Framework for planning the delivery of psychosocial oncology services: An American psychosocial oncology society task force report.

OBJECTIVE: While screening for psychosocial distress is now the standard of care in oncology, little guidance is available on how best to deliver services in response to identified needs. The American Psychosocial Oncology Society (APOS) convened a task force with the goal of creating a framework that could aid in planning services and justifying requests for resources. METHODS: Ten experts from multiple disciplines within psychosocial oncology served on the task force, first meeting together as a larger group over 2 days to set an agenda and then subsequently working in smaller teams to execute the goals. The task force used consensus methods for developing recommendations. RESULTS: Three principles were identified for the framework. First, psychosocial oncology is a key component of population health, and population-based approaches to care delivery are required. Second, several key parameters shape psychosocial oncology services: resources, aims, and scope. To guide resource allocation, example priorities were identified for the aims and scope of services. Finally, cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care. A range of practices was ranked by their potential contributions to achieving that goal. CONCLUSIONS: This framework may aid in planning, evaluating, and refining the delivery of responsive psychosocial oncology services.

Consensus-Building efforts to identify best tools for screening and assessment for supportive services in oncology.

Purpose: To build consensus around an optimal patient-reported outcome measure of cancer symptoms and patient needs to facilitate patient-provider communication and trigger referrals to supportive services.Methods and materials: The Grid-Enabled Measures platform was used to crowdsource and facilitate collaboration to achieve consensus. Respondents were invited to nominate and independently rate the usefulness of measures that: (1) have been actively used at a healthcare institution, (2) have a multiple choice or yes/no type format, (3) are applicable to adults with cancer, (4) are patient-reported, and 5) have psychometric data if possible. Discussion boards within the GEM workspace allowed respondents to identify barriers to implementing patient assessment and referral systems.Results: 166 individuals from various disciplines from 25 organizations participated. Six instruments were nominated, and 553 rating surveys were submitted. The three most highly-rated overall instruments were the Distress Thermometer, the James Supportive Case Screening, and the Functional Assessment of Cancer Therapy-General. Participants noted that wide-scale implementation of this process requires both identifying problems and providing clinicians with algorithms to facilitate appropriate referrals.Conclusions: Consensus reported three most highly-related measures as optimal for comprehensive screening and identification for referral by assessing multiple domains of functioning and quality of life.Implications for RehabilitationGaining consensus on the best patient reported outcome measures is an important step towards improving access to cancer rehabilitation services.A consensus agreed on several measures to use for cancer rehabilitation screening. Functional Assessment of Cancer Therapy-General, National Comprehensive Cancer. Network Distress Thermometer and the James Instrument.The selected measures do not put undue burden on clinicians and patients.

Follow the trail: Using insights from the growth of palliative care to propose a roadmap for cancer rehabilitation.

Despite research explicating the benefits of cancer rehabilitation interventions to optimize physical, social, emotional, and vocational functioning, many reports document low rates of referral to and uptake of rehabilitation in oncology. Cancer rehabilitation clinicians, researchers, and policy makers could learn from the multidisciplinary specialty of palliative care, which has benefited from a growth strategy and has garnered national recognition as an important and necessary aspect of oncology care. The purpose of this article is to explore the actions that have increased the uptake and integration of palliative care to yield insights and multimodal strategies for the development and growth of cancer rehabilitation. After examining the history of palliative care and its growth, the authors highlight 5 key strategies that may benefit the field of cancer rehabilitation: 1) stimulating the science in specific gap areas; 2) creating clinical practice guidelines; 3) building clinical capacity; 4) ascertaining and responding to public opinion; and 5) advocating for public policy change. Coordinated and simultaneous advances on these 5 strategies may catalyze the growth, utilization, and effectiveness of patient screening, timely referrals, and delivery of appropriate cancer rehabilitation care that reduces disability and improves quality of life for cancer survivors who need these services.

The Intersection of Rehabilitation and Palliative Care: Patients With Advanced Cancer in the Inpatient Rehabilitation Setting.

BACKGROUND: Patients diagnosed with advanced cancer often differ from the traditional patient typically seen in the inpatient rehabilitation setting. PURPOSE: To identify differences in care while highlighting the considerable similarities between the complementary specialties of palliative care and rehabilitation, and to provide rehabilitation clinicians with knowledge and skills to enhance care for palliative care patients and their families. METHODOLOGY: Narrative literature review describing common functional losses in patients diagnosed with advanced cancer, followed by articulation of the intersection of palliative care with traditional rehabilitation approaches and goals. CONCLUSION: The evidence supports implementation of a distinct body of skills and knowledge, referred to as "palliative rehabilitation," among inpatient rehabilitation providers. CLINICAL IMPLICATIONS: Implementing palliative rehabilitation skills can improve the quality of care within the inpatient rehabilitation setting for patients with advanced cancer.

Making Cancer Rehabilitation Services Work for Cancer Patients: Recommendations for Research and Practice to Improve Employment Outcomes.

