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A Systematic Review of the Patient- and Carer-Related Factors Affecting the Experience of Pain for Advanced Cancer Patients Cared for at Home
Accepted Manuscript A systematic review of the patient and carer related factors affecting the experience of pain for advanced cancer patients cared for at home John A. Smyth, DClinPsych, Martin Dempster, PhD, Ian Warwick, MB BCh, Pauline Wilkinson, FRCP, Noleen K. McCorry, PhD PII:
S0885-3924(17)30417-7
DOI:
10.1016/j.jpainsymman.2017.08.012
Reference:
JPS 9554
To appear in:
Journal of Pain and Symptom Management
Received Date: 4 May 2017 Revised Date:
15 August 2017
Accepted Date: 15 August 2017
Please cite this article as: Smyth JA, Dempster M, Warwick I, Wilkinson P, McCorry NK, A systematic review of the patient and carer related factors affecting the experience of pain for advanced cancer patients cared for at home, Journal of Pain and Symptom Management (2017), doi: 10.1016/ j.jpainsymman.2017.08.012. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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A systematic review of the patient and carer related factors affecting the experience of pain for advanced cancer patients cared for at home John A Smyth DClinPsych1 Ian Warwick MB BCh2 Pauline Wilkinson FRCP2 Noleen K. McCorry PhD3
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Martin Dempster PhD1
School of Psychology, Queen’s University Belfast, UK
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Marie Curie Hospice, Belfast, UK
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Centre of excellence for Public Health Northern Ireland, Queen’s University Belfast, UK
Corresponding author:
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Dr Martin Dempster, School of Psychology, Queens University Belfast,18-33 Malone Rd. Belfast, BT9 5BN, UK Email: [email protected]
No. of tables: 3 No. of figures: 1 No. of references: 68
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Word count: 3661
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Phone: +44 28 90975547
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This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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Abstract
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Context: Effective pain management is a priority in the palliative care of advanced cancer patients. A body of research is emerging examining the factors that influence the management and experience of pain for such individuals. Identifying such factors should allow for the development of targeted interventions to improve pain management in the home while ultimately reducing unnecessary suffering for the patient. Objectives: To identify relevant patient and carer related factors which have an effect on the pain experienced by advanced cancer patients cared for at home.
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Method: Systematic review following the PRISMA statement guidelines. Studies were retrieved from the CINAHL, MEDLINE and Web of Science and assessed independently by two reviewers with discrepancies assessed by a third prior to quality assessment and data extraction. A narrative synthesis was produced.
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Results: Our search strategy produced 720 hits of which 10 studies were retained for the final analysis. The factors identified included: carer knowledge of cancer pain management, carer burden, carer and patient distress, pain rating disparity, patient wellbeing, patient depression, patient affective experience, patient body image and satisfaction with palliative/medical care. All factors identified are supported by only some evidence with many having only been explored in single studies.
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Conclusions: There is a lack of quantitative research in the area of factors influencing the experience of pain for advanced cancer patients cared for at home. Such findings would be useful in developing theories of change that would underpin interventions aimed at improving pain outcomes for this population. Keywords: Pain management, Advanced Cancer, Systematic review
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Running Title: Patient and carer related factors in pain
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Introduction Providing palliative care in the home can be challenging, especially when it comes to achieving sufficient control over pain, with only one third of patients
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believing this to be achievable(4,5) . In fact, some reports note that as many as 28% of patients die in significant pain, despite the means for a pain free death being
available(6). A high level of skill and knowledge is needed to confidently provide
adequate pain management, the onus of which often lies with unpaid carers who feel
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ill-equipped for this task(5,7). Failure to follow prescribed pain management regimes
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at home is common with some studies reporting non-adherence rates as high as 70%(8). This can result in inadequate pain control, unnecessary suffering for the patient, and increased health care costs(9-11).
In recent years, efforts have been made to discover salient patient and carer related factors influencing the pain experienced by advanced cancer patients. One
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review noted that a large proportion of patients were reluctant to report pain or take pain medication due to attitudinal barriers including fears relating to addiction and side effects(12). Two major limitations of such reviews are apparent: they often fail to
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examine the effects such barriers actually have on the pain experienced by the
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patient, or they restrict the populations examined to inpatients.
Other psychological variables apart from attitudinal barriers have also been
shown to be related to the patient’s experience of pain. A patient’s mood as well as cognitive abilities related to capacity, such as executive functioning, can have an impact on the pain experienced by such individuals, both directly and indirectly (14,15).
In the home setting, as the health of the person with advanced cancer deteriorates, they become more reliant on others to assess the level of pain they are
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experiencing and thus the level of analgesia required. For pain management to be effective, a carer’s estimations of the pain experienced by the patient must be congruent with the patient’s own subjective experience to avoid under or over use of
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analgesics. Studies have found that incongruence between such estimates and actual reported pain are more likely in cases where both the patient and carer report poor quality of life and higher reported levels of carer burden (16,17).
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A recent review found that approximately half of the interventions addressing pain in people with advanced cancer were ineffective (18). The majority of such
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interventions lacked a strong evidence base and only focused on improving knowledge of pain management without attempting to address other salient factors.
Guidance from the UK Medical Research Council states that evidence based models are necessary prerequisites to the development of tailored interventions, to
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highlight the factors that should become the focus of any complex intervention (19). Before such models can be designed and tested, a clearer picture of the factors related to the experience of pain for the advanced cancer patient cared for at home
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is needed. Previous reviews in this area have been conducted, however they have not addressed carer related factors (20) or were purely qualitative in nature (21).
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The aim of this review is to identify the patient and carer factors that are related to pain experienced among people with advanced cancer cared for at home. For the purpose of the review, patient and carer factors were defined as any factor which relates to a patient’s or carer’s psychological or physical capacity to engage in pain control. This also included any cognitive processes related to directing one’s behavior or any affective responses. This definition was derived from a recent model of health related behaviours(1).
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Methods The review is reported in line with a modified version of the Preferred Reporting Items for Systematic Reviews and Meta Analyses statement guidelines (PRISMA)(2).
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The style is modified as this review was not aimed at assessing interventions directly. Eligibility criteria
Quantitative research articles published in a peer reviewed journal in the English language.
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Studies were deemed eligible for the review if they met the following criteria:
Study samples had to include individuals with advanced cancer (in receipt of the majority of their care in the home setting), and/or their unpaid carer(s). Advanced cancer was defined broadly as a person with
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a diagnosis of cancer and at least one of the following: Karnofsky Performance Status of 50 or less; Eastern Co-operative Oncology Group score of 3 or more; life expectancy of 6 months or less; cancer unlikely
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to be cured; in receipt of palliative care. Include an estimate of pain experienced. Within the relevant literature
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there is no gold standard method for assessing pain for this population, so this was defined as any self-report or validated measure of pain; pain level experienced or satisfaction ratings of pain control.
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Assess the relationship between pain experienced and one or more patient and/or carer factors.
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Information sources Articles were sourced from the following databases: Medline, CINAHL and Web of Science. The search was inclusive of all articles from the earliest available
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date until March 2016. Search strategy
The exact search strategies used in the three databases are given in Table 1.
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To devise this strategy, relevant search terms were adopted from the key terms quoted in studies identified during a scoping exercise. These terms were then
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entered into the three databases. Any other related terms identified were then added to the search strategy. This draft search strategy was reviewed by two researchers who were familiar with the area of palliative care and a subject librarian, who ensured the databases were used correctly. At this stage several terms were removed as they were deemed repetitive while others were added. Medical Subject
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Headings were utilized in CINAHL and Medline databases. Differences in the specific search strategies reflect the different terminology used in the various databases.
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Study selection and data collection
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Due to the large number of articles retrieved in the search the eligibility criteria were initially applied, independently by two assessors (JS,IG), to the articles’ titles and abstracts. The next stage of selection involved reviewing the full text articles. Articles reviewed at this stage included those which both assessors agreed should be included due to meeting the eligibility criteria or in situations where there was inadequate information in the title and abstracts to warrant a decision. In instances where the assessors disagreed, a third assessor (MD) decided if the article should go forward for full text review. At this stage the full text of articles were reviewed,
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independently by the same two assessors with the third assessor deciding any disagreements. Finally, a quality assessment was applied to those articles which remained after full text assessment, using an adapted version of the Quality
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Assessment Tool for Quantitative Studies developed by the Effective Public Health Practice Project (3). This tool was developed for use with systematic reviews of
effectiveness in the area of public health and provides a score indicating if a study is
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of strong, moderate or weak quality. This adapted tool covers quality criteria of selection bias, validity and reliability of data collection tools, withdrawals and
Results Data extraction and analysis
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dropouts, sample size and if a priori power calculations had been made.
