The aim of this systematic review is to provide insight into whether response shift impacts the conclusions about change in patient-reported outcome measures (PROMs) in terms of statistical significance, magnitude, and decisions made. Response shift studies from Sawatzky et al. (2025; QLR) were analyzed: longitudinal quantitative studies that examined response shift using PROMs, published before May 2023. We determined whether: 1) impact of response shift was investigated, 2) information about change in the scores of a PROM (i.e., PROM-result) before and after taking response shift into account was provided, and 3) impact of response shift was evidenced in terms of statistical significance, magnitude, or decisions made. A total of 173 response shift studies that included 943 PROM-results were evaluated. 55

OBJECTIVES:Social determinants of health (SDOH) are unevenly distributed and frequently co-occur, contributing to persistent health inequities. Analyses that examine SDOH individually may overlook important heterogeneity in how demographic and social factors cluster within populations. This study applied latent class analysis (LCA) to identify patterns of intersecting SDOH and examine their associations with health indicators. STUDY DESIGN AND SETTING:Secondary analysis was conducted using 2023-2024 survey data from a Canadian sample (N = 9743). SDOH were assessed using the Screening for Poverty and Related Social Determinants to Improve Knowledge of and Links to Resources tool. LCA was used to identify distinct patterns of SDOH. Differences across latent classes in health care utilization, medication use, self-reported physical and mental health, and multimorbidity (presence of multiple chronic conditions) were examined using chi-square tests and Cramér's V (V) effect size statistics. RESULTS:Five-class solution (entropy = 0.89) best fits the data. The classes were characterized as (1) socially stable middle-aged Canadian-born adults (21%), (2) highly educated and economically stable long-term immigrants (16%), (3) Canadian-born adults with disability and financial challenges (13%), (4) younger, racially diverse newcomers with multiple social and economic challenges (9%), and (5) older Canadian-born adults with financial and social stability (41%). The strongest differences across the latent classes were observed for multimorbidity (V = 0.41), self-reported mental and physical health (V = 0.34 and 0.30, respectively), medication use (V = 0.27-0.34), and to a lesser extent with healthcare utilization (V = 0.10-0.31). Classes characterized by intersecting disability, financial challenges, and limited social support reported poorer self-rated health and higher multimorbidity, while socioeconomic stable classes reported more favorable health indicators. CONCLUSION:SDOH cluster in distinct patterns that are differentially associated with health indicators. Analytic approaches, such as LCA, that account for how social conditions co-occur and interact provide a more accurate representation of these complex realities and can inform efforts to address health inequities. PLAIN LANGUAGE SUMMARY:Social determinants of health such as income, housing, education, disability, and social support can affect people's health. These factors often occur together, but most research examines them one at a time. This can make it difficult to understand how combinations of social challenges influence signs of health. In this study, we analyzed Canadian's responses to a survey to identify different patterns of social determinants of health. We identified five distinct patterns with different combinations of demographic and social characteristics. Some patterns reflected multiple overlapping challenges related to disability, financial challenges, and unmet social needs. Individuals within these patterns were more likely to report poorer physical and mental health, multimorbidity (having multiple chronic conditions), and greater medication use. Our findings show that social determinants of health do not occur in isolation. Instead, individuals experience different combinations of social circumstances that are related to different signs of health. Understanding these patterns may help researchers, health care providers, and policymakers develop targeted approaches to improving health equity.

Background:The Person-Centred Community Care Inventory - Swedish version (PERCCI-S) has been used in Swedish municipalities to measure person-centred care in home-based primary care (HBPC) from the patient's perspective since 2021. With use, areas for improvement have emerged. The aim was to develop a revised version that addresses issues identified in practice and incorporates recommendations from the previous validation study while maintaining or improving psychometric properties. A secondary aim was to confirm measurement equivalence of the PERCCI-S to support its use for patients with HBPC alone and those with both HBPC and social care services. Methods:Data were collected via two surveys of patients 18 years or older receiving municipal HBPC in Sweden including: a) 1 422 participants who completed the original PERCCI-S in 2023, and b) 1 204 who completed the revised version in 2024. The revised PERCCI-S was developed based on prior feedback and validated based on a series of psychometric and item-response theory analyses comparing the two versions. Results:The revised PERCCI-S consists of 12 items. One item was replaced, and three were reworded to emphasize partnership, autonomy, and emotional attunement, core elements of contemporary person-centred care frameworks. Additionally, three items were reworded for clarity. The response scale was changed from four to seven response options. Results of psychometric analyses provide support for the measurement structure of the revised PERCCI-S and measurement equivalence between patients with HBPC alone and those with both HBPC and social care services. The overall scale has good internal consistency reliability (α = 0.97) and fewer ceiling effects compared to the original. Discussion:The revised PERCCI-S (PERCCI-S-Rev) improves on the original with clearer wording and expanded response options that better distinguish patients' experiences, while maintaining strong psychometric properties.

