Systemic Barriers to Optimal Cancer Care in Resource-Limited Countries: Jordanian Healthcare as an Example.

This narrative review explores the multifaceted barriers hindering access to quality cancer care in Jordan. A literature-based narrative review was undertaken to explore the current identified barriers to cancer care in Jordan. Four databases were searched using relevant keywords to identify key insights on barriers and proposed solutions. Key challenges and potential solutions were identified based on evidence from studies, reports, and initiatives. Medical services and infrastructure exhibit centralized disparities, impacting rural and underserved areas. Human resources shortages, geopolitical instability, and quality management issues pose significant challenges. Public awareness campaigns face hurdles in addressing the tobacco epidemic and late-stage diagnosis. Socioeconomic disparities, particularly in health insurance and urban-rural divides, further compound barriers. Refugees encounter distinct challenges, including late-stage diagnosis, financial barriers, and psychological distress. Despite multiple challenges, Jordan presents a model for regional development and health equity. This study not only contributes to improving cancer care in Jordan but also offers a roadmap for policymakers, healthcare practitioners, and researchers in similar contexts globally. Government initiatives, financial aspects, and proposed policy measures are examined as potential solutions. Recommendations include coordinated prevention strategies, enhanced screening uptake, training programs, the equitable distribution of facilities, and policy directives aligned with global commitments. The role of digital technologies, telemedicine, and community engagement models is emphasized.

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.

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.

The effectiveness of progressive muscle relaxation technique in reducing cancer-related pain among palliative care patients: A randomized controlled trial.

Purpose: Cancer-related pain (CRP) is a common and distressing symptom experienced by many patients receiving palliative care. The purpose of this trial was to evaluate the effectiveness of the progressive muscle relaxation (PMR) technique in reducing CRP in patients receiving palliative care. Methods: A total of 148 patients diagnosed with cancer and receiving palliative care were randomly allocated to either an intervention or control group. The intervention group received a 4-week daily course of PMR technique, while the control group received only usual care. Data was collected using a demographic and clinical characteristics form, as well as the Brief Pain Inventory (BPI). Blind evaluations were conducted prior to the start of the intervention (T0), at the end of the 4-week PMR intervention (T1), and at 1-month follow-up (T2). Results: The results of this trial demonstrated a significant decrease in pain intensity scores for the PMR group compared to the control group at both T1 and T2 (p < 0.05). Furthermore, the PMR group also exhibited significant improvements in pain interference with general activity, mood, relations with others, sleep, and enjoyment of life scores compared to the control group at both T1 and T2 (p < 0.05). Conclusion: The results of this trial suggest that the PMR technique may be an effective intervention for reducing pain intensity and improving pain interference with life activities in cancer patients receiving palliative care. However, further research is needed to provide more robust evidence for the effectiveness of this intervention.Clinical trial registration number: NCT04436705. Registered at ClinicalTrials.gov.

Aggressiveness of Cancer Care at End of Life in Patients with Metastatic Breast Cancer in Jordan.

Background: Contrary to Western societies, more than 15% of patients with breast cancer in Jordan are diagnosed with stage IV disease. In this study, we evaluate the value of early palliative care integration in the end-of-life care of such patients. Methods: All consecutive adult patients who died between 2014 to 2018, while under the care of our institution, with a confirmed diagnosis of breast cancer at the time of death, irrespective of place of death, were retrospectively reviewed. Results: During the study period, a total of 433 patients, median age 51.6 years, were included in the analysis. Among the whole group, 102 (23.6%) were referred to palliative care service early (≥30 days prior to death), 182 (42.0%) had late referral (<30 days from death), while 149 (34.4%) were never referred and were followed up by their medical oncologists. During the last 30 days prior to death, patients who were never referred to palliative care were more likely to visit the Emergency Room (ER) more than once (OR 1.89, 95% CI 1.20-2.99, p = 0.006), more likely to be admitted to the hospital more than once (OR 2.27, 95% CI 1.38-3.73, p = 0.001), and more likely to be admitted to the intensive care unit (ICU) (OR 3.07, 95% CI 1.48-6.38, p = 0.0027). Fewer patients in the "no referral" group died with advance directives compared to those who had early or late referral; 60.8%, 75.0% and 82.5%, respectively, p = 0.0003. Survival of patients followed by medical oncologist was not better than those referred to palliative care, either late or early; median survival was 19.0, 19.1 and 23.8 months, respectively (p = 0.2338). Conclusion: Findings suggest that earlier palliative care referral is associated with less aggressive end-of-life care, leading to less frequent ER visits, hospital and ICU admissions during the last month of life, and does not compromise survival.

