Findings

Patient education and communication

Patient education and communication

What is the challenge?
  • The complexity of AD and lack of known causes can make it challenging to explain/understand, and patients may have misconceptions about the causative role of allergies(a)(b)
  • Individual tailoring of information and advice is required as trigger factors and disease course differ, and the fluctuating nature of disease causes changes over time(b)
  • Lack of patient education can result in poor adherence (e.g. due to fear of corticosteroids)(c)
Providing education to patients, relatives and care givers, and communicating in a way, that improves their understanding of atopic dermatitis (AD) and how to effectively manage it
What is the goal/s of the intervention?

  • Improve patients’ awareness and understanding of AD and its causes

  • Support patients to effectively manage their AD and adhere to their personalised treatment regimen

  • Ensure patients and relatives have access to reliable sources of information and support

  • De-mystify any patient misconceptions regarding disease or treatment

  • Ensure patients are involved in their care plan (i.e. shared-decision making)

Who is often involved in the intervention?

  • Dermatologist

  • Nurse/medical assistant

  • Physician assistant

  • Comorbidity specialist (e.g. allergist, pulmonologist)

  • Psychosocial professional (e.g. psychologist, psychiatrist)

  • Paediatrician

  • Clinical pharmacist

  • Patient Group

  • Primary care practitioner (PCP)

  • Trainee dermatologist/medical student

What are the potential outcomes?

Patients

  • Improved understanding of AD (including clarification of any misconceptions) that empowers patients to take an active role in the management of their disease

  • Acceptance that AD is not their fault (i.e. they are not causing it)

  • Better management of their condition and its comorbidities, and involvement in care decisions

  • Decreased burden of AD and impact on QoL (through improved understanding, management and support)

  • Increased support for caregivers, resulting in higher quality of care provided for the patient at home

HCPs

  • Reduced demand for HCP time as patients are more empowered to self-manage and their AD is better controlled

  • Reduced demand for clinical knowledge from HCPs as patients are able to access the information from alternative reliable resources

Healthcare system

  • With patients managing their condition more effectively, there is reduced demand on centre services/resources, due to fewer appointments required

  • Improved long-term AD disease outcomes(d)

(a)

Lee J, et al. A Comprehensive Review of the Treatment of Atopic Eczema. 2016;8(3):181-190;

(b)

Dhar S, et al. Food allergy in Atopic Dermatitis. Indian J Dermatology. 2016;61(6):645-648. doi: 10.4103/0019-5154.193673;

(c)

Bieber T. How to Define Atopic Dermatitis? Dermatol Clin. 2017;35(3):275-281;

(d)

Zuberbier T, et al. Patient perspectives on the management of atopic dermatitis. The Journal of Allergy and Clinical Immunology. 2006;118(1):226–232;

What is offered as part of the intervention?

Topics often covered in patient education include:

  • AD disease

    • Causes of AD (myths/reality, e.g. genetics versus environment)

    • Recognition of AD burden (by HCP)

    • Chronicity and fluctuating course/nature of AD

    • Allergic (atopy) and non-allergic comorbidities


  • Medical management of AD

    • Treatment options (available and upcoming)

    • Treatment application and usage (including amount, frequency, duration and location of body)

    • Treatment outcome expectations

    • Management of flares and infections

    • Potential AD triggers (e.g. in the workplace)


  • Non-medical management of AD

    • Recommended care regimen (e.g. regarding hand washing, skin care, cosmetics and emollients)

    • Advice for living with the disease (e.g. management of itch, psychological coping mechanisms)

    • Relaxation techniques (e.g. to help manage itch)


  • Additional sources of reliable information or support they can access at the centre or elsewhere (e.g. Patient Group)

Components of good HCP-patient communication may involve:

  • Providing sufficient Q&A opportunity for patients and relatives

  • Offering access to different types of HCPs (who they may feel more comfortable asking questions to, or are specialised in different areas)

  • Allowing patients to contact HCPs in between consultations

  • Tailoring language and communication approach to patients’ age/health literacy level/culture etc. (e.g. using visual aids to support explanation)

  • Involving patients in their care plan decisions (i.e. shared decision making)

  • Providing access to materials and information to read in personal time (for both patients and wider patient network e.g. teachers)

  • Providing the opportunity for peer-to-peer (patient-patient) exchange (i.e. for patients to share medical/non-medical recommendations with each other from a peer perspective) e.g. via Patient Groups

  • Ensuring consistent information and treatments recommended across HCPs/specialties

  • Repeating information and education to patients and relatives over multiple consultations

  • Enabling convenient access to specialist AD advice and care (i.e. close to home)

  • Demonstrating empathy in regards to the impact of AD on a patient’s life

How has the intervention been implemented in different centres?

