German translation of the PROMIS® pediatric anxiety, anger, depressive symptoms, fatigue, pain interference and peer relationships item banks.

BACKGROUND: The present study aimed at the translation and cross-cultural adaptation of six PROMIS® pediatric self- and proxy- item banks and short forms to universal German: anxiety (ANX), anger (ANG), depressive symptoms (DEP), Fatigue (FAT), pain interference (P) and peer relationships (PR). METHODS: Using standardized methodology approved by the PROMIS Statistical Center and in line with recommendations of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) PRO Translation Task Force, two translators for each German-speaking country (Germany, Austria, and Switzerland) commented on and rated the translation difficulty and provided forward translations, followed by a review and reconciliation phase. An independent translator performed back translations, which were reviewed and harmonized. The items were tested in cognitive interviews with 58 children and adolescents from Germany (16), Austria (22), and Switzerland (20) for the self-report and 42 parents and other caregivers (Germany (12), Austria (17), and Switzerland (13)) for the proxy-report. RESULTS: Translators rated the translation difficulty of most items (95%) as easy or feasible. Pretesting showed that items of the universal German version were understood as they were intended, as only 14 out of 82 items of the self-report and 15 out of 82 items of the proxy-report versions required minor rewording. However, on average German translators rated the items more difficult to translate (M = 1.5, SD = 0.20) than the Austrian (M = 1.3, SD = 0.16) and the Swiss translators (M = 1.2, SD = 0.14) on a three-point Likert scale. CONCLUSIONS: The translated German short forms are ready for use by researchers and clinicians ( https://www.healthmeasures.net/search-view-measures ).

A multitude of questionnaires exist, which are not comparable due to different questions or no available translations. PROMIS is an initiative, which was funded by the National Institute of Health in the US, to build better, i.e., more precise and efficient questionnaires, which can be used and compared worldwide. The PROMIS questionnaires include paper-and-pencil short forms and computerized adaptive tests. So far numerous PROMIS surveys have been created using advanced methodologies. They can be used by health care professionals to assess different aspects of health and compare the results internationally. To allow for international comparability of studies using those questionnaires, they need to be translated. This study reports the thorough translation process of the US-American PROMIS^® questionnaires measuring anxiety, anger, depressive symptoms, fatigue, pain interference, and peer relationships in children and adolescents into German. The translation included researchers, children, and parents from Germany, Austria, and Switzerland to ensure that the final German version is fully and equally well understood in all of those German-speaking countries. The article describes the translation process, so that the user can understand the translations and use them in an informed way. The translated German questionnaires are ready for use by researchers and clinicians. ( https://www.healthmeasures.net/search-view-measures ).

Correction to: Translation and cross-cultural adaptation of eight pediatric PROMIS® item banks into Spanish and German.

In the original publication of the article, two of the author names "L. A. Schröder, F. Metzner" and email address of the authors "J. Devine, J. Moon, A. C. Haller" were missed out. The correct author group with affiliations are provided in this correction.

Translation and cross-cultural adaptation of eight pediatric PROMIS® item banks into Spanish and German.

PURPOSE: The Patient-Reported Outcome Measurement Information System (PROMIS®) is a National Institutes of Health (NIH)-funded initiative to develop reliable, valid, and normed item banks to measure health. We describe the first large-scale translation and cross-cultural adaptation effort to German and Spanish of eight pediatric PROMIS item banks: Physical activity (PAC), subjective well-being (SWB), experiences of stress (EOS), and family relations (FAM). METHODS: We utilized methods outlined in the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) PRO Translation Task Force recommendations. Ten professional translators performed a translatability assessment and generated forward translations. Forward Translations were compared within a country and cross-culturally to identify problems and to produce a consensus-derived version, which was then back translated, evaluated, and revised where necessary. Reconciled versions were evaluated in cognitive interviews with 126 children before finalization. RESULTS: Eight resulting pediatric PROMIS® item banks were translated: Two PAC banks (22 total items), three SWB banks (125 total items), two EOS banks (45 total items), and one FAM bank (47 total items). Up to 92% of all items raised no or only minor translation difficulties, 0-5.6% were difficult to translate. Up to 20% item revisions were necessary to ensure conceptual equivalence and comprehensibility. Cognitive interviews indicated that 91-94% of the final items were appropriate for children (8-17 years). CONCLUSIONS: German and Spanish translations of eight PROMIS Pediatric item banks were created for clinical trials and routine pediatric health care. Initial translatability assessment and rigorous translation methodology helped to ensure conceptual equivalence and comprehensibility. Next steps include cross-cultural validation and adaptation studies.

