Table 2.
Summary of Subthemes and Illustrative Quotes for Impact of PD on Everyday Life Theme
| Subtheme | Content | Illustrative Quote |
|---|---|---|
| Intrusion of PD | ||
| Space and weight of cyclers and supplies | Bags and PD cyclers are heavy to move and difficult to carry and take up a lot of storage room. | “Those bags, yeah they’re very, very heavy… if I carry them a bad way, when I lay down the lower part of my back will hurt.” Patient 319 (57 y-old female patient who lives alone, RM user) |
| Obtrusive cycler noise | The noise of the machine was rarely mentioned but mattered to some participants. | “It would be nice if it was quieter, that’s my biggest issue is if it had somewhere to sit that maybe absorbed some of the vibration so it would be quieter at night. I wear ear plugs.” Care partner 534 (45-y-old female care partner who assists with spouse, non-RM user) |
| Patient Autonomy and Confidence | ||
| PD affects patients' feelings of self-confidence and limits abilities to do some things. The availability, sensitivity, and nature of support matters. | “I mean I was very independent, I went on all these. .. trips by myself and now, I have to have somebody with me, and fortunately this son is self-employed and he’s enjoyed the trips a lot so, he’s been able to go with me, but if he weren’t able to go, I probably wouldn’t be able to go.” Patient 525 (79-y-old female patient who lives alone, non-RM user) | |
| Management of PD Treatment | ||
| Determining patient suitability for PD at home | Factors identified by many HCPs included home environmental factors, personal attitudes, abilities, motivation, and the distance between home and the clinic. A few HCPs factored in effect of RM on treatment adherence while a few HCPs without RM experience considered availability of informal support. | “We do home visits with all the patients to make sure there’s…not a lot of clutter, not a lot of dirt, make sure that they’re able to do their treatments and that there’s no risk of infection. So we do that at least once a year.” HCP 680 (33-y-old female PD nurse, RM user) “So it’s more about what makes this family or home environment not make home therapies work… but actually they’re generally the big questions of `which home therapy would we consider?’ not `why would we consider home therapy?’ it takes a lot for us to rule a home therapy out.” HCP 269 (41-y-old female pediatric nurse from the UK, RM user) |
| Expense and time related to treatment | Additional costs related to travel to clinic, storage space, or time required for dialysis were mentioned by some participants. | “...we can do things for them remotely without them having to actually come in, it’s wonderful….and I guess for the most part I think they would like it because now they don’t have to make the trip in” HCP 505 (63-y-old female nephrologist, RM user) |
| Workload and related systems | Patients and care partners described changes to employment and domestic responsibilities in accommodating PD while HCPs talked about the flexibility needed in their work to meet patient and PD needs. Overall there was an impression that RM might reduce workload for patients/care partners and save time and improve existing systems for HCPs. | “I think there would be a lot of little pieces that would add up to save time management and running around that could be better spent on education and other more important pieces.” HCP 163 (42-y-old female nurse, non-RM user) |
| Drainage of PD solution | A few participants mentioned the impact of pain after drainage, which may affect treatment adherence, so an ability to control the drainage step was desired. | “The problem is, for when it first starts, there’s a drain cycle, and you can’t bypass it…and, for me, it was one of the most excruciatingly painful things “…Patient 575 (24-y-old male patient, non-RM user) |
| Individualization of treatment | HCPs tailor PD treatment in response to individual variations in laboratory tests, changes in weight and blood pressure, and patient perspectives. Generally, because RM rapidly provides the patient and clinic staff with detailed treatment data, individual profiles and treatment can be made more quickly. | “You find out what the problem is for that patient…do they hate the fact that their thirst is driven so much by the strong bags, and is that why they’re non-adherent sometimes? And then you try and address that by maybe optimizing their drains or do they hate …that they’re getting so many alarms overnight, and that’s why they’re non-adherent, so then instead you address the alarm parameters, but you put a different measure in place to make them safe in the morning. So it’s about, if you have that time to invest and to really get to understand each individual patient, then you can make a huge difference.” Nurse 269 (41-y-old female nurse, RM user) |
| Patient Travel and Outings | ||
| A major impact of PD on patients and their close family concerns the constraints treatment has on their ability to spontaneously travel and participate in outings; HCPs are very concerned about this too and make a lot of effort to minimize this. | “I want them to experience life and not let dialysis interfere with their lifestyle, so we bend over backward…, just so they can travel” HCP 505 (63-y-old female nephrologist, RM user) “He’s not able to really go to things in the evenings. I still participate … with the kids or church activities or…any that might conflict with him setting up his treatment, so it’s limited. Care partner 511 (40-y-old female care partner who assists with spouse, RM user) |
|
Abbreviations: HCP, health care provider; PD, peritoneal dialysis; RM, remote management.