Index

A

Academic Chronic Care Collaborative, 202, 319, 365

Academy of Certified Social Workers, 302

Academy of Psychosomatic Medicine, 313

Accreditation, 14, 18, 268, 270, 277, 278, 283, 284, 289, 290, 291, 293, 297, 298, 301-302, 303, 304-305, 307, 308, 309, 311-312, 320, 321-322, 341, 374, 382, 384, 397

Accreditation Council for Graduate Medical Education (ACGME), 245, 294, 311, 313

Outcome Project, 293

Activities of daily living (ADLs)

assessment instruments, 172 n.12, 174, 336 n.1

defined, 29

family and informal supports, 260-261, 262-263

fatigue and 28, 29, 104

limitations in performing, 3, 23, 26, 28, 29, 82, 359, 364

personal care services, 10, 82, 104, 230, 236, 262-263, 364

policies supporting service availability, 260-263

provider workforce, 285

Adenocarcinoma, 30 n.7

Adherence to treatment regimens.

See also Illness self-management

case management and, 192-193

coordination of care and, 259

emotional distress and mental illness and, 3, 5, 37, 51, 52, 55, 57, 59, 60, 63 n.7, 204

material and logistical resources and, 34, 103

as outcome measure, 238, 364

psychological distress from nonadherence, 59, 63, 69

rates of nonadherence, 58, 68

Adjustment disorder, 3 n.2, 30, 56, 67, 95, 167, 332

Adjuvant therapy, 58, 92, 162, 196

Administration on Aging, 96 n.5, 137, 249, 263, 365

Adolescent cancer patients

developmental problems, 32-33

psychopharmacological services, 95

remote services, 229

Adult survivors of childhood cancer

chronic illness, 27

cognitive impairment, 27-28

employment problems, 36

functional limitations, 2, 29

information resources, 110



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Index A Adenocarcinoma, 30 n.7 Adherence to treatment regimens. See also Academic Chronic Care Collaborative, 202, Illness self-management 319, 365 case management and, 192-193 Academy of Certified Social Workers, 302 coordination of care and, 259 Academy of Psychosomatic Medicine, 313 emotional distress and mental illness Accreditation, 14, 18, 268, 270, 277, 278, and, 3, 5, 37, 51, 52, 55, 57, 59, 60, 283, 284, 289, 290, 291, 293, 297, 63 n.7, 204 298, 301-302, 303, 304-305, 307, material and logistical resources and, 34, 308, 309, 311-312, 320, 321-322, 103 341, 374, 382, 384, 397 as outcome measure, 238, 364 Accreditation Council for Graduate Medical psychological distress from Education (ACGME), 245, 294, 311, nonadherence, 59, 63, 69 313 rates of nonadherence, 58, 68 Outcome Project, 293 Adjustment disorder, 3 n.2, 30, 56, 67, 95, Activities of daily living (ADLs) 167, 332 assessment instruments, 172 n.12, 174, Adjuvant therapy, 58, 92, 162, 196 336 n.1 Administration on Aging, 96 n.5, 137, 249, defined, 29 263, 365 family and informal supports, 260-261, Adolescent cancer patients 262-263 developmental problems, 32-33 fatigue and 28, 29, 104 psychopharmacological services, 95 limitations in performing, 3, 23, 26, 28, remote services, 229 29, 82, 359, 364 Adult survivors of childhood cancer personal care services, 10, 82, 104, 230, chronic illness, 27 236, 262-263, 364 cognitive impairment, 27-28 policies supporting service availability, employment problems, 36 260-263 functional limitations, 2, 29 provider workforce, 285 information resources, 110 0

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10 INDEX psychological distress, 167 American Board of Pediatrics (ABP), 294, quality of care and quality of life, 2, 6, 295 42, 361, 372, 395-396, 402-403, 406 American Board of Professional Psychology, research recommendations, 398, 400 305 screening for psychosocial health needs, American Board of Psychiatry and 167 Neurology, 295, 296 smoking cessation, 99 American Cancer Society (ACS), 4, 34, 89, Advance care planning, 157, 173 103, 108, 190, 194-195, 229, 230, Advocacy. See Patient advocates and 233, 267, 273, 303, 365, 385, 389, advocacy organizations 391, 392, 394, 396, 400, 403 Aetna, 250 Cancer Reference Information, 109 Affinity Health System, 243 Cancer Survivors Network, 125 Age of patients and caregivers, and need for Hope Lodge, 135 services, 25-26 I Can Cope Program, 119 Look Good . . . Feel Better Program®, Agency for Healthcare Research and Quality (AHRQ), 12, 13, 15, 18, 112, 119, 129 28, 29, 85, 195, 196, 198, 219, 239, Man-to-Man Program, 125 242, 270, 277, 321, 329-330, 340, Navigator program, 223, 247 341, 371, 390, 392, 394, 395, 397, Reach to Recovery program, 88, 118, 398, 405 126 CAHPS, 16, 17, 243, 245, 248, 271, Road to Recovery, 39, 136 272, 278, 339 American College of Physicians, 285 Questions Are the Answer Campaign, American College of Surgeons, 372, 385, 243, 245 391, 394 Alcoholics Anonymous, 89 Commission on Cancer, 13, 17, 200, Alliance for the Mentally Ill of Greater 270, 277, 340, 365 Kansas City, 226 American Institute of Cancer Research, 109, Alzheimer’s disease, 107 119 AMC Cancer Research Center, 127 American Medical Association, 250 n.5, America’s Health Insurance Plans, 17, 257, 289 340 American Nurses Association, 300 American Academy of Family Physicians, American Nurses Credentialing Center, 300 285 American Psychiatric Association, 30, 285, American Academy of Orthopedic Surgeons, 355, 356, 365 243 American Psychological Association, 251, American Academy of Pediatrics, 285 252, 286, 304, 306, 313, 355, 360, American Association of Colleges of 365 Nursing, 297, 298, 299 American Psychosocial Oncology Society American Association of Pastoral (APOS), 13, 17, 118, 206, 266, 277, Counselors, 309 318, 340, 355, 365, 385, 389, 391 American Board of Family Medicine American Society of Clinical Oncology (ABFM), 294 (ASCO), 6, 13, 17, 34, 165-166, Maintenance of Certification Program 239, 277, 285, 340, 365, 382, 385, for Family Physicians, 296 389, 391, 396 American Board of Internal Medicine People Living With Cancer, 115, 228 (ABIM), 293-294 Quality Oncology Practice Initiative, 271 Practice Improvement Module, 296 American Society of Pediatric Hematology/ American Board of Medical Specialties, 268, Oncology, 285 284-285, 295, 296 Americans with Disabilities Act, 10, 104, Maintenance of Certification initiative, 107, 264, 364, 393 243, 245, 248 Anthracycline chemotherapy, 102

