Home Medicine Exploring patient experiences of a pain management centre: A qualitative study
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Exploring patient experiences of a pain management centre: A qualitative study

  • Manasi M. Mittinty EMAIL logo , John Lee , Amanda C. de C. Williams and Natasha Curran
Published/Copyright: October 1, 2017
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Scandinavian Journal of Pain
From the journal Scandinavian Journal of Pain Volume 17 Issue 1

Abstract

Background and aims

To improve care and management of patients with chronic pain it is important to understand patients’ experiences of treatment, and of the people and the environment involved. As chronic pain patients often have long relationships with medical clinics and pain management centres, the team and team interactions with the patients could impact the treatment outcome. The aim of this study was to elicit as honest as possible an account of chronic pain patients’ experiences associated with their care and feed this information back to the clinical team as motivation for improvement.

Methods

The research was conducted at a large hospital-based pain management centre. One hundred consecutive patients aged 18 years and above, who had visited the centre at least once before, were invited to participate. Seventy patients agreed and were asked to write a letter, as if to a friend, describing the centre. On completion of the study, all letters were transcribed into NVivo software and a thematic analysis performed.

Results

Six key themes were identified: (i) staff attitude and behaviour; (ii) interactions with the physician; (iii) importance of a dedicated pain management centre; (iv) personalized care; (v) benefits beyond pain control; (vi) recommending the pain management centre.

Conclusion

The findings suggest that the main reasons that patients recommended the centre were: (i) support and validation provided by the staff; (ii) provision of detailed information about the treatment choices available; (iii) personalized management plan and strategies to improve overall quality of life alongside pain control. None of the letters criticized the care provided, but eight of seventy reported long waiting times for the first appointment as a problem.

Implications

Patient views are central to improving care. However, satisfaction questionnaires or checklists can be intimidating, and restrictive in their content, not allowing patients to offer spontaneous feedback. We used a novel approach of writing a letter to a friend, which encouraged reporting of uncensored views. The results of the study have encouraged the clinical team to pursue their patient management strategies and work to reduce the waiting time for a first appointment.

Keywords: Patient experiences; Pain management; Pain centre; Qualitative study; Service-user feedback; Clinical audit

1 Introduction

Pain, defined as “an unpleasant sensory and emotional experience described in terms of actual or potential tissue damage” [1], is an emerging health problem globally [2]. An estimated 19% of the European population experiences chronic pain [3]. It is increasingly necessary to explore ways of improving patient care [4]. One of the recognized barriers to providing optimal care for patients with chronic pain is a lack of understanding about what patients expect from their management [5]. To improve this, patients’ expectations and experience must be sampled, not only of treatment but also of the people and environment involved in treatment.

An important but understudied area is the influence on patients of the therapeutic team and the care provided. Considering their long relationships with medical clinics and pain management centres, it is quite possible that patients’ interactions with the therapeutic team and experiences is represented in how they receive and respond to therapeutic interventions, and that in turn affects treatment outcomes. It is likely that patients’ expectations differ from what is offered in clinics [6] although neither party may be aware of this [7]. Establishing a trusting relationship with the healthcare team involved may be an important part of treatment [8,9], particularly for patient self-management. Although effectiveness of treatments and overall patient satisfaction or adherence has been extensively studied [10, 11, 12], little is known about patients’ specific experiences of pain centres.

Integrating patient views is regarded as vital to improving healthcare services [13,14]. Hence, obtaining those views in a way that is less restrictive than questions posed by treatment staff directly about care, should elicit a richer account from patients about their experience. Sharing these accounts with the clinical team provides feedback about the delivery of care to inform service development and management. In addition, although this pain centre has structured feedback about its cognitive behaviourally based pain management, there was little information about how patients appreciated the routine appointments.

2 Methods

2.1 Procedure

We asked patients to write a letter to a friend about the pain management centre, as an alternative to focus groups or interviews, because direct feedback to the treatment team or to a researcher is likely to inhibit criticism and to test letter-writing as a relatively simple yet open feedback method. This is a novel approach but based on sound psychological principles to elicit more honest answers that may also promote physical and psychological health of the participants [15]. It was designed to allow collection of rich data on patient experience without constraints of questionnaires or checklists, to build on existing knowledge of chronic pain patients’ clinic experiences [16]. Patients attending the pain management centre for a second or subsequent appointment (to ensure there was sufficient experience to write about) were invited to write a letter to a friend on a single A4 sheet of paper, using the instructions: Imagine a friend asked you the question, ‘What is the pain management centre like?’, and the letter started “Dear Friend”. Participation was completely anonymous and patients were assured that their response was independent from their treatment. Patients deposited their completed letters in a box at the pain management centre reception.

