UNDERSTANDING THE MEDICAL JOURNEY OF THE...

1 The Caregiver Factor / Rx4good

UNDERSTANDING THE MEDICAL JOURNEY OF THE CAREGIVER AND THEIR INFORMATION AND SUPPORT NEEDS


Introduction

The importance of the role of voluntary caregivers in the day-to-day lives of patients with chronic conditions and/or disability is widely recognized. There has been a great deal of research conducted on the ways in which caregivers provide support on a day-to-day basis, as well as the challenges – and joys! – of the role.

Our goal for this research is to shine a light on a very specific aspect of caregiving – the role in medical decision-making on behalf of their patient. Specifically, we explore the caregiver journey as they:

• First step into the role

• Seek to further their knowledge about their patient’s condition

• Discuss treatment priorities, goals, and options with their patient and physicians

• Anticipate future needs


Alagille Syndrome Alliance

Alkermes

Alliance for C linical Research Excellence and Safety

(ACRES)

American Cancer Society

American Chronic Pain Association

American Heart Association

American Medical W omen’s Association

American Syringomyelia and Chiari Alliance Project

Amgen

Angelman Biomarkers and Outcome Measures

Alliance

Cancer Support Community

CancerCareCaregiver Action Network

Charlotte and Gwenyth Gray Foundation to Cure

Batten Disease

Cholangiocarcinoma Foundation

Colorectal Cancer Alliance

Critical Mass

CurePSP

DC Outreach

EMD Serono

The End Brain Cancer Initiative

Enzyvant

Epilepsy Foundation

Evans Syndrome Foundation

Family Voices

First Descents

Food Allergic Adults Support Group

g6pd Deficiency Foundation

Global Genes

HealthyW omen.org

Hereditary Neuropathy Foundation (HNF Cure)

Hermansky-Pudlak Syndrome Network

Horizon Pharma

Ionis Patient Advocacy

Acknowledgements to Partners and Advisors

Kite Pharma

Les Turner ALS Foundation

Leukemia & Lymphoma Society

Luck Fupus

Medical Education Institute

Mended Hearts

Mended Little Hearts

Merck

MS Focus

National Alliance for Caregiving

National Alliance on Mental Illness

National Blood Clot Alliance

National Osteoporosis Foundation

National Register of Health Service Psychologists

National Stroke Association

NTMinfo

Parent Project Muscular Dystrophy

Parkinson's Resource Organization

Patvocates

Patient Empowerment Network (Powerful Patients)

PTC Bio

RUN - Rare & Undiagnosed Network

Sage Therapeutics

Santhera

Sharsheret

Short Bowel Syndrome Foundation

Sofia Sees Hope

Spark

Teen Cancer America

Tesaro

The Samfund

Ulman Cancer Fund for Young Adults

Ultragenyx

US Pain Foundation

Vestibular D isorders Association

W ilsons Disease Association

The survey was developed and distributed in partnership with 70 organizations. They have our heartfelt gratitude for their guidance and assistance in this endeavor.


The findings presented in this report are based on responses to a 49-question (15-20 m inute) online survey. The survey was developed in close consultation with our partners and focused primarily on caregivers’ role in medical

decision-making on behalf of/in partnership with their care recipient.

To ensure a wide representation of U.S. caregivers, a variety of online recruitment methods were used:

• Distribution of the survey link to partner organizations’ membership (email, newsletters, social media)

• Outreach to diverse disease and caregiver groups on social media

• Targeted Facebook advertisements

Caregivers were screened to meet the following criteria:

• U.S. resident

• Age 18+

• Provided voluntary care to an adult or child w ith a chronic condition in the last 12 months

• Are involved in medical decisions/treatment choices for their care recipient

The survey received a total of 1,336 responses; 633 caregivers qualified for and completed the survey (47% completion rate). Survey participation was entirely voluntary and caregivers were not offered an incentive for participation or completion.