Note:    With input from the steering committee, we have categorised these activities by level of resource required to implement, however this may vary across centres/settings (e.g. depending on existing resources)

EASY
  • Dedicating time within existing consultations to provide patient education (e.g. ~5 mins)
  • Providing patients with written or online tailored intervention plans (e.g. using a patient information checklist)
  • Providing written or online educational materials (developed by centre, Patient Groups or third party e.g. treatment manufacturer), which may use visual aids to support understanding (e.g. explain AD skin barrier dysfunction)
  • Sharing websites or names of organisations (e.g. Patient Groups) where patients can access reliable sources of education and support
  • Ensuring consistency in communication (e.g. having the same HCP in patient’s consultation sharing the same information to patients across different department)
  • Enabling remote patient Q&A opportunities in-between consultations (e.g. via provision of email address or telephone number)
MEDIUM
  • Co-developing educational materials and treatment protocols/approaches across departments (to ensure consistency of information shared and care approach)
  • Providing access for patients to be seen by other HCPs and specialists in addition to the physician (e.g. advanced practitioner nurses [ANP], social workers, pharmacists)
  • Providing joint clinics/consultations with two or more specialists (at same time) for patients to receive information and ask questions
  • Enabling online Q&A opportunities in-between consultations (e.g. via centre online portal, closed electronic medical record communication tools)
  • Providing more frequent and/or longer patient consultations (e.g. 45 mins) to assist in delivering information to the patient in person
  • Photographing (or allowing patients to photograph) and saving images of skin to show patient AD progression overtime
  • Providing intensive education when AD patients are inpatients
  • Identifying centres that are providing structured patient education programmes (that patients could be referred to)
  • Providing ‘small-medium scale’ group education for patients (e.g. meetings, workshops, forums, schools)
  • Note: for these to be ‘medium’ resource, you may consider them being: standalone/infrequent, with small Patient Groups, limited number of HCPs/different HCP specialities involved and wide age range of patients per group
ADVANCED
  • Developing patient education websites/portals, videos, or mobile phone applications (by centre alone, or in collaboration with Patient Group/manufacturer)
  • Developing a patient education game (for paediatric patients to play)
  • Providing ‘larger scale’ and structured group education for patients (e.g. meetings, workshops, forums, schools)
  • Note: these may be multi-session/frequent, with large patients groups, more HCPs/range of specialists HCP involved
  • Identifying or creating ‘expert patients’ to educate and/or support patients at a peer-to-peer level (e.g. through a centre or Patient Group running a ‘train-the-trainer’ programme for patients)
  • Organising general public educational events (i.e. open access not only for AD patients)
  • Visiting patients at home/care home who are unable to attend consultations at centre
  • Launching community-based/satellite clinics to provide more convenient means of accessing information for the patient
Relevant centre case studies

Providing group education (meetings, workshops, forums, schools)

AD patient/family workshops, Hospital Italiano de Buenos Aires, Argentina

AD patient educational evenings, Inselspital (Bern), Switzerland

Eczema School, Aarhus Universitetshospital, Denmark

Education for different professionals and the general public, Hiroshima University Hospital, Japan

Interactive support groups, Medical Dermatology Associates of Chicago, USA

Multidisciplinary group based education programme, UKSH (Kiel), Germany

Nurse-led patient education, Linkou Chang Gung Memorial Hospital (Taipei), Taiwan

Allergy Camp, Dokkyo Medical University Hospital, Japan

Patient/family educational workshops, Hospital La Paz (Madrid), Spain

Patient and family education, Hospital Sant Pau (Barcelona), Spain

Patient forum, Linkou Chang Gung Memorial Hospital (Taipei), Taiwan

Provision of group therapeutic education, CHRU Brest, France

Transitional processes into adult clinic, UMC Utrecht, Netherlands

Involvement with wider AD community, Mount Sinai & Ichan School of Medicine (New York), USA

