Review
Oncology
Elena Ruggiero, Irene Tizianel, Mario Caccese, Giuseppe Lombardi, Ardi Pambuku, Vittorina Zagonel, Carla Scaroni, Fabio Formaglio, Filippo Ceccato
Summary: Adrenocortical cancer (ACC) is a rare malignancy with a poor prognosis. The best management approach involves a multidisciplinary team and can improve survival. Even in advanced cases, multimodal treatments and skillful management can lead to significant improvements in survival. However, patients with advanced ACC often suffer from severe physical and psychological symptoms and experience a decline in quality of life. The early integration of supportive and palliative care can alleviate the burden on cancer patients, mediate aggressive treatments, and improve their quality of life.
Review
Health Care Sciences & Services
Christopher Mwase, Kennedy Nkhoma, Mathew J. Allsop
Summary: This review synthesized literature on digital health interventions for palliative care for people living with HIV in sub-Saharan Africa and assessed their effects on patient outcomes. The results suggest that digital health interventions can be effective in facilitating patient-provider communication and health professional decision-making as a part of palliative care for people living with HIV.
Article
Critical Care Medicine
Christopher E. Cox, Jessie Gu, Deepshikha Charan Ashana, Elias H. Pratt, Krista Haines, Jessica Ma, Maren K. Olsen, Alice Parish, David Casarett, Mashael S. Al-Hegelan, Colleen Naglee, Jason N. Katz, Yasmin Ali O'Keefe, Robert W. Harrison, Isaretta L. Riley, Santos Bermejo, Katelyn Dempsey, Kimberly S. Johnson, Sharron L. Docherty
Summary: This study aimed to describe trajectories of palliative care needs during ICU care and determine if changes in needs over 1 week were associated with similar changes in psychological distress symptoms at 3 months. The results showed that serious palliative care needs were common and persistent among families during ICU care, but improvement in needs did not alleviate psychological distress at 3 months.
CRITICAL CARE MEDICINE
(2023)
Review
Urology & Nephrology
Nicola Wearne, Bianca Davidson, Tsepo Motsohi, Mignon Mc Culloch, Rene Krause
Summary: The incidence of end-stage kidney disease is rising globally, but access to kidney replacement therapy is limited in South Africa due to resource constraints. Rationing of dialysis is deemed appropriate by the South African Constitutional Court, leading to patients being placed on a palliative care pathway. A multidisciplinary approach is needed to manage symptoms effectively and provide support for patients with ESKD.
KIDNEY INTERNATIONAL REPORTS
(2021)
Article
Medicine, General & Internal
Shang-Yih Chan, Yun-Ju Lai, Ming-Chung Ko, Yu-Yen Chen, Yi-Fan Tsai, Li-Fei Hsu, Po-Wen Ku, Li-Jung Chen, Pei-Hung Chuang, Chu-Chieh Chen, Yung-Feng Yen
Summary: Hospice care services are underutilized by people living with HIV, as they were less likely to receive these services compared to HIV-negative individuals. Future hospice care programs should focus on targeting HIV-positive individuals to increase optimal utilization of services during end-of-life treatment.
Review
Microbiology
Mohamed H. Ahmed, Fatima Ahmed, Abu-Bakr Abu-Median, Maria Panourgia, Henry Owles, Bertha Ochieng, Hassan Ahamed, Jane Wale, Benjamin Dietsch, Dushyant Mital
Summary: The increasing number of older people living with HIV (OPLWH) in the UK is a result of improved healthcare services and the effectiveness of combined antiretroviral therapy (cART). These OPLWH face similar health issues as the general aging population, including cardiovascular disease, infections, and cancer. They also require comprehensive medical and psychosocial care.
Article
Medicine, General & Internal
Anna Bolzani, Christina Ramsenthaler, Farina Hodiamont, Isabel Sophie Burner-Fritsch, Claudia Bausewein
Summary: Patient-reported outcome measures have been developed to understand the patient's perspective in palliative care. This study aims to develop and test the feasibility of implementing an electronic version of IPOS in specialized palliative home care. The study will utilize both qualitative and quantitative methods to explore barriers and facilitators of eIPOS implementation.
