“There is generally no focus on my pain from the healthcare staff”: A qualitative study exploring the perspective of patients with Parkinson’s disease

2.1 Qualitative method

We applied a reflexive thematic analysis to explore the complexity and rich nuances of pain in PD [24]. This qualitative method was chosen as it places great emphasis on the influence of the subjectivity of investigators in a study. The method allowed us to recognize and integrate the mutual relation between us as researchers and patients in the study. Thus, this method allowed us to gain in-depth insights into firsthand experiences with the topic, i.e., how patients perceive, interpret, and make sense of pain in PD.

2.2 Design

Fifteen semi-structured individual interviews [25] were conducted at the Department of Psychology and Behavioral Sciences at Aarhus University, Denmark (N = 13) or online via Zoom (N = 2).

2.3 Data collection

Data were collected between 25 January, 2022 and 15 February, 2022. All interviews followed the same interview guide and procedure and were conducted by the same interviewer.

2.4 Sample

Participants were recruited from the Danish Parkinson´s foundation district Eastern Jutland, Denmark. Vice chair of the district approached all members of the foundation (N = 833) by email to introduce the study. Interested participants responded to investigator STM either by email or phone call (N = 25) and would then receive further verbal information on the study and assessment of eligibility. Inclusion criteria: diagnosed with PD by means of the MDS clinical diagnostic criteria for Parkinson´s disease [27]. Exclusion criteria: inability to speak and understand Danish.

After 15 interviews, the investigators experienced data redundancy where the same nuances were observed repeatedly across interviews and thus concluded saturation was reached [28,29]. To acquire adequate variation in range of patient experiences, the study used a purposeful sampling strategy [30] aiming for heterogeneity regarding gender, age, and PD severity. Subjects excluded due to control of heterogeneity (N = 10 men) were notified immediately when they contacted STM.

Participants were nine men and six women (Table 2). Participants received a box of chocolate as compensation for participation.

2.5 Data analysis

Recorded interviews were transcribed, reproducing speech content verbatim, without paraverbal communication. Transcripts were not returned to participants for comments. Then, ASA and STM conducted a reflexive thematic analysis [31] to identify, analyze, and interpret patterns of meaning on pain in PD across interviews. The analytic process had six stages and in accordance with standard procedures [32], investigators moved back and forth between stages.

First, ASA and STM independently familiarized themselves with data (stage 1) by reading and re-reading all transcribed interviews. When reading interviews, both investigators noted inductive initial ideas for categorization in the right-hand margin when finding interview data relevant for a rich and nuanced understanding of the topic. E.g., ASP noted “Experience pain as related to PD” next to the passage “Pain is caused by the rigidity you get - the stiffness.”

Next ASA and STM generated initial codes (stage 2). They made coding trees based on their inductive ideas for categorization. Then, they read each transcript systematically and repeatedly while searching for similarities and contradictions across interviews in relation to coding trees. Codes were words, phrases, or sentences that captured a meaningful pattern across interviews, e.g., “The nature of pain in PD.” For each code, ASA and STM gathered relevant interview data, i.e., written passages from all transcribed interviews, which were connected to the code. Completing this analytic stage, ASA and STM shared and discussed their individual initial coding.

ASA constructed themes (stage 3). Investigators located both latent and manifest patterns of meaning across interviews and organized codes into themes describing firsthand experiences with pain in PD, e.g., “Treatment of pain is insufficient.”

Themes were reviewed by ASA, STM and LV (stage 4) who controlled that each theme matched both codes and full dataset. A thematic map of analysis was generated in which a total of five candidate themes were reduced to three.

Then, clear definitions of each theme were created (stage 5) by ASA through an ongoing analysis. ASA identified major themes, e.g., “pain is related to PD” as well as diverse cases and minor themes, e.g., “PD motor symptoms cause pain.”

ASA produced the report (stage 6) and validated findings by referring each theme to words, sentences, and passages in transcribed interview. The report was continuously revised in consultation with STM and LV. ASA controlled consistency between conclusions vs literature, transcribed interviews and initial research question of how patients with PD experience their pain and pain treatment. Quotes illustrating each theme were selected and translated from Danish to English by a professional translator. Findings were reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist [33].

3.1 Theme 1: Pain is related to PD

3.2 Theme 2: Healthcare professionals neglect pain in PD

3.3 Theme 3: Treatment of pain is insufficient

4.1 Patients believe that PD and pain are related but describe that healthcare professionals disagree – we encourage healthcare professionals to be aware that patients experience a discrepancy

Most participants in the current study expressed that they experience pain on a daily basis, which confirms existing literature reporting high prevalence of pain in PD [1,3,14,34]. Likewise, participants were confident that their pain was related to PD and they believed that pain in PD is caused by motor symptoms, in accordance with previous studies [14], and associated with sleep disturbances. Nuancing, participants often described how they experience healthcare professions believe that pain is not related to PD (Figure 1). Literature suggests patients have diverse perceptions regarding the causes of pain in PD [14]. Yet causative beliefs can be shaped by options of health care professionals. This could indicate a need for investigating the specific association between PD and pain further. It is recognized that pain may or may not be related to PD depending on the type of pain [35,36]. While adequate classification may be important for the treatment of pain in PD, identifying the underlying cause in an individual patient can be difficult [37]. Our results indicate that it is important to discuss pain and patient beliefs as a course of pain.

Figure 1

The discrepancy in beliefs on pain in PD. Adapted from Unsplash (Stock Photo ID: 1248780171, uploaded June 24, 2020). Available at: https://unsplash.com.