Background and PurposeModified Delphi methods are increasingly used to develop healthcare pathways with input from people with lived experience (PWLE) and clinicians/others. However, guidance on consensus analysis in this context remains limited. We examined consensus outcomes across different scoring methods and criteria when participants were treated as a single combined group (Objective 1) versus two distinct groups (Objective 2).MethodsWe conducted a secondary analysis of Round 1 data from a project involving PWLE (N = 8) and clinicians/others (N = 51). To assess agreement on 68 Delphi statements, we applied three methods for scoring percentage agreement that differed in how the middle response on a three-point Likert scale ("approve", "not sure either way", "do not approve") was treated. Method 1 excluded the middle response, methods 2 and 3 grouped the middle response with "do not approve", and "approve", respectively. We compared consensus rates (% of items reaching consensus) using percentage agreement cutoffs of ≥70%, ≥80%, and ≥90% of participants.ResultsConsensus results varied by participants grouping, treatment of middle response categories, and cutoff criteria. Results from the combined group of PWLE and clinicians/others provided a simplified overview consensus outcome. Treating the participants into as separate groups provide nuanced results.ConclusionThe analysis of data can change the results from which to draw conclusions and inform practice. Investigators should consider the alignment of each approach with the goals of their Delphi study.

Background: Recruiting hard-to-reach research participants is not well understood, particularly among people receiving dialysis who face substantial symptom burden and complex social determinants of health (SDOH). Objective: To describe the various challenges, strategies, and SDOH associated with recruiting participants into our study of people receiving dialysis for remotely delivered therapist-guided cognitive behavioral therapy (CBT). Methods: Our study used data from ‘Re: CBT Dialysis’ project. People were initially invited through indirect recruitment strategies at 25 dialysis sites in Alberta and British Columbia (e.g., letters/posters), through Canadian kidney organizations, and via a previous project. Recruitment challenges were discussed with Community Advisors and site managers; strategies were co-developed. Due to low enrollment, people were subsequently recruited in-person from 12 (of 25) sites and reasons for not participating were recorded. Conventional content analysis was used to categorize these notes. A Chi-square test was used to compare the SDOH of non-participants who were eligible for CBT with participants. Results: Initially, 162 people joined the study through indirect recruitment. Of 2,015 people approached in-person, 168 participated, 912 declined, 335 were not eligible, and 524 did not participate for other reasons. Recruitment was boosted by expanding the inclusion criteria to invite all people receiving dialysis and introducing phone surveys, ultimately resulting in 221 people being invited to receive CBT. Of those, 48 participated. People’s decision to participate in CBT was associated with several SDOH, including religion, disabilities, housing, finances, medication access, income, and social support. Conclusion: There is a great need for additional strategies to improve equitable people-centred recruitment of hard-to-reach research participants, including people receiving dialysis and experiencing depressive symptoms.

BACKGROUND: Concerns about measurement validation are often expressed as imperatives to use a "valid measure". However, validity is not a characteristic of a measure. Instead, validation and validity refer to score interpretation within a context of use. This is important because responses to health measures can be different in different contexts, influencing equitable consequences of measurement. In this paper, we aim to (1) outline the theory of the argument-based approach to validity, and (2) discuss assumptions and evidence in relation to equitable consequences of measurement. METHODS: The argument-based approach to validity asks us to first state how scores will be interpreted and used in context. Assumptions underpinning this statement guide validation planning. Existing and new evidence need to be examined and evaluated in relation to the assumptions and concept of interest, leading to a reasoned evidence-based argument about the degree to which score interpretation in a context of use is valid, with consideration of potential threats to validity and measurement consequences. RESULTS: Key assumptions are described, including why evidence is needed, what evidence tells us, and the importance of assumptions in relation to the equitable consequences of measurement. CONCLUSION: The argument-based approach to validity shifts the focus of validation to a score's interpretation and use in a context, in relation to the concept of interest. A validity argument is built from evidence about the plausibility of the score interpretation in the context of use with consideration of the degree to which measurement consequences will lead to the intended beneficial health consequences and not perpetuate existing inequities in health.

