Appendix C
Recommendations from Prior Selected Reports

TABLE C-1 Recommendations Addressing Psychosocial Services

Report

Recommendations

Assure Provision of Psychosocial Services

Improving the Quality of Health Care for Mental and Substance-Use Conditions (IOM, 2006)

Overarching Recommendation 1 Health care for general, mental, and substance-use problems and illnesses must be delivered with an understanding of the inherent interactions between the mind/brain and the rest of the body.

Ensuring Quality Cancer Care (IOM, 1999)

Recommendation 4 Ensure the following elements of quality care for each individual with cancer: …

  • an agreed upon care plan that outlines goals of care;

  • access to the full complement of resources necessary to implement the care plan; …

  • a mechanism to coordinate services; and

  • psychosocial support services and compassionate care.

NCCN Distress Management Clinical Practice Guidelines, (NCCN, 2006)

  • Distress should be recognized, monitored, documented, and treated promptly at all stages of disease.

  • Patients, families, and treatment teams should be informed that management of distress is an integral part of total medical care and provided appropriate information about psychosocial services in the treatment center and the community.



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Appendix C Recommendations from Prior Selected Reports TABLE C-1 Recommendations Addressing Psychosocial Services Report Recommendations Assure Provision of Psychosocial Services Improving the Overarching Recommendation 1 Health care for general, mental, Quality of Health and substance-use problems and illnesses must be delivered with an Care for Mental understanding of the inherent interactions between the mind/brain and and Substance- the rest of the body. Use Conditions (IOM, 2006) Ensuring Quality Recommendation  Ensure the following elements of quality care for Cancer Care each individual with cancer: . . . (IOM, 1999) • an agreed upon care plan that outlines goals of care; • access to the full complement of resources necessary to implement the care plan; . . . • a mechanism to coordinate services; and • psychosocial support services and compassionate care. NCCN Distress • Distress should be recognized, monitored, documented, and treated Management promptly at all stages of disease. Clinical Practice • Patients, families, and treatment teams should be informed that Guidelines, management of distress is an integral part of total medical care and (NCCN, 2006) provided appropriate information about psychosocial services in the treatment center and the community. continued 

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0 CANCER CARE FOR THE WHOLE PATIENT TABLE C-1 Continued Report Recommendations Clinical Practice Emotional and Social Support Guidelines for Guideline: The extent to which a person with cancer has support and the Psychosocial feels supported has been identified as a major factor in their adjustment Care of Adults to the disease. It is essential to check the extent of support available with Cancer to the patient, to recommend additional support as required and to (National Breast provide information about where this is available. Cancer Centre Gender and psychosocial support and National Guideline: Clinicians and the treatment team need to consider that the Cancer Control psychosocial needs of men and women may vary both in extent and Initiative, 2003) how they are expressed. Successful strategies for meeting psychosocial support needs may therefore differ for men and women. Where the delivery method is inappropriate or insensitive, men may simply not participate or not gain a benefit. Achieving Recommendation 1.1 Advance and implement a national campaign to the Promise: reduce the stigma of seeking care and a national strategy for suicide Transforming prevention. Mental Health Recommendation 1.2 Address mental health with the same urgency as Care in America physical health. (New Freedom Recommendation 2.3 Align relevant federal programs to improve access Commission on and accountability for mental health services. Mental Health, Recommendation 2. Create a Comprehensive State Mental Health 2003) Plan. Recommendation 3.1 Improve access to quality care that is culturally competent. Recommendation 3.2 Improve access to quality care in rural and geographically remote areas. Recommendation .1 Promote the mental health of young children. Meeting Breast cancer care clinicians, such as oncologists and other medical Psychosocial professionals, responsible for the care of women with breast cancer Needs of Women should incorporate planning for psychosocial management as an integral with Breast part of treatment. They should routinely assess and address psychosocial Cancer (IOM distress as a part of total medical care. and NRC, 200) From Cancer Recommendation 6 Congress should support the Centers for Disease Patient to Cancer Control and Prevention (CDC), other collaborating institutions, and the Survivor: Lost in states in developing comprehensive cancer control plans that include Transition (IOM consideration of survivorship care, and promoting the implementation, and NRC, 2006) evaluation, and refinement of existing state cancer control plans. Screening NCCN Distress • All patients should be screened for distress at their initial visit, at Management appropriate intervals, and as clinically indicated especially with Clinical Practice changes in disease status (i.e., remission, recurrence, progression). Guidelines, • Screening should identify the level and nature of the distress. (NCCN, 2006) • Conduct multi-center trials that explore brief screening instruments. . . .

