Perceptions of Survivorship Care among Latina Women with Breast Cancer in Los Angeles County.

OBJECTIVES: Cancer "survivorship" is a distinct and important aspect of the cancer experience. More research is needed about survivorship care in underserved populations such as Latinas. This study examined issues of breast cancer survivorship care among Latinas to understand their experiences and needs, to inform the design of future programs. DESIGN AND SAMPLE: Six English- and six Spanish-language focus groups were conducted, with a nonprobability sample. About 74 Latinas who varied in terms of characteristics including stage, time since diagnosis, and English proficiency were recruited through support groups, health fairs, and promotoras. MEASURES: A semi-structured question guide was used to examine experiences with follow-up care, barriers, and meaning associated with breast cancer survivorship. RESULTS: Results indicate numerous gaps and unmet needs in Latinas' survivorship care experiences, including problems with finances, continuity of care, unmet needs for information, and symptom management. Participants identified sources of support including patient navigators, and assigned both positive and negative meanings to survivorship. CONCLUSIONS: This research lays a foundation for future work to develop interventions addressing Latina breast cancer survivors' unmet needs. Recommendations include enhancing peer and professional support services for patients, family, and caregivers. Further work is also needed to promote the implementation of survivorship care plans.

Association of Early Patient-Physician Care Planning Discussions and End-of-Life Care Intensity in Advanced Cancer.

BACKGROUND: Early patient-physician care planning discussions may influence the intensity of end-of-life (EOL) care received by veterans with advanced cancer. OBJECTIVE: The study objective was to evaluate the association between medical record documentation of patient-physician care planning discussions and intensity of EOL care among veterans with advanced cancer. METHODS: This was a retrospective cohort study. Subjects were 665 veteran decedents diagnosed with stage IV colorectal, lung, or pancreatic cancer in 2008, and followed till death or the end of the study period in 2011. We estimated the effect of patient-physician care planning discussions documented within one month of metastatic diagnosis on the intensity of EOL care measured by receipt of acute care, intensive interventions, chemotherapy, and hospice care, using multivariate logistic regression models. RESULTS: Veterans in our study were predominantly male (97.1%), white (74.7%), with an average age at diagnosis of 66.4 years. Approximately 31% received some acute care, 9.3% received some intensive intervention, and 6.5% had a new chemotherapy regimen initiated in the last month of life. Approximately 41% of decedents received no hospice or were admitted within three days of death. Almost half (46.8%) had documentation of a care planning discussion within the first month after diagnosis and those who did were significantly less likely to receive acute care at EOL (OR: 0.67; p=0.025). Documented discussions were not significantly associated with intensive interventions, chemotherapy, or hospice care. CONCLUSION: Early care planning discussions are associated with lower rates of acute care use at the EOL in a system with already low rates of intensive EOL care.

Patient perceptions regarding the likelihood of cure after surgical resection of lung and colorectal cancer.

BACKGROUND: The objective of the current study was to characterize the prevalence of the expectation that surgical resection of lung or colorectal cancer might be curative. The authors sought to assess patient-level, tumor-level, and communication-level factors associated with the perception of cure. METHODS: Between 2003 and 2005, a total of 3954 patients who underwent cancer-directed surgery for lung (30.3%) or colorectal (69.7%) cancer were identified from a population-based and health system-based survey of participants from multiple US regions. RESULTS: Approximately 80.0% of patients with lung cancer and 89.7% of those with colorectal cancer responded that surgery would cure their cancer. Even 57.4% and 79.8% of patients with stage IV lung and colorectal cancer, respectively, believed surgery was likely to be curative. On multivariable analyses, the odds ratio (OR) of the perception of curative intent was found to be higher among patients with colorectal versus lung cancer (OR, 2.27). Patients who were female, with an advanced tumor stage, unmarried, and having a higher number of comorbidities were less likely to believe that surgery would cure their cancer; educational level, physical function, and insurance status were not found to be associated with perception of cure. Patients who reported optimal physician communication scores (reference score, 0-80; score of 80-100 [OR, 1.40] and score of 100 [OR, 1.89]) and a shared role in decision-making with their physician (OR, 1.16) or family (OR, 1.17) had a higher odds of perceiving surgery would be curative, whereas patients who reported physician-controlled (OR, 0.56) or family-controlled (OR, 0.72) decision-making were less likely to believe surgery would provide a cure. CONCLUSIONS: Greater focus on patient-physician engagement, communication, and barriers to discussing goals of care with patients who are diagnosed with cancer is needed.

