Microplastic pollution in high-altitude Nainital lake, Uttarakhand, India.

Microplastics (MPs) contamination has been reported in all environmental compartments, but very limited information is available at higher-altitude lakes. Nainital Lake, located at a high altitude in the Indian Himalayas, has various ecosystem services and is the major source of water for Nainital town, but the MP abundance is still unknown. This study presents the first evidence of the abundance and distribution of MP in Nainital Lake. Surface water and sediment samples were analysed from 16 different sites in and around the catchment area of Nainital Lake. The MP were observed in all the samples, and their abundance in surface water was 8.6-56.0 particles L-1 in the lake and 2.4-88.0 particles L-1 in hotspot sites. In the surface sediment, MP abundance ranged from 0.4-10.6 particles g-1, while in the hotspot sediment, the mean abundance was 0.6 ± 0.5 particles g-1. Fibers were the dominant MP, while 0.02-1 mm were the predominant size of MP particles. The results of chemical characterization showed the presence of six polymers, among which high-density polyethylene was the most abundant. The Polymer Hazard Index assessment classified the identified polymers as low-to high-risk categories, with a higher abundance of low- (polypropylene) and medium- (polyethylene)-risk polymers. Tourist activities and run-off catchments can be considered the major sources of MP, which can affect the ecosystem. Minimal concentrations of MP were observed in the tube well and drinking water, which depicts the direct risks to humans and, thus, the need for remedial measures to prevent MP contamination in drinking water. This study improves the knowledge of MP contamination in the higher-altitude freshwater lake, which can be the major pathway for the transport of MP to the rivers, and also emphasizes the need for waste management in Nainital town.

Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

How initial policy responses to COVID-19 contributed to shaping dying at home preferences and care provision: key informant perspectives from Canada.

OBJECTIVES: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. METHODS: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. RESULTS: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. CONCLUSION: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.

Shifts in Homecare Nursing Practices and Their Implications for Families and Clients Receiving Palliative Care at Home.

Homecare nurses provide essential healthcare services at home. Changes in the nature of homecare nursing practice, however, suggest that older and frail homecare clients are less likely to have timely access to needed homecare nursing services as acute management takes priority. This has an impact on people's ability to be cared for and to die at home, a reported priority for many Canadians. This study highlights how health system changes may be constraining homecare nurses' abilities to enact care that is consistent with palliative care principles and philosophies, and calls for consideration of how shifts in homecare nursing practice have implications for families and clients receiving palliative care at home.

Early detection of emerging persistent perfluorinated alkyl substances (PFAS) along the east coast of India.

Perfluorooctanoic acid (PFOA) and Perfluorooctane sulfonate (PFOS) are resistant to breakdown and are now considered global contaminants. However, interest in these recalcitrant compounds among scientists and legislators has grown significantly in recent years. In the present study, we analyzed the level of PFOA and PFOS contamination in surface water from the coastal regions of Tamil Nadu and West Bengal. After solid phase extraction, 49 samples were analyzed by liquid chromatography coupled with mass spectrometry (LOD ≤ 1.5 ng L-1). The PFOA and PFOS present in all samples at the highest concentration were found in the Ennore coastal region (reaching a maximum of 24.8 ng L-1 and 13.9 ng L-1 in CH-6 and CH-14 respectively). Similarly, on the West Bengal coast, concentrations of PFOA ranged from <1.5 to 14.0 ng L-1 and <1.3 to 8.2 ng g-1 in water and sediment respectively. PFOS concentrations in water and sediment ranged from <1.2 to 9.0 ng L-1 and <1.2 to 7.9 ng g-1, respectively. According to the principal component analysis, the majority of the variances (65.04 %) show a positive association, which points to industrial and domestic discharges as significant point sources of these compounds. The results from this study could be used to determine and understand the levels of PFOA and PFOS contamination along the Indian Coast as well as provide baseline information for imminent monitoring investigations. The environmental occurrences of PFOA and PFOS reported in the current study would allow policymakers to take appropriate measures to safeguard coastal ecosystems or reduce the likelihood of contamination, creating a sustainable and healthy environment.

