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Measuring patient and clinician perspectives to evaluate change in health-related quality of life among patients with chronic obstructive pulmonary disease.

ABSTRACT: Many treatments aim to improve patients' health-related quality of life (HRQoL), and many care guidelines suggest assessing symptoms and their impact on HRQoL. However, there is a lack of consensus regarding which HRQoL outcome measures are appropriate to assess, and how much change on those measures depict significant HRQoL improvement.We used triangulation methods to identify and understand clinically important differences (CIDs) for the amount of change in HRQoL that reflects both health professionals and patients' values, among patients with chronic obstructive pulmonary disease (COPD).We incorporated three perspectives: (1) an expert panel of physicians familiar with the measurement of HRQoL in COPD patients; (2) 610 primary care COPD outpatients who completed baseline and bimonthly follow-up HRQoL interviews over the 12-month study; and (3) the primary care physicians (PCPs; n = 43) of these outpatients who assessed their patients' disease at baseline and at subsequent PCP visits during the year long study.The Chronic Respiratory Disease Questionnaire (CRQ), the Medical Outcomes Study Short Form 36-item survey (SF-36, version 2.0), and global assessments of change from each of the three perspectives for all HRQoL domains.With few exceptions, the CRQ was able to detect small changes at levels reported by the patients (1-2 points) and their PCPs (1-5 points). These results confirm minimal important difference standards developed in 1989 by Jaeschke et al. anchored on patient-perceived changes in HRQoL. In general, the expert panel and PCP CIDs were larger than the patient CIDs.This triangulation methodology yielded improved interpretation, understanding, and insights on stakeholder perspectives of CIDs for patient-reported outcomes.

SUBMITTER: Wyrwich KW

PROVIDER: S-EPMC1824754 | biostudies-other | 2007 Feb

REPOSITORIES: biostudies-other

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Project description:Background and aimsPatient-centered care (PCC) benefits patients, health-care providers, and health-care systems by providing delivery of care that addresses patient values and needs while improving provider experiences, and by decreasing health-care expenditure. To improve PCC, health-care systems need to measure it. Recently, we developed a PCC framework that is evidence based and patient informed. The purpose of this study was to gather the perspective of clinician-scientists and quality improvement experts regarding the PCC domains included in the framework. Their perspectives were used to refine these domains, which ultimately will inform the development of PCC quality indicators.MethodsParticipants were recruited via expert and snowball sampling. Semi-structured interviews were conducted with clinician-scientists and quality improvement experts from Canada, the United States, and the United Kingdom from October 2017 to January 2018. With the use of an interview guide developed using the PCC framework, interviews were audio recorded and transcribed for a thematic analysis using NVivo qualitative data analysis software. Inductive thematic analysis was used to identify themes and subthemes.ResultsSixteen semi-structured interviews were conducted, which included four clinician-scientists and 12 quality improvement experts. Twelve of the participants were from Canada, three from the United Kingdom, and one from the United States. From the thematic analysis, three major themes were identified: (a) measurability of PCC, (b) practical considerations for implementing measurement, and (c) policy and practice implications. Participants discussed barriers and recommendations to improve and increase the clarity of the PCC domains in health system reporting, resulting in several future directions to refine and target specific PCC domains.ConclusionClinician-scientists and quality improvement experts provided key recommendations for the measurement of PCC. The perspectives of key stakeholders in PCC measurement will inform strategies for the implementation and uptake of patient-centered quality indicators in health-care systems. The views of these key experts can lay the foundation for the development of standardized measures of PCC, to ensure monitoring and improvement of PCC.

Project description:ImportanceEnd-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed.ObjectiveTo identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities.Design, setting, and participantsThis qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians.ExposureStage IV or recurrent cancer.Main outcomes and measuresCare priorities.ResultsInterviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare.Conclusions and relevanceThe findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.

Project description:The Patient Reported Outcomes Measurement Information System 43-item short form (PROMIS-43) and the five-level EQ-5D (EQ-5D-5L) are recently developed measures of health-related quality of life (HRQL) that have potentially broad application in evaluating treatments and capturing burden of respiratory-related diseases. The aims of this study were: (1) to examine their psychometric properties in patients with chronic obstructive pulmonary disease (COPD), and (2) to identify dimensions of HRQL that differ and do not differ by lung function.We conducted a multi-center, cross-sectional study ("COPD Outcomes-based Network for Clinical Effectiveness & Research Translation" [CONCERT]). We analyzed patients who met spirometric criteria for COPD, and completed EQ-5D-5L and PROMIS questionnaires. Disease severity was graded based on the Global Initiative for Chronic Obstructive Lung Disease (GOLD) classification. Pulmonary function test, PROMIS-43, EQ-5D (index score and EQ-Visual Analog Scale [EQ-VAS]), six minute walk test (6MWT), and three dyspnea scales (mMRC, Borg, FACIT-Dyspnea) were administered. Validity and reliability of EQ-5D-5L and PROMIS-43 were examined, and differences in HRQL by GOLD grade were assessed.Data from 670 patients with COPD were analyzed (mean age 68.5 years; 58% male). More severe COPD was associated with more problems with mobility, self-care and usual activities (all p-values <0.01) according to EQ-5D-5L. Related domains on EQ-5D-5L, PROMIS and clinical measures were moderately (r = 0.30-0.49) to strongly (r ? 0.50) correlated. A statistically significant trend of decreasing HRQL with more severe lung functions was observed for EQ-5D-5L index scores, EQ-VAS scores, and PROMIS physical function and social roles.Results supported the validity of EQ-5D-5L and PROMIS-43 in COPD patients, and indicate that physical function and social activities decrease with level of lung function by GOLD grade, but not pain, mental health, sleep or fatigue as reported by patients.

Project description:BackgroundInhalers are the mainstay of treatment for patients suffering from chronic obstructive pulmonary disease. However, incorrect inhaler technique is a considerable challenge.ObjectiveWe aimed to evaluate inhaler technique and its association with quality of life in a sample of patients with chronic obstructive pulmonary disease.MethodsThis cross-sectional study included patients with confirmed chronic obstructive pulmonary disease who were prescribed at least 1 inhaler medication on a regular basis. Patients were recruited from the outpatient pulmonary clinic of a hospital in Tehran. Inhaler technique was assessed according to a validated checklist. Patients' quality of life was evaluated using Chronic Obstructive Pulmonary Disease Assessment Test.ResultsOne hundred seventy-five patients with mean (SD) age of 59.0 (10.1) years were included. Patients' devices were 192 (62.3%) pressurized metered-dose inhalers (including pressurized metered-dose inhalers plus spacer) and 116 (37.7%) dry powder inhalers. Unfortunately, only 2.86% of patients used their inhalers completely correct. The highest rate of errors was committed by patients who used metered-dose inhalers plus spacer. Patients with a higher educational degree had significantly lower rate of errors on average (P = 0.001). The most frequent errors made by patients using pressurized metered-dose inhalers or Turbuhaler was priming the inhaler before the first administration in 90.6% and 78.3% of patients, respectively. Chronic Obstructive Pulmonary Disease Assessment Test scores in patients using different inhaler devices were not significantly different. However, in patients with lower quality of life, significantly more patients had poor inhaler technique (P = 0.0001).ConclusionsThere is still considerable need for interventions to optimize inhaler technique. We also noted that appropriate inhaler technique is associated with better quality of life. (Curr Ther Res Clin Exp. 2020; 81:XXX-XXX).

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Measuring patient and clinician perspectives to evaluate change in health-related quality of life among patients with chronic obstructive pulmonary disease.

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