Completion of the PainData questionnaire – A qualitative study of patients’ experiences

2.1 Study design

This study adopted a descriptive qualitative approach, inspired by Kvale and is reported in accordance with the COREQ-checklist [6,7]. Individual, semi-structured interviews were used to collect data from patients associated with the Interdisciplinary Pain Centre, HGH, and familiar with the PDq (having seen the questionnaire in their appointment letter in e-Boks, and partially completed, or fully completed the questionnaire).

2.2 The PDq

Patients are invited to complete the PDq at three time points: before their initial pain clinic visit (baseline), after completion of their treatment (follow-up), and again 12 months post completed treatment. The PDq covers three main areas: pain, mental health, and physical health. Patients are informed that it takes approximately 45 min to complete the PDq, and they can log in multiple times if they do not wish to complete the entire form at once. Upon completion of the PDq, a summary report of each patient’s responses is generated. Clinicians can opt to review the patient’s summary report before consultations [4].

2.3 Interview guide

An interview guide with the aim of collecting accounts of barriers experienced by patients with chronic non-malignant pain was developed by the authors and tested in two pilot interviews before the start of the project. No changes were made based on the pilot interviews. The topics covered in the interview guide were (1) the general experience of completing the questionnaire, (2) any challenges encountered in completing the questionnaire, (3) comments regarding the invitation letter, and (4) suggestions for any changes/additions to the PDq. During the data collection, some issues emerged that we wished to explore in subsequent interviews, specifically patients’ reflections on the pain scales used in the PDq. Therefore, sub-questions regarding this were added to the original interview guide. These additions are marked in the attached interview guide (Supplementary material).

2.4 Sampling

Invitations were extended to all patients familiar with the PDq at the Interdisciplinary Pain Centre, HGH. Proficiency in Danish was a requirement. The project initially planned to employ a purposive sampling technique, targeting patients recently admitted to the pain clinic. However, due to recruitment challenges, the strategy was adapted to convenience sampling, extending the invitation to all patients, both newly admitted and those with a longer history at the clinic [8,9]. All patients provided consent following standard procedures established by the Research Ethics Committee system.

2.5 Data collection

Individual, semi-structured interviews were conducted either in person at The Interdisciplinary Pain Centre, HGH, or via telephone. These options were given to ensure accessibility and flexibility for this fragile patient group, as advised by staff. Participants were informed that they would be interviewed by a medical student. Interviews were scheduled immediately before or after participants’ planned consultations to minimize unnecessary travel. Interviews were audio-recorded and transcribed verbatim and supplemental field notes were taken by the first author, R.A.E.

2.6 Data analysis

Interviews were analysed consecutively using inductive content analysis as described by Elo and Kyngäs [10]. The first author (R.A.E.) conducted the initial coding of the data. Further analysis of the data and identification of categories was done collaboratively in the author group. The analysis software NVivo was used to organize and manage the data [11]. Data analysis was finalized December 3, 2023.

3.1 Category 1: Perceived barriers to completing the questionnaire

Participants experienced several barriers to completing the questionnaire. They described challenges related to answering the lengthy questionnaire due to factors such as worsening pain, difficulty concentrating, and stress, which in some cases led to a need for assistance. Lack of assistance resulted in giving up along the way.

“I constantly felt like I had forms to fill out, so it was extra hard. I can…, I can…, I don’t know if it’s because in my old job, I spent a lot of time at a PC, but if I have to sit at a PC, there’s only short moment, and then it affects me, I get tension headaches, and in addition to that, there are nerve pains, um, in my face.” (INT-8, female, 57 years old, pain duration > 10 years)

“Well, for me, it was difficult electronically, because I have shoulder-neck problems due to my work accident, which also means that I have problems with sitting and writing in front of a computer. So, the actual typing and such, I got help from my daughter.” (INT-3, female, 64 years old, pain duration > 10 years)

For many participants, completing the questionnaire or performing any similar task posed a significant burden. Their pre-existing struggles with ordinary daily activities often interfered with their ability to comprehend or focus on completing the PDq as instructed by the pain clinic. Conversations with participants revealed that these difficulties mirrored the broader challenges they encountered in their everyday lives due to their chronic pain conditions.

