Acromegaly increases depressive symptoms and reduces quality of life of cohabitants.

PURPOSE: To assess how living with patients with acromegaly affects people's psychology and quality of life (QoL). METHODS: Acromegaly patients and their cohabitants included in this study. Patients were administered Acromegaly Quality of Life Questionnaire (AcroQoL), Beck Anxiety Inventory (BAI), and Beck Depression Inventory (BDI). Cohabitants were administered quality of life questionnaire (SF-36), BAI, BDI, and Zarit Caregiver Burden Interview (ZBI). RESULTS: This study included 84 patients with acromegaly and 84 cohabitants. Sixty-nine patients (n = 84, 82.1%) had an acromegalic appearance. Cohabitants who were affected by the acromegalic appearance had higher BAI, BDI, and ZBI scores than those who were not affected (p < 0.001 for all). Cohabitants who were affected by the acromegalic appearance had a significantly lower SF-36 score (p = 0.015). The BAI (r=-0.535, p < 0.001), BDI (r=-0.592, p < 0.001), and ZBI (r=-0.465, p < 0.001) scores of the cohabitants showed a negative correlation with AcroQoL. SF-36 scores showed correlation with AcroQoL (r = 0.387, p < 0.001). CONCLUSION: The chronic process of acromegaly and the external appearance of patients with this disease can negatively affect both the patients and the people living with them. Physicians being aware of this effect and taking counteractive measures may contribute positively to the course of acromegaly.

Psychosocial effects and clinic reflections of the COVID-19 outbreak in patients with acromegaly and Cushing's disease.

PURPOSE: Patients with acromegaly and Cushing's disease (CD) may experience significant problems related to the COVID-19 outbreak. We aimed to investigate the psychosocial effects of the pandemic and reveal the follow-up characteristics. METHODS: The single center, cross-sectional, web-based survey study included patients with acromegaly and CD, PCR-confirmed COVID-19 patients and healthy volunteers without known any chronic disease. The semi-structured sociodemographic data form, The State-Trait Anxiety Inventory (STAI) and Impact of Event Scale-Revised (IES-R) were used. RESULTS: We examined 583 people (217 acromegaly, 127 CD, 102 PCR-confirmed COVID-19 patients and 137 healthy controls). The frequency of abnormal state anxiety and post-traumatic stress disorder (PTSD) were similar in patients with acromegaly and CD and healthy controls, and higher in PCR-confirmed COVID-19 patients than in these three groups (p < 0.001 for both). The frequency of abnormal trait anxiety was higher in patients with acromegaly and PCR-confirmed COVID-19 compared to patients with CD and healthy controls (p = 0.027, p < 0.001, respectively). There were no significant differences between the acromegaly and CD groups in terms of follow-up characteristics and perception of the severity of the COVID-19 outbreak (p > 0.05 for all). But, the treatment discontinuation rate was higher in patients with acromegaly than CD (p = 0.012). CONCLUSIONS: Our findings indicate that acromegaly and CD patients are psychologically less affected than PCR-confirmed COVID-19 patients and exhibit similar findings the general population. The clinicians should consider the psychosocial effects, as well as focus on the regular follow-up and medical treatments of these patients during the outbreak.

Patient-Centered Outcomes with Pituitary and Parasellar Disease.

Over the last 2 decades, advances in the diagnosis and management of pituitary diseases have made it possible to attain an endocrine "cure" in a large proportion of patients. In other words, tumors can be excised or controlled with drugs, mass effects of the lesion on surrounding structures can be solved, and pituitary deficiencies can be substituted with all relevant hormones. While this is considered a satisfactory outcome for health care providers, patients often suffer from an aftermath of prior endocrine dysfunction exposure, with irreversible effects, both physically and psychologically, which have a great impact on their everyday life. Diagnostic delay, often of several years, adds a negative impact on health perception. This affects their social, professional, and family domains and determines their future life. Understanding that this may occur is important, and health care providers should offer information to prepare the patient for this difficult journey, especially in the case of acromegaly, Cushing disease, or hypopituitarism. In order to maintain a good quality of life (QoL) in the long-term, patients need to adapt to this new situation, something that may be difficult, since they often cannot continue with all the activities and rhythm they used to do. Depression is often the consequence of maladaptation to the new situation, leading to impaired QoL.

