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contents

26.1 introduction. . . . 401

26.2 general Principles of rehabilitation .. . . . 402

26.3 rehabilitation and exercise needs . . . . 402

. 26 3 1. Body.Structure.and.Function.. . . . 403

. 26 3 2. Activity.and.Participation. . . . 404

26.4 intervention. . . . 404

. 26 4 1. Physical.Activity. . . . 404

. 26 4 1 1. .Precautions.and.. Contraindications .. . . . 406

. 26 4 2. Other.Specific.Interventions. . . . 406

. 26 4 3. Facilitating.Participation.. . . . 408

. 26 4 4. .Intervention.for.the.Acutely.Ill,.Isolated,.. or.Hospitalized.Patient.. . . . 408

. 26 4 5. Palliative.Care. . . . 409

26.5 conclusion. . . . 409

references . . . .409

26.1 introduction

Rehabilitation and exercise are essential components of comprehensive cancer care, as the disease and its treatments present many challenges to functional independence and health. For adolescents and young adults (AYA) these challenges are compounded by the complex developmental transitions that take place during this time of life. Rehabilitation programs focus on the prevention or alleviation of physiological and psychosocial impairments, the promotion of partici- pation in age-appropriate activities, and the enhance- ment of quality of life. The overall goal is the achieve- ment of an independently functioning and self-sufficient individual who has a satisfying social and emotional life and is a contributing member of society within the limits of their disease and environ- ment. An adolescent’s goal may be simply to get life back to normal.

There is a paucity of studies specific to rehabilita- tion and exercise for AYA with cancer. Strategies for clinical practice are based therefore on general princi- ples of rehabilitation, evidence- and theory-based knowledge regarding motor learning, physiology, and psychology, and information extrapolated from stud- ies of cancer patients of all ages. These are linked with an understanding of the physical and psychosocial events and tasks inherent to adolescence and young adulthood.

rehabilitation and exercise

Marilyn.J .Wright

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26.2 general Principles of rehabilitation General principles of rehabilitation regarding goals, decision-making, and therapeutic approaches should be incorporated into all stages of cancer care: at diag- nosis, throughout treatment, following treatment, and in some cases at the end of life. Goals should be realis- tic, promote participation in meaningful life activities, and have measurable outcomes. These should be indi- vidualized depending on the unique needs and strengths of each patient and family, support systems, and environment. Goals may need to be readjusted, based on ongoing assessment of a constantly changing array of impairments and associated problems. The patient and family should be involved in decision- making regarding goals, wishes, preferences, and ways to achieve these, as a sense of control regarding inter- ventions will result in more effective programs [1]. It is important to educate the AYA and relevant family members about the implications of cancer-related impairment, the importance of rehabilitation and exercise, and optimal activities and strategies to achieve their goals. This enables them to make informed deci- sions and may promote motivation and compliance.

They need to be encouraged also to accept some

responsibility for their outcomes. Healthcare profes- sionals and others in the community can support them in their efforts and provide specific programs and interventions, but for the best results, the day-to-day and long-term follow-through have to be adopted by the recipient.

In some cases, compromises among the goals of the adolescent, the parent and the health care team will have to be made. The latter must be sensitive to indi- vidual differences in short-term and long-term needs, values, culture and the day-to-day variation in how the adolescent and family are coping physically and emo- tionally. Services are interdisciplinary, involving poten- tially many different health care professionals. These may include physiotherapists, occupational therapists, child life specialists, psychologists, speech and lan- guage pathologists, nurses, physicians, recreation ther- apists, dieticians, and social workers. Ongoing com- munication and collaboration are imperative.

26.3 rehabilitation and exercise needs The International Classification of Functioning, Dis- ability, and Health [2] provides a standard language

Potential.impairments,.

activity.limitations,.and.

participation.restrictions.

encountered.by.adoles- cents.and.young.adults.

receiving.treatment.for.

cancer Figure 26.1

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and framework for the description of health and health-related states to classify and address rehabilita- tion assessment, options, treatments, methods of ser- vice delivery and outcomes. The tool recognizes the interactions among the dimensions of body -anatomic structure and physiological function; activity – the execution of a task or action by an individual (capac- ity); and participation – an individual’s involvement in life situations (performance). Problems within these dimensions are termed respectively impairments, activity limitations, and participation restrictions. The model also considers the impact of contextual envi- ronmental and personal factors on function.

