RESUMO
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.
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Acromegalia , Qualidade de Vida , Humanos , Acromegalia/psicologia , Depressão/psicologia , Estudos Transversais , Ansiedade/psicologiaRESUMO
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.
Assuntos
Acromegalia , Adaptação Psicológica , Qualidade de Vida , Humanos , Acromegalia/psicologia , Qualidade de Vida/psicologia , Feminino , Pessoa de Meia-Idade , Masculino , Estudos Transversais , Adulto , Idoso , Depressão/psicologia , Inquéritos e Questionários , Nível de Saúde , Capacidades de EnfrentamentoRESUMO
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.
Assuntos
Acromegalia , Humanos , Acromegalia/psicologia , Qualidade de Vida , Depressão , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: The main aim of the study was to investigate the factors related to the biopsychosocial complexity in the group of patients with acromegaly with different disease activity. METHODS: A cross-sectional observational study was performed. First, a linguistic adaptation of the INTERMED - self-assessment questionnaire (IMSA) and after that the assessment of the biopsychosocial complexity among patients with acromegaly and the factors which relate to the complexity was made. The following tools were used to assess: biopsychosocial complexity: The INTERMED -self-assessment (IMSA); quality of life: The World Health Organization Quality of Life - BREF (WHOQoL) and Acromegaly Quality of Life questionnaire (AcroQol); mental state: The General Health Questionnaire - 28 (GHQ-28). RESULTS: The final analysis included 71 patients. According to the principal component analysis the mental state (GHQ-28) and the quality of life (AcroQol) are the most important factors related to the clinical complexity among patients with acromegaly. In the model created by a stepwise regression analysis for the total IMSA score higher growth hormone (GH) concentration, longer illness duration, and better general quality of life were included as the protective factors of the clinical complexity. By contrast, a high score in the severe depression subscale of GHQ-28 was a factor of higher clinical complexity. CONCLUSION: The mental state and quality of life are the most important determinants of the clinical complexity in the group of patients with acromegaly whereas the biochemical normalization is of lesser importance.
Assuntos
Acromegalia , Hormônio do Crescimento Humano , Acromegalia/psicologia , Estudos Transversais , Humanos , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Acromegaly is a chronic disease significantly affects the physical, emotional, and health-related aspects of patients' life. This study aimed to validate the Acromegaly Quality of Life Questionnaire (AcroQoL) for the Persian-speaking population. METHODS: This cross-sectional study recruited 73 Iranian patients with a confirmed diagnosis of acromegaly. The content validity of the scales was evaluated by an expert panel of eight endocrinologists applying content validity index (CVI) and content validity ratio (CVR). Construct validity was assessed by using confirmatory factor analysis. Internal consistency was assessed on the basis of Cronbach's alpha, and a goodness-of-fit (GoF) index was calculated to display whether the model fitted the data. RESULTS: CVI and CVR yielded values of 0.85 and 0.80, respectively (Acceptable CVI: > 0.78 and CVR: > 0.75). The average variances extracted (AVE) from physical and psychological dimensions were 0.520 and 0.462, respectively, exceeding the minimum criterion of 0.40. Cronbach's alpha for physical and psychological dimensions equaled 0.868 and 0.866, respectively, indicating the adequate internal consistency of multiple items for each construct. The subscales' R square and path coefficient were greater than the recommended threshold as 0.75 (physical dimension: 0.778, psychological dimension: 0.873), demonstrating the suitability of this criterion. Finally, the GoF value of 0.29 indicated the model's moderate fit. CONCLUSIONS: The findings revealed that the Persian version of AcroQoL is of adequate validity and reliability for evaluating the quality of life of Iranian people with acromegaly.