Correlations of clinical parameters with quality of life in patients with acromegaly: Taiwan Acromegaly Registry.

BACKGROUND/PURPOSE: The objectives of this study were to evaluate the associations between clinical parameters and quality of life (QOL) of patients with acromegaly in Taiwan and to identify the impacts of hormone control, regimens, or co-morbidities on acromegalic patients' daily life. METHODS: From 2013 to 2015, subjects with acromegaly were recruited through five medical centers. Clinical data were recorded. The QOL of enrolled patients were assessed by using Acromegaly Quality of Life Questionnaire (AcroQoL). RESULTS: This study enrolled 272 acromegalic subjects (117 males, 155 females). Remission, defined by normalization of IGF-1, had significant positive association with QOL scores in psychological/appearance (PSY/APP) dimension (ß = 6.760, p = 0.023). Somatostatin analogues therapy had negative associations with total score and score in psychological (PSY) dimension (ß = -4.720, p = 0.046 and ß = -5.388, p = 0.035, respectively). Diabetes mellitus had negative associations with score in PSY dimension and psychological/personal relations (PSY/PER) dimensions (ß = -5.839, p = 0.034 and ß = -7.516, p = 0.013, respectively). Cerebral vascular accident (CVA) had significant negative associations with total score and scores in physical (PHY), PSY, and PSY/PER dimensions (ß = -26.632, p = 0.013; ß = -28.353, p = 0.024; ß = -25.648, p = 0.026; and ß = -34.586, p = 0.006, respectively). All these associations remained significant even after adjusted with sex and age. CONCLUSION: Our analysis suggested that not only hormone control but also therapeutic regimens and presence of co-morbidities might affect QOL of patients with acromegaly in some dimensions.

Impaired quality of life in patients with treated acromegaly despite long-term biochemically stable disease: Results from a 5-years prospective study.

OBJECTIVE: Patients with acromegaly demonstrate impaired quality of life (QoL), but data on long-term QoL changes in treated acromegaly are limited. This study evaluates and identifies factors that influence QoL in patients with long-term biochemical remission. DESIGN: The study consists of a cross-sectional arm comparing QoL between patients with treated and controlled acromegaly and healthy controls; and a longitudinal arm assessing QoL changes in patients with biochemically stable disease during 5.7±0.6 years of follow-up. PATIENTS: A total of 58 patients and 116 matched controls were recruited for the cross-sectional arm; 28 patients completed the longitudinal arm. MEASUREMENTS: Three generic questionnaires (Psychological General Well-Being Schedule [PGWBS], 36-item Short-Form [SF-36], EuroQoL [EQ-5D]) and the disease-specific acromegaly QoL questionnaire (AcroQoL) were applied. RESULTS: Quality of life assessment was performed 11.6±8.2 years following diagnosis and treatment of acromegaly. Patients with treated acromegaly had lower QoL scores compared with controls in all questionnaires with the exception of the PGWBS "Anxiety" subscale. The AcroQoL "Appearance" subscale and the "Physical Function" subscales of the remaining questionnaires were the most underscored domains. No difference in the total and subscale scores of all questionnaires was observed between baseline and follow-up, with the exception of the SF-36 "Physical Function," where a decline was found (58.5±24.7% vs 43.1±31.1%; P=.002). However, after adjusting for covariates, no significant change in any of the QoL scores was seen. Duration of IGF-1/GH control was positively correlated with QoL scores in most questionnaires at baseline, whereas use of GH lowering therapy at the time of QoL assessment was a negative predictive factor of QoL. CONCLUSION: Patients with biochemically controlled acromegaly demonstrate impaired QoL, which persists despite long-term disease control. This primarily consists of impaired physical function and secondly of impaired psycho-social well-being. Duration of biochemical disease control and current use of GH lowering therapy was the predominant factors determining patients' QoL.

