Assessment of cognitive function in long-term Hodgkin lymphoma survivors, results based on data from a major treatment center in Hungary.

INTRODUCTION: Nowadays, more than 80% of newly diagnosed classical Hodgkin lymphoma (HL) patients can be cured and become long-term survivors due to risk and response-adapted treatment strategies. A well-known side effect is cognitive dysfunction that appears in HL patients after chemotherapy. In the present study, we aimed to measure cognitive dysfunction in our HL patients in this study and to find potential correlations between patient-related factors, the signs and symptoms of their diseases, or therapeutic factors. METHODS: We carried out a computer-assisted assessment (CANTAB) of cognitive dysfunction in 118 patients. We examined the domains of visual memory, attention, working memory, and planning. RESULTS: The median age of 64 females and 54 males at diagnosis was 29 (13-74) and 41 (21-81) years at the completion of CANTAB. Fifty-two percent of all patients showed cognitive impairment. Attention was impaired in 35% of patients, the working memory and planning were impaired in 25%, while visual memory was affected in 22%. All the three functions showed a significant association with inactive employments status. A close correlation was found between visual memory/working memory and planning, higher age at HL diagnosis or the completion of CANTAB test, and disability pensioner status. DISCUSSION: Our investigation suggests that patients with inactive employment status and older age require enhanced attention. Their cognitive function and quality of life can be improved if they return to work or, if it is not possible, they receive a cognitive training.

Real time remote symptom monitoring during chemotherapy for cancer: European multicentre randomised controlled trial (eSMART).

OBJECTIVE: To evaluate effects of remote monitoring of adjuvant chemotherapy related side effects via the Advanced Symptom Management System (ASyMS) on symptom burden, quality of life, supportive care needs, anxiety, self-efficacy, and work limitations. DESIGN: Multicentre, repeated measures, parallel group, evaluator masked, stratified randomised controlled trial. SETTING: Twelve cancer centres in Austria, Greece, Norway, Republic of Ireland, and UK. PARTICIPANTS: 829 patients with non-metastatic breast cancer, colorectal cancer, Hodgkin's disease, or non-Hodgkin's lymphoma receiving first line adjuvant chemotherapy or chemotherapy for the first time in five years. INTERVENTION: Patients were randomised to ASyMS (intervention; n=415) or standard care (control; n=414) over six cycles of chemotherapy. MAIN OUTCOME MEASURES: The primary outcome was symptom burden (Memorial Symptom Assessment Scale; MSAS). Secondary outcomes were health related quality of life (Functional Assessment of Cancer Therapy-General; FACT-G), Supportive Care Needs Survey Short-Form (SCNS-SF34), State-Trait Anxiety Inventory-Revised (STAI-R), Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer), and work limitations questionnaire (WLQ). RESULTS: For the intervention group, symptom burden remained at pre-chemotherapy treatment levels, whereas controls reported an increase from cycle 1 onwards (least squares absolute mean difference -0.15, 95% confidence interval -0.19 to -0.12; P<0.001; Cohen's D effect size=0.5). Analysis of MSAS sub-domains indicated significant reductions in favour of ASyMS for global distress index (-0.21, -0.27 to -0.16; P<0.001), psychological symptoms (-0.16, -0.23 to -0.10; P<0.001), and physical symptoms (-0.21, -0.26 to -0.17; P<0.001). FACT-G scores were higher in the intervention group across all cycles (mean difference 4.06, 95% confidence interval 2.65 to 5.46; P<0.001), whereas mean scores for STAI-R trait (-1.15, -1.90 to -0.41; P=0.003) and STAI-R state anxiety (-1.13, -2.06 to -0.20; P=0.02) were lower. CASE-Cancer scores were higher in the intervention group (mean difference 0.81, 0.19 to 1.43; P=0.01), and most SCNS-SF34 domains were lower, including sexuality needs (-1.56, -3.11 to -0.01; P<0.05), patient care and support needs (-1.74, -3.31 to -0.16; P=0.03), and physical and daily living needs (-2.8, -5.0 to -0.6; P=0.01). Other SCNS-SF34 domains and WLQ were not significantly different. Safety of ASyMS was satisfactory. Neutropenic events were higher in the intervention group. CONCLUSIONS: Significant reduction in symptom burden supports the use of ASyMS for remote symptom monitoring in cancer care. A "medium" Cohen's effect size of 0.5 showed a sizable, positive clinical effect of ASyMS on patients' symptom experiences. Remote monitoring systems will be vital for future services, particularly with blended models of care delivery arising from the covid-19 pandemic. TRIAL REGISTRATION: Clinicaltrials.gov NCT02356081.

