The pituitary gland plays an important role in maintaining endocrine homeostasis as part of the hypothalamic-pituitary regulatory system (Assa and Ezzat, 2013). It is particularly vulnerable to the development of benign non-cancerous tumours (adenomas), which can lead to an over-or underproduction of pituitary hormones (Levy, 2004). Pituitary tumours are categorised based on their directional effects on hormone levels, with an additional category for the effects of tumour mass in the brain (primarily headaches and visual problems). In addition to tumours, genetic mutations can also result in isolated hormone deficiencies, such as in congenital hypothyroidism (Assa and Ezzat, 2013). Occasionally, traumatic brain injuries or treatments for other medical conditions can also lead to pituitary problems (Bondanelli et al, 2004). A wide range of pituitary disorders affect adults; some are present from birth, while others develop over time (Iorgi et al, 2012).
Classed as rare conditions, it is estimated that there are some 50 000–70 000 pituitary patients in the UK (Pituitary Foundation, 2016). Prolactinoma and clinically non-functioning pituitary adenomas are the two most prevalent pituitary adenomas, the latter reportedly found in up to 10% of MRI scans undertaken in the general population (Zada and Carmichael, 2019). There is a noted lack of epidemiological information on pituitary tumours; the latest review in the UK reported a rate of 77.6 per 100 000 head of population, while also noting the significant variation among the various pituitary disorders recorded in their sample (from 57% for prolactinomas to 2% for Cushing's disease) (Fernandez et al, 2010). Table 1 shows pituitary disorders along with their common symptoms and treatments. The management of pituitary conditions is challenging, as patients with these conditions require life-long monitoring and complex drug treatment regimens (Levy, 2004).
Table 1. Pathophysiology of pituitary conditions
| Pituitary disorder | Symptoms | Treatment |
|---|---|---|
| Secretory tumours | ||
| Prolactinoma | Headaches; visual problems; osteoporosis or bone lossIn women: changes in menstruation; production of breast milk; vaginal drynessIn men: erectile dysfunction; enlarged breasts; decreased face and body hair | Dopamine agonists to shrink tumour and reduce prolactin |
| Acromegaly | Enlarged limbs and facial features; impaired vision; fatigue; oily, coarse or thickened skin; husky voice; severe snoring | Somatostatin analogues to maintain GH levels; dopamine agonists to reduce GH and IGF-1 levels; GH antagonist to block the effect of GH on body tissues; surgery to remove tumour; radiotherapy |
| Cushing's disease | Weight gain with round, red face and extra fat round neck; purple stretch marks; high blood pressure; memory and concentration problems; fatigue; osteoporosis; weak muscles; irritability; depression and mood swings; poor immune function; high blood sugarIn women: irregular menstruation | Surgery to remove tumour; radiotherapy Medication may be needed to reduce the effect of cortisol on the body |
| Non-secretory pituitary disorders | ||
| Non-functioning adenoma | Tumour mass effects: headaches; visual problemsPossible hypopituitarism effects: weight change; fatigue; reduced libido; frequent night-time urination; joint pain; dizziness; low blood pressureIn women: irregular menstruationIn men: erectile dysfunction | None for micro-adenoma (<1 cm); life-long monitoring for macro-adenoma (>1 cm). Surgery to remove tumourHormone replacement may be necessary to correct any hormone imbalances |
| Craniopharyngioma and Rathke's cleft cysts | Tumour mass effects: headaches; visual problems;Interference with pituitary effects: constipation; nausea; reduced libido; frequent urination; excessive thirst; obesity; body temperature regulation problems; fatigue and drowsiness; dry skin; low blood pressure; personality changesIn women: irregular menstruation; production of breast milkIn children: lack of growth; delayed puberty | Surgery to remove tumour; radiotherapy |
| Hypopituitarism | GH deficiency: fatigue; muscle weakness; changes in body fat composition; lack of ambition; social isolationLH and FSH deficiency: reduced libido; infertility; fatigueIn women: decreased egg and oestrogen production from the ovaries; hot flashes; irregular menstruationIn men: decreases sperm and testosterone production from testicles; erectile dysfunction; decreased face and body hair; mood changesIn children: delayed pubertyTSH deficiency: fatigue; weight gain; dry skin; constipation; feeling coldACTH deficiency: severe fatigue; low blood pressure, which may lead to fainting; frequent and prolonged infections; nausea, vomiting or abdominal pain; confusionADH deficiency: can cause diabetes insipidus with symptoms of excessive urination; extreme thirst; electrolyte imbalances prolactin deficiencyIn women: problems with breast milk production | Hormone replacement, such as: GH deficiency: growth hormoneLH and FSH deficiency: testosterone for men; oestrogen and progesterone for women; gonadotrophins for infertilityTSH deficiency: levothyroxinACTH deficiency: corticosteroids to replace adrenal hormonesADH deficiency: desmopressin acetate |
