Illness-related burden, personal resources and need for support in patients with acromegaly: Results of a focus group analysis

Highlights

• Acromegaly patients experience high illness-related burden.

• Coping strategies include family support, exercise and humor.

• Patients wish for interdisciplinary treatment and specialized rehabilitation.

• Further research is necessary to implement tailored support measures.

Abstract

Objective

It was the aim of this study to evaluate illness-related burdens and support needs of patients with acromegaly to identify hitherto unadressed research questions and to open up avenues for improvements in patient care. This was done by using the focus group approach as a qualitative research method.

Design

Seven patients with acromegaly took part in a focus group moderated by an external medical communication specialist. The discourse focused on topics such as impact of the illness on everyday life, support needs and personal resources. The discussion was recorded and transcribed and analyzed by qualitative content analysis.

Results

Participants reported a huge impact of acromegaly on daily life, ranging from time expenditure for managing their illness, to bodily and mental sequelae and strain caused by physical disfigurement. Patients' coping strategies included family support, physical activities and humor. The participants wished for a sound patient-doctor relationship, more interdisciplinary and holistic treatment, medical rehabilitation services with special knowledge on acromegaly-related morbidity, a stable contact person in the medical process and reliable information material for themselves and their relatives.

Conclusions

The results provide multi-facetted impressions of the overwhelming impact of acromegaly and unmet support needs of the afflicted patients. Further quantitative research is necessary to examine the generalisibility of the present results in order to implement tailored support measures. We suggest to develop standardized questionnaires to explore the prevalence and severity of the addressed problems in a large patient sample and to establish screening instruments to monitor disease burden in clinical practice.

Introduction

Acromegaly is a rare, chronic neuroendocrine disease with a prevalence of approximately 6 per 100.000 persons [1], related to excessive growth hormone (GH) secretion and elevated levels of circulating insulin-like growth factor-I (IGF-I). In more than 99% of all cases, it is caused by a benign pituitary adenoma of somatotrophic origin. Patients gradually develop a characteristic acromegalic phenotype which includes facial disfigurement, acral overgrowth, macrognathia, and soft tissue swelling. Acromegaly also affects multiple organ systems and is associated with excess morbidity, even though remission rates and overall survival have improved with modern multimodal therapies. Treatment of the disease involves pituitary surgery to remove the pituitary adenoma or to at least reduce it in size, medical treatment and, in selected cases, radiotherapy [2,3]. In the light of the above-mentioned, it becomes clear that acromegaly cannot be regarded as a simple somatic disease that is cured by surgery and/or medical interventions, but constitutes a complex illness affecting many aspects of everyday life and its overall quality. This statement is supported by multiple studies showing that QoL in patients with acromegaly is decreased despite biochemical control of the disease [3].The findings of these studies provide a sobering reminder, that a clinically favorable outcome from the viewpoint of the treating physician may still be viewed as a poor outcome from the patients' perspective.

In recent years, a paradigm shift in the treatment of chronic diseases or those which incur protracted disability even after medical cure has occurred: Next to medical therapies and traditional outcome measures, interventions that restore and ameliorate QoL are increasingly and successfully implemented, for example in cancer medicine, multiple sclerosis and diabetes mellitus [[4], [5], [6]]. Yet, for acromegaly, only little research on supportive measures, such as a small study which investigated the effect of a rigorous exercise program [7] and one trial showing that cognitive-behavioral therapy improves QoL of patients with acromegaly [8] has been published. As time frames for medical consultations are limited, it can be easily assumed that the need for support and respective interventions cannot be adequately addressed within a normal doctor's visit. In order to arrive at a more patient-centered care, more knowledge on illness-related daily hassles, need for support and personal resources of patients with acromegaly is required. As little is known about this thematic complex qualitative, participatory research such as focus group analysis can provide important information, which may be helpful toward alleviating QoL impairment in patients with acromegaly. The present study was performed to gain more background information for the development of supportive therapies in patients with acromegaly in order to facilitate their independent daily functioning.