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Acromegalia , Qualidade de Vida , Acromegalia/psicologia , Estudos Transversais , Humanos , Irã (Geográfico) , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To assess the impact of virtual education programming for patients with acromegaly. DESIGN: We conducted a mixed methods study to evaluate patient attitudes, examine if patient-centered educational forums change these attitudes, and determine the role of virtual education as a means to learn about patients' unmet needs, self-reported outcomes, and educational priorities. METHODS: The study included 653 total virtual program registrants. Of these, 78 patients with acromegaly were included in the analysis. The programs consisted of patient-centered livestream education by a multidisciplinary team of pituitary experts and patient presenters. Multiple-choice questions were used to assess attitudes before and after the event, and short answer surveys were used to collect care goals and unmet needs related to treatment. RESULTS: Attendance included participants from 37 countries. The number of patients who responded that they had no hope for improvement, had no choice in their treatment, and felt alone living with acromegaly each decreased significantly pre- to post-event (P < 0.05). The number of patients who felt anxious about their acromegaly diagnosis remained unchanged. 'Quality of life/mental health' was the most common personal care goals concern followed by 'medical therapies/tumor control.' Perceived acromegaly unmet needs were evenly distributed, with five of six categories reported by over 20% of patients. CONCLUSION: Our findings indicate that virtual education may have a significant positive effect on acromegaly patients' perceptions of their disease. The lessons learned from these virtual programs may be used to inform future virtual education programming for acromegaly and other rare diseases.
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Acromegalia , Educação de Pacientes como Assunto/métodos , Projetos Piloto , Interface Usuário-Computador , Acromegalia/psicologia , Acromegalia/terapia , Humanos , Saúde Mental , Qualidade de Vida , Autorrelato , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Patients with acromegaly have substantially reduced quality of life (QoL). This study evaluated QoL in patients with acromegaly treated with lanreotide autogel. MATERIAL AND METHODS: This was a prospective, non-interventional, observational, multi-centre study conducted in Poland (NCT02396966). We included patients with acromegaly, who received treatment with lanreotide autogel 120mg for ≥ 3 months and < 3 years. Patients were assessed approximately every 4-5months for twoyears (six visits). QoL was measured with the Acromegaly Quality of Life Questionnaire (AcroQoL). RESULTS: Of 152 patients enrolled from November 2014 to May 2018 in 37 centres, 24 were excluded due to major protocol deviations. The results are reported for the study population (n = 128). At baseline, the median [95% confidence interval (CI)] time from diagnosis was 3.3 (2.8, 4.2)years, and the median time since lanreotide initiation was 13.4 (9.9, 17.3) months. Symptoms of acromegaly were present at baseline in 86% of patients (headache, 57%; sweating, 58%; joint symptoms, 64%); symptoms remained unchanged at two years in 82% of patients. At baseline, 27% of patients had hormonal control (growth hormone < 2.5 µg/L and insulin-like growth factor-1 within the normal range); hormonal control status did not change during the study period in over 81% of patients. At baseline, 88% of patients were either very satisfied or satisfied with treatment; treatment satisfaction was unchanged in 62% of patients over the study period. Mean (95% CI) AcroQoL scores at baseline were as follows: total, 50.3 (47.3, 53.3); physical dimension, 48.8 (45.2, 52.4); psychological dimension, 51.3 (48.2, 54.4); appearance subdimension, 40.7 (37.5, 43.8); and personal relations subdimension, 62.5 (58.8, 66.2). The psychological appearance subscore improved by 3.8 points (1.2, 6.5) over the two years; scores in the remaining dimensions and subdimensions did not change substantially. The total AcroQoL score remained unchanged over the twoyears, regardless of prior acromegaly treatment, surgery or radiotherapy, hormonal control, or lanreotide dosing interval. No new safety findings were identified. CONCLUSIONS: AcroQoL total scores and physical and psychological subscores remained stable but impaired among patients with long-lasting acromegaly treated with lanreotide autogel for two years. The psychological appearance subdimension improved numerically.
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Acromegalia/tratamento farmacológico , Peptídeos Cíclicos/uso terapêutico , Qualidade de Vida , Somatostatina/análogos & derivados , Acromegalia/psicologia , Adulto , Idoso , Feminino , Hormônios/uso terapêutico , Humanos , Fator de Crescimento Insulin-Like I/análise , Masculino , Pessoa de Meia-Idade , Peptídeos Cíclicos/sangue , Estudos Prospectivos , Somatostatina/uso terapêuticoRESUMO
OBJECTIVE: A relative can be an asset in dealing with chronic illnesses, such as acromegaly, where quality of life (QoL) is altered even after remission. However, it has been shown that quality of life of caregivers can also be impacted. Our main objective was to compare the perception of acromegaly in remission in the patient-relative dyad. METHODS: In this observational study, 27 patients in remission and relatives were first asked to complete QoL, anxiety/depression and coping strategy questionnaires. Then, the patient's body image and self-esteem were evaluated from both the patient's and the relative's point of view using the same questionnaires with modified instructions. RESULTS: Relatives had overall an accurate estimation of patient body image using the Figure Rating Scale by Stunkard. However, there were wide variations between the patient's and the relative's responses regarding self-esteem and body perception. The QoL of relatives was not altered and was significantly higher in the social domain than for the patient. CONCLUSIONS: Our results show that relatives require education concerning all the steps involved in the management of acromegaly, as they likely do not fully understand the sequelae of acromegaly.
