Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs.

BACKGROUND: Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. AIM: To identify the symptom prevalence and severity experienced by patients with motor neurone disease. Secondary objectives were to examine differences in symptom burden and clusters according to phenotype, functional status, palliative care provision and those in their last months of life. DESIGN: A point prevalence study assessing patient-reported symptoms using a modified IPOS-Neuro assessment tool, incorporating 41 symptom items. SETTING/PARTICIPANTS: Patients with motor neurone disease attending the State-wide Progressive Neurological Disease Service or inpatient unit at Calvary Health Care Bethlehem, Melbourne Australia, from March to December 2021. RESULTS: A total of 102 patients participated, the majority diagnosed with lumber-onset (30.4%), bulbar-onset (28.4%) and cervical-onset (25.5%) phenotypes. Patients experienced a median of 17 symptoms (range 2-32) with a median of 3 symptoms rated as severe/overwhelming (range 0-13). Motor and functional symptoms predominated, with differences in symptom clusters present according to phenotype. Patients had a higher number of severe/overwhelming symptoms if they were accessing palliative care services (p = 0.005), in their last 6 months of life (p = 0.003) and experiencing moderate or severe functional impairment (p < 0.001). CONCLUSIONS: Patients with motor neurone disease report high symptom burden. A validated motor neurone disease-specific symptom assessment tool is needed to accurately assess patients, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.

Translation and cultural adaptation of the Greek integrated palliative care outcome scale (IPOS): challenges in a six-phase process.

AIM: To translate and culturally adapt IPOS to the Greek population. METHODS: A four phases- sequential study, which included verification of conceptual equivalence, double forward- backward translations and conceptual cognitive debriefing. Focus group interviews used 'think aloud' and 'verbal probing' techniques. Interviews were audio-recorded, transcribed verbatim and thematically analyzed using predefined categories. Purposely sampled from two oncology and palliative care units in Athens. RESULTS: The Integrated Palliative Care Outcome Scale was well accepted by both patients and health professionals. Overall comprehension and acceptability of the scale were good. The comprehension and judgement challenges identified in the pre-final version were successfully resolved in the cognitive interviewing phase. Five out of the seventeen translated items of the scale were modified after cognitive debriefing. Comprehension difficulties were identified with specific terms (e.g., energy/feeling depressed) and with some answer options. Severity of symptoms and not their impact was a common difficulty. A judgement challenge was reported in relation to 7-days recall and fluctuation of symptoms. Layout concerns in relation to length of questions were also stated. All questions were considered important and none as inappropriate. CONCLUSION: This study demonstrated face and content validity and acceptability of the Integrated Palliative Care Outcome Scale in the Greek context. Cognitive Interviewing proved valuable in refining concepts within the specific cultural context. CLINICAL IMPLICATIONS: The IPOS outcome measure tool is now being used routinely in a palliative care service in Athens and is currently used to evaluate service outcomes.

Translation, cultural adaptation, and validation of the Integrated Palliative Outcome Scale-renal (IPOS-r) to Czech.

BACKGROUND: Patients with advanced kidney disease suffer from burdensome symptoms, which should be assessed by valid and reliable patient-reported outcome measures. This study aimed to provide a translation, cultural adaptation, and validation of the Czech version of the IPOS-r. METHODS: The IPOS-r was translated to Czech and culturally adapted using cognitive interviews. During the validation phase, patients and staff in dialysis centres and outpatient renal clinics completed the IPOS-r. Internal consistency was tested with Cronbach's alpha, its reliability via intraclass correlation coefficient for total IPOS-r score, and weighted Kappa (for test-retest and interrater reliability of individual items). Convergent validity was tested with Spearman correlation to Kidney Disease Quality of Life Survey-Short Form 1.2 (KDQOL-SF 1.2). We assessed sensitivity to change using a distribution-based approach. RESULTS: Two sets of translators independently performed forward and backward translations of the IPOS-r. Ten patients and ten health care professionals participated in cognitive pre-testing. The sample size for validation included 88 patients (mean age 66 ± SD13.8; 58% men) who were treated with haemodialysis (70.5%), home haemodialysis (5.5%), peritoneal dialysis (3%), and conservative management (21%). Cronbach's alpha was 0.72, and the intraclass correlation was 0.84 for test-retest reliability and 0.73 for interrater reliability. The IPOS-r correlated with KDQOL-SF 1.2 had a rho between 0.4-0.8 for most of the IPOS-r items, showing good convergent validity. The IPOS-r measure is feasible and takes 9 minutes to complete. Patients who reported a change in health status after 1 month demonstrated a total IPOS-r score change of eight points in both positive and negative directions. CONCLUSIONS: The process of translation and cultural adaptation of the IPOS-r was successful, and the Czech IPOS-r measure is a valid and reliable tool. The Czech IPOS-r can be used to assess symptoms in patients with advanced chronic kidney disease. TRIAL REGISTRATION: GAUK [82121].