International validation of a health-related quality-of-life questionnaire for Hodgkin lymphoma: the EORTC QLQ-HL27.

Hodgkin lymphoma (HL) has become 1 of the most curable cancers. Therefore, rigorous assessment of health-related quality of life (HRQoL) and symptom burden of these patients is essential to support informed clinical decisions. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group previously developed the EORTC Quality of Life Questionnaire (QLQ) Hodgkin Lymphoma 27. This paper reports the final results of an international study by the EORTC group to develop a HRQoL disease-specific measure for these patients: the EORTC QLQ-HL27. Patients with a confirmed diagnosis of HL (N = 381) were enrolled from 12 countries and completed the EORTC QLQ-C30, QLQ-HL27, and a debriefing questionnaire at baseline (any time after diagnosis). A subset completed a retest (n = 126) or responsiveness-to-change analyses (RCA) second measurement (n = 98). Psychometrics were evaluated. Confirmatory factor analysis showed an acceptable fit of the 27 items of the QLQ-HL27 on its 4 scales (symptom burden, physical condition/fatigue, emotional impact, and worries about health/functioning). Test-retest reliability, convergent validity, known-group comparisons, and RCA find satisfactory results. Symptom burden and fatigue was higher among patients on treatment (with 36%-83% reporting at least a few problems) compared with those who had completed treatment (19%-61% reporting at least a few problems). Prevalence of worries about health and functioning (reporting at least some worry) was similar for patients on treatment (51%-81%) vs those who had completed treatment (52%-78%). Implementation of the EORTC QLQ-HL27 in research and clinical applications will increase sensitivity of HRQoL assessment in patients with HL. High quality data generated through use of this questionnaire are expected to facilitate clinical decision making in the HL setting.

The challenges of international collaboration in conflict and health research: experience from the Research for Health in Conflict-Middle East and North Africa (R4HC-MENA) partnership.

BACKGROUND: Healthcare is a basic human right extending across all humanitarian contexts, including conflict. Globally, two billion people are living under conditions of insecurity and violent armed conflict with a consequent impact on public health. Health research in conflict-affected regions has been recognised as important to gain more understanding of the actual needs of such populations, to optimise healthcare delivery, as well as to inform advocacy and policy change. International collaborative research maximises the resources and skills available for dealing with global health issues, builds capacity and endeavours to ensure the research reflects real needs of the populations. Under the UK's Global Challenge Research Fund in 2017 a number of such international programs were created including the Research for Health in Conflict-Middle East and North Africa (R4HC-MENA) partnership to build capacity in conflict and health research as well as study specific areas, namely noncommunicable diseases in conflict (cancer & mental health) and the political economy of health in conflict. METHODS: A qualitative study using semi-structured online interviews was conducted to explore researchers' and stakeholders' perspectives on the R4HC-MENA programme over its lifetime from 2017 to 2021. It aimed to understand the factors that influenced and accelerated international collaboration within the R4HC-MENA programme on conflict and health research, and to provide deeper insights into the implementation of the programme. Data collection was conducted from March 2022 to June 2022. Purposive and snowball sampling techniques were used for participant recruitment. Thematic analysis was applied for data analysis. RESULTS: Twelve researchers/stakeholders participated in this study: four men and eight women. Four main themes were generated: Theme 1: Network building (personal and institutional levels); Theme 2: Hierarchies and power dynamics (power imbalance between different academic status, genders and institutions); Theme 3: Communication challenges; Theme 4: Career development (management, leadership, research, and teaching skills). CONCLUSIONS: This study provided preliminary insights into perspectives on international collaboration in a major international programme of research on conflict and health. Several key challenges and outputs were generated by the researchers in this study. The findings are important for further developing effective strategies to tackle the challenge of power imbalance and ineffective communication in international research collaborations.

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.

Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study.

Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Methods: A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Findings: Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion: The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.

Providing person-centered palliative care in conflict-affected populations in the Middle East: What matters to patients with advanced cancer and families including refugees?

