Evolu&on of a pa&ent educa&on website
“CAHPepTalk.com”
Irene Mitchelhill CNC Dept. of Endocrinology,
Sydney Children’s Hospital, Randwick
Conflict Of Interest Disclaimer Statement
PENS Conference 2015
I have received educational support to attend this conference by Pfizer Australia. Pfizer have not had any input into the material within this presentation. I accept full responsibility for the contents of this presentation. The views expressed should not be taken as representative of Pfizer Australia.
Session objec+ves
“ A passionate idea leads to something amazing”
• Learn the process of developing & facilita+ng pa+ent educa+on using mul+media technology
• Learn the process of adap+ng pa+ent educa+on materials & resources to meet the needs of families in developing countries
• Learn the value of running with an idea: “CAHPepTalk.com” now has interna+onal exposure
Follow your dreams & never give up!
Session Outline
• The evolu+onary path taken • The concern for pa+ents with CAH • The needs of the CAH community • Moving from an idea to reality
• Outcomes: valida+on of content • Results • Moving with technology • Transla+on • The website • The mobile App.
• Clinician to researcher!
Congenital Adrenal Hyperplasia (CAH)
CAH is an recessively inherited “condi+on” resul+ng in: • Cor+sol deficiency …adrenal crisis • Aldosterone deficiency … electrolyte imbalance • Androgen excess …
• Ambiguous genitalia in the newborn (gender determina+on) • Virilisa+on & early puberty, short stature, infer+lity
Rare & unique “condi+on” affec+ng a small number of families. Incidence 1:10,000 -‐ 1:15,000, high carrier status high 1:50, 1:6000 in SEA
CAH: the issues
• Significant physical & psychosocial issues • Vulnerable: child & family
• Life threatening, inherited condi+on (Illness, injury, procedures • Treatment: life-‐long, mul+ple daily meds ®ular follow-‐up • Compliance essen+al to prevent poor outcome • Sick day management: essen+al
• Parents need a good understanding of the condi+on & treatment & sick day management procedures.
• Social support/ counselling • Standard educa+on: medical consult • Review: frequent: 1-‐2 weekly, then 3/12
• Educa+on: +ming is cri+cal to be effec+ve • needs to be ongoing, limited resources • Informa+on: simple, clear, concise, consistent
• Exper+se: limited to specialist centres • No formal educa+on processes available.
Management Issues
Impact of Chronic illness Parental Adjustment and learning…
– Impact of a sick child • the diagnosis, inherited condi+on, long term care • risk of adrenal crisis & fear of death
– Grief process • shock, denial, anger, disbelief, loss, delayed a_achment
– Literacy • cogni+on, comprehension, culture & religion.
Ini+al Aims
Improve pa+ent access to educa+on
a) Develop a psychosocial educa+on program (PEP) for families with Congenital Adrenal Hyperplasia (CAH)
b) Develop the program into an audio-‐visual DVD • for use as a pa+ent & family resource • program able to be facilitated by one health professional in outreach areas
A research journey
Mul+-‐staged project Stage 1: Semi-‐structured interviews Stage 2: Development & valida+on of CAHKAQ Stage 3: Development of the Psychosocial Educa+on Program(PEP)
Stage 4: Development of the DVD Stage 5: Transcript transla+on Stage 6: “CAHPePTalk.com” Stage 7: Emergency Hydrocor+sone mobile App.
• The Planning & evalua+on process guided the idea
• What did we aim to achieve: ( increased knowledge & coping) • What did the popula+on want • What I thought they needed • What change in health-‐related behaviours could we measure • Evalua+on process: what did they think?
“Beginning at the end”
• Solu+on focused: • parent interviews, focus groups, development of CAHKAQ,
• “Psychosocial Educa&on Program” • Development • Implementa+on • Evalua+on
“Health Educa&on: consciously constructs opportuni&es for learning for individual target groups”
Concept to reality
• Thema+c analysis: “within & between” case analysis • Impact of an inherited “condi+on”:
• Cogni+ve paralysis, shock, grief, fear, confusion • Overwhelmed by medical interven+ons, terminology, staff reac+ons • Frightened, burden, responsibility
• The emo+onal distress: • Unable to manage episodes of illness appropriately • Cannot give emergency hydrocor+sone • Anniversaries-‐ reminders
• Manage the “here and now” …hope for the future!
Stage 1: Parent interviews
• Past: Devasta+ng and emo+onally trauma+c.
• Present : Manageability easier with +me, in control
• Future: posi+ve, hope for future, concern for surgery, fer+lity
Parent interviews (cont)
What do families want?
