Our friends over at the Coleman Supportive Oncology Collaborative and UChicago Medicine want to improve the support and care they offer to adolescents and young adults, and they’d love to hear from you!
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We want to hear about cancer experiences from men and Black, indigenous, persons of color voices like yours to ensure our research represents everybody!
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The Behavioural Sciences Unit, a research group in Sydney, Australia is looking for cancer survivor consumer representatives aged 15-39 to provide feedback on some brand new study results from the AYA Global Accord international research study. Some of you may have provided input on this study in 2018 when it was first applying for funding. This global study is being led by Dr. Ursula Sansom-Daly, a psychologist and researcher whose work focuses on AYA cancer, and she is working with a team of international experts from Australia, New Zealand, USA, Canada, and the UK.
The study involved AYA healthcare professionals completing an online survey. This survey aimed to find out what an international group of healthcare professionals thought ideal end-of-life communication with adolescents and young adults with cancer should look like, and what type of training they wanted to improve their skills in this area.
The first thing we’d be seeking your help with would be commenting on the results from this survey based on your experience, via an online survey format.
Later on, there will also be an opportunity to join a teleconference with other young cancer survivors and the research team to discuss your perspectives on the research findings some more. Consumers will also have the opportunity to contribute to a publication (an academic journal article) about consumers’ views.
If you’re interested, fill out the form below and Lacuna Loft will forward your information along to the research group!
Another day, another research study looking for YOU to answer their questions and help make care better for other young adults facing cancer!
The purpose of this study is to explore how a cancer diagnosis as a young adult influences quality of life, specifically looking at factors related to work and education, such as work-related goals, in addition to factors such as mood, fatigue, cognitive health, work ability, and financial health.
Participants are eligible if they are currently between the ages of 20-44 years old and were:
• diagnosed with a hematological cancer (a leukemia or lymphoma) between the ages of 20-39;
• diagnosed within the past 5 years;
• working or in school during the time of your cancer diagnosis;
• and are no longer receiving chemotherapy or radiation.
Participation in the study involves:
1) an online survey about quality of life, work-related goals, mood, fatigue, cognitive health, work ability, and financial health (approximately 30 minutes); and
2) a phone interview (approximately 45 minutes).
Following completion of the interview, participants will receive a $50.00 Amazon gift card.
Please contact Lauren Ghazal, MS, FNP-BC at lvg220@nyu.edu if you are interested in participating.
My name is Jess and I am a PhD researcher working at Edge Hill University in Liverpool in the UK. My PhD study is investigating the psychological impact of cancer in teenagers and young adults who were diagnosed in their teenage and young adult years. Particularly, I am looking at the psychological impact in survivors who are in recent remission (received confirmation of no evidence of disease within the last 2 years). It is my hope that this will lead to the development of an intervention in order to better support teenagers and young people transitioning back to their previously held lives.
Right now, I am looking for individuals to take part in a questionnaire study looking at the psychological impact of your cancer experience. It can be completed anonymously online and should take no more than 15-20 minutes.
If you are:
then you are eligible to take part! Please follow this link to take part.
If you are unsure of anything or have any questions, please don’t hesitate to email me at popeje@edgehill.ac.uk
Lacuna Loft loves sharing research opportunities with you so today we’re passing along this fabulous study again being done between Dana-Farber Cancer Institute/Harvard Cancer Center and Kaiser Permanente to learn from patients and family members about the care that young adults (ages 18-39) with cancer receive.
Learn. Their goal is to evaluate and improve cancer care for future young cancer patients. They especially want to understand what is most important to patients when cancer treatment has not been effective. Research shows that many young adults think about this situation, even when their treatment is going well.
Improve care. Research involving this phase of a patient’s journey with cancer is currently lacking, so they believe that together, we have an opportunity to explore and improve the care that patients receive.
If you would like more information about the study and to find out if you’re eligible to participate, please contact the study project manager, Lauren Fisher at 617-632-6201 or Lauren_Fisher@dfci.harvard.edu.