Assuntos
Acromegalia/psicologia , Imagem Corporal/psicologia , Cuidadores/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Acromegalia/diagnóstico , Acromegalia/terapia , Adaptação Psicológica/fisiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Autoimagem , Adulto JovemRESUMO
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.
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Acromegalia/terapia , Efeitos Psicossociais da Doença , Grupos Focais/métodos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Qualidade de Vida , Acromegalia/economia , Acromegalia/patologia , Acromegalia/psicologia , Adulto , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Autonomia Pessoal , PrognósticoRESUMO
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.
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Acromegalia/psicologia , Ansiedade/psicologia , COVID-19/psicologia , Hipersecreção Hipofisária de ACTH/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Acromegalia/diagnóstico , Acromegalia/epidemiologia , Adulto , Ansiedade/diagnóstico , Ansiedade/epidemiologia , COVID-19/diagnóstico , COVID-19/epidemiologia , Estudos de Casos e Controles , Estudos Transversais , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Hipersecreção Hipofisária de ACTH/diagnóstico , Hipersecreção Hipofisária de ACTH/epidemiologia , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Turquia/epidemiologiaRESUMO
CONTEXT: Quality of life (QoL) continues to be impaired in acromegaly after treatment. OBJECTIVE: We conducted the first nationwide survey assessing QoL status among Chinese patients with treated acromegaly and explored correlations with clinical parameters, treatment modalities, and outcomes. DESIGN: Cross-sectional study. SETTING: Survey via Chinese Association of Patients with Acromegaly (CAPA) online platform. PATIENTS: Treated patients from CAPA. MAIN OUTCOME MEASURES: QoL was assessed using acromegaly QoL questionnaire (AcroQoL), 5-level EuroQoL five-dimensional questionnaire (EQ-5D-5L), and 12-item short-form health survey questionnaire (SF-12). RESULTS: Complete, valid questionnaires from 327 patients (mean age: 39.2 years, 61.5% females) at a mean of 10 years after treatment were included. Biochemical control was satisfied in 52.9% of these patients. The controlled patients had significantly better QoL than the uncontrolled patients in all AcroQoL dimensions, most SF-12 dimensions, and pain/discomfort and anxiety/depression dimensions of the EQ-5D-5L. Patients with either controlled or uncontrolled acromegaly had significantly worse QoL than the age- and sex-adjusted population reference in most SF-12 dimensions except for physical functioning. More acromegaly-associated symptoms and comorbidities at follow-up were independent risk factors for decreased QoL across all questionnaires. Medical treatment, especially with somatostatin analogs (SSAs), and radiotherapy were predictors of worse QoL. Female patients had lower scores of physical-related QoL than male patients. CONCLUSIONS: Our study suggests that biochemical control improved but did not normalize QoL in acromegaly. Numbers of symptoms and comorbidities at follow-up, sex, radiotherapy, and medical treatment with SSAs were factors determining QoL of patients with treated acromegaly.
