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Olivia Anstis, MSc(Hons), PGDipHlthPsych, MNZPB

Health Psychology Specialist

Claire O’Donovan, MSc(Hons), PGDipHlthPsych, MNZPB

Health Psychology Specialist

The GPs Role in Supporting Cancer Patients Community Treatments

South GP CME – August 2014

© 2011 Atlantis Healthcare | Commercial in Confidence

Overview

• Adherence to oral anti-cancer medication

• Case Study

• Strategies to assist adherence

• Common difficulties following a cancer diagnosis

– Strategies to assist with self-management


Non-adherence in oncology

• Cancer is evolving:– 2008: 12.7 million new cases– 2030: est. 22 million new cases

• Treatments are evolving:– Oral therapies more available

• Trending upwards - targeted therapy• Preferred by patients, but reduced monitoring by clinical staff (Eliasson, 2012)

– Focus shift from hospital treatment to treatment in the home• Oral agents more concordant with home treatment than infusion or

subcut

– 35% anti-cancer agents in US are oral

– Annual budget US $5-7 billion (2010), and rising 20-30% per year (Moseley & Nystrom, 2009)


Non-adherence to oral anti-cancer Rx

• Adherence can often be assumed due to the seriousness of the diagnosis (Eliasson, 2012)

• 0%-83% non-adherence rates - average 21% (Eliasson, 2011)

• Increases healthcare utilisation

– Longer hospital stays, 15% increase in costs (Banna et al., 2010; Eliasson, 2012)

• Reduces treatment efficacy and increases likelihood of adverse events

– Asthenia, nausea, muscle cramps, joint/bone pain (Banna et al., 2010;

Geynisman, 2013)


Non-adherence to oral anti-cancer Rx

• Creates spurious results in clinical trials

– inconsistent responses, incorrect dosing recommendations (Partridge, 2006)

• Shortens relapse and survival times (Partridge, 2006)

Interruption of imatinib therapy in patients with advanced GI stromal tumours (GIST) reduced two year progression free survival from 80% to 16% (Geynisman, 2013)


Non-adherence in oncology in New Zealand

• Paucity of studies

• Illness beliefs and beliefs about treatment (Corter et al., 2013)

– High fear of breast cancer recurrence associated with:

• higher concerns about taking Aromatase Inhibitors (AIs)

• Greater beliefs in necessity of taking AIs

• Cancer continues as the leading cause of death in NZ

– 18,610 new cases and 7,970 deaths annually

– $500 million spent annually

• To rise > 20% by 2021 (MoH, 2013)


Intentional Non-

Adherence Unintentional

Non-Adherence

Unintentional and intentional non-adherence



Case Study


Non-adherence amongst CML patients (Eliasson et al., 2011)

• Reduced adherence rates amongst patients with Chronic Myeloid Leukaemia (CML) taking imatinib (Glivec/Gleevec)– Reduces clinical response

– Increases healthcare costs

• Qualitative interviews

• 21 patients

• Explored CML patients experience of taking, or not taking imatinib

• Previously monitored adherence through medication events monitoring device (MEM)


Reasons for non-adherence

• Incorrect recall

– Patients encounter recall bias

– Tangible feedback highlights the discrepancy (MEM)

– “White coat adherence”

• Increasing doses around doctor appointments

– well as it could”

“I’ve taken imatanib 600mg for a few years now. I knew I was missing days but I didn’t realize how much I was missing. I asked how much I’d actually been missing. It worked out that I’d been missing 20% of the doses over a 3 month period. So it wasn’t working quite as it could do”



• Side effects were influencing adherence

– Higher starting doses = lower persistence

• Problem-solving with healthcare professionals allowed patient to continue with therapy

– Its not whether you get side effects, but how you cope with them that’s important

“So they said we’ll bring your dose down to 400mg, make sure you take it every day. The side effects haven’t been quite so bad, so its been more manageable to do that”


“I wouldn’t have thought it would have had that major impact

[to miss doses]. I believe you still have a lot of the medicine in your

body system. So I think you are still topping up, keep topping up, if

you’ve missed three, four days, then I don’t know..”

• Assumptions that medication ‘builds up’ in the body

• Faulty belief that missing doses doesn’t matter




• Underestimating impact of non-adherence

• Inadvertently reinforced by healthcare professionals

– “It doesn’t matter if you miss the odd dose”

“

“…I am tending to miss more now, because

at first I thought it was sort of life or death

if you miss a tablet, but now the doctors

have told me, you know, it’s not a big thing

if you miss one or two, so I tend to not

worry about it as much as I did previously”



• Several changed their pattern of adherence over time

– Adherence can decline when the patient feels well

“I think I stuck to it more rigidly at the beginning yes, I think so…//…

and since, when you get into cytogenetic remission and molecular

remission and everything, you sort of tend to breathe a sigh of

relief in some ways, because you sort of think, OK, its working…”


• Drug ‘holidays’ also taken to avoid side effects

“Because of travelling… I thought there was no way I was going

[on holiday] and being tired. So I did actually stop taking the

tablets for a week before I went, and I didn’t take them for the

first half of the week I was there…””



Study Conclusions

• Patients were committed to lifelong treatment

– Reinforced by treatment efficacy

• Side effects the key factor affecting intentional non-adherence

• Forgetting the key factor affecting non-intentional non-adherence

• Healthcare professionals can inadvertently reinforce non-adherence

– Important to get the full picture when patients report individual episodes (this Sunday or every Sunday?)

