Developing a National Implementation Strategy to accelerate Uptake of Evidence-Based Family Caregiver Support in Us Cancer Centers

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: top factors for developing new caregiver programs were that the program be: consistent with the cancer center\u27s mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers

Association of Inventory to Measure and Assess imaGe Disturbance - Head and Neck Scores With Clinically Meaningful Body Image-Related Distress Among Head and Neck Cancer Survivors

Objective: The Inventory to Measure and Assess imaGe disturbance - Head and Neck (IMAGE-HN) is a validated patient-reported outcome measure of head and neck cancer-related body image-related distress (BID). However, the IMAGE-HN score corresponding to clinically relevant BID is unknown. The study objective is to determine the IMAGE-HN cutoff score that identifies head and neck cancer patients with clinically relevant BID. Methods: We conducted a cross-sectional study at six academic medical centers. Individuals ≥18 years old with a history of head and neck cancer treated with definitive intent were included. The primary outcome measure was the IMAGE-HN. A Receiver Operating Characteristic curve analysis was performed to identify the IMAGE-HN score that maximized sensitivity and specificity relative to a Body Image Scale score of ≥10 (which indicates clinically relevant BID in a general oncology population). To confirm the validity of the IMAGE-HN cutoff score, we compared the severity of depressive [Patient Health Questionnaire-9 (PHQ-9)] and anxiety symptoms [Generalized Anxiety Disorder-7 (GAD-7)], and quality of life [University of Washington-QOL (UW-QOL)] in patients with IMAGE-HN scores above and below the cutoff. Results: Of the 250 patients, 70.4% were male and the mean age was 62.3 years. An IMAGE-HN score of ≥22 was the optimal cutoff score relative to a Body Image Scale score of ≥10 and represents a clinically relevant level of head and neck cancer-related BID. Relative to those with an IMAGE-HN score of \u3c22, patients with IMAGE-HN scores of ≥22 had a clinically meaningful increase in symptoms of depression (mean PHQ-9 score difference = 5.8) and anxiety (mean GAD-7 score difference = 4.1) as well as worse physical (mean UW-QOL score difference = 18.9) and social-emotional QOL (mean UW-QOL score difference = 21.5). Using an IMAGE-HN cutoff score ≥22, 28% of patients had clinically relevant BID. Conclusion: An IMAGE-HN score of ≥22 identifies patients with clinically relevant head and neck cancer-related BID. This score may be used to detect patients who could benefit from strategies to manage their distress, select patients for studies evaluating interventions to manage head and neck cancer-related BID, and improve our understanding of the underlying epidemiology of the disorder

Comparison of psychosocial factors over time among HPV+ oropharyngeal cancer and tobacco-related oral cavity cancer patients

INTRODUCTION: The role of human papilloma virus (HPV) in the pathogenesis of oropharyngeal squamous cell carcinoma (OPSCC) is well documented, as is the excellent prognosis of patients with HPV-associated disease; in contrast, oral cavity squamous cell carcinoma (OCSCC) is associated with tobacco and alcohol use and has a worse prognosis. While causative factors, staging, and treatment guidelines differ between these cancer subsets, few studies have compared psychosocial factors in these groups. OBJECTIVE: To explore differences in psychosocial factors between HPV+ OPSCC patients versus OCSCC smokers. METHODS: A prospective cohort study at a single multidisciplinary, tertiary care HNC center was completed with recruitment from 2010 to 2013 using self-administered questionnaires before treatment and at 12 months. Patients were included with a diagnosis of HPV+ OPSCC or OCSCC with a smoking history. 38 (21 HPV+ OPSCC/17 OCSCC) met criteria. The main outcomes included self-efficacy, symptom severity, cancer worry, and depression. RESULTS: A total of 38 (21 HPV+ OPSCC/17 OCSCC) patients (mean age: 57 [32-76], 73.7% male, 78.9% Caucasian, 71% stage IV) met inclusion criteria. OPSCC patients tended to be of male sex, Caucasian race, and single. Furthermore, OPSCC patients were more likely than OCSCC patients to have private insurance, be employed, and use alcohol and tobacco less frequently. Regarding psychosocial factors, HPV+ OPSCC patients reported lower symptom severity (2.7 versus 3.3), depression (12.0 versus 14.0) and cancer worry (2.8 versus 3.2) at baseline compared to OCSCC patients. Depression decreased significantly over time in OPSCC patients (12.0 to 9.9; effect size: -3.2 (95% CI: -5.9 to -0.4)). Although not statistically significant, cancer worry decreased in both groups (2.8 to 2.4 and 3.2 to 2.7, respectively, effect sizes: -0.3 (95% CI: -0.7-0.08) and -0.6 (95% CI: -1.2-0.05), respectively). No statistically significant differences in patterns of change over time were noted between groups. CONCLUSIONS AND RELEVANCE: This pilot study highlighted a pattern of reduced quality of life parameters in OCSCC patients at baseline with similar improvements over time compared to the OPSCC cohort. Although different in cancer etiology and treatment plans, HPV+ OPSCC and tobacco-related OCSCC patients both require multidisciplinary cancer care plans that address psychosocial concerns. LEVEL OF EVIDENCE: 2B

