Unmet psychological and practical needs of patients with cancer in rural and remote areas of Western Australia

The financial and psychological impacts of cancer treatment on patients can be severe. Practical issues, such as childcare, medical supplies and obtaining ‘home help’ can impose financial strain on patients and their families, and this is often exacerbated by a simultaneous loss of income if a patient is unable to continue employment during treatment, or if family members become full-time carers. These financial difficulties are often more severe for patients from rural regions because cancer services tend to be concentrated in metropolitan areas, requiring rural patients to relocate or undertake lengthy, frequent commutes to access treatment. The needs of rural cancer patients may differ from and exceed those of metropolitan cancer patients. Because of this, it is important to assess the needs of rural and metropolitan populations to develop appropriate, tailored supportive-care interventions. This article compares the unmet supportive-care needs of rural/remote with metropolitan cancer patients in Western Australia (WA), a large and sparsely populated Australian state with a substantial rural and remote population. This article is part of a larger program of research assessing the supportive-care needs of WA cancer patients.Methods: Participants were identified through the Western Australian Cancer Registry (WACR) and considered eligible if diagnosed with any type of cancer between 6 months and 2 years previously. A random sample of 2079 potential participants was generated, structured to include all cancer types and geographical areas, and with both sexes randomised within these groups. Following confirmation and exclusion of deceased patients and those patients excluded at the treating doctor’s request, 1770 patients were contacted. Participants were asked to complete a demographic questionnaire and the Supportive Care Needs Survey Long Form (SCNS-59). Data from participants who completed and returned both questionnaires were analysed using descriptive statistics and χ2 tests; and any missing data were addressed through imputation.Results: Eight hundred and twenty-nine participants (47% response) completed the SCNS-LF59 and 786 (94.8%) completed both questionnaires. Of the 786 respondents, 234 (30%) were from rural areas and 169 (22%) were from remote areas. Among the 15 items with the highest frequency for ‘some needs’ on the survey, participant needs did not vary by geographical location, with no significant differences found for any of the 15 items. The item for which the greatest, albeit non-significant (p = 0.12) difference was seen, was ‘concern about financial situation’. The differences among all other items were not significant (p-values from 0.28 to 0.96). Furthermore, the proportion of participants reporting ‘moderate to high need’ on these items also did not differ significantly across geographical populations (p-values from 0.13 to 0.91).Conclusions: The lack of discrepancy between rural, remote and metropolitan cancer patients’ unmet needs provides a positive message regarding the state of WA cancer services and the level of support provided to rural and remote WA residents. Future research should also assess the unmet needs of rural and remote carers and families in comparison with metropolitan carers and families, to ensure that services are well-equipped to meet the needs of all individuals involved in a patient’s cancer journey

Examining the Relationship Between Genetic Counselors’ Attitudes Toward Deaf People and the Genetic Counseling Session

Given the medical and cultural perspectives on deafness it is important to determine if genetic counselors’ attitudes toward deaf people can affect counseling sessions for deafness genes. One hundred fifty-eight genetic counselors recruited through the National Society of Genetic Counselors Listserv completed an online survey assessing attitudes toward deaf people and scenario-specific comfort levels discussing and offering genetic testing for deafness. Respondents with deaf/Deaf friends or who work in prenatal or pediatric settings had more positive attitudes toward deaf people than those without deaf/Deaf friends or those working in ‘other’ settings. More positive attitudes toward deaf people correlated with higher comfort level talking about genetic testing for the two scenarios involving culturally Deaf clients; and correlated with higher comfort level offering genetic testing to culturally Deaf clients wishing to have a deaf child. Attitudes and comfort level were not correlated in the scenarios involving hearing or non-culturally deaf clients. These results suggest that genetic counselors’ attitudes could affect information provision and the decision making process of culturally Deaf clients. Cultural sensitivity workshops in genetic counseling training programs that incorporate personal interactions with culturally Deaf individuals are recommended. Additional suggestions for fostering personal interactions are provided

Protocol for north of England and Scotland study of tonsillectomy and adeno-tonsillectomy in children (NESSTAC). A pragmatic randomised controlled trial comparing surgical intervention with conventional medical treatment in children with recurrent sore throats

BACKGROUND: Uncertainties surrounding the effectiveness and cost-effectiveness of childhood tonsillectomy for recurrent sore throat led the NHS Health Technology Assessment Programme to commission this research to evaluate the effectiveness and cost-effectiveness of tonsillectomy and adeno-tonsillectomy in comparison with standard non-surgical management in children aged under 16 with recurrent throat infections. The aim is to evaluate if tonsillectomy and adeno-tonsillectomy reduces the number of episodes of sore throats among children to a clinically significant extent. METHODS/DESIGN: A simple prospective pragmatic randomised controlled trial with economic analysis and prospective cohort study of non-trial participants comparing surgical intervention with conventional medical treatment. The treatment arm will receive tonsillectomy and adeno-tonsillectomy while in the control arm non-surgical conventional medical treatment only will be used. The primary outcome measure will be reported number of episodes of sore throat over two years with secondary outcomes measures of reported number of episodes of sore throat, otitis media and upper respiratory tract infection which invoke a GP consultation; reported number of symptom-free days; reported severity of sore throats and surgical and anaesthetic morbidity. The study will take place in five hospitals in the UK. The trial population will be 406 children aged 4–15 on their last birthday with recurrent sore throat referred by primary care to the 5 otolaryngology departments. The duration of the study is seven years (July 2001- July 2008). DISCUSSION: As with all pragmatic randomised controlled trials it is impossible to control the external environment in which the research is taking place. Since this trial began a number of factors have arisen which could affect the outcome including; a reduction in the incidence of respiratory tract infections, marked socio-economic differences in consultation rates, the results from the National Prospective Tonsillectomy Audit and the Government's waiting list initiatives