The burden of myeloma treatment routes and locations on patients and families: Insights from a Pan-European survey

Abstract Introduction Myeloma patients may undergo multiple treatments over the course of their disease. Treatment specific factors such as the location, mode and frequency of administration, as well as the burden treatment places on the patient and their family, may influence decision-making and quality of life. This study aimed to i) generate evidence on how myeloma patients feel about how, where and by whom their myeloma treatments are administered, and ii) understand the differential impact of myeloma treatment routes and locations on patients and family carers. Methods A pan-European online survey was distributed via a network of myeloma patient organisations in eight languages to gather i) demographics, ii) treatment experience, iii) myeloma health state, iv) socio-economic factors, v) burden, and vi) attitudes to treatments. Attitudes were rated on a Likert scale from 1 (wholly negative) to 10 (wholly positive). Treatment burden was rated across seven domains for patients and family carers (frequency, effort, precautions, emotional, daily activity, family life, and financial) on a scale of 0 (no burden) to 10 (considerable burden). In addition, patients were asked to rate the physical burden of treatments. Total burden for each treatment type was summed across all burden domains with a maximum possible score of 80 for patients, and 70 for family carers. Independent-samples median tests were conducted to compare patients' and carers' responses. Eligible participants included people diagnosed with myeloma by a health professional, or people who were supporting someone diagnosed with myeloma, who were aged over 18 and who had experience of at least one treatment or were currently receiving their first treatment. Results The survey achieved 1070 responses (169 family carers and 901 patients). The mean age of patients was 62 years (range: 32-88), and family carers was 52 years (range: 21-79). More female participants responded than males (53% of patients and 79% of carers were female). -Patients' views Patients rated oral treatments at home most positively (Median (Md)=9), but ‘at home’ treatments were not universally the most positively rated location across treatment types. Subcutaneous treatments at home were rated less positively (administered by self (Md=6), family carer (Md=6), or health professional (Md=6)) than subcutaneous out-patient (Md=8) or in-patient administration (Md=7). Treatment burden was rated highest for intravenous treatments (Md=26) and lowest for oral (Md=14). -Family carers' views Family carers also rated oral treatments at home positively (Md=8), but equally to at-home subcutaneous from a health professional, and out-patient administration of subcutaneous, intravenous and infusion treatments. The least positive ratings were for medicines that require a hospital stay (Md=6), and at-home subcutaneous self-administered (Md=6) and family carer-administered (Md=6). The burden of treatment on family carers was rated highest for infusion treatments (Md=42) and lowest for oral (Md=25). -Comparisons between patients and family carers Attitudes to modes of administration were not significantly different for patients and family care. However, ratings of the burden of treatment types were significantly different between patients and family carers. Family carers rated the burden significantly higher than patients for oral (p.001 to p=0.14), subcutaneous (p<.001) and infusion (p<.001 to p=.006) treatments. Conclusions The results highlight the importance of considering both patient and family perspectives in treatment planning and support services. Healthcare providers should be aware of the impact of treatments beyond clinical efficacy, on patients' daily living, emotional well-being and quality of life. At-home treatments need to be carefully supported to ensure patients, and their families, are coping comfortably and lessen their daily burden. The administration of therapy a patient endures during their disease can have a profound effect on family members and there is a lack of dedicated, ongoing support for them. Discussions between myeloma patients, families and their health care teams should include information about treatment mode and location and prioritise patients' and families' needs to support shared decision-making.