Relational use of an electronic quality of life and practice support system in hospital palliative consult care: a pilot study

Objectives: This study is part of an overarching research initiative on the development and integration of an electronic Quality of Life and Practice Support System (QPSS) that uses patient-reported outcome and experience measures in clinical practice. The current study focused on palliative nurse consultants trialing the QPSS with older hospitalized adults receiving acute care. The primary aim of the study was to better understand consultants’ and patients’ experiences and perspectives of use. Method: The project involved two nurse specialists within a larger palliative outreach consult team (POCT) and consenting older adult patients (age 55+) in a large tertiary acute care hospital in western Canada. User-centered design of the QPSS was informed by three focus groups with the entire POCT team, and implementation was evaluated by direct observation as well as interviews with the POCT nurses and three patients. Thematic analysis of interviews and field notes was informed by theoretical perspectives from social sciences. Result: Over 9 weeks, the POCT nurses used the QPSS at least once with 20 patients, for a total of 47 administrations. The nurses most often assisted patients in using the QPSS. Participants referenced three primary benefits of relational use: enhanced communication, strengthened therapeutic relations, and cocreation of new insights about quality of life and care experiences. The nurses also reported increased visibility of quality of life concerns and positive development as relational care providers. Significance of results: Participants expressed that QPSS use positively influenced relations of care and enhanced practices consistent with person-centered care. Results also indicate that electronic assessment systems may, in some instances, function as actor-objects enabling new knowledge and relations of care rather than merely as a neutral technological platform. This is the first study to examine hospital palliative consult clinicians’ use of a tablet-based system for routine collection of patient-reported outcome and experience measures

Integrating quality of life assessments in student clinical learning experience / Intégration d’une évaluation de la qualité de vie dans les situations d’apprentissage clinique des étudiantes

Healthcare organizations and governments increasingly emphasize the importance of viewing patients and families as equal members of the care team, with the right to participate in decisions affecting their care. In order to support the imperatives of person-centred care, Quality of Life (QOL) assessments are utilized more as part of routine clinical care. QOL assessments involve the use of standardized, validated questionnaires completed by patients to assess their health and quality of life from their own point of view. In an effort to support transformational learning about QOL assessments, fourth-year students in a BSN program completed an assignment that involved using two QOL assessment instruments as part of a course on Nursing Care of Complex Illness; the McGill Quality of Life Revised instrument (MQOL-R) and the Edmonton Symptom Assessment System Revised (ESAS-R). Each student invited a patient with life-limiting illness to complete the two instruments, discuss the results with their patient, and identify potential interventions that would address the priorities that correspond with patient-identified areas of concern. They were then required to write a reflective paper on their experience. Analysis of the students’ reflections was guided by the qualitative methodology of interpretive description. The following six thematic patterns were identified: (a) student expectations and patient responses, (b) comfort level using QOL assessment instruments, (c) therapeutic person-centred communication, (d) putting the patient first – prioritizing care from the patients’ point of view, (e) insight into the lived experience of patients, and (f) use of nurses’ time. This study provides preliminary guidance based on student perspectives regarding the inclusion of QOL assessments in nursing education. Résumé Les établissements de santé et les gouvernements insistent de plus en plus sur l’importance de considérer les patients et leur famille comme des membres à part entière de l’équipe de soins, chacun ayant le droit de participer aux décisions relatives à ses soins. Afin de répondre aux impératifs des soins centrés sur la personne, les questionnaires sur la qualité de vie sont davantage utilisés dans le cadre des soins cliniques courants. Il s’agit d’outils standardisés et validés remplis par les patients pour analyser la perception qu’ils ont de leur qualité de vie et de leur état de santé. Afin de favoriser un apprentissage transformationnel concernant l’ évaluation de la qualité de vie, les étudiantes de quatrième année d’un programme de baccalauréat en sciences infirmières ont été amenées à faire un travail impliquant l’utilisation de deux outils d’analyse de la qualité de vie, dans le cadre d’un cours portant sur les soins aux personnes atteintes de maladies chroniques complexes : la version révisée du questionnaire McGill sur la qualité de vie (MQOL-r) et la version révisée de l’échelle d’évaluation des symptômes d’Edmonton (EESE-r). Chaque étudiante a demandé à un patient atteint d’une maladie limitant l’espérance de vie de remplir les deux questionnaires, de discuter des résultats et de déterminer les interventions possibles qui répondraient aux priorités découlant de ses préoccupations. Par la suite, les étudiantes devaient rédiger un travail réflexif sur leur expérience. L’analyse des textes réflexifs des étudiantes a été faite selon une méthodologie qualitative, résultant en une description interprétative. Les six thèmes récurrents suivants ont été identifiés : (a) les attentes de l’étudiante et les réponses du patient, (b) l’habileté à utiliser les questionnaires d’évaluation de la qualité de vie, (c) la communication thérapeutique centrée sur la personne, (d) la priorité au patient en favorisant les soins selon son point de vue, (e) la compréhension de l’expérience vécue du patient et (f) la gestion du temps de travail des infirmières. Cette étude fournit des orientations préliminaires fondées sur la perspective des étudiantes concernant l’inclusion de l’évaluation de la qualité de vie dans la formation en sciences infirmières

