key: cord-0963506-kq35hhh1
authors: Arevalo, Yaquelin A.; Murillo, Ariana L.; Ho, Erica W.; Advani, Shailesh M.; Davis, LaShara; Lipsey, Amanda Faye; Kim, Mindy; Waterman, Amy D.
title: Stressors and Information-Seeking by Dialysis and Transplant Patients During COVID-19 Reported on a Telephone Hotline: A Mixed Methods Study
date: 2022-05-10
journal: Kidney Med
DOI: 10.1016/j.xkme.2022.100479
sha: 3da8a820f8e20747a5c823dbcb79340c05874df2
doc_id: 963506
cord_uid: kq35hhh1

RATIONALE & OBJECTIVE: In early 2020, we activated a telephone hotline, the COVID-19 Kidney/Transplant Listening and Resource Center (KTLRC) to learn more about the impact of COVID-19 on the stress and information-seeking behaviors of dialysis and transplant patients. STUDY DESIGN: A mixed-methods study including semi-structured qualitative interviews probing about emotional, health and financial challenges experienced and quantitative surveys assessing depression and anxiety levels and information-seeking behaviors. SETTING & PARTICIPANTS: 99 participants [28 dialysis patients, 71 transplant patients] varying by race/ethnicity [Hispanic (25.3%), White (23.2%), Asian (24.2%), and Black (24.2%)] shared their COVID-19 experiences and information seeking behaviors by telephone. Interviews and surveys were conducted from 6/17/2020 to 11/24/2020. ANALYTICAL APPROACH: Qualitative themes were identified using thematic analysis. Frequencies were calculated to assess levels of depression and anxiety using the Patient Health Questionnaire for Depression and Anxiety (PHQ-4) and types of information-seeking behaviors. RESULTS: Seven themes and 16 subthemes emerged. Themes of commonly reported stressors include postponing medical visits, decreased accessibility of getting medication, difficulty in receiving up-to-date patient focused health information and receiving dialysis supplies, and delays in medical appointments. Other stressors include losses of health insurance and income, and increased vigilance in behaviors to avoid contracting COVID-19. Fifteen participants had moderate to severe anxiety and depression symptoms and reported more frequent and severe panic attacks post-COVID. Participants sought emotional support from family, friends, and faith communities. They also commonly obtained information from news media and reported needing more transplant-specific updates about COVID-19, and frequent communication from their kidney and transplant specialists. LIMITATIONS: This convenience sample of individuals willing to share their experiences through a telephone hotline may not generalize to all dialysis and transplant patients; stressors related to COVID-19 for these patients continue to change. CONCLUSIONS: As the impact of the pandemic continues, needs-based interventions tailored for the kidney and transplant community including access to mental health resources, education, and support for care transitions should continue.

While the world has been combating the challenges of COVID-19, immunocompromised patients such as patients with chronic kidney disease (CKD) and solid organ transplants are even more vulnerable. Due to high rates of medical comorbidities, including obesity, diabetes, and chronic heart disease, CKD patients who contract COVID-19 have poor outcomes. [1] [2] [3] [4] The impact of COVID-19 on mental health nationally has been severe, with depression and anxiety rates tripling overall. 5 Before COVID-19, depression and anxiety were more prevalent among dialysis patients 6 compared to the general population, and this trend was exacerbated by COVID- 19 . In a study conducted in Italy during COVID- 19 , kidney recipients reported psychological and emotional symptoms such as anxiety, depression, anger, and fear caused by long periods of isolation and potential contagion. 7 Another study conducted with organ recipients in China between March -April 2020 found that 30.5% of participants struggled with PTSD and 13.4% with depression. 8 This study found that transplant recipients with depression scored significantly lower on all areas of a Quality of Life Questionnaire, with reports of worsened physical health, pain, vitality, and emotional state. To truly understand patients' lived experience during a global pandemic, we created the COVID-19 Kidney and Transplant Listening and Resource Center (KTLRC), a telephone hotline to learn, in real-time, about the specific challenges and stressors that dialysis and transplant patients were facing and to disseminate transplant-related education about COVID-19, including mental health resources. Hotlines have previously been shown to help manage health issues, such as anxiety depression, and suicide prevention. 9, 10 Previous research has found that telephone J o u r n a l P r e -p r o o f helplines are beneficial to people dealing with suicidal ideations 11 because users feel safer to ask questions on sensitive issues such as depression, death, and finance compared to a web-based approach. 12 Hotlines continue to be critical sources of information and support during the COVID-19 pandemic as they could be tailored in a culturally appropriate way to connect spiritually with callers. 13 Hotlines have also been praised as an ideal form of psychological service delivery during the pandemic as they do not require face-to-face interaction, 14 and can be tailored to audiences such as frontline workers. 15 Hotlines have not previously addressed specific needs of the dialysis or transplant communities particularly during a pandemic. The KTLRC is the first known hotline created specifically for dialysis and transplant patients to help them navigate the COVID-19 pandemic.

