Patient Perspectives in Accessing Health Education, Skilled Treatment, and Safe Options for Incontinence: Meeting and Overcoming the Challenges and Obstacles.

Patient Perspectives in Accessing Health Education, Skilled

Treatment, and Safe Options for Incontinence:

Meeting and Overcoming the Challenges and Obstacles

ICS Workshop 5230 September 2009 San Francisco

Goals of the Workshop

1. To identify issues from the patients’ perspectives for establishing common goals

2. To speak to the needs of people in all nations, both developed and emergent, large and small, recognizing not just the clinical or technology obstacles, but the political, economic, and cultural barriers as well

3. To engage the audience in discussion and exchange of ideas

Speaker: Tomasz Michalek

The economic disparities to overcome because of difference among countries in coverage and reimbursement systems for treatment and care (aka the “financing” of healthcare)

• TOPIC I

Speaker: Lynne van Poelgeest

The call for protection and optimization of patient safety, rights, and dignity- How lives are impacted- How misguided policies can jeopardize patient safety, rights, dignity, and quality of life

• Topic II

Speaker: Diaa Essam El-Din Rizk, MD

Cultural and other social barriers preventing ease of access by patients within their own healthcare system or equality across borders

• Topic III

SELECTED COUNTRIESSELECTED COUNTRIES

Italy (EU member – Southern Europe) The Netherlands (EU member – Western

Europe) Poland (new EU member – Eastern Europe) Sweden (EU member – Northern Europe) USA

DIFFERENCESDIFFERENCES

Level of GNP (per capita, per health care) Policy (left, right, liberal, socialist, etc.) Priorities (treatment, preventive treatment,

prophylaxis) Lobbies (pharma sector, medical devices,

medical society)

SURGERY SURGERY WITH TAPE USAGEWITH TAPE USAGE

ItalyThe

Netherlands Poland Sweden USA

Medical specialists authorised to direct patient for surgery treatment

NO REIMBURSEMENT

?? Gynaecologist, urologist

Gynaecologist, urologist, other specialities, urotherapist, GP

Gynaecologist, urologist, urogynecologist, physican,

Medical specialists authorised to make surgery with tape usage

NO REIMBURSEMENT

?? Gynaecologist, urologist

Gynaecologist, urologist

Gynaecologist, urologist, urogynecologist

How often can reimbursement surgery with tape use can be done

NO REIMBURSEMENT

?? NO LIMIT NO LIMIT NO LIMIT

Patientco-payment

NO REIMBURSEMENT

?? 0% 0% 20%

Others NO REIMBURSEMENT

?? NO Waiting time might be long

NO

PHARMACOLOGICAL PHARMACOLOGICAL TREATMENT - OABTREATMENT - OAB

REIMBURSEMENTREIMBURSEMENT

ItalyThe

Netherlands Poland Sweden USA

Drugs NO REIMBURSEMENT

??? NO REIMBURSEMENT

Tolterodine, Solifenacin, Fesoterodin, Darifenacin, Oxybutynin

Trospium, Chloride,

Tolterodine,

Solifenacin,

Fesoterodin,

Darifenacin,

Oxybutynin

Patient co-payment

NO REIMBURSEMENT

??? NO REIMBURSEMENT

Patient never have to pay more than 180 Euro for a year´s consumption of drugs

Drug reimbursement varies between private and public insurance programs

Prescribed by NO REIMBURSEMENT

??? NO REIMBURSEMENT

Physician Physician, physicians’ assistant, nurse practictioners

Others NO REIMBURSEMENT

??? NO REIMBURSEMENT

NO NO

OTHER TREATMENTS OTHER TREATMENTS - REIMBURSEMENT - REIMBURSEMENT

PELVIC FLOOR MUSCLE TRAININGSweden, USA

BLADDER TRAININGSweden

BIOFEEDBACKSweden, USA

OTHER TREATMENTS OTHER TREATMENTS - REIMBURSEMENT- REIMBURSEMENT

ELECTROSTIMULATIONSweden

ACUPUNCTURESweden

ABSORPTION DEVICESABSORPTION DEVICES- REIMBURSEMENT- REIMBURSEMENT

120 60

NO LIMIT

150 3000

50

100

150

200

250

300

350

400

450

500

Vol

um

es

Italy Poland Sweden The Netherlands USA

Monthly limitations in volumes provided

ABSORPTION DEVICESABSORPTION DEVICES- REIMBURSEMENT- REIMBURSEMENT

ItalyThe

Netherlands Poland Sweden USAMedical indications for conceding of reimbursement

Urinary Incontinence Urinary Incontinence Malignant diseases, mental retardation, certain types of dementia, nervous system's diseases, malformations