Survey Methodology

1 Responded “yes” to one of the following questions: At any time in the last 12 months, have you provided unpaid care to an adult relative or friend to help them take care of themselves? This may include helping with personal needs or household chores. It might be managing a person's finances, arranging for outside services,or visiting regularly to see how they are doing. This adult need not live with you. In the last 12 months, have you provided unpaid care to anychild under the age of 18 because of a medical, behavioral, or other condition or disability? This kind of unpaid care is more than the normalcare required for a child of that age. This could include care for an ongoing medical condition, a serious short-term condition, emotional orbehavioral problems, or developmental problems.

2 Based on the following question:To what extent are you involved in discussions about medical choices and/or treatment decisions the person you care for? Please choose oneresponse. Scale: Very involved, Somewhat involved, Not very involved, Not at all involved. Caregivers who are very, somewhat, or not veryinvolved were invited to continue with the survey.


Caregivers who completed the survey are primarily women (consistent w ith other research on the subject) and age 40-69. Many are married and are highly educated; slightly fewer than half are employed.

Sample Characteristics

Caregiver CharacteristicsTotal Total

Sample Size 633 Sample Size 633

Age Race/ethnicity

18-29 2% W hite or Caucasian 81%

30-39 7% Black or African-American 3%

40-49 15% Hispanic, Latino, or Spanish 9%

50-59 30% Asian (includes Asian Indian) 2%

60-69 31% Other 1%

70-79 14% Prefer not to say 4%

80+ 2% Geography

Mean 59.0 Northeast 20%

Gender Midwest 18%

Female 82% South 33%

Male 18% W est 22%

% Married/unmarried couple living together 78% US Territories 7%

% College degree + 79%

% Employed 48%


The majority of survey participants are providing care for their spouse or parent. On average, they have been involved in medical decisions with/on behalf of their care recipient for 9 years; most (91%) report that they are

currently very involved in this capacity.

Sample Characteristics (continued)

Relationship Care Recipient CharacteristicsTotal Total

Sample Size n=633 Sample Size n=633

Care recipient relationship to caregiver Gender

Spouse / Significant other / Partner 52% Female 41%

Mother / Father 26% Male 59%

Child or stepchild 9% Age

Adult child 6% 0-9 3%

Sibling / Sibling in-law 2% 10-19 5%

Mother in-law / Father in-law 1% 20-29 6%

Other 3% 30-39 4%

Caregiver and recipient currently live in same HH

74%40-49 6%

Years of caregiver involvement with medical decisions/treatment choices 50-59 13%

Less than 1 year 6% 60-69 21%

Between 1 and 2 years 14% 70-79 19%

Between 3 and 5 years 25% 80+ 23%

Between 6 and 10 years 24% Mean 62.6

Between 11 and 20 years 20%

More than 20 years 11%

Mean 9.1

Caregiver is very involved in medical decisions

91%


By design, the survey reached people who are providing care and participating in medical decisions across a wide variety of conditions. The top mentions are shown in the table below 3.

Sample Characteristics (continued)

3 Data have not been adjusted or weighted by condition or any other characteristic as sizing data for caregivers who meet the survey requirement is not available.

Condition(s) That Have the Most Impact on Care RecipientTotal Total

Sample Size 633 Sample Size 633

Stroke, Trans Ischemic Attack (TIA), or post-stroke symptoms

39% Genetic and Rare Disease 3%

Alzheimer’s disease, mild cognitive impairment or dementia

20% Asthma 3%

Chronic Pain 14% Gastric Disease 3%

Heart disease, including heart failure, post-heart attack care

14% Parkinson’s disease 3%

Blood cancers such as Leukemia, Lymphoma, Myeloma

13% Autism or Asperger’s 2%

Mental health, including depression, anxiety disorders, bipolar disorder, schizophrenia, etc.

