core aspects of satisfaction with pain management: cancer patients' perspectives

100 Journal of Pain and Symptom Management Vol. 39 No. 1 January 2010

Original Article

Core Aspects of Satisfaction with PainManagement: Cancer Patients’ PerspectivesSusan L. Beck, PhD, APRN, FAAN, Gail L. Towsley, PhD,Patricia H. Berry, PhD, APRN, Karen Lindau, MS,Rosemary B. Field, MS, APRN, ACONS, and Shantelle Jensen, BS, RNUniversity of Utah College of Nursing (S.L.B., G.L.T., P.H.B., K.L.), Salt Lake City, Utah; Nursing

Department (R.B.F.), Marymount Hospital, Garfield Heights, Ohio; and Nursing Department (S.J.),

Primary Children’s Medical Center, Salt Lake City, Utah, USA

Abstract

Context. The coexistence of high levels of satisfaction and high levels of painhas been perplexing.

Objectives. The aims of this study were to 1) describe patient expectationsrelated to the experience of cancer-related pain, 2) explore the cognitiveprocesses and meaning that underlie patient judgments about satisfaction anddissatisfaction with pain management, and 3) explore the discrepancies betweenratings of high satisfaction with pain management with high pain intensity.

Methods. The sample included 33 patients: 18 with advanced cancer and 15experiencing pain after a surgery for a cancer diagnosis. All patients hadexperienced ‘‘worst pain’’ of at least moderate intensity and were interviewed usingstandard pain measures from the American Pain Society Patient OutcomeQuestionnaire and open-ended questions about the underlying meaning of theiranswers. We systematically analyzed the transcribed qualitative data using NVivosoftware.

Results. Fifty-five percent of patients were females and were aged 25e78 years.Most (75%) were satisfied or very satisfied with their overall pain management. Keyfindings indicate that for some, the worst pain rating was often brief, even momentary.Most patients expected pain relief. Four key themes were important to the quality ofpain management: being treated right, having a safety net, being in a partnership withtheir health care team, and having pain treatment that was efficacious. Key aspects ofthe patient-provider relationship that mattered were how the nurses and doctorsbehaved toward them and how quickly they responded toreports of pain. For some, animportant factor was whether they had control of the amount of pain theyexperienced.

Conclusion. The findings inform measurement of patient satisfaction with thequality of pain management. J Pain Symptom Manage 2010;39:100e115. � 2010Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

This study was funded by a grant from the OncologyNursing Society Foundation.

Address correspondence to: Susan L. Beck, PhD, APRN,FAAN, University of Utah College of Nursing, 10

South 2000 East, Salt Lake City, UT 84112-5880,USA. E-mail: [email protected]

Accepted for publication: June 17, 2009.

� 2010 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

0885-3924/10/$esee front matterdoi:10.1016/j.jpainsymman.2009.06.009

mailto:[email protected]

Vol. 39 No. 1 January 2010 101Cancer Patient Satisfaction with Pain Management

Key Words
Cancer pain prevention and control, patient satisfaction evaluation, neoplasms, qualitativeresearch, quality
IntroductionMonitoring and improving outcomes of careare ever-increasing concerns for health care or-ganizations. Growing organizational interest inhow to effectively measure outcomes of care re-lated to pain management took on a new di-mension in the United States when the JointCommission published pain assessment andmanagement accreditation standards.1 In effectsince 2001, the standards strengthened organi-zational expectations related to pain assess-ment, management, and patient education.More specifically, the performance improve-ment standard addresses assessment of out-comes of care including ‘‘patient satisfaction’’and ‘‘the effectiveness and appropriateness ofpain management.’’ Thus, understandingpatient satisfaction related to pain managementis acknowledged as essential to providing effec-tive pain management for patients.

The measurement of patient satisfaction,however, has been complicated by the creationof what is essentially a paradox: the coexistenceof high levels of pain and high levels of patientsatisfaction. This, in turn, leads to questionsabout the construct validity of the measures ofpatient satisfaction with pain management. Un-til better measures are developed, there is anunfortunate possibility of concluding that pa-tient satisfaction with pain management is evi-dence of effective pain management. Thispossibility exists in some of the nursing reportcards that only consider satisfaction.2

The purpose of this study was to explore thereasons for this high pain-high satisfaction par-adox. The specific aims were to 1) describe pa-tient expectations related to the experience ofcancer-related pain, 2) explore the cognitiveprocesses and meaning that underlie patientjudgments about satisfaction and dissatisfac-tion with pain management, and 3) explorediscrepancies between patient ratings of painintensity and their satisfaction with pain man-agement. The resulting core concepts canserve as a guide to future measurement ofsatisfaction with the quality of cancer painmanagement.

Cancer-Related PainStudies of cancer pain prevalence indicate

that approximately 30%e50% of patients re-ceiving cancer treatment experience pain; prev-alence increases with advanced disease.3 Paincan be acute in nature, such as the pain experi-enced after surgery for cancer, or chronic andprogressive as disease advances. The past severaldecades of research document persistent painseverity and inadequate treatment of cancerpain across settings and populations, includingambulatory patients, postsurgical patients withcancer, and inpatients.4e22

Patient SatisfactionPatient perceptions are increasingly being

used to measure the quality of health care.23

The American Academy of Nursing Panel onQuality Health Care proposed that patient sat-isfaction to be included in one of their five cat-egories of nurse-sensitive outcomes: theperception of being well-cared for.24 Patientsatisfaction is the congruency between expec-tations of care and perceptions of the carereceived.25 High satisfaction with care is con-sidered a desired outcome and may influencedecisions to seek care, change providers ormedical plans, and adhere to prescribed treat-ment plans.26

The concept of measuring patient satisfac-tion with pain management emerged in the1990s. The Quality Assurance Committee ofthe American Pain Society (APS) proposedan approach to measure patient satisfactionas part of their first standards published in1991. Several investigators tested this approachand suggested ways to improve the measure-ment.16,19,21 In 1995, the APS publishedrevised standards that included a Patient Out-comes Questionnaire (POQ) with three itemsrelated to patient ratings of satisfaction. Sev-eral studies have been published using thePOQ;8,10,14,27e31 it remains the recommendedapproach although some investigators haveused open-ended questions or developed theirown tools. Additionally, the patient satisfactionitems in the POQ have been criticized because

