Background: Essential services ensure the health, safety, and well-being of individuals and their communities. However, there is currently a lack of consensus on what constitutes an essential service in Australia. This gap hinders a detailed spatial understanding of essential service provision, access, and influence on populations. This systematic review critically assessed the literature on essential services and their impact on quality of life to understand service definitions and their relative contributions to quality of life. Methods: A systematic search of ten databases was undertaken following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses methodology. Five criteria were established for the inclusion of studies: (i) major developed economies, (ii) defined essential service and focus on spatial access, (iii) quality of life outcome, (iv) peer-reviewed, and (v) published between 2000 and 2024. Results: From 1,473 unique records, seven studies met the inclusion criteria, with studies from Europe, Asia-Pacific, and North America. Across the studies, services were characterised based on their primary function and contributions to quality of life. Service categories included food, retail, personal services, health, education, culture and recreation, and faith-based services. Despite demographic and scale variations, services that fostered social connection and a sense of place showed the highest positive impact on quality of life. Conclusions: Findings indicate limited and inconsistent evidence on essential service measures and their relationship with quality of life. The persistent lack of justification for classifying services as essential in research hinders definitive conclusions about which services most effectively enhance quality of life. Future research should adopt standardised, validated measures, and address representation gaps across diverse populations and regions. This work is fundamental for developing a validated set of essential services, to improve national modelling of geographic access and inform policy, decision-making, and understanding of how access to services influences quality of life.

Objectives: Health-related quality-of-life (HRQoL) instruments for cardiovascular diseases (CVD) have been commonly used to measure important patient-reported outcomes (PROs) in clinical trials and practices. This study aimed at systematically identifying and assessing the content validity of CVD-specific HRQoL instruments in clinical studies. Methods: The research team searched Cumulative Index to Nursing and Allied Health Literature, Embase, and PubMed from inception to January 20, 2022. The research team included studies that reported the development and content validity for CVD-specific instruments. Two reviewers independently assessed the methodological quality using the Consensus-based Standards for the Selection of Health Measurement Instruments methods on evaluating content validity of PROs. Content analysis was used to categorize the items included in the instruments. Results: The research team found 69 studies reporting the content validity of 40 instruments specifically developed for CVD. Fourteen (35.0%) were rated "sufficient" with very low to moderate quality of evidence. For PRO development, all instruments were rated "doubtful" or "inadequate." Twenty-eight (70.0%) instruments cover the core concepts of HRQoL. Conclusions: The quality of development and content validity vary among existing CVD-specific instruments. The evidence on the content validity should be considered when choosing HRQoL instrument in CVD clinical studies and health economic evaluations.

Objectives: China Health -Related Outcomes Measures (CHROME) was an initiative aimed at developing a system of preference -based health -related quality of life instruments for China. CHROME -cardiovascular disease (CVD) is a CVD-specific instrument with 14 items developed under this initiative. This study aimed to test the psychometric properties of CHROME-CVD. Methods: This validation study was conducted using cross-sectional questionnaire survey in China. Eligible patients with CVD were recruited and asked to complete the CHROME-CVD, the EQ-5D-5L, and a CVD-specific nonpreference-based healthrelated quality of life instrument selected according to the confirmed diagnosis of the patients. Item evaluation, internal consistency, measurement invariance, test -retest reliability, structural validity, and construct validity were tested using classic test theory. Item response theory was used to evaluate item -level performance. Results: A total of 444 patients with CVD (coronary artery disease, n = 276, heart failure, n = 104, angina, n = 33, and atrial fibrillation, n =16) from 6 provinces in China were enrolled for the validation. Exploratory factor analysis identified 4 factors: chest pain, other symptoms, physical health, and mental and social health. Cronbach 's alpha and intraclass correlation coefficient were .0.8. A total of 20 of 26 (76.9%), and 90 of 95 (94.7%) predefined hypotheses were met for convergent and discriminant validities, respectively. No important difference was identified between subgroups of gender and residency. Response options of 10 items were found overlapped based on categorical response curves, which led to modification to 4 -level response options. Wording of 3 items were modified by referring wordings of reference instruments. Conclusion: The validation of the CHROME-CVD demonstrated generally good psychometric properties. Further validation on the modified CHROME-CVD is needed.

