Deaf and HOH patients are often dissatisfied with their healthcare & are more likely to have poorer outcomes than hearing individuals. What can we as clinicians do to provide better care for this patient population?

Madison Maines

Madison Maines MPAS, PA-C, a graduate from MCPHS Boston in 2022, is an orthopedic PA in South Jersey. She has been involved in the Deaf community since first taking ASL classes at Rowan University over 5 years ago – and has remained involved in the Deaf community ever since.  She saw firsthand the difference in quality of care and the effect on patient outcomes — and more importantly, patient lives — that this difference can have. 

Understanding Your Patient Population:

There are multiple different hearing statuses & understanding this is important when creating plans of care. “Hearing” is defined as hearing thresholds of 0-20 dB or better in both ears. Over 15% of the US population does not meet this threshold for hearing. In other words, you will have patients with barriers to hearing – but you’ve likely already encountered them!  Knowing the preferred terms “d, Deaf , HOH , DHH” versus those which may potentially be offensive such as “hearing impaired,” “disabled” and/or “deaf & dumb,” etc. is crucial.

Awareness: Deaf vs. HOH vs. Deafened Individual

“Deaf” usually means a person has little to no functional hearing, which may be referred to in the medical community as “profound deafness.”

d/Deaf (lowercase d vs. capital D) is a cultural topic within the Deaf community. Being familiar with this distinction can show your patients you know about and respect their culture. In my own practice, I use lowercase d, deaf when referring to the audiological condition of not meeting the 0-20dB hearing mentioned earlier. When referring to my patients who are a part of the Deaf community, I use the capital D, Deaf because I feel it shows respect and admiration for the Deaf community which I have been welcomed into.

“Hard of Hearing/HOH” typically means the patient has some residual hearing that may be amplified with devices. Keep in mind that just because the residual hearing may be amplified with devices, it doesn’t necessarily mean the patient will choose to do so.

“Deafened” individuals experience a change in or decline of hearing due to a particular incident or over time, typically after initial language acquisition. This population is less likely to identify with the Deaf Community–they may prefer lowercase deaf, or they may not be familiar with the distinction at all. Therefore, they may prefer reading/writing to communicate in the healthcare setting. This population may also use the term “late-deafened.”.

DHH or D / HH= Deaf / HOH

“Hearing impaired”, although previously a preferred term, can be considered offensive, as the verbiage implies the patient is less-than/impaired vs. patients with full hearing. Similarly, “hearing loss” is not a preferred phrase either.

People who are born deaf may not feel as anything has been lost since they never had hearing. Some people do not view their deafness as a loss because they have gained an identity and culture as part of the Deaf community.

It is not a reflection on intelligence or ability, and using these terms implies otherwise.  “Deaf & dumb” is, as you can imagine, an offensive term … yet it is still one I have heard from colleagues in practice. It is outdated, offensive  & inaccurate, and clearly should never be used. Likewise, “deaf-mute” is also offensive as it implies that these individuals do not have a voice/a say/an opinion.

Persons who are born deaf or lose hearing before language acquisition are more likely to use a non-verbal language such as American Sign Language (ASL) or Signed Exact English (SEE). It is best to ask a patient what forms of communication they prefer you to use, much like how you would ask about patient pronouns or preferred ways to be addressed, as there will always be  patients who are exceptions to the above statements.

Dedicated to promoting your patient’s agency?  Check out these 5 steps to promoting agency for patients with Dementia

Deaf Awareness Healthcare Facts:

Deaf/HOH patients are less likely to present to primary care for non-urgent care, less likely to attend routine or follow-up visits, and are more likely to have comorbidities or poor health outcomes than hearing patients. This could be the result of various factors – not feeling well-connected or well-understood by their providers, fear of not having an interpreter readily available/having to wait hours for an interpreter to arrive, or lack of understanding of plans of care due to inadequate communication from providers, to name a few.

Other factors that may be contributing to Deaf and HOH patients’ statistical likeliness to have poorer outcomes compared to their hearing counterparts are as follows:

• Deaf and HOH patients have higher mortality rates
• Longer length of stays when admitted
• Higher rate of readmission within a 30-day period
• Higher healthcare costs
• Deaf/HOH patients are more likely to have comorbidities than hearing patients

Involvement & Immersion into the Deaf Community

The best way to be an advocate for any patient is to be as informed as possible and create meaningful connections with them. Immersion is a great way to learn the values of any culture, not just Deaf culture! It also provides opportunities to practice your signing. Below is a list of local organizations & resources to get involved in the Deaf community in and around South Jersey.

• Deaf and Hard of Hearing Coalition of South Jersey – part of Allies in Caring, this organization is committed to supporting, empowering, and connecting the DHH community in South Jersey – more information available at https://www.alliesincaring.org/sjdhhc
• Deaf Events on Facebook – NJ Deaf, Deaf and Hard of Hearing Coalition of South Jersey, Atlantic County Society of the Deaf, Deaf Night Out New Jersey
• National Association of the Deaf (NAD), American Society for Deaf Children (ASDC), American Speech-Language-Hearing Association (ASHA), World Hearing Forum, and others

Interested in becoming a better patient advocate?  A CBIS credential is a great way to start — learn how to approach, treat, and advocate for the brain injury population today!

Furthering Your Education:

There are many resources on cultural competency which can help us be better healthcare professionals when it comes to serving all patients – it goes beyond just Deaf Awareness week! There are educational opportunities and resources (much like this article series) to learn what we can do each day in practice to show our patients we value and care about them outside the office/clinic/hospital, etc. as much as when they are in it.

• American Sign Language courses
  • Deaf and Hard of Hearing Coalition of South Jersey starting October 4^th (see @sjdhhcoalition on Instagram for more information!)
  • Local universities – Rowan University Glassboro, Rowan College at Burlington County (RCBC), and others
  • Online courses/resources – Signing Savvy, Dr. Bill Vicars, Gallaudet University Online ASL Courses
• Apps: Marlee Signs, The ASL App, ASL Dictionary
• Media: watching & supporting media about the Deaf can be another way to learn about the community – CODA, Deaf U (Netflix), etc.
• Support Deaf-owned businesses, create accessible content, support Deaf influencers, share information to raise Deaf awareness, etc.

 

Ten Actionable Items For Clinicians: Communicating with the Deaf or HOH Patient

As healthcare professionals, we play an important role in the lives of all patients but especially those who are underserved, underrepresented, and/or marginalized. The fact that you’re reading this article already shows your compassion and commitment!