12% Epilepsy 2%

Diabetes or related complications 12% Multiple Sclerosis 2%

General age-related issues / elder care 11% Substance Use Disorders 2%

Cancer, other than blood cancers 9% Cholangiocarcinoma 1%

Muscular Dystrophy, Duchenne Muscular Dystrophy

7% Developmental disorder 1%

Kidney disease 6% Brain injury/Traumatic brain injury/TBI 1%

Osteoporosis 6% Vestibular disorder/vertigo/balance 1%

Bowel disorders 6% Cerebral Palsy 1%

Disability due to trauma/accident or neuromuscular disease

5% Migraine 1%

Autoimmune disease (lupus, rheumatoid arthritis) 5%Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s

Disease)1%

Seizure disorder 5% Hereditary Neuropathy 1%

Chronic Obstructive Pulmonary Disease (COPD) or Emphysema

4% Aphasia 1%

Fractured bones 4%


The caregiver journey often begins suddenly, w ith a medical emergency or a new diagnosis that leads to new care needs. More than two-thirds of caregivers report that they stepped into their role in these circumstances as opposed

to a more gradual/progressive transition.

Stepping into the caregiver role

Please think back to the time when it first became apparent that you would be playing a role in caregiving. Which of the following best describes that situation?

Sample Size 632

A medical emergency or crisis led to new care needs 45%

A new diagnosis led to new care needs 24%

Condition had progressed to the point where additional care was needed 20%

Care needs were already known, but I was stepping into a new role 10%

Something else 1%

When you first became involved as a caregiver, how confident were you that you had all the information you needed to make the necessary care decisions or treatment choices?

Sample Size

Not confident at all

1 2 3 4

Extremely confident

5

631 33% 15% 24% 18% 10%

Bottom 2 (1-2) Top 2 (4-5)

48% 28%

At this point in time, when the patient’s care needs first become apparent, many caregivers are not fully prepared for their role in medical decisions. Only one-quarter (28%) report that they were confident that they had all of the

information they needed to make the necessary care decisions and treatment choices.


W hile actively seeking more information about their care recipient’s conditions, medications and treatments, few could claim expertise in currently-available options – and clinical trials were not on the radar for many at this time.

Developing knowledge and confidence

Still thinking about when you first became involved as a caregiver, please indicate the degree to which you agree or disagree with the following statements.

Scale: Strongly disagree, Somewhat disagree, Somewhat agree, Strongly agree

Sample Size

Strongly/ Somewhat

Agree

I was frequently searching for more information about their medical condition(s), medications and treatment options

631 89%

I considered myself to be an expert on their medical condition(s), medications and treatment options

631 40%

I was frequently searching for more information about clinical trials and drugs in development

628 57%

I considered myself to be an expert on clinical trial options and drugs in development for them

631 16%

Survey Results


Doctors and other healthcare professionals play an important role in helping caregivers learn about care options and treatment decisions once their role becomes apparent. Many caregivers also conduct their own research through

health information websites, medical literature, networking with friends/fam ily, and online patient resources (including advocacy and support groups).


Still thinking about the time when it became apparent that you would be playing a role in caregiving...Where did you turn to learn more about the available care options and treatment choices? Multiple responses permitted

Sample size 631

My loved one’s doctor(s) or other healthcare professionals 76%

Health information websites (such as W ebMD) 51%

Medical journal or medical literature 39%

Friends or fam ily members 37%

Patient advocacy organizations websites 37%

Government websites (CDC, NIH, W HO or local health department) 25%

Support groups 25%

My own doctor(s) or other healthcare professionals 23%

Online community groups specifically for caregivers 23%

My loved one 22%

Social media (Facebook, Twitter, YouTube, Reddit) 17%

Educational event 13%

Online bloggers who write about health 13%

W ikipedia/Online Encyclopedia 12%

Information from insurance companies 12%

Traditional media (newspapers, magazines, TV, radio) 12%

Voluntary health organizations 8%

Pharmaceutical company websites 5%

Condition organizations (advocacy, agencies, foundations) 1%

Nurses/other HCPs/Social workers/hospice 1%

Previous experience 1%

Aging organizations (advocacy, agencies, foundations) 1%

Other 2%

None 4%

About one-half (52%) of caregivers report that their information sources have changed in the time since they first stepped into their role. Those who have been providing care for many years report that the internet has given them

