Abstract

1. Introduction

The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”, identifying it as a leading cause of suffering and disability in the world [1,2,3]. Chronic pain (CP) was recognized by the European Federation of Pain (EFIC) as a pathology in 2001, whether isolated or accompanied by other disorders [4]. It is defined as pain that persists or recurs for longer than 3 months, associated with significant emotional distress or functional disability [2]. CP can be classified as primary CP (without an obvious cause) or secondary CP (as a symptom of an underlying pathology, including neuropathy, cancer, post-surgical, post-traumatic, orofacial, visceral, and musculoskeletal pain) [2].

The prevalence of CP is as high as 20% in the European adult population, while similar percentages can be found in the USA [5,6]. A Portuguese population-based study revealed that almost 37% of adults suffer from CP, making it a major public health issue [7]. The consequences of CP are vast, as they are both personal, economical, and societal, influencing absenteeism, social benefits, and early retirement costs. The annual cost of CP in Portugal amounts to EUR 5635.26 million; however, only 1% of Portuguese pain patients have access to specialized healthcare [8]. It has also been shown that, while patient access to care is somewhat restricted, when someone uses health services due to their pain, there is a propensity for overuse with no clinical gain [8]. Such findings make it pertinent to propose new intervention programs by bringing patients and healthcare professionals closer, empowering those who suffer, and maximizing the effective use of the available resources [7,8].

The creation of a CP support line (CPSL) can be one such program, making it possible to avoid some of the unjustified use of healthcare services (by providing patients with pain-preventing tools and self-management) and tackling major issues related to CP management, such as medication adherence (i.e., intaking the correct dosage of the right medicine in a timely manner and for the prescribed duration). Some pain support lines are functioning already, in countries such as Ireland, Canada, England, and Australia. Most were created by private organizations and operated by volunteers [9,10,11,12,13]. Even though this type of program seems to have a positive impact on patients with CP, with testimonies reinforcing the importance of human presence for those suffering, there is a lack of objective data on their effectiveness [9,14,15,16].

Using focus group methodology to gather an in-depth understanding of the perceptions and beliefs of patients with CP and healthcare professionals working in the field, we believe it to be possible to provide a truly objective ground for creating such a service. The focus group is characterized by a close interaction between the moderator and the group members and interactions between the participants themselves [17,18,19,20]. This methodology makes it possible to better understand the participants’ perceptions on the topic under discussion and is particularly useful in the context of healthcare research, as most health-related conditions depend on the social environment and context [18,19]. Focus groups have been widely used to gather knowledge regarding patients’ experiences with health services and healthcare providers’ attitudes and needs [19,21].

This study aimed to describe the perspectives of both patients with CP and healthcare professionals regarding the creation of a CPSL in Portugal. To our knowledge, this is the first time the feasibility of a CP support line has been studied and structured within a scientific approach. Focus groups followed a previously published protocol [22], allowing for the development of a support line based on the reality of those living with the disease. Gathered data will also provide insight into the potential impact of a CPSL.

2. Materials and Methods

The present study is part of a larger project titled “Creating a pain support line in Portugal: feasibility, development and impact” and reports the results of focus groups carried out with patients with CP and healthcare professionals working in the field. The main objective was to evaluate the feasibility of creating such a support line, according to the participants’ perspectives, beliefs, and expectations.

3. Results

In total, three focus group interviews were conducted. The majority of patients with CP were females (83%) and the same percentage were married. Fifty percent (50%) were unemployed and 33.3% had a university degree. Regarding the 10 healthcare professionals (n = 10): there was a nurse, an anesthesiologist, a stomatologist, a physical and rehabilitation medicine physician, and six family medicine physicians. The experience working with patients with CP ranged from 5 to 20 years.

After transcription, the data were coded, first inductively and then using the deductive method to confront the results and minimize bias. Four major themes emerged in both approaches and the three focus groups: (1) support available for patients, (2) perceived patients’ difficulties, (3) perceived patients’ necessities, and (4) creation of a chronic pain support line. The major theme “Perceived patients’ difficulties” was discussed to a lesser extent in the healthcare professionals’ groups. Descriptions can be found in Table 1.

As for the minor themes, some appeared only with deductive coding, reinforcing their less significant role. These themes are related mainly to two topics: the daily living of patients and the importance of treatment adherence on pain control. This last theme was only discussed in the healthcare groups but its relevance for pain management and its dependency on the doctor–patient relationship and proper communication was vehemently reinforced.

4. Discussion

This study describes the perspectives, needs, and difficulties that both patients with chronic pain and healthcare professionals experience on a daily basis. It also shows that creating a chronic pain support line for patients is considered valuable, as long as such a line operates under well-defined guidelines.