Introduction: Universal health coverage highlights palliative care as an essential component of health services. However, it is unclear what constitutes person-centered care in populations affected by conflict, as they may have specific concerns in the dimensions of physical, emotional, social, and spiritual wellbeing. This study aimed to identify what matters to patients with advanced cancer and family caregivers in Jordan including refugees, to inform appropriate person-centered assessment and palliative care in conflict-affected populations. Methods: Cross-sectional face-to-face, semi-structured interviews were conducted at two sites in Amman. Adult patients with advanced cancer and family caregivers were purposively sampled to maximize diversity and representation. Interviews were digitally audio recorded, anonymized, and transcribed verbatim for thematic analysis. Findings: Four themes were generated from 50 patients (22 refugees; 28 Jordanians) and 20 caregivers (7 refugees; 13 Jordanians) (1). Information, communication, and decision-making. Truth-telling and full disclosure from clinicians was valued, and participants expressed concerns that information was not shared in case patients would disengage with treatment. (2) Priorities and concerns for care and support. Participants' top priority remained cure and recovery (which was viewed as possible). Other priorities included returning to their "normal" life and their "own" country, and to continue contributing to their family. (3) Role of spirituality and Islam. Most participants had strong faith in God and felt that having faith could comfort them. For refugees whose social network was fractured due to being away from home country, prayer and Quran reading became particularly important. (4) Unmet support needs of family caregivers. Family caregivers were affected physically and emotionally by worrying about and caring for the patients. They needed support and training, but often could not access this. Discussion: Truth-telling is highly valued and essential to achieving person-centered care and informed decision-making. This study also reveals specific concerns in conflict-affected populations, reflecting the experience of prior losses and fracturing of existing social networks and support. The role of religion is crucial in supporting refugee communities, and consideration should be paid to the needs of patients and caregivers when caring for a patient at home without access to their communities of origin and the support they accessed.

Decision-Making Preferences among Advanced Cancer Patients in a Palliative Setting in Jordan.

Understanding patients' decision-making preferences is crucial for enhancing patients' outcomes. The current study aims to identify Jordanian advanced cancer patients' preferred decision-making and to explore the associated variables of the passive decision-making preference. We used a cross-sectional survey design. Patients with advanced cancer referred to the palliative care clinic at a tertiary cancer center were recruited. We measured patients' decision-making preferences using the Control Preference Scale. Patients' satisfaction with decision-making was assessed with the Satisfaction with Decision Scale. Cohen's kappa statistic was used to assess the agreement between decision-control preferences and actual decision-making, and the bivariate analysis with 95% CI and the univariate and multivariate logistic regression were used to examine the association and predictors of the demographical and clinical characteristics of the participants and the participants' decision-control preferences, respectively. A total of 200 patients completed the survey. The patients' median age was 49.8 years, and 115 (57.5%) were female. Of them, 81 (40.5%) preferred passive decision control, and 70 (35%) and 49 (24.5%) preferred shared and active decision control, respectively. Less educated participants, females, and Muslim patients were found to have a statistically significant association with passive decision-control preferences. Univariate logistic regression analysis showed that, being a male (p = 0.003), highly educated (p = 0.018), and a Christian (p = 0.006) were statistically significant correlates of active decision-control preferences. Meanwhile, the multivariate logistic regression analysis showed that being a male or a Christian were the only statistically significant predictors of active participants' decision-control preferences. Around 168 (84%) of participants were satisfied with the way decisions were made, 164 (82%) of patients were satisfied with the actual decisions made, and 143 (71.5%) were satisfied with the shared information. The agreement level between decision-making preferences and actual decision practices was significant (ⱪ coefficient = 0.69; 95% CI = 0.59 to 0.79). The study's results demonstrate that a passive decision-control preference was prominent among patients with advanced cancer in Jordan. Further studies are needed to evaluate decision-control preference for additional variables, such as patients' psychosocial and spiritual factors, communication, and information sharing preferences, throughout the cancer trajectory so as to inform policies and improve practice.

Concerns and priority outcomes for children with advanced cancer and their families in the Middle East: A cross-national qualitative study.