access to much more information than they had at the beginning. Many caregivers, regardless of tenure, have expanded their horizons to include new sources of information over the years. However, others have narrowed their focus to a small number of trusted sources. Strategies may differ, but the internet plays a very large part in helping caregivers stay current on their patient’s condition.

Survey Results


Today, the majority of caregivers feel confident that they have the information they need to make medical decisions

for or w ith the person they care for. Nearly two-thirds (65%) feel this way about care decisions/treatment choices for

symptom management; slightly lower for disease management or end of life/advanced illness.


Today, how confident are you that you have all of the information you need to make the necessary care decisions or treatment choices for…

Sample Size

Not confident

at all 1 2 3 4

Extremely confident

5Top 2(4-5)

Symptom management 630 5% 7% 23% 43% 22% 65%

Disease management to

prevent or delay worsening of existing condition

630 7% 9% 27% 38% 18% 57%

End of life / advanced illness

631 14% 12% 21% 31% 23% 53%

Survey Results


Caregivers continue to search for more information about their care recipient’s condition even while many feel they’ve attained “expert” status. Importantly, a majority of caregivers search for information about clinical trials now

as they did at the beginning of their journey (though they do not consider themselves an expert in this area).


Please indicate the degree to which you agree or disagree with the following statements.

Scale: Strongly disagree, Somewhat disagree, Somewhat agree, Strongly agreeThinking about when you first became

involved as a caregiver… Today…

Sample Size

Strongly/ Somewhat

Agree

Strongly/ Somewhat

AgreeSample

Size

I was frequently searching for more information about their

medical condition(s), medications and treatment

options

631 89% 79% 632

I am frequently searching for more information about their medical condition(s), medications and treatment options

I considered myself to be an expert on their medical

condition(s), medications and treatment options

631 40% 61% 630

I consider myself to be an expert on their medical condition(s), medications and treatment options

I was frequently searching for more information about

clinical trials and drugs in development

628 57% 50% 631

I am frequently searching for more information about clinical trials and drugs in development

I considered myself to be an expert on clinical trial options and drugs in

development for them

631 16% 22% 630

I consider myself to be an expert on clinical trial options and drugs in development for them

Survey Results


Caregivers are highly involved in discussions about medical choices and/or treatment decisions for (and with) their care recipient. W hile those who are not involved in these discussions at all were excluded from the survey, it is

noteworthy that 91% of caregivers report that they are “very” involved and more than half report an increasing role in medical decisions over the past year.

Developing relationships with healthcare providers

As part of their role in treatment decisions, caregivers accompanied their care recipient to healthcare providers an average of 17 times over the past year (excluding hospital/emergency room visits). This underscores the importance

of the partnership between caregivers and healthcare providers at the beginning of the caregiver journey, and also on an ongoing basis.

To what extent are you involved in discussions about medical choices and/or treatment decisions the person you care for?

Sample Size 633

Very involved 91%

Somewhat involved 7%

Not very involved 1%

Over the past year or so, how has your role in medical and/or day-to-day support and decision making changed (if at all)?

Sample Size 630

Increased significantly 40%

Increased a little 19%

No change 26%

Decreased a little 10%

Decreased significantly 4%

In the past year, how many times have you visited a doctor or healthcare professional with the person you care for – excluding trips to the hospital or emergency room? Your best estimate is fine.

