This chapter outlines both the challenges and advantages of engaging with a previously seldom-heard group. A mixture of established good practice techniques and innovative PPI approaches has allowed us to move beyond the PPI plan outlined in our grant application and beyond what others have achieved in this field. Although we have worked exclusively within pressure ulcer research, the strategies outlined here could help service users and researchers work together in other contexts.
Chapter 3
Work package 1: pain
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hapter written by Jane Nixon, Isabelle L Smith, Michelle Collinson, Elizabeth McGinnis, Michelle Briggs, Sarah Brown, Susanne Coleman, Carol Dealey, Delia Muir, E Andrea Nelson, Rebecca Stevenson, Nikki Stubbs, Lyn Wilson and Julia M Brown.Abstract
Introduction:Patients with pressure ulcers have reported that pain is their most distressing symptom and that pain at‘pressure areas’was experienced before the clinical manifestation of pressure ulcers but that the pain was ignored by nurses. The primary aim of the research was to determine the extent of pressure area and pressure ulcer pain and explore the role of pain as a predictor of category 2 and above pressure ulcers in acute hospital and community populations.
Methods:The pain work package comprised three research projects: (1) a nested multicentre pain prevalence study in three NHS acute hospital trusts, including all inpatients; (2) a nested pain prevalence survey in two community NHS trust localities incorporating a comparison of case-finding methods, including only patients with pressure ulcers; and (3) a multicentre prospective cohort study of pressure ulcer risk factors in acute hospital and community patients.
Results:In the hospital prevalence study a total of 3397 patients in nine acute hospitals were included in routine pressure ulcer prevalence audits and, of these, 2010 (59.2%) participated in the nested pain
prevalence study. The community routine pressure ulcer prevalence audit identified 287 patients with pressure ulcers and, of these, 176 (61.3%) participated in the nested pain prevalence study. The overall prevalence of pressure ulcers was 0.58 per 1000 adult population, with differences observed between localities (locality 1=0.77 and locality 2=0.40). The unattributed pressure area-related pain prevalence was 16.3% (327/2010) in the hospital population, which included patients with and without pressure ulcers. In the hospital
population with no observable pressure ulcers, 12.6% (223/1769) reported unattributed pressure area-related pain. The prevalence of unattributed pressure area-related pain in patients with pressure ulcers was 43.2% (104/241) in hospital patients and 75.6% (133/176) in the community patients. The detailed pain assessment of 160 hospital and 37 community patients identified pressure area-related pain on skin areas assessed as normal as well as all grades of pressure ulcer. The distribution of pain intensity measured using a 0–10 nominal rating scale was similar for all grades. The dominant type of pain in hospital patients was
inflammatory pain (70.3% torso and 60.3% limb), whereas in the community patients neuropathic pain was dominant (54.5% torso and 61.1% limb). The cohort study of 632 acutely ill hospital and community patients identified significant evidence that the presence of pain at a skin site (assessed as normal, altered but intact or category 1) is an independent predictor for developing a category 2 or above pressure ulcer in four multivariable models: a priori logistic regression model, overdispersion logistic regression model and an accelerated failure time model for analyses conducted on a patient level and a multilevel logistic regression model for the analysis conducted on a skin-site level.
Conclusions:We have identified that a significant minority of hospital inpatients without pressure ulcers suffer pressure area-related pain, that approximately 40% of hospital patients and 75% of community patients with pressure ulcers report pain, that pain severity is not related to the severity of the ulcer and that both inflammatory and neuropathic pain are observed. Differences in pressure ulcer prevalence rates highlight the need for effective case ascertainment in the community setting. We have also established that the presence of pain (on skin areas assessed as normal, altered but intact or category 1 pressure ulcer) increases the risk of development of category 2 and above pressure ulcers and accelerates the time to their development. This is an area of practice that requires improved pain assessment; the incorporation of pain into risk
Introduction
Our pre-programme grant qualitative work33,34and systematic review of the pressure ulcer quality-of-life literature9found that patients with pressure ulcers report that pain is their most distressing symptom. In addition, the work highlighted that pain at‘pressure areas’(seeDefinition of terms) was experienced by patients before the clinical manifestation of pressure ulcers but that the pain was ignored by nurses. Patients blamed nurses when a pressure ulcer developed subsequently, because of the lack of action.‘Patients felt that they were responsible for communicating pain and that their care provider was responsible for attending to it, but patients’views and concerns did not always prompt action and many healthcare professionals dismissed patients’reports of pain at pressure areas’.9,33,35
As part of the programme grant we carried out a mixed-methods systematic review, in which qualitative and quantitative studies of patients’reports of pressure ulcer pain were identified and synthesised36 (seeChapter 6,Pressure ulcer-related pain: systematic review). Pain was reported as debilitating, reducing the individual’s ability to participate in physical and social activities, adopt comfortable positions, move, walk and undergo rehabilitation.36Patients with pressure ulcer pain described their experience as‘endless pain’characterised by a constant presence, needing to keep still and equipment and treatment pain.9,34,37 This confirmed the importance of pain as a feature of living with a pressure ulcer.
