In this update
Reducing End of Life Symptoms with Touch (REST): Primary Outcomes Article Receives National Attention The REST Study findings have been published in the September 16, 2008 issue of The Annals of Internal Medicine. The study found that both massage and simple touch groups demonstrated immediate improvement in pain and mood. See full story below.
Study Results: Social workers' roles in pain management Findings from researchers at the University of Missouri regarding the role of social workers in pain management in hospice care illuminated. Thanks to all social workers who completed the survey!
Support by Telephone for Caregivers in Hospice: Building on the Success of a Pilot Project Working towards a nation-wide, randomized clinical trial of a telephone-based stress management and coping intervention to improve psychosocial functioning, quality of life and health outcomes among caregivers of patients enrolled in home-based hospice care...
We asked, you answered... Your feedback on study results & outcomes below.
A New Study Opportunity- Seeking Hospice Participation The National Cancer Institute has awarded Medical Decision Logic, Inc. (mdlogix) a contract to develop a commercially viable Web-based measurement and information software system designed to address pain and symptom management and the care of terminally ill patients.  Seeking hospices to become involved in evaluation and feedback. More info below...
Awards & Announcements
We are pleased to announce the K07 Academic Career Leadership award in the amount of $100,000 per year direct costs for 5 years to PoPCRN Director, Dr. Jean Kutner. This award is to develop a sustainable Program in Palliative Care Research at the University of Colorado Denver by building on the existing PoPCRN research network and assembling a critical mass of investigators to address the paucity of evidence guiding care for older adults with serious advanced illness. For further information, contact Jean Kutner, MD, MSPH.
Congratulations to David Bekelman, MD, MPH, who will be awarded a VA Career Development Award to further his research regarding palliative care needs of persons with advanced heart failure.
Kaiser Permanente-Colorado recently approved an expansion proposal that includes research support to study quality and utilization outcomes in implementing a new palliative care clinic. Expecting to serve approximately 400 patients at this interdisciplinary (MD, RN, SW) clinic during 2009-2010, the proposal will also further investigate outcomes from a 3-site "Advanced Illness Care Coordination" (AICC) intervention - a social work model that provides communication and care planning support/coordination for patients with progressive illness. Kaiser expects to publish results from a prior multi-site, randomized controlled trial of the AICC intervention in 2009.

Reducing End of Life Symptoms with Touch (REST) Study: Primary Outcomes Article Receives National Attention

After much anticipation, the REST Study findings have been published in the September 16, 2008 issue of The Annals of Internal Medicine (Link to article: Link to Annals video news release). The study, a 3-year randomized clinical trial measuring the effectiveness of moving touch and non-moving touch on symptoms in the terminally ill, found that both massage and simple touch groups demonstrated immediate improvement in pain and mood. Furthermore, the immediate improvements in pain and mood were larger in the group of people who received massage versus simple touch. No differences between the massage and simple touch groups occurred over time in sustained pain, worst pain, quality of life, symptom distress, or analgesic medication use. It was concluded that massage may have immediately beneficial effects on pain and mood among patients with advanced cancer. Given the lack of sustained effects and the observed improvements in both study groups, the potential benefits of attention and simple touch should also be considered in this patient population. 

This manuscript has received an enormous amount of publicity and has been selected for Faculty of 1000 Medicine because of the relatively large number of enrolled patients who are traditionally difficult to study, because this study addresses the use of CAM therapies in the advanced cancer population, because of the simple touch control group that accounted for attention, touch and intention, because the study confirmed safety of massage for people with metastatic cancer, and because the REST Study demonstrated the feasibility of a hospice-based research network.

Links to additional articles written about this manuscript are noted below. In addition to this publication, “Developing Control and Treatment Conditions in a Clinical Trial of Massage Therapy for Advanced Cancer” has been published in Journal of the Society of Integrative Oncology. Other manuscripts are in progress and will be listed under Publications on the PoPCRN website as they are published. A heartfelt thank you to the PoPCRN hospices who participated in the REST Study, the dedicated hospice teams, and most importantly, the REST Study participants! 

For questions or additional information, please contact Jean Kutner, MD, MSPH, REST Study Principal Investigator.

