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ABSTRACT: PURPOSE: Patient-reported outcomes (PROs) are used increasingly for individual patient management. Identifying which PRO scores require a clinician's attention is an ongoing challenge. Previous research used a needs assessment to identify EORTC-QLQ-C30 cutoff scores representing unmet needs. This analysis attempted to replicate the previous findings in a new and larger sample. METHODS: This analysis used data from 408 Japanese ambulatory breast cancer patients who completed the QLQ-C30 and Supportive Care Needs Survey-Short Form-34 (SCNS-SF34). Applying the methods used previously, SCNS-SF34 item/domain scores were dichotomized as no versus some unmet need. We calculated area under the receiver operating characteristic curve (AUC) to evaluate QLQ-C30 scores' ability to discriminate between patients with no versus some unmet need based on SCNS-SF34 items/domains. For QLQ-C30 domains with AUC ≥ 0.70, we calculated the sensitivity, specificity, and predictive value of various cutoffs for identifying unmet needs. We hypothesized that compared to our original analysis, (1) the same six QLQ-C30 domains would have AUC ≥ 0.70, (2) the same SCNS-SF34 items would be best discriminated by QLQ-C30 scores, and (3) the sensitivity and specificity of our original cutoff scores would be supported. RESULTS: The findings from our original analysis were supported. The same six domains with AUC ≥ 0.70 in the original analysis had AUC ≥ 0.70 in this new sample, and the same SCNS-SF34 item was best discriminated by QLQ-C30 scores. Cutoff scores were identified with sensitivity ≥0.84 and specificity ≥0.54. CONCLUSION: Given these findings' concordance with our previous analysis, these QLQ-C30 cutoffs could be implemented in clinical practice and their usefulness evaluated.
Quality of Life Research 03/2013; · 2.30 Impact Factor
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ABSTRACT: PURPOSEBuilding on previous research documenting differences in preventive care quality between cancer survivors and noncancer controls, this study examines comorbid condition care. METHODS
Using data from the Surveillance, Epidemiology, and End Results (SEER) -Medicare database, we examined comorbid condition quality of care in patients with locoregional breast, prostate, or colorectal cancer diagnosed in 2004 who were age ≥ 66 years at diagnosis, who had survived ≥ 3 years, and who were enrolled in fee-for-service Medicare. Controls were frequency matched to cases on age, sex, race, and region. Quality of care was assessed from day 366 through day 1,095 postdiagnosis using published indicators of chronic (n = 10) and acute (n = 19) condition care. The proportion of eligible cancer survivors and controls who received recommended care was compared by using Fisher's exact tests. The chronic and acute indicators, respectively, were then combined into single logistic regression models for each cancer type to compare survivors' care receipt to that of controls, adjusting for clinical and sociodemographic variables and controlling for within-patient variation.ResultsThe sample matched 8,661 cancer survivors to 17,322 controls (mean age, 75 years; 65% male; 85% white). Colorectal cancer survivors were less likely than controls to receive appropriate care on both the chronic (odds ratio [OR], 0.88; 95% CI, 0.81 to 0.95) and acute (OR, 0.72; 95% CI, 0.61 to 0.85) indicators. Prostate cancer survivors were more likely to receive appropriate chronic care (OR, 1.28; 95% CI, 1.19 to 1.38) but less likely to receive quality acute care (OR, 0.75; 95% CI, 0.65 to 0.87). Breast cancer survivors received care equivalent to controls on both the chronic (OR, 1.06; 95% CI, 0.96 to 1.17) and acute (OR, 0.92; 95% CI, 0.76 to 1.13) indicators. CONCLUSION
Because we found differences by cancer type, research exploring factors associated with these differences in care quality is needed.
