The CHARMS Study

Cardiac Health and Assessment of Relationship Management and Sexuality

Funded by the Health Research Board

A study of sexual function, assessment and counselling for people with coronary heart disease in Ireland: current practice needs, assessment and best practice guideline development.

- Contents -

• People
• Rationale for the current study
• Underlying objective
• Specific objectives
• Description of the programme and plan of research to be undertaken
• PHASE ONE - Documenting Service providers’ views
• PHASE TWO - Patient Questionnaire/ Interview
• PHASE THREE - Developing best practice guidelines
• Implications of research findings
• Additional Steering Committee Members

People

Dr. Molly Byrne
School of Psychology
National University of Ireland
Galway Ireland
Tel: + 353 (0) 91 495182 Internal ext 5182
Email: molly.byrnenuigalway.ie

Dr Sally Doherty
Post-Doctoral Researcher
School of Psychology
National University of Ireland
Galway Ireland
Tel: +353 (0) 91495954 Internal ext.5954
Email: sally.dohertynuigalway.ie

Prof. Andrew W. Murphy
Department of General Practice
Clinical Science Institute
National University of Ireland
Galway Ireland
Tel: +353- 91-750 470
Email: andrew.murphynuigalway.ie

Prof. Hannah McGee
Department of Psychology
Royal College of Surgeons in Ireland
123 St Stephens Green
Dublin 2, Ireland
Tel: +353-1-4022418/28
Email: hmcgeercsi.ie

Rationale for the current study

• The idea for the current study emerged from data collected in previous research conducted by the authors (Byrne, Murphy & Walsh, 2005). In open-ended sections of questionnaires asking about psychological and physical wellbeing, a number of patients with Coronary Heart Disease (CHD) identified sexual and relationship problems as important areas which they felt were not being addressed in current practice.
• International literature has documented that sexual problems are common for patients with CHD, that they impact negatively on quality of life, and that both practitioners and patients are reluctant to address these concerns despite patients’ desire for more support in this area. Although there is recently published data on levels of sexual functioning and relationships among the general population in Ireland (Layte et al, 2006), there are no comparable data for those with CHD. As the experience of sexuality and related problems can be highly subjective and culturally influenced (Schwarz et al., 2005), it is important that these data are now gathered within an Irish context.
• No detailed information is available about current practice with regard to sexual assessment and counselling for patients with CHD in cardiac rehabilitation and primary care in Ireland. The Irish Heart Foundation includes some basic information in patient booklets with regard to resuming sexual activity after a heart attack or for those with angina. However, there are no specific guidelines readily available for patients and practitioners to access within an Irish setting. Sexuality is a complex area, heavily influenced by the values and belief systems of any given culture (Albarran & Bridger, 1997; Schwarz et al., 2005). Most of the research cited in this area is based on North American research; translating the findings from this research to an Irish setting needs to be done with care. It is important to consult in a meaningful way with patients and practitioners in order to assess needs and develop effective guidelines and eventually intervention strategies for an Irish setting. The development of such strategies has the potential to enhance patient care and improve quality of life for patients with coronary heart disease in Ireland.
• This study will use a mixed methods design, collecting quantitative descriptive data from patients and service providers in the first two phases of the study, followed by more in-depth qualitative research to develop best practice guidelines during the third phase of the study. While this research will focus on patients who have been diagnosed with CHD in Ireland, the researchers believe that the research will have broader implications to inform models of practice in assessment and management of sexual problems at a more general level and on an international scale.

Underlying objective

• To describe and explore the experience, assessment and management of sexual functioning for patients with CHD in Ireland, and develop best practice guidelines to improve health service provision in this area.

Specific objectives

• To document current practice and assess needs of service providers in cardiac rehabilitation and primary care in Ireland with regard to sexual assessment and management for patients with CHD
• To document, from a sample of patients with CHD, levels of sexual functioning, extent and causal attributions of sexual problems and experience of and needs in sexual assessment and management in primary and secondary health services. These data will be directly comparable to Irish general population data on sexual health and relationships from the ISSHR (Layte et al, 2006).
• To develop guidelines, in consultation with service users and providers, on best practice in sexual assessment and management for patients with CHD in Ireland. This objective will be informed by the findings from PHASES ONE and TWO; in addition, it will involve qualitative research to obtain the views of a range of key stakeholders (patients and service providers).

