| 1. |
- Andersson, Viktor, 1994, et al.
(författare)
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Relating person-centredness to quality-of-life assessments and patient-reported outcomes in healthcare: A critical theoretical discussion
- 2022
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Ingår i: Nursing Philosophy. - : Wiley. - 1466-7681 .- 1466-769X. ; 23:3
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Tidskriftsartikel (refereegranskat)abstract
- Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient-reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person-centredness. First, we engage with the late-modern history of the concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person-centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for.
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| 2. |
- Axelsson, Lena, et al.
(författare)
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Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers
- 2020
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Background The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. Methods The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. Results Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. Conclusions The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
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| 3. |
- Feldthusen, Caroline, 1977, et al.
(författare)
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Centredness in health care: A systematic overview of reviews
- 2022
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Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 885-901
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Tidskriftsartikel (refereegranskat)abstract
- Introduction The introduction of effective, evidence-based approaches to centredness in health care is hindered by the fact that research results are not easily accessible. This is partly due to the large volume of publications available and because the field is closely linked to and in some ways encompasses adjoining fields of research, for example, shared decision making and narrative medicine. In an attempt to survey the field of centredness in health care, a systematic overview of reviews was conducted with the purpose of illuminating how centredness in health care is presented in current reviews. Methods Searches for relevant reviews were conducted in the databases PubMed, Scopus, Cinahl, PsychINFO, Web of Science and EMBASE using terms connected to centredness in health care. Filters specific to review studies of all types and for inclusion of only English language results as well as a time frame of January 2017-December 2018, were applied. Results The search strategy identified 3697 unique reviews, of which 31 were included in the study. The synthesis of the results from the 31 reviews identified three interrelated main themes: Attributes of centredness (what centredness is), Translation from theory into practice (how centredness is done) and Evaluation of effects (possible ways of measuring effects of centredness). Three main attributes of centeredness found were: being unique, being heard and shared responsibility. Aspects involved in translating theory into practice were sufficient prerequisites, strategies for action and tools used in safeguarding practice. Further, a variety and breadth of measures of effects were found in the included reviews. Conclusions Our synthesis demonstrates that current synthesized research literature on centredness in health care is broad, as it focuses both on explorations of the conceptual basis and the practice, as well as measures of effects. This study provides an understanding of the commonalities identified in the reviews on centredness in healthcare overall, ranging from theory to practice and from practice to evaluation. Patient or Public Contribution Patient representatives were involved during the initiation of the project and in decisions about its focus, although no patient or public representatives made direct contributions to the review process.
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| 4. |
- Forsgren, Emma, 1982, et al.
(författare)
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The use of text-mining software to facilitate screening of literature on centredness in health care.
- 2023
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Ingår i: Systematic Reviews. - 2046-4053. ; 12:1
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Tidskriftsartikel (refereegranskat)abstract
- Research evidence supporting the implementation of centredness in health care is not easily accessible due to the sheer amount of literature available and the diversity in terminology and conceptualisations used. The use of text-mining functions to semi-automate the process of screening and collating citations for a review is a way of tackling the vast amount of research citations available today. There are several programmes that use text-mining functions to facilitate screening and data extraction for systematic reviews. However, the suitability of these programmes for reviews on broad topics of research, as well as the general uptake by researchers, is unclear. This commentary has a dual aim, which consists in outlining the challenges of screening literature in fields characterised by vague and overlapping conceptualisations, and to exemplify this by exploratory use of text-mining in the context of a scoping review on centredness in health care.
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| 5. |
- Hamdan Alshehri, Hanan, et al.
(författare)
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Attitudes towards death and dying among intensive care professionals: A cross-sectional design evaluating culture-related differential item functioning of the frommelt attitudes toward care of the dying instrument.
- 2023
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Ingår i: Heliyon. - 2405-8440. ; 9:8
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Tidskriftsartikel (refereegranskat)abstract
- The objective is to examine whether one of the most used instruments for measuring attitudes towards caring for dying patients, the Frommelt Attitude Toward Care of the Dying (FATCOD-B) instrument, has the same meaning across different societal contexts, as exemplified by Swedish and Saudi Arabian intensive care professionals.A cross-sectional design used the 30-item FATCOD-B questionnaire. It was distributed to intensive care professionals from Sweden and Saudi Arabia, generating a total sample of 227 participants. Ordinal logistic regression models were used to examine the differential item functioning (DIF) for each item.Up to 12 of the 30 items were found to have significant DIF values related to: (a) Swedish and Saudi Arabian intensive care professionals, (b) Swedish and Saudi Arabian registered nurses (RNs), (c) RNs' levels of experience and (d) RNs and other intensive care professionals in Saudi Arabia.The results indicate that FATCOD should be used cautiously when comparing attitudes towards death and dying across different societal and healthcare contexts.
