Cancer Nutrition Study

Cancer Nutrition Study Sponsored by Delaware North Companies March 2013 Providing Marketing Research with Wisdom, Honesty, and Precision WHP Research, Inc. 6710 Glenbrook Road Chevy Chase, MD 20815 www.whpresearch.com 301.986.1824 EFTA01192170 Table of Contents ■ Executive Summary ■ Detailed Findings J Participant Profile J Type of Cancer J Treatment J Medication, Supplements and Vitamins J Demographics J Symptoms J Behavior Changes J Weight Changes J Exercise, Energy and Work Food Shopping and Preparation - Experience with Food and Beverages since beginning Treatment J Eating and Drinking Behaviors J Dietary Changes J Taste Sensitivity J Foods and Beverages Avoiding J Foods and Beverages Preferring J Appeal of other Products and Services Appendix 9 EFTA01192171 Executive Summary Research Background and Objectives Methodology Considerations and Suggestions Summary of Findings EFTA01192172 Research Background and Objectives Cancer patients struggle with nutrition during treatment, and the symptoms related to eating during treatment might include decreased or increased appetite, altered taste and smell, early satiety, mouth sores, nausea, extreme fatigue, constipation/diarrhea and other symptoms. This survey will explore the impact of taste and smell on nutritional intake and quality of life, and will ask questions about consumption of food, intake of fluids, food preparation and barriers to cooking and shopping for food during cancer treatment. Specifically, the research: ■ Provides a profile of patients on active cancer treatment Type of cancer, when diagnosed, type of treatments Eating drinking preferences, usage of supplements, activity levels Symptoms experiencing and what precludes them from having healthy diets Demographic information ■ Assesses the appeal of different foods and beverages (ones avoiding and preferring) ■ Assesses appeal of products and services al Generates a list of recipes or food dishes that appeal to them during treatment El Identifies differences, if any, by type of traveler or demographic information Results will be shared with the Culinary Institute of America master chefs to identify products, develop recipes or tips, products or services that will appeal to cancer patients. Further research is then recommended to gain reactions to the food products, recipes and preparation of in- home meals via in-home or in-patient taste tests or placements. 4 EFTA01192173 Methodology ■ This research is a joint effort between Delaware North Companies, the Culinary Institute of America, WHP Research and seven medical centers. The survey was developed in partnership to bring together medical and marketing research expertise. Once the centers received IRB approval, surveys were collected from cancer patients who were actively undergoing treatment. Paper surveys were distributed and collected by nurses, therapists or nutritionists in waiting areas or other clinical areas. Surveys were completed anonymously, with the option for patients to answer any or all questions. All participants are 18 years of age or older. ■ A total of 1,203 surveys were collected and analyzed from seven medical centers: ▪ Roswell Park Cancer Institute (302) ▪ New York University Clinical Cancer Center (298) ▪ Dana Farber/Brigham and Women's Cancer Center (199•) ▪ Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (118) University of Chicago Comprehensive Cancer Center (109) Mayo Clinic Cancer Center (100) • Cedars-Sinai / Samuel Oschin Comprehensive Cancer Institute (77) • Surveys were collected between April and December, 2012. See Appendix for questionnaire. • A survey completed by a participant <18 years old was not included. EFTA01192174 Considerations and Suggestions Based on this research study, the following suggestions are offered or the following factors ought to be considered when designing menus and recipes to best serve cancer patients. Most patients feel it would be extremely or very helpful to have recipes to better manage their symptoms. Most of them also feel it would be helpful to have written information on how to eat better during cancer treatment. In addition, having pre-packaged or prepared meals available for sale would be helpful, especially when the meals are designed and promoted specifically for cancer patients. Given that different cancer patients might have different symptoms related to food, the Team might want to design some menu items geared to specific types of patients (e.g., avoiding constipation -causing menu items with lung cancer patients or diarrhea-causing menu items with gastrointestinal cancer patients). In addition, menus also need to take into account patients' other health problems, such as diabetes and/or heart disease. ■ The majority of patients have less energy. Patients who have less energy or have lost weight unintentionally since beginning treatment are the most likely to have symptoms and are the most likely to have decreased appetites and lower food consumption. These patients are most in need of nutrients to help them feel better and to help increase energy levels. Those with low energy levels especially desire recipes that will help them manage their symptoms. However, these recipes must be easy to prepare, not requiring a lot of energy. In addition, liquid nutrition that tastes good might entice those with unintentional weight loss to consumer more calories, especially breast and hematological patients who are the most likely to have an increased desire for beverages. Most patients have increased taste sensitivities; decreased taste sensitivities is less of an issue. Patients preferring food served at room temperature are the most likely to have increased taste sensitivities. The most often increased taste sensitivities are metallic, salty and sweet. Since greasy and fried foods are being avoided by about one-half of the patients, menus should not feature too many of these types of foods. Although spicy foods are also being avoided by a sizeable number