Psychometric validation and cross-cultural adaptation of the Integrated Palliative care Outcome Scale in Polish (IPOS-Pol).

OBJECTIVE: The study aimed to assess the reliability and validity of the IPOS-Pol for patient self-reporting. METHOD: Patients (>18 years of age) with advanced cancer admitted to three palliative care centers (inpatient units and home-based) were recruited to a multicenter, cross-sectional, observational, prospective study. Participants provided responses to the IPOS-Pol Patient version and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care (EORTC QLQ-C15-PAL) Polish version at baseline (T1) and four to seven days later (T2). We assessed test-retest reliability, internal consistency, and construct validity of the tool. RESULTS: One hundred and eighty patients were included. Test-retest reliability demonstrated no statistically significant differences in the average outcomes of the IPOS-Pol between T1 and T2 (27.2 ± 9.2 vs. 26.5 ± 8.7; p > 0.05). The intra-class correlation coefficient between T1 and T2 was r = 0.83 (p < 0.0001), the intra-class correlation coefficient for test-retest reliability of the IPOS-Pol items ranged from 0.63 to 0.84 (p < 0.0001), and the Cronbach's α coefficient for internal consistency was 0.773. The correlation coefficient between the IPOS-Pol and EORTC QLQ-C15-PAL total score was 0.79 (p < 0.001). SIGNIFICANCE OF RESULTS: The patient version of the Polish adaptation of IPOS is a valid and reliable outcome measure for assessing symptoms and concerns of individuals receiving palliative care, as well as the quality of care provided.

Did the COVID-19 pandemic (really) positively impact the IPO Market? An Analysis of information uncertainty.

Anecdotal evidence seems to suggest that the initial public offering (IPO) market performed remarkably well through the COVID-19 pandemic. To further understand this peculiar observation, we carry out a comprehensive analysis of IPOs during the pandemic vis-a-vis IPOs before the pandemic. Our findings imply that IPOs during the pandemic experience greater information uncertainty compared to those before the pandemic, and this greater uncertainty is mainly driven by the IPOs from the high-technology and the healthcare sectors. Furthermore, we find that an average IPO firm experiences larger underpricing and more post-IPO return volatility as the pandemic and the associated government responses increase in severity before the offering. Overall, our study indicates that the COVID-19 pandemic had an adverse impact on the IPO market.

A cross-sectional assessment of symptom burden among patients with advanced cervical cancer.

