Palliative Care of Multiple Myeloma Patients - a Nigerian Retrospective Outcome

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5678-5678
Author(s):  
Ogbonna Collins Nwabuko ◽  
Martins A. Nnoli ◽  
Elizabeth Igbigbi

Abstract Background: According to World Health Organization, Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain, and other problems, physical, psychosocial and spiritual. Multiple Myeloma (MM) is one of the hematological malignancies that requires palliative care. This is because of the diagnostic dilemma it poses in resource-limited settings, its life-threatening nature and the suffering it inflicts on people living with it, especially in sub-Saharan Africa. Late presentation coupled with the complications of the disease worsen the prognosis of MM in this region, hence the need for palliative intervention. This study gives insight to the complications presented by people living with MM in the Niger-delta region of Nigeria and the outcome of various palliative interventions recruited to improve their quality of life. Methodology: A-10-year multi-centered retrospective analysis of 26 patients diagnosed and managed in three major centers from January, 2003 to December, 2013. Information on the clinical, laboratory, radiological data as well as palliative treatment (supportive and definitive) was obtained at presentation and at 3 monthly intervals until patients were lost to follow-up. Result: The median age of patients was 60.6 years with M:F ratio of 2.3:1. The mean duration before presentation was 11.8 months (11-48 months) with 61.5% (16), 30.8% (8),and 7.7% (2) presenting in Durie-salmon (DS) stage III,II and I diseases respectively. About 65.4% of the patients had a Performance status (PS) of III-IV (based on Eastern Co-operative Oncology Group (ECOG) classification)) while 34.6% had PS of I-II. The complications presented at diagnosis were anaemia (61.5%), pathological fracture (42.0%), nephropathy (23.1%), and hemiplegia (35%). The mean Hemoglobin concentration, Erythrocyte sedimentation rate (ESR), Bone marrow plasma cells (BMPC), serum creatinine, serum calcium and serum albumin were 7.8±5.1g/dl, 126.9±59.0 mm/hour, 38.5±33.5%, 256±192.5µmol/L, 2.51±0.8mmol/L and 36±9.3g/dl respectively. 25% (1/4) and 75% (3/4) were IgA- and IgG-types myeloma respectively. 70% (14/20) had osteopenic bone lesions. All (100%) the patients received analgesics (mainly NSAID regimens-non could access oral morphine) and hematinics (Iron supplements) as supportive interventions while 56.7%, 50.0%, and 19% had surgery, blood transfusion and renal hemodialysis respectively. Radiotherapy, Bisphosphonates, Erythropoietin and G-CSF (Neupogen) were received by 3.8%, 38%, 38%, and 11.4% of the patients respectively. 57.6% were on melphalan-prednisone (MP) double regimen while 19% and 8% were on MP-Thalidomide and MP-Bortezomib triple regimens respectively.8% were on Cyclophosphamide plus Prednisolone (CP). 3.8% at DS stage III-B disease had an Autologous Stem Cell Transplantation (ASCT). The mean survival interval was 13.12 months (95% CI, 6.65-19.58). The patients on MPV had longest duration of 72 months while the patients on CP had least duration of 2 months. Conclusion: The PC of people living with advanced stage MM in Niger-Delta Nigeria is grossly inadequate. This could account significantly for the poor prognostic outcome of MM in the region. There is need to scale up palliative care of people living with MM via proper diagnosis, good supportive and definitive interventions. Oral morphine should be made availabe to alleviate the pains and sufferings due to bone lesions in this condition. Disclosures No relevant conflicts of interest to declare.

2014 ◽  
Vol 9 (2) ◽  
pp. 3-10
Author(s):  
B D Paudel ◽  
G Dangal ◽  
D Munday

Patients diagnosed with a life threatening condition like cancer suffer physically, socially and mentally. Their quality of life can be improved by effective communication and good symptom control even when the disease is incurable. Pain is the most common symptom and can be controlled by optimal use of analgesics especially oral morphine if severe. Psychosocial issues like depression and anxiety can be minimized by counseling and use of medicines. Death is more painful than birth but can be minimized by understanding the reality and by honest sharing which will help to minimize unnecessary sufferings. Palliative care is the care of these patients and their family members to make their life comfortable. Modern palliative care has developed around the world since the 1960s and in Nepal, since the beginning of 21st century. Much remains to be done before palliative care can be an integrated part of health care in Nepal. In this context gynaecologist having knowledge and skills in palliative care, have an important role in improving the quality of life of patients with life threatening condition and their family members.DOI: http://dx.doi.org/10.3126/njog.v9i2.11724


2021 ◽  
Vol 27 (10) ◽  
pp. 524-530
Author(s):  
Haley Walker ◽  
Mary Chapman Miller ◽  
Brittany Cowfer ◽  
Terrah Akard ◽  
Mary Jo Gilmer

Background: Children with advanced cancer and their primary caregivers may experience severe stress and anxiety in coping with their life-threatening condition. As a way to help reduce these stressors and increase overall quality of life, research suggests that animal-assisted interactions may be beneficial when integrated into palliative care. Aims: This pilot study aims to provide evidence for the feasibility and efficacy of a randomised clinical trial using animal-assisted interactions to help improve the quality of life for children with an advanced life-threatening condition and their primary caregivers. This protocol paper outlines the basis of the research, goals, experimental design and methodology.