Background: Chronic diseases, such as chronic obstructive pulmonary disease (COPD), asthma, type 2 diabetes, and heart failure, often coexist and contribute to a significant burden on individuals and health systems. The Assessment of Burden of Chronic Conditions (ABCC) tool, already in routine clinical use in the Netherlands, aims to comprehensively assess and visualize disease burden, stimulate self-management, and encourage shared decision-making. This study aims to validate the German and Italian versions of the ABCC tool and evaluate its effectiveness and cost-effectiveness in the South Tyrolean Primary Care setting. Methods: This is a cluster-randomized study involving approximately 400 patients with COPD, asthma, type 2 diabetes, and heart failure who received care from the South Tyrolean General Practices. Initially, the ABCC tool will be translated into German and Italian and validated. Subsequently, half of the participants will use the validated ABCC tool for patient-reported outcome measurement assessments, while the other half will receive usual care. The primary outcome measure is the change in the patients' perception of the quality of care after 18 months. The secondary outcomes included changes in quality of life, self-management behavior, and healthcare utilization. The missing data will be managed using multiple imputations. Additionally, a cost-effectiveness analysis that considers the direct medical costs reimbursed by the National Health Service will be conducted. Discussion: This study provides insights into the application, validation, and efficacy of the ABCC tool in the South Tyrolean healthcare context. The tool's potential to enhance person-centered care, improve the quality of life, and possibly reduce healthcare costs could greatly contribute to sustainable healthcare. The challenges of implementation, such as software integration and the use of an EU data platform, will provide lessons for future international patient care data management. Trial registration: ISRCTN registry, ISRCTN13531607. Registered on August 23, 2023.

Background: Complementary and alternative therapy is widely used to treat chronic obstructive pulmonary disease (COPD). A Chinese herbal medicine, JianPiYiFei (JPYF) II granules, have been shown to improve COPD patients' quality of life, however long-term effectiveness has not been examined. Purpose: To investigate whether long-term treatment with JPYF II granules is effective and safe for patients with stable, moderate to very severe COPD. Study design and methods: A multicentre, randomised, double-blinded, placebo-controlled trial was conducted. Eligible participants from six hospitals were randomly assigned 1:1 to receive either JPYF II granules or placebo for 52 weeks. The primary outcome was the change in St. George's Respiratory Questionnaire (SGRQ) score during treatment. Secondary outcomes included the frequency of acute exacerbations during treatment, COPD Assessment Test (CAT), 6-minute walking test (6MWT), lung function, body mass index, airflow obstruction, dyspnoea, exercise capacity (BODE) index, and peripheral capillary oxygen saturation (SpO2) at the end of treatment. Results: A total of 276 patients (138 in each group) were included in the analysis. JPYF II granules led to a significantly greater reduction in SGRQ score (-7.33 points, 95% CI -10.59 to -4.07; p < 0.0001) which reflects improved quality of life. JPYF II granules improved CAT (-3.49 points, 95% CI -5.12 to -1.86; p < 0.0001) and 6MWT (45.61 metres, 95% CI 20.26 to 70.95; p = 0.0005), compared with placebo. Acute exacerbations were less frequent with JPYF II granules than with placebo (0.87 vs. 1.34 events per patient; p = 0.0043). There were no significant differences between the groups in lung function, BODE index and SpO2. JPYF II granules were well tolerated and no significant adverse effects were noted. Conclusions: Long-term treatment with JPYF II granules is effective in moderate to very severe COPD, improving quality of life and exercise capacity, decreasing the risk of acute exacerbation, and relieving symptoms.

Background: Syphilis is a sexually transmitted infection causing significant global morbidity and mortality. To inform policymaking and economic evaluation studies for syphilis, we summarised utility and disability weights for health states associated with syphilis. Methods: We conducted a systematic review, searching six databases for economic evaluations and primary valuation studies related to syphilis from January 2000 to February 2022. We extracted health state utility values or disability weights, including identification of how these were derived. The study was registered in the international prospective register of systematic reviews (PROSPERO, CRD42021230035). Findings: Of 3401 studies screened, 22 economic evaluations, two primary studies providing condition-specific measures, and 13 burden of disease studies were included. Fifteen economic evaluations reported outcomes as disability-adjusted life years (DALYs) and seven reported quality-adjusted life years (QALYs). Fourteen of 15 economic evaluations that used DALYS based their values on the original Global Burden of Disease (GBD) study from 1990 (published in 1996). For the seven QALY-related economic evaluations, the methodology varied between studies, with some studies using assumptions and others creating utility weights or converting them from disability weights. Interpretation: We found a limited evidence base for the valuation of health states for syphilis, a lack of transparency for the development of existing health state utility values, and inconsistencies in the application of these values to estimate DALYs and QALYs. Further research is required to expand the evidence base so that policymakers can access accurate and well-informed economic evaluations to allocate resources to address syphilis and implement syphilis programs that are cost-effective.

