Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: a qualitative study.

OBJECTIVE: Genetic testing and colonoscopy is recommended for people with a strong history of colorectal cancer (CRC). However, families must communicate so that all members are aware of the risk. The study aimed to explore the factors influencing family communication about genetic risk and colonoscopy among people with a strong family history of CRC who attended a genetic clinic with a view to having a genetic test for hereditary non-polyposis colon cancer (HNPCC). METHODS: Interviews were held with 30 people with a high familial risk of colon cancer. The transcripts were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. RESULTS: The family context, family history and perceptions about family duties and responsibilities were important motivators for communication about risk, genetic testing and colonoscopy and influenced participation in genetic testing and screening programmes. Participants reported usually communicating openly with their relatives about genetic risk and colonoscopy. Individuals felt a duty towards affected relatives and to their own children. The influence of the spouse and other relatives, particularly those affected by CRC, was also important. Colonoscopy was perceived to be embarrassing, unpleasant and sometimes painful. While there was sometimes anxiety about the result of the colonoscopy the results were usually reassuring. CONCLUSIONS: The family context and the experience of the family history can have an impact on communication, genetic testing and screening in HNPCC and this should be explored during counselling. Some individuals might benefit from support in communicating with relatives about genetic risk. Ways of improving the individual's experience of colonoscopy should also be examined.

Subtypes of depression in a nationally representative sample.

BACKGROUND: Continued research efforts aim to elucidate the heterogeneity in depression. The identification of meaningful and valid subtypes has implications for research and clinical practice. Based on patterns of depressive symptomatology, this study identified a typology of depressive syndromes using data from a large, nationally representative survey. METHODS: Analyses were based on a subsample of 12,180 respondents from the 2001-2002 Wave of the National Epidemiologic Survey on Alcohol and Related Conditions (NESARC). Latent class analysis was applied to the DSM-IV 'A' criteria for major depression to identify homogenous subtypes or classes of depressive syndromes. Associations between the emergent latent classes and demographic and clinical characteristics were assessed. RESULTS: Three clinically relevant subtypes were identified, in addition to a class who reported few depressive symptoms: severely depressed (40.9%), psychosomatic (30.6%), cognitive-emotional (10.2%) and non-depressed (18.3%). The odds of experiencing negative life events, psychiatric disorders, and having a family background of major depression were significantly higher for the severely depressed, psychosomatic and cognitive-emotional classes, compared to the non-depressed class. Several unique differences between the latent classes also emerged. LIMITATIONS: Methodological shortcomings included: reliance on lay interviewer-administered structured interviews to determine diagnoses; basing sample selection on the endorsement of screener items; and, using measures of 'any anxiety disorder', 'any mood disorder', and 'any personality disorder' to determine psychiatric disorder prevalence rates. CONCLUSIONS: Significant heterogeneity in depressive symptomatology exists in this U.S. sample. Profiling symptom patterns is potentially useful as a first step in developing tailored intervention and treatment programmes.

Assessing the general health of diagnostic orphans using the Short Form Health Survey (SF-12v2): a latent variable modelling approach.

AIMS: Research has demonstrated that diagnostic orphans (i.e. individuals who experience only one to two criteria of DSM-IV alcohol dependence) can encounter significant health problems. Using the SF-12v2, this study examined the general health functioning of alcohol users, and in particular, diagnostic orphans. METHODS: Current drinkers (n = 26,913) in the National Epidemiologic Survey on Alcohol and Related Conditions were categorized into five diagnosis groups: no alcohol use disorder (no-AUD), one-criterion orphans, two-criterion orphans, alcohol abuse and alcohol dependence. Latent variable modelling was used to assess the associations between the physical and mental health factors of the SF-12v2 and the diagnosis groups and a variety of background variables. RESULTS: In terms of mental health, one-criterion orphans had significantly better health than two-criterion orphans and the dependence group, but poorer health than the no-AUD group. No significant differences were evident between the one-criterion orphan group and the alcohol abuse group. One-criterion orphans had significantly poorer physical health when compared to the no-AUD group. One- and two-criterion orphans did not differ in relation to physical health. CONCLUSION: Consistent with previous research, diagnostic orphans in the current study appear to have experienced clinically relevant symptoms of alcohol dependence. The current findings suggest that diagnostic orphans may form part of an alcohol use disorders spectrum severity.