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11 INDEX Antidepressants, 94, 95, 271 needs and services, 10, 83, 106, 355 Anxiety disorders, 3, 4, 7, 30-31, 38, 54, tobacco control, 98-100 56, 57, 58-59, 61, 68, 81, 88, 91, Behavioral Risk Factor Surveillance System 92, 94, 95, 156, 163, 167, 168, 170, (BRFSS), 16, 339 179, 203, 251, 300, 315, 332-333, Bladder Cancer Advocacy Network, 109, 357, 364, 381, 388 120, 126 Anxiolytics, 94, 95 Bloch Cancer Foundation, 110, 126 Appearance-related resources. See also Board of Oncology Social Work Prostheses and wigs Certification, 286, 303 information resources, 112, 116 Bone marrow transplantation, 28, 166, 168 AQA Alliance, 271 Brain Tumor Society, 110, 120, 127, 132 Arthritis, 4 n.3, 33 n.9, 37, 52, 55 n.3, 56, Brain tumors, 27, 30 n.7, 105, 110, 115, 65, 86, 96, 196, 336, 358 120, 127, 132 Asian and Pacific Islander National Cancer Breast cancer Survivors Network, 109 adherence to medical regimens, 58 Ask Me ™ initiative, 243, 245 and cognitive impairment, 27-28, Assessment. See Needs assessment 104-105 Association of American Medical Colleges, coping mechanisms, 60 202, 288, 289 delivery of care, 41, 192, 196, 197, 272 Academic Chronic Care Collaborative, educational interventions, 87, 123, 125, 319 234, 236, 385 Curriculum Management and emotional distress in caregivers and Information Tool, 291 family, 4, 31, 184 Medical School Objectives Project, 290 evaluation of interventions, 391 Association of Cancer Online Resources, exercise interventions, 102 109, 126, 365 and fatigue, 28 Association of Community Cancer Centers, information resources and needs, 110, 354 116, 117, 118, 122, 123, 178, 180, Association of Oncology Social Work 184, 186, 236 (AOSW), 34, 37, 38, 39, 286, 303, mortality, 41 365, 389 nutrition interventions, 100 Association of Pediatric Oncology Social physician–patient communication, 162 Workers, 286, 303 prostheses and wigs, 102, 103, 138 Association of Psychology Postdoctoral and and psychological distress, 4, 30, 31, Internship Centers, 306 166, 168 n.6, 357, 382 Association of Social Work Boards, 302 psychosocial interventions/services and, Association of State and Provincial 66, 87, 89, 90, 100, 110, 116, 117, Psychology Boards, 305 118, 122, 126, 127, 128, 331, 354, Asthma, 33 n.9, 37, 52, 56, 86, 196, 202, 357 233, 251, 258, 272, 319, 330, 336 quality-of-life assessment, 358-359 Attention-deficit disorder, 105 social supports and, 54, 66, 89, 90, 110, 126, 127, 128, 132, 380 treatment protocols, 24, 58, 162 B Brief Symptom Inventory-18©, 167, 169, 177 Beck Depression Inventory-Short Form, Brief Zung Self-Rating Depression Scale, 167, 177 167 Behavioral change interventions. See also Bristol-Meyers Squibb Foundation, 318 Cognitive-behavioral therapy British Columbia Cancer Agency, 170 availability, 262-263 Brown Cancer Center, 96 n.6 diet and physical activity, 100-102 Building Health Systems for People with effectiveness, 7, 98-102 Chronic Illnesses, 155, 201

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12 INDEX C demonstration projects, 248, 259, 384, 392 C3: Colorectal Cancer Coalition, 11 economics of, 238, 256, 258 C-Change, 312, 314-315 effectiveness, 98, 195-196, 198-199, Cancer. See also Adult survivors of 207, 225, 241 childhood cancer; specific sites information technology and, 197-198, and chronic illness, 26-27 201, 314, 395 prevalence, 2 mechanisms for, 155-157, 197-198, 203, psychological stress and incidence of, 222-223, 227, 228, 336-337 63-64 Medicare program, 172, 191, 246, 248, reach and influence, 2-4, 24-26 253-254, 255-258, 259, 274-275 survival rates, 2, 26, 66, 98, 100, 102, multidisciplinary team care, 155-157, 107, 192, 363, 375, 388, 403 195, 197 trajectories, 24, 25, 68 recommendations of prior reports, 379, Cancer Action, 226, 227, 229 381, 384, 386, 387, 391, 392, 395, Cancer Hope Network, 127 405 Cancer Information and Counseling Line, reimbursement policies, 12, 241, 242, 127 246, 248, 250, 253-258, 268, 274- Cancer Information Service, 229, 230, 233, 275, 276, 337, 384 235 research needs, 333, 336-337, 338 Cancer Institute (Australia), 192 as standard of care, 7, 8, 9, 15, 41, 153, Cancer Legal Resource Center, 136, 265 154, 158, 199, 203, 220, 222 Cancer Networks (UK), 203 workforce supply and, 287 Cancer Patient Need Questionnaire written care plans, 173 (CPNQ), 174-175, 177, 188 Care management. See Case management Cancer Patient Need Survey (CPNS), 174- Care/system navigators, 114, 190, 193-195, 175, 188 196, 197, 223, 247, 254, 257-258, Cancer Rehabilitation Evaluation System 260, 285, 287-288, 303, 314, 315, (CARES), 174-175, 188, 358 316, 334, 336, 337, 388 Cancer Research and Prevention Caregivers. See Families and caregivers Foundation, 110 Case management Cancer Support Network, 224-225 competency of providers, 299, 303, 315, Cancer Survival Toolbox, 164, 243, 245 316 Cancer Survivors Network, 125 components, 199 CancerCare, 4, 33-34, 39, 89, 103, 108, demonstration projects, 259 110, 118, 120, 128, 133, 134, 137, depression, 154, 191, 205 229, 230, 232, 233, 267, 318, 373 effectiveness, 191-193, 196, 197 Candlelighters Childhood Cancer free services, 135 Foundation, 110 for high-cost beneficiaries, 256, 259 Cardiovascular disease, 3 n.2, 4 n.3, 24, 27, model programs and examples, 155, 33 n.9, 35, 37, 52, 54, 55 n.3, 56, 157, 201, 205, 206, 207, 222 57, 58, 61, 62-63, 65, 94, 96, 100, recommendations of prior reports, 384 202, 233, 251, 330, 334, 336, 358 reimbursement policies, 246, 249, 256, Care coordination. See also Case 257, 259 management; Collocation and research needs, 227 integration of services; Referral for training, 316 psychosocial health services transportation issues, 39 competency of providers and, 287, 299, workforce, 285, 287 303, 310, 313, 314 Catholic Charities, 226 complexity of services and, 260 Center for Patient Partnerships, 236 definition, 195

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1 INDEX Centers for Disease Control and Prevention recommendations, 392 (CDC), 260, 263, 366, 380, 392, referrals to, 128, 134 394, 396, 404 Clinician and Group Survey Instruments, BRFSS, 16, 339 243 National Comprehensive Cancer Control Cochrane Collaboration, 191 Program, 200 Cognitive-behavioral therapy, 92, 93, 95, Centers for Medicare & Medicaid Services 96, 99, 100. See also Behavioral (CMS), 12, 13, 17, 18, 219, 239, change interventions 242, 259, 277, 321, 339, 340, Cognitive impairment 341, 372, 392. See also Medicaid; in adults, 27-28, 104-105, 331 Medicare breast cancer and, 27-28, 104-105 Central nervous system cancers, 36 in children, 27, 105-106 Charlson Comorbidity index, 168 n.6 effectiveness of services, 104-106, 331 Chemotherapy, 3, 24, 26, 28, 58, 102, 105, emotional distress/mental illness and, 5, 196, 227, 228, 251, 271 58-59 Child care services, 34, 102, 132, 133, 172 services to address, 10, 82, 104-106, n.12, 194, 336 n.3, 354, 357 264-265 Children. See Adolescent cancer patients; Collaborative care model, 204-205 Adult survivors of childhood cancer; Collaborative Care of Depression, 156 Pediatric cancer patients Collocation and integration of services, 158, Children’s Hospital of Philadelphia, 307 190, 195 n.17, 196, 201 Chronic Care Model, 155, 201-202, 358, approaches, 220-225 373 communication between providers, 193, Chronic Disease Self-Management Program, 221 96 economics of, 238 CINAHL (Cumulative Index to Nursing and education and training of clinicians and, Allied Health Literature), 15, 84, 85, 14, 41, 283, 310, 320, 322 330, 363 effectiveness, 193, 221, 241, 336-337 Clinical practice guidelines mental health clinicians, 13, 268 Australian Clinical Practice Guidelines recommendations of prior reports, 384, for the Psychosocial Care of Adults 399 with Cancer, 156, 203, 354, 380, and reimbursement policies, 241, 267- 381, 383, 385, 389 268, 275, 276-277 inadequacies in, 41 Colon cancer, 24, 30 n.7, 94, 110, 127 incorporating tested interventions in, 92 Colon Cancer Alliance, 110, 127 NCCN Distress Management, 155, 169, Colorectal cancer, 28, 110, 194, 272 202-203, 356, 357, 379, 380, 382, Colorectal Cancer Network, 110 386, 389, 391 Commission of Rehabilitation Counselor needs assessment, 171 n.10 Certification, 308 psychopharmacological services, 95 Commission on Collegiate Nursing recommendations of prior reports, 379- Education, 297 383, 385, 386, 389, 391, 395, 398 Commission on Rehabilitation Education, Clinical trials 308 design, 89, 91, 93, 94, 392 Commission on the Accreditation of evidence of intervention effectiveness Counseling and Related Educational from, 92, 94, 101 Programs, 308 information on, 109, 110, 111, 112, Communication. See Patient–provider 113, 114, 115, 116, 117, 134 communication needs assessment instruments, 174 Communities palliative care in, 403 effects of failure to address psychosocial needs of patients on, 67, 68

