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Towards a better quality of life (QoL) for patients with pituitary diseases: results from a focus group study exploring QoL

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Abstract

Purpose

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.

Methods

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.

Results

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).

Conclusions

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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Acknowledgments

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.

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Department of Endocrinology and Metabolic Diseases and Center for Endocrine Tumors Leiden, Leiden University Medical Center, Leiden, The Netherlands

    Cornelie D. Andela, Nicolasine D. Niemeijer, Shaaji Kanagasabapathy, Alberto M. Pereira & Nienke R. Biermasz

  2. Department of Medical Psychology, Leiden University Medical Center, Leiden, The Netherlands

    Margreet Scharloo & Ad. A. Kaptein

  3. Psychological Sciences, University of California Merced, Merced, CA, USA

    Jitske Tiemensma

  4. Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands

    Noëlle G. A. Kamminga

Authors
  1. Cornelie D. Andela
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  2. Nicolasine D. Niemeijer
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  3. Margreet Scharloo
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  4. Jitske Tiemensma
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  5. Shaaji Kanagasabapathy
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  6. Alberto M. Pereira
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  7. Noëlle G. A. Kamminga
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  8. Ad. A. Kaptein
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  9. Nienke R. Biermasz
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Correspondence to Cornelie D. Andela.

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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

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