| Diabetes insipidus | Excessive urination; extreme thirst; electrolyte imbalances; problems sleeping; fever; vomiting; diarrhoea; weight loss | Desmopressin |
Note: GH=growth hormone; LH=lutenising hormone, FSH=follicle-stimulating hormone; TSH=thyroid stimulating hormone; ACTH=adrenocorticotropic hormone ADH=anti-diuretic hormone
While health professionals make clear distinctions between pituitary conditions, tumours, adenomas or pituitary status or functioning, anecdotally, patients tend to talk about all these interchangeably as ‘pituitary conditions’. Pituitary conditions can seriously affect day-to-day functioning, and patients can experience significant distress, which negatively affects psychosocial functioning and quality of life (QoL) in ways that are often not sufficiently acknowledged or addressed by health professionals (Heald et al, 2004; Osbourne et al, 2006). Both the hormonal impact of pituitary conditions themselves, as well as the side effects of drug treatments, can cause a range of both physical and psychological symptoms, such as changes in weight, mood swings and fatigue, that can limit people's ability to function day to day (Andela et al, 2018). These factors are known to negatively influence QoL by limiting people's ability to work, socialise and generally engage in daily life (Osbourne et al, 2006). The consequence of this impaired QoL can be impaired psychological wellbeing, including manifestations of anxiety and depression (Andela et al, 2018). This is further exacerbated by the hormonal mood changes that pituitary conditions themselves can cause.
Sources of psychosocial support for patients with pituitary conditions is limited (Jackson et al, 2008), with the most comprehensive support being offered in the UK by the Pituitary Foundation (Underwood et al, 2019). This charitable organisation provides several services, including support groups, telephone helplines and information leaflets for individuals with pituitary conditions.
For psychosocial support to be effective, it helps to know which patients would benefit the most or have the greatest need. There are multiple studies that have assessed the QoL of patients with pituitary conditions using validated measures (Crespo et al, 2015; Lobatto et al, 2018). While this is the gold standard for research, it makes assumptions about what is meant by QoL, a term which may be defined differently by patients, clinicians or researchers—something that is difficult to determine without talking to all groups. Without fully understanding how conditions affect patients' day-to-day lives and how this affects QoL, it is difficult to develop the appropriate support services to improve long-term psychological wellbeing.
The present study aimed to survey the psychosocial symptoms associated with pituitary conditions as identified by patients themselves in order to capture a patient perspective of how QoL may be impaired and the psychological impact of this. Second, it aimed to identify differences in symptomatology across patient groups to better understand the global versus condition-specific psychosocial issues in this patient group.
Method
Design and procedure
Respondents could complete either a pen-and-paper version or an online version on the survey platform Survey Monkey. The survey design was based on material from a previous treatment satisfaction survey undertaken for the Pituitary Foundation (Jackson et al, 2008). The starting point for the 2008 treatment satisfaction survey was the qualitative analysis of free-text answers provided by respondents to a previous needs analysis, also undertaken for the Pituitary Foundation (Morris et al, 2006). These data identified four key themes (knowledge about the Pituitary Foundation, patient support needs, experiences of diagnosis and the psychological impact of the pituitary conditions). Additionally, specific items from a range of validated questionnaires were added to address the psychosocial elements, but no validated measures were included in their entirety. The resulting items were then used to create a survey structured according to the Big Cancer Information Survey (Cancerbackup, 2016). For the latest survey, the 2008 survey had items added and amended by the staff at the Pituitary Foundation, based on the information they needed from their membership. As a result, participants were asked to provide feedback on various aspects of their pituitary care, including identifying the psychosocial symptoms they had experienced because of their condition. There was also a block of nine questions where participants could rate their satisfaction on a 4-point Likert scale on issues likely to directly affect QoL, such as their ability to get around, sleep quality, self-satisfaction and relationships with others.