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1 APPENDIX C TABLE C-1 Continued Report Recommendations Clinical Practice Clinic-based protocols should be developed to ensure that all patients Guidelines for are screened for clinically significant anxiety and depression. the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Achieving Recommendation .3 Screen for co-occurring mental and substance-use the Promise: disorders and link with integrated treatment strategies. Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Improving the Recommendation 5-1 To make collaboration and coordination of Quality of Health patients’ mental and substance-use health care services the norm, Care for Mental providers of the services should establish clinically effective linkages and Substance- within their own organizations and between providers of mental health Use Conditions and substance-use treatment. The necessary communications and (IOM, 2006) interactions should take place with the patient’s knowledge and consent and be fostered by: • Routine sharing of information on patients’ problems and pharmacologic and nonpharmacologic treatments among providers of M/SU treatment. • Valid, age-appropriate screening of patients for comorbid mental, substance-use, and general medical problems in these clinical settings and reliable monitoring of their progress. Patient-Centered Care Achieving Recommendation 2.1 Develop an individualized plan of care for every the Promise: adult with a serious mental illness and child with a serious emotional Transforming disturbance. Mental Health Care in America (New Freedom Commission on Mental Health, 2003) continued

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2 CANCER CARE FOR THE WHOLE PATIENT TABLE C-1 Continued Report Recommendations Quality Improvement Improving Recommendation 6: Best available practice guidelines should dictate Palliative Care the standards of care for both physical and psychosocial symptoms. for Cancer (IOM Care systems, payers, and standard-setting and accreditation bodies and NRC, 2001) should strongly encourage their expedited development, validation, and use. Professional societies, particularly the American Society of Clinical Oncology, the Oncology Nursing Society, and the Society for Social Work Oncology, should encourage their members to facilitate the development and testing of guidelines and their eventual implementation, and should provide leadership and training for nonspecialists, who provide most of the care for cancer patients. NCCN Distress • Distress should be assessed and managed according to clinical practice Management guidelines. Clinical Practice • Multidisciplinary institutional committees should be formed to Guidelines implement standards for distress management. (NCCN, 2006) • Clinical health outcomes measurement should include assessment of the psychosocial domain (e.g., quality of life and patient and family satisfaction). • Quality of distress management should be included in institutional continuous quality improvement projects. Meeting Providers of cancer care should meet the standards of psychosocial care Psychosocial developed by the American College of Surgeon’s Commission on Cancer Needs of Women and follow the National Comprehensive Cancer Center Network’s with Breast (NCCN) Clinical Practice Guidelines for the Management of Distress. Cancer (IOM and NRC, 200) From Cancer Recommendation  Quality of survivorship care measures should be Patient to Cancer developed through public/private partnerships and quality assurance Survivor: Lost in programs implemented by health systems to monitor and improve the Transition (IOM care that all survivors receive. and NRC, 2006) Continuity of Care Living Beyond Recommendation 1a Upon discharge from cancer treatment, including Cancer: Finding treatment of recurrences, every patient should be given a record of all a New Balance care received and important disease characteristics, this should include, (President’s at a minimum: . . . Cancer Panel, • Psychosocial . . . services provided. 200) • Full contact information on treating institutions and key individual providers. Recommendation 1b Upon discharge from cancer treatment, every patient should receive a follow-up care plan incorporating available evidence–based standards of care. This should include, at a minimum: • Information on possible future need for psychosocial support. • Referrals to specific follow-up care providers, support groups. . . . • A listing of cancer-related resources and information (Internet- based sources and telephone listings for major cancer support organizations).

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 APPENDIX C TABLE C-1 Continued Report Recommendations Clinical Practice Clinic-based protocols should be developed to ensure that: Guidelines for • All patients are able to identify a key health professional responsible the Psychosocial for continuity of care. Care of Adults • Referral pathways for liaison psychiatry, psychologists, support with Cancer groups, and relevant allied health professionals are established and (National Breast known to the team. Cancer Centre [NBCC] and National Cancer Control Initiative [NCCI], 2003) From Cancer Recommendation 2 Patients completing primary treatment should Patient to Cancer be provided with a comprehensive care summary and follow-up plan Survivor: Lost in that is clearly and effectively explained. This “Survivorship Care Transition (IOM Plan” should be written by the principal providers(s) who coordinated and NRC, 2006) oncology treatment. This service should be reimbursed by third party payors of health care. Such a care plan would summarize critical information needed for the survivor’s long term care, including . . . information on the availability of psychosocial services in the community and on legal protections regarding employment and access to health insurance. continued

