JAMDA 15 (2014) 732e737
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Perspectives on Parkinson Disease Care in Dutch Nursing Homes Anouke van Rumund MD a, *, Nico Weerkamp MD b, Gerrit Tissingh MD, PhD b, Sytse U. Zuidema MD, PhD c, Raymond T. Koopmans MD, PhD d, Marten Munneke PhD a, e, Petra J.E. Poels MD, PhD a, Bastiaan R. Bloem MD, PhD a a
Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands Atrium Medical Center, Department of Neurology, Heerlen, The Netherlands c Department of General Practice, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands d Department of Primary and Community Care: Center for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Center, Nijmegen, The Netherlands e Scientiﬁc Institute for Quality of Healthcare (IQ Healthcare), Radboud University Medical Center, Nijmegen, The Netherlands b
a b s t r a c t Keywords: Parkinson disease nursing homes quality of care qualitative research
Introduction: Parkinson’s disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers. Methods: Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care. Results: Three core unmet needs were identiﬁed: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufﬁcient staff knowledge on PD-related issues, such as motor ﬂuctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses. Conclusions: PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identiﬁed, including greater attention for psychosocial problems, improved PD-speciﬁc knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders. Ó 2014 AMDA e The Society for Post-Acute and Long-Term Care Medicine.
Patients with late-stage Parkinson disease (PD) are often signiﬁcantly disabled for many years. Nonmotor symptoms cause most disability and respond poorly to medication. When PD advances, care and treatment become increasingly complex. Ultimately, permanent admission to a nursing home becomes inevitable for many patients.1,2 Indeed, 20% to 40% of patients with PD will be admitted to a nursing home3e8 where nursing home physician specialists take over treatment, and neurologists often lose track of their patients.3,7,9 The prevalence of PD in nursing homes ranges between 5% and 7%.4,9,10 Consequently, nursing home physicians care for relatively few patients per facility and this might make it difﬁcult for nursing home This study was funded by the Prinses Beatrix Fonds. The authors declare no conﬂicts of interest. * Address correspondence to Anouke van Rumund, MD, Radboud University Medical Center, Department of Neurology (HP 935), PO Box 9101, 6500 HB Nijmegen, The Netherlands. E-mail address: [email protected]
(A. van Rumund).
physicians to accumulate sufﬁcient expertise in treating patients in advanced stages of PD. In 2008, the Dutch Parkinson’s Association received reports from its patient members suggesting that the quality of care for residents with PD in nursing homes was unsatisfactory. In international studies, similar ﬁndings were reported, indicating that diagnostic accuracy and treatment of motor symptoms is suboptimal in nursing homes11 and PD-speciﬁc knowledge among nursing home staff is limited.12 Recently, we reported that the proportion of daily “off” time in nursing home residents is high, with many residents being possibly undertreated for their motor symptoms.13 Moreover, nonmotor symptoms were very common and were often not recognized, despite a great impact on the quality of life.14 None of these studies specifically addressed the main concerns that were perceived by residents, caregivers or nursing home professionals. We conducted an explorative qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspectives of
1525-8610/$ - see front matter Ó 2014 AMDA e The Society for Post-Acute and Long-Term Care Medicine. http://dx.doi.org/10.1016/j.jamda.2014.05.009
A. van Rumund et al. / JAMDA 15 (2014) 732e737
residents, informal caregivers, and health care workers. Our aim was to reveal the unmet needs of nursing home residents with PD. Methods Experiences and unmet needs were explored in 2 ways: (1) interviewing residents and informal caregivers and (2) focus group discussions with health care workers. Setting The present study was part of a descriptive study investigating the diagnostic accuracy, prevalence, clinical characteristics, and pharmacologic treatment of Dutch nursing home residents with PD and parkinsonsim. Twelve large nursing home organizations, situated in southeast Netherlands (accounting for approximately 100 nursing homes and 5480 beds) participated. Apart from geographic selection in southeast Netherlands, these facilities represent an unbiased sample of nursing home care. A total of 258 residents were initially identiﬁed with a double search strategy as described in previous publications. PD was diagnosed in 152 residents. The remaining 106 residents were diagnosed mainly with atypical parkinsonism. After exclusion of participants scoring less than 18 on the Mini-Mental State Examination (MMSE), 73 PD residents remained.13,14 Selection of Residents and Informal Caregivers In each of the 12 nursing home organizations, 1 or 2 eligible residents were randomly addressed by 1 of the investigators for participation in an interview if communicative skills and cognition were sufﬁcient. Residents who consented to participate were included in the study. In the same way, informal caregivers were randomly addressed. Residents and caregivers were not related so as to achieve maximum variety in the expressed problems and needs. Selection of Health Care Workers Managers of the participating nursing homes were requested to recruit health care workers for participation in a focus group. The inclusion criteria for selection of health care workers were willingness to participate and involvement in the care for PD residents in the previous 2 years. The aim was to obtain a varied sample of health care disciplines, work experience, and nursing home locations in each focus group. Ethics Approval was obtained from the local Medical Ethics Committee. All participants signed informed consent before participation.