Developing and testing a decision aid for use by providers in making recommendations: about mammography screening in older women.

Breast cancer incidence increases with age, but many older women do not receive appropriate mammography screening. A tool to support provider decision making holds potential to help providers and patients reach the best-informed decisions possible. We developed and tested a decision aid (DA) for healthcare providers to use in mammography screening recommendations in older women. Literature review, expert opinion, focus groups, and pilot testing of the DA were conducted in a university ambulatory geriatrics practice. Provider evaluations of the DA after piloting were collected and analyzed. Geriatricians reported important factors in decision making included patient life-expectancy, preferences, cognitive function, and individualization. Geriatricians reported the DA would have helped them make recommendations for mammography screening in 66% of pilot cases. It was less helpful when there was more certainty regarding decision making.

Physician-reported barriers to referring cancer patients to specialists: prevalence, factors, and association with career satisfaction.

BACKGROUND: Quality care for patients with cancer often requires access to specialty providers, but little is known about barriers to referring cancer patients for specialized care. Referral barriers may also lessen physician career satisfaction. The study was aimed at determining what factors are associated with these barriers and whether greater barriers are associated with low career satisfaction. METHODS: This cross-sectional study examined 1562 primary care physicians (PCPs) and 2144 specialists responding to the multiregional Cancer Care Outcomes Research and Surveillance Consortium physician survey. The prevalence of physician-reported barriers to referring cancer patients for more specialized care (restricted provider networks, preauthorization requirements, patient inability to pay, lack of surgical subspecialists, and excessive patient travel time) was assessed. The 5 items were averaged to calculate a barrier score. A multivariate linear regression was used to determine physician and practice setting characteristics associated with the barrier score, and a multivariate logistic regression was used to analyze the association of the barrier score with physician career satisfaction. RESULTS: Three in 5 physicians reported always, usually, or sometimes encountering any barrier to cancer patient specialty referrals. In adjusted analyses of PCPs and specialists, international medical graduates, physicians practicing in solo or government-owned practices, and physicians with <90% of their patients in managed care plans had higher barrier scores than others (P < .05). High barrier scores were associated with lower physician career satisfaction among PCPs and specialists (P < .05). CONCLUSIONS: Many physicians experience barriers to specialty referral for cancer patients. Uniform systems for providing and tracking timely referrals may enhance care and promote physician career satisfaction.

Evaluating the quality of supportive oncology using patient-reported data.

PURPOSE: Patient-reported data may provide valuable information for oncology quality measurement. We evaluated applying patient-reported data from the Cancer Care Outcomes Research and Surveillance Consortium national study to quality indicators addressing supportive oncology domains. METHODS: We analyzed surveys including validated instruments for symptoms and care planning from 4,174 patients newly diagnosed with lung or colorectal cancer. We adapted existing supportive oncology indicators for use with patient-reported data from Cancer Quality-ASSIST and the American Society of Clinical Oncology Quality Oncology Practice Initiative. Where feasible, we examined indicators using medical record data for comparison purposes. RESULTS: Using patient-reported data, the percentage of patients meeting indicator criteria for screening ranged from 74% (significant depressive symptoms) to 93% (pain, nausea/vomiting). The percentage meeting indicator criteria for symptom treatment ranged from 73% (significant depressive symptoms) to 99% (nausea/vomiting). Symptom severity did not affect the results. Using medical record data, the percentage meeting indicator criteria varied between 4% (significant depressive symptoms) and 23% (pain). For information and care planning, 44% met criteria for discussion about resuscitation and 32% for hospice discussion using survey data. Using medical record data, 11% met criteria for goals-of-care discussion in intensive care and 46% for hospice/pain management/palliative care referral before death. CONCLUSION: Quality of care for symptoms measured using patient self-report was higher than when including medical record data. Use of patient-reported and medical record data allowed measurement of different perspectives on care planning indicators. Patient-reported data provide a complementary, patient-centered perspective on the quality of supportive oncology care.

