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2.
Front Endocrinol (Lausanne) ; 15: 1366935, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38894738

RESUMEN

Background: The incidence of thyroid cancer is on the rise worldwide, with childhood exposure to radiation being the sole acknowledged catalyst for its emergence. Nonetheless, numerous other factors that may pose risks are awaiting thorough examination and validation. This retrospective study aims to explore the malignancies linked to thyroid cancer and contrast the survival rates of those afflicted with a solitary tumor versus those with multiple primary neoplasms (MPN). Methods: This retrospective study examined data from King Hussein Cancer Center (KHCC), Jordan. Among 563 patients diagnosed with thyroid cancer, 30 patients had thyroid malignancy as part of MPN. For a 1:3 propensity score-matched analysis, 90 patients with only a primary thyroid malignancy were also enrolled. Results: Hematologic and breast malignancies were among the most frequent observed cancers alongside thyroid neoplasm. Patients who had MPN were diagnosed at older age, had higher body mass index and presented with higher thyroglobulin antibody levels (p < 0.05 for each). Additionally, MPN patient displayed a stronger family history for cancers (p= 0.002). A median follow-up duration of 135 months unveiled that MPN patients faced a worse 5-year survival compared to their counterparts with a singular neoplasm (87% vs 100% respectively; p < 0.01). However, no distinction emerged in the 5-year event-free survival between these two groups. Conclusion: MPN correlates with a significantly altered survival outcome of thyroid cancer patients. The diagnosis of thyroid carcinoma at an older age, accompanied by elevated initial thyroglobulin antibody levels and a notable familial predisposition, may raise concerns about the potential occurrence of synchronous or metachronous tumors.


Asunto(s)
Neoplasias Primarias Múltiples , Puntaje de Propensión , Neoplasias de la Tiroides , Humanos , Neoplasias de la Tiroides/epidemiología , Neoplasias de la Tiroides/mortalidad , Femenino , Masculino , Estudios Retrospectivos , Persona de Mediana Edad , Adulto , Neoplasias Primarias Múltiples/epidemiología , Jordania/epidemiología , Tasa de Supervivencia , Anciano , Estudios de Seguimiento , Pronóstico
3.
Artículo en Inglés | MEDLINE | ID: mdl-38935397

RESUMEN

Importance: Clinicians should understand how patients who were treated with laryngeal cancer surgery think about this later on and what factors may be related with regretting surgery. Objective: To assess variables associated with a positive attitude toward laryngeal cancer surgery. Design, Setting, and Participants: This combination of 2 cohorts, based on patient interviews and questionnaires, was studied in 16 hospitals in Germany. Participants scheduled for laryngeal cancer surgery were enrolled before surgery and followed up until 1 year after surgery. Data collection began on November 28, 2001, and ended on March 15, 2015. Statistical analysis was performed from August 21, 2023, to January 19, 2024. Main Outcomes and Measures: The attitude toward surgery was measured with the Psychosocial Adjustment After Laryngectomy Questionnaire (scores range from 0 to 100, with high scores representing a positive attitude toward the surgery) at 1 year after surgery. In multivariate regression analysis, the following variables were investigated: type of surgery, number of surgeries to the larynx, receipt of radiotherapy and chemotherapy, quality of life, speech intelligibility (objectively measured), age, sex, educational level, employment status, having a partner or not, counseling by patient association, and shared decision-making. Results: Patients (n = 780; mean [SD] age, 60.6 [10.4] years; 701 [90%] male) who had received counseling from the patient association reported a more positive attitude toward surgery (adjusted B = 8.8; 95% CI, 1.0-16.6). Among patients after total laryngectomy, those with a university degree had a less positive attitude toward their surgery (adjusted B = -50.8; 95% CI, -84.0 to -17.6); this result was not observed in patients after partial laryngectomy (adjusted B = -4.8; 95% CI, -15.1 to 5.4). Among patients after partial laryngectomy, the attitude toward surgery was most positive in those who had experienced shared decision-making (mean [SD] questionnaire score, 84 [20] in those without a wish and 83 [20] in those with a wish for shared decision-making). Those who had wished they could decide together with the physician but where this eventually was not experienced expressed the most regret toward surgery (mean [SD] score, 71 [22]). There was no association between attitudes toward surgery and type of surgery (total vs partial laryngectomy) and all other variables tested. Conclusion and Relevance: In this cohort study, most patients with head and neck cancer reported a positive attitude toward surgery, suggesting low levels of decision regret. Counseling by members of patient associations as well as individualized shared decision-making prior to surgery may have a positive impact on decision regret and is advisable in daily practice.

