Promoting Resilience in Children with Serious Illness and their Families

April 27, 2021

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Yale Cancer Center Grand Rounds | April 27, 2021

Abby Rosenberg, MD

ID6536

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00:00Great, thanks everyone for joining
00:02our Cancer Center grand rounds.
00:04Today my name's press 9 month.
00:07I'm a faculty member in the
00:09Department of Pediatrics.
00:10I have the distinct honor of
00:13introducing our Cancer Center,
00:14grand rounds,
00:15guest speaker today Doctor Abby Rosenberg.
00:18Doctor Rosenberg is an associate
00:20professor of pediatric hematology
00:22and oncology at the University of
00:24Washington School of Medicine.
00:26The director of Pediatrics at the
00:28Cambia Palliative Care Center of
00:30Excellence at University of Washington,
00:33director of the pilot of Keran Resilience
00:35Laboratory at Seattle Children's
00:37Research Institute and the Director
00:39of Survivorship and Outcomes Research
00:41at Seattle Children's Hospital,
00:43Cancer and Blood Disorders Centers
00:45through her work as Program Co.
00:47Director for the University of Washington
00:50T32 program in Positive care research.
00:52And a lead mentor in the palliative
00:55care and Resilience Laboratory
00:56Doctor Rosenberg is very active
00:58and training the next generation
01:01of palliative care and supportive
01:03oncology clinician scientists at the
01:06postdoctoral and junior faculty levels.
01:08Doctor Rosenberg Additionally holds
01:10multiple national leadership positions.
01:11She's the chair of the Ethics Committee at
01:14the American Society of Clinical Oncology.
01:17The Co.
01:17Chair of the scientific program for
01:19the Annual Assembly of the American
01:22Academy of Hospice and Palliative Medicine,
01:24and the Associate editor in Chief
01:26of Palliative Care.
01:27Fast article summaries for clinicians.
01:30Doctor Rosenberg's NIH funded research
01:32focuses on developing programs to
01:34help patients and families with
01:37serious illness build resilience,
01:39thereby alleviating suffering
01:41an improving quality of life.
01:44The title of Doctor Rosenberg's
01:45talk today is promoting resilience
01:47in children with serious illness
01:49and their families.
01:50I'll be moderating the discussion afterwards,
01:52so please enter your questions into
01:54the chat function will take questions
01:56after Doctor Rosenberg's talk.
01:58Thank you so much Doctor Rosenberg
02:00for speaking with us today.
02:03Thank you for having me.
02:04This is such a pleasure to be here
02:06and that was a very very kind
02:08introduction process that it's really
02:09humbling in a little embarrassing,
02:11happy to be here with all is as
02:13all of you as you just heard,
02:16I'm going to talk today about promoting
02:18resilience in patients and families
02:19with serious pediatric illness.
02:21And by way of a disclaimer,
02:23I know this is a larger Cancer Center.
02:25Grand rounds.
02:26As a pediatrician,
02:27I'll be talking about what we've
02:29learned in our work with adolescents
02:31and young adults with cancer,
02:32and by the end of this talk I will be
02:35sharing with you how translate abalar
02:37experiences to older patients with cancer,
02:39their caregivers,
02:40and ourselves.
02:41As folks who are caring for these patients.
02:48So I wanted to start with this
02:50question about why resilience.
02:51Why are we talking about this
02:53particular construct today?
02:54Why does it matter for our
02:56patients with cancer for me,
02:57Despite that lovely introduction,
02:59that piece of my history that you
03:02didn't hear is that I started my career
03:04as a social worker and I will say
03:06I was vastly undertrained and under
03:08qualified to do the work I was doing,
03:10taking care of kids with HIV
03:13and their families during the
03:15tail end of the HIV epidemic.
03:17I burnt out within about a year
03:19from that work and the thing that
03:21I continued to think about during
03:23the year and then thereafter during
03:25my training in medical school in
03:27pediatric residency and fellowship
03:29and ultimately in my experience as an
03:31oncologist in palliative care physician,
03:33is this why are there some patients
03:35and families who seem to figure it out,
03:38if not thrive in the face of adversity,
03:40is like cancer?
03:41Why are some other people just falling apart?
03:44And is there a way that we could
03:46teach to the ones who are struggling
03:49with the ones who had figured it out?
03:52Seem to have learned on their own.
03:53If we did that,
03:55would we be improving the quality
03:57of life of patients with cancer
03:59and their families?
04:00It turns out it's pretty hard to
04:03translate this idea of what resilience
04:05is into what we do in medicine,
04:08and there were definition of resilience
04:10comes from the material Sciences and physics.
04:12It's defined as the capacity of
04:14a particular material to absorb
04:16energy when it's deformed,
04:18and then appan up unloading to
04:20have its energy recovered.
04:21So the classic example is a rubber
04:24band where you stretch it an IT
04:26rebounds back to its original shape,
04:28and therefore it is resilient.
04:31But what does that mean when
04:32we're talking about patients and
04:33families in their own experiences?
04:35And when I started this work
04:36over a decade ago,
04:37one of my mentors said this to me.
04:39He said, Abby,
04:39if you want to change something,
04:41you have to be able to measure it.
04:43When you say resilient,
04:44what are you talking about?
04:46What are you measuring?
04:48What are you actually changing?
04:50When we started this question was
04:52hard to answer to because there
04:54was a lot of controversy in the
04:56world of psychology and social
04:58Sciences about what resilience is.
05:00This is a study done by a
05:02psychologist named George Bonanno
05:03who studies bereavement and he's
05:05one of the preeminent scientists
05:07in the resilience world.
05:08On the X axis,
05:09here's time and on the Y axis is
05:12levels of distress and depression.
05:14And you'll notice there are three
05:16lines of people moving through their
05:18lives until a traumatic event happens.
05:20In this case,
05:21it's the death of their spouse
05:23and following that,
05:24every single one of those lines
05:26has a normal and expected spike
05:28in distress and depression,
05:29followed by some new pathway towards
05:32wherever folks are going to end up.
05:34And was really interesting
05:35to me about this graph.
05:37Is that it kind of illustrates the three
05:40controversies that at the time were
05:42swirling around how we should think
05:44about and operationalize resilience.
05:46There was a school of thought who
05:48would look at this graph and say
05:51resilience is defined on the left.
05:53It is a innate,
05:54perhaps immutable characteristic,
05:55something like grit,
05:56hardiness, optimism,
05:57something we either have or we don't,
06:00and whether we have that thing
06:02or not predisposes us to being
06:04resilient in the long run.
06:06So sure enough,
06:07there's a group that's represented with
06:09that line dot line there at the top
06:12of these three collections of lines.
06:14They are for whatever reason.
06:16Less resilient at baseline.
06:17They're less protected from this trauma,
06:19and sure enough they end
06:22up having chronic grief.
06:24A second theory on a second debate
06:26was that resilience was a process
06:27of how we adapt to our adversities,
06:29how we change with our new normals,
06:32and they would look at this graph
06:33and they'd say no resilience
06:35is defined in the middle.
06:37It's the way that recovery line is
06:38able to go from a relatively high
06:41level of distress to a relatively low
06:43one because they figure it out along the way.
06:45And if we wanted to intervene,
06:47we could move the needle by
06:49helping those folks to cope better.
06:52And then a final school of thought
06:54was that no,
06:55no resilience is defined on the
06:57right of this graph.
06:58It is only measurable after
07:00a particular trauma,
07:01and after a particular amount of
07:02time has passed and resilience
07:04after the death of a loved one
07:06might be different than resilience
07:08after a natural disaster or war,
07:10and you can only tell that
07:11someone is resilient or not based
07:13on some dichotomized outcome.
