This document discusses the potential benefits of palliative care services for patients with cystic fibrosis and sickle cell disease. It outlines how palliative care can improve patients' quality of life by effectively managing their symptoms like pain, fatigue, and anxiety. The document also notes challenges these patients face, like frequent hospitalizations and low quality of life due to their conditions. It argues palliative care should be instituted early to help alleviate symptoms and allow patients to have increased opportunities for an improved quality of life. The document concludes by discussing barriers to palliative care services and the importance of expanding resources to help meet the needs of these patient populations.
Nothing is more certain than the fact we are all aging even as you read this line. The best health prevention is not targeting disease by disease but rather how to slow down the ageing process
10 TESIS PENGARUH UMUR, DEPRESI DAN DEMENSIA TERHADAP DISABILITAS FUNGSIONAL ...Bondan Palestin
Kelompok lansia dipandang sebagai kelompok masyarakat yang berisiko (population at risk) mengalami gangguan kesehatan. Oleh karenanya, kelompok lansia merupakan kelompok risiko tinggi yang menjadi perhatian utama dalam cabang ilmu keperawatan komunitas. Masalah keperawatan yang menonjol pada kelompok tersebut adalah meningkatnya disabilitas fungsional fisik sebagai dampak dari respon lansia terhadap proses penuaan, penyakit kronis, atau status psikososialnya. Disabilitas fungsional lansia sebagai efek dari perubahan fisiologis (umur depresi dan demensia) memungkinkan untuk dijelaskan melalui Model Sistem Neuman (MSN). Mengingat MSN memiliki banyak interrelasi konsep sehingga derivasi teori konseptual tersebut lebih bersifat kontekstual. Oleh karenanya, peneliti bermaksud agar penelitian ini dapat digunakan sebagai studi pendahuluan terhadap penelitian-penelitian mengenai disabilitas fungsional yang lebih kompleks. Gigliotti (2003) berpendapat bahwa kredibilitas MSN hanya dapat dikembangkan melalui proses derivasi dan pengujian teori antara (middle-range theory) sebagai derivat dari MSN.
Care of Sickle Cell Disease Patients: Process Improvement & Change with NursesTosin Ola-Weissmann
Populations with SCD are at risk for disparities primarily because of the lack of knowledge on the part of the healthcare providers regarding the disease; inadequate pain management and prejudice among the staff (Tanabe & Myers, 2007).
On interviewing several nurses in the hospital, many acknowledge that they have never taken care of a patient with SCD and do not know what to assess for. The only nurse with experience of taking care of a SCD patient did not know the complications of the disease and wondered why sickle cell patients “always request pain medication when it’s obvious they are not in pain.”
This presentation is a guide providing essential information to medical professionals on dealing with patients that have sickle cell anemia. In addition, the SCD questionnaire is designed to enhance the assessment of SCD patients by medical professionals in the emergency room and serve as a platform for understanding their vulnerabilities during assessment.
Emphasis of this questionnaire is placed on identifying risk factors for depression, the patient’s socio-economic barriers, lifestyle habits, transportation issues, safe home environment, effective pain management and avenues for possible genetic counseling all of which sickle cell patients have shown vulnerability to (Dorsey & Murdaugh, 2003).
Many people wonder whether a cancer patient's attitude or personality type can impact their prognosis. In this SlideShare, Dana Nolan, a Mental Health Counselor, takes a closer look at how personality, attitude and cancer relate for our August 2016 support group session.
Nothing is more certain than the fact we are all aging even as you read this line. The best health prevention is not targeting disease by disease but rather how to slow down the ageing process
10 TESIS PENGARUH UMUR, DEPRESI DAN DEMENSIA TERHADAP DISABILITAS FUNGSIONAL ...Bondan Palestin
Kelompok lansia dipandang sebagai kelompok masyarakat yang berisiko (population at risk) mengalami gangguan kesehatan. Oleh karenanya, kelompok lansia merupakan kelompok risiko tinggi yang menjadi perhatian utama dalam cabang ilmu keperawatan komunitas. Masalah keperawatan yang menonjol pada kelompok tersebut adalah meningkatnya disabilitas fungsional fisik sebagai dampak dari respon lansia terhadap proses penuaan, penyakit kronis, atau status psikososialnya. Disabilitas fungsional lansia sebagai efek dari perubahan fisiologis (umur depresi dan demensia) memungkinkan untuk dijelaskan melalui Model Sistem Neuman (MSN). Mengingat MSN memiliki banyak interrelasi konsep sehingga derivasi teori konseptual tersebut lebih bersifat kontekstual. Oleh karenanya, peneliti bermaksud agar penelitian ini dapat digunakan sebagai studi pendahuluan terhadap penelitian-penelitian mengenai disabilitas fungsional yang lebih kompleks. Gigliotti (2003) berpendapat bahwa kredibilitas MSN hanya dapat dikembangkan melalui proses derivasi dan pengujian teori antara (middle-range theory) sebagai derivat dari MSN.