102 Vol. 39 No. 1 January 2010Beck et al.

of their global nature; they are not recommen-ded as a sole measure of quality of care relatedto pain.31

The High Pain-High Satisfaction ParadoxRegardless of how patient satisfaction with

pain management has been measured so far, re-searchers have been surprised to learn that pa-tients with significant pain severity report highlevels of satisfaction. For example, in a study of72 medical-surgical patients in an urban hospi-tal, the mean worst pain score in the past24 hours was 7.56 (0e10 scale); more than 70%reported a worst pain score of 7 or greater.More than 70% reported that they were very sat-isfied (20%) or satisfied (51%) with their pain re-lief.19 This paradox has been documented inhospitalized patients, including postoperativepatients, in the emergency room, in oncologysettings, and in children as well asadults.9,10,14,16,21,30e38 McNeill et al.27 specifi-cally compared the pain severity between satis-fied and dissatisfied patients with severe pain.There was no significant difference for worstpain or pain now, but the dissatisfied patientsdid have a significantly higher average pain level(mean¼ 9.20) as compared with the satisfied pa-tients (mean¼ 8.1). The published correlationsbetween pain severity and patient satisfaction aregenerally inconsistent, ranging from �0.18 to�0.57 and variably significant.9,10,14,16,21,30,32e38

The pain satisfaction ratings are consistent withother satisfaction studies in that the data are of-ten skewed in a positive direction. Most of theaforementioned investigators have hypothesizedabout the reasons for the high pain-high satisfac-tion paradox. They suggested that currentapproaches may be measuring caring behaviors,expectations that pain cannot be relieved or thatit will have peaks and troughs, responsiveness torequests for pain medication, not ‘‘wanting to getanyone in trouble,’’ and bedside manner amongother factors.

Several studies have been conducted in thepast decade to explore this interesting paradoxin more detail. In a study by Idvall39 inSweden, 24 postsurgical inpatients, after com-pleting a questionnaire regarding pain man-agement and level of satisfaction, werespecifically questioned why they stated theywere satisfied with their care, even thoughthey reported high levels of pain intensity.The findings indicated that patients expected

to have some unrelieved pain and that it wasoften associated with movement, that the staffdid their best and were kind, and that thepatients did not want to be troublesome tobusy staff. Sherwood et al. questioned 241in-hospital patients, including those with post-operative pain and some cancer patients. Theyidentified four separate themes that affectedpatient satisfaction: ‘‘patient pain experience,patient views of providers, patient pain man-agement experiences, and pain managementoutcomes.’’29(p. 489)

Research exclusively focused on individualswith cancer is limited. In a qualitative study of19 cancer patients conducted in Finland, inves-tigators found that postoperative patients be-lieved pain after surgery was inevitable, thestaff tried to do a good job and should not beblamed, and patients did not want to bea bother. Participants emphasized the impor-tance of communication and kindness inaddition to a proactive approach to pain assess-ment as important to pain-related care.40 In an-other study by Dawson et al.10 in which 316primary care cancer patients were interviewed,it was found that high patient satisfaction was di-rectly linked to the ability of the doctor or thenurse to identify pain management as an impor-tant goal and experiencing a decrease in painover the past year. Lower levels of satisfactionwere associated with patients’ beliefs that thepresence of pain meant a decrease in qualityof life. Other factors identified that influencedpatient satisfaction included perception of ef-forts by the primary care physician, willingnessto take pills, not wanting to be a bother, a beliefthat pain is inevitable, and pain had changedwith medication. A qualitative component rein-forced the importance of the patient-providerrelationship in satisfaction.

Although there is a growing body of evidencerelated to the high pain-high satisfaction para-dox, only one has specifically addressed the is-sue in individuals with cancer in the UnitedStates and the focus was on primary care.10

Thus, a qualitative approach was selected to fur-ther understand the expectations that cancerpatients have for the pain experience and painrelief and to explore the cognitive meaningsthat may be influencing their interpretationand responses to questions about their satisfac-tion. Such findings can lead to development ofimproved ways of measuring satisfaction.


Research shows that the paradox of patientsatisfaction with unrelieved pain exists formultiple types of pain populations, yet the ex-pectations may be very different. Patients un-dergoing surgery for cancer might expect toexperience pain and know that it would gradu-ally improve; patients with advanced cancermay be uncertain about what to expect, maynot understand the cause of the pain, andmay fear progressive unrelieved pain. Expecta-tions related to pain management and painrelief are not known and would clearly influ-ence satisfaction.

Theoretical FrameworkThe theoretical underpinnings that are

guiding this study are based in disconfirmationtheory, also referred to as expectations-perfor-mance theory.25 The theory, which was devel-oped within the field of social psychology,has been extensively applied to the study ofconsumer satisfaction.41 In disconfirmationtheory, satisfaction is conceptualized as the dif-ference between what a consumer expects toreceive and his or her perception of what wasactually received. Thus, if the consumers’expectations are confirmed, satisfactionresults. Disconfirmation results when the prod-uct performance does not meet the expecta-tions (negative disconfirmation) or whenperformance exceeds expectations (positivedisconfirmation). The key concept from thistheory, which guided this study, is that expecta-tions and performance form the referencepoint from which to assess satisfaction.

MethodsThis exploratory qualitative study combined

a structured questionnaire to measure painintensity and satisfaction with a follow-upface-to-face interview using naturalistic inquiryto gather more in-depth information to clarifyperplexing quantitative data.

Sample and SettingTo allow for a greater understanding and

comparison of the expectations related totwo very different types of pain experiencesin cancer patientsdchronic progressive can-cer-related pain and acute pain after surgeryfor cancerdwe included 1) patients with

advanced cancer who experienced peak can-cer pain (i.e., the pain at its worst in the last48 hours) of at least a moderate intensity ($4on a 0e10 scale), or 2) patients who experi-enced peak postoperative pain (i.e., the painat its worst in the past 48 hours) of at leasta moderate intensity ($4 on a 0e10 scale).In addition, all patients were English speakingand physically and mentally able to participate.Patients with primary chronic pain not relatedto cancer (e.g., chronic low back pain or ar-thritic pain) and without concurrent cancerpain were excluded.

