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Addressing the Pain: Dressings and Clinician Support in Relieving Pain and Promoting Healing
Pain is a more terrible lord of mankind than even death itself. — Dr. Albert Schweitzer
When families face the overwhelming challenges of a child’s disease, they rely heavily on medical professionals, trusting them to help alleviate clinical, emotional, and financial burdens. Clinicians must be committed to providing not only care but also their expertise to work the system — sometimes by addressing clinical problems like appropriate dressing changes and sometimes by addressing reimbursement.
The following case study presents a 19-year-old patient with keratitis-ichthyosis-deafness (KID) syndrome, a rare disorder that causes skin lesions. The discussion includes information on the pathophysiology, manifestations, and management of the syndrome, as well as actions taken by his caregivers to ensure the patient and his family continue to enjoy the improved quality of life a particular type of dressing afforded them.
Keratitis-ichthyosis-deafness syndrome is caused by a novel connexon 26-gene mutation identified with congenital deafness, palmoplantar keratoderma, ichthyosiform scaling, follicular hyperkeratosis, and mild keratitis. The mutation of connexon 26, found on chromosome 13, disturbs specialized channels called gap junctions, causing loss of homeostasis of tissue growth and development and loss of normal cellular response to external stimuli. As is the case with many disease syndromes, numerous factors affect a variety of elements of the disease process; hence, the exact mechanism for the drainage, sinus formation, and extensive inflammatory response found in this and many other patients continues to require investigation.1
Case Study
Disease manifestation. For 19-year-old Mr. C, the most prominent manifestation of the disease from birth to 5 years of age was frequent skin rashes. At 21/2 years, he was diagnosed with high-frequency deafness but was not able to wear his hearing aides because of the intermittent abscesses that developed over his scalp and face. He also developed abscesses on his chest, back, axillae, and groin. The first major lesion erupted when he was 5 years old. The lesions were treated with antibiotics, debridement, and skin grafting but the reason for the skin abscesses remained a mystery. The disease finally was diagnosed after extensive testing by the National Institutes of Health (NIH) when Mr. C was 16 years old; NIH continues to follow his progress.
The onset of puberty accelerated the disease process, resulting in ongoing, draining, painful lesions on his face, scalp, neck, chest, axillae, and inguinal, intergluteal, and perianal areas (see Figures 1, 2, 3, 4, 5). Mr. C has undergone numerous debridement and graft surgeries; he has spent many months in the hospital and recovering at home. Various dressing change regimens have been part of his life since the age of five.
Pain. Pain is a significant challenge. Mr. C’s skin is subjected to an aggressive inflammatory response due to extensive inflammatory cystic acne. This process, along with the abnormal cellular response to external stimuli, makes pain control a major issue. Mr. C has taken methadone every 8 hours; hydromorphone hydrochloride (Dilaudid, Knoll Laboratories, Mount Olive, NJ) every 3 to 4 hours; and transmucosal fentanyl citrate (Actiq, Abbott Laboratories, Inc., North Chicago, Ill.) four to five times daily. Any type of shear or friction on the skin increases the pain sensation. For most of his life, Mr. C’s typical dressing consisted of gauze pads and wraps, which caused several adverse events. The drainage from the abscesses accumulated and attached to the periwound surface, requiring painful surgical debridement. The rupture of the cyst structure spilled keratin and glandular secretions into the subcutaneous tissue, increasing the inflammation and pain.1
A Different Approach
To address these issues, a cleansing and dressing routine employing Safetac® soft silicone was established. Mepilex (Mölnlycke Health Care, Newtown, Pa.) is a soft silicone foam dressing that absorbs exudate while protecting the periwound skin. Eliminating drainage on the skin reduced the inflammation process and scab formation. Removal of gauze dressings had been a significant cause of pain but the soft silicone foam dressings lifted easily and painlessly. Frequent surgical debridement was replaced by cleansing with pH-balanced cleansers, using a fine pore sponge, and then applying the soft silicone dressing. These changes keep Mr. C’s wounds from drying out and crusting.2,3
Mr. C’s dressings customarily were changed daily after showering. This process (using gauze and pads) took up a major part of every morning. According to Ovington,2 a gauze dressing placed in the wound does little to impede fluid evaporation and allows a loss of tissue temperature, impairing healing. The soft silicone foam dressing allowed sensitive areas in the intergluteal, inguinal, and perianal areas to be dressed easily. In addition, the soft silicone foam dressings can be cut to fit into small spaces and were soft and moldable (see Figure 6). Time needed for the dressing change was reduced by approximately 70%, including the cleansing process.
