Rebecca Block

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services.

Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis.

Identifying at‐risk adolescent and young adult (AYA) cancer patients and referring them to age‐appropriate psychosocial support services may be instrumental in reducing psychological distress and promoting psychosocial adaptation. The purpose of this study is to identify trajectories of clinically significant levels of distress throughout the first year following diagnosis and to distinguish factors, including supportive care service use, that predict the extent to which AYAs report distress.

Prevalence and predictors of post‐traumatic stress symptoms in adolescent and young adult cancer survivors: a 1‐year follow‐up study

Post‐traumatic stress symptoms (PTSS) have been identified as a meaningful indicator of distress in cancer survivors. Distinct from young adult survivors of childhood cancer, young people diagnosed with cancer as adolescents and young adults (AYAs) face unique psychosocial issues; however, there is little published research of PTSS in the AYA population. This study examines prevalence and predictors of PTSS among AYAs with cancer.

The relationship between posttraumatic stress and posttraumatic growth among adolescent and young adult (AYA) cancer patients

Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients.

Health-Related Quality of Life in Adolescent and Young Adult Patients With Cancer: A Longitudinal Study

Purpose To examine changes in health-related quality of life (HRQoL) and its predictors during the first 2 years after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Patients and Methods A multicenter, longitudinal, prospective study was conducted among a diverse sample of AYA patients with cancer ages 15 to 39 years. One hundred seventy-six patients (75% response) completed a self-report measure of HRQoL (Short Form-36 [SF-36]) within the first 4 months after diagnosis and again 12 and 24 months later. Linear mixed models with random intercepts and slopes estimated changes in QoL. Results Recently diagnosed AYA patients with cancer had significantly worse physical component scale (PCS) scores (38.7 v 52.8; P < .001) and mental component scale (MCS) scores (42.9 v 48.9; P < .001) when compared with population norms. Significant improvements in PCS and MCS scores from baseline to 24-month follow-up were observed; however, these increases were largest during the first 12 months. At the 24-month follow-up, AYA patients still had significantly lower PCS scores (48.0 v 52.8; P < .001) and MCS scores (45.8 v 48.9; P = .002) when compared with population norms. Multivariable analyses revealed that improvements in PCS and MCS scores were primarily a function of being off-treatment and being involved in school or work. PCS but not MCS scores were worse for AYA patients diagnosed with cancers with poorer prognoses. Conclusion Although HRQoL improved over time, it was still compromised 24 months after primary diagnosis. Given relatively little observed improvement in HRQoL during the 12- to 24-month period after diagnosis, AYA patients may benefit from supportive care interventions administered during the second year after diagnosis.

Patients’ Perception of Patient–Provider Communication in Fertility Preservation Decision Making Among Young Women With Cancer

Fertility preservation (FP) for patients with cancer is an emerging field. With the advancement of technology, patients may face a complex decision-making process about whether to preserve fertility. The purpose of this article is to explore how young women with cancer perceive patient–provider communication in FP decision making. In this study, 25 women between the ages of 18 and 39 were interviewed retrospectively. They were interviewed one time to learn about their decision-making process related to FP. Results of this analysis indicate that patients seek support and involvement from providers throughout the process of decision making. They prefer providers to be directive when referring to the fertility clinic. Later in the process, they expect a supportive style of communication from providers. Patient-accessible language, supportive and reassuring styles of communication, and an existing relationship with providers may enhance well-being of the patients.

Sexual functioning among young adult cancer patients: A 2-year longitudinal study

Cancer‐related sexual dysfunction has been reported among adolescents and young adults (AYAs); however, its prevalence over time has not been examined. This longitudinal study investigated sexual dysfunction in AYAs over the course of 2 years after the initial diagnosis.

Personality Traits and Health-Related Quality of Life Among Adolescent and Young Adult Cancer Patients: The Role of Psychological Distress.

Personality may affect the way adolescents and young adults (AYAs) with cancer report health-related quality of life (HRQoL). Patients aged 15-39 years (n = 165) completed a survey at 12-16 months postdiagnosis. The survey included questions on HRQoL (SF-36), distress Brief Symptom Inventory-18, and personality (NEO-Five-Factor Inventory). Personality traits were not associated with physical HRQoL. The personality trait neuroticism was negatively associated with mental HRQoL (β = -0.37; p < 0.001) and positively with psychological distress (β = 0.47; p < 0.001). Hierarchical regression and mediation analyses indicated that psychological distress fully mediated the association between neuroticism and mental HRQoL. Findings emphasize the importance of psychosocial intervention for distress in AYAs with cancer.

Facilitating Teamwork in Adolescent and Young Adult Oncology

A case of a young adult patient in the days immediately after a cancer diagnosis illustrates the critical importance of three interrelated core coordinating mechanisms-closed-loop communication, shared mental models, and mutual trust-of teamwork in an adolescent and young adult multidisciplinary oncology team. The case illustrates both the opportunities to increase team member coordination and the problems that can occur when coordination breaks down. A model for teamwork is presented, which highlights the relationships among these coordinating mechanisms and demonstrates how balance among them works to optimize team function and patient care. Implications for clinical practice and research suggested by the case are presented.

Oregon patients with HIV infection who experience delayed diagnosis

This project sought to understand factors contributing to the delayed diagnosis of HIV in the state of Oregon, USA in order to increase timely testing and diagnosis. People unaware of their positive HIV status account for a disproportionate number of transmissions of HIV, making delayed diagnosis a profound public health concern. We interviewed a sample of 17 adults, diverse in age, reported risk behaviors and sexual orientation, who were identified as being diagnosed late, about their experiences with testing and diagnosis. We defined delayed diagnosis as a diagnosis of AIDS within 12 months of the first positive HIV test. We conducted thematic analysis using NVivo® software for data management. Three overarching themes emerged: risk perception, missed opportunities for diagnosis, routine testing and the role of the medical community. Definitions of these themes, corresponding sub-themes, and illustrious quotations provide an informative description of characteristics of late testers, factors contributing to delayed diagnosis, and potential points of intervention to increase regular and timely testing. We conclude that routine HIV screening as part of regular medical care might significantly reduce the number of delayed diagnoses and minimize the stigma of testing by normalizing it as part of routine medical care. Earlier diagnosis of HIV will result in better outcomes for individual patients and lower rates of HIV transmission by unknowing individuals.