Burden of treatment
Through consultation with its developer, the authors of the current study selected domain scales and slightly modified the original PETS measure (version 2.0), tailoring it for use in this population. PEH were not involved in this process. The original PETS measure was developed to assess treatment burden in patients with chronic health conditions requiring self-management.Version 2.0 of the PETS consists of 60 items divided into 14 content domains (12 multi-item burden scales and two single-item indicators of medication bother): medicines (The five items of the ‘medical and healthcare expenses’ domain were removed as the content is not relevant to a Scottish population where health care is free at point of access. The three items of the ‘diet’ domain were also removed, as this content was covered elsewhere in baseline data collection. As no single global treatment burden score is generated for the PETS, it is permissible for users to select for use only those domain scales that are most relevant to their study. One item from the ‘medical appointments’ domain was removed as it was deemed similar to a previous question (‘how easy/difficult is it to schedule medical appointments?’); this avoided repetition for the participants in an otherwise lengthy baseline assessment. Participants were also asked to categorise why it was difficult to attend medical appointments to gain information to identify barriers as to why participants may struggle to access their appointments. A single item was added to the ‘medical equipment’ domain to assess how easy/difficult it was to obtain medical equipment. This was added because PEH experience more barriers in accessing health care and this was seen as useful information to add when looking at treatment burden.Scoring for the domains that were modified (that is, medical appointments and medical equipment) was adjusted slightly to account for the item changes, but followed the same general scoring procedure of the original PETS measure.Aggregate summary scores for ‘workload and impact’ were also calculated.