Cancer and its treatment can result in impairments that limit physical, psychosocial, and cognitive functioning, interfering with patients' ability to perform work-related functions. Because these work limitations can carry significant personal and societal costs, there is a timely need to identify and refer patients to cancer rehabilitation services to manage adverse consequences of treatment and to preserve employment. Coordinated efforts in 3 key areas will better connect patients to rehabilitation interventions that will help optimize employment. These include the following: planning for the impact of cancer on the ability to work; implementing routine screening for impairments and facilitating referrals to cancer rehabilitation specialists; and focusing rehabilitation interventions on preserving employment. Coordinated strategies are presented to achieve these 3 goals, including the following: implementing changes to clinical practice to routinely screen for impairments; working with oncology providers and patients to better understand the benefits of cancer rehabilitation to facilitate referrals and uptake; training more cancer rehabilitation providers to handle the increased need; better coordination of care across providers and with employers; and filling research gaps needed to proactively anticipate how cancer treatment would affect work for a given patient and deploy personalized interventions to preserve the ability to work.

Survivors of childhood cancer in the United States: prevalence and burden of morbidity.

BACKGROUND: No studies have estimated the population-level burden of morbidity in individuals diagnosed with cancer as children (ages 0-19 years). We updated prevalence estimates of childhood cancer survivors as of 2011 and burden of morbidity in this population reflected by chronic conditions, neurocognitive dysfunction, compromised health-related quality of life, and health status (general health, mental health, functional impairment, functional limitations, pain, and fear/anxiety). METHODS: Surveillance, Epidemiology, and End Results (SEER) Program data from 1975 to 2011 were used to update the prevalence of survivors of childhood cancers in the United States. Childhood Cancer Survivor Study data were used to obtain estimates of morbidity burden indicators, which were then extrapolated to SEER data to obtain population-level estimates. RESULTS: There were an estimated 388,501 survivors of childhood cancer in the United States as of January 1, 2011, of whom 83.5% are ≥5 years after diagnosis. The prevalence of any chronic condition among ≥5-year survivors ranged from 66% (ages 5-19) to 88% (ages 40-49). Estimates for specific morbidities ranged from 12% (pain) to 35% (neurocognitive dysfunction). Generally, morbidities increased by age. However, mental health and anxiety remained fairly stable, and neurocognitive dysfunction exhibited initial decline and then remained stable by time since diagnosis. CONCLUSIONS: The estimated prevalence of survivors of childhood cancer is increasing, as is the estimated prevalence of morbidity in those ≥5 years after diagnosis. IMPACT: Efforts to understand how to effectively decrease morbidity burden and incorporate effective care coordination and rehabilitation models to optimize longevity and well-being in this population should be a priority.

It takes a (virtual) village: crowdsourcing measurement consensus to advance survivorship care planning.

We report results from the use of an innovative tool (the Grid-Enabled Measures (GEM) database) to drive consensus on the use of measures evaluating the efficacy and implementation of survivorship care plans. The goal of this initiative was to increase the use of publicly available shared measures to enable comparability across studies. Between February and August 2012, research and practice communities populated the GEM platform with constructs and measures relevant to survivorship care planning, rated the measures, and provided qualitative feedback on the quality of the measures. Fifty-one constructs and 124 measures were entered into the GEM-Care Planning workspace by participants. The greatest number of measures appeared in the domains of Health and Psychosocial Outcomes, Health Behaviors, and Coordination of Care/Transitional Care. Using technology-mediated social participation, GEM presents a novel approach to how we measure and improve the quality of survivorship care.

Now what? Toward an integrated research and practice agenda in distress screening.

Significant gains have been made in the detection and treatment of cancer, contributing to increased survival, but a cancer diagnosis and treatment may be accompanied by physical and psychosocial after-effects. Distress screening has been championed as a mechanism to identify patients with high levels of psychosocial morbidity for subsequent assessment and psychosocial care delivery. However, implementation of distress screening has been variable, in scope and in the consistency and quality of metrics and methods used. This capstone article identifies challenges in the measurement and implementation of distress screening and examines future opportunities for research and implementation.

Case study: using a virtual reality computer game to teach fire safety skills to children diagnosed with fetal alcohol syndrome.

OBJECTIVE: To assess the effectiveness of a computer-based virtual reality (VR) game in teaching five children diagnosed with fetal alcohol syndrome (FAS) fire safety skills and to generalize these skills to a real world simulation. METHOD: Children participated in a study by using a multiple baseline, multiple probe design. Before the game, no child could correctly describe what actions to take during a home fire. A computerized game allowed them to learn the recommended safety steps in a virtual world. Skill learning and real-world generalization were tested immediately after the intervention and at 1-week post-test. RESULTS: All children reached 100% accuracy on the computer intervention, defined as successfully completing each of the safety steps. At the 1-week follow-up, all the children were able to perform the steps correctly in a real world simulation. CONCLUSIONS: The results suggest that this method of intervention warrants further study as an educational delivery system for children with FAS.

Intraclass correlation among measures related to cigarette use by adolescents: estimates from an urban and largely African American cohort.

This paper presents the first estimates of school-level intraclass correlation (ICC) for smoking-related variables from an urban and largely African American population. Seventh graders (n = 6967) from 39 middle schools in Memphis, TN, were measured at baseline in 1994 and annually through 1997. Mixed model regression methods were used to estimate variance components for school and residual error. School-level ICCs were large enough, if ignored, to substantially inflate the Type I error rate in an analysis of treatment effects. We show how those correlations can be reduced using regression adjustments and used to determine sample size for future school-based smoking prevention studies.