Effectiveness of a Specialized Outpatient Palliative Care Service as Experienced by Patients and Caregivers

Abstract

Objectives:

In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care system. The objective of this study was to evaluate the effectiveness of one of the first SOPC teams based at the Munich University Hospital.

Methods:

All patients treated by the SOPC team and their primary caregivers were eligible for this prospective nonrandomized study. The main topics of the surveys before and after involvement of the SOPC team were: for patients, the assessment of symptom burden (Minimal Documentation System for Palliative Medicine, MIDOS), satisfaction with quality of palliative care (Palliative Outcome Scale, POS), and quality of life (McGill Quality of Life Questionnaire, MQOL); for caregivers, burden of care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and quality of life (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F).

Results:

Of 100 patients treated between April and November 2011, 60 were included in the study (median age 67.5 years, 55% male, 87% oncological diseases). In 23 of 60 patients, only caregivers could be interviewed. The median interval between the first and second interview was 2.5 weeks. Quality of life increased significantly in patients (p<0.05) and caregivers (p<0.001), as did the patients' perception of quality of palliative care (POS, p<0.001), while the caregivers' psychological distress and burden of care significantly decreased (HADS, p<0.001; HPS, p<0.001).

Conclusions:

The involvement of an SOPC team leads to a significant improvement in the quality of life of patients and caregivers and can lower the burden of home care for the caregivers of severely ill patients.

Introduction

According to the World Health Organization (WHO), palliative care (PC) is an interdisciplinary approach with the primary goal of improving the quality of life (QoL) in patients with life-threatening illnesses and their families.^1,2 Former research indicated the importance of considering the individual needs of PC patients and their caregivers to improve their QoL.^3–6 It has been suggested that these needs can be better fulfilled by outpatient PC, enabling the patients to spend their residual time in their familiar environment.^7–9

Since 2007, patients with severe, advanced life-limiting diseases are eligible for a Specialized Outpatient Palliative Care (SOPC) service in Germany.¹⁰ To this end, multiprofessional PC teams (SOPC teams) have increasingly been established in several regions of the country.^11–13 The goal of this prospective study was to evaluate the acceptance and effectiveness of an SOPC team as perceived by patients and caregivers.

Methods

Study design

The prospective, nonrandomized study was conducted at the Interdisciplinary Centre for Palliative Medicine at the University of Munich, Germany. In 2009 a multiprofessional SOPC team was established consisting of two physicians, two nurses, and a social worker, all of them specialized in PC, providing palliative home care for people with life-limiting diseases in Munich. The main tasks of the SOPC team are the provision of palliative treatment with the focus on symptom control, including a 24/7 medical and nursing on-call service, as well as coordination of professional assistance in cooperation with the local Health Care Professionals (HCPs) and psychosocial support. The main goal is to improve the quality of care and to thus enable patients and their families to live through the palliative and dying phase at home.

Participants

Between April and November 2011, all patients treated by the SOPC team in Munich and their primary caregivers were eligible for the study. Primary caregiver was defined as the person who provides the most care for the patient without being paid.¹⁴ Exclusion criteria were patient and caregiver refusal, inappropriate language knowledge or intellectual disability to understand the questionnaire. The study was approved by the Research Ethics Committee of the Munich University Hospital, and only participants who provided informed consent were included.

Questionnaires

Patients

To assess the effectiveness and acceptance of SOPC, two patient questionnaires (PQ1 and PQ2) were developed based on clinical practice and validated scores. The first assessment (PQ1) took place during the first week after involvement of the SOPC team. The second assessment (PQ2) was scheduled within the following eight weeks and took place after consultation with the palliative medicine specialists according to the patient's condition. In addition, palliative medicine specialists provided objective data concerning the patients' functional status (Eastern Cooperative Oncology Group, ECOG)¹⁵ as well as their current medication at both assessment time points.