of patients, other patients seek spicy foods. Thus, labeling on a menu is critical, identifying if its a "spicy" or "bland" recipe/dish. 6 EFTA01192175 Considerations and Suggestions, Cont'd. ■ Some ethnic differences are noted. Most Caucasians are not avoiding meat. African Americans are the most likely to be avoiding salty foods. Once again, labeling and identifying foods are critical, such as if low salt, low sugar, low fat, all natural (not processed), easy to digest and organic. When designing menus for patients, the aromas/smells that might arise when cooking ought to be considered. In particular, six out of ten breast patients find aromas/smells annoying. These patients also are the least likely to find food appetizing when prepared at home. ■ Creating hot food items will have the most appeal since hot foods are most desired, among those with a food temperature preference. Foods with the greatest appeal are fruits and vegetables, soups, poultry, pasta and fish. Those eating less food since beginning treatment are the least likely to prefer fish and meat. Based on analysis of all the recipes and food preferences provided, recipes ought to be designed taking into consideration the following categories and the recipes suggested by cancer patients (see verbatim comments): ▪ Carb-heavy foods (e.g., pastas, casseroles, rice, breads, potatoes) _J Comfort foods (e.g., soups, stews, eggs, pastas) _J Soft, smooth and creamy foods (e.g., smoothies, ice cream, pudding, yogurts, eggs) _J Sweets (e.g., fruit pies, cakes, cookies, ice cream) _J Spicy or flavorful (e.g., Asian, Mexican, Indian, Thai, Chinese, Italian) • Salty (e.g., popcorn, chips, nuts, crackers, pretzels) ▪ Bland (e.g., mashed potatoes, rice, toast, bananas, eggs, soup, oatmeal) • Meats/seafood (e.g., steak, chicken, fish) • Fruits/vegetables (e.g., bananas, apples, oranges, potatoes, green vegetables) EFTA01192176 Summary of Findings Participant Profile Survey participants represent a mix of patients with different types of cancer, primarily: solid (29%), hematologic malignancies (21%), breast (19%), gastrointestinal (15%) and lung (14%). ▪ Solid tumors are most often gynecological (42%), prostate, kidney or bladder (22%), head or neck (17%) or brain or spinal (13%). ▪ Hematologic malignancies are most often lymphoma (40%), multiple myeloma (35%) or leukemia (27%). ■ On average, they were first diagnosed about nine months ago, with almost one-half of them (47%) diagnosed more than one year ago. About 10% were diagnosed within the past two months. ■ Nine out of ten survey participants are undergoing chemotherapy. About one-third of those with solid or lung cancer are receiving a mix of chemotherapy, hormone therapy and/or radiation. ■ Most participants do not have other health problems (61%). Among those with other conditions, diabetes and heart disease are most prevalent. ■ A mix of men (39%) and women (61%) participated, with about one-half between 45 to 64 years (48%), and most Caucasian (80%). ■ Survey participants are likely to be taking prescriptions, with anti-nausea (45%), pain medication (33%) and steroids (26%) being most common. About one-third of the participants are taking nutritional supplements, with one-fifth taking Ensure/Boost. About seven out of ten participants are taking vitamins or minerals, with vitamin D (30%), calcium (23%), and multi-vitamins (22%) having the highest usage. ■ Only about three out of ten participants are taking dietary supplements or herbs. Fish oil (12%) and herbal tea (9%) are mentioned most often. 8 EFTA01192177 Summary of Findings, Cont'd. Symptoms Symptoms vary somewhat based on the type of cancer a participant has. Symptoms most prevalent are: ▪ GI: significant fatigue, poor appetite, diarrhea, nausea and/or vomiting, dry mouth, gas/bloating ▪ Lung: significant fatigue, poor appetite, constipation, shortness of breath/no oxygen, dry mouth ▪ Solid: significant fatigue, constipation, poor appetite, nausea and/or vomiting, dry mouth ▪ Breast: significant fatigue, constipation, dry mouth, reflux/indigestion ▪ Hema: significant fatigue, constipation, dry mouth, poor appetite ■ Symptoms are most likely to occur among those ... ▪ Experiencing less energy since beginning treatment ▪ Losing weight unintentionally ▪ Consuming less food and beverages since beginning treatment Changes ■ In terms of weight changes, more patients have lost weight (45%) than gained weight (24%). ▪ However, breast patients are about equal, with 32% losing weight and 29% gaining weight. ▪ Weight change tends to be unintentional (88%) versus intentional (12%). However, for 19% of GI patients their weight change has been intentional. ▪ About one-half of those with less energy have lost weight. More than three-fourths of the patients (78%) have less energy, two-thirds (67%) are working less often and three-fifths (60%) are exercising less often since beginning treatment. ■ Two-thirds of the patients (67%) are able to shop for food all or most of the time, 59% are able to prepare meals, and 53% consider themselves to be the primary food preparer. ▪ About one-fifth of those 75 years or older are not able to shop for food (17%) or prepare meals (19%). ▪ As would be expected, those with less energy and unintentional weight loss are the least likely to shop for food and/or prepare meals. 