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 CANCER CARE FOR THE WHOLE PATIENT TABLE C-1 Continued Report Recommendations Improving the Recommendation 5-2 To facilitate the delivery of coordinated care by Quality of Health primary care, mental health, and substance-use treatment providers, Care for Mental government agencies, purchasers, health plans, and accreditation and Substance- organizations should implement policies and incentives to continually Use Conditions increase collaboration among these providers to achieve evidence- (IOM, 2006) based screening and care of their patients with general, mental, and/or substance-use health conditions. The following specific measures should be undertaken to carry out this recommendation: • Primary care and specialty M/SU health care providers should transition along a continuum of evidence-based coordination models from (1) formal agreements among mental, substance-use, and primary health care providers; to (2) case management of mental, substance-use, and primary health care; to (3) collocation of mental, substance-use, and primary health care services; and then to (4) delivery of mental, substance-use, and primary health care through clinically integrated practices of primary and M/SU care providers. Organizations should adopt models to which they can most easily transition from their current structure, that best meet the needs of their patient populations, and that ensure accountability. • DHHS should fund demonstration programs to offer incentives for the transition of multiple primary care and M/SU practices along this continuum of coordination models. • Purchasers should modify policies and practices that preclude paying for evidence-based screening, treatment, and coordination of M/SU care and require (with patients’ knowledge and consent) all health care organizations with which they contract to ensure appropriate sharing of clinical information essential for coordination of care with other providers treating their patients. • Organizations that accredit mental, substance-use, or primary health care organizations should use accrediting practices that assess, for all providers, the use of evidence-based approaches to coordinating mental, substance-use, and primary health care. • Federal and state governments should revise laws, regulations, and administrative practices that create inappropriate barriers to the communication of information between providers of health care for mental and substance-use conditions and between those providers and providers of general care. Recommendation 5-3 To ensure the health of persons for whom they are responsible, M/SU providers should: • Coordinate their services with those of other human-services and education agencies, such as schools, housing and vocational rehabilitation agencies, and providers of services for older adults. • Establish referral arrangements for needed services.

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 APPENDIX C TABLE C-1 Continued Report Recommendations Patient Education and Illness Self-Management Living Beyond Recommendation 2 Procedures should be established within diverse Cancer: Finding patient care settings to better inform patients/survivors and their a New Balance caregivers about available legal and regulatory protections and resources (President’s [e.g., pertaining to employment and insurance.]. Cancer Panel, Recommendation 5a All survivors should be counseled about common 200) psychosocial effects of cancer and cancer treatment and provided specific referrals to available support groups and services. Clinical Practice Clinic-based protocols should be developed to ensure the following Guidelines for goals: the Psychosocial • Copies of evidence-based information about treatment options are Care of Adults provided to all patients. with Cancer • Listings of other information resources which may be of value are (National Breast provided to all patients. Cancer Centre and National Cancer Control Initiative, 2003) Achieving Recommendation 2.5 Protect and enhance the rights of people with the Promise: mental illness. Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Meeting The National Cancer Institute (NCI), the American Cancer Society Psychosocial (ACS), and professional organizations (e.g., American Society of Needs of Women Clinical Oncology, American College of Surgeons, American Association with Breast of Colleges of Nursing, American Psychosocial Oncology Society, Cancer (IOM American Society of Social Work, American Society for Therapeutic and NRC, 200) Radiology and Oncology, Oncology Nursing Society) need to partner with advocacy groups (e.g., National Breast Cancer Coalition, National Alliance of Breast Cancer Organizations, Wellness Community, National Coalition Cancer Survivorship [NCCS]) to focus attention on psychosocial needs of patients and resources that provide psychosocial services in local communities and nationally. continued