Journal of Clinical Oncology 02/2013; · 18.37 Impact Factor
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Bryce B Reeve,
Kathleen W Wyrwich,
Albert W Wu,
Galina Velikova,
Caroline B Terwee, Claire F Snyder,
Carolyn Schwartz,
Dennis A Revicki,
Carol M Moinpour,
Lori D McLeod, [......],
Ron D Hays,
Joanne Greenhalgh,
Richard Gershon,
David Feeny,
Peter M Fayers,
David Cella,
Michael Brundage,
Sara Ahmed,
Neil K Aaronson,
Zeeshan Butt
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ABSTRACT: PURPOSE: An essential aspect of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) is the integration of patient perspectives and experiences with clinical data to evaluate interventions. Thus, PCOR and CER require capturing patient-reported outcome (PRO) data appropriately to inform research, healthcare delivery, and policy. This initiative's goal was to identify minimum standards for the design and selection of a PRO measure for use in PCOR and CER. METHODS: We performed a literature review to find existing guidelines for the selection of PRO measures. We also conducted an online survey of the International Society for Quality of Life Research (ISOQOL) membership to solicit input on PRO standards. A standard was designated as "recommended" when >50 % respondents endorsed it as "required as a minimum standard." RESULTS: The literature review identified 387 articles. Survey response rate was 120 of 506 ISOQOL members. The respondents had an average of 15 years experience in PRO research, and 89 % felt competent or very competent providing feedback. Final recommendations for PRO measure standards included: documentation of the conceptual and measurement model; evidence for reliability, validity (content validity, construct validity, responsiveness); interpretability of scores; quality translation, and acceptable patient and investigator burden. CONCLUSION: The development of these minimum measurement standards is intended to promote the appropriate use of PRO measures to inform PCOR and CER, which in turn can improve the effectiveness and efficiency of healthcare delivery. A next step is to expand these minimum standards to identify best practices for selecting decision-relevant PRO measures.
Quality of Life Research 01/2013; · 2.30 Impact Factor
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ABSTRACT: Oncology health services research (HSR) is a broad, multidimensional field. Current areas of research foci may be informative. We searched Medline for oncology HSR papers published in English in a single year (2009). Abstracted data related to access, quality, cost, health/wellbeing, place on the cancer continuum and study design. Among 1113 papers, the most commonly studied HSR domain was quality-of-care (65%). Within the care continuum, 'treatment' received the greatest attention (37%), and 'prevention' the least (5%). More specifically, treatment-related quality-of-care was most often studied (23%). Breast cancer was the most common site focus (28%). Most studies were descriptive (75%), retrospective (35%) or cross-sectional (35%). These findings might inform the decisions of researchers or policy makers seeking to improve cancer health services delivery.
Expert Review of Pharmacoeconomics & Outcomes Research 10/2012; 12(5):615-22.
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ABSTRACT: There is increased interest in using patient-reported outcome (PRO) measures in routine clinical practice to improve patient management. The effectiveness of this intervention may be facilitated by providing suggestions to clinicians on how to address issues identified by the PROs. We sought to develop recommendations for clinicians on how to respond to issues covered by common cancer PRO questionnaires, including functional problems (eg, physical, social, emotional), symptoms (eg, diarrhea, pain), and needs (eg, patient care and support, information). The recommendations would be incorporated into a Web-based system for PRO assessment and reporting in use at our large, academic cancer center. To develop the recommendations, we conducted a multiphase, multidisciplinary, consensus process. We reviewed the literature and conducted one-on-one interviews with experts from various disciplines. Experts included medical oncologists, radiation oncologists, nurses, an internist, a palliative care specialist, an outcomes researcher, a chaplain, a social worker, and patient advocates. These interviews elicited the experts' recommendations for addressing problems in common PRO domains. Finally, we held a panel meeting attended by all the experts to attain consensus on the recommendations. The final consensus suggestions recommend further assessment of the problem as a first step. Treatment suggestions range from medication adjustments to lifestyle modifications to referrals to other disciplines. Further research will test whether clinicians find these suggestions useful for patient management.
The journal of supportive oncology 05/2012; 10(4):143-8.
