Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. ...We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.
Trying to simultaneously achieve developmental milestones and cope with a life-threatening disease may place adolescents and young adults (AYAs) at risk for impaired health-related quality of life ...(HRQoL) later in life. The aim of this study was to examine differences in HRQoL between AYA lymphoma survivors and a normative population and to determine sociodemographic, clinical and long-term symptom-related factors associated with HRQoL.
This study was part of a longitudinal, population-based survey among lymphoma survivors diagnosed between 1999 and 2012. The AYA survivor sample (18-39 years at time diagnosis) was compared to a sex- and age-matched normative population on HRQoL (EORTC-QLQ-C30) and psychological distress (HADS). Multiple linear regression analyses were conducted to determine factors associated with HRQoL among survivors.
One hundred and ninety-eight AYA lymphoma survivors (58%) responded to the study invitation. Compared to an age- and sex-matched normative population (N = 380), significantly and clinically relevant poorer HRQoL was observed for AYA lymphoma survivors in seven specific domains of HRQoL: physical, role, cognitive, emotional, social functioning, fatigue and financial difficulties (all p < 0.05). In addition, AYA lymphoma survivors less often had a spouse/partner and more often had a lower educational level compared to the normative population. Linear regression analyses showed that being unemployed, female gender, having one or more comorbid conditions, high levels of fatigue and psychological distress were most strongly associated with HRQoL.
These findings identify specific domains of life in which cancer has a significant and long-term impact for AYA lymphoma survivors. Future investigations are needed to identify and test administrations and timing of psychosocial support interventions having potential to reduce long-term late effects in specific HRQoL domains and promote function and adaptability after cancer treatment.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Purpose
The purpose of this study is to understand physician management of thyroid cancer-related worry.
Methods
Endocrinologists, general surgeons, and otolaryngologists identified by Surveillance, ...Epidemiology, and End Results (SEER) patients were surveyed 2018–2019 (response rate 69% (448/654)) and asked to rate in general their patients’ worry at diagnosis and actions they take for worried patients. Multivariable-weighted logistic regressions were conducted to determine physician characteristics associated with reporting thyroid cancer as “good cancer” and with encouraging patients to seek help managing worry outside the physician-patient relationship.
Results
Physicians reported their patients as quite/very worried (65%), somewhat worried (27%), and a little/not worried (8%) at diagnosis. Half of the physicians tell patients their thyroid cancer is a “good cancer.” Otolaryngology (odds ratio (OR) 1.87, 95% confidence interval (CI) 1.08–3.21, versus endocrinology), private practice (OR 2.48, 95% CI 1.32–4.68, versus academic setting), and Los Angeles (OR 2.24, 95% CI 1.45–3.46, versus Georgia) were associated with using “good cancer.” If patients are worried, 97% of physicians make themselves available for discussion, 44% refer to educational websites, 18% encourage communication with family/friends, 13% refer to support groups, and 7% refer to counselors. Physicians who perceived patients being quite/very worried were less likely to use “good cancer” (OR 0.54, 95% CI 0.35–0.84) and more likely to encourage patients to seek help outside the physician-patient relationship (OR 1.82, 95% CI 1.17–2.82).
Implications for Cancer Survivors
Physicians perceive patient worry as common and address it with various approaches, with some approaches of unclear benefit. Efforts are needed to develop tailored interventions targeting survivors’ psychosocial needs.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Adolescents and young adults (AYAs) with cancer have unique cancer care needs that differ significantly from younger and older cancer patients. There has been an increasing appreciation for this ...unique group of patients internationally, with a rise in research and establishment of innovative models of care dedicated to addressing their needs. This narrative review identifies common elements and barriers to care for AYA cancer patients and survivors, and offers recommendations for developing clinical care models for this age-defined population.
This chapter first defines the adolescence and young adulthood (AYA) population and then discusses how their unique developmental challenges interact with their cancer experience. In light of a small ...yet emerging evidence base, the chapter concludes by considering developmentally appropriate approaches to psychosocial care and support for this special population.
The purpose of this study is to further our understanding of the positive and negative psychosocial aspects of cancer survivors' quality of life and factors that contribute to it at different points ...throughout the life span. Using both quantitative and qualitative methods, this project (1) describes the physical, psychological, social and spiritual/existential aspects of quality of life and life changes reported by 53 long-term survivors of leukemia and lymphoma, (2) identifies ways in which medical, demographic and psychosocial factors are associated with self-reported quality of life and life change, and (3) explores the extent to which life changes attributed to the cancer experience are associated with variation in quality of life outcomes. A major assumption investigated is the role of cognitive adaptation (i.e. meaning-making, cognitive appraisal, worrying) in understanding quality of life. Cognitive adaptation is viewed here as conditioning the effects of medical variables (age at diagnosis, physical after-effects, health status), demographic variables (age/life stage, gender, income) and psychosocial variables (social support) on quality of life. In spite of the existence of physical sequelae, most survivors reported positive changes and benefits in their lives which they attributed to their cancer experience. Survivors aged in their 20's and 30's were significantly more likely to report more positive changes attributable to their cancer than older survivors, Survivors who tended to report predominantly negative changes had significantly lower quality of life, Although reporting positive changes was not significantly related to overall quality of life nor with measures of quality of life in the physical, psychological and social domains, reporting positive change (1) did appear to condition the association between negative change and quality of life and (2) was significantly and positively associated with quality of life in the existential/spiritual domain. Findings suggest that a positive integration of the cancer experience is associated with identity transformation and one's sense of vulnerability. Young adult survivors are more likely to be engaging in identity transformation, and thus more likely to derive positive change from the experience. Psychosocial support interventions provide opportunities for survivors to acknowledge the cancer experience's potential for promoting positive integration and personal growth.
The changing organization of health care requires social workers to deal with a variety of new demands, and in some cases alter their traditional professional practice. Using the specific case of ...childhood cancer as a framework (or set of case examples), this paper identifies key issues faced by oncology social workers in hospital settings under managed care and ways they have responded to them. The general content involves pressures on oncology social workers to adapt to the new corporate culture and ideals fundamental to managed care at the same time that the expressed psychsocial needs and desires of survivors of childhood cancer necessitate increased attention and expansion of service provision. Caught in conflicts that challenge them to reconcile 90simultaneous commitments to client service/empowerment and institutional conformity, social workers must establish a more powerful position to negotiate institutional and public policies that uphold the primacy of a core Social Work ethic: A commitment to client-centered service. Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678, E-mail address: getinfo@haworthpressinc.comgtentity Website: ltentityhttp://www.HaworthPress.com gtentity
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