While pituitary diseases are relatively rare, they are associated with substantial patient burden because of the involvement of multiple organs, the range of comorbidities, and need for intensive treatment. Emerging evidence suggests that even after optimal treatment with surgical and pharmacologic interventions, health-related quality of life (HR-QoL) remains impaired in this patient population.1
As demonstrated in patients with other chronic diseases, “it is hypothesized that potential further improvement of HR-QoL [in patients with pituitary disease] could be established by addressing other elements, such as patient characteristics and the (healthcare) environment, using psychosocial care modalities,” according to a review published in Best Practice & Research Clinical Endocrinology & Metabolism.1
In addition to optimizing the biophysiologic factors in each patient, other areas of functioning that contribute to reduced HR-QoL should also be addressed. For example, studies have revealed that persistent patient-reported outcomes including pain, fatigue, impaired sleep, fluctuating mood and depressive symptoms, reduced self-esteem, sexual dysfunction, fear of tumor recurrence, and neurocognitive impairment (eg, reduced memory or concentration) are noted in people with chronic pituitary disease.1
In addition to symptom status, other factors have also been linked to HR-QoL in these patients:
- Functional status declines, including problems with occupational functioning; for instance, reduced concentration, lower productivity, and job loss are common among patients treated for pituitary tumors.2
- Individual patient characteristics, such as perceptions regarding the illness and beliefs about medication, can influence patients’ coping behaviors. Changes in personality caused by pituitary conditions can also be influential in disease burden.1
- Characteristics of the patient’s environment, including social, psychological, and economic support, may play a role. Prior research has highlighted unmet needs in terms of care and guidance, particularly regarding adverse medication effects, problems pertaining to sexual and occupational functioning, and other issues.1
- Support for patients’ social networks, especially for their partners, may be greatly influential in the care of people with pituitary disease and has been recognized as an area in need of improvement.3
Overall, the researchers involved with the review stated that in addition to optimal biomedical care, “[i]nterventions that pay attention to cognitive functioning, psychological wellbeing, coping behaviour, self-efficacy, social functioning, work, illness perceptions, medication beliefs, quality of the partner relationship and social network are also required to optimize treatment.”1
To assess HR-QoL in this population, it is generally recommended that a generic measure of HR-QoL be combined with a disease-specific measure, such as questionnaires pertaining to acromegaly (ACROQOL) or Cushing disease (CushingQOL). However, because patients with pituitary diseases “usually face a combination of hormone oversecretion, tumour issues and hypopituitarism… a more generic pituitary questionnaire may be preferable,” as noted in the review.1
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?
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.
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.
This article originally appeared on Endocrinology Advisor