(qualiﬁed) moderator who stimulated the participants to share their opinions on PD care. The main goal of the focus group discussions was to have an interactive discussion concerning barriers for good PD care where ideas for improvement were shared and compared; there was no aim for consensus. Nurses and health care professionals were interviewed in separate focus group meetings to encourage an open discussion. A 2-hour meeting was organized for each focus group. A number of topics were determined before the meetings: expertise, emotional support, nursing, medical treatment, multidisciplinary care, and clustering of PD residents, but priority was given to topics brought up by the participants. Participants were stimulated to suggest improvements.
Number of Interviews and Focus Groups The number of interviews and focus groups needed was not determined in advance, but was assessed during the process by the point of saturation according to the Grounded Theory of Glaser and Strauss.15 The point of saturation was reached when no signiﬁcant new aspects or items were identiﬁed in either the interviews or focus group meetings.
Data Analysis The interviews and focus group meetings were audio recorded and transcribed verbatim. Data analysis was done using Atlas.ti qualitative data analysis computer software (Scientiﬁc Software Development GmbH, Berlin, Germany). The raw data were analyzed by labeling all relevant quotes with codes (open coding). These coded data were regrouped in potential conceptual categories (axial coding) and subsequently classiﬁed into core themes according to the Grounded Theory.15 The process of data collection, transcription, and coding was cyclic: after every focus group meeting and every 3 interviews, a complete analysis was done. All transcripts were analyzed independently by 2 researchers per transcript (by 4 researchers in total: A.R., C.E., B.L., and L.R.) to increase coding reliability. Afterward, differences in coding were discussed until consensus was achieved.
Results Fifteen residents and 15 (unrelated) informal caregivers were included for an interview. Five focus group discussions were organized with 35 participants in total: 2 focus groups with nurses (13 participants) and 3 focus groups with nursing home professionals (22 participants). Characteristics of the participants are displayed in Table 1.
Quotes, Codes, and Core Themes
Speciﬁcally trained investigators performed semistructured interviews of residents and caregivers. Before the interviews, several topics were determined: residents and caregivers were asked for unmet needs concerning treatment, care, emotional support, and clustering of PD residents, but priority was given to topics brought up by the participants themselves. Residents and caregivers were stimulated to name suggestions for improvement.
A total of 615 interview quotes and 468 focus group quotes were allocated to codes and core themes. In both groups (interviews and group discussions), 3 core themes were identiﬁed: emotional support and empathy, staff knowledge on PD-related issues, and organization of care. Table 2 outlines the hierarchy of these core themes based on their proportion of quotes in the interviews and the focus groups. Examples of the corresponding quotes and codes of the 3 core themes are listed in Table 3. The barriers and needs for PD care in nursing homes are discussed according to these 3 core themes. For every theme, the results from the interviews are presented ﬁrst, followed by the focus group discussions.
Focus Groups Health care workers’ experiences were explored by focus group discussions. The discussions were coordinated by an independent
A. van Rumund et al. / JAMDA 15 (2014) 732e737
Table 1 Characteristics of Participants Characteristics
Patients, n Age, mean (range) Female, n Disease duration, y (range) Length of nursing home stay, mo (range) Hoehn and Yahr stage, n 3 4 5 Patients interviewed, n Caregivers interviewed, n Spouse Offspring Focus group participants, n Nurses Health care professionals Nursing home physician specialists Physical therapists Occupational therapist Speech therapist Psychologists Social worker Dietician Specialized Parkinson disease nurse
30 77.1 (60e86) 20 11.4 (3e26) 28.5 (1e123) 2 15 13 15 15 12 3 35 13 22 4 4 3 4 2 2 2 1
reported that nurses were in general not familiar with motor ﬂuctuations and were often not aware that levodopa doses have a strict time schedule and should not concomitantly be administered with proteins. They also declared that the high workload limited their ability to live up to the strict medication schedule. The nurses expressed a wish for extra training in PD care by, for example, bedside teaching, PD classes, deployment of specialized PD nurses, and knowledge sharing through an Internet community. Organization of Care Neurologist involvement A neurologist was still involved in the treatment of only 13 of 30 residents. Six residents and 5 caregivers desired involvement of a neurologist for an optimal beneﬁcial effect of PD medication and access to an expert in movement disorders (in case of a movement disorder specialist). Four residents and 2 caregivers were hesitant to pay regular visits to an outpatient clinic because of immobility and the limited consulting time. Nursing home physician specialists desired assistance in managing the complex drug management, but experienced difﬁculties getting in touch with PD-specialized neurologists. Consultation of general neurologists was considered to be of little value. Specialized PD Nurse
Emotional Support and Empathy Residents and caregivers reported problems in coping with the disease and feelings of shame. They expressed their need for more emotional support and empathy. In their opinion, the lack of empathy was often a result of limited knowledge, mainly among nurses, about PD in general and ﬂuctuations in motor functioning in particular. Health care workers also claimed that emotional support should be improved, especially the support of spouses and support at the time of nursing home admission. The following improvements were suggested: an increase in PD-speciﬁc education, peer support, and availability of tailored information for residents and caregivers.