Availability of patient-centered cancer support services: A statewide survey of cancer centers

<div><p>The Institute of Medicine recommended in their landmark report “From Cancer Patient to Cancer Survivor: Lost in Transition” that services to meet the needs of cancer patients should extend beyond physical health issues to include functional and psychosocial consequences of cancer. However, no systems exist in the US to support state-level data collection on availability of support services for cancer patients. Developing a mechanism to systematically collect these data and document service availability is essential for guiding comprehensive cancer control planning efforts. This study was carried out to develop a protocol for implementing a statewide survey of all Commission on Cancer (CoC) accredited cancer centers in South Carolina and to implement the survey to examine availability of patient support services within the state. We conducted a cross-sectional survey of CoC-certified cancer centers in South Carolina. An administrator at each center completed a survey on availability of five services: 1) patient navigation; 2) distress screening; 3) genetic risk assessment and counseling, 4) survivorship care planning; and 5) palliative care. Completed surveys were received from 16 of 17 eligible centers (94%). Of the 16 centers, 44% reported providing patient navigation; 31% reported conducting distress screening; and 44% reported providing genetic risk assessment and counseling. Over 85% of centers reported having an active palliative care program, palliative care providers and a hospice program, but fewer had palliative outpatient services (27%), palliative inpatient beds (50%) or inpatient consultation teams (31%). This was a small, yet systematic survey in one state. This study demonstrated a practical method for successfully monitoring statewide availability of cancer patient support services, including identifying service gaps.</p></div

Efficacy of a Brief Tele-Cognitive Behavioral Treatment vs Attention Control for Head and Neck Cancer Survivors With Body Image Distress: A Pilot Randomized Clinical Trial

IMPORTANCE: Although 1 in 4 head and neck cancer (HNC) survivors experience clinically significant body image distress (BID), a psychosocial morbidity that adversely affects quality of life, effective interventions for these patients are lacking. OBJECTIVE: To evaluate the acceptability and preliminary efficacy of BRIGHT (Building a Renewed ImaGe after Head and neck cancer Treatment), a brief tele-cognitive behavioral therapy, at reducing BID among HNC survivors. DESIGN, SETTING, AND PARTICIPANTS: This parallel-group pilot randomized clinical trial recruited adult HNC survivors with BID between August 13, 2020, and December 9, 2021, from the Medical University of South Carolina HNC clinic during a routine survivorship encounter. Data were analyzed from May 3 to June 16, 2022. INTERVENTIONS: BRIGHT consisted of 5 weekly psychologist-led video tele-cognitive behavioral therapy sessions. Attention control (AC) consisted of dose- and delivery-matched survivorship education. MAIN OUTCOMES AND MEASURES: Change in HNC-related BID was assessed using IMAGE-HN (Inventory to Measure and Assess imaGe disturbancE-Head and Neck), a validated patient-reported outcome (score range, 0-84, with higher scores indicating greater HNC-related BID). Clinical response rate was measured as the proportion of patients with a clinically meaningful change in IMAGE-HN scores. RESULTS: Of the 44 HNC survivors with BID allocated to BRIGHT (n = 20) or AC (n = 24), the median (range) age was 63 (41-80) years, and 27 patients (61%) were female. Patients rated BRIGHT\u27s acceptability highly (all metrics had a mean rating of ≥4.5/5), and 19 of 20 patients (95%) receiving BRIGHT were likely or highly likely to recommend it to other HNC survivors with BID. BRIGHT decreased HNC-related BID from baseline to 1 month postintervention relative to AC (mean model-based difference in change in IMAGE-HN score, -7.9 points; 90% CI, -15.9 to 0.0 points) and from baseline to 3 months postintervention relative to AC (mean model-based difference in change in IMAGE-HN score, -17.1 points; 90% CI, -25.6 to -8.6 points). At 3 months postintervention, the clinical response rate of BRIGHT was 6.6-fold higher than AC (model-based odds ratio, 6.6; 90% CI, 2.0-21.8). The improvement in HNC-related BID for BRIGHT vs AC at 3 months was clinically significant, and the effect size was large (Cohen d, -0.9; 90% CI, -1.4 to -0.4). CONCLUSIONS AND RELEVANCE: In this pilot randomized clinical trial, BRIGHT was acceptable, may result in a clinically meaningful improvement in HNC-related BID, and showed a high clinical response rate. These promising preliminary data support conducting a large efficacy trial to establish BRIGHT as the first evidence-based treatment for HNC survivors with BID. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03831100