When coding focus group data, four major themes emerged. There was no difference in major themes when comparing patients’ and healthcare professionals’ focus groups. The fact that coding was made both inductively and deductively and that inductive coding was applied first strengthens the validity of collected data and increases the reliability of the findings, as bias was significantly reduced.

By analyzing the first main theme, Support available for patients, one can find interesting distinctions between patients’ and professionals’ perspectives of CP support. Firstly, both groups agreed that Hospital Pain Units are the best available support system for patients with CP. This is somewhat expected, as these units have teams specialized in dealing with CP; nevertheless, healthcare professionals highlighted that these units have very long waiting lists. The second most mentioned support system was family physicians. Here, opinions start to differ: healthcare professionals assume that, besides being responsible for most Portuguese patients with CP, FPs are mostly successful in managing their pain. This notion is corroborated by a previous study, which stated that 85% of Portuguese patients with CP are managed by FPs [38]. However, patients with CP have less trust in FPs’ ability to manage their pain, stating that they do not have the necessary knowledge about CP. Patients’ perspective is more in line with what has been demonstrated in previous studies [39,40]. Their lack of trust in their FPs leads them to resort to emergency services when experiencing pain exacerbations, even though they complain that these too are unsatisfactory support services. This is unsurprising since emergency services are designed to manage acute and at times life-threatening situations and CP patients’ needs are very different, so much so that healthcare professionals did not even consider emergency services to be a type of support for CP management. These findings show that patients often have misconceptions regarding the role of emergency services, which leads to their overuse, as the previous literature has described [16,38]. Another relevant inconsistency between patients’ and professionals’ perspectives concerns available information about CP and its management tools: patients refer to it as insufficient and difficult to access, whereas healthcare professionals believe the resources provided are enough. This may indicate an important gap in communication.

The second main theme discussed, Perceived patients’ difficulties, understandably had a greater emotional significance in the patient group. This is aligned with the Self-Regulation Model of Leventhal: when confronted with illness, people tend to process the information emotionally and cognitively to give it meaning and then cope with it [41]. As everyone has a unique illness representation, it is not surprising that a lack of understanding is perceived as a major issue, with patients revealing that they deal with other specific struggles in their everyday life that professionals failed to mention. A frequently discussed problem was the inhibition patients show in asking for help. This is a complex issue that may be partially explained by cultural beliefs regarding pain [9,39,40]. Misjudgment and dismissal of complaints, with consequent diagnosis delays, was another obstacle identified. This seems to be more frequent among women, who highlighted that male doctors are more prone to interpret their symptoms as secondary to psychiatric pathology [39,40]. This finding seems to suggest that there is a gender bias in CP management. Although this bias is not new, further studies are needed to clarify the motives behind these perceptions [40]. For different reasons, men also mentioned that it would be important to them to be able to choose the gender of the person they interact with. In their case, the main reason for this is that they feel there are sensitive themes they are not comfortable discussing with someone of the opposite sex, such as sexual dysfunction secondary to chronic pain. Finally, patients are also assumed to experience some reluctance in accepting their diagnosis once it is made. This may seem like a somewhat peculiar and even paradoxical notion at first, given the fact that the same patients complained about the excessive time to diagnosis; however, when one takes into account the fact that CP is a serious, often permanent, and difficult to manage diagnosis, it is easier to understand their reluctance.

Regarding the third major theme, Perceived patients’ necessities, there was greater unanimity. Both patients and healthcare professionals identified emotional and psychological support as the main necessity for those who suffer from CP. This seems to be linked to the misunderstanding of patients’ feelings, as well as to the burden of the disease itself [39,40,42]. Similarly, both groups mentioned the need for reliable and scientific information, which highlights the importance of adequate counseling and coping mechanisms: these can greatly help patients self-manage, besides aiding them in preventing their pain from becoming worse [16,39,43]. Patients also mentioned the importance of having support with no time limitations and good communication skills, ideas that have been widely discussed in previous studies [43,44]. Patients and healthcare professionals also noted the importance of being able to be in contact with people who have experienced similar situations and hardship.