Sample Size 629

0 4%

1-4 21%

5-9 22%

10-14 13%

15-19 8%

20-24 9%

25-29 3%

30+ 19%

Mean 17.2

Survey Results


Caregivers not only participate in a large number of healthcare provider visits, they also need to manage appointments and information across a number of different types of providers. On average, care recipients have seen

an average of 6 different types of healthcare professionals over the past 2 years.


In the past two years, which of the following types of healthcare professionals have seen the person you care for in any setting – including office visits, hospital stays, etc.?

Multiple responses permitted; top mentions shownSample Size 629

Primary care doctor 95%

Physical therapist 58%

Neurologist 53%

Cardiologist 47%

Occupational therapist 41%

Ophthalmologist 41%

Oncologist 24%

Psychologist or Psychiatrist 24%

Urologist 24%

Gastroenterologist 22%

Endocrinologist 20%

Hematologist 20%

Pulmonologist 19%

Orthopedist 17%

Nephrologist 14%

ENT, Otolaryngologist 14%

Gynecologist 10%

Survey Results


Crisis care adds another layer of complexity to caregivers’ role in treatment decisions. Over and above office visits, caregivers need to be on point for crisis care (ER or ICU) on behalf of their care recipient.


In the past year, how many times has the person you care for needed crisis or emergency care – for example, a trip to the hospital emergency room or intensive care unit? Your best estimate is fine.

Sample Size 633

0 36%

1 22%

2 17%

3 10%

4 5%

5+ 10%

Mean 2.0

Despite the high number of HCPs and visits, caregivers generally agree that the providers are working in concert w ith each other and with insurance companies. Few (24%) report difficulty w ith conflicting diagnoses.

On the scale below, please indicate how much you agree or disagree with the following statements about the healthcare professionals of the person you care for.


Sample Size

Strongly/ Somewhat

Agree

The healthcare professionals of my care recipient all have an up-to-date list of his/her medications

627 84%

The healthcare professionals effectively coordinate care with the insurance company 626 71%

The healthcare professionals of my care recipient all use electronic health records to track their care

627 69%

The healthcare professionals' diagnoses or recommendations about my care recipient conflict w ith each other

628 24%

Survey Results


There is room for HCPs to strengthen their relationships with caregivers. One-half (54%) of caregivers feel that

HCPs need to be rem inded of the patient’s conditions that may fall outside of their specialty, and one-third (38%) feel

that they are not receiving enough information from HCPs.


On the scale below, please indicate how much you agree or disagree with the following statements about the healthcare professionals of the person you care for.Scale: Strongly disagree, Somewhat disagree, Somewhat agree, Strongly agree

Sample Size

Strongly/ Somewhat

Agree

I often need to rem ind healthcare professionals of the other health conditions affecting

my care recipient625 54%

Healthcare professionals don't provide me with enough information about the condition

of my care recipient628 38%

Survey Results


Communication appears to be much stronger with the care recipient’s primary doctor than with the full spectrum of HCPs. Caregivers report a strong and respectful partnership with this primary doctor; the doctor listens closely to

patient and caregiver concerns, displays understanding and sympathy to both parties, and is able to offer easily understood explanations and information.


Survey Results

Please indicate how much you agree with the following statements about the physician who is most knowledgeable about your care recipient.


Sample Size

Strongly/ Somewhat

Agree

Is sympathetic to the needs of my care recipient 626 91%

Describes the condition of my care recipient accurately and clearly 626 88%

Listens carefully to what I have to say 624 88%

Respects my assessments of my care recipient 623 87%

Listens carefully to what my care recipient has to say 621 86%

Treats me like a partner in care decisions 627 85%

Treats my care recipient like a partner in care decisions 620 84%

Explains things in terms that we can easily understand 623 82%

Allows me to share my questions and concerns privately, one-on-one if needed 622 70%

Is sympathetic to my needs as a caregiver 623 67%

Relies on his/her nurse, nurse practitioner or other medical professional for communicating with us

623 37%

Doesn't have time to explain things to us 620 18%

Often dism isses what I have to say 625 13%

Listens to other fam ily members more than they listen to me 619 6%


Caregiver knowledge strengthens the partnership with the care recipient’s primary doctor. Those who have developed expertise in their care recipient’s condition are more readily able to understand and digest information

from the doctor, and in turn are able to communicate their own observations in a way that fosters mutual respect.


