Sickle Cell Information Center Guidelines

Edited by James Eckman, M.D. and Allan Platt, PA-C

Nonpharmacological Management of Pain by Marietta H. Collins, Ph.D. and Nadine J. Kaslow, Ph.D.

In the past decade, behavioral scientists have made major contributions to the assessment and nonpharmacological treatment of acute and chronic pain associated with sickle cell syndromes. Acute pain is defined as intense pain of recent onset that usually diminishes and disappears when healing has taken place. Acute pain serves an adaptive biological function, directing attention to an injury or disease condition, prompting an immediate response to encourage avoidance or escape from harmful stimuli. Chronic pain refers to pain of long duration, typically three months or greater. In chronic pain, the pain itself can be viewed as the disease, because it no longer has a biological function.

Given children's various cognitive-developmental stages, their conceptualizations of pain and discomfort may be different from those articulated by adults. Chronic pain, especially in children, typically is characterized by the absence of an anxious component and the presence of reactive features (e.g.,compensatory posturing, lack of developmentally appropriate behaviors, depressed mood, inactivity or restriction of normal activities of daily living). These chronic pain behaviors eventually may be maintained independently of the original nociceptive impulses and tissue damage, and reinforced by socioenvironmental influences.

A comprehensive, multidisciplinary approach that addresses biomedical, psychological, social and environmental factors is the most efficacious form of treatment for sickle cell syndrome pain. In addition to appropriate analgesic medications, this approach combines biofeedback, self-hypnosis, relaxation therapy, and cognitive-behavioral interventions for managing the pain associated with vaso-occlusive episodes.

Accurate assessment is essential for the effective management of pain in children and adults. For adult pain patients, Melzack's McGill Pain Questionnaire (MPQ) is the most widely used and respected assessment instrument. The Varni/Thompson Pediatric Pain Questionnaire (PPQ), modeled after the MPQ, is recommended for use with children. Such pain assessment instruments measure acute, recurrent, and chronic pain, address the intensity of pain on a visual analogue scale, and ascertain the sensory, affective, and evaluative qualities of pain perception.

Assessments of pain should be conducted within the context of a diagnostic interview. A comprehensive family history addresses both the patient's and the family's pain history, with questions pertaining to symptomatology, past and present treatments for pain, and socioenvironmental situations that may influence pain perception.

Any report of pain associated with sickle cell syndromes requires a thorough medical work-up. Please see appropriate medical chapters on pain for specifics related to physical examination and laboratory findings.

Any report of pain associated with sickle cell syndromes requires a thorough medical work-up. Please see appropriate medical chapters on pain for specifics related to physical examination and laboratory findings.

The primary cognitive-biobehavioral techniques used for managing pain associated with sickle cell syndromes are: (a) pain perception regulation - treatment modalities that utilize self-regulatory techniques such as biofeedback and progressive muscle relaxation, meditation, guided imagery, self-hypnosis; (See Collins, 1998) and (b) pain behavior regulation - treatment that identifies and modifies socioenvironmental factors that influence pain expression and rehabilitation (See Varni, 1983).

Biofeedback and progressive muscle relaxation training. Biofeedback has been used to assist in managing acute vaso-occlusive episodes in sickle cell syndrome patients. Biofeedback, in which the nonobservable electrical activity of the body is amplified and translated into observable auditory or visual signals, can be used to teach individuals about the association between their emotions and internal physiological changes. Biofeedback generally is used in conjunction with hypnosis, relaxation training, or cognitive strategies such as attention diversion, adaptive self-statements and thought stopping, and imagery.

Hypnosis typically includes a hypnotic induction procedure (often involving relaxation exercises, deep breathing and imagery)followed by hypnotic suggestions regarding pain reduction. Progressive muscle relaxation, in which individuals are taught to tighten and relax various muscles and muscle groups, facilitates physical and mental relaxation and thus minimizes pain increases resulting from physiological changes correlating with tension and anxiety. Attention diversion and distraction techniques (e.g. music, television or video games, describing a favorite or novel object, deep breathing, massage) actively alter the individual's perception of pain and the more absorbed the individual becomes in the distraction activity, the more his or her pain will be reduced. Thought stopping is a process in which individuals who anticipate pain related to either medical procedures or the sickle cell disease, learn to substitute positive or more adaptive thoughts for negative ones. Imagery, the process in which an individual concentrates on the image and recalls a positive experience, serves both as a distraction technique and as a specific method for producing physiological changes that relax the body.

Self-hypnosis. Self-hypnosis is effective in reducing pain for individuals experiencing pain secondary to medical problems. Hypnosis frequently is used in conjunction with biofeedback for sickle cell individuals. In a controlled, random assignment, study, the efficacy of self-hypnotic pain management was compared to a control condition for adults with SCD.

Contingency Management. The premise underlying contingency management of pain is based upon the theory that individuals are reinforced by significant others for behaviors associated with pain. Reinforcement for such behaviors occurs when receiving increased attention is contingent upon an individual's need for comfort and pain relief. A careful assessment of factors that are believed to be reinforcing pain behaviors is essential prior to beginning a contingency management program. Such factors may include diminished responsibilities at home, work, and school for pain behaviors and increased emotional nurturance from family members and medical staff. Once identified, a contingency management program would eliminate systematically those factors that appear to reinforce or reward the individual for his or her pain behaviors.

Behavioral contracting. Behavioral contracting for sickle cell patients has been advocated, with the goal being decreased reliance on both the medical system and analgesic medications. Contracts, written agreements between the treatment providers and the patient, articulate the responsibilities of the patient, family, and health care professionals. The responsibilities and commitments of these contracts are agreed upon mutually and must be followed by all parties involved. These contracts are designed to increase the patient's active involvement in the treatment plan, and can serve to enhance treatment. Behavioral contracts particularly are helpful in reducing reliance on medical interventions (including hospitalization) and increasing compliance in adolescents and adults who experience frequent vaso-occlusive episodes.

Additionally, the use of home diaries has been. Home diaries enable the patient and members of his or her support system to document the intensity and frequency of the pain symptoms. This information is useful for care providers and pain diaries enable the patient to be involved actively in treatment, underscoring the patient's responsibility to communicate distress accurately, and reduce the patient's need to draw negative attention to him or her self.

Family interventions

In individuals with frequent vaso-occlusive episodes, a chronic pain syndrome may develop. Chronic pain syndromes often are accompanied by dysfunctional family interaction patterns. Family therapy may be indicated. Family intervention should include educational components, support, and ways to minimize the secondary gains. A psychoeducational manualized treatment intervention approach in working with youth with SCD and their families (See Collins, et al., 1997 and Kaslow et al., 1997).

Patient and Parent Education

Education is an essential component of a pain management plan and there is substantial evidence in the literature supporting its benefits. With sickle cell syndromes, adults and children, who are informed, are less anxious and better psychologically adapted than their less-informed counterparts. Comprehension of disease knowledge also may enhance illness controllability, which in turn facilitates better adjustment and may improve treatment compliance. (

Education groups are recommended for patients and their families, and some clinicians have advocated for parent education groups. Whether the education is provided in an individual, family, or group format, it has been recommended that the information be imparted in a developmentally and culturally sensitive manner. Specifically, the information should be shared in a manner that takes into account the level of cognitive and affective development of all family members. Additionally, it is essential that the material be presented in a fashion consistent with the family's socioeconomic status and racial, religious, and ethnic background..

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Copyright © 1997 Sickle Cell Information Center
Last modified: October 08, 2000