Home > RNJ > 2005 > November/December > There Are a Few Things You Did Not Ask About My Pain: Writing on the Margins of a Survey Questionnaire

There Are a Few Things You Did Not Ask About My Pain: Writing on the Margins of a Survey Questionnaire
Catherine A. Warms, PhD RN CRRN • Helen M. Marshall, BS • Amy J. Hoffman, BS • Erica J. Tyler, BA

This qualitative study is a secondary analysis of comments written on survey questionnaires about pain mailed to community-dwelling persons with spinal cord injury (SCI) or amputation. Narrative comments were added by 54.1% of 797 respondents. The purpose of this study was to determine the characteristics of those who wrote comments and to understand what was being communicated in their comments. A qualitative content analysis was used to identify the major themes, subthemes, and thematic categories in the unsolicited comments. The overarching theme was desiring dialogue with the researcher. Presenting themselves as experts on living with pain because of a chronic disabling condition, respondents described personal experiences of living with pain, coping with pain, and educating others about pain. Examining comments and narratives written in the margins of quantitative survey questionnaires can add value to and extend understanding of survey findings and implications.

To understand persons with disabilities who live with chronic pain several surveys of community-dwelling persons with amputation or spinal cord injury (SCI) were conducted; results are reported elsewhere (Ehde et al., 2000; Ehde et al., 2001; Turner & Cardenas, 1999; Turner, Cardenas, Warms, & McClellan, 2001). Chronic pain was expected to be a significant problem with prevalence in these samples ranging from 52% for back pain after lower extremity amputation to 70%–79% post-SCI. Mean average pain intensity (on an 11-point scale where 0 = no pain and 10 = worst pain imaginable) was 4.9–5.33 for individuals with SCI, 5.1 for phantom limb pain (PLP), 2.7 for residual limb pain (RLP), and 5.2 for back pain in persons with amputation (Ehde et al., 2000; Ehde et al., 2001; Turner et al., 2001).

Pain problems after amputation or SCI include both neuropathic (i.e., abnormal processing of sensory input by the peripheral or central nervous system) and nociceptive (i.e., injury to normal tissues activating pain receptors) types of pain. Studies of secondary conditions associated with SCI report pain as one of the most common conditions (Anson & Shepherd, 1996; Johnson, Gerhart, McCray, Menconi, & Whiteneck, 1998). Pain associated with SCI varies widely in location, intensity, and the degree to which it interferes with life activities. Most people with SCI report pain in more than one location, and this contributes to uncertainty regarding definitions, causes, characteristics, and optimal treatments (Turner et al., 2001). Persons with amputation also report chronic pain as a significant problem (Ehde et al., 2000; Ehde et al., 2001). Lower limb amputation is often followed by the development of PLP and RLP. PLP is defined as painful sensations perceived in the missing portion of the limb, and RLP is pain originating in the residual portion of the limb (Davis, 1993). Both PLP and RLP are common. Back pain is also a problem for people with amputation (Ehde et al., 2001; Smith et al., 1999).

Few reported studies use qualitative methods to gain an understanding of the perspective of individuals living with chronic disabling conditions and chronic pain. Dudgeon, Gerrard, Jensen, Rhodes and Tyler (2001) explored the pain experience of people with mobility limitations. Through a series of in-depth interviews with adults with cerebral palsy, amputation, or SCI, the authors constructed an understanding of pain in the context of physical disability. Pain was described as a part of daily living that demanded lifestyle decisions and adjustments. Three prominent characteristics of pain were its plurality (multiple locations, distinctive descriptions, and differing implications), its mysteriousness (unclear causes and consequences), and its personal nature (difficult to communicate to others). Unlike acute pain due to a specific cause, the chronic pain associated with physical disability is associated with uncertainty and unknowns.

Survey research methodology is appropriate for efficiently obtaining large amounts of specific research data for achieving understanding and for generalizing results to the population from which samples are drawn. What is lacking from survey data is information about participants’ personal experiences and perspectives. As members of the research team conducting the above surveys and preparing survey data for computer entry, we noted innumerable instances of comments or narratives written on the survey documents by participants; those comments varied from a few words to entire pages of comments, clarifications, and stories of personal experiences. Many participants posed their own questions for the researchers, and several clearly stated, “This is what you should be asking…” These questions were a rich source of data on the perspectives of people with pain and disabling conditions.

