Publication of the rationale and design of the PAIN-HF study

28 May 2008 - 22:11
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Here’s the PubMed citation for the first publication about the PAIN-HF study:

J Card Fail. 2008 May;14(4):276-82.

Investigating pain in heart failure patients: rationale and design of the Pain
Assessment, Incidence & Nature in Heart Failure (PAIN-HF) study.

Goodlin SJ, Wingate S, Pressler SJ, Teerlink JR, Storey CP.

Patient-centered Education and Research, Salt Lake City, Utah, USA.

BACKGROUND: Heart failure is a major cause of morbidity and mortality and is
increasing in prevalence. Treatments for heart failure permit a growing number of
persons to live with the illness for many years. The burden of symptoms in
persons with advanced heart failure is high. Fatigue, limited exertion, dyspnea,
and depression are commonly associated with heart failure, but pain is common as
well. METHODS AND RESULTS: Although it is known that underlying comorbidities
modify the response to and experience of pain, the interaction between pain and
the clinical syndrome of heart failure has not been studied to date. The Pain
Assessment, Incidence & Nature in Heart Failure (PAIN-HF) study will evaluate
pain in patients with advanced heart failure. Specifically, PAIN-HF will examine
the anatomical location of pain, prevalence of pain, its association with aspects
of patients’ heart failure and comorbid conditions, and its relation to
interventions and medications to treat pain. CONCLUSIONS: This study to identify
the nature, incidence, and character of pain is an important step in relieving
distress and discomfort in persons with heart failure.

PMID: 18474339

Support PC-HEART Through an Online Donation!

29 December 2007 - 07:56
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PC-HEART is a nonprofit organization that needs financial support to continue its important activities. Any amount of support will be helpful. You can donate online here. Please help us with our work! You can also contact Sarah Goodlin, Director of PC-HEART, for more information or if you are interested in helping us accomplish our work in any way.

Ethical Issues in Care for Persons with Advanced Heart Failure

17 March 2006 - 14:20
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PC-HEART is pleased to sponsor the upcoming conference Ethical Issues in Care for Persons with Advanced Heart Failure April 17-8, 2006, at the St. Regis Hotel in Washington DC. See this article for detailed information and registration form.

The conference aims to catalyze action by health care leaders and set an agenda to address:

We hope that you join us in this important event!

Conference: Ethical Issues in Care for Persons with Advanced Heart Failure

16 March 2006 - 17:15
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April 17, 2006 – April 18, 2006 Washington DC

The conference aims to catalyze action by health care leaders and set an agenda to address:

* the distribution of treatments, devices and technologies and the selection of patients to receive them

* the distribution and range of palliative care provided to patients with advanced heart failure

* communication and decision-making with patients about heart failure course and prognosis

* the distribution of care and services to patients of differing age, race and social and reimbursement structure

* the health care financing issues that affect heart failure care

Audience: The conference will be of interest to health care administrators, health care policy-makers, clinicians and ethicists

Registration Fees:
Charge per individual: $170 (includes continental breakfast both days, lunch on the 17th)
Corporate support (for 1-4 persons) $1000

Conference Location:
St. Regis Hotel, 923 16th and K Streets, N.W., Washington, DC. 20006

Hotel Reservations:
A block of rooms has been reserved at the St. Regis Hotel at a rate of $189 per night. Reservations can be made by contacting the hotel directly at 1-888-627-8087 by identifying the conference by the name “Ethical Issues in Heart Failure.”

For questions regarding registration, please e-mail Reg_Services@connect2amc.com or call 847-375-3685.

We are grateful for partial funding from Medtronic Inc, Scios, Abbott Laboratories, The Byrne Foundation

Call for participants in PAIN-HF Study

29 December 2005 - 16:07
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The PAIN-HF Study is now recruiting clinical sites to participate in the study.
Details of the Call for participating sites are available by contacting Sarah Goodlin, or Sue Wingate, or via the PC-HEART investigator’s group (you must be a member of this group first).

PAIN-HF study

28 November 2005 - 09:44
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Heart failure is known to cause shortness of breath and fatigue, yet at least half of persons with heart failure also report the presence of pain. The cause of pain for these persons is not clear. A new study “PAIN-HF” (Pain Assessment, Incidence & Nature in Heart Failure) to be conducted through the PC-HEART collaborative will identify the prevalence of pain, its location, severity and impact on activities and the possible causes of pain in persons living with heart failure.