Care of Sickle Cell Disease Patients: Process Improvement & Change with NursesTosin Ola-Weissmann
Populations with SCD are at risk for disparities primarily because of the lack of knowledge on the part of the healthcare providers regarding the disease; inadequate pain management and prejudice among the staff (Tanabe & Myers, 2007).
On interviewing several nurses in the hospital, many acknowledge that they have never taken care of a patient with SCD and do not know what to assess for. The only nurse with experience of taking care of a SCD patient did not know the complications of the disease and wondered why sickle cell patients “always request pain medication when it’s obvious they are not in pain.”
This presentation is a guide providing essential information to medical professionals on dealing with patients that have sickle cell anemia. In addition, the SCD questionnaire is designed to enhance the assessment of SCD patients by medical professionals in the emergency room and serve as a platform for understanding their vulnerabilities during assessment.
Emphasis of this questionnaire is placed on identifying risk factors for depression, the patient’s socio-economic barriers, lifestyle habits, transportation issues, safe home environment, effective pain management and avenues for possible genetic counseling all of which sickle cell patients have shown vulnerability to (Dorsey & Murdaugh, 2003).
Many people wonder whether a cancer patient's attitude or personality type can impact their prognosis. In this SlideShare, Dana Nolan, a Mental Health Counselor, takes a closer look at how personality, attitude and cancer relate for our August 2016 support group session.
2006 presentation at The European Health Psychology Conference in Bath: Can We Bury the Idea That Psychotherapy Extends the survival of Cancer Patients?
2006 presentation at The European Health Psychology Conference in Bath: Can We Bury the Idea That Psychotherapy Extends the survival of Cancer Patients?
Caring for all in the last year of life: making a difference.Bruce Mason
Inaugural presentation by Prof. Scott A. Murray, St Columba's Hospice Chair of Primary Palliative Care, Primary Palliative Care Research Group, Centre for Population Health Sciences: General Practice Section, University of Edinburgh. April 21, 2009
Fact Sheet onFact Sheet onFact Sheet onFact Sheet onFact Sheet on
End-of-Life CareEnd-of-Life CareEnd-of-Life CareEnd-of-Life CareEnd-of-Life Care
WHAT ARE OLDER ADULTS’ MENTAL HEALTH NEEDS
NEAR THE END OF LIFE?
The US Supreme Court agreed that Americans should expect palliative care,
which combines active and compassionate therapies to comfort and support
individuals and families nearing the end of life. End of life is defined as that
time period when health care providers would not be surprised if death
occurred within about 6 months. Older Americans with chronic illness think
about how they would prefer their lives to end, and want a “good death”
without burdensome pain, symptoms and technology.
Most deaths (70%) occur in those aged 65 and older. Older adults want better discussions,
information, and a chance to influence decisions about their care—whether to be at home
or in the hospital and to have CPR (cardiopulmonary resuscitation) (Foley, 1995). Most
Americans die in hospitals (63%), and another 17% die in institutional settings such as
long-term care facilities (Foley, 1995; Isaacs & Knickman, 1997). In addition, most
people are referred too late to hospice or palliative care, so they are unable to get the most
benefit possible from these specialized services.
WHAT DO OLDER ADULTS FEAR MOST?
People fear that their pain, symptoms, anxiety, emotional suffering, and family
concerns will be ignored. Many critically ill people who die in hospitals still receive
unwanted distressing treatments and have prolonged pain. Many fear that their
wishes (advance directives) will be disregarded and that they will face death alone
and in misery. Physicians may use confusing or vague medical terms and talk briefly
about treatment options when the patients are too sick to participate. Most people
want to discuss advance directives when they are healthy and often want their
families involved.
Caregivers reported that a third of 1227 elderly individuals were in unnecessary pain
during the 24 hours before their death. Studies show that two thirds of elderly patients have
pain in the last month of life (Foley, 1995). Although palliative/comfort care could relieve
most of this pain and suffering, patients typically spend 8 days in ICU (an intensive care
unit) comatose or on a ventilator and 30% of patients spend at least 10 days in ICU
before they die (Isaacs & Knickman, 1997).
