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KERALA
Neighborhood network in palliative care
Suresh Kumar, Mathews Numpeli
January-June 2005, 11(1):6-9
DOI
:10.4103/0973-1075.16637
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ORIGINAL ARTICLE
Depression and demoralization as distinct syndromes: Preliminary data from a cohort of advanced cancer patients
Juliet C Jacobsen, Lauren C Vanderwerker, Susan D Block, Robert J Friedlander, Paul K Maciejewski, Holly G Prigerson
January-June 2006, 12(1):8-15
DOI
:10.4103/0973-1075.25913
The term demoralization has been used to describe existential distress and despair of patients with advanced disease.
Aim:
This study sought to determine whether a cluster of symptoms interpreted as demoralization could be identified and distinguished from a cluster of depressive symptoms.
Materials and Methods:
As part of the Coping with Cancer Study, a federally funded multi-site study of advanced cancer patients, 242 patients were interviewed on a broad range of mental health parameters related to depression, grief, quality of life, self-efficacy, coping and religiousness/spirituality.
Results:
A principal components analysis revealed separate depression and demoralization/despair factors. Seven symptoms constituted the demoralization/despair factor: loss of control, loss of hope, anger/bitterness, sense of failure, feeling life was a burden, loss of meaning and a belief that life's meaning is dependent on health and were found to be internally consistent (Cronbach's a = 0.78). Only 14.8% of subjects with "syndromal demoralization" met DSM-IV criteria for Major Depression (MDD); 7.4% for Minor Depression. Of those with MDD only 28.6% had syndromal level demoralization. Prior history of MDD predicted current MDD, but not syndromal demoralization. Demoralization, not MDD, was significantly associated with the patient's reported level of inner peacefulness. When compared with MDD, syndromal demoralization was more strongly associated with wish to live and wish to die and equally predictive of mental health service use.
Conclusion:
The symptoms of demoralization are distinct from depressive symptoms and appear to be associated with the patient's degree of inner peacefulness.
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REVIEW ARTICLES
Adverse psychosocial consequences: Compassion fatigue, burnout and vicarious traumatization: Are nurses who provide palliative and hematological cancer care vulnerable?
Brenda M Sabo
January-June 2008, 14(1):23-29
DOI
:10.4103/0973-1075.41929
The work environment significantly affects the physical, psychological, emotional and/or spiritual wellbeing of individuals is unquestionable. Adverse effects have been noted among healthcare professionals working with clients experiencing pain and suffering often associated with cancer, palliative or end-of-life care; however, little is known about how or in which manner the nurse-patient-family relationship may affect the psychosocial health and wellbeing of nurses working in these areas. Three concepts have been highlighted as most frequently associated with the adverse consequences of caring work: these are compassion fatigue (secondary traumatic stress), burnout and vicarious traumatization. The following discussion investigates these concepts and their implications on palliative and hematological cancer nursing practice.
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COVERAGE
Community participation in palliative care
Jan Stjernsward
July-December 2005, 11(2):111-117
DOI
:10.4103/0973-1075.19190
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KERALA
The evolution of palliative care programmes in North Kerala
Anil Paleri, Mathews Numpeli
January-June 2005, 11(1):15-18
DOI
:10.4103/0973-1075.16639
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ORIGINAL ARTICLES
Prevalence of pain in patients with HIV/AIDS: A cross-sectional survey in a South Indian state
Shoba N Nair, Theophin Regina Mary, S Prarthana, Preethy Harrison
January-June 2009, 15(1):67-70
DOI
:10.4103/0973-1075.53550
PMID
:20606859
Objectives:
Primary - To measure the prevalence of pain in HIV/AIDS with patients. Secondary - To assess the type, site, severity, management of pain and impact of pain on quality of life in these patients.
Design:
Multicentre cross-sectional survey (This paper is a pilot study).
Settings:
ART centre at St. John's Medical College Hospital, Bangalore and Snehadan, A supportive and care centre for HIV/ AIDS patients at Bangalore.
Materials and Methods:
Data sheet, Brief pain inventory and Short - Form McGill pain questionnaire.
Subjects:
This is an ongoing study and the pilot study includes 140 HIV/AIDS patients in different stages of the disease.
Results:
About 66.7% (28/42) in-patients and 24.5% (24/98) out-patients complained of pain. Of the 52 patients who reported pain, 32% (14/52) reported neuropathic pain and 68% (38/52) reported noci-ceptive pain. Headache was most common followed by pain in the soles of feet and low back. Only 26.9% (17/52) received any form of analgesic. Pain severity significantly affects the quality of life.
