Cancer care coordination in rural Hawaii: a focus group study.

BACKGROUND: Rural populations consistently experience a disproportionate burden of cancer, including higher incidence and mortality rates, compared to the urban populations. Factors that are thought to contribute to these disparities include limited or lack of access to care and challenges with care coordination (CC). In Hawaii, many patients residing in rural areas experience unique challenges with CC as they require inter-island travel for their cancer treatment. In this focus group study, we explored the specific challenges and positive experiences that impact the CC in rural Hawaii cancer patients. METHODS: We conducted two semi-structured focus group interviews with cancer patients receiving active treatment for any type of cancer (n = 8). The participants were recruited from the rural areas of Hawaii, specifically the Hawaii county and Kauai. Rural was defined using the Rural-Urban Commuting Area Codes (RUCA; rural ≥ 4). The focus group discussions were facilitated using open-ended questions to explore patients' experiences with CC. RESULTS: Content analysis revealed that 47% of the discussions were related to CC-related challenges, including access to care (27.3%), insurance (9.1%), inter-island travel (6.1%), and medical literacy (4.5%). Other major themes from the discussions focused on facilitators of CC (30.3%), including the use of electronic patient portal (12.1%), team-based approach (9.1%), family caregiver support (4.5%), and local clinic staff (4.5%). CONCLUSION: Our findings indicate that there are notable challenges in rural patients' experiences regarding their cancer care coordination. Specific factors such as the lack of oncologist and oncology services, fragmented system, and the lack of local general medical providers contribute to problems with access to care. However, there are also positive factors found through the help of facilitators of CC, notability the use of electronic patient portal, team-based approach, family caregiver support, and local clinic staff. These findings highlight potential targets of interventions to improve cancer care delivery for rural patients. TRIAL REGISTRATION: Not required.

Time to Diagnosis and Treatment Initiation During the COVID-19 Pandemic Among Rural Patients With Cancer.

Time to diagnosis (TTD) and treatment initiation (TTI) are important measures of access to and quality of cancer care. This study addresses the knowledge gap on the impact of the COVID-19 pandemic on TTD and TTI for rural cancer patients. Sixty-three cancer patients residing in rural areas of the state of Hawaii were surveyed in 2020 to 2021. Overall, 67.5% of participants reported TTD within one month of reporting symptoms to a health care provider. Mean TTI for the overall sample was 55.3 days, and among breast cancer patients, 57.9 days. Compared with pre-pandemic state registry data, mean TTI for the overall sample and breast cancer patients were significantly longer than the state registry null value of 40 days (P = .02 and P =.05, respectively). During the COVID-19 pandemic, cancer patients in rural Hawaii experienced substantial delays in TTI compared with pre-pandemic years.

Patient reports of cancer care coordination in rural Hawaii.

PURPOSE: Rural residents experience disproportionate burdens of cancer, and poorer cancer health outcomes in rural populations are partly attributed to care delivery challenges. Cancer patients in rural areas often experience unique challenges with care coordination. In this study, we explored patient reports of care coordination among rural Hawaii patients with cancer and compared rural and urban patients' perceptions of cancer care coordination. METHODS: 80 patients receiving active treatment for cancer from rural Hawaii participated in a care coordination study in 2020-2021. Participants completed the Care Coordination Instrument, a validated oncology patient questionnaire. FINDINGS: Mean age of rural cancer patients was 63.0 (SD = 12.1), and 57.7% were female. The most common cancer types were breast and GI. Overall, rural and urban patients' perceptions of care coordination were comparable (p > 0.05). There were statistically significant differences between rural and urban patients' perceptions in communication and navigation aspects of care coordination (p = 0.02 and 0.04, respectively). Specific differences included a second opinion consultation, clinical trial considerations, and after-hours care. 43% of rural patients reported traveling by air for part or all of their cancer treatment. CONCLUSIONS: Findings suggest that while overall perceptions of care coordination were similar between rural and urban patients, differential perceptions of specific care coordination areas between rural and urban patients may reflect limited access to care for rural patients. Improving access to cancer care may be a potential strategy to enhance care coordination for rural patients and ultimately address rural-urban cancer health disparities.

Through the Lens of Patient Partners: Challenges in Accrual of Older Adults to NCI Clinical Trials.

The workshop "Engaging Older Adults in Cancer Clinical Trials Conducted in the NCI Clinical Trials Network: Challenges and Opportunities" included a Patient Stakeholder Workgroup that explored the needs and concerns of older adults with cancer regarding clinical trials. To accomplish this, the workgroup conducted patient focus groups in which participants were interviewed, recorded conversations were analyzed and coded, and salient themes were identified. The focus groups identified general barriers to accrual such as complex consent forms, general communication, restrictive eligibility, nonreferrals, patient costs, cultural insensitivity, limited accessibility in community settings, and transportation issues. They also identified the influence of knowledgeable information presenters, improved care, family or caregiver support, and the desire to help others as drivers or reasons to participate in clinical trials. The workshop concluded that multi-level interventions could be used to increase the accrual of older adults to National Cancer Institute clinical trials as well as others.