4.
Endocrine ; 2024 Apr 05.
Artículo en Inglés | MEDLINE | ID: mdl-38578400

RESUMEN

PURPOSE: Hypoparathyroidism is defined by hypocalcemia with inappropriately normal or low parathyroid hormone levels. The current standard treatment consists of lifelong calcium and/ or vitamin D supplementation. Even while on stable treatment regimens, hypoparathyroid patients might still suffer from symptoms that can negatively impact their quality of life. METHODS: A systematic literature review to identify the current knowledge regarding quality of life in patients with hypoparathyroidism receiving standard treatment was performed on November 1st, 2023. PubMed as well as Web of Science were searched. The systematic review is registered in PROSPERO (#CRD42023470924). RESULTS: After removal of duplicates, 398 studies remained for title and abstract screening, after which 30 were included for full-text screening. After exclusion of seven studies with five studies lacking a control population, one using a non-validated questionnaire, and one being a subsample of the larger included study, 23 studies were included in this systematic review. The majority of the included studies used a guideline-conform definition of hypoparathyroidism, and the SF-36 was the most often applied tool. Almost all studies (87%) reported statistically significantly lower scores in at least one quality of life domain compared to a norm population or controls. CONCLUSION: Patients with hypoparathyroidism receiving standard treatment report impairments in quality of life. The reasons for these impairments are probably multifaceted, making regular monitoring and the inclusion of various professionals necessary.

5.
JAMA Netw Open ; 7(3): e242375, 2024 Mar 04.
Artículo en Inglés | MEDLINE | ID: mdl-38526495

RESUMEN

Importance: There is a lack of trials examining the effect of counseling interventions for child, adolescent, and younger adult (CAYA) cancer survivors. Objective: To assess lifestyle habits and the psychosocial situation of CAYAs to determine the efficacy of needs-based interventions in the CARE for CAYA program (CFC-P). Design, Setting, and Participants: The CFC-P was conducted as a multicenter program in 14 German outpatient clinics, mainly university cancer centers. Recruitment began January 1, 2018; a randomized clinical trial was conducted until July 15, 2019; and intervention was continued as a longitudinal cohort study until March 31, 2021. Data preparation was conducted from April 1, 2021, and analysis was conducted from August 14, 2021, to May 31, 2022. Herein, predefined confirmatory analyses pertain to the RCT and descriptive results relate to the overall longitudinal study. Data analysis was based on the full analysis set, which is as close as possible to the intention-to-treat principle. Intervention: A comprehensive assessment determined needs in physical activity, nutrition and psychooncology. Those with high needs participated in 1 to 3 modules. In the RCT, the IG received 5 counseling sessions plus newsletters, while the control group CG received 1 counseling session. Main Outcomes and Measures: The primary outcome was the change in the rate of CAYAs with high needs at 52 weeks. Secondary outcomes were feasibility, modular-specific end points, satisfaction, quality of life, and fatigue. Results: Of 1502 approached CAYAs aged 15 to 39 years, 692 declined participation. Another 22 CAYAs were excluded, resulting in 788 participants. In the randomized clinical trial, 359 CAYAs were randomized (intervention group [IG], n = 183; control group [CG], n = 176), and 274 were followed up. In the RCT, the median age was 25.0 (IQR, 19.9-32.2) years; 226 were female (63.0%) and 133 male (37.0%). After 52 weeks, 120 CAYAs (87.0%) in the IG and 115 (86.5%) in the CG still had a high need in at least 1 module (odds ratio, 1.04; 95% CI, 0.51-2.11; P = .91). Both groups reported reduced needs, improved quality of life, reduced fatigue, and high satisfaction with the CFC-P. Conclusions and Relevance: In this randomized clinical trial, the implementation of a lifestyle program in this cohort was deemed necessary, despite not meeting the primary outcome. The interventions did not alter the rate of high needs. The results may provide guidance for the development of multimodal interventions in the follow-up care of CAYAs. Trial Registration: German Clinical Trial Register: DRKS00012504.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adolescente , Adulto , Niño , Femenino , Masculino , Humanos , Estudios Longitudinales , Supervivencia , Calidad de Vida , Estudios de Cohortes , Estilo de Vida , Fatiga , Neoplasias/terapia
6.
Int J Cancer ; 154(10): 1772-1785, 2024 May 15.
Artículo en Inglés | MEDLINE | ID: mdl-38312044

