Research integration frameworks and methodologies

Mustalahti, K., et.al. (2002). Gluten-Free Diet and Quality of Life in Patients

With Screen-Detected Celiac Disease. Effective Clinical Practice. 5 (3):

Key areas of research

SPECIFIC DATA ANALYSIS

Overview of celiac disease with a focus on patient consequences and lack of treatment options.

Limited, in this case. Brief overview, but no substantial literature review presented.

Used Gastrointestinal Symptoms Rating Scale (GSRS) and Psychological General Well-Being Questionnaire (PGWB) to establish quality of life index.

Analysis of data based on scores from methodological studies. Gluten free diets were associated with improved quality of life.

Over the short-term, a modern gluten free diet with more acceptable offerings and choices will provide an adequate quality of life for most patients.

The authors examined the effects of a gluten-free diet on patients that had "clinically silent -- that is, among people who ingest gluten and feel healthy (or have only minor, nonspecific symptoms) despite having typical gluten-triggered lesions of the small-bowel mucosa" (p. 109). The specific focus of the study was how a gluten free diet would influence the quality of life of patients with silent celiac. Because "psychological general well-being and abdominal discomfort are highly subjective and personal matters that depend, at least in part, on personality and environment" a set of standardized questionnaires were used to compare the subjects. Analysis of the questionnaires showed that "most patients… reported improved psychological well-being and gastrointestinal symptoms…. Implying that asymptomatic patients…. Will benefit from a gluten free diet" (p. 111).

A.4 -- Since there was no actual control group, no individuals who could have been helped with a gluten free diet were denied. Instead, "although the quality of life of patients with screen or symptom-detected celiac disease improved during the first year of a gluten-free diet" the authors are unable to gage long-term effects (p. 112). The authors do acknowledge that their findings may not necessarily be applicable to all countries and all cultures, and therefore ethically need to broaden the scope of their study geographically in order to make their assumptions valid for a larger population. Additionally, it was unclear as to the robustness of the type of gluten free diet included in the study, and likely was based on the individual's preferences and demographics.

A-5 -- Forty patients with screen-detected celiac disease and 21 consecutive patients with symptom detected celiac disease were given two sets of standardized questionnaires that would focus on their quality of psychological life and their quality of gastrointestinal symptoms. Both questionnaires were self-administered due to reasons of privacy and the fact that both issues are extremely personal. The authors "performed repeated measures analysis of covariance to study the significance of possible confounding factors (i.e. age, sex, economic situation and BMI)" to validate responses (p.108). For the purposes of this type of study, with the limitations in time, funding and staff, the standardized questionnaires were valid. Each participant was an adult; each assured of their privacy, and, in this case, it is likely the data is as valid as possible for the age groups and celiac situation.

Part B

B.1 -- The modern nurse's role has expanded enough to be one of the predominant figures in the way individuals manage their prevention of disease risk and their control of issues once disease has occurred. In the case of the gastrointestinal system, studies have shown that when a nurse advises a patient and family on proper diet for a specific condition, that advice is typically taken more seriously. In the case of risk for colon cancer or other gastrointestinal issues, for instance, the use of a low-gluten diet, use of probiotics and prebiotics, as well as fructoligosaccarides in the patient's diet has both symbiotic and therapeutic qualities and can prevent colon issues. In addition, adding pro and pre-biotics to the diet often increases the absorption of more nutrients from food, allowing the individual to feel less hungry, to digest better, and to have less potential gastric upsets (heart-burn, belching, etc.). Prebiotics are non-digestible carbohydrates that act as food for probiotics. Probiotics are found in such foods as yogurt, while prebiotics are found in bananas, onions, garlic, honey, and whole grains. It is relatively easy to add both to the diet, and the positive and proactive effects are well worth the nursing efforts involved (Zeratsky, 2010; Losada, 2001).

Sources:

Losada, M. (2001). Towards a healthier diet for the colon: The influence of fructo-oligosaccharides and lactobacilli on intestinal health. Nutrition Research. 22 (1): 71-84, Retrieved from: http://www.nrjournal.com/article/S0271-5317(01)00395-5/abstract

Zeratsky, K. (2010). Is it important to include probiotics and prebiotics in a healthy diet? Mayo Clinic. Retrieved from: http://www.mayoclinic.com/health / probiotics/AN00389

B.2. Matrix

Author

Source

Research Type

Population Sample

Outcome Measure

Data

Conclusions

Comments

Bebb, et. al.

