Patients treated for pituitary adenomas generally report a reduced quality of life (QoL). At present, the patient’s perspective of QoL has not been fully addressed and this, and further insight in potential determinants of QoL in pituitary diseases is required to design strategies to improve QoL. We aimed to define patients’ perceived QoL and to identify potential factors they perceive to contribute to QoL.
We conducted four independent focus groups of six patients each, per specific pituitary disease (Cushing’s disease, Non-functioning pituitary macroadenoma, acromegaly, prolactinoma). In two sessions these focus groups discussed aspects of QoL. Verbatim transcripts were analyzed using a grounded theory approach.
The issues raised by the patient groups were compatible with statements and items of available QoL questionnaires. In addition, other QoL aspects emerged, such as visual limitations (physical problems); issues with a desire to have children/family planning, fear of collapsing, fear of recurrence, panic, persisting thoughts, problems with an altered personality, anger, jealousy, sadness, frustration (psychological problems); and difficulties communicating about the disease, lack of sympathy and understanding by others, and a reduced social network (social problems). Next, this study uncovered factors which might contribute to a decreased QoL (e.g. less effective coping strategies, negative illness perceptions, negative beliefs about medicines, unmet needs regarding care).
This focus group study demonstrated that important disease-specific aspects of QoL are neglected in current pituitary disease-specific questionnaires and elucidated potential factors that contribute to a decreased QoL. Information provided in this study can (and will) be used for developing additional items for disease-specific QoL questionnaires and for the development of a self-management intervention aiming to improve QoL in patients treated for pituitary diseases.
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Gardner D, Shoback D (2011) Basic and clinical endocrinology, 9th edn. McGrawHill, Singapore, pp 99–113
van Aken MO, Pereira AM, Biermasz NR, van Thiel SW, Hoftijzer HC, Smit JW, Roelfsema F, Lamberts SW, Romijn JA (2005) Quality of life in patients after long-term biochemical cure of Cushing’s disease. J Clin Endocrinol Metab 90:3279–3286
Wagenmakers MA, Netea-Maier RT, Prins JB, Dekkers T, den Heijer M, Hermus AR (2012) Impaired quality of life in patients in long-term remission of Cushing’s syndrome of both adrenal and pituitary origin: a remaining effect of long-standing hypercortisolism? Eur J Endocrinol 167:687–695
van der Klaauw AA, Kars M, Biermasz NR, Roelfsema F, Dekkers OM, Corssmit EP, van Aken MO, Havekes B, Pereira AM, Pijl H, Smit JW, Romijn JA (2008) Disease-specific impairments in quality of life during long-term follow-up of patients with different pituitary adenomas. Clin Endocrinol (Oxf) 69:775–784
Dekkers OM, van der Klaauw AA, Pereira AM, Biermasz NR, Honkoop PJ, Roelfsema F, Smit JW, Romijn JA (2006) Quality of life is decreased after treatment for nonfunctioning pituitary macroadenoma. J Clin Endocrinol Metab 91:3364–3369
Biermasz NR, van Thiel SW, Pereira AM, Hoftijzer HC, van Hemert AM, Smit JW, Romijn JA, Roelfsema F (2004) Decreased quality of life in patients with acromegaly despite long-term cure of growth hormone excess. J Clin Endocrinol Metab 89:5369–5376
Kars M, van der Klaauw AA, Onstein CS, Pereira AM, Romijn JA (2007) Quality of life is decreased in female patients treated for microprolactinoma. Eur J Endocrinol 157:133–139
Capatina C, Christodoulides C, Fernandez A, Cudlip S, Grossman AB, Wass JA, Karavitaki N (2013) Current treatment protocols can offer a normal or near-normal quality of life in the majority of patients with non-functioning pituitary adenomas. Clin Endocrinol (Oxf) 78:86–93
Tanemura E, Nagatani T, Aimi Y, Kishida Y, Takeuchi K, Wakabayashi T (2012) Quality of life in nonfunctioning pituitary macroadenoma patients before and after surgical treatment. Acta Neurochir (Wien) 154:1895–1902
Tiemensma J, Kaptein AA, Pereira AM, Smit JW, Romijn JA, Biermasz NR (2011) Affected illness perceptions and the association with impaired quality of life in patients with long-term remission of acromegaly. J Clin Endocrinol Metab 96:3550–3558
Cesar de Oliveira NE, Dutra Violante AH, Caldas D, Lamounier FA, Rezende LC, Fontes R, Schrank Y, Gomes de SR, Vaisman M, Guerra E, Sebastian A, Colao A (2008) Quality of life in women with microprolactinoma treated with dopamine agonists. Pituitary 11:247–254
Johnson MD, Woodburn CJ, Vance ML (2003) Quality of life in patients with a pituitary adenoma. Pituitary 6:81–87
