Acceptability and usefulness of the EORTC 'Write In three Symptoms/Problems' (WISP): a brief open-ended instrument for symptom assessment in cancer patients.

BACKGROUND: The use of open-ended questions supplementing static questionnaires with closed questions may facilitate the recognition of symptoms and toxicities. The open-ended 'Write In three Symptoms/Problems (WISP)' instrument permits patients to report additional symptoms/problems not covered by selected EORTC questionnaires. We evaluated the acceptability and usefulness of WISP with cancer patients receiving active and palliative care/treatment in Austria, Chile, France, Jordan, the Netherlands, Norway, Spain and the United Kingdom. METHODS: We conducted a literature search on validated instruments for cancer patients including open-ended questions and analyzing their responses. WISP was translated into eight languages and pilot tested. WISP translations were pre-tested together with EORTC QLQ-C30, QLQ-C15-PAL and relevant modules, followed by patient interviews to evaluate their understanding about WISP. Proportions were used to summarize patient responses obtained from interviews and WISP. RESULTS: From the seven instruments identified in the literature, only the free text collected from the PRO-CTAE has been analyzed previously. In our study, 161 cancer patients participated in the pre-testing and interviews (50% in active treatment). Qualitative interviews showed high acceptability of WISP. Among the 295 symptoms/problems reported using WISP, skin problems, sore mouth and bleeding were more prevalent in patients in active treatment, whereas numbness/tingling, dry mouth and existential problems were more prevalent in patients in palliative care/treatment. CONCLUSIONS: The EORTC WISP instrument was found to be acceptable and useful for symptom assessment in cancer patients. WISP improves the identification of symptoms/problems not assessed by cancer-generic questionnaires and therefore, we recommend its use alongside the EORTC questionnaires.

International validation of two EORTC questionnaires for assessment of health-related quality of life for patients with high-grade non-Hodgkin lymphoma (QLQ-NHL-HG29) and low-grade non-Hodgkin lymphoma (QLQ-NHL-LG20).

BACKGROUND: Health-related quality of life (HRQOL) is a critical aspect to consider when making treatment decisions for patients with non-Hodgkin-lymphoma (NHL). This international study by the European Organisation for Research and Treatment of Cancer (EORTC) tested the psychometric properties of two newly developed measures for patients with high-grade (HG)- and low-grade (LG)-NHL: the EORTC QLQ-NHL-HG29 and the EORTC QLQ-NHL-LG20 to supplement the core questionnaire (EORTC QLQ-C30). METHODS: Overall, 768 patients with HG-NHL (N = 423) and LG-NHL (N = 345) from 12 countries completed the QLQ-C30, QLQ-NHL-HG29/QLQ-NHL-LG20 and a debriefing questionnaire at baseline, and a subset at follow-up for either retest (N = 125/124) or responsiveness to change (RCA; N = 98/49). RESULTS: Confirmatory factor analysis showed an acceptable to good fit of the 29 items of the QLQ-NHL-HG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/functioning [WH]), and of the 20 items of the QLQ-NHL-LG20 on its four scales (SB, PF, EI, and WH). Completion took on average 10 minutes. Test-retest reliability, convergent validity, known-group comparisons, and RCA find satisfactory results of both measures. A total of 31%-78% of patients with HG-NHL and 22%-73% of patients with LG-NHL reported symptoms and/or worries (e.g., tingling in hands/feet, lack of energy, and worries about recurrence). Patients reporting symptoms/worries had substantially lower HRQOL compared to those without. DISCUSSION: The use of the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20 questionnaires in clinical research and practice will provide clinically relevant data to better inform treatment decision-making. PLAIN LANGUAGE SUMMARY: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group developed two questionnaires. These questionnaires measure health-related quality of life. The questionnaires are for patients with high-grade or low-grade non-Hodgkin lymphoma. They are called the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20. The questionnaires are now internationally validated. This study demonstrates that the questionnaires are reliably and valid, which are important aspects of a questionnaire. The questionnaires can now be used in clinical trials and practice. With the information gathered from the questionnaires, patients and clinicians can better evaluate treatments and discuss the best choice for a patient.

