Publications by authors named "Christopher J Recklitis"

70 Publications

Validation of the Insomnia Severity Index (ISI) for identifying insomnia in young adult cancer survivors: comparison with a structured clinical diagnostic interview of the DSM-5 (SCID-5).

Sleep Med 2021 Feb 4;81:80-85. Epub 2021 Feb 4.

Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, USA; Harvard Medical School, 25 Shattuck Street, Boston, MA, USA. Electronic address:

Objectives: Insomnia is a common problem affecting young adult cancer survivors (YACS) even years after treatment, yet it often goes unidentified and untreated. The Insomnia Severity Index is a widely-used insomnia measure, but has not been studied as an insomnia screener for YACS. The goal of this study was to validate the ISI in YACS by determining its utility in identifying YACS with insomnia disorder diagnosed with the Structured Clinical Interview for the DSM-5 (SCID-5).

Methods: 250 YACS completed the ISI and SCID-5 Insomnia Module. Area under the curve (AUC) was calculated to reflect the ISI's discrimination between YACS with and without SCID-5 insomnia disorder. An ISI cut-off score with sensitivity ≥0.85 and specificity ≥0.75 was deemed acceptable.

Results: Of 250 participants, 52 met criteria for SCID-5 insomnia disorder diagnosis. The ISI had excellent discrimination, with an AUC = 0.91. A cut-off score ≥8 met study clinical screening criteria with sensitivity of 0.85 and specificity of 0.77. A cut-off score ≥7 with a higher sensitivity (0.96) but lower specificity (0.70) was noted as a potential alternative. Cut-off scores ≥12 and ≥ 14 were recommended for applications prioritizing overall accuracy.

Conclusions: Results support validity of the ISI for identifying YACS with insomnia disorder. For clinical screening, data support the use of an ISI cut-off score ≥8 in YACS, and additional cut-off scores were found for research purposes or higher sensitivity. Results of this study and prior studies of the ISI offer important reminders that cut-off scores derived from different populations are not generalizable.
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http://dx.doi.org/10.1016/j.sleep.2021.01.045DOI Listing
February 2021

Virtual visits as long-term follow-up care for childhood cancer survivors: Patient and provider satisfaction during the COVID-19 pandemic.

Pediatr Blood Cancer 2021 Feb 8:e28927. Epub 2021 Feb 8.

David B. Perini Jr., Quality of Life Clinic, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Telemedicine can potentially meet objectives of long-term follow-up care (LTFU) for childhood cancer survivors (CCS) while reducing barriers. We surveyed providers at our institution about their satisfaction with video-conference virtual visits (VV) with 81 CCS during COVID-19 restrictions. The same 81 CCS (or parent proxies) were surveyed about their experience, of which 47% responded. Providers and CCS were highly satisfied with VV (86% and 95% "completely/very satisfied," respectively). CCS rated VV "as/nearly as" helpful as in-person visits (66%) and 82% prefer VV remain an option postpandemic. High levels of survivor and provider satisfaction with VV support ongoing investigation into implementation for LTFU.
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http://dx.doi.org/10.1002/pbc.28927DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7995169PMC
February 2021

Long-Term Psychosocial Well-Being and Quality of Life Among Childhood Cancer Survivors Who Developed a Subsequent Malignant Neoplasm.

J Adolesc Young Adult Oncol 2020 Aug 14. Epub 2020 Aug 14.

Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Childhood cancer survivors (CCS) are at increased risk of subsequent malignant neoplasms (SMNs). However, the impact of SMNs on long-term psychosocial functioning is unknown. In a cohort of 322 young adult CCS, survivors who developed a SMN ( = 43, 13.4%) did not report a significantly higher burden of fatigue, insomnia, depression, anxiety, or impaired quality of life on average 8 years after SMN diagnosis. They, however, endorsed significantly greater body image concerns. Our findings indicate that CCS with an SMN do not significantly differ from those without regarding most psychosocial outcomes in young adulthood, although clinicians may be vigilant for greater body image dissatisfaction.
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http://dx.doi.org/10.1089/jayao.2020.0046DOI Listing
August 2020

Sleep in young-adult cancer survivors during the COVID-19 pandemic.

J Clin Sleep Med 2020 11;16(11):1991

Perini Family Survivors' Center, Dana-Farber Cancer Institute, Boston, Massachusetts.

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http://dx.doi.org/10.5664/jcsm.8716DOI Listing
November 2020

Evaluating the Brief Parental Intake Form (BPIF) for psychosocial difficulties in childhood cancer survivors.

Psychooncology 2020 10 17;29(10):1510-1512. Epub 2020 Aug 17.

Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

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http://dx.doi.org/10.1002/pon.5482DOI Listing
October 2020

Internet-delivered insomnia intervention improves sleep and quality of life for adolescent and young adult cancer survivors.

Pediatr Blood Cancer 2020 09 22;67(9):e28506. Epub 2020 Jun 22.

Perini Family Survivors' Center, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Background: Insomnia is common among adolescent and young adult (AYA) cancer survivors. Cognitive-behavioral therapy for insomnia (CBT-I) is considered the gold standard treatment. Standard CBT-I was designed for adults and not adapted to the unique medical, psychosocial, and developmental needs of AYA cancer survivors, which can exacerbate their insomnia. Further, the vast majority of cancer centers do not have a behavioral sleep medicine expert on staff. Our study objective was to examine the efficacy of an Internet-delivered CBT-I program that was tailored for AYA cancer survivors (NCT03279055).