Survey Results

Please indicate how much you agree with the following statements about the physician who is most knowledgeable about your care recipient. % Strongly agree with statements


Am ong caregivers w ho are…

The doctor who is most knowledgeable about my care recipient... Not Expert Expert

Sample Size 380 243

Explains things in terms that we can easily understand 57% 74%

Sample Size 381 246

Treats me like a partner in care decisions 55% 70%

Sample Size 381 245

Describes the condition of my care recipient accurately and clearly 56% 67%

Sample Size 382 241

Respects my assessments of my care recipient 51% 67%

* Expert = Strongly/somewhat agree with statement: “I consider myself to be an expert on their medical condition(s), medications and treatment options”. Not Expert = Strongly/somewhat disagree with same statement.


By a large margin, caregivers’ top consideration in care and treatment options is maintaining or improving their care recipient’s quality of life. Beyond this, safety, extension of life/health, and maxim izing their care recipient’s

independence are top priorities.

Importantly, the care recipient’s needs are always at the forefront. Consideration for their own stress level and lessening the burden of their caregiving responsibilities are ranked at the bottom of the list.

Setting care priorities and working in partnership

Survey Results

We would like to know what factors you personally consider when deciding on care and treatment options for your care recipient. Please rank order the items below by placing a “1” next to the one that is the most important, a “2” next to the second most important factor, etc.

Sample Size

% ranked #1/#2, #3

Maintaining or improving their quality of life 635 68%

Keeping them safe from injury due to falls/accidents/household m ishaps 635 49%

Extending their life and health for as long as possible 635 41%

Maintaining or improving their ability to care for them self and maxim izing independence 635 39%

Ensure care/treatment preferences are followed 635 26%

Managing costs of care (making sure there is enough money to continue care) 635 22%

Avoiding or delaying the need for residential care (or more advanced care) 635 16%

Avoiding or delaying the need for surgery or other medical procedures 635 14%

Reducing my stress and anxiety levels 635 10%

Reducing my own caregiving burden 635 9%

Finding care for them as they become an adult 635 4%

Are you and the person you care for in agreement with these care priorities?Sample Size 630

Yes 53%

Sometimes yes, sometimes no 36%

No 2%

Not applicable 9%

Caregivers and their care recipients are often in agreement on these treatment priorities.


W hile care decisions can put stress on both the caregiver and the relationship, very few feel that their care recipient is actively fighting against them.

Setting care priorities and working in partnership

Survey Results

W hen conflicts do arise, caregivers discuss options and pros/cons with the care recipient (when the recipient is capable of participating), and conversations may be revisited several times before consensus is reached. Some

caregivers rely on the doctor to move the conversation forward; some call on other fam ily members for reinforcement.

Caregivers report general agreement on care decisions amongst all those who share in the role, yet such decisions can put stress on fam ily relationships.

On the scale below, please indicate the degree to which you agree or disagree with the following statements.


Sample Size

Strongly/ Somewhat

Agree

Care decisions put a great deal of stress on me 621 80%

Care decisions put a great deal of stress on my relationship with the person I care for 621 49%

W hen it comes to care decisions, the person I care for fights me every step of the way 623 17%

On the scale below, please indicate the degree to which you agree or disagree with the following statements.


Sample Size

Strongly/ Somewhat

Agree

For the most part, all of us who share the role of caregiver are in agreement on care decisions

618 83%

Care decisions put a great deal of stress on fam ily relationships 620 68%

I wish we could get everyone involved in care decisions to agree 608 56%

W hen it comes to care decisions, I feel alone in decision-making 624 48%


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