Annual Report. Patient, Family and Caregiver Programs

Transcription

1 Annual Report Patient, Family and Caregiver Programs

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3 The current standard of care for cancer patients is guided not only by the medical field, but includes social and psychological care, known as psychosocial oncology. The Gene Upshaw Memorial Tahoe Forest Cancer Center has focused on developing programs with research available from the National Comprehensive Cancer Network (NCCN), UC Davis Comprehensive Cancer Center, and Ohio State University Stress and Immunity Cancer Projects. Our mission is to support the patient and the caregiver by implementing a bio-behavioral therapeutic approach throughout cancer treatment and survivorship. The hope is to increase the patient s positive health behaviors, which in turn increase quality of life and life expectancy. According to the National Cancer Institute, about 41% of all Americans can expect to be diagnosed with cancer at some point in his or her life. Even with the advancements made in diagnosis and treatment, people with cancer face the risk of substantial and permanent physical impairment, disability, and inability to perform routine activities of daily living, as well as the psychological and social problems that can result from the diagnosis and its sequelae. Sadly, the remarkable advances in biomedical care for cancer have not been matched by achievements in providing high-quality care for the psychological and social effects of cancer. Numerous cancer survivors and their caregivers reported that cancer care providers did not understand their psychosocial needs, failed to recognize and adequately address depression and other symptoms of stress, were unaware of or did not refer them to available resources, and generally did not consider psychosocial support to be an integral part of quality cancer care. The NCCN developed psychosocial distress guidelines for oncology practices in The Tahoe Forest cancer center adopted this evidence-based guideline and put it into practice in Each patient receives a distress management screening form and is asked to complete it prior to consultation with the oncologist. This screening tool looks at five areas of possible concern: practical problems, such as housing and transport, family problems, emotional problems, spiritual/religious concerns, and physical problems. Patients also rate their overall level of distress from zero to ten, with zero being no distress and ten representing extreme distress. Those patients who score four or greater on the overall distress level and/or verbally indicate distress are contacted by the psychosocial staff. In 2013, of the 338 Tahoe Forest cancer center patients who received consultation from oncology physicians, 112 scored four or higher on their distress scales and all 112 were assessed and consulted by cancer center psychosocial staff. Failure to detect and treat elevated levels of distress in cancer patients jeopardizes the outcomes of cancer treatments, decreases patients' quality of life and increases health care costs (Zabora, 2001). Studies of national usage of psychosocial programs indicate that 17.8% of cancer patients have used these services in the past, 6.7% are currently using the services, and 20.4% planned to use psychosocial resources in the future (Carlson, 2004). Jimmie Holland, MD, Chair of Psychiatric Oncology at Memorial Sloan-Kettering Cancer Center suggests that only 10% of cancer patients who are assessed have significant psychosocial depression or anxiety are properly 2

4 referred (American Psychosocial Society). Comparatively, Gene Upshaw Memorial Tahoe Forest Cancer Center psychosocial staff assess all patients who are receiving treatment regardless of level of distress to ensure they are appropriately referred. There are some patients who do decline a psychosocial assessment, however, most patients request a follow up visit to ensure a full understanding of the programs available to them and an additional opportunity for psychological staff to attend to their needs. Last year, 138 patients received chemotherapy and/or radiation therapy at the cancer center. Psychosocial services were administered to 128 (93%) of these patients. The remaining patients reported not needing psychosocial services. Patients are given an overview of psychosocial support services known as The Patient, Family and Caregiver Programs. The generosity of the Tahoe-Truckee community has allowed the cancer center to provide theses programs and services at no cost for all cancer patients and their caregivers. Community members with a diagnosis of cancer who are not patients can also receive services dependent on program availability. The Patient, Family and Caregiver Programs currently include: Biofeedback: teaches self-regulation skills and trains the patient in relaxation, mindfulness and coherence. The program aims to relieve chronic pain, reduce anxiety, and increase relaxation. Precise instruments measure physiological activity such as heart function, breathing, muscle activity and skin temperature to accurately feed back the information on a computer screen. What we can see, we can change. Massage Therapy: helps with fatigue, anxiety and some treatment side effects such as nausea. In a calm setting, cancer patients can enjoy a peaceful, quiet reprieve; feel more connected with their body, mind and spirit; experience improved sleep; feel relaxed, comfortable, and have a greater sense of well being. Acupuncture: provides an additional holistic perspective for patients. Through the practice of both acupuncture and Traditional Chinese Medicine, this program offers a complementary approach to help manage the side effects of chemotherapy and radiation while alleviating some of the dis-ease and stress. Both physical and emotional distress that patients experience can be reduced. WeCARE! Cancer Peer Navigator Program : matches newly diagnosed breast cancer patients with cancer survivors who are trained in supportive techniques, problem-solving and providing coping strategies. This community-based program provides special support on an individual basis and is available to any newly diagnosed breast cancer patient, regardless of where the patient receives treatment. If desired, a peer navigator can accompany a patient to the 3