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Acromegalia/epidemiologia , Acromegalia/terapia , Qualidade de Vida , Acromegalia/psicologia , Adulto , China/epidemiologia , Comorbidade , Estudos Transversais , Fatores Epidemiológicos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Resultado do TratamentoRESUMO
BACKGROUND: Whereas biochemical response is often used as a primary study outcome, improvement in symptoms and health-related quality of life (HRQoL) is the relevant goal for patients to consider treatment successful. We performed a systematic review and meta-analysis to assess the effect of treatment on symptoms and HRQoL in acromegaly. METHODS: Seven electronic databases were searched for longitudinal studies assessing patient-reported symptoms or HRQoL in acromegaly. Meta-analyses were performed to assess differences during treatment for the Acromegaly Quality of Life Questionnaire (AcroQoL) and Patient-Assessed Acromegaly Symptom Questionnaire (PASQ), and standardized mean difference (SMD) for individual symptoms (interpretation: 0.2 small, 0.5 moderate, and 0.8 large effect). Treatment-naive and previously treated patients were assessed separately. RESULTS: Forty-six studies with 3301 patients were included; 24 contributed to quantitative analyses. Thirty-six studies used medication as main treatment, 1 transsphenoidal adenomectomy, and 9 various treatments. Symptoms and HRQoL both improved: AcroQoL increased 2.9 points (95% CI, 0.5 to 5.3 points), PASQ decreased -2.3 points (95% CI, -1.3 to -3.3 points), and individual symptom scores decreased for paresthesia -0.9 (95% CI, -0.6 to -1.2), hyperhidrosis -0.4 (95% CI, -0.1 to -0.6), fatigue -0.3 (95% CI, -0.1 to -0.6), arthralgia -0.3 (95% CI, -0.1 to -0.5), headache -0.3 (95% CI, 0.0 to -0.6), and soft-tissue swelling -0.2 (95% CI, 0.0 to -0.4). CONCLUSION: Symptoms and HRQoL improved during acromegaly treatment. Consensus is needed on which symptoms should be included in a potential core outcome set, taking into account symptom frequency, severity, and sensitivity to change, which can be used in clinical practice and as outcome in trials.
Assuntos
Acromegalia/psicologia , Acromegalia/terapia , Nível de Saúde , Qualidade de Vida , Humanos , PrognósticoRESUMO
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.
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Acromegalia/psicologia , Hipopituitarismo/psicologia , Avaliação de Resultados da Assistência ao Paciente , Hipersecreção Hipofisária de ACTH/psicologia , Qualidade de Vida/psicologia , Acromegalia/diagnóstico , Acromegalia/terapia , Humanos , Hipopituitarismo/diagnóstico , Hipopituitarismo/terapia , Hipersecreção Hipofisária de ACTH/diagnóstico , Hipersecreção Hipofisária de ACTH/terapiaRESUMO
OBJECTIVE: Acromegaly has a negative influence on health-related quality of life (HRQoL). Previous studies provide limited information on the course of HRQoL during treatment. This study aims to assess the effect of treatment on the course of HRQoL at six predefined time points. DESIGN: This prospective study examines HRQoL in treatment-naive patients before and during the first 2.5 years of acromegaly treatment. METHODS: Therapy-naive acromegaly patients completed three validated questionnaires (RAND-36, AcroQoL, and the Appearance Self-Esteem (ASE)) at six predetermined time points before, during, and after treatment. Outcomes were correlated to IGF1 levels and disease control status. RESULTS: Twenty-seven acromegaly patients completed the questionnaires at all time points. After treatment, all patients had controlled acromegaly. Scores of RAND-36 domains General health, Vitality and Health change, and all AcroQoL dimensions (except for Relations) improved during treatment (P ≤ 0.003); the largest changes were detected during the first year. Gender influenced HRQoL scores, since AcroQoL scores significantly improved in males but not in females. Over time, IGF1 levels were negatively correlated with HRQoL. After 2.5 years of follow-up, HRQoL of controlled patients was still lower than in the general population. CONCLUSION: HRQoL of acromegaly patients was considerably reduced at diagnosis. Disease control was associated with an improvement of HRQoL scores. Males showed a more pronounced improvement than females. The largest changes were detected in the first year of treatment. However, HRQoL during and after treatment remained impaired in acromegaly patients, emphasizing the need of additional support.
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Acromegalia/psicologia , Acromegalia/terapia , Qualidade de Vida/psicologia , Adulto , Idoso , Feminino , Nível de Saúde , Hormônios/deficiência , Hormônio do Crescimento Humano/sangue , Humanos , Fator de Crescimento Insulin-Like I/análise , Masculino , Pessoa de Meia-Idade , Complicações Pós-Operatórias/psicologia , Estudos Prospectivos , Autoimagem , Fatores Sexuais , Inquéritos e Questionários , Resultado do Tratamento , Adulto JovemRESUMO
Pituitary diseases are rare conditions with severe chronic multiorgan and multisystemic morbidity requiring complex multidisciplinary treatment and usually life-long drug treatment. Most cases are caused by functioning or non-functioning pituitary adenoma. From the patient's perspective, the burden of disease is caused by the tumour itself and associated compression symptoms, interventions, hormone excess and deficiencies, systemic manifestations of these endocrine abnormalities and general psychosocial issues that can manifest in patients with a chronic condition. In this review, patient burden is classified according to classic endocrine syndromes, with burden at diagnosis and after long-term remission, and also within the framework of value-based health care and the conceptual model of wellbeing. The recently developed patient-reported outcome measurement tool that helps to evaluate burden of patients is also discussed.