Patient-reported outcomes: pathways to better health, better services, and better societies.

While the use of PROs in research is well established, many challenges lie ahead as their use is extended to other applications. There is consensus that health outcome evaluations that include PROs along with clinician-reported outcomes and administrative data are necessary to inform clinical and policy decisions. The initiatives presented in this paper underline evolving recognition that PROs play a unique role in adding the patient perspective alongside clinical (e.g., blood pressure) and organizational (e.g., admission rates) indicators for evaluating the effects of new products, selecting treatments, evaluating quality of care, and monitoring the health of the population. In this paper, we first explore the use of PRO measures to support drug approval and labeling claims. We critically evaluate the evidence and challenges associated with using PRO measures to improve healthcare delivery at individual and population levels. We further discuss the challenges associated with selecting from the abundance of measures available, opportunities afforded by agreeing on common metrics for constructs of interest, and the importance of establishing an evidence base that supports integrating PRO measures across the healthcare system to improve outcomes. We conclude that the integration of PROs as a key end point within individual patient care, healthcare organization and program performance evaluations, and population surveillance will be essential for evaluating whether increased healthcare expenditure is translating into better health outcomes.

Concordancia entre padres e hijos en la calidad de vida relacionada con la salud en niños con trastorno por déficit de atención con hiperactividad: estudio longitudinal / Parent-child agreement in the health related quality of life (HRQOL) of children with attention-deficit/hyperactivity disorder (ADHD): A longitudinal study

Objetivos: Evaluar la concordancia entre padres e hijos sobre los cambios producidos en la calidad de vida relacionada con la salud (CVRS) de niños tratados por trastorno por déficit de atención con hiperactividad (TDAH) durante un corto período de tiempo y comparar las puntuaciones con las normas de referencia de la población general. Métodos: Estudio prospectivo en niños de 6 a 12 años con TDAH. Los padres y sus hijos completaron la versión española del CHIP-CE (Child Health and Illness Profile-Child Edition ‘Perfil de salud infantil’) al iniciar el tratamiento y a las 8 semanas. Las puntuaciones del CHIP-CE de ambas visitas se compararon mediante el test de la t de Student para datos apareados, el tamaño del efecto (TE), los coeficientes de correlación intraclase (CCI) y los diagramas de dispersión. Las evaluaciones de padres e hijos se compararon con las puntuaciones del CHIP-CE de la muestra de referencia española. Resultados: En el análisis se incluyó a 31 niños y a sus padres. El mayor cambio entre la visita inicial y la visita de seguimiento se produjo en la dimensión de riesgos, tanto en los niños como en los padres (TE=0,24 y 0,49, respectivamente). El CCI presentó un intervalo de entre 0,44 (satisfacción) y 0,01 (riesgos). Las puntuaciones de los niños fueron similares a los valores de referencia poblacional. Todas las dimensiones de la versión de padres del CHIP-CE presentaron puntuaciones medias estandarizadas inferiores a los valores de referencia en la visita inicial y fueron próximas a los valores de referencia tras el tratamiento. Conclusiones: El presente estudio mostró poca concordancia entre padres e hijos y sugiere que se deberían recoger ambas perspectivas en futuros estudios del impacto y del tratamiento del TDAH (AU)

Objectives: To assess parent-child agreement on changes over a short-term period of time in the HRQOL of children treated for ADHD over a short period of time, and to compare child and parent ratings of children with ADHD with general population norms. Methods: Prospective study in children 6-12 years old with ADHD. Children and parents completed the Spanish versions of the Child Health and Illness Profile-Child Edition (CHIP-CE) before and after 8 weeks of treatment. CHIP-PE scores at both visits were compared using paired t tests and effect sizes (ES), intra-class correlation coefficients (ICC), and scatter plots. Child and parent ratings were compared with CHIP-CE scores for a general population sample. Results: Thirty-one children and parents were included in the analysis. The highest change between the first and the follow-up visit was on the Risk Avoidance domain both children and parents (effect size [ES]=0.24 and 0.40, respectively). The ICC ranged from 0.44 (Satisfaction) to 0.01 (Risk avoidance). Child self-ratings were close to general population values. All domains of the parent version presented standardized means below the reference values at the baseline visit and closer to the general population norm after treatment. Conclusions: This study found poor parent-child agreement and suggests that both ratings should be collected in future studies on the impact of ADHD and treatment effectiveness (AU)

[Parent-child agreement in the health related quality of life (HRQOL) of children with attention-deficit/hyperactivity disorder (ADHD): a longitudinal study]. / Concordancia entre padres e hijos en la calidad de vida relacionada con la salud en niños con trastorno por déficit de atención con hiperactividad: estudio longitudinal.