When discussing a good end of life with a patient, physicians in one study talked about 5-6
minutes, spoke for 2/3 of this time, and did not consider the patient’s values or preferences
(Tulsky, Fischer, Rose & Arnold, 1998). If patients were too sick to make decisions, most
wanted their family to be given choices about treatment and only 41% wanted the
physician to make treatment decisions without consulting them. In 91% of cases in which
physicians discussed end of life treatment options, they did so in scenarios in which most
patients would not want to be treated, whereas o ...
Planning for the future - when does the future start? Laura-Jane Smith
Presentation at PLAN Network event, on advance care planning in chronic respiratory disease. NB last few slides are resources for the group task, and references. Let me know i I missed any!
Review of health literacy: analyzed a total of 7 meta-analyses, 7 randomized control trials, 11 retrospective cohorts and 9 cross-sectional surveys. These slides include the findings and conclusions from the strongest evidence.
Rapid response systems (RRSs) have become a routine part of the way patients are managed in general wards of acute care hospitals. They have been adopted by national health and safety organisations in North America, Canada, the United Kingdom and Australia and are increasingly being used in other parts of the world.
Studies have almost universally shown significant reductions in outcome indicators such as mortality (up to one third) and cardiac arrest rates (up to 50%). However the validity of these outcomes is questionable as most of these studies are single-centre, before-and-after studies conducted by one or two clinical champions in Rapid Response.
This presentation reveals that the implementation of an Intensivist led Rapid Response Team in an Australian quaternary hospital did not demonstrate such dramatic results. In fact, after one year of service the standardised mortality ratio and the in-hospital cardiac arrest rate remained similar.
The presentation explores some of the operational impacts of a RRS including the replacement of critical thinking with reliance on protocols and the progressive super-specialisation of medical teams. Despite these impacts and relatively static patient outcome data, the service has rapidly become an integral part of the hospital.
Barriers between Intensive Care and ward staff have broken down and quality outcome results have consistently shown ward nurses and doctors feel better prepared, educated and supported in managing clinical deterioration. These surprising results raise the question; should we place more value in quality outcomes?
Haptic medicine - sustainable, accessible, low-cost0neW0rldT0gether
How we heal is different than we think. Places like Scripps, Stanford, and many more are finding ancient healing arts involving touch bring comfort and effectiveness. We describe some of the science that explains what we experience and how it helps us heal and some of the amazing stories like The Rescuing Hug. We also describe the health education work to take these sustainable methods from hospital to community including the work of American Holistic Nursing Association and www.21stcenturymed.org, a low bandwidth multi-lingual self help site based on methods used at Stanford Hospital. Presented at MIT Alumni Club/Future Health Technology Institute and the NIH International Programs in Washington D.C. 2009 Contact: cindymason@media.mit.edu
The type of illness that results from too much stress depends on a v.docxwsusan1
The type of illness that results from too much stress depends on a variety of factors. Your age, gender, ethnic heritage, culture, and even geographical location all influence your response to developing stress-related illnesses. Some populations are more vulnerable to the effects of stress, just as some populations are more susceptible to certain diseases. Population-based health care focuses on assessing health needs, planning culturally sensitive prevention and intervention programs, and improving public health.
In this context, populations are groups of people defined by a common condition that perhaps need focused health education, prevention programs, or treatment. The following are some examples of populations:
Pregnant women
Military personnel returning from war
Those with low socioeconomic status
Those experiencing discrimination
Refugees
Those with asthma
The elderly
Those experiencing significant loss
Illegal immigrants
Those with cardiovascular disease
Adult survivors of childhood sexual abuse
Victims of crime
Those with serious mental illness
Whether it is poverty, grief, or discrimination, the variety of stressors that members of these populations might encounter does not vanish overnight. As a result, the persistence of stress can contribute to long-lasting illness or chronic disease, such as heart disease, stroke, cancer, diabetes, obesity, and arthritis. Seventy percent of all deaths in the United States are due to chronic disease. Fifty percent of Americans have at least one chronic disease. Chronic diseases are the most common and expensive diseases facing the world and since most chronic diseases have modifiable risk factors, most are preventable. The most common modifiable risks are poor diet, lack of exercise, and tobacco, alcohol, or drug use.
For this Discussion, review this week’s Learning Resources including the Stress and Immune-Related Disease” section of the “ Stress, the Immune System, Chronic Illness, and Your Body” handout. Select an illness to use for this Discussion. Think about a population that is more susceptible to this illness and a population that is less susceptible to this illness.
With these thoughts in mind:
Post by Day 4
a brief description of the illness you selected. Then describe one population that is more susceptible and one population that is less susceptible to this illness and explain why. Include how stress and coping might differ between these populations. Be specific.