A qualitative exploration of goals-of-care discussions with seriously ill patients in Jordan.

OBJECTIVES: This study aims to explore seriously ill patients' experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan. METHODS: This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs. RESULTS: Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity. SIGNIFICANCE OF RESULTS: Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

International validation of the EORTC QLQ-CLL17 questionnaire for assessment of health-related quality of life for patients with chronic lymphocytic leukaemia.

Selecting the most appropriate chronic lymphocytic leukaemia (CLL) treatment is challenging. Patient-reported health-related quality of life (HRQoL) is therefore a critical aspect to consider. This international study by the European Organization for Research and Treatment of Cancer (EORTC) tested the psychometric properties of a newly developed measure for CLL patients: the EORTC QLQ-CLL17 to supplement the core questionnaire (EORTC QLQ-C30). Patients with CLL (n = 341) from 12 countries completed the QLQ-C30, QLQ-CLL17 and a debriefing questionnaire. Sociodemographic and clinical data were recorded from medical records. A high percentage (30%-66%) reported symptoms and/or worries (e.g. aches/pains in muscles, lack of energy and worry/fears about health). Confirmatory factor analysis showed an acceptable to good fit of the 17 items on the three scales (i.e. symptom burden, physical condition/fatigue and worries/fears about health and functioning). Completion took on average 8 min. Test-retest and convergent validity was demonstrated. The QLQ-CLL17 differentiated between patients with an Eastern Cooperative Oncology group (ECOG) performance of 0 versus 1-3 (p's < 0.01 and clinically relevant). The newly developed EORTC QLQ-CLL17 will increase sensitivity of HRQoL assessment in patients with CLL. Implementation of this questionnaire both in clinical research and practice will help to generate unique clinically relevant data to better inform CLL treatment decision-making.

The burden of serious health-related suffering among cancer decedents: Global projections study to 2060.

BACKGROUND: Palliative care improves outcomes for people with cancer, but in many countries access remains poor. Understanding future needs is essential for effective health system planning in response to global policy. AIM: To project the burden of serious health-related suffering associated with death from cancer to 2060 by age, gender, cancer type and World Bank income region. DESIGN: Population-based projections study. Global projections of palliative care need were derived by combining World Health Organization cancer mortality projections (2016-2060) with estimates of serious health-related suffering among cancer decedents. RESULTS: By 2060, serious health-related suffering will be experienced by 16.3 million people dying with cancer each year (compared to 7.8 million in 2016). Serious health-related suffering among cancer decedents will increase more quickly in low income countries (407% increase 2016-2060) compared to lower-middle, upper-middle and high income countries (168%, 96% and 39% increase 2016-2060, respectively). By 2060, 67% of people who die with cancer and experience serious health-related suffering will be over 70 years old, compared to 47% in 2016. In high and upper-middle income countries, lung cancer will be the single greatest contributor to the burden of serious health-related suffering among cancer decedents. In low and lower-middle income countries, breast cancer will be the single greatest contributor. CONCLUSIONS: Many people with cancer will die with unnecessary suffering unless there is expansion of palliative care integration into cancer programmes. Failure to do this will be damaging for the individuals affected and the health systems within which they are treated.

Compounded trauma: A qualitative study of the challenges for refugees living with advanced cancer.

BACKGROUND: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. AIM: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. DESIGN: A qualitative study using semi-structured interviews. SETTING/PARTICIPANTS: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. RESULTS: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment. CONCLUSIONS: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.

The economic burden of cancer care for Syrian refugees: a population-based modelling study.

