A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study

BackgroundFor children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries.MethodsOnline survey with in-country experts from N = 33 European countries.ResultsPediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service.ConclusionsPediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.

BackgroundThere is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population.Data and MethodsData were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson’s Disease Questionnaire), responsiveness and minimally clinically important difference.ResultsOf the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3–5. The IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0–32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach’s α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson’s r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson’s r: 0.5–0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity.ConclusionsIPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups.

Background: The main measure to generate utility data for economic evaluations is the EQ-5D, but no study has tested whether or how to map from palliative care measures to the EQ-5D. Aims: To assess the level of conceptual overlap between palliative outcomes and the EQ-5D, and the feasibility of mapping between them to obtain utilities for the Palliative care Outcome Scale. Design: A cross-sectional secondary analysis of data from three studies. Setting/participants: Patients receiving palliative care and bereaved relatives, recruited from three tertiary National Health Service hospitals in South London. Methods: The overlap between both measures was assessed using principal component analysis. The Palliative care Outcome Scale was mapped onto the EQ-5D using three regression models. Results: Spearman’s correlations between both instruments were low (mean rho = 0.11). The principal component analysis showed the Palliative care Outcome Scale is associated with only two EQ-5D dimensions (pain; and anxiety/depression). No Palliative care Outcome Scale items loaded onto the mobility, self-care and usual activities dimensions of the EQ-5D. The mapping models performed poorly at predicting utilities from Palliative care Outcome Scale data (mean absolute error >0.3 and R2 <0.10). Hence, none of the models can be recommended as acceptable for calculating utilities from Palliative care Outcome Scale responses. Conclusion: Differences between the Palliative care Outcome Scale and the EQ-5D do not undermine the qualities of either instrument when used for their own purposes. However, due to conceptual differences, the EQ-5D does not capture some of the concerns measured by the Palliative care Outcome Scale, and therefore, mapping onto the EQ-5D is unlikely to provide an appropriate basis for estimating utilities for conducting economic evaluations in palliative care studies.

BackgroundThe Palliative Care Outcome Scale (POS) is a holistic, validated, Patient Reported Outcome Measure (PROM). PROMs can enable evaluation of patient care, helping to improve service quality.AimsTo assess POS as...

BackgroundThe Normalization MeAsure Development (NoMAD) questionnaire is used to assess implementation processes based on Normalization Process Theory (NPT). However, its psychometric properties have not been extensively evaluated. This study aimed to examine the factorial validity, internal consistency, and measurement invariance at both scale and item levels of the NoMAD across three hybrid effectiveness-implementation studies determining the impact of routine symptom surveillance and guideline-based symptom management interventions in ambulatory oncology care settings.MethodsA cross-sectional survey was conducted with 328 healthcare personnel (74.% clinicians) participating in the Improving the Management of SymPtoms during And following Cancer Treatment (IMPACT) Research Consortium between 2019 and 2024. Confirmatory factor analysis (CFA) tested the hypothesized four-factor structure (coherence, cognitive participation, collective action, reflexive monitoring). Internal consistency was assessed with McDonald's omega and Cronbach's alpha coefficients (> 0.70 acceptable). Measurement invariance was tested across research centers, professional roles, and years in current roles using multi-group CFA. Model fit was defined by standard fit indices (Comparative Fit Index (CFI) and Tucker-Lewis Index (TLI) values ≥ 0.95, Root Mean Square Error of Approximation (RMSEA) values ≤ 0.06, and Standardized Root Mean Square Residual (SRMR) values ≤ 0.08. Differential item functioning (DIF) was evaluated using ordinal logistic regression and item response theory methods (ΔR2 ≥ 0.02 indicative of meaningful DIF).ResultsThe four-factor model demonstrated good fit to the data (CFI = 0.97, TLI = 0.96, RMSEA = 0.06, SRMR = 0.05). All factor loadings were statistically significant (p < 0.001), ranging from 0.606 to 0.871. Internal consistency was satisfactory for all four constructs (Omega range: 0.789–0.864, Cronbach's alpha range: 0.782–0.863). The NoMAD exhibited configural, metric, and scalar invariance across research centers, roles, and years in the current role. One item ("The staff agree that the intervention is worthwhile") showed uniform DIF across healthcare systems (ΔR2 = 0.047), but no DIF was found by role or years in the current role.ConclusionsThis study supports the factorial validity, internal consistency, and measurement invariance of the NoMAD across three oncology implementation efforts. The presence of DIF in one item provides an opportunity for refinement in this healthcare context. Researchers and practitioners can use the NoMAD to assess and compare implementation processes, informing the development and evaluation of implementation strategies.Trial registration(ClinicalTrials.gov ID NCT03850912, NCT03892967, NCT03988543).