Clayton, Rogers, and Stuifbergen (1999) undertook a secondary analysis of similar comments written by participants who completed a survey on health promotion and quality of life in multiple sclerosis (MS). Twenty-five percent of their participants (n = 205) provided unsolicited comments and narratives. In their secondary analysis, Clayton et al. (1999) proposed that adding comments and telling stories may be a way for participants to facilitate a personal search for meaning. These individuals with MS were eager to share information that was not specifically asked for or about by the survey researchers. Given a similar body of write-in comments and narratives on a questionnaire about pain in the context of physical disability, we sought to uncover and understand the perspective of this particular group. The comments and narratives were examined with respect to the following questions:

  • What are the characteristics of those who wrote comments and how are they different from or similar to those who did not?
  • What were the major themes in the unsolicited comments?


This study is a secondary analysis of a larger program project titled “Management of Chronic Pain in Rehabilitation” (Ehde et al., 2000; Turner & Cardenas, 1999), which is an examination of comments added to questionnaires sent to persons with SCI or amputation. Amputee participants were recruited from two large facilities in Washington state and through a national advertisement in the Amputee Coalition of America’s magazine. Participants with SCI were recruited from the Northwest Regional SCI System and through advertisements. A total of 855 questionnaires were received from persons with amputation (57% return rate), and 618 questionnaires were received from persons with spinal cord injury (63% return rate). Of the 1,473 total participants, 797 (54.1%) made comments in the margins of their surveys. Of those surveys with comments, 523 (66%) were from individuals with amputation, and 274 (34%) were from individuals with SCI.


Questions on the survey instruments included basic demographic information, disability-specific information, and pain data including location, duration, and description of pain experienced. Questionnaires also included the 7-item Chronic Pain Grade questionnaire to assess pain intensity and pain interference with daily activities (Von, Ormel, Keefe, & Dworkin, 1992). For persons with amputation, pain was differentiated into PLP, RLP, and back pain (BP). Both questionnaires offered blank space at the end for comments.

All questionnaires were reviewed in entirety for written comments. All comments written in complete sentences in the blank space at the end of the questionnaire or throughout the questionnaire were transcribed verbatim and formatted into Atlas/ti®, a software program for analysis of large bodies of textual data. The initial transcription document included 1,019 comments or narratives.

Content analysis using the methods described by Morse and Field (1995) was undertaken. The step-by-step analytic process was as follows:

  1. All four researchers read the entire body of comments and narratives several times.
  2. Individually common domains and themes were identified and noted.
  3. In group meetings, three researchers reviewed the transcribed comments line-by-line, comparing individually identified domains and themes noting agreements and disagreements. Initially all three researchers coded 60% of comments or narratives similarly, and 82% were coded similarly by two of the three researchers. Final coding was done through a consensus process (100% agreement) that included discussing disagreements, defining and redefining codes, and identifying specific sections exemplifying codes.
  4. Codes were added to the Atlas/ti document, and printed outputs were generated for each code.
  5. Further group meetings and a similar consensus process was used to discuss relationships between categories, combine categories with overlap, and eliminate categories with minimal representation.
  6. An audit trail was maintained to document methods, decisions, and choices made in the data analysis.

The fourth author and the researchers who constructed the survey documents reviewed the final coded comments and reread them in the context of the questionnaires to assess validity of coding and conclusions. Interpretations were compared with the other findings from the survey studies to determine coherence with those findings as a method of providing theoretical verification. In qualitative research, coherence applies to the rigor or trustworthiness of conclusions based on the data. It addresses the truth value or credibility of conclusions drawn and the consistency of findings. We also attempted to maintain trustworthiness by maintaining neutrality, applying a consistent research process, attempting to identify biases in the process, and maintaining prolonged contact with informants. (All worked on the other program project research studies conducting telephone or in-person interviews with participants with chronic pain and disabling conditions over 2–5 years.)

The data analysis process clarified a coherent and logical organization of themes. In the initial coding process, 29 preliminary themes were generated. After axial coding had been completed, a single overarching theme with three major subthemes emerged. Three thematic categories clustered within each of the three subthemes.


Demographic, injury, and pain characteristics of those who wrote comments are summarized in Table 1. Most were Caucasian (87.6%), were married (54.6%), had a high school degree or higher education (74.2%), and were not employed (67.6%). Chi-square and t test analyses were used to explore differences between respondents who added comments or narratives and those who did not. Participants who added comments were significantly older (M = 50.80 years, SD = 15.06) than those who did not make comments (M = 46.29 years, SD = 15.53, p < .01). Participants who made comments were also significantly more likely to be female (31%) than those who did not make comments (22%, p < .001). (See Table 2.)