Both questionnaires consisted of 58 items. For 18 items, numeric rating scales (NRS, 0–10) were used to assess patients' satisfaction with various aspects of the care (14 items) and their adjustment before and after involvement of the SOPC team (4 items). Patients' QoL was investigated using the McGill Quality of Life Questionnaire (MQOL, 17 items)^16–19 and their symptoms using the Minimal Documentation System for Palliative Medicine (MIDOS, 11 items).^20–22 Furthermore, the Palliative Outcome Scale (POS, 12 items) was used to assess the quality of palliative care administered.^23,24

Caregivers

The Caregiver Questionnaires (CQ1 and CQ2) were also developed specifically for this study and had a format similar to that of PQ1 and PQ2. CQ1 comprised a total of 71 items, 10 of which surveyed caregivers' sociodemographic data. 18 items (NRS, 0–10) covered caregivers' satisfaction with various aspects of the care (14 items) as well as their adjustment before and after involvement of the SOPC team (4 items). Furthermore, validated questionnaires were used to investigate caregivers' QoL (Quality of Life in Life-Threatening Illness – Family Carer Version, QOLLTI-F, 19 items)¹⁴ and their anxiety and depression (Hospital Anxiety and Depression Scale, HADS, 14 items).^25–27 The burden of care was measured by a short version of the Häusliche Pflegeskala (home care scale, HPS, 10 items).^28–30 CQ2 consisted of the same items without sociodemographic data (61 items).

Both PQs and CQs were completed in dialogue form by a trained psychologist who was not part of the care team. The original questionnaires are available from the authors upon request.

Statistical analysis

Descriptive statistics were used to characterize the demographic data, objective care data, and evaluation of care. Differences before and after involvement of the SOPC team were calculated using the Wilcoxon signed-rank test for nonparametric data, as some of the variables were not normally distributed. For all analyses, Bonferroni adjustments were conducted. Significance level was set at p<0.05 for single comparisons and on the respective adjusted level for multiple comparisons. Analyses were conducted using SPSS 20.0 (SPSS Inc., Chicago, IL).

Results

Study participants

Patients

Between April and November 2011, of a total of 100 patients treated by the SOPC team, 60 (60%) were included in the study. Forty patients were excluded, 30 (75%) of them because of exclusion criteria. Eight patients (20%) could not be surveyed, as their death occurred within less than 24 hours after involvement of the SOPC team, and two foreign patients (5%) immediately left Germany with the aid of the SOPC team to die in their home country. There were no significant differences in characteristics and symptom burden between the 60 included and the 40 excluded patients.

Due to poor clinical condition or patient refusal, 23 patients of the sample (38%) didn't take part in the survey themselves. In these cases, only sociodemographic data of the patients were collected and the caregivers answered the questionnaires CQ1 and CQ2. As 5 of the remaining 37 patients died between first and second assessment, a total of 32 patients were assessed by self-report in the study at the second measure point.

Of the included 60 patients, 33 (55%) were male and median age was 67.5 years (range 32–97). The majority of the patients were Christians (47 patients, 78%), and 11 of them were not religious (18%). Twelve patients had a migration background (20%). Oncologic diseases were the predominant underlying disorders (52 patients, 87%), 21 of them with a cancer of the gastroenterologic tract (35%). The interval between the first and the second assessment ranged from a few days to seven weeks (median=2.5 weeks, interquartile range=2). None of the patients had an additional support service added to his or her care during SOPC involvement that was not a direct result of the SOPC team's work.

Caregivers

Since five (8%) of the included patients were single and caregivers were prevented for temporal reasons in two cases (3%), a total of 53 caregivers participated in the study, 41 (77%) of which were female. The age ranged from 29 to 91 years, with a median of 58.0. In most cases caregivers were spouse/partner (64%), parents (20%), or children (6%); two patients were cared for by a neighbor, and one each by a sister, a remote relative, and a good friend. Forty-four caregivers (83%) were married or lived in a relationship, five (9%) were single, and two were widowed or divorced.

Since the questionnaires were completed in dialogue form with a lot of patience by a trained psychologist and the assessment took place on-site in the familiar environment of the patients and caregivers, no missing data arose.

