Putting Cancer Pain Management Regimens into Practice at Home

Article Outline

• Abstract
• Introduction
• Methods
  • Design
  • Sample and Settings
  • Data Collection
  • Data Analysis
• Results
  • Obtaining Prescribed Medication(s)
  • Difficulty Accessing Information
  • Difficulty Tailoring Prescribed Regimens to Meet Individual Needs
    • Difficulty finding the optimal combination of medications
    • Difficulty finding the optimal dose
    • Difficulty finding the optimal timing for pain medications
  • Difficulty Managing Side Effects
  • Difficulty with Cognitively Processing Complex Information
  • Difficulty Managing New or Unusual Pain
  • Difficulty Managing Multiple Symptoms Simultaneously
• Discussion
  • Study Limitations
  • Policy Implications
  • Implications for Future Research
  • Implications for Clinical Practice
• Acknowledgements
• References
• Copyright

Abstract 

The purpose of this study was to describe the difficulties with pain management that patients and family caregivers bring to a nurse's attention during a teaching and coaching intervention. Data were obtained from audiotaped and transcribed interactions between intervention nurses and patients (n = 52) and their family caregivers (n = 33) who were participating in a randomized clinical trial of a nursing intervention called the PRO-SELF© Pain Control Program. Using qualitative content analysis, we found that patients had difficulty in seven areas when they attempted to put a pain management regimen into practice, namely: obtaining the prescribed medication(s), accessing information, tailoring prescribed regimens to meet individual needs, managing side effects, cognitively processing information, managing new or unusual pain, and managing multiple symptoms simultaneously. The findings from this study suggest that the provision of information about cancer pain management to patients and their family caregivers is not sufficient to improve pain control in the home care setting. Patients and their family caregivers require ongoing assistance with problem-solving to optimize their pain management regimen.

Keywords:  Cancer pain, barriers to pain management, bone metastasis, pain management at home, side effects

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Introduction 

Patients and their family caregivers play a critical role in cancer pain management.¹ Because most aspects of both curative and palliative care now take place on an outpatient basis, pain is managed primarily at home.² Thus, patients and their family caregivers must be skilled in the utilization of pain management regimens. Researchers have described barriers to adequate pain management, such as fears of addiction and tolerance, concerns about side effects, and lack of knowledge.², ³, ⁴, ⁵, ⁶ However, little systematic investigation has been directed toward understanding the practical day-to-day problems encountered by patients and their family caregivers as they take on complex pain management regimens at home.

Nurse-patient-family caregiver interactions, audiotaped as part of a randomized clinical trial (RCT) of a nursing intervention called the PRO-SELF© Pain Control Program, provided a rare glimpse into the day-to-day issues around pain management that patients and family caregivers discussed with nurses. Originally, these intervention sessions were audiotaped to assure the consistency of the intervention. However, initial quality assurance reviews revealed that the tapes were a rich source of data about patients' experiences with managing pain at home. Thus, we applied for and received supplementary funding from the National Cancer Institute to transcribe these recordings and conduct a qualitative analysis of their content. The research questions guiding the qualitative analysis were: (1) What difficulties with pain management do patients and family caregivers bring to a nurse's attention during a teaching and coaching intervention? and (2) What strategies do patients and their family caregivers use to manage pain at home?

A review of the literature suggests four critical requirements for effective pain management, each of which has been a focus for intervention. First, health care providers must know that a patient is having pain.⁷, ⁸ Provider awareness of a patient's pain depends upon adequate assessment by the provider,⁹ as well as the patient's willingness to report pain.¹⁰ However, lack of complete assessments continues to hamper pain control¹¹ and oncology patients are reluctant to report pain for fear of distracting the provider from the goal of disease treatment, concern about not being a “good patient,” and fear that pain indicates disease progression.⁴

The second critical requirement for effective pain management is the prescription of an effective pain management regimen. The World Health Organization (WHO) report on cancer pain relief¹² and the Cancer Pain Guideline published by the Agency for Health Care Policy and Research (AHCPR)⁹ provide detailed recommendations on appropriate pain management regimens for use across the continuum of cancer pain. Despite the availability of these guidelines, lack of provider knowledge about pain control and the constraints imposed by a restrictive regulatory environment inhibit appropriate prescription of analgesic medications.¹³, ¹⁴

The third critical requirement is patient willingness to use a pain management regimen to its optimal effect. Research has shown that patients tend to use less pain medication than was prescribed.¹⁵, ¹⁶, ¹⁷, ¹⁸ Barriers to the use of prescribed analgesics are well documented and include fear of addiction and tolerance, concerns about side effects, and stoicism or the belief that pain should be tolerated without complaint.³, ⁴, ¹⁹

