Biomedical subjects

Donald L Patrick

Publications and source records attributed to Donald L Patrick.

At least 19 recordsLinked to original sources

PubMed2025

Genomic sequencing in diverse and underserved pediatric populations: Parent perspectives on understanding, uncertainty, psychosocial impact, and personal utility of results.

PURPOSE: Limited evidence evaluates parents' perceptions of their child's clinical genome-scale sequencing (GS) results, particularly among individuals from medically underserved groups. Five Clinical Sequencing Evidence-Generating Research consortium studies performed GS in children with suspected genetic conditions with high proportions of individuals from underserved groups to address this evidence gap. METHODS: Parents completed surveys of perceived understanding, personal utility, and test-related distress after GS result disclosure. We assessed outcomes' associations with child- and parent-related factors: child age; type of GS finding; and parent health literacy, numeracy, and education. RESULTS: A total of 1763 parents completed surveys; 83% met "underserved" criteria based on race, ethnicity, and risk factors for barriers to access. We observed high perceived understanding and personal utility and low test-related distress. Outcomes were associated with the type of GS finding; parents of children with a pathogenic or likely pathogenic finding endorsed higher personal utility and more test-related distress than those whose children had a variant of uncertain significance or normal finding. Personal utility was higher in parents who met the criteria for "underserved." CONCLUSION: Our findings shed light on correlates of parents' cognitive and emotional responses to their child's GS findings and emphasize the need for tailored support in disclosure discussions.

Humans↗

PubMed2003

Measuring and improving the quality of dying and death.

Improving end-of-life experience is a major challenge to successful aging. Deaths that are reasonably free of discomfort, in accordance with patients' wishes, and within acceptable professional and ethical standards are high-quality deaths. The authors developed a 31-item measure of the quality of dying and death and applied it in a community sample and a sample of hospice enrollees. Scores on the Quality of Dying and Death Instrument and measures of perceived quality of care were collected from patients' loved ones after death. Higher overall after-death ratings of the quality of care received from all providers and from physicians were associated with higher-quality dying and death. How well patients' symptoms were controlled in the community study and how well wishes were followed and treatments were explained in the hospice study were associated with higher-quality dying. Major challenges to end-of-life research include recruiting representative population samples, given widespread reluctance of patients and loved ones to participate in research at the end of life; important variation in evaluations among different reporters after death; reluctance of loved ones to assign negative evaluations to dying experiences after death; and the highly individual and dynamic nature of dying experiences. Overcoming these challenges is of great importance in the search for the social, organizational, and individual determinants of high-quality dying in the U.S. cultural and health care context.

Hospices↗

PubMed2003

Trajectories of health for older adults over time: accounting fully for death.

The process of healthy aging can best be described by plotting the trajectory of health-related variables over time. Unfortunately, graphs including data only from survivors may be misleading because they may confuse patterns of mortality with patterns of change in health. Two approaches for creating graphs that account for death in such situations are 1) to incorporate a category or value for death into the longitudinal health variable and 2) to measure time in years before death or some other event. The first approach has been applied to self-rated health (excellent to poor) and the 36-Item Short-Form Health Survey (SF-36). It allows for flexible and interpretable analyses and may be appropriate for other variables as well. The second approach also accounts fully for death, but the questions it can address are limited. Both approaches are useful and should be used at a minimum for supporting analyses in longitudinal studies in which persons die during observation.

Aged↗

PubMed2003

The Maine-Seattle back questionnaire: a 12-item disability questionnaire for evaluating patients with lumbar sciatica or stenosis: results of a derivation and validation cohort analysis.