Background:Atopic dermatitis (AD) is a common skin condition with multiple topical treatment options, but uncertain comparative effects. Objective:We sought to systematically synthesize the benefits and harms of AD prescription topical treatments. Methods:For the 2023 American Academy of Allergy, Asthma & Immunology and American College of Allergy, Asthma, and Immunology Joint Task Force on Practice Parameters AD guidelines, we searched MEDLINE, EMBASE, CENTRAL, CINAHL, LILACS, ICTRP, and GREAT databases to September 5, 2022, for randomized trials addressing AD topical treatments. Paired reviewers independently screened records, extracted data, and assessed risk of bias. Random-effects network meta-analyses addressed AD severity, itch, sleep, AD-related quality of life, flares, and harms. The Grading of Recommendations Assessment, Development and Evaluation approach informed certainty of evidence ratings. We classified topical corticosteroids (TCS) using 7 groups-group 1 being most potent. This review is registered in the Open Science Framework (https://osf.io/q5m6s). Results:The 219 included trials (43,123 patients) evaluated 68 interventions. With high-certainty evidence, pimecrolimus improved 6 of 7 outcomes-among the best for 2; high-dose tacrolimus (0.1%) improved 5-among the best for 2; low-dose tacrolimus (0.03%) improved 5-among the best for 1. With moderate- to high-certainty evidence, group 5 TCS improved 6-among the best for 3; group 4 TCS and delgocitinib improved 4-among the best for 2; ruxolitinib improved 4-among the best for 1; group 1 TCS improved 3-among the best for 2. These interventions did not increase harm. Crisaborole and difamilast were intermediately effective, but with uncertain harm. Topical antibiotics alone or in combination may be among the least effective. To maintain AD control, group 5 TCS were among the most effective, followed by tacrolimus and pimecrolimus. Conclusions:For individuals with AD, pimecrolimus, tacrolimus, and moderate-potency TCS are among the most effective in improving and maintaining multiple AD outcomes. Topical antibiotics may be among the least effective.

Background: A variety of nonpharmacological interventions that improve the quality of life of patients with advanced cancer have been difficult for medical staff to select through randomized controlled trials or traditional meta-analyses. Thus, a network meta-analysis is necessary. Objective: This study used network meta-analysis to analyze the effect of 13 different nonpharmacological interventions on improving the living quality of patients with advanced cancer. Methods: Five English databases were searched up to January 2019. The search strategy only included terms relating to or describing the intervention. Results: The study included 13 different nonpharmacological interventions. The overall efficacy was summarized through a holistic study of quality of life. The study found that the combined effect sizes of 13 nonpharmacological interventions crossed the invalid line (weighted mean difference, -13 [95% confidence interval, -33 to 8.5] to 1.7 [95% confidence interval, -18 to 22]), indicating that none of the intervention was significantly different from each other. By evaluating the heterogeneity of this outcome, no significant evidence of heterogeneity ( P > .05) was observed. Probability ranking according to the surface under the cumulative ranking curve showed that there was a great possibility for the CanWalk intervention and structured multidisciplinary intervention to improve outcomes for cancer patients. Conclusions: Thirteen nonpharmacological interventions did not significantly impact quality of life. Regarding the probability rank, CanWalk intervention may be the most promising way that advanced cancer patients can help themselves to a better life. Because of the limitations of the current studies, the conclusion needs further evidence. Implications for practice: Nurses should consider recommending moderate physical activity for patients with advanced cancer.