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ABSTRACT: BACKGROUND: The PatientViewpoint website collects patient-reported outcomes and links them with the electronic health record to aid patient management. This pilot test evaluated PatientViewpoint's use, usefulness, and acceptability to patients and clinicians. METHODS: This was a single-arm prospective study that enrolled breast and prostate cancer patients undergoing treatment and the clinicians who managed them. Patients completed patient-reported outcomes every 2 weeks, and clinicians could access the results for patient visits. Scores that were poor relative to norms or substantially worse than the previous assessment were highlighted. After three on-study visits, we assessed patient and clinician perspectives on PatientViewpoint using close-ended and open-ended questions. RESULTS: Eleven out of 12 eligible clinicians (92%) and 52/76 eligible patients (68%) enrolled. Patients completed a median of 71% of assigned questionnaires; clinicians reported using the information for 79% of patients, most commonly as a source of additional information (51%). At the median, score reports identified three potential issues, of which 1 was discussed during the visit. Patients reported the system was easy to use (92%), useful (70%), aided recall of symptoms/side effects (72%), helped them feel more in control of their care (60%), improved discussions with their provider (49%), and improved care quality (39%). Patients and clinicians desired more information on score interpretation and minor adjustments to site navigation. CONCLUSIONS: These results support the feasibility and value of PatientViewpoint. An ongoing study is using a continuous quality improvement approach to further refine PatientViewpoint. Future studies will evaluate its impact on patient care and outcomes. Copyright © 2012 John Wiley & Sons, Ltd.
Psycho-Oncology 04/2012; · 3.34 Impact Factor
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ABSTRACT: Background:In 2001, the U.S. National Cancer Institute established the Cancer Outcomes Measurement Working Group (COMWG) to evaluate
and advance the state of the science in patient-reported outcome (PRO) measurement, with a focus on health-related quality
of life (HRQOL). To guide its work, the COMWG adopted the revised Medical Outcomes Trust (MOT) attributes and review criteria
for evaluating health status and quality-of-life instruments.
Objective:With the MOT attributes providing the organizing principle, this paper summarizes and draws inferences from key COMWG findings
about the methodological soundness of HRQOL assessment in cancer and steps required to move the field forward.
Results and Conclusions:Across a range of cancer research applications, especially clinical trials, a variety of generic, general cancer, and cancer
site-specific measures of HRQOL have demonstrated adequate reliability, validity, responsiveness, feasibility, and cultural
and language adaptation. Methodological challenges remain in the interpretability of HRQOL measures, though substantial progress
has been made in defining a “minimum important difference” in scale scores. Much work remains in forging a stronger link between
the conceptual model and measurement model in HRQOL instrumentation. Progress along all MOT attributes will likely accelerate
with the growing application of modern psychometrics, particularly item response theory modeling, which provides the underpinnings
for item banking and computer-adaptive assessment of HRQOL. Future research should emphasize prospectively designed studies
to evaluate PRO measures within the MOT framework and in-depth investigations of the role of PRO measures in cancer decision
making at all levels.
Quality of Life Research 04/2012; 16(1):143-164. · 2.30 Impact Factor
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ABSTRACT: While clinical care is frequently directed at making patients "feel better," patients' reports on their functioning and well-being (patient-reported outcomes [PROs]) are rarely collected in routine clinical practice. The International Society for Quality of Life Research (ISOQOL) has developed a User's Guide for Implementing Patient-Reported Outcomes Assessment in Clinical Practice. This paper summarizes the key issues from the User's Guide.
Using the literature, an ISOQOL team outlined considerations for using PROs in clinical practice; options for designing the intervention; and strengths, weaknesses, and resource requirements associated with each option.
Implementing routine PRO assessment involves a number of methodological and practical decisions, including (1) identifying the goals for collecting PROs in clinical practice, (2) selecting the patients, setting, and timing of assessments, (3) determining which questionnaire(s) to use, (4) choosing a mode for administering and scoring the questionnaire, (5) designing processes for reporting results, (6) identifying aids to facilitate score interpretation, (7) developing strategies for responding to issues identified by the questionnaires, and (8) evaluating the impact of the PRO intervention on the practice.
