Rehabilitation for Brain Tumor Survivors: Current Knowledge and Future Directions Mary Vargo, MD Associate Professor Physical Medicine and Rehabilitation MetroHealth Rehabilitation Institute of Ohio Case Western Reserve University Cleveland, OH

Incidence Brain and Other CNS „ „

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1.4% of all malignancies 62930 new primary brain tumor (PBT) diagnoses estimated in 2010 23720 malignant 57--Median age (peak incidence 75-85, 65.5/100,000) Childhood - most common solid tumor (21.3% of all childhood malignancy; 4.7/100,000) 4030 cases childhood brain tumor (benign + malignant) Metastatic brain tumor – incidence at least 10X greater than PBT

-American Cancer Society.

Cancer Facts and Figures 2010. Atlanta: American Cancer Society, 2010.

http://www.cancer.org -American Brain Tumor Association. http://www.abta.org -Central Brain Tumor Registry of the United States. www.cbtrus.org

Prevalence Brain and other CNS „ „ „ „ „ „

612,000 people (2004 estimate) 209/100000 124,000 malignant 488,000 benign 28,000 children For malignant tumor, 5 year survivorship 36% for adults (decreases with age) and 71-72% for pediatric (dx 1999-2005)

Central Brain Tumor Registry of the United States. www.cbtrus.org

Rehabilitation Considerations „ „ „ „ „

Varying survivorship Variable trajectory even for benign diagnoses High frequency of disabling complications High severity of disabling complications Life context

Frequency of Rehabilitation Needs or Disability

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>80%: >70%: >60%:

Nervous system Breast, head and neck, lung Prostate, bone, bladder

Lehmann J, DeLisa JA, Warren CG, et al. Cancer rehabilitation assessment of need development and education of a model of care. Arch Phys Med Rehabil 1978;59:410-419

Neurologic Complications in Brain Tumor Inpatients „

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Cognitive deficits 80% Weakness 78% Visual-perceptual deficit 53% Sensory loss 38% Bowel/bladder 37%

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Cranial nerve palsy 29% Dysarthria 27% Dysphagia 26% Aphasia 24% Ataxia 20% Diplopia 10%

Mukand, Am J Phys Med Rehabil 80(5): 346-350,2001

Neurologic Complications in Brain Tumor Inpatients

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75% have 3 or more deficits 39% have 5 or more deficits

Mukand

Childhood Cancer Survivor Study Performance limitations

40 35 30

%

25 20 15 10 5

B on e

S ar co m a

W ilm N eu s ro bl as to m a

H od gk in N 's on -H od gk in 's

B ra in

A ll Le uk em ia s

0

Ness et al. Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Ann Intern Med 2005; 143:639-647.

Childhood Cancer Survivor Study Participation Restriction (ADL’s, IADL’s, work/school) 25

20

15 %

ADL's IADL's Work/school

10

5

Ness et al, 2005

Bo ne

W ilm N eu s ro bl as to m a Sa rc om a

in N 's on -H od gk in 's

H od gk

Br ai n

Al l Le uk em ia s

0

Severity of Disability

Employment

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Database of 1433 cancer survivors age 2562. Nearly 20% report cancer-related limitations on ability to work (1-5 years after diagnosis) 13% unable to work at all. Impact of disease stage and other health comorbidities Short et al, Cancer 103(6):1292-1301,2005

Severity of Disability

Employment After Cancer Odds Ratios

Most affected: --Blood (3.03); CNS (2.2); Head and Neck (1.7) „ Least affected: --Uterus (0.38); Prostate (0.44) Breast (0.48); Thyroid (0.6) „

Frequency/Severity of Disability

Employment

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Finnish Cancer Registry 12,542 cancer survivors “free of cancer and alive” and age/gender matched controls; age 15-60 at diagnosis

Taskila-Abrandt et al. European Journal of Cancer 2004;40:2488-2493.

Frequency/Severity of Disability Employment After Cancer

80

69

70 60 Percent

50

45

43

40 30 20

66

64 45

61

65

72 69

68 66

49 30

34

19

10 0

Taskila-Abrandt et al. European Journal of Cancer 2004;40:2488-2493.

Rehabilitation Data „

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Acute Inpatient Rehabilitation -Brain tumor vs other brain diagnoses -Brain tumor subgroups Other Settings -Cognitive studies (rehab, meds) -Exercise

Inpatient Rehabilitation

Functional Independence Measure (FIM) Motor „ „ „ „ „ „ „ „ „ „ „ „ „

Eating Grooming Bathing Dressing-upper body Dressing-lower body Toileting Bladder management Bowel management Bed, chair, wheelchair Toilet transfers Tub, shower transfers Walking Stairs

Cognitive „ „ „ „ „

Comprehension Expression Social interaction Problem solving Memory

Uncontrolled respective studies „

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Pediatric. Philip et al. Rehabilitation outcome in children after treatment of primary brain tumor. Arch Phys Med Rehabil 1994; 75: 36-39. Adult. Marciniak et al. Functional outcome following rehabilitation of the cancer patient. Arch Phys Med Rehabil 1996; 77:54-57.