Purpose: We aimed to identify the condition- and transplant-specific patient-reported outcome measures (PROMs) available to measure quality of life (QoL) in solid organ transplant (SOT) recipients, examine their development and content, and critically appraise the quality of their measurement properties, to inform recommendations for clinical and research use. Methods: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, and Scopus from inception to 27th January 2023. Search hits were screened for eligibility by two independent reviewers; papers reporting the development and/or validation of condition- and transplant-specific PROMs measuring QoL in adult SOT recipients were considered eligible. We abstracted and synthesised data on PROM characteristics, development (item generation and/or reduction), and content (QoL dimensions). Quality appraisal and synthesis were informed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines, and included methodological and quality assessment of measurement properties, GRADE levels of evidence, feasibility and interpretability. Results: We identified 33 papers reporting 26 QoL PROMs validated in SOT recipients (kidney n = 10 PROMs; liver n = 6; lung n = 3; heart n = 2; pancreas n = 1; multiple organs n = 4). Patient discussions (n = 17 PROMs) and factor analysis (n = 11) were the most common item generation and reduction techniques used, respectively. All PROMs measured ≥3 of nine QoL dimensions (all measured emotional functioning); KDQoL-SF and NIDDK-QA measured all nine. Methodological quality was variable; no PROM had low evidence or better for all measurement properties. All PROMs were COSMIN recommendation category 'B', primarily because none had sufficient content validity. Conclusions: There are many condition- and transplant-specific QoL PROMs validated in SOT recipients, particularly kidney. These findings can help inform PROM selection for clinicians and researchers. However, caution is required when adopting measures, due to the substantial heterogeneity in development, content, and quality. Each PROM has potential but requires further research to be recommendable. Greater consideration of patient and professional involvement in PROM development in this setting is needed to ensure sufficient content validity.

Objective To evaluate and compare the measurement properties of the EQ-5D-5L and SF-6Dv2 among Chinese overweight and obesity populations.Methods A representative sample of Chinese overweight and obesity populations was recruited stratified by age, gender, body mass index (BMI), and area of residence. Social-demographic characteristics and self-reported EQ-5D-5L and SF-6Dv2 responses were collected through the online survey. The agreement was assessed using intraclass correlation coefficients (ICC). Convergent validity and known-group validity were examined using Spearman's rank correlation and effect sizes, respectively. The test-retest reliability was assessed using among a subgroup of the total sample. Sensitivity was compared using relative efficiency and receiver operating characteristic.Results A total of 1000 respondents (52.0% male, mean age 51.7 years, 67.7% overweight, 32.3% obesity) were included in this study. A higher ceiling effect was observed in EQ-5D-5L than in SF-6Dv2 (30.6% vs. 2.1%). The mean (SD) utility was 0.851 (0.195) for EQ-5D-5L and 0.734 (0.164) for SF-6Dv2, with the ICC of the total sample was 0.639 (p < 0.001). The Spearman's rank correlation (range: 0.186-0.739) indicated an acceptable convergent validity between the dimensions of EQ-5D-5L and SF-6Dv2. The EQ-5D-5L showed basically equivalent discriminative capacities with the SF-6Dv2 (ES: 0.517-1.885 vs. 0.383-2.329). The ICC between the two tests were 0.939 for EQ-5D-5L and 0.972 for SF-6Dv2 among the subgroup (N = 150). The SF-6Dv2 had 3.7-170.1% higher efficiency than the EQ-5D-5L at detecting differences in self-reported health status, while the EQ-5D-5L was found to be 16.4% more efficient at distinguishing between respondents with diabetes and non-diabetes.Conclusions Both the EQ-5D-5L and SF-6Dv2 showed comparable reliability, validity, and sensitivity when used in Chinese overweight and obesity populations. The two measures may not be interchangeable given the systematic difference in utility values between the EQ-5D-5L and SF-6Dv2. More research is needed to compare the responsiveness.

BACKGROUND: Despite global support, there remain gaps in the integration of early palliative care into cancer care. The methods of implementation whereby evidence of benefits of palliative care is translated into practice deserve attention. AIM: To identify implementation frameworks utilised in integrated palliative care in hospital-based oncology services and to describe the associated enablers and barriers to service integration. DESIGN: Systematic review with a narrative synthesis including qualitative, mixed methods, pre-post and quasi experimental designs following the guidance by the Centre for Reviews and Dissemination (PROSPERO registration CRD42021252092). DATA SOURCES: Six databases searched in 2021: EMBASE, EMCARE, APA PsycINFO, CINAHL, Cochrane Library and Ovid MEDLINE searched in 2023. Included were qualitative or quantitative studies, in English language, involving adults >18 years, and implementing hospital-based palliative care into cancer care. Critical appraisal tools were used to assess the quality and rigour. RESULTS: Seven of the 16 studies explicitly cited the use of frameworks including those based on RE-AIM, Medical Research Council evaluation of complex interventions and WHO constructs of health service evaluation. Enablers included an existing supportive culture, clear introduction to the programme across services, adequate funding, human resources and identification of advocates. Barriers included a lack of communication with the patients, caregivers, physicians and palliative care team about programme goals, stigma around the term 'palliative', a lack of robust training, or awareness of guidelines and undefined staff roles. CONCLUSIONS: Implementation science frameworks provide a method to underpin programme development and evaluation as palliative care is integrated within the oncology setting.

