Quality of Life & Survivorship (QOL)

Joyce Grater, MSW, Coordinator, Family Caregiver Programs, UPMC Cancer Centers – Team Co-Chair
Evelyn Gonzalez, Partnership Program Manager, NCI Cancer Information Services – Team Co-Chair

Thank you to members of the PAC³ Quality of Life and Survivorship (QOL) Implementation Team who joined the conference call held on Thursday, November 13.

This call contained important information regarding the current and future direction of PAC³ implementation efforts and provided an opportunity for all team members to discuss next steps.

We followed the below agenda during the call:

Planning for the Future: PAC³ Implementation/Q&A (Kathy Stadler)
Review of Team Discussion from 10/21/08 Meeting (Joyce Grater, Evelyn Gonzalez)
Discuss Next Steps (All Team Members)
Identify Responsibilities/Leadership (facilitated by Joyce Grater, Evelyn Gonzalez)
Participate in PAC³ Community Interest Survey (Kathy Stadler)

Materials referenced during the call are below, as well as minutes from the call. If you need anything in addition to these materials or have any questions, please contact the PAC³ Coordinating Office at 412-623-0033 or pac3@upmc.edu

View Minutes from the November 13, 2008 QOL Team Conference Call
View the PowerPoint Slides

Institute of Medicine Report – Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
• For Health Care Providers
• For Patients

Previous QOL Team Meetings and Materials

October 21, 2008: Wyndham Garden Hotel Harrisburg/Hershey – View Minutes
June 12, 2008: The Radisson Penn Harris Hotel & Convention Center, Harrisburg, PA – View Minutes
April 18, 2008: Conference Call – View Minutes
February 29, 2008: Wyndham Garden Hotel Harrisburg/Hershey – View Minutes
January 18, 2008: Conference Call – View Minutes
November 16, 2007: Conference Call – View Minutes
October 19, 2007: Conference Call – View Minutes
October 3, 2007: The Radisson Penn Harris Hotel & Convention Center, Harrisburg, PA – View Minutes
August 24, 2007: Conference Call of the Pain Card Subcommittee – View Minutes
August 13, 2007: Conference Call of the Pain Card Subcommittee – View Minutes
August 3, 2007: Conference Call of the Pain Card Subcommittee – View Minutes
June 20, 2007: Conference Call of the Pain Card Subcommittee – View Minutes
May 25, 2007: Conference Call – View Minutes
April 13, 2007: Conference Call – View Minutes
March 29, 2007: Toftrees Resort & Conference Center, State College, PA – View Minutes
November 29, 2006: The Radisson Penn Harris Hotel & Convention Center, Harrisburg, PA – View Minutes
November 8, 2006: Conference Call – View Minutes
September 29, 2006: Penn Stater Conference Center & Hotel, State College, PA – View Minutes
May 18, 2006: Crowne Plaza Hotel, Harrisburg, PA – View Minutes
February 10, 2006: Wyndham Harrisburg-Hershey – View Minutes
September 9, 2005: Holiday Inn Hotel & Conference Center, Harrisburg, PA
- View Minutes from General Session
- View Minutes from QOL Team Meeting
May 13, 2005: Holiday Inn East, Harrisburg, PA – View Minutes

Health-related quality of life begins with diagnosis and continues through survivorship and issues related to end-of-life.

Health-related quality of life is multidimensional by nature and includes perceptions of persons with cancer about their well being, physical, spiritual, and psychological functioning. Quality of Life measures a variety of experiences, such as role functioning, pain, other distressing symptoms, emotional status, satisfaction with treatment and care, and concerns about the future. The concept of quality of dying, currently less fully developed in our health care systems, focuses on the experiences of living with a terminal illness. Quality of life and quality of dying topics include the concerns and experiences of persons with cancer, their families, their friends, and their lay caregivers.

QOL Team Members – For Your Information

Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians

Click Here to View the Guideline Summary

QOL Team Initiatives

Repeat survey of providers about use of QOL assessment for cancer patients and families in busy clinic settings.
Exploration of existing self-administered QOL instruments.
Review research literature on effects of QOL assessment on communication among providers and patients.

Quality of Life Team Pain Card Initiative

View the minutes from the November 8, 2006 conference call where these initiatives were discussed

Useful Websites

American Cancer Society Texas Pain Initiative – The ACS Texas Pain Initiative is an active coalition of organizations and individuals dedicated to: 1) Assuring that Texans receive state of the art pain treatment, and do not suffer needless pain; 2) Educating and empowering Texans about their right to quality pain management; 3) Providing advocacy on pain related issues for the citizens of Texas; and, 4) Encouraging and assisting health care professionals to provide optimum pain control for their patients, regardless of the cause of pain.
The Politics of Pain: Balancing Vigilance and Compassion – Report of the Texas Pain Summit 2006-2007 – "Uncontrolled pain compromises quality of life, decreases productivity, is a major cause of disability, and is a leading contributor to healthcare costs in the US." -- Larry C. Driver, MD, Chair, Texas Pain Summit In August 2006, seventy concerned professionals from across the state convened the first Texas Pain Summit. The Summit consisted of a concentrated day of education and consensus building and focused on 1) improving Texas pain care policy; 2) fostering dialogue among health professionals and regulatory and licensing agencies; and, 3) promoting a balanced regulatory system in which the prevention of prescription drug diversion and abuse is complementary to high quality pain treatment and management. Following the Summit, the Texas Pain Summit Workgroup, a collaborative effort of institutions, organizations, non-profits, clinical experts and others worked to create this first published report. This report is being shared with other state, tribe and territory CCC Coalitions as a model to consider in addressing pain management policy and practice issues.
UsTOO.com – UsTOO is an international grassroots organization that was started in 1990 by prostate cancer survivors to provide education, support groups, and advocacy for fellow survivors and their loved ones. The organization has 320 chapters across the globe, including 17 chapters in Pennsylvania. Click Here for a list of Pennsylvania UsTOO Chapters.

PAC³ will be updating this list as often as possible. Should there be any other informational resources that make strides in achieving PAC³'s priority goal to Provide all Pennsylvanians with access to high-quality, accurate, and current information based on individual and population factors for all aspects of cancer, from prevention to end-of-life care, please contact the PAC³ Coordinating Office to inquire about listing that resource on the PAC³ website.

"Together ... Making our Vision a Reality"