Finally, once patients decide to use a prescribed regimen, they must have the knowledge and skill needed to put it into practice at home. Many patients have inadequate knowledge about pain management, unrealistic concerns about the use of analgesics, and beliefs that are contrary to the principles of effective pain management.³, ⁶ Even after the provision of routine education and instruction, overall pain knowledge may remain poor.¹⁰

Interventions to improve pain control include the development of practice guidelines and provider education,⁹, ¹⁵, ²⁰ as well as patient education about the principles of pain management, common myths about opioids, the use of pharmacologic and nonpharmacologic methods of pain control, the aggressive management of side effects, and communicating with health professionals.¹⁰, ¹⁶, ²¹ However, for reasons that are not fully understood, some patients continue to have difficulty adhering to pain management regimens even after intensive educational interventions. Clearly, we lack a full understanding of the complex phenomenon of pain management at home.¹⁵

In spite of considerable research on pain control, one area that has received virtually no attention is the process of pain management by patients and their family caregivers. Ferrell and colleagues¹, ² described the extensive involvement of family caregivers in pain management and the concerns of both patients and family members, but the self-care and caregiving processes of pain management have not been described systematically. Thus, we know very little about how patients and their family caregivers put pain management regimens into practice after receiving a prescription and initial instructions. Such knowledge is essential for optimal pain management and provides a basis for future interventions aimed at coaching patients and their family caregivers in the process of pain management. In our qualitative analysis, we found that patients experienced various difficulties with the day-to-day process of using their pain management regimens even after they overcame any initial reluctance to use analgesic medications and were instructed on how to use the medication. Thus a major category that emerged in the qualitative analysis was termed difficulties putting a pain management regimen into practice. These difficulties are described in this manuscript.

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Methods 

Design 

The qualitative analysis reported here was part of a large RCT that tested the effectiveness of a self-care intervention called the PRO-SELF© Pain Control Program. Study design and methods are described in detail elsewhere.¹⁷, ¹⁸ The PRO-SELF© intervention was delivered over the course of six weeks and included home visits at Weeks 1, 3, and 6 with follow-up telephone calls during Weeks 2, 4, and 5. Patients in the intervention group received detailed education about the principles of pain management and individualized coaching about how to manage their pain. The control group received standard care, including the consumer version of the AHCPR clinical practice guideline on cancer pain management.⁹ Both groups were stratified according to whether the patient was participating alone or with a family caregiver.

The qualitative component of the study consisted of an analysis of verbatim transcripts of audiotaped nurse/patient/family caregiver interactions during the three home visits, the nurses' field notes, and their telephone logs. Only data from the PRO-SELF© group were used for the qualitative study because the control group did not receive the individualized assessment and coaching needed to understand fully patients' and family caregivers' experiences with managing pain at home.

Our analytic method was a variation of content analysis we termed clinical content analysis. This approach differed from traditional content analysis²², ²³ in that the data were generated in the context of a clinical interaction rather than through a research interview. The content of a given clinical interaction was highly individualized and varied considerably from patient to patient. Thus, the topical content of an interaction was determined by patient need rather than by an interview guide. The data revealed the diversity and complexity of problems related to cancer pain management encountered in clinical practice.

Sample and Settings 

Patients were recruited from seven outpatient settings in Northern California. Participants were adult oncology outpatients over 18 years of age who were able to read, write, and understanding English. All had radiographic evidence of bone metastases, had average pain intensity scores ≥2.5, and had Karnofsky Performance Status (KPS) scores ≥50.

A subsample (n = 52) was selected from the PRO-SELF© group (n = 115) for the qualitative analysis. Purposive sampling was used initially to insure variability in diagnosis, stratification arm (i.e., patient alone or patient/caregiver dyad), site, intervention nurse, patient ethnicity, and socioeconomic status. Later in the analysis, theoretical sampling was used to select patients who were experiencing ineffective pain control in order to better elucidate the difficulties they were having with pain management. Ineffective pain management was defined as weekly mean worst pain scores of 5 or above or if a patient voiced dissatisfaction with his or her level of pain control. The cut-off point of 5 was chosen because pain of this intensity or greater has been found to interfere with daily functioning.²⁴, ²⁵ Thus this analysis focused on the effectiveness or ineffectiveness of pain management, rather than on patient adherence to a prescribed analgesic regimen. The rationale for our approach was that sometimes patients were having little pain, even though they were using less than the prescribed amount of their basic analgesic or were using their medication on an as-needed basis rather than on an around the clock basis as prescribed.

