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

Abstract:

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.

journal_name

Pituitary

journal_title

Pituitary

authors

Andela CD,Niemeijer ND,Scharloo M,Tiemensma J,Kanagasabapathy S,Pereira AM,Kamminga NG,Kaptein AA,Biermasz NR

doi

10.1007/s11102-014-0561-1

subject

Has Abstract

pub_date

2015-02-01 00:00:00

pages

86-100

issue

1

eissn

1386-341X

issn

1573-7403

journal_volume

18

pub_type

杂志文章
  • Acromegaly as a cause of 1,25-dihydroxyvitamin D-dependent hypercalcemia: case reports and review of the literature.

    abstract::Growth hormone excess has been associated with hypercalciuria and nephrolithiasis. Hypercalcemia in acromegaly is rare and usually due to coexistent primary hyperparathyroidism. To report two cases of 1,25-dihydroxyvitamin D (1,25 (OH)(2) D)-dependent hypercalcemia in cromegaly. A 50 year-old female with 2 years histo...

    journal_title:Pituitary

    pub_type: 杂志文章,评审

    doi:10.1007/s11102-010-0286-8

    authors: Shah R,Licata A,Oyesiku NM,Ioachimescu AG

    更新日期:2012-12-01 00:00:00

  • Combined treatment of invasive giant prolactinomas.

    abstract::The management of invasive giant prolactinomas (IGP) has been an area of some controversy. The relative roles of transsphenoidal surgery, craniotomy, radiation therapy and dopamine agonist based medical therapy are gradually becoming clarified. We report the results of management of 30 patients with IGP. Surgery was t...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-005-5087-0

    authors: Yu C,Wu Z,Gong J

    更新日期:2005-01-01 00:00:00

  • Hematologic neoplasias and acromegaly.

    abstract::We report a 59-year-old acromegalic woman, who presented with generalized bone pain, weakness, fatigue and foamy urine, who was found to have multiple myeloma (MM); and a 60-year-old acromegalic woman with dizziness, vomiting and abdominal pain, high blood pressure and splenomegaly that was posteriorly diagnosed as ha...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-009-0176-0

    authors: Barbosa FR,Vieira Neto L,Lima GA,Wildemberg LE,Portugal R,Gadelha MR

    更新日期:2011-12-01 00:00:00

  • Sella turcica: an anatomical, endocrinological, and historical perspective.

    abstract:INTRODUCTION:The sphenoid bone has a superior depression called the sella turcica, Latin for "Turkish saddle," where the pituitary gland is found. The availability of modern radiological imaging techniques has replaced plain radiography of the sella turcica in the investigation of hypothalamo-pituitary abnormalities. H...

    journal_title:Pituitary

    pub_type: 历史文章,杂志文章,评审

    doi:10.1007/s11102-014-0609-2

    authors: Tekiner H,Acer N,Kelestimur F

    更新日期:2015-08-01 00:00:00

  • Gamma knife stereotactic radiosurgery for drug resistant or intolerant invasive prolactinomas.

    abstract::We evaluated the efficacy of Gamma knife stereotactic radiosurgery (GKSR) as an adjunctive management modality for patients with drug resistant or intolerant cavernous sinus invasive prolactinomas. Twenty-two patients with cavernous sinus invasive prolactinoma underwent GKSR between 1994 and 2009. Thirteen patients we...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-012-0376-x

    authors: Liu X,Kano H,Kondziolka D,Park KJ,Iyer A,Shin S,Niranjan A,Flickinger JC,Lunsford LD

    更新日期:2013-03-01 00:00:00

  • Autoimmune lymphocytic hypophysitis in association with autoimmune eye disease and sequential treatment with infliximab and rituximab.

    abstract:INTRODUCTION:Autoimmune lymphocytic hypophysitis associates predominantly with other autoimmune endocrinopathies and is most commonly treated with glucocorticoids and/or decompressive pituitary surgery. Here we report a new association and treatment modality for lymphocytic hypophysitis. METHODS:A 52-year-old woman pr...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-014-0592-7

    authors: Xu C,Ricciuti A,Caturegli P,Keene CD,Kargi AY

    更新日期:2015-08-01 00:00:00

  • Insulin sensitivity and lipid profile in prolactinoma patients before and after normalization of prolactin by dopamine agonist therapy.

    abstract::Hyperprolactinemia has been associated with impaired metabolism, including insulin resistance. However, the metabolic effects of elevated prolactin (PRL) levels are not completely clarified. The aim of this study was to obtain more insights of metabolic consequences in hyperprolactinemia patients. Fourteen consecutive...