Introduction: Palliative care access is limited in the Middle-East, with few specialist centers and forcibly displaced migrants facing additional struggles to access care. Little is known about the specificities of providing palliative care to children and young people (CYP) with cancer. They are rarely asked directly their concerns and needs, which limits the provision of quality patient-centered care. Our study aims to identify the concerns and needs of CYP with advanced cancer and their families, in Jordan and Turkey. Method: A qualitative cross-national study in Jordan and Turkey with framework analysis was conducted two pediatric cancer centers in Jordan and Turkey. In each country, 25 CYP, 15 caregivers and 12 healthcare professionals participated (N=104). Most caregivers (70%) and healthcare professionals (75%) were women. Results: We identified five areas of concern: (1) Physical pain and other symptoms (e.g. mobility, fatigue); (2) Psychological concerns and needs (e.g. anger, psychological changes); (3) Spirituality, uncertainty over the future and use of "Tawakkul" (e.g. use of religion as a coping mechanism); (4) Negative impact on social life (e.g. social isolation, loss of support); (5) Burden on caregiver and their families (e.g. financial issues, siblings left behind). Psychological concerns were a priority for both CYPs and caregivers (particularly for refugee and displaced families) but often overlooked during routine care. CYP were able to share their own concerns and care priorities. Conclusions: Advanced cancer care must ensure assessment and management of concerns across the concerns identified. Developing child- and family-centered outcomes would ensure monitoring the quality of care. Spirituality had a more important role compared to similar investigation in other regions.

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.

Validation of the Arabic Version of the Edmonton Symptom Assessment System.

Quality cancer care is a team effort. In addition, patients' symptoms change over the course of treatment. As such, the Edmonton Symptom Assessment System (ESAS) is a simple tool designed to quickly monitor symptom change. Here, we present the results from a two-phase study aimed at validating the Arabic version of the ESAS (ESAS-A). Phase one involved the creation of two versions of the ESAS with both reverse and forward translations by bilingual, native Arabic speakers as well as evaluation by an expert panel. The reconciled version was then administered to 20 patients as a pilot from which to create the final version, which was then used with 244 patients. Phase two for the ESAS-involved an ESAS-based validation of 244 adults aged 18 years and older who were diagnosed with advanced cancer; then, further validation was completed in conjunction with two other symptom survey tools, the EORTC-Pal 15 and the HADS. The ESAS-A items possessed good internal consistency with an average Cronbach's alpha of 0.84, ranging from 0.82 to 0.85. Moreover, the results of ESAS-A showed good agreement with those of EORTC QLQ- 15 PAL (r = 0.36 to 0.69) and HADS (r = 0.60 and 0.57) regarding anxiety and depression. We found the ESAS-A to be responsive to symptom change and a median time to completion of 3.73 min. The results of our study demonstrate that the ESAS-A is a reliable, valid, and feasible tool for the purposes of monitoring symptom change over the course of cancer treatment.

Stress, resilience, and moral distress among health care providers in oncology during the COVID-19 pandemic.

Background: The coronavirus pandemic has potential implications for stress levels and resilience among oncology healthcare professionals (HCPs). This study aims to assess perceived stress, resilience, and moral distress levels among oncology HCPs in Jordan during the pandemic and identify associated risk factors. Methods: An online cross-sectional survey was conducted among oncology HCPs in Jordan using three validated tools: Perceived Stress Scale (PSS), Connor-Davidson Resilience Scale (CD-RSIC), and Moral Distress Thermometer (MDT). Seven items were used to assess sources of stress. Results: A total of 965 participants enrolled with a 74% response rate. The participants' ages ranged from 20 to 74 (mean = 32.74, SD = 5.197), with 79.1% males, 45.1% were physicians, 32.6% were public hospital workers, 57.1% were married, and 56.6% had children below 18 years. Findings indicated moderate perceived stress (Mean = 15.87, SD = 5.861), low resilience (Mean = 29.18, SD = 5.197), and high moral distress (Mean = 4.72, SD = 2.564). Females, unmarried individuals, and younger age groups exhibited higher PSS (p = 0.009, p < 0.001, and P<0.001) and lower resilience (p = 0.024, p = 0.034, and p = 0.001). Not having children below 18 years correlated with higher perceived stress (P < 0.001). In linear regression analysis, age and gender emerged as significant predictors of both perceived stress and resilience. Female participants reported stress related to the risk of contracting COVID-19 (p = 0.001), transmitting it to others (p = 0.017), social isolation (P < 0.001), and having children at home due to school closures (p = 0.000). A cohort of 239 participants repeated the survey within a two-month interval, revealed a statistically significant decrease in the CD-RISC scores (p < 0.001). Conclusion: Oncology HCPs in Jordan experienced moderate stress, high moral distress, and poor resilience during the COVID-19 pandemic. These factors may negatively affect the quality of oncology care. Urgent measures are necessary to support HCPs in coping with unforeseen circumstances in the future.

Care Needs and Symptoms Burden of Breast Cancer Patients in Jordan: A Cross-Sectional Study.