2.2 Participants

To be invited to take part, patients had to be at least 18 years old, and have attended the pain management centre at least once before. One hundred consecutive patients meeting these criteria were approached, with an explanation of the study and an assurance of complete anonymity and independence from their treatment.

2.3 Data collection and analysis

All letters were transcribed into NVivo software [17]. NVivo software was used largely for categorizing the data collected into different codes and then themes. The steps described by Braun and Clarke [18] for conducting thematic analysis were followed. Thematic synthesis was chosen, as it is a tried and tested method in qualitative research [19], allowing identification of common themes across data sets, while preserving transparency between conclusions and research questions [19].

We adopted a phenomenological approach in our analysis to examine patients’ views and opinions and the meanings they attached to their experiences at the centre [20]. Transcribed data were read several times and similar concepts grouped together and assigned a code. Themes were developed by combining group of codes with similar meaning. This was done independently by two researchers who then compared and discussed their findings, following which the final themes were selected collectively by the team after several iterations.

3 Results

Seventy patients participated in the study; thirty declined. Reasons for declining included difficulties reading, writing or speaking English; lack of confidence in answering our question; and lack of time. Six key themes were identified: staff attitudes and behaviour; interactions with the doctor; implications of pain management centre being multidisciplinary; personalized care; benefits beyond pain control; and recommending the pain management centre. These are described below.

3.1 Theme 1: staff attitude and behaviour

Forty-two of the 70 letters (61%) described pain management centre staff attitudes and behaviour towards patients: staff were described as friendly, kind and helpful. Many patients reported that staff made them feel very comfortable, making their visit to the centre a positive experience.

“Everyone there is very kind and helpful”

“The personnel are so helpful and this puts you at ease straight away”

3.2 Theme 2: interactions with the doctor

Many letters described interactions with the treating doctor. Most reported receiving thorough attention, and described a high level of satisfaction about sufficient consultation time with the doctor, making them feel validated and heard. Patients compared pain management centre consultation length with other hospital outpatient and GP consultations, which were reported as short, leaving the patient feeling unheard and rushed.

“One of the most helpful aspects is the amount of time the staff allocate. You never get the feeling of being rushed through an appointment which is often the case with hospital consultants and GPs”

“They don’t rush you and actually listen to you”

A second element of the consultation described was that the doctor provided a detailed explanation and information about pain, and answered patients’ questions in a way that reassured them.

“Takes time to listen to me and explain every detail and are good at explaining my condition to me”

“I was very worried at first, but meeting the doctor and the explanations he gave me was reassuring.”

3.3 Theme 3: importance of a dedicated centre for pain management

Patients described the pain management centre as “an oasis” for people with pain, where they were provided with positive and realistic management strategies within a holistic and supportive approach during and after treatment. Patients reported that unlike many other hospital departments or clinics, staff at the pain management centre had deeper knowledge about pain, showed greater acceptance of patients experiencing pain, and provided better care.

Some patients also reported that the pain management centre had not only helped them manage pain but also helped them to cope with despair and depression and improve their overall quality of life.

“You will find the staff at the clinic different - they meet people in pain and accept that it exists.”

“It makes huge difference attending a specialist unit because the focus is so specific and the knowledge and understanding of the staff so helpful.”

3.4 Theme 4: personalized care

Many patients commented on receiving personalized care and management, in particular being offered multiple options for treating their pain (including oral medication, injections, acupuncture, and psychological help), with detailed information about the treatments and possible side-effects, so that they could make an informed choice. For those patients with more than one type of pain, different treatment options might be offered for each condition.

“Not all treatments are suitable for all patients so the consultant works with the patient to develop a maintenance program using the treatments that work for them by means of a holistic approach”

“The pain management centre look at you and your pain as a whole”

3.5 Theme 5: benefits beyond pain control

A majority of the patients described positive change to their lives following attendance. Sixty-six participating patients reported improvement in their condition following treatment at the pain management centre, primarily alleviation of pain symptoms, but also other benefits such as increased physical functioning, better mental health, decreased reliance on drugs, and improved ability to work and quality of life.

“It has helped me live my life, coping with the pain, running a house, looking after a child of two and working part time”

“I know that without any doubt that this pain management treatment has not only saved me from a breakdown but also given me a much better quality of life”

3.6 Theme 6: recommending the pain management centre

Sixty-six of the 70 patients who participated specifically recommended the pain management centre to the friend to whom the letter was addressed:

“I can only hope you are referred to the pain clinic at Queen Square as I do not think you could be in better hands.”

