Appendix – Patient and HCP Questionnaires
Patient questionnaireHave you ever been diagnosed with any of the following medical conditions by a healthcare professional? (Please select all that apply.).
1. Rheumatoid Arthritis
2. Crohn’s disease
3. Diabetes
4. Allergies
5. Cancer
6. Multiple Sclerosis
7. Cholesterol problems (High/Low)
8. Thyroid condition
9. CHF (Congestive Heart Failure)
10. High blood pressure
11. None of the above
12. Decline to answer
2. What month and year were you diagnosed with cancer? Please enter the month and the year to the best of your recollection.
|__|__| month |__|__|__|__| year
Patient questionnaire (cont’d)
3. With what type of cancer were you most recently diagnosed? (Select one.)___ anal cancer
___ bladder cancer
___ blood cancer [TERMINATE]
___ bone/sarcoma
___ brain cancer
___ breast cancer
___ cervical cancer [do not display for male respondents]
___ colon cancer
___ esophageal cancer
___ head and neck cancer (tongue, tonsil, etc.)
___ Hodgkins Disease [TERMINATE]
___ intestine cancer
___ leukemia [TERMINATE]
___ liver cancer
___ lung cancer
___ lymphoma [TERMINATE]
___ melanoma skin cancer ]
___ myelodysplastic syndrome (MDS) [TERMINATE]
___ myeloma [TERMINATE]
___ non-melanoma skin cancer
___ ovarian cancer [do not display for male respondents]
___ pancreatic cancer
___ prostate cancer [do not display for female respondents]
___ rectal cancer
___ renal (kidney) cancer
___ stomach cancer
___ testicular cancer [do not display for female respondents]
___ thyroid cancer
___ uterine cancer [do not display for male respondents]
___ other [TERMINATE])
Patient questionnaire (cont’d)
4. Were you told by your doctor that the treatment you are currently receiving or have received most recently was for cancer that spread to other parts of your body (metastatic or stage 4 cancer)?
___ yes
___ no
5. Which of the following treatments have you had or are you currently undergoing for cancer? (Please select all that apply.)
___ chemotherapy
___ radiation therapy
___ hormonal therapy
___ targeted therapy or biologic therapy (such as such as Avastin®, Erbitux®, Tarceva®, Vectibix®, Herceptin®)
____ bone marrow or stem cell transplant [TERMINATE]
___ none of the above (terminate)
[Either “chemotherapy” OR “targeted therapy or biologic therapy” MUST be selected. TERMINATE if “bone marrow or stem cell transplant” selected, even if in combination with other acceptable treatments.]6. Have you been hospitalized within the past 30 days? (Select one.)
___ yes
___ no
7. Have you had surgery in the last 6 months? (Select one.)
___ no I have not had surgery in the last 6 months
___ yes I have had surgery related to my cancer in the last 6 months
___ yes I have had surgery but NOT related to my cancer in the last 6 months
8. Which of the following forms of cancer treatment have you most recently received? (Please select all that apply.)
___ intravenous (IV) chemotherapy
___ oral chemotherapy (pill)
___ targeted therapy (such as Avastin®, Erbitux®, Tarceva®, Vectibix®, Herceptin®)
Patient questionnaire (cont’d)
9. When did you complete your most recent chemotherapy or targeted/biologic therapy (intravenous, and/or pill, tablet)? (Select one.)
___ currently being treated
___ 0-3 months ago
___ 4-6 months ago
___ 7-9 months ago
___ 10-12 months ago
___ 1 to 2 years ago [TERMINATE]
___ over 2 years ago [TERMINATE]
10. How long were you on chemotherapy and/or targeted/biologic therapy treatments?
___ less than 1 month [TERMINATE]
___ 1-2 months [TERMINATE]
___ more than 2 months
99. Please indicate which statement best describes your activity level while on chemotherapy at its worst: (Select one.)
___ Normal activity, without symptoms
___ Some symptoms, but do not require bed rest during waking day
___ Require bed rest for less than 50% of waking day
___ Require bed rest for more than 50% of waking day
___ Unable to get out of bed
100a. During your office visits, please indicate who you talk/talked with about your symptoms related to your chemotherapy treatment. (Select one.)