– Important also that the patient feels comfortable disclosing in the first instance


Study Conclusions

• Paucity of tailored adherence support for patients

– Unmet needs cited in lack of standard protocols for managing oral anti-cancer meds

– Lack of ready access to support services, with appropriate adherence advice

• Growing awareness of problem of non-adherence

• Patients still have the choice to discontinue their medication

– Important to understand the rationale and thinking behind this decision, and ensure informed consent is maintained



Adherence Solutions


Reasons why patients are adherent

• Not experiencing side effects

• Experiencing good clinical efficacy

• Experiencing side effects, but placing faith in the clinician– Patients described themselves as ‘conformists’ who would ‘follow doctor’s orders’


Addressing Adherence

• Reflexive and collaborative process

• Increases patient autonomy and decision making

• Enhances value of informed consent

• What doesn’t work?– Didactic instruction

– Written materials


Medication management

• Strategies to remembering– Set a routine

• Explain the process

– Incorporate into a daily activity e.g. brushing teeth

– Mornings better than evenings

– Use of prompts

• Visual: leave Rx next to TV remote

• Social: ask partner to remind them

– Use medication reminders

• Alarms

• Pill boxes

• MEMS

• Check in – changing and setting up new routines takes time and practice


Address medication beliefs

• Ask patients how they feel about taking their medicine– What are their concerns?

– What benefits have they noticed?

– Have they encountered any difficulties remembering?

– How are they managing any side effects?

• Addressing medication beliefs– Educate about treatment efficacy

– Elicit patient motivation for staying on medication

• May differ from biomedical understanding

– Mythbusting

– Boost social support



Cancer Survivorship Issues and Solutions


Cancer-Related Distress

“…a multi-determined unpleasant emotional experience of a psychological

(cognitive, behavioural, emotional), social and/or spiritual nature that may

interfere with the ability to cope effectively with cancer, its physical symptoms

and its treatment. Distress extends along a continuum, ranging from common

normal feelings of vulnerability, sadness and fears to problems that can become

disabling, such as depression, anxiety, panic, social isolation and spiritual crisis”1


Cancer Related Distress

Patients often report feeling like they are on an emotional roller coaster after a cancer diagnosis


Cancer Related Distress

There is no one-size-fits-all for what causes distressPhysical Social PsychologicalFatigue Role changes Low mood

Peripheral Neuropathy Work Issues Anxiety

Nausea/Vomiting Communication Issues Fear of recurrence

Diarrhoea/Constipation Financial Issues Distress

Pain Issues with Social Support Anger

Insomnia/Sleep issuesChanges in the way people treat Px –Cotton wool versus ignoring

Sadness

Lymphedema Guilt – ‘Did I cause my cancer?’ ‘I’m causing my loved ones pain’Lowered immunity

Hair Loss Social pressure to try the next new CAM thing

Existential Crisis

OstomiesBody image issues – impact on mood, relationships and daily functioningChemo Brain Social pressure to be “positive”

AnaemiaDaily reminders of current situation – scar, hair loss etc.

Blood clotting Unhelpful coping strategies – alcohol, drugs, smoking, denialHot Flushes

Effects on reproductive organs and sexuality

“Moving Forward” issues – loss of contact with medical support/reassurance, creating new normal


Why is it important to investigate distress?

• Distress will affect the way people think, feel and act. This can have an impact on:– Acceptance of treatment regimen

– Adherence to oral medication

– Communication with HCP’s

– Communication with support network

– Patients’ ability to engage in other health behaviours (e.g. smoking cessation)

– Inflammatory response – poor healing

– Recurrence - a trend is appearing in the literature where depression has been linked to an increased risk of a recurrence


Measuring Distress

NCCN Distress Thermometer


Dealing with Distress

• Distress is generally a normal response to a diagnosis, and the challenges that come up during and after treatment

• Patients can feel completely out of control both in terms of their emotions and their day to day life. Helping them to gain control in other places can be helpful for managing distress:– Firstly acknowledge the distress and normalise it – patients often think they are

the only ones distressed

– Anchoring patients to the consistent parts of their daily routine

– Getting patients to keep a weekly schedule so they know what is coming up

– Balance attention and distraction

– Self-care – Relaxation

– If talking it through is helpful, you can help the patient identify someone in their support network or a professional they can talk to


Communication and Cancer


Communication around Social Support

• Communicating with friends and family can be difficult when distressed or going through something difficult. Encourage patients to utilise social support in a way that is helpful for them:– This may require some assertive communication rather than the more common

passive “kiwi” communication e.g. “I need some space” or “I need some help”

