Learning From Heart Failure Nurses and Patients: Exploring Their Perspectives in the Management of Depression and Anxiety in Primary Care Settings
Conditions: Heart Failure, Depression, Anxiety
Sponsor: King's College London

 
 
 
 
Learning from Heart Failure Nurses and Patients: Exploring their Perspectives 
in the management of depression and anxiety in primary care settings 
 
 
 
 
 
 
Protocol Date: 20.08. 2020 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
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Introduction 
Heart failure (HF) is a complex clinical syndrome manifested by serious and progressive signs 
and symptoms. It is characterized by inability of the heart muscle to pump enough blood to 
meet body’s blood and oxygen requirements (American Heart Association, 2017). According 
to the European Society of Cardiology (ESC) (ESC, 2016) heart failure (HF) is a clinical 
syndrome that results in decreased cardiac output and may be accompanied with high 
intracardiac pressure during rest or with stress (ESC, 2016). HF induces many changes in a 
person’s life affecting activities of daily living including breathlessness, chest pain and fatigue 
with limited exercise tolerance affecting their ability to function independently.  
 
With increased life expectancy and an aging population, the prevalence of HF is increasing 
worldwide. The estimated number of the prevalence of HF cases from 2002 to 2014, increased 
by 23% in United Kingdom (UK) (Conrad, 2018). As per the hospital diagnoses, estimates 
show that there are up to 920,000 people living with HF in the UK (British Heart Foundation, 
2018). In year 2017-2018 in England, 500,000 people were diagnosed with heart failure (NHS 
Digital, 2018). Moreover, the ESC published that the prevalence of HF in developed countries 
is around 1-2 % among adults and is rising up (≥10%) among people over 70 years of age. It 
also indicated that at the age of 55 years, the lifetime risk of developing HF is 33% for males 
and 28% for females (ESC, 2016).  
 
With the increased prevalence of HF, there is increased cost of HF related healthcare services, 
as HF hospitalization place a major burden on healthcare services worldwide. The overall 
management of HF and the frequency of hospital admission leads to increased healthcare 
expenditure and cost (Farre, 2016; & Lesyuk, 2018). AHA predicted that with the ageing 
population, this disease may reach epidemic proportions (American Heart Association, 2017). 
This will increase the healthcare burden as the cost of proving quality care to HF patients is 
ranked among the leading healthcare expenditures in the US (American Heart Association, 
2017). In United Kingdom, the increased utilization of medical services places an extra burden 
on the NHS budget as it costs more than £2 billion a year (BHF, 2016).   
 
The physiological symptoms of HF such as breathlessness can lead to increased hospitalization. 
Due to the pathological changes induced in HF, many patients develop depression and anxiety. 
 

 
 
 
 
 
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Anxiety is unpleasant feelings of unease, worry or fear that many people experience, and cause 
negative emotions and thinking (Tully et al., 2014). Anxiety is a normal feeling unless it 
becomes constant or when anxious people fail to control their worries and it starts affecting 
their daily lives (Wells, 2018b). Symptoms of anxiety can be physical and include restlessness, 
sleeping difficulties and palpitations (Palacios et al., 2018). For those with HF, they may 
become anxious due to the activity limiting symptoms of their HF and the associated 
breathlessness. Anxiety disorder were found to be responsible for adverse outcomes in 
coronary artery disease but the association between it and HF is less clear (Celona, 2018) and 
was under-researched. Therefore, in this study anxiety will be explored in HF.       
 
Depression is a common comorbidity in HF due to the pathological similarities between both 
conditions. With depression, patients are unable to carry out activities of daily living or to 
function at home or work for at least two weeks (Lesperance & Frasure-Smith, 2000). 
Depression is considered as a treatable serious medical illness that negatively affects the way 
people feel, think or even they act, and it can be classified as mild, moderate or severe. 
Depression may lead to loss of interest in activities, appetite change, changes in sleep pattern, 
increased fatigue, feeling worthless and hopeless, difficulty in concentration and developing 
ideas of attempting suicide (Halaris, 2009; Frasure-Smith & Lesperance, 2010). Many HF 
patients develop depression and the prevalence of depression found to steadily increase from 
11% to 42% as the class of New York Heart Association (NYHA) functional status increases 
from I to IV (Silver, 2010) (i.e. patients become more symptomatic with HF and their prognosis 
worsens).  
 