Conclusions:
Pain is a common and debilitating symptom of HIV/AIDS. It is however, under-estimated and under treated.
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REVIEW ARTICLES
Physical therapy in palliative care: From symptom control to quality of life: A critical review
Senthil P Kumar, Anand Jim
September-December 2010, 16(3):138-146
DOI
:10.4103/0973-1075.73670
PMID
:21218003
Physiotherapy is concerned with identifying and maximizing movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. Physical therapists practice in a broad range of inpatient, outpatient, and community-based settings such as hospice and palliative care centers where as part of a multidisciplinary team of care, they address the physical and functional dimensions of the patients' suffering. Physiotherapy treatment methods like therapeutic exercise, electrical modalities, thermal modalities, actinotherapy, mechanical modalities, manual physical therapy and assistive devices are useful for a range of life-threatening and life-limiting conditions like cancer and cancer-associated conditions; HIV; neurodegenerative disorders like amyotrophic lateral sclerosis, multiple sclerosis; respiratory disorders like idiopathic pulmonary fibrosis; and altered mental states. The professional armamentarium is still expanding with inclusion of other miscellaneous techniques which were also proven to be effective in improving quality of life in these patients. Considering the scope of physiotherapy in India, and in palliative care, professionals in a multidisciplinary palliative care team need to understand and mutually involve toward policy changes to successfully implement physical therapeutic palliative care delivery.
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COVERAGE
Psycho-oncology in India: Emerging trends from Kerala
Chitra Venkateswaran, T Manoj Kumar
January-June 2006, 12(1):34-38
DOI
:10.4103/0973-1075.25917
It is estimated that around 2.5 million people suffer from cancer at any given time in India. Almost 80% of patients reach hospitals in advanced stages of the disease. The majority needs palliative care, whereas only a minority of the needy receives this input. The challenge in the developing world is to evolve a culturally and socio-economically appropriate and acceptable system of care, while addressing psychosocial issues along with long-term care needs, that is accessible to the majority of those who need it. The evolution of a specific service for psychosocial care for persons and families started in the 1970s, initial work focusing mainly on research. Contributions from persons in varied topics have been outlined. Only a few organized clinical services function as part of large tertiary hospitals, oncology centers or palliative care units. The emerging trend in Northern Kerala is based on an integrated service linking training, clinical services and research activities which are linked at several levels, involving volunteers in the community. Future hopes lie in developing core groups; establishing specific clinical services liaising with cancer care teams, large scale research projects and discussion with policy makers to develop guidelines at national level.
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REVIEW
The management of terminal delirium
AD Macleod
January-June 2006, 12(1):22-28
DOI
:10.4103/0973-1075.25915
Delirium is a distressing and disturbing clinical event. Palliation of the symptoms by multi-component interventions can be effective. The goal of interventions is to raise the deliriant threshold by combined symptom relief, environmental, psychological and pharmacological interventions. Haloperidol remains the drug of choice for delirium. For intractable delirious symptoms at the end of life terminal sedation may be indicated.
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KERALA
The role of religious, social and political groups in palliative care in Northern Kerala
Libby Sallnow, Shabeer Chenganakkattil
January-June 2005, 11(1):10-14
DOI
:10.4103/0973-1075.16638
The local community has played an important and central role in the development and determination of palliative care services in Northern Kerala. This article looks at the history of the collaboration and how palliative care services have evolved over the past 4 years from 2001 to 2005. The contribution of groups such as nongovernmental organizations, charities and religious groups is outlined and benefits gained by each side discussed.
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DEBATE
Community participation in palliative care
Jan Stjernsward
January-June 2005, 11(1):22-27
DOI
:10.4103/0973-1075.16641
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REVIEW ARTICLES
Nurses' workplace stressors and coping strategies
Vickie A Lambert, Clinton E Lambert
January-June 2008, 14(1):38-44
DOI
:10.4103/0973-1075.41934
Prior research has suggested that nurses, regardless of workplace or culture, are confronted with a variety of stressors. As the worldwide nursing shortage increases, the aged population becomes larger, there is an increase in the incidence of chronic illnesses and technology continues to advance, nurses continually will be faced with numerous workplace stressors. Thus, nurses, especially palliative care nurses, need to learn how to identify their workplace stressors and to cope effectively with these stressors to attain and maintain both their physical and mental health. This article describes workplace stressors and coping strategies, compares and contrasts cross-cultural literature on nurses' workplace stressors and coping strategies, and delineates a variety of stress management activities that could prove helpful for contending with stressors in the workplace.