“I really recommend this centre and am thankful to everyone who helped in my care.”

4 Discussion

The aim of this study was to understand how patients evaluated their treatment at the pain management centre in as honest a way as possible in order that this be fed back to the clinical team.

We identified six key themes. The first two, staff attitude and behaviour, and interactions with the physician, demonstrate the importance for patients of their interactions with the centre staff and physician. Feeling heard, believed, and the pain taken seriously were central to this, consistent with various qualitative studies of people with chronic pain in various other medical settings where these experiences have been lacking [21,22]. This finding should be seen as an extension of the ‘patient-provider relationship’ [23], in which staff attitude and behaviour towards the patients can make patients feel supported, validated and comfortable, which is likely to improve treatment adherence and possibly treatment outcome.

In two further themes, importance of a dedicated pain management centre, and personalized care patients documented high satisfaction levels with the provision of a broad range of treatment options, highlighting in particular the range of treatment options besides pharmacotherapy, the detailed information provided about the options and involvement in their management plans, and care personalized to their needs and lifestyle, helping them to manage their symptoms and improve their function in everyday life.

Those who reported on outcome of treatment, in benefits beyond pain control, described a wide range of outcomes, consistent with patient reported outcomes, particularly improved quality of life, less reliance on drugs, and better mood that may go beyond usual clinical concerns [4,24,25].

Overall, whether they had received treatment or were at an early stage of assessment and treatment decisions, patients strongly recommended the pain management centre to their friends. Although none of the letters offered any criticism of care itself, the long waiting times for the first appointment were highlighted as a problem in eight letters of the 70.

The method of this study has some limitations. The design of the study did not allow us to ascertain whether some of the 30% who declined participation did so because they were dissatisfied or critical of their treatment or of the pain management centre staff, and because of anonymity, we cannot explore any demographic differences between those who agreed and those who declined. This limits generalization from our data. A further limitation is that themes were not crosschecked with participants for accuracy of interpretation of their experiences, also due to anonymity. Overall, we elicited little criticism, except of the waiting time, which was a shortcoming of the hospital system rather than of the pain centre in particular. A major strength of this study is its use of a freehand, confidential and anonymous method for patients to give their opinions.

5 Conclusion

To our knowledge, this is the first qualitative study to explore patients’ views of a pain management service. The findings from the thematic analysis suggest that patients value each of the features of support and validation provided by the staff and physicians, provision of detailed information about the treatment choices available, personalized management with a focus on overall quality of life, in addition to pain control, and that for the large majority, this led them to recommend the pain centre without reservations to a friend. This underlies and validates the resources employed in delivering care to patients with long-term pain in three major areas: the time allocated for appointments, the attitudes of the staff, and the quality of the exchange between the parties.

6 Implications

Incorporating patients’ perspectives is central to improving care. However, satisfaction questionnaires are limited in the information they provide, and it is important to try to elicit from patients a fuller account of their experience. This novel approach of writing a letter to a friend not only provides patient the freedom to report the full range of their experiences but the process of putting words to their feelings can benefit their psychological and physical health. In this study, the quality of care is highly valued but there may be a trade-off between the length of a consultation and the time to a first appointment, which warrants research.

Level 4, AHMS Building, 57 North Terrace, Adelaide 5006, Australia

  1. Ethical issues: The study was conducted at University College London Hospital’s pain management centre as a patient experience survey (a form of clinical audit) for which no ethics approval was required [26].

  2. Conflict of interest

    Conflict of interest statement: All the authors declare that they have no conflict of interest.

Acknowledgements

We wish to thank all the patients who participated in our study.

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Received: 2017-09-19
Accepted: 2017-09-21
Published Online: 2017-10-01
Published in Print: 2017-10-01

© 2017 Scandinavian Association for the Study of Pain

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https://doi.org/10.1016/j.sjpain.2017.09.017
Keywords for this article
Patient experiences; Pain management; Pain centre; Qualitative study; Service-user feedback; Clinical audit