Links to article's additional publicity:

Just what the doctor ordered: A Massage; Time Magazine
Massage Offers Quick Pain Relief for Advanced Cancer Patients; Study CBC News (Canada)
Massage and Cancer Relief; WABC-TV News (NY, NY)
Massage Lowers Pain in Cancer Patients; WAPT-TV News 16
Massage May Ease Pain in Advanced Cancer; MedPage Today
Massage Eases Pain in Patients With Advanced Cancer, Study Says; Bloomberg
Massage Therapy Helps Those With Advanced Cancer; U.S. News & World Report
Study hails message for cancer patientns; Rocky Mountain News
Cancer Patients Feel Less Pain After Massage; FOXnews.com
Massage eases cancer blues; Health24
Massage Therapy Helps Those With Advanced Cancer; HealthScout
Massage Therapy Helps Those With Advanced Cancer; The Daily Sentinel
Massage Therapy Helps Those With Advanced Cancer; Forbes – Online

Survey Results: Hospice Social Workers and Pain Management

Researchers at the University of Missouri would like to thank those who participated in our exploratory study of the assessment and collaboration practices of hospice social workers related to pain management, especially caregiver concerns of pain.

A non-randomized survey of 87 US hospice social workers from the PoPCRN database and a small convenience sample of follow-up interviews indicate that social workers assess the components of pain but are not able to devote as much attention to it as they feel is needed.

While most report assessing patient and family needs, many do not use standardized assessment instruments. These data suggest that while social workers may understand their role in pain management they struggle to find the time and tools needed to help address caregiver concerns related to pain management. This study suggests that the development of standardized assessment instruments for hospice social workers for caregivers would be helpful and team training and discussion related to ways the social worker can best assist in pain management issues for caregivers is warranted. Research is needed on social work interventions with caregivers related to pain to establish an evidence base for hospice social work and cement a role identity for social work in pain management.

The study, sponsored by the National Cancer Institute, has been submitted for publication and will be presented in a poster at the Gerontological Society of Americas annual conference in Washington, DC later this month. Thanks to everyone participating in the dissemination and completion of the survey!! 

We'd love your feedback on these results. Please feel free to leave us your comments below.

Do you find these results surprising? Why? Why not?

How will results of this study affect your practice, if at all?

Please share any ideas for future studies in this area of research:

 

Support by Telephone for Caregivers in Hospice: Findings & Future Plans

SupportTECH: Support by Telephone for Caregivers in Hospice
Principal Investigator: Kristin Kilbourn, PhD, Psychology Department, UC Denver
Co-Investigator: Jean Kutner, MD, MSPH, Division of General Internal Medicine, University of Colorado School of Medicine

We are currently in the second year of a two year pilot study funded by the American Cancer Society that is testing the feasibility of the telephone-based counseling program in a sample (N=20) of caregivers of home-based hospice patients. Caregivers were recruited by our six participating hospice partners. We'd like to thank the following hospice sites for their efforts to help us meet our goals:

Hospice of Saint John, Lakewood, CO
Hospice of Montezuma, Cortez, CO
Capital Hospice, Falls Church, VA
Rice Hospice, Willmar, MN
San Diego Hospice, San Diego, CA
Hospice of Michigan, Detroit, MI

To date we have met our accrual goals and 12 of our caregivers have completed the telephone counseling program. The mean age of our caregivers is 58 and the majority of the caregivers are female. We have had excellent adherence to the biological measures with over 90% of the caregivers submitting saliva samples and 80% of those who qualified to participate in the immune measures substudy providing blood samples. We are currently in the process of analyzing our preliminary findings which includes both qualitative and quantitative data. In general we have found the intervention to be feasible and we have received excellent feedback from the caregivers regarding both the content and the process of the intervention.

After months of pilot work testing the telephone-based counseling program for caregivers in hospice, we're ready to begin preparing for a larger, randomized clinical trial.

This three-arm randomized clinical trial will: randomize caregivers of home hospice patients to usual care, an attention and time control, and a telephone-based counseling coping and stress management skill training intervention. Participating caregivers will be assessed at four time points: 1) time of enrollment, 2) completion of intervention, attention control or three months after enrollment, 3) six months after the second assessment, and 4) twelve months after the second assessment.

This caregiver support intervention will consist of 10 -12 telephone calls delivered on average of once a week over the course of several months. The content and approach will be based on the Transactional Model of Stress and Coping. Telephone sessions will occur throughout the caregiving experience and following the death of the patient. Each telephone session will address a different topics associated with coping and stress management. Topics will include: introduction to stress management, mind body connection, how thoughts impact emotions, communication, self care, coping skills training, social support, problem solving skills, grief and loss, moving forward, and wellness for life.

Caregivers will be recruited via partnering hospices which are located throughout the United States. We are currently looking for hospice sites interested in participating in this project. If you are interested in this project, have questions or would like more information, please contact Allison Costenaro (allison.costenaro@ucdenver.edu).

We hope to hear from you!

We asked, you answered!