Prevalence, predictors, and patient outcomes associated with physician co-management: findings from the Los Angeles Women's Health Study.

BACKGROUND: Physician co-management, representing joint participation in the planning, decision-making, and delivery of care, is often cited in association with coordination of care. Yet little is known about how physicians manage tasks and how their management style impacts patient outcomes. OBJECTIVES: To describe physician practice style using breast cancer as a model. We characterize correlates and predictors of physician practice style for 10 clinical tasks, and then test for associations between physician practice style and patient ratings of care. METHODS: We queried 347 breast cancer physicians identified by a population-based cohort of women with incident breast cancer regarding care using a clinical vignette about a hypothetical 65-year-old diabetic woman with incident breast cancer. To test the association between physician practice style and patient outcomes, we linked medical oncologists' responses to patient ratings of care (physician n=111; patient n=411). RESULTS: After adjusting for physician and practice setting characteristics, physician practice style varied by physician specialty, practice setting, financial incentives, and barriers to referrals. Patients with medical oncologists who co-managed tasks had higher patient ratings of care. CONCLUSION: Physician practice style for breast cancer is influenced by provider and practice setting characteristics, and it is an important predictor of patient ratings. We identify physician and practice setting factors associated with physician practice style and found associations between physician co-management and patient outcomes (e.g., patient ratings of care).

Physician and Practice Characteristics Influencing Tumor Board Attendance: Results From the Provider Survey of the Los Angeles Women's Health Study.

BACKGROUND: Coordination of care has grown in importance with the advent of new modalities of treatment that require specialized expertise. In cancer care, multidisciplinary approaches have shown improvements in quality of care. Tumor boards may provide a mechanism for improving coordination of care. We evaluated physician and practice characteristics that predict frequency of tumor board attendance. MATERIALS AND METHODS: This cross-sectional study used data obtained by surveying physicians of a population-based sample of women with incident breast cancer. Physicians were queried regarding tumor board attendance, specialty [medical oncologist (MO), radiation oncologist (RO), surgeon at a hospital with American College of Surgeons accreditation (ACOSSg) and surgeon without such affiliation (non-ACOSSg)], physician characteristics (gender, race/ethnicity, teaching involvement, patient volume, ownership interest) and practice setting (type, size, reimbursement method). Univariate, bivariate, and multivariate analyses were performed for the dependent variable characterizing provider report of frequency of tumor board attendance. RESULTS: Most surveyed physicians (83%) report attending tumor board weekly (58%) or monthly (25%). Specialty and higher patient volumes are significant predictors of more frequent attendance. Compared with the most prevalent specialty category (low-volume ACOSSgs), high-volume MOs attend more frequently (P = .01) and low volume non-ACOSSgs attend less frequently (P = .00). CONCLUSIONS: Tumor board provides a structure for engaging providers in discussion of cancer cases that is designed to enhance quality of care. Tumor board agendas and formalized institution-wide policies could be designed to engage low-frequency attendees as a means to improve quality measures, promote multidisciplinary care, and potentially improve health outcomes.

Use of interpreters by physicians treating limited English proficient women with breast cancer: results from the provider survey of the Los Angeles Women's Health Study.

OBJECTIVE: Little is known about how cancer physicians communicate with limited English proficient (LEP) patients. We studied physician-reported use and availability of interpreters. DATA SOURCES: A 2004 survey was fielded among physicians identified by a population-based sample of breast cancer patients. Three hundred and forty-eight physicians completed mailed surveys (response rate: 77 percent) regarding the structure and organization of care. STUDY DESIGN AND SETTINGS: We used logistic regression to analyze use and availability of interpreters. PRINCIPAL FINDINGS: Most physicians reported treating LEP patients. Among physicians using interpreters within the last 12 months, 42 percent reported using trained medical interpreters, 21 percent telephone interpreter services, and 75 percent reported using untrained interpreters to communicate with LEP patients. Only one-third of physicians reported good availability of trained medical interpreters or telephone interpreter services when needed. Compared with HMO physicians, physicians in solo practice and single-specialty medical groups were less likely to report using trained medical interpreters or telephone interpreter services, and they were less likely to report good availability of these services. CONCLUSIONS: There were important practice setting differences predicting use and availability of trained medical interpreters and telephone interpretation services. These findings may have troubling implications for effective physician-patient communication critically needed during cancer treatment.