Integrating PROs in clinical practice has the potential to enhance patient-centered care. The online version of the User's Guide will be updated periodically.
Quality of Life Research 11/2011; 21(8):1305-14. · 2.30 Impact Factor
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ABSTRACT: Prostate cancer is the most common male cancer. Survival rates are high, making preventive care maintenance important. Factors associated with prostate-cancer cases' preventive care in the short-term (Year 1) and long-term (Year 5), and how survivors' care compares to non-cancer controls, require study.
This retrospective, controlled SEER-Medicare study included loco-regional prostate cancer cases age ≥ 66 in fee-for-service Medicare diagnosed in 2000 and surviving ≥ 12 months, and non-cancer controls matched to cases on socio-demographics and survival. Outcomes included influenza vaccination, cholesterol screening, and colorectal cancer screening. Independent variables were number of physician visits, physician specialties visited, initial prostate cancer treatment, socio-demographic characteristics, and case-control status.
There were 13,507 cases and 13,507 controls in Year 1, and 10,482 cases and 10,482 controls in Year 5. In Years 1 and 5, total number of visits (6/6 outcomes) and primary care provider (PCP) visits (5/6 outcomes) were most consistently associated with preventive care receipt. In Year 1, prostate cancer cases were more likely than controls to receive influenza vaccination (48% vs. 45%) but less likely to receive colorectal cancer screening (29% vs. 31%) (both p < 0.0001). In Year 5, prostate cancer cases remained more likely than controls to receive influenza vaccination (46% vs. 44%; p < 0.0001).
Differences in survivors' short-term preventive care did not lead to worse long-term preventive care. The number of physician visits, particularly PCP visits, are important factors associated with appropriate care.
PCP involvement in prostate cancer patients' care is critical both during treatment and for long-term survivors.
Journal of Cancer Survivorship 05/2011; 5(3):283-91. · 2.63 Impact Factor
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ABSTRACT: Patient-reported outcome (PRO) questionnaires are being investigated for their ability to aid in individual patient management. We evaluated whether PROs can identify patients' most bothersome quality-of-life issues and compared approaches for interpreting PRO scores.
This secondary data analysis included 130 patients with cancer (mean age, 57 years; 71% female) receiving outpatient palliative chemotherapy. Patients completed a PRO (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire [QLQ-C30]) at up to three consecutive visits and reported one or two of their most bothersome function and symptom issues from categories based on QLQ-C30 domains. We compared two approaches for interpreting PRO scores and identified which way better identified patients' most bothersome issues: worst scores in absolute terms or worst change from the previous time point.
For patients reporting one bothersome issue, absolute scores identified it correctly 91% of the time for both function and symptoms versus change scores' accuracy of 40% for function and 26% for symptoms. For patients reporting two bothersome issues, absolute scores identified at least one correctly 98% of the time for both function and symptoms versus change scores' 63% for function and 62% for symptoms. Absolute scores identified both issues correctly 42% of the time for function and 66% of the time for symptoms versus change scores' performance of 23% for both function and symptoms.
Absolute scores identify patients' most bothersome quality-of-life issues better than change scores. These results support the use of PROs in clinical practice and suggest that clinicians may want to focus on the worst absolute scores when examining PRO score reports.
Journal of Clinical Oncology 02/2011; 29(9):1216-20. · 18.37 Impact Factor
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ABSTRACT: The goal of this study was to perform a systematic review and meta-analysis to examine the effect of pre-existing diabetes on breast cancer-related outcomes.