In a previous e-update we asked you for your feedback on our study results. Here's what you had to say:

Response to feedback about the Reduing End-of-life Symptoms with Touch (REST) study:

(Do you find these results surprising? How will the results of this study affect your practice? Ideas for future studies in this area of research.)

- Not surprising. I think that healing touch is probably a more spiritual intervention that requires a receptive patient and probably an advanced spiritual healer. I don't think that you can go to a weeklong course and come back as an effective healing touch practitioner, whereas massage therapy can have some observable physical effects. Continue to use MT and continue to not promote healing touch

- not surprising to me, but I bet simple touch helped too. As a massage therapist and director of a program offering massage to cancer patients, these results help me to feel supported by the evidence that massage can help alleviate pain and distress. Would love to see more on the psychological mechanisms involved in massage

- No. We have just completed preliminary data collection for our research on MT and comfort and I believe that our data will show similar results. We have recently increased the hours of our massage therapist. I recently saw a proposed research study that is looking at comfort touch by volunteers for hospice patients.  

Response to feedback about the Fatigue survey study:

“Results weren't surprising, but I find it interesting that the symptom burden and the disruptive fatigue scores correlate with the presence of (possibly treatable) depression. May increase my use of antidepressants in patients who may live more than 50 days. I didn't see any table or graph or data about the results of the lab work that was obtained. Any chance of using the screening tools you used to choose another group of highly fatigued, depressed patients who can then be given methylphenidate or antidepressants?” 

New Study Opportunity: Seeking Hospice Participation

Medical Decision Logic, Inc. to develop web-based measurement software system to address pain and symptom management for terminally ill patients - seeking hospices to test software

“This project offers an excellent venue for hospices to become actively involved in developing a relevant, usable technology that has the potential to facilitate quality measurement and reporting, as well as research,” Jean S. Kutner, MD, MSPH, Director, PoPCRN

The National Cancer Institute has awarded Medical Decision Logic, Inc. (mdlogix) a contract to develop a web-based measurement and information software system designed to address pain and symptom management in the care of terminally ill patients. The system will be designed to improve decision making in the hospice and palliative care setting with its patient-reported outcome (PRO) assessment methods, helping to identify and define best practices.

“This is a significant opportunity to apply current scientific and technical knowledge to the needs in palliative care,” said Allen Y. Tien, MD, MHS, mdlogix Founder, President, and Research Director. Dr. Tien is the project’s Principal Investigator. “Our vision is to integrate this PRO information for use in clinical settings and in doing so, improve care and offer better business value to hospices across the country. At the same time, we want to support and accelerate palliative care research activities.”

In Phase I, an operational software prototype will be developed over nine months. The system will perform PRO data monitoring, collection, and reporting. Its development, testing, and feedback will initially involve a small number of sites from community hospices in the Baltimore-Washington DC area. Representatives from the Johns Hopkins University, Northwestern University, University of Colorado, and Population-based Palliative Care Research Network (PoPCRN) are serving as project consultants.

An important goal for Phase I is to gain comprehensive understanding of the research-integrated clinical care and business workflow needs of hospices in order to guide the preparation of the Phase II funding application for submission in summer 2009. “We will be seeking hospice administrative and clinical staff who are interested in previewing and commenting on the prototype in early 2009,”said Dr. Tien. In Phase II, mdlogix will complete the software system for use by clinicians, patients, and hospice administrators through an expanded network of sites.

PoPCRN members who are interested in providing feedback on the prototype in Phase I should contact Dr. Tien at 443-278-8800 or allen@mdlogix.com. To learn more about mdlogix, visit www.mdlogix.com.

Publication Announcements

Corbin, L, Mellis BK, Beaty B, Kutner JS. The Use of Complementary and Alternative Medicine Therapies by Patients with Advanced Cancer and Pain in a Hospice Setting: A Multi-centered, Descriptive Study. J Palliat Med. In press. 2008

Kutner, JS, Kilbourn KK. Bereavement. Primary Care: Clinics in Office Practice. In press. 2008.

Wilson BA, Kutner JS, Levy C. Do Health Insurance Plans Perpetuate Ambiguity About Palliative Care? Journal of Palliative Medicine. 2008. In press (expected publication date November 2008).

Kutner, JS, Smith MC, Corbin L, Hemphill L, Benton K, Mellis BK, Beaty B, Felton S, Yamashita TE, Bryant LL, Fairclough DL. Massage Therapy versus Simple Touch to Improve Pain and Mood in Patients with Advanced Cancer: A Randomized Trial. Annals of Internal Medicine. 2008. 149(6): 369-379.