BACKGROUND: Cancer represents a substantial health burden for refugees and host countries. However, no reliable data on the costs of cancer care for refugees are available, which limits the planning of official development assistance in humanitarian settings. We aimed to model the direct costs of cancer care among Syrian refugee populations residing in Jordan, Lebanon, and Turkey. METHODS: In this population-based modelling study, direct cost per capita and per incident case for cancer care were estimated using generalised linear models, informed by a representative dataset of cancer costs drawn from 27 EU countries. A range of regression specifications were tested, in which cancer costs were modelled using different independent variables: gross domestic product (GDP) per capita, crude or age-standardised incidence, crude or age-standardised mortality, and total host country population size. Models were compared using the Akaike information criterion. Total cancer care costs for Syrian refugees in Jordan, Lebanon, and Turkey were calculated by multiplying the estimated direct cancer care costs (per capita) by the total number of Syrian refugees, or by multiplying the estimated direct cancer costs (per incident case [crude or age-standardised]) by the number of incident cancer cases in Syrian refugee populations. All costs are expressed in 2017 euros (€). FINDINGS: Total cancer care costs for all 4·74 million Syrian refugees in Jordan, Lebanon, and Turkey in 2017 were estimated to be €140·23 million using the cost per capita approach, €79·02 million using the age-standardised incidence approach, and €33·68 million using the crude incidence approach. Under the lowest estimation, and with GDP and total country population as model predictors, the financial burden of cancer care was highest for Turkey (€25·18 million), followed by Lebanon (€6·40 million), and then Jordan (€2·09 million). INTERPRETATION: Cancer among the Syrian refugee population represents a substantial financial burden for host countries and humanitarian agencies, such as the UN Refugee Agency. New ways to provide financial assistance need to be found and must be coupled with clear, prioritised pathways and models of care for refugees with cancer. FUNDING: UK Research and Innovation Global Challenges Research Fund: Research for Health in Conflict-Middle East and North Africa region (R4HC-MENA).

Psychometric properties of the updated EORTC module for assessing quality of life in patients with lung cancer (QLQ-LC29): an international, observational field study.

BACKGROUND: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Lung Cancer 13 (QLQ-LC13) assesses quality of life (QOL) in patients with lung cancer and was the first EORTC module developed for use in international clinical trials. Since its publication in 1994, major treatment advances with possible effects on QOL have occurred. These changes called for an update of the module and its international psychometric validation. We aimed to investigate the scale structure and psychometric properties of the updated lung cancer module, QLQ-LC29, in patients with lung cancer. METHODS: This international, observational field study was done in 19 hospitals across 12 countries. Patients aged older than 18 years with a confirmed diagnosis of lung cancer and no other previous primary tumour, and who were mentally fit with sufficient language skills to understand and complete the questionnaire were included. Patients were asked during a hospital visit to fill in the paper versions of the core questionnaire EORTC QLQ-C30 plus QLQ-LC29, and investigators selected half of these patients to complete the questionnaire again 2-4 weeks later. Our primary aim was to assess the scale structure and psychometric properties of EORTC QLQ-LC29. We analysed scale structure using confirmatory factor analysis; reliability using Cronbach's α value (internal consistency) and intra-class coefficient (test-retest reliability); sensitivity using independent t tests stratified by Karnofsky performance status; and responsiveness to change over time by ANOVA. This study is registered with ClinicalTrials.gov, NCT02745691. FINDINGS: Between April 12, 2016, and Sept 26, 2018, 523 patients with a confirmed diagnosis of either non-small-cell lung cancer (n=442) or small-cell lung cancer (n=81) were recruited. Confirmatory factor analysis provided a solution composed of five multi-item scales (coughing, shortness of breath, fear of progression, hair problems, and surgery-related symptoms) plus 15 single symptom or side-effect items: χ2=370·233, root mean square error of approximation=0·075, and comparative-fit index=0·901. Cronbach's α for internal consistencies of all multi-item scales were above the threshold of 0·70. Intra-class coefficients for test-retest reliabilities ranged between 0·82 and 0·97. Three (shortness of breath, fear of progression, and hair problems) of the five multi-item scales showed responsiveness to change over time (p values <0·05), as did nine of 15 single symptom items. Four (coughing, shortness of breath, fear of progression, and surgery-related symptoms) of the five multi-item scales and ten of the 15 single symptom items were sensitive to known group differences (ie, lower vs higher Karnofsky performance status). INTERPRETATION: Results determined the psychometric properties of the updated lung cancer module, which is ready for use in international clinical studies. FUNDING: EORTC Quality of Life Group.