Multidisciplinary Management of Adolescent and Young Adult Patients with Hodgkin Lymphoma.

OPINION STATEMENT: Successful management of adolescent and young adult patients with Hodgkin lymphoma (HL) requires a multidisciplinary approach to care with special attention paid to the unique medical, logistical, and psychosocial challenges faced by this group. The emotional and social changes and big life transitions that occur between the ages of 15 and 39 result in a broad scope of supportive care needs that differ from children or adults in similar circumstances. Currently, care of adolescent and young adult (AYA) patients with HL may be fractured across the pediatric-adult cancer care continuum resulting in this group being less well studied than pediatric or adult patients in general. In order to optimize outcomes, these patients need access to medical oncologists and radiation oncologists, advanced practice providers (APPs), psychologists/social work, financial support services, fertility specialists, survivorship care, and advocates with AYA expertise that can help navigate the healthcare system. A strong AYA support system established early with targeted education and resources may influence treatment compliance and likelihood of long-term follow-up. Surveys of the AYA cancer population have identified areas of opportunity for the healthcare team to collaborate to identify needs, design interventions to meet them, and ultimately develop evidence-based guidelines that will enable us to offer AYAs with HL the quality care they deserve.

Prevalence of cognitive impairment and its relation to mental health in Danish lymphoma survivors.

PURPOSE: This study sought to investigate the prevalence of self-reported cognitive impairment and its relation to illness and treatment characteristics and mental health in Hodgkin lymphoma (HL) and diffuse large B cell lymphoma (DLBCL) survivors as cancer-related cognitive impairment has not been extensively studied in lymphoma survivors. METHODS: One hundred fifteen HL and DLBCL survivors (mean age = 40.3 years, mean months since completed treatment = 29.6) completed questionnaires on executive function and mental health. We examined the prevalence of executive impairment and compared illness and treatment characteristics and mental health across survivors reporting impaired and non-impaired executive functioning using chi-square, Cochran-Armitage, and Mann-Whitney U tests. RESULTS: We found that 39% reported executive impairment. Survivors reporting impaired executive functioning reported worse mental health (ps < .001) than survivors reporting non-impaired executive functioning. A larger proportion of the impaired group had received a high chemo dose compared to the non-impaired group although this result fell short of significance after adjustment for multiple comparisons (p = .017). CONCLUSIONS: Self-reported cognitive impairment is prevalent in HL and DLBCL survivors and is associated with worse mental health and possibly high chemo dose. Future studies should investigate objective impairment and the possible dose-response relationship between chemo dose and cognitive impairment in lymphoma survivors.

The interplay between cancer-related fatigue and functional health in Hodgkin lymphoma survivors.

OBJECTIVE: Cancer-related fatigue (CRF) is among the most distressing symptoms reported by cancer survivors as compromising their quality of life. This study investigates the complex interplay between CRF and functional health (FH) in survivors of Hodgkin lymphoma by using longitudinal data to clarify the etiology of CRF. METHODS: Data from N = 3596 survivors (HD13-15) from the German Hodgkin Study Group was analyzed using bivariate latent curve models with structured residuals to model how the interplay between CRF and FH unfolds over time across and within individuals. CRF and FH were measured with the EORTC QLQ-C30. Assessed FH domains were physical, cognitive, emotional, social, and role functioning. Age at diagnosis, gender, country, baseline fatigue, and cancer stage were included as covariates. RESULTS: The latent curve models with structured residuals had an adequate model fit (χ² = 416.63-548.28, df = 114, p < .001, root mean square error of approximation = .03, comparative fit index = .98-.99, Tucker-Lewis index = .97-.98). On the between-person level, CRF and all FH domains were strongly negatively correlated (r = -.72 to r = -.84). On the within-person level, earlier CRF (ρF = -.05 to ρF = -.12) and FH deviations (ρFH = -.05 to ρFH = -.13) negatively predicted subsequent deviations of the respective other variable. Time-specific within-person improvements in physical, cognitive, and emotional functioning reduced CRF more than vice versa, whereas the effect of CRF was stronger for social functioning. Role functioning had a balanced relation with CRF. CONCLUSIONS: This analysis reveals a complex reciprocal relation between CRF and FH with distinct between- and within-person effects. The results contribute to a better understanding of CRF in survivors of Hodgkin lymphoma and could inform the development of much-needed targeted interventions. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Health-Related Quality of Life in Patients With Hodgkin Lymphoma: A Longitudinal Analysis of the German Hodgkin Study Group.