Characteristics of patient navigation, distress screening and genetic risk assessment/counseling at CoC cancer centers in South Carolina, 2012.

<p>Characteristics of patient navigation, distress screening and genetic risk assessment/counseling at CoC cancer centers in South Carolina, 2012.</p

Availability of palliative care services at CoC cancer centers in South Carolina, 2012.

<p>Availability of palliative care services at CoC cancer centers in South Carolina, 2012.</p

Availability of survivorship care planning services in CoC cancer centers in South Carolina, 2012.

<p>Availability of survivorship care planning services in CoC cancer centers in South Carolina, 2012.</p

Factors Associated With Risk of Body Image-Related Distress in Patients With Head and Neck Cancer

Importance: Body image-related distress (BID) is common among head and neck cancer (HNC) survivors and associated with significant morbidity. Risk factors for HNC-related BID remain poorly characterized because prior research has used outcome measures that fail to fully capture BID as experienced by HNC survivors. Objective: To assess the association of demographic and oncologic characteristics with HNC-related BID using the Inventory to Measure and Assess imaGe disturbancE-Head & Neck (IMAGE-HN), a validated, multidomain, patient-reported outcome measure of HNC-related BID. Design, Setting, and Participants: This cross-sectional study assessed 301 adult survivors of surgically managed HNC at 4 academic medical centers. Main Outcomes and Measures: The primary outcome measure was IMAGE-HN scores, for which higher scores reflect more severe HNC-related BID. Multivariable linear regression analyses were performed to evaluate the association of patient characteristics with IMAGE-HN global and 4 subdomain (other-oriented appearance concerns, personal dissatisfaction with appearance, distress with functional impairments, and social avoidance) scores. Results: Of the 301 participants (212 [70.4%] male; mean [SD] age, 65.3 [11.7] years), 181 (60.1%) underwent free flap reconstruction. Graduation from college (β = -9.6; 95% CI, -17.5 to -1.7) or graduate school (β = -12.6; 95% CI, -21.2 to -3.8) was associated with lower IMAGE-HN social avoidance scores compared with less than a high school education. Compared with paid work, unemployment was associated with higher IMAGE-HN other-oriented appearance (β = 10.7; 95% CI, 2.0-19.3), personal dissatisfaction with appearance (β = 12.5; 95% CI, 1.2-23.7), and global (β = 8.0; 95% CI, 0.6-15.4) scores. Compared with no reconstruction, free flap reconstruction was associated with higher IMAGE-HN global scores (β = 11.5; 95% CI, 7.9-15.0) and all subdomain scores (other-oriented appearance: β = 13.1; 95% CI, 8.6-17.6; personal dissatisfaction with appearance: β = 15.4; 95% CI, 10.0-20.7; distress with functional impairment: β = 12.8; 95% CI, 8.1-17.4; and social avoidance and isolation: β = 10.2; 95% CI, 5.8-14.6). Higher IMAGE-HN distress with functional impairment scores were found in those who received surgery and adjuvant radiation (β = 7.8; 95% CI, 2.9-12.7) or chemoradiotherapy (β = 6.5; 95% CI, 1.8-11.3) compared with surgery alone. The multivariable regression model accounted for a modest proportion of variance in IMAGE-HN global (R2 = 0.18) and subdomain scores (R2 = 0.20 for other-oriented appearance, 0.14 for personal dissatisfaction with appearance, 0.21 for distress with functional impairment, and 0.13 for social avoidance and isolation). Conclusions and Relevance: In this cross-sectional study, factors associated with risk of HNC-related BID included free flap reconstruction, lower educational attainment, unemployment, and multiple treatment modalities. These characteristics explain a modest proportion of variance in IMAGE-HN scores, suggesting that other characteristics may be the major risk factors for HNC-related BID and should be explored in future studies

Caregiver engagement practices in National Cancer Institute Clinical Oncology Research Program settings: Implications for research to advance the field

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/166251/1/cncr33296_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/166251/2/cncr33296.pd