Course Text:
Aldwin, C. M. & Yancura, L. (2011). Stress, coping, and adult development. In R. J. Contrada & A. Baum (Eds.),
The handbook of stress science: Biology, psychology, and health
(pp. 263–274)
.
New York, NY: Springer Publishing Company.
Course Text:
Brandolo, E., Brady ver Halen, N., Libby, D., & Pencille, M. (2011). Racism as a psychosocial stressor. In R. J. Contrada & A. Baum (Eds.),
The handbook of stress science: Biology, psychology, and health
(pp. 167–184)
.
New.
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Ve...kevinkariuki227
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Verified Chapters 1 - 19, Complete Newest Version.pdf
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Verified Chapters 1 - 19, Complete Newest Version.pdf
These lecture slides, by Dr Sidra Arshad, offer a quick overview of physiological basis of a normal electrocardiogram.
Learning objectives:
1. Define an electrocardiogram (ECG) and electrocardiography
2. Describe how dipoles generated by the heart produce the waveforms of the ECG
3. Describe the components of a normal electrocardiogram of a typical bipolar leads (limb II)
4. Differentiate between intervals and segments
5. Enlist some common indications for obtaining an ECG
Study Resources:
1. Chapter 11, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 9, Human Physiology - From Cells to Systems, Lauralee Sherwood, 9th edition
3. Chapter 29, Ganong’s Review of Medical Physiology, 26th edition
4. Electrocardiogram, StatPearls - https://www.ncbi.nlm.nih.gov/books/NBK549803/
5. ECG in Medical Practice by ABM Abdullah, 4th edition
6. ECG Basics, http://www.nataliescasebook.com/tag/e-c-g-basics
The prostate is an exocrine gland of the male mammalian reproductive system
It is a walnut-sized gland that forms part of the male reproductive system and is located in front of the rectum and just below the urinary bladder
Function is to store and secrete a clear, slightly alkaline fluid that constitutes 10-30% of the volume of the seminal fluid that along with the spermatozoa, constitutes semen
A healthy human prostate measures (4cm-vertical, by 3cm-horizontal, 2cm ant-post ).
It surrounds the urethra just below the urinary bladder. It has anterior, median, posterior and two lateral lobes
It’s work is regulated by androgens which are responsible for male sex characteristics
Generalised disease of the prostate due to hormonal derangement which leads to non malignant enlargement of the gland (increase in the number of epithelial cells and stromal tissue)to cause compression of the urethra leading to symptoms (LUTS
Knee anatomy and clinical tests 2024.pdfvimalpl1234
This includes all relevant anatomy and clinical tests compiled from standard textbooks, Campbell,netter etc..It is comprehensive and best suited for orthopaedicians and orthopaedic residents.
New Directions in Targeted Therapeutic Approaches for Older Adults With Mantl...i3 Health
i3 Health is pleased to make the speaker slides from this activity available for use as a non-accredited self-study or teaching resource.
This slide deck presented by Dr. Kami Maddocks, Professor-Clinical in the Division of Hematology and
Associate Division Director for Ambulatory Operations
The Ohio State University Comprehensive Cancer Center, will provide insight into new directions in targeted therapeutic approaches for older adults with mantle cell lymphoma.
STATEMENT OF NEED
Mantle cell lymphoma (MCL) is a rare, aggressive B-cell non-Hodgkin lymphoma (NHL) accounting for 5% to 7% of all lymphomas. Its prognosis ranges from indolent disease that does not require treatment for years to very aggressive disease, which is associated with poor survival (Silkenstedt et al, 2021). Typically, MCL is diagnosed at advanced stage and in older patients who cannot tolerate intensive therapy (NCCN, 2022). Although recent advances have slightly increased remission rates, recurrence and relapse remain very common, leading to a median overall survival between 3 and 6 years (LLS, 2021). Though there are several effective options, progress is still needed towards establishing an accepted frontline approach for MCL (Castellino et al, 2022). Treatment selection and management of MCL are complicated by the heterogeneity of prognosis, advanced age and comorbidities of patients, and lack of an established standard approach for treatment, making it vital that clinicians be familiar with the latest research and advances in this area. In this activity chaired by Michael Wang, MD, Professor in the Department of Lymphoma & Myeloma at MD Anderson Cancer Center, expert faculty will discuss prognostic factors informing treatment, the promising results of recent trials in new therapeutic approaches, and the implications of treatment resistance in therapeutic selection for MCL.
Target Audience
Hematology/oncology fellows, attending faculty, and other health care professionals involved in the treatment of patients with mantle cell lymphoma (MCL).
