Objective: To assess satisfaction with care in patients with late stage Parkinson’s disease (PD) and to identify factors associated with patient satisfaction with care. Moreover, to assess informal caregivers’ satisfaction with support and to identify factors associated with caregivers’ satisfaction with support.

Background: In the late and most severe stage of PD, both motor and non-motor symptoms (NMS) are pronounced and the patients become increasingly dependent on help from others in their daily life. Consequently, there is an increasing demand on health and social care resources for these patients and support for their informal caregivers. Increased knowledge regarding factors associated with satisfaction with care and support in late stage PD could serve as an important base for optimizing health and social care for this patient group.

Method: The sample consisted of 107 late stage PD (i.e., Hoehn and Yahr [HY] stages IV-V) patients in Sweden and their informal caregivers (n = 76). Satisfaction with care/support was assessed by a study specific question with five response categories, which were dichotomized as satisfied (very satisfied or satisfied) and not satisfied (neutral, unsatisfied or very unsatisfied). Factors potentially associated with satisfaction with care/support were assessed and entered into multivariable logistic regression analyses.

Results: Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; P = 0.044), less depressive symptoms (GDS-30; P = 0.005) and higher individual quality of life (QoL) (SEIQoL-Q; P = 0.036). Multivariable logistic regression analyses identified satisfaction with care as negatively associated with depressive symptoms (P = 0.015) and positively associated with independence in ADL (P = 0.025). For informal caregivers, the analyses identified satisfaction with support as positively associated with patient HY stage (P = 0.005) and negatively associated with caregiver QoL (ACQLI; P = 0.012).

Conclusion: The results indicate that an effective both pharmacological and non-pharmacological PD therapy is important; to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/satisfaction-with-care-in-late-stage-parkinsons-disease/