Article
Health Care Sciences & Services
Ramya Tadipatri, Amir Azadi, Madison Cowdrey, Samuel Florian Fongue, Paul Smith, Evangelia Razis, Maria Boccia, Yumna Ghouri, Paula Zozzaro-Smith, Ekokobe Fonkem
Summary: The survey among physicians in Sub-Saharan Africa revealed that about 48% of them felt comfortable in providing palliative care consultations. However, 52% believed that palliative care is only appropriate when there is irreversible deterioration, and 49% do not have access to liquid opioid agents. Cultural beliefs held by patients or families were identified as a barrier to adequate palliative care treatment.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2021)
Article
Pediatrics
Holger Hauch, Peter Kriwy, Andreas Hahn, Reinhard Dettmeyer, Klaus-Peter Zimmer, Bernd Neubauer, Sabine Brill, Vera Vaillant, Jan de Laffolie, Kristine Schaefer, Irina Tretiakowa, Michaela Hach, Ulf Sibelius, Daniel Berthold
Summary: Specialized palliative home care in Germany allows for children with life-limiting diseases to receive care at home. GI symptoms are common in both phases of care, with vomiting being more prevalent in the terminal support phase. Treatment was effective in reducing symptoms and improving the overall condition of the patients.
FRONTIERS IN PEDIATRICS
(2021)
Article
Hematology
Clement D. Okello, Nixon Niyonzima, Marta Ferraresso, Sylivestor Kadhumbula, Henry Ddungu, Katherine Tarlock, Joyce Balagadde-Kambugu, Abrahams Omoding, Louis Ngendahayo, Alfred Karagu, Julius Mwaiselage, John M. Harlan, Thomas S. Uldrick, Suzanne D. Turner, Jackson Orem
Summary: Haematological malignancies account for almost 10% of cancer diagnoses in sub-Saharan Africa, and more research is needed to understand their natural history and improve treatment outcomes. Various factors negatively impact the outcome of haematological malignancies in the region, highlighting the need for improved understanding and collaboration to facilitate prevention, early detection, diagnosis, and appropriate treatment.
LANCET HAEMATOLOGY
(2021)
Article
Health Care Sciences & Services
Jackelyn Y. Boyden, Douglas L. Hill, Russell T. Nye, Kira Bona, Emily E. Johnston, Pamela Hinds, Sarah Friebert, Tammy I. Kang, Ross Hays, Matt Hall, Joanne Wolfe, Chris Feudtner
Summary: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty. The results showed that financial difficulty had a stronger and larger association with parental distress compared to symptom scores alone.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Health Care Sciences & Services
David W. Kissane, Irene Bobevski, Jane Appleton, Natasha Michael, Tania King, Graham Moss, Derek Eng, Alison White, Danielle Carboon, Rachel Eade, Luka Keighley
Summary: Insufficient attention is given to psycho-existential symptoms in palliative care. Implementing a psycho-existential symptom assessment scale can help identify and treat these symptoms. After implementing the assessment scale, some patients showed improvement in their symptoms, but there is room for further improvement.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2023)
Article
Health Policy & Services
Racheal Dipio, Wilson Acuda, Eve Namisango, Mary Gorrethy Nalubega-Mbowa
Summary: Caring for family caregivers of palliative care patients in Uganda revealed a high prevalence of depressive symptoms, which showed significant association with education status and religious affiliation. Efforts to assess and manage depressive symptoms should be included in palliative care for this population.
PALLIATIVE & SUPPORTIVE CARE
(2022)
Editorial Material
Oncology
M. Yahya Jan, Toby C. Campbell
Summary: Over the past decade, palliative care has expanded its role in the clinical management of individuals with serious illnesses. To further enhance its presence in oncology and foster collaboration with other specialties, initiatives to advance research and medical education are needed.
Review
Nutrition & Dietetics
Anna Zasowska-Nowak, Piotr Jan Nowak, Aleksandra Cialkowska-Rysz
Summary: Carotenoids, as a group of natural compounds, may have potential benefits in relieving cancer-related symptoms, such as neuropathic pain and cancer-related cachexia, in patients receiving palliative care.
