A qualitative metasynthesis exploring the impact of prostate cancer and its management on younger, unpartnered and gay men.

Prostate cancer (PCa) can negatively impact on men's sexual, urinary and emotional functioning, affecting quality of life. Most men with PCa are older (≥65 years), married and heterosexual and little is known about the impact on men who are younger, unpartnered or gay. We aimed to synthesise existing qualitative research on these three groups of men. A systematic metasynthesis was undertaken that included data on the unique impacts of PCa on younger (<65 years) (n = 7 papers), unpartnered (n = 17 papers) or gay or bisexual men (n = 11 papers) using a modified meta-ethnographic approach. The three overarching constructs illustrated the magnified disruption to men's biographies, that included: marginalisation, isolation and stigma-relating to men's sense of being "out of sync"; the burden of emotional and embodied vulnerabilities and the assault on identity-illustrating the multiple threats to men's work, sexual and social identities; shifting into different communities of practice-such as the shift from being part of a sexually active community to celibacy. These findings suggest that PCa can have a particular impact on the quality of life of younger, unpartnered and gay men. This has implications for the provision of tailored support and information to these potentially marginalised groups.

The effects of pelvic radiotherapy on cancer survivors: symptom profile, psychological morbidity and quality of life.

AIMS: As cancer survival rates continue to increase, it is important to maximise the quality of life of cancer survivors. Pelvic radiotherapy is a common cancer treatment. Bladder, bowel and sexual dysfunction are recognised side-effects of treatment, and yet relatively little is known of the extent to which they remain problems in the longer term when patients are often managed by primary care, nor of the psychological impact of symptoms and effects on quality of life. Therefore, the aims of this study were to estimate the prevalence of bladder, bowel and sexual dysfunction late effects in a sample of cancer survivors; assess the impact of time since treatment on symptom prevalence; and explore the relationship between symptoms, psychological morbidity and quality of life. MATERIALS AND METHODS: A questionnaire was given to a sample of cancer survivors treated in Oxford who had pelvic radiotherapy 1-11 years previously. The questionnaire measured patient-reported toxicity (Common Toxicity Criteria of Adverse Events/Late Effects of Normal Tissues--Subjective, Objective, Management and Analytic Measure), psychological morbidity (Hospital Anxiety and Depression Scale) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30). RESULTS: In total, 418 (57.1%) completed questionnaires were received. Moderate/severe problems with bowel, urinary and sexual functioning were relatively common: bowel urgency (59% women, 45% men); urine urgency (49% women, 46% men); ability to have a sexual relationship affected (24% women, 53% men). Symptoms were just as frequent in those 6-11 years after treatment as in those 1-5 years after treatment. Symptom severity was significantly associated with poorer overall quality of life and higher levels of depression. CONCLUSIONS: Late effects are common among long-term cancer survivors who have had pelvic radiotherapy, and are associated with reduced quality of life and psychological morbidity. It is imperative due attention is paid to this issue during the follow-up phase--both in secondary and primary care. Health care professionals providing follow-up care need to be aware of the importance of assessing and monitoring symptoms, and need to be adequately informed on the most appropriate management strategies.

Cancer survivors' experiences of discharge from hospital follow-up.

Discharge from hospital follow-up is a key time point in the cancer journey. With recommendations for earlier discharge of cancer survivors, attention to the discharge process is likely to become increasingly important. This study explored cancer survivors' experiences of discharge from hospital follow-up. Survivors of breast, colorectal and prostate cancer (n= 1275), 5-16 years post diagnosis were approached to take part in a questionnaire survey. The questionnaire included questions about discharge status, provision of time/information prior to discharge, feelings at discharge and satisfaction with how discharge was managed. Completed questionnaires were returned by 659 survivors (51.7%). Approximately one-third of respondents were not discharged from follow-up 5-16 years post diagnosis. Of those discharged, a substantial minority reported insufficient time (27.9%), information (24.5-45.0%) or adverse emotions (30.9%) at the time of discharge. However, 90.6% of respondents reported satisfaction with how discharge from hospital follow-up was managed. Despite high levels of satisfaction, discharge of cancer survivors from hospital follow-up could be improved with the provision of additional time, information and support. Better structuring of the final hospital appointment or a review appointment in primary care at this time could help to ensure that discharge from hospital follow-up is managed optimally for cancer survivors.

