Browsing by Author "Kim, Hannah P"

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    A Systematic Review of Patient-Reported Outcomes in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis.
    (Hepatology communications, 2020-10) Kim, Hannah P; Lieber, Sarah R; Rogers, Michael E; Moon, Andrew M; Loiselle, Marci; Walker, Jennifer; Assis, David N; Safer, Ricky; Gomel, Rachel; Evon, Donna M
    Primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC) are associated with decreased health-related quality of life and debilitating symptoms. These experiences can be defined as patient-reported outcome (PRO) concepts and measured using PRO instruments. We identified all PRO concepts and instruments used in the PBC and PSC literature. This systematic review identified PBC and/or PSC studies from January 1, 1990, to May 6, 2019, that measured at least one PRO concept. Study population, design, PRO concept, PRO instrument, and validation data for PRO instruments were investigated. We provided descriptive statistics of PRO concepts and instruments used, stratified by population type. Use of PRO concepts and instruments were assessed over time. The search yielded 318 articles (69% in PBC, 18% in PSC, 13% in both, and 24% in drug trials). Forty-nine unique PRO concepts were identified. The five most common PRO concepts included pruritus (25%), fatigue (19%), broad health-related quality of life (16%), gastrointestinal adverse events (6%), and physical adverse events (6%). Only 60% of PRO concepts were measured with a PRO instrument, most of which were nonvalidated visual analogue or numeric rating scales. Only three of 83 PRO instruments were developed with feedback from the target populations (one for PBC, one for PSC, and one for both), and only six documented any psychometric testing in the target populations. Use of PRO instruments increased over time from 30% in the 1990s to 67% by 2019. Conclusion: The overwhelming majority of PRO instruments used in PBC/PSC were nonspecific and lacked patient validation or empirical justification. Significant opportunities exist to use qualitative methods to better understand patient experiences, and translate this knowledge into meaningful, patient-driven study outcomes.
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    Early Survivorship after Liver Transplantation: A Qualitative Study Identifying Challenges in Recovery From The Patient and Caregiver Perspective.
    (Liver transplantation : official publication of the American Association for the Study of Liver Diseases and the International Liver Transplantation Society, 2021-09-16) Lieber, Sarah R; Kim, Hannah P; Baldelli, Luke; Nash, Rebekah; Teal, Randall; Magee, Gabrielle; Desai, Chirag S; Loiselle, Marci M; Lee, Simon C; Singal, Amit G; Marrero, Jorge A; Barritt, A Sidney; Evon, Donna M

    Background

    Survivorship after liver transplantation (LT) is a novel concept providing a holistic view of the arduous recovery experienced after transplantation. We explored components of early survivorship including physical, emotional, and psychocological challenges to identify intervention targets for improving the recovery process of LT recipients and caregivers.

    Methods

    Twenty in-person interviews were conducted among adults 3-6 months post-LT. Trained qualitative research experts conducted interviews, coded, and analyzed transcripts to identify relevant themes and representative quotes.

    Results

    Early survivorship comprises overcoming: 1) physical challenges-the most-challenging experiences involving mobility, driving, dietary modifications, and medication adherence and 2) emotional and psychological challenges-including new health concerns, financial worries, body image/identity struggles, social isolation, dependency issues, and concerns about never returning to normal. Etiology of liver disease informed survivorship experiences including some patients with hepatocellular carcinoma expressing decisional regret or uncertainty in light of their post-LT experiences. Important topics were identified that framed LT recovery including setting expectations about waitlist experiences, hospital recovery, and ongoing medication requirements.

    Conclusion

    Early survivorship after LT within the first six months involves a wide array of physical, emotional and psychological challenges. Patients and caregivers identified what they wish they had known prior to transplant and strategies for recovery, which can inform targeted LT survivorship interventions.
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    What Survivorship Means to Liver Transplant Recipients-Qualitative Groundwork for A Survivorship Conceptual Model.
    (Liver transplantation : official publication of the American Association for the Study of Liver Diseases and the International Liver Transplantation Society, 2021-05-03) Lieber, Sarah R; Kim, Hannah P; Baldelli, Luke; Nash, Rebekah; Teal, Randall; Magee, Gabrielle; Loiselle, Marci M; Desai, Chirag S; Lee, Simon C; Singal, Amit G; Marrero, Jorge A; Barritt, A Sidney; Evon, Donna M

    Background & aims

    Survivorship is a well-established concept in the cancer care continuum with a focus on disease recurrence, quality of life, and minimizing competing risks for mortality; however, this has not been well studied in liver transplantation (LT). We aimed to investigate what survivorship means to LT patients and identify motivations and coping strategies for overcoming challenges after LT.

    Approach & results

    Twenty in-depth home interviews were conducted among adults 3 to 6 months after LT. Interviews were conducted by trained qualitative research experts, coded and analyzed using an inductive approach. A majority of LT recipients (75%) identified themselves as survivors. Integral to the definition of survivorship was overcoming hardship (including experiences on the waitlist) and the unique experience of being given a "second chance" at life. Motivations to survive included: 1) honoring a new chance at life (55%), 2) family (40%), 3) spirituality/faith (30%), and 4) fear of rejection (15%). LT recipients and caregivers identified multiple strategies to cope with post-LT challenges including relying on a large network of community, spiritual, and virtual support. These findings informed a conceptual model of LT survivorship based on socioecological theory, which identified the following variables influencing survivorship: 1) pre-transplant experiences, 2) individual attributes and challenges, 3) interpersonal relationships with caregivers and other social support, 4) community relationships, and, 5) largescale factors including neighborhood and financial issues.

    Conclusions

    LT recipients identify themselves as survivors, and post-LT identities were greatly influenced by pre-LT experiences. These perspectives informed an in depth conceptual model of survivorship after transplantation. We identified sources of motivation and coping strategies used in LT recovery that could be targets of survivorship interventions aimed at improving post-LT outcomes.