right? It’s like if you need verbal assistance, we can help you. (ID14) • Maybe I should just fill it out. I tend to go on about things. (ID12) • ‘Cause on a form we feel more—even if it had our name, we’d still feel more—not like confidential but almost like nobody’s gonna read that anyway kind of feeling. You can just checkmark yes and no and circle or whatever. And then—but if you put—if somebody came in and asked, it may feel as though, depending on how it’s asked, that they—that there’s like a genuine care that when you get to the clinic do you need any other thing—do you need anything from us other than just this visit today. Can we help you with this? We know that this health condition is a heavy one, like that. (ID13)
Survey Format	• I feel that the tablet was super-efficient. It takes all the answers and like plugs it into your system right away, no paper is used, totally down with the tablet. (ID05) • Oh a computer’s fine. Just as long as I can pull it up or [name]’s around to pull it up for me. (ID01) • It’s probably easier on a computer. (ID06)
Survey Administration	• I wouldn’t care if the doctor was asking too. But it almost feels like, before you see the doctor, we have a little pre-appointment kind of thing. And during that pre-appointment we’ll make sure that all of your information is correct in the computer…But we’ll also do the—[screener]. (ID13) • It wouldn’t matter to me. (ID02)
Frequency of Screening	• Anywhere between six months and a year. Because everybody’s situation may change within that amount of time. (ID03) • Probably yearly. I don’t, I don’t know that it would need to happen more often than a year. But I would think that once a year would be good. (ID09) • I think that maybe, for me, every day is a different day, because like I’m learning how to live sober. So…probably twice a week. (ID07)
Healthcare Settings for Screening	• I do think emergency department may be difficult to do so because people are in crises and it’s hard to think about those things, so I’d say any type of crises work. (ID15) • No, I think you should do the surveys everywhere because, yeah, I wouldn’t mind now. But, yeah, it wouldn’t matter where you would ask me to fill ‘em out, as long as I’m not like, dying. (ID07) • Well, it might be the same thing for the emergency department. I’d want the focus to be on what I was there for, not necessarily, you know, everything else that’s going on in my life. (ID08)
Electronic Health Record (EHR) Concerns	• Yeah, I think that it, it, you know, if it was necessary, I think yes. (ID10) • I would like it restricted just to the people that have—need to know. (ID08) • Yeah, just probably the doctor I see. (ID11)
Timing of Screening	• I kinda like answering it before because quite frankly when I’m finished…I’m ready to go. (ID02) • I was gonna say before. I don’t, yeah before. I would think before whether it’s a few days before or whether it’s like you’re just sitting in the room and then you’re filling it out before you actually have your visit. (ID09)
Survey Question/Topic Suggestions	• The family history is really, really interesting…Course we didn’t know this was in our family till just about the time I went to the doctor. I think it would’ve been helpful knowing and growing up with the knowledge because I probably would’ve watched my diet and exercise. And as soon as I started putting on weight, I probably would’ve been doin’ a little more, being a little more proactive, I guess. So anyway that’s, I wish I had known when I was younger, I guess. But I know now so I try. It gets kinda hard. (ID02) • Yeah, I think looking at their family…because if we’re gonna ask somebody, do you use alcohol, are you exercising then that’s kind of digging into that next little like, what are you doing outside of this office…to either impact your health better or worse. But then it’s kind of like we leave it there. It’s like are you exercising, okay, good. But then we don’t go anything deeper like are you feeling real stressed out about something? Is that why you’re—you know like that kind of thing. (ID13)

When asked about approaches to administer the HRSN screeners, participants expressed ambivalence about how screening is conducted. Some participants felt more comfortable answering questions verbally with a healthcare professional, while others favored completing the screener independently to maintain privacy [32].

“I think some people like to talk with people and [are] not real good about filling out surveys” (ID04, male, 66yrs).

“Probably a form because people get embarrassed” (ID10, female, 65yrs).