The oral health status of adults with a visual impairment, their dental care and oral health information needs.

AIM There is little information available concerning the impact of visual impairment upon oral health. The present study sought to identify the oral health and experiences of adults with a visual impairment together with the nature, source and access to oral health information. In addition the study evaluated the oral health status of a group of individuals with a visual impairment with respect to oral health markers, treatment choice and attendance patterns in comparison to a reference group from the general population in the United Kingdom. METHOD One hundred adults with a visual impairment were examined and completed a questionnaire concerning their experience of oral health care and available information sources. The information collected was directly compared with data from the Adult Dental Health Survey 1998 for the south region of England. RESULTS The present group of individuals with a visual impairment had better oral hygiene practices, and similar levels of oral hygiene and hard tissue disease to those of a comparable group of the Adult Dental Health Survey 1998 (ADHS 1998). However 24% of those with a visual impairment were not registered with a dentist and 26% of the patients wished for appropriate information concerning oral health care. CONCLUSIONS There is a need to develop oral health promotion that ensures patients with a visual impairment have appropriate information regarding oral health care and its provision.

The Opinions, Expectations and Experiences of Women with a Family History of Breast Cancer Who Consult Their GP and Are Referred to Secondary Care.

Objectives: The purpose of this work was to explore the views, expectations and experiences of the increasing number of women with a family history of breast cancer who present to their GP and are referred to secondary care. Methods: A prospective descriptive study was carried out with 193 women referred by their GP regarding a family history of breast cancer to a genetics clinic or breast clinic in Oxfordshire and Northamptonshire over a one-year period. Results: Women who presented to primary care about a family history of breast cancer wanted their GP to provide them with information (90%) and to discuss their risks of developing breast cancer (87%). Women often had unrealistic expectations of what they might expect from a referral to secondary care, especially with regards to being offered genetic testing. Within 1 month of attending the secondary care appointment, 11% of women had returned to see their GP regarding their family history and what had happened at the specialist clinic. Conclusions: Women want information and the opportunity to discuss their breast cancer family history concerns in a primary care setting. For women who are referred, information provision in primary care is important to ensure realistic expectations of the secondary care visit and to provide ongoing reassurance and support throughout the often lengthy referral process. For women who are not referred, information provision in primary care is even more important, as this may be their only source of information and advice. Copyright 2002 S. Karger AG, Basel

The 'new genetics' and primary care: GPs' views on their role and their educational needs.

BACKGROUND: Given the limited specialist resources available to cope with the rising demand for genetic services, it has been proposed that at least some of these services are provided by primary care in the future. OBJECTIVE: We aimed to explore GPs' attitudes towards new developments in genetics, to establish the role they envisage for primary care and to clearly define the education, information and training needed to support them in this role. METHODS: We carried out a qualitative study with GPs using four focus groups (26 GPs) and 15 individual semi-structured interviews. RESULTS: GPs perceive genetics as an important and increasingly relevant topic for primary care. Views on the appropriate level of involvement for primary care are mixed. GPs currently lack the relevant knowledge and skills to manage patients concerned about their family history. Other potential barriers to increasing primary care involvement included the time and costs involved, and ethical and legal concerns. CONCLUSION: If primary care is to become more involved in the delivery of genetic services in the future, then a major educational effort is required to raise awareness of the potential scope and limitations of new developments.

Food insufficiency in Queensland.

To investigate the prevalence of food insufficiency and factors associated with it, two questions assessing household and individual food insufficiency were included in 13 regional health surveys conducted in Queensland in 1993. The surveys used computer-assisted telephone interviewing methodology. Of the 10,451 people interviewed, 9.7 per cent and 6.4 per cent reported household and individual food insufficiency, respectively, and 11.3 per cent reported at least one type. Prevalence was significantly higher in women than men and in urban than rural residents, and decreased monotonically with increasing age from 16.6 per cent in 18- to 30-year-olds to 1.7 per cent in over-70-year-olds. Higher prevalence also was associated with lower income, unemployment, single or separated, divorced or widowed status versus married (or de facto), one-adult households, and shared accommodation. Lower prevalence was associated with more education in those aged 50 and under but not in those over 50 years. Using logistic regression to control simultaneously for important sociodemographic factors, we found that risk of food insufficiency was most highly associated with age and income (threefold risk), unemployment and shared accommodation (twofold risk) and one-adult households, and being single versus separated, widowed or divorced (one-and-a-half-fold risk). Some differences in risks existed between men and women and between rural and urban residents, although none excluded the role of chance. Association of the items with lower reported fruit, vegetable and meat intake, poorer health status, and greater underweight supports their validity.