RESUMEN

Head and neck cancer (HNC) patients suffer from a range of health-related quality of life (HRQoL) issues, but little is known about their long-term HRQoL. This study explored associations between treatment group and HRQoL at least 5 years' post-diagnosis in HNC survivors. In an international cross-sectional study, HNC survivors completed the European Organization for Research and Treatment of Cancer (EORTC) quality of life core questionnaire (EORTC-QLQ-C30) and its HNC module (EORTC-QLQ-H&N35). Meaningful HRQoL differences were examined between five treatment groups: (a) surgery, (b) radiotherapy, (c) chemo-radiotherapy, (d) radiotherapy ± chemotherapy and neck dissection and (e) any other surgery (meaning any tumour surgery that is not a neck dissection) and radiotherapy ± chemotherapy. Twenty-six sites in 11 countries enrolled 1105 survivors. They had a median time since diagnosis of 8 years, a mean age of 66 years and 71% were male. After adjusting for age, sex, tumour site and UICC stage, there was evidence for meaningful differences (10 points or more) in HRQoL between treatment groups in seven domains (Fatigue, Mouth Pain, Swallowing, Senses, Opening Mouth, Dry Mouth and Sticky Saliva). Survivors who had single-modality treatment had better or equal HRQoL in every domain compared to survivors with multimodal treatment, with the largest differences for Dry Mouth and Sticky Saliva. For Global Quality of Life, Physical and Social Functioning, Constipation, Dyspnoea and Financial Difficulties, at least some treatment groups had better outcomes compared to a general population. Our data suggest that multimodal treatment is associated with worse HRQoL in the long-term compared to single modality.


Asunto(s)
Neoplasias de Cabeza y Cuello , Xerostomía , Humanos , Masculino , Anciano , Femenino , Calidad de Vida , Estudios Transversales , Sobrevivientes , Encuestas y Cuestionarios
7.
Dtsch Arztebl Int ; 121(4): 121-127, 2024 02 23.
Artículo en Inglés | MEDLINE | ID: mdl-38231700

RESUMEN

BACKGROUND: Men make use of outpatient cancer counseling less commonly than women, even when they stand to benefit from it. METHODS: In a cluster-randomized trial (registered under DRKS00032181), we studied whether measures on multiple levels (information for referring physicians, public information, structural changes, offerings specifically for male patients) over a period of 12 months would be able to increase the percentage of men among patients seeking outpatient cancer counseling (primary endpoint, initial contact; secondary endpoint, all contacts). The intervention effect was quantified by the fitting of generalized linear mixed models to obtain an odds ratio, which was adjusted for cluster structure and for the percentages of first contacts and of all contacts during the 12 months before the start of the intervention. RESULTS: In 12 regions of Germany (6 each in the intervention arm and the control arm), 11 986 people had first contacts with outpatient cancer counseling, 6004 of them during the intervention phase. The percentage accounted for by men was 30.7% in the intervention arm and 25.7% in the control arm, corresponding to a statistically insignificant model-based adjusted odds ratio (OR) of 1.2 (95% confidence interval [1.0; 1.4], p = 0.08) for the primary endpoint. There were a total of 51 842 counseling sessions (both initial contacts and subsequent contacts), 26 651 of them in the intervention phase. The percentage of these that was accounted for by men was 27.6% in the intervention arm and 22.2% in the control arm; the adjusted OR for this secondary endpoint was 1.3 [1.1; 1.6], p = 0.01). CONCLUSION: The targeted implementation of malespecific measures on multiple levels can increase, by a small amount, the percentage of men among persons seeking outpatient cancer counseling.


