Patricia Rushton, RN,

PhD, CS, ANP, AOCN

Sherry Brown, RN, MN

Patient andCaregiverPerceptions ofCancer Pain Control

OBJECTIVES: This study measured the perceptions of cancer patients

and caregivers in Utah concerning knowledge about and adequacy

of pharmacologic cancer pain control.

MATERIALS AND METHODS: A descriptive survey was sent to a strati-

fied random sample of adult cancer patients obtained from the

Utah Tumor Registry. Questionnaires asked cancer patients and

caregivers about their knowledge of pain control and about

perceptions of the adequacy of pharmacologic cancer pain

management.

RESULTS: The study had a 52% response rate (259 of 500) after

two mailings. Eighty-five percent (219 of 259) of the respondents

stated that they had no cancer pain. With the first mailing, a “no

pain” response was not offered as an option. When the research-

ers realized that this might be a possible response, a second mail-

ing was sent, which may be the reason for the high response rate.

CONCLUSIONS: Cancer literature indicates that much cancer pain is

not effectively controlled. The majority of the respondents of this

study reported no pain. Because this result is different than that

reported in the literature, it may indicate that education of health-

care providers, patients, and families can improve cancer pain

management and control. It may also indicate an inability of the

study to obtain data from those patients having cancer pain. This

study should be repeated with a focused population of advanced

stage cancer patients with types of cancer typically producing high

levels of cancer pain.

KEY TERMS: Caregiver; Cancer, pain; Pain control; Patient

perception

In 1994, the Commission on Cancer Pain for the Agencyfor Healthcare Policy and Research (AHCPR) under the

US Department of Health and Human Services, provided anupdate on the problem of cancer pain.1 The panel notedthe following: 1) 8 million people in the United States re-ceive a diagnosis of cancer; 2) 1 million people receive anew diagnosis annually; 3) the degree of cancer pain varieswith the type and stage of disease, but 75% of patients havepain in the final stages; 4) therapies are available to providerelief to more than 90% of patients suffering from cancer,using relatively simple pain management techniques; and 5)however, cancer pain control continues to be a major prob-lem in caring for cancer patients.

Because it is patients and families who suffer, it seemedappropriate to use their perceptions about the patients’pain control as the basis for measuring the success of cur-rent cancer pain control in Utah.

This study investigated the perceptions of cancer pa-tients and their families in Utah concerning knowledgeabout and effectiveness of pharmacologic cancer pain con-trol. No such study has been performed with Utah cancerpatients, though similar research projects have been pur-sued nationwide.

Literature Review

The report from AHCPR noted that unrelieved paincauses unnecessary suffering and destroys quality of life.

Patricia Rushton, RN, PhD, CS, ANP, AOCN, Assistant Profes-sor, Brigham Young University College of Nursing, Provo, Utah.

Sherry Brown, RN, MN, Clinical Specialist, Veterans Adminis-tration Medical Center, Salt Lake City, Utah.

This research was supported by the Utah Cancer Registry,which is funded by contract #NO1-CN-6700 from the NationalCancer Institute with additional support from the Utah State De-partment of Health and the University of Utah. The project wasalso supported with personnel assistance from the Utah Division ofthe American Cancer Society.

Address correspondence to: Patricia Rushton, RN, PhD, CS,ANP, AOCN, 4015 South 5200 West, Salt Lake City, UT 84120.

CANCER PRACTICE September/October 1999, Vol. 7, No. 5 257© American Cancer Society 1065-4704/99/$14.00/257 257–261

Patients with pain often decrease activity, lose appetite, andsleep less, all of which cause weakness. Patients in pain maylose hope and reject active therapy because pain is severeand depression is present. Uncontrolled pain may preventpatients from working, enjoying recreation, or taking plea-sure in their usual role in the family and society. Accordingto the AHCPR guidelines, pain control merits a high prioritybecause it allows cancer patients to lead a more productivelife, regardless of the stage of their disease.

