References

Andela CD, Lobatto DJ, Pereira AM, van Furth WR, Biermasz NR. How non-functioning pituitary adenomas can affect health-related quality of life: a conceptual model and literature review. Pituitary. 2018; 21:(2)208-216 https://doi.org/10.1007/s11102-017-0860-4

Andela CD, Repping-Wuts H, Stikkelbroeck NMML Enhanced self-efficacy after a self-management programme in pituitary disease: a randomized controlled trial. Eur J Endocrinol. 2017; 177:(1)59-72 https://doi.org/10.1530/EJE-16-1015

Andela CD, Scharloo M, Ramondt S The development and validation of the Leiden Bother and Needs Questionnaire for patients with pituitary disease: the LBNQ-Pituitary. Pituitary. 2016; 19:(3)293-302 https://doi.org/10.1007/s11102-016-0707-4

Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007; 42:(4)1758-1772 https://doi.org/10.1111/j.1475-6773.2006.00684.x

Brown LF, Kroenke K. Cancer-related fatigue and its associations with depression and anxiety: a systematic review. Psychosomatics. 2009; 50:(5)440-447 https://doi.org/10.1016/S0033-3182(09)70835-7

Carriker CR. Components of fatigue: mind and body. J Strength Cond Res. 2017; 31:(11)3170-3176 https://doi.org/10.1519/JSC.0000000000002088

Connell J, Brazier J, O'Cathain A, Lloyd-Jones M, Paisley S. Quality of life of people with mental health problems: a synthesis of qualitative research. Health Qual Life Outcomes. 2012; 10:(1) https://doi.org/10.1186/1477-7525-10-138

Crespo I, Valassi E, Santos A, Webb SM. Health-related quality of life in pituitary diseases. Endocrinol Metab Clin North Am. 2015; 44:(1)161-170 https://doi.org/10.1016/j.ecl.2014.10.013

Fernandez A, Karavitaki N, Wass JAH. Prevalence of pituitary adenomas: a community-based, cross-sectional study in Banbury (Oxfordshire, UK). Horumon To Rinsho. 2010; 72:(3)377-382 https://doi.org/10.1111/j.1365-2265.2009.03667.x

Findley PA. Social work practice in the chronic care model: chronic illness and disability care. Journal of Social Work. 2014; 14:(1)83-95 https://doi.org/10.1177/1468017313475381

Forrest H, Norman A, Jackson S. The Pituitary Foundation Patient Satisfaction Survey reports 2008 and 2017: a comparison. Pituitary Life. 2018; 38:9-11

Gregory D., Johnston R, Pratt G, Watts M, Whatmore S. Quality of life, 5th edn. Oxford: Wiley-Blackwell; 2009

Heald AH, Ghosh S, Bray S Long-term negative impact on quality of life in patients with successfully treated Cushing's disease. Horumon To Rinsho. 2004; 61:(4)458-465 https://doi.org/10.1111/j.1365-2265.2004.02118.x

Heyworth ITM, Hazell ML, Linehan MF, Frank TL. How do common chronic conditions affect health-related quality of life?. Br J Gen Pract. 2009; 59:(568)e353-e358 https://doi.org/10.3399/bjgp09X453990

Hirotsu C, Tufik S, Andersen ML. Interactions between sleep, stress, and metabolism: from physiological to pathological conditions. Sleep Sci. 2015; 8:(3)143-152 https://doi.org/10.1016/j.slsci.2015.09.002

Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005; 15:(9)1277-1288 https://doi.org/10.1177/1049732305276687

Hughes K, Corcoran T, Slee R. Health-inclusive higher education: listening to students with disabilities or chronic illnesses. Higher Education Research & Development. 2016; 35:(3)488-501 https://doi.org/10.1080/07294360.2015.1107885

Jackson S, Morris M, Ashley K. Joining the dots: devising a supported self-help strategy to help pituitary patients integrate their medical care. International Journal of Integrated Care. 2008; 8:(5) https://doi.org/10.5334/ijic.267

Levy A. Pituitary disease: presentation, diagnosis, and management. J Neurol Neurosurg Psychiatry. 2004; 75:iii47-iii52 https://doi.org/10.1136/jnnp.2004.045740

Llahana S, Follin C, Yedinak C, Grossman A. Advanced practice in endocrinology nursing.Cham, Switzerland: Springer Nature; 2019

Lobatto DJ, Steffens ANV, Zamanipoor Najafabadi AH Work disability and its determinants in patients with pituitary tumor-related disease. Pituitary. 2018; 21:(6)593-604 https://doi.org/10.1007/s11102-018-0913-3

McCabe M. Fatigue in children with long-term conditions: an evolutionary concept analysis. J Adv Nurs. 2009; 65:(8)1735-1745 https://doi.org/10.1111/j.1365-2648.2009.05046.x

McGuirk PM, O'Neill P. Using questionnaires in qualitative human geography. In: Hay I (ed). Don Mills, Canada: Oxford University Press; 2016

Moore S, Wotus R, Norman A, Holloway M, Dean J. Behind the cloak of competence: brain injury and mental capacity legislation. Journal of Adult Protection. 2019; 21:(4)201-218 https://doi.org/10.1108/JAP-02-2019-0007

Long-term conditions and mental health. The cost of co-morbidities. 2012. https://tinyurl.com/2xwm2wju (accessed 25 May 2022)

National Institute for Health and Care Excellence. Improving outcomes for people with brain and other central nervous system tumours. Cancer service guideline CSG10. 2006. https://www.nice.org.uk/guidance/csg10 (accessed 25 May 2022)