Data Collection 

The audiotaped nurse/patient/family caregiver interactions were semistructured clinical encounters in which study nurses implemented the PRO-SELF© intervention. The nurses provided education about pain management, reviewed patients' pain logs, and engaged in problem solving around difficulties with pain management. Although the educational portion of the intervention was structured and consistent across the sample, the problem-solving portion of the home visits was tailored to each patient's individual needs. Analysis of the problem-solving interactions provided insight into the wide range of concerns, issues, and practical difficulties that patients experienced with pain management at home. Data from the audiotaped home visits were supplemented with the nurses' field notes and logs of telephone contacts at Weeks 2, 4, and 5.

Data Analysis 

An inductive approach to content analysis was used to generate a typology of difficulties with pain management.²², ²³ Rather than using a researcher-generated a priori coding scheme, categories of difficulties were allowed to emerge from the data through line-by-line coding of interview transcripts and grouping of related codes into larger categories. Extensive memo writing, including written summaries of each participant's experience with pain management, was used to facilitate researcher immersion in the data.

Consistent with established standards of rigor for qualitative research,²⁶, ²⁷, ²⁸ extended data samples, the emerging codes and categories, and written summaries were shared with research team members periodically during the analysis. This qualitative research procedure reduces the risk that researcher bias will permeate the analysis and allows peers to evaluate the fit between the analysis and the raw data. These procedures were continued until the categories were saturated and no new information was emerging from the data. At this point, the findings were summarized in a preliminary report, which was circulated to research team members, including the PRO-SELF© intervention nurses. All team members were asked to evaluate the logic, consistency, and completeness of the analysis. The PRO-SELF© nurses were asked to focus especially on the fit between the analysis and their clinical observations and the completeness of the analysis in relation to difficulties they had identified themselves during interactions with patients and family caregivers. Concurrently, with the review by researchers and intervention nurses, the principal analyst read 15 additional interviews to test the categories against new data and search for any additional information not yet incorporated into the analysis. These verification procedures supported the categories described below.

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Results 

The demographic characteristics of the patients and family caregivers are listed in Table 1. In general these patients were middle-aged, female, had at least two years of college education, were married or partnered, and did not live alone. The disease and treatment characteristics of the patients are listed in Table 2.

Table 1. Demographic Characteristics of the Patients and Family Caregivers

Table 2. Disease Characteristics of the Patients (n = 60)

The process of putting a pain management regimen into practice consisted of seven subprocesses: 1) obtaining the prescribed medications; 2) accessing information; 3) tailoring the prescribed regimen to meet individual needs; 4) managing side effects; 5) cognitively processing and remembering complex information; 6) managing new or unusual pain; and 7) managing multiple symptoms simultaneously (Table 3). Difficulties with one or more of these subprocesses was the focus of the coaching component of the PRO-SELF© intervention. Difficulty with any one subprocess could lead to ineffective pain control. An important characteristic of difficulties with pain management is that they occurred throughout the study time frame. Thus, problem-solving was not a simple, linear process in which difficulties were identified, addressed, and resolved. Rather, problem-solving was an ongoing process of assessment, strategy generation, evaluation, and modification.

Table 3. Processes Involved in Putting a Pain Management Regimen into Practice

Obtaining Prescribed Medication(s) 

Difficulty obtaining the prescribed medication(s) resulted from either reimbursement barriers or lack of availability of the analgesics at pharmacies. For example, one patient could obtain neither a prescribed long-acting morphine preparation nor the transdermal fentanyl patch because these analgesics were not covered by his Medicare-supplemental policy. As he said:

I don't know how we're gonna get that (his pain scores) changed because we really haven't got the money to change this thing and now we've burned up our allotted year. So I just don't know what the hell we're gonna do. A guy can say you should take this and you should take that, but if you haven't got the money to get it, that's trouble.

His baseline average and worst pain scores were 5.7 and 7.3 respectively. By the third intervention visit, he had begun receiving hospice services and was obtaining his analgesics as part of the hospice benefit. The weekly means of his average and worst pain dropped to 3.3 and 4.7, respectively.

Other patients had difficulty obtaining prescribed medication from their pharmacies, even when it was covered by their insurance. One patient described the following frustrating chain of events after getting a new prescription for an exacerbation of her pain. She took a prescription for a new analgesic (i.e., immediate-release oxycodone) to her pharmacist (at Pharmacy A), who said he had never heard of it and had no listing for it. She had seen a brochure for the medication in her oncologist's office, so she knew it should be available. She went to two other pharmacies, where she again was told that they did not have the medication. She returned to her oncologist to get a different prescription and found out that a particular pharmacy he knew of (Pharmacy B) had the medication. At Pharmacy B, she was told that they would have to back order it. She returned to Pharmacy A to have it ordered, but only the manager could order opioids and it was the manager's day off. She became frustrated and decided to have all of her prescriptions changed to Pharmacy B. However, she found that although Pharmacy B could obtain the medication, back-ordering it would take a week, so she decided to stick with Pharmacy A and wait until the manager came back. By then, her triplicate prescription had expired. This process required an extraordinary amount of time and energy for a woman who had substantial pain from bone metastases.