If the cancer pain control is so important and morethan 90% of patients experiencing pain can achieve controlusing relatively simple pharmacologic means, why is it thatcancer pain is continually undertreated? There are manybarriers to effective pain management. The AHCPR guide-lines describes these barriers in three major problem cat-egories related to healthcare professionals, patients, andhealthcare management (Table 1).

In a two-part study, Ferrell et al2 described the impactof cancer pain on family caregivers and on their manage-ment of the patient’s cancer pain at home. Though no dis-ease stage was given for the patients enrolled in Ferrell’sstudy, the average time since receiving the diagnosis ofcancer among the study participants was 35 months, andthe average time since the onset of pain was 14 months.The study concluded that cancer pain had an impact oncaregivers and the family because it was perceived as asymptom of progressive disease and death. In another trial,Ferrell et al3 studied the impact of cancer pain managementon the family of the pediatric cancer patient. Again, in thisstudy, no disease stage was given for study participants, butthe average time since diagnosis was 26 months, and theaverage time since the onset of pain was 16 months. The

study concluded that family caregivers made enormous sac-rifices to care for their children, yet the caregivers had afeeling of great helplessness in this care. It also determinedthat family caregivers would benefit by more educationabout the correct principles of cancer pain management.Ferrell et al4 studied the impact of cancer pain education inthe elderly patient. This study also showed a need for in-formation about how correct principles of cancer pain con-trol improved pain control in the elderly patient.

Dar et al,5 in a quantitative study done with a combi-nation of questionnaires and interviews, noted that patientsconsistently underestimated the amount of distress theirpain produced in their family members. Family membersalso underestimated how much pain the patient wasexperiencing.

McMillan6 studied the effect on the caregiver of pro-viding home care to the terminal cancer patient. She notedthat serving as the primary caregiver in the terminal phasesof a person’s illness with cancer can have a negative impacton all aspects of the caregiver’s quality of life.

Yeager et al,7 in a descriptive correlation study, foundtwo differences in perceptions about pain control betweencancer patients and their family members. The first wasdisagreement about using low doses of pain medicationearly in the course of the disease to have access to higherdoses as the disease progressed. The second was disagree-ment about the benefits of using pain medication aroundthe clock as opposed to prn. These disagreements demon-strated the lack of education and understanding of patientsand families concerning the most effective means of admin-istering pain medication.

Higginson and Hearn,8 in a multicenter evaluation ofcancer pain control by palliative care teams, noted thatpatients with advanced cancer in the community experi-enced a 70% rate of cancer pain and that similar patients inthe hospital experienced a 60% to 79% rate of cancer pain.The study found the factors that influence cancer pain in-clude site of the tumor, the type of pathophysiology of thepain (nociceptive versus neuropathic), and pain etiology(tumor versus nonmalignant). Higgins and Hearns8 notedthat the degree of pain and its effect on the ability to func-tion needed to be taken into effect when assessing cancerpain.

Trowbridge et al9 documented a cancer pain rate of62% among patients seeing an oncologist. In this study, thestages of the cancer for each participant were not given.However, participants had to have recurrent or metastaticdisease with metastases involving more than regional lymphnodes. The purpose of the study was to document the ef-fect of cancer pain assessment on the prescriptive practiceof the oncologists involved.

In Utah in particular, an additional factor that may playa part in the control of cancer pain is the use of alternativeor nontraditional methods of pain control. In an unpub-lished study performed by Mooney,10 it was demonstratedthat Utah had the highest rate of the use of alternativemethods of treating cancer ever measured, 18.3%. This wascorroborated by Lerner and Kennedy11 in a national tele-phone survey that showed that 14.7% of cancer patients inthe western, mountain state region of the United Statesused alternative methods in treating cancer. It is possible