The American Heart Association (AHA) (ACCF & AHA, 2013) guidelines on depression and 
coronary heart disease recommended the consideration of depression as an independent risk 
factor for poor prognosis in acute coronary syndrome which is known as a leading cause of HF 
(Lichtman et al, 2014). Also, the AHA HF guidelines considered depression as a common and 
important comorbidity in HF that can lead to poorer clinical outcomes and poor Health-Related 
Quality of Life (HRQOL) (ACCF & AHA, 2013).   
 
Studies (Marti, 2013; Sherwood, 2011; Nieminen, 2015; Gheorghiade, 2013; Moraska, 2013; 
Wallenborn, 2013;  & Hawkins, 2013) have reported that depression is  associated with 
increased hospitalization and death and worsens clinical outcomes in HF. Depression in HF 
also found to be closely associated with increased outpatients and emergency department visits 

 
 
 
 
 
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(Moraska, 2013) and of all-cause mortality (Gathright, 2017; Moraska, 2013; Freedland, 2016;  
& Adelborg, 2016). Moreover, patients with worsening depressive symptoms were found to be 
at higher risk of death for up to one year following hospital discharge (Freedland, 2016). 
Studies (Gottlieb, 2004; & Hwang, 2014) also reported that Quality of Life (QOL) scores were 
significantly worse for HF patients with depression. The evidence clearly showed that 
depression in HF increases healthcare expenditure and cost (Wallenborn, 2013). Therefore, it 
is crucial to effectively detect and manage depression in HF that may lead to improvement in 
QOL and improved life expectancy.  
 
The ESC HF guidelines highlighted the importance of routine depression screening with a 
validated questionnaire. It also emphasized on initiating treatment for depression for all heart 
failure patients including the use of psychosocial interventions, pharmacological therapy or 
exercise training (ESC, 2016).  
 
The National Institute for Health and Care Excellence (NICE) guidelines (NICE, 2016) on 
heart failure emphasized the importance of treating depression in heart failure but there were 
no specific treatment options for HF recommended in the document (NICE, 2016). Due to the 
clinical effects of depression in HF, it is important to effectively assess and treat depression as 
remission from depression found to improve outcomes (Jiang, 2011). In Southwark and 
Lambeth, inpatients diagnosed with HF are being assessed for depression. The community-
based HF patients are being assessed for anxiety and depression using PHQ-9 and GAD-7. 
However, the frequency and the process of assessment need to be further explored. The HF 
community nurses works through the KHP partnership with Guy's and St. Thomas’s and King’s 
College Hospital to provide the integrated heart failure service in the local area of Southwark 
and Lambeth in South London. The integrated heart failure team consists of heart failure 
specialist community nurses and consultant cardiologist with two pharmacists (Guy's and St 
Thomas' NHS Foundation Trust, 2019). The service provides specialist care in both the hospital  
 
and community with support for GPs on HF diagnosis and management. The aim of the 
integrated heart failure team in the community is to provide the HF treatment effectively, help 
patients understand and manage their symptoms and support with lifestyle changes.  
 
Even though, the community HF nurses have extensive role in managing HF patients in the 
community, their role in assessing anxiety and depression; and providing psychological 

 
 
 
 
 
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treatment need to be further explored. The community-based HF patients who are diagnosed 
with depression are usually referred for psychological treatment (IAPT or 3DLC). The type of 
treatment depends on the severity of their depression and the extent to which depression is 
affecting clients’ self-management of HF. So, for persistent and mild to moderate depression 
or if the depression is not related to HF, the patients will be referred for Improving Access for 
Psychological Therapies (IAPT) for treatment. While, for moderately severe to severe 
depression and whose depression affects their management of HF, patients will be seen by the 
team of 3 Dimensions for Long Term Conditions (3DLC). However, the process of providing 
treatment and type of therapy offered is not known and need to be further explored.   
 
