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Welcome to our page on research opportunities.  We would love for you to participate and help us with research on pain and cystic Fibrosis.  

    CLICK HERE TO TAKE PART IN OUR PAIN SURVEY

Below we have provided abstracts for you to read.  We will also use this page to let you know what research opportunities are available.

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A Survey of Pain Experienced by Cystic Fibrosis Patients and Their Parents

Broome, M., Subramaniam, P.   University of Alabama at Birmingham School of Nursing.  Pediatric Pulmonology, Suppl 22:324, 2001

Abstract:  Cystic Fibrosis (CF) is a chronic illness in which patients can be expected to suffer pain, both acute and chronic.  Yet there are no studies that describe the pain experienced by CF patients.  The primary purpose of this survey was to explore the prevalence and character of pain in children and young adults with CF.  This study employed a cross sectional descriptive survey design.  One hundred and six survey questionnaires were sent out to the patients and their parents and thirty-one were returned (29%).  The sample consisted of thirty-one CF patients between ten and thirty-five years of age and 26 parents.  Subjects were recruited by means of announcements in 1) Web sites at the University of Alabama at Birmingham CF Center, The International Association of Cystic Fibrosis Adults web page and cysticfibrosis.com; 2) Two newsletters for CF patients one each from Alabama and Georgia; 3) Patients and parents at the CF clinic and inpatient unit at the Children's Hospital of Alabama, Birmingham.  Patients and their parents each were required to fill out a 35-item questionnaire independently.  Eighty-eight percent of the patients reported pain.  Of these 48% and 13% reported they experienced moderate and severe pain respectively.  More than half of the patients (62%) and parents (66.7%) reported one to five episodes of pain every month.  Both the CF patients and their parents reported the abdomen as being the most common site of pain (41%).  Sixty percent of patients and 50% of parents reported pain that hinders day-to-day activities with 88% missing between 1-5 days of school every month as a result of pain.  Ninety-one percent of the patients and 58% of parents discussed pain issues with their HCPs.  However, most reported they were never referred for pain management and believed that their HCP only listened when they reported pain.  Tylenol (66.7% patients, 69.6% parents) and relaxation (4.7% patients, 45.5% parents) were the most commonly employed modalities for pain relief by the patients.  This study establishes acute and chronic pain syndromes in cystic fibrosis, and point to the need for interventional trials to manage the pain in the disease.

 

A Survey of Pain Practices of Health Care Providers for Cystic Fibrosis Patients

Broome, M., Subramaniam, P.  University of Alabama at Birmingham School of Nursing, 2001

Abstract:  Pain management in Cystic Fibrosis has not been evaluated systematically in the past.  Understanding pain management practices can serve as a first step towards therapeutic interventions that control or eliminate debilitating painful symptomatology.  There are no studies that describe the pain perception and practices of Health Care Providers (HCPs) for CF patients.  The purpose of this survey was to explore pain perception and treatment practices of HCPs for children and adolescents with CF and the pharmacological and non-pharmacological interventions used for the pain.  The sample consisted of HCPs recruited from a listing of Comprehensive CF Centers obtained from the CF Foundation website.  The HCP survey consisted of twenty-one items.  The items were based on an earlier survey of pediatric pain practices (Broome, 1998).  Of the seventy-nine HCP surveys sent out twenty-seven were returned (34%).  Fifty-nine percent of the HCPs were physicians and 31% were registered nurses.  Fifty percent of the health care providers were working in Comprehensive CF centers, 37% in academic centers, and 11% in community clinics.  Forty-eight percent and 44% of the HCPs were practicing with CF patients for 5-15 years and more than 15 years respectively.  Forty-eight percent of the HCPs reported that their patients with CF experienced episodes of disease related pain with the majority of these occurring in late adolescence (16-20 years) while 81% reported that pain in patients 21 years and above.  Eighty-nine percent of the HCPs rated their patients' pain to be moderate.  Fifty-six percent of HCPs reported 1-5 episodes of pain every month for their patients.  The most common site of pain was the chest (96%).  HCPs reported prescribing non-opioids, heat and positioning most commonly.  HCPs were asked what barriers they believed prevented adequate pain management.  Lack of resources and knowledge were identified as obstacles to adequate pain management.  This study provides a rational basis from which pain management in Cystic Fibrosis can be more fully explored.

 

Chronic Pain in Cystic Fibrosis

Sophie Ravilly, MD; Walter Robinson, MD, MPH; Santhanam Suresh, MD; Mary Ellen Wohl, MD; and Charles B. Berde, MD, PhD Pediatrics, 98: 741-747, 1996