Procedure: Twenty-two AYA cancer survivors (mean age 20.4; range 14-25) with insomnia enrolled in an automated CBT-I program modified for AYA cancer survivors following stakeholder feedback. Participants were blood cancer (54.5%) and solid tumor (45.5%) survivors, an average of 9.7 years postdiagnosis. Sleep health, fatigue, and quality of life were assessed at baseline and at two follow up timepoints (8 and 16 weeks postbaseline).

Results: Significant improvements in insomnia severity, daytime sleepiness, fatigue, and quality of life were reported at both follow up timepoints. However, most participants (72.7%) did not complete all of the six study sessions, with a mean completion rate of 3.2 sessions. Participants who completed at least two sessions reported better sleep (insomnia severity index total score) than those who did not.

Conclusions: An Internet-delivered insomnia intervention adapted for AYA cancer survivors was efficacious. This has important implications for access to evidence-based clinical care for this growing population. Future efforts should study stepped care models of care and ways to improve treatment adherence.
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http://dx.doi.org/10.1002/pbc.28506DOI Listing
September 2020

Patterns of self-reported care in a cohort of prostate cancer survivors: Implications for risk-stratified care.

J Geriatr Oncol 2020 09 17;11(7):1164-1167. Epub 2020 Mar 17.

Perini Family Survivors' Center, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA, United States of America.

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http://dx.doi.org/10.1016/j.jgo.2020.03.006DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7905845PMC
September 2020

Pediatric hematology and oncology fellow education in sexual and reproductive health: A survey of fellowship program directors in the United States.

Pediatr Blood Cancer 2020 05 8;67(5):e28245. Epub 2020 Mar 8.

Perini Family Survivors Center, Dana-Farber Cancer Institute, Boston, Massachusetts.

Purpose: Pediatric oncology clinicians identify a need for increased sexual and reproductive health (SRH) education with adolescent and young adult (AYA) cancer patients. By surveying pediatric oncology fellowship directors, this study clarifies the state of current fellowship education about SRH for the AYA patient.

Methods: A survey was sent to all pediatric oncology fellowship program directors (PDs) in the United States consisting of 13 questions pertaining to three primary SRH domains: sexual health, fertility, and safe sex practices. Descriptive statistics and χ were used in data analyses.

Results: Sixty-three PDs responded to the survey (91% response rate). Of these, 88% reported having formal instruction regarding fertility, 41% reported curriculum regarding contraception and 30% reported some education regarding sexual health. The curriculum "being too full" was identified as a barrier to education on fertility (29%), sexual health (40%), and safe sex practices (38%). Not being a required or expected part of the program was more likely to be endorsed as a barrier for sexual health (26%) and safe sex practices (30%) compared with fertility (8%) (P < 0.005). Lack of experts to teach was a more frequently endorsed barrier to education on sexual health (47%) compared with either fertility (23%) or safe sex practices (25%) (P < 0.005).

Conclusions: This study identifies important gaps in oncology fellow education about SRH. Future research must explore optimal education strategies that are feasible and acceptable by PDs and fellow learners, and effective in optimizing AYA SRH care.
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http://dx.doi.org/10.1002/pbc.28245DOI Listing
May 2020

Screening young adult cancer survivors with the PROMIS Depression Short Form (PROMIS-D-SF): Comparison with a structured clinical diagnostic interview.

Cancer 2020 04 8;126(7):1568-1575. Epub 2020 Jan 8.

Department of Psychiatry, VA Boston Healthcare System, Brockton, Massachusetts.

Background: The current study was conducted to evaluate the Patient-Reported Outcomes Measurement Information System Depression Short Form (PROMIS-D-SF) as a screening measure for young adult cancer survivors (YACS) compared with a structured diagnostic interview.

Methods: A total of 249 YACS (aged 18-40 years) completed the PROMIS-D-SF and Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (SCID). Based on the SCID, participants were classified as having: 1) an SCID depression diagnosis; 2) depression symptoms without an SCID diagnosis; or 3) no depression symptoms. Receiver operating characteristic analyses evaluated PROMIS-D-SF and SCID concordance and the sensitivity and specificity of PROMIS-D-SF cutoff t -scores.

Results: The PROMIS-D-SF had overall good agreement with the SCID for both depression diagnosis (area under the curve, 0.89) and the presence of depressive symptoms (area under the curve, 0.83). A PROMIS-D-SF cutoff t-score of ≥53.2 came closest to meeting study criteria for detecting a SCID depression diagnosis (sensitivity ≥0.85 and specificity ≥0.75), with a sensitivity of 0.81 and a specificity of 0.74. For identifying survivors with depression symptoms, a t-score cutoff value of 49.4 was found to have slightly superior sensitivity (0.84) and inferior specificity (0.64). In hypothetical screening examples, these cutoff scores led to moderate levels of missed cases (15%-19%) and a high percentage of clinical referrals that were unnecessary by SCID criteria (56%-70%).

