Effects of remote ear-nose-and-throat specialist assessment screening on self-reported hearing aid benefit and satisfaction.

OBJECTIVE: To explore the impact of remote versus in-person ear-nose-and-throat (ENT) specialist screening before hearing treatment on self-reported hearing aid (HA) benefit and satisfaction among adult first-time HA users. DESIGN: Participants were randomised to either remote or in-person ENT assessment before treatment initiation. Hearing ability, hearing quality, and treatment satisfaction were assessed pre- and post-HA treatment using the SSQ12, IOI-HA, and selected items from the 2021 Danish national Patient-Reported Experience Measures. Average daily HA usage was also recorded. STUDY SAMPLE: 751 adult potential first-time HA users with self-reported hearing impairment were included; 501 participants were remotely assessed in private or public audiological clinics, and 250 control group participants were assessed in-person by private ENT specialists. Of the 658 participants who completed the entire trial, 454 received HAs. RESULTS: No significant post-treatment HA benefit differences were found between groups. Remotely assessed HA recipients in private clinics expressed slightly higher staff and waiting time satisfaction. Participants with normal hearing and mild/moderate hearing loss reported higher pre-treatment hearing ability and quality. No significant difference in average daily HA usage was observed between groups. CONCLUSIONS: Findings suggest that remote screening does not compromise patient-reported HA benefit and satisfaction when compared to in-person screening.

Identifying and managing adverse drug reactions: Qualitative analysis of patient reports to the UK yellow card scheme.

INTRODUCTION: Adverse drug reactions (ADRs) can have significant negative impact on peoples' daily lives, with physical, economic, social and/or psychological effects. Patient reporting of ADRs has been facilitated by pharmacovigilance systems across Europe. However, capturing data on patients' experiences of ADRs has proved challenging. Existing patient reports to the UK Yellow Card Scheme contain free-text comments which could be useful sources of information. OBJECTIVES: To investigate patients' experiences of ADRs and their impact on patients as described in free-text data within patient Yellow Card (YC) reports submitted to the Medicines and Healthcare products Regulatory Agency. METHODS: A qualitative review of narrative texts was conducted on free-text data from 2255 patient YC reports from July to December 2015. RESULTS: Three key narrative themes emerged from analysis of the free-text data in 2255 reports: (1) identification of ADRs, (2) severity and impact of ADRs, and (3) management of ADRs. Temporal associations were the most common method of identification followed by differential diagnoses and confirmation with information sources such as healthcare professionals (HCPs). A combination of explicit and implicit impacts were described: physical, psychological, economic and social effects often persisted and caused serious disruption to many patients' lives. A range of strategies were used to manage ADRs, including consultation with HCPs, stopping/reducing the medicine or taking medicines to alleviate symptoms. CONCLUSION: Free-text data from YC reports has been an underutilised resource to date, but this research has confirmed its potential value to pharmacovigilance and medication safety research.

The Architecture of a Precision Oncology Platform.

Precision oncology is a novel research field and approach to cancer care which leverages high-throughput sequencing technologies and bioinformatics pipelines to determine diagnosis, prognosis, and treatment of patients in a personalized manner. This chapter provides an overview of a typical precision oncology software platform, from raw data to patient reports. Standard and advanced analytical components are described and discussed, along with their strengths and limitations, in general and in the context of a precision oncology application for advanced cancer patients.

Patients with inflammatory rheumatic diseases: quality of self-reported medical information in a prospective cohort event monitoring system.