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Breakthrough cancer pain: Review of prevalence, characteristics and management
Seema Mishra, Sushma Bhatnagar, Prakash Chaudhary, Shiv Pratap Singh Rana
January-June 2009, 15(1):14-18
DOI
:10.4103/0973-1075.53506
PMID
:20606850
Breakthrough pain has been associated with a reduced likelihood of adequate pain control. Despite the large and variable incidence of this phenomenon due to varied definitions of this type of pain, only a few studies have been conducted to assess and effectively treat breakthrough pain though the importance of managing breakthrough pain has been acknowledged by all. A large number of drugs from various classes and novel methods of administration like nasal and transmucosal buccal route, as in the case of fentanyl, have been used in these studies to manage this type of pain. A drug is needed with a quick onset of action and optimal duration that matches the characteristics of breakthrough pain. Some steps have been taken in earlier studies which used nasal formulation of fentanyl as it was found to achieve adequate and quick pain relief. However, further studies are required to confirm this so that in the future we can have as effective protocols for managing breakthrough pain as we have today for managing persistent pain as given by the World Health Organization.
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ORIGINAL ARTICLES
Palliative care physicians' religious / world view and attitude towards euthanasia: A quantitative study among flemish palliative care physicians
B Broeckaert, J Gielen, T Van Iersel, S Van den Branden
January-June 2009, 15(1):41-50
DOI
:10.4103/0973-1075.53511
PMID
:20606855
Aims:
To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia.
Materials and Methods:
An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation,religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded.
Results:
We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities.
Conclusions:
In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.
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REVIEW ARTICLES
Communication with relatives and collusion in palliative care: A cross-cultural perspective
Santosh K Chaturvedi, Carmen G Loiselle, Prabha S Chandra
January-June 2009, 15(1):2-9
DOI
:10.4103/0973-1075.53485
PMID
:20606848
Handling collusion among patients and family members is one of the biggest challenges that palliative care professionals face across cultures. Communication with patients and relatives can be complex particularly in filial cultures where families play an important role in illness management and treatment decision-making. Collusion comes in different forms and intensity and is often not absolute. Some illness-related issues may be discussed with the patient, whereas others are left unspoken. Particularly in palliative care, the transition from curative to palliative treatment and discussion of death and dying are often topics involving collusion. Communication patterns may also be influenced by age, gender, age, and family role. This paper outlines different types of collusion and how collusion manifests in Indian and Western cultures. In addition, promising avenues for future research are presented.
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Treatment decisions in advanced disease: A conceptual framework
Bert Broeckaert, The Flemish Palliative Care Federation
January-June 2009, 15(1):30-36
DOI
:10.4103/0973-1075.53509
PMID
:20606853
This English translation, made by a professional translator in close cooperation with the author and kindly proofread by Dr. Phil Larkin, follows the original text as closely as possible. However, though we thought it was wise to maintain the official (but not unproblematic) Dutch/Belgian definition of euthanasia in the original text (written for Belgian readers), the English texts offers a new and clearer definition of euthanasia. From the very beginning of the Belgian euthanasia debate in 1999, the Flemish Palliative Care Federation has chosen not to stay on the sideline, but to take an active part in the discussion and formulate recommendations based on our expertise and experience. Time and again we have pointed out that the ethical issues at the end of life are not just restricted to those of euthanasia. We have found that there is still much confusion about, for example, the difference or the boundary between pain control and euthanasia or between euthanasia and withholding life-sustaining treatment. Therefore, we thought it appropriate to put the following conceptual framework with regard to treatment decisions in advanced illness forward.
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PRACTITIONER SECTION
Mechanism-based classification of pain for physical therapy management in palliative care: A clinical commentary
Senthil P Kumar, Sourov Saha
January-April 2011, 17(1):80-86
DOI
:10.4103/0973-1075.78458
PMID
:21633629
Pain relief is a major goal for palliative care in India so much that most palliative care interventions necessarily begin first with pain relief. Physical therapists play an important role in palliative care and they are regarded as highly proficient members of a multidisciplinary healthcare team towards management of chronic pain. Pain necessarily involves three different levels of classification-based upon pain symptoms, pain mechanisms and pain syndromes. Mechanism-based treatments are most likely to succeed compared to symptomatic treatments or diagnosis-based treatments. The objective of this clinical commentary is to update the physical therapists working in palliative care, on the mechanism-based classification of pain and its interpretation, with available therapeutic evidence for providing optimal patient care using physical therapy. The paper describes the evolution of mechanism-based classification of pain, the five mechanisms (central sensitization, peripheral neuropathic, nociceptive, sympathetically maintained pain and cognitive-affective) are explained with recent evidence for physical therapy treatments for each of the mechanisms.