PurposeTo investigate the structural validity, internal consistency, measurement invariance, and construct validity of the Dutch PROMIS-29 v2.1 profile, including seven physical (e.g., pain, physical function), mental (e.g., depression, anxiety), and social (e.g., role functioning) domains of health, in a Dutch general population sample including subsamples with and without chronic diseases.MethodsThe PROMIS-29 was completed by 63,602 participants from the Lifelines cohort study. Structural validity of the PROMIS-29, including unidimensionality of each domain and the physical and mental health summary scores, was evaluated using factor analyses (criteria: CFI ≥ 0.95, TLI ≥ 0.95, RMSEA ≤ 0.06, SRMR ≤ 0.08). Internal consistency, measurement invariance (no differential item functioning (DIF) for age, gender, administration mode, educational level, ethnicity, chronic diseases), and construct validity (hypotheses on known-groups validity and correlations between domains) were assessed per domain.ResultsThe factor structure of the seven domains was supported (CFI = 0.994, TLI = 0.993, RMSEA = 0.046, SRMR = 0.031) as was unidimensionality of each domain, both in the entire sample and the subsamples. Model fit of the physical and mental health summary scores reached the criteria, and scoring coefficients were obtained. Cronbach’s alpha for the seven PROMIS-29 domains ranged from 0.75 to 0.96 in the complete sample. No DIF was detected. Of the predefined hypotheses, 78% could be confirmed.ConclusionSufficient structural validity, internal consistency and measurement invariance were found, both in the entire sample and in subsamples with and without chronic diseases. Requirements for sufficient evidence for construct validity were (almost) met for most subscales. Future studies should investigate test–retest reliability, measurement error, and responsiveness of the PROMIS-29.

A number of palliative care outcome measures are used to facilitate the provision of palliative care. This short article reports the use of one palliative care outcome measure, the Palliative care Outcome Scale, with people with motor neurone disease (MND) living at home. The outcome measure was generally viewed positively by those involved. However, problems with this scale itself point to the need for a specialized instrument to assess palliative care outcomes for people living with MND.

PurposeThe brief negative symptoms scale (BNSS) is a concise instrument used to assess negative symptoms of subjects with schizophrenia covering five domains of negative symptoms and is suitable for use in clinical, experimental, and epidemiological settings. The original and translated version of BNSS has thus far been shown to have adequate psychometric properties. This study aimed to examine internal consistency, inter-rater and test-retest reliability, discriminant and convergent validity, and factor structure of the Japanese version of BNSS.Patients and methodsThe assessment was performed by 11 raters using interview videos of nine subjects. Reliability was calculated with Cronbach’s alpha for internal consistency and intra class correlation coefficient (ICC) for inter-rater reliability. Pearson’s correlation coefficients were calculated to estimate the test-retest reliability. In addition to BNSS, Scale for assessment of negative symptoms (SANS) and scale for assessment of positive symptoms (SAPS) was obtained to assess the convergent and discriminant validity. Factor structure was assessed using principle factor analysis.ResultsThe Japanese BNSS showed excellent internal consistency (Cronbach’s alpha=0.95), inter-rater reliability (intra class correlation coefficient=0.97), and test-retest reliability (r=0.94, p<0.001). The convergent validity shown by correlation with SANS total score (r=0.87, p<0.001) and discriminant validity shown by correlation with SAPS total score (r=0.17, p=−0.68) were also good. Principal factor analysis revealed a two-factor structure of BNSS, although the loading of each item differed from that in the literature.ConclusionOur pilot study demonstrated that Japanese BNSS had good psychometric properties which were achieved with relatively brief training. Further studies with more subjects and raters with various backgrounds recruited from multiple sites are warranted.