OBJECTIVES: Assessment of the quality of patient-reported medical information in the Dutch Biologic Monitor and evaluation of the representativeness of the sampled participants. METHODS: Consecutive adult patients using a biologic DMARD (bDMARD) for an immune-mediated inflammatory disease were included in eight Dutch centres. For this substudy, data of 550 patients with inflammatory rheumatic diseases were used. Patient-reported bDMARD prescription, indication and combination therapy were verified for patients that permitted access to their electronic health record using percentage agreement and/or Cohen's kappa (n = 483). Conservative post hoc sensitivity analysis was performed to account for missing data. Population representativeness was tested for the entire substudy population by comparing age, gender and prescribed bDMARD to the centres' reference populations using Mann-Whitney U-test, χ2 goodness-of-fit or Fisher's exact test with Monte Carlo simulation (n = 550). RESULTS: The correct bDMARD was reported by 95.8% of the participants. Agreement between patients and electronic health record was almost perfect for indications (κ = 0.832) and substantial for combination therapies (κ = 0.725). Agreement on combination therapies remained substantial after post hoc sensitivity analysis (κ = 0.640). Gender distribution (P > 0.05) and bDMARD use (P > 0.05) were similar to the reference populations. Median age was different (58.0 vs 56.0 years, P = 0.04), but considered clinically irrelevant. CONCLUSION: The Dutch Biologic Monitor seems to be a valid tool to obtain patient-reported medical information. Reported medical information generally corresponded to the electronic health records and the participants represented their reference populations regarding age, gender and prescribed bDMARD.

The added value of geriatric assessment in evaluating a patient's Health-Related Quality-of-Life: A study in ≥70-year-old early-stage invasive breast cancer patients.

OBJECTIVE: The objective of this study was to assess the relationship between geriatric assessment (GA) and health-related Quality-of-Life (HRQOL) in older patients with breast cancer. METHODS: Patients were assigned either to adjuvant chemotherapy (CTG) or to a control group (CG). Spearman rank coefficients (ρ) calculated correlations between HRQOL and GA at baseline, 3 months and 1 year. Multivariate regressions modelled the prognostic value of GA in evaluating of a patient's HRQOL and the accuracy of baseline GA in predicting HRQOL decline (change of ≥10 points). RESULTS: The analysis included 57 patients in the CTG and 52 in the CG. Strong correlations (ρ ≥ 0.5) were reported between the EORTC QLQ-C30 Physical Functioning Scale and Activities of Daily Living (ADL), Instrumental ADL (iADL) and Leuven Oncogeriatric Frailty Score Scale (LOFS). Multivariate models demonstrated that poor iADL, ADL and LOFS (CG) and ADL and iADL (CTG) contributed to a statistically (all p < .05) worse HRQOL. The relative gain in predicting 3-month and 1-year HRQOL decline was 24.1% and 4.7% (CG) and 6.1% and 18.3% (CTG). CONCLUSION: Our results show that the functional measures in the GA are strongly correlated with patient self-reported functioning. Poor baseline GA has a modest probability of predicting HRQOL deterioration.

Health benefits of an adverse events reporting system for chronic pain patients using long-term opioids.

BACKGROUND: Safety data from long-term opioid therapy in the real world has been poorly studied in chronic non-cancer pain (CNCP). The aim was to design a pharmacovigilance data recording system and assess whether participation in this recording system improves pain management, enhancing patient's health status. METHODS: A pharmacovigilance data recording system was conducted during 24 months. Data were self-reported by patients (pain, adverse events [AEs] and healthcare resources use) and physicians (morphine equivalent daily dose [MEDD] prescribed and suspected adverse drug reaction [ADRs]). Outcomes from patients with (case) or without (controls) suspected ADRs and cases follow-up were also compared with Spanish Pharmacovigilance System data. RESULTS: A total of 753 patients were recruited in 897 visits. Fentanyl and tramadol were the most prescribed opioids, 89% with concomitant drugs, pregabalin being the one with the most potential drug interactions. Cases presented significantly higher pain intensity (VAS 67 ± 26 vs 59 ± 30 mm, P < 0.05), number of AEs (8 ± 6 vs 5 ± 3 AEs/patient, P < 0.01), polypharmacy related to pain (65% vs 34%, P < 0.01) and MEDD (139 ± 130 vs 106 ± 99 mg/d, P < 0.01) than controls. Furthermore, cases presented significant higher changes in pharmacological pain therapy due to pain, unplanned emergency visits and hospital admission than controls. Physicians notified 168 suspected ADRs mostly related to neurological or psychiatric events and 8% of them were previously unknown. CONCLUSIONS: This data recording system provided important information to achieve a better control of CNCP pharmacological pain therapy, improving patient's health status and reducing costs to the Health System.