Conclusions: The PROMIS-D-SF demonstrated moderately strong concordance with depressive diagnoses and symptoms measured by the SCID, but cutoff t-scores did not meet study criteria for clinical screening. The PROMIS-D-SF may be useful for assessing depression in YACS, but the limitations in its sensitivity and specificity identified in the current study are likely to limit its usefulness as a stand-alone screening instrument in this population.
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http://dx.doi.org/10.1002/cncr.32689DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7360134PMC
April 2020

Developing efficient and effective behavioral treatment for insomnia in cancer survivors: Results of a stepped care trial.

Cancer 2020 01 24;126(1):165-173. Epub 2019 Sep 24.

Perini Family Survivors' Center, Dana-Farber Cancer Institute, Boston, Massachusetts.

Background: Insomnia is common among cancer survivors. Although behavioral treatments for insomnia are effective, access is limited. Stepped care delivery models may provide insomnia treatment that is more efficient and accessible to cancer survivors.

Methods: Fifty-one survivors (mean age, 55 years) with elevated Insomnia Severity Index (ISI) scores (≥12) first participated in Sleep Training Education Program (STEP)-1: a single, sleep education session. Those reporting elevated ISI scores 1 month later were offered STEP-2: a 3-session, group cognitive behavioral treatment for insomnia that has been demonstrated to be efficacious. Participants were considered treatment responders if their ISI score improved by ≥6 points and were considered as having remitted if their posttreatment ISI score was <12. Mood was assessed with the Profile of Mood States-Short Form (POMS-SF).

Results: Following STEP-1, ISI scores improved (17.1 to 11.2; P < .001), with 45% responding and 41% remitted. Insomnia remission after STEP-1 was associated with lower insomnia severity and shorter duration of sleep problems at baseline. Of the 30 (59%) survivors with unremitted insomnia after STEP-1, 14 (47%) participated in STEP-2. Following STEP-2, ISI scores improved (16.9 to 8.8; P < .001), with 79% responding and 71% remitted. STEP-2 participation was associated with interest in sleep treatment at baseline, but not demographic/health-related variables. Mood improved significantly following both STEP-1 and STEP-2 (P < .001).

Conclusion: A stepped care approach to treating insomnia among cancer survivors has the potential to improve treatment accessibility. A sizable proportion of survivors can benefit from 2 different low-intensity approaches that could be delivered by nonsleep specialists. For individuals who require more intensive care, assessing treatment interest can identify those who are likely to engage.
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http://dx.doi.org/10.1002/cncr.32509DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6906236PMC
January 2020

Prevalence and Correlates of Pain in Adolescent and Young Adult Survivors of Pediatric Brain Tumors.

J Adolesc Young Adult Oncol 2019 12 19;8(6):641-648. Epub 2019 Jul 19.

Department of Pediatrics, Harvard Medical School, Boston, Massachusetts.

Survivors of pediatric brain tumors (PBTs) are at high risk for medical late effects, including pain. Although pain is common at PBT diagnosis and during treatment, less is known about survivors' pain after completing therapy. This study examined the prevalence and correlates of pain in long-term PBT survivors enrolled on Project REACH (Research Evaluating After Cancer Health), a cohort study of locally treated cancer survivors. Participants were 116 PBT survivors (ages 13-32; 51% male; mean 10.6 years from diagnosis) who completed self-report measures of pain and quality of life (QOL). Survivors reporting "moderate pain" ≥2 days/week or "severe pain" ≥1 day/week were classified as pain cases. Correlates of pain were examined using logistic regression. In total 42 participants (36.2%) met pain case criteria with headache and muscular/skeletal pain most common sources of their worst pain (16 and 11 survivors, respectively). In adjusted analysis, pain cases were more likely to be female (odds ratio [OR] = 1.96,  = 0.034), and less likely to be in the older age group (18-22 years) than younger (13-17 years) age group (OR = 0.232,  = 0.006). No other demographic, disease, or treatment variables were associated with pain case status. Survivors categorized as pain cases reported inferior QOL across all domains of the PedsQL. A subset of PBT survivors experience significant pain that negatively impacts QOL years after completing therapy. Clinics caring for PBT survivors must incorporate appropriate pain assessment and treatment into standard care. Research is needed to better understand both risk factors and effective treatment strategies for pain in this vulnerable population.
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http://dx.doi.org/10.1089/jayao.2019.0029DOI Listing
December 2019

How does a single session group intervention improve sexual function in ovarian cancer survivors? A secondary analysis of effects of self-efficacy, knowledge and emotional distress.

Psychol Health Med 2020 01 5;25(1):110-120. Epub 2019 Jun 5.

Department of Psychosocial Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.

Although sexual dysfunction after ovarian cancer (OC) treatment is a common side effect, intervention for this issue remains largely unaddressed in the literature. To address this gap, we recently developed and tested a theory-driven psychosexual intervention that successfully improved sexual function in OC survivors. This study is a secondary analysis to determine whether the intervention effects were consistent with our theoretical model. We expected that improved self-efficacy, sexual knowledge and emotional distress would relate to improved sexual function, and that effects of sexual knowledge and self-efficacy on sexual function would be mediated by emotional distress. 46 OC survivors completed study measures prior to and two-months following the intervention. Results indicated that self-efficacy, sexual knowledge, and emotional distress improved significantly post-intervention. While self-efficacy and emotional distress were both directly associated with sexual function; contrary to expectation, change in knowledge was not. Results also demonstrated that the relationship between self-efficacy and sexual function was not mediated by emotional distress. Clinical implications underscore the importance of promoting self-efficacy and decreasing emotional distress in the context of sexual rehabilitation treatment for OC survivors. Next steps include refining the intervention based on these findings and testing in a larger, randomized trial of gynecological cancer survivors.
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http://dx.doi.org/10.1080/13548506.2019.1626452DOI Listing
January 2020

Finding sexual health aids after cancer: are cancer centers supporting survivors' needs?