STUDY DESIGN: Analysis of health-related quality of life data obtained from a prospective cohort study of patients with sciatica due to an intervertebral disc herniation or lumbar spinal stenosis. OBJECTIVE: To derive and validate a shortened version of a previously validated 23-item modification of the Roland-Morris Disability Questionnaire. SUMMARY OF BACKGROUND DATA: For patients with low back pain, improving health-related quality of life is often the main goal of therapy. The Roland-Morris Disability Questionnaire is one of the best validated and most frequently used back-specific functional status measures. A shortened version may permit more widespread use in clinical and research settings. METHODS: Data from 507 patients with sciatica enrolled in the Maine Lumbar Spine Study were used to derive a shortened version of a 23-item modification of the original Roland-Morris Disability Questionnaire using qualitative and cluster analysis techniques. The internal consistency, construct validity, reproducibility, and responsiveness in detecting change over a 3-month period for a new 12-item scale was compared to the original 23-item scale. The 12-item scale was then validated in an independent cohort of 148 patients with lumbar spinal stenosis. RESULTS: Internal consistency was very good but modestly lower for the 12-item instrument compared to the 23-item original scale. Reproducibility over a 3-month interval was good and did not differ between the 12-item and original scale. Findings from the validation cohort were similar or better than the derivation cohort. A high degree of construct validity with patient-reported symptoms was demonstrated for the 12-item and original scales. The responsiveness and interpretability of the 12-item scale over 3 months was excellent and comparable to the original scale. Responsiveness assessed in patients with lumbar spinal stenosis in the independent validation cohort showed consistent findings compared to patients with a disc herniation in the derivation cohort. CONCLUSIONS: This short, simple, self-administered 12-item back-specific functional status questionnaire performed extremely well in comparison with the original 23-item scale. If validated in additional study populations, this new questionnaire may be useful in the clinical setting as a way for providers to prospectively compare their outcomes of care to other patient populations, and to study treatment effectiveness.

Adult↗

PubMed2003

National Institutes of Health State-of-the-Science Conference Statement: Symptom Management in Cancer: Pain, Depression, and Fatigue, July 15-17, 2002.

BACKGROUND: Despite advances in early detection and effective treatment, cancer remains one of the most feared diseases. Among the most common side effects of cancer and treatments for cancer are pain, depression, and fatigue. Although research is producing increasingly hopeful insights into the causes and cures for cancer, efforts to manage the side effects of the disease and its treatments have not kept pace. The challenge that faces us is how to increase awareness of the importance of recognizing and actively addressing cancer-related distress. The National Institutes of Health (NIH) convened a State-of-the-Science Conference on Symptom Management in Cancer: Pain, Depression, and Fatigue to examine the current state of knowledge regarding the management of pain, depression, and fatigue in individuals with cancer and to identify directions for future research. Specifically, the conference examined how to identify individuals who are at risk for cancer-related pain, depression, and/or fatigue; what treatments work best to address these symptoms when they occur; and what is the best way to deliver interventions across the continuum of care. State-of-the-Science Process: A non-advocate, non-Federal, 14-member panel of experts representing the fields of oncology, radiology, psychology, nursing, public health, social work, and epidemiology prepared the statement. In addition, 24 experts in medical oncology, geriatrics, pharmacology, psychology, and neurology presented data to the panel and to the conference audience during the first 1.5 days of the conference. The panel then prepared its statement, addressing the five predetermined questions and drawing on submitted literature, the speakers' presentations, and discussions held at the conference. The statement was presented to the conference audience, followed by a press conference to allow the panel to respond to questions from the media. After its release at the conference, the draft statement was made available on the Internet. The panel's final statement is available at http://consensus.nih.gov. CONCLUSIONS: The panel concluded that the available evidence supports a variety of interventions for treating cancer patients' pain, depression, and fatigue. Clinicians should routinely use brief assessment tools to ask patients about pain, depression, and fatigue and to initiate evidence-based treatments. Assessment should include discussion about common symptoms experienced by cancer patients, and these discussions should continue over the duration of the illness. Impediments to effective symptom management in cancer patients can arise from different sources and interactions among providers, patients and their families, and the health care system. Numerous factors could interfere with adequate symptom management. Among these factors are incomplete effectiveness of some treatments, a lack of sufficient knowledge regarding effective treatment strategies, patient reluctance to report symptoms to caregivers, a belief that such symptoms are simply a part of the cancer experience that must be tolerated, and inadequate coverage and reimbursement for some treatments. Additional research is needed on the definition, occurrence, the treatment of pain, depression, and fatigue, alone and in combination, in adequately funded prospective studies. The panel also concluded that the state of the science in cancer symptom management should be reassessed periodically.

Biomedical Research↗

PubMed2003

Quality of life of adolescents with perceived disabilities.

