scholarly journals Translating the Science of Patient Reported Outcomes into Practice: Meaningfulness of HM-PRO Scores in Patients with Hematological Malignancies

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4860-4860 ◽  
Author(s):  
Pushpendra Goswami ◽  
Esther Natalie Oliva ◽  
Tatyana Ionova ◽  
Sam Salek

Abstract Introduction: Patient-reported outcome (PRO) measures not only have been widely used in clinical research but also increasingly employed in daily clinical practice to understand the health outcomes of medical interventions. A novel hematological malignancy (HM) specific PRO tool, HM-PRO, has been recently developed for use in daily clinical practice. The HM-PRO is a composite measure consisting of two scales: Part A - measuring the 'impact on patients' quality of life (QoL); and Part B-measuring the effect of 'signs and symptoms' experienced by the patients. Both scales have linear scoring system ranging from 0 to 100, with higher scores representing greater impact on QoL and symptom burden. The assessment of the "meaningfulness" of HM-PRO scores is essential if clinicians are to be able to use the instrument to understand patient health outcomes to aid their clinical decision-making and encourage better patient engagement. One way of enhancing the clinical utility of scores on multi-item questionnaires is by investigating the importance (to patients and clinicians) of cross-sectional differences by anchoring those differences and changes to clinically familiar events that are related to patient well-being. The aims of the present study were to determine the relationship between the HM-PRO scores and a Global Question (GQ) measuring the impact on a patient's life from patients' perspective and to identify bands of HM-PRO scores equivalent to each GQ descriptor, reflecting patients' global rating of PROs. Methods: In this multicenter cross-sectional study, 905 patients: male 486; mean age 64.3 (±12.4, years; mean time since diagnosis 4.6 (±5.2) years; with different HM's ( acute lymphoblastic leukemia n=29, acute myeloid leukemia n=67, aggressive non Hodgkin lymphoma n=54, chronic lymphocytic leukemia n=64, chronic myeloid leukemia n=45, Hodgkin lymphoma n=37, indolent non Hodgkin lymphoma n=41, myelodysplastic syndrome n=158, multiple myeloma n=296, and myeloproliferative neoplasm n=114); in different disease states (stable-399, remission-277, and progressing - 229) were recruited from seven secondary hospitals and five patient organizations in the UK. All patients were asked to complete the HM-PRO and answer the global question as an anchor. Anchor-based differences were determined cross-sectionally (differences between clinically-defined groups at one time point) to determine clinically important differences in scores. The data analysis was carried out using IBM SPSS 23, a statistical software. Results: The mean HM-PRO score for Part A was 31.7 (±21.6) with median of 28.3 (IQR 13.6-46.6), for Part B was 20.9 (±14.2) with median of 17.6 (IQR 8.8 - 29.4), and the mean GQ score was 3.2 (±1.19) with range 1-5. The mean, mode, and median of the GQ scores for each HM-PRO score for both scales of HM-PRO were used to devise the bands (Figure 1) and intra-class correlation coefficient (ICC) was calculated for level of agreement. The set of scores proposed for adoption included: for Part A HM-PRO scores 0-7 = 'no impact' on patients' QoL (GQ=1, n=64), scores 8-25 = 'a small impact' on patients' QoL (GQ=2, n=133), scores 26-41 = 'moderate impact' on patients' QoL (GQ=3, n=97), scores 42-74 = 'very large impact' on patients' QoL (GQ=4, n=111), and scores 75-100 = 'extremely large impact' on patients' QoL (GQ=5, n=18), with ICC =0.80 (95% CI-0.77 - 0.83); for Part B HM-PRO scores 0-3 = 'no effect' of signs and symptoms on patient's life (GQ=1, n=56), scores 4-16 = 'a small effect' of signs and symptoms on patient's life (GQ=2, n=133), scores 17-29 = 'a moderate effect' of signs and symptoms on patient's life (GQ=3, n=122), scores 30-65 = 'very large effect' of signs and symptoms on patient's life (GQ=4, n=104), and scores 66-100 = 'extremely large effect' of signs and symptoms on patient's life (GQ=5, n=3), with ICC =0.75 (95% CI- 0.71-0.78), respectively (Table 1). Conclusion: This study employed the anchor-based approach for devising a set of score banding for both Part A and Part B of HM-PRO. The proposed bands (Part A=0-7, 8-25, 26-41, 42-74, 75-100; Part B=0-3, 4-16, 17-29, 30-65, 66-100) had the highest agreement and number of patients in the individual bands. The proposed bands could be applied independent of gender and different age groups. The findings of this study will help the clinician and the care team to interpret the HM-PRO scores to aid their clinical decision-making process in daily routine practice. Disclosures Oliva: Sanofi: Consultancy, Speakers Bureau; Celgene: Consultancy, Other: Royalties, Speakers Bureau; La Jolla: Consultancy; Amgen: Consultancy, Speakers Bureau; Novartis: Consultancy, Speakers Bureau; Janssen: Consultancy, Speakers Bureau. Ionova:Takeda: Research Funding; BMS: Research Funding.