J Cancer Surviv 2019 04 27;13(2):224-230. Epub 2019 Feb 27.

Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, USA.

Purpose: Sexual dysfunction is one of the most prevalent and distressing treatment-related side effects for both male and female cancer survivors. Survivorship care guidelines recommend therapeutic sexual aids to help improve sexual problems. However, little is known about the availability of sexual aids and resources at cancer centers.

Methods: Twenty-five comprehensive cancer centers affiliated with both the National Cancer Institute and the National Comprehensive Care Network were surveyed using the "mystery shopper" method to determine whether various types of sexual aids were available at the centers. Staffs from cancer center staff retail stores and patient boutiques were queried in separate telephone calls regarding the availability of these aids for and women.

Results: Of the 25 centers contacted, 23 (92%) responded about aids for men, and 22 (88%) responded about aids for women. Eighty-seven percent of the centers reported having no sexual aids available for men, and 72% of centers reported having no aids available for women. The most common advice given to mystery shoppers was a suggestion to use the internet. Only one center had numerous aids/resources for both men and women.

Conclusions: The large majority of cancer centers reported having no sexual aids or other sexual health resources available for men or women.

Implications For Cancer Survivors: Results underscore the widespread lack of resources to promote sexual health rehabilitation at major cancer centers, both for male and female survivors.
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http://dx.doi.org/10.1007/s11764-019-00744-2DOI Listing
April 2019

Psychometric properties of the Insomnia Severity Index in cancer survivors.

Psychooncology 2019 03 15;28(3):540-546. Epub 2019 Jan 15.

Perini Family Survivors' Center, Dana-Farber Cancer Institute, Boston, MA, USA.

Objective: Insomnia is commonly associated with cancer treatment. Cancer treatments increase risk for numerous psychological and medical late effects, thus making cancer survivors psychologically and medically vulnerable. Prior research examined psychometric properties of the Insomnia Severity Index (ISI) with various populations, including the French version of the ISI, with participants undergoing active cancer treatment. However, no prior studies examined insomnia exclusively with cancer survivors, using the English version of the ISI.

Methods: This study examined internal consistency and factor structure of an English version of the ISI in 100 cancer survivors (M  = 51.1; SD = 14.92). This final analytic sample was composed of participants from three different insomnia interventions. Survivors ranged from less than 1 year off treatment (17%) to 21+ years off treatment (6%), with most participants off treatment for 1 to 2 years (24%).

Results: The mean ISI score for the total sample was 16.69 (SD = 4.47), indicating clinical insomnia, with moderate severity. Principal Components Analysis (PCA) indicated two factors (five items loading on Factor I and two items loading on Factor II) and acceptable reliability (α = .73). Item-total correlations ranged from .15 to .63.

Conclusions: Findings support the reliability of the ISI in cancer survivors. However, its factor structure warrants additional research with larger samples of cancer survivors. Results suggest inconsistency across participant responses and that ISI items may be functioning differently with this unique population of cancer survivors. Findings indicate that sleep maintenance problems are central to the experience of insomnia in our survivor sample.
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http://dx.doi.org/10.1002/pon.4973DOI Listing
March 2019

Utilization of integrated psychosocial care in a pediatric cancer survivorship clinic: A retrospective medical record review.

Psychooncology 2019 02 30;28(2):439-441. Epub 2018 Oct 30.

Dana-Farber Cancer Institute and Harvard Medical School, Boston, Massachusetts, USA.

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http://dx.doi.org/10.1002/pon.4922DOI Listing
February 2019

Open-label placebo reduces fatigue in cancer survivors: a randomized trial.

Support Care Cancer 2019 Jun 10;27(6):2179-2187. Epub 2018 Oct 10.

Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USA.

Purpose: Cancer-related fatigue (CRF) is a common and challenging late effect for many cancer survivors. Clinical trials demonstrate robust placebo effects on CRF in blinded trials. Recently, open-label placebo (OLP) has been shown to improve a variety of symptoms in other populations. We conducted a randomized controlled trial to investigate the effect of OLP on CRF in cancer survivors, and to explore biologic and psychological correlates of placebo efficacy.

Methods: Forty cancer survivors (92.5% female; mean age 47.3 years) were randomized to OLP or no treatment control. OLP participants were prescribed two placebo tablets twice daily, for 3 weeks. All participants completed assessments at Baseline, Day 8, and Day 22. The primary endpoint was change in CRF (FACIT-F), and secondary outcomes included exercise frequency, mood, and quality of life. We examined whether personality characteristics or a genetic variation important in dopamine catabolism (catechol-O-methyltransferase; COMT) affected the placebo response.

Results: The OLP group reported significantly improved CRF at both Day 8 (p = 0.005) and Day 22 (p = .02), while the control group did not (ps > .05). CRF improvement differed by COMT genotype, but was not associated with personality characteristics. Marginal improvements were noted in the placebo group for some secondary outcomes (exercise frequency and quality of life), but not in the control group.