Alimentary Pharmacology

2005

Primary Questionnaire

126 diagnosed with coeliac disease

Primary patient opinions and data

Patient oriented opinions

Respondents show distinct variation

Dietician probably necessary to maximize efficacy of therapy

Bongiovan-ni, et.al.

Pediatrics

2010

Primary questionnaire

77 children

Survey and Linkert scale on emotional outlook

Patient oriented opinions

Children with celiac disease who attended a week-long gluten free camp showed improvement in numerous psychological factors

Long-term effects, longitudinal studies, population and demographic scales?

Casellas, et. al.

World Journal of Gastro enterology

2008

Multicenter and cross- sectional with questionnaire

340 adults

GIQLI scores and analysis of cross tabulation

Preference scales based on quantitative measures

In untreated celiac, diet is most important variable on patient health.

Gluten free diet control improves quality of life

Ciacci, et.al.

Digestive Diseases and Sciences

2002

Self-administered Questionnaire

114 celiac patients

Cross tabulation with demographic issues

Psych. Measures quantified

Importance of psychological effects on celiac patients

Mixed study, qualitative and quantitative

Gainer, C.

The Nurse Practitioner

2011

Review of literature

Previous research

Diagnostics from previous studies

Data Analysis

It is critical for the modern nurse to take a leadership role in helping patients live a gluten-free life.

Needs expansion into specific ideas on how to be gluten free.

Leffler, et. al.

Digestive Diseases and Sciences

2008

Original research, questionnaire

154 adults

Multivariate analysis based on cross tabulation

Questionnaire data analyzed

There are specific factors related to gluten free dietary adherence

Education is primary tool that focuses on proper dietary issues surrounding celiac

Marnett, et.al.

Annual Review of Pharmacological Toxicology

2002

Research Review

Case Studies

Literature Review

Previous Data reviewed and Analyzed

Use of COX-2 inhibitors to aid patients in preventing colon cancer

Dietary issues with GF diet may not allow the use of NASIDs as much as a regular diet.

Mazzone, et.al.

BMC Pediatrics

2011

MASC score and self-reporting questionnaires

200 children; 100 with celiac, 100 without

Scales and Child Behavior Checklist completed by parents

Several psychological scales measured and cross tabulated

There are increased rates of emotional and behavioral problems in children and adolescents with celiac disease

Self- reported questionnaires should be validated with other, empirical research.

Mustalahti, et.al.

Effective Clinical Practice

2002

Prospective study, medical biopsy and special questionnaire

40 patients

GSRS scale and PGWB psychological scales

Biopsy and questionnaire scales analyzed and compared

Gluten free diets improve quality of life index

What are implications of GFD in the long-run?

Roma, et. al.

Journal of Human Nutrition and Dietetics

2010

Primary compliance with special questionnaire

73 children

Cross tabulation of questionnaire

Special questionnaire

Children have low dietary compliance

Some of the data is based on what parents think children are eating

B3.1

Bebb, J., et.al. (2006). Long-term follow-up of coeliac disease -- what do coeliac patient's want? Alimentary Pharmacology and Therapeutics. 23 (1): 827-31.

This article used a questionnaire sent to 183 patients who had a duodenal biopsy between 1994 and 2004 that was consistent with coeliac disease. A total of 126 patients responded with 88% trying to follow a strict gluten free diet. The results of the research showed that most patients (92%) found outpatient services very helpful, and needed the support and advice of a professional to help with their compliance to a specific diet. The research suggests a more robust non-clinical care protocol would be helpful, although the data set is rather limited and likely needs more longitudinal responses.

Bongiovanni, T., et.al. (2010). Pediatrics. 125 (3): e524-e529.

Children between the ages of 7 and 17, all with celiac disease, were sent to a gluten-free camp for a week. Of the 104 campers, 77 completed a survey dealing with physical and emotional symptoms at the beginning and end of the week. Most found that there were positive effects from a strict gluten free diet, not only on physical symptoms but particularly in the reduction of stress and anxiety surrounding food occasions. The researchers used statistical tools to validate the diet, and the findings that those who had been on a GF diet for less than 4 years would benefit more from the camp seem logical.