2013 ◽  
Vol 137 (11) ◽  
pp. 1599-1602 ◽  
Author(s):  
Sara Lankshear ◽  
John Srigley ◽  
Thomas McGowan ◽  
Marta Yurcan ◽  
Carol Sawka

Context.—Cancer Care Ontario implemented synoptic pathology reporting across Ontario, impacting the practice of pathologists, surgeons, and medical and radiation oncologists. The benefits of standardized synoptic pathology reporting include enhanced completeness and improved consistency in comparison with narrative reports, with reported challenges including increased workload and report turnaround time. Objective.—To determine the impact of synoptic pathology reporting on physician satisfaction specific to practice and process. Design.—A descriptive, cross-sectional design was utilized involving 970 clinicians across 27 hospitals. An 11-item survey was developed to obtain information regarding timeliness, completeness, clarity, and usability. Open-ended questions were also employed to obtain qualitative comments. Results.—A 51% response rate was obtained, with descriptive statistics reporting that physicians perceive synoptic reports as significantly better than narrative reports. Correlation analysis revealed a moderately strong, positive relationship between respondents' perceptions of overall satisfaction with the level of information provided and perceptions of completeness for clinical decision making (r = 0.750, P < .001) and ease of finding information for clinical decision making (r = 0.663, P < .001). Dependent t tests showed a statistically significant difference in the satisfaction scores of pathologists and oncologists (t169 = 3.044, P = .003). Qualitative comments revealed technology-related issues as the most frequently cited factor impacting timeliness of report completion. Conclusion.—This study provides evidence of strong physician satisfaction with synoptic cancer pathology reporting as a clinical decision support tool in the diagnosis, prognosis, and treatment of cancer patients.


2003 ◽  
Vol 23 (6) ◽  
pp. 550-556 ◽  
Author(s):  
Mark Wright ◽  
Graham Woodrow ◽  
Siobahn O'Brien ◽  
Neil King ◽  
Louise Dye ◽  
...  

Objective Malnutrition is common among peritoneal dialysis (PD) patients. Reduced nutrient intake contributes to this. It has long been assumed that this reflects disturbed appetite. We set out to define the appetite profiles of a group of PD patients using a novel technique. Design Prospective, cross-sectional comparison of PD patients versus controls. Setting Teaching hospital dialysis unit. Patients 39 PD patients and 42 healthy controls. Intervention Visual analog ratings were recorded at hourly intervals to generate daily profiles for hunger and fullness. Summary statistics were generated to compare the groups. Food intake was measured using 3-day dietary records. Main Outcome Measures Hunger and fullness profiles. Derived hunger and fullness scores. Results Controls demonstrated peaks of hunger before mealtimes, with fullness scores peaking after meals. The PD profiles had much reduced premeal hunger peaks. A postmeal reduction in hunger was evident, but the rest of the trace was flat. The PD fullness profile was also flatter than in the controls. Mean scores were similar despite the marked discrepancy in the profiles. The PD group had lower peak hunger and less diurnal variability in their hunger scores. They also demonstrated much less change in fullness rating around mealtimes, while the mean and peak fullness scores were little different. The reported nutrient intake was significantly lower for PD. Conclusion The data suggest that PD patients normalize their mean appetite perception at a lower level of nutrient intake than controls, suggesting that patient-reported appetite may be misleading in clinical practice. There is a loss of the usual daily variation for the PD group, which may contribute to their reduced food intake. The technique described here could be used to assess the impact of interventions upon the abnormal PD appetite profile.