The London Cardiac Clinical Network (LCCN) in 2017 recommended that all HF services (in 
hospital and the community) must be knowledgeable regarding the process of referring patients 
to specialist services including IAPT and should understand the local pathway for referral. 
Based on this, they recommended that Commissioners must ensure the availability of 
community services for HF patients that can optimize the medical therapy, provide self- care 
support, psychosocial support and exercise-based rehabilitation. The LCCN also recommended 
that secondary care heart failure specialist should have direct access to these services. Support 
from the LCCN in 2017/18 and 2018/19 reported that follow-up and community care can be 
improved by enhancing collaboration with the London Mental Health Clinical Network in 
order to upskill healthcare professionals in IAPT services thus can support people with HF and 
depression. Also, by promoting an understanding to those working in HF services of local 
pathways for referral to specialist IAPT services. (LCCN, 2017). This will enable the 
community HF nurses to be able to provide holistic care which includes physical, mental and 
social care needs.  
 
Unfortunately, the current literature shows the gap in depression and anxiety assessment and 
treatment in the community. Therefore, there is a need to assess the process by which 
community HF nurses assess and manage depression and anxiety.  This current study builds on 
our recent systematic review (phase 1) (Helal, et al, submitted) which illustrated that CBT 
could be effective in improving depressive symptoms in HF, but more studies are needed to 
build on these findings. The findings from this review will be used in this current study to 
examine how community HF nurses are assessing, managing and treating depression and 
anxiety in community-based HF patients. Also, to identify community-based HF patients’ 
views and experiences regarding depression and anxiety assessment and treatment.  

 
 
 
 
 
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Study objectives and purpose 
In this current study, online focus group and qualitative telephone/online interviews will be 
undertaken to explore the community heart failure nurses’ and community-based HF patients’ 
views and experiences in managing depression and anxiety; and to assess whether COMPASS 
a web-based intervention would be useful. 
 
With the COVID-19 pandemic extra measures were taken to protect HF patients who are 
considered as clinically vulnerable (shielding). This impacted on patients access to treatment 
and health care services, community networks and support from family and friends. It is 
anticipated during the pandemic this has had a deleterious impact on individuals’ mental health 
with increased social isolation, anxiety about care and treatment, and risk of poor outcome if 
contract COVID-19. This study will explore the impact of COVID-19 on the psychological 
wellbeing of community-based HF patients. 
 
Research Question 
How is depression and anxiety being assessed, managed and treated in community-based HF 
patients; and what is their views on the use of web-based intervention?  
 
6.1. Aims 
To explore community HF nurses’ and patients’ views and experiences in managing 
depression and anxiety and to assess whether COMPASS a web-based intervention would be 
a useful intervention.  
 
Primary objective 
To explore community HF nurses’ and patients’ views and experiences of managing depression 
and anxiety and to assess whether COMPASS a web-based intervention would be useful. 
 
Secondary objectives  
1) To conduct online focus groups with community HF nurses (n=5) and qualitative 
telephone/online interviews with community-based HF patients (n=8) within Lambeth 
and Southwark NHS Trusts. 
2) To synthesise the data obtained from online focus groups and qualitative telephone/online 
interviews using thematic analysis. 

 
 
 
 
 
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3) To understand how depression and anxiety is managed in HF patients and whether web-
based intervention would be a useful intervention. 
To explore the impact of COVID-19 on community-based HF patients’ depression and anxiety 
level changes to management processes. 
 
Study design  
A qualitative methodology will be employed using online focus group and qualitative 
telephone/online interviews. In this current study online focus group will be undertaken with 
community HF nurses (n=5) and qualitative telephone/online interviews with community-
based HF patients (n=8). Online focus group allows for expression of personal opinions, 
perspectives and experiences regrading an issue of interest. The synergy of the online focus 
group allows participants to collectively brainstorm together, add on others’ ideas and this may 
provide rich and large amount of opinions, issues and concepts (Brinkmann, 2015).   
 
