Griffin, Joan M.

Abstract To date, nearly 40 U.S. states have passed the Caregiver Advise Record and Enable (CARE) Act to support family caregivers during transitions from hospital to home. These laws require hospitals to: 1) record designated family caregivers’ name in a patient medical records during a hospital stay; 2) inform the caregiver when the patient will be discharged; 3) provide education and instructions on care tasks needed for post-hospital discharge. Transitions from hospital to home are often fraught with adverse event risk and poor continuity of care, especially for rural patients with progressive life-limiting conditions. The CARE ACT has potential to address healthcare system factors that are sometimes attributable to poor transitions in care. Our presentation focuses on preliminary findings from an intervention that provides teaching, guidance, and counseling to caregivers caring for an individual receiving palliative care in the hospital and transitioning home to a rural setting. Findings suggest that the CARE ACT may be vital, but not fully sufficient, for successful transitions. Additional targets for caregiver interventions to improve transitions for this subset of very ill patients include: 1) attend to caregivers’ medical and non-medical needs which may impact their capacity to provide care; 2) advise clinical teams to communicate truthfully about prognosis and likely outcomes when creating post-hospital plans of care; 3) encourage caregivers to identify and engage services early in the transition; 4) urge caregivers to draw on multiple sources for social support. Findings can help optimize the CARE Act implementation, particularly in states with large rural populations.

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer’s disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers ( n = 42), three included non-spousal caregivers ( n = 36), and one included people with MCI ( n = 15). Seven potential best practices were identified, including the following: “acknowledge caregivers’ role and assess unmet needs and capacity to care” and “communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers.” Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

PURPOSE: We aimed to better understand how similarly patients with colorectal cancer and caregivers view care quality and to assess factors that may influence concordance. MATERIALS AND METHODS: We conducted a secondary analysis of paired patient and caregiver quality ratings of colorectal cancer care in three specific domains: surgery, chemotherapy overall, and chemotherapy nursing. Agreement was assessed with difference scores, concordance with Gwet second-order agreement statistics (AC2), and variation in agreement with stratified analyses. We examined whether the care experiences of patients and caregivers were associated with top-box (most-positive) ratings and examined variations in concordance on the basis of the presence of a top-box score. RESULTS: Four hundred seventeen patient-caregiver dyads completed the surveys. Quality-of-care ratings were positively skewed, with most dyads indicating top-box ratings. Patient and caregiver care experiences were highly associated with top-box ratings. Overall patient-caregiver concordance was very high for all three care domains (surgery: AC2, 0.87 [95% CI, 0.83 to 0.90]; chemotherapy overall: AC2, 0.84 [95% CI, 0.79 to 0.88]; chemotherapy nursing: AC2, 0.91 [95% CI, 0.87 to 0.94]). Stratified analyses of patient and caregiver characteristics did not identify any patterns that consistently affected concordance. The concordance statistic significantly decreased for all three outcomes ( P < .001), however, when the patient or caregiver assessed quality as anything other than top box. CONCLUSION: Caregiver and patient reports on care quality were highly concordant for top-box care and did not vary with patient or caregiver factors. Additional exploration is needed to identify reasons for increased variability when the quality scores were less than a top-box response.