Learning Objectives
1.) Identify clinical and biological prognostic factors that can guide treatment decision making for older adults with MCL
2.) Evaluate emerging data on targeted therapeutic approaches for treatment-naive and relapsed/refractory MCL and their applicability to older adults
3.) Assess mechanisms of resistance to targeted therapies for MCL and their implications for treatment selection
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Lung Cancer: Artificial Intelligence, Synergetics, Complex System Analysis, S...Oleg Kshivets
RESULTS: Overall life span (LS) was 2252.1±1742.5 days and cumulative 5-year survival (5YS) reached 73.2%, 10 years – 64.8%, 20 years – 42.5%. 513 LCP lived more than 5 years (LS=3124.6±1525.6 days), 148 LCP – more than 10 years (LS=5054.4±1504.1 days).199 LCP died because of LC (LS=562.7±374.5 days). 5YS of LCP after bi/lobectomies was significantly superior in comparison with LCP after pneumonectomies (78.1% vs.63.7%, P=0.00001 by log-rank test). AT significantly improved 5YS (66.3% vs. 34.8%) (P=0.00000 by log-rank test) only for LCP with N1-2. Cox modeling displayed that 5YS of LCP significantly depended on: phase transition (PT) early-invasive LC in terms of synergetics, PT N0—N12, cell ratio factors (ratio between cancer cells- CC and blood cells subpopulations), G1-3, histology, glucose, AT, blood cell circuit, prothrombin index, heparin tolerance, recalcification time (P=0.000-0.038). Neural networks, genetic algorithm selection and bootstrap simulation revealed relationships between 5YS and PT early-invasive LC (rank=1), PT N0—N12 (rank=2), thrombocytes/CC (3), erythrocytes/CC (4), eosinophils/CC (5), healthy cells/CC (6), lymphocytes/CC (7), segmented neutrophils/CC (8), stick neutrophils/CC (9), monocytes/CC (10); leucocytes/CC (11). Correct prediction of 5YS was 100% by neural networks computing (area under ROC curve=1.0; error=0.0).
CONCLUSIONS: 5YS of LCP after radical procedures significantly depended on: 1) PT early-invasive cancer; 2) PT N0--N12; 3) cell ratio factors; 4) blood cell circuit; 5) biochemical factors; 6) hemostasis system; 7) AT; 8) LC characteristics; 9) LC cell dynamics; 10) surgery type: lobectomy/pneumonectomy; 11) anthropometric data. Optimal diagnosis and treatment strategies for LC are: 1) screening and early detection of LC; 2) availability of experienced thoracic surgeons because of complexity of radical procedures; 3) aggressive en block surgery and adequate lymph node dissection for completeness; 4) precise prediction; 5) adjuvant chemoimmunoradiotherapy for LCP with unfavorable prognosis.
ARTIFICIAL INTELLIGENCE IN HEALTHCARE.pdfAnujkumaranit
Artificial intelligence (AI) refers to the simulation of human intelligence processes by machines, especially computer systems. It encompasses tasks such as learning, reasoning, problem-solving, perception, and language understanding. AI technologies are revolutionizing various fields, from healthcare to finance, by enabling machines to perform tasks that typically require human intelligence.
Acute scrotum is a general term referring to an emergency condition affecting the contents or the wall of the scrotum.
There are a number of conditions that present acutely, predominantly with pain and/or swelling
A careful and detailed history and examination, and in some cases, investigations allow differentiation between these diagnoses. A prompt diagnosis is essential as the patient may require urgent surgical intervention
Testicular torsion refers to twisting of the spermatic cord, causing ischaemia of the testicle.
Testicular torsion results from inadequate fixation of the testis to the tunica vaginalis producing ischemia from reduced arterial inflow and venous outflow obstruction.
The prevalence of testicular torsion in adult patients hospitalized with acute scrotal pain is approximately 25 to 50 percent
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These simplified slides by Dr. Sidra Arshad present an overview of the non-respiratory functions of the respiratory tract.
Learning objectives:
1. Enlist the non-respiratory functions of the respiratory tract
2. Briefly explain how these functions are carried out
3. Discuss the significance of dead space
4. Differentiate between minute ventilation and alveolar ventilation
5. Describe the cough and sneeze reflexes
Study Resources:
1. Chapter 39, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 34, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 17, Human Physiology by Lauralee Sherwood, 9th edition
4. Non-respiratory functions of the lungs https://academic.oup.com/bjaed/article/13/3/98/278874
2. Objective
Palliative care can be of help to patients
with sickle cell and cystic fibrosis.
By continuing to build a strong inpatient
team and increase resources we can
extend our services to a full outpatient
service.