Regarding the format, most did not have a strong inclination but acknowledged the convenience of electronic formats compared to paper form.

“I’m good with anything… as we have moved into the electronic age, it’s not gonna be a problem but we still have that generation of people that don’t like electronics” (ID09, female, 44yrs).

The majority of participants did not have a strong opinion for whether a doctor or clinic staff should ask the questions.

“I would have no preference. The question’s a question” (ID03, female, 68yrs).

Another stated that nurses are often most present during visits and could help facilitate the conversation:

“I’d say the nurse ‘cause they are mainly the ones in the room with you” (ID15, female, 52yrs).

For frequency of HRSN screening, 14 participants answered, and multiple responses were allowed. Nine expressed a preference for screening at least every 6 months or as often as each visit, 2 preferred an annual screening, and 3 indicated they would be comfortable with screening only once. Most did not have a definitive answer on how often HRSN screening should occur, as they recognized that social needs can change rapidly and believed that screening frequency should match this.

“It depends on…how many times you go into the doctor. So if things change fast, you could lose your job tomorrow or anything like that. So probably every time you come in…they should be aware of that” (ID10, female, 65yrs).

Nearly all patients preferred to be screened before their appointment, either during the pre-visit check-in or in the waiting room, to give their healthcare team time to review the information. However, a few preferred being screened after the appointment, especially if they were feeling stressed before their visit.

“I would say probably after the appointment. Before the appointment, you’re thinking about what you’re gonna talk to the doctor about” (ID10, female, 65yrs).

While privacy concerns were mentioned, most patients were comfortable with their HRSN information being stored in the EMR, as long as access was limited to healthcare providers involved in their care.

“I wouldn’t want it to be like public information, but it wouldn’t bother me if anybody on my health care team saw it” (ID09, female, 44yrs).

“It’s kinda, like you said, overwhelming, ‘cause it’s kinda scary for us Spanish people to fill out surveys. ‘Cause we always think somebody’s gonna come and get us because we did drugs or because we’re not from here or just because they want to get into our business” (ID07, female, 57yrs).

Openness to support despite recognized system limitations (Table 4)

Table 4.

Need for and Interest in Resources

	Illustrative Quotes
Should doctors help?	• I feel like they’re tired and overburdened. And I feel like they need help themselves. So I feel very torn about asking them to take on additional tasks. However, those people need help, too. So I don’t—I mean, yes, but with like, a very understanding heart, do I say that. (ID05) • I don’t know if they should so much necessarily provide it but maybe have resources available where the people can go. Or unless they’re really in a desperate need and they’re gonna go to bed hungry that night then you might want to. But usually there’s resources out there if people just know how to access them. (ID02) • They can refer me to somebody else to help me deal with those kinds of questions or situations. (ID04)
How should doctors help?	• A flier in the area or even in the pre-questionnaires that we get every appointment. Do you wanna talk further with your doctor about this? Or would you like a follow up call about this? But I really like when we have those little fliers that say, hey, if you’re struggling with this, ask about this. So I would just say even having some resources posted nearby or in the office would be beneficial. (ID14) • It should be available, and it would be up to that person if they want it or not, if they feel they need it. It may not be at that moment, but eventually dealing with trauma and everything I’ve been here because I hide my feelings a lot and it took a lot to ask someone to talk to. (ID15)
Want help?	• Cause transportation to the [University] for me is—can be an issue. And having cancer, my money is tight. So they are issues for me. They might not be down the road, and that’s what I’m saying, if they re-ask these questions when things change. (ID12) • I just have trouble with transportation, that’s it. But I have to—get an Uber every morning and that’s expensive. (ID15) • We do have struggles. I mean, it’s hard payin’ insurance and it’s hard payin’ food and it’s hard payin’ everything actually. Our power bill’s terrible… as long as I’m always willing to work there’s always a job. Sometimes I’ve had three jobs during my life. I was the biggest volunteer, I volunteered for everything. But you know that doesn’t pay for Social Security. (ID10)

Participants felt that doctors should be involved in addressing patients’ HRSN, understanding these needs may influence their ability to manage their health and overall health outcomes.

