Using the Patient Concerns Inventory in the identification of fatigue following treatment for head and neck cancer.

Fatigue has a profound impact on health-related quality of life (HRQOL). The aim of this study was to describe the clinical characteristics and HRQOL of head and neck cancer patients who raised the issue of fatigue on the Patient Concerns Inventory (PCI) at their review consultation. Eight consultants were randomized to use the PCI as part of a cluster-controlled trial. Patients also completed the University of Washington Quality of Life version 4 (UWQOL), EQ-5D-5L (EuroQol Group), and Distress Thermometer questionnaires. The study included 140 patients who attended clinics at a median of 108 (interquartile range 70-165) days after the end of treatment. The PCI item 'fatigue' was the sixth most commonly selected, by 29% (n=40). Those with advanced tumours were more likely to have selected the item (30/84, 36% vs 10/56, 18%; P=0.02), as were those treated with radiotherapy±chemotherapy (34/87, 39% vs 6/53, 11%; P<0.001). The PCI fatigue group reported significantly worse overall quality of life, social-emotional and physical function composite scores (UWQOL), Distress Thermometer, and EQ-5D-5L. PCI fatigue was common in those with sleeping, nausea, mood, depression, mobility, breathing, and energy level concerns. In conclusion, given the problems associated with fatigue, it is appropriate to screen and seek interventions that might help patients address this.

Development and evaluation of a holistic surgical head and neck cancer post-treatment follow-up clinic using touchscreen technology-Feasibility study.

The efficacy of traditional follow-up care is being challenged, as cancer survivors' supportive and psychological needs are often neither identified, nor addressed. This study's aim was to develop a holistic surgical follow-up clinic for oral and oropharyngeal cancer patients were participants completed a disease-specific health-related quality of life tool (UWQOLv4) and item prompt list (Patient Concern Inventory) on a touchscreen computer. Information generated was used to focus the consultation on patient's identified needs and concerns. By means of a prospective non-randomised, pre-test post-test design, this follow-up clinic was evaluated using the patient enablement instrument (PEI) and patient content checklist (PCC). Feasibility was explored from the patient perspective (satisfaction survey) and clinician perspective (qualitative interview). Forty-four consecutive patients were recruited. Findings demonstrating five of the eight topics (overall QOL, emotions, head and neck symptoms, side-effects of treatment, chronic non-specific) on PCC were discussed more frequently, but changes were not statistically significant. The PEI highlighted a trend towards perceived improvement in four of the six items. Using touchscreen computers to aid communication during routine follow-up was reported as both feasible and beneficial by patients and clinicians. Providing a patient-focused follow-up consultation can facilitate the identification of unmet needs, permitting timely and appropriate intervention being initiated.

Fathers' experiences of living with cancer: a phenomenological study.

There is a paucity of knowledge about fathers' experiences of cancer. This study explored the experiences of fathers diagnosed and living with cancer while also having parental responsibility for children. A hermeneutic phenomenological approach guided the study. Data were generated through 22 in-depth interviews with 10 fathers throughout Northern Ireland. The findings evidenced that fathers' identities are challenged and frequently re-shaped by the cancer experience, in many cases leading to an improved lifestyle behaviour. Heightened engagement with their children can provide a protective effect from the illness. On the other hand a lack of involvement led to frustration and low mood. The findings also demonstrated that father/child relationships were adversely affected by the social complexities that exist in the variances and diversity of fathers parenting roles and status. This knowledge contributes to our understanding of the complex relationships of fathers in non-traditional roles. It extends our understanding of how, when stereotyped gendered roles are ascribed to fathers it can impact on a fathers' ability to fulfil the traditional breadwinner's role. This is knowledge that will inform health care professionals and enable them to provide gendered-sensitive care that takes account of the masculine psychological responses that can shape the cancer experience.

A national survey of healthcare professionals' views on models of follow-up, holistic needs assessment and survivorship care for patients with head and neck cancer.

Patterns of follow-up and survivorship care are changing in response to growing numbers of cancer survivors and an increasing recognition that traditional models are unsustainable and result in unmet needs. Clinicians have shown reluctance in changing conventional follow-up practices for patients with head and neck cancer. This study aimed to explore nurses' and allied health professionals' views and practices in relation to follow-up, holistic needs assessment and survivorship care in this patient group. An online survey of members of the British Association of Head and Neck Oncology Nurses was undertaken. The response rate was 43% (74 of 174). Findings revealed a range of existing models of follow-up, rehabilitation and support for people with head and neck cancer across the UK. Specialist staff were open to new models of care and to more responsibility, with adequate training and supervision. There were some gaps in the provision of comprehensive survivorship care and some specific areas of practice in which nurses lacked confidence, knowledge and skills, such as managing medications and complex symptoms. Further research is needed to develop and evaluate effective models of follow-up and support for a growing population of head and neck cancer survivors who have diverse and complex needs.

Family life when a parent is diagnosed with cancer: impact of a psychosocial intervention for young children.

When a parent is diagnosed with cancer it can have a profound impact on the family, especially the children. This paper reports on the experience of parental cancer for parents' and their children and the impact of a psychosocial intervention for young children whose parent has cancer. Using a qualitative design, data were generated from separate focus groups with children (n = 7) and parents (n = 6). One-to-one interviews were conducted with professionals delivering the intervention (n = 2). Findings indicated that parents are often the gatekeeper to how, when and the context in which children learn about parental cancer. Many parents expressed a lack of confidence and skills as they considered communicating with their children about cancer. Parents stated the need for professional input mainly due to changes in their children's behaviour. Children had a number of fantasies and misconceptions surrounding cancer. This psychological intervention normalized their experience of parental cancer. It also improved children's understanding of cancer and equipped them with coping strategies. Professionals perceived the intervention led to improved family communication and promoted discussion of emotions. Open communication is pivotal for children whose parents have cancer but parents need supported and resourced to promote family coping when diagnosed with cancer.

Patients with head and neck cancer prefer individualized cognitive behavioural therapy.

Cognitive behaviour therapy (CBT) is a widely practiced and approved form of psychotherapy for many psychosocial difficulties. As the efficacy of CBT is recognized, its demand has increased and today exceeds the availability of qualified practitioners. Therefore, the effectiveness of delivering CBT using less labour-intensive modes than individualised therapy has been explored. These include group therapy, bibliotherapy and computer assisted therapy. Given the UK Government's impetus towards patient choice and involvement in the planning of healthcare, it was thought essential to ascertain the preferred delivery mode of patients with head and neck cancer for a CBT based intervention. Therefore, a small retrospective cohort (n= 28) of patients following treatment for head and neck cancer were sent postal questionnaires to ascertain their preferences on mode of CBT delivery. Simultaneously, the views of accredited cognitive behaviour therapists (n= 14) were determined on the optimal mode of CBT delivery to these patients. Findings indicated that patients preferred the more individualized mode of CBT delivery, namely one-to-one therapy, followed closely by bibliotherapy, with group format being the least preferred option. Professionals concurred with patients, in that one-to-one interaction was considered an optimal mode of CBT delivery, but professionals considered it equal to group therapy.