PURPOSE: Many important details of health-related quality of life (HRQoL) after diagnosis and treatment of Hodgkin lymphoma (HL) are still unknown because large longitudinal studies of HRQoL are rare. Therefore, we analyzed a systematically assessed, comprehensive range of HRQoL domains in patients with HL of all stages from diagnosis up to 5 years of survivorship. PATIENTS AND METHODS: We included patients with HL age 18-60 years at diagnosis from the German Hodgkin Study Group trials HD13, HD14, and HD15. We analyzed HRQoL using all functional and symptom scales of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 including deviations from reference values. We estimated the effect of different disease, patient, and treatment characteristics using multiple regression and repeated measures analysis and computed correlations of HRQoL scores. RESULTS: We analyzed 4,215 patients with any HRQoL assessment within 5 years after treatment. Higher tumor burden at diagnosis was associated with impaired baseline scores in many HRQoL domains. During survivorship, cognitive, emotional, role, and social functioning and fatigue, dyspnea, sleep, and financial problems were severely and persistently affected. From year 2 on, mean deviations from reference values ranged between 12 and 29 points, with 10 points being a commonly used margin of clinical relevance. In all 3 trials, HRQoL domains 2 and 5 years after therapy were significantly influenced by baseline scores and age but not by randomized treatments. Fatigue was most closely correlated with other symptoms and scales. CONCLUSION: Our results show a high and persistent amount of different HRQoL deficits in survivors of HL that are largely independent of the applied chemotherapies. Our analysis underscores the high, unmet medical need of these rather young survivors of HL regarding the psychosocial adverse effects of the cancer experience.

Negative illness perceptions are related to more fatigue among haematological cancer survivors: a PROFILES study.

Objectives: The common sense model provides a theoretical framework for understanding substantial fatigue among (haematological) cancer survivors based on their illness perceptions. We therefore examined the associations between modifiable illness perceptions and substantial fatigue while controlling for sociodemographic, clinical, and psychological factors (symptoms of depression and anxiety) among haematological cancer survivors.Methods: Data from the population-based PROFILES registry were used. Survivors diagnosed between 1999 and 2013 with Hodgkin lymphoma (N = 164), non-Hodgkin lymphoma (N = 655) and chronic lymphocytic leukaemia (N = 174) were included. Survivors completed the Brief Illness Perception Questionnaire (B-IPQ), the Fatigue Assessment Scale (FAS), and Hospital Anxiety and Depression Scale (HADS). Multivariable logistic regressions analyses were performed for the total group and three haematological cancers separately relating illness perceptions to substantial fatigue (>21 FAS).Results: Haematological cancer survivors with illness perceptions that represent more negative consequences (consequences, OR = 1.27; 95%CI = 1.13-1.42); attribute more symptoms to their illness (identity, OR = 1.29; 95%CI = 1.17-1.43); and have a poorer illness understanding (coherence, 1.13; 1.04-1.22) were more often substantially fatigued. For the remaining five illness perceptions, no significant association was found. Non-Hodgkin lymphoma survivors who reported a poor illness understanding (coherence, OR = 1.35; 95% CI = 1.06-1.72) and chronic lymphocytic leukaemia survivors who reported that treatment can control (OR = 1.25; 95%CI = 1.01-1.55) the illness experienced more often substantial fatigue.Conclusion: Those who experience more consequences of their disease, attribute more symptoms to their illness, and have a poorer illness understanding, have a higher risk to experience substantial levels of fatigue even years after diagnosis. Psychological interventions changing these illness perceptions may be beneficial in reducing fatigue among haematological cancer survivors.

Hodgkin Lymphoma Survivor Wellness: Development of a Web-Based Intervention.

BACKGROUND: Informational and supportive care resources are needed for Hodgkin lymphoma (HL) survivors. OBJECTIVES: The aim of this article is to adapt and evaluate a previously developed survivorship care website for HL survivors. METHODS: A mixed-methods, user-centered design, including one-time focus groups, was followed by iterative web design and user testing. Transcripts were content analyzed, and survey responses were summarized. FINDINGS: HL survivors need survivorship care education and support. Tailored web-based resources may be an effective adjunct to clinical care. The Survivor Wellness website is a usable web-based resource for HL survivors that may facilitate survivorship care.