A total of 720 articles were identified and 556 of these articles were excluded
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due to duplication and failure to meet the eligibility criteria. The remaining 164 articles had their full text scrutinized. A further 154 articles were excluded at this stage. Thus a total of 10 studies were included in the synthesis (see Figure 1). The
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characteristics of these studies are outlined in Table 2.
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Study characteristics and quality assessment Of the studies retained, three were considered to be strong in quality;(6,33,51) a
further four were of moderate quality,(22,25,36,42) while three studies were considered weak.(28,38,47) Seven of the ten studies used measures which had previously been assessed as both reliable and valid. Of the other three studies, two did not use a psychometrically validated measure and one had moderate ratings due to not reporting reliability. No study was found to be strong with regards to selection bias.
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Six studies were classed as moderate in this area with the remaining four studies being classed as weak. Only two studies used random selection of the sample whereas all other studies sampled from the desired population in a systematic
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manner. High completion rates of greater than 80% were reported in only one study, another reported rates between 60 to 79 %, one further study reported below 60%
participation whereas for five studies participation rates were not reported or could
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not be calculated. Sample size varied considerably across the studies. Five studies had samples in excess of 100 participants; a further four had between 50-99
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participants included in their final analysis, whereas only one study had a sample size less than 50. Only one study provided a sample size calculation based on power considerations. Review findings
Carer factors
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The results extracted from the included studies are reported in Table 3.
Only one of the included studies (38) examined the relationship between carer
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distress and the patient’s own pain rating. A medium sized positive correlation was found (r = 0.48). Related to carer distress, this study also examined the relationship
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between pain and carer burden. A stronger positive correlation was found (r = 0.59). This same study was the only one included in the review that assessed the relationship between patient pain experienced and disparity between this and their carer’s estimation of pain experienced. Disparity scores were calculated as the difference between the patient’s pain rating and the carer’s estimation item from the Family Pain Questionnaire (FPQ) (24) A small negative correlation (r = - 0.15) was found.
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Patient factors Yennurajalingam and colleagues (51) examined the impact of a number of covariates as predictors of pain scores on the Edmonton Symptom Assessment
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Scale (ESAS) (43) . This analysis found that “feelings of wellbeing” were weakly related to pain experienced (r = - 0.05). In line with these results, a contrasting
concept, ‘psychological distress’, was assessed by Redinbaugh et al. (38). A large
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positive correlation was reported (r = 0.53) between distress and pain ratings. Psychological aspects of quality of life and their relationship to pain was also
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reported by Mendes et al (36). Participants were separated into four groups based on the level of pain experienced (no pain, mild, moderate, intense). Only the means for each group’s scores on the various domains were reported. As seen in Table 3, the no pain group reported the highest psychological quality of life followed by the moderate pain group, mild pain group and finally the intense pain group. A fourth
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study by Grassi et al (25) focused on psychological wellbeing and distress however this study was concerned specifically with patients’ mood using the Hospital Anxiety and Depression Scale (HADS) (27) as a measure of depression. From the reported
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results it was possible to calculate the effect size between pain scores and the difference between those considered depressed and those not. A small positive
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effect was found (r = 0.15). Sela et al. (6) examined the relationship between pain and aspects of psychological wellbeing. Specifically they examined if there was a relationship between a number of specific emotions and pain intensity. This study also analyzed results according to gender and found males to have a strong positive correlation between pain intensity and frustration (r = 0.73) with weak positive correlations being reported for anger (r = 0.34) and exhaustion (r = 0.32). For females the strongest correlation was found between pain intensity and exhaustion (r
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= 0.58). Moderate positive correlations with pain intensity were found for helplessness (r = 0.43), frustration (r = 0.39), hopelessness (r = 0.37) and anger (r = 0.30).
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Rhondali et al (42) also looked at patient body image and its impact on pain
experienced, based on scores from the ESAS (48). A small positive correlation was found between these pain scores and body image dissatisfaction scores as
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measured by the Body Image Scale (BIS) (44) (r = 0.25).
Other patient factors identified include activities of daily living, which showed a
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moderate relationship with pain (r=0.46) in a single study, (38) and existential quality of life, which showed a large relationship with pain (r=0.70) in the same study. Perception of care
One study by Yamagishi et al (47) examined the relationship between worst
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pain experienced in the last 24 hours, quality of palliative care received and satisfaction with medical care received. Both factors showed small negative correlations with pain intensity (quality r = - 0.27, satisfaction r = -0.26).
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Knowledge of pain management
Three studies examined the effects (on patient experience of pain) of
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interventions designed to improve knowledge of pain management. These studies do not directly provide information about the association between knowledge and pain. Although it is relevant to note that interventions aimed at improving knowledge about pain have an effect on patient perception of pain (which indicates a potential association), no conclusions can be drawn about associations when the intervention does not have the intended effect.
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Lovell et al (33) demonstrated a large effect for their interventions on average pain intensity and a moderate effect for worst pain experienced. Aubin et al (22) also found a large effect on average pain intensity for their intervention and for maximum
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pain experienced. Another intervention study (28) aimed at improving knowledge of pain management using a partner guided training protocol. The intervention arm
showed marginally greater improvements compared to the control arm for ‘weeks
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‘weeks worst pain’ the control arm was superior.
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usual pain intensity’. However when pain experienced was measured based on
Discussion
This review was conducted to assess what patient and career related factors have been shown to be related to pain experienced by advanced cancer patients cared for at home. Only a small number of factors were identified with studies
Patient Knowledge
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showing inconsistent results.
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There is a lack of research available focusing on the relationship between knowledge of pain management and pain outcomes for advanced cancer patients.
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This begs the question why efforts have been made to develop interventions when the relationship in question remains unclear. If a lack of knowledge leads to poorer pain related outcomes then one would expect to find much greater efficacy for knowledge based interventions than previous reviews have (55-57) . Although some authors have pointed to a lack of heterogeneity amongst educational interventions as the source of such inconsistent findings (55), one must consider that there is a lack of a strong theoretical basis for these interventions due to the lack of a thorough examination of the critical factors. Our review mirrors this inconsistency. In the one
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study which looked at knowledge directly (38) a small effect was found between carer knowledge of pain management and pain experienced. On the other hand, one of the other intervention studies (22) included here found a large positive effect for
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improvements in pain experienced, measured in a number of ways for participants whose knowledge improved following the intervention whereas the control group
actually showed a decrease in knowledge and no improvement in pain experienced.
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Conclusions drawn from this study must be done so with caution due to the use of
non-equivalent comparison groups which differed significantly at pre intervention and
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potential for selection bias. Furthermore the interventions used appear to differ greatly. Therefore, no concrete conclusions can be drawn regarding the impact, or indeed the associations that carer knowledge of pain management has on pain outcomes in this population. Patient well-being
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A number of patient related factors were identified including psychological distress, which was noted in one study (38) to have a medium size positive correlation with pain experienced. This finding was further supported by another study, (25) which
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reported a small positive correlation between scores on the HADS (27) depression subscale and pain intensity. Whilst these constructs cannot be considered identical,
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they are related. The former study is, however, hampered by its small sample size. Another study (6) examined the relationship between psychological distress and pain and found a range of relationships from weak to strong. Again one must be cautious in comparing the findings to those previously mentioned as this study relies on very simplistic measures of the various emotions (Visual Aanalogue Scales for each emotion).
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Another psychological construct, body image, was found to have a small correlation with pain intensity (42) and showed a strong association with depression. Again this relationship was only supported by findings from a single study which,
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although it claims to be prospective in design, this is only partially true as patients were required to retrospectively recall their satisfaction with their body image prior to entering palliative care.
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In summary these findings indicate that there is no strong evidence about the relationship between psychological distress and severity of pain experienced by
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people with advanced cancer, partly due to the lack of consistency of assessing psychological distress. Other research suggests mood and wellbeing may mediate other processes which in turn impact pain. As Li et al (15) noted, the advanced cancer patient’s mood may impact on aspects of their cognitive functioning such as executive functioning abilities and subsequently their quality of life. This review was
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unable to conclusively indicate the true impact of mood or psychological wellbeing on pain, and it may be the case that a causal or reciprocal relationship exists between such distress and pain.
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Systemic factors
Only one study can be considered to examine the relationship between
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systemic factors and pain. (47) Less pain was seen to be related to: higher quality palliative care, and greater satisfaction with the medical care received. Due to the location of this study in a non-western society in Japan where individuals are often seen to have “stoic” attitudes towards pain (65,66) this may limit the comparisons that could be made to patients in Western countries .