Asunto(s)
Neoplasias , Pacientes Ambulatorios , Humanos , Masculino , Femenino , Consejo , Alemania/epidemiología , Neoplasias/epidemiología , Neoplasias/terapia
8.
Psychiatr Prax ; 51(1): 31-38, 2024 Jan.
Artículo en Alemán | MEDLINE | ID: mdl-37678409

RESUMEN

OBJECTIVES: Our study investigates how psychotherapists implement and assess the newly introduced elements of the structural reform of the psychotherapy guideline in Germany. METHODS: We asked psychotherapists about their experiences with the structural reform in semi-structured interviews. The data was analysed using qualitative content analysis. RESULTS: A total of 37 h of audio material from 41 psychotherapists were available. The interviews showed that acute treatment and relapse prevention are welcomed by psychotherapists. However, due to lack of appointment capacity as well as conceptual barriers, these are rarely used. Concerning psychotherapeutic assessment consultations, the opinions were heterogeneous. CONCLUSION: Individual aspects of the new care elements are assessed positively. However, these can only be implemented to a limited extent and are not sufficient to significantly improve the strained supply situation.


Asunto(s)
Psicoterapia , Psicotrópicos , Humanos , Alemania , Psicotrópicos/uso terapéutico , Derivación y Consulta
9.
Endocrine ; 84(2): 635-645, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38103143

RESUMEN

PURPOSE: The purpose of this study was to investigate the impact of the type of data capture on the time and help needed for collecting patient-reported outcomes as well as on the proportion of missing scores. METHODS: In a multinational prospective study, thyroid cancer patients from 17 countries completed a validated questionnaire measuring quality of life. Electronic data capture was compared to the paper-based approach using multivariate logistic regression. RESULTS: A total of 437 patients were included, of whom 13% used electronic data capture. The relation between data capture and time needed was modified by the emotional functioning of the patients. Those with clinical impairments in that respect needed more time to complete the questionnaire when they used electronic data capture compared to paper and pencil (ORadj 24.0; p = 0.006). This was not the case when patients had sub-threshold emotional problems (ORadj 1.9; p = 0.48). The odds of having the researcher reading the questions out (instead of the patient doing this themselves) (ORadj 0.1; p = 0.01) and of needing any help (ORadj 0.1; p = 0.01) were lower when electronic data capture was used. The proportion of missing scores was equivalent in both groups (ORadj 0.4, p = 0.42). CONCLUSIONS: The advantages of electronic data capture, such as real-time assessment and fewer data entry errors, may come at the price of more time required for data collection when the patients have mental health problems. As this is not uncommon in thyroid cancer, researchers need to choose the type of data capture wisely for their particular research question.


Asunto(s)
Medición de Resultados Informados por el Paciente , Calidad de Vida , Neoplasias de la Tiroides , Humanos , Neoplasias de la Tiroides/psicología , Femenino , Masculino , Persona de Mediana Edad , Adulto , Anciano , Estudios Prospectivos , Encuestas y Cuestionarios , Recolección de Datos/métodos
10.
Front Endocrinol (Lausanne) ; 14: 1166838, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37711899

RESUMEN

Introduction: Sarcomas are rare cancers and very heterogeneous in their location, histological subtype, and treatment. Health-Related Quality of Life (HRQoL) of sarcoma patients has rarely been investigated in longitudinal studies. Methods: Here, we assessed adult sarcoma patients and survivors between September 2017 and February 2020, and followed-up for one year in 39 study centers in Germany. Follow-up time points were 6 (t1) and 12 months (t2) after inclusion. We used a standardized, validated questionnaire (the European Organisation for Research and Treatment of Cancer Quality of Life Core Instrument (EORTC QLQ-C30) and explored predictors of HRQoL in two populations (all patients (Analysis 1), patients in ongoing complete remission (Analysis 2)) using generalized linear mixed models. Results: In total we included up to 1111 patients at baseline (915 at t1, and 847 at t2), thereof 387 participants were in complete remission at baseline (334 at t1, and 200 at t2). When analyzing all patients, HRQoL differed with regard to tumor locations: patients with sarcoma in lower extremities reported lower HRQoL values than patients with sarcomas in the upper extremities. Treatment which included radiotherapy and/or systemic therapy was associated with lower HRQoL. For patients in complete remission, smoking was associated with worse HRQoL-outcomes. In both analyses, bone sarcomas were associated with the worst HRQoL values. Being female, in the age group 55-<65 years, having lower socioeconomic status, and comorbidities were all associated with a lower HRQoL, in both analyses. Discussion: HRQoL increased partially over time since treatment and with sporting activities. HRQoL improved with time since treatment, although not in all domains, and was associated with lifestyle and socioeconomic factors. Bone sarcomas were the most affected subgroup. Methods to preserve and improve HRQoL should be developed for sarcoma patients.