___ (a) my doctor only
___ (b) a nurse/nurse practitioner at the doctor’s office only
___ (c) both my doctor and my nurse/nurse practitioner
___ (d) neither my doctor nor my nurse/nurse practitioner
100b. [If a or c in q100a] How often do you, or did you, talk to your doctor about your symptoms related to your chemotherapy treatment? (Select one.)
___ at every clinic visit
___ occasionally
___ rarely
Patient questionnaire (cont’d)
100c. [If b or c in q100a] How often do you, or did you, talk to your nurse/nurse practitioner about your symptoms related to your chemotherapy treatment? (Select one.)___ at every clinic visit
___ occasionally
___ rarely
100d. [if a, b or c in 100a] In addition to office visits, did you also speak to your doctor or nurse/nurse practitioner in between visits via phone or email regarding your symptoms from chemotherapy treatment? (Select one)
___ yes
___ no
101. During your cancer treatment with chemotherapy, please indicate the number that reflects the severity of your pain at its worst, if any, using a scale from 0 to 10 where “0” is no pain and “10” is the most severe pain.
Note to programmer: please create 11 point scale with 0= no pain; 5 = moderate pain; 10=severe pain
[if 103=”0” skip to q201]
102. [Ask if q101 is > 0.] In general, how frequently do you or did you experience pain related to your treatment with chemotherapy at its worst? (Select one.)
___ every day
___ 4 to 6 days per week
___ 2 to 4 days per week
___ once a week
___ less than 4 days per month
103. [Ask if q101 is > 0.] Did you tell your doctor and/or nurse/nurse practitioner that you experienced pain related to your treatment with chemotherapy? (Select one.)
___ yes
___ no
___ not sure / don’t remember
104. [Ask if “yes” to q103] Who did you tell? (Select one.)
___ only my doctor
___ only my nurse/nurse practitioner
___ both my doctor and my nurse/nurse practitioner
Patient questionnaire (cont’d)
105. [Ask if “yes” to q103.] Did your doctor and/or nurse/nurse practitioner recommend or prescribe a medication to relieve your pain? (Select one.)___ yes
___ no
___ not sure / don’t remember
106. [Ask if “yes” to q105] Who specifically recommended or prescribed a pain medication for you? (Select one.)
___ only my doctor
___ only my nurse practitioner
___ both my doctor and my nurse practitioner
107. [Ask if “yes” to q105] How well did the medication your doctor and/or nurse/nurse practitioner prescribed relieve your pain? (Select one.)
___ completely relieved my pain
___ relieved most of my pain
___ relieved some of my pain
___ had no effect
___ I did not use the medication recommended or prescribed.
108. [Ask if “had no effect” selected in q107.] If the treatment did not adequately relieve your pain, did you tell your doctor and/or nurse/nurse practitioner? (Select one.)
___ yes
___ no
109. [Ask if yes to q108] Who did you tell?
___ only my doctor
___ only my nurse/ nurse practitioner
___ both my doctor and my nurse/nurse practitioner
Patient questionnaire (cont’d)
110 [Ask if “no” to q108.] What prevented you from telling your doctor, nurse or nurse/practitioner that the pain medication did not adequately relieve your pain? (Select all that apply.)
___ pain is an expected symptom to be endured
___ the pain is/was manageable
___ don’t want to trouble the doctor/nurse/nurse practitioner
___ scared or intimidated to tell the doctor
___ scared or intimidated to tell the nurse/nurse practitioner
___ not able to contact the doctor
___ forgot to tell the doctor
___ I asked someone else for advice
___ none of the above
111. [Ask if “no” / “not sure” to q103.] Did you want to tell your doctor that you experienced pain related to your treatment with chemotherapy, but felt that you couldn’t? (Select one.)
___ yes
___ no
112. [Ask if “no” / “not sure” to q103] Did you want to tell your nurse/nurse practitioner that you experienced pain related to your treatment with chemotherapy, but felt that you couldn’t? (Select one.)
___ yes
___ no
The next set of questions will concern fatigue associated with cancer treatment. For purposes of this survey, we will define fatigue as “an unusual and persistent feeling of tiredness or lack of energy.” Please keep this definition in mind as you answer these questions.