Article
Health Care Sciences & Services
William E. Rosa, Amisha parekh de Campos, Nauzley C. Abedini, Tamryn F. Gray, Huda Abu-Saad Huijer, Afsan Bhadelia, Juli McGowan Boit, Samuel Byiringiro, Nigel Crisp, Constance Dahlin, Patricia M. Davidson, Sheila Davis, Liliana De Lima, Paul E. Farmer, Betty R. Ferrell, Vedaste Hategekimana, Viola Karanja, Felicia Marie Knaul, Julius D. N. Kpoeh, Joseph Lusaka, Samuel T. Matula, Cory McMahon, Salimah H. Meghani, Patricia J. Moreland, Christian Ntizimira, Lukas Radbruch, M. R. Rajagopal, Julia Downing
Summary: Access to palliative care is crucial for achieving the highest standard of health. Nurses play a key role in expanding palliative care access and their contributions should be recognized and supported.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Medicine, General & Internal
Javiera Leniz, Lesley A. Henson, Jean Potter, Wei Gao, Tom Newsom-Davis, Zia Ul-Haq, Amanda Lucas, Irene J. Higginson, Katherine E. Sleeman
Summary: The study found that increased contacts with community nurses were associated with fewer hospital admissions in the last 30 days and fewer emergency department visits in the last 2 weeks for people with end-of-life cancer. However, increased contacts with general practitioners were associated with a higher risk of more hospital admissions in the last 90 days and more emergency department visits in the last 2 weeks. Therefore, expanding community nursing could potentially reduce acute hospital use at the end of life.
Article
Health Care Sciences & Services
Irene J. Higginson, Mevhibe B. Hocaoglu, Lorna K. Fraser, Matthew Maddocks, Katherine E. Sleeman, Adejoke O. Oluyase, Rachel L. Chambers, Nancy Preston, Lesley Dunleavy, Andy Bradshaw, Sabrina Bajwah, Fliss E. M. Murtagh, Catherine Walshe
Summary: This study provides important evidence on symptom control and palliative care for severe COVID-19 cases. Symptoms of COVID-19 improved during palliative care, with breathlessness, agitation, and multimorbidity being associated with shorter survival.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Respiratory System
Deokhee Yi, Charles C. Reilly, Gao Wei, Irene J. Higginson
Summary: This study found that breathlessness services were cost-effective compared to usual care, resulting in cost savings and improved quality of life. Additionally, tailoring service attributes to individual preferences increased the uptake of these services.
Review
Oncology
Jaques van Heerden, Irumba Lisa Christine, Julia Downing, Alan Davidson, Laila Hessissen, Judy Schoeman, Elena J. Ladas, Hafeez Abdelhafeez, Shauna Georgia Odongo Arao, Atalay Mulu Fentie, Sherif Kamal, Jeannette Parkes, Thurandrie Naiker, Adri Ludick, Joyce Balagadde-Kambugu, Jennifer Geel
Summary: Education of the pediatric oncology workforce plays a crucial role in improving childhood cancer management, involving all stakeholders. However, in Africa, childhood cancer has not been prioritized in cancer control plans or education and advocacy efforts. Formal training programs for medical professionals in pediatric oncology are limited, and exposure to pediatric oncology in pharmacy and nutritional services is lacking. While nonacademic stakeholders are creating opportunities for training, formal programs are still needed.
PEDIATRIC HEMATOLOGY AND ONCOLOGY
(2023)
Article
Health Care Sciences & Services
Tushti Bhardwaj, Rachel L. Chambers, Harry Watson, Irene J. Srividya, Irene J. Higginson, Mevhibe B. Hocaoglu
Summary: This study aimed to translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi. Through a standardized methodology, the Hindi IPOS was developed and found to have face and content validity for clinical practice and research. The availability of the Hindi IPOS has implications beyond Indian palliative care settings, as it provides millions of Hindi speakers with a tool to communicate their palliative care needs in their mother tongue.
PALLIATIVE MEDICINE
(2023)
Article
Health Care Sciences & Services
Lucy E. Selman, Eileen Sutton, Renata Medeiros Mirra, Tracey Stone, Emma Gilbert, Yansie Rolston, Karl Murray, Mirella Longo, Kathy Seddon, Alison Penny, Catriona R. Mayland, Donna Wakefield, Anthony Byrne, Emily Harrop
Summary: Voluntary and community sector bereavement services are crucial for bereavement support in the UK. However, many needs were not met, particularly among minority ethnic, sexual minority, deprived, and male groups before and during the COVID-19 pandemic. The pandemic had a disproportionate impact on minority ethnic communities, leading to disrupted care and mourning practices. While online provision improved access, it also excluded certain individuals. Positive interventions, such as collecting demographic data and improving outreach and language accessibility, can help address these inequities in accessing bereavement support.