Moreover, some participants noted the necessity of taking frequent breaks in order to complete the questionnaire.

INT-4: “I did it over several times.” “…yeah, I think that was really a lot of questions.” R.A.E: “Was it hard to concentrate on it?” INT-4: “Yes, I think so.” “It was way too long. Way too long! It has…, it has to…, it has to be, I think as a questionnaire, it has to be quick, it has to be maximum 10 minutes. And then you can, maybe you could elaborate on some things.” (INT-4, female, 68 years old, pain duration, 1-3 years)

The PDq, distributed prior to the initiation of treatment, required participants to reflect on and provide insight into their condition. However, several participants described finding this task challenging, as they had not yet received guidance regarding their chronic non-malignant pain. This lack of prior understanding made it difficult for the participants to answer the questions in a comprehensive manner.

R.A.E.: “…was it difficult for you?” INT-6: “Uh. In some places, I think. Because it’s about needing to know exactly how you are yourself.” (INT-6, man 32 years old, pain duration 2-3 years)

3.2 Category 2: Limited opportunities to nuance one’s answers

Participants found the predefined 0-to-10 response options in the PDq challenging, as they struggled with the lack of opportunity to elaborate on their subjective and variable pain experiences. They felt confined by the closed answer options. A combination of a questionnaire and follow-up dialogue might have made it easier to provide more nuanced responses, some participants suggested:

“…especially when it comes to the pain spectrum, if you can put it that way, I could have had a damn good day the day before, and then I’m just in hell the day after. So, it’s very variable, and there’s something about going in and choosing from 8-10 or from 0-10…” (INT-5, female, 75 years old, pain duration > 10 years)

“Uh, yes, in my case, yes.” “…I think maybe it’s easier. Because sometimes it’s easier to sort of explain or describe when you are asked, uh…, what about this situation, uh. or something like that, right? Because there were some questions that I found difficult, you know.” (INT-3, female, 64 years old, pain duration > 10 years)

3.3 Category 3: Insufficient patient information about the purpose of the questionnaire

Participants felt that the information provided about the purpose of the PDq was insufficient. In one case a patient initially chose not to answer the questionnaire, but after being informed in person at the clinic, he changed his mind. He addressed that better information could potentially lead to a higher response rate:

“Because, as I said, I don’t…. I don’t answer questionnaires, but I did that day. So, it made a lot of sense, the way I was explained what it was about.” (INT-10, male, 26 years old, pain duration 3-5 years)

“However, it might be important to improve how information is provided by general practitioners, when they make referrals, or to whoever is handling the referrals. It would help if patients were informed in advance that they would receive something like this when they get there, so they have a better understanding beforehand, rather than just receiving it when they get the appointment letter.” (INT-13, woman 34 years old, pain duration 1-3 years)

Contrary to their expectations, participants did not experience that the data they provided in the PDq were considered or incorporated in consultations or treatment decisions in the pain clinic. This gave them a sense of having dutifully filled out the PDq solely for the sake of the health staff rather than for the sake mutual communication and decision-making during consultations and treatment.

“But then it’s like, you expect not to have to answer the same questions from the doctor when you come here. But you still must. And then you think, what’s the point?” (INT-11, female, 58 years old, pain duration 3-5 years)

“Because it was, as far as I could see, a relatively extensive questionnaire, it wasn’t just something where you ticked three boxes and then sent it in. I would say, if you’re asked to invest some time, I also think it’s important that you get the response that it’s being used for something.” (Int-15, male, 45 years old, pain duration 15 years)

3.4 Category 4: The PDq promotes deeper understanding of pain

Participants emphasized that completing the PDq nudged reflections on depressive thoughts, suicidal ideation, and the concept of living with an invisible disability. They found the PDq, which incorporates a multidisciplinary view of the impact of chronic non-malignant pain (referred to as the “pain onion”), to be particularly meaningful and a positive introduction to the treatment process.