The study was approved by the University ofUtah Institutional Review Board. All patientssigned a written informed consent before par-ticipation. Advanced cancer patients were re-cruited from the ambulatory care settings ofthe Huntsman Cancer Institute and the Uni-versity of Utah Radiation Therapy Depart-ment. Postoperative patients were recruitedfrom the inpatient settings of the Universityof Utah Hospitals and Clinics and included pa-tients who underwent surgery for cancer thatrequired general anesthesia. Interviews wereconducted in a setting convenient for the pa-tient and included a private setting in theclinic, their home, a long-term care or assistedliving facility, or the patient’s hospital room.

Survey and Interview GuideEach patient completed survey items to mea-

sure aspects of their pain experience and satis-faction with pain management as provided bythe nurses, doctors, and overall. All itemswere selected from the APS POQ.19,42 Theitems selected from the POQ included itemsfrom the Brief Pain Inventory (worst pain in-tensity, percent pain relief, and amount oftime in severe pain),43 as well as three items re-lated to satisfaction. The satisfaction items arenumeric scales with verbal descriptors from 1(completely dissatisfied) to 6 (completelysatisfied).

We developed a semi-structured interviewguide based on disconfirmation theory. Theguide included specific questions related toexpectations about pain before diagnosis, atthe time of diagnosis, and at the presenttime. The guide also probed the rationalefor patient responses to the satisfaction items(Table 1). The interview guide was tailoredto the sample (i.e., advanced cancer vs.

Table 1Example From Interview Guide Related to Nursing Care


postoperative) and the responses to the satis-faction questions. As needed, interviewersprobed areas that emerged from the interviewsthat were relevant to the study aims. The inter-view guide was reordered several times to bestcreate a flow that would allow patients to re-flect on their responses to questions about sat-isfaction. Interviews were recorded andtranscribed verbatim. Interviewer notes wereused to supplement inaudible portions ofthree tapes. One participant was unable tospeak because of a tracheostomy and choseto write his responses on the interview guide.

AnalysisQuantitative items were summarized descrip-

tively (range, mean, standard deviation [SD]).Qualitative analysis followed classic proceduresoutlined by Miles and Huberman44 for data re-duction, data display, and drawing conclusions.The unit of analysis included phrases or senten-ces that conveyed one specific idea. Complexdata bits were double coded so as not to losethe entire context of the response. The initialcoding approach was guided by the theoreticalconcepts of expectations and performance as re-flected in the interview questions. The first twointerviews were analyzed by two investigators to

generate an initial coding scheme. All interviewswere then systematically coded by research teammembers using NVivo45 software (QSR Interna-tional Pty. Ltd., Doncaster, Victoria Australia) tomanage the data analysis. The principal investi-gator reviewed the transcribed interviews andcoding reports to identify themes, overarchingconstructs represented in the data. The resultsare presented in a narrative that explores eachtheme and its key features using patientquotations.

ResultsSample Characteristics

The sample included 33 interviews with ad-vanced cancer patients (n¼ 18) and postsurgi-cal cancer patients (n¼ 15). Patients wererecruited until data saturation occurred. Inthis recommended approach to sampling inqualitative research, a relatively small sample isneeded before it becomes apparent that furtherinterviews are not adding to what was alreadyfound in the previous interviews. The demo-graphic and clinical characteristics are summa-rized in Table 2. Patients were 54.4% femaleand had a mean age of 53.7 years (range25e78 years). The advanced cancer group

Table 2Demographic and Clinical Characteristics of the Two Groups in the Study Sample (n¼ 33)

Characteristic

Advanced Cancer (n¼ 18) Postsurgical (n¼ 15) Total (n¼ 33)

n % n % n %

GenderFemale 7 38.9 11 73.3 18 54.5Male 11 61.1 4 26.7 15 45.5

Race/ethnicityNon-Hispanic white 16 88.9 14 93.3 30 90.9Native American 1 5.6 1 3.0Hispanic white 1 6.6 1 3.0Multiple: African American/Native American 1 5.6 1 3.0

Primary siteBreast 5 27.8 0 0.0 5 15.2Cervical/uterine 0 0.0 5 33.3 5 15.2Colorectal 1 5.6 4 26.7 5 15.2Prostate 4 22.2 0 0.0 4 12.1Ovarian 0 0.0 2 13.3 2 6.1Sarcoma 2 11.1 0 0.0 2 6.1Esophageal 1 5.6 1 6.7 2 6.1Othera 5 27.8 3 20.0 8 24.2

Age (years)Mean 58.22 48.20 53.67SD 17.27 11.60 15.59Range 25e78 31e70 25e78

aIncludes one case each of multiple other primary sites.


(mean¼ 58.22) was on average 10 years olderthan the postoperative group (mean¼ 48.20).Main diagnoses included breast (15%), cervi-cal/uterine (15%), and colorectal (15%) can-cers. The postoperative group had morecolorectal and gynecologic cancers than the ad-vanced cancer group.

Pain and Satisfaction RatingsThe responses to the structured items re-

lated to pain and satisfaction are summarizedin Tables 3 and 4. Worst pain intensity in thepast 24 hours ranged from 2 to 10 (one patientfelt his pain had exceeded the scale but wasscored 10), with a mean of 6.91 (SD 2.42).The postoperative group reported significantlyhigher worst pain intensity than the advancedcancer group; they also reported higher painrelief. Pain was moderately to severely trou-bling for 63.7% of patients. Twenty-two per-cent of the advanced cancer group reportedsevere pain frequently or constantly as com-pared with 6.7% of the postoperative group.Eighty-three percent of the advanced cancergroup reported being very satisfied or satisfiedwith their pain management, as comparedwith 66.7% in the postoperative group.

Satisfaction with pain management was re-ported higher in regard to nursing care thanmedical care. Notably, four patients, three ofwhom were from the postoperative group, de-clined to rate their physicians.