The data were analysed using descriptive statistics as well as inferential statistics, such as correlational analyses, t-tests and MANOVA, which were used to identify differences in symptomatology across different pituitary conditions, age ranges and genders. Where appropriate, regression models were employed to identify the variance in symptoms.
Participants
Ethics approval was obtained from the ethics committee of the Faculty of Health, Medicine, Dentistry and Human Sciences, University of Plymouth (10365532). Participants were approached by the Pituitary Foundation, and informed consent was obtained from all study participants.
The survey was sent out to 2000 members of the UK Pituitary Foundation, between June and August 2016. Participants were sent a link to an online survey or given the option to receive a pen-and-paper version of the questionnaire if they preferred. While the survey was targeted primarily at patients diagnosed with pituitary conditions, the invitation allowed family members or relatives to complete the questionnaire on behalf of their loved one, where the latter did not feel capable of doing so (the questionnaire was long and could have caused considerable fatigue to some patients). These response data were treated as patient data on the grounds that the individuals had clearly stated that they were completing the questionnaire with the patient, and not from their own perspective. Additionally, individuals who considered themselves to have a pituitary condition, but who had not yet been formally diagnosed, were included on the invitation list, as many members sign up to the Pituitary Foundation, but do not yet have a diagnosis. Previous research has identified that the diagnosis of a pituitary condition can take many years (Underwood et al, 2019), so it was important to include the experiences of these individuals.
Results
Some 1062 individuals (53% response rate) responded to the survey (683 female, 366 male, 13 undeclared), with most residing in England (861; 93%). Of these responses, 567 were in pen-and-paper format and 495 were online. Participants ranged in age from younger than 18 years to older than 65 years; with categorical age ranges used in the survey, the modal age range was 36–55 years. Of the responses, 1004 were from patients with a pituitary condition either receiving treatment or in the post-acute treatment phase, 32 were relatives or friends answering on behalf of patients and eight had undiagnosed conditions. The remaining participants did not identify their status. The decision was taken to include these responses within the data set, given the small number of responses compared to patient data. Participants reported a range of pituitary conditions (often declaring more than one). The characteristics of the participants are provided in Table 2.
Table 2. Participant characteristics and number of respondents
| Characteristics | Number of respondents |
|---|---|
| Gender | |
| Female | 683 |
| Male | 366 |
| Unspecified | 14 |
| Respondent category | |
| Patient | 1004 |
| Family/relative of patient | 32 |
| As yet undiagnosed | 8 |
| Other | 1 |
| Age ranges | |
| Under 18 years | 7 |
| 18–25 years | 13 |
| 26–35 years | 74 |
| 36–55 years | 383 |
| 56–65 years | 248 |
| Over 65 years | 330 |
| Unspecified | 8 |
| Ethnicity | |
| White British | 948 |
| Black British | 8 |
| Other White | 67 |
| Other Black | 3 |
| Asian | 13 |
| Chinese | 3 |
| Other ethnic group | 9 |
| Unspecified | 13 |
| Geographic location * | |
| England | 861 |
| Scotland | 70 |
| Wales | 30 |
| Northern Ireland | 20 |
| Outside of the UK | 15 |
| Unspecified | 58 |
| Employment status | |
| Full-time employment | 282 |
| Part-time employment | 259 |
| Voluntary work | 157 |
| In education | 47 |
| Pituitary condition | |
| Hypopituitarism | 473 |
| Diabetes insipidus | 183 |
| Non-functioning tumour | 170 |
| Acromegaly | 138 |
| Prolactinoma | 123 |
| Cushing's disease | 98 |
| Craniopharyngioma | 64 |
| Hypogonadism | 367 |
| Sheehan's syndrome | 14 |
| Time since diagnosis | |
| Less than 3 months | 15 |
| 3–6 months | 22 |
| 6–12 months | 32 |
| 1–2 years | 51 |
| 2–5 years | 122 |
| 5–10 years | 193 |
| More than 10 years | 501 |
Note:
*total sample
Response rates for individual sections and questions varied from 82.4% to 100% depending on the nature of the questions. Questions about psychosocial symptoms had higher response rates (87–100%), while those related to interaction with health professionals and support had lower rates (82.4–89.5%). All missing data were removed during analysis. Due to the high overall response rates, the presence of missing data is unlikely to have biased the findings. It is worth noting that questions nearer the end of the survey had a higher drop-out rate, suggesting that issues of fatigue played a part on missing data. This was considered in the questionnaire design, with questions on symptomology being placed near the beginning of the questionnaire.
