Attitudes Toward Percutaneous Endoscopic Gastrostomy Placement in Cystic Fibrosis Patients

Abstract

Malnutrition is a common complication of cystic fibrosis (CF). According to the 2003 Cystic Fibrosis Foundation Patient Registry, 25% of patients younger than 18 years of age fall below the tenth percentile for weight and 28% fall below the tenth percentile for height. For patients age 18 and above, 29% fall below the tenth percentile for weight and 22% fall below the tenth percentile for height (1). Improved nutritional status is positively correlated with increased longevity, pulmonary status, weight, height and age-appropriate onset of puberty (2-5). The estimated energy needs of people with CF are approximately 120% to 150% of the Dietary Reference Intake (6). For patients to meet estimated energy needs, the following three methods for increasing calories are implemented: high calorie, high protein diet, supplemental nutrition drinks and temporary nasogastric tube feedings. Despite these methods, many patients do not meet the requirements through daily dietary intake. In a 3-year longitudinal, prospective study of dietary intake, children with CF consumed more energy than control children (P = 0.025) but did not meet the CF recommendation of 120% of the Dietary Reference Intake (7). If energy needs are not met with standard efforts at supplementation, feedings via gastrostomy may be initiated. Long-term gastrostomy feedings are a safe and effective means of improving nutrition status of malnourished patients with CF (8). Percent of weight per height improved significantly from 74.5% ± 7.7% before gastrostomy placement to 88.0% ± 7.0% (P < 0.005) 1 year after gastrostomy in eight subjects at The Hospital for Sick Children, Toronto, Canada who received nocturnal elemental feedings via percutaneously placed gastrostomy (PEG) tube (9). The Cystic Fibrosis Foundation Consensus Committee recommends aggressive nutritional therapy including PEG when weight falls below 90% of expected weight for height or ideal body weight. According to the 1998 Cystic Fibrosis Foundation Patient Registry for Centers in Utah, Arizona, Colorado and New Mexico, 9% of the patients had a gastrostomy at the time of the study. The registry also reported that 14% of children and 21% of adults fell below 85% for ideal body weight. The 1998 Patient Registry reported that 5% to 13% of patients with CF met the criteria for nutritional supplementation and were receiving inadequate nutritional treatment (10). Despite the nutritional benefits of PEG placement, many patients and families chose not to pursue this means to nutritional therapy or were unaware of its benefits. The purpose of this study was to define the attitudes toward PEG placement in three groups: CF patients with a PEG, CF patients without a PEG and professionals working with CF patients on PEG placement. METHODS Subjects The sample for this study was selected from the accredited CF centers identified in Table 1. Only professionals from New Mexico participated in the study because of lack of institutional review board approval for patients and parents. All individuals with CF over 10 years old and parents of children with CF aged 0 to 18 years old who attended these accredited CF centers were invited to participate. The 10-year age cutoff was based on the reading level of the questionnaire as recommended by Primary Children's Medical Center's Institutional Review Board. A subgroup was formed to compare the responses of children ages 10 to 18 years with their parents. Professionals working with the CF population in Tucson, Arizona, Denver, Colorado, Albuquerque, New Mexico and Salt Lake City, Utah were also invited to participate in completing a questionnaire regarding PEG placement. The institutional review boards from each of the participating centers approved the study.TABLE 1: Demographics of Participating Cystic Fibrosis CentersQuestionnaires Researchers at the Intermountain CF Center presented a basic set of questions to a couple of patients with a PEG during a hospitalization for pulmonary therapy. Data gathered from these interviews and consultation with a gastroenterologist and pulmonologists were used to develop 19 questions with answers amenable to a Likert scale. The preliminary questionnaire was mailed to 25 patients with PEGs who attended the Intermountain CF Center. Twelve patients responded to the questionnaire by completing it in clinic or via mail. Information from this focus group was used to develop a core questionnaire adapted for the following five target groups: 1) CF patients older than 10 years of age with a PEG, 2) parents of CF children 0 to 18 years with a PEG, 3) patients with CF more than 10 years old without a PEG, 4) parents of CF children 0 to 18 years without a PEG and 5) professionals working with CF patients. The questionnaires for the children and parents differed only in using the first or second person in questions. Physicians, nurses, social workers and dietitians associated with CF patients received a form to critique the questionnaires for content and understanding. Readability was felt to be at a grade level of 3.4 using the Flesch-Kincaid Grade Level score in Microsoft Word (11). Alpha reliability analysis established internal consistency of the questionnaire with an alpha coefficient of 0.77. The questionnaire for CF patients consisted of two sections. The first section of the questionnaire asked for patient