– Reassure the patient that for the most part people supporting cancer patients like to be guided on what is helpful

• Some people don’t cope well with the ‘Big C’ and so pull away from a relationship when a friend is diagnosed with cancer. This can cause the patient a lot of distress:– Normalise the loss of a/some friend(s) so the patient knows it isn’t just them

– Acknowledge the grief that goes along with losing something/someone

– Gently bring the patients’ attention to who is there supporting them


Communication with HCP’s

• White coat effect – there is a power differential between doctor and patient. This makes it harder for some patients to communicate exactly what they want to say:

– Utilise general strategies for building rapport, i.e. eye contact, non verbal listening skills, not rushing the patient, collaborative decision making

• Patients take away about 5% of what is discussed in a consultation:

– Give summaries or written answers to their questions that patients can take away with them

– Try not to use jargon during the consultation – NZ has a low level of health literacy

– Check for patients’ understanding

• Patients vary on how much information is helpful for them to cope:

– Ask your patients if they are a blunter or a monitor and tailor the information you give


Communication with HCP’s

• Often GP support comes in once all the intensive treatment has finished. This is a time that cancer patients feel particularly vulnerable because they are no longer seeing their team of HCPs at the hospital weekly-monthly:

– Agreeing on a plan for management with the patient can help reassure the patient medical support is still there– not everyone will need the same level of input to feel supported


Difficult topics

• Bodies

• Sex

• Death


Opening a conversation

• Name it

– Call a spade a spade – it is sex, death, a breast• Cultural considerations

• Normalise it

– “Many people who have had cancer experience…”

• Empathise

– “It must be difficult for you”

• Collaborate

– “Lets see what we can do today to help with this”


Bodies


Bodies

• Reassure, reassure, reassure

• Involve partners where possible

• Reframe the changed body:

– I’m a survivor

– This scar saved my life

– Loss of physical stature.. growth in other ways??


Sex

• Sexual difficulties are common during and after cancer treatment:– Impotence– Vaginal dryness– Bodily changes – losses/gains, scarring, baldness (all over!)– Loss of libido– Loss of confidence

NORMALISE: “Its common for people who have had cancer treatment to have difficulties with sex/intimacy/in the bedroom.”

ASK: “If it’s a concern for you, I’m happy to talk things through today and see what we can do to help.”

PROBLEM SOLVING: Medication, perceptions of intimacy, building confidence


Death

• Anecdotally, patients feel in the dark about their prognosis:– HCPs won’t bring it up– Patients don’t want to know– HCPs anxious about giving an incorrect prediction– Disparate coping strategies – patients and carers

• NORMALISE: Be their advocate – offer to call the Specialist for them

• OPEN IT UP: “Are you worried if you are going to die?”

• REASSURE: “It must be really frightening for you.”

• BE PRACTICAL: wills, last wishes, guardianship, tying up loose ends

• CREATE A LEGACY: videos, letters, mementoes, creation of family rituals

Sleep

41


Sleep

• Causes of insomnia in primary care (Arroll et al., 2012)

– 19% of patients in the waiting room had primary insomnia– Of these:

• 50% (195) had depression• 48% (185) had anxiety• 43% (165) had general (physical) health problems.• 9% (34) had OSA• 2% (7) had delayed sleep phase disorder

– 15-30% of general population at any one time

• Sleep disturbance is very common amongst cancer patients:– Elevated anxiety, uncertainty– Effects of treatment– Pain, hot flushes…

Consequences of poor sleep

43

Headache

Drowsiness

Low Motivation

Lower Stress

Tolerance Mood Changes

Impaired Decision Making

Increased Sensitivity

to Pain

Lack of Energy

Irritability

Tiredness

Reduced Attention

Poor Sleep

Sleep

• Sleep is a psychophysiological phenomena

44

Sleep & anxiety

Anxiety Worry about multiple issues

Physical/bodily reactions

Sleep loss/insomniaWorry about not sleeping

Thinking must sleep or will never cope

ConsequencesFatigue/reduced energyConcentration problemsLowered tolerance levels

Limit Nicotine

Limit Caffeine

Limit Noise

Room Temp

Body Temp

Improve Air Quality

Limit Light

Bed

Exercise

Manage Diet

Limit Alcohol

Sleep Basics

Sleep Diary

47

Sleep Diary

48


Thank you

[email protected]

[email protected]

www.atlantishealthcare.com

Atlantis Healthcare


Reference

1. National Comprehensive Cancer Network Barry D. Practice guidelines in oncology –V. 1. 2002: distress management: National Comprehensive Cancer Network, 2002

2. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psycho-Oncology 2001; 10: 19-28

3. Carlson LE, Angen M, Cullum J, Goodey E, Koopmans J, Lamont L, et al. High levels of untreated distress and fatigue in cancer patients. British Journal of Cancer 2004; 90: 2297-2304

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