6. Cystic Fibrosis
Most common multiorgan genetic
disease in the
Caucasian
population
Devastating chronic
lung disease
Medical advances
Low quality of life
Tuchman et al. 2010
8. Cystic Fibrosis
Patients who receive
palliative care derive
clear benefit
Rapid alleviation of
symptoms
Aggressive use
medications
Robinson W. 2000
Yankaskas JR et al. 2004
Stenekes SJ et al. 2009
12. Sickle Cell Disease
Common life-limiting
genetic disease
Increased life span
Frequent
hospitalizations, soci
al isolations
Low quality of life
Mehran et al 2012
Dale et al 2009
Strickland et al 2001
Musaliam et al 2008
13. Sickle Cell Disease
Unpredictable
episodes of pain
Begins in early
childhood
Rigorous and time
consuming
treatments
Disruption of quality
of life
McCish et al 2005
Haines et al 2013
Quinn et al 2008
Stegenga e t al 2004
16. Sickle Cell Disease
Adversarial
relationship between
pt and medical team
Under treatment of
pain
Mistrust/
Marginalization
Decreased societal
function
McClain et al 2007
Ross-Lee et al 1994
Labbe et al. 20006
Laurence B et al 2006
24. Work Cited
Tuchman, LK, Schwartz, LA et al. Cystic fibrosis and transition to adult medical care.
Pediatrics 2010; 125;566.
Dellon EP, Shores MD, Nelson KI, Wolfe J, et al. Family caregiver perspectives on
symptoms and treatments for patients dying from complications of cystic fibrosis. J Pain
Symptom Manage 2010; 40 (6):829-37.
Urquhart DS, Thia LP, Francis J, et al. Deaths in children with cystic fibrosis: 10-year
analysis from two London specialist centres. Arch Dis Child 2013; 98:123-127.
Robinson W. Palliative care in cystic fibrosis. J. Palliative Med. 2000 Summer; 3(2)
187-92
Yankaskas JR, Marshall BC, Sufian B, Simon RH, Rodman D. Cystic fibrosis adult
care: consensus conference report. Chest 2004;125(1Suppl):1S–39S.
Stenekes SJ, Hughes A, Grégoire MC, Frager G, Robinson WM, McGrath PJ.
Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis. J Pain
Symptom Manage 2009;38(6):837–48.
Bradley JM, BLume SW et al. Quality of Life and Healthcare utilization in cystic fibrosis:
a multicenter study. Eur Respir J. 2013 Mar;41(3): 571-7
25. Work Cited
Mehran Karimi, Sezaneh Haghpanah, Alit T. Taher, Maria Domenica Cappellini. "Beta Thalassemia:
New Theraputic Modalities, Genetics, Complications, and Quality of LIfe." Anemia (2012): 1.
Juanita Conkin Dale, Cindy J. Cochran, Lonnie Roy, Ethel Jerigan, Geroge R. Buchanan. "Healthrelated Quality of LIfe in Children and Adolescents with Sickle Cell Disease." Journal of Pediatric
Health Care 25.4 (2009): 208-15.
Ora Lea Strickland, Gerogia Jackson, Maggie Gilead, Deborah B. McGuire, Shirely Quarles. "Use of
Foucs Groups for Pain and Quality of LIfe Asessment in Adults with Sickle Cell Disease." Journal of
National Black Nurses Association 12.2 (2001): 36-43.
Khaled Musallam, Maria D. Cappellini, Ali Taher. "Challenges Associated with Prolonged Survival of
Patients with Thalassemia: Transitioning from Childhood to Adulthood." Pediatrics 121.5 (2008).
Donna K McClish, Lynne T Penberthy, Viktor E Bovbjerg, John D Roberts, Imoigele P Aisiku, James L
Levenson, Susan D Roseff, Wally R Smith. "Health related quality of life in sickle cell patients: The
PiSCES project." Health and Quality of LIfe Outcomes 3.50 (2005).
Dru Haines, Marie Martin, Susan Carson, Olivia Oliveros, Sage Greet et al. "Pain in thalassaeimia:
The effects of age on pain frequency and severity." British Journal of Haematology 160 (2013): 680687.
Miller ST, Sleeper LA, Pegelow CH, Enos LE, Wang WC, Weiner SJ, et al. "Predictions of adverse
outcomes in children with sickle cell disease." New England Journal of Medicine 342.2 (2000): 83-9.
Quinn CT, Lee NG, Shull EP, Ahmad N, Rogers ZR, Buchanan GR. "Predictions of adverse outcomes
in children with sickle cell anemia: A study of the Dallas Newborn Cohort." Blood 111.2 (2008): 544-8.