07:15So if you have a negative outcome,
07:17for example, you must not be resilient,
07:19and if the absence of that outcome,
07:22like chronic grief, is notable.
07:23Then you must be resilient 'cause you're
07:25doing better than we might expect.
07:28So for me as a clinician who was
07:31relatively early in my career
07:33as a pediatric oncologist,
07:34I felt like none of these
07:37theories matched to what I saw.
07:40And here are some of my questions.
07:42Number one is illness.
07:43An isolated event?
07:45Can you draw a single line on a
07:47cancer patients experience and
07:49say this is the moment that they
07:51have to define their resilience?
07:53Or is resilience a series or illness?
07:56A series of micro traumas and
07:58micro and macro events that can
08:01change someone's whole trajectory?
08:03Who's the unit?
08:04In Pediatrics, we look at patients.
08:06We look at their siblings.
08:07We look at their families with
08:08a look at their social supports
08:10in their school communities.
08:11Which of those units is the way
08:13I need to think about resilience
08:15and my defining resilience for
08:16the patient or for their family?
08:20Is there a difference between getting
08:22through adversity or growing from it?
08:24A lot of the resilience is an outcomes
08:26theory at the time was saying,
08:28you know you really have to
08:30show some benefit, some growth,
08:31some lesson learned,
08:32some some idea that you have improved
08:34from whatever your adversity is in
08:36order to demonstrate resilience,
08:37and I will tell you when I was
08:39starting this work I was working
08:41with a lot of bereaved families an
08:44I would ask them what do you think
08:46about this idea of resilience?
08:47What do you think about this idea
08:49that you're supposed to have grown
08:51from it and they would say you know
08:53it's pretty offensive that you think
08:54I'm supposed to somehow be better
08:56from having my child die from cancer.
08:57The fact that I got out of bed today
08:59makes me pretty darn resilient.
09:05Which outcomes matter into poems.
09:08If I'm a pediatric oncologist taking
09:09care of a teenager with cancer,
09:11I might say that that person is
09:13resilient because they're taking their
09:15oral chemotherapy as I prescribe it.
09:17Their mom might say they're
09:19resilient because they're going to
09:20school and maintaining their GPA.
09:22And the patient might say they're
09:24resilient because they've
09:25maintained their social network.
09:27Who's right?
09:30How do we integrate individual differences?
09:32Is there a one size fits all in resilience?
09:35Or does my resilience look somewhat
09:38different from someone elses?
09:40And finally, how do we integrate
09:43cultural differences into these ideas?
09:45This last one is important
09:47because this idea of resilience.
09:48This value that we put on
09:50it is very very Western.
09:52So here in the United States we
09:54say that things like that which
09:56doesn't kill you makes you stronger.
09:58No pain, no gain.
09:59We have this inherent respect for people
10:01who can pull themselves up from their
10:04bootstraps and lived this American dream.
10:06But that is really an American ideal,
10:08and it doesn't actually
10:10translate around the world.
10:12In Southeast Asia, resilience has been
10:14equated with the sense of balance.
10:15So instead of the stretchiness of a
10:17rubber band, it is the lack of stretching.
10:20It is the willingness or the ability of
10:23a material to stay within its shape.
10:25In South American cultures,
10:27resilience has been equated with
10:30and upholding the values.
10:32In Afghanistan,
10:33resilience has been equated with
10:35mastery in a particular skill set.
10:38In Native American cultures
10:40here in the United States,
10:41resilience President has been equated
10:44with spirituality and a constant
10:46quest for meaning and purpose.
10:48And what is fascinating is that
10:50in almost no language in the world
10:52is there a direct translation
10:54for the word resilience.
10:56In the places where this does exist,
10:58it is either translated back from English
11:00into whatever is the native language,
11:02based on an Americanization of their culture,
11:05or it is purely described as that physical
11:08science construct that I started with.
11:12So with this sort of swirling set
11:14up debates and this challenge that
11:16we were having as a community,
11:18figuring out what resilience was in
11:192013 at the International Society
11:21of Traumatic Stress Studies,
11:22there was a plenary panel where they
11:24got a whole bunch of resilience
11:26researchers up on stage,
11:27including George Bonanno,
11:28whose graph I just showed you.
11:30And this is a picture of a
11:32cultural anthropologist named
11:32Doctor Catherine Pantry brick.
11:34She's speaking here at a
11:35different organization,
11:36but she was one of the speakers at
11:38this plenary and what she does is
11:40what's called ethnographic studies,
11:41and she goes around the world and she.
11:44Lives in places that are
11:46going through adversity,
11:47and she bears witness,
11:48so that might be going to a
11:50place that has just undergone
11:52a war or a natural disaster,
11:54or folks who are living in poverty
11:56and what she's noticed in all of
11:58her work is that consistently across
12:00every adversity she has studied.
12:02Resilience is a process of
12:04harnessing the resources we need
12:06to sustain our well being.
12:09And more importantly,
12:11she says that in every single adversity,
12:13how people do that is they harness
12:16resilience, resources that always fall
12:18into one of these three categories.
12:20The first is our external
12:22resilience resources.
12:23These are things like our social support,
12:26our community, who helps us.
12:27This second is our internal
12:29resilience resources.
12:30These are traits like grit and
12:32hardiness as well as learn skills
12:34like how we adapt and cope and then
12:37finally existential resilience.
12:39Resources are things like meaning making,
12:41faith, spirituality.
12:42These sorts of inherent human questions
12:44that we ask when times get tough.
12:45Which is why is this happening to me,
12:47and what does this mean for my family?
12:53I will say that when I was starting to try
12:55to figure all of this out and think about
12:57what it meant for our patients with cancer,
13:00I really struggled with how to translate all
13:02of these different and conflicting theories
13:04into what we could do at the bedside.
13:06And at the same time there was a similar,
13:10if not parallel debate happening in the
13:12psychology and social Sciences about how
13:15we experience what we see in the world.
13:18And specifically, this is a theory
13:20called stress and coping theory,
13:21which essentially says that our
13:23perceptions influence our outcomes.
13:24So if we go through a stressful event,
13:26the first thing we do is we think about it.
13:29We appraise it, we say,
13:31is this a good or a bad thing for me?
13:34Is this catastrophic or is this manageable?
13:36And the answer to that appraisal question
13:38the veillance we apply to that response,
13:40translates to how we cope,
13:42how we feel and how we function.
13:45And the idea behind this theoretical
13:47construct is that if you can change
13:49the balance of that appraisal
13:50from catastrophic to manageable,
13:52for example, you can change your coping,
13:54emotional and functional outcomes
13:55to be more positive.
13:59So we first tested this idea of do
14:02people's perceptions of their own
14:03resilience translate to outcomes in
14:05a cross sectional study of bereaved
14:07and non grooved parents of children
14:09with cancer we had about 120 parents
14:11in this study and the first thing
14:13we noticed is that when you use a
14:16validated instrument to measure
14:18self perceptions of resilience,
14:19parents of kids with cancer feel less
14:22resilient than the rest of the population.
14:24There's something about having watched
14:26your kid go through cancer that makes
14:29you believe you are less resilient.
14:31And perhaps not more poignantly,
14:33parents who reported lower
14:35resilience were the ones who had
14:37ongoing psychological distress,
14:39sleep difficulties,
14:39an in abilities to express their hopes,
14:42and worries to their medical team.
14:47Around the same time in the
14:49gerontologist there was an analysis
14:51of the US Health and Retirement Study.