Conclusions: Results demonstrate that even when administered openly, placebos improve CRF in cancer survivors and dopaminergic systems may be associated with this response. This novel research has meaningful implications for the use of OLP in symptom management for cancer survivors.
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http://dx.doi.org/10.1007/s00520-018-4477-6DOI Listing
June 2019

Preferences for Help With a Sleep Problem Before Starting Cancer Treatment.

J Pain Symptom Manage 2019 01 4;57(1):e5-e8. Epub 2018 Oct 4.

City of Hope National Medical Center, Duarte, California, USA.

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http://dx.doi.org/10.1016/j.jpainsymman.2018.09.022DOI Listing
January 2019

Psychological Symptoms, Social Outcomes, Socioeconomic Attainment, and Health Behaviors Among Survivors of Childhood Cancer: Current State of the Literature.

J Clin Oncol 2018 07 6;36(21):2190-2197. Epub 2018 Jun 6.

Tara M. Brinkman and James L. Klosky, St Jude Children's Research Hospital, Memphis, TN; Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Gisela Michel, University of Lucerne, Lucerne, Switzerland; and Martha A. Grootenhuis, Princess Maxima Center for Pediatric Oncology, Utrecht, the Netherlands.

The diagnosis, treatment, and medical late effects of childhood cancer may alter the psychosocial trajectory of survivors across their life course. This review of the literature focuses on mental health symptoms, achievement of social milestones, socioeconomic attainment, and risky health behaviors in survivors of childhood cancer. Results suggest that although most survivors are psychologically well adjusted, survivors are at risk for anxiety and depression compared with siblings. Although the absolute risk of suicide ideation and post-traumatic stress symptoms is low, adult survivors are at increased risk compared with controls. Moreover, young adult survivors are at risk for delayed psychosexual development, lower rates of marriage or cohabitation, and nonindependent living. Survivors' socioeconomic attainment also is reduced, with fewer survivors graduating college and gaining full-time employment. Despite risk for late health-related complications, survivors of childhood cancer generally engage in risky health behaviors at rates similar to or only slightly lower than siblings and peers. CNS tumors and CNS-directed therapies are salient risk factors for poor psychosocial outcomes. In addition, physical health morbidities resulting from cancer-directed therapies are associated with worse psychosocial functioning. Several studies support the effectiveness of cognitive and behavioral interventions to treat psychological symptoms as well as to modify health behaviors. Additional randomized controlled trials are needed to evaluate the efficacy and long-term outcomes of intervention efforts. Future research should focus on the identification of potential genetic predispositions related to psychosocial outcomes to provide opportunities for preventive interventions among survivors of childhood cancer.
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http://dx.doi.org/10.1200/JCO.2017.76.5552DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6053297PMC
July 2018

Sleepless from the Get Go: Sleep Problems Prior to Initiating Cancer Treatment.

Int J Behav Med 2018 Oct;25(5):502-516

Supportive Care Medicine, City of Hope National Medical Center, Duarte, CA, USA.

Purpose: Cancer patients are likely to experience sleep problems. Understanding their perception of sleep problems is important as subjective symptom experience is associated with treatment-seeking behavior. We explored the prevalence of sleep problems and its correlates in a large sample of cancer patients at an important but understudied stage of their cancer journey: prior to initiating treatment.

Methods: Cancer patients (5702) (67.5% female; 76.9% White; 23.0% Hispanic), following diagnosis and prior to initiating cancer treatment, completed an electronic screening instrument. Patients across eight different cancer diagnoses (breast, gastrointestinal, gynecological, head and neck, hematological, lung, prostate, urinary) rated their sleep problems on a five-point scale, with those reporting "severe" or "very severe" sleep problems classified as having high sleep problems.

Results: Overall, 12.5% of patients reported high sleep problems. Across diagnoses, the proportion of patients reporting high sleep problems ranged from 4.3 to 13.8%, with prostate cancer patients least likely and gastrointestinal cancer patients most likely to report high sleep problems. Older age, having a partner, higher education, and higher household income were associated with a lower likelihood of experiencing sleep problems. Being female, Black, Hispanic, and reporting anxiety or depression was associated with an increased likelihood of sleep problems.

Conclusions: A sizeable proportion of cancer patients experience significant problems with their sleep before any treatment has occurred. This clinical issue cannot be ignored as treatment is likely to worsen existing sleep problems. Oncology providers should routinely screen for sleep-related problems. Identifying and treating patients for sleep problems during a vulnerable period early in their cancer trajectory should be an essential component of clinical care.
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http://dx.doi.org/10.1007/s12529-018-9715-2DOI Listing
October 2018

Improvement in sexual function after ovarian cancer: Effects of sexual therapy and rehabilitation after treatment for ovarian cancer.

Cancer 2018 Jan 7;124(1):176-182. Epub 2017 Sep 7.

Dana-Farber Cancer Institute, Boston, Massachusetts.

Background: Sexual dysfunction is a distressing long-term effect after gynecological cancer and affects the majority of survivors for years after the completion of therapy. Despite its prevalence, treatment-related sexual dysfunction is underrecognized and undertreated for survivors. Thus, the aim of this study was to develop and test a brief psychoeducational intervention for managing sexual dysfunction for women who have undergone treatment for ovarian cancer (OC).

