Updates & Features
Listening to the patient – Surveys to Accurately Assess Disease Impact
April 2019
PainSolve Editorial Team
Strategies for measuring patient experience include patient-reported experience measures and patient-reported outcomes, which encompass surveys, interviews, focus groups, and patient stories, and also a combined use of both generic and disease-specific measures. The extent to which each method is representative of the population varies depending on the method used (Figure 1). For example, more descriptive methods, such as interviews or patient stories, can provide more in-depth information but may not be as generalisable.
Surveys are commonly used to assess patient experience as they have high generalisability and there are many existing, validated surveys that can be used or adapted for a particular context. On the downside, surveys can be less descriptive than other methods, may be unsuitable for certain patients, and the extent to which their use results in improved patient experience is unknown (i.e. there is currently little comparative evidence suggesting which strategies are more effective for measuring experience or monitoring changes). Table 1 provides a summary of the main benefits and drawbacks associated with the use of surveys. Important factors to consider when using surveys for measuring patient experience include: administration (the methods used to collect the data), content (of the questionnaire, rating scale, etc.), and the timeframe (the timing of data collection).1
Figure 1. Methods used to measure patient experiences1
Table 1. Main benefits and drawbacks of assessing the impact of pain using surveys1
| Advantages | Disadvantages |
| Valid, reliable, and appropriate for clinical use | Simplistic – may give a surface level information only |
| Allows for standardisation | May exclude certain patients |
| Can use a range of visual tools and scales and descriptive rating techniques | May not be the best for sensitive issues |
| Possible to administer in a number of ways | If used frequently, may cause ‘survey overload’ |
| Can be adapted for the context and tailored for individual patient and staff needs | Unclear the extent to which surveys have helped to improve patient care |
| Inexpensive, quick and easy to use and analyse | Should not be used in isolation to monitor changes over time |
| Can use open- or closed-ended questions | Non-response and selection bias |
| Gives immediate ‘real-time’ impression | |
| Most frequently researched approach for measuring patient experience | |
| Can be part of multi-faceted programmes | |
| Can help to raise standards of diagnosis and care | |
| May be correlated with other measures of disease impact |
The impact of pain
The extent of both acute and chronic pain is well documented but it remains inadequately managed and undertreated for many patients. Poorly managed pain can lead to adverse patient outcomes such as infection, poor healing, and reduced mobility, as well as emotional stress and a psychosocial impact on patients and their families/social circle. Furthermore, patient satisfaction is linked to hospital/healthcare provider performance and reputation and costs.3
The way we think about pain influences the way we assess and treat it; therefore, it is important to assess not only the biological causes of pain but also its psychosocial and behavioural impact. It is well documented that pain can impact physical functioning, mental health, and quality of life (e.g. physical capabilities, everyday activities, ability to work, sleep, emotional distress, depression, and others; Figure 2).4 Thus, impact on functioning and quality of life should be an essential part of pain assessment. Also, a major goal of pain management should be to reduce the adverse effects of pain on patient function and quality of life, not only by relieving a substantial part of it, but also by teaching the patient how to deal with the remaining consequences. Understanding the impact of pain can also help inform the patient’s expectancies for treatment and therefore treatment decisions.
Figure 2. Biomedical, psychosocial, and behavioural consequences of pain4
Assessing the impact of pain
The recognition of pain and the formal and accurate assessment of the impact of pain is critical for understanding the patient experience, to help choose and evaluate treatments, and to facilitate optimal outcomes regarding good pain management. In a sample of patients with cancer pain, Anderson et al. (2000) found that inadequate pain assessment is one of the most problematic barriers to achieving good pain control.5
Given the multidimensional nature of pain, the assessment of its impact needs a comprehensive and multifaceted approach.3,6 A number of standardised assessment tools are available and summarised in Table 2. Patient self-report measures to evaluate the patient’s pain intensity, functional abilities, beliefs and expectations, and psychological distress have become the gold standard for the assessment of pain. In fact, they are often the only viable measures because there are no objective physical or physiological markers of pain. To be effective, patient self-report measures should be completed regularly but randomly, using a standard format, and reassessed following a treatment or intervention to evaluate its effect and determine whether modification is needed.3 Standardised instruments such as self-report tools can be used to complement in depth interviews where appropriate.