1. Understanding your patient population is key!
2. Ask about preferred method(s) of communication – American Sign Language (ASL) is not universal, even within the US. ASL is a language with its own grammatical structure which is different than English. Some patients use Signed Exact English (SEE) which is using ASL signs in English order/grammar. Some patients use “home signs” which do not not follow ASL or SEE and is the result of hearing parents trying to gesture to communicate with their DHH child at a young age.
3. Reading & writing out the entire encounter should NEVER be first move unless the patient declines the offered/provided interpreter. If you would not assume a hearing patient can read/write/has great health literacy, you should not assume anything about your DHH patients, good or bad.
4. Lip-reading is not an appropriate method of communication, even if the patient tells you they prefer it. It has been shown that lip reading, AT BEST, is only 45% accurate.  Utilize other forms of communication to more effectively meet your patient where they’re at —  such as an interpreter services and visual demonstrations in conjunction with written instructions.
5. Use certified, hospital- or clinic-provided interpreters instead of who comes with the patient.  Attempting to interact with your patient without these services opens up the potential for neglect, abuse, or malpractice. This also can help build patients’ feelings of security, privacy, trust and understanding as well as increasing the likelihood of good patient outcomes.
6. Technology-assisted interpreting services are not the preferred method for translating. Unlike verbal translating services via phone for languages such as Spanish or French, ASL is a visual language and therefore in-person is the most effective form of communication. Although ASL is the official signed language in the US, there are regional differences in signing, much like how there is slang or accents in spoken English! For example, if you are treating a patient here in South Jersey and the virtual interpreter is located in California, there can be a mismatch in communication. To add, video interpreting services require high bandwidths, and technology has a habit of glitching when you need it most. Advocate for in-person interpreting services for your patients when possible. If they are not, video services can be used but should not be an office’s sole source of interpreting.
   

   If advocacy is your jam, check out these tips for advocating for your acute care patients!

7. Look at the patient, NOT the interpreter. It may be tempting to look at the interpreter because we’re so used to looking at who we speak to, but the interpreter understands you aren’t being rude. Looking at your patient further establishes the patient-centered care approach which has been proven to lead to better outcomes.
8. Consider your office layout: is it Deaf-friendly? “DeafSpace” is a concept coined by Hansel Bauman and Gallaudet University and implemented in many Deaf-oriented spaces. Deaf-friendly spaces are well-lit, open-concept, and painted with colors that contrast the skin to easily see signing hands. If you’re passionate about accessibility, this is a great resource!
9. Understand that your role within the Deaf community as a hearing person will always have certain boundaries. There are certain instances where it’s acceptable for a deaf individual to do something which would be offensive for a hearing person to do. For example, there are customs associated with choosing a “name sign” — which is a sign used in place of having to fingerspell out your name each time in conversation. Deaf individuals can choose their own name sign, but it is considered unacceptable for a hearing person to do the same. A Deaf person may give you a name sign which you can then use, but choosing your own name as a hearing person is disrespectful to Deaf culture.
10. Recognize the bias you may be bringing to the encounter, try to consider your patient’s cultural values, and be respectful of their decisions even if it differs from your initial recommendations. Rehab practitioners are great at recognizing the impact of cultural difference, personal values and preferences and how that impacts a patient’s interactions in the daily world – even then it can at times be hard to respect a decision that is different from our own perspective. Members of the Deaf community are proud of their deafness and may make certain healthcare decisions which may not be what you’d recommend/choose yourself.

Final Clinical Gems on Communicating with Deaf and HOH Patients:

• Not all people who sign/use gestures for communication are Deaf – some people love to “talk with their hands!” Some people who have difficulty with language production/phonation use ASL but are not Deaf.
• Not all signed language is ASL in the US! There are multiple signed languages – such as British Sign Language or French Sign Language, as well as combination signing and visual aids such as with Makaton.
• Shouting and over-enunciating is unhelpful, and can even come off as rude. Speaking slower doesn’t always help the patient understand you better, even if the patient states they can “lip-read”.
• Using facility-provided, certified interpreters minimizes the risk of neglect and malpractice.
• Seek out opportunities to connect with your DHH patients and practice your signing.
• Nothing is universal. If you are unsure of something, ask!

 

Finally, Happy Deaf Awareness Week (Sept. 19-25, 2022) from your friends at ARC Seminars!

 

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Cancer Related Fatigue (CRF) can be one of the most limiting factors for your patients – but how, as clinicians, can we help to manage- or even improve- this issue? Here, we delve into understanding CRF, how prevalent it is, and our three top ways to assist with this challenging and debilitating problem.

Understanding CRF

What is cancer-related fatigue, or CRF?  CRF is a term used to describe symptoms of fatigue associated with active cancer or cancer treatment, and is relatively common in cancer patients.  Your patient may report symptoms that are both physical and cognitive in nature, feel persistent and are not reasonable for the amount of activity they engage in on a daily basis.  They may tell you that rest and sleep haven’t been adequate enough for the level of fatigue they are experiencing.  Physical symptoms of CRF may include feeling weak, weighed down, slower than typical, exhausted after minimal activity and persistently tired. Cognitive symptoms of CRF may include disinterest or difficulty focusing on typical or previously enjoyed activities, irritability and forgetfulness.  CRF at a glance may appear very similar to symptoms associated with depression, but is considered a primary symptom associated with cancer and treatment for cancer.

What causes CRF?

The exact mechanism of CRF is not well understood, but can potentially be caused by several things ranging from the cancer itself to the cancer treatment.   Cancer treatment may consist of modalities including chemotherapy, radiation therapy, hormonal therapies, immunotherapy and surgeries.  Your patient may be experiencing CRF as a result of hormonal and protein imbalances, residual toxins from chemotherapy, and healing or infection from surgical procedures among other things.  The cancer itself may be placing additional strain on the body’s ability to perform natural functions like breathing, pumping blood and filtering waste causing fatigue as a secondary response to the increased work required.

 Grab this Free CRF Activity Tracking Guide to enhance your daily practice!

Cancer Related Fatigue is Common

Anywhere from 80-100% of patients report having fatigue that is notably different from fatigue felt in life pre-cancer.  Breast cancer patients specifically are at increased risk of experiencing Cancer Related Fatigue well into the survivorship phase, however all cancer patients carry some risk of this.

Despite CRF being fairly common amongst cancer patients in active treatment, it may be underreported.  This can be attributed to patient’s misunderstandings of what the symptoms represent, fearing it may be a sign of worsening illness, may be unmanageable and something they should “tough it through,” fear it represents unsuccessful treatment, and fear that it means permanent change to their body and/or lifestyle.  It is imperative as practitioners that we are able to recognize the signs and symptoms of CRF, understand the challenge and fear associated with CRF and be prepared to better support our patients through management of CRF symptoms.

Supporting your Patient with CRF: Where to start

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Prioritizing and patient-centered approach is key to gaining an understanding of your patient, their unique position and their priorities for care.  Discuss with your patient what their goals are, what specifically they want to to be able to do or accomplish that CRF is impacting, what their understanding of Cancer Related Fatigue is.  Discussing these points will help you better understand your patient’s lived experience and facilitate treatment.

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Plan to Conserve

Once you understand the occupations your patient wishes to prioritize, a good place to start will be with energy conservation and work simplification.  Educating your patient on the “four p’s” of energy conservation (plan, prioritize, pace, positioning) will be a great starting point, as it is something that can immediately be implemented into the daily routine.  The activity tracking guide will assist you and your patient with identifying which activities are the highest priority for the patient, making it easier to plan a day around ensuring they are able to complete them.  Pacing through important tasks will ensure your patient does not run through their limited energy reserves quicker than they are able to recover.  Discussing and adjusting positioning during task engagement will assist your patient with identifying which tasks can be completed sitting down or if there is a more ergonomic manner for completion.

