Background

There has been a considerable increase in elderly patients receiving renal replacement therapy (hemodialysis, peritoneal dialysis) for end-stage renal disease (ESRD) worldwide [1]. Peritoneal dialysis (PD) is performed at home on a daily basis by patients or their caregivers and strongly encouraged as it is cost-effective [2] and offers ESRD patients relatively good quality of life [3]. Singapore renal registry recorded a total of 625 (12.8 %) prevalent ESRD patients on PD (as of December 31, 2011) with mean age of 59.5 years and 56.1 % aged 60 years and above [4]. Comorbid conditions are common in this group such as diabetes mellitus (54.5 %), ischemic heart disease (45.7 %), cerebrovascular disease (19.7 %) and peripheral vascular disease (15.1 %) [4].

Caring for PD patients is taxing for caregivers as they have to take on the additional responsibility of performing PD exchanges for the patients besides the usual care of a chronically ill person with special needs. This is especially true for elderly patients who are more likely to have decreased physical or mental functioning (e.g., impaired vision, dementia, depression) and require care which is provided mostly by family members. A previous study in Singapore reported that 50 % of elderly PD patients were dependent on others for treatment-related tasks [5]. Caregivers of elderly PD patients demonstrated diminished quality of life compared with those of HD patients [6]. Caregiver burnout may contribute to dialysis modality failure [7].

Furthermore, elderly PD patients have a higher comorbidity burden. Many have limited mobility and some require wheelchairs. Housebound PD patients may become socially isolated and more prone to mental health problems. A previous study has shown that 55.4 % elderly PD patients suffered from depression and 36.5 % from anxiety [5]. PD patients also have a poorer quality of life, mentally, physically and emotionally, compared with age-matched controls in the general population [5]. The sedentary lifestyle may also render them increasingly debilitated, hence resulting in a vicious cycle.

Focus of care for dialysis patients has always been on the medical aspect of dialysis and renal disease. In order to offer better support to PD patients and their caregivers, Khoo Teck Puat Hospital (KTPH) initiated the current program (from February 1, 2012, to January 31, 2014) and was supported by Tote Board Community Healthcare Fund and Alexandra Health Endowment Fund to provide community rehabilitation for PD patients at St Luke’s Eldercare (SLEC) centers. This is the first program set up in Singapore with the purpose of day care and rehabilitation specifically for PD patients. It was hoped that this program can provide respite for caregivers of PD patients, promote psychosocial and physical rehabilitation for the patients and ultimately decrease hospitalization and admissions due to caregiver issues. To date, there has not yet been any study systematically investigating the effects of attending a day care program on PD patients and their caregivers.

Methods

Program description

This study received ethics approval by the National Healthcare Group Research and Development Office, Singapore. All participants of the program were cared for at three day care centers belonging to SLEC. SLEC is an established Christian voluntary welfare organization who specializes in caring for the elderly. The objective of the program was to: (1) provide respite care for caregivers, (2) foster social interaction with fellow PD patients and senior citizens, (3) maintain mobility through a structured community program and (4) offer individual and group supportive, motivational counseling/education.

The program offered performance of continuous ambulatory peritoneal dialysis (CAPD) exchanges in addition to the standard day care services which was provided Monday to Friday 7.30 a.m.–6.30 p.m. (Table 1).

Table 1 Program services
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Criteria for enrollment in the program were PD patients aged ≥ 50 years old with no infectious diseases who (1) were housebound, (2) might benefit from social interaction or had caregivers requiring relief or (3) were new CAPD patients with working caregiver who would otherwise have to rely on automated PD (APD).

Care staff training

Two to three staff members from each SLEC centers were selected for training if they had adequate manual dexterity and vision and were motivated to care for PD patients. There was a standardized process for training and certification before caring for PD patients. The training process (Table 2) was similar to a previous study [8]. Consensus was reached between center managers and the program coordinator in the following areas: proper assignment of employees to different shifts or crew to ensure full coverage of all PD exchanges; strategies to help staff concentrate on performing PD/avoid distractions; and retraining for care staff that do not perform CAPD for more than one month.

