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Biomedical subjects

Donald L Patrick

Publications and source records attributed to Donald L Patrick.

At least 55 records · Page 3Linked to original sources

Adolescent quality of life, part II: initial validation of a new instrument.

The psychometric properties of the Youth Quality of Life Instrument-Research Version (YQOL-R) perceptual module are presented. Self-reports were obtained from 236 youth aged 12-18 years with mobility disability, attention-deficit hyperactivity disorder, or without self-reported chronic conditions. Item and factor analyses confirmed the hypothesized conceptual model derived from previous qualitative research. The scales of the YQOL-R showed acceptable internal consistency (Cronbach's alpha=0.77-0.96), reproducibility (ICCs=0.74-0.85), expected associations with other constructs, and ability to distinguish between known groups. The YQOL-R showed sufficient validity to encourage further use.

Adolescent↗

A new approach to multicultural item generation in the development of two obesity-specific measures: the Obesity and Weight Loss Quality of Life (OWLQOL) questionnaire and the Weight-Related Symptom Measure (WRSM).

BACKGROUND: Being overweight or obese has substantial effects on individuals' perceptions of their health and quality of life (QoL). Generic measures often miss important QoL information, and existing obesity-specific instruments have shortcomings with respect to cross-cultural input, application to differing levels of severity, conceptual clarity, and patient burden. OBJECTIVE: This study aimed to develop culturally sensitive measures of QoL and symptoms in overweight or obese persons, both those trying to lose weight and those not trying to lose weight. METHODS: Currently accepted criteria and guidelines for questionnaire development were streamlined and augmented to include cross-cultural input from 5 European countries and the United States. The preliminary pool of items was created based on qualitative interviews conducted in the United States, followed by an early check of item translatability and preharmonization across all languages. Ten additional qualitative in-country interviews were then conducted to produce further culture-specific items. This was followed by 2 forward and 1 backward translation, plus cognitive debriefing interviews in each country. Finally, an expanded international harmonization meeting was held to ensure inclusion of appropriate new items and their acceptability across all 6 cultures. RESULTS: The procedures described resulted in development of the 41-item Obesity and Weight Loss Quality of Life questionnaire and the 20-item Weight-Related Symptom Measure. These questionnaires are subject to further psychometric validation. CONCLUSIONS: Augmentation of the initial item-generation and international harmonization steps of questionnaire development through integration of cross-cultural input allowed greater validity of cross-cultural content while meeting time, budget, and resource constraints.

Adult↗

Managed care and the US health care system a social exchange perspective.

Many countries are importing managed care and price competition from the US to improve the performance of their health care systems. However, relatively little is known about how power is organized and exercised in the US health care system to control costs, improve quality and achieve other objectives. To close this knowledge gap, we applied social exchange theory to examine the power relations between purchasers, managed care organizations, providers and patients in the US health care system at three interrelated levels: (1) exchanges between purchasers and managed care organizations (MCOs); (2) exchanges between MCOs and physicians; and (3) exchanges between physicians and patients. The theory and evidence indicated that imbalanced exchange, or dependence, at all levels prompts behavior to move the exchange toward power balance. Collective action is a common strategy at all levels for reducing dependence and therefore, increasing power in exchange relations. The theoretical and research implications of exchange theory for the comparative study of health care systems are discussed.

Delivery of Health Care↗

A measure of the quality of dying and death. Initial validation using after-death interviews with family members.

A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.

Aged↗

Assessing health status and quality-of-life instruments: attributes and review criteria.

The field of health status and quality of life (QoL) measurement - as a formal discipline with a cohesive theoretical framework, accepted methods, and diverse applications--has been evolving for the better part of 30 years. To identify health status and QoL instruments and review them against rigorous criteria as a precursor to creating an instrument library for later dissemination, the Medical Outcomes Trust in 1994 created an independently functioning Scientific Advisory Committee (SAC). In the mid-1990s, the SAC defined a set of attributes and criteria to carry out instrument assessments; 5 years later, it updated and revised these materials to take account of the expanding theories and technologies upon which such instruments were being developed. This paper offers the SAC's current conceptualization of eight key attributes of health status and QoL instruments (i.e., conceptual and measurement model; reliability; validity; responsiveness; interpretability; respondent and administrative burden; alternate forms; and cultural and language adaptations) and the criteria by which instruments would be reviewed on each of those attributes. These are suggested guidelines for the field to consider and debate; as measurement techniques become both more familiar and more sophisticated, we expect that experts will wish to update and refine these criteria accordingly.