PALLIATIVE MEDICINE
(2023)
Letter
Respiratory System
Natasha Lovell, Simon N. Etkind, Joanna M. Davies, Wendy Prentice, Irene J. Higginson, Katherine E. Sleeman
EUROPEAN RESPIRATORY JOURNAL
(2023)
Article
Health Care Sciences & Services
Javiera Leniz, Joanna M. Davies, Anna E. Bone, Mevhibe Hocaoglu, Julia Verne, Stephen Barclay, Fliss E. M. Murtagh, Lorna K. Fraser, Irene J. Higginson, Katherine E. Sleeman
Summary: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic, with evidence of socioeconomic inequality. The increase in home deaths was lowest for people living in the most deprived areas, showing a deprivation gradient. Further research is needed to understand the reasons for this change and if the inequality has been sustained. Overall rating: 7 points.
PALLIATIVE MEDICINE
(2023)
Review
Respiratory System
Claire M. Nolan, Lisa Jane Brighton, Yihan Mo, Joanne Bayly, Irene J. Higginson, William D. -C. Man, Matthew Maddocks
Summary: This systematic review examined the effect of meditative movement on breathlessness, quality of life, exercise capacity, functional performance, and psychological symptoms in advanced disease. The results showed that meditative movement did not improve breathlessness, quality of life, or exercise capacity in people with advanced COPD or cancer.
EUROPEAN RESPIRATORY REVIEW
(2023)
Article
Respiratory System
Charles C. Reilly, Matthew Maddocks, Trudie Chalder, Katherine Bristowe, Irene J. Higginson
Summary: SELF-BREATHE is a digital breathlessness intervention that aims to improve the lives of people with chronic breathlessness. This study found that SELF-BREATHE was feasible to deliver and acceptable to patients, with users reporting improved breathlessness during daily life.
Article
Public, Environmental & Occupational Health
Emily Harrop, Renata Medeiros Mirra, Silvia Goss, Mirella Longo, Anthony Byrne, Damian J. J. Farnell, Kathy Seddon, Alison Penny, Linda Machin, Stephanie Sivell, Lucy E. Selman
Summary: This longitudinal study investigated the prevalence of Prolonged Grief Disorder (PGD) in UK individuals bereaved during the COVID-19 pandemic. The study found higher than expected levels of PGD, with social isolation, lack of social support, and support from healthcare professionals playing significant roles in the development of prolonged grief symptoms.
FRONTIERS IN PUBLIC HEALTH
(2023)
Article
Health Care Sciences & Services
Lucy E. Selman, Nicholas Turner, Lesel Dawson, Charlotte Chamberlain, Aisling Mustan, Alison Rivett, Fiona Fox
Summary: The Good Grief Festival successfully attracted a large online audience and had a positive impact on engagement, confidence, and community-building. The evaluation findings suggest that festivals of this nature can play a central role in increasing public awareness of death and grief within a public health approach.
PALLIATIVE CARE & SOCIAL PRACTICE
(2023)
Article
Social Work
Emily Harrop, Lucy E. Selman
Summary: This review considers the research evidence on experiences of bereaved individuals during the Covid-19 pandemic. The findings highlight the exceptional challenges posed by pandemic bereavement, including disruptions to end-of-life care, mourning practices, social networks, and coping mechanisms. There is a considerable need for emotional, therapeutic, and informal support among bereaved individuals, yet significant difficulties in accessing such support exist.
BEREAVEMENT-JOURNAL OF GRIEF AND RESPONSES TO DEATH
(2022)
Article
Health Care Sciences & Services
Hannah May Scott, Lucy Coombes, Debbie Braybrook, Anna Roach, Daney Hardardottir, Katherine Bristowe, Clare Ellis-Smith, Irene Higginson, Wei Gao, Myra Bluebond-Langner, Bobbie Farsides, Fliss E. M. Murtagh, Lorna K. Fraser, Richard Harding
Summary: The COVID-19 pandemic and lockdowns have had a negative impact on children and young people with life-limiting or life-threatening conditions and their families, resulting in loss of social support, disruption of vital services, and increased psychological distress.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)