Table 1. AHCPR List of Barriers to the Managementof Cancer Pain*

Problems related to healthcare professionalsLittle training in pain managementInadequate ability to assess painConcerns about regulations around controlled substancesFears of patient addictionConcern about side effects of potent analgesics

Problems related to patientsReluctance to report pain because of fear about distracting physicians

from treating their underlying diseaseFear that increased pain means the disease is progressingBelief that “good” patients do not complain about painReluctance to take pain medicationsFears of addiction or being thought of as an addictConcern about unmanaged side effects, such as being too sleepy to be

functionalFear about becoming tolerant to pain medicationsFear that drugs will lose their potency over time

Problems related to healthcare managementLow priority given to cancer pain treatmentInadequate reimbursement and restrictive regulation of controlled

substancesNo access to treatment

*From Agency for Health Care Policy and Research (AHCPR).1

258 CANCER PRACTICE September/October 1999, Vol. 7, No. 5

that this trend in Utah of using more complementary andalternative therapies continues, and further study is neededto determine the prevalence of the use of these methods inmanaging pain.

Research Question

This study focused on measuring the perceptions ofUtah cancer patients and caregivers in Utah concerningknowledge about and perceptions of cancer pain control.Though national studies dealing with cancer pain controlare cited in the literature review, no studies had been car-ried out in the Utah population. Therefore, it was unknownwhether or not perceptions among patients in Utah wereconsistent with populations studied in other areas of thenation.

Specific aims were as follows: 1) Measure perceptionsof Utah cancer patients and their caregivers concerningknowledge of appropriate cancer pain control, as assessedby the Patient Pain Questionnaire (PPQ) and the Family PainQuestionnaire (FPQ), validated research tools developed atCity of Hope National Cancer Center (Duarte, CA). 2) mea-sure perceptions of cancer patients and their caregivers inUtah concerning the adequacy of current cancer pain treat-ment, as assessed by the aforementioned tools.

Methods

Design

This descriptive survey was designed to measure theperceptions of cancer patients and caregivers in Utah con-cerning knowledge about and adequacy of pharmacologiccancer pain control. Questionnaires were sent to cancerpatients and their caregivers throughout the state of Utah.

Sample

A stratified random sample of adult patients withbreast, colon, lung, and prostate cancer was acquired fromthe Utah Tumor Registry. Patients with those cancers wererecruited because those cancers are known to frequentlyinvolve pain as a symptom during the course of the disease.A random sample of other cancers was chosen to bring thetotal number of potential participants to 500. All counties inthe state were sampled. However, Utah is largely a ruralstate with a long band of metropolitan population runningfrom the northern border to the middle of the state andanother center in the southwest corner of the state. Fifteenpercent of the participants lived in rural areas of the state,and 85% in the metropolitan areas. Table 2 summarizes thetypes of cancer that were included in the study.

Criteria for inclusion of a patient in the study were asfollows: any cancer patient/caregiver who was older than18 years of age; English speaking; presently receiving activetreatment for their disease or had discontinued activetherapy and was receiving palliative “comfort care”; receiv-

ing active treatment or comfort care as an inpatient or out-patient; and received a diagnosis of cancer in the last 5years. On the advice of the Utah Tumor Registry, 5 yearswas chosen because it provided both patients who hadrecently received diagnoses of cancer as well as patientswho had dealt with their disease, its treatment, and effectsfor a period of time. Caregivers were designated by thepatients.

Procedures

A letter explaining the project and the research toolswas sent to study patients. A stamped, return-addressedenvelope was included. A reminder postcard was mailed tothose who had not returned their information in 2 weeks.Responses were returned to the Utah Tumor Registry. Con-sent to participate in the study by the patient and the care-giver was indicated by the return of a response.

The PPQ was to be answered by the patient. The FPQwas to be answered by a caregiver. Demographic data werealso obtained. After questionnaires were returned, all iden-tifying information was deleted. Patient and caregiver ques-tionnaires were given matching anonymous numbers bywhich they were identified during data analysis.