This qualitative meta-synthesis aimed to (1) describe health-related studies that examined response shift using qualitative methods, and (2) synthesize the qualitative results about response shift. We systematically searched MEDLINE, PSYCINFO, CINAHL, EMBASE, Social Science Citation Index, and Dissertations and Theses Global to identify health-related studies using qualitative and mixed methods designs to examine response shift (n = 2221). Findings were classified using constant targeted comparison and “imported concepts” (e.g., recalibration). Of 1010 records screened, 33 had full-text screening; 14 were included, 10 of which used patient-reported outcome measures as part of their qualitative methods. Six studies specified a qualitative methodology. All of the 14 studies inferred evidence of response shift. Recalibration evidence was related to comparisons to previous health states or to others with poorer health; pre-existing expectations of current health; and adjustment of their quality of life standard. Reprioritization evidence was related to shifting life priorities to compensate for changing health status and forced changes in goals/priorities due to severity of treatment effects. Reconceptualization evidence was associated with changes in participants’ health conditions and/or treatment and commonly co-occurred with reprioritization highlighting their interconnectedness. Authors of 10 studies noted possible alternative explanations of response shift, including: recall bias, incapacity of verbalizing experiences/feelings, irrelevant stimuli, and response bias, none of which ruled out concurrent occurrence of response shift. Future work is needed to engage in dialogue about how multiple lenses towards inquiry and analysis may be leveraged to examine the multiplicity of ways in which people experience change in meaning.

Background: There is evidence that person-centred care has positive effects, and the research field is growing fast and is cumbersome to overview. The purpose of this scoping review is to present an overview of the international research literature on person-centred care. Approach: Relevant literature indexed in PubMed, Scopus, PsychINFO, CINAHL and Web of Science was retrieved. Literature searches were developed using index terms and free text words related to person-centred care. A variety of terms such as person-centred, patient-centred, client-centred, woman-centred, child-centred, family-centred and people-centred, including all variations on term endings, were included. No time restriction was used but language was restricted to English. Methods of combined manual and computer-assisted were used for screening. The initial project idea was anchored in the Gothenburg University Centre for Person-Centred Care, the GPCC, steering committee in which a senior patient partner was a member. Two patient representatives/partners were included in the project group. Results: In total, 1 351 publications were included. Theoretical and empirical studies were most prevalent in the sample. For empirical studies the most common setting was hospital care, and the study population was most often health professionals or patients. The most frequently used term was patient-centred, followed by person-centred and family-centred. Research from six continents was included, and several research clusters were revealed. Implications: The review provides an overview of the field as well as includes a discussion about the current barriers in being able to provide such an overview. The review shows for example that literature using a variety of centredness terms is eligible to include in a review on person-centred care. Transparent use of terminology (as well as underlying conceptualisations) in research is critical. This in order to prevent fragmentation of knowledge in future studies attempting towards person-centred care research synthesis, and in turn enabling research-based policy and practice development.

Evidence of measurement invariance (MI) is essential to ensure that scores based on patient-reported outcome measures (PROMs) are comparable across groups or over time. Conventional methods for evaluating MI in PROMs are mostly group-based methods that require that relevant differences pertaining mainly to the lack of MI in the target populations are known a priori. Tree-based latent variable models can be used to evaluate MI in PROMs when the covariates associated with MI violation are unknown a priori. This study illustrates the implementation of a tree-based structural equation model (SEMTree) based on recursive partitioning for evaluating MI in PROMs and identifies patient characteristics associated with MI violation. Data were from 4,027 patients with coronary artery disease (CAD) who completed the 7-item Seattle Angina Questionnaire (SAQ-7) following a cardiac angiogram procedure. Structural equation modeling was used to examine factorial validity of the SAQ-7, and model fit was evaluated. SEMTree was used to identify subgroups on which the SAQ-7 items were not invariant using patients’ demographic and disease/comorbid characteristics as explanatory (i.e., splitting) variables. The median (IQR) age was 64.0 (15.1) years, while 3,172 (78.8