ABSTRACT: Purpose: The purpose of this study was to observe the frequency of chronic pain in a group of older patients with cystic fibrosis (CF) and the treatment they received for their pain.
Sample: Two sets of patients who were followed at the CF Center at Children's Hospital (Boston) were examined. The first set was comprised of all patients over the age of five years who died between 1984 and 1993; the second was a group of 23 other CF patients who had been referred to the Pain Treatment Service.
Design: Data about the etiologies of pain occurrences and medical treatments administered were extracted from the medical chart for each patient.
Findings: The prevalence of chronic pain in this population increased dramatically in the last 6 months of life. Headaches (55%) and chest pain (65%) were often reported; back pain (19%), abdominal pain (19%), and limb pain (16%) were also reported. In patients with headache, the main causes were hypercarbia or hypoxia, migraine, and sinusitis. The majority of chest pain was musculoskeletal, with pleuritis, pneumothorax, and rib fractures also reported as the cause of chest pain.
Medical Treatment: A variety of nonpharmacological and pharmacological treatments were documented. Forty-one patients (53%) had pain severe enough to ask for opioid treatment, and ten patients (13%) received opioids for more than three months. In eight patients with more severe pain, regional analgesia was found to be particularly effective.
Conclusions: Chronic pain is a frequent problem in CF, particularly as the patient ages. When administered with caution, opioids have proven to be effective and safe in this population; regional analgesia can be used to preserve pulmonary toilet while adequately treating severe pain.

 

Pain in CF Patients:  A Contractual Approach

M. Robbins, D. Chastain, N. Eksterowicz, D. Wilmoth, University of Virginia Medical Center, Charlottesville, VA, USA  Pediatric Pulmonology, Suppl 18:443, 1997

Although the phenomenon is poorly reported in the literature, many processes may result in pain in CF patients.  In the absence of specific markers, pain may be ignored by the health care team.  Scarring caused by recurrent infections, treatment for previous pneumothorax, or surgery can result in chest pain.  Abdominal pain can occur as the result of biliary problems, bloating, ileus, and constipation and may be compounded by the incorrect use of pancreatic enzymes.  Arthropathy, as well as fractures due to low bone density, cause joint pain.  Headache can be caused by hypoxemia, hypercapnia, or sinus infection.  Unreported and undertreated pain can affect CF patients in many ways.  Noncompliance with treatment regimens is perhaps the most obvious.  Undertreatment of pain may lead to what is perceived as "drug seeking" behavior, resulting in the labeling of patients as narcotic abusers by health care providers unfamiliar with pain management.  Unfamiliarity with drug dosages and conversions may lead to undertreatment.  Narcotics may be misused as substitutes for other treatment modalities, for example in the treatment of anxiety.  The individual experience of pain is influenced by pshychological and social factors.  As CF patients make their transition to adulthood, the issues of unaccustomed independence as well as issues of mortality may influence perceptions of pain.  Many have not achieved age-appropriate communication or coping skills.  They may feel "out of control".  Some feel victimized and entitled to receive whatever care they demand.  Situational depression may compound pain.  We utilize a multidisciplinary approach to manage the manifestations of pain in our patients.  Our team consists of the medical director, nurses, and a psychologist and nurse from our institution's Acute Pain Service.  Our approach has been to develop patient care contracts.  These contracts contain 1) common goals, 2) expected patient behaviors, 3) care plans for both the inpatient and outpatient setting, and 4) consequences for noncompliance with terms of the contract.  The patient participates in the development of the contract; after signing by all parties, one copy is given to the patient and one copy is kept in the hospital chart.  The benefits that we have observed as the result of contracting include 1) reduction in narcotic dosage, 2) replacement with more appropriate medication or treatment modalities, and 3) more active participation and increased compliance of patients with all aspects of their treatment plan.  The challenges that remain are education of physicians and nurses to pain syndromes and treatment in CF patients and the development of appropriate consequences for patients who break the terms of their contracts.

Recurrent Acute Pancreatitis in Patients with Cystic Fibrosis With Normal Pancreatic Enzymes

H. Shwachman, MD, E. Lebenthal, MD, and K.T. Khaw, MD. Pediatrics, 55:86, 1975

From the Division of Clinical Nutrition, Department of Medicine, Children's Hospital Medical Center, and the Department of Pediatrics, Harvard Medical School, Boston.

ABSTRACT: Purpose: The purpose of this study was to examine ten patients with cystic fibrosis (CF) who had normal pancreatic enzymes and presented with recurrent acute pancreatitis.
Sample: Ten adolescent and young adults with cystic fibrosis who had well-documented recurrent attacks of acute pancreatitis.
Findings: Two patients were diagnosed with acute pancreatitis before the diagnosis of CF was made. This suggests that acute pancreatitis may be the presenting complaint in the young adult with CF. The diagnosis of acute pancreatitis was supported by the presence of severe abdominal pain (usually with vomiting), tenderness in the mid-epigastrum, elevated serum and urinary amylase and serum lipase. Pain was precipitated by fatty meals, alcohol ingestion, and post cholecystectomy and tetracycline adminstration. In some patients there was no event of precipitation. Intravenous secretin-pancreozymin stimulation tests revealed a diminished bicarbonate secretion with little effect on the secretion of the pancreomyzin stimulation. The endocrine pancreatic function tested in four patients was normal as revealed by the glucose tolerance tests and determinations of serum insulin, growth hormone, and free fatty acid. Transduodenal pancreatograms were performed in three patients; one showed a normal pancreatic duct, one showed obstruction, and in the third patient, a beady type of narrowing was found. The selenomethionine Se 75 uptake of the pancreas was noted only in the head of the pancreas. This suggests that loss of function occurs initially to a greater extent in the tail and body of the pancreas.