Assessing the Effectiveness of Breast Cancer Education Workshops among Samoan and Pacific Islander Women in Southern California.

BACKGROUND: Samoans experience among the worst five-year breast cancer survival rates in the U.S., largely due to late stage diagnosis. There is great potential for screening interventions to reduce cancer mortality among Samoans. This paper examines the effectiveness of a culturally and linguistically tailored breast cancer education workshop for Samoan and other Pacific Islander women in Southern California. METHODS: Educational workshops were conducted in churches, homes, and the Samoan National Nurses Association office to Pacific Islander women. Effectiveness was assessed using pre- and post-tests. Self-administered questionnaires queried participants about demographics, access, personal or family breast cancer history, screening knowledge and behaviors, and plans to obtain screening (n=495). RESULTS: Participants were predominantly Samoan, with 57% reporting they were ≥40 years of age. At pre-test, half of the participants did not know how to perform Breast Self Examination (BSE), 40% never had a Clinical Breast Examination (CBE), and 30% never had a mammogram. Less than 40% reported having a mammogram in the past two years. At post-test, 98% reported increased knowledge. Older women were more likely to report plans for screening at post-test. CONCLUSIONS: Health educators in Samoan and other Pacific Islander communities must recognize and appropriately address screening barriers such as cultural beliefs and lack of knowledge, and should consider working with important institutions such as the church.

Development of the Tongan American Health Professionals Association: Sharing, Mentoring and Networking for Community Health.

INTRODUCTION: Tongan-Americans face severe disparities in health including diabetes, cardiovascular disease, and cancer. Educational disparities also affect health opportunities and well-being, influencing health status and community capacity to address disparities. Few resources have been identified within the Tongan-American community to address these concerns. The Tongan American Health Professionals Association (TAHPA) was conceived to identify and develop health and health career resources for the Tongan community. Through TAHPA, the Tongan-American community is utilizing a community-empowerment approach to address disparities and well-being. METHODS: TAHPA was formed in 2008 through the leadership of individuals with a vision of a healthier Tongan-American community. TAHPA's purpose was to inspire and empower the Tongan-American community by developing an organization of Tongan-American health care professionals and pre-professionals, celebrating their accomplishments, and providing resources and support for educational and career development. Founders gathered in small work groups in community settings to discuss health concerns, well-being and solutions. Key community members facilitated the process to establish goals and objectives. NEXT STEPS: To date, 40 Tongan health professionals and pre-professionals have become members. TAHPA's vision and outreach processes have been developed. TAHPA's uniqueness and strength is that it is rooted in the community, created by the community to serve the community.

A Case Study in Chamorro Community and Academic Engagement for a Community-Partnered Research Approach.

OBJECTIVE: We describe the development of a community and academic research partnership, share reflections on processes for collaborations, and identify key factors for establishing strong and effective relationships to foster high-quality research. BACKGROUND: A community-based participatory research (CBPR) effort evaluating a community-based patient navigation program assisting Chamorro women to access breast cancer services in Southern California served as the foundation for the development of the community-academic partnership. METHODS: Using a CBPR approach focusing on active involvement of community members, organizational representatives, and academic researchers in all aspects of research process, faculty from a research university and a local community-based organization were brought together to build a partnership. Community and academic partners engaged in a series of meetings where dialogue focused on developing and nurturing trust and shared values, respect for community knowledge, and establishing community-defined and prioritized needs and goals. Partners have also focused on defining and developing explicit structures and policies to implement an equal partnership. RESULTS: Experiences and lessons learned are shared, reflecting the processes of relationship building, and planning and implementing preliminary research steps. LESSONS LEARNED: Adequate time for relationship-building, open and honest communication, flexibility, and ongoing examination of assumptions are keys to developing successful CBPR partnerships.