Difficulty Accessing Information 

Patients and family caregivers had difficulty accessing both basic information about pain management and practical information about the use of specific analgesics. Referring to the PRO-SELF© teaching booklet one patient said, “That was the first time we had learned … maybe 50% of the information in there we were learning for the first time. And we were a little bit shocked that our doctor hadn't given us that basic information.” His wife/caregiver said:

Well, it teed us off. You start people on these drugs that need to be taken seriously and given respect and don't give people basic information… It's shocking and in fact when we started on the fentanyl patch, it comes with, it's like a pea of information inside the box, but nothing tells you to put it above the nipples and on the arms or on the back and not over the heart. Nothing! Nowhere! And nor did the doctor's office tell us that. Nor did the pharmacist tell us that. It's like, the hospice nurse told us. And fortunately we had done it right, but it was sheer, dumb luck! Cause I was going to put it on his bum, you know, where the estrogen patches go. I thought, oh yeah, well it says some place that isn't hairy. Well, this looks like a good place. She [the hospice nurse] says, “No this has to be above the nipple.” And I thought, aah, cool. Nothing tells you that. Nobody.

Access to well-informed nurses was a problem for some patients and their family caregivers. As one man said,

The nurses at my particular oncologist … they're medical assistants. She really doesn't know much about diddly, so wouldn't do good to ask her. And the nurses that did the infusion therapy, they say, ‘Well, just leave it up to the doctor to order your medications.’

Another family caregiver said: “I'm learning now that the doctors and the nurses are really in a hurry most of the time, so you're just getting snatches of information, when you can catch them.”

Inaccurate information was a problem for some patients. For example, one patient was discouraged from using the transdermal fentanyl patch by his physician who “didn't really have a lot of faith in it.” This physician said he did not know what effect it would have on the patient's bone cancer. The patient acknowledged that his oncologist favored using the transdermal fentanyl patch, but said he already had a negative mind set about it as a result of his discussions with the first physician.

A radiation oncologist suggested to another patient that he replace his opioid with an antiinflammatory medication. The patient tried to do so, unsuccessfully, and resumed using a mild opioid. However, the family caregiver said, “I think he kind of planted the seed in his mind (that) well, you should try not to take so much.” The seed that had been planted apparently had taken root, as evidenced by the patient's efforts to take as little medication as possible and his periodic attempts to taper himself off his opioid analgesic. Another patient worked for a physician who told her that the pain she was having in her bones was good for her because it indicated that the treatment was working. The physician told her not to “eat too many pain pills—let the pain kill the cancer.” Patients received diverse professional opinions about pain management and had to sort out which line of action to choose.

Difficulty Tailoring Prescribed Regimens to Meet Individual Needs 

Tailoring pain management regimens to meet individual needs required consideration of the pharmacologic properties of various analgesics and patients' unique biologic responses, as well as patients' subjective perceptions of pain and pain relief, lifestyles, daily patterns of activity, and priorities. Difficulties with tailoring a prescribed regimen to meet individual needs occurred in finding the optimal combination, dose, and/or timing for medications and/or complementary measures.

Finding the optimal analgesic or combination of analgesics sometimes took considerable time, as patients tried first one and then another pain management regimen. During this time they often experienced severe pain. As one woman said:

I was really close to a wheel chair. Really immobile and in just tremendous pain until they found something that would work for me because I tried patches and I tried some other stuff and they just didn't work for me.

Her family caregiver said, “We sampled through just about everything out there.”

Some patient's baseline pain was managed effectively, but they were having difficulty managing breakthrough pain. For example, one patient had very little pain at rest with the use of transdermal fentanyl patches. His weekly averages of average pain scores ranged from 2.7 to 4.3. However, he had severe breakthrough pain with activity and consequently his weekly averages of worst pain ranged up to 8.3. Travel for his medical appointments, which required going down two flights of stairs, getting in and out of the car, and sitting for extended periods of time in a wheelchair, caused excruciating pain. He and his family caregiver were afraid to use liquid morphine for breakthrough pain because they feared he would become drowsy and fall on the stairs.