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REVIEW ARTICLE
Palliative radiotherapy in head and neck cancers: Evidence based review
Kaustav Talapatra, Tejpal Gupta, Jai Prakash Agarwal, Sarbani Ghosh Laskar, Shyam Kishore Shrivastava, Ketayun Ardeshir Dinshaw
July-December 2006, 12(2):44-50
DOI
:10.4103/0973-1075.30244
Squamous cell carcinoma of head and neck (SCCHN) is one of the commonest cancers seen in India, constituting up to 25% of their overall cancer burden. Advanced SCCHN is a bad disease with a poor prognosis and patients usually die of uncontrolled loco-regional disease. Curative intent management of loco-regionally advanced SCCHN has become more evidence-based with active clinical research in the form of large prospective randomized controlled trials and meta-analyses. However, little has been written about palliative radiotherapy (PRT) in head and neck cancers. It is widely recognized that PRT provides effective palliation and improved quality-of-life in advanced incurable malignancies. It is in this context that this study proposes to review the existing literature on palliative radiotherapy in advanced incurable SCCHN to help formulate consensus guidelines and recommendations.
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Palliative care and spirituality
Aru Narayanasamy
July-December 2007, 13(2):32-41
DOI
:10.4103/0973-1075.38897
Critical junctures in patients' lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP) and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.
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ORIGINAL ARTICLES
Parental concerns in children requiring palliative care
Manjiri Dighe, Sunita Jadhav, Mary Ann Muckaden, Anuradha Sovani
January-June 2008, 14(1):16-22
DOI
:10.4103/0973-1075.41927
Children with advanced, life-limiting illness have unique needs which are different from those of adults. Pediatric palliative care is an under developed specialty.
Aims
: To identify concerns of parents of children with advanced, incurable cancers, and to elicit their attitudes toward revealing the diagnosis and prognosis to the sick child.
Method
: This study was carried out in a large tertiary cancer center in India. Parents of 20 pediatric palliative care patients attending the outpatient department were interviewed and emerging themes identified.
Results
: Parents showed varying degrees of anticipatory grief. Most families were financially strained. Most parents were reluctant to discuss disease and dying with the child. Siblings were rarely told or directly involved in care. There was resistance to allowing the palliative care team to communicate with the patient. Patients did not receive any formal support. Parents identified family and neighbors as the main sources of support.
Conclusions
: Parental attitudes hinder open communication with dying children in India. There is a need for research to explore the concerns of families of children with fatal illness. Specialist training is required for professionals working in pediatric palliative care to address this issue.
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The palliative care movement in India: Another freedom struggle or a silent revolution?
Cherian Koshy
January-June 2009, 15(1):10-13
DOI
:10.4103/0973-1075.53495
PMID
:20606849
The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a 'consolidation mode'. It is only a matter of time before the
'aam admi'
has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the 'Palliative Care Policy' by the Government of Kerala are commendable milestones. We are today having more of 'silver linings' and less of 'dark clouds'.
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Pattern of palliative care, pain management and referral trends in patients receiving radiotherapy at a tertiary cancer center
Kuldeep Sharma, Bidhu K Mohanti, Gaura K Rath, Sushma Bhatnagar
July-December 2009, 15(2):148-154
DOI
:10.4103/0973-1075.58462
PMID
:20668595
Background:
Pain is a common primary symptom of advanced cancer and metastatic disease, occurring in 50-75% of all patients. Although palliative care and pain management are essential components in oncology practice, studies show that these areas are often inadequately addressed.
Materials and Methods:
We randomly selected 152 patients receiving palliative radiotherapy (PRT) from October 2006 to August 2008, excluding metastatic bone lesions. Patients' records were studied retrospectively.
Results:
A median follow-up of 21 weeks was available for 119 males and 33 females with a median age of 55 years. Maximum (60%) patients were of head and neck cancers followed by esophagus (14%), lung (10%) and others. Dysphagia, growth/ulcer and pain were the chief indications for PRT. Pain was present in 93 (61%) cases out of which, 56 (60%) were referred to pain clinic. All except one consulted pain clinic with a median pain score of 8 (0-10 point scale). Fifty-three of these 56 patients (96%) received opioid-based treatment with adequate pain relief in 33% cases and loss of follow-up in 40% cases. Only five (3%) cases were referred to a hospice. Twenty-two (14%) cases were considered for radical treatment following excellent response to PRT.
