Assessment of the perceptions of health-related quality of life in Greek patients undergoing automated peritoneal dialysis with remote monitoring: A qualitative study

2.1 Study design

The purpose of this study was to understand in depth the link between APD and self-reported QoL. For this reason, a semi-structured interview was chosen as a research tool. This method allows the researcher-participant interaction regarding predetermined aspects of the subject under study, while on the other hand is an auxiliary tool that promotes the free expression of the stakeholders [26]. As a semi-structured interview, it promotes a nondirective discussion, the interest is focused on the subjective experience of the individual, while the opportunity is given to approach the perceptions of the participants [27]. The study adhered to the standards of the Consolidated Criteria for Reporting Qualitative Research (Supplementary File) [28].

The interview guide was purposely designed to explore patients' experience with different aspects of life and domains of QoL and it was conceptually based on the Kidney Disease QoL Instrument, the most widely used tool to measure health-related QoL in chronic kidney disease research [29]. This tool showcases an increased psychometric reliability [30, 31] that measures QoL in nephrological patients. Moreover, the interview guide included some questions specific to APD, to understand the perceptions of the QoL of patients undergoing this method of kidney replacement. As a result, three thematic pillars emerged for the interview: (a) general health status, (b) health-related QoL, and (c) perceptions of APD.

The interview included 24 questions and basic demographic data (gender, age, employment status, educational level). Examples of questions are: “How do you assess your current state of health in relation to your illness,” “How do you think APD is related to your work obligations?”, “How do you view remote monitoring as a practice?”. The questions were open and in a logical sequence, while many of them were interspersed with additional questions or prompts that were deemed useful by the researcher.

2.2 Participants

The sample was purposive and consisted of individuals diagnosed with “Chronic Kidney Insufficiency” N18 according to ICD-10 and received APD as treatment. All patients were monitored by the PD Unit of a University Hospital. Consequently, the sample was focused, and the sampling was targeted. The study was conducted in 19 people (12 males/seven females) with a mean age 60.89 ± 12.02 years and an age range between 38 and 85 years, while all patients maintained the right to legal action [27]. No participants dropped out of the study. However, some declined due to advanced age. The patients' average time on APD was 46.11 ± 36.44 months. The demographic and clinical characteristics of the study population are shown in Table 1.

2.3 Process of interviews

The initial approach and briefing were conducted by the clinic staff who introduced the researchers. Two of the authors, KK and SN, who have experience in qualitative research, were the ones who interviewed the participants. The interviewers had no personal relationship with any of the interviewees. During the procedure, participants were free to answer only the questions they wanted, and they were able to leave whenever they chose to. Due to the pandemic, interviews were held by telephone at times convenient to the patients which were settled after agreement with the doctor. For this reason, the research material was short, so as not to tire the interviewee. Therefore, patients had to enter a telephone number in the consent form. Only the researchers who conducted the interviews had access to these data. In addition to the forms, during the calls it became clear that the discussion was recorded, that transcription and coding of the interviews would follow, and that the audio files would be deleted. The interviews lasted an average of 45 min and took place between June and July 2021. All participants willingly completed the interview process, and at the end thanked the researchers for the interesting discussion.

2.4 Methodological analysis

All interviews were analyzed using interpretative phenomenological analysis [32]. The main goal of this approach is the detailed investigation of how people experience the world, as well as the interpretation of the personal perspective of everyone through the careful processing of each case before the generalization of the results [33]. interpretative phenomenological analysis consists of a series of defined steps, aiming at reducing the initial number of codes by creating new and fewer categories, which summarize the meaning of the original ones [34].

Based on these defined steps, each interview was initially transcribed verbatim, including pauses, body language, or other spontaneous manifestations. The lead investigator reviewed and reread the transcripts before assigning a series of codes to them, to obtain a complete understanding of the content and to produce indicative comments for each interview. KK and SN independently coded a sample (n = 6) of interview transcripts. These were compared, and disagreements were addressed by discussion among the coders, as well as with additional members of the study team when needed. Each code briefly expresses the researcher's interpretation of a particular piece and emerges from the text itself, without being imposed in advance by the research team. In the end, 1264 codes were collected from all the interviews, which were grouped into 468 codes and gradually led to 25 more general categories, depending on their meaning, similarities, and differences. The grouping of the latter led to five higher thematic sections, which summarized the meaning of the subcategories and their initial codes as shown in detail in Table 2. As a basis for justifying the results, there are excerpts from the patients' interviews, without any reference that identifies them.

3.1 Treatment—Free daily routine

Participants indicated that the main advantage of the APD treatment is that it is conducted overnight. As a result, they were able to work, exercise, socialize, feel more independent and autonomous during the day. In fact, patients assessed as particularly useful that they can perform the APD according to their own needs and schedules with flexibility to adjust around their activities. This allowed more control and agency over treatment—especially fitting treatment to life rather than life to treatment: “for example, if you want to go out with friends and stay until midnight, you know that you can connect to the machine later and disconnect later in the morning.” The treatment–free daily routine was reinforced by the infrequent visits to hospitals or PD units. Furthermore, the portability of the APD device was convenient for participants who were traveling frequently.