9 EFTA01192178 Summary of Findings, Cont'd. Food and Beverage Behavior Since beginning treatment, food appetites have lessened (39% vs. 15% increased) and food consumption is more likely to have waned (30% eating less often vs. 22% eating more often). ▪ Decreases in appetite are most prevalent among GI and lung patients. ▪ However, about the same number of GI (and also hema) patients are eating more often as are eating less often. ▪ Those with less energy and those with unintentional weight losses are the most likely to have decreased appetites and lower food consumption. ■ Since beginning treatment, increases are noted on the desire for beverages (31% vs. 16% decreased) and beverage consumption (49% more often vs. 11% less often). ▪ Increases in thirst are most realized among breast and hema patients. ▪ Although those with less energy and unintentional weight losses are more likely to have increases (versus decreases) in desire for beverages and beverage consumption, when compared to those with the same/more energy or the same/more weight gains, significantly more of the less energy/weight loss individuals have declines on these measures. Since beginning treatment, alcoholic beverage intake has dropped (78% drinking less often). About one-half of the patients (51%) are drinking/eating about the same as they were before treatment. _ Those with less energy and unintentional weight losses are the most likely to have had dietary changes. Almost 60% of the patients have increased taste sensitivities; 18% have decreased taste sensitivities. ▪ Increased sensitivities are most often metallic (19%), salty (15%), and sweet (14%). ▪ Those 75 years or older are most likely to have increased taste sensitivities (75%). ▪ Those with less energy and unintentional weight losses are the most likely to have increased and/or decreased taste sensitivities. About one-half of them have increased taste sensitivities; one-fifth have decreased taste sensitivities. ▪ Those with reduced food and beverage consumption are the most likely to have increased taste sensitivities. ▪ Patients preferring food served at room temperature are also most likely to have increased taste sensitivities. 10 EFTA01192179 Summary of Findings, Cont'd. Foods Avoiding • Most patients (80%) are avoiding some types of foods, especially greasy/fried foods (52%) and spicy foods (42%). About 47% of patients avoid foods that they used to eat due to medical advice; 57% due to intolerance; 70% for other reasons. ▪ Those with less energy and those with unintentional weight losses tend to avoid more foods than others, especially greasy, spicy, acidic, Indian and Mexican foods. ▪ Those 75 years or older are less likely to avoid foods than younger patients. ▪ Caucasians are the least likely to avoid meat (only 20% avoiding). ▪ African Americans are the most likely to avoid salty foods (42%). ■ When asked open-ended, other foods avoiding (not already listed) include foods that are high fat/rich, processed, hard to digest, high sugar content, cold temperatures, raw fish, shellfish and non-organic fruits/vegetables. Beverages Avoiding • Alcoholic beverages (50%+), soda/pop/tonic (39%) and coffee (28%) are the beverages most often avoided. Lung patients are the least likely to avoid coffee (only 16% avoiding). ▪ Coffee is especially being avoided among those with low energy levels and weight losses. ▪ Those 75 years or older are the least likely to avoid specific beverages. ▪ Caucasians are the least likely to avoid soda/pop/tonic and coffee. Aromas/Smells Avoiding • About one-half (48%) of all patients are bothered by aromas/smells, with the most annoying aromas/smells being cleaning solutions and perfumes/colognes. ▪ Breast patients are the most likely to find aromas/smells annoying (60%). ▪ Those 75 years or older are the least likely to be bothered by aromas/smells. ▪ Other ethnicities (not White or Black) are most sensitive to the smell of fish and food cooking. ▪ Those with less energy, weight losses and dietary changes are most sensitive to aromas/smells. 11 EFTA01192180 Summary of Findings, Cont'd. Food Preference Most patients (65%) do not have a food temperature preference. Those with a preference, desire hot foods. African Americans are the most likely to prefer hot foods (43%), followed by those 75 years or older (30%). Those with less energy and those with weight losses are more likely than others to have a food temperature preference. ■ Food is more appetizing when prepared at home (43%) versus eating out (13%) or bringing in (5%). The reminder do not have a preference. ▪ Breast cancer patients are the least likely to find food more appetizing when prepared at home (only 35%). ▪ African Americans are the most likely to find food more appetizing when prepared at home (52%). ▪ One-fifth (19%) of those with weight gain are most likely to prefer eating out. ■ Fruits/vegetables (69%), soups (62%), poultry (61%), pasta (55%) and fish (53%) are most favored. ▪ Those 75 years and older prefer soups, poultry, pasta and meat, while others prefer more ethnic/spicy foods. ▪ African Americans have a strong preference for fish (70%). ▪ Those with more energy are more likely to find more foods appealing. ▪ Those eating less food since beginning treatment are less likely to prefer fish and meat versus those eating the same or more food. ■ When asked unaided, foods that are most appealing to patients can be grouped as: ▪ Carb-heavy foods (e.g., pastas, casseroles, rice, breads, potatoes) ▪ Comfort foods (e.g., soups, stews, eggs, pastas) ▪ Soft, smooth and creamy foods (e.g., smoothies, ice cream, pudding, yogurts, eggs) ▪ Sweets (e.g., fruit pies, cakes, cookies, ice cream) ▪ Spicy or flavorful (e.g., Asian, Mexican, Indian, Thai, Chinese, Italian) ▪ Salty (e.g., popcorn, chips, nuts, crackers, pretzels) ▪ Bland (e.g., mashed potatoes, rice, toast, bananas, eggs, soup, oatmeal) ▪ Meats/seafood (e.g., steak, chicken, fish) ▪ Fruits/vegetables (e.g., bananas, apples, oranges, potatoes, green vegetables) 12 EFTA01192181 Summary of Findings, Cont'd. Beverage Preference • Water is the most preferred beverage (74%), followed by fruit juice (48%), tea (44%) and coffee (40%). ▪ GI patients are the most likely to prefer fruit juice (58%). ▪ About one-half of breast patients (51%) prefer tea. ▪ African Americans also have a great desire for tea (54%). ▪ Coffee has the greatest appeal among those 75 years or older (54%). ▪ Those who have lost weight prefer sports drinks (25%) more than other patients. Appeal of Products and Services • When asked about specific products and services, interest in recipes and written information is the highest: • Recipes that