Methods: Forty-six OC survivors with documented, treatment-related sexual dysfunction received a single half-day group intervention that included sexual health education and rehabilitation training, relaxation and cognitive behavioral therapy skills to address sexual symptoms, and a single tailored booster telephone call 4 weeks after the group. Assessment measures were completed at the baseline (baseline 1), after an 8-week no-treatment run-in period (baseline 2), and then again 2 and 6 months after the intervention. The Female Sexual Function Index (FSFI) was used to assess sexual functioning, and the Brief Symptom Inventory 18 (BSI-18) was used to capture psychological distress.

Results: Between baseline 1 and baseline 2, there were no significant changes in the study measures, and this indicated no natural improvement during the run-in period. In contrast, the total FSFI scores improved significantly from baseline 1 to the 2- (n = 45; P < .0005) and 6-month time points (n = 42; P < .05). The BSI-18 scores were also significantly improved at the 2- (P < .005) and 6-month time points (P < .01) in comparison with baseline 1.

Conclusions: This brief behavioral intervention led to significant improvements in overall sexual functioning and psychological distress that were maintained at the 6-month follow-up. The results demonstrate the feasibility of this brief, low-intensity behavioral intervention and support the development of a larger randomized controlled trial. Cancer 2018;124:176-82. © 2017 American Cancer Society.
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http://dx.doi.org/10.1002/cncr.30976DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5734953PMC
January 2018

Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation.

Cancer 2017 Aug 7;123(16):3159-3166. Epub 2017 Apr 7.

Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts.

Background: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences.

Methods: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores.

Results: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time-rater interactions, which varied by domain. For example, parent-rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P < .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation.

Conclusions: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience. Cancer 2017;123:3159-66. © 2017 American Cancer Society.
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http://dx.doi.org/10.1002/cncr.30723DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5544550PMC
August 2017

Using Appearance-Based Messages to Increase Sun Protection in Adolescent Young Adult Cancer Survivors: A Pilot Study of Ultraviolet Light Photography.

J Adolesc Young Adult Oncol 2017 Sep 5;6(3):477-481. Epub 2017 Apr 5.

5 University of California , San Diego, San Diego, California.

Despite risk for secondary skin cancers, many adolescent and young adult (AYA) cancer survivors do not practice recommended sun protection (SP). Ultraviolet light photography (UVP), which demonstrates the negative impact of sun exposure on physical appearance, has been shown to increase SP in community AYA samples. This study of 58 AYA cancer survivors demonstrates that UVP is acceptable and not distressing to this population. Follow-up data on 23 AYAs demonstrated that those given UVP significantly improve their SP behaviors, while those receiving standard educational materials do not. Results demonstrate UVP is a promising tool for increasing SP in AYA survivors.
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http://dx.doi.org/10.1089/jayao.2016.0092DOI Listing
September 2017

Validity of the Brief Symptom Inventory-18 (BSI-18) for identifying depression and anxiety in young adult cancer survivors: Comparison with a Structured Clinical Diagnostic Interview.

Psychol Assess 2017 Oct 12;29(10):1189-1200. Epub 2017 Jan 12.

Department of Psychiatry, VA Boston Healthcare System.

The Brief Symptom Inventory-18 (BSI-18) is widely used to assess psychological symptoms in cancer survivors, but the validity of conventional BSI-18 cut-off scores in this population has been questioned. This study assessed the accuracy of the BSI-18 for identifying significant anxiety and depression in young adult cancer survivors (YACS), by comparing it with a "gold standard" diagnostic interview measure. Two hundred fifty YACS, age 18-40 completed the BSI-18 and the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; SCID) interview assessing anxiety and depressive disorders. BSI-18 results were compared with SCID criteria using receiver operating characteristics (ROC) analyses. Forty four participants (17.7%) met criteria for ≥1 SCID diagnoses, and an additional 20 (8.0%) met criteria for clinically significant SCID symptoms without a diagnosis. General concordance between the BSI-18 GSI scale and SCID diagnosis was good (AUC = 0.848), but the 2 most widely used BSI-18 case rules failed to identify a majority of survivors with SCID diagnoses, and no alternative BSI-18 cut-off scores met study criteria for clinical screening. Analyses aimed at identifying survivors with significant SCID symptoms or a SCID diagnosis had similar results, as did analyses examining depression and anxiety separately. The BSI-18 shows good overall concordance with a psychiatric interview, but recommended cut-off scores fail to identify a majority of YACS with psychiatric diagnosis. Clinicians should not rely on the BSI-18 alone as a screening measure for YACS. Alternative BSI-18 scoring algorithms optimized for detecting psychiatric symptoms in YACS may be an important step to address this limitation. (PsycINFO Database Record
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http://dx.doi.org/10.1037/pas0000427DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5507754PMC
October 2017

Provision of integrated psychosocial services for cancer survivors post-treatment.

Lancet Oncol 2017 01;18(1):e39-e50

Biobehavioral Sciences Department, Fred Hutchinson Cancer Research Center and University of Washington School of Medicine, Seattle, WA, USA.