The structural landscape of the health care system for breast cancer care: results from the Los Angeles Women's Health Study.

The structure of health care has been rapidly evolving in response to financial pressures and demands to improve quality. Little work has documented the structure of care and its impact in the context of breast cancer care. We conducted a survey to characterize Los Angeles physicians caring for breast cancer patients and the structural landscape of the healthcare system in which they practice. Cross-sectional survey of physicians who treated a population-based cohort of breast cancer patients. We surveyed 477 physicians, targeting all Los Angeles County medical oncologists, radiation oncologists, and surgeons reported by patients participating in the Los Angeles Women's Health Study (77% response rate). Specialty-specific questionnaires were developed. Items were based on the structure and quality of care literature, cognitive interviews with cancer care specialists, and existing physician survey instruments. Breast cancer care providers in Los Angeles are diverse, with one-third non-white and 46% speaking a non-English language. Group practice is most common, (37% single specialty, 16% group-model HMO, 8% multi-specialty group). Minimal teaching involvement predominates. Mean new breast cancer patient volumes are relatively high (8 per month overall; six for surgeons), representing 46% of new cancer patients. Physicians reported high career satisfaction levels (83-92%). Physicians were least satisfied with the amount of time spent with patients (82%). Data from this study represent important building blocks for further analyses to determine the impact of structural characteristics on the quality of care that breast cancer patient's experience.

Financial incentives for quality in breast cancer care.

OBJECTIVES: To examine the use of financial incentives related to performance on quality measures reported by oncologists and surgeons associated with a population-based cohort of patients with breast cancer in Los Angeles County, California, and to explore the physician and practice characteristics associated with the use of these incentives among breast cancer care providers. STUDY DESIGN: Cross-sectional observational study. METHODS: Physician self-reported financial arrangements from a survey of 348 medical oncologists, radiation oncologists, and surgeons caring for patients with breast cancer in Los Angeles County (response rate, 76%). Physicians were asked whether they were subject to financial incentives for quality (ie, patient satisfaction surveys and adherence to practice guidelines). We examined the prevalence and correlates of incentives and performed multivariate logistic regression analyses to assess predictors of incentives, controlling for other covariates. RESULTS: Twenty percent of respondents reported incentives based on patient satisfaction, and 15% reported incentives based on guideline adherence. The use of incentives for quality in this cohort of oncologists and surgeons was modest and was primarily associated with staff- or group-model health maintenance organization (HMO) settings. In other settings, important predictors were partial physician ownership interest, large practice size, and capitation. CONCLUSIONS: Most cancer care providers in Los Angeles County outside of staff- or group-model HMOs are not subject to explicit financial incentives based on quality-of-care measures. Those who are, seem more likely to be associated with large practice settings. New approaches are needed to direct financial incentives for quality toward specialists outside of staff- or group-model HMOs if pay-for-performance programs are to succeed in influencing care.

Symptom management after breast cancer treatment: is it influenced by patient characteristics?

PURPOSE: With improved patient survival from breast cancer, more interest has evolved regarding the symptoms women experience in association with breast cancer treatments. We studied the extent to which symptoms for women with incident breast cancer are addressed by their physicians and how symptom management varies with patient characteristics. METHODS: As part of the Los Angeles Women's (LAW) Study, we categorized women from a population-based study of incident breast cancer (n = 1,219) as having an unmet need if she had at least one severe symptom (any of the following: nausea/vomiting, arm problems, hot flashes, vaginal dryness, difficulty sleeping) for which she did not receive the help she wanted. Multivariable analyses predicted having any unmet need as a function of patient demographic and health characteristics. RESULTS: The prevalence of unmet need varied by the type of symptom with the highest proportion of women receiving help for nausea and vomiting (0.91) and the lowest for vaginal dryness (0.48). Black women (OR = 3.61, 95% CI: [1.57, 8.31]), and Spanish-speaking Hispanic women (OR = 2.69, 95% CI: [1.22, 5.94]) were significantly more likely than white women to report an unmet need. More black and Hispanic women compared to white women cited the doctor not thinking treatment would benefit her (P = 0.02), not appreciating how much the problem bothered her (P = 0.03), not knowing about treatments (P < 0.0001), or insurance/cost barriers (P = 0.009) as reasons for her unmet need. CONCLUSION: These results show the persistence of racial disparities in the receipt of appropriate care within the health care system.