Overarching Theme: Dialogue with the Researchers

The overarching theme was that of desiring a dialogue with the researchers. Respondents critiqued the research questions, the methods of gathering data, and the focus of the research in general. Many clearly presented their positions as experts on their own disability, on living with pain, and on what “needs to be known,” and many expressed appreciation for research efforts.

Advice included critiques of what was being asked, how it was asked, and ways to obtain better results. Many people with SCI expressed concern that the research was focused on pain management rather than a cure for SCI. One person wrote: “So please find some answers to the real question, ‘How do we get quicker nerve regeneration in SCI patients?’” Other respondents expressed concern that the questionnaire did not ask what was important to them. For example, “The survey questions seem to reveal a lack of knowledge of the type of spinal cord injury pain that I have.”

Comments and suggestions revealed a high level of knowledge and sophistication regarding research in general and research about SCI or amputation specifically. Participants offered specific suggestions for adding or improving questions and expressed appreciation to the researchers for asking questions and for listening to responses, and for being allowed to help themselves and others through research participation. The process of completing the questionnaire was beneficial for some participants. “This has been very helpful to me; I would not have known some of these things about myself if not put in a question type mode.” Respondents also indicated they were interested in study results and expected that their involvement in research would lead to new information and helpful treatments.


Three major subthemes were identified: (a) enlightening you about pain, (b) living with pain and disability, and (c) coping with pain and disability. Comments and narratives that fit these categories were also part of the desired dialogue with the researchers, in that each comment was offered as “something else that I think you should know.” (See Table 3.)

Educating You About Pain

Descriptions. Many participants offered detailed descriptions of pain, including its physical sensation and temporal qualities, and many used metaphors. One person with amputation wrote, “Severe restriction like toes are encased in concrete.” Another stated,

The constant electrical hum I feel most of the time when medicated increases to definitely distracting intensity when I miss the amitriptyline dose. The hum becomes more of a ‘jangling’ electricity feeling and expands up the leg. It gets so ‘loud’ that it drowns out the sensation of where the phantom foot is, spatially, so it makes walking more difficult.

Participants with SCI also offered vivid pain descriptions. One participant wrote, “Basically, I feel like I’m sitting in fire all the time.” Another said, “My pain is best described as follows: Dipping my lower half into boiling oil from the waist down…” The temporal pattern of pain encompassed an extremely broad range of frequencies from infrequent and irregular intervals to predictable patterns and duration lasting from a few seconds to days.

Explanations. Respondents offered explanations of the sources and exacerbating factors for their pain. People with SCI commented mostly on health problems and inactivity as exacerbating factors, and people with amputation commented mostly about mechanical factors and prostheses. A typical example from a participant with SCI is,

Pain tends to get worse when I’ve been sitting long periods and when I’m tired. Also if I have a bladder infection, the pain is so intense I am disabled to the point where I can’t function effectively.

In contrast, a typical comment from a respondent with amputation is, “The pain in my legs and hips I think is from the insertion and removal of a steel shaft and screws.” Persons with amputations also identified the prosthesis as a major contributor to pain. One participant wrote,

The pain I experience in my limb is usually caused by pressure on a nerve—resulting from improper fit of prosthesis. . . to date, no doctor or prosthetist has been able to come up with a satisfactory answer.

Another stated, “Almost all my problems as an amputee were related to the fit and alignment of my prostheses… I have never had one that was painless. Several drew blood…” Many people stopped wearing prostheses because of pain and discomfort and many offered advice to other amputees about prosthesis fit and comfort. For example, “ …many amputees… need to know they must shop around if they are not happy with their fit,” and,

Highly recommend amputees get a second, third, or fourth opinion for making a prosthesis. Find someone who has a working knowledge of your lifestyle, as this will probably eliminate 80%–90% of pain problems…

Pain/Health Stories. Participants often chose to share personal stories about their health, pain, and disability. Such narratives were unique to each individual, although many included explanations of how their disability occurred and discussed multiple health problems. Other common story topics were explanations for pain, what could be done after the person was first injured versus what could be done now, and how pain caused the person to change his or her life.