Many patients had difficulty titrating dosages within the parameters of their prescriptions. Achieving effective pain relief required an understanding of how to apply the principles of pain management that nonprofessionals typically do not have. For example, one patient tried to manage breakthrough pain by use of an additional transdermal fentanyl patch, but found that that approach made her too sleepy. The PRO-SELF© nurse suggested gradually titrating her dose upward with an oral preparation, before going to the next dose of transdermal fentanyl. Another woman accurately realized that she should not exceed a maximum daily amount of oxycodone with acetaminophen. However, she had miscalculated the ceiling dose for acetaminophen and thus was under-medicating herself. She understood the principle of maximum daily doses, but was not able to independently apply the principle to her own situation.

Related to finding the optimal dose of a medication was simply taking the intended amount. One participant took a whole tablespoon of liquid morphine, believing that pouring it in a spoon would be the same as using a syringe. As she said, “I was figuring if I just pour it in that spoon, it would be the same as the syringe, but it wasn't.” Because she experienced vomiting and sedation after taking a tablespoon of liquid morphine, she refused to take it again. Rather, the next time she experienced breakthrough pain she took an extra dose of her long-acting, controlled release morphine. She was attempting to engage in problem-solving around pain management, but she lacked the understanding of the principles of medication use needed to effectively control her pain without professional guidance.

Individualizing the timing of analgesic use was a key component of tailoring pain management regimens. Difficulty finding the optimal timing for medications was especially apparent in managing nighttime and early morning pain. Some patients experienced nighttime or early morning pain, but did not relate it to the need for a higher bedtime dose of their analgesic. They reasoned that they were sleeping through most of the night and thus did not need to take a larger bedtime dose or boost their analgesic level during the night. However, they awoke in pain and were uncomfortable until the morning dose took effect. For example, one patient had a morning headache, but did not relate it to the need to take a long-acting analgesic at bedtime. She was taking oxycodone with acetaminophen in the evening until the nurse suggested that she take a longer acting preparation at bedtime. As she said:

I just realized the reason I'm not getting through the night too good is I need the pills. If I don't take them through the night, I'm uncomfortable at night. And when I take them, my comfort comes back and I am able to sleep better all night. Same as it is during the day, basically.

Nurse-coaching related to tailoring pain management regimens consisted of problem-solving around individual responses to the medications, and progressively modifying the regimen as needs changed and patients gained experience with the use of the medications and familiarity with their individual responses. The coaching process was complicated by the dynamic nature of the metastatic bone pain. The goal of effective pain management was a moving target such that even as patients found an effective approach, the nature of the metastatic bone pain could change as a result of disease progression or response to treatment. Thus, tailoring a prescribed regimen to meet individual needs was a complex, dynamic, and ongoing endeavor.

Difficulty Managing Side Effects 

Concurrently with using a pain management regimen, patients had to manage a variety of side effects, the most troubling of which was constipation. As one patient said, “constipation killed all my insides, nothing wanted to work.” Accordingly, she reduced her opioid dose to an ineffective level. Another patient “almost had a blockage” and had to go to the emergency room. Preventive teaching about constipation occurred inconsistently. As one patient said, “Nobody told me this would happen.” When asked by the PRO-SELF© nurse if her physician had talked with her about constipation, another patient said, “No, we talk politics and sports.”

Some patients experienced a “cascade effect,” in their efforts to manage side effects. They reported developing additional side effects from the measures taken to manage the analgesic side effects. For example, a number of participants developed diarrhea after using a laxative to manage constipation. As one patient said,

It will not work if I don't take that (Milk of Magnesia). I'll just keep piling it up and piling it up and then I get such a rough time. I have to take the Milk of Magnesia, the stool softener, the suppositories; I use KY jelly and everything else. So it's a mess. Just look out, don't stand around me and try to talk. It might hit the ceiling; it might hit you in the eye. You never know. It's coming out and it'll come out with pressure.

Difficulty with Cognitively Processing Complex Information 

Putting a pain management regimen into practice required cognitively processing and remembering complex information. Several patients complained of difficulty thinking analytically and/or of difficulties with memory that affected problem solving around pain management. Others complained of confusion, of difficulty focusing, or of “feeling not with it.” For example, one patient had trouble following the nurse's reasoning about asking her physician for a new prescription. She had reached the maximum dose on her current prescription, but was still in pain and needed a new prescription for a higher dose. The nurse engaged her in a long discussion about the need for a new prescription, but the patient did not seem to grasp the concept. She dealt with being “maxed out” on her current prescription by cutting back from 8 tablets a day to 6. Her reasoning was that at 6 tablets a day she was no longer “maxed out” on the prescription. However, her pain scores went up to 8 and 9. Also, during the third home visit, after extensive instruction, she asked the PRO-SELF© nurse whether she should stop taking the tablets if she took liquid morphine. She still had not been able to grasp the concept of supplementing an around-the-clock regimen with liquid morphine for breakthrough pain. She frankly acknowledged that she was having difficulty with her memory. Of note is the fact that this patient had brain, liver, and lung metastases in addition to painful bone metastases. Although she was trying to manage her pain medication regimen, she was not able to grasp the principles of pain management well enough to engage in independent problem solving.