Asunto(s)
Neoplasias Óseas , Osteosarcoma , Sarcoma , Neoplasias de los Tejidos Blandos , Adulto , Humanos , Femenino , Anciano , Masculino , Calidad de Vida , Sarcoma/terapia , Neoplasias de los Tejidos Blandos/epidemiología , Neoplasias de los Tejidos Blandos/terapia , Neoplasias Óseas/terapia
11.
Radiother Oncol ; 189: 109913, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37739319

RESUMEN

AIM: The sequence of radiotherapy and resection in patients with soft tissue sarcomas is usually discussed on an individual basis. Better understanding of potential differences of health-related quality of life (QoL) between patients undergoing adjuvant (ART) versus neoadjuvant radiotherapy (NART) is therefore helpful for clinical decision making. METHODS: Adult sarcoma patients from 39 hospitals completed the European Organisation for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30). Differences in global QoL, physical functioning, role functioning, fatigue, pain, and insomnia between ART versus NART were investigated with multivariate regression, adjusting for age, gender, chemotherapy, grading, stage, tumor location, recurrence/distant metastasis, sarcoma type, time since last treatment, and treatment status using validated thresholds. RESULTS: A total of 1110 patients participated. Of them, 340 had received radiotherapy (NART: n = 95, 28%; ART: n = 245, 72%). Global QoL was 59.3 on average after NART and 60.5 after ART (Badj = 1.0, p = 0.74). Physical functioning was 65.9 compared to 70.5 (Badj = 4.2; p = 0.16), role function 48.8 vs. 56.7 (Badj = 7.0, p = 0.08), fatigue 47.5 vs. 45.4 (Badj = -1.2; p = 0.71), pain 40.2 vs. 34.1 (Badj = -6.8; p = 0.08), and insomnia 33.7 vs. 41.6 (Badj = 5.5, p = 0.16). Among patients with NART, clinically relevant QoL impairments were less frequent 2 years after treatment compared to < 2 years thereafter (n = 6 vs. n = 4 on average). CONCLUSION: There is little evidence for QoL differences in most domains and overall QoL between the two irradiation groups. However, patients after NART might experience worse role functioning and pain but fewer problems with insomnia compared to patients after ART.


Asunto(s)
Sarcoma , Trastornos del Inicio y del Mantenimiento del Sueño , Adulto , Humanos , Terapia Neoadyuvante/efectos adversos , Dolor/etiología , Calidad de Vida , Radioterapia Adyuvante/efectos adversos , Sarcoma/radioterapia , Trastornos del Inicio y del Mantenimiento del Sueño/etiología , Masculino , Femenino
12.
Front Oncol ; 13: 1222573, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37538111

RESUMEN

Fatigue is a very common side effect during intravenous chemotherapy. Unfortunately, only few effective therapeutic options are available, mostly based on daily activity. In our pilot trial we were able to demonstrate that intermittent fasting can reduce fatigue in healthy people, thus we aimed to assess the effects of the fasting dietary on quality of life during chemotherapy in patients with gynecological cancer, especially on the domain of fatigue. The IFAST trial is designed as a prospective, randomized-controlled, multi-center trial. Participation will be offered to women with gynecological cancers (breast cancer, ovarian cancer including peritoneal and fallopian tube cancers, endometrial cancer and cervical cancer) who are planned to receive intravenous chemotherapy for at least three months. Eligible patients will be randomized 1:1, stratified by tumor type and study center. Primary endpoint is the difference in mean change in fatigue, assessed with the Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT- FS©). Exploratory secondary endpoints will include general Quality of Life impairment, tolerance of chemotherapy, immunological changes, peripheral cell damage in blood cells, as well as tumor response to chemotherapy. There is new evidence that prolonged fasting periods of 46-96 hours during chemotherapy can positively influence the quality of life during chemotherapy. However, these fasting regiments are not feasible for many patients. Intermittent fasting could be a feasible (manageable) option for many patients to actively improve their quality of life and tolerance to chemotherapy and possibly even enhance the effectiveness of chemotherapy. Trial Registration: https://drks.de, identifier DRKS00031429.