BACKGROUND: The increasing burden of chronic non-communicable diseases in developing countries is driving attention to palliative care services. Identification of disease-specific symptoms of concern and their prevalence will guide designing, monitoring, and evaluating palliative care programmes. This study assessed the burden of symptoms and problems among patients with advanced cervical cancer. METHODS: This research followed a cross-sectional study design to quantitatively review the symptom burden among patients diagnosed with advanced cervical cancer attending treatment at Tikur Anbessa Specialised Hospital, Addis Ababa, Ethiopia from January to July 2019. Symptoms were assessed using a patient-reported, seven-day recall Integrated Palliative Care Outcome Scale (IPOS) version III. Frequency, median and mean scores with a standard deviation were used in the descriptive analysis whereas t-test and one-way analysis of variance were used for comparisons. RESULTS: There were 385 patients with advanced cervical cancer, stage IIB-IVB, successfully interviewed. The median age was 50 years, the majority were illiterate (63.1%) and in marital union (62.3%). Over 50% of the patients experienced pain, weakness, poor appetite, constipation, limited mobility, and dry mouth. The burdens of emotional symptoms such as patient anxiety, family anxiety, and patient depression were also prevalent at 79.7%, 82.3%, and 47.0%, respectively. Patients who are illiterate, at a higher stage of the disease, not currently in marriage, and who received palliative radiotherapy bear a higher symptom burden. CONCLUSION: Patients with advanced cervical cancer bear a high symptom burden. Early initiation of palliative care is recommended to alleviate the concerning symptoms, and to improve patients' quality of life.

Validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) in Singapore.

CONTEXT: Measurement of patient-centred outcomes enables clinicians to focus on patient and family priorities and enables quality of palliative care to be assessed. OBJECTIVES: This study aimed to evaluate the validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) among advanced cancer patients in Singapore. METHODS: IPOS was forward and backward translated from English into Chinese. Structural validity was assessed by confirmatory factor analysis; known-group validity by comparing inpatients and community patients; construct validity by correlating IPOS with Edmonton Symptom Assessment System-revised (ESAS-r) and Functional Assessment of Cancer Therapy-General (FACT-G); internal consistency by Cronbach's alpha; inter-rater reliability between patient and staff responses; test-retest reliability of patient responses between two timepoints. RESULTS: One hundred eleven English-responding and 109 Chinese-responding patients participated. The three-factor structure (Physical Symptoms, Emotional Symptoms and Communication and Practical Issues) was confirmed with Comparative Fit Index and Tucker-Lewis-Index > 0.9 and Root Mean Square Error of Approximation < 0.08. Inpatients scored higher than outpatients as hypothesised. Construct validity (Pearson's correlation coefficient, r ≥ |0.608|) was shown between the related subscales of IPOS and FACT-G and ESAS-r. Internal consistency was confirmed for total and subscale scores (Cronbach's alpha≥0.84), except for the Communication and Practical Issues subscale (Cronbach's alpha = 0.29-0.65). Inter-rater reliability (Intra-class correlation coefficient [ICC] ≤ 0.43) between patient and staff responses was insufficient. Test-retest reliability was confirmed with Intra-class correlation coefficient ICC = 0.80 (English) and 0.88 (Chinese) for IPOS Total. CONCLUSION: IPOS in English and Chinese showed good validity, good internal consistency, and good test-retest reliability, except for the Communication and Practical Issues subscale. There was poor inter-rater reliability between patients and staff.

Psychometric properties of the Czech Integrated Palliative Outcome Scale: reliability and content validity analysis.

BACKGROUND: Outcome measurement is an essential part of the evaluation of palliative care and the measurements need to be reliable, valid and adapted to the culture in which they are used. The Integrated Palliative Outcome Scale (IPOS) is a widely used tool for assessing personal-level outcomes in palliative care. The aim of this study was to provide Czech version of IPOS and assess its psychometric properties. METHODS: Patients receiving palliative care in hospice or hospitals completed the IPOS. The reliability of Czech IPOS was tested with Cronbach alpha (for internal consistency), the intraclass correlation coefficient for total IPOS score and weighted Kappa (for test-retest reliability of individual items). Factor analysis was used for elucidating the construct (Exploratory Factor Analysis). Convergent validity was tested with correlation analysis (Spearman correlation) in a part of the sample, who completed also the Edmonton Symptom Assessment System (ESAS) and the Palliative Performance Scale (PPS). RESULTS: The sample consisted of 140 patients (mean age 72; 90 women; 81% oncological disease). The Cronbach alpha was 0.789; intraclass correlation was 0.88. The correlations of IPOS with ESAS was R = 0.4 and PPS R = - 0.2. Exploratory factor analysis revealed a 2-factor solution on our data. The first factor covers emotional and information needs and the second factor covers physical symptoms. CONCLUSION: Czech IPOS has very good reliability regarding both internal consistency and test-retest reliability. Together with an item analysis results, we can conclude that the Czech adaptation of the tool was successful. The convergent validity needs to be assessed on the larger sample and the proposed 2-factor internal structure of the questionnaire has to be confirmed by using CFA.