Meaning in life in patients with advanced cancer: a multinational study.

BACKGROUND: Few studies have examined meaning in life, a novel existential outcome, in patients with advanced cancer across countries. OBJECTIVES: We examined differences in meaning in life across 5 countries and identified factors associated with meaning in life. METHODS: This is a pre-planned secondary analysis of a prospective longitudinal multicenter observational study of patients with advanced cancer. Meaning in life was assessed using a validated scale which examined four domains of meaning: values, purpose, goals, and reflection. The total score ranged from 8 to 32, with a higher score indicating greater meaning in life. RESULTS: Among 728 patients, the median meaning in life score was 25/32 (interquartile range 23, 28). There was no significant difference in the total meaning in life score among 5 countries (P = 0.11), though there were differences in domain sub-scores. In the univariate analysis, patients with higher intensity of physical symptoms by ESAS score (pain, fatigue, drowsiness, dyspnea, insomnia), depression, anxiety, spiritual pain, and financial distress had significantly lower meaning in life. However, patients with higher levels of education, who were married, and who had higher optimism had significantly higher meaning in life. In the multivariate analysis, higher total meaning in life scores were significantly associated with greater optimism (multivariate estimate = 0.33, p < 0.001), lower depression (- 0.26, < 0.001), spiritual pain (- 0.19, < 0.001), and financial distress (- 0.16, < 0.001). CONCLUSION: Country of origin was not a determinant of meaning in life. However, meaning in life was significantly associated with optimism, depression, spiritual pain, and financial distress, underscoring the multidimensional nature of this construct and potential opportunities for improvement in addressing meaning in life of patients with advanced cancer.

Developing institutions for cancer care in low-income and middle-income countries: from cancer units to comprehensive cancer centres.

Global cancer centres operate across different sizes, scales, and ecosystems. Understanding the essential aspects of the creation, organisation, accreditation, and activities within these settings is crucial for developing an affordable, equitable, and quality cancer care, research, and education system. Robust guidelines are scarce for cancer units, cancer centres, and comprehensive cancer centres in low-income and middle-income countries. However, some robust examples of the delivery of complex cancer care in centres in emerging economies are available. Although it is impossible to create an optimal system to fit the unique needs of all countries for the delivery of cancer care, we summarise what has been published about the development and management of cancer centres in low-income and middle-income countries so far and highlight the need for clinical and political leadership.

Perception of Curability Among Advanced Cancer Patients: An International Collaborative Study.

BACKGROUND: There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. MATERIALS AND METHODS: Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. RESULTS: Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer," and 47% perceived themselves as "seriously ill." Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p = .027), higher education (OR 0.37, p < .0001), unemployment status (OR 0.69, p = .02), and being from France (OR 0.26, p < .0001) and South Africa (OR 0.52, p = .034); inaccurate perception of curability was associated with better Karnofsky performance status (OR 1.02 per point, p = .0005), and being from Philippines (OR 15.49, p < .0001), Jordan (OR 8.43, p < .0001), Brazil (OR 2.17, p = .0037), and India (OR 2.47, p = .039). CONCLUSION: Inaccurate perception of curability in advanced cancer patients is 55% and significantly differs by gender, education, performance status, employment status, and country of origin. Further studies are needed to develop strategies to reduce this misperception of curability in advanced cancer patients. IMPLICATIONS FOR PRACTICE: The findings of this study indicate that inaccurate perception of curability among advanced cancer patients is 55%. Inaccurate perception of curability significantly differs by gender, education, performance status, employment status, and country of origin. There is great need to facilitate improved patient-physician communication so as to improve health care outcomes and patient satisfaction.

Decisional control preferences among patients with advanced cancer: An international multicenter cross-sectional survey.