responses on age, weight, height, number of days hospitalized in the last year, health in the last year (1 = very poor; 2 = poor; 3 = okay; 4 = good; 5 = very good) and activity level in the past year (1 = much less active; 2 = less active; 3 = about the same; 4 = more active; 5 = much more active). The second section consisted of a series of statements about PEGs, each followed by a five-category Likert scale (1 = strongly agree, 2 = agree, 3 = no opinion, 4 = disagree, 5 = strongly disagree). The questionnaire for patients and parents of patients without PEGs consisted of 18 statements concerning weight gain challenges, cosmetics of PEG placement, payment for formula and knowledge of the pros and cons of PEG placement. For patients with PEGs and their parents, the questionnaire contained 15 statements that addressed weight gain, aesthetic aspects, payment for formula and whether the person would choose to have a PEG if given the choice again. The questionnaire for professionals identified the discipline of the respondent. It consisted of 14 statements with the first two defining poor lung function and criteria for PEG placement based on percentage of ideal body weight. The remaining 12 statements were similar to those in the PEG and non-PEG questionnaires, addressing cosmetic aspects of PEGs, payment for formula, perceived benefits for weight gain and overall health. Distribution of Questionnaires A cover letter described the purpose of the study, invited the patients or parents to participate and assured confidentiality. The packet for the non-PEG patients and parents included a description and an illustration of a gastrostomy. Each center was responsible for identifying patients with PEGs and sending the age-appropriate packet. Non-PEG or PEG questionnaire packets were mailed to all patients or their parents attending the CF centers, with the exception of Tucson, Arizona, where the non-PEG questionnaire was completed during a routine clinic visit. The PEG questionnaires for Tucson participants followed the multicenter protocol and were mailed to all patients or parents. For children aged between 10 and 18 years, parents and children were sent separate questionnaires linked by an identification number to facilitate comparison of parent and patient attitudes toward PEG placement. A reminder was sent to PEG parents and patients 3 months after the initial mailing. Participants anonymously completed and returned the questionnaire to Primary Children's Medical Center in a prepaid, self-addressed envelope. Statistical Analysis All data were collected and entered into Statistical Package for the Social Sciences Graduate Pack 11.0, 2001 (SPSS/PC; SPSS Inc., Chicago, IL) for statistical analysis. Descriptive statistics were used to report age, gender, days hospitalized in past year, overall health and activity in the past year and responses to the statements about PEG placement. Kruskal-Wallis one-way analysis of variance by ranks statistical analysis was conducted to determine differences among the attitudes of health care professionals, patients with PEGs and patients without PEGs. Paired Student t-tests were used to identify differences between the responses of parents and their children. RESULTS Subjects Demographics for the respondents to the non-PEG questionnaire were similar to National Cystic Fibrosis Patient Registry. Fifty-three percent of children registered with the CF Foundation were male and 51% (104 of 203) of the non-PEG questionnaire respondents were male (1). The national mean age of CF patients in the CF registry was 16.4 years, and the mean age for the non-PEG questionnaire respondents was 16 years (1). The PEG questionnaire respondents differed significantly in gender; 72% (26 of 36) were female. The PEG questionnaire respondents were significantly younger than the non-PEG patients, with a mean age of 12.59 years. The mean body mass index was also significantly lower in the PEG questionnaire respondents (non-PEG body mass index = 19.21 versus PEG body mass index = 17.38). PEG Questionnaires The return rate for PEG questionnaires is shown in Table 1. The 51 completed questionnaires represented 36 individual patients because 15 had dual representation in which both parent and child completed separate questionnaires for the same individual. Table 2 provides descriptive statistics on the PEG questionnaire responses. Ninety-three percent (27 of 29) of parents and 96% (21 of 22) of patients reported that weight was a problem at the time of PEG placement. After PEG placement, 91% of patients reported weight gain, 73% of patients said the PEG had helped them grow, 59% of patients reported more energy and 77% reported they were healthier after PEG placement. Parent responses did not differ significantly from patient responses. When asked whether they would have a PEG placed if they made the decision again, 64% of the patients and 79% (23 of 29) of parents responded positively.TABLE 2: Descriptive Statistics of PEG and Non-PEG QuestionnairesAccording to a paired Student t-test, responses of children aged 10 to 18 years differed significantly from the responses of their parents in rating overall health in the past year (P = 0.04), status of lungs before PEG placement (P = 0.04) and assessment of PEG appearance (P = 0.02). Children perceived their health as better than it was assessed by their parents. Children also said their lungs were not as healthy before PEG placement. In response