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Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler NE, Page AEK, editors. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington (DC): National Academies Press (US); 2008.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.

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CRecommendations 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.
Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003)Emotional and Social Support Guideline: The extent to which a person with cancer has support and feels supported has been identified as a major factor in their adjustment to the disease. It is essential to check the extent of support available to the patient, to recommend additional support as required and to provide information about where this is available.
Gender and psychosocial support Guideline: Clinicians and the treatment team need to consider that the psychosocial needs of men and women may vary both in extent and 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 the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003)Recommendation 1.1 Advance and implement a national campaign to reduce the stigma of seeking care and a national strategy for suicide prevention.
Recommendation 1.2 Address mental health with the same urgency as physical health.
Recommendation 2.3 Align relevant federal programs to improve access and accountability for mental health services.
Recommendation 2.4 Create a Comprehensive State Mental Health 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 4.1 Promote the mental health of young children.
Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004) Breast cancer care clinicians, such as oncologists and other medical professionals, responsible for the care of women with breast cancer should incorporate planning for psychosocial management as an integral part of treatment. They should routinely assess and address psychosocial distress as a part of total medical care.
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 6 Congress should support the Centers for Disease Control and Prevention (CDC), other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation, and refinement of existing state cancer control plans.
Screening
NCCN Distress Management Clinical Practice Guidelines, (NCCN, 2006)
  • All patients should be screened for distress at their initial visit, at appropriate intervals, and as clinically indicated especially with changes in disease status (i.e., remission, recurrence, progression).
  • Screening should identify the level and nature of the distress.
  • Conduct multi-center trials that explore brief screening instruments….
Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Clinic-based protocols should be developed to ensure that all patients are screened for clinically significant anxiety and depression.
Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 4.3 Screen for co-occurring mental and substance-use disorders and link with integrated treatment strategies.
Improving the Quality of Health Care for Mental and Substance-Use Conditions (IOM, 2006)Recommendation 5-1 To make collaboration and coordination of patients’ mental and substance-use health care services the norm, providers of the services should establish clinically effective linkages within their own organizations and between providers of mental health and substance-use treatment. The necessary communications and 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 the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 2.1 Develop an individualized plan of care for every adult with a serious mental illness and child with a serious emotional disturbance.
Quality Improvement
Improving Palliative Care for Cancer (IOM and NRC, 2001) Recommendation 6: Best available practice guidelines should dictate the standards of care for both physical and psychosocial symptoms. Care systems, payers, and standard-setting and accreditation bodies 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 Management Clinical Practice Guidelines (NCCN, 2006)
  • Distress should be assessed and managed according to clinical practice guidelines.
  • Multidisciplinary institutional committees should be formed to implement standards for distress management.
  • 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 Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004) Providers of cancer care should meet the standards of psychosocial care developed by the American College of Surgeon’s Commission on Cancer and follow the National Comprehensive Cancer Center Network’s (NCCN) Clinical Practice Guidelines for the Management of Distress.
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 4 Quality of survivorship care measures should be developed through public/private partnerships and quality assurance programs implemented by health systems to monitor and improve the care that all survivors receive.
Continuity of Care
Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 2004)Recommendation 1a Upon discharge from cancer treatment, including treatment of recurrences, every patient should be given a record of all care received and important disease characteristics, this should include, at a minimum: …
  • Psychosocial … services provided.
  • 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).
Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre [NBCC] and National Cancer Control Initiative [NCCI], 2003)Clinic-based protocols should be developed to ensure that:
  • All patients are able to identify a key health professional responsible for continuity of care.
  • Referral pathways for liaison psychiatry, psychologists, support groups, and relevant allied health professionals are established and known to the team.
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 2 Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This “Survivorship Care Plan” should be written by the principal providers(s) who coordinated 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.
Improving the Quality of Health Care for Mental and Substance-Use Conditions (IOM, 2006)Recommendation 5-2 To facilitate the delivery of coordinated care by primary care, mental health, and substance-use treatment providers, government agencies, purchasers, health plans, and accreditation organizations should implement policies and incentives to continually increase collaboration among these providers to achieve evidence-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.
Patient Education and Illness Self-Management
Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 2004)Recommendation 2 Procedures should be established within diverse patient care settings to better inform patients/survivors and their caregivers about available legal and regulatory protections and resources [e.g., pertaining to employment and insurance.].
Recommendation 5a All survivors should be counseled about common psychosocial effects of cancer and cancer treatment and provided specific referrals to available support groups and services.
Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003)Clinic-based protocols should be developed to ensure the following goals:
  • Copies of evidence-based information about treatment options are provided to all patients.
  • Listings of other information resources which may be of value are provided to all patients.
Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 2.5 Protect and enhance the rights of people with mental illness.
Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004) The National Cancer Institute (NCI), the American Cancer Society (ACS), and professional organizations (e.g., American Society of Clinical Oncology, American College of Surgeons, American Association of Colleges of Nursing, American Psychosocial Oncology Society, American Society of Social Work, American Society for Therapeutic 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.
Public Education
Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 2004)Recommendation 4a National public education efforts sponsored by coalitions of public and private cancer information and professional organizations and the media (e.g., film, television, print, and broadcast news) should be undertaken to:
  • Raise awareness of survivor experiences and capabilities, and of 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 Management Clinical Practice Guidelines (NCCN, 2006) Licensed mental health professionals and certified pastoral caregivers experienced in psychosocial aspects of cancer should be readily available as staff members or by referral.
Reimbursement
Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 2004)Recommendation 7b Adequate reimbursement for prosthetics must be provided and it must be recognized that:
  • Many prostheses must be replaced periodically.
  • Access to prostheses is an integral part of psychosocial care for cancer.
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 Management Clinical Practice Guidelines (NCCN, 2006) Medical care contracts should include reimbursement for services provided by mental health professionals.
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006)Recommendation 2 Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This “Survivorship Care Plan” should be written by the principal providers(s) who coordinated 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 Cancer: Finding a New Balance (President’s Cancer Panel, 2004)Recommendation 5b A caregiver plan should be developed and reviewed with a survivor’s caregiver(s) at the outset of cancer treatment. It should include, at a minimum:
  • An assessment of the survivors’ social and support systems.
  • A description of elements of patient care for which the caregiver 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 reintegration 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.
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 Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006)Recommendation 8 Employers, legal advocates, health care providers, sponsors of support services, and government agencies should act to eliminate discrimination and minimize adverse effects of cancer on employment, while supporting cancer survivors with short-term and 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.
  • 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 Management Clinical Practice Guidelines (NCCN, 2006) Educational and training programs should be developed to ensure that health care professionals and pastoral caregivers have knowledge and skills in the assessment and management of distress.
Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Clinic-based protocols should be developed to ensure that all staff working with patients with cancer have participated in relevant communication skills training.
Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004)
  • Sponsors of professional education and training programs (e.g., NCI, ACS, American Society of Clinical Oncology [ASCO], Oncology Nursing Society, Association of Oncology Social Work, American Cancer Society-Commission on Cancer, American Psychosocial Society) should support continuing education programs by designing, 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
  • Graduate education programs for oncology clinicians, primary care practitioners, nurses, social workers, and psychologists should evaluate their capacity to incorporate a core curriculum in psychooncology in their overall curriculum taught by an adequately trained faculty in psycho-oncology and to include relevant questions in examination requirements.
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006)Recommendation 7 The National Cancer Institute (NCI), professional associations, and voluntary organizations should expand and coordinate their efforts to provide educational opportunities to health care providers to equip them to address the health care and quality of life issues facing cancer survivors.(The text below follows the recommendation):Immediate steps to facilitate the development of programs include:
  • Establish a clearinghouse of available sources of survivorship education and training (and guidelines), with opportunity for feedback.
  • Appoint an interdisciplinary consortium to review available resources, identify promising approaches, develop new programs, and promote cost-effective approaches.
  • Increase support of model formal training programs (undergraduate and graduate levels, continuing medical education) that could be adopted by others.
By specialty:
Physicians
  1. Add more survivorship-related CME:
    • The American Board of Medical Specialties’ new program, “Maintenance of Certification,” will require continuous assurance of professional skills for board-certified physicians. The development of a model on cancer survivorship as part of this program could facilitate the assurance of competence for these and other specialty providers.
  2. Improve online survivorship information aimed at health care providers:
    • Expand physician data query to include more information on survivorship care.
    • Centralize survivorship guidelines online.
    • Encourage the development and adoption of evidence-based guidelines.
    • Ease finding survivorship-related guidelines included in the AHRQ-sponsored guideline clearinghouse (e.g., add the term survivorship to the search engine to pick up surveillance guidelines for cancer).
  3. Expand training opportunities to promote interdisciplinary shared care.
Nurses
  1. Increase survivorship content in undergraduate and graduate nursing programs.
  2. Expand continuing education opportunities on survivorship for practicing nurses.
  3. Increase the number of nursing schools that provide graduate training in oncology.
  4. Increase the number of nurses who seek certification in oncology (incentives are needed).
  5. Endorse activities of those working to ease the nursing shortage.
Social workers and other providers of psychosocial services
  1. Support efforts of APOS to standardize and promote continuing education.
  2. Endorse activities of those working to maintain social services in cancer programs.
Research and Demonstrations
NCCN Distress Management Clinical Practice Guidelines (NCCN, 2006) Conduct multicenter trials that … pilot treatment guidelines.
Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004)
  1. Research sponsors (e.g., NCI, ACS) and professional organizations (e.g., American Society of Clinical Oncology, American College of Surgeons, American Association of Colleges of Nursing, American Psychosocial Oncology Society, American Society of Social Work, American Society for Therapeutic Radiology and Oncology, Oncology Nursing Society) need to support efforts in collaboration with advocacy groups (e.g., National Breast Cancer Coalition, National Alliance of Breast Cancer Organizations) to enhance practice environments to promote coordinated, comprehensive, and compassionate care.
  2. Research sponsors (e.g., NCI, ACS) should continue to support basic and applied psycho-oncology research. This might include:
    • Further development of simple, rapid screening tools for identifying the patient with distress in outpatient offices and training of primary oncology teams in diagnosis of distress that exceeds the “expected” and when referral to supportive services should be made;
    • Studies that assess the relative effectiveness of various psychosocial interventions, using population-based patient samples of adequate size, the timing and duration of intervention, and innovative and inexpensive modes of administration (e.g., Internet-based approaches);
    • A consensus conference to develop a battery of standard instruments for outcome measures to permit comparison of data from studies carried out by different research groups;
    • Organization of a psychosocial clinical trials group in which a network of researchers could address key questions in multi-center studies that would allow access to large, population-based samples;
    • Clinical trials of psychosocial interventions that are conducted within routine breast cancer care in which cost and quality of life are outcome measures; and
    • A registry of ongoing psychosocial research/trials to assist researchers in identifying and tracking new areas of study.
  3. The NCI should support a special study to ascertain the use of, and unmet need for, cancer-related supportive care services (including psychosocial services) in the United States. The results of such a study could provide benchmarks against which care can be measured and performance monitored. Such a study would document existing disparities in service use by age, race/ethnicity, geography, and insurance coverage.
Evidence Report on the Occurrence, Assessment, and Treatment of Depression in Cancer Patients (Pirl, 2004)More research is needed on factors that may cause varying rates of depression and that predict which patients are most at risk. Longitudinal studies are needed to estimate the incidence of depression starting at the time of or, ideally, before diagnosis of cancer.Many instruments with a wide range of complexity are currently being used to measure depressive symptoms…. Multiple methods of assessment make it difficult to compare studies. A consensus choice of instruments may help to standardize research on depression that is comorbid with cancer.
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006)Recommendation 5 The Centers for Medicare and Medicaid Services (CMS), National Cancer Institute (NCI), Agency for Healthcare Research and Quality (AHRQ), the Department of Veterans Affairs (VA), and other qualified organizations should support demonstration programs to test models of coordinated, interdisciplinary survivorship care in diverse communities and across systems of care.
Recommendation 10 The NCI, CDC, AHRQ, CMS, VA, private voluntary organizations such as the American Cancer Society, and private health insurers and plans should increase their support of survivorship research and expand mechanisms for its conduct. New research initiatives focused on cancer patient follow-up are urgently needed to guide effective survivorship care.Research is especially needed to improve understanding of …
  • The cost-effectiveness of alternative models of survivorship care and community-based psychosocial services including:
  • Survivors’ and caregivers’ attitudes and preferences regarding outcomes and survivorship care;
  • Needs of racial, ethnic groups, residents of rural areas, and other potentially underserved groups; and
  • Supportive and rehabilitation programs.
  • Interventions to improve the quality of life, including:
    • Family and caregiver needs and access to supportive services.
    • Mechanisms to reduce financial burdens of survivorship care (e.g., the new Medicare prescription drug benefit should be carefully monitored to evaluate its impact, especially how private plan formularies cover cancer drugs).
    • Employer programs to meet return-to-work needs.
    • Approaches to improve health insurance coverage.
    • Legal protections afforded cancer survivors through the Americans with Disabilities Act (ADA), Family and Medical Leave Act, Health Insurance Portability and Accountability Act (HIPAA), and other laws.
  • Survivorship research methods including barriers to participation, impact of HIPAA, and methods to overcome challenges of survivorship research (e.g., methods to adjust for bias introduced by nonparticipation; methods to minimize loss-to follow-up).