Encourage your patient to reduce their daily task list when possible to decrease the amount of energy required to make it through the day.  If the patient is able to, encourage them to delegate tasks or portions of tasks that are especially difficult for them to complete.  Delegating a portion of a task versus a whole task may allow your patient to feel that they are still able to engage and participate in important activities and not being forced to give up the entire activity.

Important to Move

Moderately intensive exercise has been shown to be helpful in management of symptoms and promoting improved quality of life in cancer patients.  Activities including walking, running, resistance exercises, yoga and tai chi chuan may be beneficial to explore with your patient.  Exercise may be broken up into thirds (3 sets of 10 minutes) if necessary to allow for breaks and recovery.  Activity early in diagnosis has been shown to positively impact symptoms overall and may contribute to reduced fatigue, increased endurance and activity tolerance.

Sleep Hygiene

Patients suffering from CRF may report that it feels like they need thrice the amount of sleep as normal, and that it no longer feels restful or rejuvenating.  While naps may seem tempting, it is counterproductive for your patient to take multiple naps per day as it lessens the chance that their evening sleep will be restful.  Discourage your patient from taking late evening naps, limiting naps to 15-20 minutes in late morning or early afternoon.  This will decrease the likelihood of a non-restful sleep and help ensure they are able to sleep throughout the evening.  It may also be beneficial to explore routine modifications with your patient to ensure they are creating an environment conducive to restful sleep.  Mindfulness exercises, relaxation exercises, aromatherapy and use of a sleep tracker may assist your patient in getting the restful sleep they need in order to combat effects of CRF.

Spenser Bassett

Spenser Bassett graduated from the University of Findlay with her Doctorate in Occupational Therapy in 2022. She currently works in subacute & LTC, and is ARC Seminars’ Associate & Social Media Developer. Spenser is passionate about promoting diversity in rehab spaces & empowering rehab professionals to succeed beyond classroom walls.

To learn more about how to enhance your PT/OT/SLP and RN interventions for people with cancer, check out our comprehensive, 3 CEU webinar, ‘Cancer Care: A Collaborative Approach’. Practical, immediately applicable skills and resources that will make your treatments effective, evidence-based, and empowered!

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Knowing someone with cancer can trigger a wide range of emotions, ranging from initial denial to feelings of helplessness and frustration. Many people also experience intense anger, often fueled by an inescapable reality that, unless you’re an oncologist or a medical scientist working on innovative cancer treatments or even a cure, cancer figuratively has your hands tied behind your back.

That is, if you let it! If we all succumb to the idea that we are helpless in the fight against cancer, cancer has already won. We all have gifts to contribute, and each one of those gifts can be another tool that loosens cancer’s grip on its victims. Look at your strengths and marry them to strategies that can help bring cancer down.

Health and medical strategies

You may not be cut out to be a doctor or medical researcher, but that doesn’t mean you can’t find health and medicine avenues that lead to ways to fight cancer. You can look for relevant clinical trials being held in your area, for one. While most cancer clinical trials are for existing cancer patients, you may be eligible if you are a cancer survivor, or if a prophylactic vaccine trial becomes available. Your blood donations could also help a cancer patient who is undergoing treatment – and you may be able to dedicate your donation to someone special in your life. If you want to be more immersed in medicine, you can start the path to a nursing degree. If that isn’t in the cards for you, other positions are easier to access, such as that of a lab assistant. You can also look into becoming a home-health or personal care aid to help patients who are homebound. Also, don’t overlook the alternative or non-traditional fields that can be applied to cancer patient care. If you already practice meditation and yoga, for example, tailor your classes to the cancer patient’s special needs. Other options include acupuncture or massage therapy, and even music therapy.

Bring your strengths in other ways

Volunteering never goes out of style because non-profit organizations always need help and almost always lack the resources to pay for enough of it. Cancer sardonically presents numerous volunteer opportunities, from organizations that house family members who have loved ones hospitalized for treatment, to meal delivery services to hospice patients and those who care for them. In fact, you can probably come up with a number of practical services that cancer patients and their families need that healthy people don’t often think about. What about powerful laptops for the patient who can’t work in the office due to being immune-compromised, or just too ill from their treatments? Or childcare when they just don’t have the strength to chase a toddler or go to the playground? Cancer patients who are single parents can be particularly left feeling like they’re swimming upstream, especially if they don’t have a social network to help them.

Take those ideas and consider starting your own nonprofit. It takes more than simply filling out a few forms and you have to closely follow state and federal regulations, but guidance and help are available. Check out the tips and resources from the National Council for Nonprofits, and a nearby college for nonprofit leadership training.

Your new nonprofit can only fulfill its mission if people know about it, which involves marketing to get the word out. Social media platforms are a fast and easy way to spread the word. Create a Facebook business page in your nonprofit’s name and invite your current roster of friends, encouraging them to invite others. Incorporate videos to capture attention; TikTok, for example, could be a powerful way to profile some of the patients you plan to help and has a feature that encourages donations. Organize your contacts into various email invitation lists to offer them an email marketing newsletter with planned activities, donation options, and other helpful information about how they can help. Pay special attention to your subject line, as this is what can make or break your email marketing campaigns. Create a subject line that not only catches their eye but is relevant based on how you organized your lists. For example, what is relevant to corporate CEOs is likely to be different than church groups, so organize your email lists and your subject lines accordingly.

From despair to doing

Taking concrete measures to fight cancer can transform your anger and frustration into something productive. Suddenly, you’ve gone from helping a few people that you know with a cancer diagnosis, to helping several who only know you as a stranger – a stranger that used their gifts to go from feeling helpless, to helpful. This article has been guest written by Scott Sanders! Check out more of their writing at cancerwell.org!

To find out more about help for the person with cancer, check out our jam-packed, practical, and compassionate webinar, Cancer Care: A Collaborative Approach! This short but powerful webinar is sure to give your practice the boost it needs!

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Most clinicians working in a rehabilitation setting are aware of the common complications that can arise if diabetes is not appropriately managed, but are we aware of ALL the possible complications and comorbidities that come with diabetes?  One complication that does not really stand out is cognitive impairment.  We often associate cognitive impairment/decline with aging, dementia, stroke, etc.  Diabetes is not one of those conditions that automatically sparks “cognitive impairment”, or speech therapy, as a potential need.

As of 2020, the Centers for Disease Control (CDC) estimates that 34.2 million Americans (10.5% of the U.S. population) are currently living with diabetes.  Of those 34.2 million people, 7.3 million people are undiagnosed!