5 doctor s visit or treatments. The WeCARE! programs were developed by Marlene M. von Friederichs-Fitzwater, PhD, MPH, Director, UC Davis Comprehensive Cancer Center Outreach Research and Education Program "in response to the overwhelming need for effective psychosocial services for cancer patients. WeCARE! Cancer Caregiver Program : offers one-on-one education and support for caregivers specifically developed for husbands, wives, family members and friends who are taking care of their loved ones during any type of cancer treatment. This is a new program that focuses on providing emotional assistance, useful accurate medical information and links to appropriate community resources. A trained peer navigator is available to contact or meet as often as needed and can also accompany a caregiver to medical visits and answer questions. Music as Medicine: recommended by the American Music Therapy Association, music reduces stress and pain, improves mood and promotes healing. This program is part of a whole-body approach to wellness and is open to cancer patients and their caregivers. No musical experience is necessary. Yoga for Patients and Survivors: combines yoga postures, breathing techniques, and meditation. This gentle class helps students relieve stress, gain greater body awareness and strengthen from the inside out. Participants are encouraged to work at their own level to improve physical, emotional, and mental health throughout treatment and recovery. No experience is necessary and the class is appropriate for all levels. Deep Relaxation for Patients, Survivors & Caregivers: helps patients let go of tension in the body and mind while learning healthy visualization skills. The class includes easy, gentle stretching, followed by a fully guided meditation called Yoga Nidra (yogic sleep), where you take a journey through your body to experience deep relaxation and healing. There is no experience necessary and the class is appropriate for all levels. Exercise for Energy: incorporates strengthening, stretching, breathing, balance and cardiovascular exercise and is designed for current and recovering cancer patients. According to the National Institutes of Health and the American Cancer Society, cancer related fatigue (CRF) is the most common side effect of cancer and its treatments. Studies have shown % of cancer patients report CRF and 17-38% of survivors have reported CRF that persists more than 6 months after treatment (Mustain, 2009). Exercise has been shown to be a proven method to fight fatigue during and after cancer treatment. A recent study showed that exercising during treatment reduces CRF by 33.3%, and that exercising after treatment reduces it by 21.8% (Puetz, 2012). Scientific studies with cancer survivors have also shown benefits in heart and lung function, muscle strength, balance, fatigue, depression and quality of life, as well as reduced chance of recurrence. Exercise for Energy also offers social support. Additionally, the NCCN guidelines recommend physical activity/exercise as a behavioral intervention for reducing CRF. 4

6 All attendees participate in a medical screening prior to beginning exercise. This screening focuses on target heart rate and exertion zones as well as risk factors to enable safe exercise. Participants also take a Functional Assessment of Cancer Therapy-General. Once participants have regained their strength, many graduate into community programs and return to recreational pursuits. A few return after graduating, sometimes due to an illness or cancer recurrence. From Cancer to Health Program: formerly known as The Whole Body Wellness Program, this consists of five constructs taught individually or in group format: Stress and Emotional Adjustment, Social Adjustment, Body Component, Health Behaviors and Compliance, and is based on the latest scientific research by Professor Barbara Andersen, PhD, of Ohio State University. These groups meet weekly at the cancer center for 18 weeks during the first intensive phase. Patients continue to meet for the next 5 months to complete a maintenance phase of the program. The intervention components listed below are the most effective in reducing anxiety, reducing side effects from treatment and increasing immunity. Figure one shows the following components that are taught during the intensive phase and then reviewed during the maintenance phase: Figure (1) Construct Stress & Emotional Adjustment Social Adjustment Body Component Health Behaviors Compliance Intervention Components Rationale for the intervention Progressive muscle relaxation Problem solving and positive coping Social network identification Increasing contact and/or assistance with network members Assertive communication skills training Sexuality and menopausal change information Body acceptance and sexuality exercises Information onmaintaining vaginal health Communicating with the partner about sexual needs Diet: low fat/high fiber recommendations Exercise: walking program, using exercise for stress reduction. Negative behaviors: smoking cessation encouragement Disease and treatment information Communication skills training: interactions with providers Goal setting for cancer treatments and follow-ups 5