Description of the programme and plan of research to be undertaken

This research will be conducted over a three year period, from November 2008 to October 2011. There are three phases involving:

1. PHASE ONE: A survey of General Practitioners and Cardiac Rehabilitation Services

2. PHASE TWO: Telephone interviews with patients

3. PHASE THREE: A series of nominal group interviews with a number of combined patient/ service providers.

PHASE ONE - Documenting Service providers’ views

CARDIAC REHABILIATION CENTRES

• All cardiac rehab co-ordinators (n="38)" in hospital cardiac rehabilitation centres in the Republic of Ireland will be contacted by email from the Irish Association of Cardiac Rehabilitation (IACR) to inform them of the study.
• Cardiac rehabilitation coordinators and members of their team will be identified from the IACR database.
• The centres will then be sent out letters from the research team at NUIG giving an overview of the study and a copy of the questionnaire.
• Each cardiac rehabilitation coordinator and member of the cardiac team will be invited to complete the questionnaire and return it by post. Each member of the cardiac team will also have an opportunity to opt out of the survey by returning a freepost card and will not be contacted again.
• The survey will include questions on current practice within the cardiac rehabilitation programme in sexual assessment, counselling, policies, structures and protocols and where responsibility lies within the service for dealing with these issues. Also included in the questionnaire are perceived attitudes, beliefs and barriers to sexual health assessment. Service providers’ views will be sought on how sexual health problems are best addressed in cardiac rehabilitation care.

GENERAL PRACTITIONERS

• All cardiac rehab co-ordinators (n="38)" in hospital cardiac rehabilitation centres in the Republic of Ireland will be contacted by email from the Irish Association of Cardiac Rehabilitation (IACR) to inform them of the study.
• A proportionally representative sample of 200 general practitioners randomly selected from the Irish Medical Directory (IMD) 2008- 2009 will be sent a questionnaire (in order to receive a response rate of 50).This represents a 10% sample of the total population of GPs in the IMD. Each GP will also have an opportunity to opt out of the survey by returning a freepost card and will not be contacted again.
The questionnaire will include sections on frequency of reports of sexual problems from patients with CHD, perceived levels of GP knowledge, confidence levels and barriers in dealing with sexual health problems with coronary heart disease patients. Current practice for assessment and counselling of patients with CHD will also be assessed. Finally views will be sought as to how sexual health problems should ideally be managed within primary care.

Findings

• GP views about discussing sexual issues with patients with patients with coronary heart disease a national survey in Ireland
• Cardiac rehabilitation staff views about discussing sexual issues with coronary heart disease patients a national survey in Ireland

PHASE TWO - Patient Questionnaire/ Interview

• Patients for PHASE TWO and THREE of this study will be recruited from attendance lists from hospital cardiac rehabilitation centres in the Republic of Ireland.
• Eligible patients will have completed a programme of hospital cardiac rehabilitation not less than 2 months and not more than 2 years before recruitment into the study.
• This recruitment strategy has been selected as findings from the third national survey of cardiac rehabilitation service provision in Ireland carried out in 2005 suggest that cardiac rehabilitation is (1) increasingly widely available (95% of all hospitals now offer cardiac rehabilitation), (2) reaching large proportions of eligible patients (a median estimate of 60% of eligible patients attended cardiac rehabilitation, IQR 42 – 97%) and (3) representative of the wider population of cardiac patients (a pilot data collection study providing data for 3069 patients attending 16 cardiac rehabilitation centres from Jan – June 2005 suggested that these patients were similar to the population of all cardiac patients in terms of gender, age and GMS eligibility; Delaney et al., 2006)

Participants:

• A nationally representative sample of patients from cardiac rehabilitation centres in the Republic of Ireland will be recruited to provide the required patient sample size of 525 patients. Patients with acute coronary syndromes or presenting for revascularisation will be recruited from these centres. Patients included will have completed a programme of hospital cardiac rehabilitation not less than 2 months and not more than 2 years before recruitment into the study. All patients will be contacted as there are no a priori methods of identifying those who would respond that sexual relations were not relevant for them and in principle as it should be an issue to be explored with all patients.