13.
Artículo en Alemán | MEDLINE | ID: mdl-37594498

RESUMEN

BACKGROUND: One provision of the Care Provision Strengthening Act in Germany was that psychotherapeutic appointments (psychotherapeutic consultation, acute care, and probatory sessions) are now arranged through the Association of Statutory Health Insurance Physicians organizations. We examined how many appointments were requested and given in 2019, differentiated by appointment type and by city state versus areal state organizations. METHODS: The frequency of requests and appointments made in 2019 were collected from the Association of Statutory Health Insurance Physicians organizations in Germany using a questionnaire. Statistical analysis comprised descriptive evaluations and a Kruskal-Wallis test. RESULTS: Data for appointments were available from 17 and information on requests from 16 Association of Statutory Health Insurance Physicians organizations. A total of 134,578 appointments were given. The number of granted appointments ranged from 193 to 21,810, revealing substantial differences between the individual organizations. The share of psychotherapeutic consultations among all psychotherapeutic appointments granted amounted to a median of 92%. Per organization, appointments were given for a median of 87% of requests for a psychotherapeutic consultation (range 56-100%), 96% for acute care requests (range 29-100%), and 97% for probatory session requests (range 27-100%) (n = 16, respectively). There were minor differences between city states and areal states in granting acute care and probatory sessions. DISCUSSION: There are deficits both in city state and areal state Association of Statutory Health Insurance Physicians organizations in terms of granting acute care and probatory sessions. Our results do not allow conclusions about distance to the practices or waiting times.

14.
Eur Thyroid J ; 12(5)2023 08 08.
Artículo en Inglés | MEDLINE | ID: mdl-37429326

RESUMEN

Background: Most thyroid cancers of follicular origin have a favorable outcome. Only a small percentage of patients will develop metastatic disease, some of which will become radioiodine refractory (RAI-R). Important challenges to ensure the best therapeutic outcomes include proper, timely, and appropriate diagnosis; decisions on local, systemic treatments; management of side effects of therapies; and a good relationship between the specialist, patients, and caregivers. Methods: With the aim of providing suggestions that can be useful in everyday practice, a multidisciplinary group of experts organized the following document, based on their shared clinical experience with patients with RAI-R differentiated thyroid cancer (DTC) undergoing treatment with lenvatinib. The main areas covered are patient selection, initiation of therapy, follow-up, and management of adverse events. Conclusions: It is essential to provide guidance for the management of RAI-R DTC patients with systemic therapies, and especially lenvatinib, since compliance and adherence to treatment are fundamental to achieve the best outcomes. While the therapeutic landscape in RAI-R DTC is evolving, with new targeted therapies, immunotherapy, etc., lenvatinib is expected to remain a first-line treatment and mainstay of therapy for several years in the vast majority of patients and settings. The guidance herein covers baseline work-up and initiation of systemic therapy, relevance of symptoms, multidisciplinary assessment, and patient education. Practical information based on expert experience is also given for the starting dose of lenvatinib, follow-up and monitoring, as well as the management of adverse events and discontinuation and reinitiating of therapy. The importance of patient engagement is also stressed.


Asunto(s)
Adenocarcinoma , Antineoplásicos , Neoplasias de la Tiroides , Humanos , Antineoplásicos/uso terapéutico , Radioisótopos de Yodo/uso terapéutico , Neoplasias de la Tiroides/tratamiento farmacológico , Compuestos de Fenilurea/uso terapéutico , Adenocarcinoma/inducido químicamente
15.
HNO ; 71(9): 592-598, 2023 Sep.
Artículo en Alemán | MEDLINE | ID: mdl-37422597

RESUMEN

Next to overall survival, quality of life is becoming more and more pivotal for cancer patients. The various domains of quality of life are complex and have different value to each patient. However, not only patients but also health care professionals, the pharmaceutical industry, and regulatory bodies ask: How can quality of life be reliably ascertained in clinical trials? For this purpose, carefully developed and validated specific questionnaires are needed: the patient-reported outcome measures (PROMs). A key challenge is to define how results based on PROMs can be used for shared decision-making. Next to clinical factors such as health and nutritional status, quality of life acts as a prognostic factor for overall survival in cancer. Thus, it is crucial to take quality of life into account in daily clinical practice.