Clinical Research Professional Providing Care Coordination Support: A Study of Hawaii Minority/Underserved NCORP Community Site Trial Participants.

PURPOSE: Although effective care coordination (CC) is recognized as a vital component of a patient-centered, high-quality cancer care delivery system, CC experiences of patients who enroll and receive treatment through clinical trials (CTs) are relatively unknown. Using mixed methods, we examined perceptions of CC among patients enrolled onto therapeutic CTs through the Hawaii Minority/Underserved National Cancer Institute Community Oncology Research Program. METHODS: The Care Coordination Instrument, a validated instrument, was used to measure patients' perceptions of CC among CT participants (n = 45) and matched controls (n = 45). Paired t-tests were used to compare overall and three CC domain scores (Communication, Navigation, and Operational) between the groups. Semistructured focus group interviews were conducted virtually with 14 CT participants in 2020/2021. RESULTS: CT participants reported significantly higher total CC scores than non-CT participants (P = .0008). Similar trends were found for Navigation and Operational domain scores (P = .007 and .001, respectively). Twenty-nine percent of CT participants reported receiving high-intensity CC assistance from their clinical research professionals (CRPs). Content analysis of focus group discussions revealed that nearly half of the focus group discussions centered on CRPs (47%), including CC support provided by CRPs (26%). Other key themes included general CT experiences (22%) and CRP involvement as an additional benefit to CT participation (15%). CONCLUSION: Our results show that patients on CTs in this study had a more positive CC experience. This may be attributable in part to CC support provided by CRPs. These findings highlight both the improved experience of treatment for patients participating in a trial and the generally unrecognized yet integral role of CRPs as part of a cancer CT care team.

Applying ideation-to-action theories to predict suicidal behavior among adolescents.

BACKGROUND: Although many risk factors for adolescent suicidal behavior have been identified, less is known about distinct risk factors associated with the progression from suicide ideation to attempts. Based on theories grounded in the ideation-to-action framework, we used structural equation modeling to examine risk and protective factors associated with the escalation from suicide ideation to attempts in adolescents. METHODS: In this cross-sectional study, data from the 2013 and 2015 Hawaii High School Youth Risk Behavior Surveys (N = 8,113) were analyzed. The sample was 54.0% female and racially/ethnically diverse. Risk factors included depression, victimization, self-harm, violent behavior, disinhibition, and hard substance use, and protective factors included adult support, sports participation, academic achievement and school safety. RESULTS: One in 6 adolescents (16.4%) reported suicide ideation, and nearly 1 in 10 (9.8%) adolescents had made a suicide attempt. Overall, disinhibition predicted the escalation to attempts among adolescents with suicide ideation, and higher academic performance was associated with lower suicide attempt risk. Depression and victimization were associated with suicide ideation. LIMITATIONS: This study examined data from the Youth Risk Behavior Survey, and other known risk factors such as anxiety and family history of suicide were not available in these data. CONCLUSIONS: Findings provide guidance for targets for clinical interventions focused on suicide prevention. Programs that incorporate behavioral disinhibition may have the greatest potential for reducing suicide attempt risk in adolescents with suicidal thoughts.

Perceptions of care coordination in cancer patient-family caregiver dyads.

PURPOSE: To examine cancer patients and their family caregivers' perspectives of care coordination (CC) using a dyadic research design. METHODS: In this pilot cross-sectional study, 54 patient-family caregiver dyads completed a validated care coordination instrument (CCI) and its parallel family caregiver instrument (CCICG) from June to September 2019. The sample available for analysis included data from 32 dyads, which included patients receiving active therapy for any cancer type and their primary family caregivers aged 18 years or older. Mixed regression models were used to examine dyadic differences. RESULTS: The overall family caregiver scores demonstrated a bimodal pattern; thus, we conducted analyses using aggregate data as well as by highCG and lowCG subgroups. Among dyads in the lowCG subgroup, family caregivers reported significantly lower scores than patients on the total CCI and the three CC domains: Communication, Navigation, and Operational. Caregiver gender, the absence of a patient navigator, and practice setting (hospital-based ambulatory) significantly predicted dyadic differences in the lowCG subgroup. In item-level analyses, family caregivers in the lowCG subgroup reported lower scores than patients on the items related to patient-physician communication. CONCLUSION: A subgroup of family caregivers reported poorer perception of CC than patients, suggesting that those family caregivers and providers may benefit from intervention. Further understanding of patient-family caregiver dyads' perspectives of CC can inform development of strategies to integrate family caregivers into the cancer care team, develop effective CC interventions for family caregivers, and contribute to improved quality and value of cancer care.

Assessing Patients' Perceptions of Cancer Care Coordination in a Community-Based Setting.