TABLE C-2 Other Recommendations of Potential Relevance

Report Recommendations
Access
Ensuring Quality Cancer Care (IOM, 1999)Recommendation 9 Services for the un- and underinsured should be enhanced to ensure entry to, and equitable treatment within, the cancer care system.
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.
Data Systems
Ensuring Quality Cancer Care (IOM, 1999) Recommendation 7 A cancer data system is needed that can provide quality benchmarks for use by systems of care (such as hospitals, provider groups, and managed care systems).
Enhancing Data Systems to Improve the Quality of Cancer Care (IOM and NRC, 2000)Recommendation 2 Congress should increase support to CDC for the National Program of Cancer Registries (NPCR) to improve the capacity of states to achieve complete coverage and timely reporting of incident cancer cases. NPCR’s primary purpose is cancer surveillance, but NPCR, together with SEER, has great potential to facilitate national, population-based assessments of the quality of cancer care through linkage studies and by serving as a sample frame for special studies.
Recommendation 3 Private cancer-related organizations should join the American Cancer society and the American College of Surgeons to provide financial support for the National Cancer Data Base. Expanded support would facilitate efforts underway to report quality benchmarks and performance data to institutions providing cancer care.
Recommendation 4 Federal research agencies (e.g., NCI, CDC, AHRQ, Health Care Financing Administration) should support research and demonstration projects to identify new mechanisms to organize and finance the collection of data from cancer care quality studies. Current data systems tend to be hospital based, while cancer care is shifting to outpatient settings. New models are needed to capture entire episodes of care, irrespective of the setting of care.
Recommendation 5 Federal research agencies (e.g., National Institutes of Health, Food and Drug Administration, CDC, VA) should support public private partnerships to develop technologies, including computer-based patient record systems and intranet-based communication systems, that will improve the availability, quality, and timeliness of clinical data relevant to assessing quality of cancer care.
Recommendation 7 Federal research agencies (e.g., NCI, AHRQ, VA) should expand support for health services research, especially studies based on the linkage of cancer registry to administrative data and special studies of cases sampled from cancer registries. Resources should also be made available through NPCR and SEER to provide technical assistance to states to help them expand the capability of using cancer registry data for quality improvement initiatives. NPCR should also be supported in its efforts to consolidate state data and link them to national data files.
Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003)Recommendation 6.1 Use health technology and telehealth to improve access and coordination of mental health care, especially for Americans in remote areas or in underserved populations.
Recommendation 6.2 Develop and implement integrated electronic health record and personal health information systems.
Quality Improvement
Childhood Cancer Survivorship: Improving Care and Quality of Life(IOM and NRC, 2003)Recommendation 1 Develop evidence-based clinical practice guidelines for the care of survivors of childhood cancer. 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 Based Practice Centers should be charged to review the evidence. When evidence upon which to make recommendations is not available, the expert group should identify areas in need of research.
Recommendation 2 Define a minimum set of standards for systems of comprehensive, multidisciplinary follow-up care that link specialty and primary care providers, ensure the presence of such a system within institutions treating children with cancer, and evaluate alternative models of delivery of survivorship care.
  • The NCI should convene an expert group of consumers, providers, and health services researchers to define essential components of a follow-up system and propose alternative ways to deliver care. Consideration could be given to long-term follow-up clinics, collaborative practices between oncology and primary care physicians, and other models that might be dictated by local practices and resources, patient and family preferences, geography, and other considerations. Any system that is developed should assure linkages between specialty and primary care providers.
  • A set of minimal standards for designation as a late effects clinic should be endorsed and adopted by relevant bodies such as Children’s Oncology Group (COG), the American Society of Pediatric Hematology/Oncology, the American Academy of Pediatrics, the American Society of Clinical Oncology, the American College of Surgeon’s Commission on Cancer, and the NCI in its requirements for approval for comprehensive cancer centers.
  • COG members and other institutions treating children with cancer should ensure that a comprehensive, multidisciplinary system of follow-up care is in place to serve the needs of patients and their families discharged from their care.
  • State comprehensive cancer control plans being developed and implemented with CDC support should include provisions to ensure appropriate follow-up care for cancer survivors and their families.
  • Grant programs of HRSA (e.g., Special Projects of Regional and National Significance [SPRANS]) should support demonstration programs to test alternative delivery systems (e.g., telemedicine, outreach programs) to ensure that the needs of different populations are met (e.g., rural residents or those living far from specialized late-effects clinics, ethnic and minority groups). Needed also are evaluations to determine which models of care confer benefits in terms of preventing or ameliorating late effects and improving quality of life, and which models survivors and their families prefer.
Recommendation 3 Improve awareness of late effects and their implications to long-term health among childhood cancer survivors and their families.
  • Clinicians providing pediatric cancer care should provide survivors and their families written information regarding the specific nature of their cancer and its treatment, the risks of late effects, and a plan (and, when appropriate, referrals) for follow-up. Discussions of late effects should begin with diagnosis.
  • Public and private sponsors of health education (e.g., NCI, ACS) should launch informational campaigns and provide support to survivorship groups that have effective outreach programs.
Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.2 Advance evidence-based practices using dissemination and demonstration projects and create a public-private partnership to guide their implementation.
Quality Measurement
Ensuring Quality Cancer Care (IOM, 1999)Recommendation 3 Measure and monitor the quality of care using a core set of quality measures. Measures should:
  • span the continuum of cancer care and be developed through a coordinated public-private effort;
  • be used to hold providers, including health care systems, health plans, and physicians accountable for providing and improving quality care;
  • be applied to care provided through the Medicare and Medicaid programs as a requirement of participation in these programs; and
  • be disseminated widely and communicated to purchasers, providers, consumer organizations, individuals with care, policy makers, and health services researchers, in a form that is relevant and useful for health care decision-making.
Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000)Recommendation 1 Develop a core set of cancer care quality measures.
a.