OBJECTIVES: To assess parent-child agreement on changes over a short-term period of time in the HRQOL of children treated for ADHD over a short period of time, and to compare child and parent ratings of children with ADHD with general population norms. METHODS: Prospective study in children 6-12 years old with ADHD. Children and parents completed the Spanish versions of the Child Health and Illness Profile-Child Edition (CHIP-CE) before and after 8 weeks of treatment. CHIP-PE scores at both visits were compared using paired t tests and effect sizes (ES), intra-class correlation coefficients (ICC), and scatter plots. Child and parent ratings were compared with CHIP-CE scores for a general population sample. RESULTS: Thirty-one children and parents were included in the analysis. The highest change between the first and the follow-up visit was on the Risk Avoidance domain both children and parents (effect size [ES]=0.24 and 0.40, respectively). The ICC ranged from 0.44 (Satisfaction) to 0.01 (Risk avoidance). Child self-ratings were close to general population values. All domains of the parent version presented standardized means below the reference values at the baseline visit and closer to the general population norm after treatment. CONCLUSIONS: This study found poor parent-child agreement and suggests that both ratings should be collected in future studies on the impact of ADHD and treatment effectiveness.

Prevalence of health problems and primary care physicians' specialty referral decisions.

OBJECTIVE: The researchers tested the hypothesis that the frequency with which patients present to primary care physicians with certain types of health problems is inversely related to the chances of specialty referral during an office visit. STUDY DESIGN: Cross-sectional analysis. POPULATION: The researchers used a data set composed of 78,107 primary care visits from the 1989 to 1994 National Ambulatory Medical Care Surveys. The physicians completed questionnaires after office visits. OUTCOMES MEASURED: The frequency of a health problem's presentation to primary care (practice prevalence) was defined as the percentage of all visits made to family physicians, general internists, and general pediatricians for that particular problem. The researchers estimated the correlation between a condition's practice prevalence and its referral ratio (percentage of visits referred to a specialist) and used logistic regression to estimate the effect of practice prevalence on the chances of referral during a visit. RESULTS: The practice prevalence of a condition and its referral rate had a strong inverse linear relationship (r=-0.87; P<.001). Compared with visits made for the uncommon problems, the odds of referral for those with intermediate or high practice prevalence were 0.49 (P=.004) and 0.22 (P<.001), respectively. Surgical conditions were referred more often than medical conditions, and a greater burden of comorbidities increased the odds of referral. CONCLUSIONS: Primary care physicians are more likely to make specialty referrals for patients with uncommon problems than those with common conditions This finding highlights the responsible judgment primary care physicians employ in recognizing the boundaries of their scope of practice. Practice prevalence is a defining feature of the primary care-specialty care interface.

Self-referral in point-of-service health plans.

