Measuring Outcomes: Physical and Quality of Life Issues

Thursday, 27 May 2010, 8:30 am to 9:15 am

Session: P1

• Patricia A. Ganz, MD, Professor of Health Services and Medicine, Department of Health Services, UCLA School of Public Health

Cancer and its treatment involved complex and toxic therapies. It has become increasingly important to evaluate treatments to understand whether or not certain therapies should be preferred for their more favorable outcomes. Advances in measurement science now allow us to obtain assessment of outcomes directly from patients and to learn from them about their experiences. While patients are often emotionally resilient, cancer therapies often lead to decrements in physical functioning and poorer quality of life. This presentation will discuss strategies to assess these outcomes and review the implications of these assessments.

Measuring Outcomes: Existential and Specific Psychosocial Issues

Thursday, 27 May 2010, 9:15 am to 10:00 am

Session: P2

• William Breitbart, MD, Chief, Psychiatry Service, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center
• Harvey Chochinov, OM MD, PhD, FRSC, Director, Manitoba Palliative Care Research Unit
• Pierre Gagnon, MD, FRCPC, Centre Hospitalier Universitaire de Québec, L’Hôtel-Dieu de Québec- Psycho-oncologie

NOTE: For the description of this session, each speaker provided his own description (below) as it pertains to what he will be presenting.

William Breitbart, MD: Title TBD

Purpose: Hopelessness has been increasingly recognized as a critical factor in end-of-life existential despair (e.g. desire for hastened death, suicidal ideation, loss of meaning). Current measures of hopelessness used, (e.g. the Beck Hopelessness Scale -BHS) are too long and contain inappropriate items for palliative care patients. This plenary describes the development of a new, brief, empirically validated measure of hopelessness for use in terminally ill patients.

Method: A mixed methods approach to construct exploration and validation was used. Expert clinicians (n=15) and terminally ill cancer patients (n=30) were interviewed to identify elements of hopelessness. Qualitative analysis was used to extract themes and develop questionnaire items. The initial 20-item questionnaire was administered to 400 terminally ill cancer patients drawn from a palliative care hospital and two cancer centers, using classical and item-response analyses to identify the optimal set of items for use in a subsequent validation study.  The final validation study consisted of a sample of 200 patients administered a series of measures to establish concurrent and predictive validity.

Harvey Chochinov, OM MD, PhD, FRSC: The Patient Dignity Inventory

Purpose: Quality palliative care depends on a deep understanding of distress facing patients nearing death. The aim of this presentation is to introduce attendees to a novel psychometric—the Patient Dignity Inventory (PDI)—designed to measure various sources of dignity-related distress among patients nearing the end of life.

Methods: Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the PDI. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care.

Results: Cronbach's coefficient alpha was 0.93; the test-retest reliability was r = 0.85. Factor analysis yielded a five-factor solution; including Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress.

Conclusions: The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.

Pierre Gagnon, MD, FRCPC: Measuring Existential Distress and Existential Quality of Life in Oncology

Purpose: The existential dimension is an integral part of human experience, including but not limited to spiritual and religious aspects, that attempts to respond to questioning about human existence and all that connect to one’s reason for being.  A life-threatening disease, such as cancer, amplifies existential concerns about death, loneliness, freedom, finitude, and the search for meaning. However, these dimensions remain difficult to measure, in research or clinical work, with instruments showing adequate content validity and sufficient responsiveness.

Methods: Based on previous and ongoing research projects on existential issues in oncology, some instruments will be reviewed, including the FACIT-SP and the existential well-being sub-scale of the McGill Quality of Life Questionnaire. Important questions to be addressed in existential instruments will be discussed as well as the limitations of the instruments.

Results: While there are interesting instruments available, some limitations for their use in research and clinical settings still remain. In addition to developing new instruments to measure global existential distress and quality of life, other instruments are also developed to examine specific aspects of these dimensions.

Conclusions: Existential distress and quality of life are important issues for cancer patients, for which instruments have been and are currently being developed, but remain a difficult dimension to measure.

Improving the Quality of Spiritual Care as a Dimension of Palliative Care

Thursday, 27 May 2010, 12:00 pm to 12:45 pm

Session: P3

• Betty Ferrell, PhD, MA, FAAN, FPCN, Professor, Nursing Research and Education, City of Hope

Studies have raised critical issues including the need for a commonly accepted definition of spirituality, the appropriate application of spiritual care in palliative care settings, clarification about who should deliver spiritual care, the role of healthcare providers in spiritual care, and ways to increase scientific rigor surrounding spirituality and spiritual care research and practice. These issues and the current variability in delivering spiritual care as a component of palliative care raised awareness of the need for guidelines for ensuring quality care. To this end, a Consensus Conference sponsored by the Archstone Foundation was held in February, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care.

The goal of the Consensus Conference was to identify points of agreement about spirituality as it applies to health care and to make recommendations to advance the delivery of quality spiritual care in palliative care. Five literature-based categories of spiritual care (spiritual assessment, models of care and care plans, interprofessional team training, quality improvement, and personal and professional development) were identified and provided the framework for the Consensus Conference. This presentation will review the final Consensus Report and recommendations.