Risk of myocardial infarction associated with non-steroidal anti-inflammatory drugs: Impact of additional confounding control for variables collected from self-reported data.

WHAT IS KNOWN AND OBJECTIVE: Important risk factors and over-the-counter (OTC) dispensing of non-steroidal anti-inflammatory drugs (NSAIDs) are often not routinely recorded in electronic health records. This study aimed to assess the impact of patient's reports on these factors on the risk of acute myocardial infarction (AMI) for NSAID use. METHODS: A nested case-control study was conducted among adults in the Utrecht Cardiovascular Pharmacogenetics study. Cases were patients with a first diagnosis of AMI as a hospital discharge diagnosis and controls were those without AMI. NSAID exposure was either current use of selective COX-2 inhibitors or conventional NSAIDs. Information was collected from The Dutch PHARMO Database Network (pharmacy records of drug dispensing linked to hospitalization records) and the patient's questionnaire (lifestyle factors, body mass index and history of cardiovascular diseases). Unconditional logistic regression analysis was used to calculate odds ratios (ORs) and to control for confounding factors. RESULTS: We identified 970 AMI cases and 2974 controls. Among cases, 11 (1.1%) and 185 (19.1%) were exposed to selective COX-2 inhibitors and conventional NSAIDs, respectively. Compared to non-use, none of these drug classes were associated with an increased risk of AMI (adjusted OR 1.07, 95% CI: 0.52-2.18 and 0.93, 95% CI: 0.77-1.12, respectively). Additional adjustment for potential confounders from patient's reports did not change the risk estimates (adjusted OR 1.08, 95% CI: 0.53-2.22 and 0.89, 95% CI: 0.73-1.09, respectively). WHAT IS NEW AND CONCLUSION: Additional confounding control for variables from self-reported data or considering self-reported OTC NSAID use did not change the risk estimates for the association between NSAIDs and AMI.

Comparison of the Michigan Hand Outcomes Questionnaire, Boston Carpal Tunnel Questionnaire, and PROMIS Instruments in Carpal Tunnel Syndrome.

PURPOSE: Patient-reported outcomes are important to assess improvement after surgery. Common instruments for carpal tunnel syndrome include the Michigan Hand Outcomes Questionnaire (MHQ) and Boston Carpal Tunnel Questionnaire (CTQ). The Patient-Reported Outcomes Measurement Information System (PROMIS) are newer measures. We evaluated how the PROMIS Pain Interference (PI) and Upper Extremity (UE) scores change after carpal tunnel release. METHODS: All adult patients with carpal tunnel syndrome treated surgically were asked to participate in this prospective study. PROMIS instruments, MHQ, and CTQ were completed by 101 patients. Estimated means and standard errors were calculated, and piecewise linear fixed effects regression models were applied to the data. Standardized response means were calculated for each outcome measure. RESULTS: The MHQ Total Score did not show a considerable change from the preoperative to 1-week postoperative visit but improved from the 1-week to 3-month postoperative visit (55 to 80). The CTQ Functional Status Score (FSS) worsened from 2.3 preoperatively to 2.6 at the 1-week postoperative visit before improving through the 3-month postoperative visit (1.6). PROMIS UE showed responsiveness similar to the CTQ FSS with a decline at the 1-week visit, 38 to 33, followed by improvement (45 at 3 mo). However, the standardized response mean values were greater for the CTQ FSS compared with PROMIS UE. The average administration time was shortest for PROMIS UE. The CTQ Symptom Severity Scale and MHQ Pain Scores showed improvements as early as the 1-week visit. The CTQ Symptom Severity Scale improved from 3.1 to 2.3, and MHQ Pain Scores improved from 55 to 46. PROMIS PI did not change at the 1-week visit but improved at 6 weeks and 3 months, from 56 to 52 and 49. The standardized response means for PROMIS PI achieved a large effect size only at 3 months. CONCLUSIONS: The CTQ FSS is more responsive than PROMIS UE and the MHQ, with the CTQ FSS showing the largest effect sizes. PROMIS PI does not show the responsiveness seen in the CTQ Symptom Severity Scale and MHQ Pain Score. PROMIS instruments require less time to complete. CLINICAL RELEVANCE: This study demonstrates the change in PROMIS scores after carpal tunnel release and how they compare with legacy outcome instruments.

