Identifying important issues for people with Parkinson's disease

Hayes, C

doi:10.12968/bjon.2002.11.2.9309

Cited by 14 publications

(7 citation statements)

References 10 publications

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“…This study showed that PD patients are under-informed about critical aspects of their care, as was found previously [ 18 , 26 , 27 ]. A qualitative study from New Zealand on unmet needs showed that PD patients wanted their physicians to offer more information about their condition [ 26 ].…”

Section: Discussionsupporting

confidence: 81%

“…A qualitative study from New Zealand on unmet needs showed that PD patients wanted their physicians to offer more information about their condition [ 26 ]. Moreover, a British study demonstrated that PD patients were poorly informed about medication and treatment options [ 27 ]. Application of the PCQ-PD in a large Dutch sample certified that patients were in need for information regarding alternative health therapies and treatment options of allied health professionals [ 18 ].…”

Section: Discussionmentioning

confidence: 99%

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Capturing patients’ experiences to change Parkinson’s disease care delivery: a multicenter study

et al. 2015

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Capturing patients’ perspectives has become an essential part of a quality of care assessment. The patient centeredness questionnaire for PD (PCQ-PD) has been validated in The Netherlands as an instrument to measure patients’ experiences. This study aims to assess the level of patient centeredness in North American Parkinson centers and to demonstrate the PCQ-PD’s potential as a quality improvement instrument. 20 Parkinson Centers of Excellence participated in a multicenter study. Each center asked 50 consecutive patients to complete the questionnaire. Data analyses included calculating case mix-adjusted scores for overall patient centeredness (scoring range 0–3), six subscales (0–3), and quality improvement (0–9). Each center received a feedback report on their performance. The PCQ-PD was completed by 972 PD patients (median 50 per center, range 37–58). Significant differences between centers were found for all subscales, except for emotional support (p < 0.05). The information subscale (mean 1.62 SD 0.62) and collaboration subscale (mean 2.03 SD 0.58) received the lowest experience ratings. 14 centers (88 %) who returned the evaluation survey claimed that patient experience scores could help to improve the quality of care. Nine centers (56 %) utilized the feedback to change specific elements of their care delivery process. PD patients are under-informed about critical care issues and experience a lack of collaboration between healthcare professionals. Feedback on patients’ experiences facilitated Parkinson centers to improve their delivery of care. These findings create a basis for collecting patients’ experiences in a repetitive fashion, intertwined with existing quality of care registries.Electronic supplementary materialThe online version of this article (doi:10.1007/s00415-015-7877-2) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 81%

Section: Discussionmentioning

confidence: 99%

Capturing patients’ experiences to change Parkinson’s disease care delivery: a multicenter study

et al. 2015

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“…In a survey of 120 people with Parkinson's disease, issues of self-management, such as knowing how to respond to changing symptom displays and when to seek medical help, were identified as issues of high importance (Hayes, 2002). Collaborative management involves patient and healthcare practitioners working together to identify and solve problems to promote the patient's health in daily life.…”

Section: Resultsmentioning

confidence: 99%

Self-Management of Parkinson's Disease: Guidelines for Program Development and Evaluation

Lyons¹

2004

Phys. & Occupational Therapy In Geriatrics

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Numerous self-management training programs have been created for persons with chronic illness to assist them in cultivating the skills and confidence to promote their own health and well-being. However, self-management training is rarely explicitly discussed regarding the population of people who have Parkinson's disease. This paper reviews published theoretical and empirical literature to identify guidelines that should be considered when developing and evaluating self-management training programs for persons with Parkinson's disease. Self-management of disease is presented as one aspect of a collaborative management approach to healthcare in which patients, caregivers, and healthcare practitioners are all working in concert toward explicit, shared, and specific goals.

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“…However, having good knowledge on medication and its effects has a positive effect on adherence [18,20,21]. Patients themselves have expressed a desire for more information from their HCPs [19,22,23], especially about the ADRs of a drug, as illustrated in a survey of more than 2000 respondents, where close to 80% wanted information on all possible side effects of a drug [24]. The knowledge of what to expect and how to deal with it increases confidence and was seen as an independent predictor of adherence [20].…”

Section: Discussionmentioning

confidence: 99%

A qualitative exploration of the healthcare challenges and pharmaceutical care needs of people with Parkinson’s and their caregivers

et al. 2021

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Background People with Parkinson’s are at higher risk of healthcare and pharmaceutical care issues. Objective To determine the healthcare challenges, pharmaceutical care needs, and perceived need of a pharmacist-run clinic by people with Parkinson’s and their caregivers. Setting Malaysian Parkinson’s Disease Association. Method A focus group discussion adopting a descriptive qualitative approach was conducted involving people with Parkinson’s and their caregivers. A semi-structured interview guide was used to determine the challenges they faced with their medications and healthcare system, their pharmaceutical care needs, and their views on a pharmacist-run clinic. Data was thematically analysed. Main outcome measure: Healthcare challenges faced by people with Parkinson’s and caregivers along with their pharmaceutical care needs and perceived need of a pharmacist-run clinic. Results Nine people with Parkinson’s and four caregivers participated. Six themes were developed: (1) “It’s very personalised”: the need for self-experimentation, (2) “Managing it is quite difficult”: challenges with medication, (3) “The doctor has no time for you”: challenges with healthcare providers, (4) “Nobody can do it except me”: challenges faced by caregivers, (5) “It becomes a burden”: impact on quality of life, and (6) “Lack of consistency could be counterproductive”: views on pharmacist-run clinic. Conclusion The provision of pharmaceutical care services by pharmacists could help overcome issues people with Parkinson’s face, however there is a need for them to first see pharmacists in their expanded roles and change their limited perception of pharmacists. This can be achieved through integration of pharmacists within multidisciplinary teams in specialist clinics which they frequent.

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Identifying important issues for people with Parkinson's disease

Cited by 14 publications

References 10 publications

Capturing patients’ experiences to change Parkinson’s disease care delivery: a multicenter study

Capturing patients’ experiences to change Parkinson’s disease care delivery: a multicenter study

Self-Management of Parkinson's Disease: Guidelines for Program Development and Evaluation

A qualitative exploration of the healthcare challenges and pharmaceutical care needs of people with Parkinson’s and their caregivers

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