Instruments

Two 16-item Likert Scale questionnaires developed byCity of Hope Cancer Center, were used to collect data fromthe patients and their families. These were the PPQ and theFPQ. These tools were chosen because of their previouswide applicability and their ease of understanding and sim-plicity in administration. Validity and reliability had beenestablished by Ferrell and colleagues in previous studies.2–4

Ferrell reported the tools “had been tested with establishedreliability (test, retest, internal consistency) and validity(content, construct, concurrent). A series of psychometricanalysis were performed on the instrument including con-tent validity (CVI = .90), construct validity (ANOVA, P lessthan .05), concurrent validity (r = 60, P less than .05), factoranalysis, and test-retest reliability (r = .80) established witha retest of caregivers (N = 67).

Data Analysis

Frequencies were to be calculated on responses to painquestionnaires and demographic characteristics. However,

Table 2. Types of Cancer (N = 495)

Type n

Gastrointestinal 102Breast 100Prostate 100Lung 96Uterine 25Skin 15Other 57

Patient and Caregiver Perceptions of Cancer Pain Control / Rushton and Brown 259

secondary to the low number of usable responses, no dataanalysis was performed.

Results

Packets consisting of demographic questionnaires andaccompanying pain questionnaires were mailed to 500 can-cer patients and their caregivers. The questionnaires thatwere returned came as complete packets from both thepatient and the caregiver. The “no pain” responses weresingle statements assumed to be an agreement betweenpatient and caregiver. “Usable” questionnaires were thosereturned with a “yes pain” response and with completedquestionnaire forms. The “unusable” questionnaires werethose returned with “yes pain” response but with incom-plete questionnaire forms. The results of returns are sum-marized in Table 3.

Stages of cancer were obtained by the Utah CancerRegistry and reflected the stage of the cancer at diagnosis.The stage of the disease at the time of the survey was un-known by the Utah Cancer Registry or the researchers.Table 4 summarizes the stages of disease for patients notresponding. The 219 responses returned with a “no pain”statement were evaluated according to stage of disease atdiagnosis. These results are summarized in Table 5. Re-sponses were not received from caregivers in either thegroup of patients who did not respond or who responded“no pain.”

Because of the small number of usable returns (15), nostatistical test could be effectively applied to the data. Amanual tabulation of the demographic and pain question-naire data showed no pattern in responses. Table 6 summa-rizes the stages of disease for these patients.

Discussion

The results of the study are counter to most reports inthe literature in that the majority of patients (85%) werefree of pain. There may be several reasons for this result. Inthe past 10 or 15 years in Utah, there has been an effort toimprove knowledge and attitudes about cancer pain controlby educating both healthcare providers and those theyserve. Interested groups such as the Intermountain Chapterof the Oncology Nursing Society, the Intermountain WestChapter of the American Society of Pain ManagementNurses, the Utah cancer pain initiative, Cancer Pain Free–Utah, the Utah Division of the American Cancer Society,and the University of Utah Department of Continuing Edu-cation and College of Nursing have sponsored frequent con-ferences on cancer pain management. The University ofUtah College of Nursing and School of Medicine and theBrigham Young University College of Nursing have inte-grated principles of pain management into their programs.The American Cancer Society and various state hospiceagencies have attempted to increase the awareness of thepublic about the potential for better cancer pain manage-ment. There may be other programs of which this author isnot aware. These educational efforts may have had an im-pact on the results of this study. It is wonderful to think thateducation actually produces the desired effects of reducedsuffering for Utah cancer patients.

Another reason for these findings may be that the ma-jority of patients who responded “no pain” had local disease(Table 5). This sample may not have captured patients withdisease sufficiently advanced to produce pain.

