Unmet Needs of Cancer People

Finally someone figured out that there might be unmet needs of people after a cancer diagnosis.  A study was recently done:

"Cancer [people*] face unmet needs. These are needs which lack enough service or support for survivors to achieve optimal well-being. Understanding the needs of cancer survivors can help guide services and support to meet the needs of [people*]."

To complete this study, they asked over 9000 people one question: "Please tell us about any needs you have now as a cancer [person*] that ARE NOT being met to your satisfaction". Only one question. But they could answer how they wanted and then they sorted out all the results.

Here are the answers:

Physical needs: 38.2% needs affecting the body, including pain, symptoms, sexual dysfunction, diet, exercise, and rest. 

Financial problems: 20.3% 

Education and information needs: 19.5% needs which were related to unanswered questions and the lack of information about cancer. 

Personal control problems: 16.4%  related to one's ability to maintain autonomy over one's body. Health care system needs: 15.5% 

Access to supplies, medications, and transportation services: 13.8% 

Emotional and mental health problems: 13.7% had emotional and mental health problems

Social support needs: 12.7% 

Problems with social norms, discrimination, misinformation, and policy: 10%

Communication needs: 8.5% 

Problems with their relationship with healthcare workers: 8.25% 

Some groups had more than one problem, in fact women with breast cancer had an average of 2.88 unmet needs.

I was glad to see some kind of research into this. I feel that the medical profession takes care of you during diagnosis and treatment and then that's it. You get a 'come back and see me in 6 months'. And the patient is left grasping at straws. So of course there are more needs for the patients. But the bottom line didn't do much for me at all:

"The authors concluded that the needs of cancer [people*] are important and should be researched further."
I'll just hope for more research.
*I can't use the S-word, I find it offensive.

The Post Cancer Diagnosis Life

As I have said before, if you haven't walked the walk, you can't talk the talk. This is a pet peeve of mine.

Once you are diagnosed with cancer and thus had your life turned upside down and inside out at the same time, it takes time to return to a balance, that so called 'new normal' you hear about (but never really attain or understand). You may be the same but you aren't. You have new insights into life after going through those experiences. You have 'walked the walk' and are now a member of a new group - cancer people.

Cancer people are the ones who have been the perils of diagnosis, chemotherapy, radiation, hope and despair. Its a group of people who never thought they would be in it but are doing okay now that they are there. They are happy they are still alive to participate. They have more emotional ups and downs than anyone else. No one else can understand what life is like for them.

There is another group of well meaning people out there who try to help cancer people but since they haven't 'walked the walk', they can't 'talk the talk' no matter how much they try. These include care givers, providers, and more. Unless an oncologist or oncological nurse has had cancer, they never quite get it. Unless a therapist has had cancer, they never quite get it. Never mind insurance companies who never get anything and just like the word 'no'. (But that's a different blog post.) Or drug development people who really do n't get it.

We cancer people accept their help but realize there may be holes in what they can provide. They do their best but it will never quite be all encompassing. However it is rare that a cancer person's life was not derailed enough so they want and are still able to provide support and care that would fill all the gaps.

As a cancer person, do you really want to open up to your career path and reveal your medical history and face the societal backlash (where people think you are too 'sick' to be a full employee) in order to fully fill the role of a cancer support person? (Again another blog post.)

When cancer people meet, the conversation tone subtly changes. Because we have 'walked the walk' and are now together.

Not so much for me

So Apple and UCLA's Jonsson Comprehensive Cancer Center, Penn Medicine, Dana-Farber Cancer Institute and Sage Bionetworks have developed an app to help improve the quality of life for women after breast cancer. I'm not going to run out and buy an iPhone anytime soon so its not going to help me.

I welcome the idea of collecting data on mobile technology so those of us with chemo brain don't have to remember something until we get home to log it into the computer. But I am not happy that it is only available on one platform, which will instantly create bias in the data collected.

I honestly believe that the medical facilities involved are concerned about the quality of life for breast cancer patients. I do not believe Apple is as concerned, they only want to sell more phones. And if you believe the statistics, iPhone users are more likely to be highly educated and rich. so what about all of us Android and Windows users? We aren't cool enough to be involved?

So the bias comes from the fact that the educated and better off breast cancer patients will have more access to other modalities to care for themselves after treatment. They are more likely to be able to afford acupuncture, therapists, and more.

This advance to use mobile technology will not be equal and unbiased if it is available on Android and Windows platforms.