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1 INDEX D Community Cancer Centers Pilot Program, 195, 198, 403 Dane County Latino Health Council, 236 Community care, 6, 44, 374 Dartmouth-Hitchcock Medical Center, 168 Community Tracking Study Household n.6 Survey, 35 Decision making on treatment Comprehensive Breast Cancer program, aids, 15, 86, 87, 112, 113, 118-119, 168 n.6 121, 123, 162-163, 164, 235, 311 Comprehensive Health Enhancement competency of professional, 298, 310, Support System (CHESS), 232-233, 314, 317, 333, 337 235-236 coordination/integration of care and, Congestive heart failure, 27, 196, 202 192, 198, 201, 204, 205 Consolidated Standards of Reporting Trials, older adults, 26 91, 94 and outcomes, 161-162, 358, 384-385 Consumer Assessment of Healthcare patient preferences, 11, 26, 86, 160, Providers and Systems (CAHPS), 16, 161, 176, 184 17, 243, 245, 248, 271, 272, 278, patient–provider communication and, 339 159, 160-162, 163, 238, 243, 271, Coping skills 333, 337 avoidant, 60-61 support services, 85, 86, 203, 233, 235, and health behaviors, 52, 57, 58, 405 60, 61 Definitions. See Nomenclature and information needs and resources, standardization 10, 38, 82, 87, 113, 115, 116, 117, Delivery of psychosocial health services. See 119, 121, 123, 364 also Clinical practice guidelines interventions, 10, 82, 88-95, 96, 106, ambulatory care setting, 13, 18, 41, 44 127, 309 n.19, 198, 221, 224, 228, 243, 251, logistical resources and, 39 270, 271, 272, 277, 284, 292, 337, and morbidity and mortality, 64, 66 340 needs assessment, 174, 188, 251, 336 approaches, 220-236 n.1 common components, 154, 155-157, physiological effects, 66, 334 242 positive mechanisms, 60 coordinating psychosocial and provider competency issues, 292, 300, biomedical care, see Care 301, 318 coordination psychological stress and, 5, 52, 54-55, for depression, 204-206 60, 88-95 empirically validated models, 153-159, screening instruments, 166, 172 n.12 201-207 social supports and, 53, 88, 89, 90, 127 examples, see Standard of care with treatment and cancer effects, 24-25, follow-up, 8, 99, 116, 154, 155-157, 26, 357 158, 169, 172, 173, 194, 197, 199, Coronary artery disease, 62, 65 201, 204, 205, 206, 222, 223, 226, Council on Social Work Education, 301, 227, 228, 229, 230, 232, 242, 246, 302, 303 255, 256, 257, 258, 271, 275, 375, Counselors 382, 383, 386, 387, 392, 395, 396 licensed, 93, 226, 283, 284, 286, 303, identifying patients with needs, 83, 153, 304 n.18, 308 154, 164-173, 242, 246, 249-253; pastoral, 284, 286, 309, 374 See also Needs assessment; Screening peer, 110, 127 psychosocial problems workforce, 286 interventions for, see Psychosocial CureSearch, 110 interventions

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1 INDEX linking patients to services, 83, 98, 190- and financial pressures, 4, 33 n.9, 55 195, 242, 246; See also Care/system n.3, 68 navigators; Case management; and functional impairment and Collocation and integration of disability, 5, 57 services; Referral for psychosocial and health behaviors, 5, 37, 52, 57, 58, health services 59, 204 with local resources, 98, 225-229 health services for, 69, 88, 95, 196, 301 monitoring progress, 16-18 and immunocompetence, 63, 64, 65 patient–provider communication, 159- insurance coverage, 250, 256, 268 164, 243-249 medications, 94-95 payment and policy environment and, 6, and morbidity and mortality, 52, 61-62, 12-13, 41; See also Reimbursement 63, 64 policies patient–provider communication and, planning care, 157, 173, 246 161, 315 policy supports, see Policy supports and and physical symptoms, 5, 57, 62 constraints prevalence in cancer patients, 1, 30, 56- recommended demonstration and 57, 62 evaluation of approaches, 12, 17, prevention, 95 238-239 provider failure to recognize and remote providers, 229-236 address, 5, 23, 40, 165 research needs, 93-94, 333-337 psychological stress and, 1, 54, 61-62 self-management support, see Illness quality-of-care measures, 270, 271, 272, self-management 363, 364 standard-of-care recommendation, recommendations of prior reports, 372, 199-200 381, 388, 392 supportive and palliative care for adults, research methods and needs, 332-333, 203-204 392 unifying model for, 7-8, 154, 158-199 screening and assessment, 154, 156, Department of Health and Human Services 157, 165, 166, 167, 168, 169, 170, (DHHS), 16, 17, 18, 321, 339, 340- 192, 203, 204, 226, 247, 250, 354, 341, 365, 366, 384, 397 381, 392 Department of Veterans Affairs, 247, 373 social supports and, 54 Depression in survivors post-treatment, 388 in caregivers and family members, 4, 31, treatment models for primary care 32, 67 settings, 204-206 case management, 191, 205 Derdiarian Informational Needs Assessment chronic diseases and, 3 n.2, 56, 61-62 (DINQ), 178-179, 189 and cognitive impairment, 5, 58-59, 105 Developmental problems, 32-33 collaborative care model, 204-205 Diabetes, 3, 4, 24, 33 n.9, 35, 37, 52, 55 community effects of, 68 n.3, 56, 58, 65, 86, 94, 96, 191, 196, competency/expertise of clinicians, 267- 198, 202, 251, 258, 259, 272, 319, 268, 300, 301 330, 334, 336, 358 and coping abilities, 54, 57 Diabetes Self-Management Assessment Tool, delivery of services for, 94, 191, 196, 334 204-206, 363 Diet and nutrition, 5, 15, 52, 57, 58, 60, and disease development, 61-62, 64 61, 98, 100-102, 109, 111, 114, 117, effectiveness of services and 119, 169, 338, 355 interventions, 7, 81, 90, 91, 92-93, Disability 94-95, 154, 191, 196, 204, 206, age and, 26 332-333 competency of service providers, 299, 305, 401