ExpectationsExpectations are critical to judgments about

satisfaction. The interviewers explored expec-tations related to pain before diagnosis, atthe time of diagnosis, and at the presenttime. In reflecting on the time before diagno-sis, responses ranged from no previous experi-ence or expectation to a vivid recounting ofa close other who had recently died in pain.Many participants related a story of a familymember, friend, or neighbor with cancerwho had died in pain. Terms used to describethese experiences reflected suffering andincluded pain that was ‘‘severe,’’ ‘‘miserable,’’and ‘‘excruciating.’’

Expectations at the time of diagnosis variedby whether or not pain was one of the present-ing symptoms of the cancer. Those withoutpain denied that pain was a concern at thetime of diagnosis. They expressed a focus on‘‘fighting the disease and coping with

Table 3Pain Characteristics of the Two Groups in the Study Sample (n¼ 33)

Variable Advanced Cancer (n¼ 18) Postsurgical (n¼ 15) Total (n¼ 33)

Time in painNot at all 1 (5.6) 0 (0.0) 1 (3.0)Rarely 2 (11.1) 1 (6.7) 3 (9.1)Occasionally 3 (16.7) 1 (6.7) 4 (12.1)Intermittently 1 (5.6) 5 (33.3) 6 (18.2)Frequently 6 (33.3) 5 (33.3) 11 (33.3)Constantly 5 (27.8) 2 (13.3) 7 (21.2)Not reported 0 (0.0) 1 (6.7) 1 (3.0)

Time in severe painNot at all 4 (22.2) 2 (13.3) 6 (18.2)Rarely 4 (22.2) 4 (26.7) 8 (24.2)Occasionally 5 (27.8) 4 (26.7) 9 (27.3)Intermittently 1 (5.5) 3 (20.0) 4 (12.1)Frequently 3 (16.7) 0 (0.0) 3 (9.1)Constantly 1 (5.6) 1 (6.7) 2 (6.1)Not reported 0 (0.0) 1 (6.7) 1 (3.0)

How much pain troubled youNot at all 0 (0.0) 0 (0.0) 0 (0.0)Minimal amount 7 (38.9) 5 (33.3) 12 (36.4)Moderate amount 7 (38.9) 5 (33.3) 12 (36.4)Great amount 4 (22.2) 5 (33.3) 9 (27.3)

Worst pain intensity,a mean (SD) 6.00 (2.57) 8.00 (1.73) 6.91 (2.42)Percent pain relief, mean (SD) 68.06 (27.71) 75.27 (20.66) 71.33 (24.66)

Values are expressed as n (%) unless specified.aScale¼ 0 no pain to 10 worst pain imaginable; t¼�2.57 (P¼ 0.015).


treatment.’’ Those who experienced pain asa presenting symptom framed their story interms of how the pain was evaluated andwhether it led to a cancer diagnosis. The

Table 4Reports of Satisfaction with Pai

Variable

Advanced Cancer (n¼ 18)

n %

OverallVery dissatisfied 0 0.0Dissatisfied 1 5.5Slightly dissatisfied 2 11.1Slightly satisfied 0 0.0Satisfied 7 38.8Very satisfied 8 44.4Not reported 0 0.0

NursesVery dissatisfied 1 5.5Dissatisfied 0 0.0Slightly dissatisfied 0 0.0Slightly satisfied 0 0.0Satisfied 4 22.2Very satisfied 13 72.2Not reported 0 0.0

PhysiciansVery dissatisfied 0 0.0Dissatisfied 1 5.5Slightly dissatisfied 2 11.0Slightly satisfied 0 0.0Satisfied 4 22.2Very satisfied 10 55.6Not reported 1 5.5

meaning of the pain was intertwined with thediagnostic process and was often associatedwith anger or regret. One patient explaineda sequence of visits to the emergency room:

n Management (n¼ 33)

Postsurgical (n¼ 15) Total (n¼ 33)

n % n %

1 6.7 1 3.01 6.7 2 6.10 0.0 2 6.13 20.0 3 9.16 40.0 13 39.44 26.7 12 36.40 0.0 0 0.0

0 0.0 1 3.00 0.0 0 0.00 0.0 0 0.02 13.3 6 18.24 26.7 8 24.29 60.0 21 66.70 0.0 0 0.0

0 0.0 0 0.01 6.7 2 6.10 0.0 2 6.10 0.0 0 0.04 26.7 8 24.27 46.7 17 51.53 20.0 4 12.1


‘‘The doctor in charge told me not to evercome back because I was a pill junkie. Andhe didn’t realize that I had cancer. If theyhad just caught it then.’’ Another explained:‘‘At the time of my diagnosis I was in horriblepain. It was consuming. The pain wasconsuming.’’

In the postoperative group, expectationswere framed around the expected surgery. Sev-eral patients explained that the pain and itscauses were quite a bit worse than expected.One patient explained, ‘‘I didn’t realize allthe stuff that comes with it . the tube downmy throat. I didn’t realize I would havea hard time coughing. . where the surgerywas I thought I would be numb . but the an-esthetic only went up so far.’’ Others felt thatthe pain was minimal in terms of what theyexpected.

Patients had variable types and patterns ofpain, yet they overwhelmingly believed thattheir pain would be relieved. This was capturedby the following quote: ‘‘I had high expecta-tions. I was positive that it could be relieved.’’There was an understanding that the extent ofthe cancer or type of surgery might influencethe degree of pain. One woman said, ‘‘I do notexpect to have cancer in my liver without havingsome sort of pain.’’ Yet for many, the pain theywere experiencing was worse than they ex-pected. These experiences were based on boththe nature and temporality of the pain as exem-plified in the following: ‘‘The worst part about itis that it’s a constant pain,’’ ‘‘It’s so heavy’’ or‘‘It’s much deeper than I expected.’’ For some,pain that is ‘‘severe’’ is often for brief periods,for example, when medications wear off orwhen moving around or repositioning. Onewoman explained, ‘‘When I sit down it’s likea cup of tea. The pain seems to be gone and I re-lax. It’s telling me stay put.’’

For some, pain was well managed. One par-ticipant explained, ‘‘I just thought that I wouldbe in some type of pain all the time. It wouldalways be some discomfort, and the pain med-ications they have me on have taken the painaway completely. At times there is no pain.’’For others, pain was significant and unre-lieved, especially for those who were very dis-satisfied. One young man described hisexperience: ‘‘I can’t stand for more than5 minutes without pain. I can’t walk for morethan a quarter of a mile. High exertion

activities are out of the question. They can’tfind anything that works.’’