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 CANCER CARE FOR THE WHOLE PATIENT TABLE C-1 Continued Report Recommendations Public Education Living Beyond Recommendation a National public education efforts sponsored by Cancer: Finding coalitions of public and private cancer information and professional a New Balance organizations and the media (e.g., film, television, print, and broadcast (President’s news) should be undertaken to: Cancer Panel, • Raise awareness of survivor experiences and capabilities, and of 200) the continuing growth of the cancer survivor population. These efforts should seek to enhance understanding of the post-treatment experiences of cancer survivors of various ages and their loved ones and the need for life-long follow-up care. Recommendation 5c Providers should include psychosocial services routinely as part of comprehensive cancer care treatment and follow-up care and should be knowledgeable about local resources for such care for patients/survivors, caregivers, and family members. In particular: • The transition from active treatment to social reintegration is crucial and should receive specific attention in survivor’s care. • Primary and other health care providers should monitor caregivers, children, and siblings of survivors for signs of psychological distress both during the survivor’s treatment and in the post-treatment period. Care Coordination NCCN Distress Licensed mental health professionals and certified pastoral caregivers Management experienced in psychosocial aspects of cancer should be readily available Clinical Practice as staff members or by referral. Guidelines (NCCN, 2006) Reimbursement Living Beyond Recommendation 7b Adequate reimbursement for prosthetics must be Cancer: Finding provided and it must be recognized that: a New Balance • Many prostheses must be replaced periodically. (President’s • Access to prostheses is an integral part of psychosocial care for Cancer Panel, cancer. 200) Recommendation 7c [Health Insurance] Coverage should be routinely provided for psychosocial services for which there is evidence of benefit both during treatment and post-treatment as needed. NCCN Distress Medical care contracts should include reimbursement for services Management provided by mental health professionals. Clinical Practice Guidelines (NCCN, 2006)

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 APPENDIX C TABLE C-1 Continued Report Recommendations From Cancer Recommendation 2 Patients completing primary treatment should Patient to Cancer be provided with a comprehensive care summary and follow-up plan Survivor: Lost in that is clearly and effectively explained. This “Survivorship Care Transition (IOM Plan” should be written by the principal providers(s) who coordinated and NRC, 2006) oncology treatment. This service should be reimbursed by third party payors of health care. Recommendation 9 Federal and state policy makers should act to ensure that all cancer survivors have access to adequate and affordable health insurance. Insurers and payors of health care should recognize survivorship care as an essential part of cancer care and design benefits, payment policies, and reimbursement mechanisms to facilitate coverage for evidence-based aspects of care. Support of Informal Caregivers Living Beyond Recommendation 5b A caregiver plan should be developed and Cancer: Finding reviewed with a survivor’s caregiver(s) at the outset of cancer treatment. a New Balance It should include, at a minimum: (President’s • An assessment of the survivors’ social and support systems. Cancer Panel, • A description of elements of patient care for which the caregiver 200) will be responsible. Caregivers should be provided adequate and, as needed, ongoing hands-on training to perform these tasks. • Telephone contacts and written information related to caregiver tasks. • Referral to caregiver support groups or organizations either in the caregiver’s local area or to national and online support services. Recommendation 8a Qualified providers in the treatment setting should train and assist parents to assume their crucial roles in helping the child with cancer return to school and becoming an educator and advocate with individual teachers and the school system. Recommendation 8b Pediatric cancer centers should offer and promote teacher training as a part of their community outreach efforts to help ensure that the needs of pediatric cancer survivors returning to the classroom are met. Internet-based training modules also should be considered to extend the geographic reach of these training efforts. If possible, continuing education units (CEUs) should be provided to participating teachers. Recommendation 8c NCI and the Dept. of Education should explore collaborative opportunities to improve the classroom re-entry and re- integration of young people with cancer or other chronic or catastrophic illnesses (e.g., remote learning, teacher training). Recommendation 9b As part of the process of transitioning survivors of childhood cancers into the adult care setting, information about young adult support groups, Internet sites, and other sources of information and support specific to this age group should be provided to survivors and their families. Recommendation 10 Cancer care providers should inform families of cancer patients about supportive services, including special camps for families and siblings. continued