Clinicians know that living with and managing diabetes can be a complicated and daunting task.  Diabetes management is so much more than just “checking your sugar.”  Per the Mayo Clinic, persons currently living with diabetes are also at a greater risk for cardiovascular disease, neuropathy, nephropathy, retinopathy, foot damage, foot damage, hearing impairment, Alzheimer’s Disease, and depression.  All of those things sound familiar, right?   We must be willing to ask ourselves, ‘Are we giving our patients all of the tools to be successful at home when their inpatient stat is over?  Are we looking at the whole person?’  Although both individuals and their physicians are increasingly aware of cognitive decline in relation to diabetes, this awareness still lags behind that of other diabetes complications.

In recent years, several different governing bodies have started to come out with recommendations and guidelines regarding diabetes and cognitive impairment. 

Per Biessels and Whitmer in 2019, the recommendations have two main general components: (1) cognitive impairment in individuals with diabetes should be actively sought for, because unrecognized cognitive impairment is associated with adverse health outcomes, and (2) findings should lead to an individualized diabetes management regimen, compatible with the individual’s capabilities, generally with more lenient treatment targets and simplified treatment regimens to improve treatment compliance and reduce treatment-related risks.  Here is a summary of the guidelines from the Endocrine Society Clinical Practice Guidelines in 2019:  Perform cognitive screening inpatients 65 years and older.  Repeat every 2 to 3 years after a normal screening test result for patients without cognitive complaints or repeat 1 year after a borderline normal test result.  In patients with diagnosis of cognitive impairment, simplifying medication regimes and tailoring glycemic targets (i.e., less stringent) is suggested.  As with any type of guidelines, implementation and follow up can be a challenge. 

Want some resources for patients, caregivers and clinician? Grab The Ultimate Guide to Managing the Diabetic Foot right here!

What can we do for inpatient rehabilitation patients with diabetes that we suspect have some degree of cognitive impairment? 

Refer to speech-language pathology!  The inpatient rehabilitation setting lends itself to interdisciplinary team communication and management which only improves patient outcome and successful home discharges.  A large portion of patients with diabetes may not have a diagnosis that warrants an automatic referral to speech therapy.  It is important to note that occupational therapy can address cognitive impairment in patients as well, but it can be beneficial to get a speech-language pathology referral to address cognitive impairment for more intensive treatment.  Occupational therapy has a laundry list (sometimes literally!) of items to address during an inpatient rehabilitation stay and a referral to speech-language pathology can take some of those items off their clinical plate so they can focus on upper extremity strength/coordination, as well as activities of daily living (bathing, dressing, etc.), and the ever-present toileting tasks such as toilet transfer and personal hygiene. 

How can you secure a speech therapy referral for diabetes? 

It is simple:  COMMUNICATE AND DOCUMENT.  When doing the thorough chart review prior to the initial evaluation, take note of not only the reason for admission (or the immediate known problem), but also take note of the patient’s comorbidities, most recent hospitalization trends, and discharge support system (if noted in the chart).  These items will not only help you provide more comprehensive treatments and interventions for the patient, but it will also give you a better idea of the “big picture” for the patient.  Take note and DOCUMENT any type of increased difficulty with organization, sequencing, problem solving, or memory that is occurring during things like bathing, dressing, toileting, and ambulation.  All disciplines of therapy can comment on cognition – even physical therapy!  COMMUNICATE with the attending physician and speech department to secure the referral for a formal cognitive evaluation by the speech-language pathologist even if you are ‘on the fence’ about the need for more formal cognitive intervention.  It is better to make the referral and have the evaluation completed with no formal interventions needed than to not have it completed it all. 

Why make a referral for speech therapy for someone with diabetes? 

It is becoming increasingly well known that speech-language pathologists do much more in their clinical practice than just focus on functional communication.  Speech-language pathologists address impairments in attention, memory, processing, problem solving, and executive functioning.  Within those areas falls medication management, which is a known issue that people with diabetes can struggle with.  Medication noncompliance can occur for a variety of reasons such as the medications making the patient feel ill, forgetfulness, decreased organization, financial constraints, and a general misunderstanding of the importance of being compliant. The Agency for Healthcare Resource and Quality has a resource page for people transitioning to the community in regards to medication management and can be found here.   These are some great resources, but it is important to note that sometimes more than just compensatory strategies are needed.  Speech therapy can utilize evidence-based treatments for cognition that can improve the person with diabetes’s ability to manage medication and utilize those strategies – what good is a pill box or planner if the patient does not know how to utilize it appropriately?  The American Congress of Rehabilitation Medicine (ACRM) has published an evidenced based manual of cognitive therapy interventions that range from impairments in attention and memory to impairments in insight and executive functions. These interventions can assist with laying the cognitive groundwork needed to implement a successful medication management system or program. 

As outlined above, speech therapy can serve an integral role in the treatment of patients with diabetes… but including the SLP is not where the buck stops for a comprehensive treatment plan. 

Including the patient’s support system day 1 is also an important part of setting up the patient for success.  The caregiver needs to be just as educated and involved regarding the patient’s cognitive impairment as the patient themselves and their treatment team.  This education and training can be completed throughout the course of the patient’s stay and must involve the interdisciplinary treatment team.  Involving your facility’s pharmacist in the caregiver education and training is critical to setting up a medication management system for success.  The caregiver being able to demonstrate teachback of the information being taught is an important point – make sure they are not just nodding along with you!  Ensure both the patient and the caregiver know how to operate the glucometer, administer insulin, and all the other moving parts that go into diabetes management.  Educate and train not just once, but OFTEN!

Diabetes is a multifaceted chronic condition that requires not only management from the patient, but management of the entire interdisciplinary team.  Speech therapy can play a critical role in assisting patients with managing their diabetes as it is evident that cognitive impairment is prevalent in those individuals currently diagnosed with diabetes.  Speech-language pathologists can provide patients with cognitive therapy and strategies to assist with successfully managing and understanding their chronic conditions.  In addition, education of the patient’s caregivers and support system can also increase compliance and successful management. 

We want to see our patients not only get home but be successful and healthy once they get there!

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Chemo-induced peripheral neuropathy (CIPN) can be an incredibly prevalent complaint for people who are undergoing chemotherapy… but why is this the case? And as therapists, how can we make sure that we are providing the most effective treatments to work on this disruptive condition?

CIPN can have a large, yet often underappreciated effect on the ongoing quality of life, safety, and wellness of the person. It can lead to injury, falls, loss of function, depression, or even paresis, dependency and limb disuse.

CIPN: What is it?

Chemo-induced peripheral neuropathy refers to the constellation of symptoms that can arise from damage to the nerves suppling the peripheries of the body, secondary to chemotherapeutic interventions. Nerve damage can result in numbness, pain, movement difficulties, paresthesia, burning, weakness, and cramping. In the treatment and management of cancer, certain drugs and medications can cause peripheral neuropathy and motor neurotoxicity.

Chemo-induced peripheral neuropathy, or CIPN as it is commonly referred to, is related to certain chemo drugs and to higher doses of medication. It most often presents clinically as a sensory neuropathy, though it may be accompanied by motor and autonomic changes.

The reasons that chemotherapeutic drugs damage the peripheral nervous system are numerous, and include damage to the myelin sheath, neuroinflammation, and damage to microtubules, mitochondria, and DNA. The exact neurotoxicity mechanisms are associated with specific chemotherapeutics, such as platinum-based antineoplastics, taxanes, and proteasome inhibitors.