Urinary Incontinence Urinary Incontinence

Patientco-payment

0% 0% 30% 0% 0%

Volume limit (pcs/month)

120 150 60 NO LIMITS 300

Types of absorption products

Female pads, male pads, pants and underpads

Female pads, male pads, pants and underpads

Female pads, male pads, pants and underpads

Female pads, male pads, pants and underpads

Female pads, male pads, pants and underpads

Price limit (EUR/month)

NO LIMIT NO LIMIT 17,5 EUR or 20,5 EUR (depending on medical indications)

NO LIMIT In case of nursing home care and hospitalization this based on diagnosis. In case of home care this varies from state to state and may be as few as one case of product per week.

ABSORPTION DEVICESABSORPTION DEVICES- REIMBURSEMENT- REIMBURSEMENT

ItalyThe

Netherlands Poland Sweden USAClassification (based on the level of incontinence)

NO YES NO Vary from county to county

NO

Prescribed by Urologist, gyneacologist,

Doctors via a signed mandate

Urologist, neurologist, surgeon, GP

Urologist, gyneacologist, specislist nurses, urotherapist, GP

In the case of institutional care (hospitals and nursing homes) the nursing protocol determines this

Distribution Medical shops, chemistry, ALS

Chemistry, via mail order company

Medical shops, chemistry

Delivered to patient’s home

Delivered to patient’s home by the state agency

REIMBURSEMENTREIMBURSEMENT- CONCLUSIONS- CONCLUSIONS Europe has one single economic

regulations policy but no health policy Each country has its own priorities Restricted access to various methods of

UI therapy (in most of the countries) Limited access to information Lack of international standards

REIMBURSEMENTREIMBURSEMENT- QUESTIONS- QUESTIONS

Do we need a golden standard for reimbursement?

Who should take responsibility to educate patients and medical society?

What about poor countries?

Discussion with Mr. Michalek

• What should the role be of the World Health Organization (or other similar group) with respect to standards for coverage of costs and patient access to technology and options?

• What should be the voice of patient advocacy groups like WFIP? Of professional societies such as ICS?

ObstaclesObstacles• Insufficient continence awareness worldwideInsufficient continence awareness worldwide

Continence issues still Continence issues still TABOO TABOO

• Lack of access to treatment, quality information and Lack of access to treatment, quality information and supportsupport

• ConsequencesConsequences– Negative effect on quality of lifeNegative effect on quality of life

• Action neededAction needed– New political prioritiesNew political priorities– Patiënts’ manifestoPatiënts’ manifesto

16/07/0916/07/09

Challenges (1)Challenges (1)

•Pharmaceutical industryPharmaceutical industry– Safe innovative and accessible medicinesSafe innovative and accessible medicines– EU losing ground on innovationEU losing ground on innovation– Inequality of accessible information on Inequality of accessible information on

medicines and treatment – eg. medicines and treatment – eg. ReimbursementReimbursement

•Ways of addressing problemWays of addressing problem::– Package (4 key goals) Package (4 key goals)

16/07/0916/07/09

Patient information: Patient information: Key goalsKey goals

•Recommendation: generate ‘safe’ Recommendation: generate ‘safe’ informationinformation

•Exchange information for further Exchange information for further collaboration – cross-border healthcarecollaboration – cross-border healthcare

•Ethical requirements: cultural differencesEthical requirements: cultural differences

•Raise visibility of existing (EU) Raise visibility of existing (EU) partnershipspartnerships

16/07/0916/07/09

Challenges (2)Challenges (2)

•Specific information onSpecific information on– Diseases and treatmentDiseases and treatment

•KeywordsKeywords– Objective and up to dateObjective and up to date– Patient orientedPatient oriented– Evidence basedEvidence based– Reliable, accessible, relevantReliable, accessible, relevant– Consistency Consistency