14:53Most of you know this.
14:54This is a long, ongoing cohort of
14:57American adults, ages 50 to 98.
14:58In this particular analysis and what
15:00they did here was they asked folks to
15:03fill out a survey about their self,
15:05perceived resilience,
15:06and then they monitor them overtime.
15:08And let's say you had two gentlemen who
15:10were matched in every way except one,
15:12believed he was resilient and
15:13the other doesn't,
15:14and they both go through their lives and
15:16they both fall down and break their hips.
15:19The gentleman who believed he was less
15:21more resilient for whatever reason,
15:22is going to get back up and return
15:25to his activities of daily living.
15:27The gentleman who believed he
15:29was less resilient again,
15:30for whatever reason,
15:31is not only going to not go to
15:33physical therapy and not return to
15:35his activities of daily living,
15:37but he's going to die sooner.
15:38His life expectancy is actually shorter.
15:43My research partner is a health psychologist
15:46and behavioral scientist named Joyce E.
15:48Frazier. This is some of her earlier work.
15:50She works with patients with diabetes,
15:52and here on the X axis is changes in
15:55diabetes related distress on the Y
15:57axis is changes in hemoglobin, A1C,
16:00or a marker of glycemic control.
16:03And here on those two dotted
16:04lines that are sort of diagonal,
16:06these are folks who believe again
16:08for whatever reason that they are
16:10less or moderately resilient,
16:12and for them changes in A1C level
16:14translate directly to changes in distress,
16:16meaning that the more swings there
16:18are in their distress levels,
16:20the harder it is for them to
16:22control their diabetes.
16:23In contrast,
16:23that more flat solid black line
16:25represents people who believe
16:27that they're more resilient,
16:28and for them even wide fluctuations
16:30in their distress don't translate
16:32to changes in a onesie.
16:36As a validation at we did another
16:38analysis at the Seattle Cancer Care
16:40Alliance among about 1800 patients who
16:42had received a bone marrow transplant.
16:44And here again, those who reported
16:47low resilience were the ones who went
16:49on to have more frequent missed work.
16:52Increased disability,
16:52lower quality of life,
16:54higher psychological distress,
16:55and more frequent medical complications
16:57during their survivorship period.
17:02So all of this sounded really
17:04interesting to me, and it felt like
17:06there was something there, but I still
17:08didn't know how to take these ideas,
17:10and these theories and identify
17:11him and operationalize resilience
17:13in the patients and families.
17:14I was working with.
17:15And so the next thing we did was
17:17what in the rest of the world
17:19would be called market research.
17:21It's sort of when you go directly to
17:23your stakeholder and you say hey,
17:24what should we do?
17:25What would you like to do?
17:27What would you use?
17:28What materials would be helpful to you?
17:30And in the Health Sciences we
17:31call this qualitative work.
17:32So similarly,
17:32we went directly to our stakeholders
17:34and we said we need to understand this
17:36concept from your own perspective.
17:37What would be helpful to you?
17:40We started with parents.
17:41We went back to that cohort of
17:44120 parents that we had and we
17:45started to listen to their stories
17:47while we surveyed them using
17:49validated instruments of their self,
17:51perceived resilience and what they
17:52shared with us is that resilience is,
17:54for example, who I was,
17:56what I learned, how I ended up,
17:58and what it all meant.
18:00This was apparent who sat next to
18:02me looking at that banana graph
18:03and saying no no.
18:04It's the left,
18:05middle and right and the whole thing for me.
18:09Or resilience is facilitated by who
18:11I am who helps me and what I believe
18:13this was a parent who identified
18:15those resilience resource categories
18:17and said all three of them matter.
18:21What was particularly interesting
18:23about this analysis is,
18:24as I said, we have these surveys,
18:26and we interviewed people
18:27at the end of the surveys,
18:29we asked folks to fill out a final
18:31page that essentially said tell
18:33us whatever else you think we need
18:35to know and parents wrote pages,
18:37pages and pages and pages of
18:39stories that they felt like were
18:41important for us to understand.
18:43And when we got these things in the Mail,
18:46we read them and I said to myself, huh?
18:49Here's resilience.
18:50There's resilience in these stories.
18:52And so a social worker, health services,
18:54researcher and I all of us read 120
18:56different transcripts blinded to each other,
18:59and we graded all 120 as
19:01either resilient or not.
19:02Did this person seem resilient
19:04to us in their words?
19:07And what was really interesting
19:08to us is that we agreed we,
19:11three blinded reviewers, agreed in a
19:13person's categorization of resilience.
19:14Our labeling of their resilience
19:16100% of the time.
19:17120 out of 120 times.
19:19We agree.
19:21And then when we looked at how our
19:23impressions of their resilience aligned
19:25with validated patient reported outcomes,
19:27we were wrong.
19:28Half the time we were as good
19:30as a coin toss in predicting
19:33somebody else's resilience.
19:34When we looked more carefully,
19:36we were a little bit better at
19:38recognizing someones distress.
19:39Our impressions of their lack
19:41of resilience aligned with their
19:43measurement of their own distress
19:45and what that tells me is 2 things.
19:47Number one we in medicine tend to
19:50assume someone is not resilient when
19:52they're having a hard time and #2.
19:54We in medicine probably shouldn't
19:56assume someone is resilient
19:58or not unless we ask them.
20:02The next thing we did was we did
20:04this same stakeholder engaged work
20:06with adolescent and young adults,
20:07or ay ay patients,
20:08and here I want to introduce you
20:10to a young man named Daniel Maher.
20:12He was one of our first key stakeholders,
20:14which means that every time
20:16I did an interview or every
20:17time I was developing an idea,
20:19he was one of the people I would sit
20:21down and talk to you about it and say,
20:24hey, am I getting this right?
20:25Does this align with your experience?
20:27Daniel had met a static and
20:29ultimately progressive Ewing sarcoma,
20:30and he died from his cancer several
20:31years after we started working together.
20:34And towards the end of his life I started
20:36asking him about his own resilience
20:38and how I should continue to tell
20:40his story or how it translated to the
20:41resilience of other folks with cancer.
20:43And he said Abby cancer happened
20:45to me for a reason.
20:46It's to help others like me understand
20:49and to make it easier for them somehow.
20:52And so, with Daniel's help,
20:53we interviewed multiple teens and
20:55young adults with cancer from
20:56the time they were diagnosed.
20:58Three months later,
20:58six months after that,
21:00a year after that and so forth,
21:02to the point that now,
21:03of course,
21:04without Daniel,
21:04we are continuing to interview
21:06some of these adolescent and young
21:08adult patients 10 years later.
21:10And what we hear from them
21:11are things like this.
21:13Resilience depends on the
21:14person and their experiences.
21:15It's kind of like exercising.
21:16You have to gain some muscle
21:18before you run a race,
21:19personal strength or resilience
21:20is how you rebound from something
21:22like being able to fight back.
21:24It can be taught.
21:25It should be taught.
21:29What's interesting to me about this analysis,
21:31which now includes hundreds and
21:32hundreds of hours of interviews
21:34with teens and young adults,
21:35is that at the beginning,
21:37many of these young patients don't
21:38know what the word resilience means,
21:40or they can't figure out what
21:41it is that they're doing to
21:43get through their experience.
21:44But once they do, once they figured out once,
21:47they can say, oh, this is what I do.
21:50They seem to latch on to that
21:52particular resilience resource,
21:52and they carry it forward.
21:54So even five or ten years later,
21:56they'll say, I don't know.
21:57This is what I do when times get tough.
22:00It's always what I've done.
22:01This has always been my thing.