201. During your cancer treatment with chemotherapy, please indicate the number that reflects the severity of your fatigue at its worst, if any, using a scale from 0 to 10 where “0” is no fatigue and “10” is the most severe fatigue.
[if 201= “0” skip to q301]
Patient questionnaire (cont’d)
202. [Ask if q201 is > 0.] In general, how frequently do you or did you experience fatigue during your treatment with chemotherapy at its worst? (Select one.)
___ every day
___ 4 to 6 days per week
___ 2 to 4 days per week
___ once a week
___ less than 4 days per month
203. [Ask if q201 is > 0.] Did you tell your doctor and/or nurse/nurse practitioner that you experienced fatigue during your treatment with chemotherapy? (Select one.)
___ yes
___ no
___ not sure / don’t remember
204. [Ask if “yes” to q203] Who did you tell?
___ only my doctor
___ only my nurse/nurse practitioner
___ both my doctor and my nurse/nurse practitioner
205. [Ask if “yes” to q203.] Did your doctor and/or nurse/nurse practitioner recommend or prescribe a medication to relieve your fatigue? (Select one.)
___ yes
___ no
___ not sure / don’t remember
206. [Ask if “yes” to q205] Who specifically recommended or prescribed fatigue medication for you?
___ only my doctor
___ only my nurse practitioner
___ both my doctor and my nurse practitioner
Patient questionnaire (cont’d)
207. [Ask if “yes” to q205] How well did the medication your doctor and/or nurse/nurse practitioner prescribed relieve your fatigue? (Select one.)
___ completely relieved my fatigue
___ relieved most of my fatigue
___ relieved some of my fatigue
___ had no effect
___ I did not use the medication recommended or prescribed.
208. [Ask if “had no effect” selected in q207.] If the treatment did not adequately relieve your fatigue, did you tell your doctor and/or nurse/nurse practitioner? (Select one.)
___ yes
___ no
209. [Ask if “yes” to q208] Who did you tell?
___ only my doctor
___ only my nurse/ nurse practitioner
___ both my doctor and my nurse/nurse practitioner
210. [Ask if “no” to q208.] What prevented you from telling your doctor, nurse or nurse/practitioner that the fatigue medication did not adequately relieve your fatigue? (Select all that apply.)
___ fatigue is an expected symptom to be endured
___ the fatigue is/was manageable
___ don’t want to trouble the doctor/nurse/nurse practitioner
___ scared or intimidated to tell the doctor
___ scared or intimidated to tell the nurse/nurse practitioner
___ not able to contact the doctor
___ forgot to tell the doctor
___ I asked someone else for advice
___ none of the above
Patient questionnaire (cont’d)
211. [Ask if “no”, not sure to q203.] Did you want to tell your doctor that you experienced fatigue during your treatment with chemotherapy, but felt that you couldn’t? (Select one.)___ yes
___ no
212. [Ask if “no”, not sure to q203] Did you want to tell your nurse/nurse practitioner that you experienced fatigue during your treatment with chemotherapy, but felt that you couldn’t? (Select one.)
___ yes
___ no
301a. To what extent did pain affect these aspects of your daily life during your chemotherapy treatment at its worst? (Enter ratings.)
To what extent did Pain affect your… / Did not affect at all / Affected slightly / Affected somewhat / Affected a great deal / Affected completelyability to work (if you had to even if you don’t) / __ / __ / __ / __ / __
physical well-being / __ / __ / __ / __ / __
ability to enjoy life at the moment / __ / __ / __ / __ / __
emotional well-being / __ / __ / __ / __ / __
ability to be intimate with your partner / __ / __ / __ / __ / __
ability to take care of your family / __ / __ / __ / __ / __
relationships with family / __ / __ / __ / __ / __
concerns about mortality and survival / __ / __ / __ / __ / __
relationships with friends / __ / __ / __ / __ / __
Patient questionnaire (cont’d)
301b. To what extent did fatigue affect these aspects of your daily life during your chemotherapy treatment at its worst? (Enter ratings.)