Pained ◽  
2020 ◽  
pp. 203-206
Author(s):  
Michael D. Stein ◽  
Sandro Galea

This chapter assesses palliative care. Palliative care focuses on improving the quality of life for people with life-threatening illnesses by involving a team of nurses, doctors, social workers, and clergy in a care plan. Hospice care—administered in dedicated units and in services delivered at home—has been slowly expanding over the past two decades, but the increasing percentage of patients who use hospice for less than 7 days suggests that the full benefits of end-of-life palliative care are not being realized. Meanwhile, the use of unwanted, aggressive end-of-life care, often inconsistent with patient preferences, remains pervasive. For palliative care to be effective, it must be supported by government policies and insurer incentives; it must also be owned by communities, which must continue to ask for help in designing and paying for high-quality palliative care for patients and their caregiving families.


Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 4735-4735
Author(s):  
Catherine D Williams ◽  
Irina Proskorovsky ◽  
Philip Lewis ◽  
K. Jack Ishak ◽  
Krista A Payne ◽  
...  

Abstract Abstract 4735 Introduction: Symptoms of multiple myeloma (MM) and the adverse events (AEs) associated with MM treatment can be debilitating on many levels. A better understanding of the extent to which patients are affected and how this in turn impacts global health-related quality of life (HRQOL) can improve management of patients. Methods: A survey in 11 centers in the United Kingdom and Germany gathered, among other items, data on HRQOL, measured by the European Organization for Research and Treatment of Cancer's (EORTC) generic cancer and MM modules (QLQ-C30 and QLQ-MY20 scales), from a cross-section of patients with multiple myeloma at various phases of the disease. The QLQ-C30 is comprised of a global QOL domain, 5 functional and 3 symptom domains, and 6 AE items; the QLQ-MY20 includes scales for disease symptoms, treatment side-effects, future perspective and body image. This analysis aimed to explore the association between individual QOL scales (from QLQ-C30 and QLQ-MY20) and global QOL. Values for each scale range from 0 to 100; higher values indicate better HRQOL for the global, functional, future perspective and body image scales, and worse HRQOL for the AE items, symptom domains, disease symptoms and side-effects scales. Scoring of the QLQ-C30 and MY-20 scales was described previously by Fayers et al. [i] and Cocks et al. [ii] respectively. The distribution and correlations (Spearman) between the various scales was explored. Moreover, a multiple linear regression analysis was carried out to assess the association between individual scales and global QOL (from QLQ-C30) with the aim to identify those that independently impact global QOL. Each scale was first considered alone as a predictor of global QOL; those with a statistically significant association at a p-value ≤ 0.10 were included in a multiple regression model. This was then trimmed to exclude scales that became non-significant (p-value > 0.10). Results: The survey included 154 patients: 63.0% were male and the mean age was 66.4 (SD: 10.0). Mean time since diagnosis was 3.7 years (SD: 3.7), 51.9% were currently on treatment, and 42.9% had at least one prior line of MM therapy. The mean global QOL score was 60.1 (SD: 25.5), with the middle two quartiles of patients scoring between 41.7 and 83.3. Cognitive and emotional functioning scores had means near or above 80, suggesting that these aspects of HRQOL were less affected than role (62.9 (IQR: 33.3–100)), social (63.9(IQR: 33.3–100)) and physical functioning (68.7(IQR:53.3-93.3)). While body image scores were generally high (77.9 (IQR:66.7-100)), future perspective appeared to be relatively more affected (59.9 (33.3-77.8)). Patients’ HRQOL is most affected by pain and fatigue (based on symptom and AE scales of the QLQ-C30), with means above 30, followed by insomnia and dyspnoea with means above 20, while diarrhea and nausea/vomiting scales had the lowest mean scores (below 10). The Disease Symptom (23.3 (IQR:0-38.9)) and Side Effect scale scores (19.5 (IQR:7.4-29.6)) from the QLQ-MY20 were consistent with the AE and symptom scales from the QLQ-C30. All of the domains except diarrhea and nausea/vomiting individually showed at least moderate correlations with global QOL (Spearman correlations above 0.25 in absolute value), but also exhibited strong correlations between themselves. The final multiple regression model retained physical and social functioning, fatigue, disease symptoms (QLQ-MY20) and future perspective scales (QLQ-MY20), all of which had relatively similar strength of association with global QOL. Conclusion: This study demonstrates that the impact of MM and treatment AEs can be seen on various dimensions of patients’ HRQOL, particularly reduced physical and social functioning, future perspective and various disease symptoms such as bone pain (as captured by the disease symptoms scale of the QLQ-MY20) and fatigue. Fayers P, Aaronson N, Bjordal K, Groenvold M, Curran D, Bottomley A: The EORTC QLQ-C30 Scoring Manual. 3 Edition EORTC Quality of Life Group, Brussels 2001. [ii]Cocks K, Cohen D, Wisloff F, et al. An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-MY20) in assessing the quality of life of patients with multiple myeloma. Eur J Cancer 2007;43:1670-1678. Disclosures: Williams: Celgene: Honoraria; Jansen Cilag: Consultancy, Honoraria. Off Label Use: Some of the patients in the study received Thalidomide for the treatment of relapsed or refractory multiple myeloma. Proskorovsky:United BioSource Corporation: Consultancy, Research Funding. Lewis:Celgene International SARL: Employment. Ishak:United BioSource Corporation: Consultancy, Research Funding. Payne:United BioSource Corporation: Consultancy, Research Funding. Lordan:United BioSource Corporation: Consultancy, Research Funding. Davies:Celgene: Honoraria, Speakers Bureau; Ortho Biotech: Honoraria, Speakers Bureau. Peters:Celgene: Consultancy.