22:06We distill those hundreds of hours of
22:08interviews into this particular idea of
22:10what helps somebody contribute to or
22:12inhibit their resilience at any given
22:14moment and for teens and young adults.
22:16It really does feel like a Teeter totter and,
22:19at any given moment, the scales can tip
22:21towards their feeling resilient or not.
22:24The things that contribute to that
22:26resilience are the sense of being able to
22:28manage their stress and idea of having a
22:31sense of purpose or goals to look forward to,
22:33being able to stay positive,
22:35being able to find meaning from their
22:37experience, and maintaining a sense
22:39of connection and social normalcy.
22:42And when we thought about these
22:43ideas in these constructs,
22:44we noticed two things.
22:46Number one,
22:47these top for stress management goal setting.
22:49Staying positive and meaning making.
22:51These are all things that we can
22:53teach individually to patients.
22:55Whereas a social support type of program
22:57felt different and #2 all of these
23:00things map back onto those resilience
23:02resource categories that Catherine
23:03Patrick had described so long ago.
23:08Which leads us to that,
23:09promoting resilience and stress
23:11management or PRISM program.
23:13And the first thing we debated when
23:15we were thinking about what to do
23:17next was where to start on the left.
23:19Here you're looking at one of our
23:20parent quiet rooms on the edges of our
23:22adolescent and young adult oncology floor.
23:24We have these separate spaces for
23:25parents to get away and have some time
23:28by themselves if they need to leave
23:29the patient room and on the right,
23:31you're looking at one of our
23:33other key stakeholders.
23:34So when we were thinking about this,
23:36we first thought about parents
23:38and we thought you know parents,
23:40particularly kids of parents of cancer
23:42have poor psychosocial outcomes.
23:43So specifically one in seven
23:44appearance of children with cancer
23:46will have such high distress that
23:48they can't take care of themselves
23:49or the other children in the home.
23:51And if you're a caregiver of
23:53a patient with cancer,
23:54it's really hard to access
23:56traditional mental health.
23:57Supportive care parents don't
23:58want to leave their kids bedside,
24:00as all of us know,
24:01it's incredibly difficult to network
24:03mental health services in the community.
24:05And we thought,
24:06wouldn't it be great if we could
24:07just provide something to parents
24:09here within the Children's Hospital
24:11so that we could support them?
24:13On the flip side,
24:14adolescents and young adults have poor
24:16psychosocial outcomes compared to
24:17younger pediatric or older adult patients.
24:19They have some of the worst
24:21psychosocial outcomes that we can find.
24:22They have higher rates of poor
24:24mental health and survivorship.
24:25They're less likely to get a
24:27job or get married.
24:28They are less likely to be paid the same
24:30as their otherwise age matched peers.
24:33They have higher rates of suicide
24:34and other serious mental health,
24:36comorbidities,
24:36and the idea that we had was
24:39maybe we could fix some of those
24:41problems if we started now.
24:43We also know that teens and young adults
24:44also have challenges with traditional
24:46methods for mental health support.
24:48So,
24:48for example,
24:49teens with chronic illness,
24:50only a third of them will access
24:52in hospital available mental
24:54health services and of the ones
24:55who do only a third stay in.
24:57And when asked why you aren't using
24:59these services that are available to you,
25:02most teens and young adults will
25:04say either the stigma or the
25:07time commitment is too much.
25:09But at the end of the day,
25:11when we thought about where to start,
25:12we felt we remembered that idea that
25:14I shared with you about how a lot of
25:17the teens and young adults we meet
25:18don't yet know how to be resilient.
25:20They haven't had the life skills yet,
25:22or no life opportunity yet to
25:24develop those resilience resources.
25:25And our curiosity was maybe we
25:26could get in the door and start
25:28teaching these skills right away.
25:30And if we did that,
25:31could we change some of
25:33these downstream outcomes?
25:35So that leads me to PRISM,
25:37which teaches and targets those
25:39same four resilience resources that
25:40we had heard from teens and
25:42young adults were important.
25:43The first thing we teach is
25:46stress management skills.
25:47This includes three mini
25:48skills within one session.
25:50The first mini skill is a deep breathing,
25:53simple relaxation technique.
25:54It helps people quiet their minds so they
25:57are receptive to additional learning
25:58and then the next too many skills are
26:01progressive mindfulness exercises.
26:03One to help deepen your relaxation
26:05and two to become aware of
26:08stressors without judgment.
26:09The next thing we do is
26:11a goal setting module.
26:13Here we teach what's called a smart
26:15goal that stands for specific,
26:17measurable, actionable,
26:17realistic and time dependent goals.
26:19We know from this psychology
26:20and social Sciences that any
26:22tiny forward progress towards an
26:24achievable and realistic hope is a
26:26very positive psychological anchor.
26:27And so we help a team.
26:29Translate quote.
26:30I just want to get through my
26:32cancer to something that is
26:35actually actionable and measurable.
26:36The next thing we do is what's
26:38called positive re framing
26:39or cognitive restructuring.
26:41And here we teach 2 mini skills.
26:43The first is how do you recognize
26:45all of that negative catastrophic
26:46self talk that can keep us up in
26:49the middle of the night and the 2nd
26:51is how do you change the appraisal?
26:53The valence of that appraisal
26:56from catastrophic to manageable.
26:58The complementary knice of mindfulness,
27:00for example,
27:00recognizing what's stressing
27:01you without judgment and then
27:03positive re framing,
27:04which is actually judging your thoughts and
27:06making them manageable and less catastrophic,
27:08is a really important psychological
27:10combination for helping people
27:12cope with adversity.
27:13And then the final thing,
27:14the anchor of all of this is meaning making,
27:17and here we help teens and young adults
27:20with the exercise of identifying benefits,
27:22gratitude,
27:23purpose, legacy.
27:23It's sort of asking that existential
27:26question of why is this happening?
27:27What are you going to be because of this?
27:30What matters to you?
27:31Who do you want to be next
27:33week when this is all over?
27:37After all, four of those sessions
27:39we have the optional meeting with
27:41the family called coming together,
27:43and this is essentially designed to
27:45help the patient share with loved ones.
27:47What worked for him or her and to
27:50help family members and caregivers
27:52reciprocate and reinforce the skills.
27:55And then after all sessions in between them,
27:57we offer opportunities to practice
27:59with boosters and worksheets.
28:01Prison, like many psychosocial interventions,
28:03is what we call Manualized.
28:04That means we have a very
28:06reproducible script.
28:07We measure Fidelity to make sure
28:08it's being delivered in the
28:10same dose and delivery style,
28:11and we train all of our coaches with at
28:14least 8 hours to make sure that they are
28:18certified and fluent in the program.
28:20All of our coaches are college grads.
28:23Some of them have PHD's,
28:25but by design we intended this to be
28:27coachable by folks who could be lay
28:30stuff so that it's more translatable
28:33across different institutions.
28:35The next thing we did having
28:37designed this was we tested prisms
28:38feasibility amongst adolescents and
28:40young adults with either diabetes,
28:42cancer or cystic fibrosis,
28:44and we notice that enrollment was very high,
28:4683% across the program with
28:48high completion rates,
28:49and each of these different groups of
28:52patients asked us to do PRISM differently.
28:55So for example,
28:56patients with diabetes here in Seattle
28:58will come from thousands of miles away.
29:00In Alaska.
29:00Our catchment area includes
29:01Alaska all the way to Wyoming,
29:03and so folks will come into
29:05Seattle for their diabetes.
29:06Care for one annual Big long day,
29:08and then the rest of their care
29:10is delivered via Tele Health.