Body Image Perception in Acromegaly Is Not Associated with Objective Acromegalic Changes but Depends on Depressive Symptoms.

OBJECTIVE: Diagnosis of acromegaly is delayed up to 10 years after disease onset despite obvious external/objective changes such as bone and soft tissue deformities. We hypothesized that a lack of subjective perception of the disease state, possibly mediated by psychiatric or cognitive alterations, might contribute to the delayed initiation of a diagnostic workup. DESIGN: Cross-sectional study. METHODS: We investigated perceived body image by standardized questionnaires (FKB-20: Fragebogen zum Körperbild; FBeK: Fragebogen zur Beurteilung des eigenen Körpers) in 81 acromegalic patients and contrasted them to (a) a clinical control group of 60 patients with nonfunctioning pituitary adenomas (NFPA) who lack severe facial and physical alterations and (b) healthy controls. We further evaluated body image in relation to objective acromegalic changes as judged by medical experts and psychiatric pathology, e.g. depression and cognitive impairment. RESULTS: Patients with acromegaly did not lack subjective perception of the disease state; they showed more negative body image, less vitality, more insecurity/paresthesia and more accentuation of the body compared to normal controls. NFPA patients differed from acromegalic patients only in the 'vital body dynamics' scale of the FKB-20, although they hardly exhibit any physical/bodily changes. Depression correlated with worse body image. No associations were found between body image and objective acromegalic changes as judged by medical experts, cognitive decline or treatment status. CONCLUSIONS: Negative body image in acromegalic patients is unrelated to their objective appearance and similar to those of NFPA patients without major bodily changes. Depression, but not cognitive decline or treatment status, contributes to negative body image.

PREDICTORS OF QUALITY OF LIFE IN 165 PATIENTS WITH ACROMEGALY: RESULTS FROM A SINGLE-CENTER STUDY.

OBJECTIVE: Even if treated, acromegaly has a considerable impact on patient quality of life (QoL); despite this, the exact clinical determinants of QoL in acromegaly are unknown. This study retrospectively examines a cohort of treated patients with acromegaly, with the aim of identifying these determinants. METHODS: Retrospective survey analysis, with 165 patients included in the study. All patients completed a survey, which included demographic data and the clinical details of their disease, the Short Form-36 Health Survey (SF-36), the revised Beck Depression Inventory (BDI-II), and the Bern Embitterment Inventory (BEI). Stepwise regression was used to identify predictors of QoL. RESULTS: The strongest predictors of the physical component score of the SF-36 were (in order of declining strength of association): Delay between first presentation of the disease and diagnosis, body mass index (BMI), number of doctors visited before the diagnosis of acromegaly, and age at diagnosis. For the mental component score, the strongest predictors were: number of doctors visited, previous radiotherapy, and age at study entry; and, for the BDI-II score: number of doctors visited, previous radiotherapy, age at study entry, and employment status at the time of diagnosis. The following were predictors of the BEI score: number of doctors visited, and age at study entry. CONCLUSION: Diagnostic delay and lack of diagnostic acumen in medical care provision are strong predictors of poor QoL in patients with acromegaly. Other identified parameters are radiotherapy, age, BMI, and employment status. An efficient acromegaly service should address these aspects when devising disease management plans. ABBREVIATIONS: BDI-II = Beck Depression Inventory II BEI = Bern Embitterment Inventory BMI = body mass index IGF-1 = insulin-like growth factor 1 MCS = mental component summary (score) PCS = physical component summary (score) QoL = quality of life SDS = standard deviation score SF-36 = Short Form-36 Health Survey.

Evaluation of depressive mood and cognitive functions in patients with acromegaly under somatostatin analogue therapy.