Questionnaire Development:

• The aim of the questionnaire is to explore patients’ experience of sexuality, extent of sexual problems, causal attributions of sexual problems and levels of psychological well being. The questionnaire will also seek to explore the patients’ views on their own experience of sexual assessment and counselling services within cardiac rehabilitation and primary care and assess needs in this area. The patient questionnaire includes five sections: (A) Demographic information, (B) General health, (C) Sexual activity, (D) Sexual problems and (E) Sexual problems and heart condition.

Method:

• A representative stratified, random sample of hospital cardiac rehabilitation centres in the Republic of Ireland will be recruited.
• Hospital ethical approval will be sought from the relevant hospital ethics committees. Eligible patients will be selected from cardiac rehabilitation patient records by cardiac rehabilitation staff with support from the researcher.
• Patients will be sent a letter from their hospital consultant to inform them about the study, inviting them to participate and informing them that a researcher will contact them by phone in the following two weeks. To opt out- a free-phone number, email address or the return of a freepost card will be included in the information pack.
• The researcher will contact patients by phone from hospital. Patients will be asked if they are willing to participate in the research. If willing, the survey will be administered over the phone at a time suited to the participant. A telephone survey offers high levels of anonymity and cost-effectiveness, as well as providing scientifically sound, high quality data (Layte et al., 2006).
• Participants will be asked to indicate if they would be interested in participating in PHASE THREE of this study.

PHASE THREE - Developing best practice guidelines

• Best practice guidelines will be developed in consultation with service users and providers, for sexual assessment and management for patients with CHD in Ireland.

Participants:

• A sub-sample from PHASE ONE and TWO of patients, cardiac rehabilitation service providers and primary care service providers will participate in PHASE THREE. The primary aim of PHASE THREE is to explore views of patients and service providers in greater depth and achieve consensus with regard to developing best practice guidelines for this area. As outlined above, this phase will build on findings from PHASE ONE and TWO

Method:

• Respondents from PHASE ONE and TWO of the study, will be sent an invitation and cover letter detailing PHASE THREE of the study. They will also be sent a summary of the findings from PHASE ONE and TWO.
• Four nominal groups will be organised: two with patients and two with service providers (from cardiac rehabilitation and primary care); two will be held in the Dublin area and two will be held in the Galway area. Attempts will be made to achieve a reasonably representative group in terms of age, gender and coronary history for patients and work setting (cardiac rehabilitation and primary care) and work location (rural and urban) for service providers. Each group will have around ten participants and travel costs will be paid to participants as an incentive to help to avoid sample bias (Gallagher et al., 1993).
• There are two main stages of a nominal group: first, participants will be asked to openly generate a list of factors that are important to consider when addressing the provision of sexual assessment and counselling for patients with coronary heart disease. Once generated, participants will be asked to rank these factors privately in order of importance, according to their perspective. Second, the results from the private rankings are collated and presented openly to the group for discussion and clarification, after which participants are asked to privately re-rank.
• Final recommendations regarding the next steps necessary to formulate best practice and policy on sexual assessment and counselling for patients with coronary heart disease in Ireland will be developed through discussions with the study steering committee based on results from PHASES ONE, TWO and THREE of the study.

Implications of research findings

This research will provide valuable information about the personal experiences of patients in Ireland with coronary heart disease, examining the impact on sexual and interpersonal relationships, their wellbeing and their general quality of life. This information will be directly comparable with general population data from The Irish Study of Sexual Health and Relationships (ISSHR, Layte et al., 2006). It is essential to enable health service policy makers and providers to develop responsive and appropriate services for patients with coronary heart disease. The research will also specifically contribute to the development of practice guidelines on sexual assessment and counselling for patients with coronary heart disease in Ireland. In addition, the international literature includes only limited recommendations with regard to service provision in this area. Therefore, this research has the potential to influence international recommendations in this area.

Additional Steering Committee Members

Dr Tiny Jaarsma
Associate Professor
Department of Cardiology
University Medical Center Groningen
The Netherlands
Tel: +31 50 3613429
Email: t.jaarsmathorax.azg.nl, t.jaarsmathorax.umcg.nl

Kate O’Donovan
Clinical Coordinator
Master Misericordiae University Hospital
Eccles Street
Dublin 7, Ireland
Email: kodonovanmater.ie

• Disclaimer
• Privacy
• Copyright
• Accessibility