[Taking patients' views into consideration at planning and evaluating care. Patient Reported Outcomes]. / A páciensek véleményének figyelembevétele az egészségügyi ellátás tervezése és értékelése során. A páciensek egészségértékelése.

Provision of patient-centred health care is impossible without the knowledge of the patient's perceptions, feelings and expectations. In contrast, participants feel the available time limited for satisfactory communication. This shortage may partially be compensated by measurements belonging to the concept of Patient Reported Outcomes. Concept definition, invention circle and use of the methods are largely diverse, eventually leading to misinterpretation of outcomes. For this reason, some organizations developed instructions, guidelines supporting uniform interpretation and application. Measures so far have rather served research goals yet may be applied in the clinical practice as well. They are not only appropriate for the evaluation of outcomes, judgement of adequacy and safety of care on systemic or institutional level, but also for the planning of individual patient care and supporting communication and co-operation. The present paper aims to provide general information and references for introducing the details. Orv Hetil. 2018; 159(6): 215-222.

Health Care Applicability of a Patient-Centric Web Portal for Patients' Medication Experience.

BACKGROUND: With the advent of the patient-centered care paradigm, it is important to examine what patients' reports of medication experience (PROME) mean to patient care. PROME available through a Web portal provide information on medication treatment options and outcomes from the patient's perspective. Patients who find certain PROME compelling are likely to mention them at their physician visit, triggering a discussion between the patient and the physician. However, no studies have examined PROME's potential applicability to patient care. OBJECTIVE: This study aimed to examine older (≥50 years) adults' perceptions of the health care applicability of a hypothetical PROME Web portal. Specifically, this study investigated whether PROME would facilitate patient-physician communication, and identified the preferred reporting items and the trusted sponsors of such a PROME Web portal. METHODS: We used a cross-sectional, self-administered, 5-point Likert scale survey to examine participants' perceptions of a hypothetical PROME Web portal that compared PROME for 5 common antihypertensive medications. Between August and December 2013, we recruited 300 members of 7 seniors' centers in a metropolitan area of a southeastern state of the United States to participate in the survey. RESULTS: An overwhelming majority of study participants (243/300, 81.0%) had a favorable perception of PROME's health care applicability. They were mostly positive that PROME would facilitate patient-physician communication, except for the perception that physicians would be upset by the mention of PROME (n=133, 44.3%). Further, 85.7% (n=257) of participants considered the PROME information trustworthy, and 72.0% (n=216) were willing to participate by reporting their own medication experiences. Study participants wanted the PROME Web portal to report the number of reviews, star ratings, and individual comments concerning different medication attributes such as side effects (224/809, 27.7%), cost (168/809, 20.8%), and effectiveness (153/809, 18.9%). Finally, the PROME Web portal sponsorship was important to participants, with the most trusted sponsor being academic institutions (120/400, 30.0%). CONCLUSIONS: PROME, if well compiled through Web portals, have the potential to facilitate patient-physician communication.

Associations between technical quality of diabetes care and patient experience.

AIMS: It has long been held that high-quality care has both technical and interpersonal aspects. The nature and strength of any association between both aspects remain poorly explored. This study investigated the associations between diabetes patients' reports of receiving recommended care (as measures of technical quality) and their experience and ratings (as measures of interpersonal care). METHODS: Using data from a cross section of 3096 patients with diabetes nested within 24 diabetes-care-networks, we conducted multilevel regression analysis of the relationships between nine indicators of receiving care recommended in practice guidelines and: six scales of patient experience and global ratings of general practitioner, nurses, and overall diabetes care. RESULTS: On average, reporting having received recommended care was associated with reporting better patient experience and ratings. The extent and frequencies of these associations varied across the different care processes. Receiving foot examination, physical activity advice, smoking status check, eye examination, and HbA1c testing, but not nutritional advice, urine, cholesterol or blood pressure checks, were statistically associated with better patient experience and global ratings. Those who received HbA1c testing rated their overall care 1.002 points higher (95% confidence interval: 0.726-1.278) on a scale of 0-10 than those who did not. CONCLUSIONS: Higher self-reported technical quality of care in diabetes appears to be frequently but not always associated with better experiences and ratings. It is possible that the former leads to the latter and/or that both share a common cause within providers. Both care aspects do not seem interchangeable during performance assessment.