Health Services Research↗

The German version of the Oral Health Impact Profile--translation and psychometric properties.

The need for cross-culturally adapted oral-health specific health outcome measures is increasingly recognized in Germany. Following accepted cultural adaptation technique guidelines, we report the development of the German version of the Oral Health Impact Profile (OHIP). The original 49 items were translated using a forward-backward method. A de novo development of German items established content validity. A priori hypothesized associations between the OHIP summary score and self-reported oral health and five oral disorders were confirmed in a random sample of the general population (n = 163, age 20-60 yr). These associations were interpreted as support for construct validity. The instrument's responsiveness, as indicated by a mean OHIP summary score change from 45.0 to 28.3, was established in 67 consecutive patients treated for temporomandibular disorder pain (age 19-85 yr; 72% women). Test-retest reliability was demonstrated by intraclass correlation coefficients of 0.63-0.92 for dimensions and summary scores (convenience sample, n = 30, age 18-85 yr; 53% women). Internal consistency was high (Cronbach's alpha > 0.74). Sufficient discriminative and evaluative psychometric properties of the Oral Health Impact Profile German version (OHIP-G) make the instrument suitable for assessment of oral health-related quality of life in cross-sectional as well as longitudinal studies.

Adolescent↗

Managed care, access to mental health specialists, and outcomes among primary care patients with depressive symptoms.

OBJECTIVE: To determine whether managed care is associated with reduced access to mental health specialists and worse outcomes among primary care patients with depressive symptoms. DESIGN: Prospective cohort study. SETTING: Offices of 261 primary physicians in private practice in Seattle. PATIENTS: Patients (N = 17,187) were screened in waiting rooms, enrolling 1,336 adults with depressive symptoms. Patients (n = 942) completed follow-up surveys at 1, 3, and 6 months. MEASUREMENTS AND RESULTS: For each patient, the intensity of managed care was measured by the managedness of the patient's health plan, plan benefit indexes, presence or absence of a mental health carve-out, intensity of managed care in the patient's primary care office, physician financial incentives, and whether the physician read or used depression guidelines. Access measures were referral and actually seeing a mental health specialist. Outcomes were the Symptom Checklist for Depression, restricted activity days, and patient rating of care from primary physician. Approximately 23% of patients were referred to mental health specialists, and 38% saw a mental health specialist with or without referral. Managed care generally was not associated with a reduced likelihood of referral or seeing a mental health specialist. Patients in more-managed plans were less likely to be referred to a psychiatrist. Among low-income patients, a physician financial withhold for referral was associated with fewer mental health referrals. A physician productivity bonus was associated with greater access to mental health specialists. Depressive symptom and restricted activity day outcomes in more-managed health plans and offices were similar to or better than less-managed settings. Patients in more-managed offices had lower ratings of care from their primary physicians. CONCLUSIONS: The intensity of managed care was generally not associated with access to mental health specialists. The small number of managed care strategies associated with reduced access were offset by other strategies associated with increased access. Consequently, no adverse health outcomes were detected, but lower patient ratings of care provided by their primary physicians were found.

Adolescent↗

Dissatisfaction with medical services among Medicare beneficiaries with disabilities.

OBJECTIVE: To test the hypothesis that Medicare beneficiaries who have difficulties performing activities of daily living (ADLs) are more likely to report dissatisfaction with their health care than those without ADL difficulties. DESIGN: Cross-sectional study. SETTING: Sample from the 1998 Medicare Current Beneficiaries Survey. PARTICIPANTS: A population-based sample (N=19,650) of noninstitutionalized Medicare beneficiaries. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Satisfaction with overall quality and 9 specific aspects of medical services received in the last year. RESULTS: After adjusting for sociodemographic, behavioral, and system characteristics and compared with those without ADL difficulties, Medicare enrollees were more likely to report dissatisfaction with the overall quality of their health care as their number of activity restrictions increased (1-2 ADLs: odds ratio [OR]=1.5; 95% confidence interval [CI], 1.2-2.0; 3-4 ADLs: OR=1.7; 95% CI, 1.2-2.4; 5-6 ADLs: OR=1.9; 95% CI, 1.4-2.8). Analysis of satisfaction with the 9 specific aspects of care yielded similar results. CONCLUSION: Disability is a significant independent risk factor for dissatisfaction with health care in the Medicare population. Efforts should be made to identify individuals with ADL difficulties and to improve their ease and convenience of getting to a doctor, the availability of care off hours, the access to specialists, and the follow-up care received.