Background & objectives: The Government of India has initiated a population based screening (PBS) for noncommunicable diseases (NCDs). A health technology assessment agency in India commissioned a study to assess the cost-effectiveness of screening diabetes and hypertension. The present study was undertaken to estimate the cost of PBS for Type II diabetes and hypertension. Second, out-of-pocket expenditure (OOPE) for outpatient care and health-related quality of life (HRQoL) among diabetes and hypertension patients were estimated. Methods: Economic cost of PBS of diabetes and hypertension was assessed using micro-costing methodology from a health system perspective in two States. A total of 165 outpatients with diabetes, 300 with hypertension and 497 with both were recruited to collect data on OOPE and HRQoL. Results: On coverage of 50 per cent, the PBS of diabetes and hypertension incurred a cost of (sic) 45.2 per person screened. The mean OOPE on outpatient consultation for a patient with diabetes, hypertension and both diabetes and hypertension was (sic) 4381 (95% confidence interval [CI]: 3786-4976), (sic) 1427 (95% CI: 1278-1576) and (sic) 3932 (95% CI: 3614-4250), respectively. Catastrophic health expenditure was incurred by 20, 1.3 and 14.8 per cent of patients with diabetes, hypertension and both diabetes and hypertension, respectively. The mean HRQoL score of patients with diabetes, hypertension and both was 0.76 (95% CI: 0.72-0.8), 0.89 (95% CI: 0.87-0.91) and 0.68 (95% CI: 0.66-0.7), respectively. Interpretations & conclusions: The findings of our study are useful for assessing cost-effectiveness of screening strategies for diabetes and hypertension.

PUPROSE: To systematically review the effectiveness of psychosocial interventions developed for informal caregivers of hemodialysis patients. METHODS: Relevant studies were identified through five electronic databases: PubMed, Scopus, Web of Science, ProQuest, and the CENTRAL. Randomized controlled trials (RCTs) and quasi-experimental studies describing interventions for informal caregivers of adult in-center hemodialysis patients (≥18 years old) were included and independently appraised by two reviewers using the Joanna Briggs Institute Statistics Assessment and Review Instruments critical appraisal checklists. RESULTS: Eleven articles evaluating eight intervention programs were included in this review, covering a total of 729 informal caregivers. Most studies implemented educational or psycho-educational interventions (n = 6). Psycho-educational interventions designed to promote caregivers' ability to care and to cope with the caregiving role had positive effects on burden and/or quality of life. Psychological interventions also had large effects on reducing the burden over time. CONCLUSIONS: There are still few interventions available to caregivers of hemodialysis patients. Psychosocial interventions showed great potential in improving the caregiver burden and quality of life. Further research with rigorous designs is needed to achieve stronger evidence on the extent of the current findings.

