Never Too Young Survey 2019

Connection to colorectal cancer:

PatientSurvivorCaregiver

The purpose of this survey is to explore perceptions of patients and survivors who were diagnosed with colorectal cancer before the age of 50 as well as caregivers of patients diagnosed before the age of 50 years old regarding priority health, social and other needs.

Participation in this study is entirely voluntary. You can choose not to participate at all, or discontinue participation and not submit the online survey.

The survey includes four main sections: demographics (e.g., age, gender, race) and lifestyle prior to diagnosis; your experience with symptoms and diagnosis; your experience in obtaining care, and your experiences during your survivorship journey.

This survey should take approximately 20-30 minutes to complete. Once you complete the questions and submit the survey, your response will be sent directly to the Colorectal Cancer Alliance Principal Investigator.

All of your responses to this survey will remain anonymous and cannot be linked to you in any way. No identifying information about you will be collected at any point during the study. The system has been determined to be sufficiently protected/secure to allow for its use by the Colorectal Cancer Alliance researchers. Once you submit your completed survey, there will be no way to withdraw your responses from the study because there is no mechanism to identify you. Study data are returned to the researcher in a digital format that does not identify individual responses. The digital, non-identifiable, data will be kept by the researcher on a password-protected computer. Aggregate, non-identifiable data will be shared with the medical community and the public to increase awareness to this important public health issue.

There are no risks associated with this study. While you will not experience any direct benefits from participation, information collected in this study may benefit others in the future by contributing to our knowledge and understanding of young-onset colorectal cancer patient experiences. This includes, but is not limited to, the challenges faced by patients and their caregivers.

If you have any questions regarding the survey or this research project in general, please contact the principal investigators, Dr. Ronit Yarden, PhD, MHSA at (202)-628-0123, Kim Newcomer at (202)-207-0252 or via email at research@ccalliance.org. If you have any questions about your rights as a research participant, please contact the Institutional Review Board (IRB at (619) 469-0108) or email@aspire-irb.com.

If you agree to participate, you are asked to fill out a survey provided below. By completing and submitting this survey, you are indicating your consent to participate in this study. There is no need for a signed consent to participate.

Demographics

What is your current age?

Marital Status:

Ethnicity:

Please specify other:

Gender:

Education:

Country:

State:

Type of residence:

Work

What was your employment status at time of diagnosis?

Did you take a leave of absence, quit a job or leave school because of diagnosis?

YesNo

Are you currently working?

YesNoPrefer not to answer

Did your employer/school help accommodate your treatment schedule?

YesNoPrefer not to answer

Lifestyle prior to cancer diagnosis

Weight (lbs) at diagnosis

Height in feet and inches

Smoking prior to diagnosis?

Average packs per week?

Drinking alcohol prior to diagnosis?

Average drinks per week:

Drinking soda prior diagnosis?

Average sodas per week?

Please rate your physical health before your cancer diagnosis:

Physical activity and exercise:

Average days per week of exercise?

If other, please specify:

On average, how many servings of vegetables (including fresh and frozen) did you eat per day?

On average, how many servings of fruit (including fresh and frozen) did you eat each day?

On average, during your normal working day, how many glasses (8 oz) of plain drinking water did you consume?

Summary

How many times have you participated in our Never Too Young annual survey, including this survey?

What is the biggest challenge you've faced as someone diagnosed under 50?

Demographics

What is your current age:

Marital Status:

Ethnicity:

Please specify other:

Gender:

Education:

Country:

State:

Type of residence:

Resource Availability

Please rate the amount of information and resources that were available to you and the patient during and after treatment.

	Sufficient	Adequate	More needed
Short term side effects
Long term side effects
Financial planning
Treatment options
Patient/nurse navigation
Transportation
Childcare

Please share information about other resources and their availability.

Caregiver Support Needs

Please rate areas you need/needed help with as a caregiver.

	Always	Often	Sometimes	Rarely	Never
Financial planning
Household chores
Patient transportation
Understanding treatment options
Healthcare decisions
Emotional exhaustion

Please rank your stress coping mechanisms. Using the numbers 1 - 11, please rank your coping mechanisms in order of use. Use 0 if the option does not apply or you prefer not answer. Use the same number twice for coping mechanisms that are used simultaneously.

Online support groups

In-person support groups

Exercise

Working

Volunteering

Mindfulness

Eating

Therapy

Drinking alcohol

Medication

Smoking

What other kinds of support would have helped you as a caregiver?

Caregivers Role Changes

The roles and responsibilities of caregivers often change as the relationship with a patient evolves. Please rate how often you felt your roles and responsibilities changed.

Please list any other role changes you experienced.

Work

What was your employment status at time of patient's diagnosis?

Was the patient unable to work due to treatment?

Did you take a leave of absence or quit a job or leave school because of your patient's diagnosis?

YesNoPrefer not to answer

Summary

How many times have you participated in our Never Too Young caregiver's survey?

Please share the biggest challenge(s) you've faced as someone caring for a patient diagnosed under 50?

Contact Information

No Symptoms	Diarrhea
Constipation	Weight Loss
Blood in stool	Rectal Bleeding
Weakness and/or Fatigue	Persistent Cramps
Bowel never feels empty	Bloating and/or Gas
Nausea and/or Vomiting	Pain
Other

Never Too Young Survey 2019

Prior to seeing a doctor, in what order did your symptoms appear? Using the numbers 1 - 12, please rank your symptoms in order of appearance. Use 0 to indicate that you did not experience this symptom. Use the same number twice for symptoms that appeared simultaneously.

Please rate your experiences below:

Please rate your experiences below.

Please rate your experiences below.

Please rate your experiences as a caregiver below.

	Always	Often	Sometimes	Rarely	Never
Childcare
Parenting
Household chores
Work
Sexuality/intimacy
Financial role changes