to the statement that a PEG looks “bad,” the children had no opinion whereas the parents did not feel that the PEG looked bad. No other significant differences were found between parents and children. Non-PEG Questionnaires The return rate of non-PEG questionnaires is shown in Table 1. The 248 completed questionnaires (Arizona not included owing to the different distribution method) represented 203 subjects, with 45 having dual representation in which parent and child completed separate questionnaires for the same individual. Only 10% (20 of 201) of the non-PEG patients reported that a member of the CF health care team had recommended PEG placement. Fifty-five percent (111 of 202) of non-PEG responders either disagreed or strongly disagreed that their weight was a problem. Sixty-four percent (129 of 202) either disagreed or strongly disagreed that they did not want to gain weight and 68% thought they ate enough. A lack of knowledge concerning PEG tubes was expressed by 61% (123 of 202) of the patients, with 20% (41 of 202) having no opinion as to whether they knew enough about the pros and cons of PEG. According to a paired Student t-test, the responses of children ages 10 to 18 years differed significantly from their parents on the following questions: “Would a PEG limit participation in sports and other activities?” (P = 0.000), “would a PEG be painful?” (P = 0.02), “should a child have a PEG placed if he or she were losing weight?” (P = 0.012) and “would a nasogastric tube be preferable to a PEG tube if nutrition support was indicated?” (P = 0.044). The children were more likely than their parents to feel that a PEG would be painful and that it would be hard to participate in sports or other activities. If their child was losing weight, parents were more apt to consider PEG placement. If nutritional support was indicated, however, parents preferred a nasogastric tube to PEG. Professional Questionnaires Table 3 describes the demographics of the professionals and how they defined weight and lung problems.TABLE 3: Professional Demographics and Definitions of Weight and ProblemsComparison of PEG, Non-PEG, and Professional Questionnaires There was an insufficient number of parent and child questionnaires to allow separate consideration of these groups. Each patient was represented by one questionnaire; the patient's questionnaire was always chosen over the parent. When comparing the attitudes of healthcare professionals to patients and their parents, neither the PEG nor the professional group felt (“agree” or “strongly agree”) that a gastrostomy made it difficult to participate in sports, that it looked bad and was painful as compared with the non-PEG group (Table 4). More responders in the professional and non-PEG group agreed that a gastrostomy was embarrassing. The PEG and non-PEG groups indicated significantly less expectation of improvement in pulmonary function and energy level from feedings than the professional group.TABLE 4: Frequencies of PEG, Non-PEG, Professional Response Less Than the MedianDISCUSSION To maintain anonymity, non-responders were not identified in this study. This may have introduced some bias/limitation in the results. The non-responders may not have been as compliant a group as the responders, and compliance significantly influences outcome of a PEG (12,13). Further research on the relationship between compliance and success of PEG placement is needed. The responses to the PEG questionnaire showed that persons with CF with PEGs were positive about PEG placement. Inadequate weight gain or weight loss or deficient oral consumption of calories were the factors reported by individuals with CF that influenced the decision to place a PEG. The responses to the non-PEG questionnaire revealed that patients without PEGs were apathetic towards the value of PEG placement and were more concerned that the PEG would interfere with sports, be embarrassing, look bad or be painful. Lack of objective knowledge about PEGs was expressed by patients and parents on the non-PEG questionnaire. Professionals also identified felt that patients lacked sufficient knowledge about the procedure. These findings indicate a need for better patient education. Insights from expert nurses involved in care of patients with chronic gastrostomies reveals that parents must be adequately educated about the benefits of PEG before they make a decision on PEG placement (14). The expert nurses emphasized the need for anticipatory planning in making the decision to place a PEG and adjusting to life with a PEG. An important strategy was to have experienced parents talk with parents who might be considering PEG placement. Because the patients with PEGs have found that a PEG does not look bad, is not embarrassing, does not interfere with sports and is not painful, they could help market the positive aspects of a PEG. A list of CF patients with PEGs who are willing to talk with those considering a PEG placement could be developed. The multidisciplinary team could then make appropriate referrals between patients with careful consideration of confidentiality, Health Insurance Portability and Accountability Act regulations and infection control practices. Developing a video of individuals with a PEG participating in various activities could be another way to share the gastrostomy experience. Education needs to be focused on the positive benefits of PEG placement, such as improved growth and increased energy.