Asunto(s)
Neoplasias de Cabeza y Cuello , Medicina , Humanos , Calidad de Vida , Medición de Resultados Informados por el Paciente , Encuestas y Cuestionarios , Neoplasias de Cabeza y Cuello/diagnóstico , Neoplasias de Cabeza y Cuello/terapia
16.
Endocrine ; 82(2): 419-426, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37450218

RESUMEN

PURPOSE: To investigate the quality of life (QoL) in patients with hypoparathyroidism (hypoPT) compared to the general population and to identify sociodemographic and clinical factors that are associated with symptom burden. METHODS: Patients with a diagnosis of hypoPT participated in an online survey. Information regarding the survey was distributed by treating physicians or a self-help organization. Quality of life was assessed using the EORTC QLQ-C30 and symptom burden using the Hypoparathyroid Patient Questionnaire (HPQ28). Multivariate linear regression analysis was used to compare QoL of hypoPT patients with the general population (adjusted for age, sex, education)and to identify factors associated with symptom burden. RESULTS: Altogether, 264 hypoPT patients provided information on QoL and symptom burden. HypoPT was associated with worse cognitive (ß = -15.9; p < 0.01) and emotional functioning (ß = -12.3; p = 0.04) compared to the general population. The highest symptom burden in hypoPT patients was observed for the domains loss of vitality (mean: 61.4; SD: 21.9), pain and cramps (mean: 43.7; SD: 26.5), and numbness and tingling sensations (mean: 38.9; SD: 30.0). Female gender was associated with a higher symptom burden across all nine domains of the HPQ28, while longer disease duration was associated with a lower symptom burden in neurovegetative symptoms, loss of vitality, depression and anxiety, and depressive symptoms. CONCLUSION: HypoPT patients have impaired QoL compared to the general population. Being female is strongly associated with high symptom burden.


Asunto(s)
Hipoparatiroidismo , Calidad de Vida , Humanos , Femenino , Masculino , Calidad de Vida/psicología , Hipoparatiroidismo/epidemiología , Encuestas y Cuestionarios , Dolor , Ansiedad/epidemiología
17.
Thyroid ; 33(9): 1078-1089, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37450344

RESUMEN

Purpose: The aim of this study was to validate the new European Organisation for Research and Treatment of Cancer Quality of Life Thyroid Cancer Module (EORTC QLQ-THY34). Methods: We enrolled 437 thyroid cancer patients from 17 countries. One group (n = 303), undergoing treatment or best supportive care, completed the questionnaires at three time points (before therapy [t1], 6 weeks later [t2], and 6 months after t2 [t3]). A second group (survivors ≥2 years after diagnosis, n = 134) completed it at a random baseline time point and a second time 1 week later. We determined internal consistency (using Cronbach's alpha), the scale structure (with confirmatory factor analysis), and discriminant validity (using known-group comparisons). Group 1 data were used to assess responsiveness and group 2 data to determine test-retest reliability using intra-class correlations (ICC). Results: All 34 items fulfilled the criteria to be kept in the questionnaire. Cronbach's alpha was >0.70 in 8 of the 9 multi-item scales. All standardized factor loadings exceeded 0.40, confirming the proposed scale structure. The ICC was >0.70 in all scales expressing good test-retest reliability. Differences in scale scores between patients with different histology were >5 points in all scales. In all but one of the pre-specified scales (Dry Mouth), changes over time were ≥|4| points between at least two time points. Conclusion: The EORTC QLQ-THY34 with its 9 multi-item and 8 single-item scales is a reliable and valid tool to measure quality of life in thyroid cancer patients and can be used in future trials and studies.


Asunto(s)
Calidad de Vida , Neoplasias de la Tiroides , Humanos , Reproducibilidad de los Resultados , Psicometría , Encuestas y Cuestionarios , Neoplasias de la Tiroides/terapia
18.
Hormones (Athens) ; 22(3): 467-476, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37380916