Symptoms after breast cancer treatment: are they influenced by patient characteristics?

PURPOSE: This study examines the burden of symptoms by treatment type and patient characteristics in a population-based sample of newly diagnosed breast cancer patients. METHODS: Using the Los Angeles County SEER Registry Rapid Case Ascertainment, we identified a cohort of breast cancer patients in 2000 and conducted telephone surveys in English and Spanish among participants. RESULTS: We completed interviews of 1,219 breast cancer patients and found almost half (46%) had at least one severe symptom (any of the following: nausea/vomiting, arm problems, hot flashes, vaginal dryness, difficulty sleeping) that interfered with her daily functioning or mood. Multi-variate analysis controlling for patient characteristics and treatment showed that older (OR=0.90; P<0.000), black (OR=0.50; P<0.000), Hispanic Spanish-speaking (OR=0.37; P<0.000), widowed or never married (OR=0.68; P=0.049), and working (OR=0.72; P=0.024) women were less likely to report severe symptoms than other women. Number of comorbid conditions (OR=1.21; P<0.000) and receipt of chemotherapy (OR=1.48; P=0.040) were positively associated with reporting symptoms. CONCLUSION: These findings estimate the prevalence of several mutable symptoms in breast cancer patients that can be addressed by appropriate treatments. Comorbidity is a significant predictor of symptoms, especially amongst those receiving chemotherapy. Variation in symptom reporting occurred by race/ethnicity and other sociodemographic characteristics, raising questions of different thresholds for reporting symptoms or truly fewer symptoms for some sociodemographic groups. Population-based estimates of the probability of symptoms in women with incident breast cancer can be used to provide patient education about potential outcomes following the treatment of breast cancer.

Does concordance between data sources vary by medical organization type?

OBJECTIVE: Little is known about how concordance between patient self-report and medical record data varies with medical organization type. Given discrepancies in quality of care received across patient cohorts and organizations, it is important to understand the degree to which concordance metrics are robust across organization types. We tested whether concordance between patient selfreport and medical record data would vary with medical organization type, controlling for patient demographic characteristics, health status, and domain of medical care. STUDY DESIGN: This observational study included 1270 patients sampled from 39 West Coast medical organizations with at least 1 of the following conditions: diabetes, ischemic heart disease, asthma or chronic obstructive pulmonary disease, or low back pain. METHODS: Medical records and patient self-report were used to measure 50 items grouped into 4 conceptual domains: diagnosis, clinical services delivered, counseling and referral, and medication use. We evaluated the concordance between ambulatory medical record and patient survey data. We conducted multivariate logistic regressions to test the impact of medical organization type (medical groups vs independent practice associations), controlling for patient characteristics and domain of care, on 5 concordance measures. RESULTS: Independent practice associations were associated with worse agreement, survey specificity, and medical record sensitivity, and better medical record specificity compared with medical groups. CONCLUSIONS: The medical record and patient survey do not measure quality comparably across organization types. We recommend continued efforts to improve survey data collection across different patient populations and to improve the quality of clinical data.

Does ambulatory process of care predict health-related quality of life outcomes for patients with chronic disease?

OBJECTIVE: The validity of quality of care measurement has important implications for practicing clinicians, their patients, and all involved with health care delivery. We used empirical data from managed care patients enrolled in west coast physician organizations to test the hypothesis that observed changes in health-related quality of life across a 2.5-year window reflecting process of care. DATA SOURCES/STUDY SETTING: Patient self-report data as well as clinically detailed medical record review regarding 963 patients with chronic disease associated with managed care from three west coast states. STUDY DESIGN: Prospective cohort study of change in health-related quality of life scores across 30 months as measured by change in SF-12 physical component scores. DATA COLLECTION/EXTRACTION METHODS: Patient self-report and medical record abstraction. PRINCIPAL FINDINGS: We found a positive relationship between better process scores and higher burden of illness (p<.05). After adjustment for burden of illness, using an instrumental variables approach revealed better process is associated with smaller declines in SF-12 scores across a 30-month observation window (p=.014). The application of the best quartile of process of care to patients currently receiving poor process is associated with a 4.24 increment in delta SF-12-physical component summary scores. CONCLUSIONS: The use of instrumental variables allowed us to demonstrate a significant relationship between better ambulatory process of care and better health-related quality of life. This finding underscores the importance of efforts to improve the process of care.

What is the concordance between the medical record and patient self-report as data sources for ambulatory care?

BACKGROUND: The validity of quality of care assessments relies upon data quality, yet little is known about the relative completeness and validity of data sources for evaluating the quality of care. OBJECTIVES: We evaluated concordance between ambulatory medical record and patient survey data. Levels of concordance, variations by type of item, sources of disagreement between data sources, and implications for quality of care assessment efforts are discussed. DESIGN AND SUBJECTS: This was an observational study that included 1270 patients sampled from 39 West Coast medical organizations with at least 1 of the following: diabetes, ischemic heart disease, asthma or chronic obstructive pulmonary disease, or low back pain. MEASURES: Items from both data sources were grouped into 4 conceptual domains: diagnosis, clinical services delivered, counseling and referral, and medication use. We present total agreement, kappa, sensitivity, and specificity at the item and domain-levels and for all items combined. RESULTS: We found good concordance between survey and medical records overall, but there was substantial variation within and across domains. The worst concordance was in the counseling and referrals domain, the best in the medication use domain. Patients were able to report with good sensitivity on memorable items. CONCLUSIONS: Quality ratings are likely to vary in differing directions, depending on the data source used. The most appropriate data source for analyses of components of and overall quality of care must be considered in light of study objectives and resources. We recommend data collection from multiple sources to most accurately portray the patient and provider experience of medical care.

Methodological challenges associated with patient responses to follow-up longitudinal surveys regarding quality of care.

OBJECTIVE: To illustrate, using empirical data, methodological challenges associated with patient responses to longitudinal surveys regarding the quality of process of care and health status, including overall response rate, differential response rate, and stability of responses with time. DATA SOURCES/STUDY SETTING: Primary patient self-report data were collected from 30,308 patients in 1996 and 13,438 patients in 1998 as part of a two-year longitudinal study of quality of care and health status of patients receiving care delivered by 63 physician organizations (physician groups) across three West Coast states. STUDY DESIGN: We analyzed longitudinal, observational data collected by Pacific Business Group on Health (PBGH) from patients aged 18-70 using a four-page survey in 1996 and a similar survey in 1998 to assess health status, satisfaction, use of services, and self-reported process of care. A subset of patients with self-reported chronic disease in the 1996 study received an enriched survey in 1998 to more fully detail processes of care for patients with chronic disease. DATA COLLECTION/EXTRACTION METHODS: We measured response rate overall and separately for patients with chronic disease. Logistic regression was used to assess the impact of 1996 predictors on response to the follow-up 1998 survey. We compared process of care scores without and with nonresponse weights. Additionally, we measured stability of patient responses over time using percent agreement and kappa statistics, and examined rates of gender inconsistencies reported across the 1996 and 1998 surveys. PRINCIPAL FINDINGS: In 1998, response rates were 54 percent overall and 63 percent for patients with chronic disease. Patient demographics, health status, use of services, and satisfaction with care in 1996 were all significant predictors of response in 1998, highlighting the importance of analytic strategies (i.e., application of nonresponse weights) to minimize bias in estimates of care and outcomes associated with longitudinal quality of care and health outcome analyses. Process of care scores weighted for nonresponse differed from unweighted scores (p<.001). Stability of responses across time was moderate, but varied by survey item from fair to excellent. CONCLUSIONS: Longitudinal analyses involving the collection of data from the same patients at two points in time provide opportunities for analysis of relationships between process and outcomes of care that cannot occur with cross-sectional data. We present empirical results documenting the scope of the problems and discuss options for responding to these challenges. With increasing emphasis in the United States on quality reporting and use of financial incentives for quality in the health care market, it is important to identify and address methodological challenges that potentially threaten the validity of quality-of-care assessments.