General Practitioners involvement in enteral tube feeding at home: a qualitative study.

BACKGROUND: Complex medical treatment is moving from hospital to primary care and General Practitioners (GPs) are increasingly asked to undertake new roles. There are now an estimated 19,500 patients being fed in the UK in the community on enteral tube feeding using a variety of different feeding tubes (Percutaneous endoscopic gastrostomy (PEG), Jejunostomy, or nasogastric (NG). The majority of patients are over the age of 65 years when they had artificial feeding initiated and mainly because of dysphagia. The aim of this study was to explore GPs knowledge, attitudes and skills relating to enteral feeding in the community. METHODS: Semi-structured one-to-one interviews with a convenience sample of GPs in Northern Ireland. RESULTS: Twenty-three GPs in three health boards in Northern Ireland participated in the study. Most found dealing with enteral feeding to be a predominantly negative experience. They had little involvement in patient selection for the procedure and poor or no discharge information. GPs felt inadequately trained, there was poor communication between primary and secondary care and little support. There was anger and frustration among GPs about lack of resources (funding and training), and the perception that primary care was used as a dumping ground. CONCLUSION: Moving complex medical treatment from secondary to primary care has major implications for GPs who should be included in the patient selection process, have adequate discharge information about their patients, be adequately resourced and have appropriate support and training.

Cancer genetics: consultants' perceptions of their roles, confidence and satisfaction with knowledge.

RATIONALE, AIMS AND OBJECTIVES: Genetic testing for susceptibility for common cancers is widely available. Cancer specialists and specialists in other areas may have a role in identifying and referring patients who would benefit from a consultation with a specialist in genetics. This study aimed to find out which consultants believed that genetic testing was relevant to their practice. We also wanted to determine their views of their roles in relation to genetic testing, their confidence in these roles, and the value of different educational tools. METHODS: This was a self-completed, cross-sectional, postal survey of all the consultants in Northern Ireland (n=520, response rate=59.3%) identified from the Central Services Agency list. RESULTS: Three hundred and ninety questionnaires were returned (44%). A total of 28.6% did not complete the questionnaire stating that genetics was not relevant to their practice. Few consultants reported having consultations related to genetic disease, receiving training in genetics and referring to genetics services. There was some dissatisfaction with their current knowledge of genetics and they believed that guidelines and educational tools may be useful. The respondents lacked confidence in undertaking some of their roles. Through their responses to the cancer scenarios, these consultants showed that they would offer appropriate advice and referrals. Many consultants did not know if family history information should be provided to insurance companies. CONCLUSIONS: Some consultants may require further training to enable them to fulfil their roles in relation to genetics. Tools or guidelines to assist with referral decisions may also be useful. Consultants may need clearer guidance regarding the provision of family history information to insurance companies.

The challenges associated with providing community care for people with complex needs in rural areas: a qualitative investigation.

The aim of the present study was to explore the experiences of recipients and providers of community care in rural areas in Northern Ireland. Additionally, the authors sought to examine the impact of location, housing and environmental factors on the delivery of community care to older people with complex needs. Individual, semistructured interviews were held with service users (n = 17) and family carers (n = 14). Individual and focus group interviews were conducted with care assistants, health and social care professionals, and senior managers from a large health and social care trust and health and social services board in Northern Ireland. The importance of enabling older people to remain in their own homes and communities was emphasised by all participants. The main challenges associated with care provision in rural areas included: difficulties recruiting care assistants; lack of choice of care assistants; isolation; travel and distance between clients and their care assistants; and poor housing conditions. There was a general consensus among participants that the effectiveness of rural community care was perceived to be reliant upon the goodwill of the community. Additionally, changing demographic trends and the predicted shortfall in the number of formal and informal carers were considered key issues for service planners. A number of creative strategies could be used to address many of the limitations associated with rural isolation. These should involve capitalising on available community networks. However, planners should also acknowledge that additional resources are required to maintain older people in rural communities.