Assessment of care

After involvement of the SOPC team, patients' and caregivers' satisfaction with care and the quality of care significantly improved, as documented for 10 of 14 issues in the survey of patients and 11 of 14 issues in the survey of caregivers (see Table 1).

Table 1.

Patients' and Caregivers' Satisfaction with Various Aspects of Care Before and After Involvement of SOPC

	Patient				Caregivers
	Involvement of SOPC team				Involvement of SOPC team
	Before Median (IQR)	After Median (IQR)	n	p	Before Median (IQR)	After Median (IQR)	n	p
Burden relief for caregivers	1 (3)	9 (3)	30	p<.001^a	2 (2)	9 (3)	53	p<.001^a
Psychological support	7 (3)	8 (3)	32	p<.001^a	5 (3)	8 (2)	53	p<.001^a
Support for activities of daily living	6.5 (2)	8 (1)	32	p<.001^a	4 (3)	6 (4)	53	p<.001^a
Communication with the caregiver/patient	9 (2)	10 (2)	30	p<.05^b	8 (5)	8 (4)	53	p<.001^a
Communication with the general practitioner	7 (4)	7 (4)	32	n. s.	7 (5)	7 (5)	53	n. s.
Communication with local HCPs	7 (2)	8 (3)	13	n. s.	8 (3)	8 (2)	20	n. s.
Quality of medical information	6 (4)	10 (0)	32	p<.001^a	6 (3)	10 (0)	53	p<.001^a
Quality of medical care	5 (4)	10 (0)	32	p<.001^a	4 (4)	10 (0)	53	p<.001^a
Quality of nursing information	5 (5)	10 (0)	12	p<.05^b	6.5 (4)	10 (0)	18	p<.001^a
Quality of nursing care	7 (2)	10 (0)	12	n. s.	7.5 (3)	10 (0)	53	p<.05^b
Support in provision of care for the patient	3 (3)	10 (0)	32	p<.001^a	3 (3)	10 (0)	53	p<.001^a
Clarification of important questions on the diagnosis and prognosis	5 (3)	10 (0)	32	p<.001^a	4 (3)	10 (0)	53	p<.001^a
Support in socio-legal issues (e.g., entitlement to benefits)	1 (2)	10 (2)	32	p<.001^a	0 (2)	10 (1)	53	p<.001^a
Spiritual care	5 (2)	7 (4)	9	n. s.	6.5 (3)	7 (3)	16	n. s.

Wilcoxon signed-rank test [two-tailed]; Bonferroni-corrected p<.000056.

Wilcoxon signed-rank test [two-tailed]; Bonferroni-corrected p<.002778.

IQR, interquartile range; NRSs, numeric rating scales (0–10); SOPC, Specialized Outpatient Palliative Care.

The burden relief for caregivers as perceived by patients and caregivers increased through the involvement of the SOPC team (see Figures 1A and 1B), as did the perception of psychological support and support for activities of daily living. Both patients and caregivers felt much better informed about the disease situation, and they felt better taken care of by the SOPC team.

FIG. 1.

Burden relief for caregivers according to patients' (A) and caregivers' (B) ratings as assessed by NRS. SOPC, Specialized Outpatient Palliative Care, NRS, Numeric Rating Scales.

No significant changes could be found in the patients' and caregivers' communication with the patients' general practitioners (GPs) or other local HCPs (e.g., nursing staff, social workers). In addition, both patients and caregivers reported no significant changes concerning spiritual care.

Patients' and caregivers' adjustment

The subjective burden of both patients and caregivers due to patients' disease decreased (see Table 2), and the assessment of self-reported current QoL of patients as well as caregivers' QoL correspondingly increased, indicating a slightly stronger improvement of caregivers' QoL (see Figures 2A and 2B) compared to patients' QoL (see Figures 2C and 2D). Concurrently, caregivers rated the patients' QoL lower than the patients themselves did, while patients assessed the caregivers' QoL higher than the caregivers themselves did. These findings were confirmed by the results of the validated assessment of patients' and caregivers' QoL (MQOL versus QOLLTI-F, Table 2).

FIG. 2.