Traducción, adaptación y validación de la Palliative Care Outcome Scale al español

Purpose: Outcome measures must be responsive to change (able to show statistically significant change) and must also produce information on the degree of change that is clinically significant, or the minimal clinically important difference (MCID). This research sought to establish the MCID for four domains of the Australian Therapy Outcome Measures for Occupational Therapy (AusTOMs – OT). Methods: Using a criterion approach, 30 international clinicians were surveyed about their perceptions of the MCID for AusTOMs – OT. Second, using a distribution-based approach, the MCID was calculated as half of the standard deviation (SD) of the AusTOMs – OT raw scores for a sample of 787 clients. Results: Just over half the clinicians surveyed indicated that a one-point change represented the MCID for AusTOMs – OT for three domains, and 0.5-point change showed MCID for the final domain. The data analysed for the distribution-based calculation indicated that the half SD ranged from 0.51 to 0.61. Conclusion: Using both criterion and distribution-based approaches, this research empirically demonstrated that a change on the four domains of the AusTOMs – OT of between 0.51 and 1 point shows MCID. Considering these findings, and for ease of clinical interpretation, it is recommended that a one-point shift be adopted as the MCID across all domains.Implications for RehabilitationThe AusTOMs – OT have been previously shown to be valid and reliable outcome measures for use with all client groups across all settings including rehabilitation.So that rehabilitation professionals can interpret outcomes data from AusTOMs – OT, information must be available on the degree of change that is clinically significant (also referred to as the minimal clinically important difference or MCID).Using empirical calculations as well as clinician opinion, it is recommended that a one-point shift be used as the minimal clinically important difference for the AusTOMs – OT.

BackgroundPatients with advanced colorectal cancer (CRC) receiving chemotherapy experience multiple symptoms due to both disease progression and complications of treatment. These symptoms affect the physical, psychological, and social aspects of health-related quality of life (HRQoL). Additionally, contextual variables of patients may also impact HRQoL.ObjectiveTo test a structural equation model on symptom clusters, contextual variables, and HRQoL in patients with advanced CRC receiving chemotherapy.MethodsIn this cross-sectional study, data were collected from 300 patients with advanced CRC who had received chemotherapy at five hospitals in Bangkok, Thailand, between March 2023 and July 2023. Data collection instruments included a demographic data form, Memorial Symptom Assessment Scale, Multidimensional Scale of Perceived Social Support questionnaire, Palliative Care Outcome Scale, and Functional Assessment of Cancer Therapy-Colorectal questionnaire. Structural equation modeling (SEM) was used to test the model.ResultsSEM showed a good model fit, with χ2/df = 1.15, p = 0.20, CFI = 0.94, TLI = 0.94, RMSEA = 0.03, and SRMR = 0.02. The symptom severity cluster dimension, symptom distress cluster dimension, social support, and palliative care outcomes predicted effects on HRQoL with 78% accuracy. The findings showed that the symptom severity and symptom distress cluster dimensions showed significant negative direct and positive indirect effects on HRQoL. Palliative care outcomes had a significant negative influence on HRQoL. Moreover, social support had direct positive and indirect negative influences on HRQoL.ConclusionsSymptom clusters, social support, and palliative care outcomes were identified as predictors of HRQoL in patients with advanced CRC receiving chemotherapy. Understanding the SEM of symptom clusters, social support, palliative care outcomes, and HRQoL may help nurses and other healthcare professionals develop effective interventions to better manage symptoms in patients with advanced CRC receiving chemotherapy.

