Caring for family members with chronic physical illness: A critical review of caregiver literature

This article reviews 19 studies (1987–2004) on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them. Results indicate that stress-related variables as possible predictors influencing caregivers' quality of life include: patient and caregiver characteristics, stressors, stress appraisal, stress coping methods, and social support. Our recommendations touch upon applying theory for intervention, developing measurement, making operable the concepts for measuring, and the need for longitudinal and comprehensive study

To achieve (E)quality health care for childhood cancer survivors

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/111230/1/21572_ftp.pd

The state of psychosocial services in cancer care in the United States

Objective In 2009, the APOS commissioned a survey of its members and attendees of the annual meetings in 2008 and 2009. The goal of the survey was to assess the scope of psychosocial support services for cancer patients in the USA. Methods Two hundred thirty‐three individuals (27% response rate) completed the survey, which included questions assessing the extent to which respondents' institutions provided informational and psychosocial support services and conducted screening for psychosocial distress. Results Respondents were primarily psychologists, although oncologists, nurses, social workers, and others were represented, as well. A broad array of informational and support services were endorsed as being provided to cancer patients, both at no charge or for a fee. Respondents identified social workers as the professionals most often providing psychosocial services to cancer patients. Respondents also indicated that most psychosocial services have not been tailored to fit a culturally diverse population. Furthermore, most of the organizations represented in the survey do not routinely screen cancer patients for psychosocial distress. Conclusions A broad range of psychosocial services are provided in cancer treatment settings; however, despite National Comprehensive Cancer Network and Institute of Medicine recommendations, routine screening for distress is not offered in a majority of cancer care organizations. Despite the racial, ethnic, cultural, and linguistic diversity of the US population, most organizations have not adapted their educational materials nor their psychosocial services to meet the needs of a diverse patient population. Copyright © 2012 John Wiley & Sons, Ltd.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/96770/1/pon3057.pd

Addressing Distress Management Challenges: Recommendations From the Consensus Panel of the American Psychosocial Oncology Society and the Association of Oncology Social Work

Distress management (DM) (screening and response) is an essential component of cancer care across the treatment trajectory. Effective DM has many benefits, including improving patients’ quality of life; reducing distress, anxiety, and depression; contributing to medical cost offsets; and reducing emergency department visits and hospitalizations. Unfortunately, many distressed patients do not receive needed services. There are several multilevel barriers that represent key challenges to DM and affect its implementation. The Consolidated Framework for Implementation Research was used as an organizational structure to outline the barriers and facilitators to implementation of DM, including: 1) individual characteristics (individual patient characteristics with a focus on groups who may face unique barriers to distress screening and linkage to services), 2) intervention (unique aspects of DM intervention, including specific challenges in screening and psychosocial intervention, with recommendations for resolving these challenges), 3) processes for implementation of DM (modality and timing of screening, the challenge of triage for urgent needs, and incorporation of patient-reported outcomes and quality measures), 4) organization—inner setting (the context of the clinic, hospital, or health care system); and 5) organization—outer setting (including reimbursement strategies and health-care policy). Specific recommendations for evidence-based strategies and interventions for each of the domains of the Consolidated Framework for Implementation Research are also included to address barriers and challenges. CA Cancer J Clin 2021;71:407-436. © 2021 The Authors. CA: A Cancer Journal for Clinicians published by Wiley Periodicals LLC on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial- NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made

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

ObjectiveTheories 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.Method165 AYA patients aged 14–39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth.ResultsNo significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12‐month follow‐up. However, curvilinear relationships between re‐experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed.ConclusionFindings suggest that re‐experiencing is associated with some aspects of posttraumatic growth but not others. Although re‐experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re‐experiencing and suggest that re‐experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re‐experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer. Copyright © 2014 John Wiley & Sons, Ltd.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/110582/1/pon3585.pd

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

Purpose 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. Methods 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. Results 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. Conclusions 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. Copyright © 2014 John Wiley & Sons, Ltd.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/109318/1/pon3533.pd

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

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/141907/1/cncr31030_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/141907/2/cncr31030.pd