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 CANCER CARE FOR THE WHOLE PATIENT TABLE C-1 Continued Report Recommendations Recommendation 12a Family members, primary care providers, cancer specialists, and others who are close to or provide medical care to adolescent and young adult survivors should be made aware that depression, anxiety, or other psychosocial issues may affect the survivor long after treatment ends and should be instructed on how to intervene should the survivor experience such difficulties. Recommendation 12b Adolescent and young adult survivors should be taught self-advocacy skills that may be needed to secure accommodations for learning differences resulting from cancer or its treatment. Physicians and other providers should act as advocates for survivors when necessary. Recommendation 16 Health care providers must ascertain the strength of an older survivor’s social and caregiver support system. This should be assessed at diagnosis, during treatment, and at intervals after treatment is completed. Oncology nurses, nurse practitioners, other advanced practice nurses, physician assistants, social workers, patient navigators, or other non-physician personnel may be best able to make these assessments and arrange assistance and services for survivors who lack adequate support. Recommendation 17 Health care providers should not assume that older cancer survivors and their partners are uninterested in sexuality and intimacy. Survivors should be asked directly if they have concerns or are experiencing problems in this area and should receive appropriate referrals to address such issues. Employment From Cancer Recommendation 8 Employers, legal advocates, health care providers, Patient to Cancer sponsors of support services, and government agencies should act to Survivor: Lost in eliminate discrimination and minimize adverse effects of cancer on Transition (IOM employment, while supporting cancer survivors with short-term and and NRC, 2006) long term limitations in ability to work. The following text follows the recommendation: • Cancer professionals, advocacy organizations, and the NCI and other government agencies should continue to educate employers and the public about the successes achieved in cancer treatment, the improved prospects for survival, and the continued productivity of most patients who are treated for cancer. • Public and private sponsors of services to support cancer survivors and their families should finance programs offering education, counseling, support, legal advice, vocational rehabilitation, and referral for survivors who want to work.

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 APPENDIX C TABLE C-1 Continued Report Recommendations • Providers who care for cancer survivors should become familiar with the employment rights that apply to survivors who want to work and make available information about employment rights and programs that provide counseling, legal services, and referral. • Providers should routinely ask patients who are cancer survivors if they have physical or mental health problems that are affecting their work, with the goal of improving symptoms and referring patients for rehabilitative and other services. • Employers should implement programs to assist cancer survivors. Examples include short- and long-term disability insurance, return to work programs, wellness programs, accommodation of special needs, and employee assistance programs. • Cancer survivors should tell their physicians when health problems are affecting them at work. Survivors should educate themselves about their employment rights and contact support organizations for assistance and referrals when needed. Workforce Education NCCN Distress Educational and training programs should be developed to ensure that Management health care professionals and pastoral caregivers have knowledge and Clinical Practice skills in the assessment and management of distress. Guidelines (NCCN, 2006) Clinical Practice Clinic-based protocols should be developed to ensure that all staff Guidelines for working with patients with cancer have participated in relevant the Psychosocial communication skills training. Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Meeting • Sponsors of professional education and training programs (e.g., NCI, Psychosocial ACS, American Society of Clinical Oncology [ASCO], Oncology Needs of Women Nursing Society, Association of Oncology Social Work, American with Breast Cancer Society-Commission on Cancer, American Psychosocial Cancer (IOM Society) should support continuing education programs by designing, and NRC, 200) recommending, or funding them at a level that recognizes their importance in psycho-oncology for oncologists, those in training programs, and nurses and for further development of programs similar to the ASCO program to improve clinician’s communication skills; and continued

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 CANCER CARE FOR THE WHOLE PATIENT TABLE C-2 Continued Report Recommendations Childhood Cancer Recommendation 1 Develop evidence-based clinical practice Survivorship (IOM, guidelines for the care of survivors of childhood cancer. 2003) The NCI should convene an expert group of consumers, providers, and researchers to review available clinical practice guidelines and agree upon an evidence-based standard for current practice. For areas where bodies of evidence have not been rigorously evaluated, AHRQ Evidence Practice Centers should be charged to review the evidence. When evidence upon which to make recommendation is not available, the expert group should identify areas in need of research. Research and Demonstrations Ensuring Quality Recommendation 8 Public and private sponsors of cancer care Cancer Care (IOM, research should support national studies of recently diagnosed 1999) individuals with cancer, using information sources with sufficient detail to assess patterns of cancer care and factors associated with the receipt of good care. . . . Recommendation 10 Studies are needed to find out why specific segments of the population (e.g., members of certain racial or ethnic groups, older patients) do not receive appropriate cancer care. These studies should measure provider and individual knowledge, attitudes, and beliefs, as well as other potential barriers to access to care. Enhancing Data Recommendation 1 Systems to Improve b. Research sponsors (e.g., AHRQ, NCI, HCFA,VA) should invest the Quality of in studies to identify evidence-based quality indicators across the Cancer Care (IOM, continuum of cancer care. 2000) Recommendation 9 Federal research agencies (e.g., NCI, AHRQ, HCFA, VA) should fund demonstration projects to assess the application of quality monitoring programs within health care systems and the impact of data-driven changes in the delivery of services on the quality of health care. Findings from the demonstrations should be disseminated widely to consumers, payers, purchasers, and cancer care providers.