AIMS: Acromegaly is caused by a pituitary adenoma that releases excess growth hormone (GH) and a concomitant increase in insulin-like growth factor 1 (IGF-1). Acromegaly results not only in phenotypic changes, but also in neurologic complications as peripheral neuropathy and cognitive dysfunction. This study aimed to compare depressive mood and cognitive function in patients with acromegaly and in healthy controls as well as to determine the factors underlying cognitive dysfunction in the acromegalic patients. MATERIALS AND METHODS: This study included 42 patients with acromegaly that were receiving somatostatin analogue therapy and 44 healthy controls. Memory, attention, visuospatial function, inhibitory function, abstract thinking, verbal fluency, and depressive mood were measured in the patients and controls. RESULTS: Patients with acromegaly had lower learning (p = 0.01), planning (p = 0.03), complex attention and inhibitory function (p = 0.04) scores than the controls. There was no significant difference in depressive mood between the patients and controls (p > 0.05). Gamma knife radiosurgery did not negatively affect cognitive function (p > 0.05). CONCLUSION: The present findings show that acromegaly negatively affects learning, attention, and planning.

Changes in quality of life in patients with acromegaly after surgical remission - A prospective study using SF-36 questionnaire.

Patients with acromegaly have a compromised quality of life (QOL). Modern surgical techniques have improved the surgical cure rate. However, there are no prospective studies reporting postoperative changes in QOL among patients cured solely by surgery. The aim of the present study was to determine the effect of surgery on QOL using the 36-item short form health survey (SF-36) questionnaire. SF-36 scores comprise 3 components: the physical component summary (PCS), the mental component summary (MCS) and role-social component summary (RCS). Included in this prospective cohort were 41 patients with acromegaly who underwent surgery alone and achieved postoperative normalization of insulin-like growth factor-1. All participants completed the SF-36 preoperatively and 1 year postoperatively. Preoperatively, RCS and 4 subscale scores (role physical, social functioning, role emotional, mental health) were below the set standards for the normal population. Postoperatively, the PCS and RCS scores did not change significantly, but the MCS score improved significantly (from 48.1 ± 11.3 to 51.7 ± 8.9, p=0.03). Further we compared the QOL of 26 patients whose nadir GH level was < 0.4 µg/L during postoperative oral glucose tolerance testing (complete remission group) with that of 15 patients whose nadir GH level was ≥ 0.4 µg/L (partial remission group). There were no significant differences between these groups in terms of PCS, MCS, RCS, or any subscale scores. In conclusion, surgical remission mostly improved the participants' mental condition. There was no difference in QOL between patients who achieved the new remission criteria and those who did not.

Effects of lanreotide Autogel primary therapy on symptoms and quality-of-life in acromegaly: data from the PRIMARYS study.

PURPOSE: To evaluate the effects of lanreotide Autogel on patient-reported outcomes and association with biochemical control, using PRIMARYS data. METHODS: PRIMARYS was a 1-year, open-label study of lanreotide Autogel (Depot in USA) 120 mg every 4 weeks in 90 treatment-naïve patients with acromegaly. Symptoms were assessed using Patient-assessed Acromegaly Symptom Questionnaire (PASQ) and health-related quality of life (HRQoL) using the AcroQoL questionnaire. Correlations between PASQ and AcroQoL scores, and between PASQ/AcroQoL and growth hormone (GH)/insulin-like growth factor-1 (IGF-1) levels were also evaluated (post hoc). RESULTS: Acromegaly symptoms and HRQoL significantly improved from week 12 to week 48, with modest correlations at week 48 between PASQ total score (R = -0.55, p < 0.0001) and AcroQoL global and physical scores (R = -0.67, p < 0.0001). Approximately 60% of patients achieved a minimal important difference (MID; improvement >50% of baseline standard deviation) in PASQ total score and >40% achieved a MID in AcroQoL global score (post hoc). Changes in PASQ scores were similar in biochemically controlled (GH levels ≤2.5 µg/L and normal IGF-1 levels) and uncontrolled groups, while changes in global and psychological AcroQoL scores were greater in the controlled group. There was no correlation between changes in PASQ or AcroQoL scores and changes in GH or IGF-1 levels. CONCLUSIONS: Primary treatment with lanreotide Autogel over 1 year was associated with rapid and sustained improvements in clinical signs and symptoms and HRQoL in patients with acromegaly. Improvements in HRQoL, but not symptoms, were greater in those achieving biochemical control (ClinicalTrials.gov: NCT00690898; EudraCT: 2007-000155-34).

