A survey of quality-of-life tools used in the routine care of patients with multiple myeloma

Myeloma is a relapsing and remitting bone marrow malignancy most frequently diagnosed in people over the age of 65 years (Myeloma UK, 2023a). It accounts for 2% of all new cancer diagnoses and 15% of all haematological malignancies. The incidence is higher in men (58%) than in women (42%) with more than 5900 new cases being diagnosed per year in the UK (Cancer Research UK (CRUK), 2023a; Myeloma UK, 2023a). Today there are more than 24 000 patients living with myeloma in the UK (Myeloma UK, 2023a).

Patients' outcomes may be affected by age, tumour burden, their genetic profile and treatments they receive (Ramasamy et al, 2021). Substantial improvements in both progression-free survival and overall survival have been observed in multiple myeloma over recent years (Rajkumar and Kumar, 2020). These improvements are associated with the introduction of new treatment options that have less toxicity and achieve a more rapid control of the disease at the outset than previous treatments, as well as an emerging treatment paradigm of continuous therapy or long-term maintenance therapy (Kumar et al, 2008; Ramasamy et al, 2021). A full list of current treatment options is available from Myeloma UK (2023b).

The aim of treatment is to bring the myeloma under control; to treat, prevent or minimise pathological effects (National Institute for Health and Care Excellence, 2018). This is done by using various combinations of anti-myeloma therapies and to improve quality of life (QoL) by treating the biological symptoms and avoiding disease-related complications associated with this cancer.

With improvement in treatment, 1-year age-standardised survival for myeloma has increased from 37% in 1971-1972 to 78% in 2010-2011 in England and Wales (CRUK, 2023b). Ongoing drug development will continue to improve survival; however, ‘survival’ as an objective measure does not reflect patients' perspectives of their long-term disease progression (Brenner et al, 2009). Patients undergo several lines of treatment during their care, with a variety of drug combinations, which has led to a growing number of patients who have already been exposed to many different myeloma treatments in haematology clinics across the UK.

Despite the therapeutic advances, myeloma remains incurable, and most patients' disease will eventually progress while they are on treatment. Throughout, patients experience short- and long-term side effects of treatment such as pain, neuropathy, gastrointestinal upset, fatigue, mood changes and medication burden (Cuffe et al, 2020; LeBlanc et al, 2021). With improving myeloma survival times, the adverse effects of treatment, as well as the disease itself, impact on QoL for longer (Efficace et al, 2017). Myeloma is often a debilitating and challenging disease to live with and all patients are at risk of psychological distress at any time during their care (Cuffe et al, 2020; LeBlanc et al, 2021). Recognition of psychological problems through effective assessment followed by appropriate interventions can prevent symptoms amplifying, promote psychological wellbeing and help make the most efficient use of healthcare resources (Hulin et al, 2017). If the psychosocial needs are overlooked or not enquired about, factors identified by patients as important may not be addressed by their clinical teams. Supporting a patient therefore requires an understanding of prognosis, the likely outcome from treatment, the patient's fitness for treatment and their wishes, all of which change over the months and years of their treatment owing to the relapsing-remitting nature of myeloma (Kvam and Waage, 2015).

Multiprofessional clinical teams see increasing volumes of patients because of early diagnosis, ongoing and improving therapy and the chronic nature of the disease. Thus, stretched clinics have growing numbers of patients at various stages of their myeloma journey and, as such, there may be a tendency to treat and monitor the disease rather than the whole person. This may encourage a focus on laboratory data and the physical health of the patient, leading to their psychosocial needs being overlooked or not investigated, over this length of time.

One established way to ensure patients' concerns are addressed is the collection of patient-reported outcome data using patient-reported outcome measures (PROMs). The collection of which can be facilitated by health professionals in routine care. It has been found that use of PROMs in oncology research results in improved physician–patient communication, early detection of progression, improved management of side effects of treatment, improved compliance with treatment, and identification of patient concerns and unmet needs (Basch et al, 2016; Myeloma UK, 2018).

Understanding people's needs and concerns and how these impact on their QoL, is recognised as a crucial part of care (LeBlanc et al, 2020). Historically, QoL data have been collected in the context of research studies; to date, such data have not been used to inform patient care or treatment (Osborne et al, 2015; Goswami et al, 2016; Galinsky and Richard, 2019; Goswami et al, 2019; 2020; LeBlanc et al, 2020). Despite research data suggesting PROMs and QoL data can be used to enhance patient care and outcomes (Boland et al, 2014; Basch et al, 2016), at the time of writing there has been only one UK patient-focused study to understand patients' views on collecting and using data to support the routine care of patients with multiple myeloma (Galinsky and Richard, 2019). The authors therefore undertook a UK-wide survey of health professionals.

Methods

The aim of the survey was to evaluate standard NHS services by obtaining a snapshot of tools used to collect QoL data from myeloma patients. Two authors (SK and SH) developed an online questionnaire in SurveyMonkey. It asked questions about which centres collected QoL data, what tools were being used in the routine care of myeloma patients, by whom and at which time point (Table 1). Ethical approval was not required because the questions asked were assessed as being an audit of PROMs use and participation was anonymous and voluntary.

The link to the survey was sent to haematology clinicians and specialist nurses across the UK via distribution through Bloodwise, Myeloma UK, CRUK and UK Oncology Nursing Society (UKONS) members between February and April 2018, as well as those registered for the British Society for Haematology annual meeting in April 2018. A paper version of the same survey was disseminated at the spring 2018 UK Myeloma Forum.