The potential issues within these dimensions encountered by those receiving treatment for cancer that could impact on rehabilitation are outlined in Fig. 26.1. Although all of these may impact on inter- vention and must be considered when planning goals and intervention strategies, only those most pertinent to physical rehabilitation are discussed.

26.3.1 Body Structure and Function

Cancer and its treatment can result in numerous impairments in body structure and function. Problems vary within the course of treatment and vary greatly among patients. There is a wide range in the burdens of morbidity, even in patients receiving the same treat- ment.

Fatigue (a feeling of weariness, tiredness, or lack of energy) is a very common and pervasive complication of cancer treatment that may persist after therapy is completed. Fatigue can be physical, mental, or emo- tional. It contributes to the overall morbidity of the disease and has a significant impact on quality of life if it causes patients to reduce their level of activity and participation. The etiology is most likely multifactorial but includes a reduction in oxygen delivery to the cells [3]. Davies et al. [4] categorized fatigue in children and adolescents receiving treatment for cancer as typical tiredness (normal tiredness from regular activities or circumstances), treatment fatigue (energy lost greater than energy replenished resulting from hospitaliza- tion, disrupted sleep, pain, chemotherapy, radiation therapy, anemia, and psychological or emotional stress), or shutdown fatigue (sustained or profound

loss of energy resulting in disengagement with sur- roundings).

Procedural, treatment-associated, and cancer- related pain, are common and concerning problems during cancer treatment [5]. Pain can limit activity to the extent that bed rest is necessary and can affect the quality and quantity of sleep. Specific examples include neuropathic, steroid-induced, and osteoporotic bone pain.

Reduced cardiovascular and pulmonary function [6] as well as poor exercise tolerance, fitness, and endurance [7] can occur. Anthracycline-induced car- diomyopathy can cause reduced exercise capacity [8].

Weight loss or weight gain can be problematic. The prevalence of obesity in the general population is increasing in many countries; a disturbing trend asso- ciated with undesirable body image, poor self-esteem, and the risk of subsequent higher morbidity and mor- tality rates [9]. These issues concerning obesity are amplified in AYA receiving and following treatment for cancer. Mechanisms may include cranial irradiation, chemotherapy, inactivity, and improper diet [10].

Musculoskeletal impairments are also prevalent.

Osteopenia is a common complication of cancer ther- apy. Contributing factors include high-dose cortico- steroids and possibly reduced activity during times of illness [11]. Treatment with corticosteroids can result also in myopathy of the proximal musculature [3, 12].

Lack of activity due to bed rest, malaise, fatigue, or nausea also contribute to muscle weakness. Loss of range of motion, leading potentially to contracture, is a secondary impairment resulting from weakness and immobility. Vincristine-induced neuropathy can con- tribute to this problem. Skeletal impairments such as amputation, deformity resulting from limb-sparing procedures, and scoliosis can occur due to tumors and their treatment.

Central nervous system (CNS) damage can result in

cognitive and perceptual deficits and abnormal muscle

tone. Spasticity can cause pain and interfere with

hygiene and functional independence [12] These prob-

lems, compounded by other impairments such as

weakness, decreased range-of-motion, and obesity,

can contribute to multisystem impairments such as

difficulties with balance, coordination, and motor

learning [13].

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26.3.2 activity and Participation

Physical and psychosocial impairments can impact potentially on all areas of activity and participation, and activity limitations and participation restrictions can impact reciprocally on impairments. Limitations in motor function are obvious in many AYA treated for bone and CNS tumors. More subtle limitations in gross motor proficiency have been documented during and following treatment in adolescents with leukemia and lymphoma [14, 15]. Problems with fine motor skills including poor handwriting, manual dexterity, and drawing performance have also been identified [16].

