March 29, 2024
https://blogs.oncolink.org/2021/02/countdown-to-100000-oncolife-survivorship-care-plans-how-it-all-started/

In April of 2007, OncoLink launched the OncoLife Survivorship Care Plan, a instrument to create care plans for individuals who have survived most cancers. As that instrument reaches the milestone of 100,000 care plans created, OncoLink’s Managing Editor, Carolyn Vachani, seems again on this system’s origins.

In 1996, The Institute of Medication printed a report referred to as “From Most cancers Affected person to Most cancers Survivor: Misplaced in Transition.” This report shined a lightweight on the problems individuals face after most cancers therapy and the dearth of assist to assist them deal with these points. It was a complete evaluate of the after-effects of most cancers therapy; in different phrases, well being issues brought on by the therapies themselves. These are also known as long-term (lasting years after therapy) or late (occurring months to years after therapy) results. The report additionally highlighted the psychological and sensible issues after a analysis. It prompt all survivors ought to obtain a therapy abstract detailing the therapies they acquired, and a survivorship care plan that comes with bodily, psychological, and sensible after-effects of therapy and tips on how to stop and/or handle them.

Quickly after this report, you’ll have been hard-pressed to discover a convention for oncology professionals that didn’t have one – if not many – periods on the subject of survivorship. Prefer it or not, a brand new buzzword had been created.

I sat in lots of these convention periods listening to about all of the items of knowledge a survivor ought to obtain and the way tough it was to offer this info. I began to really feel that perfection was changing into the enemy of fine. There was loads of info we may present survivors. Was it excellent, research-based info to cowl the whole lot the IOM wished for? Not utterly, however from a survivor’s perspective, some useful info was definitely higher than no info in any respect.

Over at OncoLink, we have been receiving emails from survivors questioning if well being points that they had might be associated to their most cancers therapies. The reply was normally sure, however wanting visiting a medical library and brushing by means of journals, a affected person wouldn’t come throughout this info simply. Keep in mind, it was the early web! Usually their healthcare suppliers have been unaware of the connection. 

This obtained our little workforce brainstorming. On the coronary heart of our mission is schooling, and similar to we train sufferers about managing nausea or hair loss, we felt compelled to show survivors about life after most cancers. However each therapy had totally different long-term and late results. We would have liked a program to compile info particular to no matter therapy that consumer had acquired. It needed to be simple to make use of and accessible to sufferers, utilizing therapy info a affected person would know, then presenting what they wanted to know in our normal conversational fashion. We set to work.

After a yr devoted to researching, writing, and tech constructing, we had created a program to assist survivors find out about long-term and late results in a survivorship care plan format. The primary model of the OncoLife Survivorship Care Plan was launched on April 23, 2007. Our aim was to coach survivors, assist them find out about prevention and monitoring for late results, and most significantly, assist them begin a dialog with their healthcare suppliers about late results. We had no thought the place this little-engine-that-could would go, however we have been prepared for the journey.

Flash ahead fourteen years, and this little engine has grown considerably. OncoLife is quick approaching its 100,000th care plan created! This milestone just isn’t misplaced on this workforce – so many individuals getting the schooling to assist them navigate life after most cancers is humbling. It pushes us to do extra, to think about what’s subsequent, tips on how to enhance the instrument and attain extra individuals. Sadly, 25 years after the IOM report, most survivors nonetheless don’t obtain care plans. However this little engine goes to maintain on chugging till they do.


Carolyn Vachani is an oncology superior follow nurse and the Managing Editor at OncoLink. She has labored in lots of areas of oncology together with BMT, medical analysis, radiation remedy, and employees growth. She serves because the venture chief within the growth and upkeep of the OncoLife Survivorship Care Plan and has a powerful curiosity in oncology survivorship care. She enjoys discussing nearly any most cancers matter, in addition to gardening, cooking and, after all, her sons.