Psychosocial symptoms and QoL
A range of psychosocial symptoms were reported (Figure 1), with the most common being fatigue, fluctuating moods, changes to appearance and anxiety and depression.
Figure 1. Proportion of psychosocial symptoms among the respondents
While some respondents reported good QoL in some domains using Likert scale measures (Table 3), others reported high levels of dissatisfaction. In these domains, a higher level of dissatisfaction is likely to lead to poorer QoL. The most frequently reported QoL issue was poor sleep quality (502; 47.2%), a notable problem in a patient group reporting high levels of fatigue. This was closely followed by general dissatisfaction with oneself and one's life (482; 42.9%), poor sex life (456; 42.9%), lack of ability to get around (241; 22.7%) and problems within personal relationships (250; 23.5%).
Table 3. Quality of life difficulties reported by respondents
| Ability to get around (n=926) | Quality of sleep (n=933) | Yourself generally (n=919) | Sex life (n=907) | Personal relationships (n=917) | |
|---|---|---|---|---|---|
| Most dissatisfied | 81 (7.6%) | 170 (16%) | 123 (11.6%) | 230 (21.6%) | 68 (6.4%) |
| Not satisfied | 160 (15.1%) | 332 (31.2%) | 359 (33.8%) | 226 (21.3%) | 182 (17.1%) |
| Satisfied | 343 (32.3%) | 312 (29.4%) | 339 (31.9%) | 208 (19.6%) | 432 (40.6%) |
| Very satisfied | 331 (31.1%) | 118 (11.1%) | 96 (9%) | 46 (4.3%) | 193 (18.2%) |
Two other common QoL issues were reduced social contact (463 participants, 43.6%) and employment-related problems. For example, 434 respondents (40.9%) stated that they had either had to reduce or stop their employment since the onset of their condition, with 305 respondents (28.7%) stating that they had been forced to stop work entirely. A further 425 participants (40%) reported having to stop or reduce education because of their condition. A more detailed analysis of the responses showed that 423 respondents (39.8%) were in paid employment of some nature, while 157 (14.8%) were working in voluntary roles. Respondents generally reported a positive picture in relation to support available from employers and the attitudes in their workplace (Table 4), but many identified difficulties within the workplace alongside blighted career prospects (411; 38.7%). Some 408 respondents (38.4%) felt unsupported by their organisation, 405 (38.1%) felt unsupported by their manager and 458 (42.2%) felt unsupported by their colleagues. A further 110 respondents (10.4%) felt they had experienced discrimination due to their condition.
Table 4. Experiences of respondents in the workplace
| Supported by the organisation (n=940) | Supported by my manager (n=936) | Supported by my colleagues (n=932) | Provision of information to manage condition (n=932) | Discrimination due to condition (n=1062) | Condition reduced career prospects (n=951) | |
|---|---|---|---|---|---|---|
| Strongly disagree | 69 (6.5%) | 71 (6.7%) | 37 (3.5%) | 148 (13.9%) | 236 (22.2%) | 123 (11.6%) |
| Disagree | 115 (10.8%) | 92 (8.7%) | 94 (8.8%) | 177 (16.7%) | 183 (17.2%) | 112 (10.5%) |
| Agree | 267 (25.1%) | 239 (22.5%) | 293 (27.6%) | 91 (8.6%) | 72 (6.8%) | 177 (16.7%) |
| Strongly agree | 141 (13.3%) | 166 (15.6%) | 155 (14.6%) | 33 (3.1%) | 38 (3.6%) | 234 (22%) |
The study also aimed to capture the support that pituitary patients were receiving in relation to QoL issues. The data showed that, despite high levels of reduced social contact, many respondents felt that the emotional support they received from family, friends and relatives was satisfactory (Figure 2). In relation to aspects of care, the two biggest issues were a lack of specialist endocrine services within easy travelling distance and poor diagnostic experiences. For example, 166 respondents (15.6%) had to travel outside of their postcode area to attend a support group, and a further 155 (14.6%) had to travel out of region to attend an endocrine centre. As an example of diagnostic problems, 218 respondents (20.5%) reported needing over 10 visits to their GP before receiving a diagnosis.