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| 6. |
- Howard, A. Fuchsia, et al.
(författare)
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Patient-driven research priorities for patient-centered measurement
- 2024
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Ingår i: BMC HEALTH SERVICES RESEARCH. - 1472-6963. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Patient-centred measurement (PCM) emphasizes a holistic approach wherein the voices of patients are reflected in the standardized use of patient-reported outcome and experience measures and are represented throughout the continuum of measurement activities. Given the challenges of routinely integrating patient self-reports into clinical care decisions, the perspectives of all healthcare system stakeholders, especially patients, is necessary to advance the science of PCM. The purpose of the analysis we report on here was to identify patient-driven research priorities for advancing the science of PCM.Methods We analyzed data from seven focus groups that were conducted across British Columbia, Canada and that included a total of 73 patients, using qualitative inductive analysis and constant comparative methods.Results We found that the patients conveyed a desire for PCM to contribute to healthcare decisions, specifically that their individual healthcare needs and related priorities as they see them are always front and centre, guiding all healthcare interactions. The patients' commentaries highlighted intersecting priorities for research on advancing the science of PCM that would help transform care by (1) enhancing the patient-provider relationship, (2) giving voice to patients' stories, (3) addressing inclusivity, (4) ensuring psychological safety, (5) improving healthcare services and systems to better meet patient needs, and (6) bolstering healthcare system accountability.Conclusions These priorities provide direction for future research efforts that would be positioned to make progress towards better health, better care, and better use of resources for individuals and for society.
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| 7. |
- Kwon, J. Y., et al.
(författare)
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Growth mixture models: a case example of the longitudinal analysis of patient‐reported outcomes data captured by a clinical registry
- 2021
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Ingår i: BMC Medical Research Methodology. - : Springer Science and Business Media LLC. - 1471-2288. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: An assumption in many analyses of longitudinal patient-reported outcome (PRO) data is that there is a single population following a single health trajectory. One approach that may help researchers move beyond this traditional assumption, with its inherent limitations, is growth mixture modelling (GMM), which can identify and assess multiple unobserved trajectories of patients’ health outcomes. We describe the process that was undertaken for a GMM analysis of longitudinal PRO data captured by a clinical registry for outpatients with atrial fibrillation (AF). Methods: This expository paper describes the modelling approach and some methodological issues that require particular attention, including (a) determining the metric of time, (b) specifying the GMMs, and (c) including predictors of membership in the identified latent classes (groups or subtypes of patients with distinct trajectories). An example is provided of a longitudinal analysis of PRO data (patients’ responses to the Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT) Questionnaire) collected between 2008 and 2016 for a population-based cardiac registry and deterministically linked with administrative health data. Results: In determining the metric of time, multiple processes were required to ensure that “time” accounted for both the frequency and timing of the measurement occurrences in light of the variability in both the number of measures taken and the intervals between those measures. In specifying the GMM, convergence issues, a common problem that results in unreliable model estimates, required constrained parameter exploration techniques. For the identification of predictors of the latent classes, the 3-step (stepwise) approach was selected such that the addition of predictor variables did not change class membership itself. Conclusions: GMM can be a valuable tool for classifying multiple unique PRO trajectories that have previously been unobserved in real-world applications; however, their use requires substantial transparency regarding the processes underlying model building as they can directly affect the results and therefore their interpretation. © 2021, The Author(s).
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| 8. |
- Kwon, J. Y., et al.
