The pituitary gland is extremely important for regulating the functioning of the hormones within the body, and it is particularly vulnerable to the development of benign non-cancerous tumours called adenomas. These tumours are the main cause of problems associated with the pituitary gland. These growths can lead to an over- or under-production of various hormones throughout the body. Research has estimated that there are between 50 000 and 70 000 patients with pituitary problems in the UK, equating to 0.08–0.11% of the population (Pituitary Foundation, 2016). By far, the most common type of tumour (about half of all cases) is the ‘non-functioning’ tumour. Despite not producing any hormones itself, it can cause headaches and visual problems or can press on the pituitary gland, causing it to stop producing the required amount of one or more of the pituitary hormones. This effect can also be produced in response to treatment for pituitary tumours, such as surgery or radiotherapy.
Common pituitary conditions apart from adenomas are acromegaly (an adenoma causing excess growth hormone), adult growth hormone deficiency (resulting from damage to the pituitary gland or its blood supply), craniopharyngioma (a very slow-growing cyst-like tumour most commonly found in children), Cushing's disease (over-production of cortisol), diabetes insipidus (problems with the production, or action, of the hormone vasopressin), hypopituitarism (under-production of hormones by the pituitary gland) and prolactinoma (prolactin-producing tumour). In the early stages, each of these conditions presents an array of symptoms, including mood swings, problems with memory and concentration, fatigue, headaches, and weight changes. The combination of vague symptoms and the rarity of these conditions tend to mean that diagnosis for many patients is a very long process (Pituitary Foundation, 2016).
Many pituitary conditions impact on day-to-day functioning, not least due to the required drug treatments (e.g. hydrocortisone) to regulate hormones (Pituitary Foundation, 2016). These conditions require life-long monitoring and management, which is notoriously difficult, and patients often experience high levels of distress, which are often not recognised or addressed by healthcare professionals (HCPs) (Osbourne et al, 2006). As a result, pituitary conditions have been found to have a considerably negative impact on quality of life (Osbourne et al, 2006).
Part of the difficulty in understanding the effect of pituitary conditions is the lack of research on the needs of patients and how they manage their care (Jackson et al, 2008). In particular, further research is needed to understand the psychosocial needs of patients, including the role of support groups like the Pituitary Foundation in the UK.
Set up in 1994, the Pituitary Foundation's main objective is to provide information and support to help individuals with pituitary conditions to manage the day-to-day issues they may face. The Foundation offers many resources to its members, including access to emotional and psychological support for their diagnosis. To this end, the Foundation has a website that provides information on each pituitary condition. In addition, it produces a number of publications, ranging from simple leaflets describing each condition to longer booklets and a regular magazine that identify key issues in living with various aspects of the conditions, which can be ordered by both patients and their HCPs. The Foundation's resources are evidence-based and designed by experienced researchers and HCPs in the field. It also offers support through patient conferences and local support groups run by volunteers. Additionally, there are a number of patient helplines, including one provided by a specialist endocrine nurse, and a series of webinars, which provide information and a chance for patients to talk to experts.
While there have been a number of charities set up to support patients with specific pituitary conditions, the Pituitary Foundation is the one with the largest membership and most educational materials, offering support to patients with any pituitary condition. It has been proposed that education is the best resource to prevent medical decline in patients with pituitary conditions (Arlt and Allolio, 2003; Chapman et al, 2016). Taylor (2012) suggested that if an individual has little information regarding their illness, they will find it harder to adjust to their diagnosis and to adopt adequate and effective coping mechanisms. This suggests the importance of the role of both HCPs and the Foundation in establishing what pituitary patients know in reference to their condition, as well as helping to identify what they need to learn to enable them to be better equipped to cope with their condition on a daily basis.
The local support groups and buddy system offered by the Foundation may be especially beneficial, as they allow the exchange of life experiences and expertise between individuals with pituitary conditions. Previous research suggests that social interaction for individuals with health conditions is beneficial, as it can facilitate social adjustment (Feeney and Collins, 2015), reduce depressive symptoms (Pfeiffer et al, 2011), and even extend the individual's life (Holt-Lunstad et al, 2015). The present study aimed to explore patients' experiences of interacting with the Pituitary Foundation, in particular, the forms of support that have helped them to manage their condition.