Simple Summary In multiple myeloma, a type of blood cancer, the measurement of the outcomes of treatment reported by patients (patient-reported outcome measurement) is useful to reveal how treatment affects the quality of life, symptoms, and side effects of treatment to evaluate the benefit-risk balance of a particular drug or drug combination. We evaluated the research reported in the literature to identify and evaluate patient-reported outcome measures used in clinical trials. The most frequently used instrument was the generic questionnaire, named EORTC QLQ-30, used for cancer patients. The second most frequently used tools were the multiple myeloma-specific EORTC-MY20 questionnaires and the generic EQ-5D. Only 19 instruments reported in the literature were consistent with the trial design. The findings indicate that the measurement of patient-reported outcomes in clinical trials for multiple myeloma patients is underutilised, underreported, and often inconsistent. Thus, guidelines for the appropriate use and reporting of such questionnaires are needed to ensure standardisation in the selection and reporting of patients' views. This report is a valuable reference for the appropriate use of questionnaires for professionals performing clinical trials to ensure accurate and appropriate reporting of results for multiple myeloma patients and their caregivers and patient advocates. Background: Patient-reported outcomes (PROs) are becoming increasingly important in supporting clinical outcomes in clinical trials. In multiple myeloma (MM), PRO measurement is useful to reveal how treatment affects physical, psychosocial, and functional behaviour as well as symptoms and treatment-related adverse events to evaluate the benefit-risk ratio of a particular drug or drug combination. We report the types of PRO instruments used in MM, the frequency in which they are utilised in randomised controlled trials (RCTs), and the consistency of their reporting. Methods: The European Hematology Association (EHA) supports the development of guidelines for the use of PROs in adult patients with haematological malignancies. The first step is the present systematic review of the literature. MEDLINE and CENTRAL were searched for RCTs in MM between 2015 and 2020. Study design, characteristics of MM and its treatment, the primary outcomes, and the types of PRO instrument(s) were extracted using a predefined template. Additionally, in a stepwise approach, it was assessed whether the identified instruments had been validated for multiple myeloma patients, patients with haematological malignancies, or cancer patients. Results: Following screening for RCTs, 283 studies were included for review from 10,707 records retrieved, and 118 of these planned the use of PRO measures. Thirty-eight PRO instruments were reported. The most frequently used instrument (92 studies) was the EORTC QLQ-30. The EORTC-MY20 MM-specific questionnaire was the second most frequently used (50 studies), together with the EQ-5D (50 studies). Only 19 PRO instruments reported were consistent with the trial registry. Furthermore, in 58 publications, the information on PRO instruments differed between the publication and the trial registry. Further, information on PRO in HTA reports was available for 26 studies, of which 18 reports were consistent with the trial registries. Out of the 38 instruments used, six had been validated for patients with multiple myeloma (the most frequently used), six for patients with haematological malignancies, and 10 for cancer patients in general. Conclusions: The findings indicate that the measurement of PROs in RCTs for MM is underutilised, underreported, and often inconsistent. Guidelines for the appropriate use of PROs in MM are needed to ensure standardisation in selection and reporting. Furthermore, not all PRO instruments identified have been validated for myeloma patients or patients with haematological malignancies. Thus, guidelines for the appropriate use and reporting of PROs are needed in MM to ensure standardisation in the selection and reporting of PROs.

OBJECTIVES: This systematic review and meta-analysis assesses the effectiveness of psychological interventions that involve people with dementia or mild cognitive impairment (MCI) and their informal caregivers, and target improvements in the management of the behavioral and psychological symptoms of dementia (BPSD); quality of life; and/or burden reduction for people with either dementia or MCI and their informal caregivers. METHODS: Studies were identified through database searches (Cochrane Library, CENTRAL, CINAHL, EMBASE, MEDLINE and PsychINFO) and clinical trials registers (ClinicalTrials.gov and http://apps.who.int/trialsearch/). Data were pooled for meta-analysis. RESULTS: Database and reference list searches identified 1,878 references, of which fourteen studies were included. Positive effects were found on the anxiety symptoms of people with dementia on the RAID scale; on the quality of life of people with dementia on the self-rated QoL-AD scale; and on informal caregiver burden on the Zarit Burden Interview. CONCLUSIONS: Psychological interventions involving whole dyads have some promise for both people with dementia and informal caregivers, but are still far from uniformly effective across BPSD, quality of life, and caregiver burden. Further research directions are discussed.Clinical Implications: The results suggest that clinicians should routinely involve both halves of the dyad when delivering psychological interventions targeting anxiety or quality of life for people with dementia, or burden for informal caregivers.