Grab this cheat sheet to help manage cancer related fatigue!

The prevalence of CIPN is wide-ranging, and has been reported to affect people at various stages of treatment. Overall, prevalence of CIPN for those who undergo chemotherapy has been reported to range from 19% to over 85%.

Some drugs (such as paclitaxel and oxaliplatin) demonstrate acute neuropathy during or immediately after infusion; however, many other CIPN symptoms present later in the course of treatment- weeks, or even months after the completion of chemo. This study demonstrated the wide range of CIPN onset, and identified peak prevalence at the 6-month assessment. Chemo-induced peripheral neuropathy can, at times, become worsened as treatment ends, or mild CIPN may become more severe- and may persist for months or even years after treatment.

CIPN presents as a predominantly sensory type of neuropathy, which may be accompanied by motor and autonomic changes. Sensory symptoms often involve the hands and feet as a ‘glove’ or ‘stocking’ neuropathy, with effects most exaggerated at distal regions of the extremity. Sensory symptoms can present as numbness, tingling, impaired ability to touch and vibration input, and decreased sensitivity to temperature. Pain may also present, and may be experienced as burning, shooting/electrical pain or generalized hyper-algesia. These sensory changes can become severe and even lead to a loss of sensation over time.

Motor symptoms may take the form of weakness in the peripheries, or may be noticed as a result of frequent falls or a lack of coordination. Autonomic symptoms, which are least common, may involve orthostatic hypotension, constipation, and sexual dysfunction.

CIPN, in contrast to other neuropathies such as diabetic neuropathy, may present more quickly and acutely, and progress more quickly to all extremities.

So, as therapists, what is important for us to know about the treatment of CIPN?

Well, firstly, it bears mention that as Chemo-induced peripheral neuropathy is a complication of the often life-saving or preserving treatment that the patient has undergone, and so can be a complicated, emotional area for interventions. This may also compound the underappreciation of the toll on quality of life that CIPN can have.

However, this condition is incredibly disruptive and distressing to the patient, and should be validated as such. It is also important to empower your patient to take an active part of the interventions for CIPN, as treatment and therapeutic intervention can be very effective!

So, let’s take a look at some of the interventions we can affect, as clinicians.

Pain

Treatment of the pain related to CIPN can include sensory challenges, such as graded desensitization: progressive, consistent stimulus to the affected area, for short periods of time. The hyper-algesic area should be exposed to stimuli frequently throughout the day, in order to provide high levels of sensory input. The mechanism of action of the brain will be to acclimate to the input and gradually decrease the pain response from the maximum to a lesser level of pain.

Contrast bathing may also fit underneath the umbrella of desensitization, as moving from very warm to very cold water with the affected extremities can lead to a lowering of the pain threshold, as well as eliciting the vasodilation and constriction of vessels in the extremities that can help to decrease pain.

Manual therapy can be very helpful in dealing with pain, cramping, and desensitizing the painful region of the limb. It can include manual lymphatic drainage, myofascial release, tissue elongation, stretching/ROM and strengthening.

Emerging evidence in the area of cupping and negative pressure therapy to help with CIPN related pain is also a promising area of treatment for therapists and clinical practitioners.

Symptom Management/Education: In the event that the pain is not responding to therapy as well as would be hoped, conservation and compensation can also be used to help manage pain. Educating your patient about their pain triggers and how to manage and make compensations to avoid and minimize exposure may be helpful. Similarly, noting alleviating factors and strategies that are helpful will help promote confidence and empowerment in managing neuropathic pain.

Want to learn more about rehab for Cancer Pain? Read this article!

Weakness

Weakness related to chemo-induced peripheral neuropathy neuropathy can be treated by including interventions such as standard strengthening and resistance training, in hand or intertarsal strengthening and dexterity exercise, and gross and fine motor coordination activities. There is much evidence to support the role of strengthening in the treatment and management of CIPN, both from a pain management point of view and a functional point of view.

Coordination/Gross Motor Control tasks, as well as fine motor control, can target functional tasks such as bilateral integration, typing/writing, and object manipulation will be essential in dealing with neuropathy, specifically as it applies to the upper body.

For affected feet and lower extremities, proprioception and strengthening exercises will help to decrease falls risk and loss of balance.  Energy conservation for muscle fatigue and overuse may also be indicated as the person may have adopted compensatory movements that are less painful, but may be more energy consuming.

Balance

 gait patterns, and decreased righting reflexes in gait and transfers. Balance interventions can include traditional balance exercises, stabilization work such as yoga programs, rehabilitative/compensatory strategies such as textured insoles and external assistive devices, and adaptations to the home to increase safety.

Loss of balance and risk of falls are an inherent risk with CIPN- impaired sensory and motor function in the feet can contribute to tripping, abnormal

Traditional exercises may include Compliant/non-compliant surface standing challenges, balance exercises incorporating visual or cognitive and dual-tasking activities, perturbation exercises, and trampoline activities.

How to set therapy goals for Hospice and Palliative Care

Sensory Loss

Severe chemo-induced peripheral neuropathy and sensory involvement can lead to more permanent or intense sensory loss- however some interventions to consider in this instance may include- use of modalities, such as TENS/NMES stimulation (at sub-motor levels) during Fine Motor Control tasks; or Low-Level Light Therapy, both of which have been shown to be helpful in the treatment of neuropathy.

Stereognosis activities, or vision occluded sensory tasks, may be helpful to teach your patient techniques and strategies to assist with identification of objects, and safety skills when sensation is diminished or lost.

Graded Sensitization, or increasing sensation and sensory input, and Vibration therapy are also interesting and effective interventions to help to rehabilitate the person with sensory loss related to CIPN.

Use of External aides such as built up/textured utensils/shoes may be necessary as compensatory devices to ensure safety and success during BADL and IADL tasks for a client with CIPN related issues.

Safety and Home Hazard Management

And importantly, even as we work to rehabilitate and recover function and sensation, we should always work to ensure the person is safe and alert to potential hazards that they may be subject to.

Safety/Hazard Management interventions for Chemo-induced peripheral neuropathy may include Kitchen safety activities and cooking/food preparation tasks; Falls prevention program; and Compensatory techniques/strategies for safety such as the use of appropriate assistive devices.

Examination of neuropathy and how to examine hands/feet for skin integrity will always be a high priority and each patient should be educated at length about the importance of skin integrity.

Finally, make sure that risk reduction strategies to reduce worsening of symptoms and prevent secondary deficits are included as a part of the education given to the client.

Chemo-induced peripheral neuropathy can be a common complication among your patients and clients- but effective interventions to boost function and reduce pain are available! These treatment options are the tip of the iceberg, but learning more about addressing this complication will serve you and your clients very well.

To learn more about how to power up your PT/OT/SLP and RN interventions for people with cancer, check out our comprehensive, 3 CEU webinar, ‘Cancer Care: A Collaborative Approach’. Practical, immediately applicable skills and resources that will make your treatments effective, evidence-based, and empowered!