Difficulty Managing New or Unusual Pain 

Some participants managed “usual” pain successfully, but when their pain deviated from an established pattern, they were uncertain about what to do and in most instances did not change their behavior in response to the new pain. For example, one participant, whose baseline pain was effectively managed, experienced severe and unexpected pain after a chemotherapy treatment. As her family caregiver said,

One Sunday was horrible. She lay there all night long with tears in her eyes. It was at a point I was going to take her to the emergency room.

Rather than going to the emergency room, the patient chose to “ride it out” at home.

Difficulty Managing Multiple Symptoms Simultaneously 

Some patients experienced multiple symptoms related to cancer and its treatment, and found that the compounded effects “snowballed,” into multiple symptom distress. As one patient, who was experiencing pain, hot flashes, and sleeplessness as a result of cancer treatment and bone metastases, said,

On Tuesday morning I could have wrung my sheets out. And I never got out of bed until 2 o'clock that day. I was sick, nausea. I was tired. I had pain. I was getting hot flashes. I just stayed in bed till 2 o'clock in the afternoon. I can't afford to go without sleep … It breaks you down every which way. It snowballs, you know.

Other patients had chronic illnesses other than cancer and had to manage numerous concurrent symptoms related to multiple diseases and therapies. One patient had pain, low energy, mental fogginess, confusion, difficulty concentrating, loss of coordination, anxiety, and difficulty sleeping. In addition to cancer, for which he was receiving chemotherapy, he had Parkinson's disease, for which he was being treated with two medications. His anxiety was treated with lorazepam and his pain was treated with an opioid. While increasing his opioid dose to better control his pain, he simultaneously was decreasing one of the medications for his Parkinson's disease and increasing the other. The difficulty he faced in symptom management was sorting out causes and effects among the symptoms of two major chronic illnesses and the side effects of multiple medications.

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Discussion 

This qualitative study focused on patients' and family caregivers' experiences with putting pain management regimens into practice at home. Study participants were part of a RCT of a pain education program called PRO-SELF© Pain Control, which consisted of structured education followed by coaching for self-care and caregiving tailored to individual needs. Data for the qualitative analysis were obtained from audiotaped in-home intervention sessions supplemented by telephone logs and field notes. Although barriers to optimal pain management have been identified⁴, ²⁹, ³⁰, ³¹ and the need to titrate analgesic doses, prevent side effects, and so forth are well described in clinical literature,³², ³³, ³⁴ this is the first time that difficulties with pain putting a pain management regimen into practice, as told by patients and family caregivers, have been systematically categorized. These practical difficulties have not received sufficient attention in previous intervention studies.

In another RCT by Du Pen and colleagues, the researchers found that “patient adherence (was) problematic across the board, with no definitive way to categorize or define the issues.”¹⁵ They note their plan to include a post-study interview with qualitative data analysis to further examine analgesic adherence in future studies. By categorizing the practical difficulties that patients and their family caregivers encounter as they attempt to put prescribed pain management regimens into practice at home, our study contributes to knowledge about outpatient pain management. These difficulties appear to be one factor among many that contribute to less than optimal pain management among people with cancer.

As researchers move to the next generation of intervention studies and seek to further develop the content of pain management interventions, knowledge development about patients' experiences with pain management at home is essential. Previous intervention studies have demonstrated the efficacy of educational interventions,¹⁰, ¹⁶ yet in each study, some patients did not achieve optimal pain control despite the intervention. In the present study, qualitative analysis of nurse/patient/family caregiver interactions provided the researchers with a deeper understanding of the content and scope of the PRO-SELF© intervention, which will, in turn, lead to more specific guidelines for implementation of the intervention in the future. Our results suggest that pain management interventions should include assessment and problem-solving specific to practical difficulties that patients experience. Looking across intervention studies, a three-pronged approach to intervention seems to be emerging. Issues to be addressed in such an approach are knowledge, attitudes, and the process of putting a prescribed pain management regimen into practice.

Only one other study,³⁵ which documented that deciding which pain medicine to take, how much to take, and when and how to take it preoccupied both patients and family caregivers, addressed the practical, day-to-day issues that arise in putting a pain management regimen into practice at home. Our data support these earlier findings and suggest that patients experience an even broader range of practical difficulties. More importantly, this study provides new evidence that these difficulties lead to ineffective pain control.