We searched EMBASE and MEDLINE databases from inception through July 1, 2009, using search terms related to diabetes mellitus, cancer, and prognostic outcome. Studies were included if they reported a prognostic outcome by diabetes status, evaluated a cancer population, and contained original data published in the English language. We performed a meta-analysis of pre-existing diabetes and its effect on all-cause mortality in patients with breast cancer and qualitatively summarized other prognostic outcomes. Results: Of 8,828 titles identified, eight articles met inclusion/exclusion criteria and described outcomes in patients with breast cancer and diabetes. Pre-existing diabetes was significantly associated with all-cause mortality in six of seven studies. In a meta-analysis, patients with breast cancer and diabetes had a significantly higher all-cause mortality risk (pooled hazard ratio [HR], 1.49; 95% CI, 1.35 to 1.65) compared with their nondiabetic counterparts. Three of four studies found pre-existing diabetes to be associated with more advanced stage at presentation. Diabetes was also associated with altered regimens for breast cancer treatment and increased toxicity from chemotherapy.
Compared with their nondiabetic counterparts, patients with breast cancer and pre-existing diabetes have a greater risk of death and tend to present at later stages and receive altered treatment regimens. Studies are needed to investigate pathophysiologic interactions between diabetes and breast cancer and determine whether improvements in diabetes care can reduce mortality in patients with breast cancer.
Journal of Clinical Oncology 01/2011; 29(1):40-6. · 18.37 Impact Factor
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ABSTRACT: Data regarding costs of prostate cancer treatment are scarce. This study investigates how initial treatment choice affects short-term and long-term costs.
This retrospective, longitudinal cohort study followed prostate-cancer cases diagnosed in 2000 for 5 years using the Surveillance, Epidemiology, and End Results (SEER)-Medicare database. Men age≥66 years, in Medicare fee for service, diagnosed with clinically localized prostate cancer in 2000 while residing in a SEER region, were matched to noncancer controls using age, sex, race, region, comorbidity, and survival. On the basis of treatment received during the first 9 months postdiagnosis, patients were assigned to watchful waiting, radiation, hormonal therapy, hormonal+radiation, and surgery (may have received other treatments). Incremental costs for prostate cancer were the difference in costs for prostate cancer cases versus matched controls. Costs were divided into initial treatment (months -1 to 12), long-term (each 12 months thereafter), and total (months -1 to 60). Sensitivity analyses excluded the last 12 months of life.
A total of 13,769 prostate-cancer cases were matched to 13,769 noncancer controls. Watchful waiting had the lowest initial treatment ($4270) and 5-year total costs ($9130). Initial treatment costs were highest for hormonal+radiation ($17,474) and surgery ($15,197). At $26,896, 5-year total costs were highest for hormonal therapy only followed by hormonal+radiation ($25,097) and surgery ($19,214). After excluding the last 12 months of life, total costs were highest for hormonal+radiation ($23,488) and hormonal therapy ($23,199).
Patterns of costs vary widely based on initial treatment. These data can inform patients and clinicians considering treatment options and policy makers interested in patterns of costs.
Cancer 12/2010; 116(23):5391-9. · 4.77 Impact Factor
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ABSTRACT: To investigate relevant patient-reported outcome (PRO) domains for oncology clinical practice.
We conducted cross-sectional semi-structured telephone interviews with patients with breast and prostate cancer and clinicians. Using open-ended questions followed by structured prompts of PRO domains, subjects were asked what they currently discuss during visits and which topics are relevant for a clinical practice PRO. For each domain, we calculated the percentage of patients and clinicians who responded positively. A qualitative thematic content analysis identified barriers and benefits of using PROs in clinical practice.
A total of 41 patients (21 breast cancer and 20 prostate cancer) and 15 clinicians (7 medical oncologists, 5 radiation oncologists, and 3 surgeons) completed the interviews. In general, clinicians and patients reported that the topics explored were relevant. Barriers to using PROs in clinical practice include (1) time constraints, (2) varying relevance of questions, (3) value of the conversational approach, (4) decreased usefulness in established relationships, and (5) respondent burden. Benefits of PROs in clinical practice include (1) identifying problems, (2) serving as a reminder of topics to discuss, and (3) tracking changes over time.