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. In two urban home dialysis clinics in Alberta, Canada, patients completed ePROs. At the implementation site, clinicians were provided with ePROs and clinician-oriented education via voluntary workshops. At the non-implementation site, neither were provided. Person-centered care was measured using the Patient Assessment of Chronic Illness Care-20 (PACIC-20). Methods: Longitudinal structural equation models (SEMs) compared change in overall PACIC scores. The interpretive description approach, using thematic analysis of qualitative data, further evaluated processes of implementation. Results: Data were collected from questionnaires completed by 543 patients, 4 workshops, 15 focus groups, and 37 interviews. There was no overall difference in person-centered care throughout the study, including after delivery of workshops. The longitudinal SEMs revealed substantial individual-level variability in overall PACIC trajectories. However, there was no improvement at the implementation site and no difference between the sites during both the pre- and post-workshop periods. Similar results were obtained for each PACIC domain. Qualitative analysis provided insights into why there was no substantial difference between sites: (1) clinicians wanted to see kidney symptoms, not quality of life, (2) workshops were tailored to clinicians' educational needs, not patients' needs, and (3) variable use of ePRO data by clinicians. Conclusion: Training clinicians on use of ePROs is complex and likely only part of what is required to enhance person-centered care. Registration: NCT03149328. https://clinicaltrials.gov/ct2/show/NCT03149328.

Of Men and Mice: Using Terrestrial Radiation Epidemiology Methods to Inform Analysis of Animal Models for Space Radiation Risk Assessment.

Prediction of cancer risk from space radiation exposure is critical to ensure spaceflight crewmembers are adequately informed of the risks they face when accepting assignments to ambitious long-duration exploratory missions. Although epidemiological studies have assessed the effects of exposure to terrestrial radiation, no robust epidemiological studies of humans exposed to space radiation exist to support estimates of the risk from space radiation exposure. Mouse data derived from recent irradiation experiments provides valuable information to successfully develop mouse-based excess risks models for assessing relative biological effectiveness for heavy ions that can provide information to scale unique space radiation exposures so that excess risks estimated for terrestrial radiation can be adjusted for space radiation risk assessment. Bayesian analyses were used to simulate linear slopes for excess risk models with several different effect modifiers for attained age and sex. Relative biological effectiveness values for all-solid cancer mortality were calculated from the ratio of the heavy-ion linear slope to the gamma linear slope using the full posterior distribution and resulted in values that were substantially lower than what is currently applied in risk assessment. These analyses provide an opportunity to improve characterization of parameters used in the current NASA Space Cancer Risk (NSCR) model and generate new hypotheses for future animal experiments using out-bred mouse populations.

'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada.

Background: Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined. Objective: The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home. Design: Semi-structured virtual interviews were conducted with 24 community and practitioner representatives and advocates across Canada during the Covid-19 pandemic. This included compassionate community advocates, palliative care professionals and volunteers, bereaved carers, and members of queer, rural, and immigrant communities. Participants were asked about their own preferences for location of dying and elaborated on these aspects with regard to their client population or community group. Results: Our analysis illuminates how meanings of dying at home are connected to previous experiences and perceptions of institutional care. As such, participants' perspectives are often framed as a rejection of institutional care. Dying at home also often signals potential for preserving ontological security and relational connection in the face of life-threatening illness. However, participants' expertise simultaneously informs a sense that dying at home is often unattainable. At times, this awareness underpins interpretations of both preferences and choices as contingent on considerations of the nature and type of illness, concerns about impacts on families, and available resources. Conclusion: The ideal of dying at home is nuanced by identity, relational, and structural contexts. Knowledge from this study can inform realistic and practical person-centered planning across care settings. It can also help create more representative public policy and health system quality indicators regarding a 'good death' that do not rely on or perpetuate undeveloped and unrealistic assumptions about dying, home, and family care.

Results of the School Children Ocular Biometry and Refractive Error Study in South India.

