Patients experience and perceived concerns regarding obtaining and taking prescriptions for head and neck osteoradionecrosis

The main components of the medical management of osteoradionecrosis (ORN) are combinations of clodronate, pentoxifylline, tocopherol, sometimes with antibiotics or chlorhexidine rinses. Anecdotally in the Cheshire and Merseyside network, patients report having difficulties getting and taking their prescription, hence the aim was to survey patient experience of obtaining prescriptions, administration of the medications, and side effects. Patients prescribed tocopherol and pentoxifylline from the pharmacy department’s record
database from the period of January 2019 to June 2020 were invited to take part in a semistructured telephone survey. Sixteen patients out of a total 33 (48%) responded. 11 patients (69%) reported some issue collecting their repeat prescriptions, commonly low stock of medicines in community or unwillingness of GPs to prescribe. One patient permanently stopped treatment owing to
difficulties obtaining medication, whilst for three there were temporary gaps in treatment. Difficulty in administration of the medications was reported in 7 patients (44%) patients, most commonly in those with pre-existing dysphagia. Issues related to difficulties in swallowing the large pentoxifylline tablet or with the vitamin E capsules. Patients crushed the medications, but this was associated with gastrointestinal side-effects in one patient who had to stop treatment. One patient stopped chlorhexidine mouthwash due to oral soreness. In conclusion, medical management of ORN is well tolerated by patients. There is difficulty
for patients getting prescriptions in primary care. Few patients need to stop taking the medication due to difficulty in administration or side-effects. More patient information would be useful for all concerned.