[Acromegaly: recognition of a rare disease in psychiatric practice]. / Acromegalie, herkenning van een zeldzame ziekte in de psychiatrie.

BACKGROUND: Acromegaly is a rare disease which is caused by a tumour in the anterior lobe of the pituitary gland. The tumour stimulates excessive production of the growth hormone. As a result, all the organs and tissues in the body are induced to grow. This growth is responsible for a wide range of symptoms, some of which can be neuro-psychiatric.
AIM: To promote the early detection of acromegaly so that treatment can be started as soon as possible and further damage can be prevented.
METHOD: We searched PubMed for articles relating to quality of life and cognitive, psychological and psychiatric symptoms and personality changes associated with acromegaly.
RESULTS: We describe the pathophysiology and epidemiology of acromegaly. Then we present the characteristic, external changes, neuro-cognitive complications, psychiatric disorders, personality changes and relevant comorbid somatic symptoms. Acromegaly is a disease in which patients, long before being diagnosed, present with cognitive and affective disorders. Before patients are diagnosed, they have often visited several consultants in connection with their nonspecific symptoms.
CONCLUSION: We believe that in everyday practice patients with acromegaly are frequently misdiagnosed. If patients present with extensive somatic co-morbidity and treatment-resistant depression and particularly if these symptoms are combined with the typical external features of acromegaly, then acromegaly can be suspected and further investigation should proceed without delay.

Towards a better quality of life (QoL) for patients with pituitary diseases: results from a focus group study exploring QoL.

PURPOSE: Patients treated for pituitary adenomas generally report a reduced quality of life (QoL). At present, the patient's perspective of QoL has not been fully addressed and this, and further insight in potential determinants of QoL in pituitary diseases is required to design strategies to improve QoL. We aimed to define patients' perceived QoL and to identify potential factors they perceive to contribute to QoL. METHODS: We conducted four independent focus groups of six patients each, per specific pituitary disease (Cushing's disease, Non-functioning pituitary macroadenoma, acromegaly, prolactinoma). In two sessions these focus groups discussed aspects of QoL. Verbatim transcripts were analyzed using a grounded theory approach. RESULTS: The issues raised by the patient groups were compatible with statements and items of available QoL questionnaires. In addition, other QoL aspects emerged, such as visual limitations (physical problems); issues with a desire to have children/family planning, fear of collapsing, fear of recurrence, panic, persisting thoughts, problems with an altered personality, anger, jealousy, sadness, frustration (psychological problems); and difficulties communicating about the disease, lack of sympathy and understanding by others, and a reduced social network (social problems). Next, this study uncovered factors which might contribute to a decreased QoL (e.g. less effective coping strategies, negative illness perceptions, negative beliefs about medicines, unmet needs regarding care). CONCLUSIONS: This focus group study demonstrated that important disease-specific aspects of QoL are neglected in current pituitary disease-specific questionnaires and elucidated potential factors that contribute to a decreased QoL. Information provided in this study can (and will) be used for developing additional items for disease-specific QoL questionnaires and for the development of a self-management intervention aiming to improve QoL in patients treated for pituitary diseases.

Persistent self-consciousness about facial appearance, measured with the Derriford appearance scale 59, in patients after long-term biochemical remission of acromegaly.