7 A recent study from Arlette Rogers, RN, MS, reported that the Gene Upshaw Memorial Tahoe Forest Cancer Center s From Cancer to Health Program enhanced patients understanding of treatment and eased the stress of post treatment life (2010). Figure two shows a statistically significant reduction in anxiety in patients who have participated in From Cancer to Health Program as shown in Dr. Andersen s study of 227 breast cancer patients (2004). The From Cancer to Health patients shown below in the green bar (114 patients), and those who did not participate in From Cancer to Health program are shown below in the red as assessment only (113 patients). Figure (2) Figure three shows a reduction in side effect symptoms as assessed by nurse practitioners who conducted a clinical interview with the 227 patients.those who participated in From Cancer to Health (intervention group) noted significantly fewer side effects. Figure (3) 6

8 Figure four shows increased immunity in people who participated in From Cancer to Health (green bar) compared to those who did not participate (red bar). Standard laboratory immune tests looked at the amount of T-cell division and replication. Those who participated in the program had significant increase in T-cell activity, indicating increased immunity. Figure (4) The cancer center s psychosocial team is trained and continues training in the From Cancer to Health program with Dr. Andersen and the Ohio State University (OSU) staff. Patients are provided the same information and interventions as in the original study from OSU. The cancer center has generalized this program to fit individuals who are unable to attend groups. Quality Assessment of Patient, Family and Caregiver Program Our recent self-study indicates patients feel very confident in coping with cancer-related stressors during and following chemotherapy and/or radiation treatments. Patients were asked to score the three questions seen below rating from one to five, with five suggesting very confident and one suggesting not confident. See Figure (5) on page 8. 7

9 Figure (5) Patient, Family Caregiver Program Self Study (N=26) (Patients rated from 1-5): Question Following 4 th Meeting with Psychosocial Staff Average Mode After meeting with cancer center psychosocial staff, do you feel more confident in your ability to cope with cancer related stressors during treatment? After meeting with cancer center psychosocial staff, did you feel more confident in your ability to cope with life stressors post treatment? When meeting with cancer center psychosocial staff, were your specific concerns addressed? To date, the most common score (mode) was four, suggesting that people who meet with our psychosocial staff three or more times are confident in dealing with cancer-related stressors. Measures for Quality of Life The cancer center also uses several measures for determining patient stress. The Quality of Life Questionnaire-30 measures issues such as physical ability, mood and side-effect symptoms. Using this questionnaire, we have found that the 23 patients who participated in individual therapy or From Cancer to Health programs in 2013 showed an increase or maintenance in quality of life throughout cancer treatment and post treatment. Additionally, 34 patients completed anxiety and depression assessments. These patients attended individual or group therapy, which included the From Cancer to Health program. Preliminary trends indicated a reduction in anxiety and depression according to the Burn s Anxiety Inventory and the Burn s Depression Checklist. The Tahoe Forest cancer center has joined with Ohio State University to better assess the effects of these important interventions. It is our aim to continue these programs to increase the patient s positive health behaviors, which in turn increase quality of life and life expectancy. We greatly appreciate the community s financial and moral support in allowing us to continue our work. 8

10 References Andersen, B.L., Farrar, W.B., Golden-Kreutz, D.M., Glaser, R., Emery, C.F., Crespin, T., Shapiro, C.L., & Carson, W.E.III. Psychological, Behavioral, and Immune Changes Following a Psychological Intervention, a Clinical Trial, Journal of Clinical Oncology.22 (17), (2004). Carlson, L E., Angen M., Cullum, J., Goodey, E., Koopmans, J., Lamon, L t., MacRae, J H., Martin, M., Pelletier, G., JRobinson, J S., Simpson, A., Speca, M., Tillotson, L., High Levels of Untreated Distress and Fatigue in Cancer Patients, British Journal of Cancer. 90 (12), (2004). American Psychosocial Society,Holland, J., Establishing a Psychosocial Program: Challenges and Strategies, PsychosocialProgram/player.html Mustain, K, Exercise and Cancer Related Fatigue, US Oncol, 5(2), (2009). Puetz, T, Differential Effects of Exercise on Cancer-Related Fatigue During and Following Treatment: A Metaanalysis, American Journal of Preventative Medicine, e1-e24 (2012). Rogers, A., Insight into a Rural Heterogeneous Cancer Support Program,Masters Student in Nursing Science and Health-Care Leadership at the Betty Irene Moore School of Nursing, University of California, Davis (2010). Zabora, J., Brintzenhofe Szoc, K., Curbow, B., Hooker, C., Piantadosi, S., The Prevalence of Psychological Distress by Cancer Site, Psychooncology.10:19 28 (2001a). 9