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RESEARCH QUESTION: From a value-based healthcare (VBHC) perspective, does an assessment of clinical outcomes and intervention costs indicate that providing cognitive behavioural therapy (CBT) or mindfulness to women seeking fertility treatment add value compared with no such intervention? DESIGN: Proof-of-concept business case based on a VBHC perspective that considers clinical outcomes and costs. Potential effects on psychological and fertility outcomes were based on existing research. Cost outcomes were estimated with a costing model for the Dutch fertility treatment setting. RESULTS: Thirty-two studies were identified; 13 were included. Women who received CBT had 12% lower anxiety, 40% lower depression and 6% higher fertility quality of life; difference in clinical pregnancy rates was six percentage points (CBT [30.2%]; control [24.2%]); difference in fertility discontinuation rates was 10 percentage points (CBT [5.5%]; control [15.2%]). Women who received training in mindfulness had 8% lower anxiety, 45% lower depression and 21% higher fertility quality of life; difference in mean clinical pregnancy rate was 19 percentage points (mindfulness [44.8%]; control [26.0%]). Potential total cost savings was about 1.2 million per year if CBT was provided and 11 million if mindfulness was provided. Corresponding return on investment for CBT was 30.7%, and for mindfulness 288%. Potential cost benefits are influenced by the assumed clinical pregnancy rates; such data related to mindfulness were limited to one study. CONCLUSIONS: The provision of CBT or mindfulness to women seeking fertility treatment could add value. Higher quality primary studies are needed on the effect of mindfulness on clinical pregnancy rates.
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Terapia Cognitivo-Conductual , Humanos , Femenino , Embarazo , Terapia Cognitivo-Conductual/economía , Atención Plena/economía , Calidad de Vida , Intervención Psicosocial/economía , Depresión/terapia , Índice de Embarazo , Adulto , Ansiedad/terapia , Análisis Costo-BeneficioRESUMEN
OBJECTIVE: Chemotherapy-induced alopecia (CIA) is one of the most common and distressing side effects of chemotherapy treatment. This study aims to assess the illness perceptions of female patients dealing with CIA, and their associations with demographic and clinical characteristics, coping strategies, and quality of life. The secondary aim was to compare the illness perceptions of patients with CIA with other samples, to help elucidate the specific perceptions of patients with CIA. METHOD: Forty female patients at risk of severe hair loss due to chemotherapy treatment were included at the oncological daycare unit of a teaching hospital in the Netherlands. Patients were asked to complete the Brief-Illness Perception Questionnaire (B-IPQ) and the Hair Quality of Life (Hair-QoL) questionnaire. RESULTS: Illness perceptions indicated that although patients understood their hair loss, they lacked being able to make sense of managing it, negatively impacting patients' lives. Psychological quality of life was significantly correlated with the B-IPQ domains: consequences, degree of concern, and emotional response. Social quality of life was significantly correlated with psychological quality of life. Patients with CIA felt significantly less able to manage their hair loss, compared to patients with breast cancer and psoriatic arthritis. CONCLUSION: As patients' beliefs of being able to manage their hair loss are important for adopting and maintaining adequate coping behaviors, additional effort of health care providers in fostering patients' sense of control is indicated, focusing on patients' strengths during and after chemotherapy treatment. In the context of developing interventions for patients with CIA, consequences, concern, and emotional response are the major dimensions that should be taken in account to help patients deal with hair loss.