Caregivers' QoL according to patients' (A) and caregivers' (B) ratings. Patients' QoL according to patients' (C) and caregivers' (D) ratings. Assessed by NRS. SOPC, Specialized Outpatient Palliative Care; QoL, Quality of life; NRS, Numeric Rating Scales.

Table 2.

Patients' and Caregivers' Adjustment Before and After Involvement of SOPC

		Patients				Caregivers
		Involvement of SOPC				Involvement of SOPC
	Assessment instrument	Before Median (IQR)	After Median (IQR)	n	p	Before Median (IQR)	After Median (IQR)	n	p
Subjective burden due to patients' disease	NRS	10 (2)	8 (3)	32	p<.001^a	10 (2)	8 (2)	53	p<.001^a
Patients' QoL
	NRS	2 (4)	3 (4)	32	p<.050^b	1 (3)	2 (2)	53	p<.050^b
	MQOL total score	4.4 (1.1)	6.0 (1.6)	32	p<.001^c	-	-	-	-
Patients' self-reported general condition	POS total score	25 (4)	14.5 (7)	32	p<.001^c	-	-	-	-
Caregivers' QoL
	NRS	4.5 (4)	5.5 (2)	30	p<.001^a	3 (3)	5 (3)	53	p<.001^a
	QOLLTI-F total score	-	-	-	-	6.1 (1.2)	7.3 (.9)	53	p<.001^c
Symptom control
	NRS	5 (3)	9.5 (2)	32	p<.001^a	4 (3)	10 (2)	53	p<.001^a
Pain	MIDOS	3 (1)	0 (1)	32	p<.001^d	-	-	-	-
Nausea	MIDOS	1 (3)	0 (1)	32	p<.001^d	-	-	-	-
Vomiting	MIDOS	0 (3)	0 (1)	32	p<.050^e	-	-	-	-
Lack of appetite	MIDOS	3 (2)	1 (3)	32	p<.050^e	-	-	-	-
Depressive mood	MIDOS	1 (2)	0 (1)	32	p<.050^e	-	-	-	-
Well-being	MIDOS	0 (1)	2 (2)	32	p<.001^d	-	-	-	-
Adynamia	MIDOS	3 (1)	3 (1)	32	n. s.	-	-	-	-
Anxiety	MIDOS	1 (2)	.5 (2)	32	n. s.	-	-	-	-
Dyspnea	MIDOS	1 (3)	1 (1)	32	n. s.	-	-	-	-
Obstruction	MIDOS	1 (3)	.5 (1)	32	n. s.	-	-	-	-
Fatigue	MIDOS	3 (1)	2 (2)	32	n. s.	-	-	-	-
Caregivers' stress and burden
	HADS total score	-	-	-	-	22 (12)	16 (10)	53	p<.001^c
	HPS total score	-	-	-	-	13 (10)	9 (8)	53	p<.001^c

Wilcoxon signed-rank test [two-tailed]; Bonferroni-corrected p<.000056.

Wilcoxon signed-rank test [two-tailed]; Bonferroni-corrected p<.002778.

Wilcoxon signed-rank test [two-tailed].

Wilcoxon signed-rank test [two-tailed]; Bonferroni-corrected p<.000091.

Wilcoxon signed-rank test [two-tailed]; Bonferroni-corrected p<.004545.

HADS, Hospital Anxiety and Depression Scale; HPS, Häusliche Pflegeskala (home care scale); IQR, interquartile range; MQOL, McGill Quality of Life Questionnaire; MIDOS, minimal documentation system for palliative medicine; NRS, numeric rating scale (0–10); n.s., not significant; POS, Palliative Outcome Scale; QOLLTI-F, Quality of Life in Life-Threatening Illness – Family Carer Version; QoL, Quality of Life; SOPC, Specialized Outpatient Palliative Care.

