Perceived cancer-related pain and fatigue, information needs, and fear of cancer recurrence among adult survivors of childhood cancer.

OBJECTIVE: Pain and fatigue are under-researched late effects of childhood cancer and its treatment, and may be interpreted by survivors as indicating cancer recurrence. Moreover, unmet information needs for managing pain and fatigue may be related to fear of cancer recurrence. We investigated the complex relationships between perceived cancer-related pain and fatigue, unmet information needs for managing pain and fatigue, and fear of cancer recurrence. METHODS: We surveyed 404 adult survivors of any form of childhood cancer (M = 16.82 years since treatment completion). RESULTS: Many survivors reported perceived cancer-related pain (28.7%) and fatigue (40.3%), and anticipated future pain (19.3%) and fatigue (26.2%). These symptomologies were all related to unmet information needs for managing pain (18.8%) and fatigue (32.2%; all p's<.001). Survivors reporting unmet information needs for managing pain (B = .48, 95% CI = 0.19-0.76, p = .001) and fatigue (B = .32, 95% CI = 0.06-0.52, p = .015) reported higher fear of cancer recurrence than survivors reporting no information needs. CONCLUSION: Survivors often have unmet information needs for managing pain and fatigue, and these unmet needs are related to fear of cancer recurrence. PRACTICE IMPLICATIONS: Long-term follow-up clinics should assess pain and fatigue. Information provision about pain and fatigue may be an important tool to help manage fear of cancer recurrence.

The relationship between parental attitudes and behaviours in the context of paediatric chronic pain.

BACKGROUND: Within the context of paediatric chronic pain, parental attitudes are of particular importance given that they have the potential to impact on how parents respond to their child. The current study was designed to assess whether parental attitudes, such as parental confidence and beliefs in their child's ability to function in spite of pain, and parental catastrophising about their child's pain, are associated with parental pain-related behaviours known to be associated with poor child outcomes, such as protectiveness and high levels of monitoring. METHODS: Participants were 138 child-parent dyads recruited from a tertiary chronic pain clinic. Patients were aged 8- to 17-years. Prior to the initial clinic appointment, parents completed validated measures of parental pain catastrophising and parental responses to their child's pain. Patients completed measures of functional disability and pain intensity. RESULTS: Parents who reported lower confidence in their child's ability to cope with the pain engaged in significantly more protective, monitoring and distracting behaviours, even when controlling for the child's recent level of functioning. They also took more days off work due to their child's pain. Parents who catastrophised more about their child's pain engaged in significantly more protective and monitoring behaviours, even when controlling for the child's recent level of functioning. CONCLUSIONS: Parental behaviours in response to their child's pain are significantly related to parental confidence in their child's coping and parental pain-related catastrophising. Clinical interventions may benefit from addressing parental attitudes, especially their confidence in their child's ability to function.

Growing pains: twin family study evidence for genetic susceptibility and a genetic relationship with restless legs syndrome.

BACKGROUND: Growing pains (GP) is a prevalent familial childhood disorder of unknown aetiology. Familial occurrence of GP, and individual and familial association of GP with restless legs syndrome (RLS) has been reported. METHODS: We applied a twin family design to search for evidence of genetic susceptibility to GP, and for a genetic relationship between GP and RLS. The parents of 1843 twin pairs aged 3-16 years were administered a questionnaire, which identified 88 pairs with at least one twin individual fulfilling criteria for GP. Standard questionnaires for history of GP and RLS were completed for these twin pairs, their siblings and parents. RESULTS: Twenty-five of 34 monozygotic (MZ) pairs were concordant for GP, compared with 12 of the 54 dizygotic (DZ) pairs. The casewise concordance was 0.85 and 0.36 for MZ and DZ pairs, respectively (p < 0.001). The lifetime GP prevalence for relatives of twins with GP was 51% for non-twin siblings, 47% for parents. Twenty-three percent of twin individuals with GP met RLS criteria compared with 8% of twin individuals without GP (p = 0.03). Of the twins with GP concordance, 19% met RLS criteria compared with 2% of twins with GP discordance (p = 0.01). In two MZ pairs, one had GP and the other RLS. The lifetime prevalence of RLS was 40% for mothers, and 24% for fathers and 18% for non-twin siblings. CONCLUSION: This first twin family study of GP provides evidence for a genetic aetiology and for a genetic relationship to RLS.

Pain catastrophizing influences the use and the effectiveness of distraction in schoolchildren.

Distraction is an intuitive way of coping with pain and is often used in children's pain treatment programs. However, empirical evidence concerning the effectiveness of distraction is equivocal. One potential explanation might be that distraction does not work for everyone in every situation. In the current series of studies, we examined the role of pain catastrophizing as an influencing factor of distraction effectiveness. In the first study, we investigated the use of pain coping strategies (including distraction) in schoolchildren (N = 828, aged 8-18 years) by means of a questionnaire. Results indicated that children with higher levels of pain catastrophizing reported using less distraction strategies in daily life than children with lower levels of pain catastrophizing. In the second study, a subsample (N = 81, aged 9-18 years) performed a painful cold pressor task (CPT) (12 °C). Participants were randomly assigned to a distraction group, in which an attention-demanding tone-detection task was performed during the CPT, or a control group, in which no distraction task was performed. Results showed that participants in the distraction group were engaged in the distraction task, and reported to have paid less attention to pain than participants in the control group. However, distraction was ineffective in reducing cold pressor pain, and even intensified the pain experience in high catastrophizing children. Caution may be warranted in using distraction as a 'one size fits all' method, especially in high catastrophizing children.

Child and parental surveys about pre-hospitalization information provision.

BACKGROUND: There is little available information about what children and parents would like to know about a forthcoming hospitalization and what they currently receive. METHODS: The current study was a survey of 102 children between the ages of 6 and 10 years and their parents recruited either from the Recovery Unit following day surgery or from the wards following overnight admissions at Sydney Children's Hospital, Australia. Information was obtained about each child's experience in hospital, the nature and format of information that they had received prior to the admission, and what information the child/parent thought would be helpful to receive. RESULTS: Parents recorded a total of 163 questions asked by children prior to their admission. Questions related to timing (e.g. duration of admission, length of procedure), pain, procedural information, anaesthesia, needles, whether parents can be present, activities to do in hospital, seeking explanations ('Why' questions), hospital environment, seeking reassurance and miscellaneous questions. Children who were satisfied with the amount of information they received before coming to hospital subsequently reported that they would be significantly less scared should they need to come back to hospital for a future procedure. A total of 46.7% of children received information about their hospitalization from their parent(s) and a further 12% from a doctor and parent. CONCLUSIONS: Children were found to have many questions about a forthcoming hospitalization. Parents were found to have a major role as information providers. Further research is needed to assess parental confidence and competence to meet their child's information needs.