Method
Participants
Recruitment to the study took part in two stages. In stage 1, the study was advertised at the Pituitary Foundation Annual Conference and through local support groups in the South West of the UK. Ten individuals (four men and six women aged 37–72 years) with a pituitary condition took part in interviews about their experiences of having pituitary conditions and being involved with the Pituitary Foundation. The authors had intended to continue data collection until data saturation but were unable to recruit further. Therefore, they decided to utilise a survey conducted for the Pituitary Foundation to include qualitative questions to identify if the wider population had had similar experiences. Therefore, in stage 2, 2000 members of the Pituitary Foundation were asked to complete a survey about having a pituitary condition and their experiences with the Foundation. Of these, 1062 participants responded (254 males, 488 females and 6 who did not state their gender), with 748 responding to qualitative questions similar to those posed to the interviewees in stage 1. Respondents in stage 2 ranged in age from under 18 years to over 65 years. The survey consisted of seven sections, most of which consisted of quantitative questionnaires about the experiences of the members when managing their conditions and the access to services they had received through the Pituitary Foundation (these data are reported elsewhere). The final section of the survey consisted of open-ended questions on their experiences of living with a pituitary condition, quality of life and access to support. Surveys were sent out to members either as hard copies or via a link to a Survey Monkey version. Ethics approval was obtained from the University Faculty Committee. As recruitment was conducted through the Pituitary Foundation, Health Research Authority ethics approval was not required.
Data collection and analysis
The interview recordings from stage 1 were transcribed and analysed using inductive thematic analysis based on the method described by Braun and Clarke (2006). Transcripts were scrutinised to identify the themes associated with having a pituitary condition and having contact with the Pituitary Foundation. The open-ended survey responses from stage 2 were analysed using qualitative content analysis (Hsieh and Shannon, 2005) to identify key themes.
In order to ensure the rigour of the data analysis, independent validity checks were carried out at different points in the research process. Annotated transcripts and surveys showing the coding and emerging themes generated by the first author were checked by the second author so as to verify the analytical process and enable clarification of ambiguities. The final thematic structure was discussed by all three authors, and interpretation of the data was agreed.
Results
The analysis revealed four main themes with associated sub-themes, plus one over-arching theme outlined in Table 1.
| Theme | Sub-theme | Over-arching theme |
|---|---|---|
| Life-changing diagnosis |
|
Geography |
| The Foundation as a source of support |
|
|
| Attendance at support groups | ||
| Finding the Foundation |
|
Theme 1: life-changing diagnosis
The main issue that participants felt they needed support with was the life-changing aspects of being diagnosed with a pituitary condition. The diagnosis had been overwhelming and transformative, in particular, changing participants' perception of normality, and it had a significant impact on their daily lifestyle, wellbeing and how they felt others perceived them (Table 2). This major life-changing diagnosis had two specific features: (a) difficulties with condition management and (b) mental health impact.
| Theme Indicative | quotations |
|---|---|
| Theme 1: life-changing diagnosis | ‘There are long-term implications and effects of pituitary problems on all aspects of life’. S77 |
| Sub-theme: difficulties with managing condition | ‘I spent three nights in hospital from being admitted into A&E with people going “We don't think he has had a stroke, we don't think he has had a heart attack”.’ I was then discharged… The next morning I was called back in to see a neurologist in the stroke team who suddenly started talking about pituitary apoplexy and that instigated the start of testing…which decided that I was adrenal insufficient’.P10 |
| Sub-theme: mental health impact of diagnosis | ‘There were dark days when I first was diagnosed with Cushing'Rs really dark days; in fact I didn't think I was going to make it’. P7 |
| Over-arching theme of geography and relationship to theme 1 | ‘I had to give up work. I had a professional job in the city…I haven't been able to have a family…for a long time it was very difficult not having a family and not having a profession at that age [thirties]’. P8 |
Sub-theme (a): difficulties with condition management
Participants mentioned how the diagnostic process can be lengthy, as HCPs often have insufficient knowledge about pituitary conditions owing to their rarity, and there is limited access to HCPs specialised in pituitary conditions in certain areas of the UK. Participants talked about long processes with medication trial and error until a balanced treatment was identified and about HCPs often having poor understanding of the need for precise treatment regimens (Table 2).