“They should know. It should be forthcoming from the patient so that the doctor knows what to prescribe… [such as] prescribe a generic drug… maybe [the doctor] would get something that’s a lot cheaper” (ID10, female, 65yrs).

Respondents emphasized the importance of healthcare providers directing patients to assistance, with many suggesting that referrals to social work or community services could assist patients in accessing support for their social needs.

“Well, I think if there are resources available for people, just like there was somebody said, I think there’s a program for transportation, or something, you can look into that…I never would’ve known. So I feel like whoever told me that it was a gift and I know I was at the liver clinic when I was told that…So like for me, if you tell me, look into that then I can come home and I’d be able to kind of search around and find some resources or whatever. But other people do not have access to the resources and they need help. To have somebody in the office, even if there’s a little closet, and you go in and it’s part of the plan that they just say we just wanna touch base and make sure that…all of these areas you’re doing good. Kind of like that it takes a village feeling” (ID13, female, 44yrs).

While nearly all participants did not express a strong desire for immediate assistance, a few communicated interest in receiving help with specific needs, such as food, transportation, and paying utilities.

“If they had reasonable suggestions or options, then yes. ‘Cause transportation to the [University] for me is—can be an issue. And having cancer, my money is tight” (ID12, female, 62yrs).

This demonstrates that, while many patients may not initially seek out help, they would welcome support when their social needs become more pressing or change over time.

The results indicate that while patients have reasonable expectations of their healthcare providers, they recognize the limitations in the scope of care doctors can offer.

“It’d be nice, but I don’t think they’ve got time…there’s not enough doctors and there’s so many sick people. And I think they’re all overworked if you wanna know the truth” (ID10, female, 65yrs).

“I don’t expect my doctor to find me friends…or give me money… I think they do really well making sure that their patients are not hurting, not struggling, if there’s anything that they can do that they’re gonna try and get them to a resource that can help them” (ID09, female, 44yrs).

CLD contributes to vulnerability to HRSN

For many participants, their experience with CLD has had significant implications not only on their health but also on their social needs and daily lives. Several reflected on the struggles they faced before and after their diagnosis, including challenges related to alcohol use, emotional trauma, and financial stress.

One shared how the combination of alcohol use and underlying trauma contributed to their liver condition, and how therapy has played a crucial role in their recovery. They emphasized the emotional and psychological toll that chronic illness and substance use can have, suggesting that therapy and emotional support are key components of their alcohol recovery.

“After I sobered up, I recognized that I did have a lot of trauma in my life… therapy completely strongly affected my mind where I cannot have a substance to run to” (ID15, female, 52yrs).

Another patient highlighted how their CLD had significantly changed their physical health and daily routine, as well as the practical challenges of managing their health.

“I did have a lot more physical activity before I felt completely exhausted, working and then coming home and just having no energy… financial questions of course are gonna be more pertinent when you have a diagnosis and have to see specialists for it” (ID09, female, 44yrs).

Several participants suggested additional questions that could improve the relevance of the survey particularly in hepatology clinics.

“How has your life been altered because of your diagnosis?” (ID09, female, 44yrs).

“To a certain point all of these kinda relate to people being depressed. And so maybe that’s what your survey could do is dig in. Course you do kinda ask it, I remember something about if you, there were some kinda depressed, depression type questions…And sometimes people don’t know they’re depressed” (ID02, female, 68yrs).