CONTEXT: Goals-of-care communication (GOCC) is recommended to increase the value of cancer care near the end of life (EOL). OBJECTIVES: Conduct a systematic review of the evidence that GOCC is associated with higher-value care. METHODS: We searched PubMed, Scopus, Ovid MEDLINE, EMBASE, EMB Reviews, CINAHL, and PsycInfo from inception to July 2019. We analyzed the population,design, and results and the authors' definitions of GOCC. Risk of bias was assessed. RESULTS: Thirty-two articles were selected. Ten articles reported results from 8 interventions; 17 characterized participants' perspectives; and 5 were retrospective The topics, behaviors, timing, and anticipated outcomes of GOCC varied significantly and were indistinguishable from practices such as advance care planning. GOCC typically focused on treatment outcomes rather than patients' goals. Four of 5 interventions increased evidence of GOCC after clinician training. Only one reported improved patient outcomes. CONCLUSION: No consensus exists about what GOCC entails. There is limited evidence that GOCC increases the value of EOL care. PRACTICE IMPLICATIONS: Future studies should focus on how to engage patients in conversations about their personal goals and integrate their goals into care planning. Clinicians can encourage GOCC by explaining how patients' goals influence decisions especially as treatment options become limited.

INTRODUCTION: Lay-caregivers in organ transplantation (to candidates, recipients, and donors) are essential to pre- and post-operative care, but report significant caregiving-related stressors. This review aims to summarize studies testing non-pharmacological interventions aimed at improving organ transplant caregiver-reported outcomes. METHODS: In accordance with PRISMA, we conducted a systematic review (searched PubMed, Embase, Cochrane Central, PsycInfo, and CINAHL, no start-date restriction through 7/1/2021). Quality of comparative studies assessed by ROBS-2 or ROBINS. RESULTS: Twelve studies met inclusion. Study designs, interventions, and outcomes varied. Sample sizes were small across caregivers to adult (nine studies, five with caregiver samples) and pediatric patients (three studies, caregiver samples). Study designs included seven single-arm interventions, two pre-post with comparison cohorts, and three randomized-controlled trials. Eight studies included transplant-specific education as the intervention, an interventional component, or as the comparison group. Outcomes included transplant specific knowledge, mental health, and intervention acceptability. Of the nine pre-post caregiver assessments and/or comparison groups, four studies demonstrated no statistically significant intervention effects. CONCLUSION: Few interventions addressing the needs of organ transplant caregivers have been empirically evaluated. Existing interventions were well-received by caregivers. Given complexities of care in transplantation, research is needed evaluating interventions using rigorous trial methodology with adequate samples.

OBJECTIVE: This meta-analysis aimed to determine the effectiveness of non-physician provider-led palliative care (PC) interventions in the management of adults with advanced illnesses on patient-reported outcomes and advance care planning (ACP). METHODS: We included randomised trials and cluster trials published in MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Register of Controlled Trials and ClinicalTrials.gov searched until July 2021 that examined individuals 18 years with a diagnosis of advanced, life-limiting illness and received a PC intervention led by a non-physician (nurse, advance practitioner or social worker). Our primary outcome was quality of life (QOL), which was extracted as unadjusted or adjusted estimates and measures of variability. Secondary outcomes included anxiety, depression and ACP. RESULTS: Among the 21 studies (2370 subjects), 13 included patients with cancer, 3 with heart failure, 4 with chronic respiratory disease and 1 with chronic kidney disease. The interventions were diverse and varied with respect to team composition and services offered. For QOL, the standardised mean differences suggested null effects of PC interventions compared with usual care at 1-2 months (0.04; 95% CI=-0.14 to 0.23, n=10 randomised controlled trials (RCTs)) and 6-7 months (0.10; 95% CI=-0.15 to 0.34, n=6 RCTs). The results for anxiety and depression were not significant also. For the ACP, there was a strong benefit for the PC intervention (absolute increase of 0.32% (95% CI=0.06 to 0.57). CONCLUSIONS: In this meta-analysis, PC interventions delivered by non-physician were not associated with improvement in QOL, anxiety or depression but demonstrated an impact on the ACP discussion and documentation.