Sources of DissatisfactionFive participants (15.2%) were dissatisfied

with their pain management care. Those whoindicated that they were ‘‘slightly satisfied’’(n¼ 3; 9.1%) usually reported sources of dis-satisfaction as well. Table 5 provides exemplaryquotes for the sources of dissatisfaction, whichincluded poor communication, a lack of focuson the individual, amount of time spent withthe patient, pain was not believed, not beingtreated right, no treatment or ineffective treat-ment, delay in finding source of pain, and wait-ing time. Poor communication included a lackof information about diagnoses, questions notbeing fully answered, and limited explanationabout medications and health condition.One patient, who had to wait a long time formedication, acknowledged that she wouldhave been more satisfied if the nurse had ex-plained the reason for delay. No treatment orineffective treatment referred to the pain med-ication not working (i.e., the pain was not re-lieved). For several postoperative patients,the transition from intravenous or epiduralto oral medication was problematic, becauseof either poor communication or inadequaterelief during the transition.

Sources of Satisfaction: Being Treated RightSources of satisfaction are exemplified in

Table 6. The main theme from this analysiswas that patients felt that being treated rightwas essential to their satisfaction. Caring andconcern about pain were key factors in pa-tients reporting that they were being treatedright. Patients wanted to feel that their doctorsand nurses were genuinely listening to theirquestions and that they were conscientiouslytrying to help manage their pain. This wasbest explained as follows: ‘‘They consideredmy questions seriously and responded ina like manner. That’s always a very good feel-ing, they don’t brush the questions aside, butdid the opposite. I felt that they were actuallylistening to my questions. The good ones don’tmake you feel like you’re putting them out.They offer you all the things. That’s just thedifference.’’

The most significant traits that patients iden-tified as contributing to being treated right

Table 5Exemplars of Sources of Dissatisfaction

Source of Dissatisfaction Examples

Poor communication Well, I guess the inconsistency of the physician to say look (patient), in making mebelieve that hey, you can take these Lortabs three or four times per day. Don’tworry about it. Or you know, it was really never explained to me.

Not focused on me To me it seems like they’re too busy to be focused on just one person at a time. Thenurses have to come in first and take care of me and then the doctor is just anafterthought while she’s going to her next patient.

Amount of time spent with patient I feel like the doctors were not available to me.Pain not believed Sometimes my doctors don’t take me seriously so I’ve turned in the past to

medicating myself.Not treated right Don’t come in acting like they’re super Gods and you will do as you’re told. The

thing that really got me, she (my doctor) flipped. She . said ‘‘Well, you knowMargaret, you do have bone cancer,’’ and just turned around and walked awayand flipped her stethoscope at me and it was like . a glass of cold water justsplashing on me.

No treatment or ineffective treatment That would be the pain doctor. Just for the simple fact that they can’t find anythingthat works.

Delay in finding source of pain I need to find out for sure about my hip. What it is that’s making it hurt. I’m kindof wondering what are they going to do to me ..This sort of thing is what reallybothers me.

Waiting time I’ll go and get her and ask if she can get somebody else to give it (medication) tome and ‘‘Oh go to your room and I’ll get it for you’’ and then a half hour latershe makes it.


were caring, being looked after, trying to help,timely responses, individualized care, and be-ing knowledgeable. A sense that staff was car-ing was of major importance to manypatients in the study. Numerous people indi-cated that nursing staff who expressed a genu-ine interest in how the patient felt and wantedto do as much as possible for them were majorfactors in their being satisfied with their care.As one patient described the manner in whichher nurse took care of her, ‘‘It was like, I careand I’m sorry.’’ Another commented, ‘‘Somepeople are just genuinely more caring forother individuals and naturally those peoplegive you the greatest comfort.’’ Satisfied pa-tients felt that their health care professionalsboth responded with concern and demon-strated a personal interest in them. A caring at-titude was also conveyed when patients’questions were carefully attended to, whenneeds were quickly addressed, when care wascoordinated with other team members, andwhen attention was given to what the patientfelt was most helpful. One patient stressedthat she was satisfied because nursing staff con-veyed information about her pain to herdoctors.

The perceptions that an individual was beinglooked after and that health professionalswere trying to help were described as valuabletraits. It was important to patients that their

physician took a personal interest in their careand that they followed up on issues. They likedhaving nurses frequently come in to their roomto check on them. They took note when staffasked if they had pain and if they needed any-thing for it. One patient appreciated a painmanagement doctor’s advice about coordinat-ing use of pain medication with activity. Othersfelt that staff who were solicitous, who listenedto and believed their reports of pain, and whoresponded promptly were diligently trying tohelp. Another patient felt that she could restbecause she was confident that others weretaking good care of her. These behaviors andresponses contributed to the sense that theywere being treated right.

Timely responses were also very importantto patients. This included rapid responses toquestions, offers of treatment for pain, and re-turned phone calls if a patient was at home.Postoperative patients noted that becausenurses were frequently ‘‘in and out of theirrooms,’’ they could respond quickly to theirneeds. The nurses ‘‘get right on your problemimmediately.’’ Prompt efforts to help amelio-rate pain and the sense that staff took their re-ports of pain seriously contributed to patients’feeling that they were being treated right.

Individualized care was an important con-tributor to patients’ sense that they were beingtreated right. Individualization of care was

Table 6Exemplars of the Concept of Being Treated Right

Examples

Caring . it’s a caring look. It’s just a sweet look, a smile. If they can just be gentle and sweet and loving in anofficial way. I know they have to be official but just, just genuinely kind. They might give you a sweetlook like . not a pity look . it’s like a hug look. She seemed like she was sincerely concerned aboutmy pain. They are all caring people. You just feel like you are the only one.

Looking after me . They’ve got a lot of, a busy schedule, a lot of things going on, but I’ve always felt like he took a realpersonal interest in me as a patient. They would follow up. The nurses were always in and out. I couldhave just said ‘‘I need something’’ and it was here. ‘‘I can rest because I know that somebody’s lookingafter my interests.’’