Discussion

In this study, we sought to understand patients’ perspectives on HRSN screening conducted in hepatology clinics. Overall, participants viewed screening as an acceptable, pertinent tool for healthcare providers to understand patients’ health with an increased awareness of the broader social context impacting their wellbeing. While participants did not have a preferred method of screening, they expressed a desire for HRSNs to be considered alongside their medical care for a holistic approach to their CLD. Many participants stressed that they expect providers to be aware of and responsive to social needs rather than to ‘solve’ them, framing the provider’s role as a connector to resources rather than a direct problem-solver. Screening also created a structured opportunity for patients to discuss their social circumstances and feel that their experiences were acknowledged, ultimately enhancing their relationship with the healthcare system. Despite this general acceptance, some participants acknowledged that confronting HRSNs could be overwhelming, reflecting the ongoing debate about the effectiveness and relevance of HRSN screening in clinical contexts [33, 34]. These findings suggest that thoughtfully including HRSN screening in liver clinics, in addition to traditional settings like primary care, may result in more comprehensive and practical care for patients with CLD.

While HRSN screening has most often been conducted in primary care settings, evidence suggests that screening is not consistently implemented or fully addressed in routine care, indicating that additional opportunities to identify HRSN in clinical settings may be beneficial [35, 36]. Hepatology clinics uniquely provide opportunities to identify and address social needs for patients with CLD for a number of reasons. Patients with CLD often require longitudinal care for years and are seen at least annually in hepatology clinic, which for some, may be the healthcare clinic they visit most frequently. Moreover, CLD care includes pharmacotherapy, frequent diagnostic testing, counseling in lifestyle modifications such as optimization of nutrition, physical activity, substance use, and, at times, liver transplant candidacy. These aspects of CLD care intersect with social needs such as food insecurity, transportation barriers, and financial strain [37–39]. Lifestyle modifications, in particular, are difficult to achieve without reliable access to food, transportation, and social support. Hepatology providers’ awareness of these HRSNs can facilitate the development of individualized and feasible treatment plans for nutrition, alcohol cessation, and medication adherence. For example, the social context of medication use is particularly relevant in cirrhosis management, where therapies such as lactulose require consistent adherence and may depend on the availability of social support. Additionally, identifying social needs within hepatology care may allow earlier connection to resources for patients approaching liver transplantation, where psychosocial stability and access to resources are critical components of candidacy evaluation and are often outside the scope of practice for primary care. Lastly, this perspective is consistent with a growing movement to integrate HRSN screening within specialty care settings [40–42].

Although this study did not evaluate interventions to address HRSN, participant feedback provided insight into feasible approaches to integrate screening into busy hepatology clinics. Practical strategies informed by these findings may include standardized screening processes, referral pathways to community services for patients with needs, and periodic re-screening. Participants identified both advantages and challenges associated with different approaches, emphasizing that the most effective method would depend on the clinical setting and accessibility of privacy. This was consistent with prior studies, which also report flexibility regarding the screening format and approach [28, 43, 44]. These results suggest that the focus should be on making the screening process accessible and efficient, rather than on who conducts it or how it is delivered.

Prior research points to the critical challenges that providers encounter when attempting to manage HRSN in clinical practice, including a lack of resources or time to respond to the findings [8, 33, 45–47]. Our study echoes these concerns, as many patients expressed a desire for providers to inform them of available community resources and acknowledged that not all patients have the ability or means to search for services. This corresponds with the challenges outlined in literature, suggesting that while screening for social needs is crucial, additional work is needed to ensure providers can effectively respond to these needs, and that patients are offered support and directed to resources that could help alleviate barriers to care [33, 48, 49]. Literature on the integration of HRSN screening into clinical practice is expanding [50, 51], however, optimal screening and resource linkage strategies are still being defined, contributing to persistent gaps in connecting patients with HRSN to interventions [52, 53].

Although based on a limited qualitative sample, our findings suggest a bidirectional relationship between chronic disease such as CLD and HRSN, creating a complex cycle exacerbating challenges patients face in managing their health effectively [6, 10, 54, 55]. Financial strain, emotional stress, and logistical barriers are intensified by the physical and emotional toll of living with CLD, further limiting patients’ ability to access resources or engage in healthy behaviors [10]. As outlined by prior research, these burdens are further compounded by mounting medical bills, less work capacity, and increased financial stress [6, 55]. Addressing medical and social needs together is essential to improving health outcomes and quality of life for patients with CLD [10].