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Antineoplásicos , Neoplasias de la Mama , Alopecia/inducido químicamente , Alopecia/tratamiento farmacológico , Antineoplásicos/efectos adversos , Neoplasias de la Mama/tratamiento farmacológico , Femenino , Cabello , Humanos , Calidad de Vida/psicologíaRESUMEN
PURPOSE: Scalp cooling can prevent chemotherapy-induced alopecia (CIA). Previously, the post-infusion cooling time (PICT) could be successfully reduced in docetaxel-treated patients from 90 to 45 and 20 min. Therefore, it seems plausible that the PICT can be shortened for paclitaxel-treated patients as well. METHODS: Patients treated with weekly paclitaxel were included in this multi-centre trial and randomly assigned to a PICT of 45 or 20 min. The results were compared to a standard PICT of 90 min, derived from prospective collected data from the Dutch Scalp Cooling Registry. The primary endpoint was the percentage of patients who decide to not wear a wig or head covering. Secondary endpoints were the degree of CIA assessed with the Dean scale for assessment of hair loss; alopecia graded according to NCI CTC toxicity version 4.03 (CTCAE4.03); tolerance of scalp cooling and perceived distress of CIA. RESULTS: Ninety-one patients were enrolled in this study; 74 patients were evaluable for hair loss. Hair preservation was successful in 27 patients (75%) with a PICT of 45 min and in 31 patients (82%) with a PICT of 20 min. There was no difference in success rate with the standard PICT of 90 min (85%, p = 0.29). Similar success rates were seen when using the Dean scale and CTCAE assessment, with no differences between groups (p = 0.12 and p = 0.38). CONCLUSIONS: A 20 min PICT is as effective as 45 and 90 min to prevent weekly paclitaxel-induced alopecia and should be the new standard of care. TRIAL REGISTER: ClinicalTrials.gov Identifier: NCT03266185.
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Antineoplásicos , Neoplasias de la Mama , Hipotermia Inducida , Alopecia/inducido químicamente , Alopecia/prevención & control , Antineoplásicos/efectos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/efectos adversos , Neoplasias de la Mama/etiología , Femenino , Humanos , Hipotermia Inducida/métodos , Paclitaxel/efectos adversos , Estudios Prospectivos , Cuero Cabelludo , Taxoides/efectos adversosRESUMEN
PURPOSE: In the phase II DIRECT study a fasting mimicking diet (FMD) improved the clinical response to neoadjuvant chemotherapy as compared to a regular diet. Quality of Life (QoL) and illness perceptions regarding the possible side effects of chemotherapy and the FMD were secondary outcomes of the trial. METHODS: 131 patients with HER2-negative stage II/III breast cancer were recruited, of whom 129 were randomly assigned (1:1) to receive either a fasting mimicking diet (FMD) or their regular diet for 3 days prior to and the day of neoadjuvant chemotherapy. The European Organisation for Research and Treatment of Cancer (EORTC) questionnaires EORTC-QLQ-C30 and EORTC-QLQ-BR23; the Brief Illness Perception Questionnaire (BIPQ) and the Distress Thermometer were used to assess these outcomes at baseline, halfway chemotherapy, before the last cycle of chemotherapy and 6 months after surgery. RESULTS: Overall QoL and distress scores declined during treatment in both arms and returned to baseline values 6 months after surgery. However, patients' perceptions differed slightly over time. In particular, patients receiving the FMD were less concerned and had better understanding of the possible adverse effects of their treatment in comparison with patients on a regular diet. Per-protocol analyses yielded better emotional, physical, role, cognitive and social functioning scores as well as lower fatigue, nausea and insomnia symptom scores for patients adherent to the FMD in comparison with non-adherent patients and patients on their regular diet. CONCLUSIONS: FMD as an adjunct to neoadjuvant chemotherapy appears to improve certain QoL and illness perception domains in patients with HER2-negative breast cancer. Trialregister ClinicalTrials.gov Identifier: NCT02126449.
