RESUMO
BACKGROUND: Caregiver burden is documented in several chronic diseases, but it has not been investigated in celiac disease (CD). AIMS: We aim to quantify the burden to partners of CD patients and identify factors that affect the perceived burden. METHODS: We surveyed patients with biopsy-proven CD and their partners. Patients completed CD-specific questions, including the validated Celiac Symptom Index (CSI) survey. Partners completed the validated Zarit Burden Interview (ZBI) and questions regarding sexual and relationship satisfaction. Univariable and multivariable analyses were used to assess the association between demographics, CD characteristics, and partner burden. RESULTS: In total, 94 patient/partner pairs were studied. Fifteen patients (16 %) reported a CSI score associated with a poor quality of life, and 34 partners (37 %) reported a ZBI score corresponding to mild-to-moderate burden. Twenty-two partners (23 %) reported moderate-to-low overall relationship satisfaction, and 12 (14 %) reported moderate-to-low sexual satisfaction. The degree of partner burden was directly correlated with patient CSI score (r = 0.27; p = 0.008), and there were moderate-to-strong inverse relationships between partners' burden and relationship quality (r = -0.70; p < 0.001) and sexual satisfaction (r = -0.42; p < 0.001). On multivariable logistic regression, predictors of mild-to-moderate partner burden were low partner relationship satisfaction (OR 17.06, 95 % CI 2.88-101.09, p = 0.002) and relationship duration ≥10 years (OR 14.42, 95 % CI 1.69-123.84, p = 0.02). CONCLUSIONS: Partner burden is common in CD, with more than one-third of partners experiencing mild-to-moderate burden. Partner burden is directly correlated with patient symptom severity, and it increases with poorer sexual and relationship satisfaction. Healthcare providers should address relationship factors in their care of patients with CD.
Assuntos
Doença Celíaca/dietoterapia , Satisfação Pessoal , Qualidade de Vida , Cônjuges , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Doença Celíaca/fisiopatologia , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Relações Interpessoais , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Cooperação do Paciente , Índice de Gravidade de Doença , Comportamento Sexual , Fatores de Tempo , Adulto JovemRESUMO
BACKGROUND: Colorectal Cancer (CRC) is rapidly rising in Asia, but screening uptake remains poor. Although studies have reported gender differences in screening rates, there have been few studies assessing gender specific perceptions and barriers towards CRC screening, based on behavioral frameworks. We applied the Health Belief Model to identify gender-specific predictors of CRC screening in an Asian population. METHODS: A nationwide representative household survey was conducted on 2000 subjects aged 50 years and above in Singapore from 2007 to 2008. Screening behaviour, knowledge and beliefs on CRC screening were assessed by face-to-face structured interviews. The response rate was 88.2%. RESULTS: 26.7 percent had undergone current CRC screening with no gender difference in rates. Almost all agreed that CRC would lead to suffering (89.8%), death (84.6%) and would pose significant treatment cost and expense (83.1%). The majority (88.5%) agreed that screening aids early detection and cure but only 35.4% felt susceptible to CRC. Nearly three-quarters (74.3%) of the respondents recalled reading or hearing information on CRC in the print or broadcast media. However, only 22.6% were advised by their physicians to undergo screening. Significantly more women than men had feared a positive diagnosis, held embarrassment, pain and risk concerns about colonoscopy and had friends and family members who encouraged screening. On multivariate analysis, screening uptake showed a positive association with worry about contracting CRC and a physician's recommendation and a negative association with perceived pain about colonoscopy for both genders. For women only, screening was positively associated with having attended a public talk on CRC and having a family member with CRC, and was negatively associated with Malay race and perceived danger of colonoscopy. CONCLUSIONS: CRC screening remains poor despite high levels of awareness of its benefits in this Asian population. Race, worry about contracting cancer, psychological barriers, and cues from the doctor and a public talk on CRC were associated with screening with gender specific differences. Strategies to increase CRC screening uptake should consider gender specific approaches to address psychological barriers and increase disease susceptibility through public health education and active promotion by physicians.
Assuntos
Neoplasias Colorretais/diagnóstico , Conhecimentos, Atitudes e Prática em Saúde , Programas de Rastreamento/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso , Idoso de 80 Anos ou mais , Distribuição de Qui-Quadrado , Neoplasias Colorretais/etnologia , Neoplasias Colorretais/prevenção & controle , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Programas de Rastreamento/estatística & dados numéricos , Pessoa de Meia-Idade , Modelos Psicológicos , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Fatores Sexuais , Singapura , Classe Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND & AIMS: Studies have described the burden experienced by caregivers and next of kin to patients with diseases such as cancer. However, the burden of functional gastrointestinal disorders on partners of patients has not been determined. We aimed to quantify the degree of burden to partners of patients with irritable bowel syndrome (IBS), to describe the factors that affect the burden perceived, and to identify the areas of relationship that are affected. METHODS: We surveyed 152 patients diagnosed with IBS at a tertiary gastrointestinal clinic, on the basis of Rome III criteria, and their partners. Their partners completed questionnaires including the Zarit Burden Interview (ZBI), Relationship Satisfaction Scale, and questions on sexual relationships. Patients with IBS were rated for disease severity by using the Functional Bowel Disease Severity Index. We compared findings with those from 39 partners of healthy individuals (controls). RESULTS: There were no significant demographic differences between the partners of patients with IBS and controls; demographics had no effect on burden. Burden was significantly higher among partners of IBS patients (mean ZBI score, 22.1) than controls (mean ZBI score, 11.5) (P = .0002). The degree of burden was directly related to IBS severity (P < .0001). There were inverse relationships between partners' rating of burden (ZBI) and relationship quality (R = -0.60; P < .001) and sexual satisfaction (R = -0.56; P < .0001). There was no difference in the Relationship Satisfaction Scale scores (4.25 vs 4.19; P = .78) or sexual relationship (6.47 vs 6.21; P = .64) between partners of IBS patients and controls, respectively. CONCLUSIONS: Partners of patients with IBS have a significant burden (on the basis of ZBI score), compared with partners of healthy individuals. Perceived burden increases with IBS severity and poorer sexual and relationship satisfaction.
Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Família/psicologia , Síndrome do Intestino Irritável/epidemiologia , Adulto , Idoso , Estudos de Casos e Controles , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Cidade de Roma , Inquéritos e QuestionáriosRESUMO
Physician accessibility, for example how available a doctor should be by cell phone or e-mail is an important issue that is not well understood. There can be large differences between the expectations of patients and the perspective of their providers. The rationale for providing accessibility has historical roots and relates to the very basis of the physician-patient relationship and the effects on patient outcomes. While patients may want this line of communication, physicians may worry about disruption from unexpected phone calls, being requested to provide advice without access to records and providing services without adequate remuneration among other concerns. Herein, we discuss the rationale for these concerns, and provide suggestions on how we might overcome them. We suggest a framework with guidelines on establishing and maintaining remote accessibility with patients in the context of a productive physician-patient relationship.