Around 75% of myeloma patients have evidence of myeloma bone disease at diagnosis and most develop it at some point. Bisphosphonates - pamidronate, sodium clodronate and zoledronic acid - have revolutionised the treatment of myeloma bone disease and form a significant part of the myeloma treatment pathway. It is therefore important to understand patient perspectives of and preferences for this important treatment.
To understand the information patients receive from clinicians and the impact this has on their understanding of bisphosphonates, to establish what patient preferences are for how and where they receive bisphosphonates and to determine whether patients are satisfied with the level of decision-making input they have about their bisphosphonate treatment.
Patients were asked to complete a 36 question survey, devised by Myeloma UK, which was available in paper copy and online. 606 patients responded to the survey of which 95.3% had received bisphosphonates. When asked about the information they were given by their clinicians when prescribed bisphosphonates, 81.7% received a verbal explanation, 23.7% received written information and 2.7% received details of a website/helpline. 30.6% used a product leaflet and 30.1% sourced a patient organisation information sheet. 80% of patients thought the information was ‘easy to understand’. When asked why they had been prescribed bisphosphonates, patients accurately reported that it was ‘to strengthen the bones’ (82.5%), ‘to delay the progression of myeloma’ (28.7%) and ‘to prevent/reduce high levels of calcium in the blood’ (15.7%). 16.6% of patients wrongly thought that bisphosphonates were prescribed ‘to heal the bones’ and 5.8% had no understanding of bisphosphonates.
51.7% of patients received their current or last bisphosphonates ‘by monthly infusion in hospital’ and 39.1% ‘by tablet form at home’. 9.2% stated ‘other’ referring to more flexible methods of prescribing. When asked how they would prefer to receive their bisphosphonates, 46.5% selected ‘by regular visits for infusion in hospital’ and 41.1% ‘by daily tablets taken at home’. Patients who preferred to receive bisphosphonates ‘by regular visits for infusion in hospital’ reported this was due to ‘confidence in quality of care in hospital’ (80.7%), ‘there is medical support on hand’ (54.4%), ‘it keeps a check on my myeloma’ (64.9%), ‘I prefer monthly rather than daily treatment’ (52.1%) and ‘I can get my blood tests done at the same time' (59.1%). Patients who preferred to receive bisphosphonates by ‘daily tablets taken at home’, reported this was due to ‘convenience’ (93.3%), ‘ease’ (71.4%), ‘it reduces hospital visits' (61.6%) and allows them to ‘avoid infusions’ (37.9%).
On a scale of (1) no input and (5) full input, patients gave the level of decision-making input they had over how and where to receive bisphosphonates an average rating of 2.1 – 64.6% rated (1), 6.2% rated (2), 4.9% rated (3), 2.8% rated (4), 21.5% rated (5). When asked if they were satisfied with this level of input, 79.5% of patients were satisfied, 20.3% would have preferred more input and 0.2% less.
Patients who received information about bisphosphonates were generally satisfied it was good quality and helped them understand why they were prescribed bisphosphonates. A significant proportion of patients did not receive a verbal explanation and/or did not receive written information from a clinician or source information themselves, which explains the high percentage of patients who did not understand why they had been prescribed bisphosphonates.
Patients have different and individual preferences for how and where they want to receive bisphosphonates. Patients were polarised between their preferences for receiving their bisphosphonates intravenously or by tablet form and when responses were cross-referenced, their preferences were approximately correlated with their most recent bisphosphonate. The survey also shows approximately 1 in 5 patients would have preferred more decision-making input on their choice of bisphosphonate treatment.
In the UK, there is variation in uptake of oral and intravenous bisphosphonates despite evidence showing improved efficacy of intravenous zoledronic acid over oral sodium clodronate. Further investigation is warranted to determine the link between patient's preferences and uptake of different bisphosphonates.
Low:Novartis UK Limited: Research Funding. Morgan:Novartis UK Limited: Research Funding.
Asterisk with author names denotes non-ASH members.