(författare)
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Patient-reported mental health and well-being trajectories in oncology patients during radiation therapy: an exploratory retrospective cohort analysis using the Ontario Cancer Registry
- 2023
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Ingår i: Quality of Life Research. - 0962-9343. ; 32:10, s. 2899-2909
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Tidskriftsartikel (refereegranskat)abstract
- PurposeMental health and well-being trajectories are not expected to be homogeneous in diverse clinical populations. This exploratory study aims to identify subgroups of patients with cancer receiving radiation therapy who have different mental health and well-being trajectories, and examine which socio-demographic, physical symptoms, and clinical variables are associated with such trajectories.MethodsRetrospective analysis of radiation therapy patients diagnosed with cancer in 2017 was conducted using data from the Ontario Cancer Registry (Canada) and linked with administrative health data. Mental health and well-being were measured using items from the Edmonton Symptom Assessment System-revised questionnaire. Patients completed up to 6 repeated measurements. We used latent class growth mixture models to identify heterogeneous mental health trajectories of anxiety, depression, and well-being. Bivariate multinomial logistic regressions were conducted to explore variables associated with the latent classes (subgroups).ResultsThe cohort (N = 3416) with a mean age of 64.5 years consisted of 51.7% females. Respiratory cancer was the most common diagnosis (30.4%) with moderate to severe comorbidity burden. Four latent classes with distinct anxiety, depression, and well-being trajectories were identified. Decreasing mental health and well-being trajectories are associated with being female; living in neighborhoods with lower income, greater population density, and higher proportion of foreign-born individuals; and having higher comorbidity burden.ConclusionsThe findings highlight the importance of considering social determinants of mental health and well-being, in addition to symptoms and clinical variables, when providing care for patients undergoing radiation therapy.
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| 9. |
- Kwon, J. Y., et al.
(författare)
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Patient-reported outcomes and the identification of subgroups of atrial fibrillation patients: a retrospective cohort study of linked clinical registry and administrative data
- 2021
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Ingår i: Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. ; 30, s. 1547-1559
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Tidskriftsartikel (refereegranskat)abstract
- Purpose Previous research about the health and quality of life of people with atrial fibrillation has typically identified a single health trajectory. Our study aimed to examine variability in health trajectories and patient characteristics associated with such variability. Methods We conducted a retrospective analysis of data collected between 2008 and 2016 for a cardiac registry in British Columbia (Canada) linked with administrative health data. The Atrial Fibrillation Effect on Quality of Life Questionnaire was used to measure health status at up to 10 clinic visits. Growth mixture models were used and a three-step multinomial logistic regression was conducted to identify predictors of subgroups with different trajectories. Results The patients (N = 7439) were primarily men (61.1%) over 60 years of age (72.9%). Three subgroups of health status trajectories were identified: "poor but improving", "good and stable", and "excellent and stable" health. Compared with the other two groups, patients in the "poor but improving group" were more likely to (1) be less than 60 years of age; (2) be women; (3) have greater risk of stroke; (4) have had ablation therapy within 6 months to 1 year or more than 2 years after their initial consultation; and (5) have had anticoagulation therapy within 6 months. Conclusion Using growth mixture models, we found that not all health trajectories are the same. These models can help to understand variability in trajectories with different patient characteristics that could inform tailored interventions and patient education strategies.
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| 10. |
- Kwon, J. Y., et al.
(författare)
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Patient-Reported Outcomes Measurement in Radiation Oncology: Interpretation of Individual Scores and Change over Time in Clinical Practice
- 2022
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Ingår i: Current Oncology. - : MDPI AG. - 1198-0052 .- 1718-7729. ; 29:5, s. 3093-3103
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Tidskriftsartikel (refereegranskat)abstract
- Tools for measuring patients' perceived health and quality of life, such as patient-reported outcome measures (PROMs), inform clinical decisions for patients requiring radiation therapy. However, there may be inconsistencies in how patients interpret and respond to PROMs due to cultural, environmental, personal, or experiential factors. Differential item functioning (DIF) and response shift (RS) refer to differences in the meaning of PROMs between patients or over time (respectively). DIF and RS can threaten the accurate interpretation and use of PROMs, potentially resulting in erroneous conclusions about effectiveness, and flawed individual-level clinical decision-making. Given the empirical evidence of DIF and RS, we aim to review clinical implications and solutions for addressing DIF and RS by providing vignettes from collaborative examinations with workshop participants, as well as the literature. By making these methodological concepts accessible and relevant, for practice, clinicians may feel more confident to ask clarifying questions of patients when PROM scores and the contextual patient information do not align. PROM scores need to be interpreted via dialogue with the patient to avoid misinterpretation due to DIF and RS, which could diminish patient-clinician communication and impede shared decision-making. This work is part of an interdisciplinary knowledge translation initiative focused on the interpretation of PROM scores by clinically-oriented audiences.
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