Trying to help Just the valued information that he gave me and the way he talked to me. And yes the different drugs.They considered my questions seriously and responded in like manner. I felt like they got back to mewhenever I had a concern.

Solicitous They were always asking me how my pain was . and if I needed anything.Timely response She responds quickly to my questions. Or if I have any pain she immediately says, ‘‘You know, what can I

get for you? What would help to make it better?’’ Gives me several options. They responded veryrapidly, very concernedly; that’s very good. I could have just said ‘‘I need something’’ and it was here.Rapid relief is important.

Individualized . it wasn’t like you have to take this certain pill. It was, ‘‘Well, let’s do what’s best for you and what youfeel is best.’’ So it really was pain management not just ‘‘Here’s your regular dose, you take this everyfour hours and you will be fine.’’ It wasn’t like that. She comes and talks to me in my language.

Stay with it They’ve tried real hard to give the right combinationdyou know, a little more of this, a little less of thator whatever.

Knowledgeable She answered questions I never even knew could be answered. Appreciated explanations of whysomething didn’t work or what could be done to make it work.

Coordination Were they aware of the pain, were the nurses relaying the information that I gave to them? And theywere.


observed in the practices of both physiciansand nurses. It was reflected when health careprofessionals talked to patients in languagethat they could understand, when they gavechoices about medication use, and when theyrespected patients’ preferences about theircare. Patients appreciated that professionalsrecognized the range of people’s preferenceswith regard to use of pain medication; somepatients only wanted to take medication ifthey were experiencing severe pain, whereasothers wanted to avoid all pain. Consistencyof staff was noted to be an important factorin allowing nurses to know their patients welland thereby treat them as individuals. ‘‘Shejust knew how I worked.’’ Efforts to ‘‘finetune’’ use of pain medication were greatly ap-preciated and demonstrated that the doctorwas listening to the patient’s concerns, perse-vering in attempts to treat their pain, individu-alizing care, and that the patient was being welltaken care of. For example, ‘‘They’ve tried realhard to give the right combinationdyou know,a little more of this, a little less of that or what-ever .. They wanted to get it just right.’’ Thesefactors represented a sense of staying with it,not giving up on achieving pain relief.

Confidence that health care professionalswere knowledgeable was an additional

contributor to patients’ feeling that they werebeing treated right. One patient was happywhen her doctor ‘‘answered questions I nevereven knew could be answered.’’ She appreci-ated explanations of why an approach to con-trol her pain did not work and what changesmight help. This sort of discussion helpedher understand that there were a variety ofmethods that could be used to manage herpain and to help her feel more comfortable.

Sources of Satisfaction: Safety NetThe second major theme was the existence

of a safety net for pain management. Thistheme refers to patients’ perception of safetybecause a plan for pain control existed, whichwas under their control, readily available, andeffective. One patient illustrated this conceptwhen she noted that despite increased pain,she felt satisfied with her care because sheknew that pain medication was available toher and that it was her choice whether or notto use it, by stating ‘‘It was under my control.’’Patients felt reassured if they knew that effec-tive pain medication was readily available tothem and that there were multiple options ifmedications used initially were not adequate.The reassurance that such a backup plan pro-vided was demonstrated by a patient who


said, ‘‘They could always try something else.’’Other people said, ‘‘I always used a little bitless . because any time I asked for it I wasable to get it’’ and ‘‘They were always askingme how my pain was, and . if I needed any-thing.’’ Confidence that pain medication waseffective was demonstrated by an individualwho stated, ‘‘I’m just thankful to have goodmedicine ..’’ It was also important to patientsthat they felt supported in their desire to usepain medication. ‘‘Both the medication wasthere, and the support was there to use it.’’Prompt response by health care staff was an-other important contributor to this sense ofsafety net. ‘‘Whenever I called them and toldthem how I felt, they (always) seemed to takecare of the situation’’ and ‘‘I got it when Ineeded it’’ illustrate how important prompt re-sponses were to patient satisfaction with theirpain management. One outpatient describedher feeling of the existence of a safety net bystaff response to her request for additionalpain medication. ‘‘We just call down there, Imean boom, there is a prescription there.’’Health care team members who acted proac-tively to anticipate and respond to their pa-tients’ pain both while in the hospital and athome created satisfaction and a feeling ofsafety for patients in this sample.

A critical aspect of having a safety net wasthat participants wanted to be in control oftheir pain management whenever possible. Avariety of reasons were given for their desireto have some autonomy in this aspect of theircare. The mere fact that they were in controlwas important to some people. As one patientstated, ‘‘Being able to control it was great. Ihave to commend the staff at the hospitalbecause it puts the patient more in controland the patient has more free choices anddetermination of the amount of medication.I just think it’s a good thing when medical per-sonnel do put the patient more in charge.’’

Others wanted to be able to exercise choicein how much pain medication they took at anygiven time. ‘‘One thing, I’m in control of it.And I like that. You know. If I want to go aheadand have the pain, I can if I want. Or if I wantto get rid of it, then I can take the pills. So it’sup to me to manage it. I just had to ask them,but they’d say, ‘‘One tablet or two?’’ So I wasstill the one making the final decision onhow much I was taking.’’

It was important to others to have periods oftime in which they were not using any painmedication: ‘‘I wanted to have some periodswhere I didn’t have any in my system.’’ One pa-tient felt that it is beneficial to feel pain. Thisindividual said, ‘‘I mean when you quit feelingthat pain, you’re well.’’ They felt that periodswithout pain control allowed them to monitortheir progress most effectively.

Some people were concerned about ‘‘get-ting hooked’’ or about unpleasant side effects:‘‘I don’t want to become dependent, or I don’twant to be mentally slow. That’s why I’d ratherhave a little pain.’’ ‘‘I could . take more, but. I don’t want to get hooked on anything.’’Occasional total relief was a consideration foranother participant. This individual did notobject to experiencing pain at times, but itwas important to her that when she desiredit, she had sudden pain relief. ‘‘I really likefeeling that sudden relief, because then I canfeel the pain go away.’’

