One of the key findings is the low PA level in our cohort of real-world MM patients. Although a different measure of self-reported PA was used, our figure of 25 is much lower than the 67% of U.K. general population who were considered active (ages 75–84–53%, age 85 + − 31% active) . These low levels of PA are hardly surprising; in addition to the fear of injury, related to their bone disease, MM patients suffer with a considerable symptom burden, related to their older age and co-morbidities, as well as treatment related toxicities that include peripheral neuropathy. Barriers to exercise are usually multifactorial, but neuropathy was featured in 20% of our participants, alongside more common cancer-related symptoms such as fatigue and pain. Peripheral neuropathy is a common and often painful side effect of some of the commonest agents used to treat MM, bortezomib and thalidomide. Similar to our findings, Craike et al  reported that most barriers were related to symptoms of MM and side effects of treatment. The high burden from disease symptoms and long-term side effects from repeated therapies inevitably have a negative impact on patients’ QoL, which is reflected by the lower mean QoL scores in our cohort compared to reference scores from the general population.
It is also noteworthy that while most patients had low levels of PA, the majority indicated they would like to increase their PA levels. This suggests an awareness of the possible benefits of exercise, and an unmet survivorship need. Over half of patients wished to receive PA advice from a health care professional, suggesting that one of the barriers to exercising may be lack of confidence that it was safe to do so. This echoes themes reported by Groeneveldt et al and Koutoukidis et al [6, 7], where patients were more confident to exercise under supervision by a physiotherapist experienced in working in myeloma, and reflects the need for development of specialist physiotherapy workforce for this complex patient group. Oncology health professionals have reported lack of clear guidelines and not being the right person to give advice regarding lifestyle behaviours including PA .
Fatigue is a ubiquitous problem in cancer patients, but in MM, it is compounded by the use of steroids in almost every treatment line, bone pain and fractures, and the autonomic neuropathy that accompanies many anti-myeloma drug classes such as the proteasome inhibitors and the immunomodulatory drugs. Almost half of our surveyed patients (49%) were classified as clinically fatigued according to their FACIT-F scores and unsurprisingly, these patients had significantly lower GLTEQ scores than those who were not clinically fatigued (p < 0.001). Patients with fatigue are often advised to, or believe it is best, to rest to conserve energy. Excessive rest and reduction in PA results in loss of functional capacity through deconditioning. Deconditioning and increasing effort to undertake daily activities, further exacerbates fatigue. Disrupting this cycle through exercise is key to its management . The well documented beneficial effects of exercise on cancer-related fatigue, and on bone health, further highlights this unmet need in MM patients.
We observed that higher levels of PA were associated with better QoL, in accordance with other previous studies [3–5]. Because MM is incurable, patients have lifelong follow up in outpatient clinics, where emphasis is often placed on the results of myeloma biochemical markers rather than patients’ survivorship needs. The results of this service evaluation study highlight an unmet need to develop a more holistic model of care, in which PA is assessed and promoted appropriately, with professional support from physiotherapists as appropriate. It is also important to identify perceived barriers to improving PA and address them proactively, such as pain and neuropathy management. This is in line with MM supportive care guideline , which states that regular PA should be encouraged from the start of diagnosis to ensure that prehabilitation and rehabilitation are an integral part of every line of treatment. To achieve this, it is key that both the patient and the clinical team are educated on the individual benefits and risks of exercise. To promote survivorship and self-management, our team designed and currently runs a pilot multidisciplinary team (MDT) MM clinic involving a doctor, a nurse specialist and a physiotherapist, with wider support from other MDT members if needed. Tailored PA advice is given in each consultation and patients are encouraged to set achievable goals, which will be reviewed in the next visit. They are also signposted to various survivorship tools to help maintain their physical and psychosocial well-being. Data on patient reported outcomes and patient experience are being collected as part of a research project (IRAS: 262599) to evaluate this alternative model of care.
A more formal way to promote PA in MM patients is to deliver supervised exercise programmes, which, when administered with appropriate screening procedures and by specialist personnel, have been shown to be safe and feasible . Specialists should be involved so that MM related symptoms and treatment toxicities are taken into account in the prescription of individualised programmes. With limited literatures on MM and PA available, more high-quality, large randomised studies are needed to evaluate the impact of PA on different health parameters of MM patients. Research protocols such as the PREeMPT study  and the PERCEPT myeloma , which look at prehabilitation for patients undergoing autologous haematopoietic stem cell transplantation, will provide information to support for the use of tailored exercise intervention in the future. Although such programmes may be a positive way to influence PA, less than a third of our surveyed patients (28%) preferred a face-to-face session with a healthcare professional to receive PA advice. This suggests that formal exercise classes may not suit all MM patients and therefore the clinical team needs to devise more flexible ways to promote PA depending on patients’ preference, especially when digital healthcare technologies are now becoming more available and increasingly used.