Cancer rehabilitation has been broadly defined as “an interdisciplinary team approach to helping patients and their families maximize their level of independence physically, emotionally, and spiritually within the limitations of their disease” [1]. Interdisciplinary rehabilitation team members often consist of many different professionals, such as physicians, nurses, social workers, psychologists/neuropsychologists, child life specialists, and rehabilitation therapists. Specific therapies may include any combinations of services, such as physical, occupational, speech-language, recreation, and other cognitive remediation therapies. More recently, Gamble, Gerber, Spill, and Paul defined the subspecialty of cancer rehabilitation as “any rehabilitation assessment, diagnosis, or functional intervention needed by and provided for any cancer patient at any moment along the continuum of their cancer care” [2].

Given that many pediatric cancer survivors suffer from “late effects” of the cancer and related treatments [3], rehabilitation issues often continue to be important in the long-term well-being of these survivors. Although there have been considerable improvements in survival rates for many childhood cancers, issues of morbidity continue to be of great concern. For example, Lackner et al. [4], prospectively studied 223 childhood cancer survivors and found that 75 % of the children in their long term follow-up group had at least one chronic medical problem. The organ system that was most often impacted was the nervous system (30 %), which has many implications for the need for ongoing rehabilitation services. Thus, therapies to address physical, speech-language, and cognitive functioning are particularly relevant in this population.

It has been known for many years that there is a need for rehabilitation services within cancer survivors, although the need for rehabilitation services has been studied mostly in adults. Lehmann et al. [5] conducted a retrospective chart review of 805 cancer patients from 4 different institutions. The goals of this study were to determine rehabilitation problems by cancer type/site, assess need for rehabilitation services, and to assess for gaps in delivering effective rehabilitation services. In the population studied, greater than 50 % had at least one problem defined as a “rehabilitation” issue, including paralysis, paresis, cognitive deficits (i.e., intellectual, perceptual), communication deficits, contractures, pressure sores, difficulties with ambulation or transfers, self care issues, fractures, and lymphedema. Psychological problems were more prevalent throughout the entire population studied, but even more so in those with physical disabilities versus those without (i.e., ~50 % in those with a physical issue and 29 % in those without). The authors noted that many of the subjects did not get appropriate rehabilitation services for their particular issue and that failure to get services often related to a lack of familiarity with rehabilitation services by the treating physician and failure to identify the rehabilitation problems.

Although the Lehmann et al. study was conducted more than 30 years ago, Paul and Buschbacher [6] report that many of the same barriers exist today. These authors note that a significant contributing factor behind skyrocketing healthcare costs in the world of oncology relates to the incomplete detection of rehabilitation, psychological, vocational, and financial needs in the cancer patient which in turn lead to poorer outcomes and quality of life issues. Given these concerns, a recent supplement in the American Journal of Physical Medicine and Rehabilitation (Vol 90, No 5) was published with the purpose of “increasing awareness of the role of rehabilitation in cancer care among the public and among medical professionals, as well as to stimulate further interest and training in the field of cancer rehabilitation” [6].

There may be multiple ways in which rehabilitation services can be helpful in the cancer population. Dietz is best known for introducing the idea of adaptive cancer rehabilitation as early as the 1960s. In 1981, Dietz suggested that there are four categories of cancer rehabilitation [7]. These are: preventative, where rehabilitation is aimed at improving physical functioning and reducing morbidity and disability; restorative, where cure is likely and the sequelae of cancer treatment are to be controlled; supportive, where the aim is to lessen disability when cancer is not eliminated but continues with periods of remission; and palliative, where there is advanced, active disease and control of symptoms and disability is required. Rehabilitation may also be thought of as treatment for acute vs. long term or chronic issues. For example, children recovering from a surgical resection of a brain tumor may undergo a period of intensive inpatient or outpatient rehabilitation in order to maximize their functioning and return to home and school life. In these circumstances, the goal is to capitalize on the rapid phase of recovery that is often seen in the initial weeks/months following an injury to the brain, such as in the case of a surgical tumor resection. In other cases, the goals of rehabilitation may be to treat more long-term issues, such as impact of limb amputation in an individual with osteosarcoma or in the case of cognitive late effects (secondary to radiation and chemotherapy treatments) seen in children with CNS cancers.

Given that rehabilitation may be helpful across phases of recovery, Heath [8] suggests that rehabilitation services may be beneficial to all childhood cancer patients in order to optimize their functioning and quality of life. This includes all parts of the spectrum, i.e., those in which there is a strong potential to be “cured” (e.g., ALL); those whose health may be maintained with periods of remission and relapse (e.g., childhood brain tumors); those whose cancer is likely to cause significant disability and reduced functioning (e.g., osteosarcoma); and even in those whose cancer is likely to be a terminal illness. Although one may not think of providing rehabilitation to those who have a terminal diagnosis, there may be situations in which such services can be quite helpful. For example, our facility once treated a school-age child with a recurrent brain stem glioma with poor prognosis. This young lady had significant difficulties with mobility, resulting in increasing isolation and loss of independence. In this case, the child benefitted from physical therapy to assist with increasing independence, decreasing isolation, and allowing her more autonomy when coping with end of life issues.

The focus of this chapter will be on long-term rehabilitation needs in survivors of pediatric cancer. It is meant to be a review of some of the most important issues to consider with regard to mobility, activities of daily living, swallowing, speech production, and language functioning. A few particular pediatric cancers will be highlighted, as these cancers tend to have higher impact on neurological functioning (e.g., CNS brain tumors) and mobility (e.g., osteosarcoma). Particular attention will be paid to posterior fossa tumors, as these are the most common brain tumors diagnosed in childhood. Treatment and surgical resection may result in a group of symptoms known as “posterior fossa syndrome” and are characterized by behavioral changes, irritability, emotional lability, mutism and speech deficits, difficulty following verbal commands, nystagmus, dysphagia or swallow deficits, cranial nerve palsies, and motor deficits, among other signs and symptoms [9].