Figure 2. Emotional support from personal and professional sources (n=1062)
Inferential analyses
A further aim of this study was to understand what support was available for patients who were experiencing QoL issues because of their pituitary conditions and to identify any differences in QoL across different pituitary conditions, age or gender.
Analysis of location data identified that there was a relationship between the distance from support groups and self-management, with respondents further from support groups reporting greater difficulties with self-management of their conditions (r2=-0.109, n=996, p=0.001). Being closer to support groups was associated with less fear after receiving a diagnosis of a pituitary condition (r2=0.081, n=996, p=0.01). This suggests that more local access to support services is needed to improve QoL for patients.
To determine whether there were relationships between symptoms and specific characteristics, a series of stepwise regression analyses were conducted on age group, gender and each specific condition, including all psychosocial symptoms reported. Some of the psychological and physical symptoms measured were generally universal, in that they seemed to affect all groups of patients regardless of the specific condition. These symptoms included fatigue, fluctuating mood, changes in appearance, anxiety and depression. Certain condition-specific symptoms were reported at higher levels, for example, fatigue in patients with hypopituitarism (ß=0.274, p<0.01), and increased changes in appearance in both Cushing's disease (ß=0.103, p<0.01) and acromegaly (ß =0.268, p<0.01). These findings suggest that these symptoms are likely to lead to poorer QoL in these patient groups.
A series of regression models identified key symptoms associated with each pituitary condition. For each model, the amount of variance explained (shown as percentages) represents symptoms and difficulties that were more likely to be reported in the specific patient group.
For non-functioning tumours, the only symptom category that explained significant variance was ‘feeling generally unwell’ (r2(1,1041)=4.337, p=0.038). In craniopharyngioma, variance was best accounted for by appetite change (9.2%), infertility (8.9%) and weight gain (6.8%) (r2(3,1053)=11.265, p<0.001). Variance in hypopituitarism was explained by fatigue (20.6%), poor illness recovery (9.1%) and infertility (18.4%) (r2(3,1058)=48.911, p<0.001). Changes in appearance (18.7%) and thin skin (22.4%) explained the variance in symptoms among respondents with Cushing's disease (r2(2,1059)=61.907, p<0.001).
Prolactinoma was associated with headaches (15.1%), inability to get around (14.1%) and infertility (9.7%) (r2(3,921)=14.476, p<0.001). Diabetes insipidus symptoms were accounted for by changes in appetite (r2(1,679)=6.289, p=0.012), while Sheehan's syndrome was associated with pain (r2(1,679)=8.534, p=0.004). For those with acromegaly, pain (7.7%) and changes in appearance predominated (23.7%) (r2(2,870)=35.337, p<0.001). Finally, the variance in hypogonadism was mostly explained by impotence (19.2%), reduced social contact (13%) and low libido (9%) (r2(3,730)=20.716, p<0.001).
An initial correlational analysis highlighted that those who had completed treatment for their pituitary condition had more symptoms of fatigue than those in the early stages of treatment (r2=-0.095, n=928, p<0.005). No differences were found between those who had been diagnosed sooner rather than later. This demonstrates a potential long-term reduction in QoL associated with fatigue after treatment has ended, highlighting that fatigue is not simply a symptom of the treatment process.