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Carer factors Three additional carer factors were identified by this review, two of which (burden and distress) were shown to have medium size correlations with patients’
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reported pain levels. Both of these factors were assessed by only one study (38)
which was cross-sectional in nature and had a small sample size. This study also noted that there was a relationship between higher carer distress and greater
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inaccuracy in carer estimates of pain. Although this study found no relationship
between the disparity scores of carer’s estimation of patient pain with actual levels of
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pain experienced, such disparities may be important, especially towards the latter stages of cancer where patients are reliant on carers to provide accurate estimations and adapt treatment accordingly. For example it has been noted elsewhere that high disparity was related to higher levels of pain experienced (59) and poorer quality of life for both patient and carer (60,61).
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Again the lack of research in the area of carer burden, distress and inaccurate pain estimation for advanced cancer patients in the home setting must be addressed before efforts are made to develop interventions targeting such variables. Research
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exists which implicates such factors for those in inpatient settings but it is important to consider the effects of complex interactions which exist between the carer and the
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patient (62). Additional variables (such as beliefs (63)) may exist in the home setting which could potentially complicate such interactions.
Summary and implications of findings The conclusions derived from this review must be considered in light of its limitations. The use of a third reviewer to analyze disagreements between the two
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independent reviewers at the screening stages helped to reduce bias although there was a less than perfect inter-rater reliability score. The review also focused solely on the direct experience of pain reported by the patient, and so cannot make any claims
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about related variables such as pain interference. The emphasis of this review was to identify the patient and carer related
factors that have a potential relationship to the pain experienced by advanced cancer
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patients cared for at home. A small number of studies examined such relationships, with psychological distress being the most commonly studied factor included in the
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review.
Clearly there is a need for more research in this area before any conclusions can be drawn that might benefit the design of interventions. Specifically, we recommend that:
An agreed measure of patient distress is used among people with
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advanced cancer, to enable comparison of studies focusing in this area and which would be a useful outcome measure in any future intervention study (as per the recommendations of the Core Outcome
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Measures in Effectiveness Trials (COMET) Initiative (http://www.cometinitiative.org/).
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Further research is undertaken to determine whether there are modifiable patient and carer factors that are related to pain severity. Research with a longitudinal design would be helpful in allowing some estimation of the directionality of any relationships found.
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Future interventions aimed at improving the experience of pain for patients need to be based on a theory of change that is evidence
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based, to increase the likelihood of effectiveness and reduce opportunity costs. As noted previously there is a move within wider health care provision to shift the
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location of care from institutional settings to a person’s own home (68) in line with
patients’ own preferences (4). The current review calls into question the legitimacy of such interventions in the home setting as it cannot be assumed that the factors
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influencing pain outcomes are identical for both inpatient and outpatient settings.
Identifying such factors for the home setting should be considered the first step in
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developing clinical interventions to improve pain outcomes in line with
recommendations by the UK Medical Research Council (19). As briefly alluded to previously, it is unlikely that the factors simply have a linear causal relationship and are more likely to affect pain outcomes through complex interactions with a number of variables which could not be identified through the nature of this review eg.
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barriers due to beliefs around opioid use (12). Utilizing behavior change models, such as the Capability, Opportunity, Motivations and Behaviour (COM-B) model, can be a useful framework for identifying factors worthy of investigation, that can then be
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matched with an appropriate intervention technique (1) .
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(33) Lovell MR, Forder PM, Stockler MR, Butow P, Briganti EM, Chye R, et al. A randomized controlled trial of a standardized educational intervention for patients with cancer pain. J Pain Symptom Manage. 2010;40(1):49-59. (34) Daut RL, Cleeland CS, Flanery RC. Development of the Wisconsin Brief Pain Questionnaire to assess pain in cancer and other diseases. Pain. 1983; 17(2):197210. (35) Sloan JA, Loprinzi CL, Kuross SA, Miser AW, O'Fallon JR, Mahoney MR, et al. Randomized comparison of four tools measuring overall quality of life in patients with advanced cancer. J Clin Oncol. 1998;16(11):3662-3673. (36) Mendes TR, Boaventura RP, Castro MC, Mendonça MAO. Occurrence of pain in cancer patients in palliative care. Acta Paulista de Enfermagem. 2014; 27(4):356361.
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(37) Skevington SM, Lotfy M, O'Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of life Research. 2004;1 3(2):299-310.
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(38) Redinbaugh EM, Baum A, DeMoss C, Fello M, Arnold R. Factors associated with the accuracy of family caregiver estimates of patient pain. J Pain Symptom Manage. 2002; 23(1):31-38.
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(39) Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995; 9(3):207219. (40) Derogatis LR, Melisaratos N. The Brief Symptom Inventory: An introductory report. Psychol Med. 1983; 13(03):595-605.
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(43) Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. J Palliat Care.1991; 7(2): 6-9. (44) Hopwood P, Fletcher I, Lee A, Al Ghazal S. A body image scale for use with cancer patients. Eur J Cancer. 2001; 37(2):189-197.
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(45) Bjordal K, Hammerlid E, Ahlner-Elmqvist M, de Graeff A, Boysen M, Evensen JF, et al. Quality of life in head and neck cancer patients: Validation of the European Organization for Research and Treatment of Cancer Quality of Life QuestionnaireH&N35. J Clin Oncol. 1999; 17(3):1008-1019. (46) Weitzner MA, Jacobsen P, Wagner Jr H, Friedland J, Cox C. The Caregiver Quality of Life Index–Cancer (CQOLC) scale: Development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of Life Research. 1999; 8(1-2):55-63. (47) Yamagishi A, Morita T, Miyashita M, Igarashi A, Akiyama M, Akizuki N, et al. Pain intensity, quality of life, quality of palliative care, and satisfaction in outpatients with metastatic or recurrent cancer: A Japanese, nationwide, region-based, multicenter survey. J Pain Symptom Manage. 2012;43(3):503-514.
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(48) Uki J, Mendoza T, Cleeland CS, Nakamura Y, Takeda F. A brief cancer pain assessment tool in Japanese: The utility of the Japanese Brief Pain Inventory—BPIJ. J Pain Symptom Manage. 1998; 16(6):364-373.
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(49) Miyashita M, Morita T, Sato K, Hirai K, Shima Y, Uchitomi Y. Good death inventory: a measure for evaluating good death from the bereaved family member's perspective. J Pain Symptom Manage. 2008; 35(5):486-498. (50) Morita T, Hirai K, Sakaguchi Y, Maeyama E, Tsuneto S, Shima Y. Measuring the quality of structure and process in end-of-life care from the bereaved family perspective. J Pain Symptom Manage. 2004; 27(6):492-501.
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(51) Yennurajalingam S, Urbauer DL, Casper KL, Reyes-Gibby CC, Chacko R, Poulter V, et al. Impact of a palliative care consultation team on cancer-related symptoms in advanced cancer patients referred to an outpatient supportive care clinic. J Pain Symptom Manage. 2011; 41(1):49-56.
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(52) Breitbart W, Rosenfeld B, Roth A, Smith MJ, Cohen K, Passik S. The memorial delirium assessment scale. J Pain Symptom Manage. 1997; 13(3):128-137. (53) Bush B, Shaw S, Cleary P, Delbanco TL, Aronson MD. Screening for alcohol abuse using the CAGE questionnaire. Am J Med. 1987; 82(2):231-235.
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(54) Skevington SM, Lotfy M, O'Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of life Research. 2004; 13(2):299-310. (55) Adam R, Bond C, Murchie P. Educational interventions for cancer pain. A systematic review of systematic reviews with nested narrative review of randomized controlled trials. Patient Educ Couns. 2015; 98(3):269-282.
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(56) Allard P, Maunsell E, Labbé J, Dorval M. Educational interventions to improve cancer pain control: a systematic review. J Palliat Med. 2001; 4(2):191-203.
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(57) Oldenmenger WH, Smitt PAS, van Dooren S, Stoter G, van der Rijt, Carin CD. A systematic review on barriers hindering adequate cancer pain management and interventions to reduce them: A critical appraisal. Eur J Cancer. 2009; 45(8):13701380. (58) Ling C, Lui LY, So WK. Do educational interventions improve cancer patients’ quality of life and reduce pain intensity? Quantitative systematic review. J Adv Nurs. 2012; 68(3):511-520. (59) Lin C, Lai Y, Lo E. Life-extending therapies among patients with advanced cancer: patients’ levels of pain and family caregivers’ concerns about pain relief. Cancer Nurs. 2001;24 (6):430-435. (60) Meeker MA, Finnell D, Othman AK. Family caregivers and cancer pain managment: A review. J Fam Nurs. 2011; 17(1):29-60.