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1 INDEX delivery of support services, 201, 404 licensure, 14, 254, 255, 283, 285, 286, and depression, 5, 57, 62 289, 291-292, 296, 298, 300, 301, emotional distress and mental illness 302, 303, 304, 305, 306, 307, 308, and, 57, 59-60 309, 312, 316, 320, 321-322, 374 and employment, 389 monitoring progress in, 18, 291, 309, financial assistance, 10, 266, 364 320, 340-341 financial stress and, 55 recommendations, 13-14, 18, 283-284, formal support services, 10, 82, 104, 320-322 107, 108, 135, 264, 265, 266, 364 specialty certification, 14, 18, 225, functional, 3, 5, 26, 52, 59-60; See also 245, 248, 268, 283, 284, 285, 286, Activities of daily living 293-294, 296, 300-301, 302-303, legal protections, 10, 82, 104, 107, 264, 305-306, 307, 308, 309, 316, 320, 265, 364, 393 321-322, 341, 390, 391 likelihood in cancer patients, 23, 24-25, teaching practices, 316-319 26-28, 68 Effectiveness research peer support programs, 89 agenda, 330-333 psychosocial factors, 2, 4, 5, 55, 57, behavioral change interventions, 7, 59-60 98-102 self-management programs, 96, 358 challenges, 330-331 treatment-related, 26, 68 cognitive and educational assistance, Discrimination, 33, 356, 388 104-106 Disfigurement, 33, 89 committee approach, 83, 353-370 Distress Thermometer, 166-167, 168-169, CONSORT criteria, 91, 95 170, 230, 334 counseling and psychotherapy, 91-94 family and caregiver support, 106-107 identifying effective services, 331, 360- E 363, 365-366 on information support, 85-87 Education. See Informational support; legal protections and services, 107-108 Patient and family education material and logistical resources, 7, Education and training in biopsychosocial 102-103 approaches. See also specific types of mental health therapies, 7, 81, 88-95, proiders 154, 191, 196, 204, 206, 332-333 accreditation and licensure standards, needs, 93-94, 95 283, 289-290, 291-292, 297, 298, outcomes of interest, 90, 91, 101-102, 301-302, 304-305, 308, 311-312 107, 363-365 barriers to, 40-41, 308, 310-319 on peer support groups, 38, 84, 88-90, communication skills, 163-164, 311, 99 315, 317-318 personal care services, 104 core competencies, 290-291, 297, 299, populations and scenarios, 331-332 307-308, 311-316, 319-320 psychopharmacological services, 94-95, current practice environment and, 332-333 310-311 recommendations, 12, 17, 85, 238-239 faculty needs, 316 robustness of methods, 332-333 gender, ethnic, and behavioral self-management and self-care considerations, 292 interventions, 95-98 interactive, multicomponent program, taxonomy and nomenclature issues, 318 83-85 interdisciplinary, experiential, statewide Electronic health records, 197-198 program, 318-319 EMBASE, 15, 84, 85, 330, 363 learning collaborative, 319

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1 INDEX Emotional distress and mental illness. benefits of, 28, 101-102, 106-107 See also Coping skills; Depression; and depression, 5, 57 Psychological stress information resources, 109, 114, 224 and cognitive impairment, 5, 28, 58-59 interventions, 10, 15, 95, 98, 100-102, economic costs of, 68 106-107, 224, 226, 338 effects on cancer patients, 56-60 as performance measure, 271 financial pressures and, 56 psychological stress and, 52, 60, 61 and health behavior, 3, 5, 57-58 as response to cancer diagnosis, 57-58 insurance coverage, 261-267 and motivation, 5, 59-60 F needs and services, 10 physical stressors and, 24-25 Facing Our Risk for Cancer Empowerment, screening for, 168 110, 127 and somatic problems, 5, 24-25, 28, 56- FAMCARE, 182-183, 189 60, 94 Families and caregivers Emotional support. See also Peer support depression in, 4, 31, 32, 67 programs; Psychotherapy and effectiveness of services, 106-107 counseling morbidity and mortality in, 4, 32, 67 beneficial effects, 8, 53, 54, 66, 88-95, needs assessment, 172, 182-187 107 nomenclature, 43 competency of providers, 314 provider communication with, 159 counseling and psychotherapy, 10, 91-94 psychological stress in, 31-32, 66, 67, 98 defined, 53 screening instruments, 169-170 effectiveness of services, 7, 81, 88-95, support services, 10, 82, 106-107, 137, 154, 191, 196, 204, 206, 332-333 262-263 for families and caregivers, 106, 107 value of nonreimbursed care, 21-32, formal services, 92, 93, 94, 158, 231 260-261, 263, 265, 267 free services, 125-132 Family and Medical Leave Act, 10, 82, 104, health services, 82, 83, 241 107, 264, 364, 393 informal sources, 83, 90, 261 Family Inventory of Needs, 184-185, 189 information resources, 114, 115, Fatigue in cancer patients 125-132 ADL limitations, 28, 29, 104 pharmacological therapies, 10, 94-95 assessment instruments, 167, 224, 226, remote providers, 229, 232-233, 235 335 Employee Assistance Programs, 249 assistance services, 104 Employment changes, 3, 10, 29, 33, 34, 35, caregiver’s mental health and, 4, 31 36-37, 39, 57, 67-68, 82, 114, 314, competency of service providers, 300 359, 365, 375, 383, 385 definition of, 28 Empowering Older People to Take Control emotional distress and mental illness of Their Health Through Evidence- and, 5, 24-25, 28, 56-60, 94 Based Prevention Programs, 96 n.5, information resources, 113 249 and management of illness and health, End-stage renal disease, 58, 59, 206 37 European Organization for Research and mechanisms and manifestations, 28 Treatment of Cancer Quality of Life pain and, 29 Questionnaire, 358 physical activity and, 101 Examination for Professional Practice in prevalence rates, 28 Psychology, 305, 307 psychosocial effects of, 28, 29, 364 Exercise/physical activity, 355, 358 treatment/management of, 28, 92, 96- assessment/monitoring, 82, 169, 364 97, 101, 113, 336, 358, 364, 372

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1 INDEX fertileHope, 111 incentives for effective delivery of Financial stress. See also Health insurance services, 13, 16, 41 clinical practice guidelines, 203 legislation, 267 and illness management, 55 monitoring progress, 17 medical debt, 33-34, 39, 55 recommendations, 12-13, 17, 275-277 problems of patients and families, 3, 4, research needs, 337 33-34, 37, 55-56 resources, 10, 85, 108, 110, 111, 114, support services, 7, 10, 34-35, 82, 85, 264-265 108, 110, 111, 114, 119, 132-135, Health maintenance organizations, 190, 250 194, 227, 229, 264-265, 266-267 Health Resources and Services uninsured patients, 35, 55 Administration, 321, 373, 396, 406 Functional Assessment of Cancer Therapy, Health services. See Psychosocial health 358 services Health services research agenda comprehensive illness and wellness G management interventions, 336 improving patient–provider partnership, Geisinger Health System, 243 333 Gilda’s Clubs, 89, 120, 128, 229 linking patients with services and coordinating care, 336-337 needs assessment, 335-336 H reimbursement arrangements, 337 screening tools, 334-335 Head and neck cancers, 30 n.7, 36, 99, 116, Healthplan Employer Data and Information 131 Set (HEDIS), 271 Health behaviors. See also Adherence to Hershey Medical Center, 318 treatment regimens; Behavioral Hill-Burton Program, 133, 267 change interventions; Diet and HIV/AIDS, 3, 52, 56, 57, 58, 59, 60, 61, nutrition; Exercise/physical activity 63, 89, 90, 93, 191, 233 coping skills and, 60 Hodgkin’s disease, 30 n.7 depression and, 5, 37, 52, 57, 58, 59, Home Care Study-Caretaker Form 204 (HCS-CF), 184-185, 189 financial stress and, 34, 55 Home Care Study-Patient Form (HCS-PF), screening for, 168 176-177, 188 self-efficacy and, 38, 59, 66, 87 Home Caregiver Need Survey (HCNS), 184- Health care providers. See also Education 185, 189 and training in biopsychosocial Hope Lodge, 135 approaches; Workforce; specific types Hospital Anxiety and Depression Scale of proiders (HADS), 167, 168, 169 information resources for, 115 Housing, 135 knowledge of psychosocial resources, 5-6, 7, 11 recommendations for, 10-11, 237 I Health insurance. See also Reimbursement policies I Can Cope Program, 119 absent or inadequate coverage, 3, 4, 34, Illness self-management 37, 55-56, 237, 261-267 case management and, 192-193 and access to care, 261-268 definitions, 84, 95, 195, 357-358 accreditation standards, 268 effective models of care delivery, 96-97, capitated payment, 257 155-157, 201, 202, 204, 205, 221, and delay in treatment, 34 223, 224, 313, 376 and emotional/physical well-being, 56