Some differences were reported between men and women. This is important for ensuring that appropriate support is provided to different patient groups. The regression model for gender identified that dizzy spells, headaches, weight gain and poor sex life accounted for the largest amount of variance (r2(10,720)=26.086, p<0.001). A series of t-tests exploring gender differences highlighted that women were more likely to report dizzy spells (t(899)=5.234, p<0.001), headaches (t(821)=4.314, p<0.001) and weight gain (t(768)=6.498, p<0.001), whereas men were more likely to report poor sex life (t(704)=3.433, p=0.001).
Differences were also found according to age. A further regression model identified differences in symptomatology according to age, with infertility, impotence, dizzy spells, general dissatisfaction with self, poor sex life, changes in appearance and pain explaining the largest variance (r2(9,811)=25.709, p<0.001). Younger respondents experienced more distress associated with changes in appearance (F(5,815)=15.039, p<0.001), infertility (F(5,815)=15.011, p<0.001), pain (F(5,815)=9.777, P<0.001), dizzy spells (F(5,815)=6.509, p<0.001) and poor quality of sex life (F(5,815)=2.858, p=.014). Older respondents reported impotence (F(5,815)=2.285, p=.045) and feeling dissatisfied with themselves generally as potential causes of poor QoL (F(5,815)=9.627, p<0.001).
Discussion
Previous studies highlighted the QoL issues associated with pituitary conditions both in terms of generic symptoms (Baird et al, 2003), and those that are more condition specific (Ascoli and Cavagnini, 2006). The results from this study showed that patients experienced high levels of physical and psychosocial symptoms that are known to affect QoL. These include physical symptoms, such as fatigue and pain, that can limit a person's ability to engage in daily life; psychological symptoms such as anxiety and depression, which can lead to reduced contact with others and can cause distress; and finally social symptoms, such as being unable to socialise or attend work. Altogether, these factors have an overall impact on QoL. The greater the number of such symptoms, the more likely it is that QoL will be impaired.
Some symptoms were found to be general, such as fatigue, fluctuations in mood, appearance concerns, depression and anxiety. Additionally, there were some specific pituitary conditions with higher reported rates of other symptoms. These included ‘feeling generally unwell’ in non-functioning tumours, appetite change and weight gain in craniopharyngioma, infertility and poor illness recovery in hypopituitarism and changes in appearance and thin skin in Cushing's disease. Prolactinoma was associated with increased headaches and poor ability to get around. Patients with Sheehan's syndrome and acromegaly reported higher rates of pain, and those with diabetes insipidus complained of changes in appetite. These findings highlight that specific conditions bring with them susceptibilities to specific symptoms, as well as carrying the risk of more generic QoL issues. As well as condition-specific symptoms, this study identified differences in symptoms reported by gender and age.
Fatigue, in particular, has long been known to be a problem among those with pituitary conditions (Heald et al, 2004). Therefore, it is perhaps unsurprising that 73% of the survey respondents reported fatigue. This, along with the multitude of QoL issues reported, indicates just how difficult life is for those with a pituitary condition. This is further borne out by the data on employment, where 29% of the respondents surveyed had to give up work because of their condition, adding a potentially not insignificant socioeconomic impact to QoL.
The impact of symptoms such as fatigue, appearance change, mood disturbance, anxiety and depression should not be underestimated. These generic symptoms can have an overwhelming influence on QoL and are likely to be intrinsically linked. For example, fatigue can be described as a feeling of exhaustion that has physical, mental and emotional components (McCabe, 2009). This mental and emotional exhaustion is closely linked to the development of anxiety and depression (Brown and Kroenke, 2009). Further, changes in hormone levels can affect mood (Spencer et al, 2015) and may be exacerbated by dissatisfaction with appearance (Bessell et al, 2012) because of physiological changes, further increasing anxiety and depression. Understanding how patients experience such psychosocial symptoms and reduced QoL is of clinical importance to improve care and support.
Although there is a breadth of literature on QoL using standardised questionnaires (Andela et al, 2018; Lobatto et al, 2018), there has been less focus on understanding how patients themselves experience physical and psychosocial symptoms and what they consider to be poor QoL. Previous studies using such standardised measures have identified similar issues to those in this study, such as the generic symptoms of mood disturbance, fatigue and appearance changes (including weight gain) (De Bucy et al, 2017; Andela et al, 2018; Lobatto et al, 2018). By using patient-guided symptoms of QoL, this study has highlighted some of the consequences of those symptoms, such as reduced social contact, general feelings of ill-health and poor sex life. For example, issues such as impotence and infertility can be problematic for patients and affect their relationships with others, as well as having a physical manifestation (Andela et al, 2017).
