Barriers and facilitators to diagnosing and managing apathy in Parkinson’s disease: a qualitative study

Abstract

Background Apathy is a prominent non-motor symptom in Parkinson’s disease (PD). People with apathy show a lack of emotion, passion, and motivation. Between 17 and 70% of persons with PD have apathy; the extreme heterogeneity in these estimates is due to limited heterogeneous knowledge concerning how to diagnose PD. The lack of a widely utilized diagnostic process limits understandings on how to treat and manage apathy in PD. A scoping review of apathy in PD identified only one qualitative study investigating this symptom. It was our objective to assess perceived barriers and facilitators to diagnosing, treating, and managing apathy in PD, as described by key stakeholders. Methods This research applied qualitative methodology, utilizing focus groups and interviews with health care practitioners (HCPs), persons with PD, and caregivers. Evidence gathered from a scoping review on apathy in PD informed discussions that took place with participants. Data collection and analysis was conducted using framework analysis, applying the Theoretical Domains Framework and Behaviour Change Wheel. Results Eleven HCPs and five persons with PD/caregivers participated. Themes included interdisciplinary teams and communication with family to facilitate diagnosis and treatment, and the use of education and increased awareness of apathy to facilitate management. Themes surrounding barriers included lack of initiative and motivation to maintain treatment plans, and a lack of evidence for apathy specific interventions. While a key barrier identified was the lack of information HCPs have access to, persons with PD and caregivers would prefer to receive a diagnosis of apathy even with limited management methods. Thus, education and awareness were noted as two of the most important facilitators, overall. Conclusion These findings suggest that diagnosing, treating, and managing apathy in PD requires interdisciplinary teams, that include family and caregivers. We identified that where HCPs perceive lack of knowledge as a barrier to diagnosis, persons with PD and caregivers find being given a diagnosis facilitates understanding. These findings highlight the importance of qualitative research involving persons with PD and apathy, caregivers, and HCPs who aid in management of this symptom. Barriers reported suggest future research must aim to identify apathy specific treatments, both pharmacologic and non-pharmacologic.

H2S alleviates Parkinson-like phenotypes by modulating lncRNA-CasC7/miR-30c/BNIP3L signaling pathway

“…Although the exact etiology of PD remains unclear, levodopa is widely used to treat PD. However, levodopa only ameliorates PD symptoms, and cannot cure the disease or reverse the progressive degeneration of dopaminergic neurons [18][19][20][21]. Thus, novel therapeutic agents are urgently needed to effectively treat PD.…”

Non-pharmacologic interventions to treat apathy in Parkinson’s disease: A realist review

“…If a clinician is considering an exercise intervention, they should consider programs that include expert coaching, adapted programs for persons with PD, access to equipment, and non-medicalized facilities to practice exercise. While this program theory highlights some of the key mechanisms that help facilitate exercise interventions that decrease levels of apathy in persons with PD, accessibility to these programs and resources may be a significant barrier to participation [8] .…”

“…There is no single recommended treatment for apathy in Parkinson’s disease (PD). Health care providers report pharmacologic interventions can work in some persons with apathy and PD, however not all patients are keen to initiate medications due to risk of adverse effects [8] . Pramipexole, a dopamine agonist improves mood and motivation in some persons with PD [9] , but has important adverse effects, including impulse control disorders, and may precipitate hallucinations and cognitive impairment in older persons.…”

“…However, cholinesterase inhibitors, like rivastigmine and galantamine have side effects, and it is unclear if the benefits outweigh the risks [10] , [11] , [12] . Persons with PD and apathy report they prefer non-pharmacologic interventions, but feel these options are not often available to them [8] .…”

“…Barriers to utilizing non-pharmacologic interventions to treat apathy include a lack of evidence concerning best treatment options and lack of treatment guidelines [8] . Examples of non-pharmacologic interventions for persons with apathy and PD include a Nordic walking program, which was regularly adapted to individual participant needs [13] .…”