The majority of patients who did not respond (Table 4)and who did not return usable data (Table 7) also had localdisease. This sample, also, may not have addressed patients

Table 3. Results of Questionnaire Returns

Status n %

Questionnaires returned 259Questionnaires returned with “no pain” response 219 85Unusable returns 18 7Patients stating they did not want to participate 3 1Deceased patients 4 2Usable returns 15 5

Table 4. Stages of Cancer in Patients NotReturning Survey (N = 241)

Stage n %

Unknown 13 8In situ 19 12Local 69 42Regional 50 31Distant 12 7

Table 5. Stages of Cancer in Patients with“No Pain” (N = 219)

Stage n %

Unknown 16 7In situ 18 8Local 108 49Regional 66 30Distant 11 5

Table 6. Stages of Cancer in Patients ReturningUsable Returns (N = 15)

Stage n %

Unknown 0 0In situ 0 0Local 6 40Regional 6 40Distant 3 20

260 CANCER PRACTICE September/October 1999, Vol. 7, No. 5

who had pain from advanced disease, even if the responseshad provided usable data.

The patients who did not respond may have had dis-ease that advanced since the time of receiving their diag-nosis to metastatic disease. These patients may have beenunable to respond because of illness or death. If this was thesituation, these patients may have experienced pain, butwere unable to report their perceptions.

Though a questionnaire/interview format has beenused in some of the studies cited in the literature review,the “questionnaire only” format was used because of thelogistical difficulty of attempting to interview 500 subjectsand their caregivers. It is possible that the study participantsdid not understand the questionnaire, so that the “question-naire only” format, as opposed to questionnaire/interviewformat, may have contributed to the small amount of evalu-able data. The questions that must be asked in light of theuse of this format and the small amount of evaluable dataare: 1) Did the patient understand the introduction letterand questionnaire?; and 2) would results have been differ-ent if an interview format had been added to be more cer-tain that the participants understood what was being askedin the questions?

Clinical Implications

This study describes an unexpected patient outcome: Agroup of cancer survivors indicating that they are pain free.The study should be repeated with the following modifica-tions to clarify whether these reports reflect actual patientsituations or are the product of unintended selection biasnot mitigated by randomization.

The study should be carried out with a more focusedcancer population consisting of cancer patients with re-gional and distant metastases. Patients with in situ or local-ized disease might not have pain. Therefore, a better mea-sure of perceptions concerning knowledge about andadequacy of pharmacologic cancer pain relief might be ob-tained by studying patients who have advanced disease.

Consideration should be given to recruiting partici-pants who have received a diagnosis in the last 6 months to1 year to ensure that patients will be living and have ad-vanced disease.

An interview format should be used for future study.Skilled interviewers could assist patients and their caregiv-ers in understanding the questions, without leading sub-jects to specific answers.

The sample size should be small enough to allow rea-sonable use of the interview method, but large enough tocollect statistically evaluable information. A sample of about100 patients with stage III and stage IV cancer wouldachieve these goals.

If future research demonstrates results that are similarto those of this study—a large percentage of cancer survi-vors who are pain free—these findings may indicate thatpatient education and other programs implemented in Utahto anticipate and manage cancer pain are effective and maybe valuable for use in institutions in other states.

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Clinical Practice Guideline No. 9. Rockville, Md: Agency forHealth Care Policy and Research, U.S. Department of Healthand Human Services, Public Health Service (AHCPR Publica-tion No. 94-0592); 1994.

2. Ferrell BR, Rhiner M, Cohen MZ, Grant M. Pain as a metaphorfor illness. Part I: impact of cancer pain on family caregivers.Oncol Nurs Forum. 1991;18:1303–1309.

3. Ferrell B, Rhiner M, Shapiro B, Strause L. The family experi-ence of cancer pain management in children. Cancer Pract.1994;2:441–446.

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Table 7. Stages of Cancer in Patients ReturningUnusable Data (N = 18)

Stage n %

Unknown 2 11In situ 0 0Local 11 61Regional 3 17Distant 2 11

Patient and Caregiver Perceptions of Cancer Pain Control / Rushton and Brown 261