    journal_title:Pituitary

    pub_type: 临床试验,杂志文章

    doi:10.1007/s11102-010-0277-9

    authors: Berinder K,Nyström T,Höybye C,Hall K,Hulting AL

    更新日期:2011-09-01 00:00:00

  • A prospective longitudinal study of Pasireotide in Nelson's syndrome.

    abstract:PURPOSE:Nelson's syndrome is a challenging condition that can develop following bilateral adrenalectomy for Cushing's disease, with high circulating ACTH levels, pigmentation and an invasive pituitary tumor. There is no established medical therapy. The aim of the study was to assess the effects of pasireotide on plasma...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-017-0853-3

    authors: Daniel E,Debono M,Caunt S,Girio-Fragkoulakis C,Walters SJ,Akker SA,Grossman AB,Trainer PJ,Newell-Price J

    更新日期:2018-06-01 00:00:00

  • Oral estroprogestin: an alternative low cost therapy for women with postoperative persistent acromegaly?

    abstract::Oral estrogens reduce GH-induced IGF-1 production and preliminary studies have shown that adjuvant estroprogestin (EP) therapy with octreotide LAR may control disease activity in some female patients who are partially responsive to octreotide LAR. Our aim was to verify if EP alone or in combination with octreotide LAR...

    journal_title:Pituitary

    pub_type: 临床试验,杂志文章

    doi:10.1007/s11102-010-0236-5

    authors: Vallette S,Serri O

    更新日期:2010-12-01 00:00:00

  • Molecular pathogenesis of human prolactinomas identified by gene expression profiling, RT-qPCR, and proteomic analyses.

    abstract::The molecular pathogenesis of prolactinomas has resisted elucidation; with the exception of a RAS mutation in a single aggressive prolactinoma, no mutational changes have been identified. In prolactinomas, a further obstacle has been the paucity of surgical specimens suitable for molecular analysis since prolactionoma...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-007-0082-2

    authors: Evans CO,Moreno CS,Zhan X,McCabe MT,Vertino PM,Desiderio DM,Oyesiku NM

    更新日期:2008-01-01 00:00:00

  • Primary central nervous system lymphoma mimicking pituitary apoplexy: case report.

    abstract::Lymphoma involving the pituitary gland is very rare and usually results from metastatic spread of systemic lymphoma. We present a case of primary central nervous system (CNS) large B cell lymphoma that manifested as pituitary apoplexy. A 45-year-old woman presented with headache, and then rapidly developed a third ner...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-008-0084-8

    authors: Quintero Wolfe S,Hood B,Barker J,Benveniste RJ

    更新日期:2009-01-01 00:00:00

  • Dopamine resistance of prolactinomas.

    abstract::Resistance to dopamine agonists can be defined with respect to failure to normalize PRL levels and failure to decrease tumor size by > or = 50%. Using these definitions, failure to normalize PRL levels is seen in 24% of those treated with bromocriptine, 13% of those treated with pergolide and 11% of those treated with...

    journal_title:Pituitary

    pub_type: 杂志文章,评审

    doi:10.1023/a:1026225625897

    authors: Molitch ME

    更新日期:2003-01-01 00:00:00

  • Phospho-histone H3 (pHH3) immuno-reactivity as a prognostic marker in non-functioning pituitary adenomas.

    abstract::Nonfunctioning pituitary adenomas (NFPA) are typically benign neoplasms that can cause significant morbidity through local mass effects. MIB-1/Ki-67 and p53 immuno-reactivity are used to predict aggressive behavior but have known limitations. No marker to date is widely used to reliably predict tumor progression. Phos...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-011-0367-3

    authors: Hightower E,Cabanillas ME,Fuller GN,McCutcheon IE,Hess KR,Shah K,Waguespack SG,Corley LJ,Devin JK

    更新日期:2012-12-01 00:00:00

  • Medical combination therapies in Cushing's disease.

    abstract:INTRODUCTION:There has been growing interest on medical therapy for the management of Cushing's disease (CD), particularly in cases of persistent or recurrent hypercortisolism. Ketoconazole, an inhibitor of adrenal steroidogenesis, is the most widely used drug, whereas cabergoline and pasireotide are the most promising...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-015-0641-x

    authors: Vilar L,Naves LA,Machado MC,Bronstein MD

    更新日期:2015-04-01 00:00:00

  • Remission rate after transsphenoidal surgery in patients with pathologically confirmed Cushing's disease, the role of cortisol, ACTH assessment and immediate reoperation: a large single center experience.

    abstract::Postoperative serum cortisol is used as an indicator of Cushing's disease (CD) remission following transsphenoidal surgery (TSS) and guides (controversially) the need for immediate adjuvant treatment for CD. We investigated postoperative cortisol and adrenocorticotropic hormone (ACTH) levels as predictors of remission...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-012-0455-z

    authors: Hameed N,Yedinak CG,Brzana J,Gultekin SH,Coppa ND,Dogan A,Delashaw JB,Fleseriu M