Even though qualitative telephone interviews are used less frequently than the traditional face-
to-face interviews (Opdenakker, 2006; Sweet, 2002), it can be a useful data collection method 
(Carr & Worth, 2001, p. 521). The participants of qualitative telephone interviews were found 
to feel more comfortable being interviewed over the telephone and talking more freely than 
face to face interviews (Novick, 2008). The qualitative data obtained from telephone interviews 
were reported to be rich, comprehensive and of high quality (Chapple, 1999; Kavanaugh & 
Ayres, 1998; Sturges & Hanrahan, 2004; Sweet, 2002). In comparison to face-to-face 
interviews, the qualitative telephone interviews were less costly (Chapple, 1999), can increase 
access to different geographically located participants (Sturges & Hanrahan, 2004; Sweet, 
2002; Tausig & Freeman, 1988) and is safer for the interviewer (Carr & Worth, 2001; Sturges 
& Hanrahan, 2004). Qualitative telephone interview also allows more anonymity (Sweet, 2002; 
Tausig & Freeman, 1988), privacy (Sturges & Hanrahan, 2004), and decrease in social pressure 
(McCoyd & Kerson, 2006). 
 
Qualitative methodology was deemed the best method to meet the study aims and to understand 
how community HF nurses are assessing, managing and treating depression and anxiety in 
community-based HF patients; and what they think of using a web-based Intervention (i.e. 
COMPASS). Qualitative methods are a useful method to explore the depth of participants’ 
views and opinions related to an issue of interest, and to capture participants’ interpretations 
regarding a concept. Online focus group is useful for the researcher to grasp how those who 

 
 
 
 
 
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take part perceive the process and feel comfortable including experiences and emotions around 
a particular topic (Barbour, 2005). Barbour (2005) highlights how focus group enables the 
researcher to observe record and analyse the group’s interactions to include this in the 
presentation of findings. 
 
Subject inclusion criteria 
Inclusion criteria for Community-based HF patients: 
1) Community-based HF patients with clinically established HF diagnosis (confirmed HF 
diagnosis) in Lambeth and Southwark Boroughs who have mild to moderate symptoms 
of depression with/without anxiety confirmed by PHQ-9 (5-14) and GAD-7; 
2) Patients with NYHA class I-III; 
3) Capacity to provide informed consent; and 
4) Proficiency in English language so can fully respond to verbal and written material. 
 
Inclusion criteria for Community HF nurses: 
1) All community-based HF-nurses employed in Lambeth and Southwark Boroughs who 
are registered with Nursing Midwifery Council (NMC) will be invited to participate in 
the study; 
2) Capacity to provide informed consent;  
3) Community HF-nurses who are actively providing care to community-based HF 
patients; and 
4) have access to internet connected computer or device and technology for Microsoft 
(MS) Teams. 
 
Subject exclusion criteria  
8.2.1. Exclusion criteria for community-based HF patients: 
1. Community-based HF patients under 18 years of age;  
2. Participants who are deemed not to have the capacity to consent; 
3. Patients with cognitive impairment or dementia confirmed by medical records; and 
4. Community-based HF patients with NYHA class IV. 
5. Patients with severe depression and/or having suicidal ideation. 
 
Exclusion criteria for Community HF nurses:  
1. Nurses working with inpatients or in the OPD departments; and  

 
 
 
 
 
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2. Nurses who are not employed as community HF nurses. 
3. Any community HF nurse who do not have access to internet or online technology.  
 
Study procedures 
Subject recruitment 
A purposive sampling will be used to capture data from community heart failure nurses and 
community-based HF patients who meet the inclusion criteria. Participants will be recruited 
directly by GSTT community HF services in Southwark and Lambeth Boroughs as they have 
an established community HF service.  
 
Patients recruitment: 
Participants will be recruited from Guys and St. Thomas’s community-based HF services in 
Lambeth and Southwark Boroughs through discussion with community HF lead nurse. The 
invitation letter and participants information sheets will be sent by email to HF lead nurse and 
community HF nurses and they will be asked to identify community-based HF patients to 
participate in the study. The information sheets include contact details inviting volunteers to 
email or phone the researcher. Alternatively, community-based HF patients who are willing to 
participate can give their contact details to the nurses who will send it over to the researcher. 
Once this contact is received the researcher will contact possible participants via participant’s 
preferred method (phone, online or email) to offer the opportunity to discuss what would be 
involved in more details and answer any question. Inclusion criteria (described earlier) will be 
used to assess eligibility to the study. In addition, the researcher will arrange a time to call back 
the participants who are not ready to decide regarding participation in the study. 
 