Results

Twenty-six responses were received from health professionals at various NHS trusts across the UK. Table 2 shows the majority (22) of respondents reported not using any measure, three reported using a PROM and one reported using a holistic needs assessment (HNA) (Macmillan Cancer Support, 2022).

The centres that reported using a PROM all used the Myeloma Patient Outcome Scale (MyPOS) (Osborne et al, 2015; Ramsenthaler et al, 2017; Myeloma UK, 2022), of which one centre used MyPOS in addition to the Functional Assessment of Cancer Therapy - Bone Marrow Transplantation (FACT-BMT) (FACIT, 2013), European Organization for Research and Treatment of Cancer (EORTC) Quality of Life of Cancer Patients (QLQ C30) (EORTC Quality of Life Group, 1995), or EORTC Quality of Life Multiple Myeloma (MY-24) (Stead et al, 1999). One centre used the MyPOS and the Quality-of-Life Index (Ferrans and Powers, 1985).

When measures were used, they were completed by patients on paper or electronically, before, during or post clinic appointment, but not at set points in their care pathway. One centre reported that the clinical nurse specialist ‘calculated responses to the PROM and made plans for what to do next’. One centre reported that they did not see the need to do a PROM because they use the Macmillan Holistic Needs Assessment (Macmillan Cancer Support, 2022).

Discussion

Despite this being a single time point measure, the survey showed poor use of PROMs.

Where a PROM was used it is unclear if or how it was used to modify care and who would routinely deliver the PROM and calculate the results. Although, the results of the survey provide limited information, it gives insight into the fact that some units have adopted practices to measure ongoing patient care and what matters to the patient instead of just the laboratory and physical data.

An additional challenge for practitioners is understanding the similarities and differences between a PROM and an HNA, why one would be used over another and what they bring to the service and the patient. The HNA is a component of the Macmillan Recovery Package (Rowe et al, 2014), which was rolled out to improve the support and QoL of people affected by cancer (Independent Cancer Taskforce, 2015). The HNA is an interview-based health needs assessment that involves answering a set of questions about all areas of the cancer patient's life, discussing answers with a key worker, and creating a care plan together. The HNA helps health professionals tailor support to meet the needs of cancer patients. The primary aim of the HNA is to identify patient needs and concerns rather than patient function and quality of life, which was what the survey was measuring (Macmillan Cancer Support, 2022).

Myeloma UK sought patients' opinions on completing PROMS. Through focus groups, Galinsky and Richard (2019) enabled six patients to review the acceptability of four different PROMs: EQ-5D-5L (EuroQol, 2009), the Hospital Anxiety and Depression Scale (HADS) (Stern, 2014), the Functional Assessment of Cancer Therapy – General (FACT-G) (FACIT, 2007) and MyPOS (Myeloma UK, 2022). The PROMs were reviewed in terms of their perceived relevance to their lives, ease of completion, language, and comprehensiveness. They found that PROMs helped patients voice their concerns about treatment, and that they could see the benefits of completing them as part of a routine clinic visit. Of the PROMS completed by patients for Galinsky and Richard (2019), the MyPOS and the FACT-G were preferred as these PROMs were felt to have greater relevance to their experience of myeloma and they preferred the language and content of these two tools.

More recently, Goswami et al developed a more generic blood cancer PROM, the Haematological Malignancy Specific Patient Reported Outcome Measure (HM-PRO) for use in standard clinical practice (Goswami et al, 2016; 2020). HM-PRO has been found to be as well received or acceptable in either a paper or electronic format (Goswami et al, 2019). However, despite the increase in the desire to understand patients' QoL, there is at present poor uptake of validated measures and limited evidence about the implementation of such tools.

Limitations

Despite significant effort on the researchers' parts and through supporting organisations that circulated the survey, the response rate was poor. It might be suggested that organisations not routinely collecting this data are less likely to respond to a survey asking about their use. However, the limited data means that the results can only contribute insights rather than the reality of the situation.

Implications for practice

Blood cancers including myeloma are a complex group of disorders that vary between acute and chronic stages. Unlike solid tumours, with this potentially long-term ‘hidden cancer’ there is a tendency for clinicians to focus on the numbers and not the person. There are various validated tools already available in blood cancer, including MyPOS and HM-PRO that have been developed with patients for use in standard clinical care that can support a more holistic approach to care.

Although there is interest in assessing QoL by using PROMs there is lack of evidence to demonstrate how its information translates to improving patient outcomes, patient experience and clinical decision making. Some centres obtain HNA and PROM data while other centres only complete HNAs, and this information is used in very different ways. PROMS seem to be more research-focused and QoL is a term more likely to be used in research than in routine clinical practice.

Conclusion

Further work is required to explore, through global published studies, the impact of PROMs/HNAs in myeloma services in different contexts, to understand the clinicians' and patients' perspectives on the use of PROMs/HNAs and make recommendations on the implementation of PROMs/HNAs to enhance myeloma care within the NHS in the UK.

KEY POINTS

• A UK survey found that there is limited use of quality-of-life tools in the routine care of myeloma patients
• When quality-of-life tools are used there is no set time points in the patient's care pathway for their use
• Data acquired from the quality-of-life tools are not routinely used to modify treatment or care
• More research is needed in this area to understand whether the use of quality-of-life tools would enhance myeloma patient care

CPD reflective questions

• How do you assess quality of life in your clinical area?
• Where could you use quality-of-life tools in your practice?
• How could the use quality-of-life tools enhance your patient care?