Pain Treatments. The final thematic category was pain treatments. These comments were about medications, physical therapies, exercise, massage and other alternative treatments, and the use of opioid medication and marijuana for pain relief.

Many comments by study participants focused on the use of opioid medications. A participant with amputation said, “Vicodin is the only thing that works at night for me.” An individual with SCI stated, “Codeine, Demerol, and morphine help [me] tolerate pain but do not relieve it.” Similarly another wrote, “Opioid is more volume control than an on/off effect.” Some respondents described that healthcare providers viewed pain medications as addictive and to be used for a short time only. This perceived view placed many patients in the position of having to choose between being seen as drug seekers or living with unrelieved pain. A respondent with SCI commented,

My family doctor… does not want me to be dependent on heavy pain meds, so I am intensely miserable 99% of the time.

Another commented,

Doctors think that I just want to get drugs every time I complain about my hand pain so I’ve learned to live with my pain. It’s not easy, but I have no choice.

Participants also commented on lack of relief, difficulties with side effects, and problems getting treatments. One highlighted lack of relief and problems with side effects as follows: “None of the medications ever helped the pain… all made me drowsy and caused bladder problems.”

Another discussed visits limited by insurance,

A lot of days, got some relief by going to physical therapy and staying in bed. But I can only go 12 times a year for therapy so I have to wait.

Living with Pain and Disability

In addition to describing and explaining pain, most respondents offered personal perspectives on living with and coping with pain and disability. Participants frequently framed their comments as advice for others in similar situations and provided additional information for the researchers. Living with pain and disability incorporated three thematic categories: taking pain as “part of life,” recognizing the effect of pain, and interacting with healthcare providers and healthcare systems.

Pain as “Part of Life.” This thematic category was epitomized by the phrase “always there.” Respondents phrased this idea differently, but the notion of persistent pain being added into the reality of daily living was common. Some typical comments were the following: “It seems I spend almost everyday, all day dealing with pain.” “Every day, to some point, I have pain, I just weather through it.” “If I’m awake, I ache.” Pain intensity rather than the presence or absence of pain becomes a way to judge whether it is a good day (e.g., “It’s not, Do you hurt today, but, How much will I hurt today?”). The experience of daily persistent pain colors perception of the possibility of a future without pain. A typical comment illustrating this was, “I have no hopes of ever truly being pain free.”

Effect of pain. A large number of comments addressed the effect of physical limitations and pain on various aspects of life. Comments tended to cluster around five domains: work and career, finances, social relationships, sleep, and mobility. Most comments about work and career emphasized difficulty in managing both work and pain together, often forcing a choice between working or managing pain.

Pain requires medications. Side effects of meds (drowsiness, lack of concentration, problems relating to others) do not allow substantial gainful employment.

Another said, “If I was pain free I could work 8 hours a day. Due to pain I only work 3–4 hours a day.” In contrast, a few individuals expressed pride in continuing to work despite pain, “Have had a full-time job for 9 years. Haven’t called in sick yet.” For many individuals who are unable to work or who work short hours because of pain and disability, the financial effect can be severe. The following quote illustrates the life and identity-changing effect of one person’s amputation and pain on both career and finances:

I’ve turned from the plant operations manager of a hospital to an old man and his dog who goes to the store for groceries and sits at home. I know my problem, but I’m sure not the same person. Also, I used to make good money, now I live on Social Security and barely make it through the months.

Pain negatively affects relationships, but healthy relationships have a positive effect on pain. One person wrote, “In the last 3 months I find myself short-tempered and impatient with my family.” Another stated, “To quote my wife: ‘My husband’s pain is definitely detrimental to his otherwise pleasing and cheerful personality.’” In contrast, the buffering effect of positive social relationships was frequently mentioned. One woman described her husband as “caring, supportive, and helpful” and stated that this contributed to “helping cope with life.” Being needed by children was another type of social relationship that was most often viewed as a reason to “work through” the pain or “not let it interfere.”

Difficulty sleeping because of pain was a common report. Sleeping problems ranged from “trouble getting to sleep,” to “waking up at night,” to “tossing and turning all night.” One person described a nightly routine of having someone “pull my legs before going to sleep” to help with pain related to his SCI. Overall, comments related to sleep described it as “bad” and frequently disrupted by pain.