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Neoplasias de la Mama , Calidad de Vida , Neoplasias de la Mama/tratamiento farmacológico , Dieta , Ayuno , Femenino , Humanos , Terapia Neoadyuvante , Percepción , Encuestas y CuestionariosRESUMEN
PURPOSE: Novels and autopathographies that employ cancer as a central theme offer a wealth of opportunities for researching the way patients with cancer make sense of their illness and its treatment. Such literatures can also inform clinical care, because they can support patients in living with their illness. The use of novels and autopathographies for research and care in persons with cancer fits within the framework of 'Health Humanities', the interdisciplinary field where medicine and social science meet. This paper presents a concise overview of novels and autopathographies that explore cancer as their theme. METHODS: Literature searches were conducted using PubMed, major scientific journals of medicine and clinical oncology, and databases in the Health Humanities. Searches focused on novels and autopathographies where cancer is the central theme, which are available in English, and which can be considered to represent 'high literature'. RESULTS: Twenty-nine books were identified. The majority of the books were written originally in English, and breast cancer and lung cancer were the most frequently discussed types of cancer. The core themes identified were giving meaning to illness; coping with medical treatment; and the psychological and social consequences of illness. CONCLUSION: Novels and autopathographies about cancer represent an innovative base for research on living with cancer and offer rich data on how people make sense of cancer and its medical treatment. Clinical implications of this review pertain to interventions based on bibliotherapy and expressive writing. Novels and autopathographies are just part of the Health Humanities context: a wide range of art genres may prove helpful in improving the quality of life of persons with cancer.
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Adaptación Psicológica , Autobiografías como Asunto , Obras de Ficción como Asunto , Literatura Moderna , Neoplasias de la Mama , Bases de Datos Factuales , Femenino , Humanos , Neoplasias Pulmonares/psicología , Calidad de Vida/psicología , EscrituraRESUMEN
OBJECTIVE: Unmet health care needs require additional care resources to achieve optimal patient well-being. In this nationwide study we examined associations between a number of risk factors and unmet needs after treatment among women with breast cancer, while taking into account their health care practices. We expected that more care use would be associated with lower levels of unmet needs. METHODS: A multicenter, prospective, observational design was employed. Women with primary breast cancer completed questionnaires 6 and 15 months post-diagnosis. Medical data were retrieved from medical records. Direct and indirect associations between sociodemographic and clinical risk factors, distress, care use, and unmet needs were investigated with structural equation modeling. RESULTS: Seven hundred forty-six participants completed both questionnaires (response rate 73.7%). The care services received were not negatively associated with the reported levels of unmet needs after treatment. Comorbidity was associated with higher physical and daily living needs. Higher age was associated with higher health system-related and informational needs. Having had chemotherapy and a mastectomy were associated with higher sexuality needs and breast cancer-specific issues, respectively. A higher level of distress was associated with higher levels of unmet need in all domains. CONCLUSIONS: Clinicians may use these results to timely identify which women are at risk of developing specific unmet needs after treatment. Evidence-based, cost-effective (online) interventions that target distress, the most influential risk factor, should be further implemented and disseminated among patients and clinicians.
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Neoplasias de la Mama/psicología , Supervivientes de Cáncer/psicología , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Adulto , Anciano , Neoplasias de la Mama/terapia , Femenino , Humanos , Mastectomía/estadística & datos numéricos , Persona de Mediana Edad , Evaluación de Necesidades/normas , Estudios Prospectivos , Factores de Riesgo , Apoyo Social , Encuestas y CuestionariosRESUMEN
Objective: Asthma control and quality of life (QoL) are important disease outcomes for asthma patients. Illness perceptions (cognitive and emotional representations of the illness) and medication beliefs have been found to be important determinants of medication adherence, and subsequently disease control and QoL in adults with asthma. In adolescents, this issue needs further elucidation. Therefore, the aim of this study was to explore the relationship between illness perceptions, medication beliefs, medication adherence, disease control, and QoL in adolescents with asthma.Methods: In this cross-sectional study, we used baseline data of adolescents with asthma (age 12-18 years) who participated in the ADolescent Adherence Patient Tool (ADAPT) study. Questionnaires were administrated online, and included sociodemographic variables and validated questionnaires measuring self-reported illness perceptions, medication beliefs, medication adherence, disease control, and QoL.Results: Data of 243 adolescents with asthma were available; age 15.1 ± 2.0 years and 53% females. More than half of these adolescents (62%; n = 151) reported to be non-adherent (Medication Adherence Report Scale ≤23) and 77% (n = 188) had uncontrolled asthma. There was a strong positive correlation between disease control and QoL (r = 0.74). All illness perceptions items were correlated with disease control and QoL, with the strongest correlation between 'identity' (symptom perception) and QoL (r=-0.66). Medication adherence was correlated to medication beliefs (r = 0.38), disease control (r = 0.23), and QoL (r = 0.14), whereas medication beliefs were only associated with adherence.Conclusions: Stimulating positive illness perceptions and medication beliefs might improve adherence, which in turn might lead to improved disease control and better QoL.