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1 INDEX health behaviors and, 169 Instrumental support, defined, 53 informational support and, 86, 95, 231- Insulin-like growth factor, 102 232, 233 Insulin-like growth factor binding protein need for services, 10, 364 3, 102 patient–provider communication and, 37 Interferon, 95 policy support for, 248, 258, 259 International Association of research needs, 336 Laryngectomees, 111 screening tools and approaches, 334 International Myeloma Foundation, 111, self-efficacy and, 38, 59, 88, 89, 95 121, 123 social supports and, 55 Stanford model, 96, 358 J support programs, 10, 38, 82, 86, 95- 98, 106, 195, 204, 221, 223, 224, Joint Commission on Accreditation of 249, 275, 357-358 Healthcare Organizations, 13, 18, Immune function, 5, 51, 52, 54, 61, 64-66, 274, 277, 278, 340, 397 101, 333 Speak UpTM initiatives, 245 Improving Chronic Illness Care program, 202 Improving Mood—Promoting Access to K Collaborative Treatment for Late-Life Depression (IMPACT) project, 157, Kaiser Permanente, 243, 373 205-206 Kansas City Cancer Center, 225-227 Improving Supportive and Palliative Care Kansas City Community Foundation, 227 for Adults with Cancer, 156, 203-204 Kansas City Free Health Clinic, 226 Income. See Employment changes; Financial Kidney Cancer Association, 111, 121 stress Individual Cancer Assistance Network, 318 L Individuals with Disabilities Education Act, 107, 265 Lance Armstrong Foundation, 111, 128, Information and Support Needs 134, 230, 273, 274, 366 Questionnaire, 186-187, 189 Legal Information Network for Cancer, 265 Information Needs Measure, 180-181, 189 Legal protections and services, 10, 38, 82, Informational support. See also Patient and 104, 107-108, 136, 159, 264-265, family education 356, 359, 383, 385, 388, 389 availability, 81, 82, 85-86, 109-117, Lehigh Valley-Allentown Cooperative 262-263 Cancer Center, 318 benefits of, 53, 86, 87, 95 Leukemia, 24, 30 n.7, 36, 89, 112, 121, decision-support tools, 87, 112 128, 133 definition, 53 acute lymphoblastic, 27, 105, 251, 267, dissatisfaction with, 5, 37-38 366 effectiveness of, 38, 85-87 Leukemia & Lymphoma Society, 89, 112, free sources on psychosocial health 121, 128, 133, 267, 366 services, 81, 82, 85-86, 109-117 Liaison Committee on Medical Education Internet, 87, 109-117 (LCME), 289-290 methods of delivery, 38, 86-87, 88 Liver cancer, 30 n.7 needs, 3-4, 10, 11, 37, 38, 82, 85, 87 LIVESTRONG Survivorship Center of for providers, 11, 197-198, 201, 314, Excellence Network, 274 395 LieStrong® Survivorship Notebook, 227 Institute for Healthcare Communication, Living Beyond Breast Cancer, 118, 122, 128 164, 243, 245 Living with Breast Cancer program, 236 Institute for Healthcare Improvement, 202

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20 INDEX Long-term care, 201 Medical supplies, 262-263 Look Good . . . Feel Better Program®, 112, Medicare. See also Reimbursement policies 119, 228 assistance in negotiating care from, 135 Lung cancer, 28, 30 n.7, 94, 98, 112, 114, care coordination program, 172, 191, 129, 330 257-258, 259 Lung Cancer Alliance, 112, 129 Care Management for High-Cost Lung disease, chronic, 37, 52, 56, 57, 58, Beneficiaries, 259 96, 336, 358 claims paid, 253 Lustgarten Foundation for Pancreatic coverage for psychosocial services, 13, Cancer Research, 113 17, 35 n.12, 104, 228, 241, 249-250, Lymphoma, 27 n.4, 28, 30 n.7, 36, 89, 112, 257-258, 260, 261, 262, 264, 266, 118, 121, 122, 128, 129, 133, 134, 340 136, 366 Health Outcomes Survey, 272 Lymphoma Foundation of America, 112, Health Support Demonstration, 259 118, 122, 129, 136 monitoring quality of care, 397 Lymphoma Research Foundation, 112, 122, payment rates, 254, 256 129, 134 Physician Group Practice Demonstration, 259 prescription drug benefit, 393 M relative value units, 255 technology assessment and coverage, MacArthur Initiative on Depression and 242 Primary Care, 205 Melanoma, 30 n.7, 97, 113, 271 Man-to-Man Program, 125 Melanoma Research Foundation, 113 Management of illness. See Illness Memorial Sloan-Kettering Cancer Center, self-management 313, 317, 373 Management of psychosocial stressors Men Against Breast Cancer, 123 health care system deficits, 40-42 Mental health providers. See also information and education deficits, Counselors; Psychologists 37-38 education and training, 303-309 knowledge and skills of health workforce supply, 288 professionals and, 37-38 Mental illness. See Depression; Emotional logistical resources, 39-40 distress and mental illness obstacles to, 37-42 Metabolic syndrome, 102 Mastery, 52, 107 Methylphenidate, 105 Material and logistical resources, 7, 10, 82, Metro CARE, 226 102-103, 137, 168, 194, 227. See Moffitt Cancer Center, 268, 373 also Financial stress; Transportation Moores Cancer Center, 222-224, 229 for patients and families Motivation, 5, 28, 57-58, 59-60, 88, 206, Maternal and Child Health Programs for 369 Children with Special Health Care Mucositis, 97 Needs, 247 Multiple Myeloma Research Foundation, Mayo Clinic, 373 113, 123 Medicaid, 13, 81, 103, 104, 228, 242, 243, 244, 248, 262, 264, 266 Early Periodic Screening, Diagnosis, and N Treatment, 246, 264 Medical Outcomes Short Form (SF-8), 168 National Association of Social Workers, n.6 286, 302, 303, 318 Medical Outcomes Study, 358 National Board for Certified Counselors, 308

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21 INDEX National Breast Cancer Centre (Australia), National Institutes of Health, 6, 15, 16, 17, 95 18, 23, 43, 85, 321, 329, 338, 340, National Cancer Control Initiative 341, 353, 355, 372, 394, 399 (Australia), 92, 95 Medical Scientist Training Program, 401 National Cancer Institute, 11, 12, 13, 16, Office of Behavioral and Social Science 17, 113, 160, 161, 163-164, 219, Research, 42, 289 237, 239, 242, 260, 263, 277, 330, PROMIS initiative, 335 338, 339, 385, 387, 388, 389, 390, National Latino Cancer Research Network, 391, 392, 394, 395, 396, 397, 398, 236 399, 400, 403 National League for Nursing Accrediting Cancer Information Service, 229, 230, Commission, 297, 298 233, 235 National Library of Medicine. Medical Community Cancer Centers Pilot Subject Headings (MeSH), 15, 24 Program, 195, 198, 403 n.3, 84, 85, 330, 363 Metathesaurus, 84 National Lung Cancer Partnership, 114 Outcomes Research Branch, 273 National Lymphedema Network, 114 Patient Navigation Research Program, National Ovarian Cancer Coalition, 114, 194-195 129 Physician Data Query, 204 National Prostate Cancer Coalition, 114 Quality of Cancer Care Initiative, 200 National Quality Forum, 13, 17, 270, 272, Research Symposium on Consumer– 274, 277, 278, 340, 366, 397 Provider Communication, 245 National Survey of U.S. Households website, 233 Affected by Cancer, 5-6, 34, 35, 38, National Cancer Plan (UK), 203 40, 55 National Coalition for Cancer Survivorship, Nausea/vomiting, 92, 96 114, 123, 366, 385 Need Evaluation Questionnaire, 176-177, National Committee for Quality Assurance, 188 13, 17-18, 274, 277, 278, 340, 397 Need Satisfaction Scale, 186-187, 189 National Comprehensive Cancer Network, Needs assessment 12, 17, 95, 154, 200, 277, 340, 366 caregivers, 182-187 Clinical Practice Guidelines for Distress case management, 192 Management, 155, 169, 202-203, definition, 171 356, 357, 379, 380, 382, 386, 389, domain comparison across instruments, 391 173, 188-189 Distress Thermometer, 166-167, 168- effectiveness, 154, 165, 172 169, 170, 230, 334, 357 follow-up, 154, 169, 172, 199 National Council Licensure Examination, instruments, 172-173, 174-189, 335-336 298 model programs, 156, 157 National Council of State Boards of and patient–provider communication, Nursing, 298, 301 172 National Family Caregiver Support policy supports and barriers to, 247, Program, 137 251-253 National Health Care Quality Report, 272 research needs, 173, 335-336 National Health Information Infrastructure, screening contrasted, 171 197 stage-specific, 180-183 National Health Interview Survey, 27, 29, Needs Near the End-of-Life Care Screening 36, 334 Tool (NEST), 182-183, 189 National Health Service (UK), 197 Needy Meds, 114 National Institute for Clinical Evidence, New Freedom Commission on Mental 172, 203 Health, 288