BACKGROUND: Understanding patients' decision control preferences is important in providing quality cancer care. Patients' decisional control preference can be either active (patients prefer to make decisions themselves), shared (collaborative between patient, their physician, and/or family), or passive (patients prefer that the decisions are made by either the physician and/or their family). AIM: To determine the frequency and predictors of passive decision control preferences among advanced cancer patients. We also determined the concordance between actual decision-making and decision control preferences and its association with patient satisfaction. DESIGN: In this cross-sectional survey of advanced cancer patients referred to palliative care across 11 countries, we evaluated sociodemographic variables, Control Preference Scale, and satisfaction with the decisions and care. RESULTS: A total of 1490 participants were evaluable. Shared, active, and passive decision control preferences were 33%, 44%, and 23%, respectively. Passive decision control preferences (odds ratio, p value) was more frequent in India (4.34, <0.001), Jordan (3.41, <0.001), and France (3.27, <0.001). Concordance between the actual decision-making and decision control preferences was highest in the United States ( k = 0.74) and lowest in Brazil (0.34). Passive decision control preference was significantly associated with (odds ratio per point, p value) better performance status (0.99/point, 0.017), higher education (0.64, 0.001), and country of origin (Brazil (0.26, <0.0001), Singapore (0.25, 0.0003), South Africa (0.32, 0.0002), and Jordan (2.33, 0.0037)). CONCLUSION: Passive decision control preferences were less common (23%) than shared and active decision control preference even among developing countries. Significant predictors of passive decision control preferences were performance status, education, and country of origin.

Impact of outpatient palliative care (PC) on symptom burden in patients with advanced cancer at a tertiary cancer center in Jordan.

PURPOSE: Outpatient palliative care clinics are essential for early symptom management in patients with advanced cancer. Few outpatient programs are available in the Middle East. In this prospective study, we examined the symptom changes among cancer patients seen at a palliative care clinic in Jordan. METHODS: Patients with advanced cancer who had an outpatient palliative care consultation and not delirious were enrolled. The Edmonton Symptom Assessment System (ESAS), Karnofsky Performance Scale (KPS), and Memorial Delirium Assessment Scale (MDAS) were collected at consultation and follow up visit 14-34 days later. We compared symptom changes using paired t test. RESULTS: Among the 182 enrolled patients, the average age was 53 years, 47 % were females, and 95 % had stage IV cancer. The median duration between the two clinic visits was 21 days (interquartile range 15-28). KPS decreased between visits (mean 68 vs. 66 %, P = 0.004). ESAS pain (5.9 vs. 5.1, P = 0.004) and sleep (4.6 vs. 4.1, P = 0.007) improved significantly over time. The remaining ESAS symptoms decreased in intensity, albeit not statistically significant. Among patients who presented with moderate to severe symptom intensity, pain (7 vs. 6, P < 0.0001), fatigue (7 vs. 6, P = 0.003), nausea (7 vs. 4, P < 0.0001), depression (7 vs. 5, P = 0.0008), anxiety (7 vs. 5, P < 0.0001), drowsiness (6 vs. 5, P < 0.001), appetite (7 vs. 6, P = 0.0007), well-being (7 vs. 6, P < 0.0001), dyspnea (6 vs. 5, P = 0.0006), and sleep (7 vs. 5, P < 0.0001) all improved significantly. CONCLUSIONS: Our outpatient palliative care consultation was associated with improvement in ESAS, particularly for patients who presented with moderate to severe symptoms. Further studies are needed to examine predictors of symptom response, longer term outcomes, and how to improve access to outpatient palliative care in the Middle East.

Personalized symptom goals and response in patients with advanced cancer.

BACKGROUND: Improving symptoms is a major goal of cancer medicine; however, symptom response is often based on group differences and not individualized. In the current study, the authors examined the personalized symptom goal (PSG) for 10 common symptoms in patients with advanced cancer, and identified the factors associated with PSG response. METHODS: In this prospective, longitudinal, multicenter study, patients from 5 tertiary care hospitals rated the intensity of 10 symptoms using a numeric rating scale of 0 to 10 at the time of their first clinic visit and then at a second visit 14 to 34 days later. The PSG was determined for each symptom by asking patients: "At what level would you feel comfortable with this symptom?" using the same scale of 0 to 10 for symptom intensity. PSG response was defined as symptom intensity at the time of the second visit that was less than or equal to the PSG. RESULTS: Among 728 patients, the median PSG was 1 for nausea; 2 for depression, anxiety, drowsiness, well-being, dyspnea, and sleep; and 3 for pain, fatigue, and appetite. A greater percentage of patients achieved a PSG response at their second visit compared with their first visit (P<.05 except for drowsiness). Symptom response was associated with lower baseline symptom intensity based on PSG criterion but higher baseline symptom intensity based on the traditional minimal clinically important difference definition (P<.001 for all symptoms). In multivariable analysis, higher PSG and nationality were associated with greater PSG response. CONCLUSIONS: The PSG was ≤3 for a majority of patients. PSG response allows clinicians to tailor treatment goals while adjusting for individual differences in scale interpretation and factors associated with symptom response. Cancer 2016;122:1774-81. © 2016 American Cancer Society.