Background Dying in the preferred place is associated with improved wellbeing. Preferences may be shaped by personal characteristics, health, prior experiences, and understanding of palliative care. Objectives To investigate preferences for place of end-of-life care and death in the Swedish adult population and specifically, to identify subgroups characterised by different understanding of palliative care and examine how preferences vary across these subgroups. Design This study was based on a cross-sectional population-level survey. Methods A simple random sample of 3,750 16–90-year-old individuals, selected from the Swedish Population Register. Latent class analysis identified distinct subgroups based on participants’ understanding of palliative care. Predictors of subgroup membership were examined using multinomial logistic regression. Results A total of 1,752 individuals responded (48%). Of them, 59.6% preferred end-of-life care at home, and 54.2% preferred home death. Latent Class Analysis identified five distinct subgroups: comprehensive understanding, some understanding, limited understanding, misunderstanding, and no opinion. Comprehensive understanding, such as believing that palliative care supports families and alleviates suffering, was associated with preferences for home or hospice care. Misunderstanding, such as believing that palliative care hastens death, was associated with preferences for hospital or nursing home. The comprehensive understanding group included more women (57.6%), older (mean [SD] age: 57 [18] years), and university-educated individuals (48.2%). Conclusion Although the most preferred place for both care and death were home, preferences varied across subgroups defined by differing levels of understanding of palliative care and sociodemographic characteristics.

Successful implementation and sustainability of person-centred care (PCC) require continuous evaluations and valid measurements. While several instruments measure patients’ experience with PCC, to our knowledge, no validated instrument exists in Swedish for use in home-based primary care (HBPC). This study aimed to adapt and further develop an instrument for measuring patients’ experiences of person-centred care in HBPC for use in the Swedish municipal health care system, with a 12-item version of the Person-Centred Community Care Inventory (PERCCI) used as a starting point. Furthermore, its content and measurement properties were evaluated via a mixed-methods approach involving item response theory and qualitative content analyses. This study was conducted in two stages. First, the PERCCI 12 item version was translated into Swedish using a forward-backward approach. Content validity was evaluated through focus groups with 24 registered nurses and managers, resulting in revisions. Second, the revised version (PERCCI-S) was psychometrically evaluated via two rounds of postal questionnaires (2022; 2023) with patients 18 years or older receiving municipal HBPC in Sweden (n = 1,171; n = 1,429). The psychometric evaluation involved factor analyses and item response theory analyses to assess dimensionality, item difficulty and discrimination, item and test information, test‒retest reliability, internal consistency reliability, as well correlational analyses of convergent and discriminant validity. Content validity was further assessed through a panel review with experts (n = 7) and cognitive interviews with patients (n = 20). Exploratory and confirmative factor analyses support an overall unidimensional structure. The item response theory analyses indicate acceptable item characteristic curves and overall test information. The internal consistency reliability was satisfactory (r2022 = 0.97 and r2023 = 0.96). Test-retest reliability showed good temporal stability (r = 0.79, n = 96). The content validity index was 1.0, indicating that all the items were relevant. However, the scale’s discriminant validity was unsatisfactory, with 18.0

According to the World Migration Report, the number of international migrants has steadily increased in the past 50 years. This has led to an increasing need for healthcare to incorporate a variety of perspectives for migrants. However, healthcare systems still show gaps in accommodating diverse cultural perspectives. Given the increasing attention to person-centred care, there is both an opportunity and a need to explicate how person-centred care (PCC) can help to improve healthcare for migrants. Therefore, we conducted a narrative literature review on cultural dimensions of PCC practice for migrants. A scoping review by Forsgren et al. (2025) identified 1,351 articles from a search of PubMed, Scopus, PsycINFO, CINAHL, and Web of Science databases. From these, nine studies that met the following inclusion criteria were selected: (1) about cultural dimensions of health care for migrants (immigrants and refugees), (2) in any health care settings, (3) written in English, and (4) published within the last 10 years (January 1, 2023-December 31, 2023). The studies included participants from diverse ethnicities, racial backgrounds, and countries of origin. Seven studies were undertaken in primary care, long-term care, or outpatient clinics; one study was on health education; and one additional study focused on the acute care environment. The review led to three main practices: (a) enhancing migrants’ ability to participate in their healthcare, (b) building intercultural partnerships, and (c) promoting cultural education of healthcare providers. These practices underscore the significance of respecting diverse cultural beliefs about shared decision-making and understanding how PCC practice is perceived in different cultural contexts. The results also indicate a need for educational programs that equip healthcare providers with intercultural communication skills and knowledge to provide culturally sensitive PCC. Overall, this study highlights the importance of integrating PCC with interculturalism as a way to foster a more nuanced and responsive understanding of the cultural dimension of care.