PROs in clinical practice may help triage issues and focus discussions. Computer-adaptive tests should be explored to tailor questionnaires to patients' specific issues.
Quality of Life Research 09/2010; 19(7):1045-55. · 2.30 Impact Factor
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ABSTRACT: Diabetes appears to increase risk for some cancers, but the association between preexisting diabetes and postoperative mortality in cancer patients is less clear. Our objective was to systematically review postoperative mortality in cancer patients with and without preexisting diabetes and summarize results using meta-analysis. RSEARCH DESIGN AND METHODS: We searched the Medical Literature Analysis and Retrieval System Online (MEDLINE) and Excerpta Medica Database (EMBASE) for articles published on or before 1 July 2009, including references of qualifying articles. We included English language investigations of short-term postoperative mortality after initial cancer treatment. Titles, abstracts, and articles were reviewed by at least two independent readers. Study population and design, results, and quality components were abstracted with standard protocols by one reviewer and checked for accuracy by additional reviewers.
Of 8,828 titles identified in our original search, 20 articles met inclusion criteria for qualitative systematic review. Of these, 15 reported sufficient information to be combined in meta-analysis. Preexisting diabetes was associated with increased odds of postoperative mortality across all cancer types (OR = 1.85 [95% CI 1.40-2.45]). The risk associated with preexisting diabetes was attenuated but remained significant when we restricted the meta-analysis to models that controlled for confounders (1.51 [1.13-2.02]) or when we accounted for publication bias using the trim and fill method (1.52 [1.13-2.04]).
Compared with their nondiabetic counterparts, cancer patients with preexisting diabetes are approximately 50% more likely to die after surgery. Future research should investigate physiologic pathways to mortality risk and determine whether improvements in perioperative diabetes care can reduce postoperative mortality.
Diabetes care 04/2010; 33(4):931-9. · 8.09 Impact Factor
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ABSTRACT: A barrier to using HRQOL questionnaires for individual patient management is knowing what score represents a problem deserving attention. We explored using needs assessments to identify HRQOL scores associated with patient-reported unmet needs.
This cross-sectional study included 117 cancer patients (mean age 61 years; 51% men; 77% white) who completed the Supportive Care Needs Survey (SCNS) and EORTC QLQ-C30. SCNS scores were dichotomized as "no unmet need" versus "some unmet need" and served as an external criterion for identifying problem scores. We evaluated the discriminative ability of QLQ-C30 scores using receiver operating characteristic (ROC) analysis. Domains with an area under the ROC curve (AUC) >or= .70 were examined further to determine how well QLQ-C30 scores predicted presence/absence of unmet need.
We found AUCs >or= .70 for 6 of 14 EORTC domains: physical, emotional, role, global QOL, pain, fatigue. All 6 domains had sensitivity >or= .85 and specificity >or= .50. EORTC domains that closely matched the content of SCNS item(s) were more likely to have AUCs >or= .70. The appropriate cut-off depends on the relative importance of false positives and false negatives.
Needs assessments can identify HRQOL scores requiring clinicians' attention. Future research should confirm these findings using other HRQOL questionnaires and needs assessments.
Quality of Life Research 03/2010; 19(6):837-45. · 2.30 Impact Factor
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ABSTRACT: Objective: To assess the impact of immune thrombocytopenic purpura (ITP) on primary care and specialist visits and workplace productivity.
01/2010; 26(2):319-328.
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ABSTRACT: To assess the impact of immune thrombocytopenic purpura (ITP) on primary care and specialist visits and workplace productivity.
This was a cross-sectional, descriptive study comparing ITP patients to age- and gender-matched controls. Subjects completed a one-time web-based survey, which included questions on work loss, work productivity, and physician visits. ITP patients and controls were compared on these outcomes. For ITP patients, the relationship between work-related issues and physician visits with clinical characteristics (time since diagnosis, platelet count, number of treatments received, and an ITP-specific health-related quality of life measure, the ITP-PAQ) was explored.