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Asma/tratamiento farmacológico , Asma/psicología , Broncodilatadores/uso terapéutico , Conocimientos, Actitudes y Práctica en Salud , Cumplimiento de la Medicación/psicología , Calidad de Vida/psicología , Adolescente , Asma/fisiopatología , Broncodilatadores/administración & dosificación , Niño , Estudios Transversales , Emociones , Femenino , Humanos , Masculino , PercepciónRESUMEN
BACKGROUND: The number of women with breast cancer in general practice is rising. To address their needs and wishes for a referral, GPs might benefit from more insight into women's health care practices and need for additional support. OBJECTIVE: To examine the prevalence of health care use and remaining needs among women with breast cancer in the first 15 months after diagnosis. METHODS: In this multicentre, prospective, observational study women with breast cancer completed a questionnaire at 6 and 15 months post-diagnosis. Medical data were retrieved through chart reviews. The prevalence of types of health care used and remaining needs related to medical, psychosocial, paramedical and supplementary service care (such as home care), was examined with descriptive analyses. RESULTS: Seven hundred forty-six women completed both questionnaires. At both assessments patients reported that they had most frequent contact with medical and paramedical providers, independent of types of treatment received. Three to fifteen percent of the patients expressed a need for more support. Prominent needs included a wish for more frequent contact with a physiotherapist, a clinical geneticist and a psychologist. Patients also wanted more help for chores around the house, particularly in the early post-treatment phase. CONCLUSION: A small but relevant percentage of women with breast cancer report having unmet needs. GPs may need to be particularly watchful of their need for more support from specific providers. Future research into the necessity of structural needs assessment among cancer patients in general practice is warranted.
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Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/terapia , Médicos Generales , Necesidades y Demandas de Servicios de Salud , Aceptación de la Atención de Salud , Rol del Médico , Apoyo Social , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Persona de Mediana Edad , Evaluación de Necesidades , Estudios Prospectivos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Artistic representations of disease are widespread yet largely ignored in health psychology research. In this paper we use two infectious diseases, tuberculosis and the plague, as tracers to study how infectious diseases are represented in novels, films, paintings, and songs. They were represented especially in terms of their causes and seriousness. Studying how diseases are represented in various art forms extends our understanding of how they are socially constructed. This knowledge can also be incorporated into the training of health care providers to sensitize them to issues in patient care.
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Medicina en las Artes , Peste , Tuberculosis , HumanosRESUMEN
The 10-item Perceived Efficacy in Patient-Physician Interactions (PEPPI-10) questionnaire was used as an indirect measure of the patients' perception of the strength of their therapeutic connection with their physician. The English version of the PEPPI-10 could serve as a valuable research tool for analyzing the relationship between patient and physician. The incidence of breast cancer is amongst the highest in Japan, and Patient Reported Outcome is often used as an outcome measure for breast cancer. It is particularly important to establish a strong patient-physician interaction for patients with breast cancer, since these patients require long-term treatment. We designed the present study to assess the reliability and validity of the Japanese version of the PEPPI-10 in female Japanese breast cancer outpatients. A cross-sectional study was performed at the Saitama Cancer Center, Japan. From August 2014 to August 2015, the Japanese versions of the PEPPI-10 that measure patient-perceived self-efficacy and the Brief Illness Perception Questionnaire (BIPQ) that measure illness perception were used for 92 breast cancer patients who received outpatient chemotherapy (mean age: 52.9 years, Cancer Stage I or Stage II : 82.6%, receiving adjuvant chemotherapy: 69.6%). We found that the Japanese version of the PEPPI-10 scale had a high coefficient of internal consistency (Cronbach's α coefficient, 0.83) for reliability, and concurrent validity analysis indicated that the utility of PEPPI-10 was moderately correlated with that of the BIPQ. In conclusion, the Japanese version of the PEPPI-10 is a useful tool that can empower breast cancer outpatients during the course of their treatment.