Assuntos
Adenoma , Efeitos Psicossociais da Doença , Neoplasias Hipofisárias , Acromegalia/epidemiologia , Acromegalia/etiologia , Acromegalia/psicologia , Acromegalia/terapia , Adenoma/diagnóstico , Adenoma/epidemiologia , Adenoma/psicologia , Adenoma/terapia , Humanos , Neoplasias Hipofisárias/diagnóstico , Neoplasias Hipofisárias/epidemiologia , Neoplasias Hipofisárias/psicologia , Neoplasias Hipofisárias/terapia , Qualidade de VidaRESUMO
OBJECTIVE: Although the focus of acromegaly treatment is the hormonal control of the disease, a new perspective must be given to the functional rehabilitation of these patients, especially when considering the recent increase in survival. The aim of this study was to evaluate the effects of therapist-oriented home rehabilitation (TOHR) on patients with acromegaly. PATIENTS AND METHODS: Seventeen adults with acromegaly followed an exercise programme from a booklet with instructions for each exercise prescribed, for 2 months, and were reassessed after 1 month of washout. At each of the 3 timepoints (before and after the intervention and at the 1-month follow-up), the participants were subjected to the following assessments: body composition through bioimpedance, health-related quality of life (HRQoL) using the Acromegaly Quality of Life (AcroQoL) questionnaire, general fatigue through the Functional Assessment of Chronic Illness Therapy-Fatigue scale, handgrip strength, lower extremity functionality using isometric dynamometry and the Lower Extremity Functional Scale (LEFS), body balance through stabilometry, and functional capacity through 6-minute walking distance (6MWD). RESULTS: After performing TOHR, improvements in general fatigue, quadriceps muscle strength, LEFS, 6MWD, balance control and all AcroQoL dimensions were observed (all P < 0.05). After 1 month of washout, however, these gains were lost for all parameters, except the LEFS and balance control. CONCLUSIONS: In acromegaly, TOHR results in improvements in muscle function, functional capacity, general fatigue, body balance, and HRQoL. Large randomized controlled trials are needed to replicate these benefits and to recommend rehabilitation, especially for those with long-term illness.
Assuntos
Acromegalia/fisiopatologia , Exercício Físico/psicologia , Qualidade de Vida/psicologia , Acromegalia/psicologia , Terapia por Exercício , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Força Muscular/fisiologia , Inquéritos e Questionários , Resultado do TratamentoRESUMO
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.
Assuntos
Acromegalia/psicologia , Qualidade de Vida , Acromegalia/sangue , Acromegalia/complicações , Adulto , Transtornos Cerebrovasculares/epidemiologia , Transtornos Cerebrovasculares/etiologia , Comorbidade , Diabetes Mellitus/epidemiologia , Feminino , Hormônios/uso terapêutico , Humanos , Fator de Crescimento Insulin-Like I/análise , Masculino , Pessoa de Meia-Idade , Sistema de Registros , Somatostatina/análogos & derivados , Inquéritos e Questionários , Taiwan/epidemiologiaRESUMO
Context Acromegaly has a substantial diagnostic delay associated with an increased risk of comorbidities and psychosocial deterioration. Qualitative methods which focus on the ways that individuals understand and relate to what they are experiencing are the best methods for exploring patients' perspectives. To the best of our knowledge, they have not been developed in the context of acromegaly. Objectives This study aimed to explore the experience of the diagnostic pathway of patients with acromegaly. Design We conducted a qualitative study, based on 20 face-to-face unstructured interviews in a third referral Endocrinology center. Participants, purposively selected until data saturation, were patients with acromegaly with diverse disease durations, types of treatment or associated comorbidities. The data were examined by thematic analysis. Results Our analysis found four themes: (i) what happened for patients before the diagnosis; (ii) what happened after; (iii) the style or type of doctor involved and (iv) patients' suggestions for limiting diagnostic delay. Our findings underlined the direct associations between diagnostic delay and the doctor-patient encounter, and the truly catastrophic experience of this disease, both before and after the diagnosis. Conclusions Diagnosis of acromegaly requires active medical involvement and awareness. Intervention of patient-experts in medical schools may help to be more aware of this disease. Endocrinologists caring for patients with acromegaly should also address the catastrophic dimension of the patient's experience and initiate the narrative to help them to put it into words for preventing harmful consequences such as social isolation and QoL impairment, but also anxiety or depression.