Mobility was another life domain changed because of pain. Although both amputation and SCI are disabling conditions that clearly affect mobility, people who commented indicated that having pain added additional constraints to mobility. One person with amputation stated, “I don’t walk with a walker during the day when the pain hits.” Another wrote, “I have no inherent pain. It just comes up when I try to do above a certain level—like walk too far. Walking, it hurts before I am tired.” One respondent expressed concern that allowing pain to limit mobility may not be the best strategy for healthy living. He said, “When I meet amputees, I try to encourage them to exercise, especially walking. I should have pushed myself past the discomfort level to gain walking ability sooner.”

Health care. Respondents had a lot to say about their encounters with healthcare providers and healthcare institutions. Many of the comments were expressions of appreciation for care received from specific individuals or specific organizations. Several people expressed thankfulness for having their lives “saved” and for receiving competent care related to their injury. Because the questionnaire focused on pain, many people expressed dissatisfaction with pain treatment received or a complete lack of treatment for pain. One person stated, “The … pain management inpatient treatment focuses too strictly on living with pain rather than treating or alleviating pain.” Another stated, “Years ago I quit discussing it with doctors because of their apparent indifference.” Several commented that healthcare providers consulted did not have knowledge of their specific condition (amputation or SCI) and this lack of knowledge resulted in poor management of their pain. A typical example is the following:

The doctors at the emergency room… responded to the injury by telling me that they wouldn’t do anything to correct it because of my paralysis—they were unconcerned.

In contrast, one person described working in partnership with a physician to find optimal pain management.

Some of the medications I am taking… are experimentation to see what would work. My doctor and I are willing to try newer or other medications and stop what I am taking to help find out more about phantom pain and hopefully get a good perspective.

Coping with Pain and Disability

Mental health. Participants wrote often about depression. One said,

First year depression from constant pain. I was not a very nice person!! Personality change. Negative defeated attitude, but kept up a very good front—dying inside.

Another wrote,

I now wonder how many amputees have suffered in this way—the depression was more devastating to me than the amputation. However lots of therapy and crying got me over the hump.

A participant with SCI commented,

Depending on mental state, pain is debilitating or bearable. I am never without pain. Pain has caused severe depression requiring drugs and counseling.

Other psychological problems mentioned by participants included anxiety, emotional adjustment problems, anger, feelings of guilt, and alcoholism.

Relationship to pain. This category of comments included ways to cope with pain and feelings and attitudes toward pain. Most related to adjustment and making life changes to incorporate pain.

Coping strategies. Staying active or modifying activity level is one coping strategy often implemented. Activities varied from working, volunteering, caring for one’s self, doing house and yard work, and participating in recreational activities such as playing sports, exercising, and traveling. One participant with an amputation said, “I do everything for myself—move furniture, shampoo carpeting, vacuum, clean, wash clothing, etc.” Another stated, “I have never let it interfere with my activities however. I play football, wrestle, and lift weights. I stay quite active.” A participant with SCI wrote, “I am quite active. I work out at a wellness center 3–4 times a week, fish, ski, swim, and kayak.”

Some respondents discontinued activities to cope with their pain. One person wrote, “I take it easy and try to stay inactive as much as possible.” Other participants found middle ground. One participant said,

I have adapted my lifestyle to build in rest times during the day—to pace my activities—to limit my activities greatly from what I would do had I not had weakness and resulting pain.

Other strategies to cope included ignoring pain, not complaining about pain, living a healthy lifestyle, using relaxation techniques, relying upon social support, and having a “mind over matter” attitude.

Discussion and Implications

Participants in this qualitative investigation wrote comments and narratives on a survey questionnaire about pain indicating that a dialogue with the researchers was desired. As experts on living with pain in the context of a chronic disabling condition, respondents added information and stories intended to improve both research on pain and pain treatment for themselves and for others with similar conditions. Since the researchers did not solicit comments, individuals wrote about what was important to them.

Perhaps the most surprising finding was that more than half (54.1%) of this large sample of individuals with amputation and SCI made comments or added narratives in the margins and white spaces of their questionnaires. This is in contrast to 24% of a sample with MS whose comments were analyzed in a similar study by Clayton et al. (1999). Such a large difference in the percentage of people who wrote comments may be related to the different focus of the two surveys (health promotion practices in Clayton et al., versus pain in this study).