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Cancer treatment is so multi-faceted – lots of moving parts, lots of appointments, scans, doctors, and therapies go into treating and managing all types of cancer.  It is very overwhelming to say the least, and it sometimes can feel like you are losing your mind due to sheer number of tasks you must accomplish to keep managing your disease in check.  Part of that feeling may be due to something called ‘chemo brain’. 

 

What is ‘Chemo Brain’?

According to the Mayo Clinic (www.mayoclinic.org ), “chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur during and after cancer treatment. Chemo brain can also be called chemo fog, cancer-related cognitive impairment, or cognitive dysfunction.”  It’s important to note that “chemo brain” is not just limited to those people with brain related cancers.  It can affect anyone who is currently undergoing chemotherapy, as well as those who are receiving radiation, bone marrow transplant, immunotherapy, and targeted drug therapy.  We need to remember that cancer is a systemic issue, meaning it affects all parts of your body and not just the cancer part.  Specific types of chemotherapy drugs used in fighting different types of brain cancers can cross the blood brain barrier (BBB) although there are not many that do so.  Per the National Cancer Institute (www.cancer.gov), the blood brain barrier is “a network of blood vessels and tissue that is made up of closely spaced cells and helps keep harmful substances from reaching the brain. The blood-brain barrier lets some substances, such as water, oxygen, carbon dioxide, and general anesthetics, pass into the brain. It also keeps out bacteria and other substances, such as many anticancer drugs.”

How common is chemo brain? 

Studies have estimated that 67% of people receiving chemotherapy have reported some type of cognitive problem – so more than half!  Women are more at risk then men and genetic differences may also increase your risk of developing chemo brain.  For most people, chemo brain symptoms resolve themselves 9-12 months following the end of chemotherapy treatment.  Approximately 10-20% of people have chemo brain symptoms persisting beyond 12 months, and some even report symptoms 10 years post treatment.  These symptoms should be considered stable, meaning unchanging.  If they are worsening it could indicate a larger underlying problem. 

What are the symptoms of chemo brain? 

The most common symptoms of chemo brain include decreased short-term memory, decreased attention span, increased difficulty word finding, and trouble with multi-tasking.  Per Dr. Arash Asher, who is the director of Cancer Rehabilitation and Survivorship at Cedars-Sinai (www.cedars-sinai.org), “Chemo brain is not dementia.  And there is no evidence that it leads to dementia.”  That is a very important item to remember if someone is experiencing these types of symptoms – decreased memory does not automatically equal dementia!  A good way to monitor your symptoms when you first start to notice them is to keep a journal.  That can sound counterintuitive at first.  Almost like “How am I supposed to remember when I cannot remember?!” The short answer is – Do the best you can!  Keep a notepad nearby and make note when you cannot think of a word, or cannot recall if you completed a basic household task.   The idea is not to keep a detailed log, but just to generally have an idea what types of issues you are having. The more information you can provide your physician, the better!  You physician may refer you to a neuropsychologist for a detailed cognitive assessment, but more often than not, it will probably be recommended that you manage your difficulties without that type of intervention.

How can chemo brain be managed? 

Management is going to be dependent on your symptoms (which is why journaling is so important!).  As previously mentioned, the most common symptoms of chemo brain include decreased short-term memory, decreased attention span, increased difficulty word finding, and trouble with multi-tasking.  Here are some suggestions as to how to manage the most common symptoms of chemo brain:

Decreased Short Term Memory: 

Get yourself a planner or datebook!  Having a planner can be helpful when remembering items like appointments, birthdays, anniversaries, and holidays.  It is not realistic to expect yourself to be able to keep all of the items you need to do for the next few weeks solely in your mind.  Some people like the feeling of writing items down, and crossing items off a ‘to do’ list as they are accomplished, while others prefer to use apps in their smartphones – it is all dependent on your personal preference.  One is not better or more effective than the other is.  The only caveat is that you have to consistently put the information you need to remember in the planner or app – it unfortunately is not transferred by osmosis or telepathically.  If you yourself are having trouble doing so, call on a friend or family member to assist you.  Once you get into a good routine you should be able to make using your planner or app a habit.  Also hanging up visual aids around your home can be helpful for things such as remember to take your wallet, purse, or phone with you before leaving your house.  There are many different types of fashionable letter boards out now at a good price so your memory aides can match your home décor!

Decreased Attention Span: 

Work in a quiet environment when completing important tasks, and take breaks!  Use a simple egg time to help avoid burn out.  Set the timer for 30 minutes (or whatever you feel is good for you) and work on a task or project until that timer sounds.  Once the timer sounds, get up from your workstation and take a break.  That break can look like a short walk around the block, making yourself a cup of coffee or even turning on some light music.  It is important you know your own limitations and do not try to push yourself too hard.  The quality of your work will go down as your attention to the task decreases.   Be sure to schedule important items in the morning when you have more energy and are fresher.  If you wait until the end of your day to get those important things completed, fatigue is going to come into play and your attention will be even further diminished. 

Difficulty Word Finding: 

If you are having trouble finding the right words at times, give yourself a minute or two to think of it – take your time!  Describing the item you are trying to recall is also effective and so is using a synonym (word that means the same).  The most important thing you can do for yourself when you have trouble word finding is to be kind to yourself!  It is very easy to fall into a negative thought pattern when having increased difficulty. 

Difficulty Multi-Tasking: 

Working in a quiet environment and limiting the number of items you are working on at one time will be the best way to manage this part of the chemo brain fog.  In the past, you may have been able to have three or four things going at once but in order to be successful while foggy you have to adjust – work on one or two items at time.  If there are several parts to something that need to be completed at once (a recipe, large dinner) you may have to ask for assistance.  Asking for help is not a sign of weakness or a bad thing to do – it shows you have good insight into your abilities and want what you are currently working on to be of good quality.

It is important to keep in mind that the chemo brain fog will not last forever. 

Yes, it is true that some people experience things associated with chemo brain for quite a while but overall most symptoms resolve themselves once your treatment is completed.  Doing things to compensate for the trouble you are having will help you be successful navigating your chemo brain fog.  Listening to your body is incredibly important throughout the recovery process.  Nontraditional treatments may help you navigate chemo brain dog as well.  Do not discount things like mindfulness, meditation, and yoga – there is wonderful research to suggest that these items can help improve overall cognitive functioning and thinking skills.  Per an article published in the Journal of Cancer Survivorship in 2015, “participation in a mindfulness-based stress reduction program yields robust and sustained improvement in cancer-related cognitive impairment, a prevalent and potentially debilitating condition that affects attention, memory and executive function in survivors, according to a new study.”  You can find a link to the study referenced here.

As stated earlier, cancer treatment is multifaceted.  Keep in mind that recovering is also multifaceted, and has just as many moving parts as treatment.  Be kind to yourself, and readily accept help from those who are willing to offer it.  Recovery is a process, and it truly takes a village.

To find out more about caring for the person with cancer, check out our jam-packed, practical, and compassionate webinar, Cancer Care: A Collaborative Approach! This short but powerful webinar is sure to give your practice the boost it needs!