OBJECTIVE: To compare the self-perceived quality of life (QoL) of adolescents with and without disabilities. METHOD: A school-based survey was conducted with 2801 7th to 12th grade students in a rural area of the United States. The Youth Quality of Life Instrument-Surveillance Module and the Youth Quality of Life Group-Disability Screener were completed. RESULTS: Twenty-one percent of all students surveyed reported having one or more physical, emotional, or learning disabilities. Adolescents with disabilities reported lower QoL than adolescent without disabilities. However, self-rated health, depressive symptoms, and contextual variables were significant covariates in the relationship between disability and QoL. CONCLUSIONS: These findings suggest channels to improve the QoL of adolescents with disabilities. Specifically, reducing social and environmental barriers to promote inclusion of adolescents with disabilities in school, family, and community activities is one practical avenue for reducing disparities in QoL.

Adolescent↗

PubMed2003

Accounting for deaths in longitudinal studies using the SF-36: the performance of the Physical Component Scale of the Short Form 36-item health survey and the PCTD.

BACKGROUND: Commonly used measures such as the Physical Component Scale of the Short Form 36-item health survey (PCS) are undefined at death, limiting longitudinal analyses to survivors, a healthier cohort that cannot be identified prospectively, and that might have had little change in health. One proposed approach is to transform the PCS into the Physical Component Transformed, with Deaths included (PCTD), which is the probability of being healthy 1 year later and for which deaths logically have a value of zero. Data missing for other reasons than death have not been considered. OBJECTIVE: To examine the performance of the PCTD, to determine the influence of including deaths, the additional effects of imputing missing values and adjusting for covariates, and the calibration of the PCTD in different populations. METHODS: We imputed missing values of the PCTD, calling the new variable the PCTDI. We compared the distributions of the PCS, PCTD, and PCTDI cross-sectionally and over time. In 3 different populations, we determined whether the PCTD accurately predicted the probability of being healthy 1 year later. RESULTS: The patients who died did not have extreme values on the PCTD. The experience of the cohort was best described by the PCTDI. The calibration of the PCTD was surprisingly good in all the populations examined. Results were similar for the physical function index. CONCLUSION: The PCTDI is an improvement over the PCS, in which patients who had died have no influence, and over the PCTD, where they might have too much influence. We recommend the PCTDI for longitudinal analyses of physical health when deaths occur, for primary or secondary analysis.

Aged↗

PubMed2003

Managed care, access to specialists, and outcomes among primary care patients with pain.

OBJECTIVE: To determine whether managed care controls were associated with reduced access to specialists and worse outcomes among primary care patients with pain. DATA SOURCES/STUDY SETTING: Patient, physician, and office manager questionnaires collected in the Seattle area in 1996-1997, plus data abstracted from patient records and health plans. STUDY DESIGN: A prospective cohort study of 2,275 adult patients with common pain problems recruited in the offices of 261 primary care physicians in Seattle. DATA COLLECTION: Patients completed a waiting room questionnaire and follow-up surveys at the end of the first and sixth months to measure access to specialists and outcomes. Intensity of managed care controls measured by plan managed care index and benefit/cost-sharing indexes, office managed care index, physician compensation, financial incentives, and use of clinical guidelines. PRINCIPAL FINDINGS: A financial withhold for referral was associated with a lower likelihood of referral to a physician specialist, a greater likelihood of seeing a specialist without referral, and a lower patient rating of care from the primary physician. Otherwise, patients in more managed offices and with greater out-of-network plan benefits had greater access to specialists. Patients with more versus less managed care had similar health outcomes, but patients in more managed offices had lower ratings of care provided by their primary physicians. CONCLUSIONS: Increased managed care controls were generally not associated with reduced access to specialists and worse health outcomes for primary care patients with pain, but patients in more managed offices had lower ratings of care provided by their primary physicians.

Adult↗

PubMed2002

Adolescent quality of life, part I: conceptual and measurement model.

Few quality of life instruments exist that focus on the positive aspects of adolescence, incorporate adolescents' perspectives and language, and apply to both general and vulnerable populations. With these goals in mind, a conceptual and measurement model was developed using inductive qualitative methods to guide construction of the Youth Quality of Life Instrument-Research Version (YQOL-R). A conceptual model with four domains-Sense of Self, Social Relationships, Environment, and General Quality of Life-is reported.

Adolescent↗

PubMed2002

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↗

PubMed2002

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↗

PubMed2002

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↗

PubMed2002

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↗

PubMed2002

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↗

PubMed2002

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↗

PubMed2002

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↗

PubMed2002

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↗

PubMed2002

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↗