Eighteen residents and caregivers would appreciate contact with a specialized PD nurse visiting the local nursing home. This was only the case in 6 residents. A PD nurse was considered beneﬁcial because of adequate knowledge on PD-related issues, satisfactory emotional support, and time for both resident and spouse. Two caregivers reported to have good experiences with a PD nurse in educating nursing home staff. In the focus group discussions, counseling of both residents and staff members by the PD nurse was mentioned to be valuable. The general opinion was that PD nurses should have a more prominent role in nursing homes. The one participating PD nurse claimed that in contrast to community-dwelling patients, she was not involved in the care for residents with PD on a routine basis.
Staff Knowledge on PD-Related Issues Clustering of Residents into Specialized PD Units Most residents and caregivers reported that PD-speciﬁc knowledge among health care workers was insufﬁcient. The main complaints were that nurses did not understand (1) the resident’s daily ﬂuctuations in PD symptoms and (2) the importance of timely administration of levodopa and avoiding (protein-rich) meals at the time of levodopa intake. Several participants declared that nursing home staff were often not aware of contraindications for speciﬁc drugs or investigations (eg, typical antipsychotics or magnetic resonance imaging in patients with deep brain stimulation). In addition, it was reported that nursing home physician specialists had difﬁculties with the complex drug management in PD. Health care workers opted for speciﬁc guidelines for patients with PD in nursing homes. All 3 health care professionals’ focus groups
Table 2 Hierarchy of Core Themes Core Theme
Emotional support/empathy Organization of care Staff knowledge Total
No. of Quotes (%)
No. of Quotes (%)
225 214 176 615
60 235 173 468
(36.6) (34.8) (28.6) (100)
(12.8) (50.2) (37) (100)
In the interviews, the opinions on clustering of PD residents to a specialized PD unit were explored. Six residents and 6 caregivers would prefer a PD-specialized nursing home unit; 9 residents and 9 caregivers would not. More empathy and improved treatment were reported to be the most important advantages of clustering of PD residents. Other reported advantages were better opportunities for information provision, peer support, and education. Residents considered encountering other PD residents as a disadvantage, due to the confrontation with the (future) severity of their disease. Caregivers raised objections to the potentially increased travel distance, because clustering may take place in a limited number of nursing homes. The general opinion of the health care professionals was that clustering of PD residents has important beneﬁts: more expertise and perhaps cost-effective care. But nurses also emphasized that PD care is complex and both mentally and physically demanding, which may demotivate health care workers. Budget and Staff Occupation According to the residents and caregivers, quality of care is hampered by time pressure, lack of staff, replacement of highly educated by lower-educated nurses, and frequent changes in staff.
A. van Rumund et al. / JAMDA 15 (2014) 732e737
Table 3 Examples of Related Codes and Quotes Categorized by Core Theme Core Theme
Emotional support and empathy
Lack of support/empathy for patient
Organization of care
PD nurse as mediator between nursing home and neurologist Involvement of neurologist Staff occupancy
Medication given too late
“An actual talk about emotional aspects is not possible there. And I certainly need that, really, a little support and empathy.” (Patient, male 78 years) “So I think there would be a faster feedback to the neurologist through a PD nurse.” (PD nurse) “In a late stage the neurologist is not involved anymore.” (PD nurse) “They need to work harder because they get less staff members and, well, they do their best but there is not enough money and not enough time. And they are unable to hire new ones because there is no money for it anymore.” (Patient, female 79 years) “Yes, here I’m always struggling to get my medication in time.” (Patient, female 79 years) “They are not aware that it works like that, that medication and food can’t be taken at once.” (Patient, female 70 years) “And what really bothers me is that PD knowledge is just poor.” (Spouse, female)
Medication combined with proteins Lack of PD knowledge among nurses PD, Parkinson disease.