PURPOSE: Effective care coordination (CC) is a hallmark of a high-quality cancer care. However, efforts to improve cancer care delivery are limited by the lack of a clinically useful tool to assess CC. In this study, we examined patients' perceptions of cancer CC using a novel tool, the Care Coordination Instrument (CCI), and evaluated the quality of the CCI. METHODS: The CCI is a 29-item patient questionnaire that assesses CC across varied practice settings and patient populations overall and for three critical domains of CC: communication, navigation, and operational. We conducted univariable and multivariable regression analyses to identify patient clinical and practice characteristics associated with optimal versus suboptimal CC. RESULTS: Two hundred patients with cancer completed the CCI questionnaire between October 2018 and January 2019, of whom 189 were used for the analysis. The presence of a family caregiver and a diagnosis of a blood cancer were correlated with overall positive reports of CC (P < .001 and P < .05, respectively). Poorer perceptions of CC were associated with having a head and neck cancer and the absence of family caregiver support. The effects of cancer disease stage and having access to a patient navigator on CC were not statistically significant. CONCLUSION: Integrating a patient-centered tool to assess cancer CC can be a strategy to optimize cancer care delivery. Understanding factors associated with effective and ineffective CC can help inform efforts to improve overall quality of care and care delivery.

Development and psychometric evaluation of a questionnaire to measure cancer patients' perception of care coordination.

BACKGROUND: Although the importance of care coordination (CC) is well-recognized, cancer patients often receive poorly coordinated care across varied care settings and different oncology providers. Efforts to improve cancer care are hampered by lack of adequate measures. In this two-part, mixed-method study, we describe the development, refinement, and validation of a new care coordination instrument (CCI) designed to assess cancer patients' perception of CC. METHODS: In Study 1, an initial CCI was developed incorporating questions based on literature review. The items were then modified following four field tests conducted in a large academic hospital with oncology nurses (n = 20) and cancer patients (n = 120). This modified instrument was used to determine whether the CCI was able to distinguish CC between two practices (30 GI and 30 myeloma patients) within the same hospital setting. In Study 2, 68 patients receiving community-based care participated in seven focus groups. Based on these discussions, the CCI items were again refined, and psychometric evaluation was conducted to assess the quality of the instrument. RESULTS: Based on field tests, 3 domains of the CCI, Communication, Navigation, and Operational, were defined as critical components of CC. The Operational domain evaluates efficiency of care and is unique to this CCI. The field test demonstrated that GI patients reported significantly better CC Overall and for the Communication and Navigation domains (all p < .05). In Study 2, patients expressed concordance with the CCI items and their CC experiences, establishing validity of the CCI. Qualitative analysis of the focus group discussions indicated that the items with the highest frequencies of participants' comments were related to the concepts of Navigator, Team, Survey, and Communication. Quantitative analysis identified items with a limited response range or high rates of "neutral" responses; accordingly, those items were removed. The final CCI survey is a 29 item, multiple-choice questionnaire with excellent reliability, Cronbach's α = .922. CONCLUSIONS: We developed a novel, patient-centered tool with excellent psychometric properties that can be utilized across varied practice settings to assess patients' perception of cancer care coordination. TRIAL REGISTRATION: Not required; retrospectively registered ClinicalTrials.gov NCT03594006 20 July 2018.

Factor Analysis of Therapist-Identified Treatment Targets in Community-Based Children's Mental Health.

The present study used exploratory and confirmatory factor analyses to identify underlying latent factors affecting variation in community therapists' endorsement of treatment targets. As part of a statewide practice management program, therapist completed monthly reports of treatment targets (up to 10 per month) for a sample of youth (n = 790) receiving intensive in-home therapy. Nearly 75 % of youth were diagnosed with multiple co-occurring disorders. Five factors emerged: Disinhibition, Societal Rules Evasion, Social Engagement Deficits, Emotional Distress, and Management of Biodevelopmental Outcomes. Using logistic regression, primary diagnosis predicted therapist selection of Disinhibition and Emotional Distress targets. Client age predicted endorsement of Societal Rules Evasion targets. Practice-to-research implications are discussed.

Positive and Negative Affect in Clinic-Referred Youth With ADHD.

OBJECTIVE: To examine self-reported positive affect (PA) and negative affect (NA) among youth with ADHD (only and comorbid) and other non-ADHD-referred youth in an ethnically diverse clinical sample. METHOD: Semi-structured interviews identified 80 pure ADHD, 284 ADHD plus one or more comorbidities, and 730 non-ADHD youth (e.g., other diagnoses or no diagnosis). The Positive and Negative Affect Scale-Children (PANAS-C) was used to assess affective states. RESULTS: Even after controlling for the influence of potential confounds, youth with only ADHD reported higher PA and lower NA than other clinic-referred youth. The ADHD-comorbid group reported higher PA than the "non-ADHD" group, but these groups did not differ on level of NA. ADHD subtype did not influence results. CONCLUSION: Among clinic-referred youth, ADHD is associated with higher levels of PA and when there are no comorbid disorders, lower levels of NA.