Patient-reported symptom burden and impact on daily activities in chronic graft-versus-host disease

Abstract

Background: Chronic graft-versus-host disease (GVHD) is a potentially life-threatening complication of allogeneic hematopoietic stem cell transplantation (HSCT) treatment for hematologic malignancies. There are limited patient-reported data concerning symptom burden and effects on activities of daily living (ADL).

Methods: The cross-sectional Living With Chronic GVHD Patient Survey was administered online in the United States (May-August 2020) to participants aged ≥18 years who underwent allogeneic HSCT, were diagnosed with chronic GVHD by a healthcare provider, and self-reported active chronic GVHD (within past 5 years). Information on patient demographics, disease characteristics, symptom burden, and ability to perform ADL was collected. Symptom burden was assessed using the validated Lee Symptom Scale (range from 0-100 with higher scores indicating greater burden). All data were summarized using descriptive statistics; no formal statistical comparisons were conducted.

Results: Out of 580 participants who entered the survey screener, 165 participants (28.4%) across 33 states fulfilled all study eligibility criteria, completed the entire survey, and were included (age: mean [SD], 53.7 (13.8) years; median [range], 57.0 [18-78] years; female, n = 105 [63.6%]; White, n = 137 [83.0%]). Respondents described their chronic GVHD severity primarily as moderate (n = 54 [32.7%]) or severe (n = 102 [61.8%]) at the time when symptoms were at their worst. One-third of respondents (33.9%) indicated that their chronic GVHD symptoms were at their worst for ≥1 year in duration. Mean (SD; range) Lee Symptom Scale score was 44.8 (19.4; 2-100); 44% of respondents considered "dry eye" the most burdensome symptom. Almost half of respondents (n = 73 [44.2%]) rated their overall quality of life (QoL) as poor. Participants reported a detrimental impact of symptoms on ADL, including basic activities (eg, eating, personal hygiene, dressing).

Conclusions: Survey respondents self-reported high chronic GVHD symptom burden and felt that their symptoms severely interfered with physical function and ADL. Effective strategies to mitigate chronic GVHD symptoms are needed to improve QoL among HSCT survivors.

Keywords: QoL; hematological cancer; myeloproliferative disorders; quality of life.

FIGURE 1

Respondent disposition. ^†Percentages are out of the number of participants with a nonmissing response. ^‡Percentages for exclusions (“decline” or “no”) are out of the number of participants with a nonmissing response.

FIGURE 2

Total LSS summary score and subdomain scores when chronic GVHD symptoms were at their worst. GVHD, graft‐versus‐host disease; LSS, Lee Symptom Scale. ^†Total score computed as the average of the 7 original subscale scores (excludes genital and urinary domain), as long as 4 or more subscales are available. ^‡Captured using a separate subscale.

FIGURE 3

Respondent‐selected top 3 most bothersome chronic GVHD symptoms^† (A) overall and (B) by severity and length of their worst symptoms. Symptoms reported in ≥10% of patients overall are shown. GVHD, graft‐versus‐host disease; LSS, Lee Symptom Scale. ^†Symptom categories were not mutually exclusive.

FIGURE 4

Types of specialists seen by survey respondents for their chronic GVHD. GVHD, graft‐versus‐host disease; OT, occupational therapist; PCP, primary care physician; PT, physical therapist.

FIGURE 5

Respondent‐reported overall QoL, physical health, and mental health when chronic GVHD symptoms were at their worst. GVHD, graft‐versus‐host disease; QoL, quality of life.

FIGURE 6

Impact of chronic GVHD on ADL^† when symptoms were at their worst (A) overall and (B) by symptom severity and duration. ADL, activities of daily living; GVHD, graft‐versus‐host disease. ^†Coded score range: 1 (“no effect on my daily activities”) to 11 (“completely prevented me from doing my daily activities”). A higher score indicates greater impact on activities. Basic ADLs are skills required to manage basic physical needs; instrumental ADLs require more complex organizational and cognitive abilities. Activities with mean scores ≥4.0 are shown.