Telephone administration of the SF-36 health survey: validation studies and population norms for adults in Queensland.

The Rand Corporation medical outcomes short-form 36 health survey (SF-36) is a multidimensional measure of self-perceived general health status, which has been validated in adult populations in the United States and Great Britain, and, more recently, in an Australian population. The SF-36 is increasingly being used in health outcomes research internationally, mainly as a self-administered tool, and clearly has potential for use in Australia. This study aimed to assess the acceptability, reliability and validity of telephone administration of the instrument in the Queensland adult population, and to provide reliable population norms. We report the results of a telephone survey in which we interviewed 12,793 adults. It was the first large-scale, statewide application of the SF-36 in Australia. A response rate of 82 per cent was achieved, and the SF-36 satisfied psychometric criteria for reliability and construct validity. Population norms broken down by age and sex are provided. They will be important for the interpretation of future studies using the SF-36 in particular population or patient groups.

Conducting regional health surveys using a computer-assisted telephone interviewing method.

After the creation of thirteen health regions within Queensland in 1991, the need arose for an information base at the regional level to assist regions with their role in planning, monitoring and evaluating health services. A series of regional health surveys was conducted in 1993 to provide this information, using a computer-assisted telephone interviewing method. Over 10 400 interviews were conducted throughout the state. This is the first time a computer-assisted method has been used on a large scale to collect health-related information in Australia. Interviews used list-directed or random-digit dialing, depending on the rate of unlisted numbers in a region. Response rates were not significantly different for the two methods, although the number of contactable numbers attempted and the noncontact rates were significantly higher for random-digit regions. The last-birthday method was used to select the adult for interview in each household. The method resulted in a bias toward female respondents.

Psychological and social consequences of community carrier screening programme for cystic fibrosis.

We have assessed the effect of screening for cystic fibrosis (CF) carrier status on anxiety levels, attitudes, knowledge and actions of participants in a pilot programme conducted through primary health care services. Over 3000 individuals were screened and 100 carriers with no previous family history were identified. Varying degrees of anxiety were found to be associated initially with a positive result, but most of this was allayed by genetic counselling, and we find no adverse long-term psychological consequences in carriers. Most discussed carrier status with their partner (89%), parents, other relatives and also with friends; 87% of partners to whom testing was suggested have been screened. Those testing positive indicated that knowledge of carrier status would be considered in future reproductive decisions, and after 6 months carriers retained a reasonable level of knowledge about CF and its inheritance. Carriers and non-carriers uniformly approve of screening and are glad to have been tested. Knowledge of CF in the sample of non-carriers has also increased after testing, suggesting screening may improve understanding of CF among the entire target population. Fears of possible social costs of screening may be ill-founded.

Attitudes towards prenatal diagnosis and carrier screening for cystic fibrosis among the parents of patients in a paediatric cystic fibrosis clinic.

The parents of all children attending the Royal Brompton National Heart and Lung Hospital cystic fibrosis paediatric clinic were asked to complete an anonymous postal questionnaire addressing attitudes towards prenatal diagnosis and population carrier screening for cystic fibrosis (CF); 65% (170/261) of parents responded. Of the respondents, 92% would support the introduction of a population screening test to detect carriers of CF and 19% felt such a test should be mandatory. A total of 64% of CF parents felt they would choose not to have any further children in the knowledge that they were both carriers, 74% would choose to have a prenatal test if they became pregnant, 44% would consider terminating an affected pregnancy, 33% would not, and 23% were unsure. Overall, 72% of respondents indicated they would choose to avoid having a further child with CF either by not having further children or by terminating an affected pregnancy.