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Anemia is present in approximately one third of patients with heart failure.  There are multiple factors that can contribute to these conditions co-existing.  And it is hard to say in general terms if one is causative of the other.  They do have several risk factors in common, some of which are chronic kidney disease, diabetes mellitus, inflammation, advanced age and exposure to toxins such as chemotherapy. 

It appears that in some cases, heart failure can lead to anemia and in others the opposite is true.  There are many complex mechanisms that go into the domino effect of each of these scenarios, but in simplified terms… if a person has heart failure that leads to things like renal dysfunction, inflammation, nutritional deficiencies, or blood loss or is on a medication such as an ACE inhibitor or beta blocker… these things can then lead to anemia. 

On the flip side, if a person has anemia (due to any number of reasons) – this would cause the need for an increase in their cardiac output in order to get the needed amount of oxygenated blood to all the tissues and organs that need it.  This, in turn, can overwork the heart and lead to heart failure.

The combination of anemia, chronic kidney disease and iron deficiency in patients with heart failure often occurs and is associated with progression of these disease processes and poor prognosis.  So, although you could surmise for each specific case you encounter that one diagnosis may have led to the other, it is still unclear whether anemia leads to advanced heart failure and worse outcome or if anemia is merely a sign of more advanced disease.

Treatment Options:

When treating anemia, the logical solution would be to try and increase Hgb levels.  Traditionally, this has been successfully accomplished though administration of blood transfusions.  In the person with heart failure however, there are added risks of possible volume overload and ischemic events and has not shown significant difference in overall outcome despite a measured increase in Hgb. 

Erythropoiesis-stimulating agents (ESA) are medications which stimulate the bone marrow to make red blood cells. They are often used to treat anemia due to end stage kidney disease, chemotherapy, after major surgery, etc.  When used in the heart failure population, as with blood transfusions… the Hgb levels did improve, but this type of therapy has been shown to increase the risk of thrombolytic events and ischemic stroke.  Because of this risk, this type of therapy is not recommended for people with heart failure.

Iron deficiency is quite prevalent among anemic patients, showing that approximately 70% of anemic patients are also iron deficient and about 50% of people with heart failure are iron deficient.  Clinically it is advantageous to screen all heart failure patients for iron deficiency, regardless of what their Hgb levels are.  Based on the research, it seems that the most promising treatment for patients with anemia and heart failure is Intravenous Iron Therapy.  This type of treatment has been shown to improve the New York Heart Association functional class, exercise capacity and VO2 max, and quality of life and does not have the same risk factors associated with it as the previously discussed treatments do.

Visit the American Heart Association for information and great printer-friendly resources: www.heart.org 

Clinical Implications:

Activity Tolerance –

Clinically speaking, one of the main things you will notice in your patients will be a decreased tolerance to activity and exercise.  In a person who is otherwise healthy, anemia causes your system to try and compensate for the lack of Hgb by increasing heart rate and stroke volume in order to try to get the lessened amount of oxygen out to the rest of the body.  These functions are going to be impaired in the heart failure population.  This would then lead to decreased in oxygen delivery and an increase in the symptoms they may already be experiencing – shortness of breath and fatigue.  This can make exercise and even basic daily activity more difficult.

And there is no doubt that it is difficult for these patients to be active.  But it is also extremely beneficial to keep moving.  It’s true – exercise is not always tolerated well by patients with heart failure (even before we start talking about if they may be anemic or not) … and the intolerance of exercise in heart failure with preserved ejection fraction is thought to be due to the way in which our bodies are using oxygen and not necessarily due to the overall reduced cardiac output.  This could be either from the decrease in the amount of oxygen delivered to the muscles during exercise (possibly due to anemia) or the inability of the muscles themselves to use the oxygen that is delivered.

But the fact that exercise is not well tolerated is not a reason to avoid it.  Some studies suggest, that if we use high-intensity exercise with this population, it will actually improve the ability of our bodies to deliver and use oxygen (which, remember – is the reason the intolerance may be occurring in the first place).  The improvement with oxygen consumption can then show decreases in inflammatory processes, improvement with cardiac filling pressures, improvement with exercise capacity, quality of life, and will reduce the morbidity and mortality of this population.

And when we say ‘high-intensity’… what does that mean?  High intensity to you will be different than high intensity for your patient and even different still for an elite athlete.  It can be very subjective if we allow it.  A very easy and practical way to measure and track intensity of exercises is to calculate your patient’s Max Heart Rate (which is 220-age)… then figure out at what percentage of that heart rate you want them to be working.   When you are looking to formulate a range for your patients to stay in during exercise – Target heart rate during moderate intensity activities is about 50-70% of maximum heart rate, while during vigorous physical activity it’s about 70-85% of maximum.  So, depending on other comorbidities and the fragility of your patient, you may want to stay in the lower range, but if they can handle the higher level, go for it!  After you figure out their exact heart rate range that they should stay in, you want to provide the numbers to them and also let them keep a pulse ox on their finger during the activity you are having them do.  They can check it periodically and ensure that they are still working at the most effective intensity… then if their heart rate falls below, that will cue them to work harder or go faster.

Download our Free Heart Failure Resources! Our Commonly used HF medications and Target HR Tracker will help you upskill your Heart Failure rehab- immediately!

In addition to making sure that the intensity is high enough, there are other studies to suggest that  the mode of exercise matters.  Heart rate recovery immediately after exercise reflects parasympathetic activity, which is markedly reduced in heart failure patients. One study demonstrated that both continuous and interval exercise training programs improve exercise capacity. However, continuous training improves earlier heart rate recovery, suggesting more benefit to the autonomic nervous system which has been impaired in those with heart failure.

Exercise has benefits outside of the physiological changes that it brings as well.  It has been shown to act as a primary preventative measure, and if implemented will be a means for patients to avoid developing heat failure in the first place.  If your patient does have a diagnosis already, exercise can still help with secondary prevention.  It will improve symptoms and cardiac functioning in those who already experience heart failure.  This is great news for both us therapists and for those at risk!  Exercise is what we do – and with a little training and education, we can work to improve the disease process and quality of life.  In addition to helping prevent disease or complication of disease, exercise tolerance, compliance, or impairment can also have predictive qualities and is a reliable prognostic indicator of future health.

It is also important for us as clinicians to know, and to impart onto our patients, that completing the rehabilitation program is fantastic, but that it does not mean that the results will be sustained. Studies have shown that of exercised and non-exercised patients, the exercise group initially exceeded but when left without training for 6 months, were performing at the same level as those who had not completed a training program whatsoever. It is essential for our patients to be in an ongoing and sustaining program or to alternatively have a program that they are motivated to complete on their own.

Cognition –

Heart failure has also been associated with cognitive impairment. Patients with heart failure who have anemia have been identified in the literature as having a greater than four times more risk of cognitive impairment compared to the heart failure patients who did not have anemia. 

