Improving the Concept of Recovery in Endocrine Disease by Consideration of Psychosocial Issues

Stringent criteria have been established to define remission by hormone parameters in several endocrine disorders. An example is provided by the criteria for cure of acromegaly (1). However, it is clear that such criteria are far from being comprehensive of a patient status, and often there is a need for filling a gap between the “hard data” of laboratory results and imaging findings on one hand, and the “soft information” related to the patient presentation and complaints on the other hand. Indeed, long-standing endocrine disorders may imply a degree of irreversibility of the pathological process and induce highly individualized affective responses based on each patient's psychological assets and liabilities. In recent years, there has been increasing awareness of the unsatisfactory degree of remission that current therapeutic strategies entail in a variety of endocrine disorders. Studies concerned with psychological well-being, functional capacity, and social and interpersonal components of illness have provided new insights in clinical endocrinology (2–4). Psychiatric disturbances and impaired quality of life, which were present in the acute phase of illness, are often found to improve upon normalization of hormonal parameters (2, 3). However, disappearance of psychiatric symptoms and amelioration of quality of life are not always the case. This has been observed in several studies concerned with patients with either pituitary disease (acromegaly, Cushing's disease, hyperprolactinemia, nonfunctioning pituitary adenomas, hypopituitarism, and GH deficiency) or nonpituitary endocrine disorders (thyroid disturbances, primary hyperparathyroidism, primary aldosteronism, adrenocortical insufficiency, and polycystic ovary syndrome) (2). There may be different reasons for a delayed or impaired process of recovery. Hormonal alterations are frequently associated with affective disturbances, which do not always remit upon normalization of blood parameters. Hormone replacement may not fully restore optimal endocrine balance, and subtle dysfunctions may still exert their influence on psychological states. This has been observed particularly in hypopituitarism ensuing from the treatment of pituitary disease (2–4). When surgery is performed (e.g. pituitary microadenomectomy in Cushing's disease), the patient is likely to have expectations of a quick recovery toward his/her former normal condition. Unrealistic hopes of “cure” may foster discouragement and apathy. Harvey Cushing himself had acknowledged the difficult recovery of patients suffering from pituitary disease: “It is even more common for a physician or surgeon to eradicate or otherwise treat the obvious focus of disease, with more or less success, and to leave the mushroom of psychic deviations to vex and confuse the patient for long afterwards, if not actually to imbalance him” (5). Currently, however, the average endocrinologist is still unfamiliar with the psychosocial aspects of patient care, both in terms of personal skills and organizational structure, and lacks an adequate background for facilitating the process of recovery. The customary taxonomy does not include patterns of symptoms, severity of illness, effects of comorbid conditions, timing of phenomena, rate of progression of illness, functional capacity, and other clinical features that demarcate major prognostic and therapeutic differences among patients who otherwise seem deceptively similar because they have the same diagnosis and similar laboratory results. Clinical practice is an endless source of discrepancies between physicians who regard their patients as fully recovered and patients who still perceive a certain degree of impairment. In this perspective, clinimetric methods (concerned with indexes, rating scales, and other expressions that are used to describe or measure symptoms and physical signs) may help in assessing clinical and psychosocial parameters, including subjective aspects (6). Indexes can be divided into ailment-oriented and general. Ailment-oriented scales have the advantage of referring to the specific clinical manifestations of each condition (e.g. acromegaly, Cushing's syndrome, Addison's disease). They have the disadvantage of not allowing comparisons across different diseases. General indexes refer to functional states that are not distinctive for a particular disease (6). Some important domains of general indexes are stress, lifestyle, quality of life, psychological well-being, mood, functional disability, and illness behavior. The evidence that has accumulated so far as to the therapeutic response in various endocrine conditions, such as adult GH deficiency, should lead endocrinologists to a multidimensional consideration of treatment effects, encompassing psychosocial parameters (2, 4, 7). An effect that is significant on both hormone parameters and subjective variables is thus suggested to become a requisite for drug approval and for the development of new treatment modalities. Indeed, the definition of recovery in endocrine disease should not be limited to normalization of hormonal values, but should be broadened to the psychosocial status and functioning of the patient. Patients have become more aware of these issues and their difficulties in coping with endocrine illness, and its often severe psychological consequences have led to the development of several patients' associations. The psychosocial impairment that is associated with incomplete remission from endocrine illness requires novel modalities of clinical interventions, as we outlined by introducing the concept of rehabilitation in endocrinology (7), to allow patients to progress toward an optimized state of health. Rehabilitation in endocrinology may be indicated in the following cases: 1) delayed recovery after appropriate treatment; 2) discrepancy between endocrine status and current functioning; 3) presence of a decline in physical and social functioning; 4) persistence of important comorbidity, with special reference to psychiatric disturbances; 5) abnormal illness behavior; 6) problems with lifestyle and risk behavior; and 7) potential role of stress in endocrine disturbances. An endocrine rehabilitation team should ideally include a trained clinical endocrinologist, a physical therapist, and a psychologist, with opportunities for other specialist consultations. The role of the psychologist would be essential for a more precise definition of the patient's psychological symptoms, for understanding coping difficulties, for modifying risk behaviors, and for offering advice and support to spouses and family members of patients undergoing the various phases of illness. The goal of multidisciplinary approaches would be to ensure education, support, and specific interventions, helping the patient and his/her family to achieve optimal coping with the difficulties of the recovery process (7, 8). The proposal is in line with what is taking place in other fields of medicine. In cardiology, for instance, the core components of rehabilitation programs were identified in the implementation of cardiovascular risk reduction, in fostering healthy behaviors and compliance, in reducing disability, and in promoting an active lifestyle (9). The clinical achievements of a rehabilitation approach are exemplified by a recent randomized controlled trial (10): a large population of patients with poorly controlled diabetes mellitus and/or coronary heart disease, both associated with depression, were assigned to treatment as usual or to an intervention group, in which individualized clinical and self-care goals were employed. Patients in the intervention group displayed a significantly greater improvement in a number of important variables that were targeted (10). Responding to the specific needs of endocrine patients is likely to improve their level of remission. This may imply establishing additional therapeutic strategies, the implementation of physical therapy, and the introduction of targeted psychological treatments. This paper was supported by a grant from MIUR (Ministero dell'Istruzione, Università e Ricerca), Rome, Italy (to N.S.). Disclosure Summary: The authors have nothing to disclose.