Abstract Background A better understanding of social determinants of health and psychosocial and economic sequelae of cancer for an ethnoculturally diverse population is needed. A Patient-Reported Outcomes Quality of Life (PROQOL) instrument has been developed to capture less commonly discussed patient concerns. We sought to adapt this instrument and pilot it in underserved, ethnic minority cancer patients at Maricopa Integrated Health System (MIHS) in Phoenix, AZ. Methods Two focus groups (FG) were conducted to understand patient perspectives of an adapted Spanish version of PROQOL. A revised version based on FG data was then piloted among patients on active cancer treatment. Patients also completed a Linear Analog Scale Assessment (from 1-10) for quality of life (QOL) and its domains. Results All participants in both FG (11/12 female) were Hispanic, with a median age of 53 years. Participants agreed that the domains covered in the PROQOL represented the most important psychosocial needs in their cancer continuum. No difficulty in understanding the individual domains or questions for delving deeper into each domain was noted. Median age of 34 pilot study participants (74% female, 79% Hispanic) was 48 years. 28/34 completed the Spanish version. The most common concerns were ‘Money’ (32%) and ‘Cancer Diagnosis, Treatment and Survivorship’ (32%). Median overall QOL was 8 (range 3-10). Conclusions PROQOL is feasible for systematic capture of patient concerns in underserved, ethnic minority cancer patients. A better understanding of these concerns can help design interventions to improve psychosocial outcomes for the vulnerable groups and decrease disparities in care delivery.

6594 Background: Given the significant short-term adverse effects of CAR-T cell therapy, it is important to evaluate its impact on QOL of patients in addition to efficacy, compared with established forms of cellular therapy like SCT. Methods: QOL was evaluated prospectively in patients undergoing CAR-T therapy, autoSCT & alloSCT for hematologic malignancies. QOL was assessed with FACT-G at baseline, 2 weeks and monthly for 6 months thereafter. Functional well-being (FWB), physical WB (PWB) emotional WB (EWB) & social WB (SWB) and change over time were compared across groups. Results: 45 patients were recruited (CAR-T: 10; Auto SCT: 22; Allo SCT: 13) with follow up for 2 weeks & 1 month available for 23 &15 patients, respectively (Table). There was no statistically significant difference in baseline total QOL scores (p=0.13), though scores were lower in the alloSCT group (85,84,68). EWB &FWB were numerically higher in the CAR-T group, followed by autoSCT group. At 2 weeks, overall QOL decreased by only 2 points in CAR-T group vs. 22 & 18 points in auto & alloSCT groups (p=0.09). Change in PWB vs. baseline was less pronounced in the CAR-T group (-1, -9, -13, p=0.03). At 1 month, overall QOL was 6 points lower than baseline in CAR-T group vs. 3 and 14 points lower in auto & alloSCT groups, respectively (p=0.34). Importantly, PWB had at least returned to baseline in the CAR-T group. Conclusions: Preliminary data show that patients undergoing CAR-T cell therapy do not experience a more significant decline in QOL compared with auto & allo SCT, and may experience fewer physical side effects in the short-term. Accrual & follow-up are ongoing. [Table: see text]

Objective There exists a paucity of work in the development and testing of theoretical models specific to childhood health disparities even though they have been linked to the prevalence of adult health disparities including high rates of chronic disease. We conducted a systematic review and thematic analysis of existing models of health disparities specific to children to inform development of a unified conceptual framework. Methods We systematically reviewed articles reporting theoretical or explanatory models of disparities on a range of outcomes related to child health. We searched Ovid Medline In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid Embase, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus (database inception to 9 July 2015). A metanarrative approach guided the analysis process. Results A total of 48 studies presenting 48 models were included. This systematic review found multiple models but no consensus on one approach. However, we did discover a fair amount of overlap, such that the 48 models reviewed converged into the unified conceptual framework. The majority of models included factors in three domains: individual characteristics and behaviours (88%), healthcare providers and systems (63%), and environment/community (56%), . Only 38% of models included factors in the health and public policies domain. Conclusions A disease-agnostic unified conceptual framework may inform integration of existing knowledge of child health disparities and guide future research. This multilevel framework can focus attention among clinical, basic and social science research on the relationships between policy, social factors, health systems and the physical environment that impact children's health outcomes.

