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. In this prospective multisite study, 215 AYAs aged 15-39 years were assessed for psychological distress and psychosocial support service use within the first 4 months of diagnosis and again 6 and 12 months later. On the basis of distress scores, respondents were assigned to one of four distress trajectory groups (Resilient, Recovery, Delayed, and Chronic). Multiple logistic regression analyses examined whether demographics, clinical variables, and reports of unsatisfied need for psychosocial support were associated with distress trajectories over 1 year. Twelve percent of AYAs reported clinically significant chronic distress throughout the first 12 months following diagnosis. An additional 15% reported delayed distress. Substantial proportions of AYAs reported that needs for information (57%), counseling (41%), and practical support (39%) remained unsatisfied at 12 months following diagnosis. Not getting counseling needs met, particularly with regard to professional mental health services, was observed to be significantly associated with distress over time. Substantial proportions of AYAs are not utilizing psychosocial support services. Findings suggest the importance of identifying psychologically distressed AYAs and addressing their needs for mental health counseling throughout a continuum of care.

Zebrack BJ ，Corbett V ，Embry L ，Aguilar C ，Meeske KA ，Hayes-Lattin B ，Block R ，Zeman DT ，Cole S ... -  《-》

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. Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Zebrack BJ ，Block R ，Hayes-Lattin B ，Embry L ，Aguilar C ，Meeske KA ，Li Y ，Butler M ，Cole S ... -  《-》

Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer.

Predictors of psychological distress and unmet needs amongst adolescents and young adults (AYAs) who have a brother or sister diagnosed with cancer were examined. There were 106 AYAs (12-24 years old) who completed questionnaires covering demographics, psychological distress (Kessler 10), unmet needs (Sibling Cancer Needs Instrument) and family relationships (Family Relationship Index; Adult Sibling Relationship Questionnaire; Sibling Perception Questionnaire (SPQ)). Three models were analysed (demographic variables, cancer-specific variables and family functioning variables) using multiple linear regression to determine the role of the variables in predicting psychological distress and unmet needs. Unmet needs were higher for AYA siblings when treatment was current or a relapse had occurred. Higher scores on the SPQ-Interpersonal subscale indicating a perceived decrease in the quality of relationships with parents and others were associated with higher levels of distress and unmet needs. The age and gender of the AYA sibling, whether it was their brother or sister who was diagnosed with cancer, the age difference between them, the number of parents living with the AYA sibling, parental birth country, time since diagnosis, Family Relationship Index, Adult Sibling Relationship Questionnaire and the SPQ-Communication subscale did not significantly impact outcome variables. These results highlight the variables that can assist in identifying AYA siblings of cancer patients who are at risk and have a greater need for psychosocial assistance. Variables that may be associated with increased distress and unmet needs are reported to assist with future research. The results are also useful in informing the development of targeted psychosocial support for AYA siblings of cancer patients.

McDonald FE ，Patterson P ，White KJ ，Butow P ，Bell ML ... -  《-》

Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study.

Kwak M ，Zebrack BJ ，Meeske KA ，Embry L ，Aguilar C ，Block R ，Hayes-Lattin B ，Li Y ，Butler M ，Cole S ... -  《-》

What goes up does not always come down: patterns of distress, physical and psychosocial morbidity in people with cancer over a one year period.

As the concept of distress as the 6th vital sign gains strength in cancer care, research on the experience of patients is critical. This study longitudinally examined patients' physical and psychosocial concerns over the year following diagnosis. Between July 2007 and February 2008, patients attending a large tertiary cancer centre were recruited to participate in a study examining their levels of distress, pain, fatigue, depression and anxiety over a year. A total of 877 patients provided baseline data with 620, 589 and 505 retained at 3, 6 and 12 months, respectively. Overall, levels of distress, depression and anxiety decreased significantly over the study period. No significant changes were found in levels of pain or fatigue. Demographics (being unmarried) and medical interventions (particularly having radiation therapy) predicted persistent distress, anxiety and depression, whereas receiving psychosocial support predicted decreased levels of distress, anxiety and depression. Some patients reported continued clinical levels of distress (29%), pain (19%) and fatigue (40%) 12 months post diagnosis. For some people, distress, depression, and anxiety may be transient and decrease over time, but for others they may be sustained. Pain and fatigue may remain present in many cancer patients. There is a need to modify current clinical practice to facilitate the appropriate assessment and management of distress.

Carlson LE ，Waller A ，Groff SL ，Giese-Davis J ，Bultz BD ... -  《-》