After surveying dialysis and transplant patients who contacted the KTLRC, we conducted a study with three aims, to: (1) determine how healthcare changes and fears about getting COVID-19 resulted in healthcare management, financial, and emotional challenges, (2) identify coping strategies and information-seeking behaviors, and (3) assess opportunities for the healthcare system to help patients better cope with COVID-19 related challenges.

This study employed a mixed-methods strategy including semi-structured interviews and surveys. Semi-structured interviews assessed dialysis and transplant patients' common questions, fears, and stressors during COVID-19, and surveys assessed J o u r n a l P r e -p r o o f dialysis and transplant patients' depression/anxiety levels, coping strategies, and information-seeking behaviors.

This study was approved by the University of California, Los Angeles Institutional Review Board (20-000863) under a waiver of documentation of consent. 

We created and launched the COVID-19 KTLRC in direct response to the unique and unmet needs of the dialysis and organ transplant community during the COVID-19 pandemic. The KTLRC enabled dialysis and transplant patients to share their questions and concerns with trained staff and provided a better understanding of the challenges dialysis and transplant patients faced during COVID-19. Participants were recruited for the study, from 6/17/2020 -11/24/2020, through social media (i.e., Instagram, Facebook) and the transplant center's electronic medical records. These participants were found by searching relevant hashtags such as #transplant #dialysis, etc. and by messaging people suggestions for improvement within the healthcare community. A detailed interview guide with survey questions can be found in Item S1.

Participants also completed a quantitative survey assessing their demographic characteristics (e.g., gender, race/ethnicity), participant type (e.g., dialysis patient, transplant patient), primary language spoken, and education level. They were screened for anxiety and depression using the Patient Health Questionnaire for Depression and Anxiety (the PHQ-4). 16 Participants were asked how often they were bothered by four different problems (e.g., feeling nervous, anxious or on edge, etc.) over 2 weeks. The J o u r n a l P r e -p r o o f categories of psychological distress were none (0-2), mild (3) (4) (5) , moderate (6) (7) (8) , and severe (9) (10) (11) (12) .

Finally, participants selected how they were learning about COVID-19 (e.g., from social media, healthcare institutions, news sources, patient groups, and/or searching the internet). Participants reported how much they agreed or disagreed with statements regarding their accessibility to health information (e.g., I wanted health information that I did not know how to get). Then they chose the types of resources that would be most helpful to them (e.g., educational videos, a website with FAQs, a live webinar, and/or a live chat). They answered questions about their comfort using mobile health technology and telehealth (e.g., Using mHealth or Telehealth services would make me very nervous), answering on a Likert scale ranging from 'strongly agree' to 'strongly disagree.'

Questions about how often participants spent their time finding and understanding health information (e.g., How often do you understand information about your health?) were answered on a Likert scale from 'Never' to 'Always'.

Interviews lasted between 30 to 60 minutes and concluded after all interview and survey questions were asked. No repeat interviews were conducted and no field notes were taken. Participants were not compensated for their time but were given educational resources about COVID-19 tailored for transplant patients and caregivers.

The study data was collected and managed using REDCap tools 17, 18 hosted at the Terasaki Institute for Biomedical Innovation. Interviews were transcribed and analyzed for themes and patterns by trained qualitative staff using Braun and Clarke thematic analysis. 19 Transcripts were not returned to the participants. Trained investigators in J o u r n a l P r e -p r o o f thematic analysis, YA and AM, began the analysis by identifying all instances where participants expressed any area of stress and challenges resulting from being an immunocompromised patient during COVID-19. The set of codes emerged inductively, by reading through the transcripts and allowing the data to determine the themes. YA and AM met weekly to modify codes, clarify interpretations, reconcile differences and revise codes. Coded lines were reviewed for themes and sub-themes ( Fig S1) . Qualitative analysis software Dedoose (v 8.3.35) was used to support analysis. Quantitative data was analyzed using descriptive statistics in Stata to calculate frequencies and means of critical variables. Percentages were calculated by the mean of the variable of interest divided by the total count of responses, this number was then multiplied by 100. Critical variables included the study population's demographics, patient's information seeking behaviors, experience using telehealth, etc. Participants did not provide feedback on findings.