BACKGROUND: Telemedicine plays an important role in the management of inflammatory bowel disease (IBD), particularly during a pandemic such as COVID-19. However, the effectiveness and efficiency of telemedicine in managing IBD are unclear. OBJECTIVE: This systematic review and meta-analysis aimed to compare the impact of telemedicine with that of standard care on the management of IBD. METHODS: We systematically searched the PubMed, Cochrane Library, EMBASE, Web of Science, and Scopus databases on April 22, 2020. Randomized controlled trials comparing telemedicine with standard care in patients with IBD were included, while conference abstracts, letters, reviews, laboratory studies, and case reports were excluded. The IBD-specific quality of life (QoL), disease activity, and remission rate in patients with IBD were assessed as primary outcomes, and the number of in-person clinic visits per patient, patient satisfaction, psychological outcome, and medication adherence were assessed as secondary outcomes. Review Manage 5.3 and Stata 15.1 were used for data analysis. RESULTS: A total of 17 randomized controlled trials (2571 participants) were included in this meta-analysis. The telemedicine group had higher IBD-specific QoL than the standard care group (standard mean difference 0.18, 95% CI 0.01 to 0.34; P.03). The number of clinic visits per patient in the telemedicine group was significantly lower than that in the standard care group (standard mean difference -0.71, 95% CI -1.07 to -0.36; P<.001). Subgroup analysis showed that adolescents in the telemedicine group had significantly higher IBD-specific QoL than those in the standard care group (standard mean difference 0.42, 95% CI 0.15 to 0.69; I2=0; P.002), but there was no significant difference between adults in the 2 groups. There were no significant differences in disease activity, remission rate, patient satisfaction, depression, self-efficacy, generic QoL, and medication adherence outcomes between the telemedicine and standard care groups. CONCLUSIONS: Telemedicine intervention showed a promising role in improving IBD-specific QoL among adolescents and decreased the number of clinic visits among patients with IBD. Further research is warranted to identify the group of patients with IBD who would most benefit from telemedicine.

PURPOSE OF REVIEW: Mental illnesses, especially depression and anxiety, are common conditions frequently underrecognized and untreated among individuals with end-stage kidney disease. Existing tools/interventions, approaches to care, and resources to support mental health for people treated with dialysis in Canada are not well known. The aim of this scoping review was to systematically describe how mental health care is provided to adults treated with dialysis in Canada. The research questions we sought to answer were the following: (1) What mental health assessment tools and interventions for adults treated with dialysis have been investigated and utilized in Canada? (2) what is the structure and process of mental health care delivered by kidney care to adults treated with dialysis in Canada? and (3) what is the availability of mental health care resources developed for adults treated with dialysis in Canada? SOURCES OF INFORMATION: Electronic databases included Medline, Embase, CINAHL, PsycINFO, Cochrane Library, Scopus, and Web of Science for peer-reviewed literature, and Google search engine for gray literature. METHODS: Systematic searches were conducted to identify peer-reviewed and gray literature that focused on mental health care or support offered to adults receiving any form of dialysis in Canadian kidney care settings and/or community organizations. Mental health care and support was defined to include mental health assessment tools, interventions, resources, guidelines, and/or pathways used in dialysis in Canada. Title, abstracts, and full texts were screened independently by 2 reviewers with discrepancies resolved by additional team members. Web sites were screened by individual members. Data from included studies and Web sites were extracted based on the abovementioned research questions. KEY FINDINGS: We identified 8 peer-reviewed articles from electronic databases, and 28 separate Web site addresses. Of the 8 articles, 4 investigated mental health assessment tools and 4 examined mental health interventions for individuals treated with dialysis in Canada. The mental health assessment tools that have been used are Beck Depression Inventory-II (BDI-II), Edmonton System Assessment Scale (ESAS), Edmonton System Assessment Scale revised (ESAS-r): Renal, Hospital Anxiety and Depression Scale (HADS), and Distress Assessment and Response Tool (DART), and the nonpharmacological interventions that have been investigated are intradialytic exercise, tai chi exercise program, medical music therapy, and brief mindfulness meditation. Of the 28 Web site addresses, 2 contained clinical tools for kidney care providers for the management of depression and anxiety in individuals treated with dialysis. The 26 remaining Web sites contained mental health resources for individuals with kidney disease, which presented different types of resources, including psychoeducation, peer support, and linkage to other services. CONCLUSION: In conclusion, we found only a limited number of studies investigating mental health assessment tools and interventions in Canada; there was a paucity of randomized controlled trials. Clinical pathways for the assessment and management of mental illness or symptoms in individuals treated with dialysis in Canada are also limited, and no clinical practice guidelines exist. Several mental health resources for people living with dialysis are available, predominantly focused on psychoeducation and peer support. Despite increasing prevalence of mental health concerns by people treated with dialysis, mental health care remains underaddressed. LIMITATIONS: It is plausible that additional literature related to mental health assessment tools, interventions, resources, guidelines, and pathways exists that we did not find during our systematic search, especially in gray literature that was limited to one search engine. In addition, health care agencies or organizations may have developed other mental health resources, which may not be available on the Internet.