Table 2. Standardised tools for pain assessment6
| Measure | Items | Assessments |
|
Unidimensional pain measures: • Numerical Rating Scale (NRS) • Verbal Rating Scale (VRS) • Visual Analogue Scale (VAS) • Facial Pain Scale (FPS) • Pain thermometer |
1 1 1 1 1 |
Pain intensity (numbered scale) Pain intensity (verbal descriptors) Pain intensity (10 or 100 mm line) Pain intensity (facial expressions) Pain intensity (thermometer) |
|
Pain quality and location: • McGill Pain Questionnaire (MPQ) • Neuropathic Pain Scale (NPS) • Regional Pain Scale (RPS) |
20 10 19 |
Pain location, quality, exacerbating/ ameliorating factors |
|
General pain interference and function: • Pain Disability Index (PDI) • Brief Pain Inventory (BPI) • PROMIS pain interference and pain behaviours item bank • Functional Independence Measure |
7 32 41/39 18 |
Pain disability and interference Pain intensity and interference Pain interference and associated behaviours Physical and cognitive ability; care burden |
|
Disease specific pain interference and function: • Western Ontario MacMaster Osteoarthritis Index (WOMAC) • Fibromyalgia Impact Questionnaire (FIQ) • Roland-Morris Disability Questionnaire (RDQ) |
24 20 24 |
Pain and function in osteoarthritis Health status in fibromyalgia Pain and disability in back pain |
|
Health-related quality of life: • Medical Outcomes Study, Short Form Health Survey (SF-36) • EuroQol (EQ-5D) • West Haven-Yale Multidimensional Pain Inventory (MPI) • Sickness Impact Profile (SIP) |
36 60 5 136 |
Mental and physical health Pain severity, interference, mood, support Health status, pain, and mood Physical and psychosocial dysfunction |
|
Psychosocial measures: • Beck Depression Inventory (BDI) • Profile of Mood States (POMS) • Symptom Checklist-90 Revised (SCL-90R) • Pain Catastrophizing Scale (PCS) • Coping Strategies Questionnaire (CSQ) |
21 65 90 13 10 |
Depressive mood Mood and emotional functioning Psychological functioning Catastrophic thoughts related to pain Coping strategies for chronic pain |
|
Observational pain assessments: • Pain Behaviour Checklist (PBC) • Real-time assessment of behaviour |
16 5 |
Assess pain behaviours (observational) Assess pain behaviours (real-time) |
Although there are a number of recommendations and guidelines for assessing pain3, there is evidence that the available tools are not regularly used in practice. Successful use depends on the patient’s ability to use the scale and the interpretation by healthcare professionals.7 Furthermore, selection of the pain assessment measure should be a collaborative decision between the patient and the healthcare provider.3
A small pilot questionnaire survey of nurses suggests that a variety of verbally administered self-report pain assessment scales, such as the Numerical Rating Scale and the Verbal Descriptor Scale, are available and routinely used in everyday clinical practice.7 However, no one assessment scale is used universally and behavioural or observational tools (e.g. the Pain Assessment in Advanced Dementia) are less well used.7 This has potentially important implications for the assessment of people who cannot use a self-report assessment scale, e.g. those with communication issues, cognitive impairment, or advanced dementia.
The individuality of pain
People experience pain in very different ways, meaning it is difficult to develop an overall standard measure of disease impact. Even so, it is important that researchers and healthcare professionals work on developing consistent, effective, standardised instruments that can be applied in a number of different situations.
The pain experience is individual in a number of ways: each patient has a distinct pain history, i.e. unique experiences, impacts, treatments, coping responses, patient and family expectations and beliefs, and the pain experience is shaped by a number of biomedical, psychosocial, and behavioural factors. This is shown in the different ways patients describe or show their pain, e.g. dull, aching, cramping, stabbing, shooting, or burning. Understanding this is an important factor in listening to the patient. Furthermore, the pain experience may not accurately reflect the amount or type of organic pathology; thus, precisely assessing and diagnosing a pain problem is not straightforward or well-defined.6
Future directions – The importance of patient insight
Successful treatment of patients with pain can realistically only be achieved if we understand the impact of the disease on the individual and recognise that it is an important component of the overall pain evaluation. This includes issues of complexity of pain and impact on diverse aspects of function. In a broader context, successful assessment of the impact of pain may affect the development of new therapies.
Safe pain management includes the use of appropriate tools to assess the impact of pain, otherwise pain may be unrecognised or underestimated.3 Of utmost significance is patient experience and insight; essentially, the person in pain needs to be listened to and believed. Assessments should focus on the whole person (physical, psychological, social, quality of life); and the method of assessment needs to be appropriate for the individual patient (e.g. level of communication, cognitive ability, sedation). Furthermore, methods should be documented and communicated for future consistency. Thus, patient experience and impact measures should be seen as one component of a broader framework of measurement.
Grünenthal has used insights from patient surveys and interviews to help understand the true impact of pain and the different experiences of people with pain conditions.
References
- The Health Foundation. No. 18 Measuring patient experience. June 2013. Available at: https://www.health.org.uk/sites/default/files/MeasuringPatientExperience.pdf
- Riskind P, et al. J Med Pract Manage 2011;26(4):217–20
- Wells N, et al. Chapter 17 in: Hughes RG (editor) Patient safety and quality: An evidence-based handbook for nurses. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008
- Dueñas M, et al. J Pain Res 2016;9:457–67
- Anderson KO, et al. Cancer 2000;88(8):1929–38
- Dansie EJ, et al. Br J Anaesth 2013;111(1):19–25
- Gregory J, et al. J Pain Relief 2014;3(2):140. doi: 10.4172/2167-0846.1000140