Exploring the Role of Physical Activity During Palliative Care for Adolescent and Young Adult Cancer Patients

Implications of a Palliative Cancer Diagnosis

Palliative disease results in a progressive loss of QOL due to treatment- and disease-related side effects (e.g., pain, fatigue) and the inability to carry out activities of daily living (ADLs).^9–11 Losing the ability to perform ADLs independently is reported as one of the most distressing concerns during palliative care.^12,13 As a group striving for autonomy, the loss of independence is of great concern. Cancer-related symptoms reported to hinder the ADLs of AYA-aged cancer patients, in order of highest to lowest frequency, are: cancer-related fatigue (CRF), reduced mobility, pain, and poor appetite. ¹³ Wein et al. found that 89% of AYA-aged cancer patients reported experiencing three or more of these symptoms, ¹³ which can contribute to the increase in total suffering experienced by the PCP. It is also important to emphasize the frequency and burden of CRF. CRF has been reported among 60%–90% of adult PCPs, and is associated with anxiety, depression, pain, dyspnea, insomnia, anorexia, nausea, and drowsiness. ⁹ CRF is a key contributor to diminishing ADLs and, by consequence, affects the PCP's overall QOL. ⁹

To help manage cancer and its treatment-related symptoms while maintaining the patient's QOL, those not responding to curative treatment are often placed under palliative care. ¹⁴ The main goal of palliative care is to maximize the QOL of the PCP by managing their cancer-related symptoms and minimizing physical and emotional distress.^3,4,13,15 Due to medical and technological advancements, the survival times of PCPs have been increasing. ¹¹ While the successes are to be celebrated, this means that those bearing a palliative diagnosis will live longer with the burden of their cancer and its progressive functional deterioration.^4,16

Current palliative care models for AYAs with cancer involve managing symptoms and offering the appropriate transitional support between health and death.^13,16 This commentary highlights the potential benefits of PA and outlines the rationale for PA's inclusion in the supportive care plan to reduce further the physical and psychosocial burdens associated with a palliative cancer diagnosis in the AYA-aged patient.

Palliative Care and Physical Activity

As physical wellness is strongly associated with perceptions of QOL, it is plausible to assume that including PA into the overall supportive palliative care plan could enhance or maintain the PCP's QOL.^4,9,10,15,17 In the not-too-distant past, patients with incurable malignancies were often discouraged from participating in PA. It was thought that these individuals needed to conserve their physical power; thus inactivity and rest were suggested as the most appropriate treatments. ¹¹

While a growing body of literature has emerged in support of the benefits of PA for both childhood and adult cancer patients and survivors (e.g., reduced fatigue and cancer worry and increased muscular strength, functional fitness, emotional and social well-being, self-esteem, and QOL),^6–8 relatively little is known about the role of PA for the PCP. However, emerging studies in adults suggest that PA may help PCPs manage their cancer-related symptoms, preserve functional mobility, decrease sleep problems, gain an overall sense of well-being, and have a positive impact on QOL,^{3,5,9,11,18–20} and as such may be an essential addition to the comprehensive supportive palliative care plan. ¹¹ Even with a life expectancy as short as 3–12 months, adult PCPs who participated in a PA program reported positive results related to fatigue and emotional well-being. ¹⁷ In some cases, PA has acted as a valuable means to distract the PCP from their diagnosis, giving the patient an opportunity to feel some aspect of control over their body. ²¹ While the role of PA as a supportive care intervention in PCPs is relatively unexplored, preliminary evidence suggests that PA interventions are tolerated, well-received, and lead to improved patient outcomes.^5,10,11

Implications for the Health Professional

Regrettably, the literature surrounding the optimal PA prescription for PCPs is limited and inconclusive. ⁹ Moreover, PA needs and preferences are as varied and unique as each individual. ¹⁰ However, preliminary data with adult PCPs suggest that patients prefer to engage in PA immediately after completing treatment, rather than during the treatment period. ¹⁰ With regards to the most preferred type of PA, adult PCPs rate walking as most desirable. ¹⁰ Walking seems to be the most common form of PA because it is inexpensive, can be performed anywhere, requires minimal equipment, and the patient can set the duration and intensity unique to their daily physical status. ¹⁵ The use of a bicycle ergometer has also demonstrated beneficial effects on PCPs' physical capacity. ²¹ Yoga, an increasingly popular activity, has shown to increase disease acceptance, boost daily energy, reduce fatigue, and improve trends in pain and relaxation. ²² Furthermore, group yoga has been shown to provide psychosocial benefits to PCPs, as they are able to attend classes with individuals with a similar condition. ²³ This may be of particular importance for AYA-aged PCPs, as forming friendships, maintaining peer support, and sharing similar experiences has been found to help AYA-aged cancer survivors cope with psychosocial problems, and may help them overcome their profound sense of isolation.^24,25

With respect to location, the majority of adult PCPs appear to prefer a home-based PA program. ¹⁰ Allowing the PCP to perform their PA program at home has been recognized as an approach to maintain the patient's dignity and autonomy. ¹⁵ Home-based walking programs have demonstrated high adherence because they have been receptive to and respectful of the patient's needs (e.g., progressive fatigue and physical disability) and preferences (e.g., can be completed alone). ¹⁰ Importantly, it appears that PA is a structured event that PCPs can look forward to and reminds the patient they still have a life to live, despite facing a palliative diagnosis. ²⁶

As no similar studies exist for AYA-aged PCPs, we look instead to the work conducted with AYA-aged cancer survivors.^8,27 In the younger cohort, PA programs performed in a supervised environment, such as a hospital or university facility, have fostered the strongest PA outcomes (e.g., physical and emotional well-being). ⁸ Improvements in functional fitness found in a professionally supervised environment may be partially attributed to the ability to immediately address any concerns or problems that may arise, consequently reducing survivor fears associated with participating (e.g., injury, increased pain or fatigue, inability to perform activities). Moreover, the one-to-one feedback and peer support provided in a group-based setting may foster greater engagement and a sense of belonging. ⁸ While much is left to be explored, any PA intervention should be tailored to the individual and maintain a balance between the patient's needs (e.g., treatment and fatigue symptoms), preferences, and ability. ¹⁰

Summary

Recognizing both the importance of QOL and that pain and symptom management are ranked as important palliative care priorities for AYA-aged cancer patients, it would seem appropriate to incorporate a therapeutic intervention that could improve or maintain QOL and control pain.^3,4,13,15 To date, the literature concerning PCPs and PA shows promise, with beneficial improvements in QOL for adult PCPs.^{3,5,9–11,17,19,21,22} Although still in its infancy, researchers have found that adult PCPs who participate in a PA program gain feelings of increased energy, autonomy, and independence, and that PA can provide PCPs with situations where they can set goals and experience an environment of normalcy during a very challenging time.^9,15,19 PA has also been shown to help PCPs accept their diagnosis ²³ and gain a greater sense of autonomy. ¹⁹

Palliative care models for both adults and children are similar to those of the AYA-aged cancer patient; however, various physical and psychosocial factors underlie why these groups are distinctly different. To date, there is no direct evidence in the literature to suggest that a PA program for AYA-aged PCPs would be beneficial in improving QOL or pain and symptom management. However, studies of adult PCPs and AYA-aged pediatric cancer survivor populations suggest that there are benefits to including PA in the overall supportive care plan.^{3,5,9–11,17,19,21–24,26} These findings give reason to believe a PA program for AYA-aged PCPs would be a meaningful addition to current models of palliative care, and further study is encouraged.