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(61) Miaskowski C, Zimmer EF, Barrett KM, Dibble SL, Wallhagen M. Differences in patients' and family caregivers' perceptions of the pain experience influence patient and caregiver outcomes. Pain. 1997; 72(1):217-226.
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(62) Zwahlen D, Hagenbuch N, Jenewein J, Carley MI, Buchi S. Adopting a family approach to theory and practice: measuring distress in cancer patient–partner dyads with the distress thermometer. Psycho‐Oncol. 2011; 20(4):394-403. (63) Riley-Doucet C. Beliefs about the controllability of pain: Congruence between older adults with cancer and their family caregivers. J Fam Nurs. 2005; 11(3):225241.
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(64) Yeh M, Chung Y, Hsu MF, Hsu C. Quantifying psychological distress among cancer patients in interventions and scales: a systematic review. Curr Pain Headache Rep. 2014; 18(3):1-9.
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(65) Garro LC. Culture, pain and cancer. J of Pallit Care. 1990; 6(3):34-44. (66) Narayan M. Culture's effects on pain assessment and management. Amer J of Nurs 2010; 110(4):38-47. (67) Bennett MI, Bagnall A, Closs SJ. How effective are patient-based educational interventions in the management of cancer pain? Systematic review and metaanalysis. Pain. 2009; 143(3):192-199.
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(68) Given B, Wyatt G, Given C, Sherwood P, Gift A, DeVoss D, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum. 2004;31(6):1105-1117.
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Table 2. Description of the studies included in this review Sample n
Setting
Age: M (SD) years
Cancer Diagnosis (% of sample)
Measure of pain experienced (completed by patient)
Lung 54 Breast 11 Digestive 22 Genital-urinary 5 Other 8
Brief Pain Inventory(23)
Gender % Quasiexperimental, pretest/post-test, nonequivalent group
n = 41
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Aubin et al. (2006) (22)
Age: 64.6(11.5)
Four community based healthcare centres, Quebec, Canada
Male: 59%
Cross sectional survey design Oncology Home Care Service, Ferrara, Italy
Keefe et al.
n = 86
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Mean time since diagnosis: 17.6 months
Age: 66.8(11.6)
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Grassi et al. (1996) (25)
Feasibility study, randomised control
Male: 58% n = 78
Relevant Patient/carer factors
Overall Quality Assessment
Family Pain Questionnaire (FPQ) (24) knowledge subscale
Weak
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Study design
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Ref
Intervention: Two hour educational intervention on the assessment and management of pain including the use of a video guidance, pain diary and tailored guidelines for specific patient pain management recommendations
Lung 29 Breast 14 Gastrointestinal 15 Genito-urinary 14 Other 28
European Organization for Research Treatment of Cancer Quality of Life Questionnaire(26) Pain subscale
Hospital Anxiety and Depression Scale(27)
Moderate
Lung, breast and prostate 56
Brief Pain
Intervention: 3 home based partner and patient training
Weak
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Randomised control trial
n =185
Oncology and radiation outpatient clinics, palliative care clinics and community services, New South Wales, Australia
Home Palliative Care service, Uberlandia, Brazil
Redinbaugh et al. (2002)(38)
Cross sectional survey design
Wisconsin Brief Pain Inventory(34)
Intervention: Booklet and video based educational intervention for cancer pain management
Strong
Male: 43%
n = 56
Gastrointestinal 31 Respiratory 14 Genito-urinary 14 Head/neck 11 Gynecological 9 Breast 7 Other 14
Pain assessment scales numerical, verbal (yes or no) and analogue (mild, moderate, severe)
World Health Organization Quality of Life Measure Brief version(37)
Moderate
No information
Patient self-rated pain on a scale of 010 (0=no pain
Knowledge; extracted item ("how much pain relief is your family member
Weak
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Cross sectional survey design
Age: 62(SD not reported)
Age: 65.8(14.7)
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Mendes et al. (2014) (36)
Breast 25 Lung 18 Prostate 11 Genito-urinary 9 Bowel 8 Other 29
Male: 56%
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Lovell et al. (2010) (33)
Inventory(23)
Male: 45%
n = 31 patient/carer
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Hospices and cancer centre outpatient clinics, New Hampshire, North Carolina, USA
Other 44
sessions in pain management facilitated by a nurse educator. Included cognitive behavioural coping strategies and supplementary written, video and audio resources.
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Age: 60.5(SD not reported)
trial
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(2005) (28)
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dyads
10=extreme pain)
Patients Age: 64(16.3) Carers Age: 56.2(13.9)
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Male Patients 39%
Age: 54(14) Male: 42%
Gastrointestinal 22 Lung 22 Head/neck 14 Breast 10 Gynecological 8 Genito-urinary 5 Other 19
Edmonton Symptom Assessment System(43) Pain subscale
Body Image Scale(44)
Moderate
Pain intensity over the past two weeks,
VAS examining 6 affect dimensions (frustration,
Strong
Sela et al. (2002) (6)
Cross sectional survey design
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Outpatient supportive Care clinic, Texas, USA
n = 81
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Cross sectional survey design
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Male Carers: 32%
Rhondali et al. (2013) (42)
currently experiencing") from the experience subscale of the Family Pain Questionnaire(24) McGill Quality of Life Scale(39) with pain items removed from the symptom subscale Carer psychological distress: Brief Symptom Inventory(40) Caregiver Burden Screen(41) Patient Activities of Daily Living Needs
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Two home hospice care services, Pennsylvania, USA
n = 111 Age:
Median(IQR) time since diagnosis: 2.3(1.2 - 4.7) years
Breast 26 Lung 25
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Yennurajalingam et al. (2011) (51)
Retrospective study of patients electronic medical charts following palliative care consultation intervention Outpatient supportive care clinic, Texas, USA
Male: 55%
n = 406 Age: 58(14) Male: 47%
Lung and head/neck 29 Breast 11 Gastrointestinal 17 Gynecological 7 Other 36
Edmonton Symptom Assessment System(43) Pain subscale
anger, fear, exhaustion, helplessness and hopelessness)
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Japanese Brief Pain Inventory(48)
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Age: 67(11)
Lung 26 Breast 17 Colon/rectum 15 Prostate 10 Stomach 9 Liver 5 Other 18
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Hospice outpatient clinics from four regions across Japan
n = 859
visual analogue scale
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Cross sectional survey design
Male: 47%
Gastrointestinal 11 Genito-urinary 5 Gynecological 5 Other 28
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Yamagishi et al (2012) (47)
60.3(11.1)
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Cancer pain and symptom control clinic, Canada
Patient perceived quality of palliative care: Care Evaluation Scale(50)
Weak
Satisfaction with medical care: 6 point single item satisfaction scale (1 very dissatisfied- 6 very satisfied) Edmonton Symptom Assessment System(43) Feeling of Wellbeing subscale
Strong
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Table 3.Summary of review findings
Patient/Carer Factor
Studies
Outcome
Findings
HADS (depressed/nondepressed)
Grassi et al. (1996) (25)
EORTC Symptom Scale (pain subscale)
r = 0.15
WHOQOL BREF (psychological subscale)
Mendes et al, (2014)(36)
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 63.6 x̅ = 61.4 x̅ = 63.4
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Patient Emotions
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x̅ = 56
McGill QoL (Psychological distress subscale)
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.53
VAS:
Sela et al. (2002)
Pain intensity VAS
Males
Females
r = 0.73 r = 0.34 r = 0.05 r = 0.32 r = 0.16 r = -0.02
r = 0.39 r = 0.3 r = 0.23 r = 0.58 r =0.43 r =0.37
Frustration Anger Fear Exhaustion Helplessness Hopelessness
Rhondali et al. (2013) (42)
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Body image dissatisfaction
Yennurajalingram et al (2011) (51)
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ESAS (Feeling of wellbeing subscale)
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(6)
ESAS (Pain subscale)
r = -0.05
ESAS (Pain subscale)
r = 0.25
Patient Physical Functioning Activities of Daily Living
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.46
WHOQOL BREF (Physical subscale)
Mendes et al, (2014)(36)
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 47.9 x̅ = 50.9 x̅ = 55.5 x̅ = 51.3
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Patient Perception of Care Yamagishi et al. (2012) (47)
Pain intensity, worst pain in 24hrs
r = - 0.27
Satisfaction with medical care
Yamagishi et al. (2012) (47)
Pain intensity, worst pain in 24hrs
r = - 0.26
Mendes et al, (2014)(36)
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 60.9 x̅ = 62.2 x̅ = 63.8
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 74.8 x̅ = 74.9 x̅ = 77.4
McGill QoL (Existential subscale)
Patient pain rating
Aubin et al. (2006) (22)
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Intervention
Redinbaugh et al. (2002) (38)
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Patient Knowledge
Mendes et al, (2014)(36)
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WHOQOL BREF (Environmental subscale)
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WHOQOL BREF (Social relationships subscale)
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Patient Other QoL Domains
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Perceived quality of palliative care
x̅ = 61.3
x̅ = 70.7
r = - 0.70
Effect size baseline to two weeks Pain knowledge
Effect size baseline to four weeks
r = 0.33 (intervention) r = -0.10 (control)
Average pain intensity
r = 0.38 (intervention) r = 0 (control)
Maximum pain
r = 0.44 (intervention) r = 0.27 (control)
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Lovell et al 2010(33)
Average pain
r = 0.57 (intervention) r = 0.005 (control)
Worst pain
r = 0.30 (intervention) r = 0.07 (control)
Keefe et al (2005)
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Intervention
Effect size baseline to follow up
Effect size baseline to follow-up
(28)
r = 0.04 (intervention) r = - 0.04 (control)
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Usual Pain intensity
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Intervention
Carer Factors Carer knowledge of pain management
Carer Burden
Patient pain rating
r = -0.05
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.48
