Perspectives on Parkinson Disease Care in Dutch Nursing Homes

Rumund, Anouke van; Weerkamp, Nico J.; Tissingh, Gerrit; Zuidema, Sytse U.; Koopmans, Raymond T.C.M.; Munneke, Marten; Poels, P.J.E.; Bloem, Bastiaan R.

doi:10.1016/j.jamda.2014.05.009

Cited by 33 publications

(58 citation statements)

References 24 publications

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“…In interviews conducted in Dutch nursing homes, lack of staff knowledge regarding motor fluctuations in PD, including the importance of timely administration of levodopa and avoidance of protein‐rich meals at the time of l ‐dopa intake to minimize off time was one of residents' and caregivers' main complaints. This lack of understanding was felt to contribute to a lack of empathy . We identified no studies investigating physician understanding.…”

Section: Resultsmentioning

confidence: 98%

“…Three studies reported on the impact of off periods on carepartners of patients (Table ) . Carepartners need to play a more active role both to help patients in public and at home during off periods .…”

Section: Resultsmentioning

confidence: 99%

“…Additionally, off periods force patients and carepartners to compromise and develop strategies that allow the person with PD to get the help they need, but, at the same time, allow spouses to be able to do the things they like to do . Carepartners of patients residing in nursing homes expressed the need for more emotional support, particularly related to off periods …”

Section: Resultsmentioning

confidence: 99%

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Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

Rastgardani

Armstrong

Gagliardi

et al. 2018

Movement Disord Clin Pract

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Background Off periods are a common and disabling symptom of Parkinson's disease. We reviewed published research on understanding, impact, and communication regarding off periods to identify issues warranting further research. Methods We performed a scoping review, searching MEDLINE, EMBASE, Cochrane Library, CINAHL, and PsycINFO from 2006 to January 2018 for studies examining the impact of, understanding of, or communication about off periods. Results Twenty‐six papers met eligibility criteria. Twenty‐three studies evaluated the impact or experience of off periods in patients, three evaluated the impact upon carepartners, two papers addressed understanding of off periods, one study evaluated communication about off periods, and three studies evaluated a facilitator of communication about off periods. The findings indicate that (1) off periods are among the most troublesome symptoms to patients and that their impact on activities is broad; (2) the understanding of off periods by patients, carepartners, and nurses may be suboptimal; and (3) questionnaires hold promise as a mechanism for facilitating communication given the findings that they may enhance the detection of off periods and are rated as useful by physicians. No studies evaluated interventions to promote knowledge about off periods, and no studies identified barriers of communication about off periods. Conclusions There is a paucity of knowledge regarding the lived experiences of off periods, particularly for carepartners. Additionally, little knowledge exists in the literature regarding understanding of and communication about off periods between patients or carepartners and treating physicians. Further research is required to explore these issues to ultimately improve the treatment of off periods.

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Section: Resultsmentioning

confidence: 98%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

Rastgardani

Armstrong

Gagliardi

et al. 2018

Movement Disord Clin Pract

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“…In a qualitative study conducted in the Netherlands, patients reported a similar lack of access, as well as a lack of emotional support and insufficient staff knowledge on PD-related issues (e.g. motor fluctuations and the need for adherence to medication timing) [87].…”

Section: Nursing Home and End Of Life/palliativementioning

confidence: 99%

Unmet needs in Parkinson's disease: New horizons in a changing landscape

Bhidayasiri

Laar

2016

Parkinsonism & Related Disorders

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a b s t r a c tThe success of levodopa and other classes of drugs have meant that most people with Parkinson's disease enjoy a good quality of life for many years. However, despite the availability of several drugs and formulations that can be used as monotherapy and in combination, there are a number of disease features that the current therapies are unable to address. The disease continues to progress despite treatment, patients suffer from a myriad of motor and non-motor symptoms, and a neuroprotective therapy is urgently required. To move forward with medical and surgical management, it is important to consider new insights that recent research offers and in this review we examine how a better understanding of the disease pathology and progression might improve and enrich our daily clinical practice. It is also timely to consider the service provision changes that will increasingly be needed to effectively manage the needs of the aging population.

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“…Family members are usually the primary caregivers of patients with moderate PD 4 . However, support may also be needed from nurses working in outpatient care or in nursing homes [5][6][7] . Medication schemes for patients with PD are often very complex; inadequate compliance with medication is an issue and can have clinical consequences 8,9 .…”

Section: Introductionmentioning

confidence: 99%

Caregivers’ and physicians’ attitudes to rotigotine transdermal patch versus oral Parkinson’s disease medication: an observational study

Sieb

Themann

Warnecke

et al. 2015

Current Medical Research and Opinion

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Objective:To provide real-world data on caregiver and physician perceptions of the advantages and disadvantages of rotigotine transdermal patch (Neupro*) versus oral Parkinson's Disease (PD) medication. Methods:Cross-sectional, non-interventional study in routine clinical practice in Germany (NCT01330290). Patients had PD with documented need for care, and had received rotigotine transdermal patch as add-on to oral PD treatment for !1 month. Caregivers/nurses and physicians assessed rotigotine transdermal patch versus oral PD medications using questionnaires. Specific questions regarding the possible benefits of transdermal application were asked and comprised questions on: swallowing dysfunction, nausea/vomiting, monitoring therapy, once daily application, application independently from meals, application to sleeping patients, caregiving efforts (caregivers only) and clinical aspects (physicians only). Each question was assessed on a 5 point scale ranging from -2 (major disadvantage) to 2 (major advantage) compared with oral treatment. Primary outcomes were mean total scores of all questions for caregivers/nurses and physicians who provided responses for !4 questions. As there are no validated tools to assess physician/caregiver preference in the PD setting, there is no reference against which the current findings can be compared; this study serves to pilot the questionnaires. Results:Questionnaire responses from 128 caregivers/nurses and 41 physicians were documented for 147 patients. One hundred (68%) patients had a caregiving family member; 40 (27%) were cared for by a nurse. Mean PD duration was 8.2 (SD 6.3) years; 136 (93%) patients were taking levodopa. Mean total score of caregivers'/ nurses' questionnaires was 1.32 (SD 0.67) and of physicians' questionnaires was 1.46 (0.32) indicating a perceived advantage of rotigotine transdermal patch over oral PD therapy. Mean scores for individual questions were in the range 1.03-1.54 for caregivers/nurses and 1.15-1.87 for physicians. When given a choice about rationale to prescribe, physicians cited pharmaceutical form (patch) in 139 (95%) cases and active agent (rotigotine) in 89 (61%) cases. Conclusion:Caregivers/nurses and physicians perceived advantages with rotigotine transdermal patch compared to an oral PD medication as add-on therapy in patients with PD; advantages were observed in aspects of medical treatment as well as in everyday situations of caregiving of PD patients.*Neupro is a registered trade name of UCB

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Perspectives on Parkinson Disease Care in Dutch Nursing Homes

Cited by 33 publications

References 24 publications

Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

Unmet needs in Parkinson's disease: New horizons in a changing landscape

Caregivers’ and physicians’ attitudes to rotigotine transdermal patch versus oral Parkinson’s disease medication: an observational study

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