Health-related quality of life in Parkinson’s: impact of ‘off’ time and stated treatment preferences

Kerr, Cicely; Lloyd, Emily J.; Kosmas, Charlotte E; Smith, Helen; Cooper, James A.; Johnston, Karissa; McIntosh, Emma; Lloyd, Andrew

doi:10.1007/s11136-015-1187-0

Cited by 19 publications

(21 citation statements)

References 33 publications

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“…Twenty‐two studies addressed the impact of “off” periods on patients (Table and Supporting Table 1). Eleven studies demonstrated an association between off periods and poorer HRQoL using generic or disease‐specific HRQoL scales . Motor symptoms described during off periods were diverse, including slow movements, decreased dexterity, tremor, stiffness, weakness, speech difficulty, balance difficulty, falls, and muscle cramps .…”

Section: Resultsmentioning

confidence: 99%

“…Two studies found that 39‐item Parkinson's Disease Questionnaire (PDQ‐39) mobility scores were worse in patients with motor fluctuations . Motor limitations during off periods also have an impact on activities: The 10 most affected activities were, in order of frequency: dressing, hygiene, getting around the house, communicating effectively, walking short distances, looking after the home, moving in bed, cutting food, getting around public places, and writing . Not surprisingly, off periods were associated with poorer PDQ‐39 activities of daily living scores …”

Section: Resultsmentioning

confidence: 99%

“…Off periods also impact daily experiences of patients. Patients report that motor fluctuations force them to schedule their days around medication timing and cause them to leave the home less often . Off periods make social situations less comfortable and harder to plan and may prompt them to avoid them altogether.…”

Section: Resultsmentioning

confidence: 99%

“…The risk of off periods makes it impossible for some patients to leave the house without a carepartner. Patients report being uncomfortable if off symptoms occur in public, which can lead to avoidance of meeting people or speaking with strangers . Some of the difficulty with socialization relates to an impaired ability to communicate verbally during 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: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

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

Rastgardani

Armstrong

Gagliardi

et al. 2018

Movement Disord Clin Pract

View full text Add to dashboard Cite

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“…Some studies have derived utilities using the EQ-5D in multiple countries including Italy. [8][9][10] While these studies allow for comparisons across countries, the preferences and resulting utilities are not directly comparable because the EQ-5D values are based on patients' ratings of their own unique health, and there could be substantial variation in patient sample characteristics across countries. No studies were located that provide the opportunity for comparing utility values for the same health states in Italy and other countries.…”

Section: Introductionmentioning

confidence: 99%

Patient Preferences In Italy: Health State Utilities Associated With Attributes Of Weekly Injection Devices For Treatment Of Type 2 Diabetes

et al. 2017

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How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study

et al. 2021

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Background Health fluctuations even within a single day are typical in multiple sclerosis (MS), but are not captured by widely used questionnaires like the EQ-5D-5L. This exploratory study aimed to develop an ambulatory assessment (AA) version of the EQ-5D-5L (EQ-5D-AA) where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility and face validity. Methods An initial EQ-5D-AA version was based on two patient focus groups. It was then tested and continuously developed in an iterative process: patients completed it over several days, followed by debriefing interviews. Findings were used to refine the EQ-5D-AA, with the resulting version being tested by the subsequent wave of patients until participants declared no need for changes anymore. Before and after the AA period, participants completed the standard paper-based EQ-5D-5L asking about ‘today’. Results Focus group participants reported that their impairments often fluctuated between and within days. They regarded an AA with three assessments per day over seven days most appropriate; assessment should be retrospective to the previous assessment, but not all items should be assessed at each time point. Four waves of AA testing were conducted. Thirteen out of the 17 participants preferred the AA over standard assessment as they regarded it more informative, but not too burdensome. Conclusion The newly developed one-week AA of the EQ-5D-5L captures within-day and day-to-day health fluctuations in people with MS. From the patients’ perspective, it is a feasible and face valid way to provide important information beyond what is captured by the standard EQ-5D-5L.

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Health-related quality of life in Parkinson’s: impact of ‘off’ time and stated treatment preferences

Abstract: 'On time' and predictability of 'off time' are highly valued by PwP. Due to substantial diurnal variation of Parkinson's symptoms, standard patient-reported outcome (PRO) assessments may not adequately capture the impact of 'off time' on HRQL and participation in daily activities.

Cited by 19 publications

References 33 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

Patient Preferences In Italy: Health State Utilities Associated With Attributes Of Weekly Injection Devices For Treatment Of Type 2 Diabetes

How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study

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