Pricing Constraint and the Complexity of IPO Timing in the Stock Market: A Dynamic Game Analysis.

The timing of an initial public offering (IPO) is a complex dynamic game in the stock market. Based on a dynamic game model with the real option, this paper investigates the relationship between pricing constraint and the complexity of IPO timing in the stock market, and further discusses its mechanism. The model shows that the IPO pricing constraint reduced the exercise value of the real option of IPO timing, thus restricting the enterprise's independent timing and promoting an earlier listing. The IPO price limit has a stronger effect on high-trait enterprises, such as technology enterprises. Lowering the upper limit of the pricing constraint increases the probability that enterprises are bound by this restriction during IPO. A high discount cost and stock-market volatility are also reasons for early listing. This paper suggests a theoretical explanation for the mechanism of the pricing constraint on IPO timing in the complex market environment, which is an extension of IPO timing theory, itself an interpretation of the IPO behavior of Chinese enterprises. These findings provide new insights in understanding the complexity of IPOs in relation to the Chinese stock market.

Challenges in a six-phase process of questionnaire adaptation: findings from the French translation of the Integrated Palliative care Outcome Scale.

BACKGROUND: The Integrated Palliative care Outcome Scale (IPOS) was developed for evaluating essential outcomes for palliative care patients. Our objectives here are to describe the process of a six-phase cross-cultural adaptation of IPOS to French (IPOS-Fr), highlight the difficulties encountered and strategies to solve them, and discuss the implications that adaptation may have on the validity and reliability of a questionnaire. METHODS: The adaptation of IPOS consisted of six phases: (i) literature review and interviews with target population; (ii) forward translation to French; (iii) backward translation to English; (iv) Expert Review; (v) cognitive interviews with target population; (vi) final review. RESULTS: Translation, cognitive interviews, and exchanges with Expert Review members allowed to make changes adapted to the target language regarding item 5 ("vomiting") and 8 ("sore or dry mouth"), and to identify and address, in the original version of IPOS, syntactic inconsistencies in language used in items 11 to 15 and methodological problems with items 11 ("anxiety about treatment and illness"), 15 ("share … as much as you wanted") and 17 ("problems addressed"). The adaptation also indicated that patients might have difficulties in interpreting items 8 ("sore or dry mouth"), 10 ("poor mobility"), 11 ("anxiety"), 12 (projected feelings of family and friends), and 14 ("feeling at peace"), thus indicating the need of monitoring during the psychometric validation. CONCLUSIONS: Following this process, IPOS-Fr has proved content and face validity. In our case, the adaptation allowed adjustments to be made to the questionnaire and, when this was not possible, highlighted potential biases and inconsistencies during the validation. The result relied on an intertwined and iterative process of seeking and reaching semantic, conceptual, and normative equivalence. We are now assessing the psychometrical properties of IPOS-Fr.

Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff.

BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context. METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care. RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important. CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

2014 President's plenary international psycho-oncology society: moving toward cancer care for the whole patient.

The International Psycho-oncology Society (IPOS) has just celebrated its 30th anniversary. The growth of psychosocial oncology has been exponential, and this relatively new field is becoming a core service that focuses on prevention, reducing the burden of cancer, and enhancing the quality of life from time of diagnosis, through treatment, survivorship, and palliative care. Looking back over the past 30 years, we see that cancer care globally has evolved to a new and higher standard. Today, 'cancer care for the whole patient' is being accomplished with an evidence-based model that addresses psychosocial needs and integrates psycho-oncology into the treatment and care of patients. The President's Plenary Session in Lisbon, Portugal, highlighted the IPOS Mission of promoting global excellence in psychosocial care of people affected by cancer through our research, public policy, advocacy, and education. The internationally endorsed IPOS Standard of Quality Cancer Care, for example, clearly states the necessity of integrating the psychosocial domain into routine care, and that distress should be measured as the sixth vital sign after temperature, blood pressure, pulse, respiratory rate, and pain. The plenary paper also discussed the global progress being made in Europe, North America, and Australia in providing quality cancer care for the whole patient. Collaborative partnerships between IPOS and organizations such as the European Partnership Action Against Cancer and the World Health Organization are essential in building capacity for the delivery of high-quality psycho-oncology services in the future.