16/07/0916/07/09

•Political response (EU)Political response (EU)– Provision of information to patientsProvision of information to patients– Accurate, substantiated by evidence, up-to-Accurate, substantiated by evidence, up-to-

date and objective information on medicinesdate and objective information on medicines– Need for reliable information on internetNeed for reliable information on internet

•Patient informationPatient information– Quality informationQuality information– Increased active role in pharmaceutical areaIncreased active role in pharmaceutical area– More health conscious, increased awarenessMore health conscious, increased awareness

16/07/0916/07/09

Patient safety and Patient safety and information: EU actions information: EU actions • Recommendations on access + disseminationRecommendations on access + dissemination

– Review existing tools, awareness campaigns, promotion health Review existing tools, awareness campaigns, promotion health education, promotion Information Communication Technologyeducation, promotion Information Communication Technology

• Effective communication format Effective communication format

• Identify and promote best practices Identify and promote best practices

• Further develop (EMEA) database on medicinal Further develop (EMEA) database on medicinal products authorised in the EUproducts authorised in the EU

• Evaluation Evaluation – review 2 yearsreview 2 years– co-operation and share experiences at EU levelco-operation and share experiences at EU level

16/07/0916/07/09

Patient information: what is at Patient information: what is at stake?stake?• Multiple informationMultiple information

– Different providersDifferent providers– Diverging objectivesDiverging objectives– Quality and accessQuality and access

• FocusFocus– Disease and treatment informationDisease and treatment information– Dissemination electronic and non-electronic Dissemination electronic and non-electronic

informationinformation– Availability of ‘safe’ quality informationAvailability of ‘safe’ quality information

16/07/0916/07/09

For stakeholdersFor stakeholders

• Map patient needsMap patient needs

• Promote best practices inPromote best practices inhealthcare settingshealthcare settings

• Promote multidisciplinaryPromote multidisciplinaryapproaches among healthapproaches among healthprofessionalsprofessionals

16/07/0916/07/09

Some general conclusions (1)Some general conclusions (1)

• Challenge: to invest in high quality and accessible Challenge: to invest in high quality and accessible information: treatments and medicinesinformation: treatments and medicines

• Recognition of role of national authorities, Recognition of role of national authorities, healthcare professionals and competent authoritieshealthcare professionals and competent authorities

• Benefit of mobilising knowledge and resourcesBenefit of mobilising knowledge and resources

• Consideration and adoption of national initiatives to Consideration and adoption of national initiatives to promote cross-border healthcare in relation to promote cross-border healthcare in relation to continence issuescontinence issues

• European information libraryEuropean information library16/07/0916/07/09

Some general conclusions (2)Some general conclusions (2)

• Development of coherent and unified strategyDevelopment of coherent and unified strategy

• New approach stakeholdersNew approach stakeholders

16/07/0916/07/09

Access and disseminationAccess and dissemination

•For EU Member StatesFor EU Member States– Review existing tools, continence awareness Review existing tools, continence awareness

campaigns, promotion health education and campaigns, promotion health education and information communication technologyinformation communication technology

•For the CommissionFor the Commission– Support promotion, capacity building, exchange Support promotion, capacity building, exchange

informationinformation

•For stakeholdersFor stakeholders– Education needs, promotion best practices and Education needs, promotion best practices and

multidisciplinairy approach professionalsmultidisciplinairy approach professionals16/07/0916/07/09

Core quality principlesCore quality principles

– Objective and up to dateObjective and up to date– Patient orientedPatient oriented– Evidence basedEvidence based– Reliable, accessible, relevantReliable, accessible, relevant– ConsistentConsistent

16/07/0916/07/09

WFIP Charter of WFIP Charter of PatientsPatients’ ’ RightsRights

16/07/0916/07/09

• 1. Receive treatment2. Access to services without discrimination3. Given a correct diagnosis4. Obtain information5. Given options 6. Participation in the decision process7. Access to therapy8. Access to public toilets9. Provided check-ups and updates10. Access to multidisciplinary care

Discussion with Ms. van Poelgeest-Pomfret

• How is the internet best used for issuing cross-border, timely, up-to-date public health educational content?

• Should ICS contribute to the EMEA database?• Who should be the final authority on

“evidence-based” choices?