Controlled studies Brain tumor vs stroke. - Huang et al. Functional outcome after brain tumor and acute stroke: a comparative analysis. Arch Phys Med Rehabil 1998; 79:1386-1390 - Greenberg et al. Rehabilitation outcomes in patients with brain tumors and acute stroke: comparative study of inpatient rehabilitation. Am J Phys Med Rehabil 2006;85(7):568-73. (Israel) - Geler-Kulcu et al. Functional recovery of patients with brain tumor or acute stroke after rehabilitation. J Clin Neurosci 2009;16:74-78. (Turkey) „ Brain tumor vs traumatic brain injury - O’Dell et al. Functional outcome of inpatient rehabilitation in persons with brain tumors. Arch Phys Med Rehabil 1998; 79:1530-1534. „

Controlled studies Brain tumor subtypes „

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Primary vs Metastatic Brain Tumor; High Grade vs Low Grade Tumor. Marciniak et al. Functional outcomes of persons with brain tumors after inpatient rehabilitation.Arch Phys Med Rehabil 2001; 82:457-463. High Grade vs Low Grade Astrocytoma. Fu et al. Comparison of functional outcomes in low and high grade astrocytoma rehabilitation inpatients. Am J Phys Med Rehabil 2010; 89:205-212.

Inpatient Brain Tumor Rehabilitation: The Evidence „ „ „ „ „ „ „ „ „

Comparable gains to other “brain” diagnoses Comparable or shorter length of stay (LOS) Comparable discharge to community rates No significant differences between tumor subtypes Initial tumor presentation associated with higher gains than recurrence Functional goals maintained Effect of concurrent radiation therapy? (conflicting data) Effect of tumor grade on LOS? (conflicting data) Higher interrupted stay

Unplanned transfers „

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Marciniak, 1996—33% (35% of brain tumor patients; other groups 3136%), compared to 12% overall rate. Marciniak, 2001—24% Alam, 2008—25%

Marciniak et al. Functional outcome following rehabilitation of the cancer patient. Arch Phys Med Rehabil 1996; 77:54-57.

Malignant Versus Benign Transfer Rate

30

25

Percentage

20 Malignant 15 Benign 10

5

0 Brain

Spinal cord

Other

Stroke

Total

Cognitive Strategies: Cognitive Therapy Controlled studies

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Improved subjective cognitive function posttreatment; improved attention and verbal memory at 6 months (140 adult glioma patients) Childhood CNS cancer survivors-improved academic performance in language and mathematics, improved parent report of attention in daily activities, and higher level of “metacognitive strategies”. Neuropsychologic testing (attention, memory) no difference.

-Gehring et al. Cognitive rehabilitation in patients with gliomas. J Clin Oncol 2009;27:3712-3722. -Butler et al. A multicenter, randomized clinical trial of a cognitive remediation program for childhoodsurvivors of pediatric malignancy. J of Consulting and Clinical Psychology 2008; 76(3); 367-378.

Cognitive Strategies: Pharmacologic „ „

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Methylphenidate is best studied agent Favorable effects on attention and on caregiver (parent, teacher) reports of attention, social functioning and academic competence Learning effect may confound studies with repeated testing, especially crossover studies

-Meyers et al, Journal of Clinical Oncology 1998; 16: 2522-2527. -Thompson et al J Clin Oncol 2001; 19:1802-1808. -Mulhern et al. J Clin Oncol 2004; 22: 4795-4803.

Pediatric PBT vs TBI

Psychologic and adjustment status „

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Brain tumor patients more likely to internalize problems, and TBI patients more likely to externalize them. TBI patients more severely impaired than PBT patients

Poggi et al. Psychological and adjustment problems due to acquired brain lesion in childhood. Brain Inj 2005;19(10):777-785.

Exercise Preferences in Primary Brain Cancer „ „ „ „ „

106 patients (out of 560 surveys sent) 75% with grade III or IV disease During treatment at medical center After treatment at home Cross-sectional

Jones et al. Exercise interest and preferances among patients diagnosed with Primary brain cancer. Support care Cancer 2007;15:47-55.

Exercise Preferences Receiving Information (very/somewhat interested)

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Mail 55% Email 49% Internet 48% Flyer 47% Computer program 41%

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Face to face 29% Phone 24%

Brain Tumor Patient Perceptions: Exercise Tolerance and Preferences During treatment „ 45% want info „ 47% able to exercise „ 51% walking „ 44% resistance training

After Treatment „ 70% want info „ 84% able to exercise „ 53% walking „ 36% resistance training „ 19% cycling

Brain Tumor Patient Preferences: Exercise Setting During Treatment ƒ 25.5% Home ƒ 9.4% Local fitness center ƒ 5.7% Hospitalbased center ƒ 14.2 % No preference

After Treatment „ 43.4% Home „ 22.6% Local fitness center „ 4.7% Hospitalbased center „ 17% No preference

Future Implications

Strengths „

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Brain rehabilitation care systems are well developed; ie field of rehabilitation relatively well positioned to care for brain tumor patients. FIM instrument allows measurement of function Because the need is obvious, brain tumor patients may be more likely to receive needed care than other cancer populations, at least in the initial course

Challenges „

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Identifying downstream needs and providing the right care Measuring (and treating) functional deficits vs quality of life and symptom control Vocational and avocational issues Brain tumors /other brain disorders