Health care workers claimed that PD care in nursing homes is complex, time-consuming, and expensive. They stated that the available nursing home budget per PD resident is insufﬁcient to deal with this complexity. Discussion This study revealed the following unmet needs for PD care in nursing homes from the perspective of residents, caregivers, and health care workers: Unsatisfactory emotional support and empathy for residents and caregivers Insufﬁcient staff knowledge on PD-related issues Limited cooperation with PD specialists and PD nurses The next question to be answered is: what can be done to improve PD care in nursing homes? In this section, we give several recommendations based on the 3 major unmet needs found in the study. More Attention for Psychosocial Problems of Both Residents and Their Caregivers Van der Eijk et al16 studied patient-centeredness in PD care using focus group discussions with patients with PD and their caregivers. “Emotional support, empathy, and respect” was found to be the most important theme, accounting for more than one-quarter of all issues raised.16 The focus groups in that study were held with relatively young and mild to mid-stage patients with PD, whereas our patients were older and had more advanced PD. Most likely there is a need for emotional support in all stages of PD. The need for more emotional support has a close relationship with the second unmet need: PDspeciﬁc knowledge. Many residents reckoned that lack of PD knowledge (ie, nonunderstanding of response ﬂuctuations) contributed to lack of empathy. Better Staff Knowledge on PD-Related Issues Most residents, caregivers, and health care workers reported that PD knowledge among nursing home staff is insufﬁcient, resulting in suboptimal administration of medication and, as already discussed, in lack of empathy. Therefore, we believe that education of nursing home staff on PD-related issues is highly warranted. In the Netherlands, PD education programs are organized via ParkinsonNet.17 This is a national network of closely cooperating
health care professionals who are specialized in treating and coaching patients with PD or related disorders. Participating therapists are trained according to evidence-based guidelines. The quality of care is better and health care costs are markedly lower in ParkinsonNet clusters.18 Currently ParkinsonNet involves specialized professionals from multiple disciplines, and we have recently begun to also train and include nursing home physician specialists. New evaluations are needed to demonstrate whether this will lead to a further improvement in quality of care. In this regard, it is noteworthy that an Australian study already demonstrated that improving nursing home staff knowledge (using an education program) led to a signiﬁcant and clinically meaningful improvement in care for residents with parkinsonism.12 We recommend that in every nursing home at least several health care workers specialize in PD care by joining an education program. Increased Access to Specialist Care Literature ﬁndings suggest that neurologist involvement in the care of patients with PD may be associated with improved clinical outcomes and greater survival. A retrospective observational cohort study reported that neurologist-treated patients with PD were less likely to be placed in a nursing home and had a lower risk of hip fracture.19e21 In Norwegian nursing home residents with PD, fewer than half of the patients received optimal care11,22 and adjustment of medications markedly improved quality of life even for these residents by, for example, reducing cognitive side effects or dyskinesias. This should preferably be done by a movement disorder specialist. The latter was also reported in our study: nursing home physician specialists stated that a general neurologist’s contribution to the complex late-stage PD treatment was limited and residents considered access to specialist care as valuable. In general hospitals, the scheduled time for patients with PD is often limited, as was reported by the participants. There is support from a study among American military veterans with PD that involvement of a movement disorder specialist was associated with better PD care compared with both general neurologist involvement and non-neurologist involvement.23 Another study concluded that treatment of institutionalized patients with PD is optimal when a neurologist visits patients in their own environment in cooperation with the local physician.24 Often, residents are too frail to attend an outpatient clinic. An alternative is involvement of a specialized PD nurse, who functions as a liaison between the nursing home professionals and neurologist. This PD nurse may take
A. van Rumund et al. / JAMDA 15 (2014) 732e737
over several tasks of the neurologist. Our own experience with a hospital-based specialized PD nurse visiting the local nursing home is good. A randomized trial suggests that involvement of a PD nurse improves patients’ sense of well-being, with no increase in patients’ health care costs.25 However, in the Netherlands and in many countries across Europe, many regions do not have access to a PD nurse specialist.26,27 Clustering of PD residents in a number of dedicated nursing homes would make visits by a movement disorder specialist easier. Lökk28 gave an account of 5 years of positive experience with a PD permanent care unit. Clustering may also increase PD-speciﬁc expertise among nursing home staff and optimize treatment of motor symptoms. In a previous study, we showed that nursing home residents appeared to be undertreated, with almost 50% of the patients being “off” a large part of the day and only a low percentage had dyskinesias.13 When the residents’, caregivers’, and health care workers’ notes of caution concerning specialized PD care units are taken into account (confrontation with other patients with PD, long travel distance, and high work load), specialized care units for PD seem to have the best opportunities to meet the recommendations mentioned in this article. Shortcomings This study is not without shortcomings. There is a possibility of selection bias for the following reasons. Residents with marked cognitive impairment (MMSE