Freedom was also expressed as being clear of the aggravating hemodialysis (HD)-related symptoms and HD side effects. Most patients who had previously undergone HD, were reminiscent of the intense fatigue and exhaustion they felt post HD session, which interfered with their daily activities: “after hemodialysis I was like dead, exhausted, I could not get out of bed.” Contrastingly, participants who had undergone continuous ambulatory PD felt physically better, however their daily life pertained to treatment matters, and they could not self-manage their therapy. Overall, patients seem to benefit from a treatment-free and meagerly symptom-free daily routine that is characterized by less intrusive impact on lifestyle and cannot be accomplished through other methods of dialysis.

3.2 Sleep disturbances

During the initial phase of APD treatment sleep disturbances are common. However, most participants in this study reported that their sleep improved during the first 2 months of treatment. Τhe length of the connection line led to this improvement, since it allowed change of postures during sleep, as well as free movement around the room: “many do not think about the connection line, but this is what saves us, because you can get up a little from the bed.”

However, for other participants sleep quality was negatively affected by catheter movements in the peritoneal cavity due to change of postures throughout sleep. These movements hamper APD during fluid exchange, rather than when the solution has reached the peritoneum: “I feel like something is moving, I get bothered when liquids come in and out, not when they are inside me.” This condition results in the perception that the dialysis' efficiency depends on the sleeping posture, with specific postures leading to better circulation of the solution during the entry and drainage of solution in and from the peritoneal cavity. In any case, patients with ESKD seem willing and capable to accept and gradually adjust their sleeping habits to enjoy the advantages of APD prescription.

3.3 Remote care

All participants highlighted the importance and value of remote monitoring of APD. According to them, professionals from the healthcare company that had provided the APD machine were available throughout the whole day, helping whenever there was a need: “I had the opportunity to call them at 2 at night because they turned on lights and made some unknown noises and the guys there served me very well.”

APD machine alerts the patient in case of a problem, however remote monitoring encapsulates an additional safety net that enhances individuals' feelings of control of their disease and treatment. The continuous monitoring of the treatment and the recording of basic biometric data allow the physicians to modify the treatment in a short period of time without the clinical examination of the patients, requiring physical presence. This was extremely useful during the COVID-19 pandemic. Most study participants claimed that their condition was monitored safely, without the risk of being exposed to the SARS-Cov-2 virus: “In the beginning I was scared of the virus, and I asked from the doctor to monitor the device and be informed about my dialysis.” Furthermore, some participants underscored that remote care is cost and time effective, since they do not have the financial burden from travel expenses to hospitals. Lastly, remote monitoring facilitates further familiarity with APD processes, as doctors educate patients on their disease and its treatment. This practice strengthens doctor—patient relationship and reinforces patients' beliefs about their capability to understand the disease and handle their treatment: “Doctors are heroes, they are always willing to show us what to do, I feel they are like my significant others, because they are attentive and respectful towards us.”

3.4 Limitations of PD treatment

Participants underlined some limitations of the APD treatment, such as dietary restrictions during the afternoon and evening hours which were issued by their attending physicians depending on the existence of other comorbidities. In any case, they reported that undergoing APD with full bowel may cause severe abdominal pain and a feeling that the APD has not been completed properly. Moreover, participants highlighted the fluid restrictions which lead to difficulties during the bowel movement and to increased feelings of thirst, especially during summer season. In a nutshell, participants stated that they meticulously observe and record their food and fluid intake, for the APD to be conducted efficiently: “I pay close attention to what I eat and what I drink, do not run away because then I will have an issue with my treatment…from the hospital they told me to write it all down in my notebook.”

Many participants were concerned about the constant feeling of increased size in the abdominal area: “When I look in the mirror during the day I have a slight bloating, but if you do not know the disease I have, then you do not notice it.” This statement indicates that the presence of PD catheter affects the perception of their body image, a situation that is offset by certain types of clothing. According to most patients, the APD advantages, including the completion of treatment during sleep, counterbalance the difficulties they are facing.

3.5 The dimension of chronic disease

In the present study, kidney failure, as a chronic disease, was related to changes in self-perception and the creation of a new self-identity: “I am no longer the same person, so many things have changed in my life and habits, I had to process new information.” Some participants seemed to experience an incongruence between the person that were before and after the disease, and a difference between them and their healthy significant others. According to the participants, the identity of being “chronically ill” constrains their social life and their involvement to relationships: “I carry my illness as a burden every day wherever I go, whatever I do, it pervades everything.” Most participants consider that their autonomy is impeded, since they are dependent on their caregivers who have a voice about their decision-making.

Lastly, the life-threatening dimension of the disease is ubiquitous and manifested in several aspects of daily life: “every day we discuss about my kidney failure, every day we try to deal with the fact that I will eventually die.” Thus, it seems that not only therapy itself, but also social and family relationships as well as working life are affected by the sense of decay and deterioration instilled by the ESKD.