Meeting the psychosocial needs of patients with cancer has been recognised as a priority within oncology care for several decades. Many approaches that address these needs have been developed and described; however, until recently much of this work had focused on patients during treatment and end-of-life care. With continued improvement in therapies, the population of cancer survivors who can expect to live for 5 or more years after cancer diagnosis has increased dramatically, as have associated concerns about how to meet their medical, psychosocial, and health behaviour needs after treatment. Guidelines and models for general survivorship care routinely address psychosocial needs, and similar guidelines for psychosocial care of patients with cancer are being extended to address the needs of survivors. In this Series paper, we summarise the existing recommendations for the provision of routine psychosocial care to survivors, as well as the challenges present in providing this care. We make specific recommendations for the integration of psychosocial services into survivorship care.
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http://dx.doi.org/10.1016/S1470-2045(16)30659-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5865587PMC
January 2017

Validation of Three Previously Developed Short Forms of the Beck Depression Inventory for Youth: A Replication.

J Adolesc Young Adult Oncol 2017 Mar 9;6(1):190-192. Epub 2016 Nov 9.

1 Dana-Farber Cancer Institute , Boston, Massachusetts.

Three previously developed short forms of the Beck Depression Inventory-Youth (BDI-Y) were validated against the standard 20-item BDI-Y; 168 adolescent survivors completed the standard and short-form versions of the BDI-Y. The short forms were evaluated for internal consistency and compared with the standard BDI-Y using correlation coefficients and receiver operating characteristic curve analyses. The three short forms had good internal consistency (α > 0.85), high correlations with the total BDI-Y scale (r > 0.85), and good discrimination compared with the standard BDI-Y cutoff score (area under the ROC curve >0.95). Consistent with prior findings, strong psychometric properties of an eight-item short form support its use as a screening measure for adolescent cancer survivors.
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http://dx.doi.org/10.1089/jayao.2016.0052DOI Listing
March 2017

Evaluation and treatment of insomnia in adult cancer survivorship programs.

J Cancer Surviv 2017 02 5;11(1):74-79. Epub 2016 Aug 5.

Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USA.

Purpose: Insomnia is commonly experienced by cancer survivors. Chronic insomnia is associated with significant physical and psychosocial consequences if not properly treated. Both the National Cancer Institute (NCI) and the National Comprehensive Cancer Network (NCCN) recommend the evaluation of sleep disturbances and evidence-based treatment of insomnia during routine survivorship care. To better understand current clinical practices, we conducted a survey of major cancer centers across the United States (US).

Methods: Adult survivorship programs at the 25 US cancer centers that are both NCI-designated comprehensive cancer centers and NCCN member institutions were surveyed about the evaluation and treatment of insomnia in their hospital.

Results: All institutions responded to the survey. Thirteen centers (56 %) reported screening <25 % of survivors for sleep disorders, and few clinicians providing survivorship care were well-prepared to conduct a proper sleep evaluation. Insomnia was most commonly treated with sleep hygiene, or pharmacotherapy, rather than cognitive-behavioral therapy. No program reported that >50 % of their survivors were receiving optimal insomnia-related care. A variety of methods to improve insomnia care were endorsed by respondents.

Conclusions: There is a clear need to improve the evaluation and treatment of insomnia for cancer survivors at institutions across the country. Cancer centers deemed a number of modalities relevant for improving provider confidence in addressing sleep challenges.

Implications For Cancer Survivors: To improve the quality of insomnia care for survivors, systematic interventions to increase standardized screening for sleep disorders, providing additional sleep medicine training for survivorship clinicians, and optimizing the role of sleep medicine specialists in the oncology setting should be considered.
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http://dx.doi.org/10.1007/s11764-016-0564-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5865603PMC
February 2017

Physical and emotional health information needs and preferences of long-term prostate cancer survivors.

Patient Educ Couns 2016 12 14;99(12):2049-2054. Epub 2016 Jul 14.

Perini Family Survivors' Center, Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, 25 Shattuck Street, Boston, MA, USA. Electronic address:

Objective: Many men diagnosed with prostate cancer (PC) will experience physical and psychosocial late effects of treatment. Their interest/preferences for receiving information about addressing common sequelae is not well understood. We examined long-term PC survivors' level of interest, whether this differed based upon symptomatology, and their preferred coping information source.

Methods: N=615 PC survivors (3-8 years post-diagnosis) completed a survey on physical and psychological health and their information interests and preferences related to late effects of cancer treatment.

Results: Over half of PC survivors reported interest in information about late effects of treatment or sexual health, while approximately a quarter were interested in emotional health information. Survivors preferred to receive information about late effects of treatment from their oncologists, sexual health information from their primary care providers (PCP), oncologist, or written/online resources, and emotional health information from their PCP. Information needs were more commonly reported among men with poorer domain-specific health functioning.

Conclusion: Long-term PC survivors report significant interest in receiving information about their physical, sexual, and emotional health.

Practice Implications: Medical providers caring for these men should inquire about survivors' information needs and future intervention efforts should consider who delivers the information, dependent upon the type of dysfunction reported.
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http://dx.doi.org/10.1016/j.pec.2016.07.017DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5675563PMC
December 2016

Comorbid symptoms of emotional distress in adult survivors of childhood cancer.

Cancer 2016 Oct 8;122(20):3215-3224. Epub 2016 Jul 8.

St. Jude Children's Research Hospital, Memphis, Tennessee.

Background: Childhood cancer survivors are at risk for emotional distress symptoms, but symptom comorbidity has not been previously examined. This study examined distress profiles for adult survivors of childhood cancer diagnosed between 1970 and 1999.