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Neoplasias de la Mama/epidemiología , Pacientes Ambulatorios , Relaciones Médico-Paciente , Encuestas y Cuestionarios , Análisis Factorial , Femenino , Humanos , Japón , Persona de Mediana Edad , Reproducibilidad de los ResultadosRESUMEN
Objective: To investigate the association between illness perceptions and disability both cross-sectionally and over 2 years in patients with hand OA. Methods: Illness perceptions and self-reported disability were assessed at baseline and after 2 years in 384 patients with primary hand OA (mean age 61 years, 84% women, n = 312 with follow-up) with the Illness Perception Questionnaire - Revised (IPQ-R), Functional Index for Hand OA, Australian/Canadian Hand OA Index and HAQ. Risk ratios for high disability (highest quartile) at both time points were estimated for tertiles of IPQ-R dimensions, using Poisson regression. The mean IPQ dimension change difference between patients with and without disability progression (change Functional Index for Hand OA ⩾ 1, Australian/Canadian Hand OA Index > 1.4, HAQ > 0.22) was estimated with linear regression. Analyses were adjusted for age, Doyle index and baseline score. Results: At baseline, stronger negative illness perceptions were associated with high disability. Baseline illness perceptions were also associated with high disability after 2 years, although adjustment made apparent that these associations were confounded by baseline disability status. Most illness perceptions changed over 2 years; understanding increased, OA was regarded as more chronic and fewer emotions and consequences and less personal and treatment control were experienced. The 2 year change in disability was different between patients with and without progression for the illness perceptions of more perceived consequences, symptoms, treatment control and emotions. Conclusion: Illness perceptions seemed to be implicated in disability and its progression. Our results suggest that interventions could focus on improving baseline disability, potentially using illness perceptions to accomplish this goal.
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Autoevaluación Diagnóstica , Evaluación de la Discapacidad , Progresión de la Enfermedad , Osteoartritis/psicología , Índice de Severidad de la Enfermedad , Anciano , Estudios Transversales , Femenino , Articulaciones de la Mano/fisiopatología , Humanos , Modelos Lineales , Masculino , Persona de Mediana Edad , Osteoartritis/fisiopatología , Percepción , Distribución de Poisson , Factores de TiempoRESUMEN
PURPOSE: We studied how lung cancer is represented in five art genres: novels, poems, films, music, and paintings, in order to put lung cancer in a biopsychosocial perspective. The Common Sense Model is the theoretical basis: illness perceptions regarding lung cancer are examined in exemplars of the art genres. METHODS: Literature searches, websites, and personal files formed the database. They produced a fairly limited number of novels, poems, films, music pieces, and paintings with lung cancer as core element. RESULTS: A resigned, rather depressive response associated with great emotional turmoil to the diagnosis of lung cancer, its treatment and dismal outcome, figure rather prominently in the identified sources. CONCLUSIONS: Living with lung cancer is scarcely portrayed in novels, poems, film, music, and paintings. When portrayed, a depressive and resigned attitude colors the illness perceptions. Elements from the Medical Humanities (e.g., expressive writing, photovoice, painting) deserve further study in order to examine whether they help improve the quality of life of patients with lung cancer.
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Bases de Datos Factuales/estadística & datos numéricos , Neoplasias Pulmonares/psicología , Medicina en las Artes , Percepción , Emociones , Humanos , Masculino , Películas Cinematográficas , Música , Pinturas , Calidad de Vida , EscrituraRESUMEN
Background Oliver Sacks (1933-2015) published a large number of books on a variety of neurological topics. Of these, numerous copies have been sold and they probably serve as the only or main source of information on neurological diseases for many persons without a medical background. His first book was on migraine and in his subsequent books many descriptions of migraine can be found, mainly those of auras. Methods We explored the descriptions of migraine in Sacks' work in order to evaluate the image of migraine offered to the readers. Conclusion Oliver Sacks gave wonderful descriptions of migraine auras, but hardly any of migraine headache. Furthermore, he described rare auras such as 'amusia' and olfactory auras. Overall, this makes his descriptions of migraine not very useful to serve as medical information for laypersons. Oliver Sacks, however, wrote great literature.