Activities of Daily Living↗

Studying communication about end-of-life care during the ICU family conference: development of a framework.

PURPOSE: Family-clinician communication in the intensive care unit (ICU) about withholding and withdrawing life support occurs frequently, yet few data exist to guide clinicians in its conduct. The purpose of this study was to develop an understanding of the way this communication is currently conducted. METHODS: We identified family conferences in the ICUs of 4 Seattle-area hospitals. Conferences were eligible if the physician leading the conference believed that discussion about withholding or withdrawing life support or the delivery of bad news was likely to occur and if all conference participants consented to participate. Fifty conferences were audiotaped, transcribed, and analyzed by using the principles of grounded theory. RESULTS: We developed 2 frameworks for describing and understanding this communication. The first framework describes communication content, including introductions, information exchange, discussions of the future, and closings. The second framework describes communication styles and support provided to families and other clinicians and includes a variety of techniques such as active listening, acknowledging informational complexity and emotional difficulty of the situation, and supporting family decision making. These frameworks identify what physicians discuss, how they present and respond to issues, and how they support families during these conferences. CONCLUSIONS: This article describes a qualitative methodology to understand clinician-family communication during the ICU family conference concerning end-of-life care and provides a frame of reference that may help guide clinicians who conduct these conferences. We also identify strategies clinicians use to improve communication and enhance the support provided. Further analyses and studies are needed to identify whether this framework or these strategies can improve family understanding or satisfaction or improve the quality care in the ICU.

Adolescent↗

Physical functional performance in persons using a manual wheelchair.

STUDY DESIGN: Descriptive study. OBJECTIVES: To develop a performance-based physical functional measure for people using a manual wheelchair, and to evaluate the feasibility and reliability of the administration of the new procedure. BACKGROUND: Most performance-based measures of physical function focus on balance and ambulation impairments. Recent developments of performance measures fail to produce a valid and reliable performance-based measure to quantify physical function in people who must rely on upper-body function to mobilize. METHODS: Eighteen adults (ages 18 to 67 years) who used a nonmotorized wheelchair participated in this study. Volunteers performed selected tasks from the Continuous Scale Physical Functional Performance (CS-PFP) test, modified for persons using a wheelchair. Outcome measures included scores on the Wheelchair Physical Functional Performance (WC-PFP) test and the Sickness Impact Profile (SIP) questionnaire. RESULTS: Participants had substantial disability (mean total SIP > 20). Total and domain scores of the WC-PFP had no ceiling or floor effects and were reproducible with intraclass correlation coefficients ranging from 0.87 to 0.96. Poorer self-rated health was correlated with poorer performance in the upper-body domain of the WC-PFP (r = -0.45). Those reporting disability in bathing and dressing using the SIP had significantly lower WC-PFP scores, indicating that the WC-PFP had construct validity. A significant correlation was not found between WC-PFP and the ambulation and mobility domains of the SIP. CONCLUSION: The WC-PFP provides a reliable and quantifiable measure of mobility in persons who use a manual wheelchair.

Activities of Daily Living↗

Assessing meaningful change in quality of life over time: a users' guide for clinicians.

The objective of this article is to help clinicians interpret trial-based quality of life (QOL) changes over time. We address a series of questions and provide guidelines that are fundamental to assessing and interpreting change. The issues addressed are as follows: (1) What are the characteristics of the population for whom changes in QOL are reported? (2) Is the QOL questionnaire reliable, valid, and responsive to change? (3) Are the timing and frequency of assessments adequate? (4) Is the study adequately powered? (5) How are multiple QOL outcomes addressed in analyses? (6) How are multiple time points handled? (7) Can alternative explanations account for the observed change or lack of observed change (eg, handling of missing data, survival differences, and changes in patient's QOL perspective over time)? and (8) How is statistical significance translated into meaningful change? These guidelines will support clinicians in reviewing the clinical trial literature, which in turn can help them use the data in the treatment decision process.