A total of 99 participants participated in the KTLRC; 86 participants completed the entire interview with survey and 13 only completed the interview portion of the study. 39 participants were male while 47 were female. The participants varied in their race/ ethnicity, 23 were White, 24 were Black or African American, 24 were Asian, and 25

were Hispanic. 27 participants were dialysis patients and 72 had received a solid organ donation (68 were kidney transplant recipients, 2 were heart recipients, and 2 were lung transplant recipients). The primary language spoken was English with 92 participants, while 7 participants spoke Spanish. The level of education among the participants varied, 17 had a High School diploma or GED, 18 had completed some college, 33 had received an Associate's or Bachelor's degree, and 24 had completed some postgrad education.

After being screened for anxiety and depression using the PHQ-4, 15 out of 86 participants reported having moderate to severe anxiety and depression. Patients with a moderate to severe PHQ-4 score reported having increased anxiety and panic attacks compared to those participants with a lower PHQ-4 score.

Quantitative analysis also indicated that participants consumed health information at least two times weekly via the internet (56.57%), television (40.57%), or print sources (31.13%). They were more likely to learn about health issues from news media (80.8179.28%) than healthcare institutions (64.652.16%) ( Table 2) . Nearly 6970% talked about health issues with family/friends twice a week. Participants with high school degrees or less were less likely to agree that the amount of information they had to make health choices was helpful (p = 0.002). Generally, participants believed they had the necessary resources (94.625.23%) and knowledge (93.5527%) to access telehealth; however, those with only high school degrees (p = 0.002) or Medicare (p = 0.80001) were less confident. Twenty-nine percent of respondents said they agreed or strongly agreed that they wanted health information but did not know how to get it.

Qualitative analysis determined that coping with the possibility of contracting COVID-19 and taking preventive actions to avoid it increased transplant and dialysis patients' emotional, health, and financial stress, especially for those with higher rates of anxiety and depression. Exemplar quotes are provided to demonstrate key themes (Tables   3-5) .

Emotional and health challenges identified included fear of contracting COVID-19, increased vigilance, increased anxiety and panic attacks, strained relationships, 

Financial challenges identified included difficulty maintaining health insurance, losing employment, and the inability to work. When expressing necessary actions taken to prevent exposure to COVID-19, some reported quitting their job, while others decided to not get a job. A transplant patient mentioned challenges finding work due to increased risk, saying "I had been applying for a sales position, and they require me to be out in the public and make calls, but since everything with my immunosuppression, until there's some sort of vaccine, I can't apply for those positions. So, I'm currently on disability" (Transplant Patient 34). Others reported that COVID-19 affected their ability to complete home repairs or to have childcare support within the home. 

Patient-reported stressors working within the kidney healthcare system and managing their CKD and dialysis/transplant health included delays in appointments and kidney transplants as well as difficulty getting dialysis supplies.

When asked what the healthcare community can do better, patients recommended creating a centralized place to receive COVID-19 updates, providing information for safe social activities, increasing healthcare follow-ups, and allowing greater flexibility to choose how they receive healthcare. A transplant patient mentioned the need for more follow-ups from the healthcare community, saying, "I think reaching out via email and saying we're here for you. If you have unanswered questions, here's our portal...we don't want you to feel alone...just that kind of thing, but (the healthcare community) need to be touching base with (immunocompromised patients) maybe even monthly" (Transplant Patient 9). Other changes in kidney patients' lives were decreases in transplant activity, 28 negative psychosocial impacts such as fear of getting infected while at dialysis, 29 and the use of telemedicine. 30, 31 During COVID-19, events converged that disproportionately impacted the mental health of transplant patients: isolation to avoid contracting COVID-19; 7 scarcity and limited access to their usual healthcare team and fears of contracting COVID-19 7 and an ongoing shortage of licensed mental health providers meant that many kidney patients had difficulties getting professional help to cope. 32 Healthcare providers must develop more accessible ways to stay connected with their patients and support them through major health crises full of high uncertainty and stress. For example, in July 2020, King's College Hospital developed a free online web-based hub for kidney patients to manage their wellbeing during lockdown by providing services such as virtual workout sessions, advice videos on navigating physical isolation, and art therapy. 33 Trying to make sense of COVID and cope with the impact on mental health, many at-risk dialysis and transplant patients shared about how they searched through a J o u r n a l P r e -p r o o f vast amount of information, some credible, some not. They reported that there was limited information available for immunocompromised patients. Transplant patients shared about the difficulty in finding information tailored for immunocompromised patients and about the confusing information they were receiving from the news media.

Our study found that patients sought information from their healthcare institutions, by searching the internet, from their friends and family members, from social media, and most commonly from new sources.

While we are still learning how health education was disseminated during COVID-19, our findings are consistent with research during the Ebola and Influenza outbreaks, when people sought health information from mass media, social media, and print media versus seeking information from hospitals and medical care providers. 34, 35 Health systems should increase their use of digital media and explore additional ways to best reach the community with health information during a crisis. Innovative solutions like the KTLRC hotline can be exceptional resources during crises when systems are trying to adapt to the new normal and disseminate accurate information as it is learned.