Objectives: Axial length (AL) is an important contributor to refraction, and growth curves are gaining importance in the prediction of myopia. This study aimed to profile the distribution of ocular biometry parameters and to identify correlates of spherical equivalent refraction (SE) among school children in South India. Materials and Methods: The School Children Ocular Biometry and Refractive Error study was conducted as part of a school screening program in southern India. The enrolled children underwent tests that included vison check, refraction, binocular vision assessment, and biometry measurements. Results: The study included 1382 children whose mean (standard deviation [SD]) age was 10.18 (2.88) years (range: 5-16 years). The sample was divided into 4 groups (grades 1-2, grades 3-5, grades 6-9, and grade 10) based on significant differences in right AL (p<0.001). The mean (SD) AL (range: 20.33-27.27 mm) among the four groups was 22.50 (0.64) mm, 22.88 (0.69) mm, 23.30 (0.82) mm, and 23.58 (0.87) mm, respectively. The mean SE (range: +1.86 to -6.56 D) was 0.08 (0.65 D) in class 1 and decreased with increasing grade to -0.39 (1.20 D) in grade 10. There was a significant difference in all biometry parameters between boys and girls (p<0.001). Age, AL, and mean corneal curvature were the main predictors of SE. Conclusion: This study provides a profile of ocular biometry parameters among school children in South India for comparison against profiles from other regions across the country. The study data will form a reference for future studies assessing myopia in this ethnicity.

Breaking the limit: Biological countermeasures for space radiation exposure to enable long-duration spaceflight.

Concerns over the health effects of space radiation exposure currently limit the duration of deep-space travel. Effective biological countermeasures could allow humanity to break this limit, facilitating human exploration and sustained presence on the Moon, Mars, or elsewhere in the Solar System. In this issue, we present a collection of 20 articles, each providing perspectives or data relevant to the implementation of a countermeasure discovery and development program. Topics include agency and drug developer perspectives, the prospects for repurposing of existing drugs or other agents, and the potential for adoption of new technologies, high-throughput screening, novel animal or microphysiological models, and alternative ground-based radiation sources. Long-term goals of a countermeasures program include reduction in the risk of radiation-exposure induced cancer death to an acceptable level and reduction in risks to the brain, cardiovascular system, and other organs.

The Need for Biological Countermeasures to Mitigate the Risk of Space Radiation-Induced Carcinogenesis, Cardiovascular Disease, and Central Nervous System Deficiencies.

NASA's currently planned long-duration, deep space exploration missions outside of low Earth orbit (LEO) will result in the exposure of astronauts to relatively high lifetime doses of ionizing radiation (IR), exceeding what humans have previously encountered in space. Of concern to this exposure are the long-term health consequences of radiation carcinogenesis, cardiovascular and degenerative disease, and central nervous system decrements. Existing engineering solutions are insufficient to decrease the lifetime accumulated IR exposure to levels currently allowable by agency standards, therefore appropriate countermeasure and mitigation strategies must be developed to enable long duration missions. Emerging discoveries in the fields of radiation oncology and the mitigation of Acute Radiation Syndrome (ARS) have demonstrated the potential for compound-based/biological radiomodifiers to drastically improve clinical outcomes and represent a promising strategy for space radiation countermeasure development. This review outlines the unique challenges posed by the space radiation environment, defines the limits of terrestrial radiation protection strategies in space, describes a brief overview of current space radiation countermeasure development strategies, highlights potential new approaches for countermeasure identification and development, and speculates on the potential benefits beyond space exploration.

A multi-omics longitudinal study of the murine retinal response to chronic low-dose irradiation and simulated microgravity.

The space environment includes unique hazards like radiation and microgravity which can adversely affect biological systems. We assessed a multi-omics NASA GeneLab dataset where mice were hindlimb unloaded and/or gamma irradiated for 21 days followed by retinal analysis at 7 days, 1 month or 4 months post-exposure. We compared time-matched epigenomic and transcriptomic retinal profiles resulting in a total of 4178 differentially methylated loci or regions, and 457 differentially expressed genes. Highest correlation in methylation difference was seen across different conditions at the same time point. Nucleotide metabolism biological processes were enriched in all groups with activation at 1 month and suppression at 7 days and 4 months. Genes and processes related to Notch and Wnt signaling showed alterations 4 months post-exposure. A total of 23 genes showed significant changes in methylation and expression compared to unexposed controls, including genes involved in retinal function and inflammatory response. This multi-omics analysis interrogates the epigenomic and transcriptomic impacts of radiation and hindlimb unloading on the retina in isolation and in combination and highlights important molecular mechanisms at different post-exposure stages.

