To that end, a patient-reported outcome measure (PROM), the Leiden Bother and Need Questionnaire for pituitary patients, has been developed and is being translated into multiple languages for use in clinical and research settings.1,4 This tool includes 5 subscales (mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, and issues in social functioning) to assess the “extent to which patients with pituitary conditions are bothered by certain complaints, as well as the extent to which they feel a need for support from healthcare professionals.”1

Endocrinology Advisor interviewed Divya Yogi-Morren, MD, endocrinologist at Cleveland Clinic, for additional insights regarding this topic.  

Endocrinology Advisor: What are some of the key factors that influence HR-QoL in patients with pituitary disorders?


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Divya Yogi-Morren, MD: The biological and physiologic status of the patient — specifically hormonal status — was previously thought to be an important factor in the HR-QoL of patients with pituitary disorders. However, several studies have shown that despite hormone replacement and optimization of the biochemical status, HR-QoL remains low.

The patient’s perception of their symptoms, their ability to carry out their activities of daily living, and overall functional status are key components that factor into HR-QoL. Every patient is different, and the individual characteristics of each patient play an important role in their perception of HR-QoL. Their individual coping mechanisms, personality, and beliefs about health and illness play an important role. Their current environment and whether they have a strong family and social network for support are important factors that affect QoL.

Endocrinology Advisor: How should clinicians address these factors in practice — including screening, treatment, and when to collaborate with other specialists?

Dr Yogi-Morren: Asking questions during office visits to screen for and address each of these factors is critical. The use of standardized HR-QoL questionnaires may be useful and could be incorporated into one’s clinical practice in order to ensure that these factors are adequately screened for and identified and that the needs are addressed. The need for collaboration with other subspecialties may be identified through astute history taking, and early referral improves the patient’s perception that their symptoms are being acknowledged and addressed. Referral for counseling and social services is critical and improves the psychological and social support systems that are key environmental factors in the HR-QoL.

Endocrinology Advisor: What are other key considerations for clinicians who treat these patients?

Dr Yogi-Morren: It is important to remember that pituitary disease is a chronic disease and to discuss this with the patient honestly at each visit — this will help in managing the expectations of the patient. Involvement of the patient’s spouse and family is critical to establish support for the patient.

Endocrinology Advisor: What are examples of remaining needs in this area?

Dr Yogi-Morren: It is clear that, apart from optimizing the biomedical interventions such as surgery and adequate hormone replacement, we also need to consider the psychosocial factors, coping mechanisms, perceptions about medications and illness, and the social and family support that influence HR-QoL. Pituitary diseases are chronic conditions, but they are rare and lack the support services that are well developed for other, more common chronic diseases such as diabetes. However, it is critical to be cognizant of this chronicity and direct our efforts toward ensuring that these patients have access to the support services that are necessary for the successful management of a chronic condition.

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References

1. Biermasz NR. The burden of disease for pituitary patients. Best Pract Res Clin Endocrinol Metab. 2019;33(2):101309.

2. Lobatto DJ, Steffens ANV, Zamanipoor Najafabadi AH, et al. Work disability and its determinants in patients with pituitary tumor-related disease. Pituitary. 2018;21(6):593-604.

3. Andela CD, Tiemensma J, Kaptein AA, et al. The partner’s perspective of the impact of pituitary disease: looking beyond the patient. J Health Psychol. 2019; 24(12);1687-1697.

4. Andela CD, Scharloo M, Ramondt S, et al. 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.