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22 INDEX New York Legal Assistance Group, 107, Older Americans Act, 81, 104, 247 108 Oncology Nursing Certification Nomenclature standardization Corporation, 300 committee definitions, 43-44, 359-360, Oncology Nursing Society, 13, 17, 34, 277, 363 286, 340, 366, 382, 385, 389, 391 conceptual framework, 355-359 Optimism, 52, 60 confounding in research, 44, 363 Oral Cancer Foundation, 115, 130 defining psychosocial services, 43-44, Osteopenia/osteoporosis, 100 353-360 Outcome Project, 293 DMS-IV-TR, 355-357 Ovarian cancer, 66, 114, 115, 129 in effectiveness research, 83-85, 363 Ovarian Cancer National Alliance, 115 existing definitions, 254-255 Overweight/obesity, 100 face validity of, 359 “fatigue,” 29 P health-related quality of life, 358-359 illness self-management programs, 97, PACE (Patient Assessment, Care, and 98, 357-358 Education), 169 monitoring progress in, 18 Pain NCCN, 357-358 age and coping with, 26 recommendation, 14-15, 18, 85, 98 assessment of, 167, 172 n.12, 182, 188- North American Brain Tumor Coalition, 189, 224, 226, 251, 271, 314-315, 115 335, 336 n.1, 357 Northland CARE, 226 competency and education of health Nurse Licensure Compact Agreement, 300 professionals, 300, 301, 306, 310, Nurse practitioners, 220, 225, 226, 227, 314, 318 250 n.5, 254, 255, 286, 297, 300, effectiveness of interventions, 92, 96, 301, 388 364 Nurses emotional distress and mental illness associate and baccalaureate education, and, 5, 25, 30, 57, 59, 62, 231 297-298 and fatigue, 29 delivery of interventions, 41 n.18, 89, information resources, 86, 113, 224- 96, 97-98, 99, 190, 192, 194, 224, 225, 231 226 and limitations in ADLs, 29, 104 faculty, 316 and management of stressors, 37, 38 licensure, 298, 300 in pediatric patients, 251 registered, 296-301 psychosocial effects, 25, 29 reimbursement policies, 247, 249, 254 treatment/management, 29, 60, 86, 92, specialty certification and continued 96-97, 107, 113, 196, 220, 224-225, competency, 300-301 300, 301, 306, 310, 314, 336, 358, workforce, 286, 288 372 Nursing care, 106 Palliative care, 6-7, 43, 114, 180, 182, 183, Nutrition. See Diet and nutrition 203, 206, 224, 296, 303, 313, 355, 399, 403 Palliative Care Assessment, 180-181, 189 O Pancreatic cancer, 30 n.7, 113, 115, 119, Older adults 124, 130 communication with providers, 159, 162 Pancreatic Cancer Action Network, 115, depression, 56-57 119, 124, 130 developmental problems, 32 Partners in Care, 157, 206 immune response to stress, 65 Patient Advocate Foundation, 128, 134, need for services, 25-26, 254 135, 267

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2 INDEX Patient advocates and advocacy Pediatric cancer patients. See also Adult organizations, 11, 89, 164, 193, survivors of childhood cancer 237, 238, 257. See also indiidual cognitive impairment, 27 communication with providers, 159 organizations Patient and Caregiver Education program, developmental problems, 32-33, 332 113 and health outcomes, 161-162 Patient and family education. See also information resources, 110 Informational support psychological stress in families and free services, 119-125, 229 caregivers, 31, 59, 169-170 interventions, 10, 87, 89, 97, 10, 106, PTSD/PTSS in, 54 194, 227, 232, 234 research needs, 331, 332 monitoring progress in, 16-17, 339 school re-entry and reintegration providers, 220 programs, 105-106, 265, 331 recommendations, 11, 237-238 screening and needs assessment, 169- reimbursement policies, 248 170, 246 Patient and Liaison Services, 115 social functioning, 33 Patient Care Monitor, 166, 169, 170, 224, Peer support programs 334 availability, 4, 10, 38, 82, 262-263, 364 Patient Health Questionnaire, 167, 168 n.6, competency of providers, 312 226, 250 components and uses, 88-90 Patient information. See Informational counseling services, 98, 99, 118, 374 support defined, 88 Patient Information Need Questionnaire, delivery of services, 232 178-179, 189 effectiveness, 38, 84, 88-90, 99 Patient Navigation Research Program, emotional support services, 126, 127, 194-195 128, 129, 130, 131 Patient Needs Assessment Tool, 176-177, information resources, 38, 110, 112, 188 232 Patient–provider communication. See also nomenclature/terminology issue, 84 Decision making on treatment outcome measures, 89 barriers to, 40-41 provider involvement, 89 coached care, 162 provider knowledge of and referrals to, cross-cultural, 244-245, 315 38, 232 current, 160-161 provider workforce, 284 and depression, 161, 315 research needs, 90 effective model for, 159-164 transportation issues, 39, 55 and illness self-management, 37, 97 virtual, 87, 90, 232 importance, 161-162 Pennsylvania Cancer Control Program, 318 interactive videos, 162-163 People Living With Cancer, 115, 228 interventions to improve, 97, 114, 162- Performance measurement 163, 243-245 adopted/endorsed, 271-272 key aspects, 159-160 ensuring use of, 270, 272 needs assessment and, 172 as incentive, 274 passive patients, 161 infrastructure, 274 performance measures, 272 instruments and initiatives, 243, policy support, 243-245, 248-249 269-272 poor or lack of, 3-4, 5, 37, 38, 40 leadership role, 273-274, 278 promoting behavioral change, 98, 99 mental health care, 269-270 remote resources, 230, 231 patient–provider communication, 243 research needs, 161, 333 monitoring progress in, 340 training providers in, 163-164, 311, in quality oversight, 13, 18, 242, 269- 315, 317-318 274, 277, 340