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Personajes , Migraña con Aura/historia , Neurólogos/historia , Literatura en Psiquiatría , Historia del Siglo XX , Historia del Siglo XXI , Humanos , Migraña con Aura/diagnóstico , Migraña con Aura/psicologíaRESUMEN
To date, little is known about enduring clinical distress as measured with the commonly used distress thermometer. We therefore used the distress thermometer to examine: (a) the prevalence of enduring clinical distress, distress-related problems, and subsequent wish for referral of women with breast cancer, and (b) sociodemographic, clinical, and psychosocial predictors of enduring clinical distress. The study had a multicenter, prospective, observational design. Patients with primary breast cancer completed a questionnaire at 6 and 15 months postdiagnosis. Medical data were retrieved from chart reviews. Enduring clinical distress was defined as heightened distress levels over time. The prevalence of enduring clinical distress, problems, and wish for referral was examined with descriptive analyses. Associations between predictors and enduring clinical distress were examined with multivariate analyses. One hundred sixty-four of 746 patients (22 %) reported having enduring clinical distress at 6 and 15 months postdiagnosis. Of these, 10 % wanted to be referred for care. Fatigue was the most frequently reported problem by patients with and without clinical distress, at both time points. Lack of muscle strength (OR = 1.82, 95 % CI 1.12-2.98), experience of a low level of life satisfaction (OR = 0.77, 95 % CI 0.67-0.89), more frequent cancer worry (OR = 1.40, 95 % CI 1.05-1.89), and neuroticism (OR = 1.09, 95 % CI 1.00-1.18) were predictors of enduring clinical distress. In conclusion, one in five women with breast cancer develops enduring clinical distress. Oncologists, nurse practitioners, and cancer nurses are advised to use single-item questions about distress and distress-related problems to ensure timely detection of high-risk patients. Providers should also routinely assess fatigue and its causes, as fatigue is the most frequently reported distress-related problem over time.
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Neoplasias de la Mama/cirugía , Mastectomía Segmentaria/métodos , Estrés Psicológico/etnología , Neoplasias de la Mama/etnología , Neoplasias de la Mama/psicología , Estudios Transversales , Femenino , Humanos , Medicaid , Persona de Mediana Edad , Estudios Prospectivos , Calidad de la Atención de Salud , Calidad de Vida , Estrés Psicológico/etiología , Encuestas y Cuestionarios , Tiempo de Tratamiento , Estados Unidos/etnologíaRESUMEN
BACKGROUND: Patients report persisting impairment in quality of life (QoL) after treatment for pituitary disease. At present, there is no questionnaire to assess (a) whether patients with pituitary disease are bothered by these consequences, and (b) their needs for support. OBJECTIVE: To develop and validate a disease-specific questionnaire for patients with pituitary disease which incorporates patient perceived bother related to the consequences of the disease, and their needs for support. METHODS: Items for the Leiden Bother and Needs Questionnaire for patients with pituitary disease (LBNQ-Pituitary) were formulated based on results of a recent focus group study (n = 49 items). 337 patients completed the LBNQ-Pituitary and six validated QoL questionnaires (EuroQoL-5D, SF-36, MFI-20, HADS, AcroQol, CushingQoL). Construct validity was examined by exploratory factor analysis. Reliabilities of the subscales were calculated with Cronbach's alphas, and concurrent validity was assessed by calculating Spearman's correlations between the LBNQ-Pituitary and the other measures. RESULTS: Factor analyses produced five subscales (i.e., mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, issues in social functioning) containing a total of 26 items. All factors were found to be reliable (Cronbach's alphas all ≥.765), and the correlations between the dimensions of the LBNQ-Pituitary and other questionnaires (all P ≤ .0001) demonstrated convergent validity. CONCLUSIONS: The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patients' needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL.