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Editor's Notes
The overall objective of this talk is to show how palliative care can be of help to patients with sickle cell and cystic fibrosis. It is our hope that by continuing to build a strong inpatient team and increase our resources we can extend our services to a full outpatient service. Overview of Palliative Care ServicesOverview of Sickle Cell DiseaseOverview of Cystic FibrosisThe needA possible solution
The primary mission of palliative care is to improve quality of life for patients and families. This is done using a multidisciplinary team often including physicians, nurse practitioners, nurses, social workers and spiritual counselors who seeks to address the needs of patients and families on corporeal, emotional and spiritual levels. Teams assist with identifying and offering support services to help the patient and family cope as they navigate illness
The unique multidisciplinary functionality of these teams allow them to be expert at eliciting patient & family goals of care, initiating advance care planning and providing continuity of care.Quality of life has been demonstrated to be further improved through expert management of pain and other physical symptoms.
What areas of Cystic Fibrosis care, do you think that palliative care can positively impact?
Cystic Fibrosis is the most common multi-organ genetic disease in the Caucasian population and leads to devastating chronic lung disease, recurrent infection, bronchiectasis and malnutrition due to pancreatic insufficiency. Advances in therapy for CF have dramatically increased the average life span, so that current birth cohorts are expected to live into their 50s. There has not, however, been concurrent, significant progress in improving quality of life. Achieving meaningful gains in quality of life for patients with CF has been shown to be important not only for providers but also for these patients and their families.
Literature demonstrates that, across the spectrum of disease, the most prevalent symptoms from which patients with cystic fibrosis suffer are dyspnea, fatigue, anorexia, anxiety, pain and cough. Despite this symptom burden, little attention is paid to methods of palliative care for patients with cystic fibrosis in the medical literature unless it relates to end-of-life or end-stage disease; in fact, even in these circumstances, palliative care referrals are woefully limited. A recent study examining the end-of-life circumstances of children with CF showed that, palliative care should be instituted well in advance, with ongoing attention to quality of life management and EOL planning.
The patients who do receive palliative care derive clear benefit. Unfortunately, the data is presently limited to the terminal phase of disease where the primary need is medical management of symptoms, such as dyspnea, nausea, pain, anxiety, and confusion. Palliative care teams are able to rapidly alleviate these symptoms using aggressive pharmacotherapeutics and thus improve the patient’s quality of life.
What about transplant? Among patients and families, the goal of treatment is to reach lung transplant.We as health care providers know that there is still significant mortality after transplant. Yet, transplantation has the potential to produce profound effects on survival and health-related quality of life (HRQL). Traditionally, the assessment of outcomes in lung transplantation has focused on patient survival. Lung transplantation has lower long-term survival compared with many other solid-organ transplants.1 Graft failure, chronic rejection, or broncholitisobliterans syndrome (BOS) and infections.This study looked at patient’s perspectives on their health related quality of life after transplant as part of the assessment. The authors found that cystic fibrosis patients, single-lung transplants, and older patients showed significantly lower HRQL. After lung transplantation, emotional health and pain continue to be negatively affected
Despite this demonstrated success, initiating palliative care involvement only after disease-directed treatment options have been exhausted and the patient is dying, deprives the patient and her family of the opportunity to have improved quality of life throughout the disease course. Best practice would be to include patients who are still receiving standard cystic fibrosis care – who are actively pursuing potentially curative treatment; this would ensure access to palliative care for all patients who can benefit.
Do you think about palliative care and patient’s with sickle cell?What areas of sickle cell care, do you think that palliative care can positively impact?
Sickle cell disease is among the most common life-limiting genetic disease in ethnic minorities characterized by diverse co-morbidities related to nearly every organ system.Similarly Medical advancement in this disease process has dramatically increased the life span for patients so that the vast majorities are living well into adulthood.However, the intensive daily treatments, frequent hospitalizations, social isolation, and long-term endurance of troublesome symptoms of chronic illness that have been necessary consequences of these advances can detract significantly from quality of life.
One of the most profound and devastating factors affecting patients’ quality of life is the unpredictable episodes of pain. A hallmark symptom by which the sickle cell disease is defined, pain is a common experience in children beginning as early as 4-6 months of age, with dactylitis as an early prognostic indicator for increased complications.Yet despite the advances leading to life prolongation in these diseases, pain is still undertreated, and in some cases not fully understood. Hemoglobin SS is the most severe form of SCD and carries an increased risk for stroke and severe pain crisis. Although the initial treatment for stroke and pain is an exchange transfusion, the treatment plan is rigorous and time consuming, but leads to increased survival.However, simply surviving is not adequate; the quality of survival has emerged as an essential focus of comprehensive health care. The presence of physical symptoms, combined with disease management routines (transfusions, repeated clinic visits and multiple hospitalizations) disrupts the daily life of these children and significantly diminishes their quality of life.