Webb SM, Prieto L, Badia X, Albareda M, Catala M, Gaztambide S, Lucas T, Paramo C, Pico A, Lucas A, Halperin I, Obiols G, Astorga R (2002) Acromegaly Quality of Life Questionnaire (ACROQOL) a new health-related quality of life questionnaire for patients with acromegaly: development and psychometric properties. Clin Endocrinol (Oxf) 57:251–258
Webb SM, Badia X, Surinach NL (2006) Validity and clinical applicability of the acromegaly quality of life questionnaire, AcroQoL: a 6-month prospective study. Eur J Endocrinol 155:269–277
Pantanetti P, Sonino N, Arnaldi G, Boscaro M (2003) The quality of life in acromegaly. J Endocrinol Invest 26:35–38
Webb SM, Badia X, Barahona MJ, Colao A, Strasburger CJ, Tabarin A, van Aken MO, Pivonello R, Stalla G, Lamberts SW, Glusman JE (2008) Evaluation of health-related quality of life in patients with Cushing’s syndrome with a new questionnaire. Eur J Endocrinol 158:623–630
Milian M, Teufel P, Honegger J, Gallwitz B, Schnauder G, Psaras T (2012) The development of the Tuebingen Cushing’s disease quality of life inventory (Tuebingen CD-25). Part II: normative data from 1784 healthy people. Clin Endocrinol (Oxf) 76:861–867
Milian M, Teufel P, Honegger J, Gallwitz B, Schnauder G, Psaras T (2012) The development of the Tuebingen Cushing’s disease quality of life inventory (Tuebingen CD-25). Part I: construction and psychometric properties. Clin Endocrinol (Oxf) 76:851–860
McKenna SP, Doward LC, Alonso J, Kohlmann T, Niero M, Prieto L, Wiren L (1999) The QoL-AGHDA: an instrument for the assessment of quality of life in adults with growth hormone deficiency. Qual Life Res 8:373–383
Kitzinger J (1995) Qualitative research. Introducing focus groups. BMJ 311:299–302
Nicolson P, Anderson P (2003) Quality of life, distress and self-esteem: a focus group study of people with chronic bronchitis. Br J Health Psychol 8:251–270
Patterson P, Millar B, Desille N, McDonald F (2012) The unmet needs of emerging adults with a cancer diagnosis: a qualitative study. Cancer Nurs 35:E32–E40
David CL, Williamson K, Tilsley DW (2012) A small scale, qualitative focus group to investigate the psychosocial support needs of teenage young adult cancer patients undergoing radiotherapy in Wales. Eur J Oncol Nurs 16:375–379
Kristiansen TM, Primdahl J, Antoft R, Horslev-Petersen K (2012) Everyday life with rheumatoid arthritis and implications for patient education and clinical practice: a focus group study. Musculoskelet Care 10:29–38
Dorn SD, Hernandez L, Minaya MT, Morris CB, Hu Y, Leserman J, Lewis S, Lee A, Bangdiwala SI, Green PH, Drossman DA (2010) The development and validation of a new coeliac disease quality of life survey (CD-QOL). Aliment Pharmacol Ther 31:666–675
Poole HM, Murphy P, Nurmikko TJ (2009) Development and preliminary validation of the NePIQoL: a quality-of-life measure for neuropathic pain. J Pain Symptom Manag 37:233–245
Hellmann DB, Uhlfelder ML, Stone JH, Jenckes MW, Cid MC, Guillevin L, Moreland L, Dellaripa PF, Hoffman GS, Merkel PA, Spiera R, Brown L, Hernandez-Rodriguez J, Rubin HR (2003) Domains of health-related quality of life important to patients with giant cell arteritis. Arthritis Rheum 49:819–825
Perez L, Huang J, Jansky L, Nowinski C, Victorson D, Peterman A, Cella D (2007) Using focus groups to inform the Neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions. J Neurosci Nurs 39:342–353
Mason VL, Skevington SM, Osborn M (2004) Development of a pain and discomfort module for use with the WHOQOL-100. Qual Life Res 13:1139–1152
Wexler T, Gunnell L, Omer Z, Kuhlthau K, Beauregard C, Graham G, Utz AL, Biller B, Nachtigall L, Loeffler J, Swearingen B, Klibanski A, Miller KK (2009) Growth hormone deficiency is associated with decreased quality of life in patients with prior acromegaly. J Clin Endocrinol Metab 94:2471–2477
van der Klaauw AA, Dekkers OM, Pereira AM, van Kralingen KW, Romijn JA (2007) Increased daytime somnolence despite normal sleep patterns in patients treated for nonfunctioning pituitary macroadenoma. J Clin Endocrinol Metab 92:3898–3903
Wassenaar MJ, Biermasz NR, Kloppenburg M, van der Klaauw AA, Tiemensma J, Smit JW, Pereira AM, Roelfsema F, Kroon HM, Romijn JA (2010) Clinical osteoarthritis predicts physical and psychological QoL in acromegaly patients. Growth Horm IGF Res 20:226–233
Psaras T, Honegger J, Gallwitz B, Milian M (2011) Are there gender-specific differences concerning quality of life in treated acromegalic patients? Exp Clin Endocrinol Diabetes 119:300–305
van der Klaauw AA, Biermasz NR, Hoftijzer HC, Pereira AM, Romijn JA (2008) Previous radiotherapy negatively influences quality of life during 4 years of follow-up in patients cured from acromegaly. Clin Endocrinol (Oxf) 69:123–128