Perceived interprofessional barriers between community pharmacists and general practitioners: a qualitative assessment.

BACKGROUND: There have been calls for greater collaboration between general practitioners (GPs) and community pharmacists in primary care. AIM: To explore barriers between the two professions in relation to closer interprofessional working and the extension of prescribing rights to pharmacists. DESIGN OF STUDY: Qualitative study. SETTING: Three locality areas of a health and social services board in Northern Ireland. METHOD: GPs and community pharmacists participated in uniprofessional focus groups; data were analysed using interpretative phenomenology. RESULTS: Twenty-two GPs (distributed over five focus groups) and 31 pharmacists (distributed over six focus groups) participated in the study. The 'shopkeeper' image of community pharmacy emerged as the superordinate theme, with subthemes of access, hierarchy and awareness. The shopkeeper image and conflict between business and health care permeated the GPs' discussions and accounted for their concerns regarding the extension of prescribing rights to community pharmacists and involvement inextended services. Community pharmacists felt such views influenced their position in the hierarchy of healthcare professionals. Although GPs had little problem in accessing pharmacists, they considered that patients experienced difficulties owing to the limited opening hours of pharmacies. Conversely, pharmacists reported great difficulty in accessing GPs, largely owing to the gatekeeper role of receptionists. GPs reported being unaware of the training and activities of community pharmacists and participating pharmacists also felt that GPs had no appreciation of their role in health care. CONCLUSION: A number of important barriers between GPs and community pharmacists have been identified, which must be overcome if interprofessional liaison between the two professions is to be fully realised.

The role of an outreach oncology nurse practitioner: a case study evaluation.

Nurses have an extensive input into the care of cancer patients both in hospital and in the community and are central to the current movement to improve and streamline cancer services. Internationally there has been a move to employ highly skilled nurse practitioners in cancer care. This paper describes a single case study evaluating the role and work of an Oncology Nurse Practitioner (ONP). Multiple sources of data were used. Stage One involved collecting descriptive information about the post holder, her role and the types of patients cared for. Stage Two used a qualitative approach to explore how the post was established, its key features, its perceived advantages and disadvantages and the factors influencing its success. Findings show that all participants viewed the post positively and that such nurses can provide high-quality services in remote rural areas. The study found that to be successful the post holder needs appropriate personal attributes such as flexibility and communication skills and the ability to work independently as well as part of a team. The limitations of this study and the implications for the further development of nursing roles in oncology are discussed.

Exercise and Auricular Acupuncture for Chronic Low-back Pain: A Feasibility Randomized-controlled Trial.

OBJECTIVES: To evaluate the feasibility of a randomized-controlled trial (RCT) investigating the effects of adding auricular acupuncture (AA) to exercise for participants with chronic low-back pain (CLBP). METHODS: Participants with CLBP were recruited from primary care and a university population and were randomly allocated (n=51) to 1 of 2 groups: (1) "Exercise Alone (E)"-12-week program consisting of 6 weeks of supervised exercise followed by 6 weeks unsupervised exercise (n=27); or (2) "Exercise and AA (EAA)"-12-week exercise program and AA (n=24). Outcome measures were recorded at baseline, week 8, week 13, and 6 months. The primary outcome measure was the Oswestry Disability Questionnaire. RESULTS: Participants in the EAA group demonstrated a greater mean improvement of 10.7% points (95% confidence interval, -15.3,-5.7) (effect size=1.20) in the Oswestry Disability Questionnaire at 6 months compared with 6.7% points (95% confidence interval, -11.4,-1.9) in the E group (effect size=0.58). There was also a trend towards a greater mean improvement in quality of life, LBP intensity and bothersomeness, and fear-avoidance beliefs in the EAA group. The dropout rate for this trial was lower than anticipated (15% at 6 mo), adherence with exercise was similar (72% E; 65% EAA). Adverse effects for AA ranged from 1% to 14% of participants. DISCUSSION: Findings of this study showed that a main RCT is feasible and that 56 participants per group would need to be recruited, using multiple recruitment approaches. AA was safe and demonstrated additional benefits when combined with exercise for people with CLBP, which requires confirmation in a fully powered RCT.

