Table 1. Details of data sources that met the study inclusion criteria and were found during the exploratory analysis.
| Source | Title |
|---|---|
| blog.dana-farber | Putting College – and Field Hockey – on Hold for a Bone... |
| blog.dana-farber | Making the Best of Things In The Hospital - Blog |
| blog.dana-farber | Feeling Lucky in an Unlucky Situation | Dana-Farber Cancer... |
| blog.dana-farber | Battling Cancer: Restructuring and Enjoying Your New Life |
| blog.dana-farber | Stem Cell Transplant Gives MDSa Patient a Second Chance at... |
| bonemarrowtransplantexperience.wordpress | Bone Marrow Transplant: My Experiences with MDS and AMLb |
| cancer.osu | Patient Story: Mark Althouse | OSUCCC – James |
| childrenscancer | Joseph’s Story: Surviving Myelodysplastic Syndrome (MDS) |
| csn.cancer | myelodysplastic - Cancer Survivors Network |
| emmafightsmds.wordpress | Emma’s fight against MDS – My battle against the blood... |
| forum.bloodcancer | Anybody here have Myelodysplastic Disorder? |
| mdandersontlc.libguides | Patient Stories - Leukemia and Myelodysplastic Syndromes... |
| mdspatientsupport | MDS Patient Stories |
| myelomabeacon | Treatment-related myelodysplastic syndromes (MDS) |
| parkway.chop | Secondary Myelodysplastic Syndrome (MDS): Zamiyha’s Story |
| patientworthy | Living with MDS: Ryan’s Story Part 1 - Patient Worthy |
| patientworthy | Living with MDS: Ryan’s Story Part 2 - Patient Worthy |
| rarediseases | Voices of Rare Cancer: Brian’s Story - NORD (National... |
| aamds | MY 12 y BATTLE WITH MDS - By Jane Biehl PhD |
| aamds | “I’m Like You” Patient Stories | Aplastic Anemia & MDS International … |
| aamds | Stories of Hope | Aplastic Anemia & MDS International... |
| anthonynolan | Emma’s story - Living with MDS as a young woman |
| bloodresearch.or.kr | An interesting story of a clone - BLOOD RESEARCH |
| cancerresearchuk | Myelodysplastic syndrome | Cancer Chat |
| curetoday | In the Mist of My Fear: Experiences With MDS - CURE Magazine |
| curetoday | The Roller Coaster of MDS - Cure Today |
| elcaminohealth | Maria’s Story: Myelodysplastic Syndrome (MDS) |
| leukaemia | Stories - Leukaemia Foundation |
| leukaemia.au | Diagnosed with MDS, AML, then MDS again |
| mdanderson | Why a myelodysplastic syndrome patient didn’t settle |
| mdanderson | How a myelodysplastic syndrome survivor found strength |
| mdanderson | How art helped my daughter cope with MDS treatment |
| mdanderson | Spouses face back-to-back hairy cell leukemia and... |
| mdanderson | Life as a myelodysplastic syndrome survivor: New beginnings |
| mdanderson | How a clinical trial gave me my life back after MDS and AML |
| mdanderson | Myelodysplastic syndrome survivor: A targeted therapy clinical... |
| mdanderson | Myelodysplastic syndrome researcher: Leaps of faith led to my... |
| mdanderson | Myelodysplastic syndromes clinical trial participant: I don’t... |
| mdanderson | Myelodysplastic syndrome survivor: A stem cell transplant put... |
| mdanderson | Myelodysplastic syndrome survivor: Why I joined a clinical trial |
| mdanderson | Myelodysplastic syndrome: What you need to know |
| mdanderson | My new normal: Life after myelodysplastic syndrome |
| mds-foundation | Patient Stories - MDS Foundation |
| mskcc | Nancie’s Story | Memorial Sloan Kettering Cancer Center |
| youandmds | George’s story: How did you find out you had MDS? |
| youandmds | Patient Video - George’s story: How did you find out... |
| youandmds | Patient Video - George’s story: What has been the biggest... |
| youandmds | Patient Video - David’s story - You and MDS |
| youandmds | Abby’s story: What advice do you have for other patients on... |
| YouTube | Becky’s story: What is your MDS gene mutation... - YouTube |
| YouTube | Barry’s story: What has been the biggest challenge... - YouTube |
| YouTube | Patient Success Story | Bone Marrow Transplant | Dr. Rajib De |
| YouTube | Myelodysplastic Syndrome (MDS) patient discusses her... |
| YouTube | A Patient’s Story: Myelodysplastic Syndrome - YouTube |
| YouTube | David’s story: What advice do you have for other patients on... |
| YouTube | Donna’s story: How has your gene mutation profile... - YouTube |
| YouTube | Holly’s story: What advice do you have for other MDS patients... |
| YouTube | Story Corner: Memorie Munson (Caregiver, MDS) - YouTube |
| YouTube | Aplastic Anemia Patient Story - Mychaela Lovelace - YouTube |
| YouTube | Story Corner: Mario Rivera and Alison Hines - YouTube |
| YouTube | David’s story: How did you find out you had MDS? - YouTube |
| YouTube | 249: Azra Raza | Myelodysplastic Syndromes And... - YouTube |
| YouTube | Max, Sophia and Tom Greb’s Story - YouTube |
| YouTube | George’s story: What advice do you have for other patients on... |
| YouTube | Patient Story: Akara from Cambodia - YouTube |
| YouTube | Story Corner: Lisa Zieske (Aplastic Anemia, MDS, PNH) |
| YouTube | Barry’s story: How was your MDS-related anemia diagnosed? |
| YouTube | Luke & Molly’s Story - YouTube |
| YouTube | Story Corner: Joe Ellenberger (PNH, transplant) - YouTube |
| YouTube | National MDS Day: Jad Harris’ Story - YouTube |
| YouTube | Story Corner: Adrienne Torrey and Joe Coffidis (MDS) |
| YouTube | Myelodysplastic syndrome (MDS) survivor Holly... - YouTube |
| YouTube | Inspirational Story - Bone Marrow Transplant | Survivor Interview |
| YouTube | Sharing My Voice: Joan’s Story - YouTube |
| YouTube | The Caregiver’s Journey: Caring for the Caregiver |
| YouTube | The Caregiver’s Journey: Exploring Emotions |
| YouTube | The Caregiver’s Journey: Finding Support |
a
MDS: myelodysplastic syndrome.
b
AML: acute myeloid leukemia.