PurposeHodgkin Lymphoma (HL) is highly curable with well-established treatment regimens; however, the impact on patient’s health-related quality of life (HRQL) from diagnosis through survivorship is unclear. This systematic review aimed to describe the available literature on HRQL in HL, assess the quality of these studies, identify gaps in the literature and recommend further areas of research.MethodsFollowing PRISMA guidelines, we performed a systematic review to include studies assessing the HRQL in HL patients. Articles identified through database searches were screened and data extracted. Quality was evaluated using a 6-point scale, adapted from published HRQL systematic reviews.ResultsSixty five articles published between 1986 and 2015 met inclusion criteria. These included 53 (82 %) cross-sectional studies; 12 (18 %) longitudinal studies, including three embedded in randomized trials; and three additional longitudinal studies that began assessment at diagnosis. Study sample sizes of HL patients varied considerably with only five (42 %) longitudinal studies including more than 50 patients. Multidimensional HRQL was assessed in 45 studies, single HRQL domains in 22 studies, and symptoms, including fatigue, in 28 studies.ConclusionsThe majority of studies employed a cross-sectional design, enrolling HL survivors at least 10 years after the completion of therapy. Emphasis on HRQL following therapy may inform initial treatment decisions and long-term survivorship goals. We recommend that future research include prospective, longitudinal randomized designs across both treatment and time.

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43 Background: The AYA population is a growing group of cancer survivors, currently exceeding 600,000 in the US, with 70,000 new diagnoses each year. These survivors experience deficits in general health, mental health, and functional status. Unfortunately, many are lost to follow-up after the completion of active therapy. They lack clarity about where to go for care and why such care is needed. To further complicate this, many have not established a primary care provider (PCP). Methods: We present a model of survivorship care tailored to the AYA population. Our clinic has dedicated physical space and is staffed by pediatric- and adult-trained oncologists. Survivors are paired with age-matched peer navigators to guide them through the logistics of follow-up care and assist with age- related transitions in education, housing, and insurance. Additionally, we have established a new model of survivorship care, introduced immediately at the end of active therapy, utilizing a staged curriculum, survivorship care plans, and point-of-care health-related quality of life assessment. Results: Fifty-five unique patients seen in 182 visits provided data for this report. The median age was 26 years (range 18-40). Twenty-nine (53%) of the patients were female. The majority of patients (58%) had been treated for a hematologic malignancy. One third of patients had completed college (31%). Most were employed (71%), but a majority still lived with their parents (64%). The majority of patients had more than one late effect (62%). Twenty-three (43%) reported mental health symptoms, including anxiety, mood swings, or sleep problems. Conclusions: A survivorship clinic with tailored programs for AYAs is feasible and necessary. In our sample, many AYA survivors have late effects and almost half reported psychosocial distress. Clinicians need to monitor this age group closely to ensure that patients are not lost to follow-up as they transition from active treatment to survivorship care and from pediatric to adult-based care. Our clinic provides an integrated medical home for the AYA survivor that continues to care for them when active treatment comes to completion and provides ongoing care coordination with PCPs and subspecialists to co-manage their complex health issues.