Lastly, regarding the fourth main theme, Creation of a CPSL, there was also a significant alignment of ideas. Both groups agreed that those operating a CPSL must have proper training and experience in CP in particular [3]. Likewise, pharmacological knowledge is essential to help avoid mistakes and answer frequent questions. The possibility of creating contact points between patients and their peers or CP patients’ associations was also mentioned as an interesting service for a CPSL to provide; the importance of this approach has been discussed in previous studies [9,42,43]. Choosing the gender of the operator and making video calls were also mentioned as very significant positives from patients’ perspectives. The importance of video calls has become particularly relevant in recent years [45]. As for what to avoid, it was clear that the line must not make therapeutic interventions and must never act as a substitute for the doctor or nurse. Healthcare professionals added that algorithms are not reasonable in a support line that aims to support the experience of the disease and not the disease itself, as they would render the approach mechanical and almost exclusively directed at medical decisions, something that should be avoided, given the aim of such a project. Its purpose should be to complement already available support systems, with the potential to relieve the burden of the Pain Units and promote equality in CP support access. Both patients and professionals agreed on the feasibility of a CPSL. Professionals considered it a good system to relieve their work overload by making emotional and psychological support easily accessible to all patients. This idea has emerged in a previous study [16].

Despite the volume of data collected, participants rarely discussed medication adherence. It was only addressed by professionals after the facilitator mentioned it. Although this is an important factor in CP mismanagement, patients do not regard treatment adherence as relevant; as for healthcare professionals, they considered the assessment of medication adherence to be of major significance and openly assumed its dependency on the quality of the communication established with the patient, as described in previous studies [8].

This study has some limitations. The most obvious and major limitation was the sampling method; participants’ characteristics may be very similar regardless of their number, and thus the sample may not comprehensively represent the population being studied [34,46]. In this study, there were some societal groups that were underrepresented in the patients’ group: people from rural areas, males, and people with less than a secondary education. Nonetheless, the group included elements ranging from very talkative to very quiet, as well as people with diverging opinions on several topics, which enhances sample representativity. Regarding the study’s methodology, some aspects should be noted. Ideally, focus group meetings would have been conducted in person. This would allow us to better identify alternative sources of information such as participants’ body language and posture. However, it was necessary to opt for an entirely online approach to guarantee participants’ safety during the COVID-19 pandemic and more flexibility to enhance participation during post-pandemic restrictions.

The dropout rate was 14.3% for patients with CP, which is a relatively low number, compared to previous studies [47]. The higher participation rate might be explained by the logistical characteristics of online focus groups: they are easier to attend to and scheduling conflicts are less of a restriction [47]. Healthcare professionals’ numbers are compliant with the numbers reported in previous focus group studies, which accounted for a 52% dropout rate [47]. These findings confirm that a complete online approach to focus group methodology is valid and has the potential to enable research projects that would otherwise be impossible to undertake.

Despite these limitations, our findings provide insight into how receptive stakeholders are to the creation of a CPSL and how comprehensively it may respond to their needs.

To the authors’ knowledge, this is the first study supporting the development of a CPSL from a scientific standpoint; the project has the potential to have a positive impact on access equality and enhancement of quality of life for all patients with CP, while also contributing to more efficient use of healthcare services and healthcare professionals’ wellbeing.

5. Conclusions

Overall, the present study identified similar perceived needs between patients and professionals. However, two themes marked a distinct perception among the groups: gender bias regarding CP diagnosis and management (unidentified by healthcare professionals and not anticipated by researchers) and the need for more comprehensive health education among the Portuguese population, in order to prevent the overuse of emergency services associated with CP. Furthermore, bettering communication standards between patients and healthcare professionals also emerged as being of paramount importance. It also revealed that the creation of a CPSL is welcomed by both patients and healthcare professionals, as long as its development is accomplished in accordance with the identified needs and in close collaboration with all implied stakeholders. Both groups were also able to anticipate major difficulties in attaining a 24h support line, such us staff requirements and training needs, as well as the significance of the costs implicated in operating this type of support system.

Acknowledgments

Funding Statement

This research was supported by Cátedra de Medicina da Dor at the Faculty of Medicine of University of Porto.

Author Contributions

Conceptualization, M.C. and R.S.; methodology, M.C., S.P. and R.S. formal analysis, M.C., S.P. and M.I.D.; investigation, M.C., S.P., M.I.D., P.A., C.C. and R.S.; data curation, M.C., S.P. and C.C.; writing—original draft preparation, M.C., M.I.D. and P.A.; writing—review and editing, M.C., S.P. and R.S.; supervision, R.S.; project administration, R.S.; funding acquisition, R.S. All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement

The study and its protocol were conducted in accordance with the Declaration of Helsinki and approved by the Ethics Committee of Centro Hospitalar Universitário de São João (protocol code 109-21, 19 March 2021).

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author, MC, upon reasonable request.

Conflicts of Interest

The authors declare no conflicts of interest.

Footnotes

References