A total of 1002 ITP patients and 1031 controls completed the survey. On average, ITP patients were 46 years old, diagnosed 9 years ago, and had platelet counts of 148 x 10(9)/L; 37% had undergone splenectomy. More ITP patients had primary care (20% vs. 11%) and specialist (28% vs. 11%) visits in the past month versus controls (p < or = 0.001). Higher proportions of ITP patients have ever taken sick leave (56% vs. 30%), and missed chore hours in the past week (18% vs. 13%) (p < or = 0.003). ITP patients scored significantly worse than controls on all six work productivity items. Patients diagnosed within the past year were more likely to have specialist visits and to miss chore hours versus those diagnosed less recently. Worse ITP-PAQ scores and more ITP-related treatments were related to more physician visits and worse work-related and productivity outcomes. Platelet count is not associated with these outcomes. The study is limited by the potential for biased samples due to recruitment approaches, the inherent issues of a cross-sectional study design and recall bias in questionnaire responses.
ITP was consistently associated with more physician visits and worse work and productivity outcomes. Future research should build on these findings by calculating a comprehensive cost-of-illness of ITP including both direct and indirect costs.
Current Medical Research and Opinion 12/2009; 26(2):319-28. · 2.38 Impact Factor
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The Lancet 09/2009; 374(9687):369-70. · 38.28 Impact Factor
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ABSTRACT: Patients with advanced cancer often do not receive high-quality pain and symptom management or support with coordination of care, communication, and decision making. Implementing quality indicators that are reflective of the scope of care, feasible to implement, and supported by evidence might help to identify areas and settings most in need of improvement. However, recent reviews and policy initiatives identified only a few indicators that met these criteria. To help advance quality indicator development and implementation in this area, we developed a conceptual framework based on previous related initiatives, updated reviews of end-of-life cancer quality indicators and relevant data sources, and expert input. The framework describes five steps for developing and assessing a quality indicator for end-of-life care, defining the 1) population of focus, 2) broad quality domains, 3) specific target areas, 4) steps of the care process, and 5) evaluation criteria for quality indicators. The defined population includes seriously or terminally ill cancer patients, who are unlikely to recover or stabilize, and their families. Domains include the structure and processes of care; the physical, psychiatric, psychosocial, spiritual, and cultural aspects of care; as well as the care of the imminently dying, ethical and legal issues, and the delivery of care. Evaluation criteria include importance; scientific acceptability, including validity, evidence to improve outcomes, reliability, responsiveness, and variability; usability; and feasibility, including ready data sources. By using this conceptual framework, indicator developers, researchers, and policymakers can refine and implement indicator sets to effectively evaluate and improve care at the end of life.
Journal of pain and symptom management 09/2009; 38(6):903-12. · 2.42 Impact Factor
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ABSTRACT: Quality indicators applicable to cancer end-of-life care exist, but have not been widely implemented. To advance this field, the authors worked with the Agency for Health Care Research and Quality and the National Cancer Institute to organize a national symposium to discuss key issues and future goals, based on a conceptual framework. Discussions focused on 8 key domains in end-of-life cancer care: pain; dyspnea; communication, care planning, and decision making; psychosocial care; communication about chemotherapy; depression; continuity, coordination, and care transitions; and spirituality and closure. Key themes included the need for clarity on definitions and key aspects of care within domains, the need to start implementing indicators in more developed domains, and the importance of high-quality symptom assessment and documentation of key processes. Key areas for future work include development of more outcome indicators, methods to better incorporate indicators and patient-reported outcomes into clinical processes of care, and coordination across domains and settings. Measuring the quality of end-of-life cancer care is essential to understanding how best to improve patient outcomes and care.
Cancer 07/2009; 115(17):3820-9. · 4.77 Impact Factor