help you manage your symptoms (59% would find it extremely or very helpful) • Written information on eating better during cancer treatment (59%) • Pre-packaged or prepared meals to purchase that are full of nutrients needed to help you feel better (46%) • Videos on creating easy, highly nutritional meals (32%) • Liquid nutrition that tastes like food instead of milk shakes (18%) Some differences are found by type of patients: ▪ Breast patients are the most likely to find these products and services helpful. ▪ Adults under 75 years are more likely to feel that these products and services would be helpful than those 75 years or older. ▪ Caucasians are less interested in these products and services than others. ▪ Recipes that would help manage symptoms would be most helpful to those with less energy and unintentional weight loss. ▪ Having pre-packaged or prepared meals would be most helpful to those lacking energy while having better tasting liquid nutrition might entice those with unintentional weight loss to consume more calories. ▪ Those with changes in food consumption are most likely to find recipes helpful. ▪ Those who are eating less food are also the most likely to find tasty liquid nutrition helpful versus others. 13 EFTA01192182 Detailed Findings Participant Profile Symptoms Behavior Changes Experience with Food and Beverages since beginning Treatment Foods and Beverages Avoiding Foods and Beverages Preferring Appeal of other Products and Services EFTA01192183 Participant Profile EFTA01192184 First Diagnosis On average, patients were first diagnosed with cancer 9.4 months ago. Survey participants represent a mix of different types of cancer. Those with hematologic malignancies were diagnosed on average 10.6 months ago, while those with gastrointestinal cancers were diagnosed on average 8.1 months ago. Base sizes: Total GI (182) Type Lune (169) of Cancer Solid Breast Hema (1198) (343) (226) (255) Within past 2 months 11 15 11 11 7 12 Within past 4 months 16 17 14 16 20 12 Within past 6 months 12 15 12 12 13 10 Within past 9 months 6 12 8 6 6 2 Within past year 7 9 9 5 7 6 More than one year ago 47 32 46 49 47 58 Mean 9.4 mo. 8.1 mo. 9.5 mo. 9.6 mo. 9.6 mo. 10.6 mo. =Significantly higher than all numbers =Significantly lower than all numbers = Significantly higher than lowest number Q4 - When were you first diagnosed with cancer? 16 EFTA01192185 Type of Cancer A mix of different types of cancer patients participated. Gynecological cancer represents the largest group among those having solid tumors. Base sizes: Type of Cancer Total GI (182) Lung (169) Type of Cancer Solid Breast Hema (1198) (343) (226) (255) Solid tumors - Net 29 5 16 100 5 2 Gynecological 12 1 1 42 2 1 Prostate, kidney or bladder 6 1 5 22 1 1 Head or neck 5 1 2 17 0 0 Brain or spinal 4 2 8 13 2 0 Soft tissue sarcoma 2 1 1 6 0 0 Osteosarcoma 1 1 2 0 0 Hematologic malignacies - Net 22 1 2 2 1 100 Lymphoma 9 1 2 1 40 Multiple myeloma 8 o 1 1 0 35 Leukemia 6 o o 1 27 Breast cancer 19 1 2 3 100 1 GI cancers - Net 15 100 5 3 1 1 Gastrointestinal 9 61 2 1 * 1 Pancreatic, liver or gall bladder 7 44 S 2 * Lung cancer 14 5 100 8 2 2 Bone marrow transplant 2 1 0 0 5 Other malignancies 8 4 4 2 2 1 O5 - What type of cancer do you have? Multiple answers accepted. 17 EFTA01192186 Treatment Nine out of ten patients surveyed are undergoing chemotherapy. About one-third of those with solid or lung cancer are receiving a mix of chemotherapy, hormone therapy and/or radiation. Base sizes: Treatment Total GI (182) % Luna (169) S Type of Cancer SolidSolid Breast Hema (1198) 21 (343) ii (226) ii (255) ii Chemotherapy 90 99 97 90 85 89 Radiation 15 11 27 25 11 4 Surgery 8 7 8 14 9 4 Hormone Therapy 5 1 1 8 13 Transplant 2 1 0 * 0 5 None at this time or between treatments 4 1 2 2 4 9 Nets: Only chemotherapy 71 82 66 59 70 81 Only hormone therapy 2 0 0 3 7 0 Only radiation 2 0 1 3 3 0 Only chemo and radiation 2 1 1 4 3 0 Mix of chemo, hormone and/or radiation 21 17 31 34 17 9 =Significantly higher than all numbers =Significantly lower than all numbers = Significantly higher than lowest number Q6 - Which of the following treatments, if any, are you currently receiving? Multiple answers accepted. 18 EFTA01192187 Gender, Age and Ethnicity On average, the patients are 60 years old. Eight out of ten patients who participated in the survey are Caucasian. GI and Hema patients skew male. Breast cancer patients are the most ethnically diverse and youngest, on average. Base sizes: Total GI (182) Type aLg (169) of Cancer Solid Breast Hema (1198) (343) (226) (255) 79 79 79 Gender Female 61 43 61 60 98 44 Male 39 57 39 40 2 56 Age 18 to 24 1 1 0 2 0 2 25 to 34 3 4 0 4 4 1 35 to 44 9 5 4 6 23 7 45 to 54 20 20 12 19 27 17 55 to 64 28 32 29 30 23 23 65 to 74 27 25 40 28 16 34 75+ 13 14 15 11 7 15 Average 60 yrs. 61 yrs. 65 yrs. 60 yrs. 53 yrs. 65 yrs. Ethnicity Caucasian 80 84 83 82 76 81 African American 9 5 11 6 14 10 Hispanic 4 4 2 5 4 4 =Significantly higher than all numbers Asian 3 3 2 3 4 1 =Significantly higher than lowest number Other 4 5 2 5 3 4 =Significantly lower than all numbers 01 - Are you: Q2 - What is your age? Q3 - What is your ethnicity? 19 EFTA01192188 Other Health Problems About six out of ten patients do not have any other health problems. One in ten patients have diabetes and/or heart disease. About one-fifth of GI patients also have diabetes. Many lung cancer patients also have lung and/or heart disease. Base sizes: Other Health Problems Total GI (182) Lung (169) Type of Cancer Solid Breast Hema (1198) (343) (226) (255) Diabetes 13 19 14 11 11 13 Heart disease 10 9 15 10 3 11 Lung disease 5 2 20 5 3 5 Kidney disease 2 0 4 2 1 3 Liver disease 2 6 1 2 3 2 HIV/AIDS 1 2 0 * 1 1 None of the above 61 58 56 61 66 62 Other 17 14 13 19 21 17 =Significantly higher than all numbers = Significantly lower than all numbers = Significantly higher than lowest number Q8 - Which of the following health problems, if any, do you have? Multiple answers accepted. 