As part of the MQOL, patients were asked for the positive and negative factors having an influence on their QoL. For most of the patients (35/37), positive factors before involvement of the SOPC team were the ability to spend as much time as possible with their family and being able to have periods of respite at home. After involvement of the SOPC team, themes such as trustworthiness, courtesy, and humanity of the team members emerged (n=29/32). Furthermore, some patients' explicitly named the absence of pain and other symptoms as a fundamental positive change in their QoL (n=4/32). The patients' perception of somatic problems and the progressive deterioration of their condition as negative factors decreased after involvement of the SOPC team (n=36/37 versus n=25/32). Some patients mentioned as negative factors anxiety, worry about their loved ones, and the dependency on other people (before: n=10/37; afterwards: n=8/32).

The patients' self-reported general condition as assessed by the POS significantly improved through the involvement of the SOPC team (see Figure 3). When asked about their main problems before involvement of the SOPC team, patients primarily focused on medical concerns (e.g., pain and other symptoms, discharge from hospital, and insufficient outpatient care; n=34/37) and practical issues (e.g., lack of agility, excessive demands of caregivers, supplementary burden through bureaucracy, and financial worries; n=22/37). Also mentioned were several psychosocial problems such as anxiety, decreasing autonomy, difficulties in open communication and dealing with the poor prognosis, fear of being lonely, desire to spend as much time as possible and to die at home, lack of experience concerning the palliative situation, and insecurity and helplessness in acute situations (n=25/37). After involvement of the SOPC team, the majority of the sample explicitly named as the most helpful elements of SOPC involvement psychological and social issues such as burden relief for oneself and caregivers, a feeling of safety through the 24/7 medical on-call service, and the education and advice of a competent team of palliative specialists (n=31/32). Specific problems could not be solved sufficiently according to patients' rating in a few cases (n=4/32).

FIG. 3.

Patients' general condition as assessed by POS. SOPC, Specialized Outpatient Palliative Care; POS, Palliative Outcome Scale.

Symptom control as a whole could be significantly enhanced from both the patients' and caregivers' perspective (see Table 2). Information delivered by the patients' palliative medicine specialists indicated a significant deterioration of the patients' functional status between first and second assessment (ECOG, mean/median before SOPC=2.9/3 versus after SOPC=3.6/4; p<0.001). Medication didn't change significantly after involvement of the SOPC team with the exception of strong opioids,^31,32 which showed a significant increase (new prescription: n=14, discontinuation: n=2; p<0.05).

Though the overall psychological distress and burden of caregivers could be significantly decreased by the involvement of the SOPC team (see Figure 4A and Table 2), the degree of burden due to the care for a seriously ill person remained high. Before involvement of the SOPC team, 30 caregivers (57%) showed clinically relevant anxiety (HADS anxiety score≥11), which decreased to 15 (28%) afterwards (p<0.001). Concurrently, the number of caregivers with clinically relevant depression (HADS depression score≥11) decreased from 22 (42%) to 11 (21%; p<0.001). While 10 caregivers (19%) had a high rate in HPS (>20) before involvement of the SOPC team, the HPS score remained high afterwards only in one case (p<0.001).

FIG. 4.

Caregivers' psychological distress as assessed by HADS (A) and their burden of care as assessed by HPS (B). SOPC, Specialized Outpatient Palliative Care; HADS, Hospital Anxiety and Depression Scale; HPS, Häusliche Pflegeskala (home care scale).

Discussion

Our results suggest that the coordination and provision of outpatient palliative care by an SOPC team can make a pivotal contribution to the quality of care during the patients' palliative and dying phase. The high demand for SOPC, particularly for the 24/7 on call service, as identified by several studies, is clearly supported by our findings.^33–36 SOPC can bring up a feeling of safety in patients and caregivers and thus may contribute to the avoidance of several unnecessary hospitalizations.³⁷ Analyzing the nationwide distribution of SOPC in Germany, Wiese and colleagues³⁸ emphasized the importance of needs-oriented, exhaustive coverage as in emergency medical services. But since SOPC services have only recently been implemented in the German health care system, little data are available about the acceptance and effectiveness of these services to date.