Self-care skills such as bathing, toileting, dressing, personal care, and grooming can be affected. This can be devastating for adolescents who are striving to be independent and maintain their privacy. Other activi- ties of daily living such as household tasks or yard work may be limited. These may not be priorities for adolescents, but they are important skills to learn to enable independent living as an adult.

Learning, cognitive, and language skills may be affected due to neurosurgery, radiation therapy, or other CNS treatments, and may affect participation in educational, social, and other activities. Oral motor dysfunction of neurogenic or mechanical origin, which may disrupt communication and eating, can be a sig- nificant impairment.

Participation in normal activities may also be affected by isolation restrictions, hospitalization, or preconceived ideas of people encountered by AYA in their schools and community. Teachers, coaches, employers, or even family members may overprotect or overrestrict the AYA with cancer.

Research in this area includes a study of leisure-time physical activity in adolescents receiving treatment for cancer that documented decreased participation and feelings of less competence while on treatment, with improvement following treatment. Those who remained active throughout their cancer experience reported bet- ter self-concept, perception of physical abilities, interac- tions with parents, and same and opposite sex relation- ships; many of the psychosocial areas that are compromised in AYA with cancer [17].

Long-term follow-up of AYA treated for acute lym- phoblastic leukemia (ALL) has identified similar find-

ings; the subjects felt less competent in physical activi- ties, were less likely to participate in physical versus sedentary activities, enjoyed physical education less, and were more prone to sports injury. These findings were associated with decreases in health-related qual- ity of life [18]. These AYA would have been less likely to reap the potential physical and psychological bene- fits of physical activity.

Activities in which AYA receiving treatment for cancer do participate when not feeling well or hospi- talized include sedentary pastimes such as watching television, using the Internet, or playing video games.

These pursuits have been linked to obesity [9]. A tendency to partake in these activities may continue following completion of treatment, resulting in further inactivity and long-term problems.

26.4 intervention 26.4.1 Physical activity

The most researched, efficacious, and efficient inter- vention to address physical impairments, activity limi- tations, participation restrictions, and reduced quality of life in people receiving treatment for cancer is phys- ical exercise. Studies of various exercise interventions on adult populations have contributed most of the data that support the current understanding of the effects of exercise in AYA with cancer. Reviews of these stud- ies have shown consistently that physical exercise fol- lowing diagnosis has a clinically and statistically posi- tive effect on many of the negative consequences of cancer and its treatment [19]. Exercise benefited phys- iological functions including aerobic capacity, muscle strength, flexibility, body composition and weight, hematological indexes, nausea, fatigue, pain, and diar- rhea, and also had positive effects on many facets of psychological and emotional well-being including per- sonality functioning, anxiety, depression, feeling of control, perceived physical competence, self-esteem, self-confidence, and satisfaction with life [3, 19, 20].

There is some evidence that physical activity can have

an effect on the immune system, to reduce the risk of

cancer recurrence and/or secondary malignancies and

increase survival time. However, these data must be

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considered in the context of several methodological limitations inherent in the studies with respect to sam- pling, design, and outcome measures [3, 21].

Some studies of fatigue have included AYA. In a qualitative investigation of adolescents with cancer, clinical interventions identified as alleviating fatigue included maintenance of optimal fitness levels through an appropriate balance of rest and exercise, in addition to distraction and entertainment and relief from dis- ease or treatment-related symptoms [4, 22]. A survey of cancer survivors who considered themselves ath- letes prior to diagnosis included young adults. Those who continued to exercise with modifications during treatment believed exercise made them less likely to develop health problems, and physical activity bal- anced with rest was an effective intervention for fatigue [23]. These studies have been complemented by the more rigorous research investigating the role of exer- cise in preventing and/or alleviating cancer-related fatigue in adults. This has demonstrated that increased physical exercise is associated with less fatigue during and after treatment [3, 19]. These findings are particu- larly important as the past recommendations of rest- ing and avoiding physical effort can have a paradoxical effect. Inactivity induces further muscular wasting and loss of cardiorespiratory fitness and endurance, creat- ing a self-perpetuating condition of further dimin- ished activity, leading to easy fatigue and vice versa, which can be long lasting [3].