2019 ◽  
Vol 104 (9) ◽  
pp. 3812-3820 ◽  
Author(s):  
Dipti Rao ◽  
Anouk van Berkel ◽  
Ianthe Piscaer ◽  
William F Young ◽  
Lucinda Gruber ◽  
...  

Abstract Context Cross-sectional imaging with CT or MRI is regarded as a first-choice modality for tumor localization in patients with pheochromocytoma and paraganglioma (PPGL). 123I-labeled metaiodobenzylguanidine (123I-MIBG) is widely used for functional imaging but the added diagnostic value is controversial. Objective To establish the virtual impact of adding 123I-MIBG scintigraphy to CT or MRI on diagnosis and treatment of PPGL. Design International multicenter retrospective study. Intervention None. Patients Two hundred thirty-six unilateral adrenal, 18 bilateral adrenal, 48 unifocal extra-adrenal, 12 multifocal, and 26 metastatic PPGL. Main Outcome Measures Patients underwent both anatomical imaging (CT and/or MRI) and 123I-MIBG scintigraphy. Local imaging reports were analyzed centrally by two independent observers who were blinded to the diagnosis. Imaging-based diagnoses determined by CT/MRI only, 123I-MIBG only, and CT/MRI combined with 123I-MIBG scintigraphy were compared with the correct diagnoses. Results The rates of correct imaging-based diagnoses determined by CT/MRI only versus CT/MRI plus 123I-MIBG scintigraphy were similar: 89.4 versus 88.8%, respectively (P = 0.50). Adding 123I-MIBG scintigraphy to CT/MRI resulted in a correct change in the imaging-based diagnosis and ensuing virtual treatment in four cases (1.2%: two metastatic instead of nonmetastatic, one multifocal instead of single, one unilateral instead of bilateral adrenal) at the cost of an incorrect change in seven cases (2.1%: four metastatic instead of nonmetastatic, two multifocal instead of unifocal and one bilateral instead of unilateral adrenal). Conclusions For the initial localization of PPGL, the addition of 123I-MIBG scintigraphy to CT/MRI rarely improves the diagnostic accuracy at the cost of incorrect interpretation in others, even when 123I-MIBG scintigraphy is restricted to patients who are at risk for metastatic disease. In this setting, the impact of 123I-MIBG scintigraphy on clinical decision-making appears very limited.


2021 ◽  
Vol 36 (1) ◽  
pp. e213-e213
Author(s):  
Amna Al Harrasi ◽  
Laila Mohammed Al Mbeihsi ◽  
Abdulhakeem Al Rawahi ◽  
Mohammed Al Shafaee

Objectives: The use of mobile technologies and handheld computers by physicians has increased worldwide. However, there are limited studies globally regarding training physicians on the use of such devices in clinical practice. In addition, no studies have been conducted previously in Oman addressing this issue among postgraduate medical trainees and trainers. The present study explores the practice and perception of resident doctors and trainers towards the use of mobile technologies and handheld devices in healthcare settings in Oman. Methods: This cross-sectional study was conducted using a validated questionnaire disseminated via email to all residents and trainers in five major training programs of the Oman Medical Specialty Board (OMSB). The questionnaire explored three main areas; perception, usage, and perceived barriers of handheld devices. Results: Overall, 61.4% of the residents and 28.3% of the trainers responded to the questionnaire. Both types of participants agreed that the use of such devices positively affects clinical decision-making. In total, 98.8% of the participating residents and 86.7% of the trainers frequently used handheld devices. Both OMSB residents and trainers agreed that lack of time, training, and applications were the most common factors limiting the use of these devices. Participants emphasized the need for constructive training regarding the use of handheld devices as healthcare resources. Conclusions: Point-of-care devices are positively perceived and frequently used by OMSB trainees and trainers. However, constructive training on the effective usage of these devices in clinical decision-making is needed. Further future studies to evaluate the impact of using such devices in patient care should be conducted.


2020 ◽  
Vol 100 (7) ◽  
pp. 1074-1083
Author(s):  
Caitlyn Holloway ◽  
Neeti Pathare ◽  
Jean Huta ◽  
Dana Grady ◽  
Andrea Landry ◽  
...  