Adenocarcinoma↗

Functional status and somatization as predictors of medical offset in anxious and depressed patients.

OBJECTIVE: Certain anxious/depressed primary care patients decrease medical utilization after mental health treatment. Previous research has established demo-graphic and medical comorbidities as distinguishing these patients. We asked whether characteristics such as symptom severity, somatization, or health-related quality of life (HRQoL) could also distinguish patients who reduce or increase primary care utilization after mental health care. METHODS: Primary care patients in a mixed-model HMO were screened for untreated anxiety with and without depression, using the Symptom Checklist (SCL-90-R) and medical records abstractions, and also for HRQoL (SF-36). We identified 165 symptomatic patients who subsequently received mental health treatment and then defined two subgroups: 1) offset patients (reduced medical utilization the year after initiation of mental health treatment) (N=97); and 2) no-offset patients (increased utilization) (N =68). RESULTS: Three HRQoL domains (general health perceptions, physical functioning, and role functioning- physical) predicted increased offset savings in the year after initiation of mental health treatment. Each point of improved functioning in these domains was associated with 4 dollars to 10 dollars of additional offset savings. Somatization-related comorbidities were predictive of greater additional costs (230 dollars). CONCLUSION: Using models to predict individual patient costs, we found that HRQoL and somatic comorbidities did not predict by anxiety/depression symptom severity or medical comorbidities, but by increasing or decreasing utilization after mental health care. Patients with higher functioning levels and no somatic comorbidities were most likely to reduce utilization. These findings support growing evidence for the need of inclusion of reliable indicators of somatization and patients' functioning in offset research and inpatient care.

Activities of Daily Living↗

A review of selected patient-generated outcome measures and their application in clinical trials.

BACKGROUND: Patient-generated outcome measures have been developed in an effort to capture the individualistic nature of health-related quality of life (HRQoL). These measures differ from traditional HRQoL instruments in that they allow patients to individually define HRQoL domains or weights. Nevertheless, application of these measures may be challenging, particularly in a clinical trial setting. OBJECTIVE: The objective of this study was to provide a critical review of the following patient-generated outcome measures: Patient-Generated Index (PGI), Schedule for the Evaluation of Individual Quality of Life (SEIQoL), Repertory Grid, and Asthma Quality of Life Questionnaire (AQLQ). METHODS: We conducted a systematic literature review of the Medline and Olga databases and the journal Quality of Life Research and consulted experts. We abstracted data from eligible studies on the instruments' content, psychometric properties, and applicability in a clinical trial setting. RESULTS: The SEIQoL has shown to be reliable, valid, and responsive, but the PGI has not. Both instruments have poor practicality and have not been used in a clinical trial. The Repertory Grid's psychometric properties have not been well studied. The AQLQ is in part patient-generated and has been used in clinical trials. Nevertheless, the practicality of the individualized section is poor owing to the issue of missing data. All four instruments fail to provide a form of standardization needed for estimating population effects in a clinical trial. CONCLUSION: The applicability of patient-generated outcome measures in a clinical trial setting remains questionable. Patient-generated outcome measures appear to be useful primarily in complementing traditional HRQoL measures, guiding individual patient treatment decisions, and assisting the design of new measures.

Clinical Trials as Topic↗

Does adherence make a difference? Results from a community-based aquatic exercise program.

