Response shift results of quantitative research using patient-reported outcome measures: a meta-regression analysis.

Purpose: Our objectives were to identify characteristics of response shift studies using patient-reported outcomes (PROMs) that explain variability in (1) the detection and (2) the magnitude of response shift effects.

Methods: We conducted a systematic review of quantitative studies published before June 2023. First, two-level multivariable logistic regression models (effect- and sample-levels) were used to explain variability in the probability of finding a response shift effect.

Patterns of social support among older adults with cancer and associations with patient-reported outcomes: A latent class analysis.

Introduction: Social support can play an important role in the care of older adults living with cancer. However, different patterns of social support, such as emotional, instrumental, informational, appraisal, and giving support need to be considered to facilitate adjustments to cancer. This study aimed to explore the distinct patterns of social support among older adults with cancer and examine the socio-demographic variables and patient-reported outcomes that may be associated with patterns of social support.

Using journey maps to understand patientreported outcome measures in the cancer journey.

Purpose: The purpose of this qualitative study is to demonstrate the use of patient-reported outcome measure-based journey maps in facilitating clinicians' ability to communicate with patients about their well-being at each phase of their cancer journey.

Methods: Individual semi-structured online and phone interviews were conducted with older adults in British Columbia, Canada. Participants (n = 6) were asked to describe their cancer experiences associated with their well-being score using the Edmonton Symptom Assessment System revised questionnaire throughout their cancer journey (i.

APPROACH e-PROM system: a user-centered development and evaluation of an electronic patient-reported outcomes measurement system for management of coronary artery disease.

Background: Coronary artery disease (CAD) confers increased risks of premature mortality, non-fatal morbidity, and significant impairment in functional status and health-related quality of life. Routine administration of electronic patient-reported outcome measures (PROMs) and its real time delivery to care providers is known to have the potential to inform routine cardiac care and to improve quality of care and patient outcomes. This study describes a user-centered development and evaluation of the Alberta Provincial Project for Outcomes Assessment (APPROACH) electronic Patient Reported Outcomes Measurement (e-PROM) system.

Patient-driven research priorities for patient-centered measurement.

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.

Place of care and death preferences among recently bereaved family members: a cross-sectional survey.

Objectives: The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members' preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person's preferred place of death and involvement in decision-making about care.

Methods: A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses.

Results: Of the 485 participants, 70.

Self- and Proxy-Completion of Quality of Life Assessment in Dementia Care: A Review of Reviews.

Quality of life (QOL) assessment invites the perspectives of people living with dementia to be shared with family caregivers and healthcare providers. A review of reviews was conducted to describe synthesized evidence (i.e.

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project.

Background: Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism.

Unsupervised item response theory models for assessing sample heterogeneity in patient-reported outcomes measures.

Purpose: Unsupervised item-response theory (IRT) models such as polytomous IRT based on recursive partitioning (IRTrees) and mixture IRT (MixIRT) models can be used to assess differential item functioning (DIF) in patient-reported outcome measures (PROMs) when the covariates associated with DIF are unknown a priori. This study examines the consistency of results for IRTrees and MixIRT models.

Methods: Data were from 4478 individuals in the Alberta Provincial Project on Outcome Assessment in Coronary Heart Disease registry who received cardiac angiography in Alberta, Canada, and completed the Hospital Anxiety and Depression Scale (HADS) depression subscale items.

Quality of life of the Canadian population using the VR-12: population norms for health utility values, summary component scores and domain scores.

Objectives: To estimate Canadian population norms (health utility values, summary component scores and domain scores) for the VR-12.

Methods: English and French speaking Canadians aged 18 and older completed an online survey that included sociodemographic questions and standardized health status instruments, including the VR-12. Responses to the VR-12 were summarized as: (i) a health utility value; (ii) mental and physical component summary scores (MCS and PCS, respectively), and (iii) eight domain scores.

Predictors of preparedness for recovery following colorectal cancer surgery: a latent class trajectory analysis.

Aim: With an interest in providing knowledge for person-centred care, our overall goal is to contribute a greater understanding of diversity among patients in terms of their preparedness before and up to six months after colorectal cancer surgery. Our aim was to describe and provide a tentative explanation for differences in preparedness trajectory profiles.

Material And Methods: The study was explorative and used prospective longitudinal data from a previously published intervention study evaluating person-centred information and communication.

Response shift results of quantitative research using patient-reported outcome measures: a descriptive systematic review.

Purpose: The objective of this systematic review was to describe the prevalence and magnitude of response shift effects, for different response shift methods, populations, study designs, and patient-reported outcome measures (PROM)s.