A surprising finding is that fears of addiction, dependency, and tolerance were not the predominant concerns voiced by patients in the coaching portion of the intervention. Although patients had many misconceptions about the effects of opioid analgesics, reflected in scores on a knowledge test (Miaskowski et al., in preparation) as well as in the narrative data, these misconceptions typically did not present insurmountable barriers to opioid use after the structured educational session. With support from the PRO-SELF© nurses, many patients increased their opioid dose. However, difficulties with the process of putting a prescribed regimen into practice were not overcome by structured education alone and required the nurse to serve as coach in the practical, day-to-day management of pain. Given that patients and family caregivers play a central role in the effective management of cancer pain,¹, ² understanding pain management from their perspectives of critical importance. This study provided a rare opportunity to analyze verbatim accounts of difficulties as described by patients and family caregivers to nurses in a clinical context.

Of note is the fact that the majority of the patients in this study were ambulatory outpatients who had experienced unrelieved pain for over six months. Eighty-six percent of the sample was receiving active treatment for cancer in the form of chemotherapy, radiation, or hormones. Thus two key findings from this study are 1) Patients need ongoing education and coaching over the whole course of the pain experience and 2) Patients need help with managing pain not only during end of life care, but as early in the disease trajectory as pain occurs.

The fact that difficulties occur in such a broad range of pain management processes indicates the complexity of pain management at home. Researchers in diverse clinical contexts are increasingly appreciating the complexity of symptom management by patients and family caregivers. For example, in writing about the management of cystic fibrosis symptoms, at home, Parcel and colleagues³⁶ noted that:

Effective management (of CF) is more complex than simple compliance with a prescribed health care regimen. Patients and their families must routinely monitor symptoms and interpret changes as a basis for modifying the frequency and type of therapy. The patient and family must also know how to contact and communicate effectively with their health care providers regarding changing symptoms or conditions. Families must adjust to time, energy, and resource requirements in order to perform many of the home therapy treatments. Thus, a series of skills related to monitoring, decision-making, communication, and coping is required to enable patients and families to perform self-management behaviors (p. 1307).

We found similar complexity in that effective pain management required finding the right combination of medications, in the right dose, at the right time, and making modifications as analgesic needs changed. Further, side effect management had to take place concurrently and patients/family caregivers needed practical information specific to their unique needs in addition to more general education about pain management principles. Our analysis underscores the centrality of longstanding hallmarks of effective pain management, but also suggests that putting them into practice at home is more complex than researchers have previously appreciated.

Accessing accurate information continues to be a major problem in home management of cancer pain more than a decade after Wingate and Lackey³⁷ identified information as the area of greatest need expressed by cancer patients and family caregivers. The particular type of information that is needed is practical advice about day-to-day pain management practices. Lacking such practical information, patients learn how to put a pain management regimen into practice through trial and error. After the detailed educational intervention during the first PRO-SELF© home visit, patients still needed coaching and practical advice about how to put these principles into practice and how to individualize them to meet their own pain management needs. During the PRO-SELF© intervention, such coaching was provided over a five-week period following the initial educational session.

Tailoring pain management regimens to individual needs involves the flexible use of multiple pharmacologic and nonpharmacologic pain management strategies. Thus, pain management regimens differ from other medication regimens, such as courses of antibiotics, with which patients may be more familiar. Rather than strict adherence to a standardized regimen, pain management requires ongoing problem-solving with adjustments and modifications made as needed to meet patient's desires, needs, and priorities. Even within the “gold standard” of pain control (i.e., an around-the-clock long-acting analgesic supplemented with a short-acting preparation for breakthrough pain) clinicians have considerable latitude in prescribing decisions and patients have considerable latitude in the use of analgesics. Yet little is known about how patients make decisions regarding analgesic use. The findings from this study provide some insight into the decision-making process, but additional research is needed to determine the nature and complexity of decision-making by patients and family caregivers.

Fear of side effects is a well-known barrier to the use of opioids for pain control.⁴ We found that patients not only fear side effects, but also have difficulty managing them when they occur. Managing constipation was especially difficult. In addition to being a barrier to initiating opioid use, constipation can interfere with optimal pain control after patients begin taking an opioid. Further, a cascade effect may compound patient discomfort when aggressive self-medication with laxatives leads to diarrhea and ultimately to an anti-diarrheal regimen. Difficulty managing constipation and the resulting cascade of self-care measures and side effects were too often precipitated by lack of anticipatory preparation. It is well known that constipation is a common opioid-induced side effect. Therefore, it is unacceptable to provide an opioid-based pain management regimen without concurrently providing patients with an effective constipation management regimen.