20 EFTA01192189 Medications and Nutritional Supplements Anti-nausea, pain medications and steroids are most prescribed. Three out of ten patients are not taking any medications. Two-thirds are not taking any nutritional supplements. Breast cancer patients are the least likely to be on prescription medications and/or nutritional supplements. Base sizes: Prescription Medications Total GI (1821 Type Ltfil (169) of Cancer Solid Breast Hema (1198) (343) 96 (226) (255) Anti-nausea 45 58 48 SO 36 39 Pain medication 33 31 37 36 30 33 Steroids 26 20 29 26 21 34 Antibiotics 15 9 12 13 10 31 Sedatives 9 7 12 11 11 7 Appetite stimulants 3 7 2 2 3 2 Anticonvulsants 2 1 2 S 1 1 Neuroleptics 2 1 2 1 1 3 None of the above 29 26 27 24 41 25 Nutritional Supplements Ensure/Boost 20 28 31 21 11 18 Protein Shake 6 9 6 6 3 5 Carnation Instant Breakfast 5 5 6 7 3 5 Protein Powder 5 6 6 6 5 4 Glucerna 2 6 3 2 1 2 Muscle Milk 1 3 0 1 1 1 BeneCalorie 2 1 0 0 Nepro • 0 0 0 0 r Significantly higher than all numbers None of the above 65 52 57 64 76 70 r Significantly higher than lowest number Other 7 9 7 7 8 4 r Significantly lower than all numbers Q9 - Which of the following prescription medications, if any, are you taking? Multiple answers accepted. O10 - Which of the following nutritional supplements, if any, are you taking? Multiple answers accepted. 21 EFTA01192190 Vitamins/Minerals Vitamin D and Calcium are most often taken. Compared to other patients, those with Solid or Breast cancer are more likely to be taking calcium. Lung patients are most likely to take folic acid. Base sizes: Vitamins / Minerals Total GI (182) Type aL (169) of Cancer Solid Breast Hema (1198) (343) (226) (255) Vitamin D 30 25 23 30 36 34 Calcium 23 14 16 26 31 20 Multi-vitamins (MVI) 22 26 23 19 19 29 Multi-vitamins with minerals 13 15 12 12 14 12 Vitamin 612 12 9 17 12 9 14 Folic Acid 10 6 28 7 4 12 Magnesium 10 5 6 15 7 10 Vitamin B - complex 10 7 7 10 11 14 Vitamin C 10 6 9 13 14 8 Potassium 8 7 6 7 9 9 Iron 7 12 5 5 6 5 Vitamin 66 6 5 6 9 8 3 Vitamin E 5 3 6 5 5 5 Zinc 3 2 3 2 4 3 Biotin 2 2 1 2 3 2 Vitamin A 1 1 1 2 1 1 None of the above 31 36 28 31 34 29 r Significantly higher than all numbers Other 6 3 5 7 7 6 r Significantly higher than lowest number r Significantly lower than all numbers Ctll - Which of the following vitamins/minerals, if any, are you taking? Multiple answers accepted. 97 EFTA01192191 Dietary Supplements/Herbs Most patients are not taking dietary supplements or herbs. Fish oil and herbal teas are the most often mentioned dietary supplements/herbs. Base sizes: Dietary Supplements / Herbs Total GI (182) Type Lung (169) of Cancer SolidSolid Breast Hema (1198) (343) (226) (255) Fish oil 12 7 13 13 11 14 Herbal tea 9 7 12 11 12 6 Flaxseed 6 5 4 6 5 7 Co Q10 enzyme 4 3 4 4 5 3 Fiber 4 5 5 5 3 4 L-Glutamine 3 4 2 5 1 2 Milk Thistle 2 2 1 2 3 1 Wheat Grass 2 3 2 2 4 Alpha Lipoic Acid 1 2 1 2 1 1 Chinese herbals 1 2 2 1 1 L-Carnitine 1 1 1 1 1 1 L-Lysine 1 1 1 1 1 Lutein 1 1 3 1 2 2 Saw Palmetto 2 0 0 0 Black Cohosh * 1 1 * 0 0 St. John's wort * 0 1 0 1 0 r Significantly higher than all numbers None of the above 71 76 72 68 71 71 r Significantly higher than lowest number = Significantly lower than all numbers O12 - Which of the following dietary supplements/herbs, if any, are you taking? Multiple answers accepted. 23 EFTA01192192 Symptoms EFTA01192193 Symptoms At least one-fourth of the cancer patients' are experiencing significant fatigue, constipation, poor appetite, dry mouth and/or nausea and/or vomiting. The top four symptoms by type of cancer are circled. Base sizes: Symptoms Total GI (182) (1198) Significant fatigue 41 Constipation 33 27 Poor appetite 31 Dry mouth 27 30 Nausea and/or vomiting 26 Gas/bloating 23 29 Quickly feeling full 21 24 Reflux/indigestion 21 21 Diarrhea 20 Increased sensitivity to smells 17 17 Shortness of breath, no oxygen 17 12 Mouth/tongue sores 12 13 Trouble swallowing 9 7 Sore throat 8 5 Severe pain (6+ out of 10) 7 5 Sore/bleeding gums 6 6 Decreased sense of smell 6 6 Trouble chewing 3 3 Loss of teeth 2 1 Shortness of breath, require oxygen 2 1 None of the above 16 14 Q7 - What symptoms, if any, do you have? Multiple answers accepted. = Top 4 symptoms by type of cancer Type of Cancer Luna Solid Breast Hema (169) (343) (226) (255) 21 23 20 22 15 16 10 14 7 10 7 5 2 4 7 14 26 24 23 20 18 18 14 13 10 9 9 9 5 3 1 14 20 26 24 25 16 15 8 8 8 5 3 1 1 19 22 15 16 13 15 13 19 9 5 7 6 2 8 2 2 3 18 25 EFTA01192194 Those experiencing less energy since they began treatment and those who have lost weight, unintentionally, are the most likely to experience symptoms. Total Energy Level More/Same Less Weight Change (unintentional) Gain Same Loss Base sizes: (1198) (253) (892) (215) (354) (456) Symptoms Significant fatigue 41 12 51 39 35 53 Constipation 33 22 36 35 32 34 Poor appetite 31 15 35 13 21 50 I Dry mouth 27 16 30 22 22 35 Nausea and/or vomiting 26 14 29 21 19 36 Gas/bloating 23 14 26 27 18 26 Quickly feeling full 21 10 24 13 16 33 Reflux/indigestion 21 13 24 22 20 23 Diarrhea 20 13 23 16 18 24 Increased sensitivity to smells 17 7 20 14 17 20 Shortness of breath, no oxygen 17 7 20 20 15 20 Mouth/tongue sores 12 6 14 12 10 13 Trouble swallowing 9 5 10 5 6 12 Sore throat 8 5 8 7 6 9 Severe pain (6+ out of 10) 7 3 9 8 4 11 Sore/bleeding gums 6 2 7 8 5 7 Decreased sense of smell 6 4 7 6 3 8 Trouble chewing 3 3 3 1 2 5 Loss of teeth 2 1 2 2 1 2 Shortness of breath, require oxygen 2 2 3 1 1 5 None of the above 16 36 10 21 22 8 Q7 -What symptoms, if any, do you have? Multiple answers accepted. =Significantly highest or higher than both numbers = Significantly lowest or lower than both numbers = Significantly higher than lowest number 26 EFTA01192195 Almost all of the patients who are consuming less food/beverages since beginning treatment are experiencing some symptoms. Base sizes: Symptoms Total Eating Behavior More Same Less (1198) (251) (565) (349) Significant fatigue 41 45 32 57 Constipation 33 36 It 28 39 Poor appetite 31 18 13 68 Dry mouth 27 33 • 