Leveraging eHealth Technology for Oral Chemotherapy Management: A Literature Review.

BACKGROUND: Patients prescribed oral chemotherapy (OC) may find adherence and management of side effects difficult. Leveraging technology available to patients, such as smartphones, laptops, or at-home computer devices, may help close the loop on crucial information needed for the safe administration of these toxic medications. OBJECTIVES: The primary aim of this review was to explore the feasibility of standardization of an electronic OC adherence questionnaire to gather patient-reported outcomes. The secondary aim was to determine whether patient-reported outcome measures improve providers' response times to patient-reported concerns. METHODS: A comprehensive literature review was performed in CINAHL®, Scopus®, Open Access Journal Finder, and SocINDEX. Ten articles, from which four themes were synthesized and discussed, were selected for this review. FINDINGS: Leveraging eHealth using an OC adherence questionnaire to monitor medication adherence, laboratory testing schedule adherence, and self-management of symptoms and disease, as well as providers' timely response to potential issues, may improve overall health outcomes.

Tick-Borne Surveillance Patterns in Perceived Non-Endemic Geographic Areas: Human Tick Encounters and Disease Outcomes.

Recent scholarship supports the use of tick bite encounters as a proxy for human disease risk. Extending entomological monitoring, this study was designed to provide geographically salient information on self-reported tick bite encounters by survey respondents who concomitantly reported a Lyme disease (LD) diagnosis in a state perceived as non-endemic to tick-borne illness. Focusing on Texas, a mixed-methods approach was used to compare data on tick bite encounters from self-reported LD patients with county-level confirmed cases of LD from the U.S. Centers for Disease Control and Prevention (CDC), as well as serological canine reports. A greater proportion of respondents reported not recalling a tick bite in the study population, but a binomial test indicated that this difference was not statistically significant. A secondary analysis compared neighboring county-level data and ecological regions. Using multi-layer thematic mapping, our findings indicated that tick bite reports accurately overlapped with the geographic patterns of those patients previously known to be CDC-positive for serological LD and with canine-positive tests for Borrelia burgdorferi, anaplasmosis, and ehrlichiosis, as well as within neighboring counties and ecological regions. LD patient-reported tick bite encounters, corrected for population density, also accurately aligned with official CDC county hot-spots. Given the large number of counties in Texas, these findings are notable. Overall, the study demonstrates that direct, clinically diagnosed patient reports with county-level tick bite encounter data offer important public health surveillance measures, particularly as it pertains to difficult-to-diagnose diseases where testing protocols may not be well established. Further integration of geo-ecological and socio-demographic factors with existing national epidemiological data, as well as increasingly accessible self-report methods such as online surveys, will contribute to the contextual information needed to organize and implement a coordinated public health response to LD.

Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study.

BACKGROUND: Autosomal dominant polycystic kidney disease (ADPKD) is a rare inherited kidney disorder with considerable symptom burden and negative effects even in early-stage disease. Patients' reporting of ADPKD symptom burden may differ from physicians' impressions. In this quantitative, cross-section survey study, we evaluated patient and physician assessments of symptom burden at early- and late-stage ADPKD. METHODS: In the United States, 300 patients with ADPKD and 155 physicians treating patients with ADPKD completed online surveys administered by Kantar. Disease stage was categorized as early (chronic kidney disease [CKD] stages 1-3) or late (stages 4-5). Patients completed the Work Productivity and Activity Impairment Questionnaire and reported current disease symptoms. Patients and physicians assessed impacts of ADPKD on daily life and burden of specific symptoms. Statistical analyses compared patient versus physician responses stratified by early- versus late-stage ADPKD. RESULTS: We found that impairment in work productivity was statistically greater in late- versus early-stage CKD. Compared with physicians' impressions, patients were more likely at early stages and less likely at later stages to report a moderate/strong impact of ADPKD on daily life. Among patients, 74% with early- and 88% with late-stage disease reported that ADPKD caused them to modify their daily lives. In early-stage disease, patients reported a statistically greater burden from feeling exhausted and less burden from dull kidney pain, cardiovascular problems, high blood pressure, and liver cysts than physicians assumed. At later stages, patients reported feeling exhausted and skeletal/joint pain as more burdensome, and frequent urination, high blood pressure, liver cysts, and hematuria as less burdensome, compared with physicians' impressions. CONCLUSION: The results of this survey study demonstrate a disconnect between patients' experiences and physicians' awareness of the burden of ADPKD and highlight the need for more patient/physician discussion of symptoms and disease management.