Only a few patients experienced difficulty with managing new or unusual pain at home, but the impact of these difficulties was considerable. Even with severe pain, patients often adopted a “wait-and-see” approach, thus delaying clinician awareness that the nature of their pain had changed. This finding suggests that patients need a benchmark for calling about pain, much as they have for calling about clinical signs such as fever. In this study, health care providers intervened immediately when they realized that patients were experiencing new pain. However, during the interval between the onset of a new kind of pain and clinician awareness of it, considerable patient suffering and family caregiver worry occurred. Patients need very specific instructions about when to call, such as, “I expect to hear from you immediately if your pain ever gets worse than 7,” rather than general encouragement to call, such as, “call me if you have any problems.”

Described for the first time in this study is the self-care difficulty posed by multiple side effects resulting from concurrent opioid pain management and cancer treatment. Although the frequency with which patients experience such difficulty is unknown, it may apply to the 50% of oncology outpatients who are undergoing active treatment for their cancer at the same time they are experiencing cancer-related pain.²⁴ The use of a diary to log all symptoms may facilitate the identification of patterns of multiple symptoms associated with analgesics and various cancer treatments. By determining specific patterns to these side effects, clinicians may be better able to determine the etiology of the side effect(s) and initiate more appropriate interventions.

In summary, this analysis indicates that putting a pain management regimen into practice is an ongoing problem solving process in which a variety of difficulties with pain management may be encountered and must be dealt with. Obtaining an analgesic prescription is just one step in the process. Likewise, receiving instruction about the use of the prescribed analgesic is only one part of a larger process. Putting a pain management regimen into practice requires ongoing, coached problem solving based on a solid foundation of comprehensive pain assessment, appropriate medication administration, and education about the principles of pain management.

Study Limitations 

A limitation of the qualitative component of this RCT was that it did not lend itself to quantification of difficulties with pain management. Thus, we were not able to calculate meaningful frequencies for each difficulty. Accounts of difficulties arose spontaneously in the intervention sessions and the typology of difficulties developed by the researchers was generated inductively from these accounts. Because patients were not queried using a structured inventory of difficulties, the extent to which they experienced difficulties that they did not voice is unknown. Although assessing the prevalence of these difficulties is a desirable research objective, valid quantification would require a priori identification of questions to be administered consistently to all study participants. The typology developed inductively in this study could be used for such research in the future.

Policy Implications 

Ongoing access to clinicians who can coach patients at the initiation of pain management regimens and at critical periods when analgesic needs are changing is essential for adequate pain control. As access to qualified clinicians becomes more and more tightly controlled, health policy makers must be aware of the limited effectiveness of brief periods of education about pain management. Effective pain management is not simply a matter of following instructions. Rather, it is an ongoing problem-solving process that requires skill development in addition to basic information about pain and its management. Adequate pain management takes time.⁷, ³⁸ Time is needed to thoroughly assess self-care behaviors used by patients and family caregivers at home, to evaluate the effectiveness of these behaviors, and to engage in problem-solving for optimal pain control. Health care policies must insure access to sufficient time with health professionals for the coaching needed to put a pain management regimen into practice.

Implications for Future Research 

The ways in which patients and their family caregivers put a pain management regimen into practice is an understudied area of pain research. Better understanding of this phenomenon is a key to achieving better levels of pain control. Most patients in this study had appropriate pain management regimens prescribed, but had difficulty using them to their full potential. Understanding these difficulties would allow clinicians and researchers to distinguish the few patients who refuse to use a prescribed regimen (“nonadherent” patients) from those who are encountering difficulties with a regimen that can be fully or partially resolved through coached problem solving. Further research is needed to determine how education and coaching by clinicians can assist patients and family caregivers to make the most appropriate decisions and initiate problem-solving strategies that result in optimal cancer pain management.

Implications for Clinical Practice 

The PRO-SELF© Pain Control intervention includes both education and coached behavioral change implemented through ongoing nurse/patient/family caregiver problem solving. Sustained contact with patients and family caregivers, progressive identification of difficulties with pain management, brainstorming about problem solving strategies, and evaluation of the efficacy of strategies employed were key features of the intervention. The findings from this clinical content analysis suggest that clinicians must combine education with coached problem solving. Coached problem solving improves patient and family caregiver skill with pain management and ultimately leads to better pain control.

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Acknowledgements 

This study was supported by a grant (CA 64734) from the National Cancer Institute. Additional support for the corresponding author's program of research was provided through unrestricted grants from Janssen Pharmaceutica and Purdue Pharma LP. The authors would like to acknowledge the support and assistance of all of the physicians and nurses at our study sites as well as our project staff. We are especially grateful to all of the patients and family caregivers who participated in this study. We thank Julie Alden for technical assistance with the preparation of this manuscript.

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