The secretary of DHHS should designate a committee made up of representatives of public institutions (e.g., The DHHS Quality of Cancer Care Committee, state cancer registries, academic institutions) and private groups (e.g., consumer organizations, professional associations, purchasers, health insurers and plans) to: 1) identify a single set of quality measures that span the full spectrum of an individual’s care and are based on the best available evidence; 2) advise other national groups (e.g., National Committee for Quality Insurance, Joint Commission on Accreditation of Healthcare Organizations, National Quality Forum) to adopt the recommended core set of measures….

b.

Research sponsors (e.g., AHRQ, NCI, HCFA, VA) should invest in studies to identify evidence-based quality indicators across the continuum of cancer care.

d.

Efforts to identify quality of cancer care measures should be coordinated with ongoing national efforts regarding quality of care.

From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 4 Quality of survivorship care measures should be developed through public/private partnerships and quality assurance programs implemented by health systems to monitor and improve the care that all survivors receive.
Childhood Cancer Survivorship (IOM, 2003)Recommendation 1 Develop evidence-based clinical practice guidelines for the care of survivors of childhood cancer.
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 Cancer Care (IOM, 1999)Recommendation 8 Public and private sponsors of cancer care research should support national studies of recently diagnosed 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 Systems to Improve the Quality of Cancer Care (IOM, 2000)Recommendation 1b. Research sponsors (e.g., AHRQ, NCI, HCFA, VA) should invest in studies to identify evidence-based quality indicators across the continuum of cancer care.
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.
Bridging Disciplines in the Brain, Behavioral, and Clinical Sciences (IOM, 2000)Recommendation 1 Federal and private research sponsors should seek to identify areas that can be most effectively investigated with interdisciplinary approaches.
Recommendation 2 Funding agencies and universities should remove 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 Care for Cancer (IOM and NRC, 2001)Recommendation 2 The NCI should add the requirement of research in palliative care and symptom control for recognition as a “comprehensive cancer center.”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.
Childhood Cancer Survivorship (IOM, 2003)Recommendation 7 Public and private research organizations (e.g., NCI, National Institute of Nursing Research, ACS) should 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 the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.1 Accelerate research to promote recovery and resilience, and ultimately to cure and prevent mental illness.
Workforce Education and Training
Bridging Disciplines in the Brain, Behavioral, and Clinical Sciences (IOM, 2000)Recommendation 3 Scientific education at early career stages should be sufficiently broad to produce graduates who can understand essential components of other disciplines while receiving a solid grounding in one or more fields. Criteria for NIH-supported 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 4 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.
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 Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003)Recommendation 4 Improve professional education and training regarding the late effects of childhood cancer and their management for both specialty and primary care providers.
  • Professional societies should act to improve primary care providers’ awareness through professional journals, meetings, and 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).
Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.3 Improve and expand the workforce providing evidence-based mental health services and supports.
Palliative Care
Improving Palliative Care for Cancer (IOM and NRC, 2001)Recommendation 1 The NCI should designate certain cancer centers, as well as some community cancer centers, as centers of excellence in symptom control and palliative care for both adults 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).
Reimbursement