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 APPENDIX C TABLE C-2 Continued Report Recommendations Bridging Disciplines Recommendation 1 Federal and private research sponsors should in the Brain, seek to identify areas that can be most effectively investigated with Behavioral, and interdisciplinary approaches. Clinical Sciences Recommendation 2 Funding agencies and universities should remove (IOM, 2000) the barriers to interdisciplinary research and training . . . by • Requiring commitments from university administration to qualify for funding for interdisciplinary efforts. These should include supportive promotion policies, allocation of appropriate overhead, and allocation of shared facilities. • Facilitate interactions among investigators in different disciplines by funding shared and core facilities. • Encouraging legislation to expand loan repayment programs to include investigators outside NIH who are engaged in funded interdisciplinary and translational research. • Supporting peer review that facilitates interdisciplinary efforts. • Continuing and expanding partnerships among funding agencies to provide the broadest base for interdisciplinary efforts. • Indicating in funding announcements that training is an integral component on the interdisciplinary research project. Universities should: • Allocate appropriate credit for interdisciplinary efforts . . . including fair allocation of research overhead costs to the home departments of all investigators and a fair credit for faculty contributions. • Review and revise appointment, promotion, and tenure policies to ensure that they do not impede interdisciplinary research and teaching. • Facilitate interaction among investigators through support for shared facilities. • Encourage development, maintenance, and evolution of interdisciplinary institutes, centers, and programs for appropriate problems. Improving Palliative Recommendation 2 The NCI should add the requirement of Care for Cancer research in palliative care and symptom control for recognition as a (IOM and NRC, “comprehensive cancer center.” 2001) The Health Care Financing Administration should fund demonstration projects for service delivery and reimbursement that integrate palliative care and potentially life-prolonging treatments throughout the course of disease. continued

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00 CANCER CARE FOR THE WHOLE PATIENT TABLE C-2 Continued Report Recommendations Childhood Cancer Recommendation 7 Public and private research organizations Survivorship (IOM, (e.g., NCI, National Institute of Nursing Research, ACS) should 2003) increase support for research to prevent or ameliorate the long- term consequences of childhood cancer. Priority areas of research include assessing the prevalence and etiology of late effects; testing methods that may reduce late effects during treatment; developing interventions to prevent or reduce late effects after treatment; and furthering improvements in quality of care to ameliorate the consequences of late effects on individuals and families. • Research is needed on the long-term social, economic, and quality of life implications of cancer on survivors and their families. . . . Achieving Recommendation 5.1 Accelerate research to promote recovery and the Promise: resilience, and ultimately to cure and prevent mental illness. Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003)

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01 APPENDIX C TABLE C-2 Continued Report Recommendations Workforce Education and Training Bridging Disciplines Recommendation 3 Scientific education at early career stages should in the Brain, be sufficiently broad to produce graduates who can understand Behavioral, and essential components of other disciplines while receiving a solid Clinical Sciences grounding in one or more fields. Criteria for NIH-supported (IOM, 2000) research training should include both breadth and depth of education. Funding mechanisms to support interdisciplinary training in appropriate fields should provide additional incentives to the universities and the trainees along the following lines: • Through the NIH Medical Scientist Training Program, encourage participating universities to support MD/PhD programs in the social and behavioral, as well as biomedical, sciences. Although existing program language permits such graduate study, training in social and behavioral sciences (e.g., anthropology, economics, psychology, and sociology) is undertaken infrequently. NIH can highlight the need for such graduates and encourage grantees to recruit them. • Promote translational research, an important aspect of interdisciplinary training by (1) providing clinical experience in PhD programs. This can range from support for single courses that expose students to human pathophysiology to training programs that require both basic research and clinical experience. (2) Supporting PhD programs and postdoctoral mentored career development awards for physicians, nurses, dentists, social workers, and other clinicians. • Create partnerships with the private sector to develop and support interdisciplinary training. Many of today’s students will enter private industry to do translational research. Others will go on to careers in teaching, publishing, science policy, science administration, or law. Interdisciplinary perspectives are as important to success in these careers as they are in research. • Expand the T32 training grant awards to cover the full direct costs of implementation. This change will provide the resources necessary to support the greater expenses encountered in an interdisciplinary training program. Recommendation  Funding agencies should establish a grant supplement program to foster interdisciplinary training and research. This would be administratively modeled after the supplements that exist for minorities, people with disabilities, and for people reentering research after a hiatus. Investigators with research grants who have interdisciplinary training opportunities should be able to obtain supplemental funds for qualified candidates through a relatively short application with expedited review. Successful pilot efforts will provide data to support further applications for career development and research. continued