• Hope! there is life ajer this and its normal – Social support & counselling – Access to support group: not ini+ally, but later. – See other kids coping normally – Informa+on at different ages and stages
• Health professional issues – be careful not paint a nega&ve picture! – Help parents to be alert …. but not alarmed…. when illness occurs
Stage 2: Development of the CAHKAQ
(CAH Knowledge Assessment Ques;onnaire) • Phase 1 -‐ Construc+ng test items
• Phase 2 -‐ Delphi Technique: used to establish “content validity”
• Phase 3 -‐ Pilot test CAHKAQ:-‐ “reliability & construct validity”
• Cronbach alpha = 0.72
Ques+ons with greatest error rate: incorrect/unsure Q17 -‐ If a person is pale and drowsy … (44%) Q21 -‐ Medical follow up is generally recommended… (44%) Q19 -‐ A person is at risk of adrenal crisis … (31%) Q12 -‐ Not taking hydrocor+sone causes … (31%) Q2 -‐ In CAH the body makes … (29%) Q8 -‐ Fludrocor+sone helps regulate … (29%)
Ques+onnaire valida+on
Preliminary work in this research program informed the Psychosocial Educa+on Program (PEP): +tled “The CAH Family Workshop”
• Overview of CAH • Adolescent transi+on & adult issues • Psychological aspects of CAH • Prac+cal aspects of Sick Day Care • Hands on injec+on technique • Discussion groups & a personal story
Stage 3: Development of the PEP
Results of the PEP • 4 CAH Family Workshops held over 2 years • 140 families from 3 children’s hospitals (mul&ple par&cipants)
– Ethics & informed consent -‐ pre & post test measures (knowledge, QOL, & filming for DVD)
– Group knowledge was gained overall & maintained over +me – Sick day management was challenging – Psychological evalua+on was posi+ve for this clinical group.
– Social competence/Internalising/externalising(CBCL), Parental percep+ons (CHQ) – Process evalua+on: 88% +ve: (content, useful, &me)
• Aim • Develop components of the Psychosocial Educa+on Program (PEP) into a DVD • facilitated by one experienced health professional • for pa+ents and families living with CAH in isolated country regions.
– Improving access to educa+on resources is essen+al. – Use of mul+media addresses access to informa+on
• Visual, auditory & psychomotor domains
Stage 4: Development of the DVD
Gaining popularity • accessible • watch, read, listen, review & repeat • learning at own pace • addresses literacy issue pitched at correct level • allows reflec+on (Krishna, et al. 2003) • an interac+ve component keeps interest. • Should not stand alone
Value of Mul+media formats
Stage 4: Moving with Technology -‐ DVD • Development of the DVD
• Filming recording & edi+ng PEP content • Key presenters: “image of trust & experience” • Transcribed verba+m for verbal clarity
– Process • Video edi+ng of presenta+ons • Total length of DVD = 1.5 hours in 20 min sessions • Evalua+on: 4 families reviewed final content
– Launched 2011 • Translated: Vietnamese & Indonesian
Stage 5: DVD transla+on
• Approached by “Caring Living as Neighbours” (CLAN) • NGO: improve health of children with chronic illness in resource-‐poor countries (Sth East Asia: Vietnam, Indonesia, Phillipines, Pakistan).
• Incidence is high (1:6000), popula+ons large, resources poor.
• Limited access to essen+al medica+ons, medical exper+se, resources.
• Works under a 5 Pillar structure to op+mise: medica+on, medical care, resources, family support, reduc+on in poverty.
Demographics Total&No.&Analysed&
245& Female& Male&& Ave&Age&&Years&
Average&time&to&diagnosis&
Classical&CAH&
Non&Classical&CAH/&Unsure&
Unknown&
Hydrocortisone&&&Florinef/&Hydrocortisone&
only&
Hanoi& 155& 79& 76& 8&(1J19yr)& <1&yr&&(1&@&4yr)&
102& 19/12&&Unknown&=16&
H&Fl&&&&&&&&&=&93&H&&&&&&&&&&&&&&&&=50&Unknown&=&&7&
HCMC& 66& 33& 33& 5&&
(19mthJ15yr)&
<1&yr& 34& 6/14&
&Unknown&=12&
H&Fl&&&&&&&&&=60&
H&&&&&&&&&&&&&&&&=&&6&Unknown&=&3&
Jakarta& 24& 14& 10& 5&(4&mthJ15yr)& <&1&yr& 16& 2/4&&
Unknown&=2&
H&&Fl&&&&&&&&&=&7&H&&&&&&&&&&&&&&&&&=&7&
Unknown&=&0&&
Top$graph$here$is$the$Demographics$of$the$3$centres.$$I$cannot$seem$to$add$the$title$above$&
Transla+on needed
• The PEP: a comprehensive resource – Transcripts & slides translated: 2 medical professionals (each language)
– translated word for word, line by line. – both English & Vietnamese / Indonesian (tracking transla+on) – Edited for cultural & lay understanding – transcripts narrated by Health services interpreter – IT/film/Web design: video-‐edited narra+on, film & slides.