Despite reported unrelenting pain, participants did not use the word “suffering” nor refer to the experience of suffering. Respondents discussed “living with pain” and “coping with pain,” but, despite negative effects on many life domains and periods of depression, coping strategies mentioned tended to be mostly “problem-focused strategies.” This contrasts with the findings of Pollock and Sands (1997), who asked people with MS and pain about adaptation to suffering. They found that emotion-focused coping strategies (managing feelings about or reactions to the problem) were most effective for achieving acceptance and finding meaning in the suffering experience. Respondents in this study reported “learning to accept” the pain. They did not describe finding meaning in the experience of pain, but instead described “not letting it interfere” and “providing motivation.” These problem-focused coping strategies (aimed at managing the problem itself) revealed an underlying resolve to control the pain rather than to understand and find meaning in it.

Two major issues elicited not only the greatest number of comments and narratives but also those with the most emotionally charged content. These issues were the prosthesis for people with amputations and inadequate treatment of pain for both groups. Commenters with amputation identified the prosthesis as a contributor, if not the sole source of pain. Participants emphasized the need to find a prosthetist willing to take the time to understand how the prosthesis will be used in the context of the individual’s lifestyle. This finding is similar to that of Buijk (1988), who interviewed people with amputation regarding prosthetic needs and found that the most important factors in patient satisfaction with a prosthesis were the skill of the prosthetist and “the degree to which prosthetists pay attention and listen.”

The use of opioid medications was another controversial issue relating to pain treatments. Our findings are consistent with those of Miller et al. (1994). These authors interviewed family physicians and their patients about their understandings of pain and found major discrepancies between the “personal” understanding of pain offered by patients and the “professional” understanding offered by physicians. They describe a mismatch between patients’ need to talk about their experiences, their everyday lives, and how to deal with pain in that context and physicians’ need to talk about medical diagnosis and drugs. Fear of addiction was mentioned most often as the reason for physician reluctance to prescribe opioid medication. The authors attributed such “opioiphobia” to physicians’ perceived need to control and to maintain an imbalance in the power differential in the patient-provider relationship.

Despite difference in the focus of the questionnaires upon which comments were written, many of our findings are similar to those of Clayton et al. (1999). Their participants with MS also wrote as if in a dialogue with the researcher. Participants in both studies used margin comments to describe the effect of their condition on life. Health care was identified as a major determinant of the quality of living with MS and also with SCI, amputations, and pain. Like the MS participants, participants in this study were “eloquent in expression of generalized frustration” with health care. Common across the two studies was the expression of a need for providers who are familiar with chronic disabling conditions and the specific ways that providers may affect the ability to carry out health-promoting behaviors or to manage pain. In addition, healthcare experiences (whether negative or positive) may directly contribute to the participants’ gaining confidence in their own expertise and their ability to offer advice to others with similar conditions.

The findings of this study have implications for researchers, healthcare providers in general, and rehabilitation nurses specifically. The vast amount of data freely offered as comments in the margins and narratives by participants is an example of an opportunity to learn more about participant perspectives that is rarely taken. The findings provided confirmation that the survey is a useful tool for data collection. It is also a reminder that, no matter how robust the amalgamated findings and statistical results from a large sample, each participant is a person with a unique story. People with chronic disabling conditions are the real experts on living with these conditions. They value research efforts and are willing to provide more than they are asked for. It is the researcher’s responsibility to value these offerings and use them to plan future studies.

Healthcare providers who treat people with physical disabilities should be aware of several issues raised by our respondents. For people in this study with amputation, the careful fitting and adjustment of prostheses is essential to prevent or decrease pain. Accurate knowledge about disabling conditions should be the basis for decisions on pain treatment for individuals with these conditions. Providers who lack condition-specific expertise do a great disservice when they assume that pain is “part of the territory.” Optimally a partnership between patient and providers, where power is shared and treatment decisions are based on a mutually negotiated plan, will defuse some of the tensions about opioid medications and “inattentive” providers.

Rehabilitation nurses working in both inpatient and outpatient settings should understand the scope and effect of pain in the lives of people with disabling conditions. Discharge planning efforts should include ensuring that there is a pain management plan in place for patients who have pain. Referrals for ongoing care should be made carefully to ensure that providers selected are comfortable with and knowledgeable in managing the disabling condition and any associated pain problems. Given that pain may develop over a long time, education provided to people with conditions in which pain is common should include anticipatory guidance about the possibility of pain and when, where, and how to seek treatment.