Articles in the same Issue

  1. Observational study
  2. Perceived sleep deficit is a strong predictor of RLS in multisite pain – A population based study in middle aged females
  3. Clinical pain research
  4. Prospective, double blind, randomized, controlled trial comparing vapocoolant spray versus placebo spray in adults undergoing intravenous cannulation
  5. Clinical pain research
  6. The Functional Barometer — An analysis of a self-assessment questionnaire with ICF-coding regarding functional/activity limitations and quality of life due to pain — Differences in age gender and origin of pain
  7. Clinical pain research
  8. Clinical outcome following anterior arthrodesis in patients with presumed sacroiliac joint pain
  9. Observational study
  10. Chronic disruptive pain in emerging adults with and without chronic health conditions and the moderating role of psychiatric disorders: Evidence from a population-based cross-sectional survey in Canada
  11. Educational case report
  12. Management of patients with pain and severe side effects while on intrathecal morphine therapy: A case study
  13. Clinical pain research
  14. Behavioral inhibition, maladaptive pain cognitions, and function in patients with chronic pain
  15. Observational study
  16. Comparison of patients diagnosed with “complex pain” and “somatoform pain”
  17. Original experimental
  18. Patient perspectives on wait times and the impact on their life: A waiting room survey in a chronic pain clinic
  19. Topical review
  20. New evidence for a pain personality? A critical review of the last 120 years of pain and personality
  21. Clinical pain research
  22. A multi-facet pain survey of psychosocial complaints among patients with long-standing non-malignant pain
  23. Clinical pain research
  24. Pain patients’ experiences of validation and invalidation from physicians before and after multimodal pain rehabilitation: Associations with pain, negative affectivity, and treatment outcome
  25. Observational study
  26. Long-term treatment in chronic noncancer pain: Results of an observational study comparing opioid and nonopioid therapy
  27. Clinical pain research
  28. COMBAT study – Computer based assessment and treatment – A clinical trial evaluating impact of a computerized clinical decision support tool on pain in cancer patients
  29. Original experimental
  30. Quantitative sensory tests fairly reflect immediate effects of oxycodone in chronic low-back pain
  31. Editorial comment
  32. Spatial summation of pain and its meaning to patients
  33. Original experimental
  34. Effects of validating communication on recall during a pain-task in healthy participants
  35. Original experimental
  36. Comparison of spatial summation properties at different body sites
  37. Editorial comment
  38. Behavioural inhibition in the context of pain: Measurement and conceptual issues
  39. Clinical pain research
  40. A randomized study to evaluate the analgesic efficacy of a single dose of the TRPV1 antagonist mavatrep in patients with osteoarthritis
  41. Editorial comment
  42. Quantitative sensory tests (QST) are promising tests for clinical relevance of anti–nociceptive effects of new analgesic treatments
  43. Educational case report
  44. Pregabalin as adjunct in a multimodal pain therapy after traumatic foot amputation — A case report of a 4-year-old girl
  45. Editorial comment
  46. Severe side effects from intrathecal morphine for chronic pain after repeated failed spinal operations
  47. Editorial comment
  48. Opioids in chronic pain – Primum non nocere
  49. Editorial comment
  50. Finally a promising analgesic signal in a long-awaited new class of drugs: TRPV1 antagonist mavatrep in patients with osteoarthritis (OA)
  51. Observational study
  52. The relationship between chronic musculoskeletal pain, anxiety and mindfulness: Adjustments to the Fear-Avoidance Model of Chronic Pain
  53. Clinical pain research
  54. Opioid tapering in patients with prescription opioid use disorder: A retrospective study
  55. Editorial comment
  56. Sleep, widespread pain and restless legs — What is the connection?
  57. Editorial comment
  58. Broadening the fear-avoidance model of chronic pain?
  59. Observational study
  60. Identifying characteristics of the most severely impaired chronic pain patients treated at a specialized inpatient pain clinic
  61. Editorial comment
  62. The burden of central anticholinergic drugs increases pain and cognitive dysfunction. More knowledge about drug-interactions needed
  63. Editorial comment
  64. A case-history illustrates importance of knowledge of drug-interactions when pain-patients are prescribed non-pain drugs for co-morbidities
  65. Editorial comment
  66. Why can multimodal, multidisciplinary pain clinics not help all chronic pain patients?
  67. Topical review
  68. Individual variability in clinical effect and tolerability of opioid analgesics – Importance of drug interactions and pharmacogenetics
  69. Editorial comment
  70. A new treatable chronic pain diagnosis? Flank pain caused by entrapment of posterior cutaneous branch of intercostal nerves, lateral ACNES coined LACNES
  71. Clinical pain research
  72. PhKv a toxin isolated from the spider venom induces antinociception by inhibition of cholinesterase activating cholinergic system
  73. Clinical pain research
  74. Lateral Cutaneous Nerve Entrapment Syndrome (LACNES): A previously unrecognized cause of intractable flank pain