Siegel S, Streetz-van der Werf C, Schott JS, Nolte K, Karges W, Kreitschmann-Andermahr I (2012) Diagnostic delay is associated with psychosocial impairment in acromegaly. Pituitary [epub ahead of print]
Tiemensma J, Kaptein AA, Pereira AM, Smit JW, Romijn JA, Biermasz NR (2011) Negative illness perceptions are associated with impaired quality of life in patients after long-term remission of Cushing’s syndrome. Eur J Endocrinol 165:527–535
Akechi T, Okuyama T, Endo C, Sagawa R, Uchida M, Nakaguchi T, Akazawa T, Yamashita H, Toyama T, Furukawa TA (2011) Patients’ perceived need and psychological distress and/or quality of life in ambulatory breast cancer patients in Japan. Psychooncology 20:497–505
Krueger R, Casey M (2000) Focus groups: a practical guide for applied research, 3rd edn. Sage Publications, Inc., Thousand Oaks
Tiemensma J, Biermasz NR, Middelkoop HA, van der Mast RC, Romijn JA, Pereira AM (2010) Increased prevalence of psychopathology and maladaptive personality traits after long-term cure of Cushing’s disease. J Clin Endocrinol Metab 95:E129–E141
Tiemensma J, Biermasz NR, van der Mast RC, Wassenaar MJ, Middelkoop HA, Pereira AM, Romijn JA (2010) Increased psychopathology and maladaptive personality traits, but normal cognitive functioning, in patients after long-term cure of acromegaly. J Clin Endocrinol Metab 95:E392–E402
Tiemensma J, Kokshoorn NE, Biermasz NR, Keijser BJ, Wassenaar MJ, Middelkoop HA, Pereira AM, Romijn JA (2010) Subtle cognitive impairments in patients with long-term cure of Cushing’s disease. J Clin Endocrinol Metab 95:2699–2714
Spliethoff-Kamminga NG, Zwinderman AH, Springer MP, Roos RA (2003) Psychosocial problems in Parkinson’s disease: evaluation of a disease-specific questionnaire. Mov Disord 18:503–509
Spliethoff-Kamminga NG, Zwinderman AH, Springer MP, Roos RA (2003) A disease-specific psychosocial questionnaire for Parkinson’s disease caregivers. J Neurol 250:1162–1168
A’Campo LE, Spliethoff-Kamminga NG, Roos RA (2011) An evaluation of the patient education programme for Parkinson’s disease in clinical practice. Int J Clin Pract 65:1173–1179
Marks DF, Yardley L (2004) Research methods for clinical and health psychology. TJ International Ltd., Padstow, pp 72–79
Engel GL (1977) The need for a new medical model: a challenge for biomedicine. Science 196:129–136
Spilker BEd (1990) Quality of life assessments in clinical trials. New York: Raven Press, Ltd, 16
Leventhal H, Meyer D, Nerenz D (1980) The common sense representation of illness danger. In: Rachman S (ed) Contributions to medical psychology, 2nd edn. Pergamon, New York, pp 7–30
Horne R, Weinman J, Hankins M (1999) The beliefs about medicines questionnaire: the development and evaluation of a new method for assessing the cognitive representation of medication. Psychol Health 14:1–24
Baker F, Denniston M, Smith T, West MM (2005) Adult cancer survivors: how are they faring? Cancer 104:2565–2576
Lebel S, Tomei C, Feldstain A, Beattie S, McCallum M (2012) Does fear of cancer recurrence predict cancer survivors’ health care use? Support Care Cancer 21:901–906
Tiemensma J, Kaptein AA, Pereira AM, Smit JW, Romijn JA, Biermasz NR (2011) Coping strategies in patients after treatment for functioning or nonfunctioning pituitary adenomas. J Clin Endocrinol Metab 96:964–971
Horne R, Weinman J (2002) Self-regulation and self-management in Asthma: exploring the role of illness perceptions and treatment beliefs in explaining non-adherence to preventer medicaiton. Psychol Health 17:17–32
Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J (2002) Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 48:177–187
A’Campo LE, Wekking EM, Spliethoff-Kamminga NG, Le CS, Roos RA (2010) The benefits of a standardized patient education program for patients with Parkinson’s disease and their caregivers. Parkinsonism Relat Disord 16:89–95
Newman S, Steed L, Mulligan K (2004) Self-management interventions for chronic illness. Lancet 364:1523–1537
We thank all patients for their participation in the focus group conversations and the research interns Esmé Kraaij and Edith Mense for their contribution to this study.
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The authors declare that they have no conflict of interest.
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Andela, C.D., Niemeijer, N.D., Scharloo, M. et al. Towards a better quality of life (QoL) for patients with pituitary diseases: results from a focus group study exploring QoL. Pituitary 18, 86–100 (2015). https://doi.org/10.1007/s11102-014-0561-1
- Pituitary adenomas
- Cushing’s disease
- Non-functioning pituitary macroadenoma
- Qualitative research
- Focus group
- Quality of life
- Coping strategies
- Illness perceptions
- Beliefs about medicines