• Other resources: translated – CAHKAQ, evalua+on, injec+on instruc+ons, school & healthcare plans
Percentage of incorrect answers !Summary!of!knowledge!deficits:!!!Knowledge!difficulties!
!Percentage!incorrect!or!unsure!>!3rd!tertile!
n=155!Hanoi!%!
n=66!HCMC!%!
n=24!Jakarta!%!
n=187!Australia!
%!Q4! The!chance!CAH!will!recur!in!a!family!is! 44.20! 39.39! 41.66! 17.3!Q9! The!main!reason!for!treating!CAH! 30.20! 40.90! 20.83! 17.7!Q11! In!an!adrenal!crisis!someone!urgently!needs!! 16.10! 30.30! !!!2.94! !!3.8!Q12! Not!taking!Hydrocortisone!causes! 36.24! 54.54! 54.16! 31.7!Q14! If!a!person!misses!a!medication…!they!should! 41.61! 45.45! 70.83! 30.8!Q16! If!a!person!has!slight!cold!….!they!should! 48.99! 34.84! 66.66! 19.8!Q17! If!a!person!is!pale!&!extremely!drowsy…! 54.36! 51.51! 79.16! 31.4!Q18! A!person!with!persistent!diarrhea!&!vomiting! 45.63! 37.88! 29.16! 13.0!Q19! A!person!with!CAH!is!at!risk!of!an!adrenal!crisis! 61.74! 65.15! 37.5! 24.9!Q20! Hydrocortisone!injection!should!be!given!into! 68.45! 71.21! 75.0! 24.3!Q21! Medical!followWup!is!recommended! 61.74! 91.21! 37.5! 38.9!Q22! Main!reason!for!wearing!a!medical!alert! 44.96! 51.51! 37.5! !!!4.9!!!
Stage 6: CAHPePTalk.com
• Mul+ media in health: • driven by pa+ent need, advocacy groups “immediate & ready access” to informa+on.
• In this era of “mul&media hype” informa+on must be factual, validated & pitched for the lay popula+on.
• Mul+media learning methods: • structured, pa+ent specific & culturally appropriate • appeal to all learners & those with literacy or language difficul+es.
• Internet access is worldwide: “CAHPepTalk.com” is accessible • developing countries lead the way
22nd June 2014 The Endocrine Nurse's Society of Australasia
Launching mobile technology
Internet reaches all!
No ma_er where !
Future of medicine
Hydrocor+sone Mobile App
• Any pa+ent with “Adrenal Insufficiency” • Download “Pfizer Meds App” via “Itunes /Google play” • scan the barcode of the vial of Hydrocor+sone or enter code
Emergency Solu-‐Cortef Injec+on Kit
Finding the “magic fit”
• Finding the balance: Nurse Clinician to Researcher! – Priori+sing full +me clinical work/pursuing part +me research – Team support and understanding
• Nursing v/s Medical research – Qualita+ve V quan+ta+ve analysis – significant psychosocial & educa+onal value
• Follow your dreams and never give up! • The value of running with a passionate concept
Grants • ENSA ( CAHKAQ) $ 5,000 • Sesqui New Staff support (Thema&c analysis) $19,400 • Nurses Registra+on Board (PEP) $ 5,450 • SCH Douglas & Lola: (DVD development) $10,000 Website funding: • APEG Nursing Professional Development Grant $10,000
– Developed in honour of Jenny Nairn (03/01/1959 -‐16/04/2010) – passionate Endocrine Nurse & a founding member of ENSA
Acknowledgments
CAHKAQ/PEP: pa+ents & families: SCH, CHW & JHCH – ENSA – ini+al research grant: 5 Gran+ng bodies in total. – Jennie King, Murray Fisher: Faculty of Nursing-‐ Sydney University. – Expert Endocrinologists, nurses & parents for Delphi & focus groups. – MN (Hons.) Supervisors: Jackie Crisp & Carolyn Briggs-‐ University of Technology Sydney. – Mentor: Late Professor Gabriel Antony
DVD film & ediEng: -‐ Medical Illustra+on/Clinical photography: University of NSW, Sydney
Web design: -‐ Nat Jackson:-‐ Jacksonspeed.com
Mobile App: -‐ Dalia Saad & Sonya Owen: Pfizer Australia
My family… Paul, (Hamish), Jessie & Angus.
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Educa+onal Resource for CAH. APPES scien&fic Mee&ng Nov 14-‐17 Bali Indonesia: P05.25 4. Mitchelhill I, (2010). Evalua+on of a psychosocial educa+on program for Congenital Adrenal Hyperplasia. Thesis -‐ Master of
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