Patient education group, Dermatology and Treatment Center (Texas), USA

Role of biologic coordinator, Dermatology and Treatment Center (Texas), USA

Patient education materials, Hiroshima University Hospital, Japan

Providing consultations with other HCPs in addition to the physician

Dermatology Advanced Nurse Practitioner, UMC Utrecht, Netherlands

Enhanced role of the nurse, UMC Groningen, Netherlands

Nurse led 1:1 patient education, CHRU Brest, France

Nurse shared responsibilities, Aarhus Universitetshospital, Denmark

Nurse-led paediatric education session, Harrogate District Hospital, UK

Multi-disciplinary patient education, Cayre Clinical Center, Colombia

Provision of therapeutic education, CH Lyon-Sud, France

Role of clinical service coordinator, Hospital La Paz (Madrid), Spain

Role of the Advanced Nurse Practitioner, Inselspital (Bern), Switzerland

Nurse-led education consultations, Dokkyo Medical University Hospital, Japan

Medical assistant-led support, Dermatology and Treatment Center (Texas), USA

Providing personalised written materials

Cross department educational print outs, Linkou Chang Gung Memorial Hospital (Taipei), Taiwan

Enhanced role of the nurse, UMC Groningen, Netherlands

Extended HCP-patient consultations, Mount Sinai & Ichan School of Medicine (New York), US

‘My Eczema Treatment Plan’, Royal Devon & Exeter Hospital, UK

Patient education materials, Hiroshima University Hospital, Japan

Patient treatment checklist, M.L.F. Knuckles Dermatology (Kentucky), USA

Specialised atopic dermatitis outpatient clinic, Rabin Medical Centre (Petah Tikva), Israel

Developing patient educational materials/game

Improving Atopic Dermatitis Care by Paediatricians (IADCBP), Rady Children's Hospital (California), USA

Innovative education website (“Leef! Met Eczeem”), UMC Utrecht, Netherlands

Innovative smartphone application: “Zalf”, UMC Utrecht, Netherlands

Provision of group therapeutic education (including “Walk of Skin” game), CHRU Brest, France

'Virtual nurse' mobile device application, McGill University Health Centre (Montreal), Canada

Co-developing educational materials and treatment protocols/approaches across departments

Cross department educational print outs, Linkou Chang Gung Memorial Hospital (Taipei), Taiwan

Ophthalmologist screening appointments, Hospital La Paz (Madrid), Spain

Structured ophthalmology referral pathway, UMC Groningen, Netherlands

Creating longer and/or more frequent consultations

Flexible consultation length and frequency, M.L.F. Knuckles Dermatology (Kentucky), USA

Longer and frequent consultations, OHSU (Oregon), USA

Emphasis on patient education, KFMC, Saudi Arabia

More frequent and longer patient appointments, UKSH (Kiel), Germany

Offering joint HCP consultations to patients

Joint psychiatry-dermatology clinics, CHRU Brest, France

Joint psycho-derm clinic, Royal Devon & Exeter Hospital, UK

Onsite dermatology psychologist, Hospital Sant Pau (Barcelona), Spain

Organising general public educational events

AD patient committee, McGill University Health Centre (Montreal), Canada

National Eczema Day, CH Lyon-Sud, France

Public educational presentations, UKSH (Kiel), Germany

Providing intensive education to inpatients

Extensive inpatient and day care facilities, Rabin Medical Centre (Petah Tikva), Israel

Extensive inpatient facilities, University of São Paulo Hospital, Brazil

Inpatient education, UMC Utrecht, Netherlands

Visiting patients at home/care home or via community-based/satellite clinics

Community outreach clinics for rural populations, Harrogate District Hospital, UK

Community outreach consultations, M.L.F. Knuckles Dermatology (Kentucky), USA

Specialist Satellite Clinics, Rady Children's Hospital (California), USA

Specialised atopic dermatitis outpatient clinic, The Jikei University Hospital, Japan

Photographing (or allowing patients to photograph) and saving images of skin to show patient AD progression overtime

Communication via the patient portal, UMC Utrecht, Netherlands

Structured patient assessment tool, UKSH (Kiel), Germany

Dedicated dermatology photographer, UMC Groningen, Netherlands

Identifying or creating ‘expert patients’

Provision of therapeutic education, CH Lyon-Sud, France