New PC-HEART Site is Up and Running!

21 September 2008 - 08:52
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Welcome to the new PC-HEART web site! We’ve rebuilt the entire system using the latest technologies and have moved to a new hosting facility. We hope that you find the site to work better and more reliably.

You will need to reset your password to access the site. Please see this detailed explanation for more information about why and how to do this.

We apologize for the inconvenience this imposes, but long-term the PC-HEART site will greatly benefit from this transition.

Please email us with any problems. Thank you!

New PC-HEART Site Arrives This Sunday 21 September

18 September 2008 - 19:55
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This weekend we’re moving the PC-HEART web site to a new system and web hosting setting. Re-engineered from the ground up, our new technologies should provide some significant benefits and a better user interface. The move will cause two important points of disruption, however:

• There will be an interruption in access to the site for some number of hours beginning at 0800 PDT and lasting until the Internet has caught up to our new IP address.
  
• All users will need to redo their password.

Please review this full explanation of how this can be easily accomplished.

The new site is based on cutting-edge technologies (Ruby on Rails) that are much more robust and easily-maintained than our old system, which had grown rather long in the tooth after nearly seven years of service. Most of the enhancements aren’t visible to regular users, and in fact we’ve tried to keep much of the look&feel the same since people have told us they were used to it and didn’t want a lot of change. However, users with administrative roles at the site will find themselves considerably better empowered.

We’ve also moved to a new hosting setting that should provide more reliable and faster performance. We’ll closely monitor this to see if in fact this results.

We hope that you will bear with us during this transition. Please let us know how things go, particularly if you have any problems. We will make sure to help you through the change.

ISP infrastructure Revision Completed

12 May 2008 - 11:29
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Update: Our conversion to a new fiber-optic network is now complete. You should see some improvement in operations. We apologize again for any inconvenience during the change-over.

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!

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.”

Clinical Trials / Clinical Research Expo at Medinfo

12 August 2004 - 10:09
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The Epimetrics Group will showcase the PC-HEART web site and its collaborative tools for academic research networks at the Clinical Trials / Clinical Research Expo at medInfo 2004. This session is sponsored by the AMIA Clinical Trials Working Group and will include a wide range of developers and users:

The Expo is scheduled for Thursday 9 September from 7:30PM to 10:00PM in Yosemite A/B of the Hilton San Francisco.

Upgraded Server Now Functioning

01 August 2004 - 12:34
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After suffering a hard drive crash a week ago and hobbling along on a backup server in the interim, we’re now back in business with an upgraded server box. We think that all functions are running fine and that you should notice substantially improved performance. Please let us know if you encounter any problems, errors or other issues. Thanks!

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.