Early Sport Specialization and Subjective Hip and Groin Dysfunction in Collegiate Ice Hockey Athletes.

CONTEXT: Sport specialization is a popular trend among youth athletes that has been associated with an increased risk for developing lower extremity overuse injuries. Early ice hockey specialization may contribute to the high rates of noncontact and overuse hip and groin injuries in collegiate ice hockey athletes. OBJECTIVE: To examine the effects of high, moderate, and low levels of sport specialization on subjective hip and groin dysfunction in collegiate ice hockey athletes. DESIGN: Retrospective cohort study. SETTING: Data were collected during the midseason of the 2018-2019 hockey season at a local ice hockey arena. PATIENTS OR OTHER PARTICIPANTS: National Collegiate Athletic Association Division III and club ice hockey players from Midwestern college programs (n = 187; 81 women, 106 men). MAIN OUTCOME MEASURE(S): Participants were stratified into high-, moderate-, and low-specialization groups based on ice hockey participation before grade 9 of high school. The 6 subscales of the Hip and Groin Outcome Score questionnaire were used to assess current subjective hip and groin dysfunction. RESULTS: The high-specialization group had lower scores than the low-specialization group on the Symptoms (P = .001), Pain (P = .003), Activities of Daily Living (P = .001), Sport and Recreation (P = .014), and Quality of Life (P = .002) subscales. The moderate-specialization group had lower scores than the low-specialization group on the Symptoms (P = .015) and Activities of Daily Living (P = .006) subscales. CONCLUSIONS: Collegiate ice hockey athletes who were highly specialized before high school reported greater current hip and groin pain, symptoms, and dysfunction during activities of daily living and sport and recreation and lower current hip- and groin-related quality of life compared with low-specialization ice hockey athletes. Early ice hockey specialization may be detrimental to hip and groin function in collegiate ice hockey athletes.

Making medicines safer: analysis of patient reports to the UK's Yellow Card Scheme.

Objectives: No studies describing UK patient Yellow Card reports have been published since the evaluation of the first two years of direct patient reporting (2005-7), when 5,180 reports were analyzed.Methods: Patient Yellow Card reports submitted July-December 2015 for vaccines and other drugs were analyzed. Comparisons to the initial evaluation were made of: reporting method, number of suspect drugs, proportion classed as serious. Factors affecting seriousness of reports were examined.Results: There were 3,060 patient Yellow Card reports analyzed. Vaccine reports have increased from very few in 2005-7 to 25% of reports. The proportion of reports citing one drug (94.3%) and the proportion considered serious (70.3%) increased from the 84% and 58% respectively found in 2005-7. The main method of reporting had changed from paper (61%) to internet (88.5%). Serious reports were more common in females, for vaccines in young persons, but in adults for other drugs, and included more reaction terms than non-serious reports.Conclusion: Patient reporting, in particular to vaccines, has increased dramatically since 2005-7. Increases in the proportion of reports concerning one drug and the proportion considered serious could indicate that the usability of patient reports may have improved in comparison to early reporting.

The effect of adjuvant chemotherapy on symptom burden and quality of life over time; a preliminary prospective observational study using individual data of patients aged ≥70 with early stage invasive breast cancer.