CONTEXT: Acromegaly is associated with impaired quality of life (QoL) and causes anatomical disproportions, which may contribute to the decreased QoL after successful treatment. The Derriford appearance scale 59 (DAS59) is a questionnaire measuring psychological distress and disruptions to everyday life associated with self-consciousness of appearance. OBJECTIVE: Investigate the psychological distress and dysfunction related to self-consciousness about appearance and its effect on QoL in patients in long-term remission of acromegaly. PATIENTS, DESIGN AND METHODS: Patients (>18 years old) treated for acromegaly at the Department of Endocrinology of the Radboud University Medical Center Nijmegen were invited to participate. A gender-, age- and body mass index matched control group was provided by the patients themselves. Participants were asked to complete the modified DAS59-, research and development 36- (RAND-36), acromegaly quality of life questionnaire (AcroQoL) and a sociodemographic questionnaire. Differences between patient- and control groups and correlations between questionnaire scores and clinical characteristics collected from medical records were analyzed. MAIN OUTCOME MEASURES: Questionnaire scores. RESULTS: Of the 120 respondents, 73 agreed to participate [all cured or under biochemical control, median remission time 10.5 years (range 2.3-43.6 years)]. Of these, 34 (46.6%) reported self-consciousness about their appearance. Twenty-nine of these patients (85.3%) pointed out their face to be a prominent source of self-consciousness. Fifty-seven matched control subjects were included as well. Significant correlations were found between the scores of the DAS59 and the AcroQoL, RAND-36 and VAS in patients. CONCLUSIONS: Even after long-term remission of acromegaly, a large number of patients are self-conscious about their appearance, leading to psychological distress and disruptions to everyday life and decreased QoL. Facial features were the most important source of self-consciousness. This stresses the importance of addressing self-consciousness of appearance and the need for additional support in this regard during follow-up in these patients.

Endoscopic transphenoidal surgery for acromegaly improves quality of life.

BACKGROUND: Acromegaly has important effects on quality of life (QOL). This is the first study to measure QOL in acromegalic patients after endoscopic transsphenoidal surgery (ETSS). METHODS: We prospectively collected the RAND-36, Center for Epidemiologic Studies Depression (CES-D), and Pituitary QOL validated questionnaires and patients' demographics, clinical presentation, endocrine laboratory results, radiological studies, development of complications and remission rates from 20 consecutive acromegalic patients who had undergone endoscopic transphenoidal surgery. RESULTS: The eleven females and nine males had an average age of 42 years; 90 percent had macroadenomas and 70% had cavernous sinus invasion on their preoperative imaging. Ninety percent had improved symptoms post-operatively and 80% stated that treatment improved their QOL. Biochemically, 35% were cured, 35% had discordant results and 30% were not cured, while pan-hypopituitarism occurred in 4 patients. Physical health subscales and pituitary-related symptoms were similar to norms. "Social," "emotional health," and "energy levels" were significantly lower than norms. Seventy percent stated that their relationship with their physician "very much so" affected their quality of life. Pan hypopituitarism and adjuvant therapy were the most significant predictors of lower QOL subscale scores. CONCLUSION: Transsphenoidal surgery improves QOL in acromegaly. Attempts to achieve a cure, avoidance of surgically induced pan-hypotpituitarism and adjuvant therapy, will improve quality of life. Our study demonstrates the important role of the patient-physician relationship to QOL and the need to measure QOL in addition to the traditional measures of outcome.

Patient-focussed outcomes in acromegaly.

BACKGROUND: Health-related quality of life (QoL) is severely impaired in acromegaly due to the physical and psychological consequences of the disease. Pharmacological and surgical treatments, when available, can improve QoL and life expectancy. CASE DESCRIPTION: A 34-year-old male with uncontrolled acromegaly due to a large and invasive macroadenoma, which could not be resected by transsphenoidal surgery. Over 9 years, he had limited access to pharmacological interventions and persisted with clinically and biochemically active disease, with severe co-morbidities and a poor QoL, which eventually lead to a premature sudden death. CONCLUSION: This case highlights the impact that active acromegaly has when treatment resources are limited. We review the factors contributing to poor QoL in this disease, with special reference to the Latin American scenario.