The authors acknowledge assistance from Mark Jensen PhD, principal investigator of the “Management of Chronic Pain in Rehabilitation Program Project,” and Lawrence Robinson MD, Dawn Ehde, PhD, Diana Cardenas, MD, and Judith Turner, PhD, investigators for the “Surveys on Chronic Pain in Amputation and Spinal Cord Injury” subprojects; as well as from Sharon Rogers, PhD, University of Texas at Tyler, for her review of the manuscript.

Source of Support: Grant 1 PO1 HD/NS33988 NIH NICHHD and NINDS.

About the Authors

Catherine A. Warms, PhD RN CRRN, is a research assistant professor of biobehavioral nursing and health systems in the department of rehabilitation medicine, University of Washington School of Medicine, Seattle, WA

Helen M. Marshall, PharmD, is a research assistant in the department of rehabilitation medicine, University of Washington School of Medicine, Seattle, WA

Amy J. Hoffman, MPH is a project director in the department of rehabilitation medicine, University of Washington School of Medicine, Seattle, WA

Erica J. Tyler, BA, is a research assistant in the department of rehabilitation medicine, University of Washington School of Medicine, Seattle, WA

Direct correspondence to Catherine A. Warms, PhD RN CRRN, research assistant professor, Biobehavioral Nursing and Health Systems, School of Nursing, Box 357266, University of Washington, Seattle, WA 98195-7266, or via e-mail at cwarms@u.washington.edu


Anson, C. A., & Shepherd, C. (1996). Incidence of secondary complications in spinal cord injury. International Journal of Rehabilitation Research, 19(1), 55–66.

Buijk, C. (1988). Use and usefulness of lower limb prostheses. International Journal of Rehabilitation Research, 11(4), 361–367.

Clayton, D. K., Rogers, S., & Stuifbergen, A. (1999). Answers to unasked questions: Writing in the margins. Research in Nursing and Health, 22(6), 512–522.

Davis, R. W. (1993). Phantom sensation, phantom pain, and stump pain. Archives of Physical Medicine and Rehabilitation, 74(1), 79–91.

Dudgeon, B., Gerrard, B., Jensen, M., Rhodes, L., & Tyler, E. (2002). Physical disability and the experience of chronic pain. Archives of Physical Medicine and Rehabilitation, 83(2), 229–235.

Ehde, D. M., Czerniecki, J. M., Smith, D. G., Campbell, K. M., Edwards, W. T., Jensen, M. P., & Robinson, L. R. (2000). Chronic phantom sensations, phantom pain, residual limb pain, and other regional pain after lower limb amputation. Archives of Physical Medicine and Rehabilitation, 81(8), 1039–1044.

Ehde, D. M., Smith, D. G., Czerniecki, J. M., Campbell, K. M., Malchow, D. M., & Robinson, L. R. (2001). Back pain as a secondary disability in persons with lower limb amputations. Archives of Physical Medicine and Rehabilitation, 82(6), 731–734.

Johnson, R. L., Gerhart, K. A., McCray, J., Menconi, J. C., & Whiteneck, G. G. (1998). Secondary conditions following spinal cord injury in a population–based sample. Spinal Cord, 36(1), 45–50.

Miller, W. L., Yanoshik, M. K., Crabtree, B. F., & Reymond, W. K. (1994). Patients, family physicians, and pain: Visions from interview narratives. Family Medicine, 26(3), 179–184.

Morse, J., & Field, P. (1995). Qualitative research methods for health professionals. (2nd ed.). Thousand Oaks, CA: Sage Publications.

Pollock, S. E., & Sands, D. (1997). Adaptation to suffering. Meaning and implications for nursing. Clinical Nursing Research, 6(2), 171–185.

Smith, D. G., Ehde, D. M., Legro, M. W., Reiber, G. E., del Aguila, M., & Boone, D. A. (1999). Phantom limb, residual limb, and back pain after lower extremity amputations. Clinical Orthopaedics (361), 29–38.

Turner, J., Cardenas, D., Warms, C., & McClellan, C. (2001). Chronic pain associated with spinal cord injuries: A community survey. Archives of Physical Medicine and Rehabilitation, 82, 501–508.

Turner, J. A., & Cardenas, D. D. (1999). Chronic pain problems in individuals with spinal cord injuries. Seminars in Clinical Neuropsychiatry, 4(3), 186–194.

Von, K.-M., Ormel, J., Keefe, F. J., & Dworkin, S. F. (1992). Grading the severity of chronic pain. Pain, 50(2), 133–149.