Recognizing chronic non-malignant pain as an invisible disability was highly significant to participants, underscoring its importance in their treatment experience. They also noted that chronic non-malignant pain had a significant effect on mental health, emphasizing the need for both the questionnaire and the treatment process to acknowledge this impact:

“For me, coming to a multidisciplinary pain clinic means considering the whole picture. I believe that everything matters here. At the psychiatric facility I attended, the focus was solely on psychiatric issues, and there was hardly any consideration of physical ailments. In contrast, here everything is seen as important. I also bring my mental health issues with me because I’ve been at a point where I nearly took my own life due to the pain. It’s crucial for them to understand that here, and it’s also important for them to know that I don’t have the energy for daily exercise. So, to me, it’s the entire scope that matters.” (INT-13, woman 34 years old, pain duration 1-3 years)

4.1 Perceived barriers to completing the questionnaire

The study revealed several barriers that hindered patients from effectively engaging with the PDq. A significant issue identified was survey fatigue and lack of information, preparation and practical assistance. This aligns with previous research suggesting that multiple survey requests can overwhelm patients, reducing their willingness to participate [1,13,14]. The study highlights the importance of providing clear instructions and motivational explanations to mitigate this issue, ultimately improving response rates. Clinicians have the autonomy to explore strategies for enhancing response rates, and these straightforward recommendations may be considered as part of their approach.

Additionally, the study illustrates how seemingly innocuous activities, such as completing a questionnaire, can exacerbate pain in this patient population. This finding underscores the need for practical assistance during questionnaire completion, as even minor tasks can contribute to patient discomfort. While completing the PDq with help may introduce bias [1], exploring potential benefits might be relevant for those responsible for the database, as it could enhance participation without compromising patient well-being.

4.2 Insufficient patient information about the questionnaire’s purpose

Many participants were unaware of the PDq’s role in their treatment, leading to disengagement. Clearer communication from healthcare providers about the importance of the PDq and educating patients on how their responses may facilitate shared decision-making and improved quality of care could foster trust, motivate, and potentially enhance response rates [2]. Participants emphasized the value of understanding how their input directly influenced their treatment.

A recurring issue was the lack of integration of PDq data into clinical consultations. Patients expressed frustration that their efforts to complete the questionnaire did not lead to meaningful discussions with their healthcare providers. By improving the visibility and use of patient-provided data during consultations, clinics could increase patient engagement and promote more consistent participation in future data collection [2]. Furthermore, establishing clear protocols for addressing sensitive responses, such as those related to suicidal ideation, would improve patient safety and highlight the PDq’s significance.

These barriers, however, are not inherent to the PDq or its design, but rather reflect the challenges in integrating the questionnaire into routine clinic practices. The absence of established protocols for using the PDq during consultations indicates that pain clinics have not yet fully incorporated the tool into their daily operations. While each clinic could establish its own individual protocols, another approach would involve database administrators providing healthcare providers with clear guidelines for data collection. This would help maintain uniformity and prevent disparities in response rates between clinics.

4.3 Limited opportunities for nuanced responses

Participants expressed frustration with barriers such as closed response options, lack of elaboration opportunities, and inadequate patient guidance. Predefined response options, particularly concerning pain, could not embrace the participants’ individualized and often fluctuating pain perceptions, potentially compromising data accuracy. Standardized scales may yield divergent interpretations, as the pain intensity of “10” varies widely among individuals [1].

Tools like visual analogue scale (VAS), numeric pan rating scale (NPRS) and verbal rating scale (VRS) have limitations in capturing the multidimensional nature of pain, which is influenced by psychological, social, and physical factors. The VRS, frequently used in the PDq, is simple and easy to understand. Patients often prefer it over the NPRS and VAS, and its simplicity ensures high compliance [15]. However, as described by the participants, there is a tendency to simply agree with items regardless of their content, as patients may struggle to find a caption that accurately reflects their perceived pain intensity.

Incorporating open-ended questions or supplementing the PDq with a follow-up dialogue may enable patients to articulate their challenges more comprehensively, which would be particularly useful in clinical settings. However, in research, open-ended answers are difficult to analyse systematically and may lack consistency, making it hard to compare data across large samples [16].