Patient Reported Outcome Measurement (PROM) under real-life conditions of non-curable cancer outpatients with the Integrated Palliative Outcome Scale (IPOS) and NCCN-Distress Thermometer - A mixed methods study.

Objective: Prospective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers. Methods: Assessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis. Results: Ninety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare. Conclusion: To facilitate consequences from PROM it should be a standardized intervention rather than assessment alone. Innovation: The patient perspective improves the implementation of PROM under real-life clinical conditions.

Comparative analysis of symptom burdens and influential factors among diverse terminally-ill patients.

BACKGROUND: The suffering experienced by terminally-ill patients encompasses physiological, psychosocial and spiritual dimensions. While previous studies have investigated symptom burden intensity for specific disease groups, such as cancer or heart failure patients, a research gap exists in understanding major distressing symptoms among diverse terminally-ill patients. This study assessed symptom burden intensity and explored its influential factors among diverse patient disease groups. METHODS: This cross-sectional study utilized the baseline Integrated Palliative care Outcome Scale (IPOS) assessment data. The study participants were terminally-ill patients enrolled in an end-of-life care (EoLC) intervention in Hong Kong. Statistical methods including relative importance index (RII), one-way analysis of variance (ANOVA), and generalized linear regression (GLR) were employed. RESULTS: Final sample consisted of 1,549 terminally-ill patients (mean age =77.4 years, SD =11.6). The five top-rated distressing symptoms among these patients, revealed by the RII analysis, were poor mobility (RII =64.4%), family anxiety (RII =63.5%), sharing feelings with family/friends (RII =61.4%), weakness/lack of energy (RII =58.1%), and hardly feeling at peace (RII =50.7%). One-way ANOVA showed significant differences among the eight disease groups in perceived physical and emotional symptom burden intensity (P<0.05). Analysis of RII symptom scores for each disease group revealed that poor mobility was rated as the most distressing symptom (RII =85.1-62.9%) by patients with motor neurone disease, Parkinson's disease, heart failure, dementia, end-stage renal disease and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases). Perceived family anxiety (RII =66.1%) and shortness of breath (RII =63.8%) were the most distressing symptoms for cancer patients and those with chronic obstructive pulmonary disease, respectively. GLR analysis showed that illness type is the most significant factor influencing the perceived burden intensity in terms of the IPOS total and subscale scores of physical symptoms, emotional symptoms and communication/practical issues. Demographic characteristics such as age, gender, marital status and co-residing status were also identified as influential factors of various symptom categories. However, patients' educational level and relationship with primary caregiver did not significantly influence any perceived symptom burden. CONCLUSIONS: This study provides valuable insights into the symptom burdens experienced by diverse patient disease groups at end-stage of life. The findings highlight the major distressing symptoms of poor mobility, family anxiety, and shortness of breath. Addressing these symptoms is crucial in improving the quality of care for terminally-ill patients. Furthermore, the study identifies influential factors that can affect the perceived intensity of symptom burden, primarily the main type of terminal illness and patient's age. Tailored care support and improved clinical care should be implemented, particularly for high-risk groups such as patients with non-cancer terminal illnesses and older aged patients. These findings contribute to existing literature and emphasize the need for comprehensive and individualized care in EoLC.

Systematic symptom screening in patients with advanced cancer treated in certified oncology centers: results of the prospective multicenter German KeSBa project.