Biochemical and quality of life responses to octreotide-LAR in acromegaly.

OBJECTIVES: AcroQoL is a questionnaire developed to assess quality of life in patients with acromegaly, covering physical and psychological dimensions. This study was designed to determine AcroQoL score changes and concentrations of growth hormone (GH) and insulin-like growth factor 1 (IGF-1), before and after treatment with octreotide-LAR (oct-LAR) in acromegaly. METHODS: Retrospective observational study of 28 acromegalic patients with a mean age of 45 years (range 28-64), evaluated over a 4-year period, before and during treatment with oct-LAR in clinical practice conditions. RESULTS: Baseline AcroQoL score (53 ± 15) improved after oct-LAR treatment (70 ± 15) globally for the 28 patients (p < 0.001). Three patients in whom AcroQoL score did not improve over time had severe headaches, which did not disappear. In patients who normalized, both GH (<2.5 µg/L) and IGF-1, AcroQoL score increased on average by 22 points (p = 0.003); when GH and IGF-1 improved, but did not normalize, AcroQol score increased on average by 16 points (p = 0.008). In 6 patients with discordant results, AcroQol score tended to improve if IGF-1 normalized (n = 4, p = 0.066), but not if IGF-1 remained high. CONCLUSION: Oct-LAR therapy in acromegaly improved quality of life scores in parallel to biochemical markers, except in patients with severe headaches. The AcroQoL questionnaire is an additional tool to establish therapeutic effectivity.

Impact of treatment satisfaction on quality of life of patients with acromegaly.

PURPOSE: To evaluate satisfaction of acromegalic subjects with their medical treatment and its contribution to their quality of life. METHODS: This cross-sectional study included a total of 159 medications used in 133 subjects with acromegaly (controlled n = 84 and uncontrolled n = 49, female/male: 81/52). Subjects were asked to complete questionnaires on symptoms of depression (BDI) and satisfaction with the medical therapy they received for acromegaly (TSQM). Acromegaly cases also completed Acromegaly Quality of Life Questionnaire (AcroQoL). RESULTS: Subjects on pegvisomant therapy scored lower on convenience (p = 0.007). Cases on combination therapy had lower domain scores for effectiveness, convenience and global satisfaction in comparison to the cases on monotherapy (p = 0.01, p = 0.01 and p = 0.01, respectively). The time elapsed since diagnosis and the duration of medical therapy were positively correlated with effectiveness score (r = 0.2, p = 0.007 and r = 0.2, p = 0.04, respectively). The AcroQoL score was positively correlated with all domains of TSQM (for effectiveness r = 0.2, p = 0.01; for side effects r = 0.3, p = 0.001; for convenience r = 0.3, p = 0.004 and for global satisfaction r = 0.2, p = 0.01). In contrast, the BDI score was inversely correlated with all domains of TSQM (for effectiveness r = -0.3, p = 0.001; for side effects r = -0.2, p = 0.006; for convenience r = -0.3, p < 0.001 and for global satisfaction r = -0.3, p = 0.001). CONCLUSION: In acromegaly, quality of life, status of depression and satisfaction of the subjects with their treatment are intercorrelated.

Quality of life in patients with acromegaly: a scoping review.