In this study, over 35% of respondents expressed dissatisfaction with the support they received from health professionals. This suggests that knowledge surrounding QoL issues tends not to translate into meaningful support. As well as having an impact on QoL, access to support services may be important for reducing the fear of diagnosis and for helping to improve self-management (Dwarswaard et al, 2016). Whether this support is provided by health professionals or through support groups, pituitary patients in the UK could benefit from increased sources of support.
In addition to highlighting a degree of dissatisfaction with the emotional support received, the data also captured the worryingly long time it takes many UK patients to receive a diagnosis. In the present study, a fifth of the participants had to visit their GP at least 10 times before they received a diagnosis. This suggests a general lack of knowledge within community medicine about pituitary conditions. This lack of knowledge may be widespread and may help explain why patients report feeling that they receive inadequate emotional support surrounding the psychosocial aspects of their condition (Jackson et al, 2008).
Limitations
Respondents were recruited through the Pituitary Foundation in the UK; therefore, the sample may not be representative of those with pituitary conditions more generally. It could be argued that members of the Pituitary Foundation are more likely to receive regular support through the organisation. This raises the question of whether those outside of the Pituitary Foundation may be experiencing more QoL issues. Conversely, it is possible that those who are experiencing more psychosocial symptoms are more likely to approach organisations like the Pituitary Foundation and may, therefore, present with greater QoL issues. Future studies need to focus on recruiting a wider sample beyond users of third-sector support organisations. Additionally, the sample was a self-selecting group with pituitary conditions and, as such, their status as patients could not be objectively verified through medical records. With these factors in mind, further investigation is needed to ensure that the results of this study can be generalised to a wider patient population. However, as symptoms identified by respondents are similar to previous studies with pituitary patients, the authors are confident that this represents QoL factors that can be generalised across patient groups within the UK.
Other limitations relate to the collection of location data; the study asked only brief questions about the location of services across the UK. A more detailed investigation could provide richer information about the gaps and variations in service provision across the UK (Underwood et al, 2019), as well as establishing clearer links between support services and QoL.
Finally, as mentioned previously, this study did not use a validated measure of QoL. Instead, it used a patient-guided survey to understand how patients experience poor QoL by measuring a range of physical, psychological and social symptoms of pituitary conditions that are known to be associated with poor QoL. The justification for this was to gain a more global understanding of QoL, rather than a ‘snapshot’ of distress. This, however, has implications for validity and reliability of the survey for research purposes.
Implications
The findings suggest a need for more information and increased support for pituitary patients. While support groups are important in helping to manage the distress of patients with long-term conditions and can improve condition management (Dwarswaard et al, 2016), it is crucial that individuals receive adequate support and information through health providers at the point of diagnosis. Providing basic information and support at this stage may help to reduce the psychosocial impact of pituitary conditions on individuals and, in turn, improve long-term QoL (Aalto et al, 1997). Future clinical practice needs to ensure that routine information and support services are available to support the unmet needs of this patient group, and future research should focus on evaluating improvements in QoL resulting from such interventions.
Conclusions
The present study identified both generic QoL issues associated with pituitary conditions, as well as more condition-specific symptoms. The findings emphasise the need for greater psychosocial support for those living with pituitary conditions in the UK to improve their QoL.
KEY POINTS
- Patients with pituitary conditions experience a range of psychosocial symptoms associated with their conditions that negatively impact quality of life
- These psychosocial symptoms are often overlooked by health professionals
- Patients reported a range of physical and psychosocial issues including mood swings, appearance issues, fatigue, anxiety and depression
- Symptoms varied depending on age, gender, and condition type
- More advice and information are needed for patients from health professionals to improve condition management.
CPD REFLECTIVE QUESTIONS
- How might health professionals support people with pituitary conditions to management their condition more effectively?
- What role could community nurses play in providing information and support to patients with pituitary conditions?
- How can community nurses link with charitable sector organisations to improve information and advice to patients?