PURPOSE: Guidelines recommend a structured symptom screening (SC) for especially advanced cancer patients (CPs). The aim of this multicenter German prospective quality assurance project KeSBa (Kennzahl Symptom- und Belastungserfassung) was to gain knowledge on SC procedures in Oncology Centers (OCs) for advanced cancer patients and a first impression on the consequences of SC. METHODS: The KeSBa project consisted of three phases: pilot, 3 months screening and feedback phase. Participating OCs decided to use either the Minimal Documentation System (MIDOS) or the Integrated Palliative care Outcome Scale (IPOS) and defined the cutoff values for positive screening results. RESULTS: Out of 172 certified German OCs, 40 (23%) participated in the KeSBa pilot phase, 29 (16.8%) in the 3 months screening phase using MIDOS (n = 18, 58.6%) or IPOS (n = 11, 41.3%) and in the feedback round. 25/29 performed paper-based screening (86.2%). 2.963 CPs were screened. Results were documented for 1255 (42.2%, SC +) positive and 874 (29.5%, SC-) negative screenings depending on the center´s schedules: 452 SC + CPs (28.4%) and 42 SC- CPs (2.6%) had contact to specialized palliative care or other supportive specialist teams afterwards, 458 SC + CPs (28.8%) and 605 SC- CPs (38.1%) remained in standard oncology care. In the feedback round missing resources (personal and IT) and improved communication were mentioned most often. CONCLUSION: Routine SC is feasible in advanced CPs treated in OCs but associated with considerable workload. In 42.2% of CPs SC was classified as positive, indicating the need of further diagnostics or professional judgment. SC requires staff and IT resources.

Sustainability reporting and corporate financial performance of IPOs: witnessing emerging market.

The objective of this paper is to investigate the impact of sustainability reporting (SR) quality on the corporate financial performance (CFP) of initial public offering (IPO) in Malaysia. This research applies the OLS and WLS regressions through content analysis of annual reports. The data was collected from Datastream, where 131 IPOs listed companies on Bursa Malaysia between 2007 and 2017. The findings indicate a positive and negative association between SR and its components with CFP. It is found that there is a negative and significant association between the SR characteristics of employees and products with CFP. However, it was discovered that the societal and environmental components have a significantly positive association with CFP. This finding shows that SR practices might be seen as an attempt to enhance IPO performance. The findings can facilitate financial institutions and regulatory agencies in driving responsibility on the part of companies regarding SR issues. The firms should involve SR practices in their SR decisions. Thus, this study emphasises the significance of combining social and organisational activities.

Sustainability reporting and corporate reputation of Malaysian IPO companies.

The aim of this paper is to explore the relationship between sustainability reporting (SR) and corporate reputation (CR) in the context of initial public offering (IPO) companies in the developing market of Malaysia. This study utilises secondary data from 2007 to 2017 derived from the content analysis of the annual reports and Datastream of 139 sampled IPO companies listed on Bursa Malaysia. The study also employs ordinary least squares (OLS) regression. The result shows that CR has a positive association with SR quantity and quality and its dimensions, i.e., society, environmental, employee, and product. This result suggests that IPO companies can use SR practices to improve their CR. Most companies give little attention to SR issues. More research should be conducted to examine the SR by IPO companies due to the significant role that SR plays in improving the CR of Malaysian IPO companies. The findings can be used by financial institutions and regulatory bodies to encourage companies to be more responsible on SR issues. Businesses should incorporate social practices into their SR decisions. This paper underlines the importance of integrating social and organisational activities.

Palliative Care Outcome Scale Assessment for Cancer Patients Eligible for Palliative Care: Perspectives on the Relationship between Patient-Reported Outcome and Objective Assessments.