Sharkey et al. [7] found that an exercise program in AYA who had received anthracyclines resulted in increased exercise ability and a trend toward improved peak oxygen uptake and ventilatory anaerobic thresh- old. Children and adolescents who were encouraged to be physically active during treatment for ALL had less loss of passive range of motion compared to a group who did not receive activity intervention. Surgical pro- cedures had been necessary in some of the patients in the nonintervention group [25].

To promote exercise in AYA receiving treatment for cancer, it is necessary to be aware of the determinants of physical activity. In addition to the many potential impairments, prediagnostic levels of activity influence participation during and following treatment [17].

Other predictors include individual factors such as physical and cognitive status, communication and

psychosocial abilities, gender, body mass index, feel- ings of competence, and perceived benefits. Environ- mental and personal factors such as available facilities, season, economics, alternative sedentary activities, social influences, cultural perspectives, preferences, and activity levels of family and peers; the educational influences of health professionals and educators, and the media are also influential [1]. These factors must be taken into consideration when working with AYA.

Therapists must provide ongoing encouragement and reinforce the importance of regular activity. Ideally, participation in physical activity should take place throughout and following treatment. Efforts should be focused particularly on those individuals identified with low incentive, as they are most at risk for inactiv- ity and its associated problems.

In addition to physical activity promoting health and well-being during treatment, there may be impli- cations for long-term health, as adolescence is an important time for adopting healthy practices includ- ing preferences for activity or inactivity [25], which may impact on future fitness, obesity, bone density, and cardiovascular disease. This is particularly impor- tant for adult survivors of cancer who are at risk for multiple health problems.

The intensity, frequency, type, location, and pro- gression of programs are based on medical condition, assessment, preferences, and goals. Exercise prescrip- tion in adult cancer studies is typically moderate–

intensity exercise, 3–5 days per week, 20–30 min per

session. However, low exercise intensities may achieve

similar health benefits [19, 20]. Daily exercise with

shorter, lighter-intensity bouts with rest intervals and

slower progressions may be preferable for decondi-

tioned patients [19]. These recommendations can be

used for adolescents, but a consensus process devel-

oped recommendations for children and adolescents

in the general population of participation in at least

1 h of moderately intensive physical activity daily,

either continuous or spread throughout the day. Mod-

erate intensity is activity equivalent to a brisk walk,

such as that when the participant might feel warm or

slightly out of breath. Those who do very little activity

per day should start with 30 min per day. Activities

that enhance muscle strength, flexibility, and bone

health should be done twice weekly [26]. Exercise pre-

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scription should include warm-up and cool-down activities.

Types of exercise used most frequently in adult cancer patients were aerobic or cardiovascular endur- ance and occasionally strength training programs [19]. Activities included regular walking, treadmill walking, bicycle ergometry, or bed ergometry for hospitalized patients. Walking is the most common exercise for cancer patients [19, 27]. It is a natural, safe, and tolerable choice that relates directly to daily living and is conducive to AYA lifestyle, particularly if complemented with music or participation with peers. It is important for AYA to participate in activi- ties in which they will experience personal accom- plishment. Recreational pursuits are often the most preferred form of activity. Popular options include martial arts, dance, aerobics, swimming, walking, biking, and activities at fitness clubs. Some AYA are able to resume competitive sports, although adapta- tions may be necessary.

Individual lifestyle may influence the preference for type of program, varying from self-directed home pro- grams to group exercise classes [27]. Alternatives should be offered, particularly for those who have a busy school or work life. The concept of “lifestyle phys- ical activity interventions” has been an efficacious approach for youth treated for cancer. This approach focuses on increasing moderate-intensity activity through individualized programs that take into account individual, cultural, and environmental differ- ences [28].