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02 CANCER CARE FOR THE WHOLE PATIENT TABLE C-2 Continued Report Recommendations Recommendation 5 Funding opportunities for interdisciplinary training should be provided for scientists at all stages of their careers. • Implement career development programs that encourage junior faculty to engage in interdisciplinary research. Junior faculty need to be successful in the early phases of their research, so they are less likely than senior faculty to pursue interdisciplinary research. • Support midcareer investigators in developing expertise needed for interdisciplinary research. These programs should include sabbaticals, career development awards, and university- based, formal courses for faculty development to enhance interdisciplinary and/or translational research. • Continue funding for workshops, symposia, and meetings to bring together diverse fields to focus on a particular scientific question. In such an environment, cross training of the investigators and encouragement of collaboration would develop naturally. • Support consortia and multi-institutional programs that provide integration of research efforts from multiple disciplines. Childhood Cancer Recommendation  Improve professional education and training Survivorship: regarding the late effects of childhood cancer and their management Improving Care for both specialty and primary care providers. and Quality of Life • Professional societies should act to improve primary care (IOM and NRC, providers’ awareness through professional journals, meetings, and 2003) continuing education opportunities. • Primary care training programs should include information about the late effects of cancer in their curriculum. • The NCI should provide easy-to-find information on late effects of childhood cancer on its website (e.g., through the Physician Data Query [PDQ]), which provides up-to-date information on cancer prevention, treatment, and supportive care. • Oncology training programs should organize coursework, clinical practicums, and continuing education programs on late effects of cancer treatment for nurses, social workers, and other providers. • Oncology professional organizations should, if they have not already, organize committees or subcommittees dedicated to issues related to late effects. • Oncology Board examinations should include questions related to late effects of cancer treatment. • Interdisciplinary professional meetings that focus on the management of late effects should be supported to raise awareness of late effects among providers who may encounter childhood cancer survivors in their practices (cardiologists, neurologists, fertility specialists, psychologists).

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0 APPENDIX C TABLE C-2 Continued Report Recommendations Achieving Recommendation 5.3 Improve and expand the workforce providing the Promise: evidence-based mental health services and supports. Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Palliative Care Improving Palliative Recommendation 1 The NCI should designate certain cancer Care for Cancer centers, as well as some community cancer centers, as centers of (IOM and NRC, excellence in symptom control and palliative care for both adults 2001) and children. The centers will deliver the best available care, as well as carrying out research, training, and treatment aimed at developing portable model programs that can be adopted by other cancer centers and hospitals. Activities should include but not be limited to the following: • formal testing and evaluation of new and existing practice guidelines for palliative and end-of-life care; • pilot testing “quality indicators” for assessing end-of-life care at the level of the patient and the institution; • incorporating the best palliative care into NCI-sponsored clinical trials; • innovating in the delivery of palliative and end-of-life care, including collaboration with local hospice organizations; • disseminating information about how to improve end-of-life care to other cancer centers and hospitals through a variety of media; • uncovering the determinants of disparities in access to care by minority populations that should be served by the center, and developing specific programs and initiatives to increase access; these might include educational activities for health care providers and the community, setting up outreach programs, etc.; . . . • providing in-service training for local hospice staff in new palliative care techniques. Recommendation 5 Organizations that provide information about cancer treatment (NCI, the American Cancer Society, and other patient-oriented organizations [e.g., disease-specific groups], health insurers, and pharmaceutical companies) should revise their inventories of patient-oriented material, as appropriate, to provide comprehensive, accurate information about palliative care throughout the course of disease. Patients would also be helped by having reliable information on survival by type and stage of cancer easily accessible. Attention should be paid to cultural relevance and special populations (e.g., children). continued

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0 CANCER CARE FOR THE WHOLE PATIENT TABLE C-2 Continued Report Recommendations Reimbursement Improving Palliative Recommendation  Private insurers should provide adequate Care for Cancer compensation for end-of-life care. The special circumstances of (IOM and NRC, dying children—particularly the need for extended communication 2001) with children and parents, as well as health care team conferences— should be taken into account in setting reimbursement levels and in actually paying claims for these services when providers bill for them. Research Achieving Recommendation 5. Develop the knowledge base in four the Promise: understudied areas: mental health disparities, long-term effect of Transforming medications, trauma, and acute care. Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Public Health From Cancer Patient Recommendation 6 Congress should support the CDC, to Cancer Survivor: other collaborating institutions, and the states in developing Lost in Transition comprehensive cancer control plans that include consideration of (IOM and NRC, survivorship care, and promoting the implementation, evaluation, 2006) and refinement of existing state cancer control plans. Other Crossing the Quality Recommendation 1 All health care organizations, professional Chasm (IOM and groups, and private and public purchasers should adopt as their NRC, 2001) explicit purpose to continually reduce the burden of illness, injury, and disability, and to improve the health and functioning of the people of the United States. Recommendation 2 All health care organizations, professional groups, and private and public purchasers should pursue six major aims; specifically, health care should be safe, effective, patient- centered, timely, efficient, and equitable.