29:11And they said, you know,
29:13we can sit with you for a long
29:15time on one day,
29:16or we want to do this through video,
29:19but we don't want multiple sessions overtime,
29:21and so patients with diabetes
29:22preferred to get it all in one chunk.
29:25In contrast,
29:26patients with cancer and cystic
29:27fibrosis tend to be in the hospital.
29:29They are often isolated and they said,
29:31you know, we want you to come visit us.
29:33Well, we're here in the hospital.
29:35We want you to sit at our bedside,
29:37and we'd rather break up the intervention.
29:39All those four sessions into
29:40separate four sessions delivered
29:41every other week or so.
29:45When we asked all of these
29:46young folks what they thought,
29:47their qualitative feedback or things
29:49like this, this is so helpful.
29:50I wish we'd done this sooner.
29:52Yeah, I was actually telling my
29:53friends about it afterwards and
29:55they said they would try it out.
29:56I think it's good techniques to use.
29:58Definitely, I'm teaching my little sister.
30:00I'm sure it can help her too.
30:02Or I used to be in the hospital
30:04and think it was a waste of time,
30:05not want to be there doing things
30:07like this make you realize you're
30:08here to make yourself feel better.
30:12So the next thing we did was a
30:14randomized control trial amongst 92
30:16adolescents and young adults with cancer.
30:18These are all of the outcomes
30:19we measured in that study.
30:21The zero line means there was no
30:23difference between patients who received
30:25usual care and those who received PRISM.
30:27And by the way, usual carrot,
30:29our center includes an assigned social
30:31worker for every single family available,
30:33psychology services and a whole host of
30:35other embedded psychosocial services.
30:37So moving left to right on this graph,
30:39you'll notice that resilience scores
30:41went up with the intervention.
30:43Distress scores went down with
30:44the intervention.
30:45Hope went up benefit finding went
30:48up and quality of life went up.
30:50Perhaps more importantly to me
30:52that D there is a statistically
30:54using behavioral science is called
30:56an effect size and by convention
30:58anything greater than .3 is considered
31:01clinically significant and in every
31:02single way that we could look,
31:05there were clinically significant
31:07changes in these outcomes of interest.
31:10But we weren't looking for was this
31:13six months after the study started.
31:15We looked at the surviving 74 patients
31:17who were still available and we
31:20looked at their clinical criteria
31:22for depression and we notice that
31:2421% of the usual care patients
31:26versus 6% of the prison patients
31:28met criteria for depression,
31:29which translated to a 90% reduction
31:31in the odds of developing depression
31:34during those first six months
31:35of their cancer experience.
31:40The next thing we did was we tried to
31:42figure out are things getting better
31:44or they staying the same like what's
31:46happening when you get prison versus
31:48usual care and so each of these pairs
31:50of graphs has the usual care group
31:52on the left and PRISM on the right,
31:54and you're looking at clusters
31:55of resilience scores.
31:56Hope benefit finding,
31:57quality of life and distress
31:59moving left to right.
32:00In red means that their scores
32:02deteriorated overtime in pink means
32:04they started at risk and stayed there.
32:06Light blue means they were well
32:08at the beginning and stayed there.
32:10An blue means they got better
32:13overtime and the takeaways here
32:14are that in every single scenario,
32:16folks who got prism improved
32:18and folks who didn't get prison
32:20were more likely to deteriorate.
32:25Finally, anecdotally, this is one of
32:27my favorite findings from this study.
32:29We gave each of the participants in each
32:32arm $50 at the end of their participation,
32:35and then we got this in the Mail.
32:39This is a letter that said, Dear Abby,
32:40thank you so much for the $50.00 gift card.
32:42I had a great time doing this study and
32:44learn a lot of great life skills that I
32:46will continue to use for a long time.
32:47So thank you so much for letting
32:50me participate.
32:51Like the perfect example of
32:52a well mannered teenager.
32:57The other thing we heard from patients was,
32:59hey, my mom needs this too for my dad
33:01needs us too and we heard from parents.
33:04Hey, can you do something like this?
33:06For me this seems really helpful
33:07and so we went back to that
33:09original question we had about.
33:11How do we support parents and we said,
33:13well maybe we should have tried that
33:15also and we adapted the program using
33:17the same for PRISM skills but with
33:19language that was more appropriate
33:20for parent experiences and we piloted
33:22the program amongst 24 parents.
33:24And again they reported that
33:25it was very valuable.
33:26Qualitatively,
33:26they said this should be part
33:28of every parent's toolbox.
33:29These skills help us to take
33:31better care of our kids.
33:33And before and after the intervention,
33:35their resilience went up in
33:36their distress scores went down.
33:40The challenges, though,
33:41that parents reported to us was
33:43that it was really hard for them to
33:45get away from their kids bedside.
33:46This was exactly our concern
33:48when we started to do this work,
33:49and so we tried to brainstorm what would
33:51be an easier way for parents to do this.
33:54And maybe it would be a symposium
33:56style coaching program where we
33:57have a whole lot of parents.
33:59Together they sit with us for four hours
34:01and we deliver the program that clap.
34:03And so we we hold a symposium.
34:05We had about 72 people show up at the door.
34:08We had turn folks away and we put
34:10them at Round Top tables in a big
34:12room and we did group coaching of the
34:14PRISM intervention of RFR Hour period.
34:1792% of parents said they gained
34:19new insights and skills.
34:2098% said it was easy to understand
34:22and 100% felt like the group format
34:26was helpful to them.
34:28So then we said, OK, well,
34:30what's better group coaching
34:32versus usual care or one on one?
34:34Coaching versus usual care.
34:35So we did another randomized trial
34:37this time amongst 102 parents or
34:39caregivers of children with cancer.
34:41And here you're looking at a forest
34:43plot of usual care compared to
34:45one on one coaching.
34:46And what we found was that the
34:49intervention when delivered one on
34:51one improved parent resilience and
34:53benefit finding compared to usual care.
34:56But when we compared group to usual care,
34:58we actually couldn't see any differences,
35:00but in outcomes it looked like the
35:03group delivery didn't seem to have an
35:05effect on parent resilience or any
35:08of our other outcomes of interest.
35:10And there's more to the story than what
35:13we could see in those quantifiable data.
35:16So I want to share her story
35:18with you of a particular parent.
35:20This was a father whose daughter
35:22died unexpectedly about two weeks
35:24after his group PRISM session.
35:26And when she died,
35:27we as of study team were trying
35:29to figure out you know,
35:31how do we re engage this dad?
35:33Do we?
35:33What would his resilience skills
35:35scores look like in the context of
35:37this immediate death of his daughter?
35:39And so at the end of the day,
35:41we decided to reach out to him
35:43and express our condolences and
35:44our gratitude and say hey,
35:46we're here and he wrote back and he said,
35:49you know,
35:49I'm actually really happy to hear from you.
35:52I talked with my group and
35:54with their permission,
35:55I'm going to share with you.
35:57Email string that we have been
35:59had going around.
36:01He forward this email This is
36:02him writing to his group.
36:03He says, I think of all of you.
36:05Often I've had many chances to use
36:08the coping strategies we learned.
36:09And then one by one he lists every
36:12single one of those resilient
36:14skills and how they helped him.
36:16He goes on interesting Lee.
36:18I feel better as I type this.
36:20I don't have an extensive support network.
36:22It's literally myself and my wife.
36:23This is the only time I've
36:25talked about what I'm feeling.
36:27Thank you all for reading
36:27this and staying in touch and
36:29helping each other through this.
36:34My takeaway, by the way from that
36:36experience with that Dad is 2 things.