Person-centered Cancer Care: Making the Vision a Reality

Thursday, 27 May 2010, 3:45 pm to 4:15 pm

Session: P4

• Margaret Fitch, RN, PhD, Head, Oncology Nursing and Supportive Care, Psychosocial & Behavioural Oncology, Toronto Sunnybrook Regional Cancer Centre

Cancer and its treatment have more than a physical impact. There are also emotional, social, psychological and spiritual consequences for the person diagnosed with the disease and their family members. The impact is felt from the moment an abnormality is evident, throughout the diagnostic, treatment and follow-up intervals. Information, support and communication are vital elements in helping the individual and family manage the challenges throughout the cancer journey.

Repeatedly patients and families have identified gaps in the delivery of their cancer care. Access to the range of services that would assist with the full array of needs remains a significant gap. Care that is person-centered–intentionally focused on starting with what is important to the person–remains elusive.

In Canada, efforts to move toward a person-centered cancer system have been undertaken. This presentation will highlight the work of the Cancer Journey Action Group, under the auspices of the Canadian Partnership Against Cancer, to provide leadership for rebalancing the cancer system. We are working toward a cancer system that is not simply tumor-centered to one that fully embraces person-centered approaches. Implementation of programs in screening for distress, patient navigation and survivorship care plans have been driving forces in moving toward person-centered care for cancer patients and survivors.

The Person-Centred Care Improvement and Established Communication Skills Training for Nurses and Oncologists in Switzerland

Thursday, 27 May 2010, 4:15 pm to 4:45 pm

Session: P5

• Dr. Patrice Guex, Professor in psychiatry and in psycho-social medicine at the Faculty of Medicine, Chief of the Department of Psychiatry, Lausanne University Hospital

While the importance of individualized and comprehensive care, taking into account the bio-psychosocial characteristics of the patient, is largely admitted, this remains a considerable challenge in daily clinical practice. Patient centredness requires psychological and temporal availability from the therapists and a capacity to develop or maintain relationship all along different stages of the disease. Communication with cancer patients remains a very difficult task within patient doctor or patient nurse encounters. It is specially challenging when informing about diagnosis and prognosis, about relapse or disease progression.  In this session we will refer to our partnership to the Swiss Cancer League programs which promote since several years so called Communication Skills Training (CST). Different studies have demonstrated a positive impact of CST, illustrating that communicational competence is not only a consequence of a personal and professional development, but can be modified by an intensive and interactive training having then a vey good impact on patient empowerment and capacities to decision sharing.

An Innovative Model of Community Cancer Support: From High Touch to High Tech

Friday, 28 May 2010, 8:30 am to 8:55 am

Session: P6

• Mitch Golant PhD, Senior Vice President, Research & Training, Cancer Support Community, Uniting The Wellness Community & Gilda's Club Worldwide

In 2009, The Wellness Community and Gilda’s Club merged to form the Cancer Support Community (CSC).  Headquartered in Washington, DC, the Cancer Support Community has 50 affiliates worldwide, 11 affiliates in development, nearly 100 satellite locations and a vibrant online community.  Offering support groups, counseling, education, and healthy lifestyle programs both in person and online, the CSC is now the largest employer of psychosocial oncology mental health professionals in the United States.

As the number of cancer survivors in the United States surpasses 12 million and 77 million baby boomers reach their prime, the demand for support services throughout the continuum of care is increasing. The Cancer Support Community is strengthening the link between medical and emotional health in order to meet the growing need.  Backed by evidence that the best cancer care includes emotional and social support, the organization is leading the charge to define and implement a new standard in community cancer care.  In 2007, the Institute of Medicine issued a ground-breaking report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,” which declares psychosocial support an essential part of cancer care.  The report goes on to state that community-based non-profit organizations are crucial to delivering that support and need to be better incorporated into the continuum of care.

This presentation will analyze the merger of The Wellness Community and Gilda’s Club and will also highlight the services provided by the Cancer Support Community, both in person and online – high touch and high tech.  The presentation will also advance the idea that in our current, complicated health care environment, now more than ever, those impacted by cancer need counseling and tools to assist with coping and treatment decision-making in order to give medicine the best chance to be successful.  Other highlights will include the current work underway at CSC’s Research & Training Institute and the organizations plans to launch a policy and advocacy agenda to advance the vision that all people impacted by cancer have access to emotional and social support.