26.4.1.1 Precautions and contraindications (table 26.1)

It is important to be aware of the implications of car- diotoxicity, susceptibility to fractures, and other effects of cancer treatment on motor skills and balance when counseling AYA regarding exercise. Clinical concerns regarding the prescription of exercise for cancer patients have included the potentially immunosup- pressive effect of vigorous exercise, fracture due to compromised bone integrity, and exacerbation of car- diotoxicity, pain, nausea, and fatigue. However, research is beginning to dispel many of the myths and fears about safety and feasibility [19]. Guidelines on

contraindications to participation in exercise pro- grams for adults with cancer have been published but are not necessarily based on sound research [19, 27].

Precautions have included uncontrolled and unstable cardiac disease, certain metastatic lesions, and recent intracranial hemorrhage or deep-vein thrombosis with pulmonary embolism. Other recommendations include the avoidance of the following: high-intensity activities if the hemoglobin level is less than 80 g/l, activities that present a risk of bacterial infection if the absolute neutrophil count is less than 0.5×10

9

/l , con- tact sports or high-impact activities that pose a risk of bleeding if the platelet count is less than 50×10

9

/l [19], and power weight lifting if cardiomyopathy is a risk factor [29].

Patient symptomatology is the foremost guide for the intensity, duration, and mode of exercise employed during treatment for cancer [30]. It may be necessary to vary the intensity and frequency of exercise depend- ing on treatment schedule and variations in response to therapy. Ideally, patients should receive individual- ized consultation.

Recommendations regarding a physically activity lifestyle should be part of a comprehensive program to effect an overall healthy lifestyle. Other healthy behaviors that should be addressed include proper diet, not smoking, sun protection, and regular check- ups.

26.4.2 Other Specific interventions

Adolescents with certain impairments, diagnoses, or

treatments may require particular interventions. If a

patient has or is at high risk for loss of range of motion,

implementing the principles of treatment for contrac-

ture management may be indicated [12]. These may

include prolonged stretch through positioning, serial

casting, and the use of splints or orthoses. Orthoses may

provide stability for protection from injury or enhance-

ment of function. For example, ankle-foot orthoses may

be used for significant vincristine neuropathy. These are

sometimes unacceptable to adolescents due to cosmetic

considerations and inconvenience. When neurological

impairments are impacting on function or quality of

life, a variety of therapeutic interventions, such as spas-

ticity management techniques and motor learning prin-

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table 26.1 Potential.issues.impacting.on.rehabilitation.programs.for.adolescents.and.young.adults.with.cancer

impairments of activity Participation

body function/structure limitations restrictions

Fatigue, pain, nausea limitations in restricted partici-

pation in

Thrombocytopenia, anemia Gross motor function Education

Cardiotoxicity, pulmonary

dysfunction Fine motor function Recreation/leisure

Weight.loss/weight.gain,.

↓fitness. Self-care Sports

↓Range.of.motion/

contracture Activities.of.daily.

living Social.activities

Osteopenia/osteoporosis Communication Volunteering

Muscle.weakness,.bone.

deformity      ↔ Learning         ↔ Employment

Spasticity,.balance/

coordination.deficits Interpersonal.

relationships Travel

Motor.learning.problems Cognitive deficits, percep- tual deficits

Sensory/motor.neuropa- thy

Visual.and.hearing.deficits Bowel/bladder problems Dysphagia/dysarthria Psychosocial.problems

    ↑       ↑

Personal factors environmental

factors

Gender Accessibility

Age Health.care.facilities

Family.support Community.facilities

Contextual.factors Peer.support Educational.facilities

Culture Climate,.season,.

location

Spirituality Societal.attitude

Economic.

resources Transportation

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ciples, may be incorporated into treatment [12, 13]. The etiology and nature of persisting fine motor and hand- writing problems are diverse, so individualized rehabili- tation programs are warranted [16].

AYA undergoing amputations for bone tumors need to follow rehabilitation programs addressing strength- ening, contracture management, prosthetic use, and adaptations for driving a car [30]. Therapy using ortho- pedic and gait-training principles is important for those having limb-sparing surgery. Guidelines for therapy vary depending on surgical protocols, specific procedures, and the amount of bone replaced.