Several limitations should be considered. This was a single-center study with a relatively small sample size, which may limit generalizability. Although 250 participants completed the HRSN screening and most expressed interest in being interviewed, only a small group responded to scheduling efforts. While the research team made specific efforts to include participants with higher levels of social needs, selection and response biases may have influenced the perspectives shared by the participants since recruiting individuals with HRSNs proved challenging. However, the $50 compensation may have more impactfully motivated participation among individuals experiencing financial strain. Interviews were conducted virtually and in English only, which may have contributed to a predominantly White, non-Hispanic participant group. This may have excluded individuals with limited digital access, lower health literacy, or non-English speakers, limiting representation of culturally diverse populations and unique perspectives on social needs screening. Future studies should include more diverse, multilingual, and accessible approaches to better capture the perspectives of the entire patient population.

Conclusions

In conclusion, our qualitative study provides insights into patient perspectives of HRSN screening within CLD care. While limited by a small, single center sample, participants generally viewed screening as acceptable and relevant to their health, particularly when framed as a tool to inform care and connect patients to resources. Screening serves as an important first step to consider and meaningful impact will depend on how subsequent interventions can address needs to facilitate effective disease management and health outcomes. By fostering an understanding of how CLD and HRSN intersect, we can develop more patient-centered interventions that ultimately improve health outcomes and reduce health disparities.

Authors’ contributions

R.G.K. (Rebecca.g.kim@hsc.utah.edu): study conception, study design, interpretation of data, drafting of the manuscript, critical revision, approval of the final versionA.B. (April.ballantyne@hsc.utah.edu): study design, data collection, interpretation of data, drafting of the manuscript, approval of the final versionE.L. (lancas15@msu.edu): study design, data collection, data analysis, interpretation of data, approval of the final versionP.G. (patrick.galyean@hsc.utah.edu): study design, data collection, data analysis, interpretation of data, approval of the final versionN.S (nasser.sharareh@hsc.utah.edu): interpretation of data, critical revision of the manuscript, approval of the final versionA.W. (andrea.wallace@nurs.utah.edu): interpretation of data, critical revision of the manuscript, approval of the final versionJ.M.I. (john.inadomi@hsc.utah.edu): interpretation of data, critical revision of the manuscript, approval of the final versionS.Z. (susan.zickmund@va.gov): study design, interpretation of data, critical revision of the manuscript, approval of the final versionM.B.C. (molly.conroy@hsc.utah.edu): study conception, critical revision of the manuscript, approval of the final versionJ.C.P. (Jennifer.price@ucsf.edu): study conception, study design, critical revision of the manuscript, approval of the final version.

Funding

The research reported in this publication was supported (in part or in full) by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number(s) UM1TR004409. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This work was also supported by the American Association for the Study of Liver Diseases (AASLD) Foundation’s Clinical, Translational, and Outcomes Research Award (R.G.K.).

Data availability

The data that support the findings of this study are not publicly available due to participant confidentiality but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

All research in this study was approved by the Institutional Review Board of the University of Utah and in accordance with the Declaration of Helsinki. Informed consent was collected from each participant prior to (1) completion of any surveys and (2) participation in semi-structured interviews.

Consent for publication

Not applicable.

Competing interests

A.W. has received travel funds and stipends from NIH study sections and PCORI, as well as honoraria from the AAMC, Northwell Health, and Boston Children’s. J.M.I. is a recipient of a research grant from Exact Sciences. J.C.P. has received research support paid to her institution from AbbVie, Gilead, VIR, and Cepheid. R.G.K., A.B, E.L., P.G., N.S., S.Z., and M.B.C. do not have any disclosures relevant to this manuscript.