In interviews with patients with Parkinson disease and their care partners, study authors noted that OFF periods can impair socialization, physical function, leisure activities, driving, and other means of independence.
A study published in Neurology: Clinical Practice has investigated the impacts of OFF periods on both persons with Parkinson disease (PwP) and their care partners. Their work yielded much-needed additional context to fill in gaps in the existing literature so that others in health care may generate better approaches to treatment decision-making and counseling.
OFF periods are occasions where functionality impairment reappears, worsens, or otherwise results in additional functional disability.
Forty participants were involved in the study’s data collection: 20 PwP and their 20 care partners. The authors utilized convenience sampling to recruit through Fox Trial Finder and emails to the Parkinson Disease Foundation Care Partner 2016 Summit mailing list.
Interviews occurred between March and November 2017. Care partners included 17 spouses, 1 son, 1 brother-in-law, and 1 close friend. Interviews were conducted with a semistructured questionnaire and a qualitative descriptive approach to identify themes that could be mapped to 6 World Health Organization functional domains relating to quality of life after axial coding was complete.
Among the themes elicited by the interviews with PwP and their care partners, authors noted primary complications of impairments to PwP socialization, physical function, leisure activities, driving, and other means of independence. The need to plan days around medication timing was cited on top of other limitations to work, such as forced early retirement, and household activities becoming much more difficult.
The study authors included participant quotes that exemplified the physical and psychological toll of OFF periods. “I’m a very active person, type A, go, go, go…but when you have an OFF period, it’s like somebody has just put you in a straitjacket. There’s absolutely nothing you can do,” reported one patient.
In turn, care partners reported OFF period impacts on their own independence, psychological experiences, leisure, and socialization. The most frequently reported effects for them were psychological, including stress, frustration, sadness, and fear during OFF periods.
The authors noted that some patients reported very little impact on their lives from OFF periods whereas their caretakers described significant impacts, and vice versa. Variances in PwP and care partner reports were attributed to potential differences in acceptance levels, attentiveness, priorities, personalities, cognitive impairment in PwP, and the nature of reflecting on personal experiences.
By numbers, the authors shared that less than half of PwP discuss OFF period symptoms at their medical appointments. Only 34% of care partners discuss the impact of OFF symptoms on their own lives. A majority of both PwP and care partners reported being dissatisfied with their physicians’ level of engagement with their concerns regarding OFF period impacts.
To this end, the authors suggest that clinicians would obtain an incomplete assessment of conditions if they query only 1 dyad member during care.The authors thus recommend clinicians follow up on the impacts of OFF periods with both PwP and their caretakers during visits, as well as incorporate that information into clinical trials to help ascertain the effects of interventions for fluctuations.
Strengths of the study included the semistructured interviews allowing for unique OFF period impacts to be described, capturing a variety of experiences. The use of qualitative methods and review by 4 investigators was also a strength, as well as the assessment of impacts on PwP and care partners as both a dyad and individually.
The authors note that more interviews could theoretically identify additional effects, as well as interviewing dyad members concurrently instead of separately.
Limitations were present related to generalizability. The study did not use maximum variance sampling. Participants had to recognize when an OFF period occurred and be involved in a care dyad in the first place, which limited information collection on PwP living alone or whose partners did not participate in the study. Participants were only based in the United States, and the study did not have data on race/ethnicity, educational attainment, or the amount of OFF time that occurred. The authors also believe involving PwP or care partners as coinvestigators could result in different interpretations of the themes.
“These findings can be used by clinicians to inform history taking to better guide medical decision making and promote patient-centered care,” the authors concluded.
Armstrong MJ, Rastgardani T, Gagliardi AR, Marras C. Impact of off periods on persons with Parkinson disease and care partners: a qualitative study. Neurol Clin Pract. 2021;11(3):e232-e238. doi:10.1212/CPJ.0000000000000921