No abstract

Purpose. We report on the quality of life following treatment for a malignant primary bone tumour around the knee in skeletally immature children.Patients. Patients (n = 41; mean age = 18 years; range 8-28) had all experienced chemotherapy in a neo-adjuvant setting, surgical excision of the tumour and endoprosthetic replacement.Methods. Interviews were conducted separately with the child and mother and focused on mobility, body image and the impact of treatment on schooling, employment and plans for the future.Results. Mobility in the group was variable. Only 12% reported that they could run with any confidence. The proportion who were able to swim (49%) or ride a bike (46%) was higher. All had experienced major disruption in schooling (mean absence following diagnosis = 12 months). Eight had repeated a school year and 41% patients reported that their schoolwork was affected. As a result of their experience, eight (six females and two males) chose health-related employment. Concerns for the future were highest among males and those with manual jobs. Three patients were receiving psychiatric support, in relation to extreme concern about the risk of recurrence. All expressed satisfaction with treatment, and older patients believed that the prosthesis gave a better quality of life than amputation.Discussion. Our data suggest that outcome following limb-salvage surgery is variable. Education is disrupted. Even so, only two left school with no qualifications. Employment is most restricted among males with few qualifications who may benefit from sensitive vocational counselling.

Our purpose is to report the development and psychometric properties of a generic computer‐delivered measure of health‐related quality of life (HRQL) suitable for children aged 6 to 11 years, the Exeter HRQL scale (EHRQL). The theoretical model adopted is based on a definition of HRQL which assumes that HRQL is the result of discrepancies between an individual's actual self and ideal self. The EHRQL consists of 16 pictures, each of which is rated twice, first in terms of “like me” and second as “I would like to be”. The difference between these scores is assumed to be indicative of HRQL. The EHRQL is delivered using a Macintosh Powerbook and takes approximately 20 min. Data are reported for 60 children with asthma (mean age = 8.93 years) and 69 healthy children (mean age = 7.49 years). In addition, children with asthma completed the Childhood Asthma Questionnaire (CAQ) and a measure of self‐efficacy. For children with asthma, significant correlations were found between discrepancy scores and 3 of the 4 subscales of the CAQ. In addition, higher discrepancies were found for children with asthma compared with healthy children (p < 0.05). The EHRQL has acceptable internal reliability, and these data provide preliminary support for the theoretical assumption that HRQL reflects perceived discrepancies between an individual's actual self and ideal self. The measure also distinguished, as predicted, between children with asthma and healthy children. Methodological refinements to the EHRQL are suggested. Int. J. Cancer Suppl. 12:87–90, 1999. ©1999 Wiley‐Liss, Inc.

Interpretative Phenomenological Analysis of community experiencePurpose: This paper presents an in-depth, idiographic study examining the lived experience of chronic pain following spinal cord injury (SCI). Neuropathic pain (NP) occurs in a large majority of the SCI population and is particularly intractable to treatment. It can be both psychologically and physically debilitating. This study examines how the experience of NP is mediated by its meaning to the sufferer.Method: Semi-structured interviews were conducted with eight people with SCI and chronic NP, attending outpatient clinics at a specialist SCI Centre in the UK. Verbatim transcripts were subjected to interpretative phenomenological analysis in order to further understand the experience.Results: Analysis suggested that NP has powerful consequences upon the sufferer's physical, psychological, and social well-being, in line with a biopsychosocial understanding of pain. Three super-ordinate themes were identified: a perceived gap between treatments received and participants' views of what they wanted and needed; a fight for life control and acceptance; and feeling understood by others with SCI, but isolated from the non-understanding able-bodied. Conclusions:The results are discussed in terms of the possible application of acceptance-based therapy to NP and the potential for the alleviation of the debilitating consequences of NP.

Objectives: To explore the feasibility and efficacy of web-based mindfulness training for carers of people with spinal cord injury (SCI). Design: Randomized controlled feasibility study with three-month follow-up. Setting: Community setting. Participants: Spouses/family caregivers of people with SCI and chronic neuropathic pain were recruited via the direct care team and advertisements. Participants were aged over 18 years (no upper age limit), with internet access for the duration of the study. Participants were randomly allocated to an eight-week online mindfulness training intervention (N=28), or to receive eight weeks of psychoeducational materials on SCI and chronic pain (N=27). Interventions: An established web-based, mindfulness training course was delivered over eight weeks. Participants completed ten minute mindfulness practices, twice per day, six days per week, totaling 960 minutes. The control group received a weekly email with psychoeducational materials (based on the established elements) on SCI and pain, for eight weeks. Main Outcome Measure: Depression severity. Results: Mindfulness reduced depression severity more than psychoeducation at T2 (mean difference =-.891, 95% CI [-1.48,-.30]) and T3 (mean difference =-1.96, 95% CI [-2.94,-.97]). Mindfulness training also reduced anxiety at T2 (mean difference =-.888, 95% CI [-1.40,-.38]) and T3 (mean difference =-2.44, 95% CI [-3.20,-1.69]). Conclusions: Results indicate that internet-delivered mindfulness training offers unique benefits, and is viable for caregivers of people with SCI and chronic neuropathic pain. Further work should explore the feasibility of combined education and mindfulness training incorporating both patient and caregiver, for optimum benefit.