    更新日期:2013-12-01 00:00:00

  • Inferior petrosal sinus ACTH and prolactin responses to CRH in ACTH-dependent Cushing's syndrome: a single centre experience from the United Kingdom.

    abstract::Inferior petrosal sinus sampling (IPSS) of ACTH with CRH stimulation helps distinguish pituitary ACTH-dependent Cushing's syndrome from the ectopic ACTH syndrome (EAS). The usefulness of the paradoxical response of other pituitary hormones including prolactin to CRH remains controversial. Data from 33 IPSS procedures ...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-009-0200-4

    authors: Daousi C,Nixon T,Javadpour M,Hayden K,MacFarlane IA

    更新日期:2010-06-01 00:00:00

  • Screening for Cushing's syndrome: is it worthwhile?

    abstract:INTRODUCTION:Cushing's syndrome (CS) is a rare disease characterized by a collection of signs and symptoms, also common in the general population without elevated cortisol secretion. During the last years more patients with CS are identified earlier and with milder disease. Many of these patients are diagnosed during s...

    journal_title:Pituitary

    pub_type: 杂志文章,评审

    doi:10.1007/s11102-015-0634-9

    authors: Shimon I

    更新日期:2015-04-01 00:00:00

  • Clinical and biochemical stabilization of Nelson's syndrome with long-term low-dose cabergoline treatment.

    abstract::We report the results of long-term (6-year) treatment of Nelson's syndrome with the long-acting dopamine agonist, cabergoline, in a 55-year-old woman. The disease presented 26 years after bilateral adrenalectomy and radiation treatment for Cushing's disease, followed by glucocorticoid and mineralocorticoid replacement...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-006-9290-4

    authors: Shraga-Slutzky I,Shimon I,Weinshtein R

    更新日期:2006-01-01 00:00:00

  • Prognostic value of nadir GH levels for long-term biochemical remission or recurrence in surgically treated acromegaly.

    abstract:CONTEXT:Outcome of acromegaly surgery is assessed by IGF-1 and glucose-suppressed GH, but whether the latter provides additional clinically relevant information when IGF-1 is normal is unclear. The role of GH suppression testing after surgery requires clarification. METHODS:We studied 97 acromegaly patients with norma...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-020-01094-4

    authors: Freda PU,Bruce JN,Reyes-Vidal C,Singh S,DeLeon Y,Jin Z,Khandji AG,Cremers S,Post KD

    更新日期:2020-10-30 00:00:00

  • The trans-sphenoidal resection of pituitary adenomas in elderly patients and surgical risk.

    abstract::In western countries, the process of "ageing of the population" is increasingly forcing clinical medicine to find answers for pathologies affecting the elder segments of our community. In this respect, pituitary adenomas often raise difficult questions on surgical indications, since little is known about postoperative...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-012-0390-z

    authors: Locatelli M,Bertani G,Carrabba G,Rampini P,Zavanone M,Caroli M,Sala E,Ferrante E,Gaini SM,Spada A,Mantovani G,Lania A

    更新日期:2013-06-01 00:00:00

  • Osilodrostat, a potent oral 11β-hydroxylase inhibitor: 22-week, prospective, Phase II study in Cushing's disease.

    abstract:PURPOSE:In a 10-week proof-of-concept study (LINC 1), the potent oral 11β-hydroxylase inhibitor osilodrostat (LCI699) normalized urinary free cortisol (UFC) in 11/12 patients with Cushing's disease. The current 22-week study (LINC 2; NCT01331239) further evaluated osilodrostat in patients with Cushing's disease. METHO...

    journal_title:Pituitary

    pub_type: 杂志文章,多中心研究

    doi:10.1007/s11102-015-0692-z

    authors: Fleseriu M,Pivonello R,Young J,Hamrahian AH,Molitch ME,Shimizu C,Tanaka T,Shimatsu A,White T,Hilliard A,Tian C,Sauter N,Biller BM,Bertagna X

    更新日期:2016-04-01 00:00:00

  • Proliferation markers in different types of clinically non-secreting pituitary adenomas.

    abstract::160 clinically non-secreting pituitary adenomas were examined in regard to their expression of the markers PCNA, bcl2, Ki 67 in the mib-1 modification and p53 which are still under investigation for their relevance to cell proliferation. The series contained 60 null cell adenomas, 60 oncocytomas and 40 gonadotroph ade...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1023/a:1009933820856

    authors: Schreiber S,Saeger W,Lüdecke DK

    更新日期:1999-05-01 00:00:00

  • Management of aggressive pituitary adenomas: current treatment strategies.