Methods: Self-reported depression, anxiety, and somatization symptoms from Brief Symptom Inventory 18 were examined in survivors (n = 16,079) and siblings (n = 3085) from the Childhood Cancer Survivor Study. A latent profile analysis identified clusters of survivors with individual and comorbid symptoms. Disease, treatment, and demographic predictors of distress comorbidity patterns were examined with multinomial logistic regressions.

Results: Four clinically relevant profiles were identified: low distress on all subscales (asymptomatic, 62%), high distress on all subscales (comorbid distress, 11%), elevated somatization (somatic symptoms, 13%), and elevated depression and anxiety (affective distress, 14%). Compared with siblings, fewer survivors were asymptomatic (62% vs 74%, P < .0001), and more had comorbid distress (11% vs 5%, P < .0001). Survivors of leukemia (odds ratio [OR], 1.34; 95% confidence interval [CI], 1.12-1.61), central nervous system tumors (OR, 1.30; 95% CI, 1.05-1.61), and sarcoma (OR, 1.26; 95% CI, 1.01-1.57) had a greater risk of comorbid distress than survivors of solid tumors. Psychoactive medications were associated with comorbid distress (P < .0001), and this suggested that this group was refractory to traditional medical management. Comorbid distress was associated with poor perceived health (OR, 31.7; 95% CI, 23.1-43.3), headaches (OR, 3.2; 95% CI, 2.8-3.7), and bodily pain (OR, 4.0; 95% CI, 3.2-5.0).

Conclusions: A significant proportion of survivors are at risk for comorbid distress, which may require extensive treatment approaches beyond those used for individual symptoms. Cancer 2016;122:3215-24. © 2016 American Cancer Society.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5048494PMC
http://dx.doi.org/10.1002/cncr.30171DOI Listing
October 2016

A pilot videoconference group stress management program in cancer survivors: lessons learned.

Rural Remote Health 2016 Apr-Jun;16(2):3863. Epub 2016 Jun 15.

Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Context: Cancer is a challenging experience and there is evidence that psychosocial interventions are effective at improving adjustment following treatment. At our cancer center, 14 cancer survivors (breast, prostate and blood cancers) completed a four-session cognitive-behavioral stress program. The first session was delivered at the survivor's local cancer center, where they were provided with a loaner tablet. The three subsequent sessions were delivered through group-based videoconference on the tablet. Session content was supplemented with a tailored ebook, designed specifically for this program. Participants provided feedback about the program as well as a standardized measure of perceived stress.

Issues: Despite evidence that psychosocial programs are effective, there are significant barriers to dissemination, particularly for those residing in rural areas who do not live near academic medical centers where such programming is more readily available. Our experiences delivering a group-based videoconference program in cancer survivors are described, including positives and challenges associated with its design and implementation.

Lessons Learned: Study participants enrolled from across four different US states, and the majority reported at least a 30-minute commute to their cancer center. This travel burden played a meaningful role in their desire to participate in our videoconference-based program. Although participants reported that session content was well suited to addressing stress management concerns, and session facilitators were able to effectively teach program techniques (eg progressive muscle relaxation, cognitive-reframing) and that the program was helpful overall, only modest improvements in perceived stress were seen. Participants noted challenges of the delivery including feeling disconnected from others, difficulty focusing, technical problems, and a desire for a longer program. Thus, although the novel delivery of a group-based, psychosocial program using tablet videoconference is feasible in a survivorship program, and desired by cancer survivors, key improvements must be made in future efforts. Our enthusiasm about the potential of telehealth must be tempered with the reality that such delivery can present challenges that interfere with the intervention implementation and efficacy. Facilitators must proactively address both the technological and interpersonal challenges associated with the use of group-based videoconference in order to improve its ability to positively impact cancer survivors. Many of these issues can be resolved prior to program launch, and require foresight and planning on the part of the program team.
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January 2017

Sexual Dysfunction in Young Adult Survivors of Childhood Cancer.

Pediatr Blood Cancer 2016 09 10;63(9):1622-8. Epub 2016 May 10.

Perini Family Survivors' Center, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA.

Background: Disruption of psychosexual development and sexual dysfunction are well recognized as profoundly distressing long-term side effects of pediatric cancer treatment. However, little is known about the specific sexual problems facing young adult survivors of childhood cancer (YASCC) and their unmet clinical needs. In this study, we aimed to utilize qualitative methods to characterize sexual dysfunction in YASCC and identify survivor-reported unmet clinical need regarding sexual health information and care.

Procedure: Semistructured interviews were conducted with 22 YASCC (ages 18-31; 10 men, 12 women) reporting sexual dysfunction. Interviews were conducted in English by phone or in person. All interviews were audiorecorded, transcribed verbatim, and analyzed using a thematic analysis approach. Inductive open-coding procedures identified participants' experiences with sexual dysfunction and clinical care needs. Themes were identified by grouping pattern-forming codes in the data.

Results: Interviews with YASCC reporting sexual dysfunction revealed five overarching themes including interruption of adolescent psychosocial development, physical and psychological problems with sexual function, altered perceptions of body image, concern about fertility, and inadequate clinical support.

Conclusions: The experiences described by YASCC provide valuable insight into the nature of sexual dysfunction in this population and their clinical care needs. These data provide the framework for future research on sexual dysfunction screening measures, patient-physician communication, and effective interventions to address sexual dysfunction in YASCC.
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http://dx.doi.org/10.1002/pbc.26041DOI Listing
September 2016