Further investigation revealed that some areas of breakdown in the groin and hip areas were not resolving secondary to excess friction and shear caused by the mesh dressing holders used in place of tape. To address this concern, Mepitac (Mölnlycke Health Care, Newtown, Pa.) soft silicone tape was applied over the hips to secure the dressings. In addition, different undergarments were suggested to keep the dressings in place and reduce the use of mesh dressing holders. Mr. C elected to alternate between silk long underwear and elastic biker shorts to decrease the friction. Within 10 days, the non-healing ulcers were resolved, eliminating the shear effect of the elastic pants Mr. C’s formerly used to help keep the dressings in place.
Cost of Care
The introduction of soft silicone dressings as an adjunct to care not only enhanced Mr. C’s quality of life but also provided greater wound healing and precluded further surgical debridement. The number of dressing changes and need for narcotics were reduced. Because wound care has become less time-consuming, Mr. C can pursue his dream of earning a college degree and becoming independent.
To help Mr. C receive reimbursement for the dressings, two clinicians from the National Institutes of Health (Victoria L. Anderson, MSN, CRNP, Nurse Practitioner, Director of Clinical Services, Laboratory of Clinical Infectious Diseases; and Steven M. Holland, MD, Chief of Laboratory of Clinical Infectious Diseases, National Institutes of Allergy and Infectious Diseases) took it upon themselves to draft a letter on Mr. C’s behalf to the case manager for Medicaid in Mr. C’s state. The letter described KID syndrome and contended that soft silicone adhesive technology provided the best way to manage his condition. The letter states: “We believe these special dressings are critical to [Mr. C’s] care and have been instrumental in his recovery. We request that you authorize the use of these dressings for [Mr. C]. This will markedly reduce the total cost of care for his disease as well as immeasurably improve his quality of life.” As a result, one area of stress (reimbursement) was resolved for his family.
Discussion
Mr. C and his family spent a decade trying to find a diagnosis. The disease now has a name but the day-to-day problems persist, not the least of which is avoiding or reducing pain. Sometimes little can be done about the disease etiology but addressing the pain must be a priority. The most appropriate time to address pain is at the beginning of the care cycle. Clinicians should look beyond the obvious to more subtle causes of pain. Are there areas of friction or shear? Are dressings absorbent and easy to remove? Is the periwound skin protected? Is pressure relief provided? Are the patient and family fully informed regarding the treatment plan? Have additional concerns that cause anxiety and fear been considered?4,5
Patients and families dealing with chronic disease will likely cope with enormous stress so the least caregivers should do is offer practical solutions that address issues of dignity and pain. With Mr. C, a few adjustments in his wound dressing routine and clothes selection positively affected his self-esteem.
Conclusion
When a patient is faced with an incurable but treatable condition like KID syndrome, providing symptomatic relief (eg, trying a new dressing or more comfortable clothing) often is the best way to improve quality of life. Compassionate clinicians who recognized the importance of symptom relief in terms of quality of life provided the hope needed for this patient to endure his condition.
Addressing the Pain is made possible through the support of Mölnlycke Health Care, Newtown, PA.
1. Montgomery JR, White WW, Martin BI, Turner MI, Holland SM. A novel connexon 26 gene mutation associated with features of the keratitis-ichthyosis-deafness syndrome and the follicular occlusion triad. J Am Acad Dermatol. 2004;51:377–382.
2. Ovington LG. Handing wet-to-dry out to dry. Home Healthcare Nurse. 2001;19(8):447–483.
3. Harding KG, Bale S. Wound care: putting theory into practice in the United Kingdom. In: Krasner D, Kane D, eds. Chronic Wound Care: A Clinical Source Book for Health Care Professionals. 3rd ed. Wayne, Pa.: Health Management Publications;2001:115-–123.
4. Nemeth AJ, Eaglstein WH, Taylor JR, Peerson LJ, Falanga V. Faster healing and less pain in skin biopsy sites treated with an occlusive dressing. Arch Dermatol. 1991;11(127):1679–1683.
5. Krause JS. Skin sores after spinal cord injury: relationship to life adjustment. Spinal Cord. 1998;36:51–56.