1. Study participation includes a one-time telephone interview that lasts between 30-60 minutes.
2. The interviewer will ask you open-ended questions about:
– Plans for care
– Important qualities of care
– Priorities for care
3. You’ll receive a $25.00 Amazon.com gift card as a token of their immense appreciation for your participation.
Your information will remain confidential and no one will be aware of your participation except Dana Farber study staff.
If you’ve been around Lacuna Loft for any length of time, you know how we love pointing you towards new tools and new research. Today we’re letting you in on an easy and very impactful research opportunity with Fred Hutch researchers!
Many people living with cancer experience symptoms – including pain – which can last for years after cancer treatment. The best, and often only, way to assess post-treatment symptoms in survivors is by using patient-reported outcomes (PROs). PROs are questionnaire-based measures that ask patients directly about their symptoms and feelings. In this study we aim to develop PROs that are tailored to, and hence potentially meaningful for, individual patients. We are looking for adult cancer survivors with pain in the US to complete two surveys over one week.
For more information and to see if you are eligible, please go here.
Lacuna Loft loves sharing research opportunities with you so today we’re passing along a fabulous study being done between Dana-Farber Cancer Institute/Harvard Cancer Center and Kaiser Permanente to learn from patients and family members about the care that young adults (ages 18-39) with cancer receive.
Learn. Their goal is to evaluate and improve cancer care for future young cancer patients. They especially want to understand what is most important to patients when cancer treatment has not been effective. Research shows that many young adults think about this situation, even when their treatment is going well.
Improve care. Research involving this phase of a patient’s journey with cancer is currently lacking, so they believe that together, we have an opportunity to explore and improve the care that patients receive.
If you would like more information about the study and to find out if you’re eligible to participate, please contact the study project manager, Lauren Fisher at 617-632-6201 or Lauren_Fisher@dfci.harvard.edu.
1. Study participation includes a one-time telephone interview that lasts between 30-60 minutes.
2. The interviewer will ask you open-ended questions about:
– Plans for care
– Important qualities of care
– Priorities for care
3. You’ll receive a $25.00 Amazon.com gift card as a token of their immense appreciation for your participation.
Your information will remain confidential and no one will be aware of your participation except Dana Farber study staff.
Researchers at Hunter College in New York City are conducting a research study on technology-related communication around cancer-related events.
What does it involve?
You’ll be asked to complete a questionnaire about cancer-related communication and well-being. The questionnaire should last 30-45 minutes and can be taken on a computer or a cell phone. Optionally, at the end of the questionnaire you can express interest in taking part in the second part of the study which involves self-identifying a member of your social support network and participating together in a cancer-related discussion over Skype with a member of the research team.
You will have the opportunity to voluntarily provide your email address in order to enter a drawing to win 1 of 4 $25 gift cards for completing the questionnaire. If you decide to take part in the Skype part of the research study, you and your social support member will each receive $25.
Who can participate?
Young adults between the ages of 18-39 who have been diagnosed with cancer, as a young adult (at 18 or older) within the past 5 years.
How do I join?
Complete the questionnaire here.
If you would like to learn more about this study contact the study coordinator, Katie Darabos at 212-396-6675 or kdarabos@gradcenter.cuny.edu
Today we’re sharing about a study that is trying to understand young adult female cancer survivors’ experiences related to their fertility and family-building after treatment — the care and counseling they receive post-treatment, unmet needs, and barriers to support. The researchers are going to take what they learn from this study to build a decision aid and planning tool (website) to help young women think through the decisions they face and plan ahead – medically, psychologically, and financially.
Share your thoughts and feelings about fertility and building a family after cancer. Researchers are trying to understand how to improve cancer care to make sure all patients receive the information and support they need to make decisions and prepare for the future.
This study is funded by the National Cancer Institute.
P.S. Total aside, but not really: the old board game LIFE is where the image comes from. We need to get some gender diversity up in there! How about a car with all pink? Or all blue? 🙂