Breast cancer is the most common malignancy in Jordan. Rigorous needs assessment for breast cancer patients can prioritize both cancer care and palliative care to propose the appropriate services effectively. We conducted a cross-sectional study of breast cancer patients in a cancer center in Jordan. We assessed symptom burden, comorbidities, and performance using the Edmonton Symptom Assessment System (ESAS), the Charlson Comorbidity Index (CCI), and the Australia-modified Karnofsky performance scale (AKPS). Descriptive analysis and regression models to predict the highest symptom burden were used. A total of 233 participants were enrolled: curative vs. palliative intent groups (147 (63%) vs. 86 (37%) patients), respectively. Tiredness was the most reported symptom in 189 patients (81%), while nausea was the least in 61 patients (26.2%). A relationship between the AKPS score and total ESAS was seen (correlation coefficient of -0.487; p < 0.0001). The prevalence of anxiety (p = 0.014), lack of appetite (p = 0.002), poor well-being (p < 0.001), and sleep disorder (p = 0.035) was higher in the palliative care intent group than in the curative one. We identified unmet needs in breast cancer patients. Both groups showed a prevalence of distressing symptoms suggesting that even those with non-palliative intent have high needs and should receive integrated palliative care.

Developing a global practice-based framework of person-centred care from primary data: a cross-national qualitative study with patients, caregivers and healthcare professionals.

INTRODUCTION: Person-centred care (PCC) is internationally recognised as a critical component of high-quality healthcare. However, PCC evolved in a few high-income countries and there are limited data exploring this concept across the vast majority of countries which are low- and middle-income. This study aimed to appraise and adapt a PCC model across three serious physical conditions in three middle-income countries and generate an evidence-based framework and recommendations for globally relevant PCC. METHODS: Cross-national, cross-sectional qualitative study. In depth, semistructured interviews conducted with: advanced cancer patients in Jordan (n=50), their caregivers (n=20) and healthcare professionals (HCPs) (n=20); chronic obstructive pulmonary disease patients in South Africa (n=22), their caregivers (n=19) and HCPs (n=22); heart failure patients in Thailand (n=14), their caregivers (n=10) and HCPs (n=12). Data were analysed using framework analysis. Santana et al's PCC model (2018) and Giusti et al's systematic review (2020) were used to construct an a priori coding frame for deductive analysis, with additional inductive coding for coding that did not fit the frame. RESULTS: The findings both reveal specific practical actions that contribute towards delivering PCC and highlight new cross-national domains of person-centredness: interdependency and collectivism; bringing care into the home and community; equity and non-discrimination; addressing health and illness within the context of limited resources; and workforce well-being. CONCLUSION: The data suggest that PCC requires particular structural features of the healthcare system to be in place, such as professional education in PCC values and partnerships with community-based workers. These structures may better enable PCC processes, including tailored information sharing and providing genuine opportunities for patients to do the things that matter to them, such as making informed care decisions and sustaining social relationships. PCC must also accommodate a collectivist perspective and support the well-being of the workforce.

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.

Should INCB Consumption Data Be Utilized to Guide Opioids Policy?

CONTEXT: The International Narcotics Control Board's (INCB) opioids consumption data are often cited in the literature and by policy makers to benchmark the adequacy of pain management among different countries. This practice may be inaccurate as INCB data does not account for variations in disease burden and use of other pain medications and only controls for population sizes differences among countries. OBJECTIVE: To demonstrate that INCB consumption data may not be an accurate/sensitive indicator for pain management adequacy due to significant inter-country variations in disease burden and in the use of pain medications that are not reported by INCB. METHODS: We compared opioid consumption data between 2012 and 2016 for Jordan and King Hussein Cancer Center vs five high-income countries (United States of America, United Kingdom, France, Sweden, and Japan) taking into consideration the cancer burden in those countries. In addition, we examined the significance of tramadol utilization in the setting of cancer pain management. RESULTS: Jordan's INCB-reported opioid consumption is ostensibly low at a median of 291 sDDD/million inhabitants/day. Compared to Jordan, the median consumption in the five HICs is 34 (range 4-172) times that of Jordan. However, when consumption is adjusted to cancer burden data, the gap is significantly reduced to a median of 2 (range 0.2-24) times that of Jordan and in the case of one institution's experience, the gap is eliminated. Furthermore, Jordan's tramadol's median consumption between 2012-2016 of 176 kg is equivalent to 127% of morphine consumption on an equianalgesic basis. CONCLUSION: INCB data should not be utilized to benchmark the adequacy of pain management among different countries without taking into consideration variations in disease burden and the use of tramadol and other pain drugs.