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405 APPENDIX C TABLE C-2 Continued Report Recommendations Recommendation 4 Private and public purchasers, health care organizations, clinicians, and patients should work together to redesign health care processes in accordance with the following rules: 1. Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face- to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits. 2. Customization based on patient needs and values. The system of care should be designed to meet the most common type of needs, but have the capability to respond to individual patient choices and preferences. 3. The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making. 4. Shared knowledge and the free flow of information. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information. 5. Evidence-based decision making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place. 6. Safety as a system property. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors. 7. The need for transparency. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments. This should include information describing the system’s performance on safety, evidence-based practice, and patient satisfaction. 8. Anticipation of needs. The health system should anticipate patient needs rather than simply reacting to events. 9. Continuous decrease in waste. The health system should not waste resources or patient time. 10. Cooperation among clinicians. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care. Recommendation 11 The Health Care Financing Administration and the Agency for Healthcare Research and Quality, with input from private payers, health care organizations, and clinicians, should develop a research agenda to identify, pilot test, and evaluate various options for better aligning current payment methods with quality improvement goals. continued

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0 CANCER CARE FOR THE WHOLE PATIENT TABLE C-2 Continued Report Recommendations Childhood Cancer Recommendation 5 HRSA’s Maternal and Child Health Bureau and Survivorship: its partners should be fully supported in implementing the Healthy Improving Care People 2010 goals for Children with Special Health Care Needs. and Quality of Life These efforts include a national communication strategy, efforts at (IOM and NRC, capacity building, setting standards, and establishing accountability. 2003) Meeting these goals will benefit survivors of childhood cancer and other children with special health care needs. Achieving Recommendation 2.2 Involve consumers and families fully in the Promise: orienting the mental health systems toward recovery. Transforming Recommendation .2 Improve and expand school mental health Mental Health programs. Care in America (New Freedom Commission on Mental Health, 2003) REFERENCES IOM (Institute of Medicine). 1999. Ensuring quality cancer care. Edited by M. Hewitt and J. V. Simone. Washington, DC: National Academy Press. IOM. 2000. Bridging disciplines in the brain, behaioral, and clinical sciences. Edited by T. C. Pellmar and L. Eisenberg. Washington, DC: National Academy Press. IOM. 2006. Improing the quality of health care for mental and substance-use conditions. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2000. Enhancing data systems to improe the quality of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Interpreting the olume-outcome relationship in the context of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Improing palliatie care for cancer. Edited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. IOM and NRC. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. IOM and NRC. 2003. Childhood cancer suriorship. Improing care and quality of life. Edited by M. Hewitt, S. L. Weiner, and J. V. Simone. Washington, DC: The National Academies Press. IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. C. Holland. Washington, DC: The National Academies Press. IOM and NRC. 2006. From cancer patient to cancer surior: Lost in transition. Edited by M. Hewitt, S. Greenfield, and E. Stovall. Washington, DC: The National Academies Press. National Breast Cancer Centre and National Cancer Control Initiative. 2003. Clinical prac- tice guidelines for the psychosocial care of adults with cancer. http://www.nhmrc.gov. au/publications/synopses/_files/cp90.pdf.

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0 APPENDIX C NCCN (National Comprehensive Cancer Network). 2006. Distress management—ersion 1.200. http://www.nccn.org/professionals/physician_gls/PDF/distress.pdf (accessed Sep- tember 14, 2007). New Freedom Commission on Mental Health. 2003. Achieing the promise: Transforming mental health care in America. Final Report. DHHS Publication No. SMA-03-3832. Rockville, MD: Department of Health and Human Services. Pirl, W. F. 2004. Evidence report on the occurrence, assessment, and treatment of depression in cancer patients. Journal of the National Cancer Institute Monographs 32:32–39. President’s Cancer Panel. 2004. Liing beyond cancer: Finding a new balance. President’s Can- cer Panel 2003–2004 annual report. Bethesda, MD: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services.

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