Screening for carriers of cystic fibrosis through primary health care services.

OBJECTIVE: To evaluate the uptake of cystic fibrosis carrier testing offered through primary health care services. DESIGN: Carrier testing for cystic fibrosis was offered to patients of reproductive age through primary health care services. SETTING: Three general practice surgeries and four family planning clinics in South West Hertfordshire District Health Authority. SUBJECTS: Over 1000 patients aged 16-44 attending two general practices and four family planning clinics and a stratified random sample of patients aged 16-44 from one general practice's age-sex register. RESULTS: When screening was offered opportunistically the uptake was 66% in general practice and 87% in family planning clinics. Ten per cent of those offered a screening appointment by letter took up the invitation. Of the screened population, 76% had previously heard of cystic fibrosis, 35% realised it is inherited, and 18% realised that carriers need not have any family history. If they found themselves in an "at risk" partnership 39% would consider not having children and 26% would consider terminating an affected pregnancy, but in each case most people were unsure how they would react. CONCLUSIONS: Most people offered a cystic fibrosis test opportunistically wish to be tested, and the responses of those tested indicate that knowledge of carrier state would be considered in future reproductive decisions.

Attitudes to carrier screening for cystic fibrosis: a survey of health care professionals, relatives of sufferers and other members of the public.

The gene which is mutated in cystic fibrosis has now been identified, thus permitting the detection of carriers in the general population. This paper reports pilot surveys in the North West Thames region of the health service to assess knowledge of people about cystic fibrosis and their attitudes towards screening. Three groups were surveyed: a group of relatives of those with cystic fibrosis (n = 268), a sample of the community (school pupils and family planning clinic attenders, n = 363), and a group of health care professionals (general practitioners and family planning clinic staff, n = 227). The relatives of cystic fibrosis sufferers were unanimously in favour of the introduction of cystic fibrosis screening, and the results indicate that there is likely to be support from the relevant health professionals: approximately 75% of respondents in the group of health care professionals believe the introduction of screening would be worthwhile. Data from the community sample suggest that, although knowledge of cystic fibrosis within the general community is low (less than 50% of respondents realized that cystic fibrosis affects the lungs and that no cure is available), there is likely to be considerable demand for carrier testing from the general public. Approximately 75% of the community sample indicated that they would like to be tested. There was no clear consensus, either from the professionals or the public, as to the best time to offer screening.

The incidence of delta F508 CF mutation, and associated haplotypes, in a sample of English CF families.

Data are presented for delta F508 screening and KM19/XV2c haplotype analysis of 195 cystic fibrosis (CF) chromosomes from the British Caucasian population. We report the frequency of delta F508 in this group to be 80% and find pronounced disequilibrium between the deletion and the KM 2, XV 1 haplotype. Haplotype analysis of 71 normal chromosomes is also presented. We report one individual who had meconium ileus and who does not have the delta F508 mutation on either chromosome.

delta F508 frequency and associated haplotypes near the cystic fibrosis locus in the Yugoslav population.

Chromosomes from 19 unrelated Southern Yugoslav families in which cystic fibrosis (CF) occurs were analysed for the presence of the delta F508 mutation, using polymerase chain reaction amplification followed by dot blot and polyacrylamide gel analysis. Of the 38 CF chromosomes, 15 (39.5%) carry the delta F508 deletion. Restriction fragment length polymorphism haplotypes for KM19/PstI, XV2c/TaqI and J3.11/PstI marker loci were determined and are compared for a total of 34 N and 37 CF chromosomes.

Isolation of a human gene with protein sequence similarity to human and murine int-1 and the Drosophila segment polarity mutant wingless.

An expressed gene sequence which was identified by the isolation of a methylation free CpG island from human chromosome 7 has been cloned from a human lung cDNA library. The deduced protein sequence contains 360 amino acids and has several features of a secreted protein; it is cysteine rich with a signal peptide sequence and two potential asn-linked glycosylation sites. The protein sequence shows marked similarity with human and murine int-1 and their Drosophila homolog wingless (Dint-1). This human int-1 related protein, int-1 and Dint-1 have diverse patterns of expression, but the inferred structural similarities suggest that some of the functional characteristics of these proteins may be shared.