Anne Lydon

Routine follow-up after treatment for ovarian cancer in the United Kingdom (UK): patient and health professional views.

PURPOSE The aim of this study was to explore patients and health professionals perceptions of follow-up service provision following treatment for ovarian cancer. In the United Kingdom, where this study took place, ovarian cancer is the most common gynaecological cancer in women. The causes are unknown, symptoms are often vague and most cases are diagnosed at an advanced stage. There is a high likelihood of disease progression and little evidence on the benefits of routine follow-up after treatment for gynaecological cancer. METHOD Two focus groups were conducted with patients (n=6) and health professionals (n=7) at a hospital in North-West England. RESULTS From the patient group, three main themes emerged: reassurance, the need for support and information, and alternative approaches to follow-up care. Three main themes emerged from the health professional group: patient attendance at outpatient clinics to monitor for disease progression; the need to modernise the current system; and patients should be encouraged to self-manage their disease. CONCLUSIONS There were similarities and differences in perceptions of follow-up care procedures between the two focus groups. Patients placed importance on clinical examination in indicating disease recurrence, whereas health professionals viewed this as historical practice with no evidence base. Accurate information on how disease progression is monitored should be communicated to patients. A modified approach to follow-up procedures is suggested as a useful strategy to tailor services to individual needs and preferences, whilst responding to service demands.

Adherence to physical activity guidelines among cancer support group participants.

Physical activity is recommended after cancer diagnosis for physical function, quality of life and survival benefits. This study provided preliminary data on the prevalence of physical activity among adult men and women with cancer in the UK. As part of a national survey of cancer support group participation, questionnaires including items on leisure-time physical activity and demographic information were completed by 748 cancer survivors. Overall, 395 (52.8%) participants reported no weekly moderate or vigorous intensity physical activity, 221 (29.5%) reported some activity but below minimum recommendations and 132 (17.6%) were meeting published guidelines. Gender, health status and socio-economic status were independently associated with meeting guidelines. Among participants in good or fair health who were not meeting guidelines, 59.9% thought that they ought to be more physically active. In conclusion, overall levels of physical activity are low among cancer survivors in the UK. However, the majority of insufficiently active participants showed awareness of the need to increase their activity, and may be receptive to interventions for promoting physical activity in this population.

Characteristics of professionally-led and peer-led cancer support groups in the United Kingdom

IntroductionSupport group participation has various benefits for cancer survivors. This study explored the provision of support groups for cancer survivors in the United Kingdom (UK), and examined differences between professionally and peer-led groups.MethodsLeaders of cancer support groups in the UK were invited to take part in a national postal survey. Questionnaires included sections for group structure information, and leader characteristics and training needs.ResultsSurvey response was 59.6% with a total of 315 participants. Of these, 227 (72.1%) were peer-leaders, and 88 (27.9%) health-professional leaders. Peer-led groups were more likely to be run by a committee (66.1% vs 27.3%; χ2 = 38.6; p < 0.001) and provide additional activities (e.g., home visits, telephone support, social events) than professionally-led groups. There were no differences between professional and peer leaders in the number of years of support group leadership experience, and previous support group training. However, more professional leaders perceived a need for training than peer leaders (67.0% vs 48.0%; χ2 = 9.2; p = 0.002), although the types of training desired were not different.ConclusionsSupport group provision was widespread and varied in nature. Few differences were observed between peer and professional groups. More professional leaders identified training needs than peer leaders, although types of training desired were similar.Implications for cancer survivorsA wide range of support groups are available for cancer survivors in the UK. Peer-led groups are more common, and they are more likely to offer services in addition to regular meetings than professionally-led groups.

Follow-up care in cancer: adjusting for referral targets and extending choice

Background  Over recent years, several initiatives have impacted on the referral of patients to secondary care, most notably targets for urgent referral in suspected cancer and the patient choice agenda. At the same time, improved long‐term survival in cancer has increased numbers attending follow‐up, doubts about the effectiveness of specialist follow‐up have emerged, and alternative models of follow‐up have been tested.

Evaluation of a British child bereavement service: the user's perspective.

OBJECTIVE This article summarizes the findings from a 3-year independent evaluation of a regional Child Bereavement Service (CBS). The service was commissioned by a Primary Care Trust in Northern England, and funded by a British cancer charity, Macmillan Cancer Support. The need for a CBS was recognized by members of a Palliative Care Group who identified a gap in local services for bereaved children, who may be susceptible to short/long-term psychiatric/psychological disorders. The service was established to offer support for professionals working with bereaved children and their family. METHOD Interventions provided by the service included pre/post bereavement support, individual work with the child and/or family, and group work. An evaluation (2004-2007), was conducted to inform service development utilizing semi-structured interviews with parents/carers of service users (n = 20), and semi-structured interviews with healthcare professionals (n = 8). Interviews were recorded, transcribed verbatim, and analyzed using grounded theory methods. RESULTS Referrals were higher than expected. Sixty per year were anticipated; however, in the first year alone, there were 255 referrals. Health and social care professionals who attended training courses, provided by the CBS staff, expressed confidence in providing bereavement support themselves, or by making appropriate referrals to the CBS. Parents and carers welcomed a service specifically for their children. SIGNIFICANCE OF RESULTS The CBS is a viable organization that supports bereaved children as expressed in this article.