Abstract Background The majority of aging adults with heart failure (HF) receive support from a family caregiver. Most literature has emphasized the stressors and burden of caregiving, with less focus on positive self-gains associated with caregiving. Methods and Results Using an explanatory sequential design, we assessed self-gain by administering a survey to caregivers of a person with HF (n = 108) and then conducted qualitative semi-structured interviews with a subset (n = 16) of these caregivers. Quantitative results indicate spousal caregivers, and caregivers with higher preparedness and higher mastery had greater odds of reporting high self-gain. Content analysis of qualitative data revealed 3 themes of self-gain including (i) caregiving as a means to enhancing relationships, (ii) success in negotiating care and healthy behaviors with people with HF, and (iii) caregiving as a means of preparing caregivers for the future. Conclusions HF caregivers experience a range of positive self-gains and the ability to find meaning in the stressful caregiving role. Caregivers’ ability to garner intrinsic gains from their role can have important benefits well after caregiving has ended.

65 Background: We need better methods to understand the social determinants of health and integrate psychosocial and economic sequelae of cancer and its treatment into healthcare delivery for ethnoculturally diverse population. A Patient-Reported Outcomes Quality of Life (PROQOL) instrument has been developed to capture less commonly discussed patient concerns (Personal Relationships, Emotional health, Physical health, Cancer diagnosis and treatment, Money and Care planning) and improve patient-provider communication. We sought to adapt this instrument and pilot it in underserved, ethnically diverse solid tumor and hematological malignancies patients at Maricopa Integrated Health System (MIHS) in Phoenix, AZ. Methods: Two focus groups (FG) were conducted to understand patient perspectives of an adapted Spanish version of PROQOL. This version was then piloted among patients on active cancer treatment. Patients also completed a Linear Analog Scale Assessment (from 1-10) for quality of life (QOL) and its domains (higher scores indicate better QOL). Results: All participants in both FG (11/12 female) were Hispanics, with a median age of 53 years. Participants agreed that the domains covered in the PROQOL represented the most important psychosocial needs in their cancer continuum. No difficulty in understanding the individual domains or questions for delving deeper into each domain was noted. Median age of 34 pilot study participants (74% female) was 48 years, 79% were Hispanic, 10% were African Americans and median household income was $ 43,924 (range 23,002-98,382). 28/34 completed the Spanish version. Most common concerns were ‘Money’ (32%): difficulty paying medical bills and non-medical expenses and ‘Cancer Diagnosis, Treatment and Survivorship’ (32%): type of cancer and treatment concerns. Median overall QOL was 8 (range 3-10). Conclusions: PROQOL is feasible for systematic capture of patient concerns in underserved, ethnic minority cancer patients. A better understanding of these challenges can help design interventions to improve psychosocial and financial outcomes for the vulnerable groups and decrease disparities in care delivery.

AbstractBackgroundDespite the importance of home enteral nutrition (HEN), there is a lack of understanding within the medical and general community of how HEN impacts the lives of patients and caregivers. Using a theoretical orientation that attends to the materiality of both everyday and medical objects, we explored patients' and family caregivers' everyday experiences of administering feeds during HEN.MethodsUsing the photo‐elicitation interviewing method, patients on HEN and their family caregivers were asked to take up to 10 photographs to portray material items and activities that they considered foundational to HEN. They subsequently narrated their experiences and the participant‐generated photographs in an interview. Participant‐generated photographs (126) and accompanying narratives were analyzed using layered analysis, and results were theorized with attention to both social and material significance of HEN.ResultsPatients and caregivers detailed overcoming misconceptions of HEN, and through their use of photographs, they conveyed their expertise in developing their own HEN feeding systems and practices, that used both the material artifacts provided by the hospital (the tube, syringe, and formula) as well as everyday material items found in the patient's home. More than this, photographs and patient narratives depicted intimate involvement of patients' families in tube feeding. This yielded a more comprehensive understanding of the material and experiential realities of HEN.ConclusionHome enteral nutrition was found to be a shared familial experience, that in addition to requiring medical equipment also incorporated ordinary material artifacts within the social setting of the home and family life. To more accurately convey the material, experiential, and social realities of HEN to future patients, our findings underscore the importance of drawing on both visual and textual forms of patient‐produced information in the development of HEN patient educational materials.