Assuntos
Acromegalia/diagnóstico , Acromegalia/psicologia , Diagnóstico Tardio/psicologia , Satisfação do Paciente , Pesquisa Qualitativa , Inquéritos e Questionários , Acromegalia/sangue , Adulto , Idoso , Feminino , Hormônio do Crescimento Humano/sangue , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Acromegaly can impair quality of life, but impact on patients' daily life, needs and expectations have been poorly explored. OBJECTIVES: To better understand the impact of acromegaly on patients' daily life, and evaluate their needs and expectations. PATIENTS AND METHODS: An on-line questionnaire survey of acromegaly patient and relative community members was conducted on the Carenity website. RESULTS: Twenty-five patients and 3 relatives, with a mean age of 48.9 years, responded. Diagnosis of acromegaly was recent (60% within 10 years). Signs at diagnosis were mainly clinical (fatigue, headache) and physical changes (acral enlargement). Reported complications comprised morphological changes (93%), bone and joint symptoms (75%) and metabolic disorders (75%). Pain and fatigue impacted the daily life of 61% and 54% patients, respectively. Acromegaly had strong impact on mood (79%), leisure (75%) and social life (71%). Patients mostly got information from specialized websites (71%), their endocrinologist (61%) and patient associations (54%). The information sought was patient testimony (82%), practical advice (64%), and information on clinical trials (61%) and treatments (50%). Patients wished to have patient-physician discussion groups (25%), and better knowledge of acromegaly on the part of those they were in contact with (25%). CONCLUSION: Acromegaly has a major impact on patients' daily life and mood. Patients wished their disease to be better known, and advocated setting up discussion groups. This study should encourage acromegaly education programs to adapt the services and information that are needed by acromegalic patients.
Assuntos
Acromegalia/epidemiologia , Acromegalia/psicologia , Atividades Cotidianas , Motivação , Qualidade de Vida , Acromegalia/patologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Feminino , França/epidemiologia , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Motivação/fisiologia , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: Although reports regarding the relationship between surgical complications and quality of life (QOL) exist, a general consensus regarding this issue is lacking. The aim of this study was to evaluate QOL after endoscopic transsphenoidal approach. METHODS: We assessed patients with sellar or parasellar lesions that were removed with endoscopic transsphenoidal approach or extended endoscopic transsphenoidal approach between January 2010 and December 2016. 36-Item Short Form Health Survey and 30-Item General Health Questionnaire QOL scores were obtained preoperatively and 1 month and 6 months postoperatively. RESULTS: We analyzed 89 patients with nonfunctioning pituitary adenoma (NFPA) and 39 patients with acromegaly. Physical QOL decreased 1 month after surgery but recovered after 6 months in both groups. Mental QOL improved postoperatively compared with preoperatively. Patients with acromegaly had a worse Physical Component Summary (PCS) on 36-Item Short Form Health Survey (48.7, 28.9, and 41.0) at 6 months than patients with NFPA. The low preoperative PCS group did not improve until 6 months postoperatively. Multiple regression analysis revealed the following factors were key to postoperative QOL: age (NFPA PCS 6 months postoperatively; correlation coefficient = -0.489), preoperative Mental Component Summary (MCS) (NFPA MCS 6 months postoperatively, correlation coefficient = 0.573), body mass index (acromegaly PCS 6 months postoperatively; correlation coefficient = -0.376), preoperative PCS (acromegaly PCS 6 months postoperatively; correlation coefficient = 0.905), and preoperative MCS (acromegaly MCS 6 months postoperatively; correlation coefficient = 0.726). CONCLUSIONS: Endoscopic transsphenoidal approach can improve QOL in patients by 6 months postoperatively. In patients with acromegaly with significant QOL impairments preoperatively, surgery sometimes may be unable to normalize QOL.