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.59
Redinbaugh et al. (2002) (38)
Patient pain rating
r = -0.15
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Disparity between patient and carer pain rating
r = 0.05 (intervention) r = 0.23 (control)
Redinbaugh et al. (2002) (38)
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Carer Psychological Distress
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Worst Pain intensity
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Screening
Records screened (n =720)
Records excluded (n = 556)
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Identification
Records identified through database searching (n = 720)
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• • •
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Full-text articles assessed for eligibility (n = 164)
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Included
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Eligibility
•
• • • • •
Studies included in synthesis (n = 10)
•
Not an advanced cancer sample No pain variable reported Inpatient sample Questionnaire development Qualitative study
Full-text articles excluded (n =154) Not advanced cancer (4) No pain variable (15) Inpatient sample (41) Questionnaire development (4) No assessment of relationship between pain and patient/carer factors (76) Review or discussion article (14)
Figure 1. PRISMA flow diagram of studies retrieved and reviewed at the various stage
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Table 1. Search strategy
(“cancer pain”mc OR “pain management (Iowa NIC)” mc OR “breakthrough pain” mc OR “pain control (Saba CCC)”e/mc) AND (“advanced cancer” OR “cancer patients” mc OR “end stage cancer” OR “terminally ill patients e/mc OR “terminal cancer”) AND (“palliative care”mc OR “hospice” OR palliative nursing”mc OR “terminal care”e/mc OR “home nursing” OR “caregivers”mc OR “home health care” e/mc)
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CINAHL
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(“caner pain” OR “breakthrough pain” OR “pain management”) AND (“advanced cancer” OR “end stage cancer” OR “terminal Web of Science cancer” OR "neoplasm metastasis") AND ("palliative care" OR "terminal care" OR "end of life care" OR "home care" OR "family caregiver" OR "carer" OR “supportive care” OR "home health care")
Key: mc= major concept, e= explode,
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Medline
(cancer pain” OR “pain management” e/f OR “breakthrough pain” e/f) AND (“advanced cancer” OR “end stage cancer” OR “terminal cancer”) AND (“palliative care”e/f OR “palliative medicine” e/f OR “home care services”e/f OR “home nursinge/f OR “caregivers”e/f OR “supportive care” OR” terminal care” e/f)
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Key: e= explode, f= focus
S0885-3924(17)30417-7
DOI:
10.1016/j.jpainsymman.2017.08.012
Reference:
JPS 9554
To appear in:
Journal of Pain and Symptom Management
Received Date: 4 May 2017 Revised Date:
15 August 2017
Accepted Date: 15 August 2017
Please cite this article as: Smyth JA, Dempster M, Warwick I, Wilkinson P, McCorry NK, A systematic review of the patient and carer related factors affecting the experience of pain for advanced cancer patients cared for at home, Journal of Pain and Symptom Management (2017), doi: 10.1016/ j.jpainsymman.2017.08.012. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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A systematic review of the patient and carer related factors affecting the experience of pain for advanced cancer patients cared for at home John A Smyth DClinPsych1 Ian Warwick MB BCh2 Pauline Wilkinson FRCP2 Noleen K. McCorry PhD3
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Martin Dempster PhD1
School of Psychology, Queen’s University Belfast, UK
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Marie Curie Hospice, Belfast, UK
3
Centre of excellence for Public Health Northern Ireland, Queen’s University Belfast, UK
Corresponding author:
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1
Dr Martin Dempster, School of Psychology, Queens University Belfast,18-33 Malone Rd. Belfast, BT9 5BN, UK Email: [email protected]
No. of tables: 3 No. of figures: 1 No. of references: 68
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Word count: 3661
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Phone: +44 28 90975547
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This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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Abstract
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Context: Effective pain management is a priority in the palliative care of advanced cancer patients. A body of research is emerging examining the factors that influence the management and experience of pain for such individuals. Identifying such factors should allow for the development of targeted interventions to improve pain management in the home while ultimately reducing unnecessary suffering for the patient. Objectives: To identify relevant patient and carer related factors which have an effect on the pain experienced by advanced cancer patients cared for at home.
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Method: Systematic review following the PRISMA statement guidelines. Studies were retrieved from the CINAHL, MEDLINE and Web of Science and assessed independently by two reviewers with discrepancies assessed by a third prior to quality assessment and data extraction. A narrative synthesis was produced.
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Results: Our search strategy produced 720 hits of which 10 studies were retained for the final analysis. The factors identified included: carer knowledge of cancer pain management, carer burden, carer and patient distress, pain rating disparity, patient wellbeing, patient depression, patient affective experience, patient body image and satisfaction with palliative/medical care. All factors identified are supported by only some evidence with many having only been explored in single studies.
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Conclusions: There is a lack of quantitative research in the area of factors influencing the experience of pain for advanced cancer patients cared for at home. Such findings would be useful in developing theories of change that would underpin interventions aimed at improving pain outcomes for this population. Keywords: Pain management, Advanced Cancer, Systematic review
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Running Title: Patient and carer related factors in pain
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Introduction Providing palliative care in the home can be challenging, especially when it comes to achieving sufficient control over pain, with only one third of patients
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believing this to be achievable(4,5) . In fact, some reports note that as many as 28% of patients die in significant pain, despite the means for a pain free death being
available(6). A high level of skill and knowledge is needed to confidently provide
adequate pain management, the onus of which often lies with unpaid carers who feel
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ill-equipped for this task(5,7). Failure to follow prescribed pain management regimes
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at home is common with some studies reporting non-adherence rates as high as 70%(8). This can result in inadequate pain control, unnecessary suffering for the patient, and increased health care costs(9-11).
In recent years, efforts have been made to discover salient patient and carer related factors influencing the pain experienced by advanced cancer patients. One
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review noted that a large proportion of patients were reluctant to report pain or take pain medication due to attitudinal barriers including fears relating to addiction and side effects(12). Two major limitations of such reviews are apparent: they often fail to
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examine the effects such barriers actually have on the pain experienced by the
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patient, or they restrict the populations examined to inpatients.
Other psychological variables apart from attitudinal barriers have also been
shown to be related to the patient’s experience of pain. A patient’s mood as well as cognitive abilities related to capacity, such as executive functioning, can have an impact on the pain experienced by such individuals, both directly and indirectly (14,15).
In the home setting, as the health of the person with advanced cancer deteriorates, they become more reliant on others to assess the level of pain they are
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experiencing and thus the level of analgesia required. For pain management to be effective, a carer’s estimations of the pain experienced by the patient must be congruent with the patient’s own subjective experience to avoid under or over use of
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analgesics. Studies have found that incongruence between such estimates and actual reported pain are more likely in cases where both the patient and carer report poor quality of life and higher reported levels of carer burden (16,17).
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A recent review found that approximately half of the interventions addressing pain in people with advanced cancer were ineffective (18). The majority of such
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interventions lacked a strong evidence base and only focused on improving knowledge of pain management without attempting to address other salient factors.
Guidance from the UK Medical Research Council states that evidence based models are necessary prerequisites to the development of tailored interventions, to
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highlight the factors that should become the focus of any complex intervention (19). Before such models can be designed and tested, a clearer picture of the factors related to the experience of pain for the advanced cancer patient cared for at home
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is needed. Previous reviews in this area have been conducted, however they have not addressed carer related factors (20) or were purely qualitative in nature (21).
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The aim of this review is to identify the patient and carer factors that are related to pain experienced among people with advanced cancer cared for at home. For the purpose of the review, patient and carer factors were defined as any factor which relates to a patient’s or carer’s psychological or physical capacity to engage in pain control. This also included any cognitive processes related to directing one’s behavior or any affective responses. This definition was derived from a recent model of health related behaviours(1).