Background: Despite the large negative effect of limb deformity on health-related quality of life (QoL), there exists no patient-reported instrument to quantify this impact. Rather, limb deformity research has been performed using global QoL measurements concurrently with joint-specific and/or arthritis outcome scales, thereby requiring the completion of multiple instruments. Furthermore, joint- and arthritis-specific instruments focus on the impact pain has on function, whereas limb deformities may be pain-free with greater social and functional impairment. The purpose of this study was to validate a patient-reported instrument to quantify limb deformity-related QoL. Materials and Methods: Because of the similarities with regard to pain, function, and body image between limb deformity and scoliosis, the Scoliosis Research Society-30 (SRS-30) spine deformity instrument was modified such that the words back and trunk were replaced with limb to create a novel instrument: the limb deformity-SRS (LD-SRS). Testing for construct validity (both convergent and discriminant), reliability, floor and ceiling effects, and minimal clinically important difference (MCID) was performed in a validation cohort of 62 subjects aged 18 years or older with nonarthritic, unilateral lower extremity deformity. Results: Scale reliability was excellent (test-retest reliability, intraclass correlation coefficient = 0.977; internal consistency, Cronbach's alpha = 0.906), scores were normally distributed, and there were no floor or ceiling effects. There was also robust construct validity: convergent validity testing revealed positive correlations between the LD-SRS and all short-form-36 domains, the American Academy of Orthopaedic Surgeons-Lower Limb Module, and higher scores in those who were postcorrection. Discriminant validity was demonstrated with no correlations between the LD-SRS and subject age, sex, body mass index, surgeon-scored Limb Lengthening and Reconstruction Society-AIM Index, or surgeon-generated deformity measurements. MCID was calculated to be 0.3 (on a 4.0-point scale). Conclusions: The LD-SRS score is a reliable and valid instrument to measure limb deformity-related QoL in patients with nonarthritic lower extremity deformity. It is a valuable tool which allows clinicians to quantify patients' deformity-related QoL with a single instrument, rather than repurposing scales which have been validated for other conditions and have limited applicability to the unique challenges of treating patients with a lower limb deformity. Level of Evidence: Diagnostic, Level 2.

BackgroundGiven the rapid proliferation and use of online health resources, many of which may be of dubious quality, there is an increasing need to develop electronic health literacy (e-health literacy) skills among the population of internet users. E-health literacy encompasses the skills and abilities needed to access, understand, validate, evaluate, interpret, and apply online health-related information. Measuring e-health literacy has become crucial for developing targeted interventions, assessing their impact, and producing high-quality research findings that can inform health policy and clinical practice, which can lead to improved health outcomes and potentially reducing health inequalities. The scales need to be valid and reliable so that decisions are based on high-quality data. In this regard, the issue of the measurement invariance of scales across different demographic groups has been neglected. This is critical, as assessments should be valid across different sociodemographic groups to avoid bias when comparing them. The aim of this study was to validate the Extended e-health literacy scale (eHEALS-E) on general population and investigate its structural validity and internal consistency, construct validity in terms of convergent and discriminant validity, and examine its measurement invariance across gender, age, education and social status.MethodsThe data were collected as a part of a national health literacy survey conducted by the Slovenian National Institute of Public Health. For this survey the initial eHEALS-E scale was revised in order to address its limitations and applicability to general population. Based on a nationally representative sample, the final sample for the analysis comprised 1,944 individuals who at least occasionally used one of the various internet services to obtain health-related information. Multiple group confirmatory factor analysis was used to examine the measurement invariance of the scale.ResultsWith some adjustments, the measurement model of the revised 6-dimensional eHEALS-E scale demonstrated a good fit to the data (χ2 = 2508, df = 282, RMSEA = 0.064, SRMR = 0.070, CFI = 0.90). The scale had good internal consistency (alpha = 0.89). Although evidence of the scale’s convergent and discriminant validity was partially provided, the analysis revealed robust measurement invariance across sociodemographic groups.ConclusionsWith a minor limitation, the scale ensures an unbiased e-health literacy assessment across different social groups, which is crucial for interventions that aim to reduce health-related social inequalities. This ensures that the interventions derived from the assessment of reality are equally valid and effective for everyone, regardless of their sociodemographic background.

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.What is Known:• Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families.• Early identification is only possible with a high level of knowledge and understanding of PPC among healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.What is New:• To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.• The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. We re-established the importance of education and practical work tailored to the different professional profiles, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.

Family Caregiver Partnerships in Palliative Care Research Design and Implementation.