BACKGROUND: Evidence exists demonstrating the benefits of exercise for people with osteoarthritis, but little is known about whether exercise programs are effective, that is, whether the benefits of exercise can be seen in "real life" programs for "normal" people under nonlaboratory conditions. OBJECTIVE: To identify characteristics of and outcomes for participants who adhere to a community-based aquatic exercise program. METHOD: Two hundred and forty-nine adults with osteoarthritis were recruited from Washington State for randomization to a 20-week Arthritis Foundation aquatic exercise program (n = 125) or a wait-list control group (n = 124). Adherers were defined as those attending at least two classes per week for 16 of 20 weeks. Measures included: Quality of Well Being Scale, Health Assessment Questionnaire, Center for Epidemiological Studies-Depression Scale, and a single arthritis quality of life rating-item. RESULTS: Baseline to postintervention change scores revealed that treatment-group adherers (N = 35) reported improved quality of well-being, physical function, and change in arthritis quality of life compared to controls (N = 124). When comparing treatment-group adherers (N = 35) to treatment-group nonadherers (N = 67), quality of well-being and depressed mood improved for adherers, but not for nonadherers. CONCLUSION: When analyzed for level of participation, exercise benefits adults with osteoarthritis. Consistent participation in exercise programs results in better outcomes. Improved methods are needed to enhance adherence, with increased attention to the role of intrinsic factors such as self-efficacy and belief systems.

Aged↗

Depressive symptoms and mortality in a prospective study of 2,558 older adults.

OBJECTIVE: The authors report results from a 7-year prospective study of depression and mortality in 2,558 Medicare recipients age 65 and older. METHODS: This report is based on a secondary data analysis of a randomized controlled trial that evaluated the cost-effectiveness of preventive services for older enrollees in an HMO. RESULTS: Subjects with mild-to-moderate depression at baseline did not have an increased risk of mortality compared with those without significant depression. The 3% of older adults with the most severe depressive syndromes, however, had significant increases in mortality, even after adjusting for demographics, health risk behaviors, and chronic medical disorders. CONCLUSION: The increase in mortality in this group of older adults was comparable to that in participants with chronic medical disorders such as emphysema or heart disease.

Aged↗

Validation of electronic data capture of the Irritable Bowel Syndrome--Quality of Life Measure, the Work Productivity and Activity Impairment Questionnaire for Irritable Bowel Syndrome and the EuroQol.

OBJECTIVES: To assess the comparability, reliability, and subject acceptability of electronic data capture (EDC) versions of Irritable Bowel Syndrome-Quality of Life (IBS-QOL), EuroQoL (EQ-5D) and Work Productivity and Activity Impairment (WPAI:IBS) instruments. METHODS: Comparability of EDC and paper questionnaires was evaluated in 72 subjects with IBS who completed a baseline EDC or paper questionnaire, a crossover questionnaire 24 hours later, and a retest of the crossover version at 1 week. The EDC version was presented on a hand-held device. Comparability was assessed using paired t-test statistics, intraclass correlation coefficients (ICC) and tests for internal consistency (Cronbach's alpha). RESULTS: No significant differences were found between scores obtained by paper questionnaire and EDC at the baseline and crossover assessments. ICCs between baseline and crossover assessments ranged from 0.83 to 0.96 for the IBS-QOL scores, 0.82 to 0.96 for the WPAI:IBS scores, and 0.77 to 0.82 for the EQ-5D. Internal consistency was comparable for the two data collection methods for the IBS-QOL overall score (0.96) and subscales and the EQ-5D Index (0.70 vs. 0.74). Retest statistics (ICC) were generally comparable between the EDC and paper versions for all scores. Ease of use was comparable for the two modes of administration, but more patients preferred EDC (47.2%) than the paper questionnaire (23.6%). CONCLUSIONS: EDC versions of the IBS-QOL, EQ-5D, and WPAI:IBS are comparable to paper questionnaires in internal consistency and test-retest reliability, and have greater patient acceptability.

Absenteeism↗

Toward youth self-report of health and quality of life in population monitoring.

This paper addresses population monitoring of youth health and quality of life, including the concepts used, methodological and practical criteria for indicators, and existing surveys and measures. Current population surveys of youth generally focus on poor health, such as disability or health-risk behaviors. Although these are important end points, indicators of illness or risk do not reflect the health or life perspective of the majority of youth who do not experience health problems. The measures used to monitor youth health should be appropriate and sensitive to future needs and capture the perspectives of youths. Two potential concepts for this "scorecard" are self-perceived health and quality of life, which have been shown to be useful in adults. For youth, the quality of life framework seems particularly relevant as it incorporates both positive and negative aspects of health and well-being and also captures salient aspects of health other than physical health, such as sense of self, social relationships, environment and culture, and life satisfaction.

Adolescent↗