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Methods The review is reported in line with a modified version of the Preferred Reporting Items for Systematic Reviews and Meta Analyses statement guidelines (PRISMA)(2).
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The style is modified as this review was not aimed at assessing interventions directly. Eligibility criteria
Quantitative research articles published in a peer reviewed journal in the English language.
•
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•
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Studies were deemed eligible for the review if they met the following criteria:
Study samples had to include individuals with advanced cancer (in receipt of the majority of their care in the home setting), and/or their unpaid carer(s). Advanced cancer was defined broadly as a person with
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a diagnosis of cancer and at least one of the following: Karnofsky Performance Status of 50 or less; Eastern Co-operative Oncology Group score of 3 or more; life expectancy of 6 months or less; cancer unlikely
•
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to be cured; in receipt of palliative care. Include an estimate of pain experienced. Within the relevant literature
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there is no gold standard method for assessing pain for this population, so this was defined as any self-report or validated measure of pain; pain level experienced or satisfaction ratings of pain control.
•
Assess the relationship between pain experienced and one or more patient and/or carer factors.
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Information sources Articles were sourced from the following databases: Medline, CINAHL and Web of Science. The search was inclusive of all articles from the earliest available
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date until March 2016. Search strategy
The exact search strategies used in the three databases are given in Table 1.
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To devise this strategy, relevant search terms were adopted from the key terms quoted in studies identified during a scoping exercise. These terms were then
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entered into the three databases. Any other related terms identified were then added to the search strategy. This draft search strategy was reviewed by two researchers who were familiar with the area of palliative care and a subject librarian, who ensured the databases were used correctly. At this stage several terms were removed as they were deemed repetitive while others were added. Medical Subject
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Headings were utilized in CINAHL and Medline databases. Differences in the specific search strategies reflect the different terminology used in the various databases.
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Study selection and data collection
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Due to the large number of articles retrieved in the search the eligibility criteria were initially applied, independently by two assessors (JS,IG), to the articles’ titles and abstracts. The next stage of selection involved reviewing the full text articles. Articles reviewed at this stage included those which both assessors agreed should be included due to meeting the eligibility criteria or in situations where there was inadequate information in the title and abstracts to warrant a decision. In instances where the assessors disagreed, a third assessor (MD) decided if the article should go forward for full text review. At this stage the full text of articles were reviewed,
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independently by the same two assessors with the third assessor deciding any disagreements. Finally, a quality assessment was applied to those articles which remained after full text assessment, using an adapted version of the Quality
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Assessment Tool for Quantitative Studies developed by the Effective Public Health Practice Project (3). This tool was developed for use with systematic reviews of
effectiveness in the area of public health and provides a score indicating if a study is
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of strong, moderate or weak quality. This adapted tool covers quality criteria of selection bias, validity and reliability of data collection tools, withdrawals and
Results Data extraction and analysis
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dropouts, sample size and if a priori power calculations had been made.
A total of 720 articles were identified and 556 of these articles were excluded
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due to duplication and failure to meet the eligibility criteria. The remaining 164 articles had their full text scrutinized. A further 154 articles were excluded at this stage. Thus a total of 10 studies were included in the synthesis (see Figure 1). The
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characteristics of these studies are outlined in Table 2.
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Study characteristics and quality assessment Of the studies retained, three were considered to be strong in quality;(6,33,51) a
further four were of moderate quality,(22,25,36,42) while three studies were considered weak.(28,38,47) Seven of the ten studies used measures which had previously been assessed as both reliable and valid. Of the other three studies, two did not use a psychometrically validated measure and one had moderate ratings due to not reporting reliability. No study was found to be strong with regards to selection bias.
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Six studies were classed as moderate in this area with the remaining four studies being classed as weak. Only two studies used random selection of the sample whereas all other studies sampled from the desired population in a systematic
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manner. High completion rates of greater than 80% were reported in only one study, another reported rates between 60 to 79 %, one further study reported below 60%
participation whereas for five studies participation rates were not reported or could
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not be calculated. Sample size varied considerably across the studies. Five studies had samples in excess of 100 participants; a further four had between 50-99
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participants included in their final analysis, whereas only one study had a sample size less than 50. Only one study provided a sample size calculation based on power considerations. Review findings
Carer factors
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The results extracted from the included studies are reported in Table 3.
Only one of the included studies (38) examined the relationship between carer
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distress and the patient’s own pain rating. A medium sized positive correlation was found (r = 0.48). Related to carer distress, this study also examined the relationship
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between pain and carer burden. A stronger positive correlation was found (r = 0.59). This same study was the only one included in the review that assessed the relationship between patient pain experienced and disparity between this and their carer’s estimation of pain experienced. Disparity scores were calculated as the difference between the patient’s pain rating and the carer’s estimation item from the Family Pain Questionnaire (FPQ) (24) A small negative correlation (r = - 0.15) was found.
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Patient factors Yennurajalingam and colleagues (51) examined the impact of a number of covariates as predictors of pain scores on the Edmonton Symptom Assessment
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Scale (ESAS) (43) . This analysis found that “feelings of wellbeing” were weakly related to pain experienced (r = - 0.05). In line with these results, a contrasting
concept, ‘psychological distress’, was assessed by Redinbaugh et al. (38). A large
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positive correlation was reported (r = 0.53) between distress and pain ratings. Psychological aspects of quality of life and their relationship to pain was also
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reported by Mendes et al (36). Participants were separated into four groups based on the level of pain experienced (no pain, mild, moderate, intense). Only the means for each group’s scores on the various domains were reported. As seen in Table 3, the no pain group reported the highest psychological quality of life followed by the moderate pain group, mild pain group and finally the intense pain group. A fourth
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study by Grassi et al (25) focused on psychological wellbeing and distress however this study was concerned specifically with patients’ mood using the Hospital Anxiety and Depression Scale (HADS) (27) as a measure of depression. From the reported
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results it was possible to calculate the effect size between pain scores and the difference between those considered depressed and those not. A small positive
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effect was found (r = 0.15). Sela et al. (6) examined the relationship between pain and aspects of psychological wellbeing. Specifically they examined if there was a relationship between a number of specific emotions and pain intensity. This study also analyzed results according to gender and found males to have a strong positive correlation between pain intensity and frustration (r = 0.73) with weak positive correlations being reported for anger (r = 0.34) and exhaustion (r = 0.32). For females the strongest correlation was found between pain intensity and exhaustion (r
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= 0.58). Moderate positive correlations with pain intensity were found for helplessness (r = 0.43), frustration (r = 0.39), hopelessness (r = 0.37) and anger (r = 0.30).
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Rhondali et al (42) also looked at patient body image and its impact on pain
experienced, based on scores from the ESAS (48). A small positive correlation was found between these pain scores and body image dissatisfaction scores as
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measured by the Body Image Scale (BIS) (44) (r = 0.25).
Other patient factors identified include activities of daily living, which showed a
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moderate relationship with pain (r=0.46) in a single study, (38) and existential quality of life, which showed a large relationship with pain (r=0.70) in the same study. Perception of care
One study by Yamagishi et al (47) examined the relationship between worst
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pain experienced in the last 24 hours, quality of palliative care received and satisfaction with medical care received. Both factors showed small negative correlations with pain intensity (quality r = - 0.27, satisfaction r = -0.26).
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Knowledge of pain management
Three studies examined the effects (on patient experience of pain) of
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interventions designed to improve knowledge of pain management. These studies do not directly provide information about the association between knowledge and pain. Although it is relevant to note that interventions aimed at improving knowledge about pain have an effect on patient perception of pain (which indicates a potential association), no conclusions can be drawn about associations when the intervention does not have the intended effect.
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Lovell et al (33) demonstrated a large effect for their interventions on average pain intensity and a moderate effect for worst pain experienced. Aubin et al (22) also found a large effect on average pain intensity for their intervention and for maximum
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pain experienced. Another intervention study (28) aimed at improving knowledge of pain management using a partner guided training protocol. The intervention arm
showed marginally greater improvements compared to the control arm for ‘weeks
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‘weeks worst pain’ the control arm was superior.
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usual pain intensity’. However when pain experienced was measured based on
Discussion
This review was conducted to assess what patient and career related factors have been shown to be related to pain experienced by advanced cancer patients cared for at home. Only a small number of factors were identified with studies
Patient Knowledge
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showing inconsistent results.
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There is a lack of research available focusing on the relationship between knowledge of pain management and pain outcomes for advanced cancer patients.