Prompt responses by staff to patients’ re-quests for pain medication made it easier forindividuals to exert personal choice and con-trol; because patients were confident thatthey would have ready access to pain medica-tions when they were ready to take them,they did not worry about availability. One pa-tient felt that she used less medication becauseshe did not have to worry about lengthy waitsfor medication.

Another patient felt that self-administrationof pain medications while in the hospital(through use of a patient-controlled analgesiapump) facilitated decreased use of pain medica-tion. She said if she had had to ask for medica-tion to relieve pain, ‘‘I probably would’veasked for more relief than was necessary justfrom fear of the pain.’’ Another person stated,‘‘I don’t think I used as much as I would haveif I had . not been in control . if I would’vehad to ask for relief.’’ Another explained,‘‘One thing I really thought was excellent aboutit was giving the patient control of the situationbecause, in my case, I felt having that controlallowed me to make choices. I’m still doing itmy way.’’

Sources of Satisfaction: PartnershipPartnership was the third main theme and

refers to collaboration between the patientand their health care team or among health


care team members to develop an effectivepain management plan for individual patients.One patient characterized the importance ofthis partnership by saying that ‘‘the communi-cation, working together’’ with her doctorswas an important part of achieving the goalof managing pain. Another person describedthe importance of communication in the part-nership by saying, ‘‘Were they aware of thepain, were the nurses relaying the information[to the doctors] that I gave to them . whenthey came in and checked on me, were theyasking if I was comfortable or not, and theywere.’’

Trust between patient and staff was an inte-gral part of the partnership, which satisfiedpatients described. They felt that trust wasreflected in having their questions answered,responsiveness to their preferences, and respectfor their desire to be in control. One patientconveyed, ‘‘I felt that they were actually listeningto my questions. They considered my questionsseriously and responded in like manner. That’salways a very good feeling; they don’t brush thequestions aside, but did the opposite.’’ Anotherpatient characterized the attitude of her healthcare providers as ‘‘Let’s do what’s best for youand what you feel is best.’’ Satisfied patientsdescribed their partnership as one that empha-sized communication, which made them feelthat they worked together with staff and inwhich staff responded quickly to their needs.Two satisfied patients commented, ‘‘She justknew how I worked; she’d been on my shift quitea few times; they are there for you,’’ and ‘‘I feltlike everybody was willing to find any means tohelp me.’’

Knowing their patients well also enabledhealth care professionals to develop a partner-ship in which ‘‘They do the best for my person-ality, for what I want.’’ The partnershipapproach reflects a belief in the patient, a com-mitment to involve the patient in their ownpain management, and coordination amongteam members. As one patient described theapproach to her care, ‘‘we worked together.’’Communication with the health care teamabout their pain control and preferences re-garding use of medication facilitated participa-tion in decision making. Greater knowledgeabout what a patient was experiencing alloweddoctors and nurses to offer more options fromwhich a patient could choose.

Sources of Satisfaction: Efficacy of PainManagement

The final theme identified was the efficacy ofthe pain management. The efficacy of the drugsprescribed and how quickly they provided reliefwere both important. One participant ex-plained: ‘‘. letting me have the morphine .as opposed to other doctors in the past whojust gave me pills which were less effective andthey didn’t give you . sudden relief.’’ Anotherexplained the source of her satisfaction as fol-lows: ‘‘Well, because they controlled my pain. Iwas not uncomfortable pain-wise. I mean thatwas managed.’’ Another patient with advancedcancer explained, ‘‘When I’ve got the patchon, I’m free from it night and day.’’

Satisfaction: Exploring the HighPain-High Satisfaction Paradox

One component to this study was to examinethe paradox of patient satisfaction despite pa-tients reporting moderate to high levels ofpain. Thus, in the qualitative interviews, weprobed this matter to explore this discrepancybetween health care satisfaction and unrelievedpain. Respondents did not give one consistentreason as to why they were satisfied with theircare despite having unrelieved pain, but, infact, respondents often provided several explana-tions. One reason for the discrepancy was that pa-tients expected some pain or they believed thattheir pain could not be completely relieved.One patient conveyed, ‘‘I’ve basically come toaccept that until the cancer is gone, there’s noth-ing out there that’s going to ease my pain in myspecific situation.’’ Another explanation for thisdiscrepancy was patients had some pain reliefin different forms. For example, some patientshad pain medications available that provided re-lief, or their pain was relieved most of the time orrelieved promptly. One patient said, ‘‘Well, I hadsome breakthrough medicines . so I would givethem credit for planning ahead.’’ Another pa-tient explained that he/she was primarily inpain when the medication wore off, ‘‘It’s notlike I was in that pain all the time.’’ Another pa-tient conveyed, ‘‘. looking back and . thinkingthat I haven’t had times when I was in a lot ofpain. That makes me satisfied.’’

In addition, as previously described, patientsfelt that they controlled the amount of painand it was their choice to have some pain. In


these cases, experiencing unrelieved pain was at-tributed to the patient choosing to have somepain or not take the pain medication morefrequently.

Finally, an unwillingness to blame was an-other reason identified to explain the discrep-ancy between satisfaction and unrelieved pain.One patient expressed, ‘‘I realize that you arehuman too, and that if I still have pain, itmay be that there’s a point that we cannotget rid of all the pain. So I don’t want to blame. for the pain that I have.’’

DiscussionThis qualitative study explored the patient

experience and identified core aspects of satis-faction with pain management from the per-spectives of two groups of patients with pain:patients with advanced cancer and patients ex-periencing postoperative pain. The sample rep-resented the diversity in pain experience foundboth within and between these two populations.The sample included the types of cancers thatare likely to be associated with either advancingcancer or a surgical treatment option. The sam-ple was diverse in age, yet homogeneous inrace/ethnicity, thus limiting the generalizabilityof the findings. The sample was similar to manyothers reported in the literature in that partici-pants were predominantly (75%) satisfied orvery satisfied and yet experienced unrelievedpain (mean¼ 6.91).4e21 The significantly high-er worse pain intensity in the postoperativegroup may have been because of peaks in acutepain typical in the postoperative period as theamount of time in severe pain was not differentbetween the groups. In previous research,

Table 7Definitions of Four Core Aspects Influencing Satisfa

Concept

Being treated right The caring and concern of knpromptly, try to help, and b

Safety net Sense of safety knowing that tmembers act proactively to awhen needed.