Casellas, F., et.al. (2008). Factors that impact health-related quality of life in adults with celiac disease. World Journal of Gastroenterology. 14 (1): 46-52.

In this very robust study, 343 patients, 163 with a GF diet and 177 newly diagnosed with celiac and a normal diet, were surveyed using standard quality of life questionnaires. In untreated CD, the most important factors that influence individual perception of health are the lessening of symptoms and being able to eat a normal diet. For all patients with physical or psychological symptoms, there were vast improvements using a GF diet. This research focused more on quality of life issues that were standardized based on a Health-Related Quality of Life and GIQLI (Gastrointestinal Quality of Life) index system. Because of these standardized scales and the number of responses, the data is more appropriately extrapolated.

Ciacci, C., et.al. (2002). Psychological Dimensions of Celiac Disease. Digestive Diseases and Science. 47 (9): 2082-87.

Many diagnosed with celiac disease also report critical emotional issues the longer they live with the disorder. Many find that there is continual fear and anxiety about a relapse, many find sorry and embarrassment with dining with friends or family, and many express anger at the fact that they have celiac. Adults (n=114) responded to self-administered questionnaires that evaluated the patients' level of knowledge of the disease and the impact of the diagnosis on their lives. Interestingly, quality of life and adherence to a GF diet correlated directly to the socioeconomic level of the patient, with those with higher incomes finding ways to be more compliant. The research is sound and paves the way for further demographic/psychographic studies.

Gainer, C. (2011). Celiac Disease: Helping Patients Life Gluten Free. The Nurse

Practitioner. 36 (9): 14-19.

While not a research study, this is an important overall viewpoint and guideline / template on practical measures for nurses and doctors to help patients with celiac disease find a positive way to live gluten free. There are several suggestions and checklists to help the patient, particularly regarding nutritional deficiencies. The article was a good overview, but likely needs a bit more buttressing with academic evidence.

Leffler, D., et.al. (2008). Factors that Influence Adherence to a Gluten Free Diet

In Adults with Celiac Disease. Digestive Disease Science. 53 (1): 1573-81.

The only treatment available for celiac patients is a life-long commitment to a gluten free diet. Factors contributing to adherence, though, are not well researched. A special questionnaire was developed and administered to 154 adults who had celiac disease and who then had a standardized gluten free diet evaluation by an experienced nutritionist. The primary issues for non-compliance were having other food allergies, concerns over cost and/or exposure, perceptions about a gluten free diet, and the ability to follow this type of diet regardless of mood or stress. Additional research is necessary to more fully correlate demographics and psychographics with non-compliance and to provide reasonable alternatives for adults to consider regarding adopting a specialized diet for their condition.

Marnett, L. And Dubois, R. (2002). COX-2: A Target for Colon Cancer Prevention.

Annual Review of Pharmacological Toxicology. 42 (1): 55-80.

Numerous studies have shown that NASIDs not only help with anti-inflammatory properties, but may have preventative effects for certain cancers. Specifically, the COX-2 enzyme has been shown to mitigate precancerous growth in patients with a high-probability of gastrointestinal issues. While there are issues surrounding long-term use of NASIDs, many including gastric upset, there are certainly ways to minimize negative effects. This may particularly be true for celiac patients on a GF diet, especially since they may be more susceptible to the osteo and cardiac effects of long-term NASID usage.

Mazzone, L., et.al. (2011). Compliant gluten-free children with celiac disease: an Evaluation of psychological distress. Pediatrics. 11 (46): 2-6.

Often, children with chronic diseases have increased risks for psychological and emotional issues. This study used several standard psychological questionnaires to evaluate differences in psychological profiles between celiac and non-celiac children with a mean age of about 10. The subjects with celiac reported a higher rate of anxiety and depression compared to the control subjects. The celiac patients also more difficulty in social situations, particularly those involving food. The research suggests that the increased rate of psychological problems in patients with celiac emphasizes the importance of early detection and intervention (psychologically) for these children.

