Michelle Mollica

How Does Caregiver Well-Being Relate to Perceived Quality of Care in Patients With Cancer? Exploring Associations and Pathways

Purpose Perceived quality of care (QOC) is an increasingly important metric of care quality and can be affected by such factors among patients with cancer as quality of life and physician trust. This study sought to evaluate whether informal caregiver well-being was also associated with perceived QOC among patients with cancer and assessed potential pathways that link these factors. Methods This study used data from the Cancer Care Outcomes Research and Surveillance (CanCORS) consortium. Patients with lung and colorectal cancer enrolled in CanCORS (N = 689) nominated an informal caregiver to participate in a caregiving survey. Both groups self-reported sociodemographic, psychosocial, and caregiving characteristics; cancer characteristics were obtained from the CanCORS core data set. Multivariable logistic regression was used to assess the association between caregiver psychosocial factors and subsequent patient-perceived QOC, controlling for earlier patient-perceived QOC and covariates. Secondary analysis examined potential pathways that link these factors. Results Patients whose informal caregiver had higher levels of depressive symptoms were significantly more likely to report fair or poor QOC (odds ratio, 1.06; 95% CI, 1.01 to 1.13). When caregivers reported fair or poor self-rated health, patients were more than three times more likely to report fair or poor perceived QOC (odds ratio, 3.76; 95% CI, 1.76 to 9.55). Controlling for patient psychosocial factors and physician communication and coordination of medical care reduced the effect size and/or statistical significance of these relationships. Conclusion Informal caregivers are an important part of the care team and their well-being is associated with patient-perceived QOC. Engaging informal cancer caregivers as part of the care team and conducting ongoing risk stratification screening and intervention to optimize their health may improve patient-reported outcomes and QOC.

Communication and Exchange of Specialized Health-Related Support Among People With Experiential Similarity on Facebook

ABSTRACT Social support is an important factor that shapes how people cope with illness, and health-related communication among peers managing the same illness (network ties with experiential similarity) offers specialized information, resources, and emotional support. Facebook has become a ubiquitous part of many Americans’ lives, and may offer a way for patients and caregivers experiencing a similar illness to exchange specialized health-related support. However, little is known about the content of communication among people who have coped with the same illness on personal Facebook pages. We conducted a content analysis of 12 months of data from 18 publicly available Facebook pages hosted by parents of children with acute lymphoblastic leukemia, focusing on communication between users who self-identified as parents of pediatric cancer patients. Support exchanges between users with experiential similarity contained highly specialized health-related information, including information about health services use, symptom recognition, compliance, medication use, treatment protocols, and medical procedures. Parents also exchanged tailored emotional support through comparison, empathy, encouragement, and hope. Building upon previous research documenting that social media use can widen and diversify support networks, our findings show that cancer caregivers access specialized health-related informational and emotional support through communication with others who have experienced the same illness on personal Facebook pages. These findings have implications for health communication practice and offer evidence to tailor M-Health interventions that leverage existing social media platforms to enhance peer support for patients and caregivers.

The role of medical/nursing skills training in caregiver confidence and burden: A CanCORS study

Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assisting with activities of daily living, and offering social support. This study examined associations between the receipt of medical/nursing skills training and the caregiver burden as well as the mediation of caregiving confidence on this relationship in a sample of caregivers of lung and colorectal cancer patients.

Spirituality is associated with less treatment regret in men with localized prostate cancer

Some patients with prostate cancer regret their treatment choice. Treatment regret is associated with lower physical and mental quality of life. We investigated whether, in men with prostate cancer, spirituality is associated with lower decisional regret 6 months after treatment and whether this is, in part, because men with stronger spiritual beliefs experience lower decisional conflict when they are deciding how to treat their cancer.