Long-term causes of death among pediatric patients with cancer.

BACKGROUND: The objectives of this study were to characterize the risk of death (1) from the primary cancer vs competing cause of death; and (2) from various causes of death vs the general poplation. The relative risk of death after a pediatric cancer diagnosis versus the general population and the risk of death from a primary cancer diagnosis versus competing causes of death. METHODS: This retrospective, population-based study used the Surveillance, Epidemiology, and End Results database (1980-2015) and included patients aged 0 to 19 years at the time of diagnosis. Observed deaths were calculated; the risk of death versus the general population was assessed with standardized mortality ratios (SMRs). Competing risk models for the cause of death were performed. RESULTS: There were 58,356 patients who were diagnosed, and the mortality rate was 22.8%. To assess causes of death, 6996 patients who died during the study period were included (45,580 total person-years at risk): 5128 (73%) died of their primary cancer, and 1868 (27%) died of a competing cause. Among all patients, the rate of death from the index cancer was higher than the rate of death from another cause within the first 5 years after diagnosis. The risk of death from a nonprimary cancer began to supersede the rate of death from the primary cancer 10 years after diagnosis for patients with germ cell tumors, lymphomas, and sarcomas. SMRs for the primary cancer were highest within the first 5 years after diagnosis for all cancers (SMRs, 100-50,000; P < .0001). The risk of death from competing causes (heart disease, suicide, and sepsis) was elevated (SMR, >100; P < .001). The risk of dying of heart disease was high, especially for patients with astrocytomas (SMR, 47.84; 95% confidence interval [CI], 27.87-76.59) and neuroblastomas (SMR, 98.59; 95% CI, 47.28-181.32). The risk of dying of suicide was high in most patients, particularly for those with osteosarcomas (SMR, 111.40; 95% CI, 2.82-620.69), Hodgkin lymphomas (SMR, 62.35; 95% CI, 34.89-102.83), and gonadal germ cell tumors (SMR, 28.97; 95% CI, 12.51-57.09). CONCLUSIONS: The cause of death for patients with gonadal germ cell tumors, lymphomas, and sarcomas is more commonly a secondary cancer or noncancerous cause than the primary disease; their risk of death from competing causes (heart disease, suicide, and sepsis) rises throughout life.

Sustained degradation of quality of life in a subgroup of lymphoma survivors: a two-year prospective survey.

BACKGROUND: Previous studies have suggested that lymphoma survivors commonly display altered Health-Related Quality of Life (HRQoL). Because these were predominantly cross-sectional studies, the dynamic of events as well as the factors which influence HRQoL remain to be determined. METHODS: We conducted a prospective study on a cohort of 204 Hodgkin and non-Hodgkin lymphoma survivors who remained disease-free 2 years after undergoing chemotherapy (referred to the M0-M12-M24 periods). RESULTS: We found that although Physical and Mental Component Scores (PCS and MCS) of HRQoL significantly improved from M0 to M24 in the vast majority of patients (favorable group), approximately 20% of patients displayed severe alterations in HRQoL (global SF-36 scores < 50) extending over the 2-year period (unfavorable group). Low M24 PCSs were associated with Post-Traumatic Stress Disorder (PTSD), depression, cardiovascular events and neuropathy. In contrast social determinants, comorbidity and infections, as well as several other parameters related to the disease or to the treatment itself were not associated with low M24 PCSs. Low M24 MCSs were associated with a low educational level, aggressive histology, infections, cardiovascular events and PTSS. However, the most predictive risk factor for low SF-36 scores at M24 was a low SF-36 score at M12. The unfavorable group also displayed a low incidence of return to work. CONCLUSIONS: Although the HRQoL of lymphoma survivors generally improved over time, persistent and severe HRQoL alterations still affected approximately one fifth of patients, resulting in important social consequences. This specific group, which presents with identifiable risk factors, may benefit from early, targeted psycho-social support.

Fatigue level changes with time in long-term Hodgkin and non-Hodgkin lymphoma survivors: a joint EORTC-LYSA cross-sectional study.