Mustalahti, K., et.al. (2002). Gluten-Free Diet and Quality of Life in Patients

With Screen-Detected Celiac Disease. Effective Clinical Practice. 5 (3):

105-13.

Many people who are screen detected with celiac disease never have severe symptoms, or if they do, they are minor. For most people, though, the prescribed treatment of a gluten free diet has important quality of life concerns. This study evaluated 40 patients with variable levels and severity of celiac. The intervention was an explanation about a gluten free diet by a physician. The study found that a gluten free diet was associated with improved quality of life and now that there are more opportunities to shop for gluten free products, concerns about the overall burden of such a diet may be unfounded.

Roma, E., et.al. (2010). Dietary Compliance and Life Style of Children with Celiac

Disease. Journal of Human Nutrition and Diet. 23 (1): 176-82.

It is difficult to motivate many adults to comply with a gluten free diet to mitigate their celiac symptoms; and far more difficult to motivate children, especially at school or out with friends. This study evaluated 73 children with a median age of 9.4 through questionnaires completed by their parents. The study found that most children who did not comply with a GF diet did so because of poor taste, dining outside the home, and a lack of products. The research suggests that there needs to be a more concerted parental effort to help children comply with a GF diet that will improve their quality of life.

B3.2 -- Each author presented compelling evidence that the only solid and scientifically proven way to control celiac disease is through a very strict gluten free diet. All research presented verified evidence that those individuals who actually eliminated all glutens from their diet were able to alleviate the physical symptoms, as well as improve their mental state and quality of life.

B3.3 -- Questionnaires were the tool of choice for each of the research study. Since the authors were trying to determine three major issues (physical health, mental health, and adherence to a GF diet), the authors chose to trust questionnaire data. Most of the authors, though, used basic statistical techniques to validate answers.

B3.4 - Each research study used varying types of questionnaires: self-administered or filled out by parents or caregivers. This gives a clear indication of trends, but may not always be inclusive or totally accurate in each situation. With additional time and funds, a more quantitative approach to specific types of GF diets, as well as greater specificity in GF products used might be more helpful. Additionally, most of the studies used fairly small sample sizes. Broadening the sample demographically and geographically might also help glean additional insights into the relationship between certain personal attributes, physical and psychological health, and a GF diet.

B4 -- Celiac disease is also known as gluten intolerance. It is a disorder that affects about 1 in 133 Americans, with symptoms of diarrhea, weight loss and malnutrition to more serious gastrointestinal disorders. Typically, the disease affects those of Northern European descent, but recent studies show that it may also affect Hispanic, Black and Asian populations that have been living in the West for generations. Those individuals affected tend to suffer damage to the intestines from specific food-grain antigens that are found in wheat, rye and barley (Leffler).

Based on the research, the only medically acceptable treatment for celiac disease is a continuous 100% gluten-free diet. While this is far easier in the 21st century in the developed world than ever before, most patients report that they need the support of a doctor and staff to better understand ways in which they can cope with the disease (Bebb). Strict adherence to a gluten-free diet allows the intestines to heal which leads typically to a resolution of most symptoms and eliminate the heighted risk of colon cancer. Consultation with a trained dietician is usually necessary to help patients find ways to eat a complete diet and remain healthy. Until recently, though, the diet was cumbersome, and failure to comply resulted in not only a recurrence of physical symptoms, but of psychological issues as well (Casellas). Persistent symptoms often include mouth ulcers, osteoporosis, diarrhea and irritable bowels which follow through with an increased rate of anxiety, fatigue, depression and musculoskeletal pain. However, in almost every research case, a gluten free diet not only alleviated the physical symptoms, but in as little as a week's time, mitigated the psychological factors and increased the quality of life in patients of all ages (Mazzone; Bongiovanni). Each article under consideration used self-administered questionnaires either directly to patients or by parents. There is a danger to this type of research, even if statistical analysis is used to validate trends, that data may not be as objective as it would be if measured by an objective party. While each article suggests a similar finding, e.g. The improvement of both physical and mental symptoms from celiac using a gluten free diet, there are also a number of variables that were not address. These include more strict analysis of demographics and psychographics; the quality and type of gluten-free options.