Sub-theme (b): mental health impact of diagnosis
Participants often mentioned how their diagnosis has made life a battle. Many described facing a lot of uncertainty when first diagnosed and profound fear regarding their health and wellbeing. There were significant psychological impacts associated with diagnosis and subsequent life with the condition, such as depression and reduced self-esteem, with treatment having drastic effects on physical and emotional wellbeing (Table 2).
Over-arching theme of geography and its relationship to theme 1
Participants described a life-changing journey through diagnosis and onwards. In some cases, this involved literal geographic changes associated with work and home life due to being unable to meet employment obligations, changes to the way they engaged with their environment or having to move closer to family members so that support is more readily accessible. These changes can result in a changed life trajectory and expectations, often associated with emotional distress exacerbated by the lack of acknowledgement, support and advice from HCPs.
There are also practical geographic issues associated with healthcare. Hospitals and other medical environments are associated with a sense of reassurance induced by access to medical knowledge and expertise perceived to be available at those locations. To discover this is not the case heightens the emotional distress associated with the condition, especially when it is ignored or the patients' lived experience is undermined by HCPs (Table 2).
Theme 2: the Foundation as a source of support
Participants found the Foundation to be very useful. Theme 2 describes how participants accessed the support available from the Foundation. There were two distinct aspects to the support received: (a) support with condition management and (b) reducing isolation (reducing the sense of being the only person with the condition).
Sub-theme (a): condition management
All participants described the invaluable role of the Foundation in the provision of information, support and access to professionals who understand pituitary conditions. The Foundation was praised for providing information on diagnosis, conditions, adapting to life with a pituitary condition and condition and lifestyle management. Individuals accessed these resources through other members of the Foundation, the local support groups and the Foundation's website (Table 3).
| Theme | Indicative quotations |
|---|---|
| Sub-theme: condition management | ‘The endocrine nurse has helped me a number of times to deal with my diagnosis and understand the suggested treatment from my doctors’. S6 |
| Sub-theme: reducing isolation | ‘You're talking to somebody who knows what you mean… You do not have to start from scratch… can pick up handy tips…’. P1 |
| Over-arching theme of geography and relationship to theme 2 | ‘Oh it helps me understand the condition, understand what to do about it, understand the effects of the medication…it helps me to find the specialist medics that I should see…It helps me feel not alone and having the nurse at the end of the support it just so reassuring…’. P9 |
Sub-theme (b): reducing isolation
Participants felt that support groups not only helped them gain reassurance but also created a space that helped them achieve a shared understanding, as individuals disclosed their mutual experiences of living with a pituitary condition. Other specific aspects of the Foundation that helped to reduce isolation included the annual conference and services provided for patients' families.
Over-arching theme of geography and its relationship to theme 2
The Foundation can help participants to advance their care in a number of ways, not least in providing the understanding and reassurance that enable people to manage their condition. This is a useful service for patients who are feeling let down by their local hospital; it can help people to navigate the NHS and to locate the HCPs best placed to assist them.
Theme 3: attendance at support groups
Local groups are one way in which the Foundation supports patients with pituitary conditions. Regular membership at meetings and strong leadership were identified as key to the success of local groups. Leadership was important both in terms of attracting members and managing group cohesion, part of which was sharing similar values and interests (Table 4).
| Theme | Indicative quotations |
|---|---|
| Theme 3: attendance at support groups | ‘I think the only negative thing is getting folk to come to meetings, but that's not so much a problem now with a group leader’. P5 |
| Over-arching theme of geography and relationship to theme 3 | ‘Their condition is diagnosed. It's at that point that they need to know about the Pituitary Foundation…there aren't support groups everywhere…there's lots of gaps’. P4 |
Over-arching theme of geography and its relationship to theme 3
The Foundation does not have local support groups in every area of the UK. It was clear that local groups are highly valued, with some travelling long distances to attend. Yet, many participants were unable to travel, and others were in locations too remote to enable travelling (e.g. the Channel Islands). Not being able to attend a local group can be circumvented by members using other aspects of support provided by the Foundation, such as the information provided on the website. This highlights how the online resources of the Foundation also help to keep members connected.