Treatment principles involving cognitive strategies, generalization of learning, and behavioral approaches may need to be incorporated into rehabilitation pro- grams. In some cases, a compensatory approach is necessary, requiring the use of adaptive equipment, or modification of environments or activities.

Pain management can be an important role for rehabilitation professionals. To augment the pharma- cological management of pain, interventions such as massage, heat, cold, acupuncture, positioning, trans- cutaneous electrical stimulation, or behavioral tech- niques may be used. Appropriate precautions must be followed.

Interventions may involve the facilitation of safe and efficient swallowing for patients with pharyngeal dysfunction. Input for patients with dysarthria result- ing from oral motor dysfunction of neurogenic or mechanical origin may involve the provision of com- munication devices or exercise.

26.4.3 Facilitating Participation

Various strategies are used to promote participation in an active life with respect to socialization, sports, leisure, recreation, education, volunteering, employ- ment, and community. School reentry after a diagno- sis of cancer can be very challenging, but is generally encouraged as it maintains some normalcy in life and allows for continued social and academic participa- tion while providing hope for the future. Rehabilita- tion professionals may be involved in liaising with and educating school staff and peers about the diagnosis and its implications. Recommendations regarding positioning, lifting, and transferring, learning needs,

and physical education may facilitate the return to the educational setting. In school-based programs, thera- pists may prescribe equipment for accessibility and computer-based systems [31]. Going to college can present challenges of independence in learning, mobility, and self-care. Some postsecondary institu- tions may have programs to facilitate students with special needs. Vocational counseling is helpful for some AYA.

Families should be encouraged to access commu- nity recreational facilities, as these may be motivating, well equipped, and socially inviting. Alternatively or additionally, specialized groups or camps and adapted recreational programs provide opportunities for those who desire involvement with peers who are experienc- ing similar health issues.

26.4.4 intervention for the acutely ill, isolated, or Hospitalized Patient Rehabilitation and exercise are very important for hos- pitalized patients. Goals for acutely ill patients will be focused on comfort and prevention of unnecessary secondary complications. Bed rest and immobility combined with cancer treatments can result in rapid loss of muscle strength, contracture, pulmonary com- plications, skin damage, and osteoporosis. Interven- tions to prevent these problems may include position- ing, frequent change of position, active bed exercises, and breathing exercises and airway clearance tech- niques if respiratory function is compromised [32].

Patients should get out of bed for weight-bearing activities as soon as possible. Patients in isolation, such as recipients of bone marrow transplants, require encouragement and activity opportunities to remain mobile, maintain the ability to perform activities of daily living, and avoid boredom [32]. Stationary bicy- cles, ergometers, treadmills, or light weights can be used if appropriate disinfection protocols are employed.

Performance of activities such as getting dressed, and

if the isolation protocol allows, walking to the wash-

room or climbing stairs should be incorporated into

the day. The temporary use of mobility or walking aids

may facilitate early mobilization. A leave of absence

from the hospital can be very beneficial physically and

psychologically.

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26.4.5 Palliative care

Providing palliative care for a young person is very dif- ficult for all involved. Rehabilitation input has been found to make a significant difference to the lives of patients with terminal cancer and their families by giv- ing them the ability to participate in meaningful activ- ities and decreasing the burden of care [33]. Rehabili- tation professionals may be involved with facilitating function and optimizing comfort to help the young person and their family achieve the best possible qual- ity of life. This is accomplished through applying reha- bilitation principles and practices in respect to pain management and facilitation of independence in mobility and activities of daily living as tolerated and desired. Discharge from the hospital may be facilitated with appropriate environmental or mobility aids and assistive devices.

26.5 conclusion

Adolescence and young adulthood can be a particu- larly difficult time to experience cancer and its treat- ment as there may be missed opportunities for partici- pation in the normal daily activities and special events of these years. Rehabilitation professionals work col- laboratively toward limiting impairment and facilitat- ing optimal participation in the activities of impor- tance to this group. There is a need for further research in all levels of functioning in this area.

references

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