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This begs the question why efforts have been made to develop interventions when the relationship in question remains unclear. If a lack of knowledge leads to poorer pain related outcomes then one would expect to find much greater efficacy for knowledge based interventions than previous reviews have (55-57) . Although some authors have pointed to a lack of heterogeneity amongst educational interventions as the source of such inconsistent findings (55), one must consider that there is a lack of a strong theoretical basis for these interventions due to the lack of a thorough examination of the critical factors. Our review mirrors this inconsistency. In the one
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study which looked at knowledge directly (38) a small effect was found between carer knowledge of pain management and pain experienced. On the other hand, one of the other intervention studies (22) included here found a large positive effect for
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improvements in pain experienced, measured in a number of ways for participants whose knowledge improved following the intervention whereas the control group
actually showed a decrease in knowledge and no improvement in pain experienced.
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Conclusions drawn from this study must be done so with caution due to the use of
non-equivalent comparison groups which differed significantly at pre intervention and
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potential for selection bias. Furthermore the interventions used appear to differ greatly. Therefore, no concrete conclusions can be drawn regarding the impact, or indeed the associations that carer knowledge of pain management has on pain outcomes in this population. Patient well-being
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A number of patient related factors were identified including psychological distress, which was noted in one study (38) to have a medium size positive correlation with pain experienced. This finding was further supported by another study, (25) which
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reported a small positive correlation between scores on the HADS (27) depression subscale and pain intensity. Whilst these constructs cannot be considered identical,
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they are related. The former study is, however, hampered by its small sample size. Another study (6) examined the relationship between psychological distress and pain and found a range of relationships from weak to strong. Again one must be cautious in comparing the findings to those previously mentioned as this study relies on very simplistic measures of the various emotions (Visual Aanalogue Scales for each emotion).
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Another psychological construct, body image, was found to have a small correlation with pain intensity (42) and showed a strong association with depression. Again this relationship was only supported by findings from a single study which,
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although it claims to be prospective in design, this is only partially true as patients were required to retrospectively recall their satisfaction with their body image prior to entering palliative care.
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In summary these findings indicate that there is no strong evidence about the relationship between psychological distress and severity of pain experienced by
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people with advanced cancer, partly due to the lack of consistency of assessing psychological distress. Other research suggests mood and wellbeing may mediate other processes which in turn impact pain. As Li et al (15) noted, the advanced cancer patient’s mood may impact on aspects of their cognitive functioning such as executive functioning abilities and subsequently their quality of life. This review was
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unable to conclusively indicate the true impact of mood or psychological wellbeing on pain, and it may be the case that a causal or reciprocal relationship exists between such distress and pain.
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Systemic factors
Only one study can be considered to examine the relationship between
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systemic factors and pain. (47) Less pain was seen to be related to: higher quality palliative care, and greater satisfaction with the medical care received. Due to the location of this study in a non-western society in Japan where individuals are often seen to have “stoic” attitudes towards pain (65,66) this may limit the comparisons that could be made to patients in Western countries .
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Carer factors Three additional carer factors were identified by this review, two of which (burden and distress) were shown to have medium size correlations with patients’
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reported pain levels. Both of these factors were assessed by only one study (38)
which was cross-sectional in nature and had a small sample size. This study also noted that there was a relationship between higher carer distress and greater
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inaccuracy in carer estimates of pain. Although this study found no relationship
between the disparity scores of carer’s estimation of patient pain with actual levels of
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pain experienced, such disparities may be important, especially towards the latter stages of cancer where patients are reliant on carers to provide accurate estimations and adapt treatment accordingly. For example it has been noted elsewhere that high disparity was related to higher levels of pain experienced (59) and poorer quality of life for both patient and carer (60,61).
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Again the lack of research in the area of carer burden, distress and inaccurate pain estimation for advanced cancer patients in the home setting must be addressed before efforts are made to develop interventions targeting such variables. Research
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exists which implicates such factors for those in inpatient settings but it is important to consider the effects of complex interactions which exist between the carer and the
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patient (62). Additional variables (such as beliefs (63)) may exist in the home setting which could potentially complicate such interactions.
Summary and implications of findings The conclusions derived from this review must be considered in light of its limitations. The use of a third reviewer to analyze disagreements between the two
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independent reviewers at the screening stages helped to reduce bias although there was a less than perfect inter-rater reliability score. The review also focused solely on the direct experience of pain reported by the patient, and so cannot make any claims
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about related variables such as pain interference. The emphasis of this review was to identify the patient and carer related
factors that have a potential relationship to the pain experienced by advanced cancer
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patients cared for at home. A small number of studies examined such relationships, with psychological distress being the most commonly studied factor included in the
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review.
Clearly there is a need for more research in this area before any conclusions can be drawn that might benefit the design of interventions. Specifically, we recommend that:
An agreed measure of patient distress is used among people with
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•
advanced cancer, to enable comparison of studies focusing in this area and which would be a useful outcome measure in any future intervention study (as per the recommendations of the Core Outcome
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Measures in Effectiveness Trials (COMET) Initiative (http://www.cometinitiative.org/).
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•
Further research is undertaken to determine whether there are modifiable patient and carer factors that are related to pain severity. Research with a longitudinal design would be helpful in allowing some estimation of the directionality of any relationships found.
•
Future interventions aimed at improving the experience of pain for patients need to be based on a theory of change that is evidence
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based, to increase the likelihood of effectiveness and reduce opportunity costs. As noted previously there is a move within wider health care provision to shift the
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location of care from institutional settings to a person’s own home (68) in line with
patients’ own preferences (4). The current review calls into question the legitimacy of such interventions in the home setting as it cannot be assumed that the factors
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influencing pain outcomes are identical for both inpatient and outpatient settings.
Identifying such factors for the home setting should be considered the first step in
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developing clinical interventions to improve pain outcomes in line with
recommendations by the UK Medical Research Council (19). As briefly alluded to previously, it is unlikely that the factors simply have a linear causal relationship and are more likely to affect pain outcomes through complex interactions with a number of variables which could not be identified through the nature of this review eg.
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barriers due to beliefs around opioid use (12). Utilizing behavior change models, such as the Capability, Opportunity, Motivations and Behaviour (COM-B) model, can be a useful framework for identifying factors worthy of investigation, that can then be
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matched with an appropriate intervention technique (1) .
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Table 2. Description of the studies included in this review Sample n
Setting
Age: M (SD) years
Cancer Diagnosis (% of sample)
Measure of pain experienced (completed by patient)
Lung 54 Breast 11 Digestive 22 Genital-urinary 5 Other 8
Brief Pain Inventory(23)
Gender % Quasiexperimental, pretest/post-test, nonequivalent group
n = 41
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Aubin et al. (2006) (22)
Age: 64.6(11.5)
Four community based healthcare centres, Quebec, Canada
Male: 59%
Cross sectional survey design Oncology Home Care Service, Ferrara, Italy
Keefe et al.
n = 86
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Mean time since diagnosis: 17.6 months
Age: 66.8(11.6)
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Grassi et al. (1996) (25)
Feasibility study, randomised control
Male: 58% n = 78
Relevant Patient/carer factors
Overall Quality Assessment
Family Pain Questionnaire (FPQ) (24) knowledge subscale
Weak
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Study design
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Ref
Intervention: Two hour educational intervention on the assessment and management of pain including the use of a video guidance, pain diary and tailored guidelines for specific patient pain management recommendations
Lung 29 Breast 14 Gastrointestinal 15 Genito-urinary 14 Other 28
European Organization for Research Treatment of Cancer Quality of Life Questionnaire(26) Pain subscale
Hospital Anxiety and Depression Scale(27)
Moderate
Lung, breast and prostate 56
Brief Pain
Intervention: 3 home based partner and patient training
Weak
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Randomised control trial
n =185
Oncology and radiation outpatient clinics, palliative care clinics and community services, New South Wales, Australia
Home Palliative Care service, Uberlandia, Brazil
Redinbaugh et al. (2002)(38)
Cross sectional survey design
Wisconsin Brief Pain Inventory(34)
Intervention: Booklet and video based educational intervention for cancer pain management
Strong
Male: 43%
n = 56
Gastrointestinal 31 Respiratory 14 Genito-urinary 14 Head/neck 11 Gynecological 9 Breast 7 Other 14
Pain assessment scales numerical, verbal (yes or no) and analogue (mild, moderate, severe)
World Health Organization Quality of Life Measure Brief version(37)
Moderate
No information
Patient self-rated pain on a scale of 010 (0=no pain
Knowledge; extracted item ("how much pain relief is your family member
Weak
EP
Cross sectional survey design
Age: 62(SD not reported)
Age: 65.8(14.7)
AC C
Mendes et al. (2014) (36)
Breast 25 Lung 18 Prostate 11 Genito-urinary 9 Bowel 8 Other 29
Male: 56%
M AN U
Lovell et al. (2010) (33)
Inventory(23)
Male: 45%
n = 31 patient/carer
SC
Hospices and cancer centre outpatient clinics, New Hampshire, North Carolina, USA
Other 44
sessions in pain management facilitated by a nurse educator. Included cognitive behavioural coping strategies and supplementary written, video and audio resources.
