Annals of palliative medicine最新文献

Background: Radiotherapy is a frequently utilized palliative treatment for cancer patients. Electronic Patient-Reported Outcome Measures (ePROMs) offer a method for patients to communicate their symptoms and concerns to healthcare providers (HCPs) remotely. While ePROMs have demonstrated significant benefits for oncology patient care, their integration into routine clinical practice of palliative radiotherapy (PRT) poses challenges. The current study aimed to evaluate the implementation of an ePROM-intervention after PRT.

Methods: We conducted a two-phase study to evaluate the implementation of a self-developed ePROM intervention, known as the ePRomT diary, for symptom monitoring post-PRT. This diary offered automated self-management advice for mild symptoms and also guided patients to contact an HCP for severe symptoms. We assessed various implementation aspects using the RE-AIM framework and collected data through surveys, interviews, electronic health records, and field notes. Quantitative data analysis employed descriptive statistics, while qualitative data underwent thematic analysis using NVivo. Recruitment periods for both phases spanned 10 weeks.

Results: In Phase I, 37 out of 87 eligible patients (43%) participated, a number that rose to 40 out of 49 eligible patients (82%) in Phase II. Among participating patients, 93% in Phase I and 98% in Phase II reported the ePRomT diary as a valuable addition to their care. Additionally, 75% and 84% expressed willingness to reuse it, while 70% and 80% would recommend it to others in Phases I and II, respectively. In Phase I, 17 out of 39 patients (44%) completed at least one ePROM assessment, increasing to 26 out of 40 patients (65%) in Phase II. While patients found the self-management advice generally correct and relevant, they noted its somewhat generic nature. Moreover, while the advice to contact an HCP was deemed appropriate, adherence to it varied. HCPs expressed satisfaction with the intervention, deeming it valuable in patient care, and believed that integrating it into routine clinical practice would enhance patient acceptability with minimal workflow disruptions.

Conclusions: Despite certain limitations, including participant bias, our study offers valuable insights into the implementation and potential implications of an ePROM intervention for symptom follow-up post-PRT, framed within the RE-AIM framework. ePROM interventions like the ePRomT diary show promise and are well-received by both patients and HCPs. However, optimizing such interventions to better align with patient needs and seamlessly integrating them into clinical workflows within the context of PRT warrants further investigation.

Background: Childhood cancer persists as a prominent public health concern in low- and middle-income countries (LMICs), with only a 20% survival rate. In Bangladesh, 67% of healthcare expenses are out of pocket. Since 2012, World Child Cancer-UK (WCC-UK) has collaborated with Bangabandhu Sheikh Mujib Medical University (BSMMU) to address this issue. This evaluation aimed to assess the project's purpose and impact, delivering insights to donors regarding their contributions, best practices, lessons learned, potential challenges encountered, and recommendations for future project development or refinement.

Methods: This study employed a qualitative method to evaluate the WCC-UK project objectives from May to June 2017. It involved seven document reviews and nine key informant interviews (KIIs) with project leadership, collaborating partners at the Hub and Satellites, management staff, and Twinning Partners. Besides, two in-depth interviews (IDIs) were carried out with certain beneficiaries, particularly parents of children with cancer. Thematic data analysis was performed to emanate the findings.

Results: Despite facing challenges such as an unclear management structure, ambiguous patient eligibility criteria, personnel issues, and communication gaps, the project made strides in several areas. BSMMU provided essential space and leadership, while Satellite Centers supported the project with continuing medical education (CME) and data entry. The project offered subsidies to poor patients and improved cancer awareness among healthcare providers and service seekers. Despite some parents receiving health and nutrition education during their hospital stays, developing a long-lasting system to educate them about long-term cancer care for their children was found to be formidable. The analysis also highlighted staffing shortages, a hierarchical gap between physicians and nurses, and a predominantly male leadership structure.

Conclusions: While the project has made progress toward its goals, there are critical areas that require attention to fully realize its objectives. Specifically, it is recommended that the project clarify its management structure, establish clear patient eligibility criteria, address staffing and communication issues, and work towards a more inclusive leadership. These improvements are essential for the project's long-term success and sustainability.

Planning for future medical treatment, and care, referred to as advance care planning (ACP), has evolved to a focus on conversations that explore values and preferences in a broad sense. Given diverse practices internationally, we examined how international experts would define ACP themselves and whether this differs by medical profession. In an explorative study embedded in a Delphi study on ACP in dementia, experts in ACP in persons with dementia and other diseases reported at baseline how they would define ACP "in one sentence, off the top of your head". We analyzed the text of the reported definitions with content analysis, created codes to identify small definition elements, then merged them into categories. We assessed phrasing from a patient, healthcare professional, or neutral perspective. Almost half (45%) of 87 experts from 30 countries phrased ACP from a patient perspective (29% neutral, 26% professional). Codes (n=131) were merged into 19 categories. Five categories appeared in more than half of the definitions: 'Choosing between options', 'Care and treatment', 'Planning for the future', 'Individual person' and 'Having conversations'. Other categories, including 'End of life' and 'Documentation' were mentioned by a minority of experts. The categories and perspectives did not appreciably differ between physicians and other professionals. In conclusion, international experts from 30 countries typically defined ACP as person-centered conversations to choose future care and treatment, without focusing on end of life or documentation. Future research should evaluate the extent to which such conceptualization of ACP is present within clinical programs and practice recommendations and our work may serve as a starting point to monitor changes over time. Registration: World Health Organization Clinical Trial Registry Platform (NL9720).