Methods: A literature search was performed in MEDLINE, PSYCINFO, CINAHL, EMBASE, Social Science Citation Index, and Dissertations & Theses Global to identify longitudinal quantitative studies that examined response shift using PROMs, published before 2021. The magnitude of each response shift effect (effect sizes, R-squared or percentage of respondents with response shift) was ascertained based on reported statistical information or as stated in the manuscript.

Community-led, peer-facilitated Advance Care Planning workshops prompt increased Advance Care Planning behaviors among public attendees.

Objective: Despite recognized benefits, engagement in Advance Care Planning (ACP) remains low. Research into peer-facilitated, group ACP interventions is limited. This study investigated the acceptability of community-led peer-facilitated ACP workshops for the public and whether these workshops are associated with increased knowledge, motivation and engagement in ACP behaviors.

Voices lost: where is the person in evaluating a palliative approach to care?

Person-centredness is a cornerstone to a palliative approach to care. However, there is a risk that a person-centred perspective is lost in how a palliative approach is evaluated. We explored the extent to which evaluations of a palliative approach are consistent with its person-centred ethical stance.

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.

Objective: 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.

Methods: 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.

"Now I get what's important" - Shifting philosophies of hospice society staff and trained volunteers involved in peer-facilitated Advance Care Planning workshops for the public.

Objective: Community-led approaches can increase public engagement in Advance Care Planning (ACP). Better understanding of the experiences and perspectives of community staff and volunteers who host and facilitate community-led, peer-facilitated ACP workshops is valuable when considering the spread of these approaches.

Methods: Content analysis of qualitative data from community-based hospice societies delivering ACP workshops to the public in British Columbia: one-on-one interviews with 5 organizational representatives and focus groups with 13 peer facilitators.

Measuring skill-based health literacy in chronic airway disease patients: the development and psychometric evaluation of the Vancouver airways health literacy tool (VAHLT).

Purpose: This article describes the development of the Vancouver airways health literacy tool (VAHLT), a novel measure of skill-based health literacy specific to chronic airway diseases (CADs). Across several phases, psychometric characteristics of the VAHLT were examined and used to guide its development.

Methods: An initial pool of 46 items was developed using input from patients, clinicians, researchers, and policy-makers.

Electronic patient-reported outcomes in clinical kidney practice (ePRO Kidney): a process evaluation of educational support for clinicians.

Background: Patient-reported outcomes (PROs) are increasingly mandated in kidney care to incorporate patients' perspectives.

Objectives: We assessed whether educational support for clinicians using electronic (e)PROs could enhance person-centered care.

Design: A process evaluation, using a mixed methods longitudinal comparative concurrent design was undertaken of educational support to clinicians on routine use of ePROs.

Integrating Palliative Care in Hematopoietic Stem Cell Transplantation: A Qualitative Study Exploring Patient, Caregiver, and Clinician Perspectives.

Purpose: To explore patient, caregiver, and clinician perspectives on palliative care for patients undergoing hematopoietic stem cell transplantation (HSCT).

Participants & Setting: 8 patients who had undergone or would undergo HSCT, 4 caregivers, and 16 HSCT clinicians.

Methodologic Approach: This qualitative, interpretive descriptive study used semistructured interviews conducted via telephone or videoconference.

Patient-reported mental health and well-being trajectories in oncology patients during radiation therapy: an exploratory retrospective cohort analysis using the Ontario Cancer Registry.

Purpose: Mental 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.

Methods: Retrospective 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.

The use of text-mining software to facilitate screening of literature on centredness in health care.

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.

Pregnancy-Specific Anxiety Tool (PSAT): Instrument Development and Psychometric Evaluation.

Pregnancy-specific anxiety (PSA) is a distinct construct from general anxiety and depression. The purpose of this study was to develop, evaluate, and validate the Pregnancy-Specific Anxiety Tool (PSAT), to measure PSA and its severity. The study was carried out in 2 stages.

Validation of an Adapted Version of the Veterans RAND 12-Item Health Survey for Older Adults Living in Long-Term Care Homes.

Background And Objectives: The Veterans RAND 12-Item Health Survey (VR-12) is a generic patient-reported outcome measure of physical and mental health status. An adapted version of the VR-12 was developed for use with older adults living in long-term residential care (LTRC) homes in Canada: VR-12 (LTRC-C). This study aimed to evaluate the psychometric validity of the VR-12 (LTRC-C).

Seeing the person before the numbers: Personas for understanding patients' life stories when using patient-reported outcome measures in practice settings.

Aims: While patient-reported outcome measures (PROMs) are increasingly being integrated into health information technologies, one challenge has been to assist clinicians in understanding how the responses to PROMs relate to patient stories for identifying and addressing the care needs of individual patients. Personas, hypothetical representations of patients, can be used as an innovative strategy to support clinicians' use of PROMs in their practice. These personas embody patients' life stories, making them a valuable tool for understanding the person when using PROMs.