BACKGROUND: Long-term lymphoma survivors often complain of persistent fatigue that remains unexplained. While largely reported in Hodgkin lymphoma (HL), long-term fatigue is poorly documented in non-Hodgkin lymphomas (NHL). Data collected in two cohort studies were used to illustrate the fatigue level changes with time in the two populations. METHODS: Two cross-sectional studies were conducted in 2009-2010 (HL) and in 2015 (NHL) in survivors enrolled in European Organisation for Research and Treatment of Cancer (EORTC) Lymphoma Group and Lymphoma Study Association (LYSA) trials. The same protocol and questionnaires were used in both studies including the Multidimensional Fatigue Inventory (MFI) tool to assess fatigue and a checklist of health disorders. Multivariate linear regression models were used in the two populations separately to assess the influence of time since diagnosis and primary treatment, age, gender, education level, cohabitation status, obesity and health disorders on fatigue level changes. Fatigue level changes were compared to general population data. RESULTS: Overall, data of 2023 HL and 1619 NHL survivors with fatigue assessment available (99 and 97% of cases, respectively) were analyzed. Crude levels of fatigue were similar in the two populations. Individuals who reported health disorders (61% of HL and 64% of NHL) displayed higher levels of fatigue than those who did not (P <  0.001). HL survivors showed increasing fatigue level with age while in NHL survivors mean fatigue level remained constant until age 70 and increased beyond. HL survivors showed fatigue changes with age higher than those of the general population with health disorders while NHL survivors were in between those of the general population with and without health disorders. CONCLUSIONS: Among lymphoma survivors progressive increase of fatigue level with time since treatment completion is a distinctive feature of HL. Our data suggest that changes in fatigue level are unlikely to only depend on treatment complications and health disorders. Investigations should be undertaken to identify which factors including biologic mechanisms could explain why a substantial proportion of survivors develop high level of fatigue.

Socioeconomic impact of Hodgkin lymphoma in adult patients: a systematic literature review.

Hodgkin lymphoma is a highly curable disease with a peak incidence in young adulthood at times where education, family, and social relations are established. We performed a systematic literature review to assess the impact of Hodgkin lymphoma on the socioeconomic status of adolescent and adult survivors (including educational achievements, occupational aspects, marriage, and parenthood). In total, 39 articles were included. Overall, 26-36% of survivors perceived Hodgkin lymphoma as negatively affecting their socioeconomic status. Studies consistently found educational achievements in line with general population. Employment rates for survivors were comparable to the general population, but lower than before Hodgkin lymphoma diagnosis, with a post-diagnosis increase in disability pension and early retirement. Employed survivors encountered problems related to physical restrictions and recruitment. Marriage and parenthood were not substantially affected. In conclusion, current studies suggest acceptable socioeconomic outcomes following a Hodgkin lymphoma diagnosis but the use of standardized reporting methods hampers comparability across studies.

Fear of cancer recurrence in Non- and Hodgkin lymphoma survivors during their first three years of survivorship among French patients.

The aim of this study was to measure the prevalence of FCR among a sample of French lymphoma survivors and to determine factors associated with clinical levels of FCR. The study was conducted with two cross-sectional measures: sociodemographic and anxiety, depression as well as health-related quality of life (HRQoL) scores were measured at the baseline of the post-cancer period and FCR was evaluated during the first 3 years of survivorship. The prevalence of clinical levels of FCR (≥13) was evaluated by the Fear of Cancer Recurrence Inventory - Short Form (FCRI-SF) among non- and Hodgkin lymphoma survivors undergoing prior first-line chemotherapy. Among 108 lymphoma survivors with an average follow-up of 1.6 years (range 0.3-3.0 years), clinical levels of FCR (≥13) were observed for 44.4% (n = 48). Multivariate analysis indicated that baseline anxiety and low quality of life were related to clinically significant FCR levels.

Use of recommended posttreatment services for adolescent and young adult survivors of Hodgkin lymphoma.