17 41 Nausea and/or vomiting 26 25 17 41 Gas/bloating 23 29 it 19 26 Quickly feeling full 21 18 12 38 Reflux/indigestion 21 22 17 28 Diarrhea 20 20 17 27 Increased sensitivity to smells 17 24 II 924 Shortness of breath, no oxygen 17 17 14 23 Mouth/tongue sores 12 13 8 17 Trouble swallowing 9 7 5 16 Sore throat 8 6 6 12 Severe pain (6+ out of 10) 7 6 3 15 Sore/bleeding gums 6 6 4 9 Decreased sense of smell 6 6 4 9 Trouble chewing 3 1 2 5 Loss of teeth 2 2 1 3 Shortness of breath, require oxygen 2 2 2 3 None of the above 16 14 23 4 Q7 - What symptoms, if any, do you have? Multiple answers accepted. Drinking Behavior More Same Less (570) (469) (126) 43 38 55 36 26 II 44 27 28 57 19 41 20 46 24 22 25 21 18 21 18 21 18 11 14 17 8 9 7 8 6 8 6 6 4 5 7 6 3 3 6 2 2 1 2 3 3 6 31 27 19 21 12 M I33 29 30 21 15 11 13 10 I 13 20 =Significantly highest or higher than both numbers = Significantly lowest or lower than both numbers =Significantly higher than lowest number EFTA01192196 Behavior Changes EFTA01192197 Weight Changes More patients have lost weight, unintentionally, than have gained weight. When looking at gains versus losses, more patients have lost weight than gained weight, except for Breast patients who are divided. The weight change tends to be unintentional; however, for GI patients, one-fifth of their weight change is intentional. Total GI Lung Type of Cancer Solid Breast Hema Base sizes: (1198) (182) (169) (343) (226) (255) % Gained 24 20 27 25 29 22 Gained more than 20 pounds 4 6 6 4 4 3 Gained 11 to 20 pounds 6 2 4 7 10 5 Gained 5 to 10 pounds 14 12 17 14 15 14 Stayed about the same weight 31 30 24 32 39 29 Lost 45 51 50 43 32 49 Lost S to 10 pounds 19 16 17 17 18 22 Lost 11 to 20 pounds 13 15 14 11 9 15 Lost more than 20 pounds 13 20 18 16 6 13 Weight Change Intentional 12 19 11 9 9 14 Unintentional 88 81 89 91 91 87 =Significantly higher than all numbers = Significantly lower than all numbers = Significantly higher than lowest number Q32 - Since you began treatment, have you: Q33 - Was this weight gain or loss: 29 EFTA01192198 One-half of the patients who have experiencing less energy since treatment began have lost weight. About nine out of ten said their weight change was unintentional. African Americans are the most likely to have gained weight, but most of them are still more likely to have lost weight (31% vs. 45%, respectively). Base sizes: Total Energy Level More Same Less White Ethnicity Black Others (1198) (253) % (892) % (954) % (111) % (132) % Gained 24 28 23 24 31 19 Gained more than 20 pounds 4 3 4 4 5 3 Gained 11 to 20 pounds 6 7 6 6 4 7 Gained 5 to 10 pounds 14 17 13 13 22 10 Stayed about the same weight 31 42 28 31 25 33 Lost 45 31 49 45 45 48 Lost 5 to 10 pounds 19 16 20 18 21 25 Lost 11 to 20 pounds 13 8 14 14 9 12 Lost more than 20 pounds 13 6 15 14 15 11 Weight Change _ Intentional 12 24 9 13 5 9 Unintentional 88 76 91 87 95 91 =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q32 - Since you began treatment, have you: Q33 - Was this weight gain or loss: 30 EFTA01192199 Exercise, Energy and Work Six out of ten patients are exercising less often, not surprising since the majority (78%) have less energy. Most patients are also working less often. Two-thirds of the Lung patients are exercising less often; most of them (82%) have less energy. Total GI Lunt Type of Cancer Solid Breast Hema Base sizes: (1198) (182) (169) (343) (226) (255) Exercising More often 7 8 7 6 9 6 About the same 33 35 28 31 36 36 Less often 60 57 66 62 56 58 Energy Level More 4 7 3 1 2 6 About the same 18 19 15 18 17 20 Less 78 74 82 81 80 74 Working More often 2 4 0 2 1 2 About the same 31 27 33 24 38 30 Less often 67 70 67 75 60 68 =Significantly higher than all numbers =Significantly lower than all numbers = Significantly higher than lowest number Q34 - Since you began treatment, are you exercising: Q35 - Since you began treatment, do you have: Q36 - Since you began treatment, are you working: 31 EFTA01192200 Among those with less energy, about seven out of ten are exercising less often and about three-fourths of them are working less often. About nine out of ten patients who have unintentionally lost weight have less energy. Base sizes: Exercising Total Energy Level More Same Less Weight Change (unintentional) Gain Same Loss (1198) (253) (892) (215) (354) (456) More often 7 16 4 7 7 5 About the same 33 54 27 29 39 29 Less often 60 30 69 64 54 66 Energy Level More 4 17 0 3 3 2 About the same 18 83 0 19 26 11 Less 78 0 100 78 71 87 Working More often 2 7 1 2 1 1 About the same 31 57 24 28 44 22 Less often 67 36 76 70 56 77 Although the majority of patients (78%) have less energy, patients who are eating less often and drinking less often (90%+) have significantly less energy, are working less often (80%+), and exercising less often (72%+) vs. those eating/drinking the same or more since beginning treatment. =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q34 - Since you began treatment, are you exercising: Q35 - Since you began treatment, do you have: Q36 - Since you began treatment, are you working: 32 EFTA01192201 Food Shopping and Preparation Two-thirds of the patients indicate that they are able to shop for food. Only 10% said they are not able to prepare meals at all. However, only about one-half of them consider themselves to be the primary food preparer. About 12-16% of Lung, Solid and Hema patients indicate they are not able to shop for food and/or not able to prepare meals. Not surprisingly, the women Breast patients are more likely to be the primary food preparer and shop for food. Base sizes: Ability to Shop for Food Total GI (182) Type Luna (169) of Cancer SolidSolid Breast Hema (1198) (343) (226) (255) Yes 67 63 64 66 74 66 Sometimes 23 29 23 23 21 21 No 10 9 14 12 6 14 Ability to Prepare Meals Yes 59 57 54 56 63 60 Sometimes 31 36 30 32 35 26 No 10 7 16 12 3 15 Primary Food Preparer Self 53 46 49 52 72 49 Spouse/significant other 33 43 35 34 16 39 Family member(s) 10 8 14 9 9 10 Caregiver 1 2 0 2 1 