OBJECTIVES: We aim to assess short and long term effects of chemotherapy on patient-reported quality of life (QOL) and patient versus clinician symptom reporting in older patients with breast cancer adjusted for tumour and aging parameters. MATERIAL AND METHODS: In this prospective, multicentre, non-interventional, observational study, women aged ≥70years were enrolled after surgery and assigned to a TC chemotherapy (docetaxel and cyclophosphamide) group or a control group depending on their planned adjuvant treatment. Longitudinal multivariate models were used to assess the statistical and minimal clinically important difference (MCID) in the impact of TC chemotherapy over time on QOL and symptom burden adjusted for baseline aging and tumour parameters. Statistical significance was set at 5% and MCID at 10 points. RESULTS: In total, 57 patients were enrolled in the chemotherapy and 52 patients in the control group. Within the chemotherapy group, clinical deterioration was reported at 3months for Fatigue (17.73), Dyspnoea (17.05), Diarrhoea (12.06) and Appetite Loss (17.05) scores (all p<0.001). However, the scores had returned to baseline (or even better for Role Functioning) at year 1. No clinical deterioration was reported in the control group. Symptom scores as reported by patients were significantly (p<0.05) higher than those reported by the clinicians, even more so for Fatigue, Dyspnoea, and Pain. CONCLUSION: Our results show that symptom burden and diminished QOL in an older breast cancer population receiving adjuvant TC chemotherapy are short-lived and disappear after a while with no long-term differences compared to a similar population not receiving chemotherapy.

Patient- and person-reports on healthcare: preferences, outcomes, experiences, and satisfaction - an essay.

With the shift towards patient-centered healthcare, patient- and person-reports of health-related factors, including outcomes, are seen as important determinants for evaluating and improving healthcare. However, a comprehensive, systematic categorization of patient- and person-reports is currently lacking in the literature. This study aims at developing a new classification system with well-defined constructs for patients' and persons' self-reports on health and healthcare. A literature research and evaluation by the Reported Health Outcomes (RHO) Group were used to develop this classification system. The new classification system includes patient- and person-reported preferences, outcomes, experiences, and satisfaction related to healthcare and health outcomes. Moreover, the most constitutive methods to measure these four categories - preferences, outcomes, experiences, and satisfaction - have been described in this article. Even though the value of patients' and persons' perspectives on healthcare is increasingly being recognized, its measurement and implementation presents a lasting challenge to researchers, clinicians, patients, and the general population.

Shortening a Patient Experiences Survey for Medical Homes.

The Consumer Assessment of Healthcare Providers and Systems-Patient-Centered Medical Home (CAHPS PCMH) Survey assesses patient experiences reflecting domains of care related to general patient experience (access to care, communication with providers, office staff interaction, provider rating) and PCMH-specific aspects of patient care (comprehensiveness of care, self-management support, shared decision making). The current work compares psychometric properties of the current survey and a proposed shortened version of the survey (from 52 to 26 adult survey items, from 66 to 31 child survey items). The revisions were based on initial psychometric analysis and stakeholder input regarding survey length concerns. A total of 268 practices voluntarily submitted adult surveys and 58 submitted child survey data to the National Committee for Quality Assurance in 2013. Mean unadjusted scores, practice-level item and composite reliability, and item-to-scale correlations were calculated. Results show that the shorter adult survey has lower reliability, but still it still meets general definitions of a sound survey for the adult version, and resulted in few changes to mean scores. The impact was more problematic for the pediatric version. Further testing is needed to investigate approaches to improving survey response and the relevance of survey items in informing quality improvement.

Do claims-based continuity of care measures reflect the patient perspective?

Continuity of care (CoC) is a cornerstone of the patient-centered medical home (PCMH) and one of the primary means for achieving health care quality. Despite decades of study, however, CoC remains difficult to define and quantify. To incorporate patient experiences into health reform evaluations, it is critical to determine if and how well CoC measures traditionally derived from administrative claims capture patient experiences. In this study, we used claims data and self-reported continuity experiences of 2,620 Medicare beneficiaries who completed the National Health and Health Services Use Questionnaire to compare 16 claims-based CoC indices to a multidimensional patient-reported CoC measure. Our results show that most claims-based CoC measures do not reflect older adults' perceptions of continuous patient-provider relationships, indicating that claims-based assessments should be used in tandem with patient reports for defining, quantifying, and evaluating CoC in health care delivery models.