We aimed to improve the quality of life (QOL) of homecare patients (≥ 55 years of age) who had chronic life-limiting conditions and that of their family caregivers by making QOL assessment data available via a digital QOL and practice support system (QPSS). We hypothesized that access to QPSS data in home health care would result in improved QOL for patients or their family caregivers. We further sought to understand how to integrate the use of QOL information into home health care. Our mixed-methods study, including a pragmatic randomized controlled trial (PrCT; registered at ClinicalTrials.gov #NCT02940951), was conducted with nine home healthcare teams in Canadian urban areas. The qualitative research included focus groups and interviews with home healthcare teams (N = 118) to determine how to integrate the QPSS into their practice. Participating homecare patients were assigned to an intervention group (N = 166), where home healthcare teams had access to patients’ and their family caregivers’ QOL data via the QPSS, or a usual care group (N = 165). Where possible, one family caregiver per patient was recruited (intervention N = 62; usual care N = 51). Primary outcomes, measured every two months for one year, were patients’ and family caregivers’ QOL trajectories. Longitudinal structural equation models were used to compare the trajectories. The home healthcare teams preferred to have QOL scores presented as tables and graphs, with family caregivers’ data linked to each patient. Despite the enthusiasm expressed by the home healthcare teams, and efforts to satisfy their preferences, they infrequently accessed the QOL information. While we observed substantial individual-level variability in patients’ and family caregivers’ QOL trajectories, the average trajectories for the PrCT groups were similar. Making QOL assessment data available via a digital platform may not be sufficient to achieve measurable improvements for patients and family caregivers.

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. MATERIALS AND METHODS:Data were used from 7,097 respondents from the Experience of Cancer Patients in Transition Study administered in 2016. Socio-demographic variables included sex, age, marital status, place of residence, and income, alongside patient-reported outcomes. Latent class analysis was used to identify distinct social support patterns. Multivariable multinomial regression models were then used to determine predictors of these latent classes. RESULTS:Three latent classes of social support were identified: "low," "moderate," and "high" emotional support. Having "high" emotional support did not necessarily mean patients had the highest levels of all social support attributes. For example, the "low" emotional support group exhibited the highest appraisal support (16 % of class members) and giving support (42 % of class members). While most socio-demographic variables were not significant predictors of the latent classes, statistically significant differences were found in emotional health. DISCUSSION:Assessing social support requires consideration of the different patterns of support, as the presence of one attribute (e.g., appraisal or giving support) does not ensure the coverage of others (e.g., emotional support). Comprehensive assessments of these varied support patterns are recommended to better address the psychological and emotional challenges associated with a cancer diagnosis and to inform subsequent interventions.

INTRODUCTION:Mental health symptoms are underdiagnosed and undertreated among people receiving dialysis treatment. Despite a high prevalence of depression (40%) and anxiety (42%) symptoms in this population, international guidance does not exist. To address this gap, a multi-phase project involved collaboration by diverse groups in Alberta, Canada to develop and tailor a pathway that supports person-centred mental health care for Albertans receiving dialysis. METHODS:This mixed methods patient-oriented research was conducted in two phases. Phase 1 included: (a) an online clinician survey (n = 199), (b) 11 focus groups and 2 interviews involving 10 people with lived experience and 44 clinicians and administrators, and (c) a scoping review of evidence-based pharmacological treatment. Descriptive analyses of the survey data and summative content analysis of qualitative data (written survey comments and data from focus groups and interviews) were conducted to understand current processes, health services, and interventions for mental health care in Alberta Kidney Care for people receiving dialysis, and to determine appropriateness and opportunities of existing mental health services and interventions. The results were used to develop preliminary statements to inform development of the pathway. Attributes of centeredness in health care - being unique, being heard, and shared responsibility - guided pathway development. Phase 2 involved building consensus on these statements via two rounds of modified Delphi surveys (n = 59 and 51 for rounds 1 and 2, respectively), followed by a consensus call on a virtual platform for discussion and voting involving 27 participants. Voters rated their agreement for each statement using a 3-point Likert scale. Consensus was defined a priori as ≥80% agreement by two groups of voters: people with lived experience and clinicians/others. RESULTS:Phase 1 results informed the development of 68 statements in round 1 of Delphi voting; 42 were approved. Based on voter comments, 11 new statements were developed and 23 statements were revised. Round 2 of Delphi voting included 34 statements. A call was held with people with lived experience to understand why they voted differently than clinicians/others. We learned that some statement language was too technical, such as "assessment" or "score." We talked through each statement and people with lived experience verbally approved the intention of all statements. Through this dialogue, and round 2 voting, 20 statements were approved. A consensus call was held, concluding with voting on 5 statements previously not approved by both groups; 3 were approved. In total, 66 statements were approved for use in development of a pathway addressing symptoms of depression and anxiety, as well as coping. Approved statements guided depiction of the pathway as an algorithm for initial conversations, assessment, follow-up (including "red-flags" or urgent referrals), and management with non-pharmacological and pharmacological supports. CONCLUSION:Strategies to ensure person-centeredness provided all involved parties with opportunities to engage in meaningful ways in pathway development, a novel approach which may provide transferable lessons for kidney programs across Canada and internationally.