1 Friend(s) 1 1 1 1 2 0 =Significantly higher than all numbers Central dining or delivery 1 1 2 2 1 1 Significantly higher than lowest number =Significantly lower than all numbers Q37 - Are you able to shop for food? Q38 - Are you able to prepare meals for yourself and/or your family? Q39 - Who is the primary food preparer at home? 3:3 EFTA01192202 Those 75+ years and "other" ethnicity are the least likely to shop for food or prepare meals. African Americans are the least likely to have a spouse or significant other helping with food preparation, but one-fifth of them have another family member serving as the primary food preparer. Base sizes: Ability to Shop for Food Total Age 18-74 75+ White Ethnicity Black Others (1198) 2i (1043) 2f a (151) 2f a (954) if (111) if (132) if Yes 67 67 66 69 64 55 Sometimes 23 24 17 21 32 26 No 10 9 17 10 4 19 Ability to Prepare Meals Yes 59 59 56 61 56 52 Sometimes 31 32 25 30 39 32 No 10 9 19 10 5 17 Primary Food Prepare r Self 53 54 48 54 61 45 Spouse/significant other 33 33 39 36 17 30 Family member(s) 10 10 9 8 21 19 Friend(s) 1 1 1 1 0 1 Caregiver 1 1 1 1 0 4 Central dining or delivery 1 1 3 1 1 2 =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q37 - Are you able to shop for food? Q38 - Are you able to prepare meals for yourself and/or your family? Q39 - Who is the primary food preparer at home? 34 EFTA01192203 Those with less energy and unintentional weight loss are the least likely to shop for food and prepare meals. Total Energy Level More/Same Less Weight Change (unintentional) Gain Same Loss Base sizes: (1198) (253) (892) (215) (354) (456) Ability to Shop for Food Yes 67 83 63 70 74 59 _A Sometimes 23 12 26 22 20 26 No 10 6 12 8 7 is Ability to Prepare Meals Yes 59 80 53 66 66 118.1 Sometimes 31 14 36 29 28 37 No 10 6 11 5 6 16 Primary Food Preparer Self 53 55 52 57 54 49 Spouse/significant other 33 34 34 30 34 36 Family member(s) 10 8 11 9 9 12 Friend(s) 1 1 1 1 1 0 Caregiver 1 1 2 1 1 2 Central dining or delivery 1 1 1 3 1 0 =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q37 - Are you able to shop for food? Q38 - Are you able to prepare meals for yourself and/or your family? Q39 - Who is the primary food preparer at home? 35 EFTA01192204 Experience with Food and Beverages since beginning Treatment EFTA01192205 Appetite and Eating Habits Since beginning treatment, more patients have experienced a decreased appetite and are eating less often. Decreases in appetite are most prevalent among GI and Lung patients. However, about the same number of GI (and Hema) patients are eating more often as are eating less often. Base sizes: Appetite Total GI (182) S Lung (169) N Type of Cancer Solid Breast Hema (1198) N (343) % (226) S (255) N Increased 15 13 16 15 19 16 Stayed about the same 45 41 36 43 45 55 Decreased 39 47 48 42 36 29 Eating More often 22 27 20 19 22 21 About the same 49 43 44 46 47 58 Less often 30 31 36 35 31 20 =Significantly higher than all numbers = Significantly lower than all numbers = Significantly higher than lowest number O13 - Since you began treatment, has your appetite most often: Q14 - Since you began treatment, are you eating: 37 EFTA01192206 Compared to others, patients experiencing less energy since they began treatment and those who have lost weight, unintentionally, are significantly more likely to have a decrease in appetite and are eating significantly less often. Base sizes: Appetite Total Energy Level More/Same Less Weight Change (unintentional) Gain Same Loss (1198) (253) (892) (215) (354) (456) Increased 15 22 13 40 9 6 Stayed about the same 45 65 40 47 67 28 Decreased 39 13 47 13 24 67 Eating More often 22 28 20 36 20 14 About the same 49 64 45 54 64 34 Less often 30 8 36 10 16 52 =Significantly highest or higher than both numbers =Significantly higher than lowest number O13 - Since you began treatment, has your appetite most often: O14 - Since you began treatment, are you eating: 38 EFTA01192207 Desire for Beverages and Beverage Habits Since beginning treatment, their desire for fluids has increased and almost one-half of patients are drinking beverages more often. The desire for beverages and consumption has increased the most among Breast and Hema patients. Base sizes: Desire for Beverages Total GI (182) Lung (169) Type of Cancer SolidSolid Breast Hema (1198) (343) (226) (255) Increased 31 23 25 30 38 36 Stayed about the same 54 56 59 50 51 57 Decreased 16 22 17 20 11 8 Drinking Beverages / Fluids More often 49 41 45 45 57 58 About the same 40 45 43 42 36 36 Less often 11 15 12 13 7 6 =Significantly higher than all numbers = Significantly lower than all numbers = Significantly higher than lowest number C115 - Since you began treatment, has your desire for beverages (fluids): C116 - Since you began treatment, are you drinking beverages (fluids): 39 EFTA01192208 Although about three out of ten patients have an increased desire for fluids, a sizeable number of patients who have experienced less energy since they began treatment and patients who have lost weight, unintentionally, have a decreased desire for beverages than others. Base sizes: Desire for Beverages Total Energy Level More/Same Less Weight Change (unintentional) Gain Same Loss (1198) (253) (892) (215) (354) (456) Increased 31 29 31 36 28 30 Stayed about the same 54 65 50 54 61 46 Decreased 16 6 19 10 11 24 Drinking Beverages / Fluids More often 49 45 50 58 51 45 About the same 40 50 37 36 44 38 Less often 11 4 13 7 6 17 = Significantly highest or higher than both numbers = Significantly higher than lowest number O15 - Since you began treatment, has your desire for beverages (fluids): O16 - Since you began treatment, are you drinking beverages (fluids): 40 EFTA01192209 Alcoholic Beverage Consumption Among those who consumed alcoholic beverages before treatment, the majority of them are now drinking alcoholic beverages less often since they began treatment. GI and Solid patients are most notably drinking alcoholic beverages less often. Base sizes: Drinking Alcoholic Beverages