Further, a large body of research demonstrates that this patient population also suffers from multiple disease related psychosocial symptoms including depression, poor coping skills and others that further diminish their quality of life.Those patients who do not currently suffer from these symptoms are at increased risk for development and need to be monitored. In the biopsychosocial model describing the pathogenesis of psychiatric conditions, the development of psychiatric disorders is related to the impact of the following sequence of events: genetic predisposition, early life events, and current stressful life events.Sickle cell disease affect the latter two factors. This means that the chances of patients with these hemoglobinopathies developing serious psychiatric conditions or mood disorders, beyond the anxiety, guilt, shame, or depression that may accompany any normal stressful situation, are increased.
Patients with severe hemoglobinopathies are seen repeatedly in emergency rooms and the inpatient setting for long periods of time, seeking relief from their symptoms. Furthermore, it has been shown that patients with hemoglobinopathies and a comorbid history of mental health diagnosis experience even longer hospitalization days.
The relationship between patients with SCD and health care providers has been noted to be adversarial.Indeed, attitudes of the caregiver toward patients with SCD reportedly contribute to the under treatment of sickle cell–related pain.This creates mistrust between patients and health care providers and contributes to patients with SCD experiencing emotional marginalization, amplification in depressive moods, and expressed helplessness and hopelessness.Deficiencies in school readiness have been noted in children with SCD that do not seem to be caused by the underlying medical pathology. These factors can culminate in adolescents/Young adults as social anxiety and manifest as anger and low expectations; feelings of disfranchisement will result in limited productivity in the adult workforce with resultant dwindling expectations from medical and lay communities.
Within these two disease populations, we have patients that push the traditional boundaries palliative care, yet are of clear need.How can palliative care be useful?
There are overarching themes that apply to both populations, but let us first address the marginalization of patients with sickle cell disease.Using palliative care philosophies in the management of patients with SCD could change the public and medical view of this population’s illness and likely have a tremendous impact on the health care system as well as patients and their families. Indeed, it is predicted that utilization of emergency department services alone would plummet if caregivers fostered better psychosocial adjustment and acceptance of this population’s dilemma.
Overall, the core ideals of integrated palliative care are open communication, timely access to care, intensive symptom management, flexibility in the implementation of interventions, ethical decision making, and attention to the quality of life of the patient, the family, parents, siblings and significant others. The interventions are patient focused and family oriented and can be modeled to fit “any place, any time,” in the hospital or the home, with home-care and other support.Palliative Care is able to accomplish this patient centered care by using a multidisciplinary team often including physicians, nurse practitioners, nurses, social workers and counselors who seek to address the needs of patients and families on physical, and emotional levels. In short, our goal is to meet the patient where they are.
Often time, when we meet the patients, we are meeting them in the hospital, towards the end of their health trajectory. Improving quality of life can be done with a hospital consult, and can shorten hospitalization stays. Goals of care conversations happen, and complex, challenging symptoms are addressed. But we can do better for patients like these. Patients with chronic illness, who face tremendous treatment burden, a large psychosocial component, and increasing symptomatology as their disease progresses.
How can this be done? Part of the solution is to strengthen the inpatient presence by seeing these patients earlier in the course of their hospitalization, to strengthen the trust and build a connection. The second part is the need for a strong outpatient component. Out patient palliative care is a natural extension of “whole patient care” and helps us reach the goal of meeting the patients where they are earlier the course of their disease.To fully utilize the components of our team and help manage symptoms well, we need work with the medical homes of these patients to establish that initial connection and trust. Members of our teams can work with the primary team to help patients manage their symptoms on an outpatient basis. This helps provide more consistent involvement across disease trajectory whether there is a cure or not.
Outpatient palliative care is a great extension of the care that is provided on the inpatient basis and will be a great benefit for patient with cystic fibrosis and SCD. One of our colleagues did an assessment of the different palliative care models that exist in San Diego. Despite the different models one consistent barriers is limited resources and over extension of restricted services. It is important to have enough team members to adequately staff both the inpatient and outpatient component. In doing so, palliative care can better address the complex, and multidimensional symptoms seen in this patient population.
In patients with Sickle Cell Disease and Cystic fibrosis, we have a patient population that paradoxically breaks the mold of what people think of, when regarding palliative care patients, yet, exemplify the very patients that can benefit from our services and care. We are dedicated to working with teams to help improve the quality of life of these patients by providing patient centered care that focuses on expert symptom management, eliciting patient & family goals of care, initiating advance care planning and providing continuity of care. Our resources may be limited, but by continuing to increase our referral basis, we will extend our resources.