Objectives We sought to identify groups of high-need high-cost (HNHC) patients with distinct cost trajectories and describe the sociodemographic and clinical characteristics associated with group membership.Design A population-based retrospective cohort study, using administrative health data.Setting British Columbia, Canada.Participants People who were HNHC in 2017, defined as incurring health system costs in the top 5% of the population, and were continuously registered in the Medical Service Plan from January 2015 to December 2019 and alive at the end of the study period.Outcome measures The primary objective was to identify longitudinal patterns of healthcare costs using group-based trajectory modelling. Adopting a health sector perspective, we conducted person-level costing for hospital episodes, day surgeries, physician services, prescription medications, and home and community care services. The secondary objective was to explore sociodemographic and clinical characteristics associated with group membership using adjusted ORs and 95% CIs from a multinomial logit model.Results Our final sample comprised 5.4 million British Columbians. In 2017, 224 285 people met our definition of an HNHC and were included in our analysis (threshold: $C7968). We selected a model with five groups. These groups included those with persistently very high costs (44%, mean 5-year total: $C124 622); persistent high costs (32%, mean 5 year total: $C38 997); rising costs (7%, mean 5-year total: $C43 140); declining costs (10%, mean 5-year total: $C30 545); and those with a cost spike (7%, mean 5-year total: $C19 601). Being older, being in the lowest income quintile and having a greater number of comorbid health conditions were associated with increased odds of being in the persistently very-high-cost trajectory group relative to each other group. There was heterogeneity in the association between individual comorbidities and trajectory group membership. Several comorbidities were associated with a statistically significant increase in the odds of being in the persistently very-high-cost group compared with all other groups (eg, diabetes, renal failure), while others were associated with decreased odds (eg, metastatic cancer, alcohol abuse).Conclusion This study unveils the complex and diverse cost trajectories of HNHC patients in British Columbia, highlighting the necessity for tailored healthcare strategies that address individual patient needs and circumstances. Notably, a high proportion of HNHC patients exhibit persistently high costs over a 5-year period, and available sociodemographic and clinical data are not predictive of group membership. Future research is needed to develop methods for predicting future HNHC patients and to identify evidence-based interventions that can improve patient outcomes and mitigate unnecessary healthcare utilisation and costs.

IntroductionChanges in policy towards a healthcare approach viewing patients as persons provide calls for person-centred healthcare practices. The objective of this scoping review was to present an overview of the international literature on PCC.MethodsDatabase-specific search string including index terms and free text words related to PCC were constructed to identify relevant literature indexed in PubMed, Scopus, PsychINFO, CINAHL and Web of Science. Two different methods of combined manual and computer-assisted screening were applied to identify citations to be included in the review.ResultsIn total, 1,351 publications were included, whereof theoretical and empirical studies were most prevalent in the sample. For the latter, the most common setting was hospital care. The study population was most often health professionals or patients. The most frequently used term was patient-centred, followed by person-centred and family-centred. Research from six continents was included. An exploration of collaborations and research clusters has revealed several clusters.DiscussionThis review provides a snapshot of the literature on PCC. The lack of clarity in terminology presents barriers to comprehensively overviewing the vast amount of available research within the field, which in turn presents challenges for research-based policy and practice development.

Frailty in older adults with cancer is complex, evolving, and often overlooked in care. This qualitative study explored how frailty is experienced and reported using patient-reported outcome measures (PROMs) and visualized over time through journey maps. Eleven participants (65+) completed the Comprehensive Frailty Assessment Instrument (CFAI) and semi-structured interviews. Individual journey maps combined CFAI scores with personal narratives to track changes in physical, mental, and social aspects of frailty over time. While PROMs showed variability in frailty severity, narratives revealed discrepancies, such as low frailty scores despite significant treatment-related challenges. Fatigue, emotional distress, and isolation were common during treatment, with lasting impacts post-treatment. Findings suggest PROMs alone may not fully capture lived experience. Integrating narrative dialogue provides a more person-centred approach to frailty assessment and care planning.