Conclusion:
In this selective sample, the standard of analgesic treatment was found to be satisfactory. However, there is a lot of scope for improvement regarding referral to pain clinic and later to the hospice. Patients' follow-up needs to be improved along with future studies evaluating those patients who were considered for further RT till radical dose. Programs to change the patients' attitude towards palliative care, physicians' (residents') training to improve communication skills, and institutional policies may be promising strategies.
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Communication to pediatric cancer patients and their families: A cultural perspective
Tulika Seth
January-April 2010, 16(1):26-29
DOI
:10.4103/0973-1075.63131
PMID
:20859468
Background:
Communication is a key component of palliative care. The area of pediatric palliative care is emotionally distressing for families and healthcare providers. Inadequate communication can increase the stress and lead to mistrust or miscommunication.
Materials and Methods:
Reviewing the literature on communication between physicians and patients, we identified several barriers to communication such as paternalism in medicine, inadequate training in communication skills, knowledge of the grieving process, special issues related to care of children and cultural barriers. In order to fill the void in area of cultural communication, a study questionnaire was administered to consecutive families of children receiving chemotherapy at a large, north Indian referral hospital to elicit parental views on communication.
Results:
Most parents had a protective attitude and favored collusion, however, appreciated truthfulness in prognostication and counseling by physicians; though parents expressed dissatisfaction on timing and lack of prior information by counseling team.
Conclusion:
Training programs in communication skills should teach doctors how to elicit patients' preferences for information. Systematic training programs with feedback can decrease physicians stress and burnout. More research for understanding a culturally appropriate communication framework is needed.
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Anticoagulant and anti-thrombotic treatments in the management of hematological malignancies in a home care program
Andrea Tendas, Luca Cupelli, Laura Scaramucci, Massimiliano Palombi, Malgorzata Monika Trawinska, Marco Giovannini, Gregorio Antonio Brunetti, Claudio Cartoni, Francesco Bondanini, Paolo de Fabritiis, Pasquale Niscola
January-April 2011, 17(1):54-56
DOI
:10.4103/0973-1075.78450
PMID
:21633622
Aim:
Anticoagulants (AC) and anti-platelet (AP) agents are widely administered to patients with hematological malignancies (HM). However, HM patients may be at high risk of bleeding and hemorrhagic complications, because of different form of coagulopathies and several degrees of thrombocytopenia.
Materials and Methods:
A prospective evaluation of the use of anticoagulant and anti-thrombotic agents as well as of bleeding and thrombotic complications in a consecutive cohort of patients, which were followed during the first semester of 2010 by our home care service, was performed. In this regard, three pharmacological class of agents, such as oral anticoagulants (warfarin and acenocumarine), low molecular weight heparin (LMWH) and anti-platelet (AP) drugs were considered.
Results:
Out of 129 patients, 26 (20%) were treated with AC/AP drugs. Warfarin, acenocumarine, LMWH as well as AP were used in 7, 11 and 12 patients, respectively. Adverse events (bleeding) were observed in 3 patients (11.5%), 2 cases being on warfarin (replaced by LMWH) and 1 being AP (suspension without replacement); out of the 3 patients with bleeding, none presented thrombocytopenia.
Conclusions:
Despite the frequent findings of hemostatic disorders in a population of frail patients managed in a home care setting, our experience demonstrated that the use of AC/AP drugs has been very rarely responsible for significant complications.
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REVIEW ARTICLES
Cancer pain: A critical review of mechanism-based classification and physical therapy management in palliative care
Senthil P Kumar
May-August 2011, 17(2):116-126
DOI
:10.4103/0973-1075.84532
PMID
:21976851
Mechanism-based classification and physical therapy management of pain is essential to effectively manage painful symptoms in patients attending palliative care. The objective of this review is to provide a detailed review of mechanism-based classification and physical therapy management of patients with cancer pain. Cancer pain can be classified based upon pain symptoms, pain mechanisms and pain syndromes. Classification based upon mechanisms not only addresses the underlying pathophysiology but also provides us with an understanding behind patient's symptoms and treatment responses. Existing evidence suggests that the five mechanisms - central sensitization, peripheral sensitization, sympathetically maintained pain, nociceptive and cognitive-affective - operate in patients with cancer pain. Summary of studies showing evidence for physical therapy treatment methods for cancer pain follows with suggested therapeutic implications. Effective palliative physical therapy care using a mechanism-based classification model should be tailored to suit each patient's findings, using a biopsychosocial model of pain.
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