This study also confirmed findings from previous studies with kidney patients that found they commonly seek support from their family and faith communities to cope with the burden of CKD/dialysis and waiting for transplant. [36] [37] [38] Faith communities have been shown to provide emotional support necessary to deal with the patient's health condition, social support, and ways to make meaning of their daily life while living with a medical condition, many of which were shown to be helpful while social isolating. 39 This study was exploratory and limited to those sharing challenges on a hotline during the first nine months of the COVID-19 pandemic. COVID-19 stressors continue to J o u r n a l P r e -p r o o f change as the pandemic evolves. A limitation to this study was a selection bias in individuals who self-selected by agreeing to participate in this study and those who called into the hotline. Therefore, as all participants self-selected to participate in this study, their experiences and challenges during COVID-19 might be different from dialysis and transplant patients who did not participate in this study. "Staying out of the public realm so as not to catch the sickness, deciding to go into the doctor or stay home and just call, going and get my shots at a place that I can trust. I recently had a terrible experience at CVS waiting for a shingle shot, and it made me walk out without it because their place where they administer the shots was filthy and obviously hadn't been cared for, sanitized, wiped down or anything… I'm just afraid to go back to that drugstore." Transplant Patient 25

Preventing exposure to COVID-19 led to postponed medical visits.

"So I see my Transplant Center about three times a year, three to four times a year...They wanted to see me and then I was like, No. I'm not coming in. And then I was going to push it off again and they're like, no. You haven't gotten bloodwork since February. You have to get your blood work done. And you have to do a telehealth appointment because that's like the longest I went without seeing them. Or getting bloodwork done." Transplant Patient 15 Preventing exposure to COVID-19 affected accessibility of getting medication.

"...every time my daughter has to go to Rite Aid. She's getting exposed.

And she's about as panicked as I am about exposure. So, you know this it's, it's, it's crazy. I'm thinking maybe I'm going to try and do apparently CVS will actually mail the drugs to you." Transplant Patient 41 Due to lack of resources/support from the healthcare community Difficulty receiving up-todate patient focused health education/information.

"The reason why I called -the number wasn't to participate in the survey, but rather to get some more information about how to communicate to my doctors and my transplant team that I need some help getting reasonable accommodations. My employer, because I'm a high-school teacher, so it's like a very high-risk environment. And I just found out about the survey that way, and it made sense to me that, like, I'm spending, I'm spending all this time trying to get these resources and trying to find out this information. And there are lots of transplant patients out there who are also probably in a similar boat and need, you know, we need to kind of advocate for ourselves" Transplant Patient 1022 Challenges receiving healthcare during COVID-19 Difficulty working within telehealth platforms "I'm kind of forced to do the telehealth because that's the way they would rather do it. But I missed the face-to-face interaction. So, I would hope that someday we can get back to actually sitting face to face with your doctor, because that's a little more, that appeals to me a little more than talking to a computer screen." Transplant Patient 430 Delays in appointments and not being able to see their doctor in a timely fashion.

"But I think overall, I think some of it is the fact that, you know, being a transplant recipient and not being able to get to my doctors in a timely fashion, have been a struggle..." Transplant Patient 2

"And I'm still waiting to hear from the pre-transplant unit whether I've been accepted into the new program or not. And when I call, they just say that, "We're really backed up because of COVID," but nobody's giving me a clear-cut answer. Did you get my referral? Like, am I in the system? Like I have living donors that are willing and asking me questions but I can't give them any answers to the questions they're asking because nobody is telling me whether they got the referral and they just say, "We're really backlogged. Like we'll get to you eventually." Transplant Patient 84 Difficulty receiving dialysis supplies.

"[my dialysis supply company] are not delivering my actual supplies, they're not putting it upstairs in like the room that we originally designated. And it's hard to get like these boxes of fluid upstairs. So, they you know, all today because of COVID... And sometimes I have like, over 20 boxes to get upstairs and it's really hard. You know, to get those-to get these heavy boxes upstairs. So, I just wish I mean. I mean, I know they're trying And again, because I have a partner who I live with, and we are coparents, we can split childcare duty, because I can't send my son who's three to daycare, even after the daycare is reopened, because, you know, he's already, there's already been a COVID positive at his daycare. I mean, he hasn't been since March. But like childcare is really hard" Transplant Patient 1022

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Acknowledgements: We thank Hye Kim, Emily H. Wood, and Rachyl Pines, PhD, for participating in the formation of this study and research assistance. We also thank Jacob M. Kolman, MA, ISMPP CMPP™, senior scientific writer at the Center for Outcomes J o u r n a l P r e -p r o o f

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