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Afecto , Cognición , Evaluación de Necesidades , Enfermedades de la Hipófisis/psicología , Calidad de Vida/psicología , Salud Reproductiva , Conducta Social , Adenoma/psicología , Adenoma/terapia , Adulto , Anciano , Antineoplásicos Hormonales/uso terapéutico , Irradiación Craneana , Análisis Factorial , Femenino , Adenoma Hipofisario Secretor de Hormona del Crecimiento/psicología , Adenoma Hipofisario Secretor de Hormona del Crecimiento/terapia , Terapia de Reemplazo de Hormonas , Humanos , Hipofisectomía , Hipopituitarismo/psicología , Hipopituitarismo/terapia , Masculino , Persona de Mediana Edad , Medición de Resultados Informados por el Paciente , Hipersecreción de la Hormona Adrenocorticotrópica Pituitaria (HACT)/psicología , Hipersecreción de la Hormona Adrenocorticotrópica Pituitaria (HACT)/terapia , Enfermedades de la Hipófisis/terapia , Neoplasias Hipofisarias/psicología , Neoplasias Hipofisarias/terapia , Prolactinoma/psicología , Prolactinoma/terapia , Radioterapia , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
PURPOSE: Pituitary adenomas give rise to physical and psychological symptoms, which may persist after biochemical cure. Growing attention has been paid to quality of life (QoL) in these patients. We aimed to systematically analyze QoL assessment methods and QoL outcome in these patients. METHODS: We conducted a systematic literature search up to January 2014 in PubMed, Web of Knowledge, PsycInfo and EMBASE. RESULTS: 102 papers assessing QoL in patients with a pituitary adenoma were included. In clinical (original) studies in which QoL was the primary outcome parameter (n = 54), 19 studies combined a generic questionnaire with a disease-specific questionnaire. QoL was found to be impaired in patients with active disease relative to controls, and generally improved during biochemical cure. However, no normalization occurred, with patients with remitted Cushing's disease demonstrating the smallest improvement. Somatic factors (e.g., hypopituitarism, sleep characteristics), psychological factors (illness perceptions) and health care environment (rural vs. urban) were identified as influencing factors. Intervention studies (predominantly evaluating medical interventions) have been found to improve QoL. CONCLUSIONS: The growing number of studies assessing QoL generally described the negative impact of pituitary adenomas. QoL research in this patient group could be further elaborated by the development of disease-specific questionnaires for prolactinoma and non-functioning adenoma, consequent use of generic and disease-specific questionnaires and using a long-term (longitudinal) follow-up. Surgical and pharmacological interventions improve but not normalize QoL. We postulate that there might be margin for further improvement of QoL, for instance by using psychosocial interventions, in addition to optimal medical treatment.
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Adenoma/psicología , Neoplasias Hipofisarias/psicología , Calidad de Vida , Adenoma/complicaciones , Adenoma/diagnóstico , Adenoma/terapia , Costo de Enfermedad , Humanos , Neoplasias Hipofisarias/complicaciones , Neoplasias Hipofisarias/diagnóstico , Neoplasias Hipofisarias/terapia , Pronóstico , Factores de Riesgo , Encuestas y CuestionariosRESUMEN
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.