How compassionate communities are implemented and evaluated in practice: a scoping review.

BACKGROUND: Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. METHODS: We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. RESULTS: Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. CONCLUSIONS: The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study.

BACKGROUND: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age. METHODS: Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care. RESULTS: Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older. CONCLUSIONS: Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .

Weak Magnetic Fields Enhance the Efficacy of Radiation Therapy.

PURPOSE: The clinical efficacy of radiation therapy is mechanistically linked to ionization-induced free radicals that cause cell and tissue injury through direct and indirect mechanisms. Free radical reaction dynamics are influenced by many factors and can be manipulated by static weak magnetic fields (WMF) that perturb singlet-triplet state interconversion. Our study exploits this phenomenon to directly increase ionizing radiation (IR) dose absorption in tumors by combining WMF with radiation therapy as a new and effective method to improve treatment. METHODS AND MATERIALS: Coils were custom made to produce both homogeneous and gradient magnetic fields. The gradient coil enabled simultaneous in vitro assessment of free radical/reactive oxygen species reactivity across multiple field strengths from 6 to 66 G. First, increases in IR-induced free radical concentrations using oxidant-sensitive fluorescent dyes in a cell-free system were measured and verified. Next, human and murine cancer cell lines were evaluated in in vitro and in vivo models after exposure to clinically relevant doses of IR in combination with WMF. RESULTS: Cellular responses to IR and WMF were field strength and cell line dependent. WMF was able to enhance IR effects on reactive oxygen species formation, DNA double-strand break formation, cell death, and tumor growth. CONCLUSIONS: We demonstrate that the external presence of a magnetic field enhances radiation-induced cancer cell injury and death in vitro and in vivo. The effect extends beyond the timeframe when free radicals are induced in the presence of radiation into the window when endogenous free radicals are produced and therefore extends the applicability of this novel adjunct to cancer therapy in the context of radiation treatment.

Using Patient- and Family-Reported Outcome and Experience Measures Across Transitions of Care for Frail Older Adults Living at Home: A Meta-Narrative Synthesis.

BACKGROUND AND OBJECTIVES: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home. RESEARCH DESIGN AND METHODS: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening. RESULTS: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare. DISCUSSION AND IMPLICATIONS: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.

Assessing Nonlinearity in Harderian Gland Tumor Induction Using Three Combined HZE-irradiated Mouse Datasets.

Recently reported studies considering nonlinearity in the effects of low-dose space radiation have assumed a nontargeted mechanism. To date, few analyses have been performed to assess whether a nontargeted term is supported by the available data. The Harderian gland data from Alpen et al. (published in 1993 and 1994), and Chang et al. (2016) provide the most diversity of ions and energies in a tumor induction model, including multiple high-energy and charge particles. These data can be used to investigate various nonlinearity assumptions against a linear model, including nontargeted effects in the low-dose region or cell sterilization at high doses. In this work, generalized linear models were used with the log complement link function to analyze the binomial data from the studies independently and combined. While there was some evidence of nonlinearity that was best described by a cell-sterilization model, the linear model was adequate to describe the data. The current data do not support the addition of a nontargeted effects term in any model. While adequate data are available in the low-dose region (<0.5 Gy) to support a nontargeted effects term if valid, additional data in the 1-2 Gy region are necessary to achieve power for cell-sterilization analysis validation. The current analysis demonstrates that the Harderian gland tumor data do not support the use of a nontargeted effects term in human cancer risk models.

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.

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.

More comprehensively measuring quality of life in life-threatening illness: the McGill Quality of Life Questionnaire - Expanded.

BACKGROUND: Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS: Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS: Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS: MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).