36:38One I am not convinced that the
36:41group by itself isn't doing something
36:43'cause clearly it helped this father.
36:46I also think that the cumulative shared
36:48grief of watching another parents
36:50child be ill was something we hadn't
36:53anticipated and so that idea of how do
36:55we support families needs to include?
36:57How do we examine this shared grief
37:00in this shared stress that can
37:02come from a group intervention?
37:05Which leads me to what's next for
37:07PRISM and where we're moving forward.
37:09We have a whole bunch of different
37:11projects in progress,
37:12including several multi site trials
37:14for adolescents and young adults
37:16with advanced cancer or diabetes
37:18in the advanced cancer studies.
37:19We're looking both at the integration
37:21of Advanced care planning, for example,
37:23for teens with incurable cancer.
37:25Can Prism help be a platform for
37:28integrating larger conversations
37:29about goals of care,
37:30and how does it influence anxiety,
37:32depression,
37:32and other mental health outcomes
37:34amongst kids and caregivers who are
37:37receiving bone marrow transplant?
37:38We're doing a dissemination implementation
37:40pilot here at Seattle Children's,
37:42where we're essentially putting the program
37:43Alex to make it publicly available,
37:45and we're trying to see how
37:47different clinical teams use it.
37:49We are adapting their program for
37:51adolescents with chronic pain.
37:52The Pi of that study is at the
37:54Children's Hospital of Philadelphia.
37:56We have an adaptation for patients of
37:58adult with adult congenital heart disease.
38:00So folks who are transitioning from
38:02pediatric to adult care in the
38:04setting of congenital heart disease,
38:06that pie is here at the University
38:08of Washington.
38:09We have a different investigator,
38:10Doctor Crystal Brown who is using
38:12PRISM to help support caregivers who
38:14experienced racism in critical care
38:16units here in the United States.
38:18We have a different investigator,
38:19Amoeba O'Donnell,
38:20who is studying Prism adaptation for
38:22health care workers during the pandemic.
38:24We have preliminary data from that
38:26study which essentially shows that
38:28PRISM compared to usual care for
38:30healthcare workers on the front lines,
38:32improves their burnout and improve
38:33their resilience in significant ways.
38:35And then finally, we have an investigator,
38:37Kiske Smith,
38:38who is translating the program
38:40and implementing it here in the
38:42Seattle Public Schools for kids.
38:44We're schooling at home.
38:45This is for school aged kids who
38:47are really struggling with this new
38:49world that we live in and helping
38:51them to manifest their own resilience
38:53resources early on in their childhood.
38:55Within all of these studies,
38:57we have analysis to evaluate cost
38:58effectiveness, adherence, for example,
39:00to oral chemotherapy caregiver well being,
39:02resource utilization,
39:02optimal delivery strategies.
39:03So is it better to do it all at once,
39:06or is it better to do it one on line?
39:10How can we integrate digital health?
39:12And finally,
39:12we're looking at biomarkers of
39:14stress and resilience and.
39:15Gene expression profiles to sort of,
39:18say,
39:18can we change the the way we
39:21experience physiologic stress and
39:23its downstream effects on our health?
39:28Last, the thing that I think about a lot
39:30these days is how can we get PRISM into the
39:33hands of patients and families who need it.
39:35You can see we are studying this a lot.
39:37It is this huge platform of my research
39:39program and I'm getting to the point where
39:41I just want this thing out there and I'm
39:43trying to figure out how to do that.
39:45This picture is a picture of the original
39:47worksheets that we developed for the
39:49intervention when we first started doing it.
39:51These are the ways that people can
39:53practice the skills between sessions
39:55and when we go to our stakeholders
39:56and we asked him about this.
39:58They say, you know, hey,
39:59this isn't how we learn anymore.
40:01Everything's on line and be
40:02when we really need prism.
40:03It's 2:00 o'clock in the morning
40:05when we wake up and we're having
40:07those negative thoughts in our heads.
40:08I don't want to go get a worksheet,
40:11I want to pick up my smart phone
40:13and have prism at my fingertips.
40:15And so we listened to our stakeholders
40:17and based on their feedback,
40:18we created an app that would help them
40:21practice their skills in real time.
40:24I'm just going to share with you the
40:26quick introductory module of what
40:27the app looks like when a patient
40:29opens it on their phone.
40:30This is imagine the first time you're opening
40:32it and the orientation to the program.
41:15So once folks of how that introduction
41:17and they use the app as a compliment
41:20to the in person coaching that we do,
41:22or the Tele health coaching that we now do,
41:25they can personalize their homepage.
41:27They can upload their goals,
41:28they can sync it with their calendar,
41:31so it sets the little reminders for
41:33things that they have staged as a
41:35way to accomplish that longer goal.
41:37They can upload pictures alot,
41:39Instagram and ways to remember particular
41:41moments of gratitude and so and they
41:43can track their own sense of stress
41:45and resilience within the app and
41:47see how the different modules help.
41:49Alleviate those senses of stress or bolster
41:52those senses of resilience in real time.
41:57So before I close, I have a couple
41:59of final thoughts about resilience.
42:01The first is what we've learned
42:03during the last year of the pandemic.
42:06When we started, I had this
42:08idea that resilience was linear.
42:09I had this idea of that banana graph
42:12that there was a line we would follow
42:14as we marched through our lives,
42:16and I don't think that's true.
42:19I think resilience is actually
42:20something that that exists in phases,
42:22and the first phase is what
42:24I call getting through.
42:25This is where we literally put 1
42:27foot in front of the other where we
42:30literally say I got out of bed today.
42:33It reminds me of that bereaved mom.
42:34I told you about at the beginning of
42:36this talk, the one who said, yeah,
42:38I did get out of bed today and that
42:39makes me pretty darn resilient,
42:41because if it were me and my
42:42childhood childhood just died,
42:43I don't know if I'd be able to do the same.
42:46However, that was ten years ago,
42:48and if I might met her and talk
42:50to her today and she still said,
42:52well, I got into bed today,
42:53then I would worry then I would
42:55say I don't know if you're still
42:57resilient in my mind.
42:58I think you need to do more.
43:01And so the next phase,
43:02if you will,
43:03of how we move through this
43:05experience of resilience,
43:06is when we start to do the work
43:09of harnessing our resources.
43:11This is where we begin to leverage
43:13those individual community and
43:14existential resilience resources.
43:15We start to actually figure
43:18out how do we move forward.
43:21In between getting through
43:22and harnessing resources,
43:23the psychological thing we do is we
43:25start to appraise or assess the situation.
43:28What have I done before?
43:29Who helps me?
43:30How am I going to get through this?
43:33We actually start to articulate in our
43:35own minds whether we know it or not.
43:37What needs to happen for us to
43:39move from just simply getting out
43:41of bed to starting to thrive?
43:45And then the third phase, if you will.
43:48Of this overlapping Venn diagram
43:50is when we look back and learn.
43:52This is when we finally have the
43:54brain space to reflect on what
43:56we learned and what it means.
43:57Sometimes that can be in a day.
44:00Sometimes that can take us years,
44:01but ultimately almost all human
44:04beings will have this capacity to
44:06think about what just happened to
44:08them and what it means to them.
44:10In between harnessing those resources
44:12that active activation of resilience
44:14and when we start to reflect,
44:16we build our identity and I and our
44:19purpose we start to ask ourselves
44:22the question of who we want to be.
44:25And in between getting through
44:26and looking back and learning,
44:27we are appraising the situation again.
44:29What does this mean for us?
44:34Practically. As folks will hear all
44:36of this and then say to themselves,
44:39what am I going to do?