(1) Background: The importance of patient-reported outcome (PRO), i.e., prioritizing patient voice, has increased in cancer treatment, as well as palliative and supportive settings. The Integrated Palliative Care Outcome Scale (IPOS), a hybrid evaluation consisting of "patient evaluation" (PRO) and "peer evaluation" by medical professionals, was developed as a successor version of the Support Team Assessment Schedule (STAS) in 2013 and has been utilized worldwide. The Japanese version of the IPOS (IPOS-J) was developed and released in 2019. The purpose of this study was to explore the applicability of the IPOS-J to clinical practice in the future. (2) Methods: We conducted the following two studies with terminally ill cancer patients: (i) Can an evaluation with the IPOS-J performed by medical professionals (peer evaluation) replace the STAS-J evaluation? (ii) Can the quality of palliative care improve by combining the IPOS-J patient evaluation with the peer evaluation? (3) Results: The overall intervention rate and urgent intervention rate for the STAS-J and IPOS-J was 34.4 vs. 34.1% (p = 0.91) and 10.4 vs. 9.9% (p = 0.78), respectively. The patients selected "intervention required" but the medical professionals selected "no intervention required" in 47 cases. The medical team performed appropriate intervention after re-assessment. As a result, more than 70% of the patients were "intervention-free" after 1 week of intervention. (4) Conclusions: The IPOS-J peer evaluation was as useful as the STAS-J evaluation. A hybrid type of evaluation, combining patient evaluation (PRO) and peer evaluation, may help us to understand patient needs and improve the quality of palliative care.

Intelligent Palliative Care Based on Patient-Reported Outcome Measures.

CONTEXT: The growth of patient reported outcome measures data in palliative care provides an opportunity for machine learning to identify patterns in patient responses signifying different phases of illness. OBJECTIVES: The study will explore if machine learning and network analysis can identify phases in patient palliative status through symptoms reported on the Integrated Palliative Care Outcome Scale (IPOS). METHODS: A partly cross-sectional and partially longitudinal observational study was undertaken using the Australasian Karnofsky Performance Scale (AKPS); Integrated Palliative Care Outcome Scale (IPOS); Phase of Illness (POI). Patient palliative records (n = 1507, 65% stable, 20% unstable, 9% deteriorating, 2% terminal) from 804 adult patients enrolled in a New Zealand palliative care service were analysed using a combination of statistical, machine learning and network analysis techniques. RESULTS: Data from IPOS showed considerable variation with phase. Also, network analysis showed clear associations between items by phase. Six machine learning techniques identified the most important variables for predicting possible transition between phases of illness. Network analysis for all patients showed that Poor Appetite and Loss of Energy were central IPOS items, with Loss of Energy linked to Drowsiness, Shortness of Breath and Lack of Mobility on the one hand, and Poor Appetite linked to Nausea, Vomiting, Constipation and Sore and Dry Mouth on the other. CONCLUSION: These preliminary results, when coupled with the latest technological developments in mobile apps and wearable technology, could point the way to increased use of digital therapeutics in continuous palliative care monitoring.

Translation and cultural adaptation of IPOS (integrated palliative care outcome scale) in Estonia.

BACKGROUND: Patient Reported Outcome Measures (PROMs) are questionnaires that could be used in palliative care (PC) to evaluate patient well-being and monitor their care. PROMs enable a focus on what is important to patients by putting the patient at the center of care. Adapting an existing PROM requires considering cultural differences, general usability and understandability of translated terms. AIM: To translate and culturally adapt both the patient and staff three and seven day versions of the Integrated Palliative care Outcome Scale (IPOS) into Estonian. The IPOS consist of 10 questions (staff versions 9 questions) and 17 close ended items. The sub aim is to describe the differences and discrepancies found during the adaptation process and compare the results with previous research. METHODS: The translation and adaptation process of IPOS was conducted using recommended guidelines consisting of six phases and included cognitive interviews with patients (n = 11) and palliative care multidisciplinary team members (n = 8). The study was conducted in two major Estonian hospitals. RESULTS: The Estonian IPOS demonstrated face and content validity, acceptance by patients and staff. As a result of expert group review and cognitive interviews with patients and staff, 9 semantic changes were implemented. CONCLUSIONS: Patient and staff versions of the IPOS with a recall of 3 or 7 days were translated and culturally adapted for Estonia. The Estonian IPOS four versions are ready for use in Estonia.