To what extent did Fatigue affect your… / Did not affect at all / Affected slightly / Affected somewhat / Affected a great deal / Affected completelyability to work (if you had to even if you don’t) / __ / __ / __ / __ / __
physical well-being / __ / __ / __ / __ / __
ability to enjoy life at the moment / __ / __ / __ / __ / __
emotional well-being / __ / __ / __ / __ / __
ability to be intimate with your partner / __ / __ / __ / __ / __
ability to take care of your family / __ / __ / __ / __ / __
relationships with family / __ / __ / __ / __ / __
concerns about mortality and survival / __ / __ / __ / __ / __
relationships with friends / __ / __ / __ / __ / __
302. Overall, when it comes to managing your symptoms related to cancer treatment, do you think it is …? (Select one.)
___ more important to reduce or relieve your symptoms of pain
___ more important to reduce or relieve your symptoms of fatigue
___ equally important to reduce or relieve your symptoms of pain and fatigue
303. During your cancer treatment with chemotherapy, which affected your daily life more: pain or fatigue? (Select one.)
___ pain affected my daily life more than fatigue
___ fatigue affected my daily life more than pain
___ pain and fatigue each affected my daily life about the same amount
Patient questionnaire (cont’d)
401. Please indicate what other ongoing health problems you are/were also being treated for while receiving chemotherapy for your cancer. (Please select all that apply.)___ COPD (Chronic obstructive pulmonary disease)
___ Diabetes mellitus (type 1 or type 2 diabetes)
___ CHF (Congestive Heart Failure)
___ ESRD (End-stage renal disease)
___ PVD (peripheral vascular disease)
___ MI (Myocardial infarction)
___ ESLD (End-stage liver disease)
___ Depression
___ Anxiety
___ Lupus
___ Rheumatoid Arthritis
___ Osteoarthritis
___ none of these
501. Please rate the following statements as they apply to you during the past 7 days, including today.
Not at all / A little bit / Somewhat / Quite a bit / Very muchI have pain / __ / __ / __ / __ / __
I have a lack of energy / __ / __ / __ / __ / __
I have nausea / __ / __ / __ / __ / __
I am sleeping well / __ / __ / __ / __ / __
I worry that my condition will get worse / __ / __ / __ / __ / __
I am able to enjoy life / __ / __ / __ / __ / __
I am content with the quality of my life right now / __ / __ / __ / __ / __
Patient questionnaire (cont’d)
601. Which of the following best describes your race? (Select one.)___White
___Black or African American
___American Indian or Alaska Native
___Asian - Asian Indian
___Asian - Chinese
___Asian - Filipino
___Asian - Japanese
___Asian - Korean
___Asian - Vietnamese
___Asian - Other
___Pacific Islander - Native Hawaiian
___Pacific Islander - Guamanian
___Pacific Islander - Samoan
___Pacific Islander - Other Pacific Islander
___Some other race
___Prefer not to answer
602. Are you of Hispanic, Latino or Spanish origin? (Select one.)
___ No, not of Hispanic, Latino or Spanish origin
___ Yes, Mexican, Mexican American, Chicano
___ Yes, Cuban
___ Yes, another Hispanic, Latino or Spanish origin - Argentina
___ Yes, another Hispanic, Latino or Spanish origin - Colombia
___ Yes, another Hispanic, Latino or Spanish origin - Ecuador
___ Yes, another Hispanic, Latino or Spanish origin - El Salvador
___ Yes, another Hispanic, Latino or Spanish origin - Guatemala
___ Yes, another Hispanic, Latino or Spanish origin - Nicaragua
___ Yes, another Hispanic, Latino or Spanish origin - Panama
___ Yes, another Hispanic, Latino or Spanish origin - Peru
___ Yes, another Hispanic, Latino or Spanish origin - Spain
___ Yes, another Hispanic, Latino or Spanish origin - Venezuela
___ Yes, another Hispanic, Latino or Spanish origin - Other Country
___ Prefer not to answer
Patient questionnaire (cont’d)