4.2 Investigate the relation between sleep and pain in PD further

Despite a growing number of scholars exploring the complex relation between PD and pain in PD, our knowledge of the issue is yet incomplete and we encourage further studies testing the specifics of the relation. Specifically, participants in our study emphasized that they experience a reinforcing association between sleep and pain in PD in accordance with findings from studies on sleep disturbances and other PD symptoms [38]. Also, multiple studies document that pain is a significant factor in contributing to sleep interference in other pain conditions, e.g., chronic neuropathic pain in spinal cord injury [39,40], which in combination with our study findings emphasizes the need for addressing sleep problems.

4.3 Optimize the dialogue between patients and healthcare professions regarding pain in PD

Many participants in our study described that health care professionals neglect their pain, and they yearned for more focus on pain in PD. Similar findings have been documented in studies of pain in PD [14] and other pain conditions, e.g., spinal cord injury neuropathic pain [40]. Our study suggests that patients and healthcare professionals may have different perceptions of PD symptoms and different expectations to pain treatment. This result supplements previous studies’ finding of PD patients’ perspectives on the most troublesome symptoms to frequently differ from clinicians’ perspectives [41]. Clinicians predominantly characterize PD by its motor symptoms and perceive non-motor symptoms as untreatable [22]; however, patients may perceive non-motor symptoms as having a greater impact as PD advances, and even in early PD stages, patients rank pain in the top 5 most troublesome symptoms [41]. Such discrepancy in perspectives between patient and practitioner has been proven to hamper treatment effectiveness [41]. Thus, a significant message from our study is to optimize the dialogue between patients and healthcare professions regarding pain in PD. Successful communication is significant for creating patient satisfaction, yet it is complicated in practice and often an issue in the healthcare system [42]. When optimizing the dialogue, we recommend healthcare professionals to consider our finding that some patients hide their pain due to fear of stigmatization, which is in accordance with previous studies [43,44]. Initiating a dialogue with these patients is highly important since self-stigmatization in PD is a determinant of quality of life [45] and can be a burden for caregivers [46].

4.4 Enhance patient centeredness in the treatment of pain in PD

Participants in our study frequently expressed satisfaction with PD treatment, yet they were dissatisfied with pain treatment. They were unsure of who is responsible for treatment of their pain; this is in accordance with previous literature [47]. In our study, patients wished for clarity regarding roles and responsibilities among professionals in pain treatment. Clarity can be optimized by implementing patient-centered treatment strategies in which healthcare professionals actively investigate and understand each patients’ needs and values [48]. Strategies include assessment of patient expectations to treatment outcome and aligning these with expectations of healthcare professionals. Implementing such strategies would be in accordance with literature suggesting patients with PD yearn for more patient centeredness in treatment [49], and with experts recommending healthcare systems to optimize patient centeredness in treatment of PD [49,50]. However, as healthcare systems worldwide are currently challenged by increasing complexity and decreasing resources [51], implementing these strategies in clinical practice can be timely and costly.

4.5 Assess self-medication

From this study, treatment of pain in PD appears insufficient. A high number of participants treated their pain via medication unsupervised by a healthcare professional. Self-medication included increasing doses of ordinated PD medication and taking over-the-counter pain killers. Similar results have been documented in studies of other pain conditions [39]. Self-medication is associated with major risks, e.g., delays in appropriate treatment and incorrect dosage [52]. In addition, unsupervised self-medication challenges monitoring adverse events. Also, the frequent use of pain killers among participants in our study relates to literature reporting pain killers to be the most frequently used pain treatment [3,9]. To optimize pain treatment in PD, we recommend healthcare systems to incorporate assessment of self-medication in standard treatment regimes.

4.6 Compare the effect of different kinds of non-pharmacological and non-invasive treatments

An important message from participants is their request for future studies comparing the effect of different kinds of non-pharmacological and non-invasive treatment of pain. Broadly, patients experienced low and/or temporary effect of alternative pain treatment, confirming existing literature on the topic [3]. Participants in our study experienced training as a most efficient pain treatment, which is in accordance with previous studies reporting physical activity as most effective, i.e., physiotherapy and rehabilitative therapy decrease musculoskeletal pain [3,9] and exercise can reduce pain [14]. We encourage future studies of exercise training to specify effects on different pain subtypes based on previous studies showing that PD treatments may have different effects in different types of PD-related pain.

4.7 Clinical relevance and future perspectives

This study opens new avenues for multiple steps to optimize assessment and treatment of pain in PD in clinical practice. First, as patients describe pain as related to PD while experienced health care professionals disagree, the specific relation should be investigated in each individual patient case. Second, patients in the study were satisfied with PD treatment, yet dissatisfied with treatment of pain in PD and yearning for dialogue with healthcare professionals in this regard. Thus, healthcare professionals can initiate a dialogue with patients on why satisfaction with general PD treatment is high and how to transfer this to treatment of pain in PD. Furthermore, in the dialogue, healthcare professionals can discuss self-management and other non-pharmacological treatment methods. Finally, participants in our study frequently treated their pain by use of medicine without supervision of healthcare professionals, and in this regard, we recommend integrating assessment of unsupervised self-medication into standard treatment regimes.

We encourage future studies exploring the topic from the perspective of healthcare professionals. Also, participants in our study expressed a need for studies comparing the effect of different non-pharmacological and non-invasive treatments. Future large-scale controlled studies are encouraged to compare the effect of different physical activities, and control for effects on different pain types.