Nurse recruitment: 
The community HF lead nurse will be approached by the researcher via telephone/email to 
allow approaching the community HF nurses. Invitation letter and participant information 
sheets will be provided by the researcher via email. Participants will be given time to read the 
information and respond via email or telephone at which further information on the study will 
be provided and any questions will be answered. 
 
Procedure for online focus groups: 
The online focus groups with community HF nurses who consent and meet the eligibility for 
this study will be conducted by the researcher. The online focus group may take 60-90 minutes 

 
 
 
 
 
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with breaks in between as this time period reported with less participants fatigue (McCoyd and 
Kerson, 2006). The emphasis will be open-ended form of conversation that can provide 
opportunities for rich discussions and sharing of personal experiences and interpretations.  
 
The date of the online focus group will be decided according to community HF nurses’ 
preferences. A time will be agreed with their manager when all of the community HF nurses 
can meet as a group. The PIS and consent form will be sent to all community HF nurses by 
email. The consent form will be signed ahead of time and gathered online. Similarly, baseline 
demographic data will be sent and collected online. The community HF nurses will be involved 
in the online focus group that will be conducted using Microsoft teams. A link to the online 
focus group will be sent by the researcher to all community HF nurses with the agreed date and 
time. The online focus group will have a skilled moderator who is the researcher’s supervisor 
(co-investigator). The moderator will moderate the session and will deal with any arising 
technical issues. 
 
The discussion with community HF nurses will include their perspectives about depression and 
anxiety assessment and management process and what they think of web-based intervention. 
Then, the community HF nurses will have a short break. Immediately after the break, a 
COMPASS team member will join the online focus group and will demonstrate the COMPASS 
web-based intervention to the community HF nurses. Community HF nurses will be allowed 
to ask questions regarding COMPASS before the COMPASS team member leaves the online 
focus group. Once demonstration is complete and the COMPASS personnel has left the online 
focus group, the researcher will take over and will assess community HF nurses’ perspectives 
regarding COMPASS. The participants will be asked if a similar intervention will be useful to 
community-based HF patients and which aspects of COMPASS they feel is relevant and 
important in HF. Issues around potential barriers and facilitators for implementation will also 
be explored.  
 
Procedure for the Qualitative telephone/online interviews  
For the community-based HF patients, qualitative telephone/online interviews will be 
conducted with each participant at their preferred time and method. Due to COVID-19, the 
participants will be interviewed in their own home at a time that suits them. Qualitative 
telephone/online interviews may take 60-90 minutes. The consent form will be sent online to 
community-based HF patients who have access to the internet and email. Participants who do 

 
 
 
 
 
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not have internet access a recorded consent over the telephone will be obtained. This will be 
done by the researcher who will read the consent form to the participants and they will be asked 
for their verbal consent on each statement and their answer will be recorded e.g. Do you agree 
to…? YES, NO. Once consent is obtained, the researcher will email the community-based HF 
patients a video link to COMPASS before they engage with qualitative telephone/online 
interviews. This video link is a demonstration of the COMPASS web-based intervention and 
the researcher will encourage them to view the video so they can share their views about 
COMPASS during the qualitative telephone/online interview. For participants who do not have 
access to email or the internet, the COMPASS will be explained to them by the researcher. They 
will be encouraged to explore the concept of web-based intervention, what services and 
resources the clinicians need to consider when introducing web-based interventions to people 
who do not have access to the internet etc.    
 
At the start of the qualitative telephone/online interviews, rapport will be established with the 
participant in person (Burke & Miller, 2001; Carr & Worth, 2001) and  predeveloped interview 
script will be used to introduce the study at the beginning of the interview (Burke & Miller, 
2001). The discussion with community-based HF patients will include their perspectives about 
depression and anxiety assessment and management process and what they think of web-based 
intervention. Then, the participants will be asked about using web-based intervention for the 
management of depression and anxiety in general and about COMPASS intervention in 
specific if they have viewed the video. The participants will be asked if they think that a web-
based intervention will be applicable to them and if they feel that it can be useful in HF. Also, 
the community-based HF patients will be asked to identify the potential barriers and facilitators 
for implementation of any web-based intervention.  
 
Data to be collected 
The demographic form will be sent to community HF nurses and they will be asked to complete 
and return this via email to the researcher before the online focus group.  
The demographic form will also be emailed to community-based HF patients and they will also 
be asked to complete and return this via email to the researcher before the qualitative 
telephone/online interview. For community-based HF patients who do not have email access, 
the researcher will read the information required from the baseline demographic form and will 
ask them to provide an answer before the interview starts.  
 