Separate and Joined: A Unique Partnership Between Community- and Hospital-Based Cancer Support Services

Friday, 28 May 2010, 9:00 am to 9:30 am

Session: P7

• Suzanne O’Brien, MA, Program Director, Executive Director, Hope & Cope, Jewish General Hospital

Hope & Cope has a proud almost-thirty year history of providing quality, evidence-based programs to cancer patients and their families at the Jewish General in Montreal.  Our program is professionally led and volunteer based. (15 staff and almost 400 volunteers, most of whom have a personal experience with cancer – their own or a close loved one) and is funded totally by the community.  Recognizing the importance of encouraging positive lifestyle changes and behaviours for cancer patients and survivors, we spearheaded the establishment of the JGH Hope & Cope Wellness Centre, which opened its doors in 2007. Managed by Hope & Cope, this Centre provides a variety of complementary therapies and self-help programs that focus on living well during and after cancer treatment. Hope & Cope has become THE survivorship program of the Segal Cancer Centre at the Jewish General Hospital.  How did this happen?  What are the possibilities for formal affiliations and partnerships with community agencies and hospital-based cancer centres? How is our individuality sustained? Can we be separate and joined?

This paper discusses our model of peer support as a sister program to the Psychosocial Oncology program at the Cancer Centre and an integral  and celebrated component of the Cancer Centre. Through processes of collaboration, innovation, accountability, flexibility, responsiveness and shared research initiatives, it is a model which celebrates community input and responsibility and may increase the potential for outreach to underserved communities.

The New Reality of Community Nursing in Cancer Care

Friday, 28 May 2010, 9:30 am to 10:00 am

Session: P9

• Ursula M. Courtney, RGN, M MedSc, MBA

Changes in cancer nursing over the decades include working as part of a multidisciplinary team, better nursing education, better awareness of the needs and expectations of patients and significant others. In 2010 we also have the roles of specialization within cancer nursing ranging between survivorship and palliative care. The reality is that that cancer nursing has become the most holistic form of nursing today.

Encompassing the fields of cancer nursing is the use of evidence-based practice which informs us that the great need for social support in cancer care incorporates emotional, informational and instrumental support followed by appraisal. Complementary therapy in cancer care has been discussed by many authors and all agree that it enhances coping skills and can be appropriate at all stages of the disease trajectory. What is the role of the community nurse in the provision of complementary care? With the world in a free fall recession what is the new reality for community based cancer nursing?

As many health insurance companies are struggling to meet the needs of their clients, community based nurses are leading the way forward in the provision of therapeutic cancer care as well as the complementary supportive role they have always played – either as part of hospital-affiliated outreach services or the many new Wellness centres and other community based programmes which are emerging in Ireland and throughout out the world. The new decade brings with it, new challenges to community based cancer nurses in their role of empathic professional carers.

This paper aims to describe the new reality which has challenged nurses today and how they are meeting the challenges for themselves and their clients as they strive to continue to deliver the best possible holistic care available.

Hope, Meaning, and Coping

Friday, 28 May 2010, 12:00 pm to 12:45 pm

Session: P10

• Susan Folkman, PhD, Professor Emeritus, UCSF

Dealing with the profound stress of one’s own or a loved one’s serious illness is often   exhausting emotionally, physically, and spiritually.  Hope is central to these efforts.  There are central questions about how hope works, what its functions are intra-individually and inter-individually, and how it changes as illness processes unfold. These questions will be considered from the perspective of stress and coping theory, with particular attention given to meaning-focused coping and its role vis a vis the maintenance of hope.

Patient’s and Relatives’ Distress and Hope: Optimizing Communication in the Context of Uncertainty

Saturday, 29 May 2010, 8:30 am to 9:15 am

Session: P12

• Darius Razavi, MD, PhD, Psychosomatic and Psycho-Oncology Research Unit, Université Libre de Bruxelles

Types, levels, functions and outcomes of distress and hope are very diverse among cancer patients and their relatives: e.g. a 27 years old woman which reports hope despite a diagnostic of cancer with a poor prognosis, e.g. a 75 years man with a metastatic pancreatic cancer which is referred by his oncologist to a Psycho-oncology Support Service for “distress and hopelessness”, e.g. a 37 years old woman mother of two young children with an early breast cancer which is starting a “mind-body therapy” because “uncertainty is stressful and it will thus promote cancer growth and dissemination”. There are some conceptual frameworks designed to understand the diversities of distress and hope functions in the context of uncertainty. Firstly, it should be recalled that living is underlined by instinctual wishes such as a “wish to stay alive” and “doing everything to survive”. Secondly, It should be recalled that certain type of distress –such as sadness related to a reduced life expectancy– often downgrade the number of expectations about the future. Thirdly, it should be recalled that for patients and relatives maintaining hope is often a need and that they report an inner pressure to gain meaning despite the numerous threats linked to the uncertainty of cancer evolution. Fourthly, it should be recalled also that search for hope and meanings are often a marker of distress: individuals with high distress may seek hope and meanings to be relieved from their distress. In other words individuals with emotional disorders (adjustment, anxiety and affective disorders) are also likely to search hope and meanings in the context of uncertainty. Here above concepts and related communication issues will be discussed. Potential way of optimizing communication in the context of uncertainty will be presented.

The Spiritually Dynamic Nature of Hope: Keeping the Lamp Lighted

Saturday, 29 May 2010, 9:15 am to 10:00 am

Session: P13

• Mary Johnson, MA, Chaplain, Assistant Professor of Oncology, Mayo Clinic College of Medicine