Treatment-seeking behaviours for depression in the general population: results from the National Epidemiologic Survey on Alcohol and Related Conditions.

BACKGROUND: In light of the public health and clinical significance of major depression, treatment utilisation is an important issue. Epidemiological data is particularly useful for yielding accurate estimates of national trends; assessing unmet need in the population; and, informing mental health policy and focused planning of public health prevention and intervention programs. METHODS: Based on data from the 2001-2002 National Epidemiologic Survey on Alcohol and Related Conditions (NESARC), latent class analysis (LCA) was used to empirically identify and validate a typology of treatment-seeking behaviours for depression. Analyses were based on a subsample of individuals with a lifetime diagnosis of major depressive disorder (MDD). RESULTS: A three-class solution emerged as the best-fitting model. The classes were labelled highly active treatment-seeking, partially active treatment-seeking, and inactive treatment-seeking. The classes were validated by reference to predisposing, enabling, and need factors associated with treatment utilisation. LIMITATIONS: Since information was retrieved by retrospective self-report it was not possible to corroborate information on treatment utilisation or medical conditions with independent clinical or administrative records. Reporting bias and recall error therefore cannot be ruled out. Also, given that the NESARC utilised lay interviewer-administered structured interviews to determine mental health diagnoses, one should be mindful that diagnoses are epidemiological research diagnoses rather than clinician diagnoses. CONCLUSIONS: This study demonstrated the utility of LCA for identifying clinically meaningful subgroups of treatment-seeking behaviour.

Impact of community care in enabling older people with complex needs to remain at home.

Aim. This aim of the study was to explore the impact of community care in enabling older people with complex needs to remain at home. Background. Changing demographic trends and successive government policies have led to an increase in the number of older people with complex needs residing in the community. Design. A qualitative approach using semi-structured interviews was used to collect data from older people (n = 17) and carers (n = 14). Method. Social workers were asked to identify community dwelling older people (65+ years) with multiple needs requiring interventions from a range of health and social care practitioners. Results. Community care enabled older people with complex needs who would otherwise have required residential or nursing home care to remain in their own homes. This was the expressed wish of both the older people and carers interviewed. Conclusions. The provision of high-quality community care for older people is a globally significant challenge and one that requires creative solutions, both at a local and strategic level. Relevance to clinical practice. Nurses and other health and social care professionals need to understand the significance of 'home' for older people and take steps to ensure that additional and appropriate resources are targeted towards community care.

Diagnostic orphans: comparing self-report lifetime course to groups with DSM-IV alcohol abuse and dependence.

Research has highlighted the significant alcohol symptoms and mental health problems experienced by diagnostic orphans - individuals who experience 1-2 criteria of DSM-IV alcohol dependence but do not meet the criteria for a DSM-IV alcohol use disorder. This study used a sub-sample (n=34827) from the National Epidemiologic Survey on Alcohol and Related Conditions (NESARC), and formed mutually exclusive groups to compare the self-report retrospective course of diagnostic orphans to individuals with DSM-IV abuse and dependence. Multinomial logistic regressions were conducted to examine the associations between the groups and a range of demographic and clinical variables. Collectively, the findings demonstrate that diagnostic orphans shared similar characteristics to the abuse and dependence groups, but appeared to experience specific comorbid mental health problems. Orphan status has the potential to be a persistent condition and may result in significant dysfunction. In conclusion, diagnostic orphans represent a distinct group that may benefit from cost-effective treatment or intervention, designed to prevent the escalation of alcohol symptoms.