Examining social media use among parents of children with cancer

Americans are increasingly using social media for health‐related communication. Facebook is the most widely used social media platform in the US. Much of the previous research on social media and health communication has focused on Facebook Groups related to a specific disease, or Facebook Pages related to an advocacy organization. However, less is known about how people communicate about health on personal Facebook Pages. In this study we expand upon previous research by examining the patterns of Facebook use among one unique population: parents caring for a child with cancer. We examined themes in cancer‐related exchanges through a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with Acute Lymphoblastic Leukemia (15,852 total posts). Four categories of health‐related Facebook usage emerged: documenting the cancer journey, (2) promoting awareness and advocacy about pediatric cancer, (3) sharing emotional strain associated with caregiving, and (4) mobilizing symbolic and instrumental forms of support. Our findings show that Facebook Pages offer a platform for people to share their cancer experiences, promote advocacy and awareness, and mobilize social support. Information professionals, particularly those who work with consumer and patient populations, should remain aware that social media platforms can provide layperson‐generated, user‐centered content that meets the informational, emotional, and logistical needs of caregivers and patients.

The role of medical social workers in cancer clinical trial teams: A group case study of multidisciplinary perspectives

ABSTRACT Introduction: Social workers collaborate with a wide range of healthcare providers in clinical trial teams, yet their roles may not always be understood or supported by team members. It is currently unknown how social workers and multidisciplinary team members perceive social workers’ roles in the clinical trial context. Methods: Using a group case-study approach, social workers, core medical team members, and allied healthcare workers (n = 19) completed in-depth interviews to discuss the roles of social workers in a cancer clinical trial setting. Findings: Social workers discussed their role as primarily patient-centered, perceiving themselves to be a counselor, patient advocate, and conduit. They also described areas of perceived limited role contribution. Other members of the multidisciplinary teams viewed the roles of social workers to be focused on being a conduit and coordinator. Discussion: We found discordance in the way that social workers and their team members view the roles of social workers in clinical trials. Our data suggest that structural and interpersonal barriers may prevent social workers from working to the full extent of their license in a clinical trial context. Implications, future research, and suggestions for interventions to more fully integrate social workers into clinical trial settings are discussed.

Examining urban and rural differences in perceived timeliness of care among cancer patients: A SEER-CAHPS study: Patient Experiences: Urban vs Rural

Rural cancer patients often have challenges in accessing quality care. This study examined associations between the place of residence at cancer diagnosis (urban vs rural) and patient ratings of access to care among older cancer survivors participating in Medicare‐managed care.

Cancer registry-survey data linkages to measure patient-centered quality of care: SEER-MHOS and SEER-CAHPS.

303 Background: Limited opportunities exist to conduct population-based surveillance of cancer patient-reported outcomes. Data from the National Cancer Institutes Surveillance Epidemiology and End Results (SEER) program has recently been linked with data from two Centers for Medicare & Medicaid Services quality improvement surveys: the Medicare Health Outcomes Survey (MHOS) and the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys. We provide an overview of the data available, recent findings, and priority areas for future research. METHODS Since 1998, the MHOS has conducted 2-wave/biennial surveys of individuals ages 65+ and individuals with disabilities enrolled in Medicare Advantage (MA) health plans on aspects of health-related quality of life, functional status, comorbidities, and symptoms. Fourteen cohorts are available, representing over 126K patients with cancer and over 1.9 million MA enrollees without a history of cancer. The SEER-MHOS publicly available data resource has produced over 40 data use agreements and 19 publications. SEER-CAHPS links cancer registry data with cross-sectional survey data of Medicare beneficiaries (both fee-for-service and MA) that contain information on patient experiences with care, including access to needed and timely care, doctor communication, health plan customer service, and care coordination. The current linkage contains survey data from 1998 to 2010 and includes over 150K and 570K respondents with and without a history of cancer, respectively. Plans to launch the publicly available resource are underway. RESULTS Recent findings include the impact of diagnosis and treatment on health-related quality of life in older cancer survivors, physical health impairments and variation of treatment received, the impact of cancer on activities of daily living, and variations in care ratings between participants with and without cancer across the cancer control continuum. CONCLUSIONS The SEER-MHOS and SEER-CAHPS linked data resources provide population-based surveillance data on cancer patient-reported outcomes which allow unprecedented opportunities to evaluate national quality improvement activities.