603. What is your annual household income before taxes?1. Less than $15,000
2. $15,000 to $19,999
3. $20,000 to $24,999
4. $25,000 to $29,999
5. $30,000 to $34,999
6. $35,000 to $39,999
7. $40,000 to $44,999
8. $45,000 to $49,999
9. $50,000 to $59,999
10. $60,000 to $74,999
11. $75,000 to $84,999
12. $85,000 to $99,999
13. $100,000 to $124,999
14. $125,000 to $149,999
15. $150,000 to $174,999
16. $175,000 to $199,999
17. $200,000 and above
18. Prefer not to answer
604. What is your highest education level? (Select one).
___ Elementary School
___ Middle School (4th Grade to 8th Grade)
___ Completed some high school
___ High school graduate
___ Other post high school vocational training
___ Completed some college
___ Associates Degree
___ Bachelor’s degree
___ Completed some postgraduate
___ Master’s degree
___ Doctorate degree
Patient questionnaire (cont’d)
606. Which one of the following best describes your employment status? (Select one.)___ Employed full time
___ Employed part time
___ Self-employed
___ Not employed, but looking for work
___ Not employed and not looking for work
___ Not employed, unable to work due to a disability or illness
___ Retired
___ Student
___ Stay-at-home spouse or partner/housewife/husband
608. What is your current living situation? (Select one.)
___ I live at home without a caregiver (spouse, family/friend, hired help)
___ I live at home with a caregiver (spouse, family/friend, hired help)
___ I live in an assisted living facility
___ I live in a nursing home facility
___ other
609. Are you currently enrolled in hospice or similar program?
___ yes
___ no
HCP questionnaire
Physician-specific questions
1. What is your primary specialty? (Select one.)___ medical oncologist
___ hematologist-oncologist
___ gynecological oncologist
___ hematologist [TERMINATE]
___ radiation oncologist [TERMINATE]
___ surgical oncologist [TERMINATE]
___ other [TERMINATE]
2. Are you board-certified or board-eligible in your primary specialty? (Select one.)
___ yes, board-certified
___ yes, board-eligible
___ no, not board-certified or board-eligible [TERMINATE.]
3. How many years have you been in practice since completing your residency? (Enter number of years. If less than 1, enter 0. Please enter a whole number; do not use decimals.)
___ number of years in practice [ Terminate if < 2.]
Nurse-specific questions
1. Are you a…? (Select one.)
___ registered nurse (RN)
___ nurse practitioner (NP)
___ licensed practical nurse (LPN) [TERMINATE]
___ other [TERMINATE]
2. What is the specialty in which you work? (Select one.)
___ medical oncology
___ hematology-oncology
___ hematology [TERMINATE]
___radiation oncology [TERMINATE]
___ surgical oncology [TERMINATE]
___ other [TERMINATE]
Nurse-specific questions (cont’d)
3. For how many years have you worked as a nurse/nurse practitioner providing patient care for oncology patients requiring chemotherapy infusion? (Enter number of years. If less than 1 year, enter 0. Please enter a whole number; do not use decimals.)
___ years in oncology patient care [Terminate if < 2 years.]
Questions common to both physicians and nurses (HCP questionnaire)
4. Approximately what percent of your work time do you spend in direct patient care? (Enter percent.)
___ % of time spent in direct patient care [Terminate if < 75%.]
5. Approximately what percent of your work time do you spend in direct patient care for adult patients with solid tumors who are being treated with chemotherapy? (Enter percent.)
___ % of time [Terminate if < 50%.]
6. Have you personally treated or cared for at least 100 patients with solid tumors receiving chemotherapy in the past two years? (Select one.)
___ yes
___ no [Terminate.]
7. In what state do you practice medicine?
[Terminate if Vermont selected.]
8. Are you currently a paid consultant for the FDA, pharmaceutical company, advertising firm, public relations firm, or marketing research firm? (Select one.)
___ yes [Terminate.]
___ no
9. Where do you see most of your solid tumor cancer patients?
___ academic or teaching hospital
___ community-based hospital
___ multiple specialty private group practice
___ single specialty group practice
___ solo practice
___ other [Terminate]
HCP questionnaire (cont’d)
10. Please tell us about your practice and the types of patients you see. Please indicate the percentage of your cancer patients with the types of cancer(s) listed below. (Total must sum to 100%)
___ lung cancer
___ breast cancer
___ colorectal cancer
___ prostate cancer
___ ovarian cancer
___ lymphoma(s)
___ leukemia(s)
___ Other
Must sum to 100%
[Terminate if either “lymphoma” or “leukemia” or “other” is ≥ 50%, or if the sum of these is ≥ 50%.]