BACKGROUND: Hodgkin lymphoma (HL) is a leading cancer diagnosis for adolescents and young adults (AYAs), with an overall 5-year survival rate of >80%. However, to the authors' knowledge, little is known regarding posttreatment patterns of care. In the current study, the authors characterized the use of guideline-recommended services in a cohort of AYA survivors of HL in Kaiser Permanente Southern California. METHODS: Patients with HL who were diagnosed between ages 15 and 39 years between 2000 and 2010 were identified. The authors calculated the number of patients who received recommended short-term care within 2 years after treatment cessation for those who remained enrolled and alive from 2001 through 2015. Use of recommended late-effects screening for breast cancer and cardiovascular disease was examined. Logistic regression was used to evaluate the association between receipt of recommended care and patient, cancer, and treatment characteristics. RESULTS: A total of 354 patients were identified, with a mean age at the time of diagnosis of 26 years (standard deviation, 6.9 years). Approximately 12% of patients had stage I disease, 59% had stage II disease, 17% had stage III disease, and 13% of patients had stage IV disease. Nearly all patients received chemotherapy (95%), 51% received radiotherapy, and 5% received care from a pediatric oncologist. Overall, approximately 49% of patients received recommended short-term care. Of those patients eligible for cardiovascular screening at 10 years posttreatment (60 patients), 53% received at least 1 screening. Of those patients eligible for breast cancer screening (21 patients), approximately 50% underwent at least 1 screening. Regression results indicated that those patients treated by a pediatric oncologist were >3 times as likely to receive recommended short-term care. CONCLUSIONS: The results of the current study highlight gaps in the delivery of posttreatment care to AYA survivors of HL. By determining areas in need of improvement, these findings can guide the development of tailored interventions with which to improve care.

The nature and timing of distress among post-treatment haematological cancer survivors.

Many people with haematological cancers will not meet the diagnostic criteria for a psychological disorder, but will still suffer distress during treatment and beyond. The current study aimed to explore the nature and timing of psychosocial distress experienced by haematological cancer survivors. Twenty-three post-treatment haematological cancer survivors participated in a semi-structured interview. Data were analysed using thematic analysis which involved identifying, analysing and reporting themes. Four themes were identified: Apprehension about leaving the safety of the health care system comprises the struggles encountered when transitioning from patient to survivor, Uncertainty and life transitions in the post-treatment period encompasses the changes survivors face when attempting to re-enter their "normal" lives, Distress associated with ongoing physical problems or impairment describes issues associated with the ongoing physical sequelae, and Fear of recurrence encapsulates how the continuing threat of cancer recurrence impacted survivors. This study has found that distress is ongoing for many haematological cancer survivors in the post-treatment period. It is imperative that distress is identified and support offered to those in need to prevent further psychosocial issues. It is especially important to consider the psychosocial needs of survivors in the post-treatment stage who are discharged from the health system may be unsure where to seek help.

Stress Resilience in Late Adolescence and Survival among Cancer Patients: A Swedish Register-Based Cohort Study.

BACKGROUND: Chronic stress has been suggested to play a role in cancer progression, but few studies have so far examined the potential influence of stress susceptibility. This national register-based cohort study utilizes a unique data source to investigate whether a stress resilience measure is associated with survival in cancer patients. METHODS: The cohort includes 9,318 Swedish male cancer patients born during 1952 to 1956 who had their stress resilience evaluated at a semistructured interview with a psychologist during mandatory conscription examination in late adolescence. RESULTS: Over a median of 3 years of follow-up from cancer diagnosis, a total of 2,541 patients died (2,322 from cancer). Overall, low (23%) compared with high (25%) stress resilience was associated with increased mortality (adjusted hazard ratio estimated by Cox regression 1.45; 95% confidence interval 1.28-1.65), particularly among men with carcinomas of the oropharynx (2.62, 1.24-5.56), upper respiratory tract (4.64, 1.05-20.41), and prostate (2.20, 1.04-4.62), as well as with Hodgkin lymphoma (3.52, 1.40-8.86). An association was evident for both cancer types associated with smoking (1.35, 1.10-1.66) and malignancies without an established smoking etiology (1.32, 1.12-1.56). The association between low stress resilience and mortality could partly be explained by tumor stage, marital status, and psychiatric comorbidity at cancer diagnosis. CONCLUSIONS: We observed an association between low stress resilience and mortality among men diagnosed with cancer, particularly oropharyngeal cancer, upper respiratory tract cancers, prostate cancer, and Hodgkin lymphoma. IMPACT: These results suggest that individual variation in stress resilience may influence survival among men with some cancer types.

A narrative analysis of the stories of mothers who have parented a child with Hodgkin lymphoma who is currently in early survivorship.