Total GI (182) Lune (169) Type of Cancer SolidSolid Breast Hema (1198) (343) (226) (255) More often 2 2 2 2 1 1 About the same 20 14 18 15 25 27 Less often 78 85 81 83 74 72 Patients experiencing less energy and losing weight are drinking alcoholic beverages less often (>80%). =Significantly higher than all numbers = Significantly lower than all numbers = Significantly higher than lowest number O17 - Since you began treatment, are you drinking alcoholic beverages: 11 EFTA01192210 Dietary Changes About one-half of the patients are drinking/eating similarly to how they were before treatment. Most of them have no preference in terms of food temperature. Breast and Hema patients are the most likely to be drinking/eating the same. Base sizes: Total GI (182) % Lung (169) % Type of Cancer Solid Breast Hema (1198) (343) % (226) % (255) % Normal / no changes 51 46 49 47 57 55 Changes-Net 49 54 51 53 43 45 Solids 39 41 40 38 34 42 Liquids 36 41 37 39 33 33 Liquids Only 2 1 1 3 1 1 Soft solids 25 31 28 29 20 17 Soft solids and liquids only 5 8 7 7 6 2 Nutritional supplements 12 19 14 13 6 7 Tube feedings 2 3 3 6 1 =Significantly higher than all numbers =Significantly lower than all numbers = Significantly higher than lowest number O18 - Which types of foods/beverages are you drinking/eating? Multiple answers accepted. 42 EFTA01192211 Consistent to other results, patients experiencing less energy and those losing weight are the most likely to have had dietary changes. Base sizes: Total Energy More/Same (253) Level Less Weight Change (unintentional) Gain Same Loss (1198) (892) (215) (354) (456) Normal / no changes 51 60 49 56 60 43 Changes- Net 49 40 51 44 40 57 Solids 39 35 40 39 34 42 Liquids 36 29 MI 38 31 31 42 Liquids Only 2 1 2 0 2 3 Soft solids 25 18 II 27 17 19 31 Soft solids and liquids only 5 3 6 4 3 8 Nutritional supplements 12 8 12 7 8 17 Tube feedings 2 1 3 1 1 4 =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q18 - Which types of foods/beverages are you drinking/eating? Multiple answers accepted. 43 EFTA01192212 Taste Sensitivity About four out of ten patients have increased taste sensitivities, most often to metallic, salty or sweet items. About eight out of ten patients do not have any decreased taste sensitivities. Hema patients are the least likely to have increased taste sensitivities. One-fourth of Solid patients have decreased taste sensitivities, most often to sweet and salty items. Total GI Luna Type of Cancer SolidSolid Breast Hema Base sizes: (1198) (182) (169) (343) (226) (255) 2f a Increased Taste Sensitivity Metallic 19 24 16 23 21 13 Salty 15 15 14 19 15 13 Sweet 14 14 12 15 16 14 Bitter 10 11 12 9 11 9 Sour 8 11 8 10 8 5 None of the above 59 53 61 54 58 64 Decreased Taste Sensitivity Sweet 10 6 8 14 7 10 Salty 9 8 8 10 11 9 Bitter S 3 4 8 6 4 Sour S 3 3 7 6 5 None of the above 82 87 80 76 81 83 =Significantly higher than all numbers =Significantly lower than all numbers = Significantly higher than lowest number Q20 - Which of the following, if any, are you having increased taste sensitivity to? Multiple answers accepted. Q21 - Which of the following, if any, are you having decreased taste sensitivity to? Multiple answers accepted. 44 EFTA01192213 Older patients are less likely than others to have increased taste sensitivities. Some differences are noted by ethnicity. Base sizes: Increased Taste Sensitivity Total Age 18-74 75+ White Ethnicity Black Others (1198) (1043) (151) (954) (111) (132) Bitter 10 10 6 10 7 7 Metallic 19 21 8 21 15 13 Salty 15 16 10 13 25 20 Sour 8 8 3 7 6 10 Sweet 14 15 8 13 22 14 None of the above 59 56 75 59 52 58 Decreased Taste Sensitivity Bitter 5 5 3 4 7 7 Salty 9 9 8 8 8 15 Sour 5 5 4 4 11 8 Sweet 10 11 4 9 12 18 None of the above 82 81 84 84 75 70 =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q20 - Which of the following, if any, are you having increased taste sensitivity to? Multiple answers accepted. Q21 - Which of the following, if any, are you having decreased taste sensitivity to? Multiple answers accepted. 45 EFTA01192214 Patients experiencing less energy and those losing weight are the most likely to have increased and/or decreased taste sensitivities. About one-half of them have increased taste sensitivities; about one-fifth have decreased taste sensitivities. Total Energy Level More/Same Less Weight Change (unintentional) Gain Same Loss Base sizes: (1198) (253) (892) (215) (354) (456) Increased Taste Sensitivity Metallic 19 13 21 20 16 23 Salty 15 8 17 14 12 18 Sweet 14 9 15 16 11 16 Bitter 10 5 11 9 9 11 Sour 8 4 9 7 7 8 None of the above 59 72 55 63 64 52 Decreased Taste Sensitivity Sweet 10 7 11 10 7 12 Salty 9 4 11 10 9 9 Bitter 5 2 6 5 4 6 Sour 5 2 6 4 3 7 None of the above 82 90 79 81 86 79 =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q20 - Which of the following, if any, are you having increased taste sensitivity to? Multiple answers accepted. Q21 - Which of the following, if any, are you having decreased taste sensitivity to? Multiple answers accepted. 46 EFTA01192215 Patients who have eating and drinking habits that are the same as prior to treatment are the least likely to be experiencing taste sensitivities. Increased taste sensitivities are most prevalent among those with reduced consumption. Base sizes: Increased Taste Sensitivity Total Eating Behavior More Same Less Drinking Behavior More Same Less (1198) (251) (565) (349) (570) (469) (126) Metallic 19 24 13 26 21 • 15 30 Salty 15 17 10 22 16 11 24 Sweet 14 16 9 21 16 11a 18 Bitter 10 14 6 13 11 7 15 Sour 8 8 4 13 8 6 16 None of the above 59 55 70 44 56 66 44 Decreased Taste Sensitivity Sweet 10 13 6 14 11 7 14 Salty 9 9 7 13 11 6 12 Bitter 5 3 4 7 4 4 6 Sour 5 4 3 9 5 4 7 None of the above 82 79 88 72 80 86 75 =Significantly highest or higher than both numbers =Significantly lowest or lower than both numbers = Significantly higher than lowest number Q20 - Which of the following, if any, are you having increased taste sensitivity to? Multiple answers accepted. Q21 - Which