 
 
 
 
 
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Data handling and record keeping 
Data collection will include note taking, digital encrypted Dictaphone and remarking 
participants’ nonverbal cues when possible. The online focus groups using encrypted Microsoft 
(MS) teams with community HF nurses will be audio recorded using digital encrypted 
Dictaphone. The qualitative telephone/online interviews with community-based HF patients 
will be in a private room and will be audio-recorded using digital encrypted Dictaphone. The 
participants will be assured that privacy and confidentiality will be maintained, as the 
researcher will be sitting alone in a private room during the interview.  
 
Field notes on the group interactions and processes will also be transcribed by the researcher. 
Thematic analysis assisted by N-vivo 12 will be used to allow the development and ‘saturation’ 
of themes and categories. 
 
An online consent form will be sent to community HF nurses which will be signed prior to the 
scheduled online focus group. For community-based HF patients, the consent form will be 
recorded at the start of the interview, and the participant will be asked whether they agree with 
each statement read by the researcher e.g. Do you agree to…? YES, NO.  
 
All the online collected consent forms, participants personal data and qualitative data 
recordings and transcripts will be encrypted before they are uploaded to a secure and encrypted 
cloud storage area provided by KCL and will only be accessible by researcher and the two co-
investigators. Once the study has been completed, the recordings will be destroyed by deleting 
them from the encrypted and password protected file sharing cloud. 
 
Sample size: 
This study will include five Community HF nurses and eight community-based HF patients, 
13 in total (n=13). A total of five community HF nurses (n=5) will be recruited for the online 
focus group and eight community-based HF patients (n=8) will be recruited for the qualitative 
telephone/online interviews. Online focus group can vary in size but tend to average between 
6 to 8 but it is recommended to reduce the number to 4-5 participants for online focus group. 
Smaller group size (around six) are advised where the topic is controversial, where the 
participants have considerable knowledge or are likely to have strong views on the subject. The 
qualitative telephone interviews will include eight community-based HF patients. 
 

 
 
 
 
 
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DATA ANALYSIS: 
The qualitative date from online focus group will be entered into a computer-assisted 
qualitative data analysis package (NVivo 12). The verbatim transcription will be conducted for 
the audio data obtained from online focus group. Coding will be based on the research 
questions as well as emerging themes. Field notes on the online group interactions and 
processes will also be transcribed. The qualitative data from qualitative telephone interviews 
will be transcribed using NVivo 12. Data Coding will be done, and emerging themes will be 
identified.  
 
Thematic analysis will be used to analyse the themes. Final categories and themes will be 
determined using a consensus approach to resolve any differences in interpretation.The data 
will be managed using NVivo 12 to organise the ongoing analysis, themes and categories.  
 
Ethical considerations 
An application to NHS R&D and IRAS is currently under preparation for submission. The 
community HF nurses will email the consent form to the researcher before the online focus 
group takes place. The community-based HF patients will send the consent form either via 
email if they have internet access or they will be consented verbally and recorded at the 
beginning of the qualitative telephone/online interview.  
 
During recruitment of the participants, the researcher will discuss the purpose of the study and 
the criteria for participation. The researcher will assure all the participants that anonymity will 
be provided, and they can withdraw at any time. Participants will also be informed that no harm 
will result from taking part in the study or even by refusing to participate. It is not anticipated 
that participation in the study will be stressful.  However, before the online focus group or 
qualitative telephone/online interviews commences, it will be explained to all participants that 
they do not have to answer any questions they do not wish to or that make them uncomfortable. 
In addition, the online focus group will be co-facilitated by the co-investigator who is a mental 
health lecturer with extensive experience in clinical mental health practice and psychological 
therapy.  
 
Moreover, it will be clearly explained to all participants that all data will be pseudo-anonymised 
during transcription and that data will be stored securely under a study number whereas 

 
 
 
 
 
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comments quoted in any reports, results, published papers or feedback will not be linked to any 
individual.  
 
Reporting and dissemination 
The study will be published in a peer-reviewed scientific journal. 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
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