RI PT
Age: 60.5(SD not reported)
trial
TE D
(2005) (28)
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dyads
10=extreme pain)
Patients Age: 64(16.3) Carers Age: 56.2(13.9)
SC
Male Patients 39%
Age: 54(14) Male: 42%
Gastrointestinal 22 Lung 22 Head/neck 14 Breast 10 Gynecological 8 Genito-urinary 5 Other 19
Edmonton Symptom Assessment System(43) Pain subscale
Body Image Scale(44)
Moderate
Pain intensity over the past two weeks,
VAS examining 6 affect dimensions (frustration,
Strong
Sela et al. (2002) (6)
Cross sectional survey design
AC C
EP
Outpatient supportive Care clinic, Texas, USA
n = 81
TE D
Cross sectional survey design
M AN U
Male Carers: 32%
Rhondali et al. (2013) (42)
currently experiencing") from the experience subscale of the Family Pain Questionnaire(24) McGill Quality of Life Scale(39) with pain items removed from the symptom subscale Carer psychological distress: Brief Symptom Inventory(40) Caregiver Burden Screen(41) Patient Activities of Daily Living Needs
RI PT
Two home hospice care services, Pennsylvania, USA
n = 111 Age:
Median(IQR) time since diagnosis: 2.3(1.2 - 4.7) years
Breast 26 Lung 25
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Yennurajalingam et al. (2011) (51)
Retrospective study of patients electronic medical charts following palliative care consultation intervention Outpatient supportive care clinic, Texas, USA
Male: 55%
n = 406 Age: 58(14) Male: 47%
Lung and head/neck 29 Breast 11 Gastrointestinal 17 Gynecological 7 Other 36
Edmonton Symptom Assessment System(43) Pain subscale
anger, fear, exhaustion, helplessness and hopelessness)
RI PT
Japanese Brief Pain Inventory(48)
SC
Age: 67(11)
Lung 26 Breast 17 Colon/rectum 15 Prostate 10 Stomach 9 Liver 5 Other 18
M AN U
Hospice outpatient clinics from four regions across Japan
n = 859
visual analogue scale
TE D
Cross sectional survey design
Male: 47%
Gastrointestinal 11 Genito-urinary 5 Gynecological 5 Other 28
EP
Yamagishi et al (2012) (47)
60.3(11.1)
AC C
Cancer pain and symptom control clinic, Canada
Patient perceived quality of palliative care: Care Evaluation Scale(50)
Weak
Satisfaction with medical care: 6 point single item satisfaction scale (1 very dissatisfied- 6 very satisfied) Edmonton Symptom Assessment System(43) Feeling of Wellbeing subscale
Strong
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Table 3.Summary of review findings
Patient/Carer Factor
Studies
Outcome
Findings
HADS (depressed/nondepressed)
Grassi et al. (1996) (25)
EORTC Symptom Scale (pain subscale)
r = 0.15
WHOQOL BREF (psychological subscale)
Mendes et al, (2014)(36)
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 63.6 x̅ = 61.4 x̅ = 63.4
SC
RI PT
Patient Emotions
M AN U
x̅ = 56
McGill QoL (Psychological distress subscale)
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.53
VAS:
Sela et al. (2002)
Pain intensity VAS
Males
Females
r = 0.73 r = 0.34 r = 0.05 r = 0.32 r = 0.16 r = -0.02
r = 0.39 r = 0.3 r = 0.23 r = 0.58 r =0.43 r =0.37
Frustration Anger Fear Exhaustion Helplessness Hopelessness
Rhondali et al. (2013) (42)
AC C
Body image dissatisfaction
Yennurajalingram et al (2011) (51)
EP
ESAS (Feeling of wellbeing subscale)
TE D
(6)
ESAS (Pain subscale)
r = -0.05
ESAS (Pain subscale)
r = 0.25
Patient Physical Functioning Activities of Daily Living
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.46
WHOQOL BREF (Physical subscale)
Mendes et al, (2014)(36)
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 47.9 x̅ = 50.9 x̅ = 55.5 x̅ = 51.3
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Patient Perception of Care Yamagishi et al. (2012) (47)
Pain intensity, worst pain in 24hrs
r = - 0.27
Satisfaction with medical care
Yamagishi et al. (2012) (47)
Pain intensity, worst pain in 24hrs
r = - 0.26
Mendes et al, (2014)(36)
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 60.9 x̅ = 62.2 x̅ = 63.8
No pain (n=26) Mild (n=10) Moderate (n=9) Intense(n=11)
x̅ = 74.8 x̅ = 74.9 x̅ = 77.4
McGill QoL (Existential subscale)
Patient pain rating
Aubin et al. (2006) (22)
AC C
Intervention
Redinbaugh et al. (2002) (38)
EP
Patient Knowledge
Mendes et al, (2014)(36)
M AN U
WHOQOL BREF (Environmental subscale)
TE D
WHOQOL BREF (Social relationships subscale)
SC
Patient Other QoL Domains
RI PT
Perceived quality of palliative care
x̅ = 61.3
x̅ = 70.7
r = - 0.70
Effect size baseline to two weeks Pain knowledge
Effect size baseline to four weeks
r = 0.33 (intervention) r = -0.10 (control)
Average pain intensity
r = 0.38 (intervention) r = 0 (control)
Maximum pain
r = 0.44 (intervention) r = 0.27 (control)
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Lovell et al 2010(33)
Average pain
r = 0.57 (intervention) r = 0.005 (control)
Worst pain
r = 0.30 (intervention) r = 0.07 (control)
Keefe et al (2005)
RI PT
Intervention
Effect size baseline to follow up
Effect size baseline to follow-up
(28)
r = 0.04 (intervention) r = - 0.04 (control)
M AN U
Usual Pain intensity
SC
Intervention
Carer Factors Carer knowledge of pain management
Carer Burden
Patient pain rating
r = -0.05
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.48
Redinbaugh et al. (2002) (38)
Patient pain rating
r = 0.59
Redinbaugh et al. (2002) (38)
Patient pain rating
r = -0.15
AC C
Disparity between patient and carer pain rating
r = 0.05 (intervention) r = 0.23 (control)
Redinbaugh et al. (2002) (38)
EP
Carer Psychological Distress
TE D
Worst Pain intensity
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RI PT
Screening
Records screened (n =720)
Records excluded (n = 556)
SC
Identification
Records identified through database searching (n = 720)
•
M AN U
• • •
TE D
Full-text articles assessed for eligibility (n = 164)
AC C
Included
EP
Eligibility
•
• • • • •
Studies included in synthesis (n = 10)
•
Not an advanced cancer sample No pain variable reported Inpatient sample Questionnaire development Qualitative study
Full-text articles excluded (n =154) Not advanced cancer (4) No pain variable (15) Inpatient sample (41) Questionnaire development (4) No assessment of relationship between pain and patient/carer factors (76) Review or discussion article (14)
Figure 1. PRISMA flow diagram of studies retrieved and reviewed at the various stage
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Table 1. Search strategy
(“cancer pain”mc OR “pain management (Iowa NIC)” mc OR “breakthrough pain” mc OR “pain control (Saba CCC)”e/mc) AND (“advanced cancer” OR “cancer patients” mc OR “end stage cancer” OR “terminally ill patients e/mc OR “terminal cancer”) AND (“palliative care”mc OR “hospice” OR palliative nursing”mc OR “terminal care”e/mc OR “home nursing” OR “caregivers”mc OR “home health care” e/mc)
M AN U
SC
CINAHL
RI PT
(“caner pain” OR “breakthrough pain” OR “pain management”) AND (“advanced cancer” OR “end stage cancer” OR “terminal Web of Science cancer” OR "neoplasm metastasis") AND ("palliative care" OR "terminal care" OR "end of life care" OR "home care" OR "family caregiver" OR "carer" OR “supportive care” OR "home health care")
Key: mc= major concept, e= explode,
TE D
Medline
(cancer pain” OR “pain management” e/f OR “breakthrough pain” e/f) AND (“advanced cancer” OR “end stage cancer” OR “terminal cancer”) AND (“palliative care”e/f OR “palliative medicine” e/f OR “home care services”e/f OR “home nursinge/f OR “caregivers”e/f OR “supportive care” OR” terminal care” e/f)
AC C
EP
Key: e= explode, f= focus