Functionally speaking, we would want to take note of their ability to complete activities of daily living and perform their basic care needs, manage their medications and any other tasks that they would normally complete.  These tasks may warrant intervention by the therapy team but may also require support and education to the caregivers as these patients may require more support from a cognitive standpoint than they did previously. 

A Speech Language Pathologist referral is not something you would think of first when dealing with people with heart failure but given the correlation between heart failure and cognitive impairment, it would be worth having someone complete a more comprehensive evaluation to provide a more well-rounded plan of care.  This could also lead to a discussion about making a standard to at the very least screen cognitive function in these patients to determine the need for further referral and assessment.    

As you can see there are many aspects of heart failure that we may not initially think about… or think that we can help with!  But as we find out more about this disease process, it’s encouraging to know that we can continue to be creative in our approach and make simple, but meaningful, changes in our patients’ lives! 

To learn more about the (not so obvious) aspects of heart failure, check out our short (but information packed!) webinar – Update Your Care Plan: Heart Failure.

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Sleep apnea affects many people that we work with in the rehab world.  But do we really understand how it may affect their bodies as a whole, what other co-morbidities are often present, and how this all plays a part in their outcomes?  Sleep apnea is often something we see in a past medical history, and we think of it as just something that disrupts sleep.  But we do not often think of it as something that would change the way we look at our patients’ overall care.  The connection between sleep apnea and heart failure may make you rethink about how you approach these patients.

Download our Free Heart Failure Resources! Our Commonly used HF medications and Target HR Tracker will help you upskill your Heart Failure rehab- immediately!

Sleep Apnea and Heart Failure

First- the basics. There are two types of Sleep Apnea – Central and Obstructive. 

The relationship between heart failure and sleep apnea is multifactorial and therefore can be tricky to ensure the right interventions are in place.  Increased pulmonary congestion is thought to contribute to increased respiratory control instability and could lead to central sleep apnea. 

Central sleep apnea is generally defined as when the brain temporarily stops sending signals to the muscles responsible for breathing.  Central sleep apnea in patients with heart failure is usually characterized by something called Cheyne-Stokes respirations.  This is an abnormal pattern of breathing characterized by a crescendo-decrescendo cycle that lasts anywhere from 30 sec to 2 min.  The person would be observed to take breaths which are increasingly deeper and faster (the crescendo) followed by breaths that are more slow and shallow (the decrescendo) that eventually result in temporary stops in breathing, or apnea.  Then the pattern repeats. 

Some studies noted 44% of heart failure patients exhibiting Cheyne-Stokes respirations after being weaned from mechanical ventilation, whereas other studies showed Cheyne-Stokes respirations in as high as 75% of heart failure patients who were admitted to the hospital for acute exacerbations. 

And although those numbers are quite significant in the prevalence of Cheyne-Stokes respirations (and therefore central sleep apnea) in the heart failure population, cervical venous congestion may equally effect the upper airway and could lead to obstructive sleep apnea as well.  The congestion takes up space and obstructs airflow. 

Obstructive sleep apnea is usually characterized by snoring, accompanied by random periods of apnea throughout the time they are asleep.  This is the type of sleep apnea that we often see in the chart.  But it’s important to always discuss these cases with the clinical team in order to accurately diagnose which type of sleep apnea is present (or if it’s a combination of the two) in order to most effectively get them treated. 

Treatment-wise, there is a fair amount of research regarding nocturnal supports that these patients may be prescribed.  As mentioned before, these patients usually have many factors and comorbidities to consider, so it is important to simply be aware of what the current research is saying in order to have an informed discussion with the team when needed.  We most often see CPAP being used by our patients but seeing now that it is not only obstructive sleep apnea that occurs with heart failure patients (but a combination of the types of apnea), this may not be the best choice.  There are other options that may be more suitable for central sleep apnea and for a combination apnea. 

To learn more about Sleep Apnea and resources you can provide to your patients, check out https://www.sleepapnea.org/

What treatments are available for Sleep Apnea?

Adaptive Servo Ventilation utilizes positive airway pressure ventilatory support that adjusts based on the detection of apneas during sleep.  So, the ventilation is provided only when the machine detects pauses in breathing.  There is a fair amount of research for this type of support with patients who have heart failure with central sleep apnea.  Some studies have limitations with participation or compliance, but this has been shown to be the best choice in reducing episodes of apnea in this population.  This is thought to be due to the ability to adjust the mode of delivery and can target those patients that have a combination of Central Sleep Apnea and Obstructive Sleep Apnea. 

Continuous Positive Airway Pressure (CPAP) is supported in the literature as the best choice for people with Obstructive Sleep Apnea.  There are mixed results for the use of this with Central Sleep Apnea.    There may be some patients with Central Sleep Apnea who are successful with CPAP, but this may be due to them actually having a combined apnea… so the CPAP is addressing the Obstructive aspect of the issue.

Oxygen treatment has shown to be fairly effective but would not be the primary choice of treatment in either type of sleep apnea.  This could be used as a second line of treatment if someone does not tolerate the other devices or responds negatively to them.  By wearing the concentrated oxygen overnight, the patients do get some benefit by increasing the oxygen stores in the body and therefore reduces the ups and downs in the blood gases during periods of apnea.

Transvenous Phrenic Nerve Stimulation can also be an option for Central Sleep Apnea.  This is where a device is implanted that stimulates the phrenic nerve to initiate breaths.  Initial studies revolving around this intervention have shown significant reduction in the episodes of apnea during sleep.  So for cases that have been identified as Central vs. Obstructive, this may be worth discussing.

As you can see there are many factors to take into account.  More research is certainly needed, but it always helps to stay informed of what your patients’ choices are in order to not only have educated discussions with the care team, but also to steer the patients and caregivers toward the best choices based on current research.

In addition to various devices that your patients may be using, you certainly want to pay attention to some more basic factors that sleep apnea brings into the mix.  It is well known that lung volume is greater when in a sitting position or a side-lying position as compared to a supine position.  This is almost immediately evident when we ask our patients to lie down.  One of the first things they may say is that they either can’t… or that they need 5-6 pillows.  This could be a great opportunity for us to provide education on several options for comfortable positioning during sleep and rest periods. 

How does Sleep Apnea affect our patients?

Research has also shown that some of the effects that apnea has on our bodies do not simple go away in the morning and show up again at night.  When someone has pauses in their breathing at night this causes an increase in sympathetic activity.  This increased sympathetic activity will then cause peripheral vasoconstriction and in turn cause increases in blood pressure and increased work for the cardiac muscle.  A vicious domino effect that lasts throughout the time they are awake. 

Without decreasing the apnea during sleep, there’s not much we can do to correct this.  However, it is important to continue to monitor vitals and document the patient’s response to activity – their system is being taxed even when they are at rest (from the increased sympathetic tone)… so tolerance to activity may even be poorer still than compared to someone without sleep apnea.  You can see why it is important for us to be in tune with what is going on with our patients’ sleep and being able to guide them effectively to tap into the treatments that are right for them!

To learn more about the (not so obvious) aspects of heart failure, check out our short (but information packed!) webinar – Update Your Care Plan: Heart Failure.

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