Norman A, Jackson S, Ferrario H, Percuklievska N, McBride P. Towards a greater understanding of the psychosocial impact of the symptoms of pituitary conditions. Br J Community Nurs. 2021; 26:(5)236-243 https://doi.org/10.12968/bjcn.2021.26.5.236

Norman A, Persson M, Stock N The effectiveness of psychosocial intervention for individuals with cleft lip and/or palate and their parents: a systematic review. Cleft Palate Craniofac J. 2015; 52:(3)301-310 https://doi.org/10.1597/13-276

O'Cathain A, Thomas KJ. ‘Any other comments?’ Open questions on questionnaires—a bane or a bonus to research?. BMC Med Res Methodol. 2004; 4 https://doi.org/10.1186/1471-2288-4-25

Odumuyiwa T, Kennedy M, Norman A Improving access to social care services following acquired brain injury: a needs analysis. Journal of Long-Term Care. 2019; 164-179 https://doi.org/10.31389/jltc.6

Osbourne M, Jackson S, Morris M, Ashley K. Cinderella's story: the psychosocial impact of pituitary conditions. Endocrine Abstracts. 2006; 12

Pituitary Foundation. Pituitary conditions. 2014. https://www.pituitary.org.uk/information/pituitary-conditions (accessed 25 May 2022)

Price A, Hotopf M, Higginson IJ, Monroe B, Henderson M. Psychological services in hospices in the UK and Republic of Ireland. J R Soc Med. 2006; 99:(12)637-639 https://doi.org/10.1177/014107680609901213

Prince MJ. Workplace accommodation of persons with invisible disabilities: a literature review. Journal of Vocational Rehabilitation. 2017; 46:(1)77-86 https://doi.org/10.3233/JVR-160844

Rio LM. The hormone factor in mental health: bridging the mind-body gap.London: Jessica Kingsley Publishers; 2013

Sparkes AC, Smith B. Qualitative research methods in sport, exercise and health: from process to product.Abingdon: Routledge; 2014

Spencer SJ, Emmerzaal TL, Kozicz T, Andrews ZB. Ghrelin's role in the hypothalamic-pituitary-adrenal axis stress response: implications for mood disorders. Biol Psychiatry. 2015; 78:(1)19-27 https://doi.org/10.1016/j.biopsych.2014.10.021

Vaismoradi M, Jones J, Turunen H, Snelgrove S. Theme development in qualitative content analysis and thematic analysis. Journal of Nursing Education and Practice. 2016; 6:(5)100-110 https://doi.org/10.5430/jnep.v6n5p100

Wass J, Owen K. Oxford handbook of endocrinology & diabetes, 3rd edn. Oxford: Oxford University Press; 2014

Webb SM, Prieto L, Badia X Acromegaly quality of life questionnaire (ACROQOL) a new health-related quality of life questionnaire for patients with acromegaly: development and psychometric properties. Horumon To Rinsho. 2002; 57:(2)251-258 https://doi.org/10.1046/j.1365-2265.2002.01597.x

Hidden disability: a study of the psychosocial impact of living with pituitary conditions

09 June 2022
19 min read
Volume 31 · Issue 11

Abstract

Background:

Pituitary patients often experience psychosocial symptoms associated with their condition.

Aims:

To explore the condition management experiences of pituitary patients and their psychosocial symptoms and to explore the impact of these on quality of life.

Methods:

A sample of 748 individuals aged 18 to more than 65 years) completed a questionnaire relating to quality of life and the psychosocial impact of pituitary conditions.

Findings:

Analysis of the qualitative sections using content analysis identified four themes: social isolation, emotional and behavioural issues, appearance distress and physical and cognitive effects including fatigue and pain. An overarching theme of hidden disability emerged.

Conclusion:

The study identified multiple biopsychosocial factors that impact quality of life, with symptoms not visible to others most likely to impact negatively. Nurses are well placed to provide support and information to patients about the possible psychosocial impact of pituitary conditions to enable positive adjustment.

Pituitary gland disorders comprise a range of rare health conditions that affect an estimated 50 000-70 000 patients (approximately 1% of the population) in the UK (Pituitary Foundation, 2014). Pituitary conditions affect hormonal control within the body. These include acromegaly (overproduction of growth hormone), adult growth hormone deficiency (under production of growth hormone), Cushing's disease (overproduction of adrenocorticotropic hormone), diabetes insipidus (underproduction of vasopressin) and hypopituitarism (general underproduction of pituitary hormones).

The medical management of pituitary conditions is notoriously difficult, and individuals frequently experience high levels of distress often not addressed by health professionals despite National Institute for Health and Care Excellence (NICE) guidance stating that distress must be assessed at key points within the patient-care pathway for central nervous system (CNS) tumours (which includes pituitary adenomas) (Levy, 2004; Osbourne et al, 2006; NICE, 2006). The diagnostic process can require multiple tests and scans, ideally undertaken in specialist endocrine centres (Wass and Owen, 2014). For prolactinoma, the commonest of the pituitary conditions (Fernandez et al, 2010), medication is used to shrink the tumour and reduce prolactin levels, while patients with other pituitary conditions are likely to require surgery and radiotherapy in addition to medication (Wass and Owen, 2014). Post-surgery, medication may be required to replace or optimise hormone levels, although getting this right can be frustrating for all concerned, with some patients still feeling unwell despite post-treatment blood results showing hormone levels within the normal range (Rio, 2013). Post-treatment, patients require an annual review in a specialist endocrine centre.

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