101. How often do you discuss the following potential side effects with patients before they start a course of chemotherapy treatment for solid tumors? (Enter ratings.)
never / rarely / sometimes / very often / always
Pain / __ / __ / __ / __ / __
nausea/vomiting / __ / __ / __ / __ / __
diarrhea / __ / __ / __ / __ / __
fatigue / __ / __ / __ / __ / __
depression / __ / __ / __ / __ / __
weight loss / __ / __ / __ / __ / __
hair loss / __ / __ / __ / __ / __
HCP questionnaire (cont’d)
102. During the course of chemotherapy, which side effects from treatment do you typically document in the patient’s chart? (Select all that apply.)
___ bone pain
___ general pain
___ pain related to chemotherapy
___ nausea/vomiting
___ diarrhea
___ fatigue related to chemotherapy
___ general fatigue
___ depression
___ weight loss
___ abnormal lab values
___ none of the above
103. During the course of chemotherapy treatment, which side effects of treatment concern your patients the most? (Select all that apply.)
___ pain
___ nausea/vomiting
___ diarrhea
___ fatigue
___ depression
___ weight loss
___ hair loss
___ none of these side effects concern my patients
104. During the course of chemotherapy treatment, which side effects of treatment concern you the most? (Select all that apply.)
___ pain
___ nausea/vomiting
___ diarrhea
___ fatigue
___ depression
___ weight loss
___ hair loss
___ none of these side effects concern me
HCP questionnaire (cont’d)
105. In your experience, how often do cancer patients typically report side effects from chemotherapy treatment? (Select one.)
___ at every office visit
___ occasionally
___ rarely
106. Who do cancer patients typically report side effects from chemotherapy to? (Select one).
___ Their nurse/nurse practitioner
___ Their doctor
___ Both their nurse/nurse practitioner and doctor
107. In addition to office visits, how often do cancer patients undergoing chemotherapy also report side effects in between visits by phone or email?
___ never
___ rarely
___ occasionally
___ often
The next set of questions will concern the incidence of fatigue among cancer patients undergoing chemotherapy treatment. For purposes of this questionnaire, we will define fatigue as “a general feeling of debilitating tiredness or loss of energy.” Please keep this definition in mind as you answer these questions.
201. Of all the patients with solid tumors being treated with chemotherapy that you personally manage, what percent would you say experience fatigue related to chemotherapy? (Sum must total to 100%.)
____ % who experience fatigue related to chemotherapy
____ % who do not experience fatigue related to chemotherapy
[If “0” for “experience fatigue related to chemotherapy,” skip to Q301, “Pain” section.]
202. Of the [insert % from q201] % of your patients who experience fatigue related to chemotherapy treatment, what percent would you say you treat with a prescription medication?
___ % who are treated with a prescription medication for fatigue
HCP questionnaire (cont’d)
203. Please consider those cancer patients who report fatigue during treatment with chemotherapy. How often do most of these patients experience this symptom? (Select one.)
___ every day
___ 4 to 6 days per week
___ 2 to 4 days per week
___ once a week
___ less than 4 days per month
204. To what extent do you think cancer patients’ fatigue from chemotherapy treatment adversely affects aspects of their daily living? (Select one.)
___ does not affect at all
___ affects slightly
___ affects somewhat
___ affects a great deal
___ affects completely
205. In your opinion, how important is it for cancer patients undergoing chemotherapy treatment who have complaints of fatigue to have this symptom treated? (Select one.)
___ not important at all
___ slightly important
___ somewhat important
___ very important
___ extremely important
206. [Skip if Q202 = 0%.] Please consider your cancer patients on chemotherapy treatment who have received treatment for fatigue. On average, how successful was this treatment in relieving their fatigue? (Select one.)
___ not successful at all
___ slightly successful
___ moderately successful
___ very successful
___ completely successful
HCP questionnaire (cont’d)