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2 INDEX recommendations, 13, 17-18, 277-278 Pregnant With Cancer, 130 reimbursement linked to, 12, 242 President’s Advisory Commission on Personal care services, 10, 82, 104, 230, Consumer Protection and Quality in 236, 262-263, 364 the Health Care Industry, 276 Personal health records, 198 President’s Cancer Panel, 40 Pew Health Professions Commission, 297 Press-Ganey Oncology Outpatient patient Pharmacotherapies, 94-95, 105, 114, 227, satisfaction survey, 223 262-263, 268, 271, 332-333 Primary Care PTSD Screen, 167, 168 n.6 Phone Buddy Program, 129 PRO-SELF program, 97 Physical stressors, cancer-induced. See also Problem Areas in Diabetes (PAID), 334 Disability; Fatigue in cancer patients; Projects in the Promoting Excellence in Management of psychosocial End-of-Life Care Program, 157, stressors; Pain 206-207 health impairment, 26-28 Prostate cancer, 24, 30 n.7, 55-56, 89, 94, limitations in ADLs, 3, 29 97, 114, 115, 117, 124, 125, 131, screening for, 169 178-179, 188, 235, 330 Physician assistants, 220, 250, 254, 388 Prostate Cancer Foundation, 115 Physicians. See also Patient–provider Prostate Cancer Needs Assessment, 178- communication 179, 188 continuing education and certification, Prostheses and wigs, 34, 85, 102, 103, 138, 18, 164, 296 223, 233 family medicine, 294 Psychological stress. See also Emotional graduate medical education, 164, distress and mental illness 293-296 adherence to treatment regimen and, 59, internal medicine and oncology 63 n.7, 69 subspecialty, 293-294 chronic, 65 medical licensure, 291-292 clinician awareness of, 6 pediatric training programs, 294-295 and disease, 61-64 psychiatry residency program, 295-296 in families and caregivers, 31-32 supply, by specialty, 284-285 manifestations in patients, 30-31 undergraduate medical education, measures of, 63 n.7 289-291 and morbidity and mortality, 32, 52, 53- Picker Institute, 321 54, 61-62, 63, 64, 67, 88-89 Planet Cancer, 115, 130, 232 psychosocial resources and, 52, 54, 60, Policy supports and constraints. See 332 also Performance measurement; physiological effects, 52, 61, 64-66 Reimbursement policies prevalence, 30 for availability of services, 260-268 screening for, 6 on identifying psychosocial needs, Psychologists 249-253 accreditation, 304-305 information resources on, 115 certification, 305-306 for interventions, 246-259 competencies and curricula, 307 on patient–provider communication, graduate training, 306 243-245, 248-249 licensure, 305 on self-management of illness, 258-259 pre/postdoctoral internships, 306-307 Post-traumatic stress disorder, 3, 30, 31, 54, reimbursement, 251-253 56, 95, 167, 168 n.6, 332-333 self-assessment model, 313 Post-traumatic stress symptoms, 30, 31, 54, workforce, 286 56, 167 Psychoneuroimmunology, 5, 64-65 Psychosocial Assessment Tool©, 169-170 Preferred provider organizations, 250

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2 INDEX Psychosocial health services. See also child and adolescent, 88 n.1, 108-109 Collocation and integration of cognitive-behavioral, 92, 93 services; Delivery of psychosocial competency of providers, 94 health services; Effectiveness effectiveness, 91-94, 106 research; Psychosocial interventions; family and couples, 93 free programs, 118 indiidual serices availability, 7-8, 81-83, 108-138, 260- interpersonal, 92-93 261, 262-267, 379-380 remote resources, 93-94 deficiencies, 5-6 research needs, 93-94 definition, 9, 43-44, 69, 82-83, 359-360 supportive, 92-93, 98 diversity, 82-83 utilization rates, 192 evidence of, effectiveness 7, 81, 85-108 PsycINFO, 15, 84, 85, 330, 363 examples of needs and services, 10 PTSD Checklist-Civilian Version, 167 free programs, 118-138 importance, 8-9, 66, 68-69 Q interventions to secure services, 69; See also Care/system navigators; Quality improvement initiatives, 200, Case management; Referral for 206, 268. See also Performance psychosocial services; Screening measurement psychosocial problems Quality of Cancer Care Initiative, provider knowledge and attitudes about, 200 5-6, 7, 11, 40, 41 Quality of care. See also Performance utilization rates, 190 measurement; Standard of care workforce shortages and measurement, 269-270 maldistribution, 41 needs assessment, 172 Psychosocial interventions. See also Care oversight, 1, 12, 13, 14, 16, 17, 18, 41, coordination; Needs assessment; 44, 241, 277, 288, 309, 320, 338, Referral for psychosocial services; 340 Screening psychosocial problems status of, 269 common components, 7 Quality of life constraints on, 242-259 conceptual models, 356, 358-359 defined, 9, 354-355 effectiveness of interventions, 60, 92, 96, informational, see Informational support 101, 192, 202, 206, 235-236 needs, 82 information resources, 117, 120, 122 Psychosocial Needs Inventory, 178-179, 188 interventions, 393 Psychosocial Screen for Cancer, 170-171 logistical and material resources and, Psychosocial services, defined, 9, 84, 354 103 Psychosocial stressors, 2. See also outcome measure, 101, 332, 382, 392, Emotional distress and mental illness; 396 Psychological stress; Social problems provider education issues, 299, 300, effects on community, 67-68 318, 390 effects on families, 67 psychosocial stressors, 56 effects on patients, 53-60 research needs, 400 obstacles to managing, 37-42 screening and assessment, 169, 170, physical, 3, 4-5, 26-29 171 n.10, 172, 192, 224, 334, 335, Psychosocial support, defined, 354 358-359 Psychosomatic medicine, 13, 268, 276, 291, Quality of Life Breast Cancer Instrument, 295, 313 358 Psychotherapy and counseling. See also Peer Questions Are the Answer Campaign, 243, support programs 245 availability, 118, 262-263

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2 INDEX R for care coordination, 12, 241, 242, 246, 248, 250, 253-254, 255-258, Radiotherapy, 3, 26, 58, 97, 105, 196, 221, 268, 274-275, 276, 337, 384 225 for case management, 246, 249, 256, RAND Corporation, 202 257, 259 Reach to Recovery program, 88, 118, 126 collocation and integration of services Recommendations and, 241, 267-268, 275, 276-277 access to care, 394 CPT codes, 246, 247, 248, 249, 250, to assure provision of services, 379-380 251-252, 253, 254, 255 n.10, 258 caregiver (informal) support, 387-388 Evaluation and Management (E/M) for continuity of care, 382-384 services, 246, 247, 248, 249, 250, coordination of care, 386 253, 254, 255, 256, 258, 262 data systems, 394-395 H/B codes, 251-253, 258, 262 demonstration and evaluation of delivery information technology, 242, 257 approaches, 12, 17, 238-239 managed care plans, 247, 249, 257-258, employment, 388-389 268 health care providers, 10-11, 237 Medicare Advantage, 242-243, 246, 250 illness self-management, 385 Medicare fee-for-service, 228, 242, 244, monitoring progress in delivery of 246, 248, 249-250, 252, 253-257, services, 16-18 274-275, 276, 337, 367, 374 nomenclature standardization, 14-15, mental health services, 261-268 18, 85 monitoring progress in, 339-340 palliative care, 403 patient/family education, 248-249, 258 patient and family education, 11, 16-17, and patient–provider communication, 237-238, 385 244-245, 248-249 patient-centered care, 381 performance incentives, 12, 241, 242, of prior reports, 6-7, 379-406 248-249, 259 public education, 386 recommendations, 12-13, 17, 233-239, public health, 404 241-242, 275-277, 386-387, 404 for quality improvement, 382, 395-396, research needs, 238-239, 337 404-406 for screening or needs assessment, 231, quality measurement, 397-398 246-247, 249-250, 264 quality oversight, 13, 17-18, 277-278 for telephone calls, 254 reimbursement policies, 12-13, 17, 233- Remote providers 239, 241-242, 275-277, 386-387, counseling and psychotherapy, 93-94 404 implementing use of, 230-232 research and demonstrations, 14, 15-16, model program, 229-230 320-330, 337-338, 391-393, 398- obstacles to use, 236 400, 404 resources, 232-236 standard of care, 9, 16, 199-200 Reproductive aspects of cancer, 111 workforce education and training, 13- Research. See also Effectiveness research; 14, 18, 320-322, 389-391, 401-403 Health services research agenda Referral for psychosocial health services, evaluation of impact of this report, 5, 9, 69, 113, 118, 120, 129, 136, 338-341 155, 156, 166, 171, 190-191, 193, recommended priorities, 14, 15-16, 320- 194, 203, 221, 229, 254, 300, 319, 330, 337-338 336, 360, 384, 385, 386, 388, 389, scope of this study, 6-7, 42-44, 366-370 391, 396 scope of work of this study, 370-376 Reimbursement policies study methods for this report, 353-376 capitated payments, 257, 275 taxonomy and nomenclature issues, 83- 85, 329-330, 353-360