Efficacy of pain management The pain management plan isquickly and side effects aredesigning and implementin

Partnership Collaboration that occurs betwcare team members to discumanagement plan.

others have suggested that the peaks andtroughs associated with a period of pain experi-ence may partially explain the paradox of pa-tient satisfaction, although the pain appears tobe unrelieved.10,21 This notion was supportedby the experience of some patients in this studywho indicated that their worst pain score was forbrief periods, was often associated with activityor movement, and was relieved by taking pre-scribed medication.

The use of qualitative methods provided anexcellent approach to systematically examinekey aspects of dissatisfaction and satisfaction.Four key themes emerged and are summarizedwith definitions in Table 7. The differences be-tween the advanced cancer and postoperativegroups were mostly reflected in their expecta-tions about pain; the aspects of satisfactionand dissatisfaction were consistent across par-ticipants from each group.

Many of the factors influencing satisfactionin this sample are consistent with hypothesesor findings by other investigators in multiplepopulations: caring behaviors, expectationsthat pain cannot be relieved or that it willhave peaks and troughs, responsiveness to re-quests for pain medication, and not wantingto get anyone in trouble.9,10,14,16,21,27,30,32e38,46

We did not find agreement with the suggestionby Bostrom et al. that patients did not knowwhat type of relief was available, although ourfindings support their suggestion that kind-ness is an important factor in patient judg-ments of satisfaction.8

The findings from this U.S. sample of cancerpatients parallel many of the results reportedby Simonsen-Rehn et al. in a similar qualitativestudy of 19 cancer inpatients in Finland.40

Their findings indicated that it was the

ction with the Quality of Pain Management

Definition

owledgeable health professionals who listen, respondelieve the individual’s reports of pain.here is a plan and medications in place. Health care teamnticipate problems. Patient has control to take medication

efficacious and not too complicated. Medications workmanaged. Health care professionals have expertise wheng the plan.een the patient and the health care team or between healthss, strategize, and plan for the patient’s individual pain


combination of kindness and communicationalong with receiving pain-relieving medicationwhen needed that constituted what theytermed the ‘‘caring pole’’ of the continuumof pain management. Their informants alsobelieved that staff tried to do a good job andshould not be blamed if pain was unrelieved.40

The importance of the patient-provider rela-tionship has been identified as essential to satis-faction in other research with cancer patients.10

This concept was supported in our findings, par-ticularly by the themes of being treated rightand of a partnership between patients and pro-viders in developing and implementing a painmanagement plan. This concept as well asmany aspects of being treated right, includingcaring, respect, and individualized and coordi-nated care, are consistent with concepts ofpatient-centered care, as operationalized in thepast 20 years and prioritized as essential to qual-ity care by the U.S. Institute of Medicine.23,47

One theme identified in this study providesa new insight to the knowledge related to satis-faction with the quality of pain manage-mentdthe concept of a safety net. Importantto this concept was a perceived sense thata plan for pain control was readily availableand effective. The safety net was associatedwith a sense of security that there is help avail-able and that the team will mobilize quickly ifpain is out of control. Key to the concept ofa safety net was that many patients believedthat the implementation of the plan was undertheir control, that is, they could regulate theamount of pain and or side effects of medica-tions that they were willing to tolerate. Thiscontrol was important to their sense of satisfac-tion. This perception may be similar or relatedto the concept of self-efficacy for pain manage-ment and further concept clarification is war-ranted. This qualitative finding supports theresults of a quantitative study of postoperativeorthopedic patients in which perceived controlpartially mediated the relationship betweenpain severity and satisfaction.46,48

Finally, it is notable that there was little evi-dence in the patient interviews of the use ofnonpharmacologic therapies. Only positionand activity were mentioned as alleviating orexacerbating factors to pain. Patients may notexpect that nurses and doctors would use com-plementary and alternative therapies as part oftheir pain management plan.

LimitationsIn addition to the lack of racial/ethnic diver-

sity, this study was limited in that the samplewas small and specific to the oncology setting;these issues are important in multiple settingsand patient populations. We also did not knowmuch about patients’ previous experienceswith other pains and pain-related encountersin their lifetime, nor did we explore their previ-ous experiences with hospitalization and painmanagement. We also had multiple interviewers,which may have influenced patient responses.

ImplicationsThe findings from this study are being used to

develop a tool to measure the quality of carerelated to pain management from the patientperspective. The findings provide both a con-ceptual model of important latent variables(Table 7) and specific factors that are importantto include in such a tool such as timeliness ofresponse or that providers believe reports ofpain. Important lessons from this study includethe notion that patients often cannot separatethe pain management experience from theirentire patient care experience. Designing atool that includes more global aspects ofpatient-centered care such as being treatedright in consort with specific pain managementbehaviors is needed. It also is clear that variabil-ity among professionals in the quality of careprovided exists. Measuring perceptions proxi-mal to the delivery of care, for example, at theend of a shift or clinic visit, is recommendedto allow evaluation of specific episodes of care.

The findings also suggest implications forpractice. Assessment of pain may be more pre-cise by using a series of measures indicating‘‘pain now’’ or an indicator of amount oftime that pain was severe or intolerable vs.worst pain intensity over the past 24 hours. Pa-tients expect that their reports of pain will bebelieved. They expect care that is caring, indi-vidualized, and responsive to their needs. Theyexpect that health professionals will partnerwith them to develop a plan for pain manage-ment that is effective, works promptly, and al-lows them to balance pain relief with sideeffects of medications. And finally, they expectto have a safety net that will allow for a changein plans if the treatment does not work. Theseexpectations can inform education of healthprofessionals and quality improvement efforts


of organizations that care for cancer patients.Such efforts are gaining importance as nation-ally mandated indicators of quality, such as theHealth Consumer Assessment of PerformanceSurvey,49 provide benchmarking data on pa-tient reports of pain relief and responsivenessto reports of pain. Poor performance on thesescreening indicators will drive more detailedperformance measures of the quality of carerelated to pain management.

AcknowledgmentsThe authors gratefully acknowledge the

patients in pain who agreed to share their ex-periences and expectations with them.

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