Reviews of the epidemiological literature carried out by Girouard and colleagues38and Pieper and colleagues39 identified eight studies reporting the prevalence of pain associated with pressure ulcers in study populations ranging from 20 to 186 participants, in diverse settings including hospitals and community and palliative care. In the four largest studies (>100 participants), pressure ulcer pain prevalence estimates ranged from 37% to 66%.40–43The reviews highlight the limitations of the existing literature, including small sample sizes, the use of non-validated measures of pain, including nurse-assessed pain outcomes, and an absence of studies that report the dominant types of pain: nociceptive pain (inflammatory) and neuropathic pain (resulting from nerve damage or tissue ischaemia).44“Understanding the characteristics of pain is important as successful pain management depends upon using interventions that address the cause(s) of the pain. A further problem with research in the field is that pain reports are limited to Category 2 and above PUs [pressure ulcers].35,38,39,45Pain associated with Category 1 PUs is not reported in most studies, nor is the presence of pain at‘pressure areas.’”Despite patient reports that pain at‘pressure areas’preceded pressure ulcer development, our risk factor systematic review46(seeChapter 5) did not identify any risk factor studies that included pain as a candidate risk factor in univariate or multivariable analysis.
‘In summary, qualitative evidence identifies pain preceding PU development and in PU management [as an important issue for patients]. Previous epidemiological research has focused on patients with existing PUs and a limitation of the literature is the lack of evidence relating to the extent of pain preceding PU development, the extent of pain associated with Category 1 PUs (the most prevalent PU Category), the type of pain (i.e. inflammatory or neuropathic)’45and the relationship between pain at‘pressure areas’and subsequent category 2 pressure ulcer development. We therefore proposed to determine both the extent of the problem and explore the role of pain as a predictor of pressure ulcer development in acute hospital and community populations.
Research overview
Work package 1 comprised the following pain prevalence and cohort studies:
1. the prevalence of pressure area-related and pressure ulcer pain in hospitalised patients (seePain prevalence in the hospital population)
2. the prevalence of pressure area-relataed and pressure ulcer pain in community patients (seePain prevalence in the community population), including a substudy comparing community pressure ulcer case-finding methods (see seeRoutine pressure ulcer audit: community setting)
3. pain cohort study exploring the role of pain as a predictor of category 2 pressure ulcers in acute hospital and community populations (seePain and pressure ulcer risk: cohort study)
WORK PACKAGE 1: PAIN
NIHR Journals Library www.journalslibrary.nihr.ac.uk 14
Definition of terms
This is the first pain research undertaken in patient populations with and without pressure ulcers. To describe pain in the study populations, we developed and used the following four terms: (1) pressure area; (2) pressure area-related pain; (3) pressure ulcer pain and (4) unattributed pressure area-related pain as follows (seeGlossaryfor description of terms):
l Pressure area. A body site where pressure ulcers commonly develop; most commonly these include the sacrum, buttocks, ischial tuberosities, hips, heels, ankles and elbows.
l Pressure area-related pain. Defined as pain, soreness or discomfort on any pressure area.
l Pressure ulcer pain. Defined as pain, soreness or discomfort on a body site with an observable pressure ulcer of category 1 or above.
l Unattributed pressure area-related pain. Defined as pain, soreness or discomfort reported by patients on a pressure area/pressure ulcer but in which the body site is not specified/recorded.35