The comparison of the patients' and caregivers' mutual assessment of their QoL showed that caregivers tended to underestimate patients' QoL, while patients' tended to overestimate caregivers' QoL. Kaub-Wittemer and colleagues³⁹ reported a good overall QoL in ventilated patients with amyotrophic lateral sclerosis, but a very high burden of care for the caregivers, some of whom rated their own QoL lower than their patient's QoL. In addition, some studies suggest that the caregivers' QoL may be improved by evidence-based caregiver support.^40,41 Our results show that SOPC can be very valuable in enhancing the caregivers' QoL.

In a retrospective survey of the influences on QoL in patients at home or in hospital, Jansky and coworkers⁴² suggested that patient-specific factors may be more important than the symptom burden. Our study confirms this assumption. Despite the continuous deterioration of the patients' condition, their QoL significantly improved after involvement of the SOPC team. Besides an optimized pharmacologic treatment, this seemed to be mainly due to better communication with the patient.

According to both patients' and caregivers' ratings, communication with GPs or other local HCPs was not improved after SOPC. Slort and colleagues⁴³ identified several barriers and facilitators in GP-patient communication. Gotze and colleagues⁴⁴ have highlighted the importance of efficient SOPC implementation in ensuring interdisciplinary and cooperative home care. In particular, deficiencies in communication and in continuity of care can be ameliorated by the involvement of an SOPC team.⁴⁵ In our study, the first SOPC team contact often took place in connection with the patient's discharge from hospital. Since several of the patients had had no contact with outpatient HCPs previously, the comparison of communication with HCPs between the first and the second assessment was impossible. In addition, the lack of detection of a change in communication could be due to the very short period of SOPC, since several patients had no further contact with their GPs during that time.

Several studies report difficulties in assessment and management of anxiety and depression in PC patients.^46–49 Though the majority of patients felt relieved by talking about their anxiety with the SOPC team, their psychological distress remained evident. These findings support the need for further progress in screening and treatment methods for psychological distress in PC patients.

No significant changes could be found regarding spiritual care. This might partly be caused by the lack of a chaplain or pastoral worker in the SOPC team. However, most of the patients explicitly did not wish any spiritual support at all. This may be due to the still widespread difficulty in distinguishing between religiosity and spirituality. Despite the consensus on seeing spirituality as an integral part of health care, particularly palliative care, its integration into daily practice seems to remain a challenge for both patients and health care staff.^50–54

Caring for a severely ill patient is a very stressful life event for family caregivers. Only scant data are available on interventions administered to support this specific population to date.⁵⁵ According to Vyhnalek and colleagues,⁵⁶ the support of the relatives represents a main focus for the SOPC team and requires an even higher amount of working time than the care for the patients themselves. In our study, the rates of clinically relevant levels of caregiver anxiety and/or depression could be significantly reduced by involvement of the SOPC team.

This study has several limitations. The interviews at first and second assessment were conducted by the same interviewer. The advantage of this method is that the scores were not biased by different interviewers. Although not a member of the SOPC team, the interviewer was not blind to the responses and might therefore unconsciously have influenced their direction. In addition, participants' responses may underlie social desirability. Since this study was conducted at a single center, only a small absolute number of patients could be enrolled, and therefore generalizability is limited.

Conclusions

Coordination and provision of palliative home care by an SOPC team appears to provide a pivotal contribution to the quality of care in a patient's palliative and dying phase. The team significantly improved the perceived QoL of patients and caregivers and lowered the caregivers' burden of care as well as their levels of anxiety and depression. Further research is needed to prove our findings in a larger population with varied health care settings.

Footnotes

Acknowledgments

The authors are grateful to all patients and caregivers for their willingness to participate and to share their experiences. Special thanks go to all colleagues of the SOPC team in Munich for their efforts in identifying potential participants, and to the Alfried Krupp von Bohlenund Halbach-Stiffung for the financial support of the professorship for Pediatric Palliative Care in Munich. Thanks are also due to Rüdiger Laubender for his statistical counselling. This study was funded by the Initiative Versorgungsforschung der Bundesärztekammer (Service Provision Research Initiative of the German Medical Association).

Author Disclosure Statement

No competing financial interests exist.

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