As the global older adult population continues to grow, challenges related to managing multiple chronic conditions (MCCs) or multimorbidity underscore the growing need for palliative care. Palliative care preferences and needs vary significantly based on context, location, and culture. As a result, there is a need for more clarity on what constitutes palliative care in diverse settings. Our objective was to present an international perspective on palliative care in India, a culturally diverse and large ancient Eastern middle-income country. In this narrative review article, we considered three questions when re-designing palliative care for older adults aging-in-place in India: (I) what are the needs for palliative care for persons and their families? (II) Which palliative care domains are essential in assessing improvements in the quality of life (QoL)? (III) What patient reported measures are essential considerations for palliative care? To address these questions, we provide recommendations based on the following key domains: social, behavioral, psychological, cultural, spiritual, medical, bereavement, legal, and economic. Using an established and widely reported conceptual framework on aging and health disparities, we provide how these domains map across multiple levels of influence, such as individual or family members, community, institutions, and health systems for achieving the desired QoL. For greater adoption, reach, and accessibility across diverse India, we conclude palliative care must be carefully and systematically re-designed to be culturally appropriate and community-focused, incorporating traditions, individual preferences, language(s), supports and services from educational and health institutions, community organizations and the government. In addition, national government insurance schemes such as the Ayushman Bharat Yojna can include explicit provisions for palliative care so that it is affordable to all, regardless of ability to pay. In summary, our considerations for incorporating palliative care domains to care of whole person and their families, and provision of supports of services from an array of stakeholders broadly apply to culturally diverse older adults aging in place in India and around the globe who prefer to age and die in place.

Up to one in five early breast cancer patients develop chronic upper limb lymphedema after breast cancer treatments. This treatment complication is irreversible and can significantly impact the quality of life of breast cancer survivors. The model of prospective surveillance and early intervention has emerged as a potential strategy to prevent the development of this debilitating treatment-related complication. However, the widespread implementation of such programs worldwide is challenging. The aim of this review is to identify barriers of implementation, including selecting suitable patients to be enrolled, determining the optimal method for lymphedema screening, and choosing the most effective treatment to prevent progression when early or subclinical breast cancer-related arm lymphedema (BCRAL) is detected. Future research should develop accurate predictive models for the development of upper limb lymphedema using population based datasets with artificial intelligence and investigate the comparative efficacy of different screening methods and treatment options for early intervention for BCRAL. The medical community should also regularly review whether new treatments such as immunotherapy, targeted therapies and new surgical or radiation techniques could contribute to the development of arm lymphedema. By overcoming these barriers, we can improve the feasibility of implementing early prospective surveillance programs in clinical practice, ultimately improving the care and outcomes for breast cancer survivors at risk of treatment-related upper limb lymphedema.

Hospice use among Hispanic Medicare beneficiaries has declined in the last few years, and Hispanic caregivers have reported insufficient support around the emotional and spiritual aspects of care. Understanding the home hospice experience of Puerto Rican (PR) caregivers can yield insight into ways to improve hospice participation and quality of care for the Hispanic population. This exploratory study utilizes qualitative methods to identify PR caregivers' experience in the setting of home hospice care. Data from interviews with eight (n=8) bereaved PR caregivers of patients who received home hospice care were qualitatively analyzed. Participants were mostly well-educated (n=6/8) female caregivers caring for their parent (n=7/8) with mean age of 57 [standard deviation (SD) =13] years. Emerging domains from the study included (I) symptom management; (II) cultural and religious values; and (III) interaction with hospice providers. Caregivers found managing patients' loss of appetite, pain, anxiety, and confusion to be challenging. They identified family-centered values and religious support as culturally important, which manifested as the need for frequent communication from hospice providers and increased support and education at the end-of-life. Culturally tailored interventions that focus on managing symptoms, tailoring care to support family-centered values, integrating religious officials representative of the patient's beliefs into the hospice team, and communicating effectively with providers may reduce the burden experienced by PR caregivers in home hospice and improve outcomes for patients and caregivers. Additional research will aid in the development of evidence-based intervention and policies urging healthcare providers to offer culturally appropriate hospice care and resources to this population.

Palliative surgery is defined as an operation or procedure performed with the primary intention of relieving symptoms or improving quality of life. Gastrostomy tubes are often employed with palliative intent but, like many palliative interventions, there is insufficient data to facilitate surgical decision-making. This can be challenging for healthcare professionals as caring for palliative patients often encompasses end of life care, severe life-altering symptoms, and poor prognosis. Thus, we have gathered available data for the appropriate use of gastrostomy tube in palliative surgery and propose our mini-review as a primer to aid in medical and surgical decision-making. We first provide the background for palliative surgery and the definition, brief history and techniques pertinent to palliative gastrostomy tube (PGT). Then we review the data relevant to two common indications-head/neck cancer and malignant bowel obstruction-for PGT. As our deliverable, we present an effective paradigm for delivering the data to patients and families utilizing known palliative communication and decision-making frameworks such as the Palliative Triangle, Best Case/Worst Case and Defining Value. Moreover, we highlight the necessity of conducting more palliative care research that involves palliative outcome measures in addition to traditional metrics such as overall survival. We end our discussion by emphasizing the importance of multidisciplinary team, individualized decision-making, and relationship-based care for palliative patients.