Theme 4: finding the Foundation
Participants discussed how they had come into contact with the Foundation. Many participants described how initially, finding information about the Foundation was quite challenging, with some coming across it by accident or through research. Only one participant out of the 10 in stage 1 of the study was given information about the Foundation soon after diagnosis. A similar situation was observed in stage 2 (Table 5). This lack of awareness was associated with the need for publicity.
| Theme | Indicative quotations |
|---|---|
| Theme 4: finding the Foundation | ‘There was certainly nothing when I realised I was a pituitary patient and I firmly thought at that point that it needs something’. P4 |
| Sub-theme: publicity | ‘…targeting places where patients are likely to be…like doctor's surgeries, hospitals that type of thing, citizen advice bureaus, and places like that would be another way to make sure there are information leaflets about the pituitary where potential patients are’. P7 |
| Over-arching theme of geography and relationship to theme 4 | ‘I think I was playing on the internet and found the Pituitary Foundation and discovered that they had gotten a lot of written information…’. P9 |
Sub-theme: publicity
Individuals need information regarding the Foundation as soon as possible after their diagnosis, but the general experiences of the participants tend to suggest that this is not happening. It seems so straightforward: HCPs merely need to signpost newly diagnosed individuals to the Foundation, as does happen in some areas. The participants were aware that the Foundation has been working hard to ensure a better referral pathway from hospitals, but there was recognition that it is an uphill struggle to get HCPs on board.
Over-arching theme of geography and its relationship to theme 4
It would appear that the Foundation is often not signposted by HCPs but discovered by individuals on the internet. This kind of searching for resources can be done from a safe and familiar environment (home), making it something that is doable in a situation where individuals may feel let down by the medical services, and thus isolated and vulnerable. Signposting has a literal geography associated with it—if the necessary psychosocial understanding and help cannot be provided by the hospital or GP, then those places need to have information about how to locate the Foundation for their patients. HCPs have considerable social power that they could use to great effect in helping patients with pituitary conditions find the Foundation.
Discussion
Pituitary conditions affect patients physically, mentally and emotionally, and therefore have an impact on patients' interactions with their environment. There are multiple challenges to be faced and dealt with in managing these conditions. It is clear that the participants of this study find the work of the Pituitary Foundation both highly valuable and important.
Comparison with existing literature
This study has found that patients with pituitary conditions view their diagnosis as ‘life-changing’, particularly in relation to the need for careful condition management and the impact on mental health. This echoes previous research, which has identified the difficulties that patients experience with condition management (Osbourne et al, 2006).
One of the identified strengths of the Foundation was the variety of ways it provides information and support, with local support groups considered especially important. Other researchers have found that support groups can provide a vital boost to the wellbeing of individuals with long-term health conditions, as well as acting as much-needed sources of information (Dennis, 2003).
Implications for research and practice
Long-term conditions can have a lasting impact on an individual's general health, wellbeing, quality of life and mental health, and they impose a significant financial burden on the NHS (Naylor et al, 2012). In an over-burdened NHS, the third sector are increasingly important in assisting and empowering patients to manage their conditions. The Pituitary Foundation is well placed to provide the specialist medical knowledge and emotional support needed by patients. Despite the importance of the work of the Foundation, there is clearly a lack of referral to the Foundation by HCPs, with patients often happening upon the Foundation during information-based internet searches when newly diagnosed. While it is important to note that there are other barriers to patients accessing such third-sector services, such as denial about their need for such services (Kogan et al, 2013) and issues with patient activation (patients lacking the knowledge, skills or confidence to manage their own healthcare needs) (Greene et al, 2015), the participants in this study did report a lack of referral to the Foundation. This may be due to a lack of awareness on behalf of HCPs, which needs to be addressed.
Study limitations
A limitation of stage 1 was the small sample size. While this is less important in qualitative analysis, it was felt that saturation had not been reached, leading to incorporation of data from stage 2. Throughout the qualitative content analysis, the themes highlighted in the original interview study were supported and data saturation was reached (no new themes emerged). Therefore, the authors are confident that the analysis presented here can be generalised more widely to the population of patients with pituitary conditions who are members of the Pituitary Foundation.
Conclusions
The present study identified the value of the Pituitary Foundation as a vital source of support and information for patients as they try to accept and manage their condition. That the organisation provides long-term support, not just immediately after diagnosis, but throughout the patient journey, matters to patients. However, there are difficulties with signposting to the Foundation and the services available through the organisation. This may, in part, explain why so many people with pituitary conditions throughout the UK are still not members of the Foundation. Greater publicity of the Pituitary Foundation and improved referral from HCPs are required.