Table 2 Day care staff training schedule
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Patient recruitment

All healthcare providers (HCPs) involved in PD care were encouraged to refer patients to the program coordinator. Briefing sessions were organized with doctors, nurses, medical social workers (MSWs) and renal coordinators from all the restructured hospitals in Singapore where the majority of PD patients (84.3 %) received treatment [4].

Good rapport was established between the HCPs and program team by addressing their concerns. Implemented strategies involved streamlining referral process, establishing a systematic and structured staff training program and preparing written policies and rules particularly addressing PD-related procedures and infection risk.

Additionally, program details were presented at major PD meetings in Singapore. Further assistance for recruitment was solicited from the National Kidney Foundation Singapore (NKFS) and Baxter Healthcare (Asia) Pte Ltd nurses who were doing home visits of PD patients. These nurses were particularly familiar with individual patient and caregiver needs.

Assessment tools and data analysis

Outcomes of the program included four components:

  1. 1.

    Program referral and enrollment Source and reason for referral and reason for non-uptake/rejection were noted.

  2. 2.

    Patient and caregiver assessment General information collected included participants’ demographics, length of stay within the program and peritonitis rate. Patient and caregiver psychological status were evaluated on a monthly basis. Instruments used to assess patients included the 12-item Short-Form Health Survey (SF-12) [9] and the depression subscale of Hospital Anxiety and Depression Scale (HADS-D) [10]. SF-12 higher scores signify better outcomes (range 0–100). For HADS-D, higher scores indicate higher level of depression (range 0–21). These two scales were also used for measuring caregiver outcomes. An additional assessment tool for caregivers was the Zarit Burden Interview Short-Form 12 (ZBI-12) [11], with higher scores suggesting higher level of burden (range 0–48). In addition, patients’ level of participation, motivation and caregiver distress were collected from SLEC care record (as assessed descriptively by the same member of staff for a specific SLEC center and confirmed by informal interview of staff, patient and caregiver by the project coordinator).

  3. 3.

    Short semi-structured interviews with patients, family members and HCPs about the effects of the program on patient’s functioning status and mood.

  4. 4.

    Staff training A questionnaire modified from a patient self-assessment form [12] was used to evaluate care staff’s knowledge and confidence in caring for PD patients before and after the structured training program. Knowledge and confidence levels were scored from 1 to 5, with higher scores indicating better outcomes.

Continuous variables were expressed as mean (range), and categorical variables were described as percentages. Mental health outcomes were plotted against time in the program for patients and caregivers. All analyses were performed with SPSS software, version 17.0.

Results

Referral and enrollment

A total of 64 patients were referred to the program, and 16 were eventually enrolled. The majority of patients were referred by hospital nurses (n = 28, 44 %), followed by community nurses (n = 16, 25 %), MSWs (n = 13, 20 %) and doctors (n = 7, 11 %).

Table 3 shows the reasons cited by HCPs for referring patients. The main reason was need for assistance with daytime CAPD exchanges (n = 29, 66 %) for lack of a caregiver or a previously self-caring patient experiencing decline in functional status post-hospitalization. For APD patients, lack of a caregiver during the day was the predominant reason (n = 9, 50 %).

Table 3 Primary reasons cited by healthcare providers for referring patients (N = 64)
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A total of 48 patients referred by HCPs opted not to take up the day care service or were rejected by SLEC. Key factors include lack of patient motivation (n = 25, 52 %), patient unsuitability (n = 17, 35 %), lack of family support (n = 5, 10 %) and traveling distance (n = 1, 2 %). Examples of patient unsuitability were patients requiring excessive nursing care or those with active infection.

Participants

Table 4 shows the basic information of the 16 program participants. Mean age was 67.2 (range 54–85) years.