CONTEXT: Most health maintenance organizations offer products with loosened restrictions on patients' access to specialty care. One such product is the point-of-service (POS) plan, which combines "gatekeeping" arrangements with the ability to self-refer at increased out-of-pocket costs. Few data are available from formal evaluations of this new type of plan. OBJECTIVES: To comprehensively describe the self-referral process in POS plans by quantifying rates of self-referral, identifying patients most likely to self-refer, characterizing patients' reasons for self-referral, and assessing satisfaction with specialty care. DESIGN: Retrospective cohort analysis using administrative databases composed of members aged 0 to 64 years who were enrolled in 3 POS health plans in the Midwest (n = 265 843), Northeast (n = 80 292), and mid-Atlantic (n = 39 888) regions for 6 to 12 months in 1996, and a 1997 telephone survey of specialty care users (n = 606) in the midwestern plan. MAIN OUTCOME MEASURES: Self-referred service use and charges, reasons for self-referral, and satisfaction with specialty care. RESULTS: Overall, 8.8% of enrollees in the midwestern POS plan, 16.7% in the northeastern plan, and 17.3% in the mid-Atlantic plan self-referred for at least 1 physician or nonphysician clinician visit. The proportions of enrollees self-referring to generalists (4.7%-8.5%) were slightly higher than the proportions self-referring to specialists (3.7%-7.2%) across all 3 plans. Nine percent to 16% of total charges were due to self-referral. The chances of self-referral to a specialist were increased for patients with chronic and orthopedic conditions, higher cost sharing for physician-approved services, and less continuity with their regular physician. Patients who self-referred to specialists preferred to access specialty care directly (38%), reported relationship problems with their regular physicians (28%), had an ongoing relationship with a specialist (23%), were confused about insurance rules (8%), and did not have a regular physician (3%). Compared with those referred to specialists by a physician, patients who self-referred were more satisfied with the specialty care they received. CONCLUSIONS: Having the option to self-refer is enough for most POS plan enrollees; 93% to 96% of enrollees did not exercise their POS option to obtain specialty care via self-referral during a 1-year interval. The potential downside of uncoordinated, self-referred service use in POS health plans is limited and counterbalanced by higher patient satisfaction with specialist services.

Primary care safety-net delivery sites in the United States: A comparison of community health centers, hospital outpatient departments, and physicians' offices.

CONTEXT: The US primary care safety net is composed of a loose network of community health centers, hospital outpatient departments, and physicians' offices. National data on how the mix of patients and services differ across sites are needed. OBJECTIVE: To develop and contrast national profiles of patient and service mix for primary care. DESIGN, SETTING, AND PATIENTS: Comparative analyses of 3 national surveys of primary care visits occurring in 1994: for data on physician's office visits, the National Ambulatory Medical Care Survey (NAMCS); for hospital outpatient department data, the National Hospital Ambulatory Medical Care Survey (NHAMCS); and for data on community health centers, the Bureau of Primary Health Care's 1994 Survey of Visits to Community Health Centers. A time trend analysis also was conducted using the 1998 NAMCS and NHAMCS. MAIN OUTCOME MEASURES: National estimates of primary care visit rates, types of patient presentation, patient case-mix, disposition of patients, and management interventions in 1994, and compared with 1998 data. RESULTS: The US population made 1.3 primary care visits per person in 1994, which accounted for 43.5% of all ambulatory visits to physicians' offices, community health centers, and hospital outpatient departments. Primary care visits per person were 20% lower for Hispanics and 33% lower for black, non-Hispanic persons compared with white, non-Hispanic persons. Visits to community health centers were more likely to be made by ethnic minorities, patients with Medicaid or no insurance, and rural dwellers than visits made to the other delivery sites. Visits at hospital outpatient departments were made by sicker populations and were characterized by less continuity than the other delivery sites. Controlling for patient mix, visits made to hospital outpatient departments were more commonly associated with imaging studies, minor surgery, and specialty referrals than those made to physicians' offices. In 1998, the US population made an estimated 3. 4 visits per person, 45.6% of which were primary care visits. National estimates of primary care visit rates and patient mix and practice pattern comparisons between hospital outpatient departments and physicians' offices were similar in 1998 and 1994. CONCLUSIONS: Expanding community health centers will likely improve access to primary care for vulnerable US populations. However, enhancing access to of physicians' offices is also needed to bolster the safety net. The greater service intensity and poorer continuity for primary care visits in hospital outpatient departments that we observed raises concern about the suitability of these clinics as primary care delivery sites. JAMA. 2000;284:2077-2083.

Parental preferences for primary and specialty care collaboration in the management of teenagers with congenital heart disease.