44:40I'm seeing a patient this afternoon.
44:42Here's some thoughts.
44:43First of all, use your palliative
44:45care psychosocial chaplaincy.
44:45Child live any other supportive
44:47care team that you have.
44:48This is their bread and butter.
44:50This is what they do in
44:51their regular assessments.
44:52Leverage that experience and
44:53rely on it as part of your team.
44:58As clinicians, we need to help
45:00families identify their resources
45:01and strengths and their struggles.
45:03We need to promote the first
45:06two and normalize the third.
45:08Just because people are having a hard
45:09time does not mean they are not resilient.
45:11That means they're normal.
45:14Our job is to help them
45:16diversify their portfolios.
45:17Our job is to help them recognize the
45:19things that they already have in their
45:21Arsenal or resilience resources so
45:23they can go from getting through to
45:26starting to harness those resources.
45:29And how I do that? Is this?
45:31I ask about thoughts I'll say.
45:33How do you see your experiences?
45:35That helps me understand their
45:37existential resilience resources.
45:38I ask that actions.
45:39What do you do when things are hard?
45:42What have you done before?
45:43When times have gotten tough?
45:45This helps me identify their
45:46individual resilience, resources.
45:47And finally I ask about supports.
45:49Who supports you?
45:50This is me taking a sort of
45:52categorization and or an inventory of
45:54their social resilience, resources.
45:56And together I can sort of recognize
45:58which of those three buckets
45:59is relatively full,
46:01or which is relatively empty.
46:02And I can help them articulate
46:04those resources they'll need.
46:08Last I'm going to close with
46:10advice from Daniel Maher.
46:11Who said you have to work sometimes
46:14to be happy to move past the hard?
46:16The sad the scary. We all do it.
46:21But maybe you need help sometimes.
46:23Maybe you need a little bit of
46:25learning or a little bit of strength,
46:27or remembering what matters
46:28or a little after.
46:30Poor little love.
46:32Figure out what you need and hold on.
46:35But please,
46:36whatever you do live the time you
46:38have with meaning and purpose.
46:45I want to thank the many members of the
46:47palliative care and Resilience Lab,
46:48in particular, Joy C.
46:50Fraser, who is my research partner
46:51and the Co creator of Prism.
46:53We have many mentors,
46:54advisors and collaborators who
46:55have helped us along the way,
46:57as well as multiple funders that
46:58I'd like to thank and thank you to
47:01all of you for being here today.
47:02I'm going to stop sharing my
47:04slides so that we can have some
47:06time for questions and answers.
47:07Appreciate you all.
47:08Thank you.
47:15Abby, thank you so much for such
47:17a powerful and inspiring talk.
47:19While we're waiting for folks to
47:21pop their questions into the chat,
47:23I thought maybe we could start out
47:26with a couple of my questions.
47:29Uhm, what sorts of obstacles
47:31early on did you encounter?
47:33Or you know where?
47:34There are people who were naysayers
47:37or disbelievers in this approach?
47:39And how did you?
47:40How did you overcome some of those
47:42obstacles or address people's concerns?
47:46Oh gosh, this is such a good
47:48question pressing it, I think.
47:51Philosophically,
47:51I guess I have two answers.
47:53One is, believe in what you're doing.
47:56So I one of the first people I talked
47:58to here in Seattle about this idea is
48:01someone who I really respect and admire.
48:03And she said I don't think
48:05resilience is changeable.
48:06I just don't think that that's
48:08going to be a thing.
48:10I don't think this is a good idea,
48:13and as a young.
48:14Faculty member I was devastated,
48:16but I felt like my idea still needed some.
48:19I don't know unpacking so I moved
48:21around to find mentors who would
48:23support me and I think for early
48:25career faculty that piece of advice
48:27is really necessary that you need
48:29someone who believes in you and
48:31you need people who will also help
48:33you find holes in your project.
48:35Which leads me to the next thing you know.
48:39Science is defined by failures
48:40we learn from those failures.
48:42And that's maybe one of the
48:43messages of resilience too.
48:44But you need to be around
48:46people who will push you.
48:48Who will help challenge you.
48:49Who will help you think about the ways
48:51that something might or might not work,
48:53and so that same person who
48:55made me question it is somebody
48:57who I now really rely on.
48:59When I have an idea 'cause I know
49:01she's going to be like Nope,
49:03still a bad idea.
49:04Abby and that helps me think
49:06around all of the barriers so that
49:08I can continue to move forward.
49:11The last thing I think though
49:13about all of this is.
49:14Finding meaning and purpose in the work
49:16that we do is critically important.
49:18As clinicians as scientists would
49:20you have to have the passion and the
49:22belief that what you were doing matters?
49:24And for me this is bad for other
49:26people that we can be taking
49:28care of a patient or writing a
49:30paper or mentoring or teaching.
49:32But the thing that we all need to
49:34do is to figure out what brings
49:36us value in our lives and how
49:38can we continue to champion that.
49:46Thanks so much. I'm still waiting
49:48for anyone who has questions.
49:50In the Meanwhile I of course have so many.
49:55One thing I was wondering
49:57about in terms of scalability.
50:00So what do you say now with this
50:03robust intervention that now
50:05has a mobile option as well?
50:08What have you said to folks at
50:10various institutions who may be
50:12interested in bringing a similar
50:14intervention to their institution?
50:19Soon.
50:22Two things I want.
50:24I want prism out there at like.
50:27I just think that it has potential
50:29and I would welcome anybody who wants
50:31to help me figure out how to do that.
50:34And as folks in this audience will know.
50:38Doing anything takes
50:39resources and money and time,
50:40and so one of the things we have
50:43learned in this pilot study that
50:44we're doing here in Seattle is,
50:46even if we make it available,
50:48people don't use it if they don't have
50:50the human resources to deliver it.
50:52So right now,
50:53it's just it's designed to be
50:55an in person coaching program
50:56because I think that that matters.
50:58I think that human connection
51:00is really necessary.
51:03But we're learning that that
51:04might be a huge huge barrier,
51:06and so the next study where we're
51:08designing right now is in fact trying
51:10to ask the question that you just asked
51:12how much digital can we get away with?
51:14How much can we get away with taking
51:16away the in person component?
51:18Will that compromise the
51:19efficacy of the program?
51:20I think the answer is probably yes,
51:22but it turns out funders and other
51:24organizations need us to prove that,
51:25and so that's what we're working on now.
51:28And I'll just say, you know,
51:30imagine the number of little apps
51:31that you have on your phone that
51:33are self help or mental health or
51:35whatever other programs you have.
51:36And most of us don't open them at all.
51:39And when we do we open them for a
51:41few weeks and then we stop and that
51:43to me is why prison works better
51:45because there is a human interaction
51:47you're engaging with somebody who
51:48cares about you who listens to you,
51:50who coaches you.
51:51And so I worry a little bit about moving
51:53things purely to digital health without
51:55that degree of human interaction,
51:56especially for teens and young adults.
51:59Absolutely. How did you adapt
52:02during the during the pandemic?
52:05Wait, so we switched to the whole thing.
52:08We used to go as I said to the
52:10patient's bedside and we would sit
52:12next to somebody and coach with them.
52:14And then we held the program for
52:16about six months as many in the world
52:18did when when we all kind of had to
52:21figure out how this new normal would
52:23work and when we came back in about
52:25maybe a little over a year ago.
52:27Last summer, we started delivering
52:29the program purely via Tele Health and
52:31what was super fascinating is that
52:33especially for teens and young adults,
52:34maybe because they're more.