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

Objectives 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. Methods As part of a longitudinal study of AYAs with cancer, 151 patients aged 15–39 years completed mailed surveys at 6 and 12 months post‐diagnosis. Severity of PTSS was estimated at 6 and 12 months post‐diagnosis. Multiple regression analyses were conducted to investigate the predictive effects of socio‐demographic and clinical characteristics on changes in PTSS over time. Results At 6 and 12 months, respectively, 39% and 44% of participants reported moderate to severe levels of PTSS; 29% had PTSS levels suggestive of post‐traumatic stress disorder. No significant differences in severity of PTSS between 6 and 12 months were observed. Regression analyses suggested that a greater number of side effects were associated with higher levels of PTSS at 6 months. Currently receiving treatment, having surgical treatment, diagnosis of a cancer type with a 90–100% survival rate, remaining unemployed/not in school, and greater PTSS at 6 months were associated with higher levels of PTSS at 12 months. Conclusions Post‐traumatic stress symptoms were observed as early as 6 months following diagnosis and remained stable at 12‐month follow‐up. The development of early interventions for reducing distress among AYA patients in treatment is recommended. Copyright © 2012 John Wiley & Sons, Ltd.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/99033/1/pon3217.pd

Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study

ObjectiveThis cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes.MethodsParticipants (nâ =â 465, ages 15â 39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2 years postâ cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2 years postâ diagnosis.ResultsFortyâ nine percent of AYAs reported negative effects on sexual function at 1 year postâ cancer diagnosis and 70% of those persisted in their negative perceptions 2 years after diagnosis. Those reporting a negative impact at 2 years were more likely to be 25 years or older (OR, 2.53; 95% CI, 1.44â 4.42), currently not raising children (OR, 1.81; 95% CI, 1.06â 3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975â 0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97â 4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function.ConclusionsMany AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2 years following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright © 2016 John Wiley & Sons, Ltd.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/138867/1/pon4181_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/138867/2/pon4181.pd

The Changing Landscape for Stroke\ua0Prevention in AF: Findings From the GLORIA-AF Registry Phase 2

Background GLORIA-AF (Global Registry on Long-Term Oral Antithrombotic Treatment in Patients with Atrial Fibrillation) is a prospective, global registry program describing antithrombotic treatment patterns in patients with newly diagnosed nonvalvular atrial fibrillation at risk of stroke. Phase 2 began when dabigatran, the first non\u2013vitamin K antagonist oral anticoagulant (NOAC), became available. Objectives This study sought to describe phase 2 baseline data and compare these with the pre-NOAC era collected during phase 1. Methods During phase 2, 15,641 consenting patients were enrolled (November 2011 to December 2014); 15,092 were eligible. This pre-specified cross-sectional analysis describes eligible patients\u2019 baseline characteristics. Atrial fibrillation disease characteristics, medical outcomes, and concomitant diseases and medications were collected. Data were analyzed using descriptive statistics. Results Of the total patients, 45.5% were female; median age was 71 (interquartile range: 64, 78) years. Patients were from Europe (47.1%), North America (22.5%), Asia (20.3%), Latin America (6.0%), and the Middle East/Africa (4.0%). Most had high stroke risk (CHA2DS2-VASc [Congestive heart failure, Hypertension, Age  6575 years, Diabetes mellitus, previous Stroke, Vascular disease, Age 65 to 74 years, Sex category] score  652; 86.1%); 13.9% had moderate risk (CHA2DS2-VASc = 1). Overall, 79.9% received oral anticoagulants, of whom 47.6% received NOAC and 32.3% vitamin K antagonists (VKA); 12.1% received antiplatelet agents; 7.8% received no antithrombotic treatment. For comparison, the proportion of phase 1 patients (of N = 1,063 all eligible) prescribed VKA was 32.8%, acetylsalicylic acid 41.7%, and no therapy 20.2%. In Europe in phase 2, treatment with NOAC was more common than VKA (52.3% and 37.8%, respectively); 6.0% of patients received antiplatelet treatment; and 3.8% received no antithrombotic treatment. In North America, 52.1%, 26.2%, and 14.0% of patients received NOAC, VKA, and antiplatelet drugs, respectively; 7.5% received no antithrombotic treatment. NOAC use was less common in Asia (27.7%), where 27.5% of patients received VKA, 25.0% antiplatelet drugs, and 19.8% no antithrombotic treatment. Conclusions The baseline data from GLORIA-AF phase 2 demonstrate that in newly diagnosed nonvalvular atrial fibrillation patients, NOAC have been highly adopted into practice, becoming more frequently prescribed than VKA in Europe and North America. Worldwide, however, a large proportion of patients remain undertreated, particularly in Asia and North America. (Global Registry on Long-Term Oral Antithrombotic Treatment in Patients With Atrial Fibrillation [GLORIA-AF]; NCT01468701