Improving Palliative Care for Cancer (IOM and NRC, 2001) Recommendation 4 Private insurers should provide adequate compensation for end-of-life care. The special circumstances of dying children—particularly the need for extended communication 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 the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.4 Develop the knowledge base in four understudied areas: mental health disparities, long-term effect of medications, trauma, and acute care.
Public Health
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 6 Congress should support the CDC, other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation, and refinement of existing state cancer control plans.
Other
Crossing the Quality Chasm (IOM and NRC, 2001)Recommendation 1 All health care organizations, professional groups, and private and public purchasers should adopt as their 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.
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.
Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003) Recommendation 5 HRSA’s Maternal and Child Health Bureau and its partners should be fully supported in implementing the Healthy People 2010 goals for Children with Special Health Care Needs. These efforts include a national communication strategy, efforts at capacity building, setting standards, and establishing accountability. Meeting these goals will benefit survivors of childhood cancer and other children with special health care needs.
Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003)Recommendation 2.2 Involve consumers and families fully in orienting the mental health systems toward recovery.
Recommendation 4.2 Improve and expand school mental health programs.

REFERENCES

  1. IOM (Institute of Medicine). Ensuring quality cancer care. Washington, DC: National Academy Press; 1999.
  2. IOM. Bridging disciplines in the brain, behavioral, and clinical sciences. Hewitt M, Simone JV, editors. Washington, DC: National Academy Press; 2000.
  3. IOM. Improving the quality of health care for mental and substance-use conditions. Washington, DC: The National Academies Press; 2006.
  4. IOM and NRC (National Research Council). Enhancing data systems to improve the quality of cancer care. Washington, DC: National Academy Press; 2000.
  5. IOM; NRC. Interpreting the volume-outcome relationship in the context of cancer care. Washington, DC: National Academy Press; 2001. [PubMed: 25057568]
  6. IOM; NRC. Improving palliative care for cancer. Foley KM, Gelband H, editors. Washington, DC: National Academy Press; 2001.
  7. IOM; NRC. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press; 2001.
  8. IOM; NRC. Childhood cancer survivorship. Improving care and quality of life. Hewitt M, Weiner SL, Simone JV, editors. Washington, DC: The National Academies Press; 2003. [PubMed: 25057670]
  9. IOM; NRC. Meeting psychosocial needs of women with breast cancer. Hewitt M, Herdman R, Holland J, editors. Washington, DC: The National Academies Press; 2004.
  10. IOM; NRC. From cancer patient to cancer survivor: Lost in transition. Hewitt M, Greenfield S, Stovall E, editors. Washington, DC: The National Academies Press; 2006.
  11. National Breast Cancer Centre; National Cancer Control Initiative. Clinical practice guidelines for the psychosocial care of adults with cancer. 2003. http://www​.nhmrc.gov​.au/publications/synopses/_files/cp90​.pdf [PubMed: 15669019]
  12. NCCN (National Comprehensive Cancer Network). Distress management—version 1.2007. 2006. [accessed September 14, 2007]. http://www​.nccn.org/professionals​/physician_gls​/PDF/distress.pdf
  13. New Freedom Commission on Mental Health. Achieving the promise: Transforming mental health care in America. Final Report. DHHS Publication No. SMA-03-3832. Rockville, MD: Department of Health and Human Services; 2003.
  14. Pirl WF. Evidence report on the occurrence, assessment, and treatment of depression in cancer patients. Journal of the National Cancer Institute Monographs. 2004;32:32–39. [PubMed: 15263039]
  15. President’s Cancer Panel. President’s Cancer Panel 2003–2004 annual report. Bethesda, MD: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services; 2004. Living beyond cancer: Finding a new balance.
Copyright © 2008, National Academy of Sciences.
Bookshelf ID: NBK4018

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