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2 INDEX Respite care services, 106, 107, 137 Self-efficacy, 38, 59, 66, 87, 88, 89, 90, 95 Road to Recovery, 39, 136 Self-esteem, 31, 52, 90 Robert Wood Johnson Foundation, 201, Self-management. See Illness 319, 366 self-management Depression in Primary Care Initiative, Services. See Psychosocial health services 256 Sexual dysfunction, 31, 33, 54, 93, 96, 97, Improving Chronic Illness Care 172 n.12, 174, 176, 188, 300, 301, program, 202 314, 336, 388 Projects in the Promoting Excellence in Shop Well With You, 116 End-of-Life Care Program, 206 Short Form (SF) Health Survey instruments, Rotterdam Symptom Checklist, 167, 179 358 Skin Cancer Foundation, 116 Sleep, 5, 28, 57, 58, 61, 101, 200, 231, 358 S Social integration, 53, 54 Social isolation, 11, 15, 31, 51, 54, 62, 66, Samuel Rodgers Health Center, 226 238, 334, 338 San Diego Hospice, 223 Social networks, 33, 53, 61, 88-89, 170, Sarcoma Foundation of America, 116 172 n.12, 178, 260, 336 n.1, 368 Science of Caring Program, 222-224 Social problems. See Employment changes; Scope of study, 6-7, 366-370 Financial stress; Health insurance; Screening for cancer detection, 194 Social supports Screening psychosocial problems. See also Social role functioning, 5, 30, 32, 33, 51, specific instruments 54, 56, 57, 68, 102, 104, 169, 172, clinical practice guidelines, 203 192, 206, 299, 309, 358, 359 competency of providers, 165, 311, 313, Social Security Disability Income, 10, 82, 314 108, 134, 264, 267, 364 current practice, 6, 164, 165-167, 247 Social supports. See also Peer support defined, 165, 171 programs for depression, 154, 156, 157, 165, 167, availability, 7 205, 226, 247, 250 and coping abilities, 54 domains, 334-335 definition and dimensions, 53 effectiveness, 154, 167, 231 and health practices, 55 with follow-up, 154, 199, 223, 232 informal, 39-40, 102-103, 260-261, 263, information resources, 114 265, 267 instruments, 15, 52, 165, 166-171, 176, and mental illness, 54 182, 224, 226, 230, 249, 250, 334- morbidity and mortality effects, 53-54, 335, 337 62-63, 65, 66 limitations, 167 n.5, 168 screening for, 168 in model programs, 155, 156, 201, 222, weaknesses in, 39-40, 53-55 223, 224, 226, 228 Social workers, 39 needs assessment contrasted, 171 baccalaureate and master’s degrees, non-English-speaking, 169, 170 301-302 performance measures, 270, 272 licensure, 286, 302 policy supports and barriers, 246, 247, recommendations for training, 374, 390, 249-250 391, 401, 402 for PTSD, 167, 168 n.6 reimbursement, 223, 254 recommendations of prior reports, 380- specialization and continuing education, 381, 384, 391 302-303, 318, 319 reimbursement for, 231, 239-250, 264 support services of, 89, 112, 113, 194, research needs, 15, 333, 334-335, 337 222, 223, 224, 228, 254, 255, 283, in self-care programs, 98 284, 315, 316, 337, 388 Second opinions, 112 workforce, 286

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2 INDEX Society for Pediatric Psychology, 307 Tamoxifen, 58 Somatic problems. See Fatigue in cancer Telepsychiatry, 93 patients; Pain; Psychosomatic Terminology. See Nomenclature medicine; Sleep standardization Spanish, intervention/services in, 112, 117, Testicular Cancer Resource Center, 116, 131 Three Component Model (CMTM), 157, 169, 232, 233, 236 Spiritual issues and needs, 31, 169, 172, 205 178, 182, 184, 188, 203, 207, 226, Thyroid Cancer Survivors’ Association, Inc., 297, 299, 300, 309, 315, 334, 336 117, 124, 131 n.1, 354-355, 357, 359 Tobacco use Standard of care. See also Delivery of assessment/monitoring, 10, 82, 168 n.6, psychosocial health services; 169, 271, 364 Performance measurement cessation interventions, 15, 98-100, 271, collocated, integrated care, 221-225 272, 306, 331, 338, 355 dissemination and uptake, 17, 339 depression and, 5, 57 examples of implementation approaches, mortality, 54 220-236 motivation to quit/use, 57, 60, 61 monitoring compliance with, 16 as outcome measure, 271 performance rewards, 13, 16 research needs, 331 recommendations, 9, 237-239 screening for, 168 n.6 Stanford University, 96, 358 Toronto Informational Needs Starlight, Starbright Children’s Foundation, Questionnaire-Breast Cancer, 180- 130 181, 189 State Children’s Health Insurance Program Transportation for patients and families (SCHIP), 243, 244, 246, 248, 262, grants and services, 7, 33-34, 39, 136, 264, 266 194, 260 State policies. See also Medicaid and illness management, 55 Primary Care Case Management, 246 need for, 3, 4-5, 39, 55, 102 Stroke, 54, 56, 57, 94, 96, 105 n.8, 196, Turning Point: The Center for Hope and 334, 336, 358 Healing, 226-227 Substance Abuse and Mental Health Services Administration (SAMHSA), U 321, 373 Sun protection, 98 Ulman Cancer Fund for Young Adults, 131 Supplemental Security Income (SSI), 10, 82, University of Louisiana, 96 n.6 108, 134, 264, 267, 364 University of Pennsylvania, 318 Support for People with Oral and Head and University of Pittsburgh, 318 Neck Cancer, 116, 131, 262 University of Wisconsin Comprehensive Support Team Assessment Schedule, 182- Cancer Center, 236 183, 189 URAC (Utilization Review Accreditation Supportive Care Needs Survey (SCNS), 176- Committee), 13, 18, 277, 340 177, 188 U.S. Medical Licensing Examination Supportive Care Network, 169 (USMLE), 291-292 Survivor care plans, 190 U.S. Preventive Services Task Force, 164 Susan G. Komen for the Cure, 116, 273 US Too, 89, 117, 124, 131 Swope Parkway Health Center, 226 V T Veterans Health Administration, 263 Tahoe Forest Cancer Center, 227-228 Employee Education System, 243 Tahoe Forest Hospital, 228

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2 INDEX National Cancer Strategy, 200 in biopsychosocial approaches; National Symposium on Clinician- Health care providers Patient Communication, 245 forecasting supply, 387-388 licensed providers, 284-285 nonphysician providers, 285-287 W size and diversity, 6, 108-109, 283, 284-288 Washington State University, 243 volunteer and peer support component, Weight reduction, 98, 100, 102 284, 287 Weight Watchers, 100 Workforce Development Collaborative on Wellness Community, 89, 125, 132, 223- Psychosocial Care During Chronic 224, 229, 230, 232, 236, 373, 385 Medical Illness, 14, 18, 320, 321 West Clinic, 224-225 WyJoCARE, 226 Wings Cancer Foundation, 224 Women’s Cancer Network, 117, 132 Women’s Healthy Eating & Living Study, Y 100 Women’s Intervention Nutrition Study Y-ME National Breast Cancer Organization, (WINS), 100 Inc., 117, 125, 132, 138 Workforce. See also Education and training

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