Characteristics of DSM-IV alcohol diagnostic orphans: drinking patterns, physical illness, and negative life events.

BACKGROUND: Interest in subthreshold psychiatric disorders has increased recently. Diagnostic orphans experience one to two criteria of alcohol dependence but do not meet the diagnostic criteria for a DSM-IV alcohol use disorder (AUD). This study investigated the impact of subthreshold alcohol symptoms on three domains: physical illness, drinking patterns, and the occurrence of negative life events. METHOD: Current drinkers (n=26,946) in the National Epidemiologic Survey on Alcohol and Related Conditions (NESARC) were divided into five diagnosis groups: no-AUD; one-criterion orphans (reference group), two-criterion orphans, alcohol abuse, and alcohol dependence. Exploratory factor analysis examined the factor structure of items in the Alcohol Use Disorders and Associated Disabilities Interview Schedule (AUDADIS-IV) relating to each life domains. Factors were related to the diagnosis groups and background covariates using latent variable modeling. RESULTS: One-criterion orphans did not differ from the other groups with regards to physical illness. One- and two-criterion orphans differed significantly in relation to drinking patterns, with the latter group engaging in hazardous drinking behaviours more frequently. The dependence group were more likely to experience higher estimates of social problems compared to one-criterion orphans. One-criterion orphans were more likely than the abuse group to experience financial problems but less likely than the dependence group to experience family-related legal problems. CONCLUSIONS: Diagnostic orphans were more impaired than those with no-AUD or alcohol abuse in specific life domains; however, diagnostic orphans were significantly less impaired than those with alcohol dependence. Diagnostic orphans may be an important group for early case identification and intervention.

Genetic consultations in primary care: GPs' responses to three scenarios.

OBJECTIVE: This study investigated general practitioners' responses to three scenarios in which patients consulted regarding genetic conditions. DESIGN: Self-completed postal study. Setting. Primary care in Northern Ireland. SUBJECTS: Questionnaire were distributed to all the GPs in Northern Ireland (n = 1079). A total of 541 GPs participated (50%). MAIN OUTCOME MEASURES: Responses to three scenarios in which patients consulted regarding their family history and risk of bowel cancer, breast cancer, and cystic fibrosis. RESULTS: Most GPs correctly identified the patients' risk of bowel cancer, recommended regular colonoscopy, advised lifestyle changes, and did not refer to the genetic clinic. GPs who were qualified for longer were more likely to recommend colonoscopy and less likely to advise lifestyle changes. With the breast cancer patient GPs adopted a cautious approach; most would refer to the genetic and mammography clinics. With the cystic fibrosis example, most correctly identified the patient's risk of carrying the gene, would refer to the genetic clinic, and would encourage the patient to discuss the risk with his partner. In general, doctors were unsure, but would pass on genetic information to insurance companies if requested. CONCLUSION: The study suggests that, in most cases, general practitioners correctly identify at-risk individuals but there may still be some uncertainty regarding referrals. The results suggest that ways of educating GPs should be explored. Educational interventions should be linked to a greater understanding of factors involved in referral (including the influence of gender and experience). The guidelines provided to GPs in relation to the provision of genetic information to insurance companies may need to be reviewed in some countries.

Genetics and genetic testing: are GPs likely to attend training courses?

BACKGROUND: GPs must make difficult screening and diagnostic decisions regarding genetic testing for different cancers. Educational programs may improve knowledge and enable more appropriate referral. METHODS: A postal survey of all general practitioners (GPs) in Northern Ireland (N = 534; response rate = 49.4%) asked GPs if they would attend 3 different types of training courses in genetics. RESULTS: Almost 75% indicated that they would be likely and/or very likely to attend such courses. Women and GPs who had been qualified recently were most likely to attend (P < .005, P < .05). CONCLUSION: The results suggest that GPs are interested in training courses. Male GPs and GPs who have been qualified for longer should be specifically targeted.