Abstract Objective Guidelines following median sternotomy typically include strict sternal precautions (SP). Recently, alternative approaches propose less functional restrictions while avoiding excessive stress to the sternum. The study aimed to determine the effect of a less restrictive (LR) approach versus a standard SP protocol after median sternotomy. Methods The study was a cross-sectional design (n = 364; SP: n = 172, 66.3 [SD = 11.2] years; LR: n = 196, 65.2 [SD = 11.2] years). This study ran in 2 consecutive phases and compared 2 groups after median sternotomy at a community-based hospital. The LR group received instructions on the Keep Your Move in the Tube approach. At 2 to 3 weeks after discharge, sternal instability was assessed using the Sternal Instability Scale, and patients completed a self-reported survey (perceived pain rating/frequency, sternal instability, and functional mobility). The 2 groups were compared using the Mann-Whitney U test and chi-square test (P < .05). Results There were no significant differences between the 2 groups for all the outcomes, Sternal Instability Scale, pain rating, pain frequency, perceived sternal instability, difficulty with functional mobility, length of stay, and discharge disposition. Conclusions In our study, the implementation of the LR approach, Keep Your Move in the Tube, had no adverse effect on outcomes 2 to 3 weeks following median sternotomy. Although no statistically significant differences were noted for all outcomes, patients with the LR approach reported less difficulty with functional mobility. Impact Statement These data are useful in clinical decision-making regarding alternative approaches for mobility following sternotomy.


2020 ◽  
Author(s):  
Uiara Raiana Vargas de Castro Oliveira Ribeiro ◽  
Liliane Mayumi Swiech ◽  
Waldir Souza ◽  
Úrsula Bueno do Prado Guirro ◽  
Carla Corradi-Perini

Abstract Background: moral-uncertainty-distress (MUD) is defined as moral distress related to moral conflict about best course of action, impacting the clinical decision making process in morally complex situations. This study aims to correlate physician’s perception about advance directives (AD) with presence or absence of MUD, identifying the impact that AD promotes on clinical decision making.Methods: this is a qualitative, cross-sectional, exploratory study. Data was collected through semi-structured interviews with physicians of a hospital in southern Brazil. Interviews content was submitted to categorization analysis content technique by Laurence Bardin.Results: eight physicians were interviewed. The analysis contend identified two categories: (1) AD as a morally challenging element and (2) recognition of AD as instruments that exercises patient’s autonomy. In the first, paternalistic attitude; insecurities in uncertain prognoses; uncertainty about patient values and motivations to write the document; and little previous knowledge about AD, were elements of MUD for physicians. In second category, autonomy in AD was seen as prima facie principle and as shared autonomy.Conclusion: although AD were comprehended as instruments of exercise of patient’s autonomy by the participants, some elements were morally challenging for them, which can be a source of MUD to physician during decision making process.


2021 ◽  
Author(s):  
Mojgan Najafi ◽  
Mehdi Ajri ◽  
Mansoureh Karimollahi

Abstract Background and aim: Vigilance is an essential element in intensive care nursing. This study was conducted to determine nursing vigilance in nurses working in the intensive care units of educational and medical centers in Ardabil, IranMethods: This was a cross-sectional descriptive-analytical study with 192 ICU nurses as the participants. The data were obtained through questionnaires regarding demographic characteristics and nursing vigilance. SPSS software version 24 was used for the statistical analysis.Results: The mean total vigilance score was 3.86 ± 0.23 of 5. The mean scores of the timely diagnosis of changes, pattern recognition, and clinical decision-making subscales were 4.07 ± 0.26, 04.04 ± 0.41, and 3.44 ± 0.25, respectively. No significant relationships were observed between the total or subscale vigilance scores and other demographic characteristics.Conclusion: We assessed ICU nurses’ vigilance behaviors and found that their mean vigilance score was higher than the expected average, indicating our participants had a high level of clinical vigilance. These results suggest a need for effective educational interventions to boost clinical decision-making skills in ICU nurses, especially younger nurses.