Table 4 Basic information of program participants (N = 16)
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A total of nine patients stayed in the program for more than 1 month. For this group, as shown in Table 5, the length of stay was 205.0 days (58–428). There was 1.0 (0–4) hospitalization with median hospitalization stay of 1.0 (0–22) days. Frequency of attendance was 2.9 (0.6–4.8) times/week of hospitalization-free days. There were no peritonitis episodes while patients were in the program. For patients who stayed >1 month (data not shown), 67 % had caregivers with at least a moderate level of stress, versus 14 % for patients staying <1 month. In addition, 78 % of the former group participated in most of the center activities, versus 29 % of the latter group. Among the longer stayers, 78 % were self-motivated to stay, with none in the other group. These assessments were made by the program coordinator, at 1 month or shortly after dropout from the program.

Table 5 Participant attendance and hospitalization
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By the end of the program, only three patients remained enrolled in the program. Reasons for dropout included decline in health (n = 6, 46 %), inability to adapt (n = 3, 23 %), traveling distance too far (n = 2, 15 %) and death (n = 2, 15 %).

Patients and caregiver assessments

Among the nine patients who stayed in the program for more than 1 month, four of them were not able to answer program questionnaires due to cognitive dysfunction (n = 3) and language barrier (n = 1). Two out of the five were independent in caring for themselves (ADL independent), so their caregivers were not included. Thus, the final assessments were based on five patients and three caregivers. The results are shown in Figs. 1, 2, 3 and 4. Only Caregivers 1 and 2 and Patient 4 showed improvement in PCS. MCS was improved in all except for Patient 3 and Caregiver 3. Depression/anxiety was also sustainably reduced in all except for Patients 1 and 5 and Caregiver 3, though for Patient 1, there was a large reduction before returning to pre-program levels at 6 months. Caregiver burden was sustainably reduced in two. For Caregiver 1, there was a large initial reduction, but this then returned to baseline reflecting his/her own and his/her family member’s HADS score.

Fig. 1
figure 1

PCS score over time. P, patients; C, caregivers. P1 and C1 are a patient and caregiver pair, as are P2 and C2, P3 and C3

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Fig. 2
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MCS score over time

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Fig. 3
figure 3

HADS score over time

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Fig. 4
figure 4

ZBI-12 score over time for caregivers

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Patient and caregiver interviews

Verbal feedback was solicited from patients, family members, HCPs and SLEC staff regarding patient satisfaction with the program and the effects of the program on patient’s functional status and mood. Responses were recorded as expressed. No quantitative analyses were performed. Common responses are given in Table 6. Overall, there was a high level of satisfaction with the quality of care provided. The staff was viewed as caring and trustworthy. Improvement in participants’ mood was observed by family members and HCPs. Caregivers said they had more time to engage in personal activities. Dissatisfaction was also expressed. Caregivers were concerned about the traveling distance. Patients did not like interruption of activities for dialysis exchanges. Frail patients found it difficult to participate in center activities.

Table 6 Qualitative survey sample responses
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Staff training

Assessments were done at baseline and 1 month for care staff (n = 8) versus other staff in the center not directly involved in PD exchanges (n = 6). Baseline scores were similar in both groups for both knowledge and confidence. Dedicated care staff at the centers demonstrated better knowledge (1.72 ± 0.53 vs. 3.13 ± 0.68) and confidence (1.56 ± 0.96 vs. 2.78 ± 0.38) in caring for PD patients after training, whereas control staff did not show improvement (knowledge 1.81 ± 0.56 vs. 1.86 ± 0.42; confidence 1.62 ± 0.85 vs. 1.70 ± 0.93).

Discussion and conclusion

This program represents the first attempt in Singapore to support PD patients and their caregivers through a day care program. Though the service was underutilized, both patients and their caregivers showed mental benefit, particularly for patients who are in relatively good physical health and maintained in the program more than 1 month. It meets the patients’ needs for social interaction and helps maintain functional status. Caregivers were also provided stress relief.