Micro-meso-macro practice tensions in using patient-reported outcome and experience measures in hospital palliative care

This article applies a micro-meso-macro analytical framework to understand clinicians’ experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients’ and their family caregivers’ quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians’ use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice

Host Agency Perspectives on Facilitating Community-Based Clinical Experiences for Nursing Students

Nurse educators have developed many innovations for nursing education in response to the current shortage of clinical placements. Nursing programs are increasingly relying on placements in community-based agencies (some of which are not health agencies) and university-agency collaborations are being developed to enhance capacity for student placements. Our interest in this qualitative study was to elicit the perspectives of host agencies in these alternate sites regarding hosting undergraduate student clinical placements. Aims were to gain insight about (1) how community-based host agencies decide to host students, including how the number of students hosted is determined; (2) the nature of agency-university partnerships; and (3) the agency’s experiences of hosting students in relation to benefits and issues that accompany hosting students. Administrators from twenty-five community-based agencies that hosted undergraduate nursing students from the researchers’ university were invited to participate in an online survey or telephone interview, with a final sample size of eighteen respondents. Each participant was given the option of a telephone interview but most elected to complete the online survey because of its flexibility; five participants were interviewed on the phone and 13 completed the open-ended survey questions online. Findings revealed that host agency decisions to host students could have an ad hoc nature to them, and were described as contingent on various explicit and implicit factors such as staff availability, the perceived contribution of students, or a philosophic commitment to contribute to student education. Smaller agencies reported and preferred informal partnerships with the educational institutions because they were perceived to be more flexible, and all sites emphasized the need for increased, improved communication with clinical instructors and more direct supervision of student placements by the educational unit. The benefits of hosting student nurses were described as outweighing the issues and challenges. The study also revealed incongruities between the perspectives of these host agencies and typically-held views of nursing programs, whereby host agencies spoke of the “ideal student” and nursing programs tend to seek an “ideal placement”. Further research is needed to generate knowledge about expanding capacity for clinical placements, enhancing partnerships, and enriching student learning outcomes. Résumé Compte tenu de la pénurie de places de stages cliniques, les professeures en sciences infirmières ont développé plusieurs innovations en formation infirmière. Les programmes de sciences infirmières comptent de plus en plus sur les stages au sein d’organismes communautaires (certains ne sont pas des organismes de santé) et les universités favorisent des partenariats avec ces organismes afin d’accroître la capacité d’accueil de stagiaires. Cette étude qualitative visait à décrire les perspectives d’organismes hôtes dans ces sites alternatifs concernant l’accueil d’étudiantes de premier cycle dans le cadre de stages cliniques. Les objectifs étaient de mieux comprendre : (1) comment les organismes communautaires hôtes prennent la décision d’accueillir des étudiantes dans le cadre de stages cliniques et comment ils déterminent le nombre d’étudiantes qui seront accueillies; (2) la nature des partenariats organisme-université; et (3) les expériences de l’organisme en ce qui concerne l’accueil des étudiantes, plus particulièrement les avantages et les problèmes liés à l’accueil des étudiantes. Des administrateurs de vingt-cinq organismes communautaires, qui ont accueilli des étudiantes en sciences infirmières de l’université d’attache des chercheurs, ont été invités à participer à un sondage en ligne ou à une entrevue téléphonique. La taille de l’échantillon final était de dix-huit participants. La plupart des participants ont opté pour le sondage en ligne à cause de sa flexibilité; cinq participants ont répondu à une entrevue téléphonique et treize ont complété le sondage en ligne qui comportait des questions ouvertes. Les résultats indiquent que les organismes hôtes décident d’accueillir des étudiantes en stage afin de répondre à des besoins spécifiques, et la décision dépend de plusieurs facteurs explicites et implicites, tels que la disponibilité du personnel, la perception de la contribution des étudiantes, ou un engagement philosophique à contribuer à la formation d’étudiantes. Les plus petits organismes ont indiqué qu’ils préfèrent les partenariats informels avec les établissements de formation car ils les perçoivent comme étant plus souples. Tous les sites ont souligné le besoin de communications plus fréquentes et améliorées avec les enseignantes cliniques et de supervision plus directe des stages des étudiantes par l’unité d’enseignement. Les avantages d’accueillir des étudiantes étaient décrits par les organismes hôtes comme dépassant les inconvénients ou les défis. L’étude a aussi révélé des incongruités entre les perspectives des organismes hôtes et celles des programmes de sciences infirmières : les organismes hôtes décrivent ce que serait un « étudiante idéale» et les programmes de sciences infirmières souhaitent trouver le « stage idéal ». D’autres recherches seront nécessaires afin de générer des connaissances sur l’augmentation de la capacité d’accueil de stagiaires, l’amélioration des partenariats, et l’enrichissement des résultats d’apprentissage des étudiantes

