Easing the Burden of Chronic Pituitary Disease: What Factors Should Be Considered During Care?

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