Extended care facilities (ECF) are expected to play an important role in patient management as the number of frail elderly ESRD patients increases [8]. Most elderly are unable or require help to perform PD exchanges [13]. It has been estimated that 60–93 % elderly patients require assistance for PD [14]. In our program, 66 % of the CAPD patients were referred to seek assistance with performing exchanges. One concern about ECF is that it may be associated with an increased risk of peritonitis, as has been found previously [15]. The current program achieved successful patient outcomes, with none of the participants experiencing peritonitis while they were enrolled. A large number of referred patients were rejected for requiring care beyond that provided by a day care center. Hence, ECFs of various capabilities may be required to support all PD patients. Training and competencies for PD exchanges can be easily implemented as seen in our program.

Apart from providing assistance with exchanges, attending day care centers have additional benefits. Being housebound for treatment-related tasks increases the risk of decline in physical health and contributes to psychosocial problems such as depression, anxiety and social isolation, especially among elderly patients [5]. Day care program likes ours will help maintain functional status and provide social interaction stopping the vicious cycle of physical and mental deterioration that may occur with home-based therapies [16].

We have identified six prerequisites for training staff to do PD exchanges, namely standard operating procedures, a training manual, a problem-solving guide, infection control instructions, staff competency and certification, and an emergency contact person. This enabled care staff to build up knowledge and confidence caring for PD patients and allay anxiety.

HCPs warmly welcomed the establishment of day care services for PD patients, as the need has long been recognized. Nurses were best at identifying patients’ needs and persuading the patients to consider using the service. Doctors were the least likely to refer. Though patients felt to benefit were identified and the referral process was made easier, we failed to improve the rate of referral.

Most referred patients were not motivated to attend. This is reflective of the statistics of long-term care (LTC) services uptake in Singapore where half or more of the eligible referrals for LTC services did not result in eventual use of the referred services [17]. Anderson Behavioral Model of Health Services outlined the determinants of health service use of which we could work on to increase the motivation of patients to attend the PD day care program [18]. This includes targeting the health beliefs of patients, i.e., knowledge, values and attitude toward PD day care program (predisposing factors), reducing the financial and organizational barriers to the service uptake (enabling factors) and exploring the need for such day care service (need factors). A better education on the rehabilitative value of day care program, having activities of interest at the center, financial assistance and short traveling distance as a result are likely to improve uptake. In addition, it is essential to target the family members as it was found that caregivers’ attitudes, capacity to care, and social norms surrounding family caregiving heavily influenced the utility of LTC services in Singapore [17].

We identified that patients who were in relative good physical health and able to engage socially were more likely to be interested in the day care option. Significantly debilitated and already socially withdrawn patients were unlikely to take up and remain in day care. We hence attempted to recruit patients when they first initiated PD. This, however, also failed to improve uptake. We speculate that such patients were struggling to learn the new treatment and did not want additional disruption to their routine. More studies are required to decide the best time to integrate day care into a PD patient’s treatment plan.

Few caregivers (six of 64 referrals) took up the service for stress relief. This may be partly explained by the tendency of caregivers to devalue their own needs. A recent study of pre-dialysis and dialysis patients with family caregivers showed that caregivers placed more importance on the convenience of patient receiving dialysis at home than their desire for respite [19]. Our study has found that it mainly benefits caregivers when patients are still in relatively good health. When patients’ health deteriorates, the effort required to send the patients to a day care center outweighs the benefit for caregiver and patient alike. For extremely frail patients, other forms of respite care, such as home visits by community nurses, are probably needed.

The major difficulties we encountered were the lack of value placed on holistic care and maintaining quality of life, resulting in low recruitment. For ESRD patients, focus has always been on the medical aspect of dialysis and renal disease. More education is necessary to convince patients and their caregivers about the benefits of rehabilitation, socialization and respite.

There are many limitations to this study. This was intended as a quality improvement project although some quantitative analyses could be performed if there had been more patients in the study. We had, however, poor uptake and hence small numbers. We were also unable to perform assessments about patients and caregivers systematically due to the high turnover of clientele. Hence, we could not evaluate longer-term outcomes such as decreased hospitalization days.

In conclusion, day care centers can be readily trained to take care of reasonably functional PD patients, benefiting both patients and their caregivers. Other forms of support, however, are needed for the frailer ones. Poor uptake generally of long-term care facilities in Singapore is, however, a barrier that also needs to be overcome.