Advanced Care Planning in Parkinson's Disease: In-depth Interviews With Patients on Experiences and Needs

Abstract

Introduction: Advance care planning (ACP) is an iterative process of discussing the needs, wishes, and preferences of patients regarding disease-specific and end-of-life issues. There is ample evidence that ACP improves the quality of life and promotes the autonomy of patients with cancer and motor neuron disease who have a high disease burden and shortened life expectancy. In Parkinson's disease (PD) though, knowledge about the experiences and preferences of patients regarding ACP is scarce, despite the major disease burden associated with PD.Aim: This study aims to explore the experiences, needs, and preferences of PD patients regarding the content and timing of ACP.Methods: In-depth interviews were conducted with a purposively selected sample of patients diagnosed with PD. Using a semi-structured topic list, the participants were asked about their prospects for a future living with PD and with whom they wanted to discuss this. Qualitative analysis was performed in parallel with data collection using a data-driven constant comparative approach. The transcribed interviews were coded and analyzed by two researchers using MAXQDA software.Results: Of all 20 patients (13 males; age 47–82; disease duration 1–27 years), most expressed a wish to talk about ACP with a healthcare provider, enabling them to anticipate the uncertain future. The majority of patients preferred their healthcare provider to initiate the discussion on ACP, preferably at an early stage of the disease. Nearly all patients expressed the wish to receive more information regarding the long-term impact of PD, although, the preferred timing varied between patients. They also perceived that their neurologist was primarily focused on medication and had little time to address their need for a more holistic approach toward living with PD.Conclusion: Our results suggest that PD patients are in need of discussing ACP with their healthcare provider (HCP), even in the early stages of the disease. In addition, PD patients perceive a lack of information on their disease course and miss guidance on available supportive care. We recommend HCPs to inquire the information requirements and preferences of patients regarding ACP regularly, starting soon after diagnosis.

The perspectives of patients with Parkinson's Disease: A qualitative systematic review

“…The thirteen included studies were published from 2004 to 2021, with one study from 2004 [20] and the remaining twelve studies from 2014 to 2021. There were four studies from the US, [21][22][23][24] two each from the UK, [25,26] Australia [27,28] and the Netherlands, [29,30] and one from each of Sweden, [20] New Zealand, [31] and Canada. [32] Most of the studies reported a specific purpose -e.g., how patients view the role of their GP, [29] or patients' perceptions of a specific exercise [22,27,31] or prevention program, [21] or of their perioperative experiences.…”

“…[24] Most of the studies used coding and thematic analyses, though one study applied saliency analysis, [28] one used grounded theory, [27] one used a constant comparative approach for analysis [29] and one a data-driven constant comparative approach. [30] Details of study characteristics are presented in Table 1.…”

Awareness of Dysphagia-Related Complications and Risks and the Importance of Early Intervention in Patients with Parkinson’s Disease: A Qualitative Study

“…Kurpershoek et al [38] conducted in-depth interviews with 20 patients with PD to understand their needs and wishes for an early nursing intervention plan. Te results revealed that most people realized that their neurologists mainly focused on drug treatment and had little time to solve their needs for more comprehensive methods of living with Parkinson's disease, indicating that they lacked supportive nursing guidance.…”

Parkinson's disease and Covid-19: Is there an impact of ethnicity and the need for palliative care

“…It includes considerations about disease- and symptom-specific treatment, resuscitation and other life-prolonging modalities, treatment restrictions, end-of-life wishes and appointment of surrogate decision-makers ( Walter, Seeber, Willems, & de Visser, 2018 ). ACP is most effective when initiated early, alongside curative therapies, allowing patients, their next-of-kin and caregivers to proactively address the challenges together, and is associated with better quality of life, reduced rates of stress, anxiety and depression and less hospital admissions ( Kurpershoek et al, 2021 ; Walter et al, 2018 ).…”

“…However, although PwP prefer their health-care professionals to raise the subject of ACP, their desire to discuss advance care preferences ranges from early following the diagnosis to later stages of PD, and it might be challenging for clinicians to ascertain the level of readiness for such discussions ( Kurpershoek et al, 2021 ; Miyasaki & Robinson, 2020 ). For example, neurologists mostly initiate the ACP at the terminal stages of PD ( Walter et al, 2018 ).…”