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Enfermedades de la Hipófisis/fisiopatología , Calidad de Vida , Acromegalia/fisiopatología , Acromegalia/psicología , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Enfermedades de la Hipófisis/psicología , Neoplasias Hipofisarias/fisiopatología , Neoplasias Hipofisarias/psicología , Prolactinoma/fisiopatología , Prolactinoma/psicología , Encuestas y CuestionariosRESUMEN
BACKGROUND: Despite evidence that the blood-saving measures (BSMs) erythropoietin (EPO) and intra- and postoperative blood salvage are not (cost-)effective in primary elective total hip and knee arthroplasties, they are used frequently in Dutch hospitals. This study aims to assess the impact of barriers associated with the intention of physicians to stop BSMs. STUDY DESIGN AND METHODS: A survey among 400 orthopedic surgeons and 400 anesthesiologists within the Netherlands was performed. Multivariate logistic regression was used to identify barriers associated with intention to stop BSMs. RESULTS: A total of 153 (40%) orthopedic surgeons and 100 (27%) anesthesiologists responded. Of all responders 67% used EPO, perioperative blood salvage, or a combination. After reading the evidence on non-cost-effective BSMs, 50% of respondents intended to stop EPO and 53% to stop perioperative blood salvage. In general, barriers perceived most frequently were lack of attention for blood management (90% of respondents), department priority to prevent transfusions (88%), and patient characteristics such as comorbidity (81%). Barriers significantly associated with intention to stop EPO were lack of interest to save money and the impact of other involved parties. Barriers significantly associated with intention to stop perioperative blood salvage were concerns about patient safety, lack of alternatives, losing experience with the technique, and lack of interest to save money. CONCLUSION: Physicians experience barriers to stop using BSMs, related to their own technical skills, patient safety, current blood management policy, and lack of interest to save money. These barriers should be targeted in strategies to make BSM use cost-effective.
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Artroplastia de Reemplazo de Cadera/economía , Artroplastia de Reemplazo de Rodilla/economía , Actitud del Personal de Salud , Eritropoyetina/economía , Recuperación de Sangre Operatoria/economía , Médicos/psicología , Anestesiología , Análisis Costo-Beneficio , Estudios Transversales , Eritropoyetina/uso terapéutico , Medicina Basada en la Evidencia , Femenino , Encuestas de Atención de la Salud , Humanos , Masculino , Análisis Multivariante , Países Bajos , Ortopedia , Pautas de la Práctica en Medicina/economía , Encuestas y CuestionariosRESUMEN
INTRODUCTION: This study examined the effectiveness of low-intensity, practice-tailored training for general practitioners (GPs) aimed at personal and organizational barriers that arise when routinely asking patients' smoking status, advising to quit, and arranging follow-up. METHODS: A cluster-randomized controlled trial with 49 GPs and 3,401 patients (677 smokers). Two patient groups participated: 2,068 patients (433 smokers) at baseline and 1,333 patients (244 smokers) postintervention. At follow-up, 225 smokers of both groups participated. The primary outcome was GP smoking cessation counseling (asking about smoking status, advising to quit, prescribing pharmacotherapy, and referring for behavioral support). Secondary outcomes were GPs' attitudes toward smoking cessation care, patients' intention to quit, and long-term quit rates. Outcomes were measured with GP self-report and patient report. RESULTS: Patients of trained GPs reported more often being asked about smoking behavior compared with patients of untrained GPs (OR = 1.94, 95% CI = 1.45-2.60). According to GP self-report, the training increased the provision of quit-smoking advices (difference 0.56 advice per day; 95% CI = 0.13-0.98) and the ability and intention of providing smoking cessation care. We found no effect on GPs' arrangement of follow-up, smokers' intention to quit, and long-term quit rates. CONCLUSIONS: After 1 hour of training, we found significant differences between trained and untrained GPs on the frequency in which they asked about smoking (patient reported) and advised smokers to quit (GP self-reported). The training did not increase prescriptions of pharmacotherapy, referrals to behavioral support, or quit rates. Future training methods should focus on the GPs' ability, tools, and skills to arrange follow-up to ensure intensive smoking cessation support.
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Médicos Generales/educación , Médicos Generales/psicología , Cese del Hábito de Fumar , Adulto , Consejo , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
The intercorrelations among the 15 scales of the 30-item Core version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire suggest that one may combine (1) the physical functioning and role functioning scales, (2) the emotional functioning and cognitive functioning scales, and (3) the nine symptom scales. Together with the global health/quality of life scale and the social functioning scale, five measures remain. Principal component analysis of those five measures, using data from Japanese and Dutch breast and lung cancer patients, yielded two dimensions: (1) generalized health related quality of life and (2) health-independent psychological well-being. The correlations of these dimensions with the Brief Illness Perception Questionnaire and Karnofsky performance substantiated this interpretation.