Operationalizing patient-centered cancer care: A systematic review and synthesis of the qualitative literature on cancer patients' needs, values, and preferences.

OBJECTIVE: Efficiently addressing patient priorities and concerns remains a challenge in oncology. Systematic operationalization of patient-centered care (PCC) can support improved assessment and practice of PCC in this unique care setting. This review aimed to synthesize the qualitative empirical literature exploring the National Academy of Medicine (NAM)'s PCC constructs of values, needs, and preferences among patients' during their cancer treatment experiences. METHODS: A systematic review of qualitative studies published between 2002 and 2018 addressing adult patient values, needs, and preferences during cancer treatment was conducted. Medline, EMBASE, PsycINFO, and SCOPUS databases were searched on September 10, 2018. Methodological rigor was assessed using a modified version of the Evaluation Tool for Qualitative Studies. Included study findings were analyzed using line-by-line coding; and the emergent themes were compared to the National Academy of Medicine (NAM)'s PCC dimensions. RESULTS: Twenty-nine primary studies were included in the synthesis. Descriptive themes for values (autonomy, being involved, family, hope, normality, and sincerity), needs (care coordination, information, privacy, support of physical well-being, emotional support (family/friends, peer, provider), and self-support), and preferences (care coordination, decision-making, information delivery, source of social support, and treatment) were identified. "Cancer care context" emerged as an important domain in which these constructs are operationalized. This thematic framework outlines PCC attributes that oncology care stakeholders can evaluate to improve patient experiences. CONCLUSIONS: These findings build on previous PCC research and may contribute to the systematic assessment of patient priorities and the improvement of oncology care quality from the patient perspective.

Exploratory Factor Analysis of a Patient-Centered Cancer Care Measure to Support Improved Assessment of Patients' Experiences.

OBJECTIVE: To increase the understanding of patient-centered care (PCC) and address the need for cross-cutting quality cancer care measures that are relevant to both patients and providers. METHODS: An exploratory factor analysis (EFA) was performed on a short version of the Patients and the Cancer Care Experience Survey, a patient-reported measure of perceived importance of social, emotional, physical, and informational aspects of care, administered to adult patients (n = 104) at a National Cancer Institute-designated comprehensive cancer center. Relationships between PCC dimensions and patient characteristics were also assessed. Principal axis factoring was applied and bivariate analyses were performed using Wilcoxon rank-sum tests. RESULTS: Most of our sample was over 60 years old (63.4%), female (57.4%), and white (74.2%), with either breast (41.2%) or prostate cancer (27.5%). A 5-factor model was identified: (1) quality of life (α = .91), (2) provider social support (α = .83), (3) psychosocial needs (α = .91), (4) nonprovider social support (α = .79), and (5) health information and decision-making support (α = .88). No statistically significant associations were found between these factors and patients' characteristics. CONCLUSIONS: A preliminary factor structure for a cancer PCC measure was identified. Our findings reinforce the interrelated nature of PCC dimensions. The lessons learned from this study may be used to develop a single PCC measure that identifies patient priorities across the cancer care continuum. Data collected from such a measure can be used to support patient engagement in treatment planning and decision-making.

Adjuvant chemotherapy non-adherence, patient-centered communication, and patient-level factors in elderly breast and colon cancer patients.

BACKGROUND: We examined patient-level factors (patient characteristics, disease and treatment factors, and patient experience), patient-centered communication (PCCM), and non-adherence to adjuvant chemotherapy (AC) guidelines among breast and colon cancer patients to inform AC adherence promotion and improve clinical outcomes. METHODS: Descriptive statistics for patient-level factors, PCCM, and AC non-adherence (primary non-adherence, non-persistence at 3 and 6 months) were obtained. Multiple logistic regression models were used to estimate AC non-adherence after accounting for the identified patient-level factors. RESULTS: The majority of the sample (n = 577) were White (87%), breast cancer patients (87%), and reported PCCM (provider communication score ≥ 90%, 73%, provider communication score = 100%, 58%). All three levels of AC nonadherence were significantly higher in breast cancer patients (69%, 81%, and 89% for primary non-adherence, and non-persistence at 3 and 6 months, respectively) than colon cancer patients (43%, 46%, and 62%, respectively). Male sex, survey assistance, and low/average ratings of a personal doctor, specialist, and healthcare were associated with lower PCCM. Older age, breast cancer diagnosis, and diagnosis group following 2007-2009 increased the likelihood of all three levels of AC non-adherence. Comorbidities and PCCM-90 were exclusively associated with non-persistence at 3 months. CONCLUSIONS: Adjuvant chemotherapy non-adherence varied by cancer diagnosis and treatment factors. The relationship between PCCM and AC non-adherence differed by level of PCCM, time period, and the presence of comorbidities. AC guideline adherence, communication, and value-concordant treatment should be assessed and compared simultaneously to improve our understanding of their interrelationships.

Understanding racial-ethnic differences in patient-centered care (PCC) in oncology through a critical race theory lens: A qualitative comparison of PCC among Black, Hispanic, and White cancer patients.

OBJECTIVES: Patient-centered care (PCC) experiences can vary by race and ethnicity and likely contribute to cancer care disparities. We compared PCC concepts between Non-Hispanic White (White), Hispanic, and Non-Hispanic Black (Black) cancer patients utilizing Critical Race Theory (CRT) to understand the relationships between racial-ethnic identity and PCC. METHODS: A thematic analysis and in-depth CRT-informed analysis of individual interviews exploring patient values, unmet needs, preferences, and priorities were performed. RESULTS: Participants were aged> 25 yrs old, 53% male, and included 5 Hispanic, 4 Black and 6 White cancer patients. Unmet needs for time to make decisions, and provider interaction between visits and the value for finding meaning in the illness emerged among Blacks and Whites. The unmet need for a long-term treatment plan emerged among Blacks, and the preference of research participation among Whites. A value for optimism was observed among Hispanics and Whites. Racial-ethnic variations in patient descriptions and experiences of their values, unmet needs, preferences, and priorities were identified. CONCLUSIONS: Underrepresented groups face subtle but significant challenges in feeling cared for and understood, voicing concerns, and obtaining quality care. PRACTICE IMPLICATIONS: Increased mutual understanding and provider knowledge of unique PCC experiences among underrepresented cancer patients are needed.