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation

Program assessment framework for a rural palliative supportive service

Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation

Validating health conditions in a clinical registry using administrative data algorithms

Introduction Clinical registries are a potentially valuable resource to study the effects of medical interventions on outcomes, particularly patient-reported outcomes like health-related quality of life, which are not included in administrative data. However, because clinical registries are primarily intended for patient management and not for research, their validity must be established. Objectives and Approach Our objective was to validate patient self-reported health conditions in a clinical registry. Study data were from a population-based regional joint replacement registry in the Canadian province of Manitoba. The clinical registry data were linked to administrative health data. Validated administrative data algorithms for 12 conditions were defined using diagnosis codes in hospital and physician records and medication codes in prescription drug records for the period up to three years prior to the joint replacement surgery. Accuracy of the clinical registry data was estimated using Cohen’s kappa coefficient, sensitivity, specificity, and positive and negative predictive values (PPV; NPV); 95% confidence intervals were also estimated. Analyses were stratified by joint type, age group, and sex. Results The study cohort included 20,592 individuals (average age 66.3 years; 58.4% female); 8,424 (40.9%) had a total hip replacement. Sensitivity of the clinical registry data ranged from 16% (anemia) to more than 70% (diabetes, high blood pressure, rheumatoid arthritis); specificity was greater than 92% for all conditions, except back pain and high blood pressure. PPV ranged from 19% (back pain) to 83% (diabetes). Chance-adjusted agreement was very good for diabetes (kappa: 0.74), moderate for heart disease and high blood pressure (kappa range: 0.41-0.53) and poor or fair for back pain, anemia, cancer, depression, kidney disease, liver disease, rheumatoid arthritis and stomach ulcers (kappa range: 0.14-0.37). Estimates varied by sex (i.e., generally higher agreement for females) and age (i.e., generally lower agreement for older age groups), but not joint type. Conclusion/Implications Self-reported health conditions in registry data had good validity for conditions with clear diagnostic criteria, but low validity for conditions that are difficult to diagnose or rare (e.g., cancer). Linked registry and administrative data is strongly recommended to ensure valid and accurate comorbidity measures when developiong risk prediction models and conducting inter-jurisdictional comparisons of patient-reported outcome measures

Mechanism of Sphingosine 1-Phosphate- and Lysophosphatidic Acid-Induced Up-Regulation of Adhesion Molecules and Eosinophil Chemoattractant in Nerve Cells

The lysophospholipids sphingosine 1-phosphate (S1P) and lysophosphatidic acid (LPA) act via G-protein coupled receptors S1P1–5 and LPA1–3 respectively, and are implicated in allergy. Eosinophils accumulate at innervating cholinergic nerves in asthma and adhere to nerve cells via intercellular adhesion molecule-1 (ICAM-1). IMR-32 neuroblastoma cells were used as an in vitro cholinergic nerve cell model. The Gi coupled receptors S1P1, S1P3, LPA1, LPA2 and LPA3 were expressed on IMR-32 cells. Both S1P and LPA induced ERK phosphorylation and ERK- and Gi-dependent up-regulation of ICAM-1 expression, with differing time courses. LPA also induced ERK- and Gi-dependent up-regulation of the eosinophil chemoattractant, CCL-26. The eosinophil granule protein eosinophil peroxidase (EPO) induced ERK-dependent up-regulation of transcription of S1P1, LPA1, LPA2 and LPA3, providing the situation whereby eosinophil granule proteins may enhance S1P- and/or LPA- induced eosinophil accumulation at nerve cells in allergic conditions