52:36Fluent and savvy and things like
52:38FaceTime and digital ways of connecting.
52:40Anyway, they seem to like it better this way.
52:43They seem to feel like this is almost
52:45a safer way for them to be vulnerable.
52:47They can sort of move back from
52:50the screen if they need to.
52:51They can engage in a way that is.
52:55Psychologically,
52:56more appropriate for them to my surprise.
52:58And so now I think moving forward
52:59we will only deliver the health.
53:01The program via Tele health.
53:03Unless somebody asks us to do otherwise,
53:05and we'll see how it goes.
53:10When you were starting out
53:13with developing Prism,
53:14did you start out restricting it
53:17primarily to adolescent young adult
53:19patients with advanced cancer?
53:21Or were would you include patients at
53:25any point in their character directory?
53:28Yeah, the first program we designed the
53:31pilot study the Phase two pilot City
53:33that I shared was for either people
53:36with brand new cancer or people who
53:38had just record and the reason was
53:41we believe that resilience coaching
53:43is necessary during times of stress.
53:45So if the construct is Ono right now,
53:48my life feels hard. I need help.
53:50We wanted to identify those periods of
53:53a patient's cancer experience where
53:55they would be receiving chemotherapy
53:56and in the hospital and needing
53:59some additional support.
54:00And so in that first study
54:02of roughly 92 people,
54:033/4 of them were teens with brand new
54:05cancers and then about 1/4 of them work.
54:08Folks who had been well and
54:09then had had a recurrence.
54:11And when we tried to look at the
54:13differences between the groups,
54:14we couldn't find anything that
54:16said prison work better or worse.
54:18If you were new to cancer or really
54:20experienced with your cancer,
54:21the thing that we did notice that
54:23was different in the patients
54:24with advanced cancer.
54:25And then this was replicated
54:27amongst teens with CF is hey,
54:29Prism just taught me all this stuff about
54:31how to identify what matters to me and why.
54:34My goals are and now I need help
54:36talking to my family about this.
54:38And so as I sort of quickly
54:40described one of our larger grants
54:42right now is building on that for
54:44patients specifically with advanced
54:46an incurable cancer.
54:47I'm saying,
54:48can we teach these four skills and then
54:50build on that to integrate advanced care
54:53planning for teens and young adults?
54:55And that's important because maybe
54:5620% of teens and young adults in
54:59the United States actually fill out
55:01advance care planning documents.
55:02Fewer than that are involved in care
55:04decisions about their ongoing medical
55:06care and end of life plans and so.
55:09The idea was maybe PRISM can be a
55:11safer on tray into some of those
55:13really hard conversations that are so
55:16important at the end of the patient's life.
55:18Absolutely OK.
55:19We have a couple of hands race so
55:21I'm going to let Jeffrey Towns
55:23and go ahead and unmute yourself.
55:32Hopefully he can leave.
55:43Alright, well, while we're waiting
55:45for Doctor Townsend Amanda
55:47Gorbaty near you able to unmute.
56:00Renee, I may need your help.
56:12Yeah, I just mark this a webinar
56:14so the attendees can send in
56:16something via the chat. Thanks, mark.
56:24Alright, so so Amanda and Jeffrey.
56:25If you want to put your
56:27questions into the chat,
56:28will be sure to try to get to them.
56:47Overweighting Abby.
56:48I wondered if you might be able
56:50to share how you thought about
56:52measuring some of those longer
56:54term psychological outcomes,
56:56or in terms of outcomes like.
56:59Job attainment or long term mental health.
57:04Yeah, oh, such an apropos question
57:06we're looking at that right now.
57:08So of those 92 patients that we
57:10had in that first pilot trial.
57:13So now we're talking about a small study
57:15because the other big studies are ongoing.
57:18But of those 92 patients?
57:22A little less than a third
57:2430% have died since then.
57:26In the two years that followed that project,
57:29and that is across both advanced cancer
57:31and new cancer patients in equal measure.
57:35So we're down to a little over
57:3750 folks who we can still follow,
57:39and it's harder to gauge long term outcomes
57:42in a smaller and smaller sample size.
57:44That said, what we're noticing,
57:46which is really interesting to me is,
57:48and this is like an ongoing
57:50work in progress data,
57:52so forgive me 'cause it might
57:54change when we finally publish it.
57:56But the initial analysis that we're
57:58looking at right now suggests.
58:01Two really interesting things.
58:03First,
58:04people who responded to PRISM in
58:06that beginning six months phase
58:07have a long term protection of it.
58:10So if you if you were in the
58:12group who got prison.
58:16Khalaj Ikle benefit seems
58:18to indoor two years later,
58:20so that sense of new resilience.
58:23Hope for the future and ability to
58:26find meaning and benefit those indoor.
58:29What is more interesting,
58:30in a different way is that while
58:33distress immediately improved,
58:34and as I showed you,
58:36depression risk went way down.
58:38That risk of endurable,
58:40non negative psychological
58:41outcome doesn't seem to persist,
58:43and So what I mean by that is
58:45people were no longer distress
58:47during their immediate cancer
58:49experience when they got PRISM,
58:51but overtime there's a regression
58:53to the mean between usual Karen
58:55Prism participants with respect
58:57to their overall distress.
58:59And the combination of those
59:01things tells me two things.
59:02Number one,
59:03we do want to alleviate negative
59:05pathology in the moment,
59:06so we do want to alleviate
59:09distress in real time.
59:10But the long term benefit
59:11of PRISM might be that that
59:13positive psychological gain is an
59:15inoculation for later well being.
59:17And what I mean by that is you
59:20want somebody's hope for the
59:22future to be the thing that lasts.
59:24I care less that they are not
59:26distressed overtime as much as that
59:28they maintain that positive outlook,
59:30because I believe that when
59:32the next stressor comes.
59:34That positive psychological
59:35benefit that they have gained those
59:37resilience resources that they have
59:39learned will help them deal with
59:41whatever is the future stressor,
59:43and so this is the long way of saying
59:45that I think what prison does is it
59:48boosts long term positive psychology,
59:50but the protection from negative
59:52pathology is more in real time
59:54and we probably need measures to
59:57address people's support to Puerto
59:58Kearneys right in times of stress
01:00:00and then help them figure out
01:00:02their way as they move forward.
01:00:06Absolutely. So we have one last question.
01:00:08I received this message by text because
01:00:11it looks like people aren't able to
01:00:14actually put messages into the chat,
01:00:16so I apologize so this this question
01:00:18is from Amanda Garber Teeny.
01:00:21She is a social worker
01:00:22in in pediatric oncology.
01:00:24She said she's traded a few emails with
01:00:26you so she's focused on adolescents,
01:00:29young adults and currently uses many prism
01:00:32techniques and models with her patients at.
01:00:35At Yale, so she was wondering if
01:00:37it would be possible to to have
01:00:39access to the app or other PRISM
01:00:41resources for her patients.
01:00:43Yes, so great question, Amanda.
01:00:45And thank you for asking it.
01:00:48The answer is yes and we as I said,
01:00:50we really do want to share this
01:00:52and we have ways to make be
01:00:54able to sustain the program.
01:00:56So we unfortunately right now
01:00:57cannot give it out for free.
01:00:59But please email me and I'm
01:01:01happy to chat with you about
01:01:04how we can provide the program.
01:01:06Cost effective way is we can
01:01:07until we can figure out how to
01:01:09publicly just make it available.
01:01:13Alright, well thank you so much
01:01:15Doctor Rosenberg for being here with
01:01:17us and for sharing your insights.
01:01:19And thanks to everyone who
01:01:20joined the webinar today.