    abstract::Aggressive pituitary adenomas are notoriously difficult to manage due to their size, invasiveness, speed of growth and high frequency of recurrence. Except for prolactinomas, surgery (usually transsphenoidal but sometimes transcranial) is the first-line option, but re-growth of aggressive tumors is almost inevitable a...

    journal_title:Pituitary

    pub_type: 杂志文章,评审

    doi:10.1007/s11102-008-0153-z

    authors: Buchfelder M

    更新日期:2009-01-01 00:00:00

  • The relationship between prolactin (PRL), leptin, nitric oxide (NO), and cytokines in patients with hyperprolactinemia.

    abstract::Leptin is a key mediator in the maintenance of neuroendocrine homeostasis. The aim of this study was to determine the changes in serum leptin, tumor necrosis factor-alpha (TNF-alpha), interleukin-6 (IL-6), nitric oxide (NO) levels in patients with hyperprolactinemia. The study consists of 16 consecutive patients with ...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-008-0140-4

    authors: Balci H,Akgun-Dar K,Gazioglu N,Kapucu A,Bolayirli M,Oz B

    更新日期:2009-01-01 00:00:00

  • Cabergoline decreases somatotroph adenoma size: a case report.

    abstract::Dopamine agonists have been shown to reduce growth hormone secretion in some patients with acromegaly, but their effect on adenoma size has not been well appreciated. We describe a 69 year-old woman with acromegaly caused by a somatotroph macroadenoma who received primary treatment with the dopamine agonist cabergolin...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-005-5353-1

    authors: Rickels MR,Snyder PJ

    更新日期:2004-01-01 00:00:00

  • Hypopituitarism in five PROP1 mutation siblings: long-lasting natural course and the effects of growth hormone replacement introduction in middle adulthood.

    abstract::Twenty years after the first description of combined hypopituitarism (CPHD) caused by PROP1 mutations, the phenotype of affected subjects is still challenging for clinicians. These patients suffer from pituitary hormone deficits ranging from IGHD to panhypopituitarism. ACTH deficiency usually develops later in life. P...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-020-01049-9

    authors: Doknic M,Gasic V,Stojanovic M,Pavlovic S,Marinkovic S,Miljic D,Pekic S,Manojlovic-Gacic E,Damjanovic D,Soldatovic I,Petakov M

    更新日期:2020-08-01 00:00:00

  • An unusual association of a sellar gangliocytoma with a prolactinoma.

    abstract::The simultaneous occurrence of a hypothalamic and sellar gangliocytoma with a pituitary prolactinoma is very rare. The explanation for such an association is not known. We describe the case of a woman who had a coexisting adjacent pituitary prolactinoma and gangliocytoma within the same sellar mass. The tumor cells of...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-007-0022-1

    authors: Serri O,Berthelet F,Bélair M,Vallette S,Asa SL

    更新日期:2008-01-01 00:00:00

  • Medical management of pituitary adenomas: structural and ultrastructural changes.

    abstract::The morphology of the various pituitary cell types is highly dynamic and allows recognition of many cellular functions. Most pituitary cells show morphologic changes that reflect stimulation or inhibition by hormones. Drugs have also been shown to alter the morphology of several pituitary tumor types, allowing a measu...

    journal_title:Pituitary

    pub_type: 杂志文章,评审

    doi:10.1023/a:1022320732718

    authors: Asa SL,Ezzat S

    更新日期:2002-01-01 00:00:00

  • Lymphocytic hypophysitis with associated thyroiditis in a man with aseptic meningitis.

    abstract:OBJECTIVE:Lymphocytic hypophysitis (LH) is a rare chronic inflammatory disorder characterized by lymphocytic infiltration of the pituitary gland commonly affecting women during pregnancy or post-partum period. The pathogenesis remains uncertain, however an autoimmune process is frequently implicated. There is limited d...

    journal_title:Pituitary

    pub_type: 杂志文章

    doi:10.1007/s11102-008-0119-1

    authors: Lim S,Elston MS,Swarbrick MJ,Conaglen JV

    更新日期:2009-01-01 00:00:00

  • Malignant transformation in non-functioning pituitary adenomas (pituitary carcinoma).

    abstract::Non-functioning pituitary carcinomas (NFPC) are defined as tumours of adenophyseal origin with craniospinal or systemic dissemination, with the absence of a hormonal hypersecretion syndrome. These are a histologically heterogenous group of tumours, comprising gonadotroph, null cell, "silent" tumours of corticotroph, s...

    journal_title:Pituitary

    pub_type: 杂志文章,评审

    doi:10.1007/s11102-017-0857-z

    authors: Lenders N,McCormack A

    更新日期:2018-04-01 00:00:00