PURPOSE: To evaluate the available evidence regarding the quality of life (QoL) in patients with acromegaly, by synthesizing the psychosocial factors of QoL, QoL measures, and complementary interventions targeting QoL. METHODS: A scoping review was conducted using the PRISMA-ScR guideline. We searched six English databases (PubMed, Embase, CINAHL, Scopus, Web of Science, and the Cochrane Library) from the inception to August 21, 2023. We included observational studies involving psychosocial factors and complementary interventions targeting QoL (concept) in patients with acromegaly (population) in any setting (context). The design characteristics, psychosocial factors, measures, details of interventions, and outcomes of included studies were described in detail. RESULTS: Twenty-one studies were identified, including sixteen cross-sectional studies and five interventional studies. Ten categories of psychosocial factors that are associated with QoL in acromegaly. Depression and anxiety were the most frequent psychosocial factors. Seven different validated QoL measures were used. AcroQoL was the most common measure. Two categories of complementary interventions targeting QoL were identified including psychological and exercise interventions. CONCLUSIONS: Our scoping review provides a reasonably clear picture of the current research status of QoL in acromegaly. However, this review also highlights the need to deepen understanding of QoL and psychosocial factors in the future, as well as conduct longitudinal research and qualitative research to clarify the changing trends of psychosocial factors and specific experiences of patients. Further, more potential clinical complementary interventions are needed to improve QoL for patients with acromegaly.

The effect of coping strategies on health-related quality of life in acromegaly patients.

PURPOSE: Patients with acromegaly oftentimes exhibit a reduced physical and psychological health-related quality of life (HRQoL). Maladaptive coping styles are associated with poor HRQoL in a number of diseases and patients with pituitary adenomas in general exhibit less effective coping styles than healthy controls. This study aimed to assess coping strategies in acromegaly patients in order to explore leverage points for the improvement of HRQoL. METHODS: In this cross-sectional study, we administered self-report surveys for coping strategies and HRQoL (Short Form SF-36, Freiburg questionnaire on coping with illness, FKV-LIS) in patients with acromegaly. These were set into relation with a variety of health variables. RESULTS: About half of the 106 patients (44.3% female) with a mean age of 56.4 ± 1.3 years showed impaired physical and psychological HRQoL on average 11.2 years after the initial diagnosis. Body mass index, age at survey date and concomitant radiotherapy explained 27.8% of the variance of physical HRQoL, while depressive coping added an additional 9.2%. Depressive coping style and trivialization and wishful thinking were pivotal predictors of an impaired psychological HRQoL with a total explained variance of 51.6%, whereas patient health variables did not affect psychological HRQoL. CONCLUSION: Our results show that maladaptive coping styles have a substantial negative impact on psychological HRQoL in patients with acromegaly, whereas physical HRQoL is influenced to a lesser extent. Specialized training programs aimed at improving coping strategies could reduce long-term disease burden and increase HRQoL in the affected patients.

Diagnostic delay is associated with psychosocial impairment in acromegaly.

The aim of this study was to systematically assess health care utilisation, diagnostic delay and psychosocial impairment in patients with acromegaly in rural versus urban health care environments. 41 patients with acromegaly were questioned to time lapse of symptom onset, first seeking medical advice and time of acromegaly diagnosis. Quality of life (QoL), and psychosocial impairment (depression, daytime sleepiness, sleep disturbances, disturbances of body image) were measured by self-assessment questionnaires. Patients were grouped into living in rural health care environments (RHCE, n = 22 patients) or urban health care environments (UHCE, n = 19 patients) using data on population density from the German Federal Statistical Office. RHCE patients waited significantly longer (2.5 vs. 0.89 years; p = .025) after symptom onset before seeking medical advice, but diagnosis of acromegaly was established at least as quickly as in UHCE (1.45 vs. 2.74 years; n.s.). There was a consistent trend toward more psychosocial impairment in UHCE which reached significance for sleep disturbances (p = .004). For all patients significant correlations between time delay of diagnostic process (defined as first visit to the doctor because of acromegaly-related symptoms and establishment of acromegaly diagnosis) and psychological QoL, depression, daytime sleepiness, sleep disorders and body image emerged. Patients with acromegaly in UHCE experienced more psychosocial impairment than patients in RHCE. The correlation of significantly increased psychosocial impairment and delay of diagnosis by the physician may reflect long-lasting embitterment in patients with acromegaly and should be considered during psychosocial counselling.