2016 ◽  
Vol 22 (2) ◽  
pp. 114-120 ◽  
Author(s):  
Jennifer L. Ashley ◽  
Tracy K. Fasolino

Hospice and palliative care aim to improve the quality of life for patients and families impacted by chronic, serious, and life-threatening illnesses. Patients and families benefit from earlier integration of palliative care and seamless transitions to hospice care. Nurses are an integral part of the care team, and their understanding of these services is critical. However, many nurses do not receive formal education in hospice and palliative care. This leads to lack of skills that nurses need to provide and discuss hospice and palliative care across care settings. Nurses in an acute care setting of a large health system were invited to participate in a survey, Attitudes Towards Care at the End-of-Life. The results of this survey revealed that nurses believe that patients and families need to be communicated with honestly regarding their disease, but nurses lack the knowledge of how to facilitate these discussions. Another key finding is that nurses feel less confident with non-pharmacologic interventions to relieve patients’ suffering. Education is urgently needed in these areas.


2012 ◽  
Vol 2012 ◽  
pp. 1-4 ◽  
Author(s):  
H. Safizadeh ◽  
S. Shamsi-Meymandy ◽  
A. Naeimi

Acne is a chronic inflammatory disease of pilosebaceous units. Although the acne isnot a life threatening disease, studies have revealed that it has significant effect on self-image and quality of life. The purpose of this paper was to investigate the health-related quality of life in patients with acne in an Iranian context. Dermatology Life Quality Index (DLQI) and Cardiff Acne Disability Index (CADI) were used for measuring quality of life, and severity of acne was measured by Global Acne Grading System (GAGS). The mean (±SD) of DLQI and CADI scores was 6.42 (±4.77) and 5.97 (±2.97), respectively. Acne influenced the quality of life in 51.8% of patients from moderate to very much, and the quality of life was affected by the severity of acne (P< 0.01). Since acne has significant effects on patient’s quality of life, the management of patients with acne requires more attention to different aspects of quality of life.


Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 1043
Author(s):  
Silvia Ortiz-Campoy ◽  
Cristina Lirio-Romero ◽  
Helena Romay-Barrero ◽  
David Martín-Caro Álvarez ◽  
Purificación López-Muñoz ◽  
...  

Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools used to control symptoms is physiotherapy; however, its application in the child population has not been thoroughly studied. The main objective of this study was to gather, analyze, and critically evaluate the available scientific evidence on physiotherapy in children who require palliative care through a systematic review of the studies published in the last 10 years in the following databases: PubMed, Cochrane Library, PEDro, CINAHL, and Scopus. Of a total of 622 studies, the inclusion criteria were only met by seven articles, which were focused on the relationship between physiotherapy and PPC. This study analyzed: (1) the main pathologies treated, with a predominance of cerebral palsy and cancer; (2) the interventions applied, such as respiratory physiotherapy, neurological physiotherapy, therapeutic massage, and virtual reality; (3) the effects achieved in the child and his/her family, highlighting the control of symptoms and the improvement of the quality of life; and (4) the knowledge of the physiotherapists on PPC, observing that most of the professionals had not received training in this scope. The findings of this review indicate a lack of an adequate evidence foundation for physiotherapy in PPC.


Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 1031
Author(s):  
Wendy Cristhyna Gómez García ◽  
Silvia Rivas ◽  
Gabriela Paz ◽  
Marisol Bustamante ◽  
Gerardo Castro ◽  
...  

Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.


Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 3921-3921
Author(s):  
Bastien Dutouquet ◽  
Xavier Leleu ◽  
Antoine Moraux ◽  
Eileen Boyle ◽  
Jordan Gauthier ◽  
...  

Abstract Abstract 3921 Background. Osteolytic disease is a major complication of multiple myeloma (MM) that may lead to devastating skeletal-related events (SREs). 70% of patients have osteolytic lesions at diagnosis, and up to 90% develop lytic lesions during the course of their disease. Furthermore, almost 15% of patients present with diffuse osteopenia at diagnosis. Various imaging techniques have been performed for the diagnosis and follow-up of bone disease in MM, however, conventional radiography (CR) remains the gold standard. CR has several limitations. One is that CR reveals lytic disease when more than 30% of the trabecular bone has been lost. Thus, some patients may have a suboptimal assessment of generalized osteopenia. Another limitation is that CR cannot be used for the assessment of response to therapy because the lytic bone lesions seldom show evidence of healing. On the other hand new vertebral fractures do not always indicate disease progression and may occur due to ongoing bone loss or reduction of tumor mass that supports the bony cortex. Other limitations include lack of accurate visualization of some areas, observer dependency, lengthy period on the examination table, and poor tolerance by patients with severe pain and extended lytic disease. The EOS System is a new 2D and 3D imaging system for musculo-skeletal physiology and pathology assessment with low radiation dose and standing position. We hypothesized that EOS would not be inferior to CR in terms of routine imaging and diagnosis of bone lytic lesions of patients with MM, but would improve on the quality of life during the procedure of the imaging for the frail patients with MM. Methods and Materials. Fifty six consecutive patients with symptomatic MM (at diagnostic and at first relapse) were included in this prospective study. Each patient provided informed consent. All patients underwent an EOS® examination (frontal and lateral views from skull to knees) and radiographs (axial skeleton: skull, spine, pelvis, femurs, humeri, ribs, as per International Myeloma Working Group guidelines) the same day, prior to start any treatment. Each imaging modality was read in random order by 2 reviewers independently for the detection of bone lesions (osteolytic lesions, vertebral collapses). Whole-body MRI was performed in case of disagreement between the 2 imaging modalities. Radiation dose and technical comfort were also assessed. The length of time of either exam was measured and the patients had to fill in a quality of life questionnaire aimed at comparing the roughness of the 2 techniques. Our study received prior approval from our Ethics Committee. Results. The median age was 62 (range, 32–90), gender ratio was 30 male / 26 female. CR and EOS® diagnosed 467 and 451 bone lytic lesions, respectively. There was no significant difference between the 2 imaging techniques, as 445 out of 473 bone lesions were detected by both the EOS®system and the CR. The median length of time to perform the CR exam was 6 to 8 times longer than EOS® technique. The average radiation dose with the EOS®system was 7.8 times less than with CR. The majority of the patients found the EOS®system examination to be more comfortable than the multiple radiographic incidences. The main limitation to EOS® technique was in patients with high BMI greater than 30, in whom CR remains the most sensitive technique. Furthermore, EOS® system was not able to differentiate old versus novel lytic lesions, as expected with standard radiographs. Finally, EOS presented with the same difficulty to count the number of lytic lesions per patient, as for the CR technique. Conclusion. EOS® system is a new low-dose radiation device which allows a quicker scan of the whole body. In this preliminary study performed in patients with MM, this technique allowed detection of bone lesions with better comfort for the patients as compared to CR. This is of paramount importance in patients with MM that often presented with altered health status and bone pain that hampered the ability to perform CR with optimal conditions. Disclosures: Facon: Celgene: Consultancy, Honoraria; Janssen-Cilag: Consultancy, Honoraria.


2018 ◽  
Vol 11 (12) ◽  
pp. 676-679
Author(s):  
Joshua Getty

Palliative care traditionally focused on symptom-control in dying patients, but has recently evolved to include care of life-threatening or limiting conditions by optimising the benefits of treatment and considering other ways to improve the quality of life for patients. This is achieved through holistic consideration of physical, psychosocial and spiritual factors affecting the individual patient. The aim of this article is to explore these factors and initial management options.


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