Introducing Diaa E. E. Rizk,MSc, FRCOG, FRCS, MD

• Professor of Obstetrics & Gynaecology, Ain Shams University, Egypt

• U.K. postgraduate studies and fellowship• >150 research articles and published abstracts• Medical advisor to the WFIP Steering

Committee

Introduction• Pelvic floor health in women must be addressed from

a broader outlook that falls in the health status/roles of women.

• The health status in any one society cannot be understood apart from the cultural factors that determine the individuals’ attitudes towards health matters and their behavior in seeking health care.

The Middle East is Peculiar

• Male-dominated culture- patriarchy- represents a strong factor in shaping the health behavior of women.

• Attitudes towards pregnancy, childbirth and women’s health are rooted in the broader milieu of culture.

• Formal health services may be bypassed and under-utilized, even when available.

The Middle East Paradox• A pro-natal society with an average total fertility rate

>4% and a female life expectancy at birth of >70 years.

• Urinary and fecal incontinence rates of 20.3 and 11.3 % were reported from the UAE.

• Incontinent women rarely seek medical help because of social traditions, cultural beliefs and inadequate public knowledge.

I- Cultural Beliefs

It is common that incontinent women continue to live silently because of the embarrassment that a woman may feel in admitting incontinence even when she is aware that it may be related to childbirth.

II- Knowledge Barrier• Urinary incontinence is perceived by the majority of

women as a neurological or senile disorder rather than a gynecological condition caused by childbirth or menopause.

• Women’s knowledge level of the causes, diagnosis and available treatment options for urinary incontinence has a positive impact on health-care seeking behavior.

III- Religion

• The life style and social norms of women might be different and are principally dictated by their religious faith - Islam in the vast majority.

• Praying is a daily and ritually-prescribed activity in Moslem women that involves kneeling down during praying and requires absolution after urination or defecation for cleansing.

III- Religion

Interference with praying ALONE can severely impair the quality of life of incontinent Middle Eastern Moslem women and highlights the cross-cultural and ethnic differences in women’s attitudes toward incontinence.

IV- Socialization of Health Role

• The intimate and sensitive nature of gynecologic diseases in a strict and conservative socio-religious environment significantly influences a preference for same gender physician.

• Most women thus feel more comfortable to consult a female gynecologist because of embarrassment during pelvic examination and reproductive counselling, religious beliefs and socio-cultural values.

V- Perceptions of Childbirth• Popular beliefs consider pregnancy and childbirth as

natural episodes in the female’s life.

• Cesarean delivery does not represent a socially accepted option based on this traditional perceptions.

• This observation has an important bearing on counseling of women about the benefit/risk ratio of elective cesarean delivery.

VI- External barriers to care

• Limited access to and/or inadequate health care facilities.

• Inconvenience of consultation because incontinence clinics are not clientele-friendly.

• Low expectations from health care.

• Fear of medical encounter.

• Incurred service cost.

Economic burden of UI• Cost is associated with UI whether the woman is

treated or NOT.

• If a woman is afraid to seek medical attention, then diagnostic and treatment costs will be zero.

• Costs are also incurred when UI is untreated. These include routine care costs (disposable garments and laundry), consequence costs (falls and hospital admissions), indirect costs (lost productivity) and intangible costs (pain, stress and suffering).

Recommendations

• Expert medical advice to women in the Middle East is necessary to correct the myth about incontinence being normal or untreatable.

• Education of more women and health professionals is required in the region about the process of micturition and defecation.

Recommendations

• A constructive way is needed to disseminate information to Middle Eastern women about incontinence because of its adverse effect on the quality of life.

• National health policies should be formulated to improve delivery of incontinence care and accessibility, cost and public image of incontinence services.

Audience Input to Discussion

• Further Suggestions/Recommendations to help these women?

• What are the best avenues for introducing public health education and objective information to improve quality of life of those with symptoms, while maintaining cultural sensitivity?

Take Away Messages1. There is the need to build a consensus

and work for common goals. This is best accomplished by first sharing experiences of everyday people.

2. Cross border healthcare must happen globally, not just in Europe.

3. We must recognize and accommodate differences among nations and cultures.

Take Away Messages (cont’d)

4. Interventions and solutions may differ among countries, but goals can be common and universal.

5. Patient advocacy groups should adopt a common charter of patients’ rights as guiding principles.