4.4 PDq promotes deeper understanding of pain

Completing the PDq prompted participants to reflect on depressive thoughts, suicidal ideation, and the concept of chronic pain as an invisible disability. The PDq’s multidisciplinary approach provided a meaningful introduction to treatment by addressing both physical and mental health impacts of chronic non-malignant pain.

Recognizing chronic non-malignant pain as an invisible disability was particularly significant for participants, emphasizing the value of tools like the PDq in fostering self-reflection and improving awareness of pain’s complexities. These findings align with the growing recognition of the psychological dimensions of chronic illness and the need to address mental health alongside physical symptoms in treatment strategies [17].

4.5 Limitations

The qualitative approach provided meaningful insights into patient experiences, but several limitations must be acknowledged. The interviews were notably shorter than anticipated, with a median duration of 11 min (range: 6:11–17:40). This brevity primarily stemmed from the fragile state of the participants, who faced significant physical and cognitive challenges due to their chronic non-malignant pain condition. Fatigue, difficulty concentrating, and pain exacerbation during or after clinical consultations often limited their ability to engage in extended discussions.

Staff’s concerns about the potential negative impact of interviews on this vulnerable group further shaped the study’s cautious design. To minimize burden, interviews were conducted in person and scheduled alongside planned clinical visits, reducing unnecessary travel but occasionally leaving participants fatigued after lengthy consultations. In hindsight, a design ensuring participants were at their most energetic – rather than at the end of a lengthy consultation – would have been ideal for gathering more in-depth responses. While this concern reflects the staff’s genuine care for patients, it may have led to misleading results and ultimately not served the patients’ best interests in the context of this study.

Despite these constraints, the shorter interviews yielded rich and meaningful insights into patients’ experiences with the PDq. Pain duration varied significantly among participants, which added depth to the findings by highlighting issues that remained prominent in patients’ memories over time. Notably, a third of the informants reported a pain duration of 1–3 years, a subgroup less representative of the general patient population in pain clinics. However, their perspectives were also valuable. These patients, being newly diagnosed and untreated, faced unique challenges in completing the questionnaire. Their insights were especially relevant, given the study’s focus on the baseline questionnaire, and provided a deeper understanding of patient experiences at early stages of care.

4.6 Implications for practice

In summary, participants identified several challenges in completing the PDq, including physical discomfort, cognitive fatigue, the questionnaire’s design, and technical issues. These obstacles align with existing research, which highlights respondent burden as a key limitation of PROMs [2].

This study provides several practical recommendations for administrators. The 45 min completion time for the PDq was a significant concern, with many participants reporting it took over 2 h to finish. This suggests a need for the questionnaire’s redesign or segmentation. Additionally, involving patients in the development of PROMs is essential to ensure that these tools genuinely reflect patient experiences and concerns. A review of PROM development practices reveals that the level of patient involvement varies considerably, from minimal consultation to active collaboration throughout the process [16]. Greater patient involvement could enhance the relevance and validity of the PDq, leading to more effective clinical assessments and providing valuable data for future research. Furthermore, clinics can enhance response rates by reviewing the entire process at their end, ensuring patients are well-informed, that the invitation letter is effective, and that patients’ responses are discussed with patients during consultations.

Despite the challenges, 11 out of 15 informants successfully completed the questionnaire, while only four were unable to finish. The reported response rate of 67% only reflects those who did not complete the questionnaire and does not account for those who started but stopped due to the barriers mentioned earlier. On a national level, the response rate is relatively high, indicating that the PDq’s design works for most users. Therefore, the pain clinic at HGH, should focus on what can be done at the clinic level to further enhance participation.

Future research should develop and test interventions to address technical issues, questionnaire design, physical discomfort, and cognitive fatigue, with potential applicability to other chronic conditions. By continuously refining PROMs and integrating them into clinical practice, we can enhance the quality of care for individuals with chronic non-malignant pain and other long-term health challenges.