AIMS AND OBJECTIVES: To explore the lived experience of mothers of children who have survived Hodgkin lymphoma, from diagnosis, through treatment and recovery as she has lived it and in her own words and to discuss the self-reported experiences in the context of the theoretical propositions of Attachment Theory and birth order as it applies to the mother-child dyad with this life experience. BACKGROUND: While much has been written about childhood cancer survivors and their parents independently, there are unique struggles that a mother and a childhood cancer survivor face as a dyad. Examining the dyadic relationship over time offers a unique perspective to understanding the parenting experience with a child whose fate is uncertain. DESIGN AND METHOD: Narrative Inquiry was utilised to explore the bonds the mother has with her child before he or she is diagnosed with cancer, the relationship during treatment and the subsequent relationship when the child has entered survivorship. Most specifically, the research explored the attachment of the mother to her child as it relates to the Caregiving System. A purposive sample of 13 mothers of children diagnosed with Hodgkin lymphoma representing children from each birth order category (youngest child, middle child, oldest child and only child) was chosen. The interviews were analysed through thematic analysis with final themes identified. RESULTS: Several core themes emerged from the narratives regardless of birth order. The most significant was the "need to protect." Additional themes were "things will never be the same," "unique bond," "shifting priorities" and "lost innocence." CONCLUSIONS AND RELEVANCE TO PRACTICE: The research shows activation of the Caregiving Behavioral Response System as it relates as a reciprocal to Attachment Theory.

Patient-reported distress in Hodgkin lymphoma across the survivorship continuum.

PURPOSE: Hodgkin lymphoma (HL) survivors face long-term, elevated risk of treatment-related sequelae, including psychosocial distress associated with poor health outcomes. The magnitude and sources of distress are not well described in the routine care of HL outside of clinical trials. METHODS: We conducted a retrospective cohort study of patients visiting a tertiary-care center for treatment or long-term follow-up of HL. Patient-reported distress was documented using the National Comprehensive Cancer Network Distress Thermometer (DT) and Problem List. Three survivor groups were compared using descriptive methods: on treatment, surviving < 5 years, and surviving ≥ 5 years since diagnosis. RESULTS: A total of 1524 DT were abstracted for 304 patients (106 on treatment, 77 surviving < 5 years, and 121 surviving ≥ 5 years). Distress was low overall (median DT = 1, inter-quartile range 0-4) and was similar across survivor groups. However, actionable distress (score ≥ 4) was reported at 29.5% of clinical encounters. Patients on treatment more frequently reported actionable distress (32.5% of visits) compared with patients surviving < 5 years (20.4%) and ≥ 5 years (28.7%) (P = 0.065). Distress was associated primarily with physical and emotional problems, especially fatigue, worry, and sleep. We did not observe any associations between distress and clinical prognostic factors. CONCLUSIONS: Distress burden is low in HL, but survivorship is marked by periods of actionable distress, largely related to physical symptoms and emotional issues. This burden may be higher when on treatment and is unrelated to disease-related prognostic factors. Survivorship research typically focuses on the post-therapy period, but our results support testing the efficacy of interventions to address distress in HL during active treatment as well.

Efficacy of a survivorship-focused consultation versus a time-controlled rehabilitation consultation in patients with lymphoma: A cluster randomized controlled trial.

BACKGROUND: Survivors of cancer often describe a sense of abandonment after treatment along with heightened uncertainty and limited knowledge of what lies ahead. This study examined the efficacy of a survivorship care plan (SCP) intervention to help physicians to address survivorship issues through communication skills training plus a new consultation focused on the use of an SCP for patients with Hodgkin lymphoma and diffuse large B-cell lymphoma. METHODS: This 4-site cluster randomized trial examined the efficacy of a survivorship planning consultation (SPC) in patients who achieved complete remission after the completion of first-line therapy (for the SPC, physicians received communication skills training and, using an SCP, applied those skills in a survivorship-focused office visit) versus a control arm in which physicians were trained in and subsequently provided a time-controlled, manualized wellness rehabilitation consultation (WRC) focused only on discussion of healthy nutrition and exercise as rehabilitation after chemotherapy. The primary outcomes for patients were changes in knowledge about lymphoma and adherence to physicians' recommendations for vaccinations and cancer screenings. RESULTS: Forty-two physicians and 198 patients participated across the 4 sites. Patients whose physicians were in the SPC arm had greater knowledge about their lymphoma (P = .01) and showed greater adherence to physician recommendations for influenza vaccinations (P = .02) and colonoscopy (P = .02) than patients whose physicians were in the WRC arm. CONCLUSIONS: A dedicated consultation using an SCP and supported by communication skills training may enhance patients' knowledge and adherence to some health promotion recommendations.