Minimal clinically important differences in the Edmonton Symptom Assessment Scale in cancer patients: A prospective, multicenter study.

BACKGROUND: The Edmonton Symptom Assessment Scale (ESAS) is widely used for symptom assessment in clinical and research settings. A sensitivity-specificity approach was used to identify the minimal clinically important difference (MCID) for improvement and deterioration for each of the 10 ESAS symptoms. METHODS: This multicenter, prospective, longitudinal study enrolled patients with advanced cancer. ESAS was measured at the first clinic visit and at a second visit 3 weeks later. For each symptom, the Patient's Global Impression ("better," "about the same," or "worse") was assessed at the second visit as the external criterion, and the MCID was determined on the basis of the optimal cutoff in the receiver operating characteristic (ROC) curve. A sensitivity analysis was conducted through the estimation of MCIDs with other approaches. RESULTS: For the 796 participants, the median duration between the 2 study visits was 21 days (interquartile range, 18-28 days). The area under the ROC curve varied from 0.70 to 0.87, and this suggested good responsiveness. For all 10 symptoms, the optimal cutoff was ≥1 point for improvement and ≤-1 point for deterioration, with sensitivities of 59% to 85% and specificities of 69% to 85%. With other approaches, the MCIDs varied from 0.8 to 2.2 for improvement and from -0.8 to -2.3 for deterioration in the within-patient analysis, from 1.2 to 1.6 with the one-half standard deviation approach, and from 1.3 to 1.7 with the standard error of measurement approach. CONCLUSIONS: ESAS was responsive to change. The optimal cutoffs were ≥1 point for improvement and ≤-1 point for deterioration for each of the 10 symptoms. Our findings have implications for sample size calculations and response determination.

National Palliative Care Strategy in a Conflict Affected Country: A Jordanian Demonstration Project.

CONTEXT: Palliative care (PC) integration is vital, as endorsed by the World Health Organization. Yet, Jordan, a Middle Eastern country with limited resources, faces ongoing challenges despite efforts to improve palliative and home care. Establishing a national PC strategic framework, with government and stakeholder consensus, is essential for ensuring universal access to high-quality palliative care. However, processes for achieving this, particularly in the Middle East, are underreported. OBJECTIVES: This study delineates the process of developing Jordan's National Palliative and Home Care Strategic Framework, reflecting on its five-year impact. Additionally, it identifies barriers to PC progress in Jordan and offers recommendations to stakeholders. METHODS: We conducted a rapid review and analyzed reports, minutes, meetings, and publications. The sequential framework development involved content and situational analysis, expert review, transparent expert consultation, multistage consensus procedures, and high-level advocacy meetings. RESULTS: The National Palliative and Home Care Strategic Framework encompasses six domains: 1) policy, 2) finance, 3) service delivery, 4) opioid access, 5) capacity building, and 6) information, research, monitoring, and evaluation. Government endorsement in April 2018 ignited national engagement, driving policy, service delivery, workforce development, education, training, and research progress. Nonetheless, workforce shortages, limited opioid access, and inadequate funding persist as barriers. CONCLUSION: Jordan's collaborative development of the inaugural National Palliative and Home Care Strategic Framework, endorsed by the government and stakeholders, provides a comprehensive roadmap for PC advancement. While it promises improved services, effective solutions to workforce and opioid access issues are crucial for successful implementation.