Research Presented At Drug Information Association (DIA) Meeting In Boston Shows Caregivers Play Major Role In Medical Decision-Making
BOSTON, June 28, 2018 /PRNewswire/ -- Findings from a recent online survey conducted by Rx4good in collaboration with 70 leading organizations, show that caregivers play a central and multi-dimensional role in researching, managing and participating in the medical care decisions of their loved ones.
According to the results, presented today as part of a panel discussion: "Beyond Adult Patients, Untapped Advisors in Clinical Development" at the DIA meeting, 91% of caregivers report being "very involved" in medical choices and/or treatment decisions, participating in an average of 17 doctor visits per year and accompanying their care recipient to see an average of six different healthcare providers in the past two years.
"Much is already understood about the challenges and burdens of caregivers," said Ann Moravick, President of Rx4good, "but until now, little was known about the extent of their role as medical decision-makers, including the precipitating factors in taking on the role of caregiver, their information-seeking priorities and habits or their engagement with healthcare practitioners. This research shows that caregivers are medical understudies, thrust into their role unprepared while learning continuously so they can be a true partner with their care recipient and health professionals."
"Sometimes we see the word 'informal' to describe the family caregiver, but as this research shows, there's nothing informal about the type of care unpaid family members and friends can provide," said C. Grace Whiting, J.D., President and CEO of the National Alliance for Caregiving. "Family caregivers are truly partners in care and should be integrated into models of care delivery. Shared decision-making should include not just the patient, but the family decision-makers as well."
Among the research's key findings:
-- Forty-three percent of caregivers stepped into their role as a result of
a medical emergency, 24% as a result of a new diagnosis and 20% as their
care recipient's condition progressed. As a result, most are unprepared
for the role and lack confidence in the beginning on how to care for a
loved one with a medical condition.
-- The caregiver/healthcare provider relationship is strong and based on
trust. Eighty-eight percent of caregivers said doctors listen carefully
to what they have to say, 87% say doctors respect their assessment of
their care recipient and 85% say doctors treat them as a partner in care
decisions. Caregivers who are more confident in their role have an even
better relationship with their care recipient's physician - speaking to
the need for helping caregivers with information and support as they
take on the role.
-- Top priorities of caregivers include: maintaining or improving quality
of life of their loved one (68%), keeping their loved one safe from
injury from falls, accidents or other mishaps (49%) and extending the
life and health of their care recipient (41%). In contrast, caregiver
stresses and quality of life take on a much less important role in their
decision-making, illustrating how many caregivers consider their own
needs secondary to those of their care recipient.
-- Confidence and involvement of caregivers grows over time. Twenty-eight
percent felt they had the information they needed to make medical
decisions or treatment choice at the onset, 89% reported actively
seeking information when first taking on their caregiver role, 40%
considered themselves expert on the medical condition, medications and
treatment options at first and 59% reported an increasing role in
medical decisions over the past year.
-- Caregivers are information-seeking. Seventy-nine percent said they
frequently searched for information about the medical condition,
medications and treatment options of their care recipient. And,
regardless of their confidence, caregivers keep seeking information
throughout their journey with the patient. Sources most relied on for
information include: loved one's doctor(s) or other health professionals
(76%), health information websites, such as WebMD (51%), medical journal
or medical literature (39%) and friends of family members (37%).
-- Topics researched as helpful for making future care decisions include,
new treatment options and medications (69%), support programs for
caregivers like themselves (63%) and alternative treatment options
(56%).
-- Clinical trials and new treatments are of interest, but little
understood. Half (50%) seek information about clinical trials and new
treatment options, yet only 20% consider themselves expert in these
areas - pointing to the need for more information and education of
caregivers about clinical trials
"These findings show the need to support caregivers in their significant role as medical decision-makers," said Moravick. "By acknowledging their influence as critical allies with healthcare professionals, providing them with education and resources throughout their journey, particularly at the onset when the need is greatest, and equipping them with tools to build confidence and reduce stress, we will help ease their burden and benefit those they love and care for."
About Rx4good
Rx4good is a global patient advocacy and engagement consultancy dedicated to empowering organizations to put the patient first. Its clients and partners span the industry, nonprofit, government and academic sectors.
Partners:
70 organizations partnered in the development of the survey questionnaire and in the dissemination of the survey through social media engagement and outreach to their networks. Partners include:
Alagille Syndrome Alliance
Alkermes
Alliance for Clinical Research Excellence and
Safety (ACRES)
American Cancer Society
American Chronic Pain Association
American Heart Association
American Medical Women's Association
American Syringomyelia and Chiari Alliance
Project
Amgen
Angelman Biomarkers and Outcome Measures
Alliance
Cancer Support Community
CancerCare
Caregiver 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
HealthyWomen.org
Hereditary Neuropathy Foundation (HNF Cure)
Hermansky-Pudlak Syndrome Network
Horizon Pharma
Ionis Patient Advocacy
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
US Pain Foundation
Vestibular Disorders Association
Wilsons Disease Association
Methodology
"The Caregiver Factor: Understanding the Medical Journey of the Caregiver and their Information and Support Needs" is based on an online survey of 633 caregivers conducted between April 16 and May 31, 2018. The survey instrument was IRB-approved and developed with input from more than 70 organizations representing a broad range of diseases, caregiver-specific groups and companies.
Topline research results are available at www.rx4good.com. A complete research report of the findings will be available in July.
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SOURCE Rx4good