2016 ◽  
pp. 59-65 ◽  
Author(s):  
Van Mao Nguyen

Background: Lymphoma is one of the most ten common cancers in the world as well as in Vietnam which has been ever increasing. It was divided into 2 main groups Hodgkin and non – Hodgkin lymphoma in which non-Hodgkin lymphoma appeared more frequency, worse prognosis and different therapy. Objectives: - To describe some common characteristics in patients with non – Hodgkin lymphoma; - To determine the proportion between Hodgkin and non- Hodgkin lymphoma, histopathological classification of classical Hodgkin by modified Rye 1966 and non-Hodgkin lymphoma by Working Formulation (WF) of US national oncology institute 1982. Materials and Method: This cross-sectional study was conducted on 65 patients with Hodgkin and non- Hodgkin lymphoma diagnosed definitely by histopathology at Hue Central Hospital and Hue University Hospital. Results:. The ratio of male/female for the non-Hodgkin lymphoma was 1.14/1, the most frequent range of age was 51-60 accounting for 35%, not common under 40 years. Non - Hodgkin lymphoma appeared at lymph node was the most common (51.7%), at the extranodal site was rather high 48.3%. The non - Hodgkin lymphoma proportion was predominant 92.3% comparing to the Hodgkin lymphoma only 7.7%; The most WF type was WF7 (53.3%), following the WF6 18,3% and WF5 11,7%; The intermediate malignancy grade of non- Hodgkin lymphoma was the highest proportion accouting for 85%, then the low and the high one 8.3% and 6.7% respectively. Conclusion: The histopathological classification and the malignant grade of lymphoma for Hodgkin and non - Hodgkin lymphoma played a practical role for the prognosis and the treatment orientation, also a fundamental one for the modern classification of non - Hodgkin lymphoma nowadays. Key words: lymphoma, Hodgkin lymphoma, non-Hodgkin lymphoma, classication, grade, histopathology, lymph node


Author(s):  
Jeff Levin ◽  
Stephen G. Post

In Religion and Medicine, Dr. Jeff Levin, distinguished Baylor University epidemiologist, outlines the longstanding history of multifaceted interconnections between the institutions of religion and medicine. He traces the history of the encounter between these two institutions from antiquity through to the present day, highlighting a myriad of contemporary alliances between the faith-based and medical sectors. Religion and Medicine tells the story of: religious healers and religiously branded hospitals and healthcare institutions; pastoral professionals involved in medical missions, healthcare chaplaincy, and psychological counseling; congregational health promotion and disease prevention programs and global health initiatives; research studies on the impact of religious and spiritual beliefs and practices on physical and mental health, well-being, and healing; programs and centers for medical research and education within major universities and academic institutions; religiously informed bioethics and clinical decision-making; and faith-based health policy initiatives and advocacy for healthcare reform. Religion and Medicine is the first book to cover the full breadth of this subject. It documents religion-medicine alliances across religious traditions, throughout the world, and over the course of history. It summarizes a wide range of material of relevance to historians, medical professionals, pastors and theologians, bioethicists, scientists, public health educators, and policymakers. The product of decades of rigorous and focused research, Dr. Levin has produced the most comprehensive history of these developments and the finest introduction to this emerging field of scholarship.


2021 ◽  
Vol 10 (8) ◽  
pp. 1782
Author(s):  
Ignacio Ricci-Cabello ◽  
Aina María Yañez-Juan ◽  
Maria A. Fiol-deRoque ◽  
Alfonso Leiva ◽  
Joan Llobera Canaves ◽  
...  

We aimed to examine the complex relationships between patient safety processes and outcomes and multimorbidity using a comprehensive set of constructs: multimorbidity, polypharmacy, discordant comorbidity (diseases not sharing either pathogenesis nor management), morbidity burden and patient complexity. We used cross-sectional data from 4782 patients in 69 primary care centres in Spain. We constructed generalized structural equation models to examine the associations between multimorbidity constructs and patient-reported patient safety (PREOS-PC questionnaire). These associations were modelled through direct and indirect (mediated by increased interactions with healthcare) pathways. For women, a consistent association between higher levels of the multimorbidity constructs and lower levels of patient safety was observed via either pathway. The findings for men replicated these observations for polypharmacy, morbidity burden and patient complexity via indirect pathways. However, direct pathways showed unexpected associations between higher levels of multimorbidity and better safety. The consistent association between multimorbidity constructs and worse patient safety among women makes it advisable to target this group for the development of interventions, with particular attention to the role of comorbidity discordance. Further research, particularly qualitative research, is needed for clarifying the complex associations among men.


Sign in / Sign up

Export Citation Format

Share Document