RESUMEN

PURPOSE: Hypoparathyriodism (hypoPT) is a rare endocrine disorder. It is not known how hypoPT is managed in Germany or whether patients have unmet information needs or impairments in their daily living. METHODS: HypoPT patients at a minimum of 6 months' post-diagnosis were invited to participate in an online survey through their treating physician or through patient organizations. An extensive questionnaire, which was developed and pilot-tested with hypoPT patients, was administered. RESULTS: A total of 264 patients with a mean age of 54.5 years (SD: 13.3), 85.2% female and 92% with postsurgical hypoPT, participated in the study. In total, 74% of the patients reported regular monitoring of serum calcium at least every 6 months, with lower control frequencies for phosphate (47%), magnesium (36%), creatinine (54%), and parathyroid hormone (50%), and 24-h urine calcium excretion (36%) on a yearly basis. Information on symptoms of hypo- and hypercalcemia was available in 72 and 45% of the patients. Information needs were related to the disease and its treatment as well as to nutrition, physical activities/sports, and support opportunities. Statistically significant differences for all information needs in association with symptom burden were observed. Hospitalization for hypocalcemia was reported by 32%, nutritional impairments (38%) or impact on work ability (52%) was available among patients with hypoPT. CONCLUSION: HypoPT patients experience impairments in daily living and report unmet information needs. Patient and physician education regarding hypoPT is one of the key concepts for improving the management of patients with hypoPT.


Asunto(s)
Calcio , Hipoparatiroidismo , Humanos , Femenino , Persona de Mediana Edad , Masculino , Complicaciones Posoperatorias , Hipoparatiroidismo/epidemiología , Hipoparatiroidismo/terapia , Hormona Paratiroidea , Gestión de la Información
19.
Geburtshilfe Frauenheilkd ; 83(6): 702-707, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37288248

RESUMEN

Objective To evaluate the proportion of breast cancer (BC) patients with distress or psychological comorbidity as well as offer and use of psychological support in subgroups of BC patients with different extents of distress. Methods 456 patients with BC were evaluated at baseline (t1) and until 5 years after diagnosis (t4) at the BRENDA certified BC centers. Logistic regression was used to analyze if patients with distress at t1 received offers and actual psychological support more often than patients without distress at t1. Regression analyses were used to examine if acute, emerging or chronic disease was associated with higher rates of offer and use of psychotherapy as well as intake of psychotropic drugs. Results In 45% of BC patients psychological affection was detected at t4. The majority of patients with moderate or severe distress at t1 (77%) received the offer for psychological service, while 71% of those received the offer for support at t4. Patients, who were psychologically affected at t1, have not been offered psychological services more often than those without, but they significantly more often used services if offered. Especially patients with acute comorbidity received significantly more often an offer for psychotherapy compared to unimpaired patients, while those patients with emerging or chronic disease did not. 14% of BC patients took psychopharmaceuticals. This mainly concerns patients with chronic comorbidity. Conclusion Psychological services were offered to and used by a fair amount of BC patients. All subgroups of BC patients should be addressed, in order to improve the comprehensive supply with psychological services.

20.
J Breast Cancer ; 26(3): 243-253, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37272248

RESUMEN

PURPOSE: Due to improved therapy, early diagnosis, and growing incidence rates, the number of long-term breast cancer survivors is increasing. Survivors can still be affected by aftercare, resulting in reduced quality of life (QoL). Thus, in this study, we investigated possible predictors of decreased physical and social functioning in breast cancer survivors. METHODS: In a German multicenter prospective study, we enrolled 759 female patients with breast cancer before surgery (t1), and contacted them again 5 years after surgery (t4). Data on QoL were assessed at t4 using the European Organization for Research and Treatment of Cancer QoL Core Questionnaire (EORTC QLQ-C30) and its breast cancer module EORTC QLQ-BR23. Predictors of decreased physical and social functioning were analyzed using logistic regression with odds ratios as effect estimates and 95% confidence intervals. Thresholds for the clinical importance of detrimental effects on QoL were defined according to Giesinger. RESULTS: Questionnaires from 759 patients were retrieved at t1. Of these, 456 participated in the study at t4. Poor QoL 5 years after diagnosis was reported by 20%-50% of the participants. Age, mastectomy, chemotherapy, education, employment, cohabitation, psychiatric comorbidities at t1, anxiety, depression, and intensity of physical activity emerged as predictors of decreased physical and social functioning 5 years after diagnosis. CONCLUSION: Relief of symptoms and improvement in the QoL should be priorities in aftercare. Detecting patients with a decreased QoL is a rising challenge. Healthcare providers should take special care of patients aged 50-59 years, patients with psychiatric comorbidities and depression, and patients who have undergone mastectomy.

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