The study will also try to understand relationships between other problems and pain, as well as what treatments are given to reduce pain.
“This is an important step in helping health care providers better manage pain and related problems in persons with heart failure,” says the study’s lead investigator, Dr. Sarah Goodlin. “We know that drugs commonly used to treat arthritis and other causes of pain are contraindicated in heart failure patients because they impact kidney function, worsen heart failure and result in hospitalization. We don’t know whether patients are provided other treatment, or which treatments are most effective for their pain.”

Other possible causes of pain have not been explored in persons with heart failure. These include the possibility that pain results from swelling in the legs and other parts of the body, or that pain is perceived as a component of other symptoms associated with heart failure, such as shortness of breath, fatigue, depression or anxiety.

The primary goal of PAIN-HF is to identify the prevalence of pain, its nature and location and relation to other symptom distress in persons with advanced heart failure. Information will be gathered through examinations and surveys of patients with advanced heart failure in community outpatient clinics and hospice care sites who are members of PC-HEART.

PAIN-HF Principal investigator is Goodlin; Dr. Sue Wingate is co-investigator. Steering Committee members are Susan J. Bennett, DNS, RN, Professor, Indiana University School of Nursing, Porter Storey MD, Executive Vice President American Academy of Hospice and Palliative Medicine and John Teerlink MD, Assoc. Professor, University of California, San Francisco School of Medicine and the San Francisco Veterans Administration Medical Center.

The study is funded by The Mayday Fund, established in 1992 to further Shirley Steinman Katzenbach’s commitment to social and medical causes. The Mayday Trustees set a goal of closing the gap between a wealth of information about the treatment of pain and the implementation of this knowledge. Over the last ten years, Mayday has supported many different projects, among them, surveys of public attitudes to pain and its treatment, role model and documentation programs, assistance to public and professional advocacy groups, and clinical and academic research. This project addresses the Trustees wish to support projects that result in clinical interventions to reduce the toll of physical pain. Christina Spellman, executive director of the Mayday Fund affirms. “All at Mayday are excited about the potential of this project to document the extent and prevalence of undertreated pain as a first step towards designing a better system of care for those with heart failure who are suffering.”

PC-HEART Publishes Consensus Statement On Palliative and Supportive Care in Advanced Heart Failure

10 June 2004 - 09:57
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The PC-HEART team has published a consensus statement on standards for care in advanced heart failure in the Journal of Cardiac Failure, Volume 10, No. 3, 2004. The article can be accessed via ScienceDirect’s subscription-based service. We provide the abstract here.

Background: A consensus conference was convened to define the current state and important gaps in knowledge and needed research on “Palliative and Supportive Care in Advanced Heart Failure.”

Evidence: Evidence was drawn from expert opinion and from extensive review of the medical literature, evidence-based guidelines, and reviews.

Conclusions: The conference identified gaps in current knowledge, practice, and research relating to prognostication, symptom management, and supportive care for advanced heart failure (HF). Specific conclusions include:

1. Although supportive care should be integrated throughout treatment of patients
   with advanced HF, data are needed to understand how to best decrease physical and psychosocial burdens of advanced HF and to meet patient and family needs.
2. Prognostication in advanced HF is difficult and
   data are needed to understand which patients will benefit from which interventions and how best to counsel patients with advanced HF.
3. Research is needed to identify which interventions improve quality of life
   and best achieve the outcomes desired by patients and family members.
4. Care should be coordinated between sites of care, and barriers to evidence-based practice must be addressed programmatically.
5. More research is needed to identify the content and technique of communicating prognosis and treatment options with patients with advanced HF; physicians caring for patients with advanced HF must develop skills to better integrate the patient’s preferences into the goals of care.

New Hospice-PC Clinicians Group

22 January 2004 - 13:55
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We’ve now opened a new collaborative area in our web site for clinicians working in hospice and palliative-care settings. This is where you can discuss important issues, get involved in projects, and help shape our understandings of what constitutes optimal clinical care in advanced heart failure from the perspective of real experience.

To join this group, you need to register at our site (which is easy and free; see this FAQ for more information). Then you can request to join the group. We may email you about who you are, what you do, and what your interests are to make sure that the group’s objectives meet yours. If so, we’ll add you to the group and then you can join in the activities there.

We’re excited about the potential for breaking through to new ideas and practical insights in this group!

Instructions for Getting Involved at PC-HEART

05 January 2004 - 15:21
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We’d like to welcome all our current colleagues to our PC-HEART web site! We also welcome all you potential new members! To make it easier for you to use our site, we’ve posted some information you should consult on the Site Registration FAQ and the Joining Us page.

Please read these through, email us with questions or problems, and get involved! Welcome!