  75. Editorial comment
  76. Towards a structured examination of contextual flexibility in persistent pain
  77. Clinical pain research
  78. Context sensitive regulation of pain and emotion: Development and initial validation of a scale for context insensitive avoidance
  79. Editorial comment
  80. Is the search for a “pain personality” of added value to the Fear-Avoidance-Model (FAM) of chronic pain?
  81. Editorial comment
  82. Importance for patients of feeling accepted and understood by physicians before and after multimodal pain rehabilitation
  83. Editorial comment
  84. A glimpse into a neglected population – Emerging adults
  85. Observational study
  86. Assessment and treatment at a pain clinic: A one-year follow-up of patients with chronic pain
  87. Clinical pain research
  88. Randomized, double-blind, placebo-controlled, dose-escalation study: Investigation of the safety, pharmacokinetics, and antihyperalgesic activity of L-4-chlorokynurenine in healthy volunteers
  89. Clinical pain research
  90. Prevalence and characteristics of chronic pain: Experience of Niger
  91. Observational study
  92. The use of rapid onset fentanyl in children and young people for breakthrough cancer pain
  93. Original experimental
  94. Acid-induced experimental muscle pain and hyperalgesia with single and repeated infusion in human forearm
  95. Original experimental
  96. Swearing as a response to pain: A cross-cultural comparison of British and Japanese participants
  97. Clinical pain research
  98. The cognitive impact of chronic low back pain: Positive effect of multidisciplinary pain therapy
  99. Clinical pain research
  100. Central sensitization associated with low fetal hemoglobin levels in adults with sickle cell anemia
  101. Topical review
  102. Targeting cytokines for treatment of neuropathic pain
  103. Original experimental
  104. What constitutes back pain flare? A cross sectional survey of individuals with low back pain
  105. Original experimental
  106. Coping with pain in intimate situations: Applying the avoidance-endurance model to women with vulvovaginal pain
  107. Clinical pain research
  108. Chronic low back pain and the transdiagnostic process: How do cognitive and emotional dysregulations contribute to the intensity of risk factors and pain?
  109. Original experimental
  110. The impact of the Standard American Diet in rats: Effects on behavior, physiology and recovery from inflammatory injury
  111. Educational case report
  112. Erector spinae plane (ESP) block in the management of post thoracotomy pain syndrome: A case series
  113. Original experimental
  114. Hyperbaric oxygenation alleviates chronic constriction injury (CCI)-induced neuropathic pain and inhibits GABAergic neuron apoptosis in the spinal cord
  115. Observational study
  116. Predictors of chronic neuropathic pain after scoliosis surgery in children
  117. Clinical pain research
  118. Hospitalization due to acute exacerbation of chronic pain: An intervention study in a university hospital
  119. Clinical pain research
  120. A novel miniature, wireless neurostimulator in the management of chronic craniofacial pain: Preliminary results from a prospective pilot study
  121. Clinical pain research
  122. Implicit evaluations and physiological threat responses in people with persistent low back pain and fear of bending
  123. Original experimental
  124. Unpredictable pain timings lead to greater pain when people are highly intolerant of uncertainty
  125. Original experimental
  126. Initial validation of the exercise chronic pain acceptance questionnaire
  127. Clinical pain research
  128. Exploring patient experiences of a pain management centre: A qualitative study
  129. Clinical pain research
  130. Narratives of life with long-term low back pain: A follow up interview study
  131. Observational study
  132. Pain catastrophizing, perceived injustice, and pain intensity impair life satisfaction through differential patterns of physical and psychological disruption
  133. Clinical pain research
  134. Chronic pain disrupts ability to work by interfering with social function: A cross-sectional study
  135. Original experimental
  136. Evaluation of external vibratory stimulation as a treatment for chronic scrotal pain in adult men: A single center open label pilot study
  137. Observational study
  138. Impact of analgesics on executive function and memory in the Alzheimer’s Disease Neuroimaging Initiative Database
  139. Clinical pain research
  140. Visualization of painful inflammation in patients with pain after traumatic ankle sprain using [11C]-D-deprenyl PET/CT
  141. Original experimental
  142. Developing a model for measuring fear of pain in Norwegian samples: The Fear of Pain Questionnaire Norway
  143. Topical review
  144. Psychoneuroimmunological approach to gastrointestinal related pain
  145. Letter to the Editor
  146. Do we need an updated definition of pain?
  147. Narrative review
  148. Is acetaminophen safe in pregnancy?
  149. Book Review
  150. Physical Diagnosis of Pain
  151. Book Review
  152. Advances in Anesthesia
  153. Book Review
  154. Atlas of Pain Management Injection Techniques
  155. Book Review
  156. Sedation: A Guide to Patient Management
  157. Book Review
  158. Basics of Anesthesia
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