OBJECTIVES: We examined parental preferences for locus of service delivery for their teenager's congenital heart disease (CHD) and the influence of disease severity, sociodemographic factors, and insurance on these preferences. METHODS: A consecutive sample of parents of teenagers followed in a pediatric cardiology clinic completed a mailed questionnaire. Disease severity was classified as low (1 cardiovascular procedure), and high (cyanosis or single ventricle physiology). RESULTS: Eighty-six of 148 parents responded (58%): 40, low severity; 36, moderate severity; and 10, high severity of illness. Parents preferred using primary care providers (PCPs) as a point of first contact for all 11 of 11 general health concerns and 5 of 7 potential cardiovascular-related concerns: chest pain (52%), syncope (73%), seeming seriously ill (79%), sports physical examination (79%), and endocarditis prophylactic antibiotics (94%). Increasing disease severity was significantly associated with preferring cardiologists for 6 of 7 cardiovascular-related concerns. Overall, 58% of parents viewed their care as a PCP-cardiologist comanagement model versus a cardiologist-dominated model. Lower family income (odds ratio [OR]: 1.5; confidence interval [CI]: 1.0-2.2) and severity of illness (OR: 2.1; CI: 1.0-4.4) were associated with a comanagement model of health care versus a cardiologist-dominated model. CONCLUSIONS: This study suggests that the majority of parents of teenagers with CHD prefer to use their teenager's PCP for all routine health care needs and many cardiovascular health needs. Severity of illness and family income are positively associated with greater preference for cardiologist care.

Coordination of specialty referrals and physician satisfaction with referral care.

OBJECTIVES: To describe how physicians coordinate patient care for specialty referrals and to examine the effects of these activities on referring physicians' satisfaction with the specialty care their patients receive and referral completion. DESIGN AND METHODS: Prospective study of a consecutive sample of referrals (N = 963) made from the offices of 122 pediatricians in 85 practices in a national practice-based research network. Data sources included a physician survey completed when the referral was made (response rate, 99%) and a physician survey and medical record review conducted 3 months later (response rate, 85%). Referral completion was defined as receipt of written communication of referral results from the specialist. RESULTS: Pediatricians scheduled appointments with specialists for 39.3% and sent patient information to specialists for 50.8% of referrals. The adjusted odds of referral completion were increased 3-fold for those referrals for which the pediatrician scheduled the appointment and communicated with the specialist compared with those for which neither activity occurred. Referring physicians' satisfaction ratings were significantly increased by any type of specialist feedback and were highest for referrals involving specialist feedback by both telephone and letter. Elements of specialists' letters that significantly increased physician ratings of letter quality included presence of patient history, suggestions for future care, follow-up arrangements, and plans for comanaging care; only the inclusion of plans for comanaging patient care was significantly related to the referring physicians' overall satisfaction. CONCLUSIONS: Better coordination between referring physicians and specialists increases physician satisfaction with specialty care and enhances referral completion. Improvements in the referral process may be achieved through better communication and collaboration between primary care physicians and specialists.

Low-income women's priorities for primary care: a qualitative study.

BACKGROUND: Because of their challenging social and economic environments, low-income women may find particular features of primary care uniquely important. For this qualitative study we explored which features are priorities to women fiumi low-income settings and whether those priorities fit into an established primary care framework. METHODS: We performed a qualitative analysis of 4 focus groups of women aged 40 to 65 years from 4 community health clinics in Washington, DC. Prompted by semistructured open-ended questions, the focus groups discussed their experiences with ambulatory care and the attributes of primary care that they found important. The focus groups were audiotaped, and the tapes were transcribed verbatim and coded independently by 3 readers. RESULTS: The comments were independently organized into 5 content areas of primary care service delivery plus the construct of patient-provider relationship in the following order of frequency: accessibility (37.4%), the physician-patient relationship (37.4%), comprehensive scope of services (11.5%), coordination between providers (6.8%), continuity with a single clinician (3.7%), and accountability (3.2%). Commonly reported specific priorities included a sense of concern and respect from the clinicians and staff toward the patient, a physician who was willing to talk and spend time with them (attributes of the physician-patient relationship), weekend or evening hours, waiting times (attributes of organizational accessibility), location in the inner city and on public transport routes (an attribute of geographic accessibility), availability of coordinated social and clinical services on-site; and, availability of mental health services on-site (attributes of comprehensiveness and of coordination). CONCLUSIONS: All attributes of care that were priorities for low-income women fit into 1 of 6 content areas. Specific features within the content areas of accessibility, physician-patient relationship, and comprehensiveness were particularly important for these women.

The health profile of incarcerated male youths.

OBJECTIVE: To identify the health needs of adolescent males incarcerated in a juvenile justice facility and to compare their health profiles with those of male adolescents in the community. METHODS: Cross-sectional surveys were conducted of incarcerated (N = 202) and school (N = 379) samples of male youths. Questionnaires were self-administered and completed before admission health screens (incarcerated youth) or in classrooms (school sample). Health status was assessed by the Child Health and Illness Profile, Adolescent Edition, using scale and item means and by categorizing each youth's pattern of health into 1 of 13 mutually exclusive health profile types. RESULTS: Compared with school counterparts, incarcerated male youths had significantly worse health status as demonstrated by poorer health and functioning scores in perceived well being, self-esteem, physical discomfort, acute, chronic, and psychosocial disorders, family involvement, physical activity, interpersonal problem-solving, risk behaviors, and academic performance. Three profile types-High Risks, High Risks/Low Resilience, and Worst Health-accounted for patterns of health for 69.8% of incarcerated youth versus 37.3% of an age-matched school sample. Just 6.4% of incarcerated males were in the Excellent/Good Health profile types, which contrasted with 34.2% of the age-matched school sample. CONCLUSIONS: The health profiles of incarcerated male youths were worse than those of male youths in school. Our results indicate that rehabilitation programs will need to address incarcerated youth's basic health needs as well as modifying their risk and antisocial behaviors.

Gatekeeping and referral of children and adolescents to specialty care.

OBJECTIVE: In this study we examined how gatekeeping arrangements influence referrals to specialty care for children and adolescents in private and Medicaid insurance plans. DESIGN/PARTICIPANTS: We conducted a prospective study of office visits (n = 27 104) made to 142 pediatricians in 94 practices distributed throughout 36 states in a national primary care practice-based research network. During 10 practice-days, physicians and patients completed questionnaires on referred patients, while office staff kept logs of all visits. Physicians used medical records to complete questionnaires for a subset of patients 3 months after their referral was made. RESULTS: Gatekeeping arrangements were common among children and adolescents with private (57.8%) and Medicaid (43.3%) insurance. Patients in gatekeeping plans were more likely to be referred with private (3. 16% vs 1.85% visits referred) and Medicaid (5.39% vs 3.73%) financing. Increased parental requests for specialty care among gatekeeping patients did not explain the increased referral rate. Physicians' reasons for making the referral were similar between the two groups. Physicians were less likely to schedule an appointment or communicate with the specialist for referred patients in gatekeeping plans. However, rates of physician awareness that a specialist visit occurred and specialist communication back to pediatricians did not differ between the two groups 3 months after the referrals were made. CONCLUSIONS: Gatekeeping arrangements are common among insured children and adolescents in the United States. Our study suggests that gatekeeping arrangements increase referrals from pediatricians' offices to specialty care and compromise some aspects of coordination.

The pediatric primary-specialty care interface: how pediatricians refer children and adolescents to specialty care.

OBJECTIVE: To describe how pediatricians refer patients to specialists, including frequency of referral decisions, reasons for referral, and types of referrals. DESIGN: We conducted a prospective study of visits (N = 58 771) made to 142 pediatricians in a national primary care practice-based research network. During 20 consecutive practice days, physicians and parents completed questionnaires for referred patients, and office staff kept logs of all visits. Physicians used medical records to complete questionnaires 3 months after referrals were made. RESULTS: Pediatricians referred patients to specialists during 2.3% of office visits. Referrals made during telephone conversations with parents accounted for 27.5% of all referrals. The most common reason for referral was advice on diagnosis or treatment (74.3%). Referrals were made most commonly to surgical subspecialists (52.3%), followed by medical subspecialists (27.9%), nonphysicians (11.4%), and mental health practitioners (8.4%). Physicians requested a consultation or a referral with shared management in 75% of cases. Otitis media was the condition referred most often (9.2%). Fifty other conditions accounted for 84.3% of all referrals. CONCLUSIONS: About 1 in 40 pediatric visits result in referral. Getting advice from a specialist is the most common reason for referral. Pediatricians desire a collaborative relationship with specialists for most of their referred patients. Physician training to increase clinical competence may be most useful for the 50 most commonly referred conditions. Education concerning the referral process should focus on the respective roles of the referring physician and specialist, particularly as they pertain to successful approaches for comanaging referred patients.

Entry into primary care and continuity: the effects of access.

OBJECTIVES: This study examined the relationship between access and use of primary care physicians as sources of first contact and continuity with the medical system. METHODS: Data from the 1987 National Medical expenditure Survey were used to examine the effects of access on use of primary care physicians as sources of first contact for new episodes of care (by logistic regression) and as sources of continuity for all ambulatory visits (by multi-variate linear regression). RESULTS: No after-hours care, longer office waits, and longer travel times reduced the chances of a first-contact visit with a primary care physician for acute health problems. Longer appointment waits, no insurance, and no after-hours care were associated with lower levels of continuity. Generalists provided more first-contact care than specialists acting as primary care physicians, largely because of their more accessible practices. CONCLUSIONS: These data provide support for the linkage between access and care seeking with primary care physicians.

A taxonomy of adolescent health: development of the adolescent health profile-types.

OBJECTIVES: The aim of this study was to develop a taxonomy of health profile-types that describe adolescents' patterns of health as self-reported on a health status questionnaire. The intent was to be able to assign individuals to mutually exclusive and exhaustive groups that characterize the important aspects of their health and need for health services. METHODS: Cluster analytic empirical methods and clinically based conceptual methods were used to identify patterns of health in samples of adolescents from schools and from clinics that serve adolescents with chronic conditions and acute illnesses. Individuals with similar patterns of scores across multiple domains were assigned to the same profile-type. Results from the empirical and conceptually based methods were integrated to produce a practical system for assigning youths to profile-types. RESULTS: Four domains of health (Satisfaction, Discomfort, Risks and Resilience) were used to group individuals into 13 distinct profile-types. The profile-types were characterized primarily by the number of domains in which health is poor, identifying the unique combinations of problems that characterize different subgroups of adolescents. CONCLUSIONS: This method of reporting the information available on health status surveys is potentially a more informative way of identifying and classifying the health needs of subgroups in the population than is available from global scores or multiple scale scores. The reliability and validity of this taxonomy of health profile-types for the purposes of planning and evaluating health services must be demonstrated. That is the purpose of the accompanying study.

Reliability and validity of the adolescent health profile-types.

OBJECTIVES: The purpose of this study was to demonstrate the preliminary reliability and validity of a set 13 profiles of adolescent health that describe distinct patterns of health and health service requirements on four domains of health. METHODS: Reliability and validity were tested in four ethnically diverse population samples of urban and rural youths aged 11 to 17-years-old in public schools (N = 4,066). The reliability of the classification procedure and construct validity were examined in terms of the predicted and actual distributions of age, gender, race, socioeconomic status, and family type. School achievement, medical conditions, and the proportion of youths with a psychiatric disorder also were examined as tests of construct validity. RESULTS: The classification method was shown to produce consistent results across the four populations in terms of proportions of youths assigned with specific sociodemographic characteristics. Variations in health described by specific profiles showed expected relations to sociodemographic characteristics, family structure, school achievement, medical disorders, and psychiatric disorders. CONCLUSIONS: This taxonomy of health profile-types appears to effectively describe a set of patterns that characterize adolescent health. The profile-types provide a unique and practical method for identifying subgroups having distinct needs for health services, with potential utility for health policy and planning. Such integrative reporting methods are critical for more effective utilization of health status instruments in health resource planning and policy development.

Consumer experiences and provider perceptions of the quality of primary care: implications for managed care.

BACKGROUND: The purpose of this study was to determine the extent to which consumer and provider reports of primary care differ according to particular characteristics of the primary care setting. METHODS: A random sample of consumers was surveyed by telephone in a defined geographic area of Washington, DC, to determine their experiences with care provided to a randomly chosen child. The primary care provider of each respondent was sent a parallel survey. Scores were obtained for each of two subdomains in the four cardinal primary care domains (first contact, longitudinality, comprehensiveness, and coordination) and for three related domains (family centeredness, community orientation, and cultural competence). Differences between settings that did or did not impose limitations on autonomy for referrals and between fee-for-service and capitated settings were ascertained. RESULTS: Both consumers and their providers in settings characterized by high degrees of limitation on physician autonomy or by capitation reported better first-contact accessibility and a greater range of services available than did consumers in settings with low degrees of limitation, or by fee-for-service reimbursements to physicians. Consumers but not providers reported better family centeredness in these settings. Most other differences favored these settings as well, but these were not consistently statistically significant for both providers and consumers in both types of settings. CONCLUSIONS: The quality of primary care services in different settings can